Balancing needs as a family caregiver in Huntington's disease: a qualitative interview study

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Merete Røthing, Kirsti Malterud, Jan C. Frich

Family members in families with severe chronic disease play importantroles in care-giving. In families affected by Huntington’s disease (HD), caregivers encounter practical and emotional challenges and distress.Enduring caregiver burdens may lead to problems and caregivers are inneed of social support and health services to deal with challenges. Wewanted to explore coping strategies and behaviour patterns used byfamily caregivers to care for themselves, while caring for a familymember with HD. Participants were recruited from hospitals andcommunity-based healthcare. The sample represents experiences fromcare-giving in all stages of the disease. We conducted semi-structuredinterviews with 15 family caregivers in Norway. The transcribed materialwas analysed by use of systematic text condensation, a method for cross-case thematic analysis of qualitative data. We found that family membersused various coping strategies, adjusted to the stage and progression ofHD. They tried to regulate information about the disease, balancingconsiderations for protection and disclosure, within and outside thefamily. The participants made efforts to maintain a balance between theirown needs in everyday life and the need for care for affected familymember(s). As the disease progressed, the balance was skewed, and thefamily caregivers’ participation in social activities gradually decreased,resulting in experiences of isolation and frustration. In later stages of thedisease, the need for care gradually overshadowed the caregivers’ ownactivities, and they put their own life on hold. Health professionals andsocial workers should acknowledge that family caregivers balance theirneeds and considerations in coping with HD. They should, therefore,tailor healthcare services and social support to family caregivers’ needsduring the different stages of HD to improve caregivers’ abilities tomaintain some of their own activities, in balance with care-giving.
Original languageEnglish
JournalHealth and Social Care in the Community
Volume23
Issue number5
Pages (from-to)569-576
Number of pages8
ISSN0966-0410
DOIs
Publication statusPublished - Sep 2015

ID: 132679010