End-of-life experiences of family caregivers of deceased patients with cancer: A nation-wide survey
End-of-life experiences of family caregivers of deceased patients with cancer: A nation-wide survey
复制标题
已故癌症患者的家庭照顾者的临终经历：一项全国范围的调查
DOI：
10.1002/pon.4504
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发表时间：
2018
期刊：
影响因子：
3.6
通讯作者：
Otani H,et al
中科院分区：
文献类型：
--
作者：
Hirooka K;Otani H,et al
目的本研究的目的是(a)描述癌症患者的家庭照顾者的临终体验，(b)描述对未成年子女谈论患者的死亡和临终，以及(c)研究家庭照顾者的经历与谈论患者的死亡和临终之间的关系。方法在全国范围内对丧偶家属照顾者进行横断面调查。共发放968份问卷给丧亲家属照顾者，共收回711份问卷。分析了53例表明患者有未成年子女的反应。进行单因素分析和主成分分析。结果通过主成分分析，将家庭照顾者的体验分为3个领域：保护儿童免受患者即将死亡的影响、对儿童缺乏关心和担心儿童的情绪反应。家庭照顾者的共同经历如下：“我想知道孩子的感受”，“我想避免让孩子感到困惑”，以及“我没有太多时间和孩子交谈或玩耍”。大约30%的家庭照顾者报告说，他们“不谈论”未成年子女的死亡和病人的临终。不谈论死亡的患者配偶和家庭照顾者往往会感到痛苦和担忧。结论大多数家庭照顾者对未成年子女的情绪反应存在担忧和恐惧；因此，临床医生需要解释当患者处于生命末期时，儿童对家庭照顾者的情绪和心理反应。
ObjectivesThe purpose of this study was (a) to describe the end‐of‐life experience of family caregivers of cancer patients, (b) to describe talking about death and dying of the patient to minor children, and (c) to examine the association of family caregivers' experiences by their characteristics and talking about death and dying of the patient.MethodsA cross‐sectional nationwide survey of bereaved family caregivers was conducted. In total, 968 questionnaires were sent to bereaved family caregivers, and 711 were completed and returned. Fifty‐three responses indicating patients had minor children were analyzed. Univariate analysis and principal component analysis were performed.ResultsFamily caregivers' experiences were divided into 3 domains by principal component analysis: protect children from the patient's imminent death, little regard for the children, and worry and concern about the children's emotional reaction. Family caregivers' common experiences were as follows: “I wanted to know how the children felt,” “I wanted to avoid making the children confused,” and “I did not have much time to talk with and/or play with the children.” About 30% of family caregivers reported that they “did not talk” about death and dying of patients to minor children. Spouses of patients and family caregivers who did not talk about death tended to experience distress and worry.ConclusionsMost family caregivers experienced worry and fear regarding minor children's emotional reaction; therefore, clinicians need to explain children's emotional and psychological reactions to family caregivers when a patient is at the end‐of‐life.