Home parenteral nutrition (HPN) is a complex, high-risk therapy that approximately 25 000 to 40 000 children and adults receive in the United States.1,2 The most common diagnoses leading to HPN dependence include short bowel syndrome, motility disorders, and other severe digestive disorders.3 In addition to being life-sustaining, HPN provides improved quality of life and reduced medical expenses compared with prolonged hospitalizations.4 Despite its benefits, HPN is associated with high morbidity, mortality, and expense.4,5
A potentially preventable complication of HPN is central line-associated bloodstream infections (CLABSIs), which can lead to prolonged hospitalization, morbidity, and/or loss of central venous access. Implementation of evidence-based strategies for central vascular access device (CVAD) care by hospital nursing staff has successfully reduced hospital-acquired CLABSIs in several settings.6 The most effective method to prevent CLABSIs is strict adherence to aseptic technique and proper hand hygiene.7
The pediatric HPN program at Boston Children's Hospital (BCH) is an interdisciplinary program that includes specialized nurses, nurse practitioners, registered dietitians, clinical pharmacists, program coordinators, and gastroenterologists. Interdisciplinary HPN programs are well equipped to facilitate transition from hospital to home.8 In addition to proper hand hygiene and aseptic technique, the HPN team provides bedside education to caregivers on caring for a CVAD and administering HPN on discharge. This HPN program team has previously published information about its quality improvement efforts to prevent postdischarge complications.9
Caregivers learn a significant number of specialized nursing tasks to administer HPN safely. The American Society of Parenteral and Enteral Nutrition guidelines indicate that education before discharge from the hospital should be considered a standard of care for new HPN patients.8 In 2014, the nurses in BCH's HPN program developed a 5-session, interactive discharge curriculum for caregivers to prevent postdischarge complications (such as CLABSI), avoid readmissions, and improve caregiver comfort. Each session was conducted at the patient's bedside and lasted approximately 1 hour. The curriculum has become standardized for more than 100 new HPN patients discharged from BCH. In 2014, the BCH baseline rate of CLABSIs was 3 per 1000 catheter days, and 30-day readmissions were 40%. At the time of this writing, the rate of CLABSIs was 0.8 per 1000 catheter days, and 30-day readmission rates were 28%. The HPN 5-session teaching curriculum is delivered by BCH providers to help prepare pediatric patients for initial hospital discharge.
METHODS AND MATERIALS
The HPN nurses facilitate the 5-session discharge curriculum with 1 to 2 caregivers over the course of approximately 2 weeks (Table 1). Caregivers are given adequate time to practice skills and reflect on sessions. The timeline is flexible based on the caregiver's progress and comfort with learning the recommended skills. Also, sessions can be combined at the discretion of the HPN nurse—specifically, sessions 4 and 5. If English is not the caregiver's first language, it is important that a certified interpreter facilitate understanding at every session.
There are recommended steps in preparation before the HPN nurse meets with the family. The HPN prescriber sends preliminary orders to the home infusion company (HIC) to indicate, in general, the type of home infusion pumps and the type of HPN containers to be used. The HPN may be administered as a total nutrient additive (3-in-1) solution or as 2 solutions (2-in-1) with which the intravenous (IV) lipid emulsion infuses via a bifuse extension set separate from the parenteral nutrition (PN) solutions. This allows the caregiver to practice with the specific types and brands of equipment for HPN that they will use at home. The HPN team reviews the patient's health record to ensure that discharge with HPN is medically indicated. The patient's health record is reviewed to confirm the CVAD type and size. On the basis of this institution's policy, radiographs are reviewed to confirm CVAD location and tip placement to confirm appropriateness for PN use (inferior vena cava, superior vena cava, or right atrium). Familiarity with the patient's case also allows the HPN nurse to gather appropriate supplies for teaching (eg, using a low-fidelity manikin for patients with implanted ports vs a manikin with a peripherally inserted central catheter or a tunneled CVAD).
In each approximate 1-hour sequence, the HPN nurse demonstrates a set of tasks. The caregiver then demonstrates skill acquisition by the teach-back method.10 At the beginning of subsequent sessions, the HPN nurse asks the caregiver for another teach-back to assess for skill decay needing remediation. Fundamental lessons, such as the importance of handwashing and aseptic technique, are repeated throughout the curriculum for emphasis.7,11 The HPN team also regularly provides clear communication to the inpatient team, most importantly to the bedside nurse, regarding hands-on training. Bedside nurses are in an ideal position to promote these sessions because they can practice with caregivers and are one of the trusted team members providing continuity of care.
The first teaching session is the most comprehensive. The HPN nurse introduces the various roles of the team members involved in discharge planning. The family is provided with written and video educational materials,11 as well as a list of recommended supplies (Table 2). The HPN nurse evaluates the home environment and counsels the caregiver about issues related to HPN, including storage, preparation, and administration areas.12 The HPN nurse also assesses the caregiver's educational level, learning strengths, and family support.8 Handwashing and setting up a clean workspace are reviewed with the caregiver. Finally, flushing the needleless connector is reviewed with a return demonstration on the low-fidelity manikin.
The HPN nurse first asks the caregiver for a teach-back of handwashing, setting up a clean workspace, and flushing the needleless connector. Then, the focus of session 2 is learning to change a needleless connector. The HPN nurse provides instruction using a low-fidelity manikin. The caregiver then performs a teach-back of a needleless connector change on the manikin. This is repeated until the HPN nurse and caregiver are both comfortable that the caregiver can demonstrate competency. Thereafter, the caregiver is encouraged to practice changing the needleless connector on the patient while supervised by the inpatient bedside nurse.
The focus of session 3 is learning to change a CVAD dressing. The HPN nurse first asks the caregiver to teach-back all previous skills, including handwashing, setting up a clean workspace, and changing a needleless connector. The HPN nurse then provides instruction on changing a CVAD dressing using a low-fidelity manikin. Caregivers then perform a teach-back of a CVAD dressing change on the manikin. This is repeated until the HPN nurse and caregiver express comfort and competency in this skill. During the session, the HPN nurse reviews signs of CVAD exit site issues. The HPN nurse sets a goal with the caregiver and bedside nurse for when the caregiver will be able to perform handwashing, flushing the CVAD, and changing the CVAD dressing on the patient before discharge.
In this session, the caregiver learns to use an infusion pump and how to troubleshoot common infusion pump problems. The HIC liaison, typically a registered nurse, also participates in the teaching session. The HPN nurse again asks the caregiver to teach-back all previous skills. The HPN nurse and HIC liaison explain how to prepare and add IV multivitamins to the HPN bag, hang the HPN bag, and prime the pump.13 In addition, caregivers are taught to correctly administer any other IV medications if needed.
In session 5, the HPN nurse discusses common HPN postdischarge issues and assesses the caregiver's comfort with discharge. The HPN nurse again asks the caregiver to teach back all HPN skills. The caregiver receives verbal and written instructions about how to manage HPN emergencies.13 In particular, the HPN nurse demonstrates how to manage a CVAD fracture. The caregiver is given an emergency supply kit (Table 2). Some caregivers also need to learn how to use a glucometer if patients have a history of hypoglycemia when cycling down off PN. The caregiver demonstrates his or her ability to page the on-call HPN clinician, using the hospital paging system.14
Over the last 4 years, the pediatric HPN program has developed an in-hospital HPN discharge training program for caregivers, and it has become the standard of care throughout the hospital. This HPN 5-session discharge curriculum takes longer than the published average 2.2 days of in-hospital training and the 4.7 days of HPN education in the home.8 Using this process, caregivers perform basic skills at the beginning of each lesson before moving onto the next lesson, which promotes knowledge acquisition but can potentially be protracted in challenging cases.
Discharge planning for HPN requires careful coordination among multiple services. As many as 79% of all hospital readmissions are considered preventable and a direct result of uncoordinated discharge planning.15 Furthermore, Góes and Cabral16 reported that parents and health care professionals identify nurses as the preferred team members to teach complex nursing care for home. Teaching sessions provide an opportunity for caregivers to build a rapport with HPN staff who will be working with them in the ambulatory setting.
When unprepared for discharge, there may be an increased risk of postdischarge issues, such as emergency department visits or readmissions.17 Caring for patients receiving HPN, like caring for patients with any chronic disease, can result in psychological and economic stress for the entire family.18–20 The HPN 5-session discharge curriculum provides opportunities for caregiver support as the family strives to cope with the challenge of caring for a child in the home.21 It has been demonstrated that a 1:1 education method with teach-back has positive effects on reducing medication errors.10 One mother in this HPN program, whose child was previously discharged from another institution with HPN, reported feeling “totally different” about her discharge experience following participation in the 5-session discharge curriculum. She reported an improvement in confidence about safely caring for her child as well as an awareness in outpatient resources. This program previously reported that parents had a high baseline degree of discharge readiness and, when asked to score the quality of discharge teaching, gave it high marks.9
There are challenges in implementing an HPN 5-session discharge curriculum as the standard of care for all new HPN patients. For example, not all hospitals have dedicated programs with specialized HPN staff or resources to dedicate to 1:1 bedside teaching. For complicated cases, clinicians can refer patients to specialized centers of excellence, which have the most experience.22 Whenever HPN patient education is attempted, close communication between all providers is essential to ensure that teaching proceeds in a smooth, step-by-step fashion. Anecdotally, caregivers who accept that HPN teaching is integral to postdischarge safety tend to have the most success. Patients on HPN are at high risk of postdischarge complications, although many of the complications may be associated with underlying comorbidities.23 Quality benchmarks are needed to understand how specific discharge teaching interventions affect important patient-centered outcomes, such as CLABSI rates, readmission rates, cost of care, and quality of life.
In 2014, the HPN program nurses implemented an interactive, 5-session discharge curriculum to promote safe discharge and teach caregivers specialized nursing skills to care for their children. Caregivers had to demonstrate proficiency in these skills before a child was discharged. The authors' institution's training model explained in this article can be used by other HPN providers preparing pediatric patients for initial discharge. Quality benchmarks are needed to understand the impact of innovative discharge teaching efforts in this unique patient population.
1. Mundi MS, Pattinson A, McMahon MT, Davidson J, Hurt RT. Prevalence of home parenteral and enteral nutrition in the United States. Nutr Clin Pract. 2017;32(6):799–805.
2. Delegge MH. Demographics of home parenteral nutrition
. JPEN J Parenter Enteral Nutr. 2002;26(5 suppl):S60–S62.
3. Winkler MF, DiMaria-Ghalili RA, Guenter P, et al Characteristics of a cohort of home parenteral nutrition
patients at the time of enrollment in the Sustain Registry. JPEN J Parenter Enteral Nutr. 2016;40(8):1140–1149.
4. de Burgoa LJ, Seidner D, Hamilton C, Stafford J, Steiger E. Examination of factors that lead to complications for new home parenteral nutrition
patients. J Infus Nurs. 2006;29(2):74–80.
5. Colomb V, Dabbas-Tyan M, Taupin P, et al Long-term outcome of children receiving home parenteral nutrition
: a 20-year single-center experience in 302 patients. J Pediatr Gastroenterol Nutr. 2007;44(3):347–353.
6. Pittiruti M, Hamilton H, Biffi R, MacFie J, Pertkiewicz M; European Society for Clinical Nutrition and Metabolism. ESPEN guidelines on parenteral nutrition: central venous catheters (access, care, diagnosis and therapy of complications). Clin Nutr. 2009;28(4):365–377.
7. Miller DL, O'Grady NP. Guidelines for the prevention of intravascular catheter-related infections: recommendations relevant to interventional radiology for venous catheter placement and maintenance. J Vasc Interv Radiol. 2012;23(8):997–1007.
8. Kumpf VJ, Tillman EM. Home parenteral nutrition
: safe transition from hospital to home. Nutr Clin Pract. 2012;27(6):749–757.
9. Raphael BP, Jorina M, Gallotto M, et al Innovative discharge process for families with pediatric short bowel syndrome
: a prospective nonrandomized trial. JPEN J Parenter Enteral Nutr. 2018;42(8):1295–1303.
10. Kornburger C, Gibson C, Sadowski S, Maletta K, Klingbeil C. Using “teach-back” to promote a safe transition from hospital to home: an evidence-based approach to improving the discharge process. J Pediatr Nurs. 2013;28(3):282–291.
11. Emery D, Pearson A, Lopez R, Hamilton C, Albert NM. Voiceover interactive PowerPoint catheter care education for home parenteral nutrition
. Nutr Clin Pract. 2015;30(5):714–719.
12. Keller SC, Williams D, Gavgani M, et al Environmental exposures and the risk of central venous catheter complications and readmissions in home infusion
therapy patients. Infect Control Hosp Epidemiol. 2017;38(1):68–75.
13. Durfee SM, Adams SC, Arthur E, et al; Home and Alternate Site Care Standards Task Force, American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.). A.S.P.E.N. standards for nutrition support: home and alternate site care. Nutr Clin Pract. 2014;29(4):542–555.
14. Norman JL, Crill CM. Optimizing the transition to home parenteral nutrition
in pediatric patients. Nutr Clin Pract. 2011;26(3):273–285.
15. Polster D. Preventing readmissions with discharge education. Nurs Manage. 2015;46(10):30–37.
16. Góes FG, Cabral IE. Discourses on discharge care for children with special healthcare needs. Rev Bras Enferm. 2017;70(1):163–171.
17. Weiss ME, Sawin KJ, Gralton K, et al Discharge teaching, readiness for discharge, and post-discharge outcomes in parents of hospitalized children. J Pediatr Nurs. 2017;34:58–64.
18. Huisman-de Waal G, Versleijen M, van Achterberg T, et al Psychosocial complaints are associated with venous access-device related complications in patients on home parenteral nutrition
. JPEN J Parenter Enteral Nutr. 2011;35(5):588–595.
19. Engström I, Björnestam B, Finkel Y. Psychological distress associated with home parenteral nutrition
in Swedish children, adolescents, and their parents: preliminary results. J Pediatr Gastroenterol Nutr. 2003;37(3):246–250.
20. Romley JA, Shah AK, Chung PJ, Elliott MN, Vestal KD, Schuster MA. Family-provided health care for children with special health care needs. Pediatrics. 2017;139(1):e20161287. doi:10.1542/peds.2016-1287.
21. McDonald J, McKinlay E, Keeling S, Levack W. How family carers engage with technical health procedures in the home: a grounded theory study. BMJ Open. 2015;5(7):e007761.
22. Merritt RJ, Cohran V, Raphael BP; Nutrition Committee of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. Intestinal rehabilitation programs in the management of pediatric intestinal failure
and short bowel syndrome
. J Pediatr Gastroenterol Nutr. 2017;65(5):588–596.
23. Vallabh H, Konrad D, DeChicco R, et al Thirty-day readmission rate is high for hospitalized patients discharged with home parenteral nutrition
or intravenous fluids. JPEN J Parenter Enteral Nutr. 2017;41(8):1278–1285.