Un-tracking menopause: How not using self-tracking technologies mediates women's self-experiences in menopause.

Self-tracking in general, and by women in particular is increasingly researched. In the literature, however, women's interactions with selftracking technologies in menopause-a change that (almost) every woman will go through-is largely taken for granted. This paper addresses this lacuna by asking whether and how menopausal women use self-tracking technologies, and how this (non-) usage mediates their self-experiences. In doing so, it elaborates on another understudied phenomenon: the constitutive significance of "un-tracking"-that is, of various shades and levels of not using self-tracking technologies-in menopause. Most of the 13 interviewed women in this study reported that they stopped, drastically reduced, or resisted self-tracking in menopause. By framing the discussion of these accounts of "un-tracking" within the tradition of post-phenomenology and a phenomenology of situated bodily self-awareness, we show that these women experience their bodies as (1) wise and eu-appearing, (2) unmoldable and dysappearing, and (3) longing for disappearance. Herein, their experientially mediating un-tracking practices are temporally and socio-culturally contextualized in complex ways and bear substantial existential significance. This study establishes the potential harmful ways in which self-tracking mediates self-experiences, as well as the fruitful ways in which un-tracking may do so. Against the background of this observation, this paper makes an appeal to take a step back from uncritically celebrating self-tracking in healthcare contexts, and critically evaluates whether (the promotion of) using (more) self-tracking technologies in these contexts is desirable to begin with.

Navigating severe chronic cancer-related fatigue: an interpretative phenomenological analysis.

OBJECTIVE: This article presents a phenomenological study on the embodied experiences of patients with Chronic Cancer-Related Fatigue (CCRF), aiming to better understand this complex phenomenon. DESIGN: Data collection consisted of individual interviews with 25 participants who suffered from severe CCRF for at least three months after cancer treatment was finished. MAIN OUTCOME MEASURES: Against the theoretical background of philosophical phenomenology, we explored embodied experiences, incorporated temporal and spatial aspects of living with CCRF. We applied interpretative phenomenological analysis (IPA) to analyze the transcripts of the interviews. RESULTS: Using IPA, we identified four themes on how chronic fatigue is experienced post-cancer: (1) Worn out; (2) Diminishment of one's 'I can'; (3) Invisibility; and (4) Regaining one's 'I can'. CONCLUSION: For clinical practice, these results imply that professionals could focus more on the role of the body and limitations of one's 'I can' when treating CCRF. By studying these embodied CCRF experiences in individual patients, future research could help personalize and optimize treatment.

ShareHeart: A patient journey map of patients with ischemia and non-obstructive coronary artery disease based on qualitative research.

AIMS AND OBJECTIVES: To visualise the health care experiences and needs of patients with ischemia with non-obstructive coronary arteries in a patient journey map. As such, future design challenges can be provided, and it can be used for future healthcare optimization. BACKGROUND: Ischemia with non-obstructive coronary arteries is a chronic cardiac condition caused by vascular dysfunctions. Ischemia with non-obstructive coronary arteries is often unrecognised, significantly impairs daily functioning, and is more prevalent among women. Patients' experiences remain unexplored, and a clear patient-centered care pathway is lacking. DESIGN: A qualitative interpretative research design was performed and the standards for reporting qualitative research (SRQR) has been used. METHODS: In total, 36 women were included and participated in eight semi-structured focus group interviews. Thematic analysis was used, and identified themes were further classified using 'patient journey mapping.' Additionally, Picker's 'eight principles of patient-centered care' were linked to the results and integrated in the patient journey map. RESULTS: Participants experienced a lack of familiarity with the specific cardiac condition by healthcare providers, repeated hospitalisation, testing and referrals, shortage of specialised cardiologists, and feelings of not being heard. In addition, needs for a multidisciplinary treatment program (including physical and psychological support), better information provision, and an easily accessible contact person were expressed. CONCLUSIONS: The resulting patient journey map shows how patients experienced and interacted with the current healthcare system. Overall, the results show a complex and long healthcare pathway and important themes for healthcare experiences and needs were identified. Future research could focus on the development and implementation of a patient-centered evidence-based clinical pathway optimising experiences and quality of life. RELEVANCE TO CLINICAL PRACTICE: The visual tool can help health care professionals, policy makers, and researchers improve healthcare provision which is patient-centered and tailored to the preferences of patients with ischemia with non-obstructive coronary arteries.

The Analgesic Museum.

This manuscript uses the perspectives and insights that emerged from the Analgesic Museum conference held virtually on March 11, 2022 as a mechanism for considering the role museums and artists can play in the public health effort to reduce the burden of persistent pain. One hundred and fifty-seven individuals from 22 countries registered for the Analgesic Museum conference. The event explored the intersection of art and pain management practices with presentations centered on three domains of interest: exhibition development, arts experiences and practices, and research and creative scholarship.

Using smartphone-based ecological momentary assessment and personalized feedback for patients with chronic cancer-related fatigue: A proof-of-concept study.

Introduction: Chronic cancer-related fatigue (CCRF) is a complex multidimensional problem warranting person-centered care. Providing patients and therapists personalized feedback based on network analysis applied to ecological momentary assessment (EMA) data could facilitate case conceptualization in psycho-oncological care. The aim was to explore patients' and therapists' experiences of using an EMA app and personalized feedback based on network theory to aid case conceptualization in psycho-oncological care. Methods: A n = 5 proof-of-concept study was implemented in routine psycho-oncological care. We purposively selected adult cancer patients suffering from severe CCRF who were on the waitlist for psycho-oncological care. During a 3-week period participants filled out the EMA app Energy InSight (fatigue, mood, activity, responding, and context) five times a day. Participants received a descriptive and network feedback report, which they reflected upon during the first therapy sessions. Thematic analysis was used to analyze user experiences. Results: Patients experienced that filling out the Energy InSight app, as well as receiving descriptive and network-based personalized feedback provided them with insight into their CCRF. Although therapists experienced the discussion of network feedback as challenging, it facilitated the case conceptualization. Discussion: Using EMA during waitlist for psychological care seemed feasible. Patients experienced beneficial effects from filling out the EMA app and talking over the personalized feedback reports, which in turn aided case conceptualization and personalized care. Based on this evaluation, an improved version of the Energy InSight app and a therapist training for providing network feedback is developed for implementation in psycho-oncological care.

Chronicling the chronic: narrating the meaninglessness of chronic pain.

This article proposes a way of narrating chronic pain: the telling of a chronicle Recent work in the medical humanities has been critical of traditional approaches to illness narratives. In line with this criticism, we argue that the experience of chronic pain resists internally coherent, plot-driven-in other words, Aristotelian-narrative. Drawing on phenomenological studies, we state that chronic pain is an utterly meaningless experience due to its relentless continuation over time. It therefore defies any narrative search for a higher meaning or purpose as well as the search for a coherent and progressive 'plot'. However, we reject the idea that chronic pain could therefore only be captured in the form of a meaningless, unshareable and chaotic anti-narrative. Instead, we propose that chronic pain could be borne witness to through the speech act of chronicling-an ongoing telling about ongoing suffering. Building on work of contemporary philosophers Philippe Lacoue-Labarthe and Jean-Luc Nancy, we examine what the chronicle entails by touching on three themes: time, meaning, and the body. First, we argue that chronicling allows people to bear witness to chronic pain's purposeless continuation over time, thereby affirming the utter meaninglessness of the experience. Second, we argue that it is precisely in the affirmation of this meaninglessness that a different kind of meaning can be experienced: a meaning which cannot be detached from the sensory experience of telling and listening itself. Third, we examine how chronicling chronic pain could allow the muted and painful body to once again meaningfully express itself to others.

Multiplicidade e instabilidade ontológica nos corações não-humanos / Multiplicity and ontological instability in nonhuman hearts

Resumo O artigo reflete sobre as relações entre corpos biológicos e artefatos tecnológicos, a partir da pesquisa etnográfica sobre o desenvolvimento de tecnologias de assistência circulatória, conhecidas como corações artificiais. Para compreender as corporeidades que tais dispositivos mecânicos ajudam a produzir, buscamos aqui caracterizar dois tipos de corpos instituídos a partir de práticas médicas e biotecnologias projetadas para pacientes com insuficiência cardíaca avançada. Os corpos imunológicos, produzidos a partir dos transplantes de coração, serão contrastados aos corpos biônicos, compostos pelo arranjo com corações artificiais. Propomos que é preciso considerar que cada uma dessas tecnologias se coproduz com distintas naturezas, sustentadas em materialidades, práticas, moralidades e pressupostos específicos. A atenção dada às práticas e à materialidade permitirá destacar os diversos entrelaçamentos materiais-semióticos. Resgatar a trajetória de desenvolvimento desse campo nos permitirá explorar o imaginário a partir do qual tais intervenções emergem, assim como as transformações ocorridas, ressaltando o vínculo ao corpo-máquina tecido no âmbito biomédico.

Abstract This paper reflects on the relationship between biological bodies and technological artifacts, based on ethnographic research on the development of circulatory assist technologies, known as artificial hearts. To understand the embodiment that such mechanical devices help to produce, we aim to characterize two types of bodies enacted from medical practices and biotechnologies designed for patients with advanced heart failure. The immunological bodies, produced from heart transplantation, will be contrasted with the bionic bodies, composed of the assembly with artificial hearts. We propose that it is necessary to consider each of these technologies as co-produced with different natures, supported by specific materialities, practices, moralities and assumptions. The attention given to practices and materiality will allow to highlight the various material-semiotic intertwinings. Tracing the development trajectory of this field will allow exploring the imagination from which such interventions emerge and the transformations that have occurred, emphasizing the link to the body-machine woven in the biomedical scope.

Forming new habits in the face of chronic cancer-related fatigue: An interpretative phenomenological study.

PURPOSE: The growing group of patients who suffer from chronic cancer-related fatigue (CCRF) after cancer have helpful and less helpful ways of responding to this long-lasting and disruptive problem. This qualitative study aimed to gain insight in essential elements of how patients respond to CCRF, with a focus on helpful responses to facilitate adaptation. METHODS: We conducted semi-structured interviews with a purposive sample of 25 participants who experienced severe CCRF for at least 3 months. Participants were recruited via media, patient associations, meetings, and health professionals until data saturation was attained. We used a topic guide with open-ended questions about lived experiences. Interpretative phenomenological analysis (IPA) was used for analysis of the transcripts. RESULTS: We identified five interrelated themes of how patients respond to CCRF: (1) discovering physical and emotional boundaries; (2) communicating support needs; (3) reorganizing and planning activities and rest; (4) letting go of one's habitual identity; and (5) recognizing and accepting CCRF. CONCLUSION: This study highlights the development of new habits and positive beliefs in the face of CCRF and the importance of (social) support in this process. This experiential knowledge on helpful responses can be used to inform patients and their significant others and improve self-efficacy. Health professionals could use these insights to improve recognition of CCRF and personalize treatment.

Gut feelings: depression as an embodied and affective phenomenon in Houellebecq's Serotonin.

Current debates about the possible causes of depression reinforce the age-old body-mind dualism: while some claim that depression is caused by psychological or societal stress, others underline that it results from a shortage of the neurotransmitter serotonin in the central nervous system. This paper shows that Michel Houellebecq's latest novel Serotonin can be read as an account of depression that goes beyond this body-mind dualism. Moreover, we will argue that his way of narrating invites us to reconsider the restorative power of narrative in 'pathography,' a genre that is a primary focus within medical humanities. The first section of the paper discusses, while drawing on Wilson's work on new materialism, that although the title of the novel Serotonin may suggest that Houellebecq takes sides with those who believe that depression is a brain disease, the protagonist of the novel suffers mainly from his gut feelings, which affects his entire embodied existence. Against the background of Merleau-Ponty's philosophy, the second section specifies this existential disruption in terms of an embodied 'I cannot.' In the third section, we make clear how Houellebecq's way of narrating-plotless and episodic-reinforces these embodied feelings of incapacity. The final section, then, traces how Houellebecq, by means of his style of writing and his choice of themes, succeeds in transferring gut feelings onto the reader. If illness narratives aim at sharing experiences of illness, the 'narrative' of depression, so we argue, had better take the form of an anti-narrative or a chaos story. Indeed, Houellebecq's anti-narrative succeeds in passing on to the reader the experience of a debilitating gut feeling, and a gradual loss of grip that manifests itself as a temporal and spatial disorientation.

Experiencing and responding to chronic cancer-related fatigue: A meta-ethnography of qualitative research.

OBJECTIVE: One of the most prevalent and disrupting symptoms experienced by cancer patients is chronic cancer-related fatigue (CCRF). A better understanding of the chronic nature of CCRF can provide valuable insights for theory and practice. The purpose of this meta-ethnography was to derive an overarching interpretative narrative on patients' experiences and responses to CCRF. METHODS: We conducted a comprehensive systematic literature search in five databases (05-03-2018). In addition, papers from reference lists were retrieved. Two researchers independently screened the papers for eligibility and appraised quality (CASP-criteria). We followed the seven phases of meta-ethnography to extract, translate, and synthesise first-order constructs (ie, patients' views) and second-order constructs (ie, authors' views) from the selected studies into third-order constructs (ie, new interpretations). RESULTS: Of the 1178 collected articles, 16 articles were included. Through synthesis, a new figure of six interrelated third-order constructs was developed: (1) embodied experience entails the dominating presence of the body; (2) (mis)recognition includes lack of recognition of CCRF by patients, relatives, and health providers; (3) small horizon describes a resultant narrowed world; (4) role change encompasses adopting other life roles; (5) loss of self refers to the impact on one's identity; and (6) regaining one's footing describes the struggle against CCRF, adaptation to CCRF and finally acceptance of a "new normal with CCRF." CONCLUSION: A new embodiment figure of CCRF with social (eg, (mis)recognition), spatial (eg, small horizon) and temporal dimensions (eg, regaining one's footing) was developed. This figure can help professionals to recognise CCRF, inform patients, and personalise treatment.

How sociophenomenology of the body problematises the 'problem-oriented approach' to growth hormone treatment.

This article examines how people who are shorter than average make sense of their lived experience of embodiment. It offers a sociophenomenological analysis of 10 semistructured interviews conducted in the Netherlands, focusing on if, how, and why height matters to them. It draws theoretically on phenomenological discussions of lived and objective space, intercorporeality and norms about bodies. The analysis shows that height as a lived phenomenon (1) is active engagement in space, (2) coshapes habituated ways of behaving and (3) is shaped by gendered norms and beliefs about height. Based on this analysis, the article challenges what we label as the 'problem-oriented approach' to discussions about growth hormone treatment for children with idiopathic short stature. In this approach, possible psychosocial disadvantages or problems of short stature and quantifiable height become central to the ethical evaluation of growth hormone treatment at the expense of first-hand lived experiences of short stature and height as a lived phenomenon. Based on our sociophenomenological analysis, this paper argues that the rationale for giving growth hormone treatment should combine medical and psychological assessments with investigations of lived experiences of the child. Such an approach would allow considerations not only of possible risks or disadvantages of short stature but also of the actual ways in which the child makes sense of her or his height.

Sharing lives, sharing bodies: partners negotiating breast cancer experiences.

By drawing on Jean-Luc Nancy's philosophy of ontological relationality, this article explores what it means to be a 'we' in breast cancer. What are the characteristics-the extent and diversity-of couples' relationally lived experiences of bodily changes in breast cancer? Through analyzing duo interviews with diagnosed women and their partners, four ways of sharing an embodied life are identified. (1) While 'being different together', partners have different, albeit connected kinds of experiences of breast cancer. (2) While 'being there for you', partners take care of each other in mutually dependent ways. (3) While 'being reconnected to you', partners (re-)relate to each other through intimacy and sexuality. (4) While 'being like you', partners synchronize their embodied daily lives to one another, sometimes up to the point that the self cannot be distinguished from the other anymore. These ways reveal that being a 'we' involves complex affective, bodily encounters in which the many fault lines that both separate partners into individual selves and join them together as a unity are continuously reshaped and negotiated. Being a 'we' may be understood as something we have to do. Therefore, in being true to the legacy of Nancy, we argue at the end of this article for a sensible praxis of sharing a life and body, particularly in breast cancer.

What does a breast feel like? A qualitative study among healthy women.

BACKGROUND: Restoring the body as normal as possible increases quality of life. Aesthetically, almost perfect breast reconstructions can be created. However, these reconstructed breasts have almost no sensation. Our hypothesis is that if we succeed in restoring sensation, this will increase quality of life. So far, little is written about the phenomenon of breast sensation, which makes it difficult to evaluate whether the quality of life increases after restored sensation. Therefore, the primary goal of this study is to determine what the importance and meaning is of breast sensation among healthy women. METHODS: A qualitative, descriptive phenomenological study was performed in an academic hospital between October 2016 and March 2017. A total of 10 semi-structured in-depth interviews were conducted in healthy women who did not undergo prior breast surgery. The sample size was based upon 'saturation'. The interviews were tape-recorded, transcribed verbatim, coded and analysed according to phenomenology keeping in mind the research question 'what is the importance and meaning of sensation of the breast?' RESULTS: Seven interrelated themes on how sensation of the breast is experienced were found: the absent breast (1), the present breast (2), the well-functioning breast (2a), the feminine breast (2b), the sensual breast (2c), the alien breast (2d), the safe breast (2d). CONCLUSIONS: The seven interrelated themes can form the basis to develop a quantitative research tool to evaluate quality of life after innervated breast reconstruction and can be implemented in counselling before breast reconstructive surgery in the form of shared treatment decisions.

Responding to Scars After Breast Surgery.

This article represents a phenomenological study on how women endow meaning to their scarred bodies after breast cancer treatment. Data collection consisted of multiple interviews with 10 women who had mastectomy, and 9 women who had breast-saving surgery. Against the background of the phenomenological premise that one's body can appear to oneself in various ways, we identified meaningful differences between experiences that go together with one's body "at a distance" and experiences that go together with one's body's "closeness." The diversity in body experiences we have revealed in our study calls for reconsidering the prejudiced critique of the "body as object" in mainstream phenomenology of health care, and invites medical professionals to develop the ability to recognize different perspectives on embodiment.

Multiple dimensions of embodiment in medical practices.

In this paper I explore the various meanings of embodiment from a patient's perspective. Resorting to phenomenology of health and medicine, I take the idea of 'lived experience' as starting point. On the basis of an analysis of phenomenology's call for bracketing the natural attitude and its reduction to the transcendental, I will explain, however, that in medical phenomenological literature 'lived experience' is commonly one-sidedly interpreted. In my paper, I clarify in what way the idea of 'lived experience' should be revisited and, subsequently, what this reconsideration means for phenomenological research on embodiment in health and medicine. The insight that the body is a condition of possibility for world-disclosing yet, at the same time, itself conditioned by this world forces us to not only zoom in on the body's subject-side, but also on its object-side. I argue that in order to render account for this double body ontology, phenomenology should include empirical sociological analyses as well. I thus argue in favor of the idea of a socio-phenomenology. Drawing on material from my own research project on embodied self-experiences after breast surgery, I show how this approach can be fruitful in interpreting the impact of disfigurements on a person's embodied agency, or a person's 'I can'.

A virtual rehabilitation program after amputation: a phenomenological exploration.

PURPOSE: This study provides an analysis of bodily experiences of a man with a lower leg amputation who used a virtual rehabilitation program. METHOD: The study reports data from semi-structured interviews with a 32-year veteran who used a virtual environment during rehabilitation. The interviews were analyzed using interpretative phenomenological analysis (IPA). RESULTS: During this rehabilitation program, he initially experienced his body as an object, which he had to handle carefully. As he went along with the training sessions, however, he was more stimulated to react directly without being aware of the body's position. In order to allow himself to react spontaneously, he needed to gain trust in the device. This was fostered by his narrative, in which he stressed how the device mechanically interacts with his movements. CONCLUSION: The use of a virtual environment facilitated the process of re-inserting one's body into the flow of one's experience in two opposite, but complementary ways: (1) it invited this person to move automatically without taking into account his body; (2) it invited him to take an instrumental or rational view on his body. Both processes fostered his trust in the device, and ultimately in his body. IMPLICATIONS FOR REHABILITATION: Providing (more) technological explanation of the technological device (i.e. the virtual environment), may facilitate a rehabilitation process. Providing (more) explicit technological feedback, during training sessions in a virtual environment, may facilitate a rehabilitation process.

The meaning of body experience evaluation in oncology.

Evaluation of quality of life, psychic and bodily well-being is becoming increasingly important in oncology aftercare. This type of assessment is mainly carried out by medical psychologists. In this paper I will seek to show that body experience valuation has, besides its psychological usefulness, a normative and practical dimension. Body experience evaluation aims at establishing the way a person experiences and appreciates his or her physical appearance, intactness and competence. This valuation constitutes one's 'body image'. While, first, interpreting the meaning of body image and, second, indicating the limitations of current psychological body image assessment, I argue that the normative aspect of body image is related to the experience of bodily wholeness or bodily integrity. Since this experience is contextualized by a person's life story, evaluation should also focus on narrative aspects. I finally suggest that the interpretation of body experience is not only valuable to assess a person's quality of life after treatment, but that it can also be useful in counseling prior to interventions, since it can support patients in making decisions about interventions that will change their bodies. To apply this type of evaluation to oncology practice, a rich and tailored vocabulary of body experiences has to be developed.