We recruited participants between 12th August 2021 and 31st January 2022 and completed data collection on 30th April 2022. Once we met the recruitment target (n = 12), we purposefully recruited only males to ensure participants across the gender spectrum were equally represented in the data. Twenty participants were assessed for eligibility and 17 enrolled (i.e., three did not meet the inclusion criteria). Most participants were female (n = 13 [76%]), white (n = 8, [47%]) and living with schizophrenia spectrum disorder (n = 8 [47%]). The average age of participants was 48 years (range 29–70). Fourteen (82%) had baseline overweight and obesity.
We followed-up 16 out of 17 participants at 12-weeks (i.e., one lost without reason) and included them the analysis (95%, high retention). All 16 participants joined Meet Your Mentor (100%, strong engagement). For the programme sessions, five participants joined ≤2 (31%, low engagement); two participants joined 3–5 (13%, sporadic engagement); seven participants join 6–10 (44%, good engagement); and two joined 10–12 (13%, strong engagement). For the Mentor Check Ins, four participants joined ≤2 (25%, low engagement); no participants attended 3–5 check-ins (0%, sporadic engagement); four participants attend 6–10 (25%, good engagement); and 8 attended 10–12 check ins (50%, strong engagement) (see Fig. 2). The one participant lost without reason joined Meet Your Mentor and neither attended any subsequent programme sessions or responded to the Mentor Check Ins.
We approached data saturation on some categories after 13 first interviews although we interviewed all 16 participants retained at 12-weeks, which confirmed that we did not need to construct new categories or themes. First interviews lasted on average 53 minutes (range: 32–75) and second interviews lasted 45 minutes (range: 9–95). We constructed seven themes centred on WHEEL’s acceptability, which we present according to the programme components. These themes focussed on how helpful or not the adjunct support was in accessing and engaging with the programme.
Meet your Mentor
Theme 1: establishing a therapeutic alliance
This theme considers the acceptability of the person delivering the adjunct support.
Participants welcomed the opportunity to disclose their concerns prior to starting the programme, with some expressing that the mentor established a psychologically safe space.
I think, personally… the empathy, the kind of active listening [the mentor] had going on, I think that was really good. That was something I think most people want… for me [it] was quite beneficial because it kind of made me think about weight a little bit more. I think that people with mental health problems, we have a, we have a way of kind of ignoring things, especially things that make stress bad or make us not feel great. (Abdel, first interview).
Participants reported that their weight gain was due to the side effects of antipsychotics, which left some of them feeling out of control and demotivated. Hearing the mentor reflect on their experiences in a clear and respectful manner validated some participants’ experiences and authenticated the credibility of the information that followed.
So hearing… there are… a lot of people that do have this problem from this particular type of medication, was, was very reassuring I suppose because you know when it is being brushed off all the time by psychiatrists you do start to think, ‘Well is it just me then?’ (Fionee, second interview).
I’m on medication that literally forces me to eat… it’s either that or I end up in a psychiatric unit, like, I’m sorry but I don’t have a choice (Abdel, first interview).
Theme 2: value of the booklet
This theme describes the content of the booklet and if participants perceived it as useful or not in addressing their barriers to initiating the weight management programme.
The information in the booklet was novel for some participants. They reported that they felt optimistic about initiating a weight loss activity (i.e., either starting WW® or changing their food choices).
I felt encouraged to start the Weight Watchers®, but I didn’t feel pressured. (Fionee, second interview).
I think what I took away from that as the most useful thing was about making the decision, having the power to make the decision at that particular time, when I’m about to eat something. I think that’s stuck with me. (Denise, first interview).
Others valued the opportunity to share their own and hear others’ experience of weight management in the context of SMI.
I found it useful going through the booklet… not necessarily things useful to know, although that craving part was the biggest thing that stuck with me. But going through the booklet was good and just feeling that you know there’s obviously a lot of other people in the same situation and you’re not alone with it can really help. (Fionee, second interview).
Two participants, Denise and Marcella, noted that the common challenges to losing weight in people with SMI (e.g., negative self-beliefs, reasoning bias and safety-seeking behaviours) were irrelevant to them. They both suggested tailoring the booklet to their specific concerns, which we enacted after Marcella (e.g., by asking participants which challenges were relevant to them before discussing it further).
Theme 3: a mentor that helped pinpoint specific barriers to joining
This theme describes the outcome of Meet Your Mentor and if it supported participants to initiate the programme.
Most participants expressed concern to be in an unfamiliar place or attend a social interaction. For some, it was because auditory-verbal hallucinations (e.g., critical or threatening voices) felt frightening, which negatively affected their desire to engage with other people. For others, it was fear or judgement or paranoid concerns about the potential harm from others.
… [The voices say, they say] you can’t do anything right (Matthew, second interview).
It could be quite [er] hard just to introduce yourself… like a [er] completely new… environment… because you can feel people are staring at you, or, or you could feel people talking about you… So that is quite, yeah that’s quite, can be quite scary. (Marcella, first interview)
A few participants spoke of how low self-esteem seemed to exacerbate their fears of being rejected, negatively judged or attacked by the group. Some participants also expressed that it was difficult to wake up and join a session because of the antipsychotic induced fatigue.
As I have a mood disorder, low self-esteem is already an issue for me (as I presume for others in the group). I have no intention of being weighed in front of others or (a)nother. I know I am overweight and it causes me great distress and anxiety. I do not want to add to this. It is embarrassing to be weighed. A judgement is being made. (Jane, email correspondence shared with permission)
Access to a mentor with whom they had established a therapeutic rapport allowed participants to share these concerns. This, in turn, opened opportunities for collaborative reflection (i.e., using if-then statements, reframing reasoning style).
[Me and the mentor] talked in a very gentle way about the problem that I was having and it offered a kind of solution… that was such a long time ago and my, my life has changed a lot since then, that I don’t have those feelings anymore because it’s like [the mentor] addressed them in the first meeting that we had. (Alice, second interview)
Mainstream weight management programme
Theme 4: acceptability of the in-person vs online programme
This theme centres around the acceptability of the mainstream programme, specifically the modality in which it is delivered.
We initially invited participants to join the in-person sessions. However, most participants expressed a strong desire to attend the online sessions, which we enacted in our TOC. That was because some felt able to manage worries more easily from a distance (e.g., reducing eye contact, staying mute and keeping the video off). They reported that these strategies reduced their concerns around being in unfamiliar social settings, though it prevented them from learning they could manage without such safety-seeking strategies.
I’ve just gone into a room full of people that I didn’t get and thank god I could keep myself mute and nobody could see me. Where, where do I look [if I went in-person] when I say something that [others] just don’t agree with? You know, how do I manage my emotions? (Tansi, first interview)
[Online] is probably [er] better because you could [er] switch the, [um] the video off if [er] if you had [um] if you didn’t want to, to talk or to, to engage. And [er] that’s probably quite… useful for [er] for people with [er] with psychosis [er] because [er] the online features that let you just [er] hide yourself. (Marcella first Interview)
The online modality enabled participants to still engage with the open-group. This was because it removed fear of social situations, which was a barrier for some participants.
[The online session] was really good… because we talked about [um] I… just [typed] in the chat I said, ‘Look I’m just listening really and learning, here today, so I won’t say very much’. (Tansi, first interview)
So [online is] great and the things that I liked about [the coach] was that he spoke to everyone individually [using the one-to-one chat function]. (Abdel, first interview)
However, other participants expressed difficulties with using technology to access the online sessions. The frustration and rumination that followed sometimes led to unhelpful coping strategies (i.e., over-eating and binges)
… for me it was the stress of trying to get on [the online session]… when you’ve got a mental health problem and you’re trying to get somewhere and you can’t get in and then you’re trying and trying, it just makes stress worse, which then exacerbates the condition, which meant that I ended up opening a box of Lindt chocolate and having most if it last night after, after the session because I just didn’t feel… well it was really, you know, I was just so angry… I messaged a friend and I said “I’m I don’t think I should do Weight Watchers at all… I’m going to give up. (Abdel, first interview)
Theme 5: joining the programme amplified their sense of vulnerability
This theme focuses on the ongoing concerns reported by our participants that negatively affected the acceptability of the mainstream programme.
Whether it was the in-person or online programme session, some participants shared an ongoing sense of feeling either unsafe or that they did not fit in the group, which they attributed to their diagnosis of SMI. They described this as amplifying their sense of vulnerability, which meant they avoided attending the sessions.
I wish I could think of another word other than I didn’t feel emotionally safe… because… I can’t afford to be putting myself in situations where I may feel a little bit vulnerable. (Christie, first interview after they declined to join any more in-person sessions).
One participant shared concerns that the mainstream programme was not culturally appropriate to their needs, particularly the foods discussed in the session. This added to a sense of feeling pushed out from the group.
People like myself, the people who still eat their own foods, who don’t really venture into westernised type meals and foods… [the programme] doesn’t really cater towards people like us and how do we make it more culturally competent and able so that people like myself who unwittingly have to gain weight because of the medication can then hopefully be able to manage our weight. (Abdel, second interview)
Mentor check in
Theme 6: maintaining an interaction with the mentor
This theme circles back to theme 1 and discusses the continuity of care that the Mentor Check Ins provided.
Most participants described the check-ins as a chance to talk with the mentor about their weight loss, which they thought was lacking in the mainstream programme.
I did really enjoy that side of it… because even though I did go to the workshops, you don’t always get the opportunity to speak when you’re there, and although you do have a check-in with the coach it’s, it’s still, it’s very different to having that conversation with [the mentor] each week… it was just more personal. (Fionee, second interview)
This sense of protected time motivated participants to continue going to some of the sessions.
I think mental health plays a big role … ‘cos sometimes your mental health can make something very small turn into something big task… but I I think for me one of the motivators was the fact that we had catch up calls… there was something about them that made me think ‘I’ve got to see this through, I can’t back out’. If I had joined on my own will and without the involvement of [the mentor], maybe after session one I probably would have given up, but [the mentor] helped me stay motivated. (Hassan, second interview)
I found them really good, really motivating to just, and encouraging, you know, to feel like I could look back on the achievements of the past week and have someone to share that with. If I was left to my own devices, I think it would have been a very different experience. (Fionee, second interview)
Theme 7: define the nature of the mentorship
The participants offered recommendations for our future development, which this theme summarises.
All participants expressed that they valued the adjunct support, though it was notable that most also recommended a peer supporter with a lived-experience of SMI to address their ongoing feeling of isolation.
It’s because a peer support worker can relate to you more easily and they’re cheaper ‘cos the NHS pay them less. (Alice, second interview).
The content of the mentor check-ins needed refinement. One participant wanted a more structured check-in to account for their occasional disorganised thoughts and speech.
No [the check-in was] really good when I could [answer]. I just wasn’t clear on what the check-in, I mean I know it was about how I… maybe a set of three questions [like] ‘how are you today’, ‘how has your week been’, ‘anything you’re looking forward to’ or ‘what was a great moment’. The reason I say that is because I’ve got fast acting bipolar so the thoughts are there, they just go really quickly through my mind. (Tansi second interview).
The frequency and scheduling of the Mentor Check-Ins were also noted. Some participants felt that regular, scheduled, weekly check-ins were helpful and others wanted more flexibility.
No I think once a week was good, and I enjoyed it being a phone call. I think it was about the right amount of time because it gave time to think to change. (Fionee, second interview)
There’s nothing wrong with the mentor, it’s just I thought if I can’t do a Thursday and I’m free on a Wednesday that week, it means at least I’m not missing a session. (Hassan, second interview)
Weight loss outcome
The mean self-reported weight change was − 4·1 kg (SD: 3·2) at 12-weeks from enrolment.
All proposed changes, and those subsequently enacted, were recorded using the TOC method (see Additional file 1: Supplementary material 8). The key changes were as follows. Meet Your Mentor: (1) tailor the booklet to each participant’s concern and strengthen the perceived relevance of the information provided; Meet Your Mentor: (2) extend from 15 to 30-minute telephone calls to allow for participant story telling; mainstream programme: (3) send email reminders to avoid participants’ forgetting their sessions.