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J Korean Acad Psychiatr Ment Health Nurs > Volume 33(2); 2024 > Article
Kim, Kim, and Joung: Role Identities of Activists with Mental Disorders in South Korea: A Qualitative Descriptive Study

Abstract

Purpose

The psychiatric survivors movement, which represents people with mental disorders (PWMD), recognizes the autonomy of PWMD activists and emphasizes peer support and advocacy. However, in South Korea, where this movement is still in its early stages, the activities associated with it are not clearly defined. This paper aims to explore the role identities of PWMD activists and examine their significance.

Methods

We conducted one or two in-depth interviews with 12 PWMD activists to gather data. The interviews were designed to uncover the participants’ perspectives on their roles as PWMD activists and their understanding of these roles. Thematic analysis was used to identify common themes.

Results

The overall theme that emerged from the role identities of PWMD activists was “one who publicly advocates for the rights of the group while leading colleagues towards personal growth and societal change.” Within this overarching theme, three sub-themes were identified: intrapersonal, interpersonal, and socio-political aspects. In total, we identified 10 sub-themes.

Conclusion

Our findings can inform the development of various activities that support the recovery of PWMD, enabling them to assist their peers and advocate for their future interests, while also ensuring that their roles are reflected in policies.

INTRODUCTION

Mental-health services in South Korea have traditionally used medical models of treatment and rehabilitation. In recent years, the social environment in South Korea has led to increasing discrimination against people with mental disorders (PWMD), as reflected in the unequal availability of services and human rights violations [1]. In response, a rights movement based on the psychiatric survivors movement has emerged to restore the rights of PWMD and allow them to achieve independence, access self-help resources, and engage in self-determination [1]. Psychiatric survivors are people who support and empower each other as they recover from traumatic memories of suffering or oppression experienced in the traditional mental health system [2]. The psychiatric survivors movement contradicts expert-centeredness. It started with the participation of PWMD in their own treatment and has spread to encompass social rights, such as housing and employment [3]. In South Korea, it has developed in the form of peer support and advocacy activities.
Peer support activities for PWMD encourage them to draw upon their own recovery experiences and capabilities as opposed to seeking help from mental health professionals [4]. The number of relevant South Korean studies has increased since the 2000s [5,6], but the universal definition of peer-support activity remains vague [7]. Advocacy activities emphasize initiatives that give PWMD the decision-making authority to protect their consumer rights and freedoms [8]. This movement began in the United States after 1980 and has been active in South Korea since 2010 [9]. The Korean Act on the Improvement of Mental Health and the Support for Welfare Services for Mental Patients (Korean Mental Health Act) does not have a clear provision for PWMD. However, it does specify their participation in the Committee for Examination as to Legitimacy of Admission (Article 46) or Mental Health Deliberation Committee to advocate for the rights of mentally ill patients (Article 53). As such, major institutions, such as the National Mental Health Center under the Ministry of Health and Welfare, are running courses to train peer supporters.
These social activities have contributed significantly to shifting the mental disorder paradigm from a treatment model to a recovery model [10]. The initial definition of recovery-the removal of psychiatric symptoms-has gradually evolved [11]. Especially, Davidson stated that recovery should emphasize self-determination [12]. Indeed, the psychiatric survivors movement is closely related to the right to self-determination [13].
Consumer involvement with the psychiatric survivors movement is closely related to recovery [14]. Rejecting mental disorder-related stigma, developing a sense of responsibility and duty, and managing daily life through activities with colleagues aid in the recovery of PWMD [15]. Moreover, the psychiatric survivors movement seeks community integration, emphasizing the potential, capabilities, and strengths of PWMD, viewing them as competent actors who can take responsibility for their lives [16].
Based on recent articles, we refer to PWMD activists as people who engage in activism associated with having a mental disorder. Although the advantages and effects of PWMD-driven activities are emerging, discussion is limited regarding the PWMD activists who carry out these activities. Previous studies on PWMD activists have focused on personal inquiry (i.e., experiences of activities and changes in perception) [9,14,17,18]. During PWMD activities, activists interact socially with mental health professionals and fellow PWMD. In this social and interpersonal context, how PWMD activists define their roles determines not only the content and scope of the activities they perform but also their self-meaning and self-value.
In other words, how PWMD activists define their roles which can be referred to as their role identity is of major importance in terms of their sense of purpose and ontological and epistemological beliefs [19]. According to role identity theory, individuals determine what behaviors they are expected to perform (both by themselves and by others) based on their role identity [20]. Individuals also experience positive feelings when they engage in behaviors that are consistent with their role identity. That is, PWMD activists’ role identities not only determine their activities but also affect their recovery. Furthermore, the discovery of a role identity through the voices of people with psychiatric disabilities is significant because a process of defining, redefining, and overthrowing existing negative identities is required for a minority movement to begin [18].
In this study, we sought to understand how PWMD activists recognize and define their roles as activists. Specifically, this study aimed to uncover the role identities of PWMD activists based on their voices and explore their related meanings. Again, the activities of South Korean PWMD remain limited; therefore, our exploration of activists’ role identities will facilitate an understanding of their functions and identify activities that will guide increasingly positive activities in the future.

METHODS

1. Study Design

This study follows a qualitative descriptive design and adopts a thematic analysis method to comprehensively explore the role identity of PWMD activists. The main research question is “What is the role identity of PWMD activists?”

2. Participants

Participants were recruited via both purposive sampling and snowballing. Recruitment notices were posted at metropolitan organizations and community centers where PWMD were working. Potential subjects introduced others or contacted PWMD activists they knew through community activities.
The inclusion criteria were as follows: First, people aged 19~70 years were included. Second, people were included if they had been diagnosed with a DSM-5 mental disorder that was being treated while engaging in PWMD activities for over 10 hour/week in a mental-health-related institution or as a freelancer. A freelancer is someone, such as a writer or actor, who works for themselves and is not affiliated with a specific organization or company.
The purpose of this research was explained to the study candidates, and those who agreed to participate voluntarily provided written informed consent. Ultimately, we enrolled 12 PWMD activists, including 10 working in five organizations, such as the Mental Health Welfare Centre and the Centre for Mental Disability Fellow Support, and two freelancers.

3. Procedures and Materials

From January 22 to February 19, 2021, all 12 participants were individually interviewed for 90~120 min. Ten of the participants were interviewed once. Following the interviews, one additional interview was conducted with two participants who, during their communication with the researcher, determined that they needed to talk more about the role identity of PWMD activists. Each interview was scheduled for a time that suited the subject and tended to take place in quiet cafes or rooms at participants’ workplaces. All interviews were recorded using two electric recording devices.
After consideration of the principles of qualitative research and the research questions, an interview guide was developed via discussions among the research team. During each interview, open-ended probing questions were added as needed for clarification. The main questions were as follows: “Can you describe the kind of work that PWMD activists usually do?” “Can you describe your typical daily and weekly routine?” “Tell me about your relationships with the people you meet through your activities” “What events (situations) made you think ‘I’m doing this as a PWMD activist’?” “What changes in your role and position, economic status, and mental health systems have you experienced since you first started working as a PWMD activist?” “What is the difference between your initial experience as a PWMD activist and your current experience?” “Describe three of the most challenging and best things about being a PWMD activist.”

4. Analytical Principles and Methods

The data were analyzed using thematic analysis, which extracts concepts from descriptions of a phenomenon based on transcripts and is inductively derived into common themes by considering the context [21]. Braun and Clarke’s (2006) six-step thematic analysis was conducted as follows. First, the researchers listened to the recordings and read the transcripts repeatedly to record initial thoughts for analysis. Second, the frame of initial analysis was established by focusing on the manuscripts of the participants with the longest careers. Third, tentative categories were determined by employing the initial analytical framework to extract relevant content from the data. Fourth, the relevance of the tentatively determined categories and all data were checked, including the meaning of each topic created by focusing on the contents of each category, and each topic was named. Fifth, the contents were analyzed by topic and described; representative quotations were then extracted. Sixth, after feedback was received from the 12 participants, each topic was confirmed [21].

5. Quality of the Study

Morrow (2005) and Sandelowski (1986) identified four concepts that are important in terms of the trustworthiness of qualitative research: credibility, transferability, auditability, and confirmability. Data were collected and analyzed with consideration given to these criteria [22,23].
First, credibility relates to the accuracy and truthfulness of the findings described by a participant. It was ensured by having each interview commence with open-ended questions after establishing trust with the participants. After the interviews, the transcripts were shared with the participants to ensure they fairly reflected the interviews. The three researchers discussed and reviewed the analytical process until a consensus was attained.
In addition, participants’ opinions were assessed by emphasizing the primary derived themes. Transferability indicates whether research results can be applied to other situations. Following Merriam’s (2009) suggestion, to improve transferability, we tried to include the most typical cases while also including a wide range of participants and being as descriptive as possible [24]. Auditability refers to whether other researchers would obtain the same results using the same procedure. The data collection, methods, and study periods were all recorded in as much detail as possible to enhance the auditability of this study. In addition, data analysis was subject-centered; original data were inserted as quotations. Lastly, to increase confirmability, which refers to the degree of objectivity, the researchers sought to reflect on the experiences of the participants as much as possible to reduce researcher subjectivity and bias.

6. Researcher’s Preparation

The first author has conducted more than four qualitative studies including various analysis methods and has written two articles using qualitative meta-synthesis, a methodology for synthesizing qualitative research results. All of the researchers are psychiatric mental health nurses who have been working with PWMD in the community for nine to more than 30 years. They have systematic knowledge of qualitative research and mental health nursing, as well as knowledge and skills in qualitative research methods.

7. Ethical Considerations

This study was approved by the institutional review board of the researchers’ affiliated institution (IRB No. 2009/001-010). Before conducting the interviews, we carefully explained the purpose of the study to the participants and emphasized that the data would be used only for research purposes. Researchers also ensured participants that their anonymity was guaranteed and that they could disengage at any time without penalty. The consent form was written in simple language. Participants received appropriate financial compensation for their time and participation.

RESULTS

1. General characteristics of the participants

In total, 12 participants were included (seven females and five males). Their experience with PWMD activities ranged from six months to more than 10 years. For each freelancer, the time when they became recognized as PWMD activists was considered as the time when their PWMD activities began. The general characteristics of the study participants are presented in Table 1. As South Korean PWMD activities are not yet common, detailed information is excluded to protect the participants’ personal data.

2. Thematic Analysis

The overall theme throughout the role identity of PWMD activists was “one who publicly voices the rights of the group while leading colleagues in parallel with the reconstruction of life.” Three themes on intrapersonal, interpersonal, and socio-political aspects, along with 10 subthemes, were derived (Table 2).

3. First theme: A Person Who Accepts Their Problems and is Rebuilding His or Her Life through Self-realization Despite the Difficulty of Working with an Illness

The first theme corresponds to the individual role identities of PWMD activists. The activists accepted that they were PWMD and were rebuilding their lives despite their difficulties. The sub-themes are “carrying painful memories and experiences of exclusion and discrimination in the past,” “emerging opportunities for self-realization emerged with the help of experts and institutions,” “confident self-determination based on self-disclosure,” and “perceiving difficulty of working with vulnerable people.”

1) Carrying painful memories and experiences of exclusion and discrimination in the past

The participants experienced discrimination and isolation because of their diseases, and such experiences informed their activities. Most participants spoke of painful and traumatic memories of forced hospitalization. The trauma caused by violence and coercion remained a source of unhappy memories.
I was hospitalized in 20xx and thought it was outpatient treatment, but it was a closed ward. No one said that I would be hospitalized. It was really shocking. There was no explanation. (Participant 3)
Apart from hospitalization, the discrimination and exclusion experienced when living with an illness were widely reported. Participants were excluded from family weddings and encountered disconnection and isolation in their academic lives. Poverty was also common among participants, as their mental disorder made it difficult to find a well-paying job. Participants switched between various part-time jobs, and a vicious cycle emerged.
I really wanted to make my own money, so I watched a lot, and I watched flea markets, but when you look at flea markets, they don’t all fit. First of all, it takes age. Everyone wrote that there is no age limit. So there, and, if we’re really sick, if we’re old enough to get better, how old do you think you are? I’m in my late 40s. Now I’m getting better, and then I go and say, “I want to be a bookkeeper,” then who’s going to use a young person, who’s going to use an old person? That’s what it took. (Participant 12)

2) Emerging opportunities for self-realization with the help of experts and institutions

The discrimination, exclusion, and economic difficulties experienced by the participants motivated them to commence activities owing to their desire to escape hardship, gain the support of people around them (including experts), and seek the aid of social institutions.
The social workers at the community center I went to after I was discharged listened to my story, and the social workers listened to me. I started studying recovery (from mental illness) at the center. Before I became a PWMD ACTIVIST member, I got a lot of strength from my colleagues. So I thought I’d pay my colleagues back. (Participant 1)
Programs provided by institutions such as the Mental Health Welfare Centre gave participants new perspectives on life. All were immersed in their diseases, but they were now able to consider both their own and others’ situation. A desire to help people in similar situations grew naturally. The help of center staff who listened and offered emotional and institutional support created the driving force for the commencement of PWMD activities.
Many participants cited self-actualization as a personal goal during PWMD activities. This is directly associated with PWMD activists’ role identities. Although PWMD activists are paid very poorly, the participants clearly distinguished between their previous part-time jobs and their PWMD activities. They considered that such activities promoted self-realization, which was more important than simply maintaining a livelihood, and increased their desire to show their abilities and potential.
(In the past) I’ve had various jobs, but once I get used to it, they don’t give me anything difficult. They give us something to adjust to because we’re disabled, but honestly, it’s not fun to wash and deliver dishes. However, I can do it without having a hard time. I can earn pocket money. At that time, there was no great reward or sense of self-fulfillment. (Participant 4)
If you’re doing something that’s self-actualizing and meaningful, it’s related to the PWMD activity, whereas [working at] a convenience store is just something you do because you want to have a part-time job and you want to make money. (Participant 2)

3) Confident self-determination based on self-disclosure

This topic describes the process by which participants accept being a PWMD and, in doing so, become confident in making their own decisions. Many participants readily expressed their views on PWMD activists. The experience of living with a mental disorder was deeply projected. The more strongly the participants experienced discrimination and exclusion, including forced hospitalization, the more likely they were to point to their past experiences as an important feature of PWMD activists.
If I didn’t have the experience of discrimination, I couldn’t do my job (PWMD activist) properly because I lost everything after my discharge from the (mental) hospital. Without such an experience of social exclusion and discrimination, networking with a similar group is difficult. I think that support, life experience, experiences of illness, efforts to cure it, and sharing it together are important. (Participant 3)
There were some opposing views. Some stated that, in modern society, everyone feels mental pain, with the difference lying only in severity, and anyone can become a group participant. Even if a person has no experience of forced hospitalization, they can engage in PWMD activities.
If you set standards such as forced hospitalization, hospitalization experience, and taking medicine, I think it’s more against the mental disorder movement. (Participant 1)
Despite the conflicting views on PWMD activists’ qualifications, they all focused on PWMD. The participants thought it possible to form a consensus when talking with PWMD and gained confidence, which they could not acquire when doing other work. They finally realized that the best thing they could do was to foster PWMD activities. This confidence and realization allowed participants to envision a better future for themselves.
I think we can do many things for [PWMD]. They become professors, they do research, they become activists. (Participant 9)
An important PWMD activist’s role identity in terms of PWMD activities is that of opening up and speaking out. PWMD activists are PWMD who have raised their voices in various ways. They publish books, write poetry, have YouTube channels showing themselves engaging in their daily lives, give human-rights lectures, participate in debates, join rallies and solidarity gatherings, and accept interviews. PWMD activists open themselves up.
If I keep crouching and hiding, I can’t improve myself. I mean... I thought it would be nice if I could improve my perception by revealing a little bit like this. (Participant 10)
Everything I do as a PWMD person seems to be a PWMD activity, from breathing... However, things that hide that I am a PWMD activist cannot be PWMD activities, right?. (Participant 9)
Participants cited self-acceptance as a key prerequisite for self-disclosure. Even when engaged with the center’s program and PWMD activities, including advocacy, they sought to first recognize and accept themselves. This was not easy. For example, many PWMD activists said their self-esteem was reduced by the weight gain associated with psychiatric drugs, but they accepted this and sought courage. Positive feedback increased their self-esteem.
I think that PWMD activities heal PWMD. Anyway, I think it’s most important to have the right to self-determination. (Participant 1)
Participants gained the strength to live their lives via PWMD activities. Specifically, these activities healed many traumatic memories related to their mental disorders and PWMD experiences. Their sense of responsibility increased when they developed relationships with others. They were able to decide what direction their lives should take, and they took control of their destinies. The PWMD activities created meaning, gave participants a voice, and moved them forward.

4) Perceiving difficulty of working with vulnerable people

PWMD activists serve as peer counselors. The primary task of such a counselor is to listen to the difficulties faced by other PWMD. However, it is difficult to listen to the grievances of others if one is physically or mentally unwell. In addition, doubts that arose when collaborating with institutional staff created constant difficulties for the participants. Most participants emphasized maintaining their personal health, including symptom control, as it was important when seeking to do their work appropriately.
In peer counseling, sometimes I have to listen to the client’s symptoms. It’s okay when I’m in a good [state], but it’s hard to accept when I’m in a bad state. So, I’m the one who’s supposed to be helping, but if I’m struggling with my symptoms, it’s hard. (Participant 4)

4. Second Theme: A Person Who Takes the Lead in Helping Peers Based on Common Experiences and Network-Building

This theme reveals the relational role identities of PWMD activists, they advocated for their rights based on their shared experiences and networks; the sub-themes include “understanding and genuinely empathizing with colleagues,” “establishing a network of PWMD activist to alleviate isolation,” “helping co-workers by devising and testing creative activities.”

1) Understanding and genuinely empathizing with colleagues

The participants received support from those around them as they accumulated experience in PWMD activities and watched and supported the growth of other PWMD. They were helped by colleagues with shared experiences, and they realized the importance of sharing their voices. Amid difficult work, even a small compliment becomes very important. Confidence grows steadily in a peer group that both supports and advocates for others. When meeting responsive PWMD, participants realized they were not alone, and empathy grew. They felt a deep sense of responsibility, both for others and themselves.
It’s actually more healing and rewarding to come out and actually play a role in helping others, and over time, you start to have colleagues, you start to understand, and you start to realize that it’s not just me, it’s not just him, they are having a hard time, and you start to have that sense of camaraderie. (Participant 4)

2) Establishing a network of PWMD activists to alleviate isolation

Most participants considered PWMD isolation problematic and stated that PWMD activist networking was important. A considerable number of PWMD activists made efforts to communicate with other PWMD. One participant learned how meaningful it was to open up and share their experiences as activists. They realized the need for solidarity and wanted to help other PWMD activists in the same position upon meeting them.
I think we need to connect with each other while networking. If I have heart disease or cancer, I want to join a patient support group. (Participant 2)

3) Helping co-workers by devising and testing creative activities

Based on their experiences as PWMD, participants devised and implemented creative activities and advocated for their peers. This was possible because they listened to and empathized with the stories of others. One participant shared an experience of solving housing safety problems that even the police could not manage. A colleague who provided support by naming auditory hallucinations in a manner found useful in the past was now assisting other PWMD. Moreover, creative ideas were dispersed by broadening the perspectives of participants. In fact, the PWMD activists regarded many other PWMD activists as role models.
When I met five PWMD, they all said this: they want to talk about symptoms, but they can’t even talk to a doctor or staff at a mental-health welfare center. However, meeting a fellow PWMD counselor makes them feel comfortable talking about their symptoms, and they don’t think I’ll get angry or anything. That’s good. (Participant 6)
There’s one reason I’m living my life. I did a really good job during the lecture about human rights. Afterwards, one of the members there said to me, “Can I teach like you later?” She really asked this! I was so touched. The memory remains with me. If I ever want to kill myself, I will find hope there. (Participant 8)

5. Third Theme: A Person Who Speaks Publicly to Improve Social Awareness and Advocate for Rights and Interests

The third theme addresses the role identities of PWMD activists in terms of social activities. They publicly advocated for improved social awareness and PWMD rights and interests. The subthemes are “participating in social movements seeking to eliminate social prejudice and prevent unfair treatment,” “formally engaging in social issues as a PWMD activists,” and “constructively criticizing the role of expert groups.”

1) Participating in social movements to eliminate social prejudice and prevent unfair treatment

Even participants who evidenced the most conflicting opinions of PWMD activists’ qualifications agreed that the main purpose of PWMD activities was similar to that of a social movement. Most activities sought to eliminate prejudice against PWMD, which is rooted deeply in society. The PWMD reaffirmed their rights as members of society, and participants considered it important to fight actively against unreasonable discrimination and social exclusion.
Of course, there is discrimination and prejudice, but if we don’t speak out and stay still, we’re bound to suffer whatever we do outside. What I can do is show that there are activities like this. PWMD activists can do it. (Participant 9)
Half of the participants shared experiences of actively responding to the use of the term collective schizophrenia by certain politicians in February 2021 by protesting and filing complaints. Working purposefully to politically protect the rights and interests of other minorities, as well as themselves, was a common goal:
Interestingly, no matter how rich you are, whether you are a professor, a homeless person, or a non-disabled person, there is one vote per person. If the number of patients with schizophrenia is 1%, it is 500,000 people. It’s a vote that politicians can’t ignore. But the problem is that there aren’t 500,000 people. We don’t reveal it. (Participant 9)

2) Formally engaging in social issues as a PWMD activist

The fact that opportunities for PWMD to participate in society have increased is considered an important change. When establishing the Hospitalization Suitability Review Committee in 2019, it was specified that PWMD and family members needed to be included. Today, the voices of PWMD are heard within systems. In addition, the salary of PWMD activists has increased.
Participants reported that derogatory or discriminatory remarks about PWMD remained prevalent. Nevertheless, they constantly advocated for their rights and shared their experiences of visible change. Thus, they came to realize that consistent advocacy helped to change perceptions.
These days, I often get announcements about recruiting fellow supporters. (Participant 7)
It’s a 180-degree difference from when we first started working together. It’s something that the parties are slowly playing a role in this society somewhere. (Participant 3)

3) Constructively criticizing the role of expert groups

Participants frankly revealed the limitations that they experienced when communicating with experts. PWMD activists require expert support, but the expert-centered system still prevails in the field of mental health, as do the traditional “know-all” attitudes of experts. Although society has greatly changed recently, the participants insisted that more efforts should be made to listen to PWMD. This view was more evident among participants with more experience engaging in PWMD activities. “There was an atmosphere of disrespect for the activities (Participant 3)”. Likewise, A second-year PWMD activist working as a peer counselor in hospitals stated that they felt that they were not seen as co-workers. or people in the same position… but as patients (Participant 7), revealing the limitations of the social system and the roles of experts.

DISCUSSION

The researchers sought to understand PWMD activists’ perceptions of who they were and what they did. We found that PWD activists were rebuilding their lives, leading their colleagues through communication and empathy, and publicly voicing their rights. While we have not yet reached a consensus on what constitutes a PWMD activist, they commonly identified themselves as “people with mental disabilities” and confirmed that they are fulfilling roles related to PWMD. The researchers discussed three aspects of PWMD activists’ roles-specifically, examined their personal roles, their roles in relation to their peers, and their roles in socio-political activities.
First, all participants were rebuilding their personal lives through activities. And their activities have improved their quality of life and self-awareness by offering new meanings and hope. These findings are in line with previous research that has shown that PWMD activities improve quality of life and influence positive self-perception through the discovery of new life meaning and hope [25]. For most participants, change began with the help of experts and institutions. Ha (2021) found that the activities of PWMD commenced in mental-health rehabilitation facilities or welfare centers [18]. We confirmed that psychiatric experts and local institutions are very important in activist support. The activities exposed past experiences of exclusion and discrimination, promoting recovery. Johnson (2018) found that the re-admission rate to a closed ward fell by 25% in a group cared for by PWMD activists [26], and Ha (2014) reported a significant link between PWMD activist recovery and the ability to manage psychiatric symptoms [27]. One participant experienced a recurrence of symptoms but was not hospitalized in a closed ward. Rather, the participant overcame the crisis with the support of colleagues. Thus, PWMD activities can aid the recovery of both the service beneficiary and the provider.
However, helping people who are experiencing similar difficulties while engaging in activities can impose difficulty. Some participants experienced a worsening of symptoms during activities. In previous studies, the double identity of an ‘experienced expert,’ who is sometimes “a person who uses treatment services,” can be a risk factor for relapse [28]. PWMD activists’ emotional difficulties are caused by supervisors’ lack of understanding of their roles and prejudices in the workplace [25]. Strengthening the capabilities of PWMD via leadership training is essential for maintaining PWMD activities, as are efforts to understand PWMD’s vulnerabilities [18].
Second, PWMD activists advocated for their peers by building networks with people who had similar experiences. The participants understood their colleagues, relieving their feelings of isolation. Ha (2021) suggested that establishing relationships and sharing common daily life experiences with peer supporters was very helpful [18]. Song (2021) found that PWMD activities reduced social isolation by providing emotional support [28].
PWMD activities not only model success for colleagues but are also practical, increasing adherence to drug treatment and reducing repeat hospitalizations [25,29]. Moreover, the participants devised creative activities when engaged in helping others. This is possible because they had experienced similar difficulties, enabling them to provide a major benefit that mental health professionals cannot offer. However, there are many practical restrictions, including the refusal of institutions to co-operate [28]. Ha (2021) developed the principle of the psychiatric survivors movement as a complete independent subject, which has become the core tenet of PWMD activity [18]. Both the continuous assistance of mental health professionals and realistic co-operation by institutions are required to maximize PWMD activists’ autonomy and self-determination. Only then will the encouragement of PWMD be a genuine service.
However, difficulties caused by a lack of communication among PWMD activists and personal conflicts were also reported. These issues reflect the relatively short history of PWMD activities in South Korea [9]. As PWMD activities in South Korea are in their infancy, it is important to discuss future activities, considering Korean socio-cultural characteristics.
Third, PWMD activists defined their roles as public advocates to improve social awareness of PWMD and defend PWMD rights. PWMD activists participate in social movements to eliminate prejudice and improve treatment. Such voices are an important part of role identities that gradually change society, and PWMD should not be subject to prejudice and stigmas. The outcomes appear to be better when involvement in activities is more protracted; thus, sustained participation is important.
Although opportunities to participate in activities increase when PWMD become PWMD activists, they remain insufficient [9]. Participants reported facing various institutional barriers, including unclear role definitions, power imbalances, and doctor-centric medical approaches to care [30]. In addition, problems such as conflicting with psychiatrists when seeking to foster peer supporters, being perceived by psychiatrist colleagues as unskilled and mentally ill, and receiving low wages have been noted [25, 30]. A nationwide system is required to expand opportunities for PWMD activists’ social participation and the recognition of PWMD activists as professionals. Currently, the Korean Mental Health Act only indirectly recognizes the need for peer supporters. We hope that our findings can instigate the creation of a training program for PWMD activists and peer supporters.
The limitations of this study are that PWMD activities remain in their initial stages in South Korea, and it is unclear when such activities commenced. Moreover, the sample size is relatively small, and there are potential limitations to generalizing the outcomes across different groups of activists working in different contexts. Nevertheless, this study is significant in that it includes representative informants who are engaged in Korean PWMD activities, covers their activities in depth, identifies the role identities of current PWMD activists, and suggests directions for future research.

CONCLUSION

The researchers qualitatively analyzed data obtained during in-depth interviews to explore the role identities of PWMD activists. Overall, based on their role identities, PWMD activists can be defined as persons who publicly speak for the rights of PWMD while leading their colleagues in parallel with the reconstruction of life. We hope our findings will enable practitioners to nurture PWMD activists and advocate for them. Moreover, our data can serve as a basis for PWMD activist training in countries where the psychiatric survivors movement is in its infancy.

CONFLICTS OF INTEREST

The authors declared no conflicts of interest.

Notes

AUTHOR CONTRIBUTIONS
Conceptualization or/and Methodology: Kim, JD & Kim, S
Data curation or/and Analysis: Kim, JD, Kim, S, & Joung, J
Investigation: Kim, JD & Joung, J
Project administration or/and Supervision: Kim, JD, Kim, S, & Joung, J
Visualization: Kim, JD
Writing: original draft or/and review & editing: Kim, JD & Joung, J

Table 1.
General Characteristics of the Participants
Participant number Gender Duration of PWMD activism
1 Man Approximately 8 years
2 Woman 15 months
3 Woman More than 10 years
4 Man Approximately 5 years
5 Man 6 months
6 Man Approximately 2 years
7 Woman Approximately 2 years
8 Woman Approximately 2 years
9 Man Approximately 2 years
10 Woman Approximately 10 years
11 Woman Approximately 2 years
12 Woman Approximately 2 years

PWMD=people with mental disorders.

Table 2.
Themes of the Study
Themes Subthemes
Theme 1: A person who accepts their problems and is rebuilding his or her life through self-realization despite the difficulty of working with illness ∙ Carrying painful memories and experiences of exclusion and discrimination in the past
∙ Emerging opportunities for self-realization with the help of experts and institutions
∙ Confident self-determination based on self-disclosure
∙ Perceiving difficulty of working with vulnerable people
Theme 2: A person who takes the lead in helping peers based on common experiences and network-building ∙ Understanding and genuinely empathizing with colleagues
∙ Establishing a network of PWMD activists to alleviate isolation
∙ Helping co-workers by devising and testing creative activities
Theme 3: A person who speaks publicly to improve social awareness and advocates for rights and interests ∙ Participating in social movements seeking to eliminate social prejudice and prevent unfair treatment
∙ Formally engaging in social issues as a PWMD activist
∙ Constructively criticizing the role of expert groups
Overarching theme: one who publicly voices the rights of the group while leading colleagues in parallel with the reconstruction of life

PWMD=people with mental disorders.

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