Family Decision Making in Pediatric Bone Marrow Transplant

描述（由申请人提供）：同种异体骨髓移植（BMT）与健康的兄弟姐妹供体是一种潜在的治愈方法，尽管危及生命，治疗某些高风险儿科疾病。进行移植手术的决定很复杂。这一程序可以挽救患病儿童的生命，但使健康的兄弟姐妹面临疼痛、受伤、感染的身体风险，并感到有责任拯救患病兄弟姐妹的心理负担。这些孩子通常都是未成年人，所以父母必须权衡每个孩子的风险和利益，把他们置于一个矛盾的位置。如果与孩子们协商，他们不太可能拒绝，因为患病的孩子很有可能不治疗而死。令人惊讶的是，人们对家庭如何处理这一重大决定以及他们感知和考虑的风险和利益知之甚少。移植社区和法院普遍认为，捐赠的兄弟姐妹从移植中受益。然而，初步的儿科研究表明，患有癌症的儿童的兄弟姐妹有适应问题的风险。此外，四项回顾性研究表明，小额捐助者感到被排除在决策过程之外。这项涉及18-22个家庭的四点纵向试点研究的目的是利用基础理论技术，描述父母、患者、供体和非供体兄弟姐妹在决策过程中的经历，并关注他们对利益和风险的看法。我们将以家庭为分析单位，发展与治疗决策相关的实质性理论。具体目标是：(1)在考虑为患有癌症的儿童进行同种异体骨髓移植的家庭中，使用扎根理论技术开发一个基于数据的、实质性的家庭决策过程理论；(2)确定从儿童接受异基因骨髓移植的家庭中收集数据的可行性。目的是描述家庭决策过程，并确定可能导致家庭成员不良结果的因素。这些数据将有助于指导干预措施的设计，以改善移植过程中所有家庭成员的结果。此外，本研究将提供初步数据，以告知使用兄弟姐妹捐赠者的伦理理由和此类捐赠的监管框架。总而言之，该项目将为假设检验大型多地点研究提供坚实的基础，然后将其转化为干预研究。公共卫生相关性：关于同种异体儿童骨髓移植的家庭决策信息将适用于并有助于设计干预措施，以改善其他危及儿童生命的疾病的家庭决策结果，并可能在其他高压力家庭情况下。虽然幸运的是，危及生命的儿科疾病相对罕见，但它们对整个大家庭甚至社区的影响是巨大的。

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.