- <Centre d'Information et de documentation du CRA Rhône-Alpes
- CRA
- Informations pratiques
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Adresse
Centre d'information et de documentation
Horaires
du CRA Rhône-Alpes
Centre Hospitalier le Vinatier
bât 211
95, Bd Pinel
69678 Bron CedexLundi au Vendredi
Contact
9h00-12h00 13h30-16h00Tél: +33(0)4 37 91 54 65
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Fax: +33(0)4 37 91 54 37
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Adresse
Auteur Aimee GRANT
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Documents disponibles écrits par cet auteur (3)
Faire une suggestion Affiner la rechercheAnti-ableist language is fully compatible with high-quality autism research: Response to Singer et al. (2023) / Heini M. NATRI in Autism Research, 16-4 (April 2023)
Titre : 'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production Type de document : texte imprimé Auteurs : Gemma L. WILLIAMS, Auteur ; Rebecca ELLIS, Auteur ; Willow HOLLOWAY, Auteur ; Selena CAEMAWR, Auteur ; Monique CRAINE, Auteur ; Kathryn WILLIAMS, Auteur ; Aimee GRANT, Auteur Article en page(s) : p.2205-2215 Langues : Anglais (eng) Mots-clés : action research autism community-based participatory research participatory action research participatory research qualitative research Index. décimale : PER Périodiques Résumé : This article describes and reflects on the first six meetings of a newly established Autistic community council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. The two key aims of these initial six meetings - involving four Autistic community leader members and three Autistic researchers - was to (1) guide the start of the project and the development of accessible recruitment materials for the future eight lay members and (2) establish a safe space and a model of accessible communication. We draw on extracts from transcripts made during meetings, member 'field' notes and a reflexive co-writing practice to identify the ways in which a sense of safety was built during these first community council meetings. We explore what it means to be an insider-only Community Partnered Participatory Research Council and reflect on the praxis we developed to facilitate Autistic knowledge production.Lay Abstract In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other?s sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights. En ligne : https://dx.doi.org/10.1177/13623613241253014 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566
in Autism > 29-9 (September 2025) . - p.2205-2215[article] 'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production [texte imprimé] / Gemma L. WILLIAMS, Auteur ; Rebecca ELLIS, Auteur ; Willow HOLLOWAY, Auteur ; Selena CAEMAWR, Auteur ; Monique CRAINE, Auteur ; Kathryn WILLIAMS, Auteur ; Aimee GRANT, Auteur . - p.2205-2215.
Langues : Anglais (eng)
in Autism > 29-9 (September 2025) . - p.2205-2215
Mots-clés : action research autism community-based participatory research participatory action research participatory research qualitative research Index. décimale : PER Périodiques Résumé : This article describes and reflects on the first six meetings of a newly established Autistic community council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. The two key aims of these initial six meetings - involving four Autistic community leader members and three Autistic researchers - was to (1) guide the start of the project and the development of accessible recruitment materials for the future eight lay members and (2) establish a safe space and a model of accessible communication. We draw on extracts from transcripts made during meetings, member 'field' notes and a reflexive co-writing practice to identify the ways in which a sense of safety was built during these first community council meetings. We explore what it means to be an insider-only Community Partnered Participatory Research Council and reflect on the praxis we developed to facilitate Autistic knowledge production.Lay Abstract In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other?s sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights. En ligne : https://dx.doi.org/10.1177/13623613241253014 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566
Titre : Exploring Autistic People’s Experiences of and Attitudes Towards Cervical Screening: A Mixed-Methods Study Type de document : texte imprimé Auteurs : Shona MURDOCH, Auteur ; Bethany DONAGHY, Auteur ; Aimee GRANT, Auteur ; Kayleigh SHEEN, Auteur ; David John MOORE, Auteur Article en page(s) : p.1738-1748 Langues : Anglais (eng) Mots-clés : autism cancer screening cervical screening mixed methods theory of planned behaviour Index. décimale : PER Périodiques Résumé : Cervical screening can be lifesaving, yet attendance rates are lower than recommended within the general population and even lower within the autistic population. There is currently no published research systematically exploring autistic people’s cervical screening experiences. This research aimed to explore the experience of cervical (“smear”) screening for autistic people in the United Kingdom. Autistic people (N = 97) completed an online mixed-methods questionnaire about their cervical screening experiences. Questions considered experiences of pain, sensory and communication issues, knowledge of cervical cancer, attitudes towards screening, and experience of sexual assault. Findings suggest that an autistic person’s intention to attend their screening is important to understand their actual attendance at the screening. Quantitatively, pain, sensory and communication issues, or knowledge of cervical cancer were not associated with screening attendance. However, qualitatively, they were. Two themes emerged: “Communication disconnect across the care journey” and” Echoes of the past: the lasting impact of previous care encounters” were discussed as barriers to screening engagement. This research highlights the need to improve healthcare communication and other accessibility needs for autistic people when attending cervical screening and for further development of appropriate measurement tools. More research is needed to further inform methods of improving cervical screening services for autistic people.Lay Abstract Cervical screening (“smear tests”) can prevent the development of cervical cancer by spotting the signs early. These screening tests can be lifesaving. A large number of the general population do not attend their cervical screening test when invited, and this is even higher for autistic people. One problem is that there is no research to understand why autistic people might not attend their smear tests. We asked autistic people in the United Kingdom to complete a questionnaire online to see who has attended their smear test when invited and looked at different things that might be important in this decision. Pain, sensory issues, and knowledge of cervical cancer did not seem to be important in explaining who did and did not attend a screening appointment. Communication (before, during, and after the screening tests) and previous negative experiences of healthcare (both in general and previous cervical screening tests) were important. This research further highlights the need for more training for healthcare providers in communication for diverse communities and communication needs. More research is also needed to better understand autistic people’s cervical screening and wider healthcare experiences. En ligne : https://dx.doi.org/10.1177/13623613261439937 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590
in Autism > 30-7 (July 2026) . - p.1738-1748[article] Exploring Autistic People’s Experiences of and Attitudes Towards Cervical Screening: A Mixed-Methods Study [texte imprimé] / Shona MURDOCH, Auteur ; Bethany DONAGHY, Auteur ; Aimee GRANT, Auteur ; Kayleigh SHEEN, Auteur ; David John MOORE, Auteur . - p.1738-1748.
Langues : Anglais (eng)
in Autism > 30-7 (July 2026) . - p.1738-1748
Mots-clés : autism cancer screening cervical screening mixed methods theory of planned behaviour Index. décimale : PER Périodiques Résumé : Cervical screening can be lifesaving, yet attendance rates are lower than recommended within the general population and even lower within the autistic population. There is currently no published research systematically exploring autistic people’s cervical screening experiences. This research aimed to explore the experience of cervical (“smear”) screening for autistic people in the United Kingdom. Autistic people (N = 97) completed an online mixed-methods questionnaire about their cervical screening experiences. Questions considered experiences of pain, sensory and communication issues, knowledge of cervical cancer, attitudes towards screening, and experience of sexual assault. Findings suggest that an autistic person’s intention to attend their screening is important to understand their actual attendance at the screening. Quantitatively, pain, sensory and communication issues, or knowledge of cervical cancer were not associated with screening attendance. However, qualitatively, they were. Two themes emerged: “Communication disconnect across the care journey” and” Echoes of the past: the lasting impact of previous care encounters” were discussed as barriers to screening engagement. This research highlights the need to improve healthcare communication and other accessibility needs for autistic people when attending cervical screening and for further development of appropriate measurement tools. More research is needed to further inform methods of improving cervical screening services for autistic people.Lay Abstract Cervical screening (“smear tests”) can prevent the development of cervical cancer by spotting the signs early. These screening tests can be lifesaving. A large number of the general population do not attend their cervical screening test when invited, and this is even higher for autistic people. One problem is that there is no research to understand why autistic people might not attend their smear tests. We asked autistic people in the United Kingdom to complete a questionnaire online to see who has attended their smear test when invited and looked at different things that might be important in this decision. Pain, sensory issues, and knowledge of cervical cancer did not seem to be important in explaining who did and did not attend a screening appointment. Communication (before, during, and after the screening tests) and previous negative experiences of healthcare (both in general and previous cervical screening tests) were important. This research further highlights the need for more training for healthcare providers in communication for diverse communities and communication needs. More research is also needed to better understand autistic people’s cervical screening and wider healthcare experiences. En ligne : https://dx.doi.org/10.1177/13623613261439937 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590
