A team of researchers led by the Institute for Patient- and Family-Centered Care investigated the effects of the COVID-19 pandemic on Patient and Family Advisory Councils (PFACs) including how PFACS adapted operations and the intersection with issues related to PFAC diversity, equity, and inclusion.
This fact sheet answers key questions about access to care through California Children’s Services during COVID-19. It also provides information on free legal assistance. The fact sheet is available in English, Chinese, and Spanish.
No validated tools currently exist to measure pediatric home health care quality. This article outlines the development and testing of PediHome, a content-valid family-reported survey measure of home health care quality for children with medical complexity. PediHome can be used to identify deficits in timely access to care, overall home health care quality, and specific aspects such as confidence in nursing care provided.
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.
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.
Social and environmental factors contribute to health inequities among children and youth with special health care needs (CYSHCN). While still an emerging field of research, authors stress the need for greater understanding of the patterns and impacts of social determinants of health as experienced by CYSHCN.
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.
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.
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.
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.