Limited access to in-home nursing for medically complex children leads to familial burdens
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Key takeaways:
- 37.9% of families surveyed had their child’s hospital stays extended solely due to lack of in-home nursing.
- Mothers were disproportionately responsible for employment changes due to lack of in-home nursing.
SAN DIEGO — Home health nursing for medically complex children appeared difficult to obtain and costly, placing significant burdens on families, according to an abstract presented at the American Thoracic Society International Conference.
“This study is the first to focus on the in-home nursing and caregiving environment,” study author Brian Jordan, MD, MCR, PhD, director of advanced mechanical ventilation and associate professor of pediatrics in the division of neonatology at Oregon Health & Science University, said in a press release from ATS. “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.”
Finding solutions
Jordan and colleagues sought to explore and quantify the medical, social and financial burdens that a lack of access to private duty nursing places on families of medically complex children, who they defined as children supported by tracheostomy and mechanical ventilation.
From May to July 2023, Jordan and colleagues surveyed families of medically complex children in collaboration with Hello Nurze — a nonprofit organization that provides a free platform to help families find, communicate with and hire private duty nurses — using questions designed to explore the barriers families faced to accessing in-home nursing.
Jordan told Healio that he partnered with Hello Nurze to conduct this research to help develop solutions to the lack of home health nursing, which he described as an “urgent problem.”
“While it’s important to do research to highlight the needs of families of children with complex medical needs, it’s also important to develop solutions,” Jordan said. “Hello Nurze’s free web resource introduces family and nurse profiles, something not previously available within the home health sector. The site serves as a single connection point for both nurses and medically complex families — offering geographic browsing and extensive filter options to help users connect with their ideal local match.”
Survey results
The survey garnered 242 responses from 34 different states and Washington, D.C., through primarily digital channels, such as Facebook and Instagram, according to the press release.
The Hello Nurze team focused on families that were most likely to qualify for in-home nursing. For example, they shared the survey with Facebook groups used by families with children that are medically complex or have a disability.
According to the abstract, results showed that although 86.8% of families desired in-home nursing and had approval of home nursing hours from their insurance carriers, 47.5% reported less than half of these approved hours were covered and 28.3% reported that they did not have an in-home nurse when their child was discharged from the hospital. Notably, 37.9% of families reported extended hospital stays because of a lack of access to in-home nursing.
In terms of financial costs, 87.8% of families reported that they had to make significant employment changes because of a lack of in-home nursing. Moreover, 31.8% of families reported a yearly reduction in household income of $50,000 to $100,000, according to the abstract.
Further, these employment changes were not shared equally between parents, affecting 78.4% of mothers who were surveyed.
“These findings shine light onto often hidden impacts that the home health nursing shortage has on medically complex families and the patients themselves,” Jordan told Healio. “Beyond that, I hope that bringing visibility to the reality of in-home caretaking and the hardships that families endure will motivate policymakers and regional organizations to enact more supportive legislation and services to better support families with disabilities.”
Jordan hopes that future studies will include the perspectives of nurses concerning the reasons behind this shortage.
References:
- Information about Hello Nurze. https://www.hellonurze.com/infos/about. Accessed May 15, 2024.
- Poor access to in-home nursing for medically complex children quantified. https://site.thoracic.org/about-us/news/2024-international-conference-press-release/poor-access-to-in-home-nursing-for-medically-complex-children-quantified. Published May 19, 2024. Accessed May 19, 2024.