Facilitators and barriers in caring for a person with Huntington's disease: input for a remote support program

ObjectivesThis 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.MethodsIn 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.ResultsFour 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.ConclusionThese 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.

Automated summary

This study aims to provide insight into the challenges and facilitators HD caregivers face and their needs for a remote support program. The study found that caregivers face a paradox between self-care and caring for others, and challenges such as lack of HD awareness, taboo and shame, loneliness, concerns about heredity and children, and coping with HD symptoms. The study also identified facilitators such as social networks, professional support, openness, early communication, and daily structure. The findings will be used to develop a blended and self-management remote support program to empower caregivers.