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Integrating palliative care into the community: the role of hospices and schools
  1. Sally Paul1,2,
  2. Viviene E Cree3 and
  3. Scott A Murray2
  1. 1University of Strathclyde, Glasgow, UK
  2. 2Primary Palliative Care Research Group, Usher Institute of Population Health Sciences and Informatics, The University of Edinburgh, Medical School, Edinburgh, UK
  3. 3Department of Social Work, School of Social and Political Science, The University of Edinburgh, Edinburgh, UK
  1. Correspondence to Dr Sally Paul, University of Strathclyde, Lord Hope Building, 141 St James Road, Glasgow G4 0LT, UK; sally.paul{at}strath.ac.uk

Abstract

Objectives Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public health approaches to palliative care offer a different way forward by seeking to develop communities that support death and bereavement. Such approaches are now a priority for the majority of hospices in the UK and work with schools has been identified as a key area of work. Practice that engages schools and children on issues concerning end-of-life care is, however, underdeveloped and underdocumented. This research explored the role of hospices in working with schools to promote education and support around end-of-life and bereavement experiences.

Methods Action research was used to explore the potential for hospices to work with schools and engage participants in change processes. The research was conducted in 1 hospice and 2 primary schools in Scotland. Participants included children, parents and school and hospice staff.

Results Seven innovations were identified that were found to be useful for the school curriculum and the relationship between hospices, school communities and wider society. A model for integrated practice between hospices and schools is suggested.

Conclusions This research adds to knowledge about how hospices might engage in community engagement activities that encourage school staff to develop greater openness and support around end-of-life and bereavement care for their children. This will require a rethinking of normal hospice services to also participate in community capacity building.

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  • Received 18 December 2015.
  • Revision received 17 May 2016.
  • Accepted 25 July 2016.
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