Living with and managing the invisible symptoms of Multiple Sclerosis
Research type
Research Study
Full title
Seeing the invisible: an exploration of living with, and how people manage the invisible symptoms of Multiple Sclerosis.
IRAS ID
255380
Contact name
Roshan das Nair
Contact email
Sponsor organisation
University of Nottingham
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 8 months, 11 days
Research summary
Living with invisible symptoms is a source of distress for those with Multiple Sclerosis (MS), and this is compounded by the notion that these symptoms are often 'unseen' and not observable by others. People with MS report a lack of both general public and professional awareness and understanding about invisible symptoms and their specific impact. There is also limited exploration in the current literature of people's experience of a cluster of invisible symptoms, rather individual symptoms in isolation (despite the understanding that people usually experience multiple symptoms together). This research project aims to increase our understanding of people’s holistic experiences of living with the invisible symptoms of Multiple Sclerosis (MS) and the strategies they use to manage these in daily life, offering a rich account and exploration of these experiences using visual methods.
Visual methods are a growing field in psychology and have been used in a number of studies to generate rich data that it is proposed would be difficult to access using other approaches. A qualitative 'Photovoice' approach will be taken, utilising photo-production, photo-elicitation and semi-structured interview methods of data collection. Participants will be asked to take photographs that represent their experience of living with and managing invisible symptoms of MS over a period of two weeks, and these photographs will then be used to elicit discussion during an interview with the researcher. A thematic analysis will be conducted to draw together common themes in the participants' experiences. Both visual materials and the participants’ narratives will be presented to public forums to raise awareness and make the invisible experiences of people with MS, visible to others. It is hoped that useful management strategies discussed by participants can be shared and form the basis for future intervention and support.
REC name
East Midlands - Derby Research Ethics Committee
REC reference
19/EM/0196
Date of REC Opinion
18 Sep 2019
REC opinion
Further Information Favourable Opinion