TRIAL OF FAMILY INTERVENTIONS FOR CYSTIC FIBROSIS

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DESCRIPTION: More than two decades of research have documented the risks associated with chronic illness for both adolescents and their families, including high rates of noncompliance with medical treatment and an increased incidence of behavioral and emotional distress. Despite this evidence and the importance of these problems for long-term health outcomes, the development and evaluation of family interventions for adolescents who have a chronic illness are extremely rare. A major reason for the lack of intervention research is the global level at which key constructs, such as stress and coping, have been measured. The principal investigator's program of research over the past four years has focused on the development of situation-specific measures for adolescents with cystic fibrosis (CF) and their parents that can be used to target issues for intervention and evaluate subsequent change. The central goal of this project is to compare the effects of two empirically validated interventions, Family Education (FE)and Behavioral-Family Systems Therapy (BFST), to standard medical care. BFST has shown promise in reducing conflict and increasing communication skills in families of adolescents with a variety of disorders, including diabetes, anorexia, and attention-deficit disorder. The proposed study would be the first evaluation of structured interventions for adolescents with CF and their parents. CF is the most common, fatal genetic disease of Caucasian populations, primarily affecting the lungs and pancreas. It requires a complex, time-consuming daily medical regimen (chest physiotherapy, alterations in diet) that places great demands on adolescents and their parents. The proposed study is a multi-site, randomized controlled trial these interventions on: 1) adherence to medical treatment, 2) family conflict, communication, and skills, and 3) long-term health outcomes (pulmonary functioning, morbidity). These outcomes will be measured using physiological (wrist actigraphs, inhaler meters), observational (videotaped family diaries, role-play assessments of coping skills), and self-report (reports of adolescents and their parents at two major CF centers will be groups. It is hypothesized that, relative to the other groups, families in the BFST group will show more positive effects on these outcome measures.