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The self-management needs of those who have primary or secondary progressive multiple sclerosis.

Yoward, L S, Stannage, E, Whiffin, L and Dawson, P (2017) The self-management needs of those who have primary or secondary progressive multiple sclerosis. In: Physiotherapy UK, November 2017. (In Press)

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Title: The self-management needs of those who have primary or secondary progressive multiple sclerosis
Author(s): Yoward S.1, Stannage E.1, Whiffin L.1, Dawson P.2
Institute(s): 1York St John University, York, United Kingdom, 2Northumbria University, Newcastle upon Tyne, United Kingdom
Text: Purpose: Healthcare resources are increasingly in demand. There is a need to support self-management with a view to enhancing the lives of patients living with long term conditions and decreasing dependence on health and social care.
Self-management support is available to people with long term conditions in the UK and condition-specific programmes have been developed so that information can be tailored to participants as generic programmes might not be specific enough for individual needs.
The aim of this study was to explore the self-management needs of those with progressive multiple sclerosis with the objectives of identifying issues in self-management and exploring perception of family support requirements and perception of methods of self-management support including lay-led programmes and the healthcare professional role.
Methods: A qualitative approach was used and the research design included two people who have multiple sclerosis. Adults with secondary or primary progressive multiple sclerosis gave their consent to be audio-recorded during individual interviews. These were transcribed and the transcription confirmed by participants. Two of the research team, including one who is a service user with multiple sclerosis, analysed the data, independently initially and then collaboratively with the rest of the team, to generate themes.
Results: Five men and six women, whose average age was 59, consented to be interviewed. Main themes identified were: attitudes and feelings towards self-management; barriers to self-management; important issues around self-management; methods of delivery including perceptions of lay-led self-management support; MS and my whole life; family/carer needs; professionals' role; self-education.
Conclusion(s): Participants' views of self-management were varied indicating that a single version of self-management support is unlikely to be successful for all. Participants had different views on self-management from feelings of abandonment to using common sense and not letting it beat them. There were mixed views on access to self-management programmes for family members with acknowledgement that this could be useful but there was recognition that this might concern carers. There is some support for lay involvement and group settings were highlighted in the current study as a positive notion by some but these sentiments were not unanimous. There was also lack of agreement on the desire for information; whilst accepted as useful, some reported not always wanting to know. An additional barrier to self-managing was lack of support from healthcare practitioners and/or discharge from services as many referred to the value of access to the MS specialist nurse specifically. People with progressive multiple sclerosis, and potentially family/carers, need access to diverse resources as and when required. Self-management support should be part of healthcare rather than in place of access to relevant professionals.
Implications: People with progressive multiple sclerosis require continued access to health care practitioners when self-managing their condition.
A one size fits all approach to self-management support is not appropriate for people with progressive multiple sclerosis and a varied 'menu' of resources and support should be developed to accommodate diverse needs and to tailor support to the individual.
Key-Words: Self-management, Multiple Sclerosis
Funding acknowledgements: This work was supported by a grant from the Chartered Society of Physiotherapy Charitable Trust (grant number PRF/13/A10)

Item Type: Conference or Workshop Item (Poster)
Status: In Press
Subjects: R Medicine > RM Therapeutics. Pharmacology
School/Department: School of Science, Technology and Health
URI: https://ray.yorksj.ac.uk/id/eprint/2469

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