H013 Enhancing care for families coping with huntington’s disease: a case study on the impact of supports provided by a community-led organisation beyond the hospital system
Year: 2024
Type: conference-abstract
Abstract: Background Huntington’s disease (HD) poses multifaceted challenges for individuals and their loved ones, necessitating comprehensive support systems beyond clinical care. Community-led support organisations such as Huntington’s Victoria offer invaluable emotional, practical, and informational support to families navigating the complexities of being diagnosed or to care for a family member with Huntington’s disease. We aim to advocate for healthcare professionals to collaborate with local support organisations, we present a comprehensive analysis of our engagement with affected families. Case History Our study documents the experiences of consenting families and family members from the Huntington’s Disease community in Victoria, Australia, who sought assistance from Huntington’s Victoria. Overwhelmed by either the initial diagnosis or the rapid disease’s progression, they felt empowered through local community support. To be one of the organisations fostering community engagements, we witnessed profound transformations in families’ coping mechanisms and overall well-being. Client Testimonials Client testimonials will be added on the posters, these are excerpts from client interviews conducted during our May Awareness campaign. A range of client testimonials from the broader Huntington’s community will be used and referred to on the poster. Conclusion Our case study underscores the indispensable role of support groups in providing holistic care for individuals and families living with Huntington’s Disease. By fostering community, empowerment, and resilience, support groups complement medical interventions, enhancing overall quality of life. This experience-based study advocates for a paradigm shift towards holistic, community-integrated care for these families living with Huntington’s Disease.
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402374593