The Aha! Moment of Not Knowing
by Marguerite DeBello, PhD, RN, ACNS-BC, CNE
I would like to admit something … I don’t know everything. This past summer, my mother ended up in the Intensive Care Unit (ICU) with an unusual infection in her neck and throat resulting in her intubation. This was complicated by her respiratory sarcoidosis. ICU is not my background. As I sat there, the physicians and nurses were trying to explain to me what was going on. I realized that at this moment in time I was no longer the nurse, educator, and expert I like to think of myself as. You see, there were technology and protocols that I had only read about but never experienced. It brought fear and trepidation to my mind as I tried to be brave. Health literacy can be situational (Halm, 2021). The environment being strange, the stress and fear combined to limit my health literacy. My ability to make decisions regarding life-sustaining treatment, understand the implications, and grasp what was happening was severely affected. The health literacy of the caregiver can influence how the patient does long term (Wittenberg, et al., 2017). I was quite humbled by this event. I have to admit, I didn’t know what was happening at times, and I was having a difficult time making decisions.
Health Literacy Needs Identified
In addition, I was the family spokesperson for my mom. My father, you see, is also chronically ill with diabetes and kidney disease and is experiencing signs of early dementia. I needed to be two people, one for my mom and one for my dad, who was also unable to do things for himself. I went to work teaching my young adult sons how to provide his needed care, check his blood sugar, and give insulin. I was relatively successful but saw the differences in each one I taught and how much I needed to explain in clearer terms.
The next item on my agenda was that I needed to explain things to my dad in a way not to freak him out and to my two younger brothers who are non-medical and not local. I failed miserably at first. Let me tell you about my journey through illness and the limited health literacy I experienced.
Health literacy is linked to health outcomes. These health outcomes can greatly be influenced by the caregiver assisting patients with meeting care demands of chronic illness (Yuen et al., 2018). I serve both in a formal role as a nurse and informal role as the caregiver for both my parents. When my mom was critically ill, it fell on me to try to explain why she was intubated, and why she may need a tracheostomy and other healthcare actions. For example, the ICU team addressed Mom’s need for nutrition early and put down a nasogastric tube to feed her. I did not give it a second thought. However, when I talked to my dad about it, he was extremely upset. His understanding of feeding tubes was that the person who gets a feeding tube was going to die. He based this on his own experiences with friends and family. I had to spend quite a bit of time calming him down and doing damage control. I made a huge mistake in assuming he understood the purpose instead of starting there and then telling him she had the tube inserted. I learned quickly how to share information with him and used my ability to address low health literacy. I am doing this daily even now since my mom is still not 100% and my dad still needs information.
I also realized I failed my brothers when giving them information. I assumed they knew what I was talking about. I told my brother about the possibility of the tracheostomy. He did not show any signs of worry. I thought he was just in denial. However, I soon learned that he didn’t have a clue, so when I talked to them further, I had to break it down even more to help them understand the severity of the situation. It was difficult. Because of COVID, only one visitor was allowed, so my brothers were dependent on me to paint them a picture of the situation. I failed miserably. I realized this when my mom came home, and they were surprised to see how bad she really was. I had to ask myself: Did I not provide enough information? Or was it just the shock of seeing her after a month-long ICU stay? I really don’t have the information to answer that question. This is where relational health literacy comes into play. Relational health literacy is how information is exchanged in the relationship (Halm, 2021). We take it for granted that if the caregiver at the bedside understands, they can communicate it to the rest of the family.
See, I had made a huge mistake. I assumed that since I understood or asked questions that my family would too. Family caregiver health literacy directly affects health communication to both care providers and other family members (Wittenberg, Goldsmith, & Parnell, 2020). I have to be kind to myself; I was a family member during this time period and not a provider. Since my health literacy is relatively high, I sought out information to help improve my understanding. The problem lies herein: My family didn’t know what they didn’t know. They did not know what to look up or what questions to ask. They were relying on me.
The Aha! Moment
This was a lightbulb moment for me, as I looked around the ICU. How many families there didn’t really understand what was happening? Did the ICU team assume that families did when they nodded their heads? Did the nurses take time to make sure the families really understood? Only those individuals can really answer that question.
Suggestions I have:
Always use plain language regardless of the person’s understanding. The stress alone often interrupts the ability to comprehend.
Chunk the information into smaller amounts.
Check in frequently so small changes can be addressed instead of many changes.
Reinforce the plan and information.
Make sure to evaluate understanding by asking what questions families have.
Take your time!
I realized that I need to make sure that I am educating other healthcare providers to not assume anything. I know I asked way too many questions about what was happening, but I was educating myself. Other families may not be able to ask those questions. The important fact learned here: Caregiver health literacy can directly affect caregiver burden (Barutcu, 2019). The higher health literacy a caregiver has, the lower the caregiver burden. Lesson learned. Providers need to take the time to ask those questions for the family and clarify them to ensure that they really understand. Doing this not only influences the health outcomes of the patient but also reduces the stress and burden felt by the informal caregivers (Barutcu, 2019). The patient and their family deserve it. I know my family and I did.
Demir Barutcu C. Relationship between caregiver health literacy and caregiver burden. P R Health Sci J. 2019;38(3):163-169.
Halm MA. When stakes are high and stress soars: addressing health literacy in the critical care environment. Am J Crit Care. 2021;30(4):326-330.
Wittenberg E, Goldsmith J, Ferrell B, Ragan SL. Promoting improved family caregiver health literacy: evaluation of caregiver communication resources. Psychooncology. 2017;26(7):935-942.
Wittenberg E, Goldsmith J, Parnell TA. Development of a communication and health literacy curriculum: optimizing the informal cancer caregiver role. Psychooncology. 2020;29(4):766-774.
About the Author
Dr. DeBello has been a nurse for over 36 years. Currently she is an Associate Professor of Nursing at Eastern Michigan University in Ypsilanti, MI. Her interest in health literacy started when working in an inner city hospital with head and neck cancer patients who often could not read or write. She identified the difficulty when they often had a tracheostomy as part of their treatment which made communication difficult. Finding ways to educate patients with low health literacy has been a passion for Dr. DeBello. Her dissertation focused on Health Literacy Knowledge, Application and Confidence among nursing students to explore whether nursing education was preparing nurses for addressing health literacy. Dr. DeBello has designed a health literacy elective for nursing students as a result of her research.