• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

“你的整个人生,你的整个世界,都改变了”:类风湿关节炎患者伴侣的生活体验。

'Your whole life, your whole world, it changes': partners' experiences of living with rheumatoid arthritis.

作者信息

Matheson L, Harcourt D, Hewlett S

机构信息

Centre for Appearance Research, Faculty of Health and Life Sciences, University of the West of England, Bristol, BS16 1 QY, UK.

出版信息

Musculoskeletal Care. 2010 Mar;8(1):46-54. doi: 10.1002/msc.165.

DOI:10.1002/msc.165
PMID:20077577
Abstract

OBJECTIVES

Research suggests that rheumatoid arthritis (RA) can have a negative psychosocial impact on partners, as well as patients. However, until now there has been very little in-depth qualitative research in this area. The aim of this study was to explore the experiences of partners of people with RA.

METHODS

Semi-structured interviews were conducted with a heterogeneous sample of eight partners of people with RA (six men, two women, age range 48-73 years). Transcripts were analysed thematically.

RESULTS

Five overarching themes emerged: psychological burden in partners was substantial, as they experienced frustration and distress at watching their partner suffer and tried to protect their spouse from emotional and physical distress. 'It's a restricted life': partners reported having to cut back on previously enjoyable shared activities and had difficulty making future plans. Adjusting lives: partners had to make considerable adjustments to many aspects of their lives, and had adopted practical and psychological ways to cope. 'It's a joint approach': many partners discussed adopting a joint approach to managing the RA. Met and unmet support needs varied considerably, and many partners felt that a joint approach to treatment taken by health professionals is needed, which involves and recognizes their role.

CONCLUSIONS

Partners of people with RA are vital to the patients' disease management, but the data show that many carry a substantial psychosocial burden. Healthcare professionals should be aware of this, so that couples coping with RA can be better supported.

摘要

目的

研究表明,类风湿性关节炎(RA)会对患者及其伴侣产生负面的社会心理影响。然而,迄今为止,该领域几乎没有深入的定性研究。本研究的目的是探讨类风湿性关节炎患者伴侣的经历。

方法

对8名类风湿性关节炎患者的伴侣(6名男性,2名女性,年龄在48 - 73岁之间)进行了异质性样本的半结构式访谈。对访谈记录进行了主题分析。

结果

出现了五个总体主题:伴侣的心理负担很重,因为他们看着伴侣受苦会感到沮丧和痛苦,并试图保护配偶免受情感和身体上的痛苦。“这是一种受限的生活”:伴侣们表示不得不减少以前喜欢的共同活动,并且难以制定未来计划。调整生活:伴侣们必须对生活的许多方面做出相当大的调整,并采取实际和心理上的应对方式。“这是一种联合方法”:许多伴侣讨论了采用联合方法来管理类风湿性关节炎。已满足和未满足的支持需求差异很大,许多伴侣认为医疗专业人员需要采取联合治疗方法,其中要涉及并认可他们的作用。

结论

类风湿性关节炎患者的伴侣对患者的疾病管理至关重要,但数据显示许多伴侣承担着巨大的社会心理负担。医疗保健专业人员应意识到这一点,以便更好地支持应对类风湿性关节炎的夫妇。

相似文献

1
'Your whole life, your whole world, it changes': partners' experiences of living with rheumatoid arthritis.“你的整个人生,你的整个世界,都改变了”:类风湿关节炎患者伴侣的生活体验。
Musculoskeletal Care. 2010 Mar;8(1):46-54. doi: 10.1002/msc.165.
2
The meaning of being in transition to end-of-life care for female partners of spouses with cancer.癌症患者的女性伴侣进入终末期照护过渡期的意义。
Palliat Support Care. 2009 Dec;7(4):423-33. doi: 10.1017/S1478951509990435.
3
Rheumatoid arthritis patients' perceptions of mutuality in conversations with spouses/partners and their links with psychological and physical health.类风湿性关节炎患者对与配偶/伴侣对话中相互性的认知及其与心理和身体健康的关联。
Arthritis Rheum. 2008 Jul 15;59(7):921-8. doi: 10.1002/art.23821.
4
'The intruder': spouses' narratives about life with a chronically ill partner.“闯入者”:配偶讲述与慢性病伴侣共同生活的经历
J Clin Nurs. 2006 Mar;15(3):324-33. doi: 10.1111/j.1365-2702.2006.01290.x.
5
Psychosocial adaptation in female partners of men with prostate cancer.男性前列腺癌患者女性伴侣的心理社会适应。
Eur J Cancer Care (Engl). 2010 Mar;19(2):234-42. doi: 10.1111/j.1365-2354.2008.01012.x. Epub 2009 Jul 20.
6
The effect of hearing impairment in older people on the spouse.老年人听力障碍对配偶的影响。
Int J Audiol. 2008 Mar;47(3):141-51. doi: 10.1080/14992020701689696.
7
Nursing support at the onset of rheumatoid arthritis: Time and space for emotions, practicalities and self-management.类风湿关节炎发病时的护理支持:情感、实际问题及自我管理的时间与空间。
Musculoskeletal Care. 2008 Jun;6(2):124-34. doi: 10.1002/msc.115.
8
Lived experience of Korean women suffering from rheumatoid arthritis: a phenomenological approach.韩国类风湿性关节炎女性的生活经历:一种现象学方法。
Int J Nurs Stud. 2004 Mar;41(3):239-46. doi: 10.1016/S0020-7489(03)00132-9.
9
The health and life experiences of mothers with rheumatoid arthritis: a phenomenological study.类风湿关节炎母亲的健康与生活经历:一项现象学研究
Musculoskeletal Care. 2007 Dec;5(4):191-205. doi: 10.1002/msc.116.
10
Family pediatrics: report of the Task Force on the Family.家庭儿科学:家庭问题特别工作组报告
Pediatrics. 2003 Jun;111(6 Pt 2):1541-71.

引用本文的文献

1
Mental and Physical Well-Being of Partners of People Living with Chronic Pain: A Narrative Review.慢性疼痛患者伴侣的身心健康:一项叙述性综述。
Int J Environ Res Public Health. 2025 Jan 31;22(2):205. doi: 10.3390/ijerph22020205.
2
Significant others in inflammatory arthritis: roles, influences, and challenges-a scoping review.炎性关节炎患者的重要他人:角色、影响和挑战——范围综述。
Rheumatol Int. 2024 Oct;44(10):1849-1859. doi: 10.1007/s00296-024-05639-9. Epub 2024 Jul 6.
3
Partners' Experiences of Chronic Pain: A Qualitative Evidence Synthesis.
伴侣经历慢性疼痛:定性证据综合。
J Clin Psychol Med Settings. 2024 Sep;31(3):585-606. doi: 10.1007/s10880-024-10012-w. Epub 2024 Apr 13.
4
Identifying the features of partner acceptance of arthritis: A qualitative analysis.识别伴侣对关节炎的接纳特征:一项定性分析。
Can J Pain. 2018 Jul 23;2(1):205-217. doi: 10.1080/24740527.2018.1485482. eCollection 2018.
5
Partners of female patients with rheumatoid arthritis and reproductive decision-making: a constructivist grounded theory study.类风湿关节炎女性患者的伴侣与生育决策:一项建构主义扎根理论研究。
Rheumatol Adv Pract. 2021 Jun 21;5(3):rkab040. doi: 10.1093/rap/rkab040. eCollection 2021.
6
Rheumatology-led pregnancy clinic: men perspective.风湿免疫科主导的妊娠门诊:男性视角。
Clin Rheumatol. 2021 Aug;40(8):3067-3077. doi: 10.1007/s10067-020-05551-0. Epub 2021 Jan 15.
7
"Mastering a New Life Situation" - Patients' Preferences of Treatment Outcomes in Early Rheumatoid Arthritis - A Longitudinal Qualitative Study.“掌控新生活状况”——早期类风湿关节炎患者对治疗结果的偏好——一项纵向定性研究
Patient Prefer Adherence. 2020 Aug 13;14:1421-1433. doi: 10.2147/PPA.S253507. eCollection 2020.
8
What Is Relatives' Role in Arthritis Management? A Qualitative Study of the Perceptions of Patient-Relative Dyads.亲属在关节炎管理中的作用是什么?一项关于患者-亲属二元组认知的定性研究。
Patient Prefer Adherence. 2020 Jan 7;14:45-53. doi: 10.2147/PPA.S231919. eCollection 2020.
9
Patients and relatives coping with inflammatory arthritis: Care teamwork.炎症性关节炎患者及其家属的应对:关爱团队协作。
Health Expect. 2020 Feb;23(1):137-147. doi: 10.1111/hex.12982. Epub 2019 Nov 27.
10
Developing a socio-ecological model of dietary behaviour for people living with diabetes or high blood glucose levels in urban Nepal: A qualitative investigation.在尼泊尔城市中为患有糖尿病或高血糖人群制定社会生态饮食行为模型:一项定性研究。
PLoS One. 2019 Mar 25;14(3):e0214142. doi: 10.1371/journal.pone.0214142. eCollection 2019.