There is an extensive body of literature on health literacy and the impact case management may have on improving health literacy knowledge, skills, and abilities. The U.S. Department of Health and Human Services defines health literacy as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Office of Disease Prevention and Health Promotion, www.health.gov). “To make appropriate health decisions” is an outcome where the means are typically language, communication, knowledge and navigation of health system, understanding of mathematical concepts of risk, comprehension of basic biology, disease processes, and health topics (www.health.gov). I believe a case can be made to expand the competencies of health literacy to include a larger emphasis on cultural factors. To that end, should case managers assess health literacy from the perspective of Social Determinants of Health and a significant consideration of cultural factors that influence these determinants?
Healthy People 2020 describe five determinants as Economic Stability, Education, Social and Community Context, Health and Health Care, and Neighborhood and Built Environment (www.healthypeople.gov). “Culture” is typically a reference to ethnic beliefs and traditions, or lifestyle activities associated with a specific group. But are there other descriptors for culture that may transcend ethnicity or a specific group? For example, a culture of multigenerational poverty or environments of sustained and toxic stress? What about cultures evolved from generational cycles of abuse, discrimination, or societal wealth gaps? Consider generations of recurring victimization such as losses suffered from natural disasters, requiring individuals to cycle through devastation, recovery, or risk?
A recent experience as an observer and sideline participant in a friend's health care crisis inspired these questions. My friend is a well-educated mother and grandmother employed in the food manufacturing industry. I accompanied her through the stages of the diagnosis, treatment, and surgery for breast cancer. I consider myself to be well informed of human anatomy, disease process, patient response to treatments, postoperative care, case management, insurance plans and benefits, and, in this case, the local and health care community where all of these took place. However, both of us would have scored low on a health literacy scale if an assessment was conducted in the absence of cultural considerations as questioned earlier.
These were some of the questions and scenarios we were required to manage throughout this ordeal.
My friend was asked to make life-altering health decisions in real-time that would have permanent consequences for her future, during a mental state of extreme anxiety, emotional stress, and fear. She was faced with confronting her cancer diagnosis and treatment scarred with the recent memories of her mother's, father's, and sister's death from cancer. At the same time, her daughter's reaction to this generational diagnosis contributed to unimaginable stress and feelings of guilt.
While my friend was not too concerned with body image, people close to her could not imagine that she would “have these people cut a part of your body that God made.” Religious beliefs ran strong, and to a degree that was unfamiliar to me as a health care clinician. The breasts also represented a significant aspect of sexual identity to a single, mature woman who is seriously dating with lifelong partner intent. Thus, she lacked family support during this time due to “feeling judged.”
During the postoperative period, I prepared questions for my friend to ask the health care team. The questions related to anatomical location of the tumor and nodal involvement, drains, blood transfusions, and so on. The doctors' and nurses' consistent responses were “don't worry about all that stuff, it's too complicated for you to understand ... we will take good care of you.” I confirmed later that my friend did not recall explanations or options for surgery, but rather complied with the decision made for her. Yes, she gave consent to the surgery but it was based on the provider determination (because “her life was in his hands, so he knew best”). No if-this-then-that discussions occurred. Where does the health literacy responsibility lie if this is how “it's always done” at this facility?
My friend was given 2 days' worth of pain medication following a major surgery, including discharge home with three drains and collateral pain in legs. The reason given; there is a bad epidemic of drug overdoses in the town and many people sell the pain pills. When attempting to fill the prescription, the store clerk required a detailed description of the surgery, a pain score, and whether there was a prior prescription for the same surgery in the past. I asked why this information is required and where are the answers documented. The response: The pharmacist needed to know in order to determine whether this was a legitimate prescription or an unnecessary prescription that could contribute to the street epidemic of pill selling.
There were more examples. There was confusion about her job status since disability payments ceased. Was she terminated or in an unpaid leave of absence status? (She was too afraid to inquire.) Was health coverage in play and when would that cease? (She was paying premiums out of pocket.) Was it appropriate for the home health agency to change the nursing requirement from registered to licensed vocational nursing services, despite provider instructions? Was it acceptable to not address pain management with medications but rather instruct the patient to seek care in an emergency department instead?
In addition, the social environment did not lend well to recovery. As a victim of financial catastrophe that resulted in living arrangements with family members, my friend had little control of her postoperative environment. The cultural expectation is that you do not live with someone else “for free.” Therefore, “paying” for lodging not only is in the form of shared rent but also included as in-home childcare, cooking, and household maintenance. These activities were necessary despite recent discharge from hospital because “the other family member's work/financial situation can't change” to accommodate time to heal. There were many more examples of cultural norms at play.
I certainly do not intent to generalize this experience; however, I am aware of other patients, friends, family, and acquaintances with similar circumstances. The difference this time was that I, with my knowledge and experience, found it difficult to break through the cultural realities of the environment and norms of the health care system within this environment. After many attempts to first facilitate literacy directly with my friend and then later advocate for her after afforded temporary power of attorney, I only succeeded after presenting my professional credentials and demonstrating my knowledge of the subject matter at hand. Prior to that, my challenges, questioning, and knowledge seeking were dismissed outright and opportunities for influencing health literacy were not engaged.
How can we become change agents? It begins with cultural sensitivity and active listening to discern the influence of culture on social determinants. Recognizing that social determinants impact health literacy, it is important to understand how these determinants are actualized within the context of not only the patients' culture but also the culture in which the health care system operates. There may be barriers that are broader than language or educational level or ability to communicate because of cultural norms. Patient engagement may be stifled because of fear, anxiety, or guilt as opposed to a lack of health literacy. Simply functioning at Maslow's lower hierarchy of needs may affect capacity for health literacy.
Case managers are influencers. How can we ensure that cultural sensitivity, competency, and social determinants are baked into assessments of health literacy? If we are successful with influencing health care professionals and care teams to embrace an expanded view of health literacy, positive patient outcomes may be achieved sooner and more consistently. I advocate for more research in this area.