Understanding the Psychosocial Effects of WES Test Results on Parents of Children with Rare Diseases

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Factors associated with parental adaptation to children with an undiagnosed medical condition

Little is known about the adaptive process and experiences of parents raising a child with an undiagnosed medical condition. The present study aims to assess how uncertainty, hope, social support, and coping efficacy contributes to adaptation among parents of children with an undiagnosed medical condition. Sixty-two parents of child affected by an undiagnosed medical condition for at least two years completed an electronically self-administered survey. Descriptive analysis suggested parents in this population had significantly lower adaptation scores when compared to other parents of children with undiagnosed medical conditions, and parents of children with a diagnosed intellectual and/or physical disability. Similarly, parents in this population had significantly lower hope, perceived social support and coping efficacy when compared to parents of children with a diagnosed medical condition. Multiple linear regression was used to identify relationships between independent variables and domains of adaptation. Positive stress response was negatively associated with emotional support (B\ua0=\ua0−0.045, p\ua0≤\ua00.05), and positively associated with coping efficacy (B\ua0=\ua00.009, p\ua0≤\ua00.05). Adaptive self-esteem was negatively associated with uncertainty towards one’s social support (B\ua0=\ua0−0.248, p\ua0≤\ua00.05), and positively associated with coping efficacy (B\ua0=\ua00.007, p\ua0≤\ua00.05). Adaptive social integration was negatively associated with uncertainty towards one’s social support (B-0.273, p\ua0≤\ua00.05), and positively associated with uncertainty towards child’s health (B\ua0=\ua00.323, p\ua0≤\ua00.001), and affectionate support (B\ua0=\ua00.110, p\ua0≤\ua00.001). Finally, adaptive spiritual wellbeing was negatively associated with uncertainty towards one’s family (B\ua0=\ua0−0.221, p\ua0≤\ua00.05). Findings from this study have highlighted the areas where parents believed additional support was required, and provided insight into factors that contribute to parental adaptation