The concept of stigma was first introduced by Goffman [1] in 1963. It refers to individuals’ features that make them diminish and unfit for mainstream society. Infectious diseases-related social stigma can be defined as a negative association between a person or group of people who share certain characteristics and a specific disease, leading to labeling, stereotyping, discrimination, and other negative behaviors towards others [2]. This can affect people with the disease, their caregivers, family, friends, and communities [2]. These individuals may experience rejection from their colleagues, leading to disease concealment and avoidance of health-care services, resulting in anxiety, sadness, poor quality of life, and low efficacy of infectious disease outbreak management [2,3]. Stigma can be reflected both in attitudes and experiences. It includes perceived perception of judgment by others, anticipated fear of being biased if their condition becomes known, internalized feeling of shame and self-rejection, application of stigma to oneself, and experienced stigma (exclusion and isolation by other community members or household and discriminatory acts and behaviors) [3,4].

Social stigma seems to be a common feature of different infectious diseases such as human immunodeficiency virus (HIV) and tuberculosis (TB) [3]. Before coronavirus disease 2019 (COVID-19), TB was the leading cause of death from a single infectious agent [5]. Delays in seeking treatment and premature termination of treatment are crucial obstacles to TB control, with stigma being one of the suggested causes [6,7]. Some studies have reported the prevalence and impact of stigma on TB. The first study in 1976 compared employer attitudes toward rehabilitated convicts, mentally ill patients, and TB patients and evaluated effects of stigmatization through questionnaires measuring social distance and employment offers [8]. In 2016, a study conducted in India, among 3,823 respondents from a general population, 73% had stigmatizing and 98% had discriminatory attitudes towards TB patients, reflecting its high prevalence [9].

Since its first report in November 2019, COVID-19 has rapidly spread worldwide through person-to-person transmission. The World Health Organization (WHO) declared it a pandemic in March 2020 [10,11]. Measures of transmission control included lockdown, social distancing, mask-wearing, and respiratory hygiene [12,13]. This global public health emergency has raised some previously discussed stigma-related issues. Although such issues have not been sufficiently explored, there are reports showing that patients often experience social stigma such as discrimination, devaluation, stereotyping, isolation, discrediting, prejudice, humiliation, and/or aggressive attitude [14].

Due to health and other implications secondary to stigma, it is important to assess the stigma felt by patients who have contracted TB and/or COVID-19 to explore its main dimensions and manifestations. Stigma perceived by patients who have experienced COVID-19 and its temporal progression through the pandemic, stigma perceived by different patients with TB before and after the COVID-19 pandemic, and difference perceived by the same individual who has contracted TB and COVID-19 all need to be described. Thus, the aim of this study was to evaluate these topics, exploring experiences of patients with TB, COVID-19, or both TB and COVID-19.

To understand how patients perceived their personal experience of contracting TB and/or COVID-19 in the context of stigmatization, a qualitative research was adopted through semi-structured interviews. Qualitative research “focuses on a phenomenological model in which reality is rooted in the subjects; perceptions; the goal is to understand and find meanings through verbal narratives and observations rather than through numbers.” [15] The base was a phenomenological approach, which allows participants to tell, describe, and articulate their narratives in-depth with greater details about what they had lived through with TB and/or COVID-19 disease-related experience [16].

Participants were recruited with a purposive sampling approach. With this approach, the researcher relies on his/her judgment when choosing members of the population to participate in the study [16]. Inclusion criteria were: (1) at least 18 years old and (2) currently or previously had TB disease (with lung involvement) and/or COVID-19 disease. Infection without disease was not considered.

Participants were identified by searching medical records available in a dedicated TB center (Pulmonary Diagnosis Center of Vila Nova de Gaia, Northern Region of Portugal), including physical and online clinical data. A semi-structured interview guide was developed based on published literature on the theme. It was reviewed by the coordinators (Aguiar A and Duarte R) of this study. The interview included data on demographic characteristics such as sex, age, and education level. HIV status and habits of smoking, alcohol, and drugs were also inquired.

The subsequent interview comprised five open-ended questions, with some short-answer questions integrated for better sequencing (Appendix 1). Explored domains included their experience while ill, focusing on stigma experiences in several contexts; possible life experiences in stigmatizing others (if it had already happened); knowledge and perceptions of diseases and treatment; adherence to treatment; and structural and health systems issues. Participants were also asked to talk freely about their perceptions about stigma and to give recommendations to mitigate it. When applicable, in individuals that contracted both diseases, the experience was compared between them.

Participants were first briefed regarding the aims and purposes of this study. A one-to-one interview with participants was conducted in person or by telephone call according to patients’ preference. It was performed in a consultation room of a dedicated TB center that was previously referred during 1 month in 2022. Participants were allowed to select their ideal time for the interview. Each interview took 20 minutes on average. The conversation was audio recorded using the researchers’ cell phones. It was password protected. Transcripts of interviews were utilized for analysis after being verified for comprehensiveness and completeness. All audio recordings were transcribed accurately verbatim by two researchers (Alfaiate A and Rodrigues R) at the end of each interview period. The interviews were performed in Portuguese and then translated into English by the same researchers who are bilingual.

Content analysis was undertaken by Alfaiate A and Rodrigues R. First, transcriptions were read various times. The protocol chosen for the analysis of interviews was the protocol described by Braun and Clarke [17] (2006) called thematic analysis. Thematic analysis is a method for identifying, analyzing, and reporting patterns (themes) in data. It enables a more detailed structuring of the dataset [17]. Generated themes were compared against the data regularly to ensure that the data saturation point had been reached. The endpoint was reached when data collected were sufficient to account for the emerging themes. Due to personal constraints, three of those who had previously agreed to participate in this study did not attend. Interviews were stopped with a final sample size of nine participants. Agreement about themes and subthemes produced was achieved among researchers.

This study was approved by the Ethics Committee of the Institute of Public Health of the University of Porto, Portugal (reference: CE21196). It was conducted in agreement with the standards of the Helsinki declaration. Before each interview, each participant was informed about the study’s goals and their ability to withdraw at any time without prejudice. Written informed consent was collected. The respondent’s information was kept private. No data that might be used to identify a participant was provided.

To the best of our knowledge, this is the first qualitative study presenting stigma experiences of patients with TB and/or COVID-19 in Portugal, comparing them and analyzing temporal progression of this disease’s related stigma.

The conceptualization of stigma recognizes four components (anticipated, perceived, experienced, and internalized stigma) that could interact with each other’s [4]. Based on interviewees’ answers, all these components of stigma were addressed by respondents.

Previous studies have identified several factors contributing to the stigma associated with infectious diseases, such as people’s knowledge, distribution of myths and stories by the mass and social media, and psychosocial variables such as risk perception and fear of being infected [18].

Aspects found in these interviews regarding TB, including social stigma, discrimination, and exclusion, have already been reported in the literature [19,20]. In a qualitative study on 410 pulmonary TB patients, the prevalence of perceived stigma among them was 57.1% [19]. In another evaluation in 2021, having TB and being ‘on treatment’ were often experienced as disruptive. In addition to incapacitating symptoms, side effects, and stigma, many participants also had to balance income loss or reduction, unstable housing, social isolation, worsening mental health, and injured relationships [20].

Among studies conducted on COVID-19-related stigma, few qualitative studies were found. One study found that after 30 COVID-19 survivors were interviewed in November 2020, COVID-19-related stigma was prevalent [21]. The commonest forms of stigma were social rejection and labeling, consistent with our results. Similar findings were described by another qualitative study which indicated that survivors of COVID-19 experienced suspicion and isolation by the community [22]. COVID-19-related stigma might be attributed to the unpredictable nature of the virus, perceived risk of infection, and fatality.

Our results also resonate with habitual kinds of stigma stated by other infectious disease survivors [23]. During our interviews, we discovered that several COVID-19 participants’ stated experiences were identical to those of TB patients. Discrimination was aided by social separation, frequent hand washing, public usage of face masks, and increased ventilation in indoor settings. Although the stigma associated with pandemics is a well-known phenomenon, due to its contextual character, the manner in which it manifests itself may vary depending on the culture in which it exists [24]. In our study, stigma towards COVID-19 was described as decreasing over the months of the pandemic evolution. Although this pseudo-normalization of some preventive measures and actions could be transposed to other respiratory infectious diseases, this was not entirely true for our respondents regarding TB. A largely negative and stigmatizing connotation is still attributed to TB. There are serious outcomes of health-related stigma and discrimination. Stigmatizing language found in our interviews such as “tuberculous person” has also been used during the current pandemic as “corona case.” [23] Such judgmental terminologies can influence thoughts and attitudes through diseases. Besides, stigma experiences could affect individuals’ attitudes toward their illness and commitment to care. All participants complied with the proposed measures. However, COVID-19-related stigma can be disadvantageous to early recognition and treatment as it inhibits health-seeking behaviors, weakens adherence, leads to mental problems, and eventually undermines efforts to neutralize the pandemic [23]. The same applies to TB, where the stigmatization attached to the disease and the discrimination against those affected are described as obstacles in the “end tuberculosis strategy” of WHO [7,25].

Delayed infectious diseases diagnosis has been associated with more severe disease, while late notification of an infectious patient can enable a fast spread in the population. The issue of non-disclosure was commonly reported during the outbreak of COVID-19 [14]. When people avoid groups or geographic areas related to infectious diseases, this can pose significant economic losses. Thus, stigma is more than a simple negative outcome of infectious diseases [18]. Misconceptions regarding the etiology, transmission, and outcome of TB have been commonly described in the literature [26,27]. They are major contributors to stigma. They were found in our study. For COVID-19, it is harder to recognize as adjustments in disease knowledge are still emerging. However, interviewees denoted a higher information availability about COVID-19 than for TB. Undeniably, respondents gave particular importance to education for both diseases. Education, clear and honest communication, and the use of non-discriminatory language have the potential to significantly improve the knowledge, attitudes, and behaviors related to COVID-19 and TB and reduce stigma [4].

This study has some limitations. We decided to employ convenient sampling, which could lead to research bias. Although infected people and contacts were excluded from our study, the perceived stigma might have affected them as well. As this was a qualitative study that concentrated on respondents’ perceptions, a mixed research approach could provide a fuller appraisal of the topic. Results of our population study are not generalizable. Nonetheless, this study delineated opinions of participants on their experience of stigma. The comment on how to decrease stigma represents a valuable knowledge for health policymakers to develop strategies for preventing stigma. Furthermore, continuous reporting of stigma confirms its existence and dimension. Respondents’ narratives in this study are compatible with existing literature.

In conclusion, disease’s stigma is a social process set to reject those who are considered to be a likely source of illness. It may present a danger to society. De-stigmatization of respiratory infectious diseases is therefore essential to reduce the level of non-disclosure, transmission, and discrimination with an increase in disease awareness among communities. Dissemination of knowledge and speed of transmission of COVID-19 contributed to stigma decline concerning this disease. For TB, there are still ingrained barriers that sustain a deep-rooted stigma, which should be addressed and deconstructed.