Evaluation of Home-Based End of Life Care Service for Children and Families

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A key principle of children’s palliative and end of life (EOL) care is to provide care in the family’s preferred setting, including home, hospice or hospital.  Increasing evidence suggests that families wish to remain at home towards their child’s EOL.

A recent scoping review revealed few published studies on models of home-based EOL care for children.  In response to this paucity of evidence, Malcolm and Knighting (2022) undertook a realist evaluation to address the question, “What are the components of home-based EOL care services that work, for whom, how, in what circumstances and why?”

This study evaluated Care 24 Lothian, a service involving NHS Lothian, an acute care hospital and community service, and Children’s Hospices Across Scotland, a children’s hospice, which work together to deliver EOL care and support to children and families in their home.

An initial program theory, including five components describing how and why the service works to deliver effective home-based EOL care, was developed through a scoping review, document review, audit of service data and stakeholders and family interviews:

  1. Anticipatory approach to care planning and delivery – “If the Care 24 Lothian service adopts an anticipatory approach to the care of children and families (Context), then the service is able to plan and deliver the majority of care during regular working hours (08:00-18:00) (Mechanism) thus reducing the need for access to out of hours care by families (Outcome)”.
  2. Advance care planning – “When advance care planning that supports families’ choices and goals for quality palliative and EOL care (Context) underpins the service provided by the Care 24 Lothian team and is prioritised within the care delivered (Mechanism), this can lead to delivery of effective and person-centred EOL care for the child and family (Outcome)
  3. Service responsiveness and flexibility – “Access to care in different settings (home, hospice, hospital) and supporting families to move between settings according to their fluctuating needs at that time (Context), by the service responding in a flexible and need-driven way (Mechanism), will provide families with choice over their preferred place of EOL care and they will be supported to remain there as long as they wish (Outcome).”
  4. 24/7 availability of nurse-led care with medical input as required – “Care 24 Lothian is a 24/7 nurse-led service providing homebased EOL care to children and families (Context). It is delivered by nurses with appropriate knowledge and expertise in children’s palliative care and supported by 24-h access to expert medical care (Mechanism). This approach leads to the provision of consistent, high quality care and support to children and families (Outcome).”
  5. Partnership working – “An integrated service where NHS Lothian and CHAS work in partnership to deliver home-based care for children and families (Context) requires effective communication, leadership and adoption of joint policies, procedures and documentation (Mechanism) to ensure the provision of consistent, high quality care and support to families (Outcome) and to enhance team working (Outcome).”

The theory was then tested through case studies involving 3 families receiving EOL services through Care 24 Lothian as well as interviews with professionals involved in their delivering care.  Several additional mechanisms, describing how and why the service works, as well as additional outcomes were identified through the case studies.

The findings of this study helped to highlight components of the service that lead to success as well as identify opportunities for improvement.  The program theory also provides a structure to guide service development in other regions, to help achieve high quality EOL care in the family’s preferred setting.

  • Malcolm, C., & Knighting, K. (2022). A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why?. BMC Palliative Care21(1), 1-17.  Available from: https://link.springer.com/article/10.1186/s12904-022-00921-8