• 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.

  • Journal Articles

    A National Health Systems Research Agenda for Children and Youth With Special Health Care Needs: Supplement to Academic Pediatrics

    A national group of researchers and family leaders aim to improve the system of care for children and youth with special health care needs (CYSHCN) through the establishment of a family-centered national research agenda. This supplement to Academic Pediatrics provides a blueprint of research priorities that address health outcomes and the well-being of CYSHCN.

  • Event and Webinar Recaps

    Pediatric Complex Care Seminar Session 6: Disorders of Tone

    This is the sixth 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. Co-leads Dr. Eyal Cohen and Dr. Catherine Diskin will be joined by Dr. Laurie Glader, Dr. Nathan Rosenberg, Maureen Benschoter, and Sarah Perkins to discuss disorders of tone.

  • Journal Articles

    Understanding Caregiving and Caregivers: Supporting Children and Youth With Special Health Care Needs at Home

    Researchers worked with family caregivers to incorporate their expertise on caregiving and lay a better foundation for successful integration between health care settings, family caregiving, and community supports for families of children and youth with special health care needs (CYSHCN). This article identifies high-priority gaps in CYSHCN caregiving research and proposes research questions that could increase the evidence-base for understanding of the work of family caregivers and how best to support them.

  • Event and Webinar Recaps

    Pediatric Complex Care Seminar Session 5: Shared Decision Making

    This is the fifth 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. Co-leads Dr. Eyal Cohen and Dr. Catherine Diskin will be joined by David Fox, Jill McCormick, and Brennan McCormick to discuss shared decision making in the care of children with medical complexity.

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