Identifying Disease Characteristics, Parent Experience, and Coping Strategies When Predicting Pediatric Illness-Related Stress in Parents of Children with Mitochondrial Disease

Abstract

Mitochondrial disease (mito) is a group of rare, inherited, chronic, life-limiting, incurable neurodegenerative disorders known to affect children early in life that result from failure of the mitochondria to turn food into energy. The diagnosis of mito is elusive and complex, with a variety of clinical manifestations, multisystem involvement and the lack of a reliable biological marker for screening and diagnosis. The unpredictable prognosis and erratic nature of this illness can be overwhelming to parents who bear the daily responsibilities of managing the child's care. Little is known about the experience of parents caring for a child with mito.