Nursing's contribution to research about parenting children with complex chronic conditions: an integrative review, 2002 to 2012

Nurs Outlook. 2013 Sep-Oct;61(5):266-90. doi: 10.1016/j.outlook.2013.03.008. Epub 2013 Jun 27.

Abstract

Children with complex chronic conditions (CCC) need extensive, costly care, usually provided at home by parents. These children often rely on technology to survive or avoid complications. Children with CCC receive nursing care in hospital, community, and home settings. An integrative review of 22 nursing studies, from 2002 to 2012, of parenting for children with CCC was conducted to synthesize nursing research addressing parenting a child with a CCC and identify promising areas for future inquiry and development of supportive interventions and policies. Criteria for sampling in these studies were reviewed, and an updated definition for children with CCC is offered to replace an outdated definition of "medically fragile" children. Findings include the extensive impacts of providing complex care at home, including the tension between the difficulties and recognition of the rewards of providing that care. Disruptions occurred in emotional, role development, social, and moral realms.

Keywords: Adolescent; Child; Children with special health care needs; Complex chronic conditions; Medically fragile; Parenting; Technology dependent.

Publication types

  • Review

MeSH terms

  • Child
  • Chronic Disease / therapy*
  • Health Services Research*
  • Humans
  • Nursing Research*
  • Parenting*