Parenting and Childhood Chronicity: making visible the invisible work

J Pediatr Nurs. 2002 Dec;17(6):424-38. doi: 10.1053/jpdn.2002.127172.


The work required to raise a child with a chronic illness or disability is above and beyond that of raising a typical child. This article presents a model, Parenting and Childhood Chronicity (PACC), that was developed during an interpretive study with 43 parents of 34 children (aged 15 months to 16 years) with various chronic conditions, is presented. "Special needs parenting" describes the additional care that a child needs and includes medical care, parenting plus, and working the systems. "Minimizing consequences" reflects the struggle to balance the rest of family life and includes parenting siblings, maintaining relationships, and keeping yourself going.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adaptation, Psychological
  • Adolescent
  • Child
  • Child Rearing
  • Child Welfare
  • Child, Preschool
  • Chronic Disease
  • Cross-Sectional Studies
  • Developmental Disabilities / epidemiology
  • Developmental Disabilities / nursing*
  • Female
  • Health Education / organization & administration
  • Humans
  • Infant
  • Male
  • Nurse's Role
  • Parent-Child Relations*
  • Parenting*
  • Pediatric Nursing / standards*
  • Pediatric Nursing / trends
  • Quality of Life*
  • Sensitivity and Specificity
  • Social Support
  • Stress, Psychological