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Making the future together: Shaping autism research through meaningful participation.

ABSTRACT: Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people's lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.

SUBMITTER: Fletcher-Watson S

PROVIDER: S-EPMC6512245 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

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Making the future together: Shaping autism research through meaningful participation.

Fletcher-Watson Sue S Adams Jon J Brook Kabie K Charman Tony T Crane Laura L Cusack James J Leekam Susan S Milton Damian D Parr Jeremy R JR Pellicano Elizabeth E

Autism : the international journal of research and practice 20180810 4

Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people's lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar s ...[more]

PMID: 30095277

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Project description:BackgroundThere is a longstanding concern about the accuracy of surrogate consent in representing the health care and research preferences of those who lose their ability to decide for themselves. We sought informed, deliberative views of the older general public (?50 years old) regarding their willingness to participate in dementia research and to grant leeway to future surrogates to choose an option contrary to their stated wishes.Methodology/principal findings503 persons aged 50+ recruited by random digit dialing were randomly assigned to one of three groups: deliberation, education, or control. The deliberation group attended an all-day education/peer deliberation session; the education group received written information only. Participants were surveyed at baseline, after the deliberation session (or equivalent time), and one month after the session, regarding their willingness to participate in dementia research and to give leeway to surrogates, regarding studies of varying risk-benefit profiles (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial). At baseline, 48% (gene transfer scenario) to 92% (drug RCT) were willing to participate in future dementia research. A majority of respondents (57-71% depending on scenario) were willing to give leeway to future surrogate decision-makers. Democratic deliberation increased willingness to participate in all scenarios, to grant leeway in 3 of 4 scenarios (lumbar puncture, vaccine, and gene transfer), and to enroll loved ones in research in all scenarios. On average, respondents were more willing to volunteer themselves for research than to enroll their loved ones.Conclusions/significanceMost people were willing to grant leeway to their surrogates, and this willingness was either sustained or increased after democratic deliberation, suggesting that the attitude toward leeway is a reliable opinion. Eliciting a person's current preferences about future research participation should also involve eliciting his or her leeway preferences.

Project description:BackgroundThere is evidence that involving potential participants and the public in co-designing research can improve the quality of the study design, recruitment and acceptability of the research, but appropriate methodologies for doing this are not always clear. In this study we co-designed a way of involving people affected by a rare genomic disease in shaping future genomic research about the condition. The aim was to report the process, experiences and outcomes of involving people in genomic research in a standardised way, in order to inform future methods of involvement in research co-production.MethodParticipants were recruited from an online community hosted by an Australian-based rare disease charity and were over the age 18 years. Once people gave consent, we shared learning resources with participants and invited them to complete an online survey before joining a two-week facilitated online discussion, followed by a second online survey. We used the novel tool 'Standardised Data on Initiatives - Alpha Version 0.1' (STARDIT) to map preferences, plan involvement and report any outcomes from the process, with quantitative data analysed descriptively and qualitative data thematically analysed.ResultsOf the 26 people who gave consent and completed the initial survey, 15 participated in the online discussion and 12 completed the follow-up survey. STARDIT was used to report six outcomes from the process, including 60% of participants' responses showing a change towards 'widening' their view of who should be involved in research to include more people. Outcomes also included an improved understanding of research and how to be involved. Participants enjoyed online discussions, found learning resources useful and asked to stay involved in the research process. The partner organisation reported that a similar online discussion will be used in future research prioritisation processes.ConclusionInvolving people in co-designing the process improved the study design, ensuring it met the needs of participants. Whilst the study includes participants from only one disease group, using STARDIT allowed us to map people's preferences and report the methods and outcomes from involving people, providing a way for learning from this case study to inform future research studies beyond the discipline of public health genomics.

Project description:Background: Traditionally, adolescent participation in research has been tokenistic. Adolescents are rarely afforded the opportunity to influence decision-making in research designed to prevent obesity. Engaging adolescents in meaningful decision-making may enhance research translation. This review aimed to analyze the current modes and nature of adolescent participation in obesity prevention research decision-making. Methods: A systematic scoping review was conducted using Arksey and O'Malley's six-stage framework. Six major databases were searched for peer-reviewed primary research studies with adolescent participation related to obesity, physical activity, and diet. Modes of adolescent participation were categorized based on the Lansdown-UNICEF conceptual framework for measuring outcomes of adolescent participation. The framework outlines three modes of meaningful participation: (i) consultative, which involves taking opinions and needs into consideration; (ii) collaborative, where adolescents are partners in the decision-making process; and (iii) adolescent-led participation where adolescents have the capacity to influence the process and outcomes. The degree of involvement in research cycles was classified based on the National Health and Medical Research Council consumer engagement framework. Five stages of the research cycle were determined: identify, design and develop, conduct, analyze and disseminate. Results: In total, 126 papers describing 71 unique studies were identified. Of these, 69% (49/71) took place in the USA, and 85% (52/61) were conducted in minority or underserved communities, while males were more likely to be under-represented. In 49% (35/71) of studies, participation was consultative and 9% (6/71) of studies involved an adolescent-led approach. Furthermore, 87% (62/71) of studies incorporated adolescent participation in one or more of the research cycle's formative phases, which involve eliciting views, opinions and idea generation. Only 11% of studies engaged adolescents in all five stages of the research cycle where adolescents could have more influence over the research process. Conclusion: Meaningful adolescent participation in the obesity prevention research cycle is limited. Empowering and mobilizing equal partnership with adolescents should be at the forefront of all adolescent-related obesity prevention research.

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Making the future together: Shaping autism research through meaningful participation.

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Making the future together: Shaping autism research through meaningful participation.

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