Vaccine hesitancy has gained renewed attention as an important public health concern worldwide. Against this backdrop, over the last decade, we have conducted various qualitative, social science studies with the broad shared aim of better understanding this complex phenomenon. This has included various Cochrane systematic reviews of qualitative research globally, systematic reviews of qualitative research in Africa, and primary research studies in South Africa. These studies have also explored vaccine hesitancy for various vaccines, including routine childhood vaccination, HPV vaccination and other routine vaccinations for adolescents, and, most recently, COVID-19 vaccination. In this reflective and critical commentary piece we reflect on seven key overarching insights we feel we have gained about this complex phenomenon from the varying studies we have conducted over the past decade. These insights comprise the following: (1) the relationship between vaccine knowledge and hesitancy is complex and may operate in multiple directions; (2) vaccine hesitancy is driven by multiple socio-political forces; (3) vaccine hesitancy may be many things, rather than a single phenomenon; (4) vaccine hesitancy may be an ongoing ‘process’, rather than a fixed ‘stance’; (5) vaccine hesitancy may sometimes be about a ‘striving’, rather than a ‘resisting’; (6) ‘distrust’ as a driver of vaccine hesitancy needs to be better contextualized and disaggregated; and (7) the ‘demand-side’ versus ‘supply/access-side’ distinction of the drivers of suboptimal vaccination may be misleading and unhelpful. In unpacking these insights, we problematize some of the common assumptions within the vaccine hesitancy literature and flag topics that we think could benefit from further scrutiny and debate. Our hope is that this can provide a platform for further engagement on these issues and ultimately contribute towards fostering a more critical public health understanding of vaccine hesitancy. Vaccine hesitancy has gained renewed attention as an important global public health concern. Most certainly, this is not a new phenomenon—public skepticism and controversies surrounding vaccination are as old as vaccines themselves. However, vaccine hesitancy trends appear to have escalated in scope and scale in recent years ,2. PreseIn response to this situation, in 2011, the World Health Organization (WHO) listed vaccine hesitancy as a priority topic for its Strategic Advisory Group of Experts on Immunization (SAGE) , and ideAgainst this backdrop, over the last decade, we have conducted several qualitative social science studies with the broadly shared aim of understanding vaccine hesitancy better, including what it is, what drives it, and how it might be addressed. Specifically, we have conducted various Cochrane systematic reviews of qualitative research on the nature and drivers of vaccine hesitancy globally for routine childhood vaccines  human paIn this reflective and critical commentary piece, we reflect on seven key overarching insights we feel we have gained about this complex phenomenon. We derived these insights by critically, contemplatively, and more subjectively reflecting on our 10 years of research on this topic and associated deep immersion in the subject. These insights cut across the varying studies we have conducted, and we believe have relevance across different vaccines and settings. In reflecting on these insights, we problematize some of the common assumptions within the vaccine hesitancy literature and flag topics which we think could benefit from further scrutiny and debate. Our hope is that this can provide a platform for further engagement on these issues, and ultimately contribute towards fostering a more critical public health understanding of vaccine hesitancy. One of the most persistent assumptions in the vaccine hesitancy literature is that it is driven by limited or a lack of biomedical information (‘knowledge-deficit’ approaches) ,30,31. TFor example, in our systematic review of the factors that influence parents’ views and practices around routine childhood vaccination in Africa, we found that for some, their hesitancy towards vaccination was driven by inadequate knowledge about vaccines and what they do . HoweverIn addition to challenging the common assumption of a straightforward and positive association between vaccination knowledge and acceptance, the complexity of this relationship revealed through our research also raises questions about what we should be trying to achieve through our public health interventions. That is, should we be seeking to raise awareness about, and compliance with, vaccination? Or is building science literacy so people can make informed decisions and consent for vaccination important? These different goals are likely to give rise to different types of interventions and potential outcomes, which are not necessarily aligned with reducing vaccine hesitancy and increasing vaccine acceptance. For example, providing people with biomedical knowledge about vaccination might dispel certain myths , and yet this might also remove a key motivator for vaccination and in turn reduce acceptance of it. Similarly, improving the science literacy of those who receive vaccination despite knowing very little about it might enhance their capacity to make informed decisions and give informed consent, and yet this could also increase their hesitancy towards vaccination. Ultimately, these potential tensions around the objectives of our public health interventions require more critical consideration. A central finding across our research globally, regionally, and in South Africa has been that vaccine hesitancy is driven by more complex social and political factors beyond the individual. For example, we have found that vaccine hesitancy may be influenced by people’s broader worldviews about health and illness; by the vaccination ideas and practices of people’s social networks and communities; by wider political issues and relations of power, and particularly the impact these have on peoples’ trust (or distrust) in those associated with vaccination programs; by poverty and marginalization; and by people’s access to and experiences of vaccination services and frontline healthcare professionals . What weOur research has revealed that vaccine hesitancy—the way it manifests and why it occurs—varies considerably across places, populations, time, and even vaccines. That is, we have observed that local contexts and framings matter greatly. For example, in our global and regional systematic reviews, we found that hesitancy towards HPV vaccination was uniquely connected to sociocultural norms surrounding adolescence, sexuality, and gender, and the values people attach to different sexual practices and sexualities ,24. Relaphenomenon and potentially move towards conceptualizing the phenomena of vaccine hesitancies in all their multiplicity. At the same time, the diverse nature of vaccine hesitancy means that single and one-size-fits-all strategies are unlikely to have much traction. Rather, there is a need for multi-component interventions that are tailored to local socio-political contexts, and which target the specific reasons driving vaccine hesitancy in those contexts.The point is that vaccine hesitancy may not be a single phenomenon, which is something that is widely recognized in the literature ,37. HoweAnother common assumption in the vaccine hesitancy literature is that vaccine decisions comprise a more or less fixed position or stance that individuals arrive at in a linear way and at a discrete point in time ,38,39,40for something: to strive for improved immunity, strength or resilience, however conceived” [People who are hesitant towards vaccines are often portrayed as ‘resistant’ or ‘selfish’ or even ‘evil’, along with various other stigmatizing labels ,39,41. Snceived” . Like Lenceived” ,35,39,41For example, in our global and regional systematic reviews on routine childhood vaccination, we found that in some instances vaccine hesitancy was about a desire to belong and feel included among peers—a “positively prosocial act”  to buildWhat we and others ,35,39,41Distrust has become a pervasive concept in the literature for understanding vaccine hesitancy and what drives it ,42. LikeFor example, in South Africa we found vaccine hesitancy towards COVID-19 vaccines was intimately connected to a break-down of trust in authorities . ImportaTherefore, and in sum, we have found that distrust, its drivers, and its impact on vaccination can only be properly understood when situated within the intricacies of particular political events, relations, and processes within particular times and places . HoweverAs such, there is a dire need to move away from the “shorthand, universalizing qualities” of the concept of distrust, to explaining why trusting relations between parents and institutions in all their “rich diversity and texture” might break down . This isThe distinction between ‘supply/access-side’ and ‘demand-side’ issues is commonly made in the literature as a way to understand the reasons for suboptimal vaccination ,44,45. HOur research has, however, revealed that the so-called ‘supply/access-related’ and ‘demand-related’ dimensions of vaccination are deeply intertwined and often interact in complex ways ,21,22,28This intrinsic interconnectedness we have found between the supposed ‘supply/access-side’ and ‘demand-side’ of vaccination suggests that it is potentially misleading and unhelpful to conceptualize and address them separately. There have been recent positive trends in the vaccine hesitancy literature towards collapsing this distinction. For example, understandings of vaccine hesitancy are increasingly incorporating concepts such as “convenience” ,47 and ““Medicine is a social science and politics is nothing else but medicine on a large scale. Medicine as a social science, as the science of human beings, has the obligation to point out problems and to attempt their theoretical solution; the politician, the practical anthropologist, must find the means for their actual solution”.Five years ago, we reflected upon the knowledge advances and gaps on vaccine hesitancy ,52. This


To identify the processes of cancer-related pain relief and exacerbation faced by outpatients in an acute care hospital and to examine the support needed for outpatient pain control.We conducted semi-structured, in-depth interviews with patients from the outpatient department of Showa University Northern Yokohama Hospital in Kanagawa Prefecture, Japan. Participants were recruited by purposive sampling. From the recorded data, verbatim transcripts were made and used as textual data for analysis by consistent comparative method.Between April 2018 and April 2022, interviews were conducted with 30 participants. Analysis of the verbatim transcripts generated 13 categories from 27 concepts. Category relationships were examined, and a conceptual framework was developed. Outpatients went from being in a state of hesitation towards consultation with medical professionals to receiving individual consistent follow-ups by medical professionals in the hospital and community pharmacies, which led to patient teleconsultations when their physical condition changed, leading to an improvement of pain.The process of relief and exacerbation of cancer-related pain experienced by outpatients in the acute care hospital reveals that the provision of consistent follow-up through remote or in-person interviews has an important role to play in pain management, as it helps to build relationships between patients and medical professionals. Alternatively, when outpatients exhibited endurance, their pain worsened, and they fell into a negative cycle of poor pain control. To meet the needs of all patients, different levels of palliative care have recently been proposed: primary, secondary, and tertiary . PalliatAn increasing number of outpatients have undergone cancer drug treatment in recent years . It is eWe conducted a qualitative semi-structured, in-depth interviews with patients from the outpatient department of Showa University Northern Yokohama Hospital in Kanagawa Prefecture, Japan. An interview guide was developed with the consensus of hospital and community pharmacists Table . The stuThe first author (MH), a female hospital pharmacist trained by a specialist, conducted the interviews. Age (date of birth), gender, primary disease, chemotherapy, and medications were collected from the medical records of the consenting study participants. Eastern Cooperative Oncology Group (ECOG) Performance Status were recorded by the researcher, as determined during the interviews. Field notes were made for each survey, describing the participants and their situation at the time of the survey.*Based on the agreement between hospital pharmacists and community pharmacists.Participants were recruited by purposive sampling. Selection criteria were: outpatients with advanced cancer, who had been administered medical narcotics for cancer pain control at Showa University Northern Yokohama Hospital; patients aged 20–80 years at the time of consent; and patients who provided written informed consent to participate in the study. Exclusion criteria were patients with a Numerical Rating Scale pain scale score ≥ 3 at rest to avoid interviewing patients in severe pain, patients who were judged ineligible by the doctor in charge, and patients who were unable to communicate in Japanese. The study was approved by the research ethics committee of Showa University Northern Yokohama Hospital . The purpose of the study and protection of personal privacy were explained to the participants and written informed consent.From the recorded data, verbatim transcripts were created and used as textual data for analysis by constant comparative analysis , 13, an Between April 2018 and April 2022, interviews were conducted with participants who met the eligibility criteria. We recruited 32 people, two of whom did not participate further due to not knowing what to say. Theoretical saturation was considered to have been reached when 30 interviews were conducted .The average duration of the interviews was approximately 39 min. We conducted interviews at Hospital room(n = 11), Outpatient chemotherapy room(n = 10), Lounge(n = 7), Waiting roomn = 2). There were five participants in their forties, eight in their fifties, seven in their sixties, and 10 in their seventies or older. Primary diseases of participants included gastrointestinal cancer (n = 5), lung cancer (n = 15), breast cancer (n = 3), urological cancer (n = 4), and other (n = 3). In addition, 22 participants were undergoing chemotherapy and eight were receiving best supportive care (BSC) , concept (indicated in bold), and narrative . Outpatients with cancer-related pain control had unexpressed pain due to difficulties in communicating pain, an example of which was: “But I think it’s difficult to communicate. Because pain can be different to the person who thinks it’s painful” (Patient A). Patients also experienced resistance to narcotics from the fear of drug addiction and experiencing the painful adverse event of narcotics: “That is to forcibly stop the pain, isn’t it? So, in that sense, I think it is not good for us, so we tried to endure as much as we could, but…” (Patient B). In addition, participants had various concerns about medication, such as anxiety about side effects, difficulty in rescue opioid timing, and hard-to-obtain narcotics: “I used to take very few medicines, but now I take seven or eight in the morning, five or six at lunchtime, nine at night, and one at night. I’m getting used to it, but when I’m living a normal life, I’m not sure if it’s safe to take that many pills. I have a fear that I might get something from the combination” (Patient C). However, outpatients experienced hesitation towards consultations due to difficulty in the consultation atmosphere, consideration for the medical professionals, and exhaustion due to waiting times in hospitals and community pharmacies: “Generally, when I talk to the pharmacist, I only talk to the pharmacist when I ask for my medication, and they are just going through the motions, giving me the medication, and telling me what the medication is. They don’t know much more about me than that.” (Patient D).We constructed a storyline using each participant’s category . However, due to untreated pain and exacerbation of pain, participants had persistent pain in their daily lives: “Well, I had problems with the medication not working; and, as a result, I think it was because the dose was too low; and, as I said before, I was a patient person, so they didn’t prescribe much medicine. So, when the medication ran out, it was really hard, and I did nothing but fainting in agony.” (Patient A). Furthermore, outpatients had anguish over pain due to mental anguish, pessimism about pain, and anxiety about the future, leading to a negative spiral of pain control: “So, I’ve already given up halfway, or rather, to the pain, towards the pain, just the pain, just saying, it’s pain here. I don’t think I’m holding back, I think I’m just enduring the pain, the pain that’s right in front of me right now” (Patient F).Outpatients had Pain beyond endurance made emergency hospitalization necessary: “Generally, if I go there, in my case, they say, ‘Oh, you’re going to be hospitalized.’ But that one step is a bit. If they told me to go home again, I felt like I’d gone all the way there and now I have to go home again with all this pain” (Patient G). On the other hand, there were approaches by medical professionals such as the presence of medical professionals who always care and remote follow-up suggestions to outpatients: “When I was getting my medication, the community pharmacist asked me if he could call me at home. And I said, ‘Please.’ So, they set a date for me to contact them and that’s when I got the call” (Patient H).consistent follow-up, outpatients felt multidisciplinary support, remote follow-up reassurance, and multidisciplinary information sharing: “I thought, ‘The fact that they are calling me means that they are worried about me, and I need to do something to respond to them, like keeping a diary or something, instead of being so careless’” (Patient I).In Consistent follow-up led to teleconsultations, where outpatients received consults at home from medical professionals: “Well, he gave me his mobile phone number, the number to call at midnight, and I left him a message, and the next day he called me on my mobile phone. He said he was sorry he couldn’t reply immediately. I didn’t expect such a quick response. I just needed you to listen to what I had to say” (Patient J).encourage them to consult a doctor and they were subsequently examined by a doctor through urgent hospital visits: “I called them just to ask about that, whether I should go to the hospital or not. I was told to go to the hospital and was admitted immediately. So, I knew I needed to ask for advice” (Patient K). Outpatients experienced improvement of pain due to the appropriate use of drugs: “Honesty, well, it doesn’t go that far. It’s not that I don’t feel a little bit of some pain relief. There, you know, mentally, it’s a little bit easier than it was two weeks ago” (Patient L).When patients were not sure whether they should go to hospital, they had a medical professional The process of relief and exacerbation of cancer-related pain experienced by outpatients in the acute care hospital reveals that the provision of consistent follow-up has an important role to play in pain management, as it helps to build relationships between patients and medical professionals. Outpatients progress from a state of hesitation towards consultation to consistent follow-up owing to the medical professionals’ approach in the hospital or community pharmacy, and when their physical condition changes, patients receive consultations telephonically, leading to improved pain management. Alternatively, when outpatients exhibited endurance, their pain worsened, and they fell into a negative cycle of poor pain control. The patient was then in a vicious circle of untreated pain, pessimism regarding the future, and further psychological anguish over pain. Patients endured at home until they reached the limit of their endurance, and then followed the process of emergency hospitalization.The changes in outpatient behaviour identified in this study can be interpreted using social cognitive theory (SCT). SCT states that human behaviour is always dynamic due to the interaction of three factors: person, environment, and behaviour . We suggBased on SCT , the patEarly provision of palliative care reduces unnecessary hospital admissions and use of health services . On the Those patients who received consistent follow-up were able to improve pain without having to wait for the endurance limit through teleconsultation when their pain worsened. Palliative care for outpatients in acute care hospitals is positioned as secondary palliative care, where cancer specialists provide pain management alongside cancer treatment. None of the participants-attending physicians in this study specialized in palliative care. The approach by medical professionals and subsequent consistent follow-up by doctors, nurses, and hospital and community pharmacists who do not specialize in palliative care may function as a type of patient education and contribute to improving patient pain. A systematic review of randomized controlled trials on pain management found that patient education resulted in a statistically significant reduction in pain intensity . PatientOur findings suggest that the relationship established between medical professionals and patients through consistent follow-up has an important role in pain management, as it succeeds in eliciting active consultation from patients. However, consistent follow-up of outpatients by medical professionals through remote or in-person interviews is an initiative that has been implemented in hospitals and community pharmacies for some patients with pain control problems, and there is no mechanism to calculate a medical service fee. Consistent follow-up by medical professionals through the telephone or PC should be implemented for all patients with pain management as part of the palliative care service for outpatients. Furthermore, if community pharmacists conduct consistent follow-up, the subsequent sharing of information to the hospital is important. Previous studies have shown the importance of team involvement in palliative care for cancer patients from an early stage . The comThe study recruited subjects from only one acute hospital, which may differ from other hospitals and community pharmacy initiatives. The unique circumstances of this study need to be carefully considered before they can be applied to the palliative care of outpatients with cancer in other settings. Sampling was done by purposive sampling and at least one patient was recruited from all departments treating cancer to prevent bias in patient opinion, but selection bias due to patient physical condition considerations and the fact that the investigator was a hospital pharmacist meant that critical opinions may not have been adequately elicited. However, the processes of cancer-related pain relief and exacerbation faced by outpatients in an acute care hospital in the context of secondary palliative care, as identified in this study, focus on the psychological aspects of outpatients. Therefore, we believe that it can be applied in other regions as well.The process of relief and exacerbation of cancer-related pain experienced by outpatients in the acute care hospital reveals that the provision of consistent follow-up through remote or in-person interviews has an important role to play in pain management, as it helps to build relationships between patients and medical professionals. Alternatively, when outpatients exhibited endurance, their pain worsened, and they fell into a negative cycle of poor pain control.


Within scholarly literature as well as reports from humanitarian actors, including international nongovernmental organizations (NGOs), United Nations agencies and local NGOs, Syrian marriages are often described in static, essentialist ways that reinforce Orientalist assumptions. Based on feminist ethnographic research with Syrian women and men in Jordan, this article explores marriages in historical and intersectional context, before and during displacement. The article challenges common representations of Syrian marriages and advances how Syrian women's power and agency are understood. It emphasizes women's role in deciding to marry (or not) and discusses violence and love in marriage and resistance to proposed love marriages. Within research on Middle Eastern families, the relationship between a husband and wife has received significant focus, reflecting the emphasis on the family as a “sacred space” in the region , p. 19. As a result of the conflict in Syria, the topic of marriage has received greater attention over the last decade, with not only academic but also humanitarian actors such as international non-governmental organizations (NGOs), United Nations agencies, and local NGOs analyzing the meaning and nature of Syrian marriages. This article, in critiquing the Orientalist assumptions that sometimes accompany such analyses, takes an intersectional and historical approach to understanding Syrian marriages, drawing on ethnographic data to complicate common representations of Syrian marriages.Academic research on Syrian marriages, although limited, reveals complexities in the politics and meaning of marriage. In Syria, marriage is tied to women's position in society. Aligning with narratives from other settings about women's relationship to the state, Syrian women symbolize the nation, with national narratives shifting between women representing tradition or progress Rabo, , p. 159.In academic research on Syria, there is recognition of the tensions between stereotypical depictions of women's roles alongside examples of women exercising agency and decision-making power . SalamanWithin historical research on marriage in the Middle East context more broadly, marriage is sometimes represented in static ways. “Traditional” marriages are framed as involving passive actors and lack of love, in contrast to modern marriages which are shaped by Westernization and individualization and therefore involve romance , p. 346.Within the literature on marriage in this region, there is a noted absence of research focused on the topic of love , p. 105.These descriptions of marriage align with conceptualizations of gender norms as locational, cultural, and changing over time. “Gender norms,” which are the expected, ideal behavior of women and men, are not fixed, rather power is always shifting, varying based on age, class, and other power structures , p. 76. Scholars have examined how gender norms and patriarchy impact displacement , p. 200,International NGOs, United Nations agencies, and local NGOs have also been engaged in analyses of Syrian marriages, specifically since the conflict began in 2011. Within reports focused on gender and Syrian refugees, narratives have often centered on how displacement has resulted in more “early marriages” . Early mApart from the focus on early marriage within humanitarian reports, Syrian marriages more generally are often presented as characterized by tension associated with displacement, including housing expenses, barriers to accessing work, and protection risks. Syrian women are said to experience violence, which is attributed to societal disruptions caused by displacement . Some acIn exploring marriages among Syrians in a historical and intersectional context, this article deviates from dominant analyses of Syrian marriages which focus solely on displacement, by presenting the negotiations, conflicts, and power dynamics surrounding marriage before and during displacement. This article is based on findings from feminist ethnographic research. It unravels two common conceptualizations of Syrian marriage. Firstly, it challenges depictions of Syrian marriages as solely shaped by the decisions of older men in a family, drawing attention to multiple influences upon marriage decisions. Secondly, it diverges from dominant representations of Syrian marriage as primarily characterized by violence, drawing attention to experiences of violence within marriage, love within marriages, and resistance to proposed love marriages.Research was conducted in Jordan over 9 months in 2016–2017 to explore family relationships, mobility, and gender roles. Self-settled Syrian refugees living in Zarqa, Irbid, Jerash, and Amman participated in the research. They were largely from Dara’a, Damascus, and Homs in Syria and tended to be middle-class, with a few exceptions, which are discussed in the article. The research methods included participatory photography, semistructured interviews, life story interviews and participant observation with Syrian women and men aged 18–60, and semi-structured interviews with humanitarian workers. In this article, analysis from life story interviews, semistructured interviews and focus group discussions (FGDs) with Syrian women and men are discussed.This research was conducted from a feminist perspective that sought to center the voices of participants. Feminist research seeks to address power imbalances within research processes while generating knowledge to improve women's lives . FeminisRelationships were built with refugees through six participatory photography workshops held in three local humanitarian organizations over a 5/6-week period, with approximately 34 women and nine men attending regularly among others who attended sporadically. The local humanitarian organizations invited participants to attend the workshops, which were facilitated by the researcher and a translator. Workshops were an opportunity for socializing, eating together, and discussing daily experiences of life in Jordan using photography. The humanitarian organizations did not have a role in the sessions, ensuring participants felt comfortable to share their perspectives comfortably, including the challenges of living in Jordan. While there were passing references to marriage during photo elicitation exercises, these were limited to discussions about differences in how participants spent their time in Syria and Jordan. Participants did not discuss marriage or weddings in depth in workshops, however, detailed discussions of marriages and weddings occurred in interviews that followed the workshops. Workshop participants were invited for individual semistructured interviews or life story interviews, which occurred in refugees’ homes, cafes, restaurants, parks, or in the same organizations where workshops were held. In total, 20 semistructured interviews were held with 15 women and five men, as well as 10 life story interviews with seven women and three men. Life story interviews occurred over several sessions covering specific periods in participants’ lives: childhood, adolescence, adulthood, leaving Syria and life in Jordan. The discussion began with the question: “What did it mean to be a girl/boy growing up in Syria? Can you tell me about your childhood,” and used a similar question structure to invite narratives about later life stages. Additionally, 10 interviews were held with local and international humanitarian actors—though these interviews are not discussed in this particular article. Interviews and FGDs were audio recorded and transcribed into English, with support from research assistants. Transcripts were anonymized to ensure confidentiality.This article does not seek to generalize about Syrian marriages; ethnographic accounts may not easily “translate” to generalizable data or lessons for humanitarian actors due to their focus on depth rather than breadth , p. 193,The article explores two key themes to demonstrate the diversity in experiences of marriage among Syrian women and men. The first theme explores the role of multiple influences in decisions about marriage, challenging the idea that older men (particularly fathers) are always the decision-makers about marriage and contributing insights into women's agency and decision-making. The second theme explores violence and love in marriage, and resistance to proposed love marriages, situating these accounts in both the predisplacement and displacement periods to challenge dominant narratives about Syrian marriages.He ran after the suitors who asked for my hand and told them not to marry me and that my mother had sent him to tell the suitors her maternal cousin wants her. He didn't let them! When my suitors came, he would be on full watch mode …. ‘Her father wants her to get married but she [her mother] doesn't want you to come close to her!’Within analyses conducted by humanitarian actors and even academic literature, fathers are often presented as key decision-makers about marriage . HoweverShe further clarified the role of her mother in the marriage process: “If the mother doesn't accept this person then it is impossible for something to happen.” Her future husband recognized that there was societal acceptance of the mother arranging marriage, and sought to take advantage of this norm to deter his competitors. His actions reflected the fact that the mother was the one holding power. Zubeida attributed her mother's influence to her personality: “Even, till now, most of the mothers with an overly strong personality, if she doesn't agree to something then it's impossible for it to happen.”Everyone told me, ‘Go to dance, you are young and have a nice outfit and you don’t dance?’ Some said, ‘No one will engage if you don’t dance’. It's an ignorant mentality. Some girls even danced but didn’t take the attention of the mothers …. The dancing is for the mothers. ‘She moves a lot, she seems good’.The role of mothers in influencing marriage has also been documented in research within the region , as wellAnother woman shared a similar experience: “…when [a] mother comes and sees you in the street and admires you (laughing), like as if I am sitting under her mood …. I’m against this way.” Here, the idea is that older women exercise power in choosing younger women for their sons. Being “under her mood” signifies being subject to her preferences.She had used a girl's name for him on her mobile. I found out about this and always used to take her phone and change the password and hide it. Grandma used to come and beg to open her cell phone. When she would go up to the roof to talk to him, I would follow her, and I didn’t let her talk to him.This is not to say that it is solely women who influence the marriage process. Importantly, what emerged from this research is that a young man may exercise varying levels of power over female relatives more broadly while “learning to become a patriarch” , p. 52. In this account, Fuad deliberately inserted himself into the situation, to follow her when she was on the phone and to change her phone password, as a way of policing her behavior, despite being her young nephew. Fuad also took on this role with his sister: “My sister, if anyone wants to love her, or talk to her, she tells me. I know everything about her. That was our relationship since the days of Syria.” He added that he also has a female cousin who is close to him and tells him which men talk to her. A factor that may be relevant here is that his older brother is in love with this cousin, though nothing has officially been settled. This could be the reason that the cousin talks to Fuad about other men who are interested in her and allows him to engage these men on Facebook. Fuad has taken on a kind of intermediary role in policing who comes into contact with his cousin. Here it is unclear what the role of Fuad's father or other males in the family is, especially given Fuad's young age, and whether his actions toward females are viewed as competition or as an extension of the older patriarch's power , p. 62.Other participants also referenced the idea of a brother protecting a sister in relation to marriage as a practice that was not the result of displacement. Roula's brother, who is 8 years older than her, threatened to shoot the man she loved. She went to her father but he agreed with her brother's decision; he was scared his son would get into trouble if he hurt her suitor. She was forced to let go of this relationship: “Can you accept your love to be shot?” This brother also hit Roula because of her love for this man which resulted in her father shouting at him, but Roula still had to give up this relationship.However, the role of mothers and young men in influencing marriage does not deny the ability of girls and women to make their own decisions about marriage—or the role of women in making decisions about the marriages of young men . ParticiWomen may choose to remain single despite facing economic pressure. As a different kind of example, Khadija became a widow at age 29 in Syria. Despite financial challenges, she refused to remarry and remains single now in her early 60s. When approached by suitors after her husband died, her family told them, “It's her choice to make, it's not our business.” Her husband's family also expected her to marry again, but she told them, “No, after my husband, no! … [H]e spoiled me, no.” She had agreed with her husband not to marry again; she felt that a second marriage could result in her not seeing her children if the new husband forbade this. This is an example of how even when facing economic pressure or the need for male protection, a woman may not necessarily marry but may choose to remain single. Her relatives did not force marriage but allowed Khadija to make a choice, which may also be tied to her age and status as a widow. Sometimes marriage may restrict rather than increase options, in this case potentially limiting Khadija's ability to care for her children and breaking a promise to her husband. By exercising agency in deciding not to marry, the example of Khadija illustrates how marriage may not always be the solution to strengthening a woman's position but may at times undermine it. This contrasts with other literature that emphasizes the importance of marriage for social position .khalaṣ [that's it], that's it…. Live your life. Life is beautiful…. Things, there are things to make you happy, that will make you richer than having a hundred men.”For others, the bad experiences of married friends were a strong reason to think carefully about how marriage might threaten women's interests. Bana, a young woman, said that she has a friend whose husband does not treat her well. This husband also has a health problem preventing them from having children. She explained that this friend is “between two fires”: a disappointing marriage without children versus divorce and the “failure story” this will mean for the family. This example made her rethink her views on love: “[H]ow did he love her? He saw her when she was coming from school, and he was tailing after her until he engaged her. Love is not everything.” She added: “Some people, there are people in my age, that are married and their life is depressed. Their life, Bana's views on love and marriage echo the focus on pragmatism in marriage decisions , and werBana: If he gave me a gift, I’ll give him a gift.Another participant, Lubna, focused more on the concept of reciprocity: “If he spoils me, I’ll spoil him. If he doesn’t spoil me, I won’t spoil him.” She and Bana chatted about this in a joint interview:Lubna: No I’m the opposite of her opinion. What if he didn’t give? I’ll give him a gift and after that …. If he didn’t bring a gift then he’ll never see any gift ever again….Lubna's family recently experienced her sister's divorce and returning to the family home, which may explain her more calculated approach to receiving gifts. As the two young women spoke, they giggled about how they would engage with a future husband, including drawing boundaries to manage a husband's behavior.The accounts above suggest decision-making about marriage is complex and builds on existing research that suggests that marriage is a “collective effort” , p. 144.In my research, the concepts of violence and love were embedded within narratives about marriage. While representations of Syrian marriage often involve descriptions of women's experiences of violence during displacement, the examples below focus on both the predisplacement and displacement period, rather than displacement alone. Alongside the more common narrative about men using violence against their wives and marriage characterized by tension, it is perhaps inevitable narratives of love are less visible. Within accounts of violence, love also emerges, complicating assumptions about power and the nature of marital relationships as solely functional. Plans for marriage based on love may sometimes also face resistance, such as pushback, negative reactions or even threats.Yaʿnī [this means that], a girl's life is different from a woman's life.” In Jordan, her husband's health has worsened, affecting his ability to work and increasing the economic pressure they face. Eman blames his illness for the violence she has experienced; she feels his illness causes him to be violent. In both Jordan and Syria, her family became involved in the conflicts with her husband, interfering perhaps because he is also their relative. During displacement, perhaps in response to the greater opportunities for socialization Eman experiences compared to their small village in Syria, Eman's husband monitors her interactions with others. He accompanies her on visits to friends. Eman lost her smartphone, but he would not allow her to buy a new one. Not having WhatsApp or access to the internet restricts her ability to interact with friends and family.The concept of violence within Syrian marriage is evident in dominant humanitarian narratives about displacement, however, what is less clear is the dynamic between predisplacement and displacement violence. My life story interviews with one participant, Eman, demonstrate this trajectory of violence. Before displacement, Eman already had a difficult relationship with her husband, characterized by violence. Her husband is her cousin, who lived in the same village as her and was essentially raised by her mother. Eman did not complete her education—her father stopped her from going to school after the sixth grade. She described a mismatch between what she imagined marriage would be or what she saw on TV, and what it actually is: “[R]eality is different … responsibility to the husband, responsibility to the in-laws. This you should say and this you shouldn't say, this you have to do and this you don't do…” Eman described how her life changed after marriage: “There is no freedom anymore. talāq” that is sometimes practiced as part of Islam. Verbal divorce involves saying “talāq” to your wife three times. Although not seen as valid in some countries, it is agreed by some legal scholars to be a legitimate way of divorcing someone  and bear (dubb) have a similar sound. Over multiple interviews, Aya described how her life completely changed after marriage: what began as love turned into a relationship characterized by violence. She and her husband face significant financial pressure because it is difficult for her husband to find work. Aya is not allowed to go out unless her husband gives his permission, even to visit her mother, who lives a short walk away, though sometimes she sneaks out. She said: “[H]e likes to control me, he doesn't let me go out … He doesn't want me to go to my family, not to breathe air.” Her husband also finds other ways of regulating her behavior, including confiscating her phone and threatening to remove WhatsApp, affecting her social interactions. Aya has also experienced violence from her husband on multiple occasions, including in front of his parents, which was particularly humiliating. Aya however seemed to justify this behavior, reiterating the idea echoed by many women, that men are under pressure in Jordan and should not be bothered: “If someone can't let it out on his wife, who is there for him to let it out on?” Through tears, as she recounted the many challenges she faces, including multiple threats of divorce, Aya laughed, saying, “But it's naṣīb [fate/destiny]. Every human being takes their naṣīb in this world. Hamdu li’llāh [Thanks be to God] for everything.” Naṣīb is a cultural and religious concept referring to fate or destiny, which is recognized as playing an important role in shaping decision-making  and other relatives wanted Ibrahim as a spouse for their daughters. This engagement resulted in both of them receiving threats:Yasmeen: He's the one who took me, I didn't take him!Yasmeen was the youngest of all the cousins; her other cousins were, at least in the eyes of their parents, more ready to be married. Ibrahim was given a gun by one uncle and told to shoot anyone who came to hurt him. Ibrahim was able to defuse the situation once he knew who was making the threats. In this example, threats of violence stemmed not from the shame of choosing the wrong spouse, rather related to competition between women, which Salamandra's  researchmukhtar of the tribe, who was also her grandfather, it became a relationship of love which Khadija described as “honey” before the “onions” that followed when her husband unexpectedly passed away. In this example, love was present within an arranged marriage—building on literature that counters the false dichotomy between arranged and love marriages . She chose furniture for their apartment herself and secretly arranged meetings with her fiancé, deviating from gender norms about how future brides should behave.In this example, Zubeida capitalized on the love of her future husband, using it to exercise agency. Later, as a refugee in Jordan, she continues to use her influence to achieve her wishes, directing the actions not just of her daughters and her daughter-in-law but also of the male family members including her husband, using her age to challenge seemingly fixed gender norms and social structures . This alnāmūs!.” The word nāmūs has two meanings, referring to a gnat or mosquito, or, more colloquially referencing the right of a man to ensure virtue or honor of his household. This dual meaning is invoked to refer both to the failure of nonworking men to preserve the honor of their families, and to the fact that this behavior makes them like insects. He explained that such a person is “not a real man, he has no chivalry” and is “not man enough.” In these examples, varied expectations for how women and men should spend their time within a marriage challenge depictions of married Syrian women as passive and lacking agency  was uncomfortable. However, for others, the notion of women working is less acceptable. One older man, of a lower socioeconomic status than Hadiya, commented, “A man who sends his wife to work while he sits at home is a g agency  and reing agency .While it may be more socially acceptable for women rather than men to discuss love , p. 25, naṣīb, which makes people feel like their life scripts cannot be changed. These difficult relationships between husbands and wives also demonstrate what Aitemad These accounts of violence, love, and resistance to love marriages challenge dominant current representations of Syrian marriages. Before and during displacement, powerful ideas keep women in difficult marriages, specifically the idea that a husband is behaving this way due to an “external” stressor , or the idea of The article makes important contributions toward understanding the lived experiences of Syrian women and men, challenging dominant representations of Syrian marriages. The depiction of the social practices and norms related to marriage in this article provide important social and historical context which has implications for policy actors, including humanitarian actors . The finnaṣīb) may result in women feeling they cannot exercise agency to leave a violent relationship. Accounts of love also emerge from the findings on marriage, reinforcing the idea of love being viewed as a threat (This article also reinforces existing research on violence and control within Syrian marriages. The idea that violence is due to external forces is similar to humanitarian narratives which blame displacement for violence , p. 27, a threat  by exploWhile these findings emphasize women's agency and influence, the fact that women may exercise power does not negate patriarchy , p. 8 no


This paper explores the unconscious symbolism of the battlefield cross memorial, which is comprised of combat boots and a rifle, often with dog tags attached, topped by a helmet. While the memorial's manifest function is to provide solace, build solidarity, and convey respect for patriotic sacrifice in response to grief, the battlefield cross also exalts masculinity at a subliminal level. Because of the latent ways in which the components of the battlefield cross reinforce fallen soldiers' masculinity, the memorial provides an outlet for bereavement according to a masculine script that treats virility as sacrosanct. The resonance of the battlefield cross and its synergism with unrecognized gender coding in broader society illustrate how a powerful symbol intended to honor members of the military also valorizes machismo. This qualitative interpretation could help explain impediments to women achieving parity with men in the military. The US military is a male-dominated institution with a rising number of women that comprised about 16% of the armed forces in 2020 GAO, , p. 7. SThis qualitative paper explores in depth one specific example of subliminal coding that privileges militarized masculinity: the erection of a battlefield cross (BC) to honor the sacrifice of soldiers killed in the line of duty and to mourn their loss. While its manifest function is clear—to provide comfort to the living—the BC memorial placed on the battlefield or at the soldier's base camp also exalts masculinity at an unconscious level. The BC memorial is comprised of combat boots and a downward-pointing rifle (often with dog tags attached) that is topped by a helmet see .semper fi, US marines' Latin motto , the BC confers a sort of immortality through the consecration of these symbols as a way to resurrect the masculinity of fallen soldiers.This paper presents an interpretation of the BC that suggests its symbolism reinforces masculinity post-mortem, that is, in perpetuity. Like This interpretation of how the BC helps inculcate the notion that men are best suited to be warriors is not an attempt to deny or dismiss either the practical or sentimental facets of the individual elements of the BC—nor the solace that the monument undoubtedly confers in the entirety of its assembled components. The intent is to illustrate how the BC advantages men by honoring symbols associated with masculinity. In turn, the way in which the symbolism reflects masculinity could increase the alienation that some women experience among those who grapple with “dissonance between being feminine and identifying and serving in a hypermasculine job field [that] is psychologically taxing”  for fallen soldiers has evolved over time:Beginning with the Gulf War in 1991, and during Operations Iraqi Freedom and Enduring Freedom, the latest version of the battlefield cross, rifle, helmet, boots, and dog tags, has become the symbol of loss, of mourning and closure for the living.“Although it is called a cross, the memorial has no overt religious context. It's not hard to interpret the placement of the boots or the presence of the dog tags: the soldier has marched the final march to battle, and he will never be forgotten” , like objects that can stand for something other than themselves. For example, objects may be perceived according to how they are interpreted as signs. Semiotics elucidates the connections between these mental representations of the external world and the internal world of ideas. Of note, Peirce believed that these ways of seeing commonly operate at an unconscious level Danesi, . InstancHow our actions resemble performers on a theater stage applies to the BC Goffman, . The BC https://www.definition-of.com/ for terms like helmet halva and helmet pelmet). “Helmet” is also slang for condom  involved in predominantly-male professions where their use is standard. Hard hats are linked to toughness and rugged masculinity in contrast to other PPE  like respirators and hearing protection that are believed to connote weakness .Helmets share symbolism with other military hats that also have phallic qualities. For example, symbolism relevant to this paper appears in the famous late-18ls Horn, ]. The duls Horn, , p. 4 stls Horn, , p. 478 The argument that helmets are phallic is consistent with historical ways in which they could be made more masculine by plumage. While feathers are polysemic , they aTo emphasize the wearer's masculinity, plumed helmets and hats were worn by high level officers, complete with tassels and an erect plume, literally embodying the notion of “a feather in one's hat.” In contrast, women's feathered hats seldom included erect feathers and were worn outside of a military milieu. Plumed bicornes followed the tradition of plumed turbans to signal bravery, modeled after the Ottoman tradition of a plume signifying military merit.Ralliez-vous à mon panache blanc!”: “Follow my white plume!”  displays plumage of armored men in a tournament, with a description of the exhibit noting that the actual feathers in the knights' helmets could extend up to two feet beyond the height portrayed in the exhibit  beginning around 1500 and was allegedly popularized by King Henry IV of France (1553–1610) and his battle cry: “Dencher, . The blaOutside of the US, soldiers' bearskin-style busby hats sometimes have plumes  while the elite Bersaglieri of the Italian Army currently wear feathers in their combat helmets. Their plumed helmets signal that they are an “aggressive, battle-hardened military fighting force [in which]... plumes are a badge of honor, attracting new recruits and fostering esprit and solidarity among a proud Corps of soldiers  and in reality  commonly wear one or more feathers in their headgear to signal masculinity, often with nuances conveyed by the upright positioning and feather height  incorporates guns . While an arm is obviously not a phallus, it could be that an arm is upward displacement of the phallus.The next and center component of the BC, the rifle, evokes an armed soldier, prepared to dominate enemies. The notion of an Beyond Freud's assertion that guns (and other weapons) are phallic Freud, , there iAssault on a friendly weapon, buffing the rifle, cleaning your rifle, cocking the magic pistol, cocking the rifle, emptying your sex pistol, firing the love rifle, one-gun salute, shooting enemies, shooting the pump-action porridge gun, skeet shooting, target practice (with white ammo), unloading the gun.“Interestingly, the female counterpart, oiling the holster, places women in a receptive and secondary role”   about US Marine Corps recruit training  warfare” Dundes, , p. 77. nd Amendment appears to be more important to men than women  was Saddam Hussein's 9-mm Glock 18C, seized when the Iraqi president was captured in Operation Red Dawn in 2003. Bush reportedly enjoyed showing Oval Office visitors the gun and telling them that it was not loaded James, ; (3) BusBoot symbolism remains relatively unrecognized, even though the word “boots” is a metonym for soldiers (as in “boots on the ground”), which is consistent with how “the predominant symbolism of boots has been masculine and militaristic” Steele, , pp. 129Stylistic differences in boots can heighten their phallic symbolism. Unlike basic boots in the BC, boots of higher-ranked officers may include signs of such status. For example, Hessian boots have tassels that hang down from the top center of the boot Beard, . These tIn an otherwise unexplained example, male motorcyclists, commonly concerned with machismo, may affix leather tassels (and dog whips) to their handlebars as an unconscious display of masculinity. These tassels ostensibly complement “the biker boot [that] symbolizes a big penis and an ultra-masculine persona” Steele, , p. 144.While for cowboysboot camps. Similarly, “jocks” are presumed to be male athletes who are reduced to jock straps that protect the genitals. Likewise, the word drill in “drill instructors” who are responsible for instilling military discipline, physical fitness, and weapon readiness, is likely related to its meaning to pierce and perforate (and feminize). Furthermore, “like the tool and action the word originally defines, drill is intended to evoke violent and sexual aspects of a hard-hitting lifestyle or circumstances” , in which he is reduced to a hat and boots, boot camps traditionally make men into warriors, equating them with boots. Of all the terms that could be used to identify these training camps, it is not an accident that they are called ” Drill, . At a syCourtesy of the Red, White, and Blue (The Angry American), a tribute to military forces that aptly captured the desire to compensate for the vulnerability of the US on September 11, 2001 . The song was an attempt to reassert masculinity and boost morale post 9/11 by referencing patriotism.How boots can be instruments to feminize the enemy is apparent in Toby Keith's famous post-9-11 song The song was a hit with US armed services in Iraq: “Bombs were branded with it. One of the first tanks into Baghdad was, as well” Leung, . The sonThis imagined act of enemy humiliation through anal penetration and thus feminization is the same reasoning to “have someone's back” and to CYA (cover your ass), i.e., to prevent the dishonor of feminization through rear penetration Dundes, . The milKinky Boots (2012) Broadway musical song, “Sex is in the Heel” connotes this meaning, given that the spiked heel conveys “the power to dominate and even penetrate” . Thus, by appropriating phallic power (boots for combat), a woman not only negates her ascribed maternal role, but also feminizes the men in the family; in other words, a woman—and not a man in the household—is the cock of the walk.It is important to point out that a similar comment about a male is far from an insult, but rather confers bragging rights, as the following internet meme reveals:.Historically, the horizontal length of boots could be patently phallic .botas picudas mexicanas with picuado derived from picar, to prick or pierce, slang for “to sexually penetrate” in Mexico  and other phallic symbols, have shafts (as does a penis), meaning the height of the boot rising above the foot. This not only supports the unconscious phallic meaning of a boot, but also serves as another example of how sex and aggression may conflate since the verb shaft is slang both for a man having sexual intercourse y Shaft, , whereinBoot shining is traditionally a key part of standards for the appearance of members of the military called “spit and polish.” The spit and polish standard also applies to public spheres where even “off-duty service members have a duty to project a ‘spit and polish' image to the public, wherever the public may find them” Jurden, , p. 12. Applying a psychoanalytic lens, boots–and guns–are polished to instill pride that also reflects their phallic symbolism. In the case of guns, sperm oil was the lubricant of choice historically . Interestingly, an inferior form from bottlenose whales was sometimes incorrectly called “Arctic sperm oil.” Maintaining the shininess of jackboots, a large leather military knee-height boot, was “something of an obsession” referred to as “jacking” . Bulls are symbols of masculinity Dundes,  while spOutside of the military, those giving and receiving shoeshines were historically male. In rare instances where women engage in the practice, the act is overtly sexual, as with the Star Shine Ladies: “youthful young women [who] polish clients' shoes in tight, revealing attire. It's like Hooters, but fewer wings” Taylor, , para 6.,The care of boots and shoes became linked to masculine self-sufficiency, as seen in the 14-year-old shoe shiner or bootblack, Ragged Dick, the subject of Horatio Alger's famous Bildungsroman  about rags to respectability reflecting the Protestant work ethic. These novels strengthened the connection of boots to bootstrapping and the notion of independence implied by “pulling oneself up by one's own bootstraps” Rooks, .22 In adThe remaining element of the BC, dog tags, are often placed under boot laces or draped over the buttstock of the rifle. While dog tags function to provide some sense of individuality to the BC, there is also relevant symbolism related to dogs. Dog tags as a label of sorts link men to dogs, likely related to how dogs are presumed male Leach, , and thuEvidence for the connection between dogs and masculinity is varied. For example, in a well-known nursery rhyme, little boys are linked to both puppies and tails: What are little boys made of? Snips, snails, and puppy-dog tails . In another example, hot “dogs,” which could be any shape but look nothing like dogs, are called wieners and artificially colored to be pinkish to transform them from gray (to more closely resemble the color of Caucasian skin)  sailor who has spent much of his life aboard a ship at sea. Furthermore, dogfights are a blood sport in which a largely male audience bets on male dogs with hopes of bolstering masculinity , the stanza preceding the “boot in your ass” line likens the US military to a “big dog” that “will fight when you rattle his cage” with martial repercussions for those that “messed with the USA”, reminiscent of the World War I battle of Belleau Woods that spawned the Marines' name “Devil Dogs,” a prized moniker signifying ferocity in combat.An additional means of exploring the gendered implications of a dog tag is through analysis of the word bitch. A woman deemed “dominant” might be called a “bitch” , terms that imply weakness.Thus, a bitch is either a strong woman (counter to her ascribed role) or a weak male , semantic meaning embedded within the anthropomorphic semiotics of dogs presumed to be male. This also helps to explain why women who call each other bitch may find it empowering  while men are unlikely to feel empowered by calling each other bitches or pussies  swashbuckler, Puss in Boots. Although a “puss” (a cat) is not inherently masculine, a puss kurgans (grave mounds) in the southern Ural Steppes near the Kazakhstan border in Russia have corroborated artistic renderings of such equal participation, e.g., battle wounds (arrowheads embedded in bones) and the burial of women with adjacent weapons  perpetuates hypermasculinity while reinforcing conventional gender roles. The means for soldiers to gain the imprimatur of masculinity also raises questions about women's fitness for active military service:“[A military recruit is] probably more than ready to accept the military's gift to him of the image of enhanced [phallic] power. The military, in turn, is more than happy to give its recruits an image of sexual power if they are willing to fight and die for it” Trnka, , p. 239.Along the same lines, the phrase “wounded warrior” compensates for wounded men's inability to fight by attaching the tag of warrior . By conflating hypermasculinity with patriotism and valor, cultural cues like those in the BC function to encourage military service despite the horrors of war.Symbolism of the BC also suggests that having women in the military conflicts with the BC's embodiment of masculinity, a nexus that could deter women but that also could attract voluntary warriors seeking not only to “serve their country” but also an imprimatur of masculinity. Performing masculinity does not end with a soldier's death, but rather is re-broadcast by the BC on a frontstage platform. From this perspective, erecting BCs could help assuage doubts that might surface during the course of this perilous commitment. At the same time, the symbolic phallic resonance of the BC also could play a role in solidifying the maleness of the military while minimizing women's comfort and influence in military matters. To expedite substantial progress toward gender parity, we should take into account how symbolism links masculinity to military prowess.The original contributions presented in the study are included in the article/supplementary material. Further inquiries can be directed to the corresponding author.The author confirms being the sole contributor of this work and has approved it for publication.


Prenatal genetic testing, in particular non-invasive prenatal testing (NIPT), as well as screening for risks associated with pregnancy, and counseling, play pivotal roles in reproductive healthcare, offering valuable information about the health of the fetus to expectant parents. This study aims to delve into the perspectives and experiences of women considering genetic testing and screening during pregnancy, focusing on their decision-making processes and the implications for informed consent.A nationwide qualitative study was conducted in Switzerland, involving in-depth interviews with women who were 1 to 2 years post-partum, covered by basic compulsory Swiss insurance, including women with a migration background. Thematic analysis was employed to identify key themes and patterns in the data.The findings underscore the significance of effective communication during prenatal counseling, suggesting that healthcare providers could not only convey technical information but also support women in their decision-making processes. Women need comprehensive information about genetic testing and its implications, as well as the reasons for screening during pregnancy, as there might be a need to bridge knowledge gaps and clarify misconceptions. Furthermore, the study highlights the multifaceted nature of decision-making, with women considering factors such as uncertainty, values, emotional responses, and societal support systems. The concept of acceptance emerged as a crucial theme, with some women expressing their readiness to love and accept their child, regardless of genetic anomalies or disabilities.This study offers valuable insights into the perspectives and needs of women regarding prenatal genetic testing, screening, and counseling in Switzerland. It underscores the importance of enhancing the clinical interaction and informed consent process by providing comprehensive information, addressing misconceptions, and supporting women in decision-making about pregnancy management and the management of the child’s health, following prenatal genetic testing, including NIPT. These findings can inform healthcare providers and policymakers in improving the quality of prenatal counseling, ensuring informed consent, and supporting women in making well-informed and meaningful decisions about genetic testing, and on the use of screening during pregnancy.The online version contains supplementary material available at 10.1186/s12910-023-00964-3. Pregnancy has been posited to be an epistemically transformative experience , 2, in tDespite the possibly complex psychological shift some women might experience, they are nonetheless required to navigate the processes associated with pregnancy from the position of their present-day selves. In terms of the medical experience of pregnancy, women need to have a broad understanding of both the medical and non-medical issues encompassing psychological and medical health issues such as pregnancy-induced diseases, foetal development, the birthing process, and post-partum recovery.Medical decision-making is challenging as patients are presented with often complex information, unfamiliar medical terminology and the need to interpret and apply statistical data to their individual situation. On top of this, many medical decisions in pregnancy present additional ethical challenges for women. One such challenging decision is to undergo prenatal testing for chromosomal abnormalities, since these may be associated with miscarriage  and mighNon-invasive prenatal testing (NIPT) is a development in prenatal testing, in which fragments of the fetal genome obtained from the maternal circulation are analyzed for fetal abnormalities, with a high specificity and sensitivity –7. NIPT The choice to undergo NIPT encompasses the spectrum of challenges in pregnancy decision-making. For instance, pregnant women must decide the degree of medical involvement in the management of their pregnancies, have to evaluate and understand the significance of the functioning and results of such tests and their limitations, including the conditions being tested for, contextualizing the impact on their present situation, their future self as a potential parent, and that of their potential future-child, and decide on the follow-up actions of invasive testing and whether or not to consciously continue with the pregnancy.Empirical research on NIPT has frequently focused on practical and procedure-based considerations, aiming to guide its implementation within health systems –15. ThisIn Switzerland, prenatal genetic testing is widely available for expecting mothers since 2012 , and sinWe designed a qualitative study using narrative inquiry according to the DIPEx methodology –43 to exThe interview data was given a code, and uploaded onto a secure server hosted by our research institute, with access provided exclusively to the research team. All interviews were transcribed verbatim. Identifying information was anonymized. The initial coding structure was developed coding interviews in English, German, French, and Italian by native speakers in our team . Once the coding tree was consolidated, German, French, and Italian transcripts were securely translated into English using the automated translation service DeepL Pro so that all researchers could understand their contents, although further processing of the data was done in the original language of the interview by our multilingual team. No interview data was stored by DeepL Pro. The finalized transcripts in their original language were uploaded into MAXQDA and coded. The coded data was then thematically analysed. The entire methodological process has been described by Spitale et al. 2023 .She announced one examination before that she will ask me about that (NIPT), and she gave me a brochure. She said read that, and then when you come next time we make it (the test) or we don’t make it.PPT36_E23S, 01:10:41 – 01:11:00In this section, we focus on communication with medical staff, including physicians, OBGYNs, nurses, and genetic counselors, in relation to genetic testing specifically. For most interviewees, this referred to NIPT, although other prenatal genetic tests and other prenatal tests mentioned in association are included here. In general, counselling seemed to focus on the procedural and administrative aspects of testing. Almost all participants were informed of the relative costs of NIPT compared to the ‘standard’ first trimester screening tests, and were told their eligibility for insurance coverage based on their risk profile. Very few participants were counselled about the qualitative test findings, such as the conditions tested for, and were mostly given brochures to read in their own time. While some felt they could then clarify the set of information provided in the brochures with their doctors, others felt their doctors were not able to adequately answer their questions.I was even on quite heavy blood thinning medication at the time and I had been told repeatedly not to get pregnant on those. One morning I woke up and I thought “Weird, I think I have pregnancy symptoms,” after three times you kind of know. (…) I remember the phone call coming (NIPT results) that everything was okay and confirming the sex of the baby. There was a massive release—relief for everybody.PPT05_E5S, 00:11:52 – 00:12:07; 00:13:50 – 00:13:59Some mentioned that they did not feel guided by their doctors to think about what to test for, the potential consequences, and possible follow-up actions. Some participants were misinformed about the certainty of NIPT compared to other screening tests, perceiving it as certain from a diagnostic perspective. Some participants were also misinformed about the range of conditions that NIPT could screen for. For example, a mother who fell unexpectedly pregnant while on warfarin, a drug typically used to prevent blood clots from forming that can lead to miscarriage or birth defects, and was concerned about its teratogenic effects chose to do NIPT to reassure herself, even though it would not have been possible to test for these using NIPT.Interviewer: How were you counseled about NIPT?Interviewee: I wasn't at all. No, I just counseled myself.Interviewer: Ah, okay. And then you- did you tell the doctor that I want to do this? Or did she actually mention it to you?Interviewee: No, no, I told him.Interviewer: Aha, and how did he respond?Interviewee: (laughs) He um, um, he was fine, my doctor was fine with everything. Um, I actually brought him the [commercial name of the test], like marketing sheet and I said, "Okay, I want to do this test".PPT22_E12I, 00:38:39 – 00:39:13Interviewer: Did-did your doctor tell you about the – I mean I know that you initiated it and you told him most things that you wanted to do but did he actually tell you again what are the benefits, or the harms [of the test]?Interviewee: No, no, he just said, "Okay, if you want, it's fine and we'll go tweak the measurement.". So he was– And I think, I started the discussion because he could- before he could even do it.Interviewer: Yeah. And then did he tell you about making future decisions. Like, "If you do this then we might have to think about sending you to a genetic counselor or you might have to think about termination or whether not you wanna keep the child." Was that something that he spoke about?Interviewee: No.PPT22_E12I, 01:23:25 – 01:24:07Not all participants were informed about NIPT by their doctors. Some managed to independently source marketing material for NIPT, which they then brought to their doctor’s office. Many felt their initiative and insistence on testing made them appear sufficiently informed and educated about genetics and NIPT. As a result, their doctors did not provide further counselling, raising issues of professional duties in informed consent.I think some emotional support there would actually be very sensible, and obviously in particular if there's any type of risk.(…)I think starting a conversation (…) about how you feel about it, or what are your thoughts on/ maybe understanding the patient's needs more than assuming, the standard options, which you can always fall back to, you can say, look, this is the standard option. I mean, honestly, I wasn't even aware of what other options there are.PPT12_E8I,  01:02:18 – 01:03:13Others did not realize NIPT was an option at all, despite raising personal concerns about inheritable physical and mental conditions. One such interviewee only realized upon reflection post-pregnancy that there were alternatives to the ‘standard’ routes of testing she was offered that could have answered her real concerns based on her family history . Another, whose child had shown physical deformities on prenatal ultrasound, was told by her doctor that even if they did find chromosomal abnormalities, there was ‘no doctor in the world’ who could help interpret this information in relation to the life, health and wellbeing of their child, and that all people could have abnormalities they were unaware of, and live ‘perfectly fine’ with it . Many also felt they could have been better supported emotionally in discussions about prenatal testing.In retrospect, we felt a bit caught off guard, because at first we didn't want to do anything and then we realized, ah, now we've seen it anyway. Yes, I think it's a pity that doctors don't point out more what the consequences of every test, of every examination you do are. That one should also consider if someone doesn't want to do this first trimester test, then we don't do a measurement of the nuchal fold.PPT34_G8S, 00:41:23 – 00:42:01Emotional support is also important as pregnant women may struggle with insecurities about the health of their pregnancy and fetus, making them vulnerable to agreeing to tests they might not want or need. Two participants in particular were notably vulnerable compared to the rest. They were informed of being at high risk for trisomies despite explicitly stating that they did not wish to do any prenatal screening, but felt subsequently compelled to follow-through with more extensive testing, including invasive tests. They were not aware that the nuchal translucency of their fetus was being measured while undergoing an ultrasound, and did not question that an ultrasound was performed as these are seen to be done routinely in pregnancy. They mention the importance of determining and respecting the limits of screening, and emphasize that nuchal translucency tests should not be done if someone does not want prenatal screening.She said 1:2 or something, 10,000: 20,000. I suppose it was a good ratio. A better ratio would have been 1:10 or 1:100.PPT30_E19S, 01:14:05 – 01:14:14The concept of ‘risk’ was often used to direct conversations about NIPT. Many interviewees struggled with understanding risk based on numbers and ratios. For some, a low risk, such as 1 in 20,000 chance of a genetic abnormality, was still perceived to be an issue, as they felt they could be the unlucky ‘1’. Others flipped the numbers around so that the numbers reflected having a child without a genetic abnormality. In this way, even a ‘high’ risk such as a 1 in 10 chance of a genetic abnormality was reassuring, in that 9 out of those 10 children would be born without the conditions screened for .Right from the start I said, “Look, you know, we both have disabled people in our families, we both know what this means for our family and that it can be a huge thing, and I really want to know as much as I can, whether there's any sign of a disability or not.” The doctor didn't enter into that conversation much because he just said, “Well, you know, we'll still do the standard tests and see what happens.”PPT12_E8I, 00:14:23 – 00:14:50Risk was also used as a gatekeeper to test access for some women. Although the test could potentially be paid for out of pocket on the request of the patient, some women were directed by their doctors to follow the standard protocol, with additional tests entertained only if the ‘risk’ deemed it necessary.I know that Down’s syndrome touches a bit the brain, I don’t have the details, but I know that they are people who probably live in their world, they are happy in their world as they are and many times they are marginalized when they could be better people than others who don’t have such problems. (…) All I can tell you is that I saw them happy, happy and serene.PPT15_13S; 00:54:34 – 00:56:04Among respondents with knowledge of genetic abnormalities, the most useful information was derived from reflecting on personal experiences or the experiences of others. In general, there was a divide between Down’s Syndrome, that was unanimously seen as positive in terms of character and quality of life, even though most respondents also recognized that the severity of Down’s Syndrome existed on a spectrum, and ‘other’ genetic syndromes or disabilities – which were thought to be mostly a cause of multi-organ dysfunction , suffering, and overall a poor quality of (short-lived) life . People with Down’s syndrome were described as genuine, warm, sociable, and happy – perhaps even more so than a person without trisomy 21.In spite of this positive impression, many were wary of the care-giving tasks required of them, seeing the dependency of a person with Down’s Syndrome as ‘imprisoning’ and concerned about the future when the parents are old or no longer around. They also expressed concern of the cruelty of the world towards these very amiable people .Trisomy 18 or something is so rare that for me that’s not a reason to do the testing because it’s too rare. That’s an important thing for me. Trisomy 18; I would have done an abortion in all cases, but it’s so rare that there is no sense for testing in my eyes.PPT31_E20S; 00:59:24 – 00:59:48Disabilities and genetically inheritable conditions other than Down’s Syndrome were less well known and understood. The most commonly mentioned trisomy that concerned respondents was Trisomy 18. Although trisomy 18 was a concern, one participant mentioned that she would not test for it because of the rarity of the condition, despite intending to terminate a pregnancy if the child had Trisomy 18.While most information about Down’s Syndrome was experiential, knowledge about other conditions were mostly obtained through the doctor’s office. Respondents mention receiving a booklet, or being given advice to take supplements from their healthcare providers. In spite of the information received, they do not seem to know much about any of these conditions.Interviewer: Where did you get the information from?Interviewee: Google Scholar pretty much. Just looking at various articles, academic articles. In French, there is Orphanet which is all the rare diseases and they have a little section on Trisomy 13. Something else that really helped for the second pregnancy was Facebook groups. There’s a dedicated Robertsonian translocation Facebook group, and there’s one on Trisomy- like on the 13, 14 specifically. That is like a wealth of information. Part of it is anecdotal, but if you pull all of it together, you do get a lot. Some people were working directly with experts, they were sharing their information as well, that was also very, very helpful.PPT29_E18I, 00:25:41 – 00:26:39One participant who found she had a translocation that predisposed her to conceiving children with trisomy 13 described how her own research on scholarly websites and her interaction with social media helped her source, understand and contextualize the information she needed. Doctors were not able to adequately respond to her concerns. Other sources of information mentioned by participants included stories, internet resources and the media (via television/youtube).We all have difficulties sometimes we don’t even know, unless we actually get ourselves tested. So for me, it doesn’t bother me. It’s just means that I have to, get to know my child in a different way, and accept them for who they are, and find the ways to best help them.PPT05_E5S, 00:31:29 – 00:33:01Most respondents rationalized that humanity existed on a spectrum, with no authoritative definition of ‘normal’. There was recognition that complications not prenatally screened for may arise later in life (PPT05_76), and that we ourselves may have undetected genetic issues.In honesty, nothing at all, and between having my first child and second child, I met up with friend’s of mine, whose sister has Down syndrome, who I haven't seen, the sister, between when she was a child and an adult, and I was quite surprised – this is so awful, it’s so prejudiced, but I was really surprised how we could have a really good conversation.PPT10_E7IS, 73–77; 00:12:21 -00:12:49Some respondents recognize they were unprepared for life with a person with a disability. This view was sometimes changed by interactions with people with disabilities, which contextualized the theoretical information that a participant might have had.“I don't know what we would have (done), and I don't think you can necessarily know till you go through it.”PPT20_E10I, 00:28:33 – 00:28:43The topic of prenatal testing and screening was fraught with uncertainty, affecting participant confidence in decision-making about pregnancy management and fetal health. Participants contemplated a range of scenarios they described as hypothetical, with many describing carefully considered positions on complex topics, followed by acknowledging their uncertainty when confronted by an actual decision:Topics described as hypothetical included pregnancy progression, prenatal testing results, abortion decisions, emotional reactions to an abortion, life with a disabled child, quality of life of a disabled child, attachment to their prospective child, and support from their social environment.. A handful of participants recognized shifting values over time, affecting their decisions. This most often happened after life-changing events, such as the birth or loss of a child. Some mentioned they not want to re-live the pain of losing a child, even if the new child they carry had genetic anomalies . Others recognized the connection between a foetus and a child after giving birth and were inclined to continue a pregnancy regardless of the health or genetic status of the prospective child, even if they felt differently before.Before I got pregnant, we both said that if a test indicated a very high probability of the child being disabled, or if we’d known for sure even that the child was disabled through scans or whatever, we would have probably opted for an abortion.We were both pretty clear on that impact on us. We knew about how big this type of impact can be, and we, at least at that stage, were not willing to go for that. I must say interestingly both of us, on the second pregnancy, were less clear on, on that choice. (…)Having had the first child, and gone through the process and having this you know cute boy, I mean, you know, this embryo will become a child, right? A disabled child or a healthy child or something, but the link between the life, the later life and the embryo is stronger once you've seen it once. And choosing to end that link is a harder choice then. We then actually pre-decided not to decide, so we then decided on the second pregnancy that, we would decide if we got into the situation where a test indicated a high probability of some disability.PPT12_E8I, 00:12:18 – 00:13:34According to our interpretation, the degree of uncertainty expressed by participants corresponded to a sense of abstractness, and directly impacted their ability to make meaningful decisions. Some participants counteracted this by contextualizing the medical information received. This often happened incidentally through chance experiences with people with disabilities, and sometimes intentionally, through researching and connecting with others in similar situations. Apart from understanding health issues from a medical perspective, access to patient narratives helped parents understand how the lives of others were impacted by these issues, coping strategies, potential outcomes, and the available social, financial and medical infrastructure. Participants recognized the emotional aspect of these decisions was not always predictable. Many took it upon themselves to make a decision beforehand, so as not to be affected by their emotionsWe also knew, or rather we had also decided against these tests, because we were of the opinion that we would be able to lead a good life, a fulfilled life, even with a restricted child.PPT34_G8S, 00:53:30 – 00:53:46Participants who struggled with decision-making under conditions of uncertainty found various cope strategies. One strategy was boundary setting, for example by limiting prenatal testing or screening, limiting visits to their gynaecologist, and being clear of the purpose of these visits.I think I know better now what I want. I feel like I could be more assertive with medical staff. Because I now know that not everything they say is true. You hear so many different opinions. One nurse tells me this, and another one tells me that.PPT07_G1S, 01:22:38 – 01:22:54A second way was by deferring to an external authority. Participants generally trusted their doctor’s competence, and assumed that the authorities considered morality as part of their guidance. In our interpretation of the data, participants following medical advice therefore interpreted standardized prenatal tests as acceptable and ethical. A small number of participants however were able to recognize that medical opinions differed among different professionals, and were neither always neutral nor ‘correct’.My mind would have wandered to all these questions which are totally unnecessary to ask yourself because it's such an abstract situation, and once the child is here, it's your child and you feel about, you feel so much love.PPT19_E9S, 00:50:33 – 00:50:54Many participants mentioned the need for acceptance. The concept of acceptance was applied in different ways. For some, this meant the acceptance of differences and supporting the development of an inclusive society . For others, acceptance referred to letting go of the sense of control and security prenatal testing provided, realizing not only that prenatal testing was not comprehensive, but also that a multitude of non-genetic issues could complicate the pregnancy and the health of their child. Lastly, almost all participants mentioned they were likely to love and accept their child at birth, regardless of its health or genetic anomalies. Interestingly, almost half of interviewees underwent NIPT screening, suggesting that their predisposition to accept and love a child with special needs is not dependent on expecting mothers’ willingness to undergo NIPT testing.If it's something that could have been detected, for example, if I had refused to have scans, and then boom, something happens, then I would feel guilty.PPT29_E18I, 13; 02:08:19 – 02:08:25At the same time, some still felt a sense of responsibility to prenatal testing and screening, mentioning the guilt they would feel if they chose not to test and the pressure they faced by the medical system towards testing and ‘normality’.For us it was clear that if the child had had trisomy 21, then this would stay with us, then we would find a way that satisfied us all. We are also ready to change our lives and change does not have to mean that it becomes bad. It can also be, or it will also be, a change for the better. You would just have to give up certain things, but you have to do that anyway.PPT34_G8S, 00:53:52 – 00:54:16Parents were also concerned about the lack of social support, based on their observations and discussions with others in similar situations . Most of those who shared this view considered termination of pregnancy a possible follow-up action, with one drawing a parallel between abortion and euthanasia . Other participants compared life with ‘normal’ children to life with a potentially disabled child. They acknowledge that life is changed drastically by the addition of any child, and so sees the change as a matter of expectation and adaptability to the specific child.The medical community has made efforts to align genetic testing and prenatal screening with the parental values, primarily through careful counselling and the shared decision-making approach –49. Our One aspect of professional responsibility that needs to be emphasized is differentiating standardizing information provision from standardizing prenatal care. In the experience of women interviewed, doctors deferred to insurance coverage and ‘standard’ testing as gate-keepers to further prenatal tests. Health providers need to be clear about the purpose of these tests and recognize that the choice of undertaking many of them is based on individual, subjective values or preferences . As suchIn line with previous research, we claim that standardization is required however in the provision of information , 55. ManThe need for certainty both on the part of parents and gynaecologists –26, 67 hThis was a nationwide study, and care was taken to include migrants and underrepresented minorities. At the same time, there are significant cultural differences even among the Swiss population, especially between the different language regions. It would be worthwhile to explore the needs of women in specific cultural groups in depth for a more nuanced and differentiated approach to the prenatal counselling process, as women may raise culturally-specific needs and concerns .Unlike many other countries, the Swiss population is insured through a mandatory basic insurance scheme. This may limit the applicability of our findings, especially test uptake, to other countries where the financial affordability of healthcare is a greater concern.n = 1). It would have been valuable to have a broader perspective from women who had partaken in prenatal testing and chosen to terminate their pregnancy on that basis.In spite of the best efforts of the research team and our collaborators, it was particularly challenging to recruit women who had intentionally terminated their pregnancy  given the resource limitations of the clinical setting.Additional file 1. Additional file 2.