Laura Boone and Dr. Donna Freeborn, College of Nursing

The purpose of this qualitative study was to identify the stressors experienced throughout childhood and adolescence of adults with type 1 diabetes (T1D). Identification of stressors can be a helpful tool in improving the child and family’s quality of life and current treatment methodologies.

T1D is an autoimmune disease that destroys the insulin producing cells of the pancreas.Individuals with this disease have to administer insulin numerous times throughout the day in order to survive (Center for Disease Control, 2011). The age of presentation has a bimodal distribution peaking at ages 4‐6 and again at 10‐14 years of age (Hockenberry, 2011). This life altering disease requires constant vigilance of blood glucose levels and insulin ratios to prevent episodes of hyper or hypoglycemia. Long‐term complications of poorly managed diabetes include microvascular and macrovascular issues associated with the heart, eye, and kidney (Center for Disease Control, 2011). Early intervention and consistent lifelong treatment is crucial in prevention of the veritable complications. This project is important in helping to identify stressors experienced in childhood and adolescence from an adult perspective. Children with this disease experience various physical as well as emotional problems. The adult perspective of challenges they faced, and how they overcame certain issues can help to improve the child’s quality of life and increase understanding of effective or non‐effective treatments being used.

We started the project by interviewing adults with T1D recruited under IRB approval. After which the interviews were transcribed and common themes were identified throughout according to qualitative methods as proposed by Strauss (Strauss, 1987).

This study is still in the preliminary stages but so far 25 adults have been interviewed,and we continue to receive interest by many others. Common themes found throughout the interviews include: problems due to inadequate technology, keeping diagnosis a secret is better, specialists having unrealistic expectations, sense of uncertainty, and constant use of trial and error. Most of the participants were very empathetic with others, especially children who have been diagnosed. Many participants also found support groups and education to be very helpful.

Through these themes we realize that there are many similar challenges seen in adults, when they were diagnosed as a child or adolescent as many as 54 years ago, as there are in children who are diagnosed now. While there were similar themes between children recently diagnosed and adults with T1D, other themes were specific only to adults such as impact of stress on blood glucose levels, healthcare logistics, altered personal relationships, and impact of finances.

In conclusion we learned that adult’s perspectives were helpful, but with their perspectives we realized they had a different set of issues then as well as now. This group receives very little attention because research is mainly focused either on children with T1D or individuals with type II diabetes. While adults with T1D have often lived with the disease for a number of years, they have evolving and very different issues from the previously mentioned groups. More support should be given to this population in order to better understand and aid them in their needs. Data will be used in workshops for children Dr. Freeborn and our research team members are currently implementing.

Future research topics we discovered that would be advantageous to address include: further support for adults with T1D, the impact of pregnancy and childbirth on women with T1D, and difference in diagnosis before versus after adulthood. As we continue on with this project we intend to use our findings to go forward on different branches of research as before mentioned and to incorporate current findings into improving treatment methods for children with T1D. We anticipate that the findings from this research will be presented in a nursing research conference in the upcoming fall, and hopefully published soon after completion.

References

• Center for Disease Control and Prevention. (May 2011). Children and Diabetes—More Information. Retrieved from http://www.cdc.gov/obesity/index.html
• Hockenberry, M. Wilson, D. (2011). Wong’s nursing care of infants and children (9th Ed.) St. Louis, MO: Mosby Elsevier.
• Strauss, A. L. (1987). Qualitative analysis for social scientists. New York: Cambridge University Press.