Sharpe Louise, Butow Phyllis, Smith Claire, McConnell David, Clarke Stephen
Clinical Psychology Unit F12, School of Psychology, The University of Sydney, NSW Australia.
Psychooncology. 2005 Feb;14(2):102-14. doi: 10.1002/pon.825.
Caregiver burden is an increasing problem with patients surviving longer and more care tasks falling to informal caregivers. While research has identified patient and caregiver variables associated with caregiver burden, less research has focused on aspects of the care environment. The present study investigated the available support and unmet needs of 57 patients with advanced cancer, 45 of their carers and 40 of their health professionals. Carers and patients consistently identified higher levels of available support for the patient than health care professionals, with carers identifying higher levels of support than patients. Carers also identified more patient unmet needs than health care professionals, who in turn identified more than patients. Surprisingly, available support did not increase over 6 months and there was a tendency for unmet needs to decrease over time. Low available support, high unmet needs and a larger discrepancy between carer and patients' reports of patients' unmet need predicted negative aspects of caregiver burden. These results suggest that health care professionals underestimate available support to patients and both patients and health care professionals underestimate patients' unmet needs in comparison to carers. Carers' reports of patients' unmet needs are important to consider as they were associated with high levels of caregiver burden, including poorer caregiver health. Health care professionals should encourage opportunities for carers to discuss their views of the ongoing needs of patients with advanced cancer.
随着患者生存期延长以及更多护理任务落到非正式护理人员身上,护理人员负担成为一个日益严重的问题。虽然研究已确定了与护理人员负担相关的患者和护理人员变量,但较少有研究关注护理环境方面。本研究调查了57名晚期癌症患者、45名他们的护理人员以及40名他们的医护人员可获得的支持和未满足的需求。护理人员和患者一致认为患者可获得的支持水平高于医护人员,且护理人员认为的支持水平高于患者。护理人员还比医护人员发现更多患者未满足的需求,而医护人员发现的又比患者多。令人惊讶的是,可获得的支持在6个月内并未增加,且未满足的需求有随时间减少的趋势。可获得的支持水平低、未满足的需求高以及护理人员与患者报告的患者未满足需求之间的较大差异预示着护理人员负担的消极方面。这些结果表明,与护理人员相比,医护人员低估了患者可获得的支持,且患者和医护人员都低估了患者未满足的需求。护理人员报告的患者未满足需求很重要,因为它们与高水平的护理人员负担相关,包括护理人员较差的健康状况。医护人员应鼓励创造机会让护理人员讨论他们对晚期癌症患者持续需求的看法。