Ulla-Karin Schön is a Professor of Social Work and one of the Lumena Conecto accompanying researchers.
Ulla-Karin is heavily involved in research on mental illness and disability, where participation is a key element. She believes that it is impossible to support someone in work or study if they are not involved in the process. She sees participation as a human right based on what is stated in legislation and the Convention on Human Rights.
- Can you tell us a little bit about yourself and why you chose to work with participant inclusion and user involvement?
I am a professor of social work and I do a lot of research on mental illness and disability. Participation has become a central part, both to investigate participation and how it can be increased, but also to create methods in research that can make people participate in the research itself. I am part of a large programme called User Involve, which is very much about how to strengthen participation in research.
- What made you choose this course?
I think I can see from my perspective, looking at living conditions and what is stated in legislation and the Convention on Human Rights. The individual's right to participate in society and in various organisations is absolutely central. I can also see that we have a lot to do in supporting people to be involved.
- What can participation lead to?
Being involved in the processes that are about supporting someone into work or study is impossible to find accurate solutions if the person is not involved. I think that we can never understand people's goals and driving forces and perceived obstacles unless the person themselves are supported to express them. If we become experts on other people's lives, we are at risk, or completely wrong, and it will be difficult to achieve long-term change.
I think we can never understand people's goals and motivations and perceived barriers unless they are supported to express them.
- You have mentioned that there are rights based on legislation, and you have mentioned social services, care and LSS, among others. Can you elaborate on what the legislation is about?
Both the Social Services Act and the Health Care Act are clear that interventions and planning should be based as far as possible on individuals' autonomy and wishes.
It should also mean that individuals should be involved as far as possible. The same applies to LSS, unless the LLS group is included, which means that, as far as possible, individuals should be able to participate and influence.
- You have also mentioned that participation is a human right, can you elaborate a bit on that?
I think that what the Convention on Human Rights addresses is a fundamental right for all citizens in society. In the Lumena project, for example, we need to think about what our processes look like so that we can guarantee that these goals are realised in practice.
- I think challenges for implementation, because the participants in Lumena have encountered barriers in the past and have not felt involved in any decisions and have never been heard. And then you have mentioned that there are barriers to implementation?
Absolutely, I think that if you take the example of having ambassadors in Lumena who will work on the basis of participation, they must understand what participation is, what is meant by it and that they must be involved in formulating what participation is or whether it is a goal expressed by the staff.
We must also meet at a level where it is meaningful for both. Is it the case that we work with participation to show good results for those we receive money from or because we think it is good for the individual and the incentive for participation. If it were a natural part of the work, there would be structures that clearly explain what your rights are in a way that you understand it even though I have cognitive difficulties. It's important to know how you can be involved in what decisions, how to proceed, how to speak for yourself. It is also important that you reason about it and also that it is prioritised, that it is important when making decisions, not that you as a staff member at the end of a meeting say ”how does this sound to you?”, and think it sounds nice and that the person has been involved.
To be involved, how to approach work, for example, must be that you understand what the options are, that you understand your right to say yes or no, how long the process is, that you understand the conditions.
It's supposed to be about partnership and I think we're still struggling a bit with that.
To be participatory, how to approach work, for example, must be that you understand what the options are, that you understand what your right to say yes or no is, how long the process is, that you understand the conditions.
- How can this work be improved in, for example, regular activities?
On the one hand, if you need to look at a care plan or a work plan, you need to know, for example, what meeting you have been called to, what will be discussed, who will be at the meeting and what you can influence yourself. You also need to know what options are available to say yes or no to. It is essential to know what will happen if I say no. If I then have to wait for another project, for example, my participation will be very conditional.
If you look at how people try to implement participation and participation models, three factors stand out. It is that there is low confidence in the person's ability. There may be a perception that they are frail and tired, that it helps little if we tell them about different options. The second factor is that there is also a belief that people do not want to be involved, but the vast majority do, as the research also shows.
The third may be that staff lack the tools to work with participation, there may be a lack of routines for natural participation and then it becomes pretty much a guess, it becomes a very false participation.
- Then it may be that you talk about participation in theory but you think you know what participants want to discuss but then do not know what it is about in practice?
Really, and if I fill in a survey, how will my results be used? If I am involved as a Lumena ambassador in various situations, what are the implications for the organisation? Just like you and I are now involved in, we want to know what my mandate is.
- Is it difficult to measure exactly what or value it?
That's certainly the case, but I think you have to get to grips with that kind of activity. It's important to think about outputs, what do we get out of our activities and what is a positive outcome.
You have to think about why you want user participation and what it should lead to. Then the next step is how we should think about the fact that we have quality indicators and how we create the conditions for our participants to be involved
- Do you have any tips on how to measure quality?
You have to think about why you want user participation and what it should lead to. Then the next step is how we should think about having quality indicators and how we create conditions for our participants to be involved.
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