Risks and Safeguards in Social‐Behavioural Research With Adults With Developmental Disabilities: A Qualitative Systematic Review

ABSTRACT Background We identified participant‐level risks and safeguards in social‐behavioural research with adults with developmental disabilities. Method We conducted a qualitative systematic review on risks and safeguards in peer‐reviewed research with adults with developmental disabilities. We i...

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Bibliographic Details
Published inJournal of applied research in intellectual disabilities Vol. 38; no. 2; pp. e70031 - n/a
Main Authors McDonald, Katherine, Brodeur, Madison, Schwartz, Ariel
Format Journal Article
LanguageEnglish
Published Oxford, UK Blackwell Publishing Ltd 01.03.2025
Wiley Subscription Services, Inc
Subjects
Adult
Adults
Behavioral Research
Confidentiality
Developmental disabilities
Developmental Disabilities - psychology
developmental disability
Humans
inclusion
Qualitative Research
Reference Materials
research ethics
Research Subjects - psychology
responsible
Review
risks
safeguards
Social Behavior
Systematic review
inclusion
safeguards
risks
research ethics
developmental disability
responsible
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Summary:ABSTRACT Background We identified participant‐level risks and safeguards in social‐behavioural research with adults with developmental disabilities. Method We conducted a qualitative systematic review on risks and safeguards in peer‐reviewed research with adults with developmental disabilities. We identified research reporting on risks and safeguards published between 2009 and 2023 by searching eight databases and conducting hand searches of reference lists. We conducted thematic analysis using independent data extraction and coding, and investigator triangulation. Results From 23 manuscripts, we identified: (1) risks associated with research participation of adults with developmental disabilities (e.g., physical, relational, psychological, and social risks as well as a loss of privacy and confidentiality) and (2) safeguards (e.g., using guiding frameworks, reducing participant burden, securing privacy and confidentiality, and fostering psychological and relational well‐being). Conclusions We encourage researchers to foster positive experiences so research participants feel valued and respected, and enjoy having the experience and opportunity to contribute to scientific discoveries.
Bibliography:Funding
This work was supported by Patient‐Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASC‐IDD‐00301; Co‐Leads McDonald and Schwartz), MGH Institute of Health Professions, Syracuse Office of Undergraduate Research and Creative Engagement and Patient‐Centered Outcomes Research Institute.
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Funding: This work was supported by Patient‐Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASC‐IDD‐00301; Co‐Leads McDonald and Schwartz), MGH Institute of Health Professions, Syracuse Office of Undergraduate Research and Creative Engagement and Patient‐Centered Outcomes Research Institute.
ISSN:1360-2322
1468-3148
1468-3148
DOI:10.1111/jar.70031