Behavioral Approaches to Chronic Disease in Adolescence (eBook)

William T. O’Donohue, Ph.D. is Professor in the Department of Psychology and Adjunct Professor in the Department of Psychiatry at the University of Nevada, Reno. From 1999 through 2005 he was Nicholas Cummings Professor of Organized Behavioral Healthcare Delivery at the same institution. In addition, he is Director of the Victims of Crimes Treatment Center and the Sexual Assault Prevention and Counseling Services at University of Nevada, Reno. He is a member of the Association for the Advancement of Behavior Therapy and since 1999 has served on the Advisory Board of the Cambridge Center for Behavioral Studies. His areas of specialization are mental health service delivery, forensic psychology, human sexuality (treatment of victims and offenders), management and administration, behavior therapy, and philosophy of psychology.

Preface 5
Contents 6
Contributors 8
Part 1: Basic Issues 11
Introduction 12
Chapter Outline 14
Reference 15
An Introduction to Adolescent Development 16
Ecological Model of Development 16
Normative Adolescent Development 18
Physical Development 18
Cognitive Development 19
Psychosocial Development 20
Special Considerations 21
Therapeutic Alliance and Treatment Compliance 21
Comorbidity with Mental Health 22
References 22
Unique Considerations when Treating Adolescents with Chronic Illness 24
Introduction 24
Normative Aspects of Adolescence 25
Characteristics of Pubertal Changes 25
Identity and Ego Development 26
Family and Peer Relations 26
Autonomy 27
Presence of Chronic Illness 27
Diagnosis and Initial Adjustment 28
Adherence and the ‘‘Long Haul’’ 29
Autonomy in the Context of a Chronic Illness 30
Coping in the Context of a Chronic Illness 30
Treatment Considerations 31
Considerations for Adolescent-Focused Interventions 32
Considerations for Family-Focused Interventions 33
Considerations for Interventions in Schools and Other Community Settings 33
Conclusions 34
References 34
Adolescent Physiology 38
The Endocrine System 38
Puberty 39
Abnormalities in Pubertal Hormones 40
Endocrine Abnormalities in Chronic Disease 42
Asthma 42
Diabetes 42
Cancer 43
Eating Disorders 43
Cystic Fibrosis 43
Adolescent Brain Physiology 44
Overview of Cortical Development 44
The Prefrontal Cortex 45
The Limbic Lobe 45
Environmental Influence 46
Chemical Effects on Development 47
The Effects of Alcohol 48
The Effects of Antidepressants 48
Case 1 49
Arnie 49
Marie 50
Tim 52
References 53
Family Influence on Adolescent Treatment Outcomes 55
Family Influence on Adolescent Treatment Outcomes 55
Adolescent Development 56
Family Functioning 57
Family Conflict 57
Family Cohesion 57
Family Relationships 57
Expressiveness 58
Family Response to Treatment 58
Parent-Child Illness Appraisal 58
Available Family Resources 59
Family Coping Strategies 59
Parental Factors 60
Maternal Psychological Adjustment and Distress 60
Parental Overprotection 60
Conclusions and Future Directions 60
Implications for Treatment 61
References 61
Ethics and the Teen Patients 63
The Ethics of Treating Teens 64
This Beginning 65
The Middle Game 68
End Game 70
Denouement 71
References 71
Overextending the Overextended: Burnout Potential in Health-Care Professionals, Psychologists, Patients, and Family Members 73
Compassion Fatigue 74
Assessment of Burnout and Compassion Fatigue 75
Prevention of Burnout by Attending to Compassion Fatigue 76
Self-Care Strategies 76
Exercise 76
Healthy Eating Behaviors 77
Journaling 77
Meditation/Mindfulness 77
Other Self-Care Strategies 78
Work-Related Strategies 78
Assisting the Burned Out Adolescent and Family 79
Treatment of Burnout in Patients and Their Families - Case Example: Type 1 Diabetes 80
Conclusion 85
References 86
Part 2: Integrated Care Practice Guidelines 90
Type 1 Diabetes Mellitus 91
Description of Type 1 Diabetes Among Adolescents 91
Epidemiology 91
Diagnosis and Symptoms 91
Progression and Prognosis 92
Treatment Regimen 92
Glycemic Control and Short- and Long-Term Complications 93
Cost of Treatment 94
Common Problems Associated with Type 1 Diabetes Among Adolescents 94
Developmental Issues 94
Comorbid Psychological Problems 95
Social Support: Family Members and Friends 96
Family Conflict 96
Cultural and Other Considerations 97
Working with Adolescents with Type 1 Diabetes 98
Role of the Behavioral Health Clinician 98
Best Practices for Assessment 98
Initial Assessment 98
Assessment Throughout Treatment 99
Effective Psychosocial/Psychological Interventions 100
Individual Therapy 100
Family Therapy 100
Group Therapy 100
Collaboration with an Integrated Health Care Team 101
Methodological Considerations When Conducting Research 101
Measuring Glycemic Control and Treatment Adherence 101
Psychosocial Functioning 102
Summary 102
Research Agenda and Chapter Summary 102
References 103
Type 2 Diabetes in Youth 107
Description 107
Common Problems Seen in Adolescents with T2DM 109
Behavioral Health Specialists 112
Methodological Considerations 114
Research Agenda 114
References 115
Integrated Care Practice Guidelines for Adolescents with Asthma 117
What is Asthma? 117
Epidemiology 118
Symptoms of Asthma 118
What is the Treatment Approach in Asthma? 120
Common Problems Seen with Adolescents Who Have Asthma 122
Is There an Increase in Psychiatric Disorders Found in Adolescents with Asthma? 123
What is the Role of the Behavioral Health Specialist Working with Teens with Asthma? 130
References 132
Juvenile Rheumatoid Arthritis 135
Epidemiology 135
Symptoms 136
Spondyloarthropathy 136
Treatment Regimens 136
Common Problems 137
Psychosocial Adjustment of Children and Adolescents with JRA 137
School Attendance and Adjustment 138
Family Adjustment 138
Long-Term Adjustment into Adulthood 139
Chronic or Reoccurring Pain 140
Adherence to Treatment 140
Clinical and Research Implications 144
Psychosocial Adjustment 144
Pain 144
Adherence 145
References 146
Epilepsy 149
Introduction 149
Epilepsy 149
The Cost of Epilepsy 151
Prognosis 151
Morbidity and Mortality 151
Treating Epilepsy in Adolescents 151
Health Issues and Living with Epilepsy 153
Adherence to Treatment Regimens 153
Healthy Behaviors and Choices 153
Contraception and Female Health Issues 153
Behavioral Issues and Living with Epilepsy 154
Psychosocial Issues 154
Adaptation Issues 154
Family Issues 155
Treatment-Related Issues in Epilepsy 155
Patient-Practitioner Issues 155
Psychosocial Difficulties 156
Addressing Psychosocial Issues 157
Facilitating Social Support 157
Self-Management 157
Epilepsy Education Programs 158
Psychological Interventions 158
Directions for Future Work and Research Considerations 158
References 159
Migraines/Chronic Headaches 161
Headache Classifications 161
Headache Etiology 161
Biochemical 162
Stress 162
Other Considerations in Headache Disorders 162
Comorbidity 162
Cultural Considerations 163
Interventions 163
Pharmacological Interventions 163
Behavioral Interventions 163
Psychological Counseling 165
Family Counseling 165
Treatment Adherence 166
Conclusion 166
References 166
The Assessment and Management of Chronic and Recurrent Pain in Adolescents 168
The Epidemiology of Pain in Children and Adolescents 168
Chronic Pain Assessment in Adolescents 170
Physical Examination 171
General Considerations in Structured Pain Assessment 172
Interviews 172
Self-Report Measures and Integrated Scales 173
Psychometric Assessment 174
Treatment Modalities 175
Pharmacological Pain Management 175
Psychological Strategies 175
Pain Behavior Regulation 176
Changing Pain Perceptions 176
Family Intervention and Social Implications of Pain 178
Physical Interventions 178
Summary and Future Directions 178
References 179
Adolescent Depression 181
Epidemiology 181
Onset and Course 182
Clinical Presentation 183
Comorbidity 184
Assessment 185
Treatment of Depression in Adolescents 186
Prevention of Depression in Adolescents 190
Treatment of Adolescent Depression in Primary Care 191
Summary and Directions for Future Research 192
References 193
Cancer 200
Epidemiology and Related Issues 200
Treatment 201
Symptoms and Long-Term Medical Problems 201
Psychosocial and Behavioral Challenges of Adolescents with Cancer 202
General Developmental Challenges 202
Psychological Problems 203
Social and Family Functioning 204
Treatment Adherence and Health Promotion 205
Cognitive/Academic Challenges 206
Sociocultural Considerations 207
Psychosocial Care for Adolescents with Cancer and Their Families 207
Universal Care 208
Targeted Care 209
Clinical Care 211
Methodological Considerations 212
Sampling, Recruitment, and Retention 212
Outcomes and Related Analyses 213
Clinical Research Agenda 213
Communication 214
Developmental Competencies and Tasks 214
Health Promotion 214
End-of-Life Care 215
Summary 215
References 215
Cystic Fibrosis in Adolescents 221
Genetic Factors 221
Clinical Manifestations 222
Early Childhood 222
Childhood and Adolescence 222
Adults 223
Diagnosis 223
Treatment 224
Cost 225
Medical Summary 225
Developmental Aspects and the CF Medical Care Team 225
The Range of Intervention Targets in CF 226
Behavioral Health Interventions for Adolescents with CF 227
Intervention Research: Knowledge, Support, and Coping 227
Intervention Research: Adherence 228
Intervention Research: Emotional Adjustment 229
Future Research 230
Summary 232
References 232
Chronic and End-Stage Renal Disease 235
Epidemiology 235
Prognosis 236
Clinical Manifestations and Treatment Options 236
Common Issues Seen with Adolescents with Chronic Kidney Disease 241
Role of the Behavioral Health Specialist 245
Methodological Considerations if Conducting Research with This Population 248
Research Agenda 249
References 249
Sickle Cell Disease 254
Background 254
Epidemiology 254
Symptoms 254
Medical Treatment 255
Developmental and Disease-Related Considerations 256
Risk Factors 256
Gender 256
Socioeconomic Status 256
Functional Abilities 257
Stigma 257
Resistance Factors 257
Self-Esteem 257
Social Support 257
Family Environment 257
Behavioral Interventions 258
Disease Management 258
Assessment 258
Interventions 258
School Functioning 260
Neurocognitive Effects 260
Academic Achievement and School Attainment 261
School Absences 261
Sociodemographic and Disease-Related Factors 261
Educator Training 262
School Interventions 262
Methodological Considerations and Future Research Directions 263
References 265
Inflammatory Bowel Disease 269
Inflammatory Bowel Disease 269
Epidemiology 269
Disease Course 270
Etiology 270
Symptoms 270
Treatment 271
Treatment Costs and Insurance Issues 272
Common Concerns Among Adolescents with IBD and Their Families 272
Depressive and Anxiety Symptoms 272
Correlates of Depression and Anxiety 272
Social and School Functioning 273
Correlates of Social and School Functioning 273
Health-Related Quality of Life (HRQOL) 273
Correlates of Youth HRQOL 274
Adherence to Treatment Regimen 274
Correlates of Adherence 274
Family Functioning 275
Parental Distress 275
Parent QOL 275
Sibling Adjustment 275
Correlates of Family Functioning 275
Best Practices for Assessment 275
Evidence-Based Treatment 277
Interventions for Depression 278
Interventions to Address Other Psychosocial Concerns 278
Interventions to Promote Adherence 278
Interventions to Improve Parent and Family Functioning 278
General Suggestions for Clinical Care of Adolescents with IBD 278
Methodological Considerations When Conducting Research in Pediatric IBD Populations 279
Obtaining an Adequate Sample Size and Narrowing Population of Focus 279
Choice of Comparison Group 279
Measure Selection 279
Follow-Up Interval 280
Research Agenda 280
References 281
Websites and Resources for Families and Patients 284
Chronic Fatigue Syndrome 285
Description of Chronic Fatigue Syndrome 285
The Controversy 285
Description of the Condition in Adolescents 286
Epidemiology 286
Diagnostic Criteria 286
Symptoms 287
Treatment Regimen for Adolescents and Families 288
Details of a Graded Exercise Training and Activity Scheduling Programme 290
Other Treatment Considerations 291
Other Treatment Options and Frequency of Necessary Medical Attention 291
Common Problems Seen in Adolescents with CFS 292
Stigma 292
Co-Morbidity 292
Social Support 293
Family Conflict 293
Treatment Adherence Issues 293
Cultural Considerations 294
How a Behavioural Health Specialist, Working Within an Integrated Team, Can Most Effectively Target Adolescents with CFS 294
What are the Best Practices for Assessment and Treatment? 294
Methodological Considerations when Conducting Research with This Population 294
Research Agenda 295
References 295
Adolescents Living with HIV/AIDS 296
Epidemiology 296
Symptoms 297
Treatment Regimen for Adolescents 298
Stigma and Disclosure 299
Comorbidity 300
Adherence 301
Cultural Considerations 303
Role of Behavioral Specialist Working with an Integrated Team 303
Psychological and Neuropsychological Assessment 303
What Do We Know About Programs that Work? 304
Sexual Abuse History 305
What Has Worked to Decrease Risk Behaviors? 305
Family-Centered Advance Care Planning 305
Methodological Considerations 306
Research Agenda 306
Conclusion 306
References 306
Health-Related Quality of Life Instruments for Adolescents with Chronic Diseases 310
Introduction 310
Developmental Considerations 311
Generic Quality of Life Measures 314
Disease-Specific HRQOL Measures 314
Endocrinology 314
Diabetes 314
Obesity 315
Pulmonology 316
Cystic Fibrosis 316
Asthma 317
Neurology 318
Headaches 318
Epilepsy 319
Hematology/Oncology 320
Cancer 320
Sickle Cell Disease 321
Immunology 321
Juvenile Rheumatoid Arthritis 321
HIV/AIDS 321
Pain 322
Conclusions 322
References 322
Index 327