Factors influencing research participation.

CAB members reported that people are more likely to consent to a research study if the topic of the research benefits them or their families, such as improving their education, career, or health. The idea of helping others through the research also motivated them to participate. Parents were more likely to agree to participate if their children were also involved in the study and showed an interest in it. Even when there is no financial benefit, CAB members were willing to participate if there is a perceived psychological or social benefit for them, including an opportunity to express ideas and feelings, or learn something new, travel to a new place, have a change of environment, or meeting new people: “We get to know new concepts. We get to meet new people. We get mental health support. We go back and talk with our relatives and neighbors about what is happening here” (CAB Member). Additionally, they expressed additional motivations for consenting such as the satisfaction of contributing to the community, making an impact, and helping others.

Incentives and potential coercion in participation.

Nonetheless, financial reimbursements were reported as crucial for some CAB members, especially in difficult financial situations. In the feedback sessions, some emphasized that monetary compensation was not always the most important thing: “...I’m here to learn more, and to express myself. Money isn’t important.” (CAB member). However, another member expressed that: “In the current economic situation, motivation would be less if there is no financial incentive.” Inversely, some NGO researchers pinpointed disadvantages to providing monetary compensation to participants since they: “... would just agree, because they are desperate to receive anything in their state of mind.” (NGO Researcher). Consequently, they stressed that participants may ignore their rights to get some perceived benefits and may feel pressure to participate to maintain financial benefits. Overall, NGO researchers highlighted that incentives do not need to be monetary and may consist of essential contributions to address barriers to participation such as transportation fees, mobile phone data, or childcare. As one researcher suggested, “compensation is important, it doesn’t have to be material all the time - it’s simply what the participants need to be able to participate.” Providing such compensations was seen as helpful in making participation more accessible and inclusive; however, it was essential to ensure that individuals are not forced or influenced solely by incentives.

“Yeah, really this challenging balance of not forcing them by that incentive, but really incentivizing them to participate [...] Yeah, is the incentive, just so strong that if you’re so vulnerable, that actually anything that you get is better than nothing. And then you’re willing to give away your right to not participate just due to the lack of resources that you have? [...] And also, even if you’re told, like, if you withdraw, or if you don’t join, it will not have any consequences on annual receiving nor any other services exactly as P5 said, often that perception is still there, like, oh, but maybe it will have some impact somewhere and the organizations talk among each other and they might tell each other” (NGO Researcher)

In addition, researchers acknowledged that participants may think that they will be rejected from upcoming benefits if they declined to participate in the current activity, and, as with financial incentives, this can cause undue pressure to take part if not managed well.

“If I say no, is it going to impact whether I can attend, whether my child can attend, or whether they’re going to take their funding away? Are they going to not have activities anymore? And so there’s pressure to participate in order to maintain services or maintain the interventions that are being done. So I think that can be an obstacle to people saying no as well.” (NGO Researcher)

Barriers to participation: competing priorities and communication challenges.

CAB members may sometimes face competing priorities in their personal life, causing them to prioritize other things over their participation in research. For example, one participant stated that they had to prioritize something else when their schedule became tight: “... but after a while, a new thing popped up and my schedule became tight. I took what I wanted from my participation, so I prioritized something else.” (CAB Member).

Additionally, low literacy and fear of not understanding the research topic may have led CAB members to a lack of motivation to participate. Shyness, lack of confidence, and auditory problems were suggested to hinder participation. With regards to literacy, CAB members expressed that they might be shy to participate, especially if they feel that they might not understand the information presented to them: “...The language as well. Sometimes, some researchers might mumble some words that we don’t understand, and some people may feel shy to ask about what they mean.” (CAB member). Researchers acknowledged: “...the challenges that we face is how to translate or convey what we want to do in such a way that is completely understandable”. (NGO Researcher). Findings from the researchers also suggested that in research studies, there can be a potential loss of information and meaning in translation, especially if the participant’s dialect or first language differs from that of the researchers, however having a confident and supportive facilitator can help them overcome these barriers. In the feedback sessions, CAB members described there being no problem if they can ask the researcher for clarification if they don’t understand something.

Trust.

The recognition of trust as a crucial element was paramount. CAB members mentioned several factors that influence trust such as being clear about the purpose of the research. When they understood who was gathering their information and why, they felt more comfortable and confident in providing informed consent. Clarity and understanding of all aspects of the research process helped in consenting, as mentioned by one CAB member: “…I do not buy fish in the sea” (a metaphorical way of expressing skepticism when transparency is lacking). They appreciated when all conditions are written, explained, and anonymity is provided, as “…these two factors made us agree to participate in the research: honesty & safety” (CAB Member).

Researcher’s approach.

CAB members emphasized the significance of researchers being welcoming and warm, as this created a positive atmosphere and built trust with participants: “...I don’t like to feel that I am beneath people. That some individual came to give me information. They should use dialogue with us, so I would feel like a participant, not just a recipient. Some people would just state information without listening to your opinions, so you would feel unheard, and you wouldn’t be interested in attending the next session.” (Feedback Session, CAB Member). They also reported that a fostered sense of comfort is crucial, allowing them to relax and engage more openly in the consent process, and that researchers can create this by being professional but also approachable as humans, such as by taking time to build human connections, allowing participants to ‘breathe a bit’ beyond just focusing on the research activities, and giving space for humour and telling jokes. This was highlighted in the feedback sessions by a CAB member:

“You give us a chance to speak, so this means you respect me and respect my time. Also, you’re answering all my questions in a respectful way, even if my questions were insignificant. You’re giving me time to speak. And an important thing is that you told us we have the complete freedom to share or not.”

However, some NGO researchers stressed that rapport building should not be obtained before taking consent, as it might affect the consent process. “…So, it might affect because the person is getting on a level that “ohhh this person is nice” as one NGO researcher indicated. Another one said: “[...] I think that a lot of us, like us as researchers, take the stuff way too seriously. And we take ourselves - not the ethics of consent- but we take ourselves way too seriously. The whole thing about professionalism. I think there’s a degree of being personable, but that you can do it without compromising either the data collection or the research.” (NGO Researcher). In the feedback sessions, it was emphasized that the ideal researcher is expected to strike a balance between being personable and maintaining professional standards during the research process: “it is a delicate balance to find, but I think it’s important to make sure that people are able to say no. But also that people are able to ask questions.” (NGO Researcher)

Trusted actors, channels and locations.

The CAB member’s personal trust in the researcher was mentioned to encompass trust in their confidentiality, trust in the overall process of their work, credibility of the conducting organization, and trust in both the consent procedure and the purpose of the study. Also, the inclusion of local trusted actors in the outreach efforts was helpful. CAB members were more likely to trust research conducted through familiar and trusted channels, enhancing the credibility and reliability of the research. The meeting place also plays a crucial role as it needs to be attractive and accessible, creating confidence and making the cost of participation affordable: “...And we know where you came from, and we know the location of the session. If the session was conducted in somebody’s house, I probably wouldn’t attend.” (Feedback Sessions, CAB Member). Therefore, researchers were asked to carefully consider the location of the meeting and ensure that it is a place that the participants feel comfortable with and can easily access.

According to CAB members, lack of trust poses a significant barrier to participation, extending beyond informed consent. Surprises during research activities erode trust and diminish willingness to engage. One participant expressed: “…Sometimes we participate in sessions and things get delayed, we get surprised each time with new facts, but today I really liked how clear you were with us. However, such experiences make your trust less. (CAB Member).” Past research experiences influenced trust in new studies, with unsatisfactory encounters breeding caution and skepticism.

Time constraints.

Time was identified as a significant barrier to obtaining informed consent in a research project. NGO Researchers in this study reported that researchers sometimes seem to assume that time will not be perceived as a burden for participants, however this was described as incorrect “…we take it for granted… Oh, yeah, they’re just sitting in a refugee camp. Of course, they’ll want to participate in our project, but actually it does place a burden’ (NGO Researcher)”.

One researcher shared their experience with a research participant perceiving the detailed explanations and time-consuming nature of the provided informed consent tool as a “marriage arrangement”. This comparison reflected their perception of the consent process as excessively intricate and unnecessarily burdensome. Consequently, they went on to ask: “…have you come to ask for my hand in marriage?” (NGO Researcher). Hence, the researcher highlighted the importance of informing the participants of the length of the informed consent process and how much time is needed from them to go through it and why. It was stressed on during the feedback sessions that it is very important to be transparent about time commitments needed, and respect participants’ time: “...So I think, yeah, when we talk about the power dynamics, I think we should be very respectful of people who said they want to participate in what we ask them to do.”(NGO Researcher). Researchers suggested that sufficient time should be allocated for the informed consent process, allowing for introductions, question-and-answer sessions, and discussions. They believed that rushing the process is counterproductive and recommended allocating sufficient time for participants to become familiar with the research, seek advice from others, ask questions, and reconsider their decision. Conversely, some researchers expressed frustration and described the consent process as “annoying” and “lengthy” in time; hence, leading the researchers to rush through the process, treating it as a mere administrative task. As a result, participants might not be sometimes not fully informed about the purpose and implications of their participation, reducing the quality of their consent. “… But just almost like a tick the box thing and almost like are you okay with participating? Everyone is fine? Yes, great. Let’s go. Because it is very annoying, and it takes a lot of time” (NGO Researcher)”

Clarity of information sheets.

The information sheet was described by both researchers and CAB members as important to outline advantages and disadvantages of the research and have contact information for clarification. Overall, CAB members held in high regard a clear and honest explanation of the informed consent, which enables them to make an informed decision and feel protected by the consent they signed. They also emphasized that the information sheet: “...should not be that complicated, just simple and to the point.” (CAB member). Researchers reported that lengthy information sheets are challenging due to the potential for participants to become bored or fail to understand them. They suggested the use of summarization and engaging in conversations to supplement the written information sheet. Therefore, researchers emphasized the importance of prioritizing participants’ understanding and obtaining their consent for ethical research and also stressed the need to inform participants about the use of their personal information and the sharing of research results.

Right to withdraw.

CAB members reported that they understood their right to withdraw from the research at any time without guilt or the need to provide a reason. The concept of feeling ‘pressured’ is contrasted with feeling ‘comfortable’ to participate, highlighting the importance of creating an environment where participants have “the autonomy to participate.” (CAB Member) and make their own decisions. NGO researchers, however, reported difficulty in discerning a genuine “no” for participation, from misunderstandings, and knowing how to navigate this while ensuring they prioritize individuals’ autonomy. During the feedback sessions, researchers clarified that participants are not obligated to provide a reason for their withdrawal from the research, but it can be informative to know about their reasons as part of the learning process: “.... So it would be great to ask people, even though making sure that they know that there’s no necessity to provide a reason, it would be interesting to understand why people drop out. Because there could be something, say something about the intervention, they could say something about the instruments that we use, it could say something about the process that we apply (Feedback sessions, NGO Researcher).

Dialogical process.

NGO Researchers highlighted that it is crucial for researchers to understand the importance of informed consent as a dialogical process involving conversations with participants, rather than a mere checklist. Thus, training on the delivery and facilitation of informed consent is a must. One researcher suggested that: “…actually the whole process and the training on what to do with this form, how to convey it, to make it clear [should be done]”.

While researchers highlighted that informed consent is an ongoing process throughout the study, some CAB members viewed acceptance as a commitment and believed that once consent is given, it cannot be withdrawn. They drew parallels between job contracts and informed consent, highlighting the notion that once consent is given, it cannot be withdrawn, similar to a commitment made in a job contract. For example, one CAB member stated: “…it’s like a job contract you do for a while, and you cannot go back if you consent.” This perspective suggested that participants could perceive informed consent as a binding agreement, comparable to the obligations in a job contract. In the feedback sessions, one CAB member acknowledged that if their expectations were unmet over time, they would withdraw but emphasized that as long as there is a signed agreement, they feel obligated to adhere to it: “...Then I would withdraw, since there is no contract. As long as there is a signature, I’m bound by it.”

Gender.

According to the participants, gender plays an important role in research participation, as some people may be more comfortable sharing personal information with individuals of the same gender. Women are perceived to have more domestic responsibilities than men and are often able to work around them to participate in research, whereas men may be unable to participate due to work responsibilities. However, there may be cultural or societal barriers that prevent women from participating, such as men not allowing their wives to participate in research or culturally conservative views towards mixed-gender settings. Ultimately, the topic of the research itself may also influence gender differences in participation, as certain genders may be more familiar or interested in certain topics.

Nationality, stigmatization and exclusion.

Similarly, nationality could be influential as the topic of research may be more interesting or relevant to some nationalities, leading to varying levels of motivation to participate. In addition, participants reported that feelings of exclusion or discrimination based on nationality, race, or refugee status can be a significant barrier to obtaining informed consent. If individuals perceive that they are being stigmatized or marginalized, they will be more reluctant to agree or consent to participate in the research. While this may not directly relate to the consent tool itself, it can significantly affect individuals’ overall decision-making process as one participant pointed out: “… Now we are here all participating together, but some people are racist they would not accept different nationality especially in a group of a certain majority, if a person does not feel welcomed, they will quit, this has an effect, I guess.” (CAB member)

Community and family support.

The perspectives of family members and other community members, such as neighbors, was described by CAB members as a reason to influence consent decisions at times, but this is not always the case. It was reported that some CAB members are more willing to participate in research or share knowledge when it contributes to the growth and development of their community, and that consenting to research is more likely to happen when they know that they will be participating with others from their same community. In these cases, community support was also seen to play a role in addressing literacy challenges by reading and/or explaining information to each other.

Unequal power dynamics.

According to researchers, the pre-existing unequal power dynamics already present between NGOs and beneficiaries due to the structure and nature of humanitarian aid and services was felt to play out during research projects involving vulnerable populations. They highlighted how repeated research on vulnerable populations can perpetuate unequal power dynamics, where researchers and NGOs dominate the narrative and resources, potentially overshadowing the voices and agency of the displaced populations themselves, leading to vulnerable participants not believing that their voice matters: “.. we are not completely genuine within the entire sector, in giving people their voice or ensuring people have their own voice.” (NGO Researcher).

In the feedback sessions with CAB members, the impact of these power imbalances was noted, such as when participants perceive higher authority or status in the data collector or when gender dynamics influence responses. However, they highlighted how important it is for them to share ideas and knowledge with the researcher knowing that it will benefit the study. They believed that even with their humble knowledge, they can contribute to developing important things.

CAB members and NGO researchers talked about the fact that research participants and researchers come from different social norms and backgrounds. Hence, their perceptions of things might be different, and this should be taken into consideration equally.

Participants expressed several ways to mitigate these power dynamics. Researchers suggested that matching the data collector’s background or level with the participant’s status can help mitigate bias and ensure a better quality of data. One researcher stated that “... if it’s a group for men, then you would want the research team to be logically maybe a man, maybe for balance, you can just put a woman, but it would be good, you know, to have a male figure in a group discussion of men. If it is a group discussion for women, you think the women will respond more to a fellow woman... And then maybe if it’s a high-level data collection, where you have maybe high-level high risk reputable people in the community, then you would equally take a research assistant, who is also at that level, who may not be looked at as somebody who is not worthy to collect the data from that person.”

The presence of community members who act as “counselors” might improve the CAB members’ comfort and understanding of informed consent. Additionally, participants suggested that facilitating the informed consent process in a group format can be helpful when people start asking questions which can be supportive to others in the group who are shy to voice their thoughts out, however they acknowledged the possibility of people consenting due to wanting to please others when consenting in a group format.

Participant involvement.

Researchers stressed that addressing this issue involved putting participants at the center of the decision-making process and to make informed consent something that is ‘driven by the people’ (NGO Researcher). They suggested a cooperative informed consent approach in which potential research participants and researchers draft contextually relevant consent processes and documents together and ensure that they are adapted to the appropriate context, social norms and literacy. To ensure the clarity of materials, it was proposed “...to involve a third party, such as a layperson, as a reference point to check if the information sheets are understandable.” (Feedback Sessions, NGO Researcher). Involving researchers from the same community was noted as an effective way to address many of the challenges outlined, along with raising awareness and knowledge of the research and its potential societal benefit and shifting decision-making power to the people in the context. Ultimately, researchers proposed that when participants feel part of the research and see potential personal benefits, they are more likely to perceive the value of the project and consent to participate. In addition, the informed consent process should be mutually beneficial and prioritize transparently outlining contextually relevant benefits and risks, with ongoing feedback to ensure a balanced presentation of expectations and benefits. Researchers emphasized the importance of showing evidence and practical information about what will happen and making ongoing consent and the right to withdraw clearer for more voluntary consent.

Suggestions were made to include multiple stages of consent, involving both group information sessions, and individual conversations, with the optimal structure depending on the methodology and recruitment process. However, it was emphasized that in all cases the final decision to participate or decline should be made on an individual basis to ensure autonomy: “...So I am thinking the group information sharing can apply if the unit of research you’re thinking of to recruit is an organized group. So there you can give information generally in a group, but still when it comes to consenting, the assumption is everybody will still have the autonomy to decide on whether to participate or not to participate.”

Clarity in materials and accessibility.

In terms of more accessible formats, participants recommended exploring alternatives to paper-based consent, such as oral delivery, voice notes, visual aids, and a combination of pictures/videos and explanations, in order to enhance comprehension and engagement in the informed consent process. However, participant preferences varied widely, and they still stressed on the utility of also having pen and paper methods.

Researchers stressed on the fact that formats of informed consent should be tailored to suit the population, making it as meaningful and inclusive as possible. Similarly, multiple communication options for follow-up were seen as important to confirm the understanding of the informed consent. During the feedback sessions, researchers suggested participants to rephrase the researcher’s requests in their own words so that they can check to see if they understand what is being asked of them. This strategy aims to encourage participant autonomy and make sure they comprehend the terms of the research before giving their consent: “...But is to say, “what we’ve asked of you here, could you translate that into your own words? And would you then agree with that?”. So that the participants themselves are able to say, this is how I understand you, is that correct? And if this is indeed the case, I’m going say yes to that, or I’m going to say no to that.” According to the researchers, it is necessary to give more time and importance to training researchers on the consent-taking process, including role plays that stimulate real-life scenarios with research participants to practice and refine their approach.

Limitations.

The generalizability of the findings is limited due to using a single country setting of Lebanon and the cultural and contextual factors inherent in the country and research population. In addition, the measurement of participants comprehension and satisfaction with the informed consent processes mostly relied on self-reporting which potentially could introduce bias and inaccuracies. Moreover, the nature of this study may have influenced the participants’ understanding and perception of the consent processes. Participants may have been more inclined to respond favorably due to the inclusive methodology, thereby affecting the objectivity of the findings. Finally, the prototype’s effectiveness and feasibility in real-world contexts were not tested and this will be done in future studies.