Grants

???By standardizing the donor care process, we hope to support families going through this difficult situation of having a sick child and a donor child. With the special care given by each of our multi-disciplinary team members, we hope to provide 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. The goal of this project is to promote care for donors by forming a multidisciplinary donor care team to support families throughout the donation decision making process.

 

Improvements in Action

Standardizing the donor care process will help sibling donors and families make difficult medical decisions. Plans for the multidisciplinary donor team and process include:

  • A Donor Advocate to assist the family in protecting the child’s interests, safety, and wellbeing. The advocate will meet with the family prior to donor matching and throughout the donation decision making process.
  • A Child Life Specialist to provide sibling donors ways to minimize stress and anxiety, and provide comfort, security, and age-appropriate activities throughout the donation process.
  • A Donor Physician — who is not primarily responsible for the recipient’s care — to assess the donor for eligibility and suitability. The physician also will ensure the family understands the process, procedures, risks, and benefits of donation.
  • A follow-up clinic visit made 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 works closely with the multidisciplinary team and family to ensure timeliness, coordination, and communication during the transplant process.

In addition, the team serves as a resource to the donor and family, especially if the recipient is not doing well medically, or if the transplant is not successful. Other plans include providing special recognition for donors and a donor support group.

 

Results – In Progress

A questionnaire will be developed to assess the effectiveness of the new donor care process. All sibling donor families will be surveyed over the span of one year regarding satisfaction with the donor care process, experience of donation, freedom from coercion, freedom from neglect, and participation in decision-making. Surveys of sibling donors and their parents will be conducted pre-transplant, at the four- to six-week follow-up visit, and at six months post-donation.