Qualitative study of self-management in people with NMDs
Research type
Research Study
Full title
Self-management in Neuromuscular Diseases: a qualitative exploration of the patient perspective
IRAS ID
256510
Contact name
Gita Ramdharry
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2019/02/101, Data protection reference number
Duration of Study in the UK
1 years, 1 months, 23 days
Research summary
Neuromuscular diseases (NMDs) as a group make up many different and varying conditions. People living with neuromuscular diseases should be at the heart of decisions about their healthcare and how services are delivered. Self-management support which can be tailored to individual needs and preferences has been shown to be effective in other neurological diseases. They provide tailored information and resources, and support the person to explore options, problem solve, set goals, and take action.
This study will be a series of interviews with people with muscle wasting conditions to explore strategies they use to make choices and live well with their condition. We will intentionally recruit people to vary the age of onset, diagnosis and speed of disease progression. We will also purposively sample to ensure a range of individuals from a wide range of socio-economic and ethnic backgrounds to make the study more inclusive and representative of the population.
The outcomes of this study will be twofold:
Firstly, to gain an understanding of what is important for successful self-management to be used for future project planning, monitoring and measurement.
Secondly, we hope to produce recommendations for preferences for delivery and type of self-management support.
REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
19/NW/0549
Date of REC Opinion
28 Aug 2019
REC opinion
Favourable Opinion