Four overarching themes were common across the focus groups. The first theme was dynamics of identity that found identities could be split into personal and professional identities that were ‘integrated’, ‘separated’, ‘permeable’ and ‘visible or invisible’. The second theme was the impact of language and labels used to describe these groups led to ‘expectations and invalidation of a label’. The burden of these labels is described by ‘weight of the label’ with motivations to use language to help ‘rebalance the power’. The third theme found ‘learner and expert’ identities regarding their ability to perform their roles and engage in lived experience work. The fourth theme was ‘Them & Us divisions’ that were bridged through ‘Feeling similar and different,’ by understanding ‘Barriers and Connections’. A summary is provided in Table 1.2.
Table 1.2
Overarching and subordinate themes
| themes | Sub-Themes | Trainee | EBE | Carer | EBQ |
1. | Dynamics of Identity. | Separation | x | | x | x |
Integration | x | x | x | x |
Permeable | x | x | x | x |
Invisible/Visible | x | x | x | x |
2. | The impact of language and labels to rebalance power | Expectations and Invalidation of a Label | x | x | x | x |
Weight of a label | x | x | x | x |
Rebalance the power | x | x | x | |
3. | Learner and Expert. | Learner | x | x | | x |
Expert | | x | x | x |
4. | Them & Us Divisions | Feeling similar and different | x | x | x | x |
Barriers and Connections | x | x | x | x |
Theme 1: Dynamics of identity ‘ a strange mix of personal and professional and caring.’
This theme described how personal and professional identities applied to each stakeholder that requires negotiation. These identities sometimes permeated each other, were actively separated, or integrated, depending on motivations to conceal or reveal lived experiences, dependent on perceived stigma.
1.1: Separation ‘ I’m determined for those identities to stay separate.’
This sub-theme described EBQ, carer and trainee participants’ need for separation between their personal and professional roles. This separation reduced the burden of lived experience on the individual.
Trainee, Serena, spoke about separating her role as a trainee clinical psychologist and her personal life. “I understand why reflective practice is really important...when you’re working clinically, but I don’t want to be reflective in my personal life...I want to be reflective in my professional role, when I come home…I’m a sister, daughter, partner… I’m determined for those identities to stay separate...”
EBQ, Sharon, discussed how lived and professional experiences were considered as distinct, and felt forced out of the conversation as a professional with lived experience. “…they are social constructs that tend to be thought of as mutually exclusive. I mean they’re not in reality.... someone was coming to train us about how to do service user involvement and he was making a virtue of… this isn’t about professionals and… I felt like that professional bit of me was being pushed out of the room.”
Anthony highlighted how his carer experience was consumed by healthcare issues and how there was a need to separate from this burden. “…sometimes...everything’s around service provision... rather than getting drip fed what was going on with health and social care..., sometimes carers just need that escapism...”
1.2: Motivations and Conflicts to Integration ‘ I’m almost wanting to bring those two senses of self together,’
Trainee participants wanted to integrate their lived experiences into their roles but did not know how to do this, whereas EBE participants were able to do this confidently.
Trainee Ruth identified how she wanted to integrate both her lived and professional experiences in her role, which was different to her earlier motivations.“…I’m almost wanting to bring those two senses of self together … much earlier on in my route into training…I wanted to push them separately... Whereas now I'm... keen to bring those two things together...and feel like a more coherent…version of me...”
EBE, Zara, spoke of how she sought to integrate models she identifies with into the teaching she does. “I do quite a lot of teaching in…universities… coming from a very much trauma informed (approach)... what you can do is try and embed aspects of that in…, people’s day to day working.”
EBQ, Maria, said that speaking about her own personal experiences helped reduce her expert status and connect her to EBEs. “I felt like because of my expert status they were like… here she comes telling us what to do… I had to really express where I come from more and more... so…they don’t see me as the professional.”
1.3: Permeable ‘ I don’t think you can necessarily untangle the two identities,’
The sub-theme of permeable identities represented the seeping of the professional role into personal life and vice versa. This was described by trainees and EBQ participants similarly. Carer participants articulated that their own personal identities tied them to those they supported.
Trainee, Mary, who is a trainee clinical psychologist and also worked in lived experience roles, described how her lived and professional experiences were inseparable. “… I think it depends on who sees me...I don’t think you can necessarily untangle the two identities.”
In a comparable way, carer, Jane, spoke of how the carer role and the health outcomes of those they support are inextricably linked. “… it’s always the way that if the Carer goes down, the person they care for is always down, so that’s two people in hospital.”
Trainee, Ruth, spoke of the HCPC regulations and how there was an expectation to abide by the professional code of conduct in her personal life. “….in that profession there’s a sense of responsibility... that doesn’t just finish when you finish your day… you are expected to uphold the professional values in your personal life...”
1.4: Invisible/Visible ‘ sometimes our voices are just not heard and sometimes…we’re going to be stepping on…people’s toes…because we need to be heard…the doctors can’t admit to being a service user …’
This sub-theme described the visibility of lived experience within the profession. Trainee participants spoke of a need to share their lived experiences but felt that clinical psychology spaces did not feel safe for this. EBE participants talked about how the purpose of their roles was to increase visibility. In contrast, carers felt they and their needs were invisible.
Trainee, Jess, spoke of how the trainee identity occluded the visibility of lived experience. “I wouldn’t describe myself as an expert by experience but... we had some trauma teaching, and it was quite distressing...there wasn’t anything about looking after yourself in the lecture… the lecturer had almost come in on the assumption... this isn’t going to affect any of you...”
EBE, Denise, identified how the purpose of the EBE role, in contrast to the EBQ role, was to make lived experiences visible. “…sometimes our voices are just not heard and sometimes… we’re going to be stepping on… people’s toes… Because we need to be heard… the professors and the doctors can’t admit to being a service user...”
Carer, Miriam, identified how the carer’s needs were secondary to all, meaning their needs were not recognised by anyone. “… one’s own needs can get so suppressed that they’re not being recognised, even by the individuals themselves.”
Theme 2: The impact of labels to rebalance power ‘ In effect, any label, it’s how it’s used…so you can throw whatever label or term at me …’
This overarching theme described how labels used to describe groups in clinical psychology training reinforced stereotypes, resulting in ‘expectations of the labels’ they were understood through and their behaviour in response to this. The labels had an impact on perceived power dynamics across groups. The participants identified how carefully chosen labels could rebalance the power. There was common consensus that labels were invalidating and burdensome.
2.1: Expectations and invalidation of a label ‘… people often don’t expect...a mixed-race young woman to turn up. ’
This sub-theme captured the different perspectives of trainee clinical psychologists, EBEs and carer participants regarding labels used to describe them. It described how labels reinforced stereotypes held by others and could be invalidating based on perceived meanings associated with them.
Belonging to racial minorities, regional and class identities were discussed across trainee participants. Some felt they did not fit the typical clinical psychologist stereotype.
Trainee, Jess, identified how others did not construct a clinical psychologist to be mixed race and this expectation was invalidating. “...I’ve had service users go, oh is it you that I’m seeing, I didn’t think you’d look like that…, people often don’t expect...a mixed-race young woman to turn up."
Trainee Mary described how in some ways she does and does not fit the stereotypical clinical psychologist, “…it’s sometimes the messages, because I’m really conscious that I’m, white, posh, female....you often hear that you’re the perfectionist, you’re this, you’re the that, which is completely not me at all…”
EBE Phil identified labels and language were chosen for EBEs and could negatively or positively impact those being labelled.
Language and labels have changed over the years…they didn’t care how it affected the individual... In effect any label, it’s how it’s used...so, service user, expert, it doesn’t matter…you can throw whatever label or term at me...
EBEs concurrently agreed that the EBE label was the best option they had but it did not convey the complexity of their expertise. For similar reasons, carers rejected their label, and also ‘informal carer’ and ‘unpaid carer.’
2.2: Weight of a label ‘… the word expert feels a bit pressured...’
This sub-theme described how language and labels used to describe groups in clinical psychology training impacted the carer or EBE, due to the power or burden it exerted.
Carer Joy described the impact the carer label had on her, replacing her identity of being a mother with an impersonal term. “At the beginning being a carer hit me like a ton of bricks…I was a mum and the next thing I have this crisis worker... said I’m the carer. There was no warning... It was like someone had taken my role…as mum, put it in the bin and given me a new title...”
EBQ Simon, observed the effect of the expert label exerting additional pressure. “When I heard the title Experts by Qualification... the word expert feels a bit pressured… I think of Experts by Experience all the time and I’ve never thought that could… put a lot of pressure on someone...”
2.3: Rebalance the power ‘… those structures give you power…so it’s how to rebalance that...’
This sub-theme identified motivations across each group to rebalance power. Trainee participants felt a need to reduce their power, carer participants wanted to increase this and EBE participants wanted to flatten the hierarchy. The sub-theme identified how language and labels could allay power differences.
Trainee, Freya, identified how the label of ‘Doctor’ created a power difference between the patient and the EBQ which could be rebalanced with language. “there’s a bit of a debate… when you get Doctorate…do you come in and say, “I’m Dr so and so,” or…, “Just call me (name)?... coming from that standpoint of, we are all equal… I guess... those structures give you power...So it’s how to rebalance that.”
Carer, Miriam, advocated for a reevaluation of the terms used to describe carers to reduce stigma and increase power. “...we need to come up with a new word. That word carer...it’s so undervalued…It’s got so many negative connotations, like we are propping up members of society, but no one gives us value.”
Theme 3: Learner and Expert ‘ …we’ve all got expert parts and learning parts.’
This theme identified how groups in clinical psychology training were constructed as both learner and expert in juxtaposition. Trainee participants focused on their own inexperienced identities by comparing themselves to EBQs, constructed as experts. EBEs and Carers constructed learner identities of trainee clinical psychologists. All stakeholders were constructed as ‘Learners’ regarding their abilities to engage in effective coproduction.
3.1: Learner
This sub-theme constructed the learner identity of trainee clinical psychologists as individuals uncritical towards lived experience work, or trends in their profession and how they may have taken things at face value without critical thought.
EBE, Michael constructed the trainee as a learner “…...their inability to critique their own professional knowledge, if somethings fashionable within their profession at that time, they can’t step back…. and see why they…might want to challenge... I think particularly for people…early on in their career are really precious of that knowledge...”
Carer, Miriam, thought of the trainee as a learner as they did not feel their reality of their lived experiences was understood by them, when they took things at face value. “Sometimes, they don’t want to hear what you say because it’s not what they would expect...they can’t imagine that somebody is saying… they’re taking medication when they’re not, and I find sometimes… trainees have… resistance to the reality”.
3.2: Expert
This sub-theme described how expert identities were constructed by constructing oppositional groups as learners. The EBQ constructed expert identities of other EBQs as those that listen and learn from others.
Carer, Joy, constructed the expert carer as someone who could spot the needs of other carers new to their role as they had been through the learning process of becoming a carer. “...we could see... perhaps it’s their first time being there… they’re asking questions, but they’re not quite asking the question that they want to ask... We know what it is we’re looking…because we’ve been that person.
Trainee, Serena, viewed her supervisor as an expert by seeing herself as a learner. “...my supervisor...can come up with all of these amazing suggestions...I know about that theory, and… this theory but why did I not connect them in the same way…?
EBQ, David, suggested the expert EBQ was someone who listened and learned, “there’s been a lot of furores…. around ethnicity, race, representation, whiteness, and expertise and saying what… psychological approaches are vs. learning and listening...the generational comment is... important…people coming… on to training... increased communication… access to very different views. These are powerful forces and we’re feeling the effects now. It’s going to be good to be part of that...And not me as an expert guiding it but seeing how those forces shape it...”
Theme 4: Bridging Them & Us Divisions ‘ The bridge between two different types of knowledge.’
This overarching theme identified how EBEs, carers, Trainees and EBQs felt more like their in-group and different to others. Sometimes they also felt different to their own social group, influenced by stances on mental health. Each group felt barriers to other groups and wanted to find ways to connect.
4.1: Feeling Similar and Different. ‘ I feel most connected to people who move beyond an individual experience and turn it into a collective change.’
This theme described how each member of the focus groups felt similar but also different to members in the group, with shared goals and motivations to support their group.
EBE, Zara, said she related to EBEs who wanted to make a difference for the group. “I feel most connected to people who move beyond an individual experience and turn it into a collective change.”
EBE, Michael, connected better with EBEs who understood their mental health experiences similarly to him, “… if someone’s promoting a sort of purely medical perspective, I find that quite difficult to connect with....”
EBQ, Sharon, highlighted her feelings of difference with other EBQs as a research psychologist with lived experience. ‘...at first feeling they’re all pussy footing around me, is it because I’d said to occupational health about my mental health…I thought it’s because I’m a researcher, they’re thinking… she’s going to discover we’re crap at stats....”
4.2: Barriers and Connections ‘ …very difficult…getting in that them and us space…but we’ve got a very good coordinator of service user experience who... pours oil on troubled waters and keeps us all… in line…steering that difficult path between how...we get things changed, but... not alienate everyone in the process.’
This sub-theme described how there were barriers to meaningful lived experience work created by EBQs with motivations to connect groups.
Carer, Louise, noted how EBQs were slow to implement changes from her input. “What worries me is in our involvement...people are still thinking... we could have... trauma informed care for this service... These are not new ideas… yet they’re still not being introduced.”
There was a consistent narrative from trainee participants of their disconnection with EBEs. Trainee, Mary said, “It doesn’t feel like there’s really open communication…it feels very much that it’s led by when they’re on the timetable, that’s when they’re available.”
EBQ Simon, highlighted the structural barriers EBEs experienced. “…we’ve got a limited budget … there’s only so many (projects)…we can fund... they’re never going to feel equal. They’re not on the same payroll, they’re not embedded into the structure on our course...My guess is (they) don’t feel like members of staff...there is an us/them divide still.”
The theme highlighted how to negotiate and bridge connections between groups. Carer Benjamin articulated the power of emotion in enabling this. “If you sort of sprinkle the emotion in there when you’re... talking to them, that actually gets through to them...Better than…just quoting loads of technicalities.”
EBQ, Sharon, suggested that service user involvement required negotiation. “...... It’s very difficult getting in that them and us space…but we’ve got a very good coordinator of service user experience who... pours oil on troubled waters and keeps us all… in line…steering that difficult path between how...we get things changed, but... not alienate everyone in the process.”