Research Output

What are the components of an effective model of home-based end of life care for children and families?

  Objectives: To assess the effectiveness of a home-based end of life care service delivered via a partnership model by two organisations as perceived by families who have accessed the service and professionals delivering the service.

Methods: A realist evaluation approach was adopted, consisting of three phases. In phase one, the initial programme theory underpinning the service was developed through a scoping review, document analysis and interviews with service developers and managers. The programme theory was then tested in phase two through in-depth case studies involving interviews with families and professionals. In phase three, the programme theory was refined through analysis, interpretation and synthesis of the data utilising a thematic framework approach.

Results: Thirteen bereaved parents and two adult relatives of 10 children who were supported by the service and 25 professionals, including community nurses, children’s hospice nurses, primary care physicians, paediatric consultants and paediatric palliative care consultants, responsible for delivering the service participated in the evaluation. From the perspective of families, the service worked effectively enabling them to remain at home for their child’s end of life care and after death and was characterised as providing compassionate, holistic, child and family centred care. Five core components of the service included: adopting an anticipatory approach to care planning and delivery; advance care planning (ACP); service responsiveness and flexibility; a nurse-led service providing 24/7 care and access to medical support; and partnership working.

Conclusions: With a growing drive to facilitate choice with respect to where end of life care is provided, there is a requirement for innovative models of care and services that are able to provide effective care and support to families. The findings from this project make a much needed contribution to the evidence base surrounding home-based end of life care for children and outline key components to be considered when developing future models of care.

  • Type:

    Conference Paper (unpublished)

  • Date:

    13 October 2020

  • Publication Status:


  • Funders:

    Children's Hospice Association Scotland; NHS Lothian


Malcolm, C., & Knighting, K. (2020, October). What are the components of an effective model of home-based end of life care for children and families?. Paper presented at 2020 International Congress on Palliative Care, Montreal, Canada


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