Supporting the Well-Being of Children and Youth With Special Health Care Needs: NASEM Proceedings

Children and youth with special health care needs (CYSHCN) are living longer than ever. These advances come with a price: Patients, families, communities, and systems must absorb the challenges of chronic caregiving, including protracted stress and poor mental health. In 2023, the National Academies of Science, Engineering, and Medicine convened thought-leaders for conversations about supporting the emotional well-being of CYSHCN and their families. Invited panelists included 2 parents and 3 academic pediatricians. Parents suggested opportunities for clinicians and systems to better support CYSHCN. Clinicians described work focused on: Individual patient- and family-level resilience: Defined as a process of harnessing resources to sustain well-being in the face of stress, resilience is learnable. Programs that teach people to identify and bolster "resilience resources" show promise in improving child and caregiver mental health;Clinician- and practice-level provision of care: Individual-level interventions are only effective if clinicians know when and how to deliver them. Hence, the American Board of Pediatrics created and demonstrated the success of a "roadmap" to support routine screening for and discussion of social and emotional health needs; andSystems-level barriers: Even with patient-level programs and clinician-practice guidance, unmet social and mental health needs persist. Accessing and coordinating services is difficult, may not be covered by insurance, and historically marginalized populations are the least likely to benefit. Together, the panel underscored a critical fact: We cannot optimize child and family well-being without focusing on patients, caregivers, clinicians, and systems.