Abstract and Introduction
Purpose: This project was initiated to evaluate clinical nurse concern that the diabetes education may not be meeting the needs of East African families. Clinical nurses noted the learning needs often exceeded the usual three days of training, and many questions remained at the time of discharge. The aim of the project was to explore the family's perceptions of the training they received and their ability to transfer the learning to home, and to use the information to improve education content.
Methods: East African immigrant families who had completed diabetes education in the previous two years were approached to participate in the project. Families were interviewed using standard, open-ended questions administered with the assistance of an interpreter. Interviews were transcribed, and content was reviewed for themes.
Results: Seven families native to an East African community agreed to be interviewed. Children were aged 3 to 16 years and had been diagnosed with type 1 diabetes mellitus over the previous two-year period. From the transcripts, eight main themes and 21 subthemes emerged. Themes included parental fear of the diagnosis of diabetes, feeling overwhelmed by the information being presented to them, and difficulty in following the concepts of carbohydrate counting and food measurement. Parents were pleased with the availability of interpreters present for class sessions, but a few felt the interpretation of the content varied between interpreters. Transition to home was challenging for many families.
Conclusion: The project involved a small population of families who provided valuable information about their perceptions of learning to manage their child's diabetes while in the hospital and the challenges experienced translating the information to their home setting. The information acquired from the interviews will be applied to diabetes education programming, starting with improving understanding of what information is most valuable at the time of initial diagnosis.
In 2018, in the United States, 187,000 children and adolescents younger than 20 years were diagnosed with type 1 diabetes mellitus (Centers for Disease Control and Prevention, 2020). Diabetes is an increasing epidemic in all age groups at a cost of $174 billion per year (Ye et al., 2017). Diabetes in the Somali immigrant population living in the United States is higher, with worse outcomes than the general population, further increasing health disparities (Njeru et al., 2016). Health disparities are the differences in health outcomes between population groups, most commonly due to ethnicity/race, disadvantages in socioeconomic status, and education (Mantwill et al., 2015). Health disparities are often linked to low health literacy, which refers to the capacity to navigate the health care system, understand instructions, ask questions, and communicate concerns.
It is important to appreciate how low health literacy (LHL) may negatively impact patients' and families' understanding of how to manage their health care needs. Factors that increase risk of low health literacy include level of education, language, socioeconomic status, ethnicity, and immigration status. These difficulties present challenges to understanding medication doses, medical regimens, and other chronic disease management skills, leading to poor health outcomes and increased health disparities (Osborn et al., 2010). The health literacy of a caregiver may also have an impact on a child's health. One in 10 children have health care needs that may include chronic medications, blood glucose monitoring, care of a tracheostomy, or a gastrostomy tube (Sanders et al., 2009). A caregiver with LHL, whose child has chronic health care needs, may find it difficult to navigate the pediatric health care system, understand medication administration instructions, struggle providing complex medical regimens, and find it difficult to communicate with health care providers (Rothman et al., 2009). A study evaluating health outcomes in children with asthma found that parents with LHL had less asthma knowledge, which resulted in their child experiencing more hospitalizations and a higher rate of adverse asthma outcomes (DeWalt et al., 2007). Caring for a child with a chronic health condition is challenging, but the complexities of care are intensified when the caregiver has LHL. Patient education materials often need to be translated for the caregiver, which may alter some of the intent of the material and lead to further confusion. The inability to understand and act on tasks described in education materials may ultimately impact the child's health outcomes.
In the pediatric patient, diabetes teaching includes reading nutrition labels, calculating carbohydrates in foods, and calculating insulin dose based on blood glucose results and carbohydrates to be eaten. If the parent has limited English proficiency (LEP), the same teaching is accomplished using an interpreter during verbal instruction with a diabetes educator and return demonstration of skills with the clinical nurse caring for the patient. How families with LHL perceive this education and how this information is transitioned from the hospital environment to home may provide insight to opportunities to improve education for pediatric patients and their families.
Few studies describe perceptions of diabetes management education in the East African family. In one study, 18 Somali-speaking adults who had been diagnosed with diabetes for a minimum of 6 months were interviewed to learn about their everyday living and management of diabetes. Findings included the need to consider culture, religious traditions (e.g., fasting), traditional foods, and the feeling of loss of freedom due to the diagnosis of diabetes. This study asked about living with diabetes but did not inquire about perceptions of diabetes management education (Wallin et al., 2007). In another study, 25 East African families of children diagnosed with diabetes were surveyed to better understand cultural beliefs and perception of their child's disease. Findings included an overall positive attitude about living with diabetes, although parents expressed concern about diabetes complications in their child's future. Families discussed appreciation for the diabetes education but reported difficulties with carbohydrate counting, glucose level, and insulin dosing (Sunni et al., 2015). This study surveyed families about living with diabetes with the goal of improving diabetes control, not perceptions of actual diabetes management education that might highlight areas for improvement in the initial training of patients and families.
Our pediatric academic medical center follows approximately 2,000 children with diabetes, averaging 207 newly diagnosed patients annually. Across the medical center, 13% of families list languages other than English as their preferred language for care. Out of the 13% of families who do not speak English, 5% speak Somali. Caregivers of the child with diabetes need to understand principles of nutrition, read nutrition labels to determine the carbohydrate content of foods, and calculate insulin dosing based on carbohydrates eaten and to correct blood glucose to meet the prescribed target. These skills are especially challenging for caregivers with LHL. Diabetes management education occurs over three days during the diagnosis hospitalization. Carbohydrate counting and insulin dose calculation is demonstrated using meals provided by the hospital. Clinical nurses expressed concern that diabetes education was not meeting the needs of the East African families who often required longer than the standard three days of training. Nurses felt families were struggling with insulin dose calculations, food measurement, and carbohydrate counting using hospital food that seemed unlikely to transfer to traditional foods eaten at home. These subjective reports of increased hospital days and concern for appropriate teaching content prompted a desire to evaluate caregiver perceptions of diabetes education and address the needs of the East African Family.
To better understand perceptions, it was felt interviewing the caregivers would yield the most useful information. Interviews provide details about an experience or concern, and are a useful method to explore experiences of care. Using data from this qualitative method through the analysis of interview text is important in improving the understanding of the point of view of individuals involved and to hear what really matters to patients and their families (Pope et al., 2002).
The aim of this project was to answer the following questions in relation to East African parents caring for their child recently diagnosed with type I diabetes:
What is the perception of diabetes education?
What is the parental report of ability to transfer hospital learning to home?
What components of the diabetes management education do caregivers find helpful?
What components of the diabetes management education do caregivers find to be a challenge to learn?
Pediatr Nurs. 2020;46(3):146-151. © 2020 Jannetti Publications, Inc.