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

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.