The role of significant others in adolescent diabetes: a qualitative study

Abstract

Purpose: The purpose of this study was to explore perceptions of how diabetes influences adolescents' perceptions of quality of life in general and their relationships with parents, peers, school, and their physician.

Methods: The authors recruited adolescents between the ages of 13 and 18 years living with type 1 diabetes mellitus from a midwestern metropolitan area. Qualitative analysis of the focus group data followed a set procedure: (1) audio review of the tapes, (2) reading through the transcriptions, (3) discussions among investigators, (4) determination of conceptual themes, and (5) assignment of relevant responses to appropriate thematic constructs.

Results: The 5 focus groups involved 31 adolescents. From the discussions that occurred within the 5 focus groups, the following themes were identified: personal perceptions of living with diabetes (which included living with diabetes, testing and injections, and blood sugar fluctuations), impact on relationships (which included relationships with their parents, their friends/peers, and their physician), and impact on school.

Conclusions: Diabetes in adolescence is fraught with equal and opposite demands. One consequence of this internal push/pull is that adolescents become more afraid to do appropriate developmental activities. This can have a significant impact on their normal progression to independence and adulthood, ironically at odds with the increased responsibility they have had to assume throughout their lives to care for their disease. Much of the clinical time and research still focuses on the devices of diabetes care: testing and treatment. While these are important tools in improving the outcomes of people with diabetes, they will have little impact on the adolescent until the developmental consequences of diabetes on their lives are simultaneously addressed.