University of Iowa, Iowa City, IA, USA.
Psychooncology. 2011 Jan;20(1):44-52. doi: 10.1002/pon.1703.
A great deal of clinical cancer care is delivered in the home by informal caregivers (e.g. family, friends), who are often untrained. Caregivers' context varies widely, with many providing care despite low levels of resources and high levels of additional demands.
Changes in health care have shifted much cancer care to the home, with limited data to inform this transition. We studied the characteristics, care tasks, and needs of informal caregivers of cancer patients.
Caregivers of seven geographically and institutionally defined cohorts of newly diagnosed colorectal and lung cancer patients completed self-administered questionnaires (n = 677). We combined this information with patient survey and chart abstraction data and focused on caregivers who reported providing, unpaid, at least 50% of the patient's informal cancer care.
Over half of caregivers (55%) cared for a patient with metastatic disease, severe comorbidity, or undergoing current treatment. Besides assisting with activities of daily living, caregivers provided cancer-specific care such as watching for treatment side effects (68%), helping manage pain, nausea or fatigue (47%), administering medicine (34%), deciding whether to call a doctor (30%), deciding whether medicine was needed (29%), and changing bandages (19%). However, half of caregivers reported not getting training perceived as necessary. In addition, 49% of caregivers worked for pay, 21% reported poor or fair health, and 21% provided unpaid care for other individuals. One in four reported low confidence in the quality of the care they provided.
Much assistance for cancer patients is delivered in the home by informal caregivers, often without desired training, with a significant minority having limited resources and high additional demands. Future research should explore the potentially high yield of addressing caregiver needs in improving quality of cancer care and both survivors' and caregivers' outcomes.
大量的临床癌症护理是由非专业护理人员（例如，家人、朋友）在家庭中提供的，他们通常未经培训。护理人员的背景差异很大，许多人在资源有限、额外需求高的情况下提供护理。
医疗保健的变化已经将许多癌症护理转移到家庭中，但缺乏数据来为这一转变提供信息。我们研究了癌症患者的非专业护理人员的特征、护理任务和需求。
七个地理和机构定义的新诊断结直肠癌和肺癌患者队列的护理人员完成了自我管理问卷（n = 677）。我们将这些信息与患者调查和图表摘录数据相结合，并重点关注那些报告提供至少 50%的患者非专业癌症护理的护理人员。
超过一半的护理人员（55%）照顾患有转移性疾病、严重合并症或正在接受当前治疗的患者。除了协助日常生活活动外，护理人员还提供癌症特异性护理，例如观察治疗副作用（68%）、帮助管理疼痛、恶心或疲劳（47%）、给药（34%）、决定是否看医生（30%）、决定是否需要药物（29%）以及更换绷带（19%）。然而，有一半的护理人员报告没有接受他们认为必要的培训。此外，49%的护理人员有薪工作，21%的护理人员报告健康状况不佳或一般，21%的护理人员为其他个人提供无偿护理。四分之一的人报告对他们提供的护理质量缺乏信心。
大量的癌症患者在家庭中由非专业护理人员提供帮助，他们通常没有接受所需的培训，其中相当一部分人的资源有限，额外的需求很高。未来的研究应该探索满足护理人员需求在提高癌症护理质量和患者及其护理人员的结果方面的潜在高收益。
