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‘Our Stories...’: Co-Constructing Digital Storytelling Methodologies for Supporting the Transitions of Autistic Children - Study Protocol “我们的故事…”:共同构建支持自闭症儿童过渡的数字故事讲述方法——研究方案
IF 5.4 2区 社会学 Q1 SOCIAL SCIENCES, INTERDISCIPLINARY Pub Date : 2023-01-28 DOI: 10.1177/16094069221145286
S. Parsons, H. Kovshoff, N. Yuill, Devyn Glass, S. Holt, Asha Ward, Cleo Barron, Rebecca J. Ward
The voices of autistic children and their families are routinely underestimated and overlooked in research and practice. Research is challenged methodologically in accessing the views of autistic people who, by definition, are characterised by social and communication difficulties. Consequently, many voices remain unheard and experiences undocumented. This has important implications for the validity of research that is interested in improving the life experiences of marginalised groups since the representation of those experiences is partial and dominated by research perspectives that prioritise particular kinds of evidence. This situation matters because there remains a substantial gap between research and practice such that the longer-term outcomes for autistic people across social, educational and economic indices remain poor. We argue that research can only make an impact on practice if there is a genuine commitment to gathering and understanding these different sources of evidence in ways that connect research and practice from the start. This protocol describes a methodological project funded by the Economic and Social Research Council in the UK. The ‘Our Stories’ project applies and extends a participatory Digital Stories methodology to explore the research challenge of gathering a range of views from autistic children, families, and practice in authentic ways and at points of transition. Digital Stories is an accessible and inclusive methodology that supports the sharing of views and experiences in visual, video form. We describe the rationale for, and design, of the project across four pilot studies in different contexts as well as our approach to analysis and ethics. While our project focuses on autism, the knowledge we gain is applicable to research and practice much more widely and to any voices or groups who are marginalised from the traditional ways of doing research and to any contexts of practice.
自闭症儿童及其家人的声音在研究和实践中经常被低估和忽视。研究在获取自闭症患者的观点方面面临方法上的挑战,根据定义,自闭症患者具有社交和沟通困难的特点。因此,许多声音仍然闻所未闻,经历也没有记录在案。这对有兴趣改善边缘化群体生活体验的研究的有效性具有重要意义,因为这些体验的表现是部分的,并且由优先考虑特定类型证据的研究视角主导。这种情况很重要,因为研究和实践之间仍然存在巨大差距,自闭症患者在社会、教育和经济指标方面的长期结果仍然很差。我们认为,只有真正致力于以从一开始就将研究与实践联系起来的方式收集和理解这些不同的证据来源,研究才能对实践产生影响。本协议描述了由英国经济和社会研究委员会资助的一个方法论项目。“我们的故事”项目应用并扩展了参与式数字故事方法,以探索以真实的方式和过渡点收集自闭症儿童、家庭和实践的一系列观点的研究挑战。数字故事是一种可访问和包容的方法,支持以视觉和视频形式分享观点和经验。我们在不同背景下的四项试点研究中描述了该项目的基本原理和设计,以及我们的分析和伦理方法。虽然我们的项目专注于自闭症,但我们获得的知识适用于更广泛的研究和实践,适用于任何被传统研究方式和任何实践环境边缘化的声音或群体。
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引用次数: 1
Methodological Insights, Advantages and Innovations Manuscript Title: Lessons Learned in Conducting Qualitative Healthcare Research Interviews in Malawi: A Qualitative Evaluation 方法学的见解,优势和创新手稿标题:在马拉维进行定性医疗保健研究访谈的经验教训:定性评估
IF 5.4 2区 社会学 Q1 SOCIAL SCIENCES, INTERDISCIPLINARY Pub Date : 2023-01-22 DOI: 10.1177/16094069231153610
L. Suwedi-Kapesa, M. Kinshella, Hana Mitchell, M. Vidler, Q. Dube, D. Goldfarb, K. Kawaza, A. L. Nyondo-Mipando
With the growth of qualitative health research in low- and middle-income countries, local health professionals are increasingly involved in facilitating interviews with their fellow health workers. Understanding the methodological implications of such situations is required to ensure high-quality study findings and to build capacity and skills for interviewers with clinical backgrounds working with limited resources. This article reports a qualitative process evaluation of a study that assessed barriers and enablers of implementing bubble continuous positive airway pressure in Malawi. Findings were summarized through an iterative process of reflection on what worked, what did not work, areas for improvement, structural challenges, negotiating dual roles as nurses and researchers and the professional hierarchy within the health care system. Comprehensive practical training was critical to conducting qualitative research in a health setting. Interviewers were health workers themselves and required skills in reflexivity to effectively probe and navigate interviewing other health professionals, including senior staff. The main challenge in conducting interviews in a resource-limited healthcare setting was time constraints, which were compounded by staffing shortages. Lessons from this qualitative evaluation highlight the importance of training in reflexivity, engaging interviewers as collaborators and reserving adequate time to accommodate healthcare workers’ multiple roles and responsibilities.
随着低收入和中等收入国家质量健康研究的增长,当地卫生专业人员越来越多地参与促进与卫生工作者同行的访谈。需要了解这种情况的方法学影响,以确保高质量的研究结果,并为具有临床背景的访谈者在有限的资源下工作建立能力和技能。本文报告了对一项研究的定性过程评估,该研究评估了马拉维实施气泡持续气道正压通气的障碍和促成因素。通过反复思考哪些有效,哪些无效,需要改进的领域,结构性挑战,护士和研究人员的双重角色谈判,以及医疗保健系统内的专业等级制度,总结了研究结果。全面的实践培训对于在卫生环境中进行定性研究至关重要。采访者本身就是卫生工作者,需要具备自省性技能,才能有效地调查和引导采访其他卫生专业人员,包括高级工作人员。在资源有限的医疗环境中进行面试的主要挑战是时间限制,而人员短缺又加剧了时间限制。这一定性评估的经验教训强调了反思性培训的重要性,让面试官成为合作者,并预留足够的时间来适应医护人员的多重角色和责任。
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引用次数: 0
Developing a Systematic-Dynamic Approach to Critical Discourse Analysis: A Study Protocol in the Context of the Doctor–Patient Relationship in Western China 发展批判性话语分析的系统动态方法:中国西部医患关系背景下的研究方案
IF 5.4 2区 社会学 Q1 SOCIAL SCIENCES, INTERDISCIPLINARY Pub Date : 2023-01-21 DOI: 10.1177/16094069221149510
Longtao He, Yanqun Qin
Chinese scholarship conducting/attempting critical discourse analysis (CDA) on the doctor–patient relationship in China has, to date, predominantly relied on the use of analytical tools from systemic functional linguistics and pragmatics. This methodological orientation, by prioritizing the linguistic structure and functions of the textual data, does not tend to take into consideration the sociocultural contexts, complex power relations, genealogy of discourse, and practice-orientedness of discourse that CDA approaches usually touch on. This protocol article proposes a research design that constructs a systematic-dynamic CDA approach in the context of the doctor–patient relationship in western China in order to incorporate the aforementioned factors that previous Chinese scholarship has ignored. Physicians, cancer patients and their family members, and CDA methodologists are to be recruited to participate in focus groups and interviews to discuss the doctor–patient relationship from their own experience and to inform the construction of an integrated CDA approach. Qualitative context analysis will be adopted to analyze texts transcribed from interviews and focus groups, in order to generate themes and new concepts for the design of a novel systematic-dynamic CDA framework. By establishing an integrated CDA approach tailored to the doctor–patient relationship in western China, we will be able to provide empirical evidence and valuable insights to practitioners and policymakers to ease doctor–patient conflicts, which have intensified in recent years, and facilitate more harmonious relationships.
迄今为止,中国学术界对医患关系进行/尝试批判性话语分析主要依赖于系统功能语言学和语用学的分析工具。这种方法论取向,通过优先考虑文本数据的语言结构和功能,并不倾向于考虑CDA方法通常涉及的社会文化背景、复杂的权力关系、话语谱系和话语的实践导向性。本方案文章提出了一种研究设计,在中国西部医患关系的背景下构建了一种系统的动态CDA方法,以纳入先前中国学术界忽视的上述因素。将招募医生、癌症患者及其家属和CDA方法学家参加焦点小组和访谈,从他们自己的经验讨论医生与患者的关系,并为综合CDA方法的构建提供信息。定性语境分析将用于分析从访谈和焦点小组转录的文本,以产生主题和新概念,用于设计新的系统动态CDA框架。通过建立一种适合中国西部医患关系的综合CDA方法,我们将能够为从业者和政策制定者提供经验证据和有价值的见解,以缓解近年来加剧的医患冲突,促进更和谐的关系。
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引用次数: 1
Protocol of Application and Phenomenological Exploration of Body Mapping in Transgender Population: An Art-Based Research Method 跨性别人群身体测绘的应用方案与现象学探索:一种基于艺术的研究方法
IF 5.4 2区 社会学 Q1 SOCIAL SCIENCES, INTERDISCIPLINARY Pub Date : 2023-01-17 DOI: 10.1177/16094069221150108
María Isabel Gaete, Mariana Castillo-Hermosilla, Claudio Martínez, Felipe Concha, Isidora Paiva-Mack, Alemka Tomicic
This article is a methodological proposal for Body Mapping application in transgender population framed by a phenomenological approach and aimed at exploring the implicit and pre-reflective embodied cues of the experience of discordance between the felt body (the body I am) and the objective body (‘the body I have’) that opens a space in which words do not have easy access to. In order to describe our protocol of phenomenological exploration and application of Body Mapping, we detail the complete process in a single case. It corresponds to a female-to-male participant of 18 years old undergoing hormonal treatment with testosterone for 12 months before engaging in our study. Reflections about the potential of using art-based research methods for accounting of pre-reflective bodily experience of discordance in transgender population are detailed. The combination of the Body Mapping art-based research tool with a phenomenological approach for the study of experience seems promising for studies aimed at exploring experience from an embodied approach. It represents a radical first-person research method in which the images talk by themselves. Furthermore, including the researchers as beholders of the resulting artwork, assuming the role of inter-corporality of the aesthetic bodily resonance as part of the data collection procedure seems innovative but loyal and honest with what an Art-based research paradigm is.
这篇文章是一篇关于身体映射在跨性别人群中应用的方法论建议,以现象学方法为框架,旨在探索感觉的身体(我是的身体)和客观的身体(“我拥有的身体”)之间不和谐体验的隐含和预反射的具体线索,这为语言打开了一个不容易进入的空间。为了描述我们对身体映射现象学探索和应用的协议,我们在一个案例中详细描述了整个过程。它对应于一名18岁的女性对男性参与者,在参与我们的研究之前,接受了12个月的睾酮激素治疗。对使用基于艺术的研究方法来解释跨性别人群中不和谐的预反射身体体验的潜力进行了详细的思考。将基于身体映射艺术的研究工具与现象学方法相结合来研究经验,对于旨在从具体方法探索经验的研究来说似乎很有希望。它代表了一种激进的第一人称研究方法,在这种方法中,图像自己说话。此外,包括研究人员作为由此产生的艺术品的旁观者,作为数据收集程序的一部分,承担审美身体共鸣的主体间作用似乎是创新的,但对基于艺术的研究范式是忠诚和诚实的。
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引用次数: 0
Listening to the Margins: Reflecting on Lessons Learned From a National Conference Focused on Establishing a Qualitative Research Platform for Childhood Disability and Race 聆听边缘:反思建立儿童残疾和种族定性研究平台全国会议的经验教训
IF 5.4 2区 社会学 Q1 SOCIAL SCIENCES, INTERDISCIPLINARY Pub Date : 2023-01-17 DOI: 10.1177/16094069231151306
F. Moola, Tim Ross, Aliya Amarshi, A. Sium, Alyssa R. Neville, Nivatha Moothathamby, B. Dangerfield, Tamara Tynes-Powell, Tharanni Pathmalingam
The late Black feminist scholar, bell hooks, suggested that the margin can be a place of radical possibility, where marginalized people nourish their capacity for collective resistance. On the margin, it is possible to generate a counter-language. In this paper, we chronicle, describe and reflect upon how bell hooks' ideas inspired the creation of a national 2-day conference titled, ‘Listening to the Margins’. This conference was focused on understanding the intersectional experiences of childhood disability and race with a view to better supporting racialized disabled children, youth, and their families. This conference was needed because intersectional experiences of childhood disability and race have been silenced in childhood disability studies, critical race studies, and various other resistance-oriented systems of thought. Racialized children with disabilities and their families are often unsupported as they navigate Euro-centric healthcare systems. Reflecting on lessons learned from our conference, we suggest several strategies for advancing meaningful research programs with racialized disabled children. Strategies include centering the art of listening, amplifying the margin, engaging the arts to promote empathy, embracing psychosocial support in work on ableism and racism, developing clinical tools and practices that are grounded in lived patient experiences, and advancing decolonizing research that recognizes the role research has historically played in perpetuating colonial violence. In totality, this article unpacks how sitting on the margins, as bell hooks suggested, has allowed us to occupy a place of discomfort and creativity necessary to disrupt dominant discourses. In so doing, we have made space for the hidden narratives of racialized disabled children and their families.
已故黑人女权主义学者贝尔·胡克斯(bell hooks)认为,边缘可能是激进可能性的地方,被边缘化的人在那里培养集体抵抗的能力。在边际上,也有可能产生一种相反的语言。在本文中,我们编年史,描述和反思bell hooks的想法如何激发了为期两天的全国会议的创建,名为“倾听边缘”。这次会议的重点是了解儿童残疾和种族的交叉经验,以便更好地支持种族化的残疾儿童、青年及其家庭。这次会议是必要的,因为在儿童残疾研究、批判性种族研究和各种其他以抵抗为导向的思想体系中,儿童残疾和种族的交叉经验已经被沉默了。种族化的残疾儿童及其家庭在以欧洲为中心的医疗保健系统中往往得不到支持。根据会议的经验教训,我们提出了一些策略,以推进有意义的种族化残疾儿童研究项目。策略包括以倾听的艺术为中心,扩大边缘,利用艺术来促进同理心,在残疾主义和种族主义的工作中接受心理社会支持,开发基于患者生活经验的临床工具和实践,以及推进非殖民化研究,认识到研究在延续殖民暴力方面所起的历史作用。总的来说,这篇文章揭示了如何坐在边缘,正如贝尔·胡克斯所建议的那样,让我们占据了一个不舒服和创造性的地方,这是打破主导话语所必需的。在这样做的过程中,我们为种族化的残疾儿童及其家庭的隐藏叙述腾出了空间。
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引用次数: 1
“Will You be Our Qualitative Methodologist?” Reflections on Grant Work Responsibilities “你会成为我们的定性方法论者吗?”关于助学金工作职责的思考
IF 5.4 2区 社会学 Q1 SOCIAL SCIENCES, INTERDISCIPLINARY Pub Date : 2023-01-16 DOI: 10.1177/16094069231152452
Jennifer R. Wolgemuth, Lorien S. Jordan
Government funders increasingly encourage interdisciplinary mixed methods research projects that include qualitative methods. For qualitative methodologists, the opportunity to collaborate on interdisciplinary research teams may come at a cost when their expertise is marginalized relative to quantitative designs. Drawing on concepts from critical pragmatism and an ethics of care, we reflect on ethical tensions in our experiences as qualitative methodologists on government funded interdisciplinary research teams. Driven by an intersubjective and justice-oriented view of knowledge development and care as interdependence, we offer our thoughts, experiences, and guidance under four orienting concepts: collaboration, education, critique, and critical reflexivity. We culminate our reflection by offering a practical and responsible way forward for qualitative methodologists who accept grant work invitations, a way that holds promise for advancing interdisciplinary, critical, and care-based action in funded research.
政府资助机构越来越多地鼓励包括定性方法在内的跨学科混合方法研究项目。对于定性方法学家来说,当他们的专业知识相对于定量设计被边缘化时,与跨学科研究团队合作的机会可能会付出代价。利用批判实用主义和关怀伦理的概念,我们反思了作为政府资助的跨学科研究团队的定性方法学家的经验中的伦理紧张关系。在主体间性和以正义为导向的知识发展和护理相互依赖的观点的推动下,我们在四个导向的概念下提供我们的想法、经验和指导:合作、教育、批判和批判性反思。我们通过为接受资助工作邀请的定性方法学家提供一种实用和负责任的方式来完成我们的反思,这种方式有望在资助的研究中推进跨学科、批判性和基于护理的行动。
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引用次数: 1
Governance Diaries: An Approach to Researching Marginalized People’s Lived Experiences in Difficult Settings 治理日记:一种研究困难环境下边缘人生活经历的方法
IF 5.4 2区 社会学 Q1 SOCIAL SCIENCES, INTERDISCIPLINARY Pub Date : 2023-01-12 DOI: 10.1177/16094069221150106
Miguel Loureiro, A. Joshi, K. Barnes, Egídio Chaimite
How do chronically poor and marginalized citizens interact with and make claims to the different public authorities that exist in fragile, conflict and violence-affected contexts? In other words, how does governance from below look like in difficult settings? Given the centrality of the ‘leave no one behind’ agenda, an understanding of how such populations meet their governance needs can help identify the constraints to achieving development for all in these challenging settings. We wanted to research these questions comparatively, to see if there were common features of response in different contexts, with the presence of various kinds of non-state actors, diverse histories of colonialism and authoritarianism, and widely different social norms. In this article we describe the governance diaries approach, an iterative alternative to large-n surveys and multi-sited ethnographies we developed in the process of answering these questions. Governance diaries, working as a qualitative panel data, are a suitable approach for researching complex behavior that changes over time as large-n surveys are insufficiently dynamic to trace the processes behind change (lacking sensitivity) and ethnographic studies often have limited generalizability (lacking comparability). We describe here how this approach works and the challenges and opportunities it offers for research.
长期贫困和边缘化的公民如何与脆弱、受冲突和暴力影响的不同公共当局互动并向其提出要求?换言之,在困难的环境中,底层治理是什么样子的?鉴于“不让任何人掉队”议程的中心地位,了解这些人口如何满足其治理需求,有助于确定在这些具有挑战性的环境中实现全民发展的制约因素。我们想对这些问题进行比较研究,看看在不同的背景下,在各种非国家行为者的存在、殖民主义和威权主义的不同历史以及广泛不同的社会规范下,是否有共同的反应特征。在这篇文章中,我们描述了治理日记方法,这是我们在回答这些问题的过程中开发的大范围调查和多地点民族志的迭代替代方案。治理日记作为一种定性的小组数据,是研究复杂行为的合适方法,这些行为随着时间的推移而变化,因为大规模调查不够动态,无法追踪变化背后的过程(缺乏敏感性),人种学研究的可推广性往往有限(缺乏可比性)。我们在这里描述了这种方法是如何运作的,以及它为研究提供的挑战和机遇。
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引用次数: 0
Disaster Diaries: Qualitative Research at a Distance 灾难日记:远距离定性研究
IF 5.4 2区 社会学 Q1 SOCIAL SCIENCES, INTERDISCIPLINARY Pub Date : 2023-01-11 DOI: 10.1177/16094069221147163
Gracen Mueller, A. Barford, Helen Osborne, Kaajal Pradhan, Rachel Proefke, Soniya Shrestha, A. Pratiwi
The common-place quantification of humanitarian disasters enables rapid and informed crisis responses. In disaster settings, understanding feelings and perceptions regarding individuals’ experiences, livelihood disruptions and coping mechanisms can also be valuable for extending and deepening quantitative insight. This paper explores the potential for diary methods to capture extensive, nuanced data from marginalised groups during a disaster, by drawing upon a study with 100 young diarists (aged 15–29) who produced 1418 diary entries over 4 months. In particular, we share how diary-methods can be designed inclusively, through addressing themes of equitable research partnerships, supporting more vulnerable participants, ensuring data quality, data management, participatory analysis, and budgeting for collaborative research.
对人道主义灾害进行普遍量化,可使危机反应迅速而明智。在灾害环境中,了解对个人经历、生计中断和应对机制的感受和看法,对于扩展和深化定量洞察也很有价值。本文通过对100名年轻日记作者(15-29岁)在4个月内写了1418篇日记的研究,探讨了日记方法在灾难期间从边缘化群体中获取广泛、细致数据的潜力。我们特别分享了如何通过解决公平的研究伙伴关系、支持更弱势的参与者、确保数据质量、数据管理、参与性分析和合作研究预算等主题,包容性地设计日记方法。
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引用次数: 3
A Mixed-Methods Approach to Climate Action Planning 气候行动规划的混合方法
IF 5.4 2区 社会学 Q1 SOCIAL SCIENCES, INTERDISCIPLINARY Pub Date : 2023-01-11 DOI: 10.1177/16094069221150107
Lauren Quinlivan, N. Dunphy
With global greenhouse gas emissions on the rise, the higher education sector has recognised the part it must play in reducing its carbon footprint, setting an example for others to follow in the global fight against climate change. In 2019 University College Cork undertook the complex task of designing and developing a Climate Action Plan, beginning with the compilation of a detailed inventory of the university’s greenhouse gas emissions and followed by a period of engaged research during which potential climate action measures were identified by key stakeholders. In response to the start of the Covid-19 pandemic and introduction of public health restrictions, a structured dialogue – modified Delphi – approach was employed as part of the engaged research. This mixed-methods approach proved successful at identifying a number of potential opportunities for reducing the university’s carbon footprint, with the structured dialogue method in particular offering the researchers numerous advantages for conducting engaged research during the unique circumstances arising as a result of the Covid-19 pandemic.
随着全球温室气体排放量的上升,高等教育部门已经认识到它在减少碳足迹方面必须发挥的作用,为其他国家在全球应对气候变化的斗争中树立榜样。2019年,科克大学学院承担了设计和制定气候行动计划的复杂任务,首先是编制大学温室气体排放的详细清单,然后是一段时间的参与研究,在此期间,主要利益相关者确定了潜在的气候行动措施。为了应对Covid-19大流行的开始和公共卫生限制的引入,采用了结构化对话-改进的德尔菲方法作为参与研究的一部分。事实证明,这种混合方法在确定减少大学碳足迹的许多潜在机会方面取得了成功,特别是结构化对话方法为研究人员在Covid-19大流行造成的独特情况下进行参与性研究提供了许多优势。
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引用次数: 1
Reading Focus Group Data Against the Grain 阅读焦点小组数据
IF 5.4 2区 社会学 Q1 SOCIAL SCIENCES, INTERDISCIPLINARY Pub Date : 2023-01-09 DOI: 10.1177/16094069221146991
Rosie Walters
This article explores how reading focus group data ‘against the grain’ offers new insights into publics’, and especially marginalised groups’, negotiation of dominant discourses. Using data from a study with members of the UN Foundation’s Girl Up campaign in the UK, US and Malawi, I demonstrate that reading against the grain both across and within groups enabled me to explore the girls’ complex negotiations of girl power discourses in international development. I argue that reading focus group data against the grain involves paying attention both to wider social power relations, as is crucial to a poststructuralist discourse analysis, and to interactions between group members, a form of analysis more commonly associated with Conversation Analysis. This methodological strategy enabled me to explore the topic of girl power discourses in international development from a new perspective, moving beyond the abundance of critiques in the literature of dominant discourses emerging from powerful institutions. By focusing on the girls’ instances of resistance to, and critical engagement with, dominant discourses, I suggest that reading focus group data against the grain opens up the possibility of a rich new area of research for scholars and practitioners alike: one which goes beyond simplistic victim/agency binaries and explores the complexities of audiences’ readings of texts.
本文探讨了如何“逆行”阅读焦点小组数据,为公众,特别是边缘化群体,主导话语的谈判提供了新的见解。我利用与联合国基金会Girl Up运动成员在英国、美国和马拉维进行的一项研究的数据,证明了在群体之间和群体内部进行逆反阅读,使我能够探索国际发展中女孩权力话语的复杂谈判。我认为,阅读焦点小组的数据需要关注更广泛的社会权力关系,这对后结构主义话语分析至关重要,也需要关注小组成员之间的互动,这是一种更常与对话分析联系在一起的分析形式。这种方法论策略使我能够从一个新的角度探索国际发展中的女孩权力话语这一主题,超越了文献中对来自强大机构的主导话语的大量批评。通过关注女孩们对主流话语的抵制和批判性参与,我认为,阅读焦点小组数据为学者和从业者开辟了一个丰富的新研究领域的可能性:这个领域超越了简单的受害者/代理二元对立,探索了受众对文本阅读的复杂性。
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引用次数: 2
期刊
International Journal of Qualitative Methods
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