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.

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.

Experiencing COVID-19, home isolation and primary health care: A mixed-methods study.

Objectives: Although 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). Methods: A 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. Results: A 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. Conclusions: Our 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.

Experiências de adoecimento por condições crônicas transmissíveis: revisão integrativa da literatura / Illness experiences due to communicable chronic conditions: integrative literature review

Resumo O objetivo deste artigo é identificar e descrever as experiências de adoecimento de pessoas que vivem com condições crônicas transmissíveis. Revisão integrativa da literatura foi realizada em maio de 2015 nas bases de dados PubMed, Literatura Latino-Americana e do Caribe em Ciências da Saúde (Lilacs) e Scopus. A partir do cruzamento de palavras-chave e de descritores controlados, foram adotadas oito estratégias de busca, que resultaram na seleção final de 12 artigos. Realizou-se fichamento dos artigos, sendo elaboradas duas categorias temáticas, tendo em vista o agrupamento de temas coincidentes: (1) experiências com as condições crônicas transmissíveis; e (2) estratégias de enfrentamento das condições crônicas transmissíveis. Identificou-se o estigma como sendo a experiência de maior impacto na vida dos sujeitos, o qual reverberou em sentimentos negativos. Apesar disso, os sujeitos adoecidos adotaram hábitos de vida saudáveis, bem como apoiaram-se na religiosidade/espiritualidade e no dimensionamento do tempo como forma de harmonizar sua convivência com as doenças. Observou-se, ainda, que a rede de apoio (família, serviços de saúde) tem papel fundamental na vivência das condições crônicas transmissíveis. Os sujeitos experimentam sensações e sentimentos negativos desde o diagnóstico, seja pela fragilidade que a doença impõe ao seu organismo, seja pela manutenção da condição que os torna mais vulneráveis à discriminação, ao preconceito e ao estigma. Torna-se necessário fortalecer a rede de apoio em torno do sujeito, no sentido de favorecer a melhoria na qualidade de vida das pessoas que vivem com condições crônicas transmissíveis.

Abstract The objective of this article is to identify and describe the illness experiences of people living with communicable chronic conditions. An integrative literature review was carried out in May 2015 in the PubMed, the Literature in the Health Sciences in Latin America and the Caribbean (LILACS) and in the Scopus databases. Through the intersection of keywords and controlled descriptors, eight search strategies were conducted and resulted in the final selection of 12 articles, which were catalogued into two theme categories, in order to group matching themes: (1) experiences with communicable chronic conditions; (2) coping strategies for communicable chronicle diseases. Stigma was identified as the most impacting experience in subjects' lives, which reverberated negatives feelings. In spite of their illness, subjects adopted healthy lifestyle habits and found support on religiosity/spirituality and on the dimensionality of time as a way to live harmoniously with diseases. We also noticed that the support network (family, health services) plays a key role in the process of living with communicable chronicle diseases. Since the diagnostic, the subjects experience negative feelings and sensations not only because of the fragileness that the disease imposes on their body but also because of the maintenance of the condition, which make them more vulnerable to discrimination, prejudice and stigma. It becomes necessary to strengthen the support network around the subject, in order to encourage improvements in the quality of life of people living with communicable diseases.

Understanding unexpected courses of multiple sclerosis among patients using complementary and alternative medicine: A travel from recipient to explorer.

Complementary and alternative medicine (CAM) is frequently used by patients with multiple sclerosis (MS). Some MS patients experience unexpected improvements of symptoms, which they relate to their use of CAM. The aim of this study was to obtain knowledge and develop understandings of such self-defined unexpected improvement of MS symptoms. Two cases were constructed based on documents and 12 qualitative interviews. Our aim was not to make generalisations from the cases, but to transfer knowledge as working hypotheses. We identified four health-related change processes: the process of losing bodily competence; the process of developing responsibility; the process of taking control; and the process of choosing CAM. The patients explained unexpected improvements in their MS symptoms as results of their own efforts including their choice and use of CAM. In our theoretical interpretations, we found the patients' redefinition of history, the concept of treatment and the importance of conventional health care to be essential, and leading to a change of patients' position towards conventional health care from recipients to explorers. The explorers can be perceived as boundary walkers reflecting limitations within the conventional health care system and as initiators regarding what MS patients find useful in CAM.

Incapacidade, cotidiano e subjetividade: a narrativa de trabalhadores com LER/DORT / Incapacidad, cotidiano y subjetividad: la narrativa de trabajadores con LER/DORT / Disability, everyday life and subjectivity: the narrative of workers with RSI/WMSD

Objetivou-se conhecer a experiência de adoecimento de trabalhadores com Ler/Dort, apoiando-se nos pressupostos da "experiência de enfermidade" e nas "narrativas da doença". Foram utilizadas a técnica de entrevista narrativa e a análise temática para se apreenderem as categorias que emergiram do discurso dos oito sujeitos participantes desta pesquisa. Os resultados apontam que a "ineficiência do corpo" para o trabalho foi evidenciada pelo descompasso entre a produção exigida pelo trabalho e a produzida pelo corpo do trabalhador. O corpo funciona como um "suporte de signos" das mudanças no comportamento e nas estruturas do corpo, ajudando a consolidar o imaginário de incapacidade. "As metáforas" representam o atestado público de declínio profissional e o descrédito quanto à condição de enfermo. Conclui-se que a incapacidade se manifesta precocemente na percepção de ineficiência do trabalhador no processo produtivo, porém sua legitimação parece ser tardia, custando o preço da cronificação e da invalidez para o trabalhador.

The aim was to examine how workers with repetitive strain injuries (RSIs)/ work-related musculoskeletal disorders (WMSDs) experience sickness, by drawing upon the notions of "experience of illness" and "disease narratives". The narrative interview technique and thematic analysis were used to understand the categories emerging from the discourse of the eight participants in this study. The results indicated that "body inefficiency" for work was shown by the mismatch between the production required for the work and what the workers' bodies produced. The body played a sign-supporting role regarding changes in behavior and body structure, thereby helping to consolidate the imagery of disability. Thus, metaphors publicly attested to professional decline and discredited the condition of illness. It was concluded that although the disability was expressed early among the perceptions of the workers' inefficiency within the productive process, it seemed to be legitimated later, at the cost of the workers' chronic disease and disability.

Se ha objetivado conocer la experiencia de enfermar en trabajadores con LER/DORT con apoyo en los presupuestos de la "experiencia de enfermedad" y en las "narrativas de la enfermedad. Se utilizaron la técnica de entrevista narrativa y el análisis temático para aprehender las categorías que emergieron del discurso de los ocho sujetos participantes de esta investigación. Los resultados indican que la "ineficiencia del cuerpo" para el trabajo se evidenció por el descompás entre la producción exigida por el trabajo y la producida por el cuerpo del trabajador. El cuerpo funciona como un"soport e de signos" de los cambios en el comportamiento y en las estruoturas del cuerpo ayudando a consolidar lo imaginario de Incapacidad, "Las metáforas" representan el certificado público de declinio profesional y el descrédito en cuanto a la condición de enfermo. Se concluye que la incapacidad se manifiesta precozmente en la percepción de ineficiencia del trabajador en el proceso productivo pero su legitimación parece tardía, costando el precio de cronicidad y de la invalidez para el trabajador.

A Study of CVA patients' Experience of the Illness / 간호학회지

This work was done for 9 patients having experience of a herb medical treatment after being diagnosed as CVA during a year from January, 1996 to December, 1996 by using an ethnographic research method. The summarized result of this research are following. I. The Experience of The Illness. First, the falling-ill phase is the time that they have the first stork of paralysis and the decision pattern of medical institution' comes out. The emotional experience in the period is something like 'frustration', 'anxiety', 'despair', and 'expectation'. Second, the active-treatment phase is the time that the patients as well as their family or care giver not only show the positive attitude and actively participate in the illness treatment but also show a lot of interest in medical institutions and activities of health recovery. There is a primary factor of the continuation of treatment as an experience of treatment and being crushed and sensitivity as an experience of the illness. Third, the rehabilitation phase is the time that the patients or their family become tired and insensitive to the treatment and recuperation, and then reduce the treatment activity. There is a primary in fluence factor of the discontinuance of treatment as an experience of treatment and physical experience and emotional experience as an experience as an experience of the illness. The physical experience is divided into 'personal-hygiene care', and 'the sphere of activity'. The emotional experiences are 'blaming someone', 'contempt' and 'despair' as a negative experience and 'hope' as a positive experience. II. Coping Strategy. There are a physical coping, an emotional and mental coping, a coping, a social coping, and a spiritual coping as a coping strategy used for the patients to overcome their illness and adjust themselves to their altered life. First, the physical coping comes out as 8 categories, 'using and auxiliary tool', 'doing exercise', 'protecting', 'improving their diet', 'taking care of something', 'using subsidiary medicines', 'trying a folk remedy', and 'having interest in their health'. Second, for the emotional and mental coping, there are 'accepting' and 'trying' as a positive coping and a failure of control as a negative coping. Third, the social coping is appeared as 'being supported'. Fourth, the spiritual coping is recognized as 'recourse to God' and 'preparation of death'. After all, the elderly CVA patients in a agricultural area choose the act of treatment based on the traditional belief and the relationship with a caretaker. A personal health can be maintained by taking care of themselves and controling their mind, and the overcome of the illness is decided on the basis of traditional concepts and cultural principles in which the patients as well as the family, neighbors and take care should work out together and cooperate with each other in order to achieve that.