Quaderns de Psicologia | 2024, Vol. 26, Nro. 1, e1963 | ISNN: 0211-3481 |
https://doi.org/10.5565/rev/qpsicologia.1963
Francisco José Eiroa-Orosa
Maria Rovira-Gimó
Universitat de Barcelona
Abstract
Stigma suffered by people labelled with mental health diagnoses is something frequent within the healthcare context. Anti-stigma organizations and campaigns have focused their efforts on reducing discrimination in this area. The activist figure is fundamental for people who have experienced this stigma to be the protagonists of this change. Our aim in this study has been to deepen the experience that anti-stigma activists in mental health have when participating in actions to raise awareness in the healthcare context. We carried out a thematic analysis of semi-structured interviews conducted with five activists. We identified two thematic blocks: Stigma and Activism. The Stigma block consists of the themes Prejudice, Discriminatory Behaviours, and Self-Stigma, while the Activism block is composed of the themes Positive Effects, Strategies, and Impact. The present study has allowed us to have deeper knowledge of the subjective experiences of stigma in the healthcare field through the experience of participants in campaigns to combat it, and to understand why activism can be a beneficial strategy to raise awareness among professionals and for the well-being and empowerment of the activists themselves.
Keywords: Activism Thematic analysis Social stigma Mental health
Resumen
El estigma que sufren las personas con diagnósticos de salud mental es algo frecuente dentro del ámbito sanitario. Entidades y campañas de lucha contra el estigma han centrado sus esfuerzos en la disminución de la discriminación en este ámbito. La figura del activista es fundamental para que las propias personas que han experimentado este estigma sean protagonistas de este cambio. Nuestro objetivo en este estudio ha sido profundizar en la experiencia que las y los activistas contra el estigma en salud mental tienen al participar en acciones de sensibilización en el contexto sanitario. Hemos realizado un análisis temático de entrevistas semiestructuradas a cinco activistas. Se han identificado dos bloques temáticos: Estigma y Activismo. El bloque de Estigma consta de los temas Prejuicios, Conductas discriminatorias y Autoestigma, mientras que el bloque de Activismo está compuesto por los temas Efectos positivos, Estrategias e Impacto. El presente estudio nos ha permitido conocer en profundidad las experiencias subjetivas de estigma dentro del ámbito sanitario a través de la experiencia de las personas participantes en campañas para combatirlo y entender por qué el activismo puede ser una estrategia beneficiosa para sensibilizar a los profesionales y para el bienestar y empoderamiento de las y los propios activistas.
Palabras clave: Activismo Análisis temático Estigma social Salud mental
The history of mental health care has been marked by various struggles for the dignity of those affected (Goldman & Morrissey, 1985). In the mid-nineteenth century, the United Kingdom witnessed the initiation of the first political advocacy campaigns, which sought to defend the rights of individuals admitted to psychiatric hospitals (Hervey, 1986). Moving into the twentieth century, movements such as anti-psychiatry, survivor advocacy, consumer groups, and, more recently, first-person perspectives have emerged in our cultural context. These movements questioned the practices of mental health professionals, and many of their demands have been translated into public policies. This has paved the way for processes of psychiatric deinstitutionalization and the implementation of community services, which were introduced in Spain in the eighties (Vázquez-Barquero & García, 1999). As a result of these institutional transformations, albeit not without difficulties, coercive measures and prolonged hospitalizations are starting to decrease. Nevertheless, even today, mental health care is often approached from a paternalistic perspective that may not fully respect the preferences and rights of service users (Sashidharan et al., 2019).
Parallel to the tensions and transformations in mental health care, the concept of stigma was developed. Sociologist Erving Goffman (1963) defined stigma as an “attribute that is deeply discrediting.” While Goffman was not the first to discuss stigma, he is recognized as a pioneer in systematizing the concept (Link & Stuart, 2017). From a sociocognitive perspective, stigma comprises three structures: stereotypes, prejudice, and discrimination (Sheehan et al., 2017). Stereotypes pertain to public attitudes. For instance, a common stereotype is the belief that “people diagnosed with mental disorders are dangerous.” Prejudices are characterized as emotional reactions stemming from the acceptance of these public attitudes. In the case of the aforementioned example, it would involve affirming that individuals diagnosed with mental disorders are, indeed, dangerous. As a reaction to this belief, individuals may feel uncomfortable sharing a space with someone exhibiting this characteristic. Finally, discrimination is perceived as behaviours that emanate from stereotypes and prejudices. In the context of the example provided, discrimination would manifest as actively avoiding interactions with individuals diagnosed with mental disorders (Krupchanka & Thornicroft, 2017). In essence, stigma operates by generating negative stereotypes about marginalized social groups, which subsequently give rise to social narratives that justify their discrimination (Livingston & Boyd, 2010).
The most common stereotypes associated with mental disorders include perceptions of dangerousness, incompetence, and permanence (Sheehan et al., 2017). Among these, dangerousness is particularly prominent and poses a significant challenge in terms of discrimination. This stereotype revolves around the belief that individuals diagnosed with mental disorders are prone to violence and unpredictability. It is this specific stereotype that significantly impacts people’s willingness to be in proximity to those diagnosed with mental disorders (Angermeyer & Matschinger, 2005). Incompetence refers to the belief that individuals with mental disorders are incapable of leading independent lives (Sheehan et al., 2017). This aspect is reflected in the workplace, where derogatory comments about the skills of individuals with mental disorders are often made (Jenkins & Carpenter-Song, 2009). Finally, permanence refers to the perception that mental disorders are severe and chronic (Hayward & Bright, 1997). Consequently, this perception can influence the support received by individuals considered to have a “chronic” problem, diminishing their potential to develop an autonomous life project.
Following Goffman’s tradition, mental health stigma operates across three interactive levels: institutional or structural, interpersonal, or social, and individual or personal (Livingston & Boyd, 2010). Structural or institutional stigma pertains to the rules, policies, and procedures of public and private organisations in positions of power that impose restrictions on the rights and opportunities of individuals diagnosed with mental disorders. Social stigma, also referred to as public stigma, involves the creation of stereotypes that work against a stigmatised group (Corrigan et al., 2005). Thus, public stigma stands as the greatest barrier to the social participation of people diagnosed with a mental disorder (Rubio-Valera et al., 2016). Finally, individual, or personal stigma refers to the one experienced from the person’s own perspective (Gerlinger et al., 2013). Personal stigma encompasses experienced, perceived, and internalized stigma. Experienced stigma is defined as the encounter with actual discrimination faced by the individual (Gerlinger et al., 2013). Perceived stigma, on the other hand, relates to the subjective perception of being despised and marginalised (Link et al., 2001). Finally, internalized stigma, often referred to as self-stigma, is the acceptance of social stigma (Corrigan & Watson, 2002). This involves a subjective process in which individuals internalize the stereotypes created by society, anticipate rejection, perceive the stereotypes as relevant, and view themselves as devalued members (Corrigan et al., 2005; Livingston & Boyd, 2010).
To combat stigma, various social movements and institutions have initiated campaigns employing strategies such as promoting social contact and educational interventions targeting both general and specific audiences. (Gaebel et al., 2017). In Spain, there are several initiatives promoted by various organisations. Alongside numerous initiatives undertaken by local associations, sometimes coordinated by first-person federations such as “En Primera Persona” in Andalucía, and “Veus” in Catalunya, or by the “Confederación Salud Mental España,” an organization stemming from the family movement, there is also the “Chair Against Stigma” at the Complutense University. Additionally, two campaigns with the support of regional governments have been launched: “1 in 4” in Andalusia, named after the statistic, that 25% of the world’s population will face a mental disorder in their lifetime, and “Obertament,” the Catalan association dedicated to combating stigma and discrimination in mental health. After several campaigns targeted at the general public (Aznar-Lou et al., 2015), Obertament has initiated interventions targeting key actors, including students (Andrés-Rodríguez et al., 2017), social services professionals (Rubio-Valera et al., 2018), and health professionals (Eiroa-Orosa et al., 2021). In this study, our focus will be on interventions specifically directed at health professionals.
Although it may appear paradoxical, health professionals, particularly those specialising in mental health, exhibit discriminatory behaviours towards individuals diagnosed with mental disorders, much like the general population (Henderson et al., 2014; Schulze, 2007). One of the most extensive observational studies conducted to date (Corker et al., 2013) revealed that, with minor temporal fluctuations, approximately 90% of individuals utilizing mental health services in England had encountered at least one episode of discrimination from the health professionals responsible for their care. The perception of the mental health of healthcare personnel is a determinant of the treatment users will receive (Obertament, 2016). Consequently, the professionals’ perception of individuals with a mental disorder will influence attitudes towards respecting the rights of users (Eiroa-Orosa & Limiñana-Bravo, 2019) and, by extension, impact the quality of care received (Corrigan, 2004).
Similar to the general population, discriminatory behaviours among mental health professionals stem from stereotypes such as danger, incompetence, and permanence. The coercion employed in certain mental health settings is often rooted in the stereotype of danger (Large et al., 2008). The stereotype of incompetence gives rise to paternalistic attitudes, characterized by interference with a person’s freedom of action, justified on the grounds of their well-being or interests (Ramos Montes, 2021). This justification often leads to decision-making without the active participation of the individual, who tends to be treated in an infantilizing manner. Lastly, the stereotype of permanence justifies the prolonged use of psychotropic drugs or the existence of long-term care facilities without a focus on the recovery of a meaningful life project. Conversely, the reductionist perspective on mental health problems by somatic health professionals can result in errors, such as the phenomenon known as diagnostic eclipse. This entails interpreting symptoms of physical discomfort as a consequence of a mental disorder (Nash, 2013). This phenomenon can have serious consequences, as it may result in the neglect of symptoms that could indicate life-threatening diseases.
Obertament’s initiatives are conceived and executed with the co-leadership of activists—individuals who have personally experienced or are currently experiencing mental health issues. These activists draw from their own experiences to conduct awareness activities aimed at combating stigma. In the awareness sessions facilitated by activists, the concept of stigma and prevailing prejudices surrounding mental health are discussed. Additionally, a life story is shared, highlighting experiences of discrimination and self-stigma. Prior to engaging in such sessions, Obertament provides training to familiarise participants with activism strategies. This space serves as a platform for everyone to develop and share their life stories.
This study aims to analyse the experiences of Obertament activists who have carried out activism actions in the healthcare sector. The selection of this association aligns with its values and objectives in the struggle for the dignity of people, and to spotlight a line of work that is especially intricate yet necessary. Furthermore, to our knowledge, although there is evidence of the effectiveness of interventions against stigma carried out in this sector (Lien et al., 2021), there is no literature that explores the subjective experience of the people carrying out the actions. Therefore, the objective of this study is to understand the subjective experience of Obertament’s activists involved in the line of work to combat stigma in the healthcare sector. We aim to gather experiences related to lived experiences of stigma and the efforts to combat it through activism.
To conduct this study, we reached out to five Obertament activists with the intention of conducting semi-structured interviews with each of them. All individuals interviewed possessed experience in activism within the healthcare sector. Furthermore, some of them have also had the opportunity to engage in awareness interventions in educational or media settings.
The interview questions were centred around the awareness activities conducted within the health context, probing into the participants’ experiences in carrying out these tasks and their expectations for change through activism. As evident in the results and discussion section, the dynamic nature of the interviews often led to discussions on aspects related to the nature of stigma as a social phenomenon.
We also consider it important to reflect on the research position of the authors of the work. The first author, in addition to an academic role, has taken on activist roles against stigma within the association Obertament. In the case of the second author, a student with no prior experience in activism within this field, she was able to leverage the connections of the first author to conduct the interviews and received supervision to carry out the analysis. Therefore, while the axiological position of both authors reflects a commitment to the cause against stigma, the distribution of tasks facilitated the opportunity for the activists interviewed to share their experiences with someone outside the usual circle of activism.
All the activists interviewed provided signed informed consent. The interviews were recorded using a mobile device and later transcribed, with the exception of one participant who opted to respond to the questions via email. Once transcribed, the texts were inputted into a database within a dedicated qualitative analysis software (ATLAS.ti).
To analyse the data, we opted for a thematic analysis following the methodological framework proposed by Virginia Braun and Victoria Clarke (2006). Thematic analysis enables the identification and analysis of common patterns within the data, which are referred to as themes. One notable advantage of this qualitative analytical method is its flexibility and ease of application, making it particularly accessible for students.
The phases followed to carry out the analysis were as follows:
Two overarching thematic blocks have been identified: Stigma and Activism. Each block has been categorised into themes, which result from grouping several codes in a non-exclusive fashion. This means that a code can be associated with multiple themes (refer to Appendix A). For comprehensive details on each topic, including frequencies and examples, please consult Appendix B.
Regarding the Stigma block, the themes created are: Stereotypes and Prejudices, Discriminatory behaviors and Self-stigma. As for the Activism block, the themes created are: Positive Effects, Strategies, and Impact. It has been found appropriate to divide some themes into subthemes, since the different participants have specified Discriminatory behaviors, Positive effects and Concrete strategies.
Below are the definitions of the themes and subthemes mentioned, along with discussions for each section.
This block aligns conceptually with the structures of the socio-cognitive model (Sheehan et al., 2017). While Stereotypes and Prejudices have been grouped into a single theme, the Discriminatory Behaviours component has been divided into two subthemes: vertical gaze and diagnostic eclipse.
This topic pertains to the beliefs, attitudes, and reactions of society towards individuals diagnosed with a mental disorder from the perspective of activists. It encompasses both public attitudes and emotional reactions. For instance, the stereotype of danger (Corrigan et al., 2005; Sheehan et al., 2017) would be considered part of public attitudes.
One day I went to a dinner party and people were dressed up. I saw a guy wearing a uniform, a whip, and a mask. He said he was an insane asylum patient [sic]. It’s that it makes a very clear association with being crazy, being a killer [sic]. It is what we say, if you look at the statistics you see that we are not more violent than the rest, they usually cause violence to us. (Interview 3, personal interview, November 2018)
In the context of the media, activists perceive that the stigma generated at this level poses significant challenges to their work. The reach of the messages is challenging to neutralise despite the continuous efforts of the organisations.
People watch the murder series and of course, “the crazy.” It is a very negative image and that is not what they will find in reality (Interview 3, personal interview, November 2018).
The resulting prejudices, such as feeling less secure as a professional on certain devices, would be the emotional reaction stemming from the agreement with this fact (Sheehan et al., 2017). As we will see in the next subtopic, the interplay between these factors could lead to the development of discriminatory behaviours, including paternalism and coercion.
This theme encompasses two subthemes related to behaviours observed or experienced by activists. Firstly, Vertical Gaze refers to the power imbalance and, consequently, violations of rights related to paternalism and coercion (Ramos Montes, 2021; Schulze, 2007).
It is to show the authority and here you will do what we tell you and you will take the pill without giving problems because otherwise… (Interview 5, personal interview, December 2018)
And the Medical Tribunal “ruled that I am incapable of anything” … years ago. [sic] (Interview 2, personal interview, November 2018)
I’ve been threatened. If you don’t take your medication, what do you want, for us to tie you up again? (Interview 5, personal interview, December 2018)
On the other hand, there are testimonies that align with the definition of the concept of diagnostic eclipse, indicating the persistence of this type of discriminatory behaviour already identified in previous studies conducted with the user population of health services in Catalonia (Obertament, 2016).
We explain that a person who has had problems with the arm, for example, has wanted to play with children and has hurt himself. He wants the doctor to pay attention to him and maybe the doctor says, he is already starting to have some symptoms and he does not take it seriously and they do not do a simple X-ray to verify that it is true. (Interview 3, personal interview, November 2018)
If the GP sees that the person has an obsessive disorder and sees that “something” [sic] comes from something organic, physical, which in principle has nothing to do with it, but can attribute it to the disorder. (Interview 4, personal interview, December 2018)
In all cases, participants mentioned the concept of Self-Stigma (Livingston & Boyd, 2010) at some point. This concept is situated within the broader concept of personal stigma (Gerlinger et al., 2013) and, therefore, pertains to the self-image of the activists. It encompasses ideas reflected in codes such as insecurity, loneliness, pain, and self-blame, resulting from the acceptance of social stigma and the prejudices of professionals. These feelings contribute to the development of behaviours such as hiding the diagnosis or experiencing difficulties in asking for help (Corrigan et al., 2014).
You can’t imagine the years I’ve been blaming myself for being bad and not performing or not getting where I was before. (Interview 2, personal interview, November 2018)
It is true that at work you have to shut up, say nothing. (Interview 3, personal interview, December 2018)
This theme pertains to the positive feelings that activism evokes among participants and includes the subthemes of Wellbeing and Empowerment. The being subtheme encompasses codes that reflect a state of satisfaction and fulfilment.
And that moment comes and then you decide to start facing your own demons, because you know that this way you can help others and yourself as well. (Interview 2, personal interview, November 2018)
Activists explain that taking actions has increased their self-esteem and sense of usefulness.
It makes me feel very useful, but useful in society, in life. (Interview 5, personal interview, December 2018)
All participants expressed a high level of satisfaction with their roles as activists. It is noteworthy to highlight the code “Usefulness” within the topic of Wellbeing, as all participants referenced it at some point during the interviews. Additionally, the theme of support emerged, with participants explaining that through Obertament, they have connected with individuals facing similar situations, providing a solid support network. This has allowed them to share their experiences and feel more accompanied.
It is discussed so that these people have an example of someone who has recovered, people who are a little lost, restless and such, who have a little more perspective and who know that later, when they leave, they can seek help, that they are not so alone. (Interview 3, personal interview, November 2018)
At the same time, the Empowerment subtheme includes codes that reflect feelings of personal growth and accountability.
Most of them you carry in your pocket. I have emerged relatively victorious from most challenges. Relatively. (Interviewed 5, personal interview, December 2018)
Wellbeing and Empowerment are closely intertwined. The aspect of accountability, included in the definition of the Empowerment subtheme, has been considered a distinctive point. The high percentage of presence in this theme, and the fact that both subthemes refer to positive emotions, is indicative of the satisfaction of activists within their activity fighting against stigma. In fact, previous studies conducted with Obertament in training activists (Eiroa-Orosa & Lomascolo, 2018) have already linked these activities to an increase in wellbeing, especially in individuals with high levels of previous self-stigma.
Participants explain and highlight a diverse range of strategies they employ when conducting awareness-raising activities. Strategies such as role play, social contact, maintaining a horizontal gaze, fostering naturalness, and initiating self-critical debates are prominently emphasized by the interviewed activists. They also underscore the importance of carrying out these strategies in synergy with the professionals who receive them.
What you have to do is have deft touch, because what is being told are facts and testimonies, someone who has suffered some prejudice, tell specific stories and there comes a time when professionals seem to go there to say that they do it wrong in some way and they get defensive. (Interview 4, personal interview, December 2018)
The strategy that all activists have consistently highlighted as very positive is First Person. Therefore, it has been deemed appropriate to distinguish it from the rest of the strategies by forming its own subtheme. The first-person testimony is rooted in what they all refer to as a life story.
What I have learned and is repeated to us a lot is that the first-person testimony, the life story, is the best tool to connect with people and thus be able to start raising their awareness.
And the first person people are the push and the engine, which must be constant, to transform this chrysalis into a beautiful butterfly. (Interview 2, personal interview, November 2018)
This strategy is not novel in the struggle for visibility and the assertion of rights. For many years, it has been a cornerstone for various groups, such as those in the feminist movement or the LGBTI movement (Renn, 2007). One of the guiding principles of Obertament is that the impact of interventions multiplies when conducted by individuals who have personally experienced stigmatising situations (Obertament, 2013). This imparts more legitimacy and credibility and is linked to an empowerment process for the individuals involved.
The primary objective of this awareness-raising task is to instigate a shift in mindset. In the pursuit of this objective, it is aimed to underscore the impact of activists engaging with mental health professionals. Regarding awareness sessions, activists explain encountering a wide spectrum of responses ranging from complete harmony to a justification of the system, primarily based on the belief that their experiences represent exceptional episodes and do not reflect of daily care practices. The issue of attending voluntarily or compulsorily is also discussed. In numerous instances, centres willingly agree to host these sessions but compel professionals to participate, leading to scepticism. Nonetheless, activists highlight that many professionals are genuinely interested in contributing to this change; they actively seek ways to enhance mental health care from both a personal and structural perspective.
There are many people who want to do it differently, to be more humanitarian, more horizontal, more respectful and to take more into account the opinion and feeling of their patients. (Interview 5, personal interview, December 2018)
I had a very pleasant feeling that mental health does have a great hope of improvement because all these professionals welcomed my life story, and myself, with a lot of respect and even affection. (Interview 2, personal interview, November 2018)
Activists find it positive when professionals engage in a self-critical debate, questioning the daily functioning of mental health services. Moreover, one participant emphasises that a systemic change is imperative for meaningful transformation.
We have to involve politicians; we have to involve the most hierarchical structures because we cannot make them depend only on the good faith of four people. (Interviewed 5, personal interview, December 2018)
This aligns with the findings of evaluations of interventions promoting the Recovery model, where it is evident that a transformation in staff beliefs, attitudes, and behaviours must go hand in hand and be reinforced by provider organisations and the public administration (Eiroa-Orosa & García-Mieres, 2019).
In this study, we had the opportunity to analyse the thematic framework present within the testimonies of five activists engaged in a project aimed at addressing stigma within the healthcare context, conducted under the auspices of the Obertament association. Through our analysis, we contextualised the structures outlined by the sociocognitive model of stigma. In the health sector, many prejudices present in other contexts, such as perceptions of danger, incompetence, and permanence, come into play. These stereotypes manifest as prejudices about the behaviour of individuals diagnosed with mental disorders, which are reflected in discriminatory behaviours by professionals who adopt an authoritative position towards service users. These attitudes further reinforce the self-stigma experienced by those affected. Within this context, the activism of Obertament emerges. Activists, drawing from their personal experiences, intervene to combat stigma in mental health, seeking to alter stereotypes towards individuals diagnosed with mental disorders. Activism activities generate feelings of well-being and empowerment, contributing to the reduction of their self-stigma.
One limitation of this study is the small number of participants interviewed. The sample size is small, although it is proportionally representative of Obertament activists engaged in awareness-raising activities in the health sector. Notably, one of the interviewees joined the Obertament team specifically to conduct interventions in the health field that were continuous and thoroughly evaluated (Eiroa-Orosa et al., 2021). While the interviewed individuals form a representative group both in terms of their experience and the proportion, they represent within the total number of activists working in the health field, it is plausible that interviewing more activists could have enhanced theoretical saturation (Saunders et al., 2018) and, consequently, provided a more robust understanding of the experience of activism in this context. Nevertheless, considering the available resources for this research action, we believe we have constructed a coherent thematic structure that illuminates the subjective experience of individuals engaged in this type of activism.
Future lines of work could explore the subjective experiences of activists in other contexts, such as work or education, and even activists with experiences in multiple domains. Such initiatives could provide insights into strategies to enhance the experience of individuals embarking on their activism journey.
In conclusion, despite the existence of stigma towards individuals diagnosed with mental disorders posing a hindrance to recovery, activism provides valuable tools for resilience and social transformation. In this regard, activism serves a dual purpose. On one hand, it aims to dismantle certain stereotypes ingrained in mental health professionals to prevent discriminatory behaviour. On the other hand, concerning the subjective experience of activists, it provides a collective space for understanding, support, and action that can aid in overcoming self-stigma.
BLOCK Theme Subtheme Codes |
Definition |
STIGMA |
|
Stereotypes and Prejudices |
|
Violent |
Specific situations in which they have felt identified as violent. |
Mental health image |
Perception that there is an image of mental health not shared among all the agents involved. |
Exceptionality |
The belief of mental health professionals that the discrimination situations that the activist explains are exceptional situations. |
Insane |
Specific situations in which they have been identified as crazy people. |
Invisibility |
Perception that mental health problems are less legitimate as they are less visible than somatic ones. |
Media |
Presence of stereotypes towards people with diagnoses of mental disorder in the media. |
Discriminatory behaviour |
|
Vertical Gaze |
|
Violation of rights |
Violation of people’s rights by professionals. |
Disempowerment |
Prevent the development of an autonomous life project. |
Incapacitation |
Judgment of a medical court in which the person is incapacitated to work. |
Threats |
Specific threats they have received from professionals. |
Paternalism |
Overprotective behaviour by professionals or family members. |
Motherhood |
Recommendation by professionals not to exercise motherhood. |
Derogatory vocabulary |
Vocabulary used in society towards mental disorders without being aware of what can harm. |
Improper treatment |
Fragments in which activists explain that the treatment by professionals is not appropriate. |
Mechanical restraint |
Situations in which professionals restrain the service user. |
Diagnostic eclipse Diagnostic eclipse |
Situations in which symptoms of physical discomfort have been interpreted as a result of a mental disorder without any further investigation. |
Self-stigma |
|
Shame and loneliness |
Assuming that loss of relationships is an inevitable consequence of diagnosis. |
Difficulty asking for help |
Problem asking for help because of the prejudices you have. |
Pain |
Anguish and suffering caused by receiving a diagnosis. |
Self-blame |
Blaming yourself for feeling sick and not reaching set goals. |
Hide |
Hiding the diagnosis. Both at work and from family and friends. |
Insecurity |
Worry, fear, having a hard time when starting to be activists. |
ACTIVISM |
|
Positive effects |
|
Wellbeing |
|
Referents |
Feeling of serving as a reference for other people in similar situations |
Understanding |
Feeling of being understood by fellow activists. |
Stability |
Feeling good, having control of oneself to carry out the task of mobilizing well. |
Self-esteem |
Reinforce positive feelings towards themselves. |
Safety |
Feel safe in the face of the awareness tasks. |
Strength |
Energy in taking responsibility and fighting for one’s own rights. |
Clash |
Feeling of struggle against one’s own fears. |
Confidence |
Self-confidence derived from the awareness-raising work carried out. |
Self-knowledge |
Get to know each other more thanks to the elaboration of a life story and lived experiences. |
Pride |
Feel happy and proud of the work done. |
Usefulness |
Feel useful for oneself and for society to be contributing to the change of mentality. |
Visibility |
Go out and stand up in order to be seen. |
Support |
Find support in other activists and colleagues who have gone through similar situations. |
Taking off Self-blame |
Realize that you are not guilty of your own diagnosis. |
Confidences |
Share experiences with other colleagues during training for activists or GAMs. |
Efficacy |
Feeling of convincing professionals of what is explained. |
Empowerment |
|
Self-knowledge |
Get to know each other more thanks to the elaboration of the life story and the lived experiences. |
Referents |
Feeling of convincing professionals of what is explained. |
Efficacy |
Feeling of convincing professionals of what is explained. |
Self-esteem |
Reinforce positive feelings towards themselves. |
First person |
Talk about your own experience. |
Trainers |
Identify with a role of trainer rather than a diagnosed person or service user. |
Expose privacy |
Feel safe while exposing intimate situations in front of the audience to which the session is addressed. |
Stand up |
Dare to stand up and show up to people with prejudices. |
Personal experience |
Feeling that sharing the experience has an effect on reducing stigma among health personnel. |
Strategies |
|
Normalize |
Talk about Mental Health as normal. |
Find middle ground |
Adapt to the public according to their needs. |
Reach everyone |
Reach professionals who are not sure what stigma is and its existence, because many times these are the ones who do not attend the sessions. |
Claim rights |
Claiming the rights of people with mental health problems |
Role playing |
A dynamic in which the public takes on the role of the professional and the service user in order to put themselves in their shoes. |
Continuous training |
Done by, as a mobilizer, being well trained and up to date. |
New perspectives |
Open the public to consider new visions through explanations of concepts and experiences. |
Perceptions change |
Cause a change in the perception that exists about mental health. |
Systemic change |
Involve the whole system (politicians, hierarchical structures) in change. |
Focus on Recovery |
Talking about the recovery process ahead of suffering. |
Definition of Mental Health |
Ask professionals to define the term mental health to observe from which point it starts. |
Life story |
Explaining your own experience. |
Horizontal look |
Position of professionals towards service users, who prioritize the first person. It would correspond to moving away from the paternalistic approach. |
Obertament Training |
Training provided by Obertament to train in activism. |
Debate among professionals |
Create debate among professionals where they can show their diverse opinions. |
No dramatising |
Develop the session away from the role of victim. |
Tact |
Act with the left hand, prevent professionals from feeling attacked. |
Continuous work |
Fragments in which it is explicit that continuous work is necessary to achieve changes. |
Naturalness |
Explain naturally, how it comes out from the inside. |
Humanize professionals |
Work with professionals from their facet as people. In this way invite them to realize that they also experience contradictory thoughts and developed attitudes. |
Training to combat stigma for professionals |
Talk about stigma and prejudice around mental health. |
First person |
|
Expose privacy |
Expose intimate situations in front of the audience to which the session is addressed. |
Refute with experience |
Strength of being talking about your own experience and thinking that no one can refute your life. |
Life story |
Explaining one’s own experience with a mental disorder. |
Impact |
|
Systemic change |
Involve the whole system (politicians, hierarchical structures) in change. |
Evolution |
Belief that there has been a favourable evolution with respect to SM stigma in recent years. |
Hope for change |
Belief in the fact that the message of awareness arrives that can lead to the change of mentality. |
Change in perceptions |
Cause a change in the perception that exists about mental health. |
Critical professionals |
Position adopted by professionals when analysing their behaviour. Many times, they become the same judges of their medical malpractices. |
Obliged professionals |
Compulsory attendance (required by the workplace) to activist sessions. This can create a more sceptical environment. |
Feeling questioned |
Sentiment of professionals in which they receive criticism towards their medical practices as an attack. |
Interest |
Curiosity, paying attention, desire of professionals to change attitudes. |
Diversity of reception |
Perception of the fact that some professionals are highly motivated by change and others are very sceptical. |
Healthy discussion between professionals |
Create debate among professionals where they can show their diverse opinions. |
Themes |
Citations |
% |
Words |
% |
Example citations |
ESTIGMA |
|||||
Stereotypes and Prejudices |
12 |
6,28 |
531 |
7,58 |
“It makes a very clear association with being crazy, being a murderer” “If you see the examples in the press: schizophrenic, all the vocabulary used is perhaps very discriminatory and a change should be made in that. Politicians have it, the media have it”. |
Discriminatory behaviours |
16 |
8,38 |
719 |
10,28 |
|
Vertical Gaze |
14 |
7,33 |
587 |
8,39 |
“It is to show the authority and here you will do what we tell you and you will take the pill without giving problems because otherwise”. |
Diagnostic eclipse |
2 |
1,05 |
132 |
1,88 |
“If the GP sees that the person has an obsessive disorder and sees that something comes from something organic, physical, which in principle has nothing to do with it, but can attribute it to the disorder”. |
Autoestigma |
14 |
7,33 |
409 |
5,84 |
“You can’t imagine the years I’ve been blaming myself for being bad and not performing or not getting where I did before”. |
ACTIVISM |
|||||
Positive effects |
55 |
28,80 |
1624 |
23,22 |
|
Wellbeing |
43 |
22,51 |
1012 |
14,47 |
“It makes me feel very useful, but useful in society, in life”. “They helped me to first realize that I have a vast peer group and to realize that I am not the cause of my illness”. |
Empowerment |
12 |
6,28 |
612 |
8,75 |
“What we are doing is a necessary step (…) when a person comes out and stands firm, we must also dare to stand up”. |
Strategies |
63 |
32,98 |
2690 |
38,46 |
“I don’t like to be the victim, I don’t like to dramatize too much or put a lot of emphasis on my suffering”. “We actively participate in the talk, so one acts as a psychologist, the other as a patient”. |
First person |
17 |
8,90 |
913 |
13,05 |
“What I have learned and is repeated a lot is that the first-person testimony, the life story, is the best tool to connect with people and thus be able to start raising awareness”. |
Impact |
31 |
16,23 |
1020 |
14,58 |
“And what I loved was to see how the same professionals spontaneously became judges and lecturers of medical malpractice”. “There are many people who want to do it differently, to be more humanitarian, more horizontal, more respectful and to take more into account the opinion and feeling of their patients”. |
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FRANCISCO JOSÉ EIROA-OROSA
Ramon y Cajal researcher accredited as full professor at the University of Barcelo-na. Member of the Monitoring Committee of the Advisory Council on Mental Health and Addictions of the Catalan Government. President of the First-Person Research Group of the VEUS Federation. Activist in Obertament, and in the Catalan Associa-tion of Mental Health Professionals.
feiroa@ub.edu
https://orcid.org/0000-0002-4163-6545
MARIA ROVIRA-GIMÓ
Social psychologist and psychotherapist in training, with experience in various or-ganisations dedicated to social integration.
roviragimomaria@gmail.com
https://orcid.org/0009-0005-1041-8501
ACKNOWLEDGEMENTS
The authors would like to thank all the activists who participated in this study and the association Obertament for their support.
FUNDING
Francisco José Eiroa-Orosa has received funding from the Ministry of Science and Innovation through projects RYC2018-023850-I and PID2021-125403OA-I00. However, the authors are solely responsible for the content and writing of this article.
FORMATO DE CITACIÓN
Eiroa-Orosa, Francisco José & Rovira-Gimó, Maria (2024). Activism against stigma: Exploring awareness-raising activities in the healthcare context. Quaderns de Psico-logia, 26(1), e1963. https://doi.org/10.5565/rev/qpsicologia.1963
HISTORIA EDITORIAL
Recibido: 15-09-2022
1ª revisión: 12-01-2023
2ª revisión: 06-06-2023
Aceptado: 08-09-2023
Publicado: 03-04-2024