Abstract Children with medical complexity (CMC) have chronic conditions with multisystem comorbidities requiring high-intensity, coordinated care. A substantial yet often invisible aspect of this care is the administrative workload borne by parents and caregivers. This ‘unseen and undervalued work’ encompasses the relentless administrative labour required to secure services, complete forms, manage appointments, advocate across fragmented systems, and coordinate supports frequently without adequate guidance, resources, or recognition. The consequences for families are profound: lost income, burnout, foregone care, and widening inequities, particularly among structurally marginalized families. Although administrative workload also greatly affects healthcare providers, contributing to increased coordination time and strain, the least acknowledged burden falls on caregivers themselves. This commentary illustrates the scope of caregiver administrative labour for CMC, underscores its disproportionate impact on those facing structural inequities, and offers a call to action across research, clinical practice, health systems, and policy. Recognizing, measuring, and addressing this burden is essential.
Do et al. (Tue,) studied this question.
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