Introducing patient stories in health sciences education: the learning experiences of students.

BACKGROUND: It has been advocated that the development of medical school curricula must be informed by students, doctors in training, educators, employers, other health and social care professionals and patients, families and carers. Patients are widely employed to teach clinical and interpersonal skills, and while recognised as crucial in health education, they have mostly been offered a passive role. We assessed the impact of patients contributing personal illness narratives in the master curriculum of allied health care professionals on students' learning experiences. METHODS: We designed a module (Patient and Society) for a master's degree programme in Health Sciences at the University of Southern Denmark in collaboration with six patients. The patients contributed to the teaching by sharing and discussing their personal illness narrative. At the end of the module, as part of the exam, we asked the students to reflect on the patients' contribution to the module and how this affected their learning experiences. The 500-word exam responses of 29 students were analysed, in collaboration with six patients, using thematic analysis. RESULTS: Including patients' illness narratives lifted students' academic learning, and their personal and professional development. The stories brought theoretical concepts to life; it helped the students to obtain, retain, and apply academic knowledge. Actively and uninterrupted listening to patients' illness experiences promoted empathy and critical reflection on clinical practice. Faced with the impact of a disease on a person's life, seeing the healthcare system through a patient's lens made students reflect critically on the medical positivist model ruling the health care system focused on just fixing the medical problem with very little room for the illness experience. CONCLUSION: Our analyses support previous findings indicating that patient narratives are a powerful tool to achieve academic and professional development. Working with patients in health education has the potential to work towards a more inclusive epistemological stance in the health care system and health research.

Listen to me, I really am sick! Patient and family narratives of clinical deterioration before and during rapid response system intervention.

AIM: To explore patient and family narratives about their recognition and response to clinical deterioration and their interactions with clinicians prior to and during Medical Emergency Team (MET) activations in hospital. BACKGROUND: Research on clinical deterioration has mostly focused on clinicians' roles. Although patients and families can identify subtle cues of early deterioration, little research has focused on their experience of recognising, speaking up and communicating with clinicians during this period of instability. DESIGN: A narrative inquiry. METHODS: Using narrative interviewing techniques, 33 adult patients and 14 family members of patients, who had received a MET call, in one private and one public academic teaching hospital in Melbourne, Australia were interviewed. Narrative analysis was conducted on the data. RESULTS: The core story of help seeking for recognition and response by clinicians to patient deterioration yielded four subplots: (1) identifying deterioration, recognition that something was not right and different from earlier; (2) voicing concerns to their nurse or by family members on their behalf; (3) being heard, desiring a response acknowledging the legitimacy of their concerns; and (4) once concerns were expressed, there was an expectation of and trust in clinicians to act on the concerns and manage the situation. CONCLUSION: Clinical deterioration results in an additional burden for hospitalised patients and families to speak up, seek help and resolve their concerns. Educating patients and families on what to be concerned about and when to notify staff requires a close partnership with clinicians. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Clinicians must create an environment that enables patients and families to speak up. They must be alert to both subjective and objective information, to acknowledge and to act on the information accordingly. REPORTING METHOD: The consolidated criteria for reporting qualitative research (COREQ) guidelines were used for reporting. PATIENT OR PUBLIC CONTRIBUTION: The consumer researcher was involved in design, data analysis and publication preparation.

Using Patient Blogs on Social Media to Assess the Content Validity of Patient-Reported Outcome Measures: Qualitative Analysis of Patient-Written Blogs.

BACKGROUND: Patient-reported outcome measures (PROMs) are questionnaires that measure patient outcomes related to quality of life, health, and functioning, and are increasingly used to assess important outcomes from the patient's perspective. For PROMs to contribute to better health and better care, it is vital that their content validity be adequate. This requires patient involvement in various steps of PROM development. PROM developers not only recognize the benefits of patient involvement but also report difficulties in recruiting patients and experience patient involvement as time-consuming, logistically challenging, and expensive. OBJECTIVE: This study seeks to explore different strategies for disclosing the experiential knowledge of patients, namely through analyzing patient stories on the web and social media. The research questions are as follows: (1) how do bloggers living with a disease experience their health-related quality of life? (2) How are these experiences reflected in the domains and items of PROMs related to their disease? METHODS: First, a qualitative analysis of blogs written by patients was performed. Second, subthemes and underlying codes resulting from this qualitative analysis were systematically compared with the domains and items in PROMs for the respective diseases that the bloggers write about. Blogs were identified via the Google search engine between December 2019 and May 2021. RESULTS: Bloggers describe a wide range of experiences regarding their physical functioning and health; mental well-being; social network and support; daily life, education, work, and leisure; coping; and self-management. Bloggers also write about their positive and negative experiences with health care delivery, the organization of health care, and health care professionals. In general, patients' experiences as described in blogs were reflected in the domains and items of the PROMs related to their disease. However, except for diabetes mellitus, in all the sets of PROMs, potentially missing topics could be identified. Similarly, with the exception of Parkinson disease, all PROMs address issues that patients did not write about in their blogs and that might therefore be redundant. CONCLUSIONS: Web-based patient stories in the form of blogs reveal how people living with a certain disease experience their health-related quality of life. These stories enable analyses of patients' experiences that can be used to assess the content validity of PROMs. This can be a useful step for researchers who are looking for sets of measuring instruments that match their purposes.

Exploring the Impact of Storytelling for Hospitalized Patients Recovering from COVID-19.

There are mental and physical deficits associated with COVID-19 infection, particularly among individuals requiring hospitalization. Storytelling is a relational intervention that has been used to help patients make sense of their illness experiences and to share their experiences with others, including other patients, families and healthcare providers. Relational interventions strive to create positive, healing stories versus negative ones. In one urban acute care hospital, an initiative called the Patient Stories Project (PSP) uses storytelling as a relational intervention to promote patient healing, including the development of healthier relationships among themselves, with families and with healthcare providers. This qualitative study employed a series of interview questions that were collaboratively developed with patient partners and COVID-19 survivors. The questions asked consenting COVID-19 survivors about why they chose to tell their stories and to flesh out more about their recovery process. Thematic analyses of six participant interviews resulted in the identification of key themes along a COVID-19 recovery pathway. Patients' stories revealed how survivors progress from being overwhelmed by their symptoms to making sense of what is happening to them, providing feedback to their care providers, feeling gratitude for care received, becoming aware of a new state of normal, regaining control of their lives, and ultimately discovering meaning and an important lesson behind their illness experience. Our study's findings suggest that the PSP storytelling approach holds potential as a relational intervention to support COVID-19 survivors along a recovery journey. This study also adds knowledge about survivors beyond the first few months of recovery.

Effects of an empathy enhancement program using patient stories on attitudes and stigma toward mental illness among nursing students.

Objective: This study aims to explore the impact of an empathy intervention through patients' stories and investigate its impact on attitudes and stigma toward mental illness among nursing students prone to hold prejudices against this condition. Methods: Using a quasi-experimental pretest-posttest design, this study focused on nursing students and examined the effects of an empathy enhancement program targeting individuals with mental illnesses on communication, social distance, and prejudice. Ninety third-year nursing students from S and C cities and H and C universities enrolled in psychiatric nursing courses participated in the study. The intervention lasted 4 weeks and used the patient's story to facilitate a participatory approach to understanding the patient's life and encouraging mutual growth and expansion of consciousness in the therapeutic relationship. Age was treated as a covariate and analyzed using a two-way repeated-measure analysis of covariance. Results: The Empathy Enhancement Program Using Patient Stories (EEP-PS) group and the clinical practicum group showed no significant differences in communication, social distance, and empathy scores between the two groups or across different time points. However, variations were observed when examining specific subdomains within each group and across time points. Informative communication (F = 10.34, p = 0.002) and affiliative communication (F = 21.60, p < 0.001), which are subcategories of communication, increased significantly in the posttest compared to the pretest. Among social distances, interpersonal-physical distance decreased significantly in the posttest compared to the pretest (F = 31.02, p < 0.001). Prejudice of incompetence (F = 6.52, p = 0.012) and prejudice of risk (F = 14.37, p < 0.001) were significantly lower in the posttest than in the pretest. Conclusion: Both the EEP-PS and clinical practicum groups experienced improvements in communication, social distance, and prejudice toward individuals with mental illness. This study suggests that direct patient interactions and the use of patient narratives as indirect methods are effective approaches for enhancing attitudes and reducing stigma toward mental illness among nursing students.

Benefits and harms of patient stories on social media from the perspective of healthcare providers and administrators in Ontario.

There has been a growing use of social media by patients to share their healthcare experiences and produce information that can be helpful to other patients seeking healthcare services. These stories can reveal issues in healthcare quality. However, faced with the inherent risks of social media, healthcare providers have been skeptical about the value of these stories, and many healthcare systems have adopted restrictive and protective policies to control the use of social media by healthcare providers. This study explores healthcare providers' and administrators' perspectives on patient stories on social media and whether they can use the stories to evaluate healthcare experiences. Semi-structured interviews (n = 21) were conducted with healthcare providers and administrators, including physicians, nurses, and quality managers in Ontario, Canada, between April 2018 and May 2019. Inductive and data-driven thematic analysis was used to analyze the data. Several barriers prevent healthcare providers from realizing the benefits of social media, including concerns about the quality of patients' feedback, the professional codes of conduct, and the time and effort required to process these stories. The study findings suggest that cultural changes in the healthcare system might be required to foster the use of social media for healthcare quality improvement and enable the development of a safe patient-provider communication environment that facilitates the exchange of constructive feedback between the two parties without the fear of legal consequences, breaches of patient privacy, or violation of professional codes of conduct.

Do Personal Stories Make Patient Decision Aids More Effective? An Update from the International Patient Decision Aids Standards.

BACKGROUND: This article evaluates the evidence for the inclusion of patient narratives in patient decision aids (PtDAs). We define patient narratives as stories, testimonials, or anecdotes that provide illustrative examples of the experiences of others that are relevant to the decision at hand. METHOD: To evaluate the evidence for the effectiveness of narratives in PtDAs, we conducted a narrative scoping review of the literature from January 2013 through June 2019 to identify relevant literature published since the last International Patient Decision Aid Standards (IPDAS) update in 2013. We considered research articles that examined the impact of narratives on relevant outcomes or described relevant theoretical mechanisms. RESULTS: The majority of the empirical work on narratives did not measure concepts that are typically found in the PtDA literature (e.g., decisional conflict). Yet, a few themes emerged from our review that can be applied to the PtDA context, including the impact of narratives on relevant outcomes (knowledge, behavior change, and psychological constructs), as well as several theoretical mechanisms about how and why narratives work that can be applied to the PtDA context. CONCLUSION: Based on this evidence update, we suggest that there may be situations when narratives could enhance the effectiveness of PtDAs. The recent theoretical work on narratives has underscored the fact that narratives are a multifaceted construct and should no longer be considered a binary option (include narratives or not). However, the bottom line is that the evidence does not support a recommendation for narratives to be a necessary component of PtDAs.

"Walking in Their Shoes": The effects of an immersive digital story intervention on empathy in nursing students.

AIM: To evaluate the effects of a novel, immersive digital story intervention on empathy. DESIGN: A randomized trial with three phases. RESULTS: A total of 238 2nd year nursing students were recruited between May 2018 and December 2019. At baseline, no significant differences in empathy between the groups were found (p = .760). However, at post-test, empathy was significantly higher in the intervention group (M: 118.76, SD: 10.65) than it was in the control group (M: 114.60, SD: 15.40) (p = .012). At follow-up, there were no significant differences in empathy between the groups (p = .364). CONCLUSION: The intervention resulted in an immediate increase in empathy in nursing students. However, further development of effective intervention delivery modes and fundamental redesign of the intervention itself would be needed to sustain this improvement over the long term.

Analyzing Patient Stories on Social Media Using Text Analytics.

Patients can use social media to describe their healthcare experiences. Several social media platforms, such as the Care Opinion platform, host large volumes of patient stories. However, the large number of these stories and the healthcare system's workload make exploring these stories a difficult task for healthcare providers and administrators. This study uses text mining for analyzing patient stories on the Care Opinion platform and exploring healthcare experiences described in these stories. We collected 367,573 stories, which were posted between September 2005 and September 2019. Topic modeling (Latent Dirichlet Allocation) and sentiment analysis were used to analyze the stories. Sixteen topics were identified representing five aspects of the healthcare experience: communication between patients and providers, quality of clinical services, quality of non-clinical services, human aspects of healthcare experiences, and patient satisfaction. There was also a clear sentiment in 99% of the stories. More than 55% of the stories that describe the patient's request for information, the patient's description of treatment, or the patient's making of an appointment had a negative sentiment, which represents patient dissatisfaction. The study provides insights into the content of patient stories and demonstrates how topic modeling and sentiment analysis can be used to analyze large volumes of patient stories and provide insights into these stories. The findings suggest that these stories are not general social media posts; instead, they describe elements of healthcare experiences that can be helpful for quality improvement. Supplementary Information: The online version contains supplementary material available at 10.1007/s41666-021-00097-5.

Medical Humanities: time to join the mainstream of medical education.

This article was migrated. The article was marked as recommended. Medical Humanities has grown in stature and scholarship in recent years. Much of the credit for this must go to academic humanists. Medical academics, with some notable exceptions, have not taken ownership of the discipline. The time has come for this to change. The medical humanities have so much to offer students in this era of patient centred healthcare that this imbalance must be addressed. It's time for medical humanities to move from the periphery of medical education to a central role in the undergraduate curriculum.

Stories of Hell and Healing: Internet Users' Construction of Benzodiazepine Distress and Withdrawal.

Benzodiazepines are a group of drugs used mainly as sedatives, hypnotics, antiepileptics, and muscle relaxants. Consumption is recommended for 2 to 4 weeks only, due to fast onset of dependency and potentially distressing withdrawal symptoms. Few peer-review studies have drawn on the user experiences and language to appreciate firsthand experiences of benzodiazepine withdrawal or discontinuation syndrome. We looked extensively at patient stories of benzodiazepine withdrawal and recovery on Internet support sites and YouTube. Our analysis indicated that users employ rich metaphors to portray the psychologically disturbing and protracted nature of their suffering. We identified seven major themes: hell and isolation, anxiety and depression, alienation, physical distress, anger and remorse, waves and windows, and healing and renewal. By posting success stories, ex-users make known that "healing" can be a long, unpredictable process, but distress does lessen, and recovery can happen.

Providing experiential information on early medical abortion: a qualitative evaluation of an animated personal account, Lara's Story.

BACKGROUND: An animated film has been created to provide information to women requesting early medical abortion (EMA). The 9 min film, Lara's Story, was created using one woman's personal account of her experience. This study evaluated the views of women who had recently undergone EMA on the film and its potential usefulness in providing experiential information to women requesting EMA. METHOD: Women who had undergone EMA within the past month were recruited. They were shown the film and interviewed in a semi-structured style. Interviews were recorded and transcribed verbatim. They were analysed using cross-sectional indexing and thematic analysis with an inductive approach. RESULTS: 13 women were interviewed. All reported that the film gave a realistic account of EMA and most agreed that they would have wanted to watch it before EMA had it been available. Some said that it might help women who were struggling with decision-making with regard to EMA and all said that there should be unrestricted access to the film from the website of the abortion service. The women commented that the animated style of the film allowed all groups of women to relate to the story. Some commented that Lara's experience of pain, bleeding and side effects such as nausea differed from their own and therefore felt that it would be useful to make more than one woman's account available. CONCLUSION: The availability of animated audiovisual films recounting women's experiences of EMA might be a valuable adjunct to clinical information for women seeking EMA.

Making sense of it: intensive care patients' phenomenological accounts of story construction.

BACKGROUND: Patients entering intensive care encounter physical and psychological stress that may lead to psychological morbidity such as depression, anxiety and post-traumatic stress. It has been suggested that constructing a story may assist psychological recovery. However, this has been minimally investigated in intensive care patients. AIM: The aim of this article is to examine the process of story construction in people's phenomenological accounts of being a patient in the technological environment of intensive care. STUDY DESIGN: The study design was informed by Heideggerian phenomenology. METHODS: Semi-structured interviews were conducted with 19 patients who had been in intensive care for at least 4 days. Interviews were digitally recorded, transcribed and analysed utilizing Van Manen's framework for thematic analysis. FINDINGS: Making sense of their experiences in an intensive care unit appeared to be fundamental to story construction. Themes that arose were 'why am I here?', 'filling in the gaps', 'sorting the real from the unreal' and 'searching for familiarity'. These themes describe how participants sought temporal and causal coherence in order to construct their integrated and understandable story. Families appeared to play a critical role in helping participants fill in the gaps, sorting the real from the unreal and their subsequent psychological recovery. CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: The importance of early support from health care professionals to facilitate patients' story construction is highlighted. The study also emphasizes the role families play in supporting patients while they make sense of their experiences and the associated psychological recovery process. Further research to evaluate methods of facilitating story construction, such as nurse-led debriefing and patient diaries, is recommended. In addition, an investigation of families' perceptions of their role in assisting patients construct their story may facilitate the development of strategies by health care professionals to effectively support families in their role.

Patient safety culture: finding meaning in patient experiences.

PURPOSE: The purpose of this paper is to determine what patient and family stories can tell us about patient safety culture within health care organizations and how patients experience patient safety culture. DESIGN/METHODOLOGY/APPROACH: A total of 11 patient and family stories of adverse event experiences were examined in September 2013 using publicly available videos on the Canadian Patient Safety Insitute web site. Videos were transcribed verbatim and collated as one complete data set. Thematic analysis was used to perform qualitative inquiry. All qualitative analysis was done using NVivo 10 software. FINDINGS: A total of three themes were identified: first, Being Passed Around; second, Not Having the Conversation; and third, the Person Behind the Patient. Results from this research also suggest that while health care organizations and providers might expect patients to play a larger role in managing their health, there may be underlying reasons as to why patients are not doing so. PRACTICAL IMPLICATIONS: The findings indicate that patient experiences and narratives are useful sources of information to better understand organizational safety culture and patient experiences of safety while hospitalized. Greater inclusion and analysis of patient safety narratives is important in understanding the needs of patients and how patient safety culture interventions can be improved to ensure translation of patient safety strategies at the frontlines of care. ORIGINALITY/VALUE: Greater acknowledgement of the patient and family experience provides organizations with an integral perspective to assist in defining and addressing deficiencies within their patient safety culture and to identify opportunities for improvement.

Patient stories: an innovative direction for nurses providing support to hematology patients in rural areas.

AIMS: This study set out to explore the attitudes toward a "Patient Stories" DVD as a psychosocial support initiative for patients diagnosed with a hematological malignancy. DESIGN: A qualitative research design was employed through a series of open-ended interviews and one focus group. PARTICIPANTS: Participants were purposively sampled from a database of patients maintained by the Leukaemia Foundation of Queensland. In total, there were 50 participants (n=26 male, n=24 female), which represented the following major hematological diagnostic groups: multiple myeloma (n=15), lymphoma (n=14), leukemia (n=17), and other (n=4). Of the overall cohort, 11 participants had undergone a bone marrow transplant, and 15 had undergone a stem cell transplant (allogeneic and autologous transplants). RESULTS AND CONCLUSION: Most participants believed that a "Patient Stories" DVD would be a beneficial and effective way for nurses delivering psychosocial support to hematology patients. Such benefits included a sense of normalization from hearing similar stories and providing convenient support that did not require travel or potentially uncomfortable social situations. However, some participants did not show interest in the idea for reasons such as already having a local support system and not wanting to watch potentially frightening stories.

Portrayals of lobotomy in American and Swedish media.

Psychosurgery has a long history dating back to the 1880s when Gottlieb Burckhardt performed focal cerebral cortical excisions on the brains of six patients diagnosed with schizophrenia. His operations were vividly contested by the medical community of the time. In 1936, when Walter J. Freeman and James W. Watts performed their initial prefrontal lobotomies in the United States, they were met with some professional opposition from superintendents, who would not provide them with patients for the operation. However, Freeman and Watts managed to cope well with the opponents. In newspapers and magazines, the curiosity for lobotomy was obvious. Freeman was instrumental in the way he promoted lobotomy, and he evoked the interest of the press and the journalists for this new surgical treatment on mental illness, something that he regarded as a medico-historical breakthrough. In this chapter, the portrayal of lobotomy in American and Swedish newspapers and magazines is explored and analyzed. How did journalists write about lobotomy for the public in the years spanning 1936 to 1959, a period in which the American and Swedish presses appeared inclined to describe the positive effects of lobotomy, while neglecting the negative and fatal consequences of the operation. There are not only similarities but also interesting differences between the Swedish and the American articles depicting lobotomy. The media can be a powerful factor in the construction of "facts," which can significantly affect decisions made by people about their health issues.