SU, carer, and health professional views of adult transition in DMD
Research type
Research Study
Full title
Facilitating positive adult transition in young people with Duchenne’s muscular dystrophy: A Q-sort study of the priorities for service users, carers, and health professionals.
IRAS ID
251237
Contact name
Helen Scott
Contact email
Sponsor organisation
Staffordshire University
Duration of Study in the UK
0 years, 10 months, 1 days
Research summary
To explore the factors impacting on young and emerging adults with Duchenne’s muscular dystrophy (DMD) in relation to their transition from childhood to adulthood in healthcare settings as well as their wider communities. The objective is to explore what factors impact on emerging adults with DMD being able to develop a sense of adult identity, social role, confidence and autonomy, from the viewpoint of service users aged 18-29 years (age group defined as emerging adults by Arnett, 2000), parents and care-givers (non-professional carers), and healthcare professionals. The study, recruiting from the Muscular Dystrophy Clinic in The Robert Jones and Agnes Hunt (RJAH) Orthopaedic Hospital, will use a Q-sort method so that these groups of individuals can rank order possible factors they feel influence positive adult transition, with the aim of identifying areas of convergence and disparity between them. A greater understanding of the priorities and values expressed by these three different expert groups could help inform researchers and professionals when designing interventions, and guide healthcare policy from a person-centred perspective.
REC name
London - Bromley Research Ethics Committee
REC reference
19/LO/0214
Date of REC Opinion
8 Feb 2019
REC opinion
Favourable Opinion