Ethical considerations of ‘going public’: public and media co-dissemination of research findings with refugees

ABSTRACT

Collaborative dissemination of research findings in the public and media spheres has the potential to reach large audiences, enhance forced migrants’ political participation and impact policies. ‘Going public’ further requires both researchers and forced migrants to engage visibly in a sphere that is often unexpected and less familiar to them. This paper discusses the methodological and ethical challenges and possibilities surrounding joint dissemination, drawing on a case study of public and media co-dissemination that occurred as part of an anti-deportation public campaign. In 2018, the Israeli government initiated a forced deportation plan aimed at deporting refugees to Rwanda. The authors had previously conducted research exploring the journeys of refugees who ‘voluntarily’ departed Israel to Rwanda, revealing that the deportees were pressured to embark on life-threatening journeys, eventually gaining protection in Europe. The findings were collaboratively shared through various activities, such as media interviews, public events, advocacy and cooperation with civil society organisations in Israel and globally. This paper discusses the three main aspects derived from our experiences: power imbalances and divisions of roles, consent as a process, and re-traumatisation and agency. Finally, ethical and practical recommendations for mitigating some of these challenges are offered.

KEYWORDS:

• Forced migration
• participatory research
• public and media co-dissemination
• ethics
• trauma

Introduction

The dissemination of research findings is an integral part of any research project, including research with forced migrants in precarious situations. This is especially relevant in participatory research, which emphasises the use of findings to create and engage in actions for social change (Halilovich 2013; Shdaimah, Stahl, and Schram 2011). Yet, dissemination remains underdeveloped practically and theoretically. Thus, we aim to fill this gap by discussing the methodological and ethical challenges of collaboratively disseminating research findings with forced migrants based on a case study.

The comprehensive body of knowledge on methodological challenges and opportunities in research with displaced populations has pointed to the tensions between viewing refugees as a vulnerable group that requires extra protection in research contexts, and emphasising their autonomous decision-making and agency (e.g. Ellis et al. 2007; Gerver 2013; Gifford 2013; Hugman, Bartolomei, and Pittaway 2011; Pittaway, Bartolomei, and Hugman 2010). Nonetheless, an ongoing discussion has revolved around the complex intersecting issues of power relations, confidentiality and consent, as well as the challenges of minimising the risks and harm in research with people who have experienced multiple traumas, often living in precarious legal situations and under structural social marginalisation.

In the past two decades, participatory research has gained increasing attention in the social sciences as an ethical perspective and research method. Such an approach offers a way to mitigate some of the inherent power imbalances in research with marginalised communities (e.g. Ellis et al. 2007; Hauber-Özer and Call-Cummings 2020; Lenette, Cox, and Brough 2015; Mikesell, Bromley, and Khodyakov 2013). Furthermore, participatory research, also interchangeably termed community-based participatory research and collaborative research, involves the co-creation of knowledge, inviting people with lived experience to become active members in all or some phases of the research process (Shdaimah, Stahl, and Schram 2011; Wilson, Kenny, and Dickson-Swift 2018). This research method has been increasingly used in research with refugees, asylum seekers and internally displaced people in various settings, such as refugee camps (e.g. Hugman, Bartolomei, and Pittaway 2011), health and mental health services (e.g. Gottlieb et al. 2017; von Unger et al. 2022), refugee accommodation centres (e.g. Donnelly, Raghallaigh, and Foreman 2019) and services for refugee women affected by domestic violence (e.g. Sullivan et al. 2005). Adopting the participatory research approach has the potential to democratise knowledge production, minimise researcher-participant power imbalances, and enable an understanding of displacement from the perspectives of the people experiencing it themselves (Weber 2019).

The importance of sharing the research findings together with all research partners beyond the academic sphere is highlighted in participatory research theories and models (e.g. Shdaimah, Stahl, and Schram 2011; Tandon et al. 2016). Yet, many of the existing debates on ethical and methodological challenges in participatory-designed research with forced migrants still focus on the phases of study design and implementation (e.g. Mikesell, Bromley, and Khodyakov 2013; Pittaway, Bartolomei, and Hugman 2010; von Unger et al. 2022), giving only little, if any, attention to the discussion of collaborative dissemination. This could be linked to the fact that, while dissemination through publications and conferences is an integral part of academic labour and an indicator for evaluation, non-academic dissemination is not often funded and is considered challenging as well as resource- and time-consuming (Lenette, Cox, and Brough 2015; Sullivan et al. 2005).

Here, we adhere to the definition of dissemination offered by Tandon et al. (2016). Accordingly, dissemination entails the presentation of data in multiple creative forms (e.g. video, theatre, written materials), in ‘any and all forums where results might have impact’ (3), including, but not limited to, media, public meetings, and informal community settings. Importantly, we differentiate between academic and non-academic dissemination.

Explorations and writings regarding disseminating research findings collaboratively with participants, named herein co-dissemination, are particularly scarce. When dissemination is mentioned, it is often in the form of traditional dissemination, namely scientific publications and conference presentations, which may only have a limited impact on the lives of those in the affected communities. For example, the ethical considerations of traditional dissemination with refugees, when discussed, have included questions of power-sharing between researchers and co-presenters during conferences and as co-authors in academic publications, such as discussing when and where to publish (Ellis et al. 2007; Sullivan et al. 2005). Despite the growing attention to ethics in collaborative visual methodologies with forced migrants, an assumption has been made that if the data collection phase is participatory, the dissemination practices will also be participatory (e.g. Nikielska-Sekula and Desille 2021). However, without sufficient examples of how participatory dissemination is practiced, the ethical questions related to this method cannot be addressed.

We offer to expand this debate by utilising a case study of a co-dissemination that took place in the context of an anti-deportation struggle in Israel. In 2017, the authors, together with our colleague, (Liat Bolzman), conducted qualitative research that explored the journeys of Eritrean refugees who ‘voluntarily’ departed Israel to Rwanda and, after perilous journeys, arrived to Europe (Birger, Shoham, and Bolzman 2018). The initial phases of the research, including study design, data collection, analysis and writing, were not designed as participatory but rather led by the researchers in a more ‘traditional’ way of knowledge production. In these phases, through a snowball sampling, we reached out to refugees living in Europe who had previously departed Israel, conducted interviews, analyzed the collected data, and published it as an independent research report. Overall, the research findings revealed that Israel’s promise of the protection of refugees leaving Israel and arriving in Rwanda went unfulfilled. In the second phase, which took place in 2018, these findings were co-disseminated by the researchers and refugee participants (named herein as co-disseminators) as part of a larger anti-deportation civil society campaign. The co-dissemination methods mainly included media interviews, advocacy and public events. This phase of collaborative dissemination will be at the centre of our analysis, offering insights relevant to the academic sphere.

In the following, a preliminary definition of public and media co-dissemination (PMC) with forced migrants is offered as pertaining to practices that involve the distribution of the research findings by the researchers and participants in the public (i.e. demonstrations, community events, advocacy in parliament) and media domains (i.e. the press and social media). PMC occurs outside of academic settings and involves aspects of visibility for the researchers, participants or both. Appearing in the public and media spheres, and especially on television, involves making the often ‘invisible’ participants visible, not just in front of community members and academics but also in front of a larger national and international audience. It involves working with different actors (e.g. the media, journalists, policymakers, NGOs), often with less control over the publicised materials. Discussing the ethics related to PMC with forced migrants is essential in light of the growing politicisation of migration (Hutter and Kriesi 2022). This places the responsibility on the researchers to consider the social impact of the research and its use in public and political debates.

After describing the research context and PMC practices, the three main methodological and ethical aspects that derived from these experiences will be discussed: (1) power imbalances and division of roles, (2) consent as a process, and (3) re-traumatisation and agency. Finally, preliminary recommendations will be offered for mitigating some of the challenges of PMC with forced migrants and other marginalised communities.

PMC activities in the context of the anti-deportation struggle in Israel

Israel's policies towards refugees who arrived through the Israel-Egyptian border, mainly from Eritrea and Sudan, are highly exclusionary (Kalir 2015). Although Israel ratified the 1951 Refugee Convention and 1967 Protocol, these were never incorporated into domestic law (Bar-Tuvia 2018). Israel’s recognition rates for protection status are extremely low: for Eritreans, they stand at less than 0.1% (United Nations High Commissioner for Refugees [UNHCR] 2020). Instead, the majority are provided temporary visas that must be renewed every few months, allowing them only the right to stay, without a work permit or health and social rights.¹ Numerous restrictive policies have been implemented over the years vis-a-vis refugees, including incarceration, detention and economic sanctions and accompanied by xenophobic and racist public discourses (Ravid 2022; Tartakovsky and Walsh 2020).

As part of the efforts to pressure refugees to leave, in 2013, Israel initiated the ‘voluntary departure’ policy (VD) and signed secret agreements for the transfer of refugees with two ‘third countries,’ later revealed to be Rwanda and Uganda (Bar-Tuvia 2018). Israel declared that, upon their departure, refugees were to be assisted with a plane ticket, a travel document and a one-time grant of US$3,500 (Population and Immigration Authority of Israel [PIBA] 2018). Between 2014 and 2018, 4,470 refugee men left Israel for Rwanda and Uganda under this policy, the majority of whom were Eritreans (PIBA 2020).

In early 2018, in an escalation of the VD policy, the Israeli Government initiated a new policy, entailing forced deportation to an undisclosed third country, later revealed to be Rwanda. Thus, Israel renounced the so-called voluntary aspect of the previous policy. Beyond a plane ticket, a travel document, and a one-time grant of US$3,500, the deportees were promised legal protection and work permits in Rwanda. Those who refused would be jailed indefinitely in a detention facility in the southern desert region of Israel. This policy was part of a larger trend of externalisation policies among Western countries, whereby extraterritorial state actions were being taken to prevent forced migrants from entering their territories or relocating them to non-Western territories in return for payment (Bar-Tuvia 2018).

In response, a massive anti-deportation public struggle emerged in what became the largest solidarity movement for refugees’ rights in Israel. The public resistance included demonstrations in Israel and other Global North countries, hunger strikes of incarcerated refugees, public announcements by professional groups (e.g. doctors, pilots, social workers), criticism directed towards Rwanda, UNHCR appeals and petitions to the Israeli Supreme Court (Gutman 2018). For a few months, the anti-deportation struggle, led by refugee communities, students and NGOs, was at the centre of Israeli public and media attention. In a press conference in early April 2018, Prime Minister Netanyahu announced that Rwanda had withdrawn from its role in the agreement and that the forced deportation plan was cancelled.

Shortly before the forced deportation plan was announced, we, three Israeli early career women researchers – two social workers (Birger and Bolzman) and an anthropologist (Shoham) – were contacted by several Eritrean refugees who left Israel for Rwanda under the VD policy and reached Europe. We all lived in Berlin at the time and maintained contact with the Eritrean exiles whom we met during their years of work and social activism as part of refugee rights NGOs in Israel. Following the encounters with the departees’ stories, we conducted qualitative research that aimed to explore what happened to those who left Israel for Rwanda under the VD policy between 2014–2016. The study was based on qualitative interviews with 19 Eritrean refugees, 18 of whom left for Rwanda and one for Uganda. The study was then published as a publicly accessible independent research report in Hebrew and English (Birger, Shoham, and Bolzman 2018). The interviews were conducted in Germany and the Netherlands, where most of the participants had been granted refugee status. All interviews were audio-recorded, and seven were also filmed using a video camera.

The findings demonstrated that, contrary to the promises made by the State of Israel, the participants were not granted protection in Rwanda. Instead, once in Rwanda, they were placed in a precarious situation. First, the temporary travel document they received in Israel, the only identifying document in their possession, was taken away from them. They were then transferred to a hotel guarded by an armed guard and prevented, under threat, from leaving the hotel. None of them were given the opportunity to apply for asylum. They were pressured to leave Rwanda and began a life-threatening journey in search of protection yet again. Their lack of identification documents and the money they received from Israel made them vulnerable to robberies, extreme violence, and slavery-like conditions. Their journeys included passing through South Sudan, Sudan, and Libya, crossing the Mediterranean Sea, precarious travels through the EU, and eventually arriving and gaining protection in Germany or the Netherlands.

Once the new forcible deportation plan was announced by the Israeli government, the findings of our research became highly relevant. We decided to engage in publicly disseminating our findings in collaboration with a few of the participants and conducted various PMC activities. In the public sphere, our actions included participating in and organising demonstrations, for example, in front of the Rwandan embassy in Berlin, as well as giving lectures at public events in community centres and universities in Israel and Germany. We also participated in advocacy activities in The Knesset, the Israeli parliament. In the media sphere, we worked with media outlets, such as Israeli and international television, newspapers and radio, and provided the audio-visual materials filmed during the data collection to be broadcast on TV (e.g. Mizrahi 2017). In addition, both the researchers and co-disseminators were interviewed by multiple television and radio programmes and newspapers in Israel and globally, jointly published an opinion column and blog (Shoham, Bolzman, and Birger 2018) and shared the research data with student anti-deportation organisations, which were used in a social media campaign.

During this period, we maintained close contact with the co-disseminators via phone calls, virtual platforms and face-to-face meetings. We also undertook collaborative actions whereby both actors shared the findings regarding the VD policy and its implications. The working model included the researchers having primary contact with the press and stakeholders, especially surrounding media dissemination. For example, we were approached by the press and, in turn, offered the co-disseminators the option to participate in various interviews. This phase of intense collaborative dissemination activities lasted for approximately six months until the deportation plan was officially cancelled by the Israeli government in April 2018.

Methodological and ethical considerations in PMC

In the following, we critically reflect on our experiences of PMC and discuss the three main methodological and ethical aspects that arose from our practical experience.

Power imbalances and division of roles

The first theme addresses the researcher-participant relations as a central site for exploring research ethics in forced migration scholarship (Ellis et al. 2007; Hauber-Özer and Call-Cummings 2020). Our experiences demonstrated that the collaborative aspects of PMC hold an opportunity for shifting (some) existing power imbalances within this relationship. In our case study, the researcher-participant relationship transformed throughout the different research phases. The initial phases of data collection, analysis and writing were led by a more traditional relationship and division of roles between the researchers and participants, meaning that most of the decisions were led by the researchers.

However, the PMC phase enabled a blurring of some pre-existing hierarchies (Shoham, Bolzman, and Birger 2018). Although the inequalities did not diminish, the relationship became more reciprocal, and the roles were redistributed more equally between the partners (Hugman, Bartolomei, and Pittaway 2011; Nikielska-Sekula and Desille 2021). Some of the roles were shared by both the co-disseminators and researchers. Specifically, all were interviewed by the press, lectured as experts in public events, and participated in demonstrations. These activities required us as researchers to ‘step outside our comfort zone’ and undertake roles that were not an inherent part of our academic training, and to share these roles with the co-disseminators. We also shared the position of having less control over some aspects of the PMC, such as the ways in which the press framed the research findings. These shared roles created an opportunity for a sense of mutuality, especially because, in general, most actors had no previous experience with such practices. However, some of the co-disseminators had more experience with the media than the researchers, as they had previously engaged in press interviews and social media campaigns. This created an unexpected shift in some pre-existing hierarchies.

Still, as mentioned above, many aspects of the PMC were predominantly navigated by the researchers as we were the primary contacts for the press and other stakeholders and decided when and where to share the findings. As noted by others, the traditional division of roles are still common in participatory research dissemination, as the researcher often has control over what data and images will be published (Weber 2019). Specifically, working with the media raised questions about who constitutes an ‘expert’ and by whom. Similar questions have been critically developed regarding Indigenous knowledge producers within colonial academic structures. For example, Indigenous forms of knowledge creation are often questioned within peer-reviewed publications (for further reading, see Smith 2006; Smith et al. 2016).

In our case, the media reporters we worked with were eager to interview the co-disseminators to provide what they viewed as firsthand ‘authentic’ perspectives, as well as us as the ‘experts’ on the issue. We had to navigate and negotiate this request by choosing when we, as academic researchers, would be interviewed and when to ‘take a step back.’ In retrospect, our real-time choices were impacted by questions related to the media source type and its centrality and audience, together with considerations of our and the co-disseminators’ availability and emotional resources. These experiences demonstrated that the division of roles in PMC and their attributed meanings are further influenced, contextualised, and constructed by other involved actors, such as the media, in ways that operate beyond the discourse on participatory research.

It is important to acknowledge that, during the PMC, the positionalities and inherent power imbalances informed the division of roles. First, as academics and Israeli citizens, we had easier access to the Israeli media and stakeholders. We had more resources, such as social networks, contacts, time and emotional availability. At the same time, most of the co-disseminators were occupied with the everyday struggles of integration, including the bureaucracy of trying to secure legal status, finding work and learning a new language. Such asymmetric time capacity was also reported by von Unger et al. (2022) in relation to a collaborative research project with refugees, front-line workers and academics. While the refugees and NGO workers were under substantial time constraints, the academic partners had much more time. This may challenge the achievement of egalitarian relations.

Nevertheless, such a division of roles can be beneficial for both actors, as well as for the dissemination itself. In our case, because the researchers handled the relationships with NGOs and the press, this allowed the co-disseminators to focus on sharing their testimonies. This was previously noted by Donnelly, Raghallaigh, and Foreman (2019) in their research with asylum seekers in Ireland. The researchers noted how the partnerships between academia, civil society organisations and asylum seekers enabled maximum media coverage. In this way, the media was able to conduct interviews with asylum seekers while the rest of the team attended other dissemination opportunities.

Second, the impact of time and timing is crucial in PMC and further relates to our positionalities. In contrast to the often-extended time frames of academic publishing, media dissemination surrounding a heated policy and public debate means that the dissemination time is accelerated as the media and public interest in the research findings are often brief. In light of the urgency to act swiftly regarding the anti-deportation campaign, the researchers – who already had contact with the media – often needed to make decisions ‘quickly’ and ‘on the spot,’ which may have impacted the degree of collaborative decision-making and power-sharing with the co-disseminators.

Consent as a process

Securing participants’ informed consent is another ethical consideration with particular implications in the context of PMC with refugees. Here, we explore consent in relation to two different phases of the case study: the data collection phase and the PMC phase. Through this examination, we offer a more comprehensive and processual notion of consent.

Informed consent, in its most basic form, means that participants are fully aware of the aims, methods, risks and benefits of the research and that they voluntarily agree to take part in it (Mackenzie, McDowell, and Pittaway 2007). In practice, the most common way of securing such consent is via a written form, which usually contains the details of the research project and a statement of rights, such as the participants’ right to anonymity and their right to withdraw their participation (Hugman, Bartolomei, and Pittaway 2011; Humpage et al. 2019). Since forced migrants are often viewed as a ‘particularly vulnerable group’ according to standardised research guidelines (e.g. European Commission - Directorate General for Research and Innovation 2020; Gifford 2013) and ethics review boards (e.g. Humpage et al. 2019), existing ethical directions emphasise securing the participants’ anonymity and confidentiality. However, applying a standardised written procedure of informed consent with forced migrants has been problematised for relying on Western and individualised concepts of autonomy (e.g. Ellis et al. 2007); for relying on a signed document, which simplifies a much more complex research relationship (Caeymaex et al. 2023); for being an individualistic process that ignores the existence of collective data or the implications of an individual's participation for their community (Smith 2006); and for being a one-time action (for further reading, see Hugman, Bartolomei, and Pittaway 2011; Mackenzie, McDowell, and Pittaway 2007).

In participatory research, a further complication unfolds, as participation involves an often-inherent contradiction between confidentiality and consent due to the dual roles of being participants and co-researchers (Pittaway, Bartolomei, and Hugman 2010; Wilson, Kenny, and Dickson-Swift 2018). First, the traditional notion of consent, based on a somewhat predictable outcome, is challenged. As research methods are commonly determined by the research partnership, consenting in advance for a not yet determined method is impossible (Wilson, Kenny, and Dickson-Swift 2018). This is also the case for the data analysis phase, which may include a cyclical process whereby the researchers and co-researchers meet to discuss data in a process that generates new insights. Hugman, Bartolomei, and Pittaway (2011) have suggested that when new data is generated in such meetings, the participants should be reminded and should consent (again) to the use of this data.

Second, when refugees act as co-researchers, they take on roles that place them in leading positions. Consequently, they become recognisable, which means they renounce the option of confidentiality in front of their community members. These fluid and often unexpected processes are also the case in the PMC phase. As previously mentioned, this phase involves working with many different actors, the visibility of the researchers’ and participants’ names and faces, and less control over the publicised materials. As such, conceptualising and practising consent in the context of PMC, as well as other research phases, should be informed by a processual notion of informed consent. Hugman, Bartolomei, and Pittaway (2011) defined this form of consent as a process rather than an event, and Mackenzie, McDowell, and Pittaway (2007) named it iterative consent, as it is based on the process of ongoing negotiations and re-negotiations of the roles and obligations in all phases of the collaboration.

In our case study, conceptualising consent as a process could be explored in two different phases. First, consent was discussed verbally and provided in a written form that the participants signed before conducting the interviews as part of the data collection phase. In this phase, some participants were interviewed anonymously, while others agreed to be filmed and consented that the audio-visual materials might be published in the future. Although those who were filmed renounced their anonymity, in the written research report, pseudonyms were uniformly used for all of the participating refugees. Such practice is an almost automized action that Gerver (2013) refers to as a blanket policy, often perceived as a practice of protection. In retrospect, a more processual notion of consent, whereby decisions are continuously negotiated and decided locally and contextually by all actors, could have enabled questions to arise regarding the automatic use of pseudomonas. Discussing the question of anonymity in the written report with the participants who agreed to be filmed could have resulted in a different decision than that of blanket anonymity for all participants.

In the second phase of the PMC, when the media interest in the topic and our research was at its peak, the researchers were approached by the media and activists. We then contacted the participating refugees to ask if they wished to take part in the different activities (e.g. interviews, public events etc.). This meant that some of the participants ‘became visible’ and were no longer anonymous. For some, the decision they made to renounce their anonymity when they were filmed in the first phase became actualised in the broadcasting of the recorded audio-visual interviews during a prime-time Israeli television programme (Mizrahi 2017). Others, who maintained anonymity when they first participated in the audio interviews, now decided to take part in the interviews for Israeli and international media and had leading roles in organising and participating in demonstrations. For example, after a few media articles were published, with the visible participation of a few co-disseminators who had initially refrained from becoming visible, one co-disseminator decided to speak in a public lecture held in Berlin, which entailed being filmed. This co-disseminator later gave an interview to an Israeli newspaper, and his name and picture were published on the front page of the most read newspaper in Israel. His decision to renounce his initial choice of anonymity might be explained by the changes that occurred in his life circumstances, such as acquiring legal status in Germany, which might have increased his willingness to become visible. He may have also been influenced by the extent of the public campaign, thereby seeing others’ participation and experiencing the positive impact this had on mobilising the Israeli public. Nevertheless, although we worked closely together and had ongoing conversations with him (and others) throughout this period, in retrospect, we did not fully conceptualise this phase as a continuous part of the research. Therefore, this remains a question that requires further discussion. Should the PMC phase be seen as one that requires securing co-disseminators’ consent? What kind of information could be shared among researchers and co-disseminators at the onset and throughout the PMC?

From the perspective of iterative consent, some unique benefits and risks surrounding PMC could be jointly re-negotiated and discussed, in particular, the personal and political ramifications of media dissemination. In reflecting on our case study, we realised that the refugees’ visible participation in the face of the wider public and the media had the potential to empower them and others in their community as well as mobilise the public to take part in the anti-deportation struggles, with the aim of influencing policymakers. On the other hand, becoming visible meant that participants might be recognised by friends, family or the authorities in Eritrea, be subjected to criticism, or even have their family back in Eritrea suffer physical or economic consequences as a result of their public appearances (Berhane and Tyyskä 2017). In retrospect, we recognise the influence of our learned Western conceptions about research ethics and academic practices around consent, which are centred around the need to protect the research participant only (Smith 2006). This resulted in not giving enough consideration to the potential impact that becoming visible may have on the participants’ family members and their communities as a whole.

Moreover, as often is the case with media reports, the refugees’ stories might be misused or reported differently from what they intended. Unlike more traditional consent in academic research, whereby participants often have the right (and practical opportunity) to renounce their participation or ask to omit parts of the interview, working with the press includes little to no control over the use of the findings and materials for both the researchers and co-disseminators. In addition, it is impossible to anticipate the ways and for how long the related audio-visual materials will be used in the future (Lenette, Cox, and Brough 2015). These considerations must be put forward, given the assumption that some displaced people may not have previous experience with the press. For example, in their research in a refugee camp, Pittaway, Bartolomei, and Hugman (2010) encountered refugee women who were surprised to find that their images were widely used in books/DVDs many years after the research ended. When they consented in the first phase, they did not understand what this might mean at a later stage of their lives. Here, as offered by Azoulay (2005), it is important to distinguish between the right to be photographed and the right to disseminate the photograph. When people agree to participate in a visual production, it does not inherently mean they consent to when and where their images will be disseminated. Therefore, as much as possible, refugees should also have the ‘right to disappear’ (Prieto-Blanco 2021), meaning the choice to withdraw their consent after the data have been collected or images captured. Although this practice becomes challenging to maintain once the research and visuals are published, this consideration should at least be discussed in practice.

In our case, the researchers were more aware of the potential risks, as we were more deeply embedded in the local Israeli socio-political context and often more experienced in working with the media. In retrospect, we, therefore, held the responsibility to raise such discussions among all of the research partners. First, discussing the co-disseminators’ consent regarding the publication of the filmed audio-visual materials we collected, while emphasising their right to disappear, maintaining that, even after images are produced, there is room for joint negotiation regarding how they should be further disseminated, if at all. Second, researchers should think together with the co-disseminators about the possible reasons to renounce their anonymity, as well as discuss their past knowledge, experiences and expectations (if they exist) with/from the media. This should be done without assuming that the researchers and co-disseminators share a common understanding of the research purpose, notions of consent and perceptions of the benefits and risks (Pittaway, Bartolomei, and Hugman 2010).

In conclusion, it is important to acknowledge that the ability to fully discuss the different risks and benefits as part of processual consent in the dynamic and often brief context of PMC is often limited, especially as part of a public campaign. Illuminating the reasons behind the choice to ‘go public’ is not always possible, and ‘the decision to speak to reporters is not a simple cost–benefit analysis – it is much messier and less rational than that’ (Palmer 2017, 24). Yet, conceptualising the PMC phase as part of the research process could lead to weighing specific costs and benefits for the co-disseminators’ participation and the active involvement of the researchers in providing time and space for these important discussions.

(Re)traumatisation and agency

Participation in PMC often means that co-disseminators share their life stories and trajectories more than once. In the case of forced migrants, who usually encounter numerous potentially traumatic events, this raises some practical and ethical questions in relation to re-traumatisation. The first question relates to the interviews conducted during the data collection. In our case study, when we conducted the interviews, expressions of emotional distress by the participants were common. Some mentioned that recalling the violent experiences during their journeys was difficult. Others paused, teared up or had their voices break. Practically, existing guidelines may offer various pathways for collecting traumatic stories (for example, see Denborough 2005). This may include offering to take breaks or stop the interview completely, emphasising their ability to choose what to reveal, as well as for the interviewer to offer the space to acknowledge/reflect at the end of the interview. Ethically, the existing literature has debated inviting people to recall painful memories for research purposes. Sharing personal trajectories as part of an interview, especially in the context of post-deportation, may involve recalling potentially traumatic events. In this way, researchers may unintentionally re-open wounds by probing sensitive topics (Goodhand 2000), consequently inducing emotional distress and re-traumatisation (Pittaway, Bartolomei, and Hugman 2010; Weber 2019).

The debate on whether participating in research will make life more difficult to cope with due to the difficult memories being revived, and/or whether it might have healing and empowering effects, is ongoing and complex (e.g. Dyregrov, Dyregrov, and Raundalen 2000; Ellis et al. 2007). In general, refugee studies have shifted from a predominantly trauma-focused discourse, which tends to see refugees as victims and shapes research ethics as prioritising protection over respect (Gifford 2013), to a resilience discourse. The latter holds that, despite the pain of recalling traumatic events, re-telling them can have positive effects, such as people re-evaluating the priorities in their lives (Papadopoulos 2007). The mere fact that refugees have survived and often thrived in a new country demonstrates their capacities (Humpage et al. 2019). Moreover, the act of storytelling can be a way for people to restore their continuity and identity, and might have a therapeutic impact (Eastmond 2007; Ellis et al. 2007). In research conducted with Bosnian refugee families, the researchers demonstrated that taking part in in-depth interviews, even when this involved recalling traumatic events, had a mostly positive impact, with almost all of the participants experiencing a feeling of relief following the interviews (Dyregrov, Dyregrov, and Raundalen 2000). The decision to participate in research could also fulfil other needs in relation to family, community and institutional actors, such as conveying family and cultural values, actualising participants’ leading roles in the family or community, and contributing to better services for others in their communities (de Smet et al. 2022).

Keeping this in mind, further questions arise in light of PMC's unique characteristics. First, in PMC, the co-disseminators do not share their life experiences in front of researchers but rather in front of the camera or a larger audience at a public event. Specifically, sitting in front of a camera or a live radio or television broadcast, the presence of a camera, the strong lights and the presence of the television crew could be stressful and overwhelming. Additionally, journalists might have a non-empathic or even hostile attitude toward refugees, or they may not be equipped with a trauma-aware approach. Furthermore, the actual publication of the interview might include expressions of anti-refugee sentiments, and the refugees’ personal stories may be misused by politicians and political anti-refugee groups, which, in itself, may have a re-traumatizing effect. Alternatively, media interviews may offer a meaningful opportunity to utilise one's individual story to impact the views of the public (Bleich, Bloemraad, and De Graauw 2015) and policymakers and, in return, improve the conditions of the refugee communities (Eastmond 2007).

Still, the nature of public and media interviews raises questions regarding the need to support co-disseminators pre- and post-interview. Although we conducted briefing and debriefing talks with the co-disseminators surrounding the media interviews, these were not constructed and conceptualised as part of the ethical guidelines. Elsewhere, Saimon, one of the co-disseminators, reflected that he would have liked us to have assisted more in preparing him for media interviews, including being present when they occurred (Shoham, Birger and Fisaha 2023). It could be that the shift in the division of roles, which placed co-disseminators in a more egalitarian position, led us to too quickly let go of some roles and responsibilities we traditionally hold as researchers.

The second point is that, inherent to PMC the co-disseminators re-tell their story, sometimes repeatedly, after already sharing it at length with the researchers as part of their research interview. Beyond the potential harm of re-traumatisation, as described earlier, re-telling their stories as part of the PMC holds the potential for validation and recognition as a direct result of PMC's visibility. First, as part of the PMC, the co-disseminators had greater ownership over their story by telling it first-hand and without the researchers’ mediation. Such dynamics present the possibility for a greater sense of power as well as personal and political agency. This may also counter the pitfall of documenting refugee stories in ways that reproduce power imbalances and simplified representations (Hugman, Bartolomei, and Pittaway 2011).

Importantly, some co-disseminators were interviewed by the media more than twice. As a result, we encountered the fear of exhausting the co-disseminators. Since the researchers had primary contact with the press, we served as the gatekeepers, often questioning whether we should approach a co-disseminator who had already told their story twice or more publicly. Again, herein manifested the tension between protection and autonomy, keeping in mind that repeating one's story is not necessarily re-traumatizing. For example, as Saimon shared, the fact that he conducted more than one interview with the press had a positive emotional impact, and that telling it again was somehow easier than the first time (Shoham, Birger and Fisaha 2023).

Finally, although an awareness of potential re-traumatisation is important, PMC presents an opportunity for co-disseminators to exercise their agency, not only in their initial choice to participate but also as an evolving experience that is actualised via their participation in the PMC. Co-disseminators’ empowerment can be derived from recognising their competencies in knowledge production and dissemination (Nikielska-Sekula and Desille 2021). Alternatively, the visible, open, dynamic space of demonstrations may serve as a unique opportunity for refugees to put their capabilities and power into practice. In our case study, a few co-disseminators took active and leading roles in organising and participating in demonstrations, mobilising others in their community, and leading the crowd while shouting slogans, thus moving away from being an anonymous pseudonym in a report to being physically and verbally active.

Concluding remarks: implications and a way forward

In this article, we offered a definition of PMC as a unique research phase that involves collaborative actions beyond academic settings and is aimed at social change. This conceptualisation was based on our experiences of co-dissemination with refugees, which occurred as part of a civil society anti-deportation campaign in Israel. PMC, as part of participatory research, holds an opportunity for researchers and people experiencing marginalisation to share the research findings with large audiences, promote the social and political participation of individuals and communities with lived experiences, advance social justice and resist harmful policies. However, PMC also entails particular challenges, as it is a dynamic and often unexpected phase, requiring all collaborators to engage visibly in the often unfamiliar public and media spheres.

Working with the media is the main sphere that differentiates PMC from traditional academic dissemination, yet it receives little scholarly attention. Ethically, our case study demonstrated that encounters with the media hold the potential to blur some pre-existing hierarchies between the researchers and participants, for example, by both actors engaging in similar roles. However, ‘going public’ also means facing the risks of the media misusing the refugees’ stories, their re-traumatisation and the potential for their families and community members to be harmed. Elsewhere, we have suggested that practically addressing these limitations may include collaboration with spokespersons of human rights NGOs who are experienced in working with the media and carefully choosing (when possible) which journalist to collaborate with (Shoham, Birger and Fisaha 2023). These implications are, of course, context-driven and depend on the researchers’ and co-disseminators’ previous experiences and knowledge in working with the press and the current political regime and public atmosphere, which, in turn, impact the press.

Beyond the practical implications, working with the media raised epistemological questions related to the divisions of roles in PMC, such as who constitutes a researcher, an expert, a knowledge producer and a disseminator. In PMC, these questions arise within the media and public spheres when refugees are questioned not only as knowledge producers but also as knowledge disseminators. Even when refugees’ ‘stories’ are heard, the media may still seek to ‘validate’ them through an ‘expert’s’ knowledge. This places a certain responsibility on researchers, positioned as ‘gatekeepers,’ to reflect, negotiate, and advocate with the press or other social actors regarding the knowledge produced.

As we demonstrated, an ethical standpoint that might mitigate some of these challenges is one that strives toward mutual, respectful and reciprocal relations between the research partners and adopts a processual notion of consent (Halilovich 2013; Hugman, Bartolomei, and Pittaway 2011; Prieto-Blanco 2021). From this position, as previously developed by scholars, researchers and co-disseminators will be engaged in ongoing negotiations and discussions related to the meanings and expectations regarding the roles and responsibilities of each partner (Lenette et al. 2019). Furthermore, this allows for the discussion of consent to occur throughout the research process, including during the PMC phase. This includes raising questions, such as: What are each partner’s past experiences and expectations (if they exist) with/from the media? What could each partner achieve and risk by ‘becoming visible,’ based on their positionalities? Who else would be affected by these actions (e.g. community, family etc.)? When, and to what extent, can one change their mind and withdraw from the publication of materials that are already produced? When, why, and whom of all the partners will be interviewed in the media? These and other questions should be proactively discussed, while acknowledging that, as in our case, the action component of turning academic research into social action can occur spontaneously and unexpectedly and demand a quick response (Halilovich 2013). As such, the ability to fully discuss the different risks and benefits in the time-accelerated context of a public campaign is always limited.

Another implication is the adoption of a trauma-informed perspective in PMC contexts where trauma is prevalent. From this standpoint, existing guidelines for collecting traumatic testimonies (e.g. Denborough 2005) could be adopted by the researchers beyond the research interviews and applied when refugees re-share their testimonies in the public and media spheres. For example, in discussions with co-disseminators prior to PMC activities, the researchers could emphasise the co-disseminators’ choice over what to share and their right to stop the interview or withdraw their participation. Additionally, researchers could prepare and debrief the co-disseminators before and after their appearance in media interviews and public events.

A trauma-informed perspective also recognises that, for displaced people, sharing their lived experiences might be challenging, thereby encouraging researchers to look into who the journalists are that will conduct the interview. Here, the researchers must carefully navigate the complexities of recognising that forced migrants are often located in vulnerable social and political positions, due to traumatic experiences and systemic oppression, while adhering to their agency and right to autonomous decision-making. This means the researchers must refrain from adopting an over-protective approach that may result in preventing refugees’ access to media interviews, while still maintaining their responsibilities and acting as mediators who bring the discussion of potential risks and benefits to the surface. Our case study demonstrated the merits of conducting PMC with an interdisciplinary research team. In our case, this included trained social workers who incorporated trauma-aware approaches into the joint work.

Finally, adopting a trauma-informed approach should also be considered in relation to the potential impact of exposure to traumatic stories on the research partners, according to their positionalities and lived experiences. Conducting debriefing and consultation team meetings among the partners could offer support for the team members, including researchers or collaborators with lived experiences of forced migration who may have encountered adversities similar to those explored in the research. Thus, a trauma-informed perspective includes considering the possible effects of exposure to trauma on research team members and offering support when needed.

A possible challenge to engaging in PMC lies in the limitations of the existing academic structures. First, funding opportunities are mostly focused on data collection, analysis and writing, while the action phase remains overwhelmingly unfunded (Sullivan et al. 2005). Moreover, the pressure of academic productivity may mean that scholars tend to focus on the dissemination of publications in the academic sphere rather than the public and media spheres. Second, ethics committees are often unprepared and un-informed regarding the meaning of qualitative participatory research and its unique challenges (Mackenzie, McDowell, and Pittaway 2007; Wilson, Kenny, and Dickson-Swift 2018), let alone the particular considerations of PMC. Thus, there is a need to incorporate the complexities of collaborative dissemination overall and PMC in particular into ethical guidelines in ways that reflect the dynamic and often unexpected nature of these practices.

Another factor that might hinder the ability of scholars to fully engage in PMC is personal constraints. First, taking part in a political struggle may include stressful and emotionally demanding involvement (Birger, Nadan, and Ajzenstadt 2020). This might be exciting and rewarding, but it is also challenging in terms of resources such as time, material resources and the emotional labour involved (Shoham, Birger and Fisaha 2023). Future research could explore researchers’ own experiences regarding their involvement in PMC.

In conclusion, conceptualising PMC as part of the participatory research process, even if other phases such as data collection, analysis and writing are not collaborative, brings the actions linked to advocacy and activism into the academic domain. We call on researchers to consider adopting PMC practices when planning and implementing research with individuals and communities in marginalised positions, while adhering to the ethical and methodological considerations and responsibilities. Beyond the potential of the co-dissemination to expose the research findings to larger audiences and increase social impact, it provides tools for researchers to act socially and politically when encountering harmful policies for and with mobile and other marginalised people.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 African refugees in Israel are officially referred to as ‘infiltrators.’ In the public discourse, they are also commonly referred to as ‘asylum seekers’ or ‘refugees.’ We use the term refugees based on the assumptions that (a) by refraining from deporting them, Israel has, for all practical purposes, recognised their special status and need for international protection; (b) the UNHCR explicitly defines them as ‘people in refugee-like situations’; and (c) Eritreans have notably high refugee recognition rates globally (see Bar-Tuvia 2018).