Social care and young adults with neuromuscular conditions diagnosed in childhood. A co-produced scoping review.

Context: The social care needs of young adults with neuromuscular conditions (NMCs) are poorly evidenced. To address the paucity in research, it is first necessary to consolidate current understanding of social care and its presence/absence in the lives of young adults with NMCs.

Objectives: To undertake a co-produced systematic scoping review to scope evidence on the presence of social care in the lives of young adults with NMCs. Specific objectives were to establish the extent of existing evidence, map key characteristics, identify evidence gaps and outline the most salient components of social care (e.g. housing) that exist in the evidence.

Methods: A systematic scoping review was co-produced alongside a group of five young adults with NMCs. Review methods followed published guidelines. Searches were conducted in relevant databases.

Findings: Findings from 25 studies were included representing 599 people with NMCs, 253 informal caregivers, 7 siblings and 11 professionals. The scope of available evidence exists across seven identified components. Namely, informal care, personal assistance, independence, interaction with the social care system, adaptations and equipment to support everyday living, opportunities to socialise and relationships and intimacy. Considerable variance in care quality and availability was identified.

Limitations: Despite a comprehensive literature search, only 25 studies were identified internationally, representative of the health-oriented nature of evidence on this population. Professional perspectives were also lacking.

Implications: Findings highlight where current evidence is situated and where gaps exist. As such, the review provides a foundation to direct vital research in this area.