The development of harm reduction has been limited in many areas of Sweden. This study aims to understand the implications that this has for the life circumstances and risk management of people who use drugs in areas of low access.Eleven qualitative, semi-structured interviews were undertaken with people who use drugs in a small urban centre with no needle and syringe exchange program (NSP) or Housing First policy.Participants reported many solutions to lack of NSP, including travel to an external NSP, creating bridging distribution networks, stealing, borrowing, reusing, ordering online, and smuggling injection equipment. They were at risk of having their equipment confiscated by police. Participants were mostly homeless, and to address exclusion from housing services, were forced to frequently find new temporary solutions, sheltering themselves in public places, with friends, in cars, among others. Participants felt the lack of services reflected stigmatized notions of drug use and heightened their exclusion from general society. For example, they avoided accessing other health care services for fear of discrimination. These issues caused high levels of stress and anxiety, in addition to serious risk for many somatic and psychological health conditions, including HIV and HCV transmission.Lack of harm reduction services placed a great burden on study participants to develop strategies due to gaps in official programming. It also contributes to a vicious cycle of exclusion from services. The implementation of such evidence-based programs will reduce this burden, as well as provide the indirect, symbolic effect of inclusion. The use of illicit drugs is associated with an increased risk of a number of intersecting health , 2, psycSweden has been widely noted to have a restrictive, deterrence-based drug policy, influenced by a “zero tolerance” approach, and an aim to have a “drug-free society”, stemming from the early 1980s . Policy Sweden operates a universal healthcare system, which is mostly free at the point of access.Where offered, the practice of NSP in Sweden, has a specific, rigid characterization, as described by Alanko-Blomé et al. . NSP areThe recent improvements in the breadth of NSP coverage also reflect other recent positive changes in the Swedish harm reduction landscape. However, these changes vary substantially on a regional and municipal level. For example, the Skåne region, recently improved access to opioid substitution therapy, which has, until recently, been characterized by a high-threshold model. This involved long waiting lists, with strict criteria regarding an extensive documented history of substance use, regular urine drug testing with expulsion or suspension upon a positive test, high age limits, and limited personal agency/preference of the service users. Some regions have undergone reforms in recent years, which have led to increases in access and patient numbers , as wellBroader harm reduction programming, such as Housing First policies, is also unevenly implemented in Sweden. The predominant model to address homelessness in Sweden can be referred to as a “staircase” or “treatment first” model . This moHousing First has been promoted by the Swedish Association of Municipalities and Regions (Sveriges Kommuner och Regioner)  and is iAdditionally, take-home naloxone (THN) has recently been made available, but has restrictive access criteria. Since 2017, it is only available to individuals who are themselves deemed to be at risk of an opioid overdose, by prescription . FriendsWhile Sweden continues to move in the direction of harm reduction, some regions and municipalities continue to lag far behind due to the influence of the zero-tolerance approach. There are a number of different ways to operationalize what “low” harm reduction may be. In this case, I have chosen the lack of two programs—NSP, and a Housing First policy—as the primary criteria. These can be seen to encapsulate both a “direct” and “indirect” harm reduction approach.Despite recommendation by the Swedish Public Health Agency (Folkhälsomyndigheten)  and NatiAdditionally, while some of the municipalities in this region do have a Housing First policy, the particular city in focus lacks such a program, meaning that individuals who are currently using drugs are excluded from accessing government housing programs. Knutagård and Kristiansen  have sugOther well-evidenced interventions, such as opioid-substitution therapy, are provided in a limited fashion, in the region, with very few clinics and no choice or agency over care provider from clients. Despite that Sweden in fact was one of the first countries in the world to provide methadone maintenance therapy (1966), proliferation across Sweden was slow, and this region did not begin such provision until several decades later . As statPlace is an important determinant of health –45, and Studies on regional-level variations or deficiencies in harm reduction provision have taken place in settings such as Canada and the United States. These are often characterized by the urban/rural divide and low population density as the primary factors behind lack of service provision , 52–56. . It asks the question: what does it mean to people who use drugs to have low access to harm reduction measures, in terms of their lives, health, risks, and social exclusion, and what strategies do they employ to contend with this?The purpose of this study is to investigate the life situation, risk exposure, and risk management for people who use drugs who live in an urban area of a region with low access to harm reductionA qualitative study was carried out, consisting of semi-structured interviews. The primary recruitment target for the current study was people with an extended history of substance use, with a focus on people who inject drugs. However, one individual with a history of non-injection substance use was also included, due to their history of engagement in harm reduction programs. Recruitment took place in a small but urban area in a specified region of “low” harm reduction service coverage, as described above.Interviews were conducted over the phone or on Microsoft Teams, between January and March 2021. Due to COVID-19-related complications, a convenience sampling method was adopted. I was unable to travel to recruit for this study in person. Instead, I came into contact with individuals (henceforth referred to as “recruitment partners”) who worked at two organizations locally whose services were primarily aimed at people who use drugs. One organization provided overnight shelter and meals, and the other provided treatment for substance use. I provided them an information sheet digitally, and these recruitment partners assisted me in advertising and recruiting for this study. At one service, I was given the phone numbers of individuals who indicated their interest in participating, with whom I conducted a phone interview at their convenience. At the other service, the recruitment partners set up video calls in their office. The limitations of this recruitment strategy are addressed in a later section.The interview guide was designed to explore participants’ accounts, key topics included: perceptions of Swedish and local drug policy and its impact on them as individuals, injecting equipment access and use, risk behaviours, experiences of accessing other harm reduction and health services, how lack of access to certain services is dealt with, as well as perceived health and social care needs. Structured questions, with relation to sample characteristics and life circumstances, such as housing and income, and information on history of drug use, were also asked.In total, 11 semi-structured interviews were conducted, ranging from 21 to 73 min in length (mean duration 49 min). Interviews were recorded with the permission of participants. Participants chose which language (English or Swedish) they preferred to be interviewed in. Interviews were transcribed verbatim. Completed transcripts were proofread and checked for accuracy. Data coding took place in the original language of the interview, and I translated excerpts used for display in the current report. These excerpts were checked for accuracy by two bilingually fluent individuals.Thematic analysis, as described by Braun & Clarke , was choSeveral authors have critiqued individual behavioural orientations to reducing drug-related harm –65. ManyThe project on which the current study is based was approved by the Swedish Ethical Review Authority (Dnr 2019-06509). All participants gave their informed consent to participate. All study procedures complied with relevant laws and institutional ethical guidelines. Given the nature of the topics involved, extreme caution was taken regarding exact names, locations, and other identifying personal details when both interviewing and transcribing. Any such specifying personal information was removed from the final transcribed product, in order to ensure confidentiality. Participants were remunerated with a 200SEK gift card for their time.Eleven individuals took part in this study, of which ten were male and one was female. The age range was 31–55 years, with an average of 43 years. All but one had injected drugs. Most (eight of 11) had ongoing daily or near-daily injection use. The remaining three had a history of substance use and were linked to the recruiting organizations, as above, treatment for their substance use or a shelter and meal program, and thus were knowledgeable about harm reduction interventions. Ten of 11 reported at least a decade of substance use, and eight reported use beginning in teenage years, or earlier. The primary drug of choice was amphetamines, followed by heroin and other opioids, and benzodiazepines. Alcohol and cannabis use were also reported. Four of 11 reported current polysubstance use. Seven were homeless or unstably housed. One participant was regularly employed, the rest reported a mixture of income generation from state pension, income assistance and/or disability payments, casual employment, begging or busking, and criminal activities.In this section, I present the two overarching, interrelated themes developed through the process of analysis: how individuals in the study addressed their needs in the face of lack of access to harm reduction services, and the health, psychological, and social consequences of this lack of access. These themes are first presented on the direct level, reporting NSP and Housing First individually, followed by presentation of the broader-level consequences and implications of the absence of services.“And then we gather [the used injection equipment] all together. I think I left a hundred syringes and needles that I had at home in a box…And those at the syringe exchange program, they know what situation we’re in up here. So they have been nice… always provided extra tools as well. And I think that is- it makes me really happy”. (Participant 8)“Yes…it’s far. I live in [town], yes but, it’s a long way there. So it takes a while. But it’s going well, they have nice staff. You are treated well, you’re just anyone. They aren’t like ‘Oh, an addict!’” (Participant 7)The participant population as a whole was made up of individuals with a very high level of consistent need of sterile injection equipment—as noted, most were injecting daily or near daily—which was not being met by formal solutions in their immediate physical environment. They reported that their current city was their home, where their families and social networks were, where they were connected to other services, so, for most, permanent movement to a city with better service access was not an ideal option. They reported a number of different ways in which they got around the lack of access to care in their region. Almost all noted that they had at some point travelled to another region of the country, approximately 100 km away in each direction, to collect a large number of syringes and needles at a formal NSP:“How soft and welcoming they are and what service they stand for … it’s beautiful.” (Participant 6)Despite the effort to travel there (some participants noted doing so on a weekly basis), several participants highlighted the additional, psychosocial impacts of such services, further to receiving sterile injection equipment. For example, when discussing the external NSP and the staff there, another participant remarked:“I have many of my friends, or yes, acquaintances…they do not think because they are addicted. They don’t care if they’ve used a needle for three or four weeks then…. I just – ‘What the hell, why didn’t you call me? You know I’m sitting on my tools. How hard is it to call me and ask me, do you have any tools? Because you know I’ll say yes. … Yes, come and pick me up then. Replace your old ones that you have, so I can take them. So you can take new ones from me instead.” (Participant 6)“There are many who do not dare to go there [the external NSP], or who cannot. And then I think they have as much right as I do, so then I go there and pick them up for us… I get it for free, they get it for free … You should not have to pay to get well, or stay healthy.” (Participant 7)However, not everyone was able to consistently visit an external NSP. Instead, they reported gaining access to equipment “in lots of different ways. From friends, maybe in a burglary… at the veterinary clinic and such. I can order them online” (Participant 4). Among other strategies reported by participants, one reported accessing the hospital ER in hopes that a member of staff would give them spare syringes, one reported fashioning injection equipment out of household items, and a number reported smuggling them from other countries where they are more easily accessible, such as Norway. Another commonly stated solution was secondary syringe and needle distribution, that is, working together amongst a small network to distribute legally obtained syringes to each other. Participants reported both giving and receiving this equipment, either for free or in exchange for drugs, the below accounts demonstrating the concern these individuals have for access in their wider network:This sort of community cooperation was key in maintaining their health and wellbeing, and was found both for syringe distribution, as well as finding places to sleep and inject together. In this case, their social environments functioned as a manner to mitigate risks at the micro-level. Many noted the importance to them of ensuring that people in their network were using sterile equipment, as “we addicts have a special belonging to each other. We actually take extra care of each other a lot” (Participant 6). However, while this may reduce the hindrance of travel and time for some, it may increase the burden for others, placing them into a sort of informal, uncompensated provider role. It also may lead to inconsistency in equipment access.“[If there was a NSP in my city], I wouldn’t have to go so damn far, spend a whole day in another city, which I don’t even like… And then yes, more children, grandchildren I could spend my time with. So it’s a lot. So I would get a lot of time for other things.” (Participant 7)Despite their efforts, participants faced a number of challenges to consistently accessing new, sterile injection equipment. For those who did report going over distances to access an external NSP, personal compromises were made, for example, noting:The hidden costs of health risk management included travel time, money for transportation, general discomfort in a different setting, and lost time with loved ones. Compromises were being made between accessing the NSP and other important priorities, including important social connections with family.“I have to use the same syringes for like, well, at least 5 days … like 15 times, it’s no problem … Some people are going on travels to [town with NSP]. But I’m not in that capable to go on busses or trains or like that.” (Participant 3)Unsurprisingly, a primary consequence of lack of NSP and other low threshold services was the extensive reuse of injection equipment, sharing with others, and the acquisition of used injection equipment. One participant explained:(Participant 9) “… And now I order or I get from others.”(Interviewer) “Yeah so you always get clean ones?”(Participant 9) “Not always.”(Interviewer) “… When you get them from other people do you pay for them? Or do you they give them for free?”(Participant 9) “No [I don’t] pay for them, I think we pay enough to chance if you’re going to get HIV or something else just by using it.”Another participant’s comments illustrated the issues with insecure access and relying on others for injection equipment:Thus, relating to the dimension of the physical environment, the geographic impediment to access has clear and important implications on engagement in risk behaviours for this population. This has important impacts on health outcomes – including blood-borne viruses such as HCV, for which Sweden provides free treatment – which then “goes around and around like a hamster wheel” (Participant 3) due to ongoing lack of sterile equipment access leading to repeated HCV reinfection.As noted, this area offered a “treatment first” model of housing and, accordingly, people who use drugs were excluded from housing programs. Participants reported a number of strategies in which they addressed this themselves. Most were homeless or unstably housed, and found more or less temporary housing through shelters or by friends and family. Others reported solutions such as “sleeping in my car, and a storage unit” (Participant 5). For those who had apartments, any ongoing substance use meant that “it hangs by a thread whether I can keep it or not” (Participant 8).“So then I have been at the train station until half past two… Then they close there, then I was out walking in town then. And I have a pretty heavy pack … just because I never know what’s coming. So I probably have a 50 kg pack, which I go and carry. So it becomes a little hard there to carry… But it will be like carrying on a home as well. But yes, I went from there down to the town, the public toilet, so we stood in a public toilet … And there we still stood until five o’clock this morning, approximately. Because then we knew that by then the train station had opened, they open at a quarter past four… So you could go there again then…until eight, before I came here.” (Participant 6)Due to the lack of formal solutions, they reported moving frequently, often faced with short-term solutions, unable to settle in any one place. Those who were actively homeless in particular faced a nightly struggle. One participant’s description of their everyday existence exemplified this effort:Similarly to how they addressed lack of NSP, harnessing community contacts was one strategy to facilitate short- or long-term housing. Here again we can see how micro-level social environments can reduce harms. However, it also may lead to issues for those friends and family who must provide space for them, seen in an example by a participant who was asked to leave housing which was being provided by a friend because “I started with the amphetamine. And then people came in, and he [the friend providing housing] did not really want any people there running around, he wanted peace and quiet. And it ended up being a lot of running around. And so, I lost that one too” (Participant 5). This illustrates the tension between wanting to assist a friend, and the issues with trying to deal with some of the lifestyle factors surrounding substance use.The further stress that this instability and patchwork of informal strategies causes may exacerbate the health and social issues related to both substance use and homelessness. Housing was seen as one of the foundational elements of wellbeing because “you need a home, you need a safety” (Participant 9), but in this case “the help network, it starts in the wrong end” (Participant 9), referring to the fact that cessation of substance use was required in order to get housing, when in fact the participant felt that housing would help support the achievement of abstinence. The needs of the local authorities, rather than the needs of the participants themselves, dictated what services they received.“If…I’m homeless, well then I have to find a way to survive, and that’s with the drugs. … That’s the only way I know to survive in the rough I mean. You have to take something to, it’s like 11 degrees below zero now, so it’s cold here, so the only way to keep awake is by using something.” (Participant 3)Lack of housing options for people who use drugs is a particular problem in cities such as the one in focus, where average winter temperatures may be well below freezing, and is highly problematic for the participant population. This, in addition to persistent housing insecurity, gave participants a high level of stress about their futures and in some cases contributed directly to their ongoing substance use as a way to cope. This strategy is one which then may cause a vicious cycle of exclusion from housing services. As one individual described this dilemma:“I use in public toilets sometimes. Well of course I’m getting vulnerable, if I’m using in a public toilet abusing and then going out from the toilet and the cops are coming or something. Then you get problems.” (Participant 2)Those who were homeless and using substances were excluded from municipal housing, and some of those who were housed noted avoiding injecting at home over concerns of eviction. Thus, lack of low-threshold housing programs free of abstinence requirements (as well as lack of a supervised injection facility) led to public injecting “usually in the toilet. Often in the toilet so you can get water. Sometimes with Coca-Cola, or something like that. Once out in the woods, I took water from the ground. Yes, there have been some shady situations at times. But that’s how it’s been” (Participant 8). This was reported by almost all participants, particularly occurring in public toilet facilities. One participant noted that they were potentially going to lose their housing due to their substance use, and described public injection as a way around this, but coming with its own risks, stating:In this case, the participants had to weigh the options of potential arrest versus the possibility of losing their home. This has implications for overdose and bacterial infections in particular, as well as consequences for social issues, such as public persecution, arrest, and stigma.Beyond the direct concerns reported by participants, there were several notable references to the indirect impacts of the lack of these services on their health and wellbeing. These largely stemmed from the macro, policy-environment, and how this affects attitudes towards and inclusion of people who use drugs. The development of both Housing First and NSP in the current municipality is primarily a political question, as the National Board of Health and Welfare and/or the Public Health Agency have promoted their development, while municipal actors have delayed their implementation. Seizure of  injection equipment by law enforcement was commonly reported. In regions with NSP services, staff work with and educate law enforcement on the program, to limit such practices. In this region, this cooperation does not exist and participants had limited recourse to address these confiscations, citing “what shall I do? I go to the needle exchange again” (Participant 1). The presence of harm reduction in the policy environment may lead to cooperation and bargaining between different actors , improved understanding of such issues, and consequently better relations between all groups.“Doctors usually think that I am a drug addict who lives dangerously.” (Participant 4)In contrast to the above-reported high quality and non-judgmental services accessed at the NSP externally, participants “have as little to do with healthcare as possible” (Participant 6) in their own region, because of lack of trust, or a poor therapeutic relationship. Participants felt that the lack of low threshold harm reduction programs was reflective of other, stigmatizing features of healthcare locally:“I wash and maintain my hygiene, and so on. I know that it is difficult for many who end up on the streets. I want to keep my hygiene, so that no one can think ‘Oh but [they], [they abuse]. You see, [they smell] disgusting.’ Or yes, I do not want to be that kind of person. I want to be this person, I have an image that I have to maintain.” (Participant 6)More broadly, participants were keenly aware of their deviant position, and reflected that general society made them feel that “if you are homeless, a drug addict, then you are dirt” (Participant 7). Mirroring that sentiment, another individual discussed how they resisted that identity when possible:“The people are thrown in the wind. They are sleeping in the train station, people are outcasts. They are not feeling a part of the society. Involved in the society. [Such services would] inform them, ‘this is what works, this is what we can afford you’. Then they are getting closer to the society and then they are maybe someday they are thinking again.” (Participant 3)They also felt that the possibility to access certain services would signal a macro-level inclusion and acceptance in society in a different and hopeful way, in the words of one participant:“I may not be feeling really well up here [points to head] … You think a lot, what will my life look like? How will it end? Where should I get money from? How do I solve certain things? And-, yes, where will I sleep? …It’s so much, like, and that’s something that takes a lot of energy.” (Participant 5)“You get very lonesome. You can’t go talk to anyone, and also because of the policy in Sweden, it’s very hard. If you go try to seek help you self-incriminate yourself. … It was very nerve wracking to go seek [care] because I had kids at that time. So … I knew [it was possible] that Social Services would take contact with me and, like, investigate me as a parent.” (Participant 10)Ultimately, this level of exclusion, the multiple competing priorities which it causes, and overall lack of knowledge of what might happen in both the immediate and distant future. Several of the individuals who were interviewed reflected that this was a constant stress and negative influence on their mental wellbeing:“[if drugs were decriminalized for personal use] maybe [I’m] gonna take a deep breath, exhale.”. (Participant 9)The above quote demonstrates the impact of both real and perceived potential discrimination. The punitive consequences of their drug use lead to reticence to access such services which are offered, such as opioid substitution therapy and other substance use treatment programs, or social services. The highly stigmatized and criminalized nature of drug use in Sweden means that the benefits of service access do not always outweigh the potential consequences of identifying oneself as a person who uses drugs. Another participant reflected on the relief they would feel to not be constantly chased:In addition to the measurable outcomes of harm reduction programs, these comments speak to the non-quantifiable impacts of such policies, how they improve interaction with official authorities such as law enforcement, and improve individuals’ psychosocial wellbeing and sense of belonging in society.Engagement in risk-taking behaviours exists at a nexus between the individual and their broader environment. It is clear that the lack of NSP, as well as a Housing First policy, in the locality of study has a greatly negative impact on the individuals in the study, the risks they take, and the ways in which they address those risks. The onus of the procurement of sterile equipment has been entirely placed on the individual who is injecting. The availability (or lack thereof) of syringes is one of the primary factors leading to syringe sharing –71. MostDespite a number of barriers in their way to do so, most participants in the current study engaged in active and committed health-seeking behaviours, and tried to reduce the above-stated risks which are being produced or amplified by lack of services in their own community. Participants described numerous important trade-offs that they made in order to consistently use sterile injection equipment. However, these barriers could prove to be too great at any given time, leading to an increase in risk taking. Contrasting from other studies , 56, 74,As previously described, longer physical distances from services lead to reduced access and increased risk behaviours –50. As oFrom a micro-  and meso-  perspective, the physical risk environment in this setting produces a significant amount of risk and harm. These levels were highly intertwined and interacted with each other, for example, that actions at the level of the individual were often found to make up for absence of services on the community-level. However, this creates complications of its own, as seen with the reliance on social networks for secondary distribution.Not only are the direct risks of the physical environment apparent, the setting of limited harm reduction reflects broader social aspects of these individuals’ lives, which produce, or in some cases mitigate, harms. Goffman  describeCorrespondingly, Bourgois  discusseStigma against drug use may also result in individuals feeling unworthy of care . This waIn this setting, the macro-level “public and legal context of risk management”  (p. 89),With relation to exclusion from housing, homelessness and drug use are often described as a situation of “double jeopardy” which serve to reinforce and compound each other . Lack ofThe macro-policy context also influences the possibilities and focus of police interventions, which have important impacts on the study population . InstituAs a whole, the macro-level policy of zero-tolerance towards drug use, and the stigma it engenders, trickles down to the meso-level of missing services and exclusionary policies. At a micro-level, it also leads to a reticence among some participants to engage in official services, where they do exist, for fear of discrimination, and/or repercussions for themselves or their families. Participants in the current study described stresses and an overall sense of insecurity and uncertainty about their futures. This was reflected in the large proportion of participants who reported using drugs to cope with their current life circumstances. Per Keane , “socialThe current study has a number of limitations. Firstly, due to COVID-19, I was unable to recruit participants directly. I initially had planned to travel to the location of study, and recruit both through relevant organizations, as well as on the street, and through snowball sampling. Instead, I had to rely on recruitment partners from two organizations to recruit on my behalf. This has inherent limitations due to lack of knowledge on how systematically these individuals were advertising or recruiting for the study. I attempted to address this by providing a thorough information sheet and background of my study and having frequent contact with these partners. Ultimately I was limited in my recruitment and was only able to connect with 11 individuals. Attempts to recruit more individuals were unsuccessful due to lack of time resources on behalf of the recruitment partners and their organizations. Nonetheless, the interviews generated rich data of interest and relevance to the study question. Inability to recruit directly or expand beyond the organizational setting has limited my participant population. Individuals who were not participating in either of the programs with which I was in contact would have been missed entirely. This may have included both less marginalized and more marginalized individuals, whose experiences may have been different to the individuals who were engaged in these two programs.People who use drugs may be reticent to participate in interviews, particularly online, due to the criminalized and stigmatized nature of their activities. This may have also influenced responses due to social desirability biases. Some interviews took place in a private office within the organization of recruitment, which may have limited or discouraged participation for some, due to privacy concerns. Furthermore, interviewing a marginalized population involves building a rapport, often through casual contact, which can begin as early as the recruitment stage in making hesitant potential-participants feel comfortable with participating in an interview, knowing that they will not face judgement or stigmatizing attitudes. As I was unable to recruit individuals directly, those who have faced more discrimination in their life and thus fear this may have opted to not participate. This may be seen particularly in that, despite efforts to reach them, only one female was engaged in this study. It is well documented that women who use drugs  in these situations face additional challenges in identifying themselves to services and accessing care –132.Relating to transferability, the small sample size means that attempts to transfer the results to a different population or setting must be done so with caution. Relating to the above limitations, the findings should be especially carefully applied to the lives of women who use drugs. However, the results may be able to inform the experiences of similar groups (people who use drugs) in similar settings (areas without services for this population), and what consequences this has on their somatic health and psychosocial wellbeing. Resistance to harm reduction and variations in such program delivery are not unique to Sweden. Therefore, the current case could elucidate upon the conditions faced by people who use drugs beyond the current context. Especially  relevant might be regional or national border areas, commuter towns, and other such settings where policies and services may vary widely in relatively geographically small areas.Despite decades of evidence, the development of key harm reduction programming has been slow in many Swedish municipalities and regions. The results of this study demonstrate the burden that this delayed, uneven development has had on individuals who are affected by such policies. They must resort to travelling for, buying, stealing, re-using, and sharing their injection equipment. Much of this comes at great personal cost—whether it be time away from family, money for travel, or the potential health impacts of sharing or re-using items. It also reflects further marginalization in other policies, leaving many of the participants in a situation of great insecurity in life, particularly when it comes to housing, as most were unstably housed and many of those who had housing felt constantly at risk of losing it. These participants reflected on their excluded position in society as a whole and internalized their stigmatized identities. NSP and Housing First in particular were focused upon, due to their direct, as well as symbolic, value as interventions of inclusion. Lack of harm reduction services has placed a great burden on individuals to develop strategies to address this, leads them to engage in avoidable risk behaviours, and has created a cycle of marginalization of this population.


The COVID-19 pandemic triggered an unprecedented demand for digital health technology solutions, such as remote monitoring. Previous research has focused on patients with chronic diseases, and their experiences with remote monitoring during the pandemic. Several recommendations have been presented to reduce the frequency of cancer patients’ visits to oncology centers and minimizing the risk of exposure to COVID-19, such as remote monitoring. However, few studies have explored how this has influenced the healthcare services to cancer patients.To explore cancer patients’ perspectives on remote monitoring at home during the COVID-19 pandemic.The study had a qualitative design, using in-depth, individual interviews.A total of eleven interviews were conducted with patients who received remote monitoring during the COVID-19 outbreak. Three of the interviews were conducted by telephone, and eight on a digital platform, audio recorded, and transcribed verbatime. Data were analyzed using reflexive thematic analysis as recommended by Braun & Clarke.All participants were conscious about being vulnerable to infections due to having cancer and receiving cancer treatment, and the pandemic to them represented an extra burden. Most of the participants experienced that their healthcare services had changed due to the pandemic, but there was no consensus on how the services had changed. All of the participants presented remote monitoring as something «new». Whether they received remote monitoring by telephone, video consultations or more advanced solutions with the possibility to complete a questionnaire or fill in measurements, did not seem to impact their views. However, all agreed that remote monitoring could never totally replace physical consultations in hospital. Participants’ views seemed to grow more positive over time, but still they emphasized both positive and negative aspects of remote monitoring solutions in cancer care.Remote monitoring was introduced as a necessity in cancer care during the COVID-19 outbreak. This may seem as an efficient solution, allowing for patients to stay at home and avoid infection. Our results indicate that, in the case of cancer patients, it is important that healthcare personnel balance the remote monitoring solution with person-to-person contact. The declaration of the COVID-19 pandemic lead to an extreme pressure on already pressured healthcare services worldwide . Even beTechnology enabled care (TEC) is a collective term for telecare, telehealth, telemedicine, mHealth, self-care apps, digital health and e-health services . TEC hasA 2021 systematic review of research focusing on remote monitoring systems in primary healthcare , found tPatients with cancer are particularly vulnerable to the SARS-CoV-2 virus and require clinical vigilance to prevent infection , 15. SevThe study had a qualitative design, using in-depth, individual interviews to explore patients’ perspectives on remote monitoring during the COVID-19 pandemic. A qualitative approach is appropriate when aiming to explore how individuals experience a phenomenon, dependent on their background, interests and interpretation . The stuThe study was conducted in a hospital with a catchment area of approximately 320.000 inhabitants. The hospitals’ healthcare services for cancer patients are divided in an in-patient ward and an out-patient clinic. Healthcare personnel are primarily employed both places, and include oncologists, registered nurses and nurses specialized in cancer care. The technology explored in this study was introduced in 2016, and applied in order to limit the need for patients to attend to the hospital. The technology includes solutions for remote monitoring of patients through either mobile cell phones, video conferences, or software solutions included in tablets or computers, also allowing for patients to provide feed-back through responding to questionnaires on a daily basis.We used a purposive sampling method, selecting information rich cases for in-depth study, from the patient group that is remotely monitored. Maximum variation sampling was sought , focusinA semi-structured interview guide was developed based on previous research on cancer patients’ experiences with remote monitoring e.g. , 18, andThe research group consists of three registered nurses  with extensive clinical experience as well as experience with qualitative research methods , two oncologists , one registered nurse  working in the cancer department and one user representative . In the current study, only five of the research group members took part in analysis and writing of the paper, due to confidentiality issues.After having consented to participate, patients were contacted by one of the researchers, and an appointment for an interview was set. Due to the COVID-19 pandemic, interviews needed to be conducted remotely, preferably through the safe digital platform Zoom. Participants who did not desire to participate digitally, were offered to participate per telephone. Participants received an email describing how to open the platform. In total three patients were interviewed by telephone, the rest through Zoom . Both the interviews conducted in Zoom and the telephone interviews provided rich data for analysis.Before and after each interview the researchers wrote down thoughts and impressions that could possible impact the interview, or the interpretation of what was said, as a method of reflexivity . InterviTo analyze the data we used a reflexive, thematic analysis according to recommendations from Braun & Clarke , 25. TheIn total 11 in-depth, individual interviews were conducted in the period March to May 2021. Six of the participants were female, five were male, their mean age was 56 years (range 45-83). Four of the participants received remote monitoring through telephone calls only, while five participants had used video-conference through Skype or Zoom. Only two of the participants had used a digital solution which included answering questions about their condition on a daily basis, which were submitted on-line, allowing for healthcare personnel to assess the response and respond if needed.Through analysis we identified two main themes with related subthemes; 1) The pandemic-an extra burden, with subthemes a) views of physical hospital visits, and b) changed services, and 2) Remote monitoring cannot replace human contact, with subthemes a) ambivalent perspectives, b) technological challenges, and c) saves time and energy. Results are supported by illustrative quotes, marked with participant number (participant = P) in parenthesis.All of the participants were conscious about being vulnerable to infections due to having cancer and receiving cancer treatment. Hence, the pandemic to them represented an extra burden. Their views on physical visits to the hospital differed. Moreover, most of the participants experienced that their healthcare services had changed due to the pandemic, but there was no consensus on how the services had changed.If we try to avoid this (the virus) … the hospital isn’t the right place to be. I wasn’t very interested in going to the hospital, staying in the corridors there»«Others perceived that the hospital was safer than other public areas due to the heavy limitations. This indicates that participants were aware of the risk for catching illness when in public, and that this was something they reflected about. Participant 1 described that the situation regarding risk of catching the virus due to contact with other people had decreased due to everybody using face masks. Participant 11 stated:Early during corona, it was no control at all, I think. But, afterwards this has become our safety, because the initiatives have led to the hospital feeling safer»«About half of the participants mentioned that they felt that the hospital was «the safest place to be» due to strict legislations, and since the frequent physical visits were necessary they appreciated this. Participant 9 quoted:All of the participants stated that even if they had received remote monitoring services during the pandemic, they still needed frequent physical hospital visits for medical treatment such as chemotherapy. Their views on attending the hospital was two-folded: some perceived that physical visits to the hospital were an increased risk for getting COVID-19 or any other infection. For example, participant 6 stated:I’m not so stressed, I do not get near other people anyway … Life is too short to worry, I rather feel taken care of … so, I’m not afraid to go to the hospital”.«Hence, the participants’ perspectives on whether it was safe or not in hospital for them as being sick to cancer and with an increased risk of getting the COVID-19 virus varied. This did not seem to relate to whether the participant was in a terminal phase of the disease or not.If I don’t want the remote monitoring it’s no problem. I often get a choice … But, I think that if it wasn’t for the corona, remote monitoring wouldn’t have been an issue … No questions about that before the pandemic … But, I think that remote monitoring has been positive»«Some of the participants emphasized feeling that the remote services had limited their services too much. E.g. participant 5 reported:… getting treatment trough physical meetings versus always feeling alone is the worst...and all the follow-ups in-between chemo were cancelled … So, I feel that this has been tougher … ”« This was supported by e.g. participant 4, who experienced lacking services that were offered in «non-pandemic» times, which she had read about in information brochures:… the negative is that you feel … that the examination should have been physical, and was not … The conversation is okay, but she (the physician) said that she was meant to examine my breasts, and I got a remote monitoring appointment»« Due to the cancer diagnosis, several of the participants reported being vulnerable, and needing lots of information about the progress of their illness, about the treatment and about adverse-effects of the treatment. In this situation, many of the participants emphasized the importance of including relatives in both remote and physical consultations. Participant 4 had experienced that relatives were not allowed in the hospital, even when receiving information about the diagnosis the first time:… one could wish, and it is also recommended in hospital, as she (the physician) told me at my first control after I got the cancer diagnosis, that I should bring along a relative because four ears hear better than two … But, they (the relatives) were stopped at the entrance … »« Regarding relatives attending the hospital visits, this varied between participants. Participant 5 prompted:..you don’t always catch what’s been said.. It depends on your own mental condition. And they often recommend to bring a person. I took my husband to the consultations, and he heard other things than I did, because I was black, but he also heard the positive feed-back»«Hence, there was no agreement across participants on whether the remote monitoring solution represented equal health service as “traditional health services” to cancer patients- or if the “change” was to the better or to the worse. It seemed like participants who had experienced missing information or missing out on services they expected to receive, were the most negative to remote monitoring replacing physical consultations.All of the participants experienced that the healthcare services had changed due to COVID-19. But, the way the services had changed varied, according the participants. All of the participants experienced that physical meetings were replaced by remote monitoring. Still, some also stated that they experienced having a choice regarding remote monitoring. For example, participant 7 prompted:All of the participants presented remote monitoring as something «new», and their views on this solution varied. Whether they received remote monitoring by telephone, video consultations or more advanced solutions with the possibility to complete a questionnaire or fill in measurements, did not seem to impact their views. However, all agreed that remote monitoring could never totally replace physical consultations in hospital. Participants’ views seemed to grow more positive over time, but still they emphasized both positive and negative aspects of remote monitoring solutions in cancer care.When you have a severe illness, there’s something about meeting a person because you are uncertain about so many things … When sitting like we do now (video interview), after having hung-up, because you are anxious about results and you forget to ask, even if you have written it down … The focus on the screen takes over, I catch what she (the physician) says, but then I forget. For my next appointment I have asked to come to the hospital»«Moreover, several of the participants felt that remote monitoring represented a kind of distance between them and the physician or nurse. Participant 5 stated:The limit for talking about things gets higher during video consultations. You think that the time is limited, and then you try to just say what’s absolutely needed … Body language is absent, and short anecdotes or comments as well, gets somewhat more formal … The little details that gives a lot of information are gone»«Still, all of the participants, except one, reported that remote monitoring filled its’ mission allowing for follow-ups in-between physical visits to hospital due to needing treatment or physical examinations. However, several of the participants described that remote monitoring had to be initiated after having met the physicians and nurses in person. Participant 11 described it like this:It’s human-to-human meetings in physical presence, sitting on a chair beside the physicians’ desk … You get another sort of contact, eye, body, everything … I think this takes longer time through remote monitoring … I think the first meetings should be face-to-face … »«Participants who initially felt uncertain about remote monitoring reported that this changed after having used this some time. Participant 4 explained:When I read about it, I thought it might be a bad solution, not good enough … But, after we talked for about 45 minutes, I felt more safe … »«The participants appreciated that physicians indicated having much time available during the remote monitoring session, in contrast to feeling «in-line» at the hospital. Moreover, remote monitoring easily allowed for participants to get in touch with healthcare personnel when needed. Participant 1 prompted:I know I can call if there’s something I have forgotten … Not as easy if you’ve been to a physician, overloaded with information and walks out the door. Then you’re finished … It’s easier to be followed-up, and after a phone call it’s just for me to call back if needed.»«Participants were on one hand satisfied with avoiding the long travel distance to hospital, but on the other hand they were critical to remote monitoring totally replacing physical consultations. In addition, participants’ reports underline the importance of proper information and support when being offered remote monitoring.Most of the participants reported initially feeling uncertain about remote monitoring. This was often due to participants not feeling familiar with video consultations. Participant 9 elaborated:It’s quite bad..lagging, and she talks and I hear it afterwards … Last time the net fell out..»«Participant 5 also stated that the remote monitoring solution required updated equipment at home. She elaborated;If the connection is bad, and the systems are lagging so that we cannot talk as we want, it gets very negative. In the beginning, it went black, lagged … I had to improve my system at home, and I think the hospital did some adjustments as well. It requires a proper internet, and fast equipment»«Participant 11 told about being without internet coverage, having to wait in bad weather, and having to update or re-install applications. He stated:It has to be user-adjusted. It requires that you understand the user interface, dare to download the app, make updates and so on … »«These findings underline the importance of patient education when using remote monitoring, and to ensure that patients have proper equipment for such services at home.Several of the participants reported to be familiar with technology and digital meetings before the pandemic, even if not in relation to their illness. They perceived that having this competence in front was an advantage, and some reflected about how remote monitoring could feel like for patients without such competence. Regardless of this, all of the participants emphasized the importance of avoiding technological challenges, which several of them had experienced. Participant 9 quoted:You can do it at home, doesn’t take more than half an hour … Otherwise, you have to go back and forth, take blood-samples, then a long time before the treatment, and then I get two days at least feeling exhausted … »«This was supported by most of the participants. Participant 1 also emphasized other positive effects of remote monitoring:Even if the physician or nurse is delayed, it doesn’t matter. Everything takes less time. Just have to be ready for a call in two minutes, I have it with me (the cell phone), it’s the same whether it is now or in ten minutes»«In addition, several of the participants felt like remote monitoring allowed them to «live like normal», not having to adjust their lives to «being sick». Participant 5 stated:With remote monitoring I can be at work. Just plan for a meeting, like any other meeting … And from home-office as well, just log-off and log-on»«Participant 8 also elaborated:and I don’t even have to be at home. I can sit in my caravan in the mountains and make the appointment there»« … Hence, remote monitoring did not just save energy and time, but also allowed participants to use their energy in «good periods» on meaningful activities. Cancer patients are critically ill, as were the participants in this study. The findings in this study indicate that it is important for them to choose for themselves what they spend their valuable (and sometimes limited) time on.Most of the participants appreciated that remote monitoring was effective, and saved time. Several of the participants reported of periods with feeling exhausted due to deterioration or treatment side-effects. Then, not having to go to the hospital, waiting in line in a crowded waiting-room, and spending two-three hours in hospital felt like a relief. Participant 3 said:We found that patients experienced the COVID-19 pandemic as an extra burden in addition to having a cancer diagnosis. Hospital visits were both perceived as safer than other out-of-home activities, and as a risk. All of the participants had experienced that services changed due to the pandemic. Moreover, they agreed that remote monitoring never could totally replace physical meetings. Nevertheless, they appreciated some advantages, such as remote monitoring saving time and energy.Participants in our study reported that services had changed due to the COVID-19 pandemic. Some experienced more limited services, while others experienced a more frequent contact with healthcare personnel due to the remote monitoring solution. A 2021 systematic review identified a reduction in routine activity of cancer services, such as a delay in surgeries or radiotherapy, as well as rescheduling or cancellation of outpatient visits . Cancer All of the participants in our study agreed that remote monitoring could never totally replace person-to-person meetings. Even if participants’ views seemed to grow more positive over time, they emphasized both positive and negative effects of the remote monitoring. Studies have shown that cancer patients appreciate that remote monitoring provides information and a clinical safety net, also being a link to the nurses and physicians during a period of isolation , 32, 33.Interestingly, several of our participants were monitored through telephone, and three of the patients chose to conduct telephone interviews. Similarly, a study of 385 cancer patients found that the preferred method for communication was a phone call with a 92% response rate followed by the electronic patient portal, mobile application, telemedicine and text message in 75, 76, 73, and 72%, respectively, all as a substitute to in-person interaction with their physicians . Even ifCancer care often involves a team of health professionals, which necessitates complex interconnected communications for optimal clinical decision making . It has Conducting interviews through a digital platform or by telephone may have led to us not being able to assess participants’ expressions, emotions and non-verbal alterations. However, in-person interviews are assumed to be only slightly superior to video calls , and dueThe COVID-19 pandemic added an extra challenge for cancer patients, due to already being vulnerable. Physical consultations were replaced with remote monitoring solutions, which represented both advantages and disadvantages.Our findings indicate that cancer patients are not a homogeneous group of people, but have to be seen as individuals. In the future it is important for healthcare personnel to focus on limiting the disadvantages, e.g. through finding viable solutions that do not require specific equipment, skills or a fast internet-connection. In addition, it is essential that remote monitoring do not totally replace the person-to-person meetings, suggesting that the initial meetings are physical to build a relationship between patient and personnel.


There is evidence that childhood adversity is correlated with poor health outcomes across the lifespan. Resilience results when internal and external protective factors in childhood mitigate this relationship. However, among children on the autism spectrum, these relationships are understudied, and little is known about the characteristics and role of adversity and resilience in their in their lives. This study interprets these phenomena as experienced by autistic young adults.Initially, we conducted community engagement with five members of the autism community who advised on the research question, research design, and analysis. Subsequently, four autistic young adults, three women and one non-binary, aged 19–27, were recruited to participate in semi-structured interviews via phone, video conference, and online chat. Credibility checking interviews followed data analysis.social disconnection, mental and emotional well-being, sense of self, and development into young adulthood. Resilience developed in places of refuge and identity and was evident in their transitions into young adulthood.Through interpretative phenomenological analysis we identified themes related to the negative effects of adversity, including These findings provide direction for decreasing adversity and fostering resilience in children and adolescents on the autism spectrum. IPA is rooted in phenomenology, which focuses on describing human experiences; hermeneutics, which seeks to interpret and make meaning of participants’ experiences; and idiography, by which researchers attend to the details and context of a participant’s experience , three women and one non-binary volunteered for this study. While the eligibility criteria for this study did not exclude participants based on gender, self-selection resulted in a participant sample that did not include any men. This allowed us to explore the unique experiences of women and non-binary participants, who are underrepresented in autism-related research . Both community advisors and participants reviewed the informed consent form and gave written or audio-recorded verbal informed consent prior to their interviews.As per the advice of community advisors, participants were offered a variety of participation options . Two participants participated by phone, one opted for videoconference, and one engaged via online chat. In-person interviews were not offered due to COVID-19 safety concerns. The first author conducted the interviews. All participants opted to preview the interview guide. To enhance transparency and understanding, the interview guide provided detailed explanations of the purpose for each question and contained both open-ended questions and concrete, specific prompts . Interview topics included childhood adversity, resilience, and mental health. Video and phone interviews ranged from 58 minutes to 107 minutes. Phone and video interviews were audio recorded and the online chat log was saved. Participants received a $25 gift card following the interview.As per IPA, each participant’s data were thematically analysed as a single case, and then analysis was completed across cases to identify common themes ; and stigmatization, wherein they were negatively labelled and consequently mistreated by others, both of which led to social disconnection. Not surprisingly, participants were ostracized by peers. Hannah recalled being unwelcome among peers: “People were just telling me that I don’t deserve to be here.” Additionally, some participants were ostracized by adults. Shirley recounted an experience with her grandmother: “I started drumming on the table because I was so happy. [My grandmother] asked my mom to escort me out because I was disrupting her pets.”Because I was in that spec ed/gifted class … we were still segregated from the rest, were still the different or the special kids. And while I’m really grateful that we had a specific place for us, why are we the ones that have to be treated as the other?Participants recounted a range of experiences of stigmatization. They described being negatively characterized and subsequently deemed unworthy and unwelcome. For instance, Hannah recounted the consequences of being labelled as unstable: “[I was] constantly being called a psycho, being beaten up at school.” The stigmatization Chris faced at school by peers was reinforced by teachers: “they were making a point of making sure that everybody knew that I was different and wrong. I had been built up as like this problem child who did everything wrong on purpose.” In a follow-up discussion, Saoirse expressed how policies and practices within the school system set her up to be ostracized and stigmatized:suicidal ideation and emotional distress.Participants in this study expressed a history of mental health challenges and emotional distress. These issues began in childhood and, for all four participants, continued into adulthood, with varying degrees of severity. Their experiences of childhood adversity particularly influenced I hated myself since I was 5, actually …. I was really sad all the time. I was angry. I couldn’t control my anger …. When I was in high school [I] started therapy because my anxiety was really bad.Suicidal ideation emerged as a common experience among participants. Chris’s suicidal thoughts and behaviours began at a young age: “I had first experienced suicidal ideation when I was eight … my first suicide attempt was when I was nine. It was rough.” Related to suicidal ideation was emotional distress. This included emotional pain, sadness, anxiety, anger, and self-hatred. Hannah experienced distress from a young age:Shirley recalled, “As a child I was depressed a lot because I was always bullied at school or by my dad …. I’d say my mood was hurt and confused through my childhood.”unlearn learned behaviours and had difficulty with adult relationships.Saoirse frequently characterized her experiences of adversity as “formative,” and this attribution was similarly reflected in the other participants’ accounts. Formative experiences were those that influenced participants’ development, including how they interacted, behaved, and felt in adulthood. As they entered young adulthood, they had to I was using the same awful tactics that my father was. I was using aggression, and hatred and resentment, anger … I ended up just like my father …. And I was like, no, I can’t do that …. And that’s what made me look inside and do a lot more internal work.The adversities that participants encountered were complex, ongoing, and pervasive. These experiences were interwoven with the development of their attitudes, beliefs, values, and behaviours. Over time, they learned that there were alternatives to these views and behaviours and, in some cases, that they were unhelpful or even unsafe. For example, Saoirse’s father modelled aggression:Yeah, the relationships I had growing up in my family just did not give to me the tools … to communicate properly with people, to have a productive and positive conversation, to make friends, [or] to repair relationships.Furthermore, participants experienced challenges with initiating and maintaining adult relationships. Shirley said, “I’ve also been in tons of failed relationships and recently got out of an abusive one which I feel is all linked to my past experiences.” Saoirse described how her template for interacting with others developed through interactions with her father:shame and powerlessness.Participants held many negative perceptions of themselves and a lack of agency, which developed through feelings of Honestly, I felt very claustrophobic trying to hide who I was. Almost like you were trying to physically stuff me into a literal desk drawer at times …. I wanted to be normal and ‘non autistic’ growing up so I studied my peers to try and be like them.Experiences of adversity taught participants that they should be ashamed of themselves because they were different and inadequate. Shirley tried desperately to hide her autistic identity from others:Chris felt unworthy and inferior, “it was a lot of me internalizing that I was a bad person.”Along with shame came feelings of powerlessness. Participants described feeling that they had no capacity to change their circumstances. Saoirse said of her conflict with her father, “it didn’t matter what I tried to do with my life …. it seemed insurmountable and I wasn’t going to be able to do anything, because I wasn’t allowed.” Hannah felt powerless to her emotional dysregulation, “I never meant to hurt anyone. It just happened because I lost control.”Resilience, to me, means fighting back in the face of adversity … it sucked, but you had to deal with it, and you had to find a way to either overcome it, circumvent it, or cope with it.Participants described factors in their childhoods that protected them from the effects of adverse experiences; resilience was interpreted as a function of these factors and evidenced in positive outcomes. In speaking about the meaning of resilience in their lives, participants identified internal and external factors that provided them with security, stability, and support in the face of adversity. Each participant defined resilience differently; however, their definitions alluded to a perseverance in the face of adversity and resistance to its potentially detrimental effects. From Saoirse:places of refuge and identity. Additionally, resilience influenced transitions into young adulthood.Resilience factors were interpreted as being present in interests and talents and their imaginations.Resilience was fostered in safe spaces, where participants could escape from the ongoing and relentless stress of adversity in their lives—places where they were free to be themselves. These places of refuge were not only physical spaces, but also connection with other people and internal resources. Participants found refuges in external spaces—communities that were accepting and that gave participants a sense of belonging. Internal places of refuge included immersion in their [My aunt] always made me laugh by being silly and so did my cousin who lived with her …. I remember in the summers we’d stay there he’d look through teen magazines with me, do the high school musical sing-alongs with me, etc., and my aunt was always pretending to be clumsier or sillier than she really was.Participants found refuge and safety when they were accepted by others unconditionally and when they were able to feel a sense of belonging with others. Shirley recalled feeling safe with her aunt and cousin:Those kids were like me. That was really awesome. That was the first time that I had seen a conglomerate of classmates that had similar characteristics. And then I kind of realized, wow, I don’t have to cover up anymore, necessarily. I don’t have to wear a mask. I don’t have to try, and you know, spend the abhorrent amount of energy that I do trying to fit in in a neurotypical world. I could just be with these kids and it would be great.Saoirse highlighted her high school experience in a gifted programme:Participants found internal refuge in the activities they were passionate about. Hannah expressed how she depended on her special interests for stability and security, “having a special interest to rely on … I really enjoyed lining up Little Pet Shops and organizing them. I acted out scenes from my life.” Saoirse described how her musical talent helped her, “if I needed to feel good … I would just sing and play the piano for hours and pretend. It was a really nice escape.”Similarly, Chris recalled retreating into their imagination, as that was somewhere their hardships did not exist, “My favorite thing to do was to go to the pool and just swim. And I would like to imagine I was a fish or a mermaid or whatever because it was like an escapism thing.”developing self-understanding, personal attributes, including determination, and a sense of pride.While adversity influenced participants’ sense of self and self-perception, their identities, namely their personal traits and uniqueness, also contributed to their resilience. The aspects of their identities that promoted resilience were Most people just think that I am a little bit more to myself, or … ‘strange’ or ‘eccentric’ or ‘weird’ are the terms that were used with me as a child … but I didn’t find anything wrong with being ‘eccentric’ or ‘strange’ …. I mean, frig, they called Belle in Beauty and the Beast strange and I was like, she’s not strange! She just likes to read books. I like to read books, too. What’s weird about that?Related to adversity, participants talked about lacking self-understanding and being mystified by their own thoughts, feelings, and behaviours. Conversely, as participants developed self-understanding, they could integrate their uniqueness into a sense of identity, which influenced resilience. For example, Saoirse remembered identifying with Disney characters as a child:I got diagnosed when I was 17 years old and it was a really eye-opening experience because it finally explained what was going on in my childhood … I thought I had a personality disorder because I was so emotionally unstable, but it turned out to be just autism and that my sensory needs weren’t being met.Hannah discussed how receiving an autism diagnosis changed her understanding of herself:Realizing that the problem wasn’t necessarily me … after that, I applied to university and college without [my father’s] permission. Because I was like, you know what? I will be damned if I am not allowed to go out and live my life.Personal attributes, such as Shirley’s sense of humour, contributed to participants’ overall sense of identity and resilience to adversity. Shirley said, “I’ve adapted a very dark sense of humor to my life experiences.” Additionally, several participants expressed their determination to make changes in their lives and circumstances and to be heard, despite the negative effects of adversity. As Saoirse’s understanding of her circumstances shifted, she gained the confidence to improve her situation:Finally, developing a sense of pride in one’s accomplishments served as a resilience factor for participants. Hannah spoke about her school achievements, “I’ve always been a high achiever academically. I’m a straight A student and always have been. And I work really hard and really enjoy studying and that’s something that I’ve always taken pride in.”social connections and demonstrated moving forward with their lives.For the participants in this study, resilience meant positivity and growth in their young adult lives, despite their experiences of adversity, which was evident as they developed In young adulthood, participants expressed newfound social connections, including friendships and romantic relationships. Saoirse expressed gratitude for her current social connections, “I have amazing other supportive friends [and] my partner who I disclosed most of this information to. So, yeah, I’ve had really great people around.”Participants were future-focused—making plans and engaging in activities, facing challenges with adaptability. Hannah happily noted how she had learned to regulate her emotions and behaviour, “On the whole, I am pretty much in control most of the time, I can control the sensory input. Saoirse described her life after leaving home, “I was able to explore the world … I started hanging out with people that I otherwise wasn’t allowed to hang out with. I started trying different activities.” Chris enrolled in a post-secondary programme and engaged in entrepreneurship, “[I’m] starting a small business with my friend.”In this study, participants’ experiences of childhood adversity varied, however the effects were commonly destructive to their well-being and sense of self. Furthermore, there was commonality in their experiences of resilience. The influence of adversity in the lives of participants was not solely related to mental health, as has been identified in the research literature (Bellis et al., Research has indicated a relationship between mental health symptomology and adversity in non-autistic children (Bellis et al., Some theorists posit that the neurobiological characteristics of autism influence how adverse experiences are perceived by autistic children, thus mitigating or exacerbating their effects Im, ; howeverAdditionally, the present study goes beyond epidemiology and provides an in-depth exploration of the meaning of resilience in the lives of participants. In typically developing children, resilience is theorized to be the result of the mitigation of the negative effects of adversity by internal and external protective factors. Individuals who experience better health outcomes despite significant childhood adversity are considered resilient and this characteristic is attributed to the protection provided by common factors in their young lives (Gartland et al., The present study provides new insight into the experiences of childhood adversity and the meaning of resilience among autistic adults. While these findings need to be considered in the context of a small sample size, the sample is reasonable as per IPA methodology. Our findings offer nuanced attention to the details of participant accounts, thus providing an in-depth understanding of these phenomena in the lives of participants. Additionally, IPA provided an opportunity to hear directly from autistic individuals about their experiences, rather than drawing conclusions from non-autistic, outsider observations. This, along with integration of participatory methods into the study design (Heselton et al., Consistent with IPA, we engaged a small, homogenous sample of participants, which presented several limitations. Given that there were no male-identifying participants, the findings are somewhat constrained by gender; the experiences of men and boys may be different. However, given the gender bias towards men and boys in the diagnosis of autism, women and non-binary individuals are underrepresented in research (Lai et al., Additionally, several community advisors suggested that limiting recruitment to individuals who had been diagnosed prior in childhood would exclude valuable input from those who went through childhood without a diagnosis. Future research comparing the experiences of autistic participants diagnosed in childhood rather than adulthood, or those self-diagnosed in adulthood, could provide understanding of the influence formal diagnosis has on experiences of childhood adversity and resilience.Lastly, all participants had strong verbal communication skills and their accounts were not limited by expressive language differences. Given that differences in social communication and language use are commonplace for autistic individuals, the number of autistic individuals who are non or minimally speaking, and the high percentage of individuals on the autism spectrum with co-occurring intellectual disability, the results of this study may not be wholly representative of their experiences. This sub-set of the autistic population is understudied, and future research could explore their unique experiences of childhood adversity and resilience.From the present study, we learned that childhood adversity has significant and long-term effects on the lives of autistic individuals, including their social connectedness, their emotional and mental well-being, their sense of self, and their development into adulthood. Furthermore, from these findings, it is evident that resilience plays an important role in providing safety and escape from adversity, maximizes individuals’ strengths to endure and overcome the adversity, and influences positive outcomes in early adulthood.These findings compel clinicians and caregivers to pay attention to the potential sources of adversity for children, and to attune to the potentially ambiguous effects of those experiences and seek to foster resilience. This is similar to the conclusions of Ahlström and Wentz , who sugWhen identifying and executing formal resilience-building interventions, it is important to recognize the potential pervasive and complex influence of adversity in the lives of autistic children and be aware that adversity affects more aspects of a child’s life than their emotional and mental well-being. There is ample evidence supporting resilience-building programmes in non-autistic children to improve their mental health (Dray et al., These findings describe the pervasive and critical influence of childhood adversity on the lives of children on the autism spectrum and the unique, and often misunderstood, aspects of being autistic that may contribute to resilience. Their insights give a deeper understanding of how adverse childhood experiences affect young people and how better to support the development of resilience to minimize poor outcomes in adulthood. Clinicians and caregivers must be aware of the complex and pervasive effects of adversity on children on the autism spectrum, strive to minimize potentially adverse experiences, and work to foster internal and external resilience factors in these children.Click here for additional data file.