Rehabilitation in Practice: Ethnographic Perspectives 9811683166, 9789811683169

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Christopher M.  Hayre Dave J. Muller Paul M. W. Hackett   Editors

Rehabilitation in Practice Ethnographic Perspectives

Rehabilitation in Practice

Christopher M. Hayre · Dave J. Muller · Paul M. W. Hackett Editors

Rehabilitation in Practice Ethnographic Perspectives

Editors Christopher M. Hayre University of Exeter Devon, UK

Dave J. Muller University of Suffolk Ipswich, UK

Paul M. W. Hackett Emerson College Boston, MA, USA

ISBN 978-981-16-8316-9 ISBN 978-981-16-8317-6 (eBook) https://doi.org/10.1007/978-981-16-8317-6 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Singapore Pte Ltd. The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721, Singapore

Dr. Christopher M. Hayre would like to dedicate this book to his wife Charlotte and his daughters, Ayva, Evelynn and Ellena. Love to all. Professor Dave J. Muller would like to dedicate this to his extended family with love, Pam, Emily, Lucy, Tasha, Harlie, Toby, Edie, Kaya and Freya. Professor Paul M. W. Hackett would like to thank Jessica whose support makes it all possible. The editors would also like to dedicate this book to all contributing authors to whom have made this an enjoyable volume to bring together.

Preface

This book examines the application of ethnography in clinical rehabilitation. In the chapters that follow, we demonstrate how ethnographic methods span the life cycle. The contributions from authors, from around the world, appreciates the value of ethnographic methods by adding to their respective rehabilitation discipline. This edited book does not seek to ‘play it safe’ by simply demonstrating conventional practice or methods of ethnography. On the contrary, the authors of this text offer important methodological considerations by reflecting on their own positionalities in the field, coupled with astute ways of collecting and examining field work. Whilst the editors of this book have their own methodological interests in ethnography, demonstrated by either editorial roles, primary research and/or other authored works (both theoretical and practical), we also recognize our own existential learning, as we have read and critiqued the interpretation of others, vis-à-vis, those demonstrated in this text. What this means is that ethnography does not begin nor end with a specific viewpoint or lens in which prospective researchers simply replicate. On the contrary, it demonstrates how ethnography can ‘fit’ or be ‘crafted’ to the needs of the researcher and/or area of research inquiry. Rehabilitation is not dissimilar. The multifaceted practice and spectrum of rehabilitation is demonstrated in this book, demonstrated with examples involving children or those experiencing end of life care. In short, whilst we accept that ethnography plays a pivotal role in enabling our appreciation of rehabilitation and enhancing the evidence base, it is pivotal we maintain academic rigor. As editors, we have learnt that the practice of ethnographic research, as advocated here, offers opportunities for prospective researchers looking to apply ethnography to better understand cultural phenomenon pertinent to their rehabilitation setting(s). Further, the experienced researchers who have contributed to this book, enables us to begin to understand an array of ‘methodological choice’, coupled with ethical dilemmas, gaining and maintaining access and how researchers confront their own reflexive and positional actions. Clearly, then, this book reflects on the role of the researcher, his or her participants, and the research environment itself. More importantly, by reading the following chapters, this will enable us to become accustomed

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to recognizing how the abovementioned components lead and affect originality in our work. This text resonates with several audiences. Students writing for dissertation and/or research proposals will find examples within the life cycle stimulating to help support their own decision-making. Academics, practitioners, and prospective researchers will not only find methodological and empirical chapters useful but possibly transferable in either post-doctoral work or academic teaching and learning. In our introductory chapter, we set the scene by valuing ethnography and what it means for rehabilitation practice. Here, we expose current uses of ethnography, both practically and theoretically, but also demonstrate the inherent versatility of this methodology in being able to grapple with important cultural or sub-cultural phenomena in rehabilitation. It is anticipated that readers will resonate with the tailored selection of ethnographic examples, not only to inform their own research practices, but to enlighten and open new discussions concerning the methodological and empirical use of ethnographic work in rehabilitation.

Devon, UK

Dr. Christopher M. Hayre

Ipswich, UK

Prof. Dave J. Muller

Boston, USA

Prof. Paul M. W. Hackett

Acknowledgements

We would like to thank all contributing authors for sharing their ethnographic work. Your commitment to ethnography within the rehabilitation space supports the editor’s original assertions for seeking to bring an edited volume together. As readers will appreciate, the varied methodological accounts and actions of researchers provides valued insight for any prospective researcher thinking or applying ethnography in their own work. The works presented in this book offer a plethora of methodological theory, but perhaps most importantly, clinical application(s). Ethnography can be applied in a number of ways and into different contexts, which is overtly demonstrated via contemporary and innovative approaches. Lastly, as editors, we agree this has been an exciting learning experience upon reading and accepting chapters for publication.

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Contents

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Valuing Ethnography in Rehabilitation Practice . . . . . . . . . . . . . . . . . . Christopher M. Hayre, Dave J. Muller, and Paul M. W. Hackett

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Ethnography in Rehabilitation: Methodological Applications . . . . . . R. M. Strudwick and Christopher M. Hayre

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Microethnographic Case Studies: One Phenomenon in Context Scrutinized from Multiple Perspectives . . . . . . . . . . . . . . . Evelyne Durocher

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Ethics of Conducting Research on People with Disabilities or in Rehabilitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . D. B. Resnik and Paul M. W. Hackett

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Institutional Ethnography . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Birgit Prodinger

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Use of Ethnographic Data to Critically Reflect on Disabled Children’s Participation and Their Encounters with Rehabilitation Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Snæfrídur Thóra Egilson

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Incorporating a Reflexive Ethnographic Sensitivity in Child Protection Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . James G. Rice and Hanna Björg Sigurjónsdóttir

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Bringing an Ethnographic Sensibility to Children’s Rehabilitation: Contributions and Potential . . . . . . . . . . . . . . . . . . . . . Kinga Pozniak and Gillian King

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Ethnography and Its Potential to Understand and Transform the Rehabilitation of Spinal Cord Injury . . . . . . . . . . . . . . . . . . . . . . . . 117 Javier Monforte, Víctor Pérez-Samaniego, and Brett Smith

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10 Ethnographies of Limb Loss and Rehabilitation . . . . . . . . . . . . . . . . . . 131 Craig D. Murray 11 Navigating Transitions: Liminality, Ethnography and Stroke Rehabilitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 145 Elizabeth Taylor 12 Time for Talk: The Work of Reflexivity in Developing Empirical Understanding of Speech and Language Therapist and Nursing Interaction on Stroke Wards . . . . . . . . . . . . . . . . . . . . . . . 161 Rachel Barnard 13 Ethnography as a Way of Knowing in Rehabilitative Palliative Care: A Critical Reflection on Processes, Products, and Potential Pitfalls . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 175 Andy Bradshaw 14 ‘Comfortably Numb’: Explorations of Embodiment and Recovery in an Ethnography of Operating Theatres . . . . . . . . . . 199 Luke Ewart and Shane Blackman

Chapter 1

Valuing Ethnography in Rehabilitation Practice Christopher M. Hayre, Dave J. Muller, and Paul M. W. Hackett

Abstract In this chapter, we wish to set the scene by valuing ethnographic methodologies in rehabilitation practice. We begin by offering our positionality, as book editors, and reflect collegially as researchers, journal editors, practitioners and journal reviewers. We hint of an epistemological shift within ethnography, vis-à-vis ‘postmodern ethnography’, demonstrating a unique association with health and rehabilitation practitioners. Next, by situating ethnography in the wider literature, we demonstrate its versatility to the reader, appreciating contributions in many disciplines, whilst readily identifying relevance in health and rehabilitation. This provides a perspective that ethnography has both historically and contemporaneously captured sociocultural phenomena in an array of settings. Importantly, as academics, we offer a critique to the delivery of ethnography whereby researchers may find themselves balancing their own methodological interests with emerging empiricism, whilst ensuring the former does not become superior over the latter. In our critique, we do not wish to devalue ethnography, but merely seek to reflect the importance and value of this critical methodology—the generation of original works. Keywords Ethnography · Qualitative · Quantitative · Observation · Anthropology · Postmodern ethnography

Introduction This introductory chapter discusses the value of ethnography within rehabilitation. Before we examine this, it is important to introduce our positionality (and rationale for developing this edited book). As editors, we do not stem from similar academic disciplines. The first author [CH] is a vocationally educated diagnostic radiographer and registered healthcare professional (at the time of editing this book) in the UK and Australia. Following the commencement of a Ph.D., my interests steered towards utilizing ethnography to examine how radiographers performed X-ray examinations C. M. Hayre (B) · D. J. Muller · P. M. W. Hackett Diagnostic Radiography, School of Dentistry and Medical Sciences, Charles Sturt University, Bathurst, Australia e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_1

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with advancing technology. My co-editors [DM and PH] are experienced professors in their respective fields of psychology, with a publication record demonstrating scholarly interest in the field of ethnography, coupled with senior editorial positions in reputable journals. This positionality highlights our ongoing interest with this methodology, which continues to offer insightful empiricism to rehabilitation practitioners. Moreover, our secondary rationale for developing this book is grounded by the growing number of possibilities in which ethnographic research offers to clinical practitioners. For instance, in the highly reputable journal, Disability and Rehabilitation, we continue to observe a growing number of ethnographic works across several subspecialisms. Further, whilst we read ethnographies that perhaps focus on ‘conventional approaches’ which are clearly supported, the editors of this book seek to push the boundaries and offer alternate ways of conducting ethnography, such as combining X-ray experimentation with an according [post-] positivism lens (Hayre, 2016). There is further suggestion that ethnography may move beyond the conventional ‘mixed view’ of interpretivism and [post-] positivism and ‘epistemologically shift’ into postmodernism (Holliday, 2016). Whilst beyond the scope of this introductory chapter, it is important that we appreciate and reference a potential ‘postmodern ethnography’. This leads us to assert (and challenge) that we do not view ethnography as a methodology outside the medical model, which is seen as complimentary by simply observing and interviewing individuals. On the contrary, we assert that ethnography is inherently part of the medical model, as it reflects the way medical doctors and other healthcare practitioners behave, observe, interact and understand illness or conditions on daily basis (Hayre et al., 2021). This assertion is one of the key drivers for writing and disseminating ethnography work in both medical, health and rehabilitation spaces. As a collective, we continue to publish qualitative and quantitative papers in our respective disciplines and seldom conform to a paradigmatic ‘tradition’. Adopting such an eclectic position is advantageous as it enables us to grapple with and appreciate our philosophical differences within our respective traditions and to apply/critique alternate ethnographic strategies to best uncover undocumented sociocultural phenomena. Importantly then, our viewpoints and ongoing interests in ethnography are rooted in our practical interests which are beginning to move into other areas of academic interest, notably: academic rigour, philosophy, and what impact ethnography or postmodern ethnography may have upon healthcare professionals. We have specifically adopted this perspective in relation to rehabilitation as there are few published works that bring together this research in a book volume.

The Value of Ethnography in Rehabilitation The importance of ethnographic work is not only readily identifiable within rehabilitation literature. To date, ethnography has been applied in many academic disciplines, notably business, politics, sociology and education. Its uses in health care and

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medicine are also evident. The view that ethnography is not simply ‘home’ to a solitary discipline demonstrates ethnography to be a versatile methodology. More recent examples, however, demonstrate how ethnography is practised amongst healthcare researchers, coupled with emerging approaches and entanglements (Hackett and Hayre 2020). Looking back on published works, seminal studies of scholars have not simply introduced ethnography to healthcare practitioners but have continued to reaffirm its place methodologically and empirically (The et al, 2000; Taxi and Barber, 2003). Rehabilitation is no different and in recent years has offered unique insight into a number of areas (Barnard et al., 2021; Chang et al, 2021). The abovementioned is unsurprising in response to what Hammersley (1992, p. 35) termed ‘practitioner ethnography’ whereby researchers, who are practitioners in their respective fields, utilize ethnography for their own workplace purposes. Whilst this remains positive, there is some doubt surrounding what ethnography ‘is’ or ‘means’. In medicine, for instance, Savage (2000, p. 1400) suggests that one of the primary reasons for its neglected use resides in a lack of standardized interpretation. This is an important point and one that requires consideration by prospective ethnographic researchers. Whilst on the one hand, forthcoming chapters will demonstrate varying complexities and situations to which ethnography can be applied, they do not detract away from ethnography’s central tenets. This central component is naturally grounded by the term itself. The term ‘ethnography’ is derived from the Greek words ‘ethnos’ (folk/people) and ‘grapho’ (to write), with an overarching premise of both learning and writing about people. Importantly, one of the ‘standout’ features of ethnography, when compared with other research designs, resides in the use of participant observation. This evolved because of the seminal work by Bronislaw Malinowski, during his travels to Australia, later leading to his influential text, Argonauts of the Western Pacific (Malinowski, 1984). It was during this anthropological fieldwork of indigenous Australians that he uncovered an underexplored culture via ‘participant observation’, which later evolved and became a distinct method within qualitative research. In short, ethnography is an exploration of culture(s) using the participant observation method. Like most qualitative methods, ethnography now has many iterations, which may provide some rationale into some of the abovementioned uncertainties. This is also commonplace amongst other research designs, such as grounded theory, whereby its ‘pure form’ has been lost due to many iterations and interpretations by researchers. There is a potential danger here. We accept that ethnography offers flexibility and an iterative approach to research, grounded by both reflexive and positional thinking and action(s) by the researcher, allowing for alternate methods or approaches to coexist. X-ray experiments, for example, are arguably obscure in ethnographic research (see Chap. 2). Although, on the one hand, this may place ethnography within postmodernism, beyond the conventional epistemology of interpretivism and potentially offer interest and other avenues in which ethnography can or should be applied, it is possibly detrimental for new or embryonic researchers as they try to develop a structure in their ethnographic work. Whilst, in Chap. 2, the first author captures ethnographic methods that are termed ‘obvious and obscure’, we recommend that readers critique such innovative applications to ascertain whether they feel it remains

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ethnographic, or not. Here, we argue that practitioners from varying health professions rely on an array of information to observe, interpret and understand healthcare delivery.

What to Expect from This Book? This book focusses clearly upon ethnography for rehabilitation practitioners. In Chaps. 2–5, examples showcase some thought-provoking methods, microethnography, ethics and institutional ethnography. These chapters have been written to allow readers to reflect on their own ethnographic approaches and decided how or if abovementioned strategies fit or even challenge previously held ideas around what an ethnographic methodology ‘looks like’. In the mid-section of this book (Chaps. 6– 8), we observe authors delivering and managing ethnographic research amongst children. Clearly, research involving children brings its own merits and challenges, and chapters will focus on disabled children’s participation in research, coupled with sensitivity and an overarching goal of obtaining sound rehabilitation practices. Chapters 9–12 appreciate the importance of ethnographic work with individuals experiencing limb loss and/or neurological impairment due to spinal cord injury and stroke. In these chapters, close encounters experienced by the researchers in their conjoint roles as both researcher and health professional offer insights into several aspects of the ethnographic research process and how we self-navigate access to the field, contact gatekeepers, participants, whilst remembering our positionality and reflexivity in the field. In latter Chaps. (13 and 14), we welcome unique ethnographies that encompass the surgical theatre and palliative care. Clearly, the abovementioned approaches show us how practical and versatile ethnography is. Most importantly, as readers, we are provided with not only the empirical insight of such approaches, but the journey in which ethnographers and health professionals [un]balance themselves between being a researcher and practitioner and how they overcome and welcome their positionality in order to uncover impactful data.

Summary This introductory chapter has sought to provide oversight of forthcoming chapters. As editors, we appreciate the value of ethnography in rehabilitation, grounded from our own commitments as editors and reviewers of respected journals. One of the important features addressed in this introductory chapter is the ongoing need, or perhaps struggle, to find a balance between allowing ethnography room and space to evolve and ‘fit’ where needed in accordance with the researchers aims and objectives. Furthermore, this balance is met with ensuring that the researcher’s voice, participant’s voice and/or methodological design do not overpower the empirical usefulness in which the research sought to uncover. That said, whilst we are not in opposition

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in allowing researcher’s ‘voice’ what is important methodologically, we do concede that it should not ‘outvoice’ or ‘overpower’ the overarching purpose of the research design. We do, however, fully accept and expect that ethnography is here to stay in rehabilitation and that additional designs in response to research questions will increasingly appreciate the flexibility and utility of this research methodology.

References Barnard, R., Jones, J., & Cruice, M. (2021). When interactions are interruptions: An ethnographic study of information-sharing by speech and language therapists and nurses on stroke units. Disability and Rehabilitation. https://doi.org/10.1080/09638288.2021.1871785 Chang, F., Fields, B.E., Kersey, J.M., Wu, C., Shih, M., & Skidmore, E.R. (2021) How does culture influence the implementation of strategy training in stroke rehabilitation? A rapid ethnographic study of therapist perspectives in Taiwan and the United States. Disability and Rehabilitation. https://doi.org/10.1080/09638288.2021.1946604 Hackett, P. M. W., & Hayre, C. M. (Eds.). (2020). Handbook of ethnography in healthcare research. New York: Routledge. Hammersley, M. (1992). What’s wrong with ethnography? Routledge. Hayre, C.M. (2016) Radiography observed: An ethnographic study exploring contemporary radiographic practice. Ph.D. Thesis. Canterbury Christ Church University. Hayre, C.M. Blackman, S., Hackett, P.M.W., Muller, D., & Sim, J. (2021). Ethnography and Medicine: The utility of positivist methods in ethnographic research. Anthropology and Medicine. Holliday, A. (2016). Doing and writing qualitative research (3rd ed.). Los Angeles. Malinowski, B. (1984). Argonauts of the Western Pacific. Waveland Press. Savage, J. (2000). Ethnography and health care. BMJ, 321(7273), 1400–1402. Taxis, K., & Barber, N. (2003). Causes of intravenous medication errors: Am ethnographic study. Qualitative Safe Health Care., 12, 343–347. The, A. M., Hak, T., Koeter, G., & de Wal, G. V. (2000). Collusion in doctor-patient communication about imminent death: An ethnographic study. BMJ, 321, 1376–1381.

Chapter 2

Ethnography in Rehabilitation: Methodological Applications R. M. Strudwick and Christopher M. Hayre

Abstract This chapter will provide an outline of ethnography as a methodology, coincided with reflections of research methods within an ethnographic study for prospective rehabilitation practitioners. The chapter will begin by providing a brief overview and outline the virtues of undertaking ethnographic research amongst service users. Then, the researchers focus on some of their own ethnographic methods, some commonplace and another unique. This is supported with important methodological issues that take place within the field and how these provide both opportunity and uncertainty. Central to these discussions are the authors’ reflections on the radiography environment, an imaging environment previously underexplored in the field. Lastly, this chapter considers the voice of participants and how they can be represented in a way that remains authentic and not tokenistic. This content will be linked to undertaking an ethnographic study with service users within rehabilitation services. Keyword Ethnography · Service users · Participant observation · Interviewing · Experimentation · Intervention · Retraction · Authenticity · Tokenism

Overview of Ethnography as a Methodology The methodology of ethnography started in both British social anthropology, where researchers went out to study foreign cultures and in American Sociology (from the Chicago school) which used observation to explore groups on the margins of urban industrial society. The aim of these different groups of researchers was the same, to provide cultural descriptions of the groups of people that they studied (Brewer, 2000). Since that time, ethnography has evolved as a methodology and has been used in spheres including education, health care and social work. Ethnography can be seen to be the most basic form of social research; it bears a close resemblance to the ways in which we make sense of the world around us, observing others and questioning R. M. Strudwick (B) · C. M. Hayre Diagnostic Radiography, School of Health and Sports Science, University of Suffolk, Ipswich, Suffolk, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_2

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what we observe (Hammersley & Atkinson, 1991). Ethnographic research involves the study of a particular social group or culture in its naturally occurring setting (Hobbs & May, 1993; McGarry, 2007). The overall aim of ethnographic research is to gain an understanding of culture from the point of view of the members of the community (Spradley, 1979). Hobbs and May (1993) suggest that ethnography is a way to ‘tell it like it is’, describing the culture observed and looking at the social world of those being studied as seen from inside the group. In short, the researcher attempts to uncover the participants’ interpretation of their ‘world’ and draw their own conclusions about the group using many versions that exist to try to make sense of the group’s behaviours and norms. The researcher’s understanding of the culture forms the basis of the findings, which come from the information provided by the participants (Davies, 1999). In order to study the group, the researcher needs to become part of the culture being studied to gain understanding and insight (Hayre & Muller, 2019). In an ethnographic study, the researcher needs to have direct and sustained contact with the participants within their natural setting. This involves watching what happens, listening to what is said and asking questions (O’Reilly, 2005). Typically, ethnographic studies are carried out over a period of time in order to reduce the impact of the researcher’s presence on the situation being studied and allow the researcher to become integrated into the group. People can only sustain an act or maintain their best image for a short period of time (Wolcott, 1999). The researcher’s presence may alter the behaviour of the participants for a short period of time, but this will only continue for a whilst as the ‘real’ behaviour re-emerges. Ethnography usually employs several research methods, which help to link the findings together (O’Reilly, 2005). Ethnography utilises three main research methods; observation which is followed by interviews or focus groups, and the study of written documents or artefacts used by the group (Brewer, 2000; Hammersley & Atkinson, 1991). An ethnographic study would normally start with a period of observation of the group by the researcher, and this is carried out over a period of time with the researcher becoming a participant in the group. Interviews or focus groups can either follow the observation or be carried out during the period of observation to explore issues and questions uncovered during the observation in more depth. Documents used within the culture are studied to find out about how information is recorded and transmitted within that culture, and this can also take place during the period of observation to gain a greater insight into the group. Artefacts used within the group can also provide an insight into the culture of the group. Ethnography is iterative–inductive research and is an ongoing simultaneous process of theory building, testing and rebuilding (O’Reilly, 2005), but also has the potential to provide hypothetical-deductive reasoning, as discussed later (Hayre et al., 2021). Ethnography is a fluid and flexible methodology, a reflexive process which has a broad topic and some guiding questions (O’Reilly, 2005). The study can therefore develop over time, depending on the findings.

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The written product of an ethnographic study is a systematic and thorough account of the culture, which should persuade the reader about its plausibility and rigour (Atkinson, 1990). The ethnographer uses thick description (Geertz, 1973) and their interpretation of the events observed, and the conversations had with participants to ‘paint a picture’ of the culture or group being studied. Thick description is a detailed description of an event which includes the situation and context and allows the reader to begin to interpret what has been observed. An ethnographic study needs to take account of the context in which the data were gathered. The data are collected in context, within natural surroundings and must be contextualised with clear descriptions of the occurrences to make the account believable (Atkinson, 1990; O’Reilly, 2005).

Ethnography and Its Uses in Understanding Service Users Ethnographic research is ideally suited for looking at different groups of people who have common experiences, and this can include service users with similar medical conditions. This is particularly relevant if these service users meet on a regular basis, for example if they all attend a clinic on the same day or attend a support group. The ethnographic researcher can become part of that group and spend time with service users in order to gain an understanding of their experiences and what it is like to be a service user with their particular condition. As with any ethnographic study, the researcher needs to become part of the group being studied and spend time with the service users as a participant observer. It may be easier for the researcher to follow one or two participants more closely in this situation, for example, attending appointments with them. This period of observation will depend on the service users and their condition. Being a participant observer in this context could prove to be challenging for the researcher if they had not experienced health care as a service user before. In a rehabilitation context, this would potentially involve observing a group of service users throughout their rehabilitation journey to gain an understanding of the ‘patient culture’ and experiences and to understand the norms, beliefs, values and behaviours of this group. After a period of observation, the researcher may decide to carry out interviews or focus groups with the participants in order to explore issues observed in more detail and to have the opportunity for a more in-depth discussion of their experiences. It is also typical of an ethnographic study to have informal discussions with participants during the period of observation, which could be termed ‘informal interviews’. We will explore the benefits of one-to-one interviews later in this chapter, as these provide the opportunity for the participant to open up to the researcher in a private setting and discuss things that they may not wish to be discussed in front of other members or indeed in the case of service users, in earshot of professionals who are providing care for them. There may also be relevant documents and artefacts relevant to this group of service users that provide additional insights, for example appointment letters and patient information leaflets. The study of documents and artefacts is not always

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appropriate and should be considered in the context of the group being studied as they may not be relevant to all ethnographic studies. The observational data, data from interviews or focus groups and the information from documents and artefacts can help the researcher to build a picture of the service users’ experiences and what it is like for them.

Research Methods in Ethnography: The Obvious and the Obscure Participant Observation Upon thinking about ethnography, we immediately think of its qualitative virtue, exploring cultural phenomena of groups or subgroups. The seminal work of Malinowski, conducted in 1922, is considered the father of ethnography following his publication, Argonauts of the Western Pacific (1922) (Malinowski, 1984). In this book, Malinowski depicts the underexplore culture of Aboriginal Australians, later leading to the development and recognition of the method ‘participant observation’ (ibid). Today, the use of participant observation is, perhaps, considered the cornerstone of ethnographic research, whereby researchers aim to ‘get close’ to their participants (Hammersley, 1992; Hayre & Muller, 2019). The importance of this method relies on a researcher ‘attending’ his or her environment in order to observe a culture in its natural setting. This is a critical feature of ethnography whereby researchers seek to understand ‘what happens’ and ‘how it happens’. In the authors’ work, the use of participant observation enabled the generation of empirical work previous unseen, specifically in the X-ray environment (Hayre, 2016a; Hayre et al., 2016; Hayre et al., 2017; Hayre et al., 2019; Strudwick, 2014; Strudwick, 2016; Strudwick and Day, 2016). Diagnostic radiography has been argued as a ‘closed profession’, due to its underreported cultural insight, empirically (Hayre & Zheng, 2021). The very nature (and practice of radiography) often requires radiographers to care and image patients in a locked and controlled X-ray room, preventing unnecessary X-ray exposure to colleagues or members of the public. That said, it may also become a form of ‘hidden radiography’ (Hayre, 2016b, p. 215), thus ‘closed’ from external gaze. For the authors, participant observation enabled us to ‘get through the door’ and observe this unique and underexplored environment, vis-à-vis X-ray room(s) and communal areas in order to collect pivotal sociocultural phenomena. One of the key features of applying the participant observation method is the need for prolonged researcher engagement (Denzin & Lincoln, 1994). Whilst other studies have demonstrated lesser longevity in the research space, commonly regarded as ‘rapid ethnography’ (Vindrola-Padros, 2021), for most ethnographers, prolonged engagement remains key. Prolonged engagement in the second author’s work facilitated data generation by capturing the performance and competence of X-ray examinations, notably, how X-ray exposures were used, coupled with other critical practices

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that seek to limit ionising radiation for patients. In the first author’s work, this reflected the professional culture within the imaging department (Strudwick, 2011). Prolonged engagement, then, in both cases, sought to capture a variety of practices, behaviours and attitudes of healthcare practitioners. A notable feature of any overt research, and in particular overt observation, is the Hawthorne effect, whereby participants deliberately [re]act in a manner that is seen to be ‘positive’ to the observer. From experience, however, the Hawthorne effect fades over time, thus eventually leading to the ‘real’ behaviour emerging (Pole & Morrison, 2003). Researchers thinking of conducting ethnographic work in the rehabilitation setting should be aware of initial observations and, importantly, treat initial actions or responses with caution. Further, because the Hawthorne effect can be mitigated against, prospective researchers are encouraged to observe over a period of time. Data captured via observation can be far reaching and involve all human senses (Burgess, 1990). For instance, what a researcher will hear, see, smell or feel can be significant. For example, in the second author’s [CH] work, it was commonplace to record the actions of radiographers using the X-ray tube, whilst also capturing conversations with radiographers and patients or other members of staff. In the first author’s work, actions and conversations were captured along with the hospital smells and the locations in which interactions occurred. Here, we appreciate that whatever the researcher feels is important can be recorded and later used. In addition, non-verbal cues in radiographic research, such as correct movement and placement of the X-ray tube, transferring of patients or manoeuvring of a hospital trolley, remain non-verbal cues, which form part of the culture. In short, varied actions and events captured by the researchers help ‘ground’ data in the naturally occurring environment to which it belonged. From experience, the value of recording ‘everything that mattered’ helped formulate other qualitative and quantitative methods, notably semi-structured interviewing and X-ray experimentation (Hayre, 2016b) or semi-structured interviews and the study of documents (Strudwick, 2011). These will be discussed to not only demonstrate the sequential applicability, but also strengthen the rationale for contributions in quantitative research within an overarching ethnographic methodology.

Interviewing Interviews within ethnographic research typically take place on a formal level, usually by engaging with participants on a one-to-one basis, and in a quiet location. These generally take place upon completion of observation. To some degree, however, as previously discussed, conversations with participants are always naturally occurring, albeit informally, either during quieter periods within the field and/or during tea or lunch breaks. In our ethnographic work, we found ‘less formal’ environments elicit different responses from participants and on occasion more meaningful, reflective and, perhaps, more honest. The interviewing method, as a formal tool, however, allowed the researcher to have a close and undisclosed conversation with his or her participant(s) (Burgess, 1993). This is important to reflect upon especially if the area

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of questioning remains sensitive for discussion in a communal area—such as the X-ray viewing room or staff room (Hayre & Hackett, 2020). This could also be applied to a study with service users where they may not wish to discuss their experiences in a public place where other service users or staff members can hear them. From experience, because the second author [CH] sought to question the behaviour and applications of radiographic practice, such as suboptimum X-ray exposure selection, coincided with intermittent placement of lead-rubber devices on a range of patients, it was felt that such questioning would challenge the practices of participants. In response, it was important that participants were able to discuss or disclose their feelings, away from the opinions of others. Looking back, this close and private encounter via a semi-structured approach sought to provide ‘participant freedom’ and enable them to comment on an area of their own radiographic practice, or the cultural practices of the group. The latter, if disclosed in an open and communal way, may have altered the participants’ responses, depending on the presence of colleagues (senior or otherwise). To some degree, the semi-structured interview not only provides a conversation with purpose, but arguably a ‘safe space’ in radiography or rehabilitation settings if discussing topical or, perhaps, sensitive topics. For transferability, it is likely that prospective ethnographers in the rehabilitation setting will not only utilise interviewing as a means of seeking important insight from participants, but, in addition create a space where participants voice their ‘true’ feelings. The principal purpose of any interviewing method is to examine a participant’s attitudes, beliefs and/or behaviour (Baily, 1996), which for ethnographic studies are used to support observational findings. In the authors’ work, they helped support, visà-vis, triangulate phenomena captured in other methods in order to understand ‘why’ such behaviour was occurring. It is important, then, that if an interview schedule is used, it should reflect observations made; however, this may also prevent the participant from discussing other areas. For example, engagement with semi-structured interviewing, whilst on the one hand allows researchers to ask pertinent questions, supporting or refuting observations; on the other hand, it allows participants to diverge from questions proffered by researchers (Saks & Allsop, 2010). The flexibility with semi-structured interviewing enables participants (or researchers) to expand, elaborate and/or challenge questions. Looking back, the ability to question, elaborate or dismiss questions posed offered a form of member checking of observations, thus helping refine the interview schedule and overall trustworthiness of the ethnographic process. Whilst semi-structured interviews remain commonplace, namely due to the abovementioned attributes, prospective researchers may feel that structured or unstructured styles are needed, depending on their goals (ibid). The former offers little room for discussion or elaboration amongst participants, but useful if seeking, say, binary or focused responses. The latter, however, adopts a style with no structure, allowing conversations to evolve or, in part, led by the participant. Regardless of the approach, ensuring the privacy of participants remains key and helps elicit better responses, as observed in both authors’ own work (Strudwick et al., 2012; Hayre, 2016b). By emphasising that data collected from the participant will be kept confidential, coupled with the use of gender-specific pseudonyms in order to enhance

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anonymity, is suggestive that it will offer confidence that any information portrayed will remain unidentifiable and not traced back to them, as individuals. Upon considering sampling strategies for interviewing, it is important to select participants that are not only willing to continue in the study, but also demonstrates willingness to take part in the method. Naturally, when deciding to utilise interviews as a method in ethnographic research, it will remain pivotal that inclusion and exclusion criteria remain. This will help overcome criticism that a researcher has not simply ‘picked anyone’ but applied criteria that reflects the researcher’s research questions and overall aim of the study. Sampling for interviews or focus groups in ethnographic researcher tends to be purposive (Bowling, 2004). A purposive sample allows the researcher to select participants from different groups who could be considered to be ‘information rich’. For example, the first author selected ten key informants for the interviews covering different grades, job roles, background, experience and points of view. Participants were selected as it was felt that they would be able to interact in an interview setting and provide information, and these individuals had been noted during the observation and selected purposively (Strudwick, 2011). Careful selection of participants will ensure that data saturation can be reached in accordance with meeting the intended research goals. There is, however, a potential ‘self-judgmental’ paradox whereby researchers seek out data saturation but may be overwhelmed with conducting ‘too many’ interviews, in order for researchers to ensure the projects aims are met (NCRM, 2013, p. 5). This remained a conscious challenge for the second author, seeking to prevent some form of ‘interviewing hypocrisy’ via engagement in reflexive thinking. For ethnographers, in order to ensure data saturation is met, coupled with ensuring optimum and ethical use of the interviewing method, prospective researchers may wish to engage in a reflexive-analytical process in order to keep abreast with the topical issues discussed and emerging codes and categories documented (Glaser, 1992). Whilst the authors accept these fails to appreciate the full analytical process of qualitative data, from experience, there is always some form of analysis taking place as researchers perform qualitative methods. Data analysis is not a separate stage of the research, rather it occurs throughout data collection and beyond. This also allows the researcher to continuously reflect on primary data and emerging empiricism that links to the research questions, allowing them to critically decide ‘when to stop’ interviewing following data saturation.

Experimentation: Ethnographic? For most chapters offering methodological or empirical insights into ethnography, few interweave X-ray experiments as part of the overarching and sequential ethnographic design. Here, however, X-ray experiments are discussed in order to celebrate the view that ethnographic research can encompass quantitative methods. Moreover, its application here offers important methodological and empirical insight, which could be applied in rehabilitation environments. For those new to ethnography, the view that qualitative methods remain paramount is generally accepted and

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still advocated here. Yet, in the second author’s work, the use of X-ray experimentation remained a clear driver, supported with what had been seen [observations] and heard [semi-structured interviews] by participants, vis-a-vis the radiographers (Hayre, 2016b). For instance, the former method enabled the researcher to be in close proximity with radiographers and observe their everyday practices, such as patient care and delivery of ionising radiation. Importantly, examining ‘how’ ionising radiation was optimised remained a critical feature in the author’s research, identifying optimum and also suboptimum practices (Hayre, 2016a). The latter method sought support or denial from the abovementioned phenomena, but also understand ‘why’ optimum and suboptimum practices were delivered. This naturally examined the radiographic culture, grounded upon qualitative methods initially by understanding deep-rooted beliefs, attitudes and behaviours of radiographers. On the other hand, the ethnographic researcher (and radiographer) was observing and uncovering phenomena central to the natural sciences, the delivery of X-ray photons and attenuation properties in matter. This remained critical in understanding the phenomena pertinent to the radiographic culture under examination, and thus important to test assumptions made. This process of observing and discussion offers inductive empiricism about a given phenomenon, such as proximity of the X-ray tube to the patient, or how well the radiographer uses collimation to optimise radiation and enhance image quality (Hayre et al., 2019). These findings were unique to the author’s work [CH] and used to support optimal and suboptimal practices, hence the rationale for X-ray experiments. Here, we appreciate how inductive reasoning led to the development of hypothetical-deductive choices, e.g. the examination of increases and decreases of ionising radiation to patients during certain X-ray procedures. The purpose of incorporating X-ray experiments not only supported former observation and interviewing methods, but also strengthened the overarching research goals (Hayre, 2016b). The amalgamation and complimentary use of quantitative methods yielded by the second author expanded and supported qualitative data. Further, upon grappling with philosophical discourses, which are generally seen to be opposed, this approach is professed for rehabilitation and medical contexts (Hayre & Blackman, 2020; Hayre et al., 2021). Here, appreciation of the possibilities is accepted because whilst opposed philosophically complimentary use of qualitative and quantitative methods for rehabilitation and medicine is achievable. Remembering that ethnography seeks to understand a culture underexplored, it is not unrealistic to consider X-ray experiments or some other form of experimental design seeking to support qualitative phenomena concerning the use and application of ionising radiation. This provides an opportunity for prospective rehabilitation researchers by demonstrating that perhaps even the most unconventional (and positivist) methods, such as X-ray experiments, or other quantitative methods can support conventional ethnographic empiricism.

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Methodological and Ethical Considerations for Ethnographic Work To consider methodological and ethical components of ethnographic research, we should begin by thinking about the role of the researcher. At the outset, it is important that researchers remain open and honest with their research intentions (Adams, 2004). There has been some recognition that researchers have ‘hidden agendas’, failing to disclose their true intentions, in particular when concerned with inductive approaches (ibid). One obvious caveat with any inductive work, however, is that researchers may be faced with challenges in the field, requiring them to ‘act on the spot’. From experience, the authors recognise their own individual challenges, unique to their respective ethnographic designs and how their decision-making was needed throughout. The second author will reflect on his experiences, from his own fieldwork in order to provide insight into prospective ethnographers considering undertaking empirical work in the field of rehabilitation.

Intervention Versus Retraction: Is the Natural Environment Always ‘Natural’? Discussion surrounding if or when a researcher should intervene or retract, as termed above, is reflected from experience in the second author’s ethnographic work. Before it is explored, it is important to recognise that as two radiographers, each of us remained professionally registered healthcare professionals throughout our research. This, in turn, led to some unique decision-making and one that was later termed the ‘ethno-radiographer’ (Hayre, 2016b, p. 93). Looking back, whilst the intention of the second author was to uncover the ‘natural’ environment, this was perhaps a little naïve on initial observation. Unbeknown to the researcher was the impact of his presence on the participant’s behaviour and perceptions towards his research topic. For instance, participants would often question the relevance to the study and also whether they were ‘satisfying him’ (Hayre & Hackett, 2020). This naturally impeded any initial intentions of finding a ‘natural’ and ‘neutral’ space within the X-ray environment. It also hints at a sense of ignorance from the researcher by believing his presence would have little impact on the everyday environment. Over time, however, as the researcher became immersed within the cultural group, alternate decision-making required his intervention and retraction. The former took place in different X-ray rooms, with varying radiographers. Examples include the need to ‘halt’ radiographic examinations whereby a patient would be irradiated with no added benefit (Hayre et al., 2017). Here, incorrect technical settings were captured, in which he alerted the radiographer to. Another example reflects the observation of an unwell patient, whereby signs of instability were observed, with the patient falling from his chair (Hayre, 2016b, p. 69). Examples here demonstrate that whilst the intention of ethnography is to capture undisturbed cultural phenomena, the safety

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of patients remained paramount. The ‘knee jerk’ reaction by the researcher as both a researcher and a radiographer required him to ‘break out’ of the research role and act as a healthcare professional in order to assist. In opposition, it is important to recognise that the researcher did not always intervene or ‘offer’ his opinion upon observing practices that could perhaps be seen as inferior by others. This decision to ‘retract’, at first glance, may appear hypocritical as the author decided to choose ‘where and when’ to intervene. Yet, it was decided to ‘sit back’ whereby no immediate threat or danger was observed and to collect technical practices. This is supported with the rationale that intervention on technical parameters, itself, would wholly discard the subjective decision-making and practices of radiographers in the clinical setting. It became apparent that if a patient or staff member was in immediate harm or danger, then intervention remained necessary; however, it was also important to retract and suppress one’s own view or opinion regarding certain practices in order for cultural phenomena to emerge. This is a key consideration for any rehabilitation researcher, particularly if observing an area whereby intervention may be needed. In short, healthcare professionals observing their own healthcare environment need to abide to their own professional codes of conduct, whilst balancing the need for sound observation in order to enhance the evidence base knowledge of that discipline.

Ethnographic Interviewing: Who, Where and When? As identified above, semi-structured interviews typically take place post-participant observation, as identified in the authors’ work. This sequential approach not only seeks to clarify, but also challenges observations made, albeit optimum or suboptimum. The one-to-one style of interviewing remained useful in order to ‘remove’ the participant from the field. Whilst the word ‘remove’ could be a little overexaggerated, it did intend to ask questions about clinical practice and professional competence away from the gaze of peers. This was important for two reasons. First, it intended to protect participants, allowing them to speak openly and honestly regarding their own practices, which may have been considered inferior by others, say if discussed within a focus group. Second, it offered participants an opportunity to discuss matters that were perhaps ‘organisationally sensitive’, such as their level of in-house training and/or concerns surrounding workplace pressures. In short, the interviews allowed competence-based questioning, coupled with participants being able to voice cultural challenges or concerns pertinent to phenomena encountered. Whilst in a central method in ethnography, interviewing remains critical in other qualitative strategies, such as phenomenology and grounded theory. For ethnography, however, interviewing does offer unique considerations. For instance, due to familiarity with participants during observations, both authors felt conflicted about which participants to select.

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It felt natural to gravitate to participants to whom the researcher developed greater bonds, perhaps even friendships. Hammersley and Atkinson (2007) remind us that ethnographers should be strategically poised between ‘friend’ and ‘stranger’ in the field. This is important to recognise because whilst participants were being selected, perhaps, based on some ‘research-kinship’, it was pivotal to maintain a sense of ‘strangeness’ with participants, ensuring that interviews serve their purpose. Another argument, exemplifying the view that participants were not ‘all friends’ resides in the varied acquaintances and relationships developed amongst participants. It is unlikely, for example, that all participants shared similar feelings or thoughts towards the researcher and vice versa. This, itself, highlights a spectrum of interconnectedness, underpinned by interactions and feelings amongst participants and researchers. In short, it signifies that not all research relationships are similar, even in an environment which perhaps requires close engagement with its participants. Prospective researchers in the rehabilitation setting may find these reflections helpful in order to maintain a sense of ‘closeness’, as well as ‘remoteness’. Here, readers are reminded of balancing the role of ethnographic interviewer by ensuring that one not only remains friendly, helpful and approachable, but also ensures one is poised with remoteness and strangeness in order to appreciate the complexities inherent in the researcher–participant relationship in ethnographic research.

Ensuring Participants Voices Are Represented: Authenticity Versus Tokenistic It is important that participants, in this case service users, are listened to and that their voices are ‘heard’ in the ethnographic report. This can be done throughout the period of observation and during the interviews and focus groups. Service users need to be able to share their stories and their experiences with the researcher, and the researcher needs to hear and understand their perspective. It is important that the researcher develops an understanding of the service users’ experiences and how they perceive their experiences rather than making assumptions based on the researcher’s opinions. The service users’ voices can be ‘heard’ in the final account by using direct quotations, using the service users’ own words to express their feelings, thoughts and opinions. The researcher should not be selective with whose voice is heard but ensure that all the participants and their viewpoints are represented. As we have mentioned previously, ethnography would allow the researcher to understand what it is like to be part of the group of patients being studied. In doing so, the researcher should be able to gain greater understanding of their experiences, behaviours, norms, beliefs and values and how they see the world. This can be achieved by spending time with patient groups, and it could be argued that this is much more effective than a survey at a given point in time. An ethnographic study of patients can aid our understanding of behaviour surrounding health and illness. This is particularly useful as patients’ views on the experience of illness and delivery of services are becoming

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more important within current healthcare systems. It is important that we do not make assumptions about what service users and patients require, person-centred care and values-based practice are becoming more important in the way that the health and social care services are planned and delivered, so that they are tailored to peoples’ needs. Ethnography can show, for example, how the effectiveness of a healthcare intervention is felt by patients and influenced by behaviours and cultural practices of those involved (Prout, 1996). Ethnography can also be useful in understanding the organisation of health care and how communication and management affect patient experiences (Savage, 2000). There is no substitute for time spent with participants. This allows the researcher to better understand their perspectives and to get to know them better in order to represent their voices. It is important that the researcher can represent the voices of the participants, no matter what their status is, and this needs to be carefully considered in the way that findings are recorded and written so an authentic account is produced. Consent from participants needs to be managed carefully. Consent is a continuous process, and therefore, a participant can withdraw their consent at any time. This may mean that some data are lost. If a patient from the group does not consent to being observed, the researcher will need to manage this to avoid that patient and this could also result in data being lost from the study. Participant’s wishes should always be respected. The research texts suggest that participants must be anonymous, and their confidentiality needs to be maintained. This is normally achieved by numbering participants or giving them gender-specific pseudonyms. This is particularly useful for the reader if they want to follow one participant and their data through the study, and it also provides legitimacy to the account. It is also useful to provide some demographic information about each of the participants to give context and background to each of the participants. However, it is argued that this needs to be done carefully in order that it does not identify the patient. This could be problematic if the participants have a rare medical condition or they are an outlier in the group, e.g. the only male in the patient group or the only patient within a certain age group. This is an interesting topic for discussion, particularly when we start to consider patients as participants. Patients who are involved in research studies may not actually be bothered about being identified. This may not actually cause them any concern, despite our reservations as researchers! In fact, it may be that they prefer to be identified so that their voice can be heard. Anonymising participants is time consuming and can be difficult to do as numbers remain an odd way of referring to people, but choices of pseudonyms can also be problematic due to associations one might have with a particular name. It could be argued that anonymity should be a decision made by the participant, as they should make the decision about how their information and data are used. It may be in studies of this nature that the participants want to be known so that they can have a voice and make a point. The participants need to be able to trust the researcher for the relationship to work and to be able to share their feelings and perspectives. This can be done by not keeping the data secret. Costley and Gibbs (2006) suggest that ‘moral trusting’ is a good way to care for the participants and promote the researcher’s integrity. This should help to reduce the feeling that the research is a ‘spy’! The description

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of events during observation needs to provide the context. If the group interactions and the observation of these occur in one setting, a floor plan of the location is useful to provide context to the reader (May-Chahal et al., 2004). This could be a healthcare or a social setting when observing a patient group. This helps the reader to authenticate their findings. Member checking and inter-rater reliability can also be used to ensure that participants’ voices are heard. Member checking involves giving the data and its interpretation back to the participants for them to check the meaning that you have ascribed to the data and look at the accuracy and credibility of the account (Miles & Huberman, 1994). Inter-rater reliability is the extent to which two or more raters or observers agree, and it tends to be used in statistical analysis, but in qualitative research such as ethnography it can be used by a researcher when they check their interpretation of the findings with another researcher or colleague. Both member checking and inter-rater reliability increase the authenticity and reliability of the findings and help to reduce researcher bias.

Conclusion In this chapter, we have provided an outline of ethnography as a methodology and the research methods that can be utilised in an ethnographic study with service users. Possible research methods have been outlined along with some of the methodological issues that need to be considered when undertaking an ethnographic study. Examples have been provided from the authors’ own work within radiography. Consideration has been given to how the voices of the participants can be represented so that the account is authentic and not tokenistic. We anticipate these reflections will provide prospective ethnographers in rehabilitation an opportunity to think about the virtues of ethnography, coupled with its methodological versatility in a range of settings.

References Adams, M. (2004). Whatever will be, will be: Trust, fate and the reflexive self. Culture and Psychology., 10(4), 387–408. Atkinson, P. (1990). The ethnographic imagination—textual constructions of reality. Routledge. Bailey, C.A. (1996). A guide to field research, SAGE. Bowling, A. (Ed.). (2004). Research methods in health – investigating health and health services. Open University Press. Brewer, J. D. (2000). Ethnography. Open University Press. Burgess, R. G. (1990). Studies in qualitative methodology—reflections on field experience. JAI press Inc. Burgess, R. (1993). In the field: Introduction to field research. Routledge. Costley, C., & Gibbs, P. (2006). Researching others: Care as an ethic for practitioner researchers. Studies in Higher Education., 31(1), 89–98. Davies, C. A. (1999). Reflexive ethnography—a guide to researching selves and others. Routledge. Denzin, N. K., & Lincoln, Y. S. (Eds.). (1994). Handbook of qualitative research. Sage.

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Geertz. (1973). The interpretation of cultures. Basic Books. Glaser, B. G. (1992). Basics of grounded theory analysis: Emergence vs forcing. Sociology Press. Hammersley, M. (1992). What’s wrong with ethnography. Routledge. Hammersley, M., & Atkinson, P. (1991). Ethnographic principles in practice. Routledge. Hammersley, M., & Atkinson, P. (2007). Ethnography principles in practice (3rd ed.). Routledge. Hayre, C. M. (2016). ‘Cranking up’, ‘whacking up’ and ‘bumping up’: X-ray exposures in contemporary radiographic practice. Radiography, 22(2), 194–198. Hayre, C.M. (2016b) Radiography observed: An ethnographic study exploring contemporary radiographic practice. Ph.D. Thesis. Canterbury Christ Church University. Faculty of Health and Wellbeing. Hayre, C.M. Blackman, S., Hackett, P.M.W., Muller, D., & Sim, J. (2021) Ethnography and medicine: The utility of positivist methods in ethnographic research. Anthropology and Medicine. (In Press). Hayre, C.M., & Blackman, S. (2020). Ethnographic mosaic approach for health and rehabilitation practitioners: An ethno-radiographic perspective. Disability and Rehabilitation. 1–4 Hayre, C. M., Blackman, S., Carlton, K., & Eyden, A. (2017). Attitudes and perceptions of radiographers applying lead (Pb) protection in general radiography. Radiography, 24(1), e13–e18. Hayre, C. M., Blackman, S., & Eyden, A. (2016). Do general radiographic examinations resemble a person-centred environment? Radiography, 22(4), e245-251. Hayre, C. M., Blackman, S., Carlton, K., & Eyden, A. (2019). The use of cropping and digital side markers (DSM) in digital radiography. Journal of Medical Imaging and Radiation Sciences., 50(2), 234–242. Hayre, C. M., & Hackett, P. M. W. (2020). Handbook of ethnography in healthcare research. Routledge. Hayre, C.M., & Muller, D. (Eds.). (2019). Enhancing healthcare and rehabilitation—the impact of qualitative research. CRC Press. Hayre, C.M., & Zheng, X. (2021). Research methods for student radiographers: A survival guide. CRC Press. Hobbs, D., & May, T. (Eds.). (1993). Interpreting the field—Accounts of ethnography. Oxford University Press. Malinowski, B. (1984). Argonauts of the Western Pacific. Waveland Press. May-Chahal, C., Hicks, S., & Tomlinson, J. (2004). The relationship between child death and child maltreatment—A Research study on the attribution of cause of death in hospital settings. NSPCC. McGarry, J. (2007). (2007) Nursing relationships in ethnographic research: What of rapport. Nurse Researcher, 14(3), 7–14. Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook. Sage. National Centre for Research Methods Review Paper (NCRM 2013) How many qualitative interviews is enough? [Online] Available at: http://eprints.ncrm.ac.uk/2273/ (Accessed: 23/04/2021). O’Reilly, K. (2005). Ethnographic methods. Routledge. Pole, C., & Morrison, M. (2003). Ethnography for education. Open University Press. Prout, A. (1996). Actor-network theory, technology and medical sociology: An illustrative analysis of the metered dose inhaler. Social Health Illness, 18, 198–219. Saks, M., & Allsop, J (2010). Researching health—Qualitative, quantitative and mixed method, Los Angeles: SAGE Savage, J. (2000). Ethnography and heath care. BMJ, 321, 1400–1402. Spradley, J. P. (1979). The ethnographic interview. Holt. Strudwick, R.M. (2011). An ethnographic study of the culture in a Diagnostic Imaging Department (DID) DProf thesis, unpublished, University of Salford. Strudwick, R., Mackay, S., & Hicks, S. (2012). Cracking up? The use of dark humour in the radiography department. Synergy. February 2012, pp. 4–7. Strudwick, R. M. (2014). The radiographic image: A cultural artefact? Radiography, 20(2), 143–147.

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Strudwick, R. M., & Day, J. (2014). Interprofessional working in diagnostic radiography. Radiography, 20(3), 235–240. Strudwick, R. (2016). Labelling patients. Radiography, 22(1), 50–55. Vindrola-Padros, C. (2021). Rapid ethnographies—A practical guide. Cambridge University Press. Wolcott, H. F. (1999). Ethnography—A way of seeing. Altamira Press.

Chapter 3

Microethnographic Case Studies: One Phenomenon in Context Scrutinized from Multiple Perspectives Evelyne Durocher

Abstract In this chapter, I discuss microethnographic case studies and present an example of research in which this method was used to examine how aspects of the social and political contexts may affect individual perspectives and actions. In ethnographic case study methodology, the context in which the phenomenon of study takes place is emphasized. While ethnographic case study methods are used to examine broader social groups and communities, microethnographic case studies are focused on smaller units of study such as a few individuals within an institutional context. The use of this method is exemplified through discussion of one research study in which the use of microethnographic case study methodology enabled observation of individual behaviors in the process of discharge and the generation of data to examine how context-specific practices, valued approaches, and prevailing discourses shaped the processes and outcomes of discharge planning with older adults. Keywords Microethnographic · Case studies · Discharge planning · Older adults · Rehabilitation · Critical bioethics · Relational autonomy

Introduction Questions arise about countless aspects of behaviors and actions in healthcare contexts. Why are certain choices made? How do particular actions contribute to outcomes? What guides different approaches and how these are received? Such questions may on the surface appear uncomplicated, but with a slightly closer look, their complexity and inherent nuances emerge; what the specific question is and how one might go about answering may no longer appear quite so simple. Growing numbers of ever-evolving methodologies and methods exist to guide research in healthcare and, more specifically, rehabilitation contexts. All have challenges and benefits as well as varying alignment to answer the questions being posed. One such methodology that to date has been little used in rehabilitation contexts is microethnographic case study E. Durocher (B) School of Rehabilitation Science, McMaster University, Hamilton, Canada e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_3

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methodology. Microethnographic case study methodology strikes a balance between guiding exploration of a specific phenomenon of study with significant consideration of the multiple and intersecting contextual aspects in which the phenomenon exists or occurs. This method has not been used tremendously to date and when it has been used and how the method is interpreted has varied. Early writings about microethnography included work by Erickson (1975, 1976, 1982, 1995) in the field of education and linguistics and focused on the use of video recordings as data sources. Unsurprisingly, examples of studies taking a microethnographic case study approach tend to be from the field of education (for examples see D’abate et al., 2018; Hellerman, 2006; and Kesselring, 2004), which like rehabilitation contexts involves human goaloriented actions with multiple stakeholders in complex contexts. Microethnographic case studies build on early work in this tradition to mesh case study methodology along with ethnographic analysis. In this chapter, I first delineate features of case studies and microethnographic case study methodology and then use the example of a research study using the method to demonstrate how the methodology can be used to answer critical research questions arising in rehabilitation contexts.

Case Studies Case studies are heuristic, naturalistic, and particularistic in enabling a focus on a particular object of study and promoting examination of people and situations within authentic and defined environments and contexts (Willis, 2007; Yin, 2018). One of any number of phenomena could constitute an object of study, including, for example, an event, a process, an individual or social group, a program, or an institution (Merriam, 1998; Yin, 2018). A distinguishing feature of case studies is that case studies are bounded (Flyvbjerg, 2011; Yin, 2018). “If you choose to do a case study, you are, therefore, not so much making a methodological choice as a choice of what is to be studied” (Flyvbjerg, 2011, pp. 301) and, more specifically, what are the boundaries delimiting the object of focus. Case study methods allow for accessing wide breadth of data sources over a short (Yin, 2018) or extended period of time; rich and deeply descriptive data are generated from different sources in the setting in which the phenomenon exists or is taking place (Flyvberg, 2011; Willis, 2007). Sources of data can vary widely, may be qualitative or quantitative, and could include, for example, observations of participants or others in the context, interview or focus group recordings and transcripts, written documents, or quantitative evaluations records. Case study methods furthermore enable observation and generation of data over time, thereby enabling for development of the case study through multiple events or observations taken at distinct times (Flyvberg, 2011).

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Microethnographic Case Studies Ethnographic case studies extend the case study methodology by not only centering on the object or phenomenon of study, but also placing in sharper focus the context in which that object exists or the phenomenon of study takes place (Merriam, 1998; Willis, 2007). A variety of layers or aspects of the context may be considered ranging from the immediate social, physical, and institutional context to the broader societal context. While ethnographic case studies examine social groups and communities, microethnographic case studies (Willis, 2007, pp. 242) focus on smaller units of study such as a few individuals within an institutional context for example (Willis, 2007). In the remainder of the chapter, I use the example of one study in which microethnographic case study methodology was used to explore the process of discharge planning in one older adult inpatient rehabilitation setting. Throughout the description of the study, I will depict how specific features of the methodology informed the approach or can be discerned.

Discharge Planning with Older Adults from One Inpatient Rehabilitation Setting Timely and appropriate discharge planning is an important component helping individuals to prepare to leave, or discontinue use of, healthcare services. In the case of inpatient care settings, discharge planning includes deciding where an individual will live upon discharge, identifying if care will be needed, and if it is, arranging services to ensure that individuals’ medical and personal care needs will be met. Discharge planning with older adults can be a complex process, and the intersection of competing expectations and demands of individuals involved in the process often begets ethical challenges (Blumentfield, & Isaacs Lowe, 1987; Cummings & Cockerham, 1997; Durocher & Gibson, 2010; Durocher et al., 2016; Friedrich, 2020; Potthoff et al., 1997; Swidler et al., 2007; Wells, 1997; Wong et al., 2020). Many individuals, including the older adult, family members, informal caregivers, and healthcare professionals, may be involved in discharge planning with older adults. Each of these individuals may be subject to, and may also hold, differing expectations and agendas, which can stem from personal experiences, contextually specific social and political systems of thoughts, and conventional practices and processes. Perspectives on how discharge planning should proceed can vary widely with respect to who should be involved in making decisions, how older adults’ autonomy should be mediated, and what norms and values take precedence. Older adults’ family members may have a personal interest in their relative’s well-being and living circumstances, and they may also be called upon to provide care and support. Healthcare professionals may have a professional interest in their clients’ welfare, yet they are also accountable to their institutional employer and to society as stewards of healthcare

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services (Connolly et al., 2009; Dill, 1995; Huby et al., 2007; Wells, 1997). Decisions in situations of discharge from inpatient care to living in the community are also influenced by increasing demands for limited community care services. In the light of the competing wishes, expectations, demands and influences, and the increasingly complex and limited options for care in the community, ethical conflicts can arise, and it can be unclear which interests are driving discharge planning and shaping the outcomes. Differences in perspectives and sometime contradictory agendas can result in conflict and be challenging for all involved individuals. The present study builds on previous research to explore the nature and impact of social and political influences on discharge planning with older adults.

Theoretical Perspective Critical approaches to research align with microethnographic methodology as these approaches highlight critical questions of a social and political nature that require consideration of the context. Such questions guide the examination of hidden forces that may be created and reproduced by social and political structures, practices and processes, as well as by systems of thought underlying these (Eakin, et al., 1996; Harvey, 2013). Critical bioethical approaches guide examination of ethical issues in the provision of healthcare in relation to social and political structures, practices and processes. Such approaches are reflexive and empirical and apply an ethical framework to research, thus generating findings that are applicable to, and informed by, clinical practice (Hedgecoe, 2004; Twine, 2010). Feminist perspectives also highlight the intersection of social and political structures, beliefs, practices, and norms (Sherwin, 1998) in the context and as such align with critical bioethics approaches and microethnographic case study methodology. Feminist theories of relational autonomy complement critical bioethics perspectives in their framing of individuals as inextricably embedded in their contexts (Friedman, 2000; MacKenzie & Stoljar, 2000; MacKenzie, 2008; Sherwin, 1998, 1989; Sherwin & Winsby, 2010). The focus on the inextricably embedded nature of individuals in their contexts in relational autonomy theory implies that individuals’ values, capacities, perspectives, and expectations are seen as having been shaped by and in the light of the values, systems of thoughts, norms, and opportunities embedded in their social and political contexts, again aligning with microethnographic case study methodology. The use of a critical bioethics perspective informed by relational autonomy theory enabled a focus on revealing the hidden and potentially oppressive intersections of power within particular social and political contexts.

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The Phenomenon of Study in This Microethnographic Case Study Using terminology in alignment with microethnographic case studies, in this case, the phenomenon of interest was discharge planning with older adults, but more specifically, how the discharge planning process was shaped by dominant social and political systems and contexts. There was an inherent emphasis in the research question on the context in which the process occurred, which is in alignment with ethnographic case study methodology rather than case studies.

The Study Context The aspects and levels of the context that were considered included physical, social, and institutional aspects of micro-level (e.g., the older adult participants’ contexts during the inpatient stay and upon discharge; roles of and relationships between older adults, their family members, and healthcare professionals), the meso-level (e.g., the context of the rehabilitation institution), and macro-level (e.g., healthcare systems and policies) contexts. In each scenario, the focus at the micro-level was specifically centered on the social aspects of the older adults’ circumstances both in the rehabilitation setting and in the environment upon discharge. I explored who were the individuals involved in the older adults’ care—family members, informal caregivers, formal caregivers, etc.—and examined the relationships between such individuals as well as the different roles and actions they undertook in the discharge planning process and context of care. At the meso-level, the study was set in one of the largest facilities geared toward the provision of healthcare services for older adults (aged 55 years or more) in Canada that also included inpatient rehabilitation. This healthcare center was an urban, university-affiliated, teaching hospital with just over 60 inpatient rehabilitation beds. The rehabilitation unit in this setting offered an interdisciplinary approach that included medicine, nursing, occupational therapy, physiotherapy, social work, therapeutic recreation, and nutrition. Individuals were admitted from acute care and eligibility criteria included that returning to the individual’s previous living circumstances was a realistic option. Options for discharge most frequently included (but were not limited to) returning home without or with privately and/or publicly funded home care; or moving to long-term care (publicly or privately funded nursing home), a retirement home (seniors’ or retirement residence), or a family members’ home whether individuals were eligible to receive publicly funded home care (in their own home or in that of a family member), or to move to publicly funded long-term care or complex continuing care was dependent on an assessment by public healthcare services, which in this context were provincially regulated. In all cases, privately funded care could be added to publicly funded options. Aspects of this meso-level

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context that were explored included the conventions and practices related to care and discharge planning in this context, which included social, political (policy-related), and institutional considerations. Macro-level social, political, and institutional aspects of the context were considered primarily in relation to publicly and privately available services. Healthcare systems in Canada are governed by provinces and territories following broad rules determined by the federal government through the Canada Health Act (Lavis & Mattison, 2016), which stipulates that “medically necessary” care provided in hospitals or by physicians needs to be fully covered by each of the publicly funded healthcare systems. Complementary care by other providers (e.g., nurses, physiotherapists, occupational therapists) and other aspects of care (e.g., prescription drug coverage, dental care) are not usually covered. Home care for older adults is funded but highly limited (Canadian Healthcare Association, 2009).

Participants’ Recruitment Participants were recruited for the study with the aim of creating case studies centered on an older adult being discharged from the rehabilitation setting. Each case study required the inclusion of participants from two stakeholder groups in addition to the older adult: one or more involved family members or unpaid caregivers, and one or more healthcare professionals, all of whom were involved in the care and discharge planning process with that older adult. Diversity in the sample was sought in terms of gender, socioeconomic status, religious affiliation, familial role (e.g., adult child or spouse), professional role (though this was focused on individuals involved in the discharge planning process and thus included nurses, social workers, occupational therapists, and physical therapists), and ethnic origin in order to provide a broader overview of this process and not limit the data to experiences that may be specific to attributes. While it is acknowledged that gender roles and cultural norms may affect power relations, due to my small sample size and the focus of the study, I was not seeking to analyze significant differences based on attributes, but this could be an area for further study. Participants for each of the case studies were recruited strategically; for each case study, an older adult participant for whom the discharge location was contentious was recruited first. As a researcher, I attended weekly team rounds during which the care of current inpatients was discussed, which enabled me to identify potential participants. Following this meeting, I approached one of the healthcare professionals who was assigned to the individual’s care and inquired about eligibility. Once an older adult had been identified as a potential participant, one of the healthcare professionals approached the individual about potential participation, and if permission was given, I met with the older adult to further discuss the study and their potential involvement. If the older adult gave consent to participate, I requested their permission to contact involved family members and healthcare professionals to seek their participation. Consent to participate from a minimum of one family member or informal caregiver

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as well as a minimum of one healthcare professional was required to move forward with each case. Once the minimum group of individuals had consented to participate, I sought consent from remaining family members, informal caregivers, and healthcare professionals to observe the family discharge planning conference.

Data Generation In line with ethnographic methods, I was immersed and engaged in the research setting for a lengthy period, which in this case was eight months. During this time, I would be present on the unit for two to five days a week between 3 and 6 hours each day, depending on the meetings for that day, scheduled family conferences or interviews. Data for the microethnographic case studies were generated from multiple sources and included field notes about observations of the weekly team rounds, the discharge planning family conferences, and all interviews and interview transcripts. For each case, I first observed the family conference and then conducted face-to-face semi-structured interviews with the older adult, involved family members/informal caregivers and healthcare practitioners.

Field Notes and Observations Weekly rounds—Because I did not have consent of all the patients on the rehabilitation unit to include their information in the research study, I did not have ethics approval to take notes of any sort during the weekly team rounds during which each patient was discussed. I attended each team rounds meeting during the period of study but did not take notes and instead wrote field notes immediately following these meetings. I furthermore limited my observations in these field notes to interactions between team members and language used when discussing patients. Discharge planning family conferences—I attended the family conference for the older adults at the center of each case as a non-participating observer. At these meetings, the older adult, family members, and caregivers as well as healthcare professionals discussed the older adult’s needs upon discharge and potential discharge options. Healthcare professionals who conventionally attended the meeting included the head nurse, social worker, occupational therapist, and physical therapist. Other professionals were included if they were involved in that person’s care, and they had recommendations for the discharge plan. As a non-participating observer, I did not partake in the discussion but merely observed the interactions between the different individuals. In an effort not to affect the process of the meeting or make anyone selfconscious about their actions being observed or documented, which might thereby influence their behavior, as with the field notes written about rounds, I did not take

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notes during the meeting.1 Immediately following the meeting, rather, I wrote a field note. In an effort to be thorough in my field notes, I used the following framework, which I adapted from Bodgewick (1999): Who is present? What formal role(s) are they playing both in relation to the older adult and in the meeting? How do these roles relate to other individuals who are present? What actions is each individual performing? Do the roles, language, or actions differ when individuals are relating to different individuals? What roles might each individual play upon discharge? How do the roles individuals anticipate upon discharge affect their actions and interactions at the discharge planning conference? What is happening? What are individuals doing and saying? How do people appear to be behaving? What things appear to be routine? What assumptions are spoken and unspoken? What assumptions or discourses are being reproduced through the interactions? What is the tone of communication? What body language is being used? To what extent are various participants involved? To what extent are their views communicated and reflected in the discussion? How do power relations manifest in the interactions? When do various activities/interactions occur in the discharge planning conference? How do various activities in the process relate? How long do different elements of the discharge planning conference last? Where is the discharge planning conference happening? What part do the physical surroundings contribute to what is happening? How does it affect individual roles and interactions? How is the discharge planning conference organized? How is the process unfolding? What rules and norms are evident?

The field notes about the discharge planning family conferences informed the semistructured interviews for each specific case as well as for subsequent cases. Observations of the discharge planning conferences enabled me to gain an understanding of the discharge planning process. Observations and the process of writing fieldnotes and reflective memos about both the conferences and weekly rounds allowed me to observe how institutional processes and conventions, discharge planning and communication practices, as well as assumptions and values, shaped the participants’ behaviors and interactions.

Semi-Structured Interviews Following my observations of the family conference, I conducted individual semistructured interviews with the older adults, as well as with involved family members and healthcare professionals. Semi-structured interviews (Kvale & Brinkman, 2009) gave me the opportunity to investigate specific topics while allowing the flexibility to probe or explore further both what the participants said and what I observed during the care conference, as well as the specific circumstances of their case, which could not be known ahead of time. Interview guides were developed following the 1

Please see Emerson et al. (1995) Chap. 2 for a discussion about the consideration of taking field notes and the potential impact this may have on the behaviors and self-awareness of participants in relation to data generation.

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work of Green and Thorogood (2009) as well as of Kvale and Brinkman (2009) and consisted of questions exploring the perspectives and experiences of these different stakeholders on their discharge decision-making. The guides provided a means of exploring participants’ perspectives of decision-making processes; individual priorities, wishes and beliefs; assumptions about various roles; and ethical challenges experienced by various individuals. Additionally, as with the observations of the family conference, following each interview, I wrote descriptive and reflective field notes (Bodgewick, 1999; Emerson et al., 1995). In these, I attempted to write as many details as I could in order to help me fill out and recollect further details as I listened to the interview recordings or read the transcripts. As a guide for my field notes, I used a modification of a segment of the field note guide that I used for the observations of the family conference described above. What is happening? What is the individual doing and saying? How does the individual appear to be behaving? What assumptions are spoken and unspoken? What assumptions or discourses are being reproduced through the interactions? What is the tone of communication? What body language is being used? To what extent are various individuals involved in this person’s discharge? To what extent are this person’s views communicated and reflected in the discussion in relation to the family conference? (Adapted from Bodgewick (1999))

In his discussion of field notes, Bodgewick (1999) also recognizes their value in contributing to taking a reflexive approach and being aware of how researchers cocreate the research findings. About this, Bodgewick says: The experiences we have in the field are not merely observed and recorded, they are also felt. Reflecting on the feelings is essential. Only through such reflection can the researcher determine how he or she is influencing the field experience. (1999, pp. 61)

Thus, following Bodgewick’s suggestions of different types of field notes, I also included reflections about my own feelings, thoughts, and frame of mind during the interview and at that point in the research. I considered how these may be affecting my perspective as a researcher. Interviews were conducted following the observation of the discharge planning family conference in an effort to minimize the influence of the research on the meeting or the decision-making processes and interactions of the participants. Interviews were conducted at a time and location of the participant’s choosing. In most cases, this was in the older adult’s hospital room or a quiet area in the facility. At her request, one interview with a family member participant was completed in her home. Interviews were audio recorded and transcribed verbatim by me or by a professional transcriptionist. I reviewed all the transcripts for accuracy. The final dataset included five case studies consisting of field notes and transcripts from twenty-two interviews. I interviewed five older adults, seven family members, and eight healthcare professionals. The five older adults included three women and two men between the ages from 80 to 100 years. The family members of these older adults consisted of five adult children (two daughters and three sons), a son-in-law (who was interviewed in conjunction with his wife, the older adult’s daughter), and a wife (who lived with her husband, the older adult participant). The 11 interviews with healthcare professionals involved eight different individuals, some

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of whom were interviewed more than once in relation to different case studies. The eight healthcare professionals included one manager, one head nurse, three occupational therapists, one physiotherapist, and two social workers. All the healthcare professionals were women and were registered with the professional colleges in their respective disciplines.

Analysis Data generation and analysis occurred simultaneously to allow for unforeseen topics identified as relevant in the earlier case studies to be explored in subsequent case studies. The data were analyzed inductively and deductively following the process suggested by Dierckx de Casterle, and colleagues (2012), with slight modifications. I began as these authors suggest with a thorough reading and re-reading of the field notes and interview transcripts line by line. These were read in different orders, at times grouped by case and at other times by “perspective” (all of the older adults, all of the family members, and all of the healthcare professionals); the data were also read again individually multiple times throughout the process when particular concepts were considered. All transcripts and field notes were also read by two other research team members, and initial impressions and lines of inquiry were discussed concurrently with data generation. Using a set of questions that I created based on my research questions, my theoretical perspective, and Bodgewick’s (1999) framework for writing field notes, I created a narrative interview report for each case study as suggested by Dierckx de Casterle and her colleagues (2012). Each report contained descriptions and interpretations of various aspects of each case study including the circumstances of the case; the individuals involved and their perceived roles, individual wishes or recommendations; and the different relationships between individuals in the case. Additionally, at this stage, I used a role-ordered data analysis matrix following the methods of Miles et al. (2013) to help me display the data. Role-ordered matrices are structured by the different perspectives of individuals in a situation and enable the systematic display of information about specific ideas across roles. The use of this matrix enabled me to examine the different perspectives in the data within and across individuals in the case studies. Each of the reports and the role-ordered matrices were discussed and refined with the research team. Based on the findings of my initial case reports and of the matrices, I revised, in collaboration with two research team members, the initial set of questions to add targeted analysis questions exploring concepts or relationships that had been salient in some case studies. I then revised and augmented the initial reports to answer the initial questions more comprehensively and to explore additional concepts and relationships that arose across the case analyses. Applying a critical lens, I drew up a second set of questions more explicitly focused on how autonomy was discussed and enacted within the accounts. This second set of questions prompted interrogation of various decision-making mediators and values such as the importance of the discharge destination to the participants, their perceptions of their own roles as well

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as of the roles of others in the decision-making process, and values and preferences guiding their decision-making. Additionally, at this stage, I explored the process of discharge planning and various influences on the perspectives and behaviors of individuals involved, such as underlying beliefs and assumptions. The data were again reviewed line by line. The list of questions was flexible in that based on further analysis, new questions were created to encompass the emerging ideas pertinent to the research aims. A cross-case analytical summary was prepared and shared with the research team. In collaboration, a final set of questions was devised with a specific focus on relational autonomy. I repeated the above procedures using this third series of questions. Out of this analysis, I “extracted the essential structure” (Dierckx de Casterle et al., 2012) to pull out underlying beliefs, explicit approaches, and institutional conventions that shaped individual perspectives and behaviors in discharge planning.

Study Results The use of microethnographic case study methodology from a critical social science perspective informed by relational autonomy theory shaped an analysis in which individuals were portrayed as indivisible from their social and political contexts and were influenced by various discursive elements and practices embedded in their environments. By taking such a perspective in the analysis, underlying beliefs, valued approaches, and local conventions guiding discharge planning processes and outcomes in this setting were identified. The primary findings indicated these beliefs, approaches, and conventions intersected to promote practices and attitudes that inherently marginalized older adults in the discharge planning process. Such marginalization excluded older adults from discharge planning and inherently disallowed them from making what were perceived by the involved healthcare professionals to be risky choices. The intersection of these same influences also prioritized assessments and interventions geared toward discharge, at the expense of interventions aiming to maximize function; however, maximizing function is a stated aim of rehabilitation services both locally and in rehabilitation more broadly (World Health Organization, 2011, pp. 95). In the research setting, through a lack of interventions aimed toward this end, older adults were not being enabled to maximize their potential to return home as independently and safely as might be possible. Through the practices of making recommendations for discharge early in the inpatient stay and of prioritizing safety, healthcare professionals made frequent recommendations of 24-h care, even in instances where such recommendations may not be appropriate. Discourses of aging focused on a loss of agency were reinforced though practices that essentially excluded older adults from decision-making and disallowed decisions deemed to be risky. Pervasive beliefs about older adults invariably experiencing functional decline were realized since older adults were not provided with sufficient opportunities to recuperate and maximize their functional status before their discharge and, as such,

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were frequently recommended to have 24-h care, even in instances when such recommendations may not have been warranted. Through these practices and processes, ageism was evident and replicated, and older adults’ autonomy was compromised in that they were denied the same personal freedoms available to other citizens.

Benefits and Challenges of Using Microethnographic Case Studies Microethnographic case studies facilitate the examination of a phenomenon within a specific context and through a focus on the experiences, perspectives, and behaviors of one or a small number of individuals (Willis, 2007). Critical bioethical approaches engender the examination of social and political influences on phenomena through the lens of a bioethical theory. Relational autonomy theories are based on the idea that individuals are socially embedded within, and are indivisible from, the different layers of their contexts (MacKenzie & Stoljar, 2000; Sherwin, 1998). The use of this perspective, methodology, and specific theory promoted an in-depth examination of the discharge planning process within the social, political, and institutional context and allowed for an exploration of various influences on the individual behaviors and perspectives of older adults, family members, and clinicians. As with ethnographic methods, microethnographic case studies required immersion in the context in order to glean a deep understanding of the discourses, practices, processes, and norms existing, being reproduced and evolving in this context. Data generation with more traditional ethnography is not structured and can at times be quite broad and can feel overwhelming (Hammersley and Atkinson, 2003). Focusing specifically on cases through a microethnographic approach enables more of a structure to the immersion, the observations, and the data generation. The data generation in a microethnographic approach will involve specific activities and focused observations that to a certain extent can provide a level of organization to the data generation thereby enabling researchers to conduct more focused and refined studies. In relation to the amount of time dedicated to the study, ethnographic methods traditionally require a lengthy immersion in the context to enable the breadth and depth of observation required to answer the research questions. The focus on cases in a microethnographic case study approach, and the boundaries placed on the phenomenon of interest and the cases at hand, can guide the data generation to be conducted in a shorter period of time without loss of depth required to answer the research questions. The repetition of the data generation process for the multiple cases and the concurrent nature of data generation and analysis can guide the researcher to identify salient aspects of the phenomenon of interest early in the data generation, which can guide more in-depth probing of such aspects in later data generation. The repetition of the process further enables the researcher to sharpen their approach as they become more skilled at generating the data. Risks associated with this iterative method, however,

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include a data generation and analysis process that is rote and in which unique or significant aspects of the data could be missed as they arise. The use of a microethnographic approach with multiple data sources for each case can enable an in-depth examination of the different influences on individual perspectives, choices, and behaviors and how these manifest in dynamics and interactions in the phenomenon of interest. A better understanding of such dynamics can bring to light challenges that might exist, but that may be difficult to identify and can inform healthcare approaches that reduce such challenges. A challenge related to the study, which is partially related to the methodology is that there while there was a heavy focus on social aspects of the context at the microlevel and on social, political, and institutional aspects of the context at the mesolevel, there was not the same focus on social, political, and institutional aspects of the macro-level in the data generated. For example, although social values that could align with macro-level values prevalent in the province or country were discerned in the data but were not explored directly with participants. These were considered in the analysis and contextualization of the study analysis results (Durocher et al., 2015, 2016, 2017), but engagement with participants about these would have been beneficial. Such engagement may have been possible if deeper analysis of the data could have been completed earlier in the data generation, enabling probing of these issues in subsequent cases, or if more cases were completed, again, allowing for such dimensions to arise in the analysis in the same timeframe, but having more time later for them to be considered in subsequent (in this case additional) cases. This is related to the methodology in the sense that there is a significant focus in the methodology on the context, but the context for some phenomena of study can be highly complex and layered, and an examination of the multiplicity of different dimensions can be substantial to the point of becoming unwieldy.

Conclusion The use of microethnographic case study methodology can guide research to answer specific questions about processes, practices, actions, and behaviors within complex environments. While not used extensively to date and while most published examples focus on research in the educational field, this methodology has also been used successfully to enable the excavation of underlying beliefs, valued approaches, and local conventions that were influencing discharge planning processes with older adults in a rehabilitation setting. The approach can further incite an exploration of how influences co-constitute one another to reinforce and reproduce each other. The use of microethnographic case study methodology can bring to light how the intersection of various systems of thoughts, norms, and expectations influence interpersonal dynamics that shape behaviors, processes and practices, as well as the experience and outcomes of such phenomenon for various stakeholders. Microethnographic case study approaches can furthermore enable the examination of how discourses and conventional processes promoted attitudes and practices encourage marginalization

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and oppression of particular individuals or groups and the prioritization of systemic and institutional values over the values, needs, and preferences of such individuals. Such a methodology has the potential to guide much needed rehabilitation research to answer complex questions in ways and to depths that other methodologies may not enable.

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Friedman, M. (2000). Autonomy, social disruption and Women. In C. Mackenzie & N. Stoljar (Eds.), Relational autonomy: Feminist perspectives on autonomy, agency, and the social self (pp. 35–51). Oxford University Press. Friedrich, A. (2020). Addressing complex hospital discharge by cultivating the virtues of acknowledged dependence. Theoretical Medicine and Bioethics, 41, 99–114. Flyvbjerg, B. (2011). Case study. In N. Denzin & Y. Lincoln (Eds.), The Sage handbook of qualitative research (4th ed., pp. 301–316). SAGE Publications. Green, J., & Thorogood, N. (2009). Qualitative methods for health research. 2nd ed. SAGE Publications. Hammersley, M., & Atkinson, P. (2003). Ethnography. Routledge Publishing. Harvey, L. (2013). Social research glossary. Quality Research International. Retrieved from: http:// www.qualityresearchinternational.com/socialresearch/csr.htm Hedgecoe, A. (2004). Critical bioethics: Beyond the social science critique of applied ethics. Bioethics, 18(2), 120–143. Hellerman, J. (2006). Classroom interactive practices for developing L2 literacy: A microethnographic study of two beginning adult learners of English. Applied Linguistics, 27(3), 377–404. Huby, G., Holt Brook, J., Thompson, A., & Tierney, A. (2007). Capturing the concealed: Interprofessional practice and older patients’ participation in decision making about discharge after acute hospitalization. Journal of Interprofessional Care, 21(1), 55–67. Kesselring, A. (2004). The inclusion of visual art in home education: A qualitative microethnographic case study (Publication No. 70519280) [Master’s thesis, California State University, Long Beach]. Masters Abstracts International. Kvale, S., & Brinkman, S. (2009). Interviews: Learning the craft of qualitative research interviewing. SAGE Publications. Lavis, J. N., and Mattison, C. A. (2016). ‘Introduction and overview’, in Lavis, J.N. (Eds.), Ontario’s health system: Key insights for engaged citizens, professionals and policymakers (pp. 17–35). McMaster Health Forum. Mackenzie, C. (2008). Relational autonomy, normative authority and perfectionism. Journal of Social Philosophy, 39(4), 512–533. Mackenzie, C., & Stoljar, N. (2000). Introduction: Autonomy refigured. In C. Mackenzie & N. Stoljar (Eds.), Relational autonomy: Feminist perspectives on autonomy, agency, and the social self (pp. 3–34). Oxford University Press. Merriam, S. (1998). Case study research in education: A qualitative approach. Jossey-Bass. Miles, M., Huberman, M., & Saldaña, J. (2013). Qualitative data analysis. 3rd ed. SAGE Publications. Potthoff, S., Kane, R., & Franco, S. (1997). Improving hospital discharge planning for elderly patients. Health Care Financial Review, 19(2), 47–72. Sherwin, S. (1998). ‘A relational approach to autonomy in health care,’ in Sherwin, S. (Coordinator) The politics of women’s health: Exploring agency and autonomy (pp. 19–47). Temple University Press. Sherwin, S. (1989). Feminist and medical ethics: Two different approaches to contextual ethics. Hypatia, 4(2), 57–72. Sherwin, S., & Winsby, M. (2010). A relational perspective on autonomy for older adults residing in nursing homes. Health Expectations, 14, 182–190. Swidler, R., Seastrum, T., & Shelton, W. (2007). Difficult hospital inpatient discharge decisions: Ethical, legal and clinical practice issues. The American Journal of Bioethics, 7(3), 23–28. Twine, R. (2010). ‘Broadening the feminism in feminist bioethics’, in Scully, J., Baldwin-Ragaven, L., & Fitzpatrick, P. (Eds.) Feminist bioethics; At the centre, on the margins, (pp. 45–59). Johns Hopkins University Press. Wells, D. (1997). A critical ethnography of the process of discharge decision making for elderly patients. Canadian Journal on Aging, 16(4), 682–699. Willis, J. (2007). Foundations of qualitative research: Interpretive and critical approaches. SAGE Publications.

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Wong, S., Sharda, N., Zietlow, K., & Heflin, M. (2020). Planning for a safe discharge: More than a capacity evaluation. Journal of the American Geriatrics Society, 68(4), 859–866. World Health Organization. (2011) World report on disability. [Online] Available at: http://whqlib doc.who.int/publications/2011/9789240685215_eng.pdf. Yin, R. (2018). Case study research: Design and methods, 6th ed. Thousand Sage Publications.

Chapter 4

Ethics of Conducting Research on People with Disabilities or in Rehabilitation D. B. Resnik and Paul M. W. Hackett

Abstract Research on people with disabilities or in rehabilitation can raise some challenging ethical issues for investigators because prospective or enrolled participants may have losses of cognitive function or difficulties with communication that compromise their ability to consent to research participation. This chapter will review some key ethical principles and dilemmas in research with human subjects and discuss some issues that arise when conducting research with people who have disabilities or are in rehabilitation. We conclude by considering the ways in which specific ethical issues can arise in ethnographic health research. Keywords Disability · Rehabilitation · Ethnographic research · Ethics · Informed consent · Vulnerable populations · Ethical review

Introduction Research on people with disabilities or in rehabilitation can raise some challenging ethical issues for investigators because prospective or enrolled participants may have losses of cognitive function or difficulties with communication that compromise their ability to consent to research participation. This chapter will review some key ethical principles and dilemmas in research with human subjects and discuss some issues that arise when conducting research with people who have disabilities or are in rehabilitation. We conclude by considering the ways in which specific ethical issues can arise in ethnographic health research.

D. B. Resnik (B) · P. M. W. Hackett National Institute of Environmental Health Sciences, National Institutes of Health, Maryland, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_4

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Historical Background Most government regulations and ethical guidelines for research with human subjects were adopted in response to morally disturbing or abhorrent treatment of human subjects that occurred in the past. To better understand the rationale for regulations and ethical guidelines, it will be useful to briefly review some of cases of immoral research that helped to shape the current oversight system. Since ancient times, medical practice was conservative and protective. Western physicians followed the Hippocratic Oath, which instructs adherents to “do no harm.” Because medical experimentation could harm patients, physicians tended to prescribe relatively benign treatments, such as herbal remedies, special diets, exercise, rest, and massages. Medicine began to change during the Scientific Revolution (circa 1543–1750) as physicians, such as Andreas Vesalius (1514–1564), William Harvey (1578–1657), and Edward Jenner (1749–1823), sought to apply experimental and quantitative methods to medical practice (Resnik, 2018). Harvey, for example, developed techniques for recording blood pressure and used tourniquets to demonstrate that blood flows from veins back to the heart. Harvey also performed vivisections on animals to prove that the heart pumps blood (Resnik, 2018). As medicine became more experimental, many physicians began to regard every encounter with a patient as an “experiment” in which they could learn something new about the human body or medical practice. During the 1800s and early 1900s, physicians and patients did not clearly distinguish between medical research and medical practice. Also, during this time, informed consent had not emerged as an important ethical and legal requirement in medicine. As a result, physicians often experimented on their patients, especially those who were mentally ill or disabled, without their consent (Resnik, 2018). For example, in 1874, English physician Robert Bartholomew (1831–1904) was treating Mary Rafferty, a thirty-year-old mentally disabled patient, for cancer. Rafferty had a two-inch hole in her skull that had been produced by a cancerous ulcer. Bartholomew took advantage of this unique opportunity to study the human brain and inserted electrodes into Rafferty’s open wound, so that he could stimulate her brain electrically and record her responses. Bartholomew observed that small amounts of electric current caused different parts of Rafferty’s body to move, depending on the site of the stimulation, and that larger amounts of current caused pain. Rafferty began to experience distress, convulsions, and seizures and died days after the experiments began (Resnik, 2018). In 1897, Italian physician Giuseppe Sanarelli (1864–1940) was trying to identify the cause of yellow fever. Sanarelli had isolated a bacterium from the blood of patients with the disease and believed it to be the cause of yellow fever. To test his hypothesis, Sanerelli injected the bacteria into five of his patients without their consent. All five patients developed yellow fever symptoms and three died. While Sanerelli’s experiments generated moral outrage from physicians, it did not lead to any immediate changes in legal or ethical rules for research.

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Not all medical research conducted during this era was unethical, however. In his highly influential book, Introduction to the Study of Experimental Medicine, published in 1865, French physiologist Claude Bernard (1813–1878) argued that there are moral constraints on experiments that may be performed on human beings (Bernard, 1957). Also, members of the American Medical Association debated about the ethics of medical research, although the organization did not adopt ethics guidelines until 1946 (Resnik, 2018). In the early 1900s, US Army physician Walter Reed (1851–1902) conducted experiments in Cuba that were designed to determine whether Aedes aegypti mosquitos carry the pathogen that causes yellow fever. The participants in Reed’s experiments consisted of 16 US soldiers, two US civilians, and 18 Spanish immigrants. In these experiments, Reed asked participants, who had never had yellow fever, to allow themselves to be bitten by mosquitos that had fed on patients with active yellow fever. 16 participants contracted yellow fever from mosquito bites, and six people died from the disease, including Jesse Lazear, one of Reed’s collaborators. Reed himself had planned to volunteer for the experiment, but one of his collaborators convinced him otherwise, because Reed was 40 years old and age was known to increase the risk of dying from yellow fever (Resnik, 2018). Although Reed’s experiments exposed subjects to life-threatening risks, the subjects participated out of their own free will. Reed asked participants to sign consent documents and informed them that the experiments involved significant risks, including the risk of death. The consent forms were translated into Spanish for the participants who did not speak English. Volunteers received $100 in gold for their participation and free medical care if they contracted yellow fever. Reed was the first investigator to use a consent form to enroll participants in medical research (Resnik, 2018). A significant turning point in the ethics of research with human subjects occurred during World War II, when German and Japanese researchers conducted horrific experiments on prisoners without consent. Thousands of people died or suffered from permanent harm or disability as a result of these experiments. German scientists and physicians conducted experiments on concentration camp prisoners, mostly people of Jewish ancestry. Some of these experiments included: exposing subjects to electricity, radiation, extremes of temperature or pressure; wounding subjects to study healing; exposing subjects to pathogens to study vaccines; and injecting dye into subjects’ eyes in order to change eye color. Japanese scientists conducted research on Chinese prisoners or war, including biological and chemical weapons experiments and vaccination and wound healing studies (Resnik, 2018). At the end of the war, the Allied forces held trials in Nuremberg, Germany, for German political and military leaders accused of war crimes, including scientists and physicians who experimented on human beings. The War Crimes Tribunals adopted the Nuremberg Code (1949) to serve as a document for prosecuting researchers accused of war crimes committed against human subjects. The Nuremberg Code, which was the first internationally recognized ethical guideline for research with human beings, set forth ten ethical principles, including the requirement that subjects should provide their voluntary consent to participate in research and that studies

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should have social value and be designed to minimize risks to participants (Nuremberg Code, 1949). Unlike their German counterparts, Japanese researchers were never put on trial for their war crimes against Chinese prisoners of war, because the USA had agreed not to prosecute them in exchange for access to data from their chemical and biological weapons experiments (Resnik, 2018). In 1964, the World Medical Association adopted ethics guidelines for medical research, known as the Helsinki Declaration, which have been amended nine times since then (World Medical Association, 2013). The guidelines address numerous topics related to the ethics of medical research, such as consent, risk minimization, social value, rigorous scientific design, and the use placebo control groups. Guidelines adopted by the Council for Council for the International Organizations of Medical Sciences (2016) also are an important source of guidance. In 1966, physician American Henry Beecher (1904–1976) published an article in the New England Journal of Medicine describing 22 studies involving human subjects that he claimed were unethical. Studies mentioned in Beecher’s article included the Willowbrook hepatitis experiments and Tuskegee Syphilis Study (Beecher, 1966). The Willowbrook experiments, which took place from 1956 to 1980 at the Willowbrook State School for Mentally Retarded Children in New York, are particularly relevant to this chapter, because they involved people with disabilities. In these experiments, which included 700 human subjects, researchers infected mentally disabled children with a mild form of viral hepatitis upon admission to the institute to determine whether this would provide them with immunity against a stronger form of this disease. The study also included a control group who were not intentionally infected. Although many would regard intentionally exposing healthy children to a disease to be unethical, the researchers argued that getting infected with a mild form of the disease was potentially beneficial to the research subjects, because it could protect them against a stronger form of the disease, which was endemic at Willowbrook. Parents signed consent forms to allow their children to participate in the study, which had been approved by the New York State Department of Mental Health and several other committees (Resnik, 2018). The Tuskegee Syphilis Study, which was funded by the US Public Health Service, took place from 1932 to 1972 in Tuskegee, Alabama. The goal of the study was to better understand the progression of late-stage syphilis in African American men. Syphilis had not been well-studied in African Americans, and physicians often had trouble recognized the signs and symptoms of the disease in this population. Since treatment for syphilis would interfere with the natural course of the illness, the 399 subjects in the experimental group did not receive an effective treatment for the disease, even when penicillin (an effective medication for syphilis) became widely available in the late 1940s. Moreover, researchers steered subjects away from clinics where they could receive an effective treatment. The subjects were never told that they were in an experiment; most of the subjects thought that they were receiving treatment for “bad blood.” However, the treatment they got consisted of little more than medical examinations and routine care for diseases other than syphilis. Although Beecher alerted medical professionals to the study in his 1966 article, the study did not receive national attention until 1972, when Peter Buxton, a Public Health

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Service employee, informed the Associated Press about it. The study soon made national headlines and was stopped. In 1973, the US government settled a lawsuit with surviving research subjects and families of the deceased, and in 1997, President William Clinton issued an official apology to study participants and their families on behalf of the US government (Resnik, 2018). The Tuskegee Study also marked an important turning point in the ethics of research with human subjects, because public outrage over the study motivated Congress to hold hearings on the ethics of research with human subjects. In 1973, Congress passed the National Research Act, which authorized federal agencies to develop regulations for research involving human subjects. The act also created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1979), which issued a highly influential document on research with human subjects known as the Belmont Report. The Report articulated three ethical principles for human subjects—respect for persons, beneficence, and justice; distinguished between research and therapy; and provided a conceptual foundation for major revisions of the federal regulations that became effective in 1981 (Resnik, 2018). The federal research regulations have been revised several times since then, mostly recently in 2017. The Department of Health and Human Services’ regulations (2017), known as the Common Rule, have been adopted by 17 federal agencies. The Food and Drug Administration has regulations that are similar to the Common Rule. Many other countries have also adopted regulations or ethical guidelines for conducting research with human subjects that are similar to the Common Rule (Resnik, 2018).

Ethical Principles for Research with Human Subjects Government regulations and ethical guidelines emphasize the following principles for research human subjects (Emanuel et al., 2000; Resnik, 2018): • Rigorous Design. Research studies should be scientifically well-designed so that they are likely to produce generalizable knowledge. • Qualified Personnel. Members of the research team should be well-qualified, by education and experience, to conduct the research. • Social Value. The research should be expected to produce socially valuable results, such as knowledge that can advance our understanding of human biology or behavior or has applications in medicine, public health, public policy, or other areas. • Risk Minimization. Research studies should use designs, methods, tests, and procedures that minimize physical, psychosocial, and financial risks to human subjects. • Risk Acceptability. Risks to human subjects should be reasonable in relation to the expected benefits to the subjects, such as access to medical treatment, and the benefits to society, such as the knowledge expected to be gained.

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• Informed Consent. Subjects (or their legal representatives) should provide their voluntary, informed consent to participate in research. Subjects should be free to withdraw from research at any time without penalty. Consent should be appropriately documented. Consent forms should be signed by the participant and witnessed. The participant should receive a copy of the form. • Privacy/Confidentiality. Research studies should protect the privacy and confidentiality of research subjects. • Equitable Subjection Selection. The selection of research subjects should be equitable; that is, inclusion and exclusion criteria for research studies should be based on the aims of the research or the need to protect subjects or others from harm. • Safeguards for Vulnerable Subjects. Research studies should include additional protections for research subjects who may be vulnerable to coercion, exploitation, or harm, due to their age, infirmity, mental or physical disability, institutionalization, or socioeconomic status. • Independent Review. Research studies should be reviewed and overseen by an independent committee, such as an Institutional Review Board (IRB) or Research Ethics Board (REB). Regulations and guidelines promulgate specific rules and procedures that instantiate these general principles. For example, the Common Rule includes rules pertaining to composition of the IRB and its functions, decisions, approval criteria, operations, communications, and record-keeping. The Common Rule also has requirements pertaining to informed consent, including information that must be communicated during the consent process, methods for documenting consent, conditions for obtaining consent, and rules for waiving consent or its documentation for some types of minimal risk research (Department of Health and Human Services, 2017). To decide whether to approve a proposed research study, oversight committees must have a clear understanding of the study’s aims and objectives, design, methods, procedures, tests, and interventions; personnel and their qualifications; the population under investigation; processes for recruiting and enrolling participants; methods for sharing data and biological samples; processes for obtaining and documenting consent; procedures and systems for protecting privacy and confidentiality; plans for paying research subjects for their participation; and additional safeguards for vulnerable subjects (if any). Researchers usually provide the committee with the required information by submitting various documents to the committee, including the research protocol, the investigator’s brochure (for some types of studies of experimental drugs or medical products), consent documents, advertisements, surveys, or questionnaires (if used). A committee may approve a proposed study, require changes as a condition of approval, or table a study due to lack of information or documentation. Once a study is approved, an investigator can begin the research. If an investigator plans to change (or amend) the research, he or she must obtain the committee. Some types of human subjects research, such as anonymous surveys

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and research on de-identified samples or data, may be exempt from research review under the Common Rule and other regulations.

Ethical Dilemmas in Research with Human Subjects In this chapter section, we will address ethical dilemmas as these are related to contemporary research with human subjects in a general sense. We will wait until the final section of our writing to specifically address ethnographic research issues. Although regulations and guidelines provide ample guidance for reviewing, conducting, and overseeing research with human subjects, they do not eliminate ethical dilemmas. Ethical dilemmas still arise because people may disagree about how to interpret and apply these rules or resolve conflicts among rules. Some examples of these dilemmas include: • Study Design: Is it ethical to include placebo control groups in clinical research studies when there is an effective treatment for the condition under investigation? Is it ethical to deceive research subjects in psychological and behavioral experiments to control for bias? • Risk Minimization: Is it ethical to conduct risky procedures, such as biopsies of internal organs, on patients in clinical trials, that are likely to produce useful data but are not required to achieve the aims of the study? • Risk Acceptability: Is it ethical to expose healthy volunteers to significant risks in research that offers them no medical benefits? Is it ethical to include terminally ill patients in studies with a significant risk of death and only a small chance of a medical benefit? • Informed Consent: How much information (and what type of information) should be included in consent documents? Can too much information interfere with research participation decisions? Does paying people to participate in research affect the ability to make free choices? • Privacy/Confidentiality. How can researchers share and publish data and results without compromising research subjects’ privacy and confidentiality? • Equitable Subject Selection. Is it fair to exclude some groups of subjects, such as pregnant or nursing women or children, from research in order to protect them from harm, when excluding these groups will prevent researchers from obtaining important knowledge about them?

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Conducting Research on People with Disabilities or in Rehabilitation Now that we have reviewed some generic ethical issues that arise in research with human subjects, we will consider some issues that arise in research with people who have disabilities or are in rehabilitation. Research on people with disabilities or in rehabilitation can raise some challenging ethical issues for investigators because prospective or enrolled participants may have losses of cognitive function or difficulties with communication that compromise their ability to consent to research participation. Many diseases and disabilities (e.g., dementia, traumatic brain injury, aphasia, depression, bipolar disorder, psychosis, Down’s syndrome, autism, and cerebral palsy) can diminish cognitive functions (e.g., memory, reasoning, comprehension, and judgment) that are essential for informed decision-making. Some diseases, such as Parkinson’s disease or Huntington’s disease, may lead to loss of cognitive function as part of their normal progression. Conversely, some rehabilitation patients may have cognitive deficits at the beginning of their rehabilitation that improve over time. For example, someone who is recovering from a stroke may have aphasia that diminishes over time. Some diseases or disabilities may interfere with communicative functions which are essential to the consent process. People who have problems with vision, speech, or hearing may have the ability to make informed decisions but have difficulty communicating their choices to members of the research team or receiving the information they need to make choices. For example, a patient with amyotrophic lateral sclerosis (ALS) may have lost the ability to speak but still retain the ability to understand speech and think clearly. A blind person may be unable to read a consent document but could listen to and understand an oral presentation of its contents. If some of the prospective participants in a proposed study are likely to have or develop problems with decision-making or communication that can affect consent, they can be regarded as vulnerable subjects, and researchers should consider implementing additional protections to safeguard their rights and wellbeing. The following questions and concerns are important to consider when conducting research on these types of research subjects (Capron, 1999; Chen et al., 2002; Resnik, 2018; National Bioethics Advisory Commission 1999): • Exclusion/Inclusion of Prospective Participants. Should subjects who have problems with decision-making be excluded from the study? Ethical guidelines, such the Helsinki Declaration, recommend that unless there is a valid scientific reason for including them in a study (e.g., goals of the research are to understand the pathology of dementia), people with compromised decision-making abilities should be excluded to protect them from harm or exploitation. Conversely, others have pointed out that routinely excluding people with compromised decisionmaking abilities from research is problematic because it prevents scientists from obtaining knowledge that could benefit members of that population. There is an ethical tension, therefore, between protecting vulnerable people from harm or exploitation and benefitting members of that population. One way of handling

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this dilemma is to include people with compromised decision-making in research if it responsive to the needs of members of the group or cannot be conducted validly without including members of the vulnerable group. Assessment of Decision-Making Capacity. How will decision-making ability (or capacity) be assessed? When will it be assessed? At enrollment? At other times, as appropriate? Who will assess decision-making capacity? Members of the study team? An independent consultant, such as a psychologist? Will decisionmaking capacity be assessed by means of well-validated, standardized tools? A potential problem with using members of the research team to assess decisionmaking capacity is that making the determination that someone lacks the capacity to consent may negatively impact enrollment, and researchers have an interest in increasing enrollment. One way of dealing with this potential bias is to use standardized tools to assess decision-making capacity for most studies and rely on an independent consultant for riskier ones. When assessing decision-making capacity, it is important to remember that there is likely be considerable variation in the cognitive abilities of members of the study population and that decisionmaking capacity is not all or none but comes in degrees. Some participants may have no difficulties with consent; others may be able to consent with the help of a family member; some may not be able to consent at all. Legally Authorized Representatives. If a prospective subject does not have sufficient decision-making capacity to consent to study participation, how will the research team identify a legally authorized representative, such as an immediate family member or guardian to provide consent? What will the research team do if a legally authorized representative (LAR) is not available and the study offers significant medical benefits to the subject, such as treatment for a lifethreatening condition? Note: State and local laws determine who can serve as a legally authorized representative. Assent. Will the participant be informed about the research and asked to assent to participation if they do not legally consent? If the participants will assent, will they receive a sign a separate assent form? What will the research team do if the legally authorized representative consents, but the participant refuses to assent? Note: It is standard practice for children over age 7 to be asked to assent to research and to sign an assent form. It is also standard practice to honor their decision not to participate unless the research offers them substantial medical benefits. Advance Directives. Will subjects who have a significant chance of losing decision-making capacity during the study have an opportunity to sign an advance directive expressing their desire to continue participating in the study or to enroll in similar studies, if they cannot make these decisions for themselves? Who will discuss the advance directive option with participants if it is available? Reading difficulties. What will the research team do if a prospective participant has difficulty reading the consent form, due to vision problems or illiteracy? A reasonable option in this situation if for the person obtaining consent to read the form to the prospective participant and discuss it with him or her. The participant can sign the form, and a witness should also sign it and affirm that it has been read

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to the participant, that the participant has had an opportunity to ask questions, and that participant has freely consented. If the study population is blind, it would be advisable to record the consent form on an audio format or translate it into braille. • Withdrawal from the Study. Will participants who lose decision-making capacity during the study be withdrawn? Will they remain in the study but not participate in risky procedures? • Reconsent. If subjects gain the capacity to make decisions during the study, will they be given the opportunity to reconsent if someone else has consented for them? How will members of the research team identify subjects who have gained the capacity to consent during the study? • Research vs. Therapy. Some prospective participants (or their legally authorized representatives) may fail to understand the difference between research and therapy. They may believe that the main purpose of the study is to provide participants with medical benefits rather than to develop generalizable knowledge. This misunderstanding, known as the therapeutic misconception, may be more prevalent when the participants are terminally or seriously ill, since they may be desperately seeking a cure for their disease and may be willing to try anything that might help. Investigators should ensure that participants understand that the purpose of the study is to develop knowledge not to provide participants with medical benefits.

Conducting Ethnographic Research on People with Disabilities or in Rehabilitation In the previous section, we addressed some ethical considerations for conducting research with participants who may be disabled or in rehabilitation. In this section, we will address some ethical issues unique to ethnographic research, the most important of which is IRB review of ethnographic research. We view this issue as the most important, because if an ethnographer cannot get an IRB to approve his or her study, it will not move forward. To understand why IRB review of ethnography can be problematic, we need to briefly discuss how IRB review of research normally works. For the most part, IRB review follows the biomedical model (Murphy & Dingwall, 2007), in which the IRB reviews a research protocol that clearly describes: • The study’s aims, objectives, hypotheses, methods, procedures, tests, endpoints (i.e., measurable outcomes or variables), and personnel • Statistical considerations, such as sample size and plans for analyzing the data • The participant population (i.e., who will give consent or have consent given via an LAR) • The recruitment methods and procedures • The consent process (i.e., how, when, and where consent will take place; and who will obtain consent)

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• The ability for participants to withdraw and other protections from coercion or undue influence. The IRB also reviews a consent document that describes: • • • • •

The nature and duration of the research Research methods, procedures, and tests Risks and benefits of the research Confidentiality protections Alternatives to research participation.

Unless the IRB waives consent, consent must be obtained from human subjects or their LAR. The Common Rule defines a human subject as follows: Human subject means a living individual about whom an investigator (whether professional or student) conducting research: (i) Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens; or (ii) Obtains, uses, studies, analyzes, or generates identifiable private information or identifiable biospecimens (Department of Health and Human Services 2017 at 45 CFR 46.102e1).

Private information is defined as follows: Private information includes information about behavior that occurs in a context in which an individual can reasonably expect that no observation or recording is taking place, and information that has been provided for specific purposes by an individual and that the individual can reasonably expect will not be made public (e.g., a medical record) (Department of Health and Human Services 2017 at 45 CFR 46.102e4).

Several commentators have argued that ethnographic research does not fit the biomedical model well (Haggerty, 2004; Murphy & Dingwall, 2007; Schrag, 2010). Since other chapters in this book describe ethnographic research methods in considerable detail, we will provide only a brief synopsis here to show they can create problems for traditional IRB review. Ethnographic methods involve observing people in a natural setting (i.e., fieldwork) to learn about the norms, traditions, and practices of a particular society, culture, or community (such as an African village, a hospital war, or scientific laboratory). Ethnographers embed themselves in the research environment and spend a considerable amount of time (e.g., often a few months or years) collecting data from various sources, such as interviews, informal discussion, documents, and observations of behavior. Ethnography adopts an inductive, iterative approach to knowledge development and often has no specific endpoints, hypotheses, or aims. With this type of research design, it is extremely difficult to specify the participant sample in advance. Success in ethnography depends a great deal on building the trust of the human participants (or hosts): As the hosts gain trust in the researcher, they are more likely to share confidential information with him or her and invite him or her into private settings (Murphy & Dingwall, 2007). The first problem that occurs when one tries to apply the biomedical model of IRB to ethnography is that ethnographic studies often do not have specific aims,

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hypotheses, or endpoints or, if they do, aims, hypotheses, and endpoints may evolve as the researcher learns more about the population being studied (Murphy & Dingwall, 2007). Also, statistical considerations, such as sample size and data analysis plans, may be absent from ethnography protocols or left open-ended. These issues, while important, do not pose significant difficulties for IRB review, provided that IRB members understand that scientific methods in ethnography are different from methods of clinical investigation, experimental psychology, or other biomedical disciplines. If IRB members are not familiar with ethnographic methods, they can rely on outside consultants to determine whether the study they are reviewing is well-designed. The protocol could include very general goals, such as to learn more about norms, traditions, and practices of the population being studied, with the understanding that specific aims and hypotheses may be in flux. Of greater concern are issues related to informed consent in ethnography. During fieldwork, valuable information may be obtained, informally, in many different ways, from people who are in the research setting, even though they have not been specifically recruited for the study or have provided consent. People often share this information voluntarily, as part of their normal interactions and conversations in the research setting. For example, a researcher who is studying rehabilitation patients in longterm care facility may obtain valuable, unsolicited information by overhearing a conversation between a relative who is visiting a patient and a nurse who is caring for the patient. The information shared during such conversations could be private (e.g., information about health conditions) or non-private (e.g., information about how many rooms there are at the facility). The information could be shared in a public place, such as a hallway, or a private setting, such as hospital room. Under the traditional biomedical model, the researcher should describe these types of study participants in the protocol and explain how they will be recruited and provide consent. The protocol should also explain how consent will be documented. Consent would be required if the researcher obtains identifiable private information from people. Consent would not be required if the researcher obtains information that is not private or not identifiable, or, if private and identifiable, has been disclosed in a place where the people cannot reasonable expect that no observation or recording is taking place (i.e., in a public place). As one can readily see, this biomedical model of consent makes little sense in ethnography. An ethnographer who is writing a research protocol cannot always identify a priori who the participants will be, where encounters will take place, what kind of information they will provide, and how the information will be useful to the study (Simpson, 2012). An ethnographer who is conducting research in the field cannot stop and obtain consent from every person who volunteers identifiable private information, as this would interfere with normal interactions and disrupt conversations. Ethnographic research would be impossible if strict adherence to the biomedical model of consent was required. How should ethnographers deal with these issues? We believe that consent is an essential ethical principle in human research and ethnographers should therefore strive to obtain consent, to the extent that this appropriate and practical (Murphy & Dingwall, 2007). For example, ethnographers can obtain consent from specific parties

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who more are directly impacted by research, such as persons who are in leadership positions in host organizations and persons who are providing interviews. If a researcher is planning to do some fieldwork at a rehabilitation center associated with the hospital, he or she could obtain consent from the leadership of the rehabilitation center and hospital as well as individuals interviewed as part of the study. The hospital could inform staff about the study. If the researcher plans to follow doctors on their morning rounds at the center, the researcher could obtain consent from the doctors, and the doctors could inform their team that an ethnographer is shadowing them. The researchers can describe these consent processes in the protocol they submit to the IRB. We think the IRB should be willing to accommodate the types of interactions that occur in ethnography. One way of doing this would be to waive consent for people in the research setting who voluntarily disclose identifiable, private information. Participants who are interviewed by the researchers and hosts would still provide consent. The Common Rule allows the IRB to waive or alter consent when the risks of research are minimal and the research cannot practicably carried out without the waive or alteration (Department of Health and Human Services 2017 at 45 CFR 46.116f3). We believe that ethnographic research could not be practicably carried out with a waiver of consent for certain types of participants and that the risks of the research will almost certainly be minimal, especially if the researcher takes appropriate steps to protect confidentiality, such as not writing down their names when he or she makes notes on what they said. Of course, waiving consent for some of these interactions puts a great deal of trust in the ethnographer to avoid harming, disrespecting, or exploiting the people they are studying. Some have argued this implies that ethnographic research works with a broader conception of ethics than other types of research, so that ethnographers make decisions to protect human participants guided by general ethical principles, such as those found in the Belmont Report (discussed above or philosophical and political moralities (see for example: Lambek, 2012; Mookherjee, 2012) and the guidance provided by professional organizations such as the American Anthropological Association 2012; or the UK Association of Social Anthropologists, 2011). It is also worth noting that obtaining informed consent, it has been claimed, can be understood to be an activity with which the researcher engages primarily to mitigate their own legal liability. For instance, Fassin (2006) claims that the IRB model and process does not necessarily address the ethical questions an ethnographer has to deal with in an ongoing manner through a research project. Furthermore, the IRB process may offer false assurance that it is possible to identify the correct answers to all of the moral issues, ethnographers may encounter and that the ethical practices are specified in the IRB process are followed throughout a study. We do not wish to be dismissive of the IRB process as the above caveats seem to imply. Presenting research designs to an IRB and obtaining informed consent are vital aspects of ethical research with human subjects. However, we suggest that ethical ethnographic research may require the researcher to maintain continued ethical awareness of such issues throughout his or her research.

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Ethnographic research is particularly prone to the above-mentioned ethical difficulties as the nature of its research means that it is commonly addressing new situations and activities, with both participants and the researcher engaged in participant observation and having unclear or ambiguous obligations and commitments within the research context. These difficulties are particularly challenging in terms of a researcher’s relations with participants when conducting field observations. Another problem that may arise when conducting ethnographic fieldwork is the authority of the ethnographer and their relationships with participants. When conducting research, the ethnographer may be seen by participants as being part of an organization with whom the researcher is collaborating. For example, when working in a rehabilitation facility to attempt to understand the experiences of those using the facilities services, the researcher may be seen by participants as being part of the unit’s staff. There is an imbalance in power between researchers and participants in all research, but in the fieldwork situation, this asymmetry is enhanced (see, Hackett & Schwarzenbach, 2015, 2020) as is the emotional imbalance between researcher and participant (Sundberg, 2014). When conducting fieldwork, an ethnographer becomes enmeshed in the relationships that participants have within the context of a research study, and these often-close relationships present another ethical dilemma for the researcher. Ethnographers must build trust with the people they are working with and studying and to establish and maintain mutual respect over time. Here, an ethical problem may arise related to the researcher encountering attitudes and behaviors that are counter to their own. For instance, a person receiving rehabilitation may express racist or gender-based slurs toward a member of staff who is providing their care. Another ethical issue encountered in ethnography relates to how a researcher protects the identity of participants. This issue is similar to confidentiality/privacy issues faced by all researchers who conduct human subjects research. Here, the ethnographer may offer participants anonymity or confidentiality, where the first means that all identifying features of a participant will be removed (or none are gathered) and in the latter that the identity of an individual is known only by those in the research team. When conducting anonymous research, it should be remembered that this will mean that any data that may identify a participant will have to be omitted and this may affect the perceived validity of the study. Anonymizing research has become more problematic in the age of social media which offers a way in which researchers may have their location traced. This is especially true if the ethnographer is participating in an event that can be searched for and found online and may associate the researcher with participants (Saunders et al., 2015). Finally, there are ethical implications of writing and publishing an ethnographic research study. One of the most obvious of these is how the information will be interpreted and presented by the researcher. This relates back to the earlier point that was addressed about when researchers may encounter values, beliefs, attitudes, and actions that run counter to their own. Bracketing may help readers to understand how the presence of the researcher has an intimate relationship with the information presented. An additional concern relates to potential adverse effects from publication, since findings from a study could lead to bias or stigma against the population being studied.

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For example, if an ethnographer discovers that some nurses in a rehabilitation center have racist attitudes, publication of this finding could have damaging effects on the rehabilitation center. Ethnographers should discuss publication issues with their host to make sure there are no misunderstandings and their hosts are comfortable with the publication of potentially embarrassing findings.

Conclusion This chapter has reviewed some of the ethical and legal issues in research on people with disabilities or in rehabilitation in both general and ethnographic researches. There may be some other issues that we have not covered in this chapter, but hopefully, we have discussed the main ones. Investigators who are planning to conduct ethnographic research with people who have disabilities or are in rehabilitation should discuss issues that have not been resolved in this chapter with research ethics committees at their institutions and with other ethnographers. Acknowledgements This research was supported by the Intramural Program of the National Institute of Environmental Health Sciences (NIEHS), National Institutes of Health (NIH). It does not represent the views of the NIEHS, NIH, or US government.

References Association of American Anthropologists. (2012). Principles of professional responsibility. Available at http://ethics.americananthro.org/category/statement/. Accessed May 30, 2021. Association of Social Anthropologists. (2011). Association of Social Anthropologists of the UK and the Commonwealth (ASA) ethical guidelines for good research practice. Available at https:// www.theasa.org/downloads/ASAethics guidelines 2011.pdf. Accessed May 30, 2021. Beecher, H. (1966). Ethics and clinical research. New England Journal of Medicine, 274(24), 1354–1360. Bernard, C. 1957 [1865]. Introduction to the study of experimental medicine. Dover. Capron, A. (1999). Ethical and human rights issues in research on mental disorders that may affect decision-making capacity. New England Journal of Medicine, 340(18), 1430–1434. Chen, D. T., Miller, F. G., & Rosenstein, D. L. (2002). Enrolling decisionally impaired adults in clinical research. Medical Care, 40(9 Suppl), 20–29. Council for the International Organizations of Medical Sciences. (2016). International ethical guidelines for health-related research involving humans. Council for the International Organizations of Medical Sciences. Department of Health and Human Services. (2017). 45 CFR 46: Protection of Human Subjects. Emanuel, E. J., Wendler, D., & Grady, C. (2000). What makes clinical research ethical? Journal of the American Medical Association, 283(20), 2701–2711. Fassin, D. (2006). The end of ethnography as collateral damage of ethical regulation? American Ethnologist, 33(4), 522–524.

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Hackett, P. M. W., & Schwarzenbach, J. B. (2020). Black lives matter: Birdwatching in Central Park and the Murder of George Floyd. In P.M.W. Hackett, & C. Hayre (Eds.), Handbook of ethnography in healthcare research. Routledge Publishers. Hackett, P. M. W., & Schwarzenbach, J. B. (2015). Caveats and errors within ethnographic research. In P. M. W. Hackett (Ed.), Qualitative research methods in consumer psychology: Ethnography and culture. Routledge Publishers. Haggerty, K. D. (2004). Ethics creep: Governing social science research in the name of ethics. Qualitative Sociology, 27(4), 391–414. Lambek, M. (2012). Ethics out of the ordinary. In R. Fardon, O. Harris, T. Marchand, C. Shore, V. Strang, R. Wilson, & M. Nuttall (Eds.), The SAGE handbook of social anthropology (Vol. 2, pp. 140–152). SAGE Publications. Mookherjee, N. (2012). Twenty-first century ethics for audited anthropologists. In R. Fardon, O. Harris, T. Marchand, C. Shore, V. Strang, R. Wilson, & M. Nuttall (Eds.), The SAGE handbook of social anthropology (Vol. 2, pp. 130–140). SAGE Publications. Murphy, E., & Dingwall. (2007). Informed consent, anticipatory regulation and ethnographic practice. Social Science & Medicine, 65(11), 2223–2234. National Bioethics Advisory Commission. 1999. Research Involving Persons with mental disorders that may affect decision making capacity. National Bioethics Advisory Commission. National Commission for the Protection of Human Subjects of Biomedical or Behavioral, Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Department of Health, Education, and Welfare. Nuremberg Code. (1949). Trials of war criminals before the Nuremberg Military Tribunals under Control Council Law No. 10 (Vol. 2, pp. 181–182). U.S. Government Printing Office. Resnik, D. B. (2018). The ethics of research with human subjects: Protecting people, advancing science, promoting trust. Springer. Saunders, B., Kitzinger, J., & Kitzinger, C. (2015). Anonymising interview data: Challenges and compromise in practice. Qualitative Research, 15(5), 616–632. Schrag, Z. M. (2010). Ethical imperialism: Institutional review boards and the social sciences, 1965–2009. Johns Hopkins University Press. Simpson, B. (2012). Ethical moments: Future directions for ethical review and ethnography. Journal of the Royal Anthropological Institute, 17, 377–393. Sundberg, M. (2014). Ethnographic challenges encountered in Rwanda’s social topography. Anthropologie & Développement, 40–41, 71–86. World Medical Association. (2013). Declaration of Helsinki: Ethical principles for medical research involving human subjects (2013 revision). Available at https://www.wma.net/policiespost/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-sub jects/. Accessed: July 23, 2020.

Chapter 5

Institutional Ethnography Birgit Prodinger

Abstract Rehabilitation aims to enable people with disabilities or who are likely to experience disability to participate fully in their daily lives through a set of interprofessional and multimodal measures. Yet, rehabilitation services are embedded within social and healthcare systems that shape what individuals, who are active within these systems, can and may have to do. This chapter introduces Institutional Ethnography, a critical method of inquiry, which aims to explicate what people actually do and experience and how their doings and experiences become organized within textually mediated social relations. For rehabilitation practice and research, Institutional Ethnography is a powerful method to delineate which concepts are dominating institutional practices and to explicate whether these concepts are comprehensive enough to serve not only institutional purposes but account for and respond to the realities of people’s daily lives. Keywords Institutional Ethnography · Ruling relations · Standpoint · Social organization · Work · Ontology of the social

Introduction As I start writing this chapter, we are in the midst of the coronavirus disease 2019 (COVID-19) pandemic. Children are home schooled, employees are in home office or in short-time work, some workers fear losing their job due to the economic impact of the pandemic, people in nursing homes experience a ban on visitors over months, rehabilitation clinics are temporarily closed or repurposed to support acute clinics, etc. The situation may cause isolation, frustration, fear, sorrow, hope and pleasure once preventive measures are reduced. As we go through this pandemic, countries are collecting figures on for instance infection rates, transmission paths, number of people in need of intensive care as well as ventilation, number of occupied beds at intensive care units and deaths related to COVID-19. These figures inform the B. Prodinger (B) Faculty of Applied Health and Social Sciences, Technical University of Applied Sciences Rosenheim, Rosenheim, Germany e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_5

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public health measures taken by the various countries in response to the pandemic. These—well intended, often restrictive, sometimes also contradictive—measures are publicly available and framed within policies or regulations so that they can be distributed and replicated at different places at different points in time by different people. Once a policy or regulation comes into effect, it shapes what individuals can and should do. Yet, the experiences of going about everyday life during this pandemic are lived and felt by each individual, likely quite differently. Individuals are living their daily lives with all the resources available to them while living up to the various demands of various actors. The knowledge about the spread of the virus based on the various figures available, and the subsequent measures taken, might be at odds with the lived experiences of individuals. Such a disjuncture between the embodied experiences of groups of individuals and textually mediated relations constitutes the area to be discovered in Institutional Ethnography. Institutional Ethnography, as a critical method of inquiry, aims to map out how texts, as for instance policies and regulations, enter into people’s everyday life and coordinate what people do and can do, as well as how their lived experiences become accounted for or overruled by these texts. From the perspective of Institutional Ethnography, institution refers to the complex of relations organized around a distinctive function such as rehabilitation, health care or education (Smith, 1987). This chapter sets first the context for the relevance of Institutional Ethnography in rehabilitation and delineates subsequently its characteristics. I deploy published examples of Institutional Ethnographies related to rehabilitation to illustrate my arguments and open up an understanding about the possibilities of Institutional Ethnography.

Rehabilitation and Institutional Ethnography All people have the right to full participation in society regardless of whether a person experiences impairments or, in interaction with the environment, disabilities or is at risk of experiencing disabilities in the future. Rehabilitation aims to enable people with disabilities or who are likely to experience disability to participate fully in society through a set of interprofessional and multimodal measures. These rehabilitative measures are provided within an institutional and political context. The context shapes how services are delivered (e.g., inpatient or outpatient rehabilitation programs or community-based programs), who delivers the services (e.g., which professionals are entitled to provide specific services), which services are delivered (e.g., which therapies are covered by healthcare insurance or plans), as well as who finances the service or program (e.g., publicly or privately funded organization). Thus, the institutional and political context also shapes access to and eligibility for rehabilitation services and programs. Consequently, the aim of rehabilitation to enable full participation of people with or at risk of disability in society is realized through the coordinated activities of various actors within the possibilities and constraints of the respective rehabilitation service or program and its institutional and political context. Individuals in need of rehabilitation live their daily lives with

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different capacities that may change over time. The impact of any impairments or disability will vary between individuals. Some fear losing their jobs, some encounter restrictions in participating fully in social life, some are grateful for the various support received, some experience continuously pain, etc. Rehabilitation professionals are held accountable for their work and, thus, record continuously what they do and report to relevant stakeholders. At the same time, professionals may face various tensions in practice: some get frustrated as they are limited in realizing a truly client-centered approach given their institutional context; some have to argue whether the refunds they request for their services are adequate; some experience ethical tensions between their professional obligations and personal beliefs, etc. Each individual active within the rehabilitation context faces different demands and challenges. “[W]hat people do in light of organizational practices and schemes of accountability [that] define a particular terrain on which they act” (DeVault, 2008, pp. 4–5) and may create a disjuncture with their experiences. Institutional Ethnography focuses inquiry at such a disjuncture by examining the embodied lives behind the textual sketches within an organizational context to eventually depict how all is put together.

Characteristics of Institutional Ethnography Institutional Ethnography was developed by the Canadian sociologist Dorothy Smith. She presented it first a sociology for women (Smith, 1987) but thinks now of it as a sociology for people (Smith, 2005) since contradictions or disjunctures in for instance the health economy have sharpened for all—not only women—in varying forms (DeVault, 2008). Institutional Ethnography has been widely taken up in the North American context, increasingly also internationally, particularly in health care and social services, education as well as government systems including legal, court and prison (Malachowski et al., 2017). The foundational assumption in Institutional Ethnography is that “[i]ndividuals are there; they are in their bodies; they are active; and what they’re doing is coordinated with the doings of others” (Smith, 2005, p. 59). This statement delineates the characteristic and commitment of Institutional Ethnography to start inquiry in actual places and time, where people go actively about their daily lives and examine from there, how these doings are coordinated with the doings of others at different places and times. For the Institutional Ethnographer, this implies that the “researcher works on behalf of people who are positioned there (the standpoint) within a complex set of ruling relations to explicate a problematic” (Rankin, 2017, p. 4). The three key terms of Institutional Ethnography, namely (1) standpoint, (2) ruling relations and (3) problematic, embedded in this statement are elaborated in the subsequent sections and illustrated with examples. These examples reflect Institutional Ethnographies from the standpoint of persons seeking health care, social or rehabilitation services as well as Institutional Ethnographies from the standpoint of various health professionals.

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Ruling relations related to particular institutional practices embedded within different health systems, including Canada, Norway and England, are explicated in the selected examples.

Standpoint Institutional Ethnographers start inquiry at the standpoint of individuals in their daily lives. Standpoint is not a perspective or viewpoint taken on but rather an ontological concern. Taking the standpoint for instance of a group of people with a specific health condition or a group of professionals working in a particular setting implies that inquiry starts from the actualities of these people. People inhabiting a standpoint know about what they do ideologically and materially (Rankin, 2017). Ideologically refers to the concepts and theories people have at hand to name and describe their problems. Thinking ideologically implies thinking in a distinct way, directing attention away from actual experiences as well as confining practices of thinking and reasoning to an abstracted and conceptual level (Smith, 1990). Materially underscores that the doings of individuals take place under definite conditions, in actual time at an actual place (Smith, 2005). These “two modes of knowing” (Smith, 1987, p. 82)—ideologically and materially—are not necessarily congruent. McCoy (2021) highlighted “[t]his is a decidedly materialist ontology, in the sense of starting with attention to what is materially there, that is, from people and what they do, rather than from ideas about people, or even their ideas about themselves” (p. 37). For Smith (1987), “the epistemology must also be an ontology, a method of thinking (...) about how the social can be said to exist so that we can describe it in ways that can be checked back to how it actually is” (p. 122). For examining what people actually do, Institutional Ethnographers use the term work. Work in Institutional Ethnography encompasses anything that people do that has intent and requires time and effort (Smith, 1999). Thus, an elderly woman waiting in the waiting room for a doctor’s appointment, a young man lying awake in the bed during the night, being worried how one can live up the expectations of the employer while handling all the demands of a chronic illness and family, a student, who has just been diagnosed with a chronic condition, searching for information on his health condition and most appropriate treatment, as well as a speech and language pathologist attending a team meeting or a physiotherapist writing up a discharge letter are work in the understanding of Institutional Ethnography. This generous understanding of work and the ontology of the social (Smith, 1999) makes Institutional Ethnography distinct from other qualitative research approaches, as it calls Institutional Ethnographers to empirically describe from the standpoint of a particular group of individuals what is happening in everyday life rather than to theorize or create objective accounts about people’s doings. The Institutional Ethnographer is interested in how people go about their daily life within the realities they are situated in.

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I refer to Breimo (2015), who conducted an Institutional Ethnography to examine rehabilitation processes in Norway, to delineate the understanding of standpoint in Institutional Ethnography. In Norway, holistic rehabilitation policies were put in place around the same time as reforms in public management came into effect. Breimo aimed to examine ethnographically how this political context shapes the coordination of rehabilitation services around the individual service user. To understand how daily life works for rehabilitation service users, she conducted interviews with people receiving rehabilitation services over a period of up to two years. In addition to gaining an understanding of the rehabilitation processes from the standpoint of service users, Breimo (2015) also conducted interviews with service providers to further develop her understanding of the rehabilitation processes. Her Institutional Ethnography opened up an empirical account about a disjuncture between public management reforms and the aim of rehabilitation to enable full participation of people in society: “Their [the service users’] everyday lives must be planned according to the appointments they have with service providers. They must get up when the homecare service arrives in the morning, they must stay at home when the homecare service returns later in the day, or they must see their children off in time to make their appointment with the welfare authorities. In many ways, these appointments become what they do with their lives, because they do not have the time or energy to do much else.” (Breimo, 2015, p. 25)

This study example illustrates how starting the inquiry from the standpoint of service users and examining what they are doing in their daily lives, as well as how their doings are coordinated with the activities of others shapes what the service users can do and are expected to do. Institutional Ethnographers use interviews and participant observations to examine what is getting done and how things work in everyday life. In observing people as they go about their daily lives and talk with them how things are put together, the Institutional Ethnographer gains an understanding of the taken-for-granted doings and the individuals’ mundane work, as well as their way of talking and wording. The Institutional Ethnographer is also trying to understand how the everyday doings connect to and are coordinated with the activities of people at different sites. These connections between people and work processes at various sites are referred to as social relations in Institutional Ethnography. As the Institutional Ethnographer focuses on the social relations, he or she is oriented toward sequences of action that extend to extra- or translocal sites (DeVault, 2008). “What is especially noteworthy about Smith’s conception of local worlds and extralocal relations is that she rejects the conventional macro/micro dichotomy in favor of an ontology that treats the social as embodied in processes of coordination that operate both within and across local settings. This opens up the prospect of investigating extended social relations ethnographically rather than assigning them to a mode of analysis beginning outside of everyday experience.” (Grahame & Grahame, 2009, p. 298)

To illustrate the understanding of local and translocal sites in Institutional Ethnography, I introduce the study by Devi et al. (2020) who examined decision-making processes for people with intellectual disabilities living in supported residential environments in England. This Institutional Ethnography was conducted from the standpoint of service users, namely people with intellectual disabilities living in supported

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residential environments. Service users and support workers from three different sites were invited to participate. Interviews and participant observations were conducted over a period of 15 months. Texts, which were filled in or completed in relation to decision-making processes, such as meeting minutes, person-centered planning forms, etc., were included in the analysis. A complex and frequently occurring decision was the decision ‘to go on holidays’. This decision was elaborated on in detail by Devi et al. (2020). This study revealed that people with mild or moderate intellectual disabilities can make supported decisions, and thus, do exercise their right of legal capacity. Yet, the decision-making process is complex: When a person enters a home, he or she receives a tenancy agreement. This agreement includes a statement that a person receives support in making decisions. For each person living in such a residential environment a Person-Centered Plan (PCP) is in place to continually document what is important to a person. Once a person conveys to a support worker the wish to go on holiday, details are discussed and documented in the Resident Holiday Plan. Such details include where and when to go, for how long, with whom, where to stay, what to eat, how much money needed, etc. The Resident Holiday Plan is part of the Action Plan related to the wish to go on holiday. Subsequently, several informal support meetings take place to support the person in finalizing the holiday plan. Once this plan is finalized, a couple of forms (Resident Holiday Request and Risk Assessment) need to be filled in and submitted to the Care Manager of the Residence as well as the Housing Association. These forms are worded in third person and tailored toward the support worker than to the service user. Once the documents are forwarded to the Housing Association, its policies come into effect. In accordance with the policies of social security, these policies require the conduct of a Mental Capacity Meeting to ensure that the person understood his or her decision and its implications, as well as a Mental Capacity Assessment. The Mental Capacity Assessment is structured according to the framework of the Mental Capacity Act. Devi et al. (2020) illustrate how the activities of individuals—locally and translocally—are coordinated within social relations and ruled by texts. For Institutional Ethnographers, texts are any kind of document or representation that has a fixed and replicable character. Institutional Ethnographers look for documents that are active locally in front-line actions and can be stored, copied, transferred and distributed to become subsequently activated by users at different places at different points in time. These characteristics allow for texts to have a standardizing and mediating role in the social relations. Active texts, such as the Mental Capacity Assessment, can be replicated, they occur in time and space, constitute and organize actions and courses of actions and mediate knowledge. Such knowledge becomes then the property of organizations rather than individuals (Prodinger & Turner, 2013; Smith & Turner, 2014). In the Institutional Ethnography by Devi et al. (2020), the Mental Capacity Act enters into practice as a higher-order text. A higher-order text is invisible in practice but becomes translated into an active text, e.g., the Mental Capacity Assessment. Subsequently, the concepts laid out in the higher-order texts become enacted in daily practice. The study by Devi et al. (2020) also delineates that any changes in the decision, for instance change of holiday destination or duration, require a new Mental

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Capacity Assessment. For people with intellectual disabilities living in supported residential environments, a decision such as going on holidays becomes complex given the various actors and activities involved in this process. In some instances presented in the study by Devi et al. (2020), the process until approval lasted up to four months. The complexity of such a decision-making process becomes transparent when mapping out the social relations in which such a decision is embedded in.

Ruling Relations Within the social relations are particular relations of ruling which shape the social relations and go beyond the individual’s own consciousness. Ruling relations develop historically and represent forms of consciousness. In the study by Breimo (2015), the consciousness of the service users and providers is coordinated to and shaped by the reforms in public management. Exploring the ruling relations means disclosing particular forms of power that are diffused through textually mediated social relations. Ruling relations are not abstract but rather can be empirically explicated by examining how certain forms of consciousness enter into daily practice. The study by Devi et al. (2020) explicates how the Mental Capacity Act becomes enacted in practice through the Mental Capacity Assessment. The Institutional Ethnographer identifies texts active in everyday practice and traces its relations. The Mental Capacity Assessment in the example of Devi et al. (2020) was structured according to the framework of the Mental Capacity Act. Such ruling relations abstract the activities of individuals in everyday life into a “technological and technical specialization, elaboration, differentiation, and objectification” (Smith, 1999; p. 77). The experiences and consciousness of individuals living with intellectual disabilities as well as their support workers are coordinated by the consciousness of the Mental Capacity Act. The concepts and terms laid out in the Mental Capacity Act rule the practice of decision making. The objectification of the individual, who wishes to go on holidays, is realized through the various forms that have to be completed, including the Resident Risk Assessment and the Mental Capacity Assessment. Cupit et al. (2020) aimed in their Institutional Ethnography to examine decisions about the use of statins in cardiovascular disease prevention in general practice in England. The National Health Service (NHS) Health Check Program was launched to support cardiovascular disease prevention. The Health Check entails the calculation of a risk score. The risk score builds upon knowledge gained through the Global Burden of Diseases statistics and, thus, allows for this statistical knowledge to enter clinical practice. “The main guideline coordinating HCPs’ [health care professionals] work to score and manage an individual’s ‘overall risk’ in English primary care is the NICE [National Institute for Health and Care Excellence] guideline ‘CG181’” (Cupit et al., 2020, p. 116). To learn from the patients’ experiences and tensions that may arise in practice, Cupit et al. (2020) conducted interviews and participant observations with patients and front-line healthcare professionals. Individuals, who are

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active extra-locally, were also interviewed. Furthermore, documents, such as clinical guidelines and economic analyses, were incorporated. This Institutional Ethnography reveals how the use of guidelines, which is fostered through the evidence-based medicine paradigm in medicine, the conduct and application of risk assessments and performance measures related to reductions in the burden of cardiovascular diseases enter into and rule clinical practice. “[T]hey [risk scores] powerfully coordinate people’s activities, their energies and their consciousness (from policymaking to the frontline) in ways that, paradoxically, within a rhetoric of shared decision-making and concern to support behavioural change, preclude HCPs’ [health care professionals] capacity to respond to the subjectivities and uncertainties of individual patients–to ‘care’”. (Cupit et al., 2020, p. 127).

What happens locally, the uncertainties and concerns expressed by patients, as well as their information needs to make an informed decision are overruled by sequences of actions translocally, including the NHS Health Check Program, the NICE guideline and cardiovascular performance measures in response to the prevention of the Global Burden of Diseases. Furthermore, mechanisms are in place that foster accountability practices by health professionals rather than strengthening their clinical judgment in response to the individual health needs. These mechanisms include financial incentives and judgment of general practitioners’ performance related to risk management by local policy-makers. The experiences of the individuals become subordinated to forms of consciousness that enter into the social relations via texts and create authorized objectified accounts. The study by Cupit et al. (2020) illustrates the merit of Institutional Ethnography to explicate these textually mediated social relations and in doing so opens up an understanding of how specific forms of consciousness enter into front-line action.

Problematic The Institutional Ethnographer is interested in explicating any disjuncture between embodied knowledge of people active locally and authoritative knowledge mediated by texts translocally (Smith, 1987). Such disjuncture is referred to as problematic in Institutional Ethnography and constitutes the area to be discovered. The aim of Institutional Ethnography is not to build a theory of daily life or individuals’ experiences as situated within the social context but rather to describe empirically how things work as they do. Individuals being interviewed or observed within Institutional Ethnographies are not labeled as participants or subjects of the respective study nor are they transformed into objects. Individuals, who offer insights and cues as to how their work is getting done from their standpoint and coordinated to and within social relations, are referred to as informants. Informants are acknowledged as knowing actors (Smith, 1987). Individuals interacting locally with the informants, such as service providers

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or support workers in the examples described above, or individuals active translocally are also consulted within Institutional Ethnographies and referred to as extraor translocal informants. In interrogating with informants, the Institutional Ethnographer aims to discover the problematic, which occurs when knowledge shifts (Rankin, 2017). The Institutional Ethnographer observes this shift as the embodied knowledge from informants is abstracted into objective or standardized accounts. The problematic is the core of Institutional Ethnography and allows to conduct a coherent analysis. Yet, the problematic is often not obvious at the outset and thus difficult to articulate. People active in the local settings may experience some level of discomfort: individuals voice that their concerns are not taken serious or that what concerns them most is not heard; healthcare professionals feel restricted in the way how they can enact core values of their profession in practice or have to adhere to guidelines that are counterintuitive to their professional reasoning and judgment. The Institutional Ethnographer aims to understand how these experiences come about and discover how they are organized within social relations and are ruled by particular forms of consciousness. Webster et al. (2019) conducted an Institutional Ethnography to examine how the provision of primary care to patients with chronic pain is socially organized from the perspective of the care providers in Ontario, Canada. Taking the standpoint of care providers, Webster et al. (2019) carried out interviews with 19 primary care physicians and eight primary care nurses, as well as observations at four primary care sites. Texts, which were mentioned by informants in describing their work, were included in the analysis. Their analysis revealed that the problematic centers around providing opioid-based treatment and responding to the needs of patients who may experience poverty and addiction. Primary care providers are challenged and frustrated in providing care for patients with chronic pain and often feel helpless in effectively addressing their problems. They encounter concerns and problems of their patients related to poverty and marginalization, which fall outside the medical domain, and require support to obtain, for instance, financial benefits. While historically opioid prescriptions were the standard, this has changed with the Canadian Guideline for Opioids for Chronic Non-Cancer Pain launched by the College of Physicians and Surgeons (CPSO). This guideline created extreme caution in the treatment of chronic pain with opioids particularly among newly trained physicians, who heard about the guideline already in their training. They fear losing the license in case they prescribe inappropriately. The authors of the guideline pointed out that the Ministry of Health and CPSO will “investigate prescription practices that may be harmful to patients” (Webster et al., 2019, p. 10). Most informants voiced that they “are hamstrung by the lack of supports for opioid therapies, the limited alternatives to opioids and apprehensions about the risks that opioids can entail” (Webster et al., 2019, p. 7f). The treatment with opioids becomes further complicated since in the past, patients have been treated with opioid-based treatments, which in turn led to addictions. Subsequently, patients expect being treated with opioid-based treatments making or are in need of opioids, thus putting physicians in a position where they are “sorting out organic from secondary gain” (Webster et al., 2019, p. 6). Sorting this question out is particularly challenging in the absence of any objective (bio-)marker for assessing

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pain. Having to question or invalidate what a patient has said puts also a trustful relationship with the patient at risk. Yet there is “pressure on physicians to police their patients who suffer from chronic pain, ironically to avoid being policed themselves by their professional College” (Webster et al., 2019, p. 12). The problematic discovered in this Institutional Ethnography from the standpoint of care providers reflects a disjuncture of various forms of knowledge. While this disjuncture occurs in the work of the care providers locally, it is shaped by forms of consciousness entering into front-line practice from elsewhere (translocally). The embodied experiences by the care providers reflect the complex situations of most of their patients, who may face poverty, marginalization, addiction, other health conditions, etc., their professional obligations to sustain one’s license, the guidelines suggesting how to best treat patients with chronic pain, etc.

Concluding Remarks As the exemplified Institutional Ethnographies in this chapter illustrate, Institutional Ethnography aims to empirically describe disjunctures lived and felt in people’s everyday practices. This approach allows Institutional Ethnographers to link experiences of actual individuals at the micro-level with macro-level structures (Campbell, 2016). The study examples introduced in this chapter represent the potential of Institutional Ethnography to open up how management and administration (Breimo, 2015), professional or topic specific guidelines (Cupit et al., 2020; Webster et al., 2019) or legal frameworks (Devi et al., 2020) interrogate with health and rehabilitation practice in ways that are not necessarily supportive for service users or providers in achieving the goal of rehabilitation. The Institutional Ethnographers who conducted these studies suspended prior understandings or theories about the problem and focused on understanding what is actually happening within social relations. Such a description of what is happening needs to be transparent and comprehensible, and the Institutional Ethnographer remains authentic and accurate to what actually happens. Institutional Ethnography has the power to mobilize research toward social justice (Teghtsoonian, 2016). Though experiences are lived and felt differently and the work of individuals varies depending on the resources available to them, decisions made by, for and with them carry different consequences. Yet, despite this variability and diversity, their work is shaped and coordinated by the same relations. Institutional Ethnographers examine how everyday life is put together and subsequently display the social relations, in which the doings in daily life are embedded in and which forms of consciousness are ruling them. These understandings open up an understanding how health and social disparities play out in everyday life and are accounted for in health and rehabilitation services and programs. The strength of Institutional Ethnography is that it does not theorize which characteristic of a person or intersection of characteristics will create disadvantages or disparities. Rather Institutional Ethnography shows empirically how the embodied experiences of individuals are distinct

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and require work to live up to what is expected within the ruling relations. In doing so, Institutional Ethnographies also open up an understanding how institutional settings including rehabilitation services or programs may produce disparities. The power of Institutional Ethnography to provide a thorough foundation for enacting change, that is grounded in the actualities of everyday practice, remains to be fully exploited in rehabilitation.

References Breimo, J. P. (2015). Captured by care: An institutional ethnography on the work of being in a process of rehabilitation in Norway. Journal of Sociology & Social Welfare, 42 (13–29). Campbell, M. L. (2016). Intersectionality, policy-oriented research and the social relations of knowing. Gender, Work and Organization, 23(3), 248–260. https://doi.org/10.1111/gwao.12083 Cupit, C., Rankin, J., Armstrong, N., Martin, G.P. (2020). Overruling Uncertainty about Preventative Medications: the Social Organisation of Healthcare Professionals’ Knowledge and Practices. Sociology of Health & Illness, 42 Suppl 1, 114–129. https://doi.org/10.1111/1467-9566.12998. DeVault, M. L. (Ed.). (2008). People at work. Life, power, and social inclusion in the new economy. New York University Press. Devi, N., Prodinger, B., Pennycott, A., Sooben, R., & Bickenbach, J. (2020). Investigating supported decision-making for persons with mild to moderate intellectual disability using institutional ethnography. Journal of Policy and Practice in Intellectual Disabilities, 17(2), 143–156. https:// doi.org/10.1111/jppi.12314 Grahame, P. R., & Grahame, K. M. (2009). Points of departure: Insiders, outsiders, and social relations in caribbean field research. Human Studies, 32(3), 291–312. https://doi.org/10.1007/ s10746-009-9121-5 Malachowski, C. K., Skorobohacz, C., & Stasiulis, E. (2017). Institutional ethnography as a method of inquiry: A scoping review. Qualitative Sociology Review, 13(4), 84–121. McCoy, L. (2021). Materialist matters: A case for revisiting the social ontology of institutional ethnography. In: P. C. Luken & S. Vaughan (Eds.), The Palgrave handbook of institutional ethnography (pp. 35–46). Springer Nature Switzerland AG. Prodinger, B., & Turner, S. M. (2013). Using institutional ethnography to explore how social policies infiltrate into daily life. Journal of Occupational Science, 20(4), 357–369. https://doi.org/10.1080/ 14427591.2013.808728 Rankin, J. (2017). Conducting analysis in institutional ethnography: Analytical work prior to commencing data collection. International Journal of Qualitative Methods, 16(1), 160940691773448. https://doi.org/10.1177/1609406917734484 Smith, D. E. (1987). The everyday world as problematic. University of Toronto Press. Smith, D. E. (1990). Texts, facts and femininity. Exploring the Relations of ruling. Routledge. Smith, D. E. (1999). Writing the social. Critique, theory, and investigations. University of Toronto Press. Smith, D. E. (2005). Institutional ethnography. AltaMira Press. Smith, D. E., & Turner, S. M. (Eds.). (2014). Incorporating texts into institutional ethnographies. University of Toronto Press. Teghtsoonian, K. (2016). Methods, discourse, activism: Comparing institutional ethnography and governmentality. Critical Policy Studies, 10(3), 330–347. https://doi.org/10.1080/19460171. 2015.1050426. Webster, F., Rice, K., Katz, J., Bhattacharyya, O., Dale, C, & Upshur, R. (2019). An Ethnography of chronic pain management in primary care: The social organization of physicians’ work in the midst of the opioid crisis. PloS One, 14(5), e0215148.

Chapter 6

Use of Ethnographic Data to Critically Reflect on Disabled Children’s Participation and Their Encounters with Rehabilitation Services Snæfrídur Thóra Egilson Abstract Research on childhood disability has long been characterized by an emphasis on medical discourse and the burden of a disabled child on family life. Today, a gradual change in the research agenda can be noted, characterized by an interest in developing knowledge about disabled children using social, cultural, and human rights perspectives. Within rehabilitation research, there is also a gradual shift from an impairment-based focus towards more emphasis on disabled children’s participation in their everyday environments. This chapter draws upon participant observations of a pair of siblings. These took place in the siblings’ homes and school and focussed on their possibilities for participation and their interactions with peers and adults. The essence of therapy was also in focus. The ethnographic data provided a base for critically exploring the effects of ideas that are taken for granted within rehabilitation on the lives of disabled children and their families. Keywords Childhood disability · Family-centred services · Critical perspectives · Disability studies · Childhood studies · Rehabilitation · Participation

Introduction In the past, social perspectives on disability and research within rehabilitation have largely operated in different spheres. The pioneers within disability studies were sceptical towards the medical and normative stance of rehabilitation (Barnes et al., 1999, 2002). Instead, they believed that impairments and disability were quite distinct phenomena. In their opinion, disability was, first and foremost, about social arrangements, meaning that people were disabled by barriers within society, not by their differences (Shakespeare, 2013; Shakespeare et al., 2018). Similar criticism towards disability studies has certainly been apparent within rehabilitation research, where disability studies were not acknowledged as “legitimate knowledge”. Apart from a few important exceptions mainly from scholars in the field of childhood disability S. T. Egilson (B) Centre of Disability Studies, School of Social Sciences, University of Iceland, Reykjavik, Iceland e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_6

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and rehabilitation (Gibson, 2014, 2016; Hamdani & Gibson, 2019), there has been little common ground for discussions between the two academic fields. Drawing on perspectives from disability studies and rehabilitation, this chapter focusses on two disabled1 siblings’ possibilities for participation and their interactions with peers and adults. It is part of a larger study about life quality and participation of disabled children and young people (Egilson et al., 2021). As rehabilitation services, particularly physiotherapy and occupational therapy, were important parts of the siblings’ lives, the aims of therapy and the way in which it was provided are also in focus in this chapter.

Theoretical and Conceptual Underpinnings The LIFE-DCY study was framed within critical disability studies (Goodley et al., 2019; Meekosha & Shuttleworth, 2009) and childhood studies (Curran & RunswickCole, 2013; James et al., 1998; Tisdall, 2012). Critical disability studies, like other critical approaches, seek to make social values and assumptions visible, particularly when the aim is to address and understand complex social phenomena, equity, and justice (Eakin et al., 1996; Harvey, 1990). Knowledge is viewed as socially situated, and power and knowledge are linked. To quote Hammell, a critical scholar in occupational therapy: “critical thinking is concerned with questioning assumptions, ideas, and practices that are dominant or taken for granted, to expose the ways in which power is exercised and ideologies are perpetuated” (Hammell, 2015, p. 238). Increasingly, critical disability studies focus on the body, mind, and impairment, including the possibilities for living well with various types of impairments (Goodley et al., 2019). Today, critical disability studies are characterized by lively interdisciplinary debates that have produced a vast body of contemporary knowledge about many issues except, perhaps, about rehabilitation, leaving it to critical scholars within health and rehabilitation. Inspired by critical perspectives, Gibson and colleagues (Gibson, 2016; Gibson et al., 2012; Hamdani & Gibson, 2019) have challenged many of the assumptions in children’s rehabilitation and inspired scholars and practitioners to think differently about childhood disability and the traditional way of delivering rehabilitation services. This chapter is a similar attempt to intersect the tenets of both fields along with those of social studies of childhood to explore some important issues related to disabled childhoods and rehabilitation.

1

The term disabled children/people is used throughout this chapter to signify that disability arises in the interaction between children with impairments and their environments. In line with my theoretical standpoint, disability is seen as a gap or mismatch between the capacity of a child (with impairment) and the demands set by his or her environment. Although children with impairments may be disabled, they do not “have” disabilities.

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Disability Studies and Childhood Studies Until recently, research on childhood disability has been characterized by an emphasis on medical discourse, notions of normality, and the burden a disabled child places on the family (Curran & Runswick-Cole, 2013; Watson, 2012; Ytterhus et al., 2015). Within disability studies, there has long been a limited focus on childhood (Priestley, 2003). Following a critical turn, several publications have focussed explicitly on the lives and experiences of disabled children and their families and allies (Curran & Runswick-Cole, 2013; Runswick-Cole et al., 2018). This development has coincided with, and been inspired by, a growing human rights perspective regarding children and disabled people (United Nations, 2007) and the social studies of childhood (James & Prout, 1997; James et al., 1998). Early theories on childhood emphasized normal child development, which restricted which variations in children’s bodies and abilities were considered normal. Opposed to these naturalistic and biological perspectives, the social studies of childhood developed in the 1980s and 1990s broadened the focus to societal, historical, and cultural dimensions. Children should be seen as social actors in their own right, contributing in various ways to their families and communities (James & Prout, 1997; James et al., 1998). In the last few years, the importance of critical engagement and acknowledgement of the complexity of children’s lives and childhood as a phenomenon have been increasingly highlighted (Spyrou et al., 2019; Thomas, 2019). Wickenden (2019) argues that despite aspirations to talk about all children, social studies of childhood have had an ambivalent attitude towards difference. For example disabled children have not been routinely included in the discourses within the field. In order to position the voices and experiences of disabled children at the centre of inquiry and move beyond the focus of impairment and normative expectations, Curran & Runswick-Cole, 2013, 2014) promoted the concept of disabled children’s childhood studies. These critical scholars claimed that disabled childhoods should be valued in their own right, not in comparison with other groups and social categories (Runswick-Cole et al., 2018). They argued that the use of age-based milestones in child development discourses does not reflect disabled children’s childhoods and may in fact uphold their marginalization. This stance has been criticized as being potentially “othering” by Wickenden (2019, p. 195) who points out that delineating a separate type of childhood may possibly exacerbate the differences between and overlooking the commonalities with other children. Her point is that disabled children generally want to be seen the same as other children, not different (Bekken, 2014; Grue, 2018; Haraldsdóttir, 2013). The critical lenses of disability studies, social studies of childhood, and those evolving within childhood rehabilitation allow for questioning some of the assumptions about disabled childhoods and directing attention to the social, cultural, and structural factors that shape the lives of disabled children (Curran & RunswickCole, 2013; Hamdani & Gibson, 2019; Runswick-Cole et al., 2018). By identi-

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fying and unpacking these factors, it is possible to better understand how these have shaped knowledge that has been assumed to be “true” within childhood rehabilitation (Gibson, 2016).

Aims and Enactment of Childhood Rehabilitation Services In recent years, there has been a paradigm change from a medical and impairment emphasis to a more rights-based and relational way of thinking about disability as set forth in the Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2007). Within childhood rehabilitation, parent-professional partnerships that emphasize children’s participation in a typical family and community activities and routines have been promoted (Dunst et al., 2007; King et al., 2017). Nevertheless, King et al. (2017) point out that family-oriented services may not be as common as one would expect. Earlier research on rehabilitation services for disabled children and their families in Iceland has shown a strong focus on medical and physical dimensions of disability (Egilson, 2011, 2015; Ingólfsdóttir et al., 2021; Stefansdottir & Egilson, 2016). In general, less emphasis seems to be placed on if or how the intervention translates into the daily lives of the child and family or promotes the child’s participation in her or his community. The findings of a focus-group study conducted with rehabilitation professionals showed that services for disabled children and their families were dominated by medical notions and financial and practical considerations (Ingólfsdóttir et al., 2021). Due to restrictive policies, heavy workloads and professional traditions, the therapists who participated in the study had difficulties moving from the prevalent medical view and ways of working to more family-centred and participation-based services. Although a few advocated for services provided in the children’s environments, others could not envision things being different than they presently were. The United Nations Convention on the Rights of the Child (UNCRC), Article 12 (1989), sets forth the child’s right to be heard in matters that affect their lives, and Article 7 in the CRPD (United Nations, 2007) states that disabled children’s perspectives are to be given due weight, on an equal basis, with those of other children. There are nevertheless indications that although disabled children may be increasingly consulted about various aspects of their lives, they may not be heard or their concerns may not be acted upon (Einarsdóttir & Egilson, 2016), such as within rehabilitation. (Andersen & Dolva, 2014; Bekken, 2014, 2017).

Study Aims and Methodology This chapter draws on data from a larger study titled Life quality and Participation of Disabled Children and Youth (LIFE-DCY) that aimed to develop understanding

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and knowledge about disabled children’s and young people’s life quality and participation (Egilson et al., 2021). This is a mixed methods study based on a sequential design. First, two surveys, the KIDSCREEN-27 (KIDSCREEN Group Europe, 2006) and Participation and Environment Measure (Coster et al., 2011, 2012), were used to gather information about how disabled and non-disabled children and their parents evaluated different aspects of the children’s quality of life and participation. Then, case studies were conducted with disabled children and focus groups with young disabled people in order to seek out the diversity, complexity, and richness of disabled children’s lives. While foregrounding the perspectives of disabled children, information from their parents, teachers, and therapists was also obtained to develop further insight into the social contexts in which the children’s experiences were formed. This included decisions regarding participation made by different stakeholders and structures and processes that appeared to influence the children’s participation. This particular case centred on twins (Andri and Embla) who were aged 8–9 when the study took place. Both had a neurodevelopmental condition affecting all limbs and needed full support in most situations. The children were observed in their usual environments of home and school. Observations in therapy and community settings were also planned but were not possible due to COVID-19. The main focus of the observations was on the children’s possibilities for participation and their interactions with peers and adults. To complement the information gained from observations, interviews were conducted with the children and their parents, teachers, and therapists. First, I interviewed the parents to get necessary background information. Then, I met with the children on several occasions. During and after observations, I asked the children directly about their experiences through questions such as “why do you do it that way?”, “what do you think of…?”, and “how did you feel when…?” In addition, the questions in the KIDSCREEN-27 were used to initiate conversations with the children about their well-being, autonomy, relations, peers, and experiences of participation in different settings. Further interviews with the parents and teachers were then conducted along with a focus group interview with the children’s therapists. The notes from the observations and transcribed interviews were re-read iteratively to determine their accuracy. Then, the data were grouped and organized to identify patterns. The initial analysis was inductive and data-oriented (Alvesson & Skjöldberg, 2018). Then, critical lenses were used to shed light on how meaning was made of participation in relation to the contexts in which the children found themselves and the focus of their rehabilitation. Critical analytical questions guided the analysis. Examples of these questions are what are the characteristics of the children’s environments, how do these characteristics intersect to enable or constrain the children’s participation, and how do participants understand and talk about participation? A common goal in the analysis was to uncover processes by examining everyday practices and asking why they persist (Egilson et al., 2021).

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Ethical Considerations Research with disabled children poses various ethical and methodological questions (Einarsdóttir & Egilson, 2016; Gibson et al., 2013). The theoretical lenses described above were helpful in addressing issues that arose during the course of the study, such as acknowledging children’s perspectives as relational (Facca et al., 2020; Warming, 2005). Before and during the study, thorough preparations took place, taking into consideration the children’ ages, abilities, and preferences, such as by giving enough time and simplifying language. Attention was paid to power relationships, and an emphasis was placed on the children’s and their parents’ involvement in making decisions about their participation, when and where observations should take place and whom to interview. Trust and security in all interactions with the researcher were emphasized. The children and their parents, teachers, and therapists received an information letter and a consent letter. The children’s letter used simplified language. Some identifiable information was removed to prevent the results being traceable. Nevertheless, the family was made aware of the fact that the small population of Iceland and the uniqueness of their situation made it difficult to ensure full anonymity, to which they agreed. The study was approved by the Icelandic Bioethics Committee (VSN-16-187-V2).

Findings The twins, Andri and Embla, and their parents lived in a in a medium-size community in Iceland. They attended school and after-school services from early morning until the afternoon. Once a week, they met with their therapists at a paediatric rehabilitation centre, and once a week, the physical therapists came to school. Everyone involved seemed content with this arrangement. Therapy focussed on promoting function, mainly through the use of assistive devices for positioning and support, mobility, and transportation. Promoting accessibility at home and in school was also a priority. In addition, exercises to promote balance and stamina and to counteract contractures and deformities were emphasized. The twins had a number of assistive devices at home and in school which allowed them to travel independently, sit, stand, and use their hands to manipulate objects. Icelandic health insurance provides assistive devices at no or limited cost, but extensive documentation is typically required, and well-grounded applications are often denied if they are not in line with regulations. Due to such restrictions, the twins only had one set of indoor power wheelchairs which they used in school. At home, they could only move around with great difficulty when placed in their walkers. Since age four, the twins had power wheelchairs for outdoors that they also used when travelling to and from school in the family van and on the school playground. For educational assignments, they mostly used computers and iPads.

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Participation at Home and in the Community The house was relatively spacious and had been thoroughly redesigned in order to meet the children’s needs for access and transitions. Due to his work, the father was often away; thus, the family received support from the municipality in the afternoon and until the early evening to help the children with their homework and other practical tasks. The extended family also provided a lot of support. During my visits, the children were happy but tired when they came home from school. After an afternoon snack, approximately an hour was spent on homework. Then, the children played cards with their mother or the assistant before dinner preparations took place. Apart from school, most of the children’s social life took place in their house, especially during the harsh Icelandic winters. The children’s friends came over to play on the weekends. Due to accessibility concerns and other practical matters, the children seldom went to other children’s houses; it was just too complicated. As Embla said, “it is better to be here because of the [power] wheelchairs and all that”. Physical accessibility in the community where they lived was not ideal, and when the observations took place in the middle of the winter, it was especially difficult to manoeuvre around outdoors due to slippery surfaces and the lack of snow removal. The family nevertheless actively sought out experiences with their children, such as going to the library and cinema when possible. The mother claimed that “you can do the same as every other [family] … it only takes more planning and time, and a bit more stuff [devices]”. Parents and therapists emphasized that getting power wheelchairs a few years earlier had positively affected the children’s possibilities for participation because the wheelchairs enabled them to freely and independently seek out experiences in their neighbourhood and on the school playground. Getting a van one year later also provided the family with more opportunities to transfer devices between places and travel together. When the study took place—and after many arguments with the national health insurance of Iceland—the family had just got a dock in the back of the van which locked the power wheelchairs in place. The father described how it could previously take 10–15 min to position and fasten the two wheelchairs in the van. “Fastening some eight belts down and then fasten the children”. Because of the time it took, the parents often took turns in going to the store, not taking the twins with them. The father explained how “you are five minutes away, and it is such a hassle having to spending all these extra minutes [for fastening the wheelchairs]. But the other day, they [the children] were able come with me to pick up a pizza for the first time in their lives, and they just loved it!” Both parents emphasized the positive difference this device had made for the whole family. The example also reflects the various requirements that have to be met in order to ensure that disabled children have the same opportunities for participation as other children do.

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Participation in School The school the children attended was regarded as the most accessible school in town and had a reputation of having positive attitudes and flexible organization and teaching. During my visits in school, the atmosphere appeared to be welcoming and relaxed. A team of teachers, social pedagogues, and teaching assistants worked together towards shared goals. During my informal and formal discussions with school staff, they expressed being proud of the services they provided, and one could sense that things were running relatively smoothly. As an example of the flexibility in the school, I was told that a teaching assistant went to the children’s house every day between 9 and 4 when they were recovering from major surgery. However, it had taken the parents much effort to get these services approved by school authorities. Although various modifications had been made in order to promote physical accessibility during the years the children had been in school, there were still obstacles. The fact that the school was on two floors made travels more time-consuming. Also, the ground floor was on split-levels, and there were no railings to distinguish the height differences, which could be dangerous when a crowd of children gathered in the area. An accident the year prior to my visits was at the forefront of all my informants’ mind. Andri had fallen in his wheelchair into a drop about one metre below the ground floor and had got a concussion. Luckily, he ran into a closet which had just been placed there; otherwise, he might have suffered more severe injuries. Andri claimed that the drop was the only thing he really wanted to change in school. “It was very stressful [when I fell into the drop] and annoying. I was bruised all over”. Although complaints had been made along with firm requests to add railings, no improvements had been made since the accident. The family and therapists had advocated for the use of assistive devices within the school. Therapists had instructed school personnel on how to use the devices and shared guidelines, information and examples of physical accessibility. During my visits, various assistive devices were efficiently used to provide the children with necessary support and enable them to take part in school activities. In some cases, the use of a device seemed to have unwanted consequences and negatively affect the children’s well-being and concentration. The following observation was made one morning at school. The students sit scattered around the classroom. They work silently and independently, calculating math problems and colouring designated areas on a paper. Embla is placed in her standing frame, much higher than the rest of class. Elísa [Embla’s classmate and friend] sits upon the table by Embla’s side and at her height. Embla and Elísa take turns calculating and colouring, and both seem content with this set-up. Then, Embla starts to complain about a tingling sensation in her legs. The teacher comes and rubs her legs. Gradually, Embla becomes more uncomfortable and seems to lose her concentration while also complaining more loudly about the standing frame. Eventually, the teaching assistant releases Embla and places her in her chair. Elísa follows silently, sits down by her side, and continues doing the math. Embla’s attention, however, seems to have faded away, and she stares into the air.

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In other cases, ways of using assistive devices could be classified as stigmatizing. The following observation took place early one morning. When I arrive in class, the siblings sit next to their classmates, each with their assistant by their side. Without a word, Andri’s assistant takes him out of his chair, quickly places him stomach down upon her lap, puts him in a body splint and then in his chair again.

Although the episode did not seem to draw the other children’s attention, I could not help but wonder whether Andri should be treated this way, which potentially could be classified as objectification, around his classmates. Numerous examples were observed where fellow students spontaneously and instinctively adapted their behaviour so that the twins could manoeuvre in their wheelchairs, pushed objects towards them if needed or placed a colour or pencil in their hands. Examples of close friendships, acceptance, and belonging were also observed. Whenever the children had a choice with whom to work or play, Embla and Elísa paired up, and apparently, Elísa was quite sensitive to her friend’s needs. During one lunch hour, they were sitting at separate tables and then I overheard Elísa say: “There is no friend at Embla’s table”. After Elísa finished her meal, she walked over to Embla’s table, and the two of them sat and chatted together while Embla finished her lunch.

Prioritizing When Time is Limited In the everyday busyness of life, balancing practical aspects with the children’s individual needs appeared to be challenging. For example there were typically joint meetings between parents and professionals about both children. From a familycentred perspective, it is indeed important to address the needs of the family as a whole (King et al., 2017). Simultaneously, each child’s needs must be respected. As one therapist said, Of course, it is practical for the parents to have joint meetings [in school], but maybe we were talking about Embla and, all of a sudden we started talking about Andri. Because they are twins, they have support from each other and all that, but it can also be contradictory … Because they are very different characters and have different needs. There are in fact different factors that are challenging and difficult for them.

These differences in the children’s personalities, interests, and impairment effects were notable during observations. The support they received at school appeared to be individualized in line with each child’s needs. The children stated they were pleased the support they were provided with, and Atli said: “Sometimes I ask [the teacher or the assistant], ‘can you help me, when I have a problem with learning’. And then they show me”. Participation in educational assignments was the centre of attention in school, which appeared to be in line with the wishes of the twins’ parents. Practical aspects, such as placing the children in different devices, taking them to the washroom, and dressing up for outdoors, were time-consuming, leaving less time for social activities

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during breaks. The two days I observed in school the outdoor breaks were cancelled because of the weather. The teaching assistants and occupational therapists told me, however, that it could take up to 20 min to dress the children and get them outdoors during winter. The following observation took place on my second day in school. Due to a heavy storm, the outdoor break is cancelled again. Instead, the students go into relaxation in one corner. They sit quietly on the floor, many in a yoga position and close their eyes while the teacher tells a story. The siblings sit relaxed in their wheelchairs at each side of the group. The relaxation goes on for a while until the teacher says that the children can move down to the lower floor for free time and play. First, the twins need to go to the washroom. There is one accessible washroom for the whole school, placed on the level below. First, Andri goes to the washroom followed by his assistant, and 10 minutes later, Embla’s assistant follows her to the washroom. The whole process takes about 15 minutes for each child. Meanwhile, their classmates are doing activities of their own choice downstairs.

The therapists also worried that not enough emphasis was placed on the siblings’ physical needs. One physical therapist said that: I believe their physical needs could be taken better care of in school. I worry about them sitting so much and that there is hardly any time to get out of the wheelchair and into the standing frame – or just a little rest for these children who are developing maybe scoliosis and contractures in the knees. It is just so important to take care of the physical needs, too. That they will not be too long just sitting, sitting, sitting.

The occupational therapist elaborated about the complexities of fitting everything in and said: “And you have to be very careful. Of course, all these physical factors need to be taken care of, but you also have to pay close attention to the social and psychosocial factors. I find it quite hard”.

Preparing for the Future by Focussing on Accessibility and Autonomy All parties involved considered physical accessibility to be key to the children’s independence and possibilities for participation. Throughout the years, the parents tried to influence local authorities in order to promote services affecting accessibility for their children. Parents and therapists alike emphasized the importance of working with community planners and architects in order to promote their children’s mobility and independence. Nevertheless, in the therapists’ opinion, working at a rehabilitation centre limited their opportunities to work at the administrative level. Also, due to funding regulations and heavy workloads, there was limited time and possibility for inter-professional collaboration and work across organizational boundaries. All claimed that complicated and time-consuming applications for assistive devices took up valuable time and energy that they perhaps would have liked to use differently, such as by planning ahead better and focussing more on the children’s possibilities for participation. The therapists emphasized their contentment about working so closely together with the family, the schools, and with each other and considered this to be the key

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to much of the progress that had been made. The therapist who had the least work experience said: “This is a different way of working, this kind of collaboration … It just feels really good to have gotten to know each other and this type of working”. Another therapist said: “I feel privileged to have worked with this family”. All three stressed the importance of interpersonal aspects and how much they had learned from working with the children and their parents. The children’s teacher also claimed that it was essential for different professions to work closely together in cases like this because it benefitted everybody involved. It has been pointed out that, in order to promote disabled children’s autonomy as an important part of preparing for their future, they must be provided with real choices and consulted about and actively involved in aspects of their lives. Accordingly, rehabilitation professionals need to pay attention to whether and how disabled children’s experiences are included in decision-making (Andersen & Dolva, 2014; Bekken, 2014, 2017). The two children in this study seemed to accept therapy services as they were out of hand. “It is just fine” was their answer when I asked about specific aspects of therapy. The physical therapists conveyed that, as the children got older, they had more say about therapy. However, this appeared to relate first and foremost to the order of exercises during therapy sessions, not to the essence of the interventions. Similarly, during observations within school, there were not many choices to be made. Rather, choices were limited in line with the ongoing agenda. Although the parents focussed mainly on everyday tasks, they also stressed factors that needed looking into as their children aged. This included ensuring that they get more space of their own. They also wanted their children to have more control over the support they received, such as when, where, and by whom it was provided. The mother stated: “When you become teenager, you may not want to have your mother around … Today, I join them at every gathering and party”. The occupational therapist elaborated on the future when she said: “They have been raised this way … that they are individuals who have voices and are entitled to participation … So, you have faith in that they will grow and be able to take part in a lot of things. But that requires really good access”. Although physical accessibility is indeed important, various hindrances to participation may be caused primarily by societal and individual attitudes, as has been emphasized the recent years (Anaby et al., 2013; Egilson & Traustadottir, 2009; Kramer et al., 2012; World Health Organization, 2001). These were, however, hardly addressed by therapists.

Concluding Discussion The aim of this chapter is to depict two disabled siblings’ possibilities for participation and their engagement and interactions with peers and adults. Attention was also directed at the focus of the rehabilitation services the children and family received. Parents, school personnel, and therapists agreed on the importance of promoting the children’s independence and participation. In line with the wishes of the family, an effort had been made so that that therapy interventions would translate well into

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the lives of the children and their family. In particular, measures had been taken to promote physical accessibility at home and within the school to create ways in which the children could actively participate along with their classmates and friends. A variety of assistive devices allowed the children to travel independently and work on tasks and assignments. Nevertheless, balancing between the children’s physical needs, such as their needs for positioning and support and their educational and social participation within school, clearly caused a dilemma. There was simply not enough time to do everything that needed to be done. Not surprisingly, each profession prioritized what was within its expertise. The teachers emphasized participation in educational assignments, while the therapists worried that not enough time and effort were placed on the children’s physical needs, which they occasionally discussed as a precursor and prerequisite to participation. Parents and professionals alike appeared to be influenced by accepted normative standards about independence and age-based milestones, which at times counteracted the children’s social participation with their peers, especially during leisure time. Gibson (2016) urged rehabilitation professionals to consider the effects of their work. Part of this critical reflection is to question the premises behind good outcomes. In pursuing these outcomes, what effects are produced and what other possibilities are rendered impossible? Evidently, independence has been the driving principle of rehabilitation for a long time. Reflecting this emphasis, a fact sheet from the World Health Organization (2020) states that “[r]ehabilitation helps a child … to be as independent [emphasis added by author] as possible in everyday activities and enables participation in education, work, recreation, and meaningful life roles”. The findings of this study echo this understanding as my informants generally considered independence and participation as one and the same. In the literature, though, other dimensions of participation, such as being accepted within a situation, having choice and control, being motivated, and contributing to and supporting others have repeatedly been underlined (e.g. Egilson & Traustadottir, 2009; Hammell, 2014; Imms et al., 2016). Similarly, various environmental dimensions that affect disabled children’s participation have been identified within the rehabilitation literature (e.g. Batorowicz et al., 2016; Kramer et al., 2012; Maxwell et al., 2012). Apart from physical accessibility, environmental hindrances were hardly addressed by the therapists in this study. Despite the acknowledgement of the complexities of childhood participation, physical independence continues to be the cornerstone of childhood rehabilitation. What effects does this emphasis produce (Gibson, 2016)? Does it limit other possibilities for supporting children with extensive impairments, such as the twins in this study, to thrive now and in future? For children with extensive impairments, it is indeed important to plan for future challenges and identify factors that enable them to use their potential to the fullest. Although the children were content with their lives and the services they received, it is known that adolescents and adults are often critical when reflecting on their experience of growing up with disability (Egilson, 2014; Smith & Traustadóttir, 2015). Many of the young disabled people in the larger LIFE-DCY study described

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disempowering experiences in their former encounters with rehabilitation and other professionals, leaving them with feelings of being inadequate and flawed (Egilson et al., 2021; Jóhannsdóttir et al., 2021). Another deeply held assumption within rehabilitation has been the notion of normality (Cooper, 2013). In some cases, strong measures have been taken to strive for more normal appearance, overlooking other dimensions of the lives of disabled children. Freyja Haraldsdóttir (2013), a disability activist, doctoral student, and fellow researcher in the LIFE-DCY project, described the anguish she went through as a young child due to rehabilitation professionals’ effort to make her look “more normal”. Freyja has osteogenesis imperfecta, and the experiences she describes took place around 1990. The shape of my wheelchair seat was supposed to force my legs into positions that would make them straight (and normal), even though it resulted in me not being able to use my wheelchair when I had a broken bone or was tired in my body, which was often. I even went through surgery where all the bones in my arms and legs were broken up, so it was possible to straighten them. I was in hospital for many weeks because of the pain (morphine did not even do the trick); it took me half a year to learn to do things I could do before my hands were made straight and a year to become just as bent as before the surgery because of all the new fractures.

In her chapter, Freyja goes on to describe how she was so afraid to go to physiotherapy that she could not sleep at night and woke up with nightmares. She lied about being sick, threw tantrums, and even stopped speaking at times. Consequently, she was diagnosed with selective mutism (Haraldsdóttir, 2013). Although Freyja had numerous strengths that have served her well in her adult life, these were not appreciated. This example demonstrates the powerlessness and vulnerability of a disabled child in her encounters within rehabilitation professionals in the recent past. It is also a reminder of how interventions that may previously have been accepted as best practices are later considered to be inconceivable and even inhuman. Still, the normative focus and emphasis on independence prevail within rehabilitation and society. Disabled children are affected by the way they are treated in school, rehabilitation, and society. Even though their bodies may be different, they generally want people and professionals to accept that they feel “normal” (Bekken, 2014; Haraldsdóttir, 2013; Wickenden, 2019). It is important to widen understanding and acceptance of difference and diversity, such as by recognizing and legitimatizing a greater diversity of types of children, childhoods, and ways of participating. Like Hamdani and Gibson (2019), I suggest that a variety of options for living a good life as a disabled child and becoming adult should be supported in rehabilitation encounters with children and their families. I believe critical disability studies have much to offer in questioning how childhood disability is understood and addressed. Ongoing dialogue about accepted rehabilitation practices from a critical lens may promote questions about if and how things could be done otherwise. Ethnographic methods are well suited to seek out the diversity, complexity, and richness of disabled children’s lives. They also provide an important base for critically exploring the effects of entrenched ideas within rehabilitation on the lives of disabled children and their families using therapy services. In order to scrutinize accepted

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practices and promote necessary changes, it is imperative to draw on the experiences of disabled children, key persons in their lives, and disabled people reflecting on their childhood experiences.

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Maxwell, G., Alves, I., & Granlund, M. (2012). Participation and environmental aspects in education and the ICF and the ICF-CY: Findings from a systematic literature review. Developmental Neurorehabilitation, 15, 63–78. Meekosha, H., & Shuttleworth, R. (2009). What’s so ‘critical’ about critical disability studies? Australian Journal of Human Rights, 15, 47–75. Priestley, M. (2003). Disability: A life course approach. Blackwell Publishing Ltd. Runswick-Cole, K., Curran, T., & Liddiard, K. (Eds.). (2018). The Palgrave handbook of disabled children’s childhood studies. Palgrave Macmillan. Shakespeare, T. (2013). Disability rights and wrongs revisited. Routledge. Shakespeare, T., Cooper, H., Dikmen, B., & Poland, F. (2018). Rehabilitation as a disability equality issue: A conceptual shift for disability studies. Social Inclusion, 6, 62–72. Smith, E., & Traustadóttir, R. (2015). Childhood disability, identity and the body. In R. Traustadóttir, B. Ytterhus, S. T. Egilson, & B. Berg (Eds.), Childhood and disability in the Nordic countries: Being, becoming, belonging. Palgrave MacMillan. Spyrou, S., Rosen, R., & Cook, D. T. (Eds.). (2019). Reimagining childhood studies. Bloomsbury. Stefansdottir, S., & Egilson, S. T. (2016). Diverging perspectives on children’s rehabilitation services: A mixed-methods study. Scandinavian Journal of Occupational Therapy, 23, 374–382. Thomas, N. (2019). What is the point of studying childhood as a social phenomenon? Children & Society, 33, 324–332. Tisdall, E. K. M. (2012). The challenge and challenging of childhood studies? Learning from disability studies and research with disabled children. Children & Society, 26, 173–267. United Nations. (2007). The UN convention on the rights of persons with disabilities. United Nations. Warming, H. (2005). Participant observation: A way to learn about children’s perspectives. In A. Clark, A. T. Kjørholt, & P. Moss (Eds.), Beyond listening: Children’s perspectives on early childhood services. Policy Press. Watson, N. (2012). Theorising the lives of disabled children: How can disability theory help? Children and Society, 26, 192–202. Wickenden, M. (2019). Reimagining disabled children within childhood studies: The challenge of difference. In S. Spyrou, R. Rosen, & D. T. Cook (Eds.), Reimaginang childhood studies. Bloomsbury. World Health Organization. (2001). International Classification of Functioning, Disability and Health. World Health Organization. World Health Organization. (2020). Fact sheet/rehabilitation. https://www.who.int/news-room/factsheets/detail/rehabilitation World Health Organization. Ytterhus, B., Egilson, S. T., Traustadóttir, R., & Berg, B. (2015). Perspectives on childhood and disability. In R. Traustadóttir, B. Ytterhus, S. T. Egilson, & B. Berg (Eds.), Childhood and disability in the Nordic countries. Palgrave Macmillan.

Chapter 7

Incorporating a Reflexive Ethnographic Sensitivity in Child Protection Work James G. Rice and Hanna Björg Sigurjónsdóttir

Abstract This contribution highlights the methodological, intellectual and ethical need to integrate the principles of critical reflexive ethnography into child protection work. Drawing upon the insights from numerous research projects in Iceland, the authors contend that an ethnographic eye and a position of reflexivity are sorely needed correctives to counter-balance the ableist assumptions about disability and parenting that colour how child protection investigations pertaining to disabled and marginalised parents are conducted. Magasi (Top Stroke Rehabil 15:283–287, 2008) has called to “infuse” the rehabilitation sciences with the critical perspectives of disability studies in order to inform and improve practice. We make a parallel call to infuse child protection investigations with ethnographic sensitivity. We contend that the principles of ethnographic reflexivity can be used to shed light upon the role that sociocultural biases and prejudice towards disabled people play in custody deprivation cases, as well as to help to produce better outcomes for families. Keywords Ethnography · Reflexivity · Disability · Child protection · Iceland

Introduction This contribution highlights the methodological, intellectual and ethical need to integrate the principles of critical reflexive ethnography into child protection work. Drawing upon the insights from a number of research projects in Iceland, the authors contend that an ethnographic eye, a critical position of reflexivity and attention to the context in which the details of everyday life occur are sorely needed correctives to counter-balance the uncritical and often ableist assumptions about disability and parenting common to child protection work in Iceland. Magasi (2008) has called to “infuse” the rehabilitation sciences with the critical perspectives of disability studies in order to inform and improve practice. We make a parallel call to include a critical ethnographic eye to infuse the processes of understanding how the evidence of child J. G. Rice (B) · H. B. Sigurjónsdóttir University of Iceland, Reykjavík, Iceland e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_7

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neglect is collected and interpreted, as well as how the principles of ethnographic reflexivity can be used to shed light upon the role that sociocultural biases and prejudice towards disabled people play in custody deprivation cases. We will first discuss the context of disability, parenting and child protection, followed by a brief discussion as to what we mean by reflexivity in an ethnographic perspective, and what is meant by reflexivity in social work and child protection. This will be followed with a discussion about the importance of applying an ethnographic perspective upon the details that comprise the narratives of custody deprivation cases, as well as applying this to an appreciation of the context in which the evidence of neglect is situated. We end with some examples drawn from our collective body of work and experience in Iceland to illustrate our argument. Both contributors have been engaged in research in the area of disabled parents and their dealings with the child protection in Iceland for a number of years. Our collaborative perspective is based upon that of anthropology (first author) and disability studies (second author). This collaboration has taken the form of a body of research projects and graduate student projects since 2014, but the second author has worked in this field since the late 1990s and completed a doctorate on the subject (Sigurjónsdóttir, 2005). Our collective findings generally mirror those of our colleagues in Iceland and the Nordic areas, as well as those from further abroad who work with us within the Parenting SIRG (Special Interest Research Group) of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD). One key position of our group is that parents with intellectual disabilities (ID) can indeed provide adequate parenting with the proper supports in place (e.g. Feldman et al., 1999; Tarleton & Turney, 2020). But another is that parents with ID come into contact with child protection (CP) systems at a disproportionate rate than other parents, and that outcomes tend to favour custody deprivation as an outcome (e.g. Booth et al., 2005; Llewellyn et al., 2003). A number of our colleagues also focus on custody deprivation case study data from an empirical perspective which considers important issues of rates and outcomes found within the data (e.g. Powell et al., 2020). However, we have tended to pursue a more ethnographically informed, microapproach focused on the narratives produced by child protection and their lawyers within the case texts, which are in turn informed by the concerns of disability studies and anthropology. For example, we have examined how the evidence of neglect is produced through a consideration of sociocultural stigmas and prejudice about ID as well as the history of eugenics (Sigurjónsdóttir & Rice, 2017). Another study, grounded in the perspectives of the anthropology of bureaucracy, considers the ways in which notifications of neglect are used in the construction of case narratives beyond their original purpose (Rice & Sigurjónsdóttir, 2018). Some of our work has strayed into material culture, such as examining how food and food culture is used to form evidence of substandard parenting (Rice et al., 2019).

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Ethnographic Sensibility What makes our work ethnographic is two-fold. First is that while a large portion of the data sources for our work over the last five or six years have been textual (court documents, parenting assessments, child protection reports, etc.), this work is always informed by interviews, discussions and informal chats with stakeholders, brief sessions of participant observation where possible, knowledge derived from the parenting groups the second author has held with parents for many years and gossip— the lifeblood of ethnographic work in which parents, family members, academics and professionals connected to these issues share stories and happenings. The second is the ethnographic sensibility we bring to our data. What this means is not easy to articulate. McGranahan (2018) has already done an admirable job of attempting such a definition: An ethnographic sensibility is what makes ethnography matter. It is attention to the conditions and experiences of life as actually lived. It is an attunement to worlds shared via participantobservation that extend beyond the parameters of a narrowly defined research question. It is an understanding that the narrow view can only be understood via the wide angled one, and vice versa. An ethnographic sensibility requires depth and time; it is a theoretical commitment as well as a methodological practice. In that people’s lives are a combination of the predictable and the uncertain, so too does ethnography, as a way of knowing about people’s lives, tell us things that are also both predictable and not (McGranahan, 2018, p. 7).

But aside from methods, as McGranahan suggests, it is also about theory and a way of seeing and understanding. The attention to the details contained within the case records, exploring the context in which said details occurred and were interpreted, and seeking further information about them from parents, family members and sympathetic professionals, pushes our research beyond the discourse analysis of texts. This ethnographic sensibility prompts us to look at the details not as “facts” but statements which encodes much about who inscribed them. When criticisms are made in child protection (CP) reports about family household practices, our first reaction is to ask not only what the claim means and the context in which it occurred, but who made it, and why and what purpose does its inclusion serve. An important component of an ethnographic sensibility, in our view, is reflexivity.

Ethnographic Reflexivity The incorporation of the concept of reflexivity into ethnographic theory and methodology in anthropology began since at least the 1960s and 1970s. However, as Davies (2008) points out, this is in reference to the positive inclusion of reflexivity as a fundamental component of ethnographic research knowledge. Prior to that time, reflexivity was perceived as problem to overcome, especially for those who adhered to positivism (Davies, 2008, p. 11). Davies continues that reflexivity “at its most immediately obvious level refers to the ways in which the products of research are affected by the personnel and process of doing research” (Davies, 2008, p. 4).

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Kleinsasser (2000) highlights two key factors in regard to this: one being that reflexivity involves a “process of critical self-reflection on one’s biases, theoretical predispositions, preferences,” and the second an explicit “acknowledgement of the inquirer’s place in the setting, context, and social phenomenon he or she seeks to understand” (Kleinsasser, 2000, p. 155). Salzman (2002) adds the reflexivity needs to be included in an ongoing way within the entirety of the research process, from project design to data collection and analysis: “Reflexivity is thus the constant awareness, assessment, and reassessment by the researcher of the researcher’s own contribution/influence/shaping of intersubjective research and the consequent research findings” (Salzman, 2002, p. 806). Salzman also contends that reflexivity is not an individual enterprise and should be a collective process in order “to replace solitary research with collaborative, team research, in which the perspectives and insights of each researcher can be challenged and tested by the others” (ibid., p. 812). In consideration of reflexivity within child protection and within the discipline of social work which is often responsible for training the social workers who work for CP agencies, it is important to distinguish between academic social work and practice. It is also important to consider the difference between those seeking assistance from social services and those who have been subjected to an unwanted child protection investigation and the relationships between workers and parents that will be forged as a result. Ferguson (2003) notes that some clients of social workers can be understood as “involuntary clients” (Ferguson, 2003, p. 211), which we hold is an apt term that very well describes the position of many parents undergoing a child protection investigation. Scourfield and Welsh (2002) contend that the “relationship between worker and client in child protection social work is inherently problematic, and the difficulties in the relationship form the context of the construction of clients in the office culture” (Scourfield & Welsh, 2002, p. 18). They further add: “There is an atmosphere of coercion surrounding the child protection role” (ibid., p. 19) as child protection workers are required to place a primary emphasis upon the protection of children. “It is a clear and open organisational ethic that helping parents for its own sake is not part of the job, and in child protection cases children’s interests are quite often thought to clash with those of parents” (ibid., p. 26). To be fair to child protection workers, operating under this mandate and possibly dealing with heavy caseloads and an overall difficult job, it is not unreasonable to suggest that the concerns about reflexivity pertaining to knowledge production may be difficult to sustain within such an environment. There is also a significant difference between the relationship between researcher and research participant (and sometimes collaborator) in disability studies and anthropology with that of the worker– client relationship in social work and child protection. In turn, this has implications for the differences in the forms of knowledge that are produced in the encounters. But these differences cannot be forgotten, and the power imbalances between worker and client need to play a key role when assessing the data that is produced in child protection investigations. Academic social work as a discipline has been concerned about reflexivity almost as long as disciplines such as anthropology. D’Cruz et al. (2007) have provided an overview of social work’s engagement with the concept of reflexivity since the

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1990s. They present a cogent review of reflexivity in the production of knowledge, but one tailored to the particularities of social work. They open to declare that there is a great deal of scholarly blurring of the concept, but identify three key ways in which reflexivity is used in social work. They contend that the “first variation regards reflexivity as an individual’s considered response to an immediate context and making choices for further direction” (ibid., p. 75). The second is “an individual’s self-critical approach that questions how knowledge is generated and, further, how relations of power operate in this process,” with the third “the part that emotion plays in social work practice” (ibid.). Their first version of reflexivity as a part of the individual decision-making practice is rather removed from anthropological understandings of the concept, partly for the reason that the discipline is more concerned with patterned, group behaviour than that of individuals. The second variation roughly approximates a more anthropological understanding, which they further define as “as a way of articulating, and therefore acknowledging and scrutinizing, the tacit knowledge of the researcher” (D’Cruz, Gillingham & Melendez, p. 78). The third is specific to the social work discipline and assumes a worker–client relationship that is not at all how anthropologists conceive of their interlocutors or research participants. It is certainly laudable that social work has engaged with the concept of reflexivity, and some of their engagement with the concept, at least in the academic context, reflects similar discussions within the social sciences in general. However, in our body of research, ‘reflexive’ is not a term we would use about the material that comprises a great deal of the court case data that we examined in Iceland. Originally we pondered if this was a case of critical academic social work training not making a transition to practice. This may indeed be a factor, but even an examination of how reflexivity is used within social work in the literature is suggestive that it is not comparable to the ethnographic version of reflexivity in many ways. One example is D’Cruz et al.’s (2007) contention that one version of reflexivity concerns “individual decision making processes.” Neither of us are social workers nor psychologists so we will abstain from taking a position on this beyond noting that there is arguably a certain “neo-liberal” association behind some of these claims that arguably concerns the governance of the clients of social work. Ferguson (2003) contends that some of the motivations behind the inclusion of reflexivity in social work relate to the desire to construct the clients of social services as “active” rather than “passive,” in which a “key emphasis in the new paradigms [is] on exploring the internal and external resources which poor people bring to the stresses in their lives and their interactions with welfare services” (Ferguson, 2003, p. 199). Whether or not this is desirable for those who manage social services, or their clients, it appears rather similar to the ideas of the neo-liberal, self-regulating citizen, a “therapeutic ethos” which imbues what is in fact a set of governing principles based upon market freedom and individual responsibility inherited from the Reagan and Thatcher eras (Foster, 2016). This also speaks to a significant difference between ethnographic research and social work, as ethnographers would never entertain the idea of managing or governing the behaviours of their research participants in the way social workers

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may be expected to of their clients as a key part of their work. D’Cruz et al. (2007) highlight the structural differences which may preclude social workers, academic or practicing, from pushing the concept of reflexivity in the ways advanced by ethnographers. Ethnographers reside in a world of uncertainties, ambiguities and complexities; this speaks not only to the complexity of the world-as-lived that ethnographers encounter but also the philosophical critiques of ethnography and ethnographic knowledge-making that burst onto the scene during the post-modernist turn (see e.g. Clifford & Marcus, 1986). Social workers in practice, by virtue of their role and organisational structure, cannot inhabit the same world as ethnographers it would seem. D’Cruz et al. continue: “Any approach to social work practice that introduces uncertainty is likely to be in stark contrast to the certainty that bureaucratic organisations strive for through the employment of procedural strategies to manage risk in the lives of clients” (D’Cruz et al., 2007, 81). We recognise that uncertainty, particularly some of the more whimsical (or extreme) versions of post-modern pontification, may be ill-suited to the everyday operations of social service organisations. However, we contend that some measure of uncertainty and the ethnographic flavours of reflexivity and developing an ethnographic eye are nevertheless crucially important to develop within the sphere of child protection, particularly as it applies to investigations of marginalised parents.

Ethnographic Details The final theme that we will raise is that of the details of everyday life found within the case data pertaining to child protection investigations. Often times these documents are rich in detail: these documents, such as parenting assessments and notes made by child protection workers, include observations about parent and child interactions, the home, household practices, demeanour and mannerism, and sometimes rather intimate details about individual bodies, manners of dress and hygiene and so forth about the parents under investigation. The report and case files are often not lacking in details; but what they often lack is a critically reflexive consideration of the details and the context in which they occur—in other words, an ethnographic eye or sensibility. The criticism of the details included within reports we tend to raise, in our experience, is easily brushed off in terms of “well, we are just trying to provide an overall picture of the parent.” A legal scholar we consulted admitted that some of the strange details and minutiae documented within the case records were indeed odd, but they are really not that significant from a legal perspective; after all, no parent is going to lose custody of their child because of a cat on the bed or shabby (Is. druslulegar) living room curtains, to refer to a few interesting “details” we have come across. We agree that these details in and of themselves do not constitute evidence of neglectful parenting, nor does child protection explicitly use them this way. But this is particularly poignant in the case of parents with disabilities. What may be written off as individual quirks of parents or families in other contexts of child protection investigations are instead infused with a measure of gravitas here. In other words, differences,

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oddities or quirks on the part of disabled parents are seen as symptomatic of the disability and of substandard parenting in ways that do not apply in other contexts. We have been struck with how such details seem absent in cases concerning parents with substance abuse issues, for example. The case narrative essentially is about whether the parent can complete a rehabilitation programme or not, and the documentation of that process and outcomes. In the case of disability, and in the absence of clear evidence of abuse or neglect, the narrative switches to a “preponderance of evidence” approach in which these kinds of details, in isolation often quite trivial, in sum become the evidence required. In the context of disability, ID in particular, the often unspoken belief that drives the case forward is the view that these people should not be parents in the first place, as opposed to a “normal” parent struggling with a potentially “correctable” issue. We have argued elsewhere that these descriptions and stigmatic representations do play a role in evidence production in terms of painting an overall negative picture of the parent in the minds of the courts (Sigurjónsdóttir & Rice, 2016). When we see such details make their way from specific reports into the case summaries prepared by child protection for courts, we reason that their inclusion must be purposeful and potentially have an effect. Yet when we raise arguments critical of the content of these reports, reactions tend to be that of puzzlement or annoyance. If anything, such reactions encouraged us that we must be on to something. The anthropologist Herzfeld (2015) has offered an explanation as to why authority figures react negatively when scholars call out these kinds of practices. He contends that the ethnographic focus on details is the hallmark of the discipline. But that focus “irritates the sensitivities of the powerful” and that anthropologists “touch raw nerves when they expose the inconsistencies between what they know to be locally experienced realities and official regimes of truth” (Herzfeld, 2015, p. 19). In conference settings, friendly and less so, we have detected some curious interest from audience members, but also a sense of puzzlement as to what the point is of paying attention to the seemingly trivial details contained within the reports written about parents by child protection workers, surveillance staff and psychologists. The significant “hard evidence” to support custody deprivation comes in the form of IQ tests, or reports from doctors about patterns of bone fractures or notifications from teachers about poor hygiene or risk behaviours, and that is where we should place our attention. Attention to the seemingly unimportant details on our part is easily dismissed as irrelevant and a waste of time. Herzfeld contends that this is indeed a typical response towards the details that generally comprise ethnographic knowledge. This focus on details from the point of view of our critics engenders “rhetorical displays of methodological positivism that include accusations of anecdotalism and unscientific thinking” (Herzfeld, 2015, p. 19). But we contend that the seemingly mundane details play a much more significant role in custody deprivation cases concerning parents with ID. In such a context, the details matter quite a lot. Lacking direct and substantiated evidence of abuse or neglect, the case becomes predicated upon the “risk” the parent poses, often in the form of the risk to the child’s immediate security or future development. The anthropologist Douglas (1990) noted that the concept of risk in Europe before the

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modern era was rather neutral; it was predicated upon probability and in practice was an accounting of losses and gains in a business context. Douglas contends that the modern meaning of the term risk has changed. Co-opted by political discourse from its original location within mathematics and business, the term is now equated with danger: “now risk refers only to negative outcomes.” She continues: “danger would once have been the right word, but plain danger does not have the aura of science or afford the pretension of a possible precise calculation” (Douglas, 1990, pp. 2–4). Douglas also stresses the current forensic function of risk and the role it plays in assigning blame: “culture needs a common forensic vocabulary with which to hold persons accountable…risk is a word that admirably serves the forensic needs of the new global culture” (ibid., p. 1).

The Lack of Ethnographic Sensitivity in Practice The data upon which our analyses are based, and the particular examples drawn, encompass a range of research projects, graduate student projects, discussions with professionals and practical experience covering a combined twenty-year period.1 The methodology of these projects varied to include semi-structured interviews with parents, their extended family and professionals, sessions of participant observation where possible, and a heavy emphasis upon discourse analysis in the case of documents, such as court files, parenting assessment and numerous child protection records. The possible examples that could be provided as evidence of the lack of ethnographic sensitivity would be too numerous for this limited space. Instead, we have offered a number of common themes that have emerged from the data, citing specific exemplars in the process. In terms of the rich, ethnographic details that are present in the data, we have long pondered the inclusion of details that struck us as odd or which seemed to lack some needed context to fully comprehend. One graduate student project in Iceland (More, 2015) was conducted by a former surveillance worker for child protection, and we have since confirmed her observations with others with similar experiences. These surveillance workers are not trained in ethnographic field methods, nor do they generally possess the skillset required in specialised contexts such as parenting with a disability. A common response to our queries about this is that they are instructed to merely document what they observe within the home, but without any particular guidance about how to do this and what to focus on. However, this criticism also extends to professionals about whom we expect better, such as psychologists conducting 1

These projects included the doctoral project of Sigurjónsdóttir (2005), funding provided by University of Iceland Research Fund and ethical approval by Icelandic Data Protection. Authority (Persónuvernd) (no. 2000/796); Family life and disability (2014–2016), funding provided by University of Iceland Research Fund and ethical approval by the Icelandic national bioethical committee (no. 14–062); Disability, immigration and multigeneration: intersecting factors in child protection cases (2020–2022), funding provided by University of Iceland Research Fund and ethical approval by the Ethics Committee of the University of Iceland (7.4.2020).

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parenting capacity assessments or trained social workers. We have reasoned that the numerous odd and sometimes bizarre, observations that we routinely encounter in the data are partly the result of untrained observers recording what they feel to be significant or notable about the parents, their homes and their behaviours. But this does not explain similar observations being made by trained and experienced professionals. Frequent comments about the body such as weight or teeth or clothing are understandable in a context in which concerns about children’s diets or hygiene may be an issue. Similar comments about parents are often made as well and which, in our view, are done to suggest the parents lack proper regimes of care of the self, and which extends to deficient parenting towards their children. Yet in one case that we have collected a lot of data about, by way of example, the comments about the father’s poor teeth need to be placed into context. He had a very problematic childhood and became a child of the system until he was an adult. As such, the quality of his teeth could more accurately be read as an indictment of the system that was supposed to provide care for him as a child and later teenager, rather than an implication of his own personal failings and possible parental incompetence as an adult. A brief comment about a teenager’s “torn pants” may imply a parenting issue, but it also may imply nothing more than teenage fashion. These details, bereft of context, can turn misinterpretations into damnable evidence. Observations made by untrained surveillance staff are often problematic, but we were particularly troubled encountering such details recorded by professionals who should know better in our view. The observation by a psychologist paid by the court to conduct a parenting custody assessment that the mother “was not wearing makeup, poorly dressed, and wearing sports clothing” (Is. “stefnda hafi verið ómáluð og lítt til höfð og klæðst íþróttafötum”) most likely speaks more to the psychologist’s views of gender norms, and possibly class-based biases, than it does to parenting ability. Similarly, a complaint about a parent not putting up Christmas decorations at an appropriate time is rendered irrelevant when it is later learned that the parent was simply reproducing the norms of the home in which she was raised. The idea that homes may have varied traditions that could conflict with the cultural expectations of the observer does not seem to be taken into consideration, but it is something that any first-year anthropology student would understand. Some observations are problematic due to a lack of training and reflection upon individual biases, but some simply defy any rationale for their inclusion, at least any we can see. In an assessment conducted by a psychologist in the home, numerous observations were recorded, and many of them were quite puzzling. One example was made of a child’s dresser drawer filled with “junk” that a child had been rummaging through “without purpose.” In our collective experience, children’s dresser drawers are the intended repository for bric-a-brac that children insist to collect and the idea of needing a purpose to root through it on the part of a child beyond odd. Another comment was about things in the kitchen that should not be there, but without specifying what these things were and which leaves the reader’s imagination to fill in the blanks. In another case, the complaint about a mother’s living room curtains by a psychologist was not solved by visiting her home and observing these curtains ourselves. Nor in this case did we see any evidence of the complaint about

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the mother having ‘too many pots and pans.’ We found nothing remarkable about the home at all. In such instances, where the case for custody deprivation seemed to be built upon the disability status of the parent more than actual evidence of abuse or neglect, the evidence is comprised of a preponderance of “evidence” drawn from these kinds of details to serve as indicators of parental incompetence. However, when these details are closely examined, the problems of relevance, bias and lack of context begin to emerge. To be fair to the staff of child protection and their workers, they are operating under rather different conditions from ethnographers. The staff enter a situation in which they may believe that the health and safety of children are at risk, and oftentimes this belief is warranted. But this also brings with it the very real risk of confirmation bias. A psychiatric nurse we spoke with, who has many years of experience supporting parents and children with autism, raised this issue as a problem with how child protection operates in the context of disability. In reference to a recent case, we were familiar with, from the outset she stated that the healthcare professionals and child protection workers “expected failure,” and from this understanding flowed their observations and judgements. In the case of healthcare and educational workers in particular, some of the details included about parents, and their children are, in our view, entered into evidence in a form of bad faith. A common observation about the hygiene or healthcare of children that appears in the case data are mentions of head lice and pinworms. We do not dispute the factual basis of these observations, but their lack of context. Pinworms, and in particular head lice, are very common in the Icelandic school system, especially in pre-school and early grammar school years. The first author, at the time of writing, has been receiving regular emails sent to parents to notify about head lice and to remind us to check our children. Doctors, nurses and teachers in Iceland know this. Our point is not that these details are included in the case data; our point is that their inclusion needs to be contextualised, especially for lawyers and judges, and that their inclusion cannot necessarily be read as an indicator of substandard parenting. Without such a caution, there is a very real risk that their observations will be read as such and our hypothesis is that they are sometimes intended to be read as such. An important factor linked to the lack of attention to context and bias of these details in the case data is that of basic reflexivity, or the lack thereof. It is our contention that the lack of basic reflexivity speaks to the biased predispositions towards parenting with a disability by the system, as well as a lack of training, or at times both. But the most egregious examples are those in which the observers fail to indicate any awareness that their presence may play a role in the data collection process itself. The strongest examples of this are instances in which the behaviours of parents or their children have been induced by the presence of observers, yet the behaviours are presented as evidence of parenting conduct as if they would have occurred in their absence as well. Child protection surveillance in the home, or in a specialised parent training setting, is a highly artificial environment cross-cut with power relations that cannot be treated as a naturalistic setting, but is often presented or implied as such in the case data. We do not suggest in any way that child protection should not investigate

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notifications of abuse or neglect, or monitor the conditions of the home. We do suggest that these investigations should be tempered by the kind of ethnographic sensitivity we have been arguing for. When an investigation is formally opened, and child protection workers are actively collecting data about the home, due diligence needs to be paid to the quality of this data, the positionality of those who produce it and the conditions under which it was acquired. This is the normal stuff of ethnographic methodology. In this context, it includes considering the interpersonal dynamics between staff, support workers and parents. Throughout our data numerous comments are made by parents about staff they like, and staff they do not, for various reasons. It is not surprising to us to surmise that this needs to be taken into consideration, especially when two staff workers present two radically different takes on a parent within a short-time span. In a recent case concerning a mother with autism, two workers presented diametrically opposed pictures of a mother and her ability to take advice and cooperate. According to those with first-hand knowledge of the case, the positive and negative representations were directly linked to the mother’s relationship with the specific worker. What was particularly frustrating for the mother’s supporters was that the psychologist who did the assessment for child protection emphasised the negative version of events in their reports. Practices that most clearly exemplify a lack of appreciation of ethnographic knowledge are the instances in which the negative examples are directly produced by the observer. The strongest example of this is a case in which a surveillance worker’s visit coincided with dinnertime in the home. The parents, aware that their child understandably refused to eat with a stranger present, opted to solve this problem by feeding the child before or after the worker’s visit. To our surprise, this worker made complaints that the parents were either not feeding their child properly or else feeding the child too soon, or too late. Despite the fact that the parents stated clearly their reasons for this, the implication of improper feeding schedules remained in the case data.

Conclusion It is in such a context that Christmas decorations put up too early or too late (or not at all) become the details recorded about the home that, in sum, produce some form of preponderance of evidence of risk to support a case of custody deprivation in the context of parents with disabilities, particularly intellectual disabilities. Alone and in isolation such observations would not mean much. “Christmas decorations” and the state thereof in our experience is not the kind of thing that would generate a notification to child protection. But once child protection is on the scene, and their surveillance staff put into operation, these sorts of details are recorded into the daily reports which make their way into the compiled explanatory statement (Is. greinagerð) that becomes the face of the case for custody deprivation that is presented to the courts. These seemingly trivial details can matter.

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Particularly troubling for us is that we have learned from former surveillance workers that they receive little or no training in terms of how to observe and how to decide what is of significance that come to be inscribed in reports. Some appear to record what strikes them, as individuals, as problematic or unusual, without much of a consideration for context as well as reflexivity in regard to the effects their presence has on the scene and the influence of their own encultured values and norms upon deciding what is noteworthy. It is here where an ethnographic eye for detail and sensitivity about reflexivity is well-suited to dig into the context and to produce a critical counter-narrative to dispute, or clarify, the implications of the recorded details in custody deprivation cases. It also strikes us how much child protection staff, surveillance workers and members of the legal profession could benefit from a course in ethnographic research methods in order to properly assess and contextualise the kinds of information that are lodged in reports about the parents and their homes. The ability to contextualise the details, and to understand the role played by the observer’s own positionality, would not only produce better reports, and it would open further pathways to assist parents and the family in order to bring about better outcomes and avoid harsher measures like custody deprivation unless absolutely necessary.

References Booth, T., Booth, W., & McConnell, D. (2005). The prevalence and outcomes of care proceedings involving parents with learning difficulties in the family courts. Journal of Applied Research in Intellectual Disabilities, 18(1), 7–17. Clifford, J., & Marcus, G. E. (Eds.). (1986). Writing culture: The poetics and politics of ethnography. University of California Press. Davies, C. A. (2008). Reflexive ethnography: A guide to researching selves and others (2nd ed.). Routledge. D’Cruz, H., Gillingham, P., & Melendez, S. (2007). Reflexivity, its meanings and relevance for social work: A critical review of the literature. The British Journal of Social Work, 37(1), 73–90. Douglas, M. (1990). Risk as a forensic resource. Daedalus, 119(4), 1–16. Feldman, M. A., Ducharme, J. M., & Case, L. (1999). Using self-instructional pictorial manuals to teach child-care skills to mothers with intellectual disabilities. Behavior Modification, 23(3), 480–497. Ferguson, H. (2003). Welfare, social exclusion and reflexivity: The case of child and woman protection. Journal of Social Policy, 32(2), 199–216. Foster, R. (2016). The therapeutic spirit of neoliberalism. Political Theory, 44(1), 82–105. Herzfeld, M. (2015). Anthropology and the inchoate intimacies of power. American Ethnologist, 42(1), 18–32. Kleinsasser, A. M. (2000). Researchers, reflexivity, and good data: Writing to unlearn. Theory into Practice, 39(3), 155–162. Llewellyn, G., McConnell, D., & Ferronato, L. (2003). Prevalence and outcomes for parents with disabilities and their children in an Australian court sample. Child Abuse & Neglect, 27(3), 235–251. Magasi, S. (2008). Infusing disability studies into the rehabilitation sciences. Topics in Stroke Rehabilitation, 15(3), 283–287.

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McGranahan, C. (2018). Ethnography beyond method: The importance of an ethnographic sensibility. Sites: A Journal of Social Anthropology and Cultural Studies, 15(1), 1–10. More, R. (2015). Underestimated families: Parenting assessment and parents with intellectual disabilities (MA. Thesis). University of Iceland, Reykjavík. Powell, R. L., Parish, S., Mitra, M., Waterstone, M.E., & Fournier, S. (2020). Terminating the parental rights of mothers with Disabilities: An empirical legal analysis. Missouri Law Review, 85, 1–38. Rice, J., & Sigurjónsdóttir, H. B. (2018). Notifying neglect: Child protection as an application of bureaucratic power against marginalized parents. Human Organization, 77(2), 112–121. Rice, J. G., More, R., & Sigurjónsdóttir, H. B. (2019). ‘Serving neglect: Foodways in child protection cases. Food and Foodways, 27(4), 253–272. Salzman, P. C. (2002). On reflexivity. American Anthropologist, 104(3), 805–811. Scourfield, J., & Welsh, I. (2002). New times or same old story? Risk, reflexivity and social control in child protection. Working Paper Series: Paper 23. Cardiff: University of Cardiff. Sigurjónsdóttir, H.B. (2005). Family support services and parents with learning difficulties (Ph.D. Thesis). University of Sheffield: Sheffield, UK. Sigurjónsdóttir, H. B., & Rice, J. G. (2016). Stigmatic representation of intellectual disability and termination of parental custody rights. In K. Scior & S. Werner (Eds.), Intellectual disability and stigma: Stepping out from the margins (pp. 77–90). Palgrave Macmillan. Sigurjónsdóttir, H. B., & Rice, J. G. (2017). ‘Framed’: Terminating the parenting rights of parents with intellectual disability in Iceland. Journal of Applied Research in Intellectual Disabilities, 30(3), 543–552. Tarleton, B., & Turney, D. (2020). Understanding ‘successful practice/s’ with parents with learning difficulties when there are concerns about child neglect: The contribution of social practice theory. Child Indicators Research, 13(2), 387–409.

Chapter 8

Bringing an Ethnographic Sensibility to Children’s Rehabilitation: Contributions and Potential Kinga Pozniak and Gillian King

Abstract In this chapter, we examine the applications and contributions of ethnographic approaches in children’s rehabilitation. Central to our argument is the idea that ethnography is a sensibility, meaning, a particular mindset that both informs, and flows from, ethnographic methods of data collection. We begin by presenting our definition of ethnographic sensibility and show how this sensibility is deployed in existing literature in children’s rehabilitation. We consider its potential and limitations as well as how it could be cultivated in children’s rehabilitation and the health sciences more broadly. Keywords Children’s rehabilitation · Disability · Ethnography · Anthropology · Ethnographic sensibility · Participant observation · Children · Parents · Service providers

Introduction At its heart, ethnography seeks to understand how people see their world and make sense of their experiences. This renders it a potentially powerful tool for researchers in children’s rehabilitation, which we define broadly as any work concerned with the function, participation, and quality of life of children and youth with a variety of diagnoses and disabilities as well as their families. In this chapter, we examine the applications, contributions, and potential of ethnographic approaches in children’s K. Pozniak Postdoctoral Researcher, CanChild Centre for Childhood Disability Research and Department of Pediatrics, McMaster University, Hamilton, Canada e-mail: [email protected] G. King (B) Distinguished Senior Scientist, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada e-mail: [email protected] K. Pozniak · G. King Professor of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Canada © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_8

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rehabilitation. Central to our argument is the idea that ethnography is a particular way of both thinking about, and of doing, research. Rather than being simply a method of collecting data, we view it as a sensibility: meaning, a particular mindset that both informs, and flows from, the use of ethnographic methods of data collection. In a true ethnographic manner, we set the stage for the discussion that will follow by reflecting on how our approach to ethnography in this chapter is informed by our own positions and disciplinary pedigrees. Kinga Pozniak is a sociocultural anthropologist trained in ethnography who recently found her way to health research when her son was diagnosed with cerebral palsy. Philosophically she draws inspiration from the conversations between anthropological studies of disability and critical disability studies, and the burgeoning subfield of disability anthropology that sits at the intersection between them (Ginsburg & Rapp, 2020; Hartblay, 2020). Gillian King has a background in social psychology and brings to children’s rehabilitation a lifespan perspective incorporating systems thinking and a positive developmental perspective (Halfon et al., 2014; Lerner & Castellino, 2002; Sameroff, 2009). In her work, she has used ethnography alongside other research methods. In what follows we begin by outlining the tenets of ethnography that inform our thinking. We then provide examples of how the two components of ethnographic sensibility—the mindset and the methods—have been deployed in children’s rehabilitation (sometimes together, at other times separately), and consider both their limitations and the possibilities they offer. We then offer some suggestions for how an ethnographic sensibility could be cultivated in the health sciences. For the purpose of this chapter, our understanding of ethnography is informed largely by the anthropological tradition. However, we do acknowledge that other disciplines have their own ethnographic traditions, and that many of the perspectives presented here overlap with (and often draw on) other disciplines such as sociology, psychology, critical disability studies, and rehabilitation sciences (e.g., occupational science). While it is beyond to scope of this chapter to acknowledge all these overlaps, we hope that readers hailing from other disciplinary and philosophical traditions will find synergies with their own work and interests.

An Ethnographic Sensibility Traditionally associated with anthropology (though not exclusive to it), ethnography can best be understood as a methodology rather than simply a method of collecting data. Central to this methodology is a particular sensibility (McGranahan, 2014, 2018), or way of thinking about research. This includes the issues we are interested in, the questions we pose, and the ways in which we go about exploring these questions. This sensibility both infuses, and flows from, the use of ethnographic methods of data collection. An ethnographic sensibility leads the researcher to seek to understand and describe what people do, what they say about what they are doing, what it means to them, and what it says about larger social, cultural, political and economic patterns, processes and phenomena (Savage, 2000). Anthropologists strive to find

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connections between people’s individual actions and larger societal phenomena. Although anthropologists do not confine themselves to any particular philosophical and epistemological tradition, many anthropologists working on issues related to children’s rehabilitation are attentive to issues of agency and power (Closser & Finley, 2016; Lambert & McKevitt, 2002) and are driven by a commitment to social justice (Morrison et al., 2016). This sensibility infuses the “doing” of research, meaning the particular methods through which data is collected and interpreted. The classic method associated with ethnographic research is participant observation: in a nutshell, being present in the everyday lives of people whom one is researching, and, as much as possible and appropriate, doing whatever it is that they are doing (Bernard, 2018; Mannik & McGarry, 2017). Although participant observation is not a requirement for doing ethnography, it is the traditional mechanism through which ethnographers immerse themselves as deeply as possible in their chosen “field,” or research site. The “field” can be any space, or number of spaces (whether geographic or virtual) where the researcher can study the people and phenomena of interest to them: a neighborhood, a medical clinic, a therapy session, or a virtual support group. Rather than merely observe, anthropologists take part as much as possible and appropriate in the lives of people whom they are studying. However, it should be noted here that “participation” and “observation” are two ends of a continuum: the degree to which a researcher will be able to participate in the activities of people whom they are studying will vary from situation to situation and from person to person. In-depth understanding of people’s lives and meanings is achieved through prolonged immersion and cultivating relationships with one’s interlocutors (meaning, the people with whom the researcher is engaging). Participant observation is often used in conjunction with other methods, such as interviews, direct observation (without participating) or textual analysis of sources such as archives or medical records. Ethnographers capture their evolving observations by keeping copious field notes, which may be supplemented by charts, maps, drawings, or more recently, visual imagery such as photographs or videos. The traditional output of ethnographic research is a book-length monograph which is confusingly also referred to as an ethnography (Savage, 2000). Because interpersonal relations form the “base of knowledge” produced through ethnographic encounters, cultivating and maintaining relationships constitute the “real work” of ethnography (Lawlor & Mattingly, 2001). The knowledge produced through the interactions between a researcher and their interlocutors is considered intersubjective, or co-produced. For this reason, ethnographers need to be reflective about their own identities and social locations, and how these shape the entire research process, including their chosen topic, the questions posed, the relationships with their interlocutors, what they observe (and what they do not), and ultimately the type of knowledge that gets produced (Marcus & Fischer, 1986; McGranahan, 2014). A flagship feature of ethnographic writing is “thick description” (Geertz, 1973) of the phenomena being studied. People usually appear in the text as named individuals, rather than categories of people (e.g., mother), their actions or reflections are described in the context in which they occurred and situated in the wider social, cultural, political, economic, and historical context (Closser & Finley, 2016), and the

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ethnographic data is grounded in relevant theory and history (McGranahan, 2014). Although generalizability of findings is not the goal of ethnography, ethnographers strive to find and create synergies between data and theory in order to produce analytic generalizations—that is, generalizations that go beyond one particular case and relate to broader theories, questions or debates, for example, the culture of health care or gender roles (Schwandt, 2015). Incidentally, this ability to produce theoretical generalizations is also why ethnographic works do not lose their relevance as quickly as other research in the health sciences. In sum, ethnography is about both the process and the product of research, with a mutually constitutive relationship between the mindset and methods of data collection. For example, the commitment to developing a deep understanding of people and their lives invites the use of participant observation, which in turn tends to engender long-term commitments and relationship-building. The richness, depth, and nuance that emerge from such research are best conveyed through techniques such as thick description, and the ensuing publications in turn tend to inspire the particular questions and approaches that we associate with ethnographic mindset.

Ethnographies in/of Children’s Rehabilitation In this section, we consider the way that ethnography has been deployed in children’s rehabilitation. We begin by showcasing a few examples of what we consider to be “classic” ethnographic research projects in order to illustrate the types of questions that ethnographers ask, the approaches they use to explore these questions, and the type of knowledge that this generates. A classic example of an ethnographic text in children’s rehabilitation is Geil Landsman’s book Reconstructing Motherhood and Disability in the Age of Perfect Babies (2009) in which she explored how mothers make sense of their children’s disability diagnosis. Inspired by Landsman’s own experience of raising a child with cerebral palsy, the book is based on two years’ worth of participant observation at a medical center, during which she sat in on families’ medical appointments, attended journal clubs, hung out in the staff room, attended case meetings, and interviewed 60 mothers. The book describes mothers’ quests to make sense of their children’s diagnosis, situating their meaning-making in the context of larger cultural understandings about “normality,” “perfection,” and “personhood” in the contemporary USA. A slightly different ethnographic endeavor is Richard Grinker’s Unstrange Minds (2007), an exploration of the different conceptualizations of autism across both time and space. Drawing on examples from his long-term ethnographic fieldwork in the USA, South Africa, India, and South Korea, Grinker explored how the diagnosis of autism has evolved over time and how it is being understood and deployed in different countries around the world. The book weaves together historical sources, interviews, and his own auto-ethnographic reflections of raising a daughter with a diagnosis of Autism Spectrum Disorder (ASD). Auto-ethnography, a subgenre of ethnography, involves the use of the researcher’s personal experiences as research data.

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By linking personal stories with relevant theory and literature, the author abstracts experiences that go beyond the individual and shed light on wider social, cultural, political meanings, and processes (Bochner & Ellis, 2016). Our third example is of a large-scale ethnographic project with African-American families who had children with disabilities/complex medical conditions, carried out by a team led by Cheryl Mattingly (an anthropologist) and Mary Lawlor (an occupational therapist). Over a period of 13 years, Mattingly and Lawlor’s team followed approximately 40 families, as well as clinicians with whom these families interacted. They interviewed parents, children, and clinicians, videotaped clinical encounters, and organized a collective narrative group with 6–8 families who regularly met over the years to talk about their child’s condition, their experiences during healthcare encounters, and the events that took place in their families’ lives. Mattingly and Lawlor explored how these families go about their lives, how they navigate the healthcare system, and how they assign meaning to their experiences. Their findings were reported in numerous articles and two book-length ethnographies written by Mattingly (2010, 2014), in which she utilized an approach she termed “narrative phenomenology” to situate these families’ experiences in the context of larger societal ideals about disability and illness, hope, and ideas about the future, and within the larger structural context of race, class, gender in the contemporary USA.

Limitations to Ethnography The ethnographic projects described above exemplify, in different ways, many of the tenets of ethnographic sensibility elucidated earlier: prolonged immersion in one’s “field” of study, depth, long-term relationship with one’s interlocutors, integration of different sources, reflexivity, synergies between data and theory, and attention to the relationship between the individual and society and the particular and the general (Bernard, 2018; Mannik & McGarry, 2017). However, ethnographies of this sort are not frequently encountered in the corpus of children’s rehabilitation science literature, a fact we attribute to the lack of ethnographic tradition in the health sciences. Although it is beyond the scope of this chapter to delve into the roots of this issue, we consider a few of the most obvious practical hurdles to the use of ethnography in children’s rehabilitation. Many of the cherished tenets of ethnography noted above are antithetical to existing norms of conducting and reporting health research (Morrison et al., 2016). Funding models do not privilege long-term research projects that pose open-ended questions. Ethics review boards may be suspicious of studies based on participant observation, especially with vulnerable populations such as children. Furthermore, participant observation is time- and energy-intensive; for this reason, researchers often prefer interviews and focus groups. This affects how much rapport a researcher can build with participants and can alter the depth of the data being collected.

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Research is often carried out by teams, with interviews conducted by Research Assistants rather than the Principal Investigator, a fact which complicates relationshipbuilding and researcher reflexivity. The publication currency is journal articles, as opposed to ethnographic monographs, and the latter does not fit the values underlying metrics of h-indices. Articles in the health sciences tend to be shorter, with quotations often removed from context, which runs counter to the ethnographic convention of rich context and thick description. (However, we acknowledge that some journals, such as Qualitative Health Research, Disability and Rehabilitation, or the Canadian Journal of Public Health, now allow longer word counts.) Taken together, these considerations mean that even if a research study was informed by an ethnographic mindset, this mindset does not necessarily come across in the ensuing publication. Notwithstanding the limitations outlined above, we contend that it is possible to productively incorporate an ethnographic mindset in children’s rehabilitation research and literature, and that doing so can produce more thoughtful, and sometimes more relevant, research. In the following section, we outline the contributions that an ethnographic sensibility (meaning, mindset, and/or methods) can bring to children’s rehabilitation and provide examples of how this can be done.

Possibilities of Ethnographic Sensibility The studies cited below employ an ethnographic mindset and/or methods in various ways: A few of the researchers cited are anthropologists, and many others are rehabilitation scholars using ethnographic methods either on their own or in conjunction with other research methods. As we combed through these articles, we reflected on what contributions we can attribute to the use of an ethnographic mindset and/or methods and have come up with the following list.

Ethnography Captures People’s Voices in Multiple Ways Participant observation, often in conjunction with other research methods, can make a particular contribution when working with people for whom the format of the interview or focus group does not work, such as young children (e.g., Cocks, 2008; Davis et al., 2007; Spitzer, 2003). It has been documented that young children often use less language than adults, use it differently, and rely more on nonverbal communication (Spitzer, 2003). For researchers working with young children, participant observation offers a “nonlinguistic alternative” (Spitzer, 2003, p. 67) to explore children’s views and helps avoid an “adultcentric” (Spitzer, 2003, p. 71) interpretation of their actions. Ethnographic methods can also prove fruitful when working with older youth for whom verbal communication is difficult (e.g., Gibson et al., 2014, 2017;

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Teachman & Gibson, 2018; Teachman et al., 2018). For example, Gibson, Teachman, and colleagues used direct observation alongside a variety of other methods (photoelicitation, interviews, mapping, standardized questionnaires, and physiological measures) to study the experiences of disabled youth (some of whom used assistive communication devices) while participating in various life activities and to explore their participation goals (Gibson et al., 2014, 2017; Teachman & Gibson, 2018; Teachman et al., 2018). They observed that, for some of these youth, participating in an interview can be quite tiring. Youth who use assistive speech devices typically keep their responses brief. Some youth prefer to communicate with the help of a conversational partner, usually a parent or caregiver. The study illustrated that the use of observational and non-observational methods together can enable the youth to express themselves in a number of different ways and give researchers different ways of accessing participants’ experiences.

Ethnography Can Allow Participants More Agency and Control Over the Research Process Participant observation engenders a different dynamic between the researchers and their interlocutors than other qualitative research methods such as interviewing. It forces the researcher to enter the life of the interlocutors on their terms, a fact that has been noted by numerous researchers working with young children. For example, Spitzer (2003) conducted 6 months of participant observation consisting of ~20 visits with five preschool-age children to explore how they understood the activities in which they engaged. She contended that this approach allowed children more agency since they were able to indicate their interest in particular activities and to respond to her in ways in which they might not have been able to verbally, thus assuming more control over the research process. In a similar vein, Cocks (2008) consciously opted for participant over non-participant observation in a children’s program, arguing that the children in the program were accustomed to being observed by a multitude of “experts” and that she wanted to avoid reproducing the hierarchy that was inherent in such encounters. In Davis’ research at a school for disabled children (a term he used in keeping with his critical disability studies lens), he found that children exercised agency to direct his attention to what they believed was important; one girl, for example, led him by the hand to a group of nonverbal children, which he understood as a message that he was inadvertently interacting too much with verbal children and not paying sufficient attention to nonverbal ones (Davis et al., 2007). For each of these research studies, the use of participant observation offered a way for the children to exercise more control over the research process than they would have had in less participatory-based studies.

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Ethnography Can Reveal How People Participate in Life Activities For rehabilitation researchers interested in how people participate in life activities outside of the clinic setting, ethnography offers a way to explore that question and capture details that may seem unremarkable to participants and thus not be shared in interviews (Gibson et al., 2014). For example, Gibson et al. (2014) documented a shopping trip with a participant during which the participant had trouble entering the store with a wheelchair, but subsequently enjoyed a pleasant chat with a salesperson. This observation allowed the researchers to recognize that participation in any given activity is a “process of trade-offs,” with the participant balancing the activity’s worth against the time and effort entailed in participating. In Spitzer’s (2003) study of children’s occupations, carrying out long-term participant observation allowed her to experience the children’s activities in ways she would not have been able to by using other methods. For example, she was able to document how a child’s interactions with the family cat changed over the span of a few months, a piece of information that enabled her to see change over time. Furthermore, by physically positioning her body to mimic her participants’ bodies as much as possible, she also learned to recognize and appreciate the sensory stimuli to which her participants were responding, such as a bird singing outside the window or specks of dust dancing in the sunlight.

Ethnography Can Provide Novel Insights About Clinical Interactions Ethnographic methods are particularly fit for examining the interactions that happen in clinics and pediatric therapy programs and how things actually operate “on the ground.” This knowledge, in turn, can inform recommendations for improving healthcare processes such as service delivery. One example of such work is Solomon and her team’s three-year ethnographic study with families of African-American children diagnosed with ASD (Solomon et al., 2015; Solomon et al., 2016). The study was based on participant observation in participants’ homes, clinical visits, and in the community, combined with interviews with families and service providers and video recordings of clinical/therapy visits. The findings from the families’ clinical visits contributed insights about the “interactional, relational, and spatial” (2015, p. 549) work performed by families and clinicians in the course of a healthcare visits. Solomon et al. observed that tacit expectations in healthcare encounters are based on studies of typically developing, usually white and middle-class child patients, and that children with ASD may not be recognized by clinicians to be full agents due to their limited ability to fulfill these expectations. They recommended that doctors recognize children’s sociality and treat them as relational participants (e.g., by addressing them directly) and, more broadly, that healthcare environments need to be adapted to

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maximize the inclusion of ASD children in their own medical encounters (Solomon et al., 2015; Solomon et al., 2016). Another noteworthy example is King et al.’s (2019) study of the ways in which pediatric patients, parents, and therapists (mostly occupational, physical, and speechlanguage therapists) engaged with each other and with therapy activities in the course of the youth’s therapy sessions. The study was based on direct observation and followup interviews with these youth, parents, and their therapists. The authors concluded that engagement, defined as being “enthusiastic, on board, and participating” (2019, p. 1) among all three parties, is the core element of a successful therapy exchange, simultaneously influencing, and being influenced by, factors such as expectations, affect, relationship, collaboration, and progress. They outlined numerous implications for rehabilitation practitioners. They recommended, for instance, that youth and caregivers be explicitly asked about how they view their role in therapy, and that service providers can enhance engagement and motivation by creating enjoyable and meaningful interactions, developing relationships with youth and caregivers, negotiating consensus on goals and plans, and demonstrating therapy progress (King et al., 2019).

Ethnography Can Tell Us How Interventions Work Paying attention to how—not just if —an intervention or an approach to treatment works sheds light on the “messiness” entailed in real-life service delivery and increases the chance that an intervention will be successful (Willis et al., 2018). For example, Fein (2015) carried out ethnographic research at a therapy camp for teenagers with a diagnosis of ASD based around live-action roleplaying games. Fein wore “multiple hats” as a counselor trained in clinical psychology, an anthropologist, and a player, a “winged fairy guardian of traveling adventurers” (2015, p. 303). In her work, she reflected on the characteristics that made the camp a successful “healing system” in a way that was “less consistent with biomedical understandings of healing and more consistent with…symbolic and social healing” (2015, p. 312). The dynamic of the camp was characterized by an “an assemblage of cultural resources— structures, stories, relational commitments” (p. 305) through which the challenges associated with autism spectrum conditions became not only less impairing but also allowed relationship-building among the participants. Whereas Fein initially believed that the formula of the camp would be highly replicable in other therapeutic settings, her attempts to do so were met with limited success. She later realized that the magic ingredient that she had missed was precisely this network of relationships among the participants. Ethnography can also shed light on the complexities and contradictions entailed in broader treatment approaches or paradigms. For example, Lawlor and Mattingly (1998) drew on three years’ worth of research to describe the complexities involved in family-centered care, the currently dominant framework of service delivery in children’s rehabilitation. They argued that practitioners who strive to be family-centered

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experience dilemmas because this framework “challenges many current institutional structures of practice and deeply held cultural assumptions about how health care is to be delivered” (p. 260). They noted, for instance, that contemporary healthcare service systems still, by and large, value and reward therapeutic interventions that narrowly address the child’s specific physical needs rather than their diffuse social and cultural needs or the concerns, or the values of the child’s primary caregivers (1998, p. 4). In later work, they developed the concept of “healing dramas” to critique the clinical models of rehabilitation and to draw attention to healing experiences that are not recognized in the routines of treatment protocols, such as attention to social and behavioral issues (Mattingly & Lawlor, 2001).

Ethnography Can Provide New Perspectives on Institutional Processes in Children’s Rehabilitation One of the features of an ethnographic mindset is its attention to larger societal phenomena that shape and organize people’s possibilities and limitations. Institutional ethnography is a distinct “method of inquiry” borne out of sociology that seeks to capture the social organization of “everyday life” by locating individual experiences in the context of social institutions such as education or healthcare (Smith, 2005). Institutional ethnography goes beyond individual accounts and instead seeks to identify the “ruling relations,” that is, the social relations that carry out the work associated with governing (which are often invisible or taken for granted) in order to ultimately enable change (Kearney et al., 2019; Smith, 2005). For health researchers, institutional ethnography provides a lens for exploring the gaps between policy and “what actually happens in practice” (Kearney et al., 2019) as well as an ethnical imperative to “support people whose circumstances oblige them to navigate complex institutional landscapes” (Ng et al., 2013). One example of an institutional ethnography in children’s rehabilitation is Ng and colleagues’ research on the coordination of healthcare work in special education for children with disabilities and their families (Ng et al., 2013; Ng et al., 2015). The researchers used a combination of semi-structured interviews, direct observations at school team meeting/Individual Education Plan (IEP) meetings, and document analysis (including progress notes, meeting minutes, standardized test results, legislation, and policies) to understand “how pediatric health and rehabilitation practitioners perform advocacy work when interfacing with special education…in order to support children with disabilities” (2015, p. 2283). They observed, for instance, that healthcare practitioners often advocated “by proxy,” through arming parents with documents, but that parents were ultimately expected to do the legwork of advocating for their children, even when direct contact between healthcare providers and educators would have been more efficient. They also noted that whereas some healthcare practitioners were savvy about how to craft reports that would “work the system,” other practitioners produced well-meaning reports that ended up being

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ineffective as the school professionals considered them to be either beyond the clinician’s scope, or to be incongruent with schools’ available resources or procedures. They outlined several recommendations to help rehabilitation professionals perform advocacy work. They suggested, for instance, that professionals consider the unintended consequences of their advocacy practices and written documents, such as increased parental burden and misinterpretation by education authorities. They also recommended that professionals develop greater familiarity with relevant policies and texts, such as privacy legislation and the Diagnostic and Statistical Manual.

Ethnography Can Improve Design of Interventions for Culturally Diverse Populations In children’s rehabilitation, ethnographic approaches are often used in research with non-Western populations and/or to capture cross-cultural perspectives on issues or conditions where discourse tends to be dominated by Western categories or norms (e.g., Jegatheesan, Miller, et al., 2010, Jegatheesan, Fowler, et al., 2010; ManorBinyamini, 2018, 2019). For example, one medical diagnosis that in recent years has received a considerable deal of ethnographic attention is ASD (Grinker, 2007; Grinker et al., 2012; Grinker & Cho, 2013; Grinker et al., 2015; Jegatheesan, Miller, et al., 2010, Jegatheesan, Fowler, et al., 2010; Manor-Binyamini, 2018, 2019; Solomon et al., 2015; Solomon et al., 2016). One possible reason for this is that ASD as a diagnostic category has considerably evolved over a relatively short time-span, and many of the symptoms through which it is diagnosed are culturally specific: what constitutes “socially appropriate” behavior in one culture may be very different from another. The ensuing knowledge from such research can provide insights into how to make interventions relevant and useful in cross-cultural contexts, and for clients from racialized or minority groups who already face various forms of social oppression or marginalization (e.g., Jegatheesan, Miller, et al., 2010, Jegatheesan, Fowler, et al., 2010). A good example of such work is Jegatheesan and colleagues’ ethnographic research with South Asian families residing in the USA who had a child with an autism diagnosis (Jegatheesan, Fowler, et al., 2010; Jegatheesan, Miller, et al., 2010). Jegatheesan carried out 17 months of participant observation and interviews with 3 families. Her own cultural and linguistic background as a South Asian who was fluent in two of the families’ home languages helped her build rapport with the families and interact with them in culturally appropriate ways. Her research discovered numerous instances of misunderstandings and stereotypes on the part of Euro-American service providers that created barriers to effective working relationships with these families. For instance, the parents prioritized extended family and community connections and activities (many of which involved the use of multiple languages), and resisted therapists’ recommendations to keep the child’s environment “simple” and to limit the use of multiple languages in the household. Jegatheesan’s work included a number

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of recommendations for service providers who work with South Asian families, including the importance of relational qualities (warmth, compassion), employing a strengths-based perspective, keeping the focus on the entire family (including extended family), and taking the time to discuss with families the rationale behind prescribed treatment approaches. Another example of how ethnographic research can help understand culturally diverse perspectives and design relevant interventions is Grinker and colleagues’ work on the cultural attitudes toward autism in Korea (Grinker et al., 2012; Grinker & Cho, 2013; Grinker et al., 2015). Their research reported a great deal of social stigma surrounding autism. Due to its genetic component, an autism diagnosis threatens the family line and the marriage prospects of the autistic person’s relatives. Therefore, children tend to be diagnosed with Reactive Attachment Disorder, a term that in Korean is glossed as “lack of love,” and are roughly equivalent to the (now discarded) North American notion of “refrigerator mothers.” This diagnosis is preferred by both parents and clinicians since it implies that the child’s condition isn’t fixed but can be improved with better parenting. Based on the findings from this study, Grinker and colleagues subsequently adapted and translated an autism information kit for use among Korean-Americans. Some of their adaptations included expanding the section on blame and attachment, and providing more extensive information about the difference between genetics and heredity (Grinker et al., 2015).

Ethnography Can Push Forward Researchers’ Thinking by Challenging Dominant Western Medical Concepts One of the goals of ethnography is to “make the familiar strange” (Spiro, 1990); that is, to look at ourselves through the eyes of the outsider and interrogate our own takenfor-granted assumptions. In children’s rehabilitation, this mindset can both expose and challenge dominant Western norms, categories, and values that underpin and inform approaches to medical care, as well as inspire new approaches (Lambert & McKevitt, 2002). For example, Jegatheesan et al.’s research discussed above did more than just recommend appropriate ways of applying Western medicine and therapies to a non-Western population: their work also challenged some of the normative Western medical approaches, such as the “deficit perspective” and the emphasis on “fixing” that often still prevail in North American medical discourses on disabilities. The South Asian parents in their study resisted the service providers’ focus on their children’s deficits, instead choosing to view their children as a blessing from God. Accordingly, the researchers’ ensuing recommendations for service providers included the need to adopt a strengths-based perspective in their work with families. Another example of a study that challenged normative Western rehabilitation approaches is Gibson and colleagues’ study of participation and activity among youth with disabilities (Gibson et al., 2017). The researchers discovered that the goals of the youth were not always consistent with the goals of rehabilitation interventions. For

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example, whereas “independence” is often the goal of rehabilitation interventions, it was not always prioritized by youth, who were sometimes willing to sacrifice some “independence” in favor of other goals, such as being better understood or conserving energy. This finding led the researchers to critique the normativity of existing rehabilitation intervention and to call for a re-imagining of institutional and programmatic goals and priorities. This study offers an example of how unpacking normative concepts that underpin rehabilitation (such as dependence/independence) can reveal the ways in which healthcare practices are predicated upon larger cultural assumptions, and ultimately open up space for considering how “things could be otherwise” (Gibson, 2016, 9).

Ethnography Pays Attention to the “Big Picture” That Frames People’s Lives Central to the ethnographic perspective is the linking between individual and society, and the particular and the general. People live their lives and make choices within particular frameworks of possibilities and constraints, which are products of larger political, economic, social, cultural, and historical conditions. In childhood rehabilitation, such a framework has been articulated by Batorowicz et al. (2016). One example of work that pays attention to the larger sociocultural context is Johnston and Bradford’s (2019) study of white male working-class English students in an alternative education program, which explained the program’s failure to successfully engage the boys. Johnston and Bradford argued that the program emphasized classically middle-class values such as work preparedness, “individual aspiration,” and self-improvement, but did not address the boys’ class-based values of solidarity and self-fulfillment. For example, one of the ways in which the boys sought to fulfill those needs was through participating in activities such as sports, an opportunity which was not offered through the program. The authors critiqued the program, and England’s education policy more broadly, for leaving behind students who are unable to see themselves in the “normative and dominant notions of success celebrated in popular culture” (2019, p. 1565) that were offered through the program. Another example of an ethnographic project that explicitly attended to the ways in which people exercise agency and cultivate hope for a “good life” within a web of political, economic, and social constraints, is Mattingly’s aforementioned research with African-American families. In her ethnography Moral Laboratories, Mattingly highlighted the intersections between race and social class that structured these parents’ social and economic possibilities (e.g., access to hospitals or treatments) and informed their relationships with healthcare providers. The parents confronted, and had to respond to, a variety of racist stereotypes (which oscillated between the “ghetto mom” and the “Superstrong Black Mother”) as they sought, and advocated for, the “best good” life for their children.

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In this section, we have outlined a number of contributions that ethnographic mindset and approaches can bring to children’s rehabilitation research. An important advantage of observational methods is that they allow researchers to capture what people actually do in real life, as opposed to only what they say they are doing. This has a number of important implications, potentially allowing participants a greater degree of engagement and agency in the research process, and allowing researchers to see how people participate in real-world activities, how organizations and institutional processes actually work “on the ground” and how interventions actually pan out in practice. Another key advantage is ethnography’s attention to the larger social, cultural, political, and economic conditions that frame people’s actions and possibilities. Attending to these can improve the relevance of interventions directed at different populations, as well as challenge the dominant Western biomedical concepts that structure the thinking of Western clinicians and service providers. We acknowledge that ethnography is certainly not the only possible approach to accomplish any of these; however, the nature of ethnographic sensibility (meaning, the mindset, and the methods) makes it particularly conducive to these contributions. In what follows we offer some suggestions for how such a sensibility could be cultivated by rehabilitation researchers who see value in this approach.

Cultivating an Ethnographic Sensibility in Children’s Rehabilitation In elucidating the benefits of bringing ethnography to the table of children’s rehabilitation research, we are not suggesting that all aspects of an ethnographic mindset and methods need to be deployed by everyone and in all research studies; for example, although participant observation can help us identify “the what and the how of culture” (Bernard, 2018, p. 306), it is certainly not suitable for measuring a phenomenon quantitatively. However, we do believe that deploying an ethnographic sensibility can enrich the work that we do. Below we offer some suggestions for how this could be done, notwithstanding the inherent limitations in the health sciences, such as funding constraints.

Start Early Graduate school may present a window of opportunity for researchers to develop an ethnographic research project, which they may never have again in their careers. Students who cultivate an ethnographic sensibility early on in their studies may be more likely to use an ethnographic lens in thinking about, and planning, their subsequent research programs, and to be motivated to productively employ ethnographic methods alongside other research methods in the health sciences.

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Build Relationships with Patients, Families, and/or Service Providers Central to an ethnographic sensibility is the importance of relationship-building with clients with disabilities and their families, or with service providers. One way to accomplish this is to develop relationships with relevant communities or groups that transcend the requirements of one particular research study. For example, a researcher who is truly invested in building relationships may consider joining relevant groups (either in-person or virtually), attending community events related to one’s research interest, and perhaps volunteering with a local organization. This relationship-building should be seen as a marathon, not a sprint: The goal is not merely to partner with relevant stakeholders for the purpose of recruiting participants for a research study, but rather to build a network of relationships which, over time, will allow the researcher to develop a deeper understanding of relevant issues at play, often from multiple perspectives. Admittedly, this approach to relationshipbuilding works best for researchers who are committed to working on a particular issue for a substantial part of their careers. Generalists interested in exploring different phenomena or processes with different populations might consider connecting with a more general “umbrella” organization or community (e.g., a disability network that serves different diagnoses and populations, as opposed to a Facebook group for parents of children with hemiplegia, which addresses the needs of a very particular demographic). Researchers who work on large teams where they do not directly engage with research participants may consider engaging people with lived experiences (in the case of children’s rehabilitation, this means families and/or youth) as co-investigators on their research teams.

Consider “Patchwork Ethnography” One way to reconcile some of the goals of ethnography with the logistical constraints of time and funding is by using rapid assessment procedures, in the health sciences often called the focused ethnographic study (FES) (Green & Thorogood, 2018). The methods used in this approach include in-depth interviews, focus groups, direct observation (rather than participant observation), often in conjunction with activities such as visual drawing or mapping. These methods are used to pursue several focused (rather than open-ended) research questions. Though criticized by some as lacking depth and unable to truly capture why people do what they do (Lambert, 1998), others argue that when used with care, focused ethnographies can generate useful and valid knowledge that can inform health interventions (Bernard, 2018). Recently, a few anthropologists proposed developing a new methodological and theoretical approach to ethnography they termed patchwork ethnography (Gunel et al., 2020, online). This approach calls for the use of short-term field visits and “fragmentary yet rigorous data” while maintaining “the long-term commitments,

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language proficiency, contextual knowledge, and slow thinking that characterizes so-called traditional fieldwork” (Gunel et al., 2020, online). What might such a patchwork ethnography look like in practice? This is something that one of us (Kinga Pozniak) is currently trying to work out in her postdoctoral research based at CanChild, a center for childhood disability research at McMaster University. Kinga has a broad interest in the experiences of parents who have children with disabilities, both in clinical settings and in research. At CanChild, she contributes to a number of research studies that engage parents as co-investigators (rather than as “research subjects” in the traditional sense) as well as other initiatives that involve parents. For example, she helps to coordinate a Family Engagement in Research certificate program for parents and research. She sits on a few family advisory committees wearing both her researcher and parent hats. She is also a regular participant in CanChild’s private group for parents called Parents Partnering in Research, which allows her to build long-term relationships with parents in the group, albeit virtually. Although none of the individual research studies to which she contributes can be classified as “ethnographic” in the traditional sense, she sees the entire package of studies and research-related initiatives as a “patchwork ethnography” that allows her to cultivate the long-term relationships and “slow thinking” that are central to an ethnographic sensibility (Gunel et al., 2020, online).

Read and Cite Ethnographies Admittedly, the use of ethnographic methods is not feasible or appropriate for all researchers and for all types of research studies. However, reading ethnographic works can open up non-ethnographers to new questions, perspectives, and insights, and taking the time to work through a book-length ethnographic manuscript can pay off in gaining the depth and nuance that is often missed in other types of research.

Conclusion In this chapter, we have outlined the tenets of what we term an “ethnographic sensibility” and considered how this can approach can be deployed in children’s rehabilitation research and what it can contribute. These key tenets include prolonged immersion in one’s “field” of study, depth, long-term relationship with one’s interlocutors, integration of different sources, reflexivity, synergies between data and theory, and attention to the relationship between the individual and society and the particular and the general. This sensibility can enrich research in children’s rehabilitation in multiple ways. The use of participant observation in conjunction with other methods offers different possibilities for capturing the voices of participants for whom the traditional interview or survey format does not work and can allow these participants more agency and control over the research process. The ethnographer’s gaze shifts

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between different levels of analysis: people’s actions and activities, the meso-level context of institutional processes, and the “big picture” of social and cultural norms and political and economic conditions. This multi-level perspective can provide novel insights about how people participate in life activities and how clinical interactions and interventions actually work on the ground—knowledge, which can in turn be used to improve clinical interactions and interventions. We suggest that even researchers and/or clinicians who do not see themselves as ethnographers and do not aspire to do ethnographic research, can nonetheless benefit from cultivating elements of this sensibility in their work. This can be done by building long-term relationships with the communities relevant to one’s research area, or even simply immersing oneself in existing ethnographic works on the subject. We argue that the investment is worth it, since many of the aptitudes associated with an ethnographic sensibility—for example, the ability to understand events from the point of view of patients and families, to take into account families’ values and priorities, and to pay attention to the larger context in which events occur—can make for more meaningful research and better care.

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Chapter 9

Ethnography and Its Potential to Understand and Transform the Rehabilitation of Spinal Cord Injury Javier Monforte, Víctor Pérez-Samaniego, and Brett Smith

Abstract This chapter accounts the contributions of ethnographic work for thinking affirmatively about the rehabilitation of spinal cord injury (SCI). The first part of the chapter will provide a concise overview of ethnographic research on SCI in the context of rehabilitation, paying especial attention to research that has challenged normative assumptions and practices of ableist, recovery-oriented rehabilitation. The second part of the chapter will focus on ground-breaking ethnographic research which explores and endorses the development of affirmative connections between people with SCI and their wheelchairs. A small but significant group of rehabilitation ethnographies addressing this topic will be presented and discussed briefly. To conclude, the academic and social relevance of this area of ethnographic work will be discussed, and ways forward suggested. Keywords Affirmation model · Posthuman disability studies · Assistive technology · Wheelchair use · Interdependence · Transferability

Introduction Every year, between 250,000 and 500,000 people sustain a spinal cord injury (SCI) (World Health Organisation, 2013). People living with SCI experience impairment of the communication between their brain and the rest of their body. This impairment affects several body functions, including mobility, sensation, sexual function, and bladder and bowel function. Changes to the body that result from suffering a SCI may include changes to appearance, such as loss of abdominal musculature; functionality, such as incontinence; and independence, such as depending on other people or adaptive devices for transferring or bathing. Besides altering the biological body, SCI also brings about dramatic changes in the social and psychological J. Monforte · B. Smith (B) Department of Sport and Exercise Sciences, Durham University, Durham, UK e-mail: [email protected] V. Pérez-Samaniego Departamento de Educación Física y Deportiva, Universitat de València, València, Spain © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_9

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worlds that people inhabit. SCI is a life-altering event or what Bury (1982) called a ‘biographical disruption’; it is a suspension or rupture of the structures of meaning making that people use to understand themselves and their life trajectories. In order to make sense and learn to live with changes that follow SCI, people tipically spend between three to nine months in a spinal injuries inpatient rehabilitation unit. Within this setting, people are not only taught how to take care of new physical needs (e.g. bowel management and skin care to avoid pressure sores) and corporeal practices (e.g. how to move and how much to eat). As immediate newcomers to an impaired body, they are also shown how to live in an unfamiliar social world, reintegrate back into the community, and reconstruct their identity. Rehabilitation, then, matters deeply. Experiencing a meaningful rehabilitation process makes a difference for individuals with SCI. It improves their health and well-being, and it optimises their chance of living a good life post-injury. Providing a high-quality rehabilitation process is though difficult. Several requirements are needed. One of these requirements is to have a valid understanding of how rehabilitation settings work, and how people experience their rehabilitation process over time. In this chapter, we illustrate how an ethnographic approach might be applied to gain wide-ranging understanding of the rehabilitation process through which people with SCI adjust to their new life situation. Ethnographies generate useful knowledge of a culture and context like rehabilitation whilst also allowing insights into the subjective experience of individuals and groups as they occur within a culture and context like rehabilitation. They illuminate cultural processes such as the production and reproduction of cultural narratives and capture meanings and how these meanings relate to embodied feelings such as pain. Ethnographies can also illuminate what knowledge is shared in rehabilitation between disabled people as peers, and how peers, carers and practitioners interact and relate. Not many ethnographies addressing the rehabilitation of SCI exist. But there are relevant exceptions. To identify them, we conducted a purposive, as opposed to exhaustive search. This strategy cares about conceptual, rather than statistical generalizability, thus allowing us to gather the needed information to illustrate the topic (Ames et al., 2019). In order to present the ethnographies on the rehabilitation of SCI that we found and selected, we will use the organising framework suggested by Morse (1989).

Ethnographies About the Rehabilitation of SCI According to Morse (1989), ethnographies in the field of health care can be divided in two broad kinds: traditional and focused. A traditional ethnography is a large-scale, comprehensive study of the features of a designated culture, and it is undertaken to obtain a comparative understanding of the universal and relative aspects of human behaviour. In a traditional ethnography, the unit of analysis may be, for example, a rehabilitation unit of SCI. Here, the researcher moves into the unit and lives with the people to collect data. Importantly, the data is generated and approached inductively. This means that the ethnographer does not begin the study with a hypothesis or a

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deductive category guiding it. Rather, he or she observes how a number of incidents emerge and then establishes generalities that link them to each other, possibly by generating categories or themes. The works developed by Gubrium and Buckholdt (1982), Laskiwski (1989), and Nelson (1990) can be spotted as paradigmatic examples of early traditional ethnographies in rehabilitation institutions. Gubrium and Buckholdt (1982) conducted an extensive participant observation in a rehabilitation ward, conceived as a situated form of practice of care for disabled. The doctoral dissertation of Laskiwski (1989) drew on extensive data generated over three months using ethnographic methods to identify a miscellany of features of being a patient in a SCI unit, such as patients’ management of free time, the use of medications, wearing equipment that affected patient’s body image, or the use of swearing as a coping strategy, among others. In a similar vein, Nelson (1990) used developmental research sequence model and grounded theory to examine patients’ attitudes, beliefs, and behaviour, proposing a framework for designing a prototype therapeutic milieu in SCI units. In her dissertation thesis, Goldstein (1998) used ethnographic methods to gain understanding of the various ways in which individuals managed their overall involvement in leisure, recreational, and social activities after SCI. In the field of exercise sciences, traditional ethnographies grew in number and variety along the 2000s helping to gain understanding, for instance, of the barriers and facilitators of exercise after SCI (Kehn & Kroll, 2009), as well as the experiences of individuals with SCI participating in physical activity (PA) programs (Levins et al., 2004) or in a adapted gym (Pérez-Samaniego et al., 2017). The strength of traditional ethnographies, such as the abovementioned, is to examine, describe, and provide panoramic understanding of experiences of different actors involved in SCI rehabilitation settings, in particular patients. In contrast, focused ethnographies are small-scale studies concentrating on a specific area of inquiry. A focused ethnography requires less in terms of broad background about a particular group but more about a specific problem area and those aspects of group life that affect the problem being studied. For example, the unit of analysis might be a rehabilitation team studied to understand interprofessional collaboration (Sinclair et al., 2009). Here, interprofessional collaboration acts as a deductive tool that drives the researcher shifting from the general to the specific. Manns and Chad (2001) developed a focused ethnographic study that examined the concept and experience of quality of life for a group of 15 persons with a SCI, identifying nine themes that best represent their quality of life: (a) physical function and independence, (b) accessibility, (c) emotional well-being, (d) stigma, (e) spontaneity, (f) relationships and social function, (g) occupation, (h) finances, and (i) physical well-being. Mahoney et al. (2007) applied an ethnographic design to provide understanding to the experiences of persons with spasticity, finding out that patients personalized the meaning of spasticity and expressed it in ways that differed from clinical definitions. In another focussed ethnography, Angel et al. (2009) investigated the interpretive processes that patients with SCI undertaken to regain meaning in their

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new life situation. Papadimitriou and Stone (2011) illuminated the meaning of the temporal disruption that can occur after traumatic SCI, revealing and articulating the role of human temporality in rehabilitation. Using an ethnographic approach, O’Riley et al. (2014) conducted semi-structured interviews with nine individuals with SCI to explore perceived needs and barriers to information-seeking and online support, finding that online resources can provide important opportunities for social support for individuals with SCI. Likewise, Fogelberg et al. (2017) examined the experience of sleep among 20 participants with SCI, describing their irregular sleep patterns, as well as how their poor sleep affected occupational engagement. Most recently, ethnographic studies have focussed on nurses and their relations with persons with SCI. Lind Falk et al. (2018) have explored how the nursing assistants’ knowledge was shared in a team on a SCI rehabilitation ward, while Strandås et al. (2019) focused on the beliefs and practices of nurses and patients, identifying extensive variations in the degree of closeness and emotional involvement in their relations. Finally, in her ethnographic work, Papadimitriou (2008) coined the term enwheelment to think about the process that people with SCI need to experience in order to learn how to use and live in wheelchairs. The phenomenon of enwheelment has been the theme of other focused ethnographies (e.g. Ben Mortenson et al., 2012; Monforte et al., 2021; Sparkes et al., 2018; Winance, 2019). These are of particular interest to us, not only because we find the topic psychologically and sociologically fascinating, but also because these ethnographies allow us to delve into the power of ethnographies as transformative actors. Before going back to enwheelment, let us now turn to the idea of ethnographies as actors.

Ethnographies as Actors The highlighted ethnographies are not limited to describing and interpreting the rehabilitation of SCI. Intentionally or not, they also enact it; they are actors that may play a performative role. Ethnographies shape how we reproduce, question, and transform dominant logics, theories, and conventional practices around the rehabilitation of SCI. This means that the field of rehabilitation (and the meaning of SCI) becomes what it is based upon what ethnographies reveal about it. To be sure, this is not to overstate the impact of ethnographies. For example, it is not to say that ethnographies are the only cultural product that influence the rehabilitation of SCI, or the most influential one. Likewise, we would not suggest that published ethnographies have direct, deep influence in the structure and culture of rehabilitation settings around the globe. The impact of ethnographies on the cultures they study are at best usually modest and often indirect. Normally, it takes years for ethnographic insights to actually generate change, if they ever do. That said, we would argue that ethnographies have a significant potential to make a difference in rehabilitation and society.

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In the following sections, we aim to illuminate the potential of rehabilitation ethnographies to inspire, support, and even generate change, or potential for change. To provide a concrete example, we will look at how ethnographies have contributed to shift from a negative view of SCI and a related recovery-centred rehabilitation to an affirmative view of SCI and an alternative form of rehabilitation cantered on flourishing through establishing meaningful connections with human and non-human others.

The Affirmation of SCI SCI has been traditionally seen through the dominant medical model (Smith & Perrier, 2014). This model approaches disability as an individual problem. Having a SCI is viewed as a personal tragedy, a negative experience that makes life less worthy. Seen through this lens, people with SCI have been stereotyped either as passive beings that wait to be cured or repaired through medical interventions or as heroic superscripts that are individually responsible of overcoming their impairment and become an inspiring example (to non-disabled people) of resilience and self-sufficiency. In line with this understanding, rehabilitation usually emphasises therapy that attempts to return the lives of people with SCI to ‘normal’ (Buetow et al., 2019; Buetow et al., 2020). In the Western culture, recovery-oriented rehabilitation is dominant. The story in which disabled people overcomes their disability through rehabilitation and gain again their functionality is the preferred one (Frank, 2013). Understandably, then, many disabled people desire recovery and normalcy (Goodley, 2021). However, not every person with SCI wants that. Of relevance to our chapter, diverse ethnographies have revealed and endorsed the alternative view that disability can be lived affirmatively, and that people can view and experience rehabilitation not as a medicalised restoration, but instead as a quest to explore and develop new possible identities and connections. Here, affirmative means more than a mere absence of a negative view of SCI. It means having SCI as a generative part of the identity and appreciation for the body. Yet, this affirmation does not emerge in relation to a naïve positivity or a cruel optimism (Berlant, 2011). Indeed, it grows from recognising the limitations, failures, and hardships that come with a SCI (Clifton et al., 2018), or even from embracing the tragedy involved in sustaining it (Abrams & Atkins, 2020). The mentioned ethnographies have informed the development of theoretical perspectives, models and political orientations, such as the affirmation model of disability (McCormack & Collins, 2012; Swain & French, 2000), critical and posthuman disability studies (Goodley et al., 2014), post-critical rehabilitation (Gibson, 2016), and connectivity-based rehabilitation (Nicholls et al., 2016). Of course, the ethnographies have been at once informed and guided by these intellectual projects, which offer useful tools and ideas to generate and analyse ethnographic data. One of such ideas is that rehabilitation can affirm the dependencies of individuals with SCI towards other people, but also towards material objects, including the wheelchair.

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We now stay with the wheelchair, as this is arguably the most important ‘artifact of disability’ for people living with SCI (Leo & Goodwin, 2014, p. 152). We ask: what do ethnographies say about the affirmation of the wheelchair during the rehabilitation of SCI?

Rehabilitation and Affirmative Enwheelment After SCI: A Look into Some Focused Ethnographies Ground-breaking ethnographic research is being done which explores and endorses the development of affirmative connections between people with SCI and their wheelchairs, or what might be called affirmative enwheelment. To remind, enwheelment refers to the process of connecting with or becoming one with the wheelchair, but also to the process of evaluating and negotiating such connection. When the wheelchair is rejected and perceived as a burden or a barrier to normalcy, enwheelment is lived as a negative experience. Meanwhile, if the wheelchair is being affirmed as part of one’s self and identity, we can refer to it as an affirmative experience of enwheelment. Paying focussed attention to ethnographies in which affirmative enwheelment shows up is relevant for different reasons. First, many people with SCI become longterm wheelchair users. For them, depending on the wheelchair is a basic feature of their impaired condition or, to paraphrase Shildrick (2017), an inescapable dimension of practical embodiment. In this case, developing positive affects towards the wheelchair is kinder and brings more opportunities to ‘live a good life’ (Clifton et al., 2017) than the mere tolerance of the wheelchair, whereby wheelchair dependency is lived ‘uncomfortably’ (Peers & Eales, 2017). Second, ethnographies on affirmative enwheelment have potential for ideological impact. The collective voice of people telling about their affirmative process of enwheelment offers a counter-story that de-stigmatises wheelchair use and helps reimagining disability not as a lack, but as a possibility. This counter-story can resist the discourses that demonise dependence and emphasise (most often unrealistic) ideals of independence. In this sense, it can counterargue the image of the pitiful disabled person that ‘sadly’ cannot walk, which implicitly devalue individuals with SCI and mark them as second-class citizens. Finally, bringing cases of affirmative enwheelment together is important, given that the documented cases are few and dispersed through the literature, and thus can be easily overlooked. Below, we mainly address affirmative enwheelment through examples of ethnographies among people with SCI. However, given that this research is only beginning to emerge, we have sometimes relied on other impairments to provide frameworks for understanding and dialogue. This tactic is also chosen and has potential value, because it shows that the experiences of disabled people might share common aspects. The first case is that of Mimi, a 12-year-old girl with a rare neuromuscular condition (Gibson et al., 2012). In an interview, Mimi said:

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Don’t be scared of my wheelchair, because some people are. It’s just part of me (…) I’m used to people watching me wherever I go, but I don’t really care. This is what makes me me. (p. 1896)

In this comment, Mimi makes a plea for the acceptance of her unique configuration of body-wheelchair. ‘It’s just part of me’ is a plea to accept all her parts, biological, plastic and metal, as Mimi, as her ‘self’, explained the authors. It is not that she has a technology that is added to some essential self, or that she ‘uses’ to enhance her functions. The wheelchair is incorporated into a body that has no start or end point but remains open. Let us introduce now a participant in the study of Winance (2019), Jon, a 55 yearold French man that had a leg amputated following a motorbike accident when he was 35. Jon has a leg prosthesis. He can walk, either with his prosthesis or with crutches. When he was working, he moved about primarily using his prosthesis, but since his retirement, he mainly uses his wheelchair. According to Winance (2019), the adjustment process of Monsieur Jon led to an incorporation of the wheelchair. This is no longer an external object, but became a part of him. As he expressed: You get used to it, the wheelchair is part of you, I couldn’t get by without it anymore. (p. 439)

The wheelchair, here, is not a replacement for a lack but rather a ‘reorganisation’ that exceeds limitations. Elsewhere, the same researcher that explored the case of Jon (Winance, 2010) made an additional explanation point as part of her ethnographicbased reflections, which serves to understand Jon’s process: Not only is the person’s perception of his/her body transformed by the chair, but he/she gradually learns to “feel” the wheelchair, which becomes “his/hers,” which constitutes “his/her body” and which enables him/her to act (p. 104).

Mathew and Kacey were participants in the study of Sparkes et al. (2018). Matthew said: No, you don’t think about it (the chair). You just move. It is part of me … you don’t really think about it because you take it with you everywhere. I have to. It is part of my body now. (p. 157)

Similarly, Kacey said that the wheelchair has become sort of natural … naturally I do things. Your chair, it becomes more and more a part of you. I am in one every day of my life now, so yeah, I think it’s more an extension of my body really. (p. 157)

Drawing on Matthew and Kacey’s words, Sparkes et al. (2018) pointed out that, in becoming en-wheeled, wheelchairs became ‘part of Matthew and Kacey’, and the interface between the natural (human) and the artificial (wheelchair) dissolved through repetition of daily routines and regimes. Two participants from Papadimitriou’s (2008) study are John, a 27-year-old paraplegic, and Bernardo. John said: I put my chair on along with my clothes. … It’s a part of me, … I forget it. (p. 699).

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To be sure, ‘forget the chair’ means to make the chair part of the flesh. In pretty much this sense, Bernardo said that the wheelchair is a part of me. It’s my other half. My mind is one half, the wheelchair is my body. (p. 699)

Finally, a participant in Apelmo’s (2017, p. 102) work called Julia said: It is not the chair you see when you see me. It’s, so to speak, me. For this reason, she says, I would never have a chair that was ugly, that’s for sure! It’s nonetheless a part of me that I bring along everywhere I go.

To add to these ethnographies, a participant in the work of Barker et al., (2004, p. 225) (an interview-based study) said: ‘So the wheelchairs a part of me now’ (Mrs. G. H.), and another participant said, ‘You gotta grow into it (laughing)’ (Mr. E. F.). This is an especially illustrative quote, as ‘You gotta grow into’ can be taken to mean that wheelchair is a material component of his flourishing. It is not something that hinders flourishing, but rather another condition for it. After having observed these cases, it is a risk to romantize the power of individual process of affirmative enwheelment. We should be cautious and remember that becoming affirmatively enwheeled is not a ride in the park. This is in part because we live in an ableist society that idealizes and favours certain bodies (e.g. those that can stand or easily avoid sitting) whilst discriminating against others (e.g. wheelchair users). As Goodley (2017) argued, in an ableist society: People who do not walk are understood as tragic because they do not embody the idealised mobility of the autonomous walker (…) individuals who depend on –or require connections with- others to live are not individuals at all. They are seen as burdens (p. 91)

The ableist society views wheelchair users as always disabled, not enabled by their connection with the wheelchair. A laconic quote of John—a participant in Papadimitriou’s (2008) study—shows that ableist attitudes are at odds with affirmative processes of enwheelment. The chair defines who you are, and who you are is not valued (p. 699).

As John commented, disabled people are valued when they take individual responsibility to become as similar as non-disabled bodies as possible (Gibson, 2016) or, at least, cyborg superscripts that can inspire the non-disabled (Howe, 2011). These ableist processes should be challenged. Connecting with our basic point, ethnographies are a good way to do this by showing that rather than being a burden, a symbol of weakness, incapacity and lack, or merely a tool, wheelchairs can become part of one’s body, identity, and way of living. Ethnographies can help challenge ableism and acknowledge wheelchairs as central actors—but not necessarily villains—in people’s stories of disability. But how? Sometimes, when reading an ethnographic study, we can find a spark of understanding and a resource for inspiring change in a particular observation or a particular sentence of a disabled person. For instance, the plea made by Mimi—the participant in the work of Gibson et al., (2012, p. 1986)—offers food for thought and a compelling message. Her powerful words can resonate and get under people’s skins:

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Don’t be scared of my wheelchair, because some people are. It’s just part of me.

This quote (that we have put in a poetic way for reasons exposed later) summarizes the problem of ableism (some people are scared of my wheelchair) and indicates the response that is required by society (don’t be scared), and the reason why (It’s just part of me). Importantly, Mimi is not asking for acceptance or tolerance, but for recognition. Non-recognition or misrecognition can be a form of oppression and inflict harm. Most importantly, what is recognized here is not the person but the connections between the person and the wheelchair. When this is recognised, wheelchair dependency does not necessarily be seen as a poorer outcome compared to walking but rather as another, morally neutral, way of being and doing in the world (Nicholls et al., 2016). Like other disability scholars, we believe this is an important point in the rehabilitation agenda. Doing more ethnographies that work to challenge ableism is needed. Yet, it is not just a matter of quantity. In addition to expand the body of ethnographic studies, studies need to have more reach. To enable this, we argue that ethnographers need to pay attention to transferability.

Enhancing the Transferability of Ethnographies Smith (2018) defines transferability as occurring whenever a person or group in one setting considers adopting something from another that the research has identified. For example, a rehabilitation practitioner or the director of a rehabilitation centre reading an ethnographic report might want to know: ‘Is this something I can apply to my practice or my center?’ When readers feel as though that this can be the case— when they believe that research overlaps with their own situation and/or they can intuitively transfer the findings to their own action—then the research can be said to generalise through transferability (Smith, 2018). To facilitate this type of qualitative generalisability, ethnographers need to provide rich description and communicate their results in accessible, memorable, and emotionally vibrant ways. Transferability can be therefore related to evocative storytelling as stories have the power to create in readers the idea that they have experienced the same thing in another arena. In that sense, the use of storytelling genres like ethnographic creative nonfiction, performance ethnography, and poetic representations may be particularly useful for realizing transferability. The poetic form that we have used to represent the textual words of Mimi is a small instance, but more significant attempts can be done. In the specific realm of rehabilitation and SCI, there are very few examples of researchers using storytelling techniques to communicate the results of their ethnographies. Let us comment two relevant exceptions. First, Smith (2013) used the genre

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of ethnographic creative nonfiction to examine people’s experiences during rehabilitation of being and having an impaired body as a result of suffering SCI whilst playing sport. The mentioned genre uses fictional strategies to represent the research findings in a storied manner. Smith (2013) highlighted numerous contributions of his ethnographic creative nonfiction story that can be consulted in the paper’s discussion. Perhaps most interestingly, the paper includes the reaction of some readers, which show the potential of ethnographic creative nonfiction to show theory, stimulate change, or alter health behaviour, to capturing what impact a story might have on and for people. To show as but an example, one of the readers said: Thanks for your story about sport and spinal cord injury. I’m not sure if you want a response from me, but I felt compelled to write one. When I got the story from a colleague and read it I thought “a nice story, and very accurate”. But I was doubtful about it. This kind of research is unfamiliar to me. But, after reading it again and some thinking, I thought it would be a very useful resource, and it is. (p. 148)

In another study, Smith et al. (2013) used the genre of ethnographic creative nonfiction to synthesize and communicate a set of studies with over 500 spinal cord injured people. The ethnographic creative nonfiction stories the authors wrote show together the barriers, determinants, benefits, trajectories, emotions, fears, preferred methods, and messengers for delivering important information to men and women living with a SCI. The authors argued that ‘this genre of representation holds enormous potential for researchers in terms of disseminating their findings to diverse audiences beyond the academy, and having real impact’ (p. 2046). Speaking about ethnography beyond rehabilitation, Vannini (2013) went further and suggested communicating ethnography through more widely accessible media such as popular print magazines, Web-based magazines, and blogs. Following Vannini’s call, we see a possibility in the attempt to popularize ethnographies on the rehabilitation of SCI through alternative channels to books and journal articles—even when these articles contain a nonfiction story.

Reflective Summary Ethnographic research conducted in rehabilitation settings is not abundant, but the existing literature has extended and significantly enhanced our understandings of spinal cord injury from the perspective of the people who experience it. Ethnographies provide thick descriptions of the rehabilitation process in which people adjust to their impairment and its associated physical and psychosocial consequences. Crucially, ethnographies have the potential to shape the processes they study and thus contribute to the transformation of disability and rehabilitation. To illuminate this important capacity, several focused ethnographies on affirmative enwheelment have been presented and discussed. We chose to spotlight this area of research due to its relevance and originality. Affirmative enwheelment challenges normative assumptions and proffers a different approach to rehabilitation, one that welcomes ways of being and becoming

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that go beyond functioning and normalisation (Buetow et al., 2019). Although it would still be wrong to presume that every person who has an SCI wants to flourish, it may be just as wrong to assume that all persons with SCI want to recover or normalize their lives. As Goodley (2021) argued, disability opens up new and provocative forms of desiring and, ultimately, of being human—or perhaps, as Goodley and Runswick-Cole (2014) proposed, dishuman. More traditional and focussed ethnographies exploring and assessing the diversity of ways of understanding, doing, and living rehabilitation are needed to advance the field of disability and rehabilitation, as well as to maximize its impact in society. If ethnographies are theoretically sound, accessible, and evocative, their transformative potential will become bigger. We have different opportunities at hand and previous referents to learn from. We are excited to witness how the next generations of ethnographers will develop their work, and how this work will affect the world of rehabilitation and SCI in the future.

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Chapter 10

Ethnographies of Limb Loss and Rehabilitation Craig D. Murray

Abstract Amputation of a limb and beginning to use a prosthetic (artificial) limb present major physical, psychological and social challenges. Rehabilitation following limb loss involves a multidisciplinary team of health professionals, and the challenges involved encompass regaining functional abilities and reintegration to work, family and social contexts and relationships. Qualitative research has played an important role in developing an appreciation of these processes and in recommending how health professionals can improve service provision. Although a range of qualitative approaches have been used in relation to limb loss and prosthesis use, ethnography has a unique methodological contribution to make in furthering an understanding of such issues and informing service provision. While ethnography may take different forms, it usually involves collecting data in natural settings (or, the field) using a combination of data collection strategies, such as observation and interviews, and embedding and interpreting results in the local and wider sociopolitical and cultural systems in which participants live and the research takes place. In this chapter, I review exemplar ethnographic studies of limb loss to highlight the value that such work offers for understanding rehabilitation, and how it can be improved, following amputation. This includes a study of limb loss following war, a military rehabilitation programme for wounded soldiers and a civilian rehabilitation ward. The meanings and experience of limb loss and artificial limb use in particular social, cultural and rehabilitative contexts are therefore highlighted, as is the importance of gender, ethnicity, religion, economics and societal beliefs. Keywords Amputation · Artificial limb · Culture · Family · Multidisciplinary · Qualitative · Prosthesis · Services · Social · Society

C. D. Murray (B) Faculty of Health and Medicine, Lancaster University, Lancaster, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_10

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Introduction Across the world, limb loss is a major cause of disability. For example, in the UK, there are nearly 6,000 new cases of amputation per year (UNIPOD, 2012), or, around 50,000 in total (NASDAB, 2002), and this figure is around 185,000 new amputations per year (Owings & Kozak, 1998), or around 2 million in total (Ziegler-Graham et al., 2008) in the USA. However, the causes and outcomes of limb loss differ in particular ways according to the social contexts in which those with limb loss live. For example, in the developing world, military conflict and workplace accidents result in a younger population of amputees who have mainly lost upper or lower limbs due to trauma (Esquenazi, 2004). By contrast, in developed countries, most amputations are of the lower limb (UNIPOD, 2012) and occur in older people due to diabetes and vascular disease, with poor diet and smoking contributing to these (Esquenazi, 2004). Regardless of the causes or contexts of limb loss, the prospect and aftermath of amputation pose a number of rehabilitation challenges. Within western medical care, these challenges are encapsulated in the nine phases of rehabilitation following amputation identified by Esquenazi (2004). The first three of these relate to surgical procedures: a preoperative stage involving patient education and postoperative prosthetic (artificial limb) plans; surgery and reconstruction procedures and a stage of wound healing, pain management and emotional support. These are followed by three phases centred on the prosthesis: a pre-prosthetic stage, in which the stump or residual limb shrinks, is shaped, and muscle strength is increased; prosthetic prescription, during which an artificial limb is fabricated and prosthetic training during which the wearing and utilisation of the prosthetic limb are inculcated. The final three phases relate to community integration, during which the patient resumes family roles, recreational and community activities, along with gaining emotional equilibrium and developing coping strategies; vocational rehabilitation, where future job plans are assessed and if necessary modified through education and training and lifelong ‘follow-up’ of prosthetic, functional, medical assessment and emotional support. The service provision for the difficulties faced by the limb loss population identified above often involves a multidisciplinary team of health professionals (BRSM, 2018; Keszler et al., 2020). For example, in the UK, Prosthetic and Amputee Rehabilitation Centres (PARCs) for those with lower limb amputations involve prosthetists, physiotherapists, occupational therapists, psychologists and/or counsellors, nursing support and podiatry (BRSM, 2018). Similarly, concerning Australia, Manderson and Warren (2010) note, ‘in order of closeness of contact’ (and with some variation), patients with limb loss work with prosthetists, physiotherapists, occupational therapists, psychologists, social workers and rehabilitation consultants. Likewise, in the USA, Keszler et al. (2020) identify a range of related professionals working as primary and secondary team members across the rehabilitation timeline. In working together as part of a multidisciplinary team in the care of persons with limb loss, it is important that this work is person centred and needs focussed (‘the patient’, Keszler et al., 2020, p. 119) suggest, ‘is the central team member’). Clearly, the experiences and needs of those who undergo an amputation are shaped

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by the particular contexts in which their limb loss occurs. Although the causes of the amputation and the demographic characteristics of amputee populations may differ across global contexts, the loss of a limb presents major practical, economic, social and psychological challenges for the person concerned (Schaffalitzky et al., 2010). For example, amputation may mean that they have difficulty in returning to work due to loss of physical capabilities (Burger, 2009) and problems in managing personal relationships and social interaction (Murray, 2005). One key challenge following limb loss is adjusting to a different body image (Fisher & Hanspal, 1998). This may be influenced by the person’s own negative evaluations of their altered body as well as what they anticipate to be the negative responses from others (Rybarczyk et al., 1992). A large number of quantitative research studies have detailed statistical relationships for the above and other challenges associated with limb loss (see, for example, Horgan & MacLachlan, 2004). While valuable in identifying key variables of interest at particular points of time, such approaches can produce a static picture of these variables that correspond to data collection points and contexts. Therefore, qualitative research, which tends to view experiences as in flux, and negotiated within particular contexts or personal and social relationships, has also been informative in providing an understanding of what it is like to live with amputation and prosthesis use over time (see Murray & Forshaw, 2013 for a review). Such work, which often involves collecting and interpreting non-numerical data, and instead privileges first-person accounts, has been useful in deepening an understanding of a number of complex areas. These have included factors influencing the decision to have an elective amputation (Quon et al., 2011), the experiences of prosthetic prescription by amputees (Schaffalitzky et al., 2011), the management of amputation-related pain (Dudgeon et al., 2006) and communication difficulties between the amputee and the person providing and fitting an artificial limb (Murray, 2013). In addition, as part of a move to involve service users in the planning and development of their own health care (Crawford et al., 2002), qualitative approaches have the potential to make a strong contribution to the design, organisation and delivery of services that meet the needs of this population. For the most part, the qualitative research referred to above has relied on oneto-one interviews with participants to generate the data for analysis (see Murray & Forshaw, 2013). Typically, these interviews are conducted using a flexible topic guide with indicative questions. Although useful in generating participants’ reflections about a given issue, it has been argued that other methods of qualitative data collection are sometimes better suited in providing an in situ, contextualised exposition of particular phenomena or processes of research interest (see Suzuki et al., 2007, for example, regarding sources of qualitative data collection). One particular approach that has a unique methodological contribution to make in furthering an understanding of such issues and informing service provision is that of ethnography. This approach often supplements one-to-one interviews with detailed observations of behaviour over a protracted period within naturally occurring contexts. In order to understand the intersubjective dimensions of particular social phenomena, participants or informants are frequently drawn from the range of

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relationships that surround it (e.g. patients, family, health professionals and so on). This diversity of participants and data is demonstrated in Manderson and Warren’s (2010) ethnographic study of an amputation rehabilitation ward. They argue that ‘ethnographers have an important role to play’ in ‘exploring various behavioural, organisational, and social factors that shape the usual contexts of therapeutic relationships in which doctors and other health professionals negotiate with patients and with each other to minimise injury, infection, and time in hospital while maximising short- and longer-term outcomes’ (Manderson & Warren, 2010, p. 1418). Despite the advantages of ethnography for studying rehabilitation concerning amputation and prosthesis use, the approach is still largely overlooked by researchers of these topics (Hoffman, 2013). Therefore, the use of ethnography for studying rehabilitation and limb loss provides the focus for the remainder of this chapter. I begin by first expanding detail of what ‘ethnography’ is, before reviewing three exemplar studies of ethnography and limb loss.

Some First Notes on Ethnography Ethnography (derived from the Greek ‘ethno’ to denote people of a common origin or culture and ‘graphein’ ‘meaning’ to write’) is one branch of qualitative research that aims to gather and interpret contemporaneous, observational data about human activities and groups as they occur in natural settings over time (Bowers, 1996). It has its roots in anthropology, where early researchers would often live for lengthy periods among groups of people whose language and customs were unknown to them to develop a better understanding of these. It further developed in sociology during the early decades of the twentieth century, particularly in the USA, where subcultures such as criminal gangs were the focus of study. Bowers (1996) notes a particular development in ethnography during the postwar years when it began to become associated with one form of theorising in the social sciences, that of symbolic interactionism (see, for example, Prus, 1996). This approach emphasised people as actively making meaning: they behave towards things according to the meaning they have for them; meanings are forged within social interaction; meanings are modified through a process of praxis and interpretative activity (Bowers, 1996). Since its early beginnings, ethnography has since branched out across the human and social sciences, with researchers from a broad range of disciplines, addressing a plurality of research foci and theoretical concerns, finding utility in its foundational principles. However, it is important to emphasise that ethnography is not a unitary approach, but rather a range of approaches drawing on different traditions and theories. Due to the diversity of ways in which ethnographic research can be instantiated, there is no single step-by-step or ‘recipe’ guide to conducting such research. Rather, ethnography is flexible enough to accommodate a variety of data collection and analysis procedures. Nevertheless, it is useful to identify what ethnographies tend to have in common. Therefore, ethnography can be characterised in the following ways (see,

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for example, Hammersley, 2018). It is a qualitative approach to data collection and analysis that studies social interactions within specific cultural or local contexts. It attempts to capture the point of view of those under study over an extended period (although ‘rapid ethnographies’ (see Andreassen et al., 2020, for example) may involve time limited but intense fieldwork observations and interviews) and normally uses a combination of participatory, observational and conversational methods of data collection. In writing up the outcomes of their investigation, the researcher attempts to embed and interpret study findings within the local and wider sociopolitical and cultural systems in which participants live and the research takes place. The above features and concerns mean that ethnography has proved a useful approach for studying rehabilitation in relation to a variety of health conditions across a range of settings. For example, it has been applied to hospital words (van Belle et al., 2020), doctors’ surgeries (Gabbay & Le May, 2004) and community health centres, such as children’s centres (Burton et al., 2019). In this chapter, I have a particular concern with conveying the utility of ethnography for understanding rehabilitation following limb loss. In what follows, I focus on the unique methodological opportunities that ethnography provides for studying and improving the experience, organisation and effectiveness of multidisciplinary rehabilitation service provision for people following limb loss. Having introduced what ethnography is and how it can be used, in the remainder of this chapter, I turn my attention to setting out some of the major insights that key ethnographic studies have provided to understanding rehabilitation following limb loss.

Three Key Ethnographic Studies Regarding Limb Loss Although a relatively small body of research, it is impossible to be exhaustive and do adequate justice to the available literature regarding ethnography and amputation in my overview here. Therefore, in what follows I review three key, or what I consider exemplar, ethnographic studies of limb loss to highlight the value that such work offers for understanding rehabilitation, and how it can be improved, following amputation. I have deliberately chosen three studies from very different social, historical and cultural contexts because I think that together these demonstrate well how ethnography is particularly suited to elucidating the material and social context that gives rise to certain meanings and understandings of limb loss. The first of these is French’s (1994) consideration of the experience of amputees and those around them living in a military camp for people displaced by the war in Cambodia. This study demonstrates how limb loss was interpreted according to the unique circumstances of life in the camp and how such understandings were also filtered through traditional societal expectations of gender and religious frameworks. The next two studies focus on rehabilitation specifically. The first of these is Messinger’s (2010) ethnographic study of a military rehabilitation program for amputee patients in the USA, in which he contrasts the rehabilitative goals of the military with those of an injured serviceman. Here, we see that these goals may

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diverge resulting in dissatisfaction by the person being rehabilitated and a sense by the rehabilitation team that the desired outcomes were not achieved. The final study considers Hoffman’s (2013) study of prosthetic training for people with limb loss in an Israeli rehabilitation hospital. For Hoffman, the principles on which the state of Israel was formed provide an important insight into understanding the pragmatic and discursive practices of physiotherapists who teach patients how to incorporate their prostheses into their body both in how they move and appear to others, but also in how they refer to their artificial devices in anatomical terms. In what follows, I present each of these studies in more depth.

Amputation, Culture and Religion French (1994) provides an ethnographic account of amputees living in a military camp on the Thai–Cambodia border for civilians displaced during the guerrilla war that followed the defeat of the Khmer Rouge. These amputees were primarily former soldiers, young males who sustained injuries during service for a military faction opposed to the communist government installed when the Vietnamese army ousted the Khmer Rouge command in Cambodia. The camp had been in existence for 7 years at the time of French’s data collection. With a population of 180,000 people, and under military control, food rations and simple building materials of bamboo and thatch supplied by the United Nations primarily supported the camp. Inside the camp, with few opportunities to obtain cash, people exchanged goods and services, with some trading on the black market on the outside border. Within this constrained economic milieu, camp dwellers attempted to accomplish the demands of family life through traditional male/female gender roles of provider and housekeeper. The camp provided a comparatively dense population of amputees. The conflict in Cambodia involved the extensive and indiscriminate use of landmines which, as well as causing the deaths of tens of thousands of civilians and soldiers, resulted in more than 30,000 amputees—or around one in every seventy people living in the Thai–Cambodia border. French’s study drew on two years of fieldwork, incorporating observations and interviews with those who had lost limbs and other camp occupants, alongside consideration of the context and social organisation of the camp. French’s original intention was to focus on the ‘psychological’ (how their bodies were experienced by amputees) and ‘cultural’ (how the wider population is impacted by such large-scale bodily disfigurement). However, as the study developed, it became apparent to French that the responses to these questions could only be understood with reference to the political, economic, historical and religious milieu of the people and region. Initially, French had supposed that amputees would be seen as a reminder of the war that had raged there for so many years, but that they would receive a compassionate Buddhist response. What French found was that amputees did not provoke a general anxiety about the war, but more specific anxiety about personal safety. Young, male amputees in particular had a reputation for violence and theft and were avoided. They were looked down upon and rarely received compassion.

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Amputees themselves felt abandoned and degraded by their families and society in general. French argued that these experiences and reactions were borne of the material circumstances of camp occupants. Soldiers who sustained limb loss faced multiple social consequences involving the undermining and loss of reciprocal supportive relationships. Most soldiers within the camp were ill-suited or lacked opportunity for alternative work. Their decision to offer military service to their commanders was largely pragmatic rather than ideological; in exchange for their labour in the projects of war, soldiers received the protection and support of someone more powerful than themselves. When they lost a limb, they lost their use and therefore entitlement to the scarce resources at their commanders’ disposal: ‘Our commanders just need people who can do their work for them. When we cannot work anymore, they just throw us away’ (French, 1994, p. 79). Limb loss also left male soldiers unable to perform the protector and provider roles within their family that social norms regarding the sexual division of labour dictated. With the absence of extended kinship networks and familiar neighbours wrought by the displacement of war, camp life was dangerous, and able-bodied males were the primary form of defence from attack and robbery. The loss of these key abilities meant the amputee often felt shame and concern that they would not continue to receive their place in, and support of, their family: ‘If I cannot support her, maybe she will leave me too’ (French, 1994, p. 80). Contrary to French’s expectations, the prevailing Buddhist beliefs did not result in either self-compassion or compassion from others. Key here was how the concept of karma, or destiny, was interpreted in light of people’s material circumstances. Although Buddhist teaching posits that a person’s karma (and therefore any current suffering) is the sum result of their good and bad actions accumulated through multiple reincarnated lives, it also stresses that karma can be improved through meritorious actions in the present. French explains that, traditionally, Cambodians had used karma to explain and accept negative circumstances that were beyond their control, such as crop failure or the death of a member of the family. Karma performed a soothing function for them. However, in the context of the war and their impoverished, precarious existence in the camp, the sudden loss of a limb signalled a ‘rapid downturn in one’s fortune, a sudden and inauspicious ripening of one’s karma… [that] does not bode well for the future’ (French, 1994, pp. 81–82). The original interpretation of karma was therefore reinterpreted: and karma became seen ‘as irrevocable rather than open and subject to change’ heralding ‘a much more difficult life in the present for the amputee and his family as well’ (French, 1994, pp. 82–83). Amputees were viewed as a ‘bad risk’ and avoided by others in order to prevent being embroiled in their unfolding misfortune. French describes her study as phenomenological in that it is concerned with lived experience and its meanings. However, these meanings are located within the intersubjective domain of social relations and cultural signs. For French, the understanding of subjective experience requires the taking into account of the person’s involvement in relations of production and power. The social nature of the life world means that, while we experience as individuals, the ‘what’ of experience is constituted through complex interwoven subjectivities. French, therefore, skilfully articulates the way in

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which the meaning and experience of amputation for both the person who experience it directly and those around them are a product of the sociopolitical context within which they are embedded.

Rehabilitation in a Military Centre As French’s study demonstrates, ‘rehabilitation’ is constrained and shaped by social contexts and relationships. However, even where these contexts seem well disposed to the needs of limb loss populations, problems may still arise. Messinger’s (2010) ethnographic study of a military rehabilitation program for amputee patients in the USA provides a detailed exposition of how such programmes do not always align with the rehabilitative goals of individuals. Messinger collected data over an 18month period, using a combination of interviews, conversations and observations in occupational and physical therapy clinics with a soldier with limb loss and rehabilitative professionals (including physiatrists, occupational and physical therapists). His primary focus was on Robert, who became a below-elbow and below-knee amputee as the result of stepping on an explosive device while on military deployment in Iraq. Data were collected directly through interviews with Robert (beginning 9 months after the explosion), conversations with the rehabilitation team during clinics and observing interactions and conversations between Robert and these professionals during rehabilitation activities (such as when learning to improve walking gait with a prosthesis). This combination of data collection strategies and informants over a protracted period enabled Messinger to build up a detailed picture of the way in which the programme was instantiated and experienced by all parties. One of the outcomes of this study was the identification of two models of rehabilitation. The first of these was that of the programme, in which physical functioning is emphasised via a sports model of rehabilitation. The second of these was that of the amputee patient, whose rehabilitative goals were anchored in the interests and concerns he had regarding a future life he wanted to develop. Messinger identified how these two models were often in conflict and argued that rehabilitative programmes for people with limb loss should consider and address both the physical body of the patient and ‘the social world that patients have inhabited and will inhabit’ (Messinger, 2010, p. 281). For professionals involved in delivery of the rehabilitation programme, optimal physical functioning was paramount as research indicates that strength and good balance are required for optimal prosthesis use. In particular, sport had both symbolic value and practical utility for these professionals in attaining rehabilitation goals. Not only was sport activity expected to help improve strength and balance, but it was anticipated to echo and continue patients’ experiences of endurance training and requirements for a high level of physical activity that characterised life in the military before limb loss. However, Messinger argues that the focus on functionality in the military amputee rehabilitation programme, in which patients were able ‘to perform many of the symbolic markers of their military group’ (Messinger, 2010, p. 284), was

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to the detriment of the rehabilitative goals of those patients whose primary identity was no longer forged through their service in the military. The values that reflected the sports model of rehabilitation, with its focus on physical functioning, were evidenced in the interactions Messinger had with staff involved in the programme. For example, a physical therapist told him, ‘If you can walk without canes or even run on a prosthetic leg, then you can see that you can pretty much do anything you want. You can meet the challenges you face as an amputee’ (Messinger, 2010, p. 282). Where patients’ own level of commitment to these rehabilitative goals appeared to wane, the goals did not change but the therapist instead looked to work with patients whose goals continued to be aligned with those of the programme: ‘He’s going to work on this when he’s ready. We can’t make him, and in the meantime, I have other patients I can work with’ (Messinger, 2010, p. 297). Initially committed to achieving a high level of function using artificial limbs, Robert’s own rehabilitation goals diverged from those of the programme over time. As he made sense of the changes resulting from his injuries and his perceptions and desires for his future, Robert’s goals were transformed. In contrast to his care team, who expressed that the best patients were ‘ex-high school, athletes who just do whatever it is that their coach tells them to do’ (Messinger, 2010, p. 289), Robert wanted to plan his own goals to fit an anticipated or desired future: ‘I see much more of what’s going on in my life looking ahead… I want to decide about law school or try to find a career job. And, compared to the rest of my life… running [is] just not high on my list of priorities’ (Messinger, 2010, p. 204). As Robert’s own concerns became more distant from those of the programme and his desire to be more involved in planning his rehabilitation challenged the more compliant patient valued by the care team, Robert grew increasingly dissatisfied with the amputee rehabilitation programme. This in turn was accompanied by a perception by his care team that his recovery fell short of how successful his recovery could have been: as one physical therapist stated, ‘[He] wants to be able to do things, but isn’t as interested in going through the steps of what he has to do’ (Messinger, 2010, p. 293). What is clear from Messinger’s study is that the content and methods of the rehabilitation programme continued to be informed by the values of the military and aimed to continue a service personnel identity.

Rehabilitation in an Israeli Orthopaedic Ward In contrast to Messinger’s study of a military rehabilitation programme, Hoffman (2013) provides an ethnographic study of prosthetic training for civilians with limb loss, set in an Israeli rehabilitation hospital. She situates her study within the sociohistorical background of the Zionist foundations of the Israeli state, which she argues modelled a national identity based on ‘the strong, active soldier, a conqueror and defender of the land’ that was ‘a mirror image of the weak and persecuted Diaspora Jew’ (Hoffman, 2013, p. 230). Within this climate, Hoffman highlights immigration

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policies that excluded people who were unable to perform productive tasks (e.g. the sick, old and disabled) from being considered as citizens within the fledgling state. It is within these particular features of the Israeli context that Hoffman frames her findings of the meaning of rehabilitation. Data for Hoffman’s ethnographic work came from observation of sessions between physiotherapists and amputees in a physiotherapy hall on an orthopaedic ward, using the ‘close and unmediated observation of the participants’ words and actions in their natural setting’ (Hoffman, 2013, p. 233). The hall was a large room and included beds, athletic equipment such as weights, gym balls and practice mattresses, along with a walking track, 5 m long, with bars on each side. Through this work, Hoffman found that rehabilitation comprised of pragmatic and discursive teaching strategies that together worked to transform the prosthetic limb from a technological aid into an integral part of the body. Hoffman’s work is informed by theory that stresses not only the functional properties and lived experience of the body, but how bodily comportment is a product of socially accepted values and aesthetics. These concerns are reflected within the observational data of the study in several ways. First, Hoffman notes therapists’ emphasis on the exclusivity of prostheses in regaining the familiar look and expression of bodily movement that characterised life before amputation. For example, in one exchange with his therapist, a patient suggests ‘Maybe we’ll work with crutches today; I don’t have the energy for the effort’ (Hoffman, 2013, p. 234). However, the therapist objects to this: ‘No, you’d better not, crutches won’t give you anything for now… You need to stand on both legs and practice walking’ (Hoffman, 2013, p. 234). In another exchange, a therapist asks another patient, who comes to physiotherapy leaning on a cane, ‘What’s with the cane? Come, walk towards me without the cane’, imploring him, ‘you have to try’ and ‘Don’t walk crookedly’ (Hoffman, 2013, p. 235). The patient’s own explanation for his use of the cane, namely to aid his balance, is delegitimised by the therapist because it is contrary to accepted practice: patients are expected to only use a prosthesis. A similar observation is noted in regard to a woman sitting in a wheelchair waiting for her session who is told: ‘We’re working here; we’re getting you out of this chair’ (Hoffman, 2013, p. 235). A second broad observation by Hoffman concerns how successful prosthesis use is achieved. Exhortations to use the prosthesis are insufficient for conveying how this should be done properly. Rather, physiotherapists must teach compensatory motor skills that help improve the usage of a prosthetic limb. This might involve paying attention to physical indicators in order to receive feedback on progress in reaching a goal, such as in the following: ‘bend your knee harder and lift… feel how your back hip muscles tighten [the therapist is grabbing Debby’s hip muscles]. Here, feel how your muscles tighten’ (Hoffman, 2013, p. 236). In another example, the therapist provides instruction regarding how to sit down properly: ‘The chair is right behind you, now reach out backwards and lean to catch the chair’ (Hoffman, 2013, p. 236). However, when the patient leans back, fails to reach the chair, and then ‘crashes down’ on the seat, the therapist’s response is, ‘Don’t get nervous, you don’t have to throw your body like that, practice … You have to learn how to catch the chair properly so that you can sit down comfortably’ (Hoffman, 2013, p. 236). Hoffman notes that

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the therapist emphasises the need to practise in order for these skills to be learnt and performed fluently. That is, the purpose of inculcating such compensatory skills goes beyond providing improved functionality and is designed to eliminate visible behaviours—limping, bending or dragging one’s prosthesis—that detract from the desired aesthetic of the normative able body and therefore disclosure of prosthesis use. A third observation is that pain is a normalised feature of training to use a prosthesis; it is to be expected and endured. Pain and discomfort were ‘constantly present’ in Hoffman’s observations of prosthetic training and were ‘handle[d] as part of the therapeutic routine’ (Hoffman, 2013, p. 238). For example, in answer to the therapist noting that they had heard adjustments had been made to one patient’s prosthesis by a technician, the patient responds, ‘Yes … But it’s still sore … I’ll show you’ (Hoffman, 2013, p. 238). In answer, the therapist notes no new changes in swelling or discolouration to the residual limb. However, when the patient continues, ‘it [the prosthesis] has left marks on the skin’, the therapist states, ‘It should take time …you need to carry on practising … It will take its course and get better but now we have to work’ (Hoffman, 2013, p. 238). In such interactions, staff conveyed a perception that pain was an integral and accepted aspect of rehabilitation in the pursuit of normalcy through prosthetic training. A final analytic observation by Hoffman is the way in which therapists’ talk fostered the use of anatomical terms to refer to prosthetic technology. In some interactions, this tendency could confuse patients. For example, when one therapist instructs a patient with a left above-knee amputation, ‘Now stand up on both your legs with your knees straight, left and right’, the patient asks, ‘What’s ‘the left’?’. The therapist’s response is ‘Your left leg … Straighten up your knees, I want both your legs parallel at the same line’. The patient’s uncertainty is continued by his response, ‘The prosthesis, too?’ and then clarified by the therapist: ‘Prosthesis, too; when we say left we mean prosthesis’ (Hoffman, 2013, p. 239). In other interactions observed by Hoffman, this uncertainty had dissolved during the rehabilitative process through therapists’ continued use of anatomical terms to refer to the prosthesis: the hinge became the ‘knee’; the plastic base of a prosthetic became a ‘foot’. Hoffman argues this discursive practice meant therapists were not only teaching patients how to ‘walk the walk’ but also how to ‘talk the talk’. The result of this was to ‘silence the spoken expression of disability since we no longer hear of the ‘deviant’ bodily condition— prosthesis and stump. Disability now disappears not only from the public eye but also from the public ear’ (Hoffman, 2013, p. 240). Taken together, Hoffman argues her findings evidence how physical therapy following amputation comprised of a set of practices that work to regain and recultivate bodily competences through prosthetic limbs. The conventionality of these practices and aids is challenged by Hoffman, who notes patients from non-Western cultural backgrounds often resist them. However, Hoffman’s own suggestion for the compliance of the patients in her own study is twofold: that such medical staff have the power (‘professional authority’), knowledge and expertise to guide their treatment and that they share the ideals of these staff regarding the treatment of such altered bodies. Hoffman argues that this latter, shared understanding—although a

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widespread feature of Western society—has a particular resonance with ‘the Zionist call for a collectivist, thoroughly able-bodied society, supported by medical practice’ (Hoffman, 2013, p. 242).

Discussion Within this chapter, I have sought to convey the particular benefits of ethnography in bridging a gap in research regarding rehabilitation and amputation. I began by first explaining how qualitative research, more broadly, had proved useful in informing and elaborating on quantitative studies regarding limb loss. However, despite the benefits that have accrued from qualitative research, I also explained that ethnography provided unique benefits for studying a variety of rehabilitation processes and contexts surrounding amputation. Whereas qualitative research in general has allowed for exploration of experience, meaning and understanding for limb loss populations, I argued that ethnography had certain advantages and contributions to make. Foremost of these is ethnography’s concern with observing social interaction within specific cultural or local contexts. These make it well suited to studying the different phases of rehabilitation following limb loss identified by Esquenazi (2004). However, to date the application of ethnography to these contexts has been limited. I provided a summary of three exemplar studies in order to illustrate the unique strengths of ethnography for studying rehabilitation and amputation. French’s (1994) study of soldier amputees living with their families in a military camp on the Thai– Cambodia border demonstrates how the meaning and experience of amputation for both the person with limb loss and those who encounter them are shaped by the sociopolitical context in which they are embedded. Here, the material and economic consequences of amputee bodies are paramount. Similarly, Hoffman’s (2013) and Messinger (2010) studies of the work of patients and rehabilitation teams elucidate the role of military and cultural values, respectively, in structuring the content and activities of therapeutic interventions. These studies are part of just a small body of ethnographic work on limb loss, limb difference, prosthetics and rehabilitation. While Hoffman’s (2013) and Messinger (2010) work focusses on ‘prosthetic training’, this is just one of the nine rehabilitation phases identified by Esquenazi (2004). Many of these stages are focussed on education of the patient, behavioural adherence to medical regimens and providing emotional support as well as developing coping strategies that facilitate reintegration into valued social roles and activities. Yet, the overview of ethnography here highlights how the effective accomplishment of these milestones involves an appreciation of the social contexts in which these rehabilitative goals are put into practice. There is clearly much more scope for ethnography in contributing to a better understanding of these. Such further work has the potential to make a strong contribution to the effective design, organisation and delivery of rehabilitation services for limb loss populations.

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Conclusion In conclusion, the present chapter has focussed on the utility of using ethnography for studying and informing therapeutic interventions following limb loss. The strengths of ethnography include the utilisation of multiple informants (e.g. patients, family members and health professionals) and data sources (interviews, naturally occurring conversations and observations) over protracted periods of time when participants are reciprocally engaged in the phenomena of research interest (e.g. teaching/being taught how to walk with an artificial limb). The exemplar studies presented here are illustrative of the unique potential of ethnography in making particular insights and understandings available than are possible using alternative methods of data collection and analysis. I hope that the detail provided here regarding what such research can ‘look’ like and what it can achieve encourages others to conduct similar work in a number of hitherto neglected areas of amputee rehabilitation.

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Chapter 11

Navigating Transitions: Liminality, Ethnography and Stroke Rehabilitation Elizabeth Taylor

Abstract This chapter uses Victor Turner’s concept of liminality as a theoretical lens through which to inspect various aspects of ethnography and stroke rehabilitation. Liminality is a productive concept for illuminating the experience of a stroke as a moment ‘in and out of time’ that marks a sudden separation from the life that preceded it. The stroke unit, a place of transition, is a liminal space. The purpose of a stroke unit is ambiguous, with priorities varying from one hospital to another. Patients lack agency as they are moved through these transitional spaces, and complex, individualized decisions are made by multidisciplinary teams on behalf of patients. The potential of rehabilitation for guiding people through the liminal wilderness to a better state is not consistently fulfilled, though there are valuable exceptions to this. Liminality is also used in this chapter to reflect on the process of transitioning from clinician to ethnographer, focusing on the fruitful awkwardness of being ‘betwixt and between’ groups and navigating decisions about presentation of self. The aim here is not to draw comparisons between the experiences of a researcher and a stroke patient, but to show how the process of doing ethnography and applying theory reveals new insights from familiar stories. Keywords Stroke · Rehabilitation · Liminality · Transition · Ethnography

Introduction Liminality is a transitional phase of being ‘betwixt and between’ states and is associated with ambiguity, loss of former structural ties and disorientation (Turner, 1987). In this chapter, I will offer liminality as a fertile concept to explore different aspects of ethnography and stroke rehabilitation. I will present the experience of having a stroke as a sudden separation and loss of former status and roles, leading to the liminality of transitory life on a stroke unit. I will suggest that stroke units are liminal spaces not only in the sense that they are a threshold between the stroke and aggregation E. Taylor (B) Faculty of Health, Social Care and Education, Kingston University, London, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_11

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back to real life, but also because there is ambiguity in their purpose and essence. I will frame the strangeness of conducting ethnographic research within the concept of liminality, reflecting on the transition from expert clinician to novice ethnographer in a familiar field and focusing on questions of purpose and belonging. Managing problems of positionality and constantly navigating your presentation of self can give you a headache, but I hope to show the potential offered by finding oneself at the margins, as neither insider nor outsider. It should be noted that by using liminality as a theme in this chapter I do not intend to draw parallels between the discomfort of an ethnographer and the catastrophic experience of a stroke. Instead, I hope to show how going back and forth between theory, what is seen and what is said is part of a critical enquiry that leads the ethnographer to make connections and find stories that advance our investigations of the social world. Prior to undertaking the study described in this chapter, I worked as an occupational therapist in stroke rehabilitation. I left my job to become a full time Ph.D. student, using ethnography to explore the stroke unit as a field. The study focused on the work of occupational therapists (OTs), physiotherapists (physios) and speech and language therapists (SLTs). The context for the study was the newly introduced auditing of therapists against the benchmark of the ‘45 min guideline’, which stated that each patient should have 45 min of each therapy per day (Intercollegiate Stroke Working Party, 2012; Taylor et al., 2018). I would spend months immersing myself in the world of the stroke unit, unlearning how to be a therapist as I learnt how to be an ethnographer. An ethnography is an interpretative account, and its authority relies on systematically gathering and analysing data, integrating with participants in their natural setting and using and developing theory (Madden, 2010). Going ‘behind the scenes’ of the research process I intend to show how the statelessness of the researcher can illuminate individual stories that in turn lead to the unfolding of broader narratives. Not all strokes lead to a stroke unit admission, but the patients who require that service have had a life-disrupting experience, and suddenly find themselves in a state of loss (Ellis-Hill et al., 2008). This may include loss of a former identity, roles, abilities, status and purpose. I will discuss the potential role of rehabilitation in aiding the transition out of this limbo of statelessness. Rehabilitation has been found to be the key to rebuilding a life, status, roles and a sense of direction (Dworzynski et al., 2015), but this is not necessarily something that stroke units are providing. I have previously noted that the terms ‘therapy’ and ‘rehabilitation’ lack clear definition, and a lack of consensus about their definitions may relate to variation in the way stroke unit therapy is delivered (Taylor et al., 2015). I will describe the three different stroke units I spent time observing and highlight the ambiguity of their purpose. I will show that the transition beyond the stroke unit involves complex and significant decisions made by teams who are constrained by factors beyond their control. Ethnography does not always seek to make recommendations, but I hope that readers will draw conclusions about the need to provide more comradeship and guidance to those affected by stroke and to address the systemic shortcomings preventing people from having the rehabilitation they need to move beyond a ‘limbo of statelessness’.

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A Stroke Strikes: Separation and Wilderness The concept of liminality described by van Gennep was developed by Victor Turner in the 1960s (Turner, 1969, 1987). Turner discussed how liminal phenomena present a ‘moment in and out of time’ revealing that some social bond has ceased to be. He likened it to being dead, in the womb, or invisible. It is an experience like darkness, the wilderness and an eclipse of the sun or moon. Early on in my research I reflected on my feelings of being ‘on the threshold’, having shed my professional skin to go into a familiar field ‘naked’; without status. As I went deeper into unpicking these reflections I noticed that the concept of liminality had even more potential as a useful concept for understanding the sudden, confusing and devastating experience described by stroke patients. Every patient interviewed across three different stroke units had a story to tell about the moments that had changed a normal, inconsequential day as their former selves into a marker of before and after, when nothing would be the same again. When the ambulance came and picked me up off the floor, I was in the back garden. I’d just been looking at the strawberries and had picked a couple, and I was in the process of eating one, in the back garden. It was about 7, 8 o’clock, getting dark. I stepped back, and got caught on a little stump in the ground. I twisted around, fell down, my head amongst the leaves, bracken under the tree - only a small tree - and I fell gently, I didn’t bash myself or anything like that. Just did a sort of twirl, and tripped on this stump. Fell down, in amongst these leaves, and bracken and all that, then I heard some people saying “Oh, is he alright? Shall we call an ambulance?”. And then before you could say Tommy Tiddle, they’d called an ambulance.

This was the story of Ed’s stroke. Ed’s slow motion recall of that moment is almost a majestic memory, but the story he told of ‘after’ was laden with distress and frustration at his loss of agency. Ed had been transferred from one hospital to another since the stroke, and this was his fifth stroke unit. His admission was prolonged, while re-housing was arranged for him to live in a wheelchair accessible property, holding him in a limbo of hospital gowns and a routine that did not suit his nocturnal tendencies. Ed made no secret of how much he hated hospitals and mistrusted healthcare professionals. All decisions were now in their hands, and instead of returning to his previous home, he would move to a new one he had not had a part in finding. The sudden strangeness of the stroke was also described by John, who was a patient on a different stroke unit. Like Ed, John somehow found a small detail of mundane beauty in the awful moment of confusion and loss. One minute he had been walking home after laughing in a café with a friend, and then inexplicably he was feeling ‘absolutely terrible’ and struggling up the stairs of his block of flats seeking help. He described his gratitude for the ‘beautiful chair’ brought by a neighbour, while the ambulance was called. There are parallels here with the Life Threads Model (Ellis-Hill et al., 2008), which illustrates the broken life threads and disrupted narratives that occur when a stroke happens. Raf’s story involved a disrupted attempt at the morning routine, attempting to shower before work but dropping to the ground and discovering the incoherence

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of his speech when he telephoned a friend for advice. He too felt confused by the sudden change in himself. I go downstairs, feel terrible, and I don’t understand what’s happened with me… In the moment I can do nothing.

These stories were told within interviews with patients I had already spent time with during their sessions with therapists. The interviews felt like precious times, when individuals could be briefly lifted from their position as patients (being done to, moved around and advised), to weavers of their own narrative. As one patient said to me during an interview, ‘these stories are who I am’; but in the bustling business of ward life, there was no time or space to tell them. Raf had already had a long hospital stay before being transferred to the stroke unit where I met him. In the weeks when I got to know him, Raf emotions rolled and tumbled. He was zealous about his therapy and worked hard between his therapy sessions, making his own bed and doing his speech and language exercises. In their therapy office, colleagues discussed whether they were offering him the right balance of risk and independence. He had cut himself badly when trying to shave himself, and they worried about his vulnerability. He was in distress, and I followed his physiotherapist and therapy assistant to see him at his bedside. The following fieldnotes illustrate his combination of vulnerability, despair and stoicism and the importance of the kind patience of his therapist when he was experiencing the darkness of the liminal wilderness. She [physio] is letting him tell her his grievances about therapists coming when he wasn’t expecting it, and she is gently explaining the timetable system to him. She asks him about what he’d like to happen now, and he says ‘I will try’. ‘Great, let’s give it a go’, she says. ‘Shall we go to the gym and try some things in there?’ He’s extremely volatile and very bloody as his shaving cuts won’t stop bleeding and he keeps wiping blood onto his hands. It’s all on his pyjamas too. He has some new yellow trainers and weeps as the physio helps him to put them on. In the gym he does some walking and they talk about the exercises he has been given to do on his own. He demonstrates them and says he was told to do them twice a day but he did them all day long. He flicks between being eager to please, weeping, shouting and apologising. He is trying to focus on the whiteboard on the wall, where the lists of patients for each group are written up, but he has double vision. I go and fetch his glasses, and he acts like he’s in the opticians, covering one eye at a time and trying to read the words. His name is listed under circuit group with a question mark. He laughs. “Ha! I have a question mark! You’re not sure about me!”

Therapists tended to assume that my interest was in what they were doing clinically, but I was not casting a critical eye over their transfer techniques or use of equipment. In the above example, a different theoretical lens might lead me to notice different things. Reflecting on this scene through the filter of liminality offers a way of viewing the role the therapist was playing in supporting Raf through his dark moments. I notice Raf’s suffering and the importance of the therapists’ response and approach to him in that suffering. In Turner’s ethnographic account, Kafwana is the guide who can confer symbols of status upon the transitioning individual or group, teach them and lead them to their symbolic rebirth (Turner, 1969). This is by no means a perfect fit for the role of

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therapist, but there are parallels. Therapists (along with other members of the team) have privileged knowledge and experience that can help patients in their sudden and unsolicited life transition. They have power: to set goals and expectations, make significant decisions about patients’ lives, ascribe them functional levels and use these to direct others in the provision of their care. A therapist can be a benevolent torchbearer, appearing sometimes to cast light on the landscape ahead, providing encouragement and support. This is illustrated in the above example, but I frequently observed therapists making decisions without meaningful inclusion of patients. I saw patients as lacking agency, and I struggled with how to label this. I collated examples of interview and observational data under the heading of ‘passive patients’, but this did not seem right as patients were not choosing to be passive; they simply did not know what to do. Their strokes were unplanned, and they had no say over where they went to hospital or how many more hospitals they were transferred through on the journey home. Involvement in decisions was rarely of any depth or significance. As patient Brian said, ‘I think I’m resigned to the fact… I’m out of my depth here.’ I interviewed Mrs R, the wife of a patient who had been keen to participate in the study but became too unwell. When we sat at a small table in a therapy office, Dictaphone recording, she spent a large part of our time interviewing me, seizing the opportunity to ask pages of questions she had been accumulating. Challenging moments in ethnographic interviews are not uncommon, and they offer an opportunity for further reflexive analysis (Skinner, 2012). Whilst I did conduct such analysis after the event, in my mind in the moment I panicked about being a terrible ethnographer, feeling that the rules of research meant I should not answer her questions, but also conscious of the one-sidedness of asking her my questions and offering nothing in return. Ward staff had given Mrs R all the time they could, and here I was with seemingly endless unfilled time at my disposal. I cautiously answered what I could, feeling that this was the humane response as well as a fair trade. She, too, seemed lost and in the wilderness, having no choice but to trust that the professionals were doing what was best for her husband. She told me that she would have liked to be more involved in knowing what was going on and how professionals were making their decisions. We’re not going to be there and know when he goes in for therapy, when he goes out, what he thinks about it. Half the time he couldn’t talk anyway. So we had no choice but to –and after all, these people have learnt it all, this stuff. We don’t know anything about anything. Know about other things, don’t know about that…

Mrs R telephoned me months later, when my fieldwork was over. She had concerns about some of the approaches therapists were taking and wanted to discuss these with me. Again, I worried about the ethics of the situation and whether I was overstepping a boundary. With hindsight, I see that it was because of my position as both insider and outsider that she felt able to contact me. I knew who her husband was and had seen him on the ward, I had a background as a therapist but was distanced from this. She rightly perceived my uninvolved interest. The unique position of the ethnographer provides an opening. People perceive that they can speak freely to the ‘watcher’ who has been seeing what they have seen and also what they have not seen. Recalling

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my conversations with Mrs R through the lens of liminality I see that still she felt disorientated and lacking in agency, in the wilderness. Turner discussed the importance of comradeship and communitas to those going through periods of transition, and such comradeship was notably absent from my fieldwork observations (Turner, 1969). Patients invariably sat or lay solitarily in their curtained-off bed spaces, echoing the now well-known description of stroke patients ‘inactive and alone’ (Bernhardt et al., 2004). There were glimpses of rehabilitation practitioners making small but meaningful attempts to address the loss of agency experienced by stroke patients and to light the path ahead. Viewing the experiences of stroke unit patients as liminal and acknowledging the separation from their former lives and the dark disorientation of the wilderness may help to illuminate the role rehabilitation could play in guiding patients through this transitional phase. Ethnographers without a clinical background may feel less inclined to make a call to action, instead allowing the stories to speak for themselves. Having that background, being separated from it and listening to patients’ stories as an observer is a very particular position from which to glean new insights, and combining this with analysis of theory helps illuminate these further. I will reflect more on the conundrum of knowing one’s place as a clinician–ethnographer in the following section.

Doing Ethnography: Purpose and Belonging In transitioning from clinician to researcher, I tried to prepare for fieldwork, planning where I would situate myself on the participant–observer continuum (O’Reilly, 2009). I struggled to imagine how it was going to work. Without being a member of staff, where would I put my stuff? Where would I sit? Or stand? Would I follow individuals around like a sleuth in the shadows, or sit on a chair with a clipboard watching the world go by? And what would I wear? I dismissed the idea of wearing an OT uniform as I did not want patients and other staff to see me as a therapist. That was not my role. I had separated myself from my former identity and spent a year with a supervisor figuratively (and kindly) ‘beating the OT out’ of me in order to re-enter the world of rehabilitation with fresh eyes. Having moved through Benner’s stages of novice to expert in my clinical career (Benner, 1982), I found myself subverting that model and did not fit into it. I was a novice at doing ethnography, but in a field in which I had some expertise. Ethnographers seek to make the familiar strange, and the strange familiar, but returning to the familiar setting of a stroke unit it was me that seemed strange—not knowing where to fit or how to be. From early on in my transition from rehabilitation clinician to rehabilitation research student, I found the concept of liminality useful as a theoretical framework for my critical reflexivity. The liminality of ethnographers has been discussed before, based on the fact that we operate at the margins of groups, as both insiders and outsiders (Johnson in Robben and Sluka, 2007). Any rite of passage is seen to begin with a separation phase, during which the individual becomes detached from who they were before, including their place in the social structure.

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I had detached myself from my previous role, salary and status, and found myself tip-toeing into the environment I would formerly have buzzed around purposefully. My clinical work had always been fast paced, and I felt uneasy about my lack of function or contribution on the stroke units. I spent my fieldwork days loitering, observing and absorbing, shadowing, sitting, standing, watching and trying not to make any sort of impression by my presence. I followed Jeffrey and Troman’s (2004) example, ‘hanging around, soaking up every tiny detail’. It often felt awkward, and I worried a lot about being a burden or irritation, getting in the way of busy therapists and making them feel uncomfortable with my surveillance. I thought about Sartre and Goffman and their discussions regarding presentation of self (Goffman, 1959; Sartre, 1956). Sartre gave examples of the waiter, grocer, tailor and auctioneer, all dancing their roles with the inauthentic intention of convincing their clientele that those roles are who they are (Sartre, 1956). Goffman explored the performances we play on the social stage in order to manage others’ impressions of us (Goffman, 1959). My impossible endeavour was to present myself as neutral wallpaper, with no role other than to watch and learn. Philosophically debating the authenticity of my presentation of self as an ethnographic researcher could be the subject of another chapter. Here, my aim is to convey that it was an unnatural and cumbersome performance. In transitioning from clinician to researcher, I had removed myself from a position of obvious usefulness. I was not helping patients with their rehabilitation, and neither was I helping those that were helping them. As a clinical supervisor of other therapists in my previous life, I had talked about our tendency to enact the role of the ‘rescuers’ of Karpman’s drama triangle (Karpman, 1968). People who go into health care typically want to help others and make a difference (Barnet, 2007; Nicholls, 2013). Watching others do their best to help is a very different experience, and not one that offers a daily sense of reward or gratification. Occupational therapy has a history of identifying as a profession of ‘creative problem-solvers’ (Graham, 1983), but ethnographers are not there to solve immediate problems. In my liminal nothingness, I mourned a sense of usefulness and searched for purpose. An occupational therapist looked at me strangely one day, asking rhetorically how I was going to get anything worthwhile out of all my observations. In her view there nothing noteworthy to see or report on. ‘How are you going to get a PhD out of this?’ she said. This was a haunting question. Ethnographer Simon Coleman has written about the ‘crap question’, giving the example of a colleague who asked him ‘why are you studying such crap?’ regarding his study of a certain sect of Christians in Sweden, but noting ‘variants of pretty much the same question have been posed to me over the past quarter of a century’ (Coleman, 2015). I found myself discomforted by the version of the question I received. It felt like a challenge and tapped into my insecurity about the value of what I was doing. I had to trust that what I was doing was something, even if it felt like nothing. A note to myself in my phone from that time says, ‘find the story that illuminates the structure of society’, typed alone and without context. It became something I whispered into my mind when trying to find purpose in my work. ‘The structure of society’ sounds grand, but using a story to illuminate something hidden seemed

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possible and worthwhile. This also calls to mind Geertz’ (1973, p. 5) description that ‘man is an animal suspended in webs of significance he himself has spun… I take culture to be those webs, and the analysis of it to be therefore not an experimental science in search of law but an interpretive one in search of meaning.’ The strange tension for the ethnographer is of diving in and holding back, becoming immersed in the field in order to really get to know it, while keeping it sufficiently at arm’s length to retain a stranger’s perspective. A key characteristic of ethnography is the relationship between the emic (insider) and the etic (outsider) points of view (Geertz, 1983). The ethnographer holds a delicate balance between attending to the empathy that is founded on personal participation and restraining themselves to keep an observational distance (Clifford & Marcus, 1986). It is precisely this awkward positionality that allows us to see things with an interested otherness and to cast a new light on the everyday. We make the strange familiar and the familiar strange by watching, listening, questioning and inhabiting the world that we study. I was deliberately vague about my research in order not to influence what people said and did, and also because in truth I was absorbing what was going on around me with no distinct agenda. As a therapist, the stroke unit was a familiar field to me, and it was helpful having instant understanding of the jargon and acronyms used in meetings. My aim was to unpick and reveal what was going on in these settings, particularly within a specific time of transition for therapists. Their transition involved the implementation of a new policy and audit, the principles of which were that offering a benchmark (45 min of daily therapy) and auditing services against it would gradually work to improve care and reduce variation in the provision of therapy between services (Taylor et al., 2018). My position of Ph.D. student brought me privileged access to a number of groups that would have been closed to me previously, but accessing them did not mean I belonged in them, and here too I was an insider and outsider. In my Ph.D. office, I was based in a hub of influential stroke researchers, physicians and policy-makers. This enabled me to arrange meetings with people I saw as the national ‘big cheeses’: those leaders of the Stroke Programme who had set the 45 min guideline and launched the national audit that would monitor its implementation. I was invited into discussions amongst senior clinicians who were grappling with understanding and implementing the guidelines. Later, I was able to get to know and interview those staff doing the work ‘on the ground’ and the patients receiving their care. I interviewed therapy managers who oversaw stroke units amongst other wards and heard about how they perceived stroke services in comparison with others. Hearing from such a wide range of groups enabled me to put together pieces of a jigsaw I would perhaps not have even considered had I zoomed in on the stroke unit in isolation. I was struck by how open and welcoming all these different groups and individuals were to me, yet I did not fully belong in any of them. Mesman (2008) noted that the ethnographic field is not a stable world with distinct boundaries: ‘The dynamics within the local-interactional spaces create a complex process in which one gets entangled in multiple engagements, conflicting feelings of loyalty, and a multitude of positions.’ The marginality and ambiguity of my role and purpose were helpful. I was not seen as a practicing therapist when the ‘big

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cheeses’ were telling me what therapists were like, and I was discreet about my inside knowledge of the ‘big cheeses’ when therapists were talking about them. Therapists had been characterized as troublesome, humourless and obstructive. In turn, the therapists had a perception of the guideline setters and auditors as faceless, out of touch bureaucrats that did not really understand the way therapists or therapy worked. They were imagined to sit in far-away offices, picking through data on their computers and casting their judgements on things they did not understand. In one stroke unit, whilst putting away the chairs after a meeting to discuss the team’s audit data, I noted out loud that it was interesting that the national audit team had spotted some anomalies with this team’s data. One of the managers replied conspiratorially, ‘Well, I think they must have a lot of people working for them down there. If you ask them a question they get back to you in 10 min. So I think there is a lot of monitoring going on.’ I pictured the little office where I had met the tiny but dedicated audit team. I thought about the strange impressions these different groups had about each other and the distorted narrative that was woven regarding the origins of the guideline and monitoring of their work. ‘Betwixt and between’ groups I could see that the stereotyping on both sides was neither flattering nor accurate. As Lipsky put it, people could be taken at face value when they said they were ‘doing the best they can’ (Lipsky, 2010). The leaders and influencers had a pragmatic approach to the policy they set. They knew it was not perfect and were curious about its implementation. They were humans with good intentions, and members of the audit team were accessible and happy to help, but somehow and at some point, they were ascribed mythical form by those who were being monitored by them. Despite everybody’s good intentions, a ‘them and us’ attitude developed between these various groups. My position on the margins of these groups meant that I was cautious about influencing what anyone said to me or in front of me, so I generally tried to keep quiet and exercise diplomacy. This marginality was not unique to me, but is a feature of conducting ethnographic research. It was valuable to find out as much as I could about context, drivers and unintended consequences both within and beyond the stroke unit. Belonging conjures feelings of acceptance, but can also be associated with ownership and answerability. I was conscious that those who spoke to me might have been anticipating I would promote their message or agenda, and I questioned who or what I was working for. To continue not to belong was a solitary but vital endeavour. In reality, invisibility is a futile quest for the ethnographer, and it is naïve to deny any impact our presence in the field has on others (Mesman, 2008; O’Reilly, 2009). On one occasion, I was reminded of my conspicuousness in a multidisciplinary meeting, when the consultant warned the others to be careful what they said as they were ‘being watched’. In other encounters, I noticed how even asking a clarification question could prompt people to reconsider their decisions and change their course, so I trod with extra care. Stifling my natural impulses for commentary and questioning felt important, but was uncomfortable. I wrote a reflection about the unpleasant phenomenon that ‘feels a bit like being turned inside out, or being sucked in on

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myself. I am so careful to keep quiet, especially in meetings, that I feel like I’m turning myself mute.’ Paradoxically, as well as being quiet and cautious, it was important to be open. I noticed that the more natural I was with participants, the more this was reflected back at me by them. Interviews were the most comfortable part of the research process as I had a defined role in leading a conversation, able to ask questions and respond in a quiet, private space. Following the guidance of Grbich (1999), I referred to a topic guide in my formal interviews which set out broad questions derived from theory, previous research and intuition about ideas worthy of exploration, but allowed the conversation to flow naturally and take its own course. A particular strength of ethnography is that we can talk to participants about what we have noticed in observations, and how that might differ from what has been said, and we can explore these contradictions together (Geertz, 1983; Hammersley & Atkinson, 2007; Lambert & McKevitt, 2002). I could listen silently in meetings and follow questions up in interviews later. Some dilemmas regarding managing my boundaries as an ethnographer were described in the previous section, and it was important to be ethically mindful, use ‘gut feeling’ to resolve ethical dilemmas in the moment and practise reflexivity consistently (Finlay, 2002; Lipson, 1994; Pollock, 2012; Tinney, 2008). The peculiar position of the clinical ethnographer led to opening up and sharing of perspectives and stories that may otherwise have remained untold. Ethnography enabled a whole systems approach to understanding and unpicking what was going on in a complex field.

Stroke Units: Ambiguity, Complexity and Transition The 45 min guideline and audit was an endeavour of standardization, aiming to reduce variation in service provision and raise standards. With the new perspective of an informed outsider, it soon became evident to me that ‘therapy’ was an ambiguous concept, making measurement of it problematic. It was clear that stroke units themselves varied greatly, with significant differences in their perceived remit. There was alarming disparity in services available for patients in the community, and this had an impact on the discharge decisions made in the stroke units. The differences in the characteristics and ethos of each stroke unit were fundamental. They could all be considered liminal spaces, in that they were places of transition and limbo, but the extent to which rehabilitation was core business made a difference to the landscape of the wilderness. In one, rehabilitation was at the core. In another, that was considered an ‘old-fashioned model’, and the focus of therapy work was discharge planning (Taylor et al., 2018). I wondered at the mission of standardized implementation of a guideline based on minutes of therapy time, when hospitals had such different ideas of what that time should be used for. If therapists had a role in helping patients navigate through the transitional darkness to a better state of assimilation, this was not universally clear.

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Entering the field was a different and new experience in each of the three stroke units where I conducted my research. Each had its own personality as well as different physical attributes. I will describe these to illustrate the ambiguity in the purpose of the stroke unit and also to present an outsider–insider’s perspectives on these liminal spaces. In one, there was a constant buzz of activity and noise from the healthcare workers making their way around with trolleys and medications. As a patient put it, ‘sometimes in the mornings this place is like a market!’ In the background of this fast-paced flow of energy, patients who were not in their allocated slot of therapy time were sitting still and quiet in their high-backed chairs, or lying in bed. Those caught up in activity did not notice the inactivity, but hustled and bustled around it, calling to mind the light-trails left by speeding traffic in time-lapse footage. I sat on plinths watching exercise groups and sat in the kitchen while patients prepared toast, eggs and tea in breakfast group. I was offered freshly baked Brazilian biscuits on a proud patient’s way back from preparing them in the kitchen, a taste of home that he could share with staff and patients. I listened as patients in a therapy group gently chatted whilst making paint prints of the autumn leaves. I sat in the weekly bunfight that was timetabling, with therapists negotiating and gesturing like stockmarket brokers to fill their own and their patient’s timetables without clashes. I noticed the skill and expertise in the way an experienced physiotherapist used her hands on her patient’s bodies to facilitate movement. And I saw that therapists were busy with all these things all day, but patients were not. In contrast, the stroke unit of another hospital was not only a journey of lifts and corridors from the outside world, but also from the tiny kitchen that was used to check whether patients could make a hot drink before being discharged. The lack of therapy spaces here was a contentious issue. Therapy room had been removed to make way for more bed space, and accessible bathrooms were used as wheelchair stores. Those who could be discharged with intensive community therapy went home quickly, and those left behind were more unwell, many of them designated ‘not for therapy’ because their death was considered imminent. Another stroke unit was noticeably under-resourced. Essential equipment such as hoists and slings was sparse and rationed between patients. Walking through the corridor to the ward I looked at a tree through a shattered window, wondering what it might symbolize. Walls looked tired with peeling paint, and staff looked tired too. Therapists met twice a day to discuss who needed to be seen and how this would be managed, but they seemed to be forever fighting a losing battle against time. They felt all too aware that they were not meeting their patients’ rehabilitation needs and did their best on a daily basis without feeling this was good enough. The postcode lottery of community rehabilitation was a dominant feature here, as therapists’ clinical reasoning was influenced by the knowledge that the required therapy would be available only to those who lived in the lucky neighbourhoods. Decisions made about patients by the multidisciplinary teams were often complex and likely to have crucial, life-changing consequences. Liminality is supposed to carry a promise of better things, a transition out of the limbo of statelessness. For stroke unit patients, potential for improvement, or at least assimilation, is supposed to be maximized by skilled and supportive multidisciplinary teams. Too often these

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teams were focused on selecting the least bad option, in full knowledge that this was far from ideal. Patients, in their liminal state, could only await these decisions and hope they carried potential of a positive transition for them. Professionals involved took their responsibilities seriously and worked together to make decisions, but were often constrained by what they saw to be unalterable external factors. The following fieldnotes from a multidisciplinary team meeting exemplify the complex but restricted decision-making undertaken by stroke unit teams and highlight challenges relating to the transition beyond the stroke unit. Within the phases of liminality, we might expect this to be a transition from a lower status to a higher one, or perhaps from dependence to independence and rebuilding of an identity. Instead these stories show that for many, the limbo of statelessness was set to continue. It’s November, hats and scarves weather, but on the ward the heat is stifling. From 10am we are packed into the small meeting room with the heater blasting out from one side, the window wide open at the back, and an electric fan pushing hot air around on the other side. We sweat, fan ourselves, glow from red cheeks. And the meeting goes on and on. I drink my big bottle of warm water too early. The door is open for air so sometimes the face of a patient smiles past as they are wheeled down the corridor. At one point an enormous bee hums heavily in through the window and spreads mild panic as it lurches and swaggers towards hot bodies. Dr B says ‘shut the door – we can’t have it on the ward stinging a patient!’, so we seal ourselves in for two hours with the heat and the bee, until it buzzes off back out of the window. The lady in bed 4 is new since last week. She was thrombylised. She’s medically stable. Everyone reports concerns about her engagement, but Dr B explains she has a specific syndrome including a lack of responsiveness as a result of thalamic injury. He wants the therapists to report back on how she has been with them, to help gauge the level of her fluctuations. Physio says they have been hoisting her into a tilt-in-space chair. She was visiting from overseas when she had her stroke. Her son wants her to live with him but he is homeless. There have been debates back and forth with ‘Paying Patients’ who have concluded she has access to British Funds. Besides, she can’t fly. So the plan is to set her up for placement in a nursing home. Dr B is going to give her a new drug which he hopes will ‘wake her up’. Discharge date is set for a week tomorrow. Doesn’t give her much chance to wake up. She might wake up in a nursing home. The lady in bed 5 is cortically blind, fatigued, confused, anxious. OT says she really needs more assessment. The discharge date is tomorrow. Currently she needs assistance of two. But she lives in a borough where the community team won’t see people who need assistance of two. Ideally she would have more time and rehabilitation either in hospital or at home, but she will get neither. I think, in this atmosphere, no wonder the therapists don’t have time to find their feet and do much in the way of rehabilitation. Discharge is king. Patients here seem to be ‘just passing through’. Therapists are just trying to get to grips with them, but it doesn’t really matter what stage they are at because they’re going anyway.

Other decisions were matters of life and death centering around decisions such as ‘ethical feeding’, medical management and the euphemistic label ‘not for rehab’. These stories were very specific and individual, but they also illuminate a bigger picture. A stroke unit is not a defining term, and its purpose is ambiguous. A stroke patient is not a uniform concept, and the needs of individual patients are varied and complex. Stroke rehabilitation is not always available and is not always the aim of the team, and therapists are not pushed to provide it when the emphasis is on moving people off the stroke unit. The liminality of being a patient on a stroke unit carries the

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promise of improved function and independence, but if rehabilitation is not integral to the inpatient stay and community services are not adequate, this promise will not be fulfilled.

Conclusion In this chapter, I have exposed some features of the ethnographic research process, specifically regarding the experience of transitioning from clinician with some expertise in a field to novice ethnographer studying the same field from the perspective of an outsider. I have drawn on the concept of liminality, exposing some of my struggles with positionality but also showing how being on the margins (as outsider and insider) can be fruitful for gaining a broad, whole systems perspective. The question of positionality felt problematic, but also carried potential as I grappled with questions of purpose and belonging. The ‘in-betweenness’ of neither being in nor out, of not belonging and not having a clear use, carried possibilities for discovery. The presentation and severity of a stroke vary from one individual to another. All the patients I spoke to shared a story of their stroke as a moment in and out of time, when they were separated from their life as it had been up until that point and found themselves in a state of loss. A feature of liminality is that it carries potential for rebirth, and rehabilitation ideally should provide communitas, comradeship and guidance out of the limbo of statelessness. In my observations, stroke units were not routinely offering this, despite policy-makers, auditors, managers and multidisciplinary team members being passionate about doing their best to improve things for stroke patients. Therapists were well-meaning and busy. Policy-makers and target setters were well-meaning and reductive. Multidisciplinary teams worked together to consider shockingly complex and distressing situations and do the best they could in systems that did not support best practice. Patients and their carers lacked agency and information. Sometimes, highly skilled work took place that helped people. Sometimes, people showed kindness and compassion. Invariably people were dedicated and ethically mindful, even if they had different ideas about how their time should be invested. In concluding, I am again reminded of problems of identity and purpose. The aim of ethnography is not to offer solutions, but instead value is placed on building stories about the social world. Having a problem-solving, clinical background makes it difficult to leave the stories there without further comment or recommendations. I will resist this impulse, but end by reiterating that the threshold is a place of potential. It is not the darkness of a black hole, but the moon between phases. It is metamorphosis from one state of being to another, and as such, it carries the promise of the chrysalis. Policy-makers, funders and managers considering this will no doubt feel compelled to work to improve transitions between the stroke unit and beyond. That transition could be supported by excellent community therapy teams, equal in excellence from one neighbourhood to the next. Health and social care workers will remember that although there is no place like home, a stroke is a catastrophic

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separation from one’s former self, and the transition home should be handled with care. Anyone involved in rehabilitation can potentially have a role in supporting this transition, whether as healthcare workers, policy-makers, carers or friends.

References Barnet, M. (2007). What brings you here? An exploration of the unconscious motivations of those who choose to train and work as psychotherapists and counsellors. Psychodynamic Practice: Individuals, Groups and Organisations, 13(3), 257–274. Benner, P. (1982). From novice to expert. American Journal of Nursing, 82(3), 402–407. Bernhardt, J., Dewey, H., Thrift, A., & Donnan, G. (2004). Inactive and alone: Physical activity within the first 14 days of acute stroke unit care. Stroke, 35, 1005–1009. Clifford, J., & Marcus, G. (Eds.). (1986). Writing culture: The poetics and politics of ethnography. University of California Press. Coleman, C. (2015). Borderlands: Ethics, ethnography, and “repugnant” Christianity. HAU: Journal of Ethnographic Theory, 5(2), 275–300 Dworzynski, K., Ritchie, G., & Playford, D. (2015). Stroke rehabilitation: Long-term rehabilitation after stroke. Clinical Medicine, 15(5), 461–464. Ellis-Hill, C., Payne, S., & Ward, C. (2008). Using stroke to explore the life thread model: An alternative approach to understanding rehabilitation following an acquired disability. Disability and Rehabilitation, 30(2), 150–159. Finlay, L. (2002). Negotiating the swamp: The opportunity and challenge of reflexivity in research practice. Qualitative Research, 2(2), 209–230. Graham, J. (1983). Occupational therapy: Is it the creative problem solving process which the profession claims? Australian Occupational Therapy Journal, 30, 89–102. Geertz, C. (1973). Thick description: Toward an interpretive theory of culture. In C. Geertz (Ed.), The interpretation of cultures: Selected essays (pp. 3–30). Basic Books. Geertz, C. (1983). Local knowledge. Fontana Press. Goffman, E. (1959). The presentation of self in everyday life. Doubleday Anchor. Grbich, C. (1999). Qualitative research in healthcare: An introduction. Sage. Hammersley, M., & Atkinson, P. (2007). Ethnography: Principles in practice. Routledge. Intercollegiate Stroke Working Party (ISWP). (2012). National clinical guidelines for stroke (4th ed.). Royal College of Physicians. Jeffrey, B., & Troman, G. (2004). Time for ethnography. British Educational Research Journal, 30(4), 535–548. Johnson, N. (2007). Sex, color and rites of passage in ethnographic research. In A. Robben & J. Sluka (Eds.), Ethnographic fieldwork: An anthropological reader. Blackwell. Karpman, S. (1968). Fairy tales and script drama analysis. Transactional Analysis Bulletin, 7(26), 39–43. Lambert, H., & McKevitt, C. (2002). Anthropology in health research: From qualitative methods to multidisciplinarity. British Medical Journal, 325, 210–213. Lipsky, M. (2010). Street-level bureaucracy: Dilemmas of the individual in public services. Russell Sage. Lipson, J. (1994). Ethical issues in ethnography. In J. Morse (Ed.), Critical issues in qualitative research methods (pp. 333–355). Sage. Madden, R. (2010). Being ethnographic: A guide to the theory and practice of ethnography. Sage. Mesman, J. (2008). Disturbing observations as a basis for collaborative research. Science as Culture, 16(3), 281–295.

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Nicholls, L. (2013). The ‘Therapeutic Use of Self’ in occupational therapy. In L. Nicholls, J. Cunningham-Piergrossi, C. de Sena Gibertoni, & M. Daniel (Eds.), Psychoanalytic thinking in occupational therapy: Symbolic, relational and transformative (1st ed). Wiley. O’Reilly, K. (2009). Key concepts in ethnography. Sage. Pollock, K. (2012). Procedure versus process: Ethical paradigms and the conduct of qualitative research. BMC Medical Ethics, 13, 25. Sartre, J. (1956). Being and nothingness: An essay of phenomenological ontology. Philosophical Library. Skinner, J. (2012). The interview: An ethnographic approach. Berg. Taylor, E., McKevitt, C., & Jones, F. (2015). Factors shaping the delivery of acute inpatient stroke therapy: A narrative synthesis. Journal of Rehabilitation Medicine, 47(2), 107–119. Taylor, E., Jones, F., & McKevitt, C. (2018). How is the audit of therapy intensity influencing rehabilitation in inpatient stroke units in the UK? An ethnographic study. BMJ Open, 14;8(12), e023676. Tinney, J. (2008). Negotiating boundaries and roles: Challenges faced by the nursing home ethnographer. Journal of Contemporary Ethnography, 37(2), 202–225. Turner, V. (1969). The ritual process. structure and anti-structure. Aldine Transaction. Turner, V. (1987). Betwixt and between: The liminal period in rites of passage. In L. Mahdi, M. Little, & S. Foster (Eds.), Betwixt & between: Patterns of masculine and feminine initiation. Open Court.

Chapter 12

Time for Talk: The Work of Reflexivity in Developing Empirical Understanding of Speech and Language Therapist and Nursing Interaction on Stroke Wards Rachel Barnard Abstract This chapter explores the contribution made by reflexive work to ethnographic findings with respect to time for interaction between speech and language therapists and nurses. The study explored information sharing between professionals from these disciplines on three stroke units across three hospitals in the UK. The researcher was a member of one of these professions (speech and language therapy), making reflexivity a particularly important mechanism for approaching the perspectives of both disciplines in as egalitarian a way as possible. The ethnography provided an explanation for how the temporal-spatial context of stroke unit care influenced the nature of the information that was shared, with a privileging effect on information that was quick to share and relatively easy to use. Speech and language therapists needed to manage their information-sharing needs with nurses in a context where they perceived interaction to be interruptive to nursing work. The process of doing the research involved asking nurses to divert attention from patient care to participate in research activities, providing insights about time and space that mirrored aspects of empirical findings. Reflexive work thus served both as mechanism for accounting for subjectivities and as an additional lens for understanding the findings. Keywords Time · Reflexivity · Communication · Interprofessional

Introduction This chapter explores the relationship between findings from an ethnographic study about speech and language therapist (SLT) and nurse interaction on UK stroke units and insights from reflexive work relating to research processes. SLTs in the UK are the key professionals responsible for assessing and managing stroke-associated swallowing and communication disorders. In executing their roles, they need to work with nurses, who share responsibility for these domains, in the context of R. Barnard (B) Division of Language and Communication Science, School of Health Sciences, City, University of London, London, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_12

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providing care for the whole patient. The overall finding of the study was that time and space influenced the information-sharing behaviours of SLTs and nurses (Barnard et al., 2021). The temporal-spatial context created the conditions through which information about swallowing difficulties was privileged over information about communication difficulties, and relationships between SLTs and nurses could be hard to build. SLTs perceived interaction to be interruptive to nursing work leading them to prioritise information that could be conveyed in small windows in time, and that was understood by both disciplines as useful and important for patient safety. Findings contributed to research arguing for increased attention to patients’ communication needs in acute care (Carragher et al., 2020; Foster et al., 2015, 2016) by indicating that the prominence of swallowing may be being sustained by interactional factors. The published account of the study carefully details the empirical bases for the findings (Barnard et al., 2021), but only lightly reveals the intricate relationship between the processes and the product of the research. Findings were reinforced by striking parallels between ongoing reflections on how research activities such as seeking consent, setting up interviews and sharing findings, mirrored observed differences between the two professions. My position as a SLT-turned researcher shaped these reflections. The process of observing SLTs enter in and out of spaces predominantly occupied by nurses caused me to look on my own profession anew and reflect on the taken for granted ways in which I also had moved through wards as a SLT when working as a clinician. Jenkins asks: “how much does adopting the researcher’s stance towards one’s own social world change one’s place and position within and towards that world?” (Jenkins, 2002:56). I was conscious of my researcher responsibility to carefully capture the phenomena I was studying, yet my world was intricately connected, not only through professional history but also because undertaking the tasks of research reinforced differences in how the two professions navigated time and space. This chapter explores how these insights added depth to the knowledge generated. The importance of reflexivity is well accepted in ethnographic work, so much so that ethnographers’ attention to the relationship between the observer and the observed has been described as “an obsessive concern” (Bloor, 2001:179). Ethnographers aim to create a credible account through careful description and analysis of what is seen and heard, whilst also noting and reflecting on how identities and presuppositions influence where they direct attention (Hammersley & Atkinson, 2019). Reflexivity can be defined as “the process of a continual internal dialogue and critical self-evaluation of researchers’ positionality, as well as active acknowledgement and explicit recognition that this may affect the research process and outcome” (Berger, 2015:220). Whilst there is wide agreement that it is not possible or desirable for qualitative researchers to be detached from the social worlds they study (Coffey, 1999), there is no consensus as to how reflexive work should be carried out or represented (Dean, 2017). Coffey argues for more attention to how the “self” of the researcher “engages with the personalities, histories and subjectivities of others present in the field” (Coffey, 1999:57), and it is acknowledged that researcher position and biography impact on every stage of the study: choice of topic, access to the setting, data collection, data analysis and writing (Hammersley & Atkinson, 2019).

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However, researchers have been cautioned that excessive introspection risks accusations of naval gazing for self-indulgent as opposed to epistemic purposes (Bourdieu & Wacquant, 1992), that is for purposes relating to the advancement of knowledge. Dean suggests that Bourdieu’s attempt to separate epistemic from personal reflexivity is artificial and that both are required to create an honest account of how research findings have been constructed (Dean, 2017). The researcher is a critical social actor, who needs to create relationships in the field for effective fieldwork, and it is this criticality, that is key when reflexivity is used to enhance the credibility of ethnographic texts (Coffey, 1999; Dean, 2017). For ethnographers who are also clinicians, it is likely that interpretations will be filtered through their professional history, heightening the importance of examining the impact of their participation in the setting on interpretations of the phenomena of interest, as well as its effect on them as researchers (Allen, 2004). In this chapter, I draw on extracts from reflexive diary entries to demonstrate how insights from research processes were put to work in substantiating findings. By making reflexive work transparent, readers can judge how claims to knowledge have been derived, enhancing rigour (Dean, 2017). I will discuss how the persistent discomfort I experienced due to my fluctuating position between SLT and nursing worlds heightened my appreciation of differences between them. This will be followed by an explanation of the discordance observed between SLT and nursing experiences of time, before illustrating how specific research processes added insights to findings about the time available for SLTs and nurses to talk about patients.

Method The study on which this chapter is based involved 40 weeks of fieldwork across three inner city stroke units in the UK. Data collected included fieldnotes from over 350 h of participant observation and interviews with 43 members of SLT and nursing staff. Details about participants, data collection methods and analysis and ethical considerations are reported in full elsewhere (Barnard et al., 2021). This chapter is based on reflexive diary entries which were written whilst typing up fieldnotes at the end of each day. Reflections captured information pertinent to emerging interpretations as well as challenges relating to research processes, such as recruitment and field relationships. Reflections will be discussed in the context of published findings (Barnard et al., 2021).

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Finding New Meaning About Interprofessional Practice Through Researcher Discomfort Work on stroke wards is centred on the premise that specialist professionals working in coordinated ways will improve patient outcomes (Langhorne & Ramachandra, 2020). Previous studies of interprofessional practice on hospital wards have revealed some of the barriers professionals face in marrying different roles and priorities to develop working relationships and accomplish common goals for patient care. Such studies reveal that communication across professional groups can be challenged by unequal access to information through formal and informal routes, that roles are not always valued, and that disciplines differ in the amount of time they are present on wards (Barnard et al., 2020). The focus of the current study on just two disciplines, rather than the team as a whole, made it possible to apply focussed attention to the mechanisms through which interaction occurred. In common with previously reported practitioner research on hospital wards, my membership of one of these disciplines and experience of stroke care conveyed benefits as well as costs (Allen, 2004; Jacoby, 2017; Wind, 2008). Benefits included access to the field, easy acceptance amongst the SLTs and conversance with the language of stroke care. The primary cost was that my aim to cast an egalitarian eye on both disciplines brought ethnographer concerns with familiarity and distance into sharp and continuous focus. I benefitted from the comfort of being amongst members of my own profession but needed to also create some distance to see SLT practice with more curiosity. It was important to increase familiarity with the nurses to understand their world and gain their trust, but without over-affiliating to the extent that I lost sight of SLT perspective. In practise, practitioner-ethnographers tend to slide back and forth along a continuum from outsider to insider status throughout the duration of a study (Allen, 2004; Jacoby, 2017; Wind, 2008). Jacoby, a nurse-ethnographer, reports on the insights she derived from deviating from the outsider “visitor” role she had ascribed herself, when she felt compelled to draw on her insider skills to offer comfort to a patient in distress when others were not providing this. She felt that had she been present in her previous clinical role she might not have noted the significance of this episode of missed care and considered it important to incorporate such reflexive insights within her interpretations. Jacoby’s is one example amongst many that indicate that occupying the idealised middle ground, where researchers are judged to be best placed to balance familiarity with analytic distance (Burns et al., 2012), may be unrealistic for practitioner-researchers (Wind, 2008). My equal interest in two professional groups heightened my sense of otherness. I obsessed about the lenses through which I observed and through which I imagined others viewed me, and it was important to reflect on how my travels between familiarity and distance were informing my findings (Allen, 2004; Jacoby, 2017). The rate and speed with which I moved between SLT and nursing worlds led me towards a state of “permanent sociological vigilance” that enabled me to notice things that may not otherwise have drawn my attention, had I observed from the perspective of just one of these professions (Bourdieu & Wacquant, 1992:209).

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Bourdieu’s concept of the habitus is helpful for understanding how the person I was when I entered the field was subtly altered through the experience of doing fieldwork and how this influenced interpretations of my own profession in interaction with another. Habitus “designates the system of durable and transposable dispositions through which we perceive, judge and act in the world” (Wacquant, 2008:267). Dispositions are ways of being (thinking, talking, moving) that are unique to each individual, acquired from childhood and built upon with new social experiences (Jenkins, 2002). Social and professional experiences are layered onto the habitus creating a durable structure; it can be added to, but conservatively, in thin “onion like” layers (Dean, 2017). SLTs and nurses had shared experience of working on stroke wards yet had quite different temporal-spatial experiences of the ward as a field of work, which may have kept their experiences professionally distinct. The unique habitus of each of the SLTs and nurses (and my own) would have been layered with their individual socio-economic biographies and a lifetime of personal, educational and work experiences and interests. As a SLT, experienced in working on neurology wards, I had much in common with the SLTs and took it for granted that shared training and experience would ease relationships with them. I mostly felt at ease with the SLTs, like a “fish in water” (Bourdieu & Wacquant, 1992:127). However, I knew I would have to jump out of the water in order to develop field relationships with the nurses. I needed to learn the names of a daily changing body of staff and find a point of connection with them as people. Attempts by individuals to fit into unfamiliar social settings can heighten awareness of dispositions that usually operate at a more taken for granted, unconscious level (Reay, 2010). Reay explains the potentially transformative effect of exposure to a new field on the habitus through exploration of how working-class students adapt when entering elite universities. She argues for spending time analysing these points of “rupture”, viewing them as powerful places in which pre-existing dispositions are questioned (Reay, 2010). Being in spaces occupied by nurses on the ward was familiar to me from prior clinical experience. However, I was used to moving in and out of these areas, returning to therapist-dominated spaces once I had fulfilled specific patient-related purposes. As a researcher, my compulsion to fit in with the nurses meant often staying put, despite, feeling far more comfortable when moving about the ward with the SLTs. Jenkins argues that “most people, most of the time, take themselves and their social world for granted; they do not think about it because they do not have to” (Jenkins, 1992:70). Sticking with the discomfort created a rupture in my habituated ways of seeing and being (Reay, 2010) that led me to question the practices of my own profession. For example when viewed from the position of nurses’ busyness, it was hard to see how brief pieces of advice from SLTs about supporting patients’ communication could be accommodated. The experience of staying on the ward and observing others doing clinical work was very unsettling. There are few participant roles available for ward-based ethnographers, who can appear idle as professional activity whirls around them (Wind, 2008). Other ethnographers who are also clinicians have taken on clinical roles in the field, sometimes for the purpose of gaining first-hand knowledge of the researched phenomena (Clarke, 2009), and also as a response to feelings of isolation that can be

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generated by observing, rather than participating (Allen, 2004). Both purposes were attractive to me; however, my desire to be acceptable to two separate professions presented particular challenges. In the early days, I offered to assist the SLTs by scribing for them during language assessments but quickly realised that walking out together from behind the curtains reinforced my association with them and led to an exhausting push to re-affiliate with the nurses. Whilst over-affiliating is seen as something to be guarded against in ethnographic research (Burns et al., 2012), my in-between position made it hard to truly ally with anyone. Without a clinical role, it was difficult to feel that I had a legitimate reason to be hovering in predominantly nursing spaces. Diary entries in the first days of fieldwork on each new ward reveal deep unease and an overwhelming urge to escape. I found the experience as uncomfortable as I had been expecting. It is very difficult being on a ward without a function. I found myself writing quite noticeably in my pad because standing there doing nothing was too weird, it was a feeling that intensified rather than diminished. The question is do I ride the discomfort or is there something I can do to feel a bit less of an outsider?

I settled on the role of acceptable, marginal member (Hammersley & Atkinson, 2019), seeking acceptability by taking opportunities to be helpful whenever possible, such as by answering the phone. However, this could also create discomfort and mirrored challenges that I was observing in SLT-nurse interaction. The following extract illustrates that whilst stopping a phone ringing was immediately helpful, it was difficult to take action without some level of relationship with the nurses, at the very least knowing their names. Acting on the call required me to find a nurse and interrupt what they were doing, adding new insight into what could influence a SLT to keep walking rather than take the more collegial act of answering the phone. I am often reluctant to pick up the phone, because I know I will not be able to answer what is asked, and what I end up having to do is go and take a nurse away from their task to respond to the call (…). It is very hard to just leave it ringing, and by picking it up, I am helping out the nurse in the bay closest to the phone (…). There is no culture of taking messages, and it requires an immediate resolution of what is being asked. However, today, I know most of the nurses on the shift by name, so I feel ok with going and getting people.

Finding common ground with nurses required sustained effort and often centred more on what we had in common in our personal lives than shared experience as healthcare professionals. Many of the nurses were close to me in age and life stage, opening up a route for fostering relationships. Moments of connection with nurses felt earned and had a powerful effect on me personally. I brought in cakes this week, and this combined with the calmer ward environment made for a much more social and enjoyable time on the ward. Several of the nursing staff initiated communication with me, and for the first time, I felt at ease on the ward.

The advantage of adopting a more marginal position rather than taking on a clinical role was that I remained sufficiently distant to be curious about both the familiar and the strange (Hammersley & Atkinson, 2019), and on the whole, participants remained alert to my position as a researcher. Nevertheless, being marginal meant that I never

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fully relaxed despite gradually becoming more at ease as familiarity increased. I felt over stimulated and commonly had a headache as I left the ward. Are these headaches related to the stresses involved in the unresolvable discomfort of sitting between two cultures? I feel broadly comfortable on the ward now, but unlike other ethnographies, I can never actually immerse myself in a culture because I have to hop between two, and is it actually methodologically possible?

Observing nurses as they worked gave me an understanding of their experience that brought me closer to them. I became aware that my identity as a clinician with a strong interest in interprofessional practice had been built on much stronger connections with other therapists than nurses. I began to worry that my strengthening desire to understand nursing risked me privileging their understandings over those of the SLTs (Bloor, 2001). However, the following extract written at the end of fieldwork on one of the wards reveals that despite my efforts, I remained most at ease with other SLTs and therapists. The nurses now know me, and I enjoy their easy banter, but I was never as easy with them as I was with the therapists. Knowing them and being known by them gave me a real buzz. I have rarely achieved a similar closeness with the majority of the nurses I have worked with as a clinician.

Bourdieu suggests that researchers “play the game whilst waiting to leave it” (Bourdieu, 1990:77). Thus, although new experiences led me to feel that my habitus was undergoing some change, it was possible that on leaving the field, I would return to more habituated ways of understanding SLT practice in relation to nurses. My reflexive diary was a critical tool for holding onto what the experience of conducting the research was telling me about SLT-nurse practice, in particular the impact of the temporal-spatial context on interaction.

Discordant Time Understanding how various people in a field of study experience temporality is important for appreciation of how social life is ordered (Bourdieu, 1990). It is taken for granted that the work of professionals on hospital wards is constrained by time. However, emphasis on lack of time misses nuances in how professionals navigate around it. Time is also a resource (Jenkins, 2002). In my ethnographer role, having time to observe instead of do gave me new insights into the differing dispositions of SLTs and nurses towards time that were not available to me when I worked as a clinician. I found myself preoccupied with time, both empirically (how SLTs and nurses used the windows of time available for interaction and how nurses worked around SLTs’ intermittent presence on wards) and for the purposes of completing the study (the impact of nurses’ lack of time on participation in my research). SLTs and nurses differed in their relationship to the ward as a field of work, with the temporal-spatial experience of SLTs being more similar to that of other therapists than nursing staff. There was a constant nursing presence on the ward, and nursing

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staff remained proximal to patients, whereas SLTs were present intermittently and could operate in spaces away from the bedside (Barnard et al., 2021). Nurses and SLTs working full time were contracted to work the same number of hours. For most nurses, these hours were covered in three long shifts across the seven-day week, days and nights. SLTs worked a shorter clinical day, Monday to Friday (with rotating four-hour cover on Saturdays on one ward). There were thus long periods of time when there was no SLT presence on the wards. In an attempt to experience the ward through nursing perspective, I covered a full nursing shift. This gave me a sense of what it was like to be at work for 12 hours. The experience also helped me appreciate how the shorter working day of the SLTs could be experienced by nurses seeking resolution to an immediate concern. I really noticed it when the nurse came into the office looking for SLT at about five and she said she was about to go home. It is not that the therapists are not also spent, they do the same hours over a longer week, just that it marks a difference between them.

I found being present for a full day physically tiring. Experiencing time in this way gave me a stronger sense of nurses’ temporal experience, demonstrating the importance of bodily, as compared to intellectual experience to my developing understanding of nursing practice: “what is ‘learned by the body’ is not something that one has, like knowledge that can be brandished, but something that one is” (Bourdieu, 1990:73). This has relevance when considering the implications of the research for practice. For example SLTs may better appreciate the impact of the long nursing day by experiencing a full nursing shift, rather than reading about it. The differing temporal-spatial experience of SLTs and nurses was further illustrated during observations of the first part of the morning. Nurses started the morning shift with handover around 0730 and began work with patients half an hour to 45 min later. The next two to three hours were intensely busy as they provided breakfast, washed patients and completed medication rounds. On one of the wards (hyper-acute stroke unit), SLTs were located on the ward and often began work with patients by 0900. However, on the other two (stroke rehabilitation units), the start of SLT clinical activity tended to occur towards the end of the nurses’ busy period, coinciding with commencement of nursing breaks. I learnt how relentless time was for the nurses and noticed the discordance between SLTs’ eagerness to get started and nurses’ fatigue following the heavy physical work of the morning. I also recognised in the SLTs my own previous feelings of mild irritation when on entering the ward, nurses were beginning their breaks and unavailable to talk, yet I now understood how needed that break was. Temporality was strongly illuminated through my dual experience; sometimes, I entered the ward with SLTs; on other occasions, I had been positioned there for quite some time as the SLTs entered. I do not think I really understood the importance of breaks for the nurses when I was working as a SLT; the nurses today were full on from 8-12 (in the morning) doing heavy work with patients, and only two out of four of them managed to get a break. I think it is really difficult for others who arrive on the ward and perform less manual roles to appreciate the unrelenting nature of the work, and it is in this context that the SLT is asking for time from the nurses.

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A further illustration of disciplinary differences in the experience of time relates to an observation during a period on one of the wards in which there were few new patient admissions. The number of nurses on a particular shift was usually reduced when patient numbers were lower, whereas therapist numbers were fixed. The SLTs took advantage of their lighter patient load to complete projects and catch up with paperwork. I experienced the therapy office as more relaxed during this time. The differences between the two groups were starkly apparent when the nurse in charge was reprimanded by the visiting matron for not notifying her about the empty beds. Prior to this, I had been observing two nurses and an assistant struggling to work with one patient, and it was evident that despite the reduced number of patients, the nurses were as busy as ever. My unique position moving between these two worlds caused me to be highly attuned to this lack of parity. Whilst rationally I could see the financial sense in matching nursing numbers to patient numbers, I experienced a visceral reaction of unfairness that is likely to have been less intense had I been observing just one professional group.

Time to Participate in Research A key finding from the research was that the temporal-spatial context favoured fast, functional exchanges of immediately usable information for keeping patients safe from physical harm, and this was a better fit with information about swallowing than communication. SLTs perceived interaction to be disturbing to nursing work and the need to convey information in brief windows in nurses’ time influenced what they talked about (Barnard et al., 2021). The perception that interaction was disturbing was mirrored in my experiences of recruiting and interviewing participants and in sharing findings.

Recruitment On all the studied wards, recruitment of the SLTs to the study was fairly straightforward. I was offered time in meetings prior to commencing to explain the study, I gave them information sheets to read, and they signed a consent form at the start of the fieldwork. The process with the nurses was much more cumbersome. There was no similar forum in which the entire nursing body routinely came together; hence, although I presented at multidisciplinary team meetings prior to commencing and nurse leads emailed their staff, most nurses were unaware of the study until fieldwork began. I explained the study and distributed information sheets repeatedly at nursing handovers, but these were time-pressured occasions with very little time for active engagement. The process of gaining nursing consent took several weeks on each new ward. Some of these difficulties could be attributed to being an outsider to nursing; however, they also relate to nurses’ challenges in giving time to research processes

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(Ledger, 2010) and resonated with my prior experience of seeking nurse attention as a SLT. I spent quite a lot of time today loitering on the ward, trying to get a nurse to give me a couple of minutes, so she could sign the consent form. I felt very much how I used to feel as a SLT trying to get the attention of nursing staff. They are always doing something behind curtains or clearly in the middle of something as they go between the utilities. I used to feel that what I wanted to discuss with them would be low on their list of priorities (unless it related to the immediate of yes or no to whether the patient could swallow). At least then, my query related to something that could be in our mutual interest to resolve, now what I want from them, brings no benefit to them whatsoever.

The above extract indicates how presuppositions about nursing priorities were brought into focus through writing my reflexive diary. Reflections served as a reminder that I would need to ask questions that might appear obvious, as it was likely that knowledge considered to be implicit and shared would not be offered (Berger, 2015). This meant probing SLTs and nurses for their perceptions of information they wanted to hear from each other, rather than accepting taken for granted understanding about the prominence of swallowing over communication information. Recruiting nurses required social exchange and trust building as I worked to build my social capital. This was a much slower process than I had expected, as shift working meant that it could take weeks to meet all the nursing staff. Gestures like bringing in biscuits and cakes certainly helped. I also needed to work within time frames that suited nurses’ priorities for patient care. This involved the same kind of waiting for appropriate moments to interact that I observed with SLTs as they sought to gain nurses’ attention for information sharing. It is very rare for any of the nurses to have actually read the information sheet, and today, I explain that I will come round to people and discuss it individually. In practise, this is often difficult to do, but certainly easier when they have seen me a few times. I manage to consent two nurses, one who initially seemed a bit distant (I asked her if she had a minute and she said “can you see I’m on my own”). I realised then that she had no assistant in the bay. When she was free, she was actually very enthusiastic.

New appreciation of nursing perspective helped me understand that what could be perceived as an unfriendly response might simply reflect bad timing. The work involved in building relationships with nurses as a researcher resonated with the finding that SLTs considered relationships with nurses to be weaker than those they had with other therapists and the indication that this may have its origins in differences in the extent to which they came together in space and time.

Interviews The process of arranging and conducting interviews reflected differences in the capacity of the two disciplines to schedule time away from the ward. Nurses were more constrained by time than SLTs, who would respond to a request for an interview by opening their diaries and scheduling an appointment within the working day. Shift working patterns and their need to remain responsive to patients oriented

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nurses towards the “here and now” of the current shift. On each new ward, my diary is replete with entries during the first weeks of fieldwork worrying that I will be unable to get enough interviews with nurses, and on each, there tended to be a snowball effect towards the end of the fieldwork. I gained a reputation for keeping to a promised half an hour for interviews, and this encouraged other nurses to spare time. The cost was that interviews with nurses were shorter than those with SLTs. Some of the nurses offered interviews on their days off, preferring that to taking time away from patients. In contrast, all SLTs were interviewed during work hours. When I asked a charge nurse for advice for when to organise interviews, it was evident that there was no reliably optimal time. (He) suggested catching people at their breaks, I expressed that I would prefer not to take up their breaks, and he suggested that the best way then would be to formally schedule people in on a day when staffing is looking good. I said I could come in at night, but he felt that it was not until midnight that things quietened down.

Nurses operated in the immediate. When I asked them for an interview, they tended to assume I meant now; hence, most interviews occurred at opportune moments fitted around patient care. This had implications for the research as these interviews were more time pressured and, on occasion, interrupted, as nurses were called back to deal with a ward emergency. When nurses attempted to schedule an interview for a specific time, their capacity to meet the appointment was closely linked to their need to remain responsive to the demands of ward. In the following extract, I had gone in on a Sunday to secure interviews because I had been advised that this would be quieter. One nurse agreed to an interview but was currently dealing with a patient with behavioural issues that required his attention. He suggested that I try again at three o’clock when everyone had taken their lunch break. I returned at three, and they all looked at me in a kind of shock. The ward had become more difficult. Now, two patients were taking up a lot of time, and security had had to be called. He suggested that I come back at five. When I returned, he was just taking his break. It had been a very difficult shift, and there was no possibility of an interview as new patients had now arrived and needed to be admitted in preparation for Monday when everyone was back in.

This whole episode had involved several hours going back and forth to the hospital. My research on this ward was complete, but for these interviews, so I spent the waiting time in cafes. This level of accommodation of nursing priorities was much higher than would be feasible in a clinical context. These examples matched field observations of SLT and nurse experience of time and space. SLTs had capacity to be away from the ward, coming and going intermittently. In contrast, directcaregiving nurses were often tied to the ward and the needs of their patients. My experiences of trying to hold the attention of nurses for the purpose of fulfilling research roles resonated with the interactive effort SLTs needed to invest in order to share information. SLTs made judgements of nurse capacity when determining what information to share, with swallowing information being considered more worthy of the effort than communication information (Barnard et al., 2021).

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As a SLT asking questions of nurses, it was evident that I was situated by professional role. This can be illustrated by an occurrence a few days after I had interviewed one of the nurses. During the interview, I had asked questions to understand more about why nurses rarely discussed patients’ communication difficulties with SLTs, and the process of being interviewed had alerted the participant to her tendency to neglect communication needs. This appeared to influence subsequent behaviour when during nursing handover, she gave an unusually inclusive account of a patients’ communication. I understood this as reactivity because she ended with “and that concludes my research” (meaning handover). Everyone laughed and looked my way. I did not view this as undermining the validity of the research, however, as it added depth to emerging findings about inattention to communication. The incident illustrated that amongst their busyness, nurses could “forget” the communication needs of patients. However, of potential value to application of the findings is that it also indicated that they could be supported to remember.

Time to Hear Findings On completing fieldwork in each of the wards, I presented preliminary findings to SLTs and nurses to hear their perspectives. The SLTs offered me an hour to present my findings, and they engaged in animated discussion. In order to catch a large number of nurses, I was constrained to ten to fifteen minutes tagged onto times when nurses came together to hear about patients; handover or safety huddles. This required me to condense findings and made it impossible to have the kind of expansive discussion that had been possible with the SLTs. The limited time nurses had available to engage with the emerging findings of the research was mirrored in their infrequent attendance at the weekly scheduled interprofessional teaching sessions that were offered on two of the wards. They are unable to plan their day in the way that therapists are able to and even with the will to do so, they are at the mercy of events on the ward. In this context, it is hard to see how nurses can possibly match the level of in-service interprofessional training that the therapists enjoy. My initial plan had been to run workshops for the staff to share the findings of the study, and I realise that this may have been naïve.

Nurses’ lack of time and their disposition towards getting things done in the here and now resonated strongly with the SLTs who attended the feedback presentations. SLTs at one of the events suggested that SLTs could increase temporal-spatial alignment by conducting work relating to patients’ communication needs whilst also assisting nurses with personal care tasks. I shared this suggestion at a feedback session for nurses, and they welcomed the idea but found it hard to place within their conceptualisation of the SLT role. Bourdieu suggested that through the habitus, “the most improbable practices are excluded as unthinkable” (Bourdieu, 1990:54). This indicates complexities in changing habituated ways of acting. Whilst the SLTs could envisage bringing more of their work into nursing space, changing practice would require both professions to adopt and embed new ways of conceiving the interdependency of their roles on stroke units.

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Conclusion This chapter has demonstrated how reflexive work influenced emerging interpretations about how SLTs and nurses shared information on stroke units. Fastidious recording of reflexive notes helped me reflect on the interaction between subjectivities and interpretations of observed practice. My experiences of moving in and out of SLT and nursing spaces, of feeling uncomfortable and of research processes heightened appreciation of temporal-spatial differences between the disciplines. The published account of this research presents measured interpretations of SLT and nursing practice based on careful analysis of observations and participant perspectives (Barnard et al., 2021). However, as a practitioner-researcher, I was also invested in the field. Through discussion of the habitus, I have shown that trying to fit in with two professional groups created some rupture to my habituated ways of seeing my own profession in interaction with the nursing profession. Attention to the researcher, the research processes and the research outputs have revealed the intricate relationship between them and demonstrated how this served to strengthen understanding of SLT-nurse practice. The process of conducting ethnographic research on busy stroke wards was intense, yet highly illuminating and rewarding. Reflexive diary writing is well established in ethnography, and I would urge novice ethnographers to be conscientious in contemporaneously recording process-related issues as well as analytic insights. During fieldwork, writing about my own experiences of conducting the research felt more personally than empirically useful; however, it became apparent that as well as helping me work through research challenges, these reflections were part and parcel of the knowledge generated. For example my in the body learning about the physicality of nursing gives me confidence to suggest that it would benefit SLTs to experience this as part of interprofessional education, perhaps by experiencing a long nursing shift or acting like an ethnographer and observing how frequently nurses are interrupted. I also learnt to appreciate that uncomfortable experiences made me hyper-vigilant. It was important to sit with them because the more comfortable I became, the less I noticed. Overall, exploring interprofessional practice using ethnography created much deeper knowledge about how professionals operated than would have been possible through less immersive research methods.

References Allen, D. (2004). Ethnomethodological insights into insider-outsider relationships in nursing ethnographies of healthcare settings. Nursing Inquiry, 11(1), 14–24. Barnard, R., Jones, J., & Cruice, M. (2020). Communication between therapists and nurses working in inpatient interprofessional teams: Systematic review and meta-ethnography. Disability and Rehabilitation, 42(10), 1339–1349. Barnard R, Jones J, Cruice M. (2021). When interactions are interruptions: An ethnographic study of information sharing by speech and language therapists and nurses on stroke units. Disability and Rehabilitation.

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Berger, R. (2015). Now I see it, now I don’t: Researcher’s position and reflexivity in qualitative research. Qualitative Research, 15(2), 219–234. Bloor, M. (2001). The ethnography of health and medicine. In P. Atkinson, A. Coffey, S. Delamont, J. Lofland, & L. Lofland (Eds.), Handbook of ethnography. Sage Publications. Bourdieu, P. (1990). The logic of practice. Polity Press. Bourdieu, P., & Wacquant, L. J. D (1992). An invitation to reflexive sociology. Polity Press. Burns, E., Fenwick, J., Schmeid, V., & Sheehan, A. (2012). Reflexivity in midwifery research: The insider/outsider debate. Midwifery, 28, 52–56. Carragher, M., Steel, G., O’Halloran, R., et al. (2020). Aphasia disrupts usual care: The stroke team’s perceptions of delivering healthcare to patients with aphasia. Disability and Rehabilitation, 11, 1–12. Clarke, D. J. (2009). Using qualitative observational methods. International Journal of Therapy and Rehabilitation, 16(8), 413–419. Coffey, A. (1999). The ethnographic self: Fieldwork and the representation of identity. Sage Publications. Dean, J. (2017). Doing reflexivity: An introduction. Polity Press. Foster, A., Worrall, L., Rose, M., et al. (2015). ‘That doesn’t translate’: The role of evidencebased practice in disempowering speech pathologists in acute aphasia management. International Journal of Language and Communication Disorders, 50(4), 547–563. Foster, A., O’Halloran, R., Rose, M. L., et al. (2016). “Communication is taking a back seat”: Speech pathologists’ perceptions of aphasia management in acute hospital settings. Aphasiology, 30(5), 585–608. Hammersley, M., & Atkinson, P. (2019). Ethnography: Principles in practice. Routledge. Jacoby, S. F. (2017). The insight and challenge of reflexive practice in an ethnographic study of black traumatically injured patients in Philadelphia. Nursing Inquiry, 24(3). Jenkins, R. (2002). Pierre Bourdieu. Routledge. Langhorne, P., & Ramachandra, S. (2020). Organised inpatient (stroke unit) care for stroke: network meta-analysis. Cochrane Database of Systematic Reviews, 4, CD000197. Ledger, A. (2010). Exploring multiple identities as a health care ethnographer. International Journal of Qualitative Methods, 9(3), 292–304. Reay, D. (2010). From the theory of practice to the practice of theory: working with Bourdieu in research in higher education choice. In E. Silva, A. Ward (Eds.), Cultural analysis and Bourdieu’s legacy: Settling accounts and developing alternatives. Routledge. Wacquant, L. J. D. (2008). Pierre Bourdieu. In R. Stones (Ed.), Key sociological thinkers. McMillan Press Ltd. Wind, G. (2008). Negotiated interactive observation: Doing fieldwork in hospital settings. Anthropology and Medicine, 15(2), 79–89.

Chapter 13

Ethnography as a Way of Knowing in Rehabilitative Palliative Care: A Critical Reflection on Processes, Products, and Potential Pitfalls Andy Bradshaw Abstract Palliative care serves an important role in alleviating suffering in people with life-limiting illnesses. This is through the adoption of a holistic, person-centred, and multidisciplinary approach that assesses and manages a person’s needs and concerns. Rehabilitation is an integral component of palliative care. This chapter aims to outline the potential of ethnography in rehabilitative palliative care through demonstrating its value as a way of knowing. To achieve this, I will reflect on ethnography as a process and product. As a process, I will demonstrate the value of deep immersion in cultural contexts to understand rehabilitation in palliative care through seeing, hearing, and feeling. As a product, I will reflect on how researchers may provide cultural interpretations in this context through ethnographic data analysis and different forms of representation. I will then reflect on the potential pitfalls of ethnographic inquiry in this area through highlighting some of the challenges that ethnographers may experience, including issues surrounding rigour, ethics, and reflexivity. Keywords Creative analytical practices · Ethnography · Ethnographic interviews · Life-limiting illness · Palliative care · Participant observation · Qualitative research · Rehabilitation · Rehabilitative palliative care

Introduction Living with Life-Limiting Illness and the Role of Palliative Care Life-limiting illnesses represent the stage of the illness trajectory at which curative treatments are no longer viable and encompass a wide range illnesses, including cancers, chronic heart failure, chronic obstructive pulmonary disorder, dementia, A. Bradshaw (B) Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London, London, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_13

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and neurological disorders (Twycross, 2003). Being diagnosed with these types of illnesses can radically change a person’s (and their families) lives. This is because the progressive and irreversible nature of life-limiting illnesses precipitates a succession of fears (e.g., of death and dying, suffering, perceiving oneself as a burden) and losses (e.g., of functioning, independence, identity, life) that can have a profoundly detrimental impact on a person’s quality of life (Boston et al., 2011; McKechnie et al., 2007; Parkes, 1998; Schofield et al., 2006). Whilst living with a life-limiting illness is often a traumatic experience, it can also present an opportunity for personal growth through a heightened appreciation for and meaning found in life, and enhanced social relationships with others (Moreno & Stanton, 2013). Integral to facilitating growth and alleviating suffering in the context of a life-limiting illness is the role of palliative care. Palliative care is underpinned by the ethos of ‘total pain’; that is, the appreciation that all types of suffering (physical, psychological, social, emotional, and spiritual) is equal and intertwined, each pertaining the capacity to affect one another in ways that can cause considerable distress (Clark, 1999). The purpose of palliative care, therefore, is not to cure but to palliate all types of suffering to improve quality of life. It strives to do this through the adoption of a holistic and person-centred approach that draws on a diverse multidisciplinary team of health professionals that help to manage a person’s symptoms and assist them in achieving their personal goals and aspirations within in-patient, outpatient, hospital, community, and care home settings (Twycross, 2003). By 2040, it is anticipated that the number of people requiring palliative care in England and Wales is set to rise between 25 and 47% (Etkind et al., 2017). This is due to an ageing population in which people are expected to live longer with lifelimiting illnesses, and efforts to improve the provision and access of palliative care for non-cancer diagnoses, non-malignant illnesses, the homeless, and those from ethnic minority groups (Calanzani et al., 2013a, 2013b). With this considered, the need for palliative and hospice care services to adapt is: beyond doubt. The scale of the challenge ahead is dramatic and will require hospices to significantly increase the extent and scope of end-of-life services. The opportunity and the test for hospices will be whether they can develop the greater reach, accessibility and complexity of service required to meet these needs. (Calanzani et al., 2013a)

Rehabilitative palliative care presents part of the solution in responding and adapting to these challenges.

Rehabilitative Palliative Care The concept of rehabilitation, in its broadest sense, refers to a ‘process of helping a person to reach the fullest physical, psychological, social, vocational, and educational

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potential consistent with his or her physiological or anatomical impairment, environmental limitations, desires, and life plans’ (Javier & Montagnini, 2011). Traditionally, rehabilitation has been narrowly defined as a process in which recovery and restoration of functions are anticipated; expectations that are not always realistic in a palliative care context in which people are undergoing irreversible and progressive physical decline (Leslie et al., 2014). Accordingly, in palliative care, rehabilitation takes on a different meaning. In this context, rehabilitation is best understood as a paradigm that endeavours to help people to ‘live fully until they die’ by adopting a comprehensive approach that integrates rehabilitation, enablement, self-management, and self-care into the holistic, person-centred, and interdisciplinary team approach of palliative care (Tiberini & Richardson, 2015). By doing so, it aims to: optimise people’s function and wellbeing and to enable them to live as independently and fully as possible, with choice and autonomy, within the limitations of advancing illness. It is an approach that empowers people to adapt to their new state of being with dignity and provides an active support system to help them anticipate and cope constructively with losses resulting from deteriorating health. (Tiberini & Richardson, 2015)

An integral aspect of rehabilitative palliative care is physical therapy. This entails using physical interventions (e.g., exercise, physical activity, and movement-based interventions) to address a person’s healthcare needs and work towards achieving the goals of rehabilitative care (Javier & Montagnini, 2011). These goals represent a broad spectrum and are based on work by Dietz (1981) who proposed four levels of rehabilitation, including: • Restorative: Returning people back to initial levels of functioning (e.g., regaining the ability to walk after a fall). • Preventative: Aiming to prevent and buffer illness and treatment-related decline (e.g., maintaining physical functions so that one can walk across a room). • Supportive: Maximising functions so that people can meaningfully participate in activities of daily living despite illness-related decline (e.g., use of Zimmer frames to transport when walking without aids becomes difficult). • Palliative: Helping people to adapt and come to terms with irreversible losses and deterioration (e.g., use of wheelchairs so that those who are unable to walk can still get around). (Examples provided are based on report by Tiberini and Richardson (2015))

The Case for Rehabilitative Palliative Care Evidence demonstrates how those living with life-limiting illnesses prioritise the maintenance and prolonging of physical functioning, independence, and normality so that they can live a dignified life in which they pertain satisfactory levels of autonomy and control (Carter et al., 2004; Johnston, 2010; La Cour et al., 2009; Reeve et al., 2010; Strohbuecker et al., 2011). There is a growing evidence base that supports the role of rehabilitative palliative care in helping people to achieve this.

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Randomised control trials have demonstrated that various types of rehabilitative palliative care (e.g., hospital-based multimodal high-intensity exercise, hospicebased gym services, telerehabilitation, and home-based strength training exercises) are able to facilitate independence in activities of daily living through the improvement of physical outcomes such as function, fatigue, strength, breathlessness, and sleep quality (Adamsen et al., 2009; Cheville et al., 2013, 2019; Crocker et al., 2013; Headley et al., 2004; Oldervoll et al., 2011). Other trials have demonstrated the value of rehabilitative palliative care in reducing hospital admissions and readmissions (Kelley et al., 2012; Maddocks et al., 2015). Qualitative studies have also made important contributions to the evidence base of rehabilitative palliative care. These studies have predominantly adopted phenomenological approaches to explore the meanings that people with life-limiting illness ascribe to their experiences of rehabilitation. They demonstrate how group-based exercise is valued as a way to prolong functioning and independence, take an active involvement in one’s own well-being, and foster supportive relationships and a sense of belonging with others who have a shared understanding of illness (Gulde et al., 2011; Malcolm et al., 2016; Paltiel et al., 2009; Turner et al., 2016). Though there has been an increase in research in rehabilitative palliative care, there is a need for more collaborative approaches that include participants in the research process in ways that allow us to better understand and explain the value and mechanisms through which rehabilitative palliative care may work to enhance quality of life (Leslie et al., 2014). One research design that may be useful in achieving this is ethnography.

Ethnographic Inquiry in Rehabilitative Palliative Care An Overview of Ethnography Ethnography is a specific qualitative research methodology. Because it sits within qualitative research’s ‘fuzzy set’, in which features and characteristics of different methodologies and methods intertwine (Madill & Gough, 2008), definitions of ethnography are varied and contested (Hammersley & Atkinson, 2007). For this reason, some scholars have likened ethnography as akin to a methodological ‘chameleon’ in which it merges into, and incorporates characteristics of, other qualitative traditions (Savage, 2006). That said, ethnographic work pertains unique characteristics and theoretical principles that differentiate it to other qualitative methodologies; these are perhaps best captured through the notion of ‘ethnographic intent’ (Wolcott, 2008). This refers to researchers immersing themselves in the cultural setting that they are interested in over prolonged periods of time, exploring shared patterns of beliefs, values, emotions, mental states, and behaviours, to understand how being part of this culture impacts a person’s (or groups) experiences of rehabilitative palliative care (Agar, 2008; Wolcott,

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2008). Integral to this endeavour is a commitment to understanding research questions from the ‘emic’ perspective (i.e., a subjective and culturally specific understanding that accurately represents the point of view of those being studied) (Fetterman, 2010). Accordingly, it is the role of an ethnographer to be attentive to commonplace, mundane, and often taken-for-granted aspects of people’s experiences that can often be overlooked (Wolcott, 2008). Whilst these features may be present within ethnographic work, it is arguably ethnography’s commitment to making links between the micro and macro–through an emphasis on socio-cultural context—that distinguishes it from other qualitative methodologies (Savage, 2006). Agar (2008) likens this to the analogy of a guitar plectrum in which ethnographers pluck ‘at the details of everyday life in several different locations’. Whilst the micro-level (i.e., the narrow end of the plectrum) seeks to pick at specific events/actions to understand various aspects of rehabilitative palliative care, understandings of these are inextricably attached to the broader sociocultural contexts in which they are located (i.e., the broader end of the plectrum, see Fig. 13.1). Over time, the forms of ethnography that researchers have used to pluck at everyday life in these ways have transformed. Whilst traditional ethnography grew out of anthropology, in which researchers were predominantly interested in studying non-Western cultures that were usually ‘very different to one’s own’ (Hammersley & Atkinson, 2007), it has since diversified and been applied in numerous fields. For this reason, Wolcott (1999) appreciates that in adapting to the demands of academic research in the twenty-first century, ethnography ‘has long slipped out from under [its] anthropological tent’. The varied forms of ethnography that now exist are informed

Macro features of experience -

Socio-cultural context o Political context o Economic context o Cultural context etc.

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Natural/physical environment (and opportunities, or lack of, within)

Micro features of experience -

Thoughts, feelings, emotions, affect Behaviours Interactions with others

Fig. 13.1 An example of the ways that ethnographers may ‘pluck’ at different features of peoples’ experiences of rehabilitative palliative care

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by different epistemological and theoretical positions and include critical ethnography (Castagno, 2012), feminist ethnography (Pillow & Mayo, 2012), autoethnography (Ellis et al., 2011), virtual ethnography (Hine, 2000), and focused ethnography (Knoblauch, 2005; Wall, 2014).

Why Use Ethnography in Rehabilitative Palliative Care? The characteristics of ethnography imbue it with multiple potentials that make it particularly valuable for understanding topics in the context of rehabilitative palliative care. Firstly, the raison d’être of ethnography is to understand people’s lived experiences of rehabilitative palliative care from the ‘emic’ perspective. This aligns with the commitment of palliative care to ensure that care provided to individuals—and the evidence base that informs this care—is person-centred. Second, ethnographic inquiry is well-placed in understanding how the socio-cultural environments in which people are embedded impacts individual and collective experiences of rehabilitation (Atkinson, 2016). This is particularly useful considering that rehabilitative palliative care is delivered across multiple healthcare settings, each of which is likely to impact how rehabilitation is delivered, received, and experienced. Its focus on culture is also important considering the drive being made to improve access and provision of palliative care to those from marginalised and ethnic minority backgrounds. Tapping into, and properly understanding, the nuanced cultural differences that may exist within and between these groups is important if we are to strive towards providing equitable, person-centred, and culturally congruent rehabilitative palliative care to all who require it. Finally, through immersion in the field over prolonged periods of time, ethnography affords researchers the ability to understand the complex processes through which experiences of rehabilitative palliative care occur. Considering that the needs of people with life-limiting illnesses are multiple, complex, and likely to change over time as their illness progresses, capturing the ways in which rehabilitation is experienced over time is important. A recent review has demonstrated how, in the wider palliative care literature, many researchers have drawn on the strengths of ethnography to explore multiple topics (Reigada et al., 2019). However, within the area of rehabilitative palliative care, ethnographies have rarely been used. Reasons for its underutilisation in this field may include confusion over what ethnography is and/or how it can be applied to issues in rehabilitative palliative care (Brink & Edgecombe, 2003; Savage, 2006).

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Reflections on the Potential of Ethnography as a Process and Product in Rehabilitative Palliative Care To better understand what ethnography is, and its potential value in rehabilitative palliative care, the next part of this chapter seeks to draw on personal experiences in the field, and the wider literature, to expand on ethnography as a process and product. The reflections made are based on a PhD project that explored the role of hospice-based Tai Chi on the quality of life of people receiving care at a day therapy unit of a local hospice (see: Bradshaw (2018); Bradshaw et al. (2020) and Bradshaw et al. (2021) for more information).

Ethnography as a Process: Hearing, Seeing, and Feeling The processes of ethnography refer to what ethnographers do during and after fieldwork, including the ways in which they collect, analyse, and interpret data (Hammersley & Atkinson, 2007). In expanding on ethnography as a process, I will broadly outline what fieldwork entails and reflect on the relative merits of collecting multiple forms of data during fieldwork in understanding—through hearing, seeing, and feeling—research topics in rehabilitative palliative care. This is then followed by a reflection on the value of ethnographic data analysis and interpretation.

Fieldwork and Data Collection Fieldwork is a fundamental characteristic of ethnography and entails researchers fully immersing themselves in, and spending a prolonged period of time around, the cultural group and setting that they are interested in studying (Fetterman, 2010). Accordingly, researchers are granted an opportunity in which they are exposed to, and may start to understand, cultural practices at work (Wolcott, 2008). In making the most of the intimate access that is afforded through ethnographic inquiry, Wolcott (2008) proposes that ethnographers may want to answer research questions through ‘experiencing, enquiring, and examining’. Experiencing refers to how we understand cultural spaces through participant observations, whereas enquiring is a more interview-styled technique of informationgathering which requires an ethnographer to converse with participants in formal and informal settings. Examining is about how one may use archives, documents, and other pieces of information that have already been produced to comprehend the inner workings of the context that they are located. Together, these forms of data collection represent the ‘pluralistic’ ways through which ethnographers gather data whilst ‘being there’ in the field (Chamberlain et al., 2011). By integrating multiple forms of data, ethnographers are able to collect different types of information that offer different (yet complementary and mutually enriching) perspectives on the same research question (Chamberlain et al., 2011; Williams, 2018).

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The remainder of this section reflects on personal experiences in the field by describing and explaining the potential value of collecting multiple forms of ethnographic data—including ethnographic interviews and participant observations—in understanding research questions in rehabilitative palliative care.

Interviews: A Way of Hearing As a form of data collection, interviews generally refer to a ‘craft and social activity where two or more persons actively engage in embodied talk, jointly constructing knowledge about themselves and the social world as they interact with each other over time, through a range of senses, and in a certain context’ (Sparkes & Smith, 2014). Generally speaking, the value of interviews in qualitative research is to acquire rich, in-depth data that enables researchers to accurately make sense of the complexity and nuance of participants’ experiences of rehabilitative palliative care (Rubin & Rubin, 2012). In working towards this, the difference between—and, by virtue, the value of—ethnographic interviews compared to qualitative interviewing more generally are twofold. Firstly, ethnographic interviews often take place after a researcher has been immersed in the field for prolonged periods in which they have spent considerable time building respectful and trusting relationships with participants (Heyl, 2001). During the ethnography that I conducted, I spent a 3-year period immersed in the field (as both a volunteer and researcher) which equated to spending over 150 days (and almost 1000 h) in the field (in this case, within the day therapy unit of a local hospice). The majority of this time was spent informally with service users in which genuine bonds were developed through common interests and a genuine care for one another’s well-being. The value of these bonds were instrumental during interviews in which we engaged in in-depth discussions on sensitive topics concerned with irreversible physical deterioration, death and dying, stories of fear and anxiety, and the role that Tai Chi played at alleviating (or in some cases exacerbating) these. Without the relationships that had been formed prior to these discussions, it is unlikely that I would have felt that I had the confidence, or the right, to ask questions on these topics. Moreover, it is equally as unlikely that participants would have felt comfortable providing, in rich depth and detail, such personal and intimate accounts with somebody that they did not know. Secondly, ethnographic interviews usually occur after a ‘survey period’ in the field in which ethnographers are able to spend time learning the basic functions of a social group and setting (Fetterman, 2010). In the ethnography that I conducted, I spent a 2-month period volunteering in the day therapy unit in which I sought to understand its inner workings (e.g., the tacit rules, routines, social norms, and ethos through which it functioned, and how Tai Chi fitted within these). This provided a cultural backdrop and springboard through which I was able to ask meaningful and focused ethnographic questions on the ways through which the socio-cultural dynamics of the day therapy unit shaped participants’ experiences of Tai Chi (Heyl, 2001). These questions were a combination of descriptive (e.g., describing ‘typical’

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cultural settings or events from their point of view), structural (e.g., explaining how knowledge is constructed and organised within specific socio-cultural settings), and contrast (e.g., distinguishing how meaning is developed and attributed to different cultural events/objects) questions (Spradley, 1979). Despite the aforementioned strengths of ethnographic interviews, when used on their own, they are limited in their ability to develop a truly comprehensive understanding of people’s experiences of rehabilitative palliative care. This is because they privilege language as the medium through which knowledge is created and understood, predominantly providing a way of knowing through what we hear (Bagnoli, 2009). Accordingly, they often overlook the many non-linguistic and sensuous ways of knowing that are important to tap into if we are to understand the layered complexity of people’s experiences of rehabilitation in the context of lifelimiting illness (Bagnoli, 2009). One of the methodological strengths of ethnography, therefore, is that interviews are supplemented by participant observations.

Participant Observation: A Way of Seeing and Feeling Participant observation is a hallmark of ethnography. It refers to the process through which an ethnographer establishes themselves as a member of the cultural group that they are studying, participating in everyday activities whilst simultaneously observing the interactions and dynamics that occur between members of these groups (Kawulich, 2005). The merits of using participant observations are largely due to the access that this form of data collection affords researchers. They essentially provide ethnographers with exposure to ‘backstage culture’ (deMunck & Sobo, 1998) in which, by virtue of their ‘insider status’, they are able to access ‘real-life’ places, events, and individuals that are simply not available to those who reside outside of these cultural groups (Kawulich, 2005; Thorpe & Olive, 2016). Accordingly, they enable researchers to explore important aspects of peoples experiences of rehabilitative palliative care, including: (a) non-verbal interactions and expressions; (b) how people communicate/interact with others in natural socio-cultural settings; and (c) compare what people say they do in interviews with what they actually do (Kawulich, 2005; Thorpe & Olive, 2016; Tjora, 2006). In this sense, participant observations are a way of knowing through seeing. In using participant observations as a way of seeing, I was able to observe the different verbal (e.g., spoken interactions between participants) and non-verbal (e.g., facial expressions, body postures/movements, gestures, etc.) behaviours exhibited by participants during Tai Chi sessions, and triangulate these with accounts provided in interviews. Participant observations, however, present ethnographers with ways of knowing that exceed passive observation. In any context, experiences of illness and rehabilitation are inescapably embodied and multi-sensual, and these are important aspects of people’s experiences to tap into in order to develop a holistic understanding of the ways through which people with life-limiting illnesses make sense of different aspects of rehabilitative palliative care. Another strength of participant observation,

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therefore, is that they allow researchers to immerse themselves in the everyday activities of participants in a way that enables them to draw on various conventional (e.g., what they hear, smell, touch, taste) and non-conventional (e.g., kinaesthesis, proprioception, nociception, etc.) senses in order to experience, first-hand, the types of rehabilitation that they are trying to understand (Thorpe & Olive, 2016). By researching at the embodied level and using their time in the field to think with and through their bodies, ethnographers are able to use participant observations as a way of knowing through feeling (Evers, 2006; Smith, 2016). Sparkes (2016) has likened this to being a ‘sensuous apprentice’ in which ethnographers are able to use personal experiences in the field as a form of experiential knowledge that enables them to better consider and understand aspects of participants’ experiences of rehabilitative palliative care that cannot be known through interviewing or passively observing alone. For example, it allowed me to better understand the visceral ways through which the gentle movements conducted to soothing music helped to develop a therapeutic landscape in which a sense of physical relaxation, tranquillity, and respite from everyday activities could be experienced. Moreover, it also allowed me to engage in, and feel the ways in which, participants used Tai Chi as a medium through which they could develop a sense of camaraderie and connectedness with other people in a shared, non-judgemental, and safe space.

Data Analysis and Interpretation Ethnographic data analysis is concerned with making sense of the wealth of data collected during fieldwork. In reality, it is an arduous and iterative process that spans the entirety of the research process, beginning during data collection, and continuing during the write-up and presentation of findings. This is a strength of ethnography because it enables ethnographers to remain responsive to, and subsequently home in on, what are the most salient aspects of participants’ experiences of rehabilitative palliative care whilst immersed in the field. Whilst in the field, analysis is usually inductive whereby, in response to immersion and initial data collection, ethnographers will develop various analytic hunches and impressions; intuitive and tacit understandings of salient aspects of participants’ experiences of rehabilitative palliative care (Parkinson et al., 2016). These intuitions provide a strong and meaningful starting point that ethnographers may use once they cease data collection and turn their attention to analysing their data systematically. More systematic forms of data analysis usually occur after fieldwork and take place through three interlinked stages: description (of ‘what is going on’), analysis (describing relationships between different features of the data set), and interpretation (drawing on theory to explain data) (Wolcott, 1994). The first two steps are broadly concerned with developing a cultural description of the setting and group, and then analysing relationships between important aspects of participants’ experiences of rehabilitative palliative care, through addressing questions such as: • What do my field data tell me?

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• What have I learned in the field? • What interesting and unique things can I say in order to answer my research question? (Eriksson & Kovalainen, 2008) Describing and analysing ethnographic data, however, are only the first steps of ethnographic data analysis. Another important stage of the analytic process requires ethnographers to draw on theory to provide a deductive lens through which they are able to rationalise/explain participants’ experiences within the socio-cultural context in which they reside. This process represents a bridge through which ethnographic data begins its transformation into an ethnographic product through means of ‘cultural interpretation’ (Geertz, 1973). In tackling questions of how and why people experience rehabilitative palliative care in the ways that they do, selecting the most appropriate theories which possess the most ‘explanatory power’ (Fetterman, 2010) is important. In assisting this process, ethnographers may wish to draw on the concept of ‘thinking with theory’ (Jackson & Mazzei, 2013, 2018). Rather than thinking of this approach as a prescriptive set of systematic procedures, it is better thought of as a creative process in which ethnographers borrow and apply (i.e., ‘plug in’) different theories to their data in order to think about them in different ways. In embracing diversity of explanations, and being open to different ways of understanding their data, ethnographers are able to use thinking with theory as a transformative process in which they can ‘undo’ common-sense conceptions of data, maximise ‘explanatory power’, and create new ways of understanding how people experience rehabilitative palliative care (Jackson & Mazzei, 2013, 2018).

Ethnography as a Product: Writing as a Way of Knowing The products of ethnography refer to how ethnographers transform the multiple forms of data that they have collected, analysed, and interpreted, into a detailed, accurate, and contextualised account. Though separate stages of the ethnographic process, analysis and representation are intertwined, and writing may be thought of as: a method of inquiry, a way of finding out about yourself and your topic … writing is not just a mopping-up activity at the end of the research project. Writing is also a way of ‘knowing’ – a method of discovery and analysis. (Richardson, 2000)

Imperative to writing and representation is constructing a person-centred account that conveys a sense of ‘being there’ (Savage, 2006). In achieving this, a strength of ethnography is that it leaves researchers with ample space to be creative in representing data through multiple forms. This is particularly important in rehabilitative palliative care in which people’s experiences are contextually/culturally bound, embodied, sensual, emotional, and complex. Whilst traditional forms of representation have their strengths in capturing these features of experience, they are somewhat limited in that they offer only one way of knowing that can sanitise and oversimplify the complexities through which people experience rehabilitative palliative care.

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Consequently, various scholars have advocated for ethnographers to treat writing as an art form, encouraging them to be embrace innovation and write with ‘panache’ (Atkinson, 2016; Wolcott, 2005). Ethnographers may draw on multiple forms of representation and literary techniques to achieve this, including poetry, ethnodrama, and fictional representations.1 For example, in the research conducted on the impact of hospice-based Tai Chi on quality of life in people with life-limiting illnesses, participants’ experiences were represented through ethnographic creative non-fictions (Bradshaw et al., 2021). These are: a type of creative analytic practice that tells a story which is grounded in research data and draws on literary conventions … [these] stories are not made up or wholly imagined but are based on empirical data systematically collected. Each story is fictional in form yet factual in content. It is grounded in real events and people’s lived experiences that a researcher observed in some fashion (e.g., interviews, participant observation, internet blogs) whilst ‘being there’ in the field. (Smith et al., 2015)

In the context of rehabilitative palliative care, the value of ethnographic representational forms such as these are multiple. They are able to humanise people’s lives through providing a ‘deeply embodied, sensorial, and relational account’ of the ways through which people with life-limiting illnesses experience rehabilitative palliative care in different socio-cultural settings (Smith et al., 2015). Accordingly, they are able to invite readers into peoples’ lives in evocative and moving ways, allowing them to think with—as opposed to merely about—how different people experience rehabilitative palliative care (Smith et al., 2013). Moreover, in drawing on easyto-understand literary styles—as opposed to academic prose and jargon—they are immediately accessible to wide audiences that may be interested in this area of research (e.g., academics, doctors, nurses, physiotherapists, occupational therapists, patients themselves) (Smith, 2013). Ultimately, they provide a means through which ethnographers are able to produce high quality, compassionate, and person-centred pieces of work that are able to push the boundaries through which we understand topics and contribute to practice in rehabilitative palliative care (Atkinson, 2016; Wolcott, 2005).

Reflections on the Potential Pitfalls Associated with Ethnographic Research in Rehabilitative Palliative Care The next part of this chapter will focus on some of the potential pitfalls, which if not considered prior to (and continuously revisited throughout) an ethnographic study, can present researchers with methodological issues and/or ethical quandaries. These include issues surrounding rigour, ethical considerations, and reflexivity.

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Rigour Rigour (sometimes referred to as quality, validity, or trustworthiness) refers to the ‘standards, benchmarks, norms, and, in some cases, regulative ideals’ that guide people’s judgements on the ‘goodness’ of an ethnography (Schwandt, 2007b). It is important that ethnographers consider issues related to rigour before and throughout their projects if they are to produce high-quality work that is able to positively contribute to patient care, clinical practice, and policy (Aoun & Nekolaichuk, 2014). Moreover, considering rigour throughout the research process is important for ethnographers because when it is ignored there is a risk of producing flawed, stagnant, or limited research that devalues the merits and contributions that ethnography offers when researching topics in rehabilitative palliative care (Smith & McGannon, 2018). Most researchers agree that because qualitative inquiry operates in a different paradigm to quantitative, there need to be different criteria through which to judge the rigour of qualitative methodologies such as ethnography (Mays & Pope, 2000; Sparkes & Smith, 2009). That said, exactly how the rigour of ethnographic inquiry is judged has been the source of much debate. These debates are related to epistemological positions regarding an ethnographer’s beliefs on what types of knowledge are produced through ethnographic inquiry and how we are to come to understand this knowledge (Mays & Pope, 2000). Some scholars have argued that the rigour of all qualitative inquiry, including ethnography, can and should be judged by a universal set of fixed quality criteria. This position has been given numerous labels, including the ‘parallel perspective’ (Sparkes, 1998), ‘criteriological approach’ (Sparkes & Smith, 2009), and ‘paradigmspecific’ approach (Ravenek & Rudman, 2013). They propose various lists of criteria through which to conduct and judge the rigour of ethnography, for example, trustworthiness (Lincoln & Guba, 1985), subtle realism (Hammersley, 1992), and multiple checklists such as ‘Consolidated criteria for reporting qualitative research’ (COREQ) (Tong et al., 2007), ‘Critical Appraisal Skills Programme’ (CASP) (Critical Appraisal Skills Programme, 2018), and ‘Standards for Reporting Qualitative Research’ (SRQR) (O’Brien et al., 2014). The notion behind this position is that a set of unchangeable and objective criteria exists regarding the rigour of qualitative research, and that these lists are comprehensive enough to assess the rigour of all forms and genres of qualitative methodology before it has been carried out (Burke, 2016). Moreover, advocates of this approach argue that rigorous research may be achieved through certain methods, such as member checking, inter-rater reliability, data saturation, audit trails, etc. (Smith & McGannon, 2018). Other scholars, however, have critiqued this approach, arguing that if we are to accept that ethnographic research functions within the ‘new paradigm inquiry’ (Lincoln & Guba, 2000), in which an interpretive approach is favoured over the notion that we are able to produce value-free and factual observations (Krane & Baird, 2005), then the idea of objective lists of quality criteria is philosophically incompatible with this paradigm. Moreover, they argue that universal application of these lists to all types of inquiry is unnecessarily exclusionary because it polices what types of research can and cannot contribute to the evidence base in rehabilitative

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palliative care (Sparkes & Smith, 2009). Consequently, proponents of these critiques argue that this approach is ‘a positivist contamination of the naturalist paradigm’ (Spruyt, 2016) because excellent ethnographic research is ‘not achieved solely by the use of appropriate strategies or techniques’ but through ‘knowledge of the literature, serious contemplation, cognition, conceptual, analytical, theoretical skills, and even the ability to write’ (Morse, 2020). These researchers embody a different school of thought to rigour which has been labelled as the ‘relativist approach’. Ethnographers who adopt a relativist approach argue that any list of criteria used to judge rigour should act as a starting point, demonstrating the types of things that researchers might—instead of must—do within the context that they are working to ensure rigour (Gergen, 2014; Sparkes, 1998). These lists may be added to, subtracted from, or combined—based on ‘informed decisions and ongoing judgements about which criteria reflect the inherent properties of a study’ (Burke, 2016)—in order to ensure that they are appropriately tailored the purposes, context, and methods used in any given ethnography. These lists may include—but are by no means limited to—those proposed by Hammersley (1992), Tracy (2010), and Smith and Caddick (2012). Relativists argue that the value of this approach lies in its potential to remain open to creativity and diversity of methods in which alternative forms and traditions are able to complement and enrich one another. Regardless of which approach to rigour an ethnographer takes, it is important that considerations of the means through which they seek to conduct rigorous research are embedded into the preparation of research, and continuously reflected on throughout data collection, analysis, interpretation, and representation. Moreover, it is imperative that researchers are clear about how their approach to rigour aligns with the philosophical underpinnings of their research (e.g., ontology and epistemology) in order to maintain theoretical and methodological coherence.

Ethical Considerations Ethics are an integral aspect of any research project and pervade the entire ethnographic process (Fetterman, 2010). In thinking about ethical considerations within ethnography, alongside the potential pitfalls that researchers may encounter at each stage of research, Palmer (2016) presents the metaphor of an ‘ethical chain’. This chain is a useful guide in highlighting some of the ‘pinch points’ of the ethnographic research process where different types of ethics and ethical considerations are important. This draws on work by Guillemin and Gillam (2004) in presenting two major dimensions of ethics in qualitative research: (a) procedural ethics; and (b) ethics in practice.

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Procedural Ethics One of the first ‘ethically important moments’ of the ethnographic process is negotiating favourable ethical approval from institutional review boards and/or human research ethics committees (Guillemin & Gillam, 2004). This type of ethics is completed prior to commencing fieldwork and relies on researchers pre-empting potential ethical issues that may arise whilst conducting their research (Sparkes & Smith, 2014). During procedural ethics, ethnographers may encounter numerous pitfalls related to review boards not always understanding these types of research designs, both methodologically and epistemologically (Palmer, 2016). Firstly, traditionally, institutional review boards were developed for evaluating the ethical integrity of biomedical research and, as a result, often apply/impose positivist, biomedical assumptions onto qualitative research in ways that disadvantage the fair ethical appraisal of methodologies such as ethnography (McNamee, 2001). Secondly, by virtue of this, panel members on review boards may not always pertain the knowledge necessary to fairly appraise the ethics of ethnographies (Hesse-Bibber & Leavy, 2010). In particular, whilst review boards are usually familiar with ethical issues associated with more traditional qualitative methods (e.g., interviews and focus groups), they are sometimes less well-equipped when it comes to the ethical dilemmas that may be embedded within emergent methods of data collection (e.g., visual and digital methods, etc.) or representation (e.g., ethnographic creative non-fictions, ethnodramas, poetry, etc.) (Palmer, 2016). Thirdly, because ethnographies take place in natural socio-cultural settings, they are unpredictable, thus ‘the mercurial nature of social interaction … means that the pre-planned arbitrary rules of ethical approvals don’t always work in practice’ (Palmer, 2016). Accordingly, Sparkes and Smith (2014) argue that because fieldwork can throw up ‘unexpected, subtle and nuanced ethical dilemmas’ that cannot always be foreseen, institutional ethical approval should be viewed as a ‘basic entry point into a long and complex process’. Whilst in the field, therefore, it is necessary for ethnographers to engage in ethics during practice.

Ethics in Practice There are multiple positions that researchers may adopt in guiding them through ethics during fieldwork. These have been labelled as ‘aspirational’ ethical positions (Lahman et al., 2011), and an ethnographer’s choice on which of these that they adopt requires them to reflect on their own values, beliefs, and ideologies (Palmer, 2016). The smorgasbord of ethical positions that may be used include relational ethics, virtue ethics, feminist ethics, narrative ethics, situational ethics, caring ethics, and culturally responsive relational ethics (Lahman et al., 2011).2 These types of ethical positions provide ethnographers with frameworks that are able to guide them in navigating unexpected and unpredictable ethical issues and dilemmas as they arise in the field.

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In the ethnographic piece in which I explored participants’ experiences of hospicebased Tai Chi, I adopted culturally responsive relational reflexive ethics. This type of ethics is committed to examining ethical issues as relative to the cultural understandings, worldviews, and expectations of the individuals/cultures that an ethnographer is studying. To guide ethnographers in doing this, Lahman et al. (2011) present three ‘r’s. The first of these relates to being culturally responsive to the views and needs of participants through using fieldwork as a way to continuously learn about, and subsequently remain sensitive to and accommodate for, the cultural backgrounds of participants. It also requires researchers to remain sensitive to power imbalances, particularly when writing and representing their research for broader audiences (Palmer, 2016). The second ‘r’ refers to treating ethics as a relational process by ensuring that all interactions with participants, and social groups/cultures more generally, are based on mutual respect, dignity, and connectedness. The final ‘r’ is related to treating ethics as a continuously reflexive process in which ethnographers reflect on interactions between the self, context, and participants and, when necessary, adapt in ways that preserve participants’ autonomy, well-being, and safety. Thus, whilst ethical frameworks such as these provide ethnographers with a framework to guide them through fieldwork, they require intense and continuous self-reflections of the ways in which researchers are impacting the research process and vice versa. This may be achieved through engaging in reflexivity.

Reflexivity Ethnographers are intimately entangled within the research that they conduct and ‘do not go into the field as a passive recorder of objective data’ (Agar, 2008). Instead, they bring with them their own values, beliefs, socio-cultural background, professional/clinical expertise, and personality. Each of these factors affects the research process, whether it is through their ability to forge relationships with participants, understand and navigate ethical issues in the field, or the lens/perspectives through which they analyse and interpret research data (Sparkes & Smith, 2014). Bringing these biases to ethnography, however, is a natural part of conducting work in ‘reallife’ socio-cultural settings, and, as Wolcott (2005) reminds us, the true foe/pitfall of ethnography is not that these exist, but when they go unchecked and begin to distort and prejudice the ways through which we interpret and present participants’ experiences of rehabilitative palliative care. Engaging in ‘reflexivity’, therefore, provides ethnographers with an opportunity to recognise, reflect on, and respond to these issues through a: thoughtful, conscious self-awareness … [it] encompasses continual evaluation of subjective responses, intersubjective dynamics, and the research process itself. It involves a shift in our understanding of data collection from something objective that is accomplished through detached scrutiny of “what I know and how I know it” to recognizing how we actively construct our knowledge. (Finlay, 2002b)

Ethnographers may draw on different variants of reflexivity, including: (i) introspection; (ii) intersubjective reflections; (iii) mutual collaboration; (iv) social

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Table 13.1 Examples of the different forms of reflexivity that ethnographers may draw on in rehabilitative palliative care. Definitions adapted from Finlay (2002a) Type of reflexivity

Description

Introspection

A form of self-dialogue in which ethnographers turn inwardly to reflect on how their first-hand experiences in the field may help to understand participants’ experiences and how these are located in specific socio-cultural contexts

Intersubjective reflections

A self-awareness of the researcher-researched relationship and how interactions with participants affects the ways through which knowledge is co-constructed

Mutual collaboration

A democratic and collaborative approach to reflexivity in which we include multiple reflexive voices through inviting reflexive dialogue from participants throughout the research process

Social critique

Situating reflections of personal experiences in the field within broader theoretical frameworks/critiques of power imbalances, including the ways in which different and unequal social positions with regards to class, race, gender impact the research process

Discursive deconstruction

Reflecting on the ambiguity of, and multiplicity of meanings that may reside in, language throughout data collection, analysis/ interpretation, and representation

critique; (v) discursive deconstruction (Finlay, 2002a). Table 13.1 gives an overview of these different forms of reflection, each of which may be used as a ‘springboard for interpretations and more general insight’ into the ways in which research evidence in rehabilitative palliative care is co-constructed (Finlay, 2002a). In the context of rehabilitative palliative care, able-bodied ethnographers may wish to consider using these different forms of reflexivity to reflect on the ways in which they are trying to understand the lived experiences of people with life-limiting illnesses who are often much older and in different physical health to themselves. Moreover, as access for palliative care is set to increase, with significant drives being made to make rehabilitative palliative care more equitable to those from diverse backgrounds (e.g., the homeless, people from ethnic minority groups, the travelling community, etc.), it is important that ethnographers are able to reflect on the ways in which their own socio-cultural backgrounds impact how they select, explore, and understand their research questions. This is essential if we are to ensure that ethnographic research is able to contribute to the evidence base in rehabilitative palliative care in culturally congruent and person-centred ways.

Conclusion The aim of this chapter was to outline the potential of ethnography as a research approach in rehabilitative palliative care through demonstrating its value as a process and product. As a process, through the intimate access that is provided by immersing

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oneself in specific socio-cultural contexts and collecting multiple forms of data, ethnography offers unique ways of understanding topics in this field through what we see, hear, and feel. As a product, ethnographies can provide rich, culturally congruent descriptions, and interpretations of people’s experiences of rehabilitative care and is open to diverse and creative forms of representation that provides researchers with an array of opportunities to write and disseminate their work in compassionate, empathetic, and person-centred ways. When designing and conducting ethnographies, however, in order to avoid potential methodological and ethical pitfalls, it is essential that researchers are up to date with contemporary discussions regarding rigour, ethics, and reflexivity. Notes 1.

2.

Expansion on these forms of representation exceeds the scope of this chapter. For a detailed explanation on what these are, and their relative merits, see: Sparkes (2002) In-depth discussions of each of these ethical positions exceed the scope of this chapter and references to further reading are provided here. For relational ethics (see: Ellis (2007)), virtue ethics (see: Israel and Hay (2006), Southern et al. (2005), feminist ethics (see: Olsen (1994)) narrative ethics (see: Schwandt (2007a)), caring ethics (see Guillemin and Gillam (2004), and caring ethics (see: Gilligan (1982), Nodding (1984).

Acknowledgements I would like to thank Matthew Maddocks for reviewing, and providing thoughtful and valuable comments on this chapter.

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Chapter 14

‘Comfortably Numb’: Explorations of Embodiment and Recovery in an Ethnography of Operating Theatres Luke Ewart and Shane Blackman

Abstract The aim of this study was to examine how patients make sense of their embodiment with a partially anaesthetised body during their surgical experience in what (Goffman, Asylums: Essays on the social situation of mental patients and other inmates, Doubleday, 1961) refers to as the ‘repair cycle’. The operating theatre is an example of a complex medical environment which traditionally follows a positivist biomedical model of care. This model is widely accepted as appropriate for subjects such as surgery where diagnosis and treatment are extremely circumscribed and structural. We believe that ethnography provides an opportunity to witness human events in the context in which they occur, to understand the embodied conduct of practices and skills exhibited during operating theatre work. This study employed an ethnographic mosaic approach (Blackman, Sociology 41:699–716, 2007), where ethnographic interviews and participant observation were carried out to gather data consisting of 22 interviews and 122 pages of transcribed field notes. Data analysis followed a constant comparative, grounded theory approach (Glaser & Strauss, The discovery of grounded theory: strategies for qualitative research, Transaction, 1967). Findings suggest the patient’s subjective experience of reality during their surgery creates a divergence from experiences in the present which creates a view of the body as ‘dystanced’ and replaced with feeling ‘comfortably numb’. During this time, the surgical team assumes agency for the anaesthetised part of the patient’s body and patients use this to understand and come to terms with their perioperative bodily experience. The need for staff to maintain a backstage area (Goffman, Asylums: Essays on the social situation of mental patients and other inmates, Doubleday, 1961) in the perioperative environment and the effect seeing behind the scenes can have on the patient perspective was also identified. This understanding may help healthcare professionals grasp elements of the patient experience beyond the reach of many positivist research approaches and help the patient face the challenges of undergoing surgery with a regional anaesthetic. Keywords Agency · Anaesthesia · Embodiment · Ethnography · Goffman · Healthcare · Numb · Operating theatres · Positionality · Surgery L. Ewart · S. Blackman (B) Canterbury Christ Church University, Canterbury, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022 C. M. Hayre et al. (eds.), Rehabilitation in Practice, https://doi.org/10.1007/978-981-16-8317-6_14

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Introduction Much of the population faces a surgical experience at some point in their life, increasingly, the type of anaesthetic used for many surgical procedures involves a local or regional rather than general anaesthetic. This anaesthetic technique is also advocated as a part of the enhanced recovery after surgery (ERAS) programme which is associated with early mobility (McDonald et al., 2016) and early discharge (Frassanito et al., 2020). The concept of ERAS was first described by Kehlet (1997) as a way to introduce a series of preoperative, perioperative and postoperative interventions such as the use of regional anaesthesia, preoperative carbohydrate loading, early mobility, and early oral nutrition to reduce postoperative physical and psychological stress, thereby accelerating postoperative recovery (Carli, 2015; Nicholson et al., 2014). This study presents an ethnographic account of the patients’ experiences of knee surgery with local or regional anaesthesia. Our aim here is to produce a thick description, drawn from the views of patients and perioperative staff. This serves as an empirical foundation to support a theoretical interpretation of the behaviour and relationships enacted in the context of everyday life in an operating theatre. We apply Goffman’s (1961) ideas of ‘front and back stage’ and ‘the repair cycle’ to the operating theatre alongside the concept of ‘dystance’ to enable an understanding of the meaning patients attribute to the temporarily altered sensation of their anaesthetised body. By focusing on the patient’s subjective experience of reality during and after their surgery, the ethnographic data on embodiment is revealed through patients feeling ‘comfortably numb’.

Methodology: Ethnographic Approaches and Data Analysis Our ethnographic approach draws upon the symbolic interactionist tradition, which is committed to reconstructing an actor’s view faithful to the everyday experience of the subject (Blumer, 1969). This study upholds a belief in the view that selves and gestures are understood based on previous experiences, where patterns of outcomes or responses in a given social world are learnt and ideas about the world are formulated and reformulated through acting upon it (Rock, 1979). The study sought to generate an authentic ethnographic account of the patients’ experiences of knee surgery with local or regional anaesthesia to understand firstly, to what extent ethnography can aid an understanding of the diverse experience of patients undergoing regional anaesthesia and surgery; and secondly how patients undergoing knee surgery with regional anaesthesia make sense of their place in the perioperative environment. For us, ethnography involves a combination of data collection techniques to assess the validity of inferences between indicators and concepts by examining data relating to the same concept from numerous sources such as fieldwork, interviewing as conversation, participant observation and/or documents (Hammersley & Atkinson,

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2007). Data collected for the study was in the form of preoperative and postoperative interviews with patients, field notes taken during participant observation and interviews with operating theatre staff. This study carried out ethnographic interviews and participant observation to gather data consisting of 22 interviews and 122 pages of transcribed field notes. Data was in the form of transcribed preoperative and postoperative interviews with seven adult patients scheduled for knee replacement surgery or knee arthroscopy under local or regional anaesthesia. Field notes were taken during participant observation either in, or in close proximity to, the field. In addition to the patients, three surgeons, one anaesthetist, one anaesthetic practitioner, one scrub practitioner and a recovery practitioner were also interviewed, making a total of 22 interviews. Thus, data was collected through what Blackman (2007, p. 205) describes as an ‘ethnographic mosaic’. The advantage of this study design was to allow the phenomenon under investigation to be examined within the social and cultural context in which it exists. This was an empathetic approach concerned with interactive communication that enabled research participants to be active in the study (Hayre & Blackman, 2020). Ethnographic data analysis took place through a constant comparative approach which followed the approach of grounded theory (Glaser & Strauss, 1967). In order to arrive at explanations of the social situations and processes experienced by patients, it was first necessary to systematically reduce the complexity of the information generated in the data collection phase (Gläser & Laudel, 2013). Data from the transcripts of interviews and contemporaneous field notes from participant observation were classified, sorted and arranged using the software programme NVivo 12 as a data management tool. Analysis was carried out within case (i.e. looking for themes within each transcript) and across case (i.e. between the different transcripts) and began with reading, re-reading and annotating the transcripts to identify themes, concepts and categories within and across the transcripts and field notes. This was an inductive process that involved learning from the data rather than starting with preconceived notions about the subject matter (Tie et al., 2019). As the data collected in this study was in the form of written words from the field diary and transcripts of interviews, it was necessary to group those words into meaningful categories or descriptive labels so they could be organised to compare, contrast and identify patterns (Munhall, 2012). This iterative form of open coding was conducted without any restrictions or purpose other than to discover meaning in the transcripts in an open way that allowed for the discovery of the unexpected without encouraging final closure. Codes were then organised around concepts, from which patterns or themes developed and a sense of possible connections between the information was gained. Throughout the study, we were concerned to develop grounded theory drawn upon the constructivist approach developed by Glaser and Strauss (1967) which views actors as having the means to control their destiny through actions and reactions to conditions. This method seeks to uncover conditions, how actors respond to conditions and the consequences of their actions, to explain: ... how social circumstances could account for the interactions, behaviours and experiences of the people being studied (Benoliel, 1996 p.413).

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Our constructivist approach is used to provide an opportunity for exploring the ‘real’ nature of patient experience. Seeking inspiration from Glaser and Strauss (1965) earlier study examining the experience of terminally ill patients, our study recognises subjectivity and the acknowledgement of the active involvement of the researcher in the construction and interpretation of data through dialectic processes with the participants and the data (Charmaz, 2014). Realities are therefore assumed to be multiple and layered, not unitary and self-evident (Pidgeon & Henwood, 2003). In other words, the researcher is not seen as an independent and objective observer, but rather an intrinsic part of the constructed reality of the research process (Clarke, 2012).

Ethical Considerations Ethical approval was granted by the local NHS Health Research Authority Research Ethics Committee (Rec reference: 16/SC/0153) and the NHS Trust’s Research and Development Office. All participants were treated in compliance with the ethical principles on human research. Anonymity and confidentiality of participants are central to ethical research practice. Throughout the study, participants were reassured that every effort would be made to ensure the data they provided could not be traced back to them in any reports, presentations or other forms of dissemination that may arise from it. The participants were informed of the purpose of the study, and before giving consent to take part, all participants were informed that some of their words might be quoted. However, it was also explained that pseudonyms would be used and other modifications made at the time of transcription, to ensure anonymity was maintained. In addition, we have also changed other characteristics of participants such as job title or ethnicity to conceal identities and thereby maintain the confidentiality of the data provided by participants. Written consent was obtained from all those agreeing to take part prior to interviews or participant observation. The participants were also informed about their right to withdraw from the study at any time without needing to give a reason and were reassured the standard of care would not be affected in any way if they withdrew from or declined to take part in the study. As Parker (2007) notes, ethnographic research has implications for the communities it studies and consequently, has an increasing perception of having a duty to represent or ensure a voice to marginalised or vulnerable groups. It was therefore necessary to maintain a mindful consideration of the well-being of the individuals being studied throughout the fieldwork while simultaneously attempting to understand the voices and the silences observed.

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Setting, Sample and Context The study was conducted in an acute hospital in the south of England, which provides a range of emergency and elective services and is one of a number of sites that make up one of the largest NHS Trusts in the country, serving a population of around 759,000 people. The Trust provides comprehensive maternity, trauma, orthopaedic, paediatric and neonatal intensive care for a diverse population with a broad age range. Participant observation took place in four locations in the hospital which together reflect the areas visited by patient participants during their surgical journey. The first setting was in an outpatient’s area during the session known as ‘joint school’. The joint school is run within the Trust as a feature of the ‘Enhanced Recovery Programme’ which focuses on educating patients and carers about the process of hip or knee replacement surgery preoperatively, and how to become actively involved in the recovery process. Here, patients attend a presentation explaining each stage of their care so there is an understanding of what to expect. The presentation lasts for about an hour and is followed by an individual interview with a member of the occupational therapy team, who checks the patient’s home situation to ensure all essential equipment and support is in place ready for the patient’s postoperative discharge and recovery. The second setting for the participant observation was in the main theatre department. Within this department are eight operating theatres, four on each side of a long corridor, which cover a range of specialities including ear, nose and throat surgery, head and neck surgery, trauma and orthopaedics, general surgery, gynaecology and obstetrics. The third setting for participant observation was in a day surgery unit. This is in the same building but a separate unit to the main theatre department although some staff and equipment are shared between the two. This department consists of three operating theatres which specialise in a range of operative procedures which do not require the patient to remain in the hospital overnight. The layout of each theatre in the day surgery unit is similar to that of the main theatre and consists of a comparable arrangement of anaesthetic room, operating theatre, scrub area and instrument preparation area. The fourth setting for participant observation was in the outpatient’s clinic where patients attend an appointment with a surgeon and their progress is reviewed. These appointments are often following referral from a general practitioner (GP) and each clinic consists of a mixture of preoperative and postoperative patients. Collectively, these areas reflect those visited by patient participants during their surgical journey.

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Embodiment and Agency: Towards Being ‘Comfortably Numb’1 Embodiment is the way in which people experience and inhabit their bodies and the way in which these bodies incorporate and express social information (Cassel, 1997). Although bodies are biological, their meanings are social, and endowed with meanings that are non-verbal, which Bourdieu (1977) refers to as ‘Learned by body’. Much of the medical social science literature relates to the way practitioners objectify their patients, reducing them to a pathology or mechanical body that can be repaired by opening up, rerouting or replacing individual pieces (Prentice, 2013). But this reductionist view separates embodied patients from the social and historical circumstances that contextualise the whole person, which has led to suggestions of this as a dehumanising approach (Young, 1997). During the ethnography, the feeling of embodiment was apparent for Doreen who said in her recovery postoperative interview: It’s weird because you can hear the noises and feel the vibrations all the way up to your shoulders and the bed is moving, but it’s confusing the brain because you can’t feel anything even though you know it’s happening. It’s like it’s not there. It’s numb. Comfortable, but it’s like it doesn’t exist. The top half is all warm and cosy but the other half isn’t there (Ewart, 2021, p. 156).

As regional anaesthetic takes effect, a distinct area of the patients’ body begins to lose sensory information and gradually becomes distant from the person as a social individual. The sensation of temperature is the first to be lost, followed by touch, pain, the ability to move and then finally pressure. We found that this temporary adjustment to the physical state also influences the way in which patients view themselves and the world around them. Patterson (2018) has suggested that the interface between a positivist medical paradigm and a sociological one is temporally and spatially located in the separation of the body of the patient from their individual and cultural identity. While the patient undergoing a general anaesthetic loses these aspects of identity along with consciousness and agency, the patient undergoing a regional anaesthetic retains consciousness and correspondingly, both agency and individual and cultural identity. However, this must be mitigated against the altered sensations associated with the anaesthetic techniques which temporarily dissociate the anaesthetised area with the personhood that retains agency. As the local anaesthetic takes effect and sensation is lost, agency is passed from the patient to the healthcare professional. In this situation, the patient becomes what Turner (1992) describes as a thinking and choosing agent, not a feeling and being agent (p. 87).

Karlsson et al. (2012b) have suggested the lack of sensation from the anaesthetised area breaks contact with those parts of the body, so the body must be entrusted to the responsibility of carers. Hirschauer (1991) presents this as a distancing of the person from their body, so the body becomes partially or completely distanced from 1

Comfortably Numb, by Pink Floyd (1980) The Wall, Harvest, EMI.

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the person and the free disposal of themself, so that autonomy is lost. Autonomy is not therefore lost, but temporarily suspended as the patient is distanced from part of their body and agency is passed to the server for the duration of the repair cycle. As Janet a patient who had undergone a knee replacement explained in her postoperative interview: Janet: It wasn’t as painful as I thought it would be. I thought the needle would be…really kind of hurt. It did but not as much as I thought it was going to hurt no. Luke: So better than you expected? Janet: Yeah and I, it was only when he picked up my leg over his shoulder that I thought it must be numb (Ewart, 2021, p. 153).

Janet is referring to the surgeon who came into the anaesthetic room and prepared her for surgery. Although the surgeon did not explain what he was doing, the significant event is not that a strange man is manipulating her leg, but that the leg was completely numb. By this point, Janet has already given up agency of this part of her body to the control and responsibility of others. Luke: because you were a bit worried about that before weren’t you? You were worried about how you were going to know if it was numb Janet: How I would know it would really really be numb yes. Luke: So were you really happy about that before or was it only when he lifted your leg right up into the air that you felt oh ok this is… Janet: only when he lifted, because it was a funny feeling. It felt like I could feel my knees. I obviously couldn’t but it felt like… like I could still feel my knees. Luke: when you say you could feel your knees how did it feel? Janet: it did feel like I could have gone like that (moves leg) with my knees but yeah Luke: So when you tried to move your legs, what was that like? Janet: That’s a really odd sensation it just is so…you just can’t. It’s like its glued to the bed isn’t it? What your brain wants to do it just doesn’t… doesn’t do it (Ewart, 2021, p. 154).

The dissociation between self and body is highlighted here. As the known boundaries of the body are altered it raises questions of where is the ‘self’ and who is the ‘I’. This process is normally accepted with a certain amount of resignation on the part of the patient. This was highlighted by Violet, when interviewed on the ward shortly after her knee replacement surgery: It’s got to be done. It’s like I was saying to my daughter beforehand, it’s inevitable. You get to that stage when it’s just inevitable, there is nothing you can do to stop it. Just go with it (Ewart, 2021, p. 154).

Similarly, Astrid explained when she was interviewed on the ward before her arthroscopy: Astrid: I feel like, no I don’t feel in charge. I feel like, I’m quite happy to be guided and everyone doing everything for me. I feel like I’m just following the instructions and whatever. Luke: Are you happy with that? Astrid: I’m happy with that, yes. I want them to take control. They know what they’re doing.

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Luke: So how much do you know about these people that you’re giving over control to? Astrid: Absolutely nothing. Luke: So how can you be comfortable with giving over control to someone you don’t know? Astrid: Well I’ve just got to take that risk and have faith. These people, they are all people out there who’ve got a job where they want to help people. They’ve only got the, that interest, you know and if anything went wrong it would be just fate, an accident. It’s not, you know… (Ewart, 2021, p. 155).

This resignation may indicate a transition to the next stage in the process for the patient. The person becomes the patient when they attend the clinical environment. The patient becomes a case when they are unable to move for themselves and bodily control is handed over to a third party. Once the person’s knee has been cut open and the underlying structures have been exposed the case becomes a disease, which is then treated by the removal of the affected area and replacement with an artificial joint.

Distance, Heat and Touch: The ‘Comforting’ of the Patient’s Bodily Experience The body in this process is neither a ‘disappeared body’ in the sense of a recessive body which is largely absent from thought in everyday lives, nor is it a ‘dys-appeared body’ which is brought to the fore through acute pain, disease or pleasure (Leder, 1990). Instead, this is a body that is conspicuous by its absence. The body has been taken away to be repaired, and in doing so the patient’s personhood becomes ‘dislodged’ from his or her body (Hirschauer, 1991, p. 287). It is ‘distanced’ and in its place is an absence which is perceived in terms of comfort. This is in contrast to the presence of the patient’s body which is experienced in terms of the discomfort or pain that has led to the need for surgery. Nigel a patient who had undergone a knee replacement explained in his postoperative interview how he experienced his body during this time: Luke: So what about lying still on the operating table? Nigel: Oh no problem, lovely. Luke: That was OK? Nigel: Lovely, because normally when you try and lie in one position you can’t. You turn over and all the rest. But because from here downwards was, didn’t exist, there was no problem at all. Luke: What is it like having that sort of sensation where, like you say that bit doesn’t exist? Nigel: Lovely. Lovely. Luke: Why was it lovely? Nigel: It was so restful and relaxing and warm. That’s why. Nothing unpleasant about it at all (Ewart, 2021, p. 156).

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During the ethnography, we found that heat was a bodily sensation that was often associated with comfort during the surgical experience. Potter (2008) describes how heat can be regarded as a specialised form of touch. While touch is a proximal sense which requires physical contact between the body and an external object, heat is transboundary in that it is perceived both within the human body and at the boundaries where the body touches or merges with the external world (Allen-Collinson et al., 2018). What commences as a tactile experience; the touch of an external heat source on skin (such as the heated air of the warming blanket), contributes to the generation of feelings of inner core heat, which merges the concepts of ‘external’ and ‘internal’ heat (Allen-Collinson & Owton, 2015). Heat in this sense is perceived as comfortable in that it acts as a surrogate for touch, which has a well-recognised comforting effect on patients (Bergman et al., 2012; Hankela & Kiikkala, 1996; Mitchell, 2008). As Doreen, a patient scheduled for a knee replacement, explained when interviewed after her operation: The thing that was totally different to anything I’ve had before was that heated blanket over me. Now that was lovely. I really really liked that. Yeah it was comforting. It was nice. I mean I wasn’t cold even before going in but just having that extra little bit of warmth coming over you. I’m not sure whether it was psychological or whatever, I’m sure it helped me relax. I’m sure it did. Yeah, yeah (Ewart, 2021, p. 157).

Experiences of physical warmth (or coldness) have been shown elsewhere to increase feelings of interpersonal warmth (or coldness), without the person’s awareness of this influence (Williams & Bargh, 2008). In support of this, magnetic resonance image (MRI) studies of the brain have demonstrated an involvement of the insula region of the cerebral cortex in processing both physical temperature and interpersonal warmth (trust) information (Sung et al., 2007). Although active warming of patients during surgery has been shown to reduce incidences of surgical site infection, overall length of hospital stay and transfusion requirements (Riley & Andrzejowski, 2018), the association of warmth with comfort and relaxation has not previously been implicated in helping patients to feel more at ease with their surroundings during the perioperative experience.

‘Surgical screens’: backstage in the operating theatre ‘sound’ and ‘gossip’: Exploring the patient’s ethnographic experience of absence and presence In order to further the illusion of the patient’s absence, surgery takes place in what Goffman (1959) refers to as a backstage area. Goffman (1959) suggests that back regions are commonly cut off from the area of the performance by physical partitions, so that members of the ‘audience’ cannot intrude. These physical partitions vary in that they can block out lines of sight, sounds or both. The surgical screen in this instance acts as a demarcation between these front and backstage areas (Goffman, 1959). Behind the screen, the surgeons and scrub practitioners are able to discuss

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the details of the surgical procedure as this is where the mechanical part of the server–client relationship (Goffman, 1961) takes place. Conversely, the social personto-person interaction with the patient takes place on the other side of the screen. This separation is reinforced through the need to maintain the sterile field which encompasses the operation site, the drapes that cover the patient, the fronts and arms of the surgical gowns, the instruments and the associated trolleys. All members of staff are aware of the sterile field and understand the need to protect this area. However, this separation of the social frontstage area and the mechanical backstage area (Goffman, 1959) is not without its problems. The ethnography revealed that some staff are more willing or able to talk with patients on an interpersonal level during surgery than others and are therefore more comfortable interacting in the frontstage area (Goffman, 1959). Jane a scrub nurse explained this shortly after the patient had left theatre for the recovery ward: It is about making sure they are aware that we are aware. We are used to it from obstetrics where they are always awake with no sedation. As an old ward nurse, I am used to talking to patients more than some others who forget. I stand at this end so I know what they can hear (Ewart, 2021 p163).

This was also highlighted during an interview with the scrub nurse Danielle: I mean I think I’ve heard several nurses in my time, theatre nurses, say they’re in theatre so they don’t have to interact with patients because they’re asleep. So I do think it makes a difference. And I think culturally as well, we’re quite diverse and we’ve got some members of staff who don’t actually want to speak (Ewart, 2021, p. 163).

The need for the healthcare professional to remain close to the patient during this time is well-documented (Mauleon et al., 2007; Karlsson et al., 2012a). It is acknowledged that a lack of identified support can leave the patient feeling no longer in control, at risk of feeling insecure, alone and not able to participate in the intraoperative situation (Bager et al., 2015). By remaining close to and in view of the patient, the healthcare professional acts as a surrogate body through which the patient is able to reach out. Although the use of monitoring equipment may enable perioperative staff to observe the patient’s physical status from a distance, this only monitors the patient’s organs rather than the patient as a person. Mol and Law (2004) describe the difference as being between an objective, public and scientific way of knowing the body from the outside and a subjective, private, personal way of knowing the body from the inside. However, monitoring the patient’s physical status in this situation is regarded as normal and can act to reassure both the staff and patient that everything is progressing as expected. Sound in this context can provide a reassuring presence, as was noted in the field diary shortly after Rita a patient scheduled for a knee arthroscopy had a local anaesthetic injection in her knee: The anaesthetic monitor beeps in the background. The SaO2 reads 97% and the heart rate is 79. Rita moves the wires, as these are pressing against her neck. The machine stops bleeping and Rita looks up at the screen (Ewart, 2021, p. 164).

Although the noise made by the monitor is in the background and as such is unobtrusive, the absence of the regular bleep is noticeable by its absence, more than

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by its presence. The halting of the familiar regular sound causes a passive shift of attention, so that the reaction, even for the patient, is to look towards the monitor for reassurance that all is well. Similarly, patients also look to the interactions between staff for reassurance that all is well. This is not always done overtly, because patients often feel as though they are not a part of the action. Instead, this can be done covertly through listening, as Violet a patient scheduled for knee replacement surgery highlighted after her surgery: I was more or less hidden from them wasn’t I? They’d got the screen up. They were talking to one another - but I was listening (Ewart, 2021, p. 164).

This suggests that Violet was still present and retaining agency albeit in a slightly subversive way. By listening to what was happening behind the screen, Violet was eavesdropping on the backstage area (Goffman, 1959). Violet was not the only patient to describe listening to the behind-the-scenes talk. Even though Astrid a patient scheduled for a knee arthroscopy was looking at the television screen during her surgery and was given a commentary of the operation as it happened, she too felt the need to listen to conversations in the backstage area: Astrid: I was only aware of what I could see in front of me. My head was down like this (she tilts her head down) so I couldn’t see very much at all. I was aware there was people behind me and so on. So a lot of it I, just literally because I was, couldn’t see what was going on but I was listening to it as much as I could to people. Luke: Oh, you were listening were you? Did you pick anything up? Astrid: Yeah, there was somebody saying something “is it worth doing that now?” or something. That was about all. I don’t know if he did or didn’t (Ewart, 2021, p. 164).

What Astrid is referring to here is an interaction between Mr Khan the senior surgeon and Otis a trainee surgeon. This interaction was recorded in the field diary: He [Mr Khan] moves the scope to the inner side of Astrid’s knee again. “That’s where you get the pain, there” he says showing us an area which is slightly more pink and not covered with the same smooth white cartilage as the rest of the knee. “there is no meniscus there. There is a bit there, but it is all fluffy. You can see the difference in colour. You can see there is bone on bone arthritis which gives you the pain.” Otis asks whether there is any benefit in doing anything to the meniscus in a situation like this. “If there is an unstable tear, then yes, but yes you are right (Ewart, 2021, p. 165).

This answer is implicit, because Otis has not suggested that Mr Khan does not do anything, he has simply asked the question. However, Mr Khan has picked up on the implied statement that there is no point in doing anything to the meniscus because there is no way to regrow the cartilage; Astrid will eventually need a knee replacement. While the explanation that Mr Khan gives Astrid concerning the inner workings of her knee is a frontstage action (Goffman, 1959), the question Otis poses does not include the patient and is not directed towards her. This is an action that would normally be conducted backstage (Goffman, 1959), as it is: “related to the performance but inconsistent with the appearance fostered by the performance” (Goffman, 1959 p.135). Within the operating theatre, backstage areas (Goffman, 1959) are often

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temporal in nature, created when the patient is rendered unconscious through general anaesthetic. In this example, Otis is not used to a situation where the patient remains awake and so gives an unintentional glimpse of backstage action (Goffman, 1959) which would normally be conducted in an area away from the patient. Although Astrid does not understand the meaning of this overheard ‘gossip’ conversation, the purpose of this covert listening is to gain an insight into the routine of surgery. Astrid wants to be reassured that everything is running smoothly according to the routine. Occasionally, the patient will be intentionally allowed a glimpse of the backstage area (Goffman, 1959). However, this is a rare occurrence as the ontological duality of the patient is maintained throughout; the knee and the person are kept separate. Despite this reductionist approach, sometimes the patient wants to know how their surgery is progressing. Thus, the surgeon may speak to the patient from beyond the screen, but the screen does not come down. Mr Henry, a senior orthopaedic surgeon explained during an interview: If they’re fully awake and they’re engaged and they want to know then I keep them updated if they want to know or “how’s it going?” sometimes you hear over the blood brain barrier that blue sheet. Sometimes they say “can I have a look at …whatever” and sometimes trying to keep sterility going as much as possible you can walk round and just show them want we’ve done. Femoral head and worn out hip. But most of the time in recent months patients have been quite heavily sedated. I think we showed somebody their femoral head last week. Oh no, last week we showed someone the metal plate we’d taken out of their ankle. She was awake throughout the whole procedure, just numbed from the waist down. She had a wound breakdown and she was really keen to see what was causing the wound not to heal. And it was this big clumpy metal plate that someone had put in. The skin just wouldn’t heal over the top of it. So she was so relieved to see it. And whenever we do take metal work out a patient, or a loose body like a bit of bone floating in the knee, psychologically it’s good for them to see it because it prepares them mentally saying “the op’s been a success” It’s good for their wellbeing I think to see that it’s worked. We’ve done what we said we’re going to do. Here it is in the tin. You can see it with your own eyes in a little glass bottle. Can’t take it home but you can see it. And I think from a psychological point of view that is really reassuring (Ewart, 2021, p. 166).

In this scenario, the patient is not permitted into the backstage area directly (Goffman, 1959), rather the medical staff determine how much or how little to show the patient. This is framed in terms of maintaining sterility, as the sterile field is a closely guarded space in the operating theatre. However, a look alone does not compromise sterility. Instead it exposes the inner workings of the surgery which may instead compromise the social basis of the repair cycle (Goffman, 1961).

The repair cycle and ‘dystance’: ‘I get my legs back’ As we discussed the distancing of the person from their body can be seen in the context of Goffman’s (1961) repair cycle, as a method of dealing with the difficulties of having one’s body treated and having to overlook the fact that it cannot be used in the usual fashion while it is being repaired.

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Since the client must reside in the workshop during the active treatment phase of the repair cycle, he is well situated to see the difficulties of assimilating everything that occurs around and to him to the service model (Goffman, 1961, p. 302).

Goffman (1961) explains the repair cycle in terms of three phases of social interaction; a technical part that contains the relevant repair information, a contractual part that contains the terms under which the repair task is carried out and a social part that contains the civilities, courtesies and signs of deference. On the whole, patients are happy to go along with this arrangement. However, if the patient wants more information related to the technical part of the interaction, then this necessitates access to the technical arena where the repair task is conducted. Where this is granted, it is on the contractual terms set by those undertaking the repair. Nigel explained after his knee replacement surgery, during his interview in the recovery ward: I didn’t talk to Mr Kapel because I don’t know how happy he is to talk you through the procedure as he’s doing it. I don’t know to what “leave me alone. I’m concentrating” and so on. It’s a bit like if you’re in a driving test actually talking to the guy next to you and telling him what you’re seeing and what you’re doing, I would personally find that interesting. “right I’m going to do this next. I’m going to do something else next” But because I don’t know Mr. Kapel I thought “leave him alone. Leave him to get on with it (Ewart, 2021, p. 167).

In order for this social interaction to be successful, both the healthcare professional and the patient must adopt the roles attributed to them during this exchange. Goffman explains that: In performing a role the individual must see to it that the impressions of him that are conveyed in the situation are compatible with the role appropriate personal qualities effectively imputed to him. The sober judge, cool pilot, accurate and neat book keeper all provide a basis of self-image (Goffman, 1959, p. 50).

Surgeons during this time are expected to be dexterous, inspirational, and resilient (Royal College of Surgeons, 2018), whereas the patient is expected to have little involvement in this process other than as a docile body (Hirschauer, 1991) or receiver of treatment. In either case: “A self awaits the individual awaiting the position, he need only conform to the pressures on him” (Goffman, 1959, p.51). These roles last for the limited duration of the surgical intervention which Goffman (1959) describes as an example of a situated activity system, a: “somewhat closed, self-compensating, self-terminating circuit of interdependent actions” (p. 51). In accepting the role of surgical patient for this limited period of time, the individual is seen as meeting their obligation to the sick role (Parsons, 1951) by seeking and submitting to appropriate medical care. The patient’s role in this interaction is to act and be treated as though they are separated from their knee, which has been taken away to be repaired. Leder (1990) describes the body in terms of being a ‘tool’ which can best be understood as an ‘incorporated’ structure which withdraws from consciousness in so far as it remains within the tacit body. However, at moments of breakdown, Leder (1990, p. 83) explains: I experience to my body not just from it. My body requires a direct and focal thematization (p.83, emphasis in original).

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This is in contrast to the disappearances that characterise ordinary function and everyday experiences, where the body recedes into the background and is not in conscious thought. The concept of Dysappearance describes a mode through which the body is brought into explicit awareness. It is because the normal healthy body disappears that direct experience of the body is skewed towards times of dysfunction. Leder (1990) calls this the principle of dys-appearance; where the body appears in focus but in a dys state, usually in times of pain or physical discomfort. Similarly, we are introducing the term Dystance to explain the abnormal feeling experienced by patients; described as the anaesthetised part of their body having ‘gone’ and needing to have their legs ‘returned’. Dystance is used to reflect how the feeling of an abnormal apartness from the body is experienced and considered by the patient. This separation continues beyond the surgical procedure and the return of the patient to the ward, until the effects of the anaesthetic have completely worn off. For the patient, the surgical experience is not over until the feeling in their legs is regained and the dystance between the self and the body is returned to normal. Only then can the person begin to shed the role of patient. Towards recovery, the return of sensation was described by patients in terms of their legs being returned. As Janet, a patient who had undergone knee replacement surgery said on the ward after her operation: Apparently it is about 4 hours before you get your legs back. Again, she [Dr Chisholm, the anaesthetist] just said don’t worry about it. There’s nothing you can do about it you see (Ewart, 2021, p. 169).

Similarly, Doreen a patient scheduled for knee replacement surgery explained after her operation: Yeah. Because at the moment we don’t really know how quickly I’m going to get mobile. And until I get my legs back… (Ewart, 2021, p. 169).

Both participants describe the absence of their legs in terms of waiting to get their legs back in a similar way to how one might wait for a car to be returned from the garage. Although the distance between the patient and their knee has not physically changed, there is a dystance that means the knee could easily be in a separate room somewhere else while the repair takes place. Rather than overtly demonstrating subservience to the power of the surgical team, this solution allows the patient to exist as a social person while simultaneously existing as a body part which is passed through the repair cycle (Goffman, 1961). In recovery, Tina the patient explained after her arthroscopy: My leg became theirs! (Ewart, 2021, p. 170).

This suggests it is not until the sensation returns that the patient is reunited with their legs to become whole once again and the repair cycle is complete and recovery can begin. Several aspects of embodiment have been identified within the data collected through the fieldwork. The idea that a part of the body becomes dystanced as sensation is lost, fits with Hirschauer’s (1991) notion that the patient is ‘dislodged’ as a person from their body (or part of their body) as the anaesthetic takes effect.

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This dystance leads to responsibility for the anaesthetised part of the body being taken over by the medical staff. Participants described this as an expected element of surgery with few qualms about giving up agency for part of the self to another person for the duration of the operation. Although the physical distance between the person and their knee during surgery is no greater than at any other time, the knee is outside the present experience of reality, so that a dystance is created and increased through the use of standardised surgical routines. These actions serve to limit the amount of sensory information being received by patients about their body. Anaesthesia prevents any feeling from the area being operated on, while sterile drapes and a screen prevent the patient from being able to see their lower half. The dystance created serves to enable the patient’s knee to be taken into the repair cycle (Goffman, 1961) where it can be fixed as a purely mechanical object, with the knee being returned only after surgery has been completed and the ability to feel has resumed for recovery.

Implications for Practice For patients, surgery is an embodied experience which involves giving control of part or all of their body to someone else to achieve a positive bodily outcome. Where staff attend to the monitoring or technological version of the patient rather than the person, this can become an obstacle to interpersonal communication, leaving the patient feeling isolated. However, in other instances, technology can be used to supplement the reassurances provided by staff. Patients value having a member of staff nearby to be able to interact with during their operation but interacting with patients on this human interpersonal level during the operation is something that some perioperative staff were more willing to engage in than others. While the operating theatre was once a place where the public-facing aspect of health care was minimised through the use of general anaesthesia, the increase in the number of patients having surgery with a regional anaesthetic means that staff may need to reframe their understanding of their role away from a focus on occupational tasks, to one where patient participation is valued and encouraged.

Conclusion The cultural and interpretive nature of our ethnographic study utilised a combination of research methods including participant observation, interviewing, field notes and reflective journaling in an ethnographic mosaic approach (Blackman, 2010; Palmer, 1928). Through a constructivist grounded theory approach, we have sought to establish an authentic account of the participants’ vision of an operating theatre and to understand the patients’ immediate postoperative experience. This approach assumes that social reality is multiple, processual, and constructed and takes into account the

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researchers position with its corresponding privileges, perspective and interactions. During the immediate recovery period, patients felt their autonomy was not lost, but temporarily suspended as it was passed to the server for the duration of the repair cycle. The feeling of an absence of the body was replaced with a feeling of being ‘comfortably numb’ while the body was regarded as elsewhere being repaired. However, the techniques employed by staff to create a backstage area (Goffman, 1959) for this repair work to take place are complex as this must happen in the same locale as their audience, (the patient). Although the patient may be drowsy and have restricted peripheral vision at different moments during this process, the presence of a physical partition does not guarantee the maintenance of a backstage area in which to coordinate perioperative work. Patients are still able to exercise a degree of agency by listening to discussions taking place behind the screen. Although these discussions may not be fully understood, hearing routine discussions about the work of the department can have a reassuring effect on the patient (or otherwise). Staff are aware that if a backstage area is needed for collaboration between medical staff, it is not enough to rely solely on a physical barrier acting as a boundary between the frontstage and backstage areas (Goffman, 1959). We found that subtle non-verbal methods of communication including glances between participants further supported patient’s awareness of their subjective surgical experience and offered reassurance.

Areas for Further Research Several of the participants in this study expressed a desire to be able to watch their surgery on screen as it was happening. As this is a relatively new phenomenon, there has been little research examining how the concept of the clinical gaze has developed with the addition of new technologies for the twenty-first century. We feel this is an area that warrants further investigation, as technology improves and continues to be an integral part of perioperative practice, the opportunities for opening the clinical gaze up to the patient are likely to increase.

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