Abstract
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 manifestations led to misunderstanding and vulnerability within social domains, (b) social taboo and stigma were experienced with rarity, (c) fragmented disconnected care from health and social systems impacted families, and (d) incomprehension from friends and family occurs when managing daily care. Conclusion: New interpretations and increased understanding of parents’ experiences are required in supporting parents caring for children with complex needs. Understanding parents’ experiences could reduce social isolation and exclusion, and mitigate appropriate and supportive practices and services within and across medical, social, and family systems.
Highlights
Parents’ experiences of caring for the medical, behavioural, and social needs for children with rare neurodevelopmental disorders (NDDs) are largely misunderstood and unknown
Parents were asked to share their experience of caring for children with rare NDDs surrounding medical and social supports
New and diverse layers emerged in the parent narratives regarding involvement with social, medical, and family systems because of complex disease and behavioural issues
Summary
Parents’ experiences of caring for the medical, behavioural, and social needs for children with rare neurodevelopmental disorders (NDDs) are largely misunderstood and unknown. Children often experience complex physical and behavioural challenges, compounded by rarity of disorders and lack of knowledge about the disease They require multisystem involvement and integrated care for managing the disorders in the community. Narratives of parents largely remain unvoiced because of fear of social misinterpretation, shame, and misunderstanding (Carpenter & Austin, 2007) These realities contribute to the untold stories of parents who care for children with complex disorders. Parents were asked to share their experience of caring for children with rare NDDs surrounding medical and social supports. Parents disclosed their experience of isolation and exclusion within medical, social, and family systems
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