Unable To Feed My Hungry Child: A Narrative Inquiry into the Experience of Caring for a Child with Prader Willi Syndrome
Date
2022-12-22
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Abstract
Prader-Willi syndrome is a genetic disorder that causes insatiable hunger and overeating. It poses both significant health risks and complex social challenges for families. The experiences of mothers caring for a child with Prader Willi syndrome and managing the hyperphagia and anxiety are not well known. Researchers have studied the biological make up of Prader Willi syndrome but few have explored mothers’ experiences in managing the physical and mental health issues of caring for a child with hyperphagia, anxiety, and insatiation. This study is a narrative inquiry into the experiences of four mothers caring for their children with Prader Willi syndrome. Narrative inquiry is the study of experience using storied accounts and attends to the dimensions of temporality, place, and sociality. Four narrative accounts were co-composed with participants and highlight the complex political and social landscapes for families. The narrative accounts revealed two narrative threads, engaging in (extra)ordinary care practices, and navigating tensions called forth by coherent and incoherent stories. Recommendations for practice, policy, and theory are also presented after inquiring into mothers’ experiences.
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Keywords
neurodevelopmental disorder, Prader Willi syndrome, disability, narrative inquiry, mother's experience, children, hunger
Citation
Currie, M. G. (2023). Unable To Feed My Hungry Child: A Narrative Inquiry into the Experience of Caring for a Child with Prader Willi Syndrome (Doctoral thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.