Caregivers as healthcare managers: health management activities, needs, and caregiving relationships for colorectal cancer survivors with ostomies.
Caregivers as healthcare managers: health management activities, needs, and caregiving relationships for colorectal cancer survivors with ostomies.
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DOI：
10.1007/s00520-014-2194-3
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发表时间：
2014-09
影响因子：
3.1
通讯作者：
Krouse, Robert S.
中科院分区：
文献类型：
--
作者：
McMullen, Carmit K.;Schneider, Jennifer;Altschuler, Andrea;Grant, Marcia;Hornbrook, Mark C.;Liljestrand, Petra;Krouse, Robert S.
关键词：
虽然癌症护理的负担和回报是有据可查的，但很少有研究描述癌症护理所涉及的活动。我们采用社会生态学的观点来探讨长期结直肠癌（CRC）造口幸存者的癌症护理工作。我们重点关注医疗保健管理，这里将其定义为非正式护理人员参与医疗保健相关活动的方式，如管理医疗预约和信息、获取处方和用品以及提供交通工具以获得医疗保健服务。这项人种学研究包括31对长期结直肠癌幸存者（术后50 ~ 5年）及其主要非正式照顾者。幸存者是综合医疗保健提供系统的成员。我们使用深度访谈采访了参与者，并使用人种学方法跟踪了一部分参与者。医疗记录数据确定了幸存者的癌症和病史。我们将家庭分类为医疗管理资源（高与低）和幸存者医疗保健需求（高与低）的矩阵。我们发现患者的医疗保健需求并不总是与其护理人员的管理活动相对应。当照顾者和幸存者期望或认为最佳的照顾者参与程度不同时，高需求的CRC幸存者有更多未满足的需求。这种差异在非婚姻关系中尤为明显。随着癌症幸存者年龄的增长和人数的增加，了解非正式护理人员如何支持幸存者的福祉变得越来越重要。将医疗保健管理作为护理的一个组成部分提供了一个有用的视角，可以促进未来的研究和干预措施，以支持幸存者，特别是那些因癌症治疗而留下严重后遗症的幸存者。
While the burdens and rewards of cancer caregiving are well-documented, few studies describe the activities involved in cancer caregiving. We employed a social-ecological perspective to explore the work of cancer caregiving for long-term colorectal cancer (CRC) survivors with ostomies. We focused on healthcare management, defined here as the ways in which informal caregivers participate in healthcare-related activities such as managing medical appointments and information, obtaining prescriptions and supplies, and providing transportation to obtain healthcare services. This ethnographic study included 31 dyads consisting of long-term CRC survivors (>5 years post-surgery) and their primary informal caregivers. Survivors were members of integrated healthcare delivery systems. We interviewed participants using in-depth interviews and followed a subset using ethnographic methods. Medical record data ascertained survivors’ cancer and medical history. We classified families into a matrix of healthcare management resources (high vs. low) and survivors’ healthcare needs (high vs. low). We found that patients’ healthcare needs did not always correspond to their caregivers’ management activities. CRC survivors with high needs had more unmet needs when caregivers and survivors differed in the level of caregiver involvement they desired or regarded as optimal. This discrepancy was particularly evident in non-marital relationships. As cancer survivors age and grow in number, it becomes increasingly important to understand how informal caregivers support survivors’ well-being. Framing healthcare management as a component of caregiving provides a useful perspective that could facilitate future research and interventions to support survivors, particularly those with significant sequelae from their cancer treatment.
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DOI：
10.1046/j.1532-5415.2003.51185.x
发表时间：
2003-04-01
影响因子：
6.3
作者：
Coleman, EA
通讯作者：
Coleman, EA
影响因子：
7.2
作者：
DEYO, RA;CHERKIN, DC;CIOL, MA
通讯作者：
CIOL, MA
影响因子：
2.2
作者：
Glajchen, Myra
通讯作者：
Glajchen, Myra
影响因子：
3.4
作者：
Coeling, HV;Biordi, DL;Theis, SL
通讯作者：
Theis, SL
影响因子：
9.7
作者：
Levine, Carol;Halper, Deborah;Gould, David A.
通讯作者：
Gould, David A.