Although stakeholder involvement in policymaking is attracting attention in the fields of medicine and healthcare, a practical methodology has not yet been established. Rare-disease policy, specifically research priority setting for the allocation of limited research resources, is an area where evidence generation through stakeholder involvement is expected to be effective. We generated evidence for rare-disease policymaking through stakeholder involvement and explored effective collaboration among stakeholders.We constructed a space called ‘Evidence-generating Commons’, where patients, family members, researchers, and former policymakers can share their knowledge and experiences and engage in continual deliberations on evidence generation. Ten rare diseases were consequently represented. In the ‘Commons’, 25 consecutive workshops were held predominantly online, from 2019 to 2021. These workshops focused on (1) clarification of difficulties faced by rare-disease patients, (2) development and selection of criteria for priority setting, and (3) priority setting through the application of the criteria. For the first step, an on-site workshop using sticky notes was held. The data were analysed based on KJ method. For the second and third steps, workshops on specific themes were held to build consensus. The workshop agendas and methods were modified based on participants’ feedback.The ‘Commons’ was established with 43 participants, resulting in positive effects such as capacity building, opportunities for interactions, mutual understanding, and empathy among the participants. The difficulties faced by patients with rare diseases were classified into 10 categories. Seven research topics were identified as priority issues to be addressed including ‘impediments to daily life’, ‘financial burden’, ‘anxiety’, and ‘burden of hospital visits’. This was performed by synthesising the results of the application of the two criteria that were particularly important to strengthen future research on rare diseases. We also clarified high-priority research topics by using criteria valued more by patients and family members than by researchers and former policymakers, and criteria with specific perspectives.We generated evidence for policymaking in the field of rare diseases. This study’s insights into stakeholder involvement can enhance evidence-informed policymaking. We engaged in comprehensive discussions with policymakers regarding policy implementation and planned analysis of the participants’ experiences in this project.The online version contains supplementary material available at 10.1186/s40900-023-00515-5. Stakeholder involvement is significant for effective policymaking in the field of rare diseases. However, practical methods for this involvement have not yet been established. Therefore, we developed the ‘Commons project’ to generate valuable policymaking information and explore effective ways for stakeholders’ collaboration. This article explains the process and results of 25 continuous workshops, held from 2019 to 2021 with 43 participants, including patients, family members, researchers, and former policymakers. The main achievements of the discussion that took place in the ‘Commons’ included a presentation of the overview of the difficulties faced by patients with rare diseases and formulation of high priority research topics.First, the difficulties faced by patients with rare diseases were grouped into 10 categories. Second, seven research topics were identified as priority issues including ‘impediments to daily life’, ‘financial burden’, ‘anxiety’, and ‘burden of hospital visits’. During the project process, positive effects such as capacity building, opportunities for interactions, mutual understanding, and empathy among the participants, were identified. Beyond the context of the field of rare diseases and science of policy, these findings are useful for the future of society, including co-creation among stakeholders and patient and public involvement. Based on this study’s results, we have initiated communications with policy stakeholders in the field of rare diseases, with the aim of policy implementation.The online version contains supplementary material available at 10.1186/s40900-023-00515-5. In recent years, the roles of patients and their families have changed dramatically in medical practice, medical research, drug discovery, and medical device development –3. In meIn the field of medicine and healthcare, the ways of policy development  are being explored in many countries. In the context of policymaking, patient involvement has attracted increasing attention . Policieinformation that can be referred to when forming a policy.To effectively allocate limited resources, they should be prioritised. From the perspective of evidence-informed policymaking (EIPM) which has recently gained recognition, this priority setting should be based on evidence . However. and Parkhurst examined the characteristics of information that can be evidence for policymaking from several perspectives [Although no consensus exists on the definition of evidence, Cash et alpectives , 22. Thepectives .. pointed out that patients, as concerned individuals, can generate better evidence for all three attributes by being involved in the evidence generation process through structured mechanisms [Based on this concept, Katirai et alchanisms . While tchanisms –25. Specchanisms , 27. Howchanisms . In delichanisms –31. Howechanisms , and thechanisms .Rare-disease policy, which has been prioritised in many countries in recent years, appears to be one area where evidence generation through stakeholder involvement, as discussed above, is expected to be effective.Though the definition of rare disease varies from country to country, it refers to diseases that exhibit a certain prevalence (e.g. less than 1 in 1600 in the US and less than 1 in 2000 in the EU). More than 6000–7000 diseases have currently been identified, with the total number reaching up to 1.5–6.2% of the population worldwide . Many ofIn Japan, systems for rare diseases have been built within the framework of ‘Nambyo (intractable diseases)’ since the 1970s . In 2014Against this background, we designed the Commons Project with two objectives: (1) to generate evidence that contributes to policymaking in the fields of medicine and healthcare, particularly in the field of rare diseases and (2) to explore, through practice, effective stakeholder involvement and, particularly, specific ways of collaboration for such evidence generation. Here, the ‘Commons’ refers to a place where patients, family members, researchers, and policymakers can share their knowledge and experiences, and engage in continuous deliberations on evidence generation, with the ‘living social system of creative agents’, which consists of shared resources and the communities that manage them, by devising their own rules, traditions, and values, as argued by Bollier . AccordiParticipants were recruited from patients with rare diseases and family members, and each gave consent for participation in the research. For the recruitment, the research team’s networks from the previous/ongoing studies conducted by us were utilised, including RUDY JAPAN , which iAs described above, several methods for priority setting with relevant stakeholders have been reported. However, we did not know whether methods used in other countries were appropriate for Japanese society. We also did not have an established methodology to train participants. For these reasons, we decided to develop a new method to set a research priority in the rare-disease area.Consecutive workshops were held in the ‘Commons’, with participants discussing the themes set out in each workshop. To respect stakeholders’ diverse values and beliefs and ensure fairness in the treatment of views and interests throughout the project, the participants were asked not only to think about the disease with which they had a first-hand experience but also to think beyond their disease area. The researchers specialising in research ethics and governance  acted as facilitators in the workshops. The main facilitators (AK and KK) explained the themes and discussion points at the beginning of the workshops and participants shared their opinions on each theme. Individual thinking time was provided before all group work, and each participant was given the opportunity to speak. In workshops where consensus was required, the facilitators proposed a consensus draft, based on participants’ opinions. If the participants disagreed on the same point, an amendment was proposed based on the differing opinions. This process was repeated until a final agreement was reached. The findings were also synthesised, based on participant consensus. According to the final agreement in each workshop, the facilitator prepared a proposal for the integrated findings. The participants shared their opinions on the proposal and decided on the final results. Workshop themes were broadly divided into three steps for priority setting Fig. : (1) claWe employed a reflexive approach by which themes and discussion points were modified as we went along to reflect the opinions and ideas that had emerged in previous meetings. Additionally, the setting of research priorities by considering the difficulties faced by patients and their families as topics of academic research in the fields of medicine and healthcare from Step 2 onwards was not fully understood by the participants, and the discussion often deviated to policies and systems. Therefore, we devised a way to deepen the understanding that this study focuses on research as problem-solving by considering specific research questions in several research topics . Furthermore, we introduced a short talk to clarify the breadth of the field of ‘academic research’ in response to participants’ diverse understandings of the term ‘research’ and the tendency to equate it with clinical trials or clinical research.An on-site workshop was held for all the stakeholders in March 2019. A total of 28 participants, including 13 patients and family members from 7 disease areas, 12 researchers, and 3 former policymakers, attended the workshop. The workshop was designed to address the question ‘What are the difficulties faced by patients with rare diseases?’ and ‘What can we do to address them?’ The method was based on the ‘Opinion Eliciting Workshops’ proposed by Yagi and Nakagawa   to discuss the criteria to set priorities of the research topics when the extracted items about ‘difficulties faced by patients with rare diseases’ were considered as ‘research topics’. Prior to this, the participants were asked for the drafts of the ‘criteria for priority setting’. Based on the results, opinions were exchanged in an online workshop to develop candidate criteria.The participants were then polled using an online form to select 10 candidate criteria that they considered particularly important. The results were used to determine the criteria that should be prioritised for application in workshops. The decision on the selection criteria was made by all workshop participants.Seven online workshops were organised between January 2020 and January 2021 (each with 6–18 participants). Discussions were held on the application of the eight criteria for priority setting selected in Step 2 to set priorities for research topics which were clarified as difficulties faced by patients with rare diseases. During the workshops, each participant first selected 5 to 10 research topics that fitted the criteria. Subsequently, following a discussion, they classified the topics into three categories: ‘good fit’, ‘moderate fit’, and ‘poor fit’ . The workshops were conducted with all the participants in one group when the number of participants was small, whereas the discussions were broken down into several groups when there were many participants.In two online workshops held in January 2021, two research topics identified as ‘research topics with high priority’ based on the results of the previous discussions were selected for brainstorming on specific research questions on research topics. The primary purpose of this step was to deepen participants’ understanding with regard to the focus of this study on research as problem-solving. The workshops were conducted using the online sticky note tool Apisnote , in whicAt the beginning of the study, 31 individuals initially participated in the ‘Commons’, including 14 patients with any of 8 diseases or family members, 14 researchers (including 7 clinicians), and 3 former policymakers.During the three-year research period, 25 workshops were held, including the four research steps described in the Methods section and those for reviewing previous study findings and considering subsequent directions Table . Table 1In the process, new members were added to the ‘Commons’ through the network of RUDY JAPAN and the introduction of a participant to the ‘Commons’. Eventually, the ‘Commons’ consisted of 43 participants: 21 patients with any of the 10 diseases or family members, 17 researchers (including 9 clinicians), and 5 former policymakers.Throughout the study, the ‘Commons’ positively affected the participants. All the project participants experienced mutual learning and personal growth, and trust was fostered through a friendly atmosphere of interaction among patients with common concerns as well as between patients and researchers. Specifically, some comments from the patients included: ‘It allowed me to think not only of my disease but also about patients with other diseases, which broadened my perspective’ and; ‘I was surprised at how many researchers in the world are willing to pick up patients’ voices’. Conversely, researchers’ comments included: ‘I realised that I had no idea what difficulties patients faced in their daily lives’ and; ‘I realised the difficulty explaining things in an easy-to-understand language that is not jargon’.A total of 31 items emerged after 228 sticky notes were coded with the ‘difficulties faced by patients with rare diseases’ presented at the on-site workshop. The results showed that patients with rare diseases faced highly diverse issues, not only limited to healthcare but also related to their daily lives, families, and social issues. Thus, we grouped the 31 items into 10 categories, such as ‘lifestyle issues’, ‘family’, ‘social issues’, and ‘recognition/understanding’.Based on the results of this analysis, the participants of the ‘Commons’ discussed how the overall picture should be organised. This led to general agreement on grouping by categories and items. However, changes have been proposed for some wording and grouping. Specifically, the category originally described as ‘social issues’ was changed to ‘social systems and infrastructure’. Furthermore, a suggestion was made to move the item labelled ‘prejudice and discrimination’, which was originally categorised under ‘social issues’, to ‘recognition/understanding’. Consequently, the initial 31 items increased to 33. An overall picture is shown in Fig. Following the workshop discussions, 22 criteria for priority setting were proposed, such as ‘research topics related to life and death’, ‘those related to physical function’, ‘those related to various quality of life (QOL) aspects such as psychological and lifestyle aspects’, ‘those related to many rare diseases’, and ‘those specific to rare diseases’. A total of 21 participants responded to the subsequent voting, including 12 patients or family members, 7 researchers, and 2 former policymakers. The results are presented in Table During the discussion, an analysis of the results of voting by each stakeholder was suggested. The results showed that the voting rate by the patients tended to be higher than that by the researcher side for criteria such as ‘research topics related to expected findings that lead to reducing the burden imposed on families and healthcare providers’ and ‘research topics that affect the surrounding environment, such as families and healthcare providers’.In the workshops held after these results were presented, it was first decided to select some criteria from the perspective that are particularly important for strengthening future research on rare diseases. Priority was given to those criteria that received the highest percentage of votes in the preliminary questionnaire, but the following two were not selected at that time for their respective reasons: the criterion ‘research topics related to life and death’, was considered to have already been given some priority in research and the criterion ‘research topics that cannot be solved without involving researchers or policymakers’ was considered to be more an approach to solving the problem than a criterion for selecting the research topic to be addressed. Three additional criteria added during the voting were also included in the discussion. Of these, the criterion ‘topics on which research has been set aside or delayed because the number of the patients with rare disease is so small, or the diseases were not life-threatening’ was deemed particularly important by the participants; therefore, we decided to select it.The criteria selected based on these discussions are presented in Box Subsequently, as a characteristic of the ‘Commons’ is the participation of different stakeholders, it was decided to select the criteria for which the patients and family members voted more than the researchers and former policymakers. After discussion on the three criteria that accounted for more than 70% of the total number of votes cast by the patient side, a decision was made to select criterion 5, ‘research topics that affect the surrounding environment, such as family and healthcare providers’, and criterion 6, ‘research topics on problems that cannot be resolved even though patients have been making their own efforts’. The decision was made not to select the other one, ‘research topics about which expected findings lead to reducing the burden on patients’ families and healthcare providers’, as it might be included in criterion 5.Furthermore, as the aforementioned criteria were selected from perspectives with which many participants agreed, we considered that some important perspectives were not covered solely by them. However, as it was impossible to incorporate them all, the workshop participants agreed that two of the most important criteria would be selected, namely criterion 7, ‘research topics related to children’ and criterion 8, ‘research topics where Internet use is expected to be an effective problem-solving tool’.The results of the application of the criteria selected in Step 2 are presented below. Notably, for criteria 3, 4, and 6, which were not applicable, conclusions could not be drawn during the actual application of the criteria because all research topics had a good fit to the same extent (criterion 4) or because of too wide a range of interpretation among the workshop participants (criteria 3 and 6); therefore, these criteria were not suitable for setting priorities.First, the results of applying criterion 1, ‘research topics related to various QOL aspects, such as psychological and lifestyle aspects’, led to the conclusion that the topics related to ‘lifestyle issues’, ‘recognition and understanding’, and ‘psychological issues’ had a good fit Fig. .Fig. 3ReDuring the application of criterion 2, ‘research topics related to expected findings meant to alleviate the pain and burden of the patients and lead them to gain “independence”’, the topics related to ‘healthcare’, ‘welfare’, ‘lifestyle issues’, ‘psychological issues’, and ‘social systems and infrastructure’ were identified to have a good fit Fig. .Fig. 4ReBecause these criteria were particularly important for strengthening future research on rare diseases, the results of the application of the two criteria were synthesised. Consequently, seven research topics were identified as priority issues to be addressed, including ‘impediments to daily life’, ‘financial burden’, ‘anxiety’, and ‘burden of hospital visits’ Fig. .Fig. 5SyRegarding criterion 5, ‘research topics that affect the surrounding environment, such as family and healthcare providers’, the following were newly identified as high-priority research topics, which had not previously been listed as such: ‘difficult to be understood or to communicate with others’, ‘difficulty obtaining information’, ‘poor communication with professionals’, and ‘delayed diagnosis’ Fig. .Fig. 6ReConcerning criterion 7, ‘research topics related to children’, and criterion 8, ‘research topics where Internet use is expected to be an effective problem-solving tool’, discussions were held in three separate groups, and the results were then consolidated. The research topics identified as a ‘good fit’ by all the groups were concluded as ‘good fit’ (indicated in red in the figures) in the ‘Commons’. According to criterion 7, ‘impacts on family’ and ‘concerns about working and schooling’ were indicated as being a ‘good fit’ , and the ideas were freely conceived outside the academic field. Although we only proposed research questions as an exercise, the specific difficulties and perceptions of patients and family members were shared with the researchers  through discussions on the subject, in a different way from the medical practice and previous workshops on this project. Consequently, researchers have gained significant new insights. To design actual studies in the future, refining the research questions through precise interactions between patients and researchers will be crucial. This is expected to result in novel findings. Furthermore, this process is time-consuming; the process itself leads to mutual learning, as discussed below.In this study, a space we called the ‘Evidence-Generating Commons’ was established to generate evidence for policymaking. The three main features of the methods are: (1) continual deliberations and co-creation among stakeholders, (2) examinations targeting multiple areas of rare diseases, and (3) outlining three steps for generating evidence.Several initiatives are relevant to this study, including PSPs by the JLA, where research priorities are set by stakeholders, such as patients, their families, researchers, and policymakers . In all Therefore, the participants could learn from one another about differences in ideas and perspectives from different standpoints, and trust was fostered through continual communication. Such mutual learning and trust-building contributed significantly to the deepening of discussions in the ‘Commons’. Specifically, during the initial steps, patients and family members took the lead in sorting out their difficulties. However, from the middle of the process, knowledge of ‘what research is’ was shared by the researchers and eventually compiled into an academic paper through the collaboration of both parties. This shows one way of co-creation through the complementary role of expertise drawn from patients’ experiences and researchers’ knowledge.In developing this new set of methods, the role played by information and communication technology (ICT) is significant, enabling the creation of new communication space. Our ability to conduct over 20 workshops in total, with participants from all over the country, is undeniably a result of internet use. Participants could attend from their living rooms on weekday evenings after they finished work or household chores, or while looking after their children. It also helped busy researchers find time for workshops. The Internet is particularly useful when patients are spread out geographical, especially when organising frequent on-site workshops would be difficult . HoldingTo date, most studies in the field of rare diseases have been conducted separately for each disease. The PSPs, which are typical examples of a research priority setting as described above, were also generally conducted targeting a single disease.However, a lack of research resources has been pointed out as a major issue in the field of rare diseases , 50, in Previous studies have found that priority-setting results are specific to the health and daily life problems faced by patients with a specific disease . HoweverThis study generated evidence in three steps: (i) clarification of difficulties faced by patients with rare diseases, (ii) development and selection of criteria for priority setting, and (iii) priority setting of research topics through the application of the criteria.In particular, clarifying difficulties enabled us to discuss the issues as something more familiar and imaginable. A significant advantage of this method is the facilitation of agreement among stakeholders with different standpoints and circumstances by dividing priority setting into the steps of selecting and applying criteria rather than directly setting priorities.However, during the discussions, the way of considering difficulties as research topics was not fully understood. In response to this, additional steps were taken to consider specific research questions. The primary purpose of this additional step was to enhance the patients’ understanding regarding the ‘research’. Indeed, the questions they created accurately represent the patients’ perspectives. Moreover, a short lecture by a researcher on ‘what research is’ was also given, which gradually deepened understanding and led to deeper discussions. Thus, when different stakeholders work together, ‘translating’ to bridge gaps in understanding and knowledge is important.The process of generating evidence described above also resulted in the establishment of an unprecedented ‘space’ for deliberations and co-creations. Here, we discuss particularly the effects brought to the participants and the versatility of the ‘Commons’.As described in the results, all participants of the ‘Commons’ experienced positive effects. These effects are in line with previous literature –57. The We also found the versatility of the ‘Commons’. In discussions in the ‘Commons’, as discussed above, opinions were sometimes expressed on measures to solve problems and policy proposals that go beyond setting priorities for research topics. This indicates a gap between the focus of this study on medical research and participants’ expectations of solutions to challenges. Conversely, this also suggests the versatility of the place of the ‘Commons’. We argue that this could be used as a method for deliberative democracy in the future; when stakeholders could be engaged to discuss how emerging technologies should be used in the field of medicine and healthcare.Finally, we discuss the results from a theoretical perspective. We particularly focused on how the methods of generating evidence in this study affected the nature of the evidence generated, in terms of the three attributes of evidence—credibility, saliency, and legitimacy , 22—in pFirst, the scientific validity or reliability of the evidence is ensured through a systematic method in three steps. The first step is to clarify patients’ difficulties as a starting point for discussion. Additionally, saliency is enhanced because it includes appropriate information for decision-makers and the audience. Furthermore, the two-step approach to prioritise the development and selection of criteria and the application to set priorities ensures legitimacy by contributing to a fair process in which specific statements do not overly influence the outcome.Second, targeting multiple rare diseases helps to contribute to the credibility of evidence by encouraging relative perspectives. Further, evidence that can be applied to many diseases is more salient for policymakers, especially in national rare-disease policies, because those that cover only certain diseases are considered inappropriate. Simultaneously, cross-disease examinations also improve the legitimacy of the evidence as a fairer consideration that is not biased towards one disease.Third, we would argue that continual deliberations and co-creation among stakeholders can generate reliable evidence through the complementary role of the expertise of patients and their families based on their experiences and researchers’ expertise. Moreover, patients’ participation with researchers in the process of generating evidence on various diseases indicates that the generated information conforms to the interests of patients and patient groups facing various difficulties presented in this study, as well as the interests of researchers seeking solutions through research. Furthermore, different stakeholders, such as patients, family members, and researchers from multiple rare-disease areas, were involved in the priority-setting discussions, and more than 20 workshops were held repeatedly to ensure procedural justice.In terms of salience, current policymakers’ non-participation in the ‘Commons’ may result in insufficient salience for them at present, although former policymakers who participated significantly contributed towards ensuring that the evidence was relevant for policymaking. In response to this, our strategy was not for current policymakers to participate in discussions in the ‘Commons’ from the outset, but to engage in dialogue with them based on information generated from the discussions in the ‘Commons’, and then compile it as final evidence. The strength of this strategy is that it has generated evidence that is more tailored to the needs of patients and researchers and not bounded by existing policy. Conversely, while the possibility of a direct link to policy implementation increases when the study is led by the government, drawbacks also exist, such as directing the study content to some degree and considering consistency with existing policy. Involving current policymakers while maintaining the strengths of this strategy remains a challenge. Certainly, for information generated from discussions in the ‘Commons’ to be demonstrated as effective evidence for policy, it should be referred to in policymaking, although in reality, it is only demonstrated by its implementation in policy. Presently, while information has not yet been demonstrated in the policy field as such, based on Cash’s argument, the three attributes are met and could be considered ‘evidence’.In summary, the quality of evidence generated by this study was strengthened from multiple aspects. A critical point here is that our approach would enhance EIPM by presenting methodologies for involving patients, researchers, and former policymakers in the policy making process and by fostering knowledge sharing among different stakeholders and consulting target groups to get their perspectives .Furthermore, information produced by stakeholders can be important and valuable not only for policy-making activities but also for a range of activities undertaken by respective stakeholders. For example, important decisions within the respective organisations, such as research funding by patient associations or the setting of research topics by researchers, could be better directed if they are evidenced and reasoned by information that is credible, salient, and legitimate.The main limitation of this study was the small number of target diseases and participants. The study ultimately targeted 10 rare hereditary diseases without curative treatment, and which carry a long-term disease burden. However, all the participants were in a condition and environment that allowed them to participate in the workshops and discuss their issues. Consequently, the views on diseases held by patients who could not participate in such discussions for various reasons were not adequately reflected. However, this does not mean such views are not reflected at all, because family members of patients with rare diseases, such as those with childhood-onset and cognitive impairment, participated in the workshops instead. It was particularly demonstrated that even in the case where patients found it difficult to participate directly in the discussion, their families could participate in reflections and deliberations regarding the patients’ opinions. Furthermore, as this study was conducted using ICT, the impact of the non-participation of those who could not participate in ICT-based settings for reasons such as ICT illiteracy on the results of this study needs to be examined separately.This paper reports on the Commons Project’s approach to generating evidence for rare-disease policies and effective stakeholder involvement for this purpose. The method was characterised by a systematic three-step process, cross-disease examinations, continual deliberations and co-creation among stakeholders, and taking difficulties faced by patients with rare diseases as a starting point to set research priorities in the field of rare diseases. The quality of these processed as evidence for policymaking has been discussed from a theoretical perspective, but policy implementation is still not complete. Most emphatically, positive effects such as capacity building, creation of opportunities for interactions with others, mutual understanding, and empathy were brought to all the ‘Commons’ participants throughout the process—the continual multi-step work as a research team beyond expectations at the time of project planning.In Japan, patient-led initiatives have become increasingly visible and had influences on policy making in recent years, including the passage of the Intractable Disease Law, as mentioned above , 41. SimWe will begin with full-fledged discussions with policymakers regarding policy implementation and plan to examine the participants’ experiences in this project.Additional file 1. Programme of the on-site workshop.


Providing intensive informal caregiving can cause caregivers’ overburden, possibly impacting successful ageing factors such as physical and mental health and social life. This article aimed to investigate how informal caregivers experience the impact of providing care for chronic respiratory patients on the process of caregiver ageing. A qualitative exploratory study was performed using semi-structured interviews. The sample comprised 15 informal caregivers who provided intensive care for patients with chronic respiratory failure for more than six months. They were recruited while accompanying the patients on their examination for chronic respiratory failure in Special Hospital for Pulmonary Disease in Zagreb between January 2020 and November 2020. Semi-structured interviews were used with informal caregivers, and interview transcripts were analysed by the inductive thematic analysis method. Similar codes were organised into categories, and categories were grouped into themes. Two themes were identified in the domain of physical health relating to informal caregiving activities and inadequate treatment of their difficulties, three themes were in the domain of mental health relating to satisfaction with the recipient of care and feelings, and two themes were in the domain of social life, relating to social isolation and social support. Informal caregivers of patients with chronic respiratory failure experience a negative impact on the factors that contribute to the successful ageing of informal caregivers. The results of our research suggest that caregivers need support in maintaining their own health and social inclusion. According to the data on informal care collected through the European Quality of Life Survey among close to 37,000 people from 33 countries, it is obvious that a lot of people identify themselves as informal caregivers. For example, as much as 34% of the population in Greece, 30% in Belgium, 10% in Austria, Bulgaria, Ireland, and 15% in Slovenia care for disabled relatives, neighbours, or friends at least once a week, There is no data for Croatia . It is iConsidering the fact that the incidence and prevalence of chronic diseases are increasing and that individuals prefer being cared for at home, the need for informal care is expected to grow in the future . This isLack of family and social support, and insufficient coping skills for everyday challenges of care, are among the most important predictors of informal caregiver burden. Overburdened informal caregivers are at a high risk of developing health impairments. This means that, if they disregard their own health to focus on the health and support of the person they are caring for, caregivers’ health may worsen to the point that they are no longer able to perform the caring duty ,16,17. OCaregivers of patients with severe symptoms and more functional disabilities, especially during exacerbation of the disease, perceived that they had poorer physical and mental health-related quality of life ,20. HencThe study was conducted from January to November 2020. The inclusion criteria were providers of informal care for people with chronic respiratory failure, who used some kind of respiratory support for more than 6 months (20+ h/week), self-identification as primary informal caregivers, with no financial compensation for care (except parents who receive 500 euros per month). The exclusion criteria were the provision of informal care to a person who has another unrelated illness that requires care, and receiving compensation/salary for providing care. During patient follow-up examinations for chronic respiratory failure in the Special Hospital for Pulmonary Disease, informal caregivers who met the criteria were asked to participate in this qualitative study.Informal care included assistance for respiratory patients in activities of daily living  and conducting medical interventions . Ethics approval was granted by the Special Hospital for Pulmonary Disease Ethics Committee (No. 3000/2019). Participants provided written informed consent. Likewise, researchers followed all recommendations of the Helsinki Declaration.We conducted 15 semi-structured interviews with informal caregivers. Data saturation was achieved by the 15th interview. The interview questions were developed after literature research and with suggestions from the focus group of experts relating to the research topic . The focEvery participant had a personal code to ensure absolute anonymity and to follow all ethical considerations. The further process of data analysis excluded participants’ personal data. We digitally taped the interviews and transcribed the recordings verbatim, assigning each interview a unique identifier. We completed an inductive thematic analysis of the transcripts by three researchers (triangulation), beginning after the first interview and using an open coding process . The goaThe study sample comprised 15 informal caregivers of chronic respiratory failure patients. Eight of the patients used long-term oxygen therapy, four used non-invasive mechanical ventilation and oxygen therapy, and three used invasive mechanical ventilation as respiratory support. The average age of the informal caregivers was 57 (57.11 ± 11.63 years), and the other sociodemographic characteristics of the participants are presented in The average duration of the semi-structured interviews was 28 min. An inductive thematic analysis of the interview data resulted in 7 themes, 20 categories, and 70 codes .“Apart from not moving enough, I also eat more. Especially in the last year, I have felt pain in my back, shoulders, and arms more often. (Name withheld) weighs about 13 kg, and it is usually in my arms because it makes it easier to relax.” (Caregiver 1).In the first theme , caregivers assessed their own physical health and noted that they usually were not satisfied with their health conditions. They also reported a lack of free time for physical activity and improper diet as problems. “I’m sure that I’m not well. But I can’t visit my physician. Not even a gynecologist. Imagine I have no one to leave a sick child to. The only doctors I see are hers. So I really don’t know if I have a disease or not. But my whole body often hurts” (Caregiver 2).In the second theme , caregivers reported that, besides not having enough time to engage in physical activity, they also lacked time for their own medical examinations and treatments. They also reported changes in their health status since they took on the role of caregivers, such as discovering new diagnoses, musculoskeletal pain, and weight oscillations. I associate some of these changes, such as pain in the head and neck, with a change in lifestyle, which used to be much more active. And there is also tension. Yes, I feel that tension in my head and neck” (Caregiver 3).Participants noted, in particular, problems with gastritis, breathing difficulties, headache, sleep disorders, and fatigue, and it is well known that those physical problems are related to psychological problems. ““There are days when I think I will not be able to continue. That I will tell my husband and the children that I can’t do it anymore. I’m telling you, I’m tired. And then I look at him and I feel sorry for him. I’m so sorry for him. I don’t know who would take better care of him than I do...“ (Caregiver 4).In the third theme (experiencing the role of a caregiver), they described how they coped with the role of a caregiver. Sometimes, they feel a heavy burden due to the role of being an informal caregiver and feel that they cannot do it anymore, but because of compassion and a sense of duty, they continue to take care of a sick family member. “I think I’m constantly tense. I don’t know what it’s like not to be tense! I’m definitely tenser than before. On the one hand, I am more nervous because I know that (name withheld) depends on me the most and I often don’t have much time for myself, no time to sleep, let alone anything else… It’s just that now I’m more afraid for her than a year ago because she had several ugly seizures with a big drop in saturation.“ (Caregiver 5).In the fourth theme , participants described the feelings the caregiver role evoked in them. Some of them were used to the situation, but most of them felt nervous and worried about the future. “It used to bother me more, and I resented him more when he was healthy. Now, he is helpless and nailed to the house. He can be demanding at times and wants to be the center of attention all the time, but he has been like that before. What used to bother me doesn’t bother me anymore because the disease calmed him down.” (Caregiver 6).In the fifth theme (relationship with the patient), they described their relationship with the recipient of care. The quality of their relationships usually depended on the state of the relationship before the illness. The mothers of ill children were very patient and sensitive. Spouses who found their marriage harmonious tolerated the role of informal caregivers better than others. “He can’t do anything anymore. Not even talk. We get along as a patient and a nurse (laughs). It’s the only thing that connects us. My constant concern for him and his need for my help. We agree only on that”.(Caregiver 7)“As in any marriage, we sometimes argue. But I’m gentler in an argument than before my illness (laughs). We actually get along well. The disease did not manage to destroy us”.(Caregiver 8)“Our relationship is quite turbulent. Mom always has to be right and always uses the sentence: I’m seriously ill! And that’s how she always provokes a feeling of remorse in me. But I have to take care of her”.(Caregiver 9)“The son is in Germany, the daughter sometimes comes. Otherwise, I am all alone. Only people from the ambulance and the hospital.” (Caregiver 6).In the sixth theme , participants reported that they did not have social lives, except occasional socialising with family members or medical staff. Only employed caregivers sometimes had coffee with their colleagues. “No one is coming to us in this pandemic anymore. Children and grandchildren say it’s because of the pandemic. But I think that’s an excuse for them. It’s hard for them to watch Dad so helpless. I understand that.” (Caregiver 7).In the seventh theme , participants reported they were usually at home, and the only socialising they experienced was when somebody visited them, which was very rarely, and during the pandemic, it was almost non-existent. Our study aimed to investigate how informal caregivers of chronic respiratory failure patients experience providing care and how the caring role impacted successful ageing: physical and mental health and social life.According to the results of our research, informal caregivers experience problems with their physical and mental health. Usually, they suffer from musculoskeletal pain, sleep disorders, and weight oscillations. Some of them have been diagnosed with new health conditions as a result of caring for an ill family member. Our results, especially those obtained from caregivers 1, 2, and 3, are likely in line with other authors’ results ,23,24, wCaring interventions such as transfers and bathing lead to physical overburden, which includes headaches, musculoskeletal pain, obesity, and high levels of stress hormones . These dOur participants also experienced social isolation because of a lack of free time for social lives. Sometimes, care recipients can feel uneasy when signs of poor health become visible in public. If he/she does not want to be seen in such a condition, the caregiver cannot go outside, and visiting friends are not welcome . ConsideIn addition to the previous, since our participants’ average age was 57 (57.11 ± 11.63 years) and comprised mainly women, we could say that there is a link in terms of age and gender with European informal care . HoweverThe conducted study had some limitations. Participants were recruited only in one hospital, and they all lived in the capital of Croatia (Zagreb), which could mean that our sample was not representative of all caregiver populations in the country. Furthermore, the majority of our sample consisted of women. The types of caregiver recipient’s respiratory support were different , so it could possibly be expected that the caregiver’s experience is not the same if they take care of somebody who uses long-term oxygen therapy or invasive mechanical ventilation. Furthermore, there was a conceptual framework deficiency that guided the interview questions, which further benefited the data processing.Informal caregivers experience negative impacts on the factors that contribute to the successful ageing of informal caregivers of patients with chronic respiratory failure: physical and mental health and social life. Due to the demanding nature of providing intensive care, they usually do not have enough time to take care of their own health or have social lives. Caregivers’ needs for maintaining their own health are not being met effectively; they require aid and emotional support to prevent care recipient institutionalisation. In that regard, it is essential to identify informal caregivers whose physical/mental health and social life are affected by providing care and provide them with appropriate support in line with their needs.Based on the fact that we conducted a qualitative study, future ones should focus on a longitudinal approach, mainly because we did not explore the impact that arose from the caregiving role .


During the early stages of the COVID-19 pandemic, medical students were abruptly removed from clinical rotations and transitioned to virtual learning. This study investigates the impact of this shift on students’ wellbeing and preparedness for advanced training.Through qualitative research methods, including semi-structured interviews, the experiences of medical students working on the COVID-19 frontline were explored.The comprehensive findings of the study shed light on the profound emotional journey that medical students embarked upon during the relentless public health crisis. Within the chaos and overwhelming demands of the pandemic, medical students discovered a profound sense of purpose and fulfillment in their contributions to the welfare of the community. Despite the personal sacrifices they had to make, such as long hours, limited social interactions, and potentially risking their own health, students reported feelings of relief and gratitude.Tailored support systems for medical students’ wellbeing are crucial for improving healthcare delivery during crises. Medical schools should adopt a holistic curriculum approach, integrating interdisciplinary learning and prioritizing student wellbeing. Recognizing the pandemic’s impact on students and implementing targeted support measures ensures resilience and contributes to an improved healthcare system. Medical students have experienced unprecedented disruptions in their personal and professional lives during the COVID-19 pandemic . These dThe COVID-19 pandemic has accelerated the already alarming rates of burnout and other mental health challenges experienced by clinicians and trainees alike . The curA limited number of medical students had the opportunity to work on the COVID-19 frontlines . This opThere is an urgent need for a deeper understanding of students’ wellbeing, including the factors that influence it and the impact of the pandemic on it. This is particularly crucial considering the pre-existing concerns regarding the wellbeing of medical students, which have been further intensified by the pandemic . AlthougSince a recent study by Luong et al. suggested that educational adaptations and innovations implemented during the pandemic were perceived by some trainees as beneficial for fostering wellbeing , our purResearch ethics approval was obtained by the Ethics Commission of Northwest and Central Switzerland .This research followed a constructivist grounded theory (CGT) approach. CGT was chosen as the methodological approach for this qualitative study due to its ability to explore and generate theoretical insights that emerge from the data, allowing for a nuanced understanding of participants’ perspectives and experiences within the context under investigation. Given the rare circumstances of the study context and the understudied and theorized social processes such as learner wellbeing during COVID-19, this approach was also appropriate to investigate sensitive topics regarding participants’ experiences and perceptions during the pandemic.Participants were recruited via word-of-mouth through a TTC Chat Group, a private messaging group whose members comprised all medical students from the University of Basel who participated in the TTC. The interviewed participants suggested other possible interview candidates, therefore the recruitment strategy evolved into a snowball sampling approach, which allowed for the recruitment of less experienced students with little to no pre-pandemic bedside clinical training. Participants were sampled for both gender and level of training. Recruitment was stopped once theoretical sufficiency was achieved. This was operationalized as the point at which additional data failed to generate new knowledge. Hence, the data provided a sufficient description of the phenomena explored . TherefoZS interviewed all 21 participants between May and October 2020. The semi-structured interview guide was created by JK and ZS interviews were conducted in Swiss German, with selections translated into English for review by English-speaking team members. To ensure the interviews were conversational, we changed the interview language based on the participants as ZS interviewed them as a peer. The full interview guide can be find in the We followed an iterative data collection and analysis process. ZS and JK read the transcripts and developed a codebook together by open coding. Specifically, constant comparative analysis was used to compare the data across categories to identify and refine thematic patterns, both examining data across transcripts and collecting new data to enrich the evolving analysis . During Data were co-constructed between participants and researchers, meaning that, as researchers, we brought our knowledge, beliefs, and experiences into the research. The research team consisted of various members with different backgrounds and experiences, as well as expertise in medical education, qualitative research, and patient care. BB, RS, AP, AM, RB, CN, JK, and KL were all healthcare professionals involved in different aspects of medical education and patient care. The team members regularly supervised and taught medical students, emphasizing their understanding of the medical education process. Our individual pandemic-related situations  colored both the questions we asked during interviews and how we interpreted the data.Everything was cancelled. Suddenly, I did not have volleyball training twice a week or a match. I had a lot more time for myself. and I have to say that it has improved my mental health” (P15). For participants, working on the COVID-19 frontlines was a coping strategy for “having a daily structure” (P5), “being kept busy” (P20), “being able to leave the house” (P2), and “staying socially engaged” (P1). Below, we illustrate these findings with representative quotes from the participants. The following headings provide an overview of the key aspects examined in our study and each heading represents a distinct area of investigation that contributes to a comprehensive understanding of the challenges faced by medical students.Twelve female and nine male participants between the ages of 20 and 26 and in years 2–6 of medical school participated in this study. Most participants described initial fears about the impact of the pandemic on others, with some participants expressing concerns about becoming infected themselves. The work on the frontlines was both physically and mentally demanding but switching to online learning and canceling several exams lifted some of this stress. Interestingly, most medical students perceived the experiences on the frontlines as positive, and COVID-19-related disruptions were perceived by students as a relief from typical medical student agendas and responsibilities, even for those working on the frontlines: “it’s just another flu” (P16) to “an apocalyptic scenario” (P18), illustrating the uncertainty everyone was managing early on. Most participants did not realize the impact and severity of COVID-19 during the early stages of the pandemic: “I just observed the development of the coronavirus and thought to myself: ‘It is an infectious disease like the flu, which is just there, but does not do anything hazardous” (P1). Others felt concerned or even frightened about the new virus, describing: “At the beginning, I took it a lot more seriously and had a bit of this doomsday mood, so I thought: ‘Oh my God, we all have to die!”’ (P18). While most participants held either of these general views on the pandemic, they all reported distinct instances when they realized that the virus was serious, and that the pandemic would indeed impact their daily lives.The initial reactions of medical students to the pandemic ranged from “The pandemic brought rapid and unexpected disruptions that had a unique impact on the mental health and stress of medical students. They faced challenges as both members of the general public and as students. Social lives changed drastically, and educational experiences were greatly affected, with medical universities closing, exams being cancelled, and in-person lectures shifting online. These disruptions were particularly disheartening for senior medical students, making graduation feel disappointing and anti-climactic.For some participants, their wellbeing changed over time as knowledge about the virus increased. The possibility of infection was a recurrent issue for the medical students, however. Within their role in the TTC, they learned how to protect themselves through the appropriate use of personal protective equipment (PPE):“I liked that we were protected to avoid getting infected with the virus; they provided good masks, plus glasses and all sorts of things. I think hygiene was pushed a lot in the days at Preacher’s Church. The hospital hygiene staff came every day to a point where it was almost annoying” (P9).“While taking the swab, I just had a lot of trouble with these masks, they were never airtight on me. And then the air still came out to the right and left, even if I tied knots. my feeling was just: ‘I do not think I’m well protected now”’ (P7). Another participant explained, “When I made swabs the whole time, I sometimes felt that I could easily get infected, even if I took all protective measures” (P16).However, not all participants felt safe using PPE. Some students persevered with working at Preacher’s Church despite their anxiety that they might get infected: “Fear would be exaggerated, but I’ve already had a little respect. And then I just thought to myself: ‘No matter where you go, the risk of getting infected is the same or even higher than in Preacher’s Church” (P5). Instead, most medical students accepted the risk of catching the virus, viewing it as a tradeoff for having the opportunity to work, learn, and serve the community by volunteering at the TTC: “At the beginning, I had this attitude that I absolutely have to help, that I’m young and if I would catch the virus, it wouldn’t be so bad…” (P18). As one participant outlined, “There was no reason for me not to work at the Church, even if I put myself in danger. I do it for the society” (P15). Another student highlighted: “… it is not just about me and my health but also about the welfare of everyone and those who couldn’t do it for themselves.” (P4).Most students did not fear catching COVID-19 during their time at the TTC, however: I think that took the stress off a bit. I studied anyway, but never with the intensity that I usually do.” (P13). Another participant confirmed: “The pressure from the exam was pretty much off for me because the exam was only formative, and therefore, I had less stress during my studies” (P5).While medical students faced a mix of stressors during the pandemic, they also experienced relief as certain educational responsibilities were canceled or shifted online, allowing them to prioritize their wellbeing. Notably, exams were conducted virtually and had a more formative nature rather than being high-stakes assessments. One student reported, “One of the biggest challenges overall was maintaining a daily life structure. As one participant explained:“For me, the biggest challenge was somehow still finding a daily routine. Well, at first, I did not think it was that bad to always be at home; it was also a relief somehow because otherwise, there is always a lot going on. I thought to myself that I could simply cancel all appointments without a bad conscience… and then it was just more and more difficult to maintain a daily routine…” (P15).I’ve had moments once or twice when I felt alone and thought I could not meet anyone and do anything anyway, and the whole situation was still taking too long” (P1). Therefore, for many medical students, work was a unique opportunity for socialization during the lockdown: “Otherwise, you were never allowed to see people. The Preacher’s Church […] brought normality into everyday life.” (P8). The frontlines were also a place to build new relationships and to network: “I made a couple of good friends from the 6th annual course with whom I even meet for riding bikes” (P1). Participants mentioned positive social interactions and collaborations with other medical students and the supervising physicians, nurses, and military service members working at the TTC. One student reflected on the interactions with various people: “You came into contact with others quite a lot. We had lunch together, also with the soldiers, I thought that was cool too… a completely new atmosphere that came into the Preachers Church” (P12). Another participant summarized their experiences as “fun, above all you finally saw people again, also from different annual courses, and I found it interesting with the soldiers because they were people with whom I would otherwise never have had contact” (P1).Despite potential risks and added stresses, working permitted social connection to others. At the beginning of the pandemic, students felt isolated, recognizing: “Psychologically, I felt some sort of relief because if you can do something in such a crisis, it takes away the feeling of powerlessness” (P18). Doing something with purpose and structure motivated some participants to join the frontlines: “You were able to take a lot of motivation out of it because you knew that you would do something useful with your time. Somehow it often did not feel like working at all” (P11).Generally, participants reported being positively affected by working on the pandemic frontlines, interpreting it as a coping mechanism that allowed them to escape the confines of their lockdown reality. One participant reported, “The current study provides some insights into how medical students managed their health and wellbeing and which coping strategies they used to maintain these phenomena within their dual roles as learners and healthcare providers. Most participants had experienced both sides of the pandemic. On the one side, participants’ fear and uncertainty caused by the novel coronavirus and lockdowns aligned with the pandemic-related experiences of medical students in other contexts . ParticiDespite the stressors participants faced, they were also relieved and grateful for the opportunity to learn and work on the pandemic frontlines, describing their incorporation into the workforce as a positive experience that allowed them to feel useful while also serving their health and wellbeing needs. Indeed, in contrast to earlier quantitative studies reporting a decline in the mental health of medical students during the pandemic , 9, our Having more time for self-care and engaging in altruistic opportunities are known to mitigate burnout , 29. MorCan educational disruptions and innovations like the TTC have value for learner wellbeing beyond the pandemic context? Given that the burnout crisis in medicine is worsening despite decades of efforts to mitigate it, creativity is urgently needed. For instance, although service-learning opportunities are regularly offered across undergraduate medical education  they areThose who learn coping skills are significantly less likely to experience feelings of insecurity or depression . We founThe increased psychological stress experienced by clinicians and medical students can result in adverse consequences. At an individual level, it can lead to mental health issues, physical health challenges, reduced career satisfaction, academic difficulties, and compromised job performance , 36. SocWhile engaging medical students in clinical work from early on can be beneficial in returning empowerment by acting as a coping mechanism and improving mental health , some poHowever, when innovating curricula to enhance trainee wellbeing, it is also crucial to consider the potential impact on faculty wellbeing. While improving trainee wellbeing is important, the added responsibilities and burdens placed on faculty members during the implementation of new initiatives can potentially strain their own wellbeing and work-life balance. To address this, it is essential to provide adequate support, resources, and opportunities for faculty members to ensure that their wellbeing is prioritized. Collaboration and open communication between faculty and administration are key to identifying and mitigating potential challenges and barriers. By taking a comprehensive approach that considers the wellbeing of both trainees and faculty, curricular innovations can be implemented to support the overall wellbeing of the educational community .Medical schools should adopt a holistic curriculum approach that integrates interdisciplinary learning and collaboration to address the physical, emotional, and social wellbeing of students. Longitudinal support programs should be implemented to provide ongoing guidance and resources throughout their training and careers. It is crucial to promote research and evaluation to refine interventions based on feedback from students and educators. Furthermore, medical education workplaces should foster discussions supporting work-life integration and incorporate lessons from the pandemic to enhance the learning environment and student support systems. Mindfulness and self-care workshops can empower students to prioritize their wellbeing and effectively cope with stressors in their professional lives . ReflectOur study has several limitations that should be considered when interpreting the findings. Firstly, it’s important to note that our research was conducted during the first wave of the COVID-19 pandemic. Consequently, the experiences and perceptions of medical students may have evolved over time, and the applicability of our findings to later phases of the pandemic may be limited. Additionally, limitations of our study include that it exclusively presents the perspectives of medical students who willingly participated in interviews regarding their experiences within a new learning environment at the TTC. It is important to acknowledge that these findings may not encompass the views of all medical students who were part of the TTC.Furthermore, all interviews were conducted by ZS, a fellow medical student, with the intention of fostering an informal and open dialog among peers on this subject. Nevertheless, we recognize that certain participants might have chosen not to address sensitive topics during this unprecedented epidemic period, potentially impacting the comprehensiveness of our findings. Our study also took place in a Western-country context where medical students had the opportunity to work voluntarily on the COVID-19 frontlines. This circumstance may constrain the transferability of our findings to medical students in settings where such experiences were less common. We acknowledge that medical education and the pandemic’s impact on students can vary significantly across different regions and cultures. While our highly contextualized student experiences closely resemble those reported in other studies, variations in healthcare systems and pandemic responses across different regions could result in different experiences among medical students . CollectThe COVID-19 pandemic has been disruptive to medical students. This study highlights the experiences of medical students on the COVID-19 frontline regarding relief, stress, and mental health. Despite the challenges they faced, participants expressed relief and gratitude for the opportunity to work on the frontline, describing it as a positive experience that fulfilled their sense of purpose and addressed their health and wellbeing needs. The findings emphasize the need for tailored support systems, including longitudinal programs, mindfulness workshops, and open communication. Addressing these challenges is crucial for improving the wellbeing of medical students and enhancing healthcare delivery during crises.The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.The studies involving humans were approved by the Ethics Commission of Northwest and Central Switzerland . The studies were conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.JK and ZS: conceptualization, methodology, software, quirkos 2.3.1, and data curation. JK and AP: validation and writing—review and editing. JK, ZS, RS, AP, BB, and KL: formal analysis. ZS: investigation. CN and RB: resources. JK, AP, RS, and ZS: writing—original draft preparation. JK, AM, and KL: supervision. All authors have visualization, read, and agreed to the published version of the manuscript.


Specifically, we argue that colleges can aid in building mental health resilience by creating for-credit courses that teach students the skills they need to be conscious, responsible, and resilient human beings. Toward this end, we created an experiential, workshop-style, 1 unit, P/NP course, entitled “Learning Sustainable well-being” (LSW), which guides students to explore, improve, and sustain their mental health. The principles taught in this course combine the wisdoms of several disciplines, including mindfulness, psychology, neuroscience, philosophy, religion, poetry, and cinema. The following community case study reflects on the journey of our “LSW initiative,” starting from the creation of the course in 2014 to the current mission of scaling up the offering as part of an institution-wide LSW program. To this end, we describe the LSW course modules/content, our pedagogical approach, potential limitations, and then provide data demonstrating its efficacy in improving student well-being. As a final note, we present the challenges we have faced, and the lessons learned, while on this journey. We hope that presenting this community case study will facilitate the growing dialogue across colleges about creating (and perhaps requiring) courses like LSW in order to improve students’ mental health and resilience in the context of other colliding crises.Our society is facing an unprecedented mental health crisis, with nearly one in two people being affected by mental health issues over their lifespan. This trend is especially noticeable among college students, who undergo significant shifts in social, familial, and academic responsibilities. Exacerbating the mental health crisis is the fact that students are facing other societal crises . And, in a reciprocal fashion, students experiencing poor mental health are less likely to feel resilient enough to tackle these other crises. In response to these colliding societal crises, we need a comprehensive solution that goes beyond the current models of college mental health services. We propose an alternative  Additionally, 50% would like help with their mental health, whereas only 38% believe they are currently flourishing  who do not consider themselves in need of mental health services and/or do not realize the benefits of partaking in practices that improve well-being. These students often report feeling that their problems are “not severe enough” to seek mental health services  or the fear of being labeled (or thinking of themselves) as having a mental “disorder.” This can be particularly salient for underrepresented students [see  as well as indirect exposure through media reports, elevates risk of depressive, anxious, and posttraumatic stress symptoms  [see  [see , 22 for ce) [see . As an ece) [see .different type of resource for student mental health, which is integrated within their (very familiar) college experience of enrolling in courses. Specifically, we argue that colleges should offer for-credit “sustainable well-being” courses, where students learn the skills they need to be conscious, responsible, and resilient human beings. This for-credit course approach targeting mental well-being overcomes many of the limitations of the existing mental health services (outlined above), as well as providing additional benefits. First (and most importantly), well-being courses take a preventative mental health approach; rather than waiting for situations to reach a point where they are overwhelming, students can learn the skills to prevent those situations from escalating. Second, well-being courses can reach many students, as well as a diverse range of students. This includes students who: (1) currently feel that they are not facing challenging situations, (2) believe their problems are not severe enough to seek mental health services, (3) belong to minority groups that are typically underserved by mental health services. As an added benefit, taking a well-being course along with peers is likely to lower the stigmatization of mental health issues, as students get to see that almost everyone suffers from time to time. Third, because well-being courses are able to reach many students at once, the likely long-term consequence will be to lower the burden on student counseling centers, with the added benefit of being cost-effective for the institution. Finally, because these well-being courses are taught by professors, connection and community is built between professors and students, which will likely enhance the campus culture.In this paper, we propose a 2.intimate learning environment, in contrast to most of their other courses where the large enrollments (300–400 students) can be de-personalizing and overwhelming. In 2014, the first author  created a freshman seminar, entitled “Learning Sustainable Well-being” (LSW), taught in an experiential, work-shop style format, with the goal of teaching students how to build healthy relationships with oneself and others.To pave the path for academia to address colliding crises through for-credit course offerings, it is worthwhile to start by providing a bit of history about this journey at our own institution: the University of California, San Diego (UCSD). In 2003, the University of California system adopted a freshman seminar program, in which faculty are incentivized  to teach a small (20-person), low workload , fun/engaging course on any topic to incoming freshman. The program, which is now popular on colleges across the country, was created in response to a growing student need to experience a more below). In addition, many students report spreading the lessons from the course to their roommates and friends, which enhanced connections and improved campus culture.After receiving feedback from many students that this was the most important course they had ever taken, it became clear that this course had the potential to change lives. In response to this, in 2019, the first author started a grass roots “LSW initiative” at UCSD, with the goal of expanding the LSW offering to more students. As such, the course was expanded to accommodate 100 students across all year levels and bring in four to five undergraduates (who had previously taken the course) to assist in facilitation of the exercises. . In 2021, the second author  joined the LSW initiative, teaching her own section of the course as she and the first author worked together to improve the curriculum. Survey data collected since 2019 provides evidence that the course improves well-being, and testimonials reveal themes that emerged after taking the course . It is our hope that compensation will come from the institution, as is the case for freshman seminars, although we recognize the potential need to apply for outside funding. Recruiting professors from other departments is not only necessary to expand the course beyond our psychology department, but it also allows the teaching of the curriculum through other lenses, e.g., whereas psychologists might teach about anxiety in terms of the body’s fight or flight mechanisms, historians might reference time periods where a society was challenged with, and had to overcome, disasters .Given the impact of the LSW course, it is now our long-term goal to create an official, and integrated, LSW Second, we plan for the LSW program to provide a series of course offerings, each focusing on a certain aspect of the human experience (and being subtitled accordingly). The current LSW course taught by Dobkins/Dickenson is subtitled: “Compassion for Self and Others,” as it is designed to help students explore, improve, and sustain their relationship with self and others. Next, the plan is to develop a course that helps students improve their relationship with the environment, with a particular emphasis on the climate crisis. Such efforts are currently underway at our college, spearheaded by Dr. Adam Aron. In sum, in response to the growing mental health crisis and the impact of other societal crises, we need a comprehensive solution; an LSW program that provides experiential learning on compassion and mental well-being, as well as courses on other colliding crises, for example: climate change, racial sensitivity, health disparities, or any other challenge facing society. Below, we discuss the elements of the current LSW course, which is focused exclusively on enhancing well-being through compassion for self and others.3.Below we provide information about A) the LSW course itself ; B) potential limitations of the course; and C) data showing its efficacy in improving well-being.3.1.3.1.1.The principles taught in the current “LSW: Compassion for Self and Others” course combine the wisdoms of several disciplines, including mindfulness, psychology, neuroscience, philosophy, religion, poetry, and cinema, which are drawn from a large time span (500 BC to the present day). Each week, there is a short lecture on a given topic, combined with workshop-style exercises. The exercises include: (1) private reflection; (2) group discussion; (3) didactic discourse between the instructor and students; and (4) partnering up (students taking turns facilitating each other on an exercise). After each class, students are sent follow-up announcements with additional resources such as podcasts, blogs, and vlogs. Passing the course requires simply (1) attending the course in person ; (2) submitting a weekly reflection essay describing what they got most out of the class for that week; and (3) a final reflection video summarizing their overall experience in the course.3.1.2.demonstrative fashion, with the instructor “acting” out vignettes of human life, from own or others’ lived experiences. Here, the word “demonstrative” is meant to have two different, but related, meanings. In the conventional sense, demonstrative means to openly show one’s emotions, with the effect that the instructor self-discloses in front of the students . In a less conventional sense, the word demonstrative refers to the act of demonstrating, with the goal of others then being able to mimic the process, much like a yoga teacher demonstrating a pose for participants to follow.The course was designed with the philosophy that students learn best through demonstrations. As such, the course was designed to be taught in a 3.1.3.The course has 10 modules (each 80 min), one for each week of the quarter. This translates to 13.33 h of class time. In addition, weekly reflections (approximately 15 min/week) and optional material for students (approximately 15 min/week) may add another 5 h of outside class time over the quarter. For each module, we provide a brief outline of the concepts taught, and one or two examples of in-class exercises.Week 1: Practicing Psychological Well-being: Insights from Eastern and Western Philosophies.Concepts:How humans evolved into beings who suffer psychologicallyPractices/wisdoms for alleviating suffering, based on both Eastern and Western approachesExercises:“Share your Voice”—Randomly pop up and say “why I am taking this course”“Wiggle it Out”—Leave the class dancing to musicPART 1: SELF-COMPASSION: RELATIONSHIP WITH SELF.Week 2: Exploration of the Self, and How to Live a Life with Heart.Concepts:Historical perspective of the “Self” from philosophers, old and new, Gaining awareness of negative self-talk, and changing your relationship to itLearning to honor the layers of self, from the core (innermost) to the persona (outermost) layerBehaving in alignment with core values and following a path with heartLearning to succeed means learning from, and being okay with, your failuresExercises:“Mindfulness Meditation”—Practice two different types of meditation, and write down what you heard your mind say“Core Values Journaling”—Write down your core values, and notice what aspects of persona you are attached toWeek 3: Accepting All of Your Personality Traits: the Good, the Bad and the Ugly.Concepts:Connecting to our highest selves  while learning to forgive our lowest selves The shadow side of humans (from Carl Jung); a result of our creatureliness (from Sigmund Freud) and a need to make oneself important in the uncertainty of death (from Soren Kierkegaard)How to understand, and be gentle with, the shadow side of yourself, so that it does not lead to hurtful behaviorsExercises:“Self-Love Meditation”—Holding oneself in the highest positive regard (from Carl Rogers)think it’s serving you?“Diffuse and Understand Negative Traits”—How is your negative trait a gift, or how does it Week 4: Building Emotional Resilience by Challenging Your Thoughts and Changing Behaviors.Concepts:What is emotional resilience? Perspectives from Mindfulness, Positive Psychology and Cognitive TherapyLearning to question what your “gremlins” are saying, and how to talk to your anxietyHow to stop pretending and get in touch with the truth inside yourselfExercises:“I Cannot Mind-Read”—Journal about a challenging time when you assumed you knew what someone was thinking/intending.“Discover the Raw Truth”—Go from the complicated story of something that troubles you to a one-line statement of the basic thought or emotion underlying it Week 5: Building Emotional Resilience by Accepting All of Your Emotions.Concepts:Learning to notice, allow and accept, emotions …. in the body (from Tara Brach)Distinguishing unhealthy vs. healthy negative emotions (from Albert Ellis)Exercises:“Body Scan” (Yoga Nidra)—A meditation on body parts.“RAIN”—Recognize, Allow, Investigate in a Non-judgmental and Nurturing way. Meditating on joy and pain in the body (from Tara Brach)COMPASSION FOR OTHERS: RELATIONSHIP WITH OTHERS.Week 6: Compassion for Others alongside Healthy Boundaries.Concepts:“Being” with others, without trying to fix or change them Seeing the ways we separate from others through judgments, comparisons, and assumptionsSetting healthy boundaries with others—you are not a mind reader, it’s not your job to fix people, everyone has their own realityExercises:“Just Like Me Meditation”—This person wishes to be happy, just like mereally count?“Are We Really That Different?” Think of a negative trait you do not like in others. What defense would you come up with to convince someone that—even though you might have this trait “a little bit”—it does not Week 7: Putting Compassion for Others into Practice.Concepts:Shifting from judgment of, to compassion for, othersLearning to see the “bully” as someone who needs help, not punishment (from Thích Nhất Hạnh)How to not take things personallyExercises:“Eye Contact Exercise”—a joint meditation with another“Shifting from Judgment to Compassion”- Tell a story about someone who did something you did not like. First, from a position of judgment, then from a position of compassion (not pity) because you can relate to this person’s behavior.Week 8: Approaching Conflict with Others from a “Needs” Perspective.Concepts:Communicating needs without blaming others Learning to listen without defensivenessShifting out of victim modeExercises:“Rumi Meditation”—Out beyond ideas of wrongdoing and rightdoing, there is a field, I will meet you there.feel a certain way.“Knowing your Needs.” How can you ask for a need to be met (a) without labeling/making assumptions about the other person; and (b) without asking the other person to Week 9: Taking Responsibility for Conflict with Others.Concepts:Taking responsibility for contribution to a conflict, no matter how smallHow to apologize and mean it!How to get honest with yourself about why another person triggers youExercises:“Shifting from Blame to Responsibility”- Tell a story about someone who you are having conflict with. First, from a position of blame, then from a position of taking responsibility (without putting yourself in the “doghouse”)“What is Actually Bothering You?”—When another person’s behavior has upset you, ask yourself (a) what story do you have about its significance? and (b) what are your actual concerns?Week 10: Summary, Tips for Practicing.Exercises:• Participants come up and share their experiences and breakthroughs3.1.4.disorders, acute concerns, or traumatic events, as these situations typically require a therapeutic approach. As such, if they are needed, students must be provided the resources on campus that provide such therapeutic assistance.Due to the nature of the LSW course, there is potential concern that students might enroll believing that the course will “fix their problems.” It is important to make clear to students (when they first enroll and throughout) that the course is not about fixing any specific problem, but rather, about learning a set of skills that can be applied to challenging situations, current and future. More specifically, the LSW course is not meant to address mental health 3.2.n = 6,051) show that when asked “how interested would you be in taking a well-being class if it counted toward your college requirements,” over 90% of students reported being interested, with the mode response being “extremely interested.”Beginning in 2019, we started collecting data to (1) assess students’ need for an LSW course and (2) investigate whether students in the LSW course improve on several self-report measures of well-being. With regard to needs assessment, data collected across a wide swath of students who have not taken LSW . However, because student well-being can change between quarters, it is important to have a control group as a comparison. Ideally, this control group would be a “wait-list” control, comprised of people who have signed up for the course, but are put on a wait-list to take the course later. This was not possible because, although the current LSW course always fills to capacity  with a wait-list, the number of students on the wait-list is typically small (15) because most students do not continue to add their name to a wait-list once that list is more than 25% of the course maximum. Instead, we took a different approach for recruiting control samples: other professors in our department who are teaching a psychology course in the same quarter as LSW were approached to recruit their students as a control sample. For those recruited students to be included in our control sample, they had to respond positively to a question that asks whether they would be interested in taking a well-being course at UCSD (as well as respond negatively to having previously taken LSW), and in this way, the control sample was matched in “interest in taking a well-being class” to the LSW sample.With regard to improvements in well-being as a result of taking the LSW course, we collected measures right before the start of the quarter in which they took the course (referred to as the “pre-course” data) and then again at the beginning of the following quarter (referred to as the “post-course” data). Note that providing pre-course data was a requirement of the LSW course, whereas providing post-course data was voluntary yet incentivized with course credit in whatever course they were taking the following quarter . Collecting both the pre- and post-course data at the To date, we have pre- and post-course data from 133 LSW students and 222 control students, collected over six academic quarters between 2019 and 2022. The sample was largely skewed toward women (80%), as is typically the case in Psychology departments. In addition, in three of the six quarters, the course was taught over Zoom, instead of in-person, because of COVID-19, with the result that 63.1% of the sample experienced the course in-person. In testing the effectiveness of the course on well-being, we additionally asked whether these demographics  affected the findings.3.2.1.see above). We also collected 30 testimonials from LSW students who later were chosen to be class facilitators. These responses were qualitatively coded (by two raters) and fell into two main themes: Improvements  and Thoughts on the Course . A full list of themes that appeared in >30% of the sample is provided in Improvements, students reported increased feelings of empowerment (70%); introspection of their emotional reaction (60%); and 53% intended to continue practicing the material outside of class. For Thoughts on the Course, students felt that the course material was highly applicable in everyday life (80%); that the course allowed for meaningful interactions with peers and the professor (70%); and that this class was overall extremely impactful (63%).In post-course data, when LSW participants were asked about their overall experience, 97% percent said they either agreed or strongly agreed that the LSW course improved their well-being , with effective sizes ranging from small  to large  really struggle with—which is how to be compassionate in difficult situations. We were therefore happy to see that the Compassion for Others subscale of the “Dobkins” measure—which focuses on compassion for difficult people/situations, showed significant (p < 0.001) and moderate (effect size = 0.56) improvement  and Modality , for each of the well-being measures  and found no significant interactions . Although these null findings suggest that the beneficial effects of taking the LSW course did not vary across gender and modality, they should be interpreted with caution as our sample size is likely too small to observe interactions. This is particularly important for the Modality question; if it truly is the case that Zoom teaching is as effective as in-person, this could have important implications regarding scalability.In a final analysis, we asked whether any of the observed effects of group (LSW vs. controls) differed by gender or the modality in which the class was taught. To this end, we conducted two-way ANOVAs for Gender  courses that provide the needed skills. As the Dalai Lama pointed out in his 2017 commencement speech at UC San Diego, colleges were once religious institutions, which provided bottom-up approach, recruiting other faculty to teach these LSW classes until there is a critical mass on campus, or a top-down approach, convincing the administration to oversee, and encourage participation in, an official LSW “program”? The top-down approach inevitably means meeting with top administrators, not only to get their “buy in,” but to figure out what administrative policy needs to change to make things happen. In our experience, we have found that the top-down and bottom-up approaches go hand in hand, which we experienced as follows.The question we have grappled with is how best to create and scale up these LSW courses on college campuses. Should we take a see above) and (2) a sufficient number of faculty could be recruited to teach an LSW course.In the Spring of 2019, we met with the Chancellor (and other top administrators) asking for their support of an official LSW program at our university. We argued that all students, even those who are not currently experiencing severe mental health concerns, are in need of a course that teaches them to have compassion for self and others. We also reported that the current LSW course was filling to capacity, with a waitlist, and that students were reporting that the course was “changing their lives.” Although administrators were sympathetic, they were clearly not signing on the bottom line. This seemed baffling at first; why would not the administration adopt this “no-brainer” idea? Over the next few years, it started to become clear that what might win them over would be to provide evidence that (1) the course improves student well-being . We thought this “adopt our curriculum” approach would be best as it would ensure some quality assurance as well as make it easier to measure the efficacy of the course in improving well-being across a diverse sample of faculty. Because we already had two of us (the first and second authors) in the Psychology department successfully teaching the LSW course, in 2021, we started asking our psychology colleagues if they would join in. Although many were sympathetic to our cause, we were met with two obstacles. second obstacle we experienced concerns teaching load; many faculty reported that they did not have enough time in their schedule to take on another class. To address this obstacle, we spent a lot of time with departmental and university-level administrators to discuss potential solutions: Could the class be converted to a 2- or 4-unit (rather than the current 1-unit) class? How best could the course fulfill student requirements for graduating? Could the experiential spirit of the course be maintained if it were changed to a 2- or 4-unit course, which would then require a letter grade? Could faculty teach the LSW course by being offered release from another course? After much deliberation, we decided it best to keep the LSW course as a 1-unit P/NP, taught above current teaching load and compensated with $1 K (that can be applied toward the faculty’s research funds).A other departments on campus. In Winter 2023, we reached out to the chairs of several departments on campus, asking if they would circulate a recruitment letter to their faculty. To our pleasant surprise, all the chairs agreed, and within a few weeks, we had a coalition of 6 faculty interested in getting trained in and teaching the LSW course . All these faculty members immediately recognized the need for such courses at our university, which was quite encouraging.Once these obstacles seemed sufficiently resolved, we then launched our bottom-up campaign to recruit faculty from Now that we have a growing coalition of faculty who are interested in teaching LSW, as well data showing the efficacy of the LSW course, we are resuming discussions with the administration, in the hope that all of our bottom-up achievements will be met with top-down endorsement of an official “LSW program.” This stamp of approval from the administration will make it much easier to: (1) get the necessary resources to recruit LSW faculty, (2) expedite the approval of these LSW courses in different departments, (3) document the implementation of the LSW course across departments , (4) fund the collection and analysis of data investigating the efficacy of the LSW course in different departments, and (5) bridge the cultural gap between faculty and students, thereby building campus community.On a final note, we end with a call to action for all college administrators. Institutions like to position themselves as preparing young people for the future, however, they are currently neglecting some of the most crucial tools needed to be human: empathy, compassion, resilience, even listening. To make matters worse, we are sending them out into a world of colliding crises, which they are not equipped to tackle. The idea of for-credit LSW courses offers a creative solution, and it is up to the administration to acknowledge this, to act as if we are in crisis mode. Because we are.The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.The studies involving human participants were reviewed and approved by the University of California, San Diego Office of IRB Administration. The patients/participants provided their written informed consent to participate in this study.KD conceived of the idea. KD, JD, and DL wrote the manuscript together. KD and TB analyzed the quantitative data. All authors contributed to the article and approved the submitted version.T Denny Sanford Institute for Empathy and Compassion under the 1-year pilot study to scale up the LSW course.This work was supported by the The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.