Our research brings together a diverse range of families, professionals, academics and charities to advance clinical practice, education and policy.
Our studies mainly focus on advance care planning for babies, children and young people who have life-threatening or life-limiting conditions. These are formal plans that set out agreed actions for a range of scenarios (e.g. deteriorating health, emergencies, end of life) and are recommended in national policy as a key mechanism to drive up standards in care. Our findings are producing new evidence about what families want from advance care plans and the factors that influence implementation and outcomes.
A key feature of our research is the use of co-production models of involvement, where families and other stakeholders advise on all aspects of the studies and share decision-making. We also use qualitative and mixed methods that facilitate the user voice to be heard (e.g. interviews, focus groups, national surveys), including art and other creative media to promote involvement and understanding.
We also have a strong commitment to knowledge transfer and work closely with key policy makers, professional networks and parent groups to rapidly translate our findings into improved policy, education and practice.