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Background: In recognition of their status as a health disparities population, there is growing emphasis on conducting research inclusive of adults with intellectual disability to generate new knowledge and opportunities to improve health and equity. Yet they are often excluded from research, and human research participant protection experts and researchers lack agreement on effective consent protocols for their inclusion., Objective: We sought to identify approaches to consent in US-based social-behavioral research with adults with intellectual disability., Methods: We conducted a systematic review on approaches to self-consent with adults with intellectual disability published between 2009 and 2023, identified via searching eight databases and reference list hand searches. We identified 13 manuscripts and conducted a thematic analysis., Results: Our analysis identified themes related to guiding principles, strategies to enhance informed and voluntary consent, approaches to consent capacity, involving individuals subject to guardianship, and strategies for expressing decisions and enhancing ongoing decisions., Conclusions: Manuscripts largely reflected an emphasis on identifying approaches to consent that reflect disability rights principles to promote the right to be included and make one's own decisions based on assessment of relevant information, risks and benefits, and to employ reasonable modifications to achieve inclusion. To avoid the risks of exclusion and advance the responsible inclusion of adults with intellectual disability, we make recommendations to align consent approaches anchored in contemporary thinking about human research participant protections, including through integration with disability rights., Competing Interests: Declaration of competing interest The authors have no conflicts of interest to disclose., (Copyright © 2024 Elsevier Inc. All rights reserved.)

People living with physical, sensory, intellectual, and/or developmental disabilities experience complex social, environmental, political, and cultural challenges along with stigma and marginalization in education, employment, and community life. These multiple and complex barriers often hinder their full and effective participation in society. In this reflection, we curated articles on physical, sensory, intellectual, and/or developmental disabilities published in the American Journal of Community Psychology from 1973 to 2022. We reviewed titles and abstracts to identify themes that grouped manuscripts in relevant community psychology core concepts and values. From our analysis, five themes emerged: (a) promoting empowerment and advocacy; (b) promoting organizations and settings that support people with disabilities; (c) including people with disabilities in knowledge production; (d) promoting social justice in disability research, and (e) promoting support networks of families of people with disabilities. We conclude this reflection with a discussion of recommendations for future research, practice, and a call to action., (© 2023 The Authors. American Journal of Community Psychology published by Wiley Periodicals LLC on behalf of Society for Community Research and Action.)

Provoked by decades of grassroots activism, anti-ableist work is underway to advance disability rights. Intellectual disability (ID) researchers can integrate these social changes into their work by interrogating and transforming the beliefs and practices that underpin ID research. We share actionable ideas to foster anti-ableism and allyship in ID research. These include: (1) Learn from and nurture long-term, mutual relationships with people with ID; (2) Amplify the voices of people with ID in institutional structures that influence research; (3) Infuse anti-ableist frameworks into our own research; and (4) Embody a career-long commitment to disability rights, reflexive practice, and growth., (©AAIDD.)

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., (© 2021 John Wiley & Sons Ltd.)

Background: This study examines recent trends in the age-at-death disparity between adults with and without intellectual and/or developmental disabilities in the United States., Method: Data were from the 2005-2017 U.S. death certificates. Average age at death was compared between adults whose death certificate did or did not report an intellectual and/or developmental disability., Results: Age at death increased minimally for adults without, but markedly for adults with intellectual and/or developmental disabilities. As a result, the age-at-death disparity decreased: 2.2 years between adults with/without intellectual disability; 1.9 years between adults with/without Down syndrome; 2.7 years between adults with/without cerebral palsy; and 5.1 years between adults with/without rare developmental disabilities., Conclusion: Evidence from this study demonstrates that the age-at-death disparity between adults who did or did not have an intellectual and/or developmental disability reported on their death certificate continues to decrease, but the magnitude of the remaining disparity varied considerably by type of disability., (© 2020 John Wiley & Sons Ltd.)

Background: People with intellectual and developmental disabilities (IDD) may be at higher risk of severe outcomes from COVID-19., Objective: To describe COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State., Methods: Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living in residential group homes and New York State through May 28, 2020., Results: People with IDD living in residential group homes were at greater risk of severe COVID-19 outcomes: case rates - 7,841 per 100,000 for people with IDD compared to 1,910 for New York State; case-fatality - 15.0% for people with IDD compared to 7.9% for New York State; and mortality rate - 1,175 per 100,000 for people with IDD compared to 151 per 100,000 for New York State. Differences in cases and mortality rate were confirmed across regions of the state, but case-fatality rate was only higher for people with IDD in and around the New York City region., Conclusions: COVID-19 appears to present a greater risk to people with IDD, especially those living in congregate settings. A full understanding of the severity of this risk will not be possible until US states begin publicly sharing all relevant data they have on COVID-19 outcomes among this population., Competing Interests: Declaration of competing interest To the best of our knowledge, no conflict of interest, financial or other, exists., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Background: Young adults with intellectual/developmental disabilities and co-occurring mental health conditions (IDD-MH) experience significant mental health disparities. Barriers to services include transportation and stigma associated with services. Peer mentoring (PM) may be one solution to these barriers., Methods: We conducted exploratory research to develop a PM intervention for young adults with IDD-MH by partnering with 3 young adults with IDD-MH and a seven-member advisory board. In addition, we conducted focus groups with mental health clinicians (n = 10), peer providers (n = 9), and transition specialists (n = 20) to identify the desired PM outcomes and features and content that may facilitate these outcomes., Results: Prioritized outcome: identifying and utilizing leisure activities as coping strategies. PM features: mentors should use relationship- and outcome-driven actions to operationalize a mentee-centred approach. Features and content considerations: safety, mentor matching, degree of structure, mentor training and support, and collaboration with mentees' support teams., Discussion: Findings are aligned with previous research on PM., (© 2020 John Wiley & Sons Ltd.)

People with intellectual disability experience disproportionately high rates of interpersonal violence (IPV) due, in part, to disability-related risks that often can be minimized through targeted intervention. In this article, we describe using an academic and community participatory research approach to develop and test the feasibility of an accessible IPV prevention program for people with intellectual disability. The Safety Class , which is an interactive, structured, eight-session, weekly face-to-face group program, was found feasible for implementation in an efficacy study. Working in partnership with the intellectual disability community through all phases of the project helps ensure the relevance, inclusion, and accessibility of The Safety Class .

Using a participatory research approach, we enlisted 12 U.S. Centers for Independent Living (CILs) to recruit and enroll 170 adults with intellectual disability (ID) to be randomized to either The Safety Class, an abuse prevention group program, or usual care. Participants were asked to complete pre, post, and 3-month follow-up questionnaires. CIL staff members facilitated the eight-session, interactive program. Quantitative and qualitative findings suggest that participation in a brief safety program may improve safety protective factors among men and women with ID. The Safety Class serves as one model for delivering an abuse prevention and education intervention to adults with significant safety needs but extremely limited access to relevant community resources., (©AAIDD.)

People with intellectual disability (ID) are increasingly involved in stakeholder-engaged research, such as "inclusive research" (IR). To understand the processes that foster and maintain IR with individuals with ID, we used a narrative interview approach with co-researchers with ID ( n = 6) and academic researchers ( n = 8). We analyzed the data using grounded theory principles. We then developed a model describing how contextual factors and team-level factors and processes coalesce to foster and maintain IR collaborations. We observed that team members' values and characteristics are foundational to IR and drive a commitment to accessibility. Contextual factors, including funding and partnership duration, influence teams' processes and structures. These processes and structures influence the extent to which co-researchers perceive the IR team to be cofacilitated or academic-facilitated. Co-researcher involvement is partially maintained by perceived personal and societal benefits. Optimizing the relationship between these factors may support involvement of people with ID in stakeholder-engaged research projects.

Background: Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community., Objective/hypothesis: We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views., Methods: We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability., Results: We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity., Conclusions: Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability.

Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and institutional review board members. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability.

Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public's views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability. We found substantial support for their inclusion, particularly given the possibility of benefits to adults with intellectual disability, researchers, and society. We also found concerns for potential harm and differing ideas on how to promote safety. Our findings emphasize the importance of their inclusion in research, and the need for policies and practices that promote respect and safety., (© The Author(s) 2015.)

The acceptance and inclusion of persons with intellectual disability can vary across cultures, and understanding attitudes can provide insight into such variation. To our knowledge, no previous study has explored attitudes toward people with intellectual disability among Pakistani community members and disability service providers. We administered the Community Living Attitudes Scale (Henry et al., 1996), a measure of attitudes toward people with intellectual disability developed in the United States, to 262 community members and 190 disability service providers in Pakistan. Confirmatory factor analysis found a 4-factor solution (empowerment, similarity, exclusion, and sheltering) fit the Pakistani sample. More positive attitudes were observed in staff serving people with intellectual disability, females, Christians, Hindus, Sunnis, and people with greater education. We discuss implications for research, theory, and practice.

Researchers and Institutional Review Board (IRB) members' attitudes influence scientific knowledge about individuals with intellectual disability. We recruited 260 intellectual disability researchers and IRB members to develop a measure of attitudes toward the research participation of adults with intellectual disability, the Participation in Research Attitude Scale. Findings suggest three conceptual domains: Opportunity and Choice, Help in Decision Making, and Beneficence. We also examined individual differences in attitudes and the relationships between general and specific attitudes. In general, intellectual disability researchers and those with closer relationships to individuals with disabilities had attitudes consistent with disability-rights principles. Some dimensions of global attitudes toward adults with intellectual disability predictedmore specific attitudes toward their research participation. Implications are discussed.

How do those in power decide to include and exclude those at the margins from community life? We used simulated review of research vignettes to examine how researchers and members of Institutional Review Boards make decisions concerning the research participation of adults with and without intellectual disabilities. Results indicate that decision-makers are influenced by the disability status of the sample, characteristics of the research in which they are engaged, and their attitudes toward the research participation of adults with intellectual disabilities as well as their own relationship to the research process. For example, decision-makers may create situations that limit the self-determination of adults with intellectual disabilities and adults without disabilities within the research context, particularly when the research poses some risk of harm to participants. Implications for theory, action and research are explored.

Faith communities create community and are important to many individuals with intellectual disability. However, relatively little is known about how intellectual disability is construed among faith leaders and the inclusion of people with intellectual disability in faith communities. To address these gaps in knowledge, we interviewed 12 Catholic priests, parochial vicars, and deacons to explore: their experiences with individuals with intellectual disability; their beliefs towards the involvement of individuals with intellectual disability within faith communities; and how religion informs their understanding of intellectual disability. We identified five religiously-anchored narratives of intellectual disability, and explore implications for individuals with intellectual disability and faith communities. [ABSTRACT FROM PUBLISHER]

Action research-research collaborations between professional researchers and community members to address community concerns-has become increasingly popular in developmental disability research. Advocates of these approaches argue that they reflect the value of including people with disabilities in matters that affect them and generate benefits for people with disabilities and for research. However, it is not clear how well action research with adults with developmental disabilities reflect core action research principles. The authors identified 21 action research projects with adults with developmental disabilities in English-language referred journals. The authors found that the majority of these projects took place in the UK or the United States, with individuals with intellectual disabilities, were published in or after 2005, and used qualitative methods to examine research aims on social issues important to adults with developmental disabilities. They reviewed common challenges, facilitators, and indicators of success described by authors and found that relatively few projects can be classified as high on the continuum of shared power. Based on these findings, the authors recommended a continued focus on the accurate understanding and application of action research models, building our knowledge of and evidence base for effective tools, strategies, resources, and personal characteristics for action research with adults with developmental disabilities, adequately funding this research, and pursuing a broader array of research methods. The projects studied herein provide evidence for the promise and possibility of action research with adults with developmental disabilities. [ABSTRACT FROM AUTHOR]

To identify potential differences in racial-ethnic inequities in mortality between adults with/without intellectual and developmental disability, we compared patterns in age at death by race-ethnic status among adults who did/did not have intellectual and developmental disability reported on their death certificate in the United States. Data were from the 2005-2017 U.S. Multiple Cause-of-Death Mortality files. Average age at death by racial-ethnic status was compared between adults, age 18 and older, with/without different types of intellectual and developmental disability reported on their death certificate (N = 32,760,741). A multiple descent pattern was observed among adults without intellectual or developmental disability, with age at death highest among Whites, followed by Asians, Hispanics and Blacks, then American Indians. In contrast, a bifurcated pattern was observed among adults with intellectual disability, with age at death highest among Whites, but lower and similar among all racial-ethnic minority groups. The severity of racial-ethnic inequities in age at death was most pronounced among adults with cerebral palsy. Policy makers and public health experts should be aware that racial-ethnic inequities are different for adults with intellectual and developmental disability - all minorities with intellectual and developmental disability are at greater risk of premature death than their White counterparts. [ABSTRACT FROM AUTHOR]