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.

Approaching Empowerment Holistically: are Physicians Willing And Able?

Patient empowerment is evident nowadays through the increased role undertaken by patients in the evaluation of healthcare, shaping health policy and involvement in clinical research. But are physicians willing and able to empower their patients? The biopsychosocial model offers a holistic approach to care by including the subjective experience of illness into clinical processes. Within this context, effective communication is key as it can contribute towards better clinical outcomes for patients as well as protect physicians from burnout due to emotional exhaustion. Hematological malignancies are the focus of this contribution as their nature and management pose serious challenges for patients to understand and physicians to explain. Physicians can play a pivotal role in encouraging patients' empowerment by educating them about their illness, supporting them in self-management and involving them in their care. Communication skills training, availability of consultation tools and e-health applications can support physicians in their new role.

Developing post-ableist music therapy: An autoethnography exploring the counterpoint of a therapist experiencing illness/disability

<p>This PhD examined a therapist’s experience of illness/disability to see if any new light could be shed on music therapy whilst also finding ways to navigate disability as a practitioner. There has not been adequate research attention given to the experiences of music therapists who have an illness/disability. The position is often negotiated in isolation with minimal tools and resources. An arts-based autoethnography was used to determine how the close examination of one’s personal experience with illness/disability can impact on practice, how the work can be negotiated, and to uncover any new practical or theoretical meanings. Furthermore, it looked to determine what arts-based autoethnography could offer one’s practice. A poststructural lens was used that drew on social constructionism, feminism, and the work of Michel Foucault. Data generated from a music therapist’s practice, experiences of illness/disability, literature, and professional documents were analysed using Foucault’s “critical ontology of ourselves” (Foucault, 1984b, p. 47). Hidden processes of problematic ableism were found within the practice examined as well as in some educational and professional encounters. These regimes of ableism were supported by universalising and dichotomising discourses, namely humanism, western normativity, limited observable understandings of disability, and the enforcement of able/disabled divide through many binaries. The methodology provided the tools to reposition the practice to politicise disability and address ableism. Addressing ableism was found to be more complex than simply incorporating disability issues into existing contemporary frameworks. The analysis led to the development of Post-Ableist Music Therapy (PAMT). PAMT extended the relational ethic beyond what was present in the prior practice by drawing on aspects of posthumanism, agonistic plurality, and increasing the visibility of disability studies and crip theory. Therefore, PAMT offers a different lens to the critical orientations’ apparatus: a social justice practice not based on empowerment and humanism but on agonism and posthumanism instead. As there is a lag in the theorisation of ableism, PAMT provides an alternative framework that can be applied to current approaches to increase our professional consciousness of ableism. By repositioning the practice and exploring alternative subjectivities, the professional and personal narratives of a therapist experiencing illness/disability became more integrated, working with–not against–each other in a shared activism. The methodology fostered an increased ethical care of the self; offered tools that critiqued what we are; experimented with going beyond the limits imposed on us. The use of such tools could have wider application in the everyday practices of therapists. The findings have significant implications for practice and training, as the challenges people and societies face cannot be adequately dealt with without tools to explicitly uncover and address normalisation and ableism.</p>

Developing post-ableist music therapy: An autoethnography exploring the counterpoint of a therapist experiencing illness/disability

<p>This PhD examined a therapist’s experience of illness/disability to see if any new light could be shed on music therapy whilst also finding ways to navigate disability as a practitioner. There has not been adequate research attention given to the experiences of music therapists who have an illness/disability. The position is often negotiated in isolation with minimal tools and resources. An arts-based autoethnography was used to determine how the close examination of one’s personal experience with illness/disability can impact on practice, how the work can be negotiated, and to uncover any new practical or theoretical meanings. Furthermore, it looked to determine what arts-based autoethnography could offer one’s practice. A poststructural lens was used that drew on social constructionism, feminism, and the work of Michel Foucault. Data generated from a music therapist’s practice, experiences of illness/disability, literature, and professional documents were analysed using Foucault’s “critical ontology of ourselves” (Foucault, 1984b, p. 47). Hidden processes of problematic ableism were found within the practice examined as well as in some educational and professional encounters. These regimes of ableism were supported by universalising and dichotomising discourses, namely humanism, western normativity, limited observable understandings of disability, and the enforcement of able/disabled divide through many binaries. The methodology provided the tools to reposition the practice to politicise disability and address ableism. Addressing ableism was found to be more complex than simply incorporating disability issues into existing contemporary frameworks. The analysis led to the development of Post-Ableist Music Therapy (PAMT). PAMT extended the relational ethic beyond what was present in the prior practice by drawing on aspects of posthumanism, agonistic plurality, and increasing the visibility of disability studies and crip theory. Therefore, PAMT offers a different lens to the critical orientations’ apparatus: a social justice practice not based on empowerment and humanism but on agonism and posthumanism instead. As there is a lag in the theorisation of ableism, PAMT provides an alternative framework that can be applied to current approaches to increase our professional consciousness of ableism. By repositioning the practice and exploring alternative subjectivities, the professional and personal narratives of a therapist experiencing illness/disability became more integrated, working with–not against–each other in a shared activism. The methodology fostered an increased ethical care of the self; offered tools that critiqued what we are; experimented with going beyond the limits imposed on us. The use of such tools could have wider application in the everyday practices of therapists. The findings have significant implications for practice and training, as the challenges people and societies face cannot be adequately dealt with without tools to explicitly uncover and address normalisation and ableism.</p>

Medical Humanism or Scientia Sexualis? Building a Sexological Concept in Fécondité

This article argues that Zola's late novel Fécondité, while on the surface a transparently didactic roman à thèse articulating populationist concerns, is in fact at the same time a roman de mœurs implicated genealogically in a broader range of issues than pro-natalist ethics and various behavioural and therapeutic bêtes noires, containing identifiable traces of other contemporary pathological concerns, contingently marshalled for pro-natalist ends. Exploiting the terminological flexibility of what Peter Cryle and Alison Moore have referred to as a long-established ‘constellation of themes’ constituted by ‘impotence, frigidity and sterility’, Fécondité participates in the fin-de-siècle production of a key sexological concept. It does so through relentless deployment of the malleable motif of female sexual coldness – a signifier of pathological conditions named in contemporary medical and pseudo-medical literature as ‘frigidité’, ‘froideur’, and so on – and its polyvalent application to distinct pathologies manifesting in a variety of its female characters, in particular inabilities to desire, to conceive, and, significantly, to climax. Zola's novel appears at a moment where women's sexual pleasure was becoming normalised, to the extent that its absence now counted as a pathological disorder; Fécondité deploys tropes of coldness – consequential upon anti-reproductive practices – to suggest that it is attempted disruption of the natural reproductive order that ensures such disordered absence. Ultimately, while Fécondité is readable as didactic expression of a ‘humanitarian’ natalist ethics and representation of doctor-patient encounters, treatment, experience of illness and other ‘medical humanities’ concerns, it is however important not to overlook this representation's discursive contingencies, particularly the coalescence of sexological and populationist concerns at a moment when both were of considerable significance. Fécondité in this sense straddles two major fin-de-siècle discursive economies, offering an ideal object for a critical medical humanities valuing the pathological as well as the pathographical.

The Concerns of Pakeha Men Living on Home Haemodialysis: a Critical Interpretive Study

<p>This nursing study seeks to understand the experience of one group of people with chronic renal failure using renal replacement therapy, Pakeha men living on home haemodialysis. It is based on the assumptions that people living on dialysis have distinctive experiences that are characterized by common concerns reflecting their shared position as subjects of renal illness and therapy, but that these are not easy to discern because they are obscured by the professional viewpoint that is dominant in the renal setting. In order to understand the experience of people living on dialysis this study develops a critical interpretive approach, seeking the participant's own interpretation of their individual experiences, but then reinterpreting them from a critical standpoint, recognizing that they can only be adequately understood by contextualizing them, in order to discern the common perspective underlying them in contrast to the dominant professional viewpoint in the renal setting. Using some ideas derived from the thought of Michel Foucault this study develops a critical nursing view of the renal setting, as a specialized healthcare context that is constituted by several interrelated discourses, primarily the dominant professional discourse, but also by several other discourses, in particular a client discourse that is a response to the dominant discourse. The different discourses reflect contrasting perspectives based on the different positions of various groups within the renal context. The study presents accounts, derived from interviews, of the experience of six Pakeha men living on home haemodialysis. Reflecting on these accounts as a set, by contextualizing them in terms of the critical nursing view of the renal setting, I outline four concerns of Pakeha men living on home haemodialysis. Together these make up the renal client discourse that models the distinctive perspective from their position within the renal context, underlying each of their individual accounts of their experience of illness and therapy. These concerns include symptoms from chronic renal failure and dialysis, limitations resulting from the negotiation of the therapeutic regime into their lifestyle, their sense of ongoingness and uncertainty of living on dialysis, and the altered interrelationship between autonomy and dependence inherent in living on dialysis. The study suggests that the individual accounts can be understood as resulting from the interaction of the various dimensions of their own personal social locations, including their gender and ethnicity, with the concerns of client discourse, reflecting their common position as people living on dialysis. One important implication of this understanding is that the role of nursing in the renal setting can be articulated as a response to the experience of the person living on dialysis. The nurse can support the renal client in seeking to integrate the requirements of the therapeutic regime, reflecting the dominant discourse, into their personal situation, reflecting the interaction of their own personal location with their position as a person living on dialysis, outlined in the client discourse.</p>

The Concerns of Pakeha Men Living on Home Haemodialysis: a Critical Interpretive Study

<p>This nursing study seeks to understand the experience of one group of people with chronic renal failure using renal replacement therapy, Pakeha men living on home haemodialysis. It is based on the assumptions that people living on dialysis have distinctive experiences that are characterized by common concerns reflecting their shared position as subjects of renal illness and therapy, but that these are not easy to discern because they are obscured by the professional viewpoint that is dominant in the renal setting. In order to understand the experience of people living on dialysis this study develops a critical interpretive approach, seeking the participant's own interpretation of their individual experiences, but then reinterpreting them from a critical standpoint, recognizing that they can only be adequately understood by contextualizing them, in order to discern the common perspective underlying them in contrast to the dominant professional viewpoint in the renal setting. Using some ideas derived from the thought of Michel Foucault this study develops a critical nursing view of the renal setting, as a specialized healthcare context that is constituted by several interrelated discourses, primarily the dominant professional discourse, but also by several other discourses, in particular a client discourse that is a response to the dominant discourse. The different discourses reflect contrasting perspectives based on the different positions of various groups within the renal context. The study presents accounts, derived from interviews, of the experience of six Pakeha men living on home haemodialysis. Reflecting on these accounts as a set, by contextualizing them in terms of the critical nursing view of the renal setting, I outline four concerns of Pakeha men living on home haemodialysis. Together these make up the renal client discourse that models the distinctive perspective from their position within the renal context, underlying each of their individual accounts of their experience of illness and therapy. These concerns include symptoms from chronic renal failure and dialysis, limitations resulting from the negotiation of the therapeutic regime into their lifestyle, their sense of ongoingness and uncertainty of living on dialysis, and the altered interrelationship between autonomy and dependence inherent in living on dialysis. The study suggests that the individual accounts can be understood as resulting from the interaction of the various dimensions of their own personal social locations, including their gender and ethnicity, with the concerns of client discourse, reflecting their common position as people living on dialysis. One important implication of this understanding is that the role of nursing in the renal setting can be articulated as a response to the experience of the person living on dialysis. The nurse can support the renal client in seeking to integrate the requirements of the therapeutic regime, reflecting the dominant discourse, into their personal situation, reflecting the interaction of their own personal location with their position as a person living on dialysis, outlined in the client discourse.</p>

Epistemic injustice in the age of evidence-based practice: The case of fibromyalgia

The aim of this paper is to analyze epistemic interactions in healthcare practices. In clinical encounters, participants exchange and interpret knowledge. Patients suffering from fibromyalgia often report that healthcare professionals do not take their testimonies and interpretations seriously. Such experiences will be explored using the concept of epistemic injustice. Epistemic injustice is wrong done to someone in their capacity as a knower. In healthcare settings, epistemic injustice occurs when patients experience an unjustified discrediting as unreliable informants of their own illness experiences. First, we will argue that patients’ epistemic marginalization can be reframed as an epistemological problem. There is a gap between patients’ lived experience of illness and professionals’ conceptualization of illness as disease. This gap leads to two distinct conceptualizations, possibly causing harm to patients’ capacity as first-hand knowers. Second, we will analyze epistemic injustice in light of the dominant model of knowledge translation in medicine and healthcare, namely evidence-based practice (EBP). EBP intends to diminish the gap between scientific knowledge and clinical practice. EBP prioritizes knowledge obtained through clinical research over other forms of clinical knowledge and has the potential for harmful epistemic devaluation of patients’ stories.

Intimacy and its violation: on the experience of illness in contemporary women's poetry

This article discusses selected aspects of the problem of self-perception by a sick individual, specific to the poetry of Polish women of the last few decades. The aim of the analysis is to show that the body is central to the illness experience and that a new type of intimacy appears in connection with its ailment. This is a „clinical intimacy”, the specificity of which is defined by a confrontation with suffering, the proliferation of the feeling of isolation, the intensity of emotions related to making the body public, its discovery and exposure in a hospital setting. The issue of „gender expropriation” in a marginal situation is also important, as is the scar, wound, physical violation of the body boundary, read as the „punctum” of the patient's body. The interpretation emphasises the individualization of artistic representations of the aforementioned aspects of „clinical intimacy”. The anthropological research perspective adopted in the sketch allows for the diagnosis of the subject matter in the context of the process of shaping subjective identity.