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

癌症姑息治疗：AYA 家长沟通和恢复力的音乐视频

• 批准号: 8517051
• 负责人: JOAN Ellen HAASE
• 金额: $ 56.09万
• 依托单位: INDIANA UNIV-PURDUE UNIV AT INDIANAPOLIS
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-08-17 至 2015-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8517051
• 关键词: Acute; Address; Adolescent; Age; Anxiety; Behavior; Cancer Survivor; Caring; Cessation of life; Communication; Coupled; Data; Disease-Free Survival; Distal; Distress; Emotional; Environment; Family; Future; Goals; Health; High-Risk Cancer; Institute of Medicine (U.S.); Intervention; Intervention Studies; Knowledge; Lead; Life; Malignant Neoplasms; Methods; Modeling; Moods; Music; Outcome; Palliative Care; Parents; Participant; Personal Satisfaction; Phase; Positioning Attribute; Quality of life; Randomized; Research; Research Priority; Risk Factors; Risk-Taking; Staging; Stem cell transplant; Stress; Symptoms; Therapeutic; Transplantation; Uncertainty; United States National Institutes of Health; base; cancer palliative treatment; cancer therapy; chemotherapy; clinical practice; cohesion; comparative efficacy; coping; experience; high risk; improved; innovation; insight; post intervention; resilience; social; social integration; young adult

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.

描述（由申请人提供）：正在接受高风险癌症治疗的青少年/年轻人 (AYA) 及其父母会经历高度痛苦，包括症状痛苦以及对癌症、治疗和未来的不确定性。父母的痛苦会加剧 AYA 的痛苦，并使父母情绪低落。父母和 AYA 的痛苦也阻碍了 AYA 与父母就癌症相关问题进行沟通，包括姑息治疗目标、治疗决定和死亡的可能性。拟议的研究涉及 NIH、医学研究所和国家姑息治疗研究中心与 AYA 及其父母的情感、精神和实际需求相关的姑息治疗研究重点。这项研究建立在我们当前试验 (NIH 5R01NR008583) 的重要发现的基础上，该试验确定了治疗性音乐视频 (TMV) 干预的功效，可以改善接受干细胞移植的 AYA 的积极健康结果；定性研究结果表明，家长通过深入了解 AYA 的观点，从 TMV 中获得间接收益，但家长需要支持来管理他们的痛苦并与 AYA 开展重要对话。通过在我们已经有效的 TMV 干预中添加家长干预成分，我们建议家长的痛苦会减少，家长和 AYA 将感知到更好的家庭环境，这反过来又会导致治疗期间出现当前 R01 中未观察到的额外显着 AYA 结局。具体目标是比较 TMV 与 TMV 加父母成分 (TMV+P) 对 AYA 及其父母结果的功效；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 结果之间的关系。 AYA (n = 129) 和家长将被随机分配到 TMV 或 TMV+P 条件。所有 AYA 参与者都将接受 TMV 干预；随机分配至 TMV+P 的家长将接受家长干预部分。该研究的结果将通过增加我们对父母/AYA需求的了解以及对父母痛苦和积极健康因素与AYA结果之间关系的了解，同时直接解决治疗期间父母和AYA的相互关联的需求，从而直接影响对数千名患有高风险癌症的父母和AYA的护理。