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Introduction: Alongside the logic of care, many Western welfare states have introduced market elements or a logic of choice in their healthcare systems, which has led to consumerist behavior in patients. For the medical field, it is well documented how consumerism creates complex ethical dilemmas and undermines ways of thinking and acting crucial to healthcare. Little is known about these dynamics in mental healthcare. Methods: This study used a qualitative mixed methods design, combining 180 online patient narratives (blogs) with 25 interviews with therapists in a grounded theory approach. Results: Findings show that articulate behavior can be divided into two categories: assertive and adamant. While assertive behavior is understood as an integral, reciprocal part of therapy and is stimulated by therapists, adamant or consumerist behavior is experienced as damaging the relationship—the "commodity" the patient is seeking to obtain, as the single most important predictor of treatment success. Findings also show that articulate behavior in both varieties takes a different shape over time during the course of treatment. Discussion: Adamant behavior clashes with the internal logic of care, which is especially problematic in mental healthcare where the relationship with one's therapist is key to successful treatment. Therefore, patients should be taught and helped to display assertive behavior without resorting to adamancy. Individual therapists cannot achieve this alone; this endeavour should be supported by their organizations, societal beliefs about therapy and policy choices. [ABSTRACT FROM AUTHOR]

Background: Patient narratives can best be defined as personal stories of persons previously or currently affected by a physical or mental health disorder. The collaborative development and implementation of such narratives reflects a participatory approach between researchers, patients, and members of the public towards the development of new interventions. Patient narratives can foster feelings of support and belonging, as well as increase hope and motivation towards recovery. Aims of this pilot study were (a) the collaborative development of a series of evidence-based patient narrative videos about eating disorders, (b) their initial evaluation with a group of participants without (current) eating disorders, and (c) to provide a reproducible documentation of this methodological approach. Method: A multi-stage participatory process was used including a) a systematic review, b) focus groups with affected persons, c) the participatory narrative development, and d) an initial pilot study with participants without (current) eating disorders. A former and currently recovered patient was recruited as a lived experience representative, while a psychotherapist provided the same information from a professional perspective. Control group videos featured the lived experience representative discussing a somatic condition unrelated to eating disorders (i.e., torn knee ligament). Two videos were created for each perspective with varying degrees of emotionality of the content. Results: Nineteen female participants without (current) eating disorders were recruited for the pilot study. All videos received positive ratings, however, participants rated videos in which the lived experience representative discussed her eating disorder as significantly more authentic than the control group videos, as well as significantly more empathic, useful, and better overall than the psychotherapist and control group videos. Participants further indicated a clear preference for videos with higher emotionality, regardless of which perspective or disorder was being presented. Discussion: The use of patient narratives for eating disorders is a relatively new methodological approach. This paper provides one example of how evidence-based patient narratives can be constructed. The patient narratives created in this study received positive feedback from participants without (current) eating disorders and are currently being tested in a 4-arm randomised controlled pilot study with patients affected by eating disorders. [ABSTRACT FROM AUTHOR]

Abstract Background Patient narratives can best be defined as personal stories of persons previously or currently affected by a physical or mental health disorder. The collaborative development and implementation of such narratives reflects a participatory approach between researchers, patients, and members of the public towards the development of new interventions. Patient narratives can foster feelings of support and belonging, as well as increase hope and motivation towards recovery. Aims of this pilot study were (a) the collaborative development of a series of evidence-based patient narrative videos about eating disorders, (b) their initial evaluation with a group of participants without (current) eating disorders, and (c) to provide a reproducible documentation of this methodological approach. Method A multi-stage participatory process was used including a) a systematic review, b) focus groups with affected persons, c) the participatory narrative development, and d) an initial pilot study with participants without (current) eating disorders. A former and currently recovered patient was recruited as a lived experience representative, while a psychotherapist provided the same information from a professional perspective. Control group videos featured the lived experience representative discussing a somatic condition unrelated to eating disorders (i.e., torn knee ligament). Two videos were created for each perspective with varying degrees of emotionality of the content. Results Nineteen female participants without (current) eating disorders were recruited for the pilot study. All videos received positive ratings, however, participants rated videos in which the lived experience representative discussed her eating disorder as significantly more authentic than the control group videos, as well as significantly more empathic, useful, and better overall than the psychotherapist and control group videos. Participants further indicated a clear preference for videos with higher emotionality, regardless of which perspective or disorder was being presented. Discussion The use of patient narratives for eating disorders is a relatively new methodological approach. This paper provides one example of how evidence-based patient narratives can be constructed. The patient narratives created in this study received positive feedback from participants without (current) eating disorders and are currently being tested in a 4-arm randomised controlled pilot study with patients affected by eating disorders.

It is since the beginning of the so-called 'digital revolution' in the 1950s that technological tools have been developed to simplify and optimise traditional, time-consuming, and laborious anamnestic collection for many physicians. In recent years, more and more sophisticated 'automated' anamnestic collection systems have been developed, to the extent that they can actually enter daily clinical practice. This article not only provides a historical overview of the evolution of such tools, but also explores the ethical and medico-legal implications of the transition from traditional to digital anamnesis, including the protection of data confidentiality, the preservation of the communicative effectiveness of the doctor–patient dialogue and the safety of care in patients with poor digital and health literacy. [ABSTRACT FROM AUTHOR]

Background and Objectives: Patient experience narratives (narratives) are an increasingly important element of both measurement approaches and improvement efforts in healthcare. Prior studies show that narratives are considered by both clinicians and staff to be an appealing, meaningful, and credible form of evidence on performance. They also suggest that making concrete use of narratives within organizational settings to improve care can be complex and challenging. Our qualitative study was designed to explore how middle managers working in a health system’s outpatient clinics value and use written narratives in their day-to-day work. Methods: We conducted qualitative interviews with 20 middle managers working in 8 outpatient clinics. Interviews were fully transcribed, loaded into MAX-QDA software, and coded using thematic analysis techniques. Code reports were extracted and reanalyzed for subthemes related to the objectives of this paper. Results: Middle managers across sites described valuing narratives as a tool to: enable better patient experience assessment by augmenting data from patient experience scores; deepen understanding of and relationships with patients; provide insight about operational issues; identify areas for needed improvement and potential solutions; and facilitate strategic work. They reported using narratives for a range of activities related to their roles as supervisors, such as focusing attention on positive practices and needed improvements, promoting deeper group learning, motivating change, reinforcing sense of purpose for staff, recognizing staff strengths and training needs, and inspiring transformational thinking. Finally, interviewees reported numerous specific quality improvement projects (both short- and longer-term) that were informed by narratives-for example, by identifying an issue to be addressed or by suggesting a workable solution. Together, these interviews suggest a collective “narrative about narratives” woven by these organizational actors-a story which illustrates how narratives are highly relevant for how middle managers derive meaning from their work, put organizational values such as responsive service provision into practice, and enact their roles as supervisors. Conclusions: Our results add to the nascent literature a detailed description of how narratives can be used both as a tool for middle managers in their leadership and supervisory roles, and as a blueprint for improvement work within outpatient settings. They also illuminate why patient experience scores may improve when narrative data are collected and used. Finally, our results suggest that for middle managers, perhaps “nothing is more powerful than words” because narratives function as both an insight provider and a compelling tool that adds direction and meaning to workplace endeavors. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Language has proven to possess tremendous power: words not only reflect our perception of the world, but they also have an impact on other people's ideas (Foucault, 2002; Fairclough, 2003; Koller, 2017). This is especially significant in the case of health communication, which, in the last few years, has raised a particular interest as a result of the number of health-related discourses that have emerged on the Internet (Harvey, 2013; Brookes and Hunt, 2021). Exchanging information has become so easy and quick now that more and more people are starting to share their stories of illness, raising awareness and seeking for emotional support, which has highlighted the therapeutic role of storytelling (Conti, 2019). Given that cancer is the leading cause of death in the world (WHO, 2022), and considering the growing trend towards storytelling and the extraordinary power of language, the aim of this paper is to analyse how cancer patients use language in their narratives when describing their illness experiences. To conduct our analysis, we compiled a corpus of cancer narratives written in English and used corpus linguistic tools (McEnery and Hardie, 2012) such as Sketch Engine (Kilgarriff et al., 2014) to explore how cancer, illness, health, life and death are represented. Preliminary findings show that, although the word 'cancer' seems to be commonly used by English-speaking cancer patients, they do not often talk about death, especially about their own, suggesting that death may still be a taboo in our society. In addition, as reflected in their narratives, patients seem to change their life expectations, values and priorities after living with cancer. Furthermore, our findings suggest that patients may understand certain issues such as 'being healthy' differently from the general population. [ABSTRACT FROM AUTHOR]

IntroductionAlongside the logic of care, many Western welfare states have introduced market elements or a logic of choice in their healthcare systems, which has led to consumerist behavior in patients. For the medical field, it is well documented how consumerism creates complex ethical dilemmas and undermines ways of thinking and acting crucial to healthcare. Little is known about these dynamics in mental healthcare.MethodsThis study used a qualitative mixed methods design, combining 180 online patient narratives (blogs) with 25 interviews with therapists in a grounded theory approach.ResultsFindings show that articulate behavior can be divided into two categories: assertive and adamant. While assertive behavior is understood as an integral, reciprocal part of therapy and is stimulated by therapists, adamant or consumerist behavior is experienced as damaging the relationship—the “commodity” the patient is seeking to obtain, as the single most important predictor of treatment success. Findings also show that articulate behavior in both varieties takes a different shape over time during the course of treatment.DiscussionAdamant behavior clashes with the internal logic of care, which is especially problematic in mental healthcare where the relationship with one's therapist is key to successful treatment. Therefore, patients should be taught and helped to display assertive behavior without resorting to adamancy. Individual therapists cannot achieve this alone; this endeavour should be supported by their organizations, societal beliefs about therapy and policy choices.

It is since the beginning of the so-called ‘digital revolution’ in the 1950s that technological tools have been developed to simplify and optimise traditional, time-consuming, and laborious anamnestic collection for many physicians. In recent years, more and more sophisticated ‘automated’ anamnestic collection systems have been developed, to the extent that they can actually enter daily clinical practice. This article not only provides a historical overview of the evolution of such tools, but also explores the ethical and medico-legal implications of the transition from traditional to digital anamnesis, including the protection of data confidentiality, the preservation of the communicative effectiveness of the doctor–patient dialogue and the safety of care in patients with poor digital and health literacy.

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. [ABSTRACT FROM AUTHOR]

Abstract 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.

This study examines the endings of one hundred cancer patient survivor narratives featured on the websites of three leading US teaching hospitals as the "final words," signifying closure and shaping readers' lasting impression of the experiences described. These narratives, posted between 2019 and 2021, appear as blog posts included as part of the corresponding hospitals' websites promotional material. The one hundred cancer survivor story endings, positioned at the point of resolution within the story arc, are examined for their function within the narrative structure. In addition, endings are analyzed as rhetorical devices, intended to shape the readers' perception of events by suggesting the conflict (cancer) is no longer a significant threat to the story's subject (cancer patient). Thus, the central research question is: How do cancer survivor story endings serve to frame the patient's experience with cancer as the narrative's complicating event that, within the traditional storytelling formula employed, requires resolution? This analysis also includes implications for ethical practices in creating promotional content by teaching hospitals that advocate a scientific, evidentiary based approach to cancer treatment. Initial findings reveal that of the one hundred cancer survivor narrative endings, ninety-three are direct quotes--known, in journalistic terms as "kicker quotes"--while the remaining are non-quote summations. Therefore, attention is given to the significance of ending narrative testimonials with quotes, the majority of which are in the featured patient's voice. Endings are examined using qualitative textual analysis, documenting common themes and tropes, in addition to using grounded theory as the basis for conducting emergent qualitative research. [ABSTRACT FROM AUTHOR]

Background: Enthusiasm has grown about using patients' narratives—stories about care experiences in patients' own words—to advance organizations' learning about the care that they deliver and how to improve it, but studies confirming association have not been published. Purpose: We assessed whether primary care clinics that frequently share patients' narratives with their staff have higher patient experience survey scores. Approach: We conducted a 1-year study of 5,545 adult patients and 276 staff affiliated with nine clinics in one health system. We used multilevel models to analyze survey data from patients about their experiences and from staff about exposure to useful narratives. We examined staff confidence in own knowledge as a moderator because confidence can influence use of new information sources. Results: Frequency of sharing useful narratives with staff was associated with patient experience scores for all measures, conditional on staff confidence in own knowledge (p <.01). For operational measures (e.g., care coordination), increased sharing correlated with subsequently higher performance for more confident staff and lower performance or no difference for less confident staff, depending on measure. For relational measures (e.g., patient–provider communication), increased sharing correlated with higher scores for less confident staff and lower scores for more confident staff. Conclusion: Sharing narratives with staff frequently is associated with better patient experience survey scores, conditional on confidence in knowledge. Practice Implications: Frequently sharing useful patient narratives should be encouraged as an organizational improvement strategy. However, organizations need to address how narrative feedback interacts with their staff's confidence to realize higher experience scores across domains. [ABSTRACT FROM AUTHOR]

Uncertainty is inherent in medicine and has been an enduring focus of enquiry in medical sociology. It is a particularly salient analytic concept in the context of a new emerging disease. Whilst a substantial body of work explores how clinicians manage uncertainty, scholarship that explores patients’ experiences and ways of managing uncertainty is less well developed. In this cross country research, we draw on two narrative interview studies with patients who were critically ill with Covid-19 in Brazil and in the United Kingdom (UK) in the first year of the pandemic. In Brazil, Covid-19 surveillance was introduced in hospitals, with tight restrictions on visitors in non-Covid-19 services and a visitor ban in Covid-19 services. In the UK, hospital visits were suspended entirely for several months, and later seriously restricted. Using a cross country analysis, we mobilize the concept of ‘navigation’ to highlight how a rapidly changing environment facilitates or impedes how well patients could act in, and on, their circumstances. We explore the ways in which four intersecting uncertainties affected patients, namely those relating to contagion, treatment, protocols and practice, and individual prognosis. We demonstrate how patients sought to navigate these uncertainties through relationships – with family members, clinical staff, other patients and technologies – which could provide temporary relief. We argue that it is important to attend to how patients invest in relationships in critical care, and to facilitate and support these wherever possible.

Abstract 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.

Abstract 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.

This comprehensive study investigates the intricate relationship between post herpetic neuralgia (PHN) and the quality of life (QoL) experienced by individuals who have endured this persistent neuropathic pain condition. Employing a mixed-methods approach, encompassing both quantitative assessments and qualitative exploration, our research unveils the multidimensional impact of PHN on physical, emotional, and social well-being. Quantitative analyses employing standardized QoL assessment tools reveal significant impairments in daily activities, social interactions, and overall life satisfaction among PHN patients. Pain severity assessments are correlated with functional limitations, illuminating the profound influence of PHN on mobility, sleep, and routine tasks. Qualitative insights gleaned from the narratives of PHN patients provide a rich understanding of their lived experiences. Beyond quantifiable measures, these narratives elucidate the nuanced aspects of the PHN journey, capturing the emotional toll and adaptive strategies employed by individuals striving to maintain a semblance of normalcy. The study also scrutinizes the efficacy of various treatment modalities, ranging from pharmacological interventions to complementary therapies. Results indicate variable success in pain management and underscore the need for personalized, multimodal approaches to address the unique challenges posed by PHN. Additionally, the research identifies barriers impeding optimal care for PHN patients, including healthcare disparities and stigma. By delineating these barriers, our study contributes to the development of targeted interventions aimed at improving access to comprehensive care for individuals grappling with PHN. In conclusion, this study advances our understanding of the complex interplay between PHN and QoL, offering valuable insights for healthcare practitioners, policymakers, and researchers. The findings not only underscore the urgency of tailored interventions but also highlight avenues for future research and enhancements in therapeutic strategies for those navigating the intricate landscape of post herpetic neuralgia. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Chirag Patel, Joseph Snyder College of Medicine and Public Health, Flinders University, Flinders Medical Centre, Bedford Park, SA, AustraliaCorrespondence: Chirag Patel, College of Medicine and Public Health, Flinders University, Flinders Medical Centre, Bedford Park, SA, Australia, Tel +61 431 773124, Email chirag.patel@flinders.edu.auPurpose: 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.Keywords: learning, ophthalmology, whiteboard animation, patient narratives, curriculum

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract 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

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. [ABSTRACT FROM AUTHOR]

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 [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This article conveys how taking patient knowledge seriously can improve patient experience and further medical science. In clinical contexts related to infection-associated chronic conditions and other complex chronic illnesses, patient knowledge is often undervalued, even when clinicians have limited training in diagnosing and treating a particular condition. Despite growing acknowledgement of the importance of patients as 'stakeholders', clinicians and medical researchers have yet to fully develop ways to evaluate and, when appropriate, meaningfully incorporate patient knowledge-experiential, scientific, social scientific, historical or otherwise-into clinical practice and research. We argue that there are opportunities for clinicians and researchers to collaborate with patients and colleagues from the social sciences and humanities. We use two examples to demonstrate why patient knowledge should inform medical engagement with chronic and complex conditions. The first comes from a disability studies scholar who describes the social biases that can sideline patient expertise, and the second is from an anthropologist whose reading in medical humanities led to an effective treatment for her recovery. Rather than merely acknowledging 'lived experience', clinical and research teams should include patients with complex chronic conditions as 'knowledge partners'. These patients occupy unique and valuable epistemological positions, and their knowledge should be considered with as much openness and rigour as other forms of medical knowledge. As more medical schools, residency programmes and hospitals emphasise the need for 'deep listening' and patient input, we encourage meaningful engagement with patients whose insights can provide crucial knowledge for clinical and scientific advancement., Competing Interests: Competing interests: EM receives a stipend from Elsevier for her work as Editor in Chief of SSM-Mental Health., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Parkinson’s Disease(PD), one of the most serious neurodegenerative diseases that known huge controversy on social networks. Following medical lexicons, few approaches have been extended to leverage sentiment information that obviously reflects the patient’s health status in terms of related-narratives observations. It is been crucial to analyze online narratives and detect sentiment in patients’ self-reports. In this paper, we propose an automatic concept-level neural network method to distilling genuine sentiment in patients’ notes as medical polar facts into true positives and true negatives. Towards building emotional Parkinsonism assisted method from Parkinson’s Disease daily narratives di- gests, we characterize polar facts of defined medical configuration space through distributed biomedical representation at the concept-level as- sociated with real-world entities, which are operated to quantifying the emotional status of the speaker context. We conduct comparisons with state-of-art neural networks algorithms and biomedical distributed systems. Finally, as a result, we achieve an 85.3% accuracy performance, and the approach shows a well-understanding of medical natural language concepts.

The focus on cancer rehabilitation has increased, but breast cancer patients still report unmet rehabilitation needs. Since many women today will live long beyond their diagnosis, there are multiple challenges for the healthcare system in supporting these women in their new life situation. A more individualized approach is seen as necessary to optimize the rehabilitation for survivors. Pathographies, i.e., autobiographical or biographical accounts of experiences of illness, expose us to personal accounts of the journey through illness and treatment, offering us details, emotions, phrasings, and imagery from an individual perspective. In this literary study, we have analyzed two contemporary Swedish-speaking pathographies about breast cancer. In our analysis, we have presented perspectives on survivorship, and the authors’ ways of conveying their breast cancer experiences through narrative. The pathographies envision the prominent impact the breast cancer has on the authors’ lives. Narratives of survivorship have the potential to complement the more general medical knowledge with their nuanced and multifaceted stories of breast cancer. Learning from this type of material may improve the understanding of the complexity of breast cancer survivorship issues. This may be a way to become more attuned to identifying individual needs and preferences of breast cancer patients.

Abstract Background Understanding peoples’ evaluations of their health care is important to ensure appropriate health‐care services. Objectives To understand what factors influence peoples’ satisfaction with care and how interpersonal trust is established between doctors and cancer patients in Germany. Design A narrative interview study that included women with a diagnosis of breast cancer and men with a diagnosis of prostate cancer. A question‐focused analysis was conducted. Setting and participants Interviewees were sought across Germany through self‐help organizations, clinics, rehabilitation facilities, physicians and other health‐care professionals, in order to develop modules on experiencing cancer for the website krankheitserfahrungen.de (illness experiences.de). Results Satisfaction was related to the perception of having a knowledgeable and trusted physician. Trust was developed through particular interactions in which ‘medical expertise’ and ‘humaneness’ were enacted by physicians. Humaneness represents the ability of physicians to personalize medical expertise and thereby to convey working in the individual's best interest and to treat the patient as an individual and unique human being. This was fostered through contextual and relational factors including among others setting, time, information transfer, respect, availability, profoundness, sensitivity and understanding. Conclusion It was the ability to make oneself known to and know the patient in particular ways that allowed for satisfying care experiences by establishing interpersonal trust. This suggests the importance of conceptualizing the doctor‐patient relationship as a fundamentally reciprocal human interaction of caregiving and care‐receiving. At the core of the satisfying care experiences lies a doctor‐patient relationship with a profoundly humane quality.

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. 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. 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. 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. • Living kidney donors (LKDs) face several challenges in their donation trajectory. • We conducted a review and synthesis of published unsolicited first-person narratives of LKDs. • Five distinct themes emerged surrounding the donation experience and healthcare needs. • Educational and care needs and respect for donor autonomy were highlighted. • Some LKDs faced unanticipated outcomes and advocate for a balanced view of donation. [ABSTRACT FROM AUTHOR]

An important concern for health care professionals is that standardized patient surveys may not fully capture all the topics that are important to patients. As a result, health care professionals may not have a complete picture of what their patients experience. The purpose of this research is to utilize a state-of-the-art Natural Language Processing technique to make sense of patients’ solicited, unstructured comments to gain a deeper and broader understanding of their experiences in the hospital. We analyzed a large dataset of inpatient survey responses (48,592 patients generating 65,998 comments) by a patient experience survey vendor for an eleven-hospital health care system in a large Midwest US city. Comments were first analyzed by Top2Vec algorithm in Python and more than 650 groupings of comments were then reduced into 20 sub-domains within 4 topic domains to better understand patient feedback on their hospital experience. We find distinct domains in the textual data that are not completely captured by survey domains. Furthermore, these domains match components of a hierarchical model of health service quality: interpersonal, technical, environmental, and administrative quality. Our findings broaden and deepen understanding of domains on standardized surveys. That is, completely new issues that are not measured in structured surveys are found in patient comments, and even when patient comments can be assigned to specific domains (e.g., nurse communication, discharge, etc.) found in standardized surveys, novel sub-topics provide a more nuanced understanding of patients’ hospital experiences. Novel sub-topics found in patient comments include clinicians’ diagnostic skill, compassionate care, team coordination, transfer processes, roommates, and others. Health care organizations should utilize state-of-the-art methods to mine insights from patient comments, and ensure they have processes, resources, and capabilities needed to translate insights into action. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens.

The authors conducted a qualitative analysis of thirty-seven issues of The DDU Review, a newsletter produced by residents of the Dual Diagnosis Unit, a residential unit for people who had diagnoses of developmental disability and serious mental illness in the Central State Hospital (Indiana, USA). The analysis of the newsletters produced between September 1988 and June 1992 revealed three major themes: 1) the mundane; 2) good behavior; and 3) advocacy. Contrary to the authors' expectations, the discourse of medicalization—such as relations with physicians, diagnoses, and medications—receive little attention. Instead, the patient-journalists focus on prosaic aspects of institutional life. The patients used their writing as a form self-definition and advocacy. The authors argue that even though it is tempting to consider the patients' emphasis on good behavior as evidence of institutional control, internalized discipline, and medicalization, a more nuanced interpretation, which focuses on how the patients' understood their own experiences, is warranted. Researchers must also recognize the ways in which The DDU Review reveals the patient-journalists' experience of an institutional life that includes non-medical staff (attendants, secretaries, and therapists), varied social relationships among patients, and negotiated freedoms. [ABSTRACT FROM AUTHOR]

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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

In the last two decades, there has been an explosion of scholarship in the phenomenology of health and illness of great practical significance for clinicians and the allied health professions. 'Healing' has been distinguished from medical 'cure' insofar as it involves a process of existential re-integration even in the face of ongoing illness and incapacity. This article goes further than much existing literature in the field: it examines ways in which illness can trigger for some ' transformational healing'-that is, not simply a return to previous functioning, but positive alterations that open one's life to enhanced fulfilment, authenticity and/or connection. Using philosophical resources and 'pathographies', first-person accounts of illness and healing, we examine six forms, often interconnected, of transformational healing. These involve, in turn: vulnerability, intimacy, resilience, presence, gratitude and transcendence In placing a spotlight on ways in which serious illness, injury and disability can inform positive transformations, we are not minimising the suffering often associated with such conditions. Nonetheless, many individuals experience life-enhancements despite, or even because of, the effects of suffering which can reveal personal strengths, deepened intimacy with others and heightened appreciation of life. The possibility of transformational healing, while far from a universal experience, has personal, philosophical and clinical significance not to be overlooked., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

As the focus on end-of-life care intensifies, so too does the need to better understand the experiences of patients, caregivers and physicians. Delivering empathetic care requires a shared understanding of illness and its meaning and impact. The narratives of patients, caregivers and physicians each offer a distinct perspective on clinical experiences, yet comparative research is uncommon. This study compares written narratives about end-of-life illness and care by these groups.We created an archive of 332 first-person written narratives about end of life (patient=65, caregiver=156, physician=111) published between 1 January 2010 and 31 December 2019 through searching public domains (eg, national newspapers), personal blogs, and academic and literary journals in Canada. A comparative narrative analysis was conducted for patterns of content (eg, theme) and strategy (eg, characterisation).All three groups wrote about feeling gratitude. Patients also emphasised coping with change and carrying on. Caregivers further focused on grieving loss, and physicians most often wrote about valuing humanism. Physicians were most likely to ascribe agency to someone (ie, patients) or something (ie, death) other than themselves and to decentre themselves in the story. Patients and physicians most often made the patient the main character of their stories, while caregivers were as likely to centre the story on themselves as on the patient. Physicians were most likely to describe death as a source of tension, while patients and caregivers described the illness experience, often comparing it to battle. Physicians and caregivers tended to write testimonies, while patients wrote quests.Narrative research can illuminate unique aspects of end-of-life care. While death is a shared experience, each group approaches it differently. The disconnects have potential consequences for how end of life is experienced-whether patients' values are honoured, whether caregivers receive support, and whether physicians experience burn-out. We need to foster learning experiences that integrate these unique perspectives into medical education and practice, including leveraging the affordances of studying written narratives towards this end., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

The focus on cancer rehabilitation has increased, but breast cancer patients still report unmet rehabilitation needs. Since many women today will live long beyond their diagnosis, there are multiple challenges for the healthcare system in supporting these women in their new life situation. A more individualized approach is seen as necessary to optimize the rehabilitation for survivors. Pathographies, i.e., autobiographical or biographical accounts of experiences of illness, expose us to personal accounts of the journey through illness and treatment, offering us details, emotions, phrasings, and imagery from an individual perspective. In this literary study, we have analyzed two contemporary Swedish-speaking pathographies about breast cancer. In our analysis, we have presented perspectives on survivorship, and the authors' ways of conveying their breast cancer experiences through narrative. The pathographies envision the prominent impact the breast cancer has on the authors' lives. Narratives of survivorship have the potential to complement the more general medical knowledge with their nuanced and multifaceted stories of breast cancer. Learning from this type of material may improve the understanding of the complexity of breast cancer survivorship issues. This may be a way to become more attuned to identifying individual needs and preferences of breast cancer patients. [ABSTRACT FROM AUTHOR]

Background: Understanding peoples' evaluations of their health care is important to ensure appropriate health‐care services. Objectives: To understand what factors influence peoples' satisfaction with care and how interpersonal trust is established between doctors and cancer patients in Germany. Design: A narrative interview study that included women with a diagnosis of breast cancer and men with a diagnosis of prostate cancer. A question‐focused analysis was conducted. Setting and participants: Interviewees were sought across Germany through self‐help organizations, clinics, rehabilitation facilities, physicians and other health‐care professionals, in order to develop modules on experiencing cancer for the website krankheitserfahrungen.de (illness experiences.de). Results: Satisfaction was related to the perception of having a knowledgeable and trusted physician. Trust was developed through particular interactions in which 'medical expertise' and 'humaneness' were enacted by physicians. Humaneness represents the ability of physicians to personalize medical expertise and thereby to convey working in the individual's best interest and to treat the patient as an individual and unique human being. This was fostered through contextual and relational factors including among others setting, time, information transfer, respect, availability, profoundness, sensitivity and understanding. Conclusion: It was the ability to make oneself known to and know the patient in particular ways that allowed for satisfying care experiences by establishing interpersonal trust. This suggests the importance of conceptualizing the doctor‐patient relationship as a fundamentally reciprocal human interaction of caregiving and care‐receiving. At the core of the satisfying care experiences lies a doctor‐patient relationship with a profoundly humane quality. [ABSTRACT FROM AUTHOR]

The aim of this study was to co-create a definition and generic descriptors for person-centred coordinated care for Ireland generated from service users’ narratives. An overarching action research approach was used to engage and empower people to tangibly impact health policy and practice. Through focus groups and a qualitative survey, primary data were collected from a national sample of health services users, caregivers and health care service users’ representative groups. Thematic analysis was used to analyse the data. Three major themes were co-produced as essential care elements. These were: ‘My experience of healthcare’, ‘Care that I am confident in’ and ‘My journey through healthcare’. Through an IPPOSI partner project steering group and their membership groups’ contribution, these themes were further refined into a definition of person-centred coordinated care and nineteen related generic descriptors. Key findings demonstrate that within complex, fragmented healthcare systems, the subjective expectations of service users should be integrated into care delivery, with a scaffolding of services to meet service users’ needs between care settings and disciplines and over time.

Understanding patient and caregiver experiences is a critical component of the conception, design, and implementation of clinical research studies. The “Database of Individual Patient Experiences” (DIPEx) is an innovative, evidence-based approach for eliciting rich information about health experiences. We conducted a formative evaluation with 14 pediatric oncology researchers to assess the value of using data from a DIPEx study on patient and caregiver experiences with childhood cancer to inform patient-centered research in pediatric oncology. Participants identified barriers to incorporating patient perspectives and experiences into their research and how the DIPEx approach could be leveraged to facilitate this practice.

ObjectivesThe aim of the present study was to investigate second-year medical students' understanding of quality of life associated with childhood inflammatory bowel disease (IBD).MethodsA cross-sectional study in a major teaching institution in San Francisco was carried out. A questionnaire was administered following an hour-long gastroenterology lecture, which featured 2 young patients with pediatric-onset IBD who addressed everyday life with the disease. Analyses of numerate responses to the questionnaire were paired with a content and thematic analysis of audiotape recordings of the patients' commentaries.ResultsMedical students' responses to the patient interviews were extremely positive. Medical students gained a new awareness of the psychosocial complexities associated with living with a pediatric chronic illness and a new way of thinking about the meaning of "healthy." Despite listening to 2 healthy young patients, however, the medical students still conceptualized pediatric IBD in mostly, although not exclusively, negative terms.ConclusionsMedical students' perceptions of pediatric IBD improved as a result of listening to the patient interviews. Although this teaching modality effectively introduced students to a complex condition, it did not overcome their unfavorable impression of the effect of IBD on children's lives. The symptoms associated with IBD have stigma attached to them, and these stereotypes influence how medical students perceive those living with this chronic illness. More research and training in this area is necessary.

The increasing popularity of the term 'person‐centred' in the healthcare literature and a wide range of ideals and practices it implies point to the need for a more inclusive and holistic healthcare provision. A framework developed in a Swedish context suggested narrative elicitation as a key practice in transition to person‐centred care. Initiating clinical communication by inviting people to tell their stories makes persistent yet often subtle problems in clinical communication visible. By drawing upon an observational study on narrative elicitation and vignette‐based focus group interviews with nurses, our aim is to trace 'credibility deficits' (Fricker 2007. Epistemic Injustice. Power and the Ethics of Knowing. Oxford: Oxford University Press) and 'credibility excesses' (Medina 2011, Social Epistemology, 25, 1, 15–35, 2013, The Epistemology of Resistance: Gender and Racial Oppression, Epistemic Injustice, and the Social Imagination. Oxford: Oxford University Press) in narrative elicitation. We argue that narrative elicitation may be one way to tackle epistemic injustices by giving voice to previously silenced groups, yet it is not enough to erase the effects of 'credibility deficits' in clinical communication. Rather than judging individual professionals' success or failure in eliciting narratives, we underline some extrinsic problems of narrative elicitation, namely structural and positional inequalities reflecting on narrative elicitation and the credibility of patients. 'Credibility excesses' can be useful and indicative to better understand where they are missing. [ABSTRACT FROM AUTHOR]

The aim of this study was to co-create a definition and generic descriptors for personcentred coordinated care for Ireland generated from service users' narratives. An overarching action research approach was used to engage and empower people to tangibly impact health policy and practice. Through focus groups and a qualitative survey, primary data were collected from a national sample of health services users, caregivers and health care service users' representative groups. Thematic analysis was used to analyse the data. Three major themes were co-produced as essential care elements. These were: 'My experience of healthcare', 'Care that I am confident in' and 'My journey through healthcare'. Through an IPPOSI partner project steering group and their membership groups' contribution, these themes were further refined into a definition of person-centred coordinated care and nineteen related generic descriptors. Key findings demonstrate that within complex, fragmented healthcare systems, the subjective expectations of service users should be integrated into care delivery, with a scaffolding of services to meet service users' needs between care settings and disciplines and over time. [ABSTRACT FROM AUTHOR]

Abstract Background Little is known about the usefulness of online ratings when searching for a hospital. We therefore assess the association between quantitative and qualitative online ratings for US hospitals and clinical quality of care measures. Methods First, we collected a stratified random sample of 1000 quantitative and qualitative online ratings for hospitals from the website RateMDs. We used an integrated iterative approach to develop a categorization scheme to capture both the topics and sentiment in the narrative comments. Next, we matched the online ratings with hospital-level quality measures published by the Centers for Medicare and Medicaid Services. Regarding nominally scaled measures, we checked for differences in the distribution among the online rating categories. For metrically scaled measures, we applied the Spearman rank coefficient of correlation. Results Thirteen of the twenty-nine quality of care measures were significantly associated with the quantitative online ratings (Spearman p = ±0.143, p

Patient narratives have emerged as promising vehicles for making health care more responsive by helping clinicians to better understand their patients' expectations, perceptions, or concerns and encouraging consumers to engage with information about quality. A growing number of websites incorporate patients' comments. But existing comments have fragmentary content, fail to represent less vocal patients, and can be manipulated to "manage" providers' reputations. In this article, we offer the first empirical test of the proposition that patient narratives can be elicited rigorously and reliably using a five-question protocol that can be incorporated into large-scale patient experience surveys. We tested whether elicited narratives about outpatient care are complete (report all facets of patient experience), balanced (convey an accurate mix of positive and negative events), meaningful (have a coherent storyline), and representative (draw fulsome narratives from all relevant subsets of patients). The tested protocol is strong on balance and representativeness, more mixed on completeness and meaningfulness. [ABSTRACT FROM AUTHOR]

Background: The significance of metaphors for the experience of cancer has been the topic of extensive previous research, with "Battle" and "Journey" metaphors standing out as key. Adaptation to the patient's use of metaphor is generally believed to be an important aspect of person-centered care, especially in palliative care. The aim of this study was to investigate the use of metaphors in blogs written in Swedish by people living with advanced cancer and explore possible patterns associated with individuals, age and gender. Methods: The study is based on a dataset totaling 2,602,479 words produced some time during the period 2007–2016 by 27 individuals diagnosed with advanced cancer. Both qualitative and quantitative procedures were used, and the findings are represented as raw frequencies as well as normalized frequencies per 10,000 words. Our general approach was exploratory and descriptive. The Mann-Whitney U test was used to analyze statistical significance. Results: Our results confirm the strong foothold of "Journey" and "Battle" metaphors. "Imprisonment" and "Burden" metaphors were also used by the majority of the individuals. The propensity to use metaphors when describing the cancer experience was found to differ extensively across the individuals. However, individuals were not found to opt for one conceptualization over the other but tended to draw on several different metaphor domains when conceptualizing their experience. Socio-demographic factors such as age or gender were not found to be strong predictors of metaphor choice in this limited study. Conclusions: Using a range of different metaphors allows individuals with advanced cancer to highlight different aspects of their experience. The presence of metaphors associated with "Journey", "Battle", "Imprisonment" and "Burden" across individuals could be explained by the fact that the bloggers are part of a culturally consistent cohort, despite variations in age, sex and cancer form. Awareness of metaphors commonly used by patients can enhance health professionals' capacity to identify metaphorical patterns and develop a common language grounded in the patients' own metaphor use, which is an important requisite for person-centered palliative care. [ABSTRACT FROM AUTHOR]