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Isleworth, Middlesex, TW7 5DU, UK. Tel: 020 8891 0121 ext 2527. FAX: 020 8891 8247 e-mail [email protected]. Acknowledgement to the ...

The nature of care giving in a community sample of people with multiple sclerosis. +Louise O’Hara, * Lorraine De Souza, *Lorely Ide. *Centre for Research in Rehabilitation, Brunel University, UK +Nfer-Nelson Ltd

Author for correspondence Professor Lorraine H De Souza Address: Centre for Research in Rehabilitation, Brunel University, Osterley Campus, Isleworth, Middlesex, TW7 5DU, UK. Tel: 020 8891 0121 ext 2527 FAX: 020 8891 8247 e-mail [email protected]

Acknowledgement to the Physiotherapy Research Foundation UK for funding the project

The nature of care giving in a community sample of people with multiple sclerosis.

Abstract Purpose The provision of informal care plays a crucial role in supporting those with long term illness such as MS to stay in the community, but there is no recent United Kingdom (UK) research into the nature of this care provision and how it interacts with professional community care. The aim of this study was to investigate the nature of informal and professional care in a community population of people with MS living in the UK from the perspectives of people with MS. Method Data on the Standard Day Dependency Record (SDDR), Barthel Index, a measure of disability, and SF-36 were collected from a community sample of volunteers with MS from a postal questionnaire and visits from researchers Results The response rate was 61%, (n=169). Respondents in this study were most likely to be assisted by family rather than health or social service professionals and the help was considered essential for approximately 70% of individuals. Only 15% of respondents in this survey received visits from a professional in the preceding 24 hours. There was a subgroup who considered help to be significantly more essential and who required assistance on more occasions by the SDDR (t=13.01, df=622, p

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