TY - JOUR
T1 - Facilitating the inclusion of adults with intellectual disability as direct respondents in research
T2 - Strategies for fostering trust, respect, accessibility and engagement
AU - McDonald, Katherine E.
AU - Gibbons, Colleen
AU - Conroy, Nicole
AU - Olick, Robert S.
N1 - Funding Information:
This work was funded by Portland State University Faculty Enhancement Grant (PI McDonald), Oregon Health and Sciences University Medical Research Foundation (PI McDonald) and the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R21HD075078 (PI McDonald). The content is solely ours and does not necessarily represent the official views of these funders. We extend our gratitude to Project ETHICS Expert Panel members – Anna Carroll, Marty Cuddy, Micah Fialka-Feldman, Dan Flanigan, Pat Fratangelo, Lance Gonzalez, Michael Kennedy, Kathleen King, Chris Mansfield, Deb McGowan, Rachel Romer, Margaret Turk, Shquria Velez, Pamela Walker and Priscilla Worral – as well as the Self-Advocacy Association of New York State – Central Region, the Madison Motivators, and Colleen Kidney, Carolyn Kim, Emily LoBraico, Sandra Nelms, Mazna Patka, Ellis Prather, Lyndsey Creed, Nicole Schwartz and Michael Sperling.
Funding Information:
This work was funded by Portland State University Faculty Enhancement Grant (PI McDonald), Oregon Health and Sciences University Medical Research Foundation (PI McDonald) and the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R21HD075078 (PI McDonald). The content is solely ours and does not necessarily represent the official views of these funders. We extend our gratitude to Expert Panel members – Anna Carroll, Marty Cuddy, Micah Fialka‐Feldman, Dan Flanigan, Pat Fratangelo, Lance Gonzalez, Michael Kennedy, Kathleen King, Chris Mansfield, Deb McGowan, Rachel Romer, Margaret Turk, Shquria Velez, Pamela Walker and Priscilla Worral – as well as the Self‐Advocacy Association of New York State – Central Region, the Madison Motivators, and Colleen Kidney, Carolyn Kim, Emily LoBraico, Sandra Nelms, Mazna Patka, Ellis Prather, Lyndsey Creed, Nicole Schwartz and Michael Sperling. Project ETHICS
Funding Information:
Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health, Grant/Award Number: R21HD075078; Oregon Health and Sciences University Medical Research Foundation; Portland State University Faculty Enhancement Grant Funding information
Publisher Copyright:
© 2021 John Wiley & Sons Ltd.
PY - 2022/1
Y1 - 2022/1
N2 - Background: Adults with intellectual disability experience disparities in social determinants of health and health outcomes. While new knowledge can advance health equity, adults with intellectual disability are frequently excluded from being direct respondents in research. Their inclusion requires addressing scientific and ethical challenges that contribute to their exclusion. Method: We describe our multi-phased process, inclusive of community-engagement, to develop a self-report survey for adults with intellectual disability and share findings from an institutional ethnography conducted to identify strategies for facilitating inclusion. We also assessed indicators of the quality of these strategies. Results: We identified building trust, showing respect, designing in accessibility, maximising flexibility and allowing individualised accommodations as strategies that foster inclusion. Multiple indicators validate the effectiveness of these strategies. Conclusions: Researchers can promote first-person decision-making and direct research participation by focusing on promoting accessibility, trust, respect and engagement.
AB - Background: Adults with intellectual disability experience disparities in social determinants of health and health outcomes. While new knowledge can advance health equity, adults with intellectual disability are frequently excluded from being direct respondents in research. Their inclusion requires addressing scientific and ethical challenges that contribute to their exclusion. Method: We describe our multi-phased process, inclusive of community-engagement, to develop a self-report survey for adults with intellectual disability and share findings from an institutional ethnography conducted to identify strategies for facilitating inclusion. We also assessed indicators of the quality of these strategies. Results: We identified building trust, showing respect, designing in accessibility, maximising flexibility and allowing individualised accommodations as strategies that foster inclusion. Multiple indicators validate the effectiveness of these strategies. Conclusions: Researchers can promote first-person decision-making and direct research participation by focusing on promoting accessibility, trust, respect and engagement.
KW - adults with intellectual disability
KW - community-engaged research
KW - research participation
KW - self-report surveys
KW - survey development
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U2 - 10.1111/jar.12936
DO - 10.1111/jar.12936
M3 - Article
C2 - 34559449
AN - SCOPUS:85115371332
SN - 1360-2322
VL - 35
SP - 170
EP - 178
JO - Mental Handicap Research
JF - Mental Handicap Research
IS - 1
ER -