• 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.

  • 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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