Katherine E. McDonald

Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates

Background: Most community-based participatory research (CBPR) projects involve local communities defined by race, ethnicity, geography, or occupation. Autistic self-advocates, a geographically dispersed community defined by disability, experience issues in research similar to those expressed by more traditional minorities. Objectives: We sought to build an academic–community partnership that uses CBPR to improve the lives of people on the autistic spectrum. Methods: The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) includes representatives from academic, self-advocate, family, and professional communities. We are currently conducting several studies about the health care experiences and well-being of autistic adults. Lessons Learned: We have learned a number of strategies that integrate technology and process to successfully equalize power and accommodate diverse communication and collaboration needs. Conclusions: CBPR can be conducted successfully with autistic self-advocates. Our strategies may be useful to other CBPR partnerships, especially ones that cannot meet in person or that include people with diverse communication needs.

“Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum:

Our objective was to obtain an in-depth understanding of autistic adults’ experiences with healthcare and their recommendations for improving care. Our academic–community partnership used a community-based participatory research approach to conduct semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Participants identified patient-level, autism-related factors that impact healthcare interactions, including verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical non-verbal communication, and challenges with organization. However, the success of healthcare interactions largely depended on the interplay between patient- and provider-level factors, as well as the larger context in which patients were receiving care. Provider-level factors included providers’ knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters. System-level factors included the availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism. Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination.

You say you want a revolution: An empirical study of community-based participatory research with people with developmental disabilities

BACKGROUNDnCommunity-based participatory research (CBPR) seeks to improve the responsiveness of science to community priorities and foster positive community change through equitable research collaborations between scientists and community members. CBPR resonates with disability rights principles, and is increasingly being used in disability research, though there are few studies of its use with people with developmental disabilities.nnnOBJECTIVEnWe conducted a prospective qualitative study to explore the experiences of scientists and community members in a multi-year CBPR project with people with developmental disabilities.nnnMETHODSnOver the four project years, we conducted periodic individual interviews and focus groups with members of the CBPR project, and used an inductive thematic analysis to identify and develop relational themes.nnnRESULTSnWe identified factors that contributed to the success of the CBPR project and factors that presented challenges to the CBPR project. We also identified potential individual, project, and societal level impacts of the CBPR project.nnnCONCLUSIONSnCBPR with people with developmental disabilities is possible and fruitful, and can serve as an effective model for the full inclusion of people with developmental disabilities in science and society at large.

“You Can’t be Cold and Scientific” Community Views on Ethical Issues in Intellectual Disability Research

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.

Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities.

Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist–Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (nu2009=u200974)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (nu2009=u200967)), concern about cost (30% (nu2009=u200962)), facilities causing sensory issues 30% ((nu2009=u200962)), and difficulty communicating with providers (29% (nu2009=u200961)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2–0.8, pu2009<u20090.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.

The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers

ABSTRACTBackgroundThe healthcare system is ill-equipped to meet the needs of adults on the autism spectrum.ObjectiveOur goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults.DesignToolkit development included cognitive interviewing and test–retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison.ParticipantsA total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States.InterventionsThe AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)—a tool that allows patients to create a personalized accommodations report for their PCP—and general healthcare- and autism-related information, worksheets, checklists, and resources for patients and healthcare providers.Main MeasuresSatisfaction with patient–provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit’s usability and utility; responses to open-ended questions.Key ResultsPreliminary testing of the AHAT demonstrated strong content validity and adequate test–retest stability. Almost all patient participants (>94xa0%) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, pu2009<u20090.0001), healthcare self-efficacy increased (from 37.9 to 39.4, pu2009=u20090.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, pu2009=u20090.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97xa0%), rated it as moderately or very useful (82xa0%), and would recommend it to other patients (87xa0%).ConclusionsThe CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient–provider communication.

Is Safety in the Eye of the Beholder? Safeguards in Research With 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.

Intellectual disability and faith communities: perspectives of Catholic religious leaders

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.

Is It Worth It? Benefits in 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.

What's the harm? Harms in research with adults with intellectual disability

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.