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Open Access Publications from the University of California

Scholarly Works (5 results)

  • Article
  • Peer Reviewed
UC San Francisco Previously Published Works (2015)
To provide a national, population-based assessment of the quality of the health care system for children and youth with special health care needs using a framework of six health care system quality indicators. 49,242 interviews with parents of children with special health care needs from the 2009-10 National Survey of Children with Special Health Care Needs (NS-CSHCN) were examined to determine the extent to which CSHCN had access to six quality indicators of a well-functioning system of services. Criteria for determining access to each indicator were established and applied to the survey data to estimate the proportion of CSHCN meeting each quality indicator by socio-demographic status and functional limitations. 17.6% of CSHCN received care consistent with all six quality indicators. Results for each component of the system quality framework ranged from a high of 70.3% of parents reporting that they shared decision-making with healthcare providers to a low of 40% of parents reporting receipt of services needed for transition to adult health care. Attainment rates were lower for CSHCN of minority racial and ethnic groups, those residing in households where English was not the primary language, those in lower income households, and those most impacted by their health condition. Only a small proportion of CSHCN receive all identified attributes of a high-quality system of services. Moreover, significant disparities exist whereby those most impacted by their conditions and those in traditionally disadvantaged groups are served least well by the current system. A small proportion of CSHCN appear to remain essentially outside of the system, having met few if any of the elements studied.
    Cover page: Assessing Systems Quality in a Changing Health Care Environment: The 2009–10 National Survey of Children with Special Health Care Needs
    • Article
    • Peer Reviewed
    UCLA Previously Published Works (2021)

    Purpose

    Understanding the full impact of COVID-19 on U.S. children, families, and communities is critical to (a) document the scope of the problem, (b) identify solutions to mitigate harm, and (c) build more resilient response systems. We sought to develop a research agenda to understand the short- and long-term mechanisms and impacts of the COVID-19 pandemic on children's healthy development, with the goal of devising and ultimately testing interventions to respond to urgent needs and prepare for future pandemics.

    Description

    The Life Course Intervention Research Network facilitated a series of virtual meetings that included members of 10 Maternal and Child Health (MCH) research programs, their research and implementation partners, as well as family and community representatives, to develop an MCH COVID-19 Research Agenda. Stakeholders from academia, clinical practice, nonprofit organizations, and family advocates participated in four meetings, with 30-35 participants at each meeting.

    Assessment

    Investigating the impacts of COVID-19 on children's mental health and ways to address them emerged as the highest research priority, followed by studying resilience at individual and community levels; identifying and mitigating the disparate negative effects of the pandemic on children and families of color, prioritizing community-based research partnerships, and strengthening local, state and national measurement systems to monitor children's well-being during a national crisis.

    Conclusion

    Enacting this research agenda will require engaging the community, especially youth, as equal partners in research co-design processes; centering anti-racist perspectives; adopting a "strengths-based" approach; and integrating young researchers who identify as Black, Indigenous, and People of Color (BIPOC). New collaborative funding models and investments in data infrastructure are also needed.
      Cover page: COVID-19 and Children’s Well-Being: A Rapid Research Agenda
      • Article
      On-Line Working Paper Series (2004)

      OBJECTIVE: To examine the prevalence of parent–provider discussions of family and community health risks during well-child visits and the gaps between which issues are discussed and which issues parents would like to discuss.

      METHODS: Data came from the National Survey of Early Childhood Health, a nationally representative sample of parents of 2068 children aged 4 to 35 months. The outcome measures were 1) the reported discussions with pediatric clinicians about 7 family and community health risks and 2) whether the parent believes that pediatric clinicians should ask parents about each risk.

      RESULTS: Most parents believe that pediatric providers should discuss topics such as smoking in the household, financial difficulties, and emotional support available to the parent. However, with the exception of “household smoking,” fewer than half of parents have been asked about these topics by their child’s clinician. Parents of black and Hispanic children were more likely than parents of white children to be asked about several of these issues, as were parents of the youngest children and those with publicly financed health insurance. The greatest gap between parents’ views and their reports of discussion with the clinician occur for parents of white children and older children. Among parents who hold the view that a topic should be discussed, parents of white and older children are less likely than others to report discussing some or all family and community health risks.

      CONCLUSION: The low frequency of discussions for many topics indicates potential unmet need. More universal surveillance of parents with young children might ensure that needs are not missed, particularly given that strong majorities of parents view family and community topics, with the exception of community violence, as appropriate for discussion in clinic visits.

        Cover page: Routine Assessment of Family and Community Health Risks: Parent Views and What They Receive
        • Article
        • Peer Reviewed
        UC Davis Previously Published Works (2022)
        In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.
          • Article
          • Peer Reviewed
          UC Davis Previously Published Works (2022)
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