Dianne Uwayo (NHC 2015-2016) reflects on the impact of a professional development opportunity she pursued with support from an NHC Alumni Grant.
“Remember folks, we’re not writing sonnets!” was a common refrain I heard during my time at the Oregon and SW Washington Health Literacy Conference. As a writer for whom English is their second language, I have a deep appreciation for English and love crafting compelling narratives. The conference, however, fully etched in my mind that in healthcare and health education, there is no room for flowery prose and complex sentences, but instead a need for clear, plain language.
The World Health Organization defines health literacy as "the cognitive and social skills which determine the ability of individuals to gain access to, understand and use information in ways which promote and maintain good health."1 Individuals with low health literacy have a greater risk of hospitalization, are less likely than others to seek preventative care, and experience worse health outcomes overall.2 Vulnerable populations include low-income individuals, immigrants, refugees, minorities, and older adults.3 Fortunately however, low health literacy is no longer viewed as a problem rooted in an individual’s lack of health knowledge, but rather a larger systems-level issue. As a result, public health professionals have a role to play in addressing it.
The conference brought together public health educators, practitioners and policymakers within the field of health literacy to share core principles, research and evidenced-based practices. The first day consisted of a hands-on workshop with two learning focus areas:
- How to create health-related content (medical forms, health education materials etc.) that can be understood by all
- How to use that same content to educate and improve health literacy
Key to creating content is following the "5 Elements of Plain Language":
- Friendly tone
- Active voice (address the reader directly)
- Brief and concise paragraphs
- Simple sentences
- Familiar words (for example, use ‘proof’ instead of ‘verification,’ ‘before’ instead of ‘prior to’ etc.)
Easy enough, right? No! I found the process to be very difficult. In small groups, we had the opportunity to rewrite real-world medical forms using the 5 elements. There was a tension between wanting to include all the pertinent information, and needing to be clear and concise. We had to critically examine every sentence. One example that I loved (which a member of my group pointed out) was the phrase: “please reach out to our office with any questions.” She explained that this expression – "reach out" – might be unfamiliar and confusing to a non-native English speaker. Instead, we replaced it with the clearer and actionable, “please call our office with any questions.”
The workshop also revealed how to write in a way that educates and thus elevates health literacy. For example:
Instead of: Stone disease is one of the most painful and prevalent benign urological disorders.
Use: Stone disease is common and painful. It is benign (not cancer). It affects the urinary system that gets rid of waste of your body.4
Not only does the second example use clear language, it defines "benign" and explains the main function of the urinary system. The hope is that an individual reading this will better understand their diagnosis and learn key health terms, improving their health literacy.
The following day built upon the workshop with engaging keynote speakers, a poster exhibit highlighting work being done internationally in the field of health literacy, and various breakout sessions. Among my favorite was entitled, “The Power of the Narrative to Create Change Though Improved Health Literacy,” presented by Dr. Andrew Pleasant, Senior Advisor of Health Literacy Media. He spoke of how he uses participatory community storytelling to raise health literacy and impact behavior change. In Lima, Peru, his team addressed poor household hygiene by empowering community members to develop a theater production around best hygiene practices. Inspired by the work of Brazilian philosopher Paulo Freire, Dr. Pleasant left us with this sentiment that I will take with me in my future public health work: “All literacy efforts must begin with the words of people’s experiences – not the words of a teacher, a doctor, a public health professional, or a politician.”5
At the end of the two-day conference, I remember thinking that I had never been this engaged at a conference! Perhaps because it spoke to my experience. Like many refugee and immigrant children, I grew up helping my parents navigate the healthcare system. This meant decoding instructions on medications, figuring out how to reapply for Medicaid, and attending appointments to make sure my parents were heard. This was often heavy and difficult. I walked away from the conference, however, with a sort of peace about those experiences and excitement that there was real work being done around health literacy and supporting individuals as they navigate healthcare.
Among those doing the work are Lisa Colella Danlly, Mahad Hassan, and Hakimi Thang from Lutheran Community Services Northwest – Portland. LCSNW is a nonprofit refugee resettlement agency in Portland, Oregon. Lisa serves as Program Manager for community-based mental health services while both Hakimi and Mahad are Peer Support Specialists. All play a key role in assisting newly arrived refugees bridge the language and literacy gap to access healthcare.
I had the opportunity to speak with them about the intersection of health literacy and the refugee experience. The discussion began with an acknowledgement of how diverse new refugees are in terms of literacy – not just health literacy. A university professor from Burundi with high literacy in her native language and a good handle of English might face different experiences than a single father from Yemen with limited literacy in his native language. The question then becomes how to serve them equitably.
One way to do so is by having many people at the table when developing health content. Take, for example, LCSNW’s Refugee Health Screener-15. The mental health screening tool has been translated into 12 different languages through an extensive process that brings together at least five native speakers to discuss and come to a consensus on wording. Mental health in particular is a difficult subject to translate as there are many defined terms in English that are not found in other languages. The collaborative spirit and extensive pre and post-testing of the screening ensures its validity and that those being screened fully comprehend the questions.
LCSNW also uses imagery and logos whenever possible to convey information, thus reducing literacy barriers. This is evident in a service map provided to newly arrived refugees that guides them on where to receive needed services – from food and housing resources to legal aid. I particularly appreciate this snippet of the map as it makes a distinction between primary health services and mental health, while acknowledging that both are important pieces of health and wellness.
This past fall, I completed Doulas of North America (DONA) Doula training with a special focus on providing practical and emotional support to women from marginalized communities. I am particularly interested in serving immigrant and refugee women. The skills and best practices I learned at the conference and in my conversation at LCSNW will undoubtedly inform my doula work.
The conference forced me to pause and acknowledge that I truly need to be intentional with language when supporting parents. This means finding and creating effective materials to explain the birth process, advocating for patients at prenatal appointments and checking in with them to ensure they understand the ways in which their bodies are changing.
Developing a birth plan with a person who will give birth provides a particularly unique opportunity to not only educate, but empower people to make decisions about their labor. The conference reinforced for me the notion that to make an informed decision one has to not only know, but truly understand their options. With that, the conference has further grounded me in my role as a doula.
I plan on taking this newfound zeal for health literacy promotion and sharing the skills I learned at the conference with my local doula community. I hope that it has a positive impact on the interactions between doulas and their clients, promoting effective health education and health literacy in the area.
Citations:
1 “Health Literacy and Health Behaviour.” World Health Organization. 2009. Web. https://www.who.int/healthpromotion/conferences/7gchp/track2/en/
[2, 3] “Health Literacy Interventions and Outcomes.” Agency for Health Care Research and Quality. 2011. Web. https://www.ahrq.gov/downloads/pub/evidence/pdf/literacy/literacyup.pdf
4 “Understanding Basic Concepts: Plain Language and Readability.” Joan Winchester and Nicole Donnelly. 2019. PPT.
5 “The Power of the Narrative to Create Change Through Improved Health Literacy.” Andrew Pleasant, Ph.D. 2019. PPT.