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‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases
Contributor(s)
Genevieve Currie; Joanna Szabo
Date issued
2019
Description
Background: Parent experiences of caring for children with neurodevelopmental disease have been silenced and constrained by social, political and health influences. There is a need to co‐construct new meanings and interpretations of parenting a child with complex disabilities by having an increased understanding of the struggles and barriers for parents. Methods: A hermeneutic phenomenology approach was applied in this inquiry. Fifteen parents of children with rare neurodevelopmental diseases participated in semi‐structured interviews. Results: Parents experienced silencing or being silenced within interactions with health‐care and social care systems and providers. Interpretive thematic...
Type
article
Appears in collection(s)
Health, Community and Education