Caring for a child with Bardet-Biedl syndrome: A qualitative study of the parental experiences of daily coping and support

Abstract

This study aimed to explore the parental experiences of having a child with Bardet-Biedl syndrome (BBS) and how parents managed to cope with this situation. Five parents of children with BBS (0-18 years old) participated in semistructured in-depth interviews. Inductive thematic analysis was used to identify themes. The parents experienced distress due to a lack of knowledge on BBS in their support system (e.g., school staff, clinicians, and family members), and they found it stressful to coordinate with multiple support services. Socialization at work, support from family members, and communicating with other parents who are in a similar situation promoted better coping and adaptations to daily life. Results highlight the importance of parents receiving adequate support while they face daily challenges. An increased knowledge on how rare disorders impact family life is needed in the support system.