Online resource for parents of children with congenital hand differences
Tuberty, Sarah Katheryn
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Children with congenital hand differences (CHD) are at risk for social isolation, increased anxiety, and lower rates of self-esteem when compared to their typically developing peers (Lumsdaine et al, 2016). Parents may feel guilt, isolation, and may have perceived lack of resources to best support their children (Ardon, Janssen, Hovius, Stam, & Selles, 2012; Murray, Kelley-Soderholm, & Murray, 2007). Goffman (1963) explained that society perceives that individuals with differences belong to the “other” category deprived of social privileges which are standard to those in the “in-group”. Many children with congenital hand differences and their parents have limited access to the resources to manage and cope effectively with the negative assumptions about their ability.. This doctoral capstone project describes the development of an online resource for parents of children with congenital hand differences. The content for the webpage is based on literature, clinical and personal experiences. The online resource was designed to increase feelings of support, community, and effective coping for parents of children with CHD. Fourteen parents were recruited via social media platforms to review and evaluate the website. Responded evaluated the ease in website navigation, the usefulness of content, and rated their likelihood to use and to recommend the website. Parents on average found the website easy to navigate, useful, and were likely to use, and recommend the website.
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