What Is It Like to Be a Child with Type 1 Diabetes Mellitus?
Valéria de Cássia Sparapani, Eufemia Jacob, and Lucila Castanheira Nascimento
Diabetes mellitus is a complex disease that requires significant changes in lifestyle upon diagnosis, which may be difficult for children because of differences in growth and developmental levels. The purpose of this study was to increase our understanding of "what it is like" to be a child with type 1 diabetes mellitus and explore factors that interfere with disease management. Qualitative interviews using puppets constructed by children 7 to 12 years of age were conducted during clinic visits. The interviewer engaged in conversations to examine thoughts, feelings, and daily experiences with the management of diabetes. Results indicated that the children (N = 19) expressed emotions and psychosocial factors that may interfere with their ability to manage diabetes. These included conflicting desires, insecurity, fear, pain, inadequate knowledge, worry about long-term effects, prejudice, rejection, and shame. Findings suggest that during patient teaching at the time of diagnoses and follow-up clinic visits, clinicians address not only the physical aspects of the disease (blood sugar monitoring, insulin administration, diet and exercise management) but also examine emotional and psychosocial needs, and discuss strategies that will promote positive coping as children live with the complexities of growing up with diabetes.