The unseen and undervalued work of families with children with medical complexity: Addressing administrative workload...

Area of Science:

• Healthcare Management
• Pediatric Care
• Health Equity

Background:

• Children with medical complexity (CMC) require high-intensity, coordinated care due to chronic conditions and multisystem comorbidities.
• Parents and caregivers bear a substantial, often invisible, administrative workload to manage this care.
• This administrative labor includes securing services, form completion, appointment management, and inter-system advocacy.

Purpose of the Study:

• To illustrate the scope of caregiver administrative labor for CMC.
• To underscore the disproportionate impact on structurally marginalized families.
• To call for action in research, clinical practice, health systems, and policy.

Main Methods:

• This commentary synthesizes existing knowledge and highlights the multifaceted nature of caregiver administrative tasks.
• It analyzes the consequences of this burden on families, including financial strain and burnout.
• It examines the impact on healthcare providers and the system.

Main Results:

• Caregiver administrative labor is extensive, often performed without adequate guidance or recognition.
• Consequences include lost income, burnout, foregone care, and exacerbated inequities for marginalized families.
• Healthcare providers also experience increased coordination time and strain.

Conclusions:

• Recognizing and measuring caregiver administrative workload is essential.
• Addressing this burden requires a multi-pronged approach involving research, clinical practice, health systems, and policy changes.
• Mitigating this burden is vital for supporting families and promoting health equity.