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自我护理、韧性和晚期癌症患者亲属的照顾者负担:来自 eQuiPe 研究的结果。

Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study.

机构信息

Research & Development, Netherlands Comprehensive Cancer Organization (IKNL), PO box 19079, 3501 DB, Utrecht, The Netherlands.

CoRPS-Center of Research On Psychology in Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands.

出版信息

Support Care Cancer. 2021 Dec;29(12):7975-7984. doi: 10.1007/s00520-021-06365-9. Epub 2021 Jul 3.

Abstract

PURPOSE

Relatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. This study assessed the engagement in self-care and resilience in relatives of patients with advanced cancer and its association with their caregiver burden.

METHODS

This study analyzed baseline data of the eQuiPe study, a prospective longitudinal, multicenter, observational study on quality of care and life of patients with advanced cancer and their relatives in which self-care (Self-care Practices Scale), resilience (Connor-Davidson Resilience Scale), and caregiver burden (Zarit Burden Interview (ZBI)) of relatives were included. Their scores were compared with a gender- and age-matched normative population. Multivariable logistic regression analysis was performed to assess the association between self-care and resilience with caregiver burden.

RESULTS

Most of the 746 relatives were the patient's partner (78%) and 54% reported to be an informal caregiver of the patient. The median hours of caregiving a week for all relatives was 15 and 11% experienced high caregiver burden (ZBI > 20). Relatives who reported a high caregiver burden engaged less often in self-care (OR = .87) and were less resilient (OR = .76) compared to relatives with low/medium caregiver burden. Relatives with high caregiver burden were younger (OR = .96), highly educated (OR = 2.08), often reported to be an informal caregiver of the patient (OR = 2.24), and were less well informed about the importance of self-care (OR = .39).

CONCLUSION

A significant number of relatives of patients with advanced cancer experienced high caregiver burden. As more self-care and resilience were associated with lower experienced caregiver burden, creating awareness of the beneficial potential of self-care is important. Future studies should illuminate the causal relation.

TRIAL REGISTRATION NUMBER

NTR6584 (date of registration: 30 June 2017).

摘要

目的

亲属经常参与照顾晚期癌症患者,承担着沉重的负担。自我护理和韧性可能有助于提高他们的幸福感和承受负担的能力。本研究评估了晚期癌症患者亲属的自我护理和韧性参与情况,及其与照顾者负担的关系。

方法

本研究分析了 eQuiPe 研究的基线数据,这是一项前瞻性纵向、多中心、观察性研究,研究对象为晚期癌症患者及其亲属的护理质量和生活质量,其中包括亲属的自我护理(自我护理实践量表)、韧性(Connor-Davidson 韧性量表)和照顾者负担(Zarit 负担访谈(ZBI))。将他们的得分与性别和年龄匹配的正常人群进行比较。采用多变量逻辑回归分析评估自我护理和韧性与照顾者负担的关系。

结果

746 名亲属中,大多数是患者的伴侣(78%),54%的人报告是患者的非正式照顾者。所有亲属每周的平均照顾时间为 15 小时,11%的人有较高的照顾者负担(ZBI>20)。与低/中照顾者负担的亲属相比,报告高照顾者负担的亲属较少进行自我护理(OR=0.87),韧性也较低(OR=0.76)。高照顾者负担的亲属年龄较小(OR=0.96)、受教育程度较高(OR=2.08)、经常报告是患者的非正式照顾者(OR=2.24),并且对自我护理的重要性了解较少(OR=0.39)。

结论

相当数量的晚期癌症患者亲属经历了高照顾者负担。由于更多的自我护理和韧性与较低的照顾者负担有关,因此提高对自我护理有益潜力的认识很重要。未来的研究应该阐明因果关系。

临床试验注册号

NTR6584(注册日期:2017 年 6 月 30 日)。

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