The Parent Experience of Caring for a Child with Mitochondrial Disease

Mitochondrial disease is a spectrum of progressive genetic disorders resulting from dysfunctions of cellular metabolism in themitochondria that greatly compromise the lives of affected individuals, who are often children. Purpose: This study described the parent experiences unique to caring for a child with mitochondrial disease. Methods: Internet surveys were made available to parents of children with a known mitochondrial disease. Surveys included demographic items and two questionnaires: Parent Experience of Child Illness (PECI) and Pediatric Inventory for Parents (PIP). Descriptive data were collected and correlations calculated to determine relationships between the parent experience and stress. Results: The majority of participants (n = 231) were mothers (95%) of children with mitochondrial disease around the age of 10 years (M = 9.85). Elevated scores were found in parent adjustment illness-related concerns regarding Guilt and Worry (M = 2.30, SD = .650), Sorrow and Anger (M = 2.09, SD = .730), Long-term Uncertainty (M = 2.56, SD = .690), and Emotional Resources (M = 2.36, SD = .615). Scores indicated elevated feelings of stress in terms of both difficulty and frequency. Significant correlations (p < 0.01) were found between parent illness-related concerns and parenting stress. Conclusions: The results of this study suggest that parents of a child with mitochondrial disease feel a burden of responsibility that exceeds the typical caregiver role, see their child as fragile, and have concerns about their child's future. Identification of these concerns can assist nurses to better meet the needs of these parents and families. (C) 2016 Elsevier Inc. All rights reserved.