Grant: Travel Awards - Institute Community Support

BACKGROUND: Osteogenesis imperfecta (OI) (also known as "brittle bone disease") is a rare disease that can lead to many debilitating bone fractures. Informal caregivers (such as parents) play a critical role in helping children with complex conditions like OI to live well in the community. Research has shown that caregivers of children with OI often lack access to information about the condition, feel distressed, and are socially isolated. Internet-based technologies (IBT) like search engines and social media have been useful for supporting caregivers in other populations. However, there is limited research on the uses of IBT by caregivers of children with chronic needs. PURPOSE: The purpose of this study was to explore the views of OI caregivers on the uses of IBT to support their child care work. Eighteen adult caregivers of children with OI were recruited at a children's hospital in Montreal, Canada. Individual interviews were used to explore each caregiver's perceptions of the uses of IBT in their OI caregiving work. RESULTS: Participants shared that IBT supported the following activities of daily caregiving: managing physical care, relational care, and self care; coordinating care; finding community resources; finding OI medical resources; and connecting with other OI families. However, caregivers also revealed concerns about the health consequences, accessibility, and quality of online content. Caregivers offered suggestions for how IBT can be optimized to support OI families. IBT should be built to be multilingual, regularly updated, easy to navigate, secure, and interactive. CONCLUSIONS: OI caregivers' ideas on the uses of IBT may prove beneficial to other OI caregivers, as well as to caregivers of children with other rare or chronic conditions. Clinicians should share the strategies that OI caregivers recommended with families newly diagnosed with OI. These caregivers' suggestions will contribute to the development of future supportive IBT products.