This paper problematizes the notion of “intent” through the concept of “involuntary resistance”. Departing from the narratives of employees in nursing homes in Sweden during the Covid-19 pandemic in 2020 and 2021, we suggest that neoliberal norms and a local management that capitalizes on social hierarchies  were the context of the strong biopolitical state management that occurred due to the Covid-19 pandemic. The friction between different forms of governing became a seedbed for an involuntary resistance with an unclear intent against the state recommendations. This sheds light upon the need to (re)frame the current dominance of specific types of knowledge that are constructed in the field of resistance. We suggest that new paths of thought are needed—within social sciences—that work towards a wider conceptualizing of resistance, which embraces practices that lie outside the common thought of dissent. This paper rethinks the concept of “intent”, through identifying a pattern of involuntary resistance that took place in nursing homes in Sweden during the Covid-19 pandemic. A “common story” within social sciences depicts resistance as a social practice that is carried out by organized resistance actors who have a clear intent against defined and known power-relations. Or as pinpointed by Sherry B. Ortner , p. 174,we interrogate the “involuntary” resistance, which was provoked by multiple and interacting forms of power during the Covid-19 situation, with a focus on the question of intent. We suggest that “resistance”, as an analytical concept, has a lot to gain from including a wider range of practices other than only those that are intentional, deliberate and planned. Among other things, the resistance of the healthcare workers we interviewed in 2021 could be understood as an effect of frictional processes of governing/management; however, there was still no intention to resist power. Or in other words, although the healthcare workers chose to defy the state recommended measures, which required them to stay at home if they had symptoms of fever, myalgia, fatigue, runny nose and/or dry cough, they did not intend to resist. Thus, when obstructing and breaking the regulations, our respondents displayed intent, but not the intent to resist.The above implies that contemporary resistance practices need to be understood as products of shifting economic, political and cultural topographies of power—not least during the Covid-19 pandemic  based on information about another ” Vogt, , p. 131.The resistance we identify will also be placed in relation to, and is understood through, the context that the Covid-19 pandemic and contemporary relations of power in Sweden offered us. We suggest that neoliberal norms and a local management that utilized social hierarchies  were the context of the strong biopolitical state management that occurred due to the Covid-19 pandemic. The friction between different forms of governing must be localized and embraced to understand resistance that is situated outside the common thought of dissent.To understand the micro-study that we conducted, we also want to shed light upon the situation in many nursing homes in Sweden during the pandemic. Sweden had high death rates among elderly people who were living in long-term residential care facilities during that time—at least in the early stages of it. For example, in 2020 the mortality rate in nursing homes was 23% higher compared with the 2016–2019 average, 14% higher among the elderly with home care and 13% higher among the elderly outside elderly care  and TV and radio documentaries, as well as primary sources, such as Government Committee’s reports, opinions and (amendments to) legislation. In addition, we have carried out five in-depth interviews with healthcare staff members, three of whom were employed by the hour (often offered work by the usage of text messages) and two assistant nurses, who also worked as union officials, in retirement homes in Sweden. Of the five respondents four were self-identified women, one self-identified man and one immigrant.possible and existing forms of subversive actions. Theories on how resistance has been, as well as can be, enacted can be constructed from selected empirical accounts. Or, in the words of Robert K. Yin  closely monitored the Covid-19 situation by carrying out microbiological analyses and risk assessments while mapping the development of the outbreak; thereafter, reports were published on their homepage to be “known” by the public. Governing also took place through mapping how people moved, while simultaneously instructing people how to behave “if you are planning to travel” and when “Using public transport”.2The above indicates that, instead of favoring the use of force, governing to a large degree took place by using different “biopolitical” and “ethopolitical” strategies  general recommendation(s); the message was simply that everyone had to “discipline” themselves for the sake of others: “Nobody should take chances. Not one of us can go to work with symptoms. Young, old, rich, or poor does not matter—everyone needs to do their part”  It is good. These are resources that come in handy in a moment like this. But we also have something else in store: a reserve of human trust, solidarity, and consideration. It is from this gold reserve of human care that we now pick out the power in our society, in the moment when it is most needed.9However, not only “common sense” but also solidarity was pictured as an engine for following the national recommendations. Then Minister of Culture Amanda Lind (The Green Party), when debating culture in the Swedish parliament on 27 March 2020, stated:I think that in these political speeches it has been very much like this … You must feel solidarity with the Swedish people. You must not go to work when you are sick. We must show solidarity with each other. Everyone must stay at home.10By constructing the Swedish people as compassionate, the citizens are encouraged/required to discipline themselves; they should voluntarily wash their hands, stay at home, et cetera. Regarding this, one of our respondents said this:By ethopolitics I mean to characterize ways in which the ethos of human existence—the sentiments, moral nature or guiding beliefs of persons, groups, or institutions—have come to provide the “medium” within which the self-government of the autonomous individual can be connected up with the imperatives of good government. This strategy can be understood by what Nikolas Rose  has labeRose concludes: “If discipline individualizes and normalizes, and biopower collectivizes and socializes, ethopolitics concern itself with the self-techniques by which human beings should judge themselves and act upon themselves to make themselves better than they are” Rose, . DrawingAbove we have discussed ethopolitics as a form of state governing; however, this governing prevailed side-by-side with other forms of power during the pandemic—for example, the neoliberal management and disciplinary power that was encouraged or employed by both municipal and state actors  would like to have a permanent job. They want the security. They want to feel that they can take a mortgage and buy an apartment … They want to feel that they can take a vacation … That they can be free also during the summer… They want to be there for their families and know which weekends they must work and all that. [They do not wish] to work every single weekend for four weeks in a row, because that is the only hours you will get. It is a terrible way of life for adults, if I may say so, who have family and children. It is not dignified at all … [They] find it very difficult to get the economy together ... [T]he employer, they [also] give them less hours. If I am supposed to work from 7 am to 4 pm, a replacement is not allowed to work from 7 am to 4 pm but is only allowed to work from 7 am to 2 pm. They only get part-time jobs when they work. They have a very hard time getting up to full time if they do not do more shifts and then they have fewer days off, which also makes them more tired.14Another respondent suggested that the employees of the gig-economy:karensavdrag), which means that during each period of sickness, sick pay is subject to a payment reduction that is equivalent to 20% of one’s average weekly sick pay. This karensavdrag replaced the previous karensdag or “waiting day”, which was the name of the first day of sickness where no benefit is paid. During the coronavirus pandemic, however, the government began covering the cost of sick pay from day one in an attempt make people with symptoms stay at home. According to one of our respondents, however, this change did not impact upon the situation of the so called sms-employees, as their assignments were often for just one day: “we get new temporary workers every day, because if that temporary worker falls ill, the employer must pay compensation for him/her. (…) Therefore, they only book hourly employees one day at a time”.15The hourly employees not only get fewer hours than those on permanent contracts, but they also have problems with getting compensation if they get sick. In 2019, Sweden introduced a “qualifying deduction” . Moreover, as suggested below, during the Covid-19 pandemic, different instruments of Swedish state governing sometimes ended up interacting and creating tension with neoliberal norms and conditions of economic insecurity. In the next-coming sections, we discuss how various forms of involuntary resistance were evoked by the friction between different forms of governing. In line with Anna Tsing , p. 5, wToday there is a rich and varied scholarship that embraces the concept of resistance within the social sciences. Much of this scholarship, however, focuses on large-scale and organized forms of collective resistance  and demonstrates how resistance is often carried out through non-cooperative forms of resistance, such as demonstrations, sit-ins or riots  and does not recognize unintended or “other-intended” resistance , regardless of whether it is a covid-19 pandemic or not. Then you can only hope that it is not covid-19 … social media has also made it difficult to work in healthcare, as there has been a lot of social pressure [lately]. I am afraid that I will accidentally infect someone. It is more or less forbidden to cough, sneeze, et cetera. Many are on sick leave and the lack of staff puts pressure on the ones at work staff … That has created a lot of mental stress.27This quotation reveals how different punishments—here in the form of public shame and dislike—were sometimes distributed to those who did not follow the state recommendations. One of the sms-employees stated the following:What is described above is a situation in which healthcare employees felt monitored on social media by friends and colleagues. The control and shaping of the Swedish population also included forms of “punishment” other than the ones described above. There was, for example, a constant threat from the authorities to apply more and harder restrictions. In addition, at least four people in Sweden have been charged with going to work with an active Covid-19 infection. All of them are women who work in the care sector. For a person to be convicted of “creating danger to another”, it is required that they have acted with “gross negligence”. Until 2022 Covid-19 was, as stated above, classified as a “public health hazard” and several employees around the country lost their jobs when it had been discovered that they defied the infection control rules and had gone to work with Covid-19.28We have a microscopic few [sms-employees] who could be assistant nurses, but they want to be free and decide themselves when to work. ... Most sms-employees come from other countries, they are maybe 45–50 years old and want to get into the labor market. … Over 80% of those who work in elderly care are women.30When discussing disciplinary punishments and state governing, it is important to establish an intersectional perspective. As stated above, the Swedish healthcare system has been subject to a neoliberal restructuring where, among other things, cheaper forms of labor have been increasingly sought in order to reduce the cost of providing elderly care categorized the runny nose from “covid” to “allergy” rather than calling-in-sick. What she suggests is that competing stories around the “runny nose” gave room for different rationalities that justified presenteeism. The “rationale shopping” was made feasible due to several competing explanations around sniffling. Many of these—for example, pollen allergy, “morning runny nose” or ordinary colds—have previously been common understandings around sniffling. However, as Covid-19 spread globally, the contextual meaning of a runny nose changed . A runny nose was still a runny nose; however, the pandemic discourse that evolved now added something more to it—an additional and/or competing meaning. Still, old “truths” remained. Drawing on our interviews, the sniffling could be understood, explained or repeated as an ordinary cold, “morning runny nose”, Covid-19 or pollen allergy, due to various considerations and agendas. To some extent, the existence of different possible truths made resistance without a clear intent possible.The idea of intention, as framed in previous research, indicates that the minds of the resisters remain unpersuaded by hegemonic arguments and that subjects are free to take any action that they decide upon Butz, . In thisThe elaborated resistance can be better understood if we, as underscored by Ortner, abandon the simple opposition between “domination” and “resistance”. As Ortner argues, resisting subjects are sometimes ambivalent about what they are doing and why they are doing it Ortner, , p. 187.“Yes, now I have to go and do a corona test, because I'm worried about my symptoms”. Then it was almost the head of the unit who just said: “No, but you don't have to, do you?” Like this [laughs]. Because they want staff then. Or they just, “do you really feel sick?” I just “yeah, no, obviously I don't. But I have a stuffy nose and a runny nose. How the hell am I supposed to…? Should I hope it's not corona or not?” You know this way.While breaking state recommendations with, what could be understood as involuntary resistance, the sms-employees we interviewed did not participate in any resistance movements, and they sometimes collaborated with the local management Ortner, . In factThe involuntary resistance of our respondents was then facilitated, or even encouraged, by the local management. The resistance of the temporary employees shows that the idea of intent, in Scott’s sense, is not applicable. Rather, our respondents’ resistance was justified by existing discourses and was spurred by material conditions. It might be resistance that one does not think of as resistance and/or might think of differently later. Our respondents seemed aware that their presenteeism might be questioned. An illuminating example of this is that those who went to work sniffling, while rationalizing it as an allergy, still seemed to be aware of breaking the rules, therefore hiding it: “it was also a bit taboo. You know, you do not want to go to work having a running nose”.As displayed above, the strong biopolitical and ethopolitical rule, which emerged during the Covid-19 pandemic, took place in a society that was marked by neoliberal norms and attached modes of subjectivation. The disciplining of colleagues interacted with the state recommendations in combination with a neoliberal management of working life. As heterogeneous elements came together—neoliberal management, state politics, local management, disciplinary punishments and hierarchical norms —neoliberal norms limited the possibilities of the ethopolitical rule of the state (at least in regard to our respondents). This, we would like to propose, tells us something about how multiple forms of governing can, at times, become frictional and create unexpected forms of resistance. In this case, the resistance can be considered involuntary; while our respondents considered the recommendation of the state reasonable, their actions still undermined them. They understood that they went against prevailing recommendations of the state; thus, there was some intention. However, in their understanding, they did not really challenge the advice as they did not consider themselves to have covid . For our respondents, the reason for going to work seemed to be economic vulnerability, and their decision was supported by local managers, who at times encouraged presenteeism. Overall, intention and (un)intention entangled to form a complex mess.“Intent” is a contested concept that has divided the field of Resistance Studies for (too) long. In this paper, we have elaborated on the concept in relation to “resistance” through a micro-study of the Covid-19 situation in Sweden during 2020 and 2021. Our respondents’ accounts show that for them, multi-layered forms of power and conflicting governing strategies at different levels of society turned into a seedbed for involuntary resistance. Community and state governing, and neoliberal norms were the context of the strong disciplinary governing that occurred in the wake of the Covid-19 pandemic in Sweden. These forms of governing interacted with other relations of power, such as hierarchies that were based on, for example, age, class and sex, which together created a specific form of resistance. Thus, we would like to argue that the framing of involuntary resistance illuminates the co-existence of different forms of governing, change processes and frictional neoliberalism.The “involuntary” resistance addressed in this paper emerged from “muddled” intentions; that is, from a complex mix of both intention and non-intention. The sms-employees narrated some kind of intent but not the intent to resist power. The resistance could be seen as an effect of power(s), but was still accomplished without the aim to challenge power. In addition, the act of dissent involved some “rationale shopping”; for example, our interviews reveal how competing stories around “runny noses” created some room to maneuver. By choosing one storyline over others, the resisters took the decision to break the recommendations, which in practice meant that they refused to be called to order by the “ethopolitics” of the governing of the Swedish state.To understand how resistance sometimes “accidentally” challenges power and reverses hierarchies, every case of resistance performance should be seen as a unique case that deserves to be further interrogated, analyzed and mapped. In this, it is important to remember that “resistance is not an intrinsic quality of an act but a category of judgment about acts” Barker, , p. 178.


Every year, more than 90,000 U.S. women undergo mastectomy. More than 40% have reconstruction. Following reconstruction, most women experience persistent partial or complete numbness of the reconstructed breasts, and many experience pain. Yet, breast reconstruction procedures focus largely on esthetic outcomes with mixed impact on sensory outcomes and little attention to pain. This study examines whether and how breast sensation is important to women.N = 32, 2022).Conventional content analysis of extant qualitative data from a clinical registry , a volunteer community sample , and from a Twitter social media survey (Functions of the breast identified by women with and without cancer include breastfeeding, sexual function, and femininity. Five interrelated themes on the importance of breast sensation emerged among women with breast cancer history: sexual function, experience of partnered sex or relationship with one's sexual partner, breast embodiment, effect of breast pain on sexual function, and importance to psychological wellbeing. Women, advocates, and clinicians described a lack of patient–physician communication in this domain that exacerbates the negative impact of breast sensation loss on health and wellbeing.Breast sensation is important to women following mastectomy, yet a gap exists in patient–physician communication about the impact of mastectomy and reconstruction on breast sensory function. Lessons for physicians, scientists, and skeptics are conveyed about why the basic integrity of women's bodies matters for practice and science. Surgical interventions to preserve sensory function—including skin- and nipple-sparing procedures, nerve coaptation, and autologous flaps—are evolving rapidly.29 Research funded by the National Institutes of Health has led to new interventions to promote sexual function outcomes for prostate cancer patients. Breakthroughs in surgical technique for penile cancer  and genital trauma have enabled five penis transplants worldwide (two of which have required explantation as of this writing).30 Johns Hopkins Medicine, where a successful penis and scrotum transplant was performed in 2018, identifies several functional goals of transplant: “urination, restoration of sexual function, and restoration of the patient's sense of wholeness and self.”31In contrast, sexual function is recognized as an important patient-centered outcome of prostate cancer treatment and is routinely addressed in medical decision making and treatment planning.33 The Bionic Breast Project has been developed with extramural research support, including funding from the National Cancer Institute. Despite enthusiasm about the concept from patients and clinicians, and growing recognition of the problem of breast sensation loss in the literature, a recent proposal for federal research funding from our group received the following comment from a peer reviewer who questioned the scientific significance of the project by noting as a weakness that “it's not clear how important sensation is to patients after mastectomy.”The Bionic Breast Project joins patients; clinicians; social and biological scientists; and electrical, mechanical, and molecular engineers to preserve and restore breast function and alleviate pain using bionic technologies among mastectomy patients. This paradigm-shifting approach involves adaptation of technology that imbues a prosthetic hand with a sense of touch and has also been shown to mitigate pain.This critique touched a nerve (no pun intended) and, combined with ongoing evidence of harm resulting from breast numbness after mastectomy, was a call to bring forth new sources of evidence about the importance of breast sensation. A study was conducted to further establish whether and how breast sensation is important to mastectomy patients and others with concern for this population.Data from three extant sources were analyzed.N = 387 as of June 2022) provided written documentation of the informed consent process. The Registry was approved by the University of Chicago Institutional Review Board (IRB).All patients seen for care at the University of Chicago Program in Integrative Sexual Medicine for Women and Girls with Cancer (PRISM) since October 2008 were eligible to join a prospective research registry. All participants , with adjudication by two others . Data analysis continued until inductive thematic saturation was achieved (no new categories emerged from the data).36 More than one code could be applied to a single quote. Quotes were annotated using the convention R,X .A qualitative dataset was produced by abstraction of narrative text from clinical progress notes of 109 registrants with a history of surgical treatment for breast cancer. Research coders had no direct interaction with registrants during the data analysis phase. However, all registrants were past or current patients of S.T.L. and both D.G. and E.A. may have previously interacted with some registrants while working as clinical patient educators. Two coders  did a first-pass read of transcripts to deductively identify narrative statements (“quotes”) relating to the importance of breast sensation, including pain.N = 16) with (BC+) and without (BC−) a breast cancer history recruited by email, flyer, and social media. The primary aim of this 2019 study was to develop a measure of breast sensorisexual function.27 The hour-long interviews queried conceptual areas related to breast function and breast embodiment37 (one's feeling that their breasts belong to their body). As described above for the Registry study, these interviews were conducted with approval from the same IRB and all participants provided written documentation of informed consent.Between June and September 2019, qualitative interviews were conducted with a different group of sexually active adult women , and a detailed note taker . E.A. and D.G. may have previously interacted with some participants while working as clinical patient educators, but other researchers had no prior relationship with participants. Audiorecorded interviews were transcribed verbatim. Therefore, transcripts were not returned to participants for feedback. Transcripts were analyzed using conventional content analysis by two independent researchers  We note that T.M. was also a trained patient educator in the PRISM clinic. Analysis elicited descriptive open codes that were organized into categories capturing the key concepts.a priori thematic saturation.36 Quotes were annotated with the participant's unique ID (PXX) and breast cancer history (BC+/BC−).Data were analyzed to exemplify existing theory—informed by extant literature and 15 years of specialized clinical experience (S.T.L.)—regarding breast function to achieve In March 2022, S.T.L. tweeted the following to more than 1,400 Twitter followers: “Need help with a research question pertaining to the problem of numb breasts after #mastectomy. A skeptic says, ‘it's not clear how important sensation is to patients after mastectomy.’ What do you say?” All public responses were coded categorically using a process informed by the methods described for analysis of the PRISM Registry data. A first round of discussion and coding was conducted by T.M. and A.S. together. The codes were then reviewed by S.T.L. and iterated together with T.M. and A.S. to achieve consensus.Microsoft Excel 2016  was used to organize data and document findings for all three analyses.Relevant narrative in the medical record was identified for 29 of 109 eligible Registry patients, yielding 34 total quotes. All patients identified as women and were 29–72 years old. Most were non-Hispanic White (16/26 with race/ethnicity data) or non-Hispanic Black (7/26) and postmenopausal (19/20 with data). Eight patients had mastectomy without and 10 with reconstruction. Ten had undergone lumpectomy, two with reconstruction. Five interrelated categories indicating the importance of breast sensation emerged: importance to sexual function, including libido, arousal, and orgasm; importance to the relationship with the sex partner or the experience of partnered sex; importance for the patient's sense of breast embodiment; importance of the effects of breast pain or discomfort on the patient's sexual function and wellbeing; and importance to the patient's psychological wellbeing.In response to the physician's (S.T.L.) questions about sexual function concerns during PRISM clinic visits, patients commonly described ways that loss of breast sensation had a negative impact on sexual arousal and orgasm. One patient explained, “I used to get pleasure from the nipple and now it's just annoying. I find it actively unarousing” . Another patient recalls that her breasts and nipples were an “important erogenous zone” but now, “I have no feeling there anymore … without that stimulation, I can't get where I need to be” . A third patient described: “Here's the big thing. A lot of my arousal, most came through my nipples. I had skin-sparing surgery, but not nipple sparing because some of the cancer came into the nipple. … I can feel him [spouse] touching my breasts, it does nothing for me. I've lost my main area of arousal” .One woman presenting for care for sexual function concerns indicated that her breast sensation was never particularly important to sexual functioning. She found loss of breast sensation less distressing: “Breasts functioning in that they are there. There is not a lot of sensation. That's mostly ok. Never a critical aspect of sexual function. It's a bonus, but not critical” .Patients also commonly described ways that loss of breast sensation impacted partnered sexual interactions. For some, the partner's sexual interest in and interaction with their numb breasts was distressing: “Before that [mastectomy], they [touch to the breast and sexual arousal] were definitely connected, but now it is not. …When you don't feel something and you know someone is touching them, it's a turn-off. It's horrible because he likes my breasts. That's definitely had an effect” .This patient identified both loss of arousal and inhibition of arousal (or “turn-off”) due to a negative affective experience resulting from her partner deriving pleasure from her numb breasts. Several women articulated that their partner was not bothered by, and was still sexually interested in, their breasts despite loss of sensation. One patient said, “But they [my breasts] are really nothing to me. … He [her partner] wants to feel them, he wants to have that feeling that means so much” .The above excerpts also give evidence to the importance of breast sensation for embodiment. Several women described feeling disconnected from their breasts. For example, one patient said she felt “very apprehensive to touch the breasts, not because I'm afraid I'll hurt myself but because I don't like the way my breast feels to my hand” . Some women described a disconnect between how the breasts looked and their lack of function. One patient said, “I don't look at my breasts. They look pretty good. But they are really nothing to me … they do nothing for me” .Some women experienced both loss of pleasurable sensation and chronic pain or discomfort in the breast or chest area that interfered with sexual function and day-to-day social interactions. One patient remarked on both the physical and psychological impact of feeling pain: “I don't want it to be touched. It hurts when I hug somebody. Every time I hug someone, I'm reminded of the breast cancer” . Another patient noted that she “couldn't get past first base because [her] chest wall was so sensitive” .Less commonly elicited, but equally distressing to some patients, was the impact of lost breast sensation on their psychological wellbeing, including grief or loss. A patient recalled that when her partner touched her affected breast, “I started crying. Not because it hurt physically” . One patient with no sensation in either breast simply said, “I miss it” . Others were angry, especially those who felt that this outcome was not addressed before treatment: “Not one doctor ever talked to me about the sexual aspect of loss of my nipples. That's where most of my arousal comes from” .Of 11 participants who responded to “Describe all the things a woman's breasts do,” all identified as women, 6 had a cancer history, 6 identified as white, and 5 as African American/Black. Three interrelated functions of the breast emerged: breastfeeding, sexual behavior and function, and signaling femininity.Almost all respondents named breastfeeding as one of the breast's primary functions. As one participant phrased it, “Obviously they feed children, because that's what they're made for” .The sexual function of the breast was commonly cited. Women thought of the breasts as “part of the foreplay,”  and “pleasure zones for your partner and for yourself” . For many, their breasts were a dominant, even essential, source of arousal during partnered sex; one respondent reported that “I do have a lot of sensation in my breasts which allows me to ease into sexual activity” . Other participants described how deficits in breast function after mastectomy had impacted their sexual function. For example, one respondent noted that breast stimulation “helps you get aroused and with an orgasm, it helps a lot, or at least it did for me [before mastectomy]” . Another participant, who lost much of her breast sensation after mastectomy, wondered what kind of breast function she should describe: “My breasts? Or functioning breasts?” .Some women described their breasts as a symbol of femininity, influencing their self-image and perception by others: “Growing up I didn't like my breasts, but I've come to like them and accept them as the female part of the body. … It is a symbol of power for me, just because it distinguishes me from the males” . Another woman spoke to embodiment and the importance of breasts for femininity; “[having breasts is] just part of, I'm a woman! You know, it's a part of me!” .n = 15), physicians (n = 6), nurses (n = 2), psychologists or other PhD-trained professionals (n = 3), and others (n = 3). Some identified with more than one group. Replies were categorized as comments on the skeptic's question about whether breast sensation was important to women; effects of lost breast sensation on other symptoms, daily activities, or sexual function; patient–physician communication; and physical and psychological relief.The original post yielded 12 “likes,” 5 “retweets,” and 32 replies over 12 weeks from people who identified as having had surgical treatment for breast cancer  and even psychological relief . Others shared they had regained some or most sensation. One person who had come to accept loss of breast sensation after treatment commented, “It's really important and I wasn't warned well enough. I accept it as part of the wider loss to save my life.”“It's not clear how important sensation is to patients after mastectomy.”38 Of note, the literature on male penis reconstruction and transplant is devoid of any discussion of whether or how important penile sensation is to patients contemplating treatment after losing part or all of their penis.39–41 The universal assumption in this literature is that penile sensory and sexual function are important to men and their sexual partners.This study draws on extant data from three sources to further establish that sensation is important to patients after mastectomy. It elucidates, from the patient, advocate, and clinician perspectives, the many mechanisms through which loss of breast sensation affects health and quality of life of women following surgical treatment for breast cancer. It adds that women with and without breast cancer identify several functions of the breast, including breastfeeding, sexual function, and femininity, all of which have been unsatisfactorily addressed by most attempts at breast restoration after cancer treatment. In contrast, surgical innovation to restore the penis lost to cancer or trauma has operated from the premise that appearance, embodiment, and full function of the penis  are of very high importance to men and their partners, and are requisite for establishing procedural success.42 We also corroborate that, for women with breast cancer, breast sensation is important to quality of life, sexual function, and satisfaction with operative outcome.43–45 With a more diverse sample than prior studies (which either do not report race/ethnicity or include mostly white participants) and by adding qualitative data to evidence from close-coded surveys, we add new insight about how breast sensation is important. Loss of breast sensation can interfere with several key domains of sexual function, as well as the relationship with a partner. It was also found to diminish other domains of function, including social and daily activities, and contributed to bothersome symptoms, such as itching, lack of proprioception, and unwanted breast exposure. Although not elicited here, prior studies have documented breast burns and contusions as a result of numbness following mastectomy.9We confirm prior studies in Dutch cohorts that find breast sensation is important to women with and without breast cancer.46–50 Feelings of disembodiment can be deeply distressing, especially for sexual organs like the breasts or the penis. In fact, one Chinese man had his penis transplant removed due to his inability to accept the organ as his own and his partner's distress.52Perhaps the most important, but wholly unsurprising, finding is that loss of breast sensation caused women to feel that an essential body part no longer belonged to them. The importance of successful embodiment has been associated in the literature on amputation and prosthesis—including penile amputation and reconstruction—with improved physical and social functioning, reduced pain, and patient satisfaction.Loss of breast sensation is accepted by some women as the price to pay to be rid of cancer or for survival. Others describe feelings of grief, sorrow, distress, loss, and anger. Lack of patient–physician communication about the effects of mastectomy with reconstruction on breast sensation and the subsequent impact exacerbates negative experiences and is obviously preventable. The skeptic's question resonates with this communication gap—if physicians fail to appreciate the essential functions of the breast, they may very well overlook the importance of these functions to a woman who loses one or both of her breasts to cancer.While filling gaps in prior work, this study has limitations, including generalizability. First, just as the penile reconstruction literature assumes  the importance of penile sensation to men, so did we assume the importance of breast sensation to women in designing our studies. Data were obtained from extant data sources, rather than prospectively, and may be limited by selection bias. Last, proportions derived from qualitative data should not be interpreted as prevalence rates of the importance of breast sensation in broader populations. The functions of the breast elicited here, in addition to lactation, are a subset of all functions that might be identified by a larger, prospectively designed survey focused specifically on this question.53–57 We must approach the care and study of women with an understanding of the impacts of these biases on the health, wellbeing, and bodily integrity of women and others. Second, according to the ethical principles of autonomy and nonmalfeasance, interventions to remove, alter, or reconstruct body parts require a conversation with a patient about the full implications.58 Informed consent must include educating patients contemplating mastectomy about what to expect from treatment options, including esthetic, functional, and symptomatic sequelae. Last, before depriving a woman of ethical care or a scientist of funding, skeptics of whether a body part is important to women can easily check their bias. Simply replace the word “women” with “men” and “breast” with “penis,” as in: “It's not clear how important penis sensation is to men after penectomy.” The ridiculousness of this statement is eminently obvious and an alert to skeptics to reconsider the fairness of their clinical and scientific judgment.The skeptic's question teaches some lessons. First, evidence for gender bias in medicine and science is ample.


Restricted and repetitive behaviors and interests (RRBI) are a significant component in diagnosing autism spectrum disorder (ASD). They often pose the main challenge in day-to-day functions for children with ASD and their families. Research addressing family accommodation behaviors (FAB) in the ASD population is scarce, and associations with the characteristics of the children’s behaviors are unclear. This sequential mixed-methods study assessed the correlation between RRBI and FAB within the ASD group to deepen the understanding of parents’ subjective experiences regarding their children’s RRBI. It included a quantitative phase with a follow-up qualitative study. A total of 29 parents of children with autism (5–13 yr) completed the study questionnaires; a total of 15 also were interviewed regarding their children’s RRBI and related FAB. We used the Repetitive Behavior Scale-Revised (RBS-R) to assess RRBI, and the Family Accommodation Scale (FAS-RRB) to assess FAS. In-depth interviews from phenomenological methodology were used in the qualitative phase. We found significant positive correlations between the RRBI and FAB overall and their subscores. Qualitative research supports these findings, adding descriptive examples of the accommodations families make to address the RRBI-related challenges. The results indicate relations between RRBI and FAB and the importance of practically addressing children with autism’s RRBI and their parents’ experiences. Both affect and are affected by the children’s behaviors. Family-centered therapy places the family at the center of the therapeutic intervention; it is based on the assumption that the child develops best when the entire family’s needs are considered. Family-centered care is characterized by applying respectful attitudes toward families, sharing information that enables informed decisions, and addressing family choices and priorities by creating teamwork and an equal partnership with the entire family ,2. Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder with unique characteristics manifested in various areas, including social-communication and behavioral problems . AccordiRRBI are behaviors related to repetition, rigidity, fixation, and resistance to change . Not speThese behaviors are often grouped into two categories: (a) low-order RRBI, which include repetitive movements of body or objects and sensory-seeking behaviors, and (b) high-order RRBI, which include restricted interests and ritualized verbal and behavioral patterns. This classification usually refers to a child’s functional level in expressing a specific behavior. Low-order RRBI are usually present in younger children with developmental delays and lower cognitive abilities, and high-order RRBI in children with higher cognitive abilities and verbal skills ,9.RRBI have been described as affecting various daily functions, such as self-care, social occupations, and activities. For example, a child with autism may insist on wearing a favorite shirt every day, regardless of the season and weather ,11. The These behaviors can result in strong stigma and social rejection . They miThe professional literature offers extensive reasons and theories regarding the etiology of RRBI. Some researchers believe that organic impairments such as structural defects or brain functions may be possible factors of RRBI . In addiFAB) are strategies designed to facilitate the child in dealing with challenging situations , “You can’t touch anyone; you can’t sit down [on anyone].” And that created a lot of tension, yes. Lots of adjustments. A lot of such preventive conversations. That’s terrible. To tell your child what he should not do all day.Involvement in adaptations for a child with autism may increase arguments, fights, and tension within the home, including the entire family. S described the tension among the family members due to their accommodation behaviors:I had to come with him everywhere. To the bathroom. … We have a fridge on the balcony so he wouldn’t go out to the fridge, which is like … four meters, like, it would create a lot of tension inside the house because I can’t always come with him to the bathroom, and then I would ask his sisters, and then they would get angry, and it created a kind of something so terribly complex.The challenges that the children’s behaviors posed affected the whole family. Efforts to understand a child with autism’s needs while meeting other family members’ needs led the participants to search constantly for ways to accommodate them. The varied FAB they presented in the interviews required the parents’ adaptation to the children’s needs. L described accommodations to her 7-year-old’s clothing to deal with his propensity for masturbation: “Such masturbation he performs all the time. … We had to sew his clothes, his shirt, sew it to his pants and add a zipper at the back because it was always there”.Other FAB examples related to household members’ daily routines. R described difficulty producing a “surprise-free routine” for her 5-year-old: Every little thing can infuriate him. If the phone suddenly does not work, there is no game he could download, the neighbor turned on the elevator light before him … if it’s a light in the elevator or if it’s everything, … a computer that does not work, if I promised him something and, in the end, it was canceled. … You just can’t arrange the child’s path for him all day so that everything will go smoothly.G described the difficulty in dealing with her 12-year-old daughter’s rigidity and ritual:She needs preparation in advance. She needs preparation for everything. You cannot spontaneously say now, “Let’s go.” It doesn’t work. She needs to be guided and what is going to happen and what is the schedule. Changes. She does not accept them properly, so to speak.n = 10) of the parents reported difficulties leaving the house as a family, posing the dilemma of bringing the child with autism or giving up events altogether. M, the mother of an 8-year-old child with autism, explained the accommodation behaviors her family was forced to perform by either giving up time together or coordinating between the spouses to divide out-of-home supervision:Two-thirds . In Feldman et al.’s  study inThis study found a strong, positive, and significant relationship between RRBI frequency  and FAB occurrence . We specifically found strong correlations between higher-order RRBI, such as compulsive, ritualistic, sameness, and restricted behaviors. Higher-order RRBI are attributed to children with autism with higher cognitive and verbal abilities ,34. TheiA different explanation could be the family’s tendency to perform FAB. Possibly within families that demonstrate FAB at a high level, children develop many RRBI behaviors with a higher frequency. Parental behavior greatly influences the way psychopathologies are presented and expressed in childhood, and different parental behaviors may have an impact on the development of different behavioral patterns, including RRBI ,36.In contrast, our study revealed no correlations between low-order RRBI and FAB, although children in this study presented such behaviors. These results suggest that parents were more prone to accommodate higher-order than lower-order RRBI. Past studies suggested that the children’s levels of impairment and environmental demands might affect the FAB nature and frequency . The parents’ perceptions of their children’s behaviors might also play a role in their decisions to react with FAB. For example, past research suggested that children’s RRBI play an essential role in regulating and lowering their stress and anxiety levels ,14. ParePast studies showed that parents invest numerous efforts in FAB ,20. ResuAlthough FAB may provide immediate relief for the child and family, they sometimes present challenges: The parents’ efforts may result in parental distress ,39. Our FAB also considerably burden families in the long run because they require effort to reorganize family activities around the child’s needs . In thisIn addition to the child’s characteristics and behaviors, studies have examined the parent’s variables that may predict a high frequency of FAB, especially among families of children with anxiety disorders ,41. For The research literature presents various methods and approaches to the treatment and reduction in FAB among families of children with anxiety disorders or OCD. The main one is cognitive behavioral therapy, which focuses on strengthening the child’s and parent’s ability to deal with stressful events ,48. In aLimitations and Future Research. Several limitations of the current study should be addressed. The sample was small and relatively homogeneous. Because we recommended the participation of the one parent who was more involved in the child’s daily life, all interviewees were mothers. Family accommodations are related to norms and habits that the wider society may also influence. Thus, a larger, diverse sample  might improve our ability to investigate interrelationships between RRBI and FAB and deeply understand the FAB issue. In addition, characteristics that might affect the relationship between FAB and RRBI  were not measured or taken into account in this study. Further research with a wider, more heterogeneous sample is needed to better understand these interventions’ implications for the children’s and parents’ well-being and effectiveness in the short and long terms. This study’s findings revealed associations between RRBI and FAB. In-depth interviews further explained this relationship, shedding light on the effects of FAB on children and their families. The relationship may suggest that FAB not only respond to but also affect the children’s behaviors and the family’s quality of life.The results may have clinical implications for therapists. Given the correlations between FAB and RRBI and the hypothesis that there is a bidirectional effect of the parents’ FAB on the children’s RRBI, therapists who guide parents to adjust to encourage their child with autism’s participation should understand the differences between adjustment and FAB. This study also suggests therapists perform therapeutic interventions focused on the parents and their characteristics to reduce FAB and possibly reduce behaviors related to RRBI. Therefore, a comprehensive assessment of the parents’ characteristics, such as the presence of parental anxiety patterns, knowledge, and beliefs about the nature of RRBI of the children, degree of parental empathy, and current abilities and ways of coping, may assist in the development and accuracy of specific family-focused interventions. Among other things, they can raise awareness and educate parents about the possible consequences for FAB in the long term and help families discover alternative methods to promote coping with the challenging everyday behaviors of their child with autism, thus benefitting the children and their families.


Existential loneliness is a feeling which stems from a sense of fundamental separation from others and the world. Although commonly mentioned in the loneliness literature, there is relatively little empirical work on this construct, and existing work tends to focus on older and seriously ill individuals. The present study aimed to understand how people experience existential loneliness without specific constraints on precipitating factors like illness or age.A qualitative online survey collected data from 225 adults aged 16 to 72 years old. Participants were asked to write about their experiences of existential loneliness and how these experiences compared to non-existential loneliness. Data were analysed using reflexive thematic analysis.Of 225 participants, 51% knew the meaning of “existential loneliness” upon accessing the survey and in total, 83% had experienced existential loneliness. 93% of these participants had also experienced loneliness that was not existential in nature. 175 participants provided qualitative data regarding their experiences of existential loneliness, from which four themes were identified: Existential loneliness is (1) A deeper form of loneliness, and (2) A feeling of deep disconnection, in which (3) Cognitive evaluations and negative emotions are central elements, and (4) Stress and mental health issues are perceived as relevant factors.Existential loneliness is a deeply rooted and impactful form of loneliness which involves feelings of profound separateness. This aspect of loneliness is deserving of further attention. Future research directions are suggested. Loneliness is a distressing and painful experience which negatively impacts physical health, mental health, and wellbeing –3. AlthoExistential loneliness has been the focus of writing by scholars and practitioners from existential , humanisQualitative research on existential loneliness to date has typically focused on older , 36–39 aA comprehensive understanding of how existential loneliness is experienced across the lifespan is lacking due to the relative dearth of literature on this construct and the focus on older and seriously ill individuals in the studies which have been carried out. Various definitions of existential loneliness exist , John Krantz’s ‘Psychological Research on the Net’ web portal, researchers’ networks, posters, and emails to relevant groups (e.g. university philosophy societies). These posts briefly explained the study and provided a link to the online survey. Participants had to be over the age of 16; they did not need to be aware of the meaning of the term “existential loneliness” at the outset of the study.Decisions regarding sample size were guided by Braun and Clarke’s , p. 211 The online qualitative survey was piloted with three potential participants  and edited in line with their feedback on comprehensibility and comprehensiveness. The final survey questions are provided in Fig. Upon accessing the online survey, participants were presented with an information sheet, consent form, and six-digit code which could be used to later remove their response if they wished to withdraw. No participants requested to withdraw. Participants were then asked if they had experienced existential loneliness. If they stated yes, they were asked to provide their definition of existential loneliness. If they stated no, they were taken to the end of the survey. If they stated “I don’t know what existential loneliness is”, they were taken to a page which provided three definitions of existential loneliness from existing research . They weParticipants were then asked if they had ever experienced loneliness that was not existential in nature, with an example provided of the distress one feels when they feel like their social life or relationships are lacking see Fig. . If theyThe qualitative data analysis utilised reflexive thematic analysis, which is a flexible analytic approach in which themes are generated through iterative and reflexive engagement with the data . This meThe analysis process followed guidance from Braun and Clarke , 57. ThiMdn = 142.5).Data were collected from 225 participants. Of these, 186 stated that they had experienced existential loneliness and were therefore invited to complete the qualitative survey. Of these, ten participants answered none of the open-ended qualitative questions and one reported in the qualitative questions that they had never experienced existential loneliness, so these eleven participants were excluded from qualitative analysis. Therefore, 175 participants were included in the qualitative analysis. The qualitative responses ranged from 5 to 2,036 words total ; 129 were younger adults (16–29 years old), 40 were middle-aged adults (30–59 years old), and 6 were older adults (60 + years old). The majority identified as female , 44 (25.14%) identified as male, 10 (5.71%) identified another gender identity , and one preferred not to say. Most participants were located in the United States of America , Northern Ireland , England , Canada , and the Republic of Ireland , while a smaller number were located in Germany, Australia, Wales, France, Guatemala, Israel, the Netherlands, Panama, the Philippines, and other parts of the United Kingdom. The majority  identified themselves as White, while 19 (10.86%) identified themselves as Latino/Hispanic, 12 (6.86%) as Black, 11 (6.29%) as East Asian, and a smaller proportion as a mixed ethnicity, South Asian, Middle Eastern, another ethnicity, or preferred not to say. Most  had completed secondary school or a higher level of education. The majority were employed  and/or studying , while 6 (3.43%) were retired and 6 (3.43%) were not employed or studying.These 175 participants’ ages ranged from 16 to 72 years . Of those, 86.96% (N = 100) had experienced the feeling. 78% (N = 86) of those who did not initially know the meaning of the term “existential loneliness” also identified as having experienced it after being presented with definitions of the construct. In total, the majority of participants  had experienced existential loneliness. Almost all individuals who had experienced existential loneliness had also experienced loneliness that was not existential in nature, but 13 (6.99%) had not.Approximately half of the individuals who accessed the survey knew the meaning of the term “existential loneliness”  was a fact or a thought, but existential loneliness was generally defined as a feeling. These definitions generally aligned closely with the definitions which are available in existing literature, although a lack of purpose was more prominently mentioned by participants in the current study. This indicates that lay conceptualisations of existential loneliness are similar to those used in the academic literature and that participants were writing about experiences of the same phenomenon that we aimed to explore. A comparison of major elements of existential loneliness related in definitions given in this study and in the extant literature is given in Table “In ways there are similarties [sp] as […] with both I feel a sense of isolation but also that sense of wanting to feel wanted and needed.” – P55, 17-year-old, female), although most participants distinguished between forms of loneliness  and provided rich descriptions of their experiences.In the process of characterising existential loneliness, it is relevant to note that some participants described it as difficult to define and mentioned that it could overlap with loneliness that was not existential in nature .In the participants’ accounts, experiences of existential loneliness involved feelings of complete disconnection.“It made me feel separated entirely from society and other people. It was upsetting to realise that other people would not be able to relate to, or understand, my experiences and perceptions.” .This was described as feeling alone in the world, feeling an essential separation from other people, and in some cases as feeling disconnected from the world and from oneself. Existential loneliness appeared to constitute a feeling of essential aloneness and separation.“I felt completely alone like there was no one there that would ever love me or care about me.” .Others described this more simply as feeling separated from the people around them. People experiencing existential loneliness often felt that others did not care about them, that they were alienated from other people, and that they did not belong.“I felt like no one else had lived my life, so no one else could relate to the experiences I had.” .These experiences were often linked to being different from other people and feeling that one was not understood by others. This could be due to specific aspects of identity, to certain experiences, or to personality factors. In a broader sense, people touched on the inability to fully know or be fully known by another person, and the impossibility of being fully understood.“Felt like I was sort of outside of my body/the situation” .For some people, feelings of disconnection were so intense that they provoked derealisation.“[I]ts mostly a deeper longing for true soul connection that I experience, which I would equate more to existential loneliness.” .Several participants also noted a longing for a deeper relationship with another person.One subtheme was developed in connection with this theme:In describing experiences of existential loneliness, participants often described negative interpersonal experiences or perceptions. People described feeling inadequate or wrong.“All of this combined caused me to think why can I not be normal. I felt as though everyone was on some new kind of programming and I hadn’t received the update.” .“I felt invisible and alone” .There were also descriptions of being left out, not fitting in, and having no one to speak to. Participants described feeling invisible and unwanted, which may represent causes or symptoms of their feelings of disconnection.“debilitating” , “far worse” , and “like a punch in the gut” .“Existential loneliness feels like I’m alone in a void that only I can see and feel and it doesn’t exist or matter to others, however non-existential loneliness just makes me feel sad.” .Existential loneliness was depicted by participants as a form of loneliness which was more pervasive, deeply rooted, and impactful. This also involved descriptions of existential loneliness as a deeply bad experience which was “I think it was so overwhelming because it’s less a temporary state of being and more like an inherent part of human life. I think life is a distraction from the fact that we are all alone fundamentally (regardless of how depressing that sounds!).” .This was described in terms of feelings and, for some, a statement of fundamental separation as a fact. Some participants characterised existential loneliness as universal or inevitable.“I felt completely lost and overwhelmed, like there was no light at the end of tunnel.” .This deeper aspect of existential loneliness was also represented through descriptions of it as longer-lasting or in some cases permanent. Existential loneliness would persist, lasting days, weeks, or longer, as opposed to other forms of loneliness which were depicted as more fleeting. Indeed, some reported existential loneliness as a constant. Accordingly, experiences of existential loneliness often involved a sense of hopelessness or endlessness.“Looking For ANYTHING to be thankful for even it were as simple as air to breath [sp] or the ability to blink, see and hear…… That is how I escaped being in that position.” .Relatedly, participants described existential loneliness as difficult or impossible to resolve. It was harder to deal with than non-existential forms of loneliness, which could be eased through social connection. However, a small number of participants reported ways of managing existential loneliness through religion, positive thinking, gratitude, and shared experiences with others. When this was possible, positive outcomes such as acceptance and a better understanding of oneself were described by some participants.“I think it would be easy for non-existential loneliness to culminate over a long time into existential, which has happened to me before.” .Additionally, some participants indicated that existential loneliness coincided with experiences of loneliness that was not existential and suggested that other forms of loneliness may lead to existential loneliness when they become chronic, further indicating the characterisation of existential loneliness as a deeper form of loneliness.Two subthemes were developed as part of this theme:“The existential loneliness I feel seems to always be inside me, but it can come to the surface when I go too long to try to remedy it. Non-existential loneliness is situational and usually tied to a certain date or event.” .Alongside descriptions of existential loneliness as longer-lasting was the experience of existential loneliness as less context dependent than other forms of loneliness.“It happens randomly. I will be happy one moment and then lonely the next.” .Existential loneliness was often depicted as lacking a clear cause – it was internal or constant, rather than arising due to a specific situation.“Existential loneliness is like sitting in your room with a phone full of messages and phone calls from loved ones still feeling like you are completely alone in the world” .However, while participants described existential loneliness as less context-bound, several interpersonal contextual elements did seem to drive experiences of existential loneliness: experiencing objective isolation, lacking social support, and periods of aloneness and, conversely, periods of socialising. Nonetheless, participants stressed that existential loneliness could arise despite strong social connections.Events which precipitated mental distress were also mentioned as relevant contextual factors for existential loneliness; see theme 4 for a full discussion.“Existential loneliness stems from me feeling like I’m going through the motions of life like a robot and my life is meaningless without connection to ground me” .Existential loneliness was described as an experience in which many people reflected on meaning and purpose in life, particularly concerns about lacking meaning or purpose. This differed from other forms of loneliness, which were generally described more straightforwardly with respect to social and interpersonal relationships.“Finding religion, love , and an overall sense of purpose are essential for decreasing the power and frequency that existential loneliness can have on someone.” .In this respect, existential loneliness appeared to involve or emerge in light of wider existential concerns about one’s place and purpose in the world. Indeed, some participants remarked that finding or reaffirming their purpose in life eased feelings of existential loneliness.“I[t] typically comes about when I’m having a bad day or when I just start thinking a bit too much about life.” .As described by the participants, existential loneliness appeared to involve cognitive and emotional facets: it was commonly linked to thinking or reflecting and was regularly described as involving sadness and other negative emotions. The experience was often described in times of thought or reflection. Several participants also described existential loneliness in respect to “overthinking”.“I imagined every room having people my age enjoying warmth and company. I could see myself finally arriving at my hall and knowing no one from the foyer to my room.” .In some cases, these thoughts lingered on purpose in life, death, and the inevitability of being alone in the end. People often described feelings of insignificance alongside existential loneliness. Social comparison was another cognitive evaluation that was linked to existential loneliness, with descriptions of thoughts about being less connected or socially active than others.“It was just sadness and frustration feeling alone, in a crowd of people.” .Negative emotions also featured in descriptions of existential loneliness. Existential loneliness was described as involving sadness and in some cases fear, dread, anger, and frustration.“I just remember the fear of wondering will I always feel this empty inside and if one would be there for me or with me.” .Emptiness also characterised experiences of existential loneliness.“I thought it was something more specifically triggered by my anxiety or depression.” .Mental health issues, stress, and trauma appeared to be relevant to the experience of existential loneliness for participants. Participants regularly described feeling existentially lonely during times of mental ill health and mentioned mental health issues in discussing their experiences.“I have noticed it occurs when I go through some sort of prolonged stress in my life.” .Stress was also described as a driver of existential loneliness. Participants felt existentially lonely in times of stress, after difficult days or life periods, and following life transitions which may constitute stressful events.“They can be triggered by periods of my life when I’m struggling with trauma of past experiences” .Additionally, traumatic life events and experiences of abuse were described as pertinent to existential loneliness. These included abusive relationships, assault, childhood neglect and maltreatment, and unspecified traumatic experiences.“Now I look back on my young self and feel sad for her, but would like to tell her that it will be all right!” .In some cases, periods of generally strong emotion were described as precipitating existential loneliness. This may be linked to descriptions by a small number of participants that existential loneliness was a feeling that was specific to their adolescence or early adulthood.This is the first research, to our knowledge, which specifically explores lived experiences of existential loneliness without constraints on sample characteristics like age group or health. Experiences of existential loneliness in people from 16 to 72 years old were investigated via an online qualitative survey. Additionally, this research sheds light on knowledge, prevalence, and definitions of existential loneliness using data from 225 adults. While these individuals were recruited to a study on existential loneliness and may therefore have a higher likelihood of knowing the term, just over half (51%) initially knew what existential loneliness was and 83% of all participants had experienced the feeling. The majority of these individuals had also experienced other forms of loneliness but 7% had experienced only existential loneliness. Data from 175 individuals with lived experiences of existential loneliness characterised it as (1) a deeper form of loneliness, and (2) a feeling of deep disconnection, in which (3) cognitive evaluations and negative emotions are central elements, and (4) stress and mental health issues are perceived as relevant factors.a negatively valent feeling of profound aloneness and separation from other people. Attempts to encapsulate the meaning of a construct may inevitably objectify and simplify it [This study aimed to ascertain how people describe their experiences of existential loneliness and found that it was described as a deeper feeling of loneliness involving a sense of profound disconnection from other people, as well as in some cases from the world and from oneself. This study strengthens the conceptualisation of existential loneliness by adding empirical evidence of how individuals define and describe the construct. This is important given the lack of conceptual clarity regarding existential loneliness  and the plify it , but we Existential loneliness was described as worse or more debilitating than other loneliness experiences, indicating the importance of considering this subgroup of experiences and their potential impact on wellbeing. Indeed, these experiences were described as involving negative emotional and cognitive characteristics such as sadness, dread, emptiness, and overthinking. This expands on previous research with older adults which indicates feelings of fear, guilt, and questioning life choices , 38, 39.This depth was also related to the perception of existential loneliness as longer-lasting, harder to resolve, and in some cases constant. This is concerning given that longer-lasting or recurring experiences of loneliness are associated with poorer health and mortality outcomes , 63. WhiThis research provides support for a multidimensional conceptualisation of loneliness with existential loneliness as one dimension or type. While various research conceptualises loneliness as including social, emotional, and existential dimensions , 14, 17,Participants described existential loneliness as deeper, longer-lasting, harder to resolve, and less context-bound than other loneliness experiences. However, it did appear that existential loneliness is a recognisable dimension of loneliness, including key aspects of loneliness that have been outlined previously: it is generally aversive, labelled as loneliness by individuals experiencing it, can be impacted by social relationships, is associated with poor mental health, and is one of multiple forms of loneliness . MoreoveRelatedly, while definitions stressed that existential loneliness could occur despite the presence of others, it was clear that social relationships played an important role. Existential loneliness was described as less context-bound, persisting or arising without an obvious cause. However, in describing their experiences, participants often described times of objective isolation and aloneness. These elements indicate that existential loneliness is perceived as less tied to objective social network characteristics but is nonetheless impacted by social activity. However, it is not inherently linked to social isolation, as participants also described existential loneliness after periods of socialising. This was perhaps linked to the sense that others could not understand them and that they were separate despite the presence of objective social contact. Quantitative research suggests that having a smaller social network and not living with a partner each predict existential loneliness, although it reports inconsistent findings around having daily contact with one’s social network , 18. SimExistential loneliness was experienced as constant by some participants, but many described it as a regularly occurring experience, highlighting its transience for some individuals. Existing loneliness research emphasises the role of prolonged loneliness on outcomes like mortality and mental health , 63. ForAdditionally, in a sample which included individuals from 16 to 72 years old, experiences of existential loneliness were described by a small proportion of individuals as occurring particularly during adolescence and young adulthood. Indeed, existential loneliness has been suggested to emerge in adolescence  and has Although the findings of this research extend our understanding of the lived experience of existential loneliness across the lifespan, there are a number of limitations. While the use of online methods represents a novel and effective way to collect qualitative data, it excludes individuals without internet access or proficiency, who tend to comprise groups impacted by other sources of social inequality  and may In summary, our results suggest that existential loneliness is a deep and pervasive form of loneliness involving feelings of deep disconnection. Reflection, overthinking, and negative emotions appear to play a role in these experiences, as do periods of stress, trauma, and poor mental health. A portion of individuals who had experienced existential loneliness had never experienced a non-existential form of loneliness, indicating that this represents a subjectively separable loneliness experience. This aspect of loneliness is deserving of further attention, which was specifically indicated by comments from several participants. Future research, policy, and practice around loneliness should take into account this deeply impactful but often overlooked dimension to improve our understanding of loneliness and inform supports for people experiencing loneliness.


To investigate and describe the process of using experience-based co-design (EBCD) to develop mobile/tablet applications to support a person-centred and empowering stroke rehabilitation.Two cross-sectoral stroke rehabilitation settings in Denmark comprising six rehabilitation units.Stroke survivors (n = 23), significant others (n = 18), occupational therapists (n = 12), physiotherapists (n = 9), representative of a patient organization (n = 1), application developers (n = 3) and researchers (n = 2).A structured, facilitated EBCD approach comprising six stages was used to co-design a service that aimed to address the priorities and needs of all relevant end-users. Data were collected by interviews, participant observations, notes on “flip sheets” and written feedback on the content in the apps and on the instruction pages. Data were analyzed descriptively and with a constructivist grounded theory analysis.The content in the application solutions “Mit Sygehus” and “Genoptræn.dk” were co-designed to support the needs identified by all end-users. Relevant evidence-based knowledge, person-centred exercises and guidelines using video recordings were the most important among the developed content in the applications to support person-centred and empowering stroke rehabilitation. Furthermore, easy, and seamless communication were considered important.EBCD facilitated the development of content in the applications to support a person-centred and empowering stroke rehabilitation. Participants experienced that their contribution was considered important and valued.The online version contains supplementary material available at 10.1186/s40900-023-00472-z. Many app-based solutions exist to support stroke rehabilitation; however, stroke survivors and significant others are seldom involved in the design of these solutions, which often reduces the uptake in clinical setting.By involving stroke survivors, significant others, therapists from diverse rehabilitation settings, patient organizations, app-designers, and researchers, we co-designed the content in two app-solutions to support a person-centred and empowering stroke rehabilitation, based on the needs and wishes of all stakeholders. Stroke survivors and significant others experienced that their voices were heard throughout the co-design process, and that their contribution was considered important and valued.The online version contains supplementary material available at 10.1186/s40900-023-00472-z. Relevant content of applications to support a person-centred and empowering stroke rehabilitation can be identified and developed using EBCD.In depth understanding of stroke survivors, significant others and therapists needs and perspectives are valuable and important in an EBCD process to promote development of new useable solutions.Stroke survivors, significant others and therapists perceived that participation in an EBCD process and sharing experiences were valuable.Stroke is recognized as a major cause of disability worldwide  and is oNonetheless, studies show that stroke survivors, significant others, occupational therapists (OTs) and physiotherapists (PTs) working in stroke rehabilitation often experience challenges related to cross-sectoral information- and communication, and gaining an overview of the stroke rehabilitation process and call for a more person-centred and tailored stroke rehabilitation , 13, 14.There is a need to involve end-users in the development of content in the app solutions. “Mit Sygehus”  is a knowledge-based and safe app solution implemented in all hospitals in the southern region of Denmark. “Mit Sygehus” is currently implemented in over 300 diagnoses in several departments  . The exiStroke survivors represent a heterogeneous group and often have complex needs for person-centred rehabilitation processes. Therefore, stroke survivors, significant others, therapists, app developers and researchers all need to be involved in a co-design process using some of the modules in “Mit Sygehus” and “Genoptræn.dk” and in developing new functions to match the needs of the end-users.Patient-involvement to improve health care has been applied since 1993 , and expEBCD involves a structured, facilitated two-phased process that comprises six stages . Participants in need of rehabilitation in all rehabilitation settings most often have more complex difficulties  and need individualized and intensive interdisciplinary rehabilitation delivered in acute and subacute stroke units, before they can continue their rehabilitation in the municipalities . The rehThe head therapist of each rehabilitation setting identified two therapists (one OT and one PT) who voluntarily agreed to participate in focus group interviews in this stage. Stroke survivors living at home who had just ended their rehabilitation process throughout all rehabilitation settings  and significant others  were identified by the municipal therapists to participate in interviews in this stage. The inclusion criteria for stroke survivors were (a) ability to understand and answer interview questions and (b) experience of ICT before and after stroke. For therapists, criteria were that they should (a) work in one of the stroke rehabilitation settings, (b) as either a PT or OT.To capture experiences in relation to the stroke rehabilitation process, unmet needs, and the integration of ICT as part of the rehabilitation process and in everyday life, individual or focus group interviews were held with stroke survivors (n = 18), significant others (n = 13), and therapists (n = 9) from different settings of the Danish stroke rehabilitation process. Stroke survivors and significant others were interviewed 6–12 months post-stroke. Analysis of the transcribed interviews was performed using a constructivist grounded theory (GT) approach comprising open and focused coding, constant comparative method and theoretical sensitivity .Additionally, prior to stage 4, non-participant and participant observations were performed by the first author in five of the six stroke rehabilitation settings included in this study for a total of five full days. The observations had several purposes and benefits: (1) as an “outsider” in all rehabilitation settings, the obvious benefit was that relations and connections were made with all participating therapists, (2) therapists used the opportunity to ask more about the project and get a greater insight to the purpose of the next stage of the research process, and (3) observations supported and contributed to the identified “touchpoints”. The municipality in Jutland agreed to participate in this study just before stage 4 of the EBCD process, and therefore there was not time enough to perform observations in this municipality.Insight to similarities and differences in local organizational processes, context, interventions, and interactions among therapists, stroke survivors and significant others was valuable knowledge.For example, knowledge regarding the short hospitalization and the number of therapists involved in the stroke survivors’ rehabilitation process made it clear that especially in acute rehabilitation settings continuity was difficult to achieve, which may challenge the implementation of the apps. The insights from the observations were also used to facilitate discussions in the workshops, regarding which apps and which content that would fit the different settings.The results from the interviews have been reported elsewhere , 6, 13. A cross-analysis was furthermore performed by the first author (and discussed with the last author), using a constructivist GT analysis to find “emotional touchpoints” across interviews to inform stage 4. The purpose of a cross-analysis was to make sure to bring participants’ experiences and voices to the next research stage and to transform these into actions.Purpose The purpose of the first workshops was to generate concrete input on the content of each module of the apps, to meet the needs of all participants and to prioritize the modules. Additionally, to understand which mechanisms in stroke rehabilitation that were perceived important by the stakeholders to support empowerment and how participating in the EBCD process was perceived.The workshops were planned and led by the first and last author in the spring of 2021 and took place in the Region of Southern Denmark .Participants The head therapists (mentioned in stage 1) identified one OT and one PT from each rehabilitation setting to participate in the workshops. Therapists from the municipalities identified stroke survivors living at home that had either recently terminated or were about to terminate their rehabilitation process and had received rehabilitation in all rehabilitation settings  and a significant other to participate in the workshops. In the Jutland workshop, 14 participated and 11 on Funen Insight to what exercises and the stroke survivors’ abilities before arriving here Relevant information may facilitate coping One stroke survivor furthermore pointed out that exercise therapy through video recordings should be available also after rehabilitation has ended in the municipality to continuously support adherence. Additionally, a PT suggested that providing relevant person-centred information through an app could support coping with the new situation stroke survivors and significant others find themselves in:Each end-user also graded each module to be: (1) not important, (2) important, or (3) very important after working on each station  when a patient transfer between rehabilitation settings, is important to experience empowerment. Sufficient knowledge about stroke and the rehabilitation plan, active involvement and greater overview of own rehabilitation, and skills to participate in valued activities in everyday life were also mentioned as important mechanisms. Additionally, most therapists wrote elaborating sentences, stating that they considered individualizing the rehabilitation to the needs of stroke survivors and involving them would be empowering. Participants were also asked to give written feedback on participating in the workshop, and all participants valued it as a great experience. Therapists found it rewarding to get an insight to greater part of the rehabilitation process from the perspectives of stroke survivors and significant others, and to discuss the rehabilitation content with colleagues in other rehabilitation settings.It has been rewarding to get knowledge about the experiences from the patient and significant other related to the entire rehabilitation process and to have the opportunity to discuss this with cross-sectoral colleagues I was surprised to see the many opportunities in the apps, and I felt that the others listened to what I said One PT even suggested that more stroke survivors and significant others could have been included to get more perspectives. Stroke survivors and significant others were positively surprised about the opportunities in the apps, and on how their experiences and opinions were valued in the workshops. Also, they appreciated the opportunity to refresh their rehabilitation experiences.Data analysis from participants’ inputs on “flip-sheets”, and their prioritization, facilitated the discussion on how to proceed to the next stage of EBCD.In the workshops all participants’ experiences and views were valued by each other. Bearing in mind that both researchers (respectively trained PT and OT) had not been working in stroke rehabilitation settings for several years, open-ended and elaborating questions during facilitation were used. Questions from the therapists and/or the two facilitators (researchers), such as: “what content would have supported you in this module?”, “would you use this module?” and “if we need to learn from this, what would you suggest be done differently” made it possible to show sincere interest in making stroke rehabilitation better for participants and supported their active engagement. Also, being paired with a therapist they knew had a positive effect on sharing their experiences.To make sure that participants discussed all the modules in both sessions within the time they were given, more facilitation was provided in the workshop on Jutland. Since stroke survivors expressed that attending the workshop for 2 h were cognitively fatiguing, extending the time of the workshops was not an option. Prioritizing the modules was less strenuous than anticipated. Despite different perspectives and experiences participants co-constructed their prioritization of each module. For example, if a stroke survivor initially scored a module “not important”, and the significant other explained the reason for a higher prioritization, they could agree on either disagreeing or changing one of the scores when receiving insights to new perspectives. These argumentations between all participants, showed that there existed an open, equal, and respectful collaboration between participants.Small co-design groups worked on the most relevant modules prior to the second workshop.Based on participants’ joint priorities, the first author initially worked with the two modules that were prioritized the highest, i.e., the “knowledge” module and “training” module. Relevant evidence-based information was added into “Mit Sygehus” using a “test patient”. Then, access to the app was shared with health professionals from two different sub-acute stroke units, given that longer duration in this rehabilitation setting may give the stroke survivors the time to learn how to use the app. One OT, two PTs, one head therapist, one physician, one speech therapist and one representative from the patient organization “Hjerneskadeforeningen”   together with two OTs and two PTs. The purpose was to test if the recording function was easy to use for the therapists, to assess the quality of the recordings made and to assess if the time needed to upload the recordings to the patient’s app was acceptable. Both tests revealed the need for smaller adjustments; for example, the duration of the recorded videos was made visible, and all engaged therapists had access to the stroke survivors’ “training” module, to be able to access assigned exercises and adjust content according to current needs of the patient . The app developers and the first author worked with the feedback prior to the second workshop in stage 6. Furthermore, written instructions on how to download the apps “Mit Sygehus” and “Genoptræn.dk”, as well as how to turn on a “read-aloud” function on the mobile phone or tablet were developed, prior to the second workshop.Step 1 and 2 in stage 5 of the EBCD showed to be valuable for bringing more useable app solutions to the next stage. Especially, the need for written instruction on how to download and use the apps were valuable input to make implementation more successful.The last stage of the EBCD process was held as part of the second workshop to recognize the achievements of the co-design process and the participants taking part , 37 by iPurpose The program and purpose for the workshop were presented, which was to test all modules in “Mit Sygehus” using participants’ own mobile phones/tablets and to give feedback on the written instructions to use the app-solutions. For that reason, this workshop had a more practical hands-on focus than the first workshop.Method The second 2-h workshop was planned and led by the first and last author and carried out with participants in Jutland (n = 10) and Funen (n = 9). Additionally, an online workshop was held with two therapists due to high workload and COVID-19-related isolation  and “This function is really great and smart, I would have liked this in my rehabilitation” , also showed how the participants were actively engaged throughout the workshops.In the second workshops all participants’ experiences and views were valued by each other. Questions from the therapists, the app developers or the two facilitators (researchers), such as: “What do you think about this module?”, “Could this module have been of importance in your rehabilitation process?” and “Would you use this function?” supported participants’ active engagement. Statements such as: In this study end-users were involved throughout the process of developing the content in two app solutions to enable a person-centred and empowering stroke rehabilitation. In the development process, the participants prioritized the “knowledge” module and “training” module as of greatest importance. Tailored app solutions to meet end users’ needs and support stroke survivors’ deficits were also found important elsewhere . The neeStroke-related deficits are both complex and heterogeneous . The “trThe reminder function in “Mit Sygehus” was valued important/very important by seven participants in our study. This potentially empowers stroke survivors and relieve strain on significant others. The reminder function to complete exercises or attend appointments was also valued important in another study . AlthougSeveral studies have shown that a majority of stroke survivors have positive attitudes towards including ICT and app solutions in the rehabilitation process and everyday life  , 49–51. it was valuable to receive different perspectives” , “it has been rewarding to refresh the rehabilitation process” (significant other) and “I felt heard” (stroke survivor) supported that this development process was associated with positive experiences, including learning together and a feeling of being listened to, similar to findings in another study [This study showed that it was possible to use a structured EBCD approach to develop the content in two app solutions to support person-centred stroke rehabilitation . Despite knowledge on unequal power dynamics in co-production designs , 53, staer study . Sincereer study . Accompler study . The reser study . Anotherer study .We learned that facilitation is important to maintain momentum during the workshops’ different stages, actions and activities, which is supported in previous studies , 38. TheThe engagement of end-users throughout the process of developing the content in the two app-solutions to support stroke rehabilitation and empowerment is a strength of this study. One known limitation of EBCD is that it is time-consuming for both end-users and researchers. Furthermore, end-users may be heterogeneous and experience a lack of consensus , 55. HowUsing a structured and facilitated six-stages EBCD approach supported the development of the content in two app solutions “Mit Sygehus” and “Genoptræn.dk” to support a person-centred and empowering stroke rehabilitation. Using open-ended questions, pairing stroke survivors and significant others with a therapist they knew, and ongoing facilitation during workshops, showed to have a positive impact on participants’ sharing, engaging, learning, and collaboration in the EBCD approach. Using an EBCD approach may ultimately also support the subsequent implementation.Additional file 1. The GRIPP2 reporting checklist on patient and public involvement in research.