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Guidelines for conducting research studies with the autism community.

ABSTRACT: There has been growing awareness of the concern expressed by autism communities that the majority of research conducted does not reflect the priorities or needs of autistic people and their families. Further, many autistic people report that they feel unable to influence research and desire greater involvement in the research process. Our research generated practical guidelines for researchers to consider when conducting autism research, in order to increase involvement, collaboration and trust between researchers and the autism community. These guidelines are based on the output of focus groups and interview discussions with twenty-two autistic adults and eight parents of autistic children, conducted during a series of workshops carried out as a collaboration between the research network Autism@Manchester and Salfordautism, an autism support group led and run by autistic professionals. The guidelines are organised into four sections: (1) pre-study considerations, (2) recruitment of participants, (3) study visit considerations and (4) post-study considerations. These sections are structured to reflect the research pathway, to allow researchers to understand more easily how to incorporate the recommendations into their research. The recommendations promote effective communication and equal partnerships between the autism and research communities, so that the needs of participants pre-research, during and post- research are taken into account, and so that participants are supported to become involved in research at the level they choose. It is hoped that by implementing transparent and participatory approaches to their work, researchers might be able to reduce some of the dissatisfaction that members of the autism community feel towards research, leading to higher standards in autism research.

SUBMITTER: Gowen E

PROVIDER: S-EPMC7099931 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Guidelines for conducting research studies with the autism community.

Gowen Emma E Taylor Rachel R Bleazard Thomas T Greenstein Anat A Baimbridge Peter P Poole Daniel D

Autism policy & practice 20190901 1 A new beginning

There has been growing awareness of the concern expressed by autism communities that the majority of research conducted does not reflect the priorities or needs of autistic people and their families. Further, many autistic people report that they feel unable to influence research and desire greater involvement in the research process. Our research generated practical guidelines for researchers to consider when conducting autism research, in order to increase involvement, collaboration and trust ...[more]

PMID: 32226635

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Project description:PurposeThis qualitative study examined fiscal and administrative (i.e., pre- and post-award grants process) barriers and facilitators to community-engaged research among stakeholders across 4 Clinical and Translational Science Awards (CTSA) institutions.MethodA purposive sample of 24 key informants from 3 stakeholder groups-community partners, academic researchers, and research administrators-from the CTSA institutions at the University of North Carolina at Chapel Hill, Medical University of South Carolina, Vanderbilt University Medical Center, and Yale University participated. Semistructured interviews were conducted in March-July 2018, including questions about perceived challenges and best practices in fiscal and administrative processes in community-engaged research. Transcribed interviews were independently reviewed and analyzed using the Rapid Assessment Process to facilitate key theme and quote identification.ResultsCommunity partners were predominantly Black, academic researchers and research administrators were predominantly White, and women made up two-thirds of the overall sample. Five key themes were identified: level of partnership equity, partnership collaboration and communication, institutional policies and procedures, level of familiarity with varying fiscal and administrative processes, and financial management expectations. No stakeholders reported best practices for the institutional policies and procedures theme. Cross-cutting challenges included communication gaps between stakeholder groups; lack of or limits in supporting community partners' fiscal capacity; and lack of collective awareness of each stakeholder group's processes, procedures, and needs. Cross-cutting best practices centered on shared decision making and early and timely communication between all stakeholder groups in both pre- and post-award processes.ConclusionsFindings highlight the importance of equitable processes, triangulated communication, transparency, and recognizing and respecting different financial management cultures within community-engaged research. This work can be a springboard used by CTSA institutions to build on available resources that facilitate co-learning and discussions between community partners, academic researchers, and research administrators on fiscal readiness and administrative processes for improved community-engaged research partnerships.

Project description:IntroductionDespite the widely recognized ethical and practical benefits of community engagement in HIV research, epistemic injustice persists within the field. Namely, the knowledge held by communities disproportionately affected by HIV is systematically afforded less credibility than that of more privileged academic researchers. In order to illustrate what this looks like in practice, we synthesized the extent of reporting on community engagement within recent high-impact HIV intervention research papers. However, we also posit that the HIV research sector has the potential to devise and showcase world-leading examples of equitable research-community partnerships and suggest actionable key steps to achieving this goal.DiscussionIn the absence of reporting requirements within the publishing process, it is difficult to infer whether and how the community have been consulted in the design, implementation, analysis and/or interpretation of findings. As an illustrative exercise, we offer a rapid synthesis of the extent of reporting on community engagement in HIV research from 2017 to 2019, which highlighted sporadic and very low rates of reporting of community engagement in recent high-impact HIV intervention studies. Of note is that none of the included studies reported on community engagement through all stages of the research process. There were also discrepancies in how community involvement was reported. We provide three actionable recommendations to enhance reporting on community engagement in HIV research: (1) community-led organizations, researchers and scientific journals should band together to develop, publish and require adherence to standardized guidelines for reporting on community involvement in HIV research; (2) research funders should (continue to) require details about how relevant communities have been engaged prior to the submission of funding requests; and (3) researchers should take proactive measures to describe their engagement with community organizations in a clear and transparent manner.ConclusionsThere is a clear and urgent need for guidelines that facilitate transparent and consistent reporting on community engagement in HIV intervention research. Without standardized reporting requirements and accountability mechanisms within the research sector, the extent of meaningful community engagement cannot be established and may remain a catchphrase rather than reality.

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Guidelines for conducting research studies with the autism community.

Publications

Guidelines for conducting research studies with the autism community.

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