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Conroy, Paula

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Optic nerve hypoplasia (ONH) is a leading cause of childhood visual impairment. Children with ONH are at significantly increased risk for a number of concomitant neurological and behavioral problems. This study applied phenomenological qualitative research methods to investigate the experiences that parents of children with ONH have with raising their child. Twelve parents of children with ONH were interviewed. Three major categories emerged from the data: (a) resiliency of parents who have children with ONH; (b) strategies that families of children with ONH use; and (c) connections that support families of children with ONH. The categories and associated themes are discussed as well as implications for future research efforts and recommendations for practitioners. The findings of this study indicate that parents value child-centered planning and creative problem solving to meet their children’s needs. Furthermore, children with ONH need routines, consistency, and structure to support their development.


148 pages

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