Chronic Illness in Children and Adolescents

By
Ronald T. Brown, PhD
Brian P. Daly, PhD
Annette U. Rickel, PhD

Course Outline

Management of chronic illness in children and adolescents often is a multifaceted challenge that requires the attention and expertise of individuals from a variety of disciplines that include psychology, psychiatry, social work, and medicine. This book provides readers with a practical overview of the definitions, characteristics, theories and models, diagnostic and treatment indications, and relevant aspects and methods of evidence-based psychosocial treatments. Although treatments and research for chronic conditions in general are reviewed, particular attention is directed at asthma, cancer, cystic fibrosis, diabetes mellitus, and sickle cell disease due to the high incidence of these conditions. Case vignettes and suggestions for further reading are provided.

About the Authors

Ronald T. Brown, PhD, ABPP is Professor of Public Health, Psychology and Pediatrics and is Dean of the College of Health Professions at Temple University. Dr. Brown is a diplomate in Clinical Health Psychology of the American Board of Professional Psychology, and is a fellow of the American Psychological Association, the American Psychological Society, the Society of Behavioral Medicine, and the National Academy of neuropsychology. Dr. Brown has been the recipient of numerous grant awards from the National Institutes of Health, the Centers for Disease Control and Prevention, the Department of Defense and the Office of Special Education and Rehabilitation Services. Dr. Brown currently is the Editor of the Journal of Pediatric Psychology and serves on the Behavioral Medicine and Intervention Outcomes of the Center for Scientific Review of the National Institutes of Health. He has published over 200 articles, chapters, and books related to childhood psychopathology and health psychology. He also has served on the editorial boards of 11 journals related to child and adolescent psychopathology. Dr. Brown also serves as a liaison to the American Academy of Pediatric subcommittee on the assessment and practice guidelines for attention-deficit/hyperactivity disorder. Dr. Brown also serves as Chair of the Board of Scientific Affairs of the American Psychological Association.

Brian P. Daly, PhD, is Assistant Professor in the Department of Public Health at Temple University. Dr. Daly is an Instructor in Health Psychology, Director of the Temple Children’s Hospital pediatric psychology clinic, and practices clinically in the Department of Pediatrics, where he often consults and provides therapeutic interventions to children with chronic illnesses. Dr. Daly recently received a research award from the Pew Foundation to investigate prevention efforts with children at risk for behavioral problems. Dr. Daly’s research interests include interventions for children and adolescents with chronic illnesses, sleep hygiene behaviors for children, school mental health services, and resiliency factors among urban children and adolescents of color.

Annette U. Rickel, PhD, is a Professor of Psychology at Cornell University Medical College in New York City and is in a clinical practice. She received her Doctorate from the University of Michigan, and is a fellow and past President of the American Psychological Association’s Society for Community Research and Action, and was a fellow of the American Council on Education. Dr. Rickel was a Senior Congressional Science Fellow in the U.S. Senate from 1992-1994, and served on President Clinton’s Task Force for National Health Care Reform. Dr. Rickel has received several research awards from institutions such as the National Institute of Mental Health, as well as the MacArthur and Kellogg Foundations. She has been a Consulting Editor for the American Journal of Community Psychology, and the Journal of Primary Prevention, and serves on the Board of Directors of many non-profit organizations. Dr. Rickel has authored or coauthored seven books, numerous research articles, and chapters that deal with early intervention programs for individuals at high risk for psychopathology.

Learning Objectives

After completing this course you’ll be able to:

1. Define chronic.
2. Discuss the percentage of children in the U.S. who have a chronic health condition.
3. State the life expectancy of children with chronic illness according to van Dyck et al., 2004.
4. State the chronic disease that causes more school absences than any other chronic disease.
5. Describe cystic fibrosis.
6. List complications of uncontrolled diabetes.
7. State the cause of death in children at various ages from sickle cell disease.
8. Describe how medical and psychological diagnosis are made.
9. State possible associated comorbid psychiatric conditions for children and adolescents with asthma, cancer and diabetes mellitus.
10. Compare the transactional stress and coping model (TSC) and the disability stress-coping model (DSC).
11. Discuss the data regarding severity of anxiety with severe and mild or moderate asthma.
12. Discuss family functioning as a social-ecological factor.
13. Describe behavior rating scales and list the commonly used ones for children and adolescents.
14. Describe the Personal Adjustment and Roles Skill Scale.
15. Discuss the four steps associated with the systemic desensitization process.
16. Describe the empirical approach of CBT.
17. List and describe several behavioral therapies.
18. Discuss the roles of mental health practitioners in treatment and management of children with asthma.
19. Discuss assertiveness training for children with cancer.
20. Discuss pain management for a child or adolescent with cancer.
21. Describe the symptoms of sickle cell disease and interventions used for coping.
22. Discuss effective management for asthma.
23. Compare adherence of young children and adolescents who have diabetes mellitus.
24. Describe multi-systemic family therapy (MST), behavioral family systems therapy (BFST), and structural family therapy (SFT).
25. Discuss the value of group therapy.
26. Describe the STARBRIGHT program.
27. List common individual barriers to medical treatment recommendations.

Course Contents

1. Description
1.1 Terminology
1.2 Definition
1.3 Epidemiology
1.3.1 Incidence and Prevalence
1.4 Course and Prognosis
1.4.1 Asthma
1.4.2 Cancer
1.4.3 Cystic Fibrosis
1.4.4 Diabetes Mellitus
1.4.5 Sickle Cell Disease
1.5 Differential Diagnosis
1.6 Comorbidities
1.6.1 Asthma
1.6.2 Cancer
1.6.3 Cystic Fibrosis
1.6.4 Diabetes Mellitus
1.6.5 Sickle Cell Disease
1.7 Diagnostic Procedures and Documentation
2. Theories and Models of the Disorder
2.1 Risk Factors
2.1.1 Disease and Disability Parameters
2.1.2 Genetic Disorders
2.1.3 Intrauterine Growth Retardation, Prematurity, and Low Birth Weight
2.1.4 Teratogens
2.1.5 Disease Severity
2.1.6 Functional Independence
2.1.7 Psychosocial Stressors
2.2 Resistance Factors
2.2.1 Intrapersonal Factors
2.3 Social-Ecological Factors
2.3.1 Family Functioning
2.3.2 Financial Resources
2.3.3 Stress Processing
2.4 Applying the Models to Sickle Cell Disease
3. Diagnosis and Treatment Indications
3.1 Caregiver and Child Interviews
3.2 Behavior
3.3 Cognition
3.4 Affect
3.5 Adherence
3.6 Stress and Coping
3.7 Quality of Life
3.8 Family Variables
3.9 Summary
4. Treatment
4.1 Methods of Treatment
4.1.1 Behavior Therapy
4.1.2 Cognitive-Behavior Therapy
4.1.3 Behavioral and Cognitive-Behavioral Interventions— Empirical Support and Clinical Trials
4.1.4 Psychological Adjustment
4.1.5 Psychosocial Factors, Coping and Pain Management
4.1.6 Adherence
4.1.7 Family Systems Interventions
4.1.8 Parent Training
4.1.9 Group Therapy
4.1.10 Peer Group Interventions
4.1.11 Peer Support Groups
4.1.12 Electronic Peer Support Groups
4.1.13 Self-Regulatory Skill Training, Self-Management, and Psychoeducational Strategies
4.2 Mechanisms of Action
4.3 Efficacy and Prognosis
4.4 Variations and Combinations of Methods
4.5 Problems in Carrying Out the Treatment
4.5.1 Individual Barriers
4.5.2 Family Barriers
4.5.3 Provider Barriers
4.5.4 System and Setting-Based Barriers
4.6 Multicultural Issues
4.7 Summary
5 Case Vignette
6 Further Reading
7 References

Feedback

“Pulls together essential information on evidence-based psychosocial management and symptom control for the most common chronic illnesses of childhood.” — Gerald P. Koocher, PhD, Dean and Professor, School for Health Studies, Simmons College, Boston; 2006 President, American Psychological Association

“An absolutely outstanding book… One of the major strengths […] is its integration of key assessment and management issues across a variety of chronic illnesses […], rather than a disease-specific approach that could mask many of the similarities across conditions. Attention to multicultural issues is another strength that also distinguishes this volume from others in the field. Overall, this book is likely to be an indispensable resource for today’s child health professionals.” — Annette M. La Greca, PhD, Professor of Psychology and Pediatrics, University of Miami

“The book is an excellent, user-friendly resource for practitioners and their trainees.” — Dennis Drotar, PhD, Professor, Division of Behavioral Medicine and Clinical Psychology,

“This succinct volume concisely conveys the multifaceted considerations in psychosocial and medical issues associated with pediatric chronic illnesses. All of the critical issues are touched upon by integrating the scientific literature with applications to clinical practice.” — Michael C. Roberts, PhD, Professor and Director, Clinical Child Psychology Program, University of Kansas

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