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

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Title: Risks and Safeguards in Social‐Behavioural Research With Adults With Developmental Disabilities: A Qualitative Systematic Review.
Authors: McDonald, Katherine (AUTHOR), Brodeur, Madison (AUTHOR), Schwartz, Ariel (AUTHOR)
Source: Journal of Applied Research in Intellectual Disabilities. Mar2025, Vol. 38 Issue 2, p1-14. 14p.
Subjects: Research funding, Human research subjects, Privacy, CINAHL database, Descriptive statistics, Developmental disabilities, Systematic reviews, Thematic analysis, MEDLINE, Social skills, Medical research, Interpersonal relations, Online information services, Medical ethics, Well-being, Psychology information storage & retrieval systems, Adults
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. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Risks and Safeguards in Social‐Behavioural Research With Adults With Developmental Disabilities: A Qualitative Systematic Review.
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– Name: Abstract
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  Data: 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. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
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  Group: Ab
  Data: <i>Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=184768025
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        Value: 10.1111/jar.70031
    Languages:
      – Code: eng
        Text: English
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      Pagination:
        PageCount: 14
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    Subjects:
      – SubjectFull: Research funding
        Type: general
      – SubjectFull: Human research subjects
        Type: general
      – SubjectFull: Privacy
        Type: general
      – SubjectFull: CINAHL database
        Type: general
      – SubjectFull: Descriptive statistics
        Type: general
      – SubjectFull: Developmental disabilities
        Type: general
      – SubjectFull: Systematic reviews
        Type: general
      – SubjectFull: Thematic analysis
        Type: general
      – SubjectFull: MEDLINE
        Type: general
      – SubjectFull: Social skills
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      – SubjectFull: Medical research
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      – SubjectFull: Interpersonal relations
        Type: general
      – SubjectFull: Online information services
        Type: general
      – SubjectFull: Medical ethics
        Type: general
      – SubjectFull: Well-being
        Type: general
      – SubjectFull: Psychology information storage & retrieval systems
        Type: general
      – SubjectFull: Adults
        Type: general
    Titles:
      – TitleFull: Risks and Safeguards in Social‐Behavioural Research With Adults With Developmental Disabilities: A Qualitative Systematic Review.
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            NameFull: McDonald, Katherine
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            NameFull: Brodeur, Madison
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            NameFull: Schwartz, Ariel
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            – D: 01
              M: 03
              Text: Mar2025
              Type: published
              Y: 2025
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              Value: 38
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            – TitleFull: Journal of Applied Research in Intellectual Disabilities
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