Shortage of home healthcare for youth is draining families emotionally, financially

A shortage of trained pediatric home healthcare providers for children and youth with medical complexity creates challenges in meeting patients' medical needs and for families, according to an analytic policy piece published in Health Affairs.

The piece — by researchers at Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern University Feinberg School of Medicine — used national surveys and published hospital data to examine pediatric home care workforce challenges.

Researchers found that even when children and youth with medical complexity have Medicaid coverage that will pay for home nursing services, families face financial and access difficulties.

In these situations, "families [still] often have difficulty finding home nurses, which leads to either prolonged hospitalizations or exhausted family caregivers," the authors wrote, citing studies published in the American Academy of Pediatrics and the Journal of Pediatric Nursing.  

"Thus, the current home healthcare 'system' for children depends substantially on cost shifting to families, with vital but informal labor provided by family caregivers — typically mothers," they said.

The authors also cited a national survey of 1,406  U.S. caregivers who care for a child or adult with a rare disease or condition, which showed more than half of family members switched from working full-time to part-time or cut hours to provide needed care for their children.

"Although there are no formal metrics of quality for pediatric home health, it is evident from several national surveys that family caregivers are frequently shouldering enormous burdens that lead them away from their own gainful employment and create social, emotional and financial hardship," researchers concluded.

They recommended policymakers address some of these challenges through more competitive pediatric home healthcare workforce payment, improved training, better coordination of services among child-focused healthcare organizations and home health nursing services, and more broad use of telehealth.

Read the full piece here.  

 

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