Refugee-Inspired Ethical Guidelines from Kakuma: Moving Toward Decolonising Research Practice

Abstract

Scholarship addressing research ethics with forcibly displaced communities has gained heightened attention in the recent past. While critical, this scholarship has remained largely theoretical and has not included the voices of those who face forced displacement. This manuscript contributes to a more comprehensive discussion on ethical research with refugees and forcibly displaced populations by providing recommendations from refugees in the Kakuma Refugee Camp in Kenya. Based on focus group discussions in the Kakuma Refugee Camp, this article offers practical refugee-inspired research recommendations when working in the contexts of forced displacement. The paper categorizes these recommendations into three categories: (a) pre-research, (b) data-collection, and (c) post-research. By framing the analysis in and advocating for a decolonising research ethics prism, we illustrate the broad implications for maintaining the holistic well-being of research participants in forcibly displaced contexts.

1. Introduction

Academic research with refugee communities has taken place over several decades in various global contexts. More recently, critical scholarship highlighting the significance of conducting ethically appropriate research with forcibly displaced communities has received heightened attention. This work prioritizes the importance of redressing procedural ethics (informed consent, research ethics boards) and relational ethics (respect, reciprocity) (Clark-Kazak 2021), balancing academic rigor with relevance to the research community (Block et al. 2013), and attempts to avoid unintended exploitation due to power hierarchies (Deps et al. 2022; Krause 2021) between researchers and participants. Additionally, a growing number of scholars are specifically exploring the colonial implications of research with refugees and those who face forced displacement. Included in this work are approaches to and considerations for decolonising (Ghorashi 2024; Kia-Keating and Juang 2022) and indigenizing forced migration studies (Canefe 2024). Generally, decolonising research suggests resistance to Eurocentric methods while prioritizing the worldviews and ideologies of formerly colonised individuals and communities (Chilisa 2020). Indigenizing research refers to the process through which traditional, Indigenous, and local problem-solving approaches are integrated into the mainstream, Eurocentric methods and approaches (Twikirize et al. 2023).

Despite its significance in the field of research ethics with forcibly displaced communities, decolonial scholarship has remained largely theoretical and generally excludes the voices of those who face forced displacement. In other words, much of the work examining the significance of decolonial and culturally sensitive ethical practices with refugees is drafted by those without lived experiences of forced migration. While empirical research including the voices of displaced persons does exist (see Block et al. 2013), this paper focuses specifically on research ethics principles recommended by refugee participants in the Kakuma Refugee Camp in Kenya. Furthermore, by rooting the analysis in a decolonial ethics paradigm, this manuscript categorizes specific participant-inspired recommendations for future researchers in Kakuma. These include recommendations in three phases: (1) before the research, (2) during data collection, and (3) in the post-data-collection phase. Although this project is specific to the Kakuma refugee camp, the results may be useful for research with various forcibly displaced communities due to the heightened awareness researchers need to engage in more culturally sensitive ethical research with such communities (Clark-Kazak 2021; Krawczyk and Dieudonné 2023; Müller-Funk 2021).

This paper focuses on research ethics, emphasising its significant contribution to the special issue on “Health and Forced Migration.” We firmly believe that unethical research can cause harm to forced migrants. Such harm consists of broken trust, re-traumatisation, and feelings of betrayal, which could impact the mental and spiritual well-being of participants. Research exists on the impact of misinformation from those who hold the power over refugees to create knowledge (Azzam et al. 2006). This scholarship indicates that a lack of adequate, thorough, and helpful information to refugees from those who wield power causes confusion, anxiety, and sometimes death (Azzam et al. 2006). Azzam et al. (2006) recommend that all information provided to refugees must not only be accurate and helpful but also clarify its purpose. For instance, instead of simply informing refugees about the work, researchers must clarify why their consent is important, its boundaries, and how to make use of it. This relates to the communication strategies used by all researchers working with refugees and their relationship-building skills. Evidence also indicates that unfulfilled research promises relating to the hope of a better life can cause anticipation, unmet expectations, and depressive symptoms among forcefully displaced populations (Xi and Hwang 2011). Xi and Hwang (2011) indicate that when individuals expect desirable things to which they believe they are entitled and their expectations are not met, they feel deprived and suffer mental distress (Xi and Hwang 2011). To mitigate the negative effects of unmet expectations, researchers should maintain realistic expectations and avoid making excessive promises that they are unable to fulfil (Horst 2011; Horst and Grabska 2015).

Indeed, it has been noted that ethical relationships between researchers and participants are tantamount to a patient–physician relationship, considering medical personnel and researchers share the foundational concepts of trust, do no harm, confidentiality, and safety (Deps and Charlier 2020). As such, the findings in this paper may generate useful insight for all researchers interested in detailing the experiences of communities faced with forced migration, particularly those focused on the holistic well-being of refugees and forced migrants. We adopt the United Nations (1951) Geneva Convention’s definition of refugees as people who, owing to a well-founded fear of being persecuted for reasons of race, religion, nationality, membership of a particular social group, or political opinion, are outside of their country of nationality/former habitual residence and are unable to avail themselves of the protection of those countries or unwilling to return to home (UN General Assembly 1951). We use the concepts of refugees and forced migrants interchangeably to depict people who are forcibly displaced outside their countries and crossed international borders.

This paper examines the concept of decolonising research ethics and provides a contextual understanding of the Kakuma refugee camp. It then describes the methods applied in Kakuma, followed by refugee-inspired research recommendations. Finally, we provide a critical discussion on the significance of applying a decolonial and collaborative approach to research with refugees in the Kakuma refugee camp. However, we first feel it is obligatory to position ourselves within the broader project.

1.1. Researchers’ Identity & Positionality

The first author is a white male academic from the United States, who studied in both the US and Canada. He is currently an Assistant Professor of Social Work at a College in the US. He does not have lived experiences of forced migration, but instead has been socialized in a world of Eurocentrism, colonialism, and whiteness. As such, he was overtly aware of how his intersecting identities impacted the entirety of this project, from conceptualization to dissemination. The second author is a female Ugandan academic who completed her undergraduate degree in East Africa and her postgraduate degrees in Europe. Currently, she is a Lecturer of Social Work at a European University. These aspects of her identity influence her approach to research design and analysis. She is aware of her privileges, particularly her access to higher education and academic employment, which enable her to conduct research within institutional settings that may distance her from the communities she studies. Yet, as an East African woman, she has experienced different levels of trust and expectations than the first author in her work in refugee settings.

Our intersecting identities undoubtedly impacted every phase of the project. This included participants’ expectations of us, levels of trust, and commitment to the project. Due to the confines of the manuscript, we are unable to provide an in-depth analysis of how our intersecting identities impacted the entirety of this project. For a detailed account of that, please see the following: (Bilotta 2023). It is important to note that Author One conducted the project in the Kakuma refugee camp and Author Two analysed the data and provided consultation to the first author.

1.2. Decolonisation

Research can be perceived as an exploitative activity towards vulnerable populations, as it can reinforce oppressive systems and inequalities either directly or indirectly. Ali (2024) states that research agendas and the theories that emerge from the west are embedded in a world of deep inequalities—and, in this case, direct violence and the exploitation of participants. While concerns about power, privilege, and positionality are foundational to various critical theories and methodologies, including feminism, queer theory, and participatory action approaches, decolonial scholarship is distinguished for its focus on the continuity of structural and colonial epistemologies that remain in contemporary forms of knowledge production (Go 2017; Mignolo 2018). As such, social sciences and humanities scholarship highlights a push towards a “decolonial turn” or an attempt to shift away from merely critiquing Eurocentrism to actively seeking to divorce from western epistemic frameworks by prioritizing knowledge production from those marginalized by colonialism. In other words, the decolonial turn considers the ongoing coloniality of power and the need to question the western-centric construction of research epistemologies and methodologies (Go 2017; Quijano 2007).

Seppälä et al. (2021) describe decolonising as a process or practice that actively seeks to transform colonial and Eurocentric research practices based on hegemonic western epistemologies by repositioning the participants at the centre of the process and developing alternative forms of engagement to support their perspectives and interests. According to Ali (2024), decolonisation demands that “we question and challenge the world as we know it and we work to dismantle the structural and systemic conditions of research on underprivileged research participants” (p. 421). The process requires self-reflection and unlearning the traditional ways of doing research. Decolonisation, thus, does not start with the ’other’, but rather trying to decolonise oneself and transform one’s practices of working (Motta 2016 cited in Seppälä et al. 2021). This indicates that all aspects of coloniality, which involve hierarchical power relations in today’s social order, must be challenged and replaced across all areas of contemporary life, including science and academic knowledge.

Decolonising research is a process that requires an inclusive determination of learning, unlearning, and relearning (Datta 2017 cited in Held 2020). Researchers can then challenge the colonial practices and processes of both the past and the present and seek to create a new social order that intrinsically demands the collaboration of the coloniser and the colonised (Held 2020). Issues of power, privilege, and positionality are critical in decolonial ideology. Those undertaking decolonial research must design their projects in ways that question the dominant narratives and relationships of power that perpetuate delocalised and disembodied the perspectives of the global minority world, and eliminate other ways of knowing (Seppälä et al. 2021). This can also occur indirectly when researchers adopt concepts, terminologies, or methods that reinforce colonial attitudes. Seppälä et al. (2021) state that colonial power relations and Eurocentric forms of knowledge are reproduced in western epistemologies, and their claims to objective and value-free science must be challenged. Additionally, alternative theories, methodologies and epistemological inquiries must be proposed to open new approaches which are less Eurocentric and support the perspectives of the colonised.

Decolonising research is a complex and non-structured undertaking. A decolonised approach must dismantle western scientific research procedures that have historically oppressed non-western knowledge systems (Held 2020). Decolonised ethical practices must comprehensively address the possible risks of vulnerable groups participating in the research. We chose to analyse these data through Held’s (2020) suggested five Rs of decolonised research approaches, including respect (for participants for who they are), relevance (engaging in research that is relevant to the participants’ perspectives and experiences), reciprocity (giving back), responsibility (fostering trust-based relationships and empowering the researched to participate on their terms and relationality). In other words, the application of the five Rs was not considered until we analysed the data and, therefore, did not shape our research questions from the start. Furthermore, research strategies must begin with ethical questions about the structural and systemic inequalities between those who are privileged and underprivileged populations (Ali 2024). This is significant with refugee communities that face constant systemic injustices, as is the case in the Kakuma refugee camp.

1.3. Kakuma Refugee Camp

The Kakuma refugee camp sits in a semi-arid desert in a remote section of northwest Kenya, in Turkana County. Established in 1992, the camp lies approximately 100 km south of the South Sudan border and 1000 km northwest of Nairobi. The protracted refugee camp encompasses four zones (Kakuma I–IV) and has grown substantially over the past three decades to become one of the world’s largest (Oka 2014). In 2015, the UNHCRs and the Kenyan government established the Kalobeyei Integrated Settlement as the population expanded. However, our project took place exclusively in the Kakuma refugee camp. The residents of Kakuma are mainly from South Sudan, Somalia, and the Democratic Republic of the Congo, though significant communities from Sudan, Ethiopia, Eritrea, Uganda, and Rwanda reside within (Bilotta 2021). Like many refugee camps, Kakuma is host to a myriad of non-governmental organizations (NGOs) and community-based organizations (CBOs) that provide a gamut of services, including food, healthcare, and education. Although visitor accessibility to the camp is processed and permitted via the Kenyan government’s Department of Refugee Services (DRSs), the United Nations High Commissioner for Refugees (UNHCRs) works in collaboration with the DRSs to provide protection services, assistance, and support to refugees by providing food rations, shelter, and cash-based assistance (Ogutu 2024). The camp itself includes the features of a large town with roads, markets, schools, hospitals, and restaurants (Ohata 2005). As of January 2025, Kakuma was host to 299,884 refugees (UNHCR 2025), making it more populated than the host community in Turkana West Sub-County (Ogutu 2024).

The Kakuma refugee camp lies about 1 km from Kakuma town, and both the camp and Turkana West Sub-County face abject poverty (Ogutu 2024). Ogutu (2024) details how sustained colonial practices of oppression, restrictions of movement and work, and marginalization continue to impact the refugees in Kakuma today. Due to colonial underpinnings, donor fatigue, and emerging worldwide crises, global funding for protracted situations has significantly reduced (Ogutu 2024; Zarocostas 2024). Taken together, there has been a continuous push for refugees in protracted contexts, including Kakuma, to move towards a neoliberal self-reliance entrepreneurship trajectory (Ogutu 2024). Finally, the Kakuma refugee camp was selected as the project’s site due to the continuous influx of academic researchers traveling from western-based institutions (Bilotta 2021). Indeed, Kakuma has been labelled as “over-researched”, where a sentiment of research-fatigue has been noted(Omata 2019). As such, we felt prioritizing the voices and perspectives of those who have been involved in continuous projects was critical.

2. Methods

This paper draws on the analysis of the second phase of a multiple-phased research project. The larger research includes 31 qualitative interviews, and three focus group discussions (FGDs) conducted in the Kakuma refugee camp in 2017 and 2019.

2.1. Phase I—Qualitative Interviews

The data presented in this manuscript are derived from the second phase of the project, which includes refugee-inspired research recommendations from participants in the Kakuma refugee camp. Phase I explored the experiences and impacts of previous research studies with refugee participants in the Kakuma refugee camp (Bilotta 2023). In Phase I, we facilitated 31 semi-structured interviews with refugee young people (18–30 years old) who had previously engaged in qualitative research projects with academic, non-refugee academics (Bilotta 2019, 2023). The research participants were from Sudan, South Sudan, Somalia, the Democratic Republic of the Congo (DRC), Burundi, Eritrea, and Rwanda. Of the 31 participants, 18 were male-identifying and 13 female-identifying. The inclusion criteria also included having previously engaged in qualitative research studies in Kakuma within the past two years of the first interview. Participants were drawn into the project through posted advertisements throughout the camp, conversations with NGO staff members, community health centres, restaurants and shops, and word of mouth. Of the 31 interviews, 29 were conducted in English, and two participants requested a translator. Each participant received a USD 3 participation incentive.

The research question and sub-questions consisted of the following: How do refugees in the Kakuma refugee camp negotiate and make sense of engaging in research? Why do refugees participate in research? What is respect in research? In what ways has participating in research met or not met participants’ expectations? The results from the first phase of the project indicated that participants’ experiences consisted of (a) unmet expectations following data collection and (b) claims that researchers instilled false promises to participants (Bilotta 2023). Furthermore, participants claimed that based on these two factors, they did not feel respected by researchers in the Kakuma refugee camp. For a detailed methodology of Phase I of the project, see Bilotta (2019).

2.2. Phase II—Focus Group Discussions

Phase II of this project was in response to the Phase I results (e.g., participants feeling that their expectations went unmet and that researchers instilled false promises). As such, in Phase II, we facilitated three focus group discussions (FGDs) in the Kakuma refugee camp with the participants from Phase I. The FGDs intended to provide a platform for participants to share their advice or recommendations on ethical practices for future researchers in the Kakuma refugee camp. To qualify for Phase II, all FGD members needed to have participated in Phase I. After the completion of Phase I, we communicated with all participants to inquire about their interest in participating in Phase II. Out of the 31 participants, 21 expressed interest in Phase II.

Based on guidance from four local block leaders (refugee community leaders who oversee and represent a certain geographical area of the camp) in the camp, the FGDs were intentionally created as follows: (a) FGD 1 included eight men, (b) FGD 2 included seven women, and (c) FGD 3 included three men and three women. All participants self-identified their gender. Designing FGDs based on gender was not only advised by camp block leaders, but both anecdotal evidence in the camp and academic scholarship insisting that gendered power imbalances in many sub-Saharan African contexts are evident (Medie 2022). Thus, providing spaces where gender power inequities could be minimized seemed important. The third focus group consisted of mixed genders because those six participants specifically asked to be in a mixed perspectives group, unlike the other 15 participants in FGD 1 and FGD 2. Each FGD lasted anywhere from 71 min to 117 min, and they were facilitated in a classroom at a school in the camp. We recorded all FGDs using a digital voice recorder and transcribed them verbatim.

Phase II questions consisted of the following: If you could create your own rules for researchers and research participants, what would they look like? What do you want researchers to know about conducting research in Kakuma? What questions do you have for researchers? Is there anything else you feel is important to share about research ethics in Kakuma?

Institutional ethics approval was received from McGill University’s Research Ethics Board (REB), the Kenyan Government’s National Commission for Science Technology and Innovation (NACOSTI), the Refugee Affairs Secretariat (now the Department of Refugee Services), and local commissions within Kakuma town and camp. All names in this manuscript are pseudonyms.

2.3. Data Analysis

We read and reread each FGD transcript several times and applied an inductive thematic analysis to the FGDs. Inductive thematic analysis has been labelled a “bottom-up” (Frith and Gleeson 2004) approach where a project commences with a research question, and the collection and analysis of empirical data are used to engender a hypothesis or theory (Nowell et al. 2017). Furthermore, open and axial coding were used to generate themes (Braun and Clarke 2006) across the three FGDs. The three themes included participant-inspired ethical recommendations for future researchers in the Kakuma refugee camp prior to, during, and post-data collection. The participants of all three FGDs had the option to participate in their preferred language, but all chose English.

3. Results

3.1. General Feelings on Research Participation

The majority of research participants in Phase II felt that research in Kakuma is crucial and valuable for several reasons. These include improvements to education, health infrastructure, food rations, and sanitation throughout the camp. Phrases describing participant views on research included, “It is very important to share our hardships in the camp”, the “results of the research can help improve our lives”, and “it allows us [refugees] to advocate for our problems”. This was also expressed by one of the participants.

Research is very good because it … helps other people to realize a problem or challenge because research is about trying to investigate a certain scenario or challenge, and from that … we may be able to find the remedy or the solution to that challenge. It helps you gain more knowledge.

(Jean)

While this remains promising for researchers in contexts of forced migration, FGD participants recognized that researchers often did not follow up on the challenges they discovered as they “investigated a certain scenario”. This lack of follow up became the impetus for their recommendations during pre-data collection, data collection, and post-data collection. Without following the refugee-led recommendations, FGD participants remained unsure about participating in future work, as acknowledged in this statement.

I don’t think I’ll want to do or participate in another research. What was the whole point of doing the research if nothing is to be done about the problem?

(Rousa)

The participants of the FGDs proposed several recommendations for researchers to consider before, during, and after data collection. Including them all would far exceed the boundaries of this manuscript. Instead, we provide the two most commonly cited recommendations for each phase of data collection.

3.2. Pre-Data Collection Recommendations

The FGD participants emphasised the need for researchers to prepare before arriving in Kakuma. Such preparation extends beyond what is perceived by experienced researchers and reproduced through completing the standard procedural requirements of conducting research in Kakuma, such as Institutional Review Board (IRB) approval. This section details FGD members’ needs for researchers to (a) familiarize themselves with the cultures of camp residents and (b) engage in a critical self-inquiry related to their work before arriving in Kakuma.

First, FGD participants requested that researchers familiarize themselves with the cultures of camp residents before arriving in Kakuma. Common among FGD responses was that researchers must understand that there are not only several nationalities within the camp, but also that tensions and ideological differences exist within peoples of the same nationality. Therefore, they must avoid general assumptions about Africans or all members of one nationality. One participant likened it to a “background check” while suggesting that

You cannot expect everybody to be the same just because they live in Kakuma.

(Prince)

Similarly, Sayyid, indicated that

…you cannot think that Ugandans and Somalis are the same and have the same body language and attitudes about researchers. You can also not think that all South Sudanese are the same because they are also different.

In addition to understanding the culture of camp residents, researchers must engage in a critical self-reflexive process on why they are embarking on projects in Kakuma. Critical reflexivity refers to processes of examining the assumptions, values, biases, social systems, and structures that influence professional practice (Setchell and Dalziel 2019), in this case, research. More specifically, FGD participants thought it necessary for researchers to consider their motivations for conducting their work in Kakuma before embarking on such an endeavour. In other words, what motivates researchers to facilitate research in Kakuma? Are researchers interested in initiating change or more concerned with their own agenda and career trajectory? To this, Marisa stated the following:

The first thing researchers must know is that they are coming into a poverty-prone zone where many people are suffering badly… and refugees, let me tell you, the refugees, it is like, we are considered like not important people sometimes… you have to know the setup of the camp…I have seen some researchers come in their car and stop you as you’re moving along the side of the road. They ask you if you can be in their interview. They don’t even tell you many things about them. When they are finished, they go with the car.

During the FGDs, the word “empathy” surfaced several times. For instance, Glorie stated:

Why are researchers coming if they don’t do anything about the research problems, they ask us about? They don’t follow up with us after they finish. Maybe some of them don’t have empathy. Can they find more empathy?

When discussing empathy, Joseph asserted:

So, at the back of their [researchers’] minds, they know they could have an impact on people. I’ve had plenty of researchers, and I don’t remember their faces. Why? Because they did not have an impact on me. At the back of their mind, they should not just do it for their own good but should have empathy for the people they are finding this research on. It should be like 50-50, and not 90-10. The 10 is for me to talk, and that’s it. The 90 goes to the researcher, taking all the information and getting all the credit on the other side. So many times, people read the research and say, “Oh, that’s what happens? Oh, that is sad.” And that is it; there is never anything done about it. Maybe in 100, you find only five researchers who want to make a change. It’s a personal thing for researchers.

This statement suggests that researchers reflect on how their work will shift their participants’ experiences. It involves a greater amount of self-reflection and familiarity with the research context than simply identifying the project’s aims or objectives.

Finally, another participant claimed that researchers must be motivated to create change in the camp and not conduct research simply for the sake of conducting research.

Before they [researchers] come here, they should have the right motive. Don’t get excited about whatever you’re going to benefit. But get excited about whatever you’re going to deliver because that’s the most important part. Because if you’re concerned about whatever you’re going to deliver, then you will be doing the right thing.

(Camilla)

The next section offers participants’ suggestions for researchers during the data collection phase.

3.3. Data Collection Recommendations

The participants of the FGDs proposed several recommendations for researchers to consider while in the data collection phase. These include liaising with local block leaders in the camp, partnering with community-based organizations (CBOs) instead of only connecting with international NGOs such as the UNHCRs, and getting to know the people they will interview before asking challenging personal questions. This section will focus on two recommendations: (a) not making false promises to participants and (b) the need to restructure informed consent documents.

In all FGDs, a resurfacing theme was that researchers must not “promise” anything to participants as a way to convince them to participate in their project. Upon further inquiry, nearly all participants in the FGDs claimed that researchers had made false promises to participants. Astur claimed,

Whatever they [researchers] promise us, as in they promise us to make change, they promise us feedback [from the research], but they never, they never do anything about it.

We probed the participants of the FGDs on this notion of “promise” because promising participants’ particular outcomes seemed to violate procedural ethics principles. However, the FGD participants affirmed that researchers made promises. When asked what was promised to participants, responses ranged from returning research results after data collection, providing money for food, and saying goodbye to participants before the researchers left Kakuma to instilling changes in relation to whatever they had come to research.

The problem … the bad thing is to promise someone something, and you do not achieve that goal that you said to the person. If someone promises me, I will tell my real story because I trust that person…I am giving them my heart. But, he [researcher] did not do anything that he promised me. He promised me lots of things, but nothing was done.

(Malik)

To some participants, the notion of a “false promise” felt like the researchers did not respect participants. Sunday stated,

Those researchers did not respect us in Kakuma. They even neglected us by giving false promises.

Based on the claims of false promises, another commonly cited recommendation was for researchers to restructure and amend informed consent documents. Overall, participants felt that communication between researchers and participants needs to be improved, as indicated in this statement.

There is something that has to be done with researchers. They have to do some kind of improvement on how they conduct themselves, mostly communicate better…that is very important.

(Olivier)

For instance, participants expected that researchers would return to Kakuma and share results after they were analysed. If the researchers were unable to return to Kakuma, the participants believe that researchers could communicate results via email, phone, or some other way, as suggested by David.

I need to see feedback so that I know that I have not wasted my time or the time of my people … research is about sharing between both sides. I answered those questions with you … we collaborated.

Furthermore, participants claimed that informed consent documents need to include information that spells this out more clearly.

The informed consent document is like a contract. It should include a place where the researcher will say if they will come back or try to provide us with the results. They need to make that clear. That will make it easier for us participants to know what to expect.

(Victoria)

One focus group participant discussed how the detailed informed consent document could engender a discussion, including a deeper appreciation and authentication of the research relationship.

If the researcher tells us exactly what the research is about, I can make a better decision. Like, if the research is only here to write a thesis or a book and not bring about change to my situation, I want them to be honest and tell me that. Then, I can decide if I want to help them with their book or not. But, I will no longer be expecting change from them. But, if these researchers come only to write a book about us, we should be receiving a copy of the book. Why are we not seeing the book if it is about us?

(Frederick)

Taken together, the FGD participants believed that a more detailed informed consent document specific to what the researcher will or will not do after leaving Kakuma was important, which led to the recommendations for the post-data collection phase.

3.4. Post-Data Collection Recommendations

The FGD participants had several recommendations for researchers in the post-data collection phase. These include “not selling” participants’ stories to make a profit and avoiding “twisting” participants’ words to make their work seem different or better than what was shared. However, the two most common recommendations in this phase include (a) do not “disappear” and (b) follow up with research recommendations. The phrase “disappearing researcher” was mentioned several times in all FGDs, as indicated in the following account:

People come and do research, and they just disappear. They just disappear that way without even telling you what are the findings and what was the recommendation based on the analysis of the information that they collected from different people. That is bad.

(Evette)

Participants explained that the primary reason the “disappearing researcher” was “disappointing” was that most participants expected researchers would (a) communicate results to participants and (b) attempt to bring about change to the situation, as posited by Abebe.

So, researchers come and go. Like most of them tell you, ‘Oh okay, we will look into your situation and see how we can help you.’ But then, they just disappear… without communication.

Due to the disappearing researcher sentiment, participants felt strongly that researchers should make more of an effort to follow up with their data analysis. It was noted that the researchers should first “take action themselves”, and if they are unable to initiate change with their data analysis and recommendations individually, they should look to highlight our issues and share them with NGOs in the camp … research is not about you [researchers] keeping the information and not sharing it (Christopher). This was also reiterated by Karla.

If a researcher is asking you about your problems you are facing, you feel they will make a change. Maybe you feel that they will report it to the in charge of the organization. For example, if you are coming here to do research on medical issues in Kakuma, can you be sure that the report will go to IRC [International Rescue Committee] or UNHCR or the donors funding the health situation in Kakuma refugee camp? So, whenever I see a researcher, I feel that the purpose is just going to improve the services of refugees.

Some FGD participants linked sharing project results to their African culture.

In Africa, we share together. Once there is something, we must share. Those who went to do research or to know what’s going on, they have to come back and explain to us, tell us—they have to be open to us to give us the full information with what they got as the result from their research. That’s our African behaviours, beliefs, yeah.

(Amon)

Another participant claimed that by participating in the project, they are part it, and sharing the results is essential.

I want to see the research result because I did the research together with you. If you don’t come back, then it’s not part of sharing. Because you need to be able to share the feedback. When you’re sharing the information of the field you come back, give us the feedback so that we can feel like the information was really useful.

(Beverly)

The participants recommend that researchers share results with organizations in positions to support them in terms of refugees’ fundamental human rights, such as education, food, shelter, and medicine. Secondarily, two of the three FGDs recommended that researchers share their findings and results with other researchers. The reason was two-fold. First, the participants felt that researchers could “hand off” their recommendations to other researchers who would pick up where the first researcher left off. Secondly, the participants wanted researchers to share their concerns with scholars in the global minority. The purpose was to inform those European and American researchers that people in Kakuma have special requests for researchers (Mary) about future work in Kakuma or other contexts where forced displacement occurs. Finally, Joseph stated that it was important for future researchers not to make other refugees feel disappointed upon completing their research.

4. Discussion

The findings of this project contribute to a broader and more comprehensive discussion on research ethics with refugees and forcibly displaced populations (Clark-Kazak 2021; Krause 2021). Some of this scholarship recommends including decolonising research approaches (Canefe 2024; Bilotta 2021). Yet, there is a paucity of empirical work specifically examining decolonising refugee research through the perspectives of refugee research participants. The results presented in this paper address this gap and offer a deeper analysis of how researchers can practically engage in decolonial ethics that align with the worldviews and ideologies of refugee participants. In this section, we summarise and interpret our findings by connecting them to refugee research ethics and decolonising research scholarship. We argue that the FGD participants in the Kakuma refugee camp indirectly advocated for researchers to include decolonising approaches in future projects in Kakuma. Finally, we discuss the implications of the project, acknowledge its limitations, and share pathways forward that align with decolonial research ethics practices with refugees and other forcibly displaced communities.

It is important to acknowledge the connection between our findings and decolonising research ethics with First Nation communities, particularly in Canada. Indeed, Held’s five Rs are drawn from the work of Restoule (2008, 2017), and several First Nation thinkers (see: Kovach 2021; Smith 1999, amongst others). We firmly believe that future research should explore the similarities and differences between the research experiences of communities that face subjugation based on different intersecting identities. (e.g., refugees and First Nation communities). Doing so here would extend beyond the limits of this manuscript. However, it would be unjust for us not to note that our analysis of the refugee participants’ recommendations is drawn from the insight of a myriad of thinkers from the global majority who have experienced significant inequities in research.

4.1. Decolonising Refugee Research

The findings acknowledge that participants in the Kakuma refugee camp think about ethical approaches to research within their community. Overall, the participants expressed that research is critical for the future prosperity of the camp. However, many participants claimed that research approaches need to be redressed to benefit participants in addition to “only benefitting researchers”. As such, the participants from the three FGDs provided recommendations for future researchers in Kakuma during three phases of a project: pre-data collection, data collection, and post-data collection. In this section, we examine how the FGD recommendations at all three phases align with Held’s (2020) five key principles to decolonial research practices: (a) respect, (b) relevance, (c) reciprocity, (d) responsibility, and (e) relationality. Our analysis applies these decolonial principles to the entire project (pre-data collection, data collection, and post-data collection) as they traverse each phase. For this project, it was difficult to disentangle the tenets suggested by Held (2020); instead, our data emphasise their interconnectivity. In the following section, we break them down individually and in pairs to provide specific insight into each of the five principles.

Respect. The notion of respect has been addressed in refugee research ethics scholarship (Lawrence et al. 2015; Krause 2021; Bilotta 2023). In their work with refugees, Bilotta (2023) found that diverse worldviews, values, and cultures often contribute to varied definitions of respect between researchers and refugee participants. More specifically, researchers tended to consider “respect” in research based on procedural ethics, including maintaining fidelity to the informed consent document. In this project, it appears that refugees considered respect as an umbrella term for the remaining four Rs, as proposed by Held (2020). For instance, refugees claimed that respectful research includes acknowledging the importance of communicative and honest researcher and participant relationships, including reciprocity in these relationships, the relevance of research outcomes, and that researchers should be responsible for engaging in self-reflexive processes. As such, without acknowledging the four remaining Rs in connection to respect, it would be difficult to engage in decolonising research, as indicated by Held (2020). Millum and Bromwich (2020) expand the notion of respect for persons in the context of research ethics, asserting that this must address the conditions for valid consent, including competence, disclosure, understanding, and voluntariness. This means that for consent to be valid, those who provide it must have enough information about the overall research agenda, including how results and findings will be disseminated. However, in many refugee settings, this might be curtailed by contextual factors that affect decision-making abilities, such as poverty and an unrealistic sense of expectations (Deps and Charlier 2020). In other words, based on their circumstances, refugee participants may feel that researchers will be able to directly impact their lives and participating will lead to opportunities, including employment and resettlement in third countries (Bilotta 2019). Therefore, researchers must provide valid consent by confirming that participants understand that they are permitting researchers to proceed and not be coerced into research while being overtly aware of the “benefits” or lack thereof of; otherwise, the risk of exploitative research becomes elevated (Millum and Bromwich 2020). Based on the results of this project, the participants did not always feel that they understood what they were consenting to. This was most cited by participants when claiming that researchers could have been more transparent about post-research dissemination. Millum and Bromwich (2020) emphasise that while consent forms are important tools for demonstrating whether consent was given, placing too much emphasis on these forms can detract from the essential person-to-person interactions. These interactions are crucial for enhancing the understanding of the project, which can lead to respectful research relationships.

Relevance & Responsibility. When acknowledging relevance and responsibility, the FGD participants connected these two decolonial tenets. For instance, it was implied that if researchers engaged in responsible practices, the research would be relevant to participants. The first pre-data collection recommendation included the need for researchers to engage in an ongoing critical self-reflexive process. Such a process includes researchers’ responsibility to unpack how their colonial histories (those from the global minority world) and intersecting identities may inform their relationship to the Kakuma refugee camp and their intended work.

The responsibility of researchers to engage in a self-reflexive process in colonial settings has been acknowledged in the literature. Carlson (2017) states that anti-colonial practices include researchers engaging in critical self-reflexive processes to examine how their social location impacts the entirety of research in order not to reproduce colonial practices. Such an approach is pertinent as it may prepare researchers to consider their intersecting identities and social location, which will impact how they are perceived by participants. This process may include a researcher exploring what it means for them as a non-refugee to enter a refugee context by asking questions such as, what are the expectations of my researcher? What does my presence in the camp, as a non-refugee, signify to residents? By responsibly engaging in a self-reflexive process, researchers can also determine if their work is relevant to the participants in Kakuma, in addition to benefiting only the researcher.

In addition to providing researchers insight into their social location and identity, the self-reflexive process can support researchers in determining how to make their work relevant and meaningful to participants in Kakuma. Furthermore, researchers participating in daily practices addressing their social location combined with unpacking colonial structures will provide a pathway to critique and envision alternative decolonial research practices, as researchers need to support the perspectives, needs, and interests of the participants in their local and cultural contexts (Carlson 2017; Seppälä et al. 2021). Finally, researchers responsibly exploring the relevance of research may minimise the distorting, overlooking, exaggerating, and drawing of conclusions based not on factual data but on assumptions hidden in value judgments or a misunderstanding of their participants and contexts (Seppälä et al. 2021).

Reciprocity and Relationality. Similar to relevance and responsibility, the overlap between reciprocity and relationality is quite difficult to untangle. For instance, FGD participant feedback implied that strong relationships would lead to reciprocity in research. According to Held (2020), the cornerstone of decolonisation is reflected in mutual benefits and learning ensuing from the reciprocity of a research relationship between the researcher and the participants. One way reciprocity can be attained is through honest and transparent communication. Millum and Bromwich (2020) claim that reciprocity is achieved when participants are told about the research and are encouraged to ask questions about it. Weak relationships between the FGD participants and researchers appear to have led participants to feel that the researchers had made false promises. Indeed, the participants were expecting researchers to provide research results. Had there been further discussion between the researchers and participants, specifically about the process of the project beyond data collection, perhaps the notion of false promises might not have surfaced. Maintaining ongoing relationships with participants is a sign of mutual respect and credible research (Held 2020). These ongoing relationships can also prevent what Millum and Bromwich (2020) refer to as therapeutic misconceptions in research practices. Therapeutic misconceptions refer to inaccurate beliefs that participants may have about the studies they join. These misconceptions are often heightened or developed based on how information about the studies is presented. For example, participants may mistakenly believe that the procedures of the research are conducted primarily, or even exclusively, for their benefit, particularly (a) if the relationship between the researcher and participant is not strong and (b) in the contexts of forced migration where life is generally precarious (Akesson et al. 2018; Millum and Bromwich 2020).

Without strong research relationships, the majority of the FGD participants in Kakuma did not consider their previous research experiences to be reciprocal due to the lack of researchers following up after data collection. Furthermore, many participants did not equate a monetary token of appreciation from the researcher with reciprocity in research. While participants appreciated the money/material for participating, they considered reciprocity to be more relational instead of transactional through the material/money. Indeed, the participants expected that simply because they participated in a project, there would be an exchange of information in addition to a material exchange. Some connected this to their African culture. Furthermore, the notion of reciprocity for the FGD participants in Kakuma was also connected to the feeling that relationships between researchers and participants are of equal value when generating knowledge. Without reciprocity in the relationship, participants felt “disappointed”, “unhappy”, “used”, and “bad”. In fact, one participant likened it to a “parasitic relationship”.

The significance of relationships and reciprocity in decolonised research cannot be overstated. Building sustainable relationships involves great commitment and continuous engagement between the researchers and the participants (Chilisa 2020). As the researcher–participant relationships develop and change, there is room for adjustments and improvements. For instance, Held (2020) suggests that when researchers return to the community after analysing their findings, it permits them to review these findings and enables all those involved to build lasting and trustful relationships. This relates to nearly all the FGD participants desiring and expecting researchers to provide results upon the completion of data analysis. Currently, IRB-mandated procedures do not account for ongoing relational experiences or reciprocity between researchers and participants. Indeed, western-based institutional ethics structures do not require researchers to engage in ongoing relationships or to provide results to participants. It is, therefore, difficult to divorce the extractive nature and colonial reproductions of research from common institutionalized informed consent documents, where reciprocity and relationship building are not prioritized. Although previous scholarship has explored the effectiveness of informed consent documents in refugee research (Clark-Kazak 2021), further attention should be paid to how these institutionalized ethical procedures serve to protect the researcher from the global minority instead of the relational integrity of those engaged in the work.

Another way to build stronger and more sustainable participant and researcher relationships is through collaborative and/or participatory approaches (Driver and Higgins 2014). Seppälä et al. (2021) define participatory research as work performed in close interaction with people, groups, and communities with the potential to transform them. Research that is disconnected from its context enforces an agenda that benefits the interests and profits of dominant groups, thereby perpetuating a system of inequalities and violence (Ali 2024). Researchers can facilitate participatory/collaborative research with participants through various procedures. First, participants should take ownership of their research agenda, ensuring that they have the material, social, and political conditions necessary to determine which questions are important and which are not (Ali 2024). For example, well-resourced researchers can provide direct benefits or reasonable incentives such as skills training to reduce inequality and exploitation. In addition to securing research approval from western institutional review boards, researchers must access ethical approval from the institutions where the refugees are settled. This not only ensures acceptability and a co-produced research agenda but also ensures that the project does not harm the participants.

Another important procedure for developing stronger research relationships with respect is to include community consultations at all stages of the process (Held 2020). This specifically relates to FGD participants’ recommendation that researchers first connect with local block leaders in the camp. It is essential to recognize refugees as experts in their own experiences. This approach ensures that research is re-examined and reframed to prioritize the concerns, perspectives, and knowledge systems of the participants. By doing so, refugees can own and control the research, which aligns with principles of liberation, empowerment, and the enjoyment of their rights (Held 2020). Analysing our findings via Held’s (2020) five Rs illustrates the need for researchers to engage in decolonial practices in the Kakuma refugee camp.

4.2. Research Limitations

There are limitations to this project, which include (a) a failure to interview the researchers who conduct research in refugee camps or similar contexts and (b) analysing our findings through one decolonising research approach. By not acknowledging the voices of the researchers who conduct their work in refugee camps, this project excludes the nuances of their research or the challenges those researchers may face in facilitating research in forced migration settings. Indeed, gaining the perspectives of researchers may provide deeper insight into the FGD claims of researchers creating “false promises”. Additionally, this research did not account for the countless reasons why returning research results to participants in refugee camps may pose financial and logistical challenges for researchers. Finally, a myriad of decolonising research definitions and approaches exist, and although they share many of the same tenets, they are not identical.

5. Conclusions

This article contributes to the field of research ethics concerning refugees and forcibly displaced populations. As the findings have indicated, conducting research within refugee communities is important for information sharing, advocacy for improved services, and activism for the general transformation of communities. However, to realise these benefits in refugee situations, it is essential that research is conducted ethically and from a decolonial perspective. This perspective highlights genuine methods that may alleviate uncertainty and emotional distress for participants who could already be traumatized by violence, war, and human rights violations.

The findings highlight the significance of relationships in ethical decolonial research, emphasising how power, privilege, and positionality play a crucial role in the process. We suggest that decolonial research must be designed in ways that question the dominant narratives and relationships of power that perpetuate inequality and exploitation. Ethical decolonised research must thoroughly address the potential risks associated with vulnerable groups participating in the project and ensure a positive experience for all participants.

Researchers must critically examine their power and positionality, using their privilege not only to address any risks that participants may face but also to ensure that participants benefit from the research conducted with them.

Critical self-reflexivity and honesty are important attributes for researchers looking to decolonise their research designs and approaches. This is important to avoid making generalist assumptions before, during, and after the work. Research projects involving forced migrants should be approached as a sensitive endeavour. Researchers must ask critical questions that challenge their values and biases regarding their participants and the contexts in which they operate. This involves justifying the importance of their research and demonstrating how it benefits the refugee community. This approach aligns ethically with the principles of emancipatory and empowering research, which prioritise amplifying the insights and lived experiences of refugees, ensuring that their voices are represented throughout the research process.

The findings indicate that unethical research is disrespectful, as it results in participants wasting their time without any benefit. Therefore, we recommend that researchers demonstrate humility and reciprocity by honouring their commitments to participants. Additionally, they should provide opportunities for participants to ask questions and ensure that they fully understand all aspects of the research from inception to dissemination.

In conclusion, this project underscores the importance of recognising that ethical issues can arise at every stage of the research process. In refugee settings, this awareness encourages researchers to approach their work with an ethical perspective, carefully considering the risks and implications at all phases of the research: during the pre-research, data collection, and dissemination stages.