The MWAY ‘bridging phase’: what was it like for our young stakeholders?

We just reached the end of our ‘bridging phase’ – an exciting milestone for the MWAY project! This phase was part of our participatory approach, where we work alongside autistic young people and adults to help shape the research questions for the project. 

In the previous phase, we interviewed autistic young people and their parents to better understand how social and environmental factors can affect mental health for autistic young people. Then, in the bridging phase, we held a series of meetings to discuss the emerging themes from the interviews and, in a collaborative process, turn them into research questions that we will explore in the next phase of the study. The meetings were held with ‘working groups’ that consisted of members of our Adult Stakeholder Advisory Panel (ASAP) and Young Persons Advisory Group (YPAG). We set up three working groups, each focusing on a different topic: school, peer relationships, and family relationships.

 

The bridging phase was a new experience for many of us – researchers and advisory group members alike. We spoke to two YPAG members, Sam and Lily (both 17 years old), about their experience of being part of the bridging phase. 

Sharing their expertise

Both Sam and Lily felt they had important lived experience and knowledge that they could bring to the working groups. They were pleased to be able to engage in focused work on topics that interested them and that were relevant to their experience. Lily felt passionately about the school environment in particular, ‘I chose to be a part of the school working group as being an autistic individual who is autistic and suffers from mental health illnesses, school has been a massive challenge for me and I have suffered a lot with attendance, social skills, friendships and finding the right setting for me. This has made me passionate on understanding and learning how other people similar to me have coped in the school environment and have dealt with the expectations the school environment has’. Similarly, Sam appreciated being able to bring his knowledge and experience to the family relationships working group, ‘I chose to become a part of the family working group because I felt like my personal experiences would allow me to give greater insight into the topic than if I was in one of the other groups.’. 

Lily and Sam were pleased that lending their expertise could ultimately help others, ‘It has been nice to know that through the study my experiences could help other families with neurodivergent children have a better understanding of what is needed to support their children.’ (Sam)

Feeling heard and valued

Both Lily and Sam appreciated the opportunity to express their views and to have those views heard by others. They felt that the bridging phase process allowed them to have input into research that mattered to them and to have their input recognised as valuable by the other working group members in a supportive environment, ‘I enjoyed the fact that my opinions were heard and validated by the other members of the group and they felt like my input was valuable and worthwhile.’

For Lily, the bridging phase provided an opportunity to build her communication skills and gain confidence in expressing herself, ‘I also gained confidence in speaking to others and expressing my feelings and views.’

Learning from and relating to others

Sam and Lily especially enjoyed that the collaborative nature of the bridging phase allowed them to learn from and relate to others. For Sam, learning about others’ experiences was a highlight of the process and helped him to feel connected to others with similar experiences, ‘I felt like meeting other people who had been in similar situations to me made me feel as less of an outlier, the fact that others with similar conditions struggled with similar things helped me work through some things about myself and my experience as someone on the spectrum.’ Similarly, Lily says, ‘I got to relate to others, and understand what their opinions and experiences are with the school system’.

The bridging phase working groups involved focused discussions on a particular topic. Lily particularly enjoyed this aspect of the process and how it facilitated her understanding, ‘What I didn’t expect but really liked was how in depth we went in each discussion which I thought was good and important to do so we can get a better understanding of others’ views.’ For Lily, the mixed adult/young person demographic of the groups was an advantage as she enjoyed working with ‘people with different age ranges and experiences’.

As well as learning about other group members’ experiences, Lily and Sam learnt more about the process of research including its limitations. Throughout the bridging phase, the research team made efforts to be transparent about what could and could not be achieved within the bounds of the project. During the first meeting of each working group, the researchers gave an overview of the datasets the study will be using. Sam was particularly surprised to learn that our analyses would be drawing on studies that began collecting data in the 1990s and early 2000s (ALSPAC and MCS), noting the limitations of a lack of contemporary data, ‘I was surprised that the most recent data on neurodivergent youth was from around ten years ago.’. This led to a discussion among the working group of the pros and cons of using national cohort data, and reminded us as researchers to be mindful of the limitations of the data.

Overall, both Lily and Sam enjoyed their experience of being part of a bridging phase working group, ‘I’d like to say thank you to everyone who was involved in the working group. I really enjoyed the discussions and the experience that I had the opportunity to be involved in.’ (Lily)

Reflections from the Research Team

As researchers, our usual formula for coming up with a research question would be to study the literature, identify gaps in knowledge, and think of a hypothesis. Therefore, the approach we took in this bridging phase was certainly unconventional, and a new experience for all of us.

The working group discussions were rich, insightful, and constructive. It was incredibly valuable to have the insights of those with lived experience guiding the process. Our ASAP and YPAG members did a fantastic job of challenging some of the assumptions we often make as researchers – including things we tend to see as standard practice. For example, the working group members highlighted important ways that commonly used measures may be less appropriate for autistic people. Crucially, the research questions we ended up with were different from ones we might have come up with on our own, which really highlights the value of taking a participatory approach.

Now that we've developed our research questions, we're ready to move into the next phase of the project, where we will use pre-existing data from two large-scale national cohort studies (ALSPAC and MCS) to answer our questions. The bridging phase has played a key role in aligning this next stage of our work with community priorities.