Exploring the self-management needs of people who have progressive MS
Research type
Research Study
Full title
Self-management: what are the perceived needs of those who have progressive forms of multiple sclerosis (MS)?
IRAS ID
136152
Contact name
Louise Samantha Yoward
Contact email
Sponsor organisation
York St John University
Research summary
The overall aim of this study is to explore the needs of those who have progressive forms of multiple sclerosis (MS) to support self-management of their condition. To achieve this aim, the objectives of the study will be to:
Identify issues of importance to be included within self-management programmes
Explore valued methods of delivery of self-management programmes
Identify the value and role of professionals within service-user education and self-management programmes from the perspective of those who have MS
Explore the perception and value of lay-led education in self-management programmes
Explore from the perspective of the person with MS, the educational needs of carers/family members
In order to meet these objectives, people who have progressive forms of MS (PWMS) will be invited to attend a one-to-one interview with a semi-structured format. Questions will be broadly open-ended to invite opinion and perception of self-management needs and an interview schedule will be constructed to facilitate the focus of the interview without restricting the issues of concern and relevance to the participant. The interview will occur in a mutually agreed place and is estimated to take up to one hour. It shall be audio-taped and transcribed with member checking.
Analysis of the data will be undertaken by two people using framework analysis. Analysis will commence from the first interview so that understanding can be included, where appropriate, in future interviews and to inform the point when (if) data saturation has occurred.REC name
East of England - Cambridgeshire and Hertfordshire Research Ethics Committee
REC reference
14/EE/1157
Date of REC Opinion
25 Sep 2014
REC opinion
Further Information Favourable Opinion