Exeter Longitudinal Study of Neurodiverse Young People and their Families
Members of the Children and Young People's Wellbeing @ Exeter Network, alongside Jane Elliott and expert manager of cohort studies, and Anita Salimi, participated in a research writing retreat that provided protected time and shared space to focus on a grant application to explore the feasibility of establishing an ‘Exeter Cohort of Neurodivergent Young People and their Families’.
Dr Anna Price (SPCR and ChYMe), Dr Abby Russell (ChYMe, SPHR), Dr Tamsin Newlove-Delgado (ChYMe, SPHR), and Dr Doretta Caramaschi (Department of Psychology) together with the aforesaid experts, collaboratively and creatively designed a mixed methods research project. The project is informed by perspectives including health services research, psychology, sociology, public health, and primary care research. The team extended expertise ranged from epidemiology, working with longitudinal cohorts, to conducting research with hard-to-reach populations (including the target population). The retreat included a meeting with a young person who is an expert by lived experience, who was able to advise on and provide input to the overall proposal, as well as consulting on specific elements of the planned research. By spending protected time together, attendees had opportunities to learn about each other’s disciplines and working practices. This enabled the team to find creative and suitable ways of combining expertise to design a substantial research proposal. A nearly complete first draft of the grant application, with a jointly agreed timetable for submission was possible thanks to the retreat.
The project team is now holding regular meetings and is on target for submission of a full grant application by January 2023. Their project aims to test the feasibility of establishing a medium size cohort of families at-risk of neurodevelopmental disorders (ND) and mental health difficulties. This project will fill gaps in knowledge about how to include at-risk families appropriately and feasibly in a research cohort, including developing strategies to include young people with different levels of ND difficulties. For example, developing innovative techniques to carry out assessments with non-verbal children, or children with severe sensory processing difficulties.
Finding the time to co-create our research proposal would not have been possible, without the generous support of the Children and Young People's Wellbeing @ Exeter Engagement Award. This facilitated bringing a diverse team together into one place, funded time for Participant and Public Involvement and Engagement, and helped provide protected writing and thinking time for all involved.
Learn more about our collaborators
- Dr Anna Price, NIHR School for Primary Care Research, Children and Young People’s Mental Health Research Collaboration (ChYMe), NIHR Three Schools Mental Health Research Fellow. Applied health sciences research, with a focus on Attention Deficit Hyperactivity Disorder (ADHD) and Autistic Spectrum Disorder (ASD).
- Dr Abby Russell, ChYMe, Senior Lecturer in Child and Adolescent Mental Health, NIHR Advanced Fellow. Epidemiology and psychology with a focus on ADHD.
- Dr Tamsin Newlove-Delgado, NIHR School for Public Health Research, ChYMe, Senior Clinical Lecturer and Honorary Consultant in Public Health Medicine, NIHR Advanced Fellow. Epidemiology, child psychiatry, and public health medicine.
- Dr Doretta Caramaschi, Department of Psychology, Lecturer in Neurodevelopmental Epigenetics. Neuroscientist, epidemiologist, and epigeneticist
- Professor Jane Elliott, Department of Sociology, Former director of ESCR-funded Centre for Longitudinal Studies which managed the 1958, 1970, and Millennium Birth Cohort Studies. Responsible for Longitudinal Study of Young People in England.
- Professor Ginny Russell, Sociology, Interdisciplinary Scholar, Psychiatric Epidemiology with a focus on neurodiversity (e.g., ADHD, ASD)
- Miss Anita Salimi, PPI representative, neurodiverse young person with ADHD (aged 22)
