Development and evaluation of a multi-family psychoeducational program for cystic fibrosis

Abstract

The development, implementation and evaluation of a psychoeducational program for families with a child affected by cystic fibrosis (CF) is described. Aim of the program was to strengthen the families’ coping with CF-related problems and to improve adherence with chest physiotherapy. Sixteen families from an outpatient CF-clinic participated. Parents and children were educated both individually as well as together in multi-family groups. Teaching, practicing and group discussions were balanced in each session. In a pre–post-design the following variables were evaluated: parental coping, parental health beliefs, children’s coping, adherence, and knowledge about CF. The parental coping patterns and health beliefs remained unchanged in the study group. Children developed more search for social support, whereas their competence and optimism decreased and withdrawal increased slightly as perceived by the parents. There is a subgroup with poor family functioning and adherence at pretest which improves after the intervention. Family-centered psychoeducational intervention may be a promising supportive strategy for children with CF, especially if it is dedicated to families with poor adaptation to the disease.