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。父母的痛苦会加剧AYA的痛苦，并使父母在情感上不可用。父母和AYA的痛苦也阻碍了AYA父母对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。拟议的研究解决了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的姑息治疗研究重点，涉及AYA及其父母的情感，精神和实际需求。这项研究建立在我们目前试验的重大发现之上（NIH 5 R 01 NR 008583），其确立了治疗性音乐视频（TMV）干预对改善接受干细胞移植的AYA的积极健康结果的功效;定性研究结果表明，父母从TMV中间接受益，通过了解他们的AYA的观点，但父母需要支持来管理他们的痛苦，并与他们的AYA进行重要的对话。通过在我们已经有效的TMV干预中增加父母干预成分，我们建议父母将减少痛苦，父母和AYA将感受到更好的家庭环境，这反过来将导致治疗期间额外的显著AYA结局，而这在当前R 01中未观察到。具体目的是比较TMV与TMV+父母成分（TMV+P）对AYA及其父母结局的疗效;并使用混合方法确定父母苦恼和父母感知的家庭环境与AYA结局的关系。AYA（n = 129）和父母将被随机分配至TMV或TMV+P条件。所有AYA参与者将接受TMV干预;随机分配到TMV+P的父母将接受父母干预部分。这项研究的结果将直接影响成千上万的父母和AYA高风险癌症患者的护理，增加我们对父母/AYA需求的理解，以及对父母痛苦和积极健康因素与AYA结果关系的了解，同时直接解决父母和AYA在治疗期间的相互关联需求。

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.