Lived experience of multiple sclerosis (MS) research participation
Research type
Research Study
Full title
An interpretative phenomenological analysis (IPA) of the experiences of people with multiple sclerosis (pwMS) taking part in MS research
IRAS ID
267148
Contact name
Lorraine Trainor
Contact email
Sponsor organisation
University of Salford
Clinicaltrials.gov Identifier
HSR1819-063, University Ethics
Duration of Study in the UK
1 years, 3 months, 1 days
Research summary
This is a longitudinal qualitative interpretative analysis (IPA) study involving people with multiple sclerosis (pwMS) sharing their account of taking part in MS research through semi structured interviews. The project aims to identify a rich understanding and to ‘reveal’ meaning from accounts of pwMS who are taking part in research.
Potential participants with MS who are taking part in separate parallel MS research [hereafter known as the ‘the anchor study’] will be identified through the Clinical Research Facility, MS clinical appointments and via Principal Investigators for other MS studies at a local hospital. Participants of the ‘anchor MS study’ will be invited to take part in this qualitative study in parallel with but separate to the ‘anchor study’. The ‘anchor study’ will be any ongoing NRES approved MS study but may be qualitative, quantitative interventional or non-interventional in design.
Participants of this study will undertake semi-structured interviews. Interviews will be audio recorded and transcribed. Transcribed interviews will be analysed using IPA principles by the main researcher.
To enhance authenticity, ‘respondent validation’ will be undertaken by sharing emergent themes from the transcripts with interviewees. Additionally (fully anonymised & fully de-identified) excerpts of the transcripts will, in parallel, be evaluated by a co-productive research team of people with MS, who have helped to shape the design of the study. These are people with MS who have had input into the conduct or design of the study and who have experience and expertise in the condition of MS (they are not research participants but are essentially an expert steering group)
IPA will produce an in-depth evaluation representing the research participants’ lived experience and meaning of taking part in MS research, (and validated by pwMS). It is hoped that this research will inform research potentially enhance the holistic approach of research-clinicians involved in the conduct of research.REC name
South Central - Berkshire Research Ethics Committee
REC reference
19/SC/0424
Date of REC Opinion
8 Aug 2019
REC opinion
Favourable Opinion