Table 1 Narrative quotes of participants’ experiences of conducting HIV research among gender minority populations in Uganda

Positive experiences

Respecting cultural diversity

1

“It was like learning a new language, unfamiliar words, and new expressions that I did not even know existed. Initially, the participants did not correct us, possibly out of fear…. But later, as trust grew, they helped us learn some things, like using correct pronouns.”

“”12

2

“This experience was a revelation for me. It was so refreshing to learn new things in a safe space for us and further research participants. I remember one peer educator called it an exchange of knowledge. She said …teach me about HIV, and I teach you about being transgender. ”

4

Expanding networks

3

“Before beginning this study, I was determined to improve transgender people’s access to HIV services. I knew they existed, but I had no idea where or how to locate them. I will always be grateful to the lady who introduced me to the first transgender-led organisation because that organisation connected me to another organisation. Eventually, I was able to be part of a network.”

8

4

“The participants found participating much easier when we worked with their leaders. I realised there is a whole network and healthcare system that can be used to design HIV interventions for marginalised and ‘hidden’ populations.”

3

Addressing misconceptions

5

“It is sad that we make decisions about people without facts. Working with this population cleared the air on many issues they had, and these were misconceptions that mainly came from misinformation on social media and movies.”

2

6

“because of this, we agreed to write reflective journals daily as a team. This helped us acknowledge our biases and assumptions and bracket them to ensure they did not colour our interpretation of research findings. Some team members did not want to meet the study participants but were comfortable working with the data.”

10

Finding allies

7

“even in hostile environments like ours, you will always find partners and people fighting for human rights and justice and the healthcare of all members of society. This was surprising given the nature of the support we found, including [removed for confidentiality]. This was encouraging to me because it meant we could figure out a way for these populations to get HIV care, which is our goal. As a result, researchers should look in unexpected places to find people who will support them.”

1

Negative experiences

Experiencing stigma and safety implications

8

“This was one of the worst experiences. I was constantly bullied at work, and every time, people were asking me if I was gay. My colleague started calling me the ‘transgender woman’. ”

6

9

“I was surprised because this was coming from fellow HIV health providers who should know better since key populations are crucial in the fight to end the HIV epidemic. To me, this is just a lack of knowledge and understanding. Training can solve this.”

1

10

“I was constantly afraid…. I didn’t tell anyone about it…. I couldn’t discuss it with my family. I was always worried about the threats and the possibility of either having my premises raided or even being jailed for working with a population that was considered illegal.”

9

11

“I think for the safety of the researchers and participants, the concerned government bodies should put some guidelines and protocols that protect us while conducting research. These research findings are not for me; they are meant to improve the healthcare of Ugandans and to help develop policies.”

11

Feeling isolated

12

“I found this work very lonely, and most of the time, I did it alone because I wasn’t sure who would be willing to discuss sexual and gender minorities. This became worse after passing this anti-gay bill; people did not even want to be seen talking to me for fear of being labelled sympathiser or recruiter, which seems to be the greatest crime. I have found a few other people working in the same area, so it’s much better now.”

7

13

“I know we have safe spaces for LGBT communities; this is part of what I learned during this research, but I think it would be nice to have welcoming and inclusive environments where researchers and health workers can come and talk openly about sensitive topics. It’s only in discussing these things openly that we shall overcome this stigma and improve access to healthcare.”

6

Discrimination and fear for the safety of participants and researchers

14

“I don’t know if I was being paranoid, but suddenly, I had to be very careful about what I said and posted on social media……. I just felt watched. I had collected some interesting data but couldn’t even consider publishing it. ”

8

15

“Since the passing of this anti-homosexuality bill, I have changed from working with gender minorities I have changed from working with gender minorities I’m now working with adolescent girls and young women; that is a safe topic……”

Probe: so, what do you think will happen to your unfinished research among trans people?

“maybe some other researchers who are stronger than me can continue that work.”

4

16

“Because of stigma and discrimination, we cannot meet our participants in public places other than hospitals. They must be met in safe areas where neither they nor the researcher is at risk. These venues are usually costly, so we must pay for them.”

1

Lengthy research process and ethical considerations

17

“I applied simultaneously with four other colleagues, and they received ethical approval within a couple of months, but mine took seven months. Some of the meetings I spent answering questions about gender dysphoria, whether being transgender was legal in Uganda, and questions that were in no way related to my methodology or protecting human subjects.”

5

18

“I was very bitter because the funding period was just one year, and by the time I received approval seven months later, I only had five months remaining, and that was not enough time to conduct the study. It felt that some of the reviewers’ requirements were intentionally unrealistic and deterrent.”

5

Unexpected logistical costs and obstacles

19

“in my first year of working with transgender women and gender non-binary people, I had to divert so many budget lines to participant compensation. I had grossly under-budgeted. Eventually, I had a limited budget for other parts of the study and sought additional funding support. Since then, I have worked with members from the trans community during budgeting, which prevents me from having unexpected expenditures during the implementation phase.”

9

(Expectations of money)

20

“People believe that conducting research among these populations is for financial gain. As a result, we receive a barrage of requests for funding assistance, school fees from communities, and money for food to support the communities’ livelihoods.”

7

Criminalization of sexual and gender minorities and implications for researchers

21

“Since it was passed, some participants have not taken my calls, while others have changed numbers. We had recently started recruiting for a clinical trial, but the enrollment numbers have decreased, and the few we recruited did not attend the first follow-up visit. ……Yes, all of them, which was suspicious but understandable.”

10

22

“I am still at war with myself…. As a health researcher, on which side of this anti-homosexuality legislation am I? Does inviting people to the health facility to access HIV services and battle my study amount to recruitment? How can I ensure that my participants continue receiving HIV prevention and HIV treatment? How are my research participants protected? What would my role be if anything happened and they were imprisoned for participating in this study? These are the kinds of tough questions I battle with daily.”

8

Lessons learned

Navigating the ethical approval and study site engagement process (Research regulation)

23

“I learned the value of community. In the next ethical approval application, I spoke to a colleague who had been doing research among men who have sex with men for about 10 years. I found this guidance and support very helpful. I think that by talking to other HIV researchers who work with similar populations and have more experience, people can learn about potential problems and how to deal with them.”

2

(Administrative clearance)

24

“I wish I knew better…… but now I know that before even starting the study, I need to go to the different stakeholders and the people who have power in the areas where I plan to collect this data. This early engagement signifies respect and makes gaining entry, approval, and stakeholder buy-in easier.”

12

Diversity and sensitivity training

25

“Since I had no experience, the Ethics Committee sent me to mandatory training on diversity and sensitivity. It was the best choice, and I recommend that any researcher who wants to study sexual or gender minorities for the first time go to a training like this if one is offered. We had never collaborated with a trans person before, and talking with the peer trainers, hearing their stories, and learning more about transgender healthcare gave me more confidence. The training also gave me the information I would not have had otherwise.

4

Leveraging networks through trust building

26

“I wish I could change things about my first year, but I cannot. I used all my network connections to recruit participants and get more information I could use in other studies. I should have found trans experts and scientists from these communities and collaborated to plan and carry out future studies. After trying this method for about three years, I tried it, and the rest is history. So it’s important to use these networks, but make sure you do it for the right reasons and put the needs of people from gender minority groups first.”

11

Meaningful community engagement and participation

(Design and implementation)

27

“All I can say is that if you want your project to succeed, be effective and be sustainable, just involve members of the population at all stages of HIV research, from the study’s conceptualization to the protocol design to the pursuit of ethical approval, to the implementation of their study……no…no…. don’t just involve them, listen to them, listen to their concerns after all these are their realities, so they’re the experts on what they go through especially for us who are not members of that population”

3

(Dissemination)

28

“I made a joint presentation with one of my partners from a transgender-led organisation I turn HIV conference. ………. people had a chance to interact directly with a community member who faced the challenge and was now reporting about the intervention and how it had changed their life. This approach also helped us to build trust and mutual respect with our participants.”

6

29

“……. involving community members in the dissemination process provides immediate feedback and increases the acceptability of the research findings.”

11

Reflexivity

30

“I tried extremely hard but could not change my attitude towards these populations. I spoke to the PI about it, and he introduced reflexive channels where we had to write how we felt at the end of each day, where we stood in terms of our positionality, and how we thought this was affecting our work. This was very helpful for me because I also learned something about myself and my biases.”

12

31

“yes, I remember the journals…. I know it started out as writing about our biases, but some days were so hard, especially when I saw the stigma and discrimination that transgender people were facing, even from some members of the research team. Writing in this journal became therapeutic as a coping mechanism.”

9

Ensuring safety

(Personal safety)

32

“The discussions around this anti-gay bill were so many and so worrisome. When we received information that one of our participants had been assaulted, we decided to halt the study.”

6

(Participants’ safety)

33

“We revisited our risk management and safety plan because there was now a real danger for our participants. We also sought approval to change the mode of data collection, making it more flexible.”

12

(Data safety)

34

“The data safety plan needed strengthening beyond just identifying participants’ data; we needed to think about storage, particularly electronic data. I would recommend that researchers working with these populations write up a clear and explicit data safety plan. Such a plan should also include measures to ensure that the data is only accessible to authorized personnel and that any breaches are reported immediately to the affected individuals and appropriate authorities.”

7

Equal partnership

35

“The transgender individuals are not your typical research participants; they are interested in participating in the process.”

3

Giving feedback

36

“The participants often complained at the start that we conducted this research, but they did not get feedback that was specific for them. We now organise specific dissemination sessions where we invite the leaders of the gender minority groups and community members and present the findings. It is an open and free session to encourage dialogue.”

7

Knowledge of legal implications

37

“I began my research career with gender minority populations two years ago and sought the legal services of one of the organisations that provide legal aid to LGBT populations. I took it a step further and earned a certificate in gender and human rights, which has come in handy in the current climate. To work with these populations, I recommend being fully informed about the legal status of trans people, prevailing legislation that affects transgender people structurally, and the consequences of breaking the law. I also recommend locating an excellent legal aid clinic or representation knowledgeable in these human rights issues.”

10