Document Type

Article

Publication Date

6-2025

Publisher

American Academy of Pediatrics

Source Publication

Pediatrics

Source ISSN

0031-4005

Original Item ID

DOI: 10.1542/peds.2024-070217

Abstract

Approximately 1 million children with medical complexity (CMC) live in the United States, and although their health care needs comprise 40% of child health costs, most of their care is provided at home by their parents and other family caregivers. Around-the-clock care encompasses direct medical care, including administration of medications and nutrition, care coordination and supplies management, emotional work of vigilance and worry, financial planning, and more. This intensive caregiving offers meaning and joy for many of those parents, yet its constancy can threaten their emotional well-being, physical health, and financial security, presumedly negatively influencing their capacity to provide care across decades. Respite is planned or emergency services that allow a parent caregiver time away from caregiving responsibilities to confer measurable improvement in the well-being of the parent, child, and/or family system. Parents of CMC prioritize respite as one of their greatest unmet needs. A national survey of 148 United States hospitals found that 79% of them reported their patients’ family caregivers lack access to respite. While respite services do exist, respite need is infrequently addressed, particular to each family, and thus challenging to fill.

Comments

Accepted version. Pediatrics, Vol. 155, No. 6 (June 2025). DOI. © 2025 by the American Academy of Pediatrics. Used with permission.

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