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The Big Study for Life-limited Children and their Families – Final research report

The initial idea for the Big Study came about at least five years ago at a Board meeting. We were discussing how far children’s palliative care had come since its early days and yet how little we really knew about whether children’s palliative care services were meeting the needs of children and families. We wanted to know what was missing from the jigsaw and which needs were well met. I would like to give especial thanks to Dr Anne Hunt for working with the team at Together for Short Lives to develop the initial proposal and without whose vision the project would not have been possible. The idea for a major research study to be based in the West Midlands took hold and we approached a number of key researchers in the field as collaborators, developed the proposal, and were delighted that funding was awarded from the Big Lottery Fund to bring the idea to fruition.

The Big Study has been a complex study with many partners through its two year duration. Those involved in such studies will know that research with families of children with life-limiting and life-threatening conditions is difficult and that research ethics governance procedures make it difficult to access and work with families within NHS sites. Despite these complexities and thanks to the expertise of our research partners and the skills of our project manager, Julia Hodgson, the Big Study has delivered its findings and we were able to work with 1180 families across the West Midlands region. We really are indebted to those families who took part and to the many professionals and services who worked alongside us to provide such rich data.

It was encouraging to learn that some services such as children’s hospices and community children’s nursing teams (where they are well resourced) are highly praised. On the whole it seems that families feel that the medical and nursing needs of their children are relatively well met, but it is the provision of broader financial, social, emotional and short break support for families which is falling short, alongside the need for more responsive physiotherapy and occupational therapy. As with many other studies, the issue It’s a huge privilege to be able to present this final report of the Big Study for Life-limited Children and their Families (the Big Study).
of poor communication and co-ordination between services was also highlighted. While it was found that the children’s palliative care network provides a huge benefit in terms of professional collaboration and sharing of best practice, the network is not yet perceived by families to be delivering better, joined up services.

The economic analysis of the data has shown that while the trend towards more home-based care is what most families want, it does place a huge caring and financial burden on families. The need for short breaks and support for parents, carers and siblings must be provided to balance the needs of families who are taking on complex caring roles.

The Big Study has raised many questions for the future and highlighted further research that is needed. Together  for Short Lives will be using the findings of this research to inform its future activities and campaigns, and plans to continue to work on developing projects to answer some of the research questions that have been raised. Our commitment to working in partnership with children, young people and families remains strong and we look forward to working with some of the families from the Big Study in our future work.