Effects of Perceived Stigma Amongst Parents of Children with Mitochondrial Disease

Abstract

Mitochondrial disease (mito) is a rare and often debilitating illness that affects children and adults. This disease is caused by a failure in the mitochondria, in which they no longer are able to produce the energy needed for cells to survive38. Mito is a progressive and life limiting disease that severely affects children. There have been numerous studies that have examined the effect of perceived stigma on parents who have a child with a mental illness11, 23. According to Goffman18 stigma is the way society views those who have a mental illness, usually in a negative way. Since mito is not classified as a mental illness, we were interested in seeing if perceived stigma exists with a disease whose physical manifestations could possibly produce these feelings of perceived stigma. The current study will examine parents of children with mito. It is hypothesized that parents will perceive stigma is attached to them, even with a disease that not many people know about, which will lead to an increase in stress and an increase in depression. Also, it is hypothesized that the more stigma a parent perceives they have, the more likely they will use social comparison when to comes comparing their child to someone else’s child. A survey was administered on an online support group for parents of children with mito, Parent2Parent. Fifty-eight parents, mean age 34, all of whom have at least one child with mito (or a similar metabolic disease) participated in the survey. A significant positive correlation was found between perceived stigma and depression and between perceived stigma and stress. There was also a significant positive correlation between perceived stigma and social comparison. These results show that parents perceive they are negatively stigmatized and this stigmatization leads to an increase in stress and depression. Parents who perceive stigma also will use social comparison more. It is hoped that this study will help spread awareness of mito and also help those whose lives are affected by mito face the everyday issues they encounter.