Adherence to Antiretroviral Therapy among Perinatal Women in Guyana: Challenges and Lessons for Developing Nations [1st ed. 2021] 9811539731, 9789811539732

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Adherence to Antiretroviral Therapy among Perinatal Women in Guyana Challenges and Lessons for Developing Nations Debbie Vitalis

Adherence to Antiretroviral Therapy among Perinatal Women in Guyana

Debbie Vitalis

Adherence to Antiretroviral Therapy among Perinatal Women in Guyana Challenges and Lessons for Developing Nations

Debbie Vitalis Yale University New Haven, USA

ISBN 978-981-15-3973-2 ISBN 978-981-15-3974-9 (eBook) https://doi.org/10.1007/978-981-15-3974-9 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 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. Cover credit: eStudio Calamar and Marina Lohrbach_shutterstock.com This Palgrave Macmillan 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

For Mom and Dad

Foreword

Every early career academic makes a fundamental choice. They can choose to study a well-furrowed field—a research topic which has plenty of existing work, easy to review literature, and an established research community. Alternatively, they can look to where the need is greatest, where there lacks research entirely, and where others have not gone because the work will be challenging, difficult and new. Dr. Vitalis has recognized the importance and lack of evidence for a key group in an under-served country: pregnant and postpartum women living with HIV and their children in Guyana. She has conceptualized and led an innovative and essential study into their needs and experiences. She has also explored the views of healthcare providers—bringing perspectives that allow a greater understanding of the dynamics of care in this context. Dr. Vitalis has combined systematic review, qualitative and quantitative methodologies—showing the value of different epistemological approaches to better comprehend such an under-studied group. She has examined factors ranging from mental health to HIV diagnosis experiences, poverty, religion, pregnancy factors, healthy eating, and health knowledge—recognizing that human behaviour is complex and multifaceted. Importantly, the findings reflect the need to integrate mental health support into HIV services, given the particular vulnerability of women living with HIV in Guyana. This book will be of great value both within Guyana and beyond. It also speaks to universal challenges for pregnant and postpartum women

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FOREWORD

living with HIV, and their value not only as vectors to their children, but as patients, mothers and humans. It also speaks to the vision and dedication of a researcher, and the mentors who supported her innovative work. Lucie Cluver Professor of Child and Family Social Work University of Oxford Oxford, UK University of Cape Town Cape Town, South Africa

Preface

This book is directly related to my role with developing and implementing the prevention of mother-to-child transmission (PMTCT) of HIV programme in the resource-limited setting of Guyana between 2001 and 2009, and its culmination has been undoubtedly a test of my commitment, patience and perseverance. Throughout this incredible journey there were many lessons learnt and challenges faced, though never insurmountable, primarily because of the remarkable people I encountered along the way. It is to them that I owe my deepest gratitude. First and foremost, I would like to thank the Executive Editor of Springer Nature Sagarika Ghosh and her team for approving my book manuscript proposal. Special thanks to the Assistant Editor of Palgrave Macmillan Sandeep Kaur’s for her guidance on the various stages of the publication process. Appreciation is also extended to the anonymous reviewers. I consider myself fortunate and privileged to have been mentored by four phenomenal supervisors—Lorraine Sherr, Zelee Hill, Andrew Copas and Audrey Prost. Many thanks to all of you for your support and feedback. The knowledge I have gained is sincerely appreciated and will guide me as I continue along my career path. I am grateful to the healthcare providers who readily participated in the interviews and others who provided logistical support, particularly Barbara Grant, Joan Stewart, Yonette Elias, Hazel Smith-Lowe, Karen Sears, Eson Crandon, Andrea Lambert, Keith Sealey, Trevor McIntosh

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PREFACE

and Margaret Williams. I would also like to acknowledge Ministry of Health staff Angelina Karim and Jennifer Christopher for providing clinic data and data collection support. Finally, this manuscript could not have been completed without the women who participated in this study. I am very grateful for your trust, time and the courage to share your personal and compelling stories with me. New Haven, USA

Debbie Vitalis

Contents

1

Introduction 1.1 Statement of the Problem 1.2 Background 1.3 General Medication Adherence 1.4 Medication Adherence During Pregnancy 1.5 Adherence to HIV Medication Among Pregnant and Postpartum Women 1.6 Measuring ART Adherence 1.6.1 Patient Self-Reports 1.6.2 Provider Reports 1.6.3 Pill Counts and Pharmacy Reports 1.6.4 Electronic Devices 1.6.5 Biochemical Reports 1.6.6 Surrogate Markers 1.7 Definitions of ART Adherence in Research 1.8 Factors Affecting Adherence 1.8.1 Treatment-Related Factors 1.8.2 Patient-Related Factors 1.8.3 Healthcare System-Related Factors 1.8.4 Facilitators and Barriers to Adherence in the General HIV Population

1 1 2 3 3 4 4 4 8 9 9 9 10 10 10 11 11 11 11

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CONTENTS

1.8.5

1.9

1.10

1.11

1.12

1.13

1.14

Facilitators and Barriers of Adherence in HIV-Positive Pregnant and Postpartum Women Depression in HIV-Positive Persons 1.9.1 Depression in the General HIV-Positive Population 1.9.2 Depression in the General Antenatal and Postpartum Population 1.9.3 Depression Among HIV-Positive Pregnant Women Guyana—Country Background 1.10.1 Health System Overview 1.10.2 General Antenatal Services HIV and AIDS in Guyana 1.11.1 Epidemiology of HIV and AIDS 1.11.2 HIV Programmes and Policies 1.11.3 Role of the Pan Caribbean Partnership Against HIV/AIDS (PANCAP) 1.11.4 Prevention of Mother-to-Child Transmission of HIV (PMTCT) Study Sites 1.12.1 West Demerara Regional Hospital Antenatal Clinic 1.12.2 Dorothy Bailey Health Centre 1.12.3 Campbellville Health Centre 1.12.4 Georgetown Public Hospital Corporation (GPHC) OB/GYN Clinic 1.12.5 Beterverwagting Health Centre 1.12.6 East La Penitence Health Centre 1.12.7 Davis Memorial Hospital 1.12.8 St. Joseph Mercy Hospital 1.12.9 Cumberland Health Centre 1.12.10 Bohemia Health Centre 1.12.11 New Amsterdam Family Health Clinic Guiding Frameworks for This Study 1.13.1 Theoretical Framework 1.13.2 Use of the HBM to Understand Adherence 1.13.3 Research Paradigm Rationale for the Study

12 13 13 14 14 15 17 18 20 21 23 23 23 27 28 29 30 30 31 31 31 32 32 32 33 33 34 35 36 37

CONTENTS

xiii

1.15 Purpose of Study References

38 40

2

Systematic Review of the Literature 2.1 Introduction 2.2 Study Objective 2.2.1 Research Question 2.3 Methods 2.3.1 Search Strategy 2.4 Eligibility Criteria for the Systematic Review 2.4.1 Study Selection 2.4.2 Review of Methodological Quality 2.5 Results 2.5.1 Characteristics of Excluded Studies 2.5.2 Characteristics of Included Studies 2.6 Included Studies—Quantitative 2.6.1 EPHPP Guidelines 2.6.2 Levels of Adherence 2.6.3 Factors Impacting Adherence 2.7 Included Studies—Qualitative 2.7.1 CASP Guidelines 2.7.2 Barriers to Adherence 2.7.3 Women’s Experiences with Adherence 2.8 Summary 2.9 Discussion References

55 55 56 57 57 57 57 59 59 60 60 61 63 63 63 63 64 64 64 64 65 66 67

3

Understanding Guyanese Women’s Experiences of ART Adherence 3.1 Introduction 3.1.1 Rationale for Use of Qualitative Method 3.2 Study Objective 3.2.1 Research Questions 3.3 Methods 3.3.1 Study Setting 3.3.2 Sample and Recruitment 3.3.3 Data Collection Methods 3.4 Research Ethics 3.5 Data Management and Analysis 3.6 Reflexivity

71 71 72 72 72 73 73 73 74 75 75 77

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3.7

4

Results 3.7.1 3.7.2

78 78

Characteristics of Healthcare Providers Characteristics of HIV-Positive Pregnant and Postpartum Women 3.8 Context of Women’s Lives with HIV 3.8.1 Diagnosis 3.8.2 Coping 3.8.3 HIV Care and Relationship with Healthcare Providers 3.8.4 Pregnancy Desires and Expectations 3.8.5 Living Situation 3.8.6 Individual Factors or Influences 3.9 ART Adherence Among Pregnant and Postpartum Women 3.9.1 Adherence to Infant’s ART and Feeding Method 3.10 ART Adherence Perspectives of HIV-Positive Women and Providers 3.10.1 Women’s Adherence to ART Medications 3.10.2 Health System and Perspectives of Service Providers 3.11 Summary 3.12 Discussion 3.12.1 Pregnancy, Motherhood and Adherence Within the Context of HIV Infection References

105 106

Methodology—Adherence Among Pregnant Women with and without HIV Infection 4.1 Introduction 4.2 Study Objective 4.2.1 Research Questions 4.3 Research Ethics and Governance 4.4 Methods 4.4.1 Study Design 4.4.2 Sample Size and Sampling Strategy 4.4.3 Study Setting and Inclusion Criteria 4.4.4 Recruitment Process 4.5 Data Collection

113 113 113 114 115 115 115 116 116 117 117

78 78 79 80 82 84 85 87 88 89 90 90 99 103 104

CONTENTS

4.5.1

Development of Instruments and Field Testing Measures

4.5.2 4.6 Analysis 4.6.1 Data Management and Quality Control 4.6.2 Statistical Analysis 4.7 Summary References 5

6

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117 118 130 130 130 132 133

Characteristics of Pregnant Women with and without HIV 5.1 Introduction 5.2 Characteristics of HIV-Positive and Negative Pregnant Women 5.2.1 Sociodemographic Characteristics 5.2.2 Pregnancy-Related Characteristics 5.2.3 Psychological and Social Characteristics 5.2.4 Health Behaviour and Knowledge Characteristics 5.3 Characteristics of the HIV-Positive Women 5.3.1 Diagnosis and Disclosure Characteristics 5.3.2 ART and ART-Related Characteristics 5.3.3 HIV Treatment Knowledge 5.3.4 Psychosocial Characteristics 5.3.5 Adherence 5.3.6 Health Beliefs and Attitudes to ART Adherence 5.4 Summary 5.4.1 Characteristics of Pregnant Women with and without HIV 5.4.2 Characteristics of HIV-Positive Women

154 154

Adherence Patterns to Prenatal Vitamins and Pregnancy Health Behaviours 6.1 Introduction 6.2 Methods 6.2.1 Measures 6.2.2 Analysis 6.3 Results 6.3.1 Knowledge of Prenatal Vitamins

157 157 159 159 160 160 160

139 139 139 139 141 141 142 146 146 146 148 150 151 154 154

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CONTENTS

6.3.2

6.4

6.5

Prenatal Vitamin Knowledge and Demographic Characteristics 6.3.3 Prenatal Vitamin Knowledge and Pregnancy-Related Characteristics 6.3.4 Prenatal Vitamin Knowledge and Psychosocial Characteristics 6.3.5 Prenatal Vitamin Knowledge and Health Behaviour Characteristics 6.3.6 Predictors of Prenatal Vitamin Knowledge for HIV-Negative Women 6.3.7 Predictors of Prenatal Vitamin Knowledge for HIV-Positive Women Use of Prenatal Vitamin Supplementation 6.4.1 Use of Prenatal Vitamins and Demographic Characteristics 6.4.2 Use of Prenatal Vitamins and Pregnancy-Related Characteristics 6.4.3 Use of Prenatal Vitamins and Psychosocial Characteristics 6.4.4 Use of Prenatal Vitamins and Health Behaviour and Knowledge 6.4.5 Predictors of Prenatal Vitamin Use for HIV-Negative Women 6.4.6 Predictors of Prenatal Vitamin Use for HIV-Positive Women Levels of Healthy Eating Habits 6.5.1 Relationship Between Healthy Eating and Demographic Characteristics 6.5.2 Relationship Between Healthy Eating and Pregnancy-Related Characteristics 6.5.3 Relationship Between Healthy Eating and Psychosocial Characteristics 6.5.4 Relationship Between Healthy Eating and Health Behaviours 6.5.5 Predictors of Healthy Eating Habits Among HIV-Negative Women 6.5.6 Predictors of Healthy Eating Habits Among HIV-Positive Women

161 161 161 161 162 163 163 163 164 164 164 165 166 166 166 166 167 168 168 169

CONTENTS

6.6

Levels of Alcohol and Tobacco Use 6.6.1 Relationship Between Substance Use and Explanatory Characteristics 6.6.2 Predictors of Alcohol and Tobacco Use 6.7 Results Summary 6.7.1 Levels (Unadjusted) of Prenatal Vitamin Knowledge and Vitamin Use 6.7.2 Levels (Unadjusted) of Other Prenatal Health Behaviours 6.7.3 Predictors of Prenatal Health Behaviours 6.7.4 Relationship Between Vitamin Adherence and ART Adherence 6.8 Discussion 6.8.1 Knowledge of and Use of Prenatal Vitamins 6.8.2 The Effect of Alcohol and Tobacco Use on Adherence 6.8.3 The Effect of Parity on Adherence 6.8.4 The Effect of Suicidal Ideation and Depression on Adherence References 7

Predictors of ART Adherence 7.1 Introduction 7.2 Methods 7.2.1 Measures 7.2.2 Analysis 7.3 Results 7.3.1 Relationship of Demographic Characteristics with ART Adherence 7.3.2 Relationship of Pregnancy-Related Characteristics with ART Adherence 7.3.3 Relationship of Psychosocial Characteristics with ART Adherence 7.3.4 Relationship of Health Behaviours with ART Adherence 7.3.5 Relationship of HIV Diagnosis, Disclosure and Support with ART Adherence 7.3.6 Relationship of ART and ART-Related Characteristics with Adherence

xvii

170 170 171 172 172 173 174 174 175 175 176 176 176 178 183 183 185 185 186 186 186 186 186 190 191 191

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CONTENTS

7.3.7

Relationship Between Vitamin Adherence and ART Adherence 7.3.8 Multivariate Analysis of Explanatory Variables 7.4 Sensitivity Analysis 7.5 Summary 7.6 Discussion References 8

9

Utility of the Health Belief Model to Predict Adherence 8.1 Chapter Overview 8.1.1 Role of a Theoretical Framework in HIV Prevention Research 8.2 Methods 8.2.1 Measuring Constructs of the HBM 8.2.2 Analysis 8.3 Results 8.3.1 Assessing Cronbach’s Alpha for ADQ Scale 8.3.2 Levels of Adherence with the ADQ Constructs 8.3.3 ART Adherence and the ADQ Constructs 8.4 Summary 8.5 Discussion References Discussion and Recommendations 9.1 Introduction 9.2 Relationship Between the In-Depth Interviews and Cross-Sectional Study Findings 9.3 Contributions of the Studies to the Literature 9.4 Strengths and Limitations 9.4.1 Limitations of the Cross-Sectional Studies of Pregnant Women With and Without HIV 9.4.2 Limitations of the In-Depth Interviews with Pregnant and Post-partum Women 9.4.3 Weaknesses in Measures/Key Variables 9.5 Key Implications and Recommendations 9.5.1 Future Studies

195 195 195 196 197 198 201 201 201 202 202 202 202 202 206 210 213 215 216 219 219 220 221 223 224 225 226 227 229

CONTENTS

9.6 Conclusion 9.7 Epilogue References Appendices

xix

230 232 234 243

Abbreviations

3TC AACTG ADQ AIDS ANC ART ARV AZT BBSS BCC BMQ-G CAREC CARICOM CASP CD4 CRS DSM-IV ECS EFV EPHPP EU FTC GLB GPHC GUM HAART

Lamivudine Adult AIDS Clinical Trials Group Adherence Determinants Questionnaire Acquired Immune Deficiency Syndrome Antenatal Clinic Antiretroviral Therapy Antiretroviral Azidothymidine Biologic Behavioural Surveillance Survey Behaviour Change Communication Beliefs About Medicine Questionnaire-General Caribbean Epidemiology Centre Caribbean Community Critical Appraisal Skills Program Tool for Qualitative Studies Cluster of Differentiation 4 Catholic Relief Services Diagnostic and Statistical Manual of Mental Disorders, 4th Edition Elective Caesarean Section Efavirenz Effective Public Health Practice Project European Union Emtricitabine Greatest Lower Bound Coefficient Georgetown Public Hospital Corporation Genito-Urinary Medicine Highly Active Antiretroviral Therapy xxi

xxii

ABBREVIATIONS

HAT-QoL HBM HITS HIV LPV/r MARP MCH MCV m-DOT MEMS MOH MS MSAS-SF MSM MTCT NAC NAPS NBTS NDC NHP NHS NLID NNRTI NPHRL NRTI NTD NVP PAHO PCL-C PCR PEPFAR PHQ PI PICOS PLHIV PMTCT PRISMA PTSD PUSH RDC RHA

HIV/AIDS Targeted Quality of Life Questionnaire Health Belief Model Hurt, Insulted, Threatened and Screamed Scale Human Immunodeficiency Virus Lopinavir/Ritonavir Most at Risk Populations Maternal and Child Health Mean Corpuscular Volume Modified-Directly Observed Therapy Medication Event Monitoring System Ministry of Health, Guyana Multiple Sclerosis Memorial Symptom Assessment Scale-Short Form Men Who Have Sex with Men Mother-to-Child Transmission of HIV National AIDS Committee National AIDS Program Secretariat National Blood Transfusion Service Neighbourhood Democratic Councils National Health Plan National Health Service (UK) National Laboratory for Infectious Disease Non-nucleoside Reverse Transcriptase Inhibitors National Public Health Reference Laboratory Nucleoside Reverse Transcriptase Inhibitors Neural Tube Defects Nevirapine Pan American Health Organization PTSD Checklist—Civilian Version Polymerase Chain Reaction Test United States President’s Emergency Fund for AIDS Relief Patient Health Questionnaire Protease Inhibitors Participants, Interventions, Comparators, Outcomes and Study Design People Living with HIV Prevention of Mother-to-Child Transmission of HIV Preferred Reporting Items for Systematic Reviews and MetaAnalyses Posttraumatic Stress Disorder Positively United to Support Humanity project Regional Democratic Councils Regional Health Authority

ABBREVIATIONS

sdNVP SPH STI TDF UK UNAIDS USA VCT VDRL WB WDRH WHO ZDV

Single Dose Nevirapine Solutions for Public Health Sexually Transmitted Infections Tenofovir Disoproxil Fumarate United Kingdom Joint United Nations Program on HIV/AIDS United States of America Voluntary Counselling and Testing Venereal Disease Research Laboratory test World Bank West Demerara Regional Hospital World Health Organization Zidovudine

xxiii

Fig. 1 Map of Guyana1 1 Source Guyana Lands and Surveys Commission

List of Figures

Fig. 1.1

Fig. 2.1 Fig. 2.2

Depiction of the health belief model (Source Derived from Guest, G. & Namey, E. (Eds.). (2015). Public health research methods. CA: Sage; Abraham, C., & Sheeran, P. (2005). The health belief model. In M. Conner & P. Norman (Eds.), Predicting health behaviour: Research and practice with social cognition models (2nd ed.). England: Open University Press) Medline search strategy Study selection flow diagram

15 58 61

xxvii

List of Graphs

Graph Graph Graph Graph Graph Graph Graph Graph

8.1 8.2 8.3 8.4 8.5 8.6 8.7 8.8

Raw scores, perceived susceptibility Raw scores, perceived severity Raw scores, perceived benefits Raw scores, perceived barriers Raw scores, intention to adhere to medication Raw scores, interpersonal aspects of care ADQ construct–intentions ADQ construct–interpersonal aspects of care

207 207 208 208 209 210 214 215

xxix

List of Photographs

Picture 1.1 Picture 1.2

Dorothy Bailey Health Centre, Georgetown, Region 4 Bohemia Health Centre, Berbice, Region 6

29 33

xxxi

List of Tables

Table Table Table Table Table Table Table Table Table Table Table

1.1 1.2 1.3 1.4 1.5 1.6 1.7 1.8 1.9 1.10 1.11

Table Table Table Table Table Table Table Table Table Table Table Table Table

1.12 2.1 3.1 4.1 4.2 4.3 4.4 5.1 5.2 5.3 5.4 5.5 5.6

Measures of adherence Definitions of adherence, 2001–2013 Guyana’s 10 administrative regions Type of health facilities Distribution of health facilities by region Key health and socio-economic indicators Reported HIV cases by gender (2001–2011) Proportion of HIV cases, 2009–2011 Guyana’s HIV/AIDS policies and programmes Key PMTCT indicators ARV regimen for HIV-positive pregnant women and exposed infants Research questions and methodology Key findings from systematic review Demographic characteristics of HIV-positive women Cronbach’s alpha—MSAS-SF Cronbach’s alpha for ADQ constructs Adapted ADQ scale Cronbach’s alpha for HAT-QoL Sociodemographic characteristics Pregnancy-related characteristics Psychosocial characteristics Health behaviour and knowledge characteristics HIV knowledge questions HIV beliefs’ questions

5 6 16 18 19 21 22 22 24 26 28 39 66 79 122 124 126 127 140 141 142 143 145 146

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xxxiv Table Table Table Table Table Table Table Table Table

LIST OF TABLES

5.7 5.8 5.9 5.10 5.11 5.12 5.13 6.1 6.2

Table 6.3 Table 6.4 Table 6.5 Table 6.6 Table 6.7 Table 6.8 Table 6.9 Table 7.1 Table 7.2 Table 7.3 Table 7.4 Table 7.5 Table 7.6 Table 7.7 Table 7.8 Table Table Table Table Table Table

7.9 8.1 8.2 8.3 8.4 8.5

Diagnosis and disclosure characteristics ART and ART-related characteristics HIV treatment knowledge questions Psychosocial characteristics MSAS symptom prevalence, distress and frequency ART adherence characteristics Reasons for any missed ART medication Summary of studies on general adherence in pregnancy Logistic regression model for vitamin knowledge (HIV-negative) Logistic regression model for vitamin knowledge (HIV-positive) Prenatal vitamin use and explanatory variables Multivariate logistic regression model for vitamin use—HIV-negative Relationship between healthy eating habits and explanatory variables Multivariate linear regression for healthy eating habits—HIV-negative Multivariate linear regression for healthy eating—HIV-positive Multivariate logistic regression model for alcohol use—HIV-positive women ART adherence & time since ART Relationship between demographic factors and adherence Relationship between pregnancy-related factors and adherence Relationship between psychosocial factors and adherence Emotional distress and adherence Relationship between health behaviour factors and adherence Relationship of HIV diagnosis factors and adherence Relationship of ART & ART-related factors and adherence Ordered logistic regression model for ART adherence Cronbach’s alpha for ADQ subscales Cronbach’s alpha and GLB coefficients Recoded scores for ADQ constructs Frequency distribution, perceived susceptibility Frequency distribution, perceived severity

147 148 149 150 152 153 153 158 162 163 164 165 167 169 170 172 185 187 188 188 191 192 193 194 196 203 206 211 213 214

CHAPTER 1

Introduction

1.1

Statement of the Problem

Only 74% of HIV-positive pregnant women were able to attain an optimum level of adherence required to achieve viral suppression from both low and high-income countries (Nachega et al., 2012). Antiretroviral adherence in pregnant women is an important public health concern, since non-adherence can result in resistant viral strains in the individual and the public, debilitating health for the mother, and possible HIV transmission to the baby (Bardeguez et al., 2008; Ciambrone et al., 2006; Ickovics et al., 2002; Vaz et al., 2007), particularly the potential for vertical transmission of resistant virus (Hamers et al., 2013; Nachega et al., 2012; Ngarina et al., 2013; Persaud et al., 2007). Adherence has been defined as the extent to which persons embrace medical recommendations for treatment and care (DiMatteo, 2004; Morisky et al., 1986). While antiretroviral drugs have revolutionized treatment outcomes by reducing morbidity and mortality, adherence levels of at least 95% are essential for achieving viral suppression, defined as having a viral load of less than 400 copies/ml (Battaglioli-DeNero, 2007; Paterson et al., 2000; Turner, 2002).

© The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 D. Vitalis, Adherence to Antiretroviral Therapy among Perinatal Women in Guyana, https://doi.org/10.1007/978-981-15-3974-9_1

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D. VITALIS

1.2

Background

Over thirty-five years into the HIV epidemic, women account globally for about 51% (UNAIDS, 2017) of new HIV infections, while women in the Caribbean are affected with a rate of 45% (UNWOMEN, 2017). The Caribbean, with a prevalence of 1.3% (PANCAP, 2017) ranks second in adult HIV prevalence after Sub-Saharan Africa’s rate of 6.8% (KFF, 2017). Guyana’s HIV prevalence of 1.7% (WHO, 2017), represents a decline in prevalence which stood at 2.4% in 2004 (MOH, 2012). Moreover, high prevalence rates of 16.6% and 19.4%, respectively among two high-risk populations, female sex workers and men who have sex with men (MSM) during the last biologic behavioural surveillance survey (BBSS) conducted in 2009 appears to be a contributing factor in the overall prevalence rate (MOH, 2012). As the HIV/AIDS pandemic enters its fourth decade, disparities exist in the rates of infection and mortality among women (KFF, 2017; UNAIDS, 2011, 2013). Women are more susceptible to HIV than men due to biology/physiology (porous vaginal tract, presence of other STIs) and social/cultural (gender inequality, gender-based violence, cultural and sexual norms, stigma and discrimination) factors (Higgins et al., 2010; Quinn & Overbaugh, 2005; Türmen, 2003). Among adolescents and young women, infection rates are significantly higher than their male counterparts. Globally, only 77% of HIV-positive pregnant women obtained antiretrovirals (ARVs) to prevent parenteral HIV transmission (UNWOMEN, 2017), while the Caribbean region has made substantial progress with coverage of 75% (UNAIDS, 2018). Without ART treatment, HIV-positive women are at increased risk of HIV transmission to their babies. HIV transmission to a baby or infant can occur during pregnancy, labour and delivery or breastfeeding. According to UNICEF (2012), over 90% of children living with HIV were infected through MTCT. Without intervention, the risk of MTCT can be as high as 45% in resource-poor countries (De Cock et al., 2000; Newell, 2006; Taha, 2011; WHO, 2010). However, transmission can be reduced to less than 2% (Newell, 2006; WHO, 2010) through the use of ART during pregnancy, delivery and breastfeeding; through delivery by caesarean section and the use of only breastmilk or breastmilk substitutes (De Cock et al., 2000; Newell, 2006; Thorne & Newell, 2004). Read and Newell (2005) systematic review reported significant reductions in MTCT through elective caesarean sections, provided the surgeries are conducted prior to

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INTRODUCTION

3

onset of labour or rupture of membranes. However, these surgeries primarily occur in developed countries located in North America and Europe with high morbidity and mortality risks for infant and mother (haemorrhage, anaemia and pneumonia in the mother; and respiratory infections in the new-born), particularly in developing countries (Read & Newell, 2005; Sturt et al., 2010).

1.3

General Medication Adherence

Adherence to treatment and care regimens has historically been challenging due to the increasing prevalence of chronic diseases and their reliance on individuals’ self-care (DiMatteo, 2004). The literature defines adherence as the level to which patients follow medical advice or treatment plans such as taking medications, keeping medical appointments and maintaining lifestyle changes (Morisky et al., 1986; DiMatteo, 2004; DiMatteo et al., 2007; Simek et al., 2012). Adherence to treatment for chronic diseases such as asthma, hypertension and diabetes is about 50% among persons who are aware of the gravity of their illness to 30% among those who don’t (Chesney, 2003). In a review of published studies on adherence over a 50 year period, DiMatteo (2004) obtained a range of adherence from 65.5% for sleep disorders to 88.3% for HIV.

1.4

Medication Adherence During Pregnancy

Adherence to prescribed medication is also problematic in pregnant women. A study by Riley et al. (2005) among a cohort of 1626 pregnant women in the San Francisco Bay area found an overall adherence rate of 44%. Women with low levels of education and chronic disease had higher usage of prescribed drugs than their counterparts who were college graduates, while African American women more readily adhered to these drugs than white women. Sawicki et al. (2011) reported 59% non-adherence to prescribed drugs among 819 pregnant women at outpatient clinics in Australia, primarily due to forgetfulness. A similar study by Oliveira Filho et al. (2012) among 130 Brazilian women who were prescribed drugs, such as, iron supplements, pain killers and antibiotics found only 19% complied with their regimens. High educational background, financial independence, early antenatal care and a prior abortion were inversely associated with adherence.

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D. VITALIS

1.5 Adherence to HIV Medication Among Pregnant and Postpartum Women Women are not adhering at the high levels needed to maintain viral suppression with some studies suggesting greater adherence during pregnancy than the postpartum period (Bardeguez et al., 2008; Ickovics et al., 2002; Mellins et al., 2008; Vaz et al., 2007), although a study in South Africa showed better adherence postpartum (Peltzer et al., 2011). Retention in care is important for effective PMTCT and successful maternal-infant outcomes (Aliyu et al., 2016). However, lost to followup (LTFU) is frequently observed both during and after pregnancy (Bengtson et al., 2016; Shaffer et al., 2014). Risk factors for LTFU include young age, low educational level, unemployment, few antenatal care visits and late enrolment in antenatal care (Bengtson et al., 2016; Boyles et al., 2011; Haas et al., 2016). Interventions to stem these losses include community support, peer support, health system strengthening, improved quality of adherence and retention counselling, and active tracing of defaulters (Aliyu et al., 2016; Llenas-García et al., 2016; Shaffer et al., 2014).

1.6

Measuring ART Adherence

A wide range of measurement strategies (Table 1.1) such as pill counts (Kunutsor et al., 2010; Minzi & Naazneen, 2008), electronic caps (Lyimo et al., 2011; Turner, 2002), provider reports (Denison et al., 2015; Walshe et al., 2010), pharmacy reports/refill records (Gutierrez et al., 2012; Tweya et al., 2012), plasma levels (Leierer et al., 2014; Minzi et al., 2011) and self-reports (Ndubuka & Ehlers, 2011; Teshome et al., 2015) have been used to measure adherence, each with its own strengths and weaknesses. 1.6.1

Patient Self-Reports

Self-reports (Table 1.2) are more commonly used to measure adherence in resource-constrained settings because of ease of use and cheaper costs (Ndubuka & Ehlers, 2011). Using this method, the patient is asked to recall the number of doses missed over a particular period of time. Although it is easy to use in the clinical setting, it is prone to biases such as recall and providing socially acceptable answers. Although self-reports

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INTRODUCTION

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Table 1.1 Measures of adherence Measure

Issues

References

Self-reports

• • • • •

Provider reports

• Easy to use • Unreliable

Pill counts and pharmacy reports

• Labour-intensive • Can indicate if pills picked up from pharmacy • Unable to determine if pills ingested • Indicates time & date of bottle openings • Unable to tell if pills were actually taken

Becker (1985), Wagner and Rabkin (2000), Martin et al. (2001), DeMasi et al. (2001), Arnsten et al. (2001), Paterson et al. (2002), Simoni et al. (2006) Martin et al. (2001), Bangsberg et al. (2001), Paterson et al. (2002) Becker (1985), Wagner and Rabkin (2000), Martin et al. (2001), Paterson et al. (2002)

Electronic devices (MEMS caps)

Biochemical reports (plasma drug levels)

Surrogate markers (viral load, CD4)

Low cost Ease of use Correlates with plasma levels Recall bias Social desirability bias

• Expensive • Poor correlation with adherence levels • Drug interactions resulting in inaccurate results • Expensive • Treatment failure can mask results • Viral load better indicator

Wagner and Rabkin (2000), Arnsten et al. (2001), Turner (2002), Shuter et al. (2007), Sherr et al. (2008) Martin et al. (2001), Paterson et al. (2002), Bangsberg (2006)

Martin et al. (2001), Mannheimer et al. (2002), Shuter et al. (2007)

have been shown to overestimate adherence (Bangsberg et al., 2001), they have been found to be reliable and cost-effective since they are cheap and easy to use in a variety of settings, and have a strong correlation with plasma HIV levels (DeMasi et al., 2001; Simoni et al., 2006; Starace et al., 2006).

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Table 1.2 Definitions of adherence, 2001–2013 Authors

Year

Location

Sample

Measures

Definition

Wilson, T., et al.

2001

USA

264 pregnant women

Self-reports of # of pills taken during prior 4-day period; viral load

Murphy et al.

2002

USA

65 women

Carrieri, M., et al.

2003

France

96 patients (66 men and 30 women)

Power, R., et al.

2003

USA

73 men and women

Murphy, D., et al.

2004

USA

115 men and women

Simoni et al.

2006

USA

136 men and women

Wang and Wu

2007

China

181 men and women

Self-reports of # pills taken daily in past 3 days; pill counts Self-reports of # of pills taken daily during week prior to visit Self-reports of missed/delayed doses in prior 4 days Self-reports of 3 measures—doses taken past 3 days; past week and past month Self-reports of 3 measures for prior 3 days—dose, pill and time adherence; viral load data Self-reports of doses taken in 3 days prior to visit

Complete and incomplete adherence Complete = taking all drugs per day over 4-day period Adherent = taking all meds all the time

Reynolds, N., et al.

2007

USA

464 men and women

Self-reports of # doses missed daily over 4-day period; adherence to daily schedule, instructions, weekend, and last time missed; viral load data

Non-adherent = taking < 80% of meds for the week Non-adherent = any missed dose during 4-day period Adherent = taking ≥ 95% of meds Adherent = average percentage for 3 measures over 3-day period Adherent and non-adherent; Adherent = taking ≥ 95% meds Adherence index of 0–100 for all measures

(continued)

1

INTRODUCTION

7

Table 1.2 (continued) Authors

Year

Location

Sample

Measures

Definition

Schonnesson, L., et al.

2007

Sweden

193 patients (145 men and 48 women)

100% adherence or suboptimal adherence

Vaz, M., et al.

2007

Brazil

72 pregnant and 79 non-pregnant women

Williams, M., et al.

2007

Jamaica

101 men and women

Harvey, K., et al.

2008

Jamaica

116 men and women

Self-reports of 3 types of adherence -dose, schedule and diet during prior 4 days Self-reports on # missed doses for each drug during past 4 days; pill counts Self-reports of doses and pills taken in past week; provider reports on above Self-reports of doses missed in prior 24 hrs and 7 days

Bardeguez, A., et al.

2008

USA

519 pregnant women

Mellins, C., et al.

2008

USA

399 pregnant women

Cohn, S., et al. 2008

USA

161 pregnant women

Self-reports of doses missed for each drug for prior 4 days and last time missed dose Self-reports of each drug missed 2 days prior to visit and last time missed dose

Self-reports of missed doses for each drug for prior 4 days and last time missed dose

Adherent = ≥ 95% meds taken as prescribed at 2 different times Good adherence = mean levels of ≥ 95%; non-adherent = < 95% Good adherence = no missed doses in 24 hr period; poor adherence = ≥ 1 missed dose in 24 hr period Perfect adherence = no missed doses 4 days prior to visit Complete adherence = complete doses in past 2 days + no missed doses in the past month Recent adherence = no missed doses during 4 days prior to visit; extended adherence = no missed doses for > 3 months

(continued)

8

D. VITALIS

Table 1.2 (continued) Authors

Year

Location

Sample

Measures

Definition

Mo and Mak

2009

China

102 men and women

Self-reports of meds taken in prior 4 days

Igwegbe et al.

2010

Nigeria

368 pregnant women

Self-reports on # pills missed in prior month

394 men and women

Self-reports of meds taken daily over past 7 days

Adherers = taking meds most of the time + following diet most of the time + no missed doses in past weekend Adherent = taking ≥ 95% meds as prescribed Adherent = taking ≥ 95% meds as prescribed

720 men and women

Self-reports of # doses missed in past 7 days; MEMS reports Self-reports of meds taken in previous 4-day period

Allen, C., et al. 2011

Thirumurthy, H., et al.

2012

Antigua and Barbuda; Grenada; Trinidad and Tobago Kenya

Achappa, B., et al.

2013

India

116 men and women

Ayuo, P., et al.

2013

Kenya

4284 pregnant women

1.6.2

Self-reports of # pills taken in past 7 days

Adherence = no missed doses in past 7 days High adherence = > 95% adherence; Low adherence = < 95% adherence Perfect adherence = taking all meds in past 7 days; Imperfect adherence = any missed dose in past 7 days

Provider Reports

Health care practitioners estimates of adherence have proven to be unreliable and thus not recommended as a tool due to inconsistencies with actual patient levels (Bangsberg et al., 2001; Martin et al., 2001; Wagner & Rabkin, 2000). In a study by Paterson et al. (2000) both doctors and nurses misinterpreted the patient’s level of adherence by 41 and 30%, respectively.

1

1.6.3

INTRODUCTION

9

Pill Counts and Pharmacy Reports

Pill counts involve checking the number of pills remaining by a health care provider at the health facility as a percentage of the number of pills that should have been taken. This has been found to not only be labourintensive, but can be prone to an erroneous count if pills were dumped by the patient rather than being ingested. Pharmacy reports can assist with indicating when prescriptions were received, but are subject to the same biases as pill counting (Becker, 1985; Martin et al., 2001; Wagner & Rabkin, 2000). 1.6.4

Electronic Devices

The Medication Event Monitoring System (MEMS) is an electronic device attached to the cap of the pill bottle which records the opening of the bottle including the date and time. This data can then be downloaded into a database. MEMS can over- or under-estimate adherence as it can record when a pill bottle was opened, but may not accurately reflect one’s behaviour, since one could either take out the pills and not use them or take out all the required daily doses and would be recorded as being non-adherent—even if they were all subsequently taken (Arnsten et al., 2001; Sherr et al., 2008; Turner, 2002). 1.6.5

Biochemical Reports

Plasma drug levels have been used to assess treatment failure (Odaibo et al., 2013; Wertheimer et al., 2006). However, these are expensive and are problematic for measuring nucleoside reverse transcriptase inhibitors (NRTI). Also, testing at this one point in time may not be a true indication of adherence levels. Another indicator measuring mean corpuscular volume (MCV) is affected by the drugs Stavudine and Zidovudine. These markers can underreport adherence, particularly when drug resistant strains and other factors cause therapeutic failure, even though the person was adherent (Taiwo, 2009; Wall et al., 1995). Moreover, some persons have demonstrated sustained viral suppression despite poor adherence which can vary with the regimen and pattern of non-adherence (Bangsberg, 2006; Shuter et al., 2007).

10

D. VITALIS

1.6.6

Surrogate Markers

Viral load and CD4 counts are regularly used as proxy measurements for adherence, although research has shown that viral load is a better indicator. Although these markers indicate a more accurate reflection of adherence they are more costly for use in limited resource settings (Kagee & Nel, 2012). Unfortunately, there is no ideal or “gold standard” (Farmer, 1999) measurement for adherence since some of the methods listed above have either underestimated or overestimated adherence. Therefore, multiple approaches are needed to assess adherence in order to tailor the regimen to individual circumstances. Researchers have also noted different patterns of adherence among non-adherers, including changes in the same individual over time and called for an understanding of these patterns and “simple” measures of measurement in order to develop targeted interventions (Hill et al., 2003; Sherr et al., 2010).

1.7

Definitions of ART Adherence in Research

Adherence has not only been defined differently, but studies have utilized different recall periods, even among researchers using the same instrument, thereby making comparisons difficult. Table 1.2 includes examples of the types of measures and definitions used for ART adherence from a PubMed review, 2001–2013.

1.8

Factors Affecting Adherence

Sustained patient adherence to ART is necessary for successful treatment outcomes and reductions in morbidity and mortality (Achappa et al., 2013; Allen et al., 2011; Matsui, 2012). ART adherence can be complicated by a variety of factors that can adversely affect treatment outcome. These factors can be grouped into three categories, namely treatment-related, patient-related and the healthcare system.

1

1.8.1

INTRODUCTION

11

Treatment-Related Factors

Treatment-related factors include the number of pills taken, frequency of medication and adverse effects. Protease inhibitors may cause nausea, vomiting and/or diarrhoea, while the non-nucleoside reverse transcriptase and nucleoside reverse transcriptase may affect the central nervous system, and skin and body image via abnormal fat deposits (BattaglioliDeNero, 2007; Chesney, 2003). Some of these effects can be temporary, while some may persist. However, with the variety of medications available today, substitutions can be made to alleviate these effects. 1.8.2

Patient-Related Factors

Patient-related factors include income level, socio-economic status, education, psychiatric issues, absence of social support, depression, stress, substance use and self-efficacy—persons’ belief that they are capable of complying with their treatment regimens (Battaglioli-DeNero, 2007; Poppa et al., 2004). 1.8.3

Healthcare System-Related Factors

Healthcare system-related factors include access to health care services, support from health care providers in terms of providing education on medications prescribed, medication reminders such as text messages and phone calls (Battaglioli-DeNero, 2007; Poppa et al., 2004). 1.8.4

Facilitators and Barriers to Adherence in the General HIV Population

A systematic review of 37 qualitative and 47 quantitative studies by Mills et al. (2006), examining barriers and facilitators to adherence in both developed and developing countries identified barriers common to both settings, such as: non-disclosure; drug use; type of regimen and pill burden; forgetting and personal commitments (job, family). Facilitators for developed countries included improved health outcomes, easy regimen and acceptance of serostatus. Research by other authors have identified similar barriers as Mills (Achappa et al., 2013; Hill et al., 2003). Other issues observed include ART side effects, busy schedules, medication costs, transportation costs,

12

D. VITALIS

financial constraints and feeling good (Allen et al., 2011; Hill et al., 2003, Nachega et al., 2006; Remien et al., 2003; Roura et al., 2009; Safren et al., 2005); low self-efficacy (Barclay et al., 2007); lack of food (Kalichman et al., 2011); psychological issues (suicidal thoughts, anxiety, posttraumatic stress, depression) and stigma (Achappa et al., 2013; De La Haye et al., 2010; Peterson et al., 2012; Sherr et al., 2010). Facilitators of adherence include free ART drugs, improved health, family obligations, pill reminder aides, incorporating ART into daily routine, disclosure, counselling and social support (Allen et al., 2011; Roura et al., 2009; Vervoort et al., 2009; Watt et al., 2009). Being of older age was also associated with better adherence (Sherr et al., 2008, 2010). 1.8.5

Facilitators and Barriers of Adherence in HIV-Positive Pregnant and Postpartum Women

Facilitators and barriers to adherence in the pregnant and postpartum population are similar to what obtains in the general HIV population as identified in the studies below. A key motivator for pregnant women was the pregnancy itself and the desire to have an HIV-negative baby; while having a child or children helped improve adherence for postpartum women (Ciambrone et al., 2006; McDonald & Kirkman, 2011; Wood et al., 2004). However, research has shown greater adherence during pregnancy and declining rates postpartum (Peltzer et al., 2011). In a quantitative study on Zidovudine (ZDV) adherence among HIVpositive pregnant women Demas et al. (2005) found social support, disclosure to family and religion had a positive impact on adherence, while demographic and clinical variables were not significantly associated with adherence. Demographic variables were also not found to be associated with adherence by Mellins et al. (2008). In a qualitative study by Ciambrone et al. (2006) among pregnant and postnatal women attending a medical clinic in Puerto Rico, barriers identified were lifestyle issues, job-related, forgetfulness, unstable living conditions and non-disclosure of status. Other factors identified in other studies include stigma and discrimination, financial constraints, transportation costs, lack of food, distance to clinic, long waiting times for care, low educational level, drug use, being away from home, sleeping through time for ART dose and poor relations with staff and depression

1

INTRODUCTION

13

(Duff et al., 2010; El-Khatib et al., 2011; Mellins et al., 2008; Mepham et al., 2011; Peltzer et al., 2011). While ART is known to significantly reduce the risk of MTCT, use of these drugs over time, particularly Nevirapine and Efavirenz can result in varying levels of hepatotoxicity (liver damage) (Huntington et al., 2015; Marazzi et al., 2006). Concerns have also been raised about the use of protease-inhibitor (PI) based regimens which have resulted in low birth weight (LBW) and preterm birth (PTB) (Mesfin et al., 2016), as well as small-for-gestational-age (SGA) babies (Fekadu Mazengia Alemu & Fantahun, 2015).

1.9

Depression in HIV-Positive Persons

Depression is more prevalent among HIV-positive persons than those who are not, adversely affecting medication adherence (Lewis et al., 2012; Peterson et al., 2012). Antenatal maternal depression contributes to adverse outcomes on the foetus and infant, and places women at higher risk for postnatal depression (Fernandes et al., 2011; Hartley et al., 2011; Pottinger et al., 2009). 1.9.1

Depression in the General HIV-Positive Population

HIV-positive persons are twice as likely to suffer from a major depressive disorder as those who are HIV-negative (Ciesla & Roberts, 2001). In a study on depression and anxiety in HIV-positive women, Morrison et al. (2002) discovered that major depression was four times more likely to occur in HIV-positive women (19.4%) than in those who are HIVnegative (4.8%), and that these women experienced higher anxiety levels than their negative counterparts. Among HIV-positive persons, untreated depression can affect their quality of life, lower CD4 count, and accelerate disease progression, and reduce their capacity to adhere to ART (Fialho et al., 2013; Starace et al., 2006; Zimpel & Fleck, 2014).

14

D. VITALIS

1.9.2

Depression in the General Antenatal and Postpartum Population

Although pregnancy can be a period of joy and great expectations, it can also be a time of great psychological distress. Many women experience depression during pregnancy and the postpartum period. Researchers have found that depression and anxiety during pregnancy are strong predictors of postpartum depression (Milgrom, 2008; Robertson et al., 2004). Depression is also linked with poor attendance at antenatal clinic (Leigh & Milgrom, 2008). In a systematic review on the prevalence of depression during pregnancy in developed countries, Bennett et al. (2004) found that rates across many countries ranged from 7.4 to 12.8%, while high rates ranging from 41 to 48% were reported from three African studies (Hartley et al., 2011; Lewis et al., 2012; Rochat et al., 2011). Risk factors for antenatal and postnatal depression include anxiety, stress, abuse, maternal age, poverty, low educational level and lack of social support (Hartley et al., 2011; Koleva et al., 2011; Leigh & Milgrom, 2008; Luke et al., 2009). The negative effects associated with depression for the health of the woman, the foetus and the infant’s future milestones (behavioural and cognitive) have been well documented, and include early delivery (preterm) and pre-eclampsia (Marcus et al., 2003); low birth weight, low Apgar scores, stunting and low weight for age (Alder et al., 2007; Koleva et al., 2011; Marcus et al., 2003; Parsons et al., 2012; Rahman et al., 2004; Tsai & Tomlinson, 2012). Another mood disorder common among postpartum women is posttraumatic stress disorder (PTSD). In a review of the literature on depression and anxiety during pregnancy, Alder et al. (2007) found prevalence of PTSD ranging from 7.7 to 10.7%, with negative impact on maternal, foetal and delivery outcomes. Predictors of PTSD are anxiety in pregnancy and the delivery process (Zaers et al., 2008). 1.9.3

Depression Among HIV-Positive Pregnant Women

HIV-positive pregnant women prone to depression as a result of their pregnancy are also at risk for depressive symptoms due to their HIV status (Blaney et al., 2004). Recent studies have found similar rates of depression and mood disorders among HIV-positive and negative pregnant

1

INTRODUCTION

15

women. Rubin et al. (2011) in their study examining perinatal depression in the Women’s Interagency study reported no significant difference in the prevalence of depression symptoms between pregnant HIV-positive and negative women with rates of 44 and 50%, respectively. Similarly, Bonacquisti et al. (2014), found the same levels of depression (36%) in a corresponding group. Untreated depression in HIV-positive pregnant women, like other populations, can affect their quality of life, CD4 counts and accelerate disease progression (Ross et al., 2009). Having provided the context and information on adherence in general and particularly among HIV-positive women, the sections below provide an overview of the research setting for the study.

1.10

Guyana---Country Background

Guyana (Fig. 1.1), a former British colony (British Guiana) of about 83,000 sq. miles (215,000 sq. km) lies on the north-east section of South America. It is bounded by Venezuela to the north and north-west; Brazil to the south and south-west; Suriname to the east and the Atlantic

Fig. 1.1 Depiction of the health belief model (Source Derived from Guest, G. & Namey, E. (Eds.). (2015). Public health research methods. CA: Sage; Abraham, C., & Sheeran, P. (2005). The health belief model. In M. Conner & P. Norman (Eds.), Predicting health behaviour: Research and practice with social cognition models (2nd ed.). England: Open University Press)

16

D. VITALIS

Ocean in the east and north-east. The revised name “Guyana” originates from the Amerindian language meaning “land of many waters” since the country has a vast network of rivers and waterfalls (Ramnath, 1998). Although there are no known documents on who first discovered Guyana, the Amerindian tribes have been identified as the first inhabitants of the country. In 1492 Christopher Columbus was the first European explorer to discover Guyana. According to Dalton (1855), Guyana was subsequently invaded by the Dutch, Spanish, French and English, but finally came under British rule in July 1831. Guyana became a Republic when it gained its independence from the British on May 26, 1966. It is governed by an executive President using the Westminster style of government. During the colonial period the country was subdivided into three counties, namely Essequibo, Demerara and Berbice (Dalton, 1855). However, after independence it was restructured into 10 Administrative Regions (Table 1.3) with a local government system of Regional Democratic Councils (10); Neighbourhood Democratic Councils (65); Municipalities (6) and 76 Amerindian Village Councils (PAHO/WHO, 2009). Guyana being the sole English-speaking country on the South American continent aligned itself with the English-speaking Caribbean islands than the neighbouring Spanish/Portuguese countries. This union with the Caribbean was fermented in August 1973 by the Treaty of Chaguaramas which created the Caribbean Community, better known today as CARICOM (2014). CARICOM is an association of 15 Caribbean countries with a mandate to expand trade and economic activities within and outside the region; and to promote social, cultural and technological expansion for its citizenry (CARICOM, 2014). About three-quarters of Guyana’s land mass consist of rain forests. The majority of the population reside on the coastline of Regions 3, 4 and Table 1.3 Guyana’s 10 administrative regions No.

Region

No.

Region

1. 2. 3.. 4 5.

Barima-Waini Pomeroon-Supenaam West Demerara-Essequibo Islands Demerara-Mahaica Mahaica-Berbice

6. 7. 8. 9. 10.

East Berbice-Corentyne Cuyuni-Mazaruni Potaro-Siparuni Upper Takutu-Upper Essequibo Upper Demerara-Upper Berbice

1

INTRODUCTION

17

6 with the bulk (43%) of the population in Region 4 (PAHO/WHO, 2009). It is a multi-ethnic society, and data from the 2012 census indicate a country with a population of 747,884 (GOG, 2019). The racial/ethnic breakdown included Indians (39.8%), Africans (29.2%), Mixed (19.9%), Amerindians (10.5%), Portuguese (0.26%), Chinese (0.18%), Whites (0.06%) and Other (0.03%) (GOG, 2019). The World Bank lists Guyana as an upper middle-income country with GNI per capita income of US$4460 (World-Bank, 2018). Its economy is based on a combination of agriculture (sugar, rice), forestry, fishing and extraction of precious minerals (gold, diamonds, manganese, bauxite). In 2015, ExxonMobil made its first discovery of oil off Guyana’s coast with projections of 4 billion barrels. By 2018, they had located a total of 9 oil reservoirs with the expectation of about 750,000 barrels of oil per day by 2025 (ExxonMobil, 2018; Visram, 2018). 1.10.1

Health System Overview

Guyana has a primary healthcare system. The Ministry of Health (MOH) has jurisdiction for the nation’s healthcare services, with the Regional Democratic Councils (RDC) coordinating care within their respective regions. The Regional Health Authority (RHA) Act in 2005 paved the way for decentralizing health services in the regions through the creation of about five health authorities (MOH, 2008). Region 6’s health authority was created in 2006, and is the only one of its kind to date (MOH, 2008). Almost a decade later it maintains a semi-autonomous management structure overseen by MOH and Central Government (USAID, 2011). Government health services are provided at a range of health facilities (Table 1.4) and are stratified by level based on the types of services and cadre of staff. The lowest level (Level 1) is the Health Post, primarily found in hinterland areas and staffed with Community Health workers, while the highest level (Level 5) is the National Referral Hospital in Georgetown with specialists and Registrars (GOG, 2009). Alongside the free public health services is a small network of private fee-based health sector facilities summarized in Table 1.5. While provision of health services on the coastal plain is relatively adequate, provision in the hinterland areas poses serious challenges due to geographical, infrastructure and human resource constraints, as highlighted by PAHO (PAHO/WHO, 2009, p. 8):

18

D. VITALIS

Table 1.4 Type of health facilities Level

Facility

Staff

Level 1

Health Post

Level 2A

Health Centre

Level Level Level Level

Health Centre (Poly Clinic) Cottage/District Hospital Regional Hospital National Referral Hospital

Community Health Worker and visiting Medex No doctor; registered nurse/midwife, nursing assistant, clerk Doctor/Medex, plus Level 2A staff Doctor and/or Medex GMOs, Registrars, some specialists GMOs, Registrars, Specialists

2B 3 4 5

Other key challenges that impact on quality availability, and accessibility of health services, particularly in the more under-served hinterland regions include inadequate health workforce, weak strategic planning and management processes, incomplete decentralization of health services, limited use of clinical protocols to support patient management, fragmented health information system, and limited use of available data for evidenced-based decision making and policy formulation.

To overcome these health challenges and inequities in the population, the Guyana government commissioned an updated National Health Sector Strategy (NHSS) 2008–2012, an extension of 2003–2007 National Health Plan (NHP), with the following key objectives: • • • •

Equitable distribution of health services Provision of high standards of care Consumer-friendly health services Monitoring and evaluation structures to ensure Government and health workers are liable to the public. 1.10.2

General Antenatal Services

Antenatal care in Guyana is grounded in the Safe Motherhood initiative designed to reduce morbidity and mortality among women of reproductive age. Its five components are preconception care, antenatal care, identifying high-risk pregnancies, safe delivery and postpartum care. The antenatal care package includes:

4 1 6 20 133 210 7 381

Specialist hospitals* National hospitals Regional hospitals District hospitals Health centres Health posts Private hospitals Total % total population

6

10

0 0 1 3 13 27 0 44 13.3

2 1 2 0 39 10 6 60 41.0

0 0 0 2 15 1 0 18 7.1

2 0 1 2 28 4 1 38 19.7

0 0 1 2 12 16 0 31 5.4

0 0 0 4 3 42 0 49 2.5

0 0 1 1 12 20 0 34 6.0

2

0 0 0 2 3 22 0 27 2.0

7

1

5

3

4

Hinterland regions

Coastal regions

Note *includes geriatric and rehabilitation facilities Source Guyana Health system assessment 2010 (USAID, 2011)

National total

Distribution of health facilities by region

Type of facility

Table 1.5

0 0 0 2 5 16 0 22 0.8

8

0 0 0 2 3 52 0 57 2.1

9

1 INTRODUCTION

19

20

D. VITALIS

• • • • •

Screening for Hb, grouping, Rh factor, VDRL and HIV Treatment for intestinal parasites Tetanus toxoid vaccine Iron and folic acid supplementation Routine screening of blood pressure, pulse and urine testing for sugar and protein • Full body physical examination • Measurement of the height of fundus, checking position of foetus and monitoring of foetal heart sounds • Referrals to an obstetrician/gynaecologist for high-risk conditions. Women with normal pregnancies are seen monthly for up to 31 weeks; bimonthly from 32 to 36 weeks and weekly from 36 weeks until delivery. It should be noted that the HIV-positive woman is not considered high risk solely based on her status and is managed according to the normal visit schedule. Although MCH policy indicates that all pregnant women should be seen by a doctor at 36 weeks, this does not occur at all sites, particularly in the hinterland regions due primarily to human resource constraints. Women with high-risk pregnancies from these locations are usually evacuated to city public health facilities where they remain until delivery. The public health sector in Guyana is the main provider of healthcare services with a small percentage of persons accessing care from private health facilities. World Bank statistics indicate that 91% of pregnant women received prenatal care in 2014 (WB, 2014a). From 2005, the annual number of live births has been approximately 15,000 (MOH, 2011a). Table 1.6 lists other key indicators from the WB for 2009–2011 (WB, 2014b, 2015).

1.11

HIV and AIDS in Guyana

Guyana identified its first AIDS case in 1987 (MOH et al., 2006). As there were no systems or infrastructure in place, samples were diagnosed by the Caribbean Epidemiology Centre (CAREC), a specialized laboratory and epidemiology agency in Trinidad and Tobago affiliated with the Pan American Health Organization (PAHO). By 1989, a national AIDS programme was established at the Ministry of Health (MOH). Subsequently, funding from the European Union (EU) and PAHO/WHO assisted with the creation of the Genito-urinary Medicine (GUM) clinic,

1

INTRODUCTION

21

Table 1.6 Key health and socio-economic indicators Indicator 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11.

Crude birth rate (per 1000 people) Fertility rate, total (births per woman) Contraceptive prevalence (15–49 years) Life expectancy at birth (female) Life expectancy at birth (male) Pregnant women receiving prenatal care Births attended by skilled healthcare staff Maternal mortality ratio (per 100,000 live births) Mortality rate, infant (per 1000 live births) Mortality rate, under-5 (per 1000 live births) Health expenditure per capita (US$)

2009

2011

22 2.7 43% 68 63 92% 92% 270 31 38 $173

21 2.6 Not available 69 63 Not available Not available 280 (2010) 30 36 $200

the National Laboratory for Infectious Disease (NLID) and the National Blood Transfusion Service (NBTS) to aide in the prevention and control of HIV and AIDS, and other sexually transmitted diseases (MOH, 2012; MOH et al., 2006). To comprehensively address this emergent disease, the Guyana Government in 1992 commissioned the National AIDS Program Secretariat (NAPS) with a mandate to coordinate and monitor measures to combat the epidemic (MOH, 2012; MOH et al., 2006). Oversight for the national response was provided by the National AIDS Committee (NAC) in 1992 and in 2005 the Presidential Commission on HIV and AIDS (MOH, 2012; MOH et al., 2006). 1.11.1

Epidemiology of HIV and AIDS

HIV disease was ranked as the 6th cause of death in Guyana (MOH, 2009). Cases have increased over the years with 9473 HIV cases and 1899 AIDS cases reported to the MOH during 2002–2011 (MOH, 2012). The epidemic is considered to be generalized with an HIV prevalence of 1.7% among the 15–49 age group (WHO, 2017). The primary mode of transmission is heterosexual sex with more females contracting HIV than males (Table 1.7) at a rate of 50.7 and 45.4%, respectively (MOH, 2012). Over the years, the majority of HIV cases have occurred in Region 4, contributing to 71.5% and 70.8% of the cases in 2010 and 2011, respectively. While Region 3 held the second highest rate in 2010 (10.7%), this shifted to Region 5 (9.0%) in 2011. The capital city Georgetown

22

D. VITALIS

Table 1.7 Reported HIV cases by gender (2001–2011) Year

Male

Female

Unknown

Total

2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 Total

174 (42.5%) 301 (49.5%) 339 (44.5%) 368 (44.0%) 325 (41.6%) 591 (47.0%) 422 (42.5%) 446 (46.5%) 600 (51.0%) 449 (43.2%) 432 (44.3%) 4447 (45.4%)

226 (55.3%) 268 (44.1%) 368 (48.3%) 408 (48.7%) 421 (53.8%) 626 (49.8%) 531 (53.5%) 490 (51.1%) 567(48.2%) 547 (52.6%) 517 (53.2%) 4969 (50.7%)

9 (2.2%) 39 (6.4%) 55 (7.2%) 61 (7.3%) 36 (4.6%) 41 (3.3%) 40 (4.0) 23 (2.4%) 9 (0.8%) 43 (4.1%) 23 (2.4%) 379 (3.9%)

409 608 762 837 782 1258 993 959 1176 1039 972 9795

Table 1.8 Proportion of HIV cases, 2009–2011 Region

TOT population

% Population

2009 % HIV cases

2010

2011

Region 1 Region 2 Region 3 Region 4 Region 5 Region 6 Region 7 Region 8 Region 9 Region 10 Unknown Total

24,275 49,253 103,061 310,320 52,428 123,695 17,597 10,095 19,387 41,112 0 751,223

3.2 6.6 13.7 41.3 7.0 16.6 2.3 1.3 2.6 5.5 0 100

0.9 2.6 10.6 56.3 2.7 9.9 2.4 0.5 0 3.1 10.8 100

0.6 1.3 10.7 71.5 2.6 7.4 1.6 0.3 0.3 2.5 1.3 100

0.8 4.1 2.7 70.8 9.0 2.8 4.9 1.1 0.4 0.1 3.3 100

(Region 4), is disproportionately affected since it accounts for 41.3% of the population, followed by Region 6 (16.6%), and Region 3 (13.7%). These three Regions account for 71.6% of the total population (MOH, 2011a, 2012). Although no reasons were proffered in official reports on the HIV trends seen below in Table 1.8, the author believes that Region 4 being the most populous one (41.3% population), coupled with the fact that persons from outlying regions would prefer to test there to

1

INTRODUCTION

23

avoid disclosure of their status in their small close-knit communities, due to high levels of stigma and discrimination. At the end of 2011, there were 19 (18 fixed, 1 mobile unit) HIV/AIDS treatment and care sites dispersed throughout the regions, with a total of 3432 persons on ARV medication; of the 3432 persons, 305 are being treated with 2nd line ARV regimen (MOH, 2012). 1.11.2

HIV Programmes and Policies

The Government of Guyana, through the NAPS established a comprehensive multi-faceted approach to the epidemic (MOH, 2012). NAPS have responsibility for the national HIV/AIDS response. All HIV/AIDS services accessed through the public health system are free-of-cost. Guyana’s national HIV/AIDS policy was tabled in Parliament in 1998 and subsequently updated in 2003 and 2006 (MOH, 2012). These revisions included plans to address stigma and discrimination and universal access to VCT and PMTCT. A national workplace policy was launched in 2009. The national HIV/AIDS response (Table 1.9) encompasses the following areas (MOH, 2011a, 2012). 1.11.3

Role of the Pan Caribbean Partnership Against HIV/AIDS (PANCAP)

The PANCAP was instituted in 2001 by the Heads of Government of CARICOM (PANCAP, 2019). This organization is responsible for the coordination and management of activities to stem the AIDS epidemic in the region. Working with civil society, private sector and other national/international organizations they have made significant gains in: health systems strengthening; care, treatment and support and reducing stigma and discrimination to achieve their vision of “an AIDS-free Caribbean” (PANCAP, 2019). 1.11.4

Prevention of Mother-to-Child Transmission of HIV (PMTCT)

Guyana’s PMTCT Programme has evolved over the years, from a pilot project at 11 health facilities within two regions in 2001, to a full-fledged national programme in 181 sites from a total of 326 health facilities in all ten regions by the end of 2011 (MOH, 2012).

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D. VITALIS

Table 1.9 Guyana’s HIV/AIDS policies and programmes Policies and programmes

Description

National Workplace Policy

Launched in 2009 to control and prevent HIV in the workplace; to protect HIV-positive workers against discrimination To ensure a safe blood supply; screening blood donors for infectious diseases and other blood anomalies; increasing the number of whole blood units from voluntary donors; training staff on needle-stick injuries, safe injections and disposal of sharps; quality control Expansion of VCT sites across the 10 regions, with mobile units for hinterland areas; VCT available at antenatal clinics and delivery wards, and also within the private sector; National day of HIV testing was launched in 2007 and due to demand evolved into National week of HIV testing in 2008 Launched in 2008 in collaboration with the AIDS Institute, NYC Department of Health to ensure quality care and treatment for HIV-positive adults and children Established in 2008, and has the capacity to provide CD4 testing, viral load testing and DNA-PCR testing for HIV diagnosis in infants Launched in 2005 to provide palliative care to home-bound HIV-positive persons; training of all cadre of nurses in palliative care Launched in 2007; provides short-term nutritional support (food hampers) to PLHIV; supported by the private sector Collaboration with the private sector commenced in 2005 with a small number of business entities, which evolved to become the Guyana Business Coalition of HIV/AIDS in 2008; primary objective is to link employees of the private sector with HIV care, treatment, support and training The BCC strategy was launched in 2005 with a focus on reducing stigma and discrimination, encouraging abstinence and faithfulness; encourage early testing; and community participation in treatment and care; subsequent strategies included manoeuvring condom use for women; interventions for high-risk groups and most-at-risk groups (MARPS); IEC materials; TV and radio programmes; radio serial drama Merundoi (2006) to reinforce key messages in communities

National Blood Policy

VCT Programme

HEALTHQUAL

National Public Health Reference Laboratory (NPHRL) Home-based Care Programme

Food Bank

Private Sector Partnership Programme

Behaviour Change Communication (BCC)

(continued)

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Table 1.9 (continued) Policies and programmes

Description

Treatment and Care Programme

The first HIV and AIDS treatment guidelines were written in 2004 and updated in 2009 to reflect WHO guidelines; the National Care and Treatment Centre was launched in 2008, based in the capital city, Georgetown; other treatment sites have been established at regional hospitals and health care centres Commenced in 2005 to serve as a clearing house of information and provide psychosocial support to callers; not a toll-free number Providing health, nutrition and psychosocial care to caregivers and children regardless of HIV infection status Strengthening the capacity of communities to deal with the epidemic; training of peer educators, in/out of school youth and community leaders Unit within NAPS to monitor key HIV indicators; use data from national surveys to set targets and monitor programmes; routine data collection and analysis

Hotline

Orphans and Vulnerable Children

Community Mobilization

Monitoring and Evaluation

The piloting of Guyana’s PMTCT programme was initially implemented by the NAPS of the Ministry of Health (MOH). However, when expansion commenced in 2003, the programme was transferred to the Maternal and Child Health (MCH) Department of MOH, and has since been integrated into the services of that unit. 1.11.4.1 National PMTCT Programme and Policies The PMTCT protocol includes changes in HIV testing, infant feeding, ARV treatment and infant testing. In the early years of the programme, pregnant women were exposed to opt-in testing, whereby they were offered HIV testing and had the right to refuse. This was replaced in 2009 with opt-out testing in which women are tested routinely, with the option to decline (PMTCT programme policy). The first national antenatal survey conducted in 2006 found an HIV prevalence of 1.6% among pregnant women. Programme data indicates a gradual decrease in the prevalence among the antenatal population—1.3% (2007) and 1.1% (2011). Table 1.10 summarizes some key indicators (MOH, 2011a, 2012; Karim, 2014).

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Table 1.10 Key PMTCT indicators

1. 2. 3.

4. 5.

6.

7. 8.

9.

Indicator

2009

2010

2011

2012

PMTCT Sites Live births ANC women counselled and tested Counselling and testing uptake ANC women who received HIV test results Number of ANC women HIV-positive ANC HIV Prevalence Pregnant women receiving complete course of ART HIV-positive infants

157 14,584 11,776

165 14,528 11,441

181 12,518 13,490

183 11,778 12,697

89.8%

93.7%

94.8%

92.4%

10,046 (85.3%)

9829 (85.9%)

11,641 (86.3%)

10,580 (73.0%)

130

101

147

88

1.1%

0.9%

1.1%

0.7%

95.8%

87.3%

85.1%

80.0%

8 (8.9%)

11 (6.9%)

5 (1.9%)

3 (1.7%)

It should be noted that indicator number eight above titled “pregnant women receiving a complete course of ART” refers to data on ART (sdNVP and ART) received only from labour wards where ART drugs are available. In terms of infant feeding, women were initially given the option of exclusive breastfeeding from birth for a maximum of three months with rapid weaning, or exclusive formula feeding of the infant from birth with free infant formula until 18 months of age. The National HIV treatment guidelines recommends “the avoidance of all breastfeeding by HIV positive women” (MOH, 2011b, p. 84). Those who choose to breastfeed are advised to do so for no longer than three months and are either placed or continued on ARVs for that period. The NAPS annual report (MOH, 2011a) data revealed that out of 158 HIV-exposed babies on the labour ward, 152 (96.2%) were formula-fed, while 6 (3.8%) were breastfed. Diagnosis of the infant’s HIV status was based on antibody testing at 18 months of age until DNA-PCR testing was introduced in 2007. Initially, the DNA-PCR testing was outsourced to an overseas laboratory,

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but in 2010, was transferred to the National Public Health Reference Laboratory (NPHRL) which had developed the technical capacity to conduct such tests (MOH, 2012). Guyana’s national PMTCT programme currently includes the following services: • Opt-out HIV counselling and testing at antenatal clinics and select labour and delivery wards • Infant feeding counselling with free infant formula up to age 18 months for mothers choosing formula feeding • DNA-PCR testing of infants beginning at 6 weeks of age and a final rapid antibody test at 18 months • Cotrimoxazole prophylaxis for HIV-exposed infants • All HIV-positive women are placed on lifelong ART beginning the 2nd trimester irrespective of CD4 count. 1.11.4.2 Antiretroviral Therapy for PMTCT Up until 2004, antiretroviral medication for pregnant women consisted of a single dose, 200 mg tablet of Nevirapine (sdNVP) for the mother in established labour and a single dose of NVP syrup for the baby (2 mg/kg) within 72 hours of birth. Due to concerns about monotherapy, Nevirapine resistance, and new treatment guidelines from WHO, sdNVP was replaced with ART, as outlined in Table 1.11 (MOH, 2011b). Women who become pregnant while on ARVs were maintained on therapy, while ARV-naïve pregnant women commenced therapy in the second trimester. Women on ARVs solely to reduce MTCT could stop after delivery unless breastfeeding. Exposed infants now receive sdNVP 2 mg/kg and AZT 4 mg/kg for six weeks (MOH, 2011b). Guyana recently updated its ART treatment guidelines to include Option B+ (lifelong treatment, regardless of CD4 count) for HIV-positive pregnant women (MOH, 2014).

1.12

Study Sites

Participants were interviewed at 11 clinics within Regions 3, 4, and 6 described below. These were selected to represent the diverse ethnic and sociodemographic characteristics of Guyana. The majority of the population (41.3%) reside in Region 4 (GOG, 2002).

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Table 1.11 ARV regimen for HIV-positive pregnant women and exposed infants CD4 count

Primary regimen in order of preference

1st Trimester

If patient is on ART, evaluate for appropriateness of regimen If ARV-naïve, prepare for initiation in 2nd trimester (lab tests, adherence and other counselling) CTX prophylaxis CD4 < 350 1. TDF+FTC+EFV AZT+3TC+LPV/r (LPV/r will be 2. TDF+FTC+NVP used for women 3. AZT+3TC+EFV with previous 4. AZT+3TC+NVP exposure to sdNVP)

2nd and 3rd Trimester

CD4 > 350 ARV naïve in labour

HIV-exposed infant

Alternate regimen

1. 2. • •

TDF+FTC+EVF AZT+3TC+LPV/r AZT+3TC+EFV N/A sdNVP 200mg N/A Dimune (AZT 300mg +3TC 150mg) 3 hours after sdNVP • Repeat sdNVP if still in labour after 24 hours • Dimune twice daily for 6 weeks • sdNVP 2mg/kg at birth • AZT 4mg/kg twice daily for 6 weeks Prophylaxis must be given within 72 hours of birth to be effective

Source (MOH, 2011b)

1.12.1

West Demerara Regional Hospital Antenatal Clinic

The antenatal clinic is housed in the compound of the West Demerara Regional Hospital (WDRH) located in Region 3, West Coast Demerara. WDRH officially opened in 1983 with just two functioning units, a labour and delivery ward and an outpatient clinic, gradually increasing services to qualify as a Level 4 health facility in 1985, with a capacity of 225 beds. The antenatal clinic, established in 1985, currently has a staff complement of one-health visitor, one-midwife, one-nurse assistant and two-community health workers. PMTCT services were introduced in November 2003, while HIV care and treatment services for the general population commenced in 2002 (Karim, 2013).

1

1.12.2

INTRODUCTION

29

Dorothy Bailey Health Centre

The Dorothy Bailey Health Centre (DBHC) is in the capital city (Picture 1.1), Georgetown (Region 4). Initially founded as the Georgetown Municipality and Infant Welfare clinic in November 1931, it was subsequently renamed DBHC in 1967 in honour of the first female Mayor of Georgetown. At the time of its establishment, the primary purpose was to prevent morbidity in children less than one year old. Services have evolved over the years, and today DBHC is the largest of the four Georgetown municipal health centres and provides pre and postnatal care, family planning, infant and child health, school health, youth-friendly services, outpatient care, VCT, PMTCT, STIs including HIV treatment and care and pharmacy services. DBHC’s catchment area includes Werk-en-Rust, Wortmanville, Bourda, Lacytown, South Cummingsburg, Robbstown, Stabroek, Kingston, North Cummingsburg, Alberttown and Queenstown encompassing a total population of about 22,492. Despite its boundaries,

Picture 1.1 Dorothy Bailey Health Centre, Georgetown, Region 4

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D. VITALIS

DBHC also enrolls patients from outside its defined catchment area. Clinic staff includes six-midwives, one medex, two nurse assistants, one doctor, one programme nurse, two case navigators, one social worker/counsellor tester, one pharmacist, one phlebotomist, four clerks, one office assistant and one driver. DBHC was one of the first PMTCT sites launched in November 2001, with comprehensive HIV treatment and care services introduced in October 2007 (Stewart, 2013). 1.12.3

Campbellville Health Centre

Campbellville Health Centre, located in Georgetown, Region 4 was built in the 1940s, and catered primarily for maternal and child health. This centre has now evolved into a poly-health clinic providing a comprehensive package of services, and is staffed by one-public health nurse, one-registered nurse, two-midwives, one-nurse assistant, three-doctors, one-VCT counsellor tester, two-dental technicians, one-laboratory assistant, two-pharmacy assistants and three-clerical staff. It was also one of the first sites to provide PMTCT services in 2001 and commenced HIV treatment and care services in May 2014. In January 2012, the Georgetown Public Hospital Corporation (GPHC) acquired the management of the clinic from the Ministry of Health (Corry, 2014; Khan, 2014). 1.12.4

Georgetown Public Hospital Corporation (GPHC) OB/GYN Clinic

The Georgetown Public Hospital, a Level 5 health facility, is the national referral hospital in the country. Located in Georgetown, Region 4, it has a rich history dating back to the early nineteenth century. Built in 1805 as a hospital for seamen, GPHC underwent several renovations and name changes to become a 450 bed Seamen’s Hospital in 1839. The GPHC obstetrics and gynaecology clinic provides high-risk antenatal care services, as well as routine gynaecological care. PMTCT services began in 2001. Persons in need of HIV treatment are referred to the National care and treatment clinic housed in the GPHC compound. Services are provided by a wide range of staff, inclusive of midwives and consultants (Corry, 2014; Khan, 2014).

1

1.12.5

INTRODUCTION

31

Beterverwagting Health Centre

Beterverwagting Health Centre (BVHC) located on the East Coast Demerara (Region 4), was initially opened in 1933 and rebuilt in 1998. It currently provides services to a population of about 10,000 residents on East Coast Demerara from Le Resouvenir on the West to Mon Repos on the East. Services include pre and postnatal care, child health, outpatient care, environmental health, dental care, sexual and reproductive health, chronic disease care, pharmacy services, VCT, PMTCT and HIV treatment and care. Staff at the facility include one-doctor, one-staff nurse/midwife, two-nurse assistants, one-pharmacy assistant, one-community health worker, one-clinic attendant, one-VCT counsellor tester, one-social worker, one-dentist and two-environmental officers. PMTCT services were initiated in January 2004, while HIV treatment services were launched in October 2004 (Lowe, 2013). 1.12.6

East La Penitence Health Centre

The East LaPenitence Health Centre, located in Georgetown was officially launched in September 2009. It provides a comprehensive menu of services, inclusive of chronic non-communicable disease care, maternal and child health and HIV care and treatment. Serving a population of 12,470, its catchment area encompasses Costello Housing scheme; West, East and NE LaPenitence and East Ruimveldt. Staff at the site include one doctor, medex, midwife, dentex, receptionist, pharmacy assistant, patient care assistant, outreach worker; two clinic attendants and three nursing assistants. HIV care and treatment services commenced in October 2011 (Sears, 2013). 1.12.7

Davis Memorial Hospital

Davis Memorial, a Seventh-day Adventist Hospital in Georgetown, has been providing invaluable service to the community since 1967. The Positively United to Support Humanity (PUSH) project provides comprehensive care and treatment to persons who are HIV-positive. Initially funded by Catholic Relief Services (CRS) in 2006, the HIV programme is currently supported with a grant by the United States President’s Emergency Fund for AIDS Relief (PEPFAR). The overall objective of this five-year project is to provide HIV and AIDS care, treatment and support

32

D. VITALIS

within a faith-based environment. Davis Memorial is one of seven private medical institutions in the country, and has no boundaries in its mission of “service to humanity” (Chan, 2014; DMHAC, 2014). 1.12.8

St. Joseph Mercy Hospital

In June 2003, the management of St. Joseph Mercy Hospital established Stemming the Tide programme in collaboration with the Ministry of Health to reduce mother-to-child transmission given the high rates of HIV infection in women of reproductive age. Catholic Relief Services provided funding in 2004 which enabled expansion of the services and ART was donated by the Guyana Government. In 2012, the hospital joined forces with Davis Memorial’s PUSH project to continue providing comprehensive HIV care and treatment services to women, their partners and HIV-exposed or HIV-positive children. St. Joseph Mercy Hospital is operated by the Roman Catholic Church and managed by the Sisters of Mercy. It was built in the Kingston community of Georgetown, and began providing services in August 1945 (Sealey, 2014; SJMH, 2014). 1.12.9

Cumberland Health Centre

Cumberland Health Centre, East Canje Berbice (Region 6) began providing services to the community since the 1960s. The clinic delivers a range of health services, inclusive of HIV care to a population of about 30,000. PMTCT commenced in February 2002. The centre is staffed with a visiting doctor, Medex, social worker, phlebotomist, midwife, nurse assistant, community health worker, environmental health inspector and clinic attendant (Christopher, 2014). 1.12.10

Bohemia Health Centre

Bohemia Health Centre (population approximately 20,000), located on the Corentyne Coast, Berbice, Region 6 (Picture 1.2) was also established in the 1960s, and provides similar services as Cumberland Health Centre. Staff include a visiting doctor, PMTCT counsellor and phlebotomist; a midwife and clinic attendant. PMTCT services were launched in November 2007 (Christopher, 2014).

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INTRODUCTION

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Picture 1.2 Bohemia Health Centre, Berbice, Region 6

1.12.11

New Amsterdam Family Health Clinic

New Amsterdam Family Health Clinic, New Amsterdam, Berbice (Region 6) provides comprehensive health services inclusive of maternal and child health, chronic disease care, tuberculosis, and HIV and AIDS care and treatment. To adequately address the health needs of its community (approximately 30,000), the polyclinic is staffed with a doctor, health visitor, Medex, midwives, other nursing cadres, clerk, social worker, outreach worker, pharmacy assistant and clinic attendant. Patients in this Region can access their HIV treatment services at this facility. PMTCT commenced in September 2005 (Christopher, 2014).

1.13

Guiding Frameworks for This Study

The sections below describe the theoretical and methodological frameworks that guided the study, followed by the overall purpose and associated research questions.

34

D. VITALIS

1.13.1

Theoretical Framework

Adherence to ART in pregnancy is essential to achieve positive health outcomes for mother and infant, and requires an understanding of the health-related, behavioural and psychosocial factors contributing to regimen adherence or non-adherence. The Health Belief Model (HBM), a long-standing and popular psychological and behavioural model, has been used to understand adherence in chronic health diseases, and now HIV (Barclay et al., 2007; Malcolm et al., 2003; Reynolds et al., 2004), but has not been incorporated in studies of HIV-positive pregnant women, and was the theoretical approach to identify and understand the factors contributing to ART adherence. The Health Belief Model originated in the 1950s by a group of social scientists from the United States Public Health Service who were concerned about the routine non-acceptance of disease prevention measures, such as screening tests for early identification of disease, despite the fact that the tests were either free or minimal cost (Janz & Becker, 1984; Rosenstock, 1974). This model for understanding psychological and behavioural factors that impact health behaviour has since been adopted in the public health arena to determine factors that may play a role in adherence (Malcolm et al., 2003; Williams & Manias, 2014). The HBM (Fig. 1.1), is a well-established health behaviour theoretical framework for understanding and informing behaviour change interventions, including HIV (Barclay et al., 2007; Malcolm et al., 2003; Reynolds et al., 2004; Turner et al., 2007). HBM dates back to public health circa 1950s (Rosenstock, 1974). HBM constructs can be used to determine the motivation and control of unhealthy behaviours. It is premised on the hypothesis that behaviour change will occur if persons believe they are personally vulnerable and at-risk for negative consequences (Champion & Skinner, 2008; Janz & Becker, 1984; Rosenstock, 1974). As it pertains to antiretroviral medication adherence, the HBM envisions that adherence is possible if there is an understanding of the severity of HIV infection, positive effects of therapy and adverse effects of terminating treatment (Blackwell, 1992; Janz & Becker, 1984). Key components of the HBM include: (1) perceived severity of the disease; (2) perceived susceptibility of contracting disease or advanced disease; (3) perceived benefits of positive outcomes; (4) perceived barriers

1

INTRODUCTION

35

to uptake of healthy habits; (5) cues to action or facilitators and (6) selfefficacy or confidence in one’s ability (Abraham & Sheeran, 2005; Guest & Namey, 2015). Perceived severity pertains to the ramifications of untreated ill health; perceived susceptibility relates to risk of contracting disease; perceived benefits includes positive beliefs about taking action for healthy outcomes; perceived barriers pertains to personal challenges that can be encountered in adopting healthy behaviours; cues to action include facilitators of an act and self-efficacy refers to self-confidence in one’s capacity to change behaviour (Abraham & Sheeran, 2005; Guest & Namey, 2015). 1.13.2

Use of the HBM to Understand Adherence

The HBM has been utilized to predict behaviours such as health screenings, exercise, smoking, alcohol use and adherence to medication for chronic diseases, such as cancer (DiMatteo et al., 1993), diabetes (Brownlee-Duffeck et al., 1987), hypertension (Hershey et al., 1980) and recently HIV (Barclay et al., 2007). Turner et al. (2007) investigated the feasibility of the HBM to determine adherence among persons with multiple sclerosis. They found that the HBM predicted adherence and that perceived benefits were associated with at least 80% adherence. Moreover, demographic variables such as age, gender and race did not impact adherence. Barclay et al. (2007) study on predictors of antiretroviral adherence utilized some HBM constructs to predict adherence behaviour. Results indicated that health beliefs, attitudes and self-efficacy were indicative of adherence. In addition, older age (50 and above) was linked with higher medication adherence. Despite the popularity of this model, it has been the subject of some criticism in these areas: (1) the connection between the variables have not been fully explained and (2) there are no guidelines governing combination of the variables (Armitage & Conner, 2000; Munro et al., 2007); (3) HBM does not take into consideration other variables such as how approval from others can impact behaviour and (4) it does not differentiate between the rankings, importance and connections among the constructs (Abraham & Sheeran, 2005). Despite these concerns, the HBM has been successful in determining adherence behavior (Janz & Becker, 1984; Kelly et al., 1987; Muma et al., 1995). A decade of HBM studies (1974–1984) has validated its

36

D. VITALIS

utility for understanding health-related decisions (Janz & Becker, 1984). However, the authors recommended additional research on the tools used for measuring HBM constructs. Although the HBM theoretical framework has been utilized among several HIV-positive populations, it has not been used among HIVpositive pregnant and postpartum women. As such, a key component of this study will be to examine the usefulness of this theoretical model to predict adherence behaviour within this group. 1.13.3

Research Paradigm

Creswell (2014) defines Epistemology as a framework or collection of ideas or beliefs guiding the methodological approach for research. Thus, researchers can have different viewpoints about their world resulting in various epistemologies or paradigms (Green & Thorogood, 2010). These research paradigms or theoretical approaches influence the type of research design (quantitative, qualitative, mixed methods) used. As such, they also determine the type of data collection and analysis used. Some of these paradigms include Post-positivism, Constructivism, Transformative approaches and Pragmatism (Creswell, 2014). It is possible to have two or more research paradigms guiding the same study (Sandelowski, 2000). Post-positivism originated in the nineteenth century from writers like Mill and Durkheim. It is aligned with the scientific method or quantitative research. Proponents of this view believe in the notion of causality and that outcomes should be measured, and hypotheses tested to be able to either reject or accept them. Constructivism (social constructivism) is aligned with the work of Mannheim, Berger and Luekmann in the 1960s, and focuses on qualitative research. Social constructivists try to understand the meaning behind the individual’s experiences using open-ended dialog. The objective is to decipher the individual from his/her perspective within its social, cultural and historical context. Transformativism—this approach emerged during the 1980s and 90s, influenced by writers such as Karl Marx and Adonis. This type of research investigates social inequalities of race, ethnicity, sexual orientation and other marginalized groups, with the objective of effecting change.

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Pragmatism is a research paradigm based on the work of Pierce, James, Meade and Dewey (Cherryholmes, 1992). Other researchers who have used a pragmatist approach include Patton (1990) and Morgan (2007). Pragmatism does not adhere to any one worldview but utilizes any relevant approach (whether quantitative or qualitative) to address a given problem. As the backbone for mixed-methods studies, it allows the researcher wide latitude on data collection and analysis methods (Cherryholmes, 1992; Morgan, 2007). Using a mixed-methods research strategy allows the researcher to use both qualitative and quantitative methods either at the same time or separately (Creswell, 2009; Sandelowski, 2000) to better comprehend the research problem. For this study, the author will be guided by a pragmatist approach.

1.14

Rationale for the Study

Adherence rates vary widely in developed and developing countries. Few studies have examined adherence among HIV-positive women during pregnancy and postpartum, particularly the complex and myriad issues of demographic, social and psychological factors associated with HIV infection and treatment. If we hope to achieve the UNAIDS vision of diagnosing, treating and achieving viral suppression among 90% PLHIV by 2020, as well as worldwide efforts to eradicate the disease in infants and enhance the lives of their mothers (UNAIDS, 2014, 2015), we need to gain an understanding of the factors that affect women’s adherence with their ART regimens, to be able to provide them with appropriate treatment and support to safeguard their own health and that of future generations. To the author’s knowledge, there have been no studies to date examining those issues in Guyana or the wider Caribbean region. It is important to understand the factors affecting adherence among pregnant and postpartum women, since existing studies may not account for cultural and other local variations. The findings from this study will provide insight into the local situation and can inform policy and practice in Guyana and the wider Caribbean region.

38

D. VITALIS

1.15

Purpose of Study

The purpose of this mixed-methods study was to describe the nature and scope of ART treatment adherence among pregnant and postpartum women, and to determine the factors that may contribute to their adherence within Guyana’s context. The first phase entailed a systematic review of the literature to understand the global knowledge base on ART adherence and investigate any relevant studies from the region. The second phase entailed a series of empirical studies. The first study utilized in-depth interviews to explore the ART experiences of HIVpositive pregnant and postpartum women, to gain an understanding of adherence from their own perspective. Perspectives of their healthcare providers were also explored. Drawing from both the research literature and the findings from the in-depth interviews, a cross-sectional descriptive study of pregnant women was undertaken which included three sub-studies. The first investigated general adherence to pregnancy-related behaviours among HIV-negative and HIV-positive pregnant women; the second aimed to compare adherence to pregnancy-related behaviours with antiretroviral adherence among HIV-positive pregnant women. The final study aimed to investigate the efficacy of the Health Belief Model to understand and predict ART adherence among HIV-positive pregnant women. The use of a mixed-methods design allowed for a more comprehensive analysis of adherence rather than use of a single methodology. Triangulation of the findings from the qualitative and quantitative studies enhanced interpretation of the results (Creswell, 2014). The specific research aims contributing to the overall thesis objective are presented in Table 1.12. In the following chapter (Chapter 2), I present the results of a systematic review on adherence in HIV-positive pregnant and postpartum women using Liberati et al. (2009) guidelines for the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA).

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Table 1.12 Research questions and methodology Study aims

Research questions

Methodology

Chapter

1. To provide a systematic review of the global and regional literature on ART adherence to address questions on factors contributing to adherence among pregnant and postpartum women 2. To understand the ART adherence experiences of women living in Guyana

What are the factors contributing to ART adherence among HIV-positive pregnant and postpartum women

The PRISMA tool for systematic reviews and meta-analyses guided this review. Studies identified from seven electronic databases; Out of 6622 screened records, 18 studies were included in the final review Semi-structured interviews at five clinics (2 Regions) with 11 pregnant women, 13 postpartum women and 9 healthcare workers

2

Cross-sectional study; Interviewer-administered questionnaires at 12 primary care clinics (3 Regions) with 108 HIV-negative and 108 HIV-positive pregnant women

6

3. To examine general adherence to pregnancy health behaviours among HIV-negative and HIV-positive pregnant women

How do HIV-positive pregnant and postpartum women describe their ART experiences? How do healthcare providers describe the adherence behaviour of HIV-positive pregnant and postpartum women? What are the factors that contribute to adherence and non-adherence among pregnant and postpartum HIV-positive women? What are the levels of prenatal vitamin supplement knowledge and vitamin use among HIV-negative and HIV-positive pregnant women and do these differ between the two groups? What are the levels for other prenatal health behaviours (alcohol use, tobacco use and healthy nutrition) among HIV-negative and HIV-positive women, and do these differ between the two groups? What are the predictors of vitamin knowledge, vitamin use, alcohol use, tobacco use and healthy nutrition among HIV-negative and HIV-positive women?

3

(continued)

40

D. VITALIS

Table 1.12 (continued) Study aims

Research questions

Methodology

Chapter

4. To examine the factors contributing to pregnant women’s ART adherence

What are the levels of ART adherence among HIV-positive pregnant women? What are the relationship between the demographic, social, psychological, knowledge, and clinical factors and ART adherence? What is the relationship between vitamin adherence and ART adherence? What constructs of the Health Belief Model (HBM) as operationalized by the Adherence Determinants Questionnaire (ADQ) help understand and predict adherence

Cross-sectional study; Interviewer-administered questionnaires at 12 primary care clinics (3 Regions) with 108 HIV-positive pregnant women

7

See methodology in Study Aim No. 4

8

5. To investigate the utility of a theoretical model to understand and predict adherence among HIV-positive pregnant women

References Abraham, C., & Sheeran, P. (2005). The health belief model. In M. Conner & P. Norman (Eds.), Predicting health behaviour: Research and practice with social cognition models (2nd ed.). Open University Press. Achappa, B., Madi, D., Bhaskaran, U., Ramapuram, J. T., Rao, S., & Mahalingam, S. (2013). Adherence to antiretroviral therapy among people living with HIV. North American Journal of Medical Sciences, 5, 220–223. Alder, J., Fink, N., Bitzer, J., Hosli, I., & Holzgreve, W. (2007). Depression and anxiety during pregnancy: A risk factor for obstetric, fetal and neonatal outcome? A critical review of the literature. The Journal of Maternal-Fetal and Neonatal Medicine, 20, 189–209. Aliyu, M. H., Blevins, M., Audet, C. M., Kalish, M., Gebi, U. I., Onwujekwe, O., Lindegren, M. L., Shepherd, B. E., Wester, C. W., & Vermund, S. H. (2016). Integrated prevention of mother-to-child HIV transmission services, antiretroviral therapy initiation, and maternal and infant retention in care in rural north-central Nigeria: A cluster-randomised controlled trial. The Lancet HIV, 3, e202–e211. Allen, C. F., Simon, Y., Edwards, J., & Simeon, D. T. (2011). Adherence to antiretroviral therapy by people accessing services from non-governmental HIV support organisations in three Caribbean countries. West Indian Medical Journal, 60, 269–275.

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SJMH. (2014). St. Joseph Mercy Hospital medical services [Online]. Available: http://www.sjmh.org.gy/. Accessed March 2014. Starace, F., Massa, A., Amico, K. R., & Fisher, J. D. (2006). Adherence to antiretroviral therapy: An empirical test of the information-motivationbehavioral skills model. Health Psychology, 25, 153–162. Stewart, J. (2013). RE: Information about D. Bailey Clinic. Sturt, A. S., Dokubo, E. K., & Sint, T. T. (2010). Antiretroviral therapy (ART) for treating HIV infection in ART-eligible pregnant women. Cochrane Database of Systematic Review, CD008440. Taha, T. E. (2011). Mother-to-child transmission of HIV-1 in sub-Saharan Africa: Past, present and future challenges. Life Sciences, 88, 917–921. Taiwo, B. (2009). Adherence to antiretroviral therapy: The more you look, the more you see. Current Opinion in HIV and AIDS, 4, 488–492. Teshome, W., Belayneh, M., Moges, M., Endriyas, M., Mekonnen, E., Ayele, S., Misganaw, T., Shiferaw, M., Chinnakali, P., Hinderaker, S. G., & Kumar, A. M. (2015). Who takes the medicine? Adherence to antiretroviral therapy in Southern Ethiopia. Patient Preference and Adherence, 9, 1531–1537. Thorne, C., & Newell, M. L. (2004). Prevention of mother-to-child transmission of HIV infection. Current Opinion in Infectious Diseases, 17 , 247–252. Tsai, A. C., & Tomlinson, M. (2012). Mental health spillovers and the Millennium Development Goals: The case of perinatal depression in Khayelitsha South Africa. Journal of Global Health, 2, 10302. Türmen, T. (2003). Gender and HIV/AIDS. International Journal of Gynecology and Obstetrics, 82, 411–418. Turner, A. P., Kivlahan, D. R., Sloan, A. P., & Haselkorn, J. K. (2007). Predicting ongoing adherence to disease modifying therapies in multiple sclerosis: Utility of the health beliefs model. Multiple Sclerosis, 13, 1146–1152. Turner, B. J. (2002). Adherence to antiretroviral therapy by human immunodeficiency virus-infected patients. The Journal of Infectious Diseases, 185(Suppl 2), S143–151. Tweya, H., Feldacker, C., Ben-Smith, A., Harries, A. D., Komatsu, R., Jahn, A., Phiri, S., & Tassie, J. M. (2012). Simplifying ART cohort monitoring: Can pharmacy stocks provide accurate estimates of patients retained on antiretroviral therapy in Malawi? BMC Health Services Research, 12, 210. UNAIDS. (2011). Global HIV/AIDS response: Epidemic update and health sector progress towards universal access—Progress report 2011. UNAIDS. (2013). 2013 report on the global AIDS epidemic. UNAIDS. UNAIDS. (2014). 90–90–90—An ambitious treatment target to help end the AIDS epidemic [Online]. Available: http://www.unaids.org/sites/default/ files/media_asset/90-90-90_en_0.pdf. Accessed 27 May 2014. UNAIDS. (2015). 2015 progress report on the global plan towards the elimination of new HIV infections among children and keeping their mothers alive

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[Online]. Available: http://www.unaids.org/sites/default/files/media_asset/ JC2774_2015ProgressReport_GlobalPlan_en.pdf. Accessed 27 May 2016. UNAIDS. (2017). Ending AIDS Progress towards the 90–90–90 targets [Online]. Available: http://www.unaids.org/sites/default/files/media_asset/ Global_AIDS_update_2017_en.pdf. Accessed 10 Jan 2018. UNAIDS. (2018). UNAIDS data 2018 [Online]. Available: http://www.unaids. org/sites/default/files/media_asset/unaids-data-2018_en.pdf. Accessed 10 Jan 2018. UNICEF. (2012). Monitoring the situation of women and children: Prevent mother-to-child transmission of HIV [Online]. Available: http://www.childi nfo.org/hiv_aids_mother_to_child.html. Accessed 16 Feb 2014. UNWOMEN. (2017). Facts and figures: HIV and AIDS [Online]. Available: http://www.unwomen.org/en/what-we-do/hiv-and-aids/facts-and-fig ures. Accessed 10 Jan 2019. USAID. (2011). Guyana health system assessment 2010. Health Systems 20/20. Vaz, M. J., Barros, S. M., Palacios, R., Senise, J. F., Lunardi, L., Amed, A. M., & Castelo, A. (2007). HIV-infected pregnant women have greater adherence with antiretroviral drugs than non-pregnant women. International Journal of STD and AIDS, 18, 28–32. Vervoort, S. C., Grypdonck, M. H., de Grauwe, A., Hoepelman, A. I., & Borleffs, J. C. (2009). Adherence to HAART: Processes explaining adherence behavior in acceptors and non-acceptors. AIDS Care, 21, 431–438. Visram, T. (2018). How will Guyana deal with its oil windfall? [Online]. CNN Business. Available: https://money.cnn.com/2018/08/30/news/world/guy ana-exxon-oil/index.html. Accessed 10 Jan 2019. Wagner, G. J., & Rabkin, J. G. (2000). Measuring medication adherence: Are missed doses reported more accurately then perfect adherence? AIDS Care, 12, 405–408. Wall, T. L., Sorensen, J. L., Batki, S. L., Delucchi, K. L., London, J. A., & Chesney, M. A. (1995). Adherence to zidovudine (AZT) among HIV-infected methadone patients: A pilot study of supervised therapy and dispensing compared to usual care. Drug and Alcohol Dependence, 37 , 261–269. Walshe, L., Saple, D. G., Mehta, S. H., Shah, B., Bollinger, R. C., & Gupta, A. (2010). Physician estimate of antiretroviral adherence in India: Poor correlation with patient self-report and viral load. AIDS Patient Care and STDs, 24, 189–195. Watt, M. H., Maman, S., Earp, J. A., Eng, E., Setel, P. W., Golin, C. E., & Jacobson, M. (2009). “It’s all the time in my mind”: Facilitators of adherence to antiretroviral therapy in a Tanzanian setting. Social Science and Medicine, 68, 1793–1800.

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WB. (2014a). Pregnant women receiving prenatal care—World Development Indicators [Online]. World Bank. Available: https://data.worldbank.org/indica tor/SH.STA.ANVC.ZS?locations=GY. Accessed Dec 2020. WB. (2014b). World Development Indicators [Online]. World Bank. Available: http://data.worldbank.org/country/guyana. Accessed 26 Jan 2014. WB. (2015). Country data: Guyana [Online]. World Bank. Available: http:// www.worldbank.org/en/country/guyana. Accessed 20 Aug 2016. Wertheimer, B., Freedberg, K., Walensky, R., Yazdanapah, Y., & Losina, E. (2006). Therapeutic drug monitoring in HIV treatment: A literature review. HIV Clinical Trials, 7 , 59–69. WHO. (2010). Antiretroviral drugs for treating pregnant women and preventing HIV infection in infants: Recommendations for a public health approach. WHO. WHO. (2017). Prevalence of HIV among adults aged 15 to 49—Estimates by country [Online]. Available: http://apps.who.int/gho/data/node.main.622? lang=en. Accessed 10 Jan 2019. Williams, A., & Manias, E. (2014). Exploring motivation and confidence in taking prescribed medicines in coexisting diseases: A qualitative study. Journal of Clinical Nursing, 23, 471–481. Wood, S. A., Tobias, C., & McCree, J. (2004). Medication adherence for HIV positive women caring for children: In their own words. AIDS Care, 16, 909–913. World-Bank. (2018). Country profile, Guyana [Online]. World Bank. Available: https://databank.worldbank.org/data/views/reports/reportwidget.aspx?Rep ort_Name=CountryProfile&Id=b450fd57&tbar=y&dd=y&inf=n&zm=n&cou ntry=GUY. Accessed 12 Jan 2019. Zaers, S., Waschke, M., & Ehlert, U. (2008). Depressive symptoms and symptoms of post-traumatic stress disorder in women after childbirth. Journal of Psychosomatic Obstetrics and Gynaecology, 29, 61–71. Zimpel, R. R., & Fleck, M. P. (2014). Depression as a major impact on the quality of life of HIV-positive Brazilians. Psychology, Health and Medicine, 19, 47–58.

CHAPTER 2

Systematic Review of the Literature

2.1

Introduction

Adherence to antiretroviral therapy in pregnant and postpartum women is an important public health issue, since non-adherence can adversely affect maternal, foetal and infant health; perpetuate drug-resistant strains and risk vertical transmission (Ciambrone et al., 2006; Ickovics et al., 2002; Mepham et al., 2011; Vaz et al., 2007). Historically, adherence to prescribed medications in the general population have always been problematic (Dimatteo et al., 2007; Simek et al., 2012), and these challenges are no different for HIV-positive pregnant and postpartum women, who not only have to grapple with pregnancyrelated issues and child-rearing, but also this life-threatening, chronic incurable disease. Although mother-to-child transmission of HIV can be reduced to levels of 2% or less (WHO, 2010) with consistent and appropriate ART regimens during pregnancy, delivery and breastfeeding, some women are not adhering at the high levels needed to maintain viral suppression (Nachega et al., 2012). Moreover, research undertaken by Mellins et al. (2008) and Peltzer et al. (2011) indicate greater adherence during pregnancy and declining rates postpartum. Sustained adherence to ART is necessary for successful treatment outcomes, but this can be complicated by a combination of patient, treatment and health system-related factors. Treatment-related factors include © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 D. Vitalis, Adherence to Antiretroviral Therapy among Perinatal Women in Guyana, https://doi.org/10.1007/978-981-15-3974-9_2

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pill burden and adverse drug effects (Battaglioli-DeNero, 2007; Chesney, 2003); patient-related factors such as socio-economic issues, psychosocial and substance use and health system-related factors such as access and provider support (Battaglioli-DeNero, 2007; Poppa et al., 2004). Some of the facilitators and barriers to adherence in pregnant and postpartum women are quite similar to those in the general HIV population, with a key motivator for the women being the desire to have an HIV-negative healthy baby. Barriers identified in the literature are drug use, non-disclosure, pill burden, financial constraints and psychological issues of anxiety and depression (Duff et al., 2010; El-Khatib et al., 2011; Mellins et al., 2008). Facilitators of adherence include disclosure, social support, having other children, being pregnant and wanting an HIV-negative baby (Ciambrone et al., 2006; McDonald & Kirkman, 2011). Many studies have linked depression among HIV-positive pregnant women and non-adherence to ART (Kapetanovic et al., 2009; Nel & Kagee, 2013; Vyavaharkar et al., 2007). Some of the risk factors for depression among HIV-positive pregnant women are similar to those in the general and HIV-negative population and include guilt, stigma, poverty, lack of social support, past history of depression and drug use (Kapetanovic et al., 2009; Leigh & Milgrom, 2008; Rich-Edwards et al., 2006). Since depression can have such damaging effects on both the mother and child, it is important to assess the role of this psychosocial dimension on adherence during pregnancy and postpartum. Given its public health implications, adherence during the prenatal and postpartum period is an important and relevant research topic, to not only gain an understanding of the issues impacting adherence behaviours, but also if we aim to achieve the laudable UNAIDS goal of eliminating HIV infections in children and reducing maternal mortality.

2.2

Study Objective

The objective of this study was to provide a systematic review of the global and regional literature on ART adherence to address questions on the factors contributing to adherence among pregnant and postpartum women.

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Research Question

What are the factors contributing to ART adherence among HIV-positive pregnant and postpartum women in Guyana?

2.3 2.3.1

Methods Search Strategy

The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) tool for systematic reviews and meta-analyses (Liberati et al., 2009) guided the review. A systematic literature search was conducted for both qualitative and quantitative studies in both resource-rich and resource-constrained countries to determine among other things what research had been done in the field of adherence as it pertains to pregnant and postpartum women. There were no date limits on the searches, but studies were limited to those written in English which included the study population. Electronic databases included OVID Medline (1948–Present), OVID Embase (1980–Present), OVID PsycINFO (1806–Present), EBSCO CINAHL Plus (1984–Present), JSTOR (1995–Present), ISI Web of Science (1900–Present) and The Cochrane Library (1996–Present). Key individual journals such as AIDS Care (July 7, 2011), AIDS Patient Care & STDs (July 6, 2011), International Journal of STDs & AIDS (July 6, 2011), AIDS & Behaviour (July 5, 2011), Women & Health (July 5, 2011) and Social Science & Medicine (July 5, 2011) were also searched electronically. In addition, the reference section for selected studies from the electronic and hand searches above were screened for other relevant studies. Search terms included “HIV”, “AIDS”, “mother-to-child transmission”, “MTCT”, “PMTCT”, “ARV therapy”, “ART” and “medication adherence”. The search strategy for Medline is listed in Fig. 2.1, while searches for the other databases are listed in Appendix C.

2.4

Eligibility Criteria for the Systematic Review

The PICOS (participants, interventions, comparators, outcomes and study design) framework as advocated by the PRISMA Statement (Liberati et al., 2009) guided this systematic review process. Types of Studies: all types of designs (qualitative and quantitative) were considered since this was a scoping exercise to determine among

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Fig. 2.1 Medline search strategy

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other things what research had been conducted in the field of adherence as it pertains to pregnant and postpartum women. Types of Participants: participants were HIV-positive pregnant and postpartum women receiving antiretroviral therapy. Studies incorporating men and women or men only were excluded in keeping with the overall aim of the review. Types of Interventions: ART adherence and adherence to other health behaviour for reducing HIV transmission from mother to infant. Types of Outcome Measures: Primary outcomes were facilitators and barriers of adherence, measures of adherence, participants’ views, provider views, levels of adherence and infant’s HIV status, and secondary outcomes were quality of life, adverse events of non-adherence, morbidity and mortality. 2.4.1

Study Selection

The titles and abstracts identified from the PICOS search criteria were reviewed. If the abstract was not available, the full text was sought, and if unavailable, the study was excluded. The final step was to critically examine the full text of the remaining abstracts to determine final eligibility based on the inclusion criteria. Records, such as letters to the editor and commentaries were excluded from further review. Data was extracted using a modified data collection form designed using items from Table 7.3.a. of the Cochrane Handbook Version 5.1.0 (Higgins & Green, 2011). Key information (author, year, participants, methods, interventions, outcomes, and results) from each study was summarized on this form (Appendix D). 2.4.2

Review of Methodological Quality

This review resulted in both qualitative and quantitative studies and the author utilized the Critical Appraisal Skills Program (CASP) tool for qualitative studies (Solutions for Public Health (SPH) an NHS organization, England) and the Effective Public Health Practice Project (EPHPP) for quantitative studies from McMaster University, Canada recommended by the Cochrane Health Promotion and Public Health Field Guidelines (Armstrong et al., 2007).

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The EPHPP for quantitative studies has rating scales of Strong = 1; Moderate = 2; Weak = 3 for measuring selection bias (external validity), study design, confounders, blinding (detection bias), data collection methods and withdrawals and dropouts (attrition bias). After these individual ratings per component, a final overall rating is issued as follows. If the study has no “weak” grades, it is considered “Strong”; one “weak” grade, it is “Moderate” and at least two “weak” grades, it is ‘Weak’. The qualitative studies were assessed using the Critical Appraisal Skills Program (CASP), a 10-item tool for qualitative research (CASP, 2011). Information for each study was noted on the extraction form. This tool involves a review of Aims, Methods, Research Design, Sampling, Data collection, Reflexivity, Ethics, Data Analysis, Findings and Value. Although this qualitative tool did not have grading criteria, an overall assessment was made of the study as being “good”, “fair” or “poor” based on the number of “yes” responses.

2.5

Results

Searches of the electronic bibliographic databases yielded 881 studies, while hand searches of journals resulted in 5756 studies. Finally, ancestry searches (checking the references of included studies) retrieved 57 references for a grand total of 6694 research studies. 72 duplicate studies were eliminated for a balance of 6622 studies. After screening by title and abstract, 37 full-text studies were subjected to complete review, resulting in a final selection of 18 included studies as depicted in the PRISMA flow diagram in Fig. 2.2, adapted from Liberati et al. (2009, p. 4). 2.5.1

Characteristics of Excluded Studies

Although the 19 excluded studies dealt with adherence to ART, the study population did not include HIV-positive pregnant and/or postpartum women. The studies were conducted in USA (11), UK (1), Africa (3) and other (4) countries.

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Fig. 2.2 Study selection flow diagram

2.5.2

Characteristics of Included Studies

The 18 studies which satisfied the eligibility criteria for inclusion were conducted in USA (8), Africa (7), Australia (1), Brazil (1) and Puerto Rico (1). None of the studies were randomized control trials (RCT). Key characteristics of the studies are discussed below:

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2.5.2.1 Participants Participants ranged in age from 12 to 42 years. Seven of the studies were conducted in Africa, while the eight studies in the USA were primarily among African Americans, Hispanics and Whites. Participants were HIVpositive pregnant or postpartum women or HIV-positive women with young children. Studies were conducted at clinics and/or hospitals managed by governments or universities. 2.5.2.2 Interventions Adherence to ARVs was measured by self-reports (Albrecht et al., 2006; Bardeguez et al., 2008; Bii et al., 2007; Cohn et al., 2008; Delvaux et al., 2009; Peltzer et al., 2010), pill counts (Mepham et al., 2011), MEMS caps (Ickovics et al., 2002), blood & urine assays (Kirsten et al., 2011), pharmacy or Medicaid claims (Laine et al., 2000; Turner et al., 2000) and multiple methods (Demas et al., 2005; Mellins et al., 2008; Vaz et al., 2007; Wilson et al., 2001). Three studies used in-depth interviews and focus group discussions to highlight the personal perspectives or experiences of the women. Other key variables considered were sociodemographics, drug/alcohol use, mental health/depression, social support and disclosure. 2.5.2.3 Outcomes The primary outcome of adherence was assessed with different criteria and measurements in the various studies. Measures of adherence included good adherence, with a cut-off rate greater than or equal to 95% (Mepham et al., 2011); recent and extended adherence (Cohn et al., 2008) and complete adherence—taking all ARVs over the past 4 days (Wilson et al., 2001). 2.5.2.4 Barriers to Adherence Major barriers to adherence included depression (Mellins et al., 2008; Turner et al., 2000), non-disclosure of HIV status (Ciambrone et al., 2006; Delvaux et al., 2009; Duff et al., 2010), substance use (Cohn et al., 2008), safety issues/concern for foetus’s health (McDonald & Kirkman, 2011; Mellins et al., 2008; Peltzer et al., 2010) and young age of mother (Bii et al., 2007; Kirsten et al., 2011; Laine et al., 2000). Lack of finances, stigma, fear of violence and lack of self-efficacy were other contributors to non-adherence.

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2.5.2.5 Facilitators of Adherence Major facilitators of adherence were social support from family/friends/partners (Ciambrone et al., 2006; Demas et al., 2005), concern for the foetus/pregnancy (Ciambrone et al., 2006; Mellins et al., 2008; Vaz et al., 2007), disclosure to family/friends (Demas et al., 2005; Kirsten et al., 2011) and simplified pill regimen (Vaz et al., 2007). Other variables such as older age of the mother, religion, not using drugs/alcohol and not missing prenatal vitamins were more likely to contribute to good adherence. Demographic variables such as ethnicity, marital status (Demas et al., 2005) were not associated with adherence.

2.6

Included Studies---Quantitative 2.6.1

EPHPP Guidelines

None of the studies received a “strong” rating as per the EPHPP guidelines1 (Appendix C); four (Cohn et al., 2008; Demas et al., 2005; Kirsten et al., 2011; Peltzer et al., 2010) were considered “moderate” and the remaining eleven (Albrecht et al., 2006; Bardeguez et al., 2008; Bii et al., 2007; Delvaux et al., 2009; Ickovics et al., 2002; Laine et al., 2000; Mellins et al., 2008; Mepham et al., 2011; Turner et al., 2000; Vaz et al., 2007; Wilson et al., 2001) were “weak”. 2.6.2

Levels of Adherence

Adherence varied across studies. In the prenatal period it was as low as 34% (Laine et al., 2000), with significant decline in one study to 21% in the postpartum period (Vaz et al., 2007). 2.6.3

Factors Impacting Adherence

There was also a range of factors affecting adherence. Use of illegal drugs, not taking prenatal vitamins (Cohn et al., 2008); no support systems (Peltzer et al., 2010), perception that drugs were harmful

1 The global rating for each article was based on the following grading system: strong (no weak ratings); moderate (one weak rating) and weak (two or more weak ratings).

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(Wilson et al., 2001), and depression (Turner et al., 2000) were predictors of poor adherence, while disclosing HIV status to family/friends (Kirsten et al., 2011) had a positive influence on adherence.

2.7

Included Studies---Qualitative 2.7.1

CASP Guidelines

Three qualitative studies (Ciambrone et al., 2006; Duff et al., 2010; McDonald & Kirkman, 2011) satisfied the inclusion criteria, and received a “good” rating using the Critical Appraisal Skills Program (CASP) tool (Appendix D). All had comprehensive aims and appropriate design. Factors affecting adherence both negative and positive were visible during and after pregnancy. Some of the facilitators identified included concern for health of the new-born/infant (Ciambrone et al., 2006; McDonald & Kirkman, 2011), and support from family and friends (Ciambrone et al., 2006). 2.7.2

Barriers to Adherence

Barriers highlighted were: (1) issues around daily living (Ciambrone et al., 2006); (2) non-disclosure of HIV status (Ciambrone et al., 2006; Duff et al., 2010); (3) financial constraints inclusive of high cost of transportation, poverty, dependence on partner (Duff et al., 2010); (4) stigma (Duff et al., 2010; McDonald & Kirkman, 2011); (5) health system issues, such as long waiting periods for care (Duff et al., 2010); (6) concerns about safety of the ARV (McDonald & Kirkman, 2011) and (7) being responsible for taking care of others such as children and family (Ciambrone et al., 2006). 2.7.3

Women’s Experiences with Adherence

These three qualitative studies provided an opportunity to understand the experiences of the women from their own perspective. Women were concerned about the teratogenic effects of the medication on their offspring (Ciambrone et al., 2006) and their poor adherence at times stemmed from their innate desire to protect their children from harm. This was also fuelled by limited or no information being provided to women about the drugs.

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Some women felt that providers only saw them as a disease to be cured and not a person with a disease (McDonald & Kirkman, 2011). Their views and input into the treatment process were not taken into consideration, resulting in poor self-esteem, adversely affecting adherence. Concern for one’s children served as a facilitator for some women and a barrier for others (Ciambrone et al., 2006; McDonald & Kirkman, 2011). Women who thought that the drugs would be toxic to the foetus and infant were poor adherers, while those who thought that there would be a reduction in transmission to their offspring, and women who wanted to remain in good health to care for themselves and their children were better adherers. Non-disclosure of HIV status to family and friends (Ciambrone et al., 2006; Duff et al., 2010) served as a barrier, since women were unwilling to take medication in their presence.

2.8

Summary

The objective of this systematic review was to determine what studies had been conducted on the facilitators and barriers of ART adherence among HIV-positive pregnant women globally and specifically in Guyana and the wider Caribbean region, and is the first such review of this nature (Table 2.1). Few studies were found which satisfied the primary inclusion criterion—pregnant and postpartum women. Moreover, studies were predominantly carried out in developed countries, as opposed to developing or resource-poor countries. Eight and seven studies were conducted in the USA and Africa respectively, while Brazil, Australia and Puerto Rico contributed one study each. There were no studies identified from Guyana or the Caribbean region. In addition, studies in the USA are primarily conducted among pregnant drug-using women making it difficult to generalize to non-drug-using populations. Some of the facilitators identified included concern for health of the new-born/infant and/or for one’s children (Ciambrone et al., 2006; McDonald & Kirkman, 2011), and support from family and friends (Ciambrone et al., 2006). Barriers highlighted were: (1) issues around daily living (Ciambrone et al., 2006); (2) non-disclosure of HIV status (Duff et al., 2010); (3) financial constraints inclusive of high cost of transportation, poverty, dependence on partner (Duff et al., 2010); (4) stigma (Duff et al., 2010; McDonald & Kirkman, 2011); (5) health system issues, such as long waiting periods for care (Duff et al., 2010); (6)

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Table 2.1 Key findings from systematic review Facilitators of ART adherence Concern for the health of new-born or other children Support from family/friends/partner Simplified ART regimen Barriers to ART adherence Non-disclosure of HIV status Financial constraints in general and poverty in particular Stigma and discrimination Health system issues such as long waiting time for care Concerns about safety of ART drugs Caretaking responsibilities for family and children Mental health issues, such as depression Other findings Few studies (18) identified which met inclusion criteria No studies identified from the Caribbean and Guyana Pregnancy emerged as a better period of adherence Definitions, measurements and levels of adherence varied across studies

concerns about safety of the ARV (McDonald & Kirkman, 2011) and (7) being responsible for taking care of other family members (Ciambrone et al., 2006).

2.9

Discussion

This review process highlights the fact that in addition to the few studies on pregnant and postpartum women, adherence is a complex issue and that there is still no consensus on its measurement and definition. Both the observational and qualitative studies identified myriad factors from the individual to the environment that affects a woman’s ability to adhere to her medications. Both the measurement and levels of adherence varied across the studies, making comparisons difficult. However, adherence was reported as being better during pregnancy than postpartum. This finding points to a lack of data in resource-poor settings where the majority of HIV-positive women reside making it difficult to generalize results to this population, but also to the different types of healthcare systems. This systematic review provided an overview of the factors affecting adherence among HIV-positive women in general in both rich and low-to-middle-income countries. The following chapter (Chapter 3)

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will provide a detailed account of the women’s experiences with ART adherence in Guyana.

References Albrecht, S., Semrau, K., Kasonde, P., Sinkala, M., Kankasa, C., Vwalika, C., Aldrovandi, G. M., Thea, D. M., & Kuhn, L. (2006). Predictors of nonadherence to single-dose nevirapine therapy for the prevention of mother-to-child HIV transmission. Journal of Acquired Immune Deficiency Syndromes, 41, 114–118. Armstrong, R., Waters, E., Jackson, N., Oliver, S., Popay, J., & Shepherd, J. (2007). Guidelines for systematic reviews of health promotion and public health interventions. Version 2. Melbourne University. Bardeguez, A. D., Lindsey, J. C., Shannon, M., Tuomala, R. E., Cohn, S. E., Smith, E., Stek, A., Buschur, S., Cotter, A., Bettica, L., Read, J. S., & Team, P. P. (2008). Adherence to antiretrovirals among US women during and after pregnancy. Journal of Acquired Immune Deficiency Syndrome, 48, 408–417. Battaglioli-Denero, A. M. (2007). Strategies for improving patient adherence to therapy and long-term patient outcomes. Journal of the Association of Nurses in AIDS Care, 18, S17–22. Bii, S. C., Otieno-Nyunya, B., Siika, A., & Rotich, J. K. (2007). Self-reported adherence to single dose nevirapine in the prevention of mother to child transmission of HIV at Kitale District Hospital. East African Medical Journal, 84, 571–576. CASP. (2011). Critical Appraisal Skills Programme [Online]. CASP. Available: http://media.wix.com/ugd/dded87_29c5b002d99342f788c6ac670e4 9f274.pdf. Accessed July 2011. Chesney, M. (2003). Adherence to HAART regimens. AIDS Patient Care STDS, 17 , 169–177. Ciambrone, D., Loewenthal, H. G., Bazerman, L. B., Zorilla, C., Urbina, B., & Mitty, J. A. (2006). Adherence among women with HIV infection in Puerto Rico: The potential use of modified directly observed therapy (MDOT) among pregnant and postpartum women. Women and Health, 44, 61–77. Cohn, S. E., Umbleja, T., Mrus, J., Bardeguez, A. D., Andersen, J. W., & Chesney, M. A. (2008). Prior illicit drug use and missed prenatal vitamins predict nonadherence to antiretroviral therapy in pregnancy: Adherence analysis A5084. AIDS Patient Care and STDs, 22, 29–40. Delvaux, T., Elul, B., Ndagije, F., Munyana, E., Roberfroid, D., & Asiimwe, A. (2009). Determinants of nonadherence to a single-dose nevirapine regimen for the prevention of mother-to-child HIV transmission in Rwanda. Journal of Acquired Immune Deficiency Syndromes, 50, 223–230.

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Demas, P. A., Thea, D. M., Weedon, J., McWayne, J., Bamji, M., Lambert, G., & Schoenbaum, E. E. (2005). Adherence to zidovudine for the prevention of perinatal transmission in HIV-infected pregnant women: The impact of social network factors, side effects, and perceived treatment efficacy. Women and Health, 42, 99–115. Dimatteo, M. R., Haskard, K. B., & Williams, S. L. (2007). Health beliefs, disease severity, and patient adherence: A meta-analysis. Medical Care, 45, 521–528. Duff, P., Kipp, W., Wild, T. C., Rubaale, T., & Okech-Ojony, J. (2010). Barriers to accessing highly active antiretroviral therapy by HIV-positive women attending an antenatal clinic in a regional hospital in western Uganda. Journal of the International AIDS Society, 13, 37. El-Khatib, Z., Ekstrom, A. M., Coovadia, A., Abrams, E. J., Petzold, M., Katzenstein, D., Morris, L., & Kuhn, L. (2011). Adherence and virologic suppression during the first 24 weeks on antiretroviral therapy among women in Johannesburg, South Africa—A prospective cohort study. BMC Public Health, 11, 88. Higgins, J., & Green, S. (2011). Cochrane handbook for systematic reviews of interventions version 5.1. 0: The cochrane collaboration; 2011 [updated March 2011]. Available from: www.cochrane-handbook.org. Ickovics, J. R., Wilson, T. E., Royce, R. A., Minkoff, H. L., Fernandez, M. I., Fox-Tierney, R., Koenig, L. J., & Perinatal Guidelines Evaluation, G. (2002). Prenatal and postpartum zidovudine adherence among pregnant women with HIV: Results of a MEMS substudy from the Perinatal Guidelines Evaluation Project. Journal of Acquired Immune Deficiency Syndromes, 30, 311–315. Kapetanovic, S., Christensen, S., Karim, R., Lin, F., Mack, W. J., Operskalski, E., Frederick, T., Spencer, L., Stek, A., Kramer, F., & Kovacs, A. (2009). Correlates of perinatal depression in HIV-infected women. AIDS Patient Care and STDs, 23, 101–108. Kirsten, I., Sewangi, J., Kunz, A., Dugange, F., Ziske, J., Jordan-Harder, B., Harms, G., & Theuring, S. (2011). Adherence to combination prophylaxis for prevention of mother-to-child-transmission of HIV in Tanzania. PLoS One, 6, e21020. Laine, C., Newschaffer, C. J., Zhang, D., Cosler, L., Hauck, W. W., & Turner, B. J. (2000). Adherence to antiretroviral therapy by pregnant women infected with human immunodeficiency virus: A pharmacy claims-based analysis. Obstetrics and Gynecology, 95, 167–173. Leigh, B., & Milgrom, J. (2008). Risk factors for antenatal depression, postnatal depression and parenting stress. BMC Psychiatry, 8, 24. Liberati, A., Altman, D. G., Tetzlaff, J., Mulrow, C., Gotzsche, P. C., Ioannidis, J. P., Clarke, M., Devereaux, P. J., Kleijnen, J., & Moher, D. (2009). The PRISMA statement for reporting systematic reviews and meta-analyses of

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studies that evaluate health care interventions: Explanation and elaboration. PLoS Medicine, 6, e1000100. McDonald, K., & Kirkman, M. (2011). HIV-positive women in Australia explain their use and non-use of antiretroviral therapy in preventing mother-to-child transmission. AIDS Care, 23, 578–584. Mellins, C. A., Chu, C., Malee, K., Allison, S., Smith, R., Harris, L., Higgins, A., Zorrilla, C., Landesman, S., Serchuck, L., & Larussa, P. (2008). Adherence to antiretroviral treatment among pregnant and postpartum HIV-infected women. AIDS Care, 20, 958–968. Mepham, S., Zondi, Z., Mbuyazi, A., Mkhwanazi, N., & Newell, M. L. (2011). Challenges in PMTCT antiretroviral adherence in northern KwaZulu-Natal, South Africa. AIDS Care, 23, 741–747. Nachega, J. B., Uthman, O. A., Anderson, J., Peltzer, K., Wampold, S., Cotton, M. F., Mills, E. J., Ho, Y. S., Stringer, J. S., McIntyre, J. A., & Mofenson, L. M. (2012). Adherence to antiretroviral therapy during and after pregnancy in low-income, middle-income, and high-income countries: A systematic review and meta-analysis. AIDS, 26, 2039–2052. Nel, A., & Kagee, A. (2013). The relationship between depression, anxiety and medication adherence among patients receiving antiretroviral treatment in South Africa. AIDS Care, 25, 948–955. Peltzer, K., Mlambo, M., Phaswana-Mafuya, N., & Ladzani, R. (2010). Determinants of adherence to a single-dose nevirapine regimen for the prevention of mother-to-child HIV transmission in Gert Sibande district in South Africa. Acta Paediatrica, 99, 699–704. Peltzer, K., Sikwane, E., & Majaja, M. (2011). Factors associated with shortcourse antiretroviral prophylaxis (dual therapy) adherence for PMTCT in Nkangala district, South Africa. Acta Paediatrica, 100, 1253–1257. Poppa, A., Davidson, O., Deutsch, J., Godfrey, D., Fisher, M., Head, S., Horne, R., Sherr, L., British, H. I. V. A., & British Association for Sexual, H., & HIV. (2004). British HIV Association (BHIVA)/British Association for Sexual Health and HIV (BASHH) guidelines on provision of adherence support to individuals receiving antiretroviral therapy (2003). HIV Medicine, 5(Suppl 2), 46–60. Rich-Edwards, J. W., Kleinman, K., Abrams, A., Harlow, B. L., McLaughlin, T. J., Joffe, H., & Gillman, M. W. (2006). Sociodemographic predictors of antenatal and postpartum depressive symptoms among women in a medical group practice. Journal of Epidemiology and Community Health, 60, 221–227. Simek, E., McPhate, L., & Haines, T. (2012). Adherence to and efficacy of home exercise programs to prevent falls: A systematic review and meta-analysis of the impact of exercise program characteristics. Preventive Medicine, 55, 262–275.

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Turner, B. J., Newschaffer, C. J., Zhang, D., Cosler, L., & Hauck, W. W. (2000). Antiretroviral use and pharmacy-based measurement of adherence in postpartum HIV-infected women. Medical Care, 38, 911–925. Vaz, M. J., Barros, S. M., Palacios, R., Senise, J. F., Lunardi, L., Amed, A. M., & Castelo, A. (2007). HIV-infected pregnant women have greater adherence with antiretroviral drugs than non-pregnant women. International Journal of STD and AIDS, 18, 28–32. Vyavaharkar, M., Moneyham, L., Tavakoli, A., Phillips, K. D., Murdaugh, C., Jackson, K., & Meding, G. (2007). Social support, coping, and medication adherence among HIV-positive women with depression living in rural areas of the southeastern United States. AIDS Patient Care and STDs, 21, 667–680. WHO. (2010). Antiretroviral drugs for treating pregnant women and preventing HIV infection in infants: Recommendations for a public health approach. WHO. Wilson, T. E., Ickovics, J. R., Fernandez, M. I., Koenig, L. J., Walter, E., & Perinatal Guidelines Evaluation, P. (2001). Self-reported zidovudine adherence among pregnant women with human immunodeficiency virus infection in four US states. American Journal of Obstetrics and Gynecology, 184, 1235–1240.

CHAPTER 3

Understanding Guyanese Women’s Experiences of ART Adherence

…they would come and say nurse I drink my tablets cause I want me baby fuh born good, and I don’t want nothing happen to me baby….—midwife, 11 years HIV/AIDS experience

3.1

Introduction

A recent systematic review and meta-analysis on ART adherence in developing and developed countries (Nachega et al., 2012), reported that only 74% of pregnant women attained the optimum level of antiretroviral adherence, making this an important public health issue. During the study period, Guyana had an estimated adult HIV prevalence of 1.3% (UNAIDS, 2013) with over 50% of women (53.2%) shouldering the disease (MOH, 2012). In this chapter, I will describe the methodology and findings for the in-depth interviews which aimed to explore the lived experiences of HIVpositive pregnant and postpartum women, and the perspectives of their providers on the barriers and facilitators to ART adherence. The Framework Method was used to analyse the women’s and healthcare workers’ interviews. The results of the study included a description of the sites and participants, adherence patterns of the women, barriers and facilitators of adherence and a summary of the key findings.

© The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 D. Vitalis, Adherence to Antiretroviral Therapy among Perinatal Women in Guyana, https://doi.org/10.1007/978-981-15-3974-9_3

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3.1.1

Rationale for Use of Qualitative Method

Qualitative research aims to explore the “lived” experiences of individuals from their own perspective to gain meaningful understanding of the underlying issues impacting their behaviour, thereby generating knowledge on the phenomena being studied (Green & Thorogood, 2010; Malterud, 2001; Onwuegbuzie & Leech, 2007; Sandelowski, 1995). Qualitative methods focusing on in-depth exploration of phenomena use purposeful sampling of “information-rich cases” (persons, groups, events) for contextual understanding rather than generalization to the wider population (Malterud, 2001; Onwuegbuzie & Leech, 2007; Patton, 2002; Sandelowski, 1995). Interviews with healthcare workers (doctors, nurses, social workers) will be used to understand their perspective on factors that contribute to HIV-positive women’s adherence and will help triangulate data from interviews with HIV-positive women. Finally, perspectives that contradict identified themes will be presented, as divergent information can make the findings more nuanced and pragmatic (Creswell, 2009).

3.2

Study Objective

The objective of this study as outlined in (Vitalis & Hill, 2017) was to explore the experiences of HIV-positive pregnant and postpartum women and their providers on the barriers and facilitators to ART adherence. 3.2.1

Research Questions

I explored the following questions: a. How do HIV-positive pregnant and postpartum women describe their ART experiences? b. How do healthcare providers describe the adherence behaviour of HIV-positive pregnant and postpartum women? c. What are the factors that contribute to adherence and nonadherence among pregnant and postpartum HIV-positive women?

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3.3

Methods

3.3.1

Study Setting

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Interviews were conducted at five clinics within Region 3 (West Demerara Regional Hospital Antenatal clinic) and Region 4 (Campbellville Health Centre, Dorothy Bailey Health Centre, Georgetown Public Hospital OBGYN clinic, and Beterverwagting Health Centre). I recruited from all potential sites and conducted all the interviews. Some clinics had antenatal care on the same day, so this meant visiting these sites every other week. 3.3.2

Sample and Recruitment

Sampling and recruitment were outlined in (Vitalis & Hill, 2017). Participants (women, healthcare staff) were selected through a homogenous sampling method (Patton, 2002), a purposive technique to choose a group with similar characteristics. The objective is to gain a detailed understanding of the HIV-positive women’s ART adherence. Comparable numbers of each group (pregnant and postpartum women) were selected. Participants had to be at least 16 years old (minimum age of consent in Guyana), HIV-positive, with the ability to understand and provide consent. Healthcare providers were eligible if they provided care to participants at the facility. A nurse supervisor/senior nurse assisted with identifying women representative of the target population. Women were considered for inclusion if they were pregnant, or up to one year postpartum and had initiated ART prior to or in the current pregnancy. Each week during the study period, I spent the allotted time for each clinic session at the clinic to ensure access to all eligible participants. At each of the five study sites, nurses initially informed the women about the study, and I subsequently gave detailed information about the nature and purpose of the study to those who expressed an interest. Of the 25 women invited, one declined, resulting in 24 interviews. All nine healthcare providers I contacted accepted and were interviewed on site. Participants gave written informed consent and received copies of the information sheet and consent form.

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3.3.3

Data Collection Methods

Data collection occurred between February 2012 and April 2012. Nine healthcare providers and 24 HIV-positive women were interviewed with a semi-structured interview guide. Participants were interviewed at their convenience in a private room during clinic sessions, and if not feasible, an appropriate date and time was negotiated for the same venue. Personal identifiers were removed from transcripts to maintain confidentiality and were secured in a separate file. All transcripts and audio files were maintained in accordance with the UK Data Protection Act, 1998. Interviews were conducted in English and their duration averaged 45 minutes. All interviews were audio taped and transcribed verbatim. I made notes on the clinic environment, non-verbal cues, demographic data and start and end times. These notes were then used to add context to the analysis. Patients received a hand-out titled “You and your HIV medication” at the conclusion of the interview. The hand-out highlighted general information and tips on the importance of taking ART. Although financial incentives were not provided, each patient received a sandwich and a bottle of juice at the conclusion of the interview, in keeping with local customs. 3.3.3.1 Interview Guides The interview guides were informed by the research literature on adherence and PMTCT (Armistead et al., 1999; Bachrach & Newcomer, 1999; Carver, 1997; Farber et al., 2003; Kalichman et al., 1999; Kirshenbaum et al., 2004; Koopman et al., 2000; Kumar et al., 2006; Ladzani et al., 2011; Proctor et al., 1999; Rivero-Mendez et al., 2010; Simoni et al., 1995; Sowell et al., 2003; Wesley, 2007). The HIV-positive women’s guides focussed on adherence and treatment and care experiences. The guides were pretested by the supervisory team and a local health provider. Based on feedback from supervisors, they were refined to include a section on pregnancy thoughts, desires and expectations. There were no other changes. As ART adherence can be impacted by a variety of factors, the topic guides explored issues such as: HIV-positive patients’ living situation; their experiences with an HIV diagnosis; disclosure (Armistead et al., 1999; Kalichman et al., 2003; Kumar et al., 2006; Simoni et al., 1995; Sowell et al., 2003); mental health and coping (Carver, 1997; Farber et al., 2003; Koopman et al., 2000); pregnancy thoughts, desires and

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expectations (Bachrach & Newcomer, 1999; Kirshenbaum et al., 2004; Wesley, 2007); medication history; adherence; medical care; delivery and infant feeding (Ladzani et al., 2011). Healthcare providers’ guide focused on ART and infant feeding adherence, and their roles/responsibilities at the clinic. Prompts were necessary to gather more detailed information from participants.

3.4

Research Ethics

Ethical approval was obtained from University College London (ID 3518/001) and Ministry of Health, Guyana (Protocol #48). To protect the identity of the participants, personal identifiers and demographic data were collected on a separate sheet, and safely secured, while code numbers were used for the audio tapes. Prior to giving consent, participants were apprised of the following: • They were not obliged to take part in the study. • They could withdraw from the study at any time without any negative repercussions to their care at the site. • They could refuse to answer any question without having to provide a reason. • Their names and other personal identifiers would not be used in any public documents. Participants were encouraged to ask questions before and after the interview and given my local contact number (printed on the consent form and information sheet). All recordings and documents were safely secured on a password-protected computer and locked file cabinet. Information provided has been kept in confidence and in compliance with the UK Data Protection Act, 1988.

3.5

Data Management and Analysis

I recorded the interviews using an Olympus digital voice recorder (WS750M) and uploaded them to a laptop computer where they were transcribed with Microsoft Word. It should be noted that there were no personal identifiers on the voice recordings. Audio files were translated maintaining the local dialect. These were also validated with the original

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files for accuracy, then imported into NVIVO QSR International, version 10 for qualitative data analysis (QSR, 2012). The Framework Method (FM) was selected for the qualitative data analysis. The Framework Method was developed during the 1980s by Jane Ritchie and Liz Spencer who were affiliated with the National Centre for Social Research (NATCEN) in the United Kingdom (Gale et al., 2013; Green & Thorogood, 2010). Although initially used in social policy research, FM is now increasingly used for health research (Chakrapani et al., 2011; King et al., 2012; Mbilinyi et al., 2011; Paul et al., 2013). The five steps of Framework analysis (Green & Thorogood, 2010) are outlined below and were also described in (Vitalis & Hill, 2017). 1. Familiarization—multiple readings of the text files and repeated screening of audio files to gain a detailed understanding. 2. Thematic analysis—developing appropriate codes for segments of the text. 3. Indexing—applying these codes to relevant sections of the transcript. 4. Charting—use of a spreadsheet to highlight key themes with the relevant data from a participant to facilitate comparison of relationships within and between codes. 5. Mapping and interpretation—selecting themes originating from the transcripts and exploring the significance and associations of these relationships. Data analysis commenced with many readings of the transcripts. Themes from the questions in the interview guides were selected for the initial coding process. The first ten transcripts were hand coded for ease of double coding and to develop a draft coding frame. The same transcript was initially hand coded by two separate persons to enhance coding rigour by engaging in reflexive discussions and sharing conceptual thoughts and interpretations. New codes were then created to fit sections of the data that did not conform to the pre-existing codes. The pre-existing and newly defined codes were subsequently applied to the remaining transcripts. New codes were also assigned to other segments of the transcript for which the initial themes were not relevant.

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After the manual (hand-coding) process, the transcripts were uploaded to NVIVO software for data management and continuation of the coding process. A coding tree with parent–child nodes was created using the themes from the hand-coded transcripts. This was an iterative process since sections of text which upon reflection did not fit existing codes were assigned new codes. This process continued until all transcripts were coded in NVIVO. The coding tree of parent–child nodes was further reduced by merging and reorganizing themes. A Microsoft Excel spreadsheet was designed as a matrix with the major themes identified and their corresponding text quote in a cell. Finally, these themes were further refined and reduced (mapping) into a manageable hierarchy of themes for discussion. The coding process inclusive of generation of themes were reviewed and discussed with supervisors.

3.6

Reflexivity

As described in the qualitative research literature, being reflexive serves two main purposes: to critically examine the overall research process; and to discuss the researcher’s role in the context of collecting and analysing data (Creswell, 2014; Green & Thorogood, 2010). The study was undertaken in a country where I had worked for a nine-year period as the coordinator of the PMTCT programme, from a pilot project to one of national scope, and this doctoral research project is the culmination of my work in that field. Guyana is a multiracial society of six ethnicities. As such, my African ancestry made it easy for me to blend in with the ethnic mix. Clinic nurses’ initial discussion of the study with participants helped to allay any reluctance and fears of confidentiality breeches. Furthermore, I apprised respondents of my involvement in the PMTCT programme and subsequent departure to advance my studies. In addition, being female and conducting interviews at the clinic site enabled an atmosphere of trust and a good rapport, which may have contributed to the rich personal stories told by the women. As the former coordinator of the PMTCT programme, I was curious about its status and progress, and about the personal accounts of the women and health workers. This interest could have led me to downplay problems with adherence or problems at the clinics, but this was minimized with supervisory oversight. The initial hand coding was reviewed and discussed with the UCL supervisory team which helped identify any

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biases I may have had. In addition, I sought to maintain objectivity through rigorous indexing and charting. Further, the taped audio recordings and verbatim translations would have greatly reduced those inherent biases.

3.7 3.7.1

Results

Characteristics of Healthcare Providers

Healthcare participants included three doctors, one Medex,1 four midwives and a social worker ranging from 28 to 61 years. The majority had a university education and were of Christian faith. All were Guyanese, except for a Cuban doctor. Their combined HIV care and treatment experience with women averaged seven years with a range of 1–12 years. 3.7.2

Characteristics of HIV-Positive Pregnant and Postpartum Women

All HIV-positive women were Guyanese, 11 pregnant and 13 postpartum, aged 18–39. Three of the women were prima-gravidas, while the others already had children: five women had one child and 16 women had at least two children. The majority (15) of the women were prescribed Atripla, a fixed-dose combination (FDC) of three drugs (efavirenz, emtricitabine and tenofovir disoproxil fumarate) to be taken once daily, with the remainder being on multiple-compound regimes. The demographic characteristics of the 24 HIV-positive women are presented in Table 3.1.

3.8

Context of Women’s Lives with HIV

In the following section, I will describe the circumstances of the respondents in terms of the effects of their HIV-positive diagnosis, ART medication adherence, while being pregnant for the first time or having other children, amidst the socio-economic and psychosocial issues impacting their daily lives.

1 A Medex is a cadre of health worker comparable to that of a physician assistant with the ability to prescribe certain types of medication.

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Table 3.1 Demographic characteristics of HIV-positive women

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Characteristics Age < 20 20–29 30–39 Ethnicity African East Indian Mixed Amerindian Education None Primary Secondary Religion Muslim Hindu Christian Marital Status Single Married Common-law Occupation Counsellor Domestic Security guard Hair/Cosmetologist Self-employed Housewife ART regimen Fixed-dose drug Multiple compound

3.8.1

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n = 24 1 16 7 9 7 7 1 1 4 19 1 3 20 9 3 12 1 1 2 2 2 16 15 9

Diagnosis

The majority of women I spoke with were diagnosed with HIV during pregnancy while receiving antenatal care. Of the remainder who were tested when they were not pregnant, many did so after becoming ill, while the others just took a routine test. Two young women had tested positive in their teens as a result of being raped. Time since diagnosis was as recent as a few months to as many as nine years, with many women being diagnosed at least three years before the interview.

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Many women were shocked and saddened on receiving an HIVpositive diagnosis: Because I never really go out and have myself wild around the place and deh with this person. I was in de house all de time. I marry to him and I never use to go anyway. I does be home all the time, unless he take me out.—32-year old, 15-weeks pregnant, 2 children (PR023)

Another 29-year old, 16-week pregnant mother of four children simply stated in tears “Because I was faithful.” A 22-year old pregnant woman initially stated that she was not surprised with her HIV test result: I din feel no way, cause I know my chile [child] father, he’s that kind of person. He don’t stick to one person, so I expect anything.—(PR009)

However, when asked if she expected her result to be positive, she replied “not really”—39-week gestation, common-law status (PR016). Whether the HIV test results were expected or not, many of the women diagnosed in pregnancy or another period, experienced mood disorders, and either harboured suicidal thoughts or attempted suicide: I had want to commit suicide, kill meself, but I remember I have three children to live for.—22-years, married, three children (PP013) I tell yuh, I was like all thing, bad thoughts da coming in my mind, commit suicide, go away, drink poison, kill maself, yuh know, alotta things….—29years, common-law status, three children (PP024)

Some contemplated having an abortion, but were persuaded otherwise by family, friends or healthcare providers: …I wanted, I had wanted to do an abortion, but when I got counselled they told me that I could have had the baby, and that there was treatment so the baby wouldn’t um born positive, so I agreed to keep the pregnancy.—27-years, 33-weeks pregnant, common-law status (PR022)

3.8.2

Coping

The women I spoke with were strong-willed and focussed on staying alive to care for their children, despite a few not having anyone to confide in or

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discuss their day-to-day problems. Many were able to cope using a variety of strategies, such as trying not to think about their illness, trying to “live a normal life”, with the support of family friends and partners. …I don’t study that, cause I does, I does always told my kids if one day your mom wake up, if one day you all wake up and you all see I die, done know that your mom gone to a safe place…but I don’t take it on. I just do what I got to do, everyday stuff…because I don’t study it, and to me if you have a sick and you keep studying it, studying it, then is when you mentally does get sick, you physical does get sick. But if you just put God in front and explore de world, everything will go right.—27-year old, 6 children (PP007)

Where reactions to disclosure were positive, social support from either family or friends facilitated coping. A 31-year old single mother stated: So at first when I find out I was HIV it was very stressful…so it take me about a while, like two weeks because I was hospitalized…and when I came out back, the strength and courage from friends and some family, I learn to cope with it and everything was Ok.—(PP003)

Partners also created an environment conducive to effectively cope, as expressed by this pregnant 27-year old mother in a common-law relationship: his reaction actually help me to get through it, because he wasn’t like mad or anything. He say it done happen and you got live with it and stuff. (PR022)

A strong belief in God also helped women to cope, like this 18-year old single, 31-weeks pregnant mother: …but the only person I find comfort in, is like when I feel down, depressed and devastated at the same time, I pick up my bible and I read Psalm 121 and I talk to God and he would comfort me; there is where I find comfort (PR017)

Similarly, a 29-year old mother of four children stated that praying helped her cope:

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well, I does try not to take it on. I cuh [can’t] really say cause I don’t take it on, you know, I does mostly pray a lot….—(PR018)

One mother found solace in a support group, though not available at all sites. Some clinics with functioning groups met on a day other than the women’s clinic day, so some were unable to attend due to financial and time constraints. 3.8.3

HIV Care and Relationship with Healthcare Providers

Many HIV-positive women were satisfied with the care and treatment they received at the clinics, as described by these 24-year old mothers: they pay a good tention [attention] to yuh. Ah like come here. They does look after yuh good….—(PP021) Yes, I like becah [because] I get nuff support and so on. Everything is alright, all the nurse dem and so, everybody alright. I ain’t get no complain about de clinic.—(PP010)

They also felt quite comfortable approaching any member of staff to discuss their issues: …you could speak to anybody if ya want, if ya have problems, to da nurse, to da social worker, to da doctor, dey very cooperative.—29-year old, three children (PP024)

Women did not feel stigmatized by the staff and valued how they were treated: well everybody treat you normal. Nobody don’t discriminate like you have HIV or so, they treat you like a normal person.—21-year old (PP020) the nurses dem are outgoing, and the doctors dem they have understanding. Along with the staff, they make you feel at home.—31-year old (PP003)

Clinic staff were also appreciated for maintaining confidentiality of medical information:

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I doan have a problem with none of them…certain things are confidential, especially my status. Since I’m coming here in 2006, nobody don’t know that I’m HIV-positive.—32-year old, two children (PR023)

Postpartum women were grateful for the free infant formula since some of them would not have been able to afford it on their own: …what I like about it, is it helping me supported by some milk, because I cya afford to buy milk every month….—34-year old, single, two children (PP011)

Although many patients were happy with the services at the clinic, a few were dissatisfied with the long waiting time for care, and how they were treated by some nurses. A mother stated that she would be reprimanded in a loud manner whenever she came to clinic late: some of dem nurses does behave too impolite…dey does talk too rough to me…well, for instance, when I came here late, dey does holler up on me an stuff.—24-year old, single, three children (PP021)

Amidst the positive reviews of services and staff, there were a few instances of breaches of information, though for two of the cases, the women could not definitively attribute the disclosures to staff. However, they continued to attend clinic: Well, I didn’t like coming to this clinic, because people does know your story more than you. Right now I want ask them like to give me about two months [laughs] not to come back, like every two months, because right now people talking about me…is somebody call me and told me…so I feel bad about it, so like I feel discouraged, like I getting break mind out of the clinic. Because I does deh, people does just watch, people don’t know what you coming clinic for, but they does just talk. I does still come yes, cause me don’t bother with people. By the time, you don’t bother with nobody, whosoever talk, talk.—21-year old, common-law status, two children (PP015)

Another mother had a negative experience at a local hospital while waiting for an electrocardiogram (ECG). She was feeding her baby formula in a public area when she was spotted by a nurse:

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…I was on da bench with couple patients, an she start open she mouth, why yuh ain’t breastfeeding dis baby, if yuh see I had de time, I woulda carry yuh in duh room fa yuh breastfeed da baby. An ya know she kinda went on, an going on, an performing…an I was in da ECG room an hear dat she telling da people on da bench, um she’s HIV-positive, an she shame fuh talk, an she ain’t want nobody know. An I kinda come out an I look up in her face, an I go round da turn, an I come back…feel very bad because yuh have to say dat is discriminating, an she for a nurse da suppose to know better, so I was yuh know, kinda upset….—29-year old, three children (PP024)

3.8.4

Pregnancy Desires and Expectations

News of a pregnancy brought joy and excitement to women and their partners who wanted children. Women in new relationships with HIVnegative partners “took a chance” while being cognizant of the risk of HIV transmission, in order to fulfil their desire of having a child: Yeah, we planned it, an when I found out I was, dat was da best thing… an we still know that it, it still a risk there, but um is like we, we were desperately praying an, an saying well we try.—postpartum, 27-year old, married, two children (PP008)

Similarly, a woman who thought she was “barren” since she had been trying for many years. She also attributed her positive serostatus to years of unprotected sex because of her desire for a child: Because I have never get pregnant in my entire life. When I found out I was pregnant, that was the most, that was the most exciting night of my life, because I had wanted a child so badly. I had wanted a child so badly, so when I found out I was pregnant, I was so much glad.—postpartum, 31-year old, single housewife, one child (PP003)

Two women, currently pregnant who had children before, opted for another child as these mothers describe: Yes, my children father want to have a nex [another] baby. He said this is the last.—32 years, two children (PR023) well I had wanted another child, so I wasn’t sad or anything—27-years, two children (PR022)

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When asked if they wanted more children, a majority of the women emphatically stated “No”, primarily because of their serostatus and not wanting to worry about the possibility of an HIV-positive baby. Others stated they had enough children, they or their partner were unemployed or they had tubal ligations. Many of those who wanted more children were in relationships with new partners, between 21 and 39 years old, and had a secondary education. A couple of the women were employed or had their own business, while the majority were housewives. 3.8.5

Living Situation

Um, da environment is nah really healthy cuz deh have aloda um drug addict people living deh, and um everybody jus keep um talking each oda name, an cursing, an is not really for children.—29-year old single housewife, 3 children (PP012)

Only two of the women I interviewed lived alone with their children. The others lived with extended families, relatives and/or partners. While the majority of the women lived in rented homes, many owned their homes, some lived rent-free in family-owned property and a few lived in homes owned by their partners. The living arrangements with extended family and other relatives provided much needed support for some: Ah went to my grandmother house an ah told her wah happen, and um I told my family, like my aunts an stuff an dey took me back to Georgetown da next day an we did da test back again jus to make sure an um, from then onwards ah went through a lot a different feelings, but de overall thing my family dey jus everybody jus try to make me feel as comfortable….— 27-year old, married, two children (PP008)

A 29-year old single mother of three children had a comparable experience: Well my aunt an my cousin always supported me no matta what, um dey always encourage me, dey neva really make me feel like an outsider, no. When I go by dem, dey always, everything dey use I could use, dey always make me feel comfortable, dey always support me in every decision I made. (PP012)

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Other women had stressful living situations, which included taunts and disparaging comments. A 22-year old housewife described this incident with her uncle and another describes encounters with her mother: …he turn and tell me that how I dead, already dead, how he don’t want I touch him or nutten. He don’t want I touch nutten for he or so, cause I dead already.—22-year old housewife (PP013) But when my mother drink alcohol and suh, I don’t know, when she ready fo curse me she does tell me about the virus and ting—34-year old housewife.—(PP011)

One 29-year old pregnant mother’s relationship with her in-laws after her diagnosis, took a toll on her, which resulted in her and her partner moving out of her in-laws’ home: …his mother vex because he living with me… and the sisters, one minute dem and you talking, one minute they ain’t talking to you… actually what made me decide to move out is because the mother start curse when he’s not at home, and like if I walking she would pass and jamming me down and dem tings…—(PR001)

A 37-year old pregnant mother and her infant son living with her sister and her sister’s four children in cramped quarters on the outskirts of town was constantly harassed by her sister over her living arrangements, but was unable to leave since both she and her partner were unemployed: Ah doan, ah doan know what to do. My sister she gave me the room, and she tell me how me gat she pon floor ah sleeping, cause she does put she mattress on de floor and she give me de bed, but she does talk about it, so ah don’t know what to do.—(PR002)

Although the majority of women lived with family, for some, their living conditions were far from ideal and were considered untenable, unsafe and uncomfortable because they lived in drug-affected areas or had housing issues. A 33-year old single mother of nine children described her situation:

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It is not a proper house we deh in, it don’t have nutten. I need a home wid everything. I have to be comfortable, because remember you got children you gotta think about. If you die now, there is nothing…maybe if I should die now, I don’t think I would die happy at all.—(PP006)

Another 29-year old housewife with three children described dangerous living conditions with a bleak future: Um, where I’m living da yard does flood out a lot, an da land is very low, but I’m trying to fill it piece by piece. And I have a small house on da land, so it leaking, it falling apart. Ah trying to get a nex one to build, but things is rough. But right now, I’m living in a terrible situation, where I’m living right now.—(PP024)

3.8.6

Individual Factors or Influences

Success in maintaining adherence is based on a variety of factors, and individual-level factors do play a role in this process. Some women began integrating intake of their medication into routine daily activities. …that just like how you know you gotta get up and bathe, you gotta eat, you gotta sleep, and now I gotta take my pills, that’s it.—27-year old, 34-weeks pregnant, on Atripla—(PR022)

Many women did not need medication reminders as they were selfmotivated to adhere to their regimen out of concern for their own health, delivering an HIV-free healthy baby, and to be around to care for their children. A 27-year old mother on a first-line multi-drug regimen expressed: Say if you wake up in the morning, and you know that you going on the table for do x, y, z, you gotta take your medication bottle there. So you know well you gotta go check this hey, you open, you take out, you drink. Even now, I don’t need no one cause I have it in my work bag, an um so if I forget I don’t drink it at home, since I reach in de bus, I drink one with my water.—(PP007)

Some women depended on technology such as mobile phone alarms as described below:

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normally I does put the phone to alarm for 8:30 every night.—21 years (PP020) well I does always get de phone nex to me an watching de time. So as soon as I see like quarter to eight or so, I does get de tablet and de water and wait on time, and mek sure I tek it on time. When I finish, I going in my bed.—29-years (PR018)

Other types of reminders involved family, particularly children even though the children were not aware of their mother’s status. Some women anchored medication intake with favourite activities, such as a television show: I know I have to drink my tablet at 7:30, an I look at news 7:00 O’ clock, so I know Channel 7 news does finish 7:30. So when dat news finish, I drink it same time….—39 years, pregnant, on Atripla (PR019)

3.9 ART Adherence Among Pregnant and Postpartum Women A majority of the pregnant women reported always taking their ART medication. Among the pregnant women who stated they always took their ART, only a few were treatment naive, having been placed on ART during the current pregnancy. Many had initiated treatment in a previous pregnancy or when they were not pregnant. Pregnant women who were non-adherent missed their ART doses from a few days to a week at a time. The pregnant women who consistently took their ART varied in terms of age, number of children, gestation, ethnicity, marital and educational status. All pregnant women who adhered except one were prescribed Atripla. Similar characteristics existed among the pregnant women who skipped or missed their ART medication, with one woman being on a second-line ART regimen. Among the postpartum women who were on ART, the majority stated they always took their medication, and there was no change in their medication adherence pattern whether pregnant or not. A few stated that they took it better during pregnancy than postpartum. Some postpartum women who had skipped or missed when they were not pregnant, indicated that they were more adherent during pregnancy, never missing any

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doses in that period. Only one postpartum woman skipped during pregnancy and the postpartum period, and described a pattern of taking her ART every other day: Yeah, I use to miss. Say that ah drink today, I might skip tomorrow, drink de nex day.—34-year old housewife, two children, second-line regimen (PP011)

A few postpartum women were not prescribed ART at the time of interview but described their adherence during prior pregnancies. A 27-year old married mother of two children (PP008) took all ART doses, while this mother of nine admitted a pattern of consistently not taking her ART after a certain period for all her pregnancies: …I does drink it like, I drink like in the 5th , 6 months. I drink it like the 7 month, and then after that I find I couldn’t drink it… I would drink it till mornings…and so I stop drinking it, yeah…I stop drink it till I done get baby. I don’t drink it back. When I stop, I don’t drink it back…I studying de baby and sometimes my mind say drink this tablet, get up and drink de tablet. And then in the morning I would get up and drink it again, and then it gone again, I can’t take it anymore.—33-years, nine children (PP006)

Both postpartum women were on the same regimen of Combivir and Kaletra and had secondary education, but their characteristics differed in terms of age, employment status, ethnicity, marital status and number of children. 3.9.1

Adherence to Infant’s ART and Feeding Method

Most women adhered to their baby’s ART doses prescribed after delivery, and only a few missed doses. The women who missed doses or discontinued the paediatric ART formulations were also non-adherent with their own ART (fortunately, all their children were HIV-negative). But like the first three days you would give them morning, afternoon. You gon continue it for the three days straight…but sometime I would stop, and then I remember the nex day or so and would give them a dose or so….—33 years, nine children (PP006)

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Another period of adherence for postpartum women was infant feeding, and all opted to formula feed based on advice from healthcare providers and the prospect of free milk until the baby attained age 18 months. Pregnant women also indicated that they would not breastfeed. They were able to maintain this decision: well dey tell me that when is born, I can’t breastfeed. You could transmit da disease through breastfeeding, so I use to give her bottle.—29 years, three children (PP012)

Those who were queried by in-laws, relatives and others for not breastfeeding, responded with creative reasons, for their choice, such as, being able to leave the baby with anyone: Ah does tell dem, because I could leave her any way if ah want to go any way, could leave her any way.—29-year old housewife, three children (PP024)

A 24-year old mother of one child and her partner would inform curious outsiders that the baby was breastfed at home, but used formula when away from home: …when you go out sometimes, they does ask we why we feeding wid bottle. Sometimes he father first does talk and say he does nurse, but when we deh home; when we come out he does use bottle.—(PP010)

3.10 ART Adherence Perspectives of HIV-Positive Women and Providers In this section, I will first discuss the overall adherence behaviour of pregnant and postpartum women followed by the seven key themes of ART facilitators and barriers identified from the in-depth interviews. 3.10.1

Women’s Adherence to ART Medications

Adherence during pregnancy and postpartum was not straightforward. During both pregnancy and the postpartum period missed doses were commonly reported. On exploration, it appeared that the rate and duration of adherence for pregnant women varied. There were those who

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reported being non-adherent from a few days to a week at a time. As many studies look at episodic adherence, this qualitative data reflects the adherence course over the duration of pregnancy. There is little information in the literature on sporadic adherence and how it may affect pregnancy outcome. The interview delved into the underlying reasons for this type of non-adherence. Although most postpartum women reported no change in their adherence patterns during or after pregnancy, since they always took their ART, a few admitted taking ART better during pregnancy. Overall, healthcare workers indicated better adherence during pregnancy, attributing this to concern for the baby. The next section describes the key themes identified from the interviews. 3.10.1.1

Theme 1: Wanting a Healthy Baby or Wanting to Be Around for Other Children

…I was saying to myself, don’t let my baby get it, let it be me alone. That was all I was saying to myself, and I keep coming to clinic every day, I never missed a clinic date….—32-year old housewife, two children, never skipped/missed ART—(PR023)

Many women were preoccupied with concerns for the well-being of their children throughout their pregnancy and expressed these sentiments in different ways. One 31-year old housewife (PP003) who was not adherent when she wasn’t pregnant, disclosed better adherence during pregnancy. A 29-year old mother of three children articulated why she did not skip or miss any doses: because dat was da um, da tablets dat gon help me from preventing my child from getting HIV.—(PP012)

Mothers were worried about the well-being of their children if they should get very ill or die, like the 29-year old single mother of four children who cried while expressing this sentiment: “that anything happen to me, what gon become of my children”—(PR009). Having other children to care for gave women the courage to live despite wanting to give up as expressed by this 29-year old mother of three young children:

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…sometimes ah doan wan drink it, like ah does jus feel like giving up, so to jus avoid from giving up, ah does always seh my children are there an ah have to be there for my children, an without this medication, ah mighten be deh, so ah jus, ya know, keep drinking it.—(PP024)

The desire to deliver a healthy baby (protect the unborn child), or to be around to see their children grow up was shared by both pregnant and postpartum women and was a strong motivating factor for adherence. Women were also concerned about the fate of their children if something happened to them, and worried about how they would be cared for in their absence. Similar sentiments of children as a source of inspiration for adherence were echoed by healthcare staff. Children as facilitators of adherence have been identified in similar studies among HIV-positive women and provide them with motivation to keep appointments, take their medication and take better care of themselves (Stinson & Myer, 2012; Wood et al., 2004). However, suboptimal adherence can occur when caring for children becomes burdensome such as with deteriorating health of the mother or other sick family members to care for (Holstad et al., 2006; Reda & Biadgilign, 2012), although this issue was not reported by the women in this study. 3.10.1.2 Theme 2: Being Pregnant for the First Time Being pregnant for the first time or being pregnant with a child for a new partner (who wanted a child) served as a strong motivating force for adherence, as women in these types of situations reported that they never missed taking their ART medication. The desire to have children in spite of sero-positivity is quite common among women PLHIV (Cooper et al., 2007; Finocchario-Kessler et al., 2010; Nobrega et al., 2007), and many continue to have more children (Bravo et al., 2010; Craft et al., 2007) which was also evident in this study as most women had at least two children. A strong desire to be a mother (Smith & Mbakwem, 2007) was the reason advanced by an HIV-positive woman in this study for getting pregnant. While other studies have reported an association with having more children as a means of avoiding stigma, the issue was not explored in this study. However, not all women wanted more children (although there was desire) citing concerns about their own health and potential to infect the child as reported in studies by Kanniappan et al. (2008) and Oosterhoff et al. (2008).

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3.10.1.3 Theme 3: Simplified ART Regimen Most pregnant and postpartum women were prescribed a once-daily regimen, Atripla. Although all women reported that having to take just one pill was much easier than taking multiple tablets, this simplicity did not translate into complete adherence as some women were nonadherent due to varied reasons such as medication side effects and lack of food. It should be noted that Atripla, a combination of three drugs (Efavirenz, Emtricitabine and Tenofovir disoproxil fumarate) manufactured by Bristol-Myers Squibb and Gilead lists many of the side effects which were reported by the women such as drowsiness, dizziness, nausea, vomiting and nightmares. The manufacturers recommend taking this medication on an empty stomach and at bedtime to reduce the severity of these effects (Bristol-Myers, 2015). However, the findings indicated that women were not aware of these side effects as some would stop taking their medication until they were able to consult with providers. 3.10.1.4 Theme 4: ART Medication Side Effects More than half of the women were prescribed the once-daily pill Atripla, others were on another first-line regimen of multiple drugs, and two women were on a second-line regimen of at least seven tablets. Women experienced side effects regardless of the type of regimen they were taking which was one of the primary reasons for non-adherence. Many of the women experienced mild to severe medication side effects such as drowsiness, headaches, vomiting and nightmares. …cah de tablet does mek I feeling bad, ah bringing up, and ah does cya eat, cah it mek ah vomiting every minute—37-year old, 33-weeks pregnant, on Atripla (PR002)

One pregnant mother on Atripla stopped taking her medication after initially experiencing headaches and drowsiness for three consecutive days. She was advised by clinic staff to take it before bedtime, significantly reducing her symptoms and enabling here to adhere thereafter. Another 18-year old pregnant woman described her experience with the same drug: …I feel like I drink two bottles of vodka…large bottles of vodka. I feel really intoxicated, like I was just at a rum shop and all I was doing is sitting there and drinking…I go in my bed and lie down and sleep, sleep

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it off; you wake up fresh, you don’t feel anyway—31-weeks pregnant with first child (PR017)

Women disclosed these side effects contributed to sporadic or total nonadherent behaviour. One such woman, a 22-year old security guard, pregnant with her first child on a second-line regimen, had stopped completely, and commented: I does feel drowsy, drowsy; yeah I miss sometime when I feel bad; I does vomit, every time I drink it I does vomit, so I don’t drink it.—(PR005)

Both mild and serious symptoms resulted in missed doses. Reaction to side effects varied, as some women who experienced adverse effects for a few days rallied through and others skipped or stopped until their next clinic appointment. Those who experienced adverse effects for longer periods skipped from a few days to a week at a time. Women experiencing side effects from the once-daily regimen were advised by staff to take it at bedtime. According to the women, this change in dose time helped alleviate their symptoms and enabled better adherence. Adverse drug reactions to ART regimens are not uncommon among pregnant women as they are in other HIV-positive populations. While the use of ART has revolutionized treatment of HIV-positive pregnant women for their own health and MTCT, ART has also been associated with adverse effects for the pregnancy, mother, positive as well as exposed children (Newell & Bunders, 2013; Weinberg et al., 2011). Pregnancy outcomes can include preterm deliveries, hypertension, and small-forgestational age (SGA) infants (Ndirangu et al., 2012; Watts & Mofenson, 2012). The prevalence of adverse reactions in pregnant women can range from 5 to 78% based on geographic location, socio-economic status, time on ART and immune system (Santini-Oliveira et al., 2014). About 80% of the pregnant women in this survey were on the fixed-dose combination drug (FDC), Atripla, 5% on a PI plus NRTI regimen and 15% on a PI plus NNRTI regimen which includes the drug Nevirapine (NVP). Prolonged use of NVP has been associated with liver toxicity and rash, particularly at higher CD4 levels, though symptoms dissipate on cessation of drug (Ford et al., 2013; Santini-Oliveira et al., 2014). Abdominal pain, nausea and vomiting are known side effects of PIs (Santini-Oliveira et al., 2014), the regimen which the majority of women were prescribed

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in this study. As more women are placed on lifelong ART based on WHOs revised treatment guidelines (WHO, 2013), the nature and frequency of adverse events need to be monitored routinely given the limited laboratory capacity in low to middle-income countries (Newell & Bunders, 2013) like Guyana, compounded by the pervasive effects of poverty on health outcomes. 3.10.1.5

Theme 5: Socio-Economic Hardships—Lack of Food and Finances Lack of food was cited by about 50% of the women for missed doses, as taking medication without food made them nauseous. Few women who indicated they did not have money to pay transportation costs missed some clinic sessions. Healthcare providers underscored the adverse impact of these two issues on the women’s adherence to ART. Many women were reliant on financial contributions from family. A few were abandoned by partners. Some disclosed that lack of food hampered abilities to consume medications, as described by a 37-year old pregnant housewife of four children and a 22-year old, single woman having her first baby and working as a security guard: ah does skip one or two times when me ain’t get nothing fuh eat.—37 years (PR002) Yeah, I miss, I stop off couple times, because how I does deh, plus you does got fo eat, so if I ain’t get nuffing fo eat, I don’t drink it.—22-years (PR005)

Although many women were poor and sometimes did not have the necessary funds for transportation costs to attend clinic, they recognized the importance of keeping their clinic appointments and resorted to borrowing money just to be there as these mothers describe: Only sometimes, I does be passage wise, but I does work it out, even though I have to borrow money and refund it back, I does make sure I come.—31years, single mother of one child (PP003) well right now my worry is finance, finance money, that does give me headache right now, cause I’m not working. Right now, my brother is at home, he ain’t working; my mother doan work, so fo come to clinic today

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is borrow I had to borrow $1000 [US$5] from a friend, till when my brother get money, he give me and I could pay her back.—34 years, single mother of two children (PP011)

Issues of inadequate food and finances are really grounded in the underlying issues of poverty and socio-economic status and have been described in prior studies as potential barriers of ART adherence (Kalichman et al., 2011; Musumari et al., 2013; Ngarina et al., 2013). Financial woes relate to money for transportation and other treatment-related costs (Duff et al., 2010; Wasti et al., 2012). Inadequate food (food insecurity) encompasses insufficient caloric intake, consumption of inappropriate nutrients and anxiety in trying to obtain food (Singer et al., 2014). Food insufficiency can contribute to reduced quality of life, opportunistic infections, and poor mental health. ART medications can cause an increase in appetite which leads to hunger, while some medications require being taken with food to minimize side effects, subjecting women to a vicious cycle (Weiser et al., 2010; Musumari et al., 2013). The participants in this study would have been confronted with similar issues as they grappled with these barriers. 3.10.1.6 Theme 6: Non-Disclosure of HIV Status Only one woman did not disclose her status to anyone because she thought that her family would “spread it”. Most women divulged their HIV status to at least one person, (family, partner or friend). Others only disclosed to a friend, fearful of being rejected by relatives. Reaction to the women on disclosure of their status varied. Some women selectively disclosed to certain family members based on how they felt they would react towards them. Many of the families and partners were quite supportive as experienced by this 27-year old married mother of two children: An everybody show me love, an dey jus show me that it’s not the end, an I have to jus think positive an don’t take it on….—(PP008)

Some women endured a period of abuse as discussed by this 29-year old mother of three children: An from since den, I went through a lot, a very lot, a bad situation wid him. He use to beat me, put me out, ill-treat me, allota things he do. Neva

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use to care about me, neva use to care about mah kid…eventually we start live an cooperate with one anoda [another]….—(PP024)

Though it was not possible to link causality between disclosure and adherence, women who had not divulged their HIV status reported being adherent with ART, and some women who had disclosed skipped or missed doses. For those women who had limited or no disclosure, storing and taking their ART was a challenge, yet they found creative ways to do so. ART medication was secured in unusual locations such as suitcases, closets and even under a bed. A 32-year old housewife reported having to hide away from her family to take medication whenever they stayed with her at home. She described those family visits as follows: Sometimes, I would take the medication out and they would be outside talking to me and I’ll say excuse me one minute and I’ll go inside and take up the medication and have it on me in my pocket, or have it on me somewhere, and then me say I have to go to de washroom and I take it. Sometimes I take it into the washroom. I don’t miss it, I don’t miss my medication, I don’t.—(PR023)

Healthcare providers were the only ones who acknowledged nondisclosure as a barrier to ART adherence. However, this did not appear to affect adherence as women who had not divulged their HIV status to family members described the creative ways they used to store and take their medication as discussed above. 3.10.1.7 Theme 7: Religious and Superstitious Beliefs Religious beliefs/spirituality served as both a facilitator and a barrier. Enquires to the women about coping mechanisms revealed the important role of religion/spirituality in their lives, and how these beliefs had both positive and negative influences. Some women made direct reference to God for strength to persevere, hope for a cure and hope that their babies would not be infected with the virus which served as a motivating factor. Um, well it didn’t really affect me that much because like I pray, I use my tablets and I pray God an I um I wanna see my daughta grow up when she was young now she is eighteen an she, I jus wanna see good fuh she an now dat I’m pregnant an I don’t wan dis baby fuh have any sick. So I jus pray God, he mus help me, leh me alone mus be sick nobody, no family member fuh me.—36-year old pregnant housewife, 1 child (PR019)

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Well, I does try not to take on…I don’t take it on, you know, I does mostly pray a lot…is only now that I, if I gotta talk about it, I would break down, but I does try not to think about it…I does think positive and ask God for the strength because it’s not something I ask for, at least for my kids’ sake [cries]….—29-year old housewife, 27 weeks gestation, 4 children (PR018)

One pregnant woman with superstitious beliefs mentioned that there were non-medicinal cures, as that provided by the indigenous group (Amerindian) that would free her of HIV. However, she stated that she would wait until after delivery to try these non-ART concoctions. I: P: I: P: I: P: I: P: I: P: I: P: I: P: I: P: I: P: P: I: P: I: P: I: P: I:

Alright. Um, have you taken any bush medicine or anything like that? No. uh uh. No, Ok. And why haven’t you tried any bush medicine? Bush medicine? You never tried any. Them seh because ah pregnant. Because you’re pregnant? Yeah. Oh, ok. When ah done get de baby. Then you’ll take the bush medicine? Yeah. Why? Becah ah want it come out out o’ meh body. Ok. You think that is truth? Yeah. You think the bush medicine will work? It will work, yeah. I have a friend, right. Uh huh. And she go fuh kill she self Uh huh. And the Amerindian man seh she pick some kinda bush. Mm hmm. Fuh get fuh boil it and drink it. Mm hmm.

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And the bush cure she. She’s now cured? Yes. And she ain’t got it. She went and she tek nuff nuff test. Ok. And Doctor seh she don’t have it. (PR002)

A postpartum woman expressed her intention to attend a local church where in her view persons were being healed of HIV by the pastor. However, the negative association with religion and adherence was expressed by a healthcare worker who stated that she had been called by a patient who claimed to be healed by a pastor and had no need for ART. 3.10.2

Health System and Perspectives of Service Providers

Although some of the health workers had differing views on the levels of adherence among pregnant and postpartum women, they all agreed that pregnant women had better adherence than non-pregnant women. Because they think that during the pregnancy they want the best for their child, they don’t want the child get sick, and once they deliver, they think that the medication is just for them, but most of them I’m telling you take the medicine. When they use it, they use it during pregnancy, they using it postpartum, and they using it even when they are not pregnant….— medical doctor (HW001) I would say pregnancy, because they within their cognitive they’re thinking this is a short-term thing and they adhere well during that period…that whatsoever should happen after, let it happen, but once the baby is safe….—social worker, regional hospital—(HW009) …when they’re pregnant. I think because of the fact that we, you know they have an unborn child and we have to stress the importance of taking the medication for the very reason of reducing mother-to-child transmission, so just being aware of that you know, that message is really deep for them.—medical doctor (HW006)

Healthcare workers (nurses, social workers and pharmacists) provided counselling as the primary method of enhancing adherence. They were responsible for counselling the women during clinic sessions:

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we give them counselling all the time, starting from me here in the room, social worker, the pharmacist, at least when they leave this institution, at least three different person, at least talk to them about their adherence.— medical doctor (HW001)

Patient support groups were available at some clinics. Other clinics distributed food, pill boxes and reminded patients of appointments. Health workers reported wanting a healthy HIV-negative baby, and the desire to see their children grow up as motivators of adherence: …because of the other children, they want to live for the children.— midwife (HW002) …for some reason, it could all be psychological, but when we do the very first test for the infant, the dry blood spot testing and it’s negative, you know they’re so happy, and I think too because of the fact that they knew they would have taken their medication during that pregnancy, and following that they feel encouraged because they say, oh well, if my inf..baby is well, oh my, you know I’ve got to do well.—medical doctor (HW006)

Other facilitators included desire for improved health (HW001), supportive partner/family (HW006) and wanting to look normal and healthy (HW008): when they feeling better, when they see that the tablet responds, they see the benefit of the medication, that made them don’t miss a dose at all—medical doctor (HW001) I think support. Once you have family support that is tremendous…you know if the support is there, many times the pregnant mothers they have their, their mothers to help them. They may not tell their partner, they may not tell their sister, but their mother…—medical doctor (HW006) I think this is a woman who wanna stay strong and healthy. You know, even though she’s HIV-positive, she wants to stay strong and healthy. When she goes out there, she wants to look normal, and she wants to feel good about herself…—midwife (HW008)

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Some of the barriers reported by health workers mirrored those expressed by the women. Financial problems were one such barrier, and eventually may have contributed to the death of a mother of six children as illustrated by this quote from a health worker: I say doctor, I don’t think she’s taking her tablet; doctor say well alright we gon do de test [CD4]; when it come she was 18 [CD4 count]; and she lef an gon in de bush, is right there she tek in and they bring she back, and she die de nex day, lef six children, she did say she did going to get money.—midwife (HW002)

Lack of food was another reason for non-adherence cited by health workers, as women did not take their medication if they had nothing to eat: …but then the problem with food, lots of them they come and they complain about you know not having food, they can’t drink the tablet on an empty stomach and stuff…—medical doctor (HW007)

Other barriers were work-related and included women who worked nights and did not take their tablets since it made them drowsy. Women who lived in far-flung communities or hinterland regions were sometimes unable to attend clinic in a timely manner. Another barrier discussed by health workers was non-disclosure: …you find that the problem that some of the women they would have is like not disclosing their status to their family, so they can’t take home these pills, they can’t let their family see them using these pills, so that is where the problem for all categories…—midwife (HW003) …there was this young girl, who she did not comply because she did not tell anybody she was HIV-positive, and to take the treatment she had to be hiding, and hiding and hiding, and after a while she just get fed up hiding. So she was placed on second-line, and even onto the second-line treatment she didn’t, she didn’t continue with the second-line, and so um I think right now she is off treatment…—health visitor/midwife (HW004)

Some health workers reported that those women who believed the church/religion would heal them were non-adherent with medication:

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…they would drop [out of clinic] for three, four months and they gon call and say they been to some Pentecostal church and de Pastor say they heal, and they ain’t got need for treatment; and now we got one of them, she say she heal, now she turn up, if you see she skin; she want doctor give she something for she skin….—midwife (HW002)

Too many clinic appointments made it difficult for women who were poor, had other children to care for, or those who were employed to attend all appointments. Some sites did not have integrated care, which meant that a pregnant woman could have antenatal care on one day, HIV treatment on another and associated blood work on yet another day, as described by this social worker at a regional hospital: …you know the clinic, they have to come to the hospital too many times; because they might have children, they have to take them to the health centre, then they have to come here to the clinic; they have to come back on a Friday to get the test done, because only on Fridays we do CD4 and these sort of tests.—social worker (HW009)

Some healthcare providers reported that women with certain characteristics such as having a high educational background or older age were more likely to adhere to their ART. …you know because we got people up there doing good jobs and suh, they you will find they taking the tablet, teachers, you understand what I mean; older folks, but de young ones, you know, oh God nurse I fed up drinking tablets; why I must drink this tablet every day; oh God man nursie I fed up…—midwife (HW002)

Other workers opined that persons who lived alone, or with partners who were also HIV-positive, women who want to be healthy, those who disclose their status and had supportive families were also good at taking their medication. Finally, all providers expressed that being pregnant and/or having other children to care for was a powerful motivator that contributed to better adherence.

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Summary

In this chapter, I described the experiences of HIV-positive pregnant and postpartum women, and the viewpoints of their providers on the challenges and facilitators of ART adherence. Healthcare staff included doctors, midwives, a social worker and a medex with many years of experience working with HIV-positive women. The HIV-positive women were predominantly multi-gravida, with at least two children, and were aged 18–39 years. Many women were in relationships, had at least a primary school education, and were mostly Christian. Many of the women I spoke with were diagnosed during a prior pregnancy, with most being HIV-positive for over five years. A few lived alone with their children, and others resided with family, relatives and/or partners. Some women endured poor living environments, verbal abuse and other forms of discrimination after they had disclosed their status. As a result, women found solace in religious and spiritual beliefs, developing a positive attitude, focussing on being around for their children and relying on the support of family, partners, friends and healthcare providers. Most of the pregnant and postpartum women reported consistent ART adherence during pregnancy and were quite creative and determined in their efforts to prevent MTCT and safeguard their own health. Postpartum women who had been on regimens prior to pregnancy, particularly those on ART for many years, were most likely to have intentionally skipped or missed doses, stopping for weeks or months at a time because they were just “fed up” taking pills. However, women who were nonadherent pre-pregnancy, reported never missing a dose during pregnancy. A few postpartum women who skipped ART doses during pregnancy were also non-adherent with the paediatric ART formulations prescribed upon discharge after delivery. These women were single housewives with similar ethnicities. All postpartum women indicated that they opted to formula feed and had no problems maintaining their choice despite strong community views on breastfeeding. Pregnant women also selected this mode of infant feeding. The women’s choices were based on the advice of health workers and free supplies of formula from the Government. ART side effects and lack of food emerged as the two major reasons for non-adherence in both groups. Some side effects were as mild as drowsiness, but could be as severe as vomiting, diarrhoea and nightmares. Mild

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effects were resolved by switching the regimen to evening hours, preferably before bedtime. Ingesting medication without eating any food may have contributed to some of the more severe side effects and resultant non-adherence.

3.12

Discussion

The picture emerging from the daily life experiences of the Guyanese women is one of determination and resilience. Women were determined to be around to care for their children and this concern served as a motivating factor. Further, to ensure ART was taken in a timely manner a variety of mechanisms were used, such as alarms, integration into the daily routine or anchoring intake with their favourite television programmes. Tenacity was evident from the actions of HIV-positive women who had not disclosed their status ensuring medications were taken, making efforts to keep clinic appointments and managing side effects. Those who had not informed partners or relatives found creative ways to maintain adherence as described in Theme 6. Women also grasped the importance of clinical appointments, few were missed and when there were obstacles to attendance, some borrowed money to enable them to keep these appointments. Those experiencing side effects tried to minimize them by adjusting their regime to maximize their ability to be adherent. For example, women on the single-tablet regimen chose to take their medication before bedtime to minimize side effects. However, some women’s efforts at maintaining adherence were thwarted due to primarily socio-economic factors, such as lack of food and financial resources, both of which have been reported in the literature as contributors of suboptimal adherence (Kalichman et al., 2011; Singer et al., 2014; Young et al., 2014). Pregnant women tend to experience higher levels of food insecurity due to the levels of nutrients required for themselves and baby. The studies highlighted that food insecurity is not only a barrier to ART adherence but also other health advice, and has the potential to adversely affect maternal and child health (Young et al., 2014). This finding by health workers of non-disclosure affecting adherence highlights a few issues. The first being providers need to delve deeper into revelations of non-disclosure to determine how this translates into adherence or lack thereof. Secondly, women are highly motivated to protect the health of their babies, and pregnancy is a strong motivating factor

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for ART adherence as highlighted in similar studies of pregnant women (Bardeguez et al., 2008; Nachega et al., 2012; Vaz et al., 2007). Finally, non-disclosure has been associated with fear of stigma and discrimination, a contributing factor to non-adherence highlighted in other studies (Awiti Ujiji, 2011; Mepham et al., 2011; Ngarina et al., 2013). This issue has also been recognized in Guyana as a barrier despite the efforts of the Government based on information from a country report (MOH, 2012, p. 72). Spirituality/religion has been defined in the literature as being a complex construct which encompasses a belief in God, faith in a higher power and a sense of peace and well-being, allowing persons with a devastating illness such as HIV to cope and improve their quality of life (Cotton et al., 2006; Trevino et al., 2010). However, spirituality has also been described as having a negative influence on behaviour resulting in adverse outcomes and suboptimal ART adherence when there is an over reliance on God at the expense of taking prescribed ART (Parsons et al., 2006; Szaflarski, 2013; Tarakeshwar et al., 2006; Trevino et al., 2010). Thus spirituality has the potential to affect both emotional and physical health (Brown et al., 2014). Although more women in this study reported positive than negative effects, the few who reported negative effects are a cause for concern as these behaviours will have implications for HIV management and care. While the true extent of this phenomenon in this population is unknown, its potential negative influence could adversely impact ART adherence and warrants further investigation. 3.12.1

Pregnancy, Motherhood and Adherence Within the Context of HIV Infection

Pregnancy is a period in women’s lives which engenders a key focus on self and keen attention is paid to adopting health and lifestyle recommendations with the primary objective of delivering a healthy baby (Heil et al., 2014; Verbeke & De Bourdeaudhuij, 2007). Motherhood is considered a major milestone for most women and plays a key role in the maternal identity of both HIV-positive and negative women (Mercer, 2004; Wilson, 2007). For HIV-positive women, motherhood is focussed on their HIV illness and is characterized by periods of acute stress as a result of worrying about their own health, guilt on the potential harm to the baby and the stigma of HIV (Sandelowski & Barroso, 2003; Sanders, 2008). Despite these stressors, motherhood for HIV-positive

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women is geared towards preserving their maternal identity by working towards protecting their children from being infected, adhering to ART and utilizing other healthcare services (Sandelowski & Barroso, 2003). Motherhood not only allows them to cope with their diagnosis, but also gives them a reason to live for the sake of their children and combat the disease (Doyal & Anderson, 2005; Sandelowski & Barroso, 2003; Wilson, 2007). This determination to maintain an identity as a good mother motivates them to adhere to treatment. As pregnancy entails several clinical visits, healthcare providers can use these visits to capitalize on the importance of motherhood in the lives of the women and their motivation to adhere to reinforce the benefits of ART to self and children thereby establishing the groundwork for lifelong maintenance of ART adherence. Healthcare staff should also provide timely and non-judgemental interventions to address potential problems as they might be the only persons offering social and emotional support which could have a positive impact on adherence. In the following chapter (Chapter 4), I discuss the methodology and data analysis for the cross-sectional descriptive studies on adherence among pregnant women with and without HIV.

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Weinberg, A., Forster-Harwood, J., Davies, J., Mcfarland, E. J., Pappas, J., Kinzie, K., Barr, E., Paul, S., Salbenblatt, C., Soda, E., Vazquez, A., & Levin, M. J. (2011). Safety and tolerability of antiretrovirals during pregnancy. Infect Dis Obstet Gynecol, 2011, 867674. Weiser, S. D., Tuller, D. M., Frongillo, E. A., Senkungu, J., Mukiibi, N., & Bangsberg, D. R. (2010). Food insecurity as a barrier to sustained antiretroviral therapy adherence in Uganda. PLoS One, 5, e10340. Wesley, Y. (2007). Why women want children: Defining the meaning of desire for children and the construction of an index. Journal of National Black Nurses’ Association, 18, 14–20. WHO. (2013). Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection: Recommendations for a public health approach [Online]. WHO Press. Available: http://apps.who.int/iris/ bitstream/10665/85321/1/9789241505727_eng.pdf?ua=1. Accessed 4 Oct 2015. Wilson, S. (2007). ‘When you have children, you’re obliged to live’: Motherhood, chronic illness and biographical disruption. Sociology of Health & Illness, 29, 610–626. Wood, S. A., Tobias, C., & Mccree, J. (2004). Medication adherence for HIV positive women caring for children: In their own words. AIDS Care, 16, 909–913. Young, S., Wheeler, A., Mccoy, S., & Weiser, S. (2014). A review of the role of food insecurity in adherence to care and treatment among adult and pediatric populations living with HIV and AIDS. AIDS and Behavior, 18(Suppl 5), S505–S515.

CHAPTER 4

Methodology—Adherence Among Pregnant Women with and without HIV Infection

4.1

Introduction

In the previous chapter, I presented the methodology, and results of the in-depth interviews which examined the perspectives and experiences of HIV-positive pregnant and postpartum women, and healthcare staff, about challenges and facilitators of ART adherence. The HIV-positive women and their providers were interviewed at primary care clinics using an open-ended question format. Among the findings discussed were variations in adherence patterns during pregnancy and postpartum, and that children were the primary contributing factor to the women’s adherence. In this chapter, I will describe the methodology for the quantitative study examining adherence among HIV-positive and negative pregnant women.

4.2

Study Objective

The objective of this study was to identify the factors contributing to women’s adherence to ART in Guyana. The first phase entailed a systematic review of the literature to understand the global knowledge base on ART adherence among HIV-positive pregnant women and investigated any relevant studies from the region. The second phase gathered data from key informants (pregnant and postpartum women and healthcare providers). Drawing from both the research literature and the findings from the in-depth interviews, a cross-sectional descriptive study of © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 D. Vitalis, Adherence to Antiretroviral Therapy among Perinatal Women in Guyana, https://doi.org/10.1007/978-981-15-3974-9_4

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pregnant women was undertaken and included three sub-studies: (1) investigated general adherence to pregnancy-related behaviors among HIV-negative and HIV-positive pregnant women; (2) compared adherence to pregnancy-related behaviors with antiretroviral adherence among HIV-positive pregnant women and (3) aimed to investigate the efficacy of a theoretical model by operationalizing the original concepts of the Health Belief Model—perceived susceptibility, perceived severity, perceived barriers and perceived benefits (Janz & Becker, 1984) to examine and predict ART adherence among HIV-positive pregnant women. 4.2.1

Research Questions

The specific research questions for the cross-sectional descriptive studies of pregnant HIV-positive and negative women were as follows: Study 1—General adherence to pregnancy health behaviours among pregnant HIV-positive and negative women. • What are the levels of prenatal vitamin supplement knowledge and vitamin use among HIV-negative and HIV-positive pregnant women and do these differ between the two groups? • What are the levels for other prenatal health behaviours (alcohol use, tobacco use and healthy nutrition) among HIV-negative and HIVpositive women, and do these differ between the two groups? • What are the predictors of vitamin knowledge, vitamin use, alcohol use, tobacco use and healthy nutrition among HIV-negative and HIV-positive women? Study 2—Factors contributing to pregnant women’s ART adherence. • What are the levels of ART adherence among HIV-positive pregnant women? • What are the relationship between the demographic, social, psychological, knowledge, and clinical factors and ART adherence? • What is the relationship between vitamin adherence and ART adherence?

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Study 3—The utility of the Health Belief Model to examine and predict ART adherence. • What constructs of the Health Belief Model (HBM) as operationalized by the Adherence Determinants Questionnaire (ADQ) help understand and predict adherence?

4.3

Research Ethics and Governance

The study obtained ethical approval from University College London Research Ethics Committee (ID 3518/002), and the Guyana Ministry of Health Institutional Review Board (Protocol #76). Prior to administering the questionnaire, participants were given a copy of the information sheet and consent form, which were also verbally explained. Participants were apprised of the following: • They were not obliged to take part in the study • They could withdraw from the study at any time without any negative repercussions to their care at the site • They could refuse to answer any question without having to provide a reason • Their names and other personal identifiers would not be used in any public documents Participants were encouraged to ask questions before and after the interview and given a local contact number (printed on the consent form and information sheet). All documents were secured in a locked file cabinet. Information provided has been kept in confidence to comply with the UK Data Protection Act, 1988.

4.4

Methods

4.4.1

Study Design

A cross-sectional survey to: (1) compare general adherence to medication and health behaviours (prenatal vitamins, alcohol, tobacco and diet) between HIV-negative and HIV-positive pregnant women; (2) determine levels of ART adherence and its predictors among HIV-positive women;

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(3) compare ART adherence with general health adherence among HIVpositive women and (4) test the constructs of a theoretical model to understand and predict adherence. The study population included HIVnegative and HIV-positive pregnant women on ART attending primary care clinics in Guyana, South America. 4.4.2

Sample Size and Sampling Strategy

A sample size of 200, 100 HIV-negative and 100 HIV-positive women was calculated to be adequate. The sample size of 100 HIV-positive women provided sufficient power of 80% with a significance level of 5% to detect an association with the adherence rate, if the predictor of adherence has 50% prevalence and women without the predictor are 80% adherent, while those with the predictor are 99% adherent. The original study design had proposed random sampling selection of the women. However, the realities on the ground of few HIV-positive women enrolled at the sites necessitated using a convenience sample of all available eligible women. Health facilities in Regions 3, 4 and 6 had many of the required participants during the study period. Eligible women attending clinic during that time were recruited to achieve a broadly representative sample of the study population. 4.4.3

Study Setting and Inclusion Criteria

Interviews were conducted at 11 clinics within Regions 3, 4 and 6. Region 3 interviews took place at the West Demerara Regional Hospital; Region 4 interviews were at Campbellville Health Centre, Dorothy Bailey Health Centre, Georgetown Public Hospital, Beterverwagting Health Centre, East La Penitence Health Centre, Davis Memorial Hospital and Mercy Hospital; Region 6 interviews were conducted at New Amsterdam Health Centre, Cumberland Health Centre and Bohemia Health Centre. Eligibility included participation in the PMTCT programme for HIVpositive women, or enrolment in regular antenatal clinic for those who were HIV-negative. In addition women had to be at least 16 years of age, capable of completing a questionnaire in English, and able to provide consent. Eligibility criteria initially included being on ART for at least one month. However, this was modified to include women on ART from at least one week due to time constraints and few HIV-positive women enrolled at the sites as previously discussed.

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Recruitment Process

Participants were recruited during routine clinic appointments. Women fulfilling the pre-specified inclusion criteria were invited to participate in the study by the nurses, then referred to the researcher for further information. The researcher provided verbal and written information about the nature and purpose of the study. Participants gave written informed consent and received copies of the information sheet and consent form. Interviewer-administered questionnaires were completed in a private room during the participants’ clinic session, or if not feasible, an appropriate date and time would be negotiated for the same venue. Out of the 112 HIV-negative women approached, four declined (3.6%), resulting in 108 interviews, while there were three refusals (2.7%) among the 111 HIV-positive women approached as eligible, resulting in a sample of 108 with an overall 3.1% refusal rate and a 96.9% inclusion rate.

4.5

Data Collection

Data was collected between August 2012 and 2013. A PMTCT social worker resident in Region 6 was recruited as the field worker for that Region, located approximately 66 miles (107 km) from the Capital city of Georgetown. Data collection consisted of questionnaires in English which did not require translation into other languages. The HIV-negative pregnant women completed one questionnaire, averaging 15 minutes, while the HIV-positive pregnant women completed two questionnaires (general questionnaire identical to that of the HIV-negative women plus a second HIV specific adherence information questionnaire), averaging 45 minutes. 4.5.1

Development of Instruments and Field Testing

The consent forms, participant information sheets and data collection instruments were developed as follows: • They were designed based on published studies in the literature with input and oversight from the supervisory team • They were reviewed by the supervisory team • They were reviewed by two local clinic nurse supervisors for appropriateness and comprehension

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• The revised tools were piloted with six local persons (3-healthcare staff, 2-pregnant women and 1-lay person) • The tools were updated, and the refined versions submitted for final supervisory approval • The tools did not have to be translated into other languages, since English is the country’s primary language 4.5.2

Measures

The data collection instruments were compiled from several validated and study specific measures that included: (a) demographics; (b) general beliefs about medications (BMQ-G12); (c) depression and anxiety (PHQ); (d)domestic violence (HITS); (e) healthy nutrition, (f) knowledge and use of prenatal vitamins; (g) alcohol and tobacco use; (h) posttraumatic stress (PCL-C); (i) physical and emotional symptoms of HIV (MSAS-SF); (j) coping with HIV (Brief Cope); (k) health beliefs and attitudes towards ART (ADQ); (l) quality of life with HIV (HIVQoL); (m) HIV general knowledge and beliefs, (n) HIV treatment knowledge and (o) ART adherence (AACTG instruments). The finalized study instruments comprised two questionnaires—a general questionnaire inclusive of demographic characteristics for both HIV-negative and HIV-positive women, and an ART adherence questionnaire for only HIV-positive women. 4.5.2.1 Demographics Demographic items included: age; race (African, Amerindian, East Indian, Chinese, Mixed, Portuguese, White and Other); religion (Christian, Hindu, Muslim, Rastafarian, None and Other); education (Nursery/Kindergarten, Primary, Secondary, Post-secondary, University, None and Other); marital status (Married, Single, Common-law, Separated, Widowed and Divorced); main source of income (Employment, Remittances, Pension, Savings, Disability benefits, Partner support and Other); type of job (Housewife, Domestic, Cleaner, Security guard, Hairdresser, Teacher, Clerk and Other); frequency of payments for primary job (Daily, Weekly, Fortnightly and Monthly); Salary; health insurance (Yes or No); type of health insurance (National Insurance Scheme, Private, Employer, Foreign and Other); number of people living in household;

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number of children less than 18-years living in household; type of household (Home ownership, Renting, Rent-free, Living with friends, Living with family and No permanent residence); region of residence (Regions 3, 4 and 6). 4.5.2.2 General Beliefs About Medicine Questionnaire General beliefs about medications were measured using the Beliefs about Medicines Questionnaire (BMQ-G12). According to studies by Horne et al. (1999) and Horne et al. (2004) people’s beliefs about medications affect how they comply with them. This 12-item scale, with Likert responses of 1 (strongly disagree) to 5 (strongly agree) compared personal views about medication in general between HIV-negative and HIV-positive women. The BMQ-G12 consists of three 4-item subscales: general overuse (views on how doctors prescribe medications); general harm (perceptions on whether medications are inherently harmful); and general benefit (the positive effects of medication). Each of these subscales can be summed for total scores ranging from 4 to 20, or as a total score of all three scales, with higher scores indicating stronger beliefs. The scale has been reliable for different types of illnesses and populations. Cronbach’s alpha for the harm, overuse and benefits subscales were 0.62, 0.72 and 0.62, respectively. 4.5.2.3

Depression and Anxiety—The Brief Patient Health Questionnaire (PHQ) The Brief Patient Health Questionnaire (Spitzer et al., 1999) is a selfadministered validated questionnaire for depression and anxiety modelled on the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (Spitzer et al., 1999). The 15-item Likert scale has subscales for anxiety and depression. The nine depression items were prefaced by “over the past 2 weeks, have you been bothered by any of the following problems” with responses ranging from 0 (not at all) to 3 (nearly every day). The anxiety/panic disorder subscale inquired about anxiety attacks in the past 4 weeks, using 5 questions with yes or no responses. Total scores for depression can range from 0 to 27, with depression severity scores of 1–4 (minimal), 5–9 (mild), 10–14 (moderate), 15–19 (moderate severe) and 20–27 (severe). The PHQ has been validated in primary care settings and among various racial/ethnic groups (Huang et al., 2006; Lowe et al., 2004; Martin et al., 2006).

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4.5.2.4 Domestic Abuse/Violence—The HITS Scale The Hurt, Insult, Threaten and Scream (HITS) 4-item questionnaire was originally developed by Sherin et al. (1998) to screen for domestic violence. It is a four item, 5-point scale ranging from 1 (never) to 5 (frequently) for a score of 4–20. HITS can be easily administered in primary care settings, and has been used with all types of populations. Cronbach’s alpha is 0.80 (Chen et al., 2007; Punukollu, 2003). 4.5.2.5 The Prenatal Health Behaviour Scale The prenatal health behaviour scale is a 24-item measurement developed by DeLuca and Lobel (1995) to assess health behaviours such as smoking, nutrition and exercise among pregnant women. It is a 5-point Likert scale ranging from 0 (never) to 4 (always) about behaviours engaged in over the past two weeks. This scale was found to be reliable in other studies (Lobel et al., 2000, 2008). The scale was modified for use in this study, with a total of four questions on diet only, since some of the other health behaviour items were already incorporated in other measures of the questionnaire. The four questions included: eating a balanced diet; drinking milk and eating dairy products; eating more food than needed and skipping meals with a minimum score of zero and a maximum score of 16. 4.5.2.6 Knowledge and Use of Prenatal Vitamin Supplements Knowledge and use of prenatal vitamins was determined with the following questions from a study by Cleves et al. (2004): “Doctors recommend that women take a multivitamin (iron/folic acid) during pregnancy for which of the following reasons?” Responses included: “to prevent high blood pressure;” “to prevent birth defects and anaemia (weak blood);” “to make strong bones;” “some other reason” and “don’t know”. Women who selected “to prevent birth defects and anaemia (weak blood)” were considered to have correct knowledge of the benefits of multivitamin use during pregnancy. Use of prenatal vitamins (iron and folic acid) was assessed with the question: “In the past month, how often, if at all have you taken your iron tablets, iron syrup or sprinkles?” Potential responses included “every day”, “5 or 6 days a week”, “3 or 4 days a week”, “1 or 2 days a week” and “not at all”. Women who took their supplements at least “1 or 2 days a week” were considered to be taking it at least weekly.

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4.5.2.7 Alcohol and Tobacco Use Substance use was assessed with items from the ACTG adherence/psychosocial factors questionnaire by the AIDS Clinical Trials Group (Chesney et al., 2000). Alcohol use was determined by querying participants: “During the past 30 days, how often have you had a drink containing alcohol—beer, wine, a mixed drink, or any kind of alcoholic beverage?” Possible responses ranged from 0 (never) to 6 (daily). Tobacco use was measured with the question: “When was the last time you used tobacco (cigarettes, cigars)?” Responses ranged from 0 (never used) to 3 (within the past month). 4.5.2.8

The Post-Traumatic Stress Disorder Checklist Civilian Version (PCL-C) Post-traumatic stress disorder associated with highly stressful events such as wars and natural disasters has now been linked with poor adherence to ART (Sherr et al., 2011; Sledjeski et al., 2005; Vranceanu et al., 2008). PTSD can occur from being directly or indirectly involved in a traumatic event. The PTSD checklist (PCL-C) developed in 1993 and updated in 1994 to reflect the DSM-IV categories consists of 17 items (Weathers et al., 1999). It includes a 5-point Likert scale ranging from 1 (not at all) to 5 (extremely) for each symptom experienced in the past month (Weathers et al., 1999). Scores for the PCL-C scale ranged from 17 to 85 with a cut-off score of 44 to identify persons with PTSD. Being diagnosed with HIV can trigger an episode of PTSD which can adversely affect treatment compliance (Martinez et al., 2002; Safren et al., 2003). 4.5.2.9

Physical and Emotional Symptoms of HIV—The Memorial Symptom Assessment Scale, Short Form (MSAS-SF) The Memorial Symptom Assessment Scale Short Form (MSAS-SF) is an abridged version of the original MSAS (Portenoy et al., 1994). It is a validated 32-item scale assessing 28 physical and four psychological symptoms which have occurred in the past week. An additional four items (feeling hopeful/optimistic, feeling happy and feeling confident) were added to reflect positive mood; and an item on suicide ideation based on the work of Warner et al. (2004) and Sherr et al. (2008). Responses for the physical symptoms range from 0 (not at all) to 4 (very much); while responses for the psychological symptoms range from 1 (rarely) to 4 (almost constantly) (Portenoy et al., 1994). MSAS-SF (Table 4.1) is comprised of three subscales (Portenoy et al.,

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Table 4.1 Cronbach’s alpha—MSAS-SF

Dimension MSAS-PHYS MSAS-PSYCH MSAS-GDI Positive mood Full scale

# Items 12 6 10 3 36

Cronbach’s alpha ( α) 0.73 0.71 0.73 0.62 0.82

1994): (1) Global distress index, an average of four psychological symptoms (feeling sad, worrying, feeling irritable and feeling nervous) and six physical symptoms (lack of appetite, lack of energy, pain, feeling drowsy, constipation and dry mouth); (2) physical symptoms (lack of appetite, lack of energy, pain, feeling drowsy, constipation, dry mouth, nausea, vomiting, change in taste, weight loss, feeling bloated and dizziness) and (3) psychological symptoms (worrying, feeling sad, feeling nervous, difficulty sleeping, feeling irritable and difficulty concentrating). The scale has been used among cancer patients as well as HIV/AIDS patients (Chang et al., 2000; Cheng et al., 2009). Internal consistency for the modified scale was good (α = 0.83). The physical symptom subscale (PHYS) score is the average score for 12 physical symptoms (lack of appetite, lack of energy, pain, feeling drowsy, constipation, dry mouth, nausea, vomiting, change in taste, weight loss, feeling bloated and dizziness). Scoring for the scale is based on increments of 0.8, with zero for no symptoms, and a score of 4 if the symptom is present and very distressful. The psychological symptoms (PSYCH) subscale score is the average of six psychological symptoms (worrying, feeling sad, feeling nervous, difficulty sleeping, feeling irritable and difficulty concentrating). Scoring is based on increments of one, with zero for no symptoms to a maximum score of four if the symptom is present and experienced constantly. The global distress index (GDI) measures overall symptom distress. Total scores are based on the average of four psychological symptoms (feeling sad, worrying, feeling irritable and feeling nervous) and six psychological symptoms (lack of appetite, lack of energy, pain, feeling drowsy, constipation and dry mouth).

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4.5.2.10 Coping with HIV—The Brief Cope The Brief Cope was developed to assess how persons respond to stressful events (Carver, 1997; Carver et al., 1989) for all types of illnesses. In this study it measured coping with the stress of being HIV-positive over the past month and consisted of 28 questions (14 categories, 2 items each) on a 4-point scale, with responses from 1 (I haven’t been doing this at all) to 4 (I have been doing this a lot). The 14 categories are active coping, planning, positive reframing, acceptance, humour, religion, emotional support, instrumental support, self-distraction, denial, venting, substance use, behavioural disengagement and self-blame (Carver, 1997; Carver et al., 1989). There is no composite coping score, but comparisons can be made on the individual subscales. Stress and the inability to cope adversely affects the immune system contributing to the advancement of HIV disease (Balbin et al., 1999; Lutgendorf et al., 1998). Meyer (2001) sub-divided the scale into adaptive (dimensions 1–8) and maladaptive (dimensions 9–14). 4.5.2.11

Health Beliefs and Attitudes—Adherence Determinants Questionnaire (ADQ) Health beliefs and attitude constructs of the Health Belief Model (HBM) were assessed with the ADQ. The ADQ was initially validated to evaluate issues related to cancer control by DiMatteo et al. (1993). It is comprised of seven subscales and 38 Likert scale statements ranging from 1 (strongly disagree) to 5 (strongly agree). The seven subscales are interpersonal care and relationship with healthcare providers, perceived utility of treatment, perceived severity of illness, perceived susceptibility to illness progression, subjective norms (beliefs that family and friends support adherence to treatment plan), intentions to comply with treatment and support/barriers to adherence (DiMatteo et al., 1993). Cronbach’s alpha of internal consistency for the subgroups ranged from 0.65 to 0.85 (DiMatteo et al., 1993). Since the original ADQ was designed for patients with cancer, question 15 (I believe that my treatment plan will prevent me getting cancer again) and 21 (The chances I might develop cancer again are pretty high) were omitted, while questions 17–20 were modified (there are many diseases more severe than HIV; HIV is not as bad as people say; HIV is a terrible disease and there is little hope for people with HIV ) to reflect HIV dynamics, resulting in a 36-item scale. In addition to the four HBM constructs, two other ADQ constructs, namely, Interpersonal aspects of care and Intentions to adhere with the

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treatment plan were assessed for predictors of adherence. The construct “Intentions” of the ADQ is a component of the Integrated Behavioural Model (IBM) conceptualized by Fishbein and Ajzen (Ajzen & Fishbein, 1977; Fishbein, 2008) from multiple theories (HBM, Social cognitive, Reasoned action and Planned behaviour). The HBM posits that intention, attitude, perceived norms, perceived behavioural control and behavioural beliefs are the contributing factors towards behaviour change of which behavioural intention plays a key role (Fishbein, 2008; Fishbein et al., 2003). Fishbein (2008) defines “Intention” as the willingness to execute a particular behaviour and that the higher these expectations, the more likely it is that the person will implement the behaviour. However, he cautions that a strong intent may not lead to a desired outcome since unexpected barriers (personal, environmental) could impede an individual’s intent. Studies that have examined factors associated with adherence have identified interpersonal aspects of care, such as the patient–provider relationship as a key variable to facilitate adherence (Chesney et al., 2000; Ickovics & Meade, 2002; Remien et al., 2003). Adherence is probably certain to happen if the person has a positive relationship with a health care provider who also shows an interest in managing their illness (Blackwell, 1992). The internal consistency reliability coefficient for the seven subscales was α = 0.48 shown in Table 4.2. To enable ease of assessment among the subscales, scores were linearly transformed to a 0–100 scale.

Table 4.2 Cronbach’s alpha for ADQ constructs

ADQ constructs Perceived severity Perceived susceptibility Perceived benefits Perceived barriers Intentions Interpersonal aspects of care Full instrument

No. of items

Cronbach’s alpha

4 3

α = 0.30 α = 0.50

4 4 4 8

α α α α

= = = =

0.10 0.35 0.29 0.61

α = 0.48

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ADQ Subscales The ADQ perceived susceptibility subscale consisted of three questions which included “No matter what I do, there’s a good chance of my HIV getting worse”. Two of the three items were reverse scored, where higher scores indicated greater perceived susceptibility to advanced HIV disease. The perceived severity of HIV as a condition comprised four questions such as “There are many diseases more severe than HIV”, of which two items were reverse scored to yield a total score where higher scores represented higher perceived severity of HIV disease. The perceived benefits of ART medication construct consisted of four questions to determine benefits of ARV treatment such as “The benefits of my treatment plan outweigh any problems I might have in following it”. Two of the four items were reverse scored to yield a total score in which higher scores represented higher perceived benefits of taking ART medication. Perceived barriers of ART construct comprised four questions such as “Lots of things get in the way of following my treatment plan”, of which two were reverse scored, where higher values represented higher perceived barriers to adhering to the ART treatment plan. The intentions to adhere to ART construct comprised four questions which included “I have made a commitment to follow my treatment plan”, of which two were reverse scored. Higher values indicated stronger intentions to adhere to the ART treatment plan. Finally, the interpersonal aspects of care construct consisted of eight questions such as “The doctors and other health staff treat me in a very friendly and courteous manner”. Four items were reverse scored, where higher scores indicated greater perceived perceptions of the type of care and treatment received from health care staff. Reverse scoring was used to guard against participants’ indicating one type of response. Coding was adjusted to obtain a single score reflecting the overall direction of the item. The ADQ subscales and associated items utilized in this study are outlined in Table 4.3. 4.5.2.12

Quality of Life—HIV/AIDS-Targeted Quality of Life Questionnaire (HAT-QoL) The HIV/AIDS-targeted quality of life instrument (HAT-QoL) was initially developed by Holmes and Shea (1997) with nine quality of life dimensions and total of 42 items. It was subsequently revised by Holmes and Ruocco (2008) with the same number of categories, but reduced to 34 items. For this study, a two-item dimension on sexual function was not included since this was assessed in the MSAS. The final instrument

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Table 4.3 Adapted ADQ scale HBM constructs of ADQ

Scale item

Perceived susceptibility

1. I expect to be free of HIV in the futurea 2. No matter what I do, there’s a good chance of my HIV getting worse 3. My body will fight off HIV in the futurea 1. There are many diseases more severe than HIVa 2. HIV is not as bad as people saya 3. HIV is a terrible disease 4. There is little hope for people with HIV 1. The benefits of my treatment plan outweigh any problems I might have in following it 2. My treatment plan is too much trouble for what I get out of ita 3. Because my treatment plan is too difficult it is not worth followinga 4. Following my treatment plan is better for me than not following my treatment plan 1. Lots of things get in the way of following my treatment plan 2. I need more assistance in order to follow my treatment plan 3. I get the help I need to carry out my treatment plana 4. I am able to deal with my problems in following my treatment plana Item 1. I have made a commitment to follow my treatment plan 2. Following my treatment plan is not in my plansa 3. I intend to follow my treatment plan 4. I have no intentions of following my treatment plana 1. The doctors and other health staff sometimes ignore what I tell thema 2. The doctors and other health staff listen carefully to what I have to say 3. The doctors and other health staff answer all my questions 4. Sometimes the doctors and health staff use medical terms without explaining what they meana

Perceived severity

Perceived benefits

Perceived barriers

Other ADQ constructs Intentions

Interpersonal aspects of care

(continued)

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Table 4.3 (continued) HBM constructs of ADQ

Scale item 5. I trust that the doctors and other health staff have my best interest at heart 6. The doctors and other health staff act like I’m wasting their timea 7. The doctors and other health staff treat me in a very friendly and courteous manner 8. The doctors and other health staff show little concern for mea

a Item reverse scored

Table 4.4 Cronbach’s alpha for HAT-QoL

Dimension Overall function Life satisfaction Health worries Financial worries Medication worries HIV mastery Disclosure worries Provider trust Full scale

# Items 6 4 4 3 5 2 5 3 32

Cronbach’s alpha ( α) 0.79 0.69 0.84 0.89 0.62 0.75 0.78 0.65 0.87

consisted of 32 items and inquired about “how the virus has affected your daily life during the past month”. Responses ranged from 1 (all the time) to 5 (none of the time). Eight questions were reverse scored: Overall function—“in the past 4 weeks, I’ve been satisfied with my physical activity”; all four questions in the Life satisfaction dimension; and all three questions in the Provider trust subscale. The total score was obtained by adding the responses of the individual dimensions, with higher scores indicating higher quality of life. To facilitate comparison among the subscales, the sum of the responses was linear transformed to a 0–100 scale. Cronbach’s alpha for five of the eight dimensions was robust (Table 4.4), with good internal consistency for the remaining three items (life satisfaction, α = 0.69; medication worries, α = 0.62 and provider trust, α = 0.65).

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4.5.2.13 The HIV General Knowledge Scale The HIV knowledge scale (Appendix L, Sect. 11) had 15 items testing HIV and AIDS knowledge, with responses of true, false and don’t know. It was adapted from multiple sources (Ananth & Koopman, 2003; Balfour et al., 2010; Carey & Schroder, 2002; Humana, 2002; Iliyasu et al., 2006; Messiah et al., 1998). Although multiple sources were consulted for appropriate questions, only those that were relevant for the population at the time of the study were selected. Correct answers for the questions were as follows—True (8) and False (7). Don’t know answers were graded as being incorrect. The 15-item knowledge scale had good internal consistency with a coefficient alpha of 0.71. Each correct response was awarded a score of “1”, while incorrect or “don’t know” responses were assigned a score of “0”. A total score was obtained from the sum of all correct responses. 4.5.2.14 The HIV Treatment Knowledge Scale The HIV treatment knowledge scale (20 questions) was adapted from a validated 21-item questionnaire (Balfour et al., 2010) with true, false and don’t know responses. These questions were used to gauge knowledge about ART, side effects and the immune system. Correct answers for the questions were as follows—True (9) and False (11). Don’t know answers were graded as being incorrect. Internal consistency for the final 20-item scale was good (α = 0.75). Each correct response was awarded a score of “1”, while incorrect or “don’t know” responses were assigned a score of “0”. A total score was obtained from the sum of all correct responses. 4.5.2.15 ART Medication Adherence AACTG Adherence Instruments The Adult AIDS Clinical Trials Group (AACTG) adherence instruments were used as a self-reported measure of adherence (Chesney et al., 2000). These instruments were designed by a group of researchers and healthcare providers in the United States (U.S.), and have been widely used in the U.S. and internationally (Jaquet et al., 2010; Mo & Mak, 2009; Murphy et al., 2004; Power et al., 2003; Reynolds et al., 2004; Schonnesson et al., 2007; Sethi et al., 2003; Simoni et al., 2006). An adapted version of the instruments was used in this study as described below.

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ART Adherence Measures for This Study Adherence in this study was measured through self-reports (Ndubuka & Ehlers, 2011; Teshome et al., 2015) and utilized three ordered categories of adherence: “recent non-adherence; recent adherence, but distal non-adherence; and always adherent” (Vitalis, 2017). Although there was a short recall period of four days and the weekend, participants were also queried on an extended period of non-adherence of three months. Respondents were queried on ART medication use during the four weekdays and weekend prior to the interview, and a global question on the last time missed (distal non-adherence). Recent non-adherence was classified as non-adherence during the past four days or weekend prior to the interview. Participants were asked to respond to the question: “During the past 4 days, on how many days have you missed taking all your doses—None; 1-day; 2-days; 3-days; 4-days?” and “Did you miss any of your HIV medications last weekend—Yes, No?” (Chesney et al., 2000) Participants who reported missing 1, 2, 3 or 4 weekdays and “Yes” to the weekend question were coded as being recently non-adherent. “Recent adherence, but distal non-adherence” referred to those who did not miss doses in the past four days or weekend but missed anywhere from the past week to three months (Vitalis, 2017). Questions included the past 4 days and weekend questions above, plus “When was the last time you missed any of your HIV medications—within the past week; 1–2 weeks ago; 2–4 weeks ago, 1–3 months ago; more than 3 months ago; never skipped/missed medications” (Chesney et al., 2000). Participants who reported “none” for past 4 days and “No” for the weekend but missed any period from the past week to three months were coded as being recently adherent, but distal non-adherent. Finally, always adherent meant participants reported never missing doses during the last 4 weekdays, weekend and from the past week to 3 months. Participants who reported “none” to the past 4 days, “no” to the weekend, and “never” to the last time missed questions were coded as always adherent (Vitalis, 2017).

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4.6 4.6.1

Analysis

Data Management and Quality Control

All questionnaires were labelled with a unique participant identification number, and included the clinic name, region, date and time of interview. The researcher reviewed each completed questionnaire for missing data and inconsistencies. Once resolved, the questionnaire was filed in a secure location. All forms with personal identifiable information were kept in separate files from the data collection forms. The author entered the pre-coded questionnaire data into an Epi-Info, version 7.1.0.6 database (CDC, 2012). The entries in the database were double-checked by two university students. Any discrepancies found were cross-checked against the relevant questionnaire and corrected as warranted. No missing data was identified during this exercise. The data set was then transferred to Microsoft Excel (2010) and subsequently imported into Stata for further management and analysis. The final data set was further scrutinized in Stata. The researcher checked the continuous variables for outliers and other inconsistencies using tabulations and cross-tabulations. Histograms were used to check outliers for numerical variables and to assess normal distributions. Inconsistent data was corrected or coded as missing after cross-checking against original questionnaires. 4.6.2

Statistical Analysis

Data analysis was completed with Stata-IC, version 13.1 (StataCorp, 2014). Categorical variables with several groups were simplified when appropriate by merging categories: When necessary continuous variables were categorized and the choice of categories was based on studies in the literature or otherwise selected to suit the distribution in the study. The normality of the distributions for continuous variables was assessed with q-q plots, histograms and the Shapiro–Wilk test. Non-parametric tests were used whenever variables violated the assumptions of parametric tests. Multiple regression models for Chapters 6 and 7 were set up to examine the relationship between several independent (predictor) variables and each dependent (outcome variable) together, and to determine which

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independent variables best predicted the outcome after adjusting for other factors. Initial univariate testing was done to identify the explanatory variables that seemed associated with the outcome, and all those with a p-value of less than 0.1 were included in the regression models. Results were presented as odds ratios (OR) or coefficients (β) with 95% confidence intervals (CI). All other associations were considered significant at p < 0.05. The statistical methodologies for Chapters 5–8 are presented below. Chapter 5 The distributions of explanatory variables (sociodemographic, pregnancyrelated, psychological, health behaviours and general HIV knowledge) were summarised for HIV-negative and HIV-positive women separately. For categorical variables, percentages are displayed, and for continuous variables means with standard deviations (SD), or medians with interquartile range (IQR). To test for a different distribution between HIV-negative and HIV-positive women the independent samples t-test or the Wilcoxon Mann–Whitney test was used for continuous variables. For categorical explanatory variables, the chi-square test or Fisher’s exact test was used as warranted. Chapter 6 The outcomes analysed in this chapter were as follows: prenatal vitamin knowledge, prenatal vitamin use, alcohol use and tobacco use (binary); and healthy eating (continuous). Explanatory factors included: sociodemographic (age, race, religion, marital status); pregnancy (gestation, parity); psychosocial (domestic violence, depression, suicidal ideation); health behaviour (prenatal vitamin intake, healthy eating, general beliefs in medicine, prenatal vitamin knowledge and alcohol and tobacco use). Chi-square or Fisher’s exact tests were performed to test associations between categorical explanatory and outcome variables. The independent samples t-test, or the non-parametric equivalent Wilcoxon rank-sum (Mann–Whitney) test were used to test the association between binary explanatory variables and the continuous outcome variable. One way analysis of variance (ANOVA) was used to test the association between a categorical explanatory variable and the continuous outcome. Multiple logistic regression was used to assess which factors may determine each of the binary outcomes (a separate model for each) and multiple linear regression was used to assess which factors may determine healthy eating habits.

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Chapter 7 The outcome analysed in this chapter was ART adherence (ordinal). Explanatory factors included: sociodemographic (age, race, religion, marital status); pregnancy (gestation, parity); psychosocial (domestic violence, depression, suicidal ideation, PTSD, coping); health behaviour (prenatal vitamin intake, healthy eating, general beliefs in medicine, prenatal vitamin knowledge and alcohol and tobacco use); HIV diagnosis, disclosure and support; ART and ART-related factors (CD4 count, type of regimen, HIV general and treatment knowledge). To test associations between categorical explanatory variables and the ordinal adherence outcome, univariate ordinal logistic regression was used. For continuous explanatory factors, Spearman’s rank correlation coefficient and test were used. Multiple ordinal logistic regression was then used to assess which factors are associated with adherence. Chapter 8 The outcome analysed in this chapter was ART adherence (ordinal) and the explanatory factors (all ordinal) were the ADQ constructs (perceived susceptibility, perceived severity, perceived benefits, perceived barriers, interpersonal aspects of care and intentions). Descriptions of the responses to the ADQ constructs were reported as numbers and percentages in each category and presented in figures. For many constructs little variability in responses was found, in the sense that almost all respondents provided responses in one of two adjacent categories, typically agree and strongly agree, or disagree and strongly disagree. Subsequently, only items of the ADQ with adequate variation in responses were tested for associations with the level of adherence using Spearman’s rank correlation coefficient and test (Vitalis, 2017).

4.7

Summary

This chapter presented the methodology for the quantitative study with detailed description of the measures used. The next chapter (Chapter 5) will delve into the characteristics of the study population.

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CHAPTER 5

Characteristics of Pregnant Women with and without HIV

5.1

Introduction

The previous chapter dealt with the methodology for the cross-sectional studies on general and ART adherence behaviours. In this first chapter for the results of the analysis of adherence among pregnant women with and without HIV, I will describe characteristics of the HIV-negative and HIV-positive women.

5.2

Characteristics of HIV-Positive and Negative Pregnant Women 5.2.1

Sociodemographic Characteristics

Age and marital status were the only two sociodemographic characteristics which differed significantly between HIV-positive and HIV-negative women (Table 5.1). HIV-positive women were older, with a median 29 years of age, while the HIV-negative women had a median age of 23 years. In terms of marital status, more HIV-negative women were in a partnered relationship than HIV-positive women.

© The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 D. Vitalis, Adherence to Antiretroviral Therapy among Perinatal Women in Guyana, https://doi.org/10.1007/978-981-15-3974-9_5

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Table 5.1 Sociodemographic characteristics Characteristic

HIV-negative (n = 108)

Region 1 Reg 3/6 Reg 4 Age 15–24 25–34 35–44 Race African Mixed East Indian Other Religion Christian Non-Christian Education None-Primary Secondary Post-Secondary—University Marital Status Single Married Common-law Employed Yes No Income—main source Family Job Partner Home ownership Owned Rental Other

HIV-positive n (%)

(n = 108)

16 (14.8) 92 (85.2)

14 (12.96) 94 (87.04)

62 (57.4) 39 (36.1) 7 (6.5)

28 (25.9) 63 (58.3) 17 (15.7)

p-value n (%)

p = 0.69

p < 0.001 p = 0.12

42 (38.9) 37 (34.3) 21 (19.4) 8 (7.4)

49 (45.4) 44 (40.7) 12 (11.1) 3 (2.8)

94 (87.0) 14 (13.0)

98 (90.7) 10 (9.3)

13 (12.0) 82 (75.9) 13 (12.0)

16 (14.8) 83 (76.9) 9 (8.3)

p = 0.59

24 (22.2) 28 (25.9) 56 (51.9)

36 (33.3) 13 (12.0) 59 (54.6)

p = 0.02

42 (39.9) 66 (61.1)

49 (45.4) 59 (54.6)

4 (3.7) 42 (38.9) 62 (57.4)

10 (9.3) 49 (45.4) 49 (45.4)

p = 0.10

58 (53.7) 35 (32.4) 15 (13.9)

65 (60.2) 25 (23.2) 18 (16.7)

p = 0.31

p = 0.39

p = 0.34

1 Regions 3 and 6 were combined since they are two urban regions with a small number of respondents.

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Table 5.2 Pregnancy-related characteristics Characteristic

HIV-negative (n = 108)

Live births (Median, IQR) Live birth groups 0 1–2 >2 Gestation (Median, IQR) Parity Primiparous Multiparous Planned/wanted pregnancy Wanted Unwanted

HIV-positive n (%)

(n = 108)

p-value n (%)

0, 0–2

2, 1–3

p < 0.001

56 (51.9) 36 (33.3) 16 (14.8) 30, 22–36

24 (22.2) 40 (37.0) 44 (40.7) 26.5, 21–32

p < 0.001

p = 0.02

56 (51.9) 52 (48.2)

24 (22.2) 84 (77.8)

p < 0.001

48 (44.4) 60 (55.6)

31 (28.7) 77 (71.3)

5.2.2

p = 0.02

Pregnancy-Related Characteristics

The number of live births differed significantly between the two groups. HIV-positive women reported more live births than HIV-negative women (Table 5.2). Forty-one per cent of the HIV-positive women had more than two children compared with 14.8% of HIV-negative women. Gestational age was higher among HIV-negative women than those who were HIV-positive. HIV-positive women reported more pregnancies than HIV-negative women. Finally, more HIV-positive women had unwanted pregnancies than HIV-negative women. 5.2.3

Psychological and Social Characteristics

Domestic violence did not differ significantly between the two groups. Although the mood disorders of depression and suicidal ideation did not differ significantly between the women, those who were HIVpositive experienced somewhat more mood disorders than those who were HIV-negative (Table 5.3).

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Table 5.3 Psychosocial characteristics Characteristic

HIV-negative (n = 108)

Domestic violence HITS-negative HITS-positive Depression None-minimal Mild Major depression Suicidal ideation No Yes

5.2.4

HIV-positive n (%)

(n = 108)

81 (96.4) 3 (3.6)

69 (94.5) 4 (5.5)

42 (38.9) 39 (36.1) 27 (25.0)

40 (37.0) 32 (29.6) 36 (33.3)

93 (86.1) 15 (13.9)

85 (78.7) 23 (21.3)

p-value n (%)

p = 0.71 p = 0.36 p = 0.15

Health Behaviour and Knowledge Characteristics

Among the health behaviours and knowledge characteristics (Table 5.4), only vitamin intake, beliefs about medication and general HIV knowledge differed significantly between HIV-positive and HIV-negative women. More HIV-positive women (82%) than HIV-negative women (68%) took daily vitamin supplements. In terms of general overuse of medication, more HIV-negative women than HIV-positive women felt that doctors prescribed too many medications. Similarly, for the general harm subscale, HIV-negative women had stronger beliefs than HIV-positive women that medications do more harm than good. However, on the general benefit subscale, more HIV-positive women, than HIV-negative women felt that there were positive outcomes (living longer and better lives) associated with taking medications. Results for HIV knowledge (Table 5.5) suggest that there is a significant difference between the distribution of HIV knowledge scores of HIV-negative women and that of HIV-positive women. HIV-positive women had a higher knowledge score than the HIV-negative women. There was high knowledge (over 80%) from both HIV-negative and HIV-positive women respectively (Table 5.5) on HIV risk factors and modes of adult HIV transmission: having many sexual partners, through a blood transfusion, and through sex without using condoms. However, both groups of women harboured misconceptions about how HIV was not transmitted, such as, mosquito bites and donating blood. In terms of

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Table 5.4 Health behaviour and knowledge characteristics Characteristic

HIV-negative (n = 108)

Experience taking pills No difficulty Unpleasant Readiness to take pills Usually always Rarely never Knowledge of prenatal vitamins Correct knowledge Incorrect knowledge Vitamin intake in past month None Weekly Daily Nutritional health behaviour Nutrition score Total score Beliefs about medicine(BMQ-G) General harm General overuse General benefit Total score General HIV knowledge Total score Alcohol use Never 1–2 times a week 1–3 times a month

HIV-positive n (%)

(n = 108)

p-value n (%)

81 (75.0) 27 (25.0)

91 (84.3) 17 (15.7)

p = 0.09

22 (20.4) 86 (79.6)

23 (21.3) 85 (78.7)

p = 0.87

70 (64.8) 38 (35.2)

70 (64.8) 38 (35.2)

p = 1.0 p = 0.05

6 (5.6) 29 (26.9) 73 (67.6) Median (IQR)

5 (4.6) 15 (13.9) 88 (81.5) Median (IQR)

12 (10–13.5) 0–16 Mean (SD)

12 (10–14) 0–16 Mean (SD)

p = 0.62

11.6 (2.0) Median, IQR 13, 12–14 15, 13–16 4–20 Median, IQR

9.7 (1.5) Median, IQR 10, 9–12 16, 15–16 4–20 Median, IQR

p < 0.001

11, 9–13 15

13, 11–14 15

96 (88.9) 0 (0) 12 (11.1)

93 (86.1) 1 (0.9) 14 (13.0)

p < 0.001 p < 0.001 p < 0.001

p = 0.68

(continued)

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Table 5.4 (continued) Characteristic

HIV-negative (n = 108)

Tobacco use Never Past month ≥ 1 year

96 (88.9) 2 (1.9) 10 (9.3)

HIV-positive n (%)

(n = 108) 87 (80.6) 1 (0.9) 20 (18.5)

p-value n (%)

p = 0.12

mother-to-child transmission, knowledge was high for two of the three modes of transmission, pregnancy and breastfeeding. Both HIV-negative and HIV-positive women did not respond with the correct answer to the question that HIV transmission could also occur during delivery. The general HIV knowledge questions (Table 5.5) that differed significantly between the two groups were as follows: Q3: It is possible to get HIV from using public toilets (F) Q5: It is possible to get HIV from mosquito bites (F) Q6: It is possible to get HIV from sharing food or utensils with a person who has HIV/AIDS (F) Q8: Using a condom every time you have sex can protect against HIV transmission (T) Q11: A woman with HIV can transmit the virus to her baby during breastfeeding (T) Q12: All pregnant women with HIV/AIDS will have babies born with HIV (F) Q13: You can always tell that a person has HIV/AIDS by just looking at him/her (F) Q15: Taking HIV medication (ARVs) can help reduce mother-tochild transmission during pregnancy (T) Beliefs about HIV differed significantly between the HIV-positive and negative women (Table 5.6). More HIV-positive than HIV-negative women believed that it was not possible to get HIV through witchcraft. Similarly, over two-thirds (71%) of the HIV-positive and 55% of HIVnegative women believed that bush medicine or herbs could not cure HIV.

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Table 5.5 HIV knowledge questions Knowledge item

HIV-negative n (%) correct

HIV-positive n (%) correct

p-value

1. It is possible to get HIV from having many sexual partners (T) 2. It is possible to get HIV from a blood transfusion (T) 3. It is possible to get HIV from using public toilets (F) 4. It is possible to get HIV from donating blood (F) 5. It is possible to get HIV from mosquito bites (F) 6. It is possible to get HIV from sharing food or utensils with a person who has HIV/AIDS (F) 7. A person infected with HIV can transmit the virus to his/her sexual partner during sex without a condom (T) 8. Using a condom every time you have sex can protect against HIV transmission (T) 9. A pregnant woman with HIV can transmit the virus to her unborn baby during pregnancy (T) 10. A pregnant woman with HIV can transmit the virus to her baby during delivery (T) 11. A woman with HIV can transmit the virus to her baby during breastfeeding (T) 12. All pregnant women with HIV/AIDS will have babies born with HIV (F) 13. You can always tell that a person has HIV/AIDS by just looking at him/her (F) 14. There is a cure for HIV/AIDS (F) 15. Taking HIV medication (ARVs) can help reduce mother-to-child transmission during pregnancy (T)

95 (87.9)

94 (87.0)

p = 0.84

96 (88.9)

101 (93.5)

p = 0.23

80 (74.1)

93 (86.1)

p = 0.03

35 (32.4)

35 (32.4)

p = 1.0

64 (59.6)

84 (77.8)

p = 0.004

86 (79.6)

102 (94.4)

p = 0.001

106 (98.2)

107 (99.1)

p = 0.56

84 (77.8)

102 (94.4)

p = 0.0004

88 (81.5)

87 (80.6)

p = 0.86

49 (45.4)

61 (56.5)

p = 0.10

87 (80.6)

101 (93.5)

p = 0.005

65 (60.2)

101 (93.5)

p < 0.001

96 (88.9)

107 (99.1)

p = 0.002

53 (49.1) 84 (77.8)

59 (54.6) 102 (94.4)

p = 0.42 p = 0.0004

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D. VITALIS

Table 5.6 HIV beliefs’ questions Beliefs’ item 1. It is possible to get HIV through a curse or obeah (witchcraft) True False Don’t know 2. The use of bush medicine/herbs can cure HIV/AIDS True False Don’t know

5.3

HIV-negative n (%)

HIV-positive n (%)

p-value

2 (1.9) 82 (75.9) 22 (22.2)

3 (2.8) 94 (87) 11 (10.2)

p = 0.05

8 (7.4) 59 (54.6) 41 (38)

5 (4.6) 77 (71.3) 26 (24.1)

p = 0.04

Characteristics of the HIV-Positive Women

The data presented in the following sections applies only to the HIVpositive women, since some questions were only relevant for this group. 5.3.1

Diagnosis and Disclosure Characteristics

Less than twenty per cent (18.5%) of the women were diagnosed with HIV in their current pregnancy at the time of interview. The median time since HIV diagnosis was 182 weeks (42 months). For over fifty per cent (56.5%) of the women, this was not their first pregnancy since diagnosis. Overall, most women (92.6%) had disclosed their HIV status to at least one person, family, friend or partner. More than one-third (35.2%) of the women did not know the HIV status of their partner. Where disclosure had taken place, friends and family were more supportive than partners (Table 5.7). 5.3.2

ART and ART-Related Characteristics

At the time of the study, all HIV-positive women had been prescribed ART. About one-third of the women (32.4%) were placed on ART for the first time during the current pregnancy. The median time period on ART was 52 weeks (12 months). Less than 50% of the women (43.4%) had CD4 counts greater than 500 cells/mm3 . The most common ARV prescribed was Atripla (75.9%), a fixed dose combination (FDC) of two

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CHARACTERISTICS OF PREGNANT WOMEN WITH AND WITHOUT HIV

Table 5.7 Diagnosis and disclosure characteristics

Characteristic HIV diagnosis (current pregnancy) Yes No Time since diagnosis (weeks) Median, IQR 1st pregnancy since diagnosis Yes No Disclosure of HIV status No Yes Disclosure to partner/spouse No Yes Disclosure to family No Yes Disclosure to friends No Yes HIV status of partner Positive Negative Don’t know Family support No Yes Friends’ support No Yes Partner support No Yes

147

HIV-positive (n/%)

20 (18.5) 88 (81.5) 182, 52–312 47 (43.5) 61 (56.5) 8 (7.4) 100 (92.6) 22 (20.4) 86 (79.6) 31 (28.7) 77 (71.3) 33 (50.0) 33 (50.0) 34 (31.5) 36 (33.3) 38 (35.2) 11 (14.3) 66 (85.7) 2 (6.1) 31 (93.9) 18 (20.5) 70 (79.6)

nucleoside analogue reverse transcriptase inhibitors (NRTI) of Tenofovir (TDF), Emtricitabine (FTC) and Efavirenz (EFV), a non-nucleoside reverse transcriptase inhibitor (NNRTI) (Table 5.8).

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D. VITALIS

Table 5.8 ART and ART-related characteristics

5.3.3

Characteristic ART prescribed in current pregnancy Yes No Time on ART (weeks) Median, IQR CD4 Median, IQR CD4 group ≤350 351–500 >500 ARV regimens Atripla Truvada + NVP Combivir + NVP 2b (AZT + Truvada + Aluvia) Combivir + LPV/r Combivir + EVF HIV treatment knowledge Median, IQR Total score

HIV-positive (n/%)

35 (32.4) 73 (67.6) 52, 5–208 441, 325–665 33 (31.1) 27 (25.5) 46 (43.4) 82 (75.9) 10 (9.3) 6 (5.6) 5 (4.6) 4 (3.7) 1 (0.9) 16, 14–17 0–20

HIV Treatment Knowledge

The median score for HIV treatment knowledge was 16. Although 93.5% of the women were aware that ARVs helped to strengthen the immune system, only 77.8% knew that drug resistance could occur if ARVs were not taken in a timely manner. Many women (98.2%) knew that ARVs could reduce the risk of mother-to-child transmission. Gaps in knowledge surrounded the use of bush/herbal medication, where only 50% of women correctly identified that using these herbs could adversely affect the effectiveness of ARVs, while 78.7% knew that taking antibiotics could not protect a person from getting HIV as illustrated in Table 5.9.

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CHARACTERISTICS OF PREGNANT WOMEN WITH AND WITHOUT HIV

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Table 5.9 HIV treatment knowledge questions Treatment knowledge

% correct n = 108

1. Once the viral load results are undetectable, HIV medications should be stopped (F) 2. If HIV medications are not taken at the right time of day, HIV drug resistance can occur (T) 3. HIV is cured when the HIV viral load blood test result is undetectable (F) 4. Condoms during sex are not needed when the HIV viral load blood test results are at undetectable levels (F) 5. It is better to take a half dose of HIV medications than stopping the HIV medications completely (F) 6. One can get infected with a drug-resistant type of HIV (T) 7. HIV medications can cause unpleasant side effects (e.g. nausea, diarrhoea vomiting) (T) 8. If sexual partners are both HIV-positive, condoms are no longer needed (F) 9. Treatments are available to reduce HIV medication side effects (T) 10. Recreational drugs (e.g. cocaine) can affect the effectiveness of HIV medications (T) 11. Providing HIV medications to a pregnant woman reduces her baby’s risk of being infected with HIV (T) 12. There currently exists an HIV vaccine that prevents HIV infection (F) 13. HIV medication can be taken at a different time of day on weekends or holidays (F) 14. The use of bush medicine could make HIV medications less effective (T) 15. It is best to stop HIV medications as soon as you feel better (F) 16. Missing a few doses of HIV pills can increase the amount of virus in the body (T) 17. After a few months it becomes less important to take HIV medications at the right time of day (F) 18. HIV medications help the body’s immune system to get stronger (T) 19. When HIV medications work well, the HIV viral load increases (F) 20. Taking antibiotic medication protects a person from getting infected with HIV (F)

93 (86.1) 84 (77.8) 60 (55.6) 84 (77.8) 62 (57.4) 24 (22.2) 90 (83.3) 94 (87.0) 86 (79.6) 90 (83.3) 106 (98.2) 40 (37.0) 101 (93.5) 54 (50.0) 104 (96.3) 92 (85.2) 96 (88.9) 101 (93.5) 86 (79.6) 85 (78.7)

n (%)

150

D. VITALIS

5.3.4

Psychosocial Characteristics

Data from the analysis of the psychosocial characteristics of quality of life (HAT-QoL), post-traumatic stress disorder (PCL-C), coping (Brief Cope) and HIV symptoms assessment (MSAS-SF) are listed in Table 5.10. 5.3.4.1 HIV Quality of Life Median scores for the HAT-QoL (Table 5.10) ranged from 20 (disclosure worries) to 100 (finance worries, medication worries, provider trust). The women had good quality of life scores in all but one dimension—disclosure worries. Table 5.10 Psychosocial characteristics

Psychosocial characteristics HAT-QoL Overall function Life satisfaction Health worries Financial worries Medication worries HIV mastery Disclosure worries Provider trust PCL-C (PTSD) score PCL-C (PTSD) PTSD-negative PTSD-positive Brief Cope Adaptive Total score Maladaptive Total score MSAS-SF Physical symptom subscale Psychological symptom subscale Global distress index Total score MSAS-SF Positive mood Total score

Median, IQR 91.7, 75–100 81.3, 62.5–100 81.3, 50–100 100, 50–100 100, 85–100 75, 50–100 20, 0–50 100, 100–100 Median, IQR 27.5 (22.5–35.5) n (%) 101 (93.5) 7 (6.5) Mean (SD) 45.2 (8.1) 16–64 21.8 (5.8) 12–48 Median, IQR 0.5, 0.13–0.93 0.9, 0–1.3 0.8, 0.3–1.3 0–4 Median, IQR 8.5, 6–11 0–12

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151

5.3.4.2 Post-Traumatic Stress Disorder The women had a median score of 27.5. A small percentage (6.5%) of the women met the criteria for PTSD (Table 5.10). 5.3.4.3 Coping In terms of the Brief Cope (Table 5.10), women tended to display more adaptive coping mechanisms, with a mean adaptive score of 45 and a mean maladaptive score of 22. 5.3.4.4 HIV Physical and Psychological Symptoms Of the 36 symptoms evaluated on the MSAS-SF, HIV-positive women reported a median of 9 symptoms. The prevalence of individual symptoms ranged from zero per cent to 91.7% (Table 5.10). Four of the 36 symptoms had over 50% prevalence: worrying; feeling hopeful; feeling confident; and feeling happy. Of the first 28 symptoms measuring distress, ≥ 50% of the women experienced highly distressful symptoms: changes in the skin; sweats; and problems with urination. For the remaining eight symptoms assessed, over 50% of the women had high frequencies for only the positive mood symptoms: feeling hopeful; feeling happy; and feeling confident (Table 5.11). The HIV-positive women obtained median scores of 0.5, 0.9 and 0.8 for the physical, psychological symptoms and global distress index respectively. 5.3.5

Adherence

Questions on adherence (Chapter 4) queried both recent (past four days, weekend) and distal adherence (last time missed in past 3 months). For recent non-adherence, the question posed was “during the past 4 days, on how many days have you missed taking all your doses?” Eighty-one per cent of women had not missed any doses, and 4.6% missed doses on all four days. There was a similar pattern of good adherence on the weekend, with a majority of the women not missing any doses on Saturday or Sunday. When asked to indicate “the last time you missed any of your HIV medications”, two-thirds (66.7%) of the women had never missed any medication, 15.7% missed in the past week and 1.9% missed over three months ago (Table 5.12).

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D. VITALIS

Table 5.11 MSAS symptom prevalence, distress and frequency Symptom

Prevalence (%)

High distressa (%)

High frequencyb (%)

Feeling happy Feeling confident Feeling hopeful Worrying Pain Feeling sad Difficulty sleeping Feeling drowsy Lack of energy Feeling irritable Feeling nervous Lack of appetite Sweats Numbness/tingling Vomiting Shortness of breath Dry mouth Dizziness Suicidal thoughts Change in food tastes Difficulty concentrating Feeling bloated Cough Nausea I don’t look like myself Swelling of arms/legs Itching Constipation Weight loss Diarrhoea Problems with urination Changes in skin Problems with sex Difficulty swallowing Hair loss Mouth sores

91.7 87.0 79.6 50.9 48.2 46.3 38.9 38.0 38.0 32.4 32.4 29.6 27.8 25.9 25.0 23.2 22.2 20.4 19.4 18.5 18.5 18.5 17.6 17.6 15.7 14.8 13.0 12.0 11.1 10.2 7.4 6.5 5.6 2.8 2.8 0

0 0 0 0 40.4 0 47.6 48.8 26.8 0 0 34.4 70.0 42.9 37.0 40.0 33.3 22.7 0 15.0 15.0 25.0 21.1 26.3 29.4 31.3 28.6 46.2 8.3 36.4 87.5 57.1 16.7 33.3 0 0

77.8 78.7 69.8 40.0 0 38.0 0 0 0 40.0 20.0 0 0 0 0 0 0 0 9.5 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0

a Per cent of women with symptoms reporting 3 “quite a bit” or 4 “very much” distress b Per cent of women experiencing symptoms of 3 “frequently” or 4 “almost constantly”

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CHARACTERISTICS OF PREGNANT WOMEN WITH AND WITHOUT HIV

Table 5.12 ART adherence characteristics

Characteristic Adherence (days missed past 4 days) None 1 day 3 days All 4 days Adherence (missed past weekend) Yes No Adherence (last time missed) Past week 1–2 weeks ago 2–4 weeks ago 1–3 months ago > 3 months ago Never missed

Table 5.13 Reasons for any missed ART medication

153

n (%)

88 (81.5) 13 (12.0) 2 (1.9) 5 (4.6) 6 (5.6) 102 (94.4) 17 (15.7) 4 (3.7) 2 (1.9) 11 (10.2) 2 (1.9) 72 (66.7)

Reason for non-adherence

n (%)a

Forgetfulness Being away from home Slept through dose time Throwing up Felt depressed/overwhelmed Felt sick To avoid side effects Busy with other things Ran out of pills Felt healthy Did not want others to see taking ART Too many pills to take Felt ART was harmful

11 (30.6) 10 (27.8) 9 (25.0) 6 (16.7%) 5 (13.9) 4 (11.1) 4 (11.1) 3 (8.3) 2 (5.6) 2 (5.6) 2 (5.6) 1 (2.8) 1 (2.8)

a Number of women greater than 36 because of multiple responses

The reasons given by the 36 non-adherent women to the question “the last time you missed any of your HIV medications” are displayed in Table 5.13. The most common reasons for missing ART medications were forgetfulness (30.6%), being away from home (27.8%) and sleeping through dose time (25%).

154

D. VITALIS

5.3.6

Health Beliefs and Attitudes to ART Adherence

Four constructs of the HBM were utilized in this study to assess health beliefs and attitudes: perceived susceptibility to disease progression; perceived severity; perceived benefits; and perceived barriers. The median score for the perceived susceptibility subscale was 6 indicating that women had a low perception of their susceptibility to disease progression; the mean score for the perceived severity of HIV was 11.2, indicating low perceived severity of HIV; the median score for perceived benefits was 16, indicating moderate perceived benefits of taking ART medication; the median score for perceived barriers was 8, indicating low perception of barriers that could adversely affect adhering to ART treatment; and the median score for intentions was 12 indicating moderate intentions to take ART.

5.4

Summary

This chapter first outlined characteristics of both HIV-negative and HIV-positive women (demographics, pregnancy, psychosocial, and health behaviours and knowledge). It was followed with pertinent information about the HIV-positive women for diagnosis and disclosure, ART and psychosocial and adherence characteristics. 5.4.1

Characteristics of Pregnant Women with and without HIV

Significant differences were observed for age, marital status, live births, gestation, parity, planned pregnancies and vitamin intake in the past month between the two groups of women. Although HIV-negative and positive women had high HIV knowledge (>80%), they still had misconceptions on how HIV was not spread (mosquitoes). In addition, they both did not answer correctly that HIV could be transmitted during delivery. 5.4.2

Characteristics of HIV-Positive Women

Over 80% of the HIV-positive women had been diagnosed prior to the current pregnancy. Overall, the majority (93%) had disclosed their status to someone other than a healthcare provider and received support from family, partner or friend. About 68% had been prescribed ART prior to the

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current pregnancy, and 76% were on a single-tablet regimen. Although a majority of the women (98%) were aware that ARVs could reduce MTCT, there were gaps in their knowledge on the effects of bush/herbal medications on their ARVs. In terms of psychosocial characteristics, HIV-positive women tended to display more adaptive coping mechanisms and there was a high prevalence (>80%) of positive mood symptoms (happy, confident and hopeful). Over 80% of the pregnant women had not reported missing doses of ART within the past four days and two-thirds never missed in the past three months. Constructs of the HBM as measured with the ADQ suggested that women did not perceive themselves vulnerable to worsening HIV disease as indicated by the low scores for perceived susceptibility and severity. Perceived barriers’ scores that could adversely impact their ART were also low. After presenting the characteristics of the study population—pregnant HIV-positive and negative women, the next chapter (Chapter 6) will present the findings of general adherence to key health behaviours in pregnancy.

CHAPTER 6

Adherence Patterns to Prenatal Vitamins and Pregnancy Health Behaviours

6.1

Introduction

Historically, adherence to treatment and care regimens has always been a challenge (DiMatteo, 2004), and this phenomenon is no different among pregnant women as was detailed in Chapter 1 and summarized in these studies (Table 6.1). However, despite these lapses in adherence behaviour, research studies indicate that most women engage in healthier habits and reduce risky behaviours like alcohol use and cigarette smoking during pregnancy (Anderson et al., 2006; Fingerhut et al., 1990; Pbert et al., 2004). Pregnant women should maintain a healthy lifestyle and adhere to health recommendations such as healthy diet, exercise, daily uptake of prenatal vitamins (iron and folate) and reduce risky behaviours, such as alcohol and tobacco use. Healthy maternal nutrition is necessary for maintaining optimal health of both mother and foetus. Pregnant women require higher consumption of protein (fish, eggs), iron (red meat, green leafy vegetables), fibre (fruits, vegetables) and calcium from dairy products (Kaiser & Allen, 2002; Ortega, 2001). Adequate maternal nutrition including folic acid and iron supplementation is essential for foetal growth and prevention of chronic disease for the mother and infant (Gardiner et al., 2008; Kloeblen & Batish, 1999; PenaRosas & Viteri, 2009). Folic acid reduces the risk of neural tube defects (birth defects of the brain and spine), while iron prevents anaemia during © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 D. Vitalis, Adherence to Antiretroviral Therapy among Perinatal Women in Guyana, https://doi.org/10.1007/978-981-15-3974-9_6

157

158

D. VITALIS

Table 6.1 Summary of studies on general adherence in pregnancy Author

Population and sample size

van Trigt et al. (1994)

Pregnant women; Cross-sectional Netherlands; 295 study; Adherence participants; to general medication, e.g. antibiotics, analgesics Pregnant women; Cross-sectional Australia; 819 study; Adherence participants to prescribed medications for chronic diseases Postpartum Cross-sectional women; Brazil; study; Adherence 130 participants to prescribed medications during pregnancy Pregnant women; Cross-sectional Multinational study; study: 18 internet-based countries; 315 participants

Sawicki et al. (2011)

Oliveira-Filho et al. (2012)

Lupattelli et al. (2014)

Methods

Measure of adherence

Results

Self-report

39% participants non-adherent

Self-report

59% participants non-adherent

Self-report

Non-adherent −81% participants

Self-report

36% participants with low adherence

pregnancy and reduces adverse pregnancy outcomes (Cleves et al., 2004; McDonnell et al., 1999; Pena-Rosas & Viteri, 2009; Scholl & Johnson, 2000). Guidelines on the use of folic acid by women of childbearing age or those who are pregnant to reduce the occurrence of neural tube defects (NTD) were issued by USA, European and other countries more than two decades ago (A.A.P., 1999; CDC, 1992; McDonnell et al., 1999). Studies have shown that the risk of NTDs can be reduced by over 50% if women consume 400ug (0.4 mg) of folic acid daily (A.A.P., 1999; CDC, 1992). In addition to daily vitamin supplementation and other lifestyle changes, the HIV-positive pregnant woman has to consistently maintain a high level of ART adherence throughout the duration of pregnancy while coping with a chronic illness and the potential risk of transmission to her baby. A study by Cohn et al. (2008) on ART adherence patterns and health behaviours during and after pregnancy found that missed prenatal

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159

vitamins were associated with non-adherence to ART. Similar findings were obtained by Wilson et al. (2001). Their study established that pregnant women who did not take all their vitamins were three times likely to be non-adherent to ART. Bardeguez and colleagues (Bardeguez et al., 2008) also reported that women who were adherent with prenatal vitamins were also likely to be adherent to their ART medication. Thus, are there differences in women’s adherence to health behaviours during pregnancy based on their HIV status, and are these health adherence behaviours linked to other similar types of behaviours, such as ART medication adherence? The objective of this chapter was to examine general health adherence to prenatal vitamin medication, and healthy behaviours (alcohol use, tobacco use and nutrition) among HIV-negative and HIV-positive pregnant women attending antenatal clinics. This initial analysis is to determine if HIV-positive women differ or are similar to HIV-negative women in prenatal and health behaviours. This will then lead to an examination of the relationship between vitamin adherence and ART adherence among HIV-positive women in the chapter on ART analysis (Chapter 7). Specifically, the research questions were as follows: • What are the levels of prenatal vitamin supplement knowledge and vitamin use among HIV-negative and HIV-positive pregnant women and do these differ between the two groups? • What are the levels for other prenatal health behaviours (alcohol use, tobacco use, and healthy nutrition) among HIV-negative and HIVpositive women, and do these differ between the two groups? • What are the predictors of vitamin knowledge, vitamin use, alcohol use, tobacco use and healthy nutrition among HIV-negative and HIV-positive women? • Subsequently, what is the relationship between vitamin adherence and ART adherence?

6.2 6.2.1

Methods Measures

A summary of the measures (knowledge and use of prenatal vitamins, healthy eating habits, alcohol use and tobacco use) utilized in this chapter is presented below since detailed descriptions are available in Chapter 4.

160

D. VITALIS

Knowledge of prenatal vitamins was determined with the following question: “Doctors recommend that women take a multivitamin (iron/folic acid) during pregnancy for which of the following reasons?” Responses included: “to prevent high blood pressure;” “to prevent birth defects and anaemia (weak blood);” “to make strong bones;” “some other reason;” and “don’t know”. Women who selected “to prevent birth defects and anaemia (weak blood)” were considered to have correct knowledge of the benefits of multivitamin use during pregnancy. Use of prenatal vitamins (iron and folic acid) was assessed with the question: “In the past month, how often, if at all have you taken your iron tablets, iron syrup or sprinkles?” Potential responses included “every day”, “5 or 6 days a week”, “3 or 4 days a week”, “1 or 2 days a week” and “not at all”. Women who took their supplements at least “1 or 2 days a week” were considered to be taking it at least weekly. The four questions which assessed nutritional health behaviour included eating a balanced diet, drinking milk and eating dairy products, eating more food than needed and skipping meals have a minimum score of zero and a maximum score of 16. Use of alcohol was measured by asking participants: “During the past 30 days, how often have you had a drink containing alcohol—beer, wine, a mixed drink, or any kind of alcoholic beverage?” Possible responses ranged from 0 (never) to 6 (daily). Tobacco use was measured with the question: “When was the last time you used tobacco (cigarettes, cigars)?” Responses ranged from 0 (never used) to 3 (within the past month). 6.2.2

Analysis

The statistical analysis for this chapter was discussed in Chapter 4, as well as in the abstract for this chapter.

6.3 6.3.1

Results

Knowledge of Prenatal Vitamins

Correct knowledge of the benefits of taking iron and folate acid during pregnancy was not associated with HIV status.

6

6.3.2

ADHERENCE PATTERNS TO PRENATAL VITAMINS …

161

Prenatal Vitamin Knowledge and Demographic Characteristics

There were no significant differences for either HIV-negative or positive pregnant women between most sociodemographic variables and vitamin knowledge. Among HIV-negative women, only one demographic variable, main source of income (p = 0.02) was significantly associated with knowledge, suggesting having a job was related to higher correct knowledge. 6.3.3

Prenatal Vitamin Knowledge and Pregnancy-Related Characteristics

None of the pregnancy-related characteristics was associated with knowledge for either HIV-negative or HIV-positive women. 6.3.4

Prenatal Vitamin Knowledge and Psychosocial Characteristics

None of the psychosocial characteristics were associated with knowledge for either HIV-negative or HIV-positive women. 6.3.5

Prenatal Vitamin Knowledge and Health Behaviour Characteristics

Among HIV-negative women, behaviour and knowledge characteristics significantly associated with vitamin knowledge were: • HIV knowledge (p = 0.0004)—higher HIV knowledge scores were associated with correct vitamin knowledge. • Belief that one cannot get HIV through a curse or obeah/witchcraft (p = 0.01); women who rejected this belief (72%) were more likely to have correct vitamin knowledge in contrast with the other groups (≤46%). Among HIV-positive women, behaviour and knowledge characteristics significantly associated with vitamin knowledge were:

162

D. VITALIS

• Beliefs about the overuse of medication in general (p = 0.01); stronger beliefs that doctors overuse medications were related to correct vitamin knowledge. • HIV knowledge (p = 0.02)—higher HIV knowledge scores were related to correct vitamin knowledge. • Belief that one cannot get HIV through a curse or witchcraft (p = 0.02)—women who rejected this belief (69%) were more likely to have correct vitamin knowledge than women in the other two categories (≤45%). • Belief that the use of bush medicine cannot cure HIV/AIDS (p = 0.01)—women who were unsure about this belief (85%) were more likely to have correct vitamin knowledge than women in the other two categories (≤61%). 6.3.6

Predictors of Prenatal Vitamin Knowledge for HIV-Negative Women

The explanatory variables included in the multivariate logistic regression model (Table 6.2) with a p-value