patient narratives
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2021 ◽  
Author(s):  
Daisy Massey ◽  
Anna D Baker ◽  
Diana Zicklin Berrent ◽  
Nick Güthe ◽  
Suzanne Pincus Shidlovsky ◽  
...  

AbstractTo introduce the perspective of patients who have PASC with vibrations and tremors as a prominent component, we leveraged the efforts by Survivor Corps, a grassroots COVID-19 patient advocacy group, to gather information from people in their Facebook group suffering from vibrations and tremors. Survivor Corps collected 140 emails and 450 Facebook comments from members. From the emails, we identified 22 themes and 7 broader domains based on common coding techniques for qualitative data and the constant comparative method of qualitative data analysis. Facebook comments were analyzed using Word Clouds to visualize frequency of terms. The respondents’ emails reflected 7 domains that formed the basis of characterizing their experience with vibrations and tremors. These domains were: (1) symptom experience, description, and anatomic location; (2) initial symptom onset; (3) symptom timing; (4) symptom triggers or alleviators; (5) change from baseline health status; (6) experience with medical establishment; and (7) impact on people’s lives and livelihood. There were 22 themes total, each corresponding to one of the broader domains. The Facebook comments Word Cloud revealed that the 10 most common words used in comments were: tremors (64), covid (55), pain (51), vibrations (43), months (36), burning (29), feet (24), hands (22), legs (21), back (20). Overall, these patient narratives described intense suffering, and there is still no diagnosis or treatment available.


2021 ◽  
Author(s):  
◽  
Susan Marie Barone

<p>This thesis presents research on how doctors and patients negotiate meaning through interaction, focusing on the role of narrative in the medical encounter. Within sociolinguistics, most previous studies using discourse analysis to analyze patients’ narratives have adopted the canonical (Labovian) framework. This thesis adds more recent approaches to narrative analysis, within an interactional sociolinguistics (IS) framework in order to examine the relationship between doctor elicitations and patient narratives. The analysis also explores the clinical approach of Narrative Medicine (NM), which offers patients “space” in which to construct their narratives, to create an interdisciplinary lens for exploring data. The data comprised 69 videotaped medical interviews, amounting to 18 hours of naturally occurring medical interactions, plus evaluative feedback from questionnaires and interviews with 12 doctors. All interactions were initially analyzed for canonical narrative components. Twelve interactions were then selected for more detailed analysis on the basis of the frequency of doctors’ elicitations, which represent medical interview approaches. The analysis of these interactions demonstrates how and to what extent participant roles and identities frame the co-construction of patient narratives. Evaluations of three of the interactions by 12 doctors provided information on how aspects of patient narratives are perceived by clinicians, particularly with respect to the types and amounts of patient information considered necessary for making diagnostic decisions. Key findings demonstrate that both patients and doctors seek to construct narrative coherence. The analysis shows how the frame of developing narrative coherence offers insights on the interactional narratives as they are co-constructed by participants. Patients living with chronic illness may have difficulty constructing coherent narratives, and thus, strategies for developing narrative coherence are important for both patients and doctors when managing patients’ chronic illnesses. Additionally, in constructing narrative coherence, patients present important aspects of their identities potentially offering important information related to their illness and intervention. Evaluating doctors’ also engaged in using this frame which offers insight into one way doctors develop their professional identities and perhaps indicates the strength of the role of narrative in our lives. This research represents a first attempt to use both interactional sociolinguistics and NM to contribute to the understanding of doctor-patient interaction. Overall, the research indicates that narrative plays an important part in constructing relevant meanings in medical interactions between doctor and patient. Patients strive to create a coherent narrative as they present their medical problem to their doctor. Although this analysis provides further evidence of the relevance of the power asymmetry in medical interviews, it also suggests ways in which patients can shape their narratives to construct themselves as active agents to their benefit in medical interactions.</p>


2021 ◽  
Author(s):  
◽  
Susan Marie Barone

<p>This thesis presents research on how doctors and patients negotiate meaning through interaction, focusing on the role of narrative in the medical encounter. Within sociolinguistics, most previous studies using discourse analysis to analyze patients’ narratives have adopted the canonical (Labovian) framework. This thesis adds more recent approaches to narrative analysis, within an interactional sociolinguistics (IS) framework in order to examine the relationship between doctor elicitations and patient narratives. The analysis also explores the clinical approach of Narrative Medicine (NM), which offers patients “space” in which to construct their narratives, to create an interdisciplinary lens for exploring data. The data comprised 69 videotaped medical interviews, amounting to 18 hours of naturally occurring medical interactions, plus evaluative feedback from questionnaires and interviews with 12 doctors. All interactions were initially analyzed for canonical narrative components. Twelve interactions were then selected for more detailed analysis on the basis of the frequency of doctors’ elicitations, which represent medical interview approaches. The analysis of these interactions demonstrates how and to what extent participant roles and identities frame the co-construction of patient narratives. Evaluations of three of the interactions by 12 doctors provided information on how aspects of patient narratives are perceived by clinicians, particularly with respect to the types and amounts of patient information considered necessary for making diagnostic decisions. Key findings demonstrate that both patients and doctors seek to construct narrative coherence. The analysis shows how the frame of developing narrative coherence offers insights on the interactional narratives as they are co-constructed by participants. Patients living with chronic illness may have difficulty constructing coherent narratives, and thus, strategies for developing narrative coherence are important for both patients and doctors when managing patients’ chronic illnesses. Additionally, in constructing narrative coherence, patients present important aspects of their identities potentially offering important information related to their illness and intervention. Evaluating doctors’ also engaged in using this frame which offers insight into one way doctors develop their professional identities and perhaps indicates the strength of the role of narrative in our lives. This research represents a first attempt to use both interactional sociolinguistics and NM to contribute to the understanding of doctor-patient interaction. Overall, the research indicates that narrative plays an important part in constructing relevant meanings in medical interactions between doctor and patient. Patients strive to create a coherent narrative as they present their medical problem to their doctor. Although this analysis provides further evidence of the relevance of the power asymmetry in medical interviews, it also suggests ways in which patients can shape their narratives to construct themselves as active agents to their benefit in medical interactions.</p>


2021 ◽  
Vol 30 (3S) ◽  
pp. 916-921 ◽  
Author(s):  
Khaya D. Clark ◽  
Angela C. Garinis ◽  
Dawn Konrad-Martin

Purpose The engagement of patients as key stakeholders in their experience of care processes is a critical component of quality improvement efforts for both clinical care and translational research. Increasingly, health care systems are soliciting input from patients on care processes and experiences through surveys, patient interviews, and patient video narratives. The purpose of this viewpoint article is twofold: (a) to describe the increasing role of patient narratives about their experiences with adverse health conditions to inform patient-centered research and quality improvement efforts and (b) to present three patient narratives that highlight the real-world impacts of hearing loss and tinnitus, the life enhancing impacts of aural rehabilitation, and the importance of prospective ototoxicity monitoring in individuals with complex health conditions. Conclusion Patient narratives provide individual patient perspectives that can be used to build awareness of the range of experiences and impact of hearing disorders, and to explore patient preferences for when and how to implement hearing-related clinical services.


Author(s):  
Lindsay J DePalma ◽  
Lauren D Olsen ◽  
John H Evans

The scholarship on patient hope in biomedical technologies describes two narratives of hope: the biomedical and the individual. The biomedical narrative represents patients’ beliefs that the institution of science will eventually produce treatment for their disease, whereas the individual narrative represents patients’ beliefs that they can alter their prognosis through affective and behavioral modifications. The distinct analytical categories of “biomedical” and “individual,” however, fail to account for the fact that patient hope has been found to be much more complex. Building upon extant literature, we contribute to the understanding of the complexity of patient hope in biomedical technologies by examining a case that highlights interdependencies between the biomedical and individual narratives: hope in stem cell technologies (SCTs). We draw upon interviews with patients with Parkinson’s Disease, and find two narratives of hope: a biomedical narrative, as captured above, and an additional hybrid narrative, which we call a nature narrative. The nature narrative reflects patients’ beliefs that scientists will eventually create SCTs that will allow their individual body to naturally heal itself, which combines a biomedical and an individual narrative.


2021 ◽  
pp. jclinpath-2021-207640
Author(s):  
Hussein Uraiby ◽  
Ciaran Grafton-Clarke ◽  
Morris Gordon ◽  
Marco Sereno ◽  
Barbara Powell ◽  
...  

AimsThe levels of abstraction, vast vocabulary and high cognitive load present significant challenges in undergraduate histopathology education. Self-determination theory describes three psychological needs which promote intrinsic motivation. This paper describes, evaluates and justifies a remotely conducted, post-COVID-19 histopathology placement designed to foster intrinsic motivation.Methods90 fourth-year medical students took part in combined synchronous and asynchronous remote placements integrating virtual microscopy into complete patient narratives through Google Classroom, culminating in remote, simulated multidisciplinary team meeting sessions allowing participants to vote on ‘red flag’ signs and symptoms, investigations, histological diagnoses, staging and management of simulated virtual patients. The placement was designed to foster autonomy, competence and relatedness, generating authenticity, transdisciplinary integration and clinical relevance. A postpositivistic evaluation was undertaken with a validated preplacement and postplacement questionnaire capturing quantitative and qualitative data.ResultsThere was a significant (p<0.001) improvement in interest, confidence and competence in histopathology. Clinical integration and relevance, access to interactive resources and collaborative learning promoted engagement and sustainability post-COVID-19. Barriers to online engagement included participant lack of confidence and self-awareness in front of peers.ConclusionsFostering autonomy, competence and relatedness in post-COVID-19, remote educational designs can promote intrinsic motivation and authentic educational experiences. Ensuring transdisciplinary clinical integration, the appropriate use of novel technology and a focus on patient narratives can underpin the relevance of undergraduate histopathology education. The presentation of normal and diseased tissue in this way can serve as an important mode for the acquisition and application of clinically relevant knowledge expected of graduates.


2021 ◽  
Author(s):  
Mátyás Osváth ◽  
Orsolya Varga ◽  
Karolina Kósa

BACKGROUND Patient experiences constitute an independent dimension of health care quality that can be solicited by structured surveys or at dedicated online platforms. Unsolicited spontaneous patient narratives are much less used but potentially valuable means for gauging patient experiences. OBJECTIVE Our aim was to explore patient experiences in spontaneous patient blogs submitted during one decade to an online health forum. METHODS 1662 non-solicited individual blogs on patient experiences posted between 2009 and 2018 on a Hungarian internet forum were randomly sampled. 20% (n=346) of the blogs were used for qualitative content analysis. A coding framework was constructed based on previous research and taxonomies to analyse content, including specific experiences or episodes. Major categories and subcategories were constructed within the three major dimensions (structure, process, outcome) of Donabedian’s framework for health care quality. RESULTS Majority of blogs described a specific experience (94.2%) in healthcare; almost 40% occurred in tertiary care; 29.5% of the blogs even identified a specific hospital or department. 55.2% of the bloggers were patients themselves, and the majority (92.7%) were dissatisfied with the reported experience. Issues were most frequently related to physicians (65.2%). In terms of Donabedian’s dimensions, problems with human resources dominated “Structure” (74.1%) such as not enough or incompetent staff. Waiting time and access to care (69.19%) comprised the most frequent complaints of material resources within “Structure”. Within “Process”, episodes related to examination (42.86%) accounted for most of the complaints. Outcomes were identified in 60% of the blogs, and deterioration, complication, readmission, or death was reported in 62% of these episodes. CONCLUSIONS Donabedian’s model of healthcare quality was appropriate for the categorization of patient experiences. Regular monitoring of spontaneous patient reports is recommended to utilize them for healthcare quality improvement especially if reports provide specific details.


2021 ◽  
Author(s):  
Masaru Kamba ◽  
Masae Manabe ◽  
Shoko Wakamiya ◽  
Shuntaro Yada ◽  
Eiji Aramaki ◽  
...  

BACKGROUND Currently, a large number of patient narratives are available on various web services. On web question and answer (QA) services, patient questions often relate to medical needs. Therefore, we expect these questions to provide clues to understanding patients’ medical needs. OBJECTIVE This study aims to extract patient needs and classify them into thematic categories. To clarify the patient's needs would be the first step to solve social issues for cancer patients. METHODS The material of this study is patient question texts containing the keyword “breast cancer" in the Yahoo! Japan QA service, Yahoo! Chiebukuro, which contains over 60,000 questions on cancer. First, we convert the question text into a vector representation; then, the relevance between patient needs and existing cancer needs categories are calculated based on cosine similarity. RESULTS The proportion of correct classifications in our proposed method is approximately 70%. We reveal the variation and the number of needs from the results of classifying questions. CONCLUSIONS There are various clinical applications to applying the proposed method such as identifying the side effect signaling of drugs and the unmet needs of cancer patients. Revealing these needs is important to satisfy the medical needs of cancer patients.


2021 ◽  
Vol 34 (4) ◽  
pp. 709-723
Author(s):  
Hilde Luijks ◽  
Kees van Boven ◽  
Tim olde Hartman ◽  
Annemarie Uijen ◽  
Chris van Weel ◽  
...  

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