How Private-duty Nursing Empowers Children With Complex Needs At Home

The U.S. is currently caring for a higher number of children with severe and medically complex diagnoses than ever before. As these children transition into adulthood, the health care system will face increasing challenges in providing care for individuals living with rare or progressive diseases that were rarely encountered in the past. This is where private-duty nurses can play a crucial role in making a positive impact.

While both private-duty and home health nursing involve caring for children with medically complex needs, there are some differences. Pediatric private-duty nursing (PDN) focuses on more individualized, hands-on patient care in a child’s home or school. This approach can lead to improved medical outcomes, cost savings and reduced hospital readmissions.

“Maxim Healthcare Services offers comprehensive care and services for our patients,” Kelly Ceron, regional vice president of clinical operations, told Home Health Care News. “Our approach involves creating personalized care plans developed with input from a team of physicians, therapists, and parents or legal guardians. This collaborative approach allows us to address each child’s unique medical and psychosocial needs to help them achieve their milestones and goals. By providing tailored care, we aim to support each child’s health while ensuring that their families feel secure in addressing their individual needs. When patients and their families feel valued and respected through our personalized care approach, satisfaction and compliance improve, leading to better health outcomes.”

Maxim Healthcare Services, based in Columbia, Maryland, provides a variety of services, including skilled nursing, personal care, respite care, behavioral care and physical rehabilitation for individuals with chronic and acute illnesses and disabilities.

In pediatric PDN, the focus goes beyond clinical care to developmental progress. Nurses may assist their young clients in getting ready for the day, perform initial assessments and care, accompany them on the bus to school, address their medical needs, and support their socialization and participation at school. Additionally, nurses may engage in therapeutic play to promote developmental skills while delivering care.

“At Cincinnati Children’s, we believe our PDN program plays a significant role in the overall development and well-being of children,” Jennifer Gold, senior clinical director of home care services at Cincinnati Children’s, told HHCN. “By offering our services in the home, children can attend school with one of our nurses. This is important because it allows patients to interact normally with peers of the same age while meeting academic requirements. Additionally, remaining at home allows them to be part of the family environment and participate in family dynamics.”

Cincinnati Children’s is a nonprofit, comprehensive pediatric health system with 27 locations in Ohio and Kentucky.

Private-duty nursing offers significant advantages for patients’ parents, enabling them to maintain their jobs and reduce financial stress. Gold explained that this arrangement allows parents to focus more on their parental responsibilities rather than solely being responsible for their child’s health care.

This personalized level of care adopts a holistic approach to the child’s health by addressing medical needs and emotional and social development. It ensures that children receive consistent support tailored to their developmental stages.

“Holistically, it helps them achieve milestones in a nurturing environment,” Kristy Rohwedder, president of Private Duty Nursing at Aveanna Healthcare, told HHCN. “Individual attention strengthens the child’s emotional security and fosters a sense of stability, which is crucial for their overall well-being.”

Aveanna Healthcare provides in-home pediatric and adult care across more than 260 locations in 30 states.

In the home setting, nurses perform respiratory treatments, suctioning, tracheostomy care and changes, gastrostomy tube feedings, catheter care, manage complex medication regimens and ventilator support. They also provide therapies and engage with clients one-on-one, encouraging them to progress, gain independence and live fulfilling lives at home.

“This type of nursing allows us to manage chronic conditions or acute episodes more effectively in a controlled environment, minimizing infection exposure,” Rohwedder noted. “We can promptly intervene if we notice any red flags and ensure that families are educated about managing those conditions.”

These factors allow private-duty nurses to integrate into a child’s daily life, providing both medical and emotional support while contributing positively to the child’s well-being at home rather than in a hospital.

“Private duty nursing provides one-on-one attention in a familiar setting,” Rohwedder told HHCN. “This fosters comfort and trust within the family, enhancing the child’s overall comfort.”

PDN allows for care continuity in the home

PDN promotes continuity of care by ensuring that the same nurse or a consistent team of nurses provides care for the child. This approach enhances communication, strengthens relationships and ensures a deeper understanding of the child’s health history and evolving needs, according to Rohwedder.

“Continuity of care is established by assigning a consistent nurse or group of nurses to the child,” Ceron explained. “This continuity is vital for enhancing the child’s overall health, as it builds trust and reduces feelings of vulnerability. Families often feel overwhelmed when inviting nurses into their homes, and knowing that familiar caregivers will be present significantly alleviates their stress. Trust in the nurses allows family members to step back and enjoy their roles as family members rather than solely as caregivers, which can help prevent caregiver burnout.”

Ceron also noted that nurses who consistently care for a child become familiar with the child’s baseline condition, enabling them to recognize any changes or concerns. By building rapport with the family and collaborating with other health care team members, these nurses enhance communication and teamwork, leading to improved care for the child.

“Regarding overall development and well-being, having specific patient-oriented care plans is crucial so that the home nurse or other caregivers can collaborate effectively with the child’s clinical providers,” Gold mentioned. “For example, if a patient is receiving occupational and physical therapy, the nurse can implement some components of the home exercise program while also providing nursing care.”

The home care team and hospital managing providers collaborate at Cincinnati Children’s Medical Center. They also connect with the patients’ schools, community organizations and parents.

“All of these people come together to create a personalized plan to keep the child home healthy and safe,” Gold said.

Reducing hospital stays and lowering costs

One challenge of providing PDN is the reimbursement structure, according to Gold.

“I have colleagues that struggle with reimbursement,” she said. “When you think of the cost of repeating and recruiting staff, providing competitive wages and benefits structure, the reimbursement to do that in a positive way is difficult.”

This often results in insufficient PDN agencies to cover the number of patients needing care.

PDN for medically fragile children enrolled in Medi-Cal, enables children with complex medical needs to receive skilled nursing care at home, at a cost to Medicaid that is less expensive than traditional hospital costs, according to a study by Berkely Research Group (BRG).

BRG estimates that the Medi-Cal costs per day for children receiving PDN at home are approximately $6,330, or 90% less than the daily cost of care in a hospital.

Previous research has found that approximately 25% of hospital days for children with medical complexity occur after the point at which the children are medically ready for discharge.

A PDN agency’s inability to pay competitive wages at existing Medi-Cal rates currently hinders the ability to shift medically complex children from hospitals to homes. If home nursing rates were increased by 40%, allowing 25% of inpatient hospital days for such children to be shifted to the home, Medi-Cal would save $292 million annually and realize a 2.5-time return on investment, according to BRG.

“Having the ability to manage the child’s care proactively, we can help detect issues early and prevent escalation. If we see a condition deteriorating, we can identify and respond,” Rohwedder said. “This mitigates the need to return to the hospital saving money.”

Private-duty nurses help manage chronic illnesses effectively because the home is a more controlled environment, and they can reduce exposure to infection or disease, limiting hospitalization days.

“Private duty nurses are a lifeline for these patients in the home as well as for the parents and caregivers,” Gold said.

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