Abstract
Purpose: To explore the views of autistic adults on randomised controlled trials (RCTs), specifically on processes such as randomisation and blinding, to understand barriers and facilitators for recruiting autistic people to RCTs involving medications.
Methods: We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically.
Results: Participants found RCT processes acceptable and linked positive attitudes towards RCT participation to autistic peoples’ heightened sense of fairness and preference for evidence-driven knowledge. However, RCT designs may be incompatible with i) a preference for a controlled predictable world, ii) perceived vulnerability at physical and mental health levels, and iii) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our
findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to RCT participation.
Conclusion: We explored what psychosocial determinants play a role in the acceptability of RCTs to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community.
Methods: We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically.
Results: Participants found RCT processes acceptable and linked positive attitudes towards RCT participation to autistic peoples’ heightened sense of fairness and preference for evidence-driven knowledge. However, RCT designs may be incompatible with i) a preference for a controlled predictable world, ii) perceived vulnerability at physical and mental health levels, and iii) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our
findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to RCT participation.
Conclusion: We explored what psychosocial determinants play a role in the acceptability of RCTs to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community.
| Original language | English |
|---|---|
| Journal | Autism |
| DOIs | |
| Publication status | Published - 26 Oct 2023 |
Bibliographical note
Funding Information:The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This project was funded by the Avon and Wiltshire Partnership NHS Trust (NIHR Research Capability Funding), National Institute for Health and Care Research Bristol Biomedical Research Centre and the National Institute for Health Research HTA programme (NIHR 127337). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Publisher Copyright:
© The Author(s) 2023.
