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Video recording as a data collection method in vulnerable populations - methodological and ethical considerations 录像作为弱势群体的数据收集方法——方法学和伦理考虑
Pub Date : 2025-12-01 Epub Date: 2025-09-22 DOI: 10.1016/j.pecinn.2025.100432
Marte-Marie Wallander Karlsen , Kari Sørensen , Berit Hofset Larsen , Lena Günterberg Heyn , Jennifer Gerwing

Introduction

Video recording vulnerable situations in healthcare practice raises ethical challenges that require addressing throughout the research process. Such challenges are linked to protecting research participants and assessing when and how using video recordings is appropriate.

Aim

This article aims to present methodological and ethical considerations inherent in video recording vulnerable participants and to offer future researchers concrete guidance and inspiration as to how they might assess these aspects of their own planned video research.

Results and discussion

As a group of researchers who have used video recordings to collect data of patients in vulnerable situations, we reflect upon our own methodological and ethical choices against the backdrop of other research studies and ethical guidelines.

Conclusion

Video recordings provide a unique opportunity to observe human interaction and to understand more about how we relate to each other. This article contributes to knowledge regarding empirically and ethically sound practice. We have demonstrated how methodological and ethical considerations are intertwined and should be treated as such.

Innovation

There are no existing guidelines or tools specifically for conducting and reporting qualitative studies using video recording that link the ethical considerations to the methodological choices. This article could provide a point of departure for establishing a reflective tool.
视频记录医疗保健实践中的脆弱情况提出了需要在整个研究过程中解决的伦理挑战。这些挑战与保护研究参与者以及评估何时以及如何使用视频记录是适当的有关。本文旨在介绍视频记录弱势参与者所固有的方法和伦理考虑,并为未来的研究人员提供具体的指导和灵感,以便他们如何评估自己计划的视频研究的这些方面。作为一组使用视频记录来收集弱势患者数据的研究人员,我们在其他研究和伦理准则的背景下反思我们自己的方法和伦理选择。视频记录提供了一个独特的机会来观察人与人之间的互动,并更多地了解我们彼此之间的关系。这篇文章有助于知识关于经验和道德健全的做法。我们已经证明了方法和伦理考虑是如何交织在一起的,应该这样对待。创新没有现有的指导方针或工具专门用于进行和报告使用视频记录的定性研究,将伦理考虑与方法选择联系起来。本文可以为建立一个反思工具提供一个出发点。
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引用次数: 0
Engaged curiosity: “Hot spots” for clinical reasoning in complex patient encounters 激发好奇心:在复杂的病人遭遇中进行临床推理的“热点”
Pub Date : 2025-12-01 Epub Date: 2025-06-06 DOI: 10.1016/j.pecinn.2025.100408
Michael Soh , Dolores Mullikin , Steven J. Durning , Jerusalem Merkebu

Objective

This study explores how, if at all, engaged curiosity - a genuine, emotionally engaged interest in learning more about the complexity of another's particular emotional perspective - emerges in the clinical reasoning process and its relationship with contextual factors and clinical reasoning performance.

Methods

Think-alouds transcripts from nineteen physicians in internal medicine from three military training facilities were thematically analyzed for instances of engaged curiosity and examined through the lens of contextual factors and clinical reasoning performance.

Results

Our findings indicate that engaged curiosity can be likened to placeholders that physicians employ early on to “bookmark” sources of patient concern. These sources, or hot spots, deserve follow up, particularly when cognitive resources are unavailable to “attend” to a deeper understanding of the patient's experience.

Conclusion

Engaged curiosity provides a unique lens for better understanding the relationship between empathy and clinical reasoning and warrants further research on its impact on the patient and their care.

Innovation

Engaged curiosity could serve as a novel way to train physicians to think and engage more empathically with their patients.
目的:本研究探讨了在临床推理过程中,好奇心(一种真正的、情感上的兴趣,想要更多地了解他人特定情感视角的复杂性)是如何出现的,以及它与情境因素和临床推理表现的关系。方法对来自三家军事训练机构的19名内科医生的“大声思考”记录进行主题分析,以确定参与好奇心的实例,并通过语境因素和临床推理表现进行检查。结果:我们的研究结果表明,参与好奇心可以比作医生早期使用的占位符,用于“书签”患者关注的来源。这些来源或热点值得跟进,特别是当认知资源无法“关注”对患者体验的更深入理解时。参与式好奇心为更好地理解共情和临床推理之间的关系提供了一个独特的视角,并值得进一步研究其对患者及其护理的影响。创新激发好奇心可以作为一种新颖的方式来训练医生思考问题,并与病人产生更多的共鸣。
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引用次数: 0
How can community-based organizations be involved in the contraception care pathway for newcomer youth? Results of knowledge translation workshops 社区组织如何参与新移民青年的避孕护理途径?知识翻译研讨会的结果
Pub Date : 2025-12-01 Epub Date: 2025-08-14 DOI: 10.1016/j.pecinn.2025.100422
Zeba Khan , Piper Scott-Fiddler , Sarah Munro

Objective

Despite being a basic right of all individuals, many newcomer youth in Canada face challenges in accessing sexual and reproductive health (SRH), including contraception care. Settlement service providers are a trusted source for newcomers in the community, and we explored their role in supporting equitable access to SRH.

Methods

We conducted an integrated knowledge translation (IKT) intervention involving two workshops and the development of an infographic to explore the barriers and opportunities for settlement service organizations to participate in the SRH care pathway for newcomer youth.

Results

SRH and contraception topics arise when youth access other services, such as violence prevention and mental health programming. Lack of training and resources limits their ability to support youth. Workshop participants expressed interest in training and resources and identified opportunities to strengthen the referral pathways to support youth's access to SRH.

Conclusion

Providing resources and training can bolster settlement service providers' awareness of newcomer youth's SRH needs and improve their capacity to support them with information.

Innovation

Our work identified settlement service providers as important in strengthening the SRH care pathway for newcomer youth. We demonstrated the need and opportunity to reach newcomer youth with SRH information by providing training and resources to settlement service providers.
尽管这是所有人的一项基本权利,但加拿大的许多新移民青年在获得性健康和生殖健康(SRH),包括避孕护理方面面临挑战。安置服务提供者是社区新移民可信赖的来源,我们探讨了他们在支持公平获得性健康和生殖健康方面的作用。方法我们进行了一项综合知识翻译(IKT)干预,包括两个研讨会和信息图表的开发,以探讨安置服务机构参与新移民青年性健康和健康护理途径的障碍和机会。结果:当青年获得其他服务,如暴力预防和心理健康规划时,就会出现ssrh和避孕问题。缺乏培训和资源限制了他们支持青年的能力。工作坊参加者表示对培训和资源感兴趣,并确定了加强转介途径的机会,以支持青少年获得性健康和生殖健康服务。结论提供资源和培训可以增强安置服务提供者对新移民青少年性健康和健康需求的认识,提高其信息支持能力。创新我们的工作确定了安置服务提供者在加强新移民青年的性健康和健康护理途径方面的重要作用。我们通过向安置服务提供者提供培训和资源,证明了向新移民青少年提供性健康与健康信息的必要性和机会。
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引用次数: 0
Developing multi-perspective practice-based evidence theses for breaking bad news in the German pediatric oncology: A participatory group Delphi study 为德国儿科肿瘤学的突发坏消息开发多视角的基于实践的证据论文:一项参与性小组德尔菲研究
Pub Date : 2025-12-01 Epub Date: 2025-06-24 DOI: 10.1016/j.pecinn.2025.100413
Isabel Hamm , Kerstin Dittmer , Frank Vitinius , David Reinert , Marc Hoemberg , Remo Kamm-Thonwart , Rainer Misgeld , Theresia Krieger

Objectives

The study aimed to (1) gain a comprehensive, multi-perspective understanding of the preparation, transmission and follow-up of Breaking Bad News (BBN) in pediatric oncology, and (2) to develop and weigh recommendations for BBN in pediatric oncology.

Methods

A mixed-methods Participatory Group Delphi (PGD) study was conducted to develop recommendations for the preparation, transmission, and follow-up of BBN. Practice-based evidence (PBE) was collected from four groups (N = 14 organizations) with different BBN experiences: (1) patient and family representatives, (2) healthcare providers, (3) psychosocial supporters, and (4) health services researchers.

Results

The PGD process (16 interviews, three focus group discussions and two surveys) resulted in 166 recommendations (preparation: 55; transmission: 45; follow-up: 66).

Conclusion

The PGD approach provided a structured framework for collecting PBE and developing, refining and consolidating recommendations on BBN in pediatric oncology. Involving all affected by BBN was crucial for addressing the complexity of BBN in the recommendations. The mixed-methods design enhanced the reliability and practical applicability of the recommendations.

Innovation

To our knowledge, no prior research in pediatric oncology has systematically integrated existing PBE into a structured set of recommendations in Germany. This study introduces a novel PGD process in this field in Germany, incorporating three key innovations: (1) a participatory methodology ensuring active stakeholder engagement, (2) a uniquely diverse expert panel including those affected by pediatric cancer, and (3) a systematic, iterative recommendation development approach rooted in PBE. This methodology results in a Delphi process that diverges significantly from classical approaches, offering a collaborative and structured framework for evidence synthesis.
目的本研究旨在(1)全面、多角度地了解儿科肿瘤学突发坏消息(Breaking Bad News, BBN)的准备、传播和随访;(2)制定和权衡儿科肿瘤学中BBN的建议。方法采用混合方法参与组德尔菲(PGD)研究,对BBN的制备、传播和随访提出建议。基于实践的证据(PBE)来自四组(N = 14个组织),他们具有不同的BBN经验:(1)患者和家属代表,(2)医疗保健提供者,(3)社会心理支持者,(4)卫生服务研究人员。PGD过程(16次访谈,3次焦点小组讨论和2次调查)产生166条建议(准备:55;传输:45;追问:66)。结论PGD方法为收集PBE和制定、完善和巩固儿科肿瘤学BBN建议提供了一个结构化框架。让所有受BBN影响的人参与进来,对于在建议中处理BBN的复杂性至关重要。混合方法的设计提高了建议的可靠性和实用性。据我们所知,在德国还没有儿科肿瘤学的研究将现有的PBE系统地整合到一套结构化的建议中。本研究在德国该领域引入了一种新颖的PGD流程,包括三个关键创新:(1)确保利益相关者积极参与的参与式方法,(2)包括儿童癌症患者在内的独特多样化专家小组,以及(3)基于PBE的系统,迭代的建议开发方法。这种方法产生的德尔菲过程与经典方法有很大的不同,为证据合成提供了一个协作和结构化的框架。
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引用次数: 0
Development and acceptability testing of a tracheostomy decision support video for parents 父母气管切开术决策支持视频的开发和可接受性测试
Pub Date : 2025-12-01 Epub Date: 2025-06-24 DOI: 10.1016/j.pecinn.2025.100412
Stephanie K. Kukora , Kerry Ryan , Haoyang Yan , Rachel Clarke , Cynthia Arslanian-Engoren , Kenneth Pituch

Objective

To develop a clinical, bedside intervention with peer parent narratives to help parents understand the shared decision-making (SDM) process, their role in the decision, and other parents' considerations in this context.

Patient involvement

To ensure that the intervention reflected parents' needs, we identified eight parents who had faced a tracheostomy decision for their child and were willing to talk about their experiences on a video recording. Half of the parents had chosen tracheostomy; some children of parents making either choice had died. We included parents of diverse racial backgrounds whose children had different diagnoses. Parent interviews, along with an explanation of SDM for parents, were edited into a 17-min video guided by iterative feedback from parents and clinicians. Additional parents of children with tracheostomies then viewed the video and shared perceptions about acceptability.

Methods

After an iterative process of developing the video in partnership with parents, we piloted the video with 18 parents in 16 online interviews (two were couples) who were not part of video development but had faced a tracheostomy decision for their child within the last three years. Participants were asked about their experiences, viewed the video, and provided verbal feedback and reflection on the acceptability of the video and its anticipated clinical use. Interviews were transcribed and qualitatively analyzed, focusing on feedback.

Results

Parents who viewed the video provided generally favorable feedback, describing the video as “helpful,” and appreciating the diversity of the cases represented and the perspectives offered. They felt that it could empower parents to ask questions and voice their opinions to the medical team. Parents noted feeling a connection to the emotions expressed by the parents in the video and felt it would help parents facing these decisions to feel less alone.

Discussion/practical value

Video education focusing on parents' perspectives may help support the SDM process for pediatric tracheostomy and complement other strategies to support parent engagement. Similar approaches may be valuable in explaining SDM to patients or families facing other serious decisions.
目的通过同伴父母的叙述,开发一种临床、床边干预方法,帮助父母了解共同决策(SDM)过程、他们在决策中的作用以及在此背景下其他父母的考虑。患者参与:为了确保干预反映了家长的需求,我们找到了8位父母,他们都曾为孩子做过气管切开术的决定,并愿意在视频中谈论他们的经历。半数家长选择气管切开术;有些父母在两者中任选其一的孩子已经死亡。我们包括了不同种族背景的父母,他们的孩子有不同的诊断。在家长和临床医生反复反馈的指导下,家长访谈以及对家长SDM的解释被编辑成一个17分钟的视频。随后,接受气管切开术的孩子的其他家长观看了视频,并分享了对可接受性的看法。方法:在与父母合作开发视频的反复过程之后,我们在16次在线访谈中对18位父母(其中两对是夫妇)进行了视频试点,这些父母不参与视频开发,但在过去三年内为他们的孩子面临气管切开术的决定。参与者被问及他们的经历,观看视频,并就视频的可接受性及其预期的临床应用提供口头反馈和反思。采访记录和定性分析,重点是反馈。结果看了视频的家长给出了普遍好评的反馈,称视频“有帮助”,并对所代表的案例的多样性和提供的观点表示赞赏。他们认为这可以让父母向医疗团队提出问题并发表意见。家长们注意到,他们与视频中父母们表达的情绪有一种联系,并认为这会帮助父母们在面对这些决定时感到不那么孤独。讨论/实用价值侧重于家长观点的视频教育可能有助于支持儿童气管切开术的SDM过程,并补充其他支持家长参与的策略。在向面临其他重大决定的患者或家庭解释SDM时,类似的方法可能很有价值。
{"title":"Development and acceptability testing of a tracheostomy decision support video for parents","authors":"Stephanie K. Kukora ,&nbsp;Kerry Ryan ,&nbsp;Haoyang Yan ,&nbsp;Rachel Clarke ,&nbsp;Cynthia Arslanian-Engoren ,&nbsp;Kenneth Pituch","doi":"10.1016/j.pecinn.2025.100412","DOIUrl":"10.1016/j.pecinn.2025.100412","url":null,"abstract":"<div><h3>Objective</h3><div>To develop a clinical, bedside intervention with peer parent narratives to help parents understand the shared decision-making (SDM) process, their role in the decision, and other parents' considerations in this context.</div></div><div><h3>Patient involvement</h3><div>To ensure that the intervention reflected parents' needs, we identified eight parents who had faced a tracheostomy decision for their child and were willing to talk about their experiences on a video recording. Half of the parents had chosen tracheostomy; some children of parents making either choice had died. We included parents of diverse racial backgrounds whose children had different diagnoses. Parent interviews, along with an explanation of SDM for parents, were edited into a 17-min video guided by iterative feedback from parents and clinicians. Additional parents of children with tracheostomies then viewed the video and shared perceptions about acceptability.</div></div><div><h3>Methods</h3><div>After an iterative process of developing the video in partnership with parents, we piloted the video with 18 parents in 16 online interviews (two were couples) who were not part of video development but had faced a tracheostomy decision for their child within the last three years. Participants were asked about their experiences, viewed the video, and provided verbal feedback and reflection on the acceptability of the video and its anticipated clinical use. Interviews were transcribed and qualitatively analyzed, focusing on feedback.</div></div><div><h3>Results</h3><div>Parents who viewed the video provided generally favorable feedback, describing the video as “helpful,” and appreciating the diversity of the cases represented and the perspectives offered. They felt that it could empower parents to ask questions and voice their opinions to the medical team. Parents noted feeling a connection to the emotions expressed by the parents in the video and felt it would help parents facing these decisions to feel less alone.</div></div><div><h3>Discussion/practical value</h3><div>Video education focusing on parents' perspectives may help support the SDM process for pediatric tracheostomy and complement other strategies to support parent engagement. Similar approaches may be valuable in explaining SDM to patients or families facing other serious decisions.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100412"},"PeriodicalIF":0.0,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144534829","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The association between attitude, perceived norm, and perceived behavioral control with the provision of Clinical Work-Integrating Care: A reasoned action approach 态度、知觉规范和知觉行为控制与临床工作整合护理之间的关系:理性行动方法
Pub Date : 2025-12-01 Epub Date: 2025-06-27 DOI: 10.1016/j.pecinn.2025.100416
Authors: Lana Kluit , Annechien Beumer , Coen A.M. van Bennekom , Angela G.E.M. de Boer , Astrid de Wind

Background

Clinical Work-Integrating Care (CWIC) brings important attention to issues emerging from the interrelationship between health and work. Yet, for various reasons, CWIC is not routinely delivered in clinical healthcare. This study focuses on why medical specialists do or do not provide CWIC, applying a reasoned action approach.

Objective

To examine the associations between attitude, perceived norm, and perceived behavioral control with the provision of CWIC.

Methods

A cross-sectional survey was distributed to Dutch medical specialists. Multivariable regression analysis was used to investigate the associations between attitude, perceived norm, and perceived behavioral control on the ability to provide CWIC with the frequency of actual CWIC provision.

Results

In total, 160 medical specialists completed the survey. The sample consisted of 12 surgical specialists (8 %), 113 non-surgical specialists (71 %), and 35 rehabilitation specialists (22 %). After adjustment for confounders, a favorable attitude was significantly associated with providing CWIC (p < .01), while perceived norm and perceived control were not (p = .74 and p = .85, respectively).

Conclusions

Medical specialists who expressed a favorable attitude towards addressing work during consultations were more likely to provide CWIC. Thus, addressing specialists' attitudes is an important element to implementing CWIC.
临床工作整合护理(CWIC)引起了人们对健康与工作相互关系中出现的问题的重视。然而,由于各种原因,在临床医疗保健中没有常规提供CWIC。本研究的重点是为什么医学专家提供或不提供CWIC,采用合理的行动方法。目的探讨态度、知觉规范和知觉行为控制与ccic的关系。方法对荷兰医学专家进行横断面调查。采用多变量回归分析探讨态度、知觉规范和知觉行为控制对实际提供CWIC的频率与提供CWIC能力的关系。结果共有160名医学专家完成调查。样本包括12名外科专家(8%),113名非外科专家(71%)和35名康复专家(22%)。调整混杂因素后,良好的态度与提供ccic显著相关(p <;知觉规范和知觉控制差异无统计学意义(p = 0.74和p = 0.85)。结论会诊时对解决工作态度较好的专科医师更有可能提供ccic。因此,解决专家的态度是实施ccic的一个重要因素。
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引用次数: 0
Hidden misinformation in YouTube short videos on syphilis: A mixed-methods study YouTube上关于梅毒的短视频中隐藏的错误信息:一项混合方法研究
Pub Date : 2025-12-01 Epub Date: 2025-08-29 DOI: 10.1016/j.pecinn.2025.100428
Emi Furukawa , Tsuyoshi Okuhara , Shinya Ito , Ritsuko Shirabe , Hiroko Okada , Takahiro Kiuchi

Objective

YouTube short videos constitute a key informational resource for individuals at high risk of sexually transmitted infections (STIs). We conducted a quality assessment of short videos about syphilis intended for the general public in Japan.

Methods

In October 2024, a comprehensive sample of YouTube short videos on syphilis was retrieved using keywords frequently used to search for information on the disease. mDISCERN criteria were employed to assess the reliability of the information in the 72 videos selected for analysis. Reflexive thematic analysis was used to qualitatively examine misinformation embedded within the videos.

Results

The mean mDISCERN score of the videos was 2.0 (SD 0.9) and 80 % of the videos did not meet the reliability criteria. One in five videos potentially hindered audience engagement in health behaviors by inducing fear of the disease, reinforcing stigma and insensitivity toward high-risk individuals, and punitively portraying those infected. Some of these messages originated from healthcare professionals, indicating their potential role in reinforcing such biases.

Conclusion

YouTube short videos can support syphilis awareness and prevention, but difficulties with information reliability and lack of quality are common. Stigmatizing content may hinder health-seeking behaviors. Enhancing the quality and sensitivity of messages, particularly those from healthcare professionals, is essential to maximize their public health impact.

Innovation

This study is among the first to analyze YouTube short videos about STIs, combining qualitative and quantitative methods to assess misinformation.
目的youtube短视频是性传播感染高危人群的重要信息资源。我们对面向日本公众的梅毒短视频进行了质量评估。方法于2024年10月,使用搜索梅毒相关信息的常用关键词,对YouTube上有关梅毒的短视频进行全面检索。mDISCERN标准被用来评估信息的可靠性,在72个视频选择进行分析。反身性专题分析用于定性地检查视频中嵌入的错误信息。结果视频的mDISCERN评分平均值为2.0 (SD 0.9), 80%的视频不符合信度标准。五分之一的视频可能会通过诱导对疾病的恐惧,加强对高危人群的耻辱和不敏感以及惩罚性地描绘感染者来阻碍观众参与健康行为。其中一些信息来自医疗保健专业人员,表明他们在强化这种偏见方面的潜在作用。结论youtube短视频对宣传梅毒、预防梅毒有一定的支持作用,但存在信息可靠性差、质量差等问题。污名化的内容可能会阻碍寻求健康的行为。提高信息的质量和敏感性,特别是卫生保健专业人员的信息,对于最大限度地发挥其公共卫生影响至关重要。创新:这项研究首次分析了YouTube上关于性传播感染的短视频,结合定性和定量方法来评估错误信息。
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引用次数: 0
Communication quality between parents and siblings of children with chronic disorders 慢性疾病患儿父母与兄弟姐妹之间的沟通质量
Pub Date : 2025-12-01 Epub Date: 2025-07-08 DOI: 10.1016/j.pecinn.2025.100419
Caitlin M. Prentice , Anna Aanesen , Amalie Kirkedelen Syverstad , Torun M. Vatne , Krister W. Fjermestad

Objective

This study examines parent-sibling communication during a manual-based group intervention (SIBS) that aims to improve communication quality and well-being for siblings of children with a chronic disorder diagnosis.

Methods

Audio recordings and transcripts of 20 parent-sibling conversations were analyzed using the manual-based tool Verona Coding Definition of Emotional Sequences (VR-CoDES). We measured siblings' negative expressions and parental responses, focusing on how parents applied the SIBS target behaviours of listening, exploring and validating responses.

Results

Siblings raised topics such as heritability of the chronic disorder, differential treatment, and instances of violence and temper tantrums. Siblings' negative expressions were 53 % cues (implicit expressions) and 47 % concerns (explicit expressions). Parents provided space in 74 % of the responses to cues and concerns, meaning they gave space for further disclosure. Within these responses, parents applied the SIBS target behaviours, including exploration (59 %), validation (33 %), and listening (8 %).

Conclusion

Parents mainly provided space and used a warm tone when responding to siblings in the SIBS sessions. Responses included a higher proportion of validation responses and a lower proportion of listening responses compared with previous studies.

Innovation

Parents and siblings of children with chronic disorders face unique challenges that can negatively impact the quality of parent-sibling communication and psychological adjustment in siblings. This study contributes new insight into how parents and siblings communicate in an intervention setting, and how characteristics of the intervention may influence the quality of this communication.
目的本研究旨在通过基于手工的群体干预(SIBS)来改善慢性障碍患儿兄弟姐妹的沟通质量和幸福感。方法采用基于手册的Verona情绪序列编码定义(VR-CoDES)工具对20份父母-兄弟对话录音和文本进行分析。我们测量了兄弟姐妹的消极表达和父母的反应,重点关注父母如何应用SIBS的目标行为,即倾听、探索和验证反应。结果:兄弟姐妹们提出了诸如慢性疾病的遗传性、差别待遇、暴力和发脾气等话题。兄弟姐妹的消极表达有53%是暗示(隐性表达),47%是担忧(显性表达)。对于暗示和担忧,家长在74%的回复中提供了空间,这意味着他们给了进一步披露的空间。在这些回应中,家长应用了SIBS的目标行为,包括探索(59%)、验证(33%)和倾听(8%)。结论在SIBS会话中,家长主要提供空间和使用温暖的语气回应兄弟姐妹。与以往的研究相比,验证性回应的比例更高,而倾听性回应的比例更低。创新慢性疾病儿童的父母和兄弟姐妹面临着独特的挑战,这可能会对父母-兄弟姐妹的沟通质量和兄弟姐妹的心理适应产生负面影响。本研究对父母和兄弟姐妹如何在干预环境下沟通,以及干预的特征如何影响这种沟通的质量提供了新的见解。
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引用次数: 0
When physicians become patients: A podcast series for learning from patient experiences 当医生成为病人:一个从病人经验中学习的播客系列
Pub Date : 2025-12-01 Epub Date: 2025-08-22 DOI: 10.1016/j.pecinn.2025.100423
M.A. van Helvoort , K.J.A. van Dijsseldonk , B. Post
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引用次数: 0
The protective role of HCWs communication for the distress of newly diagnosed people with leukemia and lymphoma 医护人员沟通对新诊断白血病、淋巴瘤患者痛苦的保护作用
Pub Date : 2025-12-01 Epub Date: 2025-10-06 DOI: 10.1016/j.pecinn.2025.100439
Fabio Guolo , Francesca Riccardi , Paola Del Sette , Cecilia Perrone , Paola Minetto , Andrea Todiere , Filippo Ballerini , Carola Riva , Michele Cea , Roberto Massimo Lemoli , Gabriella Biffa , Elena Sarcletti

Objectives

Patients with hematologic malignancies face a unique illness trajectory that contributes to high distress. Physician-patient communication can enhance well-being, therapeutic alliance, and adherence; however, its impact in hematology remains underexplored. We investigate the satisfaction of people with leukemia and lymphoma regarding the communication of healthcare providers and their perceived support, and their effects on distress.

Methods

In this cross-sectional, observational study, 54 individuals with leukemia and lymphoma completed a questionnaire assessing their perceived support, communication, and distress. We conducted correlation and regression analyses to assess how healthcare worker–patient communication and perceived support relate to distress.

Results

We found moderate to high distress in more than 60 % of patients. Main results revealed that distress was related to the perception of having received adequate information from healthcare providers, β = −0.20, p = .046, along with emotional, β = 0.66, p < .001, and practical problems, β = 0.28, p = .006.

Conclusions

Findings highlight healthcare providers' role in reducing distress by addressing patients' informational needs, underscoring the necessity of targeted communication training.

Innovation

This study pioneers evidence in hematology, demonstrating how patient-centered communication and tailored strategies effectively support patients' well-being in unpredictable trajectories.
目的血液学恶性肿瘤患者面临着独特的疾病轨迹,这导致了患者的高度焦虑。医患沟通可以提高幸福感、治疗联盟和依从性;然而,其对血液学的影响仍未得到充分探索。我们调查了白血病和淋巴瘤患者对医疗保健提供者的沟通和他们的感知支持的满意度,以及他们对痛苦的影响。方法在这项横断面观察性研究中,54名白血病和淋巴瘤患者完成了一份问卷,评估他们感知到的支持、沟通和痛苦。我们进行了相关和回归分析,以评估医护人员-患者沟通和感知支持如何与痛苦相关。结果我们发现60%以上的患者有中度到高度的痛苦。主要结果显示,痛苦与从医疗保健提供者那里获得足够信息的感觉有关,β = - 0.20, p = 0.046,以及情感问题,β = 0.66, p < 001,和实际问题,β = 0.28, p = 0.006。结论:研究结果强调了医疗保健提供者通过满足患者的信息需求来减少痛苦的作用,强调了有针对性的沟通培训的必要性。创新:这项研究在血液学领域开创了先机,展示了以患者为中心的沟通和量身定制的策略如何在不可预测的轨迹中有效地支持患者的健康。
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