Kristin Knudson, BSN, RN is a private-duty pediatric nurse in Seattle. She is a graduate of the University of Washington Bothell, and a member of Sigma Theta Tau. She has been working one case for more than seven years.
There are growing numbers of children with medical complexities, those children with repeated and prolonged hospitalizations along with technology-dependence and multiple organ system involvement. According to the Centers for Medicare and Medicaid Administration, pediatrics is the fastest-growing segment of care in home health. The overarching goal of home health care is to optimize each child’s health and function while minimizing recurrent or pro-longed hospitalizations through the provision of comprehensive, cost-effective, family-centered health care rendered in a nurturing home environment.
Kristin’s philosophy: Provide ways for children to thrive #
Many nurses work private-duty pediatric cases, but little is known about their significant role in advocating and caring for a special population of children.
Children needing this care usually have four or more complicated health conditions and are technology dependent. Their care includes all routes of medication administration, parental nutrition, tracheostomy care, oxygen supplementation/monitoring, enteral feedings, peritoneal dialysis and ventilator dependency. These children are medically fragile, and their condition could change in seconds.
Children with these medical needs are eligible for 4 – 16 and sometimes 24 hours a day of licensed nursing care in-home although this varies from state to state. Thus, without a private-duty nurse these children could spend their lives in an institutional setting, such as the hospital or the few facilitates capable of meeting their unique needs. Families who find themselves without nurses in the community run the risk of extreme exhaustion and job loss when delivering institutional-level care solely themselves.
These children can wait in the hospital past their eligible date of discharge when no private-duty nurses are available. While waiting in the hospitals, the children could be living at home. “While hospitals help the children sustain life, they don’t provide a way for them to thrive,” Kristin said. “This population of children is growing and will continue to grow, and they have the right to thrive in their homes with their families and local community.”
What private-duty work looks like #
The role of a private-duty nurse includes preventing medical complications that could result in facility placement, providing medically necessary nursing care to clients in their homes, providing care for clients transitioning to in-home care and assessing, providing and monitoring professional care for clients. No special training or credentialing is required, and nursing programs do not prepare new graduates to care for technology-dependent children by themselves (Foster, Agrawal & Davis, 2019).
Kristin shares she had three to four days of training that was primarily shadowing the nurse who was leaving. The work involves being acutely aware of what is always going on with the client. In addition to basic nursing care, private-duty nurses also attend to the psychosocial needs of the children, which can include accompanying them daily to school and community outings.
As a result of the technological advances that have been made and continue to be made, increasingly more private-duty nurses are needed for children, youth and adults who are medically complex/technology dependent.
What makes it hard #
Kristin unfortunately works in isolation. She has other nurses she interacts with related to her client, but there aren’t any staff in-services/meetings, nursing associations, journals or conferences in her area of work. Supports are lacking to advocate for this sector of nursing. In addition, with Medicaid most often the source of payment, it rarely compares with local prevailing wages (Foster, Agrawal & Davis, 2019). As a result, Kristin has one week of paid vacation each year, one week of sick leave, no shift or weekend differentials, no continuing education reimbursement and no retirement plan. She pays about 40% of her health insurance coverage, and in the past, nurses have found it difficult to get coverage for family. “The private-duty pediatric nurses I know are women,” Kiristin said. “We are experiencing the gender pay gap.”
While care in-home is less expensive than hospital care, it should support a living wage with benefits for the skilled nurses. Policies to support private-duty nurses are urgently needed to safeguard the high quality of care for these children as well as assure the workforce has the nurses needed for this subset of vulnerable children with complex medical needs.
What makes it rewarding #
Kristin said it is a rewarding job as she can provide comprehensive care for her client who is medically complex.
“These children can and do thrive,” she says. But she knows many children won’t have the opportunity so long as there are not enough nurses who are able to meet their needs given the unsustainable wages/benefits and lack of professional support. “It is a great job, I love my job, but it is hard to find nurses willing to take on this specialty when they don’t have a sustainable wage, resources and support,” Kristin said.