The Impact of Structural and Meso-Level Factors on Caregiver Coping Abilities When Supporting a Child with Cancer: A Qualitative Study

Abstract

Family caregivers of children diagnosed with cancer often experience periods of significant stress. We provide an in-depth examination of the impacts of structural (health care and leave policies) and meso-level (organizations and communities/social networks) factors on caregiver coping during childhood cancer treatment. We conducted a secondary analysis of a comprehensive qualitative dataset examining the impacts of structural and meso-level factors on caregiver coping from in-depth, semi-structured interviews with 49 caregivers representing 38 unique cases of childhood cancer. Using a modified grounded theory approach, transcripts were analyzed using inductive thematic analysis. Caregivers experienced multiple and often intersecting structural and meso-level factors, both facilitating and impeding their ability to cope during their child’s cancer treatment. Our analysis revealed the following themes: having few out-of-pocket medical expenses, access to paid time off from employment, and support from one’s health system, organizations, or community/social networks fostered caregiver coping. Significant financial burdens due to cancer treatment, having to take unpaid leave from employment, remaining employed regardless of one’s circumstances, and lack of support from one’s health system, organizations, or community/social networks hindered caregiver coping. Our findings point to several policies that may ease caregiver burden and facilitate caregiver coping during childhood cancer treatment.