The roles and experiences of adolescents with cystic fibrosis and their parents during transition: A qualitative interview study

Karsten Vanden Wyngaert; Sara Debulpaep; Wim Van Biesen; Sabine Van Daele; Sue Braun; Kenneth Chambaere; Kim Beernaert

doi:10.1016/j.jcf.2023.10.005

The roles and experiences of adolescents with cystic fibrosis and their parents during transition: A qualitative interview study

J Cyst Fibros. 2023 Oct 13:S1569-1993(23)00925-6. doi: 10.1016/j.jcf.2023.10.005. Online ahead of print.

Authors

Karsten Vanden Wyngaert¹, Sara Debulpaep², Wim Van Biesen³, Sabine Van Daele², Sue Braun⁴, Kenneth Chambaere⁵, Kim Beernaert⁵

Affiliations

¹ Pediatric Department, Ghent University Hospital, Corneel-Heymanslaan 10, Ghent 9000, Belgium. Electronic address: Karsten.vandenwyngaert@uzgent.be.
² Pediatric Department, Ghent University Hospital, Corneel-Heymanslaan 10, Ghent 9000, Belgium.
³ Department of Internal Medicine, Renal Division, Ghent University Hospital, Corneel-Heymanslaan 10, Ghent, Belgium.
⁴ Department of Psychology, Universitair Ziekenhuis Brussel (UZ Brussel, Laarbeeklaan 101, Brussels 1090, Belgium; Department of Pediatrics, Pediatric Pulmonology, Cystic Fibrosis Clinic and Pediatric Infectious Diseases, Universitair Ziekenhuis Brussel (UZ Brussel), Laarbeeklaan 101, Brussels 1090, Belgium.
⁵ Department of Public Health and Primary Care, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium; End-of-life Care Research Group, University Brussels (VUB) and Ghent University, Ghent, Belgium.

PMID: 37839982
DOI: 10.1016/j.jcf.2023.10.005

Abstract

Purpose: Inadequate participation of Adolescents and Young Adults (AYAs) and parents are well-established barriers of transition. Shifts in roles are mandatory with increasing responsibilities for AYAs and decreasing involvement of parents in care. This study explores the shifts in roles of AYAs and their parents and its association with the subjective experience of transition.

Methods: We conducted in-depth semi-structured interviews with AYAs living with Cystic Fibrosis and parents. Participants were recruited through patient organizations via convenience sampling and questioned on which roles they assumed during transition. Three authors performed an interpretative phenomenological analysis, establishing separate code trees for AYAs and parents. Data saturation was achieved.

Results: 18 AYAs (age 21y±2.9) and 14 parents (age 50y±2.0) were included. We identified five common themes: (1) the reciprocal reliance between AYAs and parents, (2) the policies of physicians and hospitals, (3) the AYAs' changing appeal and need for support, (4) the identification of parents as co-patients, and (5) the enforced changes in the roles of parents. AYAs primarily addressed roles related to self-management, while parents discussed family functioning.

Conclusions: This study identified motives underlying the assumption of roles by AYAs and parents. Both AYAs and parents addressed similar themes, highlighting their mutual challenges and needs. In contrast to AYAs, parents' desired roles were undefined and a latent sense of responsibility was identified as an important motive. Healthcare providers should acknowledge parents' challenging position and communicate transparently about changing roles. Additionally, healthcare providers should recognize that imposing restrictive roles may result in parental resistance, but can also foster AYAs' skill development. Future research should examine the short- and long-term impact of role-management interventions in AYAs and their parents.

Keywords: Adolescents and young adults; Cystic fibrosis; Experiences; Healthcare transition; Parents; Qualitative research.