Participants’, caregivers’, and professionals’ experiences with a group-based rehabilitation program for Huntington’s disease: a qualitative study

BMC Health Services Research

Alf Reiar Berge³  Merete Røthing²  Jan C Frich¹ 

[1] Department of Neurology, Oslo University Hospital, N-0424 Oslo, Norway;Research Network on Integrated Health Care, Helse Fonna Local Health Authority, PO Box 2170, N-5504 Haugesund, Norway;Rehab-Nor, K. K. Lien Vei 50 I, N-4812 Kongshavn, Norway

关键词: Health personnel;    Caregivers;    Patients;    Qualitative study;    Huntington’s disease;    Rehabilitation;   

Others  :  1126426
DOI  :  10.1186/1472-6963-14-395

 received in 2013-11-11, accepted in 2014-09-15,  发布年份 2014

【 摘 要 】

Background

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 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?

Methods

Qualitative, 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.

Results

Some 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.

Conclusions

Group-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.

【 授权许可】

   
2014 Frich et al.; licensee BioMed Central Ltd.

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