Agency in urgency and uncertainty. Vaccines and vaccination in European media discourses.

Although Covid-19 was not the first pandemic, it was unique in the scale and intensity with which societies responded. Countries reacted differently to the threat posed by the new virus. The public health crisis affected European societies in many ways. It also influenced the way the media portrayed vaccines and discussed factors related to vaccine hesitancy. Europeans differed in their risk perceptions, attitudes towards vaccines and vaccine uptake. In European countries, Covid-19-related discourses were at the centre of media attention for many months. This paper reports on a media analysis which revealed significant differences as well as some similarities in the media debates in different countries. The study focused on seven European countries and considered two dimensions of comparison: between the pre-Covid period and the beginning of the Covid pandemic period, and between countries. The rich methodological approach, including linguistics, semantic field analysis and discourse analysis of mainstream news media, allowed the authors to explore the set of meanings related to vaccination that might influence actors' agency. This approach led the authors to redefine vaccine hesitancy in terms of characteristics of the "society in the situation" rather than the psychological profile of individuals. We argue that vaccine hesitancy can be understood in terms of agency and temporality. This dilemma of choice that transforms the present into an irreversible past and must be taken in relation to an uncertain future, is particularly acute under the pressure of urgency and when someone's health is at stake. As such, it is linked to how vaccine meaning is co-produced within public discourses.

Trust matters: The Addressing Vaccine Hesitancy in Europe Study.

This article presents the design of a seven-country study focusing on childhood vaccines, Addressing Vaccine Hesitancy in Europe (VAX-TRUST), developed during the COVID-19 pandemic. The study consists of (a) situation analysis of vaccine hesitancy (examination of individual, socio-demographic and macro-level factors of vaccine hesitancy and analysis of media coverage on vaccines and vaccination and (b) participant observation and in-depth interviews of healthcare professionals and vaccine-hesitant parents. These analyses were used to design interventions aimed at increasing awareness on the complexity of vaccine hesitancy among healthcare professionals involved in discussing childhood vaccines with parents. We present the selection of countries and regions, the conceptual basis of the study, details of the data collection and the process of designing and evaluating the interventions, as well as the potential impact of the study. Laying out our research design serves as an example of how to translate complex public health issues into social scientific study and methods.

Touching the cornerstone: An illustrative example of the effects of stigma and discrimination on vaccine-hesitant parents.

Objectives: The concept of vaccine hesitancy encompasses multiple views on the subject. However, there has been an increasing polarization of the discourse on vaccine hesitancy leading to the stigmatization of those parents who expressed doubts or concerns regarding vaccination practices. The present study aimed to explore the drivers and consequences of polarized discourses on vaccination in the Portuguese context. This paper is part of a broader study which aims to gain a deeper understanding about the phenomenon of vaccine hesitancy at the European level. Study design: A qualitative research design was used. Methods: The sample was comprised of thirty-one Portuguese vaccine hesitant parents who were interviewed. A thematic analysis of the transcribed interviews was performed which allowed us to identify key themes. Results: The results showed that the labelling of vaccine-hesitant parents as 'anti-vaxxers' along with social media play a crucial role in promoting the polarization of vaccine-related attitudes. The stigmatization of vaccine hesitant parents has a disruptive impact on their social network leading them to search for online platforms where they can exchange vaccines-related information without being discriminated. Conclusions: The stigma and discrimination experienced by vaccine-hesitant parents stimulated that hesitancy becomes more entrenched. Therefore, pluralism should be used to tailor vaccination promotion campaigns to different targets, promoting its reach and efficacy.

Recruiting a Hard-to-Reach, Hidden and Vulnerable Population: The Methodological and Practical Pitfalls of Researching Vaccine-Hesitant Parents.

While recruitment is an essential aspect of any research project, its challenges are rarely acknowledged. We intend to address this gap by discussing the challenges to the participation of vaccine-hesitant parents defined here as a hard-to-reach, hidden and vulnerable population drawing on extensive empirical qualitative evidence from seven European countries. The difficulties in reaching vaccine-hesitant parents were very much related to issues concerning trust, as there appears to be a growing distrust in experts, which is extended to the work developed by researchers and their funding bodies. These difficulties have been accentuated by the public debate around COVID-19 vaccination, as it seems to have increased parents' hesitancy to participate. Findings from recruiting 167 vaccine-hesitant parents in seven European countries suggest that reflexive and sensible recruitment approaches should be developed.

Feeding the family at the end-of-life: An ethnographic study on the role of food and eating practices for families facing death in Portugal.

Little has been said about the disruptive impact that the inability to eat and to participate in mealtimes has for patients with a life-threatening illness and their families. The aim of the current study is to overcome this gap and shed light on how food and eating practices are experienced by families at the end-of-life. An ethnographic research was developed in two Portuguese palliative care units: participant observation was conducted during 10 months and in-depth interviews were carried out with 10 patients with a life-threatening illness, 20 family members and 20 palliative care professionals. Food is not only a matter of nutrition in a biological sense, but also an act of giving care to patients with a life-threatening illness. The findings suggest that food and eating practices affect the processes of relationality and of doing family at the end-of-life in Portugal. Attention is particularly paid to gender differences. The study supports recent sociological research which understands the dying process as a relational experience and intends to develop sociological knowledge on the materialities of care.

Preferences around the disclosure of dying: A vision from Portuguese society.

OBJECTIVE: This paper aims to explore the extent to which the "revivalist" discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal. METHOD: An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed. RESULTS: The "revivalist" good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The "social embeddedness narrative" offers an alternative to the "revivalist" good death script. SIGNIFICANCE OF RESULTS: The "revivalist" discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.

Contestation, instrumental resistance and strategic conformation within the diagnostic process of gender dysphoria in Portugal.

This article aims to provide insights into the ways in which trans people (i.e. those whose gender identity or expression do not align with their assigned sex at birth) in Portugal make sense of the diagnosis of gender dysphoria. Drawing upon in-depth interviews with 10 trans men and 9 trans women carried out by the TRANSRIGHTS team, we identified three major themes: (a) contestation of gender dysphoria as a (mental) illness, (b) instrumental resistance to complete demedicalisation of gender dysphoria and (c) strategic conformation to gender essentialism within the diagnostic process of gender dysphoria. We found that the need to access medical treatments leads some trans people to approach the diagnosis strategically. While almost all trans people were in favour of the depathologisation of gender dysphoria and at the same time were against its demedicalisation, mainly for instrumental reasons, a few demonstrated contrasting positions whether by agreeing with the idea of gender dysphoria as a pathology or by rejecting medicalisation. The study offers a more nuanced perspective on gender dysphoria than that described in previous sociological and transgender literature.

The Stigma Experienced by Terminally Ill Patients: Evidence From a Portuguese Ethnographic Study.

The aim of this study was to offer an understanding of the ways in which terminally ill patients may face discrimination due to their visibly altered body. An ethnographic approach was adopted and fieldwork was conducted over 10 months in 2 inpatient hospice units in Portugal. Participant observation was complemented by 50 in-depth interviews with terminally ill patients, family members, and hospice staff. The stigma experienced by terminally ill patients derived mostly from the behavior of peers, extended family members, and friends toward their visibly altered body. There was no evidence that these patients were discredited by their immediate family when they became visibly unwell; unlike what has been reported in previous studies. This finding could be related to the strong familial culture of Portuguese society.

Witnessing a body in decline: Men's and women's perceptions of an altered physical appearance.

There has been a tendency within the literature to ignore how men and women who are very ill and at the end of life perceive and experience their visibly altered bodies. This article aims to provide new insights about this matter. A qualitative research approach was adopted. In-depth interviews were conducted with 10 hospice patients, 20 family members, and 20 members of hospice staff. Findings reveal that because of masculine and feminine norms, physical appearance is more a matter of concern to women than to men who are close to death. This contradicts theories that suggest that patients experience a disinvestment on their sense of masculinity and femininity alongside the process of bodily deterioration and decay prior impending potential death.

In-patient hospice: A qualitative study with Portuguese patients, family and staff.

The present study aims to provide insights on the role of in-patient hospices, which are sometimes described as disconnecting spaces. Researchers complement participant observation with in-depth interviews with 10 hospice patients, 20 family members, and 20 members of hospice staff. The findings suggest that the hospice provides a space where patients could enjoy the company of their loved ones without concerns regarding the dying process. The study reveals that the hospice offers a proper alternative to the home setting even in countries characterized by a strong familialistic culture like Portugal.

Making sense of a changed physical body: why gender matters at end of life.

The bodily experience of patients near end of life has been presented within sociological literature as largely undifferentiated. The attempt of this paper is to overcome this gap by exploring how gender intersects with the loss of bodily autonomy experienced by hospice patients. The study was conducted in two in-patient hospice units located near Lisbon, the capital of Portugal. A total of ten terminally ill patients were interviewed, along with twenty family members and twenty members of hospice staff. For the men in this study loss of bodily autonomy was a very dramatic experience as it contravened masculine norms. The women's reactions towards their loss of autonomy were less negative compared to those of men and they made a considerable effort to integrate the best as they could their physical condition. This reflected feminine traits. Findings suggested that the loss of bodily autonomy is gendered in the sense that men and women experience it in dissimilar ways.