A Qualitative Phenomenological Philosophy Analysis of Affectivity and Temporality in Experiences of COVID-19 and Remaining Symptoms after COVID-19 in Sweden.

This article explores affectivity, temporality, and their interrelation in patients who contracted COVID-19 during the first wave of the pandemic in Sweden and with symptoms indicative of post-COVID-19 Condition (PCC) that remained one year after the infection. It offers a qualitative phenomenological philosophy analysis, showing how being ill with acute COVID-19 and with symptoms indicative of PCC can entail a radically altered self-world relation. We identify two examples of pre-intentional (existential) feelings: that of listlessness and that of not being able to sense what is real and not real, both of which, in different ways, imply a changed self-world relation. We offer an analysis of intentional feelings: how the fear of not "returning" to one's previous self and the hope of such a return weave together the present and the absent, as well as the past and the future, in ways that make the future appear as constricted, disquieting, or lost. We argue that a phenomenological differentiation among experiences of living with symptoms indicative of PCC-through attention to the way intentional affectivity and pre-intentional affectivity help shape the embodied self's attunement to the world-is apt to yield a better understanding of the variations within these experiences and contribute to clinical practice.

Ethico-Political aspects of clinical judgment in opportunistic screening for cognitive impairment: Arendtian and aristotelian perspectives.

This article examines a population-based opportunistic screening practice for cognitive impairment that takes place at a hospital in Sweden. At the hospital, there is a routine in place that stipulates that all patients over the age of 65 who are admitted to the ward will be offered testing for cognitive impairment, unless they have been tested within the last six months or have been diagnosed with any form of cognitive impairment. However, our analysis shows that this routine is not universally and mechanically applied. Rather, the health care professionals have developed and use an ethico-political judgment, concerning, for example, whom to test, when to offer the tests, and how to explain and perform them. This article explores the role and practice of this form of judgment, emphasising its political and ethical nature. The analysis is based on qualitative interviews with professionals and patients, and draws on the theories of Aristotle and Hannah Arendt.

Opportunistic cognitive screening in Sweden: What the tests mean and do for patients and healthcare professionals.

Since 2017, opportunistic screening for cognitive impairment takes place at the geriatric ward of a local hospital in Sweden. Persons above the age of 65 who are admitted to the ward, who have not been tested for cognitive impairment during the last six months nor have a previously known cognitive impairment, are offered the Mini-Mental State Examination and the Clock-Drawing Test. This article analyses what the opportunistic screening practice means for patients and healthcare professionals. It combines a phenomenologically-oriented focus on subjectivity and sense-making with a focus that is inspired by science and technology studies on what the tests become within the specific context in which they are used, which allows a dual focus on subjectivity and performativity. The article shows how the tests become several different, not infrequently seemingly contradictory, things: an offer, an important tool for knowledge-production, something unproblematic yet also emotionally troubling, something one can fail and an indicator that one belongs to a risk group and needs to be tested. Further, the article shows how the practice is shaped by the sociocultural context. It examines the role of the affective responses to the test for subjectivity - particularly patient subjectivity - and offers a set of recommendations, if this practice were to expand to other hospitals.

Qualitative study of GPs' views and experiences of population-based preconception expanded carrier screening in the Netherlands: bioethical perspectives.

OBJECTIVE: Between 2016 and 2017, a population-based preconception expanded carrier screening (PECS) test was developed in the Netherlands during a pilot study. It was subsequently made possible in mid-2018 for couples to ask to have such a PECS test from specially trained general practitioners (GPs). Research has described GPs as crucial in offering PECS tests, but little is known about the GPs' views on PECS and their experiences of providing this test. This article presents a thematic analysis of the PECS practice from the perspective of GPs and a bioethical discussion of the empirical results. DESIGN: Empirical bioethics. A thematic analysis of qualitative semi-structured interviews was conducted, and is combined with an ethical/philosophical discussion. SETTING: The Netherlands. PARTICIPANTS: 7 Dutch GPs in the Netherlands, interviewed in 2019-2020. RESULTS: Two themes were identified in the thematic analysis: 'Choice and its complexity' and 'PECS as prompting existential concerns'. The empirical bioethics discussion showed that the first theme highlights that several areas coshape the complexity of choice on PECS, and the need for shared relational autonomous decision-making on these areas within the couple. The second theme highlights that it is not possible to analyse the existential issues raised by PECS solely on the level of the couple or family. A societal level must be included, since these levels affect each other. We refer to this as 'entangled existential genetics'. CONCLUSION: The empirical bioethical analysis leads us to present two practical implications. These are: (1) training of GPs who are to offer PECS should cover shared relational autonomous decision-making within the couple and (2) more attention should be given to existential issues evoked by genetic considerations, also during the education of GPs and in bioethical discussions around PECS.

Ethico-Political Aspects of Conceptualizing Screening: The Case of Dementia.

While the value of early detection of dementia is largely agreed upon, population-based screening as a means of early detection is controversial. This controversial status means that such screening is not recommended in most national dementia plans. Some current practices, however, resemble screening but are labelled "case-finding" or "detection of cognitive impairment". Labelled as such, they may avoid the ethical scrutiny that population-based screening may be subject to. This article examines conceptualizations of screening and case-finding. It shows how the definitions and delimitations of the concepts (the what of screening) are drawn into the ethical, political, and practical dimensions that screening assessment criteria or principles are intended to clarify and control (the how of screening, how it is and how it should be performed). As a result, different conceptualizations of screening provide the opportunity to rethink what ethical assessments should take place: the conceptualizations have different ethico-political implications. The article argues that population-based systematic screening, population-based opportunistic screening, and case-finding should be clearly distinguished.

An analytic framework for conceptualisations of disease: nine structuring questions and how some conceptualisations of Alzheimer's disease can lead to 'diseasisation'.

According to the US National Institute on Aging and the Alzheimer's Association (NIA-AA), Alzheimer's disease (AD) should be understood as a biological construct. It can be diagnosed based on AD-characteristic biomarkers only, even if AD biomarkers can be present many years before a person experiences any symptoms of AD. The NIA-AA's conceptualisation of AD radically challenges past AD conceptualisations. This article offers an analytic framework for the clarification and analysis of meanings and effects of conceptualisations of diseases such as that of AD. This framework consists of nine questions that allows us to determine how the conceptualisations of diseases, such as that of AD, link or decouple the following terms to/from each other: screening, diagnosis, pathology, disease (along the lines of what have been labelled as "biological-physiological" or "normative" conceptions of disease in philosophy of medicine), symptoms, and illness. It also includes questions regarding how specific decouplings open up for new categories through which people can understand themselves in new ways, and what spaces of possibilities specific conceptualisations (and their decouplings and linkages) open to. The article shows how specific decouplings/linkages can open up not only for the phenomena of pathologisation but also for a distinct, but related phenomenon here termed as diseasisation.

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.

The Ethics of the Societal Entrenchment-approach and the case of live uterus transplantation-IVF.

In 2014, the first child in the world was born after live uterus transplantation and IVF (UTx-IVF). Before and after this event, ethical aspects of UTx-IVF have been discussed in the medical and bioethical debate as well as, with varying intensity, in Swedish media and political fora. This article examines what comes to be identified as important ethical problems and solutions in the media debate of UTx-IVF in Sweden, showing specifically how problems, target groups, goals, benefits, risks and stakes are delineated and positioned. It also demonstrates how specific assumptions, norms and values are expressed and used to underpin specific positions within this debate, and how certain subjects, desires and risks become shrouded or simply omitted from it. This approach-which we label the Ethics of the Societal Entrenchment-approach, inspired by Koch and Stemerding (1994)-allows us to discuss how the identification of something as the problem helps to shape what gets to be described as a solution, and how specific solutions provide frameworks within which problems can be stated and emphasised. We also offer a critical discussion of whether some of these articulations and formations should be seen as ethically troubling, and if so, why.

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.

Constructing and enacting kinship in sister-to-sister egg donation families: a multi-family member interview study.

Although intra-familial egg donation has been practiced for more than 15 years in several countries, little is known about family relationships in this family type. Framed within the new kinship studies, this article focuses on the experiential dimension of kinship in sister-to-sister egg donation families: how is kinship 'unpacked' and 'reconstructed' in this specific family constellation? Qualitative data analysis of interviews with receiving parents, their donating sisters and the donor children revealed six themes: (1) being connected as an extended family; (2) disambiguating motherhood; (3) giving and receiving as structuring processes; (4) acknowledging and managing the 'special' link between donor and child; (5) making sense of the union between father and donor; and (6) kinship constructions being challenged. This study showed the complex and continuous balancing of meanings related to the mother-child dyad, the donor-child dyad and the donor-father dyad. What stood out was the complexity of, on the one hand cherishing the genetic link with the child allowed by the sisters' egg donation, while, on the other, managing the meanings related to this link, by, for instance, acknowledging, downsizing, symbolising, and differentiating it from the mother-child bond. (A Virtual Abstract of this paper can be accessed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).

'You have all those emotions inside that you cannot show because of what they will cause': Disclosing the absence of one's uterus and vagina.

This article examines young women's experiences of telling others that they have no uterus and no, or a so-called small, vagina - a condition labelled 'congenital absence of uterus and vagina', which falls within the larger category of 'atypical' sex development. Our aim is to investigate how affective dissonances such as fear and frustration are expressed in young women's narratives about letting others know about their 'atypical' sex development, and how these women narrate desired steps to recognition. By drawing on feminist writings on the performativity of affects or emotions, we examine what affective dissonances accomplish within three identified narratives: how affective dissonances may contribute to the women's positioning of themselves vis-à-vis other individuals and how affective dissonances can imply a strengthening and/or questioning of norms about female embodiment and heterosexuality. This allows us to tease out how routes for questioning of these norms become available through the three narratives that together form a storyline of coming out about a congenital absence of a uterus and vagina in the Swedish context. Furthermore, by demonstrating how others' responses shape the women - their understandings of their own bodies, their envisaged future disclosures and their relations - our analysis highlights the multifaceted intersubjective and in other ways relational, affective and temporal dimensions of coming out about one's 'atypical' sex development.

A phenomenological approach to the ethics of transplantation medicine: sociality and sharing when living-with and dying-with others.

Recent years have seen a rise in the number of sociological, anthropological, and ethnological works on the gift metaphor in organ donation contexts, as well as in the number of philosophical and theological analyses of giving and generosity, which has been mirrored in the ethical debate on organ donation. In order to capture the breadth of this field, four frameworks for thinking about bodily exchanges in medicine have been distinguished: property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. Unfortunately, they all run into difficulties in terms of both making sense of the relational dimensions of postmortem and live organ donations and being normatively adequate in the sense of shedding light and providing guidance on ethical concerns when body parts are donated. For this reason, this article presents a phenomenological framework of giving-through-sharing, based on Maurice Merleau-Ponty's philosophy. This framework makes sense of relational dimensions of postmortem and live organ donation. It also sheds light on three highly debated concerns in organ donation ethics: indebtedness on the part of recipients, the fact that some live donors do not experience donation as a matter of choice, and the potentially painful experience of donors' relatives, who need to make decisions about postmortem organ donation at a time of bereavement. It can indirectly support what may be called a normalization of bodily exchanges in medicine.

Lesbian shared biological motherhood: the ethics of IVF with reception of oocytes from partner.

In vitro fertilization (IVF) with reception of oocytes from partners (ROPA) allows lesbian mothers to share biological motherhood. The gestational mother receives an egg from her partner who becomes the genetic mother. This article examines the ethics of IVF with ROPA with a focus on the welfare of the woman and the resulting child, on whether ROPA qualifies as a "legitimate" medical therapy that falls within the goals of medicine, and on the meaning and value attributed to a biologically shared bond between parents and child. We also contrast IVF with ROPA with egg donor IVF for heterosexual couples and intrafamilial live uterus transplantation with IVF, and show how Swedish legislation makes certain ways of sharing biological bonds out of place. In Sweden, IVF with ROPA is illegal, egg donor IVF for heterosexual couples is allowed and practiced as is sperm donor IVF for lesbians, and live uterus transplantation is performed within a research project (though not allowed in regular health care). But is ROPA really ethically more problematic than these other cases? The article argues that IVF with ROPA gives rise to fewer ethical questions than does live uterus transplantation with IVF and, in some cases, egg donor IVF.

A philosophical defense of the idea that we can hold each other in personhood: intercorporeal personhood in dementia care.

Since John Locke, regnant conceptions of personhood in Western philosophy have focused on individual capabilities for complex forms of consciousness that involve cognition such as the capability to remember past events and one's own past actions, to think about and identify oneself as oneself, and/or to reason. Conceptions of personhood such as Locke's qualify as cognition-oriented, and they often fail to acknowledge the role of embodiment for personhood. This article offers an alternative conception of personhood from within the tradition of phenomenology of the body. The article presents a phenomenological analysis of joint musical activity in dementia care and outlines an intercorporeal conception of personhood based on this analysis. It also provides a philosophical basis for the idea that others can hold us in personhood, and it questions a strict one-body-one-person logic that has pertained in much personhood debate.

Neither property right nor heroic gift, neither sacrifice nor aporia: the benefit of the theoretical lens of sharing in donation ethics.

Two ethical frameworks have dominated the discussion of organ donation for long: that of property rights and that of gift-giving. However, recent years have seen a drastic rise in the number of philosophical analyses of the meaning of giving and generosity, which has been mirrored in ethical debates on organ donation and in critical sociological, anthropological and ethnological work on the gift metaphor in this context. In order to capture the flourishing of this field, this article distinguishes between four frameworks for thinking about bodily exchanges in medicine: those of property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. These frameworks represent four different ways of making sense of donation of organs as well as tissue, gametes and blood, draw on different conceptions of the relations between the self and the other, and bring out different ethical issues as core ones. The article presents these frameworks, argues that all of them run into difficulties when trying to make sense of reciprocity and relational interdependence in donation, and shows how the three gift-giving frameworks (of heroism, sacrifice and aporia) hang together in a critical discussion about what is at stake in organ donation. It also presents and argues in favour of an alternative intercorporeal framework of giving-through-sharing that more thoroughly explicates the gift metaphor in the context of donation, and offers tools for making sense of relational dimensions of live and post mortem donations.

Ethical guidelines and the prevention of abuse in healthcare.

OBJECTIVE: In obstetrical and gynaecological healthcare, patients often find themselves in a vulnerable position. Sensitive issues such as sexual and reproductive health are addressed and certain procedures can be experienced as abusive. According to research a lifetime prevalence of abuse in healthcare (AHC) can be assumed for 13-28% of female patients in the Nordic countries. In the present study we analyse the content of ethical documents for healthcare professionals within obstetrics and gynaecology in Sweden, in order to find out to what extent ethical guidelines consider issues that have shown to be related to the occurrence of AHC. STUDY DESIGN: We searched the literature to find empirical data on AHC. Guidelines for nurses, midwives and physicians were selected. After developing an analytical framework based on the empirical data the content of the ethical guidelines was analysed. RESULTS: The various ethical guidelines for staff working within obstetrics and gynaecology differ distinctively from each other regarding their content of issues that are related to AHC. Issues that were mostly disregarded were: considering the patient's perspective and the patients' possible experience of violence, considering power imbalances within healthcare, sexual misconduct, how to deal with other professional's ethical misconduct and how professionals relate to each other. We found the ethical guidelines of the International Federation of Gynecology and Obstetrics (FIGO) and of the International Confederation of Midwives to be those which contained most of the issues that have empirically shown to be important in regard to AHC. CONCLUSION: While staff members from different professions may share responsibility for the same patient, their ethical guidelines vary considerably. To become a possible resource for prevention of AHC, we suggest that ethical guidelines in healthcare should be revised following empirical research on ethical conduct. As ethical guidelines cannot be effective by their existence only, we would like to initiate a discussion on the function and use of ethical guidelines in general and regarding AHC in particular. Being aware that ethical guidelines are only a part of ethics in healthcare, however, we envision a broader approach to the aim of preventing AHC, where research is encouraged on how a virtue ethics approach could be applied.