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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.

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/11852523/930d74e38b15/10.1177_10497323241265329-fig1.jpg

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