Exploring the lived experiences of parents living with cystic fibrosis

A qualitative study

Bibliographic Data

ID5051219
AuthorsAnne Jacob (0000-0002-2644-6479, Université Paris Cité), Deschamps Hubert (0000-0001-6044-4568, Hopital Cochin, Assistance Publique des Hôpitaux de Paris, France), Cléa Brain (Université Paris Cité), Dominique Grenet (Hôpital Foch), Cécile Flahault (0000-0001-7930-205X, Université Paris Cité)
Year2025
Volume30
Issue9
Pages2183-2200
Publication date2025-08-01
Open AccessYes
TypeARTICLE
VenueJournal of Health Psychology (JOURNAL)
Journal identifiersISSN: 1359-1053 • E-ISSN: 1461-7277
PublisherSAGE Publications Inc (PUBLISHER)
DOI10.1177/13591053241307874
PMID39764735
OpenAlexW4406151167
LanguageEN
References cited22

Because of the lengthening of their life-expectancy, more people with cystic fibrosis (CF) now pursue parenthood. To explore the experience of parenting while having CF, 18 French parents with CF were interviewed (including 12 mothers and 9 participants with a lung transplant). A thematic analysis of the interview transcripts was conducted. Within the domain of parenthood, seven themes were found: Journey to Parenthood; Experience of Parenthood; Daily Life; Administrative and Financial Aspects; Interaction of CF with Children's Lives; The Spouse; The Children. This paper documents the positive aspects of parenthood, and the logistical and emotional challenges faced by participants and how they adjust to them. Notably, this paper highlights the struggle of most participants to become parents, the sensitive period of lung transplant surgery for the family, what children are told about CF, and how children's lives are coloured by a sense of normality and worries for their sick parent

Cystic fibrosis · Developmental psychology · Lived experience · Psychotherapist · Qualitative research · Sociology · Child Nutrition and Feeding Issues · Cystic Fibrosis Research Advances · Family and Disability Support Research · Medicine · Psychology · Social Psychology

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