Abstract
BackgroundResearch suggests that rehabilitation is beneficial for persons with Huntington’s disease (HD), but there is limited knowledge about participants’ experiences with residential rehabilitation programs. We therefore did a study to explore patients’, family caregivers’, and health professionals’ experiences with a group-based, residential rehabilitation program for individuals with early to mid-stage HD, focusing on three research questions: How did participants experience the structure and content of the program? What outcomes did patients experience? What challenges and success factors did health professionals report?MethodsQualitative, explorative study, collecting data through in-depth interviews with nine family caregivers and 11 patients with early- and mid-stage HD, and focus group interviews with 15 health professionals. Data were analysed using systematic text condensation.ResultsSome participants reported difficulties with defining individual rehabilitation goals, but written individualised plans and schedules were appreciated by all participants. Participants highlighted being member of an "HD-group" as a valuable experience, though tensions and conflicts could occur in groups. Participants typically reported improved gait and balance, increased self-confidence, and social benefits as outcomes. The intensive schedule was acceptable for most participants, but adjustments had been made to allow participants more time to eat, shower and dress between sessions. Success factors reported by health professionals were assigning every patient with a contact person, using clinical tests results to motivate patients, and supervising health professionals in patients’ local municipalities.ConclusionsGroup-based residental rehabilitation was feasible for individuals with early- and mid-stage HD, and participants emphasised mental and social outcomes in addition to physical outcomes. The needs of persons with HD should be considerd when designing programs, to secure structure, continuity in personnel, and sufficient time between sessions.
Highlights
Research suggests that rehabilitation is beneficial for persons with Huntington’s disease (HD), but there is limited knowledge about participants’ experiences with residential rehabilitation programs
We have structured our findings in three main themes: Program structure and content, outcomes experienced by participants, and health professionals’ views on challenges and success factors
Main findings Our study suggests that some participants reported difficulties with defining individual rehabilitation goals, but written individualised plans and schedules were appreciated by all participants
Summary
Research suggests that rehabilitation is beneficial for persons with Huntington’s disease (HD), but there is limited knowledge about participants’ experiences with residential rehabilitation programs. We did a study to explore patients’, family caregivers’, and health professionals’ experiences with a group-based, residential rehabilitation program for individuals with early to mid-stage HD, focusing on three research questions: How did participants experience the structure and content of the program? A randomized study of a community-based exercise program found that the program was safe, feasible and acceptable, and suggests that structured exercise has benefits for persons with HD [14]. Zinzi et al evaluated patients’ and caregivers’ experiences with an inpatient rehabilitation program [12] and found that caregivers reported gaining more knowledge of HD, a better sense of control and quality of life, empowerment in relations to doctors, and increased hope for their children at risk. Patients reported increased self-esteem and a sense of self-worth, and they emphasized being part of a community and establishing new significant relationships [12]
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