Narratives Of Survivors Research Articles

Female breast cancer survivor narratives on paths to healing after the conclusion of primary treatment: A qualitative study.

Female breast cancer survivors (BCS) experience different paths to healing after the conclusion of primary treatment. This study sought to describe the experiences of female BCS in the months and years after primary treatment by determining how and when healing happens, as well as what healing means to BCS. A qualitative approach was used through thematic analysis of data collected through questionnaires and semi-structured interviews from 17 female BCS. Data analysis identified four major themes: (i) the process of finishing treatment and continuity of care, (ii) support systems for BCS, (iii) self-efficacy and personal accountability, and (iv) the social transition after cancer. Factors that affect the healing of BCS can be conceptualized as external or personal. Participants found that barriers to healing created by external factors were addressed by improved coordination of care and high-involvement transition programs as opposed to conversational support groups. Barriers created by personal factors were mitigated through organically formed support systems and promotion of self-efficacy and resilience. Participants expressed a desire for a shift in mainstream discourse to better reflect their experiences. Each BCS conceptualized survivorship differently, with some seeing a clear end to healing, and others who viewed it as a lifelong process. Understanding the many paths to healing taken by BCS after concluding primary treatment, as well as common barriers to and catalysts for healing, can aid providers in addressing patient needs based on their individual experiences.

Embodiment-based self-management for Israeli breast cancer survivors after mind-body therapy

Objective As advances in breast cancer treatment have bolstered survival rates, post-treatment self-management has become crucial for survivors’ well-being. Methods In the current qualitative research, conducted via content and form analysis of 12 in-depth interviews, the authors explored self-management strategies in the narratives of female breast cancer survivors who underwent mind-body therapy. Results Three coping models emerged: (1) an illness-focused story overshadowing the body, (2) a coexistence of illness and body stories, and (3) an embodied illness-story. These self-management models showcase a developmental sequence, reflecting the evolution of coping mechanisms. Conclusion The study underscores embodiment’s significance in fostering agency and well-being, particularly in a societal and medical context where body attention tends to be marginalized.

“Somewhere along the line, your mask isn’t going to be fitting right”: institutional racism in Black narratives of traumatic brain injury rehabilitation across the practice continuum

BackgroundOver two decades of research about traumatic brain injury (TBI) rehabilitation emphasized the persistence of racial health disparities in functional outcomes that disproportionately impact Black populations without naming or addressing racism as the root problem. Further, the experiences of Black people with TBI have yet to be documented and accounted for in scientific scholarship from the perspectives of Black persons in Canada.PurposeThis study intended to examine the rehabilitation narratives of Black TBI survivors, family caregivers, and rehabilitation providers and use critical race theory as a conceptual framework to understand how anti-Black racism manifests in those experiences.MethodsThrough critical narrative inquiry informed by a critical constructivist paradigm and a critical race theory lens, in-depth narrative interviewing were conducted with seven survivors, three family caregivers, and four rehabilitation providers. Data were analyzed using reflexive thematic analysis within and across groups of participants to conceptualize themes and sub-themes.FindingsThemes captured how racism becomes institutionalized in TBI rehabilitation: (1) the institutional construction of deficient Black bodies, (2) the institutional construction of rehabilitation access, (3) the institutional investment in resisting and approximating whiteness in rehabilitation practice, and (4) the institutional construction of deficient Black futures.ConclusionStudy findings point to the dire need to ensure rehabilitation programs, services, and the delivery of care are not determined based on inequitable practices, racial biases and assumptions about Black people, which determine who deserves to get into rehabilitation and have opportunities to be supported in working towards living a full and meaningful life.

Politics and Violence in Representation of Acid Attack Victims in the Media: A Feminist Discursive Perspective

Abstract In recent times, narratives of acid attack survivors have become common in the media (newspapers and magazines), showcasing them simultaneously as fashion models and victims of a heinous crime. In a similar vein, the Hindi film Chhapaak underscores the barbarity of an acid attack and the subsequent struggles for justice by the protagonist. Drawing on feminist critical discourse analysis and insights from Nancy Fraser on cannibal capitalism, this article analyzes the discursive construction of acid assault victims through select extracts from media articles and the film to highlight the politics of representation of the survivors and their ordeals against patriarchal and androcentric arrangements in society. Linguistic analysis (through speech acts, vocabulary, and presupposition) reveals contradictory discourses of celebration and discrimination in the media in relation to fashion, where the acid survivors are used not only to increase awareness about the offense but also to promote sales of garments. The discourses of rampant unemployment, gender-based oppression, and racial violence, despite laws regulating the sale of acid, underscore the cannibalizing tendencies of a capitalist society that seeks to devour and shun women after incapacitating them. Furthermore, the complicity of public agencies (legal, medical, and governmental) hints at apathy, callousness, and the systemic violence symptomatic of a profit-driven capitalist society.

Refusing Child-Stealing States: Settler Capitalism and the Ends of Canada's Indigenous Child Removal System

Abstract: This article examines the relationship between Canadian sovereignty and the removal of Indigenous children into non-native foster and adoptive homes. In it, I analyze how colonial child protection regimes following Residential Schools—from the Sixties Scoop (1951–1991) to the present Millennium Scoop—continue Canada's war against Indigenous lives and nations. From Sixties Scoop survivor narratives, ethnographic and archival data, and Indigenous and Black feminist theory, I highlight the gendered character of colonial sovereignty and capitalism. This paper argues that daily practices of refusal and care as an elaboration of Indigenous political orders unmake the grounds of colonial polity.

QOL-17. LIFE AFTER PAEDIATRIC LOW-GRADE GLIOMA: THE SURVIVOR NARRATIVE. QUALITATIVE INTERVIEWS OF ADULT PLGG SURVIVORS

Abstract BACKGROUND Most patients with PLGG will survive, but long-lasting functional & Quality of Life (QOL) impairments can occur. No PLGG survivorship research has yet included individual survivor narratives. The true impact of the tumour & its treatment on lived experiences from the survivor perspective remains to be explored. AIMS To evaluate PLGG survivor narratives across a heterogeneous group of adult survivors atleast 5 years from PLGG treatment. METHODS An interview guide was created comprising topics around survivors’ past and present experiences and hopes for the future. Open-ended semi-structured interviews were completed with adult survivors diagnosed with PLGG at Great Ormond Street Hospital, UK, 1980-2005. Video interviews were completed on zoom with the same interviewer, and recordings dictated verbatim to transcripts for Framework Analysis(FA). The codebook for analysis was created according to prior literature & themes emerging within and across the transcripts. RESULTS 10 of 26 (38%) eligible survivors (median age 21.5yrs) completed interviews 28-73 minutes long. Median duration 12 years from diagnosis (9-18yrs). FA comprised 18 codes categorised into 4 major themes: The Self, The Social World, Experiences Of A PLGG, & Survivorship. Interviews allowed novel identification that seizures universally contributed long-lasting trauma and mental health disturbance. They also demonstrated that personality, adaptation to a new normal, and both the social & practical support received significantly influenced the impact of objective functional deficits on perceived QOL.All 10 survivors directly reported considering themselves to continue to be functionally affected by their PLGG as an adult. CONCLUSIONS We provide novel first-hand accounts of adult PLGG survivors, representing an important first-attempt at incorporating the survivor narrative and lived experiences as a core component of the evaluation of PLGG survivor outcomes. The narrative accounts allowed us to gain a more in-depth understanding of life for PLGG survivors; and allowed identification of new themes and topics not identified by PedsQl or similar quantitative QOL instruments.

Colonizing Salvation

This article argues that if the Canadian state forced “civilization” on Indigenous Peoples, Churches involved in the colonial policy of the state offered “salvation” through various strategies. Through the use of an important cultural artefact and narratives of residential school survivors, this article explores some of these strategies. The result of this exploration reveals the deep entanglements between modernity and Christianity, and the nature of Christian theological claims.

Nostalgia in Life Writing: Tracing the Uses of Nostalgia in Select Holocaust Trauma Memoirs

The article seeks to develop a theoretical analysis and interpretation of the role of nostalgia in German Holocaust memoirs. The intervention of advertising by appropriating nostalgia into marketing has led to an effacement of ‘algia’ or the pain that nostalgia implicates. The modern perception of nostalgia as a positive emotion has affected the idea of yoking nostalgia to traumatic experiences. The current paper analyses whether nostalgia plays a conspicuous role in the trauma narratives of Holocaust survivors. The paper is divided into three sections: first, an overview of the term ‘nostalgia’ through the ages is attempted to comprehend the problem of attaching nostalgia to trauma narratives. Second, textual analysis of The Boy on the Wooden Box (2013) by Leon Leyson and I will Plant you a Lilac Tree (2005) by Laura Hillman is undertaken to establish the presence of nostalgia in the narratives. Third, the major uses of nostalgia in the select texts are condensed into five categories: nostalgia functions as a tool of Ideological State Apparatus (ISA), relieves survival anxiety, improves resolute decisions, aids in preserving nostalgic objects and operates as an intermediary between individual and collective memories in the primary texts. Svetlana Boym’s binary classification of nostalgia is applied to the texts to provide an insight into the nature of nostalgia invoked. The study concludes that restorative nostalgia disrupts progress but augments the nostalgic individual’s determination to survive and recreate the perfect past. Reflective nostalgia provides the awareness that the past is irrevocable, and that change is inevitable.

Dangerous Memory in Nagasaki: Prayers, Protests and Catholic Survivor Narratives, written by Gwyn McClelland

Dangerous Memory in Nagasaki: Prayers, Protests and Catholic Survivor Narratives, written by Gwyn McClelland

Survival and Strength Amidst Turmoil: The Resilient Journey of a Partition Refugee

This paper explores the experiences of Parhalad Bhagat, a survivor of the 1947 Partition of India, an event which led to one of the largest forced migrations in history. Through oral testimony, this research captures Bhagat’s journey from his ancestral home in Balhar, Rawalpindi, to resettling in Haridwar, India. Bhagat’s narrative recounts harrowing events, including the traumatic separation from his family, the challenges of life in refugee camps, and the emotional toll of displacement. His story reflects the immense trauma experienced by millions during Partition, a period marked by violence, loss, and forced migration across newly drawn borders. This study underscores the importance of oral histories in preserving personal and collective memories, which are often absent from official records. By documenting individual experiences, this paper contributes to a nuanced understanding of the long-term psychological and social effects of Partition on survivors. Bhagat’s resilience in the face of profound adversity offers valuable insights into the human cost of Partition, making this research an essential addition to the study of Partition’s legacy. The study contextualizes Bhagat’s experiences within existing literature, aligning with works by Aanchal Malhotra and Anam Zakaria, whose research also highlights the personal impact of Partition through survivor narratives.

Development, acceptability and usability of culturally appropriate survivor narrative videos for breast cancer treatment in Botswana: a pilot study

ObjectivesNarrative communication has demonstrated effectiveness in promoting positive health behaviours, delivering support and coping with complex decision-making. Formal research evaluating this intervention for cancer treatment in Africa is lacking. We...

Stories to Prevent Cancer: A Pilot Study Using Cancer Survivor Narratives to Increase Human Papillomavirus Vaccine Intentions.

Human papillomavirus (HPV) vaccination rates are lower than other recommended adolescent vaccines. Cancer survivor narratives are used to promote cancer prevention and control, but little is known about their impact on adolescent HPV vaccination. This pilot study explored the feasibility and effects of a video education intervention using a cancer survivor narrative to improve parents' attitudes toward and intentions to get the HPV vaccine. This study utilized a one-group design; participants completed a pre-intervention survey, watched the video before attending their sons' wellness visits, and completed a post-intervention survey within one week of their appointment. Using the narrative persuasion framework, we developed a 4-minute video of a local HPV-related cancer survivor to promote the HPV vaccine as cancer prevention. We recruited 37 participants between June and October 2020. Participants were parents of males ages 9-17 who had not yet initiated HPV vaccination. After the video, more parents agreed that HPV vaccination is safe (pre: 66% vs. post: 82%; P = .045) and that their child's chances of getting HPV-related cancer in the future are high (pre: 24% vs. post: 46%; P = .014). Overall, 91% of parents felt the cancer survivor story helped them understand the risks of HPV cancers, and 52% said the story influenced their decision to start HPV vaccination for their child. Our findings suggest that cancer survivor narratives influence parents' vaccine opinions and understanding of their child's risk of HPV infection, leading to increased parental intent to get the HPV vaccine for their adolescent males.

It’s More Than a Matter of Trust: What Parents and Young Children Need to Know to Prevent Intrafamilial Child Sexual Abuse

ABSTRACT Programs aimed at preventing child sexual abuse typically focus on skilling up young children and, to a lesser extent, parents by imparting a range of protective messages. Many sexual abuse prevention programs include a focus on identifying or vetting “safe” or “trustworthy” people. The authors qualitatively analyzed the content of narratives from individuals with childhood experience of intrafamilial sexual abuse, an under-represented voice in the development of child sexual abuse prevention programs. The analysis of impediments to protection indicated that, within the family context, reductionistic judgments of familiar individuals’ perceived safety or trustworthiness impaired child safety. In addition to adults and children being unable to recognize sexually abusive behavior and warning signs, child-victim survivor narratives highlighted the barriers for prevention in family environments characterized by maltreatment, a lack of child rights or that were unsupported by external authorities. Implications for the content of messages young children and their parents need to prevent child sexual victimization in the context of everyday family life are discussed.

Narratives of childhood sexual abuse: healing through music in Ian McEwan’s On Chesil Beach

Narratives of survivors or by survivors offer useful and compelling insights into the experiences of abuse and its consequent effect on health. Reading such narratives can help a physician or...

Decolonizing Interspecies Relationality

The article examines neoliberal and anthropocentric discourses of disability inclusion in the context of animal rescue. The first part offers a close reading of two US-based documentaries— Guardians of Recoleta (Kuhre) and God’s Little People (Berkley)—both of which perpetuate ableist and anthropocentric assumptions about transnational adoption as a “cure” or solution for animals with illnesses and disabilities. Drawing upon ethnographic participant observation at a cat sanctuary in Syros, Greece, the second part discusses narratives of feline skin cancer survivors that center around animal agency, pleasure, and desire. By caring for cats in a way that accounts for their capacity to experience pleasure as well as pain, volunteers at Syros Cats articulate a decolonial approach to the question of interspecies relationality, one based not on neoliberal models of ownership and property rights, but rather on a recognition of street cats as subjects of multispecies habitats.

Meaning of Generativity in Cancer Survivor Narratives:

Meaning of Generativity in Cancer Survivor Narratives:

Becoming a Survivor? Identity Creation Post-violence

In recent decades, advocates have sought to combat stereotypes about sexual violence and victims. This effort included replacing the term “victim” with the term “survivor,” but researchers have little understanding of how people who have experienced violence understand these terms. Drawing on in-depth interviews of 30 young people marginalized by gender who have experienced sexual violence, I find that few strongly identified with either label. Respondents described victim and survivor in contrast with each other, creating two typologies of response post-violence that exist along a continuum. Respondents described “victim” as an all-encompassing label that communicated overall weakness and passivity. Most distanced themselves from the victim label and aspired to the survivor label. However, most did not identify as survivors. They described being a survivor as the result of a long process toward becoming strong, morally worthy people who had “moved on” and were ready to advocate for others. Respondents’ descriptions of survivors constitutes what I theorize as the “perfect survivor narrative,” a cultural script that made it difficult for most people in the sample to identify as a survivor, with implications for their racialized and gendered self-perceptions. The findings demonstrate the freedoms and constraints of using new language to combat dominant narratives.

Journey for a cure: Illness narratives of obstetric fistula survivors in North Central Nigeria.

Obstetric fistula is a life transforming event resulting in embodied biographical disruption. Survivors suffer myriad long-term physical and emotional consequences. This paper is an account of a narrative inquiry, conducted with 15 fistula survivors in North-central, Nigeria, who described how their identities had been transformed by their condition. A narrative therapeutic approach, using Frank's 'chaos, restitution and quest' typology, was used to map their recovery narratives. 'Chaos', described by Frank as the opposite of restitution, dominated, with women losing hope of recovery. Women's shift towards 'restitution' began with treatment, but inadequate health-care access often delayed this process. In their quest narratives, women's life and identify changes enabled them to derive meaning from their experience of obstetric fistula within the context of their own lives. The findings highlight socio-structural factors raising the risk of obstetric fistula, which in turn causes biographical disruption and hampers sufferers' treatment and recovery. Rehabilitation should include income-generating skills to bring succour to survivors, particularly those whose incontinence persists after repairs.

Dangerous memory in Nagasaki. Prayers, protests and Catholic survivor narratives. By Gwyn McClelland. (Asia's Transformations, 55.) Pp. xxx + 216 incl. 31 figs and 2 maps. London–New York: Routledge, 2020. £120. 978 0 367 21775 4

Dangerous memory in Nagasaki. Prayers, protests and Catholic survivor narratives. By Gwyn McClelland. (Asia's Transformations, 55.) Pp. xxx + 216 incl. 31 figs and 2 maps. London–New York: Routledge, 2020. £120. 978 0 367 21775 4

Financial toxicity among cancer survivors: a conceptual model based on a feedback perspective

PurposeExperiencing financial toxicity following a cancer diagnosis is a circular and complex process. We investigate the circular causal mechanisms that either reinforce or balance financial toxicity dynamics.MethodsWe conducted a literature review, expert interviews, a participatory modeling process, and exploratory interviews with N = 11 adults with cancer living in Switzerland. We sampled participants purposively based on health-related and sociodemographic characteristics.ResultsWe describe a conceptual model based on the triangulation of cancer survivor narratives, expert perspectives, and a literature review. This model distinguishes between the reinforcing and balancing feedback loops that drive the dynamics of financial toxicity. It includes the topics “Coping with cancer and employment,” “Coping with limited economic resources,” and “Maintaining care resources while facing economic pressure.” For each topic, we identify a necessary condition for cancer survivors to avoid reinforcing financial toxicity.ConclusionsThe results allow us to reconstruct participant narratives regarding cancer-related financial toxicity. Based on comparison with scientific literature from Western Europe and North America, we hypothesize the validity of the model beyond the population covered by the sample. The results highlight the importance of screening for the risk of financial toxicity in the clinical context and individual risk and resource assessment in social counseling.Implications for cancer survivorsThese results can raise cancer survivors’ awareness of risks related to financial toxicity and strengthen their resources for coping with financial burden successfully.