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"Unable to feed my hungry child": experiences of mothers caring for children with Prader-Willi Syndrome
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Funder (fnd): Library OA fund
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Abstract |
Abstract
Mothers’ experiences of caring for children with Prader-Willi Syndrome (PWS) is largely unknown. With no treatment for PWS, parents undertake (extra)ordinary care practices to keep children safe from overeating and self harm. Knowledge of these care practices could lead to effective interventions. Narrative inquiry was used to study everyday experience with Canadian mothers. Participants cared for a child 3 to 17 years old who had hyperphagia. Participants were interviewed 8 to 12 times each over the course of a year. Narrative accounts were co-composed through a collaborative process of analysis. Engaging with participants’ everyday experiences amplified complex care needs for families and gaps in health and social care systems. Narrative threads focused on engaging in (extra)ordinary care practices, rigid care work to keep children healthy and safe, tension from others while enacting these care practices, and difficulty conforming to social expectations with childrearing and care work. Recommendations for practice and policy include (a) shifting from untenable care practices, (b) reconceptualizing care work, and (c) alternative care models. |
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Volume 11
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PUBLISHED
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DOI |
DOI
10.1177/23333936241242929
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Use and Reproduction
This work is completed in its entirety by Genevieve Currie, Andrew Estefan, and Vera Caine. This work is licensed under an Attribution-NonCommercial 4.0 International (CC-BY-NC 4.0) license.
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Keywords
Prader-Willi syndrome
Rare disorders
Neurodevelopmental disorders
mothers
children
lived experience
medical complexity
narrative inquiry
Canada
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English
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"Unable to feed my hungry child": experiences of mothers caring for children with Prader-Willi Syndrome
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275590
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