Brenda A Senger1, Linda D Ward2, Celestina Barbosa-Leiker3, Ruth C Bindler4. 1. Gonzaga University, Department of Nursing, Spokane, WA 99258-0038. Electronic address: sengerb@gonzaga.edu. 2. Washington State University College of Nursing, Spokane, WA 99210-1495. Electronic address: linward@wsu.edu. 3. Washington State University College of Nursing, Spokane, WA 99210-1495. Electronic address: celestina@wsu.edu. 4. Washington State University College of Nursing, Spokane, WA 99210-1495. Electronic address: bindler@wsu.edu.
Abstract
UNLABELLED: 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 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.
UNLABELLED: 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 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: Kim F E van de Loo; José A E Custers; Saskia Koene; Inge-Lot Klein; Mirian C H Janssen; Jan A M Smeitink; Christianne M Verhaak Journal: Orphanet J Rare Dis Date: 2020-03-24 Impact factor: 4.123