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Self-Management of Cystic Fibrosis: Short-Term Outcomes of the Cystic Fibrosis Family Education Program

Center for Health Promotion Research and Development, University of Texas Health Science Center at Houston

Danita I. Czyzewski, PhD

Baylor College of Medicine, Houston, Texas

Guy S. Parcel, PhD

Center for Health Promotion Research and Development, University of Texas Health Science Center at Houston

Paul R. Swank, PhD

Department of Educational Psychology, University of Houston, Texas

Marianna M. Sockrider, MD, DrPH

Texas Children's Hospital, Houston, Texas

Marco J. Mariotto, PhD

Department of Psychology, University of Houston, Texas

Daniel V. Schidlow, MD

Department of Pediatrics, MCP Hahnemann School of Medicine, Allegheny University of the Health Sciences, Clinical Affairs, and Cystic Fibrosis Center at St. Christopher's Hospital for Children, Philadelphia, Pennsylvania

Robert J. Fink, MD

Allergy, Immunology and Pulmonary Medicine Department of Children's National Medical Center, Washington, DC

Dan K. Seilheimer, MD, FAAP

Pulmonary Services, Respiratory Care Department, and Children's Asthma Center at Baylor College of Medicine, Houston, Texas

This study tested the efficacy of the Cystic Fibrosis Family Education Program, a cystic fibrosis self-management program, on improving participants' knowledge, self-efficacy, self-management behavior, health, and quality of life. A quasi-experimental pretest-posttest nonequivalent comparison group design was employed. Participants made up 104 patient-primary caregiver dyads from the intervention site cystic fibrosis center and 95 from the usual care comparison center. The intervention, a self-paced print curriculum based on social cognitive theory, targeted behavioral capability, self-efficacy, and outcome expectations and was implemented as an integral part of medical care. Parents, early childhood, middle childhood, and adolescents received separate materials on respiratory, nutrition and malabsorption, communication, and coping issues. Significant intervention effects were found on the knowledge scores for caregivers, adolescents, and children; caregiver and adolescent total self-management scores; Child Behavior Checklist total score; one parent coping scale score; the modified NIH score; NIH pulmonary factor 1; and the Brasfield total score. Significant interaction effects were evident in the self-efficacy scores for caregivers and children.

Health Education & Behavior, Vol. 24, No. 5, 652-666 (1997)
DOI: 10.1177/109019819702400511


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