Knowledge and awareness regarding CN.

All participants were aware of the need to inform their contacts, either because they were notified themselves or because of information they obtained online or via others. The level of specific knowledge on transmission risks and who is defined as a contact was quite detailed among many participants: they mentioned bedpartners and people with whom you shared clothes and/or with whom you had physical contact for at least 15 minutes as contacts to be at risk. On the other hand, their responses showed that many aspects were still unclear, such as up to how long ago do contacts need to be notified, whether the fabric of furniture plays a role in the risk of transmission (leather, plastic, cotton), and whether you are still infectious after treatment.

“When you’re in a student association, you know so many people. It’s very difficult to distinguish who your contacts are and who not. But I think that the people I see daily and who are close to me, I consider them as contacts.” (Respondent 5)

Perceived risk of transmission.

Although participants did not directly state how big they estimated the risk of having infected others with scabies, this can be inferred indirectly from their comments. The participants (almost unanimously) estimated the risk of transmission to be highest when sharing fabric sofas, clothing, towels, or beds. Moreover, the participants mentioned that the following contacts were at risk of infection: individuals with whom they had more than 15 minutes of skin-to-skin contact, people living in the same household, (bed)partners, regular visitors, and others close to them.

At the same time, however, there were also several contradictions or uncertainties regarding what was perceived as a risk or not, such as the 15-minute skin-to-skin contact (is hugging risky or not?) and the shared use of sofas, with varying ideas on when this is risky or not, depending on the materials and the exact position taken on a shared couch. It seems participants often relied on intuition to assess the risk, even when aware of the existing guidelines. They, for example, perceived the risk to be low when, in their opinion, they had taken good preventive care.

“And, um, I did look up the RIVM guidelines, but I have to say that I didn’t really follow them strictly; instead, I relied more on my intuition and assessed for myself how likely it was that I might have infected someone.” (Respondent 8)

Most respondents also perceived a risk of transmission after their (full) treatment because treatment is not always successful, and one might still be infectious. They therefore avoided possible risks by not sitting on the couch for example and notifying their contacts again.

“…Then, um, because after that first application, I thought... I know that my boyfriend also wasn’t free of it [scabies] after the application. So, just to be sure, I didn’t sit on the couches or any fabric... I only sat on wooden surfaces and in my own room, not on the couch.” (Respondent 10)

Attitude towards performing CN.

All participants acknowledged the importance of CN in preventing the further spread of scabies and potential reinfection. However, they found it sometimes difficult to do so consistently.

“Yes, yes, yes, I personally don’t find it difficult [to notify] for housemates. I don’t find it difficult with my parents either, but it’s more about people you’ve slept with. That’s where things mostly go wrong, I think. It’s something people find harder to talk about, and I do too.” (Respondent 13)

The feasibility of contact notification depended on the type of contact and whether the person being contacted was being notified for the first time by the participant. Some participants found it harder to inform others about scabies the first time than during subsequent infections. This was because the first time they were concerned about other people’s reactions, or that their familiarity with scabies was limited. Others found it more difficult during subsequent infections, as they had to bother others again about a possible infection (and the preventive measures they had to take). Participants acknowledged the importance of knowing whom you contracted scabies from, as it helps in, for example, how far back in time you need to identify your contacts.

Emotions involved with CN.

All participants expressed negative emotions when reflecting on their contact tracing experience, although these feelings were followed by relief afterwards when the contact’s response turned out not to be bad. “Guilty” was the emotion most often used by the students to describe their feelings, because ”you burden someone with a lot of work”.

“Um, I think I felt guilty, because I was afraid, I might pass it on to someone else, rather than feeling ashamed, because I know it’s not something I can control. And that, that’s what I felt most; guilt, because I was afraid, I might burden someone else with it.” (Respondent 4)

Other emotions mentioned were feeling annoyed, feeling anxious or being worried about the other person’s reaction or about gossiping, feeling shame (e.g., because it is the umpteenth time), or feeling uncomfortable.

The emotions partly depended on the relationship with the contact. Emotions like worry were more prominent with casual bedpartners, acquaintances, or new partners, because it is more difficult to anticipate their response or because of fear of rejection. These emotions sometimes caused a delay in the notification or, in the case of one-night stands, in not notifying at all.

Quality of relationship with the contact.

The quality of the relationship with the contact sometimes determined whether the contact was notified. This was true especially for one-time bedpartners. Some participants stated that their decision on alerting somebody was related to a person being a good friend or being nice.

“Well, there was one guy I saw only once. Then I was unsure, I’m never going to see him again, so I thought, well, maybe I don’t need to tell him. But I did like him, so I thought, yeah. And I would want to know myself too, so I think I ended up waiting almost 4 days before telling him.” (Respondent 1)

Self-efficacy regarding CN.

Most participants were confident or even very convinced that they had been able to trace down all their contacts correctly. Moreover, they were confident that their approach to notify their contacts was effective. Their confidence was based on arguments such as: the decision to notify someone was well thought through; they could freely talk about their scabies infection; the conviction to not have infected somebody; or they had contacted nearly everybody in their network. Previous CN experience was also used as an argument to support their self-efficacy.

“I just felt that I had handled it well myself.” (Respondent 7)

Disclosure of scabies infection.

Most participants seemed to be quite open about their scabies-status and disclosed it also to people who were not necessarily contacts who had to be traced.

“Well, in that sense, my group of friends wouldn’t need to treat themselves either, because it said you would need to have had skin contact for 15 minutes or if people had slept in your bed, but that’s not the case with them. I still did let them know, also because we had something planned. I thought, well, guys, I think it’s just polite to let you know. If anyone feels uncomfortable about it, then I won’t come, but I’ve already applied the treatment, so it should be fine.” (Respondent 3)

Participants could openly talk about scabies and make jokes like making a “scabies counter” (i.e., counting the number of times someone had experienced scabies) on the wall. Parents or other family members, (close) friends, or people they were visiting were among the people to whom they disclosed their scabies infection. Reasons for disclosing were to enable others to take preventive measures (to prevent transmission), having a close relationship with the person, or more spontaneous when it happened to come up in a conversation. At the same time, participants also stated that they did not announce their status to just anybody, when it seemed unnecessary. In some situations, the participants had to disclose their status (e.g., when avoiding a handshake). Only a few were more hesitant or had delayed disclosure, partly for fear of stigmatizing responses.

Intention for CN in the future.

All participants intent to notify their contacts when they would get scabies again, and almost all participants indicated that they would do so in a similar way as they did before. Some participants added that they would first check (again) the guidelines on contact tracing, that the next time they would add less apologies, or that their approach would depend on the situation or person.

“Yes, I think so, but it also depends on… I don’t know. It’s complicated because it really depends on the situation, who is involved and what’s going on. But I think with my housemates and my parents, I would always tell them. Outside of that, it really depends on the situation.” (Respondent 13)

Perceived social norm.

Participants had varying opinions about how well others notify all their contacts (descriptive norm). Most seemed positive and believed that others notify quite well, particularly their friends and people in their network. Other participants were more skeptical and felt that especially parents and casual bedpartners were not always informed.

Few participants found it difficult to estimate how well others notify their contacts. Feelings of shame, fear of stigma and personal experiences of not receiving notifications themselves were cited as reasons why they expected that their peers did not notify all their contacts adequately. They also believed that their peers found it annoying to have to inform others, especially when they had to do so repeatedly because of reoccurring scabies. Selfishness was another argument they mentioned, as students may not feel any personal gain from notifying others, or they may simply feel that it’s not their problem whether contacts avoid getting scabies or not.

“…I’ve heard stories where people think, oh well, they won’t find out for another eight weeks anyway, so I just won’t tell them… “(Respondent 14)

Moreover, people whom you don’t see again are easily ignored, because there is no risk of re-infection. The participants mentioned that their peers feel it is too much trouble or they are lax. Some also mentioned that for students, tracing their contacts might not be as much a priority as the treatment itself.

Participants unanimously stated that people in their close social network (i.e., housemates, close friends, bedpartners, and family) would expect to be notified by them in case they would have scabies (injunctive norm), although it may depend on the type of contact.

Interviewer:” Yes, and who does expect from you that you tell them?”

Respondent: “Well, definitely my housemates, uhm friends, yes people whom I slept with, my friends. Especially, when you are somewhere and you have scabies, you tell them “I have scabies, so I cannot sit on the sofa” …” (Respondent 7)

Received response to notification and disclosure.

When asked about how people responded to their scabies infection, it was not always clear whether the participants described people’s responses to their scabies notification or people’s responses to their scabies disclosure. In general, most participants mentioned that the responses were considerate, especially those of other students and housemates they notified. Their peers were understanding and reacted calmly, as scabies is considered “normal” among students. The participants received supporting and sympathetic reactions like “too bad for you”, “it can happen to anyone”, and “it is not your fault”.

“But no, it really felt like a weight off my shoulders when I told them, and everyone reacted normally, thankfully, and hoped it would go away as quickly as possible.” (Respondent 8)

However, some students received less positive reactions, such as people responding startled, grumpy, annoyed, looking at you like you are dirty and keeping extreme distance. Or they reacted just with a lack of empathy, particularly people outside of the student circle that were less familiar with scabies, such as parents, family, and colleagues. The participants often stated they understood these (stigmatizing, selfish) reactions. One participant explicitly stated the responses were sometimes quite selfish (i.e., the contacts were thinking about themselves and the actions they had to take to prevent scabies infection) and did not sympathize with the burden for the participant of having sleepless nights.

Experienced stigma.

Most students did not feel stigmatized themselves, but they assumed that their peers may feel stigmatized. However, in between the lines a fear for stigma was apparent, and sometimes stigma also seemed to have been experienced. For instance, respondents stated that scabies is often perceived by others as “dirty”, your own fault, and related to (casual) sex. They also mentioned that scabies is sometimes wrongly perceived as an STI, which can make people hesitant to talk about it. However, according to them, stigmatizing responses mostly come from people outside the student world and not from peers, because scabies among students is quite normal nowadays. Finally, several students would welcome stigma reduction; more acceptance that scabies can happen to anyone and more familiarity with scabies may help in improving CN.

“If the stigma around STI lessens a bit, I think it will also be easier for people to notify others [for scabies].” (Respondent 7)

Social support for performing CN.

The majority of students stated that they did not need (and had not needed) any social support when informing others about their scabies infection. They did come with some suggestions for support, but this was often followed by statements like “I don’t need it but maybe others do” or “I’m not sure”. Two participants mentioned that they sometimes discussed with their friends or roommates if and how to notify contacts.

“I think I always knew who I needed to message, but I usually discussed it with my housemates, like, ‘Okay, guys, who should I inform, how should I handle this, and what exactly should I say?” (Respondent 13)

CN information sources.

Participants used various sources to gain knowledge about CN, such as the guidelines from the National Institute for Public Health and the Environment, and www.thuisarts.nl, an independent public website with reliable and accessible information about health and disease created by general practitioners and medical specialists. However, according to some participants, there is a need for clear and comprehensive information about who should be notified and who not, and how far back in time contacts should be informed. For others, the information is clear. Moreover, several respondents mentioned that CN was only briefly discussed during the GP consultation or that the GP did not emphasize the importance of CN enough. Several participants stated that although most people are aware of the need to notify contacts, there should be more emphasis on the urgency of CN.

“Clear guidelines: Do you need to notify people up to 6 weeks back? Do you need to notify people up to a week back? And out of all those people, who exactly should you notify?” (Respondent 12)