Family experience with osteogenesis imperfecta type 1: the most distressing situations

Abstract

Our results reinforce the assumption that OI is a family matter and point to the importance of providing comprehensive and family-centered health and educational services tailored to each family member and to the different situations faced by these families. Implications for rehabilitation Osteogenesis imperfecta is a chronic rare disease that impacts severely the patient's life and the life of all family members. The most distressing situations are related to fractures and pain, hospitalization, recovery from fractures while being at home and preparing for school reentry. All family members participate in the rehabilitation process, each one accomplishing different tasks. Rehabilitation should include educational and psychological intervention to enhance family strengths and support all family members. Tailored and effective communication from health providers may play a critical role in the rehabilitation process.