This qualitative study explored the commonalities and differences among the experiences of visible minority Transnational Carer–Employees (TCEs) before and after COVID-19. TCEs are immigrants who live and work in the country of settlement while providing caregiving across international borders. Purposive and snowball sampling resulted in the participation of 29 TCEs of Pakistani, Syrian, African, and South American origin living in London, Ontario. Thematic analysis of the dataset using the ATLAS.ti software, Version 23.2.1., generated three themes: (1) feelings associated with transnational care; (2) employment experiences of TCEs; and (3) coping strategies for well-being. The results of the secondary analysis conducted herein suggested that there are more similarities than differences across the four cohorts. Many participants felt a sense of satisfaction at being able to fulfill their care obligations; however, a different outlook was observed among some Syrian and African origin respondents, who disclosed that managing care and work is overwhelming. Most TCEs also reported facing limited job options because of language barriers. While various interviewees experienced a lack of paid work and reduced income after COVID-19, a distinct perspective was noted from African descent TCEs as they expressed facing increased work demands after the pandemic. Participants additionally revealed four common coping strategies such as keeping busy, praying, family support, and staying active. Study implications include the promotion of Carer-Friendly Workplace Policies (CFWPs) that can facilitate the welfare of unpaid caregivers. This research is important as it may inform policymakers to create opportunities that may not only foster economic stability of TCEs and the Canadian economy, but also contribute towards a more equitable society. In Canada, there are approximately six million carer–employees (CEs), representing 35% of the total workforce . CEs areMoreover, the rapidly changing age structure of Canada is increasingly causing family and friends to take on caregiving roles . IncreasCurrently, there are 500,000 new immigrants entering Canada annually . This isWellbeing, Space & Society. The secondary analysis conducted herein generated two publishable manuscripts, the first paper (currently under review) centralized on the experiences of transnational caregiving among visible minority TCEs. The current paper further goes on to explore the commonalities and differences among visible minority TCEs.This study is part of a larger research program investigating carer-friendly workplaces that examines the experiences of Indigenous, European, and Visible Minority TCEs based in London, Ontario . The goaA systematic review by Sethi et al.  discloseFurthermore, a survey conducted in 2020 by the Carer Well-Being Index looked at the impact of COVID-19 on 479 caregivers employed in the Canadian workforce ,4,7. To To better understand the similarities and differences among the visible minority TCEs in this study, it is useful to grasp some of their cultural characteristics such as family size, belief systems, family cohesion, and care expectations. For starters, the average household size among Pakistani, Syrian, African, and South American families tends to be 6.4, 5, 6.9, and 4.6 persons per household, respectively ,20,21,22I, Reemal Shahbaz, conducted the secondary analysis in this study and I identify as an able-bodied, cis-gendered female, with a Pakistani origin. I immigrated to Canada with my parents and siblings when I was nine years old in March of 2010. I am currently 22 years old, and my worldviews are consistent with constructivism as I believe that multiple realities can exist and that knowledge is subjective and a social construct. My undergraduate degree in Honours Life Sciences and the coursework I have completed for my graduate studies in Global Health grant me a comprehensive foundation to analyze the experiences of visible minority TCEs. My academics have trained me to emphasize cultural sensitivity, and as a result, I may be better able to recognize how diverse norms and practices impact unpaid caregiving dynamics among TCEs. I was not involved in the data collection of this research; nonetheless, while I was analyzing the data, I quickly realized that my own situations and motives align with the recruited TCEs. Like the respondents, I am a visible minority immigrant who lives and is employed in Canada whilst providing transnational caregiving to individuals in the country of my origin. I have grown up to believe that it is my religious obligation and a cultural expectation to care for my parents, siblings, extended family members, and those who are in need. Due to my educational background and personal experiences of being a TCE, I may be biased to focus more on the pressure and stress associated with caregiving and the need for caregiver-friendly and gender-sensitive policies to be implemented in Canadian workplaces. To limit my biases from impacting the research, I kept an open-minded approach and was prepared to challenge my assumptions and preconceived notions throughout the data analysis. During the write-up of the research, I kept a reflexive journal and was critically reflecting on my own thoughts and ensuring that they are not imposed on the results. Therefore, I made a deliberate effort to ensure that the voices and narratives of the study participants drive the analysis of the multifaceted experiences of employed transnational carers.This study was approved by the McMaster University Research Ethics Board  and King’s University College Research Ethics Review Committee (21 June 2019). The Qualtrics software  was used to acquire informed consent from all respondents of the research. All respondents were given an honorarium, valued at CAD 35, for their time. The participants were informed that their participation in the study would be voluntary and that they could withdraw at any time if they wished to do so. To protect anonymity, the real names of all interviewees will be kept confidential, and they are referred to in this paper by pseudonyms.London was selected as the location of interest as it is a city that has experienced a rapid increase in immigration in the last few years . In 2021The philosophical orientation that informs this research is constructivism. The constructivist paradigm explains that reality is a social construct and is perceived to be subjective ,36. ConsA community-based and ethnographic design was used for this research to obtain knowledge of the lived experiences of visible minority TCEs residing in London, Ontario. This epistemological domain allows researchers and members of the community to work together in the research process . EthnogrTo be recruited for this research, participants had to be aged 18 years or above, living in London, identifying as a visible minority, providing care to a family and/or friend living across borders, and volunteering or being at a paid employment. The inclusion criteria did not focus on whether the immigrants held permanent residency status or how long they had lived in Canada. The inclusion criteria also did not focus on whether TCEs were specifically caregiving for individuals with mental or physical illness. Participants were asked for a one-time, one-on-one interview.Research posters were placed in community centers, grocery stores, local libraries, and mosques. Recruitment posters were also sent to organizations that provide services and aid to immigrants. Data were collected from October 2019 to March 2021. Purposive and snowball sampling elicited 29 visible minority TCE participants for this study. Purposive sampling technique allows researchers to intentionally select respondents that meet the unique characteristics and experiences that are relevant to the research question . CorrespThe secondary analysis of the data in this study is consistent with Braun and Clarke’s  thematicThe thematic analysis for this study was carried out in six steps as described by Braun and Clarke . The firThe data for this study consisted of information from 29 visible minority TCEs living in London, Ontario. A visible minority individual is described as a person who is not aboriginal and is non-white in colour or non-Caucasian in race . One intThe results of this research determine that TCEs experience a wide range of emotions when providing care on a transnational scale. Prior to the pandemic, a commonality among many of the visible minority TCEs recruited for this study was that they reported feeling content, energized, and gratified about having the opportunity to give back to their family. Sabrina, a Pakistani origin TCE said: “It [caregiving] gives me peace”. On a parallel note, Adam, a Syrian descent TCE, stated: “It is a reward for sure […] you help feel happy you help them [care-recipients]”. Nogi, a TCE of African descent voiced: “I tell people this is the source of my energy, when I see that I’m able to help somebody. It’s like a force, it keeps me going”. Comparatively, even after the pandemic, respondents reported feeling a sense of tranquility, comfort, and satisfaction for being able to fulfill their obligation to provide care for their loved ones and community. For example, Helena, a TCE from a South American background mentioned: “Sending them [care-recipients] money makes me feel satisfied, so satisfied, I mean, I love, and I adore my family”. Likewise, Martina, another respondent with South American roots explained: “I feel very happy, and I feel very calm that I can provide support for my mother”. Jemmy, a TCE of African descent supports these feelings and disclosed: “I feel very, very good that my support helps them in a way that improves their lives”. Therefore, these quotes exhibit that most of the visible minority TCEs in this study experienced positive feelings about the care that they were providing to their care-recipients both before and after COVID-19.Another commonality among the participants was that they felt the urge to provide more help and that if they were unable to, they would then experience guilt, regret, and remorse. In the interviews that took place prior to the pandemic, respondents from all four visible minority groups voiced that their financial constraints limit the extent of how much they are able to provide for their loved ones. Interviewees revealed that although they are only able to provide limited transnational care for the moment, their goal is to do more in the future. Rasha, a TCE of Syrian descent said: “I regret that I am not able to help and support them [care-recipients] and can barely send a small token of financial help”. On a similar note, Nogi mentioned: “I would love to do more […] I wish I could, you know after this school, maybe more”. Nina, a TCE with African heritage also described: “In the end maybe I might not be able to provide as much as I want for my parents and my family back in Nigeria at the moment, but after a short while I can do way more”. Comparably, the interviews that were conducted post-COVID-19 depicted results on the same wavelength, as many respondents continued to feel that the extent to which they can help was hindered by their other responsibilities. For example, Alajide, a TCE of African ethnicity, said: “As much as I would love to, I’m only limited and even my family I can’t give them the best I wish I could provide right now”. Equivalently, Anela, a TCE of South American descent declared: “I always feel like I should be doing more than what I’m doing […] I could be helping more, even if I have this job, I’m only working on the weekend and then I still can’t give enough”. Sherla, another South American TCE living in London, further established: “I wish I could do more, but due to circumstances there’s only so much you can because you have other things to take care of”. Therefore, financial hardships and other commitments are evidently impediments that mitigate the capacity of TCEs to engage in the desired amount of caregiving, and thus result in a constant desire to want to do more.Contrarily, there were differences observed among African and Syrian descent TCEs relative to the other two cohorts regarding feelings associated with transnational care. Prior to COVID-19, some participants from African and Syrian origin revealed that they felt overwhelmed with the amount of their care duties. Nina stated: “It’s overwhelming. I’m talking about this care […] I just even need a day off”. Likewise, Alajide explained: “Aside the financial burden, it [caregiving] is emotionally draining […] I mean I have to balance the fact that I need to provide for my family as you put it, in a new country, which is more expensive”. Rasha also reinforced these notions and distinguished: “I feel I am suffocating— I feel I should be able to know when they need it [financial aid] before they have to ask [...] it really upsets me”. Correspondingly, in the interviews after COVID-19, a few TCEs from African and Syrian backgrounds continued to describe that caregiving can be frustrating. For instance, Arif, a TCE of African descent said: “Emotionally [caregiving] it’s really heavy”. Adam also stated: “It [caregiving] is just overwhelming”. Thus, while the majority of TCEs in this study explained that they are content about providing caregiving services, there was a difference of opinion among a few Syrian and African origin participants who depicted that long-distance care leads to feeling overwhelmed, emotionally drained, and frustrated.The results disclose that there are similarities and differences in the employment experiences of visible minority TCEs. In the interviews that took place before the pandemic, many participants in this study from all four ethnicities mentioned that at some point, they did jobs that did not utilize their skills and could even be categorized as demeaning in their culture. However, they continued to do it such that they could earn a living, which could help support their care-recipients. For instance, Adam stated: “If you have a job, you have to suck up something to stay in the job, because you have to take care of people”. Ammar, a TCE of Syrian roots also stated: “You just need some income, so you accept anything you get offered”. Mohammed, another participant with a Syrian background supported this concept and added: “Back home we had good jobs, respectful jobs. Here we come and we work demeaning jobs that no one else wants to work because we do not know language”. Moreover, analogous patterns were seen amongst participants even after COVID-19. Helena mentioned: “I work in any job I get […] because of the language barrier I am not able to get better jobs”. Sebastian, a South American origin TCE also explained: “I am a custodian at [redacted] […] I was a lawyer in Colombia […] finding a job wasn’t very hard. The hard part was accepting it psychologically”. Therefore, many TCEs of visible minorities residing in London unveiled that language barriers, along with the immediate need to make money for caregiving, cause them to accept employment that is not completely desirable to them.Furthermore, COVID-19 had a significant impact on the employment experiences of Pakistani, Syrian, African, and South American descent TCEs. Many interviewees reported they would have taken on more work shifts and/or another job to ease the financial burden linked with providing international care. However, the pandemic resulted in fewer work opportunities, which hindered their ability to sustain their income. For instance, Jemmy declared: “If it wasn’t for COVID I would take another job”. Anna, a TCE from a South American background, stated: “Due to the pandemic, work has slowed down and that has reduced our income, so we’ve had to reduce the financial support that we give to this family member”. Likewise, L.A, an African descent interviewee, communicated: “I mean the COVID situation has impacted not just of course the entire world, but me personally […] they [workplace] had to let me go and um, that definitely impacted on my income”. Henceforth, COVID-19 affected the employment experience of TCEs in this study as they reported that there was less work which ultimately reduced their income and added a barrier to their financial caregiving duties.In contrast, there were a few TCEs of African origin that had diverging experiences, as they shed light on an increase in work demand after COVID-19. Nina declared: “I would say I’m working more. Although things started off slowly, but once I got into it, there’s just a lot to do”. Correspondingly, Lulu, another participant from an African background, reported: “I was more worried about not working enough, but then I ended up working more hours because I work in a shelter so we’re more like essential service”. Similarly, Cofi, another TCE of African ethnicity, who was working as a teacher, explained that he began working more post COVID. Specifically, Cofi stated: “Preparing for classes, it increased, I made more time for that”. Hence, even though most of the TCEs of visible minority revealed that COVID-19 decreased their work and income, there were a few respondents of African descent who disclosed that they faced a higher employment load after the pandemic due to the type of work they were doing.The results of this study acknowledge that there are four common coping strategies that Pakistani, Syrian, African, and South American origin TCEs residing in London engaged in to maintain their well-being before and after the pandemic. Visible minority TCEs across all four cohorts expressed that they tried to keep themselves busy and distracted to alleviate negative mental health symptoms. In an interview that occurred prior to the pandemic, Mohamed stated: “When I work, I forget all my burdens. It is when I do not work, that is when my mind explodes as I think about those close to me and those far away. (laughs) I get frustrated”. Similar patterns were also observed in interviews that occurred post pandemic. Luis, a TCE with South American ethnicity, said: “The ideal is to keep your mind occupied, so you don’t have bad thoughts, or get depressed or to get emotionally affected”. Sabrina also supported this idea and revealed: “I tried to keep myself busy […] to distract myself from all worries”. These statements reinforce the notion that being occupied has remained a coping mechanism for TCEs of visible minorities both before and after the pandemic.Furthermore, many TCEs across all the visible minority backgrounds in this study also illustrated that being connected with their spirituality and being involved in religious practices was a source of relief for them. Before COVID-19, Ammar announced: “I wouldn’t say it [coping] was easy, but God helps”. This ideology was prevalent amongst participants after COVID-19 as well. Anna reported: “The spiritual part also helps a lot. It helps in that part, that mental strength so that you can be strong when you must face ‘X’ situation”. L.A additionally established: “Praying [helps], and you know finding solace in the promises that […] I have with God”. Therefore, praying and remaining close to their respective faith became a coping mechanism to mitigate stressful situations of caregiving and employment prior to and after COVID-19.Participants from this research also brought to light that having a strong support system from family and friends aids in managing stress levels. Martina, a TCE of South American ethnicity stated: “My mother has helped me a lot, because right, she’s my mom but she’s also my friend”. Likewise, L.A voiced: “We paid a lot of attention to the family unit […] we spend a lot of time now on Zoom and [chuckles] WhatsApp calls with family and friends”. Fernanda, another participant of South American ethnicity, also expressed: “I just connect with my friends […] going with my family or playing with my nieces that kind of helps me […] step outside of that kind of um stressors”. Hence, many visible minority respondents found social support from their family and friends to better manage their well-being while engaging in transnational care and paid employment.The final commonality in relation to coping strategies amongst the participants in this study was exercising and meditation both before and after COVID-19. Interviewees shed light on how staying active and instilling a routine exercise plan is a crucial factor to combat the pressures associated with personal and professional lives. For example, in an interview that occurred prior to the pandemic, Lulu voiced how working out has been a coping strategy for her. She stated: “I enjoy going to the gym. I [would] live at the gym if I could”. Nogi also mentioned: “I do meditation […] which is good”. Correspondingly, after COVID-19, there were analogous patterns noted as L.A spoke: “I actually started doing a lot more exercises [...] that helped”. Similarly, Alexandra, a TCE of South American heritage further supported this notion and expressed: “Having an exercise routine [helps] […] sometimes when I’m having a very emotional time and I’m feeling down, to put it that way, I try meditating a lot”. Therefore, the data of this research depict that exercising and meditation is an important tactic that TCEs implement in their lives to support both their mental and physical health.The findings of this research indicated deskilling of the employed immigrants that are living in London and providing transnational care. It is pivotal to note that the inclusion criteria of this study included being employed or “volunteering”, as the lack of Canadian human capital or work experience and language barriers are among the largest barriers to gaining employment in Canada ,46,47. AThis research illustrated that amidst the financial challenges associated with transnational care, most participants from all four visible minority groups in this study still reported feeling content and a sense of reward for being able to provide caregiving to their family and friends. Although not specific to transnational care, the findings of this study are consistent with the results of research by Henriksson et al.  that aimAnother commonality that was noted among many of the Pakistani, Syrian, African, and South American descent TCEs in this study was that they wished they could provide more caregiving. Participants explained that they hope to engage in more financial caregiving in the future but there were feelings of regret as TCEs disclosed that they felt they could be doing more to give back to their relatives and friends in their home nation. This is similar to the results of an article by Baldock  that expMoreover, there were some differences observed regarding the feelings of TCEs associated with transnational care as a few interviewees in this study from Syrian and African origin voiced that caregiving can be emotionally draining and overwhelming. This is consistent with a paper by Lyeo and Williams  that aimThe findings of this research also determined that visible minority TCEs work in occupations that are not desirable to them out of the necessity of providing care and meeting their needs in Canada. Many participants discussed that the language barrier significantly impacts their employment and due to limited proficiency, they end up accepting a job that is low-paying or even demeaning for them. Existing research by Farrell et al.  and CorbIn addition, the current study sheds light on how many visible minority TCEs of Pakistani, Syrian, African, and South American descent described that there were fewer working opportunities and decreased income because of COVID-19, which hindered their ability to do more financial caregiving. Comparatively, research by Crayne  and BartFurthermore, while most of the visible minority TCEs in this research reported that there were fewer work opportunities and less income during the pandemic, there were a few participants of African descent who reported the opposite and revealed that they observed an increase in work demand after COVID-19. Nevertheless, it is crucial to note that some of these respondents were working in essential services after the pandemic. This is comparable to the findings of Bell et al.  who inveRespondents from all the visible minority groups in this study voiced that one of the main coping strategies that they implemented in their lives to improve their well-being both before and after the pandemic was keeping busy. Visible minority TCEs of Pakistani, Syrian, African, and South American origin specifically mentioned that they distracted themselves with work and tried to keep their mind occupied to prevent negative thoughts and feelings. A study by Williams et al.  also empThe interviewees in the current study also elucidated that they mitigated the stress from their dual responsibilities of care and work by staying in touch with their religious practices and spirituality. Existing scholarly research by Xavier and Esperandio , Britt eFurthermore, the visible minority interviewees in this research highlighted that staying in contact with their family and friends helped them better manage their well-being. The TCEs from all four ethnicities expressed that talking with their loved ones on video and phones allowed them to feel comfort and ease. This is analogous to the research by Yang et al.  that exaThe last commonality among the TCEs of Pakistani, Syrian, African, and South American descent in this paper regarding coping mechanisms was staying active. Most of the visible minority TCEs from all backgrounds affirmed meditation and exercise was important tactic that inhibited stressful thoughts associated with their employment and caregiving services. Equivalently, a descriptive study by Hamed et al.  reportedThe scope of this research contains some limitations. As with most qualitative studies, this study may not be generalizable to Pakistani, Syrian, African, and South American origin TCEs beyond the respondents that were recruited for this research. This is also because the experiences of TCEs in this study are specific to a particular time in an urban area like London. Hence, the results may not be representative of TCEs in other sub-urban or rural settings elsewhere. In addition, it should be noted that most participants disclosed caring for their parents with chronic health conditions such as diabetes, and other immediate and extended family members. However, there was a lack of understanding of the experiences of TCEs who care for loved ones with a physical disability; thus, the finding of this research may not be illustrative of the circumstances of other visible minority TCEs. This research used qualitative measures to scrutinize the tacit lived experiences of TCEs from various ethnicities. Future studies may use quantitative methods to obtain a more precise understanding of transnational caregiving in the times after the pandemic. Future directions should also be geared towards understanding the impact of deskilling on TCEs and their ability to send money back home as well as caring for their family in the country of relocation.As a result of immigration, the Canadian labor force grows yearly as immigrants pay taxes and spend on goods, housing, and transportation ,87. Immi


Autism refers to a neurodevelopmental condition with characteristic impairments in social interaction and communication, restrictive and repetitive behaviors, as well as difficulties in sensory information processing and daily living skills. Even though symptoms persist from early childhood throughout the lifespan and often require long-term support, there is a lack of mental health services that sufficiently meet the needs of autistic adults. Previous evidence suggested individual, professional and structural barriers to healthcare for autistic adults. Here, using a peer research approach, we sought to systematically investigate barriers and needs in mental healthcare of autistic adults in Germany at the three relevant levels  and from three relevant perspectives , in order to obtain specific recommendations for optimized healthcare.n = 15) and focus groups with relatives/partners (n = 12), and healthcare providers of several professions (n = 15). Data analysis was performed using the codebook approach of thematic analysis.Maximum variation sampling was used to account for the complexity of the research field. Semi-structured, open-ended interviews were conducted with autistic adults  lack of knowledge about autism, (ii) a need for increased participation/involvement, (iii) consideration of autism-specific needs in treatment, (iv) lack of services, (v) limited access to services, and (vi) improvement of stakeholder collaboration. Themes were similarly reported across participants, emphasizing dissatisfaction in all stakeholders.We identified major barriers to mental healthcare for autistic adults in Germany that affect autistic adults, but are also of concern to relatives and healthcare providers. Our results point to specific and generic areas for improvement, independent of stakeholder perspectives, which could guide future development of needs- and evidence-based services, recommendations and guidelines of mental healthcare for people with autism across the lifespan.https://osf.io/5x8pg).This study protocol was preregistered at the Open Science Framework (The online version contains supplementary material available at 10.1186/s12888-023-05026-x. Autism spectrum disorder (ASD) is a pervasive neurodevelopmental disorder with a global prevalence of approximately 1% . PreviouThis evidence emphasizes the need to develop more effective healthcare structures that make best use of scarce societal resources and to investigate the mechanisms underlying ineffective healthcare of autistics adults. Internationally, some barriers have already been suggested, which hinder adequate and effective healthcare for autistic adults. For the U.S., for example, Nicolaidis and colleagues  suggesteBarrierfreeASD  I haven’t had a single teaching unit in my whole education on this, which is from my current perspective, absolutely devastating […]. (B4)Participants described that healthcare providers frequently refused treatment based on lack of knowledge. For example, responses included “oh, you are autistic, no, I don’t have any experience with that, better contact someone else” . Another autistic adult reported that “with Asperger’s and Attention deficit hyperactivity disorder [ADHD] in particular, I found that I had to make a lot of phone calls to find a therapist. I think nineteen out of twenty said, ‘we have no idea about that’” (ibew15). Autistic adults reported experiences like this and the subsequent burden. In addition, knowledge gaps were suggested as a reason for the high rate of misdiagnosis and resulting mistreatment of autistic adults. This was a prominent theme across all three stakeholder groups, but autistic adults and family/partners in particular reported stories of misdiagnosis, years of mistreatment, and resulting negative impact on a personal and emotional level. A man described his autistic wife’s diagnostic path:[…] my wife was also diagnosed with all kinds of things in life: schizophrenia, depression, and so on. So almost every diagnosis, but no one had the idea that it could be autism and that’s just a pity that someone wastes her youth and her childhood. (iii) research on ASD in adulthood and in women. Participants demanded better screening and diagnostic tools for adults in general and especially for women, as it would allow sooner diagnoses and “filtering of waiting lists” . Furthermore, “girls fall through the cracks”  in mental healthcare because characterization and manifestations of symptoms often differ in women and they tend to be more adapted than male autistic persons:Third, all three groups emphasized the need of further […] I think this is very regrettable. And I know many young women who were diagnosed in adulthood. Before that, they had been diagnosed with borderline or something else. I think that’s very bad for the young women. And I would like to see that, in general, neurodiversity […] is taken into account when it comes to burnout and depression.” .In addition, healthcare providers identified the lack of valid measurements for severity assessment to be another field to be researched: “severity is poorly operationalized and therefore it is not possible to say in a very general way what the individual person needs in terms of support” .The theme “a need for increased participation/ involvement” refers to both the autistic adults and the relatives which should become more involved and participate in different areas of the healthcare system, according to most participants. This theme is classified at both the individual and professional level see Fig. .On the one hand, autistic adults and relatives postulated to become better involved in examinations and treatment in general. They demanded to be directly involved in decisions and to be informed about fundamental issues, such as medication, diagnoses and interventions and recommended treatment to be as transparent as possible.Moreover, autistic adults recommended to systematically involve autistic adults into knowledge dissemination and research on ASD:What is very important to me is bringing education about autism into the broad field. […] This is about medicine, care, and that must be brought into the broad area, and definitely in participation with autistic people. Only from the view inside it can be explained what autism is. In addition, all groups highlighted that “it is important trying to have a stronger exchange with family members” . Support of relatives and partners, e.g., in planning and/ or accompanying appointments or activities of daily living was essential according to the participants. Without this support, many autistic adults would not be able to participate in the mental healthcare system. Nevertheless, they acknowledged barriers in involvement of relatives and demanded to “take a supporting person with you without being ridiculed” . Healthcare providers described that relatives also have a great impact on diagnostics and therapy, but are rarely involved at the moment:And the family is not involved, it is not even implemented by the insurance company. There are always a few sessions with relatives, but the family is not really involved. And I also find that totally difficult when adults from the spectrum then end up in such an ordinary behavioral therapy. This theme describes challenges in accessing or participating healthcare services due to specific characteristics of autism itself. It addresses all relevant levels and was mentioned by all of the three stakeholder groups but was predominantly represented in the group of autistic adults. Following subthemes were identified in the data: (i) difficulties in executive functions and self-management, (ii) need for consistency and transparency, (iii) autism-specific sensory sensitivities, (iv) difficulties in verbal and nonverbal communication.(i) difficulties in executive functions and self-management on healthcare seeking behaviors affecting access to healthcare services, for example, when “completing very simple paperwork” , adhering to medication, navigating in the healthcare system, or planning/ attending appointments:Participants reported So, something like making an appointment, but also attending the appointment if I don’t know the place yet. That means estimating how long it will take me to get there, even with public transportation, because I don’t drive a car. So to organize something like that. Or, in general, not to take on too much for one day and to estimate how long I have to plan for this appointment. (ii) need for consistency and transparency in treatment and healthcare settings was emphasized. “New situations are difficult” , including changes in staff, appointments or environment. An autistic adult described:Furthermore, the The biggest challenge is when I go to a new physician where I don’t know the environment, the practice, everything. To get used to it is a big challenge for me, for which there is not really a solution apart from doing it. Autistic adults said that it would be difficult not to be involved in treatment and not to obtain “background information”, for example about physical examinations . Some said it was helpful if providers “explained [treatment] step by step”, if they involved in medication adjustments, and informed about diagnoses.(iii) autism-specific sensory sensitivities on seeking or receiving mental healthcare for autistic adults. Healthcare facilities would cause stress and overload because they are not tailored to autistic peoples’ needs. For example, it was described that “physical contact is unpleasant” , “smells can be very disturbing and irritating” , “noises are very unpleasant and hardly bearable” , “sensitivity to light leads to distraction” , and overall “chaos reigns in the practices” . In addition, difficulties in body awareness and pain perception were mentioned:Most participants highlighted the impact of On the one hand, being very sensitive during examinations and being unable to handle and endure a lot of situations, but on the other hand, not always noticing when there is pain or symptoms. In any case, these are also major barriers. (iv) difficulties in verbal and nonverbal communication with medical staff also were a prominent topic, such as difficulties in making appointments by phone or miscommunications with healthcare providers during treatment or examinations. Autistic adults reported to struggle in following spoken instructions or answering open-ended questions. For example, an autistic participant described the following interaction with a physician:Autism-related “‘Where exactly does it hurt?’” - I always feel very stupid when I can’t answer that. It would be better to ask, “Is this a pain in the whole abdomen or specifically in one spot?“ Then it would be easier for me to understand that it may just hurt in the whole abdomen and that this is okay as a description. In addition, autistic participants described problems in communicating symptoms because “they like to be on the matter level and tend to communicate information and the emotional stuff doesn’t get carried along” . This would cause that “many symptoms are not even recognized properly or are dismissed as incidental […]” . Autistic adults also described difficulties with typically very brief clinical appointments: “I feel rushed under time pressure and then I forget a lot of what I actually wanted to discuss. The appointments are often too short” .As mentioned before, this theme was predominately represented in the group of autistic adults. In general, they emphasized individualization of treatment of autistic adults as a facilitating factor to cross barriers in these autism-related difficulties.All stakeholder groups commonly agreed upon a lack of mental healthcare services for adults with autism: “The whole system is not intended for autistic adults. It seems as autism is seen as a children’s disease […]” . Especially “the high-functioning are not acknowledged or are not seen as a relevant group” . Following subthemes were identified, referring to the professional and structural level: (i) transition, (ii) diagnostic services, (iii) psychotherapeutic services, (iv) inpatient services, (v) low-threshold services, (vi) assistance services.(i) transition from youth into adulthood. Mental healthcare would be provided during childhood and adolescence, but collapses once autistic individuals reach adulthood. An autistic adult reported:Participants criticized the lack of adequate support systems for The main problem is that the areas are separated from each other. The area of child and adolescent psychiatry and the area of adult psychiatry, not only in psychiatry, but also in medical care. Then you have to go from one to the other and are and treated completely differently. Participants demanded transitioning being adjusted in regard to the development of the individual rather than to the age and to “install a support system at least temporarily” .(ii) diagnostic services for adults seeking an ASD diagnosis as expressed by long waiting times for obtaining diagnostic assessment:Another prominent topic, particularly discussed by healthcare providers, was limited In [city name], healthcare is, I would say horrible, waiting times at the [name of hospital] for the autism consultation two and a half years, only a handful psychiatrists in practice, completely overloaded and waiting times about three years. This was explained by a limited amount and limited capacity of specialized services: “there are not enough diagnostic and therapeutic centers at all” , especially in rural areas. Furthermore, it was expressed that psychometrically valid and specific screening and diagnostic instruments for autistic adults, also suitable for use in primary care, need to be developed which could shorten or optimize the diagnostic process.(iii) psychotherapeutic services. Participants also described limited and scattered specialized services ). Autistic adults and relatives remarked to put up with long-distance therapy because there were no services close to their residence or waiting lists were at maximum capacity. Reported waiting times for psychotherapy ranged from nine months to one and a half years. Even when successfully accessed therapy, a few autistic adults highlighted their need for individually tailored support and personalized treatment: “The needs are very individual. And even in the high-functioning area, if you compare two people, then the needs or the level of suffering, etc. and the living situation might be very different .”After ASD diagnosis, participants reported “being left completely alone”  with insufficient availability of subsequent (iv) inpatient services, including psychiatric or rehabilitation services, all stakeholder groups agreed upon the need for increased specialized and personalized services. “In inpatient healthcare of people with autism spectrum disorders, […] there are very, very few offers” , and “shared rooms in hospital are just not acceptable. I think if you are autistic, you should have the opportunity, at least if it is possible, to get a single room” .With respect to (v) low-threshold services, suggesting, for example, to expand self-help groups for autistic adults as well as for relatives:Furthermore, all groups of stakeholders criticized a lack of Very little attention is paid to the fact that not only the affected person is impacted, but also a large number of people around them. I think it would be very, very good and very important if more counselling were created, for example get relatives informed or they can also experience support for themselves. Relatives/ partners described stress and burden due to the support of the autistic relative. Therefore, they “would really like to have support also as a relative. That you are taken by the hand in order to understand conflicts better, to accept peculiarities better and to spend a good and stress-free life together with the affected person” .Autistic adults highlighted the need for further low-threshold services, such as music, sports, or occupational therapy, specialized for autistic adults or low-threshold crisis counselling: “there is only one telephone emergency service for autistic people in Germany and that is a voluntary one. And that’s also relatively small given such a high suicide prevalence” . Counselling services for different purposes were mentioned. Healthcare providers described the need especially for social therapeutic services in particular: “because often it’s not about psychotherapy or processing the experiences from the past, but supporting, in order to somehow cope with the daily challenges, for Asperger’s, […] with the social challenges” . The need for peer counseling and information about existing services was also emphasized. Lastly, the lack of services for those who are not able to get manifest therapy or are waiting for it was expressed:I think a larger network of counselling centers would be helpful, because I think that many affected people, many relatives experience greater barriers finding information at a clinic, a therapy center, than going to a counselling center or to a regulars’ table and seeking advice and exchange there. So, I think that would be a practical way to facilitate initial contact. (vi) assistance services for autistic adults without ID “because autism doesn’t mean therapy will be done and then everything will be okay again” . It was emphasized that case management  needs to be implemented to relieve the burden on autistic adults, but also on relatives who often provide care and assistance. An autistic adult responded to the question how relatives and partners could be supported: “others who provide required assistance. In other words, assistance for autistic people across the whole lifespan. In my opinion, even a high-functioning autistic person like me needs some kind of lifelong assistance service” .Furthermore, participants across all groups highlighted the lack of Not only the lack of services was described, but also barriers in accessing the available services were highlighted in most interviews and focus groups. Two subthemes were identified in the data, which are loading on the professional and structural level: (i) lack of transparency about healthcare services, (ii) funding.(i) lack of transparency about healthcare services was described. Neither autistic adults nor relatives or healthcare providers were fully informed about available services. A healthcare provider described: “That’s the problem, caregivers don’t have an overview of available services, including myself. It’s not easy to find one’s way in this network, but that’s actually the most important thing” . For example, patients often do not receive adequate care after diagnosis and have to obtain information on their own or with the support of relatives. Those who found services reported to have problems with the complex application process that could not be managed without external support. Healthcare providers reported regularly assisting autistic people with application forms, even though they are not responsible to provide assistance services. Furthermore, autistic adults reported that, based on the division of healthcare services among different social systems, navigating the healthcare system would be difficult:On the one hand, the Access to services is so massively divided among the various social systems by law that it is incredibly difficult for me to even find out who is responsible for me and from whom I have to apply for what. Yes, the fact that the individual social systems are always trying to pass the buck to each other is also not conducive. (ii) funding of autism therapy is not provided by health insurance. An autistic adult shared her opinion on this topic:In relation to this, it was criticized that Because at the moment autism therapy and psychotherapy are separated from each other. And a classic autism therapy is also not funded by the health insurance, because with health insurance financing, this healing aspect is always included, which is a wrong approach, in my opinion. Regular psychotherapy, on the other hand, is not funded by health insurance when only ASD is diagnosed. To be approved for psychotherapy, a mental disorder such as depression or anxiety disorder must be present. A healthcare provider mentioned “almost three-quarters have a relevant co-morbidity, so the largest group finds access”  to psychotherapeutic services, but it would be a problem anyway. In addition, it was criticized that statutory health insurance companies do not enable rapid support in case of crisis situations.This theme includes the collaboration of relevant stakeholders in the healthcare of autistic adults on a professional and structural level, which were mentioned to be healthcare providers from various professions. Primarily healthcare providers, but also few autistic adults emphasized the need for collaboration between different groups of professions and “multi-professional teams work[ing] with affected people” . Many participants described that this could allow for simplification of healthcare processes, as all providers can be on the same level of knowledge about the patient - as long as the autistic adult consents. Some participants mentioned that collaboration would also facilitate the transition between pediatric and adult healthcare providers:That the new doctor can also call the old doctor if there are any questions until the autistic person is really back at home with the new one, where he or she is again in safe hands during this transition phase. Few healthcare providers also highlighted that exchange with other providers also contributes to increase knowledge about autism: “there should actually be more networking and more exchange of experiences” .To our knowledge, this is the first comprehensive investigation including the perspectives of autistic adults, relatives and healthcare providers on barriers and needs at the individual, professional and structural levels of mental healthcare for autistic adults without ID. We identified six major barriers to mental healthcare for autistic adults in Germany, which primarily affect autistic adults but are also of concern for relatives and healthcare providers: (i) lack of knowledge about autism, (ii) a need for increased participation/involvement, (iii) consideration of autism-specific needs in treatment, (iv) lack of services, (v) limited access to services, and (vi) improvement of stakeholder collaboration. The majority of the themes are in line with existing literature, focusing on general healthcare in the U.S ., thus, The results of this study partially replicated the three previously proposed levels of barriers see Fig. . In addiThe identified barriers and stakeholder groups may apply for both national and international mental healthcare of autistic adults, since ubiquitous barriers seem to exist for adults with autism across countries and healthcare systems. This is supported by the fact that our findings are in line with previous evidence from various countries, e.g. United States , 30, 50,Policy-makers need to increase the availability of formal healthcare services and, in turn reduce healthcare inequalities by providing the necessary resources. For example, diagnostic and psychotherapeutic services need to be expanded in both urban and rural areas. Transitional periods  need improved coordination. In general, healthcare facilities and processes should be more accessible for autistic adults, e.g. communication pathways. Most important, transfer of knowledge about autism needs to take place in the community to reduce stigma of autistic individuals, to train healthcare providers and inform about skills and behaviors necessary to provide respectful and adequate mental healthcare for autistic adults. In light of the massive burden autism represents for autistic individuals, relatives and society, research on ASD  and its funding needs improvement. Education, research, and treatment should be addressed through the participation and collaboration of relevant stakeholders. In autistic individuals, symptom expression and symptom severity vary both inter- and intrapersonally, so mental healthcare has to be flexible and tailored to the state of the condition. Findings indicate that individualized and personalized healthcare would provide best practice for autistic individuals , 54.A major strength of the current study is the participatory approach, which ensured involvement of autistic peer researchers and relatives as well as service providers at all stages. Participation, which we had identified as important theme, in the current study was further maximized by offering several methodological participation modes to autistic adults . The use of a purposeful, maximum variation sampling strategy allowed to obtain rich, comprehensive data from a wide range of participants. However, as with most qualitative studies, the sample does not represent a random selected sample of population and the sample size is limited. Moreover, it was not possible to recruit participants from some federal states (e.g. Brandenburg, Saarland; see Table BarrierfreeASD project, a follow-up large-scale online survey will be conducted to collect quantitative data in larger samples and provide a representative overview of the healthcare situation in Germany [As manifestation of symptoms, severity, and secondary impairments vary widely between autistic individuals, further research should focus on the development of an individualized, needs- and evidence-based, severity-adjusted healthcare model. To allow an appropriate scaling of this services reliable epidemiological data from Germany will be needed . To this Germany . This miBelow is the link to the electronic supplementary material.Supplementary Material 1 Table S1 Sample distribution by region and federal state


Diagnostic excellence is based on six fundamental principles of healthcare quality proposed by the Institute of Medicine in 2001, which state that diagnoses must be safe, effective, patient‐centered, timely, efficient, and equitable. William Osler, “medicine is a science of uncertainty and the art of probability.” This highlights the creative artistic aspect of medicine, as well as the fact that diagnosis is not always certain or even correct.The intellectual task of diagnosis performed by medical professionals is a critical decision‐making process that is vital for determining a patient's treatment and prognosis. Therefore, diagnostics play a pivotal role in healthcare, particularly in primary care, where patients often present with undifferentiated symptoms that the clinician sorts out and accurately diagnoses. According to Since the publication of “To err is human” in 1999, and more recently in 2015 improving diagnosis in healthcare, the potential for error and need to improve diagnostic safety has been increasingly recognized.First, diagnostic excellence has the foundational principles of patient‐centeredness and patient engagement, which are important pillars of primary healthcare. A truly “patient‐centered diagnosis” must be based on excellent communication that respects the patient's needs, values, opinions about the disease, and life context. This is precisely the principle of patient‐centeredness and continuity of care, which is highly prioritized by primary care. Furthermore, only continuous dialogue, follow‐up conversations, and monitoring between physicians and patients can address diagnostic uncertainty. To be effective, patients must be engaged in coproducing the diagnosis by presenting them to their clinicians in a timely manner, accurately describing their symptoms, recounting their time course, engaging in shared decision‐making regarding diagnostic possibilities and follow‐up, and adhering to monitoring and follow‐up plans.Second, the synergy between the four core functions (4Cs) of primary care and the comprehensiveness inherent in diagnostic excellence is exceptionally high. The 4Cs of primary care essential for quality healthcare include first contact, comprehensiveness, coordination, and continuity. Its achievement not only improves health outcomes for patients but also improves inequalities and cost‐effectiveness.Furthermore, diagnostic excellence encompasses diagnostic equity.Donald M. Berwick states that “diagnostic excellence means that the needs of the patient, for solace and relief, come first.”All authors have access to the information utilized and participated in the preparation of this manuscript.None.All authors have provided their consent for publication.


The later decades of the 20th century saw dramatic changes in sexual attitudes and behaviour in Britain: rates of divorce and remarriage increased; premarital sex and illegitimacy became more common, even as the pill and legal abortion opened up new reproductive choices; and following on from the decriminalisation of homosex, liberation movements began to celebrate gay lives. These shifts generated new possibilities, but often entailed much inner turmoil. The same period witnessed an unprecedented flourishing of professional and popular psychological expertise. Influential social and cultural theorists have argued that the intertwined rise of “permissiveness” and therapeutic culture caused an important shift in the ethical dimensions of modern life, in which citizens and subjects came to idolise self-realisation over the public good.This article uses women’s magazine problem pages, exploring the role of advice columnists on and off the page, to examine the intersections of “permissiveness” and the psychologisation of everyday life. Millions looked to agony aunts in mass-market women’s magazines to help them negotiate new emotional and sexual worlds. As purveyors of counsel, but not  formally trained counsellors, magazine advisors worked with the new languages and concepts of psychological expertise and disseminated them to avid readers.Across this period, problem pages demonstrated greater openness towards sex and displacement of morality from external standards to the individual. However, advisors also continued to emphasise self-control and responsibility, and to provide practical guidance that took at best a superficially psychological veneer. These trends were underpinned by a model of sex as an essential part of loving, stable relationships, and the (largely unexpressed) notion that such relationships were essential to social functioning. In the woman’s world of the magazine, before and beyond the 1980s, the problem page does not show the rise of individualism or the pursuit of pleasure above all else. Woman’s Own problem page  of different ages and life stages. Out of the journalistic necessity of providing a good read, each week the page hosted a mixed constituency of people, including adolescents, housewives and older women, and problems relating to friendship, romance, sex, loneliness, ageing and so on. Letters asked for practical information, guidance on moral quandaries or help with interpersonal relationships, and prompted the advice columnist to adopt in turn the roles of human rolodex, trusted intermediary or final court of appeal. As the place where readers spilled out their most intimate troubles, the problem page acted as a ‘social barometer’ of ‘changing mores’—making such columns an invaluable resource for historians of sex, love, relationships and emotions .Woman’s Own is a particularly good vehicle for such explorations. Established in 1932, by the mid-1960s Woman’s Own was the second most successful women’s weekly title (after Woman), with circulation of 2.1 million copies per issue. It still held this position in the market in the mid-1980s, despite the decline to 1.1 million sales per week  sexual roles—explains both the practical orientation of guidance, and its emphasis on communication. Advisors perceived an important part of their role as to provide information for those too shy to seek outside advice, too embarrassed to talk their partner about sex or simply unsure where to find the relevant support , 134–141As well as providing information, advisors consistently and emphatically promoted better communication as the main way to resolve sexual problems in relationships. This basic message remained the same over the decades, although framed in different languages and encountered in different contexts. It might mean making active effort to ‘conquer’ shyness and talk to the doctor or another authority about any help required . AdvisorBeyond seeking outside help, couples had to learn to put their adult relationship at the centre of their lives, and to build an exclusive bond of mutual trust and respect . If trusAs premarital sex, cohabitation, divorce and remarriages became more common, those unhappy or anxious about their sex lives received similar advice. The young woman who could only reach orgasm through masturbation and not penetrative sex, and consequently worried that she would ‘never have a happy sex life’ with her fiancé, was told to remember that ‘when there are two people involved, and not just you reacting to you, there has to be a great deal of communication about what takes you towards satisfaction and what doesn’t’ . In 1974A decade later, responding to a woman who felt guilty over her part in her lover’s divorce, consistently recommend such services; when they did, this advice rarely followed on from an explicitly psychological explanation of the correspondent’s problem; and, out of a range of possible therapeutic options , marriage guidance counsellors and BACs were their default options. How can we explain this erratic and restricted engagement with psychological culture?The evidence of the problem page perhaps presents us with a confusing picture of the psychologisation of everyday life, even if we broaden our understanding of what “the psychological” meant in this period. Advice columnists were not opposed to sexual or other counselling services, and sometimes enthusiastically promoted specific organisations. However, they did not Advisors’ pragmatism was partly an outcome of the restrictions imposed by format. The problem page combined personalised counsel for correspondents with informative diversion for other readers, operating as a ‘semi-public, semi-private’ realm , 108. AdWoman’s agony aunt between 1978 and 1993, explained that the ‘agony aunt is a journalist, and one must never forget that’. She insisted that readers of the page did not want the ‘waffle’ that counsellors, focusing on the problem rather than the reader, were likely to provide. Suzie Hayman (2018), agony aunt for Essentials between 1988 and 1993 and and then Woman’s Own from 1993 to 2000, recalled one problem page in the early 2000s that appeared under a celebrity’s name, but ‘the letters were clearly being written by a very good psychotherapist, but in psychotherapy-speak. I could read them and say, “Well, that’s really good advice”, but I don’t think, you know, the, the actual, the readers, found them much fun, they were, they were far too dense’. This anecdote underscores the insistence of Anna Woman’s agony aunt between 1974 and 1978, that ‘the primary qualification for writing about people’s difficulties, is the ability to communicate’. Any other qualifications, ‘however esoteric or grand or formal they may be, only obtain in mass media if you have the other qualification, which the ability to use words, the ability to move terms around, the ability to communicate’. The demands of good copy held sway.The limitations of the problem page format leads us back to the most important fact: magazine advisors provided counsel, but they were not counsellors. In oral history interviews, former agony aunts emphasised their status as journalists. Virginia Mizz, launched in 1985, introduced advice columnist Tricia Kreitman as ‘a qualified psychologist who specialises in sexual and emotional problems. She’s had training with the Family Planning Association and she taught managers and employers how to get on together’ , her son Jay seemed almost to relive her emotional commitment, becoming stuck on a particular phrase: 'she did get emotionally involved in some of them. She got very emotionally involved in some of them, […] but she did get emotionally involved in them, and, and, that’s right, she did get emotionally involved in them .In her earlier career, Hayman worked at the FPA, where she came into contact with Ann Lovell, a deputy admin manager at the BAC. After an experience of marriage guidance counselling that she found positive, although the marriage did not last, Lovell had taken a counselling course at Middlesex Polytechnic. Hayman suggested Lovell for a post as one of Virginia Ironside’s behind-the-scenes assistants at Just Seventeen as a freelance writer and became the magazine’s agony uncle after he was asked to reply to some letters from girls with boyfriend problems. He stayed in the role from 1987 to 2004, but initially found the work ‘anxious-making’ because ‘I didn’t feel like I had a qualification. I wasn’t a psychotherapist, I wasn’t a doctor, I, you know, I was a journalist who wrote a lot of features on boyfriends’. This prompted him to ‘do a lot of research and get involved with the Brook Advisory Service, and all sorts of, different charities and agencies that dealt with teenagers, to kind of get as much input and information and kind of right, er, right points of view that I could get’. He ‘actually then started writing books about it, you know, because I’d kind of caught up and done the homework’ (These relationships with counselling organisations sometimes formed a virtuous circle. Nick Fisher started out on omework’ .Mizz when, prior to launch, the editorial team asked the FPA to recommend someone. At the magazine, she ended up working closely with the BAC, and went on to become its Chair (These relationships could run in either direction. Tricia Kreitman’s first degree was in psychology and then, after stints as the head of a local health education unit and running a computer training company with her husband, she took a postgraduate medical diploma in psychosexual therapy. Midway through the course, she was offered the post of advice columnist on ts Chair . Meanwhits Chair .Essentials by-line stressed her links to the FPA because ‘it’s the professionalism, it’s actually saying somebody is coming from a background with some knowledge, some information, you know, some authority, as it were’. Yet at precisely the same moment in time, newspaper problem pages were embracing a more ‘hedonistic’ agenda of ‘sexualised entertainment’ and downplaying their educative role (It is clear that, in the last decades of the 20th century, journalists working on problem pages were more likely to pursue associations with counselling and counselling organisations, whether as formal training or in terms of seeking information and advice that they could pass on to correspondents. This applied to advice columnists on magazines and newspapers. However, this expertise did not filter onto the page in the same way in each medium. In the words of ive role , 54, 58.ive role 250 that Woman, additional to that paper’s regular page headed by ‘Evelyn Home’.In part, the difference is down to commercial pressures. In earlier decades, the best-known advice columnists might work on either newspapers or magazines, and move between the two. For example, between 1967 and 1972, Marjorie Proops offered an advice column in The Sun. Today, it hosts the only behind-the-scenes answering service in the British press, surviving the last equivalent department on a women’s magazine by nearly 30 years. Woman’s Own in explaining why she perceives this service as ‘sacrosanct’. She sees herself as ‘bringing the values of the sixties, seventies and eighties, through to the present day, and I’m the only one who’s been able to sort of fight to achieve that’. Those values extend beyond the support she provides to readers. In 1999, when Ann Lovell’s daughter was dying of cystic fibrosis and she could not cope with responding to letters on Bella, Sanders offered the support of her own team of assistants to carry out the work—a quiet act of compassion from a bygone era (Conversely, perhaps the best evidence for this interpretation comes from Deidre Sanders’ problem page at gone era .What does this exploration tell us about “permissiveness” and the psychologisation of everyday life? The magazine problem page exhibits complex, perhaps even contradictory, trends. We can read “permissiveness” into the diverse sexual problems reported and printed on the page, and the frank language letter-writers and advice columnists used to discuss these problems. Moreover, from the late 1960s advisors more often referred decisions to the supplicant’s own emotional and ethical intuition, providing a realistic assessment of the options available to the letter-writer and leaving the choice of action up to her. This movement did not jettison morality, but relocated it from an abstract, rigid and externalised standard to the context of the individual’s own life and relationships. In many ways radical, this transformation nevertheless depended on advice columnists’ unshakeable belief in the ability and duty of adults to make rational and responsible decisions.The shift towards greater openness about sex on the problem page was accompanied by increased expressions of emotional understanding. However, this was not the same as an increase in overtly psychological explanations. Advisors continued to emphasise self-control, responsibility and maturity as key components in decision-making around sex. If they displayed more overt sympathy for supplicants than in previous decades and paid more attention to the emotional aspects of problems, they still offered brisk, practical guidance, emphasised the value of communication in broad terms and referred letter-writers to widely known and/or free counselling services, rather than providing more in-depth psychological explanations or a greater menu of therapeutic options.because they saw sexual happiness as crucial to healthy, stable relationships. By the end of the 1980s, in the cause of upholding this stance, advice columnists often promoted positions unthinkable three decades earlier: that detailed, explicit language was good, because it aided communication and understanding; that sex before marriage could be a useful “trial run”, provided everyone was honest, open and avoided the risk of pregnancy or disease; and that homosexual and heterosexual relationships on the stable, loving model were equally valid.Between the 1960s and the 1980s, advice columnists also retained their view of sexual intimacy as the glue holding relationships together, rather than sex as a good in and of itself. The model that Looking at sex and relationships on women’s magazine problem pages therefore sheds new light on “permissiveness” and psychological culture. Between 1960 and 1990, the problem page shows greater openness towards sex and displacement of morality from external standards to the individual, and a continued emphasis on self-control and responsibility, and practical guidance that took at best a superficial veneer. These trends were underpinned by a model of sex as an essential part of loving, stable relationships, and the notion, rarely explicitly articulated but always present, that such relationships were essential to social functioning. In the woman’s world of the magazine, before and beyond the 1980s, the problem page does not show the rise of individualism or the pursuit of pleasure above all else—and in turn, this suggests that looking elsewhere, at the experiences of other “ordinary” people, and other groups still marginalised or neglected in histories of therapeutic culture, has the potential to overturn many assumptions about the causes, contents and consequences of the psychologisation of everyday life.


Introduction: Technology advancements have enhanced artificial intelligence, leading to a user shift towards virtual assistants, but a human-centered approach is needed to assess for acceptability and effectiveness. The AGILE chatbot is designed in Kenya with features to redefine the response towards gender-based violence (GBV) among vulnerable populations, including adolescents, young women and men, and sexual and gender minorities, to offer accurate and reliable information among users. Methods: We conducted an exploratory qualitative study through focus group discussions (FGDs) targeting 150 participants sampled from vulnerable categories; adolescent girls and boys, young women, young men, and sexual and gender minorities. The FGDs included multiple inquiries to assess knowledge and prior interaction with intelligent conversational assistants to inform the user-centric development of a decision-supportive chatbot and a pilot of the chatbot prototype. Each focus group comprised 9–10 members, and the discussions lasted about two hours to gain qualitative user insights and experiences. We used thematic analysis and drew on grounded theory to analyze the data. Results: The analysis resulted in 14 salient themes composed of sexual violence, physical violence, emotional violence, intimate partner violence, female genital mutilation, sexual reproductive health, mental health, help-seeking behaviors/where to seek support, who to talk to, and what information they would like, features of the chatbot, access of chatbot, abuse and HIV, family and community conflicts, and information for self-care. Conclusion: Adopting a human-centered approach in designing an effective chatbot with as many human features as possible is crucial in increasing utilization, addressing the gaps presented by marginalized/vulnerable populations, and reducing the current GBV epidemic by moving prevention and response services closer to people in need. Gender-based violence (GBV) is a global challenge and a human rights issue that continues to disproportionately affect vulnerable populations, including adolescents, young girls, and sexual and gender Minorities, owing to its deep entrenchment in traditions, cultures, and social institutions ,2. CurreAdolescent girls ages 10–19 years and young women 20–24 years (AGYW) continue to be disproportionately affected by GBV compared to boys ,14,15. ADespite interventions, the GBV statistics still remain persistently high ,21,22. GFor the vulnerable groups, one common issue is the lack of access to timely, accurate information on what GBV constitutes, where to seek services, and what to expect at service delivery points if they experience GBV ,21,28,30To this end, LVCT Health, working with the University of Maryland and the Kenya Ministry of Health, embarked on the development of the AGILE chatbot for adolescents, women, and people from the LGBTQ community who wish to access and receive GBV services. The AI chatbot will provide GBV-related information and advocate for health-seeking behavior change amongst the users. In addition, the AGILE chatbot intends to deliver tailored self-care conversations to GBV survivors and those at risk. The chatbot will be hosted on the one2one™ digital platform that provides information on sexual and reproductive health, mental health, GBV information, tele-counseling, and referral to services that meet the needs of the survivors. This exploratory qualitative study aimed to understand potential users’ preferences, expectations, acceptability, and motivation for using such a bot. These findings will help the AGILE chatbot development by applying a human-centered approach and its implementation. We used an exploratory qualitative approach in the AGILE chatbot knowledge generation on GBV-related content We conducted a series of exercises to gather valuable insights and feedback. The study adopted the same panel of participants during the four steps of prototype development. The participants consisted of (1) adolescent boys and girls, emancipated minors aged 17 years, and those aged 18 and 19 years; (2) young women aged 20–24 years; (3) young men aged 20–24 years; (4) those who identify as sexual minorities (LGBTQ). The youth department staff at LVCT Health reached out to potential participants aged 17–19 years using a snowballing technique to recruit them into the study. The youth were recruited from urban and peri-urban areas as internet-enabled devices are ubiquitous in these areas. These youth tend to be more tech-savvy and would likely benefit from a chatbot intervention.Participants were provided with an information sheet on the study and the purpose of the data collection exercise. The inclusion criteria were for the participant to be either an emancipated minor, age 17, or age 18 and above, capable of consenting to the study. The eligible participants signed a consent form before engagement in which they were explicitly informed that their participation would involve audio recording, note taking and that their data would be used in production of publications. Additionally, they were notified of their right to stop their engagement at any point during the data collection process, without any consequences. The focus group discussions (FGDs) consisted of 10 participants each. The participants were provided with reimbursement for their transportation expenses as well as lunch.We commenced with a comprehensive desk review of the LVCT Health one2one™ digital platform. The review aimed to retrieve frequently asked questions by GBV survivors or those at risk of GBV as they seek support from the tele-counselors. We retrieved messages from the call center, SMS, and WhatsApp logs, covering two years—2020 to 2022. This objective was to compile likely questions and information to be probed during discussions with the target population. Subsequently, and prior to the prototype development, we initiated the first round of focus group discussions (FGDs). The objective of this exercise was to gather participant insights on chatbot design and functionality for addressing GBV and sexual reproductive health, including the participants’ understanding of chatbots; and their opinion on the type of information and services on GBV and sexual and reproductive health to be provided by the chatbot; and their preference on how they would like the chatbot to communicate with them . We developed topic guides for the FGDs consisting of open-ended questions that explored these concepts During the FGDs, the World Café methodology  was incoAfter the FGDs, we conducted the prototype simulation exercise where the developers guided the participants on how to enter the chatroom and provided a demonstration. The objective of the prototype simulation exercise was to assess participant engagement, familiarity, and user experience with the AGILE chatbot, gathering feedback on its usability and effectiveness in responding to GBV-related questions. The participants were requested to converse with the AGILE chatbot by posting any GBV-related questions and gaining responses from the chatbot prototype. The simulation exercise lasted 20 min. This allowed the participants to interact with the AI bot. After the simulation, the participants completed an ‘Engagement Questionnaire for AGILE chatbot’, providing scores on their experience of the AGILE chatbot use. The engagement questionnaire tested the user experience for terms such as easy to use, engaging, informative, motivating, messy, complex, and innovative.Finally, the data collection concluded with a round of FGDs that focused on the ‘prototype simulation’ participants’ experience. The discussions provided insights into the participants’ understanding of the AGILE chatbot prototype, the context they would use or access the chatbot for support, and any changes they would like to make to the chatbot’s functionality.The FGDs were conducted in Nairobi, Kenya, a preferred choice which allowed the research team to engage with a diverse group of participants representing various backgrounds and perspectives within the urban setting. All FGDs conducted were audio recorded. Trained research assistants moderated the FGDs and simulation exercises and were involved in the transcription, data analysis, and validation. The analysis aimed to uncover emerging themes and gain insights into the research questions. First, the audio files were transcribed, converting the spoken language into written text, which facilitated further analysis. Subsequently, data validation was conducted after the production of the transcripts from the audio files. Three research team members undertook a cross-verification exercise where the scripts were reviewed against the matching original audio file, and where necessary the transcripts were corrected. This was to ensure fidelity of the written content in the scripts, eliminating any discrepancies. The data validation process was followed by a systematic approach involving coding, categorization, and thematic analysis . This riThe study was approved by AMREF Ethics and Scientific Review Committee (ref P1204/2022) and the National Commission for Science, Technology, and Innovation (ref P-22-17893) in Kenya.The analysis resulted in 14 salient themes composed of sexual violence and female genital mutilation, physical violence, emotional violence, intimate partner violence, sexual and reproductive health, mental health, help-seeking behaviors/where to seek support, who to talk to, and what information they would like, features of the chatbot, access to the chatbot, abuse and HIV, family and community conflicts, and information on LGBTQ issues. The respondents’ knowledge of the chatbot was assessed by asking them to define a chatbot. Some respondents could define a chatbot, others had no information on chatbots, while others could only describe how a chatbot works.“I think a chatbot is a programmed robot. Let me put it like that. It is there to assist in case nobody is around to assist purely. So, like, for example, you wanted to call and talk to someone.”—FGDYW001-R4“A chatbot is like a phone, but it has automated answers in which you ask questions concerning yourself or confidential questions which you can’t share with people out there, and then you get automated answers.”—FGDAGB003-R6“A chatbot is a programmable AI  used to respond to people.”—FGDYW003-R2On previous experiences with chatbots, the participants mentioned that they had interacted with other chatbots while purchasing goods online and on telecommunication platforms. Other adolescents also indicated they might have unknowingly interacted with the virtual assistants. Participants expressed both satisfaction and frustration.“TIMS for NTSA. I used it to reapply for a new driver’s license.”—FGDYW003-R2“I have used one from KUCCPS . I was inquiring about placement, so I registered, but it was delayed a bit, so I had to chat, and the chat was immediate; it wasn’t personal, meaning it was some chatbot.”—FGDAB003-R9“I think the experience is good to some extent because you can get firsthand help before you go to… for example, the FLO chat before you visit a gynecologist, which we know is expensive. You can get a… the first hand like… it is a step. Like a step.”—FGDYW002-R1“Annoying, due to the simple fact that occasionally some of the questions you may ask may be difficult to interpret, especially when you find maybe people have accents.”—FGDLGBTQ001-R1Respondents indicated the use of the chatbot depended on the need and the specific issues, suggesting perhaps a measure of the severity of their GBV experience that would lead them to seek support via a chatbot or not.“It depends; it depends not at every time. But it depends.”—FGDYW001-R1“Yes, I can use it because not everyone knows everything. It is there to help; it can help me with what I don’t know.”—FGDAGB002-R2However, they indicated they would consider using the AGILE chatbot depending on the features and functionality of the chatbot.“It depends because of the efficiency… about the efficiency of the chatbot. Like, will I get the help I’m looking for? Will it be available? Will the response be what I’m looking for, or is this a robot that doesn’t understand? All these, yeah, the efficiency; it depends on the efficiency.”—FGDLGBTQ002-R3The respondents indicated various instances of conflict when seeking health care or help from adults, including parents and service providers, especially on matters related to GBV. Therefore, they would opt for the AGILE platform if it could understand GBV issues with minimal effects on user self-esteem.“Yes, I would use it; because of conflict, so many people don’t get along; I would like us to get along well.”—FGDAB003-R4“Yes, I would use it because of the fear of talking to parents, you just use it, and they answer you directly.”—FGDAB003-R3The respondents mentioned that they would prefer using chatbots due to the privacy and confidentiality of the platform compared to human interactions.“I feel the AGILE platform is a good chatbot because you can be afraid to speak out, but it gives you an opportunity as you are alone, and it’s someone you can’t see; you get automated answers. So, you say everything you feel, every question you have been asking yourself, finding answers, and you won’t feel ashamed because no one will judge you outside. It will be confidential, so I feel it is good.”—FGDAB003-R6“…I would use the chatbot because, when you look at the world nowadays, it is easier to talk to someone else you don’t know or doesn’t recognize you because of confidentiality, honesty, and trust. I might be talking to someone, and they chase some clout with it the minute we fall out. So, confidentiality is one of the key things that would make someone use a chatbot.”—FGDLGBTQ002-R4The respondents also mentioned frequent challenges in getting accurate information on most GBV subjects forcing them to seek information from unreliable sources, including friends and online platforms.“Besides whatever they have said, I can use it… because of accuracy. I could have information about something, but that is not the exact information. I trust the chatbot that whatever it shows, there is something that has been researched, and it’s something that I can rely on. Also, confidentiality; some people don’t share anything with anyone. If something happens to them, they’d rather die with it, but they will never speak out. If there is this chatbot that I can type anything and it can give me almost a solution to my problem, I will relax.”—FGDAGB002-R4The respondents were willing to embrace the chatbot if it could resolve healthcare barriers, including fear and stigma associated with seeking GBV services.“I feel the AGILE platform is a good chatbot because you can be afraid to speak out, but it gives you an opportunity as you are alone, and it’s someone you can’t see; you get automated answers. So, you say everything that you feel, every question you have been asking yourself, find answers, and you won’t feel ashamed because no one will judge you outside. It will be confidential, so I feel it is a good thing.”—FGDAB003-R6.“First of all, this chatbot will help prevent mental harassment to prevent trauma where you can’t speak to someone because of what happened to you. It will also prevent you from feeling lonely; at least it will assist you in that if you had thought of committing suicide, it will have made you feel comfortable.”—FGDAB003-R8.On sexual and reproductive health, the respondents required information on contraception, sexually transmitted infections including HIV, information on pregnancy, menstruation, fertility, sexual health, sex toys, and information on safe abortion.“Which is the best contraceptive to use? I had sex with a person of unknown status. What do I do? If someone gets a discharge, what would be the problem? I need to get pregnant, and I don’t know what to do?”—FGDYW001-R1“Can I access information about fertility and where? Then maybe I am experiencing a certain kind of discharge; what could be the cause? How do I get help?”—FGDLGBTQ002-R4“What types of contraceptives are available for same-sex partners? How do I use lube? How do I wear a female condom?”—FGDLGBTQ002-R4The respondents were keen on gaining more information from the chatbot on mental health topics, including symptoms, suicide, trauma, depression, mental GBV, and online counseling options.“I think it needs first to understand my type of mental problem. Then, it needs to tell me what is mental to understand what is mental.”—FGDYW001-R1.“I feel like you should give me a… it should refer me to somebody immediately.”—FGDYW001-R4“So, my other point was: Is this chatbot just going to be on issues that are happening now, or can it be something that happened ten years ago, maybe when I was a child, and I now need help because maybe this thing is affecting me now and I didn’t know, but now that I am older, I can maybe trace that it is because of this thing that happened when I was younger?”—FGDLGBTQ002-R8“What can someone do if they are feeling suicidal? What is mental health? What is mental GBV?”—FGDLGTQ002-R3On help-seeking behavior)/where to seek support, the respondents wanted information on referrals, precautions & procedures, child support services, safe spaces, and queer-friendly and safe spaces.“In case of rape, what procedures to follow to ensure I’m physically and mentally safe?”—FGDAGB002-R5“Which hospital near me is queer-friendly? What safe ways can I and my partner indulge in matters? Any safe spaces around me? Are there support groups for GBV?…They should keep you safe; you have reported him, and he has been arrested. Maybe they take you from where you were living to somewhere else.”—FGDLGBTQ002-R4The respondents needed information on conflict resolution, general information, and family conflicts and conflicts within the community.“How can you finish conflicts in society? My family and I aren’t on good terms; what should I do?”—FGDAGB003-R4How can I live with the people in the community? Will people love me again? FGDYW001-R10On information on sexual and gender minorities, the respondents expected the chatbot to address general questions on sexual and gender minorities, dating, safe places, and referrals.Is the place you referred me safe for my community ? Can I sue my partner, as our community’s union is considered illegal? —FGDLGBTQ002-R2Why am I queer? Did something happen during my childhood that made me this way? Is something wrong with me?—FGDLGBTQ002-R9The respondents also highlighted that the chatbot should not include personal identifiers, insensitive responses, questions on perpetrator details, or blaming responses and should be able to solve problems.Distributing blame, e.g., asking dressing code or time? FGDYW003-R3“One of the things I wouldn’t want to get in a chatbot is judgment because why would there be, ‘What did you do to get this?”—FGDLGBTQ002-R4You know most people don’t like to click these links. So I wouldn’t say I want to click the links. Yeah, it will be okay if you can tell me the complete information there. But redirecting me to another path, it’s a lot”—FGDLGBTQ001-R7.Participants articulated a need for accurate and comprehensive information on these subjects, highlighting the chatbot’s potential to bridge information gaps.The respondents also provided suggestions on the expected chatbot features, including the ability to understand multiple languages such as Swahili and sheng . Other offerings include responding in simple and easy-to-understand vocabulary and being available on various platforms, including web and app-based formats. In addition, the chatbot should possess emotional awareness, visual characteristics, confidentiality, a simple and descriptive name, integration with human help, round-the-clock services, and offline availability in case the users lack Wi-Fi or operate from a region without internet coverage and should be available in the lite version.“Something that will engage us as young people. And something that will give us the correct information. Yeah, not just information just because it is information. But correct information, and it should be easy to access it.”—FGDLGBTQ002-R1“I feel it should communicate in both English and Swahili because some people are not perfect in English. They will understand Swahili more.”—FGDAGB002-R10“I feel the information should be brief, short, and clear. There is no need for abbreviations, emojis…It should have sympathy words so long as they are appropriate and it tells you…Some people are in a situation whereby they want to be told something to feel good. It will relax them.”—FGDAGB002-R8“According to me, I feel they have put in a little time. 8–10 is little, even if it’s every day. Something might happen at 11 p.m. or 6 a.m. when you want to help and don’t want to wait until tomorrow. But they have said you call from 8–10, so I feel the time is not very appropriate.”—FGDAGB002-R9.“I would like for this chatbot to have confidentiality, first of all. For example, I have asked a question about something, and it should give me an answer which I will feel satisfied.”—FGDAGB003-R2Regarding GBV, including female genital mutilation, the respondents expected the digital platform to be integrated with human interactions like a toll-free number. This is along with the interface to improve services, including precautions and procedures post SGBV, the referral pathways, reporting methods, risk assessment, safe houses reassurance and counseling services, and details of the act of perpetration.“In case of rape, what are the right procedures to ensure you are both physically and mentally safe?”—FGDAGB002-R5[The chatbot should provide information about] What precautions and procedures should a GBV survivor undertake to ensure they continue to live a normal lifestyle? When you have been raped, what are the steps to follow? Regarding domestic violence, is it normal?”—FGDAGB002-R6In case of rape, what would you expect from the chatbot?[The following information] Do not shower, Do not wash the clothes, Give directions on what to do next, Refer the case, or connect me to the hotline. Call an emergency number.”—FGDAGB001-R6“First, ask for the location—time of the incident. [then tell them] Do not shower. Go to the nearest health center and then go to the police station. Do you have anyone you can talk to? Go to the nearest police station so that they can refer you to the nearest health facility. It would be best if you kept the clothes for more investigation. The next question is if someone has been raped. It would help if you kept the clothes for more investigation. First, you should use polite language to approach the situation, e.g., sorry—the first precaution to take, e.g., not showering. Positive response, e.g., goes to the nearest police station and report. It would help if you visited the nearest health facility for more tests, e.g., HIV, pregnancy, etc. Seek guidance and counseling.”—FGDAGB001-R6Based on the insights gathered from the FGDs, we developed a conceptual model that would provide a framework for the development of the AGILE chatbot content. The conceptual model, shown in The model served as served as a roadmap to ensure that the chatbot’s development aligns with the expectations and needs expressed by the participants in the FGDs. This ensured that the AGILE chatbot would be user-centric and effectively address the concerns related to GBV, as identified through the FGD discussions. Human-centered designs (HCDs) are crucial in developing innovative interventions by involving the beneficiaries in the development and implementation phases ensuring the users are at the core of the design process by understanding and incorporating their needs and preferences to establish products developed and embraced by the users ,48,51,56Studies have also demonstrated that the lack of HCD interventions hampers service delivery and utilization, leading to the underutilization of some critical services provided within general traditional health provision at community of facility setting. Studies identified that vulnerable people have a poor health-seeking attitude as they are hesitant to use traditional health services. Some reasons provided were at perceived complexity or discomfort, health provider level factors such as biases, stigma, negative attitudes and a lack of comprehensive information that bar vulnerable populations from reporting GBV cases and seeing support ,64,65,66Another issue raised by the respondents of the present study on the features of a chatbot included privacy and confidentiality when seeking help on sensitive topics. Research on adolescents living with HIV also noted that this vulnerable population group is likely to forego health care associated with limited confidentiality leading to health detriments . Other sOther studies have illustrated that vulnerable populations prefer population-specific health provision approaches that are tailored to their specific needs and circumstances. ,68,69. IStudies have identified that vulnerable populations seek healthcare solutions from websites and peers, which can be misleading ,70, incrIn summary, this study contributes to the growing body of literature on using HCD in chatbot development to support survivors of GBV. It provides nuanced insights into user expectations and preferences regarding chatbots, particularly in the context of GBV, sexual and reproductive health, mental health information and service provision. Additionally, the study’s findings align with and reinforce the principles of user-centered design, emphasizing the importance of meeting user needs and expectations in the development of digital healthcare interventions.The study had limitations considering that incorporating user preferences in product development is a relatively new idea in the Kenyan context. Adapting from conventional help-seeking approaches to the AGILE platform may take some time. Less technologically oriented users may experience challenges using the chatbot and may not benefit from its features. A significant part of the Kenyan population experiences poverty and compromised information technology infrastructure and may not have access to digital devices, or steady internet may hamper them from the benefits of using the AGILE chatbot.The interaction with vulnerable populations, including adolescents, young women, and sexual and gender minorities, demonstrates the significance of user preferences in enhancing the availability and accessibility of vital GBV services. These vulnerable populations must frequently use digital platforms for learning, social interactions, and leisure  Therefore, incorporating human-centered GBV interventions for these populations will be crucial in addressing common barriers to seeking care, including service provider attitude, lack of personnel trained to offer client-centered services, stigma and discrimination, long queues, and proximity of care facility. A virtual assistant that operates confidentially, around the clock, and understands different languages with features including sentiment analysis, multilingual users, spelling corrections, and translation will enhance communication, functionality, and accessibility of services. Adopting a human-centered approach in designing an effective chatbot with as many human features as possible is critical to increasing utilization to address GBV gaps by moving prevention and response services closer to hard-to-reach and vulnerable populations.