Engagement and involvement of children and young people and families as experts by experience.
At the heart of all of our projects is that we use creative methods to give power and scale to MMU strengths in qualitative insights and public, patient involvement and engagement (PPIE) to guide data modelling decisions and co-design research questions and tools to meaningfully translate from frontline health professionals and community partners to large population-level estimation of health benefits.
Examples:
ENGAGE fund project (PPIE): School attendance problems and family mental health
This PPEI project is funded by the public engagement team at Manchester Met. It will explore parents’ and carers’ experiences of school attendance difficulties and the impact these can have on family wellbeing. We are particularly interested in understanding what kinds of support families need and how these experiences can be represented and shared in meaningful ways. The project is led by Dr Julia Wolska-Lamey, with co-investigators Dr Jen McGahan and Dr Claire Agius.
We will be holding an online session via Microsoft Teams, during which we will discuss the project aims and the proposed activity with participants. This will include information about where a further face-to-face session will take place (Brooks Building and the CAVE). This session will allow participants to suggest any changes to our proposed project plan and ask any questions. If attendees at this first online session decide to take part in the project, they will be invited to a second in-person session in the CAVE. This will be transformed into a classroom. During the session, participants will be invited to share their lived experience of their child’s school attendance problems with the research team and with other parents and carers taking part. Group discussions will be audio-recorded. To capture responses from the whole group, the CAVE walls will be used as ‘live’ interactive spaces where thoughts, feelings and responses to discussion points can be shared. These responses can be submitted via mobile phones.
Participants may choose to contribute in a variety of ways that feel most comfortable to them. This may include:
- adding responses to the interactive walls
- writing on Post-it notes
- sharing thoughts verbally (individually or within the group)
- submitting a voice note
- drawing or labelling a representation of their experience
They will then be invited to use magazines, newspapers and craft materials to create a collage in response to the question “What support did/does your family need to support your child attending school?” They may then choose to talk through their collages, either with the group or individually, depending on what feels most comfortable. At the end of the workshop activity, they will be invited to bring the collages together to create a shared piece, representing both collective experiences and individual needs.
It is anticipated that the project will feed into a larger funding bid.
ENGAGE Fund: The intergenerational Impact of Endometriosis
Funded by Manchester Met’s ENGAGE fund, we are hosting a series of discussion groups with parents with endometriosis. Research around parents with endometriosis and the impact it has on their children is limited, and although drawing from evidence from chronic pain conditions more broadly can give us insights into how this may affect people with endometriosis, we need to ensure that those with lived experience have a say in what we research. We are particularly interested in how endometriosis symptoms impact the way they parent, how they interact with their children and its impact on their and their child’s mental health. This project is a collaboration between Megan Chambers, Dr Jasmine Hearn, Dr Julia Wolska-Lamey and Professor Rebecca Pearson.
We will be holding 3 discussion groups. In the first, parents will co-produce a Directed Acyclic Graph (DAG) to map the impact of endometriosis on parenting and child mental health outcomes using their personal experiences. This will directly influence the statistical analysis of the project. During the second, we will present the results of this analysis and gather feedback on the interpretation of the results. Finally, an in-person workshop will be held, where we will co-produce a dissemination plan and start developing the next phase of our study.
Group members will be active decision-makers who shape the research priorities of a PhD project, as well as learn about novel and state-of-the-art longitudinal cohort research and analysis. There is also the potential for co-production of the outputs of this project, for example, academic papers, conference abstracts and the development of resources to support parents with endometriosis.