No full-text available
To read the full-text of this research,
you can request a copy directly from the authors.
Narrative As Construct and Construction
Abstract
This introductory chapter discusses narrative as a theoretical construct and within the context of anthropology and medicine. It then examines the succeeding chapters and situates them within broader trends. These trends are not limited to medical anthropology or to cultural anthropology, but extend into various disciplines. It examines the centrality of narrative to some forms of therapeutic practice and discusses the definition of the term “story” and the different uses of the narrative form. The chapter also studies some important terms related to the narrative construct and views the narrative as a form of communication, representation, and construction of self.
... I examine how constructing these narratives helps the patients to give meaning to their own illness experience and to cope with the dramatic changes that cancer has brought to their lives. The illness narrative is a powerful tool for ill people to reflect upon and reconstruct their identity and social position in order to re-establish a culture-specific sense of order and continuity after the disruption (Mattingly, 2000). I also investigate how the cancer patients combine public and private realms, common and intimate knowledge, and history and biography in their illness narratives in their struggle against marginalization, stigmatization and discrimination in their everyday life and during treatment. ...
... Through telling illness narratives, ill people influence how their illnesses and their selves are understood in the society, and they integrate their illness into the larger context of life. Therefore, the very ability to construct an illness narrative, which represents personal, bodily and social experiences brought about by the illness, and to convey it to a different "audience," is empowering for the patients and crucial for their healing process (Mattingly and Garro, 2000). This is also reflected in the illness narratives of several cancer patients who stressed that they do their best to be strong and keep their morale high as doctors told them to do. ...
... Social scientists who analyze illness narratives indicate that through narratives ill people build a bridge between individual and social or cultural realms, as well as between what is private and public, and they also create a sense of order and continuity out of rupture ( Garro and Mattingly, 2000). Linda Hunt (2000) explains that chronic illness "can produce major disruptions to the core components of a sense of self, such as social roles and relationships," and in these cases, illness narratives "hold the potential not only of articulating the disruptions experienced but also of reconfiguring one's very social identity." ...
... Thus, the curriculum development committee was biased towards patient and family issues rather than more systemic and population concerns. This social orientation also lent itself to phenomenological, ethnographic approaches that emphasized the everyday experiences and illness narratives of patients and their families (Kleinman 1988;Garro and Mattingly 2000;Garro 1995), and to the case-based approach of the PBL curriculum. ...
... We matched pairs of students with people who had genetic conditions or chronic illnesses (or their parents) for semi-structured interviews that students conducted in the families' homes. The goals were for students to elicit an illness narrative to understand how the condition affected the experiences of the individual and their family, their relationships with their community, and their interaction with medical, social, and educational services (Kleinman 1988;Garro and Mattingly 2000). ...
In Canada, where both health care and medical education are publicly funded, medical curricula reflect educators’ social responsibilities to their communities and patients. During curriculum renewal in the 1990s and 2000s, MD programs responded to these social obligations by developing and implementing Problem-Based Learning (PBL) and Evidence-Based Medicine (EBM). At the University of British Columbia, this wave of curriculum change was an opportunity to include anthropological perspectives and ethnographic methodologies in the MD program in a set of two new required, multi-disciplinary courses in Doctor, Patient, and Society. These courses brought together medical anthropology, epidemiology, community health, and medical ethics. Anthropology, community medicine, and medical ethics, in combination with PBL provided a more community and patient-centered orientation to complement epidemiology and EBM. By enabling students to conduct anthropological, ethnographic research in communities, and interview patients in their homes, students confronted the tension between epidemiological evidence and individual patient experiences. This ethnographically-based, patient and person-oriented approach helps prepare students for clinical interactions with patients who are also community members. It also equips them to meet the growing demands for personalized chronic care, and prepares them for emerging clinical fields including targeted cancer therapies and genomic medicine.
... In narrative approach, storytelling is understood as a fundamental way for humans to give meaning to their own experiences 18 . A chronic illness like fibromyalgia disrupts the coherence and continuation of the life story and can be understood as a 'biographical disruption' that threatens not only the body and mind, but also the sense of self as it was before the illness 19 . ...
... This seemed to collide with the earlier identity of 'a man with knowledge and skills' and lead to substantial changes in one's social roles at work, in the family and in the wider community. In health sociology, the concept 'biographical disruption' is used to describe a situation where the anticipated course of life is disrupted in a way that forces one to re-evaluate one's life, identity and future with the illness and despite it 18 . In our data, the cognitive problems were at first interpreted as common forgetfulness or absent-mindedness that everyone experiences occasionally. ...
Objectives
The purpose of the study was to explore the impact of perceived cognitive problems on daily life in men with fibromyalgia.
Method
The data were collected through life-story interviews of eight men with fibromyalgia. Narrative analysis was conducted to create model narratives that comprise the content and storylines across the data.
Results
Three model narratives are presented in the findings to describe the scope and severity of the cognitive problems. The participants’ experiences of cognitive problems varied from occasional concentration problems to severe and complex difficulties in memory, problem solving and verbal fluency. The impact of these problems on daily life was substantial and overshadowed the participants’ domestic life, social relations and work performance. In some cases, maintaining a role in working life was perceived as challenging.
Discussion
These patients are usually examined and treated in primary health care settings and the assessment tools and interventions should be applicable in these settings. More research is needed to develop effective interventions that address not only memory but also individual’s ability to solve complex problems and to work under pressure as well as the level of verbal fluency, which all are relevant issues in terms of work ability in contemporary society.
... Stories have the ability to provide insights into contextual circumstances most people may not have experienced first-hand (Mattingly and Garro 2001) and research exploring human stories is often considered as the 'flip-side' of established discourses (Bamberg 2004), able to challenge dominant societal narratives and 'carry rhetorical weight' (Mattingly and Garro 2001: 5) making it highly appropriate for feminist qualitative research seeking to challenge patriarchy and raise awareness about women's experiences. ...
This article reports on Creative Pause: a pilot research project, funded by Research England that explored creative responses to lived experiences of menopause and measured the effects on wellbeing. Menopause is a major part of the life course, yet its wellbeing implications remain poorly understood and this leads to negative impacts on lives. Despite recent media attention, there is a lack of understanding of lived experience and a lack of visible stories about menopause in literary texts and the arts. With creative workshops in poetry, dance, drawing and other embodied writing techniques, the project identified that workshops can support the wellbeing of people navigating this obscured stage in the life course. This collaborative, autoethnographic article co-produced by workshop participants (equally valued as researchers) and the research team uses dialogue, creative and reflective writing to explore the lived experience of menopause. It will show how creativity, specifically storytelling through writing, image, speaking and listening, or movement, can help not only navigate this transitional life stage but also raise awareness and consequently understanding. We argue that supporting people to tell and share stories that draw on lived experiences of the menopause can support them to navigate this liminal space.
... To preserve context-sensitivity and personal stories, we adopted a narrative approach in the data analysis (Garro & Mattingly, 2000). This approach was chosen because it was sensitive to the participants' experiences of their role and academic teacher identity. ...
... As described by Charmaz [18], the first-author took an inductive approach to grounded theory when coding for themes in line with a narrative-phenomenological theoretical framework [19] to focus data collection and analyses on significant experiences. Grounded in hermeneutic philosophy and narrative theory [19][20][21], narrative phenomenology foregrounds understanding the meaning of particular experiences of particular persons from their first-person perspective. As both narrative and phenomenological, this theoretical framework can be used to guide data collection around eliciting stories [22] to understand what is at stake or really matters for particular persons [23]. ...
Loneliness has been shown to be a predictor of poor health and early mortality in the general population. Older men living with human immunodeficiency virus (HIV) are at heightened risk of experiencing loneliness. Here, we aim to describe the lived experience of loneliness in older men living with HIV and identify targets for intervention. We used grounded theory with a theoretical framework of narrative phenomenology to focus data collection and analysis on significant experiences related to loneliness. Based on individual narrative interviews with 10 older men living with HIV, experiences of loneliness related to “multiple losses,” “being invisible” and “hiding out” as emergent themes. Participants also described living with loneliness by “finding meaning,” “creating social experiences,” “pursuing interests and things to ‘live for’” and attending events in which “everyone is welcome.” The discussion situates experiences of loneliness within the accumulation of losses and stigmas over time and how the participants strategies for living with loneliness could inform interventions to reduce loneliness in older men living with HIV at individual and societal levels.
... The tradition of the kitchen scholar (griot) is integral to African American storytelling: not just for entertainment but also as a tool of deconstructing dominant narratives and providing "real," experienced knowledge on a phenomenon from the perspective of the marginalized (Davis, 1999). The storytelling of memories is a tool for the transmission of identity and a trauma narrative, in which an individual articulates and processes personal and collective memories to achieve restorative transformation (Garro & Mattingly, 2000;Jackson, 2002). By doing so, individuals become the authors of their experiences. ...
Objective: Transmitting trauma narratives is intergenerational by nature. Few studies have taken a qualitative approach to analyzing the most pervasive trauma of the United States: the chattel slavery of Black people. Examining the lived experiences of the formerly enslaved, through their childhood and adult narrative memories of personal and second-hand interactions with White authority figures, is critical to the recognition of today’s ongoing impact of policing, generational trauma, and mental health in the African American community. Method: Using interviews archived in the Library of Congress from women (N = 19) who were identified as being members of the last living generation of formerly enslaved African Americans, researchers used a feminist-forward grounded theory methodology to understand the following: (a) What are the historical relationships between African Americans and White authority figures? (b) What are the memories associated with the interactions between African Americans and White authority figures? (c) How did these interaction processes come to be? and (d) How did these memories get passed on? Results: The analysis of childhood memories and interactions between enslavers and African Americans close to home (i.e., on the plantation) produced six themes: (a) enmeshment with enslaver, (b) enslaver as good, (c) caretaking by enslaver, (d) enslaver control, (e) violent control by policing figures, and (f) following orders. Theoretical coding led to the formation of a full model of the function of power within the herstorical policing of African Americans close to home. Conclusions: The themes uncovered highlight the potentially traumatic violence and control that characterized the environment in which enslaved children lived and the systems through which White power was maintained. The herstorical analysis and results confirm the ways police violence has sought to control and harm African Americans for over 400 years and underscores the role that police violence has played in the perpetuation of intergenerational trauma and the maintenance of White power.
... People's memories of the past are sometimes unreliable. Anthropological scholarship shows that people generally reconstruct narratives of past events in ways that are congruent with current understandings, and in ways that help derive meaning from experience (Garro and Mattingly 2000). Nonetheless, respondents were asked to recall their feelings towards the WMA five years ago (Fig. 6.3a), and the extent to which their attitude had changed since then (Fig. 6.3b). ...
How can humans and wildlife coexist? In the new book "Tarangire: Human-Wildlife Coexistence in a Fragmented Ecosystem", published @SpringerNature, we synthesize interdisciplinary research, highlight challenges & propose solutions that work for humans and wildlife.
... People's memories of the past are sometimes unreliable. Anthropological scholarship shows that people generally reconstruct narratives of past events in ways that are congruent with current understandings, and in ways that help derive meaning from experience (Garro and Mattingly 2000). Nonetheless, respondents were asked to recall their feelings towards the WMA five years ago (Fig. 6.3a), and the extent to which their attitude had changed since then (Fig. 6.3b). ...
We synthesize data on the ecology of large carnivores in the Tarangire Ecosystem (TE). Despite anthropogenic pressures, all large carnivore species (lions Panthera leo, spotted hyena Crocuta crocuta, striped hyena Hyena hyena, leopard Panthera pardus, cheetah Acinonyx jubatus, and wild dog Lycaon pictus) have persisted in this fragmented ecosystem consisting of multiple protected areas among a matrix of village lands. The focal species were widely distributed across land-use gradients. While the comparatively abundant spotted hyena permanently occupied village lands, other species only sporadically used these human-dominated areas. Across species, carnivores used village lands more frequently during the rainy season, possibly following seasonal shifts in the movement of prey species. These processes can increase human-carnivore interactions, expanding the potential for conflict. In some areas, leopards, lions, and striped hyenas reached high densities, whereas cheetahs and wild dogs occurred patchily and at low densities. Our review suggests that the existence of diverse protected areas contribute to the persistence of the large carnivore community. The persistence of lions, cheetahs, and wild dogs appears dependent on human-induced mortality and prey depletion. Conserving large carnivores in TE requires the application of interventions that reduce human-induced mortality while simultaneously conserving the spatio-temporal distributions of prey species.
... People's memories of the past are sometimes unreliable. Anthropological scholarship shows that people generally reconstruct narratives of past events in ways that are congruent with current understandings, and in ways that help derive meaning from experience (Garro and Mattingly 2000). Nonetheless, respondents were asked to recall their feelings towards the WMA five years ago (Fig. 6.3a), and the extent to which their attitude had changed since then (Fig. 6.3b). ...
Wildlife Management Areas (WMAs) are a particular conservation strategy in the Tarangire Ecosystem. WMAs aim to balance wildlife conservation with community livelihoods through the implementation of land use plans at the village level that restrict some human activities while allowing others. They also enable the central government to extract revenue from conservation tourism that occurs on village land. The creation of WMAs can lead to tensions among local communities, private investors, and government authorities as a consequence of competing interests within and across these stakeholder groups. On these grounds, WMAs have been criticized by social scientists, particularly in such instances where the resource rights of rural communities are marginalized. Few case studies to date, however, have employed representative sampling procedures and quantitative methods to assess community perspectives on WMAs. This chapter presents results from a proportionately weighted and randomly sampled survey of community attitudes towards Randilen WMA (n = 678) administered in 2020. The results speak to high levels of community support for Randilen WMA, and highlight people’s lived experiences of inclusion in conservation governance and management. Drawing from these findings, this chapter forwards an alternative perspective on WMAs, suggesting that they can show promise as mechanisms for reducing rangeland fragmentation and supporting people, livestock and wildlife.
... People's memories of the past are sometimes unreliable. Anthropological scholarship shows that people generally reconstruct narratives of past events in ways that are congruent with current understandings, and in ways that help derive meaning from experience (Garro and Mattingly 2000). Nonetheless, respondents were asked to recall their feelings towards the WMA five years ago (Fig. 6.3a), and the extent to which their attitude had changed since then (Fig. 6.3b). ...
Facilitating coexistence between humans and large carnivores is one of the most complex and pressing conservation issues globally. Large carnivores pose threats to human security and private property, and people may respond to those risks with retaliation which can jeopardize the persistence of carnivore populations. The nature of these interactions can be influenced by several variables including ecological, anthropogenic as well as political dimensions. The Tarangire Ecosystem (TE) of northern Tanzania is a stronghold for multiple large carnivore species. Despite multi-faceted and long-term carnivore conservation efforts being implemented in the ecosystem, the anthropogenic impacts on carnivore populations are pervasive. As only a portion of the TE is fully protected, the wide-ranging nature of carnivores brings them into close contact with people living among a matrix of village lands. Consequently, this ecosystem experiences high levels of human-carnivore conflicts. In this chapter, we synthesize the existing information to characterize the extent, impacts, and spatiotemporal patterns of human-carnivore interactions (which often result in severe conflicts, causing harm to people, livestock, and carnivores), examine the efficacy and challenges of implementing interventions designed to reduce human-carnivore conflict, and explore the socio-economic dimensions of these mitigation efforts.
... People's memories of the past are sometimes unreliable. Anthropological scholarship shows that people generally reconstruct narratives of past events in ways that are congruent with current understandings, and in ways that help derive meaning from experience (Garro and Mattingly 2000). Nonetheless, respondents were asked to recall their feelings towards the WMA five years ago (Fig. 6.3a), and the extent to which their attitude had changed since then (Fig. 6.3b). ...
In the Tarangire Ecosystem, elephants frequently use pastoral areas, where they interact with people and livestock. To characterize the elephant-livestock interface in Manyara Ranch, we used a social-ecological approach to capture the herders’ and the elephants’ perspectives of these interactions. We interviewed cattle herders to assess their perceptions of elephants relative to other wildlife species (n = 117 interviews) and observed how elephants responded to sound playbacks associated with humans and cattle relative to sounds of wildlife species (n = 300 playbacks). Most herders (86%) supported elephant conservation, and reported spatial avoidance of elephants as the main strategy to avoid negative interactions. Among eleven large mammal wildlife species, herders ranked elephants as the fifth most problematic species to cattle. Elephants frequently reacted (e.g., bunching, fleeing, shaking the head and moving the trunk, or approaching) to human-related sound playbacks (79% of playbacks), and reacted less frequently when exposed to sounds of cattle (62%) or wildlife (34%). Playback experiments suggested that while elephants primarily reacted non-aggressively when faced with livestock, aggressive elephant behavior may be triggered by human behavior. Evidence from both the interview data and the behavioral experiments suggest that coexistence between elephants and pastoralists is mostly facilitated by mutual spatial avoidance.
... The narrative approach, focusing on the relationships between individual experience, cultural context and the construction of meanings (Garro and Mattingly 2001), was applied by means of biographical interviews that elicited experiences of food deprivation in order to shed light on how people with limited resources navigate the continuum between food security and insecurity. The verbatim transcriptions of the interviews were digitalized using the ATLAS.ti ...
This work analyzes the relationship between the precarization of everyday life and the increase in food insecurity in Catalonia (Spain). Based on an ethnographic analysis of the food itineraries of a group of people in a situation of precarity, this article examines their lived experiences under the pressure of having to meet daily food needs. The results show that gender differences are significant in terms of the strategies adopted, particularly in the forms of acquisition and preparation, places of consumption and support networks. Given that women are largely responsible for feeding the household, they are the ones most often managing the attendant difficulties. In situations where access to food depends on diverse and irregular sources, they engage in practices that both protect the family group’s basic need to eat and sometimes compromise their own health, eating less than is usual and/or sufficient, skipping meals or even, on occasion, going hungry. The study concludes that providing food involves a crucial set of knowledge and skills for social reproduction that is not incorporated into existing emergency programs, with specific actions to avoid gender inequality likewise being omitted. The article proposes that both issues be discussed and taken into account in health and social policy. This study analyzes a subject that has scarcely been addressed in Spain. The challenge in investigating food insecurity from a gender approach is not only to make visible the crucial roles of women in food security and their contribution to it but also to show how the process of precarization manifests itself unequally across households
... They also empathized and identified with the character, that is, they were emotionally moved by the characters' struggles and saw themselves within the characters' stories (Burke, 1969a;Singhal & Rogers, 1999). In their responses, the audience demonstrated that they too engaged in the construction of the T2DM narratives by actively editing, intentionally making inferences about what it feels like to have that experience and explaining subsequent behaviors that impacted them as listeners (Garro & Mattingly, 2000). ...
... Stereotypes have been harmful to the integrity of Islam and have negatively influenced perceptions of how Muslim parents consider the welfare of their children (Haddad et al., 2006). Counter narratives with 'rhetorical weight' (Garro and Mattingly, 2000) are needed to challenge dominant discourses by offering alternative conceptualisations to uncritical narratives. The congruence between Islamic values and Western child protection models should be emphasised to that effect (Hutchinson et al., 2015;Ashencaen Crabtree et al., 2017). ...
The care and protection of children are a concern that crosses ethnic, religious and national boundaries. How communities act on these concerns are informed by cultural and religious understandings of childhood and protection. Islam has specific teachings that relate to the care and guardianship of children and are interpreted in diverse ways across the Muslim world. Islamic teachings on child-care mostly overlap with Western understandings of child protection, but there can be some contested positions. This creates complexities for social workers intervening in Muslim communities where the basis of their intervention is primarily informed by a non-Muslim paradigm or occurs in secular legal contexts. The purpose of this article is to address at a broad level the issue of how overarching concepts of child protection and Islam influence social work practice with Muslim communities. It addresses a gap in practical applications of the synergy of Islamic thinking with core social work practice in the field of child protection. For effective practice, it is argued that social work practitioners need to consider common ground in Islamic thinking on child protection rather than rely on Western frameworks. This requires further research to build evidence-based practice with Muslim families.
... It has been previously argued that reminiscence and storytelling is the work of the old, the process by which older people come to terms with, and prepare for the end of their lives (Butler 1963;Kenyon and Randall 2001). Storytelling draws together events, places, oneself and other people into coherent narratives that at the same time construct the storyteller and the characters within it, as particular kinds of people (Garro and Mattingly 2000;Jaye et al. 2015). In addition to the construction of characters as protagonists and antagonists, good and bad, innocent and guilty, stories frequently offer a significant message, or contain a moral lesson. ...
In this essay I contend that the aged care sector not only constitutes a political economy, but is at the same time a moral economy containing multiple contested moral spaces, purposes and standpoints. Global processes of cosmopolitanisation contain moral agendas that link macro level structures with local communities, families, individuals, workplaces, and organisations. The aged residential care (ARC) facility as a moral economy exemplifies vernacular cosmopolitanisation. The State shapes the moral economy of the New Zealand aged care sector through enforceable policies and regulations, while organisations and facilities compete in a neoliberal consumption-oriented marketplace. Those employed in the sector such as nurses and careworkers seek a living. Residents must find home within ARC, while their families expect they receive quality care from ARC facilities.
... By telling illness stories, protagonists do not necessarily reveal clinical and physical facts about being ill, but rather how they experience illness accompanied by and embedded in complex negotiations in everyday social life. When people tell stories, they make references to individual logics of seeing the world and how they are involved in it and to people being part of it (Mattingly and Garro 2000;Wikan 2000;Hunt 2000). For this reason, starting fieldwork by exploring participants' illness stories gave us an impression of their experiences and feelings related to illness and treatment. ...
Little is known about how people living in the aftermath of cancer treatment experience and manage worries about possible signs of cancer relapse, not as an individual enterprise but as socially embedded management. One-year ethnographic fieldwork was conducted in a coastal village of under 3000 inhabitants in northern Norway. Ten villagers who had undergone cancer treatment from six months to five years earlier were the main informants. During fieldwork, the first author conducted qualitative, semi-structured monthly interviews with them, and participated in their everyday activities and relationships, including families, friends and co-villagers. In this article, we contemplate human emotions as arising in contexts of transactions, capable of creating social realities. By including this perspective, we highlight how people who recover from cancer construct and experience worry about possible relapse in relation to close family members, friends and co-villagers in the socially closely-knit and relatively isolated village. These emotional experiences emerge through relationships with others have communicative characteristics and take place in interaction with the social environment of their village. While informants attempt to protect family members by avoiding sharing worries with them, they express the need to share their worries within friendships. However, they experience both comfort and challenges in managing their worries in relation to acquaintances in the village. Overall, the study enhances understanding of the social embeddedness of emotions in everyday life, by revealing how worries of relapse of cancer configure and relate to various social contexts.
Objetivo: analizar la medicina tradicional de Tlacolula de Matamoros, Oaxaca, durante la pandemia de COVID-19 para mostrar su incidencia en la salud de la población. Metodología: etnografía y análisis de los testimonios orales de las personas entrevistadas sobre su experiencia personal. Resultados: mientras que las autoridades atendieron la pandemia apegándose al discurso oficial, aunque con medios insuficientes, las curanderas se ocuparon de los diversos padecimientos de la población, incluido el COVID-19, con los recursos propios de la medicina tradicional. Limitaciones: debido al contexto de la pandemia, se entrevistó solo a tres curanderas de comunidades diferentes. Valor: se da a conocer el papel protagónico, la revitalización de la medicina tradicional y su reapropiación de los espacios públicos y privados en condiciones de pandemia cuando se convirtió en modelo de atención médica. Conclusiones: durante la pandemia cursada en México, la hibridación de la medicina tradicional con la medicina hegemónica contribuyó de manera considerable a la disminución de la morbimortalidad de personas de escasos recursos económicos.
Staging numbers powerfully shape breast cancer narratives. Used by physicians to tell women about their breast cancer diagnoses, these numbers are integral to treatment decision-making. In women's calculus of survival, staging numbers portend hope and dread; they speak to how much lifetime remains. Drawing on 92 interviews with breast cancer survivors in California, the author argues that staging numbers represent, and function as, a form of illness narrative. Similar to more traditional illness narratives, they impart meaning to the cancer experience; they create order and temporal orientation. Numbers also offer women a way of negotiating possible alternative narrative endings. However, numbers do not capture the richness of lived experience and are, therefore, limited guides to treatment decision-making. Physicians can learn from cancer survivors' understandings of staging numbers how to communicate prognoses more effectively; they can become better collaborators in constructing narratives that focus on living a life, and not the fear of life's ending.
This book foregrounds the importance of narrative as a conceptual paradigm for understanding mental health issues and of stories as an alternative source of knowledge and expression in an area where humans are and should be at the center of attention: mental health. The volume also opens vistas onto potential limitations of narrative paradigms, especially when coupled with normative expectations of truthfulness, coherence, and comprehensiveness. Narratives surrounding mental health are intertextually and culturally embedded in a constantly evolving and transforming web of narratives, whether it is in research and treatment practices in psychology and psychiatry, the professional categorization and definition of mental health issues, people’s own definitions of mental health, or medial as well as artistic representations of different mental health states. The book investigates the nexus between narratives and mental health from an interdisciplinary perspective, offering a dialogue between psychology and psychiatry and other fields such as social work, linguistics, philosophy, literary studies, and cultural studies. Contributors from various disciplines and countries across the globe address questions surrounding mental health and illness in individual and cultural stories while also attending to their mutual influence. Narrative interviews, narrative psychology, narrative therapy, diary writing, and psychodynamic processes are explored alongside oral history, news media, graphic novels, film, fiction, and literary autobiographies. Mental health emerges as a dynamic concept that is subject to change over time and that therefore deserves close attention both in research and practice—attention that narrative paradigms are well suited to offer, albeit not exclusively.
Contested illnesses, such as fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic Lyme disease (CLD), are surrounded by polemic debates regarding their etiology, symptomology, treatment, and even their existence. People who suffer from these contested illnesses arguably also suffer from "epistemic injustice." This concept, coined by the philosopher Miranda Fricker, captures how people's knowledge may be discredited because of identity prejudices. In our paper, this concept is used to understand how seven Dutch women with contested illnesses experience the emancipatory potential of their vlogging practices. Our findings show how these women understood their vlogging as a means to break with epistemic smothering, understood as the propensity to cater ones testimony to one's audience (Dotson, 2011), and as a means to attain and enhance epistemic justice. However, our findings also show how vlogging about contested illnesses did not seem to allow these women to fully break with their epistemic smothering practices, and that the ableist design and gendered norms of YouTube were experienced as obstacles to attaining epistemic justice. We conclude that, even though social media do seem to hold emancipatory potential for these women, the experiences of individual users are diverse and ambiguous.
The Covid-19 pandemic has spotlighted the relationship between mobilities and gender-based violence (GBV). The national lockdowns across the world have im/mobilised people, creating extraordinary social proximities that have been associated with a ‘shadow pandemic’ of violence. Before the pandemic, GBV was often im/mobilised in academic and policy thinking in that it was located in unconnected static sites. This article is based on a transdisciplinary project that seeks to produce understandings of GBV in the Covid-19 pandemic, using the heuristic lens of im/mobilities. The project aims to do so through the creation and analysis of personal stories detailing experiences of GBV across the UK. These stories are in the form of existing first-hand accounts on campaign websites, magazines and newspapers. Through them this article investigates how im/mobilities precipitate gendered violence, both felt and experienced, and examines how embodied experiences become situated in mobile spaces—inside, outside and online—in the context of the Covid-19 pandemic. In doing so, it evolves the concept of im/mobilities.
The ability of doctors to empathise with patients is a crucial concern in establishing humanistic medicine. Therefore, the cultivation of this ability has been discussed extensively in medical education. One theory suggests that the experience of patienthood can increase empathy among doctors. This theory is supported by previous research that published doctors’ illness narratives. However, the concept of empathy has been ambiguously defined in academic fields, including medicine; therefore, analysing how doctors experience ‘empathy’ in their interactions with patients is difficult. Our research question is how doctors who became patients describe the relationship between their illness experiences and the interactions with patients after their illness. To this end, this paper initially tracks the debates on ‘empathy’ in medicine and other disciplines, to develop a lens for analysing doctors’ illness narratives. Next, we conduct a narrative analysis of illness stories from 18 Japanese medical doctors who became patients. Our analysis supports the traditional idea that an illness can enable a doctor to become more empathetic. However, this is overly simplistic; how doctors experience and subsequently process their illness is more complex. Moreover, this notion can disregard doctors’ suffering in these circumstances, and fail to represent the often-lengthy process of mastering ‘empathy’ based on their experiences. Therefore, our analysis deconstructed the concept of ‘empathy’, showing that it can appear in various ways. Further research is required to elucidate how empathy is cultivated during the process of transformation of doctors’ illnesses, focusing on their communities and practices.
The pandemic diary on social media is a special form of online communication. Studying individual narratives in social networks during the pandemic and post-pandemic periods can help us generate valuable knowledge about the behaviors of media users and the function of social media in a public health crisis. This research focuses on psychological relief in virtual public spaces and explores how social media individual narratives affect people’s psychological health in a state of emergency from the perspective of narrative theory. Based on 19 in-depth interviews with Chinese diary writers, it has been found that the narrative genres of the pandemic diary were mainly Restitution and Quest narrative, while a few were categorized as “Restrained chaos” narrative. The purpose of editing pandemic diaries is to communicate both inwardly and outwardly. The pandemic diary can promote self-relief, public communication, emotional drive, meaning connection, and identity construction in public spaces, thus helping shape a sense of unity and belonging, and facilitating the psychological reconstruction of people who are vulnerable to potential mental health crises.
The purpose of this article is to discuss the possibilities and challenges of qualitative research for studying the lifeworlds of people living with dementia. Historically, people with dementia have been widely neglected within qualitative research, being considered too incoherent or unintelligible. Though this has been contested, methodological challenges remain. Building on fieldwork among people with Alzheimer's disease in Denmark from 2019-2021, we argue that ethnographic methods have the potential to grasp the non-verbal presence and interaction crucial for describing “the moods” of social encounters and people's “signature”. Yet, at the same time, the people who participated in the study were still trying to tell stories, highlighting the importance of also paying attention to their verbal expressions, however fragmented they may be. We use the term “fragile stories” and “fragile storytelling” referring to how people with Alzheimer's easily become distracted from the topic of conversation. Fragility implies the possibility of breaking, if not handled with care. Losing one's words risks derailing attempts to tell a story, and hence the sense of coherence and continuity, while also challenging the conversational partner's ability to properly relate to the story being told. Doing fieldwork among people with Alzheimer's highlights the fact that knowledge creation is an ongoing dialogic process, in daily life and in research. With inspiration from the concept of wayfinding (see Ingold 2021), we propose that the researcher must go along with the fragile stories by continually attuning to the person with Alzheimer's shifting modes of being. By doing so, the researcher can help the stories come into being by not just being present and listening with patience, but through guessing and filling in.
This chapter analyses the relationship between the growing precariousness of daily life, food insecurity and the measures taken to tackle in Spain. As in other European countries, the administration has addressed the rising social demand for food assistance by strengthening and institutionalising a broad network of non-profit organisations that usually – though not exclusively – manage it under the guidance of the municipal social services. Based on the ethnographic analysis of the food itineraries of a group of people in a precarious situation, this text outlines their lived experiences in Catalonia dealing with the stress of having to meet daily food needs using their own and others’ resources. Due to their flexibility, the food itineraries reflect the changing nature of the practices and knowledge that people deploy in each situation/stage, underlining the importance that all the formal and informal support networks acquire in urban contexts when it comes to managing food assistance.
Worldwide, the Covid-19 pandemic has transformed teaching contexts rapidly. Studies on the effects of the Covid-19 pandemic have largely focused on students’ learning and well-being. In contrast, little is known about how emergency online teaching affects teachers. The aim of this study was to examine how disrupted teaching contexts during the Covid-19 pandemic affected academic teacher identities in health science education. Interviews were conducted with 19 experienced lecturers in health science education from two universities. Interview data were analysed using systematic text condensation. The established codes were compared across interviews to identify common themes and subsequently synthesized into descriptions of the emerging phenomena. Findings indicated that a form of embodied teacher identity, i.e. internalized teaching practices turned into dispositions, constituted a basic pedagogical condition and a resource for the teachers, and that the sudden change in the teaching context caused a loss of teacher identity. This identity loss was related to an incorporated understanding and use of the teacher’s sense of the classroom (subtheme 1), non-verbal feedback from students (subtheme 2) and reciprocal visual contact (subtheme 3). Data also indicated that teachers’ ability to adapt their teaching to students’ needs while teaching and teachers’ motivation and job satisfaction may have suffered. Universities should carefully consider how to cultivate sustainable and adaptive teacher identities compatible with the increasing digitalization of learning environments. Teaching is an embodied affair, and teacher identities are sensitive to structural changes in teaching contexts.
This article examines the extent to which the 2008 economic crisis has led to a shift in ways of eating among people living in precarious conditions in Spain, and the kinds of strategies they have developed to obtain daily food. Building on a literature review on precarisation in Spain and an analysis of action plans to combat food insecurity, participant-observation ethnography was carried out in Catalonia. Fieldwork was conducted during 2017–2019 in public and private spaces focusing on the food practices of 51 first-time applicants for social assistance. Qualitative data obtained from interviews and direct observation were recorded, transcribed and coded using the ATLAS-ti program to facilitate thematic analysis. Study participants’ oral narratives reveal substantial changes in food procurement and eating practices. Strategies include buying different foods, shopping less often and/or in different stores, seeking out cheaper brands, preparing simpler dishes, growing food and recycling leftovers. Their food itineraries reflect increasing reliance on charities, although a common alternative is meals prepared outside the home by family, neighbourhood, activist organisations or themselves. Eating patterns reveal not only experiences of food deprivation and social suffering, but also alternative ways of food procurement. Although food aid is based mainly on an assistance-oriented model, participatory initiatives have the potential to become political spaces that invite us to rethink the distribution of food resources and the limitations of social policies.
In recent decades, there have been many calls for the inclusion of spirituality and religion (S/R) in therapeutic contexts. In some contexts, this has been an institutionalized form of spiritual and religious assistance (SRA). This article examines the concepts and practices involved in SRA services at three psychiatric institutions in Portugal, a country with strong Catholic roots but increasing efforts at secularity and recognition of religious diversity. The case of a user who contacted the SRA service allows us to better grasp this new practice in action. Although some SRA practices have similarities with mindfulness, a systematic comparison allows us to explore the links between SRA and the global dynamics related to S/R in mental health and the particularities of Catholic spirituality. In the contexts observed, the transition from the Catholic hospital chaplaincy system to the SRA model is developing through the integration of features of the Catholic spiritual tradition with concepts and practices drawn from the psychology of religious experience. The accompaniment of the ‘whole person’ emerges as the central concept of this form of SRA. Spirituality gains significance as an integrative approach to the subjectivity fragmented by the illness and the fragmentation of care across multiple clinical specialties. Furthermore, the prioritization of the spiritual needs expressed by users suggests that SRA combines well with the individualistic rationales and the technification of care in the field of mental health.
This article describes a process of creating an ethno-graphic comic about injection drug use and hepatitis C, based on long-term ethnographic fieldwork in Norway. The project and the graphic publication titled The Virus were a collaboration between a social anthropologist, a graphic artist, and individuals who inject illegal drugs and are aimed at reducing bodily, social, and narrative harms related to drug use. The article argues that structurally informed interventions, such as this project, which account for the social, economic, and epistemo-logical inequalities, benefit from taking phenomeno-logical perspectives seriously. In our case, that attitude meant including participants' positive associations with their current or former heroin and injecting drug usage, their stigmatized desires, and their emotions-such as love-related to the disease. The article describes the narrative, conceptual, aesthetic, and practical choices encountered in making The Virus to confront the dominant , authorized narratives in the field of drug use and hepatitis C. We sought to make choices that ultimately would not contribute to the (re)production of the very object of the prevention-stigma related to hepatitis C-but instead would create a new narrative(s) that forged a sense of purpose, recognition, and humanity.
Different scholars have emphasised the psychological distress experienced by health workers during the COVID-19 pandemic; however, there are almost no qualitative studies and we know very little about the everyday experience of this group. The present study's goal was to explore how health workers interpreted the meaning of the pandemic crisis in their life. An online survey was available during the Italian lockdown. Respondents were asked to write a passage about the meaning of living in the time of COVID-19. A total number of 130 questionnaires (M = 42.35; DS = 10.52; women: 56.2%) were collected. The Automated Method for Content Analysis (ACASM) procedure was applied to the collected texts to detect the factorial dimensions underpinning (dis)similarities in the respondents' narratives. Such factors were interpreted as the markers of latent dimensions of meanings (DS). The two main DS that emerged were characterised by the pertinentisation of two extremely basic issues: what the pandemic represents (health emergency versus personal crisis) and its impact (powerlessness versus discovery of new meanings). On the whole, health work-ers' narratives help to highlight the risk of normalising the feelings of fear and impotence experienced when facing the health emergency and the need to recognise that such feelings are strictly intertwined with the limited resources received to "face the battle"; the need to recognize the human vulnerability of the women and men "inside the lab coat" and the human effort to maintain or reconstruct a sense of self and purpose in the face of troubled circumstances.
In this chapter we analyse the relations between historical maps included in textbooks and the narrative constructions of the past. The historical map is a contemporary pedagogical device that depicts the configuration of territory through human action, but most importantly, it explains historical phenomena led by connections of causality and historical context. In this sense, these types of map provide comprehensive historical accounts of key historical issues for particular social contexts. This suggests that the historical map represents national territory while at the same time recreating national master narrative. This is a little-studied topic in history education, which requires understanding of master narratives' structure and functioning. Thus, we present a case analysis of the subject based on Carretero's theoretical model of national master narratives in history education. Ultimately, we also aim to contribute to enhancing the knowledge of historical space as a key concept of history education. The spatial dimension is essential for historical thinking, and a cornerstone in people's explanation of history. Fixed spatial notions of where the events take place underpin the construction of historiographical knowledge and national historical narratives, as well as the personal storytelling of the past.Training students and citizens to better understand historical maps may help them to develop a deeper and more nuanced understanding of history.
Disaster Storytelling has become a topic of interest in various fields that address disaster risk reduction. The purpose of this study is to establish this concept as a tool for building a disaster-resilient society. An extensive literature survey showed that Disaster Storytelling has two major functions: disaster education and promoting recovery from disasters. This study shows that these two functions can be attributed to reciprocity, which is inherent in storytelling. Our primary conclusion is that, along with recent trends in Disaster Storytelling, such as disaster tourism, the practice will be expanded, the network of Disaster Storytelling activities will be reinforced, and Disaster Storytelling will contribute to the development of a more resilient society.
This article analyses Chongqing Daily ’s narratives about the front-line workers during the pandemic outbreak and their role in containing the Covid-19. These narratives foreground the disruption of filial connections and family life of those on the front lines as well as the physical toll their work takes on the bodies of these workers. By highlighting the suffering of front-line workers through familiar experiences relating to the body and family connections, this article argues that these narratives enabled inter-subjective connections between the front-line workers and the rest of the population and, therefore, helped foster a feeling of solidarity among the population in controlling the virus. The descriptions about the practices of front-line workers in the quarantined areas and their social moral meaning also functioned as action models and explanatory frameworks for the public to rationalize and assign meaning to the behaviour required of them during the lockdown period, and thus encouraged a shared commitment to combating the virus. Thus, the Chongqing Daily narratives strengthened the social cohesion in Chongqing and helped unite the population for a total war against the pandemic.
Chinese women have lived through huge societal changes. This article aims to explore women’s lived experiences as mothers over three generations under such transformations, specifically how women’s childrearing practices are distinctively constructed and how each generation of women makes their own mark on such constructions. The study of what women do in their everyday lives creates methodological challenges. In the study on which this article draws, a biographical narrative interview method was applied and adapted to take into account the researcher’s impact on the co-construction process of the interviews and to understand some ‘untellable’ stories. Three detailed cases are analysed to demonstrate individual woman’s struggles and achievements when acting on the particular ideological contexts of the periods in which they were mothers.
The study reflects adaptation and economical working mechanisms of a selected religious community of expatriates (reformed Evangelists who came from south-eastern Moravia) that in the mid-19th century settled in the multiethnic village of Velké Srediště in current Serbian Banat. The migration of monitored colonists from Central Europe was associated with the process of overcoming the moment of discontinuity (leaving the place of origin) through their adaptation in the new settings. The text presents institutional mechanisms that were used by the newcomers to overcome the stage of discontinuity, which brought doubts on the future life in the new settings. Based on written sources we assume a thesis that this social group brought a functioning social organization from Moravia to southern Hungary – an autonomous congregation community with own standards, forms of farming, confessional school and family religious education. The follow-up to the pre-migration model of a religious organization translocated by migration participants was based on the fact that it was time-honoured, tested and functioning. Through examples of several practices of this adopted model I argue that this was a social practice which significantly facilitated and accelerated the process of gradual adaptation in the new settings.
Haemophilia in Aotearoa New Zealand provides a richly detailed analysis of the experience of the bleeding disorder of haemophilia based on longterm ethnographic research. The chapters consider experiences of diagnosis; how parents, children, and adults care and integrate medical routines into family life; the creation of a gendered haemophilia; the use and ethical dilemmas of new technologies for treatment, testing and reproduction; and how individuals and the haemophilia community experienced the infected blood tragedy and its aftermath, which included extended and ultimately successful political struggles with the neoliberalising state. The authors reveal a complex interplay of cultural values and present a close-up view of the effects of health system reforms on lives and communities. While the book focuses on the local biology of haemophilia in Aotearoa New Zealand, the analysis allows for comparison with haemophilia elsewhere and with other chronic and genetic conditions.
Drawing on ethnography from central Greece, this article is about the way people narrate their encounters with the devil. Although it echoes the idea that life as told and life as lived are structured in the same way, it takes the argument a step further by suggesting they are structured through a narrative plot wherein the present and the future of the story‐tellers pre‐date the past of which their stories tell. It also foregrounds the link between this structure and a particular kind of morality which replicates the narrative logic of the stories, giving rise to an inherently relational personhood – a personhood that, just like the way in which its narration destabilizes the logic of before and after, destabilizes the distinction between self and other. Lastly, contextualizing the current economic crisis in the lives of such persons, the article suggests we need to think of it in relation to the devil and the stories people tell of him.
I offer my former experiences coping with adolescent cancer as evidence to warrant my exploration into coping as a narrative and performative matter of identity. I articulate coping as performative and narrative apperception, wherein the act of coping can be a performative act reflexively tethered to narrative identity, and entrenched in sociocultural constructs. I argue that (a) a cancer diagnosis and cancer narratives are language in action; (b) there is a liminal and uncertain state of all cancer patients, and adolescent patients in particular; and (c) narratives and their discursive structures create, and are created by, performed actions, narratives, and identities.
Drawing on conversations around issues of morality and politics carried out with Israeli soldiers who served in the occupied territories during the second Palestinian uprising (during the 2000s), Goodman examines how subjects abandon accepted political standpoints and act politically. He argues that changes in a person’s political views and actions do not happen abruptly as may be conceived following a Christian conversion tale. Furthermore, political and moral matters are not explicitly and clearly expressed in themselves. Often they are mediated within meaningful frameworks: army regulations, being part of a group, and the like. Service in the Israeli military is especially depoliticizing, but he suggests that this point could be applied to other milieus, not only in situations that quite deliberately try to downplay the political.
The importance of witnessing broken narratives and somehow writing or representing these is matched by the challenges associated with trying to do this within a context of normativity and expected academic practice. We have to be convincing in our work, both in terms of rigour and dependability but also in terms of the way we make sense of the stories we are told. In this essay, I examine the narrative of John, a 63-year-old British man diagnosed with autism. I explore how, by interrupting John’s narrative in search of the story I wanted and anticipated, I was disrupting his attempts to understand, form and reform his experiences within the interview setting. I argue we have a commitment to ignore the ‘rules’ of interviews and narrative in order to open up space for people to explore and make sense of their experiences beyond the tyranny of our research questions.
Research on autism spectrum disorder (ASD) and on Alzheimer’s Disease (AD) and other types of dementia describes a behaviour called ‘wandering’, a term that denotes movement through space lacking intention or exact destination, as when a person is disoriented or not self-aware. In the U.S., ‘wandering’ in both ASD and AD has been examined mostly from a management and prevention perspective. It prioritizes safety while primarily overlooking personal experiences of those who ‘wander’ and their families, thus limiting the range of potentially effective strategies to address this issue. Communicative challenges faced by many people diagnosed with ASD and AD further obscure the experiential, existential aspects of ‘wandering’. This article reflects an increasing concern of social science scholars interested in whether and how the conceptual and practical strategies to address ‘wandering’ are informed by the situated experiences of people with cognitive and developmental disabilities and their families. We examine ‘wandering’ at the intersections of personal experience, family life, clinical practice, public health policy, and legislation, as a conceptually rich site where notions of personhood, subjectivity, intentionality, and quality of life powerfully and consequentially converge to impact the lives of many people with ASD and AD, and their families. We draw upon critical autism studies describing how attributions of personhood, subjectivity, intentionality, rational agency, and moral autonomy of people with ASD have been contingent upon the norms and conventions governing movement of the human body through space (Hilton, Afr Am Rev 50(2):221–235, 2017). When this movement is deemed aberrant, the person may be construed as irrational, a danger to self because of a lack of self-awareness, and a danger to others because of a lack of empathy. These attributions put the person at risk of being excluded from the considerations and, more importantly, the obligations of the ‘moral community’ to ensure that he or she has a ‘good human life’ (Barnbaum, The Ethics of Autism: Among Them but not of Them. Indiana University Press, Bloomington, 2008; Silvers and Francis, Metaphilosophy 40(3/4):475–498, 2009). Using ethnographic, narrative phenomenological (Mattingly, The Paradox of Hope: Journeys through a Clinical Borderland. Berkeley: University of California Press, 2010), and medical humanities (Charon, JAMA 286:1897–1902, 2001; Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press, 2006) approaches, we examine multiple perspectives on ‘wandering’ in ASD and AD across narrative discourse genres, institutional contexts, and media of representation. We argue for an extension of the prevention and management view to focus not only on safety but also on what phenomenologist Merleau-Ponty (1962) called “having a world” (p. 146). The analysis is intended to inform clinical practice, policy and public health efforts to enhance understanding of first and second person perspectives on ‘wandering’ in order to improve the participation and quality of life of people with ASD and AD who ‘wander’, and their families.
Contemporary biological and digital health technologies disrupt people’s bodies and lives in various ways. One significant way in which people respond to this disruption is by narrating stories about their lives and how these technologies fit within them. This theme of storytelling appears repeatedly across ethnographic explorations of specific health technologies, yet there has been little exploration of the significance of how this plays out comparatively across different technologies. I draw upon ethnographic studies of three health technologies – cadaveric organ donation, commercial surrogacy, and self-tracking digital health technologies – to analyse some common threads of these ‘health technology narratives’. Narrative forms differ across the technologies and different groups of users, but these stories all position their subjects as agentive in the face of these challenges. However, when even seemingly empowering narratives become hegemonic within a community of users, this can also marginalise users of these technologies whose experiences do not conform.
In this final chapter, I explore the promise and pitfalls of Paleo from the perspective of the diet’s adherents, and its detractors. Pursuing Paleo can result in substantial positive changes for some, including weight loss, improved health and participation in supportive communities. However, not all have positive experiences, and I explore the problems people describe in their Paleo journeys. The diet has been subject to varied critiques from the scientific community, which I outline, along with the potentially negative implications of Paleo uptake in ecological and animal welfare terms. Finally, I argue that while it is cast as a form of resistance to neoliberalism’s failings, it is very much a product of the dominant politico-economic system, from which its high-profile proponents are profiting considerably.
ResearchGate has not been able to resolve any references for this publication.