H044 Keeping yourself in mind: successfully piloting new programmes of psychological support for individuals and caregivers affected by Huntington’s disease

<h3>Background</h3> 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. <h3>Aims</h3> 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. <h3>Methods</h3> 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. <h3>Results</h3> 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%). <h3>Conclusions</h3> 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.

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Published
2024-09-01
DOI
https://doi.org/10.1136/jnnp-2024-ehdn.274
Citations
1
Primary Topic
Genetic Neurodegenerative Diseases
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article
Field-Weighted Citation Impact
0.27
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article

H044 Keeping yourself in mind: successfully piloting new programmes of psychological support for individuals and caregivers affected by Huntington’s disease

Ruth Sands, Lindsey Hughes, Sarah Gunn, Poppy Hill et al.
1 citations
Genetic Neurodegenerative Diseases
0.27
article

H044 Keeping yourself in mind: successfully piloting new programmes of psychological support for individuals and caregivers affected by Huntington’s disease

Ruth Sands, Lindsey Hughes, Sarah Gunn, Poppy Hill, Helen Santini, Paige Lindo, Suzanne Buswell
article en
1 citations

Abstract

<h3>Background</h3> 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. <h3>Aims</h3> 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. <h3>Methods</h3> 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. <h3>Results</h3> 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%). <h3>Conclusions</h3> 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.

University of Leicester (GB), Huntington's Disease Association (GB)
Gender equality
Openalex Percentile: Top 45%
Genetic Neurodegenerative Diseases
0.27
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