Concordance and discordance between youth and their parents' reports of diabetes distress: The importance of youth perceptions

Abstract

Aims: The purpose of this study was to examine concordance and discordance between youth and parent reports of diabetes distress (DD) and their impact on glycemic control, diabetes-specific family conflict, and diabetes task responsibility.

Methods: Youth with type 1 diabetes ages 8-17 years (N = 120, 49% female) and their parents (84% mothers) completed surveys assessing DD, diabetes-specific family conflict, and family responsibility for diabetes tasks. Participants who scored below validated cut-points for DD were categorized as having low DD and above cut-points as elevated DD. Then youth/parent dyads were categorized as concordant when youth and parents both reported low DD or both reported elevated DD and discordant when one reported low DD and one reported elevated DD.

Results: About a quarter (26% of youth, 23% of parents) reported elevated DD; 10% of youth/parent dyads were concordant for elevated DD. However, many dyads (28%) reported discordantly (12.5% Youth Low/Parent Elevated, 16% Youth Elevated/Parent Low). A1c (p = .04) and youth-reported diabetes-specific family conflict (p = .04) were significantly higher in the Youth Elevated/Parent Low group than in the Youth Low/Parent Elevated group.

Conclusions: DD can be experienced differently among youth and their parents. When this experience is discordant, youth perceptions may be important to consider.

Keywords: Conflict; Diabetes distress; Responsibility; Type 1 diabetes; Youth.