Parent-Child Communication About Cancer

描述(由申请人提供)：在美国，每年有超过12,400名19岁及以下的儿童被诊断患有癌症，每年有2,300人死于这种疾病(Ries et.等人，2004年)。患有癌症的孩子的父母面临的最棘手的问题之一是，我如何与我的孩子谈论癌症？此外，预后不佳的孩子的父母也在为这样一个问题而苦苦挣扎：“我该如何与我的孩子谈论死亡的可能性？”父母经常向医疗保健提供者寻求指导，但最终父母必须确定他们与孩子分享的关于疾病、治疗和预后的信息的类型和数量。此外，父母必须决定如何在管理自己和孩子的恐惧和担忧的背景下平衡这些信息。尽管国家癌症研究所(NCI)建议父母就癌症公开和诚实地交流，但很少有研究在儿科肿瘤学中解决这一问题。此外，还没有研究在父母和孩子讨论诊断时直接观察他们，也没有研究沟通如何随着时间的推移与应对和适应有关。这个应用程序将使用问卷和直接观察来评估关于癌症的亲子沟通，并确定沟通的内容和过程如何与家庭结果相关联。将从两个地点招募560多个新诊断为癌症或复发儿童的家庭，在儿童确诊后一个月完成有关应对、沟通和适应的问卷调查。预计约224个家庭将在孩子确诊后3个月完成家庭沟通观察，并在确诊后12个月完成后续问卷调查。我们将追求三个目标：1)使用标准化的观察方案来描述关于癌症的亲子沟通的内容和过程，并考察沟通在医疗(例如诊断、预后)、儿童(例如年龄、性别)和家庭(例如丧失史、家庭环境)因素的作用下的差异；2)检查父母和孩子的沟通与痛苦之间的关系；3)研究沟通与儿童随后的应对和情绪痛苦之间的关系。这项研究具有潜在的重大公共卫生影响，因为这项研究的发现将使医疗保健专业人员能够更好地指导父母如何与孩子沟通，以便通过提供关于分享信息的内容和数量的指导，优化孩子的适应和护理。因此，这项拟议研究的长期目标是为卫生保健专业人员提供基于证据的建议，以促进关于儿童癌症的亲子沟通，并减少儿童和父母的心理痛苦。

DESCRIPTION (provided by applicant): Over 12,400 children age 19 and under are diagnosed with cancer in the U.S. each year, and 2,300 die annually from the disease (Ries et. al., 2004). One of the most difficult questions facing parents of children with cancer is, "How do I talk with my child about cancer?" Further, parents of children with a poor prognosis struggle with the question, "How do I talk with my child about the possibility of death?" Parents often turn to healthcare providers for guidance, but ultimately parents must determine the type and amount of information they share with their child about the disease, treatment, and prognosis. Further, parents must decide how to balance this information in the context of managing their own and their child's fear and worries. Although the National Cancer Institute (NCI) has recommended that parents communicate openly and honestly about cancer, little research has addressed this issue in pediatric oncology. Moreover, no studies have used direct observation of parents and children as they discuss the diagnosis or examined how communication is associated with coping and adjustment over time. This application will use questionnaires and direct observation to assess parent-child communication about cancer and determine how the content and process of communication are associated with family outcomes. Over 560 families of children newly diagnosed with cancer or a recurrence will be recruited from two sites to complete questionnaires about coping, communication and adjustment 1 month after the child's diagnosis. Approximately 224 families are expected to complete an observation of family communication 3 months after the child's diagnosis, and follow-up questionnaires will be completed 12 months after diagnosis. We will pursue 3 aims: 1) To use a standardized observation protocol to describe the content and process of parent-child communication about cancer and examine differences in communication as a function of medical (for example, diagnosis, prognosis), child (for instance, age, gender), and family (for example, history of loss, family environment) factors; 2) To examine associations between communication and distress in parents and children; 3) To examine associations between communication and children's subsequent coping and emotional distress. The study has potentially significant public health implications, as findings from this study will enable healthcare professionals to better guide parents on how to communicate with their child in order to optimize their child's adjustment and care by providing guidelines about the content and quantity of information to share. Thus, the long-term goal of the proposed research is to provide health care professionals with evidence based recommendations for facilitating parent-child communication regarding childhood cancer and to decrease children's and parents' psychological distress.