The collaborative UK wide paediatric palliative care research network (CoPPAR)
Why is this study needed?
There are a growing number of children living with medical conditions that will threaten or shorten their lives and around 4500 babies, children and teenagers in the UK will require end of life care each year. There are increasing numbers of specialist palliative care services and children’s hospices in the UK, but there is little research evidence to tell us how care for these children and families should be delivered, for example how to manage distressing symptoms. Undertaking research in palliative care settings is challenging because the numbers of children and young people at any one site or with any one condition are relatively small, and many of the services are voluntary rather than NHS funded so do not have dedicated research departments.
What are we aiming to achieve?
We are aiming to develop a network of academics, clinical teams (e.g. children’s hospices or NHS palliative care teams) that will work together to share experiences and expertise to improve their confidence in undertaking and participating in research studies – the CoPPAR network. This network will be a single point of information, held on the Together for Short Lives website (national charity for PPC), and accessible to parents, clinicians and academics to find out about current and new research studies and how to get involved.
How will we achieve this?
We will work with the seven partner organisations to understand what educational needs they have and will run a series of webinars to share experiences of undertaking research in voluntary sector and NHS settings e.g. how to involve children and parents in research studies. These webinars will be accessible for all 63 children’s palliative care services in the UK. The academics will also provide mentorship to any clinical staff who would like to have formal research training.
We will also work with these partners to develop applications for future research studies that are driven by their experience and needs as front-line staff and with input from our PPI partners. These grants are likely to be on topics such as collecting child centred outcomes and management of distressing symptoms in palliative and end of life care in children.
Patient and public involvement
This application addresses a request from the Family Advisory Board of the Martin House Research Centre – this group has approx. 15 parents of children with life-limiting or life-threatening conditions or whose child has died. The parents were very keen to have a mechanism by which more parents can get involved in PPI but also that there was a mechanism by which they could easily find out about/get involved with studies going on in other research groups. We will build on the existing PPI groups (Family Advisory Board and Young Persons Group) and extend our membership to increase diversity and reach.
We will work with parents, professional organisations and charities to inform them about the CoPPAR network and opportunities for them to get involved.
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