New Grants Target Transition to Adult Care, Family Engagement in Research
PALO ALTO – Easing adolescents’ transition to adult health care, encouraging families to participate more fully in research, and assessing the impact of COVID-19 on children with special health care needs are the topics of three grants recently awarded by the Lucile Packard Foundation for Children’s Health.
补助金：
儿童至成人医疗保健过渡质量测量
National Alliance to Advance Adolescent Health (NAAAH)/Got Transition
Without a structured transition process from pediatric to adult care, youth with special health care needs can experience gaps in care leading to problems with medication compliance, adverse health outcomes, diminished quality of life, and preventable emergency room and hospital use. A key barrier to effective transition is the absence of measures to understand whether transition has occurred, and if so, how well. This grant will support development and dissemination of guidance on appropriate transition quality measures. The grant builds on a previous Foundation grant to NAAAH that funded 金融激励模式的开发 to encourage collaboration between pediatric and adult clinicians to implement structured approaches to transition.
让患者、青少年和家庭领导者参与研究的最佳实践
University of Colorado Denver CYSHCN National Research Network, in partnership with Family Voices
尽管青少年与家庭伙伴 (YFP) 的作用不断扩大，但制定 YFP 研究合作最有效的策略却迟迟未能实现。本项目将编写一份指南，帮助研究人员、青少年和家庭了解合作研究项目的好处以及成功合作的细微差别。该指南旨在阐明 YFP 的作用，确保研究问题能够反映儿童、青少年和家庭的需求，并增进研究人员和 YFP 如何相互学习，从而使研究更具说服力和可操作性。本指南将作为以下项目的后续行动： A Standard of Compensation for Youth and Family Partners.
Parenting in the Context of COVID-19
YouGov, in partnership with the Centers for Disease Control and Prevention, American Academy of Pediatrics, Prevent Child Abuse America, Tufts University, and the California Department of Public Health
This funding will ensure that the views and experiences of families of children with special health care needs are included in a national survey being conducted to assess the impact of COVID-19 on adverse and positive childhood experiences. The grant will support a set of five questions to assess the effects on the pandemic on CSHCN, and will provide an oversample of 1,500 families in California so that additional California-specific analysis can be completed. The survey will be fielded three times over the next nine months.
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About the Foundation: The Lucile Packard Foundation for Children’s Health is a public charity, founded in 1997. Its mission is to elevate the priority of children’s health, and to increase the quality and accessibility of children’s health care through leadership and direct investment. Through its Program for Children with Special Health Care Needs, the foundation supports development of a high-quality health care system that results in better health outcomes for children and enhanced quality of life for families. The Foundation works in alignment with Lucile Packard Children’s Hospital Stanford and the child health programs of Stanford University.
