"It Wasn't Nonadherence": Administrative Workload for Families and Inequitable Outcomes

Area of Science:

• Pediatric Health Services Research
• Health Equity Studies
• Healthcare Administration

Background:

• Administrative workload, encompassing system navigation and task completion, significantly impacts families with complex pediatric conditions.
• This workload is an underrecognized driver of health inequities, often exacerbated by fragmented systems and language barriers.

Purpose of the Study:

• To examine administrative workload as a structural determinant of health and a mechanism for producing health inequities.
• To illustrate how routine hospital processes externalize complexity onto families with limited resources.

Main Methods:

• A case study of a child with medical complexity (Mateo) to analyze the impact of administrative demands on family caregiving.
• Examination of medical record reframing of challenges as "nonadherence" and "inconsistent follow-up."
• Analysis of historical and policy contexts influencing healthcare system accountability.

Main Results:

• Families face significant barriers including transportation issues, job pressures, inconsistent communication, and lack of care coordination ownership.
• Hospital processes like scheduling, prior authorizations, and documentation place undue burdens on families.
• Challenges are often misattributed as caregiver deficits, leading to punitive rather than supportive interventions.

Conclusions:

• Reducing administrative workload is essential for improving patient safety and preventing harm in pediatric care.
• Actionable interventions include reframing documentation, redistributing care coordination tasks, and standardizing hospital processes.
• Addressing administrative workload is key to advancing health equity for children with medical complexity and their families.