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Guardians Looking From Outside: Gendered Experiences of Labor Migration and Psychosocial Health Among Nepalese Migrant Fathers and Left-Behind Mothers 监护人从外面看:尼泊尔移民父亲和留守母亲的劳动力迁移与社会心理健康的性别体验
IF 3.2 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-09-19 DOI: 10.1177/10497323241265291
Megan Nguyen, Yoona Kim, Yuni Choi, Joyce Jang, Manju Shakya, Anup Adhikari, Nagendra P. Luitel, Pamela J. Surkan
Nepalese migrant workers are at heightened risk of adverse mental health problems. However, the social mechanisms by which experiences of labor migration create such vulnerabilities are not well understood. Moreover, limited attention has been paid to the experiences of left-behind spouses. This study explores how migrant fathers and left-behind mothers experience labor migration and how migration affects mental health across migrant household members, paying special attention to the role of gender. We conducted 29 in-depth interviews with Nepalese migrant fathers ( N = 18) in South Korea and left-behind mothers ( N = 11) in Nepal. Labor migration imposes substantial stress on the entire family. Migrant fathers discussed their feelings of guilt and worry regarding their relationships with their children due to physical and emotional distance. Left-behind mothers indicated loneliness and caregiver stress due to additional responsibilities as a single parent. Migrant fathers reported that they felt respected by their communities for their work, while left-behind mothers felt heavily scrutinized. Our findings highlight how labor migration reinforces gender inequalities in domestic responsibilities and norms regarding the expected roles of migrating men and left-behind women. These findings suggest that psychosocial services must be tailored to the unique needs of migrant workers and left-behind families.
尼泊尔移民工人面临着更大的心理健康问题风险。然而,人们对劳动力迁移经历造成这种脆弱性的社会机制并不十分了解。此外,人们对留守配偶的经历关注有限。本研究探讨了移民父亲和留守母亲如何经历劳动力迁移,以及迁移如何影响移民家庭成员的心理健康,并特别关注性别的作用。我们对在韩国的尼泊尔移民父亲(18 人)和在尼泊尔的留守母亲(11 人)进行了 29 次深入访谈。劳动力迁移给整个家庭带来了巨大的压力。移民父亲们谈到,由于身体和情感上的距离,他们对与子女的关系感到内疚和担忧。留守母亲则表示,作为单亲家庭的额外责任给她们带来了孤独感和照顾者的压力。外来务工的父亲表示,他们因工作而感到受到社区的尊重,而留守母亲则感到受到严厉的审查。我们的研究结果凸显了劳动力迁移是如何强化了家庭责任方面的性别不平等,以及有关迁移男性和留守女性预期角色的规范。这些研究结果表明,社会心理服务必须适应外来务工人员和留守家庭的独特需求。
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引用次数: 0
“That Is What We Have Left of Her”: The Significance of Transitional Objects After the Death of an Infant in a Norwegian Context "这就是她留给我们的一切":挪威语境下婴儿逝世后过渡物品的意义
IF 3.2 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-09-15 DOI: 10.1177/10497323241271920
Inger Emilie Værland, Anne Beth Gilja Johansen, Marta Høyland Lavik
When an infant dies in a neonatal intensive care unit in Norway, healthcare professionals provide bereaved parents with objects intended to help them processing their loss. Such objects can be clothes, blankets, soft animal toys, hand- and footprints, hair, as well as scrapbooks where the short life is documented through text and photo. By interviewing bereaved parents in three focus groups, we investigated the parents’ use of these objects. Applying the method of reflexive thematic analysis, we developed three themes from the data material: (i) the importance of preserving objects, (ii) the approach to the objects, and (iii) the ambivalence concerning the objects. Pertinent to all themes was the parents’ feeling of ambivalence toward the objects. On the one hand, the parents experienced the objects to affirm parenthood and manifest that the infant existed as a family member. Further, the objects were important in ritualization while according the child its status as deceased. Also, the objects helped the bereaved establish and keep continuing bonds with the deceased and to integrate their traumatic experience of losing a child. On the other hand, the bereaved parents shared that they were ambivalent toward the objects as they stirred up both good and painful emotions. The objects reminded them of their shocking and traumatic loss and the bereaved did not want to be confronted with this all the time. Therefore, through a preference for some objects and indifference toward others as time passed, the parents worked on transforming their bonds with the lost infant.
在挪威,当婴儿在新生儿重症监护室死亡时,医护人员会向失去亲人的父母提供一些物品,以帮助他们处理失去亲人的痛苦。这些物品可以是衣服、毯子、柔软的动物玩具、手印和脚印、头发以及通过文字和照片记录短暂生命的剪贴簿。通过在三个焦点小组中采访失去孩子的父母,我们调查了父母使用这些物品的情况。运用反思性主题分析方法,我们从数据资料中发展出三个主题:(i) 保存物品的重要性,(ii) 处理物品的方法,以及 (iii) 对物品的矛盾心理。与所有主题相关的是父母对物品的矛盾心理。一方面,父母认为这些物品是对父母身份的肯定,表明婴儿作为家庭成员而存在。此外,这些物品在仪式化方面也很重要,同时也赋予了孩子逝者的身份。此外,这些物品还有助于丧亲者与逝者建立和保持持续的联系,并帮助他们整合失去孩子的创伤经历。另一方面,丧亲父母也表示,他们对这些物品的态度很矛盾,因为这些物品既能激起他们美好的情感,也能激起他们痛苦的情感。这些物品让他们想起了令人震惊和痛苦的丧子之痛,丧亲者不希望一直面对这种情况。因此,随着时间的推移,父母们开始偏爱某些物品,而对其他物品则漠不关心,他们努力转变与失去婴儿之间的关系。
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引用次数: 0
Intersectionality and Caregiving: The Exclusion Experience and Coping Resources of Immigrant Women Caring for a Family Member With Severe Mental Illness. 交叉性与护理:照顾患有严重精神疾病家庭成员的移民妇女的排斥经历和应对资源。
IF 3.2 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-09-11 DOI: 10.1177/10497323241271996
Evgeny Knaifel,Ludmila Rubinstein
Intersectionality has become a central analytical framework in the study of exclusion and empowerment experiences among women from marginalized communities. However, the relevance of intersectionality to informal caregiving in mental healthcare has hardly been explored to date. The purpose of the current study is to examine the exclusion experiences and coping resources of immigrant women caring for a family member with a severe mental illness (SMI) through the lens of intersectionality theory. Semi-structured in-depth interviews were conducted with 26 informal female immigrant caregivers from the former Soviet Union residing in Israel. The interviews were analyzed using a qualitative content approach. The findings revealed that the participants experienced stigma and exclusion in several intersecting categories: economic marginalization of immigrant single mothers, ethnic and gender-based stigma of Russian-speaking women, gender-based domestic violence, and mental health stigma by professionals. The participants' coping resources included spirituality and religious faith, support groups, and social activism. The study provides insights into the burdens and rewards experienced by female immigrant caregivers of family members with SMI through the lens of intersectionality theory. Implications for adapting services to the contextual characteristics of female immigrant caregivers and minimizing intersectional stigma and inequities in informal healthcare are discussed.
交叉性已成为研究边缘化社区妇女受排斥和赋权经历的核心分析框架。然而,迄今为止,交叉性与心理健康护理中非正式护理的相关性几乎还没有被探讨过。本研究的目的是通过交叉性理论的视角,考察移民妇女在照顾患有严重精神疾病(SMI)的家庭成员时的排斥经历和应对资源。研究人员对居住在以色列的 26 名来自前苏联的非正式女性移民照顾者进行了半结构化深入访谈。访谈采用定性内容法进行分析。研究结果显示,参与者在几个相互交叉的类别中经历了污名化和排斥:移民单亲母亲的经济边缘化、俄语妇女的种族和性别污名化、基于性别的家庭暴力以及专业人士的心理健康污名化。参与者的应对资源包括精神和宗教信仰、支持团体和社会活动。这项研究通过交叉性理论的视角,深入分析了女性移民照顾者在照顾患有 SMI 的家庭成员时所经历的负担和收获。研究还讨论了如何根据女性移民照顾者的背景特点调整服务,以及如何最大限度地减少交叉性污名和非正规医疗保健中的不平等现象。
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引用次数: 0
Differences in the Use and Perception of Telehealth Across Four Mental Health Professions: Insights From a Secondary Analysis of Qualitative Data. 四个心理健康专业对远程医疗的使用和认知差异:定性数据二次分析的启示。
IF 3.2 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-09-11 DOI: 10.1177/10497323241271960
Milena Heinsch,Campbell Tickner,David Betts,Caragh Brosnan,Kate Vincent,Justin Canty
There is growing evidence that the uptake and use of telehealth is influenced by the distinct specialty area or type of healthcare service provided, with mental health services presenting particular challenges. However, little is known about how telehealth use differs between different mental health professions, and no qualitative research has explored variations in telehealth use and perspectives at the profession level within Australian mental health services. To address this gap, we analyzed transcripts from 19 semi-structured interviews conducted with mental healthcare professionals in a local health district within New South Wales, Australia. A secondary analysis of the data revealed the distinct ways in which different mental health professions perceive and engage with telehealth depending on their specific role and approach to practice. Application of a systems theory lens highlighted the challenges each profession faces at different levels of telehealth engagement, and the macro-systemic power dynamics and hierarchies that shape profession-specific differences in telehealth use.
越来越多的证据表明,远程医疗的吸收和使用受到所提供医疗保健服务的不同专业领域或类型的影响,其中心理健康服务面临着特殊的挑战。然而,人们对不同心理健康专业之间使用远程医疗的差异知之甚少,也没有定性研究探讨过澳大利亚心理健康服务中远程医疗在专业层面的使用和观点差异。为了填补这一空白,我们对澳大利亚新南威尔士州一个地方卫生区的心理保健专业人员进行的 19 次半结构式访谈的记录进行了分析。对数据的二次分析表明,不同的心理健康专业人员对远程医疗的看法和参与方式各不相同,这取决于他们的具体角色和实践方法。系统理论视角的应用凸显了每个专业在参与远程保健的不同层面上所面临的挑战,以及在远程保健使用中形成专业差异的宏观系统权力动态和等级制度。
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引用次数: 0
A Prospective Qualitative Inquiry of Patient Experiences of Cognitive Functional Therapy for Chronic Low Back Pain During the RESTORE Trial 在 RESTORE 试验期间对慢性腰痛认知功能疗法患者体验的前瞻性定性调查
IF 3.2 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-09-10 DOI: 10.1177/10497323241268777
Nardia-Rose Klem, Peter O’Sullivan, Anne Smith, Robert Schütze
Cognitive functional therapy (CFT) is a person-centered biopsychosocial physiotherapy intervention that has recently demonstrated large, durable effects in reducing pain and disability in people with chronic low back pain (CLBP). However, exploration of the treatment process from the patients’ perspectives, including the process of gaining control and agency over CLBP, is relatively understudied in this patient population. This qualitative study explored the experiences of eight participants from the RESTORE trial through longitudinally following their experiences, including interviews during baseline, mid-treatment, end-treatment, and 12-month follow-up. Data were analyzed according to a narrative approach. Findings described the overarching narrative themes of “The Journey to Self-Management.” Within this overarching narrative, four distinct narratives were identified, beginning with “Left High and Dry,” capturing the experience of isolation and abandonment with CLBP before commencing CFT, and concluding with three narratives of the experience of CFT from the start of treatment through to the 12-month follow-up. These included “Plain, Smooth Sailing,” describing a journey of relative ease and lack of obstacles; “Learning the Ropes and Gaining Sea Legs,” capturing an iterative process of learning and negotiating setbacks; and “Sailing Through Headwinds,” describing the experience of struggle to gain agency and control over CLBP through CFT. Clinicians treating individuals with CLBP can use these insights to more effectively facilitate self-management, and people living with CLBP may find resonance from the narrative themes to support their journeys.
认知功能疗法(CFT)是一种以人为本的生物-心理-社会物理治疗干预方法,最近已在减轻慢性腰背痛(CLBP)患者的疼痛和残疾方面取得了巨大而持久的效果。然而,从患者的角度探索治疗过程,包括获得对慢性腰背痛的控制权和代理权的过程,在这一患者群体中的研究相对较少。这项定性研究通过纵向跟踪 RESTORE 试验中八名参与者的经历,包括基线、治疗中期、治疗末期和 12 个月随访期间的访谈,对他们的经历进行了探讨。数据按照叙事方法进行分析。研究结果描述了 "自我管理之旅 "这一总体叙事主题。在这一总体叙事中,确定了四种不同的叙事,首先是 "被遗弃在高处和干涸",反映了开始 CFT 之前与 CLBP 患者隔离和被遗弃的经历,最后是关于从治疗开始到 12 个月随访期间 CFT 经历的三种叙事。这些叙述包括:"一帆风顺",描述了一段相对轻松和没有障碍的旅程;"学习绳索和获得海脚",捕捉了一个学习和协商挫折的反复过程;以及 "逆风航行",描述了通过 CFT 获得对 CLBP 的代理权和控制权的奋斗经历。治疗慢性阻塞性肺病患者的临床医生可以利用这些见解来更有效地促进自我管理,而慢性阻塞性肺病患者也可以从叙事主题中找到共鸣,从而支持他们的旅程。
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引用次数: 0
Black Family Members' Experiences and Interpretations of Supportive Resources for Them and Their Relatives With Substance Use Disorders: A Focused Ethnography. 黑人家庭成员的经历及其对为他们及其患有药物使用障碍的亲属提供的支持性资源的理解:重点民族志。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-08-30 DOI: 10.1177/10497323241263261
Esther N Monari, Richard Booth, Cheryl Forchuk, Rick Csiernik

While previous research explored the utilization of culturally supportive resources in multiethnic communities, there is a paucity of information regarding culturally relevant resources for Black Canadian family members. The study explored Black family members' experiences and interpretations regarding access to culturally supportive resources for family members and their relatives who suffer from substance use disorders. Black family members are defined as African Canadians, Caribbean Canadians, or Caribbean Blacks. A focused ethnography was conducted with a purposive sample of 26 Black family members in Ontario, Canada. The interviews were conducted from June to September 2021. Seventeen participants originated from parts of Africa, and nine were from different parts of the Caribbean. The participants comprised mothers (n = 5), fathers (n = 2), step-fathers (n = 1), husbands (n = 1), wives (n = 2), uncles (n = 5), aunties (n = 2), siblings (n = 5), in-laws (n = 2), and guardians (n = 1). Leininger's four Phases of Ethnonursing Qualitative Data Analysis were used for data analysis. Three themes were generated: (1) Navigating Existing Options and Resources for Families and Their Relatives; (2) Drawing upon Religion and Spirituality as Perceived Resources; and (3) Call for Culturally Relevant Programs for Substance Use Disorders Harm Reduction. Participants described experiencing a lack of culturally relevant resources and subsequently opting to navigate other resources. One such option was to send their relatives back to their country of origin to access cultural rehabilitation treatment options. There is a significant need for guidelines and policies regarding creating timely access to culturally relevant resources in Canada that support families and their relatives towards harm reduction and recovery outcomes.

以前的研究探讨了多民族社区文化支持性资源的利用情况,但有关加拿大黑人家庭成员文化相关资源的信息却很少。本研究探讨了黑人家庭成员在为患有药物使用障碍的家庭成员及其亲属获取文化支持性资源方面的经验和解释。黑人家庭成员被定义为非裔加拿大人、加勒比海加拿大人或加勒比海黑人。我们对加拿大安大略省的 26 名黑人家庭成员进行了有针对性的人种学调查。访谈于 2021 年 6 月至 9 月进行。17 名参与者来自非洲部分地区,9 名来自加勒比海不同地区。参与者包括母亲(5 人)、父亲(2 人)、继父(1 人)、丈夫(1 人)、妻子(2 人)、叔叔(5 人)、阿姨(2 人)、兄弟姐妹(5 人)、姻亲(2 人)和监护人(1 人)。数据分析采用了 Leininger 的 "民族护理定性数据分析的四个阶段"。得出了三个主题:(1) 为家庭及其亲属提供现有的选择和资源;(2) 利用宗教和精神作为感知资源;(3) 呼吁制定与文化相关的减少药物使用失调伤害计划。参与者描述了缺乏文化相关资源的经历,并随后选择了利用其他资源。其中一种选择是将他们的亲属送回原籍国,以获得文化康复治疗选择。加拿大亟需制定指导方针和政策,及时提供与文化相关的资源,支持家庭及其亲属实现减低伤害和康复的结果。
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引用次数: 0
Creating "a Safe Place to Go": Yarning With Health Workers About Stroke Recovery Care for Aboriginal Stroke Survivors-A Qualitative Study. 创造 "安全去处":与医护人员一起学习土著卒中幸存者的卒中康复护理--定性研究。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-08-28 DOI: 10.1177/10497323241268776
Heidi Janssen, Simone Owen, Amy Thompson, Jackson Newberry-Dupe, Natalie Ciccone, Reakeeta Smallwood, Uncle Neville Sampson, Vickie Brandy, Joe Miller, Aunty Audrey Trindall, Rachel Peake, Kim Usher, Christopher Levi

Stroke affects Aboriginal people at disproportionate rates compared to other populations in Australia. Aboriginal peoples are less likely to receive a timely stroke diagnosis, or timely culturally responsive treatment, as there are very few stroke resources and recovery plans that have been developed by Aboriginal peoples for Aboriginal peoples. Understanding how to develop and implement culturally responsive stroke care requires research approaches that are informed by and with Aboriginal people. A qualitative Indigenous research methodology including "yarning" was undertaken to understand the experiences of both Aboriginal and non-Aboriginal health workers from nine health services providing stroke rehabilitation and recovery support to Aboriginal people living within the participating communities. Data were analyzed using an inductive approach driven by an Indigenous research approach. Yarns revealed three themes: (i) the role of culturally safe health environments to support stroke survivors, their family, and health workers; and how (ii) complicated, under-resourced systems impede the capacity to support stroke survivors; and (iii) collaborative and adaptive practices prevent people "falling through the cracks." This study highlights the need to scrutinize the cultural safety of health care, current health systems, workforce, and culture and how these influence the capacity of health workers to provide care that is responsive to the individual needs of Aboriginal stroke survivors and their families. These learnings will inform the co-design of a culturally responsive stroke recovery care strategy to improve the recovery experience and health and well-being of Aboriginal people and their families living with stroke.

与澳大利亚其他人群相比,中风对原住民的影响更大。原住民不太可能得到及时的中风诊断或及时的文化适应性治疗,因为由原住民为原住民开发的中风资源和康复计划少之又少。要了解如何开发和实施文化顺应性中风护理,需要采用由原住民提供信息并与原住民共同参与的研究方法。我们采用了包括 "学习 "在内的土著定性研究方法,以了解来自九个医疗服务机构的土著和非土著医疗工作者的经验,他们为生活在参与社区的土著居民提供中风康复和恢复支持。在土著研究方法的推动下,采用归纳法对数据进行了分析。结果揭示了三个主题:(i) 文化上安全的医疗环境对支持中风幸存者、其家人和医务工作者的作用;(ii) 复杂、资源不足的系统如何阻碍了支持中风幸存者的能力;(iii) 协作和适应性实践如何防止人们 "掉进缝隙"。本研究强调了仔细检查医疗保健文化安全、当前医疗系统、劳动力和文化的必要性,以及这些因素如何影响医务工作者提供满足原住民中风幸存者及其家人个人需求的医疗保健的能力。这些知识将为共同设计具有文化响应性的中风康复护理战略提供信息,以改善中风患者及其家人的康复体验、健康和福祉。
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引用次数: 0
Barriers to Childhood Immunization in Rural and Remote Areas: A Qualitative Exploration From the Perspectives of Community Leaders in Sindh, Pakistan. 农村和偏远地区儿童免疫接种的障碍:从巴基斯坦信德省社区领袖的角度进行的定性研究。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-08-27 DOI: 10.1177/10497323241263279
Sundeep Sahitia, Idayu Badilla Idris, Nazarudin Safian, Rozina F Ali, Khadijah Shamsuddin, Rozita Hod

Despite overall improvements observed at the national level, there is a significant disparity in childhood vaccination coverage rates between urban and rural regions, particularly within tribal and remote areas in Pakistan. Our study aimed to explore the views of community/tribal leaders concerning barriers and their local solutions for improving vaccine uptake, with a specific focus on remote settings. An exploratory qualitative research study was conducted from July to September 2019 in Shikarpur, Sindh, Pakistan. We interviewed 11 community leaders, after developing a semi-structured interview guide based on the health belief model. Following validation, the collected data was transcribed and subsequently translated into the English language. A stepwise process of manual familiarization, coding, theme generation, and theme review using an inductive approach was followed. While most of the rural community leaders expressed a willingness to support vaccinations, numerous unexplored barriers were identified. These barriers included an unsustainable communication system heavily dependent on polio mobile teams, discourteous behavior of healthcare personnel, cultural restrictions that limited women's involvement, economic hardships, limited transportation options, insufficient collaboration with the education sector, poor knowledge among community leaders, and security concerns. Additionally, they proposed some innovative solutions of information dissemination methods through the Ottaque system, ethics-based training, subsidized transportation services or voucher system, and addressing security concerns in collaboration with community leaders. Our findings suggest policymakers take both community leaders and members for an inclusive policy-making process to redraft the special policy for these remote and rural areas.

尽管在全国范围内观察到儿童疫苗接种率总体上有所提高,但城市和农村地区,尤其是巴基斯坦部落和偏远地区的儿童疫苗接种率仍有很大差距。我们的研究旨在探讨社区/部落领袖对提高疫苗接种率的障碍及其当地解决方案的看法,特别关注偏远地区。我们于 2019 年 7 月至 9 月在巴基斯坦信德省希卡布尔开展了一项探索性定性研究。在根据健康信念模型制定了半结构化访谈指南后,我们对 11 名社区领袖进行了访谈。经过验证后,我们对收集到的数据进行了转录,随后翻译成英语。我们采用归纳法,逐步进行了人工熟悉、编码、主题生成和主题审查。虽然大多数农村社区领袖都表示愿意支持疫苗接种,但也发现了许多未被发掘的障碍。这些障碍包括严重依赖脊髓灰质炎流动小组的不可持续的通信系统、医疗保健人员的不礼貌行为、限制妇女参与的文化限制、经济困难、有限的交通选择、与教育部门的合作不足、社区领袖的知识贫乏以及安全问题。此外,他们还提出了一些创新的解决方案,如通过 Ottaque 系统传播信息的方法、以道德为基础的培训、补贴交通服务或代金券制度,以及与社区领袖合作解决安全问题。我们的调查结果建议政策制定者与社区领袖和成员共同参与包容性的政策制定过程,重新起草针对这些偏远农村地区的特殊政策。
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引用次数: 0
Dealing With Temporality in Patients With Life-Limiting Disease: An International Qualitative Study. 限期生存疾病患者的时间性处理:一项国际定性研究。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-08-26 DOI: 10.1177/10497323241263751
Melanie Joshi, Guðlaug Helga Ásgeirsdóttir, Miša Bakan, Hana Kodba Čeh, Dagny Renata Faksvåg Haugen, Urška Lunder, Eva Víbora Martín, Beth Morris, Birgit H Rasmussen, Elisabeth Romarheim, Vilma Tripodoro, Agnes van der Heide, Verónica Veloso, Berivan Yildiz, Sofía Zambrano, Julia Strupp, Raymond Voltz

The prospect of death influences people's thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.e., locally in three countries, with codes shared in the three-country subgroup, and in all 10 countries with a codebook that we developed). We found that the patients' thoughts were oriented toward all three time levels (i.e., past, present, and future). Complementing these levels, we identified another, namely, the future after death. Each time level included patients actively and passively dealing with their thoughts. Past themes were remorse and regret, nostalgia, and coming to terms with past choices; present themes were feeling grateful for being alive, a time for farewells, and living for the day; future themes were worries about the future, to miss out, hope, ideas about death and dying, and planning the near future; and future after death themes were not being there, worries about loved ones, and preparations for a future after death. A changed view on lifetime and avoidance of thinking about a certain time level related to several time levels, while desire to die fluctuated between levels and between acting on and feeling about it. Living for the day, worries about the future, and worries about the well-being of loved ones were common themes in all countries.

死亡的前景会影响人们对剩余时间的看法和处理方式。我们旨在了解患有进展性、局限生命疾病的患者是着眼于过去、现在还是未来,以及他们如何处理时间性问题。我们对 10 个国家的临终患者进行了 57 次深入访谈,采用了三个层次的主题分析(即在三个国家进行本地分析,在三个国家分组中共享代码,在所有 10 个国家中使用我们开发的代码集)。我们发现,患者的想法面向所有三个时间层面(即过去、现在和未来)。作为对这些层次的补充,我们还发现了另一个层次,即死后的未来。每个时间层次都包括患者主动和被动地处理他们的想法。过去的主题包括悔恨和遗憾、怀旧和接受过去的选择;现在的主题包括对活着心存感激、告别的时刻和过好每一天;未来的主题包括对未来的担忧、错过、希望、关于死亡和临终的想法以及规划近期的未来;死后的未来主题包括不在身边、对亲人的担忧以及为死后的未来做准备。对终生的看法的改变和对某一时间段的回避与几个时间段有关,而对死亡的渴望则在不同的时间段之间波动,在行动和感觉之间波动。为今天而活、对未来的担忧和对亲人福祉的担忧是所有国家的共同主题。
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引用次数: 0
Disruption and Improvisation: Experiences of Loneliness for People With Chronic Illness. 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 Pub Date : 2024-08-26 DOI: 10.1177/10497323241265329
Melissa Mei Yin Cheung, Sophie Lewis, Revati Raja, Karen Willis, Leslie Dubbin, Anne Rogers, Maja Lindegaard Moensted, Lorraine Smith

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.

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。
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Qualitative Health Research
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