Working together with autistic adults to widen research participation in primary care
Working together with autistic adults to widen research participation in primary care
Background: inclusive research design is vital to ensure findings are relevant and generalisable. However, autistic individuals face barriers to participation because of complex recruitment methods, inaccessible documents, and unclear instructions. To address these issues, we need to develop new, simpler and more inclusive ways to encourage participation.
Methods: using an exemplar study (StopAMR), we tried new approaches to inclusion. We adapted the Listening Café model—a format that encourages open, informal discussion—for autistic participants. Two groups were involved: an online group of six autistic individuals recruited through local networks, and a community group of 30 members run by the National Autistic Society. Listening Café sessions focused on relationship-building, reviewing recruitment documents, participant information, and informed consent processes. Insights from these sessions informed the development of guidelines to make materials clearer, more accessible, and inclusive.
Results: participants in both groups valued the opportunity of participating and gained confidence in contributing and sharing their ideas. The Listening Café model worked well but to ensure success, we needed to be flexible, adapt quickly, and try different approaches in response to the group’s needs. The review of recruitment materials highlighted that small changes to structure, language, tone, and format can significantly enhance clarity and accessibility. Additionally, content that clearly explains processes, affiliations, and ethical considerations plays a key role in building trust.
Conclusions: ensuring research is accessible is a priority to ensure relevance and generalisability. Small adjustments to recruitment materials have the potential to reach a broader group of participants. Involving autistic people directly in designing these materials has the potential to prevent unintentional exclusion and ensures their perspectives are represented. Ultimately, these adjustments not only support inclusion for autistic communities but also improve clarity and accessibility for all research participants.
Miller, Sascha
448d724f-ce7d-4e8e-9ff1-e0255e995c77
Vennik, Jane
6ee78166-5a7a-433b-87fc-018771f20b19
Henaghan-Sykes, Kate
cabaf937-2270-42c3-838c-6921a27415b8
5 March 2026
Miller, Sascha
448d724f-ce7d-4e8e-9ff1-e0255e995c77
Vennik, Jane
6ee78166-5a7a-433b-87fc-018771f20b19
Henaghan-Sykes, Kate
cabaf937-2270-42c3-838c-6921a27415b8
Miller, Sascha, Vennik, Jane and Henaghan-Sykes, Kate
(2026)
Working together with autistic adults to widen research participation in primary care.
2026 South West SAPC (Society for Academic Primary Care) Conference, , Southampton, United Kingdom.
05 - 07 Mar 2026.
Record type:
Conference or Workshop Item
(Paper)
Abstract
Background: inclusive research design is vital to ensure findings are relevant and generalisable. However, autistic individuals face barriers to participation because of complex recruitment methods, inaccessible documents, and unclear instructions. To address these issues, we need to develop new, simpler and more inclusive ways to encourage participation.
Methods: using an exemplar study (StopAMR), we tried new approaches to inclusion. We adapted the Listening Café model—a format that encourages open, informal discussion—for autistic participants. Two groups were involved: an online group of six autistic individuals recruited through local networks, and a community group of 30 members run by the National Autistic Society. Listening Café sessions focused on relationship-building, reviewing recruitment documents, participant information, and informed consent processes. Insights from these sessions informed the development of guidelines to make materials clearer, more accessible, and inclusive.
Results: participants in both groups valued the opportunity of participating and gained confidence in contributing and sharing their ideas. The Listening Café model worked well but to ensure success, we needed to be flexible, adapt quickly, and try different approaches in response to the group’s needs. The review of recruitment materials highlighted that small changes to structure, language, tone, and format can significantly enhance clarity and accessibility. Additionally, content that clearly explains processes, affiliations, and ethical considerations plays a key role in building trust.
Conclusions: ensuring research is accessible is a priority to ensure relevance and generalisability. Small adjustments to recruitment materials have the potential to reach a broader group of participants. Involving autistic people directly in designing these materials has the potential to prevent unintentional exclusion and ensures their perspectives are represented. Ultimately, these adjustments not only support inclusion for autistic communities but also improve clarity and accessibility for all research participants.
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Published date: 5 March 2026
Venue - Dates:
2026 South West SAPC (Society for Academic Primary Care) Conference, , Southampton, United Kingdom, 2026-03-05 - 2026-03-07
Identifiers
Local EPrints ID: 511735
URI: http://eprints.soton.ac.uk/id/eprint/511735
PURE UUID: ad2a46bd-42a2-4a01-aaf7-54e5299c4423
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Date deposited: 29 May 2026 16:39
Last modified: 30 May 2026 02:26
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Contributors
Author:
Kate Henaghan-Sykes
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