A Clinical Guide to Pediatric HIV (eBook)

Tiffany Chenneville, Ph.D. is an Associate Professor and Graduate Program Director in the Psychology Department at the University of South Florida St. Petersburg. She has a Joint Appointment with the USF Department of Pediatrics where she has been involved for many years as a clinician and as a researcher in the pediatric/adolescent HIV program. Historically, Dr. Chenneville’s research focused on issues of law, policy, and ethics with a particular emphasis on the decisional capacity of children with HIV to participate in treatment and research. She continues with this line of inquiry but, more recently, also has begun community-based participatory research in the area of HIV-related stigma among youth. Because HIV is a global disease, Dr. Chenneville is interested in cross-cultural research. She has worked in India and currently is working Kenya.   In addition to her research, Dr. Chenneville is collaborating with a filmmaker on a documentary about pediatric HIV. 

Preface 6
Acknowledgement 7
Contents 8
Editor and Contributors 10
1 Epidemiology of Pediatric HIV Infection 12
Epidemiology of Pediatric HIV Infection 12
Perinatal HIV Infection 12
Perinatally Infected Children 14
Natural History of HIV 14
HIV Infection Treated with ART 15
Resource-Limited Settings 16
Adolescents and Young Adults with HIV 18
Future Directions 20
Conclusion 21
Annotated Bibliography 21
References 21
2 Medical Implications of HIV Among Children and Adolescents 26
Introduction 26
The Biology and Evolution of HIV Infection 26
HIV Pathogenesis 27
Chronic Inflammation and HIV Infection 29
Clinical Course and Manifestations of HIV Infection 30
HIV Progression in the First Year of Life 30
HIV Progression After the First Year of Life 32
Slow Progressors—Late Presentation of HIV 34
Survival to Adulthood 34
Youth with Behaviorally Acquired HIV 35
Antiretroviral Therapy 36
Adherence 40
Perinatal HIV Prevention 41
Infant Antiretroviral Prophylaxis 45
Future Directions 46
HIV Vaccines and Other Therapeutic and Preventive Approaches 46
Conclusion 47
Annotated Bibliography 48
References 48
3 Developmental Considerations for Children and Youth with HIV 53
Developmental and CNS Impact of HIV 53
Perinatally Acquired HIV 53
Cognitive and Neurological Sequelae: Historical Perspective 53
Neuropathogenesis 54
Developmental Functioning in the Era of Antiretroviral Therapy 55
Global Functioning 56
Cognitive Domains 57
Executive Functioning 57
Language and Hearing 58
Processing Speed 59
Learning and Memory 59
Other Developmental Risks for Children with PHIV 60
Sociodemographic and Psychosocial Risks 60
Prenatal Exposure to HIV and ART 61
Behaviorally Acquired HIV (BHIV) 61
Functional Impact of Child and Adolescent HIV 63
Academic Outcomes 63
Medication Management 64
Adaptive and Daily Functioning 65
Substance Use and Risk Behaviors 65
Transition to Adult HIV Care 66
Prevention and Intervention for Neurodevelopmental Complications of HIV 67
Antiretroviral Therapy 67
Interventions for Developmental Delay and Impairment 70
Best Practices 70
Future Directions 71
Conclusion 71
Annotated Bibliography 72
References 72
4 Psychosocial Considerations for Children and Adolescents with HIV 83
Background 83
Current Status of Mental Health 85
Health-Related Considerations 85
Social Considerations 86
Mode of Transmission 89
Transition from Pediatric to Adult Care 90
International and Low-Resource Settings 91
Resilience and Protective Factors 92
Treatment Recommendations and Interventions 93
Conclusion 99
Annotated Bibliography 100
References 100
5 The Impact of Pediatric HIV on Families 105
Introduction 105
Epidemiology of Pediatric HIV from 1981 to 2016 106
Infants 106
Adolescents 108
Intervention Approaches 111
Delivery Sites 125
Structural Interventions 130
Conclusion 132
Acknowledgments 132
Annotated Bibliography 132
References 133
6 HIV Prevention and Intervention in the School Setting 143
Introduction 143
HIV and Youth: School-Related Considerations 145
Developmental and Academic Considerations 145
Physical/Medical Considerations 146
Social–Emotional/Behavioral Considerations 146
Legal Considerations 149
HIV-Specific Educational Policies 150
Comprehensive Policy on HIV in Schools 150
HIV and Sex Education 150
HIV Prevention and Intervention in the School Setting: A Multi-Tiered Approach 151
Level or Tier 1: Primary Prevention Efforts 151
Universal Precautions Training 151
HIV Education for School Personnel 152
Comprehensive Sexuality Education Programs 153
HIV Testing 156
Level or Tier 2: Targeted Interventions for at-Risk Groups 157
Sexually Active Youth 157
Young Men Who Have Sex with Men 158
Lesbian, Gay, Bisexual, Transgender, and Questioning Youth 158
Youth Who Are Pregnant 159
Youth Who Use Substances 159
Level or Tier 3: Individualized Interventions for Students Infected with or Affected by HIV 160
Comprehensive Psychoeducational Evaluation and Academic Support 160
Social Support 161
Individual Counseling or Psychotherapy 161
Considerations for Researchers 163
Conclusion 164
Annotated Bibliography 165
References 165
7 Antiretroviral Medication Adherence and Disease Management in Pediatric Populations 172
Overview of HIV Adherence in Youth 172
Rates of HIV and Medication Adherence in Pediatric Populations 172
Disparities in HIV Medication Adherence 173
Adherence Among Youth with Behaviorally (BaHIV) and Perinatally (PaHIV) Acquired HIV 174
Barriers and Facilitators to Antiretroviral Therapy Adherence 175
Barriers to ART Adherence in Childhood 176
Psychosocial Factors 176
Treatment Regimen 177
Facilitators to ART Adherence in Childhood 177
Treatment Regimen 178
Barriers to ART Adherence in Adolescence/Young Adulthood 178
Psychosocial Factors 178
Structural Factors 179
Treatment regimen 180
Facilitators to ART Adherence in Adolescence/Young Adulthood 180
Best Practices in Adherence Measurement 180
Self-report 181
Pill Count or Refills 182
Electronic Monitoring 183
Viral Load or CD-4 Count 184
Evidence-Based Interventions for Improving Adherence 184
Clinic-Based Interventions 185
Home-/Community-Based Interventions 186
Interventions Incorporating Technology 187
Cultural Considerations in Working with Youth Living with HIV 189
Future Directions for Research and Practice 190
Conclusion 191
Acknowledgments 191
Annotated Bibliography 191
References 192
8 HIV Disclosure in Pediatric Populations: Who, What, When to Tell, and then What? 198
Introduction 198
Disclosure of Parental HIV Status to Children 199
What Are the Patterns and Correlates of Parental HIV Status Disclosure? 199
Parental Attributes Associated with Disclosure 201
Child Attributes Associated with Disclosure 201
What Outcomes of Parental HIV Status Disclosure Do Children Experience? 202
What Guidance and Assistance is Available for Disclosure of Parental HIV-Positive Status? 203
Structured Behavioral Interventions 206
Disclosure of Child HIV-Positive Status to Child 207
What Are the Patterns and Correlates of Child HIV-Positive Status Disclosure to the Child? 208
When Should Children Be Informed of Their Status? 209
Who Should Disclose? 210
What Outcomes Do Children and Adolescents Experience After Learning They Are Living with HIV? 211
What Guidance and Assistance Is Available for Disclosure of Child HIV-Positive Status to the Child? 212
Recommendations, Tools, and Strategies 212
An Alternative Approach: Developmental Illness Models 216
Child Disclosure to Family, Friends, Romantic, and Sexual Partners 217
What are Key Developmental Considerations? 217
What are the Patterns and Correlates of Disclosure? 218
To Whom Do Youth Disclose? 218
Why Do Youth Disclose? 218
How Does Self-disclosure Vary Based on Characteristics of Youth Living with HIV? 219
What Youth HIV Illness-Related Characteristics are Associated with Self-disclosure? 220
What Parental Characteristics are Associated with Self-disclosure? 221
What are the Outcomes of Self-disclosure? 221
Social Support 221
Relationship Dynamics and Stigma 221
Self-disclosure, Secondary Prevention, and Sexual Relationships 222
Other Physical and Psychological Outcomes 222
What Available Guidance and Assistance Exists to Help Youth Disclose to Family, Friends, and Sexual Partners? 223
Recommendations, Tools, and Strategies 223
Potential for Peer-Based Approaches 224
Ethical Considerations 224
Disclosure of Child’s HIV Status to Child 225
Disclosure of HIV Status to Sexual Partners 225
Future Directions 226
Conclusion 227
Annotated Bibliography 227
References 228
9 Goodness-of-Fit Ethics for Practice and Research Involving Children and Adolescents with HIV 237
Introduction 237
Relational Ethics and Goodness of Fit 238
Informed Consent 239
Moral and Legal Frameworks 239
Developmental and Family Factors 243
Best Practices: Goodness-of-Fit Ethics for Informed Consent for HIV Intervention and Research Involving Children and Youth 243
Fitting Assent Procedures to the Child’s Cognitive and Emotional Readiness 244
Fitting Parental Permission to Parent Characteristics and Information Needs 245
The Family’s History of Shared Decision-Making for the Child’s Health-Related Matters 246
The Child’s Autonomy Strivings Balanced With Parents’ Duty and Responsibility to Make Decisions in Their Child’s Best Interest 246
Confidentiality and Disclosures 247
Moral and Legal Frameworks 247
Developmental and Family Factors 249
Best Practices: Goodness-of-Fit Framework for Confidentiality and Disclosure Decision-Making for Children and Youth with or at Risk for HIV 249
Establishing Confidentiality Limits at the Outset of Therapy 250
The Consent Conference 250
Parental Requests for Information 251
Disclosing Confidential Information in Response to Client/Patient Risk Behavior 251
Step 1: Assess and Clinically Address Risk Behaviors 252
Step 2: Consider Options if Client/Patient is Unable or Unwilling to Terminate or Reduce Behaviors 252
Step 3: Prepare Client/Patient for Disclosure 252
Step 4: Disclosing Information to Parents 252
Addressing Heath Inequities 253
Organization and Access 254
Multicultural Competence 255
Research Burdens and Benefits 256
Sexual Health 256
Initiating the Conversation 257
The Content of the Conversation 258
The Outcomes of the Conversation 259
Conclusion 260
Annotated Bibliography 260
References 261
10 Cultural Considerations for Pediatric HIV Research and Practice 267
Introduction 267
Culture 268
Culture of Youth 270
Differential Impact of HIV/AIDS Among Youth Globally 270
Cultural Barriers to Mental Health and HIV Testing 271
Cultural Beliefs and Health Practices in Relation to HIV Risk 272
Mental Disorder and Mental Health 272
Culturally Relevant Issues for Clinicians 273
Future Directions for Research and Practice 274
Conclusion 276
Annotated Bibliography 276
References 277
11 HIV Prevention Among Youth: Designing Effective Evidence-Based HIV Risk-Reduction Programs for Adolescents 280
Introduction 280
Predictors of Risk Behavior 281
Individual 281
Family 282
Relationships 282
Peers 283
Society 283
The Importance of an Ecological Approach for HIV Prevention 284
Intervention Approaches that Transcend Multiple Levels 287
Mesosystems Approaches 287
Exosystem Approaches 289
Macrosystem Approaches 290
Applied Ecological Intervention Example 291
Role of Pediatric Psychologists in STI/HIV Prevention 292
Future Research 293
Conclusion 294
Annotated Bibliography 294
References 295
12 HIV-Related Stigma and Children 303
Introduction 303
Conceptualizing HIV-Related Stigma 304
Stigma and Child Development 305
Pregnancy, Birth, and Infancy 305
Childhood 307
Adolescence and Young Adulthood 308
Case Studies: Experiencing HIV-Related Stigma as an Adolescent 310
Ryan White, Indiana, US 310
Mary, Lusaka, Zambia (16 Years Old) 311
Stigma-Reduction Interventions: What Do We Know? 312
Research Gaps 316
Conclusion 317
Acknowlegments 317
Annotated Bibliography 317
References 318
Index 322