Beyond pathology: women's lived experiences of melancholy and mourning in infertility treatment.

Throughout history, melancholy and mourning are predominantly understood within the tradition of psychopathology. Herein, melancholy is perceived as an ailing response to significant loss, and mourning as a healing experience. By taking the philosophies of Freud, Ricoeur and Kristeva together with relevant social scientific research as a theoretical framework and by drawing on women's accounts of melancholy and mourning in infertility treatment, we offer an exploration of melancholy and mourning beyond this pathological ailing/healing logic. We do so by asking what it means for women to actually live with melancholy and mourning in infertility treatment. In answering this question, we show that women in infertility treatment may have different kinds of melancholic longings: they desire their lost time as a pregnant woman, lost love life and lost future. Within these longings, women derive their sense of self predominantly from their lost past: they understand themselves as the mothers or lovers they once were or could have been. We further reveal that some of these women attempt to escape this dwelling of identity and mourn their losses by (re)narrating their pasts or through performing rituals. While these results show how melancholy and mourning are coshaped in relation to these women's embodied, temporal, sociocultural and material lived context, they also give insight into how melancholy and mourning may be understood beyond infertility treatment. We reveal how the binary dynamic between melancholy and mourning is inherently ambiguous: melancholy instigates a joyous painfulness, something that is or is not overcome through the agonising exertion of mourning. We show, moreover, that underlying this melancholy/mourning dynamic is a pressing and uncontrollable reality of not being able to make (sufficient) sense of oneself. At the end of this work, then, we argue that it follows out of these conclusions' urgency to have context-sensitive compassionate patience with those who live with melancholy and mourning.

Scientific supremacy as an obstacle to establishing and sustaining interdisciplinary dialogue across knowledge paradigms in health care and medicine.

This is a response to a short communication on our research presented in Solbrække et al. (Med Health Care Philos 20(1):89-103, 2017), which raises a series of serious allegations. Our article explored the rise of 'the breast cancer gene' as a field of medical, cultural and personal knowledge. We used the concept biological citizenship to elucidate representations of, and experiences with, hereditary breast cancer in a Norwegian context, addressing a research deficit. In our response to Møller and Hovig's (Med Health Care Philos 21(2):239-242, 2018a) opinionated piece, we start by questioning on which scientific grounds they base their knowledge claims and situate their criticism in a pre-determined positivist script, which exposes their incompetency when it comes to establishing a useful critique of our research. We tie this to an attitude of scientific supremacy, which reduces the complexity and specificity of different knowledges into a clichéd divide between 'hard evidence' and 'fiction'-presented in a predictable narrative which seeks to establish research protagonists and antagonists. We elaborate on the rationale of our qualitative approach to analyzing and interpreting situated and mediated aspects of BRCA 1/2. We counter claims that our research does harm to patients. We refer to a medical scandal emerging from Norway where 21 women were wrongfully diagnosed and surgically treated for a mis-interpreted cancer gene mutation. In conclusion, we stand by the integrity of our research as reported in the original paper. Scientific supremacy and pre-scripted criticism impose considerable obstacles for the possibility of establishing interdisciplinary dialogue across knowledge paradigms in health care and medicine. We therefore urge readers to reflect on how we can establish and sustain ethically careful and truthful dialogue-without doing violence to epistemological differences-to protect and advance the interdisciplinarity that constitutes the journal's scope.

Correction to: Scientific supremacy as an obstacle to establishing and sustaining interdisciplinary dialogue across knowledge paradigms in health and medicine.

In the original publication, the article title has been published incorrectly. Now the same has been corrected in this correction.

"It gets better. It can´t be worse than what we have been through." Family accounts of the minimally conscious state.

OBJECTIVES: The aim of this qualitative study was to explore family life when a family member is in a chronic minimally conscious state (MCS). Experiences with the health care system were also explored. METHODS: As part of a larger qualitative study of family life after a family member suffers severe physical injury, we conducted a focus group interview with five family members of three patients in a chronic MCS. The participants included three mothers, one father, and one sibling. The length of time since the brain injuries was four, four, and ten years. A thematic analysis was conducted. RESULTS: Three main themes emerged. Each family reflected on the challenges of maintaining family unity. They also revealed how they had dealt with the ambiguity and severity of the situation, including the communication with the health care system. Finally, they described their journeys back toward a normal, everyday family life. CONCLUSIONS: The findings demonstrate challenges faced by family members but also their capacity to withstand and overcome adversity. Clinicians are reminded to maintain a long-term perspective and understand the importance of helping families adjust, maintain hope for a better future, and mitigate their psychological pain.

Treatment of hemophilia: A qualitative study of mothers' perspectives.

BACKGROUND: In Norway, boys with hemophilia usually begin treatment after their first bleeding episode. Boys with severe hemophilia usually start prophylactic treatment around 18-24 months. Health professionals administer factor concentrate initially, but when boys are around 4 years old most parents start treating their children at home. There is a lack of research on how parents, and especially how carrier mothers, experience the medical treatment for their sons' hemophilia. Our aim was to investigate how carrier mothers experience this treatment in the hospital setting and at home. METHODS: In this qualitative study, we interviewed 16 mothers of boys or men with hemophilia A or B. Data were collected via semistructured interviews and analyzed using an inductive thematic analytical approach. RESULTS: Mothers experienced both practical and emotional challenges in relation to their sons' treatment, and repeated venipuncture was especially difficult emotionally. Parents preferred home treatment to hospital treatment because it was less time-consuming, less disruptive to family life, and provided a greater sense of control. Encountering healthcare professionals who were unfamiliar with hemophilia was a second major stress factor, especially when parents felt that health professionals lacked competence and were unwilling to seek advice. CONCLUSION: While home treatment for hemophilia enables freedom, flexibility, and autonomy for the boys as well as for the family, mothers may experience treatment of hemophilia as a burden. Health professionals should provide tailored practical and emotional support to parents by probing into their experiences with treating their sons' hemophilia.

"It was a lot Tougher than I Thought It would be". A Qualitative Study on the Changing Nature of Being a Hemophilia Carrier.

Studies on carriers of genetic disorders mainly focus on the process of genetic testing and reproductive choices, and less on how psychosocial aspects of being a carrier change over time. Our study sought to understand more about the psychosocial aspects of hemophilia carrier status, and thereby improve counseling aiming to advance carriers' quality of life and well-being. We analyzed 16 in-depth interviews from women who were carriers of hemophilia and had a son with hemophilia. Three themes emerged: Guilt and sorrow across generations; the choices and future consequences of genetic testing; and preparing to have a child with hemophilia. Experience with being a hemophilia carrier is a process that changes over time while feelings of guilt and sorrow run across generations. The carrier status may create "mothers-in-waiting" living at risk of having a sick child or not. The women think they are prepared to have a son with hemophilia, but experience more sadness than they expect when a son is diagnosed. Our findings suggest that health professionals, especially clinical geneticists and genetic counselors, carriers, families and patient organizations need to be aware that women's experiences of being a carrier of hemophilia changes during the biographical life course. The women may benefit from several rounds of genetic counseling at different stages of life.

Our genes, our selves: hereditary breast cancer and biological citizenship in Norway.

In this paper we explore the rise of 'the breast cancer gene' as a field of medical, cultural and personal knowledge. We address its significance in the Norwegian public health care system in relation to so-called biological citizenship in this particular national context. One of our main findings is that, despite its claims as a measure for health and disease prevention, gaining access to medical knowledge of BRCA 1/2 breast cancer gene mutations can also produce severe instability in the individuals and families affected. That is, although gene testing provides modern subjects with an opportunity to foresee their biological destiny and thereby become patients in waiting, it undoubtedly also comes with difficult existential dilemmas and choices, with implications that resonate beyond the individual and into different family and love relations. By elaborating on this finding we address the question of whether the empowerment slogan, which continues to be advocated through various health, BRCA and breast cancer discourses, reinforces a naïve or an idealized notion of the actively responsible patient: resourceful enough to seek out medical expertise and gain sufficient knowledge, on which to base informed decisions, thereby reducing the future risk of developing disease. In contrast to this ideal, our Norwegian informants tell a different story, in which there is no apparent heroic mastery of genetic fates, but rather a pragmatic attitude to dealing with a dire situation over which they have little control, despite having complied with medical advice through national guidelines and follow-up procedures for BRCA 1/2 carriers. In conclusion we claim that the sense of safety that gene testing and its associated medical solutions allegedly promise to provide proved illusory. Although BRCA-testing offers the potential for protection from adverse DNA-heritage, administered through possibilities for self-monitoring and self-management of the body, the feeling of 'being in good health' has hardly been reinforced by the emergence of gene technology.

Experiences of Being Heterozygous for Fabry Disease: a Qualitative Study.

Little is known about the experiences of women with Fabry disease. The aim of this study was to explore women's experiences of being heterozygous for Fabry disease. We used an explorative qualitative study design and selected ten Norwegian women who were known heterozygous for Fabry disease to participate. We conducted in-depth semi-structured interviews and analyzed the interviews using inductive thematic analysis. We found that learning about one's heterozygous status may be devastating for some. However, for most of the participants, heterozygous status, as well as doctors' acceptance of symptoms in women heterozygous for Fabry disease, provided an explanation and relief. Although many women did not consider themselves ill, they wished to be acknowledged as more than "just carriers." The participants were grateful for enzyme replacement therapy, although it had its burdens regarding time, planning, and absences from school or work. Women with Fabry disease felt that the lack of knowledge among healthcare professionals about Fabry disease was frustrating and worrisome. These findings suggest that healthcare professionals should acknowledge the different ways women react to their diagnosis, and be aware of the personal costs of receiving treatment.

Breast-cancer-isation explored: Social experiences of gynaecological cancer in a Norwegian context.

This article's point of departure is recent claims that breast cancer survivorship displaying positivity and self-growth represents the gold standard for all forms of cancer survivorship in English-speaking Western cultures. An interview study of Norwegian women regarding gynaecological cancer followed by hysterectomy is used to explore whether this process is taking place beyond this setting. Results show that the women's experiences of having to display survivorship in this manner are not as notable as found in English-speaking Western countries, neither is their experience of social othering. Reasons for this may be strong norms of social egalitarianism marking Norwegian culture and breast cancer informational campaigns that have not yet totally defined Norwegian norms for how to survive cancer. At the clinic and in the public sphere, however, the women experience gynaecological cancer as clearly having lower status than breast cancer, leading to a strong sense that the bodily site of their disease is taboo. Hence, as found in English-speaking cultures, the complex embodied nature of having gynaecological cancer and life beyond treatment seems to be silenced by the media and medical institutions. Finally, implications for future research and health care related to cancer survivorship are also discussed.

Between disruption and continuity: challenges in maintaining the 'biographical we' when caring for a partner with a severe, chronic illness.

Chronic obstructive pulmonary disease (COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose 'biographical we' as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers.

Family caregivers' accounts of caring for a family member with motor neurone disease in Norway: a qualitative study.

BACKGROUND: Motor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis, respiratory failure. MND care is demanding, complex and involves a variety of care tasks. Family members may experience significant and enduring strain. We conducted a qualitative study to understand more about family caregivers' work and sense of responsibility, exploring family caregivers' accounts of caring for a family member with MND. METHODS: We recruited and interviewed a total of 25 participants from Norway, including 17 current and eight bereaved family caregivers. Drawing on theories of care by Corbin and Strauss, we analysed the data by a theoretical reading of the material to identify different types of care work. RESULTS: We found that caregivers were engaged in five lines of care work that could be parallel or closely interconnected: i) immediate care work; ii) seeking information and clarity about the disease; iii) managing competing obligations; iv) maintaining normality; and v) managing external resources and assistance. Caregivers' priorities were shaped by their interactions with the person with MND, available assistive devices, the development of the illness, and utilisation of paid care. Care work had a symbolic and moral meaning for caregivers, and was associated with self-worth and respect from others. Caregivers tried to balance their own expectations and others' expectations without being overwhelmed by care work. CONCLUSIONS: A changing and potentially chaotic situation for family caregivers may compromise their capacity to utilise supportive services. Using the lines of work as a framework to assess caregivers' preferences and priorities, health professionals may tailor assistance and support to family members caring for persons with MND.

Unstable terminality: negotiating the meaning of chronicity and terminality in motor neurone disease.

This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2-5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre-scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome.

Stories of pain and health by elderly Pakistani women in Norway.

BACKGROUND: This ethnographic study investigates the stories of elderly Pakistani women living in Norway. Migration studies indicate that elderly migrant women are passive, ill victims caught in a marginalized position due to age, ethnicity and gender, and thus have little access to opposition and agency. To broaden the picture it is necessary to develop an innovative approach to understand what is implicated in the process of migration. The importance of considering life conditions that surrounds potential health promotion behaviors of immigrants is stressed by several researchers. However, up to now limited research guided by this perspective has been done in Norway. Therefore, this study explored how elderly Pakistani women in Norway promote their health and well-being through some distinct social interactions. The intention is to bring awareness to how health, even by so-called disadvantaged social groups, may take place. These practices are important to take into consideration when developing health-promoting policies for elderly immigrants. METHODS: An ethnographic study of 15 Pakistani women, aged 53-75, was carried out in a multisided fieldwork in Oslo using participant observation and ethnographic interviews. The analytical approach was inspired by the constructivist theoretical framework of narrative ethnography. RESULTS: The elderly Pakistani women in Norway construct stories of living in-between cultures and experiences of acculturative stress caused by being elderly, immigrants and women. However, this analysis also suggests that through distinct social relationships, primarily in the context of a voluntary organization, elderly Pakistani women do health by the way they interact and construct a repertoire of social identities. CONCLUSIONS: The healing practices taking place among elderly Pakistani women may counteract the negative health outcomes associated with age, migration and gender implications for immigrant health-promoting policy in Norway may be to increase the establishment and allocate funds to sustain voluntary organizations run by and for immigrants.

Becoming a cancer survivor: An experiment in dialogical health research.

The article makes cancer survivorship the topic of an experiment in a form of writing we call dialogical response. First, in the style of autoethnography, each author presents an account of her or his long-term survivorship of cancer and the issues that involves. Less conventionally, we then respond each to the other's story. The article seeks to contribute to an in-depth understanding of long-term cancer survivorship. More important, we offer it as an example of a form of writing rarely practiced in health research: speaking to those who participate in research, rather than speaking about those people. Among the multiple theoretical implications that could be explored, we consider Foucault's concept of subjectification. Our argument is that recognising the discursive formulation of the subject can and should be complemented by recognition of the local, immediate dialogical formulation of subjects. Rather than presenting research findings about cancer survivors, we offer a performative enactment of survivorship as an ongoing process of dialogical exchange. We show ourselves, responding to each other, in the process of becoming the cancer survivors we are as a result of those responses.

In/Fertile Monsters: The Emancipatory Significance of Representations of Women on Infertility Reality TV.

Reality TV is immensely popular, and various shows in this media genre involve a storyline of infertility and infertility treatment. Feminists argue that normative and constructed realities about infertility and infertility treatment, like those in reality TV, are central to the emancipation of women. Such realities are able to steer viewers' perceptions of the world. This article examines the emancipatory significance of representations of women on 'infertility reality TV shows'. While the women in these shows all have 'abnormal' qualities, we consider their portrayal as figurations of monstrosity. In the literature, monstrosity is understood as a way to challenge nonemancipatory norms by offering an alternative identity. Through a content analysis of seven reality TV shows, we identified four types of in/fertile monsters: the cyborg, the freak, the abject, and the childless. We show that these monsters are predominantly non-emancipatory as they all involve mechanisms of altering, excluding, or condemning infertility in relation to what is considered normal and acceptable womanhood. Therefore, at the end of this article, we make a plea for more diverse and emancipatory representations of infertile women in popular culture.

Becoming data. Patient perspectives on using an eTool in physiotherapy sessions.

The purpose of this investigation was to gain insights into how patients experience using an electronic tool as part of their physiotherapy assessment, goal setting, and treatment planning.The research data were generated through close observation of eight clinical encounters in primary health care, where the electronic tool was used. Observations were followed by interviews with physiotherapists and patients involved. This manuscript elaborates on the patient informants' perspectives. The analyses, inspired by postphenomenological theory and research, sheds light on patients' concerns whether reliance on what they perceive as fragmented and incomplete data generated from PROM tools will obscure health matters rather than provide health benefits.By various means, including translations, adaptions, and editing together with their physiotherapist, patients were often able to manage their data into, for them, an acceptable, recognizable form.The investigation highlights that for patients to have confidence in this technology, and particularly the methodology of PROMs, they need to trust the way data is handled and interpreted.

Rebuilding a tolerable life: narratives of women recovered from fibromyalgia.

INTRODUCTION: Fibromyalgia syndrome (FMS) is a chronic musculoskeletal pain and fatigue condition. Despite extensive research, there is currently no known therapy leading to a cure for FMS. Although studies have reported that some patients can regain their health, little is known about their personal process of becoming well. OBJEVTIVE: This study aimed to explore women's narratives about the process of recovering from FMS. METHODS: The empirical material consists of qualitative interviews of eight Norwegian women who all have previously had, but do not have FMS any more. Inspired by a narrative approach we analyzed their experiences of becoming better with a focus on recovery as a meaning-making process. RESULTS: The findings revealed a recovery process consisting of two intertwined narratives that are mutually nurturing each other. The first narrative telling moments of prompting changes refers to events during the recovery process where women understood themselves and their suffering in new ways and thereby enabled them to act in new ways or take further action. The second narrative a mundane process of rebuilding a tolerable daily life refers to a lasting, mundane everyday process of exploration how they initially should act to avoid becoming worse and, later, to promote improvement. CONCLUSION: Our findings show how the women explain their recovery in terms of overcoming fear of movement, making sense of their symptoms and becoming more active in everyday life. The close analysis reveals a recovery narrative portraying a complex and ambiguous process consisting of small dramas about the efforts trying to rebuild a meaningful life.

Physiotherapists' experiences of adopting an eTool in clinical practice: a post-phenomenological investigation.

Background and Purpose: The purpose of this investigation was to gain insights into the experience of adoption and integration of an electronic tool in physiotherapy. Case Description: The research data was generated through close observation of eight clinical encounters in primary health care, where the electronic tool was used, and then the physiotherapists were interviewed in-depth on the experience of adopting and using it. Outcomes: The analysis, inspired by post-phenomenological theory and research, reveals how physiotherapists deploy their clinical reasoning skills in an active, critical appropriation of the eTool. Despite an ambiguous attitude toward the tool, they develop an ownership to the eTool that enables them to balance and combine two modes of practice; that of collecting data for research purposes and that of treating the patient. Discussion: It seems that this ownership development is crucial to stimulate continued use of the eTool.

Ethiopian Health Care Workers' Insights into and Responses to Intimate Partner Violence in Pregnancy-A Qualitative Study.

Violence against women is a global pandemic, with the potential to spread through generations. Intimate partner violence has impacts on women's sexual, reproductive, and psycho-social health. It can occur during pregnancy and adversely affect the health of both mother and child. Health care workers involved in antenatal care can have a unique role in identifying intimate partner violence and in intervening, preventing, and mitigating its consequences. In this study, the objective was to explore Ethiopian health care workers' insights of and responses to intimate partner violence in pregnancy. Using an exploratory design, this qualitative study includes ten semi-structured interviews of health care workers representing different antenatal care centers in Jimma, Ethiopia. The content analyses of translated interview notes were conducted with Atlas.ti7 software, (Atlas.ti Scientific Software Development Gmbh, Berlin). The health care workers shared their insights of the consequences of intimate partner violence during pregnancy in addition to their experience with and responses to the victims. There was a limited understanding of the extent of the adverse impacts of intimate partner violence on pregnancy outcomes, as well as the potential long-term health implications. The informants described how they only gave medical treatment for obstetric complications or visible trauma during pregnancy. There was no formal referral to or linkages with other resources. Women's empowerment and systemic changes in the health care, including training and capacity building, clear guidelines addressing management of intimate partner violence in pregnancy, and inclusion of intimate partner violence screening tools in the Ethiopian antenatal care chart/card, were recommended by the informants. The adverse impacts of intimate partner violence on pregnancy outcomes were poorly understood by the Ethiopian health care workers in this study. They offered limited assistance to the victims and recommended changes in the routine antenatal care (ANC) and health care systems. They identified various policy initiatives focusing on women's empowerment to reduce intimate partner violence and its complications especially during pregnancy.

"I can't have it; I am a man. A young man!" - men, fibromyalgia and masculinity in a Nordic context.

Purpose: Research shows that gender has a substantial impact on the health behaviour such as expression of physical symptoms like persistent pains and aches. However, there is yet little knowledge about the gendered aspect of pain by men who suffer from typical female diseases like fibromyalgia. The purpose of the study was to elucidate the interplay between illness and gender by exploring life-stories of men who suffer from fibromyalgia. Methods: The data were collected through life-story interviews of eight men suffering from fibromyalgia. A narrative methodology for analysis was applied to explore the storytelling and the linguistic and performative aspects of the life-stories. Results: The masculine identity of the participants was re-negotiated by comparisons to other men and life before symptom onset, and by discussing expectations and beliefs of how men should act in contemporary societies. The transition from experiencing a strong, active and reliable body to experiencing a painful, vulnerable and helpless body was perceived as fundamental. Conclusions: Self-management and rehabilitation of fibromyalgia it is not only about learning to manage the symptoms but also about the struggle to find coherence in life through re-constructing gender identity that is acceptable both for the individual and for the community.