Palliative Cancer Care: Music Video for AYA-Parent Communication and Resilience

描述(由申请人提供)：正在接受高危癌症治疗的青少年/年轻人(Aya)和父母经历了高度痛苦，包括症状痛苦和对癌症、治疗和未来的不确定性。父母的痛苦可能会加剧Aya的痛苦，并使父母在情感上无法联系到他们。父母和阿雅的痛苦也阻碍了阿亚与父母就癌症相关问题的沟通，包括姑息治疗目标、治疗决定和死亡的可能性。这项拟议的研究涉及美国国立卫生研究院、医学研究所和国家姑息治疗研究中心关于阿雅及其父母的情感、精神和实践需求的姑息治疗研究重点。这项研究基于我们目前的试验(NIH 5R01NR008583)的重要发现，该试验确立了治疗性音乐视频(TMV)干预的有效性，以改善正在接受干细胞移植的Aya的积极健康结局；定性研究结果表明，父母通过洞察他们的Aya的观点而从TMV中间接受益，但父母需要支持来管理他们的痛苦并启动与他们的Aya的重要对话。通过在我们已经有效的TMV干预中增加父母干预成分，我们建议父母将会有更少的痛苦，父母和Aya将感受到更好的家庭环境，这反过来将导致在当前R01中没有观察到的治疗期间额外的显著Aya结果。具体目的是比较TMV和TMV加父母成分(TMV P)对Aya及其父母的结果的有效性；并使用混合方法确定父母痛苦和父母感知的家庭环境与Aya结果的关系。Aya(n=129)和亲本将被随机分为TMV或TMV P条件。所有AYA参与者将接受TMV干预；被随机分配到TMV P的父母将接受父母干预部分。这项研究的结果将通过增加我们对父母/Aya需求的了解以及关于父母痛苦和积极的健康因素与Aya结果的关系的知识，同时直接解决父母和Aya在治疗期间的相互关联的需求，直接影响对数千名患有高危癌症的父母和Aya的护理。

DESCRIPTION (provided by applicant): Adolescents/young adults (AYA) undergoing treatment for high risk cancer, and parents, experience high distress, including symptom distress and uncertainty about the cancer, treatments, and future. Parents' distress can exacerbate AYA distress and render the parent emotionally unavailable. Parent and AYA distress also hinders AYA-parent communication about cancer-related concerns, including palliative care goals, treatment decisions, and the possibility of death. The proposed study addresses palliative care research priorities of the NIH, Institute of Medicine, and National Palliative Care Research Center related to emotional, spiritual, and practical needs of AYA and their parents. The study builds on significant findings from our current trial (NIH 5R01NR008583) which established efficacy of a Therapeutic Music Video (TMV) intervention to improve positive health outcomes for AYA undergoing stem cell transplant; qualitative findings indicated parents derive indirect benefit from the TMV by gaining insight into their AYA's perspectives, but parents require support to manage their distress and initiate important conversations with their AYA. By adding a parent intervention component to our already efficacious TMV intervention, we propose parents will have less distress, and parents and AYA will perceive better family environment, which in turn will result in additional significant AYA outcomes during treatment not observed in the current R01. Specific Aims are to compare the efficacy of a TMV with a TMV plus parent component (TMV+P) on outcomes for both AYA and their parents; and determine relationships of parent distress and parent perceived family environment with AYA outcomes using a mixed methods approach. AYA (n = 129) and a parent will be randomized to the TMV or TMV+P condition. All AYA participants will receive the TMV intervention; parents randomized to the TMV+P will receive the parent intervention component. Findings from the study will directly impact care for thousands of parents and AYA with high risk cancer by increasing our understanding of parent/AYA needs and knowledge about relationships of parent distress and positive health factors to AYA outcomes, while directly addressing the interrelated needs of parents and AYA during treatment.