临终患者家庭选择安宁疗护服务的决策过程分析

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目的 探讨临终患者及其家庭选择安宁疗护病房的原因以及相关的决策过程.方法 本研究采用定量和定性相结合的方法.2019年9月至2021年7月选取上海市6所社区卫生服务中心安宁疗护病房住院患者的146名医疗决策者,采用自行编制问卷对其进行调查.自设问卷包括决策者一般情况及家庭决策过程2个部分,共10个条目.对其中9名医疗决策者进行访谈,了解他们选择安宁疗护并做出决策的过程并采用内容分析法对访谈资料进行分析.结果 结果显示,医疗决策者的平均年龄是57.57岁.56.85%的医疗决策者为患者子女,84.93%的家庭中有其他家庭成员参与到安宁疗护的决策讨论中,仅有43.15%的家庭中患者参与相关讨论.有少数家庭的决策过程中有医生(17.81%)和护士(2.05%)的参与.选择安宁疗护病房的主要原因是患者难以被收治到其他医院(82.19%);在获知安宁疗护病房途径方面,亲友邻居(38.36%)和社会媒体(28.77%)2个途径起到了积极的作用.质性研究结果共提炼出2个主题,6个类别,分别为:选择安宁疗护病房的原因包括无法在家照顾患者,住在安宁疗护病房能减轻居家照顾的压力,无法住进二或三级医院,以及认为安宁疗护病房是适合患者的地方;选择安宁疗护病房的决策过程包括获知安宁疗护病房的途径,以及家庭讨论式的决策方式2个类别.结论 对于多数家庭而言,安宁疗护病房是临终患者家庭在经历了照顾压力和现实困难后的一个合理而平衡的选择.在以家庭讨论为主的决策方式中,仍需要提高患者的参与,让家属了解患者的心愿.如何引导临终患者家庭做出合理的医疗决策,媒体可继续发挥积极作用,而医务人员也需更积极地参与到这一决策过程中.“,”Objectives:To investigate why patients with terminal illness and their families in Shanghai choose the hospice ward and their decision-making process.Methods:This was a mixed-method study consisting of a cross-sectional survey and a descriptive quali-tative study.Medical decision-makers for patients hospitalized in hospice wards were recruited between September 2019 and July 2021.A medical decision-maker is a family member who makes medical decisions for a patient.All 146 participants completed a self-developed 10-item questionnaire that included five items about their demographic characteristics and five items about the decision-making process.The semi-structured interviews were conducted with nine participants to understand the family\'s decision-making process when they chose a hospice ward.The interviews were analyzed using qualitative content analysis.Results:The mean age of the 146 participants was 57.6 years old.Of the decision-makers,56.85% were the patients\' children.Family-dominated discussions involving other family members were the main decision-making mode (84.93%).Patient participation in the decision-making process was reported in 43.15% of families.The participation of doctors (17.81%) and nurses (2.05%) were reported in a small number of families.The most common reason for choosing the hospice ward was the inability to find any other hospital for the patients (82.19%).The most common ways to learn about the service were neighbors and friends (38.36%) and social media (28.77%).Two themes and six categories emerged from the interviews.The first theme was reasons for choosing hospice wards.The reasons included being unable to care for the patients at home,staying in a hospice ward could reduce the psychological stress for home care,being unable to be admitted into tertiary/secondary hospitals,and thinking a hospice ward was a suitable place for the family.The second theme was the decision process of choosing a hospice ward.This theme included the following two categories,i.e.,ways to learn about the hospice ward and family-discussion decision mode.Conclusion:To most families having dying patients,a hospice ward is a reasonable and balanced choice after the families experience huge care stress and practical difficulties.The participation of patients should be encouraged in the family discussion so that their wishes can be known.More efforts will be needed to guide the families with dying patients to make reasonable medical choices.Social media can be a good way to improve public awareness of hospice services in the future.Meanwhile,healthcare providers should be more involved in the decision-making process.
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