Self Determination and Health Behaviors in Children with Cystic Fibrosis

Purpose: We interviewed pediatric patients with cystic fibrosis (CF) to plan an intervention that would support adherence to respiratory therapies while also promoting self-determination. Interviews were structured so as to assess our hypothesis that patients experience less self-determination in the context of their health care compared to other activities. Methods: We conducted a qualitative interview study to characterize CF patients' sense of competence, autonomy, and relatedness in the areas of health care behaviors, recreational activities, and other activities of daily life. Interviews were performed with seventeen, 8 to 16 year old children and adolescents with CF. Results: Although subjects described similar levels of competency in the practice of healthcare activities compared to other daily activities, most reported relatively lower levels of autonomy and relatedness when discussing respiratory therapies compared to other daily activities. Conclusion: Failure to meet patients' needs for autonomy and relatedness may represent potential barriers to treatment adherence in these adolescent and pre-adolescent subjects with CF. Our CF patients relate to recreational activities as supporting their competence and relatedness.