Perceptions attitudes and ethical concerns related to conducting research with adults

Perceptions attitudes and ethical concerns related to conducting research with adults with intellectual disability hinder scientific development to promote health. emphasize the importance of their inclusion in research and the need for policies and practices that promote respect and safety. = 24) people who provide social services to adults with intellectual disability (= 21) and family members and close friends of adults with intellectual disability (= 12). We invited adults with intellectual disability who did not have prior experience as an adult research participant. Participants self-reported their disability and were from an array of circumstances including those with and without court-appointed guardians those living independently in the community and in group homes those with and without intimate partners and those working and not working for pay though most received Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). We also invited professionals who currently provide or have in the past 12 months provided social services to adults with intellectual disability directly or through management roles (e.g. direct care providers case managers benefit coordinators inclusion specialists program directors and executive directors) and family members and close friends of adults with intellectual disability who provided unpaid support to at least one adult with intellectual disability in the past 12 months. Family members close friends GSK1292263 and service providers supported adults with various levels of intellectual disability. For all groups we invited individuals who were aged 18 or older had sufficient communication skills to make a decision and express their opinion (with or without accommodations) and who were in the greater Syracuse NY (United States) area. See Table 1 for additional information about participants. Table 1 Participant Demographic Information. Instruments We created a semi-structured based on the first author’s prior research and review of relevant literature. Using open-ended questions coupled with graphics we queried participants on their general views about participation of adults with intellectual disability in research as well as their perspectives on benefits harms safeguards respect and trust. We also asked about their views on how research studies are conducted including important topics to study the role of people who provide support to adults with intellectual disability recruitment decision making and dissemination. We asked each of the three participant groups the same questions with shifts in framing to reflect their position and used a moderator’s version of the guide with additional probes to foster deeper exploration of initial responses. We also asked participants to complete a to collect demographic information and we maintained throughout recruitment data collection and analysis. Procedures p35 We received human subjects’ approval for this study. GSK1292263 To promote accessibility and cultural sensitivity we created materials from those the first author had previously developed with people with developmental disabilities (Kidney & McDonald 2014 Nicolaidis et al. 2012 We partnered with The Self-Advocacy Association of New York State-Central Region to recruit participants sharing information about the study widely throughout the community via postal mailings emails (to individuals and listservs) social media newsletters posted flyers a project website and in-person meetings with and tablings at organizations groups and community events by or for adults with intellectual disability their families and/or service providers. We worked with adults with intellectual disability to address supports needed GSK1292263 to participate including individual planning of transportation and (if desired and for those with legal guardians) the involvement of another person as they learned more about the research and made their decision. We designed our consent or assent form to promote understanding by minimizing GSK1292263 text and using plain language and useful graphics and included a communication guide to provide a visual depiction of consent choices. We held individual consent meetings with adults with intellectual disability to foster individualized access to the information and time for decision making.