Tracing Hybrid Collectives of Illness, War, and Medicine in Twentieth- and Twenty-First Century Narratives of Illness

Thesis (Ph.D.)--University of Washington, 2016-06

The illness narratives of Hispanic American women with coronary heart disease (CHD): An ethnographic approach

Purpose. To provide a descriptive representation of the illness narratives described by Hispanic American women with CHD. ^ Design. Focused ethnographic design. ^ Setting. One outpatient general medicine clinic, one nurse-managed health promotion clinic, and informants' homes in a large metropolitan city located in southeast Texas. ^ Sample. Purposeful sampling from two different sites resulted in 17 interviews being conducted with 14 informants. ^ Method. Focused ethnographic techniques were employed in the designation of participants for the study, data collection, analysis and re-presentation. Audiotaped interviews and fieldwork were transcribed verbatim and analyzed through an iterative process of data reduction, data display, drawing conclusions and verification. ^ Findings. The developing conceptual framework that emerged from the data is labeled after the overarching experience described by informants, the experience of Embodied Exhaustion. Embodied Exhaustion, as described in this study, refers to an ongoing, dynamic, indeterminate experience of mind-body exhaustion resulting from a complex constellation of biologic, psychological and social distresses occurring over the life course. The experience consists of three categories: Taking Care of Others, Wearing Down and Hurting Hearts. Two stabilizing forces were identified: Collective Self and Believing in God. ^ Conclusions. The findings of this study emphasize the importance of framing all research, theory and practice targeting Hispanic women with CHD within a sociocentric paradigm. Nursing is challenged to provide care that extends beyond the physical body of the patient to include the social context of illness, especially the family. ^

Should female health providers be involved in medical male circumcision? Narratives of newly circumcised men in Malawi

Background The Malawi government has endorsed voluntary medical male circumcision (VMMC) as a biomedical strategy for HIV prevention after a decade of debating its effectiveness in the local setting. The “policy” recommends that male circumcision (MC) should be clinically based, as opposed to the alternative of traditional male circumcision (TMC). Limited finances, acceptability concerns, and the health system’s limited capacity to meet demand are among the challenges threatening the mass rollout of VMMC. In terms of acceptability, the gender of clinicians conducting the operations may particularly influence health facility-based circumcision. This study explored the acceptability, by male clients, of female clinicians taking part in the circumcision procedure. Methods Six focus group discussions (FGDs) were conducted, with a total of 47 newly circumcised men from non-circumcising ethnic groups in Malawi participating in this study. The men had been circumcised at three health facilities in Lilongwe District in 2010. Data were audio recorded and transcribed verbatim. Data were analysed using narrative analysis. Results Participants in the FGDs indicated that they were not comfortable with women clinicians being part of the circumcising team. While few mentioned that they were not entirely opposed to female health providers’ participation, arguing that their involvement was similar to male clinicians’ involvement in child delivery, most of them opposed to female involvement, arguing that MC was not an illness that necessitates the involvement of clinicians regardless of their gender. Most of the participants said that it was not negotiable for females to be involved, as they could wait until an all-male clinician team could be available. Thematically, the arguments against female clinicians’ involvement include sexual undertones and the influences of traditional male circumcision practices, among others. Conclusion Men preferred that VMMC should be conducted by male health providers only. Traditionally, male circumcision has been a male-only affair shrouded in secrecy and rituals. Although being medical, this study strongly suggested that it may be difficult for VMMC to immediately move to a public space where female health providers can participate, even for men coming from traditionally non-circumcising backgrounds.

Narratives of mitigation : sentencing Indigenous criminal defendants in South Australia’s Higher Courts

In their statistical analyses of higher court sentencing in South Australia, Jeffries and Bond (2009) found evidence that Indigenous offenders were treated more leniently than non-Indigenous offenders, when they appeared before the court under similar numerical circumstances. Using a sample of narratives for criminal defendants convicted in South Australia’s higher courts, the current article extends Jeffries and Bond’s (2009) prior statistical work by drawing on the ‘focal concerns’ approach to establish whether, and in what ways, Indigeneity comes to exert a mitigating influence over sentencing. Results show that the sentencing stories of Indigenous and non-Indigenous offenders differed in ways that may have reduced assessments of blameworthiness and risk for Indigenous defendants. In addition, judges highlighted a number of Indigenous-specific constraints that potentially could result in imprisonment being construed as an overly harsh and costly sentence for Indigenous offenders.

Self-narratives of children : using digital journals

This paper takes the position that children are at risk of being marginalised when research methods are not tailored to their requirements. In particular, children who are negotiating early adolescence are presented as an ideal group for involvement with narrative research approaches that attempt to be flexible and creative. With the premise that the need to juggle multiple realities within complex societal structures is challenging and isolating for such children, narrative methods offer a promising mode of access to their individual realities. Children's own self-narratives in the form of email journal entries are proposed as research tools that can help to minimise issues arising from resistance to adults and problems of shared vocabulary that may occur using more traditional methods. Digital journaling, as a means of capturing self-narratives, can provide a convenient space for young people to generate and share their own personal accounts of their lives and their experiences that can also serve to inform others. Guidelines are offered for how to manage a journaling project that is not reliant on children's physical presence within school settings. Digital journals are thus described as multi-function mechanisms that can support personal growth as well as promote shared understandings and social fairness between adults and children.

Gimmelife : listening for dialogic voices in the email self-narratives of gifted young adolescents

The art of listening for voices within narrative research is a positive endeavour that has specific value within research design and subsequent approaches to analysis. This paper details an investigation into the dialogic nature of voices among gifted young adolescents who engaged in the co-construction of email-generated self-narratives. Data are drawn from a study involving ten adolescents, aged between ten and fourteen years, diagnosed as gifted according to Australian guidelines. Individual participants were asked to produce self-managed journal entries written and sent as asynchronous emails to the researcher who was the sole recipient and respondent. Within this approach, specific techniques of listening were used to examine a series of multi-vocal narratives generated over a period of six months. This paper proposes that an adaptation of the everyday convenience of email with the traditional journal format as a self-report mechanism creates a synergy that fosters self-disclosure. Individual excerpts are presented to show that the harnessing of personal narratives within an email context has potential to yield valuable insights into the emotions, personal realities and experiences of gifted young adolescents. Furthermore, the co-construction of self-expressive and explanatory narratives supported by a facilitative adult listener appeared to promote healthy self-awareness amongst participants. This paper contributes to narrative exploration in two distinct ways: first, in using online methods for gaining access to the everyday, emotional realities of participants; and, second, in demonstrating the value of listening as a narrative technique for uncovering layers of voices across a body of texts produced over time. These methods represent an innovative attempt to move beyond face-to-face approaches and away from a focus on content and coding techniques that might oversimplify complex emotions.

Narratives of complexity : an ethnographic exploration of resilience and wellbeing among single refugee women in Brisbane

This study aimed to explore resilience and wellbeing among a group of eight refugee women originating from several countries (mainly African) and living in Brisbane, most of whom were single mothers. To challenge mostly quantitative and gender-blind explorations of mental health concepts among refugee groups, the project sought an emic and contextual understanding of resilience and wellbeing. Established perspectives, while useful, tend to overlook the complexities of refugee mental health experiences and can neglect the dense nature of individual stories. The purpose of my study was to contest relatively simplistic narratives of mental health constructs that tend to dominate migrant and refugee studies and influence practice paradigms in the human services field. In this ethnographic exploration of mental health constructs conducted in 2008 and 2009, the use of in-depth interviews, participant observations, and visual ethnographic elements provided an opportunity for refugee women to tell their own stories. The participants’ unique narratives of pre- and post-migration experiences, shaped by specific gender, age, social, cultural and political aspects prevailing in their lives, yielded ‘thick’ ethnographic description (Geertz, 1973) of their social worlds. The findings explored in this study, namely language issues, the impact of community dynamics, and the single status of refugee women, clearly demonstrate that mental health constructs are fluid, multifaceted and complex in reality. In fact, language, community dynamics, and being a single mother, represented both opportunities and barriers in the lives of participants. In some contexts, these factors were conducive to resilience and wellbeing, while in other circumstances, these three elements acted as a hindrance to positive mental health outcomes. There are multiple dimensions to the findings, signifying that the social worlds of refugee women cannot be simplified using set definitions and neat notions of resilience and wellbeing. Instead, the intricacies and complexities embedded in the mundane of the everyday highlight novel conceptualisations of resilience and wellbeing. Based on the particular circumstances of single refugee mothers, whose experiences differ from that of married women, this thesis presents novel articulations of mental health constructs, as an alternative view to existing trends in the literature on refugee issues. Rich and multi-dimensional meanings associated with the socio-cultural determinants of mental health emerged in the process. This thesis’ findings highlight a significant gap in diasporic studies as well as simplistic assumptions about refugee women’s resettlement experiences. Single refugee women’s distinct issues are so complex and dense, that a contextual approach is critical to yield accurate depictions of their circumstances. It is therefore essential to understand refugee lived experiences within broader socio-political contexts to truly appreciate the depth of these narratives. In this manner, critical aspects salient to refugee journeys can inform different understandings of resilience, wellbeing and mental health, and shape contemporary policy and human service practice paradigms.

They Say You are a Danger But You Are Not: Representations and Construction of the Moral Self in Narratives of 'Dangerous Individuals'

This article is based on an analysis of narratives of 26 offenders with mental health problems living in the United Kingdom. It explores the impact of an ascribed dangerous status and the construction of the self as moral and responsible in response to this label with reference to the literature on denial, deviance disavowal and other “techniques of neutralization” and Goffman's presentation of self. Two dominant strands are identified in relation to the construction of moral self-hood: “Not my fault” and “Good at heart” narratives. “Techniques of neutralization” are widely drawn on, particularly denial of responsibility in the “Not my fault” narratives that seek to explain anti-social behavior with reference to external forces such as a hostile environment inhibiting their ability to control their lives. In contrast, “Good at heart” narratives draw on the essentially good and moral nature of the inner-self. Both are used as evidence of sharing and adhering to moral norms in order to present an acceptable and credible self.

Everyday resilience : narratives of single refugee women with children

This article offers a critical exploration of the concept of resilience, which is largely conceptualized in the literature as an extraordinary atypical personal ability to revert or ‘bounce back’ to a point of equilibrium despite significant adversity. While resilience has been explored in a range of contexts, there is little recognition of resilience as a social process arising from mundane practices of everyday life and situated in person -environment interactions. Based on an ethnographic study among single refugee women with children in Brisbane, Australia, the women’s stories on navigating everyday tensions and opportunities revealed how resilience was a process operating inter-subjectively in the social spaces connecting them to their environment. Far beyond the simplistic binaries of resilience versus non-resilient, we concern ourselves here with the everyday processual, person environment nature of the concept. We argue that more attention should be paid to day-to-day pathways through which resilience outcomes are achieved, and that this has important implications for refugee mental health practice frameworks.

Unpacking the micro-macro nexus: narratives of suffering and hope among refugees from Burma recently settled in Australia

Narratives of forced migration are open to a variety of interpretations. In mental health, refugee narratives of arduous journeys in the face of systemic macro socio-political forces are often transformed from this context into a medicalized micro context of inner individual worlds. Both the dominant pathogenic lens of trauma studies and the growing salutogenic lens embodied in resilience research, often reflect a western cultural idiom of focusing on the individualized nature of these phenomena. Using qualitative data collected from refugees from Burma now settling in Australia, the article emphasizes the need for a more reflexive and expansive account of both suffering and hope within refugee narratives. It recounts these narratives within a conceptual framework which acknowledges the importance of the connections between the micro individual experience and the macro, socio-political context. This is not only a question of political principle, but also a matter of listening to the voice of those who know most about the relationship between macro forces of human rights violations and their impact on individual, family and community trajectories.

Narratives of the 'everyday' in Rio de Janeiro's favelas : community photographers' attempts at generating alternative news values [Narrativas do cotidiano nas favelas do Rio de Janeiro: tentativas de construção de valores-notícia alternativos pelos fotógrafos populares]

Abstract This paper presents the partial results of an ongoing research project which investigates ethnographically community (photo)journalism media initiatives, in Rio de Janeiro, Brazil. The Viva Rio and Observatorio de Favelas (NGOs) run projects that provide favela residents with skills to take, edit and print their own (photo) journalism contents that enables community-based framing and documentation of favela live, personalities and issues. Three months of fieldwork related to these projects in Rio's favelas generated remarkable theoretical issues that represent the community photographers' attempt to establish counter news values by shifting the focus from poverty, shortages, violence and criminality to images of the ordinary life which included the myriad events that occurs in the day of the favelas. Resumo Este artigo apresenta os resultados parciais de uma pesquisa em andamento que, a partir do método etnográfico, investiga os projetos de comunicação comunitária, jornalismo e fotojornalismo, no Rio de Janeiro, Brasil. As organizações não-governamentais (ONGs) Viva Rio e Observatório de Favela apoiam projetos que objetivam tornar moradores de favelas capazes de produzir, editar e publicar as suas próprias narrativas sobre personagens e questões do cotidiano de suas comunidades. O trabalho de campo sobre estes projetos, realizado durante três meses nas favelas do Rio de Janeiro, forneceu questões teóricas relevantes que representam o esforço dos fotógrafos populares para estabelecer contra valores-notícia transferindo o foco da pobreza, escassez, violência e criminalidade para imagens do cotidiano que inclui uma miríade de eventos que acontecem no dia-a-dia das favelas.

Narratives of the 'everyday' in Rio de Janeiro's favelas : the construction of alternative news values by community photographers [Narrativas do cotidiano nas favelas cariocas: a problematizacao dos valores-noticia pelos fotografos populares]

Resumo: Esse artigo apresenta os resultados parciais de uma pesquisa em andamento que, a partir do método etnográfico, investiga os projetos de comunicação comunitária, jornalismo e fotojornalismo desenvolvidos por duas organizações não-governamentais na cidade do Rio de Janeiro. O trabalho de campo, realizado durante três meses nas favelas cariocas, forneceu questões teóricas relevantes para os estudos do jornalismo, destacando-se as problematizações sobre a noção de valores-notícia. Voltados para a produção de narrativas centradas no cotidiano das comunidades, os fotojornalistas populares consideram fundamental discutir os valores-notícia formulados pela grande imprensa e propor “contra-valores”.

Making sense of mental illness as a full human experience : Perspective of illness and recovery held by people with a mental illness living in the community.

Recovery is a highly contextualized concept amid divergent interpretations and unique experiences. There is substantial current interest in building evidence about recovery from mental illness in order to inform best practice founded in the ways people find to live productive and meaningful lives. This paper presents some accounts related to recovery and illness expressed by eight people through a Participatory Action Research project. The research facilitated entry to the subjective experiences of living in the community as an artist with a mental illness. The people in the research shared an integrated understanding of illness, recovery and identity. Their understanding provided insight into mental illness as an inseparable aspect of who they were. Further, specific issue was raised of recovery as a clinical term with a requirement to meet distinct conventions of recovery. This paper emphasizes that being ill and being well, for the person with a mental illness, is a dynamic and complex development not easily explained or transformed into uniform process or outcomes. Attempts to establish an integral or consensual approach to recovery has, to date, disregarded mental illness as a full human experience. This paper argues that broader frameworks for thinking and responding to the dynamic processes of mental illness and recovery are needed and require acknowledgment of competing and contradictory ideas.

Narratives of healing: a case study of a young Liberian refugee settled in Australia

The Tree of Life group program is a narrative-based expressive arts intervention, designed to target the psychological difficulties faced by young people from refugee backgrounds. This study utilised a case study methodology to investigate the experience of a single adolescent from a Liberian background resettled in Australia, who participated in a manualised version of the Tree of Life program. The case study aimed to identify the underlying therapeutic processes that enabled the participant to adopt a preferred self-narrative. The participant was observed to demonstrate positive gains as a result of program participation. Five therapeutic factors were identified as particularly salient to the program’s success: the exploration of alternative stories of self; the fostering of group cohesion; the provision of corrective emotional experiences; the experience of outsider witnesses; and the instillation of hope. These factors were discussed in relation to working with young people from refugee backgrounds. Recommendations for future implementation of the Tree of Life program are provided.