Evaluation report
Navigating fragmented support systems: How family resources and service structures shape parent carers’ mental health in England
Wilkinson K, Stevens M, Norman S, Newlove-Delgado T, Garrood A et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study examines how service system structures in England affect the mental health of parents who care for children with Special Educational Needs and Disabilities (SEND). The research found that parents experience significant stress not only from caregiving itself but also from navigating fragmented health, education, and social care systems. Parents described doing extensive hidden work coordinating care across services, with their wellbeing shaped by service accessibility, communication quality, and their own financial and social resources.
Key points
- SEND prevalence among English children reached 17.3% in 2023, with parent carers experiencing substantially higher psychological distress than other parents
- Parents undertake extensive 'hidden labour' coordinating care across multiple fragmented service systems
- Families with greater social, financial, and informational resources navigated systems more effectively
- Poor inter-service communication, variable professional understanding, and fragmented pathways intensified parent carer stress
- Parent wellbeing was closely linked to children's access to timely and appropriate support
Limitations
This study focuses on parent carer wellbeing rather than direct outcomes for children with SEND. The research is specific to the English context and may not reflect support systems in other countries.
Abstract
Abstract Background The prevalence of Special Educational Needs and Disabilities (SEND) among children in England has risen sharply, reaching 17.3% in 2023. Parent carers of children with SEND experience substantially higher rates of psychological distress than other parents, reflecting intensive caregiving demands and challenges accessing appropriate support. While our earlier national study explored access to mental health support for parent carers, findings indicated that wider service system factors may represent a major but underexplored influence on parent carer wellbeing. This follow-on study examined how interactions with health, education, and social care systems shape parent carer mental health, with the aim of informing actionable service improvements. Methods We conducted a secondary qualitative analysis of open-response survey and interview data, focusing on systemic influences on parent carer mental health. Analysis was informed by a critical realist perspective and conducted using reflexive thematic analysis. Findings were refined through four online co-development workshops with parent carers and professionals, supporting collaborative interpretation of system influences and development of a systems map to illustrate the interacting factors shaping parent carer wellbeing. Results Analysis identified themes organised across four analytical domains: family resources and social context, parent carers’ capacity to navigate service systems, service system functioning, and outcomes for families. Parent carers described extensive “hidden labour” in coordinating care across services. Families’ ability to navigate systems was shaped by unequal social, financial, and informational resources. Fragmented pathways, poor communication, and variable professional understanding intensified parent carer stress. Parent carers’ wellbeing was closely linked to children’s access to timely and appropriate support. The systems map highlighted how parent carer wellbeing emerged through interactions between service accessibility, administrative burden, financial pressures, and families’ capacity to sustain engagement with support systems. Conclusions Parent carer mental health is shaped not only by caregiving demands but also by the organisation and functioning of support systems. Parent carer wellbeing appeared strongly system-dependent, emerging through interactions between service accessibility, coordination demands, family resources, and navigation capacity. Improving service coordination, strengthening relational practice, reducing administrative burden, and addressing inequalities in service navigation may help improve parent carer wellbeing and access to support.