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2
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本文引用的文献

1
It Takes a Village: Interprofessional Collaboration in Cardiology.
J Card Fail. 2017 Jul;23(7):570-573. doi: 10.1016/j.cardfail.2017.05.011. Epub 2017 May 19.
2
Psychometric Validation of the Heart Failure Caregiver Questionnaire (HF-CQ).心力衰竭患者照顾者问卷(HF-CQ)的心理测量学验证。
Patient. 2017 Oct;10(5):579-592. doi: 10.1007/s40271-017-0228-x.
3
Pulling together and pulling apart: influences of convergence and divergence on distributed healthcare teams.凝聚与分离:趋同和分歧对分布式医疗团队的影响
Adv Health Sci Educ Theory Pract. 2017 Dec;22(5):1085-1099. doi: 10.1007/s10459-016-9741-2. Epub 2017 Jan 23.
4
'Who is on your health-care team?' Asking individuals with heart failure about care team membership and roles.“谁在你的医疗团队中?”询问心力衰竭患者关于护理团队的成员和职责。
Health Expect. 2017 Apr;20(2):198-210. doi: 10.1111/hex.12447. Epub 2016 Feb 29.
5
Adaptive practices in heart failure care teams: implications for patient-centered care in the context of complexity.心力衰竭护理团队中的适应性实践:在复杂背景下对以患者为中心的护理的影响。
J Multidiscip Healthc. 2015 Aug 19;8:365-76. doi: 10.2147/JMDH.S85817. eCollection 2015.
6
A qualitative study of the current state of heart failure community care in Canada: what can we learn for the future?加拿大心力衰竭社区护理现状的定性研究:我们能从中学到什么以展望未来?
BMC Health Serv Res. 2015 Jul 28;15:290. doi: 10.1186/s12913-015-0955-4.
7
What matters to patients with heart failure? The influence of non-health-related goals on patient adherence to self-care management.心力衰竭患者关心什么?非健康相关目标对患者自我护理管理依从性的影响。
Patient Educ Couns. 2015 Aug;98(8):927-34. doi: 10.1016/j.pec.2015.04.011. Epub 2015 Apr 27.
8
Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions.隐性关怀,隐性照料者?探索长期病患照料者的经历。
Health Soc Care Community. 2016 Mar;24(2):203-13. doi: 10.1111/hsc.12207. Epub 2015 Feb 23.
9
Burden of caring: risks and consequences imposed on caregivers of those living and dying with advanced heart failure.照护负担:晚期心力衰竭患者的照护者所面临的风险及后果
Curr Opin Support Palliat Care. 2015 Mar;9(1):26-30. doi: 10.1097/SPC.0000000000000111.
10
Understanding the epidemic of heart failure: past, present, and future.了解心力衰竭的流行情况:过去、现在和未来。
Curr Heart Fail Rep. 2014 Dec;11(4):404-15. doi: 10.1007/s11897-014-0220-x.

心力衰竭患者及其患有慢性病的伴侣:多维度时间中的相互依存关系。

Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time.

作者信息

Nimmon Laura, Bates Joanna, Kimel Gil, Lingard Lorelei

机构信息

Centre for Health Education Scholarship.

Department of Occupational Science and Occupational Therapy.

出版信息

J Multidiscip Healthc. 2018 Mar 15;11:175-186. doi: 10.2147/JMDH.S146938. eCollection 2018.

DOI:10.2147/JMDH.S146938
PMID:29588596
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5858542/
Abstract

BACKGROUND

Informal caregivers play a vital role in supporting patients with heart failure (HF). However, when both the HF patient and their long-term partner suffer from chronic illness, they may equally suffer from diminished quality of life and poor health outcomes. With the focus on this specific couple group as a dimension of the HF health care team, we explored this neglected component of supportive care.

MATERIALS AND METHODS

From a large-scale Canadian multisite study, we analyzed the interview data of 13 HF patient-partner couples (26 participants). The sample consisted of patients with advanced HF and their long-term, live-in partners who also suffer from chronic illness.

RESULTS

The analysis highlighted the profound enmeshment of the couples. The couples' interdependence was exemplified in the ways they synchronized their experience in shared dimensions of time and adapted their day-to-day routines to accommodate each other's changing health status. Particularly significant was when both individuals were too ill to perform caregiving tasks, which resulted in the couples being in a highly fragile state.

CONCLUSION

We conclude that the salience of this couple group's oscillating health needs and their severe vulnerabilities need to be appreciated when designing and delivering HF team-based care.

摘要

背景

非正式护理人员在支持心力衰竭(HF)患者方面发挥着至关重要的作用。然而,当HF患者及其长期伴侣都患有慢性病时,他们的生活质量可能同样会下降,健康状况也会不佳。作为HF医疗团队的一个维度,我们聚焦于这一特定的夫妻群体,探索了支持性护理中这一被忽视的组成部分。

材料与方法

从一项大规模的加拿大多地点研究中,我们分析了13对HF患者-伴侣夫妻(26名参与者)的访谈数据。样本包括晚期HF患者及其同样患有慢性病的长期同居伴侣。

结果

分析突出了夫妻之间深刻的相互交织。夫妻之间的相互依赖体现在他们在时间的共同维度上同步经历,并调整日常惯例以适应彼此不断变化的健康状况。特别重要的是,当双方都病得无法承担护理任务时,夫妻双方就会处于高度脆弱的状态。

结论

我们得出结论,在设计和提供基于HF团队的护理时,需要认识到这一夫妻群体不断变化的健康需求的重要性及其严重的脆弱性。