Academic journal article International Journal of Child Health and Human Development

The Role of Developmental Psychology in the Lives of Individuals with Severe and Profound Intellectual Disability

Academic journal article International Journal of Child Health and Human Development

The Role of Developmental Psychology in the Lives of Individuals with Severe and Profound Intellectual Disability

Article excerpt

People with significant intellectual disabilities often have a variety of accompanying chronic medical challenges. These challenges often then become the focus of both the professionals working with this population as well as the scientific community conducting research into these conditions.

This leaves a large component of the lives of people with significant disabilities less focused upon, namely, their daily lives and the quality of those lives. Furthermore, this purely medical focus in the scientific literature seems somewhat at odds with the expressed concerns of many families simply trying to get through the day. For example, a recent comparison (Glicksman, et al, 2012) of published research related to one such condition (Canavan Disease) found the published research to be exclusively focused on three areas: biochemistry, diagnosis and genetic counseling, and clinical therapeutic approaches.

Concurrently, a review of family initiated topics discussed on a popular Canavan Disease Internet discussion board found that only 17% of family initiated topics focused on these areas while the remaining 83% of family concerns addressed the practical, day to day lives of their children and adolescents with this condition. …

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