HAPDON1: How Donating Bone Marrow for Their Child’s Stem Cell Transplant Impacts Parents

Impact of Donation on Parental Haplotype Donors (and Non-Donors) of Children Treated with Hematopoietic Cell Transplant

Category:

Psychology

Diseases Treated:

Non-therapeutic

Eligibility Overview:

This is a non-therapeutic clinical trial open only to parents of St. Jude patients.

  • Parent of a child who received a haploidentical or unrelated donor transplant at St. Jude Children’s Research Hospital between January 1, 2006 and December 31, 2015
  • Speaks and reads English
  1. Brief Summary

    Haploidentical hematopoietic cell transplant (HCT), particularly when used for patients with relapsed or refractory leukemia, including those that have failed a prior transplant, is associated with high rates of morbidity and mortality. Many parents who agree to donate will also face the loss of their child.

    We do not know how being a donor impacts parental bereavement response. Moreover, there have been no studies on how parental donations affect the parent-child relationship in HCT survivors.

    The process of being assessed as a potential donor for one’s child who is facing a life-threatening illness is likely to be associated with unique stresses and psychological challenges. The ultimate choice of a donor may have both positive and negative consequences for the parent chosen as donor as well as the non-donor parent.  These consequences are likely to differ dramatically, depending on the outcome of the transplant. A donor parent may experience an increase in self-esteem and feel an enhanced connection with the child when the transplant is successful. In contrast, the donor parent may experience a greater sense of failure and guilt, and have a more difficult or complicated grief response if the child dies. These responses may differ for the non-donor parent, which could affect the family relationships.  

    This pilot study will look at the impact of donation on these parents.

    Primary Objectives

    • To examine the psychosocial functioning of parents whose child received a haploidentical transplant with a parental donor
    • To compare psychosocial outcomes in parents based on donor type and child outcome

    Eligibility Criteria

    Inclusion criteria include:

    • Parent of a child who received a haploidentical or unrelated donor transplant at St. Jude Children’s Research Hospital between January 1, 2006 and December 31, 2015
    • Speaks and reads English

    Study Sites

    St. Jude Children’s Research Hospital, Memphis, Tennessee

  2. About this study

    Stem cell transplants, also known as bone marrow transplants, are often used in the treatment of leukemia and other serious childhood illnesses. If a donor who matches the patient’s tissue type can’t be found, a partially matched donor may donate cells. This may be a parent.

    Parents of sick children face many challenges and emotions. Non-donor parents and the entire family may also be affected.

    Researchers in this study want to learn more about the effects of parental donation on the family. We will do that by surveying parents whose children had stem cell transplants at St. Jude over a 10-year period. The survey may include questions about quality of life, social support, emotional well-being and family functioning.

    Purpose of this clinical trial

    The main goal of this study is find out how parents and families are affected when their child receives a stem cell transplant from a parent donor.

    Eligibility overview

    • Parent of a child who received a haploidentical or unrelated donor transplant at St. Jude Children’s Research Hospital between January 1, 2006 and December 31, 2015
    • Speaks and reads English
  3. HAPDON1 Quick View
    Sponsor St. Jude Children’s Research Hospital
    Trial Start Date January 2018
    Estimated Enrollment 387
    Study Type Observational
    Conditions Non-therapeutic
    Ages All
    Principal Investigator Sean Phipps, PhD
    Study Sites St. Jude Children’s Research Hospital
    For a consultation or to discuss HAPDON1 St. Jude Physician/Patient Referral Office
    1-888-226-4343
    referralinfo@stjude.org

St. Jude Children’s Research Hospital
262 Danny Thomas Place
Memphis, TN 38105  USA
Voice: 1-888-226-4343 or 901-595-4055
24-Hour Emergency Access Pager: 1-800-349-4334
Email: referralinfo@stjude.org

The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.