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Facilitators and barriers in caring for a person with Huntington's disease: input for a remote support program.
- Source :
-
Aging & Mental Health . Jan2024, Vol. 28 Issue 1, p178-187. 10p. - Publication Year :
- 2024
-
Abstract
- 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. In total, 27 persons participated in four focus group interviews. Eligible participants were caregivers (n = 19) of a person with HD, and healthcare professionals (n = 8) involved in HD care. Qualitative data were analyzed by two researchers who independently performed an inductive content analysis. 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. 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. [ABSTRACT FROM AUTHOR]
- Subjects :
- *CAREGIVER attitudes
*SERVICES for caregivers
*FOCUS groups
*SOCIAL networks
*QUALITATIVE research
*HEALTH literacy
*PSYCHOLOGY of caregivers
*LONELINESS
*RESEARCH funding
*HUNTINGTON disease
*NEEDS assessment
*CONTENT analysis
*THEMATIC analysis
*SHAME
*PSYCHOLOGICAL adaptation
*TELEMEDICINE
*HEALTH self-care
Subjects
Details
- Language :
- English
- ISSN :
- 13607863
- Volume :
- 28
- Issue :
- 1
- Database :
- Academic Search Index
- Journal :
- Aging & Mental Health
- Publication Type :
- Academic Journal
- Accession number :
- 174558393
- Full Text :
- https://doi.org/10.1080/13607863.2023.2230949