For children needing parenteral nutrition (PN) — nutrition given through an intravenous line (IV) — the journey from the hospital to home was once long and arduous. But the prospects for these patients are much brighter today, thanks to the care provided by the Boston Children’s Hospital Home Parenteral Nutrition (HNP) Program.
The program — comprised of nurses, advanced practice registered nurses, physicians, dietitians, pharmacists, care managers, and administrative staff — is focused on ensuring families have the education, training, and supplies to safely provide PN for their children at home. Since its founding in 1981, the program’s team — in partnership with the hospital’s Care Management team — has served roughly 150 patients a year.
“HPN patients are at high-risk for needing life-sustaining therapy,” says Mary Gallotto, BSN, RN, CPN, a staff nurse with the HPN Program. “I have the privilege to care for these patients for months to years, working to normalize their everyday lives while striving to keep them safe at home.”
Making parenteral nutrition work in the home
As recently as 20 years ago, children and adolescents receiving PN were often delayed in being discharged or unable to go home due to this therapy’s complexity and the risk for central-line associated bloodstream infections. Today that is no longer the case, as the HPN Program’s nurse practitioners and registered nurses provide education and training to families so they can care for their child at home while minimizing infection risk.
A key partner in HPN is Boston Children’s Care Management Program. Once the program determines that someone is a candidate for HPN, they work with the nurse case manager to identify outside organizations to provide supplies, medications, and appropriate nursing care at a child’s home. The nurse case manager ensures all discharge supplies, durable medical equipment (DME), and medications are ordered and delivered by the home infusion company to the bedside, as needed. The nurse case manager collaborates with the family, VNA, and HPN team to set up nursing visits when the patient is discharged.
“The nurse case manager’s role is crucial to the success of HPN; our patients and families would not be able to stay at home without their efforts to coordinate home infusion, home nursing care, and DME suppliers,” says Shahzina Karim, MSW, BA, BSW, LICSW, senior director of the Care Management Program.
From caregivers to ‘health care providers’
It’s no small feat to go from being a bedside caregiver to becoming a primary at-home health care provider. Many parents and guardians find themselves in this position, which is precisely why the HPN Program was established and works to facilitate the highest possible standards of care in the home
When it’s clear that a child on PN can go home, the family goes through a five-session education program developed by Mary Gallotto, BSN, RN, CPN, a staff nurse in the HPN Program.
“The best part of working with this patient population is contributing to the evolution of patient and family caregiver skill-building as they gain confidence in their ability to provide care with increasing levels of independence over time,” says Jennifer McClelland, MS, FNP-BC, an advanced practice registered nurse in the HPN Program. “It is incredibly rewarding to support a patient and family from their initial inpatient consultation, when they often can barely fathom what life at home on PN might look like, to troubleshooting with them in clinic. And then to support children and adolescents as they attend their first sleepover, play in a soccer tournament, or go on their first family vacation.”
After the five education sessions have been completed, the families go through a lifelike home simulation experience. The child’s hospital room is arranged to reflect their bedroom at home. This gives caregivers a sense of how to best set up their child’s bedroom in the home — planning where supplies should be stored to identify potential risks or solving other logistical challenges. Based on how the caregivers perform in this simulation, the nurse can pinpoint areas to improve on well before the family and child are discharged.
Finally, the day before discharge, team members from Care Management and the HPN Program meet with the family to ensure that the caregiver is competent and confident in giving medications, managing home supplies, and arranging follow-up appointments and that all of their questions are answered.
Even with all the planning that goes into bringing these children home, HPN complications may occur. The teams use telehealth visits to bolster caregiver skills and troubleshoot as needed. After being home for a week, the child has a follow-up visit to identify any complications that may have occurred.
Moving the care — and the child — from hospital to home
The HPN Program at Boston Children’s has served hundreds of patients to date — and has provided guidance to other health care centers across the United States and around the world.
The HPN Program’s impact is tangible. We have helped many families fulfill their dream of having their children spend time at home, instead of in the hospital.
And this is the true goal of the HPN team — to build the necessary skills and confidence in family caregivers and improve the safety and quality of each child’s IV nutrition care to grow and thrive where they belong — with their families at home.
Learn more about Boston Children’s.
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