Results: A total of 83.9% of respondents have experienced SV. A total of 61.3% were victimized within the past year. Victimization seems more gender-balanced than in the general population. AIPs link SV to their legal status and their associated vulnerable situation. HSB upon SV was very limited in this sample. Help-seeking barriers interfering with the decision-making process to consult (in)formal resources were identified. Conclusions: AIPs in Belgium are at high risk of SV. Despite the impact of SV on AIPs’ lives, HSB upon SV is rare. The provision of age-appropriate sexual education and development of policies that will reduce help-seeking barriers is needed.Background: Sexual violence (SV) literature on applicants for international protection (AIPs) shows that they are at high risk of victimization. The study objectives are to provide an exploratory overview of the occurrence of SV in AIPs in Belgium and their help-seeking behavior (HSB). This overview is crucial to develop prevention strategies and care paths focusing on providing adequate care to AIP SV victims in Belgium. Methods: Quantitative data from structured interviews with AIPs ( Sexual violence (SV), defined by the World Health Organization (WHO) as “every sexual act directed against a person’s will, by any person regardless of their relationship to the victim, in any setting” , is a wiIn the limited available studies on sexual victimization in AIPs in Europe, AIPs report sexual violence exposure in their country of origin, while en route, and upon arrival in host countries. In a study from Doctors of the World  in 10 European countries and Canada, 21.1% of the reported rapes and 17.7% of the reported sexual assaults took place after the arrival of the victim in the host country . A studyMost studies have focused on female victims alone , yet somThe impact of sexual victimization on their lives may also be far greater than in the general population because of specific risk factors emerging from the vulnerable situation AIPs find themselves in . IdentifMany European countries, have been under higher migratory pressure in the past several years. To develop prevention strategies targeting sexual victimization in AIPs and care paths focusing on providing adequate care to applicant for international protection (AIP) victims of sexual violence, having an overview of the occurrence of sexual victimization and help-seeking behavior (HSB) upon sexual victimization in this population is crucial. Aside from knowing the magnitude of the problem, understanding the impact of the phenomenon and the associated HSB is vital. Furthermore, insights into the decision-making process underlying seeking help upon sexual victimization is essential to provide care matching the victims’ needs . In ordeAre AIPs residing in Belgium vulnerable to sexual victimization?In which context does sexual victimization in AIPs occur?How does sexual victimization impact AIPs?Do AIPs residing in Belgium seek help upon sexual victimization?The objective of this study was to answer the following research questions:This study was approved by the Commission for Medical Ethics of Ghent University Hospital/Ghent University (B670201837542). It was designed and performed in line with the principles of the Declaration of Helsinki. This study only included participants of 16 years and older given ethical and practical regulations related to the legal age of consenting to sex, which is 16 years old in Belgium. All participants gave informed consent before initiating the online survey. Additional informed consent was given before starting the in-depth interviews.This study was conducted by using a mixed-methods explanatory sequential design. This design implies that quantitative data is first collected followed by qualitative data in two consecutive phases of one study ,23. SuchThe first phase of the mixed-methods study entailed a quantitative study using a survey. This survey was conducted via laptop- or tablet-assisted face-to-face structured interviews. In preparation of the quantitative and qualitative study, we conducted a critical interpretive synthesis (CIS) of relevant literature see ,15). The. The15])The initial goal of the quantitative study was to conduct a self-report survey probing sexual victimization and perpetration among a randomly selected sample of AIPs aged 16 to 100 residing in any of the asylum reception facilities in Belgium, regardless of gender or sexual orientation. AIPs are a hard-to-reach population. Therefore, data were collected via face-to-face interviews by trained interviewers to increase the response rate and to allow persons with lower literacy levels to participate . The surIn the preparatory CIS regarding the design and comparison of sexual victimization prevalence studies in AIPS, one of the main problems identified was the lack of transparency about the definition of sexual violence used in the studies and potential associated interpretation bias. In this study, sexual violence was defined according to the WHO definition (cf. supra) . As is rThe questionnaire consisted of 13 modules and was designed to maximize sexual violence  disclosure by starting with less sensitive topics, building up toward the sexual violence modules. Both lifetime SV experiences and SV experienced in the past 12 months were assessed. The behaviorally specific questions were derived from the revised Sexual Experience Survey (SES-R) ,35, the To explore the impact and help-seeking behavior upon sexual victimization, potential associated factors were measured. To measure mental health outcomes, the following validated scales were used: the Patient Health Questionnaire (PHQ)-9 for depression  formal disclosure and help-seeking from professional services or the police as it related to the sexual violence incident that they identified as having had the most impact on their lives. If they experienced a single incident, this was automatically identified as the incident of reference.n = 62). Survey participants who indicated to be (in)directly exposed to sexual violence were asked at the end of the survey whether they would agree to be invited to participate in an in-depth interview regarding their experiences with sexual violence. Consenting participants were informed about the nature, the duration, and procedure of the study, and informed consent was obtained. Participants were assured that they could stop the interview at any time, that the study would not hold risks or costs for them, and that they would be insured during the interview. Furthermore, they were informed about the steps taken to protect the confidentiality of all the information they would provide. Participants were not offered compensation for their participation, but received a small gift  after having completed the interview.Participants were recruited via the survey conducted during the first quantitative data collection phase (n = 11). The first nine interviews were carried out by a female researcher with a background in clinical psychology and sexology and with the help of a male Arabic-speaking interpreter. These interviews took place between January 2020 and 12 March 2020. Two additional interviews were conducted in January 2021 by an Arabic-speaking male clinical psychologist. At that time, the ruling social distancing measures related to the COVID-19 pandemic did not allow for face-to-face interviews to take place. Therefore, these two interviews took place by telephone. However, another real face-to-face interview took place in the same period, but under different circumstances. In these particular circumstances, the social distancing measures at that time did allow a face-to-face interview. This interview was conducted by a female interviewer with a background in medical anthropology and public health with extensive experience in conducting interviews on sexual violence in this population. During the analysis, we verified whether the face-to-face and phone interviews were of the same quality. During a blind check, we could not distinguish the face-to-face interviews from the interviews conducted over the phone. We thus found that they were of the same quality.Data were collected through face-to-face semi-structured in-depth interviews (The semi-structured in-depth interviews were guided by a topic list containing seven themes: (1) framing sexual violence, (2) (in)direct exposure to sexual violence, (3) perceived reasons for victimization and perpetration, (4) consequences of sexual victimization, (5) coping and help-seeking behavior, (6) impact on family and peers/transgenerational transmission, and (7) recommendations for prevention and care upon sexual victimization. To guarantee anonymity, sociodemographic information was collected before the start of the interview and the audio recording. To start the interviews in a standardized manner, each interview started with a question to define what sexuality means for the interviewee, followed by the same question regarding “sexual violence” .Interviews lasted between 53 min and 1 h 51 min. The interviews were conducted in Arabic, English, and French. Citations reported in this paper were translated into English.In the first and quantitative phase of this mixed-methods study, the sample of AIPs was drawn from the databases of the collective and individual reception structures responsible for organizing the reception facilities for AIPS residing anywhere in Belgium. The head offices of the reception structures  drew a random sample, based on the criteria provided by the research team, such as legal status, age, gender, and nationality. The survey was available in seven languages . Because data regarding language was not included in the databases, nationality was used as a proxy to sample respondents who were likely to speak at least one of these languages. As a result, 142 nationalities were included based on a list of countries where at least one of the languages was spoken. The description of the sampling procedure and recruitment strategy and the lessons learned from developing and applying this research design have been published elsewhere (see ).p > 0.1).As a result of the COVID-19 pandemic and the enforced lockdown measures to prevent its spread, we were forced to stop the data collection on the 12 March 2020. By this date, 62 structured interviews with AIPs were concluded. As such, quantitative data was collected in 62 AIPs, whose average residence time in Belgium was 10.8 months. Three out of four participants were assigned the male sex at birth. The sociodemographic information regarding our study population can be found in In the qualitative phase of the study, a total of 12 AIPs participated in the in-depth interviews. However, one interview was interrupted and had to be postponed. In the end, the participant dropped out during the second part of the interview. Hence, 11 interviews were included in the analysis. The sample consisted of four heterosexual women and seven heterosexual men between the age of 23 and 53 years old who were (in)directly exposed to sexual violence. They all resided in asylum reception centers located in Flanders, the Northern part of Belgium.Statistical analysis was performed by using SPSS Statistics 26. Descriptive statistics were used to illustrate the sociodemographic characteristics, sexual victimization, mental health status, and help-seeking behavior upon sexual victimization of the study sample. Sexual violence variables were grouped into hands-off (eight items) and hands-on (nine items) sexual violence, the latter being further grouped into sexual abuse (four items) and attempted or completed rape (five items). We created dichotomous variables out of all items to assess lifetime SV victimization and victimization in the last 12 months. A detailed overview of the sexual violence outcome measures can be found in the The variables measuring barriers to contact professionals were grouped into reasons linked to the victim (five items), other persons (three items), accessibility (two items), and other reasons (one item). The variables measuring barriers to contact the police were grouped into reasons related to the victim (four items), the assailant (one item), accessibility (one item), the police (five items), and other reasons (one item). We created dichotomous variables out of all items to assess help-seeking behavior upon sexual victimization.p-values are presented. To compare the means of the continuous variables, the independent samples t-test was used. All assumptions were checked. Levene’s test was used to check for homogeneity of variance, which led to the use of the Welch t-test statistic, as equal variances could not be assumed.We conducted a bivariate analysis to compare the proportion of sexual victimization within the sociodemographic categories, the different categories of depression, anxiety, resilience, PTSD, alcohol and drug use, suicide attempts and self-harm, as well as to compare sexual victimization rates in the male and female subgroups using a Chi-square test or a Fisher exact test if the assumptions of the Chi-square test were not met. The n = 11) were transcribed ad verbatim. The accuracy of the transcriptions was verified by a researcher other than the one who made the transcription by comparing them to the audio recordings before the start of the first coding round. Initial ideas for analysis were noted down. The verified text files were processed and analyzed by using the software NVivo 12.The semi-structured in-depth interviews . Most AIPs have experienced sexual victimization in their life (83.9%) as well as in the past 12 months (61.3%). Most participants who reported sexual victimization in the past 12 months, and most likely had at least one victimization experience in Belgium, because the average time our study participants were in Belgium was 10.8 months. When measuring sexual violence, it is important to define the measured concept. In the quantitative survey, we used behaviorally specific questions to objectively measure sexual violence exposure. The behaviorally specific questions are mostly based on research from the U.S. and Europe. As such, interviewees were asked in the qualitative study to explain to us what they considered to be sexual violence. It appears that AIPs from different cultures, religions, and nationalities define sexual violence in comparable ways. Four returning defining elements were identified.Without consent.Overall, sexual violence was defined as sexual behavior that occurred without the consent of at least one of the persons involved. As Cristiano (25 years old) said: “It is actually having a sexual contact with someone against his will or against her will.” The interviewed AIPs identified that it could occur in any type of relationship, including marriages, and against both men and women. Rahi (42 years old) for example explained that “although he is her husband”, when a man does not respect his wife and just “takes what he needs” without considering her, this also accounts as sexual violence. According to the participants, it is not the context in which the sexual behavior takes place, but rather the experience of the persons engaged in it, that provides the core elements to determine whether or not it concerns sexual violence.“Like animals”.Several AIPs made the comparison to the lust-driven manner in which animals have sex. Elen (48 years old) pointed out that “you can actually compare it to animals that actually interact with each other; without any…without any emotion. You can compare it with yes, animals, animal attitude in principle.… People who are solely looking for action and then be done. As I said before, who treat each other like animals.” The description “like animals” was literally used by several AIPs in different languages to explain sexual violence. They further described it as a way of having sex just for the act of sex itself, not out of love or with respect for one another.Without equality & voluntariness.Respect and equal power relations between sexual partners was often mentioned as a necessary condition for a healthy sexual experience. Interviewees defined sexual violence as (1) sexual behavior without respect for one another, as (2) sexual relations in which there are “unequal” power positions, and as (3) sexual behavior that takes place by means of coercion.“Sexual violence to me is, any sexual act aims, like one side wants it but the other side refuses it and it happens whether due to pressure on them, or by hitting them, so the other side is not, like one side is accepting and the other is not.”Multiple forms.AIPs agreed that sexual violence could be both reflected by hands-off  and hands-on behavior . They consider it to encompass more than being penetrated against one’s will. According to them, sexual violence also includes unwanted sexual comments, showing unwanted sexual content, and unwanted sexual touching, and this can be online and/or in real life.AIPs reported sexual victimization in the country of origin, during transit, and after arrival in Europe and Belgium. Some participants testified in the in-depth interviews about direct and indirect exposure to sexual violence during their childhood. In those cases, it mainly concerned domestic sexual violence or child abuse perpetrated by or toward someone of their community. One interviewee was sexually victimized in relation to conflict in the country of origin. Sexual victimization during migration concerned incidents mostly in refugee camps within the migrant group and sexual exploitation by human traffickers or by locals who “offered to help them.” Once in Europe and/or Belgium, AIPs seemed to be mostly, but not exclusively, victimized by locals. Cristiano (25 years old) for example, experienced sexual victimization in Brussels by locals and in Italy by an AIP with whom he shared a room in the reception center where he was staying. He explained: “Actually, I have often experienced it personally. I don’t actually talk about it a lot, but I did experience several things personally in the Maximilian Park, so in Brussels…. I actually experienced that in Italy, when someone wanted to assault me with violence or have a sexual relationship…. They know…they sense that, for some reason, they know that we are actually refugees here…. The majority of people who are staying in the park have the same problem. Also experienced such things.” From Cristiano, but also from other interviewees, we learned that most of them had experienced at least one incident in Belgium. Sexual violence against AIPs appeared almost like such a common practice that they tend to normalize its occurrence. Youssef (31 years old) described that after being victimized while he was living in Brussels under a bridge at Gare du Nord, he started to consider the threat of sexual violence as part of his life while being an AIP: “Because that’s everyday there, we’re used to that. So, I discussed it with my friends, what had happened to me. And those friends also said, ‘Yes that is [common] here, you know that is very normal here.’”Grooming AIPs by locals with the promise of, among other things, offering shelter or a shower/bath seemed to be a common practice in the Brussels area where AIPs need to register upon arrival in Belgium. Interviewees explained how, as AIPs, they are vulnerable to sexual victimization  based on their own experiences and those of other AIPs they know. Throughout the interviews, AIPs described how they or people they know  were exploited because of their difficult socioeconomic situation. Many respondents highlighted that those refugees who are homeless or undocumented are very vulnerable to different types of violence.“…but you know, we are actually very, we are fragile there, we are very vulnerable in those places…. I think the homeless, they suffer even more than refugees. Refugees have some kind of shelter anyway. They can go somewhere for, like shelter or they get food or…. But homeless people, I think homeless people go through much, um, much more than we do, as refugees…. Indeed, as long as you don’t have valid papers or provisional papers or…. then danger lurks around every corner.”“They know our weaknesses, they think we are in a weak position, and they actually want to take advantage of that…. Yes, they know of course that we live on the streets. That we have to spend the night somewhere. They sometimes offer alternatives, or even money, also money to go with them. But yes, that is actually a bit painful, because that is not what we are here for either. I have other concerns on my mind. I am a refugee.”Aside from their legal status, being homeless was another factor that AIPs considered to make them increasingly vulnerable to sexual violence. On the other hand, some AIPs also indicated that staying in a reception center put them at higher risk. First, this is because it gives outsiders the chance to identify the AIPs as AIPs. Elen (48 years old) for example, described how one day a neighbor of the center she was staying in offered her a ride back from the store to the reception center. While she was in the car, the man propositioned her to have sex in exchange for a couple of euros. When she refused, he became violent. She added: “most think ‘uh those people are here in the center just for the sake of money’ or… they think ‘those people, uh, they are not looking for safety. Uh, they’re just here to make money and profit and so they’re willing to do anything’. So that’s a very wrong impression.”Secondly, reception centers were considered places of high risk for victimization because sometimes it’s impossible to protect oneself in a reception center. AIPs residing in “open centers” described feeling unsafe because anyone can enter without them being identifiable as visitors. Maryam (53 years old) initially felt safe when living in a reception center, but soon this changed: “Normally, because only families stay here, it is normally safe, in parentheses. So, we don’t always lock the door, we don’t lock the door. But that was then five o’clock in the morning. And someone then sneaked in and lay down on the girl and started doing all kinds of actions.”Majohoul (33 years old) said that as an AIP in a reception facility, one should always be on guard. He added: “Yes, it is actually pure coincidence, because, if you live in refugee camps or centers, that is, you are just, yes, you are just a prey basically. Anything can happen to you there, anyone can experience those situations.”Sexual victimization has an impact on the lives of AIP victims of sexual violence, though the experienced impact of their exposure to sexual violence differs from one victim to the other. Overall, sexual victimization impacts the AIP victims’ physical, psychological, sexual, reproductive, and socioeconomic realities. Fatoumata (23 years old) shared the following: “I’m not going to lie. I have trouble sleeping. I don’t feel well at all. I’ve passed some [things] that won’t leave me…. I see it and when I talk about it, it reminds me of all the details”. Psychological and sleeping problems were regularly mentioned in the in-depth interviews, as were difficulties in trusting others which impaired social relationships with their family, their peers but also with professionals in reception centers. Questioning one’s life and experiences, feelings of frustration, hatred, and revenge were common among AIPs victims. Also, questions on their own gender identity, gender roles, and sexual orientation were present. Maryam (53 years old) said “I didn’t consider myself as a woman” when she explained how sexual violence had impacted her. Youssef (31 years old) also reported questioning how others perceive his sexual and gender identity: “Yes, I have asked myself the question, ‘Is it maybe because, those people [men who are attracted to men] are attracted to me or because they find me beautiful or something?’ I’ve asked that question, too.”Reported long-term consequences are worrying and ruminating post-sexual victimization. Seeking answers to the question “why did this happen to me” and mentally exploring ways to avoid further violence and ways to cope with the consequences often appear central to the worrying and rumination. The following quote from Ali (26 years old), a victim of conflict-related sexual violence, is illustrative here:“Why he [assailant] broke me, why I am here? Why in Turkey what happened to me, in Greece what happened to me?… Why I lost my money on my way, why the smugglers take my money and they put me in the boat. I stay one day in the water, I become in one island for one year and nine months, in like prison. I sleep in the tent. Why all this happening to me?… Why I become refugee?… But what I should be: next to the people they need me. It’s something like happy idea and I am here, and I left. I left my life, my stories, my everything, my mom, my father.”In terms of impact, the consequences and the stigma around sexual victimization could lead to total social rejection by one’s community or family. Interviewees also explained how both victims and assailants may be killed in some cultures to cope with sexual victimization. Most AIP victims talked about stigma and shame related to the sexual victimization. In some cases, exposure to sexual victimization has forced them to become a refugee or to hide certain parts of their identity.Efforts to conceal the violence and to avoid the stigma associated with it, had far-reaching and long-term consequences for AIP victims, not only psychologically, but also socioeconomically and in terms of experiencing difficulties building social relations, barriers for healthy sexual relationships, exposure to forced pregnancies and marriage, and difficulties in taking up parental roles.For example, one interviewee explained how she fell pregnant from an older community member who had raped her when she was 15 years old. To avoid bringing shame to the family, her parents forced her to marry her rapist and keep the child. Therefore, this led to a disruption of the relationship with her parents and the development of serious trust and attachment issues. These issues and the lack of a trusted maternal role model ultimately compromised the mother–daughter relationships she developed with her own daughters and her capacity to function as mother/caregiver to the daughter who she regarded as an outcome of her rape. Fatoumata (23 years old) explained: “At the beginning, when it happened, I saw everything. It was horrible. I could not take care of my children, because my daughters, I had by his rapes.” Furthermore, she expressed her difficulties with her self-image as a woman, a mother, and her struggles with depressive symptoms and feelings of powerlessness/helplessness.Most of the interviewees indicated worrying about avoiding sexual victimization and other forms of violence, in addition to their worries about their migratory process. Youssef (31 years old) expressed his frustration about the circle of violence he experienced associated with migration. He felt that fleeing from violence only made him (and others) more vulnerable to further violence. He expressed the following:“…We actually fled our country because of violence, war, unsafety, a lot of negative things and we are here in Europe to, to find a safe haven actually. Peace! We don’t want violence, we don’t want to be raped, we don’t want to be assaulted. So those are things that we don’t want at all. So, our goal is just to have a normal and safe life in Europe.”To cope with sexual victimization, AIPs reported having strategies in place to protect themselves from all kinds of violence. By hiding parts of their identity and behaving differently in public, they try to avoid attracting unwanted attention. Elen (48 years old) gave an example of how she concealed her identity to protect herself. She said: “I actually have two, yes two personalities actually basically, so then….to the outside world I behave differently than when I am alone in my room or something, then I am my own.” Furthermore, some AIP victims described hypervigilance because of their victimization experiences. They try to be in control by means of making contingency plans. This includes Ali (26 years old), for example:“I am not stupid also, I’m trying to be smart, I’m thinking, I have a plan, always when I see the door for example. I do plan, and I see close the border, the border is closed, I try to pass the way, to find the border or find the place I can move, or I can do my plans.”In what follows, we will present the identified barriers and the decision-making process underlying help seeking strategies of AIP victims of sexual violence organized in line with the Deciding Where to Turn model . This thThe help-seeking decision points identified in this model are influenced by prior experiences with sexual victimization and help-seeking. The decision-making process can result either in coping with the victimization on one’s own, covertly seeking help, or overtly seeking help from either formal or informal sources of help. As long as victims do not feel “ok” they may move back and forth between the key decision points and the coping strategies .Do I need help?All participants in the qualitative study were invited for participation and selected because they indicated they had been exposed to unwanted sexual experiences in the quantitative study. As such, they could all identify the unwanted nature of the incident(s) they were exposed to, although they did not necessarily all label their experiences as sexual violence. Regardless of the label they gave to their experiences, they recognized the impact it had on their lives and that the exposure to (in)direct sexual violence had affected them psychologically, physically, sexually, reproductively, and/or socioeconomically see . Fatouma“In Africa, I didn’t talk about it, but here [in Belgium] when I arrived, well like I needed someone who could hear me actually, who could understand what…when we are girl, I get angry from around me and they don’t even know what is going on now.”What can I do?The second key decision point relates to knowing the potential resources that are available and the general attitudes of victims toward seeking help upon victimization. We did not probe in an in-depth manner about the interviewee’s knowledge of resources in this study. However, interviewees did report on their attitudes toward seeking help and their estimation about the accessibility of formal help resources. Most of the interviewed AIP victims recognized that they could benefit from receiving help, but that they would not have access to it because of their legal status, because of a lack of available resources and/or because of negative social consequences associated with seeking help. In addition, waiting lists were mentioned as an important barrier as well. In that regard, Ayman (36 years old) explained how waiting lists in his home country hindered seeking help from a mental health professional: “So, we have for example in the city like Aleppo. I think, there are doctors, so psychologists are there. But you can count them on one, one hand actually. About five, six for a large, for I don’t know how many millions probably of inhabitants. So, before you can get a turn at a psychologist, it takes a very long time.”The identified barriers influenced their decisions to disclose their experiences with sexual victimization and seek (in)formal help.What will I do?According to the model of Deloveh and Cattaneo , victimsThe most important barriers for seeking help reported by the AIP victims who participated in the in-depth interviews can be grouped under the themes of shame and taboo. The in-depth interviews revealed that in many families and communities, sexual victimization is kept a secret to avoid stigmatization of the victim and their families. Maryam (53 years old), for example, explicitly said: “Which means that there are families that would rather keep it a secret. So that almost never comes out, um. That is a shame.” The stigma and the consequences associated with sexual victimization, result in the subject being made taboo, which hinders direct and indirect victims from disclosing the violence and seeking both (in)formal help. Fatoumata (23 years old) for example tried to hide what had happened because she was not close with her parents and did not know how they would react. She narrated: “Then after this happened, immediately I took off the sheets as I didn’t talk too much with my mother nor with…. I wasn’t able to confide in them because we weren’t close at all, I changed the sheets to hide, I was quick, I took a shower.”Most AIP victims worried about what others would think about them when learning about their experiences or when they would seek certain types of care . Ali (26 years old) explained that he remained silent because he feared that others would perceive him as less of a man: “He’s [referring to himself] not normal, he’s not man, or not…. I don’t know.”Elen (48 years old) described how seeking help from a mental health professional was not easy. First of all, because seeking help from a psychologists may (negatively) change the way others perceive a person and secondly, because when AIPs seek help, their underlying motivations are often interpreted through the lenses of the prejudice that AIPs will do anything to get papers. She said:“I have a lot to say but I can hardly say anything, even to the social workers or to other people, because they always look at you differently. For example, I have a sick daughter now…she really needs a psychologist because she’s just depressed. She’s been through a lot…, but still some people keep saying ‘yeah maybe she’s just doing that because she wants to get papers this way or something’, so that makes you even more…. There are communities that have a bad, a bad impression from the moment a psychologist comes along.”Many victims also confessed to have remained silent out of fear of not being believed or taken seriously. A lack of trust in others added to the decision of several interviewees to keep the information to themselves. Both Fatoumata and Majohoul testified to how a lack of trust and the fear of negative consequences  hindered them in seeking help and disclosing the experienced sexual violence.“I didn’t feel well. I was sick. I didn’t feel well at all, but nobody noticed, but I knew what had happened and then I told my mother. I told her, when she wasn’t there, when Mr. came here there was nobody there and Mr. raped me. My mother she told me ‘Mr. can’t do that,’ how he can’t do that. I told her, ‘Mr. did it to me’ because…she told me ‘No, Mr. didn’t do it’ and I showed her the sheets.”“So, I never sought help because I was afraid that I…I didn’t trust people anymore. So, I was afraid that if I tell people something, they will always want something from me. So, when I went to the people I was telling my story to, I, I, that’s why I had closed myself off a bit and chosen not to tell anything. So that’s why I was, that’s what I was afraid of.”For some of the interviewees, it felt safer to talk about their sexual violence experiences with people with whom they shared a cultural background or language. Cristiano (25 years old) linked this to the shared cultural background and language. He said: “Of course, I talk about it with Sudanese people who understand me. Because it’s hard to tell external people because they don’t understand your language anyway. So, it’s always the same people who listen to you.”On the other hand, sharing a certain cultural background was by some also considered as a reason not to discuss their experiences with certain persons. Ali (26 years old) explained it as follows:“For example, last month I had a visitor, a friend. He’s from Switzerland…. I really, I cried with him, I speak with him a lot. Like, I don’t know, I speak from my heart. I need it. Maybe it was the help I asked…. If I tell this story to… I feel, I don’t know…. Iraqi, Syrian, Palestinian, Moroccan, Irani, Afghan, I speak all their language, so I know their culture also. I will never talk about it with them, or I would never like they know about this.”Others also indicated that they only disclosed their experiences to our research team or to people they had met in formal or informal contexts in the host country. In the latter case, two reasons were articulated: (1) AIPs expected European citizens to have a different and more “open” viewpoint on sexual victimization than the members of the communities they belonged to, and (2) the interview took place in an objective research context, and they deemed it important to share their victimization experiences to protect potential future victims. Majohoul (33 years old), for example, indicated that he felt the need to discuss his experiences, but that he only felt safe to do so for the first time with the interviewer who conducted the first face-to-face structured interview, which was part of the quantitative study (cf. supra), and that the professional attitude with which the interviewer treated his story, motivated him for further disclosure. Related to this, he said: “No, that was the first time, and when I, I actually gave the first interview, at the end there was this question asked of, ‘Are you willing to talk about that?’, I immediately answered yes, because I really wanted to talk about that”.Even when one feels generally supported by friends and family, disclosing what happened is sometimes too big of a step to take. For some, like Youssef (31 years old) who said “yes, I tried, of course, to ask friends or acquaintances from Gaza [for help]…. But everyone is busy with their own…. Everyone has their own story so, I was stuck”, it felt as if they would burden others too much. For others, disclosure was also considered as a potential trigger of negative feelings. Ali (26 years old) described how this was for him:“What I did after, only I, my friend when he sees me like this he say ‘I can do whatever you want, I stay with you’. Of course, we went to this guy [Ali’s friend], to his home, he was, I had his name, and I know him very well, we went to his home, because I feel ashamed to tell my family, to tell my brothers, and also I feel ashamed to tell this friend who is with me. Just I told him… I make fire his [the assailant] car, his home….”When it comes to barriers for reporting to the police, the reasons are very diverse and very often influenced by previous encounters with the police, not only in host countries such as Belgium, but also in the home country and en route.Some victims did not seek help from the police because of the image they have about the police. Rahi (42 years old) explained that she does not feel like the police can protect her, or want to protect her, because of her legal status. After a violent attack in Athens, upon reporting, the police had sent her away because she was an AIP: “It was terrible because eh, there the police cannot protect you, because if you go to police, he say ‘you don’t have any right here’.”Not reporting could also be linked to the migration process. In the case of Majohoul (33 years old), as he was still on the run and didn’t feel safe yet, he wanted to remain under the radar. He judged that going to the police would bring him into more trouble than it would help him. He explained his motivations to not seek help from the police:“My intention was actually to also remain anonymous and as soon as possible [to leave] Egypt, because my intention was not to stay in Egypt, so the more that you assert yourself, the sooner they [the persons for whom he was fleeing] will get you. So, I, my intention was to flee Egypt too…. Even if I had to go to the police, and okay, I’ll report it. And after that? Hey, that probably wouldn’t work out anyway… so, if they [the persons for whom he was fleeing] had to know about what was going on, they could also do something to me. So, I was actually, I was in a cocoon, I was stuck.”In other cases, not reporting to the police was linked to the victim and the sexual victimization incident itself. Frequently, interviewees mentioned that they did not think the sexual violence was severe enough to seek help or they believed that nothing could be done about it, as with Cristiano (25 years old), who explicitly said: “No, there is actually no one who can help me”. Finally, another returning reason relates to the frequent exposure of AIPs to sexual violence see .Seeking help without disclosure.Because the reported sexual victimization disclosure rates are rather low in the quantitative study population see , our exp“And our solution is time, too much time. With God you can be better, but it will be very quiet, very quiet, secret, something like this. They have to…. Maybe I have psychological problems, but I go to my doctor, and I cannot talk to him. I say to him ‘I cannot sleep’, for example, ‘ah, okay, maybe you can try stress tea’. Maybe, because, something, some people, they don’t understand.” He went on to say: “I just call my friend and I told him something like ‘behead me, they take me’, but I didn’t say to him what happened….”Attempts to protect themselves from further violence often occurred while remaining silent. Elen (48 years old), for example, noticed that women who wear a headscarf were less harassed in the center she was residing in. She said “at a certain point I also decided, look, I’m going to wear a headscarf from now on, so they’ll leave me alone. So that’s also a form of self-protection”. In this way she inscribed herself into a social group that in her eyes was less at risk of victimization. This way of protecting oneself is in contrast with experiences from other AIP women. Rahi (42 years old), for example, described that when she was harassed on the bus in Belgium, she immediately associated this with her being a target because she was wearing a headscarf. As a Muslim, she had experienced Islamophobic prejudice events in the past. Adopting self-protection strategies thus appears to have variable outcomes, depending on the context and prior victimization experiences.AIP victims also described the selectivity of their disclosures and how the results of their attempts to seek help led to adjusting their coping strategies. Upon positive experiences, victims tended to share their experiences with more people and/or to give more details of what had happened to them. Negative responses to their disclosures often made them take a step back and return to silence and secrecy. Some AIPs also described mixed feelings about the consequences of seeking (in)formal help as they alternate between positive and negative attributions over time. Fatoumata (23 years old) described how, although therapy had helped her already a great deal, the consequences of talking about her experiences also brought her down at times. At a certain point, she decided that stopping to talk about her experiences would help her to focus more on the future instead of the past. She explained:“So, when I started to talk, I started to feel good but then I said to myself why aren’t you here [in the present], it’s done anyway, it’s not going to change so you better, well with that, it is over…. I don’t want to look back [in therapy] when I don’t want to think about it anymore. Sometimes I even made progress with my daughters. I don’t want to look back every time…. I don’t want to talk about it. I want to look at my future, what is a possible here, what can I do here, what, me and my daughters how are we going to get out of this. Well, I need to put all this in my head, forget and all that and if it is to talk more and more, no I can’t manage. It’s too much, even in the office I got a little, I got a little lost. I’m tired, but she [the therapist] understood that I’m tired in fact. I could not, no.”During the in-depth interviews, interviewees were asked about what they would recommend to policy makers and care givers to improve prevention strategies and care paths designed to offer help to victims of sexual violence. According to AIPs, the key to both prevention and care is to break the taboo around sexual violence. Almost all respondents suggested that starting early with an age-appropriate sexual education is crucial. Many indicated that they never received comprehensive sexual and relational education and, as such, experienced difficulties in negotiating safe sexual contacts, discussing both healthy experiences of sexuality and sexual violence, among other things. According to the interviewees, proper sexual education should be part of every individual’s upbringing.Furthermore, AIP victims also suggested that sensing that they would be taken seriously by the police and that they could benefit from police protection could potentially lower the barriers for reporting.Lastly, they stressed that stigmatization of the victims should end. Safe disclosure should be the norm, not social rejection.Based on the explorative findings of both the quantitative and qualitative study, we can derive that AIPs residing in Belgium are at high risk to be sexually victimized. Approximately 84% of our sample in the quantitative study reported to have been exposed to some type of sexual victimization in their lifetime, and about 61% reported victimization in the past year. It is important to mention here that, on average, the participating AIPs were residing in Belgium for at least 10.8 months. This means that most participants who reported sexual victimization in the past year might have been victimized in Belgium. However, confirming findings from earlier studies ,10,13, AIn line with previous studies in Belgium ,12,43, wIn contrast to earlier studies by Keygnaert et al. ,12, the Sexual victimization has an important impact on the lives of AIPs. Victims report mainly psychological and socioeconomic consequences. However, mental health did not seem to be impacted by sexual victimization in our quantitative sample. This could be related to the lower power due to the small sample size, but it could also be the result of the general poor mental health statuses observed in this population ,50. ManyFurthermore, sexual victimization has also been identified as a reason to leave the country of origin. As a result, victims may lose their support network and as such be more at risk for further violence as both social protection and social support as coping mechanisms are lacking ,20.In addition, because AIPs have a lot of worries related to the migratory process impacting their mental health, they are not always immediately able to protect themselves or to identify when someone is taking advantage of them. Adding to existing worries, having to cope with being at risk of sexual victimization can contribute to the mental strain they experience. As such, the vulnerabilities may circularly feed into one another.This study also shows that disclosure and help-seeking behavior upon sexual victimization seem to follow the decision-making process theoretically described in the “Deciding Where to Turn” model developed by DeLoveh and Cattaneo . AlthougThis explorative mixed-method study is strengthened with the applied triangulation of data. First, AIP participants in the qualitative study cross-culturally defined sexual violence in line with the central sexual violence definition in our study and correspondents with the behaviorally specific questions that were used in the quantitative survey. This match validates the use of this type of questioning in AIP populations. Future population studies on sexual violence could thus apply the same type of questions in the general population and in AIP populations, increasing the possibilities for comparison between the populations. Secondly, the highly reported occurrence of sexual victimization in the quantitative study was complemented by contextualization through the qualitative data. Our respondents testified being exposed to sexual victimization often, either directly or indirectly in their home countries, when on the move, or upon arrival in Europe, and in this case Belgium specifically. Thirdly, combining the two datasets allowed us to assess how often victims seek help upon victimization and the barriers for seeking help, while understanding how these numbers can be understood in a more in-depth manner.Like any research, this study came with limitations. Although it was initially designed to overcome the identified challenges in prior prevalence and population research regarding sexual violence in AIPs in Europe ,28, COVIAIPs of all genders residing in Belgium seem very vulnerable to sexual victimization both before and during the different stages of their migratory process, including upon arrival in Europe and Belgium. Their exposure to sexual victimization rises to almost 84%, and in about 61% of the AIPs, this happened in the last 12 months when they were most likely already in Europe and Belgium in particular.Although sexual violence impacts AIPs’ lives and health significantly, disclosure and overt help-seeking upon sexual victimization from informal networks, professionals, and/or police were rare. Identified barriers to seeking help are mainly linked to stigma and shame, but also to previous negative help-seeking experiences. Not seeking help in the latter cases is primarily a strategy to avoid further victimization and negative consequences.When developing prevention strategies targeting sexual violence in AIPs and care paths aiming to offer adequate care to AIP victims of sexual violence, attention should go to breaking the taboo around sexual violence. Furthermore, investing in age-appropriate relational and sexual education to people of all ages and cultural backgrounds including sex-positive messages and focusing on developing skills to both setting and respecting boundaries, is urgently needed. Measures to lower barriers to seeking (in)formal help should be prioritized, including creating safe disclosure contexts and tackling the stigma victims of sexual violence are facing. Lastly, more research is needed to further scientifically substantiate the findings of this study and related recommendations.


YouTube is the second-most visited webpage in the world and boasts over 2 billionusers and 500 h of videos uploaded every hour. Despite this popularity,relatively few articles have discussed the practical use of searching andYouTube as a research tool and source of data. The purpose of our paper is topropose a step-by-step schematic for utilizing the YouTube platform. Ourdiscussions include (a) when/whether to use YouTube for research; (b) selectingan appropriate research design; (c) how to search for YouTube data; (d) whatdata can be pulled from YouTube; and (e) the contextual limitations forinterpreting YouTube data. Further, we provide practical strategies andconsiderations when searching, collecting, or interpreting YouTube data. Thesediscussions are informed by our own work using the YouTube platform. Effectivemethods used to search for YouTube data are likely to extend beyond simplysearching the platform itself; the search strategy and search results themselvesshould also be documented. While not exhaustive, we feel these considerationsand strategies present themselves as a conceptual foothold for future researchusing the YouTube platform. Finally, the entirely participatory and user-generated nature of the contentof social media provides a near-constant influx of new data from billions of users.For example, YouTube has seen a surge in recent usage, in part due to thecoronavirus disease 2019 (COVID-19) pandemic,18 as well as through use as aresource for COVID-19 health information.20Since their introduction, social media platforms, such as Twitter, Instagram, andFacebook, have been topics of interest to researchers as both researchtools and over 500 h of content uploaded every minute, and over 1 billion hours of videos watched per day. Previous research has leveraged this data for content and thematicanalyses,25development of instruments, large-scale interventions, and commentary on YouTube itself as a phenomenon.YouTube's advantage is the global reach and popularity it has achieved. YouTube isowned by Google and is the most popular video-hosting site in the world, boasting 2billion users . The SecondInternational Handbook for Internet Research reviews the ways that YouTube has been used for science and medicine but doesnot outline any specific strategies for practically using the platform for research.On the other hand, the SAGE Handbook of Social Media Research Methods does provide a detailed, general guide for conducting social media researchand data collection/analysis. However, some nuances and specifics for conductingthis research with YouTube are absent. Among a number of recently published papersutilizing YouTube for health research,3134 no two studies utilized thesame combination of methods for (a) searching for videos or creators, (b) selectingwhich videos or creators (and subsequent videos) were relevant to their researchquestion, or (c) determining the data or metrics to be taken from the selectedvideos. Even a recently published research methods case report on vaccine safety and YouTube denotes a wide range of search methods for YouTube but does not offer anypractical implication for how to address this. These inconsistencies highlight thepotential issues for replication of these works; common approaches for searching andcollating YouTube data are also key for the synthesis and reporting of results.YouTube's popularity as a platform has resulted in handbooks and book chaptersdetailing how the platform may be leveraged for research.In this paper, we provide a conceptual schematic by which future research utilizingYouTube data can build from. We also discuss challenges, considerations andrecommendations for both quantitative and qualitative researchers seeking toleverage the YouTube platform as both a data collection tool and an open source ofdata; these discussions are conjointly mapped onto the step-by-step table andschematic (see 37). As such, wewere interested in whether this surge of engagement with home workout videos wouldpersist, given that engagement with traditional informal exercise programmes  demonstrates a consistent sharp drop-off. Additionally, we conducted visual/textual analyses for the use of behaviourchange techniques and other elements among the 15 most popular fitness channels on YouTube. Juxtaposition of our research onto the proposed schematic is detailed inThese discussions are informed, in part, by our own work utilizing YouTube data.Briefly, our own work explored longitudinal trends in home workout videos on YouTubeduring the COVID-19 pandemic, as well as visual and textual analyses of the mostpopular home workout and fitness creators’ videos. YouTube reported global averagedaily views of videos with ‘workout at home’ in the title increased by over 200%since March 15, 2020 :leaving likes/dislikes on videos, posting/liking/disliking/replying to comments,and subscribing to channels.The creator has the highest degree of platform engagement. Creators typicallypost videos, write descriptions, and gather a following of viewers andsubscribers that help them reach micro-celebrity status. YouTube creators – like PewDiePie (38.03 million subscribers), who postvideogame content and streams – have appeared in the Business Insider, New YorkTimes, and Forbes magazine, can arguably shape public opinions, and entice social action. The rise inchildren aspiring to be a YouTuber or vlogger as a future career reflects theinfluence of creators.46 The predominantly video-focussed nature of YouTube has alsoengendered an entirely novel phenomenon. ‘Viral videos’ or videos that generate themajority of their social views within a few days of posting  inherently rely on video-hosting platforms for their existence, which can beexplored through statistical methods.49 Modern trends like ‘What Ido/eat in a day’, ‘A day in the life of…’, and ‘[Verb] with me’ are ripe forethnographic and critical discourse analyses. Categories of videos, like vlogging,are filmed as a one-sided conversation with the viewer and have been the topic ofethnographic research  and commentary. These messages and content, which directly appeal to a creator's viewers,encourage the development of parasocial relationships between the creator and theirviewers, which has been the interest of previous quantitative and qualitativestudies.51 Forresearchers, a useful question may be ‘Is YouTube likely to capture the trend(s),culture, and/or phenomenon I am interested in?’. For instance, researchersinterested in the formation of parasocial relationships between viewers and creatorsmay ask ‘How are the creators building and maintaining relationships with theirviewers?’.The unique nature of the YouTube platform poses a variety of research opportunitiesfor both quantitative and qualitative researchers. In its simplest form, a singleYouTube video or creator can provide a wealth of research content. Previous workexplored content from one sole creator to examine the ‘brand’ or ‘ethos’ of thatspecific channel and the appeal of this content to its viewer base. or removed by the creator. Hence, they can be utilized as a ‘window to thepast’ or as representatives of trends across social and cultural movements. Thesedata lend themselves well to longitudinal analysis, like modelling trends orvariation in engagement in response to an event; cohort studies with specificcreators or videos; or simply descriptive studies examining changes in popularity orengagement over time. Qualitative temporal analyses of video content , as well as broader communityand/or culture of a video/creator  are possible, and can provideinsight into phenomena such as ‘cancel culture’  and ‘viral trends’. Previous work has examined trends over periods of a few months, to 2 years, and 10 years. Related questions to guide the research process may include: ‘Am I interestedin changes in engagement of a single video/channel over time?’, ‘Am I interested inhow a topic or content evolves across time or in response to an event?’, or ‘Am Iinterested in comparing some aspect of a topic between timepoints?’.The perpetual existence of videos after they are posted allows for temporal analysisof YouTube data. Videos posted on YouTube remain on the platform indefinitely,unless otherwise flagged for violating community guidelines Studies that are less concerned with longitudinal changes or temporal trends shouldstill be mindful of when videos of interest were posted. Since engagement with avideo is not limited to the date a video was posted, users can continually engagewith content, long after a video has been released. As social and political climatesshift, older videos that contain a – now, unfavourable – message, may garner newnegative comments and dislikes, and by proxy receive more views. If an older videoacquires a windfall of a new engagement, or ‘goes viral’, new comments may reflectnew and different perspectives or cultures. Considerations for the temporal flux ofengagement with a video or channel of interest should be noted. Questions mayinclude: ‘Is my topic/channel of interest controversial, likely to be or go “viral”,or experience volatile levels of engagement?’ or ‘Is therelevance/importance/content of my topic sensitive to a specific period intime?’. In terms of gender, this reach is fairly even, with an estimated 82% of U.S.men and 80% of U.S. women using the platform. Consistent with other social media platforms, younger age groups tend to skewYouTube's user base. While this broader user demographic is likely notrepresentative of every video/channel/topic, actual viewer demographics are privyonly to the channel creator. Preliminary examination into the type of audience avideo/channel/topic is likely to garner is suggested to ensure alignment between theresearch question and the data to be collected. Questions such as: ‘Is my populationof interest likely to use YouTube to watch/search/engage with my topic?’ or ‘Is datacollected from these videos or creators likely to be representative of thepopulation I am interested in?’.Another important point to consider is the general demographic of YouTube users.Recent estimates suggest that 81% of U.S. adults used YouTube, reaching 95% of U.S.internet users between the ages of 18–29, 91% of users aged 30–49, 83% of users aged50–64, and 49% of users aged 65 years or older. which may discourage this content from being uploaded. An ongoing lawsuitagainst the platform alleges that BIPOC content was repeatedly removed from YouTubewithout an explanation. The ongoing complaints and lawsuits illustrate that the YouTube algorithm isnot an apolitical tool and can come laden with prejudice. Researchers should becognisant of the social and political dynamics that play out across the YouTubeplatform and formulate their research questions accordingly.Certain populations may be underrepresented by the YouTube platform, in part due tothe nature of the YouTube algorithm. Almost one third of queer and non-binarycontent on YouTube can be demonetized simply for using LGBTQ2 + associated words such as ‘gay’ and ‘lesbian’, This sheer amount of new content can make it difficult to establish a clearpicture of the scope of searched/collected data, making it difficult to determinewhat might constitute a representative sample. Previous studies have attempted toremedy this issue by selecting every x video to illustraterepresentativeness  or sorting by the most viewed videos. However, methods like these must be approached with caution, as the YouTubealgorithm and how ‘popularity’ or ‘relevance’ of a video is determined can bias orconfound searches.Searching for content on YouTube presents as its own unique challenge, especially forresearch purposes, where the replicability and notation of the research process isparamount. Over 500 h of content are uploaded to YouTube every minute.The YouTube algorithm, among other things, determines which videos appear when asearch is conducted on the platform. The algorithm ‘curates’ a series of videos todisplay based on numerous factors, including the ‘popularity’ of a video, a user'spreviously watched videos, the location of the user, and the specific day/time thesearch was performed. The algorithm is a ‘black box’, in that the specifics forwhich videos are displayed – and the order in which they are displayed in – areunknown to the searcher, rendering replications of searches near impossible.Searching for videos/channels on YouTube may require a more complex approach thansimply using the search bar. Below, we highlight the benefits and considerations tothree distinct approaches to searching for YouTube data. Whether these approachesare used individually or in concert are up to the discretion of the researcherand/or the nature of the research question.: quotations will search for the exact search string; the plus operator forces results to include the specific word; similarly, theminus operator  excludes results with the specific word; thepipe operator  returns results with either word; and thewildcard operator  will replace at least one word in a query. Hashtags can also be searched. Notably, while the number of results of asearch used to appear with the search results, they no longer do as of thewriting of this manuscript.Integrated into the YouTube webpage and app is the YouTube search bar into whichkeywords or phrases are typically entered. By default, search results are sortedby ‘relevance’, and include both videos and channels. Videos can be furthersorted by ‘Upload date’, ‘View count’, and ‘Rating’, and further filtered by‘Upload Date’ , ‘Type’, ‘Duration’ , and ‘Features’ which includes options like location, HD,and subtitles/CC. The use of some operators can also help narrow searches  More consistent across users are YouTube's trending lists, where the top50 videos for categories of ‘Now’, ‘Music’, ‘Games’, and ‘Movies’ across thesite are listed; however, these lists are subject to change daily, if nothourly.Beyond the search bar, YouTube also ranks and recommends videos based on browserhistory, cookies, previous videos watched by the viewer, user location, and newcontent, among others. However, how these videos are selected is difficult totrack and the appropriateness of these videos is debated.Researchers should take pre-emptive steps to promote consistency andreplicability of their searches. Searches using YouTube should be done withbrowser history and cookies cleared and on an incognito account or no account,so that these factors minimally influence search results. Location of thesearcher  may also be relevant to report. Whensearches concern the most popular or relevant videos, sorting by ‘relevance’appears to be the best choice, however these results should be interpretedcautiously and ideally in tandem with other search methods. Record of (a) whatsearch terms and operators were used, (b) when the search was conducted, and (c)which videos/channels were extracted and from where  specifically are crucial, as replication of the exactsearch results queried is very unlikely. or the quality/quantity of the content on the platform is debatable andshould be taken into account. Changes to the YouTube algorithm in 2019 havereduced viewership of what YouTube calls ‘borderline’ content  by 70%. For research examining the presence or prevalence of these typesof content , relying on the YouTube algorithm may present an inaccurate picture ofthese contents. This method of searching may still impart apseudo-representative sample of videos for a specific query (for the specificdate of search); as such, studies seeking to use a ‘representative sample’ ofvideos should use the videos in the order they are presented, rather than takingevery nth video, as the video order presented is more in linewith what viewers are likely to see as well.While this method of searching may give a general picture of the videos/channelsthat may show up in a given topic, how closely these results and recommendationsrepresent what is actually seen by users The capability of external websites and search engines to search for YouTube datashould be strongly considered by researchers looking to use YouTube data. Thesesources offer a more flexible and targeted way of searching and can oftenprovide data-backed choices for channel or video selection. The Google searchengine, for example, can be used as a direct alternative to the YouTube searchengine, simply by adding ‘site:youtube.com’ into the search query. Moreover,searches into Google with the object ‘YouTube’ will often return curated orcompiled lists of popular channels or videos for a particular topic. Similar tothe YouTube search engine, these searches should ideally be completed withcookies cleared, browser history erased, and from an incognito account. In this way, channels can be compared to each other. Further, eachchannel is associated with four top 50 video lists: latest, most viewed, highestrated, and most relevant. The ‘most relevant’ list specifically can helpresearchers to determine which of a creator's videos are most popular at thatmoment, instead of relying solely on views or likes, which may introduce bias.Other metrics like country and similar channels can help to localize, globalize,and/or compare channels for selection. More generally, Social Blade also curatesTop lists for specific topics ,YouTube channels, and specific countries . Ideally, thesesearch engines and webpages are used in concert, along with the YouTube searchengine.Aside from Google and other search engines, there are also webpages dedicated totracking and ranking the metrics of social media platforms, like YouTube. Onewebpage we have used and will recommend is ‘Socialblade.com’, a social mediaanalytics website. On Social Blade, every YouTube channel is assigned a rank anda grade based on a variety of metrics – including video views, subscribers –that signal the current popularity of a channel. which can return YouTube data that fit numerous specified parameters. These results arereturned in tabular form, with searches returned as code that can be used byother researchers within the API, akin to a search strategy in an academicdatabase. We note that the use of the API involves a learning curve for thoseuninitiated in computer programming, and that we do not claim to be experts inthis specific methodology. Use of the API may also best suit ‘big data’approaches to leveraging YouTube. Indeed, multiple methods of sampling from theYouTube API have been documented by previous research in this field.65 However,there are resources available for navigating the API online and on YouTube. Asimplified tool for extracting data from the API developed by Prof. Riedercalled the YouTube Data Tools  offers a more user-friendly alternative for calling the API. Another tool– the Mozdeh Big Data Text Analysis programme, developed by a group at theUniversity of Wolverhampton  – leverages the YouTube API to gather video comments which can then bemined for word associations and sentiment and filtered bykeywords/likes/gender/etc., among other functions.One shared characteristic among the previously described search methods is thatthe exact search results are likely irreplicable by other researchers. Owing tothe ever shifting and growing landscape of YouTube data, queried results usingthe same search strategy are likely to look very different. Further, the limitto how much data can be extracted is limited by human searching. However, analternative search method, the YouTube Data Application Processing Interface(API), can return hundreds of relatively consistent search results based on asearch query. Briefly, the YouTube Data API allows for integration of YouTubefunctionality into external webpages. Of relevance is the search function of theYouTube data API, has categorized data via interactions: audience interactions ,social interactions , and platform interactions . We build upon the work of Giglietto et al, proposing four broader types of data: engagement metrics, video/channelcharacteristics, textual data, and visual data. Below we describe these forms ofdata.The YouTube platform is rich in the types of data that can be extracted, bothquantitative and qualitative. Previous research by Giglietto et al, We define engagement metrics as data that quantifiably represent the interactionsthat viewers and users have with creators and the YouTube platform. Thesetypically include video views, video likes/dislikes, comments/replies tocomments, comment likes/dislikes, and subscriber count. This watch time threshold is considerably longer than other platforms.Further, views may be counted from outside the YouTube webpage. For example,embedded videos on other webpages count as views. Hence, views may be morerepresentative of engagement with the specific video, rather than theYouTube platform itself. Views can further be used as search criteria;whether to determine the most popular videos, to identify the most popular videos for a creator, or both.YouTube counts a ‘view’ when (a) an individual intentionally initiateswatching a video  and(b) watches at least 30 s of the video.Whereas a view is passive in that no further action from the viewer isnecessary beyond simply clicking on the video, likes represent the smallestform of active engagement with a video (or comment). Further, similar to theview, which is the smallest form of interaction with a video, likes/dislikesare the smallest forms of interaction with a video creator that a user canhave. However, owing to the need for an account to leave a like, the numberof likes a video has is typically far lower than the number of views a videohas. Moreover, the number of dislikes is also typically much lower than thenumber of likes a video receives.YouTube users can leave a like or dislike on a video which is also saved to auser's account under a ‘liked videos’ playlist YouTube depicts the ratio oflikes to dislikes on a video through (a) a number next to a thumbs up andthumbs down icon, respectively; (b) a dark grey/light grey bar, whereby thedark grey bar represents the percentage of likes and the light greyrepresents the percentage of dislikes; and (c) the exact number oflikes/dislikes if the mouse is hovered over the bar. Accordingly, some studies have solely examined comments as a sourceof data.7678 Functionally, YouTube users can leave comments on avideo, as well as reply to comments, and leave likes/dislikes on comments.The total number of comments is displayed underneath the video, as are thereplies to a comment. Comments can be sorted by either ‘Top comments’ or‘Newest first’. Creators of a video can also ‘pin’ either user comments ortheir own comments to show up first and can also ‘heart’ specific commentsas a way of promotion, which are demarked from other comments with a smallbadge with a heart underneath the comment. Creators can further deletecomments or hold comments with certain words for review or even turn offcomments completely.According to YouTube, comments allow creators to ‘get direct feedback fromyour viewers, answer their questions, and overall create a community andconversation around [their] videos’.Separate from the interactions that viewers, users, and creators engage in withvideos and each other, there is also data that can be drawn as a function of thevideo or channel itself. For creators/channels, the total number of videouploads, video length, channel start date, and video posting frequency can offeran estimate of a creator's activity on the platform. Similarly, the videopost-date and length of video can be used as comparators between videos.can be extracted with screen capture software orconverted to other file formats for download. Within the video, additionalvisual elements such as banners  can be extracted for analysis. Videos can contain several elementsfor analysis including human elements such as people who appear in the video,environmental elements such as the set-pieces of the video, and camera angles –the way a video is shot. In this way, the creator themselvescan be the subject of the visual content or data . Video thumbnails, when used in research, can also be of interest as theyprovide a snapshot into the content of the video at a glance. As well, a seriesof such snapshots can be seen in the form of ‘recommended videos’, which is areel appearing to the right of the observed video as to suggest videos of asimilar nature.Within the YouTube platform, several elements of video content can be extractedfor analysis. First, the videos themselves can be analysed. This can be done byanalysing the video as a whole or by extracting screenshots. Notably, completeYouTube videos From the perspective of language and discourse, YouTube videos can betranscribed, coded, and analysed according to the research question. As of thewriting of this paper, YouTube has an ‘open transcript’ function that displays atranscript that can be extracted, with or without timestamps, which greatlyfacilitates the process of extracting video textual data. In addition, thetextual content can also be added to accompany videos. Creators can do this inseveral ways, including video descriptions, video titles, about pages of thechannel, and video tags. Additional textual data links subscribers and viewersto the creators’ other platforms, such as Patreon and Instagram, and to promotesadditional materials. These self-promotional messages encourage a creator'sviewers and users to engage with the creator both inside and outside of theYouTube platform, which may manifest as features in future videos. YouTubecomments are also a lucrative source of textual data as they reflect theopinions of the community within a channel. As such, comments can be used anindicator of the discourse around a topic, the culture of a community, or astextual reference for the likes/dislikes of a video. Alternatively, if the videoand its content closer reflect the creator, then comments closer resemble theperspectives, opinions, and feelings of the community. Overall, much of thistextual data provides an opportunity for YouTubers to engage further with theirsubscriber and viewer base outside of the video, and to garner more visibilitythrough their other platforms.6971 By the very nature of theYouTube platform, videos with an earlier post-date have more time, and thus morepotential, to accrue views. Given that only current view counts are available for avideo (unless you are the video owner), it can be difficult to track trends inviewership. Further, views on a video may not be representative of the popularity ofa creator, as compared to the total views a creator has accrued. The phenomenon of aviral video exemplifies this well, whereby the popularity of a single video drivesengagement with the creator, rather than the popularity of the creator drivingconsistent engagement with all their content.Once appropriate means of searching and selecting YouTube data have been conducted,some considerations should be accounted for when extracting and interpreting data.As previously mentioned, views are typically an outcome of interest for studiesexamining popularity or engagement  may not be of interest at all.Ethnographic studies and content analyses of specific videos may not require viewsas either a search criterion or collect views as an outcome of interest .Conversely, given that an action must be taken by the user to leave a like ordislike, these metrics reveal more of the affective leanings that a video garners.When considering a metric for popularity, likes/dislikes should be considered intandem with views and upload date. The music video for Justin Beiber's song ‘Baby’;despite (or perhaps due to) being the second most disliked videos on YouTube with 12million dislikes, the video has also garnered over 2.5 billion views. Further, the ‘top comments’ are not ranked by most likes, most replies, ordate posted, but likely some combination therein. As such, the top comments may notreflect the most recent discourse or opinion surrounding a video, unlike sorting by‘newest first’.Research involving comments should also be evaluated carefully as they may representa ‘loud minority’ of the community and should be taken with a grain of salt,particularly for more polarizing or controversial topics , design, population, and outcome(s) or data ofinterest should be cogent. Further, methods used to search for YouTube data arelikely to extend beyond simply searching the platform itself and should bedocumented along with search results. Finally, interpretation of these data shouldbe done cautiously, as the representativeness of (1) views as a measure ofpopularity, (2) the engagement of users , and (3) the contentof creators may not be reflective of trends or behaviour outside of the platform.While not exhaustive, we feel these considerations, strategies, and the proposedschematic present as a conceptual foothold for future research using the YouTubeplatform.


Rapid ethical access to personal health information (PHI) to support research is extremely important during pandemics, yet little is known regarding patient preferences for consent during such crises. This follow-up study sought to ascertain whether there were differences in consent preferences between pre-pandemic times compared to during Wave 1 of the COVID-19 global pandemic, and to better understand the reasons behind these preferences.A total of 183 patients in the pandemic cohort completed the survey via email, and responses were compared to the distinct pre-pandemic cohort (n = 222); all were patients of a large Canadian cancer center. The survey covered (a) broad versus study-specific consent; (b) opt-in versus opt-out contact approach; (c) levels of comfort sharing with different recipients; (d) perceptions of commercialization; and (e) options to track use of information and be notified of results. Four focus groups (n = 12) were subsequently conducted to elucidate reasons motivating dominant preferences.p = 0.009), sharing information with the health care institution , sharing information with researchers at other hospitals , sharing PHI provincially , nationally  and internationally  compared to the pre-pandemic cohort. Discomfort with sharing information with commercial companies remained unchanged between the two cohorts . Significantly more pandemic cohort patients expressed a wish to track use of PHI , and to be notified of results . Thematic analysis uncovered that transparency was strongly desired on outside PHI use, particularly when commercialization was involved.Patients in the pandemic cohort were significantly more comfortable with sharing all information and biological samples  remained unchanged. Focus groups identified that the ability to track and receive results of studies using one’s PHI is an important way to reduce discomfort and increase trust. These findings meaningfully inform wider discussions on the use of personal health information for research during global crises.The online version contains supplementary material available at 10.1186/s12910-022-00790-z. Rapid access to patient health information (PHI) by medical researchers during pandemics is of paramount importance to advance the clinical understanding of novel pathogens and enable the swift development of life-saving treatments and vaccines. Health-related organizations must be able to develop patient consent policies and processes that are sufficiently nimble to facilitate timely access while adhering to ethical standards defined by governing bodies , as welPandemics pose unique challenges to traditional informed consent processes, which are ordinarily conducted by in-person, face-to-face conversations with clinicians or research coordinators, with direct opportunities to ask questions and sign physical consent forms. While pandemic policies and approaches will differ across international contexts, in our Canadian context, clinical activities were reduced and entry into hospitals was restricted to protect patients and health care workers. Unfortunately, this also impeded opportunities to engage in the dialogue necessary for valid informed consent. Strict pandemic visitor policies limiting who might be considered a patient’s essential care partner also had the potential to reduce a patient’s level of comfort with consenting to treatments or research studies. Solutions proposed and enacted to overcome these challenges included utilizing digital tools, documenting verbal consent, using electronic informed consent, and the employment of digital HIPAA-compliant tools such as e-mail surveys or telehealth assessments . LeveragThere is a paucity of literature on patient preferences for research participation during a pandemic. In fact, Gobat et al.  have rIn a prior study by our group , we sougThis study employed a mixed methods design with both quantitative (i.e. survey), and qualitative (i.e. focus group) strands, which were intricately linked in that the focus group guide was designed to further explore key findings from our pre-pandemic and pandemic cohort survey responses .A study information letter and link to a 10-min online survey , with comfort level modelled as a three-level ordinal outcome: uncomfortable/very uncomfortable versus neutral versus comfortable/very comfortable. Therefore, an odds ratio > 1 denoted increased odds of reporting comfort. Logistic regression models were used for questions not assessing comfort levels . The models adjusted for age group (< 49 vs. 50 to 74 vs. 75+), sex, treatment phase and education levels (completed post-secondary versus not completed post-secondary education). The proportional odds assumption was evaluated for the ordinal regression models.All participants who completed the virtual survey during the COVID-19 pandemic were invited by a clinical research coordinator email to participate in one virtual 60–90-min focus group. The focus group guide was pilot tested with a preliminary focus group of three patient partners to ensure that the topics were presented in a clear and balanced fashion. Four focus groups were subsequently conducted with 12 participants (response rate 6%) by the study’s lead author . For each focus group, participants were read an introductory script informing them of the study purpose and indicating that their participation constituted consent to participate in the study. The focus group guide , which were grouped based on similar features to create prominent themes and sub-themes . Three mp < 0.001), had fewer patients in the oldest age group of 75+ years , and was more likely to have completed a college or university degree . The sexes were similarly distributed across the two cohorts, with 50% and 49% of the pandemic and pre-pandemic cohorts identifying as female.A total of 183 and 222 patients in the pandemic and pre-pandemic cohort respectively, completed the survey (Table p = 0.009). They were also more comfortable sharing information with their own health care institution , and sharing information with researchers at other hospitals . Patients in the pandemic cohort were also more comfortable sharing information provincially , nationally  and internationally ; however, institutional partnerships seem to mitigate discomfort more during the pandemic . Figure p < 0.001), a larger percentage of pandemic cohort patients wished to track use of information and samples , a greater percentage wanted to be notified with regard to study results .More patients in the pandemic cohort were comfortable with sharing all health information and biological samples . They were also more comfortable sharing PHI with institutional researchers , and sharing PHI with researchers at other hospitals . Patients in the pandemic cohort were also more comfortable sharing provincially , nationally , and with commercial/institutional partnerships . The proportional odds assumption held for all ordinal regression models. The pandemic cohort’s preference to track use of information and samples remained statistically significant , as did their preference to be notified with regard to study results .Results from the multivariable regression models are reported in Tables expert knowledge is needed, and this will expedite research.I agree with the committee [making decisions]… there are the people involved in the law and ethics who come in that their judgment is much better than mine. FG1, P2 As a patient, I want to advance the research, as quickly as we can. I don't want that to become a deterrent FG1, P3Some participants noted that hospital committees would be necessary to render informed and ethically defensible decisions because respect individual preferences, and there remained a notable lack of trust surrounding privacy and uses of information.The nature of some studies that could be done you might not be in agreement with. There are people who have very strong views on certain types of research. FG2, P1Why should I believe you that my information is not going to be used in ways that I don't know about? Why should I believe you that my name won’t go up there or my personal information won’t be attached to the samples or research? FG2, P3So some of this information can go to [how to] cure cancer, and the other could go to, how to create maybe a biological weapon that would create cancer. FG1, P2However, individual consent was felt to be important to largest participant group, because some participants maintained that the communal benefit of research should outweigh individual privacy risks.You might get a lot of no’s, and eliminate the number of people that the researchers can select from, and they might need that. FG2, P3I do think the benefits of a larger contact pool would far outweigh personal freedom in this matter. FG2, P3In a similar sense, opt-out approaches to assemble a contact pool were acknowledged by participants to be important/valuable for researchers to access the breach of privacy and was associated with a loss of control.I think that if we are all automatically entered, there might be a breach of privacy…not all patients are updating even their family that they are sick… I'm not sure legally you can do that.You've already lost control of your health and you're now at the mercy of whatever has to be done next. To lose control over what's happening around you and the information that's being collected… there was just enough on my shoulders. FG1, P2However, due to both legal and ethical/pragmatic concerns, opt-in (i.e. being asked for permission before research contact pool entry) was often still preferred, as opt-out  was perceived to be a practical reasons with many acknowledging logistical struggles with providing information on a study-specific basis.In an ideal world, it would be nice to be asked. But, again, we go back to the question of practicality. FG2, P1It would be a nightmare for researchers to call everybody, every time they want to submit their information. FG2, P3Finally, the benefits of broad consent were recognized for ethical concerns about potential research uses, and so they indicated a preference to be informed, educated, and given a choice.I may have ethical concerns about the research being done, or who's doing the research…there are certain organizations that I don't ever want to have access to my information like insurance companies…I may consider the research being done unethical. FG1, P1I’d need more safeguards than asking one person once and then coming across their tissues 110 years later. FG3, P1Knowing the study would inform me, give me a choice, and also educate me about how our information is being used. FG1, P3However, many participants still expressed preferences for study-specific consent due to not wanting to share their PHI for this purpose at all, or to be given detailed information so they could make decisions on a study-specific basis.I would never ever want any information going to a company. FG1, P1.I want to know each and every time they need my information...And I would probably want to know way more information. I would want to know who's the sponsor? Who pays? Who is doing the studies? Where does it go? FG1, P2With regards to commercial entities, participants often expressed de-identification did not lessen discomfort.Data, whether it has your name or not, can be used against you…I mean, do you have a pre-existing condition? …Oh, I'm sorry, we won't insure you. So that data, even nameless, unknown, is already being used against us. FG1, P3Others stressed their view that legal and ethical norms as academic institutions or hospitals, with profits being their primary interest.The problem with companies is that they're not obliged to the same legal and ethical laws and norms as academic and non-profit organizations like academic centers, institutions and hospitals. So once my information goes there, it's already like I’m a little bit giving it out the door…I want to have way more control over that…There might be benefit of them curing cancer, but it's not their original intention. Their original intention is money. FG1, P3By and large we’d like to think [companies] all do things ethically with humanity in mind but quite frankly that is not the nature of the world. There’s a lot of industries that do not have humanity in mind, they actually have profit and shareholders in mind. FG3, P3My only concern would be [some] companies. I might not agree with or I might not want my information [shared] with them. I would not want them to benefit from my information, and by that I mean, companies that have any racist policies or something like that, that I don't agree with or I don't see as ethical. I would not want to help them with my information. FG2, P3Reasons behind participant discomfort often centered on companies, which respondents suggested may not be held to the same inequity related to commercial uses of PHI.I’ve seen situations where patients were deprived of treatment as a result of the inability to pay…So there’s a problem with a company putting something out like that, that has actually benefited from public support in terms of samples. FG4, P3I can’t allow companies using my information for them to make money and then the people that I want to help don’t get access to that. FG4, P2Many also noted significant concerns around I have no problem with [them] getting money from that. Because again, I know that this will help people. This will improve treatment. We live in a world where everything runs on money. So, I would support that. FG2, P3Yeah, I’m okay with my information going to companies for profit cause yeah, they’re major producers of most of the drugs and so I’m all for any type of research. FG4, P1So the price we pay for holding companies up I think, is to put a block on research that benefits us. FG4, P3Some participants did report supporting commercial uses of PHI because the work has the potential to benefit patients and blocking it could slow progress of important research.be informed and to receive study results was strongly preferred by nearly all participants.I think trust comes from asking the patient's permission. And perhaps even if they say, yes, that they agree that at some point, information comes back to say, what the results are? Because we go into a study, but we don't hear that about, like, what happened? Did it fail? Were you successful?…In politics, we keep hearing ‘be transparent’. So, in the medical profession, be transparent. Especially with for-profit companies. If they want to build trust, we need to see evidence over time…it would help to see how they used it and you know, how we may benefit as patients in the long run… FG1, P3Information is the key I think. The more information there is, the more trust people have in their health care provider. FG2, P3Getting permission from each individual patient, per the type of information they're prepared to share. Is there more information on the study? If it meets our ethical concerns? Can we trust who it's going to and for what purposes?…If it's a more open sharing of information with the patients, then there may be more trust developed. FG1, P1And also [we need] information on the nature of the studies. People are curious. They'd like to know where it is and what it's being used for. FG2, P1The more informed we are, the more likely we are to help. FG2, P2About two and a half years ago, I was in palliative care….At that point, if I had been in a study, and they had results for me, it would have been encouraging. I think to know that something positive is coming out of collecting your information…To know that you've somehow made a difference. FG1, P3The ability to multiple consent options upon entry into the healthcare system, and to have the opportunity to alter preferences throughout their care journey.What I would suggest is that anytime somebody comes into the hospital for any form of treatment is that everybody's filling out forms in the first place that says, ‘yes, I'm happy to have my information shared.’ FG2, P2It would be nice to develop an implementation pathway that any individual patient coming into the [hospital]…they are asked and signed and notified that their information in the affirmative could be used for research, like right up front. FG3, P3I think having a pop-up box, like maybe annually…So, in the beginning again, I might have said no. And then along with my treatment becoming more appreciative, how it's helping you because I'm learning more about [the hospital]…building that trust with your oncologist and your oncology team, it changes your outlook. So at this point, I might want to change. I might want to help. FG2, P3I feel strongly about having the chance to say no, at the start. FG2, P2[Should be asked] right at the beginning when you register…So you might say yes at the beginning and then along the way you might change your mind or there might be something that you don't want shared. FG2, P3If it's all on your personal portal with the options, it makes life so easy, and you know people can change it as they go and actually that makes it less bureaucratic because, you know, it's all there digitally. FG2, P2Many participants suggested, and supported, offering all patients to develop novel therapies, not everyone however, could afford them when needed. While some of these issues may seem insurmountable, innovative solutions emerged around how trust needs to be built, and this trust can serve as a framework for healthcare organizations to adapt their consent policies and processes. Participants underscored that transparency was key to building trust, in that they desired more information, wanted to be asked for permission, and indicated a desire to be able to change preferences over time. Digital dynamic consent platforms . Previous research has documented that patients are reluctant to share PHI for commercial purposes , 17, 18.s e.g., –21) are  are all Our results regarding mixed preferences around individual versus committee consent decisions, opt-in versus opt-out approaches, and broad versus specific consent strategies echo similar reports that preferences vary with the circumstances of the purpose, user, and the controls placed on use throughout the literature e.g., , 22); fu; fu22]);We acknowledge that this study was not without limitations, most notably the 6% response rate. While we acknowledge that this is a low rate, this was not unexpected during a time of global crisis; many people were adjusting to significant challenges related to employment, childcare, and lockdown restrictions. Despite this, we were still able to reach theme saturation  , and indIn conclusion, the Canadian Institute for Health Research (CIHR) Tri-Council Policy Statement for Ethical Conduct of Research with Humans  articulaAdditional file 1. Patient Consent Preferences Survey.Additional file 2. Patient Consent Preferences Focus Group Guide.