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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.

Objective: This research explores the parent experience, disease-related challenges, coping strategies, and pediatric illness-related stress in parents of children with mito.

Methods: Internet sampling of 231 parents of children with mito included demographic information and three questionnaires: Parent Experience of Childhood Illness (PECI), Coping Inventory for Parents (CHIP) and Pediatric Inventory for Parents (PIP).

Results: Correlation analysis found significant relationships (ρ ≤ 0.01, ρ ≤ 0.05) in illness-related parenting stress associated with parent age, parent income, parent education, child age, child age at diagnosis, presence of developmental delays, frequency of hospitalizations and medical visits in the past year, number or organs involved, and number of specialists seen. Regression analysis found ten significant overall models (ρ ≤ 0.01, ρ ≤ 0.05), with the following significant predictors of pediatric-illness related stress: frequency of hospitalization over past year, parent income, number of medical visits per year, guilt & worry, emotional resources, sorrow & anger, long-term uncertainty, and understanding health care.

Conclusions: The ability to identify disease-related challenges, coping strategies, and parent experiences in assessing psychosocial stressors in parents of children with mitochondrial disease can assist health care professionals to provide disease-sensitive, family-focused care.



Washington State University

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childhood illness, coping, mitochondrial disease, parent experience, parents, stress



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