How can policy become reality in children’s palliative care? A realist inquiry
Primary palliative care for patients of all ages has been highlighted internationally through the inclusion of palliative care in the 2018 Astana WHO and UNICEF Declaration on Primary Health Care. The numbers of children living with life-limiting and life-threatening conditions is rising rapidly. There are significant inequalities in the provision of palliative care to children, through variability in both specialist paediatric palliative care services (SPPC) and the level of involvement of the GP and primary care team.
Aims: 1. To examine the delivery of palliative care for children as a broad approach to care, taking a realist approach, to understand how palliative care is delivered most effectively, to which children and families and in what circumstances. 2. To propose policy-relevant recommendations.Methods:1. Development of an initial programme theory (PT) using existing policy, followed by systematic and realist literature reviews to further refine the PT. 2. Serial interviews with children with life-limiting or life-threatening conditions and their family members, and focus groups with healthcare professionals involved in the delivery of palliative care to children. 3. Thematic analysis followed by the application of a realist logic to describe the hidden mechanisms (M) which are triggered in certain contexts (C) in order to produce desired outcomes (O). CMO configurations are described and used to further refine the PT.
Forty-one interviews were conducted with ten children from 14 families, and 21 family members between October 2016 and November 2017. Four focus groups were conducted with 71 professionals at four paediatric palliative care network meetings in the UK from December 2017 to June 2018.At an interpersonal level, the delivery of palliative care depends on relationships with healthcare professionals (context), underpinned by trust, respect, advocacy, shared emotional investment and an ability amongst healthcare professionals to bear witness to the child and family situation (mechanisms), which lead to important child and family outcomes including a feeling of being heard and supported. At an organisational level, a healthcare environment which values continuity and legitimises palliative care (contexts) through leadership and role modelling (mechanisms) lead to a shift in culture towards improved and more equitable palliative care (outcome).
The child and family outcomes described are important if policy goals in palliative care are to be achieved. SPPC services lack capacity to care for all of the children who could benefit from palliative care. Generalist physicians, including GPs, share many of the professional values that lead to a palliative care approach. Future service and commissioning models which place emphasis on enabling the contexts across the healthcare system in which hidden mechanisms are triggered in order to produce the outcomes considered most important to children and families will underpin and assist the translation of policy into practice.