title: Stress and coping of parents caring for a child with mitochondrial disease.
abstract: 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.
  
  
  OBJECTIVE
  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 10 years (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<0.05) were found between parenting stress and parent age, parent income, parent education, child age, child age at diagnosis, presence of developmental delays, number of hospitalizations, number of medical visits, number of organs involved, and number of specialists seen. Significant correlations were also found between parenting stress and coping behaviors such as family integration, social support and understanding health care.
  
  
  CONCLUSIONS
  The ability to identify disease-related challenges, stressors, and coping strategies in parents of children with mitochondrial disease is novel and can assist nurses to provide disease-sensitive, family-focused care and improve child health outcomes.
authors: Gonzaga University, Department of Nursing, Spokane, WA 99258-0038. Electronic address: sengerb@gonzaga.edu.
authors: Brenda A
authors: BA
authors: Senger
authors: Washington State University College of Nursing, Spokane, WA 99210-1495. Electronic address: linward@wsu.edu.
authors: Linda D
authors: LD
authors: Ward
authors: Washington State University College of Nursing, Spokane, WA 99210-1495. Electronic address: celestina@wsu.edu.
authors: Celestina
authors: C
authors: Barbosa-Leiker
authors: Washington State University College of Nursing, Spokane, WA 99210-1495. Electronic address: bindler@wsu.edu.
authors: Ruth C
authors: RC
authors: Bindler
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D013312:Stress, Physiological
keywords: Coping behavior; Genetic diseases; Mitochondrial diseases; Parents; Patient-centered care; Psychological stress