Looking back on the incident, Mary reflects that she was surprised by the intensity and stress of it all. “My husband and I both have college degrees, are well read and at the top of our respective fields in business, but the language that was being spoken to us that day and every day after was foreign. We had no idea if what they were suggesting was correct, so we had to trust in their expertise and go on blind faith. I was armed with a pad of paper and pen at all times to write down my questions and keep track of the answers, even though many times the answers just raised more questions.”
It wound up being a 2-week stint in the hospital, with several more respiratory emergencies.
Amelia lost 18 pounds, was terrified of taking a deep breath, and was anxious upon her discharge. She had tons of follow-up appointments, medications, special machines for breathing and coughing, and all of it had to be done on a schedule. “It took three carts to get us from her hospital room to the car and once we were home and unloaded, I didn’t know if I could do it,” said Mary. “The information sheets that were provided at discharge were a confusing string of terms, medicines, and appointments. I had to make a spreadsheet to keep track of it all.
“One saving grace was our decision to call a trusted friend, who is a medical provider, after Amelia was sent to the hospital from the urgent care. We knew that we needed expert guidance outside of our healthcare team to answer all the questions that we had forgotten to ask when the doctor was in the room. She became a sounding board for us and gave us reassurance when things got dicey and the days dragged on. I call her my medical translator. When I didn’t understand the why and the how of what was being done, she was there to help us sort it out, and once we came home, she helped us know what was normal and prevented us from having to return to the emergency room.”
59 Case Studies
▸ The Overview
When we compare these two cases it would be simple to say that one had a devastating outcome and one did not. Or that the primary difference is that one family would be considered poor with limited resources while the other has ample access to providers and treatments. However, when you apply the broader concept of the health literacy lens to both cases you can see that there are similar issues plaguing both families.
The resounding parallels in these cases is the need for more clarification and education. Using a screening tool for health literacy would have demonstrated the necessity for intervention with both families. While Amelia’s parents may be at a Level 5 literacy rate, they still had great concern and confusion regarding interventions and therapies. Improved communication between the staff and the parents could have avoided the need for them to seek outside guidance and given them greater confidence during the process of the illness. A quick evaluation of Edgar would have re- vealed that his literacy level was between a 2 and 3 and that his capacity to process complex med- ical information and make appropriate and informed health decisions was lacking. Dispatching a patient advocate to help him navigate the process and ensure that his needs both during and after the hospital stay were met could have prevented his tragic outcome. A dear patient once told me,
“If I don’t know the questions to ask, how am I supposed to get better or do what I am supposed to?” How indeed!
▸ The Smartphone Evolution in Health Literacy
As providers, the use of effective communication is an essential key to the formation of trust among clients. When patients have a clear understanding of the expectations and anticipated outcomes, it can yield positive results. Greater access to healthcare teams where clarifying questions can be
TABLE 5-1 Comparison of the Two Cases
Edgar and Lilly Amelia
Inadequate resources for medicines and therapies following surgery
Delay in treatment of underlying condition despite office visit and initial treatment of presenting symptoms Inability to truly understand the
complexity of the medical situation at hand
Difficulty understanding the complexity of the medical situation at hand
Confusion regarding procedures and discharge information
Confusion regarding procedures and discharge information
Hardship of medical facilities being
> 60–90 minutes from their home with multiple follow-up appointments
Hardship of multiple follow-up appointments that are
> 30–60 minutes from their home 60 Chapter 5 Health Literacy: Through the Lens of One Provider
asked and answered and patients can be seen at a moment’s notice would help to bridge the gap.
So, how do we accomplish this goal? We must look toward digital communication.
One such model that is embracing borderless and on-demand care is the Virtual Clinic plat- form at the University of Southern California (USC). They are experimenting with a concept that renders more flexible health care through digital innovation (Peden & Saxon, 2017). Their patients do not have to present to a brick-and-mortar location. Instead they can receive real-time care when they need it.
Since so many patients struggle with access to care for a variety of reasons (transportation, hours of clinics, lack of proper coverage, etc.), this would enable clients to tap into care from any- where at any time utilizing a smartphone. According to the 2016 World Development Report, more people in the world have access to mobile phones than they do indoor plumping or clean water (World Bank, 2016). So, even the poorest patients can obtain technology that is handheld, always with them, and easily connected to the Internet or Wi-Fi. Enabling applications that are designed to interact with patients who have known low levels of literacy would allow clients to use pictures and images to communicate their problems more effectively with their healthcare team. The goal of the USC clinic is to construct a virtual experience for patients, caregivers, and medical profes- sionals to provide on-demand services anywhere at any time to anyone using a variety of digital modalities (USC Center for Body Computing, 2017). Combining this technology with a tele-health model whereby patients and providers can see each other and interact across the screen would allow for better communication as well.
▸ Conclusion
Addressing health literacy is a crucial public health initiative. Effective and purposeful communi- cation between all members of a healthcare team is essential to success. Everyone involved in the patient’s care must be able to speak efficiently and respectfully about the patient’s conditions and take the time to gauge understanding. In my personal experience, I often ask the client to recap the plan for me prior to the end of my visit so that I know we are on the same page.
The World Health Organization (WHO) has estimated that “if the major risk factors for chronic disease were eliminated, at least 80 percent of all heart disease, stroke, and type 2 diabe- tes would be prevented, and more than 40 percent of cancer cases would be prevented” (WHO, 2005). We can achieve this dream. Health care must shift its focus and our patients need to be empowered and take ownership of their care, but they can only do so if they are involved in the process on a level that makes sense to them. While we wait to see if virtual and tele-health clin- ics can become widely accessible, we will need to make appropriate adjustments in our own prac- tices to curb the deficit.
The CDC offers six online health literacy courses for health professionals. They discuss how to communicate in plain language and review writing and speaking with the public. This is a great place to start to tackle our gaps and reinforce tactics that will help us achieve a healthier popula- tion. It all begins with us; the providers on the front lines.
Link for the CDC training module for health literacy: https://cdc.train.org/DesktopModules/eLearning /CourseDetails/CourseDetailsForm.aspx?courseid=1057675
Conclusion 61
References
Centers for Disease Control and Prevention. (2017). Health literacy. Retrieved from http://www.cdc.gov/chronicdisease /overview/
National Center for Education Statistics. (2014). Adult literacy in America. Retrieved from https://nces.ed.gov/
National Center for Education Statistics. (2017). Program for the international assessment of adult competencies. Retrieved from https://nces.ed.gov/
Peden, C. J., & Saxon, L. A. (2017). Digital technology to engage patients: Ensuring access for all. New England Journal of Medicine Catalyst. Retrieved from https://catalyst.nejm.org/digital-health-technology-access/
Rudd, R. (2014). Health literacy research findings and insights: Increasing organizational capacity for shaping public health messages. Retrieved from https://www.cdc.gov/healthliteracy/learn/
Tieu, L., Schillinger, D., Sarkar, U., Hoskote, K., Hahn K. J., Ratanawongsa, N., . . . Lyles, C. (2017). Online patient websites for electronic health record access among vulnerable populations: Portals to nowhere. Journal of the American Medical Informatics Association, 24(1), 47–54.
University of Southern California Center for Body Computing. (2017). Virtual care clinic. Retrieved from https://www .uscbodycomputing.org/virtual-care-clinic-2/
World Bank. (2016). World development report. Retrieved from http://documents.worldbank.org/curated/en/896971468194972881 /pdf/102725-PUB-Replacement-PUBLIC.pdf
World Health Organization. (2005). Preventing chronic diseases: A vital investment. Retrieved from http://www.who.int /chp/chronic_disease_report/full_report.pdf
62 Chapter 5 Health Literacy: Through the Lens of One Provider
▸ Introduction
The nature of bullying speaks to the heart of vulnerability in that the strong prey on the weak.
Although bullying can occur within a variety of contexts, this chapter focuses on the bullying of children because when young children are bullied, they carry the stigma throughout their lives, and the long-term consequences have serious implications for their future behavior.
To proactively provide a safe learning environment and ensure the long-term welfare of our children in the public school system, we must scrutinize all elements of violence taking place in our schools. There is no escaping the gruesome headlines from Sandy Hook Elementary to Parkland High School. The images are forever burned in our minds: the senseless loss of children, grieving parents, educators, and families. During the 1960s, 1970s, 1980s, and 1990s the level and rate of school violence has escalated from 10 to 30 deaths per year to an all-time high of 256 deaths be- tween 1990 and 2000 (“History of School Shootings,” 2018). It has become an everyday tragedy in this country and parents worry about sending their children to school, and they should worry.
Research shows alarming statistics about bullying and its long-term consequences. About 40 per- cent of school shooters studied by psychologists, some after the fact, had experienced bullying (Langman, 2018). Some victims of bullying don’t just become homicidal; up to 25 percent of chil- dren bullied become suicidal (Copeland, Wolke, Angold, & Costello, 2013). Until we can under- stand the dynamics of bullying, we will continue to fail to intervene effectively.
OBJECTIVES
At the end of this chapter, you will be able to:
1. Define bullying and identify key characteristics.
2. Recognize bullying of children has long-term consequences.
3. Understand that policies alone do not fill the gap in intervention.