• 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

混乱与即兴应对:慢性病患者的孤独体验

Disruption and Improvisation: Experiences of Loneliness for People With Chronic Illness.

作者信息

Cheung Melissa Mei Yin, Lewis Sophie, Raja Revati, Willis Karen, Dubbin Leslie, Rogers Anne, Moensted Maja Lindegaard, Smith Lorraine

机构信息

School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, Australia.

Institute for Health and Sport, Victoria University, Melbourne, VIC, Australia.

出版信息

Qual Health Res. 2025 Mar;35(3):319-334. doi: 10.1177/10497323241265329. Epub 2024 Aug 26.

DOI:10.1177/10497323241265329
PMID:39186640
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11852523/
Abstract

Chronic illness can disrupt many aspects of life, including identity, social relationships, and anticipated life trajectories. Despite significant scholarship on chronic illness, we know less about the ways in which chronic illness impacts feelings of loneliness and how people with chronic illness deal with loneliness. Drawing on concepts of biographical disruption and liminality and data from walking and photo-elicitation interviews with 14 people, we aimed to explore how people with chronic illness experience loneliness in their everyday lives. Tracing how past and present illness experiences are implicated in the lived experience of loneliness and the strategies people use to manage loneliness, our findings illustrated that being caught in a liminal state where participants struggled to maintain and adapt to a new normality in life with chronic illness was a central thread woven throughout their experience of loneliness. Although participants drew on their personal agency and adopted strategies to account for, manage, and limit disruptions from chronic illness and loneliness, they found that their strategies were not completely effective or satisfactory. Chronic illness and loneliness continue to be largely considered as an individual's problem, limiting opportunities for people with chronic illness who experience loneliness to seek support and social connection. Our research highlighted that chronic illness and loneliness need to be acknowledged as both a personal and collective problem, with multi-level responses that involve individuals, communities, and society.

摘要

慢性病会扰乱生活的许多方面,包括身份认同、社会关系和预期的人生轨迹。尽管关于慢性病已有大量学术研究,但我们对慢性病影响孤独感的方式以及慢性病患者如何应对孤独感了解较少。借助人生传记中断和阈限性的概念,以及对14人进行的步行和照片引发访谈的数据,我们旨在探究慢性病患者在日常生活中如何体验孤独感。通过追溯过去和现在的疾病经历如何与孤独的生活经历以及人们用来应对孤独的策略相关联,我们的研究结果表明,处于一种阈限状态,即参与者努力维持并适应慢性病生活中的新常态,是贯穿他们孤独经历的一条主线。尽管参与者发挥个人能动性并采取策略来应对、管理和限制慢性病及孤独带来的干扰,但他们发现这些策略并不完全有效或令人满意。慢性病和孤独在很大程度上仍被视为个人问题,这限制了经历孤独的慢性病患者寻求支持和社会联系的机会。我们的研究强调,慢性病和孤独需要被视为个人和集体问题,需要个人、社区和社会做出多层次的回应。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/4353a727f6d2/10.1177_10497323241265329-fig9.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/930d74e38b15/10.1177_10497323241265329-fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/5af14155be43/10.1177_10497323241265329-fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/116dcc80d38d/10.1177_10497323241265329-fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/770063d86002/10.1177_10497323241265329-fig4.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/1e547a227172/10.1177_10497323241265329-fig5.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/991d6cad634f/10.1177_10497323241265329-fig6.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/58fdb6043454/10.1177_10497323241265329-fig7.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/f9783cb02f55/10.1177_10497323241265329-fig8.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/4353a727f6d2/10.1177_10497323241265329-fig9.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/930d74e38b15/10.1177_10497323241265329-fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/5af14155be43/10.1177_10497323241265329-fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/116dcc80d38d/10.1177_10497323241265329-fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/770063d86002/10.1177_10497323241265329-fig4.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/1e547a227172/10.1177_10497323241265329-fig5.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/991d6cad634f/10.1177_10497323241265329-fig6.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/58fdb6043454/10.1177_10497323241265329-fig7.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/f9783cb02f55/10.1177_10497323241265329-fig8.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/304d/11852523/4353a727f6d2/10.1177_10497323241265329-fig9.jpg

相似文献

1
Disruption and Improvisation: Experiences of Loneliness for People With Chronic Illness.混乱与即兴应对:慢性病患者的孤独体验
Qual Health Res. 2025 Mar;35(3):319-334. doi: 10.1177/10497323241265329. Epub 2024 Aug 26.
2
There but not really involved: The meanings of loneliness for people with chronic illness.存在却未真正涉及:慢性病患者孤独感的含义。
Soc Sci Med. 2024 Feb;343:116596. doi: 10.1016/j.socscimed.2024.116596. Epub 2024 Jan 17.
3
Understanding and using experiences of social care to guide service improvements: translating a co-design approach from health to social care.理解和利用社会关怀经验指导服务改进:将共同设计方法从卫生领域转化到社会关怀领域。
Health Soc Care Deliv Res. 2024 Aug;12(27):1-84. doi: 10.3310/MYHT8970.
4
Biographical suspension and liminality of Self in accounts of severe sciatica.自传性暂停和自我的阈限体验在严重坐骨神经痛描述中的体现。
Soc Sci Med. 2018 Dec;218:28-36. doi: 10.1016/j.socscimed.2018.10.001. Epub 2018 Oct 2.
5
Understanding the Meaning of Loneliness and Social Engagement for the Workings of a Social Network Intervention Connecting People to Resources and Valued Activities.理解孤独感和社会参与对于连接人们与资源和有价值活动的社交网络干预措施的运作意义。
Health Expect. 2024 Dec;27(6):e70111. doi: 10.1111/hex.70111.
6
Older people living alone at home with terminal cancer.患有晚期癌症且独自在家生活的老年人。
Eur J Cancer Care (Engl). 2016 May;25(3):356-64. doi: 10.1111/ecc.12314. Epub 2015 Apr 7.
7
Loneliness as a Biographical Disruption-Theoretical Implications for Understanding Changes in Loneliness.孤独作为一种传记性的中断——理解孤独变化的理论意义。
J Gerontol B Psychol Sci Soc Sci. 2020 Oct 16;75(9):2029-2039. doi: 10.1093/geronb/gbaa097.
8
Ménière's disease and biographical disruption: Where family transitions collide.梅尼埃病与生活经历的扰乱:家庭变迁的冲突之处
Soc Sci Med. 2016 Oct;166:177-185. doi: 10.1016/j.socscimed.2016.08.025. Epub 2016 Aug 18.
9
Men with prostate cancer over the first year of illness: their experiences as biographical disruption.患有前列腺癌的男性在患病的头一年:他们作为生活轨迹被打乱的经历。
Support Care Cancer. 2010 Jan;18(1):11-9. doi: 10.1007/s00520-009-0624-4. Epub 2009 Apr 7.
10
Lived experience of loneliness in psychosis: A qualitative approach.精神病患者孤独感的生活体验:一种定性研究方法。
J Ment Health. 2022 Aug;31(4):543-550. doi: 10.1080/09638237.2021.2022622. Epub 2022 Jan 3.

本文引用的文献

1
Biographical disruption, redefinition, and recovery: Illness identities of women with depression and diabetes.传记性破坏、重新定义和恢复:患有抑郁症和糖尿病的女性的疾病身份。
Health (London). 2024 Nov;28(6):918-936. doi: 10.1177/13634593231213773. Epub 2023 Dec 9.
2
The prevalence of chronic and episodic loneliness and social isolation from a longitudinal survey.从纵向调查看慢性和偶发性孤独及社会隔离的普遍性。
Sci Rep. 2023 Aug 1;13(1):12453. doi: 10.1038/s41598-023-39289-x.
3
Biographical dialectics: The ongoing and creative problem solving required to negotiate the biographical disruption of chronic illness.
传记辩证法:在应对慢性疾病带来的传记性破坏时,持续不断且富有创造性的问题解决过程。
Soc Sci Med. 2023 May;325:115900. doi: 10.1016/j.socscimed.2023.115900. Epub 2023 Apr 11.
4
The lived experiences of loneliness of older adults with chronic conditions aging at home: A qualitative systematic review and meta-aggregation.老年人慢性病居家养老孤独体验的质性系统评价和元综合。
Geriatr Nurs. 2023 May-Jun;51:274-285. doi: 10.1016/j.gerinurse.2023.03.025. Epub 2023 Apr 7.
5
Exploring the experiences of loneliness in adults with mental health problems: A participatory qualitative interview study.探索心理健康问题成年人孤独感的体验:一项参与式定性访谈研究。
PLoS One. 2023 Mar 7;18(3):e0280946. doi: 10.1371/journal.pone.0280946. eCollection 2023.
6
Social dimensions of chronic respiratory disease: stigma, isolation, and loneliness.慢性呼吸道疾病的社会维度:耻辱感、孤立和孤独。
Curr Opin Support Palliat Care. 2022 Dec 1;16(4):195-202. doi: 10.1097/SPC.0000000000000616. Epub 2022 Sep 13.
7
Why Loneliness Interventions Are Unsuccessful: A Call for Precision Health.为何孤独干预措施未获成功:精准健康之呼吁。
Adv Geriatr Med Res. 2020;2(3). doi: 10.20900/agmr20200016. Epub 2020 Jun 17.
8
Exploring the nature and variation of the stigma associated with loneliness.探索与孤独相关的污名的本质和变化。
J Soc Pers Relat. 2022 Sep;39(9):2658-2679. doi: 10.1177/02654075221087190. Epub 2022 Apr 21.
9
Loneliness and health.孤独与健康。
Nat Rev Dis Primers. 2022 Apr 14;8(1):22. doi: 10.1038/s41572-022-00355-9.
10
Liminality: A major category of the experience of cancer illness.阈限性:癌症疾病体验的一个主要类别。
J Bioeth Inq. 2022 Mar;19(1):37-48. doi: 10.1007/s11673-022-10175-x.