Official websites use. Share sensitive information only on official, secure websites. Corresponding Author: Argerie Tsimicalis argerie. Osteogenesis imperfecta OI is a rare genetic condition that can lead to frequent debilitating bone fractures.
Family caregivers of children with OI face unique challenges in providing care, which may include limited access to information about the condition, feelings of distress, and experiences of social isolation.
Internet-based technologies IBTs have been useful for supporting other types of caregivers. A qualitative descriptive study was conducted. Caregivers of children with OI were recruited at a pediatric hospital in Montreal, Canada.
The interviews were transcribed verbatim and thematically analyzed. A total of 18 caregivers participated. The caregivers shared that IBTs were useful for facilitating the following activities: daily activities of caregiving such as providing physical care, supporting relationships, supporting self-care and hope, and managing the logistics of caregiving , OI medical information seeking, and OI social networking.
Caregivers offered suggestions and strategies for how IBTs can be optimized for caregiving. Family caregivers of children with OI face unique challenges in providing care, which may include lacking access to information about the rare condition and feeling socially isolated.
