Understanding the effect of gender-based violence on uptake and utilisation of HIV prevention, treatment and care services among transgender women: Evidence from the Greater Kampala Metropolitan Area, Uganda

doi:10.21203/rs.3.rs-1514287/v1

Download PDF

Research Article

Understanding the effect of gender-based violence on uptake and utilisation of HIV prevention, treatment and care services among transgender women: Evidence from the Greater Kampala Metropolitan Area, Uganda

https://doi.org/10.21203/rs.3.rs-1514287/v1

This work is licensed under a CC BY 4.0 License

Journal Publication

published 09 May, 2023

Read the published version in BMC Women's Health →

You are reading this latest preprint version

Background

Transgender women (also known as transwomen) are disproportionately affected by all forms of gender-based violence (GBV). A high prevalence of physical, sexual and emotional violence not only predisposes transwomen to HIV infection but also limits uptake of HIV prevention, care and treatment services. Despite the high prevalence of HIV and GBV among the transwomen, there is limited evidence of how GBV affects uptake of HIV prevention, care and treatment services. This qualitative study therefore explored how GBV affects uptake of HIV prevention, treatment and care services among transgender women in the Greater Kampala Metropolitan Area (GKMA), Uganda.

Methods

This qualitative study was conducted among transgender women in the Greater Kampala Metropolitan Area. A total of 20 in-depth interviews, 6 focus group discussions and 10 key informant interviews were conducted to explore how GBV affects uptake of HIV prevention, treatment and care services among transgender women. Data were analyzed using a thematic content analysis framework. Data were transcribed verbatim, and NVivo version 12 was used for coding.

Results

At individual level, emotional violence suffered by the transwomen led to fear of disclosing their HIV status and other health conditions to intimate partners and healthcare providers respectively; inability to negotiate condom use; and non-adherence to antiretroviral therapy (ART). Sexual violence compromised the ability of the transwomen to negotiate condom use with their intimate partners, clients and employers. Physical and emotional violence at community level led to fear among the transwomen to travel to healthcare facilities. Emotional violence suffered by the transwomen in healthcare settings led to limited use of pre-exposure prophylaxis and HIV testing services, denial of healthcare services and delays in receiving appropriate care. The fear of emotional violence also made it difficult for the transwomen to approach healthcare providers for services. Fear of physical violence such as being beaten while in healthcare settings made the transwomen shun healthcare facilities.

Conclusion

The effects of GBV on uptake of HIV prevention, care and treatment services were felt at the individual, community and healthcare settings. Across all levels, physical, emotional and sexual violence suffered by the transwomen led to the shunning of healthcare facilities, denial of healthcare services, delays in receiving appropriate care, and low use of post-exposure prophylaxis and HIV testing services. There is a need to develop and implement strategies/ interventions targeting a reduction in GBV, given its effects on the transmission of HIV. Interventions should include strategies to sensitize communities at accepting transgender women. Healthcare providers should create an environment at the healthcare facilities where transgender women can approach any healthcare provider of their choice so as to increase the uptake of HIV prevention, treatment and care services among transgender women.

Transwomen

Gender-based violence

HIV/AIDS

Uganda

Stigma

Transgender women, defined as individuals who were born male but identify as female (1), are still disproportionately affected by gender-based violence (GBV) and HIV in various regions of the world (2). Globally, it is estimated that more than 19% of transgender women are living with HIV and are 34 times more likely to acquire HIV than the general population. Furthermore, HIV positive transgender women have a higher viral load and consequently higher HIV-related mortality rates compared to non-transgender counterparts living with HIV (5–7). Whereas data on the seroprevalence of HIV among this sub-population in Uganda is unavailable, existing evidence indicates a high risk of acquiring HIV (7, 8), which is attributed to the high levels of gender-based violence including stigma, discrimination, and marginalization experienced by transgender women, that limits their access to HIV prevention, care and treatment services. Additionally, due to low self-esteem and disempowerment transgender women are more likely to engage in high-risk anal sex, which also carries a high risk of HIV transmission (9, 10).

Although data are lacking in many countries, studies show that GBV against the 25 million transgender women around the globe is prevalent, frequent, often severe and gravely under-reported (2, 11). GBV refers to violence perpetrated against an individual based on their gender or gender identity and includes physical, sexual, economic and emotional violence (2, 12). GBV among transwomen is often perpetrated by a variety of actors, ranging from intimate partners, friends, family members, community members, to representatives of the state (e.g., law enforcement officials and health care providers), on the basis of stigmatization of gender nonconformity, gender expression or identity, and perceived sexual orientation (2, 13). Furthermore, transgender women’s economic vulnerabilities, including dependence on their intimate partners and engagement in sex work for survival amidst economic discrimination (14) makes them more vulnerable to GBV (15).

In addition to other negative consequences, GBV has been shown to increase survivors’ vulnerability to HIV through intermediate-risk factors including coerced sex, multiple sex partners, unprotected sex, substance use, poor access to healthcare services, limited access to justice, negative mental health, emotional repercussions such as suicidal behaviors, depression, and social isolation (2, 9). Whereas the link between GBV and HIV infection has been established (12, 15, 16), there is limited evidence on how GBV affects uptake of HIV-related services among transgender women.

A review of literature showed that most estimates of GBV are focused only on the experiences of cisgender, heterosexually identified women, with limited documented evidence among the transgender women sub-population (13). In addition, the effect of GBV on the HIV continuum of care, from HIV prevention to HIV treatment, is not clear. Therefore, this study adopted Levesque’s framework of healthcare access to explore the how GBV affects uptake of HIV prevention, treatment and care services among transgender women in the greater Kampala Metropolitan Area, Uganda. The conceptual framework of access to healthcare by Levesque, Harris (17) conceptualizes five dimensions of healthcare access, which include: approachability, acceptability, availability/accommodation, affordability and appropriateness. It considers the five corresponding abilities of individuals and populations: to perceive, to seek, to reach, to pay, and to engage in healthcare (17, 18). The framework takes into equal account both the health systems and the patient’s perspective with regard to access. It allows researchers to examine barriers of access that happen as a consequence of people’s ability to perceive, seek, reach, pay, or engage and not just the failures of the health system. Levesque’s framework defines access as the opportunity to identify, seek, reach, obtain, or use healthcare and to ensure the fulfillment of the needs for these services (17, 18). Through the dimensions described above, this study examined how GBV affects uptake of HIV prevention, treatment and care services among transgender women in the Greater Kampala Metropolitan Area, Uganda.

Study design and study setting

A cross-sectional study design employing a participatory qualitative approach of data collection was conducted.This study was conducted in the Greater Kampala Metropolitan Area (GKMA). The GKMA comprises of Kampala capital city, Mukono and Wakiso districts. The GKMA covers an area of 970 km². It is the major business and industrial hub of Uganda and contributes over 70 per cent of the country's industrial production and over 60 per cent of the country's GDP. Greater Kampala is the most populated region in Uganda. Wakiso district has the highest population with approximately 2.7 million residents, followed by Kampala district with about 1.7 million, while Mukono district is the 7^th most populated in Uganda, with 701,400 people (19). The GKMA is home to the two national referral hospitals, which is also where the majority of the country’s transgender-friendly healthcare facilities are found.

Study population

The study population included transgender women residing in the GKMA. For the purpose of this study, transgender women were defined as women aged 18 years and above, biologically male at birth but currently identifying as female.

Sample size, sampling procedure and data collection techniques

A total of 20 in-depth interviews (IDIs), 6 focus group discussions (FGDs) and 10 key informant interviews (KIIs) were conducted. We recruited 60 transgender women for participation in the IDIs and FGDs (with 8 participants in each FGD). The actual total number of FGDs, IDIs and KIIs was determined by the principle of theoretical saturation (20). All the participants who were invited to participate agreed to take part in the interviews.

The IDI guide elicited information on the participants’ understanding of GBV and the forms in which it manifests (sexual, physical, emotional, economic), the most common forms of violence they faced, the settings where they experienced each of the forms of violence, pperpetrators and the reasons for the violence and how GBV affected access and utilisation of HIV/AIDS prevention, care and treatment services. Both the KI and FGD guides were used to elicited information on how GBV affects access and utilisation of HIV/AIDS prevention, care and treatment services among trans women in GKMA. These tools were specifically used to obtain information on how GBV affected HIV testing, use of condoms, willingness to enroll and adhere to ART, disclosure of HIV status. We piloted the IDI guide among 2 transwomen and the KI guide among 2 healthcare providers working with key populations in Mbarara City.

All FGDs and IDIs were conducted at offices of key population organisations or key population healthcare facilities in order to ensure privacy and safety of the participants. Snow balling and purposive sampling were used in the selection of study participants. On the one hand, we used partner organizations working with transgender women to identify individuals who could become primary respondents. The primary respondents then helped in enrollment of secondary respondents. It is from the primary respondents that FGD and IDI participants were selected. The transgender women of interest with lived experiences of GBV were identified during the FGDs for inclusion in the IDIs. Key informants, however, were purposively selected based on their positions, experience and presumed understanding of transgender persons, and gender-based violence and how it affects uptake of HIV treatment and prevention services among transgender women. Key informants included policymakers, staff of civil society organizations working with transgender women, representatives of organizations providing access to justice services and transgender-friendly sexual and reproductive health services providers. In order to ensure privacy and confidentiality, interviews were conducted in secluded and convenient places for the respondents. IDI, FGD and KII guides were used to elicit data on GBV experiences and how it affects uptake of HIV prevention, care and treatment services.

Data management and analysis

Interviews were conducted by two researchers who included an interviewer and a note taker. The role of the interviewer was to guide the discussions between the research team and the respondent/s while the note taker’s responsibility was to take field notes. All interviews were recorded using the ICD-PX470 Sony digital voice recorder and later transcribed verbatim by experienced transcribers. We used transcribers who were conversant with both English and the language of the interviews (Luganda). These were also recruited on the basis of excellent computer skills and typing speed, attention to detail, and familiarity with the transwomen community. Transcribers were first requested to transcribe mock interviews that had been recorded by the investigators in order to assess their competences. Upon completion of transcription, transcripts were read by two experienced researchers (MN, JBI and TS) several times, and codes and code book definitions were developed based on the study objectives. In order to make analysis easier, coding of the transcripts was aided by NVivo software. The code reports generated by NVivo were read and discussed by study investigators, and subsequently categorized into the themes that the team agreed upon.

Quality control and assurance measures

Research assistants with a minimum of a bachelor’s degree in public health, social sciences and any other related field were recruited. Furthermore, only individuals with a good command of English and the local dialect (Luganda) were recruited. Prior to data collection, research assistants were oriented through the study protocol, data collection tools, ethics and terminologies/slang used by transgender women. The data collection tools were translated from the original English version into Luganda by skilled translators. Pretesting of data collection tools was done to identify and correct any errors, and to allow the research assistants to familiarize themselves with the data collection tools.

Ethical considerations

Ethical clearance was sought from The AIDS Support Organization (TASO) Research and Ethics Committee (TASOREC/052/2020-UG-REC-009) and the study was registered with the Uganda National Council of Science and Technology (UNCST) (SS557ES). Prior to data collection, the research assistants sought written informed consent from the study participants. All information obtained during the study was treated with utmost confidentiality, and anonymous identifiers were used to mask the identity of the participants. All data, including audio, were kept on password-protected computers. Data access was restricted to only the core research team.

Background characteristics of the participants

The median age of the participants was 22 years, with the majority (76.7%) aged 24 years or younger. Nearly two-thirds (63.3%) of respondents had attained secondary level education. The majority (91.7%) had never married. More than half of participants (60%) engaged in sex work as their main source of income (Table 1).

Table 1: Sociodemographic characteristics of the transgender women in the GKMA

Variable	Freq (N=60)	Percentage (%)
District of residence
Kampala	21	35.0
Mukono	6	10.0
Wakiso	33	55.0
Age groups (years)
18-24	46	76.7
Above 24	14	23.3
Education level
No formal education	1	1.7
Primary	10	16.7
Secondary	48	63.3
Tertiary	11	18.3
Marital Status
Not married	55	91.7
Married	5	8.3
Living arrangements
Family home	14	23.3
Rented home without family members	21	35
Homeless	25	41.7
Religion
Catholic	18	30
Protestant	14	23.3
Muslim	20	33.3
Pentecostal	5	8.3
Seventh-day Adventist	2	3.3
Other	1	1.8
Main source of income
Salaried	9	15
Self-employed	6	10
Casual work	7	11.7
Sex work	36	60.0
Other sources	2	3.3
Sex work (N=36)
Street-based	2	5.6
Entertainment place-based	7	19.4
Residence/home-based	21	58.3
Other	6	16.7
Length of time involved in sex work (n=36)
From 1-5 years	30	83.3
From 6-10 years	4	11.1
From 11-15 years	2	5.6

Effect of GBV on uptake of HIV prevention, treatment and care services

GBV negatively affected access to and utilization of HIV prevention, care and treatment services at individual, community and healthcare setting levels. At individual level, emotional violence towards the transwomen negatively affected disclosure of HIV status, ability to negotiate condom use, and adherence to ART. Sexual violence at individual level affected the transwomen’s ability to negotiate the use of condoms. At community level, both emotional and physical violence had an effect on travel to healthcare facilities. Emotional violence in healthcare settings made it difficult for the transwomen to approach healthcare providers for HIV prevention, care and treatment services. Due to emotional violence, there was limited utilization of HIV testing services and pre-exposure prophylaxis among the transwomen. There was also a delay in receiving appropriate healthcare and denial of healthcare services. Consequently, this made some transwomen shun healthcare facilities. (Table 2)

Table 2: Effect of GBV on uptake of HIV prevention, treatment and care services among transwomen in the GKMA, Uganda

GBV experienced by transwomen	Effect of GBV on uptake of HIV prevention, treatment and care services
GBV experienced by transwomen	Individual	Community	Healthcare setting
Emotional violence: Inappropriate questioning, iciness, blackmail, inappropriate staring, gendered gossip, social disconnection, stigmatization	Fear of disclosing HIV status and other health conditions to intimate partners and healthcare providers Inability to negotiate condom use Non-adherence to ART	Fear to travel to healthcare facilities	Fear of approaching healthcare providers for services Limited use of HIV testing services Limited use of pre-exposure prophylaxis Shunning health facilities Delay in receiving appropriate healthcare Denied health services
Physical violence: Beating, partner fights, mob justice		Fear to travel to healthcare facilities	Shunning health facilities
Sexual violence : sexual assault, rape	Inability to negotiate condom use

Fear of approaching healthcare providers for services

Respondents pointed out that fear of being laughed at by healthcare providers at general healthcare facilities and some key population clinics – which could in the long-run culminate into emotional violence – hindered uptake of HIV prevention, treatment and care services. As a result, some transwomen feared explaining to healthcare providers experiences of violence that would require HIV prevention, treatment and care services.

“There are times we end up fighting, being raped or even having unprotected sexual intercourse. Yet, you cannot go and explain the details to the doctor because you fear that people at the healthcare facility will laugh at you.” (IDI participant)

Some healthcare providers asked inappropriate questions such as whether a transwoman had a wife or not, while others questioned their gender identity. Judgment, inappropriate questioning, and questioning of the transwomen’s gender identity played a key role in deterring some transwomen from approaching healthcare providers for HIV prevention, care and treatment services such as HIV testing, pre-exposure prophylaxis and ART initiation at some general and key population-friendly healthcare facilities.

“First of all, I am a transwoman. I may wear my lipstick and in a weird way, the person (health worker) judges me. How will I start seeking HIV testing services? Yet when I reach the healthcare facility the healthcare provider will start lamenting that you look like a woman? The healthcare provider will start by asking me whether I have a wife or if am married. Because of such questions, I may find myself leaving the facility without taking an HIV test due to fear of declaring my gender identity. You will end up not knowing your HIV status because of the healthcare provider’s judgement of your gender identity.” (IDI participant)

At many general healthcare facilities, healthcare providers resorted to preaching negatively about gender identity as opposed to offering HIV prevention, treatment and care services. Healthcare providers used the bible as a tool to emotionally taunt the transwomen which eventually discouraged them from accessing HIV prevention, treatment and care services at general healthcare facilities. While preaching, some healthcare providers referred to the transwomen as being stupid while others asked them to ‘leave’ their identity so as to be normal people.

“Some doctors think they are very religious, so they at times preach to us instead of offering the services we need. Because we also have bibles on our phones, they don’t need to emphasize that God loves us. Since you know what may happen after reaching the healthcare facility, we would rather refrain and stay home.” (FGD participant, Kampala)

“Some healthcare providers blame them while in the treatment rooms. They keep asking them why they are transwomen. Other healthcare providers just preach to them to leave the transwomen identity so as to be normal people.” (Key informant)

“When you go to a private healthcare facility and express yourself to a doctor, he will start saying you are stupid. Why do you involve yourself in such behaviors (being a transwoman)? If they are born again, they will preach to you yet you have gone for a service. This will in the end divert your purpose of the visit.” (IDI participant)

“Some doctors think they are very religious, so they at times preach to us instead of offering the services we could have gone for. Because we also have bibles on our phones, they don’t need to emphasize that God loves us. Since you know what may happen after reaching the healthcare facility, we would rather refrain and stay home.” (FGD participant, Kampala)

Shunning healthcare facilities

Some transwomen shunned visiting general, private and some key population-friendly healthcare facilities due to fear of being judged by the patients and healthcare providers. Patients and healthcare providers stared and pinpointed them inappropriately. It was also reported that the transwomen risked being beaten up at healthcare facilities due to their gender identity. As a result, some opted not to go to these healthcare facilities for HIV services.

“Sometimes they (patients and healthcare providers) keep blaming and pinpointing us, hence making us feel stigmatized which makes us fail to come and access their medical services.” (IDI participant)

“GBV affects them in so many ways. As you know transwomen are different from the general population so when they come here, fellow patients look at them differently and this makes them uncomfortable.” (Key informant)

“We transgender women face GBV especially when we go to hospitals. When you are HIV positive, sometimes it’s hard when you present as a transwoman when people do not know you. If you are not safeguarded, you may be beaten up and dragged out of the hospital, and followed with insults like ‘are you a woman or a man?’” (FGD participant)

The gendered gossip by some healthcare providers and binary patients which characterized many general healthcare facilities, and at times key population clinics, negatively affected enrollment into care, and the uptake of HIV testing, pre-exposure prophylaxis and antiretroviral therapy. The gendered gossip often resulted in a breach of confidentiality of the transwomen’s health status and gender identity.

“There was a time I visited one of the healthcare facilities. I had gone for medical services because I wasn’t feeling well, and I was in fear. I was served well but after exiting the doctor’s room, he shared my condition with someone who later told all community members in my circles what I was suffering from. I felt bad, I hated that facility and I never went back. It is now two years down the road!” (IDI participant)

“Some healthcare facilities pretend to understand us but they don’t. They are friendly but if you go there, you become the topic [of conversation] after leaving. There was even [a time] when I changed [the health facility] where I refilled my ARVs from, [and] somebody from the community found out from the health worker and I never went back there.” (IDI participant)

“Facility YYY is an LGBT healthcare facility but sometimes I cannot access it because it also serves the general community. When I get there, other patients begin to gossip about my identity. The gossip makes it uncomfortable to access the healthcare facility.” (IDI participant)

“We are violated by these nurses and doctors who are brought to work with a community they don’t understand or have an idea about. At times, when they come for outreach, they resort to gossip about us.” (FGD participant)

“There is a hospital we went to but I will not say its name. I went to that hospital with my lover before I got married. While at the hospital, I explained to the nurse that I was feeling stomachache, but instead of the nurse helping me, she just started screaming while saying: ‘these are the people, they are homosexuals [in reference to the transwoman)] and we even refused this in Uganda!’ Actually, I didn’t get help then we went to YYY [key population-friendly clinic] which is where I got help.” (FGD participant)

“There is a doctor in a certain hospital that gave me an injection. He first asked me how I identify. I told him that I am a female and he said I was lying. When we went to the injection room, he gave me an injection and my hand got swollen. That injection was about to take my life! When I confronted him, he told me he wasn’t aware of the transwomen and that he thought I was a person who was pretending or maybe I wasn’t normal. It affected me to the extent that didn’t want to go back to that hospital. I had it in mind that if I go back, I might face the same doctor.” (IDI participant)

“There is a hospital I entered and they were like ‘please can you stop talking and behaving like a girl!’ It affected me badly but since then I got another healthcare facility. I now go to healthcare facility XXX because healthcare providers there treat us well. They know who transgender women are and how to handle them. Healthcare providers in private hospitals are not sensitized about the transwomen.” (IDI participant)

Delay to receive appropriate healthcare

A few respondents mentioned that some transwomen did not receive timely healthcare due to their gender identity. The study showed it was a common practice for healthcare providers, especially those working in general and public healthcare facilities, to keep asking the transwomen how they benefited from being transgender women instead of cisgender. This led to delays in providing the transwomen with appropriate care.

“Yes, we still have nurses who haven’t embraced who we are, but we just bear with them especially in public healthcare facility YY. The nurses keep asking how we benefit as transwomen, and at times you can send in a client (transwoman) and in the absence of a peer the nurses take their time (take long) to work on them.” (FGD participant)

“They say that life comes first but when you go there (to the healthcare facility), instead of working on you, some healthcare providers first ask you nonsense or call their friends: ‘XX, XX [name of healthcare provider], come and see them. Oh my God, XX, here are the ones who do them [the transwomen].’ If it were you, would you go back for any healthcare service? (IDI participant)

Denied health care services

Respondents reported being denied healthcare services as a result of providers’ transphobia. Healthcare providers in some general and key population-friendly healthcare facilities exhibited displeasure toward the transwomen to the extent of refusing to provide healthcare services to them. In some instances, the healthcare providers referred the transwomen to key population-friendly healthcare facilities, or healthcare providers who they felt were trans-friendly and accommodative.

“You can enter a hospital that is not even aware of transgender persons. Then they ask: ‘who are you? How come you behave like a woman?’ A nurse who is attending to you ends up calling other nurses saying: ‘come and see this “thing” [transwoman], where does “it” even come from?’ Instead of attending to you, they start talking about you and they may even end up not working on you. They may tell you: ‘we don’t have this medicine, try another facility.’ Yet, they have the medicine but they just don’t want to work on you.” (IDI participant)

“Sometimes transwomen are denied treatment by some healthcare workers and are referred to other key population-friendly healthcare facilities. We are also blamed even when we come for treatment. This discrimination leaves us stigmatized.” (FGD participant)

“Some healthcare providers blame them while in the treatment rooms. They keep asking them why they are trans women. Some healthcare providers even refuse to treat them and refer them to those healthcare providers they know to be key population-friendly. Other healthcare providers just preach to them to leave the transwomen identity so as to be normal people.” (Key informant)

Limited utilization of pre-exposure prophylaxis

While at healthcare facilities, patients and healthcare providers inappropriately stared at transwomen which limited them from uptake of pre-exposure prophylaxis. Some healthcare providers also deliberately referred the transwomen to their colleagues, who they felt were more receptive to them. This consequently affected the utilization of pre-exposure prophylaxis among the transwomen.

“When I go for PrEP [pre-exposure prophylaxis], people stare at me inappropriately. At times I feel bad and even lose focus. Sometimes, you may reach the hospital and the nurse looks at you and then she says: ‘we don’t understand you, go to nurse XX. She is the one who works on you people.’ Then other patients will start wondering why? Based on your appearance, other patients will start thinking that you are unique. The only issue is the way healthcare providers push us away in case you find one who doesn’t work on key populations. They at times shout at us so that even the person at a distance will wonder! This at times prevents me from going to the healthcare facility for PrEP.” (IDI participant, Kampala)

Fear to travel to healthcare facilities

Respondents revealed that, at times, they are afraid to travel to healthcare facilities or use certain routes in the community due to fear of or past experience of verbal abuse and physical violence such as being beaten up. Respondents mentioned that they are often insulted by community members and neighbors and stared at inappropriately because of the way they talk, walk and dress, which affects them emotionally, and discourages them from traveling to healthcare facilities.

“Sometimes you may use some routes to the healthcare facility but people in that community may stare at you inappropriately. Then, there are those times when some community members undermine or even abuse us. It is an emotional torture and makes it uncomfortable for us to walk in public when going to seek HIV prevention, treatment and care services.” (FGD participant, Kampala)

“They violate us even on the way to the healthcare facilities. You may be moving then someone behind you starts to complain saying: ‘he is walking like a lady, the “bam-bam” (buttocks) is dancing left and right.’ So, you start wondering how you should walk so as not to attract any one’s attention.” (FGD participant, Wakiso)

Fear of disclosing HIV status and other health conditions to intimate partners and healthcare providers

The respondents pointed out that insults and blackmail by their intimate partners hindered them from taking their pills (ART) at the right time and disclosing their HIV status. At times, some suffered from insults and blackmail on declaring their HIV status to their intimate partners. It was also revealed that some intimate partners disclosed the transwomen’s HIV status and the fact that their partners were on ART which in turn led to stigma. Due to the stigma arising from insults and blackmail initiated by intimate partners, some transwomen did not access healthcare facilities to seek HIV services due to fear of being known.

“I would say you may fear the person [intimate partner] you stay with. Some spy on us [transwomen]. Yet, if you open up to them that you are HIV positive and that you are on ART medication, they may turn violent and may beat you up. He can start blackmailing you at your workplace and declare your HIV status. This can affect your utilization of HIV services.” (FGD participant)

“When these people are in love, they share secrets and when they break up, the partners spill the secret and start publicly insulting each other. Some go ahead to declare how their partners are on ART. They [transwomen] keep on exposing themselves and this creates self-stigma among them to the extent that when they come around, they don’t want their friends to know what they have come to do at the healthcare facility.” (Key informant)

“If going out, I would go with him but he never allowed me to go out alone. I did not want to show him I was on ARVs. But I would take ARVs without his knowledge. I befriended the maids and the askari [security guard] who helped me link up with someone to sometimes deliver my ARVs whenever I needed them from the facility.” (IDI participant)

“I told my friend who was a straight girl, she went to the health center pretending to be the sick one and got me treatment. Though right now I separated from that friend of mine, so it is difficult to use her to get treatment. Since then, at times, I just buy medication if I have money.” (IDI participant)

It was also noted the transwomen sometimes give false information to the health workers in fear of being judged. One of the KIs noted that transwomen do not reveal health conditions to health workers, especially when they have been raped, and the health workers at times offer treatment for a different issue when the real problem is concealed by the victim. Participants also revealed that they fear explaining issues related to their sexual organs because when they do, the health workers ask them a lot of questions and some of them judge them.

“As for sexual violence, some of them get issues but when they come to the facility, they fear to open up that they were raped, they come up with another story for you to treat them. They face a lot of issues in bars.” (Key informant)

Non-adherence to ART

The withdrawal of affection from close relatives and parents negatively affected adherence to ART among the transwomen who were enrolled into HIV care. The withdrawal of affection meant that the transwomen did not have people to confide in, which resulted in a feeling of loneliness and self-stigma which consequently discouraged them from taking ARVs leading to dropping out of care.

“At times you feel lonely, I have no people I can confide in. I have my mother but she accepted me from a distance. She doesn’t want me to be with her. At times I feel like I don’t want to be with anyone. I feel self-stigma to the extent that I no longer want to take my ARVs. Sometimes you get tired of taking your daily ARVs when you have no father or mother you can lean on. They expected a lot from me but they feel disappointed.” (IDI participant)

“Yes, it [stigma] happens a lot, sometimes its self-stigma, sometimes its stigma from fellow patients. That is one reason why there are low retention rates among transwomen.” (Key informant)

The shutting down of communication by intimate partners also played a key role in increasing the transwomen’s non-adherence to ART and dropping out of HIV care. Some respondents noted that emotional abuse from intimate partners in the form of denying them a chance to communicate with friends, relatives and health workers made it difficult for them to access appropriate HIV prevention, care and treatment services. They expressed that this resulted in social disconnection, fear and depression.

“We have experienced challenges with abusive partners. They deny us all our freedom to the extent that you don’t communicate with your friends and relatives, and they won’t let you access ARVs if you are sick. You can’t express yourself because you are like a prisoner. We at times stay with them because of the situation and they take care of us. Some victims end up being mentally affected, getting addicted to drugs, alcohol and becoming socially disconnected and experiencing fear and depression.” (FGD participant)

Inability to negotiate condom use

Nearly two-thirds of the transwomen in our study area engaged in sex work, although they also had intimate partners. Forced sexual intercourse by intimate partners, sex clients and employers limited the transwomen’s ability to consistently use condoms which exposed them to the risk of HIV infection. Respondents pointed out that some of their intimate partners and employers forcefully denied their request to use condoms. Employers at times expected sexual favors in order ensure job security of the transwomen. At times, some of the respondents were pushed or told to shut up when they resisted sex without condoms. In addition, forced sexual intercourse without condoms by sex clients and intimate partners was sometimes followed by physical violence.

“I won’t say that it has never happened, having sex with someone and the condom is off. I didn’t realize the man had removed the condom and when I asked him about it, he held my head, pushed it back and told me to shut up. Then from that moment, should I call it rape?! It must have been rape because it didn’t feel consensual anymore. I was fighting to free myself and he didn’t want to use a condom.” (IDI participant)

“It may happen this way, you may be at work with your employer and you need to be promoted. Then he forces you to have unsafe sex and he refuses to use a condom. You will have nowhere to report and you will keep quiet in order to be promoted.” (FGD participant)

“Some of them [sex clients] do not want to use condoms. I have personally experienced this when having sex with a client. At first, he may be putting on a condom and as time goes on, he removes it. So, you are like why did you remove the condom? And the best thing he (client) will do is push your head back. He commands you to just shut up and continue. What I do is to also kick him off.” (IDI participant)

“You may be having a client or a partner and they tell you they are allergic to condoms. Even us transwomen we are at times not comfortable with condoms. At times they bring us cracks. It depends on the type.” (FGD participant)

Respondents mentioned that when they are arrested sometimes, male police officers forced them to have sex with a promise of releasing them from the police cells. However, even after forcing them into unprotected sex without lubricants, the transwomen are not released which hinders their access to test for HIV at the appropriate time.

“Some male police officers will force you to have sex with them against your will. Some say that: ‘I first want to have sex with you and have a feel of how it is before I release you.’ They “use you” [have sexual intercourse] without lubricants or a condom and even after sexually abusing you, they end up not releasing you even when you need to test for HIV. You can’t report the abuse anywhere and you don’t even know their HIV status.” (IDI participant)

Some reported being raped by inmate partners yet they could not report to police as they felt ashamed. This left them traumatized, and not aware of their HIV status.

“Sometimes in prisons, when they arrest a transwoman like us, they may not know exactly your gender and some inmates just rape you. Sometimes you may fear to disclose it to the police officer that they sexually abused you. It’s shameful, sometimes you keep quiet but when you are traumatized.” (FGD participant)

The current study explored how GBV affected access to and utilization of HIV prevention, care and treatment services. Emotional violence suffered at individual and community levels, and in healthcare settings, had the greatest effect on the utilization of HIV prevention, care and treatment services. At individual level, it resulted in a fear of disclosing HIV status and other health conditions to intimate partners and healthcare providers, non-adherence to ART and inability to negotiate condom use. At community level, it created fear that made it difficult for the transwomen to approach healthcare providers for services, led to limited use of post-exposure prophylaxis and HIV testing services, delays in receiving care, and at times being denied healthcare services. Physical violence, such as fights with a partner and beatings in the community and healthcare settings, resulted in fear of traveling to healthcare facilities, while sexual violence such as rape compromised the ability to negotiate condom use.

This study also revealed that gender-based violence compromised the ability of the transgender women to decide to seek HIV prevention, care and treatment services. Emotional violence, mainly exhibited through insults and blackmail and shutting down communication by intimate partners hindered access to and utilization of HIV prevention, care and treatment services as some intimate partners deliberately disclosed their partners’ HIV status, which consequently affected adherence to ART. Shutting down communication between the transwomen and their friends, relatives and health workers negatively affected uptake of healthcare services which is concerning because friends and relatives play an important role in HIV prevention, care and treatment. They usually play a critical role in reminding individuals living with HIV to take their ART medication, and provide financial, emotional and social support. This kind of support is widely reported as vital in ensuring access to and utilization of HIV prevention, care and treatment services, and associated outcomes.

Sexual violence in the form of rape compromised the ability of the transwomen to negotiate the use of condoms. This study revealed that the transwomen were often unable to use condoms since they were forced into sexual intercourse by their employers, intimate partners, security personnel and sex clients. The fact that they were not able to negotiate condoms use should be worrying due to the known risks of unprotected sexual intercourse. Failure to develop and implement strategies/ interventions targeting a reduction in sexual violence, particularly rape, is likely to contribute to an increase in the HIV prevalence among this sub-group and the people with whom they have sex or are forced to have sex. Sexual violence and its effect on access to and utilization of HIV services is widely documented.

The study revealed that the lack of acceptance of the transgender women by fellow patients at healthcare facilities due to their gender identity impeded their ability to seek HIV prevention, care and treatment services. This manifested itself through beating the transgender women, dragging them out of the healthcare facilities, and inappropriately staring and gossiping, which affected their self-confidence and ability to seek the necessary HIV services. Some transgender women avoided such facilities altogether in anticipation of experiencing emotional and physical abuse while at the facility. These findings corroborate those reported in a qualitative study conducted by Lanham, Ridgeway (21) in Latin America and the Caribbean that indicated inability to seek care among transgender women as a result of the emotional violence perpetrated by fellow patients at healthcare facilities. Ssekamatte, Isunju (22) attributed this violence to the fact that transgender women don’t behaviorally conform to expected gender roles and norms and are therefore prone to transphobia from fellow patients and healthcare providers. Our study highlights the importance of stigma- and discrimination-free healthcare settings when using HIV/AIDs related prevention, treatment and care services.

Our study also indicated that the lack of acceptance of the transgender women by some healthcare providers – for example, preaching and gossiping negatively about their gender identity and HIV status – compromised their ability to seek HIV prevention, treatment and care services. Respondents noted that they refrained from seeking services at healthcare facilities because some healthcare providers referred to them as stupid while others asked them to “leave” their identity and become “normal” people. In addition, transgender women in this study reported breaches of confidentiality about their HIV status and gender identity by some healthcare providers. This emotional abuse discouraged them from not only approaching the healthcare workers, but also trusting them and disclosing vital information required to arrive at proper diagnosis and treatment. Our findings reaffirm those by Ssekamatte, Isunju (22) which reported breached confidentiality in healthcare settings as barriers to utilization of HIV-related services among transwomen sex workers. These findings could be attributed to inadequate training of healthcare providers on sexual orientation and gender identity especially in relation to transgender women, their unique healthcare needs and different forms of GBV, especially those perpetrated within healthcare settings. The findings could also be attributed to the deeply rooted cultural belief about gender that cannot be easily erased except with continued dialogues and awareness sessions about the trans gender identity.

Results indicated that GBV is also linked to unfriendly healthcare facilities. Respondents anticipated being laughed at, being asked inappropriate questions about their gender identity, and abused by healthcare providers if they expressed their healthcare needs, issues and experiences of GBV. This compromised their ability to approach healthcare providers and freely express their issues, which could have blocked their opportunity to seek HIV prevention, care and treatment services in real time. The study also reported instances of deliberate refusal to treat some transgender women where the healthcare providers were condemning them for behaving like girls which later forced them to flee such healthcare facilities. Similarly, a review of existing literature showed discrimination in healthcare settings exhibited through denial of care (2, 22, 23). Such emotional abuse and discrimination in healthcare settings distresses transgender women, ignites self-stigma and affects their self-confidence, which impedes their desire and ability to access appropriate care. In addition, transgender women may lose trust not only in the service providers but also in the services provided leading to a delay in seeking HIV prevention and treatment services (2). There is therefore a need to train healthcare providers in key population healthcare facilities on both intentional and unintentional discriminatory behaviors that are likely to impact on transgender women's uptake of HIV-related services.

At community level, transgender women reported that they were unable to reach/travel to healthcare facilities due to fear of community-perpetrated emotional abuse, exhibited through verbal abuse and inappropriate staring at them. This was because the transgender women’s behavior and dress code defied the societal and gender norms. As a result of this abuse, transgender women were prone to emotional distress, dissociation and social exclusion, which affected their access to healthcare services. These findings concur with those reported in a study conducted among transwomen sex workers in Uganda (22). Communities should therefore be sensitized on transgender identity and different forms of GBV, including non-physical forms such as emotional violence. This will create an enabling environment for transgender women to travel to healthcare facilities for HIV-related services and any other healthcare services needed.

Strengths and limitations of the study

This study demonstrates the lived experiences of transgender women who have suffered the effects of GBV on uptake of HIV prevention, treatment and care services. Besides the effects of physical violence, the study brings to light the effects of emotional and psychological forms of violence which inhibit uptake of HIV prevention, treatment and care services. The names of healthcare facilities have been withheld for ethical concerns. The findings are however limited in terms of geographical space and some of the findings may not be generalizable due to contextual variations.

It is noted that emotional violence is the most widespread form of GBV at individual and community level and, worse, in healthcare settings and that this precipitates fear of disclosing HIV status and other health conditions to intimate partners and healthcare providers, inability to negotiate condom use, and non-adherence to ART at individual level. At community level, both emotional and physical violence instill fear to travel to healthcare facilities. Emotional violence in healthcare settings has a number of effects, including fear of approaching healthcare providers for services, limited take-up of HIV testing and pre-exposure prophylaxis services, delays in receiving appropriate healthcare, being denied healthcare services and shunning healthcare facilities. There is a need to develop and implement strategies/ interventions targeting a reduction in GBV, given its effect on the transmission of HIV. Interventions should include strategies to sensitize communities at accepting transgender women. Healthcare providers should create an environment at the healthcare facilities where transgender women are able to approach any healthcare provider of their choice so as to increase uptake of HIV prevention, treatment and care services among transgender women.

GBV: Gender-based Violence

GKMA: Greater Kampala Metropolitan Area

HIV: Human Immunodeficiency Virus

CSOs: Civil Society Organizations

STIs: Sexually Transmitted Infections

Ethical approval and consent to participate

Ethical clearance was sought from The AIDS Support Organization (TASO) Research and Ethics Committee (TASOREC/052/2020-UG-REC-009) and the study was registered with Uganda National Council of Science and Technology (UNCST) (SS557ES). Prior to data collection, the research assistants sought written informed consent from the study participants. All information obtained during the study was treated with utmost confidentiality, and anonymous identifiers were used to mask the identity of the study participant. All data including audios were kept on password protected computers. Data access was restricted to only the core research team.

Consent for publication

Not applicable.

Availability of data and materials

The data used for this manuscript is available from the corresponding author on reasonable request.

Competing interests

The authors declare that they have no competing interests.

Funding

This study was funded by ACCESS consortium through Frontline AIDS. However, the funders did not play any role in the conceptualization and drafting of the manuscript.

Author’s contribution

MN, TS, AN, LO and RKK conceptualized the study, participated in data collection, analysis and drafting the manuscript. JBI, PO, JK, SPSK, STW, DS and RKM participated in the analysis, and drafting of the manuscript. All authors read and approved this manuscript before submission to this journal.

Acknowledgements

This study wouldn’t have been a success without the dedicated efforts of our research team. We are also grateful to all the staff of CSOs and peer leaders that linked us to our study participants. Special thanks go to Transgender Equality Uganda who commissioned this study and helped in the identification and training of research assistants. We are also indebted to the study participants for sparing their time to participate in the study. Your efforts made the implementation of this study a success.

UNAIDS. PREVENTION GAP REPORT. 2016. [Available from: https://www.unaids.org/en/resources/documents/2016/prevention-gap.
Evens E, Lanham M, Santi K, Cooke J, Ridgeway K, Morales G, et al. Experiences of gender-based violence among female sex workers, men who have sex with men, and transgender women in Latin America and the Caribbean: a qualitative study to inform HIV programming. BMC International Health and Human Rights. 2019;19(1):9.
UNAIDS. Global AIDS report - Confronting Inequalities. 2021 [Available from: https://www.unaids.org/sites/default/files/media_asset/2021-global-aids-update_en.pdf.
UNAIDS. SEIZING THE MOMENT;Tackling entrenched inequalities to end epidemics. 2020.
Sevelius JM, Carrico A, Johnson MO. Antiretroviral therapy adherence among transgender women living with HIV. The Journal of the Association of Nurses in AIDS Care: JANAC. 2010;21(3):256–64.
San Francisco Department of Public Health. HIV/AIDS epidemiology annual report 2008. HIV Epidemiology Section, San Francisco Department of Public Health San …
King R, Nanteza J, Sebyala Z, Bbaale J, Sande E, Poteat T, et al. HIV and transgender women in Kampala, Uganda - Double Jeopardy. Culture, health & sexuality. 2019;21(6):727–40.
Ssekamatte T, Isunju JB, Naume M, Buregyeya E, Mugambe RK, Wanyenze RK, et al. Barriers to access and utilisation of HIV/STIs prevention and care services among trans-women sex workers in the greater Kampala metropolitan area, Uganda. BMC Infect Dis. 2020;20(1):932-.
Poteat T, Ackerman B, Diouf D, Ceesay N, Mothopeng T, Odette K-Z, et al. HIV prevalence and behavioral and psychosocial factors among transgender women and cisgender men who have sex with men in 8 African countries: A cross-sectional analysis. PLoS medicine. 2017;14(11).
WHO. Prevention and treatment of HIV and other sexually transmitted infections among men who have sex with men and transgender people 2011 [Available from: https://www.who.int/hiv/pub/guidelines/msm_guidelines2011/en/.
Winter S, Diamond M, Green J, Karasic D, Reed T, Whittle S, et al. Transgender people: health at the margins of society. The Lancet. 2016;388(10042):390–400.
Leddy AM, Weiss E, Yam E, Pulerwitz J. Gender-based violence and engagement in biomedical HIV prevention, care and treatment: a scoping review. BMC Public Health. 2019;19(1):897.
Wirtz AL, Poteat TC, Malik M, Glass N. Gender-based violence against transgender people in the United States: a call for research and programming. Trauma, Violence, & Abuse. 2020;21(2):227–41.
Hwahng SJ, Nuttbrock L. Sex Workers, Fem Queens, and Cross-Dressers: Differential Marginalizations and HIV Vulnerabilities Among Three Ethnocultural Male-to-Female Transgender Communities in New York City. Sexuality research & social policy: journal of NSRC : SR & SP. 2007;4(4):36–59.
Dunkle KL, Decker MR. Gender-based violence and HIV: Reviewing the evidence for links and causal pathways in the general population and high‐risk groups. American Journal of Reproductive Immunology. 2013;69:20–6.
Li Y, Marshall CM, Rees HC, Nunez A, Ezeanolue EE, Ehiri JE. Intimate partner violence and HIV infection among women: a systematic review and meta-analysis. J Int AIDS Soc. 2014;17(1):18845.
Levesque J-F, Harris MF, Russell G. Patient-centred access to health care: conceptualising access at the interface of health systems and populations. International journal for equity in health. 2013;12(1):1–9.
Cu A, Meister S, Lefebvre B, Ridde V. Assessing healthcare access using the Levesque’s conceptual framework – a scoping review. International journal for equity in health. 2021;20(1):1–14.
UBOS. The National Population and Housing Census. In: (UBOS), U. B. O. S. (ed.) Main Report. Kampala, Uganda. Kampala, Uganda.: Uganda Bureau of Statistics 2016.
Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Quality & Quantity. 2018;52(4):1893–907.
Lanham M, Ridgeway K, Dayton R, Castillo BM, Brennan C, Davis DA, et al. "We're Going to Leave You for Last, Because of How You Are": Transgender Women's Experiences of Gender-Based Violence in Healthcare, Education, and Police Encounters in Latin America and the Caribbean. Violence Gend. 2019;6(1):37–46.
Ssekamatte T, Isunju JB, Naume M, Buregyeya E, Mugambe RK, Wanyenze RK, et al. Barriers to access and utilisation of HIV/STIs prevention and care services among trans-women sex workers in the greater Kampala metropolitan area, Uganda. BMC Infectious Diseases. 2020;20(1):932.
Safer JD, Coleman E, Feldman J, Garofalo R, Hembree W, Radix A, et al. Barriers to healthcare for transgender individuals. Curr Opin Endocrinol Diabetes Obes. 2016;23(2):168–71.

No competing interests reported.

Download PDF

Journal Publication

published 09 May, 2023

Read the published version in BMC Women's Health →

Editorial decision: Major revision
19 Sep, 2022
Reviews received at journal
16 Sep, 2022
Reviews received at journal
18 Jul, 2022
Reviewers agreed at journal
11 Jul, 2022
Reviewers agreed at journal
08 Jul, 2022
Reviewers invited by journal
08 Jul, 2022
Editor assigned by journal
08 Jul, 2022
Editor invited by journal
02 Apr, 2022
Submission checks completed at journal
02 Apr, 2022
First submitted to journal
01 Apr, 2022

You are reading this latest preprint version

Understanding the effect of gender-based violence on uptake and utilisation of HIV prevention, treatment and care services among transgender women: Evidence from the Greater Kampala Metropolitan Area, Uganda

Status:

Journal Publication

Version 1

Abstract

Background

Materials And Methods

Results

Discussion

Conclusions

Abbreviations

Declarations

Ethical approval and consent to participate

Consent for publication

Availability of data and materials

Competing interests

Funding

Author’s contribution

Acknowledgements

References

Additional Declarations

Status:

Journal Publication

Version 1