Participatory Action Research: Science and Social Change

Participatory Action Research (PAR) is a general collaborative approach to inquiry that includes research subjects as members of the research team. Useful in any setting involving groups of people, PAR has revolutionized research with minority communities. Some flavors of PAR, such as Community-Based Participatory Research (CBPR) have been developed to address issues of power and privilege, to change dynamics between science, society, and minorities, and to enable and encourage systems change. This talk discusses the theory and practice of PAR as a research approach, drawing from real world examples in health sciences research with minority communities defined by disability or race.https://pdxscholar.library.pdx.edu/systems_science_seminar_series/1017/thumbnail.jp

Community-Based Participatory Research with Communities Defined by Race, Ethnicity, and Disability: Translating Theory to Practice

Community-based participatory research (CBPR) is an increasingly popular participatory research approach where community members and academics collaborate as equal partners to conduct research for improving health and wellbeing through action (Isreal et al., 2003; Wallerstein and Duran, 2003). It is a branch of action research in the tradition of emancipatory practice. CBPR grew within the health sciences in the 1990s in response to a number of issues with mainstream health science research and minority communities

Intersections of Critical Systems Thinking and Community Based Participatory Research in Developing a Web Site for Autistic Adults

People with disabilities, including those on the autism spectrum, comprise the world\u27s largest minority and experience significant inequities in Internet use. Existing standards for accessible web sites are necessary but not sufficient without the direct engagement of end users in identifying access needs. Yet little is known about methods for effective engagement, and there are no systematically derived Web accessibility guidelines for autistic end users. Here I explore a hybrid approach to direct engagement using critical systems thinking (CST) and community based participatory research (CBPR) during the co-development of a healthcare-focused web site by the Academic Autism Spectrum Partnership in Research and Education (AASPIRE). I explore these ideas on three levels: theory, practice, and critical self-reflection. On the theory level, I examine the common philosophical and historical roots of CST and CBPR, ways in which they intersect and complement, and propose the hybrid approach exemplified by AASPIRE. On the practice level, I explore our web site development process and evaluate the accessibility, usability, and acceptability of the web site for autistic end users; from that work, comes a set of recommendations for working with people with disabilities in technology development and a set of accessibility guidelines for autistic end users. On the critical self-reflection level, I inquire into my own experiences as an insider-researcher during the web site development. I then synthesize the levels to evaluate whether or not taking a hybrid CST/CBPR approach to web development was effective, as indicated by the team\u27s ability to function as an emancipatory learning organization (an indicator of effective systems thinking on an organizational level), and the overall usability and accessibility of the web site. The result of the synthesis suggests a hybrid CST/CBPR approach was effective. Implications of this work include innovations in CST methods for operationalizing its commitment to human emancipation, potential for drawing a more ideologically-aligned systems thinking literature into the domain of CBPR, a means for individuals wishing to create a more power-balanced learning organization, innovations around including people with disabilities in research and technology development, more accessible web sites for people on the autism spectrum, and a potential small shift of dominant discourse around autism, disability, and the value of insider-researchers over time

Development of the AASPIRE web accessibility guidelines for autistic web users

Websites figure predominantly in everyday life. However, many websites remain inaccessible to autistic people, and existing efforts to improve accessibility are in early stages, do not directly include autistic users in their development, or have not been empirically evaluated. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) used a community-based participatory research approach to create a website to improve health care access for autistic adults. We used the creation of that website as a “living laboratory” to develop the AASPIRE Web Accessibility Guidelines for Autistic Web Users. Our guidelines are grounded in accessibility theory, had autistic end-user involvement at all stages, and were empirically evaluated through a usability study and evaluation surveys. We incorporated what we learned into the design of the website, and compiled the accessibility information into a set of guidelines. The guidelines offer recommendations for increasing the physical, intellectual, and social acceptability of websites for use by autistic adults. In the evaluation of the website by 170 autistic end users, nearly all indicated it was easy to use (97%), easy to understand (95%), important (97%), and useful (96%). Ninety-two percent would recommend it to a friend, and 95% would recommend it to a health care provider. There were no significant associations between usability or understandability and education level, receipt of help using the site, browser type (e.g., IE or Safari), or device type (e.g., PC or tablet). We recommend using the guidelines to improve website accessibility for autistic Internet users

“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 (CBPR) 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 on 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

“Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: defining autistic burnout

Background: Although autistic adults often discuss experiencing ‘‘autistic burnout’’ and attribute serious negative outcomes to it, the concept is almost completely absent from the academic and clinical literature. Methods: We used a community-based participatory research approach to conduct a thematic analysis of 19 interviews and 19 public Internet sources to understand and characterize autistic burnout. Interview participants were autistic adults who identified as having been professionally diagnosed with an autism spectrum condition. We conducted a thematic analysis, using a hybrid inductive–deductive approach, at semantic and latent levels, through a critical paradigm. We addressed trustworthiness through multiple coders, peer debriefing, and examination of contradictions. Results: Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout. Conclusions: Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability

Mindshift in autism: a call to professionals in research, clinical, and educational settings

Autistic people often have poor outcomes over the life course, including in health, education, employment, and community inclusion. Many professionals working with Autistic adults in research, clinical, and educational settings devote their careers to trying to improve such outcomes. However, we maintain that real progress cannot happen without a fundamental mindshift. The status quo for professionals is to view autism as an illness. Instead, the neurodiversity movement encourages us to value and embrace autism as an aspect of human diversity and asks us to view Autistic people as a marginalized group that experiences significant disparities. While some professionals may be adopting language and concepts from the neurodiversity movement, we argue that making this mindshift fundamentally changes our practice across research, clinical, and educational settings. In this perspective, we call on professionals to embrace this mindshift to reduce discrimination and stigma, halt the spread of harmful ideologies, and help Autistic adults live fulfilling lives

Community-Based Participatory Research to Adapt Health Measures for Use by People with Developmental Disabilities

Background: People with developmental disabilities (DD) are often not included as participants in research owing to a variety of ethical and practical challenges. One major challenge is that traditional measurements instruments may not be accessible to people with DD. Participatory research approaches promise to increase the participation of marginalized communities in research, but few partnerships have successfully used such approaches to conduct quantitative studies people with DD. Objective: To use a community-based participatory search (CBPR) approach to create an accessible, computer-assisted survey about violence and health in people with DD, and to psychometrically test adapted health instruments. Methods: Our academic-community partnership, composed of academic researchers, people with DD, and supporters, collaboratively selected and modified data collection instruments, conducted cognitive interviews and pilot tests, and then administered the full survey to 350 people with DD. Results: Although team members sometimes had opposing accommodation needs and adaption recommendations, academic and community partners were able to work together successfully to adapt instruments to be accessible to participants with a wide range of DD. Results suggest the adapted health instruments had strong content validity and all but one had good to excellent internal consistency reliability (alpha, 0.81-0.94). The majority of participants (75%) responded that all or most of the questions were easy to understand. Conclusions: Researchers should consider using participatory approaches to adapting instruments so people with DD can be validly included in research