The embodied experience of genetic inheritance in hereditary thrombophilia.

Our study focuses on exploring the embodied experiences of genetic inheritance within and between bodies. Drawing on insights from studies on embodied experiences and family risk we examine how interviewees perceive their vulnerability, negotiate family narratives, genetic inheritance, and the transmission of genetic knowledge within families. To answer these questions, we conducted an interpretative phenomenological analysis, based on 10 in-depth interviews with patients with thrombophilia diagnosis and venous thromboembolic disease, in Hungary. Three Experiential Themes were identified: The body as a repository of risk (1), Family heritage (2), and The borderline of thrombophilia-liminality (3). Our study has found that patients living with thrombophilia interpret their bodies as repositories of genetic risk. It seems that an important aspect of adapting to thrombophilia is the creation of genetically vulnerable identities. Alongside the new identity(ies), living with risk can induce newly discovered forms of familial responsibility, within the common identification experience of family history and succession. Based on our research, we see that individuals living with thrombophilia experience the liminality of borderlands. In some cases, however, the space between health and illness represents a dynamic permeability for people with thrombophilia, which can be triggered by medical uncertainty in addition to individual experiences and life events.

Rethinking the logic of early diagnosis in cancer.

To reduce morbidity and mortality of cancer, more countries have implemented strategies to detect cancer, based on the logic of 'the sooner the better'. Time is thereby an essential component in how cancer research, policies, and prevention are practiced today. Where the logic of early diagnosis benefits some, the logic also produces harms. In this article, we use a cross-disciplinary case-study design to discuss how different notions of time and linearity are essential in today's research ontology of cancer, describe the individual and societal consequences of such ontology, and invite a rethinking of time in cancer. Drawing on theoretical concepts of time together with cancer epidemiological, historical and ethnographical data, we analyse how the logic of early diagnosis has been established as a stable concept. Although evidence supporting the logic points in different directions, the message 'the sooner the better' is currently not being challenged by research, policy or society. This at least partly, can be explained by a linear perception of time and societal traces of neoliberalism and acceleration in our society together with cancer still being a somewhat enigmatic disease that requires acute action. To support a sustainable healthcare sector, we argue there is a need to nuance the logic of early diagnosis. Continuing the linear perception of symptoms and cancer, risks doing more harm than good by making more people patients unnecessarily and by spending health resources on those with the least need.

Biographical disruption, redefinition, and recovery: Illness identities of women with depression and diabetes.

The rich conceptual literature on illness experiences has been based largely on singular diseases/conditions. However, over the last few decades, more complex disease patterns and increased longevity have complicated our understanding of how people experience illness. This study builds upon existing theoretical constructs (e.g. biographical disruption) to more robustly capture the illness experiences of those living with multi-morbid conditions. In-depth interviews, examining the post-diagnostic experiences of women living simultaneously with common somatic (diabetes) and psychiatric (clinical depression) conditions, revealed participants' evolving socially embedded illness identity, as they engaged in (re-)constructing new biographies. Socially contextualized situations shaped and were shaped by their illness identity as they managed social relationships, medication use, and choice of providers. Although diagnosed for years, many continued to have lives in upheaval. While most experienced crumbling self-images and described disrupted biographies, others experienced different trajectories with corresponding illness identities. A new typology emerged, extending Bury's concept of disrupted biographies to encompass redefined, and recovered, biographies, within and across the comorbid conditions.

Visualising, navigating and making time: The use of a digital solution in treatment and rehabilitation from low back pain.

Illness trajectories are particularly characterised by the temporal dimension of human existence. In the area of low back pain, patients often have challenging temporal experiences such as unproductive waiting time and fragmented, repetitive consultations over many years. This study seeks to investigate relationships between digital technologies, temporal agency, and illness, through describing how users experienced a new digital solution, BackTrace, targeting patients with low back pain. The study builds on six months of ethnographic fieldwork, including semi-structured interviews, participant observation and a workshop. The study shows how the introduction of the digital solution could facilitate new possibilities of temporal actions for individuals living with and receiving care for low back pain. For many research participants, the use of BackTrace facilitated a useful visualisation of their past and present low back pain state; BackTrace could assist participants in navigating different external temporal demands; and it allocated time devoted to managing their back pain in everyday life and in consultations with health professionals. The study discusses how temporality can be a useful analytical entrance point to operationalise and explore the often-desired goal of empowerment in patient pathways.

"The Depressed" and "People with Anxiety" therapists' discursive representations of patients with depression and anxiety in Danish Psychiatry.

Stigmatization within mental health care has previously been identified, and some diagnoses have been shown to be particularly exposed to negative attitudes and stigma. However, no previous studies have explored practitioners' discursive construction of patients with different diagnoses within a transdiagnostic group context. We performed discourse analysis on 12 interviews with Danish mental health practitioners, who had been conducting either transdiagnostic psychotherapy (The Unified Protocol) or standard group cognitive behavioral therapy (CBT) with patients treated for anxiety disorders or major depressive disorder. The purpose of this study was to identify how patients with anxiety and depression were represented by therapists. We identified a "training discourse," within which patients were evaluated through perceived motivation, responsibility, active participation, and progression. We argue that this training discourse can be related to a broader neoliberal order of discourse valuing efficiency and agency. The analysis indicated that patients with anxiety were sometimes "favorized" over patients with depression, and it is argued that the neoliberal order of discourse and pre-assumptions related to the diagnoses are contributing to this. The interviews indicate that multiple discourses were applied when describing patients, and ambivalence was often detectable. We discuss the findings of the analysis in relation to therapists' general critical attitudes toward the psychiatric system and in relation to broader societal tendencies.

The unexpected other: Challenges and strategies after acquired impairment.

People experiencing traumatic brain injury or multitrauma will often live with problems in functioning for a profound period in life. A situation of great complexity emerges involving both the experience of an impaired body and the experience of a changed social position. This article addresses the intricate relations between the altered body, personal ambitions, and social surroundings in the first 2-3 years after an injury. The conceptual framework centers around the process of change, applying concepts such as the unexpected other and biographical reconstruction. Twenty-one people of working age were interviewed two times. All interviewees had experienced traumatic brain injury or multitrauma. A thematic narrative analysis was applied. Consequences of the injury took place at a carnal level where fatigue is something completely different from becoming exhausted and where elimination of body waste takes place through practices novel to the injured person. Living with impairment also took place at the level of social interaction. Here, family relations, shame, and establishing a new identity seemed profoundly important. This article makes two novel contributions. First, it emphasizes more than previous studies do that the daily management of altered body functions is more important for independence and wellbeing. Second, the article identifies the narrative about the accident as an important issue for injured people to settle.

Unintended harm: A qualitative study of "harm" upon people who inject drugs in Bangkok, Thailand.

Given the highly pervasive health threats faced by people who inject drugs, harm reduction has been implemented in Thailand. Although harm reduction is a particularly effective public health strategy for reducing risky behavior, it is currently practiced with minimal understanding of unintended harm-drug policy, social exclusion, stigma, and discrimination-for people who inject drugs (PWID) in Thailand. This study aims to understanding the "unintended harm" encountered by people who inject drugs in Bangkok in their everyday lives through social interaction at all levels of society from macro, micro, and individual levels. In-depth interviews were conducted with 28 people who inject drugs in Bangkok (21 men and 7 women) and 4 people who are a nurse, a community leader, a policeman, and a family member (2 men and 2 women). The result shows that individuals, society, and politics are not separable phenomena and all produce harm upon people who inject drugs. These unintended harms on the macro, micro, and individual level are closely linked; each in their own way poses a threat to the health and well-being of people who inject drugs and embody negative social responses as the people who inject drugs become typecast as "deviants." In conclusion, there is an urgent need to develop a "harm reduction" model that addresses unintended harm and could be integrated within the existing socio-cultural context of Thai society.

Taking care of oneself and others: The emotion work of women suffering from a rare skin disease.

In this article, we analyze the emotion work of women suffering from pemphigus, a rare skin disease. We suggest that this approach sheds new light on the upheavals caused by illness and more generally on the experience of illness itself. Our study draws on a series of 27 interviews with pemphigus patients whose average age was 57. We show that serious and chronic illness does not radically alter the feeling rules in place with close friends and family, despite the uncertainty and emotional upheaval confronting patients. The emotion work they carry out should be understood in light of roles and places established prior to the onset of the disease. Emotion work is embedded in the broader history of relationships with family and friends and prior episodes of illness help create particular configurations and expectations.

The immune self, hygiene and performative virtue in general public narratives on antibiotics and antimicrobial resistance.

This paper employs an assemblage lens to generate analyses of general public narratives on antimicrobial resistance (AMR). Global efforts to reduce AMR include communications aiming to promote general public awareness, provide knowledge, encourage careful antibiotics use, and discourage demands for them. These efforts are somewhat compromised by the assumptions they make of individual lack of knowledge and motivation and the manner in which the AMR problem is framed in isolation from the biological, social and economic structures that produce it. Conceptualising AMR as an effect of antimicrobial assemblages of which publics are but one part, we analysed interviews with the general public on the lived experience of infections, antibiotic treatments and AMR. Far from science and policy discourse on AMR, these narratives showed antibiotics to be partly solutions to the social and biomedical challenges of infection, framed by self-defensive immunity and hygiene, the affective benefits of 'immune boosting', and the imperative to sustain the moral standing of the healthy citizen. Failing public awareness and action on AMR can be attributed to public health messages that overlook the social, affective and moral dimensions of infection care and separate AMR from its socio-economic drivers.

Parental experiences of the liminal period of a child's fatal illness.

The article offers a description of parents' experiences of their child's ultimately fatal illness as it unfolds over the successive stages of medical treatment, in the context of the liminality theory. The parents (N = 23) were interviewed 1-4 years after their child's death. The research method involved conducting narrative interviews with parents in order to obtain a spontaneous narration of the child's illness as it unfolded. The grounded theory approach, including the narrative and performative aspects of such parental utterances, was applied as the main research strategy. The results provide insight into the main areas and processes of common parental experiences, such as the pervasive sense of becoming trapped in timelessness and ambiguity. Further states reported by parents included oscillating between a distancing stance and involvement, and a dualistic relationship with medical staff and the medical system: between alignment and disharmony. The study indicates the importance of treating delivery of such a diagnosis as a process rather than as a one-time event. The sense of ambiguity is treated as a kind of necessary parental coping mechanism, whilst the sense of timelessness gives parents a unique sense of time in which they do not have to think about the child's potentially imminent death.

'Madness' after the war in Bosnia and Herzegovina - challenging dominant understandings of distress.

This article reports on the findings from a small-scale co-produced qualitative study on experiences of distress caused by the war in Bosnia and Herzegovina (BiH). Inspired by the emerging interdisciplinary field of Mad Studies, the study is novel and unique in two ways. First, it prioritises social understanding and interpretation of madness and distress. Second, an emphasis is placed on experiential knowledge. Beyond interviews with 20 people who experienced distress due to political conflict, this included contextualisation of the study in the knowledge generated through survivor research and within the field of Mad Studies. Study findings highlight the social causes and consequences of distress caused by conflict, such as war-related violence, gender-based violence, experiences of poverty and corruption. Participants stressed the importance of safety and support within their own home, mutual and supportive relationships with their families, friends, other people who experienced distress, the broader community and opportunities to do everyday activities they enjoy. In terms of professional support, the findings suggest that poverty alleviation and protection of people's right to self-determination through access to human rights advocacy and representation may be as relevant as non-coercive community-based services. This indicates that support for distress caused by political conflict need not be different from any other support for people who experience distress. Emphasis should be placed on survivor-run initiatives and non-coercive, community-based support which addresses social causes of distress and enables people to exercise self-determination.

The interactive dimensions of encounters in HIV care: From trauma to relational traumatic growth.

INTRODUCTION: A person-centred model of care, developed in the early days of the HIV epidemic when there were no effective treatments for HIV, led to relatively close relationships between carers and people living with HIV (PLWH). Our study examines the experiences of carers using a relational framework, exploring the traumas and challenges involved, coping practices instigated by carers and the emergence of 'relational traumatic growth' opportunities. METHODS: Twenty-two UK healthcare workers and charity volunteers working with PLWH from the early years of the epidemic were recruited. Semistructured interviews were used to elicit participants' own stories of working with PLWH, from their initial involvement to the present time, and their reflections on the personal impact of working in the field of HIV. Data were analysed using a thematic approach employing relational categories. RESULTS: The impact of care was related to the formation of close relationships, identification with PLWH, high numbers of deaths and the difficulties and challenges encountered relationally. Participants described attempts to cope through informal and formal support, as well as endeavours to manage professional boundaries. Various ways of making sense of experiences were described, ranging from denial to abandoning the HIV field, to intense commitment. For some, traumatic experiences lead to validation, a search for personal meaning and managing the sense of loss with an exploration of further ventures, contributing to the achievement of relational traumatic growth. CONCLUSION: The intensity of relationships in HIV work, developed through the emotional and practical work of caring for PLWH, led healthcare workers and volunteers to experience a range of psychological consequences, both negative (including distress and emotional exhaustion) and also positive (such as acquiring a sense of purpose). PATIENT OR PUBLIC CONTRIBUTION: People living with HIV and those working with them were involved in the initial study conceptualization and design. The second and fourth authors of this paper were professionals working in HIV throughout the pandemic and have led on all aspects of the study. People living with HIV and those working with them additionally guided participant selection by suggesting participants and supporting recruitment. Narrative transcripts were checked and amended (if necessary) by participants. Initial findings were presented at the AIDS impact conference, where PLWH and those working with them attended and feedback on important ideas that helped to prioritize and shape the study findings.

Becoming a complementary health practitioner: The construction of alternative medical knowledge.

Complementary and alternative medicine (CAM) has become widely popular in many countries, yet little is known about the actual training of CAM practitioners. This article employs ethnographic research methods to closely examine the meaning-making processes used in such training at a complementary and alternative medical college. It delineates how CAM practitioners in training, specialising in naturopathy, make sense of alternative medical knowledge and transform it into medical truth. The study indicates that the core of CAM training rests on overturning the biomedical epistemological hierarchy between the objectification of disease and the experience of illness through extended intersubjective sharing by instructors and students. This study therefore adds to the extensive CAM literature by carefully examining the way naturopathic knowledge is inculcated during practitioner training. The emerging insight is that introspection and the search for authenticity, a central narrative of modernity, have become powerful resources in CAM's construction of alternative medical truth.

Disengaging with the cancerous body.

In recent years, the organisation of healthcare in many welfare states is gradually moving towards an individualised and responsibility-driven self-care and use of healthcare services. Departing in this restructuring of care, this article explores how bodies are experienced and how care is sough, by socially disadvantaged cancer patients. Based on repeated ethnographic interviews with 10 socially deprived cancer patients in Denmark, the article illustrates that socially disadvantaged cancer patients often experience their bodies and move between feeling fine and feeling sick in a disjunctive manner engulfed by the practicality of getting through the day. From a critical phenomenological perspective, we argue that this way of being in the world appears counterfactual to welfare expectations of proactive attention to the body, and contemporary moves towards increased individual responsibility for preventing serious disease and monitoring the body.

Negotiating exercise as medicine: Narratives from people with type 2 diabetes.

The dominant notion that exercise is medicine puts a strong normative emphasis on individual responsibility for participation in sport and physical activity. The aim of this article was to explore how people with type 2 diabetes, a condition strongly linked to lifestyle behaviour both in origin and in management, translate this notion into their daily life. Based on a critical narrative analysis of stories of 18 Dutch people diagnosed with type 2 diabetes collected between 2012 and 2016, we found a range of meanings given to sport and physical activity. In addition, almost all respondents seemed to subscribe to the notion of exercise as medicine on a general level, either quite explicitly or in more subtle ways, for example, elicited by the interview setting. However, they employed different strategies to negotiate with the translation of this notion into their daily life, ranging from (almost) total acceptance to resistance. In addition, nearly all stories revealed mostly negative experiences with care and professional support regarding the uptake or continuation of sport or physical activity participation after diagnosis.

The social capitals of recovery in mental health.

In this article, we examine the process of recovery in people who have undertaken treatment for mental health problems, based on interviews with 34 participants. We describe their experiences through the lens of social capital, focusing on the social networks and relationships within which they are embedded and which they utilise to give purpose and meaning to their lives. The accounts give sense of movement from relationships, institutions and networks which were provided through their engagement with services towards relationships outside the health care system which were more freely chosen and which provided a sense that they were able to achieve recognition and make a contribution. The latter included activities such as art, theatre and sport. The relationships and institutions with which they were engaged via the statutory services were described as burdensome and inappropriate, whereas those which were freely chosen appeared more emancipatory and positively constitutive of identity. We have called this latter experience one of 'intentional social capital' because the participants were deliberately choosing and orienting to these networks and were able to derive pleasure and a sense of self from them. The findings have implications for how we see the situation of people recovering from mental health problems inasmuch as professional attitudes and practices could usefully be extended to more fully recognise and encourage wider patterns of social engagement and fulfilment occurring outside the limited contribution of clinical definitions and clinical interventions.

Living with multimorbidity? The lived experience of multiple chronic conditions in later life.

Multimorbidity is defined biomedically as the co-existence of two or more long-term conditions in an individual. Globally, the number of people living with multiple conditions is increasing, posing stark challenges both to the clinical management of patients and the organisation of health systems. Qualitative literature has begun to address how concurrency affects the self-management of chronic conditions, and the concept of illness prioritisation predominates. In this article, we adopt a phenomenological lens to show how older people with multiple conditions experience illness. This UK study was qualitative and longitudinal in design. Sampling was purposive and drew upon an existing cohort study. In total, 15 older people living with multiple conditions took part in 27 in-depth interviews. The practical stages of analysis were guided by Constructivist Grounded Theory. We argue that the concept of multimorbidity as biomedically imagined has limited relevance to lived experience, while concurrency may also be erroneous. In response, we outline a lived experience of multiple chronic conditions in later life, which highlights differences between clinical and lay assumptions and makes the latter visible.

The empowered patient on a historical-rhetorical model: 19th-century patent-medicine ads and the 21st-century health subject.

The contemporary health subject, often described as a new, empowered patient, is not simply a character in a story of progress toward knowledge and power, away from credulity and passivity. Before the 20th century, and the assertion of a medical system that became frankly paternalistic, laypeople adjudicated on many matters of illness and its treatments. That is, 18th- and 19th-century health subjects were empowered too, and studying them, especially as consumers of health products, helps us develop a more nuanced account of our current medico-commercial selves. Comparing historical advertisements for "patent medicines" and contemporary direct-to-consumer ads for prescription pharmaceuticals, this essay contributes to such an account. It identifies strategies that drug marketers have deployed over centuries to persuade consumers to buy their products, and it tracks a rhetoric of interpellation in advertisements that not only address but also constitute health subjects. The goal of the analysis is to increase alertness to our own susceptibilities to pharmaceutical ads and adjacent rhetorics of health and illness.

Conducting dyadic, relational research about endometriosis: A reflexive account of methods, ethics and data analysis.

Despite a growing literature on the value of relational data in studies of social phenomena, individuals still commonly constitute the basic unit of analysis in qualitative research. Methodological aspects of interviewing couples, particularly interviewing partners separately, and of conducting dyadic analysis have received scant attention. This article describes the experience of conducting separate interviews with both partners in 22 heterosexual couples (n = 44) in a study of the impact of the gynaecological condition endometriosis. In order to advance current methodological thinking regarding interviewing couples, we describe the dyadic, relational approach employed in designing the study and our specific method of dyadic analysis. We argue that utilising separate interviews with dyadic analysis rather than conducting joint interviews, while not without its ethical, practical and analytical challenges, offers considerable methodological benefits. Such an approach allows a unique relational insight into the impact of chronic illness on couples and how they navigate chronic illness by illuminating both shared and individual interpretations, experiences, understandings and meanings.