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OBJECTIVE Huntington's disease (HD) is an inherited disorder, characterized by a progressive degeneration of the brain. Due to the nature of the symptoms, the genetic element of the disease, and the fact that there is no cure, HD patients and those in their support network often experience considerable stress and anxiety. With an expansion in Internet(More)
Research into the experience of the Huntington Disease (HD) spousal carer has established that carers experience several unique obstacles within their care-giving role. However, there is still a need to establish methodically the factors that impact on the HD spousal carers' situation and ultimately their quality of life. The aim of this pilot study, which(More)
BACKGROUND Existing research suggests that family caregivers of persons with Huntington's disease (HD) face a distinct series of problems, linked to the complex nature of the disease. Aubeeluck and Buchanan (Clin Genet, 71(5):434-445, 2007) developed and validated a disease-specific measure used to explore caregivers quality of life and assess the efficacy(More)
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,(More)
BACKGROUND Existing research suggests that family caregivers of persons with Huntington's disease face a unique series of problems, linked to the complex nature of the disease. There is little research that explicitly investigates the impact of HD on the quality of life (QoL) of the family caregiver. The purpose of this study was to explore the quality of(More)
Huntington's disease (HD) is a dementia that is genetically inherited as an autosomal-dominant trait with a complete lifetime penetrance. For individuals who develop HD, it is generally the immediate family that take on the responsibility of caring. However, there is a paucity of research into the impact of HD on the quality of life (QoL) of the spousal(More)
There is a wealth of literature that addresses the needs of informal caregivers and the needs of health professionals caring for someone with a life-threatening illness. However, there is a paucity of research that deals with nurses who are caring for their own relative who has a life-threatening illness. This qualitative study explores the information(More)
Huntington's disease is a neurodegenerative disorder that manifests in motor, cognitive and behavioural symptoms, gradually progressing over a number of years, if not decades. The complexity and unpredictability of the disease poses challenges for health-and social-care professionals. This article provides an essential background to the understanding and(More)
OBJECTIVE This article examines the views and opinions of staff from a larger study exploring the palliative and end-of-life care needs of patients with progressive long-term neurological conditions (PLTNC). METHOD Eighty staff, in a range of professions from three types of care services provided to people with PLTNC in England, took part in 14 focus(More)
Juvenile Huntington's disease (JHD) is a rare condition, with only about 5-10% of Huntington's disease cases occurring in individuals under the age of 20 years. Symptoms of JHD include, for example, rigidity, stiffness, awkwardness in walking, and speech difficulty. JHD is caused by an inherited gene mutation that is localized to the short arm of chromosome(More)