Assessing and Providing Culturally Competent Care in Radiation Oncology for Deaf Cancer Patients

Abstract

While recognition of disparities in outcomes for many vulnerable populations in the field of oncology is increasing, little attention has been paid to the outcomes of deaf patients. At least a million Americans identify as culturally Deaf and utilize American Sign Language (ASL). Studies have identified poor linguistic and cultural competency among physicians as a significant barrier to care delivery for these patients, placing them at risk for treatment related disparities. To better educate Radiation Oncologists (RO) regarding the unique needs of this cohort, we performed an evidence-based literature review of culturally competent care for deaf patients with the goal of improving patient care and delivery. A systemic literature search was conducted using PubMed for publications after 1990 in English with the search term: “deaf AND cancer.” Then, “deaf” was interchanged with keywords such as “hard of hearing,” “hearing Loss,” “hearing Impaired,” “ASL,” and “deaf culture.” Articles were included if: (1) the study reported on survival, local control, and toxicity outcomes with various treatment modalities; and (2) identified cultural or linguistic barriers to oncological care and at what level such barriers occur. Publications were excluded if they reported on deafness as a side effect of treatment, or reported on outcomes or barriers in deaf patients with non-malignant conditions. The search resulted in 1105 articles and 37 articles from 2000 to 2018 met inclusion criteria. 35 articles were public health observational or interventional studies and 2 were retrospective series. Poor health literacy, accessibility to providers or resources in preferred language (ASL i.e.), and limited cultural proficiency of health care providers were identified as barriers to care. Deaf patients may have a delay in cancer diagnosis but we did not identify any articles reporting on outcomes with surgery, systemic therapy, or radiation for deaf patients with any malignancy. While legal and national recommendations for accessible care exist, no oncology-specific guidelines exist with regard to care delivery for deaf patients with cancer. We propose the need for a care model for the RO that provides guidelines on creating effective and total communication accessibility for deaf patients, and addresses the cultural and linguistic heterogeneity within this cohort, taking into account factors that can influence the physician-patient relationship including familial, cultural, health literacy, and socio-economic dynamics. The model should provide guidance on implementation of resources and training for ROs and how their respective institutions and staff can help create inclusive care environments. The clinical outcomes of deaf patients with cancer remain poorly characterized, highlighting the need for a care model for ROs to guide the provision of culturally competent oncological care for deaf patients.