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

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. This cross-sectional study was conducted between April to June 2020 in Malaysia. Patients recovered from COVID-19 for at least one 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: Three themes emerged from the interviews: (Ι) experience of stigmatization, (ΙΙ) perspective on disease disclosure, and (ΙΙΙ) suggestion of coping and reducing stigma. The participants expressed their experiences of being isolated, labelled, stereotyped 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 as a mean to stop the chain of virus transmission and while some of them chose to disclose the encountered 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 required the involvement of the government, the public, health care provider, and religious leader. Conclusion: Individuals recovered from COVID-19 and their families underwent experience of 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 the experience and perceived it as method to increase public awareness and thereby reducing 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