Division of Health Sciences (S.Y., H.A., M.A.), Osaka University Graduate School of Medicine, Suita, Osaka, Japan.
Division of Health Sciences (S.Y., H.A., M.A.), Osaka University Graduate School of Medicine, Suita, Osaka, Japan.
J Pain Symptom Manage. 2021 Oct;62(4):796-804. doi: 10.1016/j.jpainsymman.2021.03.023. Epub 2021 Apr 10.
Terminal dyspnea in dying cancer patients is frequent and distressing, and the impact extends to their families. Families are often involved in providing care for terminal dyspnea.
This study aimed to describe various care strategies for terminal dyspnea in cancer patients hospitalized in palliative care units (PCUs), evaluate families' satisfaction with care for terminal dyspnea, and explore determinants contributing to families' satisfaction.
A nationwide, cross-sectional survey was conducted using a self-reported questionnaire among bereaved families of cancer patients who died in PCUs. The questionnaire consisted of questions on the perceptions of care offered to patients with terminal dyspnea and their families, satisfaction with care for terminal dyspnea, family-perceived intensity of terminal dyspnea, use of oxygen, and background data of patients and families.
In total, 533 participants (response rate = 54%) returned the completed questionnaires, and 231 reported that their loved one had experienced terminal dyspnea. Dedicated and compassionate care was perceived by 60%-89% of the participants as the strategy provided for patients. Care for family members was perceived by 58%-69% of the participants. Perception of dedicated and compassionate care for patients and that of care for family members were significantly associated with high satisfaction (odds ratio, 95% confidence interval: 8.64, 3.85-19.36 and 15.37, 5.00-47.25, respectively).
Dedicated and compassionate care may be the essential part of the care for terminal dyspnea. Dedicated and compassionate care for patients and care for family members have a potential of improving the care satisfaction among family caregivers.
终末期癌症患者常出现呼吸困难，且这种呼吸困难令人痛苦，其影响会波及患者家属。家属常参与终末期呼吸困难患者的护理工作。
本研究旨在描述姑息治疗病房（PCU）中终末期癌症患者呼吸困难的各种护理策略，评估家属对终末期呼吸困难护理的满意度，并探讨影响满意度的因素。
采用自我报告问卷调查的方式，对 PCU 中死亡的癌症患者的丧亲家属进行了一项全国性的横断面调查。问卷内容包括患者及其家属对终末期呼吸困难护理的看法、对终末期呼吸困难护理的满意度、家庭对终末期呼吸困难严重程度的感知、氧气使用情况以及患者和家属的背景数据。
共 533 名参与者（应答率为 54%）返回了填写完整的问卷，其中 231 名报告其亲人经历过终末期呼吸困难。60%-89%的参与者认为为患者提供了专门且富有同情心的护理。58%-69%的参与者认为为患者家属提供了护理。患者的专门且富有同情心的护理感知和对家属的护理感知与满意度显著相关（优势比，95%置信区间：8.64，3.85-19.36 和 15.37，5.00-47.25）。
专门且富有同情心的护理可能是终末期呼吸困难护理的重要组成部分。为患者提供专门且富有同情心的护理以及为家属提供护理可能会提高家属的护理满意度。
