title: Brenna's story: A critical reflection and analysis of one mother's experience of navigating the medical system with a child with intellectual disabilities.
abstract: Children with intellectual disabilities spend more time in the health-care system than mainstream children. Parents have to learn how to navigate the system by coordinating appointments, understanding the referral process, knowing what services are available, and advocating for those services. This places an incredible amount of responsibility on families. This article is one mother's personal story and reflection about her journey through the Canadian health-care system in Nova Scotia, with her daughter who has an intellectual disability. The reflection identifies moments of tension experienced by a mother and how she was expected to be a medical system navigator, doctor-educator, time manager, and care coordinator and the roles that led to feelings of repression, extreme frustration, and fear. A final discussion offers an analysis of her experience, using concepts from feminist post-structuralism.
authors.affiliation: Dalhousie University, Canada bbcbye@gmail.com Megan.Aston@dal.ca.
authors.forename: Amanda
authors.initials: A
authors.lastname: Bye
authors.affiliation: Dalhousie University, Canada bbcbye@gmail.com Megan.Aston@dal.ca.
authors.forename: Megan
authors.initials: M
authors.lastname: Aston
mesh_terms: D000293:Adolescent; D003695:Delivery of Health Care / Q000592:standards*; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000628:therapy*; D009035:Mothers; D009674:Nova Scotia; D010817:Physician-Patient Relations
keywords: children in hospitals; critical reflection; intellectual disabililties; medical system navigation; patient–doctor relationships