The Martin House Research Centre conducts research on the care and support of children and young people with life-limiting conditions and/or medical complexity, their families and the services who support them. The aim is that the Centre’s work will lead to improvements and developments in the provision of care and support for children and young people and their families.
It is important that our research is informed by children and young people, their families and others who support them. To do this, we work in partnership with young people, parents, other family members and relevant organisations to enhance the quality, relevance and impact of the research we do.
Young people and families of children with life-limiting and life-threatening conditions have been actively involved in the Research Centre since its launch event in January 2017. Olivia, a young lady with a life-limiting condition (pictured below with Dr Jan Aldridge), and Kirsty and Chris whose baby son Joshua had recently died, shared their experiences and insights for future research to an audience of clinical, research and third sector children’s palliative representatives from across the UK. Their central role in this event highlighted the importance of underpinning research by the perspectives and experiences of children, young people and their families.
Young people and parents were also involved in the Research Priorities Project carried out when the Centre started in 2017 (see picture below taken at a project workshop). The purpose of this project was to identify topics which families and professionals believe the Centre should prioritise for research (download project report (PDF , 1,114kb)). A number of these topics are now being addressed by the Centre, and we regularly review the work of the Centre against the priority areas identified.
In 2018 we established the Family Advisory Board (FAB), pictured at the top, which includes parents and other adult family members of children and young people with life-limiting conditions and complex healthcare needs, and who will advise on the development and co-ordination of Public Involvement for the Centre, and provide input on the Centre’s research. FAB currently has 15 members and meets three times each year provides input at other times when needed.
We are always looking for new members for FAB to ensure that different perspectives and experiences inform our research. You don’t have to attend the FAB meetings or live in Yorkshire to get involved, and you don’t have to be listed on our website or to have your name shared with others if you become a member.
In 2019 we also embarked on co-designing a public engagement project with teenagers and young adults with life-limiting conditions as a way to involve them in the Centre’s research but in a way that is meaningful to them. More information about this will be added to the website in due course.
Download the Centre's Public Involvement and Engagement Strategy to learn more about our plans:-
If you would like to get involved in the Centre’s research or would like further infromation about our approach to public involvement please contact Jo Taylor (the MHRC Public Involvement Lead) at firstname.lastname@example.org or on 01904 328083.