Problem:

Stigma, a mark of disgrace and disapproval from society, can generate shame and social isolation. Fear of social stigma can lead sick patients to delay or not seek care. During the COVID-19 pandemic, cases of discrimination in Sudan have been reported for recovered patients, their families, and healthcare workers. As of November 2021 over 44,000 cases of COVID-19 had been reported in Sudan, but it is assumed that many additional infections went unreported due to social barriers. We partnered with UNICEF to conduct an interview-based qualitative analysis aimed at identifying and investigating stigma among COVID-19 patients and their families, community members, and health providers to understand the impact of this stigma.

Research:

UNICEF’s on-the-ground team conducted 21 recovered patient interviews, 13 interviews with patient family members, 10 healthcare worker focus groups and interviews, and 25 focus groups and interviews with community members. A total of 69 transcripts were recorded. Questions centered on COVID-19 knowledge, perceptions, actions taken, and suggestions for improvement. Transcripts were analyzed using NVivo qualitative data analysis (QDA) software to identify patterns, drivers, and consequences of COVID-19 stigma on health seeking behavior, psychosocial support, and attitudes. 

Results:

Through transcript analysis, stigma was manifested in three forms:  witnessing stigmatizing actions in one’s community, experiencing stigma firsthand, and perpetuating stigma against others. All four groups referenced witnessing rude treatment, rejection, and isolation targeted at stigmatized groups. Additionally, some healthcare workers, COVID-19 patients, and family members reported their own experience as the targets of stigmatizing behavior. This can lead to feelings of sadness, fear, and isolation. Lastly, enacting behavior or attitudes that perpetrate stigma was most frequently noted in healthcare worker and some community member interviews. It is key to note that a number of participants mentioned stigma decreasing with time. Some recovered patients and family members referenced using their experiences to normalize COVID-19 diagnoses. 

Figure 1.  Prevalence of stigma noted in transcripts: the percentage of each participant category that noted witnessing, experiencing, and perpetuating stigma.

Sample of statements demonstrating witnessing, experiencing, and perpetrating stigma:

“Some families are poor, and the society avoids them. In this case, if they go out to the street, people will throw stones towards them.” – Recovered Patient

“People are afraid of the disease and stay away from the infected people. In one of the districts, people burnt the belongings of the patient.” – Healthcare Worker

“They are almost still afraid of me, and they are disgusted and turn away from me. Even when I come to sit next to my manager at work, he walks away from me and makes me feel as if I am infected with a bad disease.” – Recovered Patient

“We were joking with them and called them Corona.” – Community Member

Feelings of  fear and doubt were present across all groups. Some community members, family members, and even recovered patients expressed doubt about the severity of the origins of COVID-19. Fear was referenced often by members of all groups and included fear of being diagnosed with COVID-19 and fear for the well being of loved ones. 

 “I was keen to apply safety measures because people did not admit that the disease exists.” – Recovered Patient 

“I think it is impossible that coronavirus would spread in Sudan as we have a strong immune system.” – Community Member

“We did not believe at first. We were acting normally” – Family Member 

“I became convinced that COVID-19 is really present after our neighbor was infected with it.” – Community Member

“My sense of fear was not only about the disease itself, but also my fear was for the people that I had mixed with at home and at work, so I was concerned about what would happen to me and to them.” – Recovered Patient

“In the beginning, our family members at our houses were afraid of us. They used to ask us to take off our clothes and keep our stuff outside at the house door and to quickly take a bath and sterilize ourselves before we enter the house.” – Healthcare Worker

 “People are afraid of any patient with symptoms of COVID-19, and nowadays if you sneeze people will run away from you.” – Community Member

Psychological and emotional support was referenced throughout transcripts as subjects noted having received support, provided support, or made suggestions for how support might be improved.  All groups called for continued or increased support for patients and their families. In addition to psychosocial support, some suggested providing financial support and easing the burden of treatment, prevention, and nutritional needs. 

 “We must raise the patient's spirits. We need to ease them with psychological support and reassure them.” – Recovered Patient

 “I felt compassionate toward him. We can help the patient morally and we can provide nutrition and raise awareness of the family without being tough.” – Community Member

Vaccine intentions were probed in about half of the focus groups and interviews.  While responses varied, more respondents expressed support for vaccination than refusal. Across all groups, reasons stated for accepting vaccines included protection of oneself and others and ease of access.  Refusal was most often rooted in fear of potential side effects.

Table 1. Vaccination intentions for recovered patients and family member interviews and community member and healthcare worker focus groups. 

 “I will take it because prevention is better than cure.” – Community Member

“No [I will not get vaccinated], because I knew that vaccination caused problems. I heard it may cause a problem in both women’s and men’s fertility.” – Recovered Patient

“I wasn't convinced about vaccination. They say it causes death.” – Healthcare Worker

Why it Matters:

Qualitative analyses provide firsthand insight to people’s attitudes, impressions, and behavior.  These findings provide insight to UNICEF field staff and emphasize the need for support for community members affected by COVID-19 in terms of both moral and financial resource dedication. Such support mechanisms are critical to individuals and families affected by COVID-19. 

Future studies could experiment with how to replicate the power of personal experience to help combat doubt and stigma. Additionally, behavioral science research could be consulted to explore interventions that partner already existing fears with concrete tools to address and reduce fear.  

Thanks to Lori Foster, Chelsi Campbell, and Caylin Luebeck for their contributions to this research.