Successful participation starts with a good match between scientist and peer experts. Getting to know and understand each other requires effort and time, but it ensures a strong research or project, with a greater chance of appropriate and useful results.
For participation to be successful, existing prejudices must first be set aside. Sometimes, the input of peer experts is underestimated or viewed with a limited view. Peer experts on the other hand do not always know what they have to offer or what they can gain from participating in a project.
Experiential experts bring a different - and equally valuable - perspective, coming from their experience with a disorder. But they often speak a different language than scientists. The different stakeholders in a study therefore need to learn to understand each other. Transferring knowledge and experiences sometimes takes more explanation back and forth. It takes time to (learn to) listen to each other. But it is an extra effort that is certainly worthwhile. Equality withing a project is of great importance.
'What matters is that you're authentic. And that you are more than just your role. If you play the researcher - and I use the word 'play' on purpose - you won't be able to come into contact with young people with mental health problems. Because they'll know that the interaction isn't normal. They wonder why they should open up if I don't. So do it together and make sure that the exchange goes both ways.'
Frans Spierings, lector on growing up in the city, responsible for the projectKOPLOPERS
'When working with co-researchers with a disability, I think it's very important that you give them space, particularly in the beginning of the process, so that you will learn to see their qualities and talents. You'll start to see that an experiential expert is not only someone with a disability, but someone with possibilities and research talent.
Henriëtte Sandvoort, co-researcher 'Working Together, Learning Together'
For both scientists and experiential experts, it is important that everyone is clear about their motivation and motives. It makes a difference whether a scientist is convinced of the importance of participation or whether he or she does something with it 'because they have to'.
For peer experts it's also important to clearly have in mind why they want to participate. Is it because they feel they 'have to', because it is their duty? Or is participation seen as an opportunity to contribute to relevant results and broadening the view of researchers?
'Some researchers focus on patient participation because they'll get research funds if they do something with participation. As a researcher, ask yourself whether you should want that. You do raise expectations in patients; they think they can have a say. But if they are not taken seriously, it turns into a frustrating experience. That causes a lot of damage, to everyone involved.'
(source: Een 10 voor patiëntenparticipatie, only available in Dutch)
As the participation ladder shows, the degree of involvement in research can differ depending on the situation or the phase of the project. An intensive form of cooperation in research takes a lot of time and effort for experiential experts. Not everyoneis physically and mentally able to do that. Depending on the kind of input, certain competences are required as well. Therefore, if the peer expert doesn't already possess these competences, there should be room for training in order to obtain them.
Therefore, it's important for experiential experts and scientists to talk to each other about what's desirable and achievable. This requires curious scientists and realistic peer experts. And above all: dialogue and honest communication.
'Because of my condition, I need to be able to lie down regularly. Also, after a while I get so tired that I can't think coherently any more. People often don't realise this. Or only at the beginning - and then after a while things start to go back to the way they used to be.'
(source: Een tien voor patiëntenparticipatie, only available in Dutch)
'We had a congress in Scotland one day. I had to tell my colleagues that I can't stay at a conference all day without a break, because otherwise I won't make it to the evening. I like going out for dinner, but I need energy for that. (...) These are the kind of obstacles that you run into. You have to talk to each other about it. That was difficult for a while, because you don't want to disappoint someone else. But it's necessary in order to be able to work together.'
Henriëtte Sandvoort, co-researcher 'Working together Learning together'
'Henriëtte (co-researcher with a visual impairment) does not like to be rushed. When we are on the train station and the train is about to leave, she does not speed up. I later found out that that is frightening for her. While I think: 'If we just speed up a bit, we'll catch the train and we'll be home in time'. So we really had to look for a common rhythm.'
Sofie Sergeant, researcher Disability Studies in the Netherlands, project leader 'Working together, Learning together'
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