Impact of HIV-related stigma on quality of life among people with HIV: evidence from Dar es Salaam, Tanzania

Abstract

HIV-related stigma affects the well-being and quality of life of people with HIV (PHIV). To evaluate the impact of HIV-related stigma on the quality of life among PHIV in Dar es Salaam, we conducted a qualitative study between December 2021 and June 2022. We enrolled participants in the Dar es Salaam Urban Cohort Study who were from the Ilala Municipality of Dar es Salaam. Using a semi-structured discussion guide, three focus group discussions (FGDs) were conducted with the 33 participants. FGDs were audio-recorded, transcribed verbatim and analyzed thematically. The impact of stigma on quality of life was grouped into three themes: (1) health impact manifested as failure to attend clinic as scheduled, poor adherence to medication and appetite and weight loss; (2) psychosocial impact manifested as fear, stress, depression, family instability, limited social interaction and a difficult learning environment and (3) economic impact manifested as denied employment opportunities, loss of job, denied financial support and a lack of economic support. PHIV experience stigma, which affects their economic status, health and well-being. Therefore, strengthening programmes, such as community education, awareness campaigns, peer support groups among PHIV and the establishment of microeconomic groups for PHIV may reduce stigma and improve quality of life.

Introduction

Human Immunodeficiency Virus (HIV) infection is a global health problem affecting 39.9 million people, with approximately 26 million people residing in the African region (WHO, 2024). The availability of efficacious antiretrovirals (ARVs) makes HIV a manageable chronic disease, with the resulting life expectancy of people with HIV (PHIV) now approaching that of people living without HIV infection (Maartens et al., 2014). Despite the presence of efficacious ARVs, PHIV experience HIV-related stigma, which affects their quality of life (Hall et al., 2024; Kilapilo et al., 2023).

HIV-related stigma refers to negative mistreatment and attitudes toward PHIV. Scholars have defined different types of HIV-related stigma, including self-stigma, anticipated stigma, and enacted stigma. Self-stigma occurs when a person internalizes impressions of disgrace, low self-worth, or guilt because of societal discriminatory views of HIV. Anticipated stigma refers to the fear that PHIV will encounter mistreatment from family, friends, and society if their HIV infection is revealed. Enacted stigma refers to negative mistreatment that includes unequal opportunities, denial of healthcare, insults and social exclusion of a PHIV, which negatively impacts adherence to their antiretroviral therapy (ART) and quality of life (Churcher, 2013; Hall et al., 2024; Kilapilo et al., 2023).

HIV-related stigma affects the well-being and quality of life of PHIV. Stigma among PHIV can negatively impact psychosocial well-being, economic status, and access and quality of healthcare (Charles et al., 2012; Ramaiya et al., 2016). Despite different strategies to mitigate the impact of HIV-related stigma, such as the provision of education (Yapıcı & Çağlar, 2024). HIV-related stigma remains an obstacle in the delivery of HIV care and treatment services and has contributed to family instability, divorce, depression, decreased ART adherence, poor virological suppression, increased spread of the disease, and loss of employment opportunities among PHIV (Charles et al., 2012; den Daas et al., 2019; Hall et al., 2024; Sprague et al., 2011; Theilgaard et al., 2011).

Tanzania is among the sub-Saharan African (SSA) countries with a significant HIV burden. Consistent with findings from other settings, studies in Tanzania have shown that PHIV experience multiple forms of stigma: verbal, social, and perceived (Mhode & Nyamhanga, 2016). These include financial distress, divorce, domestic abuse, limited access to healthcare and education, relational mistreatment, and workplace discrimination (Hosaka et al., 2022; Ramaiya et al., 2016; Theilgaard et al., 2011). In 2011, the Dar es Salaam Urban Cohort Study (DUCS) was established as a unique surveillance platform in Dar es Salaam, Tanzania (Leyna et al., 2017). Through DUCS, PHIV receive HIV management, counseling, health education, and support initiatives aimed at improving their economic status, quality of life, and capacity to cope with stigma. This qualitative study was designed to explore the patterns of stigma experienced by PHIV enrolled in DUCS, after a decade of the program’s operation in Tanzania.

Methods

Study design, settings and population

A qualitative exploratory study design was used. A semi-structured focus group discussion (FGD) interview guide was used to explore the impact of HIV-related stigma on PHIV enrolled in the Dar es Salaam Urban Cohort Study (DUCS). The study was conducted from November 2021 to June 2022 in the Ilala district of the Dar es Salaam region, utilizing the DUCS cohort (Leyna et al., 2017). DUCS is a demographic surveillance area cohort study that encompasses all households and individuals in Ukonga and Gongo la Mboto wards of the Ilala Municipality (Leyna et al., 2017). Each household and individual has been registered and given a unique identification number to facilitate the tracking and follow-up of events such as births, deaths, and migrations. The area is served by six health facilities that provide care and treatment for approximately 5,000–10,000 PHIV. As of early January 2023, the data indicate that the DUCS platform had 136,447 residents across 25,485 households.

Sampling and data collection process

A total of 33 adults with HIV aged 18 years and above from the DUCS database participated in this study. The participants were purposively selected from the DUCS database based on the study’s inclusion criteria: a confirmed HIV diagnosis with TB as a secondary infection, documented poor adherence to ART, and high viral load and/or low CD4 cell count. All individuals contacted and who agreed to participate in the study were recruited.

Data were collected between November 2021 and June 2022, using a semi-structured FGD interview guide that was developed based on the published literature and the investigators’ experience on the effects of HIV-related stigma on PHIV (Fido et al., 2016; Kilapilo et al., 2023). The interview guide had topics such as: meaning of stigma, impact of HIV-related stigma on economic, social, and psychological aspects, disclosure status, and strategies to eliminate HIV stigma. Each FGD had 11 participants, and recruitment was discontinued after attaining saturation. Three FGDs were conducted face-to-face, audio-recorded, and each FGD lasted an average of 90 min. The study was approved by the Research Ethics Committee of Muhimbili University of Health and Allied Sciences (Ref. MUHAS-REC-12–2021–921). Data were collected using the FDG guide written in Kiswahili, which is the national language for both participants and primary investigators.

Data were collected from each participant who consented voluntarily to participate in this study after a detailed explanation of the study purpose, how the information would be collected (via audio recording), stored, and disseminated, how confidentiality would be maintained, the risks and benefits of participating, and the right to withdraw from the study.

Data analysis

The audio-recorded data were transcribed verbatim, then thematically analyzed (Fereday & Muir-cochrane, 2006; Swain, 2018). The principal investigator GS familiarized himself with the data context and content by listening to audio recordings. Subsequently, the transcripts were independently read and re-read by individual authors (GS, GMB, MSK, RM, MK, and DTM), before creating a codebook. The transcript files were transferred to NVivo software for coding and organization (Edwards-Jones, 2014). After coding, the codes were discussed, sorted, and grouped and agreement was reached on the coded information by the authors. The discussion process among authors resulted in the improvement of the initial tree codes into sub-themes and major themes. For each theme, representative quotes were recognized and translated into English. Text translation was performed by the translator who is familiar with the language and culture of the participants in collaboration with the authors, whereby agreement was reached by consensus. Both the translator and the authors are bilingual, with fluency in Swahili and English, which ensured accuracy, cultural appropriateness, and consistency during translation (Yunus et al., 2022). To guarantee the validity of our qualitative data, several approaches were used. These included peer debriefing, member verification, triangulation of data sources, and maintaining thorough audit trails throughout the data collection and analysis process.

Results

Sociodemographic characteristics of study participants

A total of 33 participants were enrolled in this study (Table 1), with the majority being female (26; 79%), and the median and mean ages of the participants were 47 and 44 years, respectively (range 21–65 years). Most participants were married (11, 33%), widowed (9, 27%), or single/unmarried (9, 27%), with fewer being divorced (4, 12%). The majority (30; 91%) of the participants received combination therapy with Tenofovir, Lamivudine, and Dolutegravir (TLD). Participants earned their incomes through self-employed jobs (15 small business owners, 3 technicians), and a few had volunteering or contract jobs (4 peer educators, 2 volunteers, 1 driver, and 1 cleaner). The themes for this study emerged out of the thematic network analysis process. In the end, it revealed three themes regarding the effects of HIV-related stigma on the quality of life of PHIV in Dar es Salaam. These were: (1) the health impact of stigma, (2) the psychosocial impact of stigma, and (3) the economic impact of stigma. (Table 2).

Table 1.

Participants' sociodemographic characteristics.

Variable	Category	Frequency (n)
Sex	Male	7
	Female	26
Age (years)	18–25	1
	26–34	4
	35–44	8
	45–55	14
	≥ 56	6
Marital status	Married	11
	Single/Unmarried	9
	Divorced	4
	Widow	9
ART using	TLD	30
	ABC + 3TC + ATV/r	2
	TDF + FTV + ATV/r	1
Economic activity	Small business scale	15
	Peer educator	4
	Technician	3
	Community Health Care Worker	2
	Peasant	1
	Cleaner	1
	Unemployed	4
	Driver	1
	Volunteer	2

Table 2.

Main themes and sub-themes for impact of HIV-related stigma on quality of life among PLHIV.

Themes	Sub-themes	Codes
1 The health impact of stigma	● Failure to attend clinic as scheduled.	● Cannot re-fill on time. (Missing some of their ART re-fill, Missing their re-fill) ● Failure to go to health facility
	● Poor adherence to medication	● Not comfortable adhering to treatment. ● Afraid of swallowing medication ● Failed to swallow medication. ● Improper uses of medication. ● Cannot take medication properly. ● Skipping doses of their ART medication. ● Discourage proper uses of medication. ● Immune system compromised due to stress. ● Loss of weight ● Failure of treatment (Treatment failure, Immune deficiency). ● Drug abuse ● Causes premature death. ● Death due to not taking medication (AIDS-related deaths). ● Mental health problems
	● Appetite and weight loss	● Severe illness ● Difficulty drinking and/or eating
2 Psychosocial impact of stigma	● Fear, stress, and depression.	● Lack of peace of mind ● Fear of their HIV status becoming known. ● confused ● Easily angered/irritable ● Suicidal ideation (thoughts of ending their life, with a plan) ● Thought of dying soon ● Mental stress ● Fear of death ● Feeling useless to their family ● Deliberate transmission of HIV
	● Family instability	● Family instability and conflict ● Marriage conflict ● Very discouraged due to fear of divorce ● Avoiding sharing bed with their partner or spouse ● Isolated from eating together. ● People feared sharing utensils. ● Discrimination by the family ● Not able to enter the main house. ● Isolated and required to sleep in a room without a door. ● Missing support from other people
	● Limited social interaction	● Isolated from social ceremonies (Society discrimination) ● ARV limits the uses of alcohol (Limited lifestyle)
	● Hiding from the public	● Started to wear long-sleeved shirts and trousers. ● Hiding myself ● Wearing hijab afraid of being identified
	● Difficult learning environment	● Isolated by classmates. ● Teased by my classmates. ● Poor school performance due to long term hospitalization
3 Economic impact of stigma	● Denied employment opportunities	● Hard to get employment after disclosure. ● HIV testing as criteria for employment. ● Difficulty of being employed in a private organization. ● Hard to get employment for PLHIV
	● Loss of job	● Stopped attending the workplace (Absenteeism from work due to fear of mistreatment). ● Quitting job. ● Isolated at work.
	● Denied financial support	● Limited opportunities to join microfinance projects. ● Loss of access to loans ● Lack of access to loan ● People not buying from you
	● Lack of economic support	● Economic opportunities for people with HIV given to those without HIV ● Lack of economic support

Health impact of stigma

Analysis revealed that the participants experienced the following negative health impacts:.

(A)#Failure to attend the clinic as scheduled

Participants stated that HIV-related stigma interfered with their ability to manage the disease. They described missing scheduled clinic visits to avoid being seen, which often delayed medication refills and left them without treatment for several days. One participant said;

A neighbor was hiding from us at the clinic while refilling her medication; weeks later, we learned that she was ill and she died soon after. (PHIV, aged 64 years old, widow)

(B)#Poor adherence to medication

Participants noted that stigma often prevented them from taking medication on time, and inappropriate use, particularly during social gatherings, with some choosing to skip their doses entirely on such occasions. One participant commented:

People called us ‘late prospects,’ meaning a person nearly to die. Such discrimination made me lose the will to take my medication, sometimes delaying or skipping it to avoid being seen. (PHIV, aged 43 years old, married woman)

Also, participants emphasized that skipping medication due to stigma leads to worsening of their condition, such as treatment failure, weight loss, engagement in drug abuse, immunocompromised status, premature death, and mental health problems.

If you skip medication, it stops working, your viral load rises, and you become weak. Still, I sometimes skip medication, and it pains me because I know proper use keeps me healthy. (PHIV, aged 46 years old, divorced woman)

(C)#Appetite and weight loss

Participants reported that fear of disclosing their HIV status to relatives had a physical impact on their health. They described worsening conditions, including gastrointestinal problems that made it difficult to eat and take their medication. One participant said;

I couldn’t swallow my ARVs, eat, or drink; I was extremely thin and felt I was going to die soon. (PHIV, aged 52 years old, married woman)

Psychosocial impact of stigma

(A)#Fear, stress, and depression

Participants expressed concern about the impact of HIV-related stigma on their mental health, describing experiences of anxiety, depression, confusion, fear of premature death, and even suicidal thoughts, driven by both the burden of the disease and the fear of being identified as HIV positive by society.

I was slammed, financially ruined, and devastated when my HIV status was revealed; I even felt like drinking poison because the pain was too much. (PHIV, aged 52 years old, unmarried woman)

Additionally, one participant noted that, as a response to the depression, anxiety, and anger caused by their HIV diagnosis, some PHIV deliberately transmitted the virus to others. One participant said.

Some of us deliberately spread HIV out of anger and revenge, since we are asking ourselves, ‘Where did we get this disease’. (PHIV, aged 51 years old, widow)

(B)#Family instability

Participants described how HIV-related stigma affected their families, causing isolation and tension through refusal to share bedsheets, utensils, live together, or eat together. One participant said,

When my husband died, his relatives told me to leave, saying my days were short and I would die soon. (PHIV, aged 50 years old, widow)

(C)#Limited social interaction

HIV-related stigma affected participants’ social interactions and lifestyles, leading them to experience isolation during social ceremonies.

At social ceremonies, they told me not to touch anything or help, fearing I would transmit HIV. (PHIV, aged 51 years old, widow)

(D)#Hiding from the public

One participant also reported that as her health worsened, she began covering her body to avoid being recognized by others. She stated that;

I was very ill, lost weight, and wore a hijab to avoid being recognized. I feared dying but still did not skip my medication. (PHIV, aged 52 years old, married woman)

(D)#Difficult learning environment

One participant reported experiencing a hostile learning environment after her HIV status was disclosed. One described being isolated and teased and isolated by classmates, having many hospital visits, and hospitalization, which led to poor academic performance. One participant said;

Even after teachers explained my HIV status, classmates continued to stigmatize me, leading to poor medication adherence, frequent hospitalizations, and failing my national exams ... (PHIV, aged 21 years old, unmarried woman).

Economic impact of stigma

(A)#Denied employment opportunities

Participants reported challenges in securing employment after their HIV status was revealed. They noted that some private organizations require HIV testing and refuse to hire individuals who test positive. One participant said;

Some organizations require HIV testing during recruitment, and those who test positive are denied employment despite meeting other qualifications. (PHIV, aged 32 years old, unmarried woman)

(B)#Loss of job

Participants reported quitting their jobs because workplace HIV-related stigma disrupted their ARV adherence, worsening their health, while others were stopped from attending to workplace.

I continued suffering and losing weight to the extent that the owners of the company told me not to go to work and should stay home. (PHIV, aged 30 years old, unmarried man)

(C)#Denied financial support

Most participants reported being denied financial support due to HIV-related stigma, including restricted access to loans, exclusion from microfinance groups, and misallocation of loans dedicated to PHIV. One participant said;

Funds meant for people with HIV are given to those who are without HIV, which makes me very angry. (PHIV, aged 51 years old, widow)

(D)#Lack of economic support

Participants also reported being mistreated by employers due to their illness, including denial of regular pay and discrimination for taking sick leave. One participant said;

I stayed home for two months without pay, and my colleagues neither supported me nor checked on how I was coping with the illness. (PHIV, aged 51 years old, widow)

One participant reported that her small business lost customers after her HIV status was revealed.

Do not buy from that shop; the owner is HIV positive, she recalled from her own experience. (PHIV, aged 53 years old, widow)

Discussion

This study explored the impact of HIV-related stigma on the quality of life among PHIV in Dar es Salaam-Tanzania. Following the thematic analysis, the impact of HIV-related stigma was divided into three themes: health, psychosocial, and economic factors. Participants described suffering from self/internalize stigma, such as blaming themselves, not accepting their HIV diagnosis, and isolating from social events. Others suffered from enacted stigma, such as unequal employment opportunities, loss of customers, and being isolated in social events. Self-stigma and enacted stigma may be attributed to fear of not achieving their aspirations in life and a lack of proper HIV education to PHIV and society/community (Hall et al., 2024).

Also, some experiences anticipated stigma in which they did not disclose their HIV positive status to their relatives, family, friends, healthcare practitioners, and their community for fear of being stigmatized. The anticipated/perceived stigma may be caused by fewer coping strategies (Sambayi et al., 2024). Studies reported a high prevalence of perceived stigma among females, since in some societies, females are emotionally unstable and with low self-esteem (Moksnes et al., 2010).

Additionally, our findings indicate that HIV-related stigma harms the health outcomes of participants. HIV-related stigma impacts participants in several ways, including poor antiretroviral adherence, clinic attendance, disease progression, and disease transmission. Due to the HIV-related stigma experienced by study participants, some participants revealed that sometimes PHIV deliberately transmit HIV to other individuals as revenge (Mukerji et al., 2025), avoid taking ARVs, and refuse to attend HIV care and treatment clinics regularly, which caused them to question all the efforts to control HIV, prevent emerging drug-resistant HIV strains, and eliminate HIV. Our findings are in line with other findings reported previously. Mhode and Nyamhanga (2016) reported poor ART adherence and non-disclosure of HIV status caused by stigma (Mhode & Nyamhanga, 2016), others reported about deliberate transmission as revenge (Dejman et al., 2015; Vanable et al., 2006) and adverse health consequences (Ziersch et al., 2021).

Participants expressed that some effects of HIV-related stigma on their health include weight loss; as a result, they hide from the public by wearing full-body clothes that help disguise their identity to avoid contact with familiar people in their community. The results align with those of a previous systematic review, in which adults with HIV experienced restricted social networks and reduced social engagement (Pollak et al., 2024).

This study also found that participants live with fear of their status being discovered, fear of premature death, mental stress, feeling useless and confused, and others experiencing suicidal ideation due to depression. Similar to our findings, done in Tanzania showed that women attending maternal clinics, youth, and adolescents with HIV experience different forms of psychological problems, such as shame (Hanson et al., 2024; Theilgaard et al., 2011) and depression (Hosaka et al., 2022; Ramaiya et al., 2016) also, feelings of post-traumatic stress disorder, loneliness, and hopelessness have been reported as psychological conditions affecting PHIV in Uganda (Nabunya & Namuwonge, 2023). In addition, Dejman et al. (2015) reported that PHIV experience social frustration, anxiety, lack of confidence, and social isolation (Vanable et al., 2006).

Additionally, our study reveals that participants in this study face family instability problems because of their status. Despite the absence of risks, participants are denied eating together or sharing rooms or utensils for fear of transmitting HIV to others. In some families, women who may have been infected by their husbands are blamed for bringing the disease to the family, leading to the death of men in the family (Mukerji et al., 2025). Commonly, the relatives of the deceased husband tend to discriminate against the widow and expel her from the house or family (Mukerji et al., 2025). These findings are in line with those of studies conducted in China, the USA, and Iran, whereby marital problems, lack of family support, and family breakdown were related to HIV stigma (Lichtenstein et al., 2010; Mukerji et al., 2025; Vanable et al., 2006). This study found that family discrimination due to HIV is gender-based, as women are typically the most negatively affected and discriminated against (Mukerji et al., 2025).

Furthermore, this study found that adolescents and youth face discrimination among their classmates. This results in poor adherence to ARVs and poor disease progression, which increases the frequency of hospital visits and hospitalization. Hospitalization can lead to missing classes, eventually resulting in poor school performance. The findings are consistent with the studies conducted in Uganda and Brazil, where orphans experienced a double burden of stigma for being orphans and HIV positive, and were bullied and discriminated against by both students and teachers (Abadía-Barrero & Castro, 2006; Cluver et al., 2008).

In addition, our findings show that participants face economic and financial difficulties. This is caused by unequal job opportunities, denial of loans, rejection from joining microfinance groups, and sometimes difficulty in operating and running a business because people refrain from buying goods and services from their shops/restaurants. A similar situation has been reported in African countries and Iran, where job and employment problems, such as refusal to hire, loss of promotions, and contract termination, and limited finances to meet basic needs and travel costs/fares to attend clinics or schools, affect PHIV more and are associated with HIV-related stigma (Sprague et al., 2011; Vanable et al., 2006).

Finally, poverty and a lack of knowledge about HIV transmission have been connected to HIV-related stigma (Mburu et al., 2013). Evidence-based interventions have been effective in lowering HIV-related stigma among PHIV and improving adherence (Sambayi et al., 2024). Examples of these interventions include the creation of microeconomic groups that serve as a platform for lending money and educating PHIV (Dehens et al., 2018; Nadkarni & Becky Genberg, 2019), as well as peer support groups among PHIV (Mburu et al., 2013; Misutarno et al., 2022), wherein PHIV form groups with the goal of educating and helping one another to copy with the disease and reducing self-stigma.

Limitations

Our study was limited to the urban areas of Dar es Salaam, where the population generally has a higher level of education than rural residents. People in urban settings often have better access to formal education, healthcare services, and awareness programs, which may shape their understanding of HIV-related stigma and influence their willingness to participate in research. In contrast, rural communities may experience stigma differently because of factors such as limited educational opportunities, restricted healthcare access, and deeply rooted cultural beliefs. Urban residents are also more likely to be exposed to the media, public health campaigns, and HIV-related policies, which can impact their attitudes and coping strategies. Because of these differences, our findings may not fully represent the experiences of individuals in rural areas, where stigma may be even more pronounced due to misinformation or lack of support systems. To gain a broader perspective on HIV-related stigma, future research should include rural populations to compare their experiences across different social and geographic settings.

Another limitation of our study may be due to the use of FGD. Provided the sensitivity of HIV in the community, some participants may not express their feelings in the discussion because of fear of stigma and dominant participants during the discussion, especially those who don’t fear stigma; as a result, the findings may lack generalizability.

Conclusion

PHIV experiences self-and social stigma and consequently suffers from health, psychosocial, economic, and physical effects of HIV-related stigma. If HIV-related stigma is not addressed, PHIV are prone to refrain from disclosing their HIV status, fail to attend clinics, fail to adhere to ARVs, die prematurely, deliberately spread HIV, and die by suicide due to overwhelming feelings of being stigmatized and discriminated against. Therefore, strategies such as the provision of education and launching national awareness campaigns should be employed to educate the community and family members regarding the causes, transmission, and prevention of HIV to minimize the impact of HIV-related stigma and improve the quality of life among PHIV in Dar es Salaam. Also, evidence-based interventions such as the establishment of peer support groups among PHIV, economically empowering PHIV through the establishment of microeconomic groups that may provide loans, and adhering by laws that provide equal economic opportunities to all people regardless of their HIV status.

Data availability

The data used to draw our conclusions are available from the corresponding author upon request.