Scientific Abstract
Little research has been conducted on behavioral characteristics of children with ASD from diverse cultures within the US or from countries outside of the US or Europe, with little reliable information yet reported from developing countries. We describe the process used to engage diverse communities in ASD research in two community-based research projects—an epidemiological investigation of 7–12 year olds in South Korea and the Early Autism Project, an ASD detection program for 18–36 month old Zulu-speaking children in South Africa. Despite the differences in wealth between these communities, ASD is under-diagnosed in both settings, generally not reported in clinical or educational records. Moreover, in both countries there is low availability of services. In both cases, local knowledge helped researchers to address both ethnographic as well as practical problems. Researchers identified the ways in which these communities generate and negotiate the cultural meanings of developmental disorders. Researchers incorporated that knowledge as they engaged communities in a research protocol, adapted and translated screening and diagnostic tools, and developed methods for screening, evaluating, and diagnosing children with ASD.
Objective An emerging literature suggests patients with chronic illnesses can benefit from integrated, person-centric approaches to health care, including group-based programs. However, much of the research in this area is disease specific. The objective of this study was to collect preliminary evidence on the efficacy of Taking Charge of My Life and Health (TCMLH), a Whole Health group-based program that emphasizes self-care and empowerment on the overall health and well-being of veterans, a population burdened with high rates of multiple chronic conditions. Method Self-reported outcomes, including standardized survey measures, were collected at pretest, posttest, and 2-month follow-up from 77 participants across 15 groups at four VA sites. Random intercept mixed-model regressions were used to analyze data. Results Results from this initial study showed high satisfaction with the program and facilitators, and high attendance. There were significant pre–post gains in self-care attitudes and behaviors, patient motivation, meaning and purpose, mental health, perceived stress, goal progress, and goal-specific hope. Outcomes were maintained at 2-month follow-up for patient motivation, perceived stress, goal-specific hope, and goal progress. Significant gains were observed in health care empowerment and physical health from pretest to follow-up. Conclusions Preliminary findings support the efficacy of TCMLH, a Whole Health group-based program that emphasizes patient empowerment, self-care practices, and peer support. Future research priorities include a rigorous evaluation with a larger sample size and control group to assess effectiveness.
Current policies aimed at children with disabilities in Ladakh, India, focus on the delivery of educational services to the individual child. Ethnographic research conducted with children with cognitive disabilities and their families in this rural Himalayan region reveals why this approach is problematic, given the local cultural context. Critique centers on the mismatch between inclusive education’s emphasis on the individual child and the cultural context in which the family is crucial to a child’s well-being and inclusion. In Ladakh, families – not children alone – experience and navigate the social, biological, and financial repercussions of disability and should thus be the focus of “inclusive” interventions.
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