Chapter 1. What is participatory research?
In this chapter, we will give an introduction to participatory research, and clarify terms and definitions. We share the knowledge that we compiled from relevant literature in the field of participatory research. Information about the history of participatory research can be found elsewhere (1).
Participatory research is increasingly recognized within the field of health promotion as a way to create results that align with the needs and desires of the people whose life is at the center of the research topic (2-5). One of the central ideas of participatory research is optimizing the participation of these people to the best of their needs and capacity, whom we will refer to in these guidelines as ‘participants’. When participants are involved in participatory action research, we will refer to them in these guidelines as ‘co-researchers’. In participatory research, participants are not involved as research subjects, but as active participants. The extent to which participants are involved in participatory research depends on the research question of the academic researchers and could vary between participatory studies and study phases. However, prioritization of the research aim(s) and question(s) could also be based on the participants’ perspectives and input. When defining the research aim(s), and naming the research as participatory, some attention is required among academic researchers to use the right terminology.
Some added values of participatory research include co-creating knowledge, increasing ownership among participants related to the health problem and potential solutions, which in turn can promote social change within the community (3, 6, 7). Furthermore, due to their active involvement in participatory research, participants can become empowered, when the participatory process includes active involvement, capacity building, and creating impact within their community (8, 9). Table 1 presents a list of the pros and cons of participatory research (10).
Table 1. Pros and cons of participatory research
Pros of participatory research
Cons of participatory reseach
|Start with excitement and uncertainty
|Messy and chaos
|Empowerment for all long-term sustainable translation to real world
Balance needed (steep learning curve)
|Everybody involved has a learning process
|Slow process and anxiety
|Rich opportunities for new research methods
|Hard to establish hierarchy and traditional roles
|Good for children, adolescents, older adults (in terms of empowerment)
|There is an assumption of knowledge and expertise
|Great opportunities opening up
|Not clear if there is external validity – generalizability
|Quality improvement input
|Requires high skills to get it right
|Inappropriate paradigm for some issues
Adopted from the ISBNPA Annual Meeting proceedings, 2022, ‘Participatory research methods: Where is the science? (10)
There is no consensus on the definitions for participatory research, and there are different variations in types of participatory research, therefore, we included a basic list of definitions at the end of this chapter. Note that this list only includes one definition for each form of participatory research, including one reference.
Ladders of participation
The level of participation may range from one-way consultation (i.e. the academic researcher consulting the participants) to involvement in all stages of the research process and shared control and decision-making between academic researchers and participants. There are ladders of participation available that describe the level of participation of (parts of) a study (11). Figure 1 (top of the page) presents some examples of these ladders of participation: Arnstein’s ladder of participation (1969) (12), Hart’s ladder (2008) (13), and Pretty’s ladder (1995) (14). When zooming in at Hart’s ladder of participation, the levels that could be considered as participatory research are: 6) academic researcher initiated, shared decisions with participants; 7) participant initiated and directed; and 8) participant initiated, shared decisions with academic researchers (13). An important note is that a higher level of participation is not necessarily better and certainly not desired for every study. The typology of participation by White (1996)(Figure 2, top of the page) (15) offers another way of looking at the level of participation by giving insight in the different interests (i.e. of the academic researchers/implementers vs. the participants) and goal of participation. This typology distinguishes four major types of participation and the characteristics of each: 1) form of participation; 2) interests in participation from ‘top down’, from those who design and implement development programs; 3) interests from the ‘bottom up’, how the participants themselves see their participation, and what they expect to get out of it; and 4) characterization of the function of participation. These are just some examples, as there are many other participation models available and each model also has its own limitations. An overview of a total of 36 models was created in 2012 (16). One of the limitations is that these two-dimensional typologies do not include the participatory process and dynamics. In general, when deciding on the extent of the participants’ participation for your study, it is most important that the level of participation fits the needs of the participants, the aim(s) of the study, and the possibilities within the study for participation. Even when participatory research is not the main approach within the study, academic researchers can still choose to actively involve participants for certain parts in their study, e.g. by using participatory research methods. However, as academic researchers we do need to be transparent to the participants about their role and make conscious decisions about the level of participation within our studies.
Ethical principles of participatory research
When preparing for the participatory research, it is important to take ethical principles into account (17-19). Ethical principles are important in every research and there are several guideline available (20), however, in participatory research (where the distinction between academic researchers and participants is more vague) this needs extra attention. There are seven ethical principles (18), which need to be taken into consideration:
- Mutual respect, which means that the participatory team (i.e. the academic researchers and the participants) should agree on how to treat each other. The discussion about mutual agreements is preferably scheduled during their first meeting.
- Equality and inclusion, which means that the academic researchers aim to include participants with backgrounds and identities that represent the community under study, and actively focus on recruiting participants that are often overlooked (if this is relevant for this group). The representativeness may focus more at characteristics of the participants that fit with the research aim(s) rather than a statistically random group. The research team needs to consider how this can be achieved before the start of the recruitment phase.
- During all participatory meetings, the research team needs to strive for equal democratic contribution by all participants in all aspects of the research process. This can for example be achieved by acknowledging and discussing any (power) differences between academic researchers and participants, and by using language that everyone in the group is able to understand.
- Active learning means that everyone sees the research process as a mutual learning experience. This happens throughout the research process, by sharing experiences, reflection and evaluation.
- The academic researchers focus on making a difference by creating positive change for the community. This focus on positive change can be built into the research process, for example by including discussions on what can create impact according to the participatory team.
- Collective action, whereby participants, academic researchers and other relevant stakeholders work together to achieve positive change. This could be included by identifying common goals between all relevant stakeholders, and by creating a shared vision.
- Personal integrity, which means that everyone behaves in an honest, trustworthy and transparent way.
For a detailed guideline on how to put these ethical principles for participatory research into practice, we refer to the ICPHR position paper No.2 (18). To be able to incorporate all these ethical principles into the research process, adequate resources with regards to time and budget need to be included, when preparing for the participatory research to ensure democratic participation and collective action (21).
Definitions of different forms of participatory research and terminology
Within participatory research, different terminology and definitions are used across studies and these are used and interpreted in different ways. The most commonly used terms are briefly explained below. For each term, one reference is given, so please keep in mind that there are more references with terms and definitions than the ones we provide here. For those who are interested, please check the references for a more elaborate explanation.
Participatory Research is an empirical research approach, in which participation is the defining principle throughout the research process, and relevant stakeholders participate in the research as participants, such as academic researchers, clients, initiators, users, implementers, and those who may experience an advantage or disadvantage from the research (22). This is seen as a relational process through which knowledge is produced collectively with the people whose lives are at the center of the research (i.e. the interest group). It aims to bring about some form of change or action. The research process is a continual one of learning, reflection and action (2, 3).
Participatory Health Research (PHR) is participatory research specified to understanding and creating change for health and wellbeing of any population (2).
Participatory Action Research (PAR) is participatory research combined with critical action research and action learning. It focuses on action to improve a certain situation. It brings people together to learn from each other’s experiences and combine this knowledge into action (23, 24). It aims “to improve health and reduce health inequities through involving the people who, in turn, take actions to improve their own health” (25).
Youth Participatory Action Research (YPAR) is a form of participatory research in which children/adolescents are actively involved in research in collaboration with academic researchers/facilitators (23, 26). As co-researchers, children/adolescents conduct peer-research, and develop, implement and evaluate actions to improve their living situation. Children/adolescents are involved in and have influence on every step of the process through shared-decision making. The research can either be child-initiated or adult-initiated (27).
Community Based Participatory Research (CBPR) is a form of participatory research that actively involves community members and other relevant stakeholders (these can differ per topic, such as academic researchers, clients, initiators, users, implementers, and those who may experience an advantage or disadvantage from the research) in decisions throughout the research process (22, 28). It is a “collaborative research approach that is designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and wellbeing through taking action, including social change” (29).
Participation as method indicates that people are involved in research in specific ways in order to improve the quality of the research (2).
Participation as paradigm implies that participation is the leading principle throughout the research process (2).
Co-learning or collaborative learning includes gaining knowledge within the community through sharing knowledge. Co-learning uses a variety of educational approaches which all include joint effort from various stakeholders related to the topic at hand (30).
Co-design is a form of design where the people whose lives are at the center of the design are involved in the design process within the study. The people could be involved across all stages of the design process (31, 32).
Co-production is the involvement of the people whose lives are at the center of the research are involved in a later phase of the research process as (co-)implementers (33).
Co-creation is the involvement of the people whose lives are at the center of the research from an early stage as (co-)initiator and/or throughout the study as (co-)creator (33). The people are actively involved across all stages of the research process.
Co-researchers are representatives of a community who are a member of the participatory research group. They are actively involved as co-researchers in (a part of) the study. Together with the academic researchers they conduct the research (2).
This terminology list is not exhaustive, more terminology (e.g. knowledge-oriented participatory research: cooperative research, heuristic research) is available elsewhere (22).
For those who are interested to read more about participatory research, a list of useful literature is included at the end of these guidelines.
Examples of organizations in the field of participatory research
We provide some examples of organizations in the field of participatory research. We would like this to be a living document, so other examples can still be added to this list.
- International Collaboration for Participatory Health Research (ICPHR): http://www.icphr.org/
- Stichting Alexander Nederland: https://st-alexander.nl/
- Save the Children: https://resourcecentre.savethechildren.net/
- 7 Senses: https://seven-senses.nu/
- School for Participation: https://schoolforparticipation.com/