The explosion of popularity of ultra-endurance (UE) sports in the last 20 years has attracted a lot of interest amongst sport psychologists who studied many aspects of their participants. However, a temporal perspective on the development of the UE engagement was missing. With this research we aimed to explore the long-term individual journeys of UE athletes and how their passion developed over time from the moment of inception to full adoption of UE as an identity and a lifestyle. For this purpose, we conducted semi-structured interviews with 16 UE athletes  in cycling, trail running and triathlon. Five key themes (with 13 sub-themes) of their UE engagement journey emerged as the result of the interpretative phenomenological analysis of the interviews: 1) The making of the UE athlete, 2) Finding the tribe, 3) Peak experiences, 4) UE lifestyle and 5) UE passion and outcomes. Rich descriptions were generated demonstrating that the development journey of UE athletes is a multi-year, sometimes life-long endeavour, which is full of unique experiences, emotional rollercoasters, passion, overcoming and surrender stories and also of spiritual growth. And while each journey we heard was unique, we could observe similarities in its key milestones. We summarized them in a wholistic UE journey framework which we developed based on this research. The new “Temporal framework for progressive UE engagement and passion development” is presented here for discussion and further validation. Ultra-endurance sports and races are experiencing an unprecedented popularity growth among non-professional athletes globally . The uniThe identity research in sports psychology until now primarily focused on athletic identity, which is defined as the “degree to which an individual identifies with the athlete role, within the framework of a multidimensional self-concept” . An athlSeveral studies also applied a broader social identity construct to UE sports. Thus, in a qualitative interview-based study with Polish winter ultra-marathoners , researcAnd still, in spite of a lot of research light shed on the selected topics of UE, a general psychologic theory or model explaining why and how humans conquer ultra-distances is missing, as well as a long-term perspective on the total journey. The latter is especially relevant in UE sports, where the engagement of non-professional athletes can last a lifetime. The hobby becomes a passion and a lifestyle and seems to dominate the self-identity definition and to take the shape of personal ideology . Which tIn order to answer this challenge, we merged the psychological and psycho-social approaches of personality theories to gain a broader perspective on the process of the integration of UE passion into the personal identity and lives of non-professional UE athletes. The Self-Determination Theory of Behaviour (SDT)  was idenAccording to this theory, humans are driven by the innate psychological needs for autonomy , competency (a desire to interact effectively with the environment) and relatedness (a desire to feel connected to significant others). The fulfilment of these needs is seen as the necessary condition for ongoing human growth, integrity and overall well-being and all three of them must be satisfied for optimal human development. So “people will tend to pursue goals, domains, and relationships that allow or support their need satisfaction” .Naturally, people are rarely consciously aware of their psychological needs and they don’t pursue their needs satisfaction per se. They are rather after activities and goals which appear interesting, important and appealing to them. Therefore, we assume that a UE race represents such an important activity, and the performance goal in a race represents a “growth goal”  which enWe also assume that engagement in such an intense hobby as UE training and racing involves a strong motivation and a passion. The Dualistic Model of Passion by Vallerand , which fThere are two types of passion according to the Dualistic Model of Passion: Harmonious Passion and Obsessive Passion . WhereasObsessive passion may lead to rigid persistence in a physical activity, leading to chronic injuries  and alsoBoth social and personal factors contribute to the development of passion. Before they find something interesting and relevant, most people engage in a variety of activities . The process goes from activity selection, to activity valuation to activity internalization , which sNowadays, and increasingly over the past 20 years, UE has become a passionate and a high value activity for millions of people. It is also a part of identity for millions of people. They all went through a certain personal journey and very unique experiences leading them to develop this passion and adopt a certain lifestyle, which differs significantly from the norm. The aim of this study is to explore the whole UE journey of individual athletes from the moment of initial interest to a fully developed passion and to better understand the factors impacting the formation of UE passion and adoption of UE as a personal identity and a lifestyle. The novel aspect is the long-term view on the UE phenomenon in a life journey format, as seen from the perspective of lived experiences of UE athletes, as well as an attempt to create a generalized holistic framework for this journey as well as a model explaining the long-term UE engagement and passion development.For this study, 16 non-professional UE athletes in trail running, triathlon and cycling were interviewed. They were selected based on the following criteria: 1) participation in UE races (minimum of 2 races lasting over 6 hours over the past 3 years) as an amateur  athlete, 2) interest in the topic and availability for interview, 3) English speaking. While this purposeful sampling was to serve the explorative and not representative needs, a variety of ages, years of experience and a balance of genders was aimed at.The participants were an average 43 years old (SD = 10), 75% male and 94% highly educated (bachelor degree or higher). They practiced UE as their main hobby for an average of 14 years (SD = 8.7), all worked in white-collar knowledge-based professions, almost all full-time (only two on 80% basis)–see La Commission cantonale d’éthique de la recherche sur l’être humain (CER-VD) of the canton Vaud, Switzerland, prior to starting the study. Participants were recruited via the personal network of the principal investigator, were recommended or responded to advertising on social media and on a sports media platform. In the recruitment communication, the aims of the research were outlined and interested parties were encouraged to make contact if they wished to volunteer for the study. Those who responded to the recruitment appeal received an Information Sheet for Research Participants, with interview information and instructions in Q&A format. They also received and signed an Informed Consent Form before they were interviewed. Participants were reassured that (a) participation in the study was strictly voluntary, and (b) the collected data would only be used for research and would remain strictly confidential. The transcripts got anonymized and coded under the following identifications: A1, A2, A3, etc. The voice records were destroyed after transcribing and the transcript data was stored on an academic server based in Switzerland in accordance with the Swiss Federal act on data protection (FADP 235.1) and the Canton of Vaud Act on data protection (LPrD 172.65).This project obtained ethical approval from The theoretical foundation of the conducted research lies in the constructivist paradigm and phenomenological philosophy. Together they define the methods of the presented research. Qualitative interpretative phenomenology was selected as the methodology of choice for our research question due to its focus on understanding and interpreting the lived experiences of individuals. Being an epistemologically consistent one , 34, it Each interview followed a semi-structured guide with 30 questions (25 open and 5 closed), lasted between 1.5 and 2 hours and took place face-to-face, respecting Covid-19 protocols, or via Zoom. The interviews were designed to encourage story-telling around key moments of the UE journey, to stimulate self-reflection, elicit emotions, and evaluations of key experiences. As a visual help and a structuring tool for temporal storytelling, participants were asked to draw a timeline of their EU journey and its key events, starting from its inception point, freely chosen, to the current time and beyond–by projecting it to the future in line with their vision of future UE engagement–and to talk about it in as much detail as possible. Respondents found the exercise interesting and novel, stating that it was a learning opportunity for them. Please see When talking about self-identity and UE lifestyle, the researcher used the stimuli of 16 photo collages, with images of different UE athletes and also humans in different social roles  and leisure situations  as well as objects  to facilitate the discussion. Please see Interview data was recorded and transcribed verbatim with total interview transcription data comprising 139 pages and 77104 words. The analysis of the interview transcripts was done using the IPA and iterative hermeneutic reduction techniques, whereby the athletes´ accounts were analyzed and interpreted by the researcher, in line with the “double hermeneutics”  process The step-by-step analysis of interviews followed the 6 phases of thematic analysis proposed by Braun et all, .Phases 1–2: Familiarization & coding—Deep engagement with data consisted of multiple readings of the transcriptions, using the analytical and meaning-making lens of the researcher. A wide set of creative codes and notes was used to tag the transcripts, preparing the foundation for the theme development.st round of analysis focused on identifying rich descriptions of key events, looking for connections and shared themes and analyzing them using the phenomenological reduction technique of empathic yet critical engagement [nd round the key subthemes with verbatim statements describing them were extracted, yielding a total of 85 sub-themes. With this list in mind and at hand, the transcriptions were read and analyzed one more time, looking for patterns, connections and tensions. As a result, the 85 sub-themes were organized into 5 themes and 13 sub-themes, which all received the descriptive names presented in Phases 3–5: Theme development, refinement and naming—These phases consisted of 2 rounds of analysis of the pre-coded interview parts. The 1gagement . A specigagement . In the Phase 6: Writing up—At the final stage of the IPA analysis, the analytic themes were transferred into a narrative account, enriched by the verbatim statements, which is presented below in Results.With 16 interviews done, we clearly reached “data saturation”  and coulInherent to interpretative phenomenology is the concept of the inseparableness of the researcher and the process and results of inquiry. The existing knowledge and opinions of the research needs to be made explicit, understood and interpreted in the course of analysis. Thus, the researcher practices “double hermeneutics”, making meaning of participant experiences and own experiences. With the principal researcher being a former UE athlete, three main procedures have been implemented to ensure the validity and rigor of qualitative research . First, The following themes and sub-themes were identified as a result of the IPA analysis of interviews with 16 non-professional UE athletes:st experience with UE racing.In the beginning of each interview and after the warm-up discussion about the current and past seasons, each participant was asked to share the origin story and to recall their first encounter with sports in general and their first experience with UE racing specifically. While each story was unique, two common sub-themes crystallized and repeated themselves in each interview: first, participants identified themselves as someone with a UE character, or predisposition tracing back to early childhood, and second, they all had a positive 1st participation in an UE race. All participants spoke of their “natural” inclination towards endurance sports and how they felt attracted to outdoors, adventure and exploration of own limits. We could also observe several commonalities in terms of psychological traits, such as the ability to practice delayed gratification, engage in deliberate practice, and commit and follow through to reach long-term goals. They all displayed the need for a lot of sensory stimulation as well as a growth mindset. These personality characteristics, the seemingly inborn predisposition to endurance, adventure and outdoor, coupled with a set of circumstances and the presence of crucial friends or groups led them to their 1st UE race.The majority of participants (14 out of 16) described themselves as “sporty kids”, growing up playing sports and spending a lot of time outdoors. Several had adults in their childhood, who were either sporty or outdoorsy themselves and who influenced and/or supported them in their early sporty endeavours. This urge to move persisted later in life, transformed into different sport interests, sometimes went dormant for several years occupied with studies, early careers or/and building families, but ultimately resulted in their 1“The thing that has always been there is this drive to do extreme sports.”(A10)“My dad used to take me on the mountain hikes since I was a child.”(A11)"I have a really bad urge to move all the time, which I have since my childhood. For me, it is a torture to sit all day.”(A15)“My PE teacher was Tasmania´s best marathoner at the time. He saw that I could run, he said, come down, train with us. We were only about 12 people, kids, but only hand-picked ones. When I met him, he was 60–65 and he coached me until I was 17.”(A7)“As a child, my parents threw me into loads in sports. I played tennis, badminton, cricket, rugby and football at a regional level. So I was super sporty and then then went to a boarding school where it is sports all days, morning, after lunch, after homework. From 14 to 18 y.o. At University I played rugby and then I started work and no sport for 4 years maybe, or even longer. The sport I do now in one month would be double what I did in year. And, around 2011 was when someone said that I should get into road biking. So, I bought a road bike. The 1st event I did was 100miles ride London.”(A16)All participants reported having had positive emotions and overall, a very positive experience of their first UE race. In fact, for many, the first race represented an overwhelming event, which they all talked at length about, describing the kaleidoscope of emotions and physical sensations which they had never experienced before: from extreme fatigue, physical pain, dealing with elements, thousands of meters of elevation to the über-joy of deep connection with nature and the pure elation of crossing the finish line. Combined, these experiences brought about the re-definition of their perceived limits of physical and mental abilities and represented a huge source of pride and joy and a boost to self-confidence–hence, a very rewarding experience overall.“Oh, it was great (my 1st Ironman race). It was actually amazing because I did not know what to expect and I really enjoyed it. I don’t say it was easy, I suffered of course, but it just went like this. It was an amazing experience.”(A8)“I felt this jubilation crossing the finish line. When you feel that, tears well up and you feel, well, that I have achieved something special, only I can do it, I have done it, I did not know my body could do this, I did not know my mind could do it.”(A7)"The best one is really the 1st race, the Ultracks in Zermatt. When you realize that you can do that and you feel good, and you suffer a bit, but you suffer in a healthy way. And I thought that I was not sure that I could do such a race because if you never went and did an 8hr race, you don’t know if you can do it. It is 3600m of elevation, it took me around 7hr 40min. And it was a really cool moment when I realized that I can do it. It was cool, it was possible.”(A15)st UE experience, in spite of difficulties faced. This 1st UE experience represents the first crucial milestone on the journey to long-term UE engagement.Results show that “The making of the UE athlete” requires “the right material” of a person with an innate predisposition to UE and adventures to be exposed to the UE activity and who attaches a positive meaning to the 1The social component plays a crucial role in the stories of UE athletes. On the one hand, they experience a lot of pressure for not conforming to traditional roles in society, especially felt by women and older athletes, whose lifestyles and pastime differ significantly from their peers. On the other hand, they are looking for their “tribe”, for people who are like them, to get social confirmation and acceptance. This contradiction represents a social paradox inherent to UE.An idea of being different, an outlier, runs like a red line through all interviews: being a non-professional UE athlete is widely associated with being “crazy” in broad public. The athletes describe themselves as “not normal” or “outliers” and their lifestyles as very different to their peer groups. They talk about an UE sub-culture, a tribe, referring to “us”, i.e. people who train for and race UE events, juxtaposed to “them”, meaning people with traditional hobbies and lifestyles. “Them” are frequently also their own families, who mostly support but actually don’t understand. This creates a lot of pressure, especially on women:“Nobody understands it apart from my sports friends. Outside people don’t understand it.”(A3)“When they hear the distance, the things I have done one after another. I scare a few people, especially men, that´s the thing. I don’t think I scare off women actually, but men I do scare off. When I started doing longer distances and I was not getting married and having kids, my mom said “why are you wasting your time with the stupid sport?” And that was the argument every week “why are you wasting your time?” And then I just stopped telling her. So, I have never told her that I did an ultra-trail race. It is a bit weird. My parents had other expectations, and running around the mountain was not part of their expectations.”(A4).“For my mom it was hard to wrap her head around it for a while. She never understood why a middle-age guy would be in lycra for almost all of his life. But when I started doing races in Turkey and she saw me doing it–she kind of liked it. She came to half-Ironman I was doing in Turkey and there was this 70 or 80 years old Russian guy doing it and she was so impressed by it. She more accepted it rather than understood it.”(A1)Judgement and lack of understanding in general in the outside world, is, however, more than compensated by the unity within the UE sub-culture. All participants talked about meeting like-minded people in groups or clubs of UE athletes, who were more advanced in UE experience and who inspired them and helped to navigate many decisions at the inception and early stage of their UE hobby. These groups and people serve as a source of information and provide social reinforcement for the “deviant” UE behaviour and lifestyle.“When I found Ironman triathletes, I finally found my people. The mentality of people who enjoy swimming 5km, 10km, biking 200km. These are the people that I finally felt and I was at home with. That was a huge gift to me. My life finally developed reason and calmness. And my self-identity.”(A3)“My friends told me about Ironman–after the swimming we went for a beer and talked about Ironman.”(A2)nd important stage on the long-term endurance journey.We believe that “finding the tribe” of like-minded people who share the same interests, values and norms and being accepted there resolves the social paradox of the intense UE hobby and represents the 2Racing a UE race is an extreme event. physically, mentally and emotionally. It is so extreme and intense that it is hard to verbalize. It is truly an ineffable experience. One of the participants tried to describe it:“Maybe you can describe things that are less important in your life. But when it is very important and very special, then you cannot find words. It is like when somebody asks me: “What did you feel when you saw your daughter for the 1sttime?”(A14)All athletes reported having experienced intense or peak emotions during UE races. In fact, the tougher the race, the more memorable and extreme emotions it produced and the more fulfilling it was. One of the athletes verbalized it succinctly:“I need to suffer to get more back from the race.”(A7)“It was horrible but nice”, A5) and the endless rollercoaster of positive-negative emotions. Intense negative affect becomes a positive one within a very short time, and then it goes back to negative on the next ascent and the whole chain of emotions repeats. This struggle between body and mind happens in every UE race.All participants mentioned the unpredictability of every race, its emotional dualism and polarity In most cases, the extreme hardship of the race is overcompensated by the elation of finishing and the joy of having mastered, persevered and overcome the difficulties. This is also why after finishing in pain and tears and swearing “to never do it again”, athletes find themselves signing up for the next year´s edition literally the next day.“I was super happy, super proud to finish, impossible to describe the feeling, and it keeps with you for a few days, you are happy for 2–3 days. It is like a high.”(A5)“During the race  was super sick again, got to the finish line and cried. I sat on the bench and cried, asking really what I am doing there. And the next day I looked at UTMB (170km race with 10.000m of elevation).”(A4)Racing ultra is an extra-ordinary embodied experience. The most profound and mostly negative emotions are triggered by intense bodily experiences, such as extreme fatigue, muscle soreness, blistering, dehydration, indigestion and stomach aches and sometimes light injuries due to falls on technical terrain. One of the interview participants described how he was recovering after the 40 hours, 165km and 10680m of elevation of the SwissPeaks Valais trail running race:“It was much, much harder than what I anticipated. It is a very technical race, it has quite steep climbs. After the race you almost feel desiccated. Even if you drink, drink, drink the day after, you still feel like a dried raisin. Completely desiccated. I remember my legs—it took me almost a month to stop aching. My legs, tendons and the joints… my knee was swollen. Things I have never had before. And I had tendonitis in the arms, in the elbow, from the poles. My calf, it was like wood, for 2 or 3 weeks. It took me 2 months to get all the symptoms away.”(A5)A UE race can be a life-changing experience which opens doors to a new level of consciousness and a new and different concept of self. It is the ancient path to enlightenment through bodily suffering, a “beautiful suffering” as athletes call it. For some, it is outright cathartic.“I think I learned more about myself in that race than probably in any other moment of my life.”(A16)“This was when I discovered something about myself that I knew was there but I was not consciously aware that all my reasons (for racing Ironman) were deeply internal and I had hundreds of them. All life experience that I had, all the suffering that I had seen, all the joy—it all lives there.”(A3)By pushing the limits of endurance athletes re-define their own physical and mental limits and gain a new level of self-confidence:And after that I knew I could do anything.”“(A1)“You need to show that you are strong not when things are going well. My best race was easy. But when things go bad, this is where mindset kicks it. In general, it gave me a mindset to face every obstacle. Every challenge that comes my way. Growth mindset.”(A2)An important step on the self-discovery journey seems to be the realization that experiences made in UE training and racing apply to other areas of life. All interviewed athletes reported on a strong connection between UE and other areas of life and on how their self-perception changed under the influence of UE.“It helped me to better handle my job, to have less stress, it gave me energy. It gave a way of escaping from some of the pressures of the job, so it helped me to do other things.”(A10).“I think it changed my life in a positive way. No single event has done that. This whole journey has been life-changing. I am fitter, healthier, I think I am a better person, I am more relaxed, I know more about myself.”(A16)The bodily experiences are intensified by being in nature. Athletes report on magical moments in the wilderness, on encountering nature´s beauty and experiencing it in a new way. They start appreciating nature more and want to spend a lot of time outside and discover new places as part of their UE hobby:“It´s really magical to be going through the night on the mountains almost completely on your own. You see the animals, it´s pitch dark–and I found it completely magical”(A5)“What I really like is discovering new places in the mountains. The biggest reason to do it is to be in all those nice places.”(A4)rd stage towards UE passion development and long-term UE engagement.The extreme experience stage of the UE journey is probably never completed. It is the essence of the UE phenomenon. However, we believe that fully embracing this experience, attaching deep meaning to it and succeeding in connecting it to other areas in life represents an important 3UE training is a very time-consuming hobby. It requires a lot of discipline and very good time and energy management. It also means making choices in the allocation of available time according to one´s priorities. Making these choices explicit can create tensions, especially when own preferences conflict with the norm and social roles.All participants acknowledged the difficulty of maintaining balance between sport, work and family/private life as one of the main challenges. The resolution of this challenge was found in creating routines and habits around training leading to structuring the day, week and year according to training and racing schedules. This means that UE training is fully integrated into the daily routine, it becomes a habit and ultimately a lifestyle choice, which transcends all other choices in life. Even travelling becomes “Ironman tourism”, as one of the participants described it.“I would wake up super early on Sunday, drive to the mountains and try to be back for lunch. It has been like this for last couple of years.”(A5)“If you really love doing this and if you love to continue doing this, it becomes part of your life, becomes ingrained in your lifestyle, so you don’t have to make a choice.”(A3)“I wanted to work less. I asked specifically. Because it was possible to work 80% and I thought why not do it if you can improve quality of life and also can follow your passions next to it? For me that sounds like a good trade-off–I have a little bit less money but more quality time.”(A15)UE lifestyle means making sacrifices. Most have to cut other hobbies, make social events which are not related to UE hobby very limited or practically absent. For many, due to the volume of training required to prepare for UE races, practically all free time is dedicated to UE training. Some embrace it consciously and fully, some struggle.“I was always gone for 3-4hr bike rides, coming home completely destroyed, and then you don’t feel like cleaning the house after. It was sometimes also putting pressure on our relationship. My husband sometimes said: you don’t have time for me, always with your sport, you are always gone, you go to work, then you go to sport and we never see each other.”(A15)“Now this became most part of my day on my weekend. It took a lot. I gave up other hobbies. Social life is very limited now. If I go out, I am the first one to go home because I am the 1stone to get up. I feel sleepy and tired. But no regrets”.(A2)UE lifestyle also includes adaptation of living conditions to fit the UE hobby, with a preference for living outside of the cities. One athlete in our sample moved from London to the Pyrenees in France, leaving his corporate job to become a full time UE coach and seeking better conditions for his training. He said:“My parents thought that leaving my corporate job and doing coaching full time, is maybe not the best financial decision I have ever made. But it was not a financial decision, it was a lifestyle choice.”(A11)All interviewed athletes were motivated by improving their skills to better handle the complexity and extreme difficulty of UE races. Many were engaged in deliberate practice: they followed an individual training plan, focused on and planned for the A-race of the season, or even a longer-term goal, and some worked with a coach.“I use a spreadsheet on Excel where I enter all my key sessions, usually 1 session per sport per week, and then I adapt the rest. I plan the session–I start with the race and then I go back. For example, I want to hit 4-5x 40min at this watt 2–3 weeks before Ironman and then I plan it back. Every block of training, I put main session every week but not always with specific power and pace target. And every Sunday night I plan my week. And I use HRV to get the idea for the recovery. I think I would probably be better with a coach. But I don’t want to let go of the freedom and learning about training. And it is also very rewarding to have a good race and qualify and to know you did it all by yourself.(A6)All interviewed athletes had been progressively increasing the UE challenge year on year by racing longer and harder races. There was also a broad agreement that achieving mastery takes years and that with master competence a successful performance becomes more likely. All participants showed high motivation levels to keep going on their UE journey in the pursuit of mastery. This creates a powerful loop of positive reinforcement: progression towards mastery is satisfying and confidence-building. And the UE hobby becomes a passion.“When you have not done it yet it seems completely insane. Once you´ve done it, you think, well, it is only a 100km.”(A4)“I am more proud about the progression, step by step… it gives me confidence.”(A7)“I feel sorry for the people who don’t have passion. When you are driven by passion life has a different quality. It is very passion based.”(A1)Establishing the UE hobby as a lifestyle choice and habitualizing it and the pursuit of UE mastery as a life-long commitment signify another important stage on the path of long-term UE passion development.With progressing mastery and developing UE lifestyle, athletes seem to define themselves more and more via UE. This does not mean that they forget their other social roles as parents, partners and professionals, but UE plays an important role in their self-definition. In this process of adult identity formation, UE acts as a psychological resource, an antidote and a compass for navigation in the post-modernist and post-industrial world, thus fulfilling some of the meta-needs.“I have never felt that I gave anything up for that. For me, it has become a part of my identity.”(A7)“I want to be able to do things that other people can’t do… I want to be able to run to a mountain bigger than somebody else. And it is part of my identity. If I look in the mirror and I ask myself, what do I stand for, I stand for the guy that can do things that other people can’t do.”(A7)In addition to the positive spiritual benefits of experiences in nature, acquiring a wholesome sense of identity and self-concept, creating a coherent life story and fulfilling meta-needs, there are also a number of ambiguous outcomes of UE passion.Athletes reported on their mood being dependent on training and fluctuating motivation. Positive mood is connected to good training sessions and high goal motivation, whereas negative mood states are connected to periods of demotivation after accomplishing a goal or just being fatigued by training.“My wife loves me getting away for training and coming back. I am so happy when I get back. If I don’t go, I will be miserable around the house.”(A7)“When you stop training for some reason, like when you are sick or injured, then quickly you start to miss it, you get depressed easily, you get itchy, irritated with people more quickly, you get stressed more quickly, you drink more alcohol.”(A10)“I don’t think it is healthy. Why would it be healthy to run more than 100k? And it is also not healthy to do nothing. I would go crazy if I did nothing. It is unhealthy because of injuries. I had plantar fasciitis, knee pains and now Haglund´s syndrome. I find it really difficult with injuries. Doing nothing and don’t see a change. And then you start again and it gets better.”(A13)Participants also talked about internal pressures to keep training and about self-esteem contingencies connected to racing. These internal pressures can take control and compromise autonomy of action, thus making the experience less fulfilling. This, combined with mood dependency, can be a sign of obsessive passion, when activity is pursued uncontrollably, in spite of negative contingencies, and the autonomy of action is lost:“All my life I have been forced to train… Well, I did not directly force myself but I always had to train, keep thinking about it, it is pressure. And sometimes you want to do something else and you can´t. And your life revolves around your sport. And I want it the other way around now–I want to decide when I want to do sport.”(A8)Engaging in UE sport accentuates body awareness. Being an outlier for sporting achievements builds an expectation  of an athletic “super-body”. Being on a start line of Ironman can be an intimidating experience if someone does not possess this type of lean and muscular physique. Doing fit things is inseparable from looking fit, this is the idea that most participant seem to share, and they also admit their vanity and the importance of looking fit on top of being fit. This is what sets them apart from “average and normal” people and gives them a sense of belonging to the UE tribe.“I like to be fit. Look fit at least.”(A8)“I suppose, I am a bit vane, in the sense that you want to look fit, look well, look healthy, there is a bit of that that goes with it. I don’t think of myself like a sedentary 60 years old and I don’t really feel like that. So, I did not spend a lot of time thinking about it I just realize that is not me, but another group of people.”(A10)Preoccupation with own health and looks and the desire to “bio-hack myself” can intensify and put additional pressure when the first signs of aging start to manifest themselves and performance declines. Some embrace it with curiosity and openness, some with anxiety and despair.“Yes, I would like to hit triple digits. I want to be really strong through my 80s. I want to be fit. Many people just disregard the preparation you need to do to go through your 50s and 60s to be healthy. That is really important to me. That is why I look into sleep and nutrition. I want to make sure that when I get to my retirement, let´s assume it is 60, these 30 or 40 years I want to still be doing stuff. That scares me. So, if I don’t deal with it now, I don’t want to start thinking about it when I am 60. So that is important.”(A7)“Age started to be a huge factor, after 59 or so. Age is not progressive, it has huge jumps, I found it out the hard way.”(A3)Obsessive passion can also become a path to unethical behaviour, when too much ego is invested into the passionate activity. One of the participants, a seasoned Ironman athlete, acknowledged the risk:“The issue of performance enhancement (doping), it is a very thin line. And I think it is intrinsic to this sport. We spend so much money, so much ego, so much time on it.”(A9)The UE lifestyle and adoption of UE habits signify a stage of full integration of UE into one´s identity and the achievement of the long-term sustainability of UE passion as a “life plan”. All interviewed athletes demonstrated not only strong commitment to UE, they actually talked about their life-long plans for an active endurance lifestyle. They envisioned themselves staying active for life, and, health permitting, still being super active and even racing in their 80s. While admitting, that the type of activity will most probably need to adapt to aging, they all had plans to swim, bike, run, ski, walk and move a lot … till they die. And some even made plans to die in a race.“My family knows that I need it. They have a clear idea that I will be in a race every year of my life for the rest of my life.”(A14)“I made this decision after Kona, it took me a couple of months, I want to be in the 70 to 74 age group. I want to make it to 74.”(A3)“I will always go to the mountains. Maybe not running, but climbing and hiking. I can’t imagine life without being out and in the mountains.”(A12)“I hope I will want to do sport all my life. I hope I can do it as long as possible.”(A8)“Hopefully I will die in an Ironman race. After 30km in marathon.”(A1)Of course, we hope that nobody will die in the UE race and that a harmonious passion of UE will enrich the lives of UE athletes for many years to come, to continue the positive and inspirational (life) stories we heard in the interviews. These stories, and commonalities between them, as well as the themes and subthemes generated in our analysis, led us to the creation of a holistic model for long-term UE engagement and passion development, This framework connects the themes and milestones of the UE journey with the Self Development Theory of Behaviour, which was the meta-theoretical foundation for this research, and its key constructs of need satisfaction and motivations. It outlines the possible mechanisms and processes of UE passion development as well as its outcomes. As such, this model represents the psychological and phenomenological interpretation of the typical UE journey, based on the phenomenological and psychological interpretation of the qualitative data of this research and the most advanced research in UE psychology.The growing popularity of extreme endurance and adventure races is a phenomenon of our post-industrial, post-modernist and very comfortable Western world. As a reflection of the society living in this world, it is complex from psychological, sociological and philosophical perspectives. With the current research we attempted to better understand the long-term UE journey and the passionate engagement development. We found that this journey is a long and rich one, full of peak experiences, emotional rollercoasters, overcoming and surrender stories and also of spiritual growth. It is a road less travelled—and it is a road of passion.The IPA revealed 5 core themes and 13 sub-themes in the accounts of 16 individual UE journeys . These tWhether someone is attracted by the idea of extreme racing or whether one attaches meaning of threat or opportunity to possible novel experiences, is probably defined by their high-level psychological predisposition , 55. The“Tribe”, in anthropology, describes a notional form of human social organization based on a set of smaller groups, united by common descent, language, culture and ideology . Social Whether UE sub-culture is entering popular culture through the growing popularity of UE is however questionable. We think that it is rather striving to escape its normalization, which to some extent happened to marathon running. It does so by becoming even more ultra and, in fact, über-ultra, by adding longer and harder races around the world to get lost in the wilderness and quench the thirst for “more than ordinary moments of existence”  and peakPeak experiences are "rare, exciting, oceanic, deeply moving, exhilarating, elevating experiences that generate an advanced form of perceiving reality, and are even mystic and magical in their effect upon the experimenter.” . They arA less known aspect of UE experience is the “self-discovery journey” uncovered in our research. For participants, it was a very important long-term process, which was triggered by the “life story” format of the interview and the use of the timeline as a tool stimulating self-reflection. All participants alluded to the benefits of UE for personal development, of how the extreme experiences in races helped them to build self-confidence, learn humility and gratitude and even to become better people overall. While “self-discovery” can be seen as a cognitive process with pragmatic benefits, the “uniting with nature” sub-theme provides a spiritual dimension to UE racing. Accounts of mystical visions, unseen natural beauty, realizations about the sacredness of life and its purpose and meaning, were among the most moving experiences in the lives of interviewed athletes. Indeed, research confirms that UE athletes have higher scores in life meaning than runners competing in shorter race distances . GettingAccording to Maslow´s investigations into the peak experience phenomenon, particular settings and activities act as potent triggers for peak experiences and flow states, and they include solitude, physical accomplishment, meditation and being in nature, in particular water, sunset, mountains and wild animals , 59. ThaPeak experiences make life worth living. They turn hobby into a passion. For all interviewed athletes, UE training and racing represented an activity about which they were passionate–and which satisfied their innate psychological needs of autonomy, relatedness and competence . The autLiving UE passion and practicing UE lifestyle brings about a number of outcomes, which quality is driven by the type of passion formed. A harmonious passion is formed if the internalisation process is fully autonomous and internally motivated. If, however, this internalization is controlled and subject to external pressures, and too much ego is invested into the passion, an obsessive passion will be the result. An obsessive passion is connected to possible negative outcomes . The parEven more, peak experiences, need satisfaction, the UE tribe, identity and lifestyle, master competence in UE training and racing, all this leads to the formation of a passion-driven life plan for non-professional UE athletes: they simply do not see a reason to stop. Ever. They all claim to want to continue training, racing and leading an active lifestyle till a very old age, until they die, for some–preferably in a race.Within the time constraint of maximum 2 hours, we were looking at many years of UE engagement with our participants. While this approach provided spontaneous “unaided” responses, some preparation time and advance notice for the participants might have produced more detailed timelines, which was also suggested in our member reflections, and resulted in more co-creation, true to the spirit of constructivist inquiry. Additional follow-up research with the same group could provide further insights for the “Temporal framework for progressive UE engagement and passion development” we created. In general, a longitudinal approach to qualitative and quantitative studies of the UE phenomenon would greatly enrich its understanding.Like Tolstoy, who stated that “all happy families are alike”, we also found that there were similarities in stories of 16 UE interviewed athletes. Starting with an innate predisposition and intrinsic motivation towards endurance sports and adventure experiences (which can manifest itself early or later in life), UE athletes go through years of training and racing developing their passionate engagement. Over time, they satisfy more and more of their innate psychological needs through it, so that UE becomes a high value need leading to repeated race participation. By going through extreme physical and emotional experiences, athletes deepen their intrinsic motivation and solidify formation of the UE passion. This passion gets externally reinforced by the UE sub-culture. In parallel, the athletic UE self-identity is activated, developed and confirmed, so that the passionate hobby becomes an identity-defining activity and a lifestyle choice with a number of adaptive and maladaptive outcomes, associated with harmonious and obsessive passion types respectively.And while the races and details of engagement with UE sports of our athletes were different, as much as their age, gender, social and cultural backgrounds, we found that the key high level milestones of their UE could be generalized. Thus, we stepped out of the IPA method and undertook an attempt to create a model of a long-term UE engagement and passion development. With this model we endeavour to create a comprehensive framework to understand the whole UE athlete, for which we combined our research results with the most advanced research in UE athlete psychology. We call it “Temporal framework for progressive UE engagement and passion development” and would like to invite the academic community to discuss it. We also invite sport psychologists and therapists to take a wholistic view on non-professional and passionate UE athletes and provide guidance and interventions considering the context of the whole journey and their identities. Further, adding an “outside perspective” would be most valuable, starting with the entourage (family and friends) of the athletes.We believe that UE helps athletes to navigate their lives in our post-industrial and post-modernist world in the pursuit of a coherent self-identity, satisfaction of their meta-needs, happiness and fulfilment.S1 Fig(TIF)Click here for additional data file.S2 Fig(TIF)Click here for additional data file.S3 Fig(TIF)Click here for additional data file.


Within our study, trans* and gender-diverse individuals described encountering multiple and diverse barriers when seeking gender-affirming care in the Netherlands. Future studies are needed to evaluate whether individualized care, the decentralization of care, and the use of decision aids can improve the experienced barriers of trans* and gender-diverse individuals seeking gender-affirming care within the Dutch healthcare system.When seeking gender-affirming care, trans* and gender-diverse individuals often describe experiencing barriers. However, a deeper understanding of what constitutes such barriers is generally lacking. The present research sought to better understand the barriers trans* and gender-diverse individuals experienced, and their effects, when seeking gender-affirming care in the Netherlands. Qualitative interviews were conducted with trans* and gender-diverse individuals who sought care at a Dutch multidisciplinary medical center. Twenty-one participants were included, of which 12 identified as (trans) male, six identified as (trans) female, one as trans*, and one as gender-nonconforming (GNC)/non-binary. The interviews were mostly conducted at the homes of the participants and lasted between 55 min and 156 min (mean = 85 min). Following data collection and transcription, the interviews were analyzed using axial coding and thematic analysis. A total of 1361 codes were extracted, which could be classified into four themes describing barriers: lack of continuity: organizational and institutional factors (n Research has shown that access to gender-affirming care greatly improves the mental health and overall wellbeing of gender-diverse, transgender, and non-binary individuals ,6,7,8,9.In recent years, gender-affirming care options have become more accessible, provider education has become more available, and the literature regarding gender-affirming care has grown ,19,20,21In order to understand the concept of barriers in care, there must first be an understanding of an individual’s access to said care. For the purpose of this research, an individual’s access to care is viewed ‘as the possibility to identify health care needs, to seek health care services, to reach the health care resources, to obtain or use health care services and, to actually be offered services appropriate to the needs for care’ . AccordiIn an effort to mitigate the number of barriers that individuals report experiencing globally year after year, more and more research studies are being conducted in order to further identify and understand the experienced barriers to care that trans* and gender-diverse individuals face when seeking gender-affirming care. While research into the barriers that trans* individuals face within healthcare is necessary, it is important to conduct this research in a way that avoids becoming “damage research”, or, rather, research that primarily documents the harms experienced by marginalized communities without addressing the underlying causes or effecting change . Well-meAt present, most studies regarding experienced barriers to gender-affirming care have been primarily conducted in North America and the majority of the reported barriers are contingent on organizational and institutional factors ,43,44,45At the data collection stage of this study, approximately 95% of trans* and gender-diverse individuals seeking gender-affirming care in the Netherlands received their treatment at a specialized gender center in Amsterdam . In a DuA recent survey in the Netherlands found that 67% of adult trans* and gender-diverse individuals have waited more than 18 months for an initial intake and hormone treatment, and another median of 6 months before surgical intake . As of AThe qualitative data obtained in this pilot study formed part of a larger research project with the objective of developing a patient-reported outcome measure based on the experiences of trans* individuals . The larAt the gender center, the gender team includes various departments and medical professions. The team consists of healthcare providers from fields such as psychology, psychiatry, endocrinology , gynecology, and plastic surgery. Additionally, urology, dermatology, ENT , speech therapy, surgery, and facial surgery are also involved based on individual treatment wishes.Access to the facilities was granted upon referral by a general practitioner. Generally, individuals began with consultations with a psychologist, where they discussed their experiences of gender incongruence, their needs, and the available options for gender-affirming interventions. The diagnostic procedure typically lasted 6–8 months with monthly visits. The process concluded with a multidisciplinary team evaluating the individual’s eligibility for gender-affirming care. While not all individuals desire a hormonal transition, hormonal treatment follows the diagnostic phase. If individuals had already started hormone treatment somewhere else, treatment would be continued with potential adjustments. During gender-affirming hormone treatment, individuals had appointments every 3 months with an endocrinologist and a psychologist. On average, most individuals will have had at least 12 months of hormone replacement therapy before qualifying for gender-affirming surgeries.Public funding covered diagnostics, hormonal therapy, breast removal, and genital surgery, while other surgeries were not included. Facial hair removal (up to 10 appointments), psychotherapy, and speech therapy were covered, and facial surgery was only covered in exceptional cases. At the time, the Amsterdam clinic followed the Diagnostic and Statistical Manual of Mental Disorders, fourth edition, text revision (DSM IV-TR) classification system, and until 2014, sterilization was required for legal gender change. Since the 2014 change in legal requirements, more flexibility in individual treatment pathways has occurred.Eligible individuals were aged 16 years or older, had received a diagnosis of “gender dysphoria”, had initiated or completed the process for gender-affirming procedures in the Netherlands, were fluent in Dutch or English, and were capable of providing informed consent. The research team or their healthcare providers from the Amsterdam University Medical Center, peer support groups, or social media approached eligible participants for recruitment. Purposeful sampling was employed to ensure a diverse range of participants in terms of age, gender, and healthcare history. Recruitment took place over a three-month period (August 2018 to October 2018). Participation was voluntary, and it was emphasized that their involvement would not influence their future care. All participants in this study had either received or expressed a desire to receive gender-affirming surgery. Each participant received a EUR 50 gift card as a token of appreciation, which they were informed about after their participation in the research.The in-person, one-on-one interviews were conducted by the first author (M.R.), a non-binary-identifying psychologist and trained interviewer with previous experience in qualitative research. The majority of the interviews took place at the participants’ homes and had an average duration of 85 min, ranging from 55 min to 156 min.A semi-structured interview guide was utilized, covering a wide range of topics such as healthcare experiences, procedure outcomes, recovery, mental health, and body image. This guide allowed participants to provide detailed accounts of their experiences and perceptions of the current healthcare system . The intThe participants had the freedom to pause or terminate the interview at any point and were also able to withdraw from the study during or after the completion of the interview. All participants completed the interview in a single session, and no participant chose to withdraw or provide comments or corrections on the interview transcripts.All interviews were audio-recorded and transcribed verbatim. Subsequently, for use in the larger project, the transcripts were translated into English and anonymized by removing personal identifiers . For theFollowing the approach outlined by Braun and Clarke, thematic analysis was employed to analyze the data . InitialAs a queer, non-binary individual who identifies within the LGBTQAI+ community, M.R. acknowledges that their personal experiences and identities may have influenced their understanding and interpretation of the data. Being a part of the queer community, M.R. can bring valuable insights and perspectives into the research process, enabling a more nuanced analysis of the findings. However, it is important to acknowledge that their personal experiences might introduce biases that could impact the interpretation of the data. To mitigate this, M.R. took measures to reflect upon their own positionality and biases throughout the research process, engaging in an ongoing self-reflection and seeking feedback from colleagues to ensure rigor and diverse perspectives in the analysis.T.G., a cisgender, gay man, in addition to supervising this qualitative study, helped with the thematic analysis of the data. While T.G. does not share the same lived experience as trans* individuals, his experiences as a member of the LGBTQAI+ community may have influenced his understanding and interpretation of the data. To address this, T.G. actively engaged in critical self-reflection, sought diverse perspectives, and engaged in discussions with his colleagues throughout the analysis to ensure the findings were accurately represented. T.G. also endeavored to approach the data with openness, empathy, and a commitment to understanding the unique experiences and challenges faced by trans* individuals seeking care.As a heterosexual female medical student, H.J. played a role in the thematic analysis for this qualitative study. Her personal background and sexual orientation may differ from the experiences of trans* individuals accessing healthcare. It is essential to acknowledge that her own perspectives and biases could have influenced the analysis process. To address this potential bias, H.J. actively engaged in critical self-reflection and sought input from diverse voices throughout the analysis process. H.J. approached the data with an open mind, a commitment to understanding the unique experiences of trans* individuals, and a dedication to representing their voices accurately.A total of 57 trans* and gender-diverse individuals were invited to take part in this study; 21 responded and consented to participate (response rate  =  37%). The reasons for not responding to the invitation were not recorded. The participant characteristics are displayed in codes = 546), patient–staff dynamics (ncodes = 480), inadequate information and support (ncodes = 210), and lack of autonomy in decision making (ncodes = 125).A total of 1361 codes were extracted, which were classified into four themes describing barriers: lack of continuity: organizational and institutional factors  impact the waiting lists and wait times had on their psychological wellbeing, and also described feeling frustrated and as if they were not moving forward within their transition.“Because for them it’s ‘Oh you just have to wait a year, you know it’s really a thing that you really have to put a lot of thought into.’ For me, it’s just…I was ready the day that I found out and I started preparing everything… by the end of the month, I was already living as a man at work, at school, and in my private life, and then having to go a year and a half without hormones. It’s so humiliating… Humiliating. It is so bad.” , genital surgery Participants described feeling, within the current healthcare system of the Netherlands, as though there was little room to customize their transition. As a result, the participants described experiencing a system that was unable to accommodate their individual needs and, thus, care preferences. Additionally, some participants objected to a standard trajectory, citing that it is “a limited view on care for trans* people because not everyone experiences dysphoria in the same way”.“I think that I would like to see such an organization where they are not trying to put you in a certain box of you are this, but that there is actually a kind of openness in every step. Also, in the order in which you want to do things. For example, I know a couple of pioneers at the VU because they first had chest surgery and now, they go to the hormones. That is a pretty special order of things and I think that it is very important that those things can be done.”The participants suggested that certain protocols and policies were not beneficial to trans* individuals seeking care. Within gender-affirming care, this is mainly related to the mandatory waiting time and the conditions required to gain access to gender-affirming care . Oftentimes, additional trans* protocols and policies were non-existent within the organizations and departments at the hospital that are not specialized in gender-affirming care. Many participants described situations where cisgender-oriented protocols and policies were inadequate in ensuring trans-appropriate care, and some participants noticed that the health professionals of these departments were more likely to misgender participants or treat them differently.“I had to have an echo and I had previously agreed with my doctor that we would do this via my stomach. Once I got to the echo place they refused to do it via my stomach, so I left. Where is the communication then? Where is the connection between the departments?” )Ultimately, the participants described the aforementioned institutional and systemic barriers as weighing heavily upon not only their trust (or lack thereof), but also their feelings of safety within the hospital setting. The participants described that such experiences only continued to perpetuate their feelings of being misunderstood and undersupported when seeking gender-affirming care.The participants described often experiencing a lack of knowledge and understanding from their healthcare professional(s) regarding their gender identity and desired gender-affirming care choices. The experiences described ranged from mental healthcare professionals within the specialized gender-affirming care being unfamiliar with non-cisgender identities to physicians specialized in gender-affirming care invalidating certain trans* identities by maintaining a binary perception of how transitioning should look.“…the psychologist didn’t take me serious at all. They were like okay, this is a thing…a fetish or something, you know? And I felt like I was totally not taken seriously then…” “The surgeon came to me afterward, and totally didn’t have any understanding of it all. They said: Now you have to watch out with tampons. I think: Do you really think I put a tampon in there?” )“gender dysphoria” and various gender identities, they did not necessarily have the proper knowledge, training, or experience to best serve them.Oftentimes, the participants described feeling like they needed to educate their mental healthcare provider regarding their gender identity and subsequent healthcare wishes. Some described experiencing that, even when their mental healthcare professional within the specialized gender-affirming care was familiar with “They are helpful and everyone tries to empathize, but it is as if you are trying to explain to someone who has never been in love what being in love is. Everyone hears you and everyone is polite to you, but nobody really gets it.” “I think that a lot of people who have worked for years for [organization], that they still look through the glasses of the 80s or 90s. And continue to use the same procedures and thought processes. I don’t know if that is still appropriate.” Generally, the participants described that when approaching gender-affirming care, they were already anticipating experiencing barriers in care and, thus, they described having a reluctance to seek care, a fear of being denied care, and anxiety in seeking care. Oftentimes, the inappropriate care that the individuals described experiencing was due to a lack of understanding and training among healthcare providers. For example, a lack of appropriate accommodations played a major role for AFAB participants who had gynecological procedures—often placed in the same space as cis-identifying females with cis norm protocols.“I had to check in at the obstetrics and gynecology ward. And you could just hear this record scratch when I arrived. I had to be there a day before the procedure and I just felt so small, I felt humiliated and I felt like everything I had achieved up until that point was gone in an instant. I know it’s their specialty, but I just wish I had had a bed on the traumatology ward or something.” , genital surgery )Some participants also described being less likely to disclose how they really felt with regard to their gender identity for fear of being denied access to gender-affirming care. As a result, the participants, if they were able to, would search elsewhere for a different mental healthcare professional with more knowledge and/or experience.In order to improve care, the participants emphasized that healthcare professionals should be better educated on the various gender identities, so that providers can then “understand it better, that they take it seriously.” The participants specifically emphasized that healthcare professionals should be better trained in providing gender-affirming care.“I just think that it is important that all kinds of different professionals in that area around that gender team are also aware of all those different identities. I do not mean knowing 100 million gender identities and pronouns that exist or something like that, but more, for example, that it is important to know the difference between, people who identify themselves as agender or people who identify themselves as gender fluids because it can simply have different kinds of consequences.” When asked about how participants had received information, the opinions of the participants about the quality and the quantity of the information varied. Among the participants who described being well informed, some individuals added that they would have liked to receive more information regarding fertility care and the trajectory of their transition at the beginning of their transition process. Those participants who described being poorly informed reported that the information provided about topics such as the psychosocial aspects of transitioning, sexuality, the physical effects of HRT, and alternative healthcare professionals was insufficient.In several instances, participants described needing help coming to terms with their gender identity and/or care option(s) for “gender dysphoria” before even considering gender-affirming care. Some participants described that when they tried to seek such care at gender-affirming care centers, they were denied that care without a further recommendation for psychological care elsewhere. They described experiencing that there was a lack of transparency in the care options and what care was or was not available, and why.“[Fully transitioning] was the only thing they could help me with, they said: ‘Yes, you can go through that process now.’ But at that time, I didn’t dare. Because back then I knew that if I had to do that, I had to tell my school everything, I had to tell my family everything, I hadn’t told my family at all, I hadn’t told anyone at school, not even my friends. So, I didn’t like that at all. I thought it was way too scary… way too big of a step for me. And then they actually said at the VUmc, ‘Well, if you don’t get the gender-affirming treatment, then don’t.’ It was either do it or don’t. So, then I didn’t and then I was gone. And then I thought, well, that was the only place I could go for my problem. And they couldn’t help me.” .Despite the fact that the participants had routine check-ups with mental healthcare professionals throughout the beginning of their transition, many participants described experiencing a lack of psychological support overall. Most prominently, the participants described a lack of support regarding the psychological impact that different aspects of gender-affirming care can have upon the individual. For example, the participants described experiencing a lack of guidance regarding the physical effect of the HRT both during and following their transition. Of the participants who had received gender-affirming surgeries, all reported that the mental health check-ups ceased post-operatively.“Yes, you’re guided relatively intensely psychologically and medically before you transition, but during the transition there’s relatively little guidance. The surgeries had a lot of impact for me and I had some good guidance throughout, but because I sought it out myself. It isn’t standard practice, and it should be. Medically, you’re sent home, but without proper explanation. You don’t really know what to expect. That could be improved upon.” , genital surgery )Another important aspect of seeking gender-affirming care is the individual’s social transition. Coming out within the individual’s social environment is a major component for both trans* individuals who do and do not wish to medically transition. Many participants described being uncertain about how to ‘come out’ to different groups within their social environment. Participants described being unaware of the societal expectations and implications of the gender role typically associated with their gender identity. Due to a lack of guidance, they felt ill-equipped to meet these expectations and cope with the resulting implications.“There is no explanation like… ‘You are going to look more masculine. Remember that you look more threatening to people, keep that in mind.’ There is no guidance for transgender women… ‘Remember if a gentleman offers something to drink then he wants something from you. You look different.’ There is no guidance in there.” )Moreover, the participants described encountering situations where providers contradicted one another, exaggerated the negative aspects of gender-affirming care, or even shared false information.“Every time I would come from one of those particularly heavy appointments I would just come back and just tell my friends I have no idea what she told me and this bad thing could happen or maybe I am not even able to get the surgeries for this or vague reasons that she didn’t know how to explain and it’s not true when I actually get there. I get that they are trying to manage your expectations but it is HARSH…and it is weird because it’s not…it is health care…so to exaggerate the negative consequences so much…why? Its… it just felt really…there were some dark days there where I really had to think well I have to do this because the alternative I can’t bear…so I have to keep going, even if it’s terrible…but now that I am actually there…and it has been okay.” Also, participants expressed a need for the provision of more timely and comprehensive information, as well as peer discussion groups and more descriptive reviews of the procedures and post-operative reality.“Like I would have wanted to hear more clearly: now we’re going to do hormones for a year and then you can be prepared for the laser treatment, but then you have to apply for it in time. If they had said that all a little more clearly, and also about what was expected of me, it would have been easier for me.” .“I really missed hearing other people’s experiences. What I did need was their opinions on the changes; which surgeries they had, and especially about how they felt about the results.” )Inadequate information and support left many participants with suboptimal guidance throughout the duration of their transition, especially post-operatively and once their transition trajectory was completed. The participants recommended providing better support during the social transition phase, as well as more thorough aftercare regarding post-operative sex following genital surgeries.“To move around in the world after a transition is sometimes more than just the physical change and possible speech and voice corrections. Sometimes movement therapy and/or behavioral lessons are needed to make someone more feminine. Also, dos and dont’s around the use of makeup hair, and how to dress . It is good to point out things to prospective women that they should pay attention to because many of them do not see it for themselves and nobody points out them. Like moving and presentation of them/themselves.” , FFS, chondrolaryngoplasty, genital surgery (vaginoplasty), voice surgery (glottoplasty))Within the decision-making process, the barriers individuals described experiencing were most often related to (1) the concept of gatekeeping and (2) a lack of autonomy. The participants described that experienced gatekeeping was one of the major barriers in seeking and obtaining gender-affirming care. Most participants described how access to gender-affirming care felt entirely dependent on the decision of their healthcare professional, even when they had given informed consent to proceed with their transition.“Yea, it is [the gender team’s] choice…and it isn’t even the choice of the psychologist you talk to—it is the choice of the whole gender team. They have never even seen me.” The participants experiencing their healthcare provider(s) as a gatekeeper presented three key concerns. First, the participants reported being extremely aware of the control healthcare professionals had over their access to gender-affirming care. Therefore, not only did most participants describe being very careful about how they would present themselves to their healthcare professional, but they also described being hesitant to disclose personal information that might jeopardize their access to said gender-affirming care. Secondly, many participants described experiencing that they had to explain and defend not only their choices, but themselves, and, ultimately, their bodies to their healthcare professionals.“But I did feel like … I would say they [mental health care professionals] have this just black and white thing that you have to be transgender enough to get the care and that…that felt really bad as well.” Thirdly, the participants felt that they had no choice but to accept the conditions of their healthcare professional and healthcare system in order to gain access to gender-affirming care, even if they did not agree with their providers’ point of view. One participant described feeling that, despite feeling like nothing was wrong with him, he had to agree that something was “wrong” with him in order to receive the care he needed.“There is nothing wrong with me. But she kept hammering a bit on it…so then I felt I had to agree in order to get the care I needed.” Additionally, the participants also reported experiencing that healthcare professionals often disregarded their individual needs and care preferences when making care decisions. As a result, the participants described feeling excluded from the decision-making process.“…the fact that someone decides what your identity should be because it’s technically easier is pretty insane. So, I think it’s important that they know what kind of impact that can have. They didn’t really talk about that; it was more indirect than that.” , genital surgery )Even when participants had the opportunity to make an autonomous decision, they described experiencing that they were either not made aware of alternative care options, or that they experienced being guided towards a certain care option, thus inhibiting the participant’s self-determination and further ability to gain access to desired and appropriate forms of care.“I have had a lot of discussions directing me towards the colpectomy and I felt like the plastic surgeon was trying to guide me towards certain care pathways. There are still standard forms of care and I know that some things are surgically easier to perform and result in fewer complications, but I think it can be very important for someone to choose an operation with more complications if the results suit their wishes more.” , genital surgery )Several participants felt as though their provider’s decision regarding treatment options weighed more heavily than their own treatment wishes, ultimately leading the participants to feel as though they needed to agree with the provider’s treatment pathway even if it was not fully what they wanted. The participants suggested including the individuals seeking care in the decision-making process by acknowledging their individual needs and care preferences, as an attempt to remedy the aforementioned barriers.This explorative study identified some of the experienced barriers in care that trans* and gender-diverse individuals face when seeking gender-affirming care in the Netherlands. It was the first in-depth study of barriers in an insured specialized multidisciplinary healthcare setting. Four themes emerged from the thematic analysis: lack of continuity: organizational and institutional factors, patient–staff dynamics, inadequate information and support, and lack of autonomy in decision making. Experiencing one, or all, of these barriers can impact an individual’s mental and physical health, as well as their trust in the healthcare system in general. These barriers will subsequently be discussed in the light of the larger transition gender-affirming care provision and its providers that individuals are going through.When seeking care within insured specialized multidisciplinary centralized health centers, as in the study setting, insured care generally requires adherence to standardized protocols and regulations. For example, in the Netherlands, insured care requires a specific diagnosis based on the Diagnose Behandel Combinatie (DBC) (diagnosis treatment combination) in which the amount of reimbursement for treatments are predefined. In theory, standardized protocols allow for more consistent and predictable care delivery . HoweverThe (im)balance of power between healthcare professionals and individuals seeking gender-affirming care was an important topic during the interviews. Consistent with the current literature, the participants of this study described how they experienced an imbalance of power in three main ways. First, within the current decision-making model, healthcare professionals have the ability to grant or deny access to gender-affirming care, thus, from the participants’ perspective, taking on the role of the ‘gatekeeper’ ,77,78,79In order to facilitate decision making, access to evidence-based and comprehensible information about gender-affirming care is required. While the concept of informed consent is based on the principle of respect for one’s autonomy, shared decision making is a synergistic process between the individual seeking care and the healthcare professional, which involves introducing choices and goals, comparing alternatives, and discussing decision-making roles ,90. DespThe concept of the gender binary—allocating individuals into two categories, (trans)male and (trans)female—assumes that gender identity, expression, and role inherently align with one of the two. This concept itself excludes the possibility of trans identities outside the gender binary, such as non-binary, genderfluid, and genderqueer. This assumption also suggests that individuals who identify within a specific gender identity all have similar needs, healthcare wishes, and preferences . However, previous studies have shown that Dutch trans* and gender-diverse individuals seeking gender-affirming care identify within a range of non-cisgender identities and that the needs and care preferences of these individuals cannot be solely determined based on their gender identity ,103,104.Historically, medical and societal norms were based on a binary, heteronormative, cisgender framework that led to a “narrow” model for trans* care (and legislation) , which, In recent years there has been a growing recognition of the importance of taking into account local and cultural contexts when providing gender-affirming care. This recognition acknowledges that the needs and experiences of trans* individuals can vary across different cultures, communities, and regions . As a reThere were several strengths to this study. While previous research has identified barriers to gender affirming-care in a Dutch specialized multidisciplinary healthcare setting, this was the first study to qualitatively assess specific barriers. The sample participants were diverse in their gender-affirming care options and age range, although some participants had received care before 2014 and were thus subjected to a more binary and protocolled form of care . The interviews were conducted with a queer-identifying psychologist trained in qualitative interviewing and took place mostly at individuals’ homes, or where they felt the safest. Although there were strengths to this study, some limitations may be noted. The method of participant recruitment and selection may have introduced selection bias into this study ,107,108.Trans* individuals experience barriers to gender-affirming care, some of which are also experienced in non-specialized gender-affirming care. Reducing these barriers requires implementing and locally adapting guidelines, and further shaping shared decision making in this field. The current study provides tools to target this, specifically focusing on adapting the organization of care to reduce waiting times, increasing empowerment of trans* individuals, and support for shared decision-making models. Additionally, recommendations are given regarding education encompassing more inclusive norms and values, and increased gender sensitivity.To improve trans* research, it is important to center the voices of trans* individuals, prioritize participatory approaches, and uphold ethical considerations. This shift can promote social justice and positive change for trans* communities. Actively engaging policymakers, healthcare providers, and stakeholders through dissemination, collaboration, advocacy, education, and dialogue are ways in which research findings can be effectively translated into meaningful policy reforms, practice improvements, and interventions that address and overcome the barriers faced by trans* individuals.Future studies are needed to evaluate whether trans-inclusive protocols, the decentralization of care, and the use of decision aids can reduce the barriers experienced by individuals seeking gender-affirming care within the Dutch healthcare system.


Sexual and gender minorities (SGM) experience higher rates of discrimination and violence when compared to cis, heterosexual peers. However, violent crimes and other hate incidents against SGM persons are consistently not reported and prosecuted because of chronic distrust between the SGM community and police. Brazil is one of the most dangerous countries for SGM persons globally. Herein, we describe the development of a mobile health intervention to address the rampant violence against this population, the Rainbow Resistance—Dandarah app.We conducted community-based participatory research (CBPR) between 2019 and 2020. The study started with in-depth interviews (IDIs) and focus group discussions (FGDs) with representatives of the SGM community from Brazil. Descriptive qualitative data analysis included the plotting of a ‘word cloud’, to visually represent word frequency, data coding and analysis of more frequent themes related to app acceptability, usability, and feasibility. A sub-sample of SGM tested the app and suggested improvements, and the final version was launched in December 2019.Since the app was launched in December 2019, the app recorded 4,114 active SGM users. Most participants are cisgender men (50.9%), self-identified as gay (43.5%), White (47.3%), and aged 29 or less (60.9%). FGDs and IDIs participants discussed the importance of the app in the context of widespread violence toward SGM persons. Study participants perceived this mHealth strategy as an important, effective, and accessible for SGM surviving violence. The CBPR design was highlighted as a key strategy that allowed SGM persons to collaborate in the design of this intervention actively. Some users reported how the panic button saved their lives during violent attacks.Rainbow Resistance—Dandarah app was endorsed as a powerful tool for enhancing reporting episodes of violence/discrimination against SGM persons and a key strategy to connect users with a safe network of supportive services. Results indicate that the app is an engaging, acceptable, and potentially effective mHealth intervention. Participants reported many advantages of using it, such as being able to report harassment and violence, connect with a safe network and receive immediate support. Over the past decade, Latin America has stood out for recognizing sexual and gender minority (SGM) rights. Outside of the Caribbean, most countries in the region have decriminalized same-sex sexual acts between consenting adults. In most countries, SGM individuals are constitutionally protected from discrimination based on their gender and/or sexual orientation. Latin America has also made impressive progress on marriage equality. In 2010, Argentina became the first country in the region to approve same-sex marriage, followed by Brazil and Uruguay in 2013, Colombia in 2016, Ecuador in 2019, Costa Rica in 2020, and Chile in 2021 And check it out, I gotta fill all that stuff before pressing the panic button… I mean, it’s impossible, right?Yeap, it’s like, ‘Hey yow, I know you wanna attack me, but chill, man… Wait just a sec until I fill all that stuff, and then you attack me, okay?She is dead already… [laughs]I mean, this gotta be quickly, right?”“- Y’all, this app is like… It’s fierce! Like, they got together Fiocruz, ANTRA [Brazilian National Transgender Association], and ABGLT [Brazilian National LGBTQ + Association]. That’s dope!So, we want to thank you for the opportunity for us… I speak on behalf of everyone here so that we can speak out, understand?I’m emotional here…” [cries]The revised app was launched in December 2019. It became a formal strategy from the Brazilian Ministry of Health through an active partnership with the Oswaldo Cruz Foundation, its core research branch.Feasibility was defined as the extent to which the program could be made readily available and implemented among the SGM from Brazil. Most participants perceived the app as a huge success and understood that it would be available soon after the pilot tests and features review was finished.Feedback on the app’s look, feel, and content was also gathered to enhance acceptability. Participants requested the inclusion of additional information such as legislation, addresses of local services, non-governmental organizations, shelters, etc. A few participants also suggested additional features highlighting success stories of well-known SGM activists and not-so-well-known members of the community as well. Those features are under development.Following the pilot testing, our team reviewed all suggestions and improved/revised a few app features. Between December 2019 and August 2022, over 4,000 SGM persons have been using the app to report violence, crowdsource information about safe places for SGM persons, and connect with other users to offer support for violence survivors in need.Unfortunately, during the COVID-19 pandemic, the levels of violence against SGM persons from Brazil were even higher: around 1 SGM person was murdered in the country every day between 2020–2021. Levels of physical and sexual violence were also rampant but continued to be under-reported to local authorities. The Rainbow Resistance—Dandarah App helped to connect survivors with a broad range of services, including shelters, post-rape care, and pro bono legal, psychological, and social support. App users reported a deep sense of gratitude for having the app downloaded. Many even mentioned that it might have saved their lives, as we can see from the quotes below:“Doc, let me tell you… It was late at night, and I was waiting at the bus stop. Then a car approached me super slowly, and when it was in front of me, it stopped. I got the chills, you know? Four white men got out of the car, and I knew they wanted to beat me just by the look in their eyes… They started laughing and teasing me. One of them opened his pants and asked the others to hold me… I knew I was gonna be raped, and just like many Black trans women before me, I might end up dead in an alley… I quickly opened the app and touched the panic button as my last breath of hope. No more than 5 min later, three trans women showed up, screaming and telling them the cops would be there any minute. They are sex workers and happened to be on the other street, less than five minutes from me!! You know that when you press the panic button, it shares your location with friends, right? So, they knew I was in trouble. Those guys, I could see they were freaking out! They ran to the car and left me alone with my friends, no harm done. I was shaking and scared but safe. My friends took me home. I reported the incident on the app but didn’t go to the police… Like, they would laugh in my face, like always… I never used that bus stop again… [get emotional] Honestly, your app saved my life that night…” .“Like, I was living with my partner when the pandemic got really bad… He was a truck driver, and I was used to staying all by myself at home. He was always on the road, you know? But when COVID came, he was laid off… So, I was supporting him and the house… Like, I’m a sex worker, and he could only eat if I got laid with other guys, some of whom he knew… And changed… Like, he started drinking every day and got really violent with me. I don’t make a lot of money, so I had to save for the bills and groceries, right? But he wanted money every day to get drunk. One day I stood tall and said, “No! That’s enough! We will starve to death like this.” Girl, he got possessed! I never saw such a scary face in my life… And he punched me in the face, took my purse with all the money I got from the night before, and started kicking me really hard… I thought I was gonna die that day… But I had my cell phone in my pocket, and I don’t know how, but I managed to press the panic button when he was not looking. Guess what? A few minutes after, a client of mine, who is in the army, showed up at my door!!! He was arrested, and the social worker took me to a safe shelter. I mean, if it was not for your app and this panic button, I could be dead!” . “When things got bad, with COVID, you know? My life became a mess! I had no school, and all my classes were online… And my dad hates me. He really does. Like, he doesn’t accept a lesbian daughter, you know? And he was also working from home, so I was like… Trapped. He looked at me with hate in his eyes. I could tell… And my mom works cleaning homes all day long… I used to lock my door ‘cause I was really afraid… But one day, I forgot to lock my bedroom door and napped after my morning class… When I woke up, my dad was staring at me, and he said: ‘Now you will learn to like a man!’ I knew exactly what he meant… And he started taking off my clothes and put my hand inside his pants… It was sooo gross, OMG…, but I had my phone under my pillow, you know? And I pressed the RISE panic button, hoping my mom or someone else would see it… He beat me badly, and I don’t remember much after that… But when I woke up, my mom was home with a woman police officer, and they were taking my dad to jail… Then they told me that my dad raped me… [gets emotional] I’m still shaking just by telling you this… When they arrived, my dad had a gun and almost killed me, but I was unconscious… Thankfully the police arrived quickly and got him before that… My dad is still in jail and won’t leave any time soon, I’m seeing a psychologist that mom found on your app for free, and she is helping me… I’m still really depressed, you know? But I’m glad to be alive and free to be who I am. And my mom is also free from him… Thanks to this app, I’m still alive, and my dad is in jail…” .SGM persons frequently experience hate crimes, violence, attempts to change their sexual orientation forcibly and/or gender identity, and discrimination in education and employment settings, healthcare facilities and public spaces , 9. ThisThe current study presented the development and first feedback about the impact of a mHealth intervention for SGM persons from Brazil: The Rainbow Resistance—Dandarah. The strategy was developed to increase reports of discrimination and violent episodes and for providing support to SGM surviving those experiences in one of the most dangerous countries in the world for SGM persons: Brazil.According to participants, this mHealth strategy was perceived as an important, effective, and accessible strategy for SGM surviving violence. Other studies have implemented mHealth interventions to improve SGM’s mental health and quality of life –13. HoweAccording to initial results, the Panic Button is a highly important feature for SGM persons experiencing an assault. By pushing the red Panic Button, the app sends their current position and address (as a Google Maps link) to five numbers registered in their panic contact list. Such a list can be a true lifesaver, as mentioned by users’ feedback. There are many apps specifically developed for personal safety and violence prevention. However, the vast majority was not developed to address the specific needs of SGM persons .SGM persons usually have higher rates of mental health issues than people in the general population . SGM vioThrough crowdsourcing, app users can now access an updated feature that allows them to identify SGM-welcoming and safe services. This additional feature is key to improving SGM persons’ access to healthcare services. Several studies have identified that SGM persons experience additional barriers to accessing healthcare compared to the general population –21. By iBrazil is a country where at least one SGM person is murdered every day, and discrimination/violent episodes are highly underreported. In this context, the Rainbow Resistance: Dandarah App is not only collecting pivotal and inexistent data about violence and discrimination of SGM persons but also connecting those in need with a broad range of supportive services.Rainbow Resistance: Dandarah App. Future work is needed to evaluate the impact of app use over time, for instance, improving crime reporting to the police and/or improving access to healthcare.The current study included a large but convenient sample of SGM persons actively utilizing the Within the broad SGM community, transgender and gender non-conforming persons and racialized SGM persons experience a higher prevalence of discrimination and violence. Therefore, it is pivotal to consider the unique needs of this population and perhaps include additional features that might help to address intersectional discrimination that increases the barriers to receiving healthcare among specific subgroups of SGM persons.The SGM community experiences additional barriers to reporting experiences of discrimination and violence and accessing a broad range of services needed after an assault . Therefore, innovative approaches to improve the reporting of discrimination/violence, like the Rainbow Resistance: Dandarah App, are urgently needed for the SGM community. The presented results are descriptive and preliminary. Ongoing and longitudinal analyses are still needed and will be conducted over time.The usability evaluation was conducted during FGDs, with a moderator always present. The group setting and the presence of researchers may have inhibited participants’ responses. Therefore, assessing Rainbow Resistance: Dandarah App usability may be useful when no researcher is present, through self-report. Additional evaluations should include previously validated scales and a more robust design to identify the App efficacy.Despite those limitations, it is important to highlight that the intervention was conducted in one of the most dangerous countries for SGM to live in. Brazil records at least one murder of an SGM person every day, interventions are scarce, and violence/discrimination reporting is almost absent due to police SGM phobia and victim blaming. To the best of our knowledge, this is the first nationwide intervention implemented in Brazil that allows SGM persons to report violence/discrimination and access a broad range of supportive services. Additionally, the Dandarah: Rainbow Resistance App includes crowdsourcing and mapping strategies, allowing users to identify services that are more welcoming and accessible for SGM persons. Those additional features might be important to decrease barriers to accessing services among this highly vulnerable population.The Rainbow Resistance: Dandarah App results from a broad and collaborative work that included the Brazilian SGM community, healthcare professionals, researchers, and government representatives. The results of this pilot study indicate that Rainbow Resistance: Dandarah App is an engaging, acceptable, and potentially effective intervention. Participants reported many advantages of using the app, such as reporting violence, connecting with peers, and accessing help in real time. This study provides initial support for the acceptability and usability of Rainbow Resistance as a mHealth intervention designed by and for the SGM community from Brazil. The next steps involve further app refinement, including mental health screening, referrals, and more substantial feasibility testing. It is also essential to evaluate if app users can connect with healthcare services, stratifying by type of discrimination/violence experienced and by sub-population.