Abstract
Keywords
NSCH Interactive Data Query (2016-Present) The Child & Adolescent Health Measurement Initiative, Health Resources and Services Administration. Available at: https://www.childhealthdata.org/browse/survey/results?q=8520&r=1. Accessed December 1, 2021.
NSCH Interactive Data Query (2016-Present) The Child & Adolescent Health Measurement Initiative, Health Resources and Services Administration. Available at: https://www.childhealthdata.org/browse/survey/results?q=8520&r=1. Accessed December 1, 2021.
Rationale for a National Health Systems Research Agenda
Maternal and Child Health Bureau, Health Resources and Services Administration. Improving the lives of children and youth with special health care needs. Available at:https://mchb.hrsa.gov/maternal-child-health-topics/children-and-youth-special-health-needs. Accessed November 11, 2021.
Maternal and Child Health Bureau, Health Resources and Services Administration. Improving the lives of children and youth with special health care needs. Available at:https://mchb.hrsa.gov/maternal-child-health-topics/children-and-youth-special-health-needs. Accessed November 11, 2021.
Association of Maternal & Child Health Programs, National Academy for State Health Policy, Lucile Packard Foundation for Children's Health. Standards for systems of care for children and youth with special health care needs 2.0.2017. Available at:http://www.amchp.org/programsandtopics/CYSHCN/Documents/Standards%20for%20Systems%20of%20Care%20for%20Children %20and%20Youth%20with%20Special%20Health% 20Care%20Needs%20Version%202.0.pdf. Accessed December 1, 2021.
Children and Youth with Special Health Care Needs National Research Network. Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA). Available at: https://cyshcnet.org/. Accessed November 11, 2021.
Development of the National Research Agenda
- Coller RJ
- Berry JG
- Kuo DZ
- et al.
Topic | Definition | Example Research Question |
---|---|---|
Transition to adulthood | Movement from adolescence to adulthood in all areas, including home, health care, education, and community | What health system model best accomplishes transition to adulthood? |
Caregiving | Tasks, resources, and services needed to meet the day-to-day needs of CYSHCN at home | How can home health care providers enable families to deliver efficient and effective caregiving at home for CYSHCN? |
Family health | Mental, physical, and spiritual health of parents, siblings, and extended family of CYSHCN and their impact on the family | What is the most effective way to optimize family adaptability, resilience, and health (emotional and physical) for CYSHCN? |
Social determinants of health | Conditions in the environments where the children and their families live, learn, work, and play and how these conditions influence access to and quality of health care as well as health outcomes | What is the best way to screen for and address risk factors associated with social determinants of health in a health system for CYSHCN? |
Telehealth | Phone- and video-based health care encounters; patient-provider communications with secure messaging, email, and file exchanges; and use of remote monitoring in a patient's home | Which health services are safe and effective to conduct using telehealth for CYSHCN? Which services are not safe to conduct? |
Principles of care | Identification of CYSHCN in an outpatient clinic practice, offering medical home services, integration with community entities and resources, facilitation of high-quality care transitions (eg, hospital to home), quality improvement, and use of health information technology for care planning and coordination | How can implementation of standards on care principles for CYSHCN improve their health and well-being? |
Financing | Direct and indirect costs and payment for health care delivered across the care continuum, including that incurred by patients and families | Which health system payment models for CYSHCN enable high-quality care and the best health outcomes? |
Research Agenda Topic Papers
Transition to Adulthood
Caregiving at Home
Family Health
Social Determinants of Health (SDH)
Telehealth
Principles of Care
Financing
Discussion
Association of Maternal & Child Health Programs, National Academy for State Health Policy, Lucile Packard Foundation for Children's Health. Standards for systems of care for children and youth with special health care needs 2.0.2017. Available at:http://www.amchp.org/programsandtopics/CYSHCN/Documents/Standards%20for%20Systems%20of%20Care%20for%20Children %20and%20Youth%20with%20Special%20Health% 20Care%20Needs%20Version%202.0.pdf. Accessed December 1, 2021.
Considerations When Using the National Research Agenda for CYSHCN
- Coller RJ
- Berry JG
- Kuo DZ
- et al.
Limitations
Conclusion
Acknowledgements
References
NSCH Interactive Data Query (2016-Present) The Child & Adolescent Health Measurement Initiative, Health Resources and Services Administration. Available at: https://www.childhealthdata.org/browse/survey/results?q=8520&r=1. Accessed December 1, 2021.
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Maternal and Child Health Bureau, Health Resources and Services Administration. Improving the lives of children and youth with special health care needs. Available at:https://mchb.hrsa.gov/maternal-child-health-topics/children-and-youth-special-health-needs. Accessed November 11, 2021.
Association of Maternal & Child Health Programs, National Academy for State Health Policy, Lucile Packard Foundation for Children's Health. Standards for systems of care for children and youth with special health care needs 2.0.2017. Available at:http://www.amchp.org/programsandtopics/CYSHCN/Documents/Standards%20for%20Systems%20of%20Care%20for%20Children %20and%20Youth%20with%20Special%20Health% 20Care%20Needs%20Version%202.0.pdf. Accessed December 1, 2021.
Children and Youth with Special Health Care Needs National Research Network. Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA). Available at: https://cyshcnet.org/. Accessed November 11, 2021.
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- Improving health care transitions for children and youth with special health care needs.Acad Pediatr. 2022; 22: S7-S13
- Understanding caregiving and caregivers: supporting children and youth with special health care needs at home.Acad Pediatr. 2022; 22: S14-S21
- Research on family health and children and youth with special health care needs.Acad Pediatr. 2022; 22: S22-S27
- Assessing and addressing social determinants of health among children and youth with special health care needs.Acad Pediatr. 2022; 22: S28-S33
- Child health, vulnerability, and complexity: use of telehealth to enhance care for children and youth with special health care needs.Acad Pediatr. 2022; 22: S34-S40
- Research agenda for the model of care for children and youth with special health care needs.Acad Pediatr. 2022; 22: S41-S46
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