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

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 h. 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 < 0.001, t = 10.38, df = 36.4, p < 0.001). Other subgroups were also identified who may be in need of support from professionals but who were not receiving it. Conclusions: There are reports of considerable amounts of care being provided by families to people with MS who may not be receiving the support required from professional caregivers. Further work needs to establish which groups need assistance and what form this assistance should take