A lived experience perspective on social connection in mental health research
When did you first suspect you had a mental health condition? Tell us about your mental health experience.
I knew that something was wrong with me a few weeks after I was imprisoned in a mental health facility, and after the medication started to work.
What support or treatment did you receive for your mental health? If you received a diagnosis, can you tell us about that experience?
I expected that the people at the mental health facility would explain what was wrong with me and would help me to become a better version of myself. But, unfortunately, they only told me that I had a psychosis and that I should avoid stress.
The sessions were mostly about basic life activities, such as ‘do you sleep well?’ and ‘are you taking care of yourself?’ However, that type of contact was not what I thought I needed. I expected more psychological treatment about how to become more self-confident, for example.
Later on, mental health services helped me to find work as a volunteer and take up my studies again.
Why did you decide to collaborate as a lived experience expert in research? Why is this important to you?
I decided to collaborate as a lived experience expert because I am curious about the experiences of other people like me, and how they manage their lives and what can be learned from that.
I get paid for this job, so I am also happy to have an income. And I do this job for my own self-worth and personal growth.
What can be done to improve representation of people with lived experience in research?
In my opinion, there should be money allocated within the research budget to support hiring people with lived experiences.
Also, researchers should identify the most interesting or relevant topics of research together with the patients. To do this, there should be better communications between researchers and patient associations.
What are the potential harms of participating in research as a lived experience expert? What can be done to mitigate these harms?
My experience is that people with lived experiences are quite isolated in the team and can feel lonely. Differences in perspectives between lived experience experts and researchers or managers sometimes make communication difficult. These communication differences might sometimes harm a person’s confidence.
Working in the same team together with one or more other persons with lived experience might help to reduce potential harms. Another related option would be meeting with persons with lived experience who are also working in research, but in another team. Alternatively, getting support from a patient association might also help to answer questions about participating in research. Having a conversation with the research supervisor might also be fruitful.
“Differences in perspectives between lived experience experts and researchers or managers sometimes make communication difficult”
What advice do you have for someone with lived experience who is considering collaborating with researchers as an expert?
Try to find a research project that matches your interest and, if possible, to which you can contribute through your qualities.
For example, I like to write, so further to my participation in research activities I interview the researchers and publish the interviews on the PsychoseNet website. Through these interviews, the researcher’s topic of interest and their personal life come across. This mixture of personal life and science is seen as interesting and is valued by patients, fellow researchers and people who stand next to the patients.
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