Research Output

Providing home-based end of life care for children and their families: a realist evaluation of the Care 24 Lothian service

  Background - The drive to ensure end of life care and death occurs in a child and families’ preferred setting, be that home, hospice or hospital, has been set by policy makers across the United Kingdom (UK) (Department of Health 2016; National Palliative and End of Life Care Partnership 2015; Scottish Government 2012) and echoed by Together for Short Lives, the national children’s palliative care charity (2015; 2013). In order to deliver on this ambition, appropriate services need to be in place to deliver effective end of life care including access to specialist nursing and medical care and support 24 hours a day and seven days a week (NICE 2017; Together for Short Lives 2013). Few services providing 24/7 access to support within a child’s home at the end of life exist within the UK. Within Scotland, NHS Lothian and Children’s Hospices Across Scotland (CHAS) set out to address the gap in home-based end of life care services by developing a bespoke model of care that supports families to access specialist palliative and end of life care in their home if that is their wish.

Aim – Employing a realist approach, the evaluation set out to address the following question: ‘What are the features of the Care 24 Lothian service that work, for whom, and under what circumstances?’

Methods – The evaluation was conducted in three phases. The first phase involved developing the initial programme theory through a scoping review, document analysis and interviews with programme developers and managers. The programme theory was then tested in phase two through in-depth case studies involving interviews with families who accessed the service and professionals delivering the service. In phase three, the programme theory was refined through analysis, interpretation and synthesis of the data.

Findings – The service ‘worked’ effectively for families and enabled them to remain in their preferred setting for their child’s end of life and after death. Families found particular value in the how the service ensured care was led by the child and family’s wishes and how it allowed and encouraged them to be ‘parents’ at the end of life. Another facilitating mechanism which led to the outcome of effective end of life care included the specialist knowledge and experience of nurses providing care and the 24/7 access to specialist nursing and medical support. This yielded families’ confidence and trust in the service and in being at home at this point in their child’s journey.

Conclusion –With the requirement to provide children and families with access to 24/7 end of life care and support in the home, the demand for services like Care 24 Lothian across the UK will increase. This evaluation contributes to the evidence base surrounding home-based end of life care and assesses the effectiveness of the service from the perspectives of both families and professionals.

  • Type:

    Conference Paper (unpublished)

  • Date:

    25 March 2020

  • Publication Status:

    Unpublished

  • Funders:

    Children's Hospice Association Scotland; NHS Lothian

Citation

Malcolm, C., & Knighting, K. (2020, March). Providing home-based end of life care for children and their families: a realist evaluation of the Care 24 Lothian service. Paper presented at Together for Short Lives - Conference 2020: Time for Change?, Manchester, UK

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