Huntington's disease. Part 3: family aspects of HD.
Research into the experience of the Huntington's disease (HD) family caregiver has established that HD carers experience a number of unique obstacles within their caregiving role. This appears to be due to the chronic nature of the disease, both in terms of genetic inheritance and the prolonged disease process itself. Moreover, due to the complex, physical, neurological, psychiatric and genetic elements of HD, service provision may often be unsuitable leaving family members burdened with the main responsibility of care. The complex nature of HD requires service providers, researchers and policy makers to consider each case on an individual basis, thus tailoring service provision to the user and their family's unique requirements.
Aubeeluck
Aimee
A
School of Nursing, Queen's Medical Centre, University of Nottingham.
Moskowitz
Carol Brown
CB
D000223:Adaptation, Psychological; D001294:Attitude to Health; D017028:Caregivers / Q000193:education / Q000523:psychology*; D017281:Cost of Illness; D005190:Family / Q000523:psychology*; D005820:Genetic Testing; D006301:Health Services Needs and Demand; D006379:Helping Behavior; D006701:Home Nursing / Q000458:organization & administration / Q000523:psychology; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis / Q000235:genetics / Q000517:prevention & control*; D010347:Patient Care Planning; D010549:Personal Satisfaction; D011788:Quality of Life / Q000523:psychology*; D012380:Role; D012944:Social Support