Barriers to accessing formal cancer care from the perspective of informal caregivers: a qualitative study.

backgroundCancer is a significant public health concern in Chile, with breast and lung cancers being among the most common and deadly types. Informal caregivers provide essential healthcare procedures and physical, emotional, and financial support to cancer patients, taking on significant responsibilities they must balance with their lives. Many of these responsibilities are directly related to healthcare and patient care processes, so the healthcare system is critical to the caregiver's experience. This study aims to identify health system barriers in the healthcare of lung and breast cancer patients through the voice of informal caregivers in Chile.

methodsAn exploratory qualitative case study design was used, following the COREQ criteria. Twenty informal caregivers of adult breast and lung cancer patients were recruited from different regions of Chile through snowball sampling and online outreach. Semi-structured interviews were conducted between March and June 2023. Data were analyzed using deductive thematic analysis guided by Tanahashi's effective coverage framework, which focuses on four dimensions of healthcare access: availability, accessibility, acceptability, and contact. Atlas.ti software was used for coding and thematic organization.

resultsCaregivers reported significant barriers across the four dimensions: (i) availability, lack of medical equipment and home care resources, especially in public hospitals; (ii) accessibility, long wait times, fragmented care across institutions, and high out-of-pocket costs, particularly for those outside the public health insurance (FONASA) coverage; (iii) acceptability, inadequate communication from healthcare providers, with limited information on diagnosis and prognosis; (iv) contact, poor continuity of care, with a lack of coordination between healthcare providers, leading to feelings of isolation and frustration among caregivers.

conclusionsThe study reveals critical gaps in Chile's healthcare system. Caregivers play an essential role in patient care but receive insufficient support from the healthcare system. Addressing the identified barriers, including improving communication, coordination, and support for caregivers, is crucial for achieving better healthcare outcomes and reducing disparities in cancer care. These findings have significant implications for policymakers, highlighting the need for reforms to support caregivers and enhance the cancer care continuum in Chile.