Patient Preference and Adherence (Feb 2017)
Flying the nest: a challenge for young adults with cystic fibrosis and their parents
Abstract
Vibeke Bregnballe,1 Kirsten A Boisen,2 Peter Oluf Schiøtz,3 Tacjana Pressler,4 Kirsten Lomborg1,5 1Department of Clinical Medicine, Aarhus University, Aarhus, 2Center of Adolescent Medicine, Department of Pediatric and Adolescent Medicine, Rigshospitalet, University Hospital of Copenhagen, Copenhagen, 3Department of Pediatrics, Aarhus University Hospital, Aarhus, 4Cystic Fibrosis Centre, Rigshospitalet, University Hospital of Copenhagen, Copenhagen, 5Department of Public Health, Aarhus University, Aarhus, Denmark Objectives: As young patients with cystic fibrosis (CF) grow up, they are expected to take increasing responsibility for the treatment and care of their disease. The aim of this study was to explore the disease-related challenges faced by young adults with CF and their parents, when they leave home.Materials and methods: A questionnaire survey of Danish patients with CF aged 18–25 years and their parents was conducted. The questionnaires were based on focus-group interviews with young adults with CF and their parents, and addressed challenges faced in the transition phase between childhood and adulthood, including different areas of disease management in everyday life.Results: Among all of the patients invited, 62% (n=58/94) of young adults and 53% (n=99/188) of their parents participated in the study. In total, 40% of the 18- to 25-year-olds were living with their parents, and the parents continued to play an active role in the daily care of their offspring’s disease. Among the young adults who had left home, both the patients and their parents reported many difficulties regarding disease management; the young adults reported difficulties in contacting social services and in affording and preparing sufficient CF-focused meals, and their parents reported difficulties in answering questions concerning social rights and CF in general, and in knowing how to give their offspring the best help, how much to interfere, and how to relinquish control of managing their offspring’s disease. Conclusion: Young adults with CF who have left home have difficulties in handling the disease and their parents have difficulties in knowing how to give them the best help. There is an urgent need for holistic CF transitional care, including ensuring that young adults master the essential skills for self-management as they leave their parents. Keywords: chronic disease, self-management, parental support, transition
