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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:BackgroundPsychosocial adversity disproportionately affects racial/ethnic and socioeconomic minorities in the USA, and therefore understanding the mechanisms through which psychosocial stress and resilience influence human health can provide meaningful insights into addressing US health disparities. Despite this promise, psychosocial factors are infrequently and unsystematically collected in the US prospective cohort studies.MethodsWe sought to understand prospective cohort principal investigators' (PIs') attitudes regarding the importance of psychosocial influences on disease aetiology, in order to identify barriers and opportunities for greater inclusion of these domains in high-quality epidemiological research. One-hour, semi-structured qualitative interviews were conducted with 20 PIs representing 24 US prospective cohort studies funded by the National Institutes of Health (NIH), collectively capturing health data on 1.25 of every 100 American adults. A hypothesis-free, grounded theory approach was used to analyse and interpret interview data.ResultsMost cohort PIs view psychosocial factors as an important research area to further our understanding of disease aetiology and agree that this research will be crucial for future public health innovations. Virtually all PIs emphasised that future psychosocial research will need to elucidate biological and behavioural mechanisms in order to be taken seriously by the epidemiological community more broadly. A lack of pertinent funding mechanisms and a lack of consensus on optimal scales and measures of psychosocial factors were identified as additional barriers to advancing psychosocial research.ConclusionsOur interviews emphasised the need for: (1) high-quality, longitudinal studies that investigate biological mechanisms and pathways through which psychosocial factors influence health, (2) effort among epidemiological cohorts to broaden and harmonise the measures they use across cohorts, to facilitate replication of results and (3) the need for targeted funding opportunities from NIH and other grant-making institutions to study these domains.

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.

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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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