中断与即兴:慢性病患者的孤独体验》。

IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE
Melissa Mei Yin Cheung, Sophie Lewis, Revati Raja, Karen Willis, Leslie Dubbin, Anne Rogers, Maja Lindegaard Moensted, Lorraine Smith
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引用次数: 0

摘要

慢性疾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。尽管有大量关于慢性病的学术研究,但我们对慢性病如何影响孤独感以及慢性病患者如何应对孤独感却知之甚少。借鉴 "传记中断 "和 "边缘性 "的概念,以及对 14 人进行的步行和照片启发式访谈的数据,我们旨在探索慢性病患者在日常生活中是如何体验孤独的。通过追溯过去和现在的疾病经历是如何与孤独的生活体验相联系的,以及人们管理孤独的策略,我们的研究结果表明,参与者陷入了一种边缘状态,在这种状态下,他们努力维持和适应慢性病患者生活的新常态,这是贯穿他们孤独体验的一条主线。虽然参与者利用他们的个人能动性,采取了各种策略来应对、管理和限制慢性病和孤独带来的干扰,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的问题,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,慢性病和孤独感既是个人问题,也是集体问题,需要采取涉及个人、社区和社会的多层次应对措施。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Disruption and Improvisation: Experiences of Loneliness for People With Chronic Illness.

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.

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来源期刊
CiteScore
6.80
自引率
6.20%
发文量
109
期刊介绍: QUALITATIVE HEALTH RESEARCH is an international, interdisciplinary, refereed journal for the enhancement of health care and to further the development and understanding of qualitative research methods in health care settings. We welcome manuscripts in the following areas: the description and analysis of the illness experience, health and health-seeking behaviors, the experiences of caregivers, the sociocultural organization of health care, health care policy, and related topics. We also seek critical reviews and commentaries addressing conceptual, theoretical, methodological, and ethical issues pertaining to qualitative enquiry.
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