Edited by: Diego Ripamonti, Papa Giovanni XXIII Hospital, Italy
Reviewed by: Cyrus Mugo Wachira, Kenyatta National Hospital, Kenya; Jerry Ninnoni, University of Cape Coast, Ghana; Nelsensius Klau Fauk, Torrens University Australia, Australia
This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
The pervasiveness of HIV-related stigma and discrimination, and its consequences on HIV prevention and treatment, have been well documented. However, little is known about the lived experiences of HIV-related stigma and its effects among the general adult population living with HIV in rural African settings. This study set out to explore this knowledge gap.
From April to June 2018, we conducted in-depth interviews with a convenience sample of 40 adults living with HIV aged 18–58 years in Kilifi, Kenya. A semi-structured interview guide was used to explore experiences of HIV-related stigma and its impact on these adults. A framework approach was used to analyze the data using NVIVO 11 software.
Participants reported experiences of HIV-related stigma in its various forms (anticipated, perceived, internalised, and enacted), as well as its effects on HIV treatment and social and personal spheres. The internalisation of stigma caused by enacted stigma impacted care-seeking behavior resulting in worse overall health. Anxiety and depression characterized by suicidal ideation were the results of internalised stigma. Anticipated stigma prompted HIV medication concealment, care-seeking in remote healthcare facilities, and care avoidance. Fewer social interactions and marital conflicts resulted from perceived stigma. Overall, HIV-related stigma resulted in partial and non-disclosure of HIV seropositivity and medication non-adherence. At a personal level, mental health issues and diminished sexual or marital prospects (for the unmarried) were reported.
Despite high awareness of HIV and AIDS among the general population in Kenya, adults living with HIV in rural Kilifi still experience different forms of HIV-related stigma (including self-stigma) that result in a raft of social, personal, and HIV-treatment-related consequences. Our findings underscore the urgent need to reevaluate and adopt more effective strategies for implementing HIV-related anti-stigma programs at the community level. Addressing individual-level stigma will require the design of targeted interventions. To improve the lives of adults living with HIV in Kilifi, the effects of HIV-related stigma, particularly on HIV treatment, must be addressed.
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Stigma is one of the major social determinants of health that has been described as a ‘hidden’ burden of disease (
HIV-related stigma and discrimination or the devaluation and rejection associated with an individual’s HIV diagnosis is a human rights violation (
While much attention has been focused on stigma, even becoming the focus of the World AIDS campaigns for 2002–2003, HIV-related stigma persists in sub-Saharan Africa (SSA) (
a) Explore the lived experiences of HIV-related stigma among adults living with HIV in a rural Kenyan setting – Kilifi; and
b) Understand the effects of HIV-related stigma on disclosure, ART adherence, mental health, and the social interactions of these adults.
We describe study methods and findings in accordance with the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist (
This study was conducted in Kilifi County – coastal Kenya, through the Centre for Geographic Medicine Research-Coast (CGMR-C), Kenya Medical Research Institute -Wellcome Trust Research Programme (KEMRI/WTRP), between April and June 2018. Kilifi County is one of the six counties in Kenya’s Coastal region and among the poorest counties in Kenya (
Participants were 40 adults aged 18–58 years old, living with HIV and attending an HIV care and treatment clinic at the Kilifi County Hospital: a teaching and referral hospital. These adults were identified using records from a larger research project conducted at this health facility aimed at understanding important outcomes in adults living with HIV like health-related quality of life, HIV-related stigma, and mental health outcomes. The larger study recruited a total of 450 (79.1% female and 20.9% male) adults 18 to 60 years, with confirmed HIV-positive status and on antiretroviral treatment from the HIV clinic at the Kilifi County Hospital (
Data was collected through face-to-face in-depth interviews with individual participants lasting 30–45 min. A semi-structured interview schedule (see
Data were managed and analysed using Nvivo software (version 11 Pro, QSR international). Audio-recorded interviews were transcribed verbatim by our experienced team of transcriptionists at the department, who are also fluent in Kiswahili, removing all personal or identifying information, and then translated into English by experienced translators in the research team. The authors selected interesting quotes, reviewed the English translations for accuracy and uploaded them on Nvivo. Data analysis was conducted by authors (SWW and AA) in the original language – Kiswahili using the framework approach as described by Ritchie and Spice (
Ethical approval was granted by the local institutional review board, Scientific and Ethics Review Unit (SERU; Ref KEMRI/SERU/CGMR-C/108/3594). Besides, authorization to work in the HIV care and treatment clinic was obtained from the Ministry of Health, County government of Kilifi (Ref HP/KCHS/VOL.VIX/65). Potential participants were acquainted with the study objectives and their right to decline participation in the study outright or withdraw consent at any research stage without any undesirable consequence. All participants provided written, informed consent to be part of the study.
Summary of participants’ socio-demographic characteristics.
| Sample characteristics | Frequency (%) |
|---|---|
| Socio-demographic characteristics | |
| Age | |
| Range | 18–58 years |
| 18–24 years | 22 (55%) |
| 25–58 years | 18 (45%) |
| Sex | |
| Female | 20 (50%) |
| Male | 20 (50%) |
| Level of education, OM = 1 | |
| None | 1 (3%) |
| Primary school | 17 (44%) |
| Secondary school | 15 (38%) |
| Tertiary | 6 (15%) |
| Religion, OM = 1 | |
| Christian | 33 (85%) |
| Muslim | 6 (15%) |
OM = Observation with missing value.
Participants described their experiences with various forms of HIV-related stigma in our context. These include enacted, internalised, anticipated, and perceived stigma. These forms of stigma had varying effects on different spheres of life of the participants, as summarized in
Participants shared their personal accounts with HIV-related stigma, which was manifested through various forms of verbal discrimination, such as blaming, humiliation, rejection, and social exclusion, which stemmed from the fear of contracting the virus or interacting with PLWHA. They presented concrete instances of how people with HIV face such stigma. Moreover, the participants elaborated on how their loved ones and community members habitually resorted to name-calling and labeling to demean and belittle PLWHA. Some of the examples included referring to them as cursed, already dead, or close to death, as demonstrated by the following quotes:
Participants’ experience of HIV-related stigma and stigma effects on HIV prevention and treatment.
One respondent expressed frustration at how PLWHA are treated by family members, while acknowledging that living with HIV can be challenging but does not preclude one from studying, working, or leading a fulfilling life. He also stated that PLWHA can live productive lives just like anyone else, but require support and understanding from others in the community to do so.
Respondents described how they were ostracized from social activities and how physical contact with them was avoided, especially by HIV-negative family members. This was due to misinformation and the belief that HIV could be transmitted through casual contact.
Other forms of exclusion in the community included denial of employment and educational opportunities as a result of one’s HIV status, which resulted in a loss of economic security as PLWHA struggled to find work:
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Discrimination was also evident in the school setting, owing to inadvertent disclosure by classmates. Because they were HIV positive, their classmates declined gifts, and their deskmates avoided contact by not sitting next to them.
Participants admitted that they had internalised fears, social attitudes, and self-discriminatory behaviours at some point in their lives. They reported psychological difficulties such as low self-esteem, sadness, mood swings, anxiety, and depression, often leading to thoughts of suicide. They found it hard to accept their HIV status, making it difficult for them to disclose their status, adhere to their antiretrovirals, and engage with others in the community. Due to internalised stigma, they experienced self-loathing, hopelessness, and a lack of self-confidence. Additionally, they described feeling unworthy, which negatively affected their relationships with loved ones.
Internalised stigma has also been linked to psychological distress, which can negatively impact a person’s overall well-being, leaving PLWHA confused and unsure of why they were taking their ARVs, leading to ART non-adherence:
Participants described how PLWHA internalizing stigma by repeatedly focusing on negative thoughts and experiences could cause additional distress and potential harm. Individuals may feel overwhelmed by their negative emotions as a result of their feelings of discrimination and isolation, making them more prone to suicidal ideation as a way out of their suffering and relieving the burden on their families:
Prior negative stigma and discrimination experiences prevented PLWHA from socialising and associating with others in their social circle. They were also excluded from potentially beneficial support groups. This self-exclusion made it difficult for PLWHA to connect with others who had similar experiences and could offer emotional support, guidance, and practical help.
A participant recounted a personal experience she had when she was in primary school. She had not disclosed her HIV status to her classmates at school, but whenever they discussed HIV, they would stare at her because of her physical appearance (skinny), making her uncomfortable and self-conscious, and she eventually began to isolate herself from her peers and spend time alone.
Furthermore, dealing with a personal and chronic health condition such as HIV can made it difficult for one to concentrate on studies as the resulting thoughts and concerns were a distraction, making it challenging for one to pay attention to what was being taught in class. Internalised stigma affected learners’ concentration at school, impeding their learning experience, as illustrated by the following quote:
A participant reported having conflicting feelings about how to deal with forming social relationships while concealing their HIV status and avoiding the spread of the HIV virus:
Fewer participants expressed concerns about anticipated stigma, including the fear of negative attitudes and actions towards PLWHA, such as gossip, loss of relationships, and lack of social support. This fear of stigma acted as a hindrance to engaging in care, leading to behaviours such as avoiding clinic visits to avoid being seen, partial or complete non-disclosure of HIV status, hiding medication, and seeking treatment at distant facilities. Moreover, some participants refrained from disclosing their HIV status to family and close friends to avoid losing social support. Participants believed non-disclosure was the best way to avoid the expected negative social consequences, such as gossip and humiliation.
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A participant reported having concerns about disclosing her HIV status to her children or family, as this could affect the parent–child emotional bond making it difficult for her to receive the social support and care she needs.
A participant reported struggling with the difficult decision of whether or not to disclose her HIV status to her employer, citing the complex and sensitive nature of the issue that requires careful consideration of the potential risks and benefits of disclosure. She is concerned about potential discrimination or losing her job and is unsure whether her employer will still accept her after she discloses her HIV status:
The apprehension of facing stigma impacted participants’ willingness to disclose their HIV status, seek care, and adhere to antiretroviral therapy (ART). To prevent inadvertently revealing their seropositive status while seeking HIV care, participants adopted coping mechanisms like seeking treatment at faraway locations, declining clinic-offered incentives, avoiding services exclusively for PLWHA, or avoiding care altogether. One participant mentioned feeling embarrassed and, hesitant to disclose their HIV status.
Living with HIV can be a sensitive and personal matter, and it often carries a lot of social stigma and discrimination. According to a participant, PLWHA are skeptical about disclosing their HIV status to people who are not HIV-positive for fear of being judged, rejected, or discriminated. They are only free to disclose their HIV status to other PLWHA because they are similar to them and would understand them better:
According to one participant, some PLWHA started refusing clinic-offered incentives such as mosquito nets and water jerry cans because they did not want to draw attention to themselves as HIV-positive. This exemplifies how stigma can affect the behavior and choices of PLWHA:
A patient expressed feelings of embarrassment or shame at being seen taking her ARVs or attending an HIV clinic. As a strategy to avoid anticipated stigma, she hides her medication and takes it in secret. This can result in her missing doses or not taking her medication at the correct time, which can negatively affect her health.
Due to fear of stigma, some PLWHA were afraid of second-hand disclosure because they wanted to keep their status a secret from others. They felt more comfortable traveling long distances to get medication refills, in order to avoid the risk of being seen at their local clinic and having their status revealed. Others opted to hide while ingesting their ARV’s for fear of inadvertent disclosure.
A participant describes avoiding being near designated PLWHA areas (rooms and benches) at the healthcare facility because doing so could result in the inadvertent disclosure of their serostatus.
Respondents revealed that if a person believed that taking medication made them stand out or drew attention to their HIV status, they avoided taking their medication to blend in or fit in with the group and pass as healthy or normal like other HIV-negative members of society. They fear being identified as taking ARVs. As one participant stated:
Finally, participants recounted experiences where they or their children were stigmatized, revealing their apprehension about HIV-related stigma. Family members, friends, and community members were the most common perpetrators of this perceived stigma. For instance, one participant explained how parents would prevent their children from socialising with HIV-infected peers in their neighborhood due to a lack of understanding and fear of HIV transmission. Additionally, some participants shared that their friends were cautioned against touching them to avoid contracting the virus. These participants’ fears of discrimination due to their HIV status included exclusion from social activities, being unable to share food, isolation, and a spouse’s refusal to share the same bed after diagnosis. They also worried about the potential consequences of their HIV status being exposed publicly due to gossip and third-party disclosure. These anxieties were reported as barriers to some participants disclosing their HIV status and adhering to their medication regimen. Participants also expressed concern about missing job opportunities, leading to a loss of income and the ability to contribute to society.
Participant narratives revealed their concerns about being excluded from what others were planning, having fewer social interactions, and losing friends. The following quotes are illustrative:
Participant fears also centered on marital conflicts for the married and loneliness, compromised intimate relationships, and diminished sexual and marital prospects for the unmarried, robbing them of the chance to live a normal adult life in which they could have their own families and a social support system. In addition, some participants do not disclose their seropositive status. Marital conflicts arose post-diagnosis, after their partners found out about their seropositive status:
A participant opined that if a parent is unable to meet the needs of their children, the children may begin to resent or dislike them. Children may feel neglected, frustrated, or angry if the parent is no longer able to meet their basic needs due to financial or other reasons as they used to do before their HIV diagnosis:
Participants’ narratives also highlighted HIV-negative individuals in society not wanting to come into contact with PLWHA by not wanting to touch their clothes.
Participant narratives also revealed fears of missing employment opportunities, thus losing out on means of earning a living and being productive members of society.
Four decades into the HIV epidemic, HIV-related stigma is still of significant concern and has detrimental effects on the lives of PLWHA. This qualitative inquiry explored the experiences and effects of HIV-related stigma on the lives of adults living with HIV in a rural setting in coastal Kenya. Despite numerous efforts to eradicate HIV-related stigma, negative beliefs, the fear of contagion, and misconceptions about HIV are still prevalent in this setting, as described by participants’ diverse experiences. Our findings concur with a study in Vietnam (
We discovered that understanding HIV-related stigma manifested as enacted, internalised, anticipated, and perceived stigma, an approach that has been applied in other settings (
Internalised stigma was experienced as feelings of shame for being infected. Participant narratives revealed the manifestation of internalised stigma as feelings of self-hatred, hopelessness, and worthlessness resulting in self-isolation, exclusion, and several accounts of participants living with a death wish waiting to actualise their suicidal thoughts. The internalisation of stigma was mostly among PLWHA who had low self-esteem and found it difficult to accept their HIV-positive diagnosis resulting in ART non-adherence. Internalised stigma was prevalent among PLWHA who lacked a support system that accepted their HIV-positive status. The internalisation of stigma has also been shown to affect learner’s concentration at school, thus impeding their learning experience (
In the present study, participant narratives clearly describe the contribution of internalised HIV-related stigma to mental health issues, notably low self-esteem, self-reported diagnoses of mood disturbances, intrusive thoughts and anxiety, and depression marked by constant suicidal ideation, which they framed as problematic and is consistent with other studies among adolescents (
Anticipated HIV-related stigma has been theorized to predict medication non-adherence (
Similarly, our findings are congruent with previous research that the link between medication non-adherence and anticipated HIV-related stigma may result from PLWHA living with fear or anxiety and worrying that medication adherence will lead to inadvertent disclosure of their HIV status (
In these narratives, perceived stigma significantly impacted PLWHA’s social interactions. Participants spoke of strained relationships with children due to their inability to meet all basic needs as they did before their seropositive diagnosis. Our findings supported a link between perceived stigma and mental health challenges. One participant mentioned external pressure to marry, but he perceived his HIV-positive status as a barrier to marriage. He had only disclosed his status to his mother because he considered it a secret. The relationship between perceived stigma, and status non-disclosure has been reported elsewhere (
This qualitative study aimed to provide a contextualized, detailed and rich account of HIV-related stigma experiences and its effects on ART among adults. However, the current study’s findings should be interpreted in light of some limitations. First, because the study was qualitative, we cannot generalize its findings to other resource-constrained settings because data were collected from a single geographical area, and the experiences of HIV-related stigma and its effects are based on the lived experiences of a small number of participants from a specific context. Second, because the study participants were a convenience sample of HIV-positive adults attending an HIV care and treatment clinic, their perspectives may not be representative of the diverse range of experiences of PLWHA in other settings or populations. Third, by using a semi-structured interview guide, we may have missed discussions on other important issues of concern to adults living with HIV. Finally, we only recruited and interviewed adults who were enrolled in care. Findings may not be generalizable to adults living with HIV but not in structured care systems.
Despite the high awareness levels of HIV and AIDS and remarkable increases in ART provision and access in Kenya, adults living with HIV in our setting continue to face HIV-related stigma and discriminatory practices (including self-stigma), albeit to a lesser extent than in the pre-ART era. Participant insights prove that HIV-related stigma negatively influences personal, social, and treatment-related behaviours resulting in deleterious consequences on their physical and mental health. Our findings highlight the urgent need to review, adopt and implement HIV-related anti-stigma campaigns to reduce both individual and community-level forms of stigma. Addressing individual-level stigma will require the design of targeted interventions. The effects of HIV-related stigma, especially on HIV treatment, need to be addressed to improve the lives of adults living with HIV in Kilifi.
The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.
The studies involving human participants were reviewed and approved by Scientific and Ethics Review Unit (SERU; Ref KEMRI/SERU/CGMR-C/108/3594), Kenya Medical Research Institute. The patients/participants provided their written informed consent to participate in this study.
SWW, MKN, and AA conceptualized and gave input to the study design. AA was involved in funding acquisition. SWW and MN supervised data collection. SWW, MKN, and RM collected and curated the data. SWW and AA did project administration and formal data analysis. SWW, MKN, SL, and AA interpreted the data. SWW wrote the first draft of the manuscript. All authors contributed to the article and approved the submitted version.
This work was supported by funding from the Medical Research Council (grant number MR/M025454/1) to AA. This award is jointly funded by the UK Medical Research Council (MRC) and the UK Department for International Development (DFID) under the MRC/DFID concordant agreement. It is also part of the EDCTP2 program supported by the European Union.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
The authors thank all participants who voluntarily took the time to participate in this study. The authors also appreciate the health facility managers and staff at the HIV specialized clinic, Kilifi County Hospital, for their support during the data collection period. Lastly, The authors sincerely appreciate and acknowledge permission from the Director of Kenya Medical Research Institute (KEMRI) to publish this work.
The Supplementary material for this article can be found online at: