This content origi­nally appeared in the Spring/​Summer 2020 issue (PDF) of The Washington Nurse magazine. See the full set of stories on long-term care.

Wa nurse kristin knudson

Kristin Knudson, BSN, RN

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.

While hospitals help the children sustain life, they don’t provide a way for them to thrive.

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.