The median age of study participants for IDIs was 21.0 years. The majority, 90% (20/22) of the participants were aged between 18 and 24 years; 50% (11/22) had attained an ordinary level of education, and 72% (16/22) had never been married. About 50% (11/22) of the study participants did not have any other source of income other than sex work, and 55% (12/22) stayed with a fellow trans-woman. With regard to sex work, 55% (12/22) had engaged in sex work for less than 5 years, and the majority, 41% (9/22) operated from their residences or homes. Less than half of the study participants, 36% (8/22) had ever tested for HIV. (Table 1).
Emerging themes from our data were classified as barriers to access and utilisation of HIV/STI prevention and care services, and coping strategies. The “barriers theme” encompassed the following organising themes; individual level barriers, community level barriers and health system barriers. The healthcare system barriers, unless stated otherwise were evident at both the general (private and public) and key population-friendly healthcare facilities. The “coping strategy theme” encompassed the following organising themes; coping with lack of lubricants and STI drugs and coping with stigma and discrimination. The findings are presented following these themes. (Table 2).
Barriers to access and utilisation of HIV/STI prevention and care services (Table 2).
Individual barriers
Internalised stigma
Internalised stigma among trans-women sex workers was mentioned as a key barrier to access and utilisation of HIV/ STI prevention services. According to the study participants, some trans-women felt once they went out to seek health services, they would not be welcomed by healthcare providers, while others felt that the public would accuse and pinpoint at them as those pretending to be what they are not. Internalised stigma among trans-women sex workers was portrayed in the following forms.
Perception of being viewed as abnormal
This study revealed that some trans-women sex workers suffer from trauma, mainly resulting from the perception of being viewed by the rest of the community as being abnormal. This feeling hindered trans-women from associating with other members of the community, consequently preventing them from accessing information on SRH services.
“When the community around gets to know that you are a transgender, you feel shy to move out of the house; you cannot be bold enough. Whenever you are sick, there is no one you can talk to because of trauma. Now like for my situation, I understand that there are other people who may think that am abnormal and they do not like it. So, I think that is another factor that hinders me from going to those health centres” (IDI participant).
Low self-esteem
Trans-women sex workers found it difficult to identify with their gender identity, sex work occupation and health condition while at healthcare facilities, thereby making diagnosis of SRH conditions difficult. It was also evident that some trans-women sex workers were afraid of mentioning that they had sexual feelings for men and associating themselves with sex work.
“It is difficult to express ourselves while at healthcare facilities. I cannot easily say that I am a trans-woman or even a sex-worker, and that I am suffering from this condition (STI) or that, yet they do not understand who we are. Again, having a low self-esteem because the trans-women are not well recognized as a key population.” (IDI participant).
“Explaining to somebody that you are a trans-woman is not easy. Telling a healthcare provider that “I am a trans-woman, I behave like a woman although I am a man, my sexual feelings are for men, I am only attracted to men, so, I have sex with men and I am actually a sex-worker.” If you say it today, you will also need to explain to another healthcare provider next month. It is not easy!” (IDI participant).
Feeling embarrassed to declare STIs
Trans-women sex workers reported to have feared healthcare providers, felt embarrassed or did not have the confidence to report the STIs they suffered from, while at both general and key population-friendly healthcare facilities, thereby affecting access to SRH services.
“Most Trans-women lack the confidence to express themselves, and fear healthcare providers. If I know that I have STIs like anal warts, I feel embarrassed to tell the healthcare provider what I am suffering from. Therefore, as the trans, we need that confidence to be able to express ourselves and what we are suffering from to the healthcare providers in order to get the treatment we need.” (IDI participant).
Internalised stigma among trans-women sex workers was also highlighted by one of the key informants who mentioned that:
“Trans-women sex workers also stigmatize themselves. They often think that they will be discriminated against while at healthcare facilities. They also at times believe that they will be referred to as homosexuals yet they are not” (Key informant).
Low socioeconomic status
It was evident that many trans-women sex workers have a low socioeconomic status and rely solely on sex work as their source of livelihood. A limited source of income implied that many trans-women sex workers failed to access SRH services at both the general and key population-friendly healthcare facilities due to lack of money to pay for transport and to foot medical bills.
“The first issue is the distance from the healthcare facility. I for example, stay in Buziga [suburb] and the healthcare facility is in Namuwongo [another suburb]. You may think that it is a short distance, but once you’re “broke” [lack of money] you can actually fail to access it. You may also get an STI and fail to get treatment due to lack of money” (FGD).
“Poverty is one of the challenges that hinder trans-women sex workers from accessing HIV/STI services. Some trans-women sex workers claim that they do not have transport to come and access SRH services. So, they would rather sit back and not access the services” (Key informant).
Community level barriers
Transphobia
Some trans-women sex workers were not able to access both general and key population-friendly healthcare facilities due to fear of community perpetrated violence and gossip. Trans-women sex workers were discriminated against by the community because they defied societal expectations such as dress code and behaviour. As a result, many trans-women sex workers tend to socially exclude themselves and only move out of their homes to visit bars at night.
“Some trans-women sex workers fear that they may be attacked by the community because of the way they dress, and of course the society expectation. If you are a man, you are supposed to dress and walk like a man, yet, you know the trans-women dress as females” (Key informant).
“We fear community gossip and sometimes physical assault. Actually, due to fear and community gossip, most trans-women sex travel at night to visit bars. It is rare to find us visiting friends during the day because even gay men do not welcome us. My husband can’t allow any unknown person to enter our house, they are trans-phobic” (IDI).
Health system barriers
Social exclusion and lack of recognition at some key population-friendly healthcare facilities
Trans-women sex workers were branded by healthcare providers at some key population-friendly healthcare facilities as “proud” because they did not want to associate, and had a poor relationship with other members of key populations, particularly the lesbians, gays and female sex workers. The poor relationship with other members of the Lesbians, Gay, Bi-sexual, Transgender and Intersex (LGBTI) community mainly stemmed from competition for sex clients and wanting preferential treatment while at healthcare facilities. Wanting special treatment was irrespective of whether it was a general, key population-friendly or an NGO-managed healthcare facility. Failure to get the preferential treatment at the different healthcare facilities stopped some of them from seeking HIV and other STI prevention services.
“They (trans-women sex workers) do not want to associate with the rest of the LGBTI community. They always want special treatment yet the LGBTI community here does not recognize them”. (Key informant key population friendly healthcare facility).
“Trans-women sex workers always want to be treated in a very special way when they come to the healthcare facility. They always want to be served faster than other key populations. They are proud, very proud, and always want to be handled like princesses. They think they are better than the lesbians, and often despise other genders. That is why, in most cases, they are not always welcomed by other members of the LGBTI community. We always find that challenge. If they find a queue of other patients, for instance patients who may have come in the morning, they always want to bypass and enter the clinical room and tell you “handle me and I go”. When you tell them to wait in the queue they reply; “Musawo (healthcare provider), I have told you I want to go, I have to go and sell sex” so they see the other genders as competitors for sex clients so they always want to be served first”. (Key informant NGO managed healthcare facility).
Stigmatisation by some healthcare providers at key population-friendly healthcare facilities
Some trans-women sex workers were often embarrassed and stigmatised by healthcare providers who saw them as a disgrace and people pretending to be what they are not. Some healthcare providers even went to an extent of telling them to quit “homosexuality”, threatening that they (trans-women) would even miss heaven.
One of us had gone for a check-up at healthcare facility XY (key population healthcare facility) because the client she had had sex with the previous night was not feeling well. When she entered the doctor’s room, the doctor started preaching to her while saying “why don’t you stop practicing homosexuality? You are going to miss heaven.” (FGD).
Breach of confidentiality by some healthcare providers
Trans-women sex workers reported that some healthcare providers in both general and key population-friendly healthcare facilities breached the ethics principle of confidentiality. As a result, some healthcare providers disclosed information about their patients (trans-women sex workers) gender identity to other healthcare providers, and patients. This was seen as a deterrent to seeking healthcare services from these healthcare facilities.
“Ohhh my God, it’s really a challenge (breach of confidentiality). Sometimes, they (healthcare providers) back bite us, they can go and tell other health workers or patients what has happened while in their office. Some healthcare providers are too religious, some are too much into their culture. They think a man is supposed to be a man and a woman is supposed to be a woman, period! That’s what they perceive. So, by the time you get out, all healthcare providers and patients are aware of who you are.” (IDI).
Limited hours of operation in key population-friendly healthcare facilities
Access and utilisation of HIV prevention and care services in key population-friendly healthcare facilities was hindered by the limited hours of operation of key population-friendly healthcare facilities. Majority of these healthcare facilities did not operate 24 hours and were also closed over the weekends. This meant a discontinuity in access to services when needed.
“Facility XXX closes at 4:00 pm, after which you cannot access any service, yet they don’t work over the weekend. So, it’s really a challenge. They also don’t work at night so if you get any problem at night, you will not be worked on. There are times when these healthcare facilities (key population-friendly healthcare facilities) are closed for example over the weekends, which prevents you from getting the treatment on time.” (FGD).
Ignorance of healthcare providers about the transgender identity
It was common in both general and key population-friendly healthcare facilities to find healthcare providers that were ignorant about the transgender. Respondents revealed that some healthcare providers, despite working in key population-friendly healthcare facilities did not understand the transgender identity. In reference to a key population-friendly healthcare facility, one of the trans-women was quoted;
“I am going to talk about XXX, that is where I get my treatment. Before I came to Kampala, I was staying in Mukono. One day, I was arrested and beaten severely while in Mukono. So, my friend took me to that healthcare facility (Key population-friendly healthcare facility) for treatment. I had put on a trouser and a shirt but my hair was woven. When I arrived at the health facility, the health worker asked me; “who are you? What are you? I don’t understand you!” I explained to her that I am a trans-woman. She asked me, “who are the trans-women? I don’t understand the trans-women.” The health worker did not have any idea about the trans-woman. She did not have any information about the trans-women. The health worker came and attended to me but she said; “But I have not understood you.” After three days, I went back but I did not meet the one I had explained myself to that I am a trans-woman. That day I found a different one, and this time it was worse. I was very sick and had to be admitted. When I was on the bed, the health provider asked me, ‘what are you? I don’t understand you. I expected you to have breasts because you have plaited your hair. I don’t understand your things.”
Ignorance of the healthcare providers on the transgender identity was also evident in public and private general healthcare facilities. From the quote below, it was evident that some healthcare providers do not know the difference between the trans-women and the MSMs.
“I will talk about my experience at YYY facility., It is my friend who took me to this healthcare facility. The first time I went to the healthcare facility, healthcare providers asked me a number of questions. They asked me why I behave like a woman and I told them that I am a trans-woman and that is why I behave like a woman. Again, they asked; “What are you? Are you gay?” They had not been taught much about us.”
Discrimination while at healthcare facilities
Besides internalised stigma, discrimination by the communities where they live and members of other key population groups such as female sex workers and men who have sex with men, the trans-women sex workers reported being harshly judged by some healthcare providers in both the general and some key population-friendly healthcare facilities. Trans-women sex workers also felt that they were not satisfactorily recognized under the key population umbrella by other key population groups and healthcare providers, despite being the face of the LGBTIQ community. It was due to this discrimination and lack of recognition that many trans-women sex workers shunned visiting healthcare facilities for SRH services. The forms of discrimination are elaborated in the following subthemes.
Discrimination by some healthcare providers
It was evident that some trans-women sex workers were discriminated by healthcare providers in general and key population-friendly healthcare facilities on the basis of their gender identity. Some respondents pointed out that they were made to wait for longer hours as healthcare providers in both general and some key population-friendly healthcare facilities called upon their colleagues to come and see an ‘abomination’ (a trans-woman) at the healthcare facility. It was also mentioned that some healthcare providers, particularly in general healthcare facilities shunned providing SRH services to some trans-women sex workers, a problem that the respondents attributed to their dress code and physical appearance, which was not considered by some healthcare providers as being normal. In response to the main challenges that trans-women sex workers faced while at general and some key population-friendly healthcare facilities, some respondents were quoted;
“Some healthcare providers make us appear like tourist attractions. When you get to a healthcare facility, she (healthcare provider) first calls her colleagues saying; “you come and see this abomination (while referring to a trans-woman)”. They make you sit and wait for drugs so that her colleagues can come and look at your appearance. Sometimes you feel out of place (embarrassed) and just decide to leave the healthcare facility without getting the SRH service you want”. (FGD).
“Some healthcare providers do not want to treat us because we are trans. I may do my makeup and carry a hand bag as I go to the facility. But once you reach the healthcare facility, you may hear her (healthcare provider) call a colleague; “you come and work on this one, am very busy”. Some of them just don’t want to work on us". (FGD).
Discrimination by straight patients in public and private general healthcare facilities
Trans-women sex workers pointed out that discrimination by straight patients in general healthcare facilities was prevalent, and prevented them from accessing and utilising SRH services. These mentioned that there was a common practice of straight patients back biting them due to their gender identity. As a result, some are forced to leave the healthcare facility even before interacting with the healthcare provider.
“It is worse with fellow patients. Once you meet them, it is like you have met fire. They see you as Satan! They judge us as very evil”. (FGD).
“I was dressed up in my clothes but not sexy. So, when I reached the healthcare facility, other patients started pointing at me while telling their friends, “come and see the homosexuals”, a man who takes himself to be a woman.” (FGD).
“Imagine going to seek health services in the general healthcare facilities and your fellow patients start back biting you. They say; “Look at this one, now what has brought him here.” Then they make fun of you, they laugh at you. So, there is a way even as you are waiting in the general clinic, you are being harassed. So, if you cannot not be patient you may even leave before you see the doctor because of fellow patients.” (IDI).
Stockout of hormones, lubricants, STI drugs and other medical supplies
The utilisation of a wide range of HIV and other STI prevention and care services at key population-friendly healthcare facilities was hindered by stock out of STI drugs, lubricants and hormones (oestrogen-based pills). Availability of lubricants at some key population-friendly healthcare facilities attracts some trans-women to also seek other HIV or STI prevention and care services and vice versa. However, respondents reported that there was inadequate access to hormones required for expression of feminine characteristics. The few who are able to access hormones bought them from private pharmacies with neither prescriptions nor counselling on how to use them from trained personnel. The lack and improper use of hormones dampened the desire of some trans-women sex workers to undergo transitioning. Besides, stockout of STI drugs, lubricants and other medical supplies at key population-friendly healthcare facilities was attributed to the limited supply of such items from the central medical stores. Additionally, some healthcare facilities failed to conduct STI tests due to limited funding of SRH services.
“There are times you go to a healthcare facility and you don’t find medicine, yet, it is the only place you’re comfortable with. There is a healthcare facility where I get my medication, they know me very well. They usually welcome me, hug me and I feel at home while with healthcare providers. However, there are times I go to the healthcare facility and they tell me that the drugs are out of stock, and this can take like three to four months”. (IDI).
“We have challenges of drug stock outs. Healthcare facilities may not be able to offer some of the tests if there are no kits. Right now, healthcare facility XXX does not have enough funding and is not able to do STI tests”. (Key informant).
Managers of healthcare facilities and ministry of health officials re-emphasized that stock out of STI drugs and other medical supplies was a challenge to most of the healthcare facilities in Uganda. On being asked the biggest challenges faced by healthcare facilities in the delivery of HIV and other STI prevention services, one of the healthcare facility managers of an NGO-managed key population clinic responded;
“Drugs! Some trans-women want to transition but we have a challenge of hormones. Many people want to start using hormones but we do not have them. So, if they have money, they will run to Nairobi, Kenya or other private pharmacies” (Key informant).
Healthcare managers acknowledged that drug stockouts compromised the treatment of STIs among the trans-women and the general population at large. Whereas it was revealed that STI testing was done every three months, treatment remained a challenge. However, it was pointed out that strides had been made by some stakeholders to equip key population-friendly healthcare facilities with essential STI drugs.
“STI treatment has been “hmm…” a challenge, but it has been routinely offered whenever HIV testing is being done. We have been able to screen for STIs …as we do HIV tests. Therefore, screening is being done, but the problem is treatment for those who are found with STIs. Most public healthcare facilities do not have enough STI drugs. However, efforts are being made by PEPFAR to stock key population healthcare facilities with STI drugs. Although we still hear that some facilities have stockouts for now, yes.” (Key informant).
Drug stock outs were further validated through a key informant interview with one of the Ministry of Health officials who pointed out that they had obtained similar evidence in a recent validation study for STI and Prevention of Mother to Child Transmission (PMTCT). Furthermore, it was found out that most of the STI drugs in supply were not liked by patients, and that, STIs regimens being supplied by the central medical stores to healthcare facilities were not those recommended by the new STI treatment guidelines. As a result, trans-women sex workers experienced a recurrence of STIs.
“One of the major problems is limited supply of drugs. We recently conducted a validation study for treatment of STI and PMTCT and also discovered that STI drugs are not liked by patients, and are expensive.” (Key informant).
“The National Medical Stores doesn’t supply the drugs that were recommended by the 2010 STI treatment guidelines. Even when you are in meetings with the health workers, they tell you that “you are telling us to treat STIs using drugs that are not being supplied”. And, if you are not supplying them, they resort to treat STIs using drugs recommended in the old treatment guidelines, of which research was done and most of those treatments are not helpful to the patient.” (Key informant).
Inadequate availability of well-equipped treatment centres
Trans-women sex workers faced challenges in accessing STI drugs from general healthcare facilities. This was attributed to the fact that most general healthcare facilities serve heterosexual populations which may not suffer from STI in peculiar parts of the body such as anal region. Such infections require proctoscopy for better diagnosis and management, yet, it is not readily available in the general healthcare facilities.
“There are times you go to a healthcare facility and the equipment are not available. The infections we suffer from are different from those of straight people, especially infections that are sexually transmitted. You cannot go to general healthcare facilities to seek such treatment because they do not have those specific machines. So, you have to go to key population-friendly healthcare facilities like XXX and YYY for such treatment. You cannot just go to other healthcare facilities because even talking to the healthcare provider will be a problem. You cannot easily open up and tell them, I have this infection on the anal area. They will not understand you.” (IDI).
High cost of STI drugs
Respondents pointed out that, besides unavailability, they found it expensive to buy STI drugs from general healthcare facilities. Some argued that they only depended on sex work thus making it difficult for them to save money to drugs.
“The problem we always get is that when you get to the healthcare facility and ask for treatment, they tell you that some of the medicines are not in stock, which means you have to use some of the money the client paid you to go and buy the medicine. In most cases, the medicines are very expensive. So, you end up spending all the money in buying medicine and saving nothing”. (FGD).
“Sometimes our clinics (key population-friendly healthcare facilities) do not have the medicines yet we may be in need of them. You may also find that you do not have money to buy from the pharmacy since these are very expensive. For instance, the cost of treatment for anal warts ranges from UGX 25,000 (equivalent to 7 USD) to UGX 40,000 (equivalent to 11 USD) which I don’t have since I mainly depend on sex work” (IDI).
Coping strategies (Table 2).
Use of substitutes such as lotions, avocado, egg white or yoghurt
Some trans-women sex workers used lotions while others made local lubricants by blending avocado, egg white, margarine, or yoghurt to cope with lack of lubricants. However, the use of lubricants made of yoghurt, margarine and jellies was associated with side effects such as a burning sensation in the anal area, abdominal pain and diarrhoea. When asked how the trans-women sex workers coped with a lack of lubricants, some of the IDI participants said;
“Improvising! It’s actually a funny story. We use eggs! You get an egg; remove the yolk and you remain with albumen. It’s what we use as lubricants. That’s option one. Option two; We use yoghurt; the PH of yoghurt is not really harsh and aggressive to the rectum. If not, yoghurt and avocado, you get the avocado, blend it to get a smooth cream because avocado has an oily part. And the last option would be ‘blue band (brand name for margarine)’ or margarine” (IDI).
“At times we go to meet clients without lubricants due to lack of money to purchase them. Therefore, we decide to use quick items like oils or jelly to lubricate “down” (anal area). These items have chemicals that can even burn the skin. As a result, the anus changes and turns red, and it feels like it is burnt. Some of these oils reach inside the digestive system and changes the internal system, you start feeling stomach ache, and diarrhoea. You may also realize that the behind is full of wounds to the extent that you can’t do anything by yourself.” (IDI).
Psychoactive substances use
Trans-women sex workers resorted to the use of psychoactive substances such as alcohol in order to cope with discrimination, reduce stigma and depression, and to increase their esteem. Some trans-women sex workers mentioned that the use of psychoactive substances would boost their confidence thereby making it easy to approach healthcare providers for SRH services. When asked how they coped with stigma, one of the IDI participants said;
“As transgender persons, we sometimes use drugs to gain confidence, fight off depression or to relieve ourselves of stigma” (FGD).
This was also reaffirmed by one of the healthcare providers who said;
“Drinking alcohol and the use of drugs; anyway, when I ask them why they drink or use drugs, they say the reason is to cope or survive.” (Key informant).
Use of herbs to treat STIs
Some trans-women sex workers resorted to the use of herbal medicines to treat STIs such as syphilis in order to cope with a high cost, limited access and stockout of STI drugs.
“We have these herbalists who claim to cure STIs, and some of us have used these herbal medicines to cure these infections. Therefore, they (herbalists) are alternatives. Some trans-women sex workers go to these “Sengas” (female herbalists) and take natural herbs or botanical plants that have healing properties for STIs like syphilis.” (IDI).
Changing the dress code to hide their preferred gender identity
Trans-women sex workers in this study pointed out that they often dressed in a way that met the societal expectations. The trans-women pointed out that prior to accessing any general or key population-friendly healthcare facility they had to assess the environment and then dress accordingly. The respondents revealed that it was difficult for them to cross-dress, even on their way to a key population-friendly healthcare facility since these had to traverse the community before reaching the healthcare facility. Consequently, these dressed in “men’s trousers” as opposed to their desired feminine attires.
“What really happens when we want to go to any healthcare facility is that we look at our environment. Cross dressing would bring me a lot of problems, and if am to walk or access a healthcare facility, I have to wear like a normal man so that I don’t attract people’s attention.” (IDI).
“If I am to access a facility, I dress like a normal man, without a jegging or even tight pants. I just behave like a normal person. That is the only way you can access a healthcare facility without being discriminated.” (IDI).