Expertise Gained During the COVID-19 Pandemic: Exploring Ethical Implications Through Practitioners' Narratives.

The COVID-19 pandemic necessitated a transition to telehealth. Research supports the use of telehealth; however, there is a paucity of literature on the ethical considerations of this shift. This study explored ethics through narratives of practitioners' lived experiences of transitioning to telehealth. Semi-structured interviews were conducted virtually with 10 pediatric health care professionals. Transcripts were analyzed from a narrative phenomenological perspective. Discussed themes include responding to the rapid redirection, collaborating with colleagues and caregivers, applying therapeutic use of self, and evolving pragmatic clinical reasoning. Transitioning to telehealth resulted in ethical dilemmas pertaining to clients and practitioners. The need for additional support was salient to ensure clients received beneficial services that would not cause harm (non-maleficence). Communities of practice formed organically as forums to explore strategies for sharing comprehensive and equitable information (veracity and justice). Knowledge generated through providers' experiences may inform future guidelines on service delivery transitions.

Knowledge Gained during the COVID-19 Pandemic: Exploring Ethical Principles in Stories Shared by PractitionersDuring the COVID-19 pandemic, practitioners changed from largely in-person to telehealth (e.g., Zoom) service delivery models. Past research on telehealth has reported positive and negative effects but has not fully explored the ethical considerations. To understand how practitioners were able to make this transition and the ethical implications, we interviewed 10 practitioners about doing telehealth sessions. We analyzed the data using a framework (narrative phenomenology) to guide our exploration into the conflict, setting, and characters in the stories shared by providers. The stories were organized into four themes: responding to the rapid redirection, collaborating with colleagues and caregivers, applying therapeutic use of self, and evolving pragmatic clinical reasoning. Practitioners said they needed more training and support during changes in service delivery. They worked together to share resources and new information. This helped to ensure high-quality services that followed ethical principles (doing the right thing). The information learned here may inform guidelines for transitioning between service delivery models.

Machine Learning Prediction of Autism Spectrum Disorder Through Linking Mothers' and Children's Electronic Health Record Data.

Autism spectrum disorder (ASD) is a neurodevelopmental disorder typically diagnosed in children. Early detection of ASD, particularly in girls who are often diagnosed late, can aid long-term development for children. We aimed to develop machine learning models for predicting ASD diagnosis in children, both boys and girls, using child-mother linked electronic health records (EHRs) data from a large clinical research network. Model features were children and mothers' risk factors in EHRs, including maternal health factors. We tested XGBoost and logistic regression with Random Oversampling (ROS) and Random Undersampling (RUS) to address imbalanced data. Logistic regression with RUS considering a three-year observation window for children's risk factors achieved the best performance for predicting ASD among the overall study population (AUROC = 0.798), boys (AUROC = 0.786), and girls (AUROC = 0.791). We calculated SHAP values to quantify the impacts of important clinical and sociodemographic risk factors.

Pediatricians' role in healthcare for Latino autistic children: Shared decision-making versus "You've got to do everything on your own".

LAY ABSTRACT: Latino parents may choose to use complementary health approaches, such as vitamins, supplements, and special diets, for their autistic children. However, they might not tell their pediatrician about their complementary health approach use if they worry that the pediatrician will disapprove or judge them. This fear, along with pediatricians' lack of autism knowledge, creates barriers to "shared decision-making" between parents and pediatricians. Shared decision-making is a process where families and healthcare providers collaborate and exchange information in order to come to an agreement about treatment options. In our qualitative study with 12 bilingual Latino families of autistic children, we interviewed and observed families to learn about their experiences with both conventional healthcare (their pediatrician) and complementary health approaches. Our study results describe the parents' different pathways to an autism assessment, a process that is sometimes called the "diagnostic odyssey." The parents reported that conventional healthcare met their needs for their child's physical health but not for their child's developmental challenges. The parents who used complementary health approaches for their autistic children were more frustrated about a lack of autism information from pediatricians than those who did not use complementary health approaches. Finally, we describe two examples of successful shared decision-making between parents and pediatricians. We conclude that pediatricians who are able to talk about complementary health approaches with Latino families may help to facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.

Challenges and Facilitators to Telehealth Occupational Therapy for Autistic Children During COVID-19.

Pre-pandemic, telehealth occupational therapy (OT) for autistic children appeared promising, but research was limited. The pandemic provided a unique opportunity to investigate how clinics transitioned to telehealth. The purpose of this study was to examine barriers and facilitators that influenced delivery of OT services through telehealth for autistic children during the pandemic. We conducted semi-structured qualitative interviews with 13 participants (three administrators, six OTs, and four parents of autistic children) at three Los Angeles area clinics over a 7-month period. We used narrative and thematic analysis to identify four themes. We identified (a) Challenges and (b) Facilitators to Conducting Telehealth OT, including practical strategies for successful facilitation, and (c) Negative and (d) Positive Outcomes of Conducting Telehealth OT. As telehealth will likely remain a viable means of OT service delivery in the future, our findings provide insight into ways that it can be improved and sustained.

Inside an Occupational Therapy-Disability Community Partnership to Promote Health Management: Ethnography of a Research Collaboration.

IMPORTANCE: Disability studies-informed occupational therapy is predicated on full and equal partnerships among occupational therapy practitioners, researchers, and disability communities. Community-based participatory research (CBPR) is an approach to research that aligns with this vision yet is not without challenges. Understanding the tensions that arise from stakeholders' perspectives and priorities is critical for promoting collaboration between occupational therapy professionals and disability community partners. OBJECTIVE: To understand the group dynamics and relational processes of a CPBR team in the context of an intervention development study focused on health management for people with disabilities (PWD). DESIGN: This 9-mo ethnographic study included semistructured interviews and participant observation. Data were analyzed thematically. SETTING: Community-based multiagency collaborative. PARTICIPANTS: Nine participants (6 academic team members, 4 of whom were trained as occupational therapists; 2 disability partners; and 1 managed-care organization representative) took part. Three participants self-identified as PWD. FINDINGS: CBPR processes, although productive, were fraught with challenges. Team members navigated competing priorities, varying power dynamics, and multifaceted roles and identities. Flexibility was needed to address diverse priorities, respond to unexpected challenges, and facilitate the project's success. CONCLUSIONS AND RELEVANCE: Deep commitment to a shared goal of health care justice for PWD and team members' willingness to address tensions promoted successful collaboration. Intentional relationship building is needed for occupational therapy researchers to collaborate with members of disability communities as equal partners. What This Article Adds: Disability studies-informed occupational therapy research demands that team members intentionally nurture equitable relationships through shared governance, clear communication, and recognition of the fluid nature of power dynamics.

Sex Differences in Co-occurring Conditions Among Autistic Children and Youth in Florida: A Retrospective Cohort Study (2012-2019).

Autistic children have a high prevalence of co-occurring mental health, developmental/behavioral, and medical conditions, but research on sex/gender differences has been mixed. We used Florida healthcare claims data to characterize sex differences (female/male) in co-occurring conditions among autistic children ages 1-21 (N = 83,500). After adjusting for age, race, ethnicity, urbanicity, and insurance, autistic girls had significantly higher odds of anxiety disorders, mood disorders, intellectual disability, developmental disorders, epilepsy, metabolic disorders, gastrointestinal disorders, and sleep disorders compared to autistic boys. Autistic girls had significantly lower odds of ADHD. The findings contribute to the growing body of research on the unique healthcare needs of autistic girls.

"Starting to Live a Life": Understanding Full Participation for People With Disabilities After Institutionalization.

IMPORTANCE: A key objective of the Americans With Disabilities Act of 1990 (ADA) is community integration; yet, nearly 30 yr later, little is known about the participation of people with disabilities who transition from institutions to the community. OBJECTIVE: To understand how people with disabilities describe full participation after transitioning from an institution to the community and to identify environmental barriers and facilitators to participation during and after this transition. DESIGN: The ADA-Participatory Action Research Consortium (ADA-PARC), a collaboration among researchers, people with disabilities, and community organizations, is implementing a multimethod, participatory action research study of participation among people with disabilities posttransition. This article presents qualitative findings from semistructured interviews collected as part of the larger ADA-PARC project. SETTING: ADA-PARC community partners across the United States. PARTICIPANTS: One hundred fifty-three adults with disabilities. OUTCOMES AND MEASURES: We used a semistructured interview guide to ask participants about their experiences during and after transition to the community. RESULTS: We identified four themes: (1) the process of transition as ongoing rather than a single event, (2) access to everyday occupations as full participation and what fully represents "living a life," (3) environmental barriers to participation, and (4) social identity as participation as the transformative process of moving from the disempowering isolation of the institution to being integrated into the community. CONCLUSIONS AND RELEVANCE: As people with disabilities transition into community settings, they require ongoing supports to facilitate their full, long-term participation. WHAT THIS ARTICLE ADDS: People with disabilities reported that transitioning from institutions to the community was itself not enough to support their full community participation; rather, they viewed transition as an ongoing process, and they needed services and supports to fully participate. Occupational therapy practitioners working in institutional and community settings can partner with local disability advocacy communities to support their clients' sense of identity and self-confidence during and after transition to the community.

Characterizing Enrollment in Observational Studies of Duchenne Muscular Dystrophy by Race and Ethnicity.

Observational research benefits from inclusion of diverse cohorts. To characterize racial and ethnic diversity in observational and natural history research studies of Duchenne muscular dystrophy (DMD), highly cited and influential observational studies were identified. Fourteen United States-based articles were included. All studies cited >70% White participants with the majority having few racial minority participants. Enrollment of Black/African American individuals was particularly limited (<5% in all but one study), and Hispanic/Latino participants ranged from 3.3- 26.5% of cohorts. These results suggest a need for effective strategies to recruit, enroll, and retain racially and ethnically diverse populations into observational research in DMD.

Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults.

While there is emerging evidence on the prevalence of physical and mental health conditions among autistic adults, less is known about this population's needs during older adulthood (aged 65+). We conducted a cross-sectional retrospective cohort study of 2016-2017 Medicare data to compare the prevalence of physical and mental health conditions in a national sample of autistic older adults (N = 4685) to a matched population comparison (N = 46,850) cohort. Autistic older adults had significantly greater odds of nearly all physical health conditions including epilepsy (odds ratio = 18.9; 95% confidence interval = 17.2-20.7), Parkinson's disease (odds ratio = 6.1; 95% confidence interval = 5.3-7.0), and gastrointestinal conditions (odds ratio = 5.2; 95% confidence interval = 4.9-5.5). Most mental health conditions were more common among autistic older adults, including schizophrenia and psychotic disorders (odds ratio = 25.3; 95% confidence interval = 22.4-28.7), attention deficit disorders (odds ratio = 24.4; 95% confidence interval = 16.2-31.0), personality disorders (odds ratio = 24.1; 95% confidence interval = 17.8-32.5), and suicidality or self-inflicted injury (odds ratio = 11.1; 95% confidence interval = 8.9-13.8). Health conditions commonly associated with advanced age in the general population (e.g. osteoporosis, cognitive disorders, heart disease, cancer, cerebrovascular disease, osteoarthritis) were also significantly more common among autistic older adults. By highlighting the significant physical and mental health needs for which autistic older adults require care, our findings can inform healthcare systems, healthcare providers, and public health initiatives seeking to promote well-being in this growing population.

Understanding self-determination as a crucial component in promoting the distinct value of occupational therapy in post-secondary transition planning.

School-based occupational therapists are well-equipped to prepare adolescents to transition from the education system to work and live in their communities, but they report challenges in securing their place on post-secondary transition planning teams. We argue that occupational therapists' efforts to advocate for their role in post-secondary transition could be strengthened by a deeper engagement with what is considered 'best practice' in transition planning: improving students' ability and opportunity to exercise self-determination. In this commentary, we review the self-determination evidence-base; identify congruence between the underlying philosophies of self-determination and occupational therapy; and highlight gaps in existing self-determination models that occupational therapists are uniquely posed to fill by focusing on self-determination as they support transition age students.

Using Photovoice as a participatory method to identify and strategize community participation with people with intellectual and developmental disabilities.

BACKGROUND: Adults with intellectual and developmental disabilities (I/DD) experience barriers to community participation, yet their insider experiences of environmental barriers and supports to participation are largely absent from the literature. AIM/OBJECTIVE: The aims of this research were to evaluate Photovoice as a participatory research method, examine environmental barriers and supports to community participation, and develop strategies to support self-determination and community participation for and with people with I/DD. MATERIAL AND METHOD: This study utilized a participatory action research (PAR) approach in which participants used Photovoice during interviews and audits of participation environments to identify high interest participation activities and document supports and barriers in these environments. Data analysis utilized an iterative, participatory approach in which researchers and participants teamed up to select, contextualize, and codify the data. Thematic analyses involved both inductive and realist approaches. RESULTS/FINDINGS: Participants included 146 community-dwelling adults with I/DD from three U.S. urban sites. We present a conceptual model of nine themes at microsystem, mesosystem, exosystem, macrosystem, and chronosystem environmental levels. CONCLUSIONS: Using Photovoice as a participatory method to strategize community participation can help ground systems change efforts in the voices of people with I/DD. SIGNIFICANCE: By including people with I/DD in conversations that concern them, researchers and practitioners can support this population in ways that they find meaningful.

Understanding parents' concerns about their children with autism taking public school transportation in Los Angeles County.

There are a number of recent US news media reports of children and youth with autism becoming lost, injured, or even dying while taking public school transportation, yet research on this problem is scarce. This ethnographic study examines the experiences of 14 parents whose children with autism take public school transportation in Los Angeles County. We present two case studies of children with autism being "lost" while in transit from school to home on the bus to (1) describe how the situation was experienced, responded to, and managed by the parents; (2) consider three interrelated themes that emerged from interviews with 14 parents, related to children's safety, independence, and participation, across multiple contexts and analytic levels; and (3) discuss the findings in relation to US news media reports of incidents involving children with autism on school buses to identify specific weaknesses in school transportation infrastructure, particularly in the context of privatization, that create conditions in which children with autism can "fall through the cracks" in potentially life-threatening ways. We argue that there is a critical need to address transportation accessibility for individuals on the autism spectrum to ensure their safety and support their independence and community participation.

'If I was a different ethnicity, would she treat me the same?': Latino parents' experiences obtaining autism services.

This article reports on an ethnographic study with 12 Latino families of children on the autism spectrum related to obtaining autism services in Los Angeles County. Using critical discourse analysis of interviews, observations, and records, we consider the experiences of the Latino families in relation to: 1) A discursively constructed 'autism parent' subject position that mandates 'fighting' service systems to 'win' autism services for children, originating from White middle-class parents' socio-economic resources and social capital; 2) A neoliberal social services climate that assumes scarcity of available resources and prioritizes austerity in their authorization; and 3) A media and institutional 'cultural deficit' discourse that attributes disparities in autism services for Latino children to their parents' presumed culturally-based 'passivity.' We argue that parental discourse about fighting, or not fighting, for autism services is engendered by a tension between a parental logic of care, and the logic of competition of the economic market.

Latino Families' Experiences With Autism Services: Disparities, Capabilities, and Occupational Justice.

This article examines six cases of publicly funded Applied Behavior Analysis (ABA) therapy for Latino children with autism spectrum disorder (ASD) to contribute to thinking about occupational justice. In this ethnographic study of six Latino families of children with ASD in Los Angeles County, all families were offered ABA for their children, but five families experienced occupational challenges leading them to insist on modifications of ABA or to opt out of the service. We consider in each case (a) how the families' experiences can be understood occupationally, (b) how ABA affected the functionings and capabilities of the children and their families, and (c) how the parents' accounts relate to occupational justice. Applying the capabilities approach can help operationalize the concept of occupational justice as a tool to evaluate social policy across cases.

"You Can Turn off the Light If You'd Like": Pediatric Health Care Visits for Children with Autism Spectrum Disorder as an Interactional Achievement.

Substantial scholarship has been generated in medical anthropology and other social science fields on typically developing child-parent-doctor interactions during health care visits. This article contributes an ethnographic, longitudinal, discourse analytic account of a child with autism spectrum disorder (ASD)-parent-doctor interactions that occur during pediatric and neurology visits. The analysis shows that when a child with ASD walks into the doctor's office, the tacit expectations about the visit may have to be renegotiated to facilitate the child's, the parent's, and the doctor's participation in the interaction. A successful visit then becomes a hard-won achievement that requires the interactional and relational work of all three participants. We demonstrate that communicative and sensory limitations imposed by ASD present unique challenges to all the participants and consider how health care disparities may invade the pediatric encounter, making visible the structural and interactional processes that engender them.

The social life of health records: understanding families' experiences of autism.

Outside of the epidemiological surveillance studies of autism prevalence, health records of children diagnosed with autism have not been sufficiently examined, yet they provide an important lens for showing how autism diagnosis, services and interventions are negotiated, coordinated and choreographed by families and practitioners across multiple settings. This article provides a multifaceted understanding of these processes from an ethnographic and discourse analytic perspective that reveals structural and interactional phenomena contributing to disparities in autism diagnosis and services. We consider health records as dualistic, material-discursive artifacts that are socio-interactionally co-constructed and variably interpreted, contested and utilized across home, school and clinic contexts. We chronicle several families' experiences of their children's autism diagnoses and interventions and describe ways in which health records are socially constructed, curated and placed in the middle of clinical encounters. We show how the parents in our study draw upon health records' material-discursive properties to display epistemic authority, expertise and knowledge in interactions with healthcare and school professionals involved in authorizing and planning their children's care. We describe how the parents experience the health records' clinical portrayals of their children and themselves, and how the parents' portrayals of their children are tacitly ratified or negated in the health records. The data include health record reviews, narrative interviews with parents and practitioners, and clinical observations. These data were collected between October 2009 and August 2012 as part of a larger study on disparities in autism diagnosis, interventions and services experienced by African American children with autism and their families living in Los Angeles County, California. Our analysis reveals the central role of health records in maintaining continuity of an autism diagnosis, interventions and services. This article contributes to enhanced professional awareness, parent-professional partnerships, and equity in the provision of healthcare and human services related to autism.