Grants

“By standardizing the donor care process, we supported families going through this difficult situation of having a sick child and a donor child. We believe the special care given by each of our multi-disciplinary team members provided the best donation experience possible for each family.” - Bessy Tsai, RN, MS, CNL, Blood and Marrow Transplant Department, Children???s Hospital of Pittsburgh of UPMC

STANDARDIZING THE CARE OF SIBLING BLOOD AND MARROW DONORS

Grant Application

Bessy Tsai, RN, MS, CNL, Blood and Marrow Transplant Department, in collaboration with Palliative and Supportive Care Department and Heme/Onc/BMT Child Life Specialists, Children’s Hospital of Pittsburgh of UPMC, and Galen Switzer, PhD, University of Pittsburgh

Proposed Innovation

Bone and marrow transplants are lifesaving procedures for many malignant and non-malignant conditions, including leukemia, lymphoma, and genetic metabolic disorders. The source of the stem cells used in transplants is a healthy donor — who may or may not be related to the patient.

Although siblings often provide the best match, emphasis of care may be placed on the sick child while overlooking care of the donor child. This project was designed to promote care for donors by forming a multidisciplinary donor care team to support families throughout the donation decision-making process.

Improvements

Through this project, a standardized donor care process was utilized to help sibling donors and families make difficult medical decisions. The multidisciplinary donor team and process included:

  • A Donor Advocate who assisted the family in protecting the child’s interests, safety, and wellbeing. The advocate met with the family throughout the donation decision making process.
  • A Child Life Specialist who provided sibling donors ways to minimize stress and anxiety, and offered comfort, security, and age-appropriate activities throughout the donation process.
  • A Donor Physician — who was not primarily responsible for the recipient’s care —  who assessed the donor for eligibility and suitability. The physician also ensured the family understood the process, procedures, risks, and benefits of donation.
  • A follow-up clinic visit scheduled four to six weeks post donation to evaluate the child’s recovery from the procedure and treat any possible adverse effects, such as prolonged pain or missed school.
  • A Transplant Nurse Coordinator who worked closely with the multidisciplinary team and family to ensure timeliness, coordination, and communication during the transplant process.

Outcomes

The project, which received Internal Review Board (IRB) approval in January 2016, was extended through December 2016. Throughout the year, sibling donors and parents were surveyed regarding satisfaction with the donor care process, donation experience, freedom from coercion, freedom from neglect, and participation in decision-making. Surveys were conducted pre-transplant and at the follow-up visit.

Donors and patients who participated in the study showed strong appreciation for the process and shared their donation experience as positive. The surveys showed they felt cared for and listened to by the multidisciplinary donor team.