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Article Abstract
Objectives: This study aims to provide more insight into possible barriers and facilitators caregivers of people with Huntington's disease (HD) encounter, and what their needs and wishes are regarding a remote support program.
Methods: In total, 27 persons participated in four focus group interviews. Eligible participants were caregivers ( = 19) of a person with HD, and healthcare professionals ( = 8) involved in HD care. Qualitative data were analyzed by two researchers who independently performed an inductive content analysis.
Results: Four major themes emerged from the data, including (1) a paradox between taking care of yourself and caring for others; (2) challenges HD caregivers face in daily life, including lack of HD awareness, taboo and shame, feelings of loneliness, concerns about heredity and children, and coping with HD symptoms; (3) facilitators in the caregiving process, including a social network, professional support, openness, talking in early phases, and daily structure; (4) needs regarding a support program.
Conclusion: These insights will be used to develop a remote support program for HD caregivers, using a blended and self-management approach. Newly developed and tailored support should be aimed at empowering caregivers in their role and help them cope with their situation, taking into account barriers and facilitators.
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| http://dx.doi.org/10.1080/13607863.2023.2230949 | DOI Listing |
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