The requirements for collaboration in participatory research were broken down into chronological order: for developing a good working environment and for the actual collaboration. These requirements were based on the perspectives of both researchers and co-researchers.
Requirements for developing a good working environment
One of the lessons learned from the collaboration was the importance of developing a good working environment. Five requirements were found to contribute to a good working environment, which are outlined below.
Discussing reasons for engagement and wishes
Individual introductory meetings were held with service users who had shown an interest in joining the research team. Co-researchers then decided whether they really wanted to join. An introductory meeting was then organised in which all the members of each research team shared their reasons for becoming involved in the research (see previous section 1. Motivations) and shared personal information about their lives such as hobbies and interests. The research project and desired roles were also discussed. Discussing the reasons for involvement and sharing their wishes concerning the collaboration created a shared understanding of what each team member wanted to accomplish in performing the research together.
Formulating ground rules
Ground rules were decided on jointly in each research team and written on a flip-over. Agreements were made about privacy issues, team cooperation, and the possibility to stop taking part. This resulted in four agreements:
“We do not talk about the shared experiences of clients in the research team. If it has no added value, we do not mention the names of clients in the research team.”
“Listen to the client: stop the interview when a client is too tired.”
“If you notice anything, tell the group. Or otherwise share it with the person involved or (researcher’s name).”
“If you are sick or too busy with other things, sign out. You can also stop (or stop temporarily).”
We decided it would always be possible for a co-researcher to resign for personal reasons. Beforehand, the researchers expected that there was a chance that this would happen for these client groups, due to their long-term illness. In practice, the co-researchers were very often present, as they valued their participation highly. All team members tried to stay attentive about the first privacy agreement. Co-researchers also reported at the end of the research they found it really helpful “to be honest to each other, and give your opinion.” (Co-researcher 7, ID).
A training course of at least five sessions was given to each research team to prepare co-researchers for their active involvement in applying the qualitative instruments and evaluation. The specific content of the training sessions has been added as Appendix in Table 4. The training was prepared by the researcher (AS) and partly by one trainer who was hired for training interview techniques, based on the planned research activities, lessons of previous participatory studies, and wishes of co-researchers. The meeting length was adapted to the concentration span of the co-researchers, lasting between 90 and 120 min. Lay language was used as much as possible. Written information for the ID and OA teams was in a large font, in short sentences and simple language, and with more white space between the lines. If the co-researchers said they needed extra practice on some topics from the training, an extra meeting was planned. In all the teams, more time was taken to practice interviewing and using the qualitative instruments than scheduled. All team members completed the training. Afterwards, co-researchers said that the training had been really helpful in acquiring and developing the skills needed for interviewing. One co-researcher explained, “The training has helped me understand interviewing, and I also learned how to apply the knowledge. I sometimes tended to fill in a question for someone. I’ve learned not to do that, and not to draw premature conclusions by asking questions ending with ‘right?’ or ‘isn’t it?’” (Co-researcher 11, ID).
Availability researcher and travel support
Throughout the research project, one researcher (AS) could be reached by telephone, e-mail, and text messages. After a while, the researcher became familiar with the various needs of individual co-researchers as well. At the start, the researcher (AS) reminded all co-researchers of scheduled meetings shortly beforehand. After a while, some co-researchers still needed this extra reminder whereas others were perfectly able to remember meeting dates. If necessary, a researcher helped co-researchers organise travel to all gatherings and interviews. For example, some co-researchers asked whether their care professional could also be told about the meetings so that these care professionals could arrange transport by a tax or bus or could reschedule daily activities. For another co-researcher, the researcher pre-planned the route and sent the co-researcher a link to the online routing map to help the co-researcher to cycle from his house to the meeting location. This communication helped the co-researcher “get a picture of what to expect and make clear where I would be going.” (Co-researcher 4, MH).
A financial budget was available for paying co-researchers an allowance for their participation, but such an allowance was tied to national restrictions. As most co-researchers are either deemed unfit for the labour market or receiving a pension, they are receiving monthly payments from the Dutch government with a restricted maximum allowance for other activities. These co-researchers are only allowed to receive 1500 euros per year for their volunteering work, otherwise the reimbursement will be deducted from their benefit resulting in extra bureaucracy. In addition, travel expenses normally require a receipt for the tax reimbursement. In some cases, arrangements were made to reduce this administrative burden.
Requirements for collaboration
Besides creating a positive working environment, good collaboration between team members was felt to be essential. Six requirements were identified that influenced actual collaboration in the teams. Each requirement is explained below.
Development of a bond
Developing a close bond between team members - including the co-researchers and researchers involved - was very valuable for good collaboration. This required spending time together in training sessions and work meetings and constantly listening to each other. There was a gradual progression of opening up towards each other, showing our true selves, our ideas and starting to trust each other. Team members got to know the character, needs, and the strengths and pitfalls of every team member. This knowledge made fruitful collaboration possible as team members could better estimate what could be expected from each other and build enough trust to share ideas and give each other feedback.
Deciding on clear role division
Before the start of the study, the exact division of roles was left open. The role splits were discussed and agreed upon from the beginning and during the study by the teams. Co-researchers found it quite logical that all perspectives of respondents, care professionals and (co-)researchers needed to be taken into account. The preparations were done in partnership, with co-researchers and researchers both participating and deciding together. The co-researchers were in control when applying the qualitative instruments, while a researcher supported when necessary. Each co-researcher held at least 5 interviews. During the analysis co-researchers shared their experiences, gave advice and participated in the discussions at team meetings. The advices given by the co-researchers, experiences of respondents and experiences of care professionals were synthesised by researchers. Although each perspective placed its own emphasis on certain aspects, the findings of the various perspectives were mostly in accordance with each other and there were no major differences in judging the qualitative instruments on their usability. Thus, the researchers had a substantial role as they kept the overview of all evaluation material and made sure that all perspectives were taken into account. In the dissemination of the findings co-researchers were actively involved by sharing their experiences in several presentations, presenting the findings on the congress which was organised specifically on the research findings of this study, and in the production of videos for dissemination of the instruments in the toolbox.
The first author had the responsibility for the planning and communicating the training dates, work meetings and the interviews. She was also responsible for the research planning and the progress and quality of the research. Although all team members were accountable for proper collaboration, the researcher also checked whether everyone agreed about the way the research was done together, or whether friction had arisen. Co-researchers and researchers improved their skills by performing the research together and the tasks of each team member changed accordingly as the collaboration matured. For example, one co-researcher said, “At first I found it difficult to feel calm, and that made it difficult to keep my concentration during an interview. Now I can do this well, I reckon.” (Co-researcher 1, MH).
Transparency and feedback
A third facilitator for collaboration was clarity and openness of transparency about the preferred and possible degrees of participation on either side. Points of friction could only be recognised and discussed when both co-researchers and researchers talked about the difficulties. Feedback on what was noticed during the interviews and about each team member’s role, and discussing critical or delicate moments and reflecting on them together, were essential for good collaboration. The conversations took place directly after each interview and at the research teams’ work meetings to reflect on shared difficulties and achievements. Team members often provided useful solutions or suggestions to each other for handling specific situations. Open communication and joint reflection require self-knowledge and generated a learning and development process that improved our research skills. The following example shows more clearly how this openness was achieved. One co-researcher in the ID team had little share in one interview, and left the questioning mainly to the other interviewer who was assisting in the interview. The available researcher suggested after a while that the co-researcher could take the leaflet with the questions from his bag as a reminder of possible questions to ask. Afterwards, the co-researcher told the researcher he did not like the fact that the researcher gave this suggestion, as he consciously had chosen to do the interview without leaflet. Thanks to this openness, the researcher and co-researcher were able to agree that the researcher would not make such suggestions in future interviews anymore, and would stick to the observation role as agreed beforehand.
Need for structure
During the research, some co-researchers preferred more structure than was given in the beginning of the collaboration. Co-researchers needed a lot of flexibility for dealing with interview cancellations by respondents. The last-minute changes and the range of unexpected events were the main barrier to participation, stated the co-researchers in our research. The researcher involved in the planning (AS) learned that providing certainty, clear information and as many details as possible were very important. This issue was regularly discussed in work meetings. One co-researcher stated: “It did stress me a bit at times, though that’s partly down to me. I find it awkward if things aren’t clear when the interviews are being planned.” (Co-researcher 6, ID). The researcher also communicated to co-researchers that it was sometimes difficult to give information in time when communication with a respondent was slow, or when there was a high workload in a busy week. Another co-researcher wanted to receive more information about the interview setting and the background characteristics of a respondent prior to an interview. Other uncertainties that were mentioned were unexpected violent emotions of a respondent in an interview, the unknown number of respondents attending a group interview, unexpected twists in a group conversation, and the waiting time before a respondent was able to start the interview.
Equal positioning was an important factor for our collaboration, i.e. letting every team member have an influence and a say in the way the research was performed. At the beginning of our cooperation, the researchers learned a lot about this aspect from one event in the MH team that caused friction when writing the invitation letter for respondents. Two co-researchers were quite critical of how the draft had been formulated and gave a lot of comments, but they did not make changes to the text themselves. One week later, the invitation as modified by the researcher did not meet the expectations of the co-researchers. In retrospect, the co-researchers explained that they were angered by a remark the researcher had made (“I’ll make something out of it”) because they had worked it out in the meeting together. In the end, the team decided to plan an extra meeting to work on the invitation once more by sitting behind a laptop and writing the text together. This example was a good lesson for the researchers about creating new practices to counteract the traditional power imbalance and about the influence of the formulation and the use of an inclusive vocabulary. The skills of a researcher for equal positioning were summed up by the co-researchers of the OA team later on in the collaboration process: a researcher needs to be willing to cooperate, to be able to listen well, to let someone finish talking and not interrupt too soon, to accept opinions from others, and to be good at deliberation.
Time for collaboration was found to be an essential requirement of participatory research. Substantial time and effort is needed from all team members. For co-researchers, it was sometimes difficult to combine an interview with other planned activities: “When an interview is held in the evening, I’m tired afterwards. So I take that into account on beforehand, by planning fewer activities in the days before and after. I need time to process it.” (Co-researcher 8, ID). Specifically for the researcher who is in charge for the planning and coordination, substantial time was needed for planning the interviews with respondents, co-researchers and the extra supporting interviewer (as the activities and schedules of every individual needed to be taken into account). Communication with co-researchers and taking account of the individual situations of co-researchers also required substantial attention from the researcher coordinating the study.