ABSTRACT
OBJECTIVE: 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. Focus groups were audio recorded and transcribed. Thematic data analysis was conducted using NVivo software. RESULTS: At the individual level, participants interpreted ASD-associated behaviors as a problem of timing of developmental milestones in the course of normative development rather than a sign of a disorder and positive and negative characteristics. At the interpersonal level, the role of grandparents and extended family was important for monitoring child development. At the organizational level, racial concordance with health care providers was seen as critical because of historical mistrust. At the community level, fear of racism and child protective services and inequitable care emerged. At the policy level, there were concerns about access to affordable, high-quality care. CONCLUSION: This study provides insight into the sociocultural factors in the faith-based Black community that may contribute to a delay in identification of Black children with ASD. Health care professionals need additional training to effectively serve Black children and families in the face of historical mistrust and health care inequity.
Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child , Female , Humans , Adult , Autism Spectrum Disorder/diagnosis , Focus Groups , Child Development , Child BehaviorABSTRACT
Objective: To describe the early activities and lessons of the Share, Trust, Organize, Partner COVID-19 California Alliance (STOP COVID-19 CA), the California awardee of the NIH-funded multi-state Community Engagement Alliance (CEAL) against COVID-19. The Alliance was established to ensure equity in Coronavirus-19 disease (COVID-19) research, clinical practice, and public health for communities most impacted by the COVID-19 pandemic. Study setting: The STOP COVID-19 CA Alliance network of 11 universities and affiliated partner community-based organizations (CBOs) across California. Study design: Mixed methods evaluation consisting of an analysis of activity (August 2020 to December 2021) detailed in reports submitted by community-academic teams and a survey (August 2021) of academic investigators and affiliated community-based organization (CBO) partners. Data collection: We summarized activities from the 11 community-academic teams' progress reports and described results from an online survey of academic investigators and CBO partners in the California Alliance. Principal findings: A review of progress reports (n = 256) showed that teams fielded surveys to 11,000 Californians, conducted 133 focus groups, partnered with 29 vaccine/therapeutics clinical trials, and led more than 300 town halls and vaccine events that reached Californians from communities disproportionately impacted by COVID-19. Survey responses from academic investigators and CBO partners emphasized the importance of learning from the successes and challenges of the California Alliance teams' COVID-19 initiatives. Both academic and CBO respondents highlighted the need for streamlined federal and institutional administrative policies, and fiscal practices to promote more effective and timely operations of teams in their efforts to address the numerous underlying health and social disparities that predispose their communities to higher rates of, and poor outcomes from, COVID-19. Conclusions: STOP COVID-19 CA represents a new and potentially sustainable statewide community engagement model for addressing health disparities in multiethnic/multicultural and geographically dispersed communities.
ABSTRACT
Significance: Prior research suggests that Community Engagement and Planning (CEP) for coalition support compared with Resources for Services (RS) for program technical assistance to implement depression quality improvement programs improves 6- and 12-month client mental-health related quality of life (MHRQL); however, effects for clients with multiple chronic medical conditions (MCC) are unknown. Objective: To explore effectiveness of CEP vs RS in MCC and non-MCC subgroups. Design: Secondary analyses of a cluster-randomized trial. Setting: 93 health care and community-based programs in two neighborhoods. Participants: Of 4,440 clients screened, 1,322 depressed (Patient Health Questionnaire, PHQ8) provided contact information, 1,246 enrolled and 1,018 (548 with ≥3 MCC) completed baseline, 6- or 12-month surveys. Intervention: CEP or RS for implementing depression quality improvement programs. Outcomes and Analyses: Primary: depression (PHQ9 <10), poor MHRQL (Short Form Health Survey, SF-12<40); Secondary: mental wellness, good physical health, behavioral health hospitalization, chronic homelessness risk, work/workloss days, services use at 6 and 12 months. End-point regressions were used to estimate intervention effects on outcomes for subgroups with ≥3 MCC, non-MCC, and intervention-by-MCC interactions (exploratory). Results: Among MCC clients at 6 months, CEP vs RS lowered likelihoods of depression and poor MHRQL; increased likelihood of mental wellness; reduced work-loss days among employed and likelihoods of ≥4 behavioral-health hospitalization nights and chronic homelessness risk, while increasing faith-based and park community center depression services; and at 12 months, likelihood of good physical health and park community center depression services use (each P<.05). There were no significant interactions or primary outcome effects for non-MCC. Conclusions: CEP was more effective than RS in improving 6-month primary outcomes among depressed MCC clients, without significant interactions.
