• 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.

  • 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.

  • 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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