Medically complex children

Recently released research confirms what all too many parents already know: Access to home health nursing is often inadequate, and families face major financial burdens.

The study defines medically-complex children as those who are supported by tracheostomy and mechanical ventilation and require full-time skilled nursing care, but its findings will likely resonate with those caring for any medically complex child.

“This study is the first to focus on the in-home nursing and caregiving environment,” lead author Brian Jordan, MD, MCR, PhD, director of advanced mechanical ventilation and associate professor of pediatrics, Division of Neonatology, Oregon Health & Science University, says in a press release. “While prior studies have evaluated the home health nursing shortage from the point of view of the medical community, this study quantifies its impact as experienced and reported by medically-complex families themselves.”

Bullet Points

  • 87.8% of families reported having to make significant employment changes due to lack of in-home nursing.
  • 86.8% of families desired home health nursing and had home health nursing hours approved by their insurers, 47.5 percent reported fewer than half of approved hours were covered and 28.3 percent reported no in-home nursing at the time their child was discharged from the hospital.
  • 37.9 percent reported that their child’s hospital stay was extended due solely to lack of access to available in-home nursing.
  • Employment changes were not shared equally between parents, affecting 78.4% of mothers surveyed.

You can check out the report’s summary here.


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