Table 2 Illustrative quotes for the themes related to community engagement practices or expectations before, during and after a study/trial

Refining the study’s focus and plan

Q1 “Planning and hotspot analysis and in which area it [data collection] will happen, there should be a discussion on this [with communities]”. (FG11, Community Advocates)

Q2 “Whenever we design any kind of a study, we should definitely consider what community we are targeting and what is our focus area, whom we are going to be speaking to and their flexibility, their availability, their settings where they are comfortable to talk to us or speak or maybe their timings, so these should be considered whenever we design the study”. (FG12, Researchers)

Q3 “I think [about] flexibility component [in research design]. That is why I always insist on participatory approaches. We should also be able to get their views on how to design—because that [engagement] will solve almost half of the problems.” (FG6, Researchers)

Q4 “Before doing research, among the communities where we will conduct our research, there will be other stakeholders—other civilised people, teachers. So, it is very important to have meetings with them.” (FG10, Adult Women)

Formalising connections with community agencies

Q5 “No one can directly come and work with them without an NGO or support [from community members]. Earlier we needed a platform to get associated, like now it is an organisation [a community-based collective of FSWs].” (FG5, FSWs)

Q6 “That [Directly reaching key populations] won't be possible now. You have to go through an NGO—only then you can do research”. (FG11, Community Advocates)

Q7 “I think this partnership with CBOs is very key because in longitudinal research we are mainly looking for people who would sustain in the research or participate in the research for a long time. So, we see that most of these key populations are also very much connected with the CBOs because they have drop-in-centres—so we could consider conducting our research study within the CBO premises as well.” (FG12, Researchers)

Train community representatives for better CE

Q8 “So how should we [community representatives] be and how can we explain the needs of the hijra culture [to researchers] and how should the responses from research institutions be conveyed to hijra people—all of this should be taught to CAB members and they should be given training. They should also be taught as to how they can remain selfless.” (FG2, TGW)

Q9 “Not much attention is paid to communities’ capacity building, leadership quality—especially for women”. (FG4, PWID—Women)

Q10 “When we talk about CAB, we also need to talk about capacity building of these teams, strengthening them, providing adequate support so that they can make meaningful and community-friendly decisions for their study.” (FG12, Researchers)

Getting inputs on informed consent forms

Q11 “Before doing the research, some people will keep 3–4 sessions just to talk to you, just a hangout with [research team]. If they do like that then you get familiar and you feel that you know this person to some extent so the consent that I give [is based on trust].” (FG1, MSM)

Q12 “So, usually, we do have an informed consent form on which we take signatures—but they cannot read it. So, we always have to verbally explain the thing. Whatever is there in the consent form, that is in technical language but when we explain it to them, we do it for at the level for lay people.” (FG3, PWID—Men)

Q13 “So, you have to keep many things in mind like language—you cannot speak in Hindi over there, you need to take care of Nagpuri or some regional language. When people come, the biggest mistake they make is, they start speaking in English. There are many from rural areas. But in tribal states, you have to take care of language as it’s very important if you want to connect with the youth.” (FG8, ABYM)

Q14 “I am talking about verbal communication, direct one-on-one conversation. If there is a community leader who wants to pass on a message to the community, then the community leader should be equipped to communicate with them and explain these scientific terms in simple language.” (FG1, MSM)

Getting inputs on study tools

Q15 “I think when we are developing questionnaires, the communities also need to be consulted with, what type of questions will you be including in this research, how do we approach [ask the questions] because there are certain things which we cannot directly approach [ask] the community.” (FG11, Community Advocates)

Q16 “A lot of things that we have learnt, we have learnt it from the people—our participants and our community-based investigators. Especially when we were trying to conduct qualitative research—how to ask a question, what language to use, what are the key words, what is the language which is offensive—all of those things we have learnt from our community members.” (FG6, Researchers)

Q17 “If you give money [compensation] then it is like [we are] getting respect. I feel that I have done something good and in acknowledgement I have received cash or in kind”. (FG 4, PWID—Women)

Establishing and engaging the Community Advisory Board (CAB)

Q18 “What you shared [about CAB] just now, this can happen, if we want that the work is result based. If such a thing is happening in other countries and they are getting good results, then this should be there in India. We should definitely do this and see what difference it will make. We will get to know only after doing it.” (FG9, Adult men)

Q19 “If you want to make a committee, then, like you said, we can keep 6, 7 people, if we are doing it in a ward, then we can take that ward’s member, who represents people and another, we can include people from the Anganwadi…Anganwadi sister and we should include an ASHA worker and like, if there is a BDO [Block Development Officer] there, if it is of a block.” (FG10, Adult Women)

Q20 “If in research, we want to make any additions or omissions, then we hold a meeting with the entire team representatives or with stakeholders in which we discuss going forward—how we can change our rules or strategy. In CAB meetings, there is a lot of involvement of the community, which is very useful to develop our strategy.” (FG1, MSM)

Q21 “So, I was just thinking that if somebody who is a lay person and who knows only Hindi or the regional language then how can they have access to these boards. If you are trying to make it more inclusive then how can we provide them training in regional languages…how can we make them part of the board.” (FG12, Researchers)

Q22 “But CAB can handle community dynamics, that is good and that is why they get appointed or they become part of the process. But can they handle the issues of ethics in research correctly?” (FG12, Researchers)

Q23 “They (CAB) should answer to each and every question because there are so many questions in our [potential participants] mind about the situation that we are dealing with now, so they should have perfect answers for everything.” (FG13, PWNM)

Engaging gatekeepers and community influencers

Q24 “It is important to ask [hijra] Guru [clan leader]. We have been working for so many years in [city] and have our freedom …you have to take the permission of the Guru.” (FG11, Community Advocates)

Q25 “So, even if we try to discuss HIV or AIDS, people don’t wish to talk about it due to the shame and stigma associated with it. We faced a lot of problems. We could not collect any data. We went repeatedly and came back empty-handed. After that, we arranged a meeting with a few members. We connected with well-known educated people and consulted a doctor. Through them, we tried to tell people, how important it is to know about AIDS.” (FG7, AGYW)

Q26 “We need to meet the members from the community who they listen to. If we directly go to them, they won't listen. If we can make their president [ward member] understand then they will listen since the president will be educated.” (FG7, AGYW)

Q27 “They [researchers/counsellors] can…[meet] the sarpanch, the main leader of the village. So, first, we will take their [sarpanch’s] help so that they can create awareness as we won't directly force anyone to get HIV test done.” (FG10, Adult Women)

Q28 “There is a brothel and if we go for conducting research over there…If we [community leaders] or the other leaders are there only then they give us entry and they [community leaders] explain everything with facts and very nicely, you can participate in a group or even individually. If anybody from outside comes to do research [without involving community leaders] then they will not even gain entry.” (FG11, Community Advocates)

CE during the study implementation

Capacity building for communities on research basics

Q29 “Of course, they [research agency] did have an orientation of sorts, like orientation of what this research is about, how you go into the field and how to get the answer, how do you direct the communities and all, that brief kind of orientation was, but not in-depth ones, like the actual process of research.” (FG11, Community Advocates)

Insights from communities on building researchers’ capacity

Q30 Sensitization training is important and all people who work in this area [should] know the basics…And along with the participation from the community to understand what kind of language they use, how to talk to them, so all that should also be included in the training. (FG3, PWID—Men)

Insights from communities on building communities’ capacity

Q31 “You can even train our community to do research. It’ll be a quality work when we do it. We [as study participants] will not hesitate to reveal any details. So, involve the key population members themselves in data collection.” (FG5, FSW)

Q32 “Yes, but it [training] wasn’t such a very conventional type of training. It [training] was done through prolonged discussion and sharing of our experiences in the field of drugs in HIV and how we are going to conduct it. So, after following a digest from the main study implementer, I got involved in doing all these things [conducting interviews and focus groups].” (FG3, PWID—Men)

Involving peers in recruitment and retention

Q33 “They [women drug users] are very-very scared whether it will be confidential. So, to get [even] a handful of…women drug users, it is usually better…to go through the TI [targeted HIV intervention projects].” (FG11, Community Advocates)

Q34 “We make simpler narratives which can be easily communicated to the communities…peer recruiters, on behalf of the research team, would reach to the community in their preferred languages and communicate the research objectives, the eligibility criteria and the procedures and so on.” (FG12, Researchers)

CE after the study completion

Sharing interim findings to get feedback

Q35 “Feedback is important…if any shortcomings were there [in the study], then try and make it up in the future.” (FG11, Community Advocates)

Q36 “Community can also give feedback on how we can benefit the community by this data, so there could be a discussion on that.” (FG3, PWID—Men)

Q37 “We conducted a social-economic study of transgender women, so we shared the instruments and methodology with them. After the research, I had a conference hall full of 150 transgender women in front of whom I presented the data and some of them gave me good recommendations that we incorporated [in the final report].” (FG6, Researchers)

Sharing study findings and outcomes with the study populations

Q38 “There is research going on in the community and it is completed. I think it should come back to the community—what is the result of the research, what were the findings. Many times, what I see is, people come and go…they do research, they have respondents, they have questions, they have meetings and everything but we never get to see the result.” (FG11, Community Advocates)

Q39 “We share the results by calling for a meeting. It is best for them [communities] to know what the outcome of the research is. We make it in a written format and give it to the household. We tell them that this is the result of conducting the research in the community.” (FG7, AGYW)

Q40 “Yes, it will be good if sharing it is good. You will win their trust that what happened with me, they worked for one year, two years, then what was the result of that. Many people work and then leave. Their work is done. The persons that they worked with—they [communities] should know what good has happened from the two-year study.” (FG9, Adult men)

Q41 “I am an injecting drug user and have been living with HIV for several years now, I have participated in a couple of studies in the past, and articles have been published in [a reputed international journal].” (FG3, PWID—Men)

Planning for next steps and sustainability

Q42 “The findings from the research should be able to guide us for the next steps, what we have not achieved. What were the gaps that were there that were not particularly addressed in this implementation—thus, the research document becomes very helpful. Because research comes with evidence and it’s very important for us, for the community to advocate with evidence, with important stakeholders.” (FG11, Community Advocates)

Q43 “Participants are expecting that after the completion of research what we are going to do. This is also important, what I realise, in the field.” (FG6, Researchers)

Q44 “If there has been a new research study and there is a new medicine and its results are good in other cities then we should be informed of it and vice versa if the results are good in our city then it should be made known to all cities and everywhere so people know that if a particular medicine is not helping them or not curing then it can happen with this other medicine so they can try the new one.” (FG4, PWID—Women)

Q45 “In HIV prevention project…these findings will inform our future studies. So, for sustaining this kind of research studies, I feel that the contributions of community members and CBOs are very important. So, I think we should give equal importance to CBOs and community members in HIV prevention research.” (FG12, Researchers)