Yokohama-shi Kotobuki-cho Kenko Fukushi Koryu Center Clinic (A.S.), Kanagawa, Japan.
Kamakura Family Clinic (A.O.), Kanagawa, Japan; Department of Health Data Science (A.O.), Yokohama City University, Kanagawa, Japan.
J Pain Symptom Manage. 2023 Mar;65(3):e207-e217. doi: 10.1016/j.jpainsymman.2022.10.016. Epub 2022 Nov 9.
The perception of being a burden to others is a significant concern for people with life-threatening illness. It is unclear what underpins the concept of "self-perceived burden".
To appraise and integrate primary evidence underpinning the concept of self-perceived burden (SPB) with respect to their informal caregivers among adult patients with life-threatening illness.
This is a systematic review and a thematic synthesis of qualitative primary data. MEDLINE, Embase, PsycINFO, CINAHL, and Web of Science were searched in September 2021, supplemented by hand searching of textbooks and web search engines, peer-review journals, and contact with experts. Qualitative studies were included if they provided primary data of adult patients' (with life-limiting illness) SPB toward their informal caregivers. Studies were appraised using the Critical Appraisal Skills Programme checklist.
Nine studies were included, reporting on 219 patients who mostly had advanced life-threatening illness and needed physical assistance for daily activities. SPB is a highly subjective perception contrasting self and/or informal caregivers in the past, present, and future. Patients develop SPB feeling uncertain about caregivers' perceptions and increasing future burden. SPB interacts with other factors of surrounding complex balances (such as care needs, reality, and identity) which would change over time, and patients' reactions to SPB at the sacrifice of their wishes may conversely increase the total suffering.
SPB is not a static perception but a fluctuating and complex 'process' based on uncertainty. More diverse understandings and following interventions to achieve a better balance of care should be sought.
对于患有危及生命疾病的人来说，被他人视为负担是一个严重的问题。目前尚不清楚“自我感知负担”这一概念的基础是什么。
评估并整合有关危及生命的成年患者对其非正式照顾者自我感知负担（SPB）的概念的主要证据。
这是一项对定性原始数据进行系统评价和主题综合的研究。2021 年 9 月，我们检索了 MEDLINE、Embase、PsycINFO、CINAHL 和 Web of Science，并补充了教科书和网络搜索引擎、同行评议期刊以及与专家的联系。如果研究提供了成年患者（患有绝症）对其非正式照顾者的 SPB 的主要数据，则纳入定性研究。使用批判性评估技能计划清单对研究进行评估。
共纳入 9 项研究，报告了 219 名患者的情况，这些患者大多患有晚期危及生命的疾病，需要他人协助进行日常活动。SPB 是一种非常主观的感知，与过去、现在和未来的自我和/或非正式照顾者形成对比。患者产生 SPB 的原因是不确定照顾者的看法和未来的负担增加。SPB 与其他周围复杂平衡因素（如护理需求、现实和身份）相互作用，这些因素会随时间而变化，而患者为了牺牲自己的意愿而对 SPB 的反应可能反而会增加总痛苦。
SPB 不是一种静态的感知，而是一种基于不确定性的波动和复杂的“过程”。应该寻求更广泛的理解和后续干预措施，以实现更好的护理平衡。
