Lay online communication about health-related issues has in recent years largely been associated with the spread of misinformation and decreased trust in healthcare. Such communication has included claims about systemic side effects of the copper IUD. In Sweden, a social media group centered on this issue now gathers around 8,700 members. This study aimed to use the case of reported yet unestablished side effects of the copper IUD to investigate experiences of and reasoning about healthcare encounters between caregivers and patients contesting established medical knowledge.We conducted qualitative, semi-structured, digital group interviews with members of the social media group  and with midwives and gynecologists . We also gathered essays written by social media group members (n = 23). The material was analyzed thematically.The participant accounts pointed towards tensions related to principles of evidence-based medicine, i.e., perceived insufficiency of research on the safety of the copper IUD and lack of clarity in routines for reporting and following up suspected side effects, and of patient-centered care, i.e., listening respectfully to patients. Tension between caregivers’ obligation to adhere to evidence-based medicine while also providing patient-centered care was noted.Healthcare providers’ efforts to assess and address patient claims contesting established medical knowledge should include ensuring and communicating sufficient research, clarifying procedures for reporting suspected side effects, and improving person-centered care. This can increase the quality of care while contributing to the mitigation of distrust in healthcare and the spreading of health-related misinformation. Over recent decades, the internet and particularly social media have created unprecedented opportunities for lay people to seek and share health-related information. A large share of women, in particular, use the internet to find and share such information . In 2015Lay online communication about health has been linked to increased contestation of expert knowledge  and the At the same time, noted effects of seeking and sharing health information online include increased involvement in and knowledge about health , 14, potMoreover, structures and practices in healthcare through which some persons or groups are construed as knowledgable and others are not –40 have In the new digital informational landscape, where patients are able to take part of both other lay people’s experiences and medical research in ways not possible before, and where the patient-caregiver relationship has radically shifted towards enabling greater patient empowerment and contestation of medical authority , 18, a tThe importance of long-acting reversible contraceptive methods (LARC), including copper intrauterine devices (IUDs), for the prevention of unintended pregnancies is emphasized internationally and in Sweden . The effNegative views on the copper IUD have often been associated with communication in social networks, particularly online, where negative commentaries on IUDs have been prevalent , 57–59, Online communication about contraceptives has included claims about systemic side effects of the copper IUD, attributed to the release of copper from and chronic inflammation caused by the device. Noted symptoms are both somatic and psychological, and include anxiety, depression, panic attacks, fatigue, heart palpitations, weight gain, hair loss, skin problems, headaches and insomnia. Such reports have circulated internationally. They have been briefly noted in studies , 60, 61 In Sweden, claims about systemic side effects of the copper IUD are largely centred on a social media group, founded in 2014 and now gathering around 8,700 members . In a suLargely due to communication in the noted social media group, a number of suspected side effects of the copper IUD have been reported to the Swedish Medical Products Agency. This led to an investigation which concluded, in 2018, that no scientific evidence supports the claims . Meanwhivetenskap och beprövad erfarenhet) ) Alongside PCC, the maintenance of sexual and reproductive health and rights (SRHR) is an important principle for reproductive healthcare, internationally and in Sweden , 83. TheRegarding contraceptive care, a lack of knowledge on concerns about and experiences of LARC methods has been pointed out, despite the importance of understanding factors influencing contraceptive choices , 58, notThis study aims to use the case of reported unestablished side effects of the copper IUD to investigate experiences of and reasoning about healthcare encounters between caregivers and patients contesting established medical knowledge. The following questions guide the study:How do women reporting that they have experienced systemic side effects of the copper IUD describe and reason about their encounters with healthcare?How do midwives and gynecologists reason about reports of such unestablished side effects and about how they do, would or should respond to them in the clinical encounter?After an initial analysis of our material, a third question was formulated:How do the women’s and the caregivers’ concerns and reasoning relate to the healthcare principles of EMB and PCC?This is a qualitative study, based on seven online group interviews with, and 23 essays written by, members of the noted social media group centered on suspected side effects of the copper IUD, and on six online group interviews with midwives and gynecologists.Participants from the social media group (SMG) (n = 35) were recruited through invitations posted in the group, with permission from the administrators. The group interview participants (= 23) were women aged 20–56 years, most with tertiary education, from across Sweden. Their professions included teaching, nursing, medicine, complementary medicine, research, and media communication. On the request of some SMG members who were reluctant to participate in an interview, an invitation to submit written essays on experiences of the copper IUD was also shared in the Facebook group. 23 essays, 1000–4800 words long, were collected, 11 of which were authored by interview participants. No sociodemographic data was gathered for the writers. All essay participants and 21 interview participants had personal experiences of health issues they associated with the IUD. The remaining ones had professional or scholarly interest in the issue.Healthcare providers (HCP) (n = 15) were recruited through an advertisement in a national midwifery journal, an invitation posted on Facebook, and emails to reproductive healthcare clinics and professional networks. 12 were midwives and three gynaecologists, in line with 80 percent of contraceptive counselling in Sweden being conducted by registered midwives . The parEssays were collected in October–December 2020, through an email message to LG. The group interviews were conducted via Zoom (2–4 persons/group), with SMG participants during March–December 2020 and with HCPs during January–June 2021, by both authors and with LG as principal convener. Our decision to conduct the interviews online, due to covid-19 and the geographical dispersal of participants, posed limits on the participant interaction associated with focus groups , which wEssay participants were instructed to describe (1) how they had come believe or suspect that copper IUD use may result in side effects unrecognized by healthcare, (2) the function of the Facebook group or other social media in this process, and (3) if they had been in touch with healthcare with regard to this issue and, if so, how they had experienced the healthcare encounter(s). The interviews with SGM participants were guided by the same questions. The HCP participants were asked about their experiences of and thoughts about reports of systemic side effects of the IUD, and about how such claims were and should be handled professionally in the clinic. The interviews were conducted in Swedish and lasted for 1–2.5 hours. After the noted number of group interviews, analytic saturation  was deemThe interviews were audio recorded on a device separate from Zoom and transcribed verbatim. The anonymized transcripts and essays were analysed using a reflexive thematic approach , 89, aidIn line with Braun and Clarke’s  early deAdhering to a critical realist paradigm , we assuMW is a public health and social work scholar and LG is specialized in gender studies. Both have experience in conducting interviews on sensitive topics. No previous relationships existed between authors and participants, except for one HCP who was personally acquainted with one author. Informed consent to participation was given at the beginning of the group interviews, and through the writing and submission of essays.The study was approved by the Swedish Ethical Review Authority (2019–03017) and reported in line with Standards for Reporting Qualitative Research (SRQR)  S1 Tabl.SMG participants described of a range of somatic and psychological issues, such as those mentioned in the introduction, which they linked to copper IUD use. Their severity varied, having been seriously debilitating for some, in a few cases lasting up to 30 years during which the IUD was not connected to the symptoms and therefore not removed. While a few suspected the IUD to be the cause before coming across other people’s reports, most did not make that association until finding the social media group or similar forums. Alongside personal experiences , particiOf the 15 HCP participants, 12 had heard of the social media group or the claims about copper-related side effects prior to being invited to this study. One had joined the social media group, due to an interest in learning about the issue. 12 had encountered reports of unestablished side effects in the clinic, for most only a few times. One participant referred to such reports as increasingly common. Another noted that patients may believe that they suffer from such side effects without mentioning it, for example when requesting IUD removal, “because… they know that we don’t agree with them” (HCP1:1). A few referred to a sense of stress in relation to the issue, due to feeling criticized by patients or pushed to take responsibility for something beyond their powers, and to pressure to avoid professional “failure” (HCG6:1) by ensuring the use of contraceptives, preferably LARC.Principles of EBM; Principles of PCC; EBM vs. PCC? and Reconciling EBM and PCC .We have a medical background and we do lean a lot on research and the evidence that exists and according to which we are obliged to work. (HCG5:2)When asked, around half of the HCPs stated that they did not believe in the claims about copper-related side effects. They expressly said or appeared to tacitly assume that existing guidelines about the copper IUD have a firm evidence base, which made them skeptical of the claims. One participant stated that it has been”proven that … copper is not dangerous, not at all” (HCP1:2). Another noted that she trusted her midwifery training and that this is “the standpoint we should take” (HCP1:3). While the emphasizing of the scientific evidence-base of guidelines can thus be distinguished from more pragmatically observing the professional obligation to follow them, these two aspects seemed to fuse without friction for many HCP participants. As seen below, however, some expressed degrees of uncertainty.Several SMG participants expressed an understanding of the need and obligation of healthcare providers to follow clinical guidelines. For example,I am not angry with the midwives and gynecologists that have, that I’ve seen, because they’ve just got, kind of, guidelines from above. (SMG1:1)A central point of contestation here was, however, whether guidelines regarding the copper IUD are based in robust scientific evidence. SMG participants argued that these guidelines had not only failed to enable the alleviation of their health problems, but that they are also based on insufficient research. While some studies on links between IUD use and blood copper levels  were poi[T]here is no scientific basis because no one has made any scientific studies. No, and that is why you don’t see any correlation. (SMG6:3)This stated paucity of research was tied to regulatory demands being less rigorous for medical devices, including copper IUDs, than for pharmaceutical drugs (e.g. ). RelateConsidering this, SMG participants argued that while following clinical guidelines, caregivers should be open to the problematization of their evidence-base. They pointed to the importance of critical thinking, including reflection on potential gaps and limitations in existing research. In the words of one participant, herself a medical doctor:In healthcare we should work within, as it is called, science and proven experience. And the science is missing here. That’s what we need to open up for. (SMG1:2)Around half of the HCP participants expressed some uncertainty regarding how to assess the reports of systemic side effects, with reference to medical science continually evolving and, in line with SMG participants, to a relative lack of research on the issue. Participants here pointed to”far too little synthesized information” (HCP3:1) and “a clear knowledge gap” (HCP5:2).Yes, research is needed, quite simply. (HCP1:2)One midwife remarked on not having sufficient knowledge to discern the truth value of the claims about copper-related side effects and having had trouble locating information about how to counter them. Some affirmed the importance of following clinical guidelines, underscoring their evidence-base, but later argued for taking the reports of side effects seriously and conducting more research on the matter. For example, the participant stating that it has been”proven that … copper is not dangerous, not at all” (HCP1:2), later referred to the importance of “listening to the women”, “taking them seriously”, and updating research on the matter.We must follow the development–we cannot sit in the 70s and say that this copper IUD is good. “No, it’s not good”, they say… They you have to, kind of, look closer and deeper. (HCP1:2)Meanwhile, one HCP participant argued that more research would likely not be seen as satisfactory by women reporting systemic side effects, as she perceived these claims to be driven by experiences of online community over and above sincere interest in medical research.As a basic way of monitoring post-marketing side effects signals , the repI have also reported those side effects (…) and I’ve contacted the midwife and asked her to make a report and, like this. But if feels like it’s a black hole. There’s no, kind of, nothing happens. (SMG 7:2)One HCP participant noted having reported suspected unestablished side effects of the copper IUD. A few others remarked that they were unsure about how make such reports, overall or with reference to copper IUDs being medical devices rather than pharmaceutical drugs. Some stated that they and their colleagues were generally not very good at reporting side effects, due to lack of time or feeling it was not their responsibility. Two said they had encouraged patients to make reports, with one arguing that patients should describe their own symptoms.[T]he message should come from the one who owns the experience, then it becomes real and truthful and us caregivers should not reformulate it. (HCP6:2)A debated issue was which events that merit reporting. A few referred to pregnancy, uterine perforation or defective IUDs as proper occasions for reporting. A few affirmed that more unexpected or unestablished potential side effects should also be reported, while some argued that these do not warrant reporting as that requires belief in the plausibility of the causal link.It’s also about us being licensed, that we should work according to, kind of, science and proven experience, and then that runs a bit counter to (…) report[ing] maybe a side effect that… that there is no scientific evidence for. (HCP1:1)While some HCPs thus expressed reluctance to report potential side effects they did not believe in, SMG participants referred to a sense of a ‘catch 22’ situation whereby only proven side effects are judged to merit reporting, even though a function of such reporting is to identify previously unacknowledged effects. This suggests that existing evidence may constrain further development of EBM through processes shaping side effect signal reporting.When HCP participants reflected on how to relate to patients referring to unestablished side effects, principles of PCC were commonly addressed. The imperative of listening to and respecting the patient, even when the caregiver does not agree with her, was highlighted here.I do listen to what you say to me. I mean, I can’t dismiss what you say to me. All women are, like, unique. (HCP2:1)After all, that’s our assignment, to meet and try to understand each other. (HCG5:2)The importance of striving towards mutual understanding, and of the patient feeling satisfied with the healthcare visit, was noted. One participant emphasized that the health issue at hand is real for the patient, and that the caregiver must somehow meet her there.I don’t believe in it, but at the same time (…) you should still show them respect, I feel. That they are feeling ill. (HCG1:1)Aside from listening to patients being an obligation, some HCPs noted that this approach can decrease tension during the clinical encounter. Referring to a clinical meeting with a patient expressing suspicions about IUD side effects, one participant narrated:I perceived her to be very relieved in that situation of not being questioned, to not get that reaction that, “no, do you know what dear, that’s not the way it is, because I know better” (…) I know it was a satisfied patient that left from there and that it’s largely about just that. That regardless of whether we think they are right or wrong, we have to listen and be humble to their experiences. (SMG3:2)It was also stated, however, that such practices reflecting PCC principles were not always followed by caregivers in this and related contexts. The presence, at times, of a derogatory attitude or a “very negative tone” (HCP2:2) was noted:Healthcare gives itself the right to declare people stupid [… which is] demeaning. (SMG2:2)One participant mentioned having met patients expressing “guilt and shame” (HCP5:1), interpreting this as being due to previously not having been met with respect by caregivers.They expect resistance, that I, as a healthcare provider, will kind of cut down on them and say “no, that’s not the case” or “no, that’s not correct”. (HCG5:1)In some contrast to HCP participants’ affirmation of the importance of listening respectfully to patients, a major theme in SMG participant accounts was not having felt respected or listened to by caregivers when seeking help. Participants referred to experiences of feeling belittled or offended, being laughed or sneered at, or declared stupid, crazy or hysterical by caregivers when expressing their suspicions about the IUD being the cause of their problems.I was open about my suspected side effects in connection with removal. I was completely belittled by the doctor who all but scorned me and said I shouldn’t believe in things I read on Facebook. (Essay 2)One participant mentioned not having been permitted to speak about her experiences:[S]he interrupted me and then she said (…) yes but now it [i.e. the IUD] is out, now it’s good, now we move on. (SMG2:1)Others referred to an unwillingness to discuss any potential explanation for the symptoms in question, once the copper IUD had been brought up.[A]s soon as I had said I wanted to remove the copper IUD because I experienced side effects (…) he wasn’t interested in talking side effects. It’s not like he gave an alternative explanation (…) There was not even a conversation. It was just a, a stamp on my forehead and then full stop. (SMG3:1)One woman described having been asked to leave the clinic:Yes, she said if you continue to claim that you are poisoned by a copper IUD, there’s the door, you can go now. (SMG4:3)Some emphasized that this had occurred when they were in a position of weakness due to illness, and that not having been taken seriously had added to their feeling of vulnerability:[I]t’s been really hard to be sick but I almost think that’s been the worst, to not be believed, and to be so, yes, that you’ve felt like a child. (SMG4:1)Many reported having been referred to mental healthcare, prescribed antidepressants or diagnosed with stress, despite having insisted that their ailments were somatic. It was remarked that once a mental health diagnosis is given, somatic care can become increasingly difficult to access. One participant did report having been taken quite seriously by her caregiver, commenting that this was possibly due to her being a medical doctor herself.A discussion of direct relevance to SRHR , 99 concWhen I finally said “didn’t think I was going to be cross-examined when I’m the one who decides over my own body”. Then I was finally got help taking it out. (Essay 23)Among HCPs, those addressing the issue agreed that patient requests for removal should be met. One mentioned having seen “desperate” (HCP4:2) patients who had sought but not been granted IUD removal by other caregivers. She added that while she would remove an IUD even if the patient had not used it for long, she would express her disapproval:[I]f you don’t want it then I’ll take it out, but I still have to say I don’t think it’s what’s best for you! (HCP4:2)Another HCP participant mentioned a degree of resistance toward IUD removal, with reference to the issue of needing to replace it with another contraceptive method.In SMG participant discussions, issues related to gender and women’s health were brought up in relation to limited PCC, in all group interviews and some essays. Participants referred to a “deprioritization” (SMG3:2) of women’s health issues, which can be “swept under the carpet” (Essay 15) or “waved away” (SMG5:2), and historical examples expressive of a dismissive attitude towards women’s health issues were noted.[T]here is still (…) some kind of, this nineteenth century view on women as hysterical (…) That you don’t take stories seriously (…) like no, but it’s just their imagination. (SMG7:3)Similar issues were discussed among HCPs, although to a lesser degree. Some referred to women’s care being deprioritized, women not being taken seriously, and caregivers displaying condescending attitudes towards women. Meanwhile, some argued that this negative outlook on women’s healthcare should not be exaggerated. One stated that in comparison to other women’s health issues, the present one can be seen as less significant.The issue of how to navigate potential tensions between listening to the patient’s perspective and following clinical guidelines was central in the interviews with HCPs. After underscoring the need to follow clinical guidelines and research, one participant stated:But this doesn’t mean that we shouldn’t respect someone’s experience and respect what she tells us (…) even though we don’t always believe that the women’s experience is what has really happened. (HCG5:2)A distinction is made here between respecting “someone’s experience”, or “what she tells us”, and believing in her experience. Similarly, another participant put it concisely:She is to be taken seriously, but the linking of the symptom to copper cannot be taken seriously. (HCP6:2)While these accounts convey that it is possible to respect a patient’s subjective experience while dismissing her understanding of its objective causes, a sense of friction between adhering to EBM and listening to the patient was also noted.[W]hen you talk about it, it almost feels contradictory, what we’ve said, kind of. That we are to meet [patients] with respect, and we are to listen, and so on, but at the same time… I mean I wouldn’t report this as a side effect (…) So, really, it feels a bit contradictory what I say. (HCP1:3)Although not as explicitly spelled out, a corresponding contradiction can be traced in other HCP participants’ reflections. For instance,You can’t neglect that they feel like this (…) but (…) nor can I, kind of, be swept away into something that I don’t… that maybe I don’t think is right. (HCP4:2)Meanwhile, one HCP participant expressed the viewpoint that listening to and acknowledging a patient’s experience is difficult without affirming, at least to some extent, her understanding of that experience. She simultaneously pointed out that the social media group can be seen as a sign that healthcare has failed to meet and communicate constructively with some patients.Somewhere healthcare has also failed in meeting these persons, which has caused them to have to seek in, for example, then, social media (…) Maybe we should meet these patients in this way so that they actually come to us and ask for advice if they have problems, so we can try to help them (…) To actually see the patient and say “yes absolutely, I hear you” and, I mean, that you validate the patient’s problems, that “it’s real. It’s not fake. You’re not stupid. You’re not crazy”. (HCP3:1)Among the SMG participants, some also pointed to a sense of tension between caregivers’ obligation to adhere to EBM and their own wish to be treated in accordance with PCC.Of course they have to balance a bit there. Both in relation to me, kind of, to understand me in my situation, and to be faithful to the grounds they have, which are (…) scientifically tested. (SMG2:4)However, while principles of EBM and PCC were placed in a relationship of some opposition in HCP accounts, in SMG participant discussions they are not as easily distinguishable. Here they largely intertwined, as not having their understandings of the causes of their symptoms taken seriously was tied to not feeling respected as persons. For example, referring to wanting to be treated”as a thinking person” (SMG3:1), one participant noted that instead of just being dismissed, she would have preferred responses and discussions grounded in science:[E]ven if these side effects had been imaginary, I would have liked to have been approached in a more correct and scientific way, with explanations. (SMG3:1)Moreover, not having their beliefs about the causes of their symptoms taken seriously was linked not only to feeling disrespected, but to not being offered adequate help with symptom alleviation. When issues were attributed to mental rather than somatic factors, for example, this was not only perceived as offensive but also as an obstacle to diagnosis and cure. Thus, EBM was ineffectual.It’s scary in that sense that we’re actually very (…) vulnerable because, I mean, I can’t go to healthcare and say, kind of, can you help me (…)I feel completely left to myself .Several SMG participants stated that their experiences of limitations in both EBM and PCC had caused their trust in healthcare to decrease. Concerning PCC, trust was noted to have diminished due to being “neglected” (SMG3:2) or badly treated.You so trusted in healthcare, I did too. Now I only trust healthcare if I’ve broken a foot, kind of, other than that I don’t trust healthcare at all (…) because you’ve been so badly treated. (SMG4:3)With regards to EBM, trust was noted to have decreased due to realizing, in the words of one participant, “how much we don’t know in medical science” (SMG1:2).I guess I’ve seen conventional healthcare as very evidence-based (…) But in this case it doesn’t seem to be very evidence-based. So there I’ve, I’ve really had a change of views. (SMG3:1)Noted consequences of this decrease in trust included refraining from seeking care for other ailments and seeking care from less evidence-based forms of practice, such as complementary or alternative medicine or experimenting on one’s own :[Y]es, he [the doctor] waved it away, kind of. Since then I’ve gone to alternative healthcare. (SMG5:2)With aspects of EBM and PCC again intertwining, one participant stated that it should not come as a surprise that people become “questioning towards healthcare” when they are met with a bad “attitude towards us which is actually not based in very much research” (SMG3:2):Then it’s healthcare itself that should work on the credibility capital that they’ve lost. (SMG3:2)Both SMG and HCP participants pointed to the risk of growing distance and distrust between caregivers and patients. HCPs noted that decreased trust could spread to others who do not have similar experiences but come to expect them, as a “secondary distrust in healthcare” (HCP3:3), creating an “evil spiral when the trust in healthcare isn’t there” (HCP3:2). In sum, then, these accounts suggest that limitations in EBM, PCC or both can instigate and strengthen distrust in healthcare.Apart from indicating tensions related to, and between, EBM and PCC, the discussions suggested ways of resolving such tensions. A major argument made by SMG participants was that more research should be done on the safety of the IUD, to better undergird medical practice in line with EBM. Several HCPs also referred to a need for such research. In line with SMG participants, some of them stated that it impossible to say that the IUD does not cause any of the reported side effects, if no research exists to confirm that.[T]hat’s why we need more research on the copper IUD (…) so it’s not myths but that we know more: this is the way it is or this is the way it is not. (HCP5:2)In one case, further research was explicitly pointed out as a solution to the noted tension between following the principles of EBM and those of PCC.[I]t almost feels contradictory, what we’ve said, kind of. That we are to meet [patients] with respect, and we are to listen, and so on, but at the same time (…) The solution would be (…) to do more research on it.(…) I also think that would be the solution. That you did some scientific research. Relatedly, many SMG and some HCP participants stated that caregivers should think critically about and be open to the fallibility and continuous evolution of medical science.[Y]ou have to be able to question things (…) [J]ust because you question things it doesn’t mean that you’re unprofessional. (HCP2:2)The notion that research should be conducted by “neutral” researchers (HCP2:2), in the sense of being unaffected by any vested interests, was also expressed.beprövad erfarenhet) should be gathered through asking patients more routinely about experiences of contraceptive use and inquiring about contraceptives when investigating health issues.SMG participants argued that in absence of sufficient research, proven experience ([N]ow that the scientific evidence is missing (…) you have to work up the proven experience. And you do that by actually asking the patients; how did it go with the IUD, now, did you have any side effects, how has it worked? And work open-mindedly with that. (SMG1:2)While asserting an understanding that clinical practice needs to rely on research, several SMG participants argued that caregivers ought to be able to mention to patients that some copper IUD users have experienced symptoms which they associated with the device:[T]hat you, still, yes, there might be a possibility. We can’t confirm, but. (SMG7:1)[I]t should be evidence-based and there must be science behind everything you prescribe and all that. But there’s actually nothing stopping anyone from saying that I have experience or I’ve heard from others that this has actually happened. (SMG1:3)Correspondingly, one participant related that her midwife mentioning having heard stories of unestablished side effects of the IUD had led to removal and significant symptom alleviation.SMG participants and some HCPs also argued for clarified and improved routines for following up patient experiences through reporting suspected side effects. SMG participants noted that this would improve both PCC and EBM, as taking individual patients seriously by making reports will enable any follow-up with potential implications for EBM.The healthy way of reacting then should be no, but this doesn’t sound good. This sounds serious. Now let’s help each other report this so we can build a knowledge bank and, kind of, see that, OK, we are getting these amounts of reports, it’s time to do research on this (…) [Y]ou take it stepwise, sort of, through starting by taking each individual patient seriously. (SMG7:3)It was pointed out, furthermore, that the social media group could be seen as an asset for healthcare, through signaling a potential need for, and offering input that might inform, research. This perspective contrasted with the views of some HCP participants, who spoke of health information circulating through social media as representing “fear-inducing campaigns” (HCP6:2) and as something of an antithesis to factual information.In addition, and as noted, SMG and HCP participants spoke of the value of caregivers treating patients respectfully. SMG participants expressed that they would have liked to have been listened to, and to have been shown “more empathy” (SMG3:2) and interest, in healthcare.This qualitative study has used the case of reports of systemic side effects of the copper IUD, unrecognized by healthcare, to investigate experiences of and reasoning about encounters between caregivers and patients contesting established medical knowledge.Both SMG and HCP participants pointed to tensions related to, and between, principles of EBM and PCC. Concerning EBM, a relative absence of research on potential side effects of the copper IUD was pointed out in all SMG groups and by some HCP participants, alongside a lack of clarity about routines for reporting suspected side effects. With regards to PCC, both participant groups observed the obligation of caregivers to listen respectfully to patients, while particularly SMG participants pointed to instances where this had not been seen in practice. A tension between caregivers’ obligations to adhere to EBM and to provide PCC was noted. While HCPs pointed to the possibility of listening to patients, in line with PCC, without taking the content of their claims seriously, among SMG participants these two aspects were connected, as not being taken seriously was tied not only to feeling dismissed but also to being inadequately helped. SMG participants and some HCPs pointed to potential resolutions of tensions related to PCC and EBM through caregivers assessing, developing and communicating relevant research, assembling proven experience, clarifying procedures for reporting and follow-up of suspected side effects and listening respectfully to patients.Health-related communication online, including communication about suspected side effects of contraceptive methods, has in recent years increasingly been associated with the spread of misinformation, linked to distrust in healthcare , 5, 100.It has been pointed out that diversion from PCC through dismissing patient concerns with potential contraceptive side effects, or resisting IUD removal, can contribute to resistance to IUD use . MorisonWorth noting here, firstly, is that limitations in PCC  have beeSome SMG participants reported having faced difficulties in getting their copper IUDs removed on request. While HCPs generally agreed that removal should be granted, some voiced a degree of reluctance. Although such reluctance is at odds with the principle of patient autonomy central to PCC, it is in line with previous research pointing patients who have met resistance when wanting to have their copper IUDs removed , 111. InSecondly, previous research has indicated that caregivers agreeing with principles of PCC does not self-evidently guarantee that they practice accordingly. For one thing, clinical encounters in Sweden have been less patient-centered when patient concerns were multiple and not purely somatic . BodegårAlongside limitations in PCC in contexts characterized by medical uncertainty , 112–114In light of the above, it is worth considering whether a climate of distrust  in womenSMG participants, and some HCPs, argued that the evidence-base of copper IUD use should be strengthened, through more research and improved routines for reporting suspected side effects. Many related the paucity of research to weak regulatory demands for safety research on medical devices and some expressed concerns with financial conflicts of interests.Any lack of relevant research is problematic for EBM, and for PCC in which provision of evidence-based information is an important part , 68, 77.Weak regulatory demands for research on medical devices has been critiqued by healthcare professionals e.g., , 118), w, w118]),Concerns about financial conflicts of interests have also been voiced in research. Greenhalgh et al. 2014) argue that the main challenge to EBM is hidden biases due to vested interests of pharmaceutical and medical device industries, and researchers have affirmed that heightened efforts to curb conflicts of interests in medical research would not only benefit EBM but decrease mistrust in healthcare  and the 14 argue Thus, while a few HCPs noted that more research or improved reporting routines would likely not be accepted as sufficient by patients claiming unestablished side effects, we deem it reasonable to assume that stronger regulatory demands for research and clarified procedures for reporting suspected side effects would make healthcare less open to criticism and distrust, particularly when considering the scientific orientation of many of the SMG participant’s arguments . This isThe paucity of research can be seen as a claim to hermeneutic injustice , the forAmong HCP participants, further research was pointed out as a potential resolution to the sometimes explicitly noted tension between PCC and EBM, i.e., between listening to the patient and taking her claims seriously. The reporting of suspected side effects was also noted as a means to resolving this tension. As one SMG participant put it, the reporting of possible side effects can be a way of strengthening PCC by taking the patient seriously, while also enabling the development of EBM through the evaluation of any build-up of similar reports.Moreover, the tension between principles of EBM and PCC noted in the participant accounts can be related to observations of a general conflict between EBM and PCC, i.e. between following standardized guidelines based on scientific population-level study and tending to individual patient needs –70, 73. Researchers have also argued that dominant paradigms in contraceptive care may rely on a narrow definition of scientific evidence, and that in order to be appropriate and patient-centered it should also engage with evidence grounded in patients’ experiential knowledge , 74. InvThis sense of conflict between forms of evidence or knowledge can be juxtaposed with studies pointing to lay perceptions of caregivers as a source of positively charged information about the copper IUD, whereas negative accounts, and information about side effects, are primarily shared via social contacts , 35, 44.While a few SMG and HCP participants noted that the social media group in question could be viewed as a resource for healthcare, signaling a need for and potentially contributing to medical research, Richards et al. , p 7 argThe SMG participants were highly educated overall, and likely more engaged and well-resourced than many other members of the social media group. In turn, the HCPs were probably more interested in the topic of potential systemic side effects than many other caregivers. These issues are, however, common to many qualitative studies, and do not detract from the relevance of the themes generated in our analysis.While the accuracy of our interpretations were not checked by participants , the truWhile the generalizability of elements of our analysis to other cases of clinical communication involving lay contestation of established medical knowledge may be limited, we believe that our arguments can be used in reflection on and assessment of other such cases, not least in so far as, as noted above, our findings echo, and add new nuances to, previous findings concerning contraceptive care.This study of how women making claims about systemic side effects of the copper IUD reason about their encounters with healthcare, and how caregivers reason about how such claims are or should be met, points to tensions related to the principles of EBM and PCC. Thus, while studies on attitudes towards IUDs recommend responding to negative accounts through countering misinformation , 13 and S1 TableThe table shows the Standards for Reporting Qualitative Research (SRQR) checklist, with status marked X indicating that the study follows the respective recommendation in the way and to the degree deemed appropriate by the authors.(DOCX)Click here for additional data file.


This study aims to empirically examine the role of ambidextrous leadership on employees’ ambidexterity and job-directed performance. Ambidextrous leadership encompasses a leader’s capability to stimulate exploitative and explorative activities in employees. Specifically, the study explores in detail how ambidextrous leadership is linked to two types of job-directed performance in health professionals, namely service quality of care and creativity, in addition to what role employee ambidexterity has in this relationship.N = 258 health professionals of in-home care services across municipalities based in Norway. The study’s conceptual model was analyzed through structural equation modeling partial least squares with SmartPLS 3 software. Mediation by Bootstrap was used to analyze the indirect relationships.A cross-sectional survey was developed, and data were gathered through convenience sampling of Ambidextrous leadership was found to have a direct impact on both employee service and quality of care (The results show that ambidextrous leadership and employee ambidexterity promote the job-directed performance of health professionals. Thus, a practical implication is that health-care organizations should recruit, train, and develop their leaders to become ambidextrous leaders, in addition to being aware of the multiple direct and indirect effects of practicing ambidextrous leadership. Doing so will have a direct positive impact on the level of service quality and employee ambidexterity. Leadership matters in all types of organizations; specifically, “leadership is important to quality …in healthcare organizations” , p. 1. AUndoubtedly, leadership has an impact on numerous aspects of an organization, including its individual members. Most of us probably have some experience with “good” or “bad” leadership practice and, respectively, how it positively or negatively influences and affects our thoughts, emotions, and activities, and how it can even have an impact on job performance . Clearly, organizations need to understand the role of leadership practice.Specifically, this paper focuses on health professionals defined as health workers with a role at the “forefront” of in-home care services . Health Two aspects make it potentially challenging to deliver an excellent level of service quality to users of in-home care services. First, the content of services offered to users varies greatly. It includes providing users with medical help, support in daily life activities, rehabilitation, and nursing care . Second,Consequently, the work role of health professionals is relatively embedded with complexities and challenges. Because of this, there is a need for managers of health-care services to perform a leadership style and daily leadership practice that, as much as possible, help health professionals “to think and act” in such a way that they become excellent “frontline” providers of SQC to users of in-home care service. It is reasonable to assume that in such complex work contexts, leadership practices that are both explorative and exploitative may be more appropriate and thus contribute to increasing health professionals’ service quality. A recent review by Vaughn et al. indicates the importance of appropriate leadership practice for service quality. The authors found that organizations that struggled to improve quality were characterized by disconnected leadership . ClearlyMoreover, given the complex and challenging workdays that health professionals face, creativity and ambidexterity among the employees may also be important , which iBased on the above considerations, two important aspects shaped the aim and focus of this study. First, according to Ree and Wiig, there is a knowledge gap regarding quality issues when one considers studies undertaken within a home care context , especiaGiven the knowledge gap in previous research, this study has two overall aims. First, we explore the role of ambidextrous leadership practice and how it is linked with the SQC of health professionals. Second, we examine whether and how ambidextrous leadership is capable of having an impact on more indirect aspects related to health professionals’ SQC. This latter aim is manifested in employee ambidexterity and employee creativity. Rooted in a literature review of the concepts, a conceptual model is developed and further analyzed with Partial Least Square – Structural Equation Modeling (PLS-SEM).The study responds to a recent call to further research on ambidextrous leadership within a health-care context . To the The paper is arranged as follows. First, the concepts of interest are defined, and linkages between them are discussed. Second, hypotheses are presented, and a conceptual model is depicted. Third, the methodology, description of the chosen context, and results from the empirical study are reported. Fourth, this section discusses the findings and proposes suggestions for further research based on this study. The paper ends with a conclusion.The first part of this section describes the concept from Fig. Leadership style is suggested to be a key factor in influencing employees’ attitudes and behaviors . Consequopening” and (ii) “closing” leadership behaviors … to act ambidextrously” , p. 696.Third, the dominant and one-sided view in the literature is to describe AL and EA as positive and something “all” employees perceive as uniquely good and are grateful for. We do not know much about “the other side of the coin” and if there are some potential negative characteristics related to AL and EA. Future research should examine whether there are some situations and/or circumstances, personality traits, or states where AL and EA have negative impacts on SQC and C or other potential job-related performance. For example, when leaders practice (AL) “opening” and “closing,” it may cause frustration, anxiety, tendencies to mental or physical burnout, and fear of punishment for not correctly practicing (EA) “exploration” and “exploitation.” Is there a need to have some safeguarding mechanism in place associated with AL and EA? Future research could include  trust between leaders and employees as one type of safeguarding mechanism. Another suggestion for future research is to include the concept of psychological safety as a mediating safeguarding mechanism. The study of such potentially damaging aspects associated with AL and EA could be achieved by using a quantitative method, qualitative method, or a combination of the two methodological approaches . This would contribute to a balanced view and a nuanced perspective about how and when AL and EA can be perceived as something “good.”This paper contributes new knowledge regarding AL and EA, which is a domain that has been neglected in previous health services research. Specifically, the findings reveal how AL and EA can promote health professionals’ SQC and C. The study implies that health-care organizations must be determined to employ, train, and expand their leaders to become AL. Doing so will have a direct impact on SQC as well as EA. In addition, AL will also transform EA in a positive direction and indirectly stimulate employees’ C as well as strengthen health professionals’ SQC offerings. Consequently, health organizations should be aware of those multiple positive “domino effects” achieved by having leaders practicing AL.


The coronavirus pandemic was declared one of the deadliest pandemics in the world’s history, surpassing even the 1918 flu pandemic in some countries. The speed with which the virus spread around the world did not leave the slightest chance to prepare even for protected health systems of developed countries, let alone countries with fragile health systems, experiencing a large number of problems at work even at regular times. Although burnout is included in the ICD-11 classification only as a syndrome caused by occupational stress and not a disease, unrecognized and unaddressed, it has the capacity to transform into a wide range of mental disorders, including depressive and anxiety disorders. This poses a threat to healthcare workers and patients, so it is very important to understand the scale of the problem and the factors that can play protective and triggering roles.Our objective was to evaluate point-prevalence of burnout syndrome among healthcare workers from LMIC during the COVID-19 pandemic.We conducted a systematic search in Ovid MEDLINE, Embase and PsycInfo, as well as a manual search in PubMed, Google Scholar and Grey Literature to select studies describing burnout prevalence in healthcare workers from low-and middle-income countries during the pandemic. We used a wide range of subject headings as well as main keywords, such as “mental health”, “burnout”, “coronavirus”, “health personnel”, “depression”, “anxiety”, “developing countries” and their synonyms study design search had no limitations and included cohort, case-control, cross-sectional and randomized controlled studies. All identified studies were screened and a final sample of relevant studies was used for data extraction and quality appraisal.Data was extracted from 15 studies and included 21,007 individuals from eight countries. The proportion of female healthcare workers in our sample was 69% and the overall mean age of participants was 34.3 (2.3). Burnout prevalence varied from 3.62% to 90.1%. Gender, age, workload-related factors and institutional support were mentioned among the most important aspects influencing the burnout level. Clinical heterogeneity was a major drawback of our study as cut-off points for overall burnout and burnout sub-scales were inconsistent even among studies using the same inventory.It is of critical importance to adopt a wide range of burnout preventive measures for healthcare workers, in particular, easy access to mental health support services, proper organization of human force and more comprehensive educational training in emergency situations. Furthermore, it is suggested, that researchers use a more precise and evidence-based approach to the use of measurement tools in order to increase the reliability of their work and recommendations.None Declared


Loneliness and social isolation reduce physical and mental wellbeing. Older adults are particularly prone to social isolation due to decreased connection with previous social networks such as at workplaces. Social technology can decrease loneliness and improve wellbeing. The COVID-19 pandemic prompted quarantine and social distancing for many people, creating a context of widespread social isolation.In the current study, we interviewed middle-aged and older adults' (n = 20) about their use of social technology when social isolation was common: during the early part of the pandemic while social isolation and masking were still required in the United States, between August 2020 and June 2021.We analyzed the data using three-phase coding. We compare our results against the model of the bidirectional and dynamic relationship between social internet use and loneliness.We found that during the COVID-19 pandemic, our participants experienced decreased social interaction and moved toward online interaction. Participant use of social technology supported the stimulation hypothesis - that is, they used it to maintain existing relationships and social connection. The findings also add novel evidence that the stimulation hypothesis endures for older adults during enforced isolation (in this case due to the COVID- 19 pandemic).Based on our data, we also propose adding the presence or realism of connection via social technology as a main factor to the model and engaging with construal level theory of social presence to fill in critical variables of this relationship. We further find that digital exclusion acts as a barrier to obtaining benefits from stimulation via social technology and recommend that further research examined digital exclusion in relation to the bidirectional and dynamic model. Finally, we discuss recommendations for improving social technology to benefit middle-aged and older adults. As adults age, they experience significant changes in family structure and companionship as children leave the home, they leave the workplace, or as older friends and family members pass away , 3. ThisMany people across ages are lonely and have limited access to social connection for various reasons. In addition to old age, this can include distance from family members, disability, and socioeconomic status . One potential solution is social technology: devices or applications that facilitate humans to socially interact with each other . When peHowever, many older adults lack access to these social technologies or have difficulty using them effectively , 10. QuaIn the current study, we explored older adults' subjective experiences with current social technology to better understand their challenges with it, with the goal of improving older adults' ability to use social technology to connect with others and decrease loneliness. We use these data to explore when social technology use stimulates vs. displaces social interaction connection . We assessed how the three levels of digital exclusion  affected older adults' experience with technology.Social isolation is a lack of social connections or lack of emotional closeness with one's social connections, and it leads to increased loneliness as well as various negative physical and mental health outcomes , 12. LonLoneliness is prevalent in older adults, as children leave the home, and as older friends and family members pass away , 3. FurtWhile social connection and isolation are important issues in general, they became particularly pertinent during the COVID-19 pandemic. A virus formally known as SARS-Cov-2 was first detected in December of 2019. By March of 2020, many countries began to take public health measures to contain the spread of the virus. At the beginning of data collection for the study in August 2020, more than 10 million people in the world had been infected by the virus  tends to support the stimulation hypothesis . Due to However, as of yet there is little research whether the stimulation or disengagement hypothesis of social technology use will be more strongly supported during different types of loneliness or causes, such as transitory vs. chronic loneliness  and duriSocial technology can help improve social connection and overall wellbeing for socially isolated individuals – but only if practitioners implement it based on the actual needs and wants of the population geared toward digital inclusion and to stimulate social connection. To this end, we conducted a qualitative interview study exploring middle-aged and older adults' subjective experiences of and challenges with using social technology. Qualitative studies of this kind are critical to understanding middle-aged and older adults' relationship with social technology because they provide rich data about user experience and suggest insights not accessible in quantitative studies , 52, 53.We expanded on previous research findings that social technology correlates with a sense of social connection under the stimulation hypothesis , 32, 33.Three main research questions guided this study:What are middle-aged and older adults' subjective experiences of using technology to socialize?What do older adults see as the benefits and challenges of social technology?How has the COVID-19 pandemic impacted middle-aged and older adults' experiences with social technology?This study was approved by the New Mexico State University Institutional Review Board.Participants were 20 adults residing in the United States during the COVID-19 pandemic. We used a sample size of 20 because in qualitative samples saturation—that is, when new information tends to significantly diminish , 55 —typM = 57.6; SD = 6.15). Participants were recruited through a prior online mTurk questionnaire .n = 14) strongly preferred interacting with their friends and family in-person, as compared to interacting via any form of social technology. Sam [65] said that the most rewarding social interactions for him were “the ones where basically I'm face-to-face with people… and we're having a conversation.” Hannah [54] expressed a strong distaste for video call socializing, saying “the Zoom  really becoming a thing shut me down a little bit. Because I prefer in person, you know?” Mark [57] mentioned lack of physical affection as an issue with social technology, saying, “I'm a kind of pretty huggy person, and you just can't do that through technology.”Most participants  in that way, because the ways in which they are rewarding are different, are very, very different… I can't really evaluate them and compare them to each other.”Eight participants reported that they were slower to try new technology than their friends, while six participants felt that they were early adopters. The remaining six participants felt that their adoption rate of new technology was highly context dependent. When asked if she was quicker or slower to try new technology than her friends, Grace [53] replied, “I think I'm both. It would depend on what it is. When it's for work, they make you do it, so you're quick. The social media stuff I was slow.”Three participants reported that they wanted to have low involvement of social technology in their everyday lives. Adam [58] said of phone notifications, “I usually turn them all off. I turn off every notification I can… I don't want this thing to tell me to do something. In fact, if it did tell me to do something, I would throw it.” Two participants were very attached or “plugged in.” Qadira [52] preferred to have a high level of technological involvement in her day-to-day life and expressed that she would “rather have the notification than not be notified and miss something.” However, most participants (The remaining fifteen participants) expressed both desire for low involvement and desire for high involvement, often reporting conflicted emotions or expressing wanting different levels of technology involvement in different aspects of their lives. Lehan [50] felt that high technology use was required even if it was not preferred, saying, “there is no day or no time that I am (away from it) … I have a lot of things I do with my phone you know so that's always there.” Caroline [51] said, “I curate, I will say, my notifications pretty heavily.” Hannah [54] said, laughing, “I want to be notified, but I don't want to be notified. How about that.”Participants discussed the benefits and challenges of using social technology. Main themes of benefits participants experienced were: (1) They maintained contact with existing social networks and (2) The benefits were better during video calls than other social technology. Main themes of challenges of social technology were: (1) Aversion to or difficulty with new social technology, (2) Wanting improvements for current technology, including for (a) Internet and bandwidth issues, and (b) the drawbacks from too much screen time, and (3) Difficulty maintaining contact with individuals who have limited expertise with social technology. Participants' experiences of challenges varied, and included lack of access to high-speed internet, difficulty learning how to use new technology, and issues regarding overall screen time.n = 12) expressed some level of appreciation for social technology and reported gratitude for the technology helping them keep in touch with their existing social networks. This was the primary benefit of social technology to participants; they did not see social technology as preferable to in-person interactions. Grace [58] said, “It has a purpose… touching base with some old friends, keeping up with faraway friends, even keeping up with friends that are close.”Many participants  classes in the last 2 weeks because for some reason, they just wouldn't hook up… I could use some extra help, I guess. I don't know if it's the program or me.”(n = 13) reported that they did not want to acquire any new technology. Nine of these participants said that alternatively, they wanted the technology and platforms they already used to be improved. Nate [64] said, “I like to rely on like what I have as far as a phone.” Desires for improvements varied widely. David [62] expressed frustration with attempting large group calls over video conferencing software, saying, “the current technology works well with small groups; it does not work well with anything large… that's probably where the technology fails completely.” He also expressed frustration with an inability to have side conversations in group video calls, saying “There's no way to have that kind of a large group interaction (with) small group breakouts.”When asked what new social technology they wanted in their lives, most participants Eight participants reported that their biggest difficulty with social technology was with internet connectivity itself. Ian [51] said, “I think the biggest problems that we have with Zoom sometimes are bandwidth issues. On one side or the other, there are bandwidth problems… that will slow things down.” Beverly [58] works as a rural public defense lawyer, and she stated that it was difficult for her and her clients to access adequate internet and phone services:“We live in a rural area, and sometimes our internet (connection) is degraded just by weather, you know, windy weather and things like that. So that's not Zoom in particular, but just internet (connection) in general… a lot of my clients do not have access to the internet… around here, phone service can be bad. The cell towers are few and far between sometimes and so it's hard to get ahold of people.”Regarding overall screen time, nine participants stated that they found the amount of time looking at screens to be an issue. Lehan [50] stated that due to the COVID-19 pandemic, “I definitely say that… screen time has increased.” Rebecca [55] stated, “I did experience headaches and I think my eyesight kind of went down a little bit, from looking at the screen… but it wasn't based on COVID per se… I was looking at the screen a lot anyway.” Theresa [54] said, “Yeah, absolutely, you get fatigued by it… your brain just starts to feel foggy.” Nine other participants stated that they spent a large amount of time looking at screens, but did not view it to be an issue, as they had not experienced any negative effects from screen use. Fred [64] said, “I guess I get as much screen time as I want. So, it's not really an issue.” Eleanor [68] described having a screen-focused lifestyle, but not having problems with that:“It's really not a problem for me, but I used to work as a programmer. All day long I stare at computer screens, then I would come home and play computer games. So, all night long and staring at computer screens it's really not a problem.”Seven participants discussed difficulty maintaining contact with others because those people lacked access to technology or lacked the ability to use that technology effectively. Beverly discussed difficulty keeping in touch with her daughter, saying “Marie doesn't like technology, and so if you don't see Marie in person, you don't see Marie.” Eleanor [68] felt that lack of access to social technology was an issue with both her mother-in-law and aunt:“My mother-in-law has a lot of trouble just doing anything other than basic stuff on her phone. And if you're not there to show her how you did something… she doesn't retain how to use it. And … I couldn't do Zoom with (my aunt) because I don't think that she has…the pieces like the camera, the microphone. And I don't think that she's comfortable enough with technology to connect via something like Zoom.”Due to the COVID-19 pandemic, many forms of in-person socializing decreased, and use of social technology increased. We asked participants about their social lives before the pandemic, how their social interactions had been impacted by the pandemic, and about changes to their use of social technology during this time. Three themes emerged: (1) Decreased social interaction during the COVID-19 pandemic, due to (a) Growing apart from family members and (b) Keeping distance from older or vulnerable relatives, whereas others felt (c) no differences due to the pandemic. They also felt a (2) Shift from in-person to online interactions, and subthemes of (a) Feeling forced to use technology, (b) Feeling the change is permanent, and (c) Using new technology for the first time.n = 15). Eleanor [68] stated that her social life had changed because she “can't get together with local friends anymore.” Grace [53] said, “There's a lot of friends that I would like to see, but I don't want to endanger them. And I also have an older mom (living) with me…so (I) definitely have not been socializing.”Most participants reported that their social interaction had decreased during COVID-19 pandemic (n = 9), friends (n = 11), and coworkers (n = 4) over the course of the pandemic. Reasons included a lack of casual interactions that usually happen in a workplace or neighborhood (n = 6), and that participant had difficulty making plans for social interactions (n = 4). Adam [58] mentioned drifting apart from people that he used to encounter casually in his workplace: “There's people that I work with, that only show up at work 2 days a week because of the pandemic. And we used to like talk almost every day, you know, we'd run into them, but… (we) just don't do that since then.” Theresa [54] discussed growing apart from the parents of her daughter's friends:Participants reported growing apart from their family members  some of the people that I connected with the closest.”Keeping distant from older, more vulnerable relatives was a recurring theme. Seven participants discussed difficulties with being unable to visit their parents due to health concerns. Fred [64] said, “my mother who lives in Wisconsin. I haven't been able to see her… the pandemic has hurt that.” Beverly [58] discussed challenges communicating with her mother over video call: “I think the Zoom visits with my mom are hard because of her dementia issues... when you see her in person, you can hold her hand or pet her shoulder, the physical contact is missed.”Five participants reported that the COVID-19 pandemic did not have much of an effect on their social lives. One participant's reason for this was lack of adherence to safety guidelines. Hannah [54] stated that throughout the pandemic, she was “still going to restaurants, bars, establishments, where you can still meet up and visit. It really didn't change a whole lot.” One participant, Eleanor [68], stated that her pre-COVID social life was already mostly online:“Most of what I do for fun while socially distancing is much the same as I did before, in truth… I have friends in other parts of the country as well, so I played video games with them, and that's most of my regular activity with them. So, I was doing that actually before COVID.”Three participants attributed this lack of negative effect to their own introversion, and to not having a very active social life before the pandemic. Beverly [58] explained that she is “kind of an introvert. I like quiet by myself activities.” Caroline [51] said, “I'm still an introvert, so  hasn't changed as much for me as probably for other people.”Eleven participants reported a switch from in-person interactions to online or phone interactions, and 12 participants reported that their overall use of technology had increased. These included one-on-one interactions, small groups of friends or family members, and more formal groups, particularly churches. Theresa [54] said, “One of the things that hit hardest is that… we belong to a church membership, so all of our meetings ended up going online.” Beverly [58] talked about informal check-ins saying, “my church started doing, like, once a month Zoom meetings, just to like, say hi to everybody, and make sure people are doing okay.” Fred [64] was part of a board game meetup group, “…that met every, every Tuesday at . But that got canceled because of social distancing, of course. So, then we moved to online… so we play the same the same games but online. And for me, it's not nearly as much fun doing it online, as it is in person.”Qadira [52] felt that regular video calls with friends in other states was particularly helpful during early stages of the pandemic, when restrictions were most stringent:“Especially in the beginning of the pandemic, … we just were not coming out at all, even taking walks and things like that. We actually set up Zoom meetings with my friends… we had maybe four or five people at a time … that would get together… That was interesting, and that was at least some way that we could see each other. And my friends were all scattered in different parts… it was nice to be able to all get together at a certain time and see each other, even though we weren't in the same towns anymore.”David [62] felt that his social media use had increased because “everybody is trying to maintain the social contacts that used to be done in person… so there's a lot more stuff to be engaged with and respond to than there was before.”One theme that emerged was that of feeling forced to use social technology. James [70] stated that due to the COVID-19 pandemic, “you can't go out, you have to use your computer.” Grace [53] discussed using video call software while working from home and said that for her social technology use, “quite a lot that changed just for us to be able to work and keep our jobs going.” Katherine [60], who works as a professor at a community college, said “Yes, I was forced to become more technologically savvy.” She also discussed lack of access to social technology and the necessity of social technology as an issue for her students:“When the quarantine happened… all public schools willing to quarantine and lockdown. And there was a huge portion of our population on the border and on the native American reservations, who don't have broadband, they don't have internet, they don't have computers, period. They can't even get Wi-Fi for their phones, you know, suddenly there was a whole stratum of the population who were not participating, you know, who weren't living. And we went into this strange mental concept that if you weren't connected to the Internet, you are not alive… I think that's very dangerous, especially for children, to think they are not leading a valid life if they do not have access to the Internet. That's very disturbing.”Of the participants whose use of technology increased, eight participants reported that they felt these changes would become permanent, especially given an increase in virtual meetings or classes, and an increase in overall remote work and telecommuting. Adam [58] taught at a university that had transitioned from in-person courses to video call lectures via Zoom. Adam said, “going to Zoom, I don't think this is going to go backwards… I think the Zoom thing for lectures is a permanent change.” Grace [53] said of video conferencing:“For work wise, I think it's going to be around. I think that they're learning that sometimes this is a lot cheaper than flying somebody in. And I deal worldwide with people, so this is a lot easier than trying to get people together at a location, just for a couple of meetings, when you can do it this way. And I'm also seeing that sometimes when we used to pick up the phone and call that instead we're doing the video chatting at work, and so that's nice.”Twelve participants reported that they had begun using video call technology for the first time during COVID-19. Grace said, “I never Zoomed or did any video conferencing before COVID, never did. Never, ever, ever.” David [62] said, “prior to COVID-19, I never used Zoom, never used Discord.” Nate [64] talked about various video calling apps, saying, “there's another one on the phone… called Duo. I use that a lot for chats, visual chats. So those things I didn't really use much before COVID.”Four participants reported that their use of social technology had not changed at all during COVID-19. Caroline [51] said of her social technology use during social distancing, that it was “almost identical. Yeah, I have not… felt or noticed that much of a difference.” Ian [51] said, “(I) used it all before… no, there was nothing new that I found myself using.”We conducted a qualitative interview study with middle-aged and older adults during the first 18 months of the COVID-19 pandemic, to better understand their use of social technology during this period of social isolation, the ways in which they used social technology to combat loneliness and social isolation, and to identify their challenges and frustrations with existing social technology. We found support for the stimulation over displacement hypothesis in this population and context. We also recommend including the importance of realism or presence of social technology stimulating social interaction, as well as variables related to digital exclusion. We organize our findings by theoretical finding below.Most individuals in this study had their social lives drastically altered by the COVID-19 pandemic. Most of our participants' social interactions decreased. Some participants described decreased social connection due to a decrease in casual, incidental interaction, such as passing coworkers in a hallway. As expected, many participants reported increased social isolation and loneliness during social distancing. This is very similar to what older adults experience as they age and quit work, children move out, and friends and family members pass away , 3. TherAlong with decreased interactions, many people switched from in-person socialization to socializing via technology, and several participants transitioned from working in-person to teleworking.Participants expressed gratitude for being able to keep in touch with friends and loved ones while abiding by social distancing guidelines imposed for the COVID-19 pandemic. Consistent with previous research supporting the stimulation hypothesis , 33, 61 Further, most participants felt conflicted about how involved they wanted to be with technology. This was because they wanted to be unplugged, but also did not want to miss something important. This also feeds into the stimulation hypothesis in application to this context, because participants explicitly said that they did not want to disconnect from their lives, but instead wanted to use technology to enhance connections.Older adults primarily use technology to maintain existing relationships. Thus, the current study also strengthened previous findings that older adults primarily use social technology to maintain existing relationships, rather than to forge new ones , 10.Most people strongly preferred interacting in-person. Technology that helped them feel more like they were interacting in person  was better than others . Thus, video calls were one of the most frequently used forms of technology. Many participants began using video call technology for the first time in their lives. Participants who had used video call technology previously reported a large increase in the frequency of its use.However, some participants strongly disliked socializing via video calls due to a preference for in-person interaction or feeling that it was not the same or as good as in-person socializing. Shortcomings of current social technology included limited physical affection and inability to socialize effectively in large groups.These data support and extend prior findings on the importance of vision and touch and social interaction over technology. A recent study found that older adults prefer using visual communication, and one participant indicated the importance of touch . The preAlthough our participants did not explicitly say it, this preference for realism in online interaction shows parallels to a need for perceived presence during the interaction. Prior work shows that people feel more social connection with others through social technology when the interaction medium more closely parallels the real world – that is, social connection is stronger moving from text to audio, to audiovisual, to telepresence robot , to presence or realism as a new variable in the model, with increased presence or realism of the online interaction increasing the likelihood of supporting the stimulation hypothesis. Presence or realism could also relate to other psychological factors of distance identified in construal level theory  . We propl theory , such asSome researchers are working on technology to address some of these limitations of social technology and improve presence and realism , such asIn the study, the data support that many older adults are digitally excluded related to social technology on all three levels: skills, access, and tangible social benefits –45. PartApproximately half of participants indicated difficulty learning how to use new social technology, and others had older relatives with difficulty in learning how to use the technology. This included phones, computers, social media, video calls, and other applications. This difficulty in learning the technology supports why past research found that older adults preferred more familiar forms of social technology such as writing letters .Due to unstable internet connection, insufficient bandwidth, rural place of residence, or socioeconomic status, many participants struggled to use social technology, particularly synchronous social technology like video calls or group chats. We also found that participants reported frustration with programs glitching or not working as intended. These types of glitches may be an intersection between exclusion based on skills and access – that is, some glitches or malfunctions may be things that occur because of access issues but that people could troubleshoot with the right skills. Future researchers should consider the overlap of these three levels of digital exclusion and how they may build on each other to create even greater levels of digital exclusion.Of participants who stated that their technology use had changed during the COVID-19 pandemic, the majority felt that these changes would become permanent. In particular, participants expected that telecommuting would become more common, that socializing via video call with friends or loved ones who lived far away would continue, and that remote learning and education would continue to increase, particularly at the college level. Some participants were encouraged by these changes and wanted them to become permanent because of how they could connect them to people around the world. Others expressed frustration with the thought of continuing to telecommute and attend meetings remotely; given that they were frustrated with current technology, they predicted that this advance of technology would lead to further frustrations and difficulties with social interactions. Thus, the results illustrate how digital exclusion can propagate over the long-term.This builds on the relationship between social internet use and loneliness—that is, for groups such as older adults who experience digital exclusion, they do not gain as much of the social and long-term benefit of social stimulation from using social technology. Thus, although older adults tend to follow patterns of the social stimulation hypothesis, when they do not have as much skill or access to technology, they are still not reaching their potential to benefit from social technology for social connection. Indeed, a prior study found older adults with higher affinity for technology also felt more connected during a period of social isolation (the COVID-19 pandemic) . This maMany participants reported difficulty keeping in touch with people who could not learn how to use social technology, and sometimes difficulty using it themselves. User experience researchers and designers should seek to make social technologies easier to learn how to use for older adults, so they can better use them to avoid loneliness and its detrimental health effects. Decreasing user frustration with social technology has the potential to greatly improve older adults' wellbeing and overall health. Specific changes that would improve use are:Make technology simple for older adults to learn, use, and recover from failures, such as following guidelines at described in Kurniawan and Zaphiris  and TsuiImprove video calls for low internet connectivity or improving internet connectivity to rural areas.Create and use alternatives to sitting and looking at a screen to decrease screen fatigue.Improve video calls for groups, such as allowing side conversations without the need for breakout rooms.We also refer readers to Greenhalgh et al.  for a moHistorically, new technology is developed for professional use and as adoption continues becomes available to consumers. Consumers can be creative with how they use technology to engage in social interactions. In the context of mobile telepresence robots (MTRs), Boudouraki et al.  posit thThis study was conducted with 20 residents of the United States. Because government response to the COVID-19 pandemic varied, the experiences of individuals in other countries would likely vary as well. Additionally, participants in this study were residing in various US states, and local regulations varied significantly, including which businesses were allowed to operate during which time periods. This increased variability in participants' experience of COVID-19 regulations and severity of social distancing. Future studies should examine the COVID-19 pandemic experiences of older adults from other countries. They should also examine older adults in social isolation due to non-pandemic reasons.Most participants in the study were also healthy Caucasians. Although we studied one major population that experiences digital exclusion, older adults, other groups suffering inequalities also experience further digital exclusion, including those from historically marginalized ethnic groups –79 lowerAnother major limitation is that we conducted this study remotely via teleconferencing software due to COVID-19 safety regulations. All participants in this study had access to video call technology. Older adults without such access may have had very different experiences with technology in general and specifically during the COVID-19 pandemic.We compared our results against Nowland et al.  model ofThe study also supported the stimulation hypothesis during enforced isolation during the COVID-19 pandemic and adds to Nowland et al. (The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.The studies involving humans were approved by the New Mexico State University Institutional Review Board. The studies were conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.KL, DL, HP, MRF, and KT contributed to the conceptualization and design of the study. KL, DL, and HP collected data. JMR, DP, SK, and KL created the coding scheme and performed the coding. KL wrote the first draft of the manuscript. MFR, DP, and SK wrote sections of the manuscript. MS contributed further edits of the paper. MF revised the manuscript after reviewer comments. All authors contributed to revision, read, and approved the submitted version.