Experiences of social stigma among patients tested positive for COVID-19 and their family members: a qualitative study

Abstract

Background Social stigma against persons infected with COVID-19 is not uncommon. This qualitative study aimed to explore the experience of social stigma among COVID-19 positive patients and their family members. Method This cross-sectional study was conducted between April to June 2020 in Malaysia. Patients who have recovered from COVID-19 for at least 1 month and their family members who were tested with negative results, Malaysian and aged 18–65 years old were purposively sampled. Cold call method was employed to recruit patients while their family members were recruited by their recommendations. Telephone interviews were conducted with the participants after obtaining their verbal consent. Results A total of 18 participants took part in this study. Three themes emerged from the interviews: (Ι) experience of stigmatization, (ΙΙ) perspective on disease disclosure, and (ΙΙΙ) suggestion on coping and reducing stigma. The participants expressed their experiences of being isolated, labelled, and blamed by the people surrounding them including the health care providers, neighbours, and staff at the service counters. Some respondents expressed their willingness to share their experience with others by emphasizing the importance of taking preventive measure in order to stop the chain of virus transmission and some of them chose to disclose this medical history for official purpose because of fear and lack of understanding among the public. As suggested by the respondents, the approaches in addressing social stigma require the involvement of the government, the public, health care provider, and religious leader. Conclusion Individuals recovered from COVID-19 and their families experienced social stigma. Fear and lack of public understanding of the COVID-19 disease were the key factors for non-disclosure. Some expressed their willingness to share their experience as they perceived it as method to increase public awareness and thereby reducing social stigma. Multifaceted approaches with the involvement of multiple parties including the government, non-governmental organization as well as the general public were recommended as important measures to address the issues of social stigma.

Stigma toward people with COVID-19 among Bangladeshi older adults

“…Likewise, in two studies from Ghana, patients with COVID-19 reported experiencing stigma and discrimination ( 14 , 15 ). In the study from Malaysia, COVID-19-recovered participants expressed experiencing being labeled and blamed by the people around them ( 16 ). While being novel among the older population, our study extends and supplements previous research among younger adults ( 8 , 11 – 13 ) to enrich our understanding of COVID-19 stigma.…”

“…In another study from Ghana, nearly half of the participants exhibited stigma and discriminatory tendencies toward COVID-19 survivors ( 15 ). In the study from Malaysia, COVID-19-recovered participants expressed experiencing being labeled and blamed by the people around them ( 16 ). For several reasons, mentioned in the following paragraph, we believe that the level of COVID-19 stigma would be higher among older adults, in general, and more especially among Bangladeshi older adults, which warrants a separate study.…”

COVID-19 Information-Seeking, Health Literacy, and Worry and Anxiety During the Early Stage of the Pandemic in Switzerland: A Cross-Sectional Study

“…In this group the perceived susceptibility to the virus may have been low [ 37 ] and resulted in less interest in this topic. Persons who believed to have already had COVID-19 tended not to use personal networks, which might indicate stigmatization of persons with COVID-19 at the early stage of the pandemic [ 38 ]. However, among this group, those with high health literacy used personal networks more often than those with low health literacy, indicating that people with a high health literacy might be more capable to communicate about their disease experience with others.…”

Social determinants and mental health needs of Palestine refugees and UNRWA responses in Gaza during the Covid-19 pandemic: a qualitative assessment

“…However, the nature of the threat that imposed social and physical distancing eroded to a great extent the social cohesion and support that Gazans usually rely on during crisis. Stigma and social isolation, primarily experienced by the COVID-19 survivors and their families, suggests a negative impact on the physical, mental, and emotional wellbeing amongst this group (32,33) and could worsen the psychological wellbeing especially for those who had already mental health di culties prior to the pandemic. A recent study in occupied Palestine found that, in a social distancing era, close social support becomes vital for mental health and exerts a stronger contribution to positive wellbeing than the general sense of belonging to a community and trust in government (34).…”