This is the first research, to the best of our knowledge, describing the stigmatization experiences of patients with COVID-19 and their family members. Experience from the time they were suspected of having the disease, seeking care at the hospital until the patient recovered from the disease were explored in the Malaysian context. This study outlined the views of the participants on the stigma experience and their willingness to disclose their illness. Feedback on how to minimize stigma were valuable knowledge for health policy makers in designing policies to combat stigma and support societies recovery from this pandemic .
The experiences of the participants who were isolated, stereotyped and blamed for having COVID-19 were similar to those of people affected by HIV / AIDS and tuberculosis. Such stigma has been correlated with negative impacts, particularly on mental health, and has already become a prominent public health problem [8, 11, 15]. Of concern, patients reported being blamed by a health care provider and their suggestions about the need of health workers to improve knowledge in stigma prevention implied the problem of stigma in health facilities. Stigma in health facilities was not uncommon and was often associated with denial of care, provision of sub-standard care, physical and verbal abuse by the health care providers . In line with the participants’ suggestion, teaching the health care providers about stigma, its manifestations and effect on patients’ health were measures to reduce stigma. Developing the skill of health care providers to work with stigmatized group, engaging them to be in contact with the stigmatized group while delivering intervention to mitigate stigma, and empowering the stigmatized group to improve coping mechanism were approaches in overcoming stigma at health facilities .
Some participants preferred to keep their history of COVID-19 confidential. The reasons for the non-disclosure of the medical history were consistent with the perspective of HIV / AIDS patients, mainly due to lack of understanding and concern about the disease among the public, and the association with stigma experience [2, 17, 20]. COVID-19, a highly contagious and new infectious disease with many unknown areas, may be a leading source of public misconceptions and misinformation which are the key contributor to stigma [2, 32]. Another reason for not disclosing was the concern that they would not be allowed to perform routine tasks such as purchasing groceries, and these concerns were similar to those in previous study . Public understanding and compassion are important in reducing stigma, as some participants suggested.
Lack of knowledge and misinformation are contributing factors to stigma [2, 30, 32]. Reliable information on disease prevention, treatment options, accessibility of health care in plain language should be disseminated in social media by governments, the communities, media, and key influencer (e.g. religious leader) as potential methods for combating stigma [2, 32, 33]. To keep the public abreast of the COVID-19 situation in Malaysia, the Ministry of Health Malaysia (MOHM) produced daily press statement and press conferences, covering statistics of recovered COVID-19 cases, number of newly confirmed case, number of confirmed cases by states and new death cases. Apart from the disease statistics, health advisory were regularly disseminated, including important preventive measures such as the 3C: to avoid crowded places; confined spaces; and close conversations . Based on our findings, information on social stigmatization towards the public was important to reduce its occurrence. In India, the Ministry of Health and Family Welfare has advised the public not to blame the Covid-19 patients; provide support to the patients and family members and not to spread the names or identity of those affected or under quarantine on the social media . The Japan Educational Ministry has warned the education boards over the country to stop discrimination and prejudice against workers exposed to higher risks of contracting the novel coronavirus . It is noteworthy that the MOHM has recently added the mental health and psychosocial aspect in COVID-19 to inform the public on the do and don’ts when interacting with COVID-19 patients or their family members .
Interventions to mitigate infectious disease-related stigma often involving multifaceted approaches and requiring the collaboration of stakeholders from different fields including the government, health care providers, the public and key opinion leaders . The Ministry of Health Malaysia is aware of the importance of stigma associated mental health problem among COVID-19 patients. Stigma reduction was advocated as one of the interventions for mental health support to the affected person, the general public and health care workers were recommended not to define the affected persons as COVID-19 and support them with mental and psychological support .
In the Guide to Prevent and Addressing Stigma, the WHO urged the authorities and media to share sympathetic narratives that humanize the experiences and struggles of the infected patients or family members . As of June 2020, Malaysia has reported a total positive Covid-19 cases of more than 8,000 . The authorities and media may consider inviting patients to share their experience of stigmatization after sufficiently anonymizing their identity. Such interventions were consistent with the suggestions made by some of the participants in this research, whom were willing to share their experience of exposure, diagnosis and their perceived stigmatization experience in the community. As reported in a previous study, dissemination of digital stories using social media may be a feasible way to educate the public, reducing fear and anxiety among the affected communities .
Various interventions have been found effective to reduce stigmatization by the healthcare providers towards their patients . It was previously reported that a stigma reduction educational session targeting health providers may improve their attitude and reduce stigmatization among HIV patients . In China, the stigma reduction program implemented to disseminate stigma reduction messages by popular opinion leaders to other healthcare providers was found to be effective . Multi-faceted approach with establishment of hospital steering committees, staff training using a stigmatization awareness module and hospital policy development could effectively reduce stigmatization towards HIV patients . The MOHM has developed a comprehensive Guidelines of COVID-19 Management in Malaysia, which covered the clinical management of COVID-19 cases, sampling procedure, methods for social distancing etc. . The Ministry Guideline (Annex 33) also contained the message to reduce personal identification of patients with COVID-19 (such as victims) but recognized them as “people who are recovering from COVID-19” . While a targeted educational approach may be the most effective way to reduce stigmatization, familiarization and training of healthcare providers with the existing MOHM guidelines may be practical with the current limited resources.
There were several limitations in this study. The findings of our single center study cannot be generalized to other health institutions. The study was conducted during the country movement control order lockdown period, where most of the work and social activities of the participants remained restricted, and the experience of stigmatization after discharge from the hospital cannot be described in full context. Future research could consider researching on the knowledge level and belief about this disease among the public to identify the knowledge gap and misinformation which in turn would help to address stigma .