Self-Testing for Dementia: A Phenomenological Analysis of Fear.

Following the growing economic relevance of mobile health (mHealth) and the increasing global prevalence of dementia, self-testing apps for dementia and mild neurocognitive disorder (MCD) have been developed and advertised. The apps' promise of a quick and easy tool has been criticized in the literature from a variety of angles, but as we argue in this article, the celebratory characterization of self-testing also stands in disbalance to the various kinds of fears that may be connected to taking the test. By drawing on Sara Ahmed's phenomenological theory on emotions and by referring to illustrative experiences from two users with a particular dementia self-testing app, we explore four dimensions of fear derived from phenomenology: performative, ontological, embodied, and temporal dimensions. We argue that fear (1) motivates one to take the self-test and to try to take control over one's health; (2) is shaped by and shapes the ways in which we make sense of ourselves and others as cognitively deficient; (3) constructs and is constructed by our differently embodied presence in the world; and that (4) testing makes a fearful future self as cognitively deficient more tangible. In outlining these different dimensions of fear, this article expands the understanding of the meaning of experiencing self-testing in comparison to the mostly quantitative literature on this topic.

'There is still a part of me that would love to be the old me again', how do adolescents and young adults (AYA) experience cancer-related bodily changes: a phenomenological interview study.

PURPOSE: Due to the increase in both cancer incidence and overall survival rates, more adolescents and young adults (AYAs) have to live with the effects that their cancer diagnosis and following treatments have on their bodies. This qualitative phenomenological study aimed to gain more insight into the way AYAs experience these effects and how they respond to these effects. METHODS: Semi-structured interviews with a sample of 11 AYAs with an age range of 25-41 years at the time of the interview, who were diagnosed with different types of cancer, were conducted. Participants were recruited via social media and patient associations until data saturation was reached. A topic guide with open-ended questions about lived experiences was used. Interpretative phenomenological analysis (IPA) was performed to analyse the transcripts. RESULTS: We identified six Group Experiential Themes based on different ways AYAs experience their bodies: (1) self-conscious body, (2) vulnerable body, (3) adapting to the body, (4) uncontrollable body, (5) remembering the body and (6) shared bodies. CONCLUSION: This study offers in-depth insight into the bodily experiences of AYAs after cancer and how they respond to these changes from a phenomenological point of view. IMPLICATIONS FOR CANCER SURVIVORS: This knowledge could be beneficial to provide more guidance for AYAs during and after their illness, by focussing on personalised psychological (after)care.

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.

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.

A Protocol Study to Establish Psychological Outcomes From the Use of Wearables for Health and Fitness Monitoring.

Background: The last few decades people have increasingly started to use technological tools for health and activity monitoring, such as tracking apps and wearables. The main assumption is that these tools are effective in reinforcing self-empowerment because they support better-informed lifestyle decision-making. However, experimental research assessing the effectiveness of the technological tools on such psychological outcomes is limited. Methods and Design: Three studies will be conducted. First, we will perform a systematic review to examine the experimental evidence on the effects of self-tracking apps on psychological outcome measurements. Second, we will conduct a longitudinal field experiment with a between subject design. Participants (N = 150) begin a 50-day exercise program, either with or without the aid of the self-tracking app Strava. Among those who use Strava, we vary between those who use all features and those who use a limited set of features. Participants complete questionnaires at baseline, at 10, 25, and 50 days, and provide details on what information has been tracked via the platform. Third, a subset of participants is interviewed to acquire additional qualitative data. The study will provide a rich set of data, enabling triangulation, and contextualization of the findings. Discussion: People increasingly engage in self-tracking whereby they use technological tools for health and activity monitoring, although the effects are still unknown. Considering the mixed results of the existing evidence, it is difficult to draw firm conclusions, showing more research is needed to develop a comprehensive understanding. Trial registration: Netherlands Trial registration: NL9402, received on 20 April 2021; https://www.trialregister.nl/trial/9402.

Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process.

In healthcare settings, patient participation is increasingly adopted as a possible remedy to ill people suffering from 'epistemic injustices' - that is to their unfair harming as knowers. In exploring and interpreting patient participation discourses within the 2013-2018 Dutch Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Health Council advisory process, this paper assesses the epistemological emancipatory value of this participatory practice. It reveals that in the analysed case, patient representatives predominantly offer biomedical knowledge about ME/CFS. They frame this condition as primarily somatic, and accordingly, perceive appropriate diagnostic criteria, research avenues and treatment options as quantifiable, objectifiable and explicitly non-psychogenic. This paper argues that such a dominant biomedical patient participatory practice is ambiguous in terms of its ability to correct epistemic injustices towards ill people. Biomedicalized patient participation may enhance people's credibility and their ability to make sense of their illness, but it may also undermine their valid position within participatory practices as well as lead to (sustaining) biased and reductive ideas about who ill people are and what kind of knowledge they hold. The final section of this paper offers a brief reflection on how to navigate such biomedicalized participatory practices in order to attain more emancipatory ones.

Virile Infertile Men, and Other Representations of In/Fertile Hegemonic Masculinity in Fiction Television Series.

Fiction television series are one of the few cultural expressions in which men's infertility experiences are represented. Through a content analysis of twenty fiction series, this article describes and analyzes such representations. By drawing on Connell's concept of hegemonic masculinity and Ricoeur's understanding of paradoxical power structuring, four character types of infertile men are identified: (1) the virile in/fertile man, (2) the secretly non-/vasectomized man, (3) the intellectual eunuch, (4) the enslaving post-apocalyptic man. While these various dramatis persona outline different ways of how infertile men relate to normative hegemonic masculinity, they all represent infertile men as diverging from shared masculine norms. This non-normativity initially excludes many represented men from hegemonic positions. Eventually, however, these men generally aspire to and succeed in reaffirming their hegemonic masculinity through coercive force towards women and other men, through instigating the precondition for any power structure - the shared will to live together as a community -, and/or by seeking and finding explicit recognition for their normativity and dominance. At the end of this paper, I will reflect on the potential harmful effect of these outlined representations of infertile men and make a plea for diversifying representations of infertile men in our culture.

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.

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.

Male partners' experiences of caregiving for women with cervical cancer-a qualitative study.

AIMS AND OBJECTIVES: This study aimed to develop knowledge on the experiences of male partners of women with cervical cancer during and after the illness. We explore men's experiences of becoming caregivers as well as how the illness trajectory affects or has affected the relationship. BACKGROUND: Receiving a cancer diagnosis has a significant impact on the lives of both the cancer patient and their family members. However, studies of male partners' experiences with cancer patients are scarce. Additionally, cervical cancer and its impact on male caregivers are less explored than how other cancer diagnoses impact male caregivers. The theoretical concept of caring masculinities is helpful to interpret men's experiences as caregivers and partners. DESIGN: The study employs a qualitative design with semi-structured interviews with six men/partners recruited through the gynaecological section at a hospital. COREQ reporting guidelines have been applied. FINDINGS: Based on our analyses, we find that men's experiences of being caregivers and partners of women treated for cervical cancer are multifaceted, comprising emotional and practical aspects. However, three main findings stand out as particularly significant for men in the context of cervical cancer: loneliness, an altered sexual relationship and shared feelings of vulnerability. CONCLUSIONS: The men describe an interdependence in the relationship with the women but also how the relationships have been seriously altered, particularly when it comes to sexuality. These findings resonate with hegemonic as well as caring masculinities. RELEVANCE TO PRACTICE: Complex issues of intimacy and sexuality should be a pivotal element in educating future healthcare professionals. We strongly suggest that issues such as dealing with masculinity and caregiving roles should be on the agenda and reflected upon in teaching and supervising in clinical practice. A broader approach to sexual health and relationships is needed in the patient-clinician relationships, including information about human papillomavirus.