A child and adult's hands holding paper cutouts of different family members

Big Study for Life-limited Children and their Families: Study of West Midlands palliative care needs of children, young people and families


Big Lottery Fund

Total value of project


Project team

Professor Jane Coad (PI), Erica Brown, Nicky Thomas (nee Ashley), Jasveer Kaur, Dr Christopher Owens


Association for Children's Palliative Care (ACT), Together for Short Lives (TfSL)


University of Central Lancashire, University of Greenwich, University of York, University of Warwick

Duration of project

2011 - 2013

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Project overview

The BIG Study was seeking to explore how well the needs of life-limited children were being met in the West Midlands – as an example of a region with a variety of providers, strong professional networks and a diverse population.

The BIG Study was a two year project undertaken with five university partners, funded by the Big Lottery Fund Research Programme.

This was the first in-depth study in the UK of how well the needs of children with life-limiting conditions and their families are being met. It is hoped that methods developed in this study will have applicability to future studies in other parts of the United Kingdom.

Methods were informed through consultation with professionals and children and their families in the West Midlands during a development phase of the project which took place prior to the start of the main research project.

Project objectives

  • Strand 1 - Understanding the demographic and geographical distribution of children with life-limiting conditions and their families, University of Central Lancashire.
  • Strand 2 - Qualitative analysis of families’ met and unmet needs, Coventry University.
  • Strand 3 - A study of a professional network: Coordination, cooperation and collaboration across the West Midlands Paediatric Palliative Care Network, University of Greenwich.
  • An economic evaluation of service delivery, York Health Economics Consortium.
  • User involvement in the Big Study, University of Warwick supported by Coventry University.
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