Patient Preference and Adherence (Apr 2018)
Living with cystic fibrosis – a qualitative study of a life coaching intervention
Abstract
Karin Bæk Knudsen,1 Kirsten Arntz Boisen,2 Terese Lea Katzenstein,1,3 Laust Hvas Mortensen,4 Tacjana Pressler,5 Marianne Skov,5 Mary Jarden1,4 1Department of Infectious Diseases, Copenhagen University Hospital, Copenhagen, Denmark; 2Department of Pediatric and Adolescent Medicine, Center of Adolescent Medicine, Copenhagen University Hospital, Copenhagen, Denmark; 3Department of Clinical Medicine, Faculty of Medical Sciences, University of Copenhagen, Copenhagen, Denmark; 4Department of Public Health, University of Copenhagen, Copenhagen, Denmark; 5Department of Pediatric and Adolescent Medicine, Cystic Fibrosis Center Copenhagen, Copenhagen University Hospital, Copenhagen, Denmark Background: Cystic fibrosis (CF) is a chronic, life-shortening disease with a significant treatment burden. To support young adults with CF in their everyday life, we previously conducted a life coaching feasibility trial (published elsewhere). The aim of the current study was to explore how life coaching was experienced by study participants within the context of their lives with CF.Methods: A qualitative study using individual interviews. Respondents (n=14) were recruited from the intervention group after participation in life coaching. Data were analyzed from a phenomenologic-hermeneutical perspective, inspired by Ricoeur’s theory.Findings: Periodic exacerbations of CF led to worry about disease progression, and interrupted the respondents’ ability to fulfill daily life roles satisfactory. The treatment burden demanded self-discipline and this was sometimes at the expense of social life or career. The young adults rarely spoke to others about their situation; therefore, they valued opening up to a professional coach about life and concerns. We identified three themes: 1) living an unpredictable life; 2) the conflict between freedom and the constraints of illness; and 3) the value of telling one’s story. In relation to all three themes, coaching promoted reflection over life situations, reframed thoughts, and facilitated finding new ways to manage everyday life.Conclusion: Life coaching is an intervention that is valued for those who feel challenged by their CF disease. Coaching programs should be designed to include the participants, when they feel a need for coaching and are open for change. Screening parameters to identify persons who will most likely benefit from life coaching are needed. Keywords: phenomenological-hermeneutic methods, adherence, self-determination theory, dialogue, young adults, chronic diseases
