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The psychosocial sequelae of caregiving in Huntington's disease (HD) have been shown to be extensive, even in comparison with other progressive neurological disorders. Based on observed clinical need, this investigation aimed to identify psychoeducational and emotional support needs of male HD caregivers and to explore the feasibility and utility of a carer support group. Six male caregivers completed quantitative measures assessing depression, anxiety, carer burden, and carer support needs. The men participated in two education and support group sessions, four weeks apart, which were developed with consideration of male support preferences. Qualitative themes arising in these sessions were documented. Questionnaire results showed overall low levels of psychological distress and carer burden. Despite this, the group sessions facilitated disclosure of significant emotional, practical, and relationship challenges arising from HD. Further, a range of psychoeducational and emotional support needs were identified on quantitative and qualitative assessments. Participants strongly endorsed the format of the group and the benefits of participation, highlighting in particular the importance of meeting other men who understood the experience of living with a spouse with HD.

Pilot investigation into the need and feasibility of a psychoeducation and support group for male caregivers of those with Huntington’s disease