Skip to main content
. 2024 Nov 6;24:777. doi: 10.1186/s12888-024-06213-0

Table 6.

Service user interview excerpts

Theme Subthemes and excerpts
Process Staff involvement
“Ohh, I think [the care team's input] was fine. I think my care coordinator is, I've been there for a couple of years now, so she kind of has an understanding of what I've been going through, so it was, it was fine. With the doctors it's different because that, in the service, like I don't get the same doctor every time. It changes continuously so that doctor doesn't, we don't really get to build a rapport with them”
“It was also good to have [member of care team/psychologist] for the first session in so far as she was able to, umm, refine some things or remind of some things and sort of guide the session a little bit or provide context in ways that I actually needed at different times”
Facilitator involvement
“[The facilitator] was so patient. She was understanding she she made sure there was clarity with what I was trying to express and she really took her time. Which is, which is really, she tried to put herself in in my, she was empathetic, let me say that. There was empathy there, which I really, really appreciated.”
“I think just sort of like support around the whole thing, it's just like, OK, I am taking all these down and you know and you're you're always free to amend or change and add to it as you see needed. Maybe just having that said a few more times during like the the sessions would be would be a good thing for people like me, that's all.”
Demands
“It was at times emotional remembering some of the things that I've experienced. But I did feel like I was supported and cared for in the process.”
“The actual process was quick, but getting the feedback took a little while. I did it in April and I didn't receive the feedback until July, so I don't know whether that that means there's been improvement there or if it's just something that normally happens. But it's just, it felt like a long time to get the feedback back after doing the initial appointment.”
Quality of ACD
“[My ACD] seems like a very well done, well presented document that I'd be happy for mental health teams to see in the future. Um, this seems like a very just well put document something that I'd be happy for anyone to see really.”
“The facilitator said she said she's gonna send me a final copy… they sent me a PDF copy of it with, just for me to check if there's any alterations required, I replied to her with…what needs to be changed and then, i think she said she'll get back to me. So that needs to be checked up a bit more, there's a few issues that I had to correct on it. They said they received the corrections. I think they said they'll let me know when it's been corrected. So that needs to be followed up as well.”
Benefits Drive to complete
“As a minority woman I felt it was really important to have my voice heard because two of the most, two of the most distressing factors of being in an institution was one, immediately I was deemed aggressive and I wasn't, particularly aggressive. My, obviously everything was very heightened, but I remember, they sort of took me and and didn't explain to me what the medication was. I've not been raised on western medication. So instead of that I experienced restraint…and I just felt, I felt it's, I mean there's been a lot of research into how Black people are categorised in mental health. How we're given certain diagnosis, that apparently are almost like trends at that time, like for example, schizophrenia, lots of Black males were told they had schizophrenia over a period of time in the 80 s and 90 s. And I think if you're a woman of colour and you are advocating for your rights, they, I just felt they just wanted me to be silent and doped up.”
“I wanted to complete an advance statement due to the treatment that I received the second time that I was sectioned. I wanted to be, for people to be clear, including like my family and the people who are, i'm in the care of, to understand the kind of person that I am and also my requirements if I would need to be hospitalised again.”
On taking part
“It made me feel more, complete. It's had me reflect on who I am and what I know to be true about me. And I think, it's helped me to integrate my mental health experiences with me when I'm well. And so, I feel like I have a better picture of myself in totality. As a person versus my mental health is separate from me as a person and and that sad, disappointing, scary part of me…it just sort of helped me to integrate, I would say. Or it was an opportunity for me to integrate.”
“Made me feel about myself?…so take more control, I’m taking more control of my mental health, considering all these admissions I’ve had over the years, it makes me feel I have a say in my care for the first time, yeah. It made me to feel I’ve taken control of my care”
Hope
“Well, it's, it's for [the police’s] education. You know, the police need to educate themselves. It's very tempting as a, as a brown skin, as a Black person to to hate the police. It's very tempting to do that, but I like to try and see hope in everything and I hope that they can come to learn ethnic minorities on a deeper level because then that removes their fear of us and then you can have some sort of progress because you're working with a person, you're not working with a person that you see as a threat to you, and hopefully will reduce some of some of the kind of, you know, psychological microaggressions or actual violence. I mean, there's been many cases of of police murdering Black people with mental health.”
“Just try and be part of the solution. Just try and be part of the solution. You know that that that's the only thing that we can do. Yes, we can rage and yes, and we can fight back and everything like that. That's all good as well. But try and find practical Solutions, long term change, I think that's Our responsibility.”
Honouring Uncertainty
“I feel confident that something is in place in case I become unwell and I'm just happy that my my preferences have been put in place beforehand and I I believe I have confidence that the system will work, that the advance statement, you know if if if it needs to be implemented, it will work.”
“I don't think [the police] would be that interested in advanced statements. I really don't. Yeah. I'd say it's a good idea if they wanna just make sure that people know how they would like to be dealt with and a bit about them before they just get seen as just another patient. But at the same time, like I just mentioned, I'm not too sure how, whether you know once we do something like this, whether it will actually be implemented or not, or the staff will actually use it to make decisions and what happens with us.”
Influencing factors
“I feel that if you know if a person is to ever do need psychiatric care, if it does get adhered to, then the potential to have a much more comfortable stay in hospital is there, but that's if it's really listened to and I feel like it might need an advocate for it, you know, if you become incoherent, um, and you're not able to refer back to it yourself, then maybe some advocacy would be complementary.”
“Maybe I'm like 30%, 30 to 40% confident, because I think in high pressure situations people might not feel like they have the time to, really do, do the review and try to put things in, but going through the process has me feel a bit more at ease that I at least had a say in how I wanted my care to go.”