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“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.

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。

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