Perceptions of Diabetes Education Among East African Immigrant Parents

Kristi Klee, DNP, MA, MSN, RN, CPN; Karen Thomas, PhD, RN; Deann Atkins, BSN, RN, CDE; Kathryn Ness, MD, MS


Pediatr Nurs. 2020;46(3):146-151. 

In This Article


This project focused on East African families who received diabetes management education in response to clinical nurse concern for adequacy of training. The aim was to explore families' perceptions of the training they received and their ability to transfer the learning to home. All families in this study were at risk for health literacy concerns because English was not their primary language, many were new to the United States health care system, all were challenged by the insulin dosing calculations, and all described the confusion surrounding the diagnosis of diabetes and the complex care needs of their child. Most notable is the description of needing time to accept the diagnosis, to process through the feeling of disbelief before being able to take in the information needed to care for a child with diabetes: "I couldn't even believe, I was like, is this real? Is this real? Then I realized that diabetes did exist, and then, I decided to help her."

The diabetes management education curriculum is covered in 1- to 3-hour blocks over a three-day period in addition to assessment by an endocrinology social worker and nutritionist. Curriculum is taught in English, and interpreters are used to translate information to families. Clinical nurses reinforce family learning through return demonstration of skills learned in "diabetes class" at meal and snack times. The curriculum is standard and includes all information diabetes educators believe a patient and family need to know to adequately manage diabetes. Interviews identified the impact of LHL and our health care systems focus on short hospitalizations on the East African families. Caregivers described a period of surprise and disbelief at the diagnosis of diabetes, and associated fear and feeling overwhelmed. While the family is processing the diagnosis and feeling overwhelmed, the health care team is focused on teaching diabetes management using a standard approach and timeline. The pace of the information in the setting of LHL adds to the confusion and caregivers' belief that "their brain is not understanding." Caregivers described needing time to recognize the diabetes diagnosis is real before they were able to engage in understanding and demonstrating diabetes management for their child. Decreasing the burden of diabetes content may decrease the knowledge gap felt by caregivers. Simplifying content with tools, such as the insulin dose "chart," which all caregivers spoke about, may reduce the stress of learning complex content in the setting of LHL. Reviewing content of the standard diabetes curriculum to include "need to know" for transition home and cover other content over time in clinic may be a way to lessen the burden of new knowledge.

In general, caregivers were appreciative of the diabetes education and support, but acknowledged our lack of understanding of their lifestyle, "they are teaching us, but they do not understand how we live." This was apparent in descriptions of managing carbohydrate counting and scheduled meals in the hospital, and the complexities of trying to transition this to home traditions and foods. This finding is supported in a study of Somali children with diabetes where researchers were examining cultural and religious beliefs related to diabetes in an effort to improve diabetes outcomes. In this study, they found diabetes treatment generally fit into the traditional lifestyle; the exception was the challenge in carbohydrate counting for foods in the traditional Somali diet (Sunni et al., 2015).

Feedback from interviews provides information that supports the clinical nurse concern that the information provided was not meeting the needs of the East African families in the care of their child with diabetes. This learning from this project will be used to collaborate with diabetes educators on reviewing diabetes content for all patients and consider what is needed to know for safe discharge home and what material can be reviewed later in a follow up class or clinic visit. Clinical nurses are best positioned to collaborate with diabetes educators to provide teaching that meets the needs of the caregiver. It is in the space of caring for the patient and discussing insulin dosing and complications, such as hypoglycemia, that the clinical nurse recognizes the unique needs of the family and when they are feeling overwhelmed with new information. The clinical nurses and the diabetic educator can then determine what need-to-know information is essential for a safe discharge home and focus on associated tasks.

This was a project initiated in response to clinical nurse concern for appropriate teaching content and style for East African families. The literature revealed no studies looking at the experience of families who have received diabetes management education for their children or perceptions of how the hospital education was transitioned into the home environment. Limitations to this project are the small sample size and the difficulty found in interviewing through various interpreters versus using a single interpreter for all interviews. Families interviewed were gracious and interested in sharing their experience in hopes of helping others. The open-ended interview questions allowed for the opportunity to hear their concerns and provide an opportunity to improve diabetes education. Consi dering cultural nuances and questioning what a family needs to know to successfully care for their child at home is an important outcome of this project.