Parents' experience of coming to know the care of a chronically ill child

J Adv Nurs. 1994 Jun;19(6):1050-6. doi: 10.1111/j.1365-2648.1994.tb01187.x.


The family is the primary source of care for a chronically ill child, and it is the parents who must manage the child's illness on a daily basis. This qualitative study was undertaken to investigate the ways in which 10 two-parent families of children with juvenile arthritis experience their child's illness. In this paper the theme of coming to terms with the management of the illness and what it entails for the parents is examined. The data provide evidence of how the parents learn, and their efforts and experience of learning to care for the child on a daily basis. This is a complex process and includes the different phases the parents experience as they move through the learning process. The findings suggest that the parents learn the child's care and make adjustments to the demands of managing the child's illness in a way that works best for them.

MeSH terms

  • Adaptation, Psychological*
  • Adult
  • Arthritis, Juvenile / nursing*
  • Caregivers / education*
  • Caregivers / psychology*
  • Child
  • Home Nursing / psychology*
  • Humans
  • Internal-External Control
  • Learning
  • Nursing Methodology Research
  • Parents / education*
  • Parents / psychology*
  • Planning Techniques
  • Time Factors
  • Workload