What Is It Like to Be a Child With Type 1 Diabetes Mellitus?

Valéria de Cássia Sparapani, MSc, RN; Eufemia Jacob, PhD, RN; Lucila Castanheira Nascimento, PhD, RN

Disclosures

Pediatr Nurs. 2015;41(1):17-22. 

In This Article

Abstract and Introduction

Abstract

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.

Introduction

Type 1 diabetes mellitus (T1DM) is a common chronic disease in children and adolescents, and its incidence is approximately two-thirds of all diabetes cases diagnosed in children (Haller, Atkinson, & Schatz, 2005; Karvonen et al., 2000). Diabetes affects children's quality of life, psychological wellbeing, and sense of control (Morris, Johnson, Gunnery, Gayle, & Meek, 2006). Suc cessful diabetes management involves not only self-care, but also understanding the impact diabetes has on the child, his or her activities of daily living, and eventually, their acceptance of the disease (Morris et al., 2006). By investigating children's own experiences of living with diabetes, nurses may promote successful disease management and build educational and psychosocial programs that best support the needs of children with T1DM and their families. The purpose of this study was to increase our understanding of "what it is like" to be a child with T1DM from the younger child's perspective and explore factors that interfere with disease management.

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