Parents of Children with Mitochondrial Disease: Disease Visibility, Depression, and Stigma

Abstract

Parents of children with special needs are often faced with a challenging parenthood. Previous research has demonstrated that parents of children with special needs such as autism, learning disabilities, complications due to premature births, etc. tend to experience an increase in depressive symptoms5. While extensive research has been conducted on parents of children with special needs in general, there is a lack of research on the population of parents of children with mitochondrial disease, a genetic disease caused from a failure of mitochondria in the body which supports cell life and growth. The present study tests the hypothesis that parents who report high disease visibility will also report high depression scores and parents who report high visibility will also report high perceived stigma scores. Fifty-seven parents of children with mitochondrial disease completed an online questionnaire about visibility, depression, and stigma, along with additional study variables. A positive correlation was found between depression and stigma scores. These results show that higher stigma scores indicate heightened depression scores. However, there was no correlation between visibility and depression or visibility and stigma. The lack of correlation between visibility and depression and visibility and stigma may indicate that a child’s disease visibility is not associated with the parent’s depression levels and perceived stigma.