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Re:【文摘发布】临终关怀常与全职工作联系在一起

RESOURCE: CA Cancer J Clin 2007; 57:128-129
© 2007 American Cancer Society
来源:医师肿瘤杂志.2007; 57:128-129
© 2007 美国癌症协会
TITLE: END-OF-LIFE CAREGIVING OFTEN LIKE A FULL-TIME JOB
题目:临终关怀常与全职工作联系在一起
Informal family caregivers of dying patients should be recognized as important contributors to medical care, a new study says.
据一项最新研究称,非正规的临终关怀者对医疗保健有重要贡献。
Caring for a loved one at the end of life can require as much time as a full-time job, according to a recent study. This intense level of caregiver involvement points to the importance of incorporating such caregivers into the health care plan for dying patients, according to researchers from the Johns Hopkins Bloomberg School of Public Health.
这项研究认为,对临终亲属的护理要花费与一项全职工作一样多的时间。Johns Hopkins Bloomberg公共卫生学院的研究者认为,要想具有高水平的临终护理,就需要认识到将这些临终护理者纳入公共卫生计划的重要性。
"In three-quarters of the cases of disabled older adults who die, there is a family member involved and typically providing high levels of assistance," observed lead researcher Jennifer L. Wolff, PhD, Assistant Professor of Health Policy and Management. "I think our medical system needs to better recognize and support family members' important contributions to patient care."
“在3/4死于残疾的老人中,总要有一名家人为其提供高质量的护理,”卫生管理和政策研究员-助理教授Jennifer L. Wolff博士说.“我认为我们的卫生系统需要更好的认识到家庭成员对病人护理的重要性并给以更有力的支持。
Wolff and her colleagues analyzed data from the 1999 National Long-Term Care Survey and its Informal Caregivers Survey. Their findings were published in the Archives of Internal Medicine (2007;167:40–46).
Wolff和她的同事分析了1999年来的国家长期护理调查报告及相关的非正式护理报告。他们的结果发表在《美国内科杂志》(2007;167:40–46).
The study included 1,149 primary informal caregivers, mostly spouses (41.5%) and children (39%), of people with severe chronic disabilities who needed assistance with activities of daily living (bathing, dressing, eating, toileting, etc.), as well as household tasks (shopping, laundry, cooking, money management, etc.). The caregivers were stratified according to whether the person they were caring for died within the following 12 months or not. Although the study did not stratify care recipients according to disease, the cohort did include cancer patients, who were disproportionately represented in the group of patients who died, Wolff said.
这项研究包括了1149名非正式护理者,大部分是病人配偶(41.5%)和子女(39%), 这些病人均患有严重的慢性疾病,日常生活(洗澡、穿衣、吃饭、大小便等)和家务(购物、洗衣、做饭、财物管理等)需要别人帮助。根据被护理者是否于死于护理开始后12月,护理人员被分为不同的等级。Wolff 说,由于被护理者中包括癌症患者,这些病例不能合适地代表死亡病人的结构比例,因此此研究没有将被护理者按疾病进行分类。
Caregivers of a person who died within 12 months reported spending a mean of 43 hours per week helping their loved one. The vast majority (84.4%) provided daily assistance. End-of-life caregivers commonly reported problems such as interrupted sleep, providing care when they themselves did not feel well, and worry over leaving their ill loved one alone. Compared with caregivers of patients who survived, bereaved caregivers also reported more emotional (28.9% versus 14.6%, P < 0.001) and physical strains (18.4% versus 10%, P < 0.05). Yet less than 5% of caregivers reported using services like support groups or respite care to help ease the caregiving burden.
对于死于24周的被护理者,临终关怀者每周平均有43小时用于照顾他们的亲属。其中绝大多数 (84.4%)是提供一些日常生活帮助。临终关怀者经常遇到这样的问题,比如睡眠不连续、护理时本人身体欠佳、担心置生病的亲属于不顾。于亲属还健在的护理者相比,他们存在更多精神(28.9% versus 14.6%, P < 0.001)和生理(18.4% versus 10%, P < 0.05)问题。然而他们中仅有不到5%通过专业护理组织或临终关怀组织的服务来减轻自己的负担。
Experts in caregiving say it's no surprise that caring for a dying loved one takes so much time, particularly if that person is dying of cancer. Cancer caregiving is most intense when a patient is first being treated and at the end of life, said Youngmee Kim, PhD, Director of Family Studies at the American Cancer Society (ACS). Family members are the primary source of support for cancer patients, and the tasks required of caregivers can be very complicated because cancer typically involves an acute phase that requires intensive involvement of family caregivers with little advance notice and training.
专家指出照顾临终亲属要花费如此大量的时间并不奇怪,特别是对于那些身患癌症的亲属。美国癌症协会(ACS)家庭医学主任Youngmee Kim博士说,当癌症亲属在首次治疗和临终时,护理者是最辛苦的。家庭成员是癌症患者主要的帮助者,由于癌症具有典型的加速期,这就需要这些未经培训的护理者在毫无预兆的情况下进行特别护理,因此他们要做的工作非常复杂繁琐。
It's also no surprise that caregivers didn't take more advantage of services intended to help them, said Greta Greer, MSW, ACS Director of Survivor Programs. It can be difficult and time consuming for caregivers to correctly identify, and then locate, the services their loved ones need; there are few resources, even educational materials, geared to help caregivers learn what they need to know, she said. Many would benefit from the services of a case manager or oncology social worker who could assess the needs of their loved one to determine what services should be provided, along with cost and coverage options.
ACS遗属保障项目主任Greta Greer MSW说,临终护理者不愿意获得专业机构的帮助也并不令人感到吃惊。护理者为了能确定和找到亲属需要的服务存在很多困难,而且要花费大量时间;她说,可以为临终关怀者提供学习的教育资源太少。如果管理者或肿瘤社会服务员能够对其亲属所需服务(包括费用支出和保险选择)进行评估的话,那么许多人将从中受益。
"Informal caregivers don't know what questions to ask or where to go for information," she explained. "They need help with communication skills, information-seeking skills, and self-advocacy or negotiating skills. And they need emotional support to ensure they understand the importance of self-care as a caregiver. Right now the system isn't set up to provide this as a matter of routine; it's hit or miss at best."
“非正规临终护理人员不知道该问什么问题或者去哪里获得信息,”她解释说.“他们需要在交流技能、获取信息的技能、自我倡议或谈判技能方面得到帮助。而且他们需要情感上的支持,从而让他们知道作为一名临终护理人员自身护理的重要性。目前还没有建立起可提供此类常规事务服务的体制;充其量还是无计划的、无目的的。
Physicians and other professionals on the cancer care team can be valuable sources of this type of information, said Kim. Other caregivers can also help, said Greer, who directs the ACS Cancer Survivors Network (CSN), an online community for cancer survivors, caregivers, and others affected by cancer.
Kim说,癌症护理方面的医生和其它专业人员是提供此类信息的重要来源。ACS癌症幸存者网站(一个由癌症幸存者、护理者和其它与癌症有关的人员组成的在线团体)负责人(CSN)Greer说,其它护理者也可以提供帮助。
"A lot of people join CSN to find other people who have been there for that very reason—to get that ‘What do I do?’ question answered and get practical tips about what helped them," she noted.
她解释说“加入CSN的人们就是为了为其他人解答问题,而后者经常提出譬如我该做些什么或我需要具备怎样的技能之类的问题。”
Although end-of-life caregivers reported more challenges and burdens than caregivers of people who were not dying, they were no less likely to report emotional rewards from their caregiving duties, Wolff and her colleagues report. Around 70% of end-of-life caregivers agreed or strongly agreed that caregiving "makes me feel good about myself" and "enables me to appreciate life more."
Wolff和她的同事认为,尽管临终关怀者与普通护理者相比要面对更多的挑战和负担,但他们可以从这项义务中得到感情上的回报。大约70%的临终关怀者同意或非常同意下面的观点:“从事临终护理使我对自己感觉良好”以及“是我能够更好地理解生活”。

编译后:1368字
一项有关临终关怀的报道发表在2007年第57期的《医师肿瘤杂志》上。据一项最新研究称,非正规的临终关怀者对医疗保健有重要贡献。这项研究认为,对临终病人的护理要花费与一项全职工作一样多的时间。Johns Hopkins Bloomberg公共卫生学院的研究者认为,要想具有高水平的临终护理,就需要认识到将这些临终护理者纳入公共卫生计划的重要性。“在3/4死于残疾的老人中,总要有一名家人为其提供高质量的护理,”卫生管理和政策研究员-助理教授Jennifer L. Wolff博士说.“我认为我们的卫生系统需要更好的认识到家庭成员对病人护理的重要性并给以更有力的支持。Wolff和她的同事分析了1999年来的国家长期护理调查报告及相关的非正式护理报告。他们的结果发表在《美国内科杂志》(2007;167:40–46).这项研究包括了1149名非正式护理者,大部分是病人配偶(41.5%)和子女(39%), 这些病人均患有严重的慢性疾病,日常生活(洗澡、穿衣、吃饭、大小便等)和家务(购物、洗衣、做饭、财物管理等)需要别人帮助。根据被护理者是否于死于护理开始后12月,护理人员被分为不同的等级。Wolff 说,由于被护理者中包括癌症患者,这些病例不能合适地代表死亡病人的结构比例,因此此研究没有将被护理者按疾病进行分类。对于死于24周的被护理者,临终关怀者每周平均有43小时用于照顾他们的亲属。其中绝大多数 (84.4%)是提供一些日常生活帮助。临终关怀者
经常遇到这样的问题,比如睡眠不连续、护理时本人身体欠佳、担心置生病的亲属于不顾。于亲属还健在的护理者相比,他们存在更多精神(28.9% versus 14.6%, P < 0.001)和生理(18.4% versus 10%, P < 0.05)问题。然而他们中仅有不到5%通过专业护理组织或临终关怀组织的服务来减轻自己的负担。专家指出照顾临终亲属要花费如此大量的时间并不奇怪,特别是对于那些身患癌症的亲属。美国癌症协会(ACS)家庭医学主任Youngmee Kim博士说,当癌症亲属在首次治疗和临终时,护理者是最辛苦的。家庭成员是癌症患者主要的帮助者,由于癌症具有典型的加速期,这就需要这些未经培训的护理者在毫无预兆的情况下进行特别护理,因此他们要做的工作非常复杂繁琐。ACS遗属保障项目主任Greta Greer MSW说,临终护理者不愿意获得专业机构的帮助也并不令人感到吃惊。护理者为了能确定和找到亲属需要的服务存在很多困难,而且要花费大量时间;她说,可以为临终关怀者提供学习的教育资源太少。如果管理者或肿瘤社会服务员能够对其亲属所需服务(包括费用支出和保险选择)进行评估的话,那么许多人将从中受益。“非正规临终护理人员不知道该问什么问题或者去哪里获得信息,”她解释说.“他们需要在交流技能、获取信息的技能、自我倡议或谈判技能方面得到帮助。而且他们需要情感上的支持,从而让他们知道作为一名临终护理人员自身护理的重要性。目前还没有建立起可提供此类常规事务服务的体制;充其量还是无计划的、无目的的。Kim说,癌症护理方面的医生和其它专业人员是提供此类信息的重要来源。ACS癌症幸存者网站(一个由癌症幸存者、护理者和其它与癌症有关的人员组成的在线团体)负责人(CSN)Greer说,其它护理者也可以提供帮助。她解释说“加入CSN的人们就是为了为其他人解答问题,而后者经常提出譬如我该做些什么或我需要具备怎样的技能之类的问题。”Wolff和她的同事认为,尽管临终关怀者与普通护理者相比要面对更多的挑战和负担,但他们可以从这项义务中得到感情上的回报。大约70%的临终关怀者同意或非常同意下面的观点:“从事临终护理使我对自己感觉良好”以及“是我能够更好地理解生活”。

注:此文内容很长,有些句子和词汇不是很好翻译,我现在头都大了,请各位战友多多指教!
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