Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study / Lucy BEASANT in Autism, 28-6 (June 2024)  

Public ISBD [article]  inAutism > 28-6 (June 2024) . - p.1540-1550 Titre : Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study Type de document : Texte imprimé et/ou numérique Auteurs : Lucy BEASANT, Auteur ; Alba REALPE, Auteur ; Sarah DOUGLAS, Auteur ; Lorcan KENNY, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur Article en page(s) : p.1540-1550 Langues : Anglais (eng) Mots-clés : autistic adults  co-production  learning disabilities  qualitative research  trial methodology Index. décimale : PER Périodiques Résumé : The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) 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 randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials 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. Lay abstract Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. En ligne : https://dx.doi.org/10.1177/13623613231202432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study [Texte imprimé et/ou numérique] / Lucy BEASANT, Auteur ; Alba REALPE, Auteur ; Sarah DOUGLAS, Auteur ; Lorcan KENNY, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur . - p.1540-1550. Langues : Anglais (eng) in Autism > 28-6 (June 2024) . - p.1540-1550 Mots-clés : autistic adults  co-production  learning disabilities  qualitative research  trial methodology Index. décimale : PER Périodiques Résumé : The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) 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 randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials 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. Lay abstract Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. En ligne : https://dx.doi.org/10.1177/13623613231202432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

The accessibility of online, asynchronous, focus groups with autistic participants / Henna CUNDILL in Good Autism Practice - GAP, 24-1 (May 2023)

Public ISBD [article]  inGood Autism Practice - GAP > 24-1 (May 2023) . - p.66-72 Titre : The accessibility of online, asynchronous, focus groups with autistic participants Type de document : Texte imprimé et/ou numérique Auteurs : Henna CUNDILL, Auteur ; Sarah DOUGLAS, Auteur ; Krysia WALDOCK, Auteur ; Christopher BARBER, Auteur ; Stewart RAPLEY, Auteur Article en page(s) : p.66-72 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Increasingly, researchers are using online surveys and other online methods to obtain data directly from autistic participants. It is therefore important to ensure that what is done takes account of the perspectives of autistic people, particularly those who are similar to the sample selected and to learn from previous participatory research. This paper compares two online, asynchronous focus groups which took place as part of a Participatory Action Research project. The lead researcher, HC worked with three autistic students studying at the Centre for Autism and Theology at Aberdeen University and another autistic student based at the Tizard Centre at the University of Kent (KW). The project was designed collaboratively by this group. The first focus group was a pilot looking at autism and Christian prayer. It was predicted that using an online, text-based, and asynchronous format would reduce barriers to accessibility for autistic participants. However, during and after the pilot, some participants still reported barriers. These included anxiety triggered by uncertainty, social anxiety and executive functioning issues. Having learned from the pilot, the main focus group was designed to address the barriers identified and to build on the positives and six new autistic participants were recruited. Additional steps were taken before, during and after the Focus Group to assist participants with planning and scheduling their engagement, and to reduce social anxiety and uncertainty. The main focus group saw increased levels of participation when compared with the pilot. Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=540 [article] The accessibility of online, asynchronous, focus groups with autistic participants [Texte imprimé et/ou numérique] / Henna CUNDILL, Auteur ; Sarah DOUGLAS, Auteur ; Krysia WALDOCK, Auteur ; Christopher BARBER, Auteur ; Stewart RAPLEY, Auteur . - p.66-72. Langues : Anglais (eng) in Good Autism Practice - GAP > 24-1 (May 2023) . - p.66-72 Index. décimale : PER Périodiques Résumé : Increasingly, researchers are using online surveys and other online methods to obtain data directly from autistic participants. It is therefore important to ensure that what is done takes account of the perspectives of autistic people, particularly those who are similar to the sample selected and to learn from previous participatory research. This paper compares two online, asynchronous focus groups which took place as part of a Participatory Action Research project. The lead researcher, HC worked with three autistic students studying at the Centre for Autism and Theology at Aberdeen University and another autistic student based at the Tizard Centre at the University of Kent (KW). The project was designed collaboratively by this group. The first focus group was a pilot looking at autism and Christian prayer. It was predicted that using an online, text-based, and asynchronous format would reduce barriers to accessibility for autistic participants. However, during and after the pilot, some participants still reported barriers. These included anxiety triggered by uncertainty, social anxiety and executive functioning issues. Having learned from the pilot, the main focus group was designed to address the barriers identified and to build on the positives and six new autistic participants were recruited. Additional steps were taken before, during and after the Focus Group to assist participants with planning and scheduling their engagement, and to reduce social anxiety and uncertainty. The main focus group saw increased levels of participation when compared with the pilot. Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=540

---

1 (1 - 2 / 2)