Perspectives on Neuromyelitis Optica Spectrum Disorders, the Narrative Medicine contribution to care.

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.

Cultural poetics of illness and healing.

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.

Getting back to normal? Identity and role disruptions among adults with Long COVID.

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.

The salience of gender in the illness experiences and care preferences of people with Parkinson's disease.

RATIONALE: In recent years, interest in sex characteristics and gender dimensions of Parkinson's disease (PD) has increased. Yet, much remains to be understood about how gender-related aspects specifically impact the illness and experiences of care in persons living with PD. OBJECTIVE: The purpose of this study was to explore the salience of gender-related aspects in the illness experiences and care provision preferences of people with PD. METHODS: A descriptive qualitative study including semi-structured life story interviews was conducted with men and women living with PD in the Netherlands. Between September 2020 and February 2021, forty people with PD (20 men and 20 women) participated in digital interviews of which thirty-one (18 men and 13 women) were included in the thematic analyses for this specific study. RESULTS: Overall, most participants did not consider gender-related aspects salient towards their illness experiences. However, when prompted, a number of participants described several stereotypical views about gender as related to the visibility of PD, emotional experiences, help seeking, role patterns and physical appearance. While most men and women with PD did not express specific gender-related preferences for their healthcare providers, those that did, all preferred women as healthcare providers. These preferences were generally related to attributed feminine traits which are considered relevant in routine, particularly sensitive, physical examinations of people with PD. CONCLUSION: This study demonstrates that although every person has a gender identity, the salience attributed to gender varies with illness experiences and in care provision preferences between people with PD. These findings highlight the need for precise and personalized methodologies to capture more nuanced insights into the impact of gender dimensions on PD. Furthermore, drivers behind gender-related preferences in care provision are multifactorial and warrant further investigation among people with PD.

Diagnosis and the practices of patienthood: How diagnostic journeys shape illness experiences.

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.

The hidden pandemic: a qualitative study on how middle-aged women make sense of managing their long COVID symptoms.

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.

The use of metaphors by service users with diverse long-term conditions: a secondary qualitative data analysis.

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.

Gender Differences in Experiences and Expectations of Hemodialysis in a Frail and Seriously Unwell Patient Population.

Introduction: Surprisingly few studies have explored the experiences of seriously unwell people with kidney disease on hemodialysis therapy: we conducted a mixed-methods study to investigate gender differences in illness experience, symptom burden, treatment considerations or expectations in this cohort. Methods: Seriously unwell people on hemodialysis (1-year mortality risk of >20%) at 3 hospital-based units were invited to take part in a structured interview or to complete the same questions independently via a questionnaire. A total of 54 people took part (36 males, 18 females); data analysis was undertaken using a thematic approach. Results: "Desire to keep living" is the most important and basic thought process when starting dialysis. Fear also predominates influencing risk assessment and decision-making. Once fear is managed, there are physical, social, practical and emotional issues to rationalize, but choice only seems possible if shared decision-making is part of the consultation.Gender differences were seen in perceived hopes and expectations of treatment. Males were more likely to prioritize achievement of physical goals, with females prioritizing a wish to feel well. Both genders reported significantly higher symptom scores than their health care provider perceived, however this difference was more marked in females. Dialysis regret existed in >50% of participants and 6 out of 54 (11%) stated that they would have chosen no dialysis at all. Females were more likely to report feeling depressed (P = 0.001). Conclusion: Different genders approach treatment decisions and prioritize treatment expectations differently. Recognizing this will allow personalized care plans to be developed and improve the experiences of seriously unwell people with kidney disease.

Para além das classificações biomédicas: a experiência do câncer de mama no Brasil, 1990-2015 / Beyond biomedical classifications: breast cancer experience in Brazil, 1990-2015

Resumo Analisa as experiências de adoecimento por câncer de mama de mulheres em tratamento no Hospital do Câncer III do Instituto Nacional de Câncer, Rio de Janeiro. Argumenta que parte da experiência das mulheres entrevistadas foi construída pela interação entre a convivência familiar e a mobilização de diferentes significados culturais da doença e da feminilidade, negociando sentidos para entidades biomédicas. O estudo resulta de uma pesquisa qualitativa de inspiração etnográfica, que entrevistou mulheres em tratamento de câncer de mama ao longo de 2015. Parte dos depoimentos para discutir a interação da sociedade com as entidades biomédicas para a significação do câncer no Brasil entre as décadas de 1990 e 2010.

Abstract The paper analyses illness experiences of breast cancer in women undergoing treatment at the Hospital of Cancer III of the National Institute of Cancer. It argues that part of the interviewed women's experience was constructed from the interaction between family coexistence and the mobilisation of different cultural meanings of the disease and femininity, negotiating senses for biomedical entities. The study results from a qualitative research of ethnographic inspiration that interviewed women undergoing treatment from breast cancer during 2015. It draws on the accounts to discuss the interaction of society with biomedical entities for the significance of cancer in Brazil between the 1990s and 2010s.

'In an otherwise limitless world, I was sure of my limit.'† Experiencing Anorexia Nervosa: A phenomenological metasynthesis.

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.

Investigating PTG in Cancer Patients: The Role of Time Dimension in the Experience of Personal Growth.

This study explored the experience of growth related to being a cancer patient by implementing a thematic analysis. An online questionnaire was completed by 69 patients narrating their growth experience related to cancer. Collected narratives were analyzed by running a deductive thematic analysis, starting from the five domains of the Post-Traumatic Growth Inventory (PTGI) and searching for the presence or absence of topics. Descriptive statistics and correlational analysis were performed. The five factors of the PTGI were identified in the narratives. The thematic analysis we performed defined a further theme that we labeled the "time dimension", which saturated 37.7% of the entire sample. The presences of four sub-themes related to the "time dimension" were also found: "tracing a new temporal rhythm", "the value of deserved time", "facing the caducity of life" and "a view on the future". Each sub-theme significantly correlated with the theme of the "time dimension". This emergent theme does not correlate in our results with other domains of personal growth in cancer previously described in the scientific literature, emerging as an independent variable not significantly associated with other domains of post-traumatic growth. Our results suggest further investigation in the role of the time dimension in the practical and emotional experience of growth with regard to cancer.

Doctors, Patients, and Interpreters' Views on the Co-Construction of Empathic Communication in Interpreter-Mediated Consultations: A Qualitative Content Analysis of Video Stimulated Recall Interviews.

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.

The Illness Experience of Long COVID Patients: A Qualitative Study Based on the Online Q&A Community Zhihu.

Long COVID is a public health problem that cannot be ignored, and it is critical to understand the long COVID patients' living situations and support this group through their illness narratives. This study is based on grounded theory, and coded the self-produced texts of long COVID patients on the largest online Q&A community in China, Zhihu APP, in an attempt to explore the illness experiences of long COVID patients in China and to understand how they adapt to their illness and reconstruct their lives. The results show that patients face not only the threat of pain from the illness itself, but also social stigma and discrimination. Patients turn their illness experiences into motivation to move forward and reconstruct self and life by 'pushing forward the biographical flows again', 'impression management' and 'self-compassion'. These findings can help policy-makers and medical institutions to provide timely and appropriate policy support and psychological assistance to patients with long COVID, to create a supportive and inclusive social environment, and to reduce discrimination and stigma against them.

Black boxes and information pathways: An actor-network theory approach to breast cancer survivorship care.

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 women's 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.

Grisi Siknis: A cultural idiom of gender-based violence and structural inequalities in eastern Nicaragua.

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.

Systems of support for foreign-born TB patients and their family members.

SETTING: Adverse social determinants of health for people who are foreign-born are key drivers of TB-related disparity, particularly in low-incidence countries. Patients diagnosed with infectious TB and their family members must confront psychosocial challenges which may deepen pre-existing health inequities. However, little is known about patient and family members' perspective on these experiences. OBJECTIVE: To explore the infectious TB experience of patients and family members who are foreign-born. DESIGN: This study formed one component of an ecologically framed, qualitative case study conducted in Calgary, AB, Canada. Data were collected using semi-structured interviews, chart review and field notes, and analysed thematically. RESULTS: Eight families were represented in the sample comprised of six patients and 13 family members. Many patients and family members experienced high levels of fear and stress for months following the patient's diagnosis. Isolation was pervasive and multifaceted for both patients and family members. Intra-family support was critical for managing during early stages when the situation was most challenging. Support from outside the family was not prominent and attempts to obtain support from government programmes for paid sick leave and health insurance were mostly unsuccessful. CONCLUSION: Patients and family members who are foreign-born experience multidimensional isolation as a result of TB stigma, language barriers and poor access to government programmes. TB programmes cannot meet family needs alone and systems of support should be created through collaboration with government institutions, and organisations serving ethnocultural communities.

CONTEXTE: Les déterminants sociaux défavorables en matière de santé pour les personnes nées à l'étranger sont des facteurs clés d'inégalités face à la TB, notamment dans les pays à faible incidence. Les patients atteints de TB contagieuse et leurs proches sont confrontés à des difficultés psychosociales, qui peuvent creuser les inégalités préexistantes en matière de santé. Cependant, le ressenti des patients et de leurs proches concernant cette expérience est peu connu. OBJECTIF: Analyser l'expérience des patients, nés à l'étranger, atteints de TB contagieuse et de leurs proches. MÉTHODES: Cette étude est l'une des composantes d'une étude de cas qualitative et écologique réalisée à Calgary, AB, Canada. Les données ont été recueillies à l'aide d'entretiens semi-structurés, d'analyses des dossiers et de notes de terrain ; elles ont ensuite été analysées thématiquement. RÉSULTATS: Huit familles étaient représentées dans l'échantillon, composé de six patients et de 13 proches. De nombreux patients et proches ont décrit d'intenses niveaux de stress et de peur au cours des mois ayant suivi le diagnostic des patients. Les patients et leurs proches ont subi un isolement systématique aux multiples facettes. Au stade précoce de la maladie, lorsque la situation était la plus compliquée, l'aide intra-familiale s'est avérée essentielle pour la prise en charge des patients. Les familles n'ont reçu que peu d'aide en dehors du cadre familial et les tentatives effectuées pour obtenir l'aide des programmes gouvernementaux (rémunération du congé maladie et assurance maladie) se sont avérées infructueuses la plupart du temps. CONCLUSION: Les patients et leurs proches, nés à l'étranger, ont subi un isolement pluridimensionnel en raison de la stigmatisation liée à la TB, de la barrière de la langue et du manque d'accès aux programmes gouvernementaux. Les programmes de lutte contre la TB ne peuvent pas satisfaire les besoins des familles à eux seuls. Des systèmes d'aide devraient être créés au travers de collaborations avec les institutions gouvernementales et les organisations œuvrant auprès des communautés ethnoculturelles.

Perceived Unmet Need and Need-Related Distress of People Living With Dementia.

The unmet needs of people living with dementia have been shown to be multidimensional and impact well-being. However, there are a lack of studies examining variability of unmet needs and need-related distress from the person living with dementia's perspective. The current study (n = 12) examined the self-reported unmet needs and need-related distress of people with mild to moderate dementia. Seventy-five percent of participants (n = 9) identified at least one unmet need and 50% (n = 6) reported 10 or more unmet needs. "Finding and Arranging Services" and "Health Information" subscales had the highest reported average unmet needs. The most frequently reported unmet need-item was "getting information about your memory problems?" Participants reported variability in distress for both unmet and met needs. Continued research can provide beneficial information on the relationship between unmet needs, need-related distress, and outcomes of well-being for future interventions.

Illness Experiences of Advanced Cancer Patients in Taiwan.

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.

Response-Liminality and the Mirage of Settlement.

Little and colleagues' (1998) paper describing a key aspect of cancer patients' experience, that of "liminality," is remarkable for giving articulation to a very common and yet mostly overlooked aspect of patient experience. Little et. al. offered a formulation of liminality that deliberately set aside the concept's more common use in analysing social rituals, in order to grasp at the interior experience that arises when failing bodily function and awareness of mortality are forced into someone's consciousness, as occurs with a diagnosis of cancer. We set out the reasons as to why this analysis was so significant in 1998-but we also consider how the "liminality" described by Little and colleagues was (as they suggested) a feature of modernity, founded on what we term "the mirage of settlement." We argue that this mirage is impossible to sustain in 2022 amid the many forms of un-settling that have characterized late modernity, including climate change and COVID-19. We argue that many people in developed nations now experience liminality as a result of the being forced into the consciousness of living in a continued state of coloniality. We thus rejoin the social aspects of liminality to the interior, Existential form described by Little et. al.