Search results for ‘Subject term:"huntingtons disease"’ Sort:
Results 1 - 4 of 4
Balancing needs as a family caregiver in Huntington's disease: a qualitative interview study
- Authors:
- ROTHING Merete, MALTERUD Kirsti, FRICH Jan C.
- Journal article citation:
- Health and Social Care in the Community, 23(5), 2015, pp.569-576.
- Publisher:
- Wiley
Family members in families with severe chronic disease play important roles 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 in need of social support and health services to deal with challenges. The authors wanted to explore coping strategies and behaviour patterns used by family caregivers to care for themselves, while caring for a family member with HD. Participants were recruited from hospitals and community-based healthcare. The sample represents experiences from care-giving in all stages of the disease. The authors conducted semi-structured interviews with 15 family caregivers in Norway. The transcribed material was analysed by use of systematic text condensation, a method for cross-case thematic analysis of qualitative data. We found that family members used various coping strategies, adjusted to the stage and progression of HD. They tried to regulate information about the disease, balancing considerations for protection and disclosure, within and outside the family. The participants made efforts to maintain a balance between their own needs in everyday life and the need for care for affected family member(s). As the disease progressed, the balance was skewed, and the family caregivers' participation in social activities gradually decreased, resulting in experiences of isolation and frustration. In later stages of the disease, the need for care gradually overshadowed the caregivers' own activities, and they put their own life on hold. Health professionals and social workers should acknowledge that family caregivers balance their needs and considerations in coping with HD. They should, therefore, tailor healthcare services and social support to family caregivers' needs during the different stages of HD to improve caregivers' abilities to maintain some of their own activities, in balance with care-giving. (Edited publisher abstract)
Supportive care for patients with Huntington's disease and their carers
- Author:
- -
- Journal article citation:
- Nursing Times, 16.12.08, 2008, p.43.
- Publisher:
- Nursing Times
Briefly summarises the findings of a study which explored the needs of patients with Huntington's disease and family carers, and their views on support services provided by a community-based unit.
"It'd be nice if someone asked me how I was doing. Like, 'cause I will have an answer": exploring support needs of young carers of a parent with Huntington's disease
- Authors:
- KAVANAUGH Melinda S., NOH Hyunjin, STUDER Lynette
- Journal article citation:
- Vulnerable Children and Youth Studies, 10(1), 2015, pp.12-25.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This study explores the support needs of children and adolescents aged 12-20, who provide care to a parent with Huntington's disease (HD), often referred to as 'young carers.' Stigmatizing symptoms of HD, including depression, personality change, psychosis, and involuntary movements, often leave family caregivers isolated with little support. Increasing attention is paid to the support of adult caregivers, yet little attention has been given to young carers in the family, including support needs they describe as important. Individual interviews were conducted with 40 young carers from 18 states in the USA, recruited through the Huntington's Disease Society of America. Participants were asked two open-ended questions: (1) what things can people do to help you care for your mom/dad? (2) what things do you need to help you care for your mom/dad that you do not currently have? Content analysis was used to analyse the interview transcripts. Data analysis elicited three main categories associated with support needs: instrumental support, emotional support, and personal needs. Each category detailed the need for friends to be understanding, others to show care for the caregiver and for the young carers to receive assistance with caregiving tasks. Also identified were a need for information and advice about caregiving, and the creation of outlets, such as support groups, to help them feel less alone and to normalise their situation. The study results provide clear implications for social work and health care professionals in designing support programs and services targeted to young carers of a parent with HD. (Edited publisher abstract)
Younger people with dementia: planning, practice and development
- Editors:
- COX Sylvia, KEADY John
- Publisher:
- Jessica Kingsley
- Publication year:
- 1999
- Pagination:
- 328p.,bibliog.
- Place of publication:
- London
Includes chapters on: a medical overview of assessment and service responses for younger people with dementia; epidemiological issues; needs assessment and individual and strategic care planning; multi agency perspectives and person centred planning; HIV related brain impairment; Huntington's Disease; learning disabilities and dementia; alcohol related brain impairment; experiencing the worlds of younger people with dementia; negotiating caregiving and employment; young carers; family caregiving; psychosocial interventions; support groups for people with early stage Alzheimer's Disease; training and younger people with dementia; and developing an agenda for change in service provision.