Type 1 diabetes: children and adolescents' knowledge and questions

Title. Type 1 diabetes: children and adolescents' knowledge and questions. Aim. This paper is a report of a study conducted to describe what children and adolescents who have type 1 diabetes know and want to know about the disease. Background. Research indicates that young people's knowledge of diabetes may minimize their health complications, because with greater knowledge they may engage in more effective management practices and adherence. Methods. In this qualitative study, a purposive sample of 58 children and adolescents with type 1 diabetes were interviewed in 2005 about what they knew and wanted to know about their disease. Through a process of induction, major themes were identified from the data. Findings. The six major themes were: (a) Care, including both physical and emotional care, (b) Physiology, (c) Consequences, including both short- and long-term, as well as positive and negative consequences, (d) Cure, (e) Effects on the Family and (f) Experience at Diagnosis. Themes related to the unique challenges associated with type 1 diabetes were also identified. Conclusion. Nurses, diabetes educators and parents should provide developmentally appropriate information about diabetes care and management, scaffolding on existing knowledge. They should provide child-centred contexts in which children and adolescents can freely ask questions about their condition and problem-solve. Programmes that allow young people to develop coping skills and share experiences could also prove beneficial.