Understanding information and education gaps among people with type 1 diabetes: a qualitative investigation.

Abstract

OBJECTIVE: Many patients with type 1 diabetes struggle to self-manage this chronic disease, often because they have a poor knowledge and understanding of the condition. However, little attention has been paid to examining the reasons for this poor knowledge/understanding. To inform future educational interventions, we explored patients' accounts of the education and information they had received since diagnosis, and the reasons behind gaps in their diabetes knowledge. METHODS: Semi-structured interviews were conducted with 30 type 1 diabetes patients enrolled on a structured education programme in the UK. Data were analysed using an inductive, thematic approach. RESULTS: Patients' accounts illustrated a number of knowledge deficits which were influenced by various lifecourse events. Reasons for deficits included: diagnosis at a young age and assumption of decision-making responsibility by parents; lack of engagement with information when feeling well; transitions in care; inconsistency in information provision; and, lack of awareness that knowledge was poor or incomplete. CONCLUSION: Patients' knowledge deficits can arise for different reasons, at different points in the lifecourse, and may change over time. PRACTICE IMPLICATIONS: The delivery of individualised education should take account of the origins of patients' knowledge gaps and be provided on a regular and on-going basis.