Background: Community-partnered participatory research (CPPR) is a research approach that supports equitable collaboration of community and academic co-leaders in research and policy. Despite CPPR's 25-year history, infrastructure supporting community members in bidirectional learning has not been formalized.
Objective: This paper describes processes and procedures using CPPR to plan conferences to develop community leadership training infrastructure.
Introduction: A growing number of children have developmental delay (DD) or intellectual and developmental disabilities (IDD), and early intervention (EI) can improve their developmental trajectory. However, access to EI is fraught with disparities. This article describes the development of Parent Navigator (PN) program that placed three parents with lived experience in a pediatric medical home to serve as community health workers to provide support to families with a child with DD or IDD to access EI and other needed resources.
View Article and Find Full Text PDFBackground: Community input is crucial for identifying characteristics necessary for equitable, sustainable community-academic partnerships (CAPs). A November 2021 conference, honoring the late Dr. Loretta Jones and the Community-Partnered Participatory Research (CPPR) model, was held to gather input for designing a learning institute for community members as co-equal partners with academics in research, program, and policy initiatives.
View Article and Find Full Text PDFObjective: The purpose of this study is to identify the sociocultural factors in the Black community that contribute to a delay in identification of Black children with autism spectrum disorder (ASD).
Methods: Four focus groups with parents of typically developing children were conducted at 2 Black Churches using a community-partnered participatory research approach and the socioecological model. Participants completed sociodemographic surveys, viewed CDC Autism Training Videos of Black children with ASD, and reported on their behavioral observations.
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.
View Article and Find Full Text PDFNonmedical descriptors, adjectives that are not related to a medical condition, such as "cute," are often used in presentations in pediatrics. We hypothesize that patterns of their use may reflect obesity bias. Descriptors used by pediatric residents presenting cases of children <9 years in an outpatient clinic during the 2018-2019 and 2019-2020 academic years were recorded.
View Article and Find Full Text PDFLay Abstract: Children diagnosed with autism are likely to be more overweight than children who do not have autism. There are many group programs that help children to be more physically active and improve their eating habits to achieve healthy weight, but most of these programs do not allow children with autism to participate. We studied a program that was specially adapted so children with autism could participate together with peers who do not have autism.
View Article and Find Full Text PDFAutistic 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.
View Article and Find Full Text PDFAm J Intellect Dev Disabil
September 2020
We examined racial and ethnic differences in the prevalence of behavioral problems measured by the Child Behavioral Checklist (CBCL), sleep disturbances measured by the Child Sleep Habits Questionnaire (CSHQ), and medication use among children with Autism Spectrum Disorders (ASD). We analyzed data from the Autism Treatment Network (ATN) dataset for 2,576 children ages 6 to 18 years of age diagnosed with ASD. Multivariable logistic regression accounting for age, gender, Diagnostic and Statistical Manual of Mental Disorders (4th Edition - Text Revision), diagnosis (Autistic Disorder, PDD-NOS, Asperger's Disorder), and parents' education did not show any racial or ethnic differences in behavioral challenges, conduct problems, or sleep disturbances for any of the groups, but Black children had lower odds of Total Problem Behaviors and Asian children had lower odds of Hyperactivity compared to White children.
View Article and Find Full Text PDFChildren in the child welfare system have greater rates of obesity and are more prone to overweight/obesity as adults compared to other children. There is limited research on how ecological, biological and developmental factors impact the trajectory of overweight/obesity in this group. This retrospective study examined these factors among children entering the child welfare system.
View Article and Find Full Text PDFA community-academic partnership, based on a social-ecological framework, addressed pediatric obesity by implementing a multilevel intervention for underserved families in Los Angeles, California. Individual- and interpersonal-level outcomes included significant positive changes in preschoolers' identification of unhealthy foods and in parents' shopping, cooking, and parenting behaviors. Organizational-, community-, and policy-level outcomes included healthy options at restaurants and a coalition supporting a parental initiative to create healthy checkout aisles in supermarkets.
View Article and Find Full Text PDFCult Med Psychiatry
June 2018
Research on autism spectrum disorder (ASD) and on Alzheimer's Disease (AD) and other types of dementia describes a behaviour called 'wandering', a term that denotes movement through space lacking intention or exact destination, as when a person is disoriented or not self-aware. In the U.S.
View Article and Find Full Text PDFThere 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.
View Article and Find Full Text PDFThis 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.
View Article and Find Full Text PDFPurpose: This study used ecological momentary assessment (EMA), a real-time self-report strategy, to examine (1) whether dog owners were more likely to be physically active when they were with their dogs and (2) whether being with a dog amplifies positive and dampens negative affective response during physical activity.
Design: Electronic EMA surveys for 12 days.
Setting: Free-living.
OTJR (Thorofare N J)
October 2016
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.
View Article and Find Full Text PDFConversation and discourse analyses were used to examine medical problem presentation in pediatric care.Healthcare visits involving children with ASD and typically developing children were analyzed. We examined how children’s communicative and epistemic capabilities, and their opportunities to be socialized into a competent patient role are interactionally achieved.
View Article and Find Full Text PDFSubstantial 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.
View Article and Find Full Text PDFCult Med Psychiatry
June 2015
'Being autistic' or 'having Autism Spectrum Disorder' implies a limited range of 'being social,' but the in situ organization of interaction, what Maynard and Marlaire (Qual Soc 15(2):177-202, 1992) call the 'interactional substrate,' within which this delimitation enfolds is usually hidden from sight. Analysis of processes constituting different 'interactional substrates' provides a view of how one comes to be known by and to self and others as a certain kind of being who is available (or not) for acting and feeling in certain ways. People diagnosed with Autism Spectrum Disorder (American Psychiatric Association, Diagnostic and statistical manual of mental disorders, 2013) are often described as 'being' impaired in intersubjective understanding of others.
View Article and Find Full Text PDFSoc Sci Med
September 2014
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.
View Article and Find Full Text PDF'Wandering' and 'elopement' have been identified as common in autism, affecting half of all diagnosed children ages four to ten, yet families rarely receive advice from practitioners even after the fact. Family perspectives have been missing from the literature as well as from public health and policy debates on how and when to respond to this problem. The problem of 'wandering' and 'elopement' reveals a complex intersection of larger issues encountered by families of children with autism.
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