How to conduct participatory research in practice?

In this chapter we will give some insights in how to conduct participatory research in collaboration with participants throughout the research process. We share insights from our own experiences with participatory research and refer to useful literature. We invite other academic researchers to contribute to this chapter by sharing their own experiences with participatory research.

Note: always keep in mind the ethical principles (See Chapter 1) when conducting participatory research in practice.

Participation from start to finish
If possible in your research, participatory research can be especially valuable when participants are involved throughout all the research steps, from designing the research questions and theoretical framework, to developing and implementing actions, analyzing, and evaluations and interpretations. It is important to discuss with the team, and when possible with the participants, what role everybody has. When participants are involved as co-researchers in participatory action research, participation is maximized because then the boundary between academic researcher and participants fades (25, 37). Mutual learning occurs as participants develop research skills and learn more about the research topic, while academic researchers learn more about the lived experiences of the participants and develop their research skills (27).

Preparing a protocol
When the team (this includes both participants and academic researchers) has decided on the research aim(s), the method(s) suitable for answering the research questions, and the timeline of the study, we advise to develop a practical protocol, one that can be adapted throughout the study by the participants and academic researchers. We advise the topics below to at least be present in the protocol:

• General information about the participatory study
• The timeline of the study
• The approach used for this study (i.e. level of participation, theories, frameworks), recruitment of participants
• A broad outline of the content of the meetings with the community members,
• Other relevant documentation that is useful for the research team (e.g. evaluation forms, a list of energizers/games).

Besides this practical protocol, as for any other research, a general research protocol needs to be created and submitted to the ethics committee for approval before the start of the study (38).

Stakeholder analysis
Before the start of a participatory research project, it is advised to conduct a stakeholder analysis (26). Mapping the relevant stakeholders and involving them from the start of the study will promote participation of these stakeholders during the study. Furthermore, collaborating with the most important stakeholders can promote continued participation of community members with for example policy makers and community partners, after the research project is finished (39). When conducting participatory research, active involvement/engagement of each stakeholder is essential to sustainably implement actions to promote health, as the actions are more easily integrated in the existing local structure of policy and practice (6). This stakeholder analysis includes creating an overview of the relevant stakeholders who are connected to the health problem or the potential underlying determinants of this problem. A first list of stakeholders can be made by the academic researchers through consultation of literature or policy documents. But it is usually more valuable to visit the community and talk to community members and organizations to create a complete list of relevant stakeholders. The list of relevant stakeholders can be completed during the participatory process, as the participants can also add relevant stakeholders.

Location
A suitable location for the participatory meetings has to be found. The location needs to be accessible for all participants, to feel safe for participants, be adequately spacious for the planned activities, be (mostly) free from distractions and include the necessary resources such as chairs, tables and a white board. A suitable location could be a room in a school, community center, church or library, also depending on the preference of the participants. For example, if child-participants are all from the same school, academic researchers could decide (together with the school) to organize the meetings there. If they do, it is advisable to organize the meetings in a different room than the classroom or change the set-up of the classroom, to reduce a teacher-student association. If academic researchers recruit participants from multiple schools, a community center could be more suitable for the meetings to make all participants feel equally familiar with the place. In addition, it can be beneficial to have multiple rooms available at one location, if smaller group exercises are needed without distractions from the rest of the group (40).

Facilitators
Depending on the characteristics of the participant group, a facilitator can be chosen that is a match to the group, with respect to gender, ethnicity, age etc. For example, when the facilitators/academic researchers working with students resemble the teachers at the school, this can result in a participatory setting that feels like the regular class setting (e.g. white facilitators working with students from an ethnic minority background who usually have white teachers) (40). When working with specific groups, it is not always possible to have a facilitator that matches the participant group. However, especially when the topic of the study relates to the differences between participants and facilitators (e.g. discussions about health with people with overweight led by a skinny facilitator), academic researchers need to take into account the effect of the characteristics of the facilitator on the research process and be open about this to the group. Facilitators can talk to the participants about it, share insecurities and ask participants how they feel about the characteristics in the group. These can be difficult conversations, but it has the potential to positively influence the participatory process.

We advise to have two facilitators present and to create participatory groups of 6-8 participants. This is a number of participants that is good to manage and creates an environment where everyone can be heard, while still having the possibility for valuable discussions. Smaller and larger groups are possible, but academic researchers have to be careful to still gather representable data and be able to uphold to the ethical principles. With two facilitators present, one can take the lead in facilitating the meeting, the other can help in keeping time, getting materials ready and keep records. Also, it is preferable to have the possibility to let the groups work in subgroups, and having two facilitators present can help in facilitating these subgroups. This is especially relevant when working with larger groups of participants or when participants who need more assistance such as children, as they may need some more guidance with the activities during the participatory meetings. A facilitation course could be helpful for academic researchers to get more acquainted with different ways of facilitating such groups and to learn to use suitable methods that they can use during the meetings.

Methods
One of the keys to successful meetings are energizers. These can be used at any point during the meeting when it seems that it can benefit the meeting. Energizers can be used in the beginning of the meeting to wake people up, get them engaged and get out of their work/school/home mindset. In the middle part of the meeting, energizers can be used when you notice that people lose their focus to regain energy and focus to work through the second half of the meeting. But energizers can also be used to prepare participants for a next activity, for example to stimulate their creativity or get used to a specific theme or method. Lastly, energizers can be used at the end of a meeting to end the meeting in a fun way and leave energized.

When academic researchers want to do activities with the participants, it is advised to use multiple creative methods (41, 42). Keep in mind that the method suits the aim, number of participants and characteristics of participants. In general, for all age groups creative methods work well where they can work with their hands, go out in the community or share their thoughts and experiences in various forms of communication (photographs, videos, drawings, sticky notes, etc.). Ideally, academic researchers involve the participants in the design of the meetings. This will lead to more valuable meetings, learning and research, because of the co-ownership that participants experience (37).

Capacity building for the participants is another essential part of participatory research (41). Capacity building helps to create an equal research process between participants and academic researchers. Certain skills can develop naturally throughout the process, such as leadership skills and communication skills. But developing these skills can also be triggered, for example by giving responsibilities and including collaborations and presentations by participants. With participants as co-researchers, it is needed that they develop research skills: learn about research ethics such as consent, anonymity, respect for the respondents etc.; depending on the research, other valuable skills are for example photography, developing and selecting questionnaires or interview questions, interview skills and analyses. This can be done through short presentations or workshops, and learning-by-doing with feedback within the group.

There are various methods that can be used in participatory research. Examples include community mapping, concept mapping, focus group discussions, arts-based methods, stakeholder dialogues, role play etc. (43-45). At this website multiple participatory methods can be.

Set-up of first meetings
In general it is important to structure the meetings with a check-in, a body and a check-out. You could start with a ‘how is everybody feeling today’, an icebreaker, a game, and/or sharing stories about what you did last weekend. The middle of the meeting should be dedicated to the study. At the end of the meeting you could reflect on the meeting, do a game and/or discuss the next meeting.

In the first meetings, extra attention and time should be dedicated to creating a safe environment, by getting to know each other, and setting some basic agreements for the meetings. Depending on the participants academic researchers collaborate with, some participants may already know each other. But as the group as a whole is new to each other, it is still good to begin with games or activities to get to know each other. When the group does not know each other, academic researchers can start with introduction-games. If the group is familiar with each other, you can expand with sharing hobbies or personal characteristics. In these games academic researchers already set the scene for the meetings and the vibe they want to create, so be careful in picking suitable activities. As mentioned, also setting the basic agreements for the meetings should happen in the first meetings. When working with school children, academic researchers could use some of the school rules (raise your hand when you want to speak), but should also be careful not to re-create the school-setting too much. Other valuable agreements are related to safety and privacy: what someone says in the meeting will not be shared outside of the meeting. When setting agreements, we advise to create them together with the group. Rules work better when they come from the group and it also helps in creating shared responsibilities. It is helpful to write the rules down to be able to refer to them when necessary.

In the first meeting it is also advised to discuss with the group if the chosen day, time and frequency of the planned meetings is fine by them or if it should be changed. With the research schedule in mind, academic researchers may want to have hourly meetings every week, but it could be that participants prefer to have 1.5h meetings every two weeks. If that is what they prefer, that probably works better and keeps them motivated. The researcher has to show flexibility.

In the first meeting an introduction of the research and aim of the meetings should be given. In the following meetings there is more focus on the content of the study, but getting to know each other and building a trustworthy relationships remains important. Researchers can initiate more detailed discussions about the study to make sure the participants fully understand what it is about and together formulate an aim for the study that all participants feel comfortable with. It is important that participants relate to the research and the issue it focuses on. Furthermore, each person’s preferred role and expectations should be discusses (this includes those of the participants and academic researchers). This process may take some time but is crucial to make sure everybody is on the same page and that a fruitful partnership is started.

Relationship building
Building a strong relationship with the participants is something that starts in the first few meetings, but is a continuous process. This could even extend outside the meetings, as it helps when the academic researcher is for example visible in the community and participates in community activities when it concerns a community- study, or for the academic researcher to be present in the hospital and gets to know the people and processes there when the study is located in a hospital. In this way, relationship building can also take place with the rest of the community, which can strengthen the study and support for actions to be developed. For the development and implementation of actions, collaborations with professional stakeholders is key for successful and sustainable implementation (46). Time should be reserved to build, protect and strengthen these connections. In building relationships with professional stakeholders, it is important to discuss roles, responsibilities and ownership (47, 48). The mode of working with stakeholders depends on the study, but can for example be through regular meetings with key stakeholders, newsletters, meetings connecting stakeholders and participants, and/or by the academic researchers participating in the community. Important to acknowledge is that relationship building is about the relationship between professional stakeholders and the participatory team, which involves participants and academic researchers.

Action
Specifically in participatory action research, academic researchers and co-researchers strive to solve problems in the local setting. This can be achieved in different forms, depending on the approach taken and aims set. When the research aims to develop an action or intervention, it may help to structure this process by for example adding an intervention development framework such as intervention mapping or the MRC framework (49, 50). This helps to structure the participatory process. However, some argue that structuring participatory processes goes against the nature of participatory research as it is actually characterized by messiness. It can be a challenge to find a balance between creating a certain structure to be able to reach your aims and having a flexible/messy process wherein the collaboration with the participants defines the process. Ozer et al. (2017) (42) describe four phases in youth-led participatory action research, that make a general outline for the research process: 1) issue selection, 2) research design and methods, 3) data analysis and interpretation, 4) reporting back and taking action for change. See article for the practical application of these four phases.

Reflections
Key to the participatory process is to include continuous reflection. This will be discussed in detail in the Chapter 4. We do want to highlight the necessity of record-keeping during the participatory process and that facilitators need to reflect on their role and the ethical dilemmas they face (7, 51). Some or our colleagues have used reflection forms that have been filled in after every meeting (see Appendix). This helped to reflect in a structural manner on key elements of the meeting, both on an individual level on the role of the facilitator as well as on the group process. In addition, we advise academic researchers to organize reflection meetings between facilitators and ask participants to reflect on the meetings and the role and qualities of the facilitators (41). This includes the reflections of the participatory process as just described, and the data that they collect. Reflections help to learn from the process and to make adaptations when for example certain ethical principles are not met.