Original scientific article Received on 27 May 2025, accepted on 18 August 2025 doi: 10.51741/sd.2025.64.1-2.111-131 Bojan Sosic, Esmina Avdibegovic, Nejra Tinjic, Vahid Djulovic Challenges and perspectives of user-led initiatives in post-conflict and transitional communities: experiences from Bosnia and Herzegovina Following the end of the war in Bosnia and Herzegovina (1992-1995), the process of reforming mental health services began, focusing on the development of community mental health centers as the backbone of deinstitutionalized care for individuals with mental health issues. During this period, several user associations were established with the aim of amplifying the voice of service users in shaping the conditions for their improved status and full participation in society. The aim of this paper was to analyse challenges and perspectives in the development of the user-led organizations and user-led initiatives in Bosnia and Herzegovina as a post-conflict and transitional community. The authors of this paper attempted to answer exactly how and to what extent post-conflict and transitional circumstances provide an opportunity for the development of the user-led initiatives. In searching for the answer, the case study method of a user-led organization with a twenty-five years experience was used. The findings show that in using opportunities and coping with challenges the key lies in the independence, mutual assistance skills, democratic management of the organization, involvement of all the users in the development and implementation of initiatives, openness to cooperation, inclusion in the social network and willingness to learn and share knowledge. Key words: mental health, deinstitutionalisation, stigma, user associations, community mental health. Bojan Sosic works at the Board for Neurological and Psychiatric Research of the Department of Medical Sciences of the Academy of Sciences and Arts of Bosnia and Herzegovina. Contact: bojansosic@gmail.com. Esmina Avdibegovic, professor emeritus of the Faculty of Medicine, University of Tuzla, Tuzla, Bosnia and Herzegovina. Contact: esminaavdibegovic@gmail.com. Nejra Tinjic is a psychologist at the Association for Mutual Assistance in Mental Distress "Fenix" Tuzla, Bosnia and Herzegovina. Contact: nejra@tkfenix.ba. Vahid Djulovic is a user and leader of the Association for Mutual Assistance in Mental Distress "Fenix" Tuzla, Bosnia and Herzegovina. Contact: info@tkfenix.ba. Izzivi in perspektive uporabniško vodenih iniciativ v pokonfliktnih in tranzicijskih skupnostih: izkušnje iz Bosne in Hercegovine Po koncu vojne v Bosni in Hercegovini (1992-1995) se je začel proces reformiranja služb za duševno zdravje, ki se je osredotočil na razvoj centrov za duševno zdravje v skupnosti kot hrbtenice dezinstitucionalizirane oskrbe za posameznike z duševnimi težavami. V tem obdobju je bilo ustanovljenih več uporabniških združenj, katerih cilj je bil okrepiti glas uporabnikov storitev pri oblikovanju razmer za izboljšanje njihovega položaja in polno sodelovanje v družbi. Cilj članka je analizirati izzive in perspektive pri razvoju uporabniško vodenih organizacij in pobud v Bosni in Hercegovini kot pokonfliktni in tranzicijski skupnosti. Avtorji poskušajo odgovoriti na vprašanji, kako in v kakšnem obsegu pokonfliktne in tranzicijske razmere ponujajo priložnost za razvoj uporabniško vodenih pobud. Pri iskanju odgovora je bila uporabljena metoda študije primera uporabniško vodene organizacije s 25-letnimi izkušnjami. Ugotovitve kažejo, da so ključni pri izkoriščanju priložnosti in spopadanju z izzivi neodvisnost, spretnosti medsebojne pomoči, demokratično upravljanje organizacije, vključevanju vseh uporabnikov v razvoj in izvaja- on nje pobud, odprtost za sodelovanje, vključevanje v socialno mrežo ter pripravljenost za učenje in prenos znanja. J^ Ključne besede: duševno zdravje, dezinstitucionaliazacija, stigma, uporabniška združenja, skupnostno dušev- h no zdravje. < how they would like to have self-help groups that they could run themselves. The idea was discussed at length, steps toward its realization were considered, and in parallel, the hospital staff began educating patients about self-help and mutual support. Over time, the number of interested patients grew, and within the group, the idea emerged to form an association, symbolically named "Feniks" (Udruzenje za uzajemnu pomoc u dusevnoj nevolji "Feniks", n.d.). One member immediately created a logo, while others engaged in exploring how to register the association. In 2000, they held the founding assembly in the premises of the Day Hospital and received approval from hospital management to base the association on hospital grounds. A room was made available to them to use. However, they soon faced the challenge that the room could not be used freely; their entry, stay, and departure times had to be recorded. This was one of their first challenges. They had an association, but not the freedom to use their time within it as they saw fit. This led them to reach out to the local community and city administration. Through HealthNet International, they connected with Robert Hayward of The Hamlet Trust (UK) and Igor Sprajcer from "Altra" in Slovenia. Their visit brought valuable insights into how to operate independently from a health institution. Continued communication with the city administration yielded results: the city provided space in the center, away from the hospital. Due to war-related damage, the premises were in ruins. With local community support, renovation was carried out with help from the adult prison administration in Tuzla. Prisoners and association members jointly renovated the space. One year after its founding, "Feniks" moved into the new premises. Now they could come and go as they pleased, engage in preferred activities, and use items like glass cups, bottles, cutlery, scissors - items banned in psychiatric settings. They assumed responsibility for themselves and each other. Mutual trust emerged. They felt human - like everyone else. This was a good example of a joint action, freedom of action and creativity derived from a strengths-based approach to helping. In this approach, individuals and groups who need support or who have difficulties are considered to have the capacity and abilities within their social network to achieve the necessary change (Folgheraiter and Rainer, 2017). Following this significant initial success, new challenges arose. Operating required funds, thus raising the question of financial sustainability. The members had no prior experience or skills in fundraising. Professional supporters encouraged them to tackle problems independently, with backing only if insurmountable obstacles emerged. One activity requiring no funds was media engagement - though it demanded courage. Initially, members appeared in the media accompanied by Day Hospital staff. Eventually, they presented independently. With a local radio production company, they hosted a weekly show led by a member. They fought stigma and promoted mental health through media and direct contact with journalists - without funding. This empowered them. They began lobbying to improve their status, particularly access to treatment. At the time, medications required co-payment, leading many to discontinue treatment and face relapse or rehospitalization. Informed by professionals that health laws exempted them from co-payment, they campaigned and lobbied politicians. They were heard in the Tuzla Canton Assembly and gained favorable outcomes. After three years operating without financial support, the association faced a crisis. Membership dwindled - some lacked travel funds, others wished for refreshments or excursions. At one point, only three members remained, one of whom used the premises for sleeping. Their persistence and renewed cooperation with The Hamlet Trust and other associations in Bosnia and Herzegovina helped them survive. A Hamlet Trust-supported research project on users' status in Tuzla Canton gave them new motivation. Former and new members returned, enabling training, networking, and fundraising skill development. They accepted various tasks - landscaping parks, street cleaning, rehabilitating returnee areas and cemeteries. Through such work, they earned enough to purchase a van, gardening tools, woodworking machines, and equip carpentry and art workshops. They began organizing excursions throughout Bosnia and Herzegovina. Although they did not speak English, they accepted training invitations abroad and relied on participants from former Yugoslav republics for translation. During this period, they learned to use computers, underwent IT training, and received their first computers. Throughout, "Feniks" strengthened its self-help group work. A pivotal resource was Prof. Tanja Lamovec's book Psychosocial Assistance in Mental Crisis (Lamovec, 2005), which she generously allowed "Feniks" to translate and publish in Bosnian. This helped them understand how to develop user associations, organize and maintain self-help groups, advocate, combat stigma and discrimination, and fight for human rights. Ideas and practical advice on institutional crisis coping as provided by Professor Lamovec guided "Feniks" members in overcoming obstacles. A second major milestone was reached in 2007, when the City of Tuzla granted "Feniks" the use of a house for the duration of 30 years. This house remains their base of operations. Distancing themselves physically and symbolically from psychiatric institutions and professionals was a significant challenge and bold step. It aimed to demonstrate that people with mental illness, with minimal support, are capable of responsibility for themselves and others and can contribute to societal change. The benefits - both individual and social - are significant. For example, several "Feniks" members, previously hospitalized for over a decade, through meaningful engagement with "Feniks," became key local actors in combating stigma and discrimination. The way that they did it was through sharing personal experience and knowledge of living with mental disorders, providing peer support, leading groups for self-help, activism and working on strengthening user assotiations. 122 T3 > < Besides the aforementioned, it is significant to mention a user-led initiative in the field of research. The first user-initiated and conducted research on the needs and the quality of life of persons with mental disabilities in Tuzla Canton was conducted in 2003. This research was supported by The Hamlet Trust organization, which initiated in Bosnia and Herzegovina a Pathways to Policy programme (The Hamlet Trust, n.d.2; Maglajlic Holicek and Baldwin, 2009, pp. 68-69). This study was conducted on a sample of 319 users from the Tuzla Canton. The results of this study showed that 47% of persons with mental health difficulties receive very low monthly social benefits which could not cover even the food costs. Out of the 319 respondents, only 4% were in full-time employment, while 87% of them stated that they have very little social life and they go out rarely, and 63% were dissatisfied with the support they received from local health services (The Hamlet Trust, n.d.2). The key issues faced by the participants included poverty, unemployment, loneliness, lack of social status, and dissatisfaction with local health and social services (Maglajlic Holicek and Baldwin, 2009, pp. 68-69). The results provided a foundation for developing further goals of the association, particularly concerning the improvement of the social status of persons with mental health conditions, enhancing access to health and social care services, and reducing stigma and discrimination - especially in the area of employment. The study also served as a starting point for subsequent research, focusing on topics such as access to mental health services, user satisfaction, employment opportunities for people with mental health conditions, and the specific needs of women experiencing psychosocial difficulties. The results of a still unpublished study on the specific needs of women with an experience of psychosocial difficulties conducted in 2023 on a sample of 60 women with an average age of 40, indicate that the needs and the quality of life are similar to the results of the study conducted by "Feniks" 20 years earlier. Namely, 36.7% of women in this study are married, 50% of them live with their parents and are dependent on the parental help, 53.3% have below-average monthly earnings, 16.6% of them have their legal capacity deprived, and 29.4% mentioned an experience of abuse by a family member. It is interesting that only 20% of women with psychosocial difficulties believe that they can independently manage their money and decide on with whom and where to live. Most women (70%) state that they need help in leading their lives independently, 51.7% need assistance in job search, 63.3% need support in relation to family relationships, while 58.3% have a need for safe housing. In conducting this research as well as previous research, the users faced a number of obstacles and challenges such as: 1) How to reach research participants or the target group; 2) How to establish partnerships with health and social services; 3) How to make research findings visible to both the professional community and the general public; and 4) How to fund these activities. From experience, stigma and prejudice appear to be the primary obstacles in addressing these challenges. Combating stigma Anti-stigma activities were designated as a high priority. The initial initiatives included media appearances, including a weekly radio show hosted by a member of Feniks, as well as the marking of October 10 as World Mental Health Day. Feniks has continuously organized activities around October 10, involving other non-governmental organizations, the media, health and social workers, and educational institutions. Activities have included educational workshops in schools, a mental health parade, poster displays and brochure distribution with educational content, sharing personal recovery stories, producing short videos with anti-stigma messages, and engaging with health and social workers to address stigmatizing and discriminatory behavior. From an initially member-led anti-stigma campaign without financial support, Feniks's campaign has grown into a sustained and financially supported effort. This was made possible through members' recognition of the importance of networking with other organizations and developing joint action strategies, alongside the recognition by local governing bodies of Feniks as a valuable partner in mental health promotion. Networking with other NGOs has, in itself, helped reduce stigma. Personal interactions between service users and the broader community play a crucial role in breaking down stereotypes and prejudices. To illustrate this, we provide one example: Feniks was granted the use of a house by the city in a then-peripheral and underdeveloped urban neighborhood. The area around the house was unkempt, as was the street itself. Nevertheless, residents submitted a complaint to city and health authorities demanding that the "mental patients" be removed from their street, claiming that their children were now afraid to go to school. The request was denied. Members and friends of Feniks then undertook occupational activities to clean and beautify the house's yard, making it appealing to their nearest neighbor, who invited them to improve his yard as well. Soon, other neighbors began asking for help with yard work or various other tasks. Thus, contact was established. Stereotypes were broken. Over the following years, the street where Feniks's house was located became highly populated, with the Feniks house a recognized and welcomed part of it - its entrance proudly bearing the sign: "Life has no rerun." Many people with mental disorders, such as schizophrenia, face symptoms and the consequences of their disorder on the one side, and on the other side stereotypes and prejudices stemming from misconceptions about mental illnesses on the other (Corrigan and Watson, 2002). Prejudice leads to discrimination and behavioral reactions that can be in the form of hostile behavior and harm, as stated in the previous example. Stereotypes (negative beliefs), prejudice (agreement with beliefs and negative emotional reaction) and discrimination (behavioral response to prejudice) define stigma towards people with mental difficulties. The World 124 o Health Organization (2001, p. 16) defined stigma as "a mark of shame, dis-| grace or disapproval that results in an individual being rejected, discriminat-£ ed against and excluded from participating in a number of different areas of ^ society." According to the World Health Organization (2001), social beliefs, 0 attitudes and reactions determine many aspects of mental health care. Social ¡z environment is an important factor in recovery and integration of persons £ with mental difficulties. ^ Negative social environment reinforces stigma and discrimination. Gen- o erally, the social perception of mental health problems is dominated by neg-.Q ative stereotypes. People with mental health problems are often viewed 1 through the prism of their health problems, regardless of their overall conI tribution to the society. Research suggests that the stigma of mental difficul-$ ties is a widespread and significant problem worldwide (Avdibegovic and 1 Hasanovic, 2017). ™ Corrigan and Watson (2002) emphasize protest, education, and outreach § as strategies for changing public stigma. They also state that stigma is further reduced when the general public encounters people with mental disorders who are able to keep jobs or live as good neighbors in the community. Interpersonal contact is further improved when the general public can regularly interact with people with mental difficulties as peers. In our previously described example, it was the direct interpersonal contact and good neighborly relations that contributed to changing the environment towards the members of the "Feniks" association and their integration into the local community. The day center - a place for encounters and recovery work Self-help groups, gardening, woodworking as a hobby, crafting jewelry and greeting cards, painting, shared coffee breaks, and occasional communal meal preparations formed the daily rhythm for users gathering at the Feniks house. There was a growing need to structure these activities and ensure their continuity and regularity. Occasional support from mental health professionals in the form of consultations was also needed. Students of pedagogy-psychology and social work participated as volunteers. New ideas emerged from this collaborative environment, offering solutions for improving the association's work and making it more open and attractive to new members. It appeared that establishing a day center would be a good way to structure activities and ensure their continuity. The idea's implementation was jointly considered by users and volunteers and transformed into a small pilot project. The challenge was to identify who might support the idea - which donor, and with whom to discuss it? In the local context, day centers fall under the category of social welfare services. For the social welfare system to provide financial support, certain conditions must be met - one of which is the employment of professional staff. A key problem was that Feniks had no employed professionals - in fact, no employees at all. So how could the association meet its own needs and integrate into the social welfare system while remaining independent from professional authority and maintaining its authenticity? The question was how to remain true to oneself - open, honest, autonomous, and uninfluenced - preserving the founding idea of the association while also securing necessary support. The idea centered on encounters among individuals advocating for their personal and collective rights within the context of discrimination experienced due to mental health challenges. While preserving this idea and being aware of the requirements for local government financial support, the first step toward realization was to pilot the day Center concept using donor funding in partnership with larger non-governmental organizations. Through this pilot project, the association was able to employ one professional, thereby fulfilling the primary requirement to receive financial support from local authorities for the day center. Sustaining this support involved annual reporting on fund use and submitting yearly requests for continued financing of day center activities. Discussion The mental health service user movement has been a key player in promoting user involvement in the development of services and a person-centered and recovery-oriented mental health care system in recent decades (Grim and Markstrom, 2024). Deinstitutionalization, questioning of the biomedical model of care and the legitimacy of biomedical theory, philosophical and political criticism of traditional psychiatry, and social changes created opportunities for the development of the concept of service user involvement (Millar et al., 2016). User-led organizations are groups or organizations led by the people who have a direct experience with a certain problem, situation, circumstances or difficulties. In the field of mental health, those are the people who have had or still have an experience with mental health difficulties. Those are groups or organizations established and led by the people who use their experiences as a basis for helping or supporting others. User-led organizations can be formal or informal groups that gather in order to provide mutual support or provide services that the public sector and other organization will not or cannot provide or to conduct trainings, disseminate knowledge, conduct research or activities for the promotion of mental health or campaigns for human rights and the fight against stigma. User-led organizations, as non-profit organizations, have multiple purposes. First of all, their role is characterized by the goals of providing support to members (peer support, mutual aid activities, etc.), spreading knowledge and political advocacy, which includes influencing public opinion, politics and social development (Grim and Markstrom, 2024). These organizations 126 T3 > < are often small, underfunded and often struggle to survive. They often lack the contacts and visibility in the community to attract big names, launch media campaigns and attract the attention of decision makers (National Survivor Network, 2019). In the post-conflict and transitional communities, the issue of mental health is often largely ignored by local authorities and the government of the country that is entering post-conflict reconstruction. In a large number of cases, support for the reconstruction of the country is provided by various international organizations and foundations for the purpose of rebuilding life in devastated communities such as Uganda, Afghanistan, Rwanda, Kosovo, Syria, Ukraine, etc. In the case of Bosnia and Herzegovina, various international actors participated in the reconstruction, which influenced the processes of physical reconstruction, economic and social recovery with financial and other resources. Significant international support through various projects and programs was in the reform of mental health services. In the context of post-war reconstruction, the movement of users also developed, as we stated in the introduction. Contact and exchange of experiences with users from other parts of the world and organizations advocating changes in the policy of mental health care provided opportunities and gave a perspective to strengthen the local newly established user associations. On the other hand, the collapsed social and health system, unsettled political conditions, fragmentation of society, poverty, unemployment, a large number of traumatized people, mistrust, stigmatization and other post-war circumstances represented significant obstacles. These were obstacles that had to be mastered every day in order to survive. Many of the user associations founded during the reconstruction period did not survive. What made the "Feniks" association different from other user associations in Bosnia and Herzegovina and what helped them survive? First of all, it is the establishment of autonomy and independence in their work regarding the staff of mental health services, networking with similar organizations, openness to learning from the experience of other organizations, especially in the part of financing and developing the structure of the organization. Furthermore, this group of people with mental health difficulties developed and nurtured mutual and peer support. The members acquired and developed the skills of providing peer support, first through mutual sharing of experiences and knowledge in dealing with mental health difficulties and everyday life problems. Later, they developed these skills through the exchange of experiences with other user organizations. They showed openness for meetings and enthusiasm in achieving their goals. Most of the members of this association drew their enthusiasm and strength from the experience of many years of psychiatric treatment. The activities were on a voluntary basis, and the association had no employees. In communication with the mental health services and decision-makers, they advocated, and still advocate, for the acceptance and recognition of their "experiential knowledge". 127 The skill of leading the association was also important in the survival of the association, especially in the part of using the social network, strengthening the capacity of the association, in establishing partnership and cooperation. Currently, the challenges the association is facing are how to harmonise its activities with what donors and policy makers expect from them, while remaining autonomous. Brown and Ormerod (2020) state that user-led organizations have more in common with their communities than with the statutory bodies or large non-governmental organizations providing mental health services. Understanding the specific roles that these organizations play in the field of mental health will include the representation of user-led organizations as a sector in mental health (Brown and Ormerod, 2020). Conclusion Post-conflict and transition communities in the process of reconstruction and reform simultaneously provide opportunities and are a source of numerous obstacles for the development of user-led organizations and user-led initiatives. In a way, the reconstruction of life in post-conflict communities can bring about new ideas, political changes and social actions that meet the needs of people with mental difficulties and other marginalized and socially excluded groups. The role of international organizations in these changes is crucial, especially if support programs for the development of the mental health system are included in the provision of assistance for the economic recovery as well as physical reconstruction. Abandoning the traditional psychiatric approach in mental health care, developing and strengthening community-oriented services and a recovery-oriented approach, changing mental health policy can create an environment favorable for the development of user associations and initiatives. Based on the experience of the user-led organizations presented in this paper, it seems important to emphasize that proactive organization building, independence, democracy in the management of the organization, openness to cooperation, inclusion in the social network, willingness to learn and share knowledge and experience are important factors in the development and survival of user-led organizations. 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