There are currently 17 consultant led paediatric palliative care services and 54 hospices in the UK, each providing care to children, young people, and their families. To support these organisations to deliver effective, efficient and safe care, it is vital that the evidence base in paediatric palliative care is strengthened. Doing so relies on collaboration and partnership between those delivering care, and those with skills to deliver research.
The Collaborative Paediatric Palliative Care Research (CoPPAR) network was established in Jan 22, funded by the National Institute for Health Research, as part of a call to improve the quality of applications for funding into palliative and end of life care research. Formed of seven partners, including five hospices and two NHS services throughout the UK, the network aimed to bring together academics and paediatric palliative care clinical teams to share experiences and expertise to improve confidence in undertaking and participating in research studies. To achieve this, the network had six key objectives, some of which were aligned to developing resources to support participation in research in the sector.
One such resource is named the ‘CoPPAR toolkit’. Hosted on the Together for Short Lives website, the toolkit provides users with several resources to support engagement in research. Each resource has been developed through consultation with family advisory boards and staff networks, ensuring they are suitable and relatable to their desired audience. Resources include information on research and its value, tips and resources on pursuing a career in clinical research, support towards developing a research funding application, advice on how to set up an organisation as a research site, and supporting young people, parents and families to become involved in research.
Each resource is designed to provide you with the most relevant information, whilst also signposting and directing you to existing materials and guidance. For example, clicking on the ‘pursuing a career in clinical research’ resource will take you to a landing page with a useful webinar on different career pathways into research, as well as useful links and descriptions to the various funding streams and pathways available.
To access the toolkit please visit https://www.togetherforshortlives.org.uk/changing-lives/supporting-care-professionals/research/the-coppar-toolkit/
Educational webinars are available here.
Contact – lorna.fraser@kcl.ac.uk
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