H044 Keeping yourself in mind: successfully piloting new programmes of psychological support for individuals and caregivers affected by Huntington’s disease
Year: 2024
Type: conference-abstract
Abstract: Background Psychological difficulties are well-documented among both gene-positive and gene-negative members of Huntington’s disease (HD) families. Low mood, anxiety and poor quality of life are common. However, existing psychological therapies are ill-adapted for, and inadequately effective in, the unique context of HD. Aims We developed three online Acceptance and Commitment Therapy group psychological interventions for i) gene-positive premanifest individuals, ii) caregivers of adults with HD, and iii) caregivers of people with juvenile-onset HD. We aimed to address the lack of tailored interventions for psychological wellbeing in HD families. We evaluated acceptability, feasibility, and pre-post psychological wellbeing. Methods We recorded participants’ attendance, completion rates, acceptability ratings, and pre-post change in depression, anxiety, psychological flexibility, and quality of life measures. Qualitatively, we captured free-text feedback on experiences of attending. Follow-up interviews with qualitative analysis were conducted, reported separately. Results Feasibility and acceptability were conclusively demonstrated, with 25/28 (89%) of participants completing their course and session attendance at 90%. The programmes were highly acceptable, with 100% recommending them for others, 100% positively rating intervention quality, 100% positive regarding the online format, 100% feeling more connected, and 80% feeling more equipped to cope with HD. Regarding psychological outcomes across interventions, participants demonstrated mean improvements in depression (31.3-52.9%), anxiety (27.5-54.3%), psychological flexibility (15.1-24.9%), values-related progress (8.2-44.9%), obstruction (26.5-53.1%) and quality of life (6.7-52.3%). Conclusions These new interventions offer tailored psychological support for groups affected by HD. Our initial findings demonstrate high acceptability, excellent feasibility, and crucial improvements in wellbeing which recommend wider evaluation and implementation.
Authors: Sarah Gunn, Helen Santini, Poppy Hill, Lindsey Hughes, Ruth Sands, Paige Lindo, Suzanne Buswell
Institutions: University of Leicester, Huntington's Disease Association
Language: English
Subfield: Clinical Psychology
Field: Psychology
Domain: Social Sciences
Open Access status: gold
OpenAlex ID: W4402374322