Blog 4 of 4 in the Insights From Researchers on Co-production blog series
EPIC blogs usually focus on parent, teacher and clinician audiences. This series of blogs are the findings from a workshop for researchers entitled Overcoming barriers to co-production with children and adults with neurodevelopmental disabilities which took place during the Neurodevelopmental Disorders Annual Seminar 2022 held in Edinburgh. Following on from this series we will have the Insights from a Lived experience on Co-production blog series which will focus on getting involved in decision making about research from a parent perspective – Starting next week!
Inclusive Practices for Neurodevelopmental Research (Fletcher-Watson et al. 2021), The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants (2019) and Starter Pack: Participatory Autism Research (2017) are excellent starting points for planning a co-produced project with people with neurodevelopmental conditions like autism, ADHD, dyspraxia, dyslexia, developmental language disorder or Tourette’s syndrome. These three resources give clear practical guidelines about transparency around partnership goals, defining roles, setting expectations, recruitment (who to recruit and how), accessibility, building and maintaining trust, understanding intersectionality, and payment. A barrier to co-production is that often the funding is awarded after the idea has been developed and submitted for a funding call. Solutions to this problem include: 1) using alternative funding (funding left over from other projects, small public engagement grants) 2) establishing a department or research group specific advisory group to help with the development of projects, opposed to a project-specific group.
If the research is about children, a combination of neurodivergent children and adults is advised to co-produce the project (Fletcher-Watson et., 2021). For example, in our recent blog, Dr Rhodes explains how including the insights from children with ADHD improved the design of an intervention. Adults will have the hindsight, self-advocacy skills, language and understanding to identify research priorities. However, contributions from children or adolescents is recommended because a) they will be able to inform the practical side of the project (e.g. designing a feasible study) and, b) may also have perspectives on themes the adults do not have experience of (e.g. about social media, school during the pandemic). The interesting thing about doing co-production with children is that they may say the relevant piece of feedback at any moment. For example, the researcher might ask at the start of a group activity “what needs to change in your school?”. It may be half an hour later a child says “bullying is so bad in my school”. The researcher must be engaged and alert to record moments like this one.
Interviews and group workshops with children might work but more likely activities like writing, drawing, role-playing, puppets, describing pictures, taking pictures may work better depending on the age of the children. Questions may need to be adapted from “what would you like to see researched” to “if you were the principal in your school, what would you do?” Children may feel like they’ll get in trouble for criticising their school or services. Asking children to give feedback as a group somewhat addresses this issue. Providing a training day can improve children and adolescents confidence around raising problems. In addition, a training session/day can serve as an ice-breaker and allow a child build relationships with the research team and other children there. The structure of the co-production should also acknowledge the parents and in some cases the parents can facilitate the co-production; however it is important the parent does not speak for the child (even if they do not mean to). It is nice to recognise children’s contribution by giving them a certificate.
As is the case with research more generally, people with intellectual disabilities (ID) are often excluded from co-production and participatory research. Perhaps co-production with people with ID may be more difficult, but that is not a reason not to do it. A culture shift needs to happen with researchers towards believing adults with ID can be collaborators/members of PPI groups. Di Lorito and colleagues (2018) conducted a systematic review of ‘co-research’ with adults with Intellectual disability and describe the barriers and facilitators. They mention the following facilitators: 1. Recruiting individuals who are motivated and interested (simply being a person with an ID does not mean they are suited to the role), 2. Formal/informal training of skills or learning about research 3. Defining the roles of the researcher, the person with ID and the support worker and being flexible with the roles changing at different stages of the project, 4. Being aware of practical challenges like finding an accessible location, time, informing carers 5. Developing strategies for communicating complex themes e.g. visual aids, breaking down complex tasks into multiple steps, offering one-to-one interviews 6. Good relationships with services. Another paper (Schwartz et al., 2020) describes contextual factors which facilitate co-production with people with ID like a research team with a genuine commitment to including the views of people with ID. Photovoice has recently been used for research with children (Khawam et al., 2022) and adults with neurodevelopmental conditions and intellectual disabilities and can also be used as a tool to support co-production and participatory research methods (Williamson et al., 2020).
There is a variety of ways you can recruit people to join a co-production group: a) connecting through social media, possibly someone you have built a social media relationship with or someone whose posts are in line with the approach of the team, b) explicitly advertising on social media, c) partnering with charities, organisations or advocacy groups who are more often interested in being involved in the development of research d) emailing a known neurodivergent researcher/advocate who may want to get involved in research e) tagging an advertisement onto a science communication event e.g. public webinar for teachers or parents; see here for our previous blog on what makes teachers want to get involved in research.
When deciding who to recruit for co-production a mixture of community members and individuals with specific expertise is recommended (Nicolaidis et al., 2019). It is important to realise that the co-production group is not the same as the participant group (who will later take part in the research); and does not need to be ‘representative’ of the population in the same way a participant group would need to be. It is appropriate to recruit someone who has specialised skills or expertise in research, advocacy, and/or working in charities, organisations, or services (e.g. look at our advisory group for EPIC. After all, when recruiting for a research team, you look for researchers with particular skills not just any researcher.
References and more resources:
Ashworth, M., Crane, L., Steward, R., Bovis, M., & Pellicano, E. (2021). Toward empathetic autism research: Developing an autism-specific research passport. Autism in Adulthood, 3(3), 280-288. could also be used for involvement and co-production.
Fletcher-Watson, S., Brook, K., Hallett, S., Murray, F., & Crompton, C. J. (2021). Inclusive Practices for Neurodevelopmental Research. Current Developmental Disorders Reports, 1-10.
Nicolaidis, C., Raymaker, D., Kapp, S. K., Baggs, A., Ashkenazy, E., McDonald, K., … & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007-2019.
Schwartz, A. E., Kramer, J. M., Cohn, E. S., & McDonald, K. E. (2020). “That felt like real engagement”: Fostering and maintaining inclusive research collaborations with individuals with intellectual disability. Qualitative health research, 30(2), 236-249.
Di Lorito, C., Bosco, A., Birt, L., & Hassiotis, A. (2018). Co‐research with adults with intellectual disability: A systematic review. Journal of Applied Research in Intellectual Disabilities, 31(5), 669-686.
Williamson, H. J., van Heumen, L., & Schwartz, A. E. (2020). Photovoice with individuals with intellectual and/or developmental disabilities: Lessons learned from inclusive research efforts. Collaborations: A Journal of Community-Based Research and Practice, 3(1).
Khawam, G., Christie, H., McConachie, D., Goodall, K., Van Herwegen, J., Gallagher- Mitchell, T., Ballantyne, C., Richards, C., Moss, J., Crawford, H., Outhwaite, L.& Gillespie Smith, K. (2022).Road to recovery: Understanding the impact of COVID and recovery phases on children and young people with Intellectual Disabilities and their families. Open Science Framework. https://osf.io/e3yzj
Davison, J., Maguire, S., McLaughlin, M., & Simms, V. (2022). Involving adolescents with intellectual disability in the adaptation of self‐reported subjective well‐being measures: participatory research and methodological considerations. Journal of Intellectual Disability Research.
This workshop was funded by the University of Edinburgh College of Medicine and Veterinary Medicine Public Engagement Seed Fund through the Institutional Strategic Support Fund