Stigma has significant impacts on patients with mental illness, family members, communities, and healthcare professionals. To date, little research has investigated the types of stigma and corresponding impact in the Indonesian context. Stigma is a worldwide concern that influences people’s illness trajectory, treatment process, available opportunities, quality of life, and recovery outcomes. Our study sought to investigate the types of stigma experienced by people with mental illness and mental health professionals in the Indonesian context. Using a deductive approach (directed content analysis), our findings on the examples of stigma reported were loosely centred around public and perceived stigma, consistent with the types of stigma previously reported in the literature [1, 6,7,8,9,10,11,12,13,14]. However, we identified features of these types of stigma in the Indonesian context, and our study therefore makes a direct contribution to the literature. As described in previous studies [7, 8], stigma is a burden for patients with mental illness that can be intrapersonal (self-stigma), interpersonal or in relationships with other people, and structural or discriminatory stigma relating to exclusionary policies and other aspects of life or systems. Our participants shared their experiences of different types of stigma, along with the corresponding elements, attributes, and features within the unique Indonesian culture and value system.
Perceived stigma from a patient perspective
Many participants described feelings of shame and being rejected and isolated from society, which resulted in feelings of powerlessness. A plausible explanation for this is that patients had internalized stigma (self-stigma) because of negative attitudes and beliefs toward them. Other studies reported that around 40% of people with severe mental illness had high levels of self-stigma [11, 13]. Self-stigma exists when an individual believes negative stereotypes about mental illness and people with mental illness, and feels that these stereotypes apply to them [14]. In addition, almost 70% of patients reported moderate to high levels of perceived discrimination, which has been significantly associated with high self-stigma [11]. Implicit self-stigma appears to be associated with negative outcomes. It has been noted that patients who internalize stigma do not respond as well to evidence-based interventions as those that do not internalize stigma [14]. Self-stigma has been associated with poor self-esteem, hopelessness, reduced self-efficacy, and disempowerment [9].
Furthermore, our participants’ descriptions of these negative feelings indicated they were implicit processes. This means that they were activated automatically and occurred whether or not the individual deliberately endorsed the proposition that mental illness is shameful. For example, a patient with mental illness or healthcare professionals working with that patient may explicitly disapprove of such stigmatization, but implicitly, they may still experience the shame associated with this stigmatization. Attempts to reduce self-stigma should therefore consider these implicit processes [49]. In addition, our findings indicated that many patients were labeled by others as mentally ill. Participating patients expressed feelings of shame, and spoke about how the label of being a “crazy” person made them feel useless and powerless. For patients, hospitalization in a psychiatric hospital can be experienced as disempowering and stigmatizing [15]. Because self-stigma can have negative effects on an individual’s life and treatment outcomes, it is important for clinicians to be aware of the existence of self-stigma, so they can recognize patients’ internalized stigma and address this effectively in treatment.
Public stigma
Public stigma has negative effects on the lives of people with mental illness, and creates barriers to the individual’s pursuit of vocational, housing, and healthcare goals [50]. In addition, public stigma affects living, working, and socializing for people with a mental illness [51]. A similar study found that nine out of 10 patients with mental illness had experienced discrimination [52]. Our study also found that both nurse and patient participants reported that people in the community enacted violence toward people with mental illness. For example, because community members were ashamed and afraid of those with mental illness, they commonly subjected people with mental illness to confinement or “pasung” and seclusion or “seklusi” [19]. Confinement/pasung and seclusion/seklusi have a negative impact on patients with mental illness, and their use has potential to cause physical harm and further psychological trauma [29]. In addition, many Indonesians adhere to traditional causal beliefs of mental illness, and these beliefs may drive mental health stigma [21, 22, 26, 34, 37]. Given that Indonesia is a developing country, it is likely that these traditional beliefs underling mental health stigma are common across rural and urban communities.
Family attitudes
Our findings indicated that stigma related to mental illness also impacted patients’ families. This was consistent with Nurjannah et al. [46], who noted that mental health stigma has negative implications on the health and wellbeing of patients and their families. Various impacts on the families of people with mental illness have been documented, including sleep disorders, alterations in interpersonal relationships, worsening of wellbeing, and reduced quality of life [53, 54]. Further, it has been reported that some families with a relative suffering from mental illness experience shame because other people blame them for being responsible for the illness [24]. A family can also feel ashamed if people in their community know that they have relative with mental illness. Three stereotypes associated with family stigma have been described: shame, blame, and contamination [28]. Our study showed that parents were blamed for their offspring having a mental illness, leading to feelings of shame. It was also noted that family members stayed away from patients when they were in hospital and would not visit them. If nurses conducted home visits, family members denied that they had hospitalized relatives. In addition, we found that family members sometimes perpetrated violence towards relatives who had mental illness. For example, participating patients indicated that families subjected them to pasung/confinement or isolated them in a room (seclusion) because community members ordered them to do so, or because they were ashamed or afraid that the patient would be violent [19, 20].
Professional stigma
Another significant finding that emerged from participants’ narratives was the presence of professional stigma. This type of stigma included stigma that nurses held toward patients with mental illness, as well as their experiences of being stigmatized by others because of their job. Our participants reported that some nurses and hospital staff held stigmatized attitudes towards patients, which was consistent with existing literature. This type of stigma is a major concern for healthcare professionals, especially nurses, as it may result in disparities in healthcare access and treatment, and affect outcomes [55]. A previous study indicated that despite healthcare professionals’ attitudes towards mental illness being more positive than those of the general public, paternalistic or negative attitudes were also common, especially around prognosis and the (supposed) limited possibilities for recovery of people with mental illness [56]. It may also be that nurses and other healthcare professionals continue to misunderstand the causes and symptoms of mental illness, despite considerable experience in this setting. Nurses may also fear mental illness, especially if they believe that mental illness is contagious and can be transmitted like a contagious physical illness [24]. We speculated that such fear and misunderstanding may be a particular challenge in strongly traditional societies such as Indonesia. Our results also showed that nurses felt that they were discriminated against by other (non-mental health) nurses because they worked in a mental hospital. They also felt humiliated when other people called them as “crazy” as their patients. In addition, our findings indicated that nurses and hospital staff used restraint and seclusion because of fear. This was consistent with a previous study that reported staff may use restraint and seclusion when patients are perceived as dangerous [57].
Employment discrimination
Having a secure job provides an individual with status in society. For a patient with mental illness, employment is an important part of recovery. Our findings indicated that patients had experienced stigma in their workplaces, which was consistent with the concept of institutional stigma previously reported. The reports of participants in this study suggested that many employers in Indonesia still have negative attitudes and discriminate against people with a mental illness. Many participants reported being refused work because they had a mental illness. In addition, some were not accepted back to their previous place of employment. A previous study found that employment rates for people with severe mental illness were as low as 4% [10]. Discrimination and stigmatizing beliefs and attitudes make it difficult for people with mental illness to find employment [58]. A study involving people living with schizophrenia found that over one-third anticipated discrimination in job-seeking [11]. Stigma can result in difficulties for people with mental illness entering the competitive workforce. Some employers explicitly express negative attitudes regarding workers with mental illness and may be hesitant to hire them [59]. Having a mental illness may also limit a person’s career advancement, as employers are less likely to offer promotion to this group [60]. In addition, people with mental illness reported being passed over for jobs for which they were qualified or fired because of their illness [60]. Our findings showed that although these studies were conducted some time ago, similar issues continue to be experienced by people with mental illness.
