Book chapter 48 views
Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project
,
Kathryn Williams ,
Karen Henry,
Willow Holloway,
Christina Nicolaidis ,
Helen Kara ,
Amy Brown
The Palgrave Handbook of Research Methods and Ethics in Neurodiversity Studies, Pages: 61 - 79
Swansea University Authors:
Aimee Grant , Amy Brown
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DOI (Published version): 10.1007/978-3-031-66127-3_4
Abstract
Within Autism research, many studies fail to meaningfully involve Autistic people. In this chapter, we report on the co-development of a successful funding application where we specifically aimed to involve Autistic people with and without relevant professional experience as partners from the outset...
| Published in: | The Palgrave Handbook of Research Methods and Ethics in Neurodiversity Studies |
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| ISBN: | 9783031661266 9783031661273 |
| Published: |
Cham
Springer Nature Switzerland
2024
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| Online Access: |
http://dx.doi.org/10.1007/978-3-031-66127-3_4 |
| URI: | https://cronfa.swan.ac.uk/Record/cronfa67936 |
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| Abstract: |
Within Autism research, many studies fail to meaningfully involve Autistic people. In this chapter, we report on the co-development of a successful funding application where we specifically aimed to involve Autistic people with and without relevant professional experience as partners from the outset and throughout the research. This includes how Aimee’s online consultation with Autistic people who had been pregnant resulted in a complete shift in the study’s boundaries from considering maternity only, to reproductive health across the life course. Next, we detail the in-depth discussions with Autistic community leaders (Kathryn and Willow) and an Autistic midwife (Karen) that shaped the study’s governance and research design prior to submission. Following this, we report the study’s approach to using creative research methods in an individually tailored way, and how this is an appropriate and ethical strategy when working with a heterogeneous group with differing communication needs and preferences for how they would like to take part in research. Finally, we then identify facilitators that may enable Autism researchers to co-develop ethical and participatory research funding applications. We conclude that participatory approaches which acknowledge Autistic strengths and centre the Autistic community have the best likelihood of the research benefitting Autistic people. |
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| College: |
Faculty of Medicine, Health and Life Sciences |
| Funders: |
Wellcome Trust |
| Start Page: |
61 |
| End Page: |
79 |