We are pleased to launch the final report from our Big Study project. This complements the Summary and the Full Findings reports which were published last year. All these reports can now be accessed from our Big Study project hub.
The Big Study was a two year project undertaken with five university partners, funded by the Big Lottery Fund Research Programme. The 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.
There were many rich findings from the Study to underpin our understanding of children’s palliative care. For example, 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.
However there were felt to be shortfalls in the provision of broader financial, social, emotional and short break support for families, alongside the need for more responsive physiotherapy and occupational therapy. As with many other studies, the issue of communication and co-ordination between services was also highlighted as an area for improvement.
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 parent/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 campaigning and other activity and plans to continue to work on developing future projects to answer some of the research questions that have been raised.
I hope you enjoy reading this latest publication from Together for Short Lives and do let us know if you have any feedback or comments.
Download the resource for free here.