Stigma: who, how and why?
Drawing upon the themes that emerged from the analysis of the interviews, three main questions can be answered in relation to stigma of mental illness in Malaysia: who, how and what, and grouped accordingly. Firstly, the question ‘who’ refers to the perpetrators, the demography of stigma, and the types of mental illness carrying stigma. Whereas ‘how’ reflects on the stigmatising behaviours (manifestations of stigma and impact of stigma). Finally, the question ‘why’ relates to the causes of stigma. From observation and reporting, stigma occurs as a vicious cycle whereby the different components (who, how, why) contribute to this system and are represented by these seven themes.
The outcome of family, friends and employers being described as the most discriminating parties reinforces findings of other research. Mubarak et al. [
24], Lasalvia et al. [
26,
27], Thornicroft et al. [
25] and Rose et al. [
28] have all demonstrated similar patterns and reports of experienced discrimination. It is, however, a major concern as these main named
perpetrators are exactly the people who usually have (or are in a position to do so) the most meaningful, trustful and influential relationships with the person experiencing mental health problems. Friends and particularly family are the main source of support, with values and beliefs dynamically shared amongst members of the group giving patients a sense of belonging and trust. With our daily activities mostly revolving around the home, social and workplace settings, stigmatising attitudes and discriminatory acts by the key people we interact with in these settings (such as family, friends, employers and colleagues) can instigate perpetual feelings of hopelessness, rejection, distrust, social exclusion and even total isolation.
People with psychiatric conditions often face a challenging time having to deal with their condition and are left even more vulnerable when the people closest to them or most significant in their lives engage in
stigmatising behaviours which exacerbates patients’ negative perceptions of themselves. In this study, the participating mental health professionals cited decreased self-esteem and lack of empowerment as the two most common outcomes of discriminatory attitudes. These feelings reflect the
impact at an individual level and failure to address these issues can in turn lead to wider disempowerment, incapacity and failure to
function within the society. In line with results of Mubarak et al. [
24], this study found stigmatisation taking a toll on patients’ personal independence, social relationships and employability, with Thornicroft et al. [
25], Lasalvia et al. [
26,
27], Rose et al. [
28] and Lauber and Rossler [
19] yielding similar results. These disadvantages may be the consequence of patients being perceived as unable to care for themselves, unpredictable and even aggressive [
21,
22]. However, by limiting patients from these opportunities, stigma is actually reinforced. Accordingly, efforts to transform both mental health policy and care provisions in Malaysia should firmly focus on changing stigmatising behaviours and negative public perceptions of mental health and people with mental illness.
The impact of stigma was found to be most profound and outspoken in patients with a diagnosis of schizophrenia, bipolar disorder and depression, further validating Mubarak et al. [
24], Thornicroft et al. [
25], Lasalvia et al. [
26,
27] and Rose et al. [
28]. These outcomes are not surprising as Corrigan [
13] and Penn et al. [
38] suggested stigmatising attitudes arising from the observable cues of these conditions (both in the private and public sphere). This was also reiterated in this study by the participating mental health professionals who cited evident symptoms and unpredictability as factors for instigating stigma in relation to these three disorders. Such evidence was also found in Chang and Horrocks [
21].
Observations within this theme have also demonstrated perceptions of mental illness arising from what has been referred to as ‘personal weakness’ or ‘supernatural activities’. The Malay community especially has been cited as the group that holds most strongly to this belief, consistent to that discovered by Ng [
20]. This poses an interesting debate as Fabrega [
18] found Muslims in Malaysia to be supportive of mental health patients, attributing psychiatric disorder as naturally occurring and not associated to any moral meaning. In fact, Muslims believe they are responsible for people with mental health issues hereby failure to do so is seen as defying God’s will. With the Malaysian Malays being predominantly Muslims, their beliefs of mental illness do not correspond to those of Islam. This is confounding and further research may be useful in understanding this discrepancy and contextualise it. It also highlights the role of cultural influence on religious practice thus anti-stigma efforts in Malaysia need to take this notion into consideration. Conversely, although the Chinese community in Malaysia has been found to consistently perceive mental illness as shameful and a disgrace [
18,
20,
21], this was not true in the present study as participants reported the Malaysian Chinese society as vigorously advocating for mental health. A concrete example of their initiative is to give public service announcement on a popular Chinese radio channel.
It is desirable that a universal approach to address stigma and discrimination be applied across the ethnic groups in Malaysia. However, this theme also highlights that cultural and ethnic differences need to be taken into account for anti-stigma interventions and campaigns, both within as well as across countries, as evidenced by the work of Knifton et al. [
39] and Lasalvia and colleagues [
27]. Understanding social group norms, values and beliefs is very crucial for contextualisation and tailoring needs-based interventions and campaigns suitable to each context. Therefore, this insight serves as a good platform to understand how best stigma of mental illness can be tackled across the country effectively, both as a whole as well as to different target groups. Furthermore, social capital was found to be a protective factor against stigma [
40] and societies or certain ethnic groups with higher social capital and better social cohesion seemed to respond better to anti-stigma interventions than very individualised societies with lower social capital and social cohesion [
27]. This would explain why certain anti-stigma campaigns or interventions may work in one particular context but not in another.
Special attention should also be given to discriminating behaviours from health staff against patients. Although the number is small, this report affirms the outcome of Minas et al. [
23] that stigmatising attitudes amongst health care workers towards patients are predominant. This is a serious issue as stigmatising behaviour from mental health professionals towards their patients jeopardises the patient-practitioner relationship, trust, adherence to a treatment plan, and subsequent recovery whilst at the same time not only negatively impacting on a person’s life and wellbeing but also on mental health services and the wider health system in Malaysia. In line with Jamaiyah [
31], Mubarak [
32] and Haque [
33] governance of mental health services in Malaysia is necessary, if not critical. Better training and awareness-raising workshops can be utilised as means of education amongst health staff.
Insurance companies too, as cited by participants, play a role in contributing to the debilitating life of a mental health patient. Insurance is an important component in matters such as health and housing. With limited eligibility for insurance, people with mental health problems are yet again left battling the vicious cycle of discrimination and disempowerment. Especially in Malaysia, private healthcare seems a more desirable option for mental illness treatment due to its perceived privacy (and privacy is desired due to fear of stigma). However, without insurance, patients may resort to minimising treatment or even opting out of it. As a result, quite a number of patients do not seek help, are left untreated, and thus reinforcement of stigma occurs.
Interestingly, participating mental health professionals interviewed in this study expressed that they too experienced stigmatisation due to their association to mental ill health and people with mental health problems. Despite not being debilitating, this may still leave an undesirable impression on the field of mental health and mental health practice in Malaysia and, consequently, deterring future generations of good mental health practitioners from embracing their profession. This is an indication of the extent of mental health misconception in Malaysia, which urgently requires mental health advocacy, changes in policy and practice, raising education and awareness, and capacity building in both civil society and the wider health system, as reported by the participating health professionals in this study.
As Thornicroft et al. [
3] argued, stigma in mental health is a consequence of problems of knowledge (ignorance); problems of attitudes (prejudice); and problems of behaviour (discrimination). This rings true for the findings of this study too. Furthermore, Khan et al. [
22] affirmed that full consensus was achieved on lack of awareness and education as the main
cause of stigma in Malaysia. This is followed by negative portrayal of psychiatric conditions in the media that may fundamentally stem from the limited awareness and lack of education. In hindsight, the Malaysian society’s beliefs of mental health are representative of the problems suggested by Thornicroft et al. [
3]. Especially in our current media-driven society, mental health advocacy and education can be disseminated through various forms especially social media. Ultimately, education is key to engaging public’s awareness on mental health and thus contributing towards the eradicating of stigma of mental ill health.
Strengths and limitations of the present study and recommendation for future research
The present study is innovative in a few key aspects. First of all, the paper approached stigma of mental illness from a wider perspective rather than from a specific disorder. As such, mental health programmes can be tailored to suit the most pressing needs of overall mental health care. Subsequently, mental health practitioners were engaged. This enabled the viewpoint on stigma to be more objective and, perhaps, less likely emotionally influenced. Most importantly, this study highlights the very pressing needs of improvement of mental health services especially in relation to needs-based policies, practices and proper implementation and evaluation in Malaysia.
However, the study is not without its drawbacks. As participants were all mental health service providers practising within urban demographic settings, the emerged study findings only apply to these settings in Malaysia. Another limitation is the lack of insight into the Indian community as part of the major ethnic groups in Malaysia. Further in-depth qualitative research addressing other geographical areas (rural versus urban) and insights from all different ethnic groups in Malaysian society would be most helpful in formulating solutions that are not only tailored to the Malaysian context as a whole but also to the more specific geographical, demographical, and ethno-cultural needs to improve mental health services and combat mental illness stigma in Malaysia.
In addressing these gaps, future research is advised to include stakeholder groups in society and the health system such as patients, carers and policymakers. Investigating participants from rural areas is also desirable. Especially with the existing implementation of community mental health care in Malaysia [
31-
33,
41], investigating the extent of stigma within rural society is beneficial as the health care system may be tailored to suit both, urban and rural communities. Furthermore, dissecting the cultural background and examining the differences between ethnic groups in Malaysia may yield better insight into stigma in the country. Ultimately, a review of the strengths and limitations of our current policy and practice is highly useful.