Edinburgh Napier University

  Background: Children’s palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family’s preferred place, which may include home, hospital or hospice. Limited evidence on models of best practice for the provision of children’s end of life care at home is available. This realist evaluation of a novel, home-based end of life care service explored what works for whom, how, in what circumstances and why.
Methods: Adopting principles of realist evaluation, an initial programme theory (IPT) was developed from multiple data sources including a scoping review, service documentation review, audit of service data, and qualitative data gathered from stakeholder (n=6) and family interviews (n=10). Three families who had used the service were identified as case studies and interviews with professionals involved in their care (n=20) were conducted to test the IPT. The findings informed the revised CMOs illustrating the contexts and mechanisms which underpin how and why the service works and for whom.
Results: CMO configurations were identified explaining how and why the service works for families across five core components: anticipatory approach to care planning and delivery, advance care planning, service responsiveness and flexibility, 24/7 nurse-led service with 24-hour medical support, and partnership working. Key mechanisms include establishing trusting relationships, building skills and parent confidence to deliver care, early advance care planning discussions with clear documentation, providing a single point of contact for families, workforce planning and resources to deliver the service as intended, effective communication and leadership within and between providers of the service, and use of joint policies and procedures. Recommendations for future development and expansion of the service are also discussed.
Conclusions: The findings highlight core components making this service a success and areas of challenge which continue to be addressed as the service develops. With increasing demand for home-based end of life care for children these components provide a structure which can help to guide service development to meet the needs of these families in other regions to ensure that children and families receive good quality care in their place of choice.