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. 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: (Iota) experience of stigmatization, (Iota Iota) perspective on disease disclosure, and (Iota Iota Iota) 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.