Enhancing social care for adults with neuromuscular conditions.
Research type
Research Study
Full title
Enhancing social care for adults with neuromuscular conditions diagnosed in childhood as a preventative approach: A co-produced, Experience-Based Co-Design (EBCD) research study.
IRAS ID
357617
Contact name
George Peat
Contact email
Sponsor organisation
Northumbria University at Newcastle
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
In 2008, the Walton Report highlighted the lack of focus and action to improve social care for young adults with neuromuscular conditions and their informal carers. Since then, studies have repeatedly found adequate social care and support to be lacking, with minimal evidence of practice changes. There is therefore a growing need to move the agenda forward to develop implementable solutions to address known barriers and challenges to social care.
Our proposed project is situated in a social care policy context that has increasingly focused on prevention. The 2014 Care Act for instance, states prevention as a key responsibility for local authorities. Yet, research into what works and for whom in prevention is lacking. This is particularly the case for adults with neuromuscular conditions diagnosed in childhood, many of whom require 24-hour care to meet basic needs. Understanding what prevention means for this group is therefore pressing.
Underpinned by a co-produced ethos, this two-year study (funded by the NIHR Three Schools Prevention Research Programme) will partner with a user-led organisation to, for the first time, bring various stakeholders involved in social care for this group together. Utilising a well-evidenced participatory approach (Experience-based Co-design) we will (a) identify priorities for preventative social care and (b) co-design solutions to these priorities to create a solution/s that can be taken forward for future feasibility testing.
Two phases of online recruitment and data collection will be undertaken. First, we will recruit and interview adults with neuromuscular conditions diagnosed in childhood, informal carers, and social/allied health professionals. As part of this phase, a short film documenting experiences of social care will be produced. In phase two, we will invite participants to attend a series of co-design workshops, culminating in a celebration event where a co-design solution to take forward for feasibility testing will be agreed.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
25/LO/0646
Date of REC Opinion
23 Oct 2025
REC opinion
Further Information Favourable Opinion