In Their Words: The Barriers to Mental Health Service Use in Breast Cancer Survivors – and What WeCan Do to Help

Abstract

With over 4.1 million in the United States, breast cancer survivors (BCS) have been found to be at increased risk for psychological distress, including severe depression and anxiety. Fear of cancer recurrence (FCR) is an especially prevalent form of distress in many cancer survivors, with approximately 50% of BCS reporting clinically significant FCR. To address this unmet need, a randomized controlled trial (RCT) comparing 3 FCR interventions is currently being conducted with 384 early-stage, post-treatment BCS with clinically significant FCR. A secondary analysis of data collected from self-report questionnaires at baseline in this RCT revealed that 226 (58.9%) participants reported clinically significant levels of at least one form of psychological distress (depression, anxiety, and post-traumatic stress symptoms) in addition to clinically significant FCR. Despite this, only 61 participants (20.47%) reported using any mental health services (MHS) within the 3 months prior to baseline. This project aims to elucidate the barriers to MHS use in BCS through qualitative interviews. Interviews with distressed BCS have revealed a plethora of personal and systemic barriers contributing to underutilization of MHS. Common themes have been identified through qualitative analysis. Deeply intertwined with FCR, avoidant coping was a prevalent barrier for many survivors. Financial constraints were voiced, particularly the fear of not finding a compatible provider who is also covered by insurance. Scheduling barriers due to work and family responsibilities on top of an already exhausting list of medical appointments were expressed. Sociodemographic factors were discussed as well, such as inaccessibility to providers speaking the survivor’s first language. Even for BCS who reached out for MHS, many were discouraged by the lack of providers accepting new patients. In addition to pinpointing such barriers, valuable suggestions for improvement were obtained that may allow current and future healthcare providers to better address the holistic needs of BCS.