Listening to adolescents with uncontrolled diabetes, their parents and medical team

Abstract

Introduction: Few studies have reviewed concurrent perspectives and experiences of parents, health care providers (HCPs), and adolescents themselves, when their Type 1 diabetes (T1D) is uncontrolled. We utilized a qualitative interview approach to explore these feelings and interactions. Method: Nine adolescents, age 13-18 years with T1D > 1 year and A1C > 9.0%, their parents, and 10 HCPs participated in semistructured interviews. The 7 girls and 2 boys were interviewed with their parents present and the 10 HCPs participated in separate interviews. Interviews were recorded, transcribed, and reviewed for themes relevant to the uncontrolled diabetes experience. Results: Adolescents, parents, and providers shared similar feelings of frustration, guilt, anxiety, and anger related to uncontrolled diabetes, but described very different behavioral responses to these unexpressed feelings. Adolescents tended to rebel and became more nonadherent to diabetes-related tasks. Parents became angry, nagged, threatened, and often blamed and shamed their teen. Health care providers became less patient-focused, distancing themselves from patients and their parents. This resulted in misunderstandings, conflict, and often disengagement from diabetes. Discussion: Adolescents with poorly controlled T1D, their parents, and HCPs, while attempting to do their best, often respond to their frustrations with visible behaviors "out of sync" with their unexpressed feelings. This resulted in conflict, continued poor blood sugars, and disengagement. Interventions to improve diabetes-related care and communication between adolescents, parents, and HCPs may result in improved diabetes self-management.