Department of System Management in Nursing, Graduate School of Health Care Sciences, Tokyo Medical and Dental University, Tokyo, Japan.
Palliative Care Team, Department of Palliative and Supportive Care, National Kyushu Cancer Center, Fukuoka, Japan.
Psychooncology. 2018 Jan;27(1):272-278. doi: 10.1002/pon.4504. Epub 2017 Aug 15.
The 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.
A 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.
Family 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.
Most 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.
本研究旨在：(a)描述癌症患者家属照顾者的临终体验，(b)描述向未成年子女谈论患者的死亡，以及(c)探讨家属照顾者的经历与其特征和向患者谈论死亡之间的关系。
对丧亲的家庭照顾者进行了一项全国性的横断面调查。共向丧亲的家庭照顾者发送了 968 份问卷，其中 711 份完成并返回。对 53 份表明患者有未成年子女的答卷进行了分析。进行了单变量分析和主成分分析。
主成分分析将家庭照顾者的经历分为 3 个领域：保护孩子免受患者即将到来的死亡影响、对孩子关注甚少、以及担心和关注孩子的情绪反应。家庭照顾者的常见经历包括：“我想知道孩子的感受”、“我想避免让孩子感到困惑”以及“我没有太多时间与孩子交谈和/或玩耍”。约 30%的家庭照顾者表示他们“没有谈论”患者的死亡。患者的配偶和没有谈论死亡的照顾者往往会感到痛苦和担忧。
大多数家庭照顾者对未成年子女的情绪反应感到担忧和恐惧；因此，当患者临终时，临床医生需要向家庭照顾者解释孩子的情绪和心理反应。
