Informal caregiver burden in advanced cancer: Economic and health outcomes

晚期癌症的非正式护理人员负担：经济和健康结果

• 批准号: 9329383
• 负责人: LAURA A. SIMINOFF
• 金额: $ 76.83万
• 依托单位: TEMPLE UNIV OF THE COMMONWEALTH
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-01 至 2020-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9329383
• 关键词: Adult; Advanced Malignant Neoplasm; Affect; Cancer Family; Cancer Patient; Caregiver Burden; Caregivers; Caring; Cessation of life; Cohort Studies; Complex; Continuity of Patient Care; Data; Day Care; Disease; Distress; Economics; Emotional; Employment; Enteral Feeding; Financial Support; Goals; Health; Health Care Costs; Health system; Home environment; Hour; Income; Instruction; Insurance Carriers; Interview; Length of Stay; Malignant Neoplasms; Mental Health; Methodology; Outcome; Palliative Care; Patient Care; Persons; Population; Quality of life; Research; Resources; Self Care; Services; Shoulder; Site; Solid Neoplasm; Stress; Structure; Surveys; System; Time; Uninsured Medical Expense; United States; Ventilator; cancer care; caregiving; cost; diaries; economic cost; economic outcome; end of life; experience; health care service utilization; health economics; informal caregiver; life-limiting cancer; longitudinal design; physical conditioning; prospective; public health relevance; skills; social

 DESCRIPTION (provided by applicant): As health systems and insurers emphasize increased system efficiencies and reduced hospital days, the responsibility of care for cancer patients is shifting to informal caregivers (CGs) in the home. An estimated 4 million CGs spend an average of 8 hours per day providing care for adults with cancer in the United States. Caregiving includes emotional support, financial assistance, and personal care, as well as coordination of services and skilled nursing6-10. Negative effects include emotional, social and financial disruptions and lessened quality of life and intensify as a cancer patient approaches death. Current research does not fully describe the extensive range of care provided by CGs, how care changes as disease progresses, and whether and when care needs exceed CGs' skills and emotional and financial resources. High subjective burden, such as stress and distress, has been documented for CGs. However, little is known about CGs' objective burden in this population, specifically number and hours of CG tasks and scope and intensity of tasks. This proposed study would be the first to comprehensively examine the lived experiences of CGs of PTs with advanced solid tumor cancers. To accomplish this, the multi-site cohort study will employ a prospective, longitudinal design that will follow CGs of PTs with life limiting cancer for up to 12 months or until 1 month after PT death. Data will be collected bi-weekly and in-person from CGs in their homes using qualitative interviews, quantitative surveys, CG diaries, and structured observation. The overall goal of this study is to understand CG objective burden, a key and understudied contributor to overall CG burden and how it affects both health and economic outcomes of CGs and to identify potentially modifiable factors impacting CG overall burden.

 描述（由申请人提供）：随着卫生系统和保险公司强调提高系统效率和减少住院天数，癌症患者的护理责任正在转移到家庭中的非正式护理人员 (CG) 身上。估计有 400 万非正式护理人员平均花费 8 个小时。在美国，每天为患有癌症的成年人提供护理的时间 护理包括情感支持、经济援助和个人护理，以及服务协调和熟练护理 负面影响包括情感、社会和经济。当前的研究没有充分描述 CG 提供的广泛护理、护理如何随着疾病进展而变化，以及护理需求是否以及何时超出 CG 的技能和情感和能力。已记录了 CG 的高主观负担，例如压力和痛苦，但是，对于 CG 在该人群中的客观负担，特别是 CG 任务的数量和时间以及任务的范围和强度，我们知之甚少。将是第一个为了全面检查患有晚期实体瘤癌症的 PT 的生活经历，为了实现这一目标，多中心队列研究将采用前瞻性、纵向设计，跟踪患有限制生命的癌症的 PT 的 CG。 PT 死亡后最多 12 个月或直至 1 个月，将通过定性访谈、定量调查、CG 日记和结构化观察，每两周亲自从 CG 收集数据。了解 CG 客观负担，这是总体 CG 负担的一个关键且未被充分研究的因素，以及它如何影响 CG 的健康和经济成果，并确定影响 CG 总体负担的潜在可修改因素。