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

Disclosures

Pediatr Nurs. 2020;46(3):146-151. 

In This Article

Results

During the three-month period, 10 families met inclusion criteria, but only seven families agreed to participate. One family received initial training out of state, and two families were not able to extend their time following the clinical appoint to attend an interview. Seven caregivers agreed to be interviewed, five mothers, one father, and one uncle. Findings were organized into two categories: adequacy of training and challenges to transition home. Adequacy of training was organized into four themes and 16 subthemes. Challenges to transition home was organized into four themes and five subthemes (see Table 1).

Adequacy of Diabetes Training

Readiness for Training. This theme was composed of four subthemes: overwhelmed, acceptance of diagnosis, change in life, and fear. Caregivers describe surprise and confusion at the diagnosis of diabetes and the need to get used to the diagnosis and be less fearful before they could focus on learning how to manage their child's diabetes.

I did not feel like I was there at the time; I was confused. My sister and husband listened a lot. They told me a lot. It was too much for me. I was scared. I have to get used to it (the diabetes diagnosis), then I will be able to understand.

The feeling of fear and being overwhelmed is common for caregivers of a hospitalized child. For the East African families, the intensity of fear was much greater, causing even small tasks to feel overwhelming. They described knowing they needed to learn about diabetes so they could care for their child but felt they could not focus on the many requests until they had time to accept what it meant for their child to have diabetes. One mother described feeling confused by all the hospital rules, by the frequency of people talking "at her," and feeling confused at what she was supposed to do.

I don't know what's going on here. They are talking and saying, "Here is your child's room, you have to get a badge, you have to be ready to learn how to take care of your child, here are some papers you will need." It is a lot. I am not getting it…

Difficulties Understanding Training Concepts. This theme was composed of four subthemes: new to measuring, complex math, overwhelmed, and pace of learning. Diabetes management education begins in the hospital shortly after diagnosis and is scheduled to be completed in three days. There is daily class time with a certified diabetes educator and return demonstration at mealtimes with the clinical nurse caring for the child. Caregivers describe this schedule and pace of learning as overwhelming with complex content.

I am seeing a lady every day, I am confused. They tell me a lot, but I am not understanding a lot.

Describing concepts that need to be learned, caregivers reveal initial confusion with measuring food to determine carbohydrates and calculating insulin dosing based on blood glucose and carbohydrates.

The food and sugar was very hard because in my country, we don't measure the food. They ask me what I cook, and I tell them pasta and injera, but they don't know how or where I make it. They handed me papers (recipe with carbohydrate count), they handed me a lot. They teach me; at that time, I was confused…

Caregivers describe the challenge in learning concepts when the diagnosis of diabetes is still new, not fully believed to be true, and information is at times perceived to be inconsistent and confusing.

It is very hard in the beginning. As a mother, you are in front of your child, and they have been diagnosed with diabetes; it is a shock, and you really have to understand about diabetes. But when you inquire about diabetes with different people, they will tell you all kinds of things. The different information you get is overwhelming for your brain, your mind. But you need to use your mind logically and rationally because if you do not you get overwhelmed and may not understand.
At first it was unbelievable…I could not believe that when they said that she has 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.

Cross-cultural Challenges to Training. This theme was composed of three subthemes: traditional foods, measuring portions, and pace of teaching. Caregivers talked about complexities of translating learning about carbohydrates and insulin using hospital food to home. Cooking traditional East African foods and schedule of eating at home was very different from the schedule and food in the hospital. Traditionally, Somali men eat first followed by women and children. Women and children eat together, sharing the meal from one large plate set in the center of the table. The mothers described cooking large "pots" of soups/stews in the morning in preparation for the large meal mid-day. The sharing of food can make it difficult to determine portion size, which complicates carbohydrate counting for insulin dosing.

The carbohydrates in rice and pasta were written on a piece of paper. We also eat a lot of traditional injera and chapati, and that has flour in it, and that is written on the label. But that is not how I cook, in small amount. So most of the time, we just have her eat salad and pasta, those kinds of things are very much similar in carbohydrates.

Improvement Opportunities. This theme was composed of five subthemes: appreciation for content, recognition of resources, interpretation, pace of information, and complex content. Caregivers were asked how diabetes training could be improved, and what would make the information easier to understand? Responses were complimentary of the teaching and appreciative of the diabetes management education. One consideration for improvement was expressed by many caregivers around the complexities of measurement and math calculations, which was a new concept for the families.

We were confused with the measurements. Especially using the syringe, and you know, drawing things up, and those kinds of things. It was hard to comprehend, but later on, we understood; it became easier.

Caregivers discussed their appreciation for interpreters being present during teaching but suggested the quality of information was not always consistent between interpreters.

They are trying to help; a lot of them were good, but sometimes, the interpreters do not know what is the information being talked about. The pace is fast and is hard to translate.

One caregiver spoke about the importance of a "Somali mouth" in teaching. When asked for clarification, the caregiver suggested the training would be much easier if the nurse spoke Somali so the teaching did not have to go from the teacher through the interpreter to the caregiver and "back again if there are questions; it makes it long and sometimes you do not ask questions."

Transition to Home Care

Clinical nurses caring for children newly diagnosed with diabetes shared concern that families from the East African communities struggled more with understanding concepts and often needed more than the three days of scheduled content. Nurses observed challenges with carbohydrate counting in food that did not resemble the child's home diet and calculations required to dose insulin. The consideration was not about the length of stay but about how families would manage at home. Questions about home routine and transitioning from hospital to home were included in the interviews.

Home Eating Patterns. This theme was composed of two subthemes: traditional foods and timing of meals. Caregivers expressed understanding that staff caring for them would not know how they ate at home but also found it confusing to learn carbohydrate counting in the hospital. In the hospital, meals are scheduled three times a day; one family found this difficult because at home, meals are less scheduled. There is "always food on the stove" and "we do not eat together." At home, parents have to think about "meals" in order to dose insulin.

They do not understand how we eat…they would not be able to understand because they are doctors, so they understood what they are teaching us but not how we live.
We do not eat food together…when I cook, they could go and come.

Food Measurement. This theme was composed of two subthemes: carbohydrate counting and measuring. One mother explained the hospital food was easy to measure, but this was not true at home. She described that it became easy to know what to do because the serving size and the amount of carbohydrates for each food item was written on the "tray ticket." Caregivers spoke of receiving a measuring cup and using this to measure pasta and rice to serve their child and calculate carbohydrates.

It was very hard because in my country, we don't measure the food… They gave us a cup, this is to measure food, then you know it is a cup to serve, and that is 45 carbohydrates.
Pasta and sauce you have to measure (asking herself) did I get it right or did I get it wrong?
The first time I was told to measure food…make sure you measure the food and then you have to make sure to measure the medicine, and then it just becomes overwhelming…but when you really look into it, it becomes easier.

Insulin Calculation. This theme was composed of one subtheme: numeracy. When families struggle with math they are given a "chart" that has been individualized specific to the child's insulin dosing requirements. When asked about insulin dosing knowledge, all caregivers described using the chart.

The chart tells me how much to give. It is written for the blood levels, the sugar, if the blood is high, I see how much to give her and same if it is low or normal, also how much to give her with food.
I used a chart before, but now I know by heart, by the top of my head, I know it.

Parent Confidence in Diabetes Management. This theme was composed of two subthemes: practice and timing. Initial fear and feeling overwhelmed were common across interviews. Many described going home feeling confused (not confident) but with time, practice, and understanding that the diabetes is real, they become more confident and could teach others in the family.

I never even heard of a child like this, getting diabetes…I know nothing about diabetes, and then later in my brain, I understood, and I become her teacher.
The first time was really hard for us to comprehend what would be given to her…but after you experience the diabetes and understand the material and all of that is being explained to you, then you get used to it. Now, today, I know what to do about it.

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