141 Perspective matters in recovery Table 3: [continued] Family Family member: Our dad has been in-and-out of hospital and he may die soon. And the biggest impact is with my sister, I know she worries about him. She says she discusses it with her social worker. But I only get updated on the medication, and I don’t know what is best to do when it will happen, prescribe a higher dosage? Moderator: Do you discuss the situation of your father with your sister? Family member: Well, we keep sensitive information from her. We don’t know how she will deal with that. We do know that she may start crying over small stuff. So, when dad goes to hospital, then we usually say it’s not so bad, that he will be fine. Person with severe mental illness: So basically to spare her! But then the blow might come even harder, when it comes. Moderator: Are you afraid of her reaction? Family member: To get put through the mill again. If she’s not doing well, she keeps calling everyone, also at night. To the point we get drained. Everyone gets a roasting. Mixed focus group: exchange on expectations, not informing, not knowing who should do what I hope she will accept having an illness to some extent. Maybe her treatment team should teach her some illness insight. Because she thinks: there’s nothing wrong with me. Family member has got hopes and expectations on the other triad members Professionals Sometimes I also find it quite difficult to ask the network. I think, [they] already have quite a burden on their shoulders in terms of family care. Professional, voicing her expectation on family burden That father was so angry, I found him almost aggressive, also referring to his son, him not doing his best. Professional who experienced negative expectation of a father of a person with severe mental illness 2.2 (Not) Informing Persons with severe mental illness So, I still drink far too much [...] So when I talk to that psychiatrist once a year, I feel different than he is after all. And then I tend to pretend some things are a bit nicer. Person with severe mental illness presenting things nicer than they are I: What made you share it with your social worker? R: If I didn’t talk about it, it might trigger psychosis again, because the stress would rise too high. In my first psychosis [...] I couldn’t actually express it, you just get all caught up in the psychosis, and then you experience such strange things, it’s impossible to explain [...] When I fell in love I was like, I have to talk about it, otherwise it will go wrong. [expressing it] gave a little peace. You get some space again for other feelings. Choosing to inform professional of falling in love I: So your case manager at the time had contact with your parents? R: Yes, would that be a triad? The contact between my case manager and my parents was about agreeing, what was the best thing to do at difficult times. [...] I: And what do you think about that? R: Uhm, we had agreed on that. Respondent on knowing about professional and his network being in touch [continued on next page] 7
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