Caring for children with medical complexity at home: An integrative review

Problem: Despite reporting significant systemic barriers to providing care, burden among parental caregivers of children with medical complexity (CMC) is often attributed to stressors related to disease management. The relationship between parental caregiver burden and systemic barriers within the healthcare bureaucracy, as defined by Ray's Theory of Bureaucratic Caring (BCT), has not been explored. The purpose of this integrative review was to examine which elements of the bureaucratic healthcare system are contributing to burden among parental caregivers of CMC living at home. Eligibility criteria: Refereed research articles related to the experiences of parental caregivers of CMC living in the United States published after 2014. Sample: 1967 articles were obtained on initial literature search. Using the PRISMA algorithm, ten articles published between 2018 and 2022 were ultimately selected for appraisal. Results: Parental caregiver burden was consistently attributed to barriers and gaps among social-cultural, physical, political, legal, economic, technological, and educational elements of the bureaucratic healthcare system. Conclusions: Weaknesses across the bureaucratic elements of the healthcare system prevent CMC from consistently receiving necessary care which in turn, contribute to feelings of burden among their parental caregivers. Efforts to alleviate burden experienced by parental caregivers should focus on addressing gaps within the healthcare bureaucracy. Implications: Nurses are well-positioned to address these gaps through clinical work, advocacy, and research. Future research should further examine the appropriateness of using BCT to better understand the implications of systems-level weaknesses on parental caregiver burden. Parental caregivers of CMC should be closely involved in this process. (c) 2024 Elsevier Inc. All rights reserved.