Applebaum Allison J, Farran Carol J, Marziliano Allison M, Pasternak Anna R, Breitbart William
Memorial Sloan-Kettering Cancer Center, New York, New York.
Rush University, Chicago, Illinois.
Palliat Support Care. 2014 Apr;12(2):139-48. doi: 10.1017/S1478951513000084. Epub 2013 Aug 7.
The burden experienced by informal caregivers (ICs) of patients with advanced cancer is well documented. ICs are at risk for anxiety and depression, as well as existential concerns that arise when a loved one is facing a terminal illness. Few psychosocial interventions focus on existential concerns of ICs. However, a growing body of literature indicates that finding meaning in the experience of being an IC for a person with cancer has the potential to buffer against burden. The purpose of this study was to collect preliminary descriptive data regarding caregiver burden, meaning, and psychosocial service use to inform the adaptation of a meaning-centered intervention for ICs.
Twenty-five caregivers and 32 patients completed brief, anonymous questionnaires that asked about their role as a caregiver or their perception of their loved one as a caregiver, caregiver burden, and psychosocial service use.
Caregivers and patients identified anxiety and depression as top correlates of burden experienced by caregivers, whereas guilt, issues with role/sense of identity, and self-care were additional areas of concern. The majority of caregivers were not receiving psychosocial services, although they almost unanimously reported desiring services. A greater proportion of patients than caregivers believed that an intervention designed to enhance meaning would ameliorate burden, but, nevertheless, close to three quarters of caregivers reported interest in participating in such an intervention.
These study findings provide further support for, at a minimum, engaging ICs of persons with advanced cancer in interventions that address existential issues, mental health, self-care, and service use. Such interventions are likely to improve the quality of life of both patients with cancer and their ICs.
晚期癌症患者的非正式照护者（IC）所承受的负担已有充分记录。IC有焦虑和抑郁的风险，以及当亲人面临绝症时出现的生存问题。很少有心理社会干预措施关注IC的生存问题。然而，越来越多的文献表明，在作为癌症患者的IC的经历中找到意义有可能减轻负担。本研究的目的是收集关于照护者负担、意义和心理社会服务使用的初步描述性数据，以为针对IC的以意义为中心的干预措施的调整提供信息。
25名照护者和32名患者完成了简短的匿名问卷，问卷询问了他们作为照护者的角色或他们对亲人作为照护者的看法、照护者负担以及心理社会服务的使用情况。
照护者和患者将焦虑和抑郁确定为照护者所经历负担的首要相关因素，而内疚、角色/身份感问题和自我照护是其他令人担忧的领域。大多数照护者没有接受心理社会服务，尽管他们几乎一致报告希望获得服务。认为旨在增强意义的干预措施会减轻负担的患者比例高于照护者，但尽管如此，近四分之三的照护者表示有兴趣参与这样的干预。
这些研究结果至少为让晚期癌症患者的IC参与解决生存问题、心理健康、自我照护和服务使用的干预措施提供了进一步支持。此类干预措施可能会改善癌症患者及其IC的生活质量。
