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The Illness Narratives: Suffering, Healing, and the Human Condition
... Religion, often seen as the structured counterpart to spirituality, provides a communal and organized way for people to practice their faith and share their beliefs. It is deeply intertwined with daily life, influencing everything from personal identity to societal norms and ethics (Kleinman, 1988). Through religious rituals, teachings, and practices, individuals find guidance, purpose, and community support. ...
... Additionally, religious rituals and communal support systems can help individuals cope with mental health challenges, offering hope, strength, and solace (World Health Organization [WHO], 2018). Conversely, beliefs in spiritual malevolence, such as curses or black magic, can have negative psychological effects, causing anxiety, paranoia, and psychosomatic illnesses (Kleinman, 1988). This demonstrates the powerful influence of belief systems on both mental and physical health. ...
... In many cultures where such beliefs are prevalent, individuals may feel vulnerable to spiritual harm, which can lead to heightened fear, anxiety, and even psychosomatic illnesses. This phenomenon is particularly common in regions where traditional or indigenous belief systems are still strong, and the fear of being cursed or spiritually attacked can contribute to real mental health issues (Kleinman, 1988). ...
This paper explores the intersection of spirituality, the astral body, tantra, religion, and mental and physical health, examining how these interconnected concepts influence and shape human experiences. Spirituality, a universal pursuit of meaning and connection with a higher power, is shown to enhance personal growth and emotional well-being. The concept of the astral body, prevalent in Eastern traditions, suggests the possibility of transcending the physical realm through out-of-body experiences, offering transformative insights into one's existence. Tantra, often misunderstood in the context of black magic, represents a complex spiritual practice aimed at achieving enlightenment through the union of opposing forces, though it can evoke fear due to its misinterpretation. Religion provides structured frameworks for practice and communal support, addressing existential questions and offering guidance through rituals and shared values. The paper also highlights the significant impact of spiritual beliefs on mental and physical health, illustrating how practices such as meditation and yoga contribute to stress reduction, emotional stability, and overall well-being. Conversely, beliefs in malevolent forces like black magic can negatively impact mental health, causing anxiety and psychosomatic symptoms. The integration of spiritual practices into modern healthcare reflects a growing recognition of the holistic nature of health, where mental, physical, and spiritual aspects are seen as interrelated. By understanding these belief systems, the paper aims to provide a comprehensive perspective on how spirituality, religion, and esoteric practices contribute to human resilience and well-being.
... Additionally, when early integrated palliative care (i.e., at the time of diagnosis) addresses coping practices, there is a lower risk of depression and a greater quality of life [12][13][14]. Indeed, adopting a holistic approach to patient care with chronic illness has been well documented in the literature [15,16]. Seminal works such as Kleinman's "The Illness narratives" focus on understanding illness through biological, cultural, and personal dimensions [16]. ...
... Indeed, adopting a holistic approach to patient care with chronic illness has been well documented in the literature [15,16]. Seminal works such as Kleinman's "The Illness narratives" focus on understanding illness through biological, cultural, and personal dimensions [16]. Kleinman's work highlights the multifaceted nature of illness and the limitations of solely considering the biomedical model in interventions and patient outcomes, advocating for a holistic approach to patient care [16]. ...
... Seminal works such as Kleinman's "The Illness narratives" focus on understanding illness through biological, cultural, and personal dimensions [16]. Kleinman's work highlights the multifaceted nature of illness and the limitations of solely considering the biomedical model in interventions and patient outcomes, advocating for a holistic approach to patient care [16]. However, scholarship indicates that the implementation of psychosocial interventions early in the trajectory of palliative care is less systematically developed compared to physical symptom control or advanced care planning [12,17]. ...
In this article, we share our findings on patients’ experiences creating digital stories about living with advanced cancer, represented through found poetry. Over a period of 12 months, patients from the program “Managing Cancer and Living Meaningfully” (CALM) completed digital stories about their experiences living with cancer. Digital stories are short, personalized videos that combine photographs, imagery, narration, and music to communicate a personal experience about a topic of inquiry. Patient interviews were conducted about the digital storytelling process. Found poetry guided the analysis technique. It is a form of arts-based research that involves using words and phrases found in interview transcripts to create poems that represent research themes. This article begins with a brief overview of the psychosocial intervention CALM, arts in healthcare, and found poetry, followed by the project background. The found poems represent themes of emotional impact, legacy making, and support and collaboration. Findings also indicate the inherently relational aspect of digital storytelling as participants emphasized the integral role of the digital storytelling facilitator. What follows is a discussion on digital storytelling, which considers the role of found poetry in representing patient voices in the research process.
... Los relatos de enfermedades crónicas o de larga duración son las que más han abordado esta cuestión (Canesqui, 2007 Lars-Christer Hydén (1997) se ha dedicado a indagar la dimensión de la narrativa de la experiencia de la enfermedad como una de las formas principales a partir de la cual percibimos, experimentamos y juzgamos nuestras acciones, el curso y el valor de nuestras vidas. Considerado uno de los mecanismos más poderosos para expresar el sufrimiento, Arthur Kleinman (1988) puso especial atención en el sufrimiento y concibió a la narrativa como el modo sustancial desde el cual dar voz al sufrimiento. Sin embargo, en los años 1990, autores como Frank (1995) criticaron esta centralidad del sufrimiento para introducir en la experiencia de la enfermedad los modos en que son concebidas y vividas. ...
... La noción de quiebre biográfico promovida en el estudio de Bury (1982) atiende a un momento específico, que sirve como soporte explicativo de los cambios y mutaciones que produce la experiencia de artritis reumatoidea, el estadio inicial de esta dolencia caracterizada como crónica, el lapso en que los sujetos -pacientes en su investigación-son derivados por primera vez a un ambulatorio: "El objetivo era concentrarse en pacientes con una dolencia emergente en el estadio más inicial posible, para explorar los problemas de reconocimiento y los cambios en las situaciones de la vida por el desarrollo de la enfermedad" (Bury, 1982: 41). Ello es importante para comprender algunas críticas ligadas al desconocimiento de momentos de "adaptación" o "ajuste" de la enfermedad, aspectos que fueron retomados y reformulados (Williams, 2000;Herzlich, 1973;Radley y Green, 1987;Kleinman, 1988). ...
... Arthur Kleinman (1988) recuperaba cómo la experiencia de la enfermedad forma parte de un intento por otorgar un marco o explicación significativa en un proceso que involucra la vida misma como horizonte más amplio. Gabriela (52 años) mencionaba: "Yo justo cuando empecé con esto me separé de mi pareja, con la que estábamos conviviendo. ...
This article is a theoretical-epistemic and methodological reflection on biographical forms within the framework of a research project focused on the transit through breast cancer of women living in the Metropolitan Area of Buenos Aires in the second decade of the 21st century. The question of the experience of illness led us to investigate the biographical and its heuristic potential in working with narratives for socio-anthropological studies of health. In order to do so, we focused on the process of interlocution with 25 women from popular and middle class sectors, between 26 and 75 years old. We emphasize the social dimension of all subjectivity, considering the dialogical and ethical nature of working with biographical forms. We also reflect on the process of narrative configuration in the research practice. For the empirical analysis, we recover the configurative-temporal capacity and the place of biographical rupture in the illness process. At the same time, we pay attention to aspects that participate and operate in the narrative process as an attempt to give an account of oneself: the moment in which the interlocution takes place in relation to the times and therapeutic instances of the illness; the horizons of expectations; the ways of thinking about the origin and/or causes of the diagnosis; and the place of the experience as a catalyst of other biographically significant events.
... These findings should not be extrapolated to older adults ( > 75 years) or individuals from other Latin American countries. Similar to other psychological and health challenges, experiences of loneliness and cognitive health may be shaped by age ( 20 , 21 ) and expressed through culturally and contextually congruent "idioms of distress", perceived causes, and treatments ( 44 ). ...
... Development of assessments that explore multiple clinical dimensions of loneliness and documentation of their psychometric properties are needed to ensure that research adequately captures loneliness among diverse groups of older adults in Latin America (e.g., race and ethnicity, language, sexual and gender minorities). This work should be developed with support from qualitative research to elucidate explanatory models of loneliness ( 44 ). Furthermore, these studies should consider the many contextual challenges faced by older adults and those living in Latin America (e.g., high rates of poverty, violence, and bereavement) ( 49 , 113 ) and draw on cultural and trauma-informed principles ( 114 ). ...
... Methodologically, this contribution is based on the collection of six illness stories through in-depth interviews with six patients suffering from different pancreatic clinical conditions. Illness stories, i.e. personal narratives of illness, are an essential tool in sociology and medicine for understanding how patients perceive and interpret their illness experiences (Bury, 1982;Charmaz, 1997;Kleinman, 1988). ...
... First, one of the main difficulties lies in the fact that, despite the efforts to engage and the potential empathy generated by visual narratives, the oppressive environment of marginality and vulnerability, which often accompanies the experience of illness, does not simply disappear through narration or participation. As pointed out by Kleinman (1988), illness is not only a biological event, but a totalising experience involving the individual's body, mind and social context. This implies that, in the process of creating a comic narrating the illness experience, patients are not only encouraged to tell their story, but also must decide how to represent it visually. ...
The comic biography of the pancreas presented in this project integrates narrative-based medicine (NBM) with graphic storytelling to explore the subjective experiences of patients with pancreatic diseases. By combining scientific and humanistic perspectives, the comic format captures the complexity of illness, illustrating not only the physical but also the emotional and social challenges faced by patients. Using in-depth interviews and an interdisciplinary approach, the project transforms personal illness stories into visually engaging narratives, promoting greater public awareness and empathetic understanding of pancreatic conditions. This method bridges the gap between medical knowledge and personal experiences, offering a more inclusive and multidimensional representation of the disease.
... Essa perspectiva sombria também impacta profundamente a mim e aos demais membros da família, incluindo irmãos, mãe, sogros, cunhados e sobrinhos. A conexão entre o câncer e a morte é um fenômeno amplamente difundido, e não é por acaso que autores como Kleinman (1988) e Kubler-Ross (1997), ao discutir questões ligadas à morte, frequentemente fazem referência a casos de câncer. Arthur Kleinman, em The Illness Narratives: Suffering, Healing, and the Human Condition, explora como a experiência do câncer oferece uma janela valiosa para compreender as narrativas individuais e culturais da doença. ...
... Arthur Kleinman, em The Illness Narratives: Suffering, Healing, and the Human Condition, explora como a experiência do câncer oferece uma janela valiosa para compreender as narrativas individuais e culturais da doença. Kleinman (1988) de vida dos pacientes com câncer é crucial para captar as complexas interações entre as experiências vividas e as expectativas culturais, revelando como o sofrimento e a doença são moldados tanto por fatores individuais quanto sociais. ...
Este artigo reflete sobre a experiência pessoal de acompanhar o adoecimento do meu esposo, manifestado com câncer metastático, e a maneira como a morte se tornou uma presença constante em nosso cotidiano. A partir dessa vivência íntima, investigo como a sociedade contemporânea ocidental lida com a morte e o processo de ressignificação da vida frente à iminência do fim. O diagnóstico trouxe à tona microviolências e isolamentos, exacerbados pelas restrições da pandemia de COVID-19, destacando como o câncer, enquanto doença cercada por estigmas, afetando não só o paciente, mas também seus familiares. A reflexão parte das hipóteses de que, embora os autores descrevam a morte como um tabu no Ocidente, essa perspectiva pode ser mais complexa, envolvendo tanto a negação quanto a exposição da morte. A análise recorreu a autores como Susan Sontag e Norbert Elias, que destacam o medo e a solidão ligada à morte e ao câncer, assim como Annemarie Mol ao exploram o papel da hegemonia biomédica, que, ao privilegiar intervenções tecnológicas e farmacológicas, muitas vezes desumaniza o paciente e ignora o impacto emocional e social da doença. O artigo explora a experiência da liminaridade em doenças terminais, especialmente o câncer, à luz da teoria dos ritos de passagem de Victor Turner. Na liminaridade, o indivíduo se encontra entre categorias sociais, sem estar completamente em uma ou fora, o que provoca uma reflexão profunda sobre o próprio papel na sociedade e os valores da vida. Nas doenças terminais, essa transição se intensifica, colocando o paciente e seus cuidadores em um estado de “viver-morrer”, onde a vida e a morte coexistem em tensão. Por fim o artigo aponta para o entendimento de que a morte não é o fim abrupto da vida, mas uma transição que nos obriga a revisitar nossos valores, nossas relações e nossos significados mais profundos.
... But there could be other explanations, such as the moment-the mood, time, day, or circumstances-in which he responded to the questionnaire, or the image of himself he wanted to present, whether in the questionnaire or in the association newsletter, which were aimed at different readers. In other words, the perceived difference between the reality of illness, in this case of disability, by health professionals or by patients, highlights how their explanatory models differ (Kleinman 1988), as well as their expectations of recovery. ...
... Again, we find a mismatch between individual body perception (disability reality) as functional and independent-she emphasizes this in capital letters-and the medical reality that she still needs continued care for the basic activities of daily living. Aside from the mismatch in explanatory models (Kleinman 1988), we must consider the lens through which we assess disability and recovery. If we only take a functional view and define recovery in terms of the activities persons with LIS can perform or if, through a social lens, we consider the conditions in the social environment that prevent or enable participation in society for persons with LIS. ...
... Additionally, the establishment of international training centers and partnerships between traditional and Western medical institutions plays a crucial role in the globalization process. These collaborations facilitate the standardization and formalization of traditional practices, ensuring that they meet the regulatory and educational standards required in different countries (Kleinman, 1988). For instance, the creation of training programs for PGBS practitioners in countries such as the United States and Japan has been instrumental in promoting the method's adoption and integration into local healthcare systems. ...
... Cultural brokers act as intermediaries who understand both the traditional and Western medical systems, enabling effective communication and collaboration. In the case of PGBS, cultural brokers could include experienced practitioners who have established international clinics, as well as academic institutions that offer research and training programs in PGBS techniques (Kleinman, 1988). Additionally, the adaptation of traditional practices to fit local healthcare frameworks without compromising their core principles is crucial. ...
This study investigates the cross-cultural dissemination of traditional medical practices in the globalized world, focusing on the Pingle Guo's Bone Setting Method (PGBS), a distinctive practice rooted in traditional Chinese medicine (TCM). Originating from Luoyang, China, PGBS has transcended cultural and geographical boundaries, gaining recognition in various international healthcare systems. Using a multi-method approach, including in-depth interviews, document analysis, and comparative case studies, this research examines the mechanisms of PGBS's internationalization. Key aspects explored include cultural adaptation, the role of cultural brokers, institutional collaboration, and the negotiation of medical paradigms. The study reveals that PGBS's success lies in balancing cultural authenticity with necessary adaptations to fit diverse healthcare systems, such as in the United States, Japan, and South Korea. Furthermore, it highlights challenges in the global dissemination of traditional practices, particularly regarding standardization, regulatory approval, and institutional recognition. The findings contribute to cross-cultural healthcare management by offering insights into how traditional knowledge can be integrated into global health systems. This research also provides valuable implications for policymakers, healthcare providers, and scholars interested in the future of traditional medicine in a globalized world.
... Con algunos puntos en común, pero con un enfoque diferente, Kleinman (1988) se ha ocupado de la narrativa médica, aludiendo al trabajo del profesional sanitario y la importancia de la narrativa de la enfermedad. Así, para el autor, "the interpretations of narratives of illness […] is core task in the work of doctoring" (p. ...
Las Medical/Health Humanities son un campo interdisciplinar en el que confluyen las Humanidades, las Ciencias Sociales y la Medicina. Con este enfoque, se pretende conocer y abordar la experiencia que tienen las personas con la salud, la enfermedad, la atención y la práctica médica en sí misma desde múltiples perspectivas. Algunas de las disciplinas que suelen integrarse en las Humanidades Médicas son la Filosofía, la Ética, la Literatura, la Historia, la Antropología, la Sociología y las Artes. Sin embargo, consideramos que existen otras materias que también forman parte de este ámbito, ya que contribuyen, no solo al entendimiento global de todas las cuestiones relacionadas con la salud, sino que profundizan en su transmisión y accesibilidad. En este sentido, cabe mencionar los proyectos existentes de humanización y alfabetización en salud, cuyo objetivo es el de humanizar los contextos sanitarios, así como otros proyectos que intervienen en la mejora de la atención al paciente y en su calidad de vida. Estos proyectos aúnan distintas disciplinas para ofrecer información clara, accesible y fiable y se convierten en una herramienta para la transmisión del conocimiento especializado y para la prevención e información sobre oncología. Para ello, la traducción tiene un papel fundamental al transferir, de forma adecuada y precisa, la información médica, utilizando un canal y un registro adaptado al receptor.
... While many scholars have expanded upon the understanding of the "sick role" to explain how individuals adapt to culturally prescribed roles during illness, others had engaged with social role theory even before Parsons (Burnham, 2012(Burnham, , 2014Frank, 2016). Additionally, some scholars, although not directly engaging with the "sick role" concept post-Parsons, have nonetheless explored the social roles of patients and healthcare professionals, and health behaviors (Hydén, 1997;Kleinman, 1980Kleinman, , 2020. Recently scholars illustrate that the "sick role" concept has seen a shift in its reception and interpretation within medical sociology and anthropology (Shilling, 2002;Varul, 2010). ...
... If kin believe or cocreate notions of stigma surrounding a disease, then the afflicted person is left especially vulnerable. Senegalese women's diabetic experiences complicate Rabinow's (1992) understanding of biosociality; similarly, these experiences also add nuance to Talcott Parsons (1951Parsons ( , 1975 and Arthur Kleinman's (1988) sick rolea social relationship seen as "motivational" or meant to garner empathy. Rather than garnering empathy, rumor and gossip isolate women, cutting them off from their social networks. ...
In Senegal, Type II diabetes often causes rapid weight loss. Weight loss is usually the reason women will finally seek out a biomedical diagnosis for their ailment. Loss of weight has many negative connotations for Senegalese women—HIV/AIDS, tuberculosis, financial troubles, or an unhappy marriage. When women lose weight, they become the subject of rumors and gossip in their communities. This leads to isolation. Research has shown that isolation has deleterious mental health effects, especially in places as communal as Senegal. Worsening mental health can also exacerbate diabetes. This article explores Senegalese women's experiences with weight loss due to Type II diabetes and the effects their weight loss, in addition to their diabetes, has on their lived experience and their social networks.
... Gallimore's framework helps to underscore that culture can be viewed within the architecture of how programs are designed and in how they operate and also serves as a reminder that cultural assumptions, beliefs, and values are often not consciously recognised or explicitly described. Kleinman's explanatory models of illness framework examines the cultural assumptions regarding the meaning of illness from multiple perspectives using key questions (Kleinman, 1981(Kleinman, , 1988Weiss, 1997). ...
The chapter features the research project ‘Artificial Intelligence for Assessment’ (AI FORA). AI FORA’s results will be presented in two volumes where this is the first one on the project’s empirical research. After a general introduction to the project, its topic, and its approach, two material sections follow, because their topics are central for AI FORA’s work. Section “The Pervasive Practice of Assessment and AI” will discuss the pervasive practice of social assessment in our societies which is more and more delegated to AI. Section “The Role of Culture and Context” will present existing cultural comparison approaches and evaluate their capacity to address the role of culture and context for AI-based social assessment in social service provision. Finally, the chapter will introduce the contributions of this book: Each chapter describes a unique cultural representation of context-specific social assessment practices to use AI for public social service provision in different national welfare systems.
... These cultural frameworks influence how groups perceive illness and approach healthcare, sometimes facilitating access to services but occasionally creating barriers (10,11). Arthur Kleinman's "explanatory model" highlights that each culture has its own ways of understanding health and illness, encompassing biological, social, spiritual, and moral dimensions (12). These beliefs are "embodied" in physical practices and expressions, making oral health a cultural expression. ...
M (2025) Cultural practices, oral health service utilisation and oral health policy and guidelines development in Africa: insights from the yorùbá ethnic group. Cultural beliefs and practices influence oral health behaviors in Africa, where traditions around health are deeply woven into daily life and community values. From the symbolism embedded in African art, belief in efficacy of herbs and natural elements, to the communal customs around oral hygiene, culture serves as a lens through which health beliefs and practices related to oral health are cultivated, understood and acted upon. This manuscript discusses rituals and embodied culture practices surrounding oral health among yorùbá, and links this discussion to the implications for oral health policies and interventions in Africa. Yorùbá is a prominent ethnic group in West Africa with oral traditional practices which reflect the community's emphasis on natural remedies, often reducing reliance on professional dental care. Through an analysis of oral health "rituals" embedded in yorùbá songs, proverbs, and Ifá divination poetry, this manuscript argues that cultural expressions reinforce the importance of oral health as a manifestation of spiritual balance and personal oral hygiene. Despite this cultural reverence, the manuscript finds that dental service utilization remains low among the yorùbá, with spiritual and traditional interpretations of oral health concerns often delaying professional intervention. It further suggests that integrating culturally resonant strategies into oral health policies could bridge gaps in service uptake. By analyzing these dynamics, the study offers a culturally informed perspective on oral health research and proposes policy frameworks that integrate indigenous and modern health approaches.
... Additionally, as medical students transition to clinical settings, they are exposed to diverse illness narratives that may challenge their preconceived notions and theoretical understanding of medical humanities. Arthur Kleinman's concept of "illness narratives" highlights the importance of understanding patients' subjective experiences and the stories they construct around their illnesses [44]. The dissonance between the idealized principles of empathy, patient-centeredness, and holistic care taught in classrooms and the complex realities of engaging with patients' illness narratives could contribute to the observed decline in medical humanities scores. ...
Background
The significance of issues in medical humanities, such as empathy, professionalism, patient-orientation, disclosure of harms, and communication skills, has been widely acknowledged in previous studies. While these studies have showcased the impact of individual facets of medical humanities on clinical practice, there exists a dearth of comprehensive assessments that encompass these constructs and their relationship with burnout and distress among medical students. This study aims to fill these gaps by exploring Chinese medical students’ overall perceptions of medical humanities across different educational phases and shedding light on the intricate associations between perceptions of humanities, burnout, and stress.
Methods
We conducted a nationwide survey using a web-based questionnaire across 38 Chinese universities. The questionnaire includes Medical Humanities constructs, the Maslach Burnout Inventory constructs and the Perceived Stress constructs. The survey was administered using the snowball sampling method, with the data collection period running from September 8, 2022, to September 22, 2023. Participants included a national sample of 904 students (out of a total of 969) enrolled in medical schools. To investigate the relationships among all the constructs, PLS-SEM analysis was conducted by using the SmartPLS 3.3.9 software in this study.
Results
The student’s perception of medical humanities was significantly influenced by several factors: years of medical school education (β = -.077; P = .045), work burnout (β = -.208; P < .001), and perceived stress (β = -.467; P < .001). Work burnout was impacted by clinical clerkship experience (β = .106; P = .001), whereas perceived stress was influenced by the number of years in medical school (β = 0.102; P = .002). Additionally, work burnout acts as an intermediate variable between clinical clerkship experience and students’ perception of medical humanities.
Conclusion
This study illuminated the complex relationship between medical education, burnout, stress, and students' perception of medical humanities issues. It underscores the critical importance of balancing technical proficiency with humanistic values in medical training. Implementing strategies that support students' well-being and foster empathy is essential in nurturing a compassionate and effective healthcare workforce.
... Human suffering often manifests in the shape of CCDs and is communicated through cultural idioms, which cannot be isolated from the broader context in which they emerge. Exploring CCDs is therefore key to comprehending the lived experience of individuals and communities (Hinton & Good, 2015;Hinton et al., 2019;Kleinman, 1988). ...
... In this approach, the focus is on how patients and providers interact and how models of illness and treatment are culturally constituted and situated (e.g., Calabrese, 2013;Fein, 2020;Good et al., 1985;Herdt, 1999;Luhrmann, 2011). In the other branch of clinical ethnography, clinicians do the ethnographic work of studying their own clinical experience directly while also situating cultural models of illness and treatment in the broader cultural context (e.g., Bromley, 2019;Hollan, 2023;Kalofonos, 2023;Kleinman, 1988;Lester, 2009Lester, , 2019. The articles in this special section bring out both the ethnographic richness of the examined clinical encounter as well as the close, embedded attention to the context of those encounters. ...
Psychologists need to engage diverse groups of people and use a mix of methods to attend to cultural contexts in order to understand the variety of human experiences and design meaningful interventions and policy recommendations. Ethnographic methods are central to this endeavor because they anchor people’s experience in local contexts, bringing out local meanings and increasing understanding of psychological phenomena, some of which can only be understood with reference to their cultural contexts. Ethnography is a crucial tool for psychologists who wish to understand diverse people, their lived experiences, and the contexts that influence them with systematic attention to the embeddedness of those experiences at various levels of cultural contexts—from everyday life and functioning to broader structural, political, and historical contexts. Ethnographic methods can help reduce cultural bias and move psychology away from reductionism. With the body of psychological research based on ethnographic methods increasing, it is timely to consider expanding training in methods in psychology to include ethnography.
... Globalization has made it easier for people to gain information, resources and modern mental health care that has made many people to be aware of depression and more options of treatment (Hickling, 2001). However, other factors in the context of modernization process like increased rate of urbanization, economic fluctuations, and deterioration of traditional family values have led to increased stress and mental health problems including depression (Kleinman, 2009). ...
Depression is a widely prevalent mental illness that cannot be reduced by cultural, societal, or even economic statuses of people. Probably for most of the past depression has been viewed from psychological and biomedical perspectives with a center on neurochemical disorders, negative thinking patterns, and lack of understanding of one’s mood. However, there is growing understanding that socio-cultural factors bear a great influence on the development of depression, its manifestation and management. The purpose of this research was to examine the cultural factors in depressive disorders with an assessment of how culture shapes depression with particular reference to social culture, organization, and history and to examine the difference between individualist and collectivist cultures in relation to depression and its treatment aims to capture how different cultures underpin depression. The study was qualitative only in the broad sense of the term since it is cross-cultural, comparative, and based on in-depth interviews, focus group discussions and case studies, which provided ample qualitative information from a range of individuals diagnosed with depression across cultures. Similarly, mental health care professionals in various organizations of different ethnicities were engaged to share culturally appropriate approaches for tackling issues and managing the clients. Content analysis was used in order to compare and contrast the data collected by identifying for patterns, trends and differences of subjects’ experience with regard to symptoms portrayed, the coping strategies utilized and social support they have, and mental health services available to them. The participants completed questionnaires as well as engaged in the semi-structured interviews to compare and contrast their experiences of depression and its treatment in individualistic societies where people do not seek help because the problem is a personal issue to people of collectivism societies where depression is viewed in the context of relationships. In conclusion, this research is intended to provide information for the improvement and development of other non-western modes of intervention for the mental health care in the global level. The study incorporated interviews with people of different cultures, and thus it helps in providing a broader outlook to depression as well as how to enhance mental health in a culturally dominating world. The study aims to advocate for the use of culturally relevant treatment plans especially in the areas of mental health to improve the quality of the overall solutions offered in the globe.
... One traditional framework for conceptualizing these problems is to view them as a collision of two discourses, which Mishler terms "the voice of medicine" and "the voice of the lifeworld" (Mishler, 1984). These two voices echo Kleinman's (1988) distinction between disease and illness: illness is a subjective experience embedded in a patient's life situation, encompassing changes in behavioral patterns and interpersonal relationships, whereas disease is the reconstruction of illness through medical theory as an anatomical or biological abnormality that is disconnected from its social context. The phenomenology of illness has extensively explored the lived experience of illness. ...
The concept of epistemic injustice provides a theoretical framework for considering the ethical issues arising in interpersonal communication. This article proposes the concept of implicational injustice as a novel type of epistemic injustice. An implicature is a message that a speaker does not explicitly state, but that is implicitly communicated by an utterance. Since the speaker does not explicitly state the implicature, it may be overlooked by the hearer. This oversight of implicature is likely to occur when the hearer prematurely terminates the search for relevance or when there is informational inequality between speaker and hearer. If premature termination or information inequality is caused by the hearer’s prejudice against the speaker or by the undue ignorance of the speaker, the oversight of implicature is deemed an implicational injustice. This article offers several examples of the oversight of implicature and implicational injustice in doctor-patient communication in which patients’ attempts to convey psychosocial messages to their physicians are often overlooked. Implicational injustice can be considered as a novel subtype of epistemic injustice that differs from other subtypes, such as silencing, testimonial injustice, and interpretative injustice. Implicational injustice prevents the sufferer’s full participation in epistemic collaboration and can inflict secondary harm, such as negative effects on clinical decision making.
... However, a stigma begins with the acceptance of a stigmatized identity caused by the reaction of family, friends, and caregivers to one's condition (Kleinman, 1988). Caregivers sometimes assign ill people a discredited identity that differs substantially from their earlier self-image (Coyle, 1999). ...
Chronic fatigue syndrome and fibromyalgia are characterized by being difficult to diagnose and having an elusive etiology and no clear-cut treatment strategy. The question of whether these illnesses are stigmatizing was investigated through interviews with 25 women with these illnesses. The women experienced stigmatization primarily before receiving a diagnosis, and the diffuse symptomatology associated with the illnesses were significant for stigmatization. Stigma consisted of questioning the veracity, morality, and accuracy of patient symptom descriptions and of psychologizingsymptoms. Coping with stigma was also explored and found to comprise both withdrawal and approach strategies, depending on the individual’s circumstances and goals.
... A desinformação por profissionais da saúde acerca destas enfermidades, a falta de padronização no cuidado e no fluxo dos pacientes na rede de assistência à saúde, assim como a carência de experiências pregressas na condução dos casos pelos profissionais são algumas das lacunas a serem solucionadas (Brasil, 2022;Félix et al., 2022). Kleinman (1988), é compreender as crenças culturalmente originadas que os pacientes têm sobre a doença. Isto ajuda os profissionais a organizarem as estratégias de abordagem clínica, auxiliando os pacientes e as famílias a fazerem escolhas nos tratamentos a serem efetuados, melhorando, assim, os resultados. ...
Erros inatos da imunidade (EII) são causados por alterações na imunidade, expressas por infecções, alergias, neoplasias, manifestações autoimunes e inflamatórias. A ocorrência mundial aproxima-se de 1:1200, sendo no Brasil ainda desconhecida. Os EII formam um grupo heterogêneo de 485 doenças, algumas ultrarraras e outras, mais frequentes. Objetivos: Analisar as trajetórias das pessoas com EII em busca do diagnóstico e tratamento na rede de assistência à saúde até um hospital universitário, abordar as alternativas do cuidado e os impactos na família. Métodos: Pesquisa qualitativa, descritiva e exploratória, onde foram realizadas entrevistas gravadas abordando pessoas com EII em um hospital universitário. As narrativas foram interpretadas pela análise de conteúdo e baseadas nos referenciais teóricos: Itinerários Terapêuticos e EII. Resultados: Dos 7 pacientes, quatro eram homens e três eram mulheres, a idade ao diagnóstico variou de 6,9 a 30 anos. As narrativas evidenciaram 4 categorias temáticas: “os desafios em conviver com sintomas”, destacando-se a tosse; “a busca do cuidado na rede de assistência saúde”, revelando atraso no diagnóstico entre 6 a 29 anos; “as alternativas do cuidado” marcadas pela espiritualidade e “os impactos da doença na família” resultando em instabilidade emocional e financeira. Os pacientes relataram várias infecções, sendo mais frequentes as sinusites e pneumonias. Conclusão: As trajetórias das pessoas com EII revelaram vários acessos ao sistema de saúde, sucessivas internações, cuidado inadequado e diagnóstico tardio. Esses achados podem contribuir para alertar os profissionais de saúde em suspeitar dos EII, favorecendo o diagnóstico e o tratamento precoces.
... I'm very impressed by what you said. I would like to emphasise that in clinical practice, rather than with "diseases", doctors are confronted with "people" who are suffering from a disease, as Kleinman (1988) pointed out a long time ago. This is particularly true for patients who develops a SID, as, for example, a systemic lupus erythematosus (SLE). ...
Chronic illness is a major challenge for both patients and clinicians since their prolonged and sometimes unpredictable evolution threatens patient's quality of life and, at the same time, defies clinician's expertise and self-confidence (WHO, 2013, 2023). Thus, to better cope with it, patients and doctors should learn to work together. Yet, hidden defence mechanisms and concealed emotions often represent a major obstacle to communication and collaboration (Oliveira et al., 2012; de Vries, 2019; Despland et al., 2009). This intriguing, yet debated topic is discussed here by two experts who spent their life in the arena chronic disease from two different yet complementary perspectives: a veteran hospital practitioner with a prolonged clinical practice in chronic immunological diseases and TPE, and a professor of Pedagogy, who interlaced her academic work with a singular personal history of chronic illness. Abstract: Le malattie croniche rappresentano una sfida importante sia per i pazienti che per i medici, poiché la loro lunga e talvolta imprevedibile evoluzione nel tempo minaccia la qualità di vita del paziente e, allo stesso tempo, sfida la competenza e la fiducia in sé stesso del medico (OMS, 2013, 2023). Pertanto, per affrontarla al meglio, pazienti e medici dovrebbero imparare a lavorare insieme. Tuttavia, i meccanismi di difesa nascosti e le emozioni spesso non espresse rappresentano un grosso ostacolo alla comunicazione e alla collaborazione (Oliveira et al., 2012; de Vries, 2019; Despland et al., 2009). Questo tema complesso e molto attuale viene qui discusso da due esperti che hanno trascorso la loro vita ad affrontare la malattia cronica da due prospettive diverse ma complementari: un medico ospedaliero con una lunga pratica clinica alle spalle nelle malattie immunologiche croniche e nella TPE, e una docente di Pedagogia che ha intrecciato il suo lavoro accademico con una singolare storia personale di malattia cronica.
... A direct cause of stigma is the challenge to a person's sense of belonging, dignity and credibility due to disbelief of signs and symptoms (Werner and Malterud 2003). Patients who do not receive adequate medical attention, are not listened to or are continuously doubted experience a sense of exclusion that violates their dignity (Kleinman 1988). ...
Aim
To review the qualitative literature regarding how people with fibromyalgia experience and are impacted by stigma.
Design
A systematic review and metasynthesis of qualitative studies was conducted following the Thomas and Harden method.
Methods
The electronic databases PubMed, CINAHL, PsycInfo, Embase and Scopus were queried (September 2023). No publication year limit was set. Twelve studies were included in the final analysis. The findings were reported according to the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement.
Findings
Three main themes with 11 sub‐themes were identified: manifestations and roots of stigma, avoidance and coping strategies, and consequences of stigma. Stigma arises from disbelief due to the invisibility of symptoms, protracted time to diagnosis and gender stereotyping, especially against women. Various strategies to avoid or cope with prejudice may involve social isolation, hiding the disease, controlling information, getting closer to or further away from other patients, acknowledging and understanding the disease. Stigmatisation can diminish a person's integrity and dignity, undermine trust in health care professionals and worsen suffering.
Conclusion
The metasynthesis findings align with previous research highlighting the pervasive stigma associated with chronic pain conditions. Greater awareness of the impact of disease‐related stigma on individuals with fibromyalgia is crucial, not only among health care professionals but also within broader societal and institutional contexts.
Implications for the Profession and/or Patient Care
Understanding the stigma experienced by individuals with fibromyalgia can guide health care professionals in adopting more empathtic approaches, potentially improving the diagnostic process and the overall management of the condition.
Impact
This study highlights the profound impact of stigma on individuals with fibromyalgia, emphasising the need for greater awareness and targeted interventions to address stigma in clinical practice and societal contexts.
Patient or Public Contribution
No patient or public contribution.
... By means of narrative, we either consciously or unconsciously structure events to create meaning in what happens around us-and to us (Bruner, 1991;Labov & Waletzky, 1997). People who become seriously ill may experience life becoming interrupted by the event of illness (Kleinman, 2017). The narrative that was once familiar may suddenly lose its coherence, and the world may no longer feel like a safe place to be. ...
Purpose
When serious illness occurs, effective communication is essential but challenged by language barriers. This study explores how patients with limited Danish proficiency and their families experience language barriers during cancer care in two Danish public hospitals.
Method
Adopting a phenomenological-hermeneutic approach, the study stresses narratives in understanding participants’ lived experiences. Accordingly, nine qualitative, semi-structured interviews were conducted with 17 informants, including nine patients and eight relatives. The interviews were audio-recorded and transcribed verbatim.
Results
Based on analysis, three themes were identified: 1) A history of pain behind the language barrier; 2) Linguistic pain—a feeling of being trapped in mother tongue; and 3) Barriers and pathways to linguistic safety. The findings reveal that painful stories were not only brought into the hospital but continued there. Painful feelings associated with being unable to communicate directly with the healthcare professionals seemed inescapable, but continuity of empathetic care providers, including professional interpreters, increased the well-being of both patients and family members.
Conclusion
Language barriers not only make patients more susceptible to misunderstandings and medical errors but amplify experiences of pain during cancer care. The generated knowledge from this study emphasizes language as a foundational element in advancing more equitable cancer care.
... For example, in the medical field, some have argued that the increasing specialization of physicians has led to a fragmented and dehumanized approach to patient care, where individuals are treated as a collection of isolated symptoms rather than as whole persons with complex social, emotional, and spiritual needs (Kleinman, 1988). Similarly, in the legal field, some have raised concerns that the increasing specialization of lawyers has led to a narrow focus on technical expertise at the expense of broader social justice and ethical considerations (Boon, 2010). ...
This monograph explores the evolution of professional organizations, identities, and specialization, examining the historical trajectory, key drivers, challenges, and future implications of these interrelated processes. The work traces the shift from generalist occupational collectives to increasingly specialized professional identities and organizations, driven by factors such as the codification of knowledge, societal demands, technological advancements, and governmental interventions. It highlights strategies used by professions like medicine, law, and engineering to balance unity and specialization. The monograph also critically examines issues of professional ethics, social responsibility, and the need for greater diversity, equity, and inclusion in professional identity formation. Looking ahead, the work discusses how hyper-specialization presents both risks of fragmentation and opportunities for innovation, and calls for professional organizations to embrace interdisciplinary collaboration, public engagement, and a commitment to addressing complex global challenges. Ultimately, the monograph argues for a more expansive, socially responsive vision for the professions, and outlines educational and institutional reforms needed to support this evolution. The work represents an important synthesis of research on professional identity formation and specialization, and offers valuable insights for educators, organizational leaders, and professionals navigating the complex landscape of 21st century practice.
... Textele literare se pot utiliza ca instrument didactic de sensibilizare a studenților mediciniști. Kleinman (1988) analizează ceea ce el numește narațiunea bolii și constată că boala are mai multe tipuri de semnificație: convențională (simptomul ca handicap sau suferință), culturală, socială și personală. Hawkins (1984) Analiza narativă a textului de nutriție oncologică Analiza narativă a elementelor unui text poate identifica anumite perspective și valori ale discursului. ...
Citation
Atomei O. A Narrative Analysis of Oncological Nutrition Text. Boldea I (ed.). Journal of Romanian Literary Studies. Vol. 15. Târgu Mureș: Arhipelag XXI Press. 2018;522-525. (E-ISSN: 2248-3004) https://doi.org/10.5281/zenodo.14609498
Most non-literary texts discussing cancer may contain narrative elements and can be evaluated as narratives. We analyzed an educational nutrition brochure for patients with cancer. The narrative analysis can identify certain discourse perspectives and values. We identified some characteristics of narrative writing, including themes, characters and events. The narrator is the health professional (the voice of medical science), the main character (the hero) is the oncology patient, the bad character is cancer, and helper and donor characters are the doctor and dietician, diet and food nutrients. Sometimes cancer means fight for life. The human body can be seen as both a character and a narrative space.
... Social support is general or specific supportive behaviour from others that enhances an individual's social adjustment and provides protection from adverse circumstances 19 . Actually, depression is closely associated with "social institutions, social suffering, and social relationships" 20 . Consequently, factors such as the institutional culture of the doctoral program, the challenges faced by students, their interactions with others, and the support they receive during their training these process-related factors are tied to their high risk of depression. ...
The phenomenon that the depression risk among doctoral students is higher than that of other groups should not be ignored. Despite this, studies specifically addressing depression risk in doctoral students are relatively scarce, and existing findings are not universally applicable. Using neural network feature extraction technology, this study aims to investigate the factors contributing to the high depression risk of doctoral students and effectively identify doctoral students at depression risk, so as to propose corresponding improvement strategies to prevent and intervene doctoral students with depression risk for universities. Based on the data from the 2019 Nature Global Doctoral Student Survey, we first screened 13 highly relevant features from a total of 37 features potentially related to the risk of depression among doctoral students by Random Forest algorithm. Subsequently, we trained the optimal prediction model to predict the doctoral students with depression risk using a Multilayer Perceptron (MLP), achieving an accuracy of 89.09% on the test set. Additionally, this study constructed a group portrait of doctoral students at risk of depression, and found that overwork, poor work-life balance, and poor supervisor-student relationship, etc., were typical characteristics among these students. Finally, we proposed several improvement strategies for higher education institutions. Our research offers a new perspective on utilising artificial intelligence (AI) methods to tackle educational challenges, particularly in the identification and support of doctoral students at risk of depression, thereby enhancing their mental health.
Language plays a pivotal role in medicine, influencing clinical decision-making, patient perceptions, and healthcare outcomes. Cognitive linguistics and psychology provide crucial insights into how linguistic framing, biases, and communication strategies impact medical practice. The framing effect, cognitive biases such as anchoring and confirmation bias, and the psychological implications of medical terminology significantly alter both physician and patient decision-making. Additionally, effective doctor-patient communication fosters trust and improves treatment adherence, while language barriers can lead to miscommunication, medical errors, and anxiety. Narrative medicine, which emphasizes patient storytelling, enhances diagnostic accuracy and empathetic care by allowing physicians to understand the full context of an illness. Furthermore, advancements in artificial intelligence (AI) and natural language processing (NLP) are transforming medical communication, providing real-time translation and personalized linguistic adaptations. However, human interaction remains irreplaceable in fostering trust and ensuring ethical and compassionate healthcare delivery. Future perspectives in medical linguistics involve AI-driven linguistic tools, personalized communication strategies based on psychological profiling, and expanded use of narrative medicine to enhance patient engagement. By integrating cognitive linguistics, psychology, and technology, healthcare professionals can refine communication approaches, mitigate biases, and ultimately improve patient care. Understanding the intricate relationship between language and cognition will enable a more patient-centered, inclusive, and effective healthcare system.
The metanarrative of biomedicine and “psy” discipline (psychology, psychoanalysis, psychiatry etc.) asserts that cannabis use is one of the fundamental causes of mental illness among different men in the Rushinga district of Zimbabwe. These metanarratives, however, appear to have universalised, medicalised and marginalised the conception and representation of mental illness as enmeshed in local epistemologies and ontologies of mental illness. Based on local epistemologies, elders in Diwa largely trace mental illness to discursive sociocultural explanations rarely linked to cannabis use. This paper answers the central question: How is the use of cannabis by different persons related to mental illness in the Rushinga district? I argue that community members, health providers and police officers want to think of persons, especially men, with mental illness as “mad” and immoral cannabis users who brought illnesses upon themselves and lack personal responsibility based on Western neoliberal and biomedical metanarratives. However, this framing is not helpful, it is detrimental to treatment and social reputation, as it bypasses local cultural explanations that may be protective and that offer clearer guidelines for treatment.
The risks associated with divided identities among Yoruba-speaking communities in Southwestern Nigeria highlight the complex interplay between culture and perceptions of mental illness. In the context of Yoruba communities in Southwestern Nigeria, the concept of divided identities plays a significant role in shaping perceptions and attitudes towards mental illness. The socio-cultural fabric of these communities is deeply intertwined with traditional beliefs, religious practices, and social norms that can contribute to the stigmatization of individuals suffering from mental health issues. Understanding this phenomenon requires an exploration of how cultural identity influences mental health perceptions and the implications for those affected. Using a qualitative research design, this study explores this phenomenon of Stigmatization of Mental Illness Victims due to Cultural Beliefs and Mental Health Perceptions, Impact on Help-Seeking Behavior, Social Consequences and Identity Division and Efforts towards Reducing the Stigma. This study reveals that individuals experiencing symptoms of mental illness is viewed as being fixated or cursed, leading to social ostracism. This stigmatization result in families hiding their mentally ill members due to fear of societal judgment, which further exacerbates the isolation and suffering experienced by these individuals. In conclusion the paper emphasized that stigmatization not only affects individual well-being but also disrupts family relationships and community cohesion. The study recommends that addressing these challenges requires multi-faceted approaches that incorporate education, advocacy, and community engagement concerted efforts aimed at fostering understanding and acceptance while respecting cultural context.
Organisational healing (OH), as an existing theoretical concept developed by Powley et al., refers to the process of repairing and restoring the social relationships of an organisation after any external trauma. In this study, we aim to expand the nature and application of OH by exploring additional areas of applicability. We examine the critical assumptions in the existing conceptualisation of OH and propose modifications and additions, which help make OH a more robust construct. Finally, we identify the theoretical and managerial implications of this study and discuss future research implications.
Open access article: https://www.sciencedirect.com/science/article/pii/S0970389625000035
Background:
Dimensione Sollievo (Dimension of Relief) and its Facebook page represent a patient-centered social media initiative focused on chronic pain. This platform provides users with accurate resources on chronic pain and offers a virtual space for peer interaction - a crucial aspect for a condition often lacking proper recognition. The study's primary objective was to analyze the content in relation to unmet needs, with a secondary objective to explore the role of narrative medicine (NM) in this form of social communication.
Methods:
Posts, replies, and comments from the Facebook page between 2020 and 2023 were analyzed using thematic frameworks such as Frank, Kleinmann, Launer classifications, and Berne's transactional analysis. Language styles, semantics, word frequency, and metaphors were also examined. Narratives were analyzed through Nvivo software and Microsoft Office tools.
Results:
Users embraced the Facebook page as a safe space for interaction, where they found understanding and connection, unlike their experiences outside the community. While interactions were generally brief, they intensified around issues where users perceived injustices, such as the lack of recognition of their condition by medical professionals and family, and challenges in accessing benefits. Thematic analysis revealed that the most prominent theme was the dimension of disease, with many narratives expressing difficulty coping and a lack of progress.
Conclusions:
The application of narrative medicine (NM) tools highlights both explicit and unconscious patient needs, such as the desire to be heard and acknowledged. This study is the first to explore NM's potential in chronic pain. Implementing NM tools through informed moderation could transform pain management culture, improving treatment approaches and enhancing the overall community experience.
This lecture is about the relation between the linguistic dimension of the human sciences, in particular the cognitive role of figurative language, with a focus on metaphor and narrative, and the related methods of conceptual analysis and discourse analysis.
Chronic Kidney Disease of undiagnosed etiology (CKDu) has emerged as a significant public health concern in rural Sri Lanka, particularly in the North Central Province. This study explores the social implications of CKDu, focusing on its impact on socialization among affected individuals in the Sudarsangama area, Anuradhapura. Employing a mixed-methods approach, data were collected through surveys, in-depth interviews, and focus group discussions with CKDu patients, their families, and community members. Findings reveal that CKDu exacerbates social isolation due to physical limitations, stigma, and financial burdens. Patients often withdraw from community activities, diminishing their social capital and altering traditional support networks. The study highlights the intersection of health and social vulnerability, underscoring the need for targeted interventions that address the psychosocial aspects of CKDu. Enhancing social inclusion and community engagement can mitigate the broader social impacts of the disease, fostering resilience among affected populations.
A partir de la obra pictórica del pintor uruguayo José Cuneo Perinetti (1887-1977), nos iremos acercando a la vida y praxis del médico uruguayo Hugo Dibarboure Icasuriaga (1929-2015), quien empezó su caminar mientas el pintor hacía sus lunas sobre Florida. Desde un abordaje que tendrá en cuenta la perspectiva antroplógica, mezclada con aportes históricos, reflexiones filosóficas y experiencia práctica asistencial, analizaremos el aporte de Hugo a la medicina familiar y comunitaria, descubriendo en él a un médico-docente que, sigue dejando su huella por el transitar de la salud comunitaria nacional.
Good communication is necessary for good clinical care, but defining good communication has been surprisingly difficult and controversial. Many current ideas that identify good communication with certain communication behaviours, or 'skills', were ethically inspired to help doctors see beyond disease to the whole patient. However, promoting specific behaviours is problematic because communication is contextually dependent. In recent decades, observational research into practitioner-patient relationships has begun to provide a scientific basis for the field, identifying patients' vulnerability and practitioners' authority as defining features of fundamentally asymmetric clinical relationships. Future educators can learn from research that explores the judgments that experienced practitioners make when they manage communication dilemmas arising from this asymmetry. In future, instead of the current emphasis on teaching communication behaviours, educators could provide practitioners with knowledge about relationships to inform those judgments, while addressing the attitudes and values that motivate and guide their communication.
Objective
This study aimed to expand the understanding of the patient with psoriatic arthritis (PsA) experience and to compare/contrast patient and clinician prioritization of PsA dimensions.
Methods
We conducted four patients with PsA focus groups across three US rheumatology practices using mixed methods to identify attributes of PsA important to patients. Combination with extant attributes of PsA identified by a steering committee created a comprehensive list of attributes. In separate patient and physician Delphi exercises, participants distributed 100 points across items on the list according to importance as a dimension of PsA.
Results
Fifty‐one items describing PsA were generated. Thirty‐eight patients and 13 clinicians completed the last Delphi rating exercise. Patients distributed points across a wider range of items than physicians. Using group mean score per item, prioritization was compared between groups. Items with the top 10 mean scores for both groups included arthritis, disease activity, pain, fatigue, physical function, and spine symptoms. Other prioritized domains showed disparity: access to care, daily activities, stiffness, future health uncertainty, and sleep quality for patients versus specific disease skin and joint manifestations, comorbidities, structural damage, and disease management goals for clinicians.
Conclusion
Although concordance between patient and clinician perspectives regarding “what matters” in PsA was seen, significant areas of discordance were uncovered. Patients highlighted concerns about care access and uncertainty about the future and impact on aspects of life beyond physical symptoms, issues not usually discussed in a clinical visit. These differential prioritizations highlight opportunities for improvement in patient–clinician communications and delineate the need for more patient‐centered research.
Life-writing on breast cancer vindicates women’s health rights, but, as this article demonstrates, the autopathographies Cancer Journals (1980) by Audre Lordeand Cancer Vixen (2006) by Marisa Marchetto also have the potential to teach lessons to (future) health professionals and scholars in literary studies, so that they can, respectively, improve their interactions with patients and understand the therapeutic power of illness narratives to emotionally heal their authors and intended female readers. Lorde uses the weapon of anger both to criticize how cancer patients are dehumanized by the often-insensitive medical profession and to proudly assert her post-mastectomy identity as a one-breasted warrior.Meanwhile, Marchetto opts for humor to describe her eleven-month war against breast cancer and its associated complications: her lack of health insurance to treat her illness and her fear of losing her fiancé. Yet, as this article examines, Cancer Vixen shows the illuminating power of graphic medicine as a breakthrough narrative form, to mitigate the antagonism between doctors and cancer patients, while enhancing literary scholars’ and health professionals’ empathic understanding of patients’ personal stories of illness beyond clinical and hospitalencounters.
ResearchGate has not been able to resolve any references for this publication.