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Durham University

Research & business

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Children’s hospice service data mapping project 2011/12

A research project of the Department of Sociology.

Background

There is a recognised need for improved and consistent local and national data about children’s life-limiting conditions and the support provided by children’s hospices and other third sector palliative care services. The 2011/12 children’s hospice service data mapping project aimed to contribute towards this need. This was a national data collection which built on projects conducted in 2009/10 and 2010/11, carried out as a partnership between Durham University Mapping Unit and Together for Short Lives (formerly Children’s Hospices UK). In 2011/12, following the merger of Children’s Hospices UK and The Association for Children’s Palliative Care (ACT) to Together for Short Lives, the data collection also included a feasibility study with invited other third sector children’s palliative care providers, providing similar services to children’s hospices. The project was advised by the National Children’s Palliative Care Data Forum. 

Aims

The project aimed to contribute to the establishment of a systematic approach to collecting and presenting information about children’s hospice services and other third sector palliative care provision in the UK. This included information about:

  • What services were provided, where and by whom
  • Who benefitted from the services
  • Which key policy imperatives were being delivered.

The project also aimed to develop ways in which the information collected could be presented in visual and accessible formats, including online maps and tables.

Methods

The method of data collection was an online service level questionnaire completed by service providers. The questionnaire included questions about the:

  • location of the service and how it could be accessed
  • types and features of the service provided
  • children, young people and families supported by the service
  • types and numbers of direct care staff working in the services.

Outputs

The outputs included:

  • A national data report presents a profile of children’s hospice services comparable information from the 2010/11 and 2011/12 data collections and summary of the feasibility study.  Final Report
  • Online maps, data tables and visual presentations of key elements of the data collected. Further information is available at Children's Hospice Service Mapping 

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