Personal Narratives Research Articles

Introducing patient stories in health sciences education: the learning experiences of students

BackgroundIt has been advocated that the development of medical school curricula must be informed by students, doctors in training, educators, employers, other health and social care professionals and patients, families and carers. Patients are widely employed to teach clinical and interpersonal skills, and while recognised as crucial in health education, they have mostly been offered a passive role. We assessed the impact of patients contributing personal illness narratives in the master curriculum of allied health care professionals on students’ learning experiences.MethodsWe designed a module (Patient and Society) for a master’s degree programme in Health Sciences at the University of Southern Denmark in collaboration with six patients. The patients contributed to the teaching by sharing and discussing their personal illness narrative. At the end of the module, as part of the exam, we asked the students to reflect on the patients’ contribution to the module and how this affected their learning experiences. The 500-word exam responses of 29 students were analysed, in collaboration with six patients, using thematic analysis.ResultsIncluding patients’ illness narratives lifted students’ academic learning, and their personal and professional development. The stories brought theoretical concepts to life; it helped the students to obtain, retain, and apply academic knowledge. Actively and uninterrupted listening to patients’ illness experiences promoted empathy and critical reflection on clinical practice. Faced with the impact of a disease on a person’s life, seeing the healthcare system through a patient’s lens made students reflect critically on the medical positivist model ruling the health care system focused on just fixing the medical problem with very little room for the illness experience.ConclusionOur analyses support previous findings indicating that patient narratives are a powerful tool to achieve academic and professional development. Working with patients in health education has the potential to work towards a more inclusive epistemological stance in the health care system and health research.

The ‘performative’ university: theoretical and personal reflections

ABSTRACT For centuries, universities have proliferated and flourished around the world, playing an important role in societal knowledge production and diffusion. However, in the past four decades, this old organizational form has been subjected to neoliberal, managerialist policy doctrines such as New Public Management. Following this, universities have tended to become more ‘business-like’ in their internal management and governance, with generally perceived adverse effects on the quality of academic education, research, and working conditions. These developments pose fundamental threats to academic freedom and free knowledge production and diffusion. Acknowledging various forms of academic resistance to, and coping with, these threats, the purpose of our paper is twofold. First, we adopt the concept of ‘performativity’ – hitherto researched mainly in primary and secondary schools in Anglo-Saxon contexts – to account for, and critique, neoliberal university policies, and practices in a variety of Global North settings. Second, through collaborative autoethnography, we add our own personal narratives to ‘talk back’ to managerialism.

Contextualizing Kamla Patel's Torn from the Roots: A Historical Examination of Personal Narrative

Contextualizing Kamla Patel's Torn from the Roots: A Historical Examination of Personal Narrative

Integrating Research, Theory and Knowledge for Professional Development: A Narrative Inquiry

This personal narrative in qualitative research investigation delves into the impact of reflection on the personal and professional growth of educators. Critical reflection emerges as a pivotal concept that educators assimilate into their daily practices. Despite ongoing discussions about its essential nature, the role of critically reading and reflecting on theories and research in preparing teachers within South Asian pedagogy remains uncertain. This article adopts a cross-case study approach, incorporating a personal narrative from an educator to explore critical reflection in community development. The researcher critically analyzes two scholarly articles from distinct journals, grounded in the belief that theory and knowledge evolve through simultaneous research and reflection. The study’s findings underscore the importance of reflection in enhancing teachers’ awareness of personal and professional growth, contributing to advanced community knowledge. Improving professional knowledge through research is a key outcome, enabling educators to optimize theory and knowledge for locally relevant, high-quality scholarship.

Exhibiting slavery in Australia: Personal narratives and legacies

AbstractThe history of slavery has often been located on the same continuum as that of incarceration. This article explores the development of an exhibition representing the legacies of slavery in Australia, analysing Australian and international exhibitions alongside theories of museology, historiography and memory. It begins by considering the growth of slavery memory since the latter twentieth century, and Australia's own slavery heritage. The second half of the article focuses on curatorial directions and decisions taken in the exhibition, which our research team is currently developing in partnership with the Australian National Maritime Museum as part of an Australian Research Council project. Much of the project's research to date has been biographical, investigating the lives of individual slavers and colonists to explore colonial and racial frameworks still underpinning contemporary Australia. For the exhibition, we are investigating ways of expanding the scope to represent the lives and experiences of enslaved individuals. We are also exploring the challenges of retracing past lives, the potential limits of empathy, and the politics of ownership when telling stories about the past. This includes considering community participation, the biases and silences of the archives, and the use of art in representing the past.

Beauty from brokenness: Witness and wonder as God works through all bodies

This article draws on personal narrative and art along with disability and the Bible to challenge who is able to witness. Disability creates barriers in how people imagine witness to God taking place. Personal narrative paints a picture of this reality. Yet the gospel flips expectations with ultimate beauty as Jesus on the cross. Accordingly, a damaged body points to God working through brokenness to bring blessing. In light of frailty, brokenness, and troubles in this world, this article intersects art, disability and Christian mission to demonstrate how art subverts norms of human strength, and highlights how beauty flows through brokenness. With Paul’s weakness language in 2 Corinthians, disability becomes the showplace for God’s glory.

Cognitive Representations and Personal Experiences of COVID-19 Using Social Virtual Reality

Abstract In the wake of the global COVID-19 pandemic, understanding its psychological and social impacts has become a critical area of scientific inquiry. The pandemic's far-reaching consequences have been felt across diverse populations, prompting a need for innovative research methodologies to capture the breadth of individual experiences. This study addresses the challenge of articulating personal narratives during the pandemic by leveraging the capabilities of social virtual reality (VR) and digital storytelling, a method yet to be fully explored in pandemic-related research. Here, we show that by integrating photogrammetric 3D media with social VR technology, we can obtain a nuanced understanding of individuals' experiences during the COVID-19 lockdowns. Our analysis reveals distinct themes related to health, life events, environment, technology, and employment, illustrating a complex interplay of factors influencing personal experiences during the pandemic. These findings contrast with and expand upon previous research by providing a more immersive and participant-centric perspective on the pandemic's impact. They highlight the value of using VR to capture and analyze personal experiences in unprecedented global situations. By situating these results within the broader context of pandemic research, this study underscores the potential of VR as a transformative tool for social science research. It opens new avenues for understanding complex human experiences, offering valuable insights across scientific disciplines, thereby enhancing our collective knowledge of the pandemic's multifaceted effects on society.

Remembering Lost Lives and Collective Healing from Trauma: Homicides, Incarceration, and Pain-Driven Advocacy in the Jane and Finch Community

This article serves as a vessel for knowledge mobilization and activism as research, intertwining remembrance of lost lives and communal healing by sharing collective pain amongst the authors and bolstering mutual support. Guided by personal encounters with violence including death, homicides, and incarceration, four authors comprising a teacher, social worker, and two community activists, unveil their 20-year+ advocacy journey in the Jane and Finch community in Toronto, Canada including their involvement with programs and services through the non-profit organization Youth Association for Academics, Athletics, and Character Education (YAAACE). The pain and suffering are shared as symptoms of systemic trauma inflicted on the community and how the trauma is perpetuated through institutional neglect for racialized under-resourced communities. The conversations are examined through an intersectional and Critical Race Theory lens, centering life experiences associated with trauma and systemic violence. Lived experiences and emotions are shared as valuable data through duoethnography as a methodology, emphasizing how inspiration is harnessed from the pain and trauma to guide community advocacy. Effective coping and healing strategies are outlined from various vantage points. Overall, the article contributes to filling in the research gap by centering racialized personal narratives in the Canadian context, offering nuanced lessons for integrating research and activism, and showcasing tangible ways to support the needs of youth and families through community-oriented, trauma-informed approaches.

Personalized Neuroimaging Reveals the Impact of Children's Interests on Language Processing in the Brain.

Cognition is shaped by individual experiences and interests. However, to study cognition in the brain, researchers typically use generic stimuli that are the same across all individuals. Language, in particular, is animated and motivated by several highly personal factors that are typically not accounted for in neuroimaging study designs, such as "interest" in a topic. Due to its inherently personal and idiosyncratic nature, it is unknown how interest in a topic modulates language processing in the brain. We conducted functional magnetic resonance imaging (fMRI) in 20 children (ages 6.98-12.01 years, mean(SD)=9.35(1.52), 5 female/15 male) as they listened to personalized narratives about a topic of specific interest, as well as to non-personalized generic narratives. We found that personalized narratives about a topic of interest increased activation in canonical language areas, as well as in reward and self-reference regions. Strikingly, we found that activation patterns elicited by topics of personal interest were more consistent across children, despite their idiosyncratic nature, than activation patterns elicited by narratives about an identical generic topic. These results reinforce the critical role that personal interests play in language processing in the human brain, and demonstrate the feasibility of using a personalized neuroimaging approach to study the effects of individually-varying factors such as interest in the brain.

Prioritizing Crip Futures: Applying Crip Theory to Create Accessible Academic Experiences in Higher Education

The purpose of this paper is to explore how crip theory can be applied in higher education to resist ableism and create accessible academic experiences for disabled college students. Using personal narratives about psychological and learning disabilities as our anchors, we describe how ableism shapes college students' academic experiences, such as the fast pace of academic rigor and faculty perceptions of accommodations providing an unfair advantage for disabled students. We then review crip theory tenets, including fluidity, interdependence, and crip time, and offer possibilities for applying those tenets in practice. Some of these possibilities include collaborative conversations between students and disability services providers, embracing imperfection, co-constructing course access options, and de-stigmatizing non-normative academic timelines. We frame our thoughts about practice through the notion of crip manifestos (Kafer, 2017), which suggest both practical considerations grounded in current ableist realities and radical practices that envision crip futures.

The Role of Patient Organizations in Shaping Research, Health Policies, and Health Services for Rare Genetic Diseases: The Dutch Experience.

In 2023, the genetics scientific community celebrated two special anniversaries: the discovery of the double helix structure of DNA was published in 1953 and in 2003 the Human Genome Project was declared completed and made publicly available. To this day, genetics and genomics research is continuing to evolve at high pace and is identifying a steadily increasing number of genes as causal for distinct genetic diseases. The success story of genetics and genomics would not be complete without taking due account of the role of patient advocacy organizations in this process. This paper is based on the personal narrative (oral history) of a father whose daughter was born with a rare genetic disease (RGD) in the 1960s. The first-hand experience of living as a family with an RGD in those days made him a leading pioneer not only in the foundation of patient organizations at national, pan-European, and international levels but also in the development of multi-stakeholder co-operation and networking. Today, patient advocacy organizations play an active role in shaping health and research policies at national, EU, and international levels to ensure that their needs in regard to advancing RGD diagnostics, care, and treatment are addressed.

From Me-Search to We-Search: (Re)Imagining Mentorship and Intergenerational Relationships for Black Women in Leadership

This article examines the process of forming an intergenerational mentoring relationship among three Black women scholars at different levels of academic leadership in higher education. Over the course of a summer, we came together to critically examine how our collective journey as leaders shifted from “me-search” to “we-search.” In the spirit of Ubuntu or “I am because we are,” our we-search centers Black indigenous knowledge that honors a communal destiny and legacy where leadership and mentorship must be done in a collective. Thus, we used Black Feminist Action Research as a critical methodology that disrupts hegemony in inquiry, mentoring, and leadership. In a four-phased approach, we analyzed personal artifacts and narratives, grounded in radical Black feminist honesty. By conducting such qualitative “we-search,” we co-construct sites of healing and sanctuary and provide valuable insights and strategies for Black scholars and leaders.

Analyzing leukemia content on social media: a comprehensive cross-sectional examination of Instagram and YouTube

Introduction: Leukemia is a hematologic malignancy characterized by the uncontrolled proliferation of abnormal white blood cells. Patients with childhood leukemia may turn to social media for emotional support and information. This study aimed to identify the quality, reliability, understandability, and actionability of posts related to leukemia on YouTube and Instagram. Methods: Apify, a web scraping tool was used to gather relevant posts. The top 100 posts in each hashtag “leukemia,” “childhoodcancer,” “childhoodcancerawareness,” “leukemiaawareness” on Instagram, and the top 60 videos on YouTube for the term “leukemia” were scraped on 24 September 2023, resulting in the collection of 361 Instagram and 58 YouTube videos. All posts and videos in English and related to leukemia were included in the analysis, and thus, a total of 231 Instagram posts and 56 YouTube videos were evaluated, guided by the strengthening the reporting of cohort studies in surgery guidelines and utilized standardized tools [Global Quality Scale (GQS), modified DISCERN, and Patient Education Materials Assessment Tool for Audiovisual Materials (PEMAT-A/V)]. Data analysis was done in R Studio (4.3.1.); Kruskal–Wallis test was used to determine statistical significance. Results: YouTube videos demonstrated commendable standards with moderate quality and reliability (GQS 3.1, modified DISCERN 2.9, PEMAT-A/V understandability averaged 89%, and actionability averaged 50%). The impact of the uploader type on content quality and reliability was insignificant on both platforms. However, a notable correlation between YouTube video duration and quality scores underscored the potential influence of content length on information presentation. Instagram posts exhibited comparatively lower scores (GQS 2, modified DISCERN 1.8, PEMAT-A/V understandability averaged 56%, and actionability averaged 15%), indicating a need for enhanced content quality. Personal narratives emphasized the significant role of lived experiences in shaping content. Conclusion: Despite high understandability, actionable content, particularly on Instagram, necessitated improvement, revealing a potential gap in disseminating practical information. While personal narratives contributed significantly, lower reliability scores highlighted inherent challenges, underscoring the pivotal role of healthcare provider engagement and content validation.

Effectiveness of mental health literacy intervention and contact-based education on knowledge, attitude, and stigma towards mental health among secondary school students in Chennai, South India: A cluster randomized controlled trial

BackgroundGlobal trends indicate a rise in mental health disorders among youth, prompting need for effective interventions. Mental health literacy interventions have demonstrated benefits such as improved knowledge, treatment understanding, help-seeking behaviors, and stigma reduction. This study aimed to assess the impact of a comprehensive mental health literacy program on knowledge, attitudes, and stigma related to mental health among secondary school students in Chennai. MethodsCluster-randomized controlled trial was conducted among students from four secondary schools. Randomization was at cluster level to minimize contamination. Participating schools provided consent, and all ninth-grade students were invited to participate. Written informed consent was obtained from parents/guardians, and assent was obtained from students. There were no specific exclusion criteria, except for students who declined to participate. Analyses were performed using intention-to-treat principles, with multiple imputation for missing outcome data. ResultsAfter adjusting for cluster effects, the intervention group showed a significant improvement in attitude scores compared to the control group (mean difference 0.85, 95 % CI: 0.32–1.39, p = 0.002). However, no significant differences were observed between the two groups in terms of knowledge and stigma. ConclusionThe findings suggest that delivering a mental health literacy curriculum alongside contact-based education involving individuals with lived experiences of mental disorders positively influences students' attitudes toward mental health. Although no significant changes were observed in knowledge and stigma levels, the integration of mental health literacy programs with personal narratives from those with lived experiences holds promise for addressing mental health stigma and promoting positive attitudes among school students.

First come, first observed: Utilizing observation as a pedagogical tool to transform leadership learning.

Leadership observation is a technique that relies on active and inactive recall to enhance learning through connecting theoretic concepts to real-world examples. This article makes the case that leadership observation should be thoughtfully used as a pedagogical tool to aid in students' leadership learning. Knowledge will be shared through personal narratives and practical strategies. Leadership educators should consider implementing moments of intentional observation into their curriculum to deepen student connections and prepare them for future endeavors.

Can the Alienated Helper Speak?

This autoethnographic study explores the often overlooked and undervalued roles of assistants in the contemporary art world, focusing on their experiences of alienation and burnout. Through a combination of personal narrative and theoretical analysis, it examines how support roles, despite being essential to artistic production, remain invisible within the dominant art discourse that idolizes creative authorship. I begin with a reflection on my experiences as both an assistant and a curator, highlighting instances of emotional labor and burnout among support staff. The narrative is contextualized within broader cultural and social frameworks, drawing on feminist theory and sociological studies that critique the hierarchical nature of artistic labor. Extending to autofictional literature, the analysis showcases how assistants articulate their alienation and critique the art world’s exploitative dynamics. By interweaving personal and literary accounts, the study underscores the paradox of interdependence in art, where the labor of assistants is both indispensable and disregarded. The conclusion advocates for a reexamination of artworld structures, urging greater recognition and support for those in support roles.

Finding Mother, Finding Ourselves: An Essay Inspired by Vissing’s “The Impact of Negation of the Maternal Body”

This paper places maternal subjectivity in an embodied, intersubjective context through the use of personal narrative. In response to the work of Helena Vissing (this issue), who lodges a critique of how psychoanalysis has negated aspects of maternal experience, it both extends and challenges her ideas, reacting to the disembodied nature of her critique and relocating it into the realm of an autobiographical story. It also problematizes cis-heteronormative biases in scholarship around maternal subjectivity through the inclusion of queer experience and queer family configurations in the narrative.

Physical Limitations of Scleroderma- A Personal Perspective

Scleroderma, like many misunderstood chronic diseases, put a tremendous burden on both the patient and their family. In this deeply personal narrative, the first author describes the impact of scleroderma on her family.

RAPE CULTURE AND RAPE MYTHS ON FACEBOOK FANPAGE OF BILLBOARD: THE CASE OF KESHA AND DR. LUKE

This study explores the dynamics of rape culture and myths surrounding sexual assault through discussions on Billboard's Facebook fanpage, focusing on the case involving Kesha and Dr. Luke. Analysis of 1000 comments across four posts revealed that over half of the comments expressed support and empathy towards Kesha, while approximately a third blamed her. Supportive comments debunked rape myths, shared personal narratives, highlighted the complexities of sexual assault, and criticized Dr. Luke. These comments advocate victims and challenge harmful attitudes, suggesting the need to broaden societal and legal definitions of rape, foster constructive dialogues, and identify and challenge systemic issues that prevent victims from speaking out. In contrast, victim-blaming comments perpetuate rape myths by accusing Kesha of false accusations and non-conformity to gender norms. This study indicates that Facebook can emerge as a platform where individuals actively combat victim blaming and slut shaming, denounce hegemonic masculinity, and advocate for victims, illustrating its potential to foster constructive dialogues and challenge entrenched beliefs about sexual assault.

Narrative value theory: an educational biography as an iterative theory-of-self

ABSTRACT Personal narratives can be seen as iterative theories-of-valued-selves: thick, deliberate outlines traced over and selectively enhancing and obscuring the finer details of life as lived. Through telling such stories we represent and orient ourselves towards certain potential actions while turning away from others. Biographical narration is in this way a mobilisation of our pasts to identify valued futures. This article draws together narrative theory, identity psychology and educational philosophy to submit a tentative theory of educational narratives as iterative theories of personal value. The author’s autoethnographic account of completing a postgraduate course online throughout the COVID pandemic is then used as the basis for an inductive analysis of narrative features and their felt and represented significance. This process highlights the ways in which the author’s personal narrative can be read as a theory-of-valued-self, identifying key moments of interaction which characterise the narrator’s valued identity and open causal pathways to future valued action. Such practices may have potential in application with so-called ‘lifelong learners’, adults who continually engage with education throughout life particularly in response to major professional and personal disruption which can otherwise result in a lack of continuity and identity coherence.