Families with children with medical complexity and self-management of care: a systematic review of the literature

Soc Work Health Care. 2014;53(7):640-58. doi: 10.1080/00981389.2014.916776.


This review analyzes the quantitative literature on children with medical complexity (CMC). Using the Pediatric Self-Management Model, evidence is summarized into facilitators and barriers to self-management. Current quantitative research focuses on the caregiver burden in families with CMC. A model for social work with families with CMC was introduced in response to these findings. A re-envisioned model allows the child with medical complexity to be seen as whole rather than focusing on typically deficit-based areas of medical specialty or service provision.

Keywords: children with medical complexity; chronic illness; disability; medically fragile; self-management; social work; technology dependent.

Publication types

  • Review
  • Systematic Review

MeSH terms

  • Caregivers / psychology
  • Child
  • Child Care / psychology*
  • Cost of Illness
  • Disabled Children / psychology
  • Family / psychology*
  • Humans
  • Self Care / psychology*
  • Social Work