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A Participatory Evaluation of an Urban Garden Project in Ecuador: Exploring Factors That Impact the Recovery of People With Severe Mental Health Problems. 对厄瓜多尔城市花园项目的参与式评估:探索影响严重心理健康问题患者康复的因素。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-07-20 DOI: 10.1177/10497323241245867
Emilia C Zamora-Moncayo, Bernarda Herrera, June Larrieta, Aimée DuBois, Georgina Miguel Esponda

For the past years, Ecuador has been transitioning away from a hospital-based model of mental healthcare to one that is community-centred. However, challenges associated with hospital-based models endure, notably financial burden faced by those with severe mental health problems (SMHPs) due to labour market discrimination. Employment access for this group is often disregarded in policy planning, despite evidence of its benefits on mental health. Huertomanías, an urban garden initiative in Ecuador founded in 2015, works with individuals with SMHPs, providing work, income, and social inclusion. A case study using a participatory approach was carried out to explore factors that impact the recovery of people with SMHPs. Twelve participants engaged in diverse stages of the research, where several participatory activities were conducted including cognitive mapping, a photovoice project, and interviews. The analysis employed a thematic approach leading to four categories of impact within the urban garden: autonomy (financial and personal), interpersonal relations and relation with the environment, mental health, and family dynamics. A final category of impact was established encompassing external factors (family support and public policy and healthcare services) that influence recovery. Findings suggest that the urban garden promotes autonomy and active participation within society, improves mental health, and transforms family dynamics. Further, this study highlights the importance of community-based mental healthcare (CBMHC), emphasising the need of public policies and healthcare in promoting autonomy through employment and community-centred services. Lastly, the study contributes insights into recovery experiences and CBMHC benefits, informing programme development and similar initiatives in Latin America.

过去几年来,厄瓜多尔一直在从以医院为基础的精神卫生保健模式向以社区为中心的模式过渡。然而,与医院模式相关的挑战依然存在,特别是有严重精神健康问题(SMHPs)的人因劳动力市场歧视而面临的经济负担。尽管有证据表明就业对心理健康有益,但在政策规划中往往忽视了这一群体的就业途径。厄瓜多尔的城市花园倡议 "Huertomanías "成立于2015年,它与有严重精神健康问题(SMHPs)的人合作,为他们提供工作、收入和社会包容。我们采用参与式方法开展了一项案例研究,以探讨影响 SMHPs 患者康复的因素。12 名参与者参与了研究的不同阶段,并开展了多项参与性活动,包括认知地图绘制、摄影舆论项目和访谈。分析采用了主题方法,在城市花园中得出了四个影响类别:自主性(经济和个人)、人际关系和与环境的关系、心理健康和家庭动态。最后一类影响包括影响康复的外部因素(家庭支持、公共政策和医疗保健服务)。研究结果表明,城市花园促进了自主性和对社会的积极参与,改善了心理健康,并改变了家庭动态。此外,本研究还强调了以社区为基础的精神医疗保健(CBMHC)的重要性,强调了公共政策和医疗保健在通过就业和以社区为中心的服务促进自主性方面的必要性。最后,这项研究有助于深入了解康复经验和基于社区的精神保健的益处,为拉丁美洲的计划制定和类似举措提供信息。
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引用次数: 0
The Eternal Present: A Photovoice Study of the Experience of Geriatrics Residents During the COVID-19 Pandemic. 永恒的现在:关于 COVID-19 大流行期间老年医学住院医师经历的摄影选择研究。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-07-18 DOI: 10.1177/10497323241245340
Juan Pablo Negrete-Najar, Adina Radosh Sverdlin, Alejandro Arreola Rodríguez, Ana Patricia Navarrete Reyes

During the COVID-19 pandemic, medical residents had the task of being the frontline of the response, being exposed to high risk of infection, increased clinical duty, and long and irregular working hours in highly restricted environments, increasing their levels of stress. We sought to expose the experiences of a group of geriatrics residents during this period of change in their professional and personal lives through the photovoice methodology. Thirteen participants were recruited and had 2 weeks to take photographs. The photographs were discussed in group meetings; the content of the conversations was transcribed and analyzed using interpretive description. Sixteen themes were identified. They were divided into personal life (11 themes) and life as a resident (5 themes). Adaptation was the main theme that came into discussion. The photographs and themes show how life changed for the participants, having a feeling of isolation, especially from their families, and highlighting their experiences as a team and community. While the pandemic, particularly at its beginning, was a period of uncertainty and a heavy load of work, it also provided learning and experience to this group of young physicians, which should not hide the fact that mental health concerns and burnout were a common situation. An online gallery was created which is publicly accessible.

在 COVID-19 大流行期间,住院医师的任务是在第一线采取应对措施,他们面临着高感染风险、更多的临床任务以及在高度受限的环境中长时间、不规律的工作,这些都增加了他们的压力。我们试图通过摄影选题的方法,揭示一组老年医学住院医师在这一职业和个人生活变化时期的经历。我们招募了 13 名参与者,让他们在两周内拍摄照片。在小组会议上对照片进行了讨论;谈话内容被转录,并使用解释性描述进行了分析。共确定了 16 个主题。这些主题分为个人生活(11 个主题)和居民生活(5 个主题)。适应是讨论的主要主题。这些照片和主题显示了参与者的生活发生了怎样的变化,有一种与世隔绝的感觉,尤其是与家人隔绝的感觉,并突出了他们作为一个团队和社区的经历。虽然大流行,特别是在开始阶段,是一个充满不确定性和繁重工作的时期,但它也为这群年轻医生提供了学习和经验,这不应掩盖心理健康问题和职业倦怠是一个普遍情况的事实。我们创建了一个在线画廊,供公众访问。
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引用次数: 0
Being a Woman Is 100% Significant to My Experiences of Attention Deficit Hyperactivity Disorder and Autism: Exploring the Gendered Implications of an Adulthood Combined Autism and Attention Deficit Hyperactivity Disorder Diagnosis. 身为女性对我的注意力缺陷多动障碍和自闭症经历具有 100% 的重要意义:探索成年后合并自闭症和注意力缺陷多动障碍诊断的性别影响。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-07-18 DOI: 10.1177/10497323241253412
Emma Craddock

This article provides original insight into women's experiences of adulthood diagnoses of attention deficit hyperactivity disorder (ADHD) and autism. Research exploring experiences of adulthood diagnoses of these conditions is emerging. Yet, there is no research about the gendered experiences of an adulthood combined ADHD and autism (AuDHD) diagnosis. This article addresses this gap through interpretative phenomenological analysis of email interviews with six late-diagnosed AuDHD women revealing the complex interplay between late diagnosis, being a woman, and combined diagnoses of ADHD and autism. It underscores how gender norms and stereotypes contribute to the oversight and dismissal of women's neurodivergence. Interpretative phenomenological analysis reveals the inextricability of femininity and neurotypicality, the gendered burden, discomfort, and adverse consequences of masking, along with the adverse outcomes of insufficient masking. Being an undiagnosed AuDHD woman is a confusing and traumatising experience with profound and enduring repercussions. The impact of female hormones exacerbated participants' struggles with (peri)menopause often being a catalyst for seeking diagnosis after decades of trauma. The epistemic injustice of not knowing they were neurodivergent compounded this trauma. Diagnosis enabled participants to overcome epistemic injustice and moved them into a feminist standpoint from which they challenge gendered inequalities relating to neurodiversity. This article aims to increase understanding and representation of late-diagnosed AuDHD women's lived experiences. The findings advocate for trauma-informed pre- and post-diagnosis support which addresses the gendered dimension of women's experiences of being missed and dismissed as neurodivergent. There needs to be better clinical and public understanding of how AuDHD presents in women to prevent epistemic injustice.

本文就女性成年后被诊断患有注意力缺陷多动障碍(ADHD)和自闭症的经历提供了独到的见解。探索成年后被诊断患有这些疾病的经历的研究正在兴起。然而,目前还没有关于成年后合并注意力缺陷多动障碍和自闭症(AuDHD)诊断的性别体验的研究。本文通过对六名晚期诊断为 AuDHD 的女性的电子邮件访谈进行解释性现象学分析,揭示了晚期诊断、女性身份以及多动症和自闭症合并诊断之间复杂的相互作用,从而弥补了这一空白。它强调了性别规范和陈规定型观念是如何导致忽视和忽视女性的神经分裂的。解释性现象学分析揭示了女性特质与神经典型性的不可分割性、性别负担、不适感、掩饰的不良后果以及掩饰不足的不良后果。作为一名未被诊断出患有自闭症、听力障碍和多重障碍的女性,这是一种令人困惑和痛苦的经历,会产生深远而持久的影响。女性荷尔蒙的影响加剧了参与者的挣扎,(围)更年期往往是数十年创伤后寻求诊断的催化剂。不知道自己是神经变异者的认识论上的不公正加剧了这种创伤。诊断使参与者克服了认识上的不公正,并使她们站在女权主义者的立场上,挑战与神经多样性相关的性别不平等。这篇文章旨在增加对晚期诊断为 AuDHD 的女性生活经历的了解和表述。研究结果提倡在诊断前和诊断后提供以创伤为基础的支持,以解决女性被漏诊和被认为是神经变异者的性别维度问题。临床和公众需要更好地了解 AuDHD 在女性中的表现,以防止认识上的不公正。
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引用次数: 0
Understanding the Narratives of Child Sexual Abuse. 了解儿童性虐待的叙述。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-07-01 Epub Date: 2024-01-16 DOI: 10.1177/10497323231218828
Mari Dalen Herland

This qualitative study consisted of in-depth, retrospective interviews with participants over the age of 18 who experienced child sexual abuse. Through narrative analysis, study findings shed light on three overall findings: the perception of memories, the perception of grooming, and the perception of the lived lives of child sexual abuse survivors. Findings suggest that the narratives elicited from the participants included current views but also past experiences and anticipation about the future, including individual and societal levels of meaning. These narratives are furthermore entangled and inexorably linked - temporally, culturally, generationally, materially, and emotionally - and the results are thus presented from a holistic perspective. Study findings help explain the complex dimensions concerning the lived experiences of child sexual abuse. As such, this research speaks to the field of social and health care practitioners working with children and families facing the complex phenomenon of child sexual abuse.

这项定性研究包括对 18 岁以上经历过儿童性虐待的参与者进行深入的回顾性访谈。通过叙事分析,研究结果揭示了三个总体结论:对记忆的感知、对诱导的感知以及对儿童性虐待幸存者生活的感知。研究结果表明,从参与者那里获得的叙述既包括当前的观点,也包括过去的经历和对未来的预期,包括个人和社会层面的意义。此外,这些叙事在时间、文化、代际、物质和情感等方面相互纠缠、不可分割地联系在一起,因此研究结果是从一个整体的角度进行阐述的。研究结果有助于解释有关儿童性虐待生活经历的复杂层面。因此,这项研究对与面临儿童性虐待这一复杂现象的儿童和家庭打交道的社会和医疗从业人员来说,具有重要意义。
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引用次数: 0
The Effects of Stigma: Older Persons and Medicinal Cannabis. 污名化的影响:老年人与药用大麻》。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-07-01 Epub Date: 2024-02-02 DOI: 10.1177/10497323241227419
Sherry Dahlke, Jeffrey I Butler, Kathleen F Hunter, Madeline Toubiana, Maya R Kalogirou, Shovana Shrestha, Rashmi Devkota, Joanna Law, Melissa Scheuerman

Cannabis has long been stigmatized as an illicit drug. Since legalization in Canada for both medical and recreational purposes, older adults' cannabis consumption has increased more than any other age group. Yet, it is unclear how the normalization of cannabis has impacted perceptions of stigma for older adults consuming cannabis medicinally. Qualitative description was used to elucidate the experiences of older Canadians aged 60+ related to stigma and their consumption of cannabis for medicinal purposes. Data collection involved semi-structured interviews. Data analysis examined how participants managed stigma related to cannabis use. Perceived stigma was evident in many participants' descriptions of their perceptions of cannabis in the past and present, and influenced how they accessed and consumed cannabis and their comfort in discussing its use with their healthcare providers. Participants employed several distinct strategies for managing stigma-concealing, re-framing, re-focusing, and proselytizing. Findings suggest that while medical cannabis consumption is becoming increasingly normalized among older adults, stigma related to cannabis persists and continues to shape older adults' experiences. A culture shift needs to occur among healthcare providers so that they are educated about cannabis and willing to discuss the possibilities of medicinal cannabis consumption with older adults. Otherwise, older adults may seek advice from recreational or other non-medical sources. Healthcare providers require education about the use of medical cannabis, so they can better advise older adults regarding its consumption for medicinal purposes.

长期以来,大麻一直被视为非法药物。自加拿大将大麻合法化用于医疗和娱乐目的以来,老年人大麻消费量的增长超过了其他任何年龄组。然而,目前还不清楚大麻的正常化对医用大麻消费老年人的耻辱感有何影响。本研究采用定性描述的方法,以阐明 60 岁以上加拿大老年人与耻辱感及其药用大麻消费有关的经历。数据收集包括半结构式访谈。数据分析研究了参与者如何处理与使用大麻有关的耻辱感。在许多参与者描述他们过去和现在对大麻的看法时,明显感觉到了耻辱感,这影响了他们获取和消费大麻的方式,也影响了他们与医疗服务提供者讨论大麻使用时的舒适度。参与者采用了几种不同的策略来管理耻辱感--隐瞒、重新构思、重新聚焦和改信他教。研究结果表明,虽然医用大麻消费在老年人中日益正常化,但与大麻有关的耻辱感依然存在,并继续影响着老年人的经历。医疗保健提供者需要进行文化转变,使他们了解大麻并愿意与老年人讨论医用大麻消费的可能性。否则,老年人可能会从娱乐或其他非医疗渠道寻求建议。医疗服务提供者需要接受有关使用医用大麻的教育,这样他们才能更好地为老年人提供有关医用大麻消费的建议。
{"title":"The Effects of Stigma: Older Persons and Medicinal Cannabis.","authors":"Sherry Dahlke, Jeffrey I Butler, Kathleen F Hunter, Madeline Toubiana, Maya R Kalogirou, Shovana Shrestha, Rashmi Devkota, Joanna Law, Melissa Scheuerman","doi":"10.1177/10497323241227419","DOIUrl":"10.1177/10497323241227419","url":null,"abstract":"<p><p>Cannabis has long been stigmatized as an illicit drug. Since legalization in Canada for both medical and recreational purposes, older adults' cannabis consumption has increased more than any other age group. Yet, it is unclear how the normalization of cannabis has impacted perceptions of stigma for older adults consuming cannabis medicinally. Qualitative description was used to elucidate the experiences of older Canadians aged 60+ related to stigma and their consumption of cannabis for medicinal purposes. Data collection involved semi-structured interviews. Data analysis examined how participants managed stigma related to cannabis use. Perceived stigma was evident in many participants' descriptions of their perceptions of cannabis in the past and present, and influenced how they accessed and consumed cannabis and their comfort in discussing its use with their healthcare providers. Participants employed several distinct strategies for managing stigma-concealing, re-framing, re-focusing, and proselytizing. Findings suggest that while medical cannabis consumption is becoming increasingly normalized among older adults, stigma related to cannabis persists and continues to shape older adults' experiences. A culture shift needs to occur among healthcare providers so that they are educated about cannabis and willing to discuss the possibilities of medicinal cannabis consumption with older adults. Otherwise, older adults may seek advice from recreational or other non-medical sources. Healthcare providers require education about the use of medical cannabis, so they can better advise older adults regarding its consumption for medicinal purposes.</p>","PeriodicalId":48437,"journal":{"name":"Qualitative Health Research","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323436/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139673319","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Alongside: Exploring the Meaningfulness of Significant Moments in Others' Lives Through Observation and Interview. 并肩作战:通过观察和访谈探索他人生活中重要时刻的意义。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-07-01 Epub Date: 2023-12-22 DOI: 10.1177/10497323231210495
Malene Beck, Bente Martinsen, Malene Missel, Charlotte Simony, Eileen Engelke, Michael van Manen

How do we explore the meaningfulness of others' experiences? What means do we have to access their experiencing of the world? How do we express our understandings of others' experiences of body and place without reducing them to objectification? In this methodological paper, we reflect on how we can gain valuable insights into the lived experiences of others through research activities that are conducted 'alongside' participants. Phenomenological concepts of intentionality and embodiment are considered as we draw on an empirical example of exploring the experiences of hospitalized patients with neurological diseases through observations and interviews. The aim is to unfold alongside as an epistemological stance to explore the meaning of another's lifeworld. We strive to show that personal presence and engagement within this approach contains relational, existential, and aesthetic dimensions worth considering.

我们如何探索他人经验的意义?我们有什么方法来获取他们对世界的体验?我们如何表达对他人身体和地点体验的理解,而不将其客观化?在这篇方法论论文中,我们将思考如何通过 "与 "参与者 "共同 "开展的研究活动,获得对他人生活经验的宝贵见解。我们借鉴了一个通过观察和访谈探索住院神经疾病患者经历的实证案例,并对意向性和体现的现象学概念进行了思考。我们的目的是将 "并肩 "作为一种认识论立场来展开,以探索他人生活世界的意义。我们努力表明,在这种方法中,个人的在场和参与包含了值得考虑的关系、存在和美学维度。
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引用次数: 0
Cosmetic Medical Tourists' Use of Online Support Communities: Sharing Information, Reciprocity, and Enduring Relationships. 美容医疗旅游者对在线支持社区的使用:共享信息、互惠互利和持久关系。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-07-01 Epub Date: 2024-01-16 DOI: 10.1177/10497323231219939
Rowena Forsyth, Tushar Prasad

Cosmetic procedures are amongst the most popular procedures sought after by medical tourists. Cosmetic medical tourists utilise numerous sources of information when planning their trips including, where available, discussing their decision with previous medical tourists. Current research on online support communities has investigated the interactions of patients with various health conditions with online support; however, limited research exists on cosmetic medical tourists' participation in online support communities. Here we report findings from our qualitative interview study of Australian cosmetic medical tourists. We found that many of our participants experienced stigma regarding their intention to receive cosmetic procedures and to travel overseas from within their local social networks. Participating in online communities (Facebook groups) enabled them to access information and support from other cosmetic medical tourists. Through using public posting and messaging functionality of the communities, they performed two distinct roles in the groups that parallel the temporal transitions of their journeys: they were information and support seekers pre-surgery and information and support providers post-surgery. The reciprocity they practiced in the provider role occurred due to their desire to 'pay forward' the support they had received from others pre-surgery. This role was performed as a collective, community-based reciprocity rather than a direct mutual exchange. Some participants also transitioned their online relationships into enduing offline friendships demonstrating how online interactions may become enmeshed with broader social networks.

美容手术是医疗游客最热衷的手术之一。医疗美容游客在计划行程时会利用许多信息来源,包括在可能的情况下与之前的医疗游客讨论他们的决定。目前有关在线支持社区的研究调查了各种健康状况的患者与在线支持的互动情况;然而,有关医疗美容游客参与在线支持社区的研究却十分有限。在此,我们将报告对澳大利亚美容医疗游客的定性访谈研究结果。我们发现,许多参与者在其本地社交网络中对其接受美容手术和出国旅游的意向感到耻辱。参与在线社区(Facebook 群组)使他们能够从其他美容医疗游客那里获得信息和支持。通过使用社区的公开发帖和信息传递功能,她们在群组中扮演了两个不同的角色,这与她们旅程中的时间转换是平行的:她们是手术前的信息和支持寻求者,也是手术后的信息和支持提供者。他们在提供者的角色中实行互惠,这是因为他们希望 "回报 "手术前从他人那里获得的支持。这种角色是一种集体的、基于社区的互惠,而不是直接的相互交流。一些参与者还将他们的线上关系转变为持久的线下友谊,这表明了线上互动是如何与更广泛的社会网络结合在一起的。
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引用次数: 0
A Pianist's Technique Rehabilitation After Post-Traumatic Stress: An Autoethnographic Study. 创伤后应激反应后钢琴家的技巧康复:自述研究。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-07-01 Epub Date: 2024-01-22 DOI: 10.1177/10497323241226565
Carla Lewis, Liesl van der Merwe

Individuals suffering from post-traumatic stress disorder (PTSD) have access to a number of sources detailing the neuropsychological effects and influence of PTSD on their day-to-day lives. While the information on the effects and influence of PTSD may be helpful in understanding the scope of the disorder, there is a lack of knowledge on how to rehabilitate musicians, specifically pianists, who experience these effects. PTSD is especially detrimental to a pianist's abilities, and consequently, without concentrated rehabilitation strategies designed to combat the effects of PTSD, pianists suffering from PTSD may forfeit professional opportunities resulting in loss of livelihood and income. After the first author's experience with PTSD, she suffered from the same effects frequently described in the literature. Through personal journalling, informed music teaching, and self-reflection, she aimed to discover whether musical rehabilitation was possible.

患有创伤后应激障碍(PTSD)的人可以通过许多渠道详细了解创伤后应激障碍对神经心理学的影响以及对日常生活的影响。虽然有关创伤后应激障碍的影响和作用的信息可能有助于了解这种疾病的范围,但对于如何帮助音乐家(尤其是钢琴家)康复却缺乏了解。创伤后应激障碍对钢琴家的能力尤其有害,因此,如果不采取集中的康复策略来消除创伤后应激障碍的影响,患有创伤后应激障碍的钢琴家可能会丧失职业机会,从而失去生计和收入。第一位作者在经历了创伤后应激障碍之后,也受到了文献中经常描述的同样影响。通过个人日志、有根据的音乐教学和自我反思,她旨在探索音乐康复是否可能。
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引用次数: 0
Learning to Communicate: A Photovoice Study With Intensive Care Residents During Night Shifts in the Intensive Care Unit. 学会沟通:在重症监护室夜班期间与重症监护住院医师进行的摄影选择研究。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-07-01 Epub Date: 2024-01-18 DOI: 10.1177/10497323231222388
Diana Quintero, Natalia Reinoso Chávez N, Juliana Vallejo

This study explored the learning experiences of intensive care residents in an intensive care unit (ICU) during night shifts and the development of communication skills in this community of practice. This action research qualitative study used the photovoice method in four workshops. A group of nine residents shared their learning experiences and collectively analyzed, built, and presented proposals to improve residents' communication skills in the community of practice in which they become intensivists. Participatory thematic analysis was conducted. Students concluded that night shifts in the ICU offered a perfect situational learning environment for communication with one-on-one resident-teacher relationships, less administrative work, and more resident responsibility, improving intensivist identity. Role models, reflective thinking, and teamwork are essential for fostering communication skills among intensivist community members and are all trainable. The results and student suggestions were presented to teachers and decision-makers in the clinic. These photovoice strategies developed students' abilities to share their critical views and suggestions with decision-makers for subsequent implementation, enhancing their confidence in their learning process, strengthening trust-based relationships with teachers, and improving future intensivists' practice communities.

本研究探讨了重症监护室(ICU)住院医师在夜班期间的学习经历,以及在这一实践社区中沟通技能的发展情况。这项行动研究定性研究在四个工作坊中使用了摄影选言法。由九名住院医师组成的小组分享了他们的学习经验,并集体分析、构建和提出了改善住院医师在实践社区中沟通技能的建议,他们在其中成为了重症监护医师。进行了参与式主题分析。学生们得出的结论是,重症监护室的夜班为沟通提供了一个完美的情景学习环境,一对一的住院医师-教师关系、较少的行政工作和更多的住院医师责任,提高了重症监护医师的身份认同。榜样、反思性思维和团队合作对于培养重症监护社区成员的沟通技能至关重要,而且都是可以训练的。研究结果和学生建议已提交给诊所的教师和决策者。这些 "摄影选言 "策略培养了学生的能力,使他们能够与决策者分享自己的批评意见和建议,并在随后的实施过程中加以落实,从而增强了他们对学习过程的信心,加强了与教师之间的信任关系,并改善了未来的重症监护医师实践社区。
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引用次数: 0
Mothering a Child With Complexity and Rarity: A Narrative Inquiry Exploring Prader-Willi Syndrome. 复杂罕见儿童的母亲:探索普拉德-威利综合症的叙事调查。
IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Pub Date : 2024-07-01 Epub Date: 2024-01-28 DOI: 10.1177/10497323231225412
Genevieve Currie, Andrew Estefan, Vera Caine

Daily experiences of mothers caring for children with Prader-Willi syndrome (PWS) are largely unknown and unvoiced. Knowledge of PWS has generally focused on pathology of the disorder. This emphasis overlooks the challenging moments of everyday life caring for children with PWS. Storied accounts of mothers caring for children with PWS offer expanded narratives to medicalized descriptions of experience. An understanding of everyday challenges in managing physical and mental health issues of PWS including hyperphagia and anxiety may create shifts in social and clinical perspectives. This understanding could improve practices in health and social care for families with PWS. This narrative inquiry studied everyday experience using storied accounts. Participants were mothers caring for children aged 3-17 years with genetically confirmed PWS who were experiencing hyperphagia. Four participants were recruited, and each interviewed 8-12 times over 12 months. Field texts and narrative accounts were co-composed through a collaborative process of analysis. Engaging with participants' day-to-day experiences offered insights into their work of nurturing, caring, and contributing to the care of a child with PWS. Narrative threads focused on complexity and rarity and include the desire to be normal, how ordinary becomes extraordinary, isolation, behaviors and normative standards, and alternative stories of mothering. Recommendations for practice and policy include (a) challenges of mothering a child with complexity, (b) moving beyond functionality and impairment to participation and quality of life, (c) re-storying narratives and supports for families, and (d) engaging with mothers to determine care priorities.

照顾普拉德-威利综合症(PWS)患儿的母亲们的日常经历在很大程度上不为人所知,也没有人表达过她们的心声。人们对 PWS 的了解通常集中在该疾病的病理学方面。这一重点忽略了日常生活中照顾普氏综合症患儿的挑战性时刻。母亲们照顾患有 PWS 儿童的故事为医学化的经验描述提供了更多的叙事方式。了解在处理 PWS 身心健康问题(包括吞咽过度和焦虑)时所面临的日常挑战,可能会改变社会和临床观点。这种理解可以改善 PWS 患者家庭的医疗和社会护理实践。这项叙事调查使用故事性叙述对日常经验进行了研究。参与者是照顾 3-17 岁经基因证实患有 PWS 并出现吞咽过度的儿童的母亲。共招募了四名参与者,每人在 12 个月内接受了 8-12 次访谈。通过合作分析过程,共同撰写了现场文本和叙事叙述。通过参与参与者的日常经历,我们可以深入了解他们的工作,即培养、照顾和促进对患有 PWS 儿童的护理。叙事线索集中在复杂性和稀有性上,包括对正常的渴望、平凡如何变得不平凡、孤立、行为和规范标准,以及另类的母亲故事。对实践和政策的建议包括:(a) 作为复杂性儿童的母亲所面临的挑战;(b) 超越功能性和损伤,提高参与度和生活质量;(c) 重新讲述故事并为家庭提供支持;(d) 与母亲一起确定护理的优先事项。
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引用次数: 0
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Qualitative Health Research
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