Cancer Control Research5R21CA131875-02
Pentz, Rebecca D.
FAMILY DECISION MAKING IN PEDIATRIC BONE MARROW TRANSPLANT
DESCRIPTION (provided by applicant): Allogeneic bone marrow transplantation (BMT) with a healthy sibling donor is a potentially curative, though life-threatening, treatment for certain high risk pediatric diseases. The decision to proceed with transplant is complicated. The procedure may save the life of the ill child, but subjects the healthy sibling to the physical risks of pain, injury, infection and the psychological burden of feeling responsible for saving the ill sibling. The children are typically minors, so the parents must weigh the risks and benefits for each child , placing them in a conflicted position. If the children are consulted, they are unlikely to refuse given the grave possibility that the ill child may die without treatment. Surprisingly, little is known about how families approach this momentous decision and the risks and benefits they perceive and consider. It is widely assumed by the transplant community and the courts that donor siblings benefit from transplant. However, preliminary pediatric research demonstrates that siblings of children with cancer are at risk for adjustment problems. Further, four retrospective studies suggest that minor donors feel excluded from the decision-making process. The purpose of this four-site, longitudinal pilot study of 18-22 families is to describe, using grounded theory techniques, the experiences of parent/s, patients, donor and non-donor siblings during the decision-making process with attention to their perceptions of benefits and risks. We will develop a substantive theory related to treatment decision- making with the family as our unit of analysis. The specific aims are (1) to develop a data-based, substantive theory of the family decision-making process in families considering an allogeneic bone marrow transplant for a child with cancer using grounded theory techniques; (2) to determine the feasibility of accruing and collecting data from families in which a child is undergoing an allogeneic bone marrow transplant with a minor sibling donor. The goal is to describe the family decision-making process and also to identify factors that may lead to poor outcomes for family members. These data will help guide the design of interventions to improve outcomes for all family members during transplantation. In addition, this study will provide preliminary data to inform the ethical justification for using sibling donors and the regulatory framework for such donation. In sum, this project will provide the firm foundation for a hypothesis- testing large multi-site study that will then translate into an intervention study. PUBLIC HEALTH RELEVANCE: Information on family decision-making about an allogeneic pediatric bone marrow transplant will be applicable to and helpful in designing interventions to improve the outcomes of family decision-making in other pediatric life threatening diseases, and potentially in other high stress family situations. Although, fortunately, life-threatening pediatric diseases are relatively rare, their impact on entire extended families and even communities is immense.