Katherine E McDonald1, Colleen Gibbons2, Nicole Conroy3,4, Robert S Olick5. 1. Department of Public Health, Falk College, Syracuse, New York, USA. 2. Center for Court Innovation, Syracuse, New York, USA. 3. Department of Human Development and Family Science, Falk College, Syracuse, New York, USA. 4. Human Development and Family Studies, University of Vermont, Burlington, Vermont, USA. 5. Center for Bioethics and Humanities, Upstate Medical University, Syracuse, New York, USA.
Abstract
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.
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.
Authors: Katherine E McDonald; Nicole E Conroy; Carolyn I Kim; Emily J LoBraico; Ellis M Prather; Robert S Olick Journal: J Empir Res Hum Res Ethics Date: 2016-07-31 Impact factor: 1.742
Authors: Christina Nicolaidis; Dora Raymaker; Katherine McDonald; Sebastian Dern; Elesia Ashkenazy; Cody Boisclair; Scott Robertson; Amanda Baggs Journal: Prog Community Health Partnersh Date: 2011
Authors: Christina Nicolaidis; Dora M Raymaker; Katherine E McDonald; Emily M Lund; Sandra Leotti; Steven K Kapp; Marsha Katz; Leanne M Beers; Clarissa Kripke; Joelle Maslak; Morrigan Hunter; Kelly Y Zhen Journal: Autism Adulthood Date: 2020-03-11