• Event and Webinar Recaps

    Pediatric Complex Care Seminar Session 9: Aspiration

    This is the ninth seminar of the 10-part Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities (CMC) and Disabilities (C6) seminar series. Kathy McClelland, Katy Peck, and Dr. Christpher Russell discuss aspiration in the care of children with medical complexity.

  • Event and Webinar Recaps

    Pediatric Complex Care Seminar Session 8: Sleep

    This is the eighth seminar of the 10-part Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities (CMC) and Disabilities (C6) seminar series. Kate Robinson of Family Voices will be joined by Kate Holler, Sarah Perkins, Dr. Caroline Okorie, and Dr. Shelly Weiss to discuss sleep.

  • Event and Webinar Recaps

    Pediatric Complex Care Seminar Session 7: Polypharmacy

    This is the seventh seminar of the 10-part Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities (CMC) and Disabilities (C6) seminar series. Dr. Eyal Cohen will be joined by Sarah Carlson, Kasey Dudley, Dr. James Feinstein, and Luke Orth to discuss polypharmacy.

  • Journal Articles

    Child Health, Vulnerability, and Complexity: Use of Telehealth to Enhance Care for Children and Youth With Special Health Care Needs

    Telehealth has the potential to improve quality of care, particularly deficiencies related to access and patient experience of care. Telehealth may also reduce disparities for children and youth with special health care needs (CYSHCN) by alleviating barriers to accessing in-person care, for example, making it easier to access care for those residing in rural areas and children with medical complexity who are particularly fragile. Authors review the current knowledge around telehealth, identify populations for whom telehealth could be especially beneficial, discuss the important gaps identified, and make recommendations for specific studies that will help move the field forward. 

  • Journal Articles

    Overview of the National Research Agenda on Health Systems for Children and Youth With Special Health Care Needs

    This executive summary introduces the National Research Agenda on Health Systems for Children and Youth With Special Health Care Needs, a supplement to Academic Pediatrics. Authors identify six research priorities aimed at improving health outcomes and well-being for children and youth with special health needs and their families: transition to adulthood, caregiving, family health, child health care, principles of care, and financing.

  • Journal Articles

    Research Agenda for Implementation of Principles of Care for Children and Youth With Special Health Care Needs

    Children and youth with special health care needs (CYSHCN) have a range of medical, educational, and support service needs to achieve optimal health and wellness. Principles of care for CYSHCN have been well described, but the literature is lacking particularly on implementation and integration of care across different settings and systems. The authors identify four primary areas of investigation that could further understanding of how to adopt and spread principles of care for CYSHCN.

  • Journal Articles

    Research on Family Health and Children and Youth With Special Health Care Needs

    Health systems are designed to support children and youth with special health care needs (CYSHCN) but do not often consider the health and well-being of their family. Despite a growing body of literature, substantial gaps remain in understanding the impact of caregiving on family health and well-being and the provision of support for families. This article describes the current state of research on the health of families of CYSHCN and provides recommendations for future investigation.

  • Journal Articles

    Moving From Spending to Investment: A Research Agenda for Improving Health Care Financing for Children and Youth With Special Health Care Needs

    Children and youth with special health care needs (CYSHCN) are high utilizers of health care resources and their unique needs merit targeted consideration. The focus of payment reform efforts to date has been on adults with chronic illnesses, with less priority given to investment in children's health and the life course. Spending for children's health is an investment in their growth and development with long-term outcomes at stake. This paper discusses high-priority research topics in the area of health care financing for CYSHCN including what is currently known and important knowledge gaps.

Pages