Educational Interventions Prove Beneficial for Caregivers of Pediatric Patients Receiving HSCT


Nurse researchers sought to improve the communication between the hematopoietic stem cell transplantation care team and pediatric patient caregivers.

Early discharge teaching better equipped caregivers to take care of pediatric patients receiving a hematopoietic stem cell transplantation (HSCT) by decreasing many of their concerns, according to investigators who performed a quality improvement project to increase knowledge and communication between the HSCT care team and caregivers.

To establish measures and evaluate if there is an improvement, a caregiver confidence survey was completed at admission, and after engraftment and discharge education sessions; direct feedback was also received from the team. The survey asked caregivers 2 open-ended questions and in response, at baseline 50% of caregivers expressed concerns with managing care after bone marrow transplantation and 80% wanted more education to feel confident; however, after both education sessions 20% and 0% had the same concerns, respectively.

Although caregivers (n = 14) were asked 8 questions to be answered on a 5-point Likert scale of strongly disagree (1) disagree (2) neutral (3) agree (4) strongly agree (5), improvements were seen regarding the following 2 questions:

  1. I feel confident helping my child maintain their nutrition/hydration at home post bone marrow transplant, including adequate food and drink intake.
  2. I feel confident managing common symptoms including nausea, vomiting, and pain at home post bone marrow transplant.

Following the intervention, caregivers demonstrated a 12% and 14% improvement from baseline, respectively, in these 2 domains. The remaining 6 questions saw high scores at baseline with a 4% or less improvement from admission to discharge.

Qualitive feedback demonstrated that nurses felt improved visual tools were needed to teach caregivers about medication and caregivers wanted medication teaching at the time of administration as well as clear goals for hydration and nutrition. Caregivers were grateful for time spent with providers and had sufficient time to ask questions. The project’s educational intervention had a completion rate of 71%, meeting the goal of 50%.

“Caregivers want as much information about the transplant process as possible,” Steffani Maier, DNP, APRN, FNP-C, BMTCN, a nurse practitioner at Cincinnati Children’s Hospital Medical Center in the Division of Bone Marrow Transplantation and Immune Deficiency unit, said, in a presentation of the findings during the 2023 Tandem Meeting. “This is consistent [with] literature that caregivers have a great deal of confidence in caring for their child at home post HSCT. However, they have a strong desire for more information for them to feel that they are prepared to perform at the highest level of caregiving.”

The model for improvement, which has demonstrated success in healthcare implementing practice changes with the goal of improving workflow and patient outcomes, took place over a 12-week period with a 7-step process of forming a team, setting aims, establishing measures, selecting changes, testing changes, implementing changes, and spreading changes. The model also included an act, plan, do, study, cycle to test changes in a work setting.

“Changes [in the model] were selected based on direct feedback from parents who have already undergone the HSCT process and the multidisciplinary care team,” the study authors wrote. The multidisciplinary team included nurses, pharmacy, social work, nurse practitioners, physicians, and department leadership.

Although there is limited knowledge on caregiver experiences as well as needs, unplanned readmissions, medication errors, and adverse patient outcomes can be common issues during the discharge process. Caregivers received a discharge bundle covering symptom management, when to call the doctor or go to the emergency department, nutrition plans, a review of medications, concerns as well as barriers, and it ensured home care teaching is complete. Despite positive feedback on discharge education and high confidence scores, caregivers requested more information.

Limitations of the study included the small sample size and that the parent confidence survey has not been validated as a tool. However, the study authors noted that the project plan could be adapted for other pediatric patients that have a prolonged hospital stay, including pediatric oncology patients. Moreover, educational interventions could be used to reduce the length of hospital stay and readmission rates for complications unrelated to and following bone marrow transplantation.

Next steps for the investigators include designing a shared communication tool for the multidisciplinary team regarding discharge, setting clear goals regarding hydration and nutrition, and implementing medication teaching upon admission. They are also looking to expand their educational abilities to meet the needs of the Arabic and Spanish speaking families seeking care in their institution.


Maier ST, Dandoy CE, Cafasso M. Status post pediatric hematopoietic stem cell transplant: preparing caregivers for discharge. Presented at: 2023 Tandem Meetings and Transplantation & Cellular Therapy Meetings of ASTCT and CIBMTR; February 15-19, 2023; Orlando, FL.

Related Videos
Elizabeth Aronson
Shivani Gopalsami
Donna Catamero
Verina on Tackling Neurological Toxicities From CAR T-Cell Therapy
Sherry Adkins Talks Primary Care Provider Communication Following CAR T-cell Therapy
Gretchen McNally Speaks to the Role of Oncology Nurses in the Opioid Epidemic
Related Content
© 2024 MJH Life Sciences

All rights reserved.