Drawing from interviews with 31 young leading climate activists from 23 countries across the world this article aims to capture the contribution of the recent youth climate movement to communicating climate science and politics. We show that from the point of view of the youth activists, the movement powerfully connects personal and local experiences and emotions with climate science. This has enabled the activists to construct an authentic, generational and temporal identity that has helped them to carve out an autonomous position and voice with considerable moral authority among existing climate policy actors. Claiming to represent the future generation, we conclude that activists have offered an important added value to climate science as new ambassadors for scientific consensus and climate mitigation. The youth movement and the added value it brings communicating climate science is an example of the dynamics of the formation of “relational publics” and emphasizes the need to understand better the networked communication landscape where climate politics is debated. Voices of a generation.The communicative power of youth activism.But that is easily fixed – just start to listen to the rock-solid science instead. Because if everyone listened to the scientists and the facts that I constantly refer to, then no one would have to listen to me or any of the other hundreds of thousands of schoolchildren on strike for the climate across the world. by introducing (through selected earlier scholarship) three conceptual threads that have informed our analysis: 1) challenges of climate science communication, 2) the specific nature of the youth movement itself, and 3) the broader communication landscape . We will then present the empirical material and discuss our methodological approach in section 3. This is followed by the empirical analysis focusing on the three research questions . While these sections provide distinct findings and reflections on these specific themes, our main argument is a synthetic one: if we are to understand the specific value of the youth movement – and its lessons to climate science communication – it is crucial to see how the knowledge The IPCC 1.5 C report in October 2018 created a crucial factual backcloth for the demands of the youth movement and played a key role in bringing about a new rise in global media attention to climate change . Initiated after the Paris Agreement , it repeated the basic message of earlier IPCC reports and communicated that youth activists and their generation will inherit, along with between 8.4 billion and 11.3 billion others, a planet that will be 0.8–2.6 degrees warmer with sea levels 5–32 cm higher  movement contributed to this heightened attention and sense of political urgency. At the same time, the interplay between scientists, politicians and the media created favourable conditions for the movement to appear and spread.The youth movement did not emerge as a direct consequence of the 1.5 °C framing. However, the IPCC, by emphasizing the need for “unprecedented” and “systemic” changes, provided key ingredients for it. During 2018 and 2019, scientific messaging, energized activism, and dramatic extreme weather events intersected in powerful ways. At this conjuncture, the overall discourse showed signs of change. Several actors, such as the European Parliament and some leading mainstream news organizations began to replace the word ‘change’ in ‘climate change’ with ‘crisis’ or ‘emergency’. The global context (developing different messaging for different audiences), lay expertise (highlighting interaction between scientists and lay people) and public participation (democratizing science through more engaging communication).This interplay underscores the complexity of the contemporary science communication, which is still often based on the idea of an information ‘deficit’ implying a one-way flow of information. Aiming at better ‘science literacy’ among lay people, this model assumes an ideal of wisdom flowing from scientists to their audiences. In contrast, science communication scholars have long stressed the need for alternative models. For instance, Secko, Amend and Friday  have pointed to the role of probable futures with a complex risk-uncertainty vocabulary. This dilemma has, of course, seen some scientists stretch the ‘policy-relevant’ statements to saying that ‘substantial and sustained reductions in greenhouse gas emissions’ are required , thus offering a chance for politicians and activists to translate scientific evidence more easily into calls for climate action.Dialogic models, such as lay expertise and participatory science, however, do not offer simple solutions, particularly when we are faced with complex issues such as modelling of climate futures. The role of IPCC scientists in delivering descriptive and policy-relevant, but not policy prescriptive, knowledge, , after all, begs for a considerable amount of authority, as it deals with communicating specific added value and contribution of the youth movement in communicating the climate information. This leads our attention to earlier research on climate activism.Seeing science communication as a cooperative and networked effort may help scientists to retain their strengths while allowing other actors to re-formulate climate knowledge to a wider range of communicative genres and gain better resonance with different contexts and people Boykoff, . Modelliemotional aspect of young climate activists and their expressed combination of fear, despair, and hope. A telling moment of this was Thunberg’s speech to the UN in the fall of 2019, stating: “I want you to panic.” . Building on a long research track on youth and climate, Ojala, in turn, has shown how young people use “meaning-focused strategies” to evoke hope and cope with threats . She has also highlighted the way in which such coping was linked to trust in other societal actors, the role of parents and the way they help youngsters to cultivate constructive reactions to negative emotions related to social problems . While these findings partly resonate with our own, our respondents clearly emphasized peer-support in this emotional work and motivation for action , disruptive  and dangerous  dissent, arguing that these models of activism – and their creative combinations – will be needed for youth climate activism to have an impact. Other scholars also highlight how the radical potential of the movement might be overshadowed by the unifying perspective . One distinct aspect of the current youth activists is their way of expressing themselves more consciously as inheritors of the planet. A parallel personal-generational argument is also articulated by grandparent action networks . Furthermore, even if some of the local initiatives originate from existing organizations, the FFF and related actions have mostly built their own structures. The youth actions starting in 2018, in the organizational sense, may bear more similarities to separate ad-hoc initiatives, such as for example ‘Black Lives Matter’ .First, the youth movement emphasizes a particular potential of the contemporary communication infrastructure. The recent youth climate movement highlights an emotional, personal commitment and rhetoric, which has brought together activists from very different and diverse contexts. This echoes Bennett and Segerberg’s  notion oSecond, the rise of the FFF-movement has intersected with a tide of global, populist and often authoritarian, nationalistic political “backlash” , which has sharpened political polarization. As many observers have pointed out, this wave of populism  interviewees are older.personal inspirations to join the climate movement,background and their motivation for action,role and tasks in the local movement,thoughts on what aspect of climate change were crucial locally,experiences and practices of local organizing relationship to climate science and scientists,relationship to established environmental NGO’s,relationship to media and professional journalists,their relationship to other political and social stakeholder The young activists were between 12 and 30 years of age. Although we initially defined The interviews were conducted in several native languages, and our synthesis here relies on reporting, paraphrasing and translations of key quotations by members of the research network.think with a community of interested participants who helped us to look at youth climate action through the eyes of individuals involved in the movement.As this description suggests, the material is characterized by multi-dimensional diversity that stems from different roles of respondents, from varying contexts and cultures, different interviewers, and languages. While we strongly trust the validity and quality of the research network, we have approached the material cautiously and stress that the interpretations and conclusions—and the responsibility for them—are our own. In section 2, we introduced three interpretative frames that have guided our thematic, theoretically informed close reading of the material. Having done so, we want to acknowledge that we, of course, owe our voice to our colleagues (see Annex 1) and the respondents. Without their local knowledge and commitment, we would not have anything to say. In the end, findings and reflections come from an effort to The overwhelming starting point of our respondents was that science—and, by implication, the IPCC—should be taken seriously. Not surprisingly, almost all the youth activists took on the role of speaking in the name of science. Most interviewees considered Greta Thunberg and her steady dedication to climate science as a model of inspiration.One interviewee from South Africa shared the same urgency as her Swedish colleague: “Because the way we’re going according to the IPCC and other credible sources, we are really starting to get to a point where if we don’t do anything quickly, we’re not going to be able to stop anything.”’ . A French activist said that he follows Valérie Masson-Delmotte,we are those in favour of science while they [opponents] are against science and development.” . A Swedish activist had read parts of the full IPCC reports, concluding that, “when one reads them, one understands exactly how serious it is. I cannot understand how people can know of these facts and are (still) not willing to do anything” . In turn, a Ugandan activist launched a critique, not of other people, but of global leaders for their “inability to take the necessary action”, explaining that, “scientists have provided the technical information” . These activists’ trust in climate science was especially motivated by calls for action, since activism is a larger part of their social fabric. Thus, they provide a bridge from the climate scientists’ “policy relevant, but not policy prescriptive” status (IPCC mandate) to activities seeking concrete political remedies and changes.Several respondents said they had read IPCC documents, such as the abbreviated summaries for policymakers (SPMs), while others had become aware of IPCC’s conclusions through social media and recommended scientific articles. Quite a few of the activists had been raised with this kind of scientific trust by environmentally conscious parents, among them well-to-do academics. This underlines the role of socialization in the cultivation of “meaning-focused coping” towards climate threats  as motivating pro-environmental attitudes. However, it also points at the possibility of climate activism as an élite phenomenon that builds on generationally accumulated social and cultural capital. An Italian activist complained: “Scientific ignorance is widespread [here], much more than in other countries”. She felt that media “do not understand how Trusting in science does not mean that activists would not recognize the complexity of the climate science knowledge. A Danish activist expressed some scepticism towards “all these predictions of what will happen. Because with the climate crisis we [only] know how little we know” . Nevertheless, while he demonstrated an awareness of the uncertainty aspects of climate science, he also declared that “you don’t really need all these statistics to explain the climate crisis. Because it is evident: […] we can’t continue doing things that harm the earth. And we know that.” (Ibid.) This points to a tacit understanding of how handling scientific certainty or consensus and public or political reasoning must, to a degree, follow different logics. It also shows that activists can—consciously and strategically—choose to take some distance from scientists. Communicating uncertainty is a particular challenge for climate scientists, who have seen uncertainties exaggerated in the media as indicators of “controversial science” Painter, .A French activist blamed the media for giving too much space to “climate sceptics” and too little to scientists. He also criticized schools for the ignorance of his classmates, “who, for example, do not know what the IPCC is” . A Slovenian activist, on the other hand, said that he had studied “a lot of environmental topics” at his primary school, also working practically to save the environment . Acquiring knowledge through practice, and thus understanding the climate situation better, has been confirmed by a Norwegian study showing that the respondents who were engaged practically in climate or environment activities also trusted climate science significantly more than other respondents . The importance of local institutions, with their trust capital and ability to use local languages in disseminating climate science to broader segments of society is crucial. At the same time, however, this reveals important global inequalities: where local scientific and institutional structures are weaker, and where there are, for instance, no prominent local climate scientists or IPCC authors, translating and contextualizing global knowledge to local conditions is still a major obstacle . Here is an example of how young people educate themselves with a purpose. Some interviewees, already in their 20s, had also undertaken the role of passed on by young volunteer teachers, experienced activists (who have interacted with scientists or are self-learned) to younger ones.The Indonesian activist had “educated the students ... not like a scientist; rather sharing or introducing these issues, because not all children—maybe in Indonesia, especially in Sumatra—have heard of the issue of climate change.” . He had successfully combined lessons on climate change with the critical extinction of species, which his young students could observe around them. Likewise, the Pakistani activist conducted Climate Education camps, which became “the best experience so far in my activism”. He had gone to northern Pakistan, an area very prone to climate change, “and I was happy to see children full of zeal to learn about this issue” . The Kenyan activist worked with other youths at universities and “we interact with school […] kids in terms of trying to nurture the culture of maintaining the environment from an early age” . Thus, the science is It is a paradox that while climate change “disproportionately affects those in the most disadvantaged groups”, the “climate engagement tends to increase with education and income” Happer, . For manAftenposten, Norway’s largest subscription newspaper .Some respondents testified about interaction between scientists and the movement. One of the Norwegian activists said that academic institutions had unofficially sent their scientists to speak at activists’ rallies, and that scientists and authors had added their signatures to a protest published in A Canadian activist found herself at a European conference: “We had IPCC scientists, over 150 media present […] IPCC scientists, one of them, like broke down in tears and hugged me, saying: ‘you’re the reason I still wake up in the morning.’” Such a reaction from a renowned scientist points to the different roles played by the scientists and youth activists and shows how both can emotionally find a way to move together. The interplay between the experiences of citizens and scientists offers impressive openings for further learning, however. The same Canadian leader also told of other experiences of connecting with scientists: “I think you can call [a] sort of hotline of scientists, you know, like what’s this fact, and they help you” . This special ‘reach-out’ from scientists to citizens may prove an interesting path for future communication.is to ought to” .Even if most climate scientists do not subscribe to activism, there are those who do .The thing that made me feel most connected to the issue was when people talk about their The importance on informants’ knowledge of how the climate crisis has played out locally was demonstrated, for instance, by an Indian activist. He was engaged in the case of wetlands in Tamil Nadu that “retain water when there are floods; they are not wastelands, but they are endangered. […] The 2015 Chennai flood damage could have been minimized if these wetlands were well preserved” . The activist thus linked environmental degradation to risks represented by global warming. A German activist had observed “more wildfires […] more droughts, less profitable harvests in the agricultural sector” and mentioned how the heatwaves were affecting the elderly . In France, an informant pointed out increased levels of droughts, floods, water scarcity and rising sea levels. The Danish activist said that Denmark was “less vulnerable than many other countries” but still reminded that farming could be affected in the future. The Kenyan activist mentioned major droughts, which used to occur in a five-year cycle, now with two-year intervals, “and [their] severity has increased”. Furthermore, “drought destroys the biodiversity, “inakausha miti yote” , so whenever it rains, water flows and washes everything. It leaves the community vulnerable to floods.” .Our respondents’ personal experiences provide a powerful way of narrowing the gap between passive and active citizenship, global and local knowledge as well as anxiety and activism. This was well stated by an Australian activist. For her, everyday experience came first, followed by science and verification:The activist in Bangladesh referred to a cyclone that devastated large areas of his country when he was seven years old: “The [coastal] area where I live is often hit by storm and cyclones.” Furthermore, his field experience inspired his activism, he said . The Brazilian activist was preoccupied with fighting a megaproject in an area inhabited by indigenous people, thus demonstrating experiences of especially vulnerable people .Activists from the Global South spoke more about extreme events that those from the Global North. They were also more often inspired into action by events and problems in their own countries, consciously or more spontaneously connecting these to the climate science and reports. Connecting the dots, though, may entail more than seeing local extreme events as indicators of climate change. Their answers also spoke of a willingness to engage holistically and globally with the climate crisis and the environment by referring to matters such as species extinction and signs of environment degradation that are not necessarily linked directly to climate change.Further evidence of the importance of personal experiences were provided by the affective vocabulary employed by many activists. We often heard of an intense interplay of anxiety, stress and even depression, perhaps caused by news consumption and climate crisis predictions. On the other hand, we found expressions of collective and personal enthusiasm provided by the action being taken and the emotive influence of the school strikes. Thus, emotional anxiety often provided them with the impetus to act:” It was like […] sitting on that fear, and anger is not going to do anything” . It was also referred to as a source of authority within the movements: “The strongest voices [in the movement] have a massive emotional attachment to this [activism]” . Emotional dynamics also was seen to tie the activists together:” We support each other and feed each other’s anxiety” .In the experience of the activists, personal anxiety was also juxtaposed with the thrill of public attention. One intervieweespoke of the sense of seeing “hundreds of thousands of young people, who had different national backgrounds, races, religions, colours” , “crying as we did the climate scream” , remembering “our first organisation […] it was very small compared to the other strike, but it was so beautiful” , or “leading chants and hearing […] the voices of up to 20,000 people’s strong reply. “.sense of authenticity in their messages.It is impossible to understand the success of the movement without acknowledging this immediate sense of enpowerment and the feeling among activists that they can do something about their anxiety towards the future. It speaks to the importance of self-reliance and The literature on the political motivation for ubiquitous, digital communication networks of social movements is vast , and a key characteristic of the movement was “lack of leadership” . In other words, this meant that “it is necessary to create an original [national] Japanese plan”  or that “these things would take place even without international movements, without linking with them, attending the joint events etc.” . Of course, the respondents’ emphasis on local initiatives and judgements can partly be a defensive reaction against criticism, as the strikers have been blamed for being driven by fashionable media attention or co-opted by the global movement. Nevertheless, this is also evidence of a de-centralized, “connective” identity towards the global movement: “an organizational principle that is different from notions of collective action based on core assumptions about the role of resources, networks and collective identity” . They emphasized the egalitarian, mutual exchange of benefits: older activists would offer their experience and younger ones would provide “input about what young people today think” . There were also references to conflicts,” because some members [of FFF] want to do it only with the students themselves” . There were even some moments of outright opposition, as from a French respondent: “Greenpeace is 50 years old and there has been no radical change over this time period. Maybe it’s time to adopt a different strategy and to ask for a global and systemic change and not just for incremental measures” .As one would expect, many global ENGO’s: Greenpeace and just kids treatment may be interpreted as a feature of “youngism” . On the other hand, the activists remain suspicious of this tide of appreciation. Some were annoyed that political parties sometimes joined in on the strikes, prompting a Danish activist to accuse them of an “attempt to hijack our movement”  and a Finnish activist described as despicable “politicians [who]…show up for a photo op at strike events, fetching a selfie saying, ‘here we are’; all the while, their deeds are completely incompatible with [our position].” . Our German respondent said: “Mrs. Merkel herself actually praises what we do but is politically far away from implementing our demands. That is a kind of schizophrenia within these opportunistic forces in the end.” .Keeping at a distance also from the more climate-action-friendly political leaders has grown organically from the core logic of the movement. The initial idea of demonstrations at parliaments and not going to school was, after all, directed at the political establishment. On the other hand, the activists also drew attention from the more climate-action-sceptic political camp. Not surprisingly, many youth activists depicted a political landscape whereby right-wing parties, conservatives and populist political players have offered the harshest critiques of their movements. Our Finnish respondent put this ironically, saying some politicians give the impression “that this is some kind of leftist-green conspiracy, and that the stupid kids they should just go back to school as they understand nothing” . In Norway, “FPU [a right-wing youth party] and the Norwegian oil and gas [lobby] have almost had campaigns against the school strikes.” .From these remarks, a synthetic interpretation of how the activists situated themselves into the broader field on climate communication suggests itself. We can see how the social media age and a “connective”, personal attachment logic builds a link between lived experience and public participation and how personal experience and even existential anxiety become cultural, communicative capital that produces and protects a sense of autonomy. This distinct role and the ability to “self-mediate”  this identity, in turn, serves as a terrain from which the movement can negotiate its relationship to the other actors that shape its opportunities. The activists have carved out a new, alternative position in the field of politics, distancing themselves both from right-wing populists and the more “climate-policy friendly” politicians.Many obstacles to effective climate communication are rooted to the nature and reality of the phenomenon itself as an exceptionally—perhaps uniquely—thorny and complex global problem  the activists’ relationship (and reliance) to climate science (RQ1), 2) the local and personal experiences on which the movement is rooted  (RQ2), and 3) the opportunities and affordances of the contemporary technical and political communication landscape (RQ3). Each of these elements offers, we think, important insights to climate communication.science communication (RQ1), is deceivingly simple: the way the movement actors have positioned themselves as unapologetic ambassadors of the key message of science and its call for urgent climate action. This highlights the value of consensus as a practical public good, as a rationally valid, temporally shared understanding and, as a starting point that we should allow to frame the debate about political choices and actions. Stressing the practical and political common-sense conclusions and consensus the movement actors have helped to translate scientific knowledge into the realm of public debate. By doing so, they have helped to negotiate the distinction between scientific production of knowledge (and consensus), built on organized uncertainty and doubt, and policy debates that aim towards temporary agreement for action. For our understanding of how better climate science communication works this underlines the importance of actively participatory, and co-productive climate communication where scientific fact and scenarios are translated into meaningful (and powerful) messaging. Of course, this role is not unique and new as such. This is what environmental NGO’s, and climate conscious politicians and their networks have also been involved in for decades. This is what many active scientists have tried to do for a long time (and our respondents reported examples of how the movement inspired some scientists to actively endorse the activists). Thus, to capture more clearly the specific contribution of the youth movement, it is important to look at the nature and identity of the movement itself.A key lesson to climate strong rootedness to concrete, lived experience of the activists (RQ2). In the interviews, this took several forms. For several respondents, this came through, at the level information and knowledge, in their ability to recognize connections between the main IPCC conclusions and their own local observations that gave global climate science a tangible meaning. More importantly for our argument here, many of them interviewed activists described a strong affective dimension in their engagement, showing how activism was often anchored into almost existential, personal, lived experiences of anxiety – and hope. We can argue that the youth movement has played a key role in carving out a space for more public recognition of the fears that dire future predictions must cause also in wider parts of the population. Again, it not alone in articulating climate anxiety, but it has offered a model of translating it to public action. Facing growing uncertainties at a personal level and sharing these publicly will be an important part of public discussion and the ways in which scientific predictions and scenarios of both hope and despair are handled. This psychological aspect of climate debate, on could argue, grows in importance as we begin to realize that we are in some sense “too late”? , they have provided a new kind of representation of the future based on climate science and the urgency of climate action. Although questions of local experience, personal anxieties and generational justice point to different directions, they can all be seen as resources for the movement to carve out a claim for an autonomous, distinct terrain from which an authentic and distinct voice could speak with enough authority that it could not be ignored. This voice – previously often ignored  – and its communicative power is what made and makes the movement also an effective part of communicating climate science and translating it into lessons that bare on meaning structured of everyday life. By assuming the position of living representatives of the future that has been predicted by climate scientists the movement claimed the right and justification to rely on scientific consensus in a way that has been more difficult for other social actors, including the scientists themselves.A key feature of the movement (from the perspective of the actors) is its ? Moser, . Finallyshaped and enabled by its context (RQ3). The interviews show how the ingredients of autonomy  seemed to work together. But this was crucially made possible by the contemporary communication infrastructure that supporter “self-mediation”  of the movement . The mix local, personal, generational, emotional and its linkage to hard scientific evidence and consensus is inspiring example of “connective action” in action . Understanding the movement through the lens a “relational public” , however, also demands that we pay attention to the careful negotiation of alliances and tensions with already existing institutions. This includes recognizing the energizing power of the aggressive dismissal and critique as well as the more supportive reactions of actors that favour climate action, including parts of mainstream media, environmental NGOs, and transnational governance organizations. If we look at the “inherited” landscape of climate politics, perhaps the most important and interesting contribution of the movement does not lie in their confrontations with misogynist populist or networks of climate denial and delay. Rather, the more distinctive and useful element of the movement has been the critique of the capacity of the whole political system  to face the message of climate science and translate that to action.Finally, the youth climate movement and its influence has also been ethos of a generation. By connecting youth activists in a loose global network, the movement seems to have at least partly negotiated the pitfalls on being reduced to the global geopolitics of climate change. Science, it seems, played a particular role among these alliances. In a crucial way, the movement supported the communication of the IPCC 1.5 °C report and the global peak of attention that it achieved. In this sense, the movement played a crucial part in science communication of the IPCC—a role that the IPCC perhaps itself could not have played, however skilful or creative it could be in its messaging.The youth climate movement articulated an


Hope performs an important role in how patients and their families cope with suffering and stressful events. To better inform practice and theory on hope, palliative care research should include both patients and their family carers, given their strong interdependence. The aim of this study was to explore how hope is experienced in dyads formed by end-of-life patients and their family carers. In this qualitative study, data were collected by in-depth interviews with seven Portuguese family dyads. Analysis followed a thematic analysis approach. The analysis of the interviews shed light on the importance of hope for all participants, and the challenges involved. Family dyads noted several barriers and facilitators to perceptions of hope. Barriers to hope included limitations imposed by illness, feelings of anguish and helplessness, and poor communication with clinicians. Hope facilitators included supportive others, positive thinking and sense of humour, connection with nature, faith in religion and science, and a sense of compassion with others and altruism. Given the multidimensional scope of hope, the main challenge for family dyads is to look beyond the disease itself. Thus, palliative care teams should be encouraged to support and foster realistic hope, helping families prepare for death, in the context of advanced cancer. In palliative care, the way patients balance feelings of hope and hopelessness can play a significant role in how they perceive their quality of life and quality of dying ,2,3. HopPrevious studies suggest that sustaining hope can have a positive impact on patient outcomes, such as quality of life ,7,8,9. IHope plays a key role in providing comfort and quality of life for patients and families  and was Researchers admit that unrealistic hope—such as hope for a miracle, divine intervention, or a new miraculous treatment—has a unique status for patients in EOL care, who can harbour unrealistic forms of hope ,24. DespThis study focused primarily on exploring how hope is experienced by dyads of EOL patients and their family carers, and identifying factors that constrain or facilitate a dyad’s shared perception of hope and how it is provided and received. This empirical information is critical for recommendations on how to develop hope-based interventions for family dyads.An exploratory qualitative study was performed using thematic analysis within a critical realist paradigm. Critical realism views reality as complex and recognises that understanding this complexity must go beyond describing surface-level empirical observations. In fact, deeper levels of understanding and knowledge, gained through adapting methods of exploration, confer critical realism’s usefulness and philosophical fortitude ,27. ThisThe study is reported following the recommendation of the Consolidated Criteria for Reporting Qualitative Research (COREQ) .Participants were recruited in the palliative and/or hospice care unit of a Portuguese hospital, between March and May 2021. Purposive sampling was used to select participants among all known patients, and their family caregivers . The inclusion criteria of participants were as follows: (1) adult individuals (aged ≥ 18 years); (2) adequate Portuguese language skills; (3) cognitive ability to participate in the study. Patients chose an informal family caregiver (FC) to participate in the interviews. All patients were in the EOL stage of an advanced oncological illness .Individuals were included regardless of gender, age, marital situation, cultural background, and primary diagnosis. This option is aligned with critical realism and the existence of different layers of reality ,28. EligA semi-structured interview was developed by our team, using open-ended questions aimed to explore patient and FC views and experiences of hope. The interviews were guided by a topic list informed by clinical experience and the literature ,30,31,32The interview guide included both broad and probing questions. Interviews started with an open question about hope in palliative care. The interviewer did not define hope nor related themes prior to the interview, to best explore the participant’s experiences and definitions. The next questions sought to identify the interviewee’s perceptions of hope in EOL care, including perceived barriers and facilitators related to hope, care management, and the relationship between physicians, staff, and family members. Participants were asked to describe whether they experienced hope, and if so, to elaborate on the content, value, and meaning of hope, and how it has changed during the illness process. Participants not reporting hope were invited to elucidate their experience. Though the guide was not pilot tested, questions were rephrased during the interviews to improve clarity and understanding.All interviews were conducted by a nurse involved in care for EOL patients (SR). However, the nurse wore regular clothes during interviews (not a uniform), signalling that the interview was not part of, and would not affect, their therapeutic trajectory. In addition, the nurse was not directly involved in the daily care of the dyads interviewed. Face-to-face interviews were conducted simultaneously with the patient and their FCs. There were no repeat interviews. Each interview lasted between 30 and 40 min and was digitally audio-recorded for verbatim transcription by the first author shortly afterwards. The interviews took place in a private location at the local palliative unit. Notes were taken during and after the interviews. The interviews were conducted in participant’s native language. The first author translated the textual extracts presented in this article into English.The analytic technique used in this research was thematic analysis ,36. WebQThe six team members included nurses and clinicians working in palliative care  and experts and researchers in qualitative health research with a nursing and palliative care background . In addition, the research team adopted a critical realism position, based on acknowledging human frailty and paying attention to how individual backgrounds and history can influence experience .Prior to each interview, informed consent, including consent for audio recording, was obtained in written form. Patients were allowed ask questions about the study, and could request the presence of family members. Participants were interviewed during the first encounter or, if they preferred, at a later scheduled date. They were advised that they could withdraw from the study at any time. No compensation was offered in return for their voluntary participation.The study was reviewed and conducted in accordance with the principles expressed in the Declaration of Helsinki, and the protocol was approved by the Ethics Committee of Leiria Hospital Center . Records for analysis did not include names or any other identifying characteristics of the participants. On completion of the study, all audio files, fieldnotes, and transcripts were transferred to a password protected, secure drive, behind a firewall. Only the first author had access to the transcribed material.In total, 7 patients  were interviewed, together with their FCs (7 spouses), they were all heterosexual couples. All participants were Catholics and had a European cultural background. The mean ages of the patients and their FCs was 49.9 ± 10.6 years (range 33–66) and 47.4 ± 11.8 years (range 37–65), respectively. All patients were diagnosed with advanced progressive cancer disease (stage 4); 4 of them suffered from metastatic gastrointestinal cancer. The patient from dyad 1 died 3 weeks after data collection. Total Edmonton Symptom Assessment Scale (ESAS) scores were low . The most prevalent symptom was fatigue . got a lot out of [the research interview]” (D7). Two dyads specifically expressed their gratitude for being able to talk about the topic of hope together and share their own experiences with the nurse.Analysis of the interviews shed light on the importance of hope for all participants, and the challenges involved. Family dyads noted several barriers and facilitators to understanding perceptions of hope, and two main themes and eight subthemes were identified. Common elements were sought across the narratives, case by case. Importantly, none of the dyads expressed any regret over participating, nor any concerns about their experience. Rather, many commented that they “We present findings in the form of interview extracts, interspersed with our own reflections and analysis.a cure is not possible or is almost impossible. Still, we cannot help but believe, this is to have hope”.All dyads identified hope in their current plan of care, although the strength and rank of this hope in relation to other hopes did vary. Throughout the interviews, other smaller hopes were quietly raised, such further treatment if necessary. D3 shared that “Family dyads indicated that good pain and symptom control, fundamental aspects of palliative care, often promoted hope. Almost all participants used metaphors of combat or struggle to describe their understanding of hope and their expectations regarding hope as an outcome. Many regarded their positive expectations about therapeutic benefits, even when prognosis was grim, as indications of their unabated force, signs they would not quit or “lose hope”, and would always continue to fight.being around to help raise the children” , “getting through the day with few symptoms” (D4), “maintaining autonomy” (D1), and “keep working” (D5). Setting short-term goals helped family dyads learning to live “one day at a time”. There was an emphasis on quality of life, rather than its extension. Family members spoke eloquently about their desire to return to simple day-to-day activities that were previously taken for granted.Hope was recognized through personal short-term achievements, which gave purpose in life and a positive sense of self. These smaller goals ranged between “Being optimistic gives us hope to continue. (…) On the other hand, positive thoughts are necessary for us to deal with everything that is happening to us!”; (D5) “There is no point in getting discouraged because things have to move forward (…) things have to move forward”; (D6) “We cannot be discouraged because tomorrow things will be better”.The family dyads described hope as lively, active, and, above all, a personal choice. The strength of hope was related with positive expectations about the future. Hope was associated with optimistic thinking and a focus on good things to come, but was seen as more than a feel-good emotion. Most of the participants explicitly uttered the words “hope” or “optimism” in their responses. Participants using an optimistic explanatory style interpreted events as external, unstable, and specific. Representative comments about hope and optimism included the following: (D2) “Do not lose faith, have faith and believe that the less good days will be rewarded”; (D6) “Believing, believing above all, having faith and believing. Each one goes to seek strength where he wants, one to God and another to the Universe”.From the family perspective, hope was the desired possibility, but requires an effort to maintain. At this stage, they perceived a link between faith and hope, a faith present in their daily experience, which made them believe in something positive, based on a transcendent belief. The sense of hope in close connection with the transcendent or the divine was highlighted in the excerpts of some couples: (D4) “Hope barriers included the limitations imposed by illness, feelings of anguish and helplessness, and poor communication with clinicians.(a)Limitations imposed by illnesshope could not be taken away and that it would always be there” (D4), and that “despite sometimes it is hard to find her [hope]” (D1). D5 asserted that “in spite of the physical discomforts, it’s not worth getting discouraged because things have to move forward”.Both patients and carers reported that cancer took over their lives. Participants expressed uncontrolled symptoms, such as pain, constipation, loss of appetite, and weight loss, which jeopardized their hope. While patients experienced cancer symptoms on a daily basis and learned how to accept and adapt to symptoms, carers were frequently distressed by watching patients trying to control their symptoms. Even though some intrusive symptoms reduced their hope, dyads described how “(b)Feelings of anguish and vulnerabilitySometimes I feel anguish and sadness, but I don’t want to think too much…”. D4 added that “revolt arises in some situations, in an attempt to understand the whys!”.Anguish and vulnerability may lead to feelings of anxiety and fear of death at the EOL, with negative impacts on patient mental health, as they feel a lack of mental and physical control over their lives. D1 shared that, “(c)Poor communication with cliniciansThe doctor who followed me was a bit negative. A lady of some age. Maybe I have no patience anymore. All that remained was to say ‘look, go order the coffin’, there is nothing to be done”. Poor communication leads to misunderstandings and can easily damage an often fragile relationship between a patient and health professionals.When clinicians respond to talk of hope from patients by reverting to scientific data about prognosis or survival, patients experience that as a withdrawal of support. D2 believed that a sense of hope could be maintained if the prognosis is coherently communicated: “Hope facilitators included supportive others, positive thinking and a sense of humour, a connection with nature, faith in religion and science, and a sense of compassion with others and altruism. These are reported more specifically below.(a)Supportive othersMy children are my pillars. If it weren’t for them, I don’t know if I would still be here” (D1). In addition, D7 stated, “the whole family is important, especially my brother and younger sister who have always been there”.Family, friends, and professional carers fostered hope by making patients feel they were well cared for and supported. Although lack of support was perceived as a barrier to hope, the presence of support from family and friends was frequently cited as helping dyads in their self-management practices and making patients feel valued. Families were also considered part of the participants’ legacy. Family and social support appeared to be a motivator that enabled participants to overcome their ambivalence about seeking palliative care. One dyad said that “my little angels can get me back on track” and provide “positive reinforcement” (D1). Another dyad mentioned that “whatever happens, it is in palliative care that we feel supported (…) a person asks and the way they respond gives us security in what they are saying” (D6). The positive conversations with healthcare providers gave them hope and helped them maintain faith in the treatment process. Hope was fostered by exploring realistic goals with patients, encouraging them to focus on day-to-day living rather than dying, and planning for special times with family.The palliative care team were also viewed as strong sources of support. One dyad said, “(b)Positive thinking and sense of humouryou have to be in a good mood, sometimes life brings more complicated things, and we have to think positively.” Some patients also comforted their FCs. Preserving a good spirit and humour was essential to them. Some of our participants focused on the optimistic sides of life and everything they could be grateful for. Therefore, through open communication, different elements of hope could be identified in their personality, in order to understand their positive perspective.Hope was valued as important in regulating negative emotions. Patients suggested that their FCs helped as much as possible, despite the cureless nature and EOL stage of their illness. D2 shared that “(c)Connection with naturegardening is good because the earth releases energy and that energizes us”. This notion was echoed in the D7 interview who highlighted the pleasant outdoor space of their home. Some symbols of hope focused on natural elements, such as sounds, smells, and colours. These were highlighted by D7 because “they reduce pain perception, increase satisfaction, and improve the sense of peace”.Nature was viewed as a spiritual healer that enables people to reflect on life, making it a valuable element in fulfilling existential needs. D2 mentioned that “(d)Trust in religion and medicinetrusted God to care for them and take away their suffering”. Spirituality is a crucial dimension of people’s lives, especially those in the final stages of life. Its importance is recognized as a need of the sick person and family and is considered inherent to palliative care. For D2, “there is someone who is looking out for us and who gives us support when we need it and who gives us a hand that… There is nothing to fear…”. D4 stressed that “prayer was an enormous help” to them in generating hope.Most participants related their positive expectations to some sort of faith, with a religious belief or a faith in medicine. Hope was considered a divine gift, in the case of D7, who “hope does not die if there is faith in medicine (…) God can work miracles through medicine”.Other expressions of faith focused on individual doctors, the medical profession, or science: D3 expressed that “(e)Sense of compassion with others and altruismsometimes the greatest strength we can receive comes through helping others. Hope is always there for us to draw upon, and it’s easiest to see that when we decide to share it freely with others”.A life of meaning and purpose focuses less on satisfying oneself and more on others. It is a life rich in compassion, altruism, and greater meaning. Patients frequently compare their health condition with that of more severe patients around them and experience positivity with the recovery of other patients. One way in which compassion may boost a patient’s well-being is by increasing a sense of connection to others, especially with family. According to D2, “This is one of the first studies exploring hope perceptions in patients and carers facing terminal cancer. It highlights important issues for patients and carers individually, but also for the patient and carer as a unit. The major themes and subthemes identified in the interviews suggest that, for family dyads, hope is an inner attribute at the very core of a human being, always present, albeit in varying strengths, depending on factors such as uncontrolled symptoms, feelings of anguish, or poor communication with clinicians. As with other studies of hope in palliative care patients, hope was important and dynamic ,41,42, wThe findings show that family dyads faced varied threats over the course of their experiences; however, they also identified elements that facilitated hope. Positive interpersonal relationships enhanced hope, by making patients feel they were being well cared for and supported ,44. SuppConsidering that hope is a key concept in palliative care, hope-fostering interventions should be developed. A recent meta-analysis  revealedIn line with Sulmasy et al. , for manThe intersubjective form of hope can be experienced in interpersonal communication, but also in connection with nature. The chance to be close to nature helped patients avoid worrying about their illnesses and provided distractions from negative thoughts and feelings . In a phPrevious research shows that, when faced with a crisis, people often turn to spirituality or religion as they search for meaning, hope, and love . FeelingOur participants also expressed a primary hope that they would improve, and a secondary hope that others might also improve. This highlights the importance of research examining the perspectives and experiences of family dyads, including how their responses to suffering might affect their lives and generate a virtuous response to others . These fThe current study has significant implications for practice. Methods for providing hope-based palliative care support needs urgent consideration. The absence of strategies for providing adequate hope-based care to family dyads with high support needs establishes the need to reinforce and cultivate collaborations between palliative care professionals. A recent study about hope highlighted the relevant role of chaplaincy and spiritual care professionals in witnessing the hope of patients and families . TherefoAll palliative care professionals should receive education, training, and support to improve knowledge and preparation regarding hope-based interventions. In addition, they need to be taught to use humor to foster an emotional atmosphere and help lighten the burden of patients, caregivers, and health care professionals . Lastly,The strength of our study is its methodology, including the rigour of coding, the latent thematic development, and the triangulation of researchers. Within critical realism, this triangulation strategy and intensive cooperation increases credibility and reduces the risk of bias in data interpretation based on pre-conceived understanding and personal opinions ,28.Nevertheless, this study has several limitations. First, the findings cannot be generalized and transferred to other populations and contexts beyond the specific group that we interviewed. For example, our sample only included cohabiting heterosexual couples, most of them married. Other important compositions of gay, lesbian, and heterosexual couples engaging in palliative care should be explored in further research.Second, the recruitment process was challenging, with some potential participants declining to take part due to their frail health. The sample was limited to Catholic participants of European cultural origin and from the central region of Portugal. Different local geography , (in)equity in access to palliative care, and differing legacies of health care allocation can justify different patterns of participant responses. For that reason, palliative patients from different geographic regions and cultural/religious backgrounds, education levels, and incomes may differ in how they describe their hope and how hope is promoted. This is important for more robust interventions in palliative care that measure hope and/or hopelessness as an outcome .Third, the dyads were interviewed once, so there is no information on stability of their attitudes, which were probably significantly influenced by their actual symptom load at the time of interviewing. Furthermore, interviews could have inhibited patients from sharing information they would not want their FC to know. This limitation was addressed by giving patients the freedom to indicate the FC with whom they felt most comfortable.Although the qualitative method was essential to explore the perceptions of the family dyads, future research should also explore which strategies healthcare professionals can effectively use to foster hope among palliative care patients. Moreover, patients and FCs were asked to recall their experiences of hope during cancer progress until the EOL phase. The possibility of memory and recall bias needs to be considered.This study provided insight into how hope is experienced in dyads of EOL patients and their significant others and loved ones. A holistic, person-centred approach to support hope in family dyads experiencing advanced ill health is essential, and must incorporate uncertainty and control as key drivers of the hope process. This care approach will not always be appropriate for everybody, but moving the emphasis of EOL discussion towards the present, with hope, may be a good starting point. Often, health care operates “for” people rather than “with” them, finds it hard to involve people in decisions, and views people’s goals only in terms of clinical outcomes. Therefore, health care professionals should address and maybe even mediate between the patient and carer in their different EOL approaches. Thus, a balance must be struck between respecting the wishes and boundaries of individual patients and FCs, while at the same time having a conversation with those in need, that is not limited to superficial matters.


Around one in ten people who contract COVID-19 report persistent symptoms or ‘long COVID’. Impaired mental health and well-being is commonly reported, including anxiety, depression and reduced quality of life. However, there is limited in-depth research exploring why mental health and well-being are affected in people experiencing long COVID.To explore factors affecting mental health and well-being from the perspective of people with long COVID.Semi-structured qualitative interviews were audio-recorded and transcribed. Data were analysed using reflexive thematic analysis. Twenty-one people with long COVID participated in the study. Participants were eligible if they self-reported a positive swab test/antibody test or one or more commonly reported COVID-19 symptoms at illness onset. and experiences of one or more long COVID symptoms ≥3 weeks following illness onset.Five themes were identified across participant accounts regarding factors affecting mental health and well-being, including symptoms causing severe disruption to daily life, lack of service and treatment options, uncertainty of illness trajectories, experiences of care and understanding from others and changes to identity.People with long COVID experience a range of factors that negatively affect their mental health and well-being. Providing patient-centred health services that integrate rapidly evolving research in this area is important, as are peer support groups and supported approaches to self-management. The effects of SARS-CoV-2 infection vary widely between individuals, from being asymptomatic to multi-organ failure and death. For many people, symptoms persist far beyond the acute phase of the disease.6 Current research suggests that approximately 10% of people in the UK will have ongoing symptoms 12 weeks after initial infection, and substantial numbers have symptoms lasting over 6 months.3 There is a growing burden of ill health from long COVID in the UK, alongside patient reports that their needs are not currently being met by existing health services.7 Long COVID symptoms can be variable and wide-ranging, relating to multiple organ systems, including respiratory, cardiovascular, neurological, psychological/psychiatric, gastrointestinal, musculoskeletal and dermatological; or they can be general and non-specific.8 Symptoms are likely to result from multiple potentially overlapping disease mechanisms.9 The most commonly reported symptoms include fatigue, breathlessness, cardiovascular abnormalities, decreased cognitive function, difficulties sleeping and abnormalities in taste and smell.10 Comparisons have been made between long COVID and other conditions, including post-intensive care syndrome, myalgic encephalomyelitis/chronic fatigue syndrome and the sequalae of infection with coronaviruses like SARS and MERS, which can cause protracted multisystem disease.11 However, although certain shared features exist, caution should be applied when drawing parallels with symptoms experienced in other conditions, as doing so may detract from appropriate investigation and management.5Long COVID prevalence estimates are inconsistent because of the rapidly evolving research base, non-standardised diagnostic criteria and different populations studied.12 However, reports suggest multiple difficulties accessing appropriate care, including uncertainty about treatment options and a lack of coordinated care.14 These experiences have resulted in patients resorting to self-management of symptoms through trial and error and via information and advice taken from informal peer support networks.15An evolving research base has sought to understand the types of services and support available to people experiencing long COVID, whereas UK clinical guidelines recommend supported self-management and a multidisciplinary approach to rehabilitation following investigative tests, as well as active monitoring and follow-up.16 The PERMA  theory of well-being represents five elements required for individuals to flourish, including positive emotion, engagement in tasks and activities, connections with others, having meaning and purpose, and a sense of achievement.17 Adapting to living with a chronic illness has the potential to profoundly affect multiple components of well-being as described by the PERMA theory. For example, reduced function can lead to difficulties engaging in daily activities, a reduced sense of purpose and achievement, and increased social isolation, which influences mental health;18 having a long-term physical health condition is associated with a twofold increased risk of depression or anxiety compared with the general population.19 Social identity theory also posits that having meaning and purpose in the roles that individuals play within society is crucial for health and well-being, and that any disruption in ability to fulfil these roles, for example as a result of chronic illness, can negatively affect mental health.20Well-being can be defined as functioning well at both a personal and social level.22 with cognitive processing disorders (or ‘brain fog’) also frequently reported.9 Mental health effects are likely multifactorial in origin, including the psychosocial context of the pandemic,24 pre-existing individual susceptibilities25 and physical biological processes related to SARS-CoV-2 infection.25 Although mental health effects are widely reported, there is limited in-depth research exploring the perspectives of people with long COVID regarding factors shaping their mental health and well-being. Addressing this gap has been identified as a key priority by an international, multi-stakeholder forum,26 to improve understanding, promote empathic healthcare interactions and facilitate development of patient-centred and appropriate healthcare provision for people with long COVID. Therefore, this study aimed to explore the perspectives of people with long COVID with regards to how their mental health and well-being has been affected.Effects on mental health and well-being are commonly reported by people with long COVID, in particular features of anxiety, depression and post-traumatic stress disorder,27 newsletter and through social media. Seventy-four people responded to the invitation to take part, and from this participant pool, 53 people were purposively sampled to ensure that people of different ages, ethnicity and genders were represented in the study. All 53 potential participants were sent a study information sheet and a screening form to determine eligibility. Twenty-nine screening forms were returned, we received no further response from 23 people and one person declined further participation. Twenty-one people went on take part in the study.We conducted semi-structured qualitative interviews with people who self-reported long COVID. Participants were recruited via an online long COVID support group, an advertisement in the University College London COVID Social Study28 Eligibility criteria consisted of a positive swab test/antibody test or one or more commonly reported COVID-19 symptoms at illness onset ; and experiencing one or more broader symptoms ≥3 weeks following the onset of their first symptoms28 (Supplementary Appendix 1 available at https://doi.org/10.1192/bjo.2022.38). Eligible participants were encouraged to ask questions about the study before providing written informed consent to take part and completing a demographics form. All participants gave their written informed consent to participate in the study. The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008. All procedures involving human patients were approved by the University College London Ethics Committee (project identifier 14895/005).To assess participant eligibility for the study, we used the post-acute COVID-19 criteria proposed by Greenhalgh et al, which was broadly representative of the consensus at the time.29All interviews followed a semi-structured topic guide and were audio recorded. Questions explored onset and initial impact of COVID-19 symptoms, ongoing impact and development of longer-term health problems, impact of long COVID on social lives and mental health, and worries about the future. Example topic guide questions are listed in https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/support-services/nvivo-downloads) and analysed using reflexive thematic analysis.30 An initial coding framework was built based on concepts taken from the topic guide. Initial codes were organised and labelled under the following headings: impact of long COVID symptoms on normal life, social activities, health and well-being; ability to access services and support; and activities that protect mental health. Codes were applied to the text with line-by-line coding, and when new concepts were identified within the text, additional codes were added to the framework.. Three transcripts (14%) were independently double-coded by three researchers  and K.E.J.P. ) who met to discuss emerging codes and themes and generate the coding framework. H.A. then applied the coding framework to all remaining transcripts, adding new codes as transcripts became available and until no new codes were identified. Codes were then arranged into themes pertaining to the research questions. The research team met to finalise themes and approve the final report.Audio files were transcribed verbatim by an external transcription company. Personal and identifiable data were removed from transcripts to maintain confidentiality. Transcripts were then imported into NVivo 12 software for Windows . Participants were aged between 26 and 70 years (mean 47 years) and were predominantly female (67%) and White British (67%). All participants reported a case of suspected or confirmed COVID-19 between 28 February 2020 and 11 January 2021, and experienced on average 12 symptoms (range 4–18 symptoms) for 29 weeks (range 8–52 weeks) at the time of interview, with the most common symptoms being fatigue (95%), muscle pain/weakness (86%), shortness of breath (81%), difficulties concentrating (76%) and memory lapses (71%). A total of 52% of participants reported a confirmed positive swab test or had tested positive for antibodies. Four participants were hospitalised during the initial phase of their illness. All participants were still experiencing symptoms at the time of the interview. See We identified five themes regarding factors shaping mental health and well-being for people living with long COVID: symptoms causing severe disruption to daily life, lack of service and treatment options, uncertainty of illness trajectories, care and understanding from others, and changes to identity. Long COVID symptoms led to severe disruption to daily life and activities (theme 1) and prevented participation in enjoyable activities that might normally protect participant well-being. This disruption was exacerbated by a lack of service and treatment options (theme 2) and by uncertainty of illness trajectories (theme 3). This, in turn, made managing uncertainties regarding trajectories, and pushing for service and treatment options even more challenging.A lack of service and treatment options (theme 2) led to worries of exacerbation of symptoms and continued uncertainty around illness trajectories (theme 3); uncertainty of illness trajectories (theme 3) led to difficulties planning daily activities (theme 1), and subsequently affected ability to engage in enjoyable activities.Positive experiences of care and understanding from others (theme 4) protected mental health, whereas a lack of care negatively affected well-being.Ongoing long COVID symptoms that led to severe disruption to daily activities (theme 1) and uncertain illness trajectories (theme 3) led to changes to identity (theme 5), which negatively affected mental health because people were no longer able to fulfil their usual social roles.Most participants described leading active lives before COVID-19 infection, working in full-time employment, participating in regular exercise and having busy social lives; however, ongoing symptoms had significantly curtailed activities of daily living.‘I haven't showered for 3 days. I have to think about showering, I have to sit down and spend like 2 hours thinking about will I be able to manage showering today? Because even taking a bath makes me tired’ .Ongoing fatigue and ‘brain fog’ were commonly described as having a huge impact on people's working lives, with almost half of the sample not able to fully return to work: ‘I couldn't have even picked the laptop up and opened it, to be honest, you're completely just wiped out’. The impact on daily life for some participants was profound, resulting in difficulties ‘even being able to manage basic household chores’ or struggling to maintain personal care:‘That's kind of disheartening … I could make a really nice meal which before lockdown would've been the kind of thing that I would a) like to do, but also for me personally, I see it as more of if you've had a bad day I'm going to do a nice thing for myself and invest in making a nice dinner for maybe me and someone else’ .Some participants described experiencing a prolonged loss or change in taste and smell that resulted in no longer being able to enjoy food. For those who had previously used cooking as way to de-stress, this was experienced as particularly detrimental to well-being:‘I want to be able to have laughter, I want to be able to go out and be the life and soul of the party, which I'm just not anymore, so I do grieve’ .Many participants were no longer able to participate in social activities, which had a profound impact on their mental health and well-being:‘I couldn't really talk to people … I just limited my [family member] to twice a week calls and I had to have short, 5-minute calls because more than that then I'd have difficulty breathing. So that was a bit frustrating that I couldn't actually talk to people’ .For some, the severity of their ongoing symptoms meant they were unable to socialise, mainly because of fatigue and the need to conserve energy by pacing oneself: ‘I haven't got the energy to interact.’ For one participant, socialising became difficult because of breathlessness that made holding a conversation difficult:‘Well, early days, I'd get emails and stuff and then it's just drifted off. It's my own fault because I could phone up and chat to people, but I just feel it's a bit boring. How are you? You tell them how you are …. How's your heart? You tell them, so, I'd rather not dwell on it. And I've got nothing else to talk to them about now’ .Participants also described withdrawing from their social lives because of ‘not wanting to worry people’ and feelings of ‘guilt because I feel like I'm pouring more pressure on [my family]’ by sharing their experiences with others. Others withdrew because they felt that they had little to contribute to friendships because they were unable to focus on anything other than their health: ‘I was reflecting and thinking maybe I was talking about it all the time’.‘When my relapse started and into 3 weeks of it I think it was when I was in bed most of the time, I had these awful, awful feelings of almost … I felt like crying but I wouldn't, but I'd change my mindset to, oh I'll do something more positive than lying in bed. I had some pastels and I was doing a little bit of drawing, and I'd listen to the radio and put music on and stuff. I'd just alter it just by changing my mind from focusing on, oh I feel ill and will I ever work again, will I ever be able to do anything again, to oh well I'll do this’ .Participants described the importance of engaging in new hobbies and activities or adapting previous activities to give them respite from their health problems, to support their well-being and to create a sense of achievement. Just under half of participants described engaging in low-grade physical activity such as walking: ‘I'm just doing some very gentle, gentle stuff. I'm walking’. Playing or listening to music or podcasts were important for distraction and relaxation:‘I've been trying to do some interesting things, so I watched a ballet online from the Royal Opera House, I went to a book launch of a book. I thought, I've never done that before, I'll do that online. All sorts of opportunities. But even the things that are joyful and enriching, and would normally be lovely and powerful, if I get really excited about it, it just makes me tired’ .However, for many participants, participating in enjoyable activities that could improve or protect mental health was not possible, such as physical activity: ‘I can't do my exercises, and I can't keep my body fit’, getting out of the house: ‘I've been stuck at home for the whole year’, or engaging in arts and culture:‘That (online game) has been an absolute lifesaver for me because it's kept my brain ticking over a bit, and given me, just a challenge, so I'm very fortunate with that. I'm sure other people have other things, but because I've got, naturally a competitive nature, with my golf, and I used to play tennis’ .Some participants described replacing their usual physical activities with competitive activities that could be undertaken at home, such as online gaming:‘What's bothering me at the moment is I'm not in any plan or regime. So, I'm not on any pharmacological medicine. I'm not on any physical rehabilitation. So, I'm not on any programme. So, I just feel like I'm ambling. I'm just in the ether … A year of my life has gone. I can't carry on’ .Although just over half of participants had received investigative tests, many participants described a lack of follow-up: ‘we're now on week 15 and I've still not had any results’ and ongoing stress and worry that the treatments or services they needed to manage their symptoms were unavailable, inaccessible or indeed were available, but not being offered to them:‘I had several chest x-rays, and things, so I was looked after. But there was nothing wrong as far as they could see, but obviously, I was still having symptoms. But I was a bit frustrated. It was several months by then, and I was thinking why has nothing been set up yet for people who are suffering?’ .Several participants described their frustration at being unable to access treatments or services because diagnostic tests were inconclusive or produced negative results despite ongoing symptoms:‘There are no COVID clinics or anything in this area, so no. I have spoken to the doctors quite a lot since I've been ill, and they've been marvellous, but they're still, we don't know, we're still waiting for the clinic to open’ .Although many participants described being aware of long COVID clinics, there was confusion around the referral process: ‘we'd been rejected because they've changed the criteria’, or there was a lack of available services in different areas of the UK:‘So, without that private healthcare, I don't think I would maybe have got over some of the symptoms that I had because, as I say, the GP [general practitioner] was just obviously it's new for them as well, but they just weren't offering any kind of help at all. And I remember when I went through them and says, well, I can't actually refer you to the specialists with what you're wanting under the NHS’. .Just under a third of participants who described being unable to access National Health Service (NHS) care had gone on to access private healthcare, either by paying for care themselves: ‘the only door that is half-open, is if I decide to pay and go privately’, or through insurance provided by their employer:‘There's a lot of relapses involved … which, initially, was very, very demoralising, because you think, or I would think, I've turned a corner, I'm going to get better, and then it would just suddenly get, like take two steps forward and three or four steps back. And that's characterised the entire journey I've had with COVID, up until now really’ .Most participants described feelings of anxiety around the uncertain symptom trajectories they were experiencing, with fluctuating periods of having ‘good days’ of feeling well and even, at times, ‘euphoric’ followed by ‘bad days’, periods of intense exhaustion and being unable to get out of bed. One participant described ‘the ebb and flow of it all’ as the most difficult thing to deal with:‘I can't live like this, how am I going to go on in the future, am I going to get worse, am I going to get better? Obviously, you think of everything. How are you going to look after your kids, the family, your work situation, how are you going to pay your bills’ .For others, uncertainty about the future and how long their symptoms might continue led to increased anxiety about employment, finances and family life. Participants described feeling less in control of their lives as time went on:‘I take the opportunities I can. So, a friend's been off work and she messaged me yesterday and said, weather's nice … do you fancy a walk in the park? And I said oh great, yes, lovely, I'm free from here and here. Technically, that was too much in a day, and I knew it was too much and I paid for it later in the evening and this morning, but it was so nice to see her’ .Participants also described having to weigh up the potential consequences of participating in activities that protected their well-being but that ultimately would lead to a relapse, against the immediate short-term benefits to their mental health:Having a supportive and understanding social network, including friends, family and health professionals, was described as important for participant well-being, particularly when faced with fluctuating symptoms and uncertainty (theme 3). When this support was not available, participants described negative effects on their well-being and feelings of anxiety and loneliness.‘I have come across a few doctors where I've felt they've made me feel a bit stupid when I'm worrying about certain things … So yes, there's that worrying that people just think you're making it up. I think it's just that anxiety thing, for me that I don't want to be an anxious person. And I think if I sense that I'm talking to a doctor, or sometimes they've said it outright, you're an anxious person, and I think oh great they just think I'm anxious’ .Participants frequently reported feelings of frustration or anxiety because of a lack of understanding and support from health professionals. Experiences that exacerbated poor mental health included feeling ‘ignored’, ‘abandoned’ or ‘being brushed aside’, feeling that health professionals were unwilling to help or listen, a lack of continuity of care, and instances of diagnostic overshadowing whereby symptoms of long COVID were attributed to the participant's mental health:‘In the early days, my GP was fantastic … I sent him a letter to tell him what was going on in my life, all my symptoms and everything. And I said, I am so sorry about harassing you. And he phoned me up, and he said, keep harassing me, he said, if you don't tell me, I don't know’ .Even when health professionals were unable to offer appropriate medical treatments or answers, it was still important for participants to feel heard and for their stories to be believed and thus validated:‘I've had a couple of other friends who said, look, don't sit alone at home being miserable. If you need anything, if you just need to talk to someone, just give me a bell, or message me or whatever. So, that's been nice, I think a lot of people didn't realise how ill I was, and I think that when I went back to work, they were quite shocked, and were keen to reach out’ .Participants described the importance of receiving support and empathy from their social networks to protect their well-being during difficult times:‘A lot of people don't understand long COVID, so when you explain to them, I'm still not feeling right 6 months down the line, a lot of people have said, I think you're just worrying too much. That's what I think my parents come back with. They keep saying to me, you worry too much, there's nothing wrong with you’ .In the initial stages of illness, participants described receiving emotional and practical support from family and friends: ‘[My sibling] used to do the shopping, and she'd sometimes do the cooking and bring it over’. For some participants, however, as their illness progressed and symptoms remained, emotional support became less available because of a lack of understanding or unwillingness to acknowledge that participants could still be unwell:I'd walk up to the shops, buy one thing from the chemist or something and walk back. And I'd meet someone I knew, and I'd say, I've had COVID, they would step back, and so I stopped doing it because I realised that for a lot of people, I was still contagious, and I understand that. And I think that's why I isolated, because it was quite difficult being around people that knew, who were not comfortable around me. And that's even after 3 or 4 months afterwards, and even now, if I mention to somebody that I had COVID in March, they step back, and it is quite a difficult thing to deal with’ .Although most participants had not felt stigmatised because of their long COVID, a small number of participants reported experiencing external stigma directed at them from others. This included examples of family members ‘avoiding us like the plague’ for almost a year after initial symptoms or people behaving differently toward participants once they disclosed that they still had not recovered:‘I think the stigma that was I mean around being depressed and having any mental conditions. I think people kind of judging for that. I've seen people do that. Especially in my friends’ circle’ .For one participant, feelings of stigma arose from the impact of long COVID on mental health and worries that she might be judged by others for not being able to cope:‘And the best support I got was from all the Facebook groups, believe it or not. That's where I found a lot of information, because everyone else was on a similar timeline to me. So, we were all going through the same symptoms, so I knew I wasn't going crazy’ .Many participants were members of online long COVID peer support groups and found them empathetic and supportive: ‘I was just feeling really validated that I'm not alone’. These groups also facilitated access to information and resources on management strategies and services:‘I went on Facebook to go on one of those long COVID groups, which I looked at for a couple of days, but to be honest it started doing more harm than good looking at those, especially in the state I was in at the time’ .Others reported mixed experiences of accessing online peer support groups, with some feeling overwhelmed: ‘I think that can be quite scary when you listen to some of that’, and others acknowledging that some of the information was unhelpful or untrustworthy:‘So, at least I feel like they're trying to do something. There's a lot on there, which is negative. I try not to read that because … But that's like any social media isn't it, you just have to choose’ .On balance, however, most participants found the groups helpful and actively filtered out the ‘rubbish’:‘I don't care anymore that I'm getting a bit soft in my body, that I used to do eight daily exercises and stuff like that. I don't care that I'm looking older … and I suppose in some ways, that bothers me. Every now and then, I just think, this isn't you’ .‘I look like a big six-foot two bloke, but actually have jelly in my arms, just absolutely no energy in there, no physical strength at all. So yes, you feel less confident’ .Participants described profound changes to their sense of self because of long COVID: ‘I'm a different person now’, and described feeling a loss of certain attributes and self-confidence that had previously defined who they were: ‘I think also it's stripped me of me’. For some, this change manifested itself as a loss of interest in self-care, a decrease in physical fitness: ‘I feel weaker’, and consequently changes to their physical appearance:‘I do feel a little bit lost because I just don't know. I was a carer and now I'm being cared for. I've had to change, and I've struggled coming to terms with it a little bit’ .‘So yes, there's been a big change of identity. I'm a recovering patient from COVID rather than a meritorious consultant … ’ .Others described their identity as diminished because they were no longer able to fulfil their usual caring responsibilities and social roles as professionals, partners, parents and friends, resulting in a sense of loss and feeling ‘like a burden or waste of space’:Our study found that people with long COVID experience unique challenges to their mental health and well-being related to the impact of the symptoms on their lives, as well as interactions with health services, family and friends. Limited care and understanding from others, a lack of service and treatment options, disruptions to daily life and activities brought about by symptoms, the uncertainty of illness trajectories and changes to identity all contributed to a deterioration in mental health. Participants often described barriers to engaging in activities that might protect their mental health; however, being listened to and feeling validated by health professionals, family and friends, accessing peer support and engaging in enjoyable activities within the limitations of their condition, were identified as important for psychological well-being. The relationships between the factors identified in our themes and poorer mental health and well-being are likely to be mutually reinforcing. As people experience worsening mental health and well-being, their ability to search out and fight for the limited services that exist is also likely to decrease. Similarly, the mental health and well-being symptoms experienced may compound other symptoms such as fatigue and breathlessness. As such, the bidirectional relationships between many of the drivers of poorer mental health, and worse mental health itself, have the potential to create detrimental cycles of reinforcement.14,31 However, our work extends previous findings by highlighting which features of long COVID are seen as most significant in shaping mental health and well-being from the perspective of people with lived experience. Our findings also improve understanding of how these features are experienced by people with long COVID, and as such, present potentially useful considerations for healthcare, self-management and wider society.Our findings align with, and extend, existing research into experiences of long COVID. They echo work that has previously described symptoms, impact on daily life and interaction with healthcare providers.31 The PERMA theory of well-being posits that engagement in tasks and activities is vital to maintaining positive well-being,17 therefore these limitations have strong negative effects on mental health through limiting participation in enjoyable and meaningful aspects of life and those that gave individuals their sense of identity, including work, leisure and social activities. Social identity theory suggests that we derive meaning and purpose from the roles we play within communities and groups, and that this positively affects individual health and well-being;20 when participants in our study were no longer able to connect with their previous positive identities and these were replaced with illness-related identities, this posed a threat to well-being. Experiences of loss and threatened identity were also found in a qualitative study involving 114 people with long COVID,14 and research regarding other chronic diseases such as chronic fatigue syndrome.32 Relatedly, a small number of participants in our study described a lack of understanding from and feeling stigmatised by others as detrimental to well-being. Previous work on chronic illness has theorised that these experiences of illness related stigma may reduce well-being via a reconstruction of an individual's identity with both illness and stigma incorporated.33In keeping with the growing body of research, our participants reported multiple, varied, relapsing-remitting symptoms often severely affecting their ability to engage in daily life, resulting in a reduced sense of achievement, meaning and purpose.34 Other research, particularly from earlier on in the pandemic, also identified various barriers to healthcare,31 including a lack of specialist service provision and limited understanding of the illness from healthcare professionals. Our study also shows that some people resorted to accessing private healthcare and therefore felt better supported to manage their symptoms. This finding raises concerns around health inequalities for people with long COVID who are unable to afford private healthcare. Potentially, with the creation of specialist long COVID services, increasing research and clinical guidelines, such barriers should become less of an issue over time, although given other competing needs faced by healthcare services, access could remain an issue. Feeling ignored or not believed by healthcare professionals, family members and friends has been commonly reported.31 These experiences are similar to those described by people with myalgic encephalomyelitis/chronic fatigue syndrome.35 Our findings suggest such experiences have particularly powerful negative effects on mental health.Our findings identified the relevance of relapsing-remitting disease trajectories as important drivers of negative mental states because of related uncertainty about the future, which is well-established as a driver of anxiety and depression for people with various chronic diseases.13 was important. Additionally, long COVID peer support groups appear valued by some individuals, although the potential for overwhelming and inaccurate information, as reported by participants in our study, is an important consideration.Factors positively affecting mental health and well-being were infrequently mentioned. As in previous work, we did find that interactions where people felt listened to and believed were greatly valued, and empathy from health professionals, even when faced with limited treatment and referral options,Certain limitations should be discussed. First, our sample included people who met clinical diagnostic criteria but without laboratory confirmation of COVID-19. This is in keeping with relevant guidance and excluding people without laboratory confirmation would have limited our ability to capture experiences of long COVID symptoms lasting up to 12 months, as testing was limited in the first part of the pandemic. Second, a degree of selection bias may have occurred toward those with mental health and well-being effects, and people may have been more likely to share their experiences if they were experiencing extremely positive or negative effects to their well-being. Third, our sample consisted of 21 people living in the UK, therefore assessing the external validity beyond this context is not possible, but likely to be relevant. Also, we did not collect specific data on where people lived within the UK, and we are therefore unable to comment on any potential regional variations in service provision and support. Most interviews were conducted over a 4-month period between November 2020 and March 2021, which may not have captured significant changes in long COVID healthcare provision and an increase in knowledge and awareness of long COVID over time. Finally, online methods of recruitment and data collection may have excluded some participants without access to the internet from taking part, although this method did enable participants to be interviewed in their own homes across different parts of the UK.36 Our findings regarding challenges in communicating long COVID experiences to family and friends suggest that it could be of value to adapt similar education and support materials and guidance for informal support networks. Given participants described specific mental health components of long COVID, these should be acknowledged as part of long COVID treatment pathways, and potential contributory factors identified and addressed where possible. Supporting individuals with long COVID in adapting their work, social and physical activities to meet their health capabilities, and to help individuals maintain or adapt their social roles and identity, could also be valuable as part of tailored occupational health programmes.12 Long COVID guidelines now include the ‘Pace, Plan and Prioritise’ principles around ‘pacing’ physical activity for self-management,37 but whether this strategy improves symptom management remains unclear, and participants in previous research describe receiving conflicting advice.38 Additionally, effects on social participation suggests that there may be a role for tailored community groups and social prescribing, although this should be accompanied by research and evaluation to assess appropriateness and effectiveness.Our findings emphasise and support the need for accessible, patient-centred, specialist multidisciplinary healthcare provision. From healthcare professionals to family members and friends, ensuring people with long COVID are listened to, and their experiences validated, is vital. Importantly, optimising these experiences now features in learning modules and guidance for general practitioners.