HD research news - medical research into treatment & prevention
Exploring the palliative care needs of service users with neurological conditions
September 2007
People with progressive long-term neurological conditions such as HD require palliative focused health and social care for many years. It is essential that high quality, flexible, supportive and tailored care is available to maximise abilities and minimise the effects of disease for a long as possible. In its advanced stages HD presents a range of issues that make the planning and delivery of palliative care complex; implications for the family and issues surrounding planning for future end of life care are examples of many important concerns.
This two-year project (Oct 2006-2008) explores the palliative and end of life care needs of adults with progressive long-term neurological conditions. It focuses on the most common conditions: Motor Neurone Disease (MND), Multiple Sclerosis (MS), Parkinson's disease (PD), with a special emphasis on Huntington's Disease (HD).
The study draws on the experiences of people who use and deliver services to inform future palliative care provision. It uses a multi-method design including: interviews, questionnaires, focus groups and an audit of care in the last four weeks of life across three UK service providers:
- six neurological care centres run by a Charity;
- an independent hospice in an inner city;
- an NHS specialist multidisciplinary out-patient clinic for people affected by Huntington's Disease.
The objectives of the study are to:
- Look at the evidence for palliative care provision in the literature;
- Talk to service users and their families about living with a long-term neurological condition such as HD;
- Talk to health and social care professionals who deliver care about their experiences and needs;
- Assess the quality of life of informal carers/families of people with HD;
- Explore how and where care is provided in the last 4 weeks of life.
- Examine the experiences of bereaved family carers.
Findings of the study will help inform and encourage best practice and will be reported in Oct 2008.
We thank the HDA for their funding and support of this project and Sue Ryder Care for their continued involvement.
A PhD study focusing on the palliative care needs of those affected by HD is also being carried alongside this project in the Nottingham and Derby areas.
Research Team
- Eleanor Wilson - Research Fellow 1
- Professor Jane Seymour 1
Contributors
- Aimee Aubeeluck - Lecturer 1
- Brian Crosbie - Research Associate 1
- Rachel Taylor - Huntington's Disease Specialist Nurse, National Hospital for Neurology and Neurosurgery, London
- Christina Mason - Teaching Fellow, University of East Anglia 1
- Sue Ryder Care Centre for Palliative and End of Life Studies
- School of Nursing
- University of Nottingham
Contact details
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