Theme A: Participant related factors
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A1
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[...] We all had the same reason as wanting to move forward in our lives and wanted to take steps to ground ourselves well and wanted to know more about mental illness in order to develop coping strategies and to liaise with the mental health teams and professionals more beneficially. SP3 (II)
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A2
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CF11 (FG): Whereas the families seemed to be really, they had no.
CF12 (FG): Crying out for it [information].
CF11 (FG): And they were like.
CF12 (FG): Sponges, absolutely.
CF11 (FG): And wanted to come forever. And wanted to come every week and never wanted to leave and I’m getting support and this is great.
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A3
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[…] once we’d heard about it we were keen to learn as much as possible. We always were asking questions if you like at the hospital (Laughs). […]. The minute I heard about it I decided oh absolutely we have to do that. FP12 (II)
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A4
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And I was seeking some support for myself, so I was on a waiting list for eighteen months and I repeatedly would ask when are they running it [EOLAS programme] out? FP9 (II)
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A5
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[…] we knew that it was a good thing, the whole idea of support groups. FP2 (II)
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A6
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Well you see they would be appropriate in the sense of the criteria, they would have either one of the diagnoses but the motivation and then they just don’t turn up. CO4 (II)
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A7
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Yeah, because you hear a lot of the time, you know, people are crying out for the information, they’re looking for the support, they’re looking for the education and then when it’s offered you’ve nobody, you know […] CO12 (FG)
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A8
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We did a service user survey on,, what other interventions they would like and they were looking for other alternative supporting therapies and once you offer them, you literally could have a yoga group, it’s free, it costs like a gazillion tons of money to go to a local yoga group and they still won’t go,, you know […] sometimes it is just person specific to why they’re not going. CO13 (FG)
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A9
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But in the spring when she [family member with mental health problem] was in hospital I was saying to the people that were organising the service user group.. I says are you going to ask [name of person] and she says, yea her but she probably won’t go because she’s not interacting even with the OTs…. But they did ask and she didn’t go to it. FF8 (FG)
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A10
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I suppose they [service users] don’t want to sign up for anything, we find it hard to get them to change, make one little change, you know to their routine or their week. CO16 (II)
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A11
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[…] we have families like asking for support all the time, but for some reasons there’s, like I had four people who said yes but haven’t turned up to EOLAS CF10 (FG)
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A12
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And there was loads of cases like that. People that we thought were prime candidates and would’ve really benefitted from it. No interest in going, didn’t really. And people who we’d good relationships with. And we were selling it to them and this is great and trying to tell them, no interest. Or would say they’d come and wouldn’t turn up […] CF11 (FG)
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A13
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Yeah and it’s very hard I suppose to get people interested in it as well because when you get better and when you get out of hospital, you’re kind of thinking I don’t want to associate with that [...] SF4 (II)
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A14
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Q: Had you known about it [EOLAS], you said your mother was involved in it before that. Had you known about it from her? Had she told you little bits about it?
A: She did it but that was like a few years ago and I just had no interest in hearing. I was off meds that year and I wanted nothing to do with mental health just because I wanted to kind of convince myself I’m past all that. And I just wasn’t open to listening to it. SP2 (II)
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A15
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I know service users get very disheartened. Because they say, oh that’s another group, a fly by night. And that’s why people don’t get involved. Because so many things have come to the wall over the years. FF11 (FG)
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A16
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I did sort of feel you know the service users, in one setting or another had heard a lot of the information before. And the buy in from them was a little bit more difficult. They wouldn’t always come back, they’d be but I’ve heard this a hundred times. You know they weren’t as interested. CF11 (FG)
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A17
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I suppose he’s [husband] living with this since he was fifteen and he feels you can’t teach him any more about it. So, yeah, so no, we, since – in the first few weeks when we were going and, and as I say, he did enjoy it, but he just dropped out of it then after two or three sessions. […] For the programme itself, it was very good, but for me, I suppose I didn’t really learn anything new during it [over the years had done a lot of reading on family member’s diagnosis]. FP8 (II)
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A18
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And there was somebody that was referred, who actually was given a referral [...] it wasn’t an appropriate referral, because the person was in a position maybe within their journey where they were finding things quite challenging. SF1 (II)
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A19
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[…] people need to be in a really good place to do it. That I think is another kind of impeding factor, you have to be really well to do it. Because I’ve seen people struggle with it and I’ve seen people unwell […] But you know everybody has to kind of function at a higher level. […] people who are newly diagnosed - it’s nearly too early, people are only coming to terms with the diagnoses, they might be linked in with the EIP [Early Intervention Psychosis] program. CO16 (II)
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A20
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[…] I suppose their readiness you know, how ready people were for it. Somebody maybe only out of hospital maybe a couple of weeks and was still on the road to recovery but probably not exactly there yet d’you know [...] Then you might have had to even say to them, you know I’m not sure you’re ready yet. You know there seems to be, you know lots of adjusting of maybe medication or that you’re in quite intensive psychology at the moment. You know, do you really feel you’ll be able for this and will it benefit you the amount that we’d want. CF2 (II)
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A21
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[…] it was just having enough time for the team to identify suitable people because I mean if you have someone who is just post discharge or you know actively unwell, you know something like this for some people mightn’t be very helpful. CF1 (II)
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A22
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Now there was actually one person, it was a couple and the husband struggled with it. And found it very stressful and didn’t come to the very last one. And there is that kind of thing, their daughter was newly diagnosed. And they were in a really difficult space. CF4 (FG)
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A23
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And I think particularly family members, like you know yourself the family members, it’s often years down the line when they’re really ready for something like that [EOLAS] CO2 (II)
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A24
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And that is why I think maybe some people might be reluctant because they are kind of ashamed to think that some members of their family is undergoing mental treatment. FP11 (II)
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A25
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[…] it’s such a small town […] l it seemed to carry just that little bit more of a stigma, […] I think it’s just everyone knows everyone, that’s what one lady said to me, she says everyone knows everyone. [….] one lady said I was really nervous I’d know people in here. And the others had said that they were the same, because she said ‘I think if I did know someone I wouldn’t say anything’. CO1 (II)
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A26
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You see the way it works a lot of people don’t want to be – even though they know they’re not well – they don’t want to be there and they don’t want to be around other people who are not well.
I think it’s, the stigma to their illness, but that’s what I thought. FP1 (II)
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A27
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I was late diagnosed, I was 36 so I had my own stigma. You know around that so I wouldn’t have wanted to have been seen to be going to clinics and if I went to outpatient appointments I used to look around. SF14 (FG)
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A28
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[...] we were running two groups. One in [rural town] and one in [Urban town]. And a couple of people decided that they would travel the twenty miles to other group, you know, those are just sensitivities that are there. CF5 (FG)
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A29
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Because I said I would go anywhere to get this service, I just didn’t particularly want it in [local area], you know, I would travel to it, which I did. FP9 (II)
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A30
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[...] there was a lot of anxiety about the family members coming in to a room with other family members, that they were almost felt that they were, they were exposed […], they felt very vulnerable coming in to that space and saying I, my relative has, has Schizophrenia or whatever. So there was I think a bit of a barrier to get past selling it, that this is a safe space and the, that actually meeting other families in your situation may actually have some benefits for you rather than keeping it to yourself, I explained it to them like that […] the service users were more accustomed to being among one another, if you like, in waiting rooms and clinics and what have you, so had less of that concern about being exposed. CF7 (FG)
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A31
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I suppose I was worried some of this information could get back [to their relative] and would not be reported as I had said it and I wasn’t sure what the reaction would be. And I was a bit fearful in that respect, so I kept it limited let’s put it that way. FP3 (II)
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A32
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I wonder, [names town] is such a small area everybody knows everybody and I wonder if that was kind of a factor why they didn’t come. CF1 (II)
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A33
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I know one person who said, God 15 years ago if I had have went in front of a psychiatrist about my son or my daughter or my brother or my sister, I’d been told, oh no sorry I can’t discuss anything with you. Now we’re saying it’s ok to come in and we’re able to discuss stuff openly in a group. They [family participants] found that kind of strange and I have to say you could understand that [...] CF2 (II)
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A34
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We have a family member who rang up the day before we were starting and she said that she wanted, she was all signed up to do it. But her daughter wanted to come along [to the family group].. Because she didn’t want her talking about her. She wanted to make sure she wasn’t saying anything about her. So in the end the lady didn’t come herself, you know because obviously the service user can’t come to the family one. SF11 (FG)
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A35
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[...] a lot of families would be saying, oh I don’t know about that and whether the service user, my family member would like it. And we were saying, no we won’t actually be discussing anything about their care. It would be a broader picture stuff. So I suppose our family member numbers were small initially but those numbers began to grow. CF2 (II)
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A36
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Yea well you see, I think there is obviously a limit, in terms of the demand. Because there was clearly a neglect of people, service users and families. And some of that’s been taken up now, yea. But there is, because we’re fairly, we’re a very rural area and the population is fairly thin. CF5 (FG)
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A37
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The, we’ve, we’ve run it about four times and I suppose psychosis, we don’t get that many new referrals so we’ve offered it to all of our patients four times now who have experienced Schizophrenia or bipolar psychosis and we’ve kind of run out of people now on our books, some people just don’t want to do it, point blank - so we haven’t run it in I’d say eighteen months, whereas before that it was every year. CF9 (FG)
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A38
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[...] when EOLAS goes into an area initially you're picking up on all of the people who have been there for all of the generations who haven’t experienced EOLAS, all right. Now two, three years in you’ve probably provided EOLAS to all of the existing service users and their family members. SH5 (II)
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A39
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I’m not sure if we have the population for EOLAS. […] But again I think it’s down to the population here in [ES06] at the moment. You know I do think it’s about that. Like I mean as I said to you we’ve a very, like [ES06] is a very deprived area. Very socially deprived area, there’s pockets of wealth and there’s extreme pockets of poverty. So we’ve lots of, we’ve a huge traveller population here as well. They’ve settled down, you know nomadic travellers and then we’ve a Rohingya community here, we have all different nationalities living in [ES06]. So it’s a very deprived, very poor socioeconomic group. Lots of involvement with you know Tusla, child protection, all that kind of stuff. Lots of, we’ve methadone clinic on site, so we’ve all those problems before you even start with the mental health. Do you know what I’m saying? So that affects sustainability as well. But like I mean somebody psychotic and you know might get a diagnosis or whatever, but you know their main problem is drugs. And you know how is EOLAS going to work for that person? You know it’s not what they need, they need, you know the addiction, you know psycho-ed around whatever, do you know what I mean, so. That’s the priority, exactly, yeah. And a lot of it we’re managing crisis here. We’re crisis managing a lot of people. CO16 (II)
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A40
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I think for first episode we, we thought we’d have higher numbers, so we don’t particularly have, or, or we do, but then they’re non-nationals and they move back home or they move catchment area, they don’t have a family, or all those kinds of various things [...] CF6 (FG)
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A41
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CF11 (FG): We had one young guy who attended us. And his mam had been asking us, there’s no support. There’s nowhere for me to go there’s nothing. EOLAS we thought, we rang, I’m not going to that why would I be going to that. We couldn’t believe it. Do you expect me to be going in there on a Friday evening?
CF12 (FG): Sure I can’t be giving up my evening… Sure it’s dark, how am I supposed to get there?
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Theme B: Programme related factors
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B1
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Q: And in terms of the co-facilitation aspect of the programme was the fact that there was family member who was co-facilitating it did that help?
A: that was the biggest approval tick in the box, that person understood exactly where all of the rest of us were coming from […] they totally did that if that person wasn’t there it wouldn’t have worked. FP5 (II)
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B2
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I think it was really positive to have somebody with a lived experience of it and I think the, the family and friends, it really resonated with them [...] CO6 (II)
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B3
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That [peer facilitator] was really good because […] the language was very simple from the family member. You know it was always made feel at our own level, which was a good combination. FP2 (II)
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B4
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I think it was better having that other co-facilitator [service user] there because they were sometimes able to break that down a bit more. And also to kind of, I would just say it seems a bit more kind of friendlier. SP4 (II)
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B5
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A lot of people find that [peer facilitation] very helpful because the family member [peer facilitator] had a young person, a kid [child] like all the other people had, […] I trying to say the person facilitating didn’t have a spouse it was a child. So it was great a huge piece of identification with other members there which was good. FP3 (II)
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B6
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And I think that is the reason why EOLAS works, is because of that co facilitation. And that’s who they look towards. It’s not the person, the professional whoever that is. It’s the person who has the son with a diagnosis of schizophrenia. CF4 (FG)
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B7
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Well I found that [co-facilitation] helpful as well because at least there was a person delivering the course that had mental health issues as well. So they would have insight to what it’s like to have mental health difficulties and their understanding would be better as well because they’d be talking and able to relate their own experiences as well. SP1 (II)
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B8
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We were able to get [consultant psychiatrist] to come to do a session on medication. We had great talkers, [Name] I think came as well from [community mental health service]. So we had good speakers and people were interested in hearing them. SF2 (II)
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B9
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[...] the psychiatrist comes in and that’s good because they [participants] can ask all the questions they want. Then, what do you call him, the pharmacist comes in and they’re oh my god, they’re just what does this tablet do and how does this work? You know they’re really engaging with them. IES15DSUF03
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B10
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[…] to actually have the psychiatric team to come and talk to you on a one to one basis […] and answer your questions, I never thought that would be possible. […]. They [fellow participants] all felt exactly the same way as me. It [attendance of a psychiatrist] appeared to have a big impact on them and they were delighted to be able to ask the questions you know. They were very vocal and they did ask whatever they wanted to know. SF2 (II)
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B11
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I suppose, yeah, the guy, the pharmacist and the psychologist that came in to talk to us, […] I suppose it brought the, the top people down to our level and we were able to relate to them and it didn’t feel like they were up at the top and you couldn’t reach them […] we were encouraged to tell them how we felt, so it wasn’t as if, you know, that we were to be nice and kind of polite and kind of say, you know, everything is hunky dory when we know it’s not and that, and asking if there’s other different medication that could be offered instead of what’s being given at the moment […] FP7 (II)
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B12
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There is something about that consultant going in to the group and meeting people at a more egalitarian level rather than actually sitting, not literally, but metaphorically at least, sitting behind the desk and having a list of symptoms and, and if the families as well only ever meet the consultant in that context of either crisis or bad news or […] for them to meet the consultant in a more social atmosphere and a more, a more level playing field is a really powerful thing, I’ve noticed that several times […] CF7 (FG)
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B13
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But you’d have to say that you know, EOLAS is about sharing. And if it’s about sharing you get a certain value in three people sharing. But you get much more value if it’s six or nine. You know that it just allows for a broader conversation, a broader range of experiences, a broader range of sharing. And all that you’d want from an information and education programme. Because as you would know from the previous research. One of the things people valued most was hearing others and their experiences. SH2 (II)
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B14
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[…] being a participant in a lot of ways supported my recovery. Because you feel like you’ve got something to contribute. And you see and hear other people’s frustrations and sharing of their lived experiences. It was very supportive in that regard. Even though EOLAS is not therapy. It’s not that it’s group therapy, or intended to be or anything like that. Just having people chat and interact with each other and you know over the tea break or what have you is therapeutic in and of itself. SF7 (II)
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B15
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I think that it’s such a good program, there’s something very empowering about it. Again it might be the first time you’ve met someone with your diagnoses, the first time you’ve had open conversations about your experiences of the services, whether it’s hospital or what. Like just having that kind of peer support within the EOLAS. Where you’re talking to people who have shared the same experiences as you. SF14 (FG)
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B16
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When I went to the course, there were other family members there and I found people were very hesitant to speak [...] I remember everybody was very cautious so I felt very exposed in a way [...] FP9 (II)
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B17
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But he [family member facilitator] found the hardest thing was actually getting the, even though all the family members did kind of benefit a lot. But they were very reluctant to kind of come forward and kind of talk. You know they were kind of, the group was quite quiet. SF10 (FG)
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B18
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Sometimes they’re quite happy not to speak I think. It’s just that they have a contribution and I think when they go into the little groups, that was a good help. I wouldn’t pry it out of them. FP2 (II)
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B19
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Q: Did you find it when you were facilitating groups that it was hard to kind of get the group chatting and talking, or?
SF11 (FG): It was hard, at times it was hard. It was difficult. But the good thing was when we had the break. I realised they were approaching us. And they were happy [...] I think that was very important, to have that break. And having coffees and tea and they approach they join that way, that was very important.
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B20
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[...] but that to me would be the major drawback that I was the only one with a spouse, they were adult but they were children adults, child adult…but I know, I appreciate that it's quite difficult to set that up [a group for spouses when you are trying to get a group together. FP3 (II)
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B21
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FP9 (II): [...] only one person dropped out of the group.
Q: Oh that’s fantastic.
FP9 (II): That person I suppose, I felt sorry for them, it was a sibling, whereas the rest of us it was all our children that was unwell.
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B22
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I suppose one of the things that may have had an impact is, we had 2 females and 8 males and then one female couldn’t really attend due to work commitments. So we were left with one lady with a lot of males. So I feel that might have impacted her attendance going forward. CF1 (II)
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B23
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We saw one person drop out. But I think that person, would’ve been probably ten or fifteen years younger than the rest of the people that were participating. You know what I mean; you do need to have people of similar age, because they’ve similar experiences. FF2 (II)
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B24
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It's [the handbook] excellent not just to have something that people come back time after time, to have something that is a recognisable course you know an actual curriculum. FP10 (II)
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B25
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I’ve also used it [the manual] in my training a lot as well, in my work as a peer supporter now as well. I find it very helpful because in the sector that I’m in I deal with a lot of people who have psychosis and part of their diagnosis. I find it’s very useful especially when someone is distressed. SF4 (II)
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B26
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[…] if I have a communication problem with my [family member], I go to the section on communication and I look at it and I say, well how should I approach that. That doesn’t say about spending money or, if she was looking for more money from us right. But it told you how to communicate. So I do refer to the manual a lot because you never remember it all. But that’s what the manual is for. FF8 (FG)
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B27
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FP11 (II): […] I didn’t really read through it [handbook] on the programme, like they [facilitators] would just refer to it and it's up to yourself when you would go home to look back on it. I would leave the book open and say to my son did you see that page. Did you look at that you know so it triggers us to talk about different things.
Q: Yes ok so it became like a prompt to be able to bring up certain conversations and topics?
FP11 (II): Yes.
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B28
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I suppose our first few ones that we rolled out there was a huge amount of referrals for people with psychosis and bi-polar disorder, but we find the content is very much more psychosis, kind of unusual beliefs, all that type of thing, so [...] sometimes when you get to the end [of the programme] you would see it in their evaluation that [...] they would just say that they found that there wasn’t enough on their own [bipolar] diagnosis. CO1 (II)
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B29
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[…] this information [in handbook] is going to be changing, not even year by year but week by week and month by month and I don’t think, I don’t feel comfortable, giving people information that is so static and doesn’t actually represent all of the information that’s out there…I think that everybody should have all points of view and then be allowed to make up their own decision. But the information within the handbooks do not allow that. CO5 (II)
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B30
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I think the group experience it’s what I’m doing exactly now, sidetracking […]. And sometimes when you sidetrack [in the group] you get an interesting piece of information to develop. A conversation opens up. The book [handbook] doesn’t dictate if you understand me, somebody says something and oh right okay, no I didn’t realise that, okay FP12 (II)
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B31
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[…] didactic book learning is very important. But there’s also a wealth of learning in terms of experience. And having a dialogue between how things are supposed to be according to the books and how things really feel, and their experience in real life. And having that kind of a dialogue back and forth, cross referencing back and forth is the most effective way to make the book useful and applicable to my life. SH1 (II)
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B32
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I found flipping through books could be distracting for the person next to them or the book would sometimes take away, it was like as if they needed the books to be able to talk whereas I think it would have been much more free flowing had it been maybe on a powerpoint type thing CF2 (II)
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B33
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But it [the handbook] can feel somewhat prescriptive at times when the conversation might lead elsewhere. CF7 (FG)
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B34
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[…] we had it on during the day so for some family members it wasn’t practical to come during the day, which meant I suppose maybe taking time off work or d’you know that kind of stuff. CF2 (II)
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B35
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[...] we might’ve had one or two youngsters [siblings of person with a mental health issue], you know but they haven’t been able to stay in the course. Because of the timing, so like availability to commit to the eight weeks which is obviously an issue [...] siblings are very seriously affected. But it just seem like they’re disinclined or you know they’ve got college or work commitments. FF9 (FG)
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B36
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[…] can we be flexible in it? Is there any way that we can condense this into a shorter period of time because 8 weeks is a huge commitment. Can we run it over 3 half days for people, you know what works well for the person? […] I think there’s a better chance of getting people for shorter periods. […] just even at weekends […] we’re actually talking about on the letter, […] if we had the 3 options over the 8-week period, over 4 weekends whatever way we break it down, and if people don’t actually fill it and send it back to us we know they’re not going to be interested. […] that’s what we’re thinking of going forward. And when we do get some sort of baseline and say ok the majority of people are going for this, let’s just go for it. CO4 (II)
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Theme C: Provider related factors
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C1
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[…] you kind of need the, the key worker really to kind of go out to the service user or the family member and say come on, this is great, I’ll come with you, I’ll be there on the first night and all, and then they will, they might buy in because they’ve had a long standing relationship maybe with that person and they trust that they have good judgment in this being valuable to them, and that was really the key to kind of getting people to come along and trust that it was going to be a good process. CO13 (FG)
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C2
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I suppose in terms of our community mental health nurses in our area have been really, like, like you say, they really know the families inside out, so in terms of identifying the referrals with the likes of ourselves, but then doing a bit of, doing a bit of selling as well where there’s a bit of reluctance or a bit of hesitance, to kind of say ah, you know, listen, you know, it’d be good for you, you know, sure go on and give it a go and, you know, a lot of, there’s a lot of, I suppose it’s not just for EOLAS, but in terms of I suppose just all kind of community based mental health services, there’s so much that rests in that role I think, it’s such a key key role. CO15 (FG)
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C3
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But anyway the first meeting then took place now and this is a small town. And I’m just being honest again, okay. I would’ve thought most of the town (Laughs) the children and the whole lot of them. Only two people turned up to the first meeting, because as said, they didn’t make the phone calls. The following week [FF8 (FG)] they made all the phone calls and we had twelve. And from then on it was grand. FF7 (FG)
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C4
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And I think then the response I suppose to the referral is very important. Is that’s actually the contact that [Name of coordinator ES10] would actually make contact and say you know, thank you for. We’ve got a referral in and just give them more information and organise and arrange to meet them etc. CF5 (FG)
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C5
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And then also you know the clinicians are really busy. And they’ve lots of new roles and there’s things happening in the HSE. You know that is affecting you know trying to get these courses run. SF10 (FG)
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C6
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And the second element that’s causing huge difficulty is the competition. We’re doing Enhancing Teamwork, ARI [Advanced Recovery Ireland], we’re doing the SRF [Service Reform Fund], we’re doing EOLAS, we’re doing all the kind of day to day training that each mental health team has to do. There's about ten initiatives. Staff doesn’t have a, they just don’t have the capacity to do it all. SH4 (II)
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C7
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If people are stretched in their own roles then they're not going to have the time to do the add-on bit that’s actually required. SH5 (II)
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C8
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I thought it could’ve been better resourced, from the HSE perspective. So in other words it tended to be taking people, adding work onto their daily workload. Instead of saying, right we’ll have a dedicated team to actually roll this out and embed it in the local area, if that makes sense. FF2 (II)
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C9
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[…] what I’m kind of noticing is that there’s new programmes nearly coming that we’re expected to be part of as an MDT [Multi-Disciplinary Team], yeah, I suppose as a sector, just, just to try and kind of keep up with this stuff […] how you keep that on the agenda with this I suppose ever growing and ever, yeah, ever, ever increasing, populating agenda of, of programmes that are somewhat expected or, you know, so how do you prioritise and it’s, you know, I do think it’s, it’s difficult. CO15 (FG)
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C10
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We have 2 people, clinicians who are trained [in EOLAS] and who will run it but they are not championing it because they are championing other things and everybody cannot champion everything. CO5 (II)
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C11
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I know there’s here in this region there’s the early intervention for psychosis and that’s kind of taken over as well, which is kind of putting EOLAS in a difficult kind of position you know SF4 (II)
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C12
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It’s [EOLAS] kind of taking a back foot in the last eighteen months because all our recovery people are gone, ARI recovery principles, they’re new and exciting recovery college, yeah, and we kind of lost the momentum as a result […] CF9 (FG)
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C13
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In [county in ES15] […] it boils down to the consultants over there, like they have totally refused to engage with. And I think it’s because they have been chosen as the pilot site for the first episode. And they see the behaviour family therapy as fitting that block, even though the person who does that training in the service wants EOLAS, you know she’s saying well I think it complements it and we should be doing it. We haven’t, we’ve made constant representations to the consultants over there with absolutely no response. CO3 (II)
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C14
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Yeah there’s a little bit of that [competition with EIP] here alright, yeah there would be yeah. Yeah there would be that element, now in saying that some of the facilitators on the EIP [Early Intervention Program] program would be involved with EOLAS and would be involved in the family carers. So there would be loads of conversations had but there’s probably very little doing and you know action, there’s very little action and you know yourself and I know myself, you know the heart is really in what they’re doing all the time, so there wouldn’t be that level of commitment. CO16 (II)
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C15
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I think there is a bit of the service users and [Name of coordinator in ES10] will be able to tell you more. But definitely the service users and family members being asked to attend both [EOLAS and ARI] CF3 (FG)
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C16
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[...] it’s the same family members, service users [...] And I think we need to be conscious of that and they’re being pulled for, for everything. CF10 (FG)
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C17
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[ES06] which had been very involved in recovery colleges and all that. There was lots of competing demands and where they ran programmes there were small numbers. And there was limited success. SH1 (II)
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C18
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[...] it’s not advertised enough. FF3 (FG)
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C19
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But it definitely needs more visibility. You know if it’s out there a bit more, people will go looking for it. SF10 (FG)
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C20
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So I think it’s a visibility within services issues, more than an EOLAS visibility issue. And I think it’s up to the services to work on increasing that visibility. SF1 (II)
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C21
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And I don’t think an awful lot of people really know about it, I don’t think there was that, there was that much information out there that it was going on like to family members and service users. FP1 (II)
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C22
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You see I worked as a [names place of work and role]. So I would have done facilitation skills, interviewing and coaching, you know and developing things. So I suppose it’s an area that I would have been fortunate enough to be involved in. So listening and just making sure, sometimes by not saying anything by not interrupting and to get out of the way of the discussion, can be the best way to facilitate. FF1 (II)
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C23
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Yeah, and I think it’s important that the facilitator would be a little bit open to sharing like their, so say the last girl [peer facilitator], she was a little bit more boundaried about her own stuff, so we’re gently trying to say if you feel comfortable sharing something, because people get a lot more out of that, so, whereas the first person – maybe because I knew him better as well, but he had been on an inpatient unit for seven years and he’s been in community now for probably the last seven and there was people like going what, you were in there for seven years, are you serious like, you know, and actually with him sharing that kind of stuff it really helped people, and being honest [...] CF10 (FG)
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C24
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I suppose it really would be down to focusing on the facilitators and their ability to facilitate [...] it is an education group with a process, a piece. The education is actually minimal, most of the time it’s just setting up the conversation and the topic but not necessarily offering any particular information and having a process through this to have the conversation and through hearing what the group is saying the facilitators will have or should have the ability and the knowledge to offer and signpost the required information. So that’s how your group can deal with any subject, about anything and can be sustainable into the future because the group is then set up to adapt to the people that are in the group. You know psycho education only works if you are giving and offering the right information at that point in time. CO5 (II)
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C25
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FF10 (FG): [...] I’m not a lover of worksheets and you know things like that so I avoid those things like you know and you know I don’t think people, especially that have come together for the first time ever, you know are particularly comfortable either maybe sitting down. You’ve literacy issues and you’ve everything. Whereas if you can sit and chat you know whatever.
Q: Yea it takes that barrier down?
FF10 (FG): Yea and I mean I’m sure EOLAS don’t want you going. And they have said this, they don’t want you going too far off the scale which is fine. But within reason anyway I think, I’d say most facilitators feel quite confident, or at least flexible in terms of. And the more you do it the more flexible you might get. (Laughs).
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C26
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But you need knowledge of how to facilitate. Do you know and how to do that well and co facilitate and developing you know just an expertise to be able to understand that the dynamics and how to work with it and all that sort of stuff. […] I mean we’re confident in the product but at the end of the day, access to it is through the facilitation and your experience of the product is going to be as good as the facilitation. Do you know what happens in the room. And that’s where the facilitation training is key. SH1 (II)
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C27
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The huge strength of it [train the trainer training] was we covered the course content largely and I suppose the facilitators we as facilitators were being trained as to how to deliver those modules. So we were actually going through the course and in a kind of an intensive way and we got trained to facilitate that and how to do deal with you know difficulties that might arise in it. So that was useful […] FP6 (II)
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C28
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But one of the things when we did the training. An emphasis was sort of that it’s not about you, or your mental health experience or your story. It’s more about the people [participants], The people in the room. So it’s not an opportunity for you to talk about yourself. So it’s more to get them to talk about themselves. SF10 (FG)
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C29
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I got on well with both the clinicians that were there. Because I would’ve done a lot of work with them kind of before EOLAS. So we were pretty comfortable working with each other. And I suppose it kind of; it probably makes the rest of the group that are there feel more relaxed. Because we kind of were able to bounce off each other. And it seemed quite smooth. So I think definitely having kind of to get to know the other person you’d be working with is kind of quite important. Just so you can, you get to know each other’s style. SF6 (II)
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C30
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[...] you do need to get together and get to know each other. And kind of, you know feel comfortable and feel safe that you’re on the same wavelength. And kind of, we had a few, well we had obviously I met him a few times before. And you know we did work very well together, like I mean I liked him. And kind of we liked each other’s company. And he was able to relate to stories about his own experience you know and that was really so helpful. And like his competence was so reassuring you know. Because I suppose, well I would find it very hard to be with a facilitator who might kind of maybe be selling a different message. Or going kind of. Going rogue, or yea (Laughs). And I’d find that very uncomfortable do you know. And it is very important I think that you kind of understand each other. That you know that you try and support each other. Or that you pick up on each other’s kind of approach and that you kind of try and kind of work in sync. CF5 (FG)
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