Lived Experience of Pediatric Home Health Care Among Families of Children With Medical Complexity

Renee D. Boss, Jessica C. Raisanen, Kathryn Detwiler, Karen Fratantoni, Susan M. Huff, Kathryn Neubauer, Pamela K. Donohue

Research output: Contribution to journalArticlepeer-review

3 Scopus citations


Background. For children with complex medical conditions, pediatric home health care is a chronic need. It is a clinical service delivered entirely outside of clinical settings, granting families unparalleled expertise regarding service quality. Methods. Telephone interviews with parents whose children have extensive experiences with home health care. Results: Five themes emerged: (1) benefits of home health care include child survival and family stability; (2) family life is inextricable from home health care schedules, staffing, and services; (3) home health care gaps threaten family physical, mental, and financial well-being; (4) Out-of-pocket costs are common; and (5) families must fight for services as their children’s medical conditions evolve. Conclusions. Families understand better than prescribers, providers, or policy makers what is working, and what is not, with home health care. Family expertise should be the foundation for training other families, clinicians, and home health care agencies, and should be a central component of policy and advocacy in this area.

Original languageEnglish (US)
Pages (from-to)178-187
Number of pages10
JournalClinical pediatrics
Issue number2
StatePublished - Feb 1 2020


  • Medical complexity
  • family experience
  • home health care

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health


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