Funder: Big Lottery Total bid £499,320. £85,030 to RCN RI.

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, led by Sophie Staniszewska.

Progress: The study is now complete and the final report has been written and submitted. Papers from study are in progress.

Publications:

Hunt S, Staniszewska S et al (2013). Why does it happen like this?” Consulting with users and providers prior to an evaluation of services for children with life-limiting conditions and their families. Journal of Child Health Care, in press.