The experience of men and women with cystic fibrosis who have become a parent: A qualitative study

Abstract

Aims and objectives: To explore the experiences of men and women with cystic fibrosis in becoming parents.

Background: As lifespan for people with cystic fibrosis increases, and reproductive technology advances, having a child of their own becomes a possibility.

Design: This study used a phenomenological framework.

Methods: Seven Australian adults with cystic fibrosis were invited to describe their experiences of becoming parents in the context of a semi-structured interview. Analysis of the data involved highlighting recurrent phrases and isolating emergent themes.

Results: Two overarching themes characterised the participants' experience: Counting the cost, as they recalled Concentric communication and Pathways to pregnancy; and Living the dream, as they cast a retrospective view over this, their major achievement, in the light of their Reaction: a dream comes true, Coping: a question of balance, Conjecture: the future redefined and Confidence: recalibrating.

Conclusions: While advances in cystic fibrosis care and reproductive technology have increased the possibility of individuals with cystic fibrosis becoming parents, the passage to becoming a parent is a complex process.

Relevance to clinical practice: These findings can inform health professionals to support the adaptive work necessary for families that include members with cystic fibrosis. A contemporary understanding of this phenomenon is necessary for facilitating clinically relevant communication.

Keywords: chronic illness; cystic fibrosis; family caregivers; fathers; healthcare professionals; life-shortening illness; mothers; parenting; pregnancy; qualitative research.