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Caregiver Perspectives On The Daily Function Of People Living With Hnrnph2-Related Neurodevelopmental Disorder: Developing A Conceptual Model, Rachel Salazar
Caregiver Perspectives On The Daily Function Of People Living With Hnrnph2-Related Neurodevelopmental Disorder: Developing A Conceptual Model, Rachel Salazar
Seton Hall University Dissertations and Theses (ETDs)
Introduction: Neurodevelopmental disorders are a group of conditions that start in childhood and lead to impairments in functioning. HNRNPH2-related neurodevelopmental disorder is an ultra-rare disorder in which individuals present with cognitive, behavioral, language and motor function impairments that often leads to reliance on their caregivers. Existing conceptual models of neurodevelopment are not specific to this ultra rare disorder and do not highlight the caregiver impact of living with HNRNPH2-related neurodevelopmental disorder.
Purpose: The purpose of this study is to understand the caregiver perspective on the everyday functioning of people living with HNRNPH2-related neurodevelopmental disorder to generate a …