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Objectives: Forced migration and its subsequent sequelae have caused refugees to face significant adversities throughout the displacement process, making them susceptible to significant health issues. Refugees displaced in Africa are a group especially vulnerable to poor health outcomes, experiencing a documented decline in overall physical and mental health status and rise in mortality from non-communicable diseases (NCDs). Despite the heightened health risks experienced by Somali refugees, particularly women, research into their complex illness experiences and co-/multimorbid health conditions is scarce, leaving a gap in our understanding of the multifaceted health challenges of this population. Design: Using structural vulnerability theory, this study explores how the broader host context shapes illness experiences for Somali refugee women in Kenya. Specifically, we describe the factors associated with illness experiences of urban Somali refugee women and how this compares with women with other similarly situated identities, such as Somali Kenyan women, other/non-Somali refugees, and Kenyan women. In-depth interviews were conducted with 43 women in Eastleigh, Kenya. Results: Using hybrid thematic analysis, the emergent themes were grouped into three distinct domains: (1) multimorbid, complex illness experiences, (2) embodiment of structural vulnerability, and (3) distinct/shared vulnerability among refugee/non-refugee women. Results suggest that illness experiences of displaced refugee women are inextricably linked to traumatic experiences before displacement, as well as the experiences of transmigration stressors and the hostile socio-legal dynamics encountered post-displacement. Conclusions: Our findings also have implications for the need to consider intersectional identities when examining for differential exposure to structural risks and the susceptibility to poor health experiences as well as supports the need for urgent change and improvement in systems of social protection and basic care for refugees experiencing prolonged displacement. [ABSTRACT FROM AUTHOR]

The illness experiences of advanced cancer patients are discussed in a Taiwanese cultural context, using an interpretive ethnographic approach (interviews and participant observations) emphasizing holism and symbolic interactionism. A total of 23 advanced cancer patients from different counties in Taiwan were recruited over a 42-month period. The researcher followed their progress as they approached death to better understand their terminal cancer experiences. An interpretive analysis guided by Agar's hermeneutic cycle approach revealed five emic dimensions: feeling the oppression of death, fighting alongside family, intensifying bodily healing efforts, settling unfinished business, and ending the struggle to control pain. Implications for caregivers are discussed. [ABSTRACT FROM AUTHOR]

Medical sociologists have much to gain by bringing in global health. In this article, I make the case for expanding our field by furthering sociological perspectives on global health. I reflect on my career, the influence of scholar-activist mentors, and my contributions to the development of scholarship about medicalization, narrative, and global health in medical sociology. First, I focus on medicalization, its relationship to biomedicalization and pharmaceuticalization, and critiques of the medicalization of global health. Second, I analyze the narrative turn in studies of illness experiences and the inclusion of visual materials as an integral part of narrative studies of illness. Third, I explore global health and show examples of bodies of knowledge that medical sociologists are building. Although I present each as a distinct area, my discussion illustrates how the three areas are intertwined and how my contributions to each traverse and build connections among them. [ABSTRACT FROM AUTHOR]

Background In the face of the serious challenges posed by the high prevalence of chronic diseases among the elderly and the coexistence of multiple chronic diseases, the health problems of community-dwelling elderly people' with multimorbidity require urgent attention. The comorbidity management model is being explored and practiced. Disease experience, as self-reported health information from patients, is expected to become a key component of the patient-centered community multimorbidity management model. Objective This study aimed to gain a deeper understanding of the real disease experience of community-dwelling elderly people with multimorbidity and provide a basis for personalized health management and supportive strategies of the group. Methods This study used purposive sampling and maximum difference sampling to select eligible interviewees from four communities under the jurisdiction of a community health service center in Zhengzhou City from August to September in 2022. Based on the principle of information saturation, 20 subjects were ultimately included. Based on the research objective, literature review, and expert consultation results, the preliminary interview outline was formulated, and the final interview outline was determined after interviewing 2 patients. Semi-structured interviews were conducted with the study participants, guided by the phenomenological research methodology. Golaizzi analysis was used to analyse the data. Results Four themes and eleven sub-themes had been extracted from this study, including mainly long-standing symptomatic distress (physical dysfunction, fatigue, sleep disorders, and pain), negative psychological experiences (feelings of helplessness and worry about future life, reduced sense of social value and self-identity, and loneliness with altered social activities), positive mindset of coexisting harmoniously with multimorbidity (being grateful for being satisfied, and positively adapting), and aspirations in times of adversity (hoping for improvement in functioning, and seeking multi-directional social support) . Conclusion Physical dysfunction, sleep disturbances, fatigue, and pain are the most concerning health disturbances for community-dwelling elderly people with multimorbidity. The symptom management and multiple social support of the multimorbidity need to be strengthened. In the future, it is expected that multidimensional data would be used for dynamic health assessment to explore the common and individual patterns of multimorbidity, and to achieve precise management and intervention of elderly multimorbidity in the community.

Objective: This study explores the process through which informal caregivers, particularly spouses, construct their identity within the context of caregiving for individuals with dementia. Despite extensive research in psychology aimed at defining caregiving (e.g. tasks, consequences), few informal caregivers identify themselves as such. For instance, the affective bond shared between caregivers and care‐recipients often imbues caregiving responsibilities with a sense of "naturalness," especially if the care‐recipient is a spouse. Methods: To investigate the nature of caregiver identity construction, eight semi‐structured interviews were conducted with spouse caregivers of dementia patients. The collected data underwent interpretative phenomenological analysis (IPA). Results: Three interconnected themes emerged from the analysis: (1) Perceiving changes in my partner, which involves recognising alterations in the care‐receiver's characteristics due to dementia; (2) Processing changes, encompassing the experience of grieving losses and reminiscing about the past; and (3) Perceiving changes in myself, referring to the acknowledgement of personal changes due to caregiving. Conclusion: The study emphasises the dynamic and ongoing nature of caregiver identity construction, which begins with the early recognition of changes in the care‐receiver. Interestingly, spouse caregivers oscillate between their identity as a spouse and caregiver, influenced by how they process changes undergone by their partner. Contrasting with previous theories on caregivers' identity, our results focus of caregivers' perceptions rather than their relationship with the care‐recipient or caregiving tasks. [ABSTRACT FROM AUTHOR]

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

Background/Objectives: Sjögren's Syndrome (SS) is a chronic degenerative rheumatic disease. Because of its chronic nature, it significantly affects the quality of life of those who suffer from it. Methods: This qualitative study investigated disease experience among women suffering from SS to understand its impact on their overall well-being. In-depth interviews were conducted with 15 women who suffer from SS. Interviews were analyzed using the Grounded Theory methodology, using open, axial, and selective coding. Results: Three central phenomena of disease experience were identified: invisibility; uncontrollability; and unpredictability. Conclusions: SS disease experience has a strong imprint on emotional well-being and sense of self-control among middle-aged women. Understanding SS impacts on women's lives is important to better understand the disease and contribute to recognizing potential areas of management and social support in relevant windows of opportunity within the health-disease continuum. [ABSTRACT FROM AUTHOR]

Background: International students have a lower utilization rate of the local medical service system for studying abroad, and it has been found that there may be multiple reasons behind this phenomenon. This study explores the usage of medical service systems by international students and the underlying logical factors through a study of the usage of National Health Service (NHS) of Chinese students in the UK. Methods: To address the research questions, this study employed an online survey methodology that ran between 1st May and August 20, 2019 facing the Chinese students in the UK. A total of 1,050 questionnaires were distributed and 1,001 questionnaires were recovered, of which 977 contained valid responses (questionnaire response rate was 95.3 % and validity rate was 97.6 %). Before the questionnaire was designed and after it was issued, two focus group interviews were conducted to provide reliable and detailed information to inform the questionnaire design and to supplement the questionnaire survey data with more profound psychological qualitative data. The two focus groups consisted of 10 and 12 Chinese students studying in the UK and each lasted more than 3 h. Results: The survey data showed that the medical services utilization rate of Chinese students in the UK is relatively low compared to UK residents and domestic Chinese students. Their decisions and behaviours around medical services usage in the UK are not significantly related to age, gender, and monthly income, but are instead related to their current education status, types of disease suffered, and information acquisition about the UK medical services before coming to the UK. When getting sick, in addition to seeking help from official medical services, Chinese students studying in the UK tend to self-diagnose and self-medicate; seeking help from social networks based on friendship and domestic relatives are also alternatives to accessing medical services. Conclusion: Combining the theories of ‘sick role’ and ‘illness experience’, the decisions and behaviours related to medical services usage by Chinese students in the UK are significantly influenced by their understanding of medical services, which is socially and culturally learned in China. Understanding the perspective of the ‘sick role’ and the ‘illness experience’ of Chinese students may help to better think about how improvements can be made to their utilization rate of medical services and their health status during their studies in the UK. This study not only provides us with specific information and understanding on the usage of medical services for Chinese students in the UK, but the research results may also provide a reference for other similar research on the health and medical service use of other international students studying in the cross-cultural contexts.

As a crosscutting concept in biology, anthropology, and philosophy, immunity has been a critical ‘site’ of debate on the relations between self and other, organism and environment, risk and responsibility, the corporeal and the political. In this Research Article, I trace how these relations and everyday life during the COVID-19 pandemic relied on a web of coordinated—and sometimes unexpected—lines of communication, restriction, and solidarity. Using an experimental approach that combines multimodal autoethnography and multiscalar relational analysis, I present a first-person account of travelling during, testing for, and falling ill and isolating with COVID-19 in late 2021. I explore how pandemic life-lines, including public health measures, vaccinations, devices, and helplines, as well as mundane gestures of care and ecologies of support, acted together as shared immunities. In this exploration, I propose to reconceptualise ‘immunity’ as a process network rather than a defence apparatus, shedding light on how these life-lines may influence differential trajectories of disease and healing. To conclude, I discuss how my conceptual and methodological approach contributes to a social ecological understanding of immunity, that goes beyond the biopolitical, in times of pandemic and in the future.

Background: This research aimed to investigate the experience of Neuromyelitis Optica Spectrum Disorders (NMOSD) by integrating the perspectives of patients, caregivers and clinicians through narrative-based medicine to provide new insights to improve care relationships. Methods: The research was conducted in the second half of 2022 and involved six Italian centres treating NMOSD and targeted adult patients, their caregivers and healthcare providers to collect the three points of view of living with or caring for this rare disease, still difficult to treat despite the pharmacological options. Narratives followed a structured outline according to the time: yesterday-today-tomorrow, to capture all disease phases. Results: Twenty-five patients diagnosed with NMOSD, ten caregivers and 13 healthcare providers participated in the research. Patients reported symptoms limiting their daily activities and strongly impacting their social dimension. We noticed improvements across disease duration, whilst the persistence of limitations was recurrent in patients with longer diagnoses. Caregivers' narratives mainly share experiences of their daily life changes, the burden of the caregiving role and the solutions identified, if any. Healthcare providers defined their role as a guide. Conclusion: Limitations in activities are prominent in the lives of people with NMOSD, along with fatigue. Family members are the weakest link in the chain and need information and support. Healthcare professionals are attentive to the helping dimension. [ABSTRACT FROM AUTHOR]

Background: An increased risk of contracting HIV infection, suboptimal adherence, and a loss to follow-up have been observed in migrants, particularly if those individuals are transgender or sex workers. A clear picture of the HIV epidemic among migrants is complex due to the lack of specific national data. Aims: We developed a qualitative study that describes the barriers and facilitators (cultural, social, and personal) in HIV testing and the continuum of care for a group of migrant transgender women who are sex workers. Methods: A semi-structured interview was conducted with a group of migrant transgender women who are sex workers living with HIV or with unknown HIV serostatus residing in the Florentine metropolitan area. Results: We included 12 participants: 3 had unknown HIV serostatus and 9 were living with HIV in follow-up at the Clinic of Infectious and Tropical Diseases, Careggi University hospiral, Florence, Italy. Among barriers, the perceived stigma due to their identity as migrants and transgender people, the language lack of ability and the legal position in the host country played a significant role. Moreover, the interviewees claimed having no alternative to sex work: for those individuals, changing their lifestyle condition is perceived as difficult or impossible due to social prejudices. Conversely, the interviewees considered support services, such as cultural mediators/interpreters and street units, as facilitators to HIV testing, access to care, and continuum of care. Having regular and accessible ART and the availability of a more consistent health care system, represent reasons for HIV-positive migrants living with HIV to move to Italy. Conclusions: Knowledge of this population’s personal experience regarding the barriers and factors that facilitate access to the HIV care system is essential for planning public health interventions capable of responding to the real needs of patients. [ABSTRACT FROM AUTHOR]

Sociologists have a rich history of studying the process of diagnosis and how people experience illness. Yet, the sociology of diagnosis and illness experience literatures have seldom been fully integrated. Instead, these literatures highlight one element of the illness journey, wherein scholars either primarily study diagnostic processes and categories or people's illness experiences. Drawing on empirical studies that examine diagnosis and experiences of illness in varied settings (diagnosis during breast cancer surveillance, diagnosis and experience of autoimmune illness and incarcerated women's experiences of diagnoses and illness), in this article we build on our concept of regimes of patienthood to explain how diagnostic journeys, and the relations and power dynamics that manifest during this time, shape the illness experience and practices of patienthood. We construct a classification of diagnostic processes grounded in our empirical research that span (1) sudden diagnoses, (2) long, changing diagnostic journeys and (3) diagnostic journeys marked by disbelief and denial of care. Our findings demonstrate how diagnostic journeys and illness experiences are intertwined, with different diagnostic pathways impacting how illness is experienced. Analysing these categories collectively demonstrates that diagnostic journeys, while heterogenous, shape the practices that patients develop to manage health conditions and navigate unequal health‐care encounters. [ABSTRACT FROM AUTHOR]

Neurology holds a unique perspective that embodies the art of capturing a patient's story. Despite medical advancements, many neurological conditions leave patients permanently impaired. This sudden loss of independence can be demoralizing and, in most cases, directly changes a person's identity. It is therefore a necessary part of a neurologist's trade to know their patient's history—their story. Their tales reveal intimate details of their personality changes, memory loss, sensory deprivation, and movement disorders. A true neurologist is a person that remains vulnerable through their willingness to take a history—the story of their patient—and remain curious, vulnerable, and compassionate through their journey to heal and comfort the patient. To understand the patient's illness experience in neurology, the underlying themes of patient recovery (compassion, determination, and patience) are explored with regard to the neurological patient's experience. These themes are then expanded to include the neurology patient's mental perceptions of themselves, and their illness' influences over their identity, recovery, and daily life. In addition to the patient's experience, the neurologist's awareness and emotional response to the patient's illness experience can provide an opportunity to develop a strong therapeutic bond with their patient and improve patient outcomes. Given that their neurological impairment causes a loss of independence and control over their identity and self-worth, neurologists can incorporate the patient's experience into their management and treatment, to better address their emotional and spiritual needs as they come to terms with their identity. [ABSTRACT FROM AUTHOR]

Simple Summary: Many Lyme disease patients are struggling to navigate a healthcare system that increasingly dismisses their condition. Patient organizations have arisen to contest a healthcare system that dismisses patient conditions and to help bridge the divide between patients, researchers, healthcare systems, and policymakers. This study documents this experience to reveal the marginal progress made to date and the complexity of the challenges that remain. Lyme disease patient organizations have formed to challenge a health system that is failing Canadians who suffer from a disease that is ambiguous in its symptomology and trajectory. The framework of an embodied health movement illustrates the importance of the illness experience in mobilizing patients to oppose a system that is reliant on restrictive guidelines that deny testing and treatment and to seek alliances with researchers, physicians, and politicians who are sympathetic to their goals. The strategies of Lyme disease patient organizations, the importance of experiential knowledge, and the roles of both adversaries and allies are examined through a "small wins" approach to gauge successes and setbacks within a Canadian context. [ABSTRACT FROM AUTHOR]

This article investigates the complex ways that social conditions and illness experiences interact with cancer in a marginalised population. Drawing on the theoretical framework of syndemics, we explore how people living in circumstances of homelessness and severe substance use in Denmark experience and manage their cancer illness. We draw upon qualitative, partly longitudinal, interviews with marginalised people with current or previous cancer illness. Participants suffered from a wide range of physical and mental conditions alongside their cancer illness and substance use. Adverse interactions between these conditions delayed, complicated, or hindered both the cancer diagnosis and the cancer treatment of participants. Surprisingly, for some, the cancer diagnosis also contributed to temporary periods of stability. Nevertheless, disadvantaged social conditions of chaotic, unwanted housing conditions, fragile social relations and social isolation worked to aggravate participants' cancer trajectories and general life situation. Participants' cancer experiences were cases of syndemic suffering that took on a distinct direction in which cancer created cyclical rounds of suffering due to the many late effects of the illness and treatment. The article demonstrates how marginalised people’s cancer experiences are inextricably linked to, and shaped by, the social and health inequities characterising their lives.

Lyme disease patient organizations have formed to challenge a health system that is failing Canadians who suffer from a disease that is ambiguous in its symptomology and trajectory. The framework of an embodied health movement illustrates the importance of the illness experience in mobilizing patients to oppose a system that is reliant on restrictive guidelines that deny testing and treatment and to seek alliances with researchers, physicians, and politicians who are sympathetic to their goals. The strategies of Lyme disease patient organizations, the importance of experiential knowledge, and the roles of both adversaries and allies are examined through a “small wins” approach to gauge successes and setbacks within a Canadian context.

Many women diagnosed with breast cancer today can expect to live long after completing their treatment. This growing population of survivors encounters distinct post-treatment health and information needs. Existing survivorship care models take information as a given, black boxing it. I use Actor-Network Theory to examine how information actually works for women after they complete breast cancer treatment, and how it shapes their understanding of survivorship. I draw on in-depth interviews with breast cancer survivors (n = 82) and a wide range of providers (n = 84) in a medically underserved region of Southern California. Black boxes and information pathways convey experiential dimensions of cancer care; they are also metaphoric constructs. The black box metaphor refers to the cancer experience as a container; the pathways metaphor refers to a journey. Each of these metaphors expresses salient dimensions of the cancer experience and has implications for post-treatment survivorship. When healthcare information flows smoothly and invisibly, its pathways become black boxed. Black boxes can be helpful when they function effectively. But since black boxes conceal their inner workings, it is challenging to intervene when difficulties arise. I provide three examples of difficulties that complicate womens transition to post-treatment survivorship: (1) when survivors fail to recognize treatment-related late effects, (2) do not understand they have a terminal diagnosis, or (3) worry that their treatment accomplished nothing. Contextualized within survivorship scholarship, this study recommends opening black boxes to examine how information pathways could connect women differently to improve survivorship care.

Background: The experience of cardiovascular diseases affects various physical, psychological, social and existential aspects of the patient. But, after studying the research background, it was found that Each of the conducted studies have studied only one of these dimensions. Therefore, the absence of a research that examines all the mentioned components in relation to each other is a sign of the existence of a scientific gap in this field. Aims: The present research was conducted with the aim of studying the "disease experience" in people suffering from cardiovascular diseases. Methods: In this qualitative research, interpretive phenomenological method was used. Sampling was done using the purposeful sampling method and in order to collect data, a semi-structured interview based on the axes proposed by Spradley (2016) was conducted individually with 16 cardiovascular patients. The data were analyzed based on the 6-step strategy of Smith, Larkin and Flowers (2021) and using MAXQDA-2020 software. Results: From the analysis of the findings, the central category of "Disease-caused Transformations" was identified, which includes five main categories of phenomenal body, agency barrier, communication interference, difficult emotional experiences, and existential challenges. Conclusion: According to the obtained results, it can be said that cardiovascular diseases cause profound changes in various aspects of the patients' personal and social life. Using the categories identified in the current research can be a guide for specialists to evaluate that In which of the categories of "pathological changes" does the cardiovascular patient have more serious problems and as a result, it can help specialists in designing and implementing interventions according to the same category.

Background A relapsing and remitting illness, long COVID can be challenging and debilitating. A person living with long COVID can feel like they are getting better and recovering only to relapse again. The aim of the research was to explore how non-hospitalized middle-aged women who contracted COVID in the first wave of the pandemic, from March 2020, are manag-ing their long COVID symptoms. Participants and procedure A qualitative research study with an interpretative phenomenological analysis approach was used to explore how the wom-en made sense of managing their condition and health seeking behaviours. Participants were recruited from long COVID Facebook groups and semi-structured interviews were conducted remotely by Teams audio; these were digitally recorded and transcribed by hand with prior informed consent. Nine women were interviewed and four themes and eight sub-themes emerged from the data. Results The four emerging themes were: inequality and inconsistent medical treatment; uncertainty and ambiguity of managing long COVID symptoms; managing other people’s expectations and perceptions of long COVID; and the changing identity. Overall, these results indicated a general mistrust in health care services to provide adequate support and individualized treatment plans leading women to self-advocacy and to seek alternative support and treatment. Conclusions This study raised questions about the possible unfair treatment of women seeking medical attention for their long COVID symptoms; how ambiguous symptoms are misattributed to anxiety and discrimination from health care professionals con-tributes towards stigma. The study concludes with recommendations for service improvement such as the compassionate validation of patients’ pain and the use of evidence-based therapeutic practices such as mindfulness.

The stories of patients [1] appear in the international scientific press, whether produced by doctors themselves affected by the disease, directly by patients, or transcribed by journalists, anthropologists or sociologists. After his experience of his blindness, his childhood years, his adolescence, his denial of the difficulties faced with his ambition to become a teacher, then his outlook on reality, Jean Paul Channel evokes in this part 7 his years of "opulence". [ABSTRACT FROM AUTHOR]

The stories of patients [1] appear in the international scientific press, whether produced by doctors themselves affected by the disease, directly by patients, or transcribed by journalists, anthropologists or sociologists. After his experience of his blindness, his childhood years, his adolescence, his denial of the difficulties faced with his ambition to become a teacher, then his outlook on reality, Jean-Paul Channel evokes in this 6th part his withdrawal towards specialized education. [ABSTRACT FROM AUTHOR]

Long-term conditions and accompanied co-morbidities now affect about a quarter of the UK population. Enabling patients and caregivers to communicate their experience of illness in their own words is vital to developing a shared understanding of the condition and its impact on patients’ and caregivers’ lives and in delivering person-centred care. Studies of patient language show how metaphors provide insight into the physical and emotional world of the patient, but such studies are often limited by their focus on a single illness. The authors of this study undertook a secondary qualitative data analysis of 25 interviews, comparing the metaphors used by patients and parents of patients with five longterm conditions. Analysis shows how similar metaphors can be used in empowering and disempowering ways as patients strive to accept illness in their daily lives and how metaphor use depends on the manifestation, diagnosis, and treatment of individual conditions. The study concludes with implications for how metaphorical expressions can be attended to by healthcare professionals as part of shared care planning.

Background: The experience of cardiovascular diseases affects various physical, psychological, social and existential aspects of the patient. But, after studying the research background, it was found that Each of the conducted studies have studied only one of these dimensions. Therefore, the absence of a research that examines all the mentioned components in relation to each other is a sign of the existence of a scientific gap in this field. Aims: The present research was conducted with the aim of studying the "disease experience" in people suffering from cardiovascular diseases. Methods: In this qualitative research, interpretive phenomenological method was used. Sampling was done using the purposeful sampling method and in order to collect data, a semi -structured interview based on the axes proposed by Spradley (2016) was conducted individually with 16 cardiovascular patients. The data were analyzed based on the 6 -step strategy of Smith, Larkin and Flowers (2021) and using MAXQDA -2020 software. Results: From the analysis of the findings, the central category of "Disease -caused Transformations" was identified, which includes five main categories of phenomenal body, agency barrier, communication interference, difficult emotional experiences, and existential challenges. Conclusion: According to the obtained results, it can be said that cardiovascular diseases cause profound changes in various aspects of the patients' personal and social life. Using the categories identified in the current research can be a guide for specialists to evaluate that In which of the categories of "pathological changes" does the cardiovascular patient have more serious problems and as a result, it can help specialists in designing and implementing interventions according to the same category. [ABSTRACT FROM AUTHOR]

This issue of Transcultural Psychiatry presents selected papers from the McGill Advanced Study Institute on "Cultural Poetics of Illness and Healing." The meeting addressed the cognitive science of language, metaphor, and poiesis from embodied and enactivist perspectives; how cultural affordances, background knowledge, discourse, and practices enable and constrain poiesis; the cognitive and social poetics of symptom and illness experience; and the politics and practice of poetics in healing ritual, psychotherapy, and recovery. This introductory essay outlines an approach to illness experience and its transformation in healing practices that emphasizes embodied processes of metaphor as well as the social processes of self-construal and positioning through material and discursive engagements with the cultural affordances that constitute our local worlds. The approach has implications for theory building, training, and clinical practice in psychiatry. [ABSTRACT FROM AUTHOR]

background A relapsing and remitting illness, long COVID can be challenging and debilitating. A person living with long COVID can feel like they are getting better and recovering only to relapse again. The aim of the research was to explore how non-hospitalized middle-aged women who contracted COVID in the first wave of the pandemic, from March 2020, are managing their long COVID symptoms. PARTICIPANTS AND PROCEDURE A qualitative research study with an interpretative phenomenological analysis approach was used to explore how the women made sense of managing their condition and health seeking behaviours. Participants were recruited from long COVID Facebook groups and semi-structured interviews were conducted remotely by Teams audio; these were digitally recorded and transcribed by hand with prior informed consent. Nine women were interviewed and four themes and eight sub-themes emerged from the data. RESULTS The four emerging themes were: inequality and inconsistent medical treatment; uncertainty and ambiguity of managing long COVID symptoms; managing other people's expectations and perceptions of long COVID; and the changing identity. Overall, these results indicated a general mistrust in health care services to provide adequate support and individualized treatment plans leading women to self-advocacy and to seek alternative support and treatment. CONCLUSIONS This study raised questions about the possible unfair treatment of women seeking medical attention for their long COVID symptoms; how ambiguous symptoms are misattributed to anxiety and discrimination from health care professionals contributes towards stigma. The study concludes with recommendations for service improvement such as the compassionate validation of patients' pain and the use of evidence-based therapeutic practices such as mindfulness. [ABSTRACT FROM AUTHOR]

The article investigates the concept of self-illness ambiguity (SIA), which was recently re-introduced in the philosophy of psychiatry literature. SIA refers to situations in which patients are uncertain about whether features (symptoms, signs) of their illness should be attributed to their illness or to their 'selves'. Identification of these features belongs to a more encompassing process of self- definition and -interpretation. The paper introduces a distinction between the notions of self-relatedness, self-referentiality (or: implicit self-signification), self-awareness and self-interpretation. Each of these notions offers a different perspective on SIA, but these perspectives do not exclude one another. A further distinction will be developed between primary, secondary and tertiary forms of self-referentiality. The practical and conceptual relevance of these distinctions will be illustrated with case vignettes. Throughout the paper our findings will placed in the context of other philosophical work on the self, especially in the field of narrative theory (Ricoeur), phenomenology (Ratcliffe) and philosophy of mind. The article closes with a brief discussion about the appropriateness of the term ambiguity and the potential of SIA as concept in the context of clinical psychiatry. Directions for future work will be indicated. [ABSTRACT FROM AUTHOR]

Long COVID is a novel chronic illness with a variety of symptoms that people who have labelled themselves 'long‐haulers' experience for an extended duration following a COVID‐19 infection. We draw on in‐depth interviews conducted in March–April 2021 with 20 working‐aged adults in the U.S. who self‐identified as long‐haulers to understand the consequences for identities. The results demonstrate that Long COVID has important consequences for identities and sense of self. Long‐haulers described experiencing three stages of biographical disruptions: realising their illness experience as misaligned with sense of self and embodied, age‐based expectations; facing challenges to identities and changes in social roles; and reconciling illness and identity in the context of an uncertain prognosis. It remains unclear how long‐haulers will resolve biographical disruptions and identity conflicts, especially as scientific insights about this novel condition emerge. Such outcomes may depend largely on whether Long COVID remains a contested illness or medical knowledge progresses to improve their quality of life. For now, healthcare providers may approach Long COVID holistically to address the identity disruptions that long‐haulers face as they manage the consequences of this chronic illness. [ABSTRACT FROM AUTHOR]

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The stories of patients [1] appear in the international scientific press, whether produced by doctors themselves affected by the disease, directly by patients, or transcribed by journalists, anthropologists or sociologists. After his experience of his blindness, his childhood years, his adolescence, his denial of the difficulties faced with his ambition to become a teacher, then his outlook on reality and his beautiful years of visual enjoyment Jean-Paul Channel evokes in this 8th part the painful loss of precious baggage. [ABSTRACT FROM AUTHOR]

The stories of patients [1] appear in the international scientific press, whether produced by doctors themselves affected by the disease, directly by patients, or transcribed by journalists, anthropologists or sociologists. This moving account, delivered without commentary, segmented and barely reconfigured for editorial reasons, is a diary confided by Jean-Paul Chanel, written in 2016, about his experience of being visually impaired. As Aimé Césaire pleaded for Négritude, the strength of being a black writer, the Deaf during the "Deaf Awakening" spoke of Surditude, Jean-Paul Chanel leads us towards his Blindpride [2]. [ABSTRACT FROM AUTHOR]

Based on data produced through digital ethnography, we analyze how the interaction in a Brazilian blog allowed the production of subjectivities and agency services mediated by biomedical scientific practices directed to HIV/AIDS. The narratives highlighted scientific dissemination, sharing of information and experiences as elements in the processes of normalization and enhancement of life with HIV/AIDS. In addition, the study unveiled the access and sharing of biomedical and scientific information on the blog as a facilitator in the production and development of expert patients and the pharmaceuticalization of life as a consequence of the experience of living with HIV/AIDS. [ABSTRACT FROM AUTHOR]

ObjectivesAlthough the vast majority of COVID-19 cases are treated in primary care, patients' experiences during home isolation have been little studied. This study aimed to explore the experiences of patients with acute COVID-19 and to identify challenges after the initial adaptation of the German health system to the pandemic (after first infection wave from February to June 2020).MethodsA mixed-method convergent design was used to gain a holistic insight into patients experience. The study consisted of a cross-sectional survey, open survey answers and semi-structured telephone interviews. Descriptive analysis was performed on quantitative survey answers. Between group differences were calculated to explore changes after the first infection wave. Qualitative thematic analysis was conducted on open survey answers and interviews. The results were then compared within a triangulation protocol.ResultsA total of 1100 participants from all German states were recruited by 145 general practitioners from August 2020 to April 2021, 42 additionally took part in qualitative interviews. Disease onset varied from February 2020 to April 2021. After the first infection wave, more participants were tested positive during the acute disease (88.8%; 95.2%; P < 0.001). Waiting times for tests (mean 4.5 days, SD 4.1; 2.7days, SD 2.6, P < 0.001) and test results (mean 2.4 days, SD 1.9; 1.8 days, SD 1.3, P < 0.001) decreased. Qualitative results indicated that the availability of repeated testing and antigen tests reduced insecurities, transmission and related guilt. Although personal consultations at general practices increased (6.8%; 15.5%, P < 0.001), telephone consultation remained the main mode of consultation (78.5%) and video remained insignificant (1.9%). The course of disease, the living situation and social surroundings during isolation, access to health care, personal resilience, spirituality and feelings of guilt and worries emerged as themes influencing the illness experience. Challenges were contact management and adequate provision of care during home isolation. A constant contact person within the health system helped against feelings of care deprivation, uncertainty and fear.ConclusionsOur study highlights that home isolation of individuals with COVID-19 requires a holistic approach that considers all aspects of patient care and effective coordination between different care providers.

The stories of patients [1] appear in the international scientific press, whether produced by doctors themselves affected by the disease, directly by patients, or transcribed by journalists, anthropologists or sociologists. This moving account, delivered without commentary, segmented and barely reconfigured for editorial reasons, is a diary confided by Jean-Paul Chanel, written in 2016, about his experience of being visually impaired. As Aimé Césaire pleaded for Négritude, the strength of being a black writer, the Deaf during the "Deaf Awakening" spoke of Surditude, Jean-Paul Chanel leads us towards his Blindpride [2]. [ABSTRACT FROM AUTHOR]

Doctors and patients rely on verbal and nonverbal resources to co-construct clinical empathy. In language-discordant consultations, interpreters' communicative actions might compromise this process. We aim to explore doctors, patients, and professional interpreters' perspectives on their own and others' actions during their empathic interaction in interpreter-mediated consultations (IMCs). We analyzed 20 video stimulated recall interviews with doctors, patients, and interpreters using qualitative content analysis. Doctors and patients found ways to connect with each other on the level of empathic communication (EC) that is not limited by interpreters' alterations or disengaged demeanor. Some aspects of doctors and interpreters' professional practices might jeopardize the co-construction of EC in IMCs. The co-construction of EC in IMCs is not only subject to participants' communicative (inter)actions, but also to organizational and subjective factors. These results provide evidence of the transactional process between the behavioral, cognitive, and affective components of clinical empathy in the context of IMCs. [ABSTRACT FROM AUTHOR]

Background: Summary statistics often hide individual patients' suffering, thereby impeding quality improvement efforts. Objectives: We aimed to show the experience of a population with health care toward the end of life while preserving the experience of the individual. Design: We developed a data display method called per-patient illness trajectory analysis. We tested it using a demonstration cohort of 192 patients with cancer referred to a regional Swedish specialized home-based palliative care practice. Chart review provided detailed information about illness trajectory events with a focus on unplanned hospitalization. Results: We created per-patient timelines spanning from cancer diagnosis until death and using a logarithmic scale: Compared with a conventional, linear timescale, this scale expands the time resolution toward the end of life. The method fosters the assessment of unmet palliative care need and care quality for individuals, small high-need groups, and populations. Conclusion: In populations of up to 200 people, per-patient illness trajectory analysis is feasible and promising. Using random sampling, it could be extended to larger populations.

Background: International students have a lower utilization rate of the local medical service system for studying abroad, and it has been found that there may be multiple reasons behind this phenomenon. This study explores the usage of medical service systems by international students and the underlying logical factors through a study of the usage of National Health Service (NHS) of Chinese students in the UK., Methods: To address the research questions, this study employed an online survey methodology that ran between 1st May and August 20, 2019 facing the Chinese students in the UK. A total of 1,050 questionnaires were distributed and 1,001 questionnaires were recovered, of which 977 contained valid responses (questionnaire response rate was 95.3 % and validity rate was 97.6 %). Before the questionnaire was designed and after it was issued, two focus group interviews were conducted to provide reliable and detailed information to inform the questionnaire design and to supplement the questionnaire survey data with more profound psychological qualitative data. The two focus groups consisted of 10 and 12 Chinese students studying in the UK and each lasted more than 3 h., Results: The survey data showed that the medical services utilization rate of Chinese students in the UK is relatively low compared to UK residents and domestic Chinese students. Their decisions and behaviours around medical services usage in the UK are not significantly related to age, gender, and monthly income, but are instead related to their current education status, types of disease suffered, and information acquisition about the UK medical services before coming to the UK. When getting sick, in addition to seeking help from official medical services, Chinese students studying in the UK tend to self-diagnose and self-medicate; seeking help from social networks based on friendship and domestic relatives are also alternatives to accessing medical services., Conclusion: Combining the theories of 'sick role' and 'illness experience', the decisions and behaviours related to medical services usage by Chinese students in the UK are significantly influenced by their understanding of medical services, which is socially and culturally learned in China. Understanding the perspective of the 'sick role' and the 'illness experience' of Chinese students may help to better think about how improvements can be made to their utilization rate of medical services and their health status during their studies in the UK. This study not only provides us with specific information and understanding on the usage of medical services for Chinese students in the UK, but the research results may also provide a reference for other similar research on the health and medical service use of other international students studying in the cross-cultural contexts., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2024 The Authors.)

For the Miskitu of Nicaragua, Grisi Siknis is a contagious illness that predominantly affects women. It is characterized by numerous psychosomatic symptoms, including headache, fear, aggressive behavior, loss of consciousness, and periods of rapid frenzy. Although Grisi Siknis has gained academic and public attention due to its unique cultural elements and perceived sexual aspects, little is known how the contextual and gender dimensions of Grisi Siknis are played out in relation to the socio-political context in the region. Based on 16 months of ethnographic work in the Nicaraguan Miskitu Coast, including semi-structured interviews (n = 20) and participant observation, this article documents a semantic shift in the embodied and symbolic language of a cultural idiom of distress. I show how duhindu (Miskitu spirit associated with illness and misfortune) and witchcraft are symbols that share cultural resonance in the Miskitu community, while gender violence discourse is a new language incorporated into the logic of this cultural idiom of distress. I argue that this semantic shift allows the individuals in this study to communicate local experiences of complex forms of structural inequalities (migration status, unemployment, ethnic identity) and gender-based violence that tend to be normalized as a ubiquitous cultural problem while preserving the broader socio-cultural meaning the Grisi Siknis represents. The ethnographic accounts of Grisi Siknis provide empirical data to unpack the unexplored contextual processes and local discourses that transform the meaning and logic of cultural idioms of distress at the individual level of experience. [ABSTRACT FROM AUTHOR]

Anorexia Nervosa (AN) has the highest mortality rate of the mental disorders, with still less than 50% of affected individuals achieving recovery. Recent calls to bring innovative, empirical research strategies to the understanding of illness and its core psychopathological features highlight the need to address significant paucity of efficacious treatment. The current study brings a phenomenological approach to this challenge, synthesizing lived experience phenomena as described by qualitative literature. Fifty-three studies published between the years 1998 and 2021 comprising a total of 1557 participants aged 12-66 suffering from AN or sub-threshold AN are included. Reciprocal and refutational analysis generated six key third-order constructs: "emotion experienced as overwhelming," "identity," "AN as a tool," "internal conflict relating to Anorexia," "interpersonal communication difficulties" and "corporeality." Twenty-six sub-themes were identified, the most common being fear, avoidance, AN as guardian/protector, and AN as intertwined with identity. Some themes associated with current treatment models such as low self-esteem, need for social approval and feelings of fatness were less common. We highlight the significant role of intense and confusing emotion in AN, which is both rooted in and engenders amplified fear and anxiety. Restrictive eating functions to numb these feelings and withdraw an individual from a chaotic and threatening world whilst providing a sense of self around which to build an illness identity. Results have implications for therapeutic practice and overly protective weight and shape focused medical treatment models, which may serve to reinforce the disease. [ABSTRACT FROM AUTHOR]

Research into the history of doctor–patient relations or into the sick person's perspective on treatment and prophylaxis never ceases to enrich or even undermine existing theoretical approaches to the experience of illness. Ego-documents created by 'sick-men' in early modern Europe demonstrate complex patient behaviour that resembled neither the active 'patient–consumer' of the post-war period nor the ideal type of the passive 'patient–sufferer' of the nineteenth century. This article contributes to the scholarly discussion on illness experience, the history of the body and subjectivity by analysing unique eighteenth-century sources from the Russian archives. A comparative analysis of the self-account of a sick-person during the early period of the dissemination of learned medicine in imperial Russia reveals both expertise and personal reflection, and the role both ego-documents and printed calendars play in shaping self-observation skills. [ABSTRACT FROM AUTHOR]

While increasing numbers of North Korean refugees (NKRs) are migrating to South Korea, different understandings of physical pain between NKR patients and the South Korean healthcare providers may create miscommunication and less satisfaction with their care management. To identify strategies to improve care, this study elicits and presents an ethnomedical model of chronic pain among NKR women. Twenty semi-structured individual interviews were conducted with NKR women with chronic pain living in South Korea. Inductive and deductive thematic analysis was performed on three types of data: interview transcripts, field notes created after each interview, and memos written during the analysis. Participants reported that pain started after a certain period of resettlement and expressed frustration when there was no definite diagnosis for pain. They identified physical factors (e.g. excessive labor, exposure to violence, and poor diet) as the primary causes, while psychological factors (e.g. loneliness, rumination, and financial burden of sending remittances to North Korea) were viewed as collateral or contributing causes. Several participants indicated emotional discomfort when they were referred to psychiatrists for unceasing pain. Physical treatment (injections, medications, or acupuncture) and providers' sincere attitudes were expectations of care considered capable of addressing both physical and emotional distress. Findings highlight the need to understand NKR women's ethnomedical model of chronic pain, which is distinct from illness model of healthcare providers. These preliminary findings could be used to improve care strategies based on NKRs' care needs. [ABSTRACT FROM AUTHOR]

Abstract Background The incidence of Sudden Sensorineural Hearing Loss (SSNHL) is increasing and tends to occur at a young age. The patient’s disease experience during treatment is related to their physical and mental health. Effective coping styles such as proactively solving problems and asking for help will alleviate the patients’ psychological symptoms and improve their quality of life. Aims and objectives To explore the illness experience and coping styles of young and middle-aged patients with SSNHL (age: 18–64 years), clarify the relationship between the two, and understand the psychological state and needs of the patients. Methods The purposive and maximum difference sampling method was used to conduct semi-structured interviews with 23 young and middle-aged SSNHL patients. The interview data were analyzed by Colaizzi’s seven-step analysis. Results The illness experience of young and middle-aged SSNHL patients was complex, including symptoms during the onset of deafness and emotional experience before and after diagnosis. The coping styles of young and middle-aged SSNHL patients were active and diverse, including active acquisition of information, change in living habits, and seeking the care and attention of medical staff. Illness experience and coping style influence each other: good illness experience leads to active coping styles; active coping style results in good illness experience. Conclusions The illness experience of young and middle-aged SSNHL patients includes not only physical symptoms, but also changes in psychological and emotional reactions. Good illness experience can lead patients to adopt active coping style. Active and effective coping styles, such as positive acquisition of information, change in living habits and seeking care and help, can improve patients’ illness experience.

Abstract Background Chronic pain affects about 20 % of the Canadian population and can lead to physical, psychological and social vulnerabilities. However, this condition remains poorly recognized and undertreated. During 2020, as the COVID-19 pandemic disrupted daily living and health care systems, the situation of people with chronic pain has drawn little public attention. Methods This qualitative study was part of a pan-Canadian mixed-methods project and aimed to understand the experiences and challenges of people living with chronic pain during the COVID-19 pandemic in Canada. Between May and August 2020, we conducted in-depth semi-structured interviews with 22 individuals living with chronic pain across the country. We used reflexive thematic analysis to interpret data. Results Our findings underscored four dimensions of the chronic pain experience during the pandemic: (1) Reinforced vulnerability due to uncertainties regarding pain and its management; (2) Social network as a determinant of pain and psychological condition; (3) Increasing systemic inequities intermingling with the chronic pain experience; (4) More viable living conditions due to confinement measures. Though several participants reported improvements in their quality of life and reduced social pressure in the context of stay-at-home orders, participants from socio-economically deprived groups and minorities reported more challenges in accessing pain relief, health care services, and psychosocial support. Conclusions The COVID-19 pandemic has revealed and intensified pre-existing disparities and challenges among people living with chronic pain in terms of material resources, psychosocial condition, social support, and access to care. In post-pandemic times, it will be essential to address flaws in health and welfare policies to foster equity and social inclusiveness of people with chronic pain.

Anorexia Nervosa (AN) has the highest mortality rate of the mental disorders, with still less than 50% of affected individuals achieving recovery. Recent calls to bring innovative, empirical research strategies to the understanding of illness and its core psychopathological features highlight the need to address significant paucity of efficacious treatment. The current study brings a phenomenological approach to this challenge, synthesizing lived experience phenomena as described by qualitative literature. Fifty-three studies published between the years 1998 and 2021 comprising a total of 1557 participants aged 12–66 suffering from AN or sub-threshold AN are included. Reciprocal and refutational analysis generated six key third-order constructs: “emotion experienced as overwhelming,” “identity,” “AN as a tool,” “internal conflict relating to Anorexia,” “interpersonal communication difficulties” and “corporeality.” Twenty-six sub-themes were identified, the most common being fear, avoidance, AN as guardian/protector, and AN as intertwined with identity. Some themes associated with current treatment models such as low self-esteem, need for social approval and feelings of fatness were less common. We highlight the significant role of intense and confusing emotion in AN, which is both rooted in and engenders amplified fear and anxiety. Restrictive eating functions to numb these feelings and withdraw an individual from a chaotic and threatening world whilst providing a sense of self around which to build an illness identity. Results have implications for therapeutic practice and overly protective weight and shape focused medical treatment models, which may serve to reinforce the disease.

In this article, we discuss the potential of artist-researchers inviting research participants to engage directly in arts- and practice-based ethnographic work. To enable openings for this engagement, we find that the artist-researcher ontologically must stay oneself but also be able to share the self so that embodied knowing and years of embedded repertoires may find pathways of externalization, which may be walked co-creatively with research participants. In a reflexive conversation, we—Pini (dance artist, anthropologist) and Høybye (collaborative songwriter, ethnographer)—share insights from our respective artistic and academic fields to discern which areas of practice and knowledge creation may be similar, and which may be different. The aim is to identify how ways of working that have been transformative for us may be facilitated in interventions for others, and more specifically young cancer patients in our joint ongoing research project. [ABSTRACT FROM AUTHOR]