‘In the dark’: parents’ lifelong commitment to supporting children with Bardet-Biedl syndrome

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...

Full description

Saved in:
Bibliographic Details
Main Authors: Jeanette Ullmann Miller, Lena Fauske, Solrun Sigurdardottir, Shahrzad Arfa, Charlotte von der Lippe
Format: Article
Language:English
Published: Taylor & Francis Group 2025-12-01
Series:Health Psychology and Behavioral Medicine
Subjects:
Online Access:https://www.tandfonline.com/doi/10.1080/21642850.2025.2467432
Tags: Add Tag
No Tags, Be the first to tag this record!