Deaf patients with cancer report difficulties understanding treatments, procedures, and risks related to cancer.
Receiving a cancer diagnosis can be confusing due to the immense amount of knowledge needed to understand the disease itself and various treatment options. Many patients rely on a support network of loved ones, physicians, and online information to navigate the diagnosis.
For deaf patients with breast cancer, these channels may result in questions that remain unanswered, resulting in knowledge gaps, according to a study published by the Journal of Health Care for the Poor and Underserved.
“Knowledge about breast cancer is low in this population and many misconceptions about this disease persist,” said lead researcher Barbara Berman, PhD.
These observations motivated researchers to identify and address unmet informational needs of deaf women with breast cancer.
In previous studies, the team identified gaps in general cancer knowledge in the deaf population.
“Deaf cancer patients in particular, but also deaf patients, are a high-risk population for poor healthcare utilization and outcomes,” said researcher Philip Zazove, MD. “This research lays the groundwork for possible interventions to improve health care for people with hearing loss of all levels.”
The current study focused on the experience and hurdles faced by deaf cancer survivors. The authors found that knowledge gaps persisted regarding diagnosis, treatment, and recovery, despite having multiple people in the health care system they could talk to, according to the study.
Notably, a single cancer survivor indicated she was unaware of what cancer was, while others held uncertain or inaccurate understanding of their medication, procedures, and risks related to breast cancer.
Gaps in basic knowledge highlight areas that frequently break down with communication between deaf patients and providers, according to the study.
Patients reported that their providers would not communicate with them or they communicated through note taking or lip reading, despite patient preference for American Sign Language.
The lack of communication resulted in deaf patients feeling that providers did not want to communicate with them because of their condition, according to the study.
Additionally, the authors found that interpreter services were not always available, with 2 patients receiving the services only after mentioning the legal requirement for language accommodations under the Americans with Disabilities Act, according to the study. Patients also reported using family or friends as interpreters.
These findings suggest that more steps are needed to ensure that deaf patients with cancer receive the necessary information to make proper treatment decisions and understand how the condition may affect them.
“Provision of linguistically and culturally adequate health information and services is crucial to the health and well-being of this population,” Dr Berman concluded.