Keywords

5.1 Introduction

In recent decades, a range of research methods have evolved that aim to conduct “research with” rather than “research on” individuals and communities (Olshansky et al. 2005; Ganann 2013). From participatory action research (Baum et al. 2006) to patient-centred outcomes research (Garces et al. 2012), co-creation (Greenhalgh et al. 2016), inclusive research (Walmsley et al. 2018) and community-based participatory research (Goodman and Sanders Thompson 2017), all approaches aim to make research more engaged (see Fig. 5.1).

Fig. 5.1
figure 1

Engaged approaches to research

Full size image

Trying to achieve the same goal, some communities now require community approval for research conducted among their members. For instance, the San Code of Research Ethics is the first research ethics code drafted by an Indigenous community in Africa (Callaway 2017). It requires—in alignment with the global research ethics literature (Weijer and Emanuel 2000)—that the community leadership be consulted before research is undertaken on South African San communities. Community advisory boards are similar protection mechanisms developed by communities themselves: researchers seek their advice before enrolling individual research participants in studies (Newman et al. 2011).

One approach to engaged research is to open research teams to community or peer researchers—that is, to “members of the target population [who] are directly involved in the research process” (Guta et al. 2013). This chapter has four aims:

  • to provide an overview of what is meant by “community researchers” and explain why further work in this area is important

  • to describe the benefits and challenges of using community researchers by drawing on the wider literature

  • to introduce a case study involving community researchers from the South African San community in vulnerability discussions

  • to draw out lessons learned from the case study in the context of the wider literature.

As a central tenet of engaged research is to involve communities on their own reasonable terms (Fawcett 2021), we emphasise the importance of flexibility and sensitivity in how any work is undertaken. What we describe here is not offered as a tick list of “how to do it”, but rather as promising possibilities to help build an evidence base for engaged research. This is particularly important for international collaborative research in low- and middle-income countries (LMICs) (Memon et al. 2021).

5.2 Community Researchers

The past few decades have seen the involvement of community researchers proliferate in research in high-income settings, especially in health research (O’Fallon and Dearry 2002; Memon et al. 2021). One of the key reasons for this relates to disappointing results from new, research-based public health interventions and an appreciation of the fact that more valuable findings might have been obtained had the relevant research activities been informed by the target community (Flicker et al. 2017). Participation and collaboration with community members are now key requirements for some funding applications (Wellcome n.d.; Ganann 2013).

Community researchers are members of the target community who are directly and actively involved in the research activities (Ryan et al. 2011; Southby et al. 2022). These researchers work alongside academics and can be involved through all research stages (Ganann 2013). They can help shape the research design, provide support in data collection and data analysis, and contribute to knowledge translation (Kemmis 2006). However, the level of involvement can vary (Hemming et al. 2021).

The engagement of community researchers challenges traditional top-down methods of knowledge creation by academic experts, and values knowledge that is socially co-created with those directly concerned (Ganann 2013). It is underpinned by the work of Paulo Freire, a Brazilian educator and philosopher, who aimed to reduce power imbalances and achieve social change through reciprocity, mutuality and collaboration (Freire 1970).

Various terms are used to describe community members who are part of research teams, including co-researchers/lay researchers, community researchers and peer researchers (Vaughn et al. 2018). These terms also reflect subtle role differences, as outlined in Table 5.1.

Table 5.1 Different terms for involving individuals from communities directly in research
Full size table

The motivations for individuals to undertake this role include:

  • developing transferable skills for employment purposes (Van der Velde et al. 2009)

  • contributing for altruistic reasons, such as strengthening their community, enabling individuals’ voices to be heard and supporting advocacy efforts to shape and develop services, policies and legislation (Van der Velde et al. 2009), for instance the decriminalisation of sex work (Lobo et al. 2021)

  • the remuneration.

Engaged research methods (such as involving community researchers in research) are almost always developed in high-income countries for high-income country settings (Dietrich et al. 2017; Mulvale et al. 2019), for instance as “considered best practice … in research involving indigenous peoples in New Zealand, Australia and Canada” (Goodyear-Smith et al. 2015). However, where knowledge systems differ considerably, it is particularly important to develop and employ co-design or engaged methodologies (Aguirre-Bastos et al. 2019) such as the involvement of community researchers. A potential lack of models for engaged research with marginalised populations in LMICs is therefore a serious concern, with two immediate problems.

First, established models for engaged research, such as community advisory boards, focus mostly on consultation and input on existing protocols to obtain meaningful consent (Strauss et al. 2001; Newman et al. 2011; Manda-Taylor 2013; Ortega et al. 2018; Zhao et al. 2019). Co-design or engaged research methods such as inviting community members into the research team as active co-designers of the research go far beyond consent (Francoli et al. 2015; Aguirre-Bastos et al. 2019; Asari 2019).

Second, current approaches to the meaningful engagement of marginalised populations in LMICs in research are almost exclusively about clinical research (Macklin 2004; Dickson 2006; Hawkins and Emanuel 2008; Ravinetto et al. 2011, 2015; Shivayogi 2013; Tindana et al. 2015, 2019; Weigmann 2015; Joseph et al. 2016). Applying these methods to non-clinical research could reproduce a “medical dominance” scenario (Humphreys et al. 2014)—that is, the adoption in non-clinical settings, without adequate changes, of ethics processes originally developed for clinical research.

The next two sections of this chapter, which discuss the benefits and challenges of involving community researchers in research, therefore need to be read in the knowledge that the wider literature is biased towards knowledge created in high-income countries. That makes our case study from the South African San community particularly useful as a contrast.

5.3 Benefits of Involving Community Researchers in Research

The advantages of involving community researchers in research are important for all parties. Community researchers are “insiders” who can help research teams gain access to study participants, particularly when research is undertaken in sensitive study areas, and when marginalised population groups are targeted (Lobo et al. 2021; Southby et al. 2022). As community researchers are likely to have trusted relationships with community members, this can lead to more meaningful and authentic data being collected (Fleming et al. 2009, 2015). This approach also enables the research to focus on community needs and priorities, for individual, community, and social change.

Thanks to the “insider” characteristic, community researchers are likely to possess valuable local knowledge and relationships that are based on trust and connectedness with other community members (Moore et al. 2011). This means that academics working with them are able to gain access to influential others (Ryan et al. 2011; Lobo et al. 2021) and to engage those who are less represented in research (Southby et al. 2022). It also means that research can be aligned with the values and needs of the community (Lushey and Munro 2015). This is particularly important when marginalised populations report major trust issues about engaging in research due to past experiences of exploitation (Schroeder et al. 2018, 2021).

Community researchers can minimise power imbalances between researchers and participants (Murray 2006; Lushey and Munro 2015). This means that participants may be more likely to disclose issues when community researchers are involved than when dealing with academic researchers alone (Burns and Schubotz 2009; Fleming et al. 2009, 2015). For example, Lundy and McGovern explain how involving community researchers mattered “enormously” (2006: 57) in a Northern Ireland project, in a context of violence, conflict and surveillance. The fact that community researchers can bring a different level of empathy and understanding (Yang and Dibb 2020) may also increase the viability of research in more stigmatising areas such as domestic violence, sex work and addiction (Yang and Dibb 2020).

The data generated by community researchers can help academics and others to broaden their own understanding and create a shared language of cultural identities and health inequalities (Ryan et al. 2011; Lobo et al. 2021). Ultimately this can contribute to redressing power imbalances that have historically allowed decisions about communities to be formulated by an elite group of individuals, usually “outsiders” (researchers, funders, policymakers), rather than to be generated bottom-up by communities (Hemming et al. 2021). Furthermore, if community researchers become the “face of the project” (Creaney et al. 2022), informal feedback can continue to be collected and disseminated, thus enhancing the relevance and credibility of the research findings (Guta et al. 2013; Nöstlinger and Loos 2016), as well as opening up new areas of research (Cashman et al. 2008; Sweeney et al. 2013).

Billions of dollars are lost annually in health research that fails to create meaningful benefits for patients. Engaging in research co-design—the meaningful involvement of end-users in research—may help address this research waste. (Slattery et al. 2020).

From the perspective of a community researcher, being involved in research alongside “experts” can develop self-confidence and provide a sense of accomplishment and pride (Lobo et al. 2021; Southby et al. 2022), promote social inclusion (Lushey and Munro 2015), increase one’s standing within the community (Jamshidi et al. 2014; Nöstlinger and Loos 2016), help one gain new insights into factors that influence the community, and develop skills conducive to employment (Lobo et al. 2021).

Community-based research is also thought to empower communities by encouraging them to identify possible solutions and actions themselves (Lushey and Munro 2015). As this form of research enables cultural and contextually relevant information to be gathered, it can inform relevant interventions with practical implications (Savage et al. 2006; Southby et al. 2022) for social change (Choudhry et al. 2002) that persist beyond the life of any project (Balcazar et al. 2009; Genat 2009). Community research can also develop social capital in local communities by creating vertical and horizontal social networks built on trust and reciprocity (Ryan et al. 2011; Teedon et al. 2015).

Table 5.2, which draws mainly from literature generated in higher-income countries, summarises the benefits of involving community researchers in research.

Table 5.2 Benefits of involving community researchers in research
Full size table

The literature on involving members from communities in research teams also includes some critical voices. The following overview is also based mainly on literature from higher-income settings.

5.4 Challenges of Involving Community Researchers in Research

The challenges of involving community researchers in research can be viewed from two main perspectives: the research perspective and the community researcher perspective. From a research perspective, a key criticism of engaging community researchers is that the research may lack methodological rigour, objectivity and neutrality (Kemmis 2006). This would limit the meaning, credibility and value of the research’s contributions and impacts (Lushey and Munro 2015). Hence, the research might not be as good as it could have been. This seems to contradict the benefits section in this chapter, which refers to the collection of more meaningful and authentic data and the higher trustworthiness of research findings, among other benefits. We will later apply the positive and the critical voices from the literature to our case study and draw some conclusions. The second perspective, that of the community researcher, is not about the value of the research but about the experience of the community researcher, who may feel underprepared, exploited or even retraumatised, as we explain below.

5.4.1 The Researcher Perspective

The involvement of community researchers can present challenges at any stage of the research process. We focus here on recruitment and implementation.

5.4.1.1 Recruitment of Community Researchers

Recruiting academics into research is a well-established exercise combining rules that govern equal opportunities and performance-related appointments. Jobs are often publicly advertised with certain expectations of a candidate, such as a PhD, grant capture and publications. Recruiting community researchers into research is likely to be very different. For instance, where one would be forbidden by law to recruit along ethnic lines, ethnicity may have to be a factor in recruiting community researchers. Rather than meeting a detailed person specification, as required for academic jobs, the main criterion for the recruitment of community researchers is likely to be membership of a defined group. The potential lack of detail underpinning decisions can lead to complications, all of which centre on whether the most suitable members of the community joined the research team. In essence, a key problem in engaging with community researchers concerns who exactly is selected (Chavez 2008).

For instance, the social experiences and/or subjective realities of appointed community researchers may not align with other community members’ perspectives (Kidd and Kral 2005; Guta et al. 2013). In a Canadian study by Greene and others, for example, the peer researchers who were living with HIV/AIDS experienced challenges when their experiences did not correspond with those of other community members (Greene et al. 2009).

While community researchers are generally appointed with the proviso that they will be able to connect with members of their community, in reality this cannot be guaranteed (Edwards and Alexander 2011). And that is not surprising, as “homogenous (local) communities hardly ever exist” (Räsänen et al. 2020). What is more worrying is when individuals are appointed who may be overtly biased or have conflicting agendas. In one study that involved Muslim youth working as community researchers in London, some of the community researchers held strong views about religion, and what they perceived as permissible religious practices, which limited what questions they were prepared to ask and what insights they would explore (Ryan et al. 2011).

Finally, there might be external obstacles to recruiting the most suitable community researchers. Depending on the population being studied, inflexible regulations may prevent certain individuals from being recruited, as in a Belgian study using sub-Saharan African migrants as community researchers (Nöstlinger and Loos 2016).

5.4.1.2 Implementation of Research Involving Community Researchers

While collecting more authentic data is one of the key benefits listed above of involving community researchers in research, criticism has also been raised in this context. Ryan and Golden (2006) argue that data collected by a community researcher who shares certain characteristics with those being researched cannot be presumed to be richer or more in-depth simply because of the assumed commonalities. There are various reasons for this. For instance, community researchers might talk mostly to individuals who are like themselves (e.g. in age or race) or only to those already known to them, or might make assumptions about who is part of their shared community (Kemmis 2006; True et al. 2017). There are also reports of community researchers only collecting superficial data, such as in a UK study working with female peer researchers in Muslim communities (Ryan et al. 2011). This could be due to a lack of confidence or to limitations in the capabilities of community researchers to do this work without formal academic training (Yang and Dibb 2020).

Bogusia Temple and colleagues, reflecting on community engagement work with individuals from different minority ethnic groups in the UK, have noted that community researchers are unlikely to be neutral when transmitting information to the research team (Temple et al. 2002). Community researchers may adapt, “edit” and/or reinterpret the data to prevent the community from being perceived negatively (Temple et al. 2002). This “self-censorship” can then lead to only partial insights being generated. While qualitative researchers generally engage in a lengthy and immersive reflexive process to consider their biases and how they influence the data generated, community researchers are unlikely to do so.

We will revisit these challenges when we compare them with those in our case study of San community researchers involved in our research team. First, we turn to the challenges from the community researcher perspective, as reported in the literature.

5.4.2 The Community Researcher Perspective

In contrast to researchers with PhDs, community researchers have not normally undergone significant training to prepare them for their role. A summary of 18 peer research projects involving residents from 12 disadvantaged communities in the UK reports that some community researchers felt unprepared for the role, attributing this to insufficient time spent on skills development (Southby et al. 2022). One recurrent challenge in training community researchers is literacy levels (Southby et al. 2022; Ganann 2013).

Community researchers may also feel disadvantaged by the way research discussions are organised. For instance, digital poverty can leave them feeling excluded when the research teams discuss important aspects in video calls, as reported in a study undertaken in Australia (Lobo et al. 2021). Or a meaningful level of collaboration with the wider academic team may be undermined when insufficient efforts are made to overcome power differentials and the voices of the community researchers continue to be silenced (Ganann 2013).

Another recurrent question is: which parts of the study should community researchers be engaged in? Involving them only in collecting data, rather than all study activities (design, data collection tools, analysis, etc.) is perceived as “tokenistic” (Jeffreys 2010).

Issues around financial remuneration for community researchers are also discussed in the literature. Good practice stipulates that community members should be paid for their involvement. In reality, however, many organisations have minimal or no funding for the involvement of community researchers (Lau et al. 2020), which can lead to the criticism that the knowledge and expertise of community researchers are being undervalued and insufficiently remunerated (Lau et al. 2020).

Negative perceptions of a project arising from what is being researched and/or reported can also be challenging for community researchers. For example, community researchers working in HIV and addiction research in the USA complained about the overemphasis on, and what they perceived as erroneous assumptions of, risky behaviours being more prevalent in urban and socially deprived communities (True et al. 2017). Peer researchers undertaking research with sex workers in Australia reported challenges when the participants held views about sex work and legislation that were inconsistent with their own (Lobo et al. 2021). Probably the worst possible scenario is that of community researchers who are exposed to information that triggers past traumas in their own lives (Caldwell et al. 2005; Cahill 2007). And finally, as evidenced in a study undertaken in a remote location in Scotland, community researchers can feel abandoned when the project ends (Creaney et al. 2022).

Table 5.3, which draws mainly from literature generated in and focused on higher-income countries, summarises the challenges of involving community researchers in research.

Table 5.3 Challenges of involving community researchers in research
Full size table

5.5 Case Study Involving San Community Researchers

There is a huge gap in the literature on community-based, engaged research approaches in LMICs that go beyond assistance with obtaining informed consent and are not focused on clinical trials (see above). We hope that our work in South Africa contributes to closing this gap by describing the involvement of 12 newly trained community researchers from the South African San community as a case study.

It should be noted that two lead community researchers who represent the San community and are co-authors of this book, Leana Snyders and Collin Louw, have been part of the research throughout all phases. This case study is about the 12 San representatives who were recruited as community researchers for a short community survey.

5.5.1 Overview of Case Study

We start with a photograph (Fig. 5.2). It shows 11 of the 12 community researchers in August 2023, together with Leana Snyders and Collin Louw. The group discussed, among other things, their experience of obtaining information from their communities in a survey.

Fig. 5.2
figure 2

San community researchers

Full size image

Table 5.4 provides an overview of the entire process from the beginning.

Table 5.4 San Community Researcher timeline
Full size table

The discussion that follows is structured around six topics. The first is not often covered in the literature, while the remaining five align approximately with the literature overview presented earlier in this chapter:

  • existing relationships of trust

  • recruitment of community researchers

  • training of community researchers

  • implementation of research

  • benefits and challenges for community researchers

  • benefits and challenges from a research perspective.

5.5.2 Existing Relationships of Trust Built on Fairness, Respect, Care and Honesty

The collaboration from which this book has emerged includes a UK team and two African teams (South Africa for the San and Kenya for the sex workers). The funding is from a UK source, the Wellcome Trust.

At the proposal stage, we used the values of fairness, respect, care and honesty from the San Code of Research Ethics (Chennells and Schroeder 2019) and the TRUST Code (TRUST 2018) to address in advance potential structural inequalities between the partners (Munung et al. 2017; Kok et al. 2017; Cash-Gibson et al. 2018). This was done to avoid any kind of power imbalance favouring the UK partner.

The result is as follows: the leadership team (Joshua Kimani, Roger Chennells, Doris Schroeder, Kate Chatfield) is 50% African and 50% European, 50% male and 50% female. Kenya and South Africa were allotted 55% of staff FTEsFootnote 1 and the high-income setting (UK) 45%. Taking purchasing power parity into account, 62% of the funding was budgeted for Africa and 38% for the UK.

The values of fairness, respect, care and honesty are vital to equitable research partnerships (Schroeder et al. 2019: 14) and they thrive in long-term relationships (Schroeder et al. 2019: 97). On the one hand, the fact that this case study is built on very long-term relationships, as illustrated in Fig. 5.3, is a major benefit. On the other hand, it potentially makes our approach harder to replicate, especially for early-career researchers. However, this is not unusual for engaged research. For instance, summarising participatory action research (PAR), Cornish et al. (2023) note: “A key issue is that PAR researchers do not strive for reproducibility, and many would contest the applicability of this construct.”

Fig. 5.3
figure 3

Long-standing working relationships

Full size image

5.5.3 Recruitment of Community Researchers

As noted in the recruitment section of the literature overview (Sect. 5.4.1.1), there are no established rules for recruiting community researchers as there are for recruiting academics. The most important value for this team was that of fairness, which was used to guide the approach below.

The two lead community researchers, Leana and Collin, visited the three San communities—!Khomani, !Xun and Khwe—in person to share information about the project and to recruit participants for consultative workshops. The further recruitment of community researchers was achieved through getting to know the delegates to the workshops and applying the following criteria: passion, enthusiasm and initiative, previous participation in community activities, ability to influence and communicate with and motivate others, eagerness to participate in the project, and youth, defined as being under 30. As the engagement with the prospective community researchers and the broader San community overlapped, Fig. 5.4 lists the main purposes of the five workshops held.

Fig. 5.4
figure 4

Workshops overview

Full size image

The main purpose of the first two sets of workshops was to uncover what San representatives mean by “vulnerability” and how they want to be protected in research. Individuals were encouraged to talk about what vulnerability meant to them and how vulnerability might be experienced by others.

A secondary aim was to identify four community researchers. This was not done through the traditional application, short-listing and interview method, but instead through a process of engagement, observation and collaboration. This task proved difficult, as a large number of individuals demonstrated excitement about developing skills and confidence in engaging and expressing themselves, as well as a strong interest in the topic of vulnerability. After the first two sets of workshops, 12 young San representatives all seemed equally capable and interested. At the request of the South African team, the PI discussed the matter with the funder, Wellcome Trust, and a change of budget was approved. Instead of four community researchers on long-term contracts, 12 were invited on shorter contracts.

5.5.4 Training of Community Researchers

The initial two sets of workshops held to consult San representatives on their views on vulnerability were designed in such a way that they also contributed to the training of delegates in communication and engagement skills and confidence building. For most of the young San delegates, such participative workshops were a new experience. They were exposed to role play, exchanging stories, hearing new ideas, presenting their own thoughts and ideas to a group, and eliciting information from others. The workshops were designed to be fun and to build trust among participants, as well as between them and the workshop facilitators, Leana, Collin and Roger.

In all five workshops, the delegates also met the PI, Doris Schroeder, in a Zoom meeting. On each occasion, she summarised the progress of the project so far and gave short updates on what was happening in Nairobi. In the fifth and last workshop of the research cycle, she was joined by UK colleague Hazel Partington, who had analysed the survey data and presented her analysis to the community researchers.

From Workshop 3 onwards, the main purpose of the workshops was to train those who had outshone the others in energy and enthusiasm, and in their ability to engage and connect with others. Some of the 12 individuals had never been employed before, and local leaders welcomed their selection because it would offer new development opportunities. All 12 were delighted and readily agreed to continue working on the project. After their selection, they proudly dubbed themselves “The Chosen Ones”, which contributed to good team building.

The main training focus in Workshop 3 was threefold:

  • Bias: As part of improving their understanding of the process of obtaining information from others, the 12 learned how to avoid bias. They understood that they would have the power to influence answers, but should avoid doing so.

  • Socratic dialogue: The 12 performed exercises that enhanced their grasp of Socratic methods, emphasising the importance of being humble in attitude, building trust, seeking information in a spirit of curiosity and collaboration, and challenging assumptions in a diplomatic manner.

  • Ethical Conduct: The importance of not collecting personal data was emphasised, as was the fact that those they spoke to in the community would need to understand what the project was about and that taking part in the survey was voluntary.

5.5.5 Implementation

In Workshop 3, all 12 community researchers were involved in designing the questions for the community survey on vulnerability. A draft questionnaire was first used in an exercise, with the group divided into researchers and interviewees. This was followed by an evaluation session to discuss which questions had worked well and which were problematic. Following feedback, some of the questions were framed more simply, and the number of questions was reduced. Through this exercise the community researchers became co-authors of the questionnaire they were to use when collecting data in their communities.

On completion of the training workshop, each community researcher was commissioned to collect information from ten people per month for two successive months. A key condition was that they not consult only with people already known to them, such as family members, but extend their engagement to the wider community. They were reminded to go about collecting the information humbly, in a spirit of curiosity and without promoting their own views. They were encouraged to seek short answers, to be copied verbatim onto the questionnaire form, and reminded not to collect personal data. All 12 accepted this assignment.

Of the 240 surveys planned for, 239 were returned and translated into English. The PI and the translator, Roger, looked at all the answers and listed those that needed clarification. These clarifications were sought during Workshop 4 from 11 of the community researchers. (The 12th was unavailable.) Thus clarified, the 239 surveys were analysed by Hazel from the UK team.

What did the community researchers make of the process? The next section sets their experiences against the benefits and challenges identified in the literature and detailed earlier in this chapter in Tables 5.2 and 5.3.

5.5.6 Benefits and Challenges for Community Researchers

For the reader’s convenience, the benefits and challenges for community researchers as set out in Tables 5.2 and 5.3 are summarised here in a single table, Table 5.5.

Table 5.5 Benefits and challenges for community researchers
Full size table

It seemed inappropriate to run a traditional evaluation on young San who had given the project time and energy and whose remuneration was not considerable (given that the number of community researchers was tripled from 4 to 12 within the original budget). Hence, we are going to present two types of feedback. The first set was obtained verbally from 12 community researchers at the end of the third workshop and covered feedback on the workshops, including the training opportunities. The second set was obtained verbally from the 11 community researchers present at the fifth workshop. (The community researcher unavailable for the fifth workshop was not the same as the one who missed the fourth workshop.) Both sets of feedback were recorded in the form of notes by the facilitators.

5.5.6.1 Feedback: Workshops

At the end of Workshop 3, feedback was obtained from the group on what had worked and what had not worked in eliciting trust and ensuring a safe discussion space to enable effective participation by workshop participants. Feedback from the community researchers was recorded as follows.

I felt very easy from the beginning with Roger, Leana and Collin. I felt that they will not judge me. Introductions were very clear and friendly. Language was made to be easy. There were many jokes, we felt safe with them.

We were all strangers at first. Leana told us her story of how she found her confidence, which was inspiring. We were made to interact a lot, which gets us to know each other far better. The only negative I have is we need more exercises.

I was so shy I was too scared to even speak. As we went on, I felt better and better. The trainers were friendly, encouraged us to speak up, and made us not hide behind the confident ones for them to speak.

I was so very shy. More than others. The friendly manner of the trainers helped me slowly feel safer and to trust that I can relax here.

We were made to be safe. Role plays helped us to mix with the others we did not know, in an easy way. We were encouraged to practise speaking more and more. I am now less shy.

I was very scared at first. I felt brave to even come. This group was quickly made to feel like my community. Like a family even. We felt love while we learned. We were never made to feel unsafe. The trainers handled us with a friendly way.

Trainers had smiles, were always very friendly. Topics were interesting. And vulnerability is a great topic for us to talk about our lives and to get to know each other. Talking about our vulnerability here helped us to feel more comfortable with each other.

At our first meeting, I was so scared. But the workshop was friendly, and there was love and respect from trainers. I did not feel judged. We were cared for so well. We got to like all the others on the workshop. Together we all learned a lot.

I first met Leana and Collin. They were friendly. Then I met Roger. There was always lots of laughter in the workshop. First, I was scared to meet the Kalahari San, as our (Khwe) Afrikaans is weak. The trainers helped us to meet each other in an easy way. Just like parents.

The trainers were like kind teachers. They helped me to communicate, to trust myself that I can speak to people.

I was so scared. The leadership was good. I was so vulnerable, but the trainers showed us respect, patience, friendship, acceptance. You made us feel safe.

5.5.6.2 Feedback: Survey Experience

I was very nervous at first, but it got better. I am not used to asking other people about their problems. I have heard and learned a lot doing this work and feel that I have become a better person.

It was so hard at the start. After some interactions I became less anxious, and learned how to listen to different perspectives, then to respond differently. I was deeply touched by people’s stories, and I feel the process has changed my life in many ways. I feel I got to know new things about my community.

Was very nervous at first. Some were very suspicious. Some made it clear that they wanted money and wanted me to help with their problems. I wanted to help but could not. It was emotionally difficult to see what my people are going through.

I was very anxious at first. I did not give up despite some early disappointments. Some did not understand at first, but when they did, they enjoyed going through the questions.

Some people just sent me away. I started getting better at approaching them to get the right result, and then I was invited in more and more. I felt I got better with time and enjoyed the work.

Day one was hard. People see you with paper. They think you are going to promise something. I tried to explain we are not empty promises. We are doing research. Some were suspicious. You are taking information from us. Day two I got better at explaining the story, and from then on I started to enjoy doing the questionnaires.

It was hard at first getting people to agree to do the questionnaire. They were full of complaints. Some sent me away and refused to answer my questions. Others at first thought I am selling something or benefiting. Some were very firm and challenging. However, I really enjoyed the process. I am keen to get better.

The work was hard for me at first. People think a person visiting door to door with documents must be politics. I learned how to explain why our research is different. Some people enjoyed the discussion and thanked me when I left.

It was not difficult for me. I like people. However, some people were challenging. One very difficult person I explained carefully. Translating from Khwe was not easy. Some of the answers were painful and stayed with me.

The project has been so educational. People are far from me, I had logistics problems. Some were not keen to participate. I went to people I did not know too well. After hearing their stories, I learned so much, again, about the community and its problems. I had the feeling that we should be more fearless. Getting deeper information about the people was so interesting and gave me new insights.

It was difficult. Some needed a lot of explanation. I learned a lot in the conversations. The second ten questionnaires were much easier. There were many surprises, and sad stories.

Three main messages come through from these sets of feedback: early struggles, swift improvement and a good learning experience in a safe space.

First, almost without exception, all community researchers found the workshops and the survey work difficult at the beginning. They felt shy during the workshops and nervous to approach community members with their survey questions. However, none of the difficulties can be related to the literature outlined earlier in the chapter: deficiencies of training were not mentioned; digital poverty was not relevant, as the research was recorded on paper and contact with the South African team was in person; power differentials were not experienced negatively, the facilitators even likened to parents by one community researcher; the community researchers saw the survey as a chance, rather than as exploitation by them as data collectors; many reported that the sad stories they heard in the community stayed with them, but that is different from retriggered trauma; and finally, because the project is continuing, we do not know yet whether they will feel abandoned when it ends, but we hope to find funding for a future collaboration.

Second, all community researchers declared that they improved with time. In the workshops, this happened very quickly, as the workshop facilitators made them feel safe, not judged, and even inspired as they experienced lots of laughter and, on occasion, feelings of love. In the process, they gained self-confidence and a sense of accomplishment and pride, and extended their social relationships and networks, as well as gaining new skills, exactly as the literature predicted (see benefits in Table 5.5). With one exception, they all had a difficult start to their survey work, yet they overcame these difficulties and became better with time, as they began to enjoy the experience. The fact that 239 out of 240 surveys were returned on time is an excellent indicator that the initial nervousness and struggles had been successfully overcome.

Third, the community researchers felt safe with the workshop facilitators, which freed them to use the opportunity to learn. Their feedback indicates that they gained in confidence and that several learned more about their communities and community problems. Again, this is as predicted in the literature, which assumes that community researchers can gain new understandings of factors influencing the community.

There are only two of the benefits to community researchers suggested by the literature that we cannot comment on based on the feedback recorded above, namely standing within the community and better employment prospects. However, the South African team and local leaders noted that the 12 who were selected all gained confidence, as well as skills and capabilities. This might also be evident from the fact that “The Chosen Ones” felt able to advise Nairobi community researcher Joyce Adhiambo, whose interaction with her community was slightly later than the San’s with their community. The advice was:

  • Be vigilant.

  • Build trust.

  • Respect the knowledge of your source.

  • Protect the privacy of your source.

  • Be very patient with your explanation of the questionnaire and process.

  • Be passionate about/during the interview. If you are bored, so will they be.

  • Be friendly and open.

  • Don’t be too hurried.

  • Be well prepared on the topic, to cope with any responses.

  • Be considerate, your source is giving his/her precious time.

  • Expect the unexpected (dogs, outbursts).

Overall, it seems that the 12 San community researchers managed to obtain almost all the benefits predicted in the literature overview without being held back by any of the challenges.

5.5.7 Benefits and Challenges from a Research Perspective

For ease of reading, the benefits and challenges from a research perspective set out in Tables 5.2 and 5.3 are summarised here in a single table, Table 5.6.

Table 5.6 Benefits and challenges from a research perspective
Full size table

Our experience did not reflect the challenges noted in the wider literature. The involvement of 12 San community researchers to find out how the San view “vulnerability” was highly effective, in our view, and can be verified by our findings presented in Chap. 3. Of the 239 surveys which came back, five were suspiciously similar. It is possible that the person who obtained the answers injected his or her own bias or that he or she talked only to family members, but this would have been an exception. One could say that getting very short answers to five simply phrased questions might count as collecting only superficial data. But as can be seen in Chap. 3, the data was rich and highly diverse and led to conclusions that the South African team and the 12 community researchers recognised as highly poignant. There was no detectable adaptation of the data to make the community look better, given, for instance, that drug and alcohol abuse with the attendant social problems came through clearly as a subtheme.

In contrast to the challenges, the benefits of involving community researchers in research were mirrored in what the literature section of this chapter had anticipated. Information was obtained from San who only speak languages that are on the decline and which none of the authors of this book speak. Hence, access to a difficult-to-reach group was only possible through the community researchers. As many noted in their feedback, the stories they heard were very sad—which comes through clearly in Chap. 3—and the answers were authentic and trustworthy. The extent of the poverty-related problems the San face and their exclusion from broader society are devastating. These insights call urgently for new research agendas and priorities to ensure that the San are not left behind—not in research and not in life.

5.6 Conclusion

Engaged research, which strengthens research teams through community researchers, provides many opportunities and challenges. From better access to community members who are hard to reach, to the collection of more meaningful and authentic data, and to greater trustworthiness of research findings, the benefits for research are manifold. Community researchers themselves can benefit from new skills, increased self-confidence and a sense of accomplishment and pride, to name just some advantages. At the same time, community researchers might be overtly biased, only collect superficial data or lack the confidence to probe deeply enough, to name just some of the challenges.

The literature on community researchers is heavily biased towards high-income countries, and very little can be found on experiences from low- and middle-income countries that go beyond assistance in obtaining informed consent. This chapter has begun to close that gap by setting out a case study of involving 12 community researchers from the South African San community. The study has produced an astonishing result: almost all of the advantages identified in the literature could be identified in the San case study, while almost none of the disadvantages were present.

A community that still suffers from intergenerational trauma caused by genocide, and has been exploited by researchers and others for many decades (see Chaps. 3 and 1), needs the right type of research done in the right way to address its vulnerabilities. Exclusion from research to accommodate multiple vulnerabilities is not the answer, but research that is led by vulnerable groups for vulnerable groups is possible, as the case study in this chapter has shown. Collecting no personal data and obtaining all research input through community researchers is one way of ensuring that the San, and research communities more widely, have access to research they can trust.