Personal Health Budgets for children with complex medical needs: a rapid scoping review

Lisa Franks

No 8b276_v1, SocArXiv from Center for Open Science

Abstract: Background Children and young people with complex medical needs are increasingly supported at home by family carers, often with statutory healthcare funding. In England, Personal Health Budgets (PHBs) are promoted as mechanisms to increase choice and control in how healthcare funding is used, yet evidence on their use in children’s complex care remains limited. Aim To map and synthesise existing evidence on the experiences and outcomes of children and young people with complex medical needs and their families accessing PHBs or comparable self-directed health funding schemes. Methods A rapid scoping review was conducted following PRISMA-ScR guidance. Eight academic databases were searched alongside targeted grey literature sources, including national bodies, third-sector organisations, and all 42 Integrated Care Boards in England. Sources published between 2010 and January 2026 were screened and charted. Eligible sources addressed children/young people with complex medical needs (and/or families) and examined experiences or outcomes of accessing PHBs in England or comparable health-funded self-directed schemes internationally; social care-only budgets were excluded. Data were synthesised thematically across academic and grey literature. Results Twenty-six sources were included (10 peer-reviewed studies and 16 UK grey literature sources). Three higher-order themes were identified: (1) the promise of choice and control alongside burden transfer to family carers; (2) system conditions shaping PHB viability, including workforce stability, information infrastructure, governance, and transitions; and (3) uneven distribution of benefits and outcomes, with a clear equity gradient linked to family resources and local system context. Conclusions PHBs and comparable schemes can enable continuity and relational care for families of children with complex medical needs, but often do so by redistributing labour and risk onto family carers. Without adequate system support, PHBs risk amplifying inequities rather than delivering equitable personalised care. Substantial gaps remain in UK empirical evidence, highlighting the need for further research to inform the design of sustainable, joined-up models of care.

Date: 2026-02-26
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Persistent link: https://EconPapers.repec.org/RePEc:osf:socarx:8b276_v1

DOI: 10.31219/osf.io/8b276_v1

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