Identifying challenges of living with type 1 diabetes: child and youth perspectives

AIMS AND OBJECTIVES: To identify challenges children and youth with type 1 diabetes encounter from their own perspectives. BACKGROUND: Type 1 diabetes requires lifestyle changes involving diet modification, monitoring blood glucose, counting carbohydrates and administering insulin. Learning self-care and developing positive attitudes can improve glucose management and promote long-term benefits. Therefore, understanding challenges of youth living with type 1 diabetes from their own perspective is an important first step in improving diabetes outcomes for this age group. DESIGN: Qualitative descriptive design using focus groups to identify the experiences and challenges of children and youth living with type 1 diabetes. METHODS: Six focus groups were held over a four-month period in 2010; each participant attended one focus group. A total of 16 children and youth with type 1 diabetes participated. The focus group discussions were audio recorded, transcribed verbatim and analysed for common themes according to qualitative methodology. To assure trustworthiness, investigators independently coded interviews and themes were refined and adjusted until consensus was reached. RESULTS: Three themes emerged after analysing transcripts from the focus groups that embody challenges children and youth with type 1 diabetes faced: (1) low blood glucose; (2) self-care activities; and (3) feeling different and/or alone. CONCLUSIONS: Data indicated type 1 diabetes is challenging for this age group. These challenges must be addressed to assist youth in learning to manage their disease and promote healthy outcomes. RELEVANCE TO CLINICAL PRACTICE: It is important for nurses to discuss challenges, understand perspectives of this age group, listen to their concerns, work with them to develop strategies promoting health, minimise complications, reduce or eliminate feeling different or alone and assist parents' efforts to be supportive.