Diagnoses are powerful tools that fulfill various practical and symbolic functions. In this paper, I examine how a contested diagnosis called orthorexia nervosa has been taken up by users on Instagram, where tens of thousands of posts engage with the topic, many of them from individuals who identify with the condition. I put scholarship on medicalization and diagnosis in conversation with literature on subcultures to foreground the subversive work that is enabled through this diagnosis. Drawing on more than 350 hours of online ethnographic fieldwork and 34 in-depth interviews, I examine how participants construct a shared identity, draw on common language and norms, and undertake collective practices, as they negotiate dominant understandings of health. I show how they draw on the legitimacy endowed by the diagnostic label to validate and make sense of experiences of suffering but also to counter dominant health-seeking discourses, practices, and aesthetics in an online space where these are highly visible and valued. I also discuss some ways Instagram as a digital platform shapes its uptake by this community in meaningful ways. On the one hand, participants draw heavily on the language and framing of medicine to make sense of their fraught experiences with food and their bodies, effectively advocating for the medicalization of their own suffering while also creating a sense of community and shared identity. However, on the other hand, they actively use the diagnosis and the recovery process enabled through it to effectively resignify dominant beliefs, values, and practices that are experienced as injurious, including some that are particularly prevalent on Instagram. Diagnoses are remarkably powerful tools. As Jutel  has arguThe term “orthorexia nervosa” began to circulate in the late 1990s in the context of a growing obesity panic and corresponding anxieties about the nutritional intake of the population. This diagnostic label was proposed to describe a purported new eating disorder consisting of a pathological obsession with healthy eating, capable of disturbing emotional wellbeing and leading to malnutrition  has evidence to be true but has publicly downplayed, according to documents made public in the damning 2021 Facebook whistle-blowing account  had public accounts,3Following IRB approval, I created a new Instagram account specifically for research purposes, where I posted two selfies and a brief description identifying me as a researcher currently studying orthorexia on Instagram. In my profile, I included a link to my personal website, where I described the research in further detail. Throughout my fieldwork, I followed over 150 accounts, some of them very active and others posting sporadically, and came across hundreds of others as I navigated the platform and hashtags. Upon following an account, I consistently liked the posts when I encountered them in my feed, in an ongoing effort to make my presence known. Some followed me back. Aside from regularly observing posts and stories, I limited my participation to liking.My stints of fieldwork ranged between 15 minutes and six hours but typically lasted about two hours per day. I allowed my observation to flow across the platform, sometimes focusing on stories and other times focusing on posts. I also allowed myself to stray off the platform when users posted links or content from websites, blogs, and YouTube they wanted to call their followers’ attention to. This fieldwork was necessarily multimedial with an ongoing analysis of images, texts, videos, and other interactive features.I also conducted online, in-depth interviews with 34 of the users I followed. I initially reached out to 68 participants via an Instagram direct message and/or email. I made an effort to contact individuals who represented the various categories of personal accounts I identified as predominant in the orthorexia space during fieldwork: individuals in recovery (most common), recovered individuals, coaches, and a handful of health professionals , although there was widespread consensus that over-identifying with health and food was dangerous.The changes that took place during recovery were often troubling as they left individuals questioning who they were. As one young woman reflected on a post: “I’m afraid of letting go of that ‘healthy persona’ I’ve lived my entire life” . They also led individuals to experience a sense of marginalization or exclusion, either from their previous health and fitness communities or from the broader health-oriented culture. Charlotte, a 27-year-old in the UK, who had become very focused on fitness and clean eating, recalled the social validation she used to receive, both on and offline. “I had people coming up to me at the gym and people commenting, saying, ‘Oh, you look amazing,’ ‘You’re so dedicated,’ ‘How’d you get so lean?’ …People wanted to be like me,” she recalled. “Whereas, obviously, now I don’t get anything like that.” The status accrued through her past health-focused identity was difficult to let go of. However, through the diagnosis, she was able to reframe her health-obsessive—albeit status-building—past as pathological rather than ideal, while signifying her changes as healing.Recovery identities also provided new pathways to acquire status. In the recovery community on Instagram, this status was signified, in large part, through Instagram’s metrics in the form of likes, comments, and follower counts. Some of the people I followed had come to acquire thousands or even tens of thousands of followers. Most were aware of these numbers and many discussed strategies to grow their followings. As Anne, a 21-year-old in recovery, acknowledged, it is “intimidating when you follow accounts that have like the 15K million followers, and you’re like, ‘Oh, I have 200.’ And Instagram is all about getting those followers.” Thus, while the recovery subculture foregrounded very different ways of relating to food and eating, it also inscribed Instagram’s logics in other ways.Validation was central to this community. For instance, they validated that the orthorexic experience was real, dangerous, and deserving of help in a way that was not contingent on weight (like anorexia). As one young woman wrote in a post, “There is no ‘sick enough.’ Any eating disorder can kill. All eating disorders are dangerous and every sufferer, no matter their weight, needs help” (Fieldnotes 02/22/2018). Similarly, they validated decisions to change, something participants were often unable to find elsewhere. As Charlotte’s experience, above, shows, people outside of this context did not always understand what was “wrong” with their past behaviors, read as disciplined and healthy. Yet, since becoming a part of the community, “I do get a lot of comments from other people in recovery saying, ‘Well done, you look so much better…You look so much happier,’” Charlotte explained. Thus, in validating the realness of each other’s experiences and their decisions to change, they were also recognizing previous health-focused behaviors as disordered.Yet validation—like status—was contingent on a person’s ability to make themselves seen by others in recovery, which given Instagram’s architecture centered on personal networks, largely depended on their ability to amass followers. This required a degree of skill and knowledge about the platform’s technical features and an awareness of the social norms and practices that were rewarded on it. I observed many instances of people, especially those new to the community or with few followers and weak connections, failing to receive support on posts where they expressed distress. In other words, support, as a resource, was unequally distributed on Instagram, concentrating more heavily among accounts that were most popular.5Like those in other subcultures, individuals in recovery often employed distinctive ways of communicating with each other. Central to this project was the uptake of Instagram “captions” for personal reflections and thoughts, which more than operating as descriptions of the pictures posted, were used as personal diaries to reflect on their experiences. Through written and multimedia texts, participants developed shared ways of communicating, which, in conjunction, contributed to the creation of a distinctive group style.Therapeutic language commonly used in eating disorder treatment was prevalent in the recovery space. Through their interactions, those who had been in therapeutic settings transmitted it to those who had not. Most obviously, participants used diagnostic labels frequently in their captions and hashtags, alongside terms like “restriction,”  “binging,” (consumption of excessive amounts of food), and “purging”  to simultaneously describe and problematize the behaviors they were referring to. These behaviors were usually spoken about in the abstract.For example, in a video story, one participant admitted to her followers that she was struggling with “really wanting to restrict again” . Without requiring any further elaboration, this terminology both communicated to others that she was struggling with a compulsion to cut back her food consumption while framing the act as disordered, rather than, for instance, disciplined or controlled. Similarly, in another post, one user shared an experience she was proud of, where she had been able to eat and enjoy strawberries with sprinkled sugar on top, something her “orthorexic mind also would’ve SCREAMED at me” for doing in the past. In response, a friend she regularly interacted with reaffirmed her decision: “I am so proud of you for choosing nourishment over restriction” . This response drew on the shared language of “restriction” to frame the alternative option of withholding sugar as a form of restriction, which was tacitly reaffirmed as disordered and problematic.Other therapeutic terms came up regularly. The notion of “using behaviors” involved a more abstract and preferable way of referring to eating disordered behaviors such as those mentioned above . “Urges” referred to impulses to engage in disordered behaviors . “Compensation” described inappropriate attempts to make up for or revert the impacts of having eaten certain foods . “Slips” or “slip ups” described anomalous lapses in an otherwise consolidated recovery process . Unlike “relapses,” which signal patterned and recurring usage of disordered behaviors, “slips” were considered exceptional and thus not compromising recovery. “Triggers” were stimuli that were believed to set off or elicit disordered behaviors.Can I very gently say it can be difficult for people in recovery to see numbers? Mentioning the total pounds you’ve gained is not usually something we encourage in recovery circles and I’m sure with many of your followers being in recovery from an ED it may just be something worth taking into account. I love your message and page though! Posts by individuals struggling with their recovery often included “trigger warnings” or more frequently “TW” (or PTW for a possible TW) to caution that content could be experienced as triggering by others. This content usually involved some degree of explicitness in discussing disordered behaviors or number talk involving weight and nutrition . Users unfamiliar with these norms had to learn what was deemed triggering in the recovery context. Several newcomers I observed initially included calorie counts for all the meals they posted. However, they usually ceased doing this after realizing it was frowned upon—or on occasion, after getting called out. I documented one such instance in response to a post about weight gain by a user apparently unfamiliar with the norms, which contained exact weight details. Another user brought this to her attention:Following a cordial back and forth, the original poster removed the numbers, and the only traces left were in the comments prompting their removal. It was not just that sharing numbers was considered upsetting to others but that knowing and documenting numbers, an expression of surveillance and control of food intake, was seen as conflicting with recovery and healing.“Diet culture” was a pejorative term, widely used in the recovery space to refer to the dominant, healthist culture: a wide assemblage of discourses and practices promoting dieting and weight loss, which permeate media, health promotion, and industries selling wellness and fitness products and services. Diet culture was viewed as oppressive, injurious, and deceitful, contributing to body dissatisfaction and eating disorders. It was also a politically loaded term, directly alluding to the broader culture that was believed to be at fault for orthorexia. Some identified as “anti diet culture” or “diet culture dropouts” in their bios, and many wrote about it or invoked the term in posts, for instance, suggesting their body hatred was “something that diet culture taught me” .It makes me want to stop and scream in their faces: “PLEASE DON’T DO THIS!! YOU ARE MISSING OUT ON LIFE!!! YOU DON’T HAVE TO BE A SLAVE TO THE NUMBER ON YOUR SCALE OR THE ‘QUALITY’ OF YOUR FOOD.” Diet culture critiques often echoed academic commentary of healthism, underscoring the powerful but problematic entanglements of health and morality, and its ability to act upon the self. One dietitian described the concept to her followers, asserting that diet culture “tells us that our weight and the shape of our bodies is more important than overall health” and “tells you to not eat X, Y, Z because its ‘bad’; assigning morality to foods” . Indeed, many criticized the reductionistic labeling of foods, encouraging others to stop categorizing foods as “good” and “bad.” Commentary against diet culture also tended to challenge practices designed to externally surveil or control the body, such as weighing and logging calorie intake, instead encouraging others to achieve freedom by trusting their own bodies. Erica, who had a recovery account and blog, shared a post where she wrote about her exasperation with people adhering to these “health obsessed behaviors’’:Examining her own experience, she confessed that her anger derived from the fact that a part of her still wanted to participate, and how, despite having gone down that road and having “crashed and burned BIG TIME,” there was still “a little voice taunting” her, telling her it would work next time. Recovery is “so damn hard… when the world that surrounds us reinforces those voices by repeating the exact same things.” Thus, diet culture was described as working on the self through external pressure to conform but also through internalization, becoming “a little voice”—the orthorexia—that made recovery so difficult.In addition to their shared language and norms, participants in the orthorexia community adopted a variety of resignification practices through which they transformed the meanings of quotidian “objects” or signifiers, typically involving food and bodies. I analyze two common examples of this “bricolage” to illustrate how it was deployed in this community.Prior to recovery, individuals with orthorexia tended to have ample lists of foods that were off limits. These “fear foods” were typically items popularly read as unhealthy, such as those high in saturated fats and refined carbohydrates, whereas “safe foods” were more often vegetables and protein. As the term suggests, consuming even small amounts of fear foods was extremely distressing for many and often evoked overbearing feelings of shame, guilt, and even disgust. For those in recovery, these intense responses to food were read as indicative of the underlying pathology and thus needed to be overcome through practice, as explained by one recovery coach: “The more you expose yourself to those foods the quicker you will come to normalize them, and they will lose their power over you” .To overcome fear foods, participants individually or collectively took on “fear food challenges” in which they would force themselves to consume distressing food items. Amber, a recovered coach, explained the challenges associated with the process: “You’re going to go through digestive issues and anxiety and fears because you’re introducing all these…fear foods. The goal is to get to a point where food is just food to you, where nothing feels off-limits anymore.” Danielle, a former athlete, who used her account intensively during her recovery from orthorexia, explained she would post pictures of her fear foods and reflect on the experience in the captions: “I really used to kind of dig down and go through all of my thoughts about a specific fear food or just anything that I was eating, everything that went around it.”Sometimes, fear food challenges involved group dynamics like #FearFoodFridays, in which participants undertook the challenge collectively and chimed into a stream of associated posts using the hashtag. One ritualized fear food challenge were “pint parties,” in which participants trying to overcome their fear of sweets would attempt eating a pint of ice cream and share a picture with a caption about the experience see Fig. . Ben & JThis is not how individuals in recovery ate most of the time. To the contrary, most accounts were flooded with pictures of “safe foods” such as salads, zucchini oatmeal, nut butters, etc. The meaningful meals for the sake of recovery, however, were those that challenged orthorexia—that is, they were “unhealthy” from a normative point of view. Fear food challenges must also be understood in the broader context of Instagram as a digital platform where health- and fitness-oriented dieting proliferates. Hashtags like #cleaneating and #keto amass tens of millions of posts, where sugary, high-fat ice cream is out of the question. Participants were keenly aware of this and used their fear food challenges to talk back to the idea that these highly pleasurable foods were intrinsically unhealthy, arguing instead that they were a crucial part of a truly healthy diet, one anchored in freedom rather than obsession.A second resignification practice involved the reinterpretation of physical bodies, and perhaps more importantly, of certain kinds of physical change. Before-and-after pictures of bodies have long pervaded advertising for diet and fitness products, and more recently, have become popular on personal Instagram accounts of individuals documenting their own physical transformations.The practice of sharing before-and-after photos is widespread among the anorexia recovery community, where visibly emaciated bodies are compared with their improved, recovered version—with more fat. To an extent, these bodies have been restored from their extreme thinness to a state of “normality.” However, orthorexia-identifying individuals were not always under-weight to start out, and their transformations often countered mainstream images more starkly. In fact, the “before” versions were often of very muscular or “fit” bodies that could easily have been the “after” version of fitness transformation images. And that was precisely the point of these posts: to bring into to question the widespread celebration of “ripped” bodies, to instead argue that the work it takes many people to produce them can be damaging.This is not the before and after image you are used to seeing in the media. This is the before and after picture of a person who suffered in silence for over a decade, going across the entire spectrum and variety of eating disorders. Aside from using counter-normative images in the before and after slots, the resignification work was achieved through overlaid text in the image or captions that provided context for the “truth” behind the pictures. One example of this was a post shared by Ella, a recovery coach with a popular motivational account amassing tens of thousands of followers. The before and after image contained, on the left, a picture of herself some years earlier, holding up her shirt to show her six-pack abs, and on the right, a more recent picture where she is sitting in her underwear with thicker legs curled up and showing tummy rolls where the six-pack used to be. Ella began the post caption acknowledging:In the post, she described her experiences restricting, binging, purging, and over-exercising, and went on to list some of the rigid diets she had followed and her experiences body building. “On the outside, I looked like a healthy happy girl who was thin and fit. On the inside, I was ripping myself to pieces,” she revealed. The post urged caution in judging the weight gain of others, as they too may be suffering in trying to maintain lean or fit bodies. She added, “I would be lying if I claimed to love the after picture. But I recognize that hating the after body is something I learned from diet culture.” The post had hundreds of comments thanking her and praising her for sharing her struggles Fig. .Fig. 3PElla used the side-by-side format frequently not only to encourage her followers to celebrate non-normative changes in body size but also to criticize the filtered or highly produced character of Instagram photos more generally. For instance, she would compare two photos of herself standing versus sitting (and thus without versus with tummy rolls or cellulite), sucking her belly in versus relaxing it (and thus flat versus round), which she referred to as “Instagram versus reality” posts and were particularly popular. In doing so, she and others posting similar kinds of images were attempting to subvert ideals of what health looks like while also disrupting the before-and-after format in itself and its assumptions of what is better and worse.Yet, Ella’s posts were not counter-hegemonic in every respect. While her recovered body was larger than it previously had been, it also did not stray from the norm to an extreme degree. In some respects, she coincided with more normative beauty standards, including a traditional presentation of femininity , not to mention her position as a young white woman. Furthermore, her photos were evidently produced with great care, often foregrounding her physical body, in line with the mainstream Instagram aesthetic, all of which contributed to the success of her account—which she also used to provide recovery support services, some of them at a cost.This paper has examined how participants in the orthorexia recovery community on Instagram collectively use the diagnosis to negotiate the meaning of health and their relationship to it. I have drawn on a subcultural framework to illuminate how the diagnosis serves to create a shared sense of identity centered on recovery and restoration, which is enacted and developed through shared language, norms, and practices—a “group style” of sorts. Similar to other subcultures, these shared meanings and means of expression provide members with symbolic resources to negotiate dominant understandings of health while making sense of their own experiences and constructing viable identities Murdock . If we uThese meanings involve a complex relationship with the medical establishment and with medical logics more broadly. On the one hand, participants drew heavily on the language and framing of medicine to make sense of fraught experiences with food and their bodies, effectively medicalizing their own suffering while also creating a sense of community and shared identity. The use of a diagnosis—albeit unofficial—alongside a wide repertoire of medical language endowed these experiences with legitimacy, providing a means to acknowledge the distress and feelings of being out of control that had previously characterized their lives. This is not unlike other online forums and communities addressing contested illnesses, where participants reaffirm the medicalization of their own conditions, drawing on their lived experience Barker , 128. ThOn the other hand, participants actively used the diagnosis—and perhaps, more significantly, the recovery process enabled through it—to effectively resignify dominant health-seeking discourses, practices, and aesthetics that are experienced as injurious, including some that are particularly prevalent on Instagram. The practice of negotiating or contesting healthist discourses is not new in and of itself. For example, Phillipov  demonstrThe diagnosis was crucial to this process, creating an entry point for legitimately subverting widespread beliefs and practices about what constitutes healthy eating and erecting in its place an alternate paradigm. This framework signals an important rupture with conventional medical and nutritional knowledges that encourage, among other things, external regulation of food consumption, through calorie or macro-counting and weighing (think of the ubiquity of nutrition labels and recommendations) and moralized messaging about good and bad foods. By centering alternative values and bringing into question the intrinsic desirability and goodness of “healthy” foods, the recovery subculture resisted the reductionism, individualization, and decontextualization of health and illness that public health discourse is often criticized for , as was the lack of access to specific food items that were symbolically important to the subculture and which were often unavailable outside the US or Europe, or too expensive for some. The community was also largely made up of white, female (and apparently affluent) participants, which likely made the community less welcoming for participants of color and men.Here, I have focused on the community arising around a single diagnosis (an eating disorder) and on a single platform (Instagram). Future research would benefit from examining and comparing how communities around other kinds of health conditions  negotiate medical knowledge both on and offline and how different platforms may shape the practices and communities that form on them.This study has contributed to a growing body of scholarship about diagnoses and medicalization, showing how deeply powerful a diagnostic label can be without requiring institutional or expert endorsements. It has also shown the powerful lure of building community around illness experiences that have not been satisfactorily addressed by the medical establishment, which resonates with cases beyond orthorexia. Indeed, a historically white and male profession, biomedicine has a long legacy of biases in detriment of women and people of color, whose bodies have many times been sites of harm. The Covid-19 pandemic has served as a more recent reminder of how some groups have been left out of the medical dialogue, creating a real need to fill this void elsewhere. However, there are also real risks to this, as idiosyncratic knowledges and advice can be outright incorrect or fail to help individuals in distress. The pandemic has made clear the real dangers of misinformation online, which can circulate more quickly and at a greater scale than previously possible, often among communities of like-minded individuals.As diagnoses and medical knowledges more generally escape the confines of the medical establishment, it is pressing to understand how they are taken up and used beyond clinical settings. This requires acknowledging online spaces as very real and important sites for the formation of medical or diagnostic communities and for medical claims-making more generally. As this study has shown, these practices are both enabled and constrained by the media technologies where they come together. While digital ethnography poses real challenges, both methodologically and ethically, such methods are imperative for understanding communities like the one studied here and how they are shaped by their media environment.


With emerging evidence indicating that systems-based approaches help optimise suicide prevention efforts, the National Suicide Prevention Trial sought to gather evidence on the appropriateness of these approaches to prevent suicide among at-risk populations, in regional and rural communities throughout Australia. The Tasmanian component of the Trial implemented the LifeSpan systems framework across three distinct rural areas with priority populations of men aged 40–64 and people 65 and over. The University of Tasmania’s Centre for Rural Health undertook a local-level evaluation of the Trial.To explore key stakeholder perceptions of implementing a systems-based suicide prevention program in regional and rural communities in Tasmania, Australia.n = 25), Tasmania’s Primary Health Network employees (n = 7), and other key stakeholders (n = 14). Approximately half of participants had a lived experience of suicide. Data were thematically analysed using NVivo.This study utilised qualitative methods to explore in depth, stakeholder perspectives. Focus groups and interviews were conducted with 46 participants, comprising Trial Site Working Group members (Key themes centred on factors impacting implementation of the Trial. These included how the Trial was established in Tasmania; Working Group governance structures and processes; communication and engagement processes; reaching priority population groups; the LifeSpan model and activity development; and the effectiveness, reach and sustainability of activities.Communities were acutely aware of the need to address suicide in their communities, with the Trial providing resources and coordination needed for community engagement and action. Strict adherence to the Lifespan model was challenging at the community level, with planning and time needed to focus on strategies influencing whole or multiple systems, for example health system changes, means restriction. Perceived limitations around implementation concerned varied community buy-in and stakeholder engagement and involvement, with lack of role clarity cited as a barrier to implementation within Working Groups. Barriers delivering activities to priority population groups centred around socio-cultural and technological factors, literacy, and levels of public awareness. Working Groups preferred activities which build on available capital and resources and which meet the perceived needs within the whole community. Approaches sought to increase awareness of suicide and its prevention, relationships and partnerships, and the lived experience capacity in Working Groups and communities.Stakeholder insights of implementing the National Suicide Prevention Trial in regional and rural Tasmanian from this study can help guide future community-based suicide prevention efforts, in similar geographic areas and with high-risk groups.The online version contains supplementary material available at 10.1186/s12889-022-14721-5. Suicide is a major public health problem, with  rates inIn 2016, the Australian Government initiated the National Suicide Prevention Trial , recognising a need for building the evidence base on suicide prevention in regional Australia. Specifically, exploring how systems-based approaches can be used to address the complex issue of suicide, at the local community-level, with population groups most at risk , 16. TweTasmania was selected as one of the trial sites . AustralWhen exploring rurality, the Modified Monash (MM) Model remoteness classification can be used to measure remoteness, on a scale from category MM1 (major city) to MM7 (very remote). The Tasmanian capital city of Hobart is classified as MM2 , as is the second largest city of Launceston. The remaining parts of the state range between MM2 to MM5 . Making up the Tasmanian trial site were the Local Government Areas (LGA) of Launceston in Northern Tasmania , Break O’Day on the North-East coast , and the North-West Coast LGAs of Devonport, the Central Coast and Burnie  . Site seThe priority population groups for Tasmania were men aged 40 to 64 years and people 65 years and over. These groups were chosen by the Tasmanian Suicide Prevention Trial Advisory Group (TSPTAG)—the program’s overarching governing committee convened by the Primary Health Network, representing local service providers, peak bodies, and stakeholders. Priority populations were chosen based on a number of factors including analysis of local data on suicide deaths, attempts, self-harm and related risk factors and sufficient numbers of people and available services for these priority groups in each of the regions , 26, 29.LifeSpan framework  had an integral and fundamental role to play in the design of the trial. You know, identifying our target populations, where the trial was geographically situated, and in approving some of the initiatives. – Primary Health Network 6, femaleIn Break O’Day, a Working Group member described how having a host organisation already actively working in suicide prevention was perceived to have helped the establishment of the Working Group, this was commonly highlighted by participants across all the Working Group.…having had the mental health action group on the ground and already involved in that space gave us a little bit of a head start, because there were already some layers that had been put down to help this work. – Working Group member 10, Break O’Day, maleAnother Working Group member from Break O’Day found voluntary and committed Working Groups members was crucial to the establishment of the Trial in the area, providing the motivation needed to overcome challenges, including bureaucratic/administrative burden.The Working Group members’ voluntary approach, their passion for their community to enable this to be established, to bear with the process and the bureaucracy and continue, it’s a big commitment. – Working Group member 4, Break O’Day, femaleIt was commonly acknowledged across participant groups that there was a need for people with appropriate local and specialised knowledge to sit at the table and develop feasible action plans, as described by this Primary Health Network employee.“… for the Working Groups themselves to say, you know, have we got the right people around the table and if not, who else needs to be here? – Primary Health Network 6, femaleAcross participant groups there were variations with how the Trial was understood, for example the following Working Group member understood the Trial as aiming to use different approaches to reach the specific population groups.My understanding of the suicide prevention trial site is trialling different strategies and approaches to suicide prevention…a particular client demographic―men aged 45 plus and women 65 and older. – Working Group member 4, Break O’Day, femaleWhereas, this Primary Health Network employee understood the Trial would be an opportunity to explore a systems-based approach and how communities can utilise the selected LifeSpan framework to instigate positive change.The trial is an opportunity to test the systems approach… looking at community capacity to influence systems across the board using LifeSpan. – Primary Health Network 6, femaleAlthough the Trial was largely understood to be looking at the capacity of communities and utilising novel approaches to reach priority populations, the following External Stakeholder, a service provider, had an outlying perspective that it was a contradiction that the model itself was administered through Tasmania’s Primary Health Network and therefore, still “dominated by traditional health paradigms”.…how could we respond more effectively in terms of suicide prevention given those key target groups?… how could we develop the capacity of the community?…[the Trial was] a program that was about innovation and saying we need something different than traditional health paradigms… on the same hand, you’ve got an organisation [Primary Health Network], which is absolutely and utterly dominated by traditional health paradigms. – External Stakeholder 1, service provider, femaleAcross the Trial site there were standard governance structures guiding Working Group action, with several factors impacting how Working Groups planned and implemented suicide prevention activities in their local area. From establishment, the role of the Primary Health Network was seen across participant groups as essential to supporting the Working Groups, including the advisory (consultant) role, as described by these employees from the Primary Health Network.There is a lot of bureaucratic hurdles that the working groups and the Coordinators had to jump over and the [Primary Health Network] Consultant could actually support the coordinator and the Host Organisation through that process. – Primary Health Network 1, femaleIt was a lot of bureaucratic processes. You know, the action plans and reports and all of that and that we were able to provide that direct guidance around it. – Primary Health Network 4, femaleTasmania’s Primary Health Network acted as a “conduit of advice”, an access point or “connector” for information needed by the Working Group for activity planning and implementation. This Primary Health Network employee provides the example of the crucial partnership established with the Coroner’s office.The relationship that we built with the Coroner’s office, and, you know, for a Coroner’s office to offer an NGO access to some of the data they allowed us to access, you know, we had to prove to them that we could manage that data in a very sound and capable way…they may need organisations like a Primary Health Network or similar to enable that kind of conduit of advice. – Primary Health Network 5, maleWorking Group members across the Trial site discussed the administrative burden of implementing a systems-based approach at the community level. A more streamlined approach to bureaucratic processes was suggested as being needed, with the involvement of the Primary Health Network seen as an impediment to achieving this given the reporting requirements.It’s been quite restrictive, and I’ve seen the admin work that had to be done. There’s a lot of bureaucracy…we can see things that need to be done and we want to do them and we’re not able to do them…it’s not a lack of us wanting to, it’s a lack of resources being given and powers-that-be holding back, for whatever reason. – Working Group member 8, Break O’Day, femaleIn the initial stage things were quite highly directive, an unusual method…the level of hands-on by PHN [Primary Health Network] has been…not one I would endorse going forward… – Working Group member 12, Break O’Day, femaleThe importance of streamlined processes to access resources to be able to initiate action was also mentioned from this External Stakeholder, a member of the Tasmanian Suicide Prevention Community Network.Where you’re trying to get community-made action and suicide prevention, you need to make it as easy as possible…when they need resources, they need to be readily available alongside that. – External Stakeholder 10, Tasmanian Suicide Prevention Community Network member, maleAs explained by the following Primary Health Network employee, and supported across participant groups, many of these governance and administrative processes were driven by contractual obligations associated with participating in the Trial, thereby necessitating close involvement by the Primary Health Network to ensure due diligence was followed.This is part of a national trial. And that brings with it certain obligations and ways of working and accountability…we can’t just let money go out the door without knowing what it’s for, the evidence for it, how it’s going to be expended? – Primary Health Network 6, femaleAs described by the following Working Group members in the North-west, locally available social and physical capital influenced the makeup of the group and activity implementation.…we’ve become more community-focused, so that the people who are now on the group were already working in the community, making those kinds of connections…it’s shifted from top-down to ground level, where the work is really being done. – Working Group member 19, North-west, female.We utilised our existing organisations such as Men’s Shed, Rotary events…Sporting clubs, annual dinners… we utilised those existing networks. – Working Group member 19, North-west, femaleWorking Group members across Trial site locations described the role of the coordinator as central to Trial site operations, likening it to a relationship and management role, connecting the Trial with local communities.It’s nearly like a manager… supporting … giving advice, information, empowering them [the Working Group]. – Working Group member 4, Break O’Day, female.We’ve been really lucky to have a coordinator that’s gone right through [the trial period] because I think one of the things that we often forget is rural and regional people, are about people. – Working Group member 24, North-west, femaleAs described by the following Working Group member, lack of role clarity and decision-making structures manifested as inactivity, this was highlighted by all Working Groups.All the Working Group meetings were just conversations, nothing really got done…We didn’t think we could make those decisions because it’d have to be a group decision, but then the group didn’t think that it was their responsibility to make those decisions. PHN [Primary Health Network] didn’t want to make those decisions because they’re a funder…it was conflicting. – Working Group member 2, Launceston, femaleWhen looking at Working Group structural factors that influenced progress, community members with lived experience were acknowledged as a powerful enabler to both the design and implementation of activities, bringing a different perspective and much-needed energy. This was highlighted across all participant groups, and described by the following Working Group member.… they had the more ‘can-do’ approach that really changed the energy in the room…They came up with ideas… changed the way people thought about things… how do we make this work? How do we fix it?…How do we overcome it?” – Working Group member 2, Launceston, femaleOne External Stakeholder explained how every member felt that they had a purpose to be involved in Working Group activities, whether that related to a job role or lived experience.One of the things that I think was really missed in this trial as it was implemented here was actually picking up people who were genuine…Some of them had lived experience, some or everybody had some form of motivation to be involved… generally, they were picked up because they hold positions of some sort. – External Stakeholder 1, service provider, femaleThroughout the Trial, communication and engagement processes centred around accounting for individual learning styles and community literacy levels. Several factors impacted these processes, which then impacted people’s understanding of the Trial and activities implemented, and ability to engage in these processes. A Working Group member in Break O’Day described effective and timely communication as being essential to community engagement and managing community expectations.When it started off, the community engagement, there was a lot of work going on behind the scenes. I’ll be frank and say I don’t know that we have been on top of communicating our messages as we could to the community…when that happens after there’s been a launch in the expectations, people do need regular updates to see what’s happening. – Working Group member 12, Break O’Day, femaleEarly communication of the Trial to the community was considered essential to enable timely implementation of activities. This is described by the following Working Group member in Break O’Day, who perceived that the involvement and role of Tasmanian Trial site as a part of the National Trial was not initially communicated in a clear or timely manner.Why was the mainland announced and [Trial site location] wasn’t originally on there? And then we were later added… if we just knew straight up this is why we’re saying no to what we rather that you know where you stand, what you can work with and what’s reasonable. – Working Group member 5, Break O’Day, femaleAs described by this Launceston Working Group member, the engagement processes within the Participatory Action Research evaluation approach helped Working Groups unpack the different components of the Trial, including the role of stakeholders and key relationships needed.…all of those relationships, all of those times…the PAR process has been really good in unpacking some of those as well. – Working Group member 2, Launceston, femaleDifferent communication styles were described by the following Working Group member in Break O’Day as contributing to people interpreting things differently, a consideration when raising awareness of suicide and its prevention at the community-level, using a systems approach.There were different communication styles and things like that, so that was also challenging at times. People interpreted things differently. – Working Group member 25, Break O’Day, femaleWorking Group members across the Trial site experienced challenges in engaging and providing activities under the LifeSpan model, for the specific target groups that were supposed to be the focus of Trial. In Break O’Day, the following Working Group members describes the barrier of larger geographical distances as impacting access to target group. An older population of 65 + may not use, or frequently access, email or social media. For this cohort it was found that traditional communication methods, for example direct communication via word of mouth, or radio, were most effective.One of the barriers with such a widespread rural area … We have a community that…are an older population, so technology isn’t a way… [Host Organisation] uses the radio a lot… – Working Group member 25, Break O’Day, female…in our community, word of mouth seems to be the most effective. – Working Group member 4, Break O’Day, femaleFace-to-face activities were the most utilised activity format when engaging the male cohort. Taking the training to the priority groups workplace was described by this External Stakeholders, a member of the Tasmanian Suicide Prevention Community Network, as a method to help overcome participation barriers.[Hold events] in an environment like a Men’s Shed…They come to the Men’s Shed because they’re isolated, they come there. They don’t want to go and see the professionals over there. – External Stakeholder 5, Tasmanian Suicide Prevention Community Network member, maleIn the North-west site, one Working Group member noted that engaging senior-level representatives from workplaces with large numbers of employees in the priority groups, for example to sit on Working Groups, could increase participation of employees from those organisations.It would’ve been good to have had a HR [Human Resources] man from a large workforce…it’s all well and good to say, “We’ll go out and target male workplaces”. Good luck getting the employer to release these people from their paid jobs…backfill…pay other people to come along to training. Like, it sounds good in theory but in practice… – Working Group member 1, North-west, femaleThe following Working Group member from the North-west recognised that to reach community members at risk under any of the LifeSpan strategies, conversations are needed between people not at the frontline of suicide prevention, but across sectors and communities, with community members well placed to be “gatekeepers”.I had an email conversation with [allied health professional] in [coastal town] …she says, “I see suicidal people all the time because of their chronic pain and how it impacts on their life”. I’m like, “What do you do with them?” and she’s like, “I don’t know. I just, like, let them talk”. And I’m like, “Do you know there’s suicide [prevention/support] services who they can go and see for free?” And she’s like, “Oh, thank you” …so we’re not doing anything new but we’re just connecting. – Working Group member 1, North-west, femaleFor the delivery of some activity types under LifeSpan, i.e., training or education, reaching those at risk meant being able to understand the needs of the target group an apply appropriate communication styles. This was described as finding the “right” voice, someone relatable to the cohort, to connect with community members, by this Working Group member.… the recent activity with Doc Robinson, he’s not a professional speaker; he’s a dad, talking about his boy…they [the audience] trusted [him] despite the roughness of the delivery… on their own level… the vast majority of us going out and speaking is not going to reach the people that we talk about as being ‘unreachable’. – Working Group member 19, North-west, femaleOut of the nine LifeSpan strategies, Working Groups chose to build community capacity and awareness, i.e., through the “community engagement” strategy see Fig. . EffortsA lot of the activities have ended up being one step removed in most cases from the actual person at risk of suicide…it’s delivered to maybe a professional or someone else that might have contact with them. – Working Group member 14, Launceston, maleConsistently highlighted across participant groups, and as described by the perspectives of a Launceston site Working Group members and a Primary Health Network employee, some strategies were considered overly ambitious at the community-level, due to lack of capacity, influence, or resources.We’ve asked communities implementing the model to be able to have a significant influence in other areas, like emergency and follow-up care, treatment regimens and even improving safety and access to means…it would take a pretty strategic, well resourced, and capable leadership team to be able to do that…in a short time frame… – Primary Health Network 6, female…there’s a lot of things we’d love to do in [the] health sphere, and accident and emergency and you know, educate GPs and all that kind of stuff. Who in this room can do that? No one… – Working Group member 16, Launceston, femaleAs described by the following Primary Health Network employee, when developing activities under the Lifespan model, a community co-design process is needed, working with communities to utilise and build existing resources and relationships, and recognising local needs may require only some strategies to be implemented.Sometimes it’s not having all pieces of the pie covered…[It’s]codesigning with communities to do what communities do best in the context of what resources they have at hand. What relationships do they have? What are their priorities? Rather than sort of tasking them with delivering on the whole of that LifeSpan model. – Primary Health Network 6, femaleThe LifeSpan systems model was perceived as a helpful starting point, providing valuable direction for suicide prevention activity planning. Overall, the model was seen as reflecting the broader areas of people’s lives which impact on suicide.It enabled us to get some activities on the ground…it gave some direction. – Working Group member 1, North-west, female.It seems to encompass all parts of everybody’s lives… there’s room for help and improvement and support from every area of a person’s life, which is really what people need. – Working Group member 15, Launceston, femaleBarriers to implementing the full LifeSpan model centred on its perceived complexity, which was commonly discussed across participant groups. The following Working Group member described how the framework was perceived as a barrier to involvement of people with lived experience and people with low literacy in Working Groups.I’m coming from a grassroots level of community development. It was a huge barrier to include people with lived experience, people that have never worked in an office in looking at that model…it is extraordinarily difficult for people with low literacy. It’s dis-empowering and what you’re losing there is some really rough diamonds that have valuable input and linkages to those that are vulnerable. – Working Group member 4, Break O’Day, femaleAs highlighted by the following Working Group member and an External Stakeholder, despite being promoted as a whole of community response to suicide, the LifeSpan framework does not include a postvention strategy. Postvention was described as essential to reach those at risk after attempting suicide, as well as those bereaved by suicide, who are at higher risk themselves.There was a gap in the model…there’s no postvention part of that model that deals with people who have attempted suicide and the people left behind. – Working Group member 3, Launceston, maleIt’s based around the whole community, response to suicide prevention, based around the Black Dog Institute model in nine sectors…you left out postvention… it’s actually a very significant part of suicide prevention. – External Stakeholder 9, Tasmanian Suicide Prevention Community Network member, maleA member of the Tasmanian Suicide Prevention Trial Advisory Group noted that there was also lack of information on how to adapt the framework and accommodate for differences in gender, despite this being considered essential by Working Groups in understanding how to modify activities and overcome barriers to accessing at-risk groups, including men.Gender was, for me, the missing ingredient…that’s also historically part of why we haven’t really been able to make big inroads on the numbers, because we’ve not had a gendered focus…programs and services that have been used, or funded in the past, such as Lifeline, tend to reach women better than they do men… we know 75% of suicide is in men. – External Stakeholder 3, Tasmanian Suicide Prevention Trial Advisory Group member, maleA member of the national evaluation team recognised the role of the Primary Health Network as needing to take on aspects of community development when implementing the Trial.I suppose in terms of PHN’s [Primary Health Network] knowledge and capacity around working this community and essentially doing community development work which was a bit sort of out of the realms of normal PHN business for a lot PHNs – External Stakeholder 14, National Evaluation team, femaleParticipants explained how effectiveness was defined within the context of the Trial, and their communities, and how efforts could best be sustained in Tasmania post Trial. The following Primary Health Network employee and member of the Tasmanian Suicide Prevention Trial Advisory Group described success as being along a continuum, measuring outcomes other than suicide rates to reflect progress. The following highlights how relationships building, and increased awareness were considered as evidence of effectiveness of the Trial.Every relationship that’s built, every effort that’s made to engage a service is progress. I think use “progress” rather than “success”…understanding the extent to which you were able to achieve what you set out to do…it’s teaching us something we can apply next time. – Primary Health Network 6, femaleThe ultimate measure is the suicide rate [but]…there’s so much more you can measure. I mean just raising community awareness about how to talk safely and how to support people…getting a broader community to understand what the impacts of loneliness are…whole community awareness raising. – External Stakeholder 2, Tasmanian Suicide Prevention Trial Advisory Group member, femaleA Working Group member in Break O’Day perceived it as disconcerting that while measuring program effectiveness was a primary focus of the Trial, a reduction in suicide was not able to be measured within the life of the Trial in Tasmania. This was a commonly reported concern, particularly across Working Groups and external stakeholders.I think that was a little bit disconcerting was that– when this was initially introduced, it was with the idea of being able to evaluate the reduction in suicide. – Working Group member 12, Break O’Day, femaleIn Launceston, one Working Group member described how effectiveness was demonstrated through the partnerships established through the Trial, including inclusion of people with lived experience within the Working Group. Success was viewed as building the capacity of people representing the priority populations, also seen as a sustainability measure.Our lived experience group…a partnership that’s happened because of the trial … the trial may, or may not be there after June but they, the learnings that they have and the confidence that they have, would still be there. – Working Group member 2, Launceston, femaleAnother Working Group member in Launceston described how the systems-approach called for focus on specific strategies, however this respondent felt that flexibility was central to the success of a systems approach. There was a perception that there was still flexibility in the model to focus on areas the local Council felt comfortable in, for example community capacity building, within suicide prevention efforts.I didn’t like the sense that we were being pushed towards a particular part of the model…around the medical stuff within the hospital system… whereas if we were to work with our strengths as a council, we’d been working more towards the lived experience, towards more community capacity building. – Working Group member 3, Launceston, maleSeveral Working Group members across the Trial site described how decisions were often based on getting started, even just one-off activities not considering sustainability. Partnerships, continued funding, and people’s capacity to take ownership were regarded as important elements to sustaining project outcomes.A lot of those activities were just a one-off thing. But as we’ve gone on, we’ve built on some of those… It’s been partnerships, and we’re relying on each other to deliver both of our objectives. – Working Group member 2, Launceston, femaleIs it sustainable if someone takes ownership of it?… then try find an owner… – Working Group member 19, North-West, female.We’re up to our third event of working together and building those relationships with the Child and Family Centre, with us, with Mission, with the Church Group, with Rotary…that’s going to be somewhat sustainable going forward…that hinges on funding…it’s hard to do things when you’re penny-pinching. – Working Group member 1, North-West, femaleBuilding relationships with local services was considered a low-cost, high-impact practice for sustainability.There was probably a conscious idea to work with and embed local services to … upskill, capacity build…and be involved in sustainability aspects, that’s what they’re trying to do. – Working Group member 12, Break O’Day, femaleThey’re fairly simple strategies that don’t require a lot of money…build that level of sustainable relationships on the ground… – Primary Health Network 2, maleWorking Group members discussed how suicide prevention training and increased awareness led to changes to organisational culture and practices, including within population-group specific organisations, which could have a legacy post-Trial.…to educate men in different workplaces… maybe that is an element that then is changing the work culture in those workplaces. – Working Group member 1, North-west, femaleThey’re really starting to embed in their practice as a [workplace], a lot of this work…this is going to continue beyond the pilot, regardless. – Working Group member 7, Break O’Day, female“As discussed by a Working Group member in the North-west, there were advantages of drawing on the resources and expertise of local Councils, which was commonly recognised across the Working Groups.Councils run events all the time, it would be very easy for them to put something in those events…They have a lot of levers to pull. Councils know their communities and the different pockets within their communities. – Working Group member 1, North-west, femaleIt was evident from discussions with community members involved with the Trial that fatigue was a significant concern. Whether a trial or not, there was a need for program staff and communities involved to consider the lasting impacts of community fatigue when implementing a systems-based model.These communities have built up a level of expectation…trials not continued or converted into more meaningful change, actually supported by dollars- that’s three potential [trial site] areas that are going to feel let down, particularly the people that have really been engaged in the process… that’s always an issue for trials, there’s always risks from a design component, like there’s uncertainty about what’s going to go ahead, you’re at risk of losing people because of that… – External Stakeholder 2, Tasmanian Suicide Prevention Trial Advisory Group member, femalePost-Trial, there was a perception that government had responsibility for ensuring ongoing support for local communities, to continue suicide prevention efforts in their communities and build on Trial learnings.The notion of a trial does suggest ideally that you’re going to do something afterward…we shouldn’t be having a trial unless there’s a recognition or an acknowledgment that we’re going to then implement what has worked. Otherwise, it just let’s communities down. It breaks trust. – External Stakeholder 3, Tasmanian Suicide Prevention Trial Advisory Group member, maleAs highlighted across participants, strict adherence to the Lifespan model, which was perceived as a top-down approach decided on by the government, was not possible within the proposed time or available resources in the communities. The establishment of the Trial in Tasmania and Working Group governance structures and processes impacted on activity development, adherence to the Lifespan model, and ability to reach target populations. This highlights a need for communities to implement longer term programs with sufficient planning and implementation time, and the need for comprehensive assessment of resources available to implement activities under a systems-model. Working Groups preferred to develop activities using a bottom-up approach, based on the availability and interests of people who could undertake initiatives, the best use of available time and resources, and being able to meet some of the perceived needs within communities. Working Groups preferred not to deliver activities only to defined population groups, believing the wider community should not be excluded. Activities therefore tended to focus on whole-of-community engagement, improved coordination of existing services, awareness raising, and community capacity building, to increase the confidence of communities to take action themselves. Continuous community engagement and community inclusion in key decision making was key to implementing suicide prevention efforts across the Trial site. The involvement of host organisations enhanced local community links with the Trial, as they were seen to be ideally placed to implement community level strategies and draw upon existing mental health or suicide prevention programs and networks.It was recognised across participant groups that adaptable approaches to activity development and implementation were essential to ensuring that most strategies under the LifeSpan model were targeted. This was described as particularly important for those harder to implement strategies such as means restriction or influencing practices in primary health systems, where the influence, capacity and resources of Tasmania’s Primary Health Network were required to target these strategies. Continued Primary Health Network level involvement in the implementation of systems-based approaches will ensure a closer approximation of simultaneous implementation of all strategies in a model, as described as being critical for full impact , 7, 45.Working Groups found delivery of activities to the priority population groups of men and older aged people challenging under a LifeSpan systems framework, with little influence within particular sectors to access and communicate with people at risk, i.e., aged care, and some strategies having little relevance to the population group, i.e., schools. Taking training to where men feel comfortable or in familiar settings , helped reach and secure participation of males aged 40–64. Such strategies increased access to awareness training and education to overcome stigma and assisted with logistical and financial barriers with attending training and activities outside of work hours. The role of people delivering training to men needed consideration, supporting previous research which has found that engagement and feelings of connection with a service/support provider plays a significant part in whether men access services or supports .Across all activities delivered under the LifeSpan strategies, access to, or the means to use, digital communication, impacted on engagement of people aged 65 and over. These barriers have been previously explored, for example using digital communication and clinical treatment platforms and mobile apps , 47, howWorking Group action and decision-making was strongly influenced by supporting governance structures and by capacity, knowledge, and experiences of community members and people with lived experience. In turn, these community members utilised the Trial to communicate program preferences based on their insights and knowledge about the needs of their local communities. While a focus on effectiveness and sustainability of activities was seen as important, there was limited potential to ensure these were included for every activity planned. Throughout the Trial, regularly reflecting on what worked well, and not so well, and adapting and improving processes as needed, including through the use of a PAR approach with evaluators, enhanced program planning within Working Groups and the Primary Health Network. Engaging community in program evaluation and program decision making is also essential to incorporate community perceptions and attitudes towards suicide and health, which are fundamental for program implementation and success. Insight from community and program stakeholders is key to influencing and shaping services and policy , ensurinSeveral limitations of the current study should be considered when interpreting the findings. The number of participants varied across the three Trial site locations; however, data were combined to reflect the overall Tasmanian trial site experience. This may contribute to results being representative more of one site. Several processes varied across the Trial site regions, including how Working Groups were structured, their membership and levels of engagement of members, service organisation support, the processes used to recruit service organisations, and the level of community member representation and input into decisions. Caution should therefore be exercised when generalising findings across participant groups, or across the whole Tasmanian site. Due to a delay between commencement of the Trial and engagement of the evaluation team, and as funding for the evaluation ceased prior to the end of the Trial, stakeholders’ perceptions concerning the start and finish of the Trial could not be fully captured.Evaluations of suicide prevention programs in regional, rural, or remote areas are limited, particularly evaluations of programs using systems-based approaches, focusing on men and/or older aged individuals. This study contributes to the evidence showing systems-based approaches, the LifeSpan framework in particular, can be implemented in regional and rural areas, as long as several considerations are taken into account. There is a critical role for early community engagement, the inclusion of insight from people with lived experience, representatives from vulnerable population groups, peak bodies, and senior management of services on Working Groups. Implementation of systems-based approaches needs to consider potential barriers within a community, as identified by the community themselevs, which may impact being able to reach those at risk. There needs to be a focus on increasing the capacity of the whole of the surrounding community to recognise and support those at-risk. Sustainability of initiatives like the National Suicide Prevention Trial depends on continued community-ownership and involvement, timely access to resources and funding, and partnerships with local community, to understand local needs and support action at the community-level. Funding and implementation of longer-term programs and evaluations utilising systems-based models are needed in Australia, to measure the impacts of suicide prevention efforts on other priority populations, and on suicide related outcomes.Additional file 1: Supplementary file 1. Focus Group/Interview Topic Guide. Trial Site Working Group members, Coordinators, Host Organisation Managers and Primary Health Tasmania.Additional file 2: Table1. Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist.Additional file 3: Supplementary Table 2. Codebook from interview and focus group data showing themes and sub-themes.


Research on the nature of a “good death” has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models.We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies.Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: “Pain and Symptoms Controlled,” “Being Provided Basic Care,” and “A Place like Home.” Other themes were “Having Preferences Met,” “Receiving Respect as a Person,” “Care for Caregivers,” “Identity Being Preserved,” “Being Connected,” and “Satisfaction with Life and Spiritual Well-being.” “Care for Caregivers” showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes.The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model.The Graduate School and Faculty of Medicine Kyoto University (R1924–1).The online version contains supplementary material available at 10.1186/s12904-022-00982-9. Dementia is increasingly recognized as a terminal illness requiring a palliative care approach especially in its advanced stages –4. Underphysical, psychological, social, spiritual or existential experiences,” “the nature of health care” such as teamwork, and communication about treatment, “life closure and death preparation,” and “the circumstances of death”. A recent systematic review of cross-cultural components of a good death in 29 studies of patients with cancer and some other disease such as AIDS and cardiovascular disease identified some core elements related to control, such as “clear decision-making” and “preparation for death”  wanted to be treated in a certain way and not treated [as] things or treated an object. (UK)Cross-cultural difference: In Canada, this theme is important in the context of divergent populations such as LGBT. In Japan, receiving “all possible treatment” is perceived as respectful for some people; and doing “nothing” for a dying person as a lack of respect.Receiving respect as a person means being paid attention, being treated attentively, being treated the same as a person without dementia, being free from physical restraints, and being treated by trustworthy caregivers Table . PersonsFrom a clinical perspective, we have lots of complaints around end-of-life care from families. And they don’t say “Oh, my relative’s spiritual beliefs were not taken into account and they died.” You don’t even use that terminology. But what you hear, they say is… things like “[He] didn’t even look like my dad anymore” you know. That was important [and] wasn’t taken into account for him. (UK)Cross-cultural difference: In countries where home care is dominant, preserving identity does not take as much effort and is taken for granted because care is provided by families who know the person’s history.Loss of identity, for example, through changing personality, loss of abilities, roles, or companions, is a specific theme in dementia progression and involves spiritual and existential issues. Even if an individual’s sense of identity is threatened, maintaining the daily appearance and personal routines, understanding the person’s past, and being and appreciating the person they have been, can improve their end-of-life experience.Because they [persons with dementia] can feel compassion and they want the connectedness with others to make contact. (NL)Cross-cultural difference: In Japan, being connected means mainly family bonds and presence, while the presence of priests is rare. In the Netherlands, Ireland, Portugal, and Brazil, this was also perceived as a religious experience in people with religious beliefs.People with dementia tend to lose social relationships and social interactions, which leads to fear and isolation including at the end of life when people are not mobile. Retaining a sense of connectedness reduces fear and isolation. Sensory stimulation such as hearing, being touched, being in social contexts, experiencing nature and a sense of transcendence can help people with dementia feel connected with the environment and their inner self.People with dementia generally did not intend to be a burden for caregivers in a physical, psychological, economical, or other way. Not wanting to negatively impact on others can be a social but even so a spiritual or existential issue, which may prompt people with dementia to long for death; however, social, and other support systems can reduce the negative impact on caregivers.They [people with dementia] would like the preferences of care at the end-of-life to be acknowledged, they would give their family members total freedom to change whatever decisions they have made if the new decisions would decrease the family's suffering. (BZ)Cross-cultural difference: The theme name was discussed and revised multiple times. This theme generated different solutions cross-culturally. In Japan, entering a nursing home was seen as a solution to relieve caregiver burden. This theme could be a reason to request euthanasia in the Netherlands. In Brazil, people tended to offer considerable leeway in their wishes by prioritizing family life.Even when they are in very severe advanced dementia, sometimes, when they are connected with people who support their spirituality, sometimes, they can remember things. Sometimes, they can remember names. (PT)Cross-cultural difference: “Being Connected” with God contributes to “Satisfaction with Life and Spiritual Well-being” for religious people, while for non-religious people, “Being Connected” with family or “Identity Being Preserved” contributed to this theme.A person’s sense of self, acceptance, pleasure, and feelings of peace were deemed the components of ‘Satisfaction with Life and Spiritual Well-being.” The theme’s codes, such as “Acceptance of life closure” relate to “Satisfaction with life” and is usually part of spiritual themes. This theme was enhanced by relationships, in particular, a person’s “Sense of being protected” by God or others whom they relate to.We presented nine cross-culturally shared themes to help achieve a good end of life with dementia, integrating findings from qualitative studies in eight countries by focus group and individual interviews and de-briefing with researchers about their original data. The mapping of themes also delineated themes and issues that are relevant in some cultures, and showing the breadth of what can be important in a good end of life with dementia can help identifying what is important for individuals.A key finding is the benefit from and value of relationships over full autonomy, even in Western countries. Relationships were discussed as a reason or promoting factors in all nine themes for people with dementia at the end of life who partially or fully depend on others to address physical, psychosocial, and spiritual aspects. The thematic map indicates that maintaining a good relationship may promote other themes in a good end of life, acknowledging there are trade-off situations when a good end of life cannot be achieved in full, or for both the person with dementia and their caregivers. Previous conceptualizations of a good death have identified autonomy or independence as central; the ability to choose freely, independently of others’ control –44. The Another finding was a prominent theme in dementia as “Identity Being Preserved” cross-culturally, while most conceptualizations of a good death in cancer and other chronic illnesses emphasizes “Autonomy” or “Being in Control” , 48–52. The themes with initially most divergent codes were “Care for Caregivers” and “Satisfaction with Life and Spiritual Well-being.” “Care for Caregivers” was often discussed as avoiding caregiver burden. People with dementia may leave decision making to their family members to avoid burdening others. Since sometimes there is a trade-off between care for the caregiver and the person’s wishes , if the Participants were from diverse cultural and (non)religious backgrounds and countries. We used data from those living in institutional settings and those living at home. Diverse data enabled us to discover major commonalities and smaller differences in relevant themes of good end of life.While traditional designs of integrating qualitative studies use published papers only, the focus group discussions were useful to identify unwritten aspects about co-researchers’ studies, increase understanding of the relationships among themes and jointly interpret commonalities and differences. Continued email discussions with the co-researchers of original studies enabled repeated refinement of themes to ensure trustworthy labelling reflecting nuance in raw data, including through recalling observations in ethnographic fieldwork, from intimate knowledge of the co-researchers.We have drawn on the data of studies conducted before the COVID-19 pandemic. During the COVID-19 pandemic, public perceptions about a nursing home as a “Place like Home” may have changed to less favourable perceptions through social distancing and infection control measures. In the UK, where nursing homes are a common place of death for a person with dementia, more people with dementia died in private homes than before the pandemic . ThroughThis study has some limitations. Although we tried to use purposive sampling, most invited co-researchers were from European regions as the research field is not fully explored in diverse regions. We, therefore, invited Asian external experts in the peer-debriefing. For the same reason, our findings about relationships might not generalize to the USA, where control and autonomy are strongly valued. Also, much of the data was obtained from family caregivers, therefore, family perspectives even though from the viewpoint of a good end of life for their relative, may influence the results.For clinical practice, the thematic map suggests a framework of important elements of a good end of life for people with dementia. The framework acknowledges the importance of relationships as central to connecting the themes to support advance care planning . Advance care planning is recommended early for people with dementia because of the declining ability to express their preferences and wishes as the disease progresses . AlthougFurther research should examine how to use the framework in case of conflicting preferences regarding themes. It may not be feasible to optimize all themes to achieve a good end of life. For example, there may be a trade-off between “Care for Caregivers” and “Having Preferences Met.” It is important not to increase feelings of guilt by increasing pressure on caregivers to achieve difficult goals, particularly about maintaining care at home . Also, wThis study identified nine common themes of a good end of life for persons with dementia in diverse countries. Having good relationships appeared a key aspect of a good end of life. Our suggested relationships-valued framework may help to personalize care plans in end-of-life conversations.Additional file 1. Topic guide of focus groupsAdditional file 2. Peer-debriefing discussion about initial thematic map