‘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...
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| 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
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| Series: | Health Psychology and Behavioral Medicine |
| Subjects: | |
| Online Access: | https://www.tandfonline.com/doi/10.1080/21642850.2025.2467432 |
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