Engaging East and Southeast Asian (ESEA) communities in research
A TOOLKIT FOR ACADEMIC (AND OTHER) RESEARCHERS
Developed by SEEAC and ESEA Hub
ACKNOWLEDGEMENTS
Special thanks to Mariko Hayashi (Executive Director) and Nova Fransisca Silitonga (Deputy Executive Director & Programme Manager) at SEEAC for co-designing and co-running this project and for on-going collaborations.
Thanks also to all workshop participants and contributors to the toolkit, including all those who wished to remain anonymous, as well as the following organisations and individuals:
End Violence and Racism Against ESEA Communities represented by Ankita Banerjee
ESA Scotland
Filipino Domestic Workers Association represented by Sheila Esperanza Tilan, Violet Manlangit, Charity Villamor
Hackney Chinese Community Services
Kanlungan Filipino Consortium represented by Michaele Nagac
Vietnamese Family Partnership represented by Quynh Giao Nguyen, Founder and CEO
The Voices of Domestic Workers represented by Grace Nine and Mimi Jalmasco
Minjie Cai, Associate Professor in Human Resource Management, University of Birmingham
Rosa Fong, Senior Lecturer, Film, Liverpool John Moores University
Roderick G. Galam, Senior Lecturer in Sociology, Oxford Brookes University
Eva Cheuk-Yin Li, Lecturer in Sociology (Media & Culture), Lancaster University
Tian Ma, Senior Lecturer in Criminology at De Montfort University, Leicester
Esperanza Miyake, Chancellor’s Fellow & Senior Lecturer in Journalism, Media and Communication, University of Strathclyde
Hau Yu Tam, Independent Councillor
Shzr Ee Tan, Vice Dean (EDI), Royal Holloway University of London
Natalie Sedacca, Assistant Professor in Employment Law, Durham University
The toolkit is co-authored by Diana Yeh and Angeli Romero. The project is funded by the Participatory Research Fund, City, University of London.
For the most up-to-date version of this toolkit, please go to https://www.eseahub.co.uk/. This work is licensed under Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International. To view a copy of this license, visit https://creativecommons.org/licenses/by-nc-nd/4.0/.
ENGAGING EAST AND SOUTHEAST ASIAN (ESEA) COMMUNITIES IN RESEARCH: A TOOLKIT FOR ACADEMIC RESEARCHERS
INTRODUCING THE TOOLKIT
What?
A toolkit of principles, values and best practices to guide academic researchers on how to engage with East and Southeast (ESEA)1 communities and individuals ethically, responsibly and sustainably. This toolkit is co-created by Southeast and East Asian Centre (SEEAC) and its community members, ESEA community organisers and ESEA Hub, led by Dr. Diana Yeh and Angeli Romero.
Who?
This project has been conceived and developed by ESEA Hub in conjunction with our community partner, SEEAC, following engagements in the project Responding to COVID-19 Anti-Asian Racial Violence through Community Creativity, Care, Solidarity and Resistance.
ESEA Hub began in 2020 with funding from Resourcing Racial Justice in response to the rise in anti-Asian racial violence during the COVID pandemic. It seeks to empower individual and community capacity to respond to racial violence by holding space – and acting as a hub – for networks of community care, resistance and solidarity.
Southeast and East Asian Centre (SEEAC) is a community organisation for and by migrants, refugees and people seeking asylum from Southeast and East Asia and people of these heritages living in the UK. They provide essential community support services on issues around welfare, immigration, employment, healthcare access, racism and discrimination, mental health, as well as gender-based violence and exploitation. Based on their experiences as a userled grassroots organisation, they also deliver advocacy and campaigning work to address intersectional challenges faced by marginalised and under-represented groups of the communities, such as precarious migrant workers, asylum seekers, survivors of trafficking and labour exploitation, women and people of marginalised genders.2
1 ‘East and Southeast Asian’ is used to refer to people in Britain who identify their heritages as connected to regions in East and Southeast Asia even though they often don’t identify with those nation-states. While borders are always contested, the region includes places in East Asia such as China, Hong Kong, Japan, Macau, Mongolia, North Korea, South Korea, Taiwan and Tibet. It includes places in Southeast Asia such as Cambodia, Laos, Myanmar, Thailand, Vietnam, Brunei, East Timor, Indonesia, the Philippines, Malaysia and Singapore.
2 https://www.seeac.org.uk/whoweare
Why?
Invisibility of ESEA Communities in the UK
Building on four years of work with East and Southeast Asian (ESEA) communities in the UK (see https://www.eseahub.co.uk/), this project offers a toolkit to support academics and other researchers to engage with ESEA community organisations and individuals ethically and sustainably. Despite standard academic principles and protocols of ethical research, this is important due to post-COVID increased interest in (but concomitant lack of knowledge of) ESEA communities in the UK, who are an invisible and overlooked group (Yeh 2021), even in migration and race scholarship. Both community organisers and academics in the project identified the significance of this toolkit in this context in order to a) build acknowledgement of ESEA migrants in the UK and b) attend to the specificities of the diverse communities brought together under this term:
‘It's really challenging, how to speak about the importance of this with our peer researchers. Asians are not really acknowledged as migrants in the UK. And then what is the difference between Asians and other minority groups? We have a specificity that should be also considered.’ (Community organiser)
Unique Specificity of ESEA Communities
This specificity is not only cultural, but also relates to racialisation processes, such as the construction of ESEAs as a ‘model minority’ (see Yeh 2014), and its impacts, which differentiates ESEA migrant communities from other groups. However, it also extends to a wealth of specificities within ESEA communities, which pertain to a range of issues, from geopolitical and political contexts of migration, historical and generational traumas, and migratory routes, experiences and challenges, which are further shaped by class, gender, sexuality and other axes of oppression.3
‘I've worked with race-based organisations that have these toolkits or guidances, but… I find, much to my frustration, East and Southeast Asians are often missed out or invisible, or get subsumed in general conversations about race… I find it frustrating, having to even explain East and Southeast Asia. I've been told ‘Oh, but race doesn't concern you'… East and Southeast Asians are a racial minority, and in that there are also commonalities, but also specificities around particular specific traumas, specific ways we are read.’ (Academic)
The need to build good working relationships between ESEA communities and academics is particularly important given the perceived value of scholarship among ESEA organisations and communities:
3 For a non-scholarly introduction to ESEA communities, please see ESEA Hub, especially the Introduction to ESEA Heritage Month: Expanded Transcript and the Mini-Talk series.
‘If no one knows, how can you provide the evidence, and how can you let society or the government know what your situation is? I love researchers to spread out the news about what we are fighting for.’ (Community organiser)
History of Lack of Care
Our recent work with ESEA organisations has shown that a lack of knowledge, guidelines and protocols – and care – for ethical community research engagement has left already resourcestretched ESEA organisations and individuals taking on additional unpaid labour, including emotional labour, leaving them feeling uncared for and exploited by academic and other researchers.
‘Often our engagement with the researchers and other people who have consulted us have left us questioning whether this research, particularly the process of research itself, conducting research itself, was really considerate enough for the people who participated, and also for the community as a whole’. (Community organiser)
This toolkit outlines key considerations on how to engage ESEA communities and identifies community organisations’ expectations of researchers. It provides the means of reducing the likelihood of the exploitation of ESEA organisations and their members as token research participants. It has been developed to a high level of ethics and care as it caters to SEEAC’s work with precarious migrants, refugees and vulnerable individuals but its principles are applicable to research with other ESEA communities.
It is also anticipated that community organisations and potential participants will be able to use this toolkit (especially the checklist) to inform themselves of their rights and protections.
‘Once it’s out, it will all go to your hands, so if approached by a researcher, you can just check the list of when you've asked the right questions and everything. So, I hope this is all going to be useful for all of us.’ (Community organiser to participants at the Participant workshop)
The toolkit is a live document and we welcome your comments and suggestions for improvement. To share your feedback, please click here. We will acknowledge contributors to updates of the toolkit, unless you wish to remain anonymous.
METHODOLOGY
After discussing and agreeing the initial idea, SEEAC and ESEA Hub co-designed, co-developed and co-delivered four participatory research workshops, which focused on:
1. Identifying concerns and struggles based on previous experience of ESEA community members with academic researchers.
This was an in-person workshop attended by fifteen (15) SEEAC community members.
2. Identifying best practices and ways to work with ESEA migrant organisations.
This workshop brought together nine (9) community organisers online to discuss and share their experiences and learnings from previous partnerships.
3. Identifying academic practices, experience, and capacities in community engagement research projects.
This online workshop brought together seven (7) academics to feed back on the findings and to balance perspectives by taking into consideration their capacities and limitations. While the invitation was open to a range of ESEA and non-ESEA scholars, the workshop was attended only by 7 ESEA academic researchers. One additional scholar from outside the ESEA community provided feedback via e-mail.
‘You also invited a lot of non-ESEA academics, and clearly there are none here. But it's exactly that. I think it's really important to engage the non-ESEA academics because oftentimes, it would actually probably be more useful for them, because there's a lot of specificities to do with our culture and groups that they’re not aware of.’ (Academic)
4. Consulting and validating key findings and draft toolkit with SEEAC community members and ESEA community organisers.
This online workshop was attended by six (6) out of the twenty-four participants who participated in workshops 1 and 2 in order to validate the toolkit by providing attendees with the opportunity to provide feedback on the toolkit and make any further necessary suggestions.
GUIDING PRINCIPLES
The following principles guided the development of the toolkit. These principles were identified from the findings of the participatory research workshops held with ESEA community members and leaders.
1. Participant-centred and trauma-informed
2. Community-centred
3. Holistic approach
PARTICIPANT-CENTRED AND TRAUMA-INFORMED
‘Service users, always first.’ (Community organiser)
All research with ESEA communities needs to be participant-centred, that is, to prioritise participants’ well-being, values and desires so that they can enjoy a sense of ownership and empowerment through the research. It also needs to be trauma-informed – grounded in an understanding of trauma and responsive to its complex impact, so that participants do not feel exploited or re-traumatised. These principles emphasise the physical, psychological and emotional safety and wellbeing of participants, create opportunities for growth, healing and empowerment and ensure the research is of benefit to participants and the wider communities to which they belong.
‘Many of the research topics that we are approached about involve some of the most sensitive and sometimes most strong, traumatic experiences of people's life. It's very, very, very important to make sure researchers do take care of the wellbeing of the people who participate in the research and their stories before we commit to work with them.’ (Community organiser)
In the workshops, community members and leaders identified the following as foundational to a participant-centred and trauma-informed approach:
BUILDING TRUST AND RAPPORT
ESEA migrant communities are composed of diverse groups of individuals, each with their own migration story and experience. In our workshops, participants discussed how, despite standard academic principles of ethical research, they found that researchers did not spend time to build relationships with them, understand them or earn their trust. Some community members said they didn’t know what consent forms were or what they were for and often signed them without reading or fully understanding them. Participants described how they were hesitant to share their stories and experiences in these contexts, especially when the research touched on sensitive issues, such as immigration status or exploitation. Community organisations stated
that participants often made up stories for researchers because there is no trust and because of fear of immigration authorities.
‘Some of my friends agreed to take the interview with one of the researchers that I mentioned, and he told me that all the information that he gave, or most of the information he gave, was not the truth. It was just said in a way that can please the researcher without revealing his vulnerable part or his true facts. So that is not useful at all for the researcher.’ (Community organiser)
In order to nurture genuine trust, community members and organisers emphasised the importance of building meaningful, ‘dense’ and long-term relationships. Some advocated ethnographic and even longitudinal research. While this may not always be feasible, they raised an important possibility that researchers can consider undertaking voluntary work for community organisations as a means of building trust and learning how best to support the community, while recognizing that hosting volunteers can also burden community organisations in terms of time. Participants also highlighted how learning more about the researcher and their own motivations in doing the research could help build trust.
SAFEGUARDING
Safeguarding broadly means protecting a person's health, wellbeing and human rights, and protecting them from harm, abuse and neglect. Workshop participants highlighted the importance of safeguarding their communities and how this has been largely overlooked by researchers who have engaged them in the past. Specifically, they pointed out the absence of procedures to safeguard participants' well-being before the interview with a pre-interview care session, during the interview and after the interview with a follow-up on their well-being. As a result, participants felt used, causing them to distrust researchers.
The research methodology and the way questions are posed can also play a role in protecting participants from harm. Researchers can actively inform participants that they do not need to speak about specific experiences of exploitation or trauma as a means of ensuring that any sharing of lived experience of trauma is participant-led.
Community organisers and participants also spoke of experiences of online research, where academic researchers would join community social media such as Facebook groups and use members’ comments in research without seeking consent from individual posters. This left them feeling that their privacy had been violated. Researchers should always announce their presence and research intentions to communities and seek consent to use quotations, even if found on public chat forums.
COMMUNITY-CENTRED
When engaging ESEA participants in research, the community must be at the centre of the process. This means that the interests of the diverse community and its members should be at the forefront of all research activities. A community-centred approach recognises that each ESEA community has unique needs and experiences that should be taken into account when conducting research.
‘Given the historical and generational trauma experienced even within the Southeast Asian communities, we understand that there are huge differences historically. And also there's historical relations that need to be addressed and understood’ (Academic).
These differences and the specificities of each ESEA ethnic community – and of particular groups within them – means that it is important that researchers do not rely solely on one community leader as gatekeeper, but reach out to a range of organisations It is also crucial to involve community organisers and members in the research from the very beginning, ensuring their expertise, active participation, input, and decision-making power is centred throughout the process. It is also vital that the researcher also acknowledges and shapes their research plan in light of what research has been already been conducted by the community organisations. This ensures that research questions and methodologies are relevant, respectful, and aligned with the community's priorities and values.
‘Often we come up with research ideas, and we try to find a community and try to gain access. And actually, we often neglect the critical role of the community, the existing organisation that is already doing the work.’ (Academic)
‘It's interesting that at the end of our conversations, I feel like there's a very clear purpose for the participants when they come to the research. The first thing is they want to see a policy change to directly change their life. Participants really have a clear expectation on this. There should be, like, a change that they can see. And the second thing is the purpose of representation. They want to know that they matter.’ (Community organiser feeding back participants’ discussions, Participant workshop)
Workshop participants shared some examples of how community organisation interests could be better considered by academic researchers. They observed that there has been a lack of recognition of the immense emotional and other labour community organisations take on during research engagements and a lack of consideration of the infrastructural capacity required to support researchers. For instance, community organisations need to manage expectations of community members who have practical needs and explain that the research will not yield immediate practical results nor policy change. Another example given was providing emotional support and securing participants' well-being, especially after an interview that was insensitively conducted.
‘When you hear people's story, the issue is going to come up that people need support, and that is also the continuous work of research. The researcher can't just like, come and get the information and leave them with the problem.’ (Community organiser)
Community organisers also spoke of 'facilitation guilt', which refers to feelings of guilt for facilitating access to members if the research was poorly conducted. There was also the worry for organisations that facilitating exploitative research could rupture relationships with their members, who might even stop accessing services as a result.
‘Service users might feel used, and that might break the trust between the service provider, which is the organisation, and the service users, and that might put them off from using services, or they might feel like there's been a breach in confidentiality – that we have spoken to other people or researchers about the[ir] experiences.’ (Community Organiser)
HOLISTIC APPROACH
Academic researchers must adopt a holistic approach when engaging ESEA communities in research. This entails recognising and respecting the cultural, social, and historical contexts of ESEA communities and how their experiences across a wide range of contexts shape them and their experience of the research. For example, legal status, political crises in home contexts, or previous experiences with UK officials, or of being the subject of research, whether by academia, state authorities or the media, might impact their perceptions of the researcher and the research, and their willingness to participate or to engage with aspects of research, such as informed consent.
‘A couple of people have said, "I don't want to sign. I don't like signing in and going into the building." It's basically because that's what happens in immigration detention. Sometimes that's what happens. The checkpoints in the countries that have checkpoints that they have to go through as well. It's not because they don't trust the research. It's just that the practice itself is something that’s intimidating for some people with certain experiences.’ (Community organiser)
It requires researchers to consider the diverse needs and priorities within ESEA communities. This includes acknowledging the intersections of race, ethnicity, gender, sexuality, age and language, as well as legal and socioeconomic status, among other factors. Researchers need to inform themselves about the impact of intersectionality in their work, especially culture and class gaps, and must work towards inclusive and culturally responsive research practices that address these unique needs.
A holistic approach also means recognising and addressing potential barriers to participation, such as language barriers, historical trauma, cultural sensitivities, and researcher positionality. Researchers should strive to create safe and welcoming spaces, provide language and other
support, and ensure compensation or incentives for community members’ time and contributions. It requires researchers to be self-reflective, culturally humble, and willing to adapt their research methods and approaches to meet the needs and aspirations of the communities they are working with. A further way of achieving this is to re-balance the power dynamics of research, by recognising the expertise of community organisations and members and requesting (capacity allowing) (paid) training, advice and consultation to the research team.
KEY ISSUES RAISED BY ESEA COMMUNITY MEMBERS AND ORGANISERS
DURING RESEARCH DESIGN AND PLANNING PHASE
1. THE RESEARCH TEAM
What is the issue?
Participants discussed at length the importance of who the researchers are (researcher positionality). Many emphasised feeling more comfortable with researchers from the ESEA community, who seemed more ‘relatable’ and supportive and easier to trust.
‘What's also positive, I think, is the fact that the people administering the forms, or giving the forms to us are also from the same community as we are, which makes it more, um, relatable for us. It's easier to take.’ (Community member)
‘Your approach to us is different. You are more down to earth. So, we don't have a background question. Your approach is different, and you support us because you already know us, the way you talk, you explain.’ (Community member)
‘It would be good to include a member of the community in the interview to help build more trust.’ (Community member)
‘If the researcher has lived experience, it's pretty obvious that they will be a lot more culturally sensitive, that's not always guaranteed, but yeah, that usually helps.’ (Community Organiser)
However, some highlighted that even if the researcher was from an ESEA background, if they did not know them, trust still needed to be established. In some cases, due to (geo)political conflicts in Asia, a researcher’s Asian background could even be more worrying for participants. What was most important was an understanding of the researcher’s motivations and political stance.
‘If somebody approached me even if they're Asian, I would always ask, ‘why are you asking me this?’ It's not being critical. I'm not being paranoid. Because of my situation, I have to be very careful. I will not just jump in the frying pan. Even
though you are from Asia, Southeast Asia or Philippines, I'm very sceptical about what issues you are standing for. So it's not automatic.’ (Community member)
‘I don't trust anyone unless I have been with them or know what they are talking about or what they are fighting for.’ (Community member)
It is therefore necessary for researchers to be open to sharing information and answering questions about themselves so that participants can understand who they are. Academic participants also raised the problematic assumption that ESEA researchers are necessarily ‘insiders’ to the ESEA community.
‘I think the[re] is a simple assumption, that researchers should or can best understand their co-ethnics, or sometimes [it is used] in a positive or negative way, like they justify their research project with their identity from a certain ethnic group, [suggesting] they share some kind of comradeship with their research participants.’ (Academic)
What do we need to do?
We need to ensure that we consider the make-up of our research teams carefully. Ensuring that we work with academics from the community, or whom the community already trusts, is important. Those who already have knowledge, expertise and experience of the communities and the issues they face and who understand the goals of the community should lead the research. No matter who the researchers are, self-reflection on our positionality, the long-term building of relationships of trust, and knowledge of the historical traumas experienced by a specific community, is essential.
How can we do this?
- By actively seeking out academics from the community to join and co-lead our teams
- By asking community organisers for recommendations of trusted researchers to approach to join our teams
- By ensuring that community organisers and /or members co-lead on our projects
2. THE PROJECT’S AIMS AND OBJECTIVES
What is the issue?
Participants shared experiences of misalignment (the different goals) of the researcher and of communities, for example, when communities expect immediate practical solutions or support for community members or policy changes that the researcher cannot deliver, or when the policy changes researchers want to make differ from those the community is advocating for.
‘The first instinct from the side of activists is ‘we already see the problem, just help them right away!’ and with the academics, it’s ‘No, we can't, because we're just doing the research and just to submit it to the proper channels, the government to
make change’. But we in our part are: ‘Are we going to just close our eyes? We already heard these people, that they need help! Why can't we do things?’ … it's very difficult … It's frustrating.’ (Community organiser)
‘We've worked with migrant workers, for example. So they do have very, very, very real, practical needs. And it's very difficult, especially when there's language barrier there, to explain to the participants that the research is not going to provide any immediate practical solutions.’ (Community organiser)
Academics also felt this was a challenge:
‘Community organisations may want quite different things out of a collaboration from academics. And this is something that I struggled a lot with as well. I worked with domestic workers in Singapore, and they want quite different things in terms of quality of life or policy change. And how do we manage all that when we go about running a project and consulting? You can't please everybody, and you have limited resources and it’s very, very difficult, but I feel that we should not aim to make things perfect but aim to get something happening.’ (Academic)
Community organisers also pointed to instances where researchers were seeking affirmation of their own assumptions rather than genuinely wanting to investigate an issue, or were unclear about the purpose of their research, and lacked clarity as to how policy changes could help the community. In these cases, the research could in fact be used in ways that ended up harming the community.
‘I think we need to be clear about what kind of policy change in order to participate… [sometimes] yes, the intention is right, but without clarity of what kind of solution would help - instead, often they were being used by those who wanted to advocate [for] immigration control.’ (Community organiser)
What do we need to do?
We need to ensure that the research is beneficial to both the researcher and the community, that its goals and remit are clearly laid out and understood by all, and that we consider how our research may be used by others and impact on the community in unexpected ways.
How can we do this?
- By investing in time and effort to build understanding of and relationships and trust with community leaders and members
‘One other thing that we discussed is building trust. So, like, not the first time meeting and immediately interviewing, but researchers can also spend time to get to know communities first. The communities also have a time to really understand the person and what they want to do and why’. (Community organiser)
- By co-designing and co-developing the research project aims, objectives, methodologies and outputs with community leaders and members
‘They have a lot of risk to themselves and sometimes they might question what they’re doing this for.’ (Community organiser feeding back participant discussion)
‘I always ask, “How is it going to help us? How are we going to benefit from your research?” And my expectation is that it would really help to raise awareness … and make policies more beneficial to migrant workers.’ (Community member)
‘There is a need for researchers to design research that would make participants research collaborators rather than just sources of data. I am in awe of how good they are in terms of how they think about their situations. They're capable of theorising, of reflecting critically on their experiences… then we could also look at them as co-authors of outputs.’ (Academic)
- By being clear and transparent about expectations and outcomes of the research on both sides
‘I feel like for us as an organisation, managing expectations, and the participants really understanding how the data that they're providing is contributing to this sort of wider research, or if it’s something that's more specific to one policy.’
(Community organiser)
3. THE PROJECT’S RESEARCH DESIGN AND METHODOLOGY
What is the issue?
Community organisations and members shared that when researchers did not take time to build rapport with community members, and employed invasive research methods, such as interviewing participants about traumatic experiences, community members would often not tell the truth or were left feeling violated or distressed.
‘I've heard stories from some service users who had no pre-care or debrief. They have been traumatised by the whole experience.’ (Community organiser)
What do we need to do?
We need to ensure that research design and methodology flow from the principles of participant-centred, trauma-informed research.
How can we do this?
- By working with community organisations to design research methodologies and conditions that are culturally responsive, suited to sensitive topics and specifically prioritise members’ well-being. This needs to involve planning and budgeting for:
o Identification of appropriate community members to take part in the research
o Pre-research care sessions for community members
o Mental health support during the research
o Interpreters’ translation during the research
o Potentially engaging community researchers to facilitate (and not depending on interpreters with no research experience to facilitate)
o Post-research care and debrief sessions
The identification and pre-care sessions should be led by community organisations, community support workers or mental health workers and/or other people trusted and recommended by organisations and take into account specific requirements, such as around language, ethnicity and gender.
As it was acknowledged that researchers and organisations do not always have capacity to offer mental health support, one community organiser suggested that individuals who are at high risk (in terms of for example, mental health, immigration status, etc.) should not be involved in research if the researcher is unable to fund this support during and after the engagement.
- By recognising both the emotional labour and the time required by community organisation members to undertake this work.
‘Researchers and journalists [should be] aware that when they involve service users in their work that means that there's time that can't be spent on other projects that it would be good to compensate for.’ (Community organiser)
- By working with participants to ensure the research methodology is designed so that the process of participating in the research itself (and not only the outputs of the research) will directly benefit participants or impact on their own circumstances, is worth their while, and empowers their community.
‘So providing protection for wellbeing, and also taking a process that gives opportunities for the members of the communities, for example, to learn new knowledge skills, to empower themselves, to connect with the supportive network during the process of the research’. (Community organiser)
DURING THE RESEARCH PROCESS
1. PARTICIPANT ORIENTATION
What is the issue?
Participants recounted situations where they felt uninformed about the research project and the process, and instances where they were either not provided with information and/or consent forms or were given forms, which they signed without a proper understanding of what they were agreeing to. In the first workshop, after we handed out and discussed consent forms, it transpired that some were unaware of the standard academic process of gaining informed consent:
‘There's a lot of people saying that they didn't know about this thing [the consent form] before. And thanks to the consent form, they now know that, okay, this entity exists ’ (Community organiser feeding back participant discussion)
‘Sometimes they forgot the name of the researcher and sometimes on the way they forgot what the workshop is or what is it for – they're not informed [that] they're going to be given an information sheet. Like they know about the consent form, but they don't know that there’s going to be an information sheet.’ (Community organiser feeding back participant discussion)
What do we need to do?
We need to invest time and care to communicate clearly the research project, processes, expectations and roles.
How can we do this?
- By taking care to explain the information sheet and consent form to participants thoroughly, highlighting their rights & protections, in a language they understand (or resourcing the community organisation to do so)
- By giving enough time and space for participants to read and understand forms properly.
‘I suppose that you can take your time and read it slowly. But, you know, in that moment, you just think…the researcher looks so bored, I should just get it done.’ (Community member)
- By outlining how their data is processed, specifying how data will be stored and for how long, and ensuring they understand the option to opt out of the research project and have all their data deleted.
‘I hope that the data will be safely stored. But how exactly will it be [secured]? I mean, it's under the law, but is this going to be in a locked room, like in a specific folder?’ (Community member)
‘I think it sometimes also includes the information on how long [the researchers] are going to keep the data as well? Yeah, because I was in the field 15 years ago. But then the same data are actually used now, it’s only after a certain period of time
when I found out they still stored my data. So I'm questioning why.’ (Community member)
- By ensuring that all forms given to participants contain updated contact details for the researcher, data controller, and of the academic institution and that they know they can contact them or ask for a trusted person (such as community organisation leaders) to contact them on their behalf, if they feel there are problems with the way the research is being / has been done. The relevant contact details should be flagged to community organisations and members.
‘Apart from having the consent form, which obviously says that their information will be kept confidential, there must be some additional layer of assurance that the information will be kept strictly confidential, including giving the consequences of what would happen if, negligently, the researcher make it disclosed.’ (Community organiser)
- By including in consent forms the clause of providing participants and community organisers with draft outputs prior to publication for review and feedback
‘Proper consent means … as a condition to take part, explicit agreement on the disclosure of a draft output prior to public publication, and not to take part unless [researchers] include this clause in the consent form.’ (Community organiser)
2. ACCESSIBILITY
What is the issue?
Participants expressed several concerns about academic research, in relation to the language used and the cultural understandings expected. They raised issues about the use of English, and how language barriers made them feel hesitant about participating in research activities. They also spoke about the inaccessibility of academic and legal terminology and expectations of shared knowledge. This could lead to misunderstandings and feelings of alienation.
‘Sometimes when being interviewed in English, you misinterpret, and then you give the wrong answer.’ (Community member)
‘A lot of people were talking about some legal terms that they are not familiar with or, or again, with the privacy law, I don't think a lot of people [realise] the differences between countries that have different rules.’ (Community organiser feeding back participants’ discussions, Participant workshop)
‘They also talked about the use of Eurocentric language and how it alienates people's experiences, like when researchers use a lot of academic terms in interviews, like, even, about the level of consent. That's a lot already. And for a lot
of us who aren’t first language English speakers. It's like, what's going on?’
(Community organiser feeding back participants’ discussions, Participant workshop)
What do we need to do?
We need to make sure our communications are clear and understandable.
How can we do this?
- By collaborating with academic researchers from the community, enabling research to be conducted in participants’ mother tongue or a language they understand fully
- By checking with community organisations if community members would prefer information and consent forms translated and/or interpreters present during the research
- By ensuring our language is as accessible as possible and avoiding any legal or academic jargon
- By providing alternatives to written formats, such as verbal or video explanations
POST-RESEARCH PHASE
COMMUNICATIONS
What is the issue?
Participants stated that they never hear from the researcher after their interview, and they feel used and cast aside. Participants want to know about the development of the project and final output. They want to know that the researcher did what they promised to do.
‘One thing that's highlighted was the importance of after the research. So, what happens after the research? Is there an output? Just being given a hard copy of that is very important.’ (Feeding back participants’ discussions, Participant workshop)
‘I think the biggest gripe might be people interviewing me or colleagues, but then the work afterwards sometimes just disappeared. There was no kind of follow up.’
(Community organiser)
What do we need to do?
We need to ensure we communicate with participants effectively after the research has been conducted about the outcomes and outputs of the research.
How can we do this?
- By informing participants that they can access the researcher, before, during or after the research, but also to manage expectations with regards to researcher availability
- By informing participants of the date at which they can no longer withdraw their contributions
- By integrating post-research communications into the research plan and timeline
- By sharing any outputs of the research with participants and ensuring participants are given and aware of the timeframe for responding
- By ensuring participants are invited to attend any dissemination events
- By ensuring participants are kept informed about any arising impacts from the research
- In the post- research phase, we can also continue discussions with participants about how we can develop future research plans that will benefit the community