Living with cystic fibrosis: a qualitative study of a life coaching intervention

Karin Bæk Knudsen, Kirsten Arntz Boisen, Terese Lea Katzenstein, Laust Hvas Mortensen, Tacjana Pressler, Marianne Skov, Mary Jarden

    Research output: Contribution to journalJournal articleResearchpeer-review

    Abstract

    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
    Original languageEnglish
    JournalPatient Preference and Adherence
    Volume2018
    Pages (from-to)585-594
    Number of pages10
    ISSN1177-889X
    DOIs
    Publication statusPublished - 19 Apr 2018

    Keywords

    • Adherence
    • Chronic diseases
    • Dialogue
    • Phenomenological-hermeneutic methods
    • Self-determination theory
    • Young adults
    • disease, health science and nursing

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