I had the opportunity to recently visit the Peninsula Cerebra Research Unit (PenCRU), which is based within the Peninsula Medical School, at the University of Exeter in the UK. PenCRU is funded by the charity Cerebra and focuses on Childhood Disability Research. Over the last five years PenCru has evolved the practice of involving families in all stages of their research. This ensures that research is relevant to improving the health and wellbeing of disabled children and their families. It is also worth noting that in the UK it is mandatory to involve patients and members of the public in research when applying for government sponsored funding streams. The aim of my visit to PenCRU was to learn about the practice of involvement and how partnerships were formed between researchers and the local families.
As an early career research fellow working in the area of childhood disability, and having a passion for engaging with families, the concept of involvement was not necessarily something new. Our Program always ensures parents and carers have the opportunity to sit on advisory groups, and that their perspectives are captured within the research design if the research we do concerns them. However, after spending time at PenCRU and talking with the parents that they worked with, the concept of involvement demonstrated a more profound meaning to me.
PenCru have established a Family Faculty, where families (most often, mothers) who have an interest in being involved in research will participate in various activities with researchers. A lot of work was done in the early stages to encourage families to get involved, such as holding forums, websites, newsletters and launch events. To date there is over 200 families in the Family Faculty database. There is no formal structure to this involvement; parents can join in at any stage of the research process whether this is identifying important issues that research needs to address, actually formulating research questions or prioritising those questions for funding applications. Families can assist in the design of research, writing of summaries and grants and also finding sources of funding through support services and charities they know of. Members of the Family Faculty are consulted on all research ideas or queries that come to PenCru to see if there is sufficient interest to explore the topic and shape into a research question that is meaningful to families.
I managed to spend a good amount of time with four of the parents on the Family Faculty who felt empowered in their roles with researchers and that this opportunity enabled them to have a voice and share their life experiences in an informed way. They enjoyed having the choice to be involved in projects that interested them the most and attending meetings when it was convenient for them in their caring role. This really felt like a partnership that worked respectfully and fruitfully for both the parents and the researchers.
My own take away message from PenCRU was to think of involvement as a core research activity and one that is flexible, it is not something that can be allotted a particular research stage. To simply start by communicating widely to families about the work that we do, and to encourage families to share their views will be good starting point.
The Peninsula Cerebra Research Unit is part of the Peninsula Collaboration for Leadership in Applied Health Research and Care (PenCLAHRC). PenCLAHRC is a collaboration of Universities and NHS organisations in the South West of England which aims to deliver high-quality health research that influences medical practice, ensuring that research addresses issues that are relevant to patients and carers and results in beneficial new treatments and services.
Read more at http://www.pencru.org/aboutus/#GCial3kPGMX4JIEc.99
Written by: Kim-Michelle Gilson