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The Parent Experience of Caring for a Child with Mitochondrial Disease

Brenda A Senger1, Linda D Ward2, Celestina Barbosa-Leiker2

  • 1Gonzaga University, Department of Nursing, Spokane, WA.

Journal of Pediatric Nursing
|October 11, 2015
PubMed

Insights

Caring for a child with mitochondrial disease causes significant parental stress and worry. Parents experience elevated concerns about guilt, sorrow, and long-term uncertainty, impacting their well-being.

Area of Science:

  • Genetics
  • Metabolic Disorders
  • Pediatric Illness

Background:

  • Mitochondrial disease encompasses genetic disorders affecting cellular metabolism.
  • These progressive conditions significantly impact children's quality of life.

Purpose of the Study:

  • To describe the unique experiences of parents caring for children with mitochondrial disease.
  • To identify parental concerns and stress levels associated with this condition.

Main Methods:

  • Internet surveys were administered to parents of children diagnosed with mitochondrial disease.
  • Validated questionnaires, including the Parent Experience of Child Illness (PECI) and Pediatric Inventory for Parents (PIP), were used.
  • Descriptive statistics and correlational analyses were performed to examine parent experiences and stress.

Main Results:

  • The study included 231 parents, predominantly mothers (95%), of children around 10 years old.
  • Parents reported elevated concerns regarding guilt, worry, sorrow, anger, and long-term uncertainty.
  • Significant correlations were found between parental illness-related concerns and increased parenting stress.

Conclusions:

  • Parents of children with mitochondrial disease often feel an overwhelming burden of responsibility.
  • They perceive their child as fragile and harbor significant concerns about the child's future.
  • Identifying these parental needs is crucial for healthcare providers, particularly nurses, to offer effective support.
Abstract

Keywords:
AngerGenetic diseasesGuiltMitochondrial diseasesParent experienceSorrowUncertaintyWorry

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