Experiences of living kidney donors: A synthesis of unsolicited patient narratives.

INTRODUCTION: Despite the lauded benefits of living kidney donation, there is growing evidence of the challenges that living kidney donors (LKD) encounter in their donation trajectory and gaps in healthcare service provision. However, most of the evidence is derived from research conducted by clinicians or academic investigators. Significantly less attention has been devoted to analyzing unsolicited accounts of LKDs' experiences. METHODS: We conducted a review and synthesis of published unsolicited first-person narratives of LKDs and aimed to synthesize their experiences and identify care needs. Four electronic databases were searched and 27 LKD narratives were included in our final analysis. Thematic synthesis was used to generate themes inductively. RESULTS: Although the majority of LKDs reported the act of donation to be a fulfilling experience, almost 48% reported encountering challenges in the care that they received. Also, 29% of LKDs reported experiencing an adverse clinical event. Five distinct themes emerged surrounding the donation experience and healthcare needs: 1) Educational needs due to perceived lack of transparency and compensating for knowledge gaps; 2) Respect for donor autonomy due to coercive influences from family or healthcare providers, lack of respect for donor preferences and loopholes in the consent process; 3) Unmet care needs related to poor communication with healthcare providers, coordination issues and inconsistent and inadequate long-term care; 4) Unanticipated outcomes due to economic costs and the emotional burden of donation; and 5) Contributing beyond the donation event by advocating for a balanced view of donation and generating support mechanisms. CONCLUSION: In this synthesis of LKDs narratives, important care gaps and the need to advocate for a balanced perspective on living kidney donation were highlighted. Our review underscores the value of patients' own stories as critical evidence that can inform improvement in healthcare service delivery.

Portals to the past and bridges to the future: exploring the impact of doulas on the birthing experiences of black and Latinx women.

INTRODUCTION: In the USA, maternal morbidity and mortality is markedly higher for women of colour than for white women. The presence of a doula has been associated with positive birthing outcomes for white individuals, but the experiences of women of colour remain underexplored. The purpose of this qualitative paper is to understand the attitudes of black and Latinx communities towards doula-supported birthing practices. METHODS: The perspectives of people of colour, both birthing women and doulas, were investigated through popular media sources, including blogs, magazine articles, podcasts and video interviews. Of 108 popular media sources identified in the initial search, 27 included direct accounts from birthing women or doulas and were therefore included in this paper. Thematic analysis was conducted by the grounded theory method. RESULTS: Emerging themes reveal that doula presence allows for the experience of ancestral power, connection to the granny midwives, cultural translation in medical settings and physical protection of the birthing woman. When labouring with the support of a doula, women report the emotional and physical presence of their ancestors. Similarly, doulas recognise an ancestral presence within the birthing woman, and doulas experience their occupation as carrying on ancestral tradition and feel a strong vocational tie to the granny midwives of the American South. Lastly, doulas mediate communication between birthing women, their families and medical providers by emphasising the need for consent and patient autonomy. CONCLUSION: By connecting women of colour to historic and ancient spaces as well as providing comfort and familiarity in the birthing space, doulas grant their clients the self-advocacy and empowerment needed to survive the present. Doulas serve as protectors of women of colour and have become an important piece to bridging society from the current maternal health crisis to a more equitable future.

Improving motivation and treatment uptake behaviors of patients with eating disorders using patient narrative videos: study protocol of a pilot randomized controlled trial.

BACKGROUND: Patients with eating disorders (ED) typically report delays between the onset of symptoms and engagement with treatment services. Personal barriers including stigma, shame, and guilt, as well as the availability of social support may influence patients' decisions to engage with treatment services. Patient narratives are personalized stories discussing the illness and recovery of previously affected persons. Such narratives can reduce self-stigma and provide current patients with hope for their own recovery. METHOD: This pilot study will examine the effects of patient narrative videos on the treatment motivation and uptake of treatment services for patients with ED. Three narrative videos were developed from the perspectives of (a) a former patient with an ED, (b) an ED specialist, and (c) the same former patient discussing a somatic condition unrelated to ED. Patients will be randomized into three video viewing and one treatment-as-usual group. Effects on treatment motivation will be assessed using the University of Rhode Island Change Assessment Scale (URICA-S) immediately after viewing the videos, as well as one-week and three-month follow-ups. Treatment uptake will be assessed during follow-up using a questionnaire listing possible treatment interactions. A post-intervention questionnaire and semi-structured interviews will be used to assess the feasibility and acceptability of patient narrative videos for this population. DISCUSSION: There is an urgent need to encourage patients with ED to engage with specialized treatments as soon as possible. Patient narratives may be a pivotal approach to implementing cost effective and easy to disseminate early intervention programs to future patients with ED.

Adolescent idiopathic scoliosis: interdisciplinary creative art practice and nature connections.

Scoliosis is an abnormal lateral curvature of the spine with the large majority of cases classed as idiopathic, meaning there is no known cause. Typically, most cases occur in children and young people affecting approximately three per cent of the adult populace with five out of six cases being female. The BackBone: Interdisciplinary Creative Practices and Body Positive Resilience pilot research study used arts and humanities methods to measure the impact of adolescent idiopathic scoliosis (AIS) on well-being and body perception. The research aimed to contribute to a better understanding of alternative treatments towards improving quality of life in young women diagnosed with AIS. In particular, concentrating on two highlighted priorities from the Scoliosis Priority Setting Partnership: (1) How is quality of life affected by scoliosis and its treatment? How can we measure this in ways that are meaningful to patients? (2) How are the psychological impacts (including on body image) of diagnosis and treatment best managed.Using established medical techniques, art-based workshops, and focus groups with postoperative participants with AIS and their families we gathered both quantitative and qualitative data. The workshops explored the aesthetics of imperfection through material investigations that focus on the body as both an object and how it is experienced using the metaphor of tree images. Drawing parallels between the growth patterns of trees that, for complex and often unknown reasons, have grown unexpectedly we explored questions around ideological notions of perfect growth through art-making in a non-clinical setting. Uniquely, the pilot project sought to draw on insights from four key disciplines (art, medicine, psychology and human geography), thinking across boundaries to evoke different ways of knowing and understanding the complexities of body perception through image-making.

Assessing an innovative method to promote learning from patient narratives: Findings from a field experiment in ambulatory care.

OBJECTIVE: To assess whether an online interactive report designed to facilitate interpretation of patients' narrative feedback produces change in ambulatory staff learning, behavior at the individual staff and practice level, and patient experience survey scores. DATA SOURCES AND SETTING: We studied 22 ambulatory practice sites within an academic medical center using three primary data sources: 333 staff surveys; 20 in-depth interviews with practice leaders and staff; and 9551 modified CG-CAHPS patient experience surveys augmented by open-ended narrative elicitation questions. STUDY DESIGN: We conducted a cluster quasi-experimental study, comparing 12 intervention and 10 control sites. At control sites, narratives were delivered free-form to site administrators via email; at intervention sites, narratives were delivered online with interactive tools for interpretation, accompanied by user training. We assessed control-versus-intervention site differences in learning, behavior, and patient experience scores. DATA COLLECTION: Staff surveys and interviews were completed at intervention and control sites, 9 months after intervention launch. Patient surveys were collected beginning 4 months pre-launch through 9 months post-launch. We used control-versus-intervention and difference-in-difference analyses for survey data and thematic analysis for interview data. PRINCIPAL FINDINGS: Interviews suggested that the interface facilitated narrative interpretation and use for improvement. Staff survey analyses indicated enhanced learning from narratives at intervention sites (29% over control sites' mean of 3.19 out of 5 across eight domains, p < 0.001) and greater behavior change at staff and practice levels (31% and 21% over control sites' means of 3.35 and 3.39, p < 0.001, respectively). Patient experience scores for interactions with office staff and wait time information increased significantly at intervention sites, compared to control sites (3.7% and 8.2%, respectively); however, provider listening scores declined 3.3%. CONCLUSIONS: Patient narratives presented through structured feedback reporting methods can catalyze positive changes in staff learning, promote behavior change, and increase patient experience scores in domains of non-clinical interaction.

What Patient-Experience Data Reveal about Trust.

This essay analyzes two types of patient-experience data to broaden and deepen understanding of trust in health care. Analysis of patients' open-ended comments shows a close connection between patients' feelings of trust and their intent to recommend providers and provider organizations-a global measure to evaluate patients' perceptions of care experiences. Patients' comments also reveal the bidirectional building of trust between the patient and the caregiver. Trust gets built when patients perceive their caregivers to trust their knowledge of their bodies as well as when caregivers demonstrate caring behaviors that earn the patients' trust. Patients' ratings of a closed-ended survey item on "confidence in provider" create the greatest differentiation for the global measure of patient experience-whether patients did or did not recommend a practice or provider. The essay also discusses related findings on pre-visit friction and the use of humor by the caregiver to expand understanding of trust.

Minding menopause in patients with cognitive impairment: a patient's perspective and reflections on clinical practice.

Many women experience impairment in cognitive function during perimenopause. These symptoms are often not attributed to perimenopause by women themselves, by family and friends, or by healthcare professionals. In this article, we present a case in which perimenopausal complaints were attributed to early dementia and discuss mechanisms contributing to the low level of awareness of perimenopausal symptoms amongst patients and clinicians. Stigma amongst women and healthcare professionals impairs the recognition of perimenopausal complaints, and consideration of treatment options by clinicians. We advocate raising awareness in patients and physicians with more education, and the incorporation of potential menopause-related symptoms in general clinical guidelines.

Using Whiteboard Animation and Patient Narratives for Learning Clinical Ophthalmology: Student Perspectives.

Purpose: In ophthalmology, an area that lacks teaching time in university, whiteboard animation and patient narratives may be untapped resources for learning. This research will seek student perspectives on both formats. The authors hypothesise that these formats would be a useful learning tool for clinical ophthalmology in the medical curriculum. Patients and Methods: The principal aims were to report the prevalence of using whiteboard animation and patient narratives to learn clinical ophthalmology and determine medical students' perspectives on their satisfaction and value as a learning tool. A whiteboard animation and patient narrative video on an ophthalmological condition were provided to students attending two medical schools in South Australia. Following this, they were asked to provide feedback via an online questionnaire. Results: A total of 121 wholly answered surveys were obtained. 70% of students use whiteboard animation for medicine, but only 28% use it for ophthalmology. There was a significant association between the qualities of the whiteboard animation and satisfaction (P<0.001). 25% of students use patient narratives for medicine, but only 10% use it for ophthalmology. Nonetheless, most of the students reported that patient narratives are engaging and improve memory. Conclusion: The consensus is that these learning methods would be welcome in ophthalmology if more content like this were available. According to medical students, whiteboard animation and patient narratives are helpful methods of learning ophthalmology, and a continued effort should be made for their use.

From embodiment to evidence: The harmful intersection of poor regulation of medical implants and obstructed narratives in embodied experiences of failed metal-on-metal hips.

This research presents the results of a study about people with failed metal-on-metal hip implants, and draws on the STS concept of the technological imperative alongside research on the value of patient knowledge in clinical settings and the legitimacy of embodied stories. Popularly understood as positive and life changing, hip replacement surgery was hailed as 'the operation of the century', until a series of widespread failures of hundreds of thousands of hip implants, known collectively as metal-on-metal (MoM) hips, drew attention to the poor regulation of medical implants. This paper argues that poor regulation intersects with narratives of patients' pain, which are obstructed by surgeons and the UK regulatory body, with the effect of denying both patients' embodied experiences of implant failure, and their restitution to good health. Patient narratives about problems with their hip implant are the wellspring from which scientific evidence emerges which can indicate widespread implant failure. By obstructing these narratives the regulatory system undermines the very evidence it needs to operate effectively.

Cancer survival stories: Perception, creation, and potential use case.

BACKGROUND: Cancer patients often search for information about their health conditions online. Cancer patient narratives have established themselves as a way of providing information and education but also as an effective approach to improving coping with the disease. OBJECTIVE: We investigated how people affected by cancer perceive cancer patient narratives and whether such stories can potentially improve coping during their own cancer journeys. Additionally, we reflected on whether our co-creative citizen science approach can contribute to gaining knowledge about cancer survival stories and providing peer support. DESIGN, SETTING AND STAKEHOLDERS: We applied a co-creative citizen science approach by using quantitative and qualitative research methods with stakeholders (i.e., cancer patients, their relatives, friends and health professionals). MAIN OUTCOME MEASURES: Understandability and perceived benefits of cancer survival stories, coping, emotional reactions to the stories and helpful characteristics of the stories. RESULTS: Cancer survival stories were considered intelligible and beneficial, and they potentially support positive emotions and coping in people affected by cancer. Together with the stakeholders, we identified four main characteristics that evoked positive emotions and that were considered especially helpful: (1) positive attitudes towards life, (2) encouraging cancer journeys, (3) individual coping strategies for everyday challenges and (4) openly shared vulnerabilities. CONCLUSIONS: Cancer survival stories potentially support positive emotions and coping in people affected by cancer. A citizen science approach is suitable for identifying relevant characteristics of cancer survival stories and may become a helpful educational peer support resource for people coping with cancer. PATIENT OR PUBLIC CONTRIBUTIONS: We adopted a co-creative citizen science approach, wherein citizens and researchers were equally involved throughout the entire project.

Cripping the pain scale: literary and biomedical narratives of pain assessment.

This article analyses the literary representation of pain scales and assessment in two chronic pain narratives: 'The Pain Scale', a lyric essay by Eula Biss, and essays from Sonya Huber's collection Pain Woman Takes Your Keys, and Other Essays from a Nervous System Establishing first a brief history of methods attempting to quantify pain before my close reading, I read both Biss' and Huber's accounts as performative explorations of the limitations of using linear pain scales for pain which is recursive and enduring. Considering both texts as cripistemologies of chronic pain, my literary analysis attends to their criticism of the pain scale, including its implicit reliance on imagination and memory, and how its unidimensionality and synchronic focus prove inadequate for lasting pain. For Biss, this surfaces as a quiet critique of numbers and a disturbance of their fixity, while Huber's criticism employs the motif of pain's legibility across multiple bodies to spell out alternative meanings of chronic pain.Crucially, this article proposes a crip and embodied approach for reading and responding to accounts of chronic pain's measurement, including Biss' and Huber's literary accounts, and the biomedical account of pains scales which this article reads alongside them. The article's analysis draws on my personal experience of chronic pain, neurodivergence and disability to demonstrate the generativity of an embodied approach to literary analysis. Rather than bowing to the impulse to impose false coherence on my reading of Biss and Huber, my article foregrounds the impact of the re-reading, misreading, cognitive dissonance and breaks necessitated by chronic pain and processing delays on this analysis. In bringing an ostensibly crip methodology to bear on readings of chronic pain, I hope to invigorate discussions on reading, writing and knowing chronic pain in the critical medical humanities.

Narrative-based learning for person-centred healthcare: the Caring Stories learning framework.

This paper describes the learning framework for an innovative narrative-based training platform for healthcare professionals based on older patients' narratives. The aim of Caring Stories is to place patients' desires and needs at the heart of healthcare and by doing so to promote person-centred care (PCC). It is argued that this narrative-based approach to training in healthcare education will provide professionals from different fields with competencies to better understand how to interpret the lifeworlds of older people, as well as facilitate better communication and navigation through increasingly complex care trajectories. The spiral learning framework supports narrative-based training to be accessible to a broad range of healthcare practitioners. We suggest this is a theoretically sophisticated methodology for training diverse healthcare professionals in PCC, alongside core tenets of narrative medicine, with applicability beyond the patient group it was designed for. The learning framework takes into account professionals' mindsets and draws on the epistemic tenets of pragmatism to support interprofessional education. Being informed by narrative pedagogy, narrative inquiry, and expansive learning and transformative learning theories, ensures that a robust pedagogical foundation underpins the learning framework. The paper sets out the conceptual ideas about narrative that we argue should be more widely understood in the broad body of work that draws on patient narratives in healthcare education, alongside the learning theories that best support this framing of narrative. We suggest that this conceptual framework has value with respect to helping to disseminate the ways in which narrative is most usefully conceptualised in healthcare education when we seek to foster routes to bring practitioners closer to the lifeworlds of their patients. This conceptual framework is therefore generic with respect to being a synthesis of the critical orientations to narrative that are important in healthcare education, then adaptable to different contexts with different patient narratives.

A randomized controlled trial of an intervention to reduce stigma toward people with opioid use disorder among primary care clinicians.

BACKGROUND: Many primary care clinicians (PCCs) hold stigma toward people with opioid use disorder (OUD), which may be a barrier to care. Few interventions exist to address PCC stigma toward people with OUD. This study examined whether an online training incorporating patient narratives reduced PCCs' stigma toward people with OUD (primary) and increased intentions to treat people with OUD compared to an attention-control training (secondary). METHODS: PCCs from 15 primary care clinics were invited to complete a 30 min online training for an electronic health record-embedded clinical decision support (CDS) tool that alerts PCCs to screen, diagnose, and treat people with OUD. PCCs were randomized to receive a stigma-reduction version of the training with patient narrative videos or a control training without patient narratives and were blinded to group assignment. Immediately after the training, PCCs completed surveys of stigma towards people with OUD and intentions and willingness to treat OUD. CDS tool use was monitored for 6 months. Analyses included independent samples t-tests, Pearson correlations, and logistic regression. RESULTS: A total of 162 PCCs were randomized; 88 PCCs (58% female; 68% white) completed the training (Stigma = 48; Control = 40) and were included in analyses. There was no significant difference between intervention and control groups for stigma (t = - 0.48, p = .64, Cohen's d = - 0.11), intention to get waivered (t = 1.11, p = .27, d = 0.26), or intention to prescribe buprenorphine if a waiver were no longer required (t = 0.90, p = 0.37, d = 0.21). PCCs who reported greater stigma reported lower intentions both to get waivered (r = - 0.25, p = 0.03) and to prescribe buprenorphine with no waiver (r = - 0.25, p = 0.03). Intervention group and self-reported stigma were not significantly related to CDS tool use. CONCLUSIONS: Stigma toward people with OUD may require more robust intervention than this brief training was able to accomplish. However, stigma was related to lower intentions to treat people with OUD, suggesting stigma acts as a barrier to care. Future work should identify effective interventions to reduce stigma among PCCs. TRIAL REGISTRATION: ClinicalTrials.gov NCT04867382. Registered 30 April 2021-Retrospectively registered, https://clinicaltrials.gov/ct2/show/NCT04867382.

Evaluation of a protocol for eliciting narrative accounts of pediatric inpatient experiences of care.

OBJECTIVE: To evaluate the measurement properties of a set of six items designed to elicit narrative accounts of pediatric inpatient experience. DATA SOURCES: Data came from 163 participants recruited from a probability-based online panel of U.S. adults. Participants were family members of a child who had an overnight hospital stay in the past 12 months. STUDY DESIGN: Cross-sectional survey with follow-up phone interviews. DATA COLLECTION/EXTRACTION METHODS: Participants completed an online (n = 129) or phone (n = 34) survey about their child's hospitalization experience. The survey contained closed-ended items from the Child Hospital Consumer Assessment of Healthcare Providers and Systems (Child HCAHPS) survey, followed by the six narrative items. Approximately 2 weeks after completing the survey, 47 participants additionally completed a one-hour, semi-structured phone interview, the results of which served as a "gold standard" for evaluating the fidelity of narrative responses. Qualitative content analysis was used to code narrative and interview responses for domains of patient experience and actionability. PRINCIPAL FINDINGS: The average narrative was 248 words (SD = 319). Seventy-nine percent of narratives mentioned a topic included in the Child HCAHPS survey; 89% mentioned a topic not covered by that survey; and 75% included at least one detailed description of an actionable event. Overall, there was 66% correspondence between narrative and interview responses. Correspondence was higher on the phone than in the online condition (75% vs. 59%). CONCLUSIONS: Narratives elicited from rigorously designed multi-item sets can provide detailed, substantive information about pediatric inpatient experiences that hospitals could use to improve child and family experiences during pediatric hospitalization. They add context to closed-ended survey item responses and provide information about experiences of care important to children and families that are not included in quantitative surveys.

Metaphors and decision making in parental blogs about their children with life-limiting diseases: who's afraid of the war metaphor?

The use of metaphors aids understanding by allowing us to think of complex problems in terms of relatively simple and more concrete information. As such, metaphors shape thought and guide future action. While metaphors are known to play a role in medical treatment decision-making, the effect of particular metaphors is unknown.This paper explores the metaphors West-European parents use for their child suffering from a life-limiting condition by analysing 15 blogs from Dutch, German and English and Welsh parents. The analysis found that all parents use war metaphors to describe their child and their disease. Describing their child in war metaphors, for example, 'fighter', 'hero' or 'trooper' allows parents to express their pride in their child. To describe the familial situation parents use both 'life as a fight' and a 'time as space' metaphor. Time is conceptualised as a space to be filled with positive experiences to allow the child to live as full a life as possible. In medical treatment decisions, parents balance 'fighting the disease' against their child's ability to live a good life. No evidence was found that the use of war metaphors increase a tendency to treat when benefit is unlikely. Instead, parents primarily use war metaphors as a conduit to express their love for their child and to empower them to manage the familial situation.

Somewhere out there in a place no one knows: Yoko Ogawa's The Memory Police and the literature of forgetting.

Yoko Ogawa's The Memory Police was published in Japanese in 1994. Since the release of its first English translation in 2019, the text has attracted a handful of responses from English literary scholars. Most of these focus on the novel's allegorical potential in relation to issues of totalitarianism and collectively enforced memory loss-as evocative, for example, of the Orwellian dystopia, or the state silencing of radiation victims in Japan. Ogawa's text depicts inhabitants of an unnamed island as they suffer a series of 'disappearances'. At the same time on arbitrary days, they forget about things like birds, hats, roses, sucking sweets and music boxes, eventually losing the ability to control various parts of their own bodies. In this world, the Memory Police are a militarised collective that remove all traces of 'disappeared objects' and ruthlessly disposes of islanders whose forgetting lapses. While my essay does not aim to displace existing readings of the text, it does suggest that these might be supplemented by a recognition of the aspects of Ogawa's writing that evoke processes of biological individual forgetting-and, more specifically, the neurodegenerative course of dementias such as Alzheimer's disease. An appreciation of the novel's fertility, I argue, might be heightened by reading The Memory Police, for example, as strangely resemblant of neurofibrillary plaques and amyloid tangles or by imagining the island itself as an image of the gradually fading Alzheimer's-infected brain. In the paper that follows, I consider The Memory Police alongside a collection of texts from what might be called a 'literature of forgetting'-Thomas DeBaggio's Losing My Mind, David Shenk's The Forgetting, Nicci Gerrard's What Dementia Teaches Us about Love and others-in an attempt to draw out some of their eerie resonances with Ogawa's island.

Chronicling the chronic: narrating the meaninglessness of chronic pain.

This article proposes a way of narrating chronic pain: the telling of a chronicle Recent work in the medical humanities has been critical of traditional approaches to illness narratives. In line with this criticism, we argue that the experience of chronic pain resists internally coherent, plot-driven-in other words, Aristotelian-narrative. Drawing on phenomenological studies, we state that chronic pain is an utterly meaningless experience due to its relentless continuation over time. It therefore defies any narrative search for a higher meaning or purpose as well as the search for a coherent and progressive 'plot'. However, we reject the idea that chronic pain could therefore only be captured in the form of a meaningless, unshareable and chaotic anti-narrative. Instead, we propose that chronic pain could be borne witness to through the speech act of chronicling-an ongoing telling about ongoing suffering. Building on work of contemporary philosophers Philippe Lacoue-Labarthe and Jean-Luc Nancy, we examine what the chronicle entails by touching on three themes: time, meaning, and the body. First, we argue that chronicling allows people to bear witness to chronic pain's purposeless continuation over time, thereby affirming the utter meaninglessness of the experience. Second, we argue that it is precisely in the affirmation of this meaninglessness that a different kind of meaning can be experienced: a meaning which cannot be detached from the sensory experience of telling and listening itself. Third, we examine how chronicling chronic pain could allow the muted and painful body to once again meaningfully express itself to others.

Traumatic disclosures in the life stories of older Vietnam era veterans.

BACKGROUND: Eliciting life stories is an important component of person-centered care that may aid in understanding how an individual's unique background and narrative impacts their health. Such life stories, especially when gathered from older military Veterans, may include traumatic events, raising the urgency that clinicians be prepared to provide care that is trauma-informed and ensure Veteran's experiences are acknowledged and treated effectively. METHODS: We examined the prevalence and type of potentially traumatic and/or adverse life events spontaneously shared by 231 older Veterans participating in a life story intervention while receiving care within the U.S. Veterans Health Administration system. Veteran life stories were extracted from the electronic medical record and deductive qualitative content analysis was used to code potentially traumatic or adverse life experiences based on a codebook adapted from the Brief Trauma Questionnaire and Adverse Childhood Experience questionnaire. RESULTS: A majority (71.0%) of Veterans described at least one traumatic disclosure in their life story. Among narratives with a disclosure of any type, more than half (53.0%) included descriptions of combat trauma, 21.5% noted a history of life-threatening illness, and 9.5% reported having been in a serious accident. Fewer noted adverse childhood experiences (19.5%). CONCLUSIONS: Elicitation of life stories among older Veterans may advance person-centered care and life stories frequently include disclosure of potentially traumatic and/or adverse life events. These findings underscore the normative experience of traumatic events among older Veterans and highlight the importance of developing age-sensitive trauma-informed care competencies.

COVID-19 narratives and layered temporality.

The essay outlines the ways in which narrative approaches to COVID-19 can draw on imaginative literature and critical oral history to resist the 'closure' often offered by cultural representations of epidemics. To support this goal, it analyses science and speculative fiction by Alejandro Morales and Tananarive Due in terms of how these works create alternative temporalities, which undermine colonial and racist medical discourse. The essay then examines a new archive of emerging autobiographical illness narratives, namely online Facebook posts and oral history samples by 'long COVID' survivors, for their alternate temporalities of illness.

Writing the worlds of genomic medicine: experiences of using participatory-writing to understand life with rare conditions.

The diagnostic and treatment possibilities made possible by the development and subsequent mainstreaming of clinical genomics services have the potential to profoundly change the experiences of families affected by rare genetic conditions. Understanding the potentials of genomic medicine requires that we consider the perspectives of those who engage with such services; there are substantial social implications involved. There are increasing calls to think more creatively, and draw on more participatory approaches, in evoking rich accounts of lived experience. In this article, we discuss our rationale for, and experiences of, using 'participatory-writing' to understand the diverse, variable and multilayered everyday lives of families and how these correspond with the emerging, rapidly changing and complex field of genomic medicine. Participatory-writing has many benefits as a method for social inquiry. Writing can be expressive and self-revelatory, providing insight into personal and sensitive topics. Writing together produces new conversations and relationships. Pieces written by participants have the potential to affect readers, evoking and enlivening research and prompting professional change. Working with a writing tutor, we organised a participatory-writing programme for families touched by genetic conditions. This involved a series of workshops with an emphasis on building confidence in expressing lived experience through experimenting with different writing techniques. Afterwards we arranged reflective interviews with participants. We drew on dialogical narrative analysis to engage with participants' written pieces, and highlight what everyday life is like for the people who live with, and care for, those with genetic conditions. The stories produced through our writing-groups unfold the implications of new genomic technologies, illuminating how genomics acts to (and likewise, fails to) reconfigure aspects of people's lives outside of the clinic, while simultaneously existing as a sociotechnical frame that can eclipse the wider contexts, challenges and liveliness of life with rare genetic conditions.