'In the dark': parents' lifelong commitment to supporting children with Bardet-Biedl syndrome.

ABSTRACT:

Background

Bardet-Biedl syndrome (BBS) is a rare disorder involving a complex combination of eye and kidney diseases, obesity and learning difficulties. To better understand the roles of family caregivers, this study sought to explore parents' experiences of supporting adult children with BBS.

Method

This study included 17 parents of adult children with BBS. Semi-structured interviews were used as the research method. The generated data were interpreted using a reflexive thematic analysis, which employed a phenomenological and hermeneutical approach.

Result

Four themes were identified - namely, worries and expectations for the child's future, advocate and companion, in the power of the health and support system, and sources of support and coping. The findings indicate

SUBMITTER: Ullmann Miller J 

PROVIDER: S-EPMC11834772 | biostudies-literature | 2025

REPOSITORIES: biostudies-literature