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

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.

Family caregivers' views on coordination of care in Huntington's disease: a qualitative study

“…Knowledge sharing may promote a common understanding of the situation and the challenges at hand and may reveal knowledge that family caregivers do not want or need to share with health professionals. While most health professionals may have general knowledge about HD, the contexts for the illness course and family histories differ and may need individual care and support . Mutual dialogues may promote knowledge sharing in the form of RC, which can serve as a framework where new understanding of changes and challenges based on shared knowledge can become a precondition for shared goals and for revising functional goals in the care process .…”

Shifting mindsets: a realist synthesis of evidence from self-management support training

“…Twenty of the included articles provided data for this theory . This theory describes how HCPs attempt to integrate SMS into clinical practice, influenced by the reasoning processes described in the earlier theories.…”

“…The impact of PNCs on cognition could make it challenging for patients to identify meaningful goals and to plan or perform SM activities (C). HCPs responded to these challenges (M) by providing more time, involving family members and delivering interventions in the home environment where patients with cognitive impairment may be more at ease(O) …”

“…Twenty of the included articles provided data for this theory. 29,30,34,37,39,[41][42][43][44]48,53,55,57,58,60,64,[67][68][69][70] This theory describes how HCPs attempt to integrate SMS into clinical practice, influenced by the reasoning processes described in the earlier theories. Health care professionals (HCPs) reasoned that some of their patients were not able to self-manage, meaning that supporting self-management was not worthwhile (M).…”

“…HCPs responded to these challenges (M) by providing more time, involving family members and delivering interventions in the home environment where patients with cognitive impairment may be more at ease(O). 67,68 In settings where there was continuity of care (C), it was easier for HCPs to identify when they felt was the 'right time' for SMS (M) and so effective support could be provided when the patient needed it, increasing job satisfaction (O). Smith et al 64 describe in their paper how they found that:…”