Faculty Collaboration Database

Impact of Systems of Care on Emotional Well-Being of Primary Family Caregivers of Children with Medical Complexity. Matern Child Health J 2025 Mar;29(3):405-414

Date

02/08/2025

Pubmed ID

39920541

Pubmed Central ID

PMC12352745

DOI

10.1007/s10995-025-04066-x

Scopus ID

2-s2.0-105001089778 (requires institutional sign-in at Scopus site)   3 Citations

Abstract

OBJECTIVES: This study aimed to explore the experiences of caregivers of children with medical complexity (CMC) enrolled in a complex care program, focusing on their interactions with the healthcare system and the impact on caregiver well-being.

METHODS: Qualitative interviews were conducted with 20 caregivers, and data were analyzed using interpretative phenomenological analysis. The interviews covered topics such as navigating the medical system, accessing resources, and interactions with healthcare providers.

RESULTS: Caregivers faced challenges in navigating the healthcare system, including scheduling appointments, finding suitable treatment plans, and managing hospitalizations. They expressed the need for more practical, financial, and informational resources to support their caregiving responsibilities. Access to respite care was identified as a significant challenge, with limited availability and affordability. Caregivers highlighted the importance of connecting with other caregivers and accessing accurate information specific to their child's condition.

CONCLUSIONS FOR PRACTICE: The findings emphasize the unmet needs of caregivers of CMC and the barriers they face within the healthcare system. To support caregiver well-being, interventions should address these barriers by improving infrastructural support, enhancing training for in-home caregivers, and advocating for comprehensive support services for the entire family. Involving caregivers in the development and implementation of interventions is crucial to ensure their feasibility, applicability, and desirability. By addressing these challenges and tailoring interventions to the unique needs of caregivers of CMC, healthcare providers can promote better outcomes for both caregivers and their CMC.

Author List

Schnell JL, Tager JB, Kenney AE, Lim PS, Everhart SA, Johaningsmeir S, Balistreri KA, Morgan-Tautges A, Berridge KE, Brophey M, Rothschild CB, Scanlon MC, Davies WH, Lee KJ

Authors

Samantha Everhart PhD Assistant Professor in the Pediatrics department at Medical College of Wisconsin
K Jane Lee MA, MD Interim Chief, Professor in the Pediatrics department at Medical College of Wisconsin
Charles Baron Rothschild MD Associate Professor in the Pediatrics department at Medical College of Wisconsin
Matthew C. Scanlon ME, MD Professor in the Pediatrics department at Medical College of Wisconsin
Jessica Schnell MPH, MD Associate Professor in the Pediatrics department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Adolescent
Adult
Caregivers
Child
Child, Preschool
Chronic Disease
Female
Health Services Accessibility
Humans
Interviews as Topic
Male
Middle Aged
Multimorbidity
Qualitative Research
Young Adult