Community-based participatory research to improve alumni transition from an intensive research training program for historically underrepresented undergraduates.

Various initiatives for undergraduates from historically underrepresented backgrounds attempt to address disparities in the completion of science, technology, engineering, mathematics (STEM) degrees and the pursuit of careers in scientific research. Intensive research training programs for historically underrepresented undergraduates may include multiple components, such as authentic research experiences, advising and mentoring, supplemental curriculum, and financial assistance. Following comprehensive support during program participation, the post-program transition may present a vulnerable period in students' career trajectories. This study used a community-based participatory research (CBPR) approach to investigate the experiences of students completing an intensive research training program to understand and develop recommendations for the post-program transition process. As a team of program alumni, academic researchers, and program staff, we developed, conducted, and analyzed semi-structured, open-ended interviews of recent program alumni and students approaching program completion (n=11; 55% female, 55% non-White). Applying thematic analysis at semantic and latent levels through a critical paradigm revealed the transition as a bittersweet experience, with feelings of pride and accomplishment mixed with sadness and anxiety. Findings also suggested the transition is described as a narrative influenced by preceding program experiences and adaptations. Financial concerns were prominent, and specific barriers and facilitators of successful transition included: aligned mentoring, negotiation of continued research employment, consideration of culture, planning for next steps, and engagement with the scholar community. Collaboratively, we developed recommendations for program improvements potentially relevant to similarly intensive STEM diversity programs. We also highlight the value of a CBPR approach that includes students equitably as co-researchers in program research and evaluation.

Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults.

LAY ABSTRACT: Interventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits; (2) how confident they feel in managing their health and healthcare; and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient-provider communication; (5) reduced barriers to care; and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this sample. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults.

Early Assessment and Support Alliance Connections: Community-Based Participatory Research to Develop a Peer-based Early Psychosis Web Resource with Young Adults.

BACKGROUND: Young adults (YA) who have experienced early psychosis (EP) have valuable information about their recovery process yet are often left out of research. OBJECTIVES: We used a community-based participatory research (CBPR) approach in partnership with the Early Assessment and Support Alliance (EASA) EP program and Portland State University to develop a peer-driven, webbased, recovery resource. METHODS: We used our CBPR process to collaboratively develop the resource and conducted an iterative usability study to test and refine it. LESSONS LEARNED: The resource was well-received and accessible. YA partners emphasize the importance of being prepared to learn about research and one's self, being open to new experiences, and how being co-researchers can help with processing EP experiences for the benefit of one's self and peers. CONCLUSIONS: Peer involvement in intervention development may increase usability. It benefits YA and adult coresearchers. We strongly recommend including YA who have experienced EP as co-researchers.

"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. LAY SUMMARY: Why was this study done?: Autistic burnout is talked about a lot by autistic people but has not been formally addressed by researchers. It is an important issue for the autistic community because it is described as leading to distress; loss of work, school, health, and quality of life; and even suicidal behavior.What was the purpose of this study?: This study aimed to characterize autistic burnout, understand what it is like, what people think causes it, and what helps people recover from or prevent it. It is a first step in starting to understand autistic burnout well enough to address it.What did the researchers do?: Our research group-the Academic Autism Spectrum Partnership in Research and Education-used a community-based participatory research approach with the autistic community in all stages of the study. We analyzed 9 interviews from our study on employment, 10 interviews about autistic burnout, and 19 public Internet sources (five in-depth). We recruited in the United States by publicizing on social media, by word of mouth, and through community connections. When analyzing interviews, we took what people said at face value and in deeper social context, and looked for strong themes across data.What were the results of the study?: The primary characteristics of autistic burnout were chronic exhaustion, loss of skills, and reduced tolerance to stimulus. Participants 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. From this we created a definition:Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.Participants described negative impacts on their lives, including health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people. People had ideas for recovering from autistic burnout including acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking.How do these findings add to what was already known?: We now have data that autistic burnout refers to a clear set of characteristics, and is different from workplace burnout and clinical depression. We have the start of a model for why autistic burnout might happen. We know that people have been able to recover from autistic burnout and have some insights into how.What are the potential weaknesses in the study?: This was a small exploratory study with a convenience sample. Although we were able to bring in some diversity by using three data sources, future work would benefit from interviewing a wider range of participants, especially those who are not white, have higher support needs, and have either very high or very low educational attainment. More research is needed to understand how to measure, prevent, and treat autistic burnout.How will these findings help autistic adults now or in the future?: These findings validate the experience of autistic adults. Understanding autistic burnout could lead to ways to help relieve it or prevent it. The findings may help therapists and other practitioners recognize autistic burnout, and the potential dangers of teaching autistic people to mask autistic traits. Suicide prevention programs should consider the potential role of burnout. These findings highlight the need to reduce discrimination and stigma around autism and disability.