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- Contributor(s)
- Genevieve Currie; Joanna Szabo
- Date issued
- 2020
- Description
- ABSTRACT Purpose: The experiences of parents caring for the complex care needs of children with rare neurodevelopmental disorders are not well understood. Parents struggle to meet their children’s medical, behavioural, and social needs within and across health, social, and family systems. The purpose of this study was to explore the parents’ experience of caring for medical and social care needs for children with rare neurodevelopmental disorders. Methods: Hermeneutic phenomenology was used for the data analysis. Fifteen parents participated in semi-structured interviews. Results: Interpretive analysis revealed four insights: (a) difference in children’s behaviours and disease...
- Type
- article
- Appears in collection(s)
- Health, Community and Education
- 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