Title: Palliative Care for Children and Young People with Life-Limiting Conditions: What? When? How?
Funder: Department of Health and Social Care

Abstract: Background Current definitions of palliative care for CYP are broad and non-specific, which provides practical challenges for patients and families, the healthcare professionals caring for them, and those responsible for commissioning services. Palliative care services for CYP around the UK differ between regions, with multiple statutory and voluntary providers involved. The future development of high quality, standardised palliative care services which serve CYP with life-limiting illness and their families, presents a huge challenge for the NHS. Research Questions How do current definitions of palliative care services for CYP concord with service delivery, policy and guidance in the UK? What is the current evidence base for practice and policy related to palliative care service delivery for CYP? What are the experiences and preferences of CYP, and/or their relatives or carers, in relation to the delivery of palliative care services? What are the facilitators and barriers to the delivery of palliative care for CYP, and how might these be overcome? What should an integrated model of palliative care for CYP look like? Objectives To systematically appraise existing policy and guidance and published evidence related to palliative care service delivery for Children and Young People (CYP) with life-limiting illness. To explore and identify common themes around the experiences and preferences of key stakeholders regarding palliative care service design and delivery for CYP with life-limiting conditions, including the perceived facilitators and barriers to these services. Key stakeholders will include (i) CYP with life-limiting conditions, (ii) their relatives or carers, (iii) professionals and (iv) service commissioners. To collate this evidence and use it to inform the design and development of an integrated model of palliative care for CYP with life-limiting conditions, which will inform commissioning and the development of national policy, as well as future research. Design Systematic review of published guidance and policy, and published evidence, related to palliative care service design and delivery for CYP with life-limiting conditions. Qualitative interview study with CYP with life-limiting conditions, their carers, relevant health and social care professionals, and commissioners of services. Development of a new model of care in consultation with local experts, including service users and commissioners, which will be of immediate relevance and practical use in the development and design of sustainable services. Outcomes Published systematic reviews of (i) published guidance and policy and (ii) published evidence related to palliative care service design and delivery for CYP with life-limiting conditions. A comprehensive multi-perspective analysis and metasynthesis of stakeholder experience and expectations of palliative care services for CYP, including the facilitators and barriers to delivering these services. A proposal for a new model of integrated palliative care for CYP with life-limiting conditions, to inform local commissioning and national policy. Benefits Palliative care and care planning in partnership with patients and families allows identification of preferences, better outcomes for families, and can avoid costly hospital admissions. CYP with life-limiting conditions, many of which are highly complex, represent an important population for consideration by the NHS. This in-depth investigation in to the design and delivery of palliative care services for CYP and development of a practical model of care will ultimately provide benefit for patients requiring those services, and their families. The outcomes will contribute to the improvement of integrated care, are highly relevant to the NHS, social care and third sector providers of palliative care for CYP in community, secondary and tertiary care settings.

Lay abstract: The study is an in-depth qualitative investigation into palliative care service design and delivery for children and young people (CYP) with life-limiting conditions. Experiences and expectations of palliative care services, including facilitators and barriers to their design and delivery will be investigated from the perspective of key stakeholders, including CYP with life-limiting conditions, their relatives or carers, relevant professionals in health and social care, and service commissioners. Evidence will inform the design and development of an integrated model of palliative care for CYP with life-limiting conditions, which is intended to inform future commissioning, national policy and future research.

Research activity codes: 7.2 END OF LIFE CARE;8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES)
Health categories: GENERIC HEALTH RELEVANCE