Calgary Parent 2 Parent Resource Network Meeting
Speaker: Genevieve Currie - MRU Nursing Faculty and mother of a child with a rare disease
Topic: The Parent's Experience of Caring for a Child with a Rare Disease: Digital Stories
As a mother and researcher, I decided to give voice to the parent’s experience of caring for a child with a rare disease. I designed a research study asking parents to tell me their experiences of caring for medical and social needs for their children. The parent stories have been largely silenced and not understood. They reveal the difficult and complex journey of families living with a rare disease and give voice to the untold stories of this very private and difficult journey.
Fifteen parents caring for children with rare neurodevelopmental diseases were asked to share their perceptions and experience of the medical and social supports that exist for their families within their local communities. Please join us as we share the parents' stores and experiences.