Towards improved partnerships between health professionals and family caregivers in Huntington's disease: a qualitative study
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Background: Huntington's disease (HD) is an autosomal-dominant inherited neurological disease characterised by progressive cognitive, motoric and behavioural symptoms. HD results in loss of functions and an increasing need for health care services in the home and later in a nursing home and there is still no cure. There is a need for better understanding of the impact of HD on families and family caregivers and ways to develop constructive collaboration between families and health professionals.
Aims of the study: The overall aim of this study is to contribute with knowledge to promote and support partnerships between health professionals and family caregivers managing HD. This thesis is based on three sub-studies with three specific aims. These were to explore 1) family caregivers’ experiences with the impact of HD on the family structure, dynamics and roles in the family, 2) coping strategies and behaviour patterns used by family caregivers to care for themselves while caring for a family member with HD, and 3) experiences and expectations of family caregivers' concerning collaboration with health professionals.
Methods: We invited family caregivers to participate by request through hospital departments, health institutions in municipalities and the Norwegian Huntington Association. In a qualitative study, we conducted individual semi-structured interviews with 15 adult participants in caregiver roles. Data were analysed with systematic text condensation (STC).
Results: Our results suggest that the family caregiver role is shaped by gradual changes in family dynamics as decreased functioning of the HD-affected family member and the corresponding needs for care develop. Family caregivers reported conflicts between the roles of caregiver and individual family member (a role wherein they had needs of their own). This was particularly evident when family caregivers described experiences as caregivers in childhood or young adolescence, burdened with care responsibilities normally provided by adult family members. Family caregivers experienced changes in the qualities of familiar relationships. Emotional challenges related to HD characteristics and family members' different reactions to the illness rendered families vulnerable to fragmentation and lack of social support. In the early stages of the disease, family caregivers searched for information about HD and wanted to establish trustful relationships with health professionals. To manage challenges in the illness situation, family caregivers tried to balance their own needs for daily activities and the family members' needs for care. In the later stages, family caregivers experienced HD as overshadowing other activities of everyday life and felt that their own lives were “on hold”. Participants wanted to take part in daily work outside the home because they felt valued as individuals and needed the social support. Family caregivers expected to be involved in collaboration with health professionals and desired acknowledgment for their competence in providing HD care in the home setting and changes in the family. Participants expected to encounter health professionals with knowledge of HD, and time to maintain trustful relationships and continuous knowledge sharing. However, in their encounters with health care services, family caregivers reported lack of coordination of care services and unclear roles and responsibilities among involved parties.
Conclusions: Health professionals should assess family needs and must acknowledge the competence of family caregivers in the context of home care. The family caregiver role is important to recognise through establishment of partnerships based on shared knowledge, adjusted individual support and flexible health care. It is necessary to give children and young family members special attention related to needs and support. Health professionals should arrange for adjusted support that allows caregivers to combine caregiving with valued personal activities, and prevent family fragmentation. To improve the quality of care, health professionals should establish clarity of roles and distribution of responsibilities in a coordinated care course that includes the preferences of family caregivers.