1. Understanding participatory research
Participatory research is not a specific scientific method, but rather an attitude and style of research:
«The fundamental intention of participatory research is to establish a communicative space, a public sphere in which work and everyday practices can be explored with all participants and parties concerned. With the view towards participation, the willingness to recognize and adopt the perspective of others is brought to the table, so that the general aim of knowledge is a collaboratively developed analysis of facts, actions, and problems.» (Bergold & Thomas, 2020, p. 9)
The conventional divide between the perceiving and evaluating researcher and the (in social research: human) research subject is being abandoned in favor of a shared process of discovery that takes seriously the knowledge of the actors responsible for their own lives and the insights and skills associated with them. Particularly in areas of theory and practice in curative education, people living with disabilities have been objects for far too long: as recipients of (well-intentioned) care as well as research subjects, and in the worst cases, as victims of medical experiments during the Nazi era (Aly, 2014).
2. Characteristics of participatory research
Participatory research is a set of methodological procedures that actively involve the people being researched within the research process itself as experts in their own field. This style of research not only broadens the horizons of the researchers, but is also committed to improving the living conditions of the people with whom the research is conducted:
«Participatory research is an umbrella term for research approaches that explore and influence social reality in a spirit of partnership. The aim is to understand and change social reality.» (von Unger, 2014, p. 1)
Participatory research thus pursues goals that go beyond the mere acquisition of knowledge. It should therefore not be understood as an approach to basic research, but rather aims to improve social reality at various levels:
- On the ‹knowledge-based› (epistemological) level, criticism of the current positivist model of science is expressed.
- From a ‹lifeworld› perspective, emphasis is placed on the self-structuring nature of everyday life and practice.
- Against the backdrop of a ‹humanistic› view of humanity, reference is made to individual
growth and potential for self-realization. - On a ‹political› level, the focus is on the question of fair living conditions, social participation, and democratic influence (Bergold & Thomas, 2020, p. 7)
Participatory research is rooted in the tradition of action research, a form of research developed by Kurt Lewin in the 1940s to 1960s that points to the inseparable entanglement of theoretical concepts and their practical forms of realization – in other words, theory always refers to practice and vice versa. Researchers and experts work together to agree on the appropriateness of theoretical questions (underlying the investigations), reflect on possibilities and forms of interventionist practical activity, and discuss how to implement (social) educational measures (Heinze, 1987, p. 31). The aim is then not only to examine practice in practice, but also to use the findings gained in the research process itself to directly improve conditions.
The elements of participatory research can be described as follows:
- Participatory collaboration
- Inclusion of experiential knowledge
- Action orientation
- Empowerment (Wiegering, 2015, p. 22)
Ideally, researchers and experts work together on their own behalf from the outset. This means that even the selection of the subject of research is already done collaboratively and that the perspective of the people affected is not only taken into account, but also directly guides the
action. The experiential knowledge of the people affected not only becomes the subject of research but is also part of a reciprocal process: on the one hand, it determines the selection of the subject matter, and on the other hand, the findings gained lead back to an orientation toward action, thus gaining practical relevance.
Another fundamental principle is empowerment, a concept that originated in the American civil rights movement. Empowerment essentially means enabling self-determination and autonomy. Beate Blank describes empowerment as a fundamental condition for human life:
«From the first to the last breath, the questions of force, power, and authority to cope with life and assert one’s own interests in dealing with our fellow human beings, fellow creatures, the environment, and nature are central.» (Blank, 2024, p. 20)
Those affected are encouraged to stand up for their own interests and take action. With this, the principle of empowerment also becomes important for the research process: to a certain extent, the researchers relinquish both their own interpretive authority and control over the process, a circumstance that has certainly drawn criticism of participatory research in terms of the neutrality of the researchers and the fundamental openness of the results.
It should be noted that participatory research pursues two fundamental goals. The first is the acquisition of scientific knowledge, which drives all research. Scientists want to obtain new results from every research project – for example, by describing and understanding social problems. In participatory research, however, scientists don’t just want to understand the problems – they also want to change them. Change is the second goal of participatory research,
and this distinguishes participatory research from other research styles. The research results should strengthen the long-term social participation of groups of people who would otherwise experience disadvantage, social exclusion, or discrimination (Lutz et al., 2020, p. 9).
Ideally, by overcoming social problems, those affected should also be empowered to know their own resources and then use these resources to (further) lead a self-determined life.
Participatory research therefore aims to understand social problems and contribute to changing social conditions. Its demand for change distinguishes it from other styles of research. Regardless of the research style, however, certain ethical principles apply in social research, which researchers and co-researchers must adhere to (ibid.).
The changing relationship between (social) science and everyday life is leading to scientific research becoming more practice-oriented; the resulting theories are therefore characterized by a much greater practical relevance and thus effectiveness than if experts had not been involved in their own field.
Participatory research is community-based, which means that the results influence the social system (Luhmann 1995). Social systems consist of communication, they are autopoietic (i.e., self-generating), and are closed to the outside world insofar as they generate processes of change only from within themselves. Against this background, it seems almost necessary to take a participatory approach to research tasks that aim to change social processes.
3. Ethical standards of participatory research
Participatory research is subject to the same ethical standards that generally apply to social research. However, other, additional challenges may arise when co-researchers are involved – especially if they belong to special vulnerable groups (Lutz et al., 2020, p. 10).
Vulnerable groups of people are not clearly defined. Vulnerability can be established through individual characteristics. This applies to children, for example. Their individual characteristic is that they have difficulty assessing complex situations. However, we should critically examine
the general classification of people with disabilities as belonging to this category of structural weakness. Here, it is more likely that increased vulnerability is due to external conditions. Members of minorities are generally considered vulnerable if they are structurally disadvantaged or inadequately protected, which is often the case for people with disabilities. In general, we need to take a critical stance towards the concept of vulnerability. If our primary focus is on people’s vulnerability, we eventually tend to only perceive their supposed ‹weaknesses.›
In social research, ethical principles ensure two things: on the one hand, they protect the people who participate in the research, and on the other hand, they guarantee that the scientists work in a scientifically correct manner. Four especially important principles of research ethics are as follows:
- Scientific integrity and objectivity
- Principle of non-maleficence
- Confidentiality and anonymity
- Voluntary participation and informed consent
(von Unger & Narimani, 2012, p. 7)
These principles give rise to specific ethical principles that are binding for all parties involved: respect, self-determination, accessibility, openness, competence development, informed consent, freedom from harm, usefulness and change, accountability, self-reflexivity, and finally validity. (Hausner, 2020, p. 61ff.)
4. Forms of participatory research
As a rule, research methods in participatory settings should be designed qualitatively. Possible research methods include participant observation, SIM focus groups (Structured Interview Matrix), future workshops, photo-voice, various forms of structured and semi-structured interviews, and narrative interviews. It should be noted here that, from a research ethics perspective, participatory evaluation of interviews should always be offered. Another method that enables the inclusion of non-verbal people in the research process is evaluative site visits, which has been used for years in impact and effectiveness evaluation. With the help of an observation sheet, people with disabilities are accompanied as they show their collaborators their living situation, their work, and their social space and present and evaluate them – verbally or nonverbally. This walk-through is recorded and evaluated, and a comparative evaluation is possible thanks to the standardized observation sheets.
Recently, the use of the research method known as perceptual vignettes has become increasingly important. Perceptual vignettes can be classified as phenomenological and are characterized as a research approach by the fact that the observed person can initiate the research process through their actions. Unlike in observing participation, the research goal is not determined in advance; instead, the occasion arises when the observer notices what is happening. This approach has been tested in many scientific theses in recent years and is considered very promising.
5. Participatory research: an example
5.1. Situation and course
A project that has been carried out since 2020 in Die Robben, the living and working community in Wulfsdorf near Ahrensburg, north of Hamburg, serves as an example of a participatory research process. LebensOrt Wulfsdorf [Wulfsdorf living center] is not an institution for the disabled but was founded by a group of like-minded people who were looking for a solidarity-based, ecological, and equitable model of living and housing. A large number of the founders were employees of the Wulfsdorf biodynamic farm. Two ecologically oriented settlements were created. Since 2014, a parents’ initiative of graduates of the Friedrich Robbe Institute [a special needs Rudolf Steiner school] in Hamburg has been involved in the existing project and has built 32 accessibility-compliant apartments that are also suitable for people with complex disabilities.
To ensure care and personal assistance, a care service was established that can provide all forms of care and assistance according to individual needs, including care for people who require ventilation.
Since November 2020 (with interruptions due to corona-virus regulations imposed by the health authorities), work has been underway with three non-verbal people with complex disabilities to create a communication system using elements of music. The aim is to enable these individuals to initiate communication with their environment, thereby helping to expand their opportunities for self-determined participation in social and artistic processes. The project developed from an idea by the educational director, Anke Brammen. It was planned and implemented by the musician and music therapist Aino Löwenmark and scientifically accompanied and evaluated by Prof. Dr. Christiane Drechsler from the Institute for Waldorf Education, Inclusion and Intercultural Studies (IWII) at the Alanus University in Mannheim. The sessions usually took place weekly and were divided into ten minutes of individual therapy and 20 minutes of group therapy. The method of function-oriented music therapy (FMT), which was used at the beginning, was adapted to the needs of the participants as the project progressed:
«Last year, I distanced myself somewhat from my FMT method. The FMT method is only intended as individual therapy and not as group therapy. That’s why I actually started something new right from the beginning. I did retain the basic approach of FMT, because nonverbal, non-instructional communication is still very important to me. And I try to understand myself as a relatively neutral counterpart.» (Löwenmark, 2023, unpublished manuscript)
The research methods used also underwent changes during the course of the project. Initially, the plan was to accompany the process with methods from observing participation in the educational field and to create a further (reflection) level at six-month intervals with topic-centered interviews. However, both methods proved to be, if not unsuitable, at least insufficient. Fortunately, a new research tool was being developed at the institute at the time: the creation, analysis, and interpretation of perceptual vignettes (Barth & Wiehl, 2024). These were used for the first time in the context of music therapy procedures.
As can be seen from the interim report and the first publication, all three participants made great progress during the course of therapy in finding ways to express their feelings. This progress has been consolidated over the past few years. The music therapist’s observations and the short sequences in the perceptual vignettes show a high degree of consistency:
«Singing is a great way to connect with Marie. I notice that my voice reaches her immediately and that she enjoys it. For example, on November 17, 2023, she sang about hazelnuts in her own unique way. I found it exciting and funny and sang along with her. She really liked that, so we sang together in her remarkable melodies. I just sing along with her. I accompany her singing on the piano and sing along myself.» (Löwenmark, 2023, unpublished manuscript)
«Vincent also likes to sing monotonously and on one vowel. However, I don’t find any direct communication through singing here. With him, it is usually his dancing hands that are in the foreground as a means of contact and an instrument. Vincent wears cloth gloves because he bites his hands. Teeth grinding used to be an issue, but that is long gone. I wonder if the hand biting is the same. He does sometimes stop doing that. I sometimes react with dissonant tones when he bites himself. Then he stops immediately, which of course shows that awareness is taking place through the music.» (Löwenmark, 2023, unpublished manuscript)
«Breath is the most important instrument and means of communication for Schorschi [George]. His body is controlled by his breath and sometimes by his tense and relaxed reactions. His facial expressions are also a great means of communication, and recently I have noticed that he is struggling with an inflamed eye. I often have the feeling that when he arrives, he is a little agitated. But in the music therapy situation, he often finds himself again and is usually very relaxed after the therapy. During the therapy, there are wave-like bodily reactions, to which I respond musically.» (Löwenmark, 2023, unpublished manuscript)
One element that was already established in the second part of the sessions and proved to be increasingly important over the course of the program appears to be especially valuable, new, and intensive in the past year: the interaction between the three people involved and the sensitive way in which they made contact with each other. While the individual therapy session was always designed for the dyad of therapist–self-advocate, the contact person in the four-person group setting could be freely chosen by the self-advocate who was playing music. What is special about this situation is the possibility of free choice. People with complex disabilities decide with whom and in what way they make contact, and each of the participants showed a direct reaction during the course of the last meetings:
«Schorschi rarely sleeps. He fights to be present. He breathes and reacts strongly. He is also the link between the other two. He lies in the middle on the table, with Vincent on his left and Marie on his right, each in their respective wheelchairs. Marie is so close that she can touch Schorschi. I always try to make this possible, even if she sometimes drums a little too hard on Schorschi’s feet. Vincent strokes Schorschi’s head.» (Löwenmark 2023, unpublished manuscript)
5.2. Elements of participation
Last year, the importance of consolidating and transferring the successes achieved into the everyday lives of the self-advocates was repeatedly discussed in the reflection meetings, in particular between the therapist and the scientific support team (documentation is available), but also in several discussions with the educational directors. Ideas and concepts were put forward that can be divided into two areas:
- More musical offerings in the everyday lives of the participants, for example through singing and rhythmic music-making in day care centers, and
- Music in individual care, for example by caregivers. Concepts are in preparation for both areas.
Moreover, another result of the assessment is currently coming to the fore, which is truly surprising (and should therefore also be included and evaluated in a larger publication): communication between the individuals involved is clearly stimulated and promoted by the means and methods of musical communication. The documentation from the last two years proves that the initial side-by-side music-making of the individuals concerned has increasingly become a collaborative effort, which has found and continues to find expression in physical contact, namely through touching the other participants with the instrument or the hand, or through visible and audible reactions to the activities of the other participants. From a research
perspective, it is highly interesting to further pursue this line of inquiry. At this point, it can already be noted that three people with complex disabilities who do not communicate verbally were able to influence the research process to the extent that it led to a significant change in the objectives. Participation at the beginning of the project was evident in that the behavior of the people with complex disabilities who participated was interpreted as expressing a need to be understood, combined with a high level of reactivity to musical impressions. Both the music
therapist and the researcher (also a musician) took this as an opportunity to develop a setting in which development seemed possible.
During the course of the process and its evaluation, it became clear that the participants were increasingly influencing the way the music sessions should be shaped. Communication among themselves took on greater importance than communication with the music therapist. Over time, the focus of the research changed: it was no longer centered on developing communicative structures with people without disabilities, but rather on developing communication between non-verbal people with disabilities. A completely new field of research opened up.
6. Concluding remarks
This article has presented participatory research both as a form of practice-based research and as an ethically grounded approach that is particularly relevant in (curative) educational contexts. Participatory research shifts established power and knowledge structures by no longer viewing people primarily as research subjects but rather taking them seriously as experts in their own right. Thereby, it goes beyond a purely knowledge-oriented approach to
research and consistently combines scientific knowledge acquisition with the aim of social change, empowerment, and the promotion of participation .
Translation from German: Joshua Kelberman
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