Funder: Big Lottery

Start date: September 2010. End date: September 2012.

Grant holder: ACT

Collaborators: Ann Hunt (Lancaster), Sophie Staniszewska (Warwick), Jane Coad (Coventry), Liz West (Greenwich), Nick Hex (York)

Description: The Big Study for Life-limited Children and their Families (The Big Study) is a research project, based in the West Midlands. Funded by Big Lottery Fund, this is the first in-depth study in the UK to examine how well the needs of children with life-limiting conditions and their families are being met.

The study will determine and map those services that are currently used by children with life-limiting and life-threatening conditions, identify and document children’s and families’ needs, and explore gaps in service provision and the accessibility of services to those who need them. It has a strong user involvement dimension, working with parents and young people in developing our understanding of acceptable, appropriate and effective services.

Progress: Work in all five strands (led by each university) is now underway. Sophie Staniszewska is leading on the user involvement strand – focusing on exploring and evaluating the difference users make to the research study. Lee Gunn was appointed as Research Fellow on the study and is developing user involvement within each strand. Overall, the study is progressing well. The first paper from the study has been submitted. ACT have now merged with another organisation to become Children’s Hospices UK.