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The experience of men and women with cystic fibrosis who have become a parent: A qualitative study
Jessup, Melanie Li, Anne Fulbrook, Paul Bell, Scott C.
Jessup, Melanie
Li, Anne
Fulbrook, Paul
Bell, Scott C.
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, lifeshortening
illness, mothers, parenting, pregnancy, qualitative research
Date
2018
Type
Journal article
Journal
Journal of Clinical Nursing
Book
Volume
27
Issue
44050
Page Range
1702-1712
Article Number
ACU Department
School of Nursing, Midwifery and Paramedicine
Faculty of Health Sciences
Faculty of Health Sciences
Relation URI
Source URL
Event URL
Open Access Status
License
File Access
Controlled