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Living with motor neurone disease: lives, experiences of services and suggestions for change
- Authors:
- HUGHES Rhidian A., et al
- Journal article citation:
- Health and Social Care in the Community, 13(1), January 2005, pp.64-74.
- Publisher:
- Wiley
Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in understanding of these people's lives, experiences of services and their suggestions for change. This study addressed the questions: What are the lived experiences of people living with MND?; What are people's experiences of services?; and Can improvements to care be identified? A qualitative research design was adopted using semi-structured interviews. The topic guide was developed from existing literature. The study was based in 3 London boroughs. People living with MND and professionals were drawn from a database at King's College Hospital and through 'snowball' sampling. Nine people with MND, 5 carers/family members and 15 professionals took part in interviews, taped, transcribed and checked for accuracy against the original recordings. Themes within the interviews were coded and grouped. Findings are presented within 3 substantive groups: the impact of MND on people's lives (physical impacts including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including coping methods); experiences of services (accessing service entitlements, information sources, professionals' attitudes and approaches, and professionals' knowledge and understanding of MND); and suggestions for service change (better information and communication, including information on service entitlements; improved knowledge among professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. Concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research.