longitudinal qualitative research

纵向定性研究
  • 文章类型: Journal Article
    本文对三个纵向定性研究得出的方法论挑战和见解进行了分析和讨论,所有这些都是在COVID-19大流行期间在智利进行的,并以各自的设计为中心进行全面的理论-方法反思。这一分析为社会研究中的跨学科讨论做出了重大贡献,特别强调纵向轨迹。首先,我们对社会工作中的三项研究进行了比较分析,利用Saldaña的问题解决纵向研究中的变化和学习。第一项研究探索了研究人员的劳动轨迹,第二个重点是学生的教育轨迹,最后研究了儿童保护系统内社会工作者和家庭之间的治疗联盟轨迹。在此之后,我们深入研究了研究小组在执行这些纵向研究期间做出的方法学决策。这包括对参与者参与的检查,所采用设计的时间定义,以及分析随时间变化的变化过程的最合适的方法工具。这种比较分析的结果揭示了三个纵向研究的独特特征,提供关于如何在其中探索时间维度的见解。我们强调了在纵向定性研究中考虑的关键标准,特别是关于参与者和方法。总之,我们主张在纵向定性方法论领域进行扩展反思,包括设计选择等方面,数据分析方法,信息处理技术的集成,以及保持参与者参与度的策略。
    This paper undertakes an analysis and discussion of the methodological challenges and insights derived from three longitudinal qualitative studies, all conducted in Chile during the COVID-19 pandemic and subject to comprehensive theoretical-methodological reflection processes centred on their respective designs. This analysis makes a significant contribution to interdisciplinary discussions within social research, with a particular emphasis on longitudinal trajectories. First, we present a comparative analysis of three studies in social work, utilising Saldaña\'s questions addressing changes and learning in longitudinal studies. The first study explores the labour trajectories of researchers, the second focuses on the educational trajectories of students, and the last examines therapeutic alliance trajectories between social workers and families within the child protection system. Following this, we delve into the methodological decisions made by the research group during the execution of these longitudinal studies. This encompasses an examination of participant involvement, temporal definitions of the adopted designs, and the most suitable methodological tools for analysing change processes over time. The outcomes of this comparative analysis reveal the distinctive characteristics of the three longitudinal studies, providing insights into how the time dimension is explored within them. We highlight key criteria essential for consideration in longitudinal qualitative research, particularly regarding participants and methodology. In conclusion, we advocate for an expanded reflection within the realm of longitudinal qualitative methodology, encompassing aspects such as design choices, approaches to data analysis, integration of technology in information processing, and strategies for maintaining participant engagement.
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  • 文章类型: Journal Article
    背景:在接受阿片类药物激动剂治疗(OAT)的患者中,停用美沙酮和丁丙诺啡等药物是一个国际现象。OAT药物的最新发展包括丁丙诺啡的储库注射。从定性的角度来看,这些新药物配方停药的潜在情况尚未完全理解。
    方法:数据来自对患者使用长效注射用丁丙诺啡(LAIB)的纵向定性研究,涉及在六个时间点举行的半结构化电话面试。本文的相关数据集包括44份采访成绩单,由8名参与者产生,这些参与者均因终止LAIB处方(在治疗的前12个月期间)而受到影响.分析试图确定与LAIB中止相关的情况,数据进一步位于“证据干预”和相关“关注事项”的框架内。关注事项涉及通过参与和实践“进行”和构建干预的方式,从收件人的角度来看。
    结果:在这项研究中,参与者经历了治疗服务中断LAIB处方或患者主导的治疗选择退出.前者背后的关注事项与定期任命的迟到有关,非处方物质使用或接受监禁判决。与患者开始停药有关的关注事项与影响治疗动机的个人情况有关,副作用(丁丙诺啡),倾向于恢复使用海洛因,或者因为个人治疗目标已经实现。
    结论:影响LAIB终止的各种关注事项表明,这种OAT是复杂和多方面的,既不固定也不稳定,并且不会产生普遍共享的结果。LAIB中断的经历是由广泛的社会因素塑造的,时间和治疗相关的影响,包括患者和治疗提供者之间脱节的治疗联盟。为了最大限度地发挥LAIB的好处,有必要发展有意义的治疗联盟(尽管有政策界限),以便在治疗期间探索关注的问题。
    BACKGROUND: Discontinuation of medications such as methadone and buprenorphine amongst patients receiving opioid agonist treatment (OAT) is an international phenomenon. Recent developments in OAT medication include depot-injections of buprenorphine. Circumstances underlying discontinuation of these new formulations of medication are not fully understood from a qualitative perspective.
    METHODS: Data derive from a longitudinal qualitative study of patients\' experience of long-acting injectable buprenorphine (LAIB), involving semi-structured telephone-interviews held at six-points in time. The relevant dataset for this article consists of 44 interview transcripts, generated from 8 participants who were each affected by discontinuation of LAIB prescriptions (during the first 12-months of treatment). Analyses sought to identify circumstances associated with LAIB discontinuation and data were further situated within a framework of \'evidence making intervention\' and associated \'matters-of-concern\'. Matters-of-concern relate to the ways in which an intervention is \'made\' and constructed through engagement and practice, from the perspective of the recipient.
    RESULTS: In this study, participants experienced either \'discontinuation of LAIB prescriptions by treatment services\' or patient-led \'opt-out\' from treatment. Matters-of-concern underlying the former were associated with late attendance for scheduled appointments, non-prescribed substance use or receiving a custodial sentence. Matters-of-concern relating to patient-initiated discontinuation were associated with personal circumstances that affected treatment motivation, side-effects (of buprenorphine), a preference to resume heroin use, or because individual treatment goals had been achieved.
    CONCLUSIONS: The assorted matters-of-concern that influence discontinuation of LAIB demonstrate that such OAT is complex and multi-faceted, is neither fixed nor stable, and does not generate universally shared outcome. Experiences of LAIB discontinuation are shaped by a wide range of social, temporal and treatment-related effects that include disconnected therapeutic alliance between patient and treatment providers. In order to maximise the benefits of LAIB it is necessary to develop meaningful therapeutic alliances (notwithstanding policy boundaries) to enable exploration of matters-of-concern during treatment.
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  • 文章类型: Journal Article
    学校的室内空气质量问题很普遍,它们会给青少年带来健康问题。然而,以前没有研究过青少年如何理解这种受污染的社会物质环境,或者这些环境提供了什么样的代理。从框架分析的生态心理学角度出发,我们分析了芬兰一所长期存在室内空气问题的学校青少年的纵向焦点小组访谈。我们构建了三个复合的第一人称叙事,反映了不同的体验框架,具有相应的代理形式和变化。我们发现,我们的青少年以非常不同的方式理解相同的社会物质环境及其负担,这个过程使他们能够开发出多种随时间变化的机构。
    Problems with schools\' indoor-air quality are common, and they can cause health problems to adolescents. However, no previous research has examined how adolescents make sense of such contaminated socio-material environments or what kinds of agency those environments afford. Taking an ecological psychology perspective informed by frame analysis, we analysed longitudinal focus group interviews with adolescents in a Finnish school with longstanding indoor-air problems. We constructed three composite first-person narratives that reflected different experiential frames, with corresponding forms and changes of agency. We found that our adolescents made sense of the same socio-material environment and its affordances in very different ways, and this process afforded them to develop many kinds of agency that changed over time.
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  • 文章类型: Journal Article
    背景:有沟通困难的人可能会从使用增强和替代沟通(AAC)中受益。了解和衡量使用AAC的结果是评估设备和服务影响的重要组成部分。结果测量需要反映使用AAC对个人参与日常生活活动能力的影响的变化性质。对应该为AAC装置提供的结果评估提供信息的概念的理解有限。也不是人们对AAC的期望会随着时间的推移而改变。
    目的:通过更多地了解人们对AAC的期望以及这些期望如何随着时间的推移而变化,为AAC患者报告的结果指标的制定提供信息。
    方法:设计了一项纵向定性研究,并在2年内对7名参与者进行了研究。参与者是从英国西南部AAC的区域专家评估服务中招募的。进行了四次半结构化访谈:(1)在AAC评估之前,(2)经过评估,(3)在提供AAC装置之后直接和(4)在提供之后的6至12个月之间。本研究采用了一种基于纵向解释现象学分析原理的原始分析方法,用对话理论透镜应用。这种方法能够将收集到的一系列多模式和具体数据纳入本研究,并允许研究团队在关注时间和背景对经验的影响的同时,在整个队列组中得出突出的主题。
    结果:结果确认并扩展了用于指导分析的三个核心概念:变化;上下文;未来的可能性。还通过跨病例比较确定并说明了AAC对该队列可获得的结果的上下文和时间影响。更深,分析,以及与理论的概念接触,然后应用于数据分析,在研究中提供了方法上的严谨性。结果增强了我们对AAC的人们的希望和期望以及这些随着时间的推移而变化的理解。
    结论:这项定性纵向研究为经历沟通障碍的人的旅程提供了新的见解,以及他们参与时认同感的变化性质,并从使用中学习,AAC。这项研究具有重要意义,因为它关注的是经验的动态性质以及上下文和经验因素如何影响AAC的人们的希望和期望。本文介绍了使用AAC的人的纵向定性研究方法的原始应用,可以在沟通障碍研究领域进一步应用和测试。
    结论:关于这一主题的已知情况我们不知道时间对已经确定的代表AAC重要结果的概念的影响。用于定义AAC结果的现有概念尚未充分概念化以开发患者报告的结果度量。这项研究旨在扩展我们对AAC结果的了解。本文对现有知识的补充本研究通过提出纵向定性研究方法,为交流障碍研究领域的定性调查提供了方法论工具包。它增加了我们对支持AAC结果的概念的理解的深度,并突出了上下文的动态性质以及这如何影响预期的结果。这项工作的潜在或实际临床意义是什么?这项纵向定性研究为获得AAC的经验提供了更广阔的视角。它将使临床医生能够更好地导航影响人们获取AAC设备的体验的上下文和过渡因素。所描述的增强概念还将支持临床对话,这些对话考虑了通信的更广泛方面,以及AAC可以添加到现有的通信工具包中,而不仅仅是获得消息。
    BACKGROUND: People who have communication difficulties may benefit from using augmentative and alternative communication (AAC). Understanding and measuring outcomes from the use of AAC is an important part of evaluating the impact of devices and services. Outcome measurement needs to reflect the changing nature of the impact of using AAC on an individual\'s ability to participate in activities of daily life. There is a limited understanding of the concepts that should inform the evaluation of outcomes from AAC device provision, nor how people\'s expectations from AAC may change over time.
    OBJECTIVE: To inform the development of a patient-reported outcome measure for AAC by understanding more about people\'s expectations from AAC and how these change over time.
    METHODS: A longitudinal qualitative research study was designed and carried out with seven participants over a period of 2 years. Participants were recruited from a regional specialist assessment service for AAC in the south-west of the UK. Four semi-structured interviews were carried out: (1) before assessment for AAC, (2) after assessment, (3) directly after provision of an AAC device and (4) between 6 and 12 months after provision. An original analytic method was used in this study that built on the principles of longitudinal interpretative phenomenology analysis, applied with a dialogic theoretical lens. This approach enabled the inclusion of a range of multimodal and embodied data collected to this study and allowed the research team to draw out salient themes across the cohort group while attending to the influence of time and context on experience.
    RESULTS: The results confirm and extend the three core concepts that were used to guide analysis: changes; contexts; future possibilities. The contextual and temporal influences on outcomes attainable from AAC for this cohort were also identified and illustrated through cross-case comparison. Deeper, analytic, and conceptual engagement with theory, which was then applied to analysis of the data, provided methodological rigour in the study. The results enhance our understanding of people\'s hopes and expectations from AAC and how these change over time.
    CONCLUSIONS: This qualitative longitudinal research study provides new insights into the journeys of people who experience communication disability, and the shifting nature of their sense of identity as they engage with, and learn from using, AAC. The study is significant as it attends to the dynamic nature of experience and how contextual and experiential factors influence people\'s hopes and expectations from AAC. The paper presents an original application of longitudinal qualitative research methodology with people who use AAC which can be further applied and tested in the field of communication disability research.
    CONCLUSIONS: What is already known on this subject We did not know the impact that time has on the concepts that have been identified to represent important outcomes from AAC. The existing concepts used to define outcomes from AAC were not adequately conceptualized to develop a patient-reported outcome measure. This study sought to extend our knowledge about outcomes from AAC. What this paper adds to the existing knowledge This study adds to the methodological toolkit available for qualitative inquiry in the field of communication disability research by presenting a longitudinal qualitative research methodology. It adds depth to our understanding of the concepts that underpin outcomes from AAC and highlights the dynamic nature of contexts and how this influences desired outcomes. What are the potential or actual clinical implications of this work? This longitudinal qualitative research study provides a broader perspective on the experience of getting AAC. It will enable clinicians to better navigate the contextual and transitionary factors that influence people\'s experience of acquiring AAC devices. The enhanced concepts described will also support clinical conversations that consider the wider facets of communication and what AAC can add to existing communicative tool kits beyond getting a message across.
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  • 文章类型: Journal Article
    背景:“患者旅程”的概念在卫生服务研究中很受欢迎。患者旅程提供了以人为中心的医疗保健方法,通常优先考虑主观患者体验,以改善相关的干预形式。本文探讨了使用长效注射用丁丙诺啡(LAIB)作为旅程的阿片类药物使用障碍(OUD)治疗保留的概念化。
    方法:数据来自纵向定性研究,涉及半结构化访谈(在六个时间点举行),每个参与者都是第一次发起LAIB。本文的数据分析仅集中在那些在一年中继续接受LAIB治疗的人(11名参与者)的经验上。对11名参与者进行的64次访谈的框架和主题叙事分析试图确定“保留叙事”,这将表明与LAIB治疗相关的“保留之旅”。
    结果:共同的治疗经验包括三个不同的阶段(退出和分离,转型,和参与度)随着时间的推移以线性和交叉的方式进展。每个阶段都有在给定时间定义治疗经验的特征,但随着治疗的进展而改变。所有11名参与者在三个治疗阶段中的每个阶段都经历了多种特征,并且所有参与者报告在治疗的前12个月中与各自的服务提供商分离。尽管有些人重视后者的分离,大多数人对接触水平的降低不满意。
    结论:LAIB治疗OUD的保留,至少12个月,可以被概念化为一个旅程。这种概念化强调了临床医生和患者在LAIB治疗计划的第一年可能会遇到的好处(和挑战)。以这种方式概念化LAIB治疗的另一个含义是,药物的最佳益处(如参与者所观察到的)在保留旅程的7-12个月中开始出现。
    BACKGROUND: Conceptualisations of the \'patient journey\' are popular within health service research. Patient journeys provide a person-centred approach to health care that typically prioritise subjective patient experience with the aim of improving relevant forms of intervention. This article explores the conceptualisation of retention in treatment for opioid use disorder (OUD) using long-acting injectable buprenorphine (LAIB) as a journey.
    METHODS: Data derive from a longitudinal qualitative study, involving semi-structured interviews (held at six time-points), with participants who each initiated LAIB for the first time. Data analysis for this article focuses exclusively upon the experiences of those who had continued with LAIB treatment throughout one year (11 participants). Framework and thematic narrative analyses of 64 interviews with 11 participants sought to identify \'retention-narratives\' that would indicate a \'retention journey\' associated with LAIB treatment.
    RESULTS: Shared treatment experiences consisted of three distinct phases (Withdrawal and Separation, Transformation, and Engagement) that progressed in a linear and intersecting manner through time. Each phase had features that defined treatment experiences at a given time but changed as treatment progressed. All 11 participants experienced multiple features within each of the three treatment phases and all participants reported separation from their respective service provider throughout the first 12 months of treatment. Although some valued the latter separation, most were dissatisfied by reduced levels of contact.
    CONCLUSIONS: Retention in treatment for OUD with LAIB, for at least 12-months, can be conceptualised as a journey. This conceptualisation emphasises the benefits (and challenges) clinicians and patients may expect to encounter during the first year of a LAIB treatment programme. An added implication of conceptualising LAIB treatment in this manner is that optimal benefits of the medication (as observed by participants) began to emerge during \'months 7-12\' of the retention journey.
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  • 文章类型: Journal Article
    背景:阿片类药物使用障碍(OUD)治疗期间的非处方物质使用(NPSU)是一种公认的现象。使用非处方物质与停止治疗有关,并且在治疗的前几周内可能发生脱落,在从治疗中获益之前。治疗的最新进展包括长效,缓释储库丁丙诺啡注射液。本文重点介绍了丁丙诺啡储库治疗的第一个月的NPSU,解决它发生的频率,使用的物质,和使用的原因。方法:作为纵向定性研究的一部分,对26名开始使用丁丙诺啡的患者进行了70次半结构化访谈(在三个时间点进行)。分析优先考虑内容和框架分析。结果:17/26参与者在治疗的第一个月中的不同时间自我报告NPSU。NPSU通常涉及海洛因,可卡因和一些使用苯二氮卓类药物和/或大麻。参与者使用海洛因的原因与他们对阿片类药物戒断症状的主观描述有关,疼痛的管理,和实验(测试丁丙诺啡的阻滞作用)。海洛因的使用频率通常是偶发的,而不是持续的。参与者将可卡因的使用与兴奋剂渴望和社交联系联系起来,并认为他们使用这种物质很难管理。结论:定性研究中很少检查患者最初接受OUD治疗的情况。这项研究强调了接受新形式治疗的患者中的NPSU仍然是一个挑战。因此,关于治疗目标和NPSU的共同决策(提供者和患者之间)应是实施丁丙诺啡储库治疗方案的核心.
    Background: Non-prescribed substance use (NPSU) during the treatment of opioid use disorder (OUD) is a recognized phenomenon. The use of non-prescribed substances is associated with discontinuing treatment and drop-out can occur within the early weeks of treatment, before benefit from treatment occurs. Recent developments in treatment include long-acting, slow-release depot buprenorphine injections. This article focuses on NPSU during the first month of treatment with depot buprenorphine, addressing the frequency with which it occurs, the substances used, and reasons for use. Methods: 70 semi-structured interviews (held at three time-points) were conducted with 26 patients initiating depot buprenorphine as part of a longitudinal qualitative study. Analysis prioritized content and framework analyses. Findings: 17/26 participants self-reported NPSU at various times during the first month of treatment. NPSU typically involved heroin, crack-cocaine and some use of benzodiazepines and/or cannabis. Participants\' reasons for heroin use were connected to their subjective accounts of opioid withdrawal symptoms, the management of pain, and experimentation (to test the blockade effect of buprenorphine). Frequency of heroin use was typically episodic rather than sustained. Participants associated crack-cocaine use with stimulant-craving and social connections, and considered their use of this substance to be difficult to manage. Conclusions: Patients\' initial engagement with treatment for OUD is rarely examined in qualitative research. This study highlights how NPSU amongst patients receiving new forms of such treatment continues to be a challenge. As such, shared decision-making (between providers and patients) regarding treatment goals and NPSU should be central to the delivery of depot buprenorphine treatment programmes.
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  • 文章类型: Journal Article
    由于工作家庭冲突,职业母亲在追求职业抱负时面临挑战。最近的COVID-19大流行给职业母亲带来了额外的挑战,增加了护理需求,同时也造成了许多健康问题,经济和社会混乱。在本文中,我们研究了COVID-19对韩国职业母亲职业抱负的影响。我们采用纵向定性设计,对韩国32名幼儿母亲进行了64次深入访谈。通过在COVID-19大流行之前(2019年)和期间(2020年)采访同样的女性,我们能够记录职业母亲的职业抱负是如何受到COVID-19的影响的。研究结果表明,由于COVID-19,样本中所有在职母亲的护理需求都有所增加。然而,COVID-19对职业母亲职业抱负的影响取决于与育儿责任相关的性别观念。当工作母亲相信或受到相信母亲应该是儿童的主要照顾者(性别照顾信念)时,他们的职业抱负被削弱或放弃。另一方面,那些认为母亲不应该全权负责育儿的人(性别平等护理信念)继续追求自己的职业抱负或在COVID-19期间经历了职业发展。研究结果表明,与照顾责任相关的信念在职业母亲追求职业抱负方面发挥着重要作用,以及他们未来的潜在职业。
    Working mothers face challenges in pursuing their career aspirations due to work-family conflict. The recent COVID-19 pandemic has posed added challenges for working mothers by increasing care demands while also causing numerous health, economic and social disruptions. In this paper, we examine the impact of COVID-19 on Korean working mothers\' career aspirations. We employ a longitudinal qualitative design by analysing 64 in-depth interviews with 32 mothers of young children in South Korea. By interviewing the same women before (2019) and during the COVID-19 pandemic (2020), we are able to document how working mothers\' career aspirations were impacted by COVID-19. Findings show that all working mothers in the sample experienced increased care demands due to COVID-19. However, the influence of COVID-19 on working mothers\' career aspirations hinged on gendered beliefs related to childcare responsibility. When working mothers believed or were subjected to beliefs that mothers should be the primary caregiver for children (gendered care belief), their career aspirations were tempered or relinquished. On the other hand, those who believed that mothers should not be held solely responsible for childcare (gender egalitarian care belief) continued to pursue their career aspirations or experienced career advancements during COVID-19. Findings suggest that beliefs related to care responsibilities play an important role in working mothers\' pursuit of their career aspirations, and potentially their future careers.
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  • 文章类型: Journal Article
    这项研究描述了女医学生的经历中的认识不公正现象,并提供了有关这些学生如何努力纠正这些不公正现象的说明。认识上的不公正既是基于个人的社会身份对个人知识的直接抹黑,也是持续忽略其他知识方式的可能性的行为。在八个月的时间里,使用批判性叙事采访和个人反思,22名医学院一年级的女学生描述了她们的知识和经验被抹黑和忽视的情况,然后是他们制定机构纠正这些不公正的方法。参与者描述了他们纠正不公正的三种不同方式:收回他们为什么属于医学,大声说出课程,互相鼓舞。这项研究对于将医学生视为具有生活历史和经验的整体个体具有启示意义,并倡导将医学生的观点视为有价值的知识来源。
    This study presents descriptions of epistemic injustice in the experiences of women medical students and provides accounts about how these students worked to redress these injustices. Epistemic injustice is both the immediate discrediting of an individual\'s knowledge based on their social identity and the act of persistently ignoring possibilities for other ways of knowing. Using critical narrative interviews and personal reflections over an eight-month period, 22 women students during their first year of medical school described instances when their knowledge and experience was discredited and ignored, then the ways they enacted agency to redress these injustices. Participants described three distinct ways they worked to redress injustices: reclaiming why they belong in medicine, speaking up and calling out the curriculum, and uplifting one another. This study has implications for recognizing medical students as whole individuals with lived histories and experiences and advocates for recognizing medical students\' perspectives as valuable sources of knowledge.
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  • 文章类型: Journal Article
    患者和公众参与(PPI)在研究中变得越来越普遍,但由于缺乏多样性而受到质疑。虽然PPI文献越来越关注对PPI的评估研究,关注贡献者并不常见。这项研究追踪了四名难民父母作为公共贡献者参与儿童心理健康试验的经历,超过三年。
    该研究采用了纵向定性设计,并进行了焦点小组讨论。使用主题分析结合纵向分析方法对数据进行分析。
    难民父母参与的动机从关注个人利益转变为社会变革。他们最初将自己视为客人,转变为利用该群体获得社会支持。时间对建立信任产生了积极影响,继续合作,加强信任。实践方面在开始时占主导地位,随着时间的推移,这使得更多的注意力集中在研究上。他们确定了从参与中获得的一些教训。确定了父母和研究人员如何看待参与的差异,父母将研究人员视为研究的所有者。
    为了随着时间的推移维持成功的PPI合作,研究人员需要优先考虑时间和资源的投资,在沟通中,包括与口译员合作,并继续调整。
    UNASSIGNED: Patient and public involvement (PPI) is becoming more common in research, but has been problematized for lack of diversity. While PPI literature increasingly focuses on assessment of PPI on research, a focus on the contributors is less common. This study tracked the experiences of involvement among four refugee parents involved as public contributors in a child mental health trial, over three years.
    UNASSIGNED: The study used a longitudinal qualitative design with focus group discussions. Data were analysed using thematic analysis combined with a longitudinal analysis approach.
    UNASSIGNED: The refugee parents\' motivations for being involved changed from focusing on individual benefits to societal change. They initially viewed themselves as guests, which transformed into utilizing the group for social support. Time impacted trust-building positively, with continued collaboration strengthening trust. Practical aspects were dominant in the beginning, which shifted over time to allow more focus on research. They identified several learnings they gained from involvement. A discrepancy in how parents and researchers viewed involvement was identified, where parents saw researchers as owners of the research.
    UNASSIGNED: To sustain successful PPI collaboration over time, researchers need to prioritize investment in time and resources, in communication, including working with interpreters, and in continued adjustments.
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  • 文章类型: Journal Article
    运动神经元疾病(MND)中越来越多的信息寻求和决策文献尚未探索健康素养的影响。健康素养与人们必须获得的技能有关,理解,并使用健康信息,并受到参与医疗保健的动机的影响。我们旨在通过使用健康素养的构建来检查纵向访谈数据,从而更好地了解受MND影响的人们如何参与医疗保健。使用最大变异抽样,对19名患有MND的人和从MND专科诊所招募的15名护理人员进行了半结构化访谈。使用健康素养行为框架对成绩单进行演绎编码。分析使用基于矩阵的方法对纵向数据进行主题分析。与MND生活在一起的人和照顾者根据他们的优先事项和态度寻求细微差别的信息。信息摄取受到感知相关性的影响,并随着时间的推移而变化。时间允许机会反思和理解所提供信息的重要性。调查结果表明,如果对信息和咨询进行调整以满足其交流需求,则MND患者和护理人员将从中受益。结果突出了早期了解和适应沟通需求的潜在好处,个人喜好,以及为MND患者及其看护人提供信息的情感准备。
    The growing body of information-seeking and decision-making literature in motor neurone disease (MND) has not yet explored the impact of health literacy. Health literacy relates to the skills people have to access, understand, and use health information and is influenced by motivation to engage with healthcare. We aimed to better understand how people affected by MND engage in healthcare by examining longitudinal interview data using the construct of health literacy. Semi-structured interviews were conducted with 19 persons living with MND and 15 carers recruited from a specialist MND clinic using maximum variation sampling. Transcripts were deductively coded using a framework of health literacy behaviours. The analysis used a matrix-based approach for thematic analysis of longitudinal data. People living with MND and carers sought nuanced information dependent on their priorities and attitudes. Information uptake was influenced by perceived relevancy and changed over time. Time allowed opportunity to reflect on and understand the significance of information provided. The findings indicate that persons living with MND and carers benefit when information and consultations are adapted to meet their communication needs. The results highlight the potential benefits of gaining an early understanding of and accommodating the communication needs, personal preferences, and emotional readiness for information for persons living with MND and their carers.
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