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Parent and Child Perceptions of a Self-Regulated, Home-Based Exercise Program for Children With Cystic Fibrosis

Happ, Mary Beth; Hoffman, Leslie A.; DiVirgilio, Dana; Higgins, Linda W.; Orenstein, David M.

doi: 10.1097/NNR.0b013e3182a03503

Background: Despite recognized benefits, many children with cystic fibrosis (CF) do not consistently participate in physical activities. There is little empirical literature regarding the feelings and attitudes of children with CF toward exercise programs, parental roles in exercise, or factors influencing exercise experiences during research participation.

Objectives: The aim of this study is to describe the exercise experiences of children with CF and their parents during participation in a 6-month program of self-regulated, home-based exercise.

Methods: This qualitative descriptive study was nested within a randomized controlled trial of a self-regulated, home-based exercise program and used serial semistructured interviews conducted individually at 2 and 6 months with 11 purposively selected children with CF and their parent(s).

Results: Six boys and five girls, ages 10–16 years, and parents(nine mothers, four fathers) participated in a total of 44 interviews. Five major thematic categories describing child and parent perceptions and experience of the bicycle exercise program were identified in the transcripts: (a) motivators, (b) barriers, (c) effort/work, (d) exercise routine, and (e) sustaining exercise. Research participation, parent–family participation, health benefits, and the child’s personality traits were the primary motivators. Competing activities, priorities, and responsibilities were the major barriers in implementing the exercise program as prescribed. Motivation waned, and the novelty wore off for several (approximately half) parent–child dyads, who planned to decrease or stop the exercise program after the study ended.

Discussion: We identified motivators and barriers to a self-regulated, home-based exercise program for children with CF that can be addressed in planning future exercise interventions to maximize the health benefits for children with CF and the feasibility and acceptability to the children and their families.

Mary Beth Happ, PhD, RN, FAAN, is Professor, College of Nursing, Ohio State University, and Adjunct Professor, School of Nursing, University of Pittsburgh.

Leslie A. Hoffman, PhD, RN, is Professor Emeritus, Nursing and Clinical Department, University of Pittsburgh.

Dana DiVirgilio, MPH, is Research Associate, School of Nursing, University of Pittsburgh.

Linda W. Higgins, PhD, RN, is Adjunct Assistant Professor, School of Nursing and Department of Pediatrics, University of Pittsburgh; and Improvement Specialist, Donald D. Wolff Jr. Center for Quality, Safety, and Innovation, University of Pittsburgh Medical Center (UPMC).

David M. Orenstein, MD, is Professor, Department of Pediatrics, Children’s Hospital of Pittsburgh of UPMC, School of Medicine, and Department of Health and Physical Activity, School of Education, University of Pittsburgh.

Accepted for publication May 22, 2013.

The authors acknowledge Dr. Janet Stewart, Professor and Dean Faculty of the Health Sciences Kibogora Polytechnic, Rwanda, and National Institute of Nursing Research, R01NR9285 (Orenstein).

The authors have no funding or conflicts of interest to disclose.

Corresponding author: Mary Beth Happ, PhD, RN, FAAN, Center of Excellence in Critical and Complex Care, College of Nursing, The Ohio State University, 378 Newton Hall, 1585 Neil Avenue, Columbus, OH 43210 (e-mail:

© 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins.