The Journey through Care. Palliative Care for children and young people, and their families : What? When? How? A Realist Inquiry

Background: The World Health Organisation defines palliative care as “an approach to care that aims to improve the quality of life for people living facing the problems associated with life-threatening illness, through the prevention and relief of suffering”. The number of children and young people with life-limiting and life-threatening conditions is rising. All could potentially benefit from palliative care, but there are significant inequalities in the provision of such care to children internationally, including the availability of specialist paediatric palliative care services. Research Aims: To examine the delivery of healthcare, including palliative care, for children with life-limiting and life-threatening conditions and their families. The study uses a realist approach to provide understanding into how palliative care is delivered most effectively, and when, leading to policy relevant recommendations. Methods: 1. Development of a programme theory (PT) through systematic and realist literature reviews. 2. 41 serial interviews with 31 participants from 14 families; 10 children with life-limiting or life-threatening conditions and 21 family members. 3. Four focus groups with children’s palliative care professionals. 4. Thematic / realist analysis to describe the hidden mechanisms (M), triggered in certain contexts (C), to produce desired outcomes (O). Context-Mechanism-Outcome configurations (CMOCs) are used to refine and refute the PT. Findings: Children and their families are vulnerable experts, negotiating a healthcare system that can be rigid and fragmented (C). The delivery of palliative care depends on interpersonal relationships with healthcare professionals (C), who are able to bear witness to the child and family situation (M), underpinned by trust and respect (M). Important child and family outcomes include feeling heard and supported (O). In organisations, an environment that values these relationships and legitimises palliative care as an approach (C) through leadership and role modelling (M) as well as the development of specialist services (C), leads to more equitable palliative care (O). Conclusion: The realist approach provides increased understanding and description of important child and family outcomes that underpin policy goals in palliative care, achieved in certain contexts. Future service and commissioning models should propose a whole system approach. Achieving this requires the unwavering commitment of system leaders, recognition of the unique situations of children and families, and individualised palliative care. Service design should place greater emphasis on the need for trusted relationships, should nurture and support professionals who have the motivation and capacity to provide palliative care, and should integrate specialist paediatric palliative care effectively into existing services