Approximately 14 million children in the United States, 18.8% of the pediatric population, are reported to have at least one special health care need (Ghandour et al., 2022). A subset of children within this population are referred to as children with medical complexity (CMC). These are children who have at least one complex, chronic condition affecting multiple body systems, experience limitations in their functional abilities, are dependent on life sustaining medical technology, and require extensive care coordination (Cohen et al., 2011; Rogers et al., 2021). With increased technological advancements and subsequent decreases in mortality from complex pediatric diseases, the number of CMC in the United States grows each year (Yu et al., 2021). Historically, without access to necessary home and community-based services such as skilled home care nurses and medical equipment, parents of CMC were forced to institutionalize their children.

However in the 1980s, new waivers and policies funded by Medicaid, a traditionally income-based federally and state funded public health insurance program in the United States, began to cover these services under newly developed medical-need criteria which provided many parents the opportunity to bring their children with medical complexity home (Perkins & Agrawal, 2018). Unfortunately, state-to-state variation in these medical-need criteria has led to geographic discrepancies in Medicaid enrollment accessibility (Kusma et al., 2022). Enactment of the Patient Protection and Affordable Care Act in 2010 aimed to address these discrepancies by increasing federal funding of Medicaid and expanding eligibility criteria to allow more individuals, regardless of where they live, the ability to enroll into Medicaid programs (Crowley & Golden, 2014; Patient Protection and Affordable Care Act of 2010, 2010). This process of Medicaid expansion went into effect on January 1st, 2014, though ten states have yet to adopt this expansion plan at the time of this writing (Kaiser Family Foundation [KFF], 2023). Despite the weaknesses of the Medicaid program, it remains the primary insurance provider for CMC (Yu et al., 2021).

As parents of CMC, henceforth referred to as parental caregivers, take advantage of their ability to bring their children home, they also assume direct responsibility for the care their children require. To ensure the appropriate care is provided, parental caregivers must interact with various elements of the healthcare system including healthcare providers at all levels of care, durable medical equipment (DME) suppliers, and insurance companies (Allshouse et al., 2018; Foster et al., 2019; Rasooly et al., 2020). Unfortunately, the current healthcare system in the U.S. is failing to properly support parental caregivers in addressing the sophisticated care needs of CMC (Foster et al., 2022). Shortages in available home care nurses with pediatric expertise leaves parental caregivers without home care support and drive hospital discharge delays among CMC, with approximately 92% of additional days in hospital attributed to unavailability of home care nurses (Maynard et al., 2019). These discharge delays contribute to 47.2% of Medicaid spending toward acute care services for CMC, twenty times higher than spending on preventative healthcare services at the outpatient and community levels (Berry et al., 2014). Additionally, despite the enactment of Medicaid expansion, state to state variation among available Medicaid waivers directed toward community-based services for CMC continue to perpetuate geographic inconsistences in the care available to children (Keim-Malpass et al., 2019).

Navigating these and other barriers to care places tremendous responsibility on the shoulders of parental caregivers. Coupled with the responsibilities of supporting other family members and meeting employment demands, these parents experience negative effects on their physical, emotional, and mental health (Yu et al., 2020). Previous work has examined these effects, often referring to them as “caregiver burden” and attributing this burden to the stressors of disease management (Caicedo, 2014; Cousino & Hazen, 2013; Graham et al., 2016; Prieto et al., 2022). Though widely used, the current operationalization and definition of caregiver burden among parental caregivers of CMC carries a major weakness. As Comeau (2019) describes, there is an inherent stigmatization and danger in placing blame on a child's needs as the root cause of burden experienced by a parent. It also fails to consider the systemic barriers associated with caring for CMC at home. In other words, there may be factors beyond the diagnosis, such as home care nursing shortages, discharge delays, and variations among insurance coverage, that are root causes of parental caregiver burden.

A greater understanding of how barriers and gaps at the systems-level may be contributing to burden experienced among parental caregivers of CMC is needed. Therefore, the purpose of this integrative review is to address the following question: Which elements of the bureaucratic healthcare system are contributing to burden among parental caregivers of children with medical complexity living at home?

Guiding this integrative review is Ray's Theory of Bureaucratic Caring (BCT) (Ray, 2021). Grounded in Hegelian dialectic, BCT represents a synthesis of two contrasting concepts – nurse caring and bureaucracy (Ray, 2021). Embracing the paradox of nurses attempting to provide humanistic care within financially driven and technology dependent hospital systems, Ray's theory demonstrates their intertwined nature. One cannot exist without the other and through integration of the bureaucratic elements of hospitals, nurse caring can propel forward successfully (Ray, 2021).

Within this theoretical framework exist seven major concepts, each representative of an element of bureaucracy: social-cultural, physical, educational, political, legal, economic, and technological (Fig. 1). These concepts surround an additional concept of spiritual-ethical caring which represents the essence of nurse caring. The framework presents these eight concepts as holographic in nature, meaning each individual concept exists independently and collectively to create the interconnected whole referred to as bureaucratic caring (Ray, 2021). The intertwined nature between caring and bureaucracy that underlies the phenomenon of bureaucratic caring posits a bidirectional relationship between them. Meaningful positive occurrences within the bureaucracy can have positive implications on the care process and likewise, negative occurrences can inhibit the process of caring. For parental caregivers caring for their children within the bureaucracy of the healthcare system, barriers within the system may not only prevent effective caring but also contribute to overall feelings of burden.