Funding outcome

Caregivers play an important role in providing the needed care and management for improving health outcomes and quality of life for individuals with rare diseases, including genetic obesity conditions (GOC) such as Prader-Willi syndrome (PWS) and Bardet Biedl syndrome (BBS). Providing care for GOC patients, who often have specialized needs, has been associated with increased physical, social, emotional, and financial strains on caregivers. Therefore, this intervention study aims to improve caregiver knowledge, self-efficacy, and social support to improve their overall health, quality of life and care for GOC patients. We will do this by first engaging with caregivers to assess their specific resource, training and social support needs. We will use a variety of approaches including surveys, interviews, and focus group discussions. We will use our findings to develop the web-based intervention programs that are best suited to these caregivers. These may include regular, needs-based, 'caregiver-caregiver' and 'caregiver-healthcare professional' interactions for sharing practical experiences that enhance social and professional support. Our web-based programs will be informed by scientific evidence and may also include modular training resources such as online videos, links to evidence-based research and knowledge translation materials, and chatrooms for synchronous and asynchronous learning and engagement of participants for social support. These will enhance learning for new caregivers and provide ongoing support for existing caregivers. They will also increase caregiver self-efficacy for safeguarding their own health and wellbeing while providing informed, safer, and stage-appropriate care to GOCs.