Caregiver experiences of healthcare-related administrative burden: a scoping review

Patients with chronic disease often face administrative burden (eg, dealing with insurance paperwork) that affects their health and their care. Informal caregivers (family and close friends) provide important support to patients, but little is known about how they help patients address administrative burden.

To address this gap, we conducted a scoping review about caregivers' experiences of healthcare-related administrative burden using Herd and Moynihan's Administrative Burden Framework, which describes learning, compliance, and psychological costs. We reviewed US-based studies about caregivers' experiences of healthcare-related administrative burden when caring for adults with a range of health conditions.

Eighteen articles met criteria. More than half were qualitative, and most involved caregivers for cancer patients/survivors. A minority were informed by a theory or conceptual framework. Learning, compliance, and psychological costs tended to overlap. Caregivers often reported that compliance activities such as navigating insurance caused distress and affected their own health.

This review-the first, to our knowledge, to characterize the literature about caregivers' experiences of administrative burden-shows caregivers report overlapping burdens in a range of caregiving contexts. As this work matures, theoretically informed research is needed to develop and test interventions to mitigate administrative burden for patients and caregivers.