H026 Co-designing and developing a pilot wellbeing programme for people living with Huntington’s disease and their families
Year: 2024
Type: conference-paper
Abstract: Background Little is known about ways we can optimise wellbeing to support people living with Huntington’s Disease (HD) and their families. There is an urgent need to accelerate research on wellbeing approaches to empower the HD community to live more meaningfully and purposefully. We are addressing this empirical gap by working alongside the HD community to support holistic ways to transform wellbeing outcomes. Aim: To co-design and pilot a holistic early intervention wellbeing programme to support the HD community from a strengths-based, person-centred approach. Methods We have completed five forums with the HD community, stakeholders and clinicians. We are conducting semi-structured qualitative interviews to understand experiences of wellbeing and potential challenges. This will inform the co-design of a pilot wellbeing programme to be trialled in a community-based wellbeing clinic. We are engaging community stakeholders and consulting with multi-disciplinary teams throughout this process to ensure our approach aligns with community expectations and to maximise opportunities for participation. We are utilising a participatory, Photovoice-type study to qualitatively evaluate the impact of the wellbeing pilot from a lived experience perspective. Results We are working collaboratively with the HD community to understand wellbeing priorities. Emerging themes include supporting independence, managing anticipatory grief and promoting positive connections with family. Discussion We anticipate this study will offer lived experience insights on diverse approaches to wellbeing and complement existing clinical services by supporting the whole person. The study will contribute to the emerging literature on novel methods to foster productive research partnerships with the HD community.
Authors: Ji-Shen Loong, Julie C Stout
Institution: Monash University
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402373727