Self-management for people with MS. Version (1)
Research type
Research Study
Full title
Self-management support for people affected by Multiple Sclerosis
IRAS ID
157597
Contact name
Badrieh Al Abbad
Contact email
Duration of Study in the UK
1 years, 2 months, 30 days
Research summary
This study comprises three phases, following a systematic review of literature:
Phase(1) Ethnographic study
Purpose: explore in detail the underpinning philosophy and practice of self-management programmes for people affected by Multiple Sclerosis (PaMS) in three contrasting settings: a) NHS hospital-based setting; b) NHS community based setting; c) private community based setting. Three local services delivered in these three settings will be involved in group interviews and in observation.
Group interviews: each team delivering each service will be interviewed once as a group to explore philosophy and practice including the content and extent of the services they provide to support self-management for PaMS.
Observation of the service in action: aspects of the service that can be observed, such as group sessions, education events and workshops, will be observed by the researcher to gain further insight into the service provided.
Phase(2) Individual interviews with PaMS
Purpose: explore experiences, expectations and perceptions of PaMS in self-managing the condition. This phase will involve individual semi-structured interviews with a total of 6 PaMS from across the three above mentioned services. Participants will be recruited through each service, who will be asked to forward to all their clients an invitation to volunteer to participate in the study and an information sheet explaining about the study.
Phase(3) Consensus phase:
Data from phases 1 and 2 will be synthesised along with data from the systematic review of self-management programmes for PaMS; a draft model of perceived best-practice of self-management of MS will be developed. Six health professionals involved in providing self-management programmes or support for PaMS and six MS service users will be invited to participate in a process of agreeing the content of a model of best practice: this will be achieved through an iterative process involving rating components of a proposed model, and a group discussion to refine the model.REC name
East of Scotland Research Ethics Service REC 1
REC reference
15/ES/0010
Date of REC Opinion
29 Jan 2015
REC opinion
Further Information Favourable Opinion