Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study

Abstract

With the major advances in treatment of haemophilia in recent decades, people with haemophilia (PwH) are more protected in their daily lives than ever before. However, recent studies point to persisting or increasing patient experience of uncertainty.

Keywords

• mental models
• protection
• factor levels
• uncertainty
• haemophilia
• ethnography