Adolescent and Parent Perceptions of Long-Term Type 1 Diabetes Complications

Abstract

AIMS | Conversations about diabetes complications with adolescents and parents can be difficult and emotionally charged. To better inform conversations between providers and families, we sought adolescent and parent perspectives regarding their knowledge of long-term complications (LTCs), where they receive this information, and what they would like to learn from clinicians. METHODS | Adolescents with type 1 diabetes and parents of adolescents with type 1 diabetes participated in semi-structured interviews querying knowledge of LTCs, sources of information, and preferred ways for providers to discuss LTCs. Interview transcripts were coded and categorized into central themes by content analysis. RESULTS | Participants included 22 adolescents (17.4 6 1.7 years of age, diabetes duration 9.7 6 4.0 years) and 25 parents (41–60 years of age, 84% mothers). Five themes related to complications were identified: 1) “Limited Adolescent Knowledge of Complications,” 2) “Discussing Complications Is Important but Not Now or Not for Me,” 3) “Outside Sources Overestimate Risk,” 4) “Avoid Scare Tactics” and 5) “Emphasize Prevention.” Adolescent and parent perspectives were similar, although parents showed greater understanding of complications. CONCLUSION | When discussing complications, individualized, factual, positive, and prevention-focused conversations may be better received by adolescents with type 1 diabetes and their families.