Life pushing through: Coming to writing and mining for deep reflexivity

As a researcher, three of my fields of interest have been the breast, breast cancer and death. In 2020, life interrupted as my mother phoned to say that a CT-scan had revealed a small growth in her left breast. Having just published an article on policy guidelines for the integrated breast cancer pathway, I was thrown into this pathway as next of kin, accompanying my mother through diagnosis and treatment. With life pushing through in this way, I started writing about the experience. In 2021, life interrupted again: the tumor in my mother’s breast had metastasized, her cancer is incurable. Increasingly, the writing became a lifeline for me. In this text, I develop a “creatography” to bring forth and give form to, by way of an assemblage of fragments, the struggles I’ve had with writing about this experience, as well as the pleasures I’ve had going off the beaten track. I highlight how we often have personal stories to tell about our relationships with professional research fields, yet we hesitate to give them substance or credit in our academic writing. I reflect on how we could and why we should engage in such emotional labour, while sharing my own process of coming to writing. I see this writing as an opening: to begin mining my own fields for deeper reflexivity

Mothering Death: A Psychosocial Interpretation of Breast Cancer Biography

In this article I take as my point of departure a puzzle presented by a woman who had an apparently ‘bizarre’ reaction to a breast cancer diagnosis. In the clinic, she had exclaimed: “I would rather die than lose the breast!”. My aim is to unpack layers in this woman’s embodied and enculturated experience, with a view towards developing a psychosocial interpretation of breast cancer biography. The single case on which the present study is based, was extracted from a larger longitudinal data set which allowed me to follow ‘Ella’s’ transition from diagnosis to survivorship. I relied on five sources of data to unfold the case: two participant-generated texts (expressive writing and a Breast Biography), two interviews, and my own field notes. The two texts that Ella wrote provided a participant-led frame for depth-hermeneutic group interpretation sessions, the first of which, synergistically, produced a scenic voicing of latent content in the sub-text of Ella’s expressive writing: the fantasy of mothering death. This subsequently became a lead for my further interpretation of the case, and for methodological reflections on the value of shared thinking in qualitative data interpretation. Crucially, and with some bearing on the current healthcare context, this interpretive study sheds light on what goes on beneath the surface of an apparently ‘irrational’ and ‘recalcitrant’ patient, evidenced by Ella’s entry into what I call a ‘vortex of suffering’. Findings point towards her suffering as an expression of a psychosocial reality, against the backdrop of hope and ideals contained within a psychosocial imaginary that revolves around biomedical cure and reparation.   Keywords: breast cancer biography; the breast; psychosocial studies; depth-hermeneutics; vortex of suffering; psychosocial realit

Mothering Death: A Psychosocial Interpretation of Breast Cancer Biography

In this article I take as my point of departure a puzzle presented by a woman who had an apparently ‘bizarre’ reaction to a breast cancer diagnosis. In the clinic, she had exclaimed: “I would rather die than lose the breast!”. My aim is to unpack layers in this woman’s embodied and enculturated experience, with a view towards developing a psychosocial interpretation of breast cancer biography. The single case on which the present study is based, was extracted from a larger longitudinal data set which allowed me to follow ‘Ella’s’ transition from diagnosis to survivorship. I relied on five sources of data to unfold the case: two participant-generated texts (expressive writing and a Breast Biography), two interviews, and my own field notes. The two texts that Ella wrote provided a participant-led frame for depth-hermeneutic group interpretation sessions, the first of which, synergistically, produced a scenic voicing of latent content in the sub-text of Ella’s expressive writing: the fantasy of mothering death. This subsequently became a lead for my further interpretation of the case, and for methodological reflections on the value of shared thinking in qualitative data interpretation. Crucially, and with some bearing on the current healthcare context, this interpretive study sheds light on what goes on beneath the surface of an apparently ‘irrational’ and ‘recalcitrant’ patient, evidenced by Ella’s entry into what I call a ‘vortex of suffering’. Findings point towards her suffering as an expression of a psychosocial reality, against the backdrop of hope and ideals contained within a psychosocial imaginary that revolves around biomedical cure and reparation.publishedVersio

Silence about encounters with dying among healthcare professionals in a society that ‘de-tabooises’ death

Background: Empirical studies on healthcare personnel indicate that professionals’ experiences with dying and death become silenced and unutterable within the healthcare service. Aim: To explore and interpret silence about encounters with death and dying among healthcare professionals in Norway. Method: The method used was theoretical exploration, using a psychosocial approach. Findings: This analysis reveals complex interrelations and two-way dynamics between subject-worlds, sociocultural and societal worlds when it comes to dealing with death and dying at work. A performance culture saturates these worlds, and may be implicated in silencing death within the healthcare institutions of the Norwegian welfare state. Conclusions: This article suggests that silence about death and dying among healthcare professionals is indicative of crucial emerging and unresolved tensions in the neoliberal episteme, accompanied and reinforced by the ineluctable basic conditions of life and intrapsychic defence against threats towards the self. Implications for practice: •Silence about death and dying presents a serious challenge for dying patients and next of kin. Healthcare professionals should be enabled to acknowledge their thoughts and emotions about death in order to be able to support and contain patients and next of kin •Learning activities such as peer support and supervision can help the processing of difficult psychological content and allow for emotional aspects of professionals’ work to be acknowledged and thought about in a way that encourages reflective and sound practice •Clinical managers should address whether performance pressures induce shameful feelings in staff, who may believe that by providing appropriate levels of care they are compromising productivity. Shame in turn, may undermine professionals’ emotional wellbeing and ability to continue to provide attuned and adequate care for dying patients •Creative approaches to facilitate reflection on this difficult topic could be encouraged by introducing death as a cultural trope (for example, by the symbolic use of art, literature, music) into clinical contextspublishedVersio

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

This is a post-peer-review, pre-copyedit version of an article published in "Medicine, Health Care and Philosophy". The final authenticated version is available online at: http://dx.doi.org/10.1007/s11019-016-9737-y.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.acceptedVersio

Ethics of care in technology-mediated healthcare practices: A scoping review

Background Introducing new technologies into healthcare practices may challenge professionals' traditional care cultures. The aim of this review was to map how the ‘ethics of care’ theoretical framework informs empirical studies of technology-mediated healthcare. Method A scoping review was performed using eight electronic databases: CINAHL with full text, Academic Search Premier, MEDLINE, the Philosopher's Index, SocINDEX with Full Text, SCOPUS, APA PsycInfo and Web of Science. This was followed by citation tracking, and articles were assessed against the inclusion criteria. Results Of the 443 initial articles, 18 met the criteria and were included. We found that nine of the articles used the concept of ‘ethics of care’ (herein used interchangeably with the terms ‘feminist ethics’ or ‘relational ethics’) insubstantially. The remaining nine articles deployed care ethics (or its equivalent) substantially as an integrated theoretical framework and analytical tool. We found that several articles suggested an expansion of ethics of care to encompass technologies as part of contemporary care. Furthermore, ethics of care contributed to the empirical research by recognising both new relationships between patients and healthcare professionals as well as new ethical challenges. Conclusion Ethics of care is sparsely used as a theoretical framework in empirical studies of technology-mediated healthcare practices. The use of ethics of care in technology-mediated care brings new dilemmas, relational tensions and vulnerabilities to the foreground. For ethics of care to be used more explicit in empirical studies, it is important that it is recognised by research community as an adequate, universal ethical theory.publishedVersio

CARING FUTURES: a study protocol for transdisciplinary qualitative research on technology-mediated care practices and theory development for ethics of care

Introduction The world’s population is ageing. As older persons live longer and increase in number, society faces a greater disease burden and, in public welfare, a corresponding resource deficit. New technology is one solution to this deficit but there is scarce knowledge about ethical aspects of such innovations in care practices. In CARING FUTURES, we address this scarcity by interrogating how new technology in care can become ethically sound and, correspondingly, how ethics of care can become more technology aware. Our concern is to protect quality care for the future. Methods and analysis CARING FUTURES advances transdisciplinarity through knowledge exchange around technology-mediated care and ethics of care, involving key stakeholders. We rely on established and innovative methods to generate experience-near and practice-near knowledge. Through this empirical research, we seek to expand understanding of technology-mediated care and to enrich ethics of care theory. Ethics and dissemination Empirical studies have been approved or await approval by national ethics committees. CARING FUTURES is designed to create societal impact through Knowledge Transfer Events targeting stakeholders in health, care and welfare, and Educational Packages for students of care—providing knowledge-exchange forums for future academics and practitioners of care. The project’s societal impact is also ensured in that participating researchers are also practitioners and/or educators of care personnel for the future. Project findings will be disseminated through scientific publications and conference presentations. Through communication in both traditional and digital media platforms, we engage in dialogues between researchers, user groups, policy makers and the wider public.publishedVersio

Ekspressiv skriving som egenterapeutisk verktøy ett år etter brystkreftdiagnosen - resultater fra en norsk pilotstudie

Expressive writing as a self-help tool one year after the breast cancer diagnosis – results from a Norwegian pilot studyThe article presents findings from a pilot study on expressive writing, a therapeutic method undescribed in a Norwegian scientific context. Objective: 1. Gain qualitative data on breast cancer women’s experiences with expressive writing. 2. Evaluate the intervention’s feasibility, based on participants’ experiences of the instruction, procedure, and circumstances for writing. Method & design: The study has an exploratory descriptive design. Data collection was achieved through in-depth interviews, followed by experiential thematic analysis of transcripts. Results: Two women enrolled, participating in writing/interviews. Analysis revealed three themes: "The experience of the writing process", "Writing as working through and work to clear the mind", "Strength and vulnerability in relation to others". Conclusion: Findings reveal that expressive writing was experienced as achievable for two breast cancer women, one year after diagnosis. Writing provided an opportunity to work through, and sort out, feelings and thoughts connected to participants’ lives and illness experiences. The instruction was evaluated as easy to understand and inspiring. The women became absorbed in electronic writing in their own homes. They both recommended expressive writing for other women with breast cancer, especially in the period after initial diagnosis

Psychosocial and symbolic dimensions of the breast explored through a Visual Matrix

This article explores knowledge about the breast in the psychosocial interplay of lived experience, addressing a gap in empirical research on this highly gendered cultural trope and embodied organ. We present findings from a study that used a free-associative psychosocial method – the Visual Matrix – in order to stimulate, and capture expressions of, tacit aspects of the breast that have evaded discursive representation, as well as to generate understanding of relations between embodied and enculturated experience. Little research has been conducted on women’s affirmative experience of breasts, possibly because their bio-psycho-sociocultural complexity affords an onto-epistemological and empirical challenge. Our data revealed how an aesthetic of the grotesque in one matrix allowed the mainly female group to use humour as a “creative psychic defence” against culturally normative and idealised aspects of the breast. This was expressed through sensual symbolisations of breasted experience, affectively delivered with exuberance and joy. There was an emphasis on the breast’s potency and its potential for both abundant nurturance and potent “weaponisation”. By establishing this feminine poetic mode, Visual Matrix imagery symbolised life and death as tolerable, inseparable yet ambiguous dimensions of breasts, thereby resisting anxious splitting. The breast’s life-affirming qualities included the sensual, the visceral and the joyful – a materialsemiotic knowing. This was in marked contrast to a second matrix where associations were weighted towards the spectacular breast of an ocular-centric culture that privileges heteromasculine looking. This matrix reflected a more ambivalent and sometimes troubled response among participants. Reasons for the difference between the two matrices are discussed in terms of how they responded to the tension between embodied and enculturated experiences