More than 86,000 children in England live with life-limiting conditions, yet their families often navigate a fragmented healthcare system with little coordinated support. These families are left to manage complex medical care around the clock, with parents acting as unpaid nurses and care coordinators. The problem is growing: the number of affected children is predicted to exceed 121,000 by 2030, with higher rates among minoritised ethnic groups and deprived areas. Current services are not keeping pace with medical advances that keep these children alive longer. This research tackles four specific gaps: integrating children’s hospices into the wider health system, testing whether short-term specialist palliative care teams are effective and cost-effective, implementing a carer-centred support tool (CSNAT-I) to improve parent-carers’ health, and developing better support for siblings. The team will use surveys, interviews, and co-design workshops with families and professionals, then feasibility-test interventions in real hospice and hospital settings. If successful, the project will produce practical, tested interventions that could be rolled out across the NHS and children’s hospices. The result would be fewer families falling through the cracks, better coordination of care, and improved wellbeing for both the children and everyone caring for them.
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Background More than 86,000 children live in England with life-limiting conditions and this is predicted to rise to> 121,000 by 2030. There is higher prevalence of LLCs in children from minoritised ethnic populations and in areas of higher deprivation. Advances in medicine have enabled these children to survive longer but the healthcare system has not advanced at the same rate and these families are often left unsupported. Parents become coordinators and providers of healthcare, 24 hours/day, 7 days/week. Parents report major issues with fragmented care and lack of coordination of care which are difficult to manage as well as concerns over the wellbeing of siblings. Aim To improve access, integration, equity, and quality of healthcare for children with life-limiting conditions by developing, adapting, implementing and evaluating interventions Research questions RQ1 - How can children's hospices be better integrated within the health and care system? RQ2 - Is short term input from specialist paediatric palliative care teams effective and cost-effective for children with life-limiting conditions? RQ3 - Can we improve care and support for parent-carers of children and young people with palliative care needs, through implementing a carer-centred assessment and support intervention (CSNAT-I) which aims to improve their health and wellbeing? RQ4 - How can we improve care and support for siblings of children with a life-limiting or life-threatening condition? Methods This ambitious, mixed methods research plan will be delivered in four work-packages with four cross cutting themes: a. equity, diversity and inclusion, b. methodological development, c. patient and public involvement and d. capacity building. Workpackage 1 Using surveys with hospices (n=54) and qualitative interviews with parents and professionals (n~40), I will assess levels of integration of hospices with the healthcare system. Using experience-based co-design I will identify ways in which this integration can be increased and feasibility test this with two hospices. Workpackage 2 I will undertake workshops with staff and interviews with parents (n`20-30) to gain consensus on the key components of a short-term paediatric palliative care intervention should be i.e. timing, professionals involved and outcomes. I will then test this intervention in two locations to assess if feasibility of implementation. Workpackage 3 I will undertake experience-based co-design workshops with parent-carers and staff to assess if further changes are required to CSNAT-I and develop an implementation strategy. I will then feasibility test this tool in two hospices to assess what changes may be required to progress with a full evaluation using a stepped-wedge cluster randomised design. Workpackage 4 I will update a systematic review of interventions to support siblings of children with life-limiting conditions. I will work with groups (n~4) of siblings (n~30) to assess if these interventions met their needs and adaptations required prior to feasibility testing. Timelines for delivery WS1 0-32 months WS2 12-39 months WS3 18-42 months WS4 24-53 months. Anticipated Impact and Dissemination This outputs of this award will improve the access to, integration of and quality of care for children with life-limiting conditions which should improve their wellbeing, quality of life and death.
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