By Debra Anscombe Wood, RN
Some patients are trached and vented. Other patients are on dopamine drips or receiving total parenteral nutrition. This sounds like a critical-care unit, but hundreds of children in New York and New Jersey are receiving this type of intensive care at home from nurses and other healthcare professionals.
“There are many more children (with complex care needs) going home,” said Ana L. Pacheco, RN, MS, director of patient services at Montefiore Medical Center Home Health Agency in New York City. “There’s more high-tech in the home. It’s incredible. Being in their home is so much better for the children and parents.”
Bringing the child home despite needing complex care reduces the risk of nosocomial infection and often is easier on the family than continued hospitalization, said Kathy Pfeiffer, RN, BSN, director of pediatric clinical operations for BAYADA Home Health Care, headquartered in Mount Laurel, N.J.
“These kids are acute,” Pfeiffer said. “The homes are set up like an ICU.”
St. Mary’s Home & Community Programs in New York City has experienced an increase in home care volume as medical advances have allowed premature and other medically needy children to survive longer with a better quality of life.
“We’re getting sicker kids home, and their needs are much greater,” said Lois Long, RN, nurse coordinator at St. Mary’s Home Care. “Our job is a little more challenging because of that.”
Children may receive home care because they have been diagnosed with pulmonary and cardiac diseases, congenital defects, traumatic injuries and other conditions. They range in age from newborns to young adults. Some may live in shelters or in foster care.
Certified agencies provide intermittent care and licensed agencies offer hourly or shifts of care, including accompanying the child to school. Some organizations, such as St. Mary’s, offer both types of home services.
Teaching and doing
Nurses teach parents how to care for the child while still in the hospital, but once discharged, home care nurses reinforce that education, fine tune techniques, perform treatments such as peritoneal dialysis, tube feedings and nebulizer and monitor the patient’s condition and the family’s progress with providing care. “We do a lot of education,” said Anne Calvo, RN, BSN, MPS, assistant vice president at the Winthrop-University Hospital Home Health Agency in Mineola, N.Y.
Home health nurses collaborate with physicians, parents and a multidisciplinary home team, including rehabilitation therapists, social workers and home health aides.
“We do a lot of care coordination,” said Eno Onda, RN, MEd, coordinator of care in the Children & Family program at the Visiting Nurse Service of New York. “It is patient-centered, family-centered care, and we have to keep good lines of communication.”
VNSNY focuses on short-term care with extensive education to strengthen families to manage the complex care needs of their patients, Onda said. Nurses draw on scientific knowledge, research and nursing theory as they identify needs and coordinate care.
“What the nurse does is very challenging,” Onda said. “You have to know your values and emotions, so you can [hear] the stories people are telling you and put everything together.”
Staying for hours at home, school
Some children require constant care. When their parents go to work or sleep, home care nurses often fill in, even accompanying the child to school to perform necessary treatments and medications, according to physician orders and company protocols.
“They are fragile (children with complex care needs), but despite that, they are kids,” said Donna McNamara, RN, MPA, assistant vice president of community programs at St. Mary’s. “You want to support their growth and development and cognitive function.”
St. Mary’s nurses try not to intrude on family life but become part of the daily flow of activities. McNamara said it takes a team approach to keep these children at home. At BAYADA, a transitional care manager meets with the family in the hospital. Then a clinical manager makes the initial home assessment, collaborates with physicians and other members of the team, and ensures supplies are in the home and the nurse caring for the child is competent to provide treatments. BAYADA conducts simulation drills to hone responses to emergency situations, such as a trach tube coming out or a seizure lasting longer than expected, and reassesses competencies annually.
“In a hospital, you have a team and can call out if there’s a crisis,” said Lisette Alicea, RN, RRT, clinical manager at BAYADA’s Hackensack, N.J., office. “We have to make sure we have the orders [for various situations] and train our nurses to know what to do.”
Challenges and rewards
In addition to providing highly technical care employing the latest equipment and products, home care remains highly personalized. Nurses offer support, while watching for stressors or signs of abuse and neglect.
“It’s difficult for parents to have a sick child, whether born premature or (born) healthy and something happens,” said Alyson Bolton, RN, CPN, BAYADA transitional care manager. “The family dynamics are challenging.”
Nurses help by showing parents they are capable of taking care of the child and identifying what the child can do, added Shawn Carroll, RN, clinical manager at BAYADA in Hackensack.
Psychosocial issues present some of the greatest challenges for nurses.
“We work with child protective services when needed and with social work,” Calvo said. “We are totally involved in the care.”
Home-care nurses collaborate with others on the team and community resources, such as homeless shelters, counseling and housing authority officials, to resolve concerns.“You become part of the families from day one and then watch them grow and become more self-sufficient,” Carroll said. “It’s a special type of nursing.”
Jeanette Carter, RN, team coordinator at St. Mary’s Home Care, agreed it is rewarding to care for patients who came into the program as fragile infants and watch them improve as they become young adults.
Despite poor prognoses, many children experience positive outcomes, walking or talking when experts doubted it possible.
“The good outcomes are really rewarding,” Calvo said. “You see the children blossom.”