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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Co-developing equity-oriented neighbourhood care for children and young people with multiple long-term conditions: a
Nandeeta Samad1, Ingrid Wolfe1,2
1Department of Women & Children's Health, King's College London, London, United Kingdom.
Abstract:
Children and young people (CYP) with multiple long-term conditions (MLTCs) rely on services spanning health, education, and social care, but fragmented pathways may widen inequalities and shift coordination work to families. We aimed to identify priorities for equity-oriented neighbourhood care. We conducted a participatory mixed-methods study informed by the Medical Research Council framework and group concept mapping. Sixteen stakeholders participated: three CYP, seven parents, five healthcare professionals (HCPs), and one community stakeholder. Participants generated, sorted, and rated candidate components. Group data were analysed separately using multidimensional scaling and hierarchical cluster analysis, then synthesised through stakeholder interpretation and consensus. The Rainbow Model of Integrated Care informed interpretation. HCPs and community stakeholders refined 38 candidate neighbourhood-care statements to 27 and generated five clusters; families refined 52 candidate neighbourhood-care statements to 36 and generated four clusters. Seven priorities were co-developed: tailored information, local access, and pathway communication; named coordination; workforce capability; shared care-planning tools; multidisciplinary working; parent/carer support; and embedded mental health support. Communication, local access, and navigation were relatively feasible, whereas mental health and cross-sector integration were resource-dependent. A stakeholder-informed programme theory linked components to accountability, information-sharing, culturally responsive care, earlier escalation, and reduced family burden. The findings translate neighbourhood-care policy into co-developed, equity-oriented priorities for CYP with MLTCs in South London. Communication, local access, and coordination offer practical starting points, while mental health and cross-sector integration require phased resourcing and leadership. These priorities may inform adaptation in European child health systems.
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