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Book

On nursing Huntington's chorea

Author:
GARDHAM Frank
Publisher:
Association to Combat Huntington's Chorea
Publication year:
1982
Pagination:
55p.,bibliog.
Place of publication:
Hinckley
Book

Living with Huntington's Disease: a book for patients and families

Author:
PHILLIPS Dennis H
Publisher:
University of Wisconsin Press
Publication year:
1982
Pagination:
xix,230p.,illus.,bibliog.
Place of publication:
London
Book

Remedial involvement in the management of patients with Huntington's Chorea

Author:
LAVERS Angela
Publisher:
Association to Combat Huntington's Chorea
Publication year:
1981
Pagination:
163p.
Place of publication:
Hinckley

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Book

Learning to live with Huntington's disease: one family's story

Author:
SULAIMAN Sandy
Publisher:
Jessica Kingsley
Publication year:
2007
Pagination:
176p.
Place of publication:
London

Huntington's Disease (HD) is a hereditary illness passed on via a defective gene. There is a fifty per cent chance of inheriting it from a parent and there is yet no cure. Learning to Live with Huntington's Disease is one family's poignant story of coping with the symptoms, the diagnosis and the effects of HD. This book presents the struggles and strengths of the whole family when one member loses their future to a terminal illness. Told by the sufferer and other significant family members, the individuals describe the burden of watching yourself and others for symptoms of HD, including involuntary movements, depression, clumsiness, weight loss, slurred speech and sometimes violent tendencies. The family recounts the challenge to remain united and describes how they approached issues such as whether or not to be tested for HD, how much information to disclose to relatives, whether to have children or not and guilt if one sibling inherits the illness and one does not.

Journal article

Capturing the Huntington's disease spousal carer experience: a preliminary investigation using the ‘Photovoice’ method

Authors:
AUBELUCK Aimee, BUCHANAN Heather
Journal article citation:
Dementia: the International Journal of Social Research and Practice, 5(1), February 2006, pp.95-116.
Publisher:
Sage

The purpose of this exploratory study was to capture and describe the experiences of family carers of Huntington's disease (HD) patients, specifically in relation to their Quality of Life (QoL). Visual representations of QoL were gathered using ‘Photovoice’. Five spousal carers photographed and described elements of their life in which they felt their QoL was being enhanced or compromised. Using content analysis, nine manifest themes were identified and tentative latent inferences were made in relation to these themes. Although some positive issues did emerge, these were minimal compared to the negative impact that HD had on carers' overall QoL. Seven out of the nine themes that emerged were also evident in at least one of the seven QoL domains on the Comprehensive Quality of Life scale – Adult Version (ComQoL-A5); suggesting that QoL is negatively affected for these spousal carers. Findings are discussed in terms of implications for carers and health care professionals.

Journal article

Social system responses to Huntington disease

Authors:
KESSLER Seymour, BLOCH Maurice
Journal article citation:
Family Process, 28(1), March 1989, pp.59-68.
Publisher:
Wiley-Blackwell

Examines aspects of the impact of HD on sufferers and family members.

Journal article

Huntington's Chorea and the young person at risk

Authors:
KORER J.R., FITZSIMMONS J.S.
Journal article citation:
British Journal of Social Work, 17(5), 1987, pp.521-534.
Publisher:
Oxford University Press

Reports on a study of the family life of young people at risk and discusses their counselling needs.

Journal article Full text available online for free

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-Blackwell

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)

Journal article

Children and adolescents providing care to a parent with Huntington’s Disease: disease symptoms, caregiving tasks and young carer well-being

Author:
KAVANAUGH Melinda S.
Journal article citation:
Child and Youth Care Forum, 43(6), 2014, pp.675-690.
Publisher:
Springer

Objective: Guided by the stress process model, this exploratory study sought to describe children and adolescents who care for a parent with Huntington’s disease (HD) and their caregiving experience, by detailing previously unknown relationships between caregiving, parent/child conflict, school problems, and psychological well-being of child/adolescent caregivers. Methods: This cross-sectional study used semi-structured interviews with a purposive sample of 40 children and adolescents, aged 12–20, who care for a parent with HD. Data was analysed using descriptive and correlational statistics. Measures included the Children’s’ Depression Inventory, The Conflict Behaviour Questionnaire, and the Multidimensional Assessment of Caring Activities. Results: Study participants have substantial caregiving responsibilities (>11), with half providing personal care to a parent. The majority experienced school problems and conflict with parents (60 and 92 % respectively). Caregiving tasks were associated with problems with school and conflict with the ill parent. Furthermore, parental symptoms were associated with poor psychological wellbeing, parental conflict, and school problems for the caregivers. Conclusion: Children and adolescents are involved in numerous tasks and describe difficulties with their daily life and well-being. Results highlight the need for the development of support services for caregivers, as well best care practices for problematic HD symptoms. Study outcomes address minimizing the potential for negative caregiving experiences of these vulnerable caregivers. (Edited publisher abstract)

Journal article

Residential care for those with neurological conditions: an exploration of three specialist neurological care facilities in the UK

Authors:
WILSON Eleanor, AUBEELUCK Aimee
Journal article citation:
Journal of Care Services Management, 7(2), 2013, pp.61-71.
Publisher:
Taylor and Francis

Neurological conditions account for a high number of years lived with disability. Progressive long-term neurological conditions include Huntington's disease, Parkinson's disease, motor neurone disease, and multiple sclerosis. A multidisciplinary approach is recommended, but there is little evidence of the types of support needed for people living in long-term residential care facilities with these conditions. The authors used a qualitative case study approach to evaluate the care provided by three long-term residential care facilities. Focus groups (n = 5), interviews (n = 13), and observations were undertaken to engage 35 staff members, service users, and family members. Findings show an ethos of personalised and tailored care where continuity of staffing created a homely environment. Physical spaces were adapted to meet the needs of residents. On-site physiotherapy services were provided for all residents to proactively manage conditions and maintain as much function as possible. A range of social activities were also provided to engage residents in a variety of ways. These were felt to be delivered by dedicated staff members in specialist spaces and in consultation with residents. Participants based at the facilities reported high levels of specialist expertise. Findings from this evaluation highlight a number of areas of best practice. However, large-scale, longitudinal studies designed to capture measurable outcomes or provide cost–benefits analysis are now needed. (Edited publisher abstract)

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