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Parenting and Childhood Chronicity: making visible the invisible work

Lynne D Ray1

  • 1Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada. Lynne.Ray@ualberta.ca

Journal of Pediatric Nursing
|January 9, 2003
PubMed

Insights

Raising a child with chronic illness requires extra effort, involving medical care and system navigation. Parents also strive to minimize consequences on family life and personal well-being.

Area of Science:

  • Pediatrics
  • Child Development
  • Family Studies

Background:

  • Parenting a child with a chronic illness or disability presents unique challenges.
  • The demands exceed those of raising typically developing children, impacting family dynamics and parental well-being.

Purpose of the Study:

  • To present the Parenting and Childhood Chronicity (PACC) model.
  • To describe the multifaceted nature of parenting children with chronic conditions.

Main Methods:

  • An interpretive study was conducted.
  • Data were collected from 43 parents of 34 children (aged 15 months to 16 years) with diverse chronic conditions.

Main Results:

  • The PACC model identifies two core components: "Special needs parenting" and "Minimizing consequences."
  • "Special needs parenting" encompasses medical care, "parenting plus," and navigating systems.
  • "Minimizing consequences" involves balancing family life, including sibling care, relationships, and self-care.

Conclusions:

  • The PACC model provides a framework for understanding the complexities of parenting children with chronic conditions.
  • Recognizing these demands is crucial for supporting affected families.

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