Stress and coping of parents caring for a child with mitochondrial disease

Mitochondrial disease comprises a group of rare, genetic, life-limiting, neurodegenerative disorders known to affect children. Little is known about disease-related challenges, parental stress, and coping when caring for a child with a mitochondrial disease. Purpose: This study explored disease-related characteristics and parental stressors and coping behaviors related to caring for a child with mitochondrial disease. Methods: Internet surveys were posted on known mitochondrial disease websites for parent completion. Surveys included demographic items and two questionnaires: Coping Inventory for Parents (CHIP) and Pediatric Inventory for Parents (PIP). Descriptive data were collected and correlations used to determine relationships between parenting stress, coping, and demographic variables. Results: The majority of participants (n=231) were mothers (95%) of children with mitochondrial disease around the age of 10years (M=9.85). On average, children had 6 organs involved (M=6.02) and saw 7 different specialists (M=7.49); 61% were hospitalized in the past year. Significant correlations (p