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.