Chronic Illness in Children and Adolescents
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 of 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, the Journal of Community Psychology, and the Journal of Primary Prevention, and serves on the Board of Directors of many
Chronic Illness in Children and Adolescents
3 Diagnosis and Treatment Indications (p. 37-38)
As mentioned earlier, a best-practice approach when assessing children's psychosocial adjustment and adaptation to chronic illness includes a multivariate approach to assessment that includes child and caregiver interviews, direct observations of behavior, and subjective and objective rating scales, each of which are gathered in multiple settings. It is noteworthy, however, that few assessment instruments have been systematically normed for children and adolescents with a chronic illness. While the majority of the behavior and emotional measures typically employed in the pediatric illness literature have sound reliability, validity, and standardized norms, the standardization samples for these instruments have primarily been based on child psychopathology rather than chronic illness. Further, the theoretical framework that has guided the development of these instruments has been based almost exclusively on a model of psychopathology. Therefore, when interpreting data from these instruments in clinical practice, there are inherent challenges given the common overlap between many medical and psychiatric symptoms as well as iatrogenic treatment effects for medical problems.
A child with cancer being treated with chemotherapy may experience a lack of energy and sleep disturbances. Although these are two primary symptoms of depression, they also are adverse effects associated with chemotherapy or radiation therapy (the most common treatments for cancer), and should not be confused with a depressive disorder. Nonetheless, scores for a child with these symptoms on a rating scale that is primarily symptom-driven may indicate clinically significant problems with depression. Therefore, the astute practitioner, through examination of all available evidence, must determine whether the presenting symptoms are secondary to the chronic illness or whether they actually represent a psychiatric disorder or perhaps a cluster of symptoms that may eventually result in a psychiatric disorder. Overall, no specific assessment battery exists for children with chronic illness. Brief descriptions of the various methods used to assess behavioral, cognitive, and affective functioning of youth with a chronic illness are presented in the following sections. In addition, measures that assess adherence, stress and coping, quality of life, and family variables are reviewed.
3.1 Caregiver and Child Interviews
Caregiver and child interviews often represent the initial step when evaluating adjustment, adaptation, coping, and quality of life in youth with a chronic ill ness. Important information gathered from these interviews will likely include historical and current information that aids in conceptualizing the presenting problem. Current information gathered from the interview can include the child's age, gender, and family socioeconomic status. Because family functioning represents an important component of the transactional stress and coping model as well as the disability stress coping model, caregiver interviews provide important information about family relationships and the level of family support, all of which may predict adaptation to the chronic illness. Open-ended questions about family strengths and weakness elicit valuable information about how well the family functions as a unit, the family resources they may possess, and how they cope and adapt with those stressors associated with their child's chronic illness.