An intervention to improve the quality of life in children of parents with serious mental illness: the Young SMILES feasibility RCT

Children and young people’s group sessions

Every session had specific aims and objectives, which for both age groups remained consistent throughout (Table 4). However, activities and communication style varied depending on the abilities of the CYP. Adapting to the learning styles of the CYP in the group was also an important role of the facilitators. The themes traversing all sessions were mental health literacy, communication and problem-solving skills. The outcome of each session was facilitated through the creation of an ‘imaginary family’ for younger children (made from cardboard cut-outs/cartoon characters created electronically and printed) and a ‘graffiti wall family’ for older children. A normal session included a ‘getting to know you’ (first session)/’welcome back’ and a ‘check-in’ on previous week, ‘ice-breaker’ activity, activities based on the session aims and snack time. A ‘weekly challenge’ at the end of each session was included to orientate and tether the CYP to the next session in order to optimise engagement.

Parent/carer group sessions

The focus of the parent/carer sessions was determined during the CYP session in the previous week (Table 5). This was to retain the child-centred basis of the intervention. CYP and parents came together in the final ‘Moving on together’ session to review progress and for the last few activities that focus on hopes and fears, achievements and moving forward. Activities for each session were standardised, but not prescriptive. As long as they met the overall objectives of the sessions and were consistent with the ethos of the Young SMILES programme the facilitator was afforded the freedom of action to change their approach to better suit the different needs and learning styles within the group.

Qualitative interviews

Acceptability is a key priority in the design, implementation and evaluation phases of complex interventions. 117 It is perceived as a necessary but not sufficient condition concerning the effectiveness of an intervention. Broadly speaking, acceptability is a construct that examines the degree to which an intervention is accepted by those delivering and/or receiving it. 117,118 Definitions have varied considerably, depending on what theoretical perspective the researcher adopts. For example, two studies119,120 investigate acceptability in the terms of patient attitude or satisfaction, whereas other work121,122 conflates the construct with patient behaviours, such as engagement and adherence to treatment. This lack of consensus has served to undermine the credibility of acceptability as a valid assessment instrument. 117

A post-intervention qualitative evaluation of Young SMILES was conducted with CYP, parents/carers and eligible referrers. This was to determine acceptability among those that received the intervention, as well as to assess how practitioners and potential referrers were able to deliver the intervention. These studies (four in total) took place after the primary outcome point. Interviews with CYP and parents/carers focused on, inter alia, barriers to and facilitators of attending, what they liked and disliked, and if they thought Young SMILES helped their family. Referrer and practitioner interviews explored which factors facilitated or hindered the implementation of Young SMILES (see Chapters 5 and 6 for a description of the methods and analysis). 123

Sample size in all of the qualitative studies conducted was governed by the numbers of eligible participants referring, delivering or taking part in the intervention, rather than by traditional concepts of data saturation. In qualitative research, saturation is reported as a criterion for achieving an adequate sample size, and thus no additional information is expected to enhance or change the findings. However, this is an inappropriate quality marker where sample sizes are limited by other factors, including trial participation. In such studies, information power is a more appropriate concept,123 with the final sampling frame guided by the study aim. A less extensive sample is needed when participants taking part are targeted because of their characteristics that are aligned with the study aim, in this case trial (and intervention) participation. Recruitment ceased when all intervention facilitators and participants had been invited for interview. Data analysis in the context of this feasibility study was focused on achieving key insights that contributed to or challenged current understandings of intervention acceptability.

Resource utilisation

We noted high completion rates of the resource utilisation questionnaire across all time points (> 90% of all participants). Participants were willing and able to respond to questions from the CA-SUS regarding accommodation, education, hospital service utilisation and community services utilisation. However, of the 27 community services listed in the CA-SUS questionnaire, participants reported no utilisation of nine of these services at all three time points. To minimise participant burden, it may therefore be advisable to remove some or all of these services from the list of community services questions in a future trial.

Outpatient appointments were the most common type of health-care use, with nearly one-third of the parents reporting that their child had attended an outpatient appointment within the previous 6 months. Ambulance use and A&E attendance were also relatively high in our sample. Other than GP appointments and input from a social worker and a family support worker, children were scarcely reported to use any other community or social care services.

Response rates were zero for questions regarding medication prescriptions. They were also very low for questions regarding interactions with the criminal justice system. Given that these categories are important, especially if a future economic evaluation takes a societal rather than just a health and personal social services perspective, for an intervention that is likely to have an impact on resource use in these areas, we will consider alternative methods of data collection in addition to a self-report questionnaire.

Data missingness

Table 22 gives an overview of all missing data for each outcome measure within each group from baseline to the primary end point (4 months).

Theory for analysis

As detailed previously, in Chapter 3, acceptability is a key priority of feasibility studies. Sekhon et al. 117 inductively synthesised the findings from an overview of systematic reviews on acceptability in health-care studies, and subsequently applied methods of deductive reasoning to better theorise the concept of acceptability. This culminated in development of the ‘Theoretical Framework of Acceptability’ (TFA), which presents the following working definition of acceptability that can be operationalised in the service of clinical research:

A multi-faceted construct that reflects the extent to which people delivering or receiving a healthcare intervention consider it to be appropriate, based on anticipated or experienced cognitive and emotional responses to the intervention.

Reproduced with permission from Sekhon et al. 117 © The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (https://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated

This definition considers the different ways acceptability can be explored (i.e. cognitive and emotional responses), in addition to providing a hypothesis (i.e. cognitive and emotional responses that could affect engagement and adherence outcomes). It comprises seven components, each of which is identified and defined in Table 23.

A key feature of the TFA is its ability to overcome the distinction between prospective and retrospective acceptability, where the component constructs of acceptability can be assessed before, during and after the delivery of the intervention. Constructs often overlap and influence each other and the extent to which they converge and diverge is an empirical question for the researcher. 117

Following open coding using thematic analysis, the TFA was used to assess acceptability of the Young SMILES intervention among parent participants in accordance with the seven constructs of the framework.

Intervention coherence

The ways in which parents understood the Young SMILES intervention varied. Some were clearly aware that the aims of the intervention were focused on the impact that their mental health difficulties were having on their children’s QoL; they highlighted the principles of a whole-family approach and how it was different from the support that had been available previously:

I’m hoping that he can take SMILES away with him and like I said before, if his friends are feeling crap and he sees that there are signs of mental health there, that he can go up to his friends and say, look you can get help, you can talk to me and what have you. I think if I was in this generation that we live in now and I was a 10-year-old and I thought my head was going a little bit cuckoo, I’d like to know that there are kids there that do understand and that they are there to help.

W17P17A1

I thought it was really great to start with. Yeah, it was really good because it kind of involves obviously the family. So obviously [child] never had sort of any – I’d call it professional intervention – at all in the past. It’s just been sort of how we try to put it into layman’s terms for her.

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On the other hand, several parents’ expectations were not met as they had anticipated that there would be a specific focus on the problems that they had been experiencing personally as a result of their own mental health condition. For some, the non-alignment of their expectations and experiences left them feeling unfulfilled and unable to perceive a benefit from attending the intervention:

I thought there wasn’t much discussed around mental health by yourselves from an adult’s point of view. It was mainly about sort of ‘how can you help your children?’, which is fair enough but I thought there could have been a bit more adult stuff as well because everyone in that room had some mental health problem where nobody really talked about it. I generally don’t like to tell anybody about my mental health but if I’m in a room with other people and then we’re coming, you know, with their sort of problems it might have been somewhere that I could unburden myself a little bit.

N33P01A1

I wanted help for myself because ideally how am I meant to help [child] if I’m not right myself? I’d be a bit of a hypocrite really, for you to help anybody, regardless of them being your partner, your child, whatever, you need to start on yourself.

W17P17A1

A key misunderstanding among these parents related to the parental aspect of the intervention. Many highlighted that, based on the information provided prior to attending, there were uncertainties about the reasons for attending and the way in which the parental element would be delivered. Based on their lack of awareness and understanding of the intervention, initial apprehensiveness towards attending was apparent:

[I was anxious because] I was going to a group where I wasn’t sure of who’s going to be there, what people are going to think of me, because a lot of my mental health issues is always something to deal with, in regards to what others think of me, whether I’m going to be judged or not.

W17P17A1

The way it was explained to me was, it was a thing for children, and if you wanted to go as a parent, like you were dropping them off, and you wanted to stay or whatever, it was a bit like a nursery, where you can either leave your kid or come back for it. I felt like that was the impression I was given. I could have took her and stayed and left with her, or I could have took her and left her and come back for her, or whatever. You know? And I didn’t realise that there was, I thought it was just like a chitty chatty room for the adults, I didn’t realise there was actually stuff going on.

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Affective attitude

Parents reflected on their motivations behind attending the Young SMILES intervention. Aligned with the aims of the intervention, developing an understanding of the value of equipping their children with an increased awareness of parental mental illness and the benefits that could bring was acknowledged. For many, the Young SMILES intervention was a unique opportunity in comparison with the support their family has previously received focusing more on equipping their children with the knowledge and awareness required to understand the ‘whys and whats’ of their illness:

I wanted him to be able to have an understanding . . . the signs of what to look out for, not even in myself, but say for his peers, amongst him and what have you and even himself . . . I was willing to give it a go and what have you, for the simple reasons, I wanted [my child] to have a bit of an understanding as to why I can be like the way I am.

W17P17A1

Yeah, well it was kind of like a relief, it was kind of like a weight had been lifted off my shoulders because whenever I’ve been in hospital in the past we’ve always told the kids, oh mum’s having her meds changed, and, mum’s having some therapy with the doctors, or, she . . . but we’ve never gone into why and what and, you know, all that.

W16P16A1

In addition to the benefits that the intervention could bring for their children, motivation to attend also concerned the potential gains they saw for themselves:

To get a better understanding of what my depression was, then I think it would be brilliant. So, I was really interested in doing it and I was quite happy when I got there.

W12P12A1

Reflecting on their experiences of attending the Young SMILES intervention, parents generally expressed positive views about how it affected them. The intervention instilled a sense of hope for the future through the recognition of the improvements that they had observed. Most were in favour of the group approach as if facilitated the ability to communicate and connect with other parents in similar situations. The value of having the opportunity to speak to other parents to whom they could relate was valued more than a one-to-one approach with a professional:

Yeah, it was, it was lovely, it was an experience that I won’t forget, hopefully one that I might improve, I might . . . if there’s another group available I might . . . now that I’ve done one group I might . . . yeah, I’ll try another group.

W11P11A1

I’ve visited psychologists and psychiatrists in the past . . . you know, there’ve been nurses and different doctors involved and hospitals involved, and stuff like that, and, you know, you get all these different people around you and you can make your problems seem a lot worse than what they are already, you know? . . . why do I need all these people involved? . . . what’s going on . . . I suffer with paranoia anyway and to have all these kind of people in your life, you know, it can be quite draining and quite scary at times . . . but going to Young SMILES and speaking to the parents there at Young SMILES and the staff at the Young SMILES I felt like my problems were halved, like I belonged there and that I . . . you know, I had . . . I’ve made some good friends and that I wasn’t this psychopath.

W16P16A1

I still find it . . . I’m under therapy at the minute and she does one-to-one on me and I struggle when it’s one-to-one sometimes because I know that she’s picking into me and she’s trying to get an understanding as to what makes me either tick or what makes me upset and things like that. So in a bit of a sense, on a one-to-one, I do keep myself guarded because it’s not necessarily, you’re in a group full of people that are going through pretty much the same stuff as you.

W17P17A1

The welcoming informal atmosphere projected when attending the intervention contributed to parents’ positive evaluation of their involvement:

Yeah, to be honest, it felt . . . the atmosphere when you walk in, when you first walked in, it didn’t feel like I wanted to be there, but like the second time it was more that I wanted to be there and then the third time it was more like a homely feeling . . . It was just in conversation or just generally making a joke, asking if you wanted a brew or coffee or whatever, asking if you wanted fruit and stuff like that.

W11P11A1

Yeah, it was lovely, like the adults and the children, and we were just all joking and mucking about, and it was just lovely: lovely atmosphere.

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Although attitudes to the Young SMILES intervention were generally positive, the group approach was not preferred by all. One parent felt that it led to unprofessionalism among attendees, with individuals failing to act in the ways they should:

I don’t think so much difference. They are working in same criteria but in like a different way, but the doctor and nurses way, it’s more concerned way and more professional way to comparison to Young SMILE. Young SMILE is little bit low . . . Comparison to Young SMILE they are not very professional . . . Like you are very considerate on every single point. I wish that other Young SMILE members follow this rule and regulation that you are working, they have to consider these things. Like every time you come round and you are very polite and normal, you are not very strict, but you are normal and kind and understand everything. So, that’s the main thing.

N18Y01A2

Furthermore, there was a belief that longer and more sessions (similar to those received by their children) would have provided more opportunities to work directly with their children. Moving the focus away from their children, the purpose of the intervention, parents spoke of the benefits of providing more time to help them to overcome initial apprehensions, to develop better-quality relationships and to allow for more dialogue within the parent group:

I think they should be a little bit longer, where parents and the children are more together because there was never really any sessions where it was me and [my child].

W17P17A1

In fact the only negative thing I’ve got to say is that it wasn’t long enough . . . Yeah, because things were just getting going and things we’re just . . . you know, we were just unwinding a little bit more, a little bit more and a little bit more, you know, stuff like that. So, I think another 5 weeks and we would . . . it would have been great, you know, but it finished and then it was like, oh, nothing, you know, got nothing now to do.

N16P16A1

Burden

Parents recognised the efforts that were implemented by the facilitators to ensure ease of participation for them and their children. The opportunity to become familiar and to build relationships with some of the individuals involved in the delivery of Young SMILES prior to the group commencing was valued and considered as a means to enhance their willingness and ability to attend. The importance of relationship building was apparent throughout. Parents appreciated the facilitators’ professionalism and the positive environment that was created as a result of this, reducing burden to participate:

I’d be lying if I say I wasn’t anxious about going to the group and what have you but with [Young SMILES facilitator’s] help, she reassured me to say that pretty much everyone that’s going to be there, are in the same predicament as myself. So she made it a little bit easier to get there, yes, I was willing to give it a go.

W17P17A1

Because she [child] doesn’t like change and she likes to know . . . she likes to build a relationship with someone before she works with them . . . I think [Young SMILES facilitator] was lovely. I think her approach . . . her happy, bubbly personality, I think really took off in the group. She was very easy to talk to and any issues I’ve had outside the group, she’s been fantastic and supportive. I think that’s really good. I like the way she’s communicated with school too. I like the way that whole communication was done in school, thought it was brilliant.

W07P07A1

They [facilitators] respected everybody’s privacy and they respected everybody’s opinion, they were just really, really nice and fair and they were quite . . . they’d go into stuff, questions, in quite depth, some things and they had all the boards, so everything was written down and they would ask everybody a point, and everybody was given answers and suggestions, and everyone was getting it written down.

N29P01A2

However, there were suggestions that forging positive relationships with the facilitators alone did not ensure the acceptability of attending. A number of factors placed specific burdens on many parents. In one site, the arranged transport was, at times, unreliable, which had an impact on the accessibility of getting to the intervention venue and had notable consequences for parents and their children:

When I took him one time because he was playing around with the other kids and stuff but when the taxis were late, he was like, I don’t want to go because he knew he was going to sit in a long taxi ride, get there and then just have to sit in a long taxi ride back, to be honest with you, which isn’t a lot of fun for an 8-year-old.

N17P01A1

It’s too late to send you the taxi . . . [I felt] very, very low and I spent 1 week to recover, because my mental health is like this, if it is bad, even though it’s nothing, even it’s nothing, nothing, if it is bad, I’m not going to get forget for 1 month, why it’s happened like this.

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Anxieties around attending contributed to the reluctance to engage. For some these anxieties could not be overcome, resulting in the inability to attend at all. Other narratives described how such difficulties had been overcome over time by parents exposing themselves to their fears:

I probably wouldn’t have done it . . . due to like anxiety problems and being in like big crowds and stuff like that, I don’t like big crowds.

W11P11A1

At the beginning I’d be very reluctant, yeah, because I’d be . . . I’d panic about it and I’d think . . . I’d just think, oh no, no, no, but once we’d signed up and with the kids got through to the . . . I don’t know, the final however many it was then I thought, oh well, you know, we . . . it’s gone this far now so I’ll have to attend it. So, yeah.

W16P16A1

For one parent the burden of attending the Young SMILES intervention prevailed. The attendance of their children continued because of the perceived pressures being placed on them:

Because [my children] wanted me to [attend] and the NSPCC were putting quite a bit of pressure on to go as well, yeah . . . I felt really under pressure, because the [my children] weren’t going to go to the last session either, because school were a bit funny about them having time off. Because it’s coming up to their SATs [Standard Assessment Tests] and basically the NSPCC said we’re not having that and they rang the school and said, look, you’ve referred them, they’re coming, we’re having this party, you’re all coming, aren’t you? And I was, like, I felt I had to agree with them.

W01P01A1

A lack of attention and sensitivity to the cultural needs of families was observed by one parent. One participant reported that there was insufficient suitable food and that, as the only participant whose first language was not English, they did not have enough time to contribute to group discussions, leading to a negative experience:

Like when they offering a food and when they start the group they said, we’ll have a Halal food, but Halal food is very small amount.

N18P01A2

English is not my first language but I was . . . I’m . . . when I was in group I was very brave, still determined to talk to in Urdu . . . in English and still determined to give the sufficient answer, but they just step in, next, next, next . . . For example, if I am expecting from you that that’s the Urdu group and you have to talk in Urdu, stay in Urdu, that time I have to consider.

N18P01A2

Ethicality

The Young SMILES intervention was significantly aligned with parents’ value systems. They expressed a need for their children to have valuable ‘child time’, something many felt was lacking currently as a direct result of their mental illness. Separation of the child and parent sessions was valued and considered as having a positive influence on their child’s well-being and ability to normalise their personal circumstances. Personally, it provided an opportunity to be relieved of their parental responsibilities within an environment where they could express their thoughts, feelings and experiences without a child ‘clinging to their side’ (N22P01A1) and the fear of how their children would react:

I’ve never really had the opportunity. I’ve never really had much interest in doing a group myself, but the kids, I didn’t know there were groups available for . . . that would teach them about mental health, and stuff like that. So, you know, I didn’t know there were those sort of things out there for young kids. So, when it popped up at the school I was . . . I felt, yeah, that sounds good, yeah.

W16P16A1

I think it was nice because, I think, that if my kids had been sat in with me, in this group . . . you know, like when they used to ask about your feelings . . . well, name some things about [child] . . . I don’t think I could have sat there and read a list of things off about [child] in front of her. I don’t think I could have been as open as I was about my feelings in front of the kids, because I would have thought to myself, it’s not fair lumping them with all this.

W12P12A1

Although the value of separation was consistently reported, parents emphasised the desire to spend more valuable time with their children. They saw the role Young SMILES could play as a means of facilitating this:

I think the group, would have been nice if maybe it alternated, maybe 1 week separated, 1 week together, I think that would be maybe a good way of doing it.

N17P01A1

Yes, it wasn’t . . . yeah, a group thing. So I did enjoy that; but I was upset that we didn’t do any activities with my son. Yeah, that was the only thing that I would have liked to have been doing then, even if it wasn’t every week; just 1 week or 2 weeks, you know, out of the however many weeks it is, just to do something with him.

N29P01A2

The group provided a space that was positively evaluated in comparison with previous support. However, a conflict of patient versus patient narrative was apparent. In referring to what they gained from the intervention, most gains were identified as being unintended outcomes:

I know you can speak to counsellors, but I didn’t really feel comfortable speaking to a counsellor. I don’t know . . . I couldn’t tell you why, just didn’t . . . in my head, I just didn’t want to speak to a counsellor. But, then [referrer] was going on about all this and I thought, well give it a try. Because, I was at first, because I thought, oh, here we go again, [child] put me on another of these . . . trying to get me on this course.

W12P12A1

I do feel a lot better, but . . . about the judging . . . but being in that group, it was like, I can just say what I want and everyone would agree with you. They were like . . . because I said at one point, I said I used to feel awful crying and people just saying, right, I had nothing wrong with me and I was just attention-seeking. They were all like, no, no. She said . . . one of the ladies said, yes some people used to say that to me. She said it used to really upset me. I said, yes it did me, I said, but now I know . . . I said, because I’m sat here with you, all you people, I said I know that it’s not just me in the world. Which I knew it wasn’t, but it was just nice meeting these people.

W12P12A1

Recognition of such outcomes was identified as being unaligned with the values placed on reasons for attending:

I thought it was to see the mental health through my child’s eyes, I didn’t think I was there to gain self-confidence myself.

W01P01A1

The environment in which the intervention was delivered was considered an important factor in parental evaluation. Contrasting views were identified between parents across the different sites utilising different spaces:

It was the [Young SMILES venue] and it was a lovely place and it was . . . wasn’t surgical, like I said. It was like sofas and cushions and everything was just nicely planned out and everything was smooth and everything ran lovely.

W16P16A1

The hospital grounds itself is so big, so obviously it’s not like in the unit where people are, or just sort of be in residence, I guess is the best way to put it. But yeah, being on that site I was like, OK [laugh], this might be a bit difficult. But I guess after the first couple of sessions anxiety lessened, shall we say.

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Opportunity costs

A noticeably small number of issues were raised with respect to what personal values parents felt conflicted with the intervention. The fundamental concern expressed highlighted tensions between themselves and their children due to beliefs about the perceived difficulty attending. These issues were not necessarily developed as a direct result of the intervention:

It’s just not my thing at all. And I just feel like, rather than going, and either upsetting myself or somebody else, in turn, either embarrassing or upsetting [child], I thought it was probably best for us just for us not to go . . . After the first couple of weeks, I did feel a bit bad, but then after the first couple of weeks she was like, it’s not like they’re sitting in a gang. I think the last week she was a bit like, nobody was there for me, which I felt a bit bad, but I was just like, I don’t know, I feel like [child] can be more [child], when I’m not there . . . I don’t think it changed our relationship. She always says this, I don’t show very much enthusiasm for what she’d done.

N07Y01A2

Assessments prior to attending were regarded as too invasive and not family centred, contributing to a feeling of losing control:

But they kept coming out and they did a lot of, like, interviews in the beginning, like, screening things and that really opened a lot of worms for me and led to a decrease in my mental health and then they really got involved and were really pushy and, as I say, they rang the safeguarding people twice.

W01P01A1

The focus on the impact that parental mental illness had on children did not align with all belief systems, resulting in dissatisfaction:

[Young SMILES] points to my mental health damaging them and the whole thing seemed to centralise around my mental health damaging them.

W01P01A1

Perceived effectiveness

Perceptions of effectiveness following attendance were aligned with the principal aims of Young SMILES. Narratives highlighted the acknowledgement of specific improvements gained by their children. Post-intervention improvements in children’s well-being and behaviour were noted. Gaining insight into parental mental illness and improving mental health literacy was believed to be a key driver of the outcomes observed:

Yeah, because it’s helped him cope with his . . . what am I looking for . . . his anger issues, it’s helped him cope with that a little bit as well, so he’s not just coming home and just bursting basically into the monstrous child. He’s calming himself down, he’s going upstairs, he’s sitting on the stairs, he’ll play on his phone and then he’ll come down, if he’s had a bad day. If he’s had a good day he’ll just come in and then make jokes and things.

W11P11A1

I thought it’d be beneficial to the kids because they didn’t have any knowledge about me and my mental health, and stuff like that, and obviously I have days when I’m not myself and I have days when I’m alright. The days that . . . when I’m not myself, you know, the kids can be quite confused as to what’s going on and I just thought that it’d be good for them to have a bit of an insight into other people’s mental health disorders, and stuff, and they looked at it as some sort of disability. They thought if you had mental health you had an arm missing, or something like that. So, they were totally unaware of everything that goes on with mental health and issues, and stuff. So, I just thought that they’d benefit from it greatly . . . So, they’ve been quite sheltered from it, from my whole mental health side of me . . . So, then, you know, they had a bit more of an understanding about me and about my ways and certain things that I do and, you know, stuff like that. So, yeah, it was kind of like a relief really.

W16P16A1

Consequently, positive changes on the family environment, family relationships and cohesion were reported, specifically easing existing family tensions:

I think he was a bit better after Young SMILES, he was a bit more understanding and a bit more helpful, caring really, he understood a bit better, but I don’t know what was said to him because I haven’t had a conversation with him, about what went on in the group, just little things and I’m not going to.

N17P01A1

Yeah, I’d say it has helped my family. The kids definitely have a better understanding of me when I’m having a bad day, low day, you know, and stuff like that, and just say, don’t worry, mum, we’ll help you do this, we’ll help you through this. And, you know, they seem to know a lot more what’s going on and, you know, stuff like that. So, we . . . they . . . like if I’m getting worked up [children] will say, are you getting stressed, mum, are you a bit stressed; do you want me to make you a coffee, mum; are you alright, mum? And the . . . yeah, they’re just . . . yeah, they understand me a lot better.

W16P16A1

Parental and child respite was valued and contributed meaningfully to alleviating the pressures families faced:

I think it’s because it takes the pressure off you, and your child. Because your child is having, actually, a break, you’re having a mental break from it. And probably, that helps considerably, for me, anyway. Because it’s just chaos in my brain, like, when I’ve got, I’ve got to think for everybody, apart from [child], because she’s very, she knows what she’s doing anyway. But I’ve got to think for [child], half the time, his memory is getting worse, actually, you might have to repeat a bit.

N29P02A1

Despite recognition of the positive effects Young SMILES had upon their children and, subsequently, at a family level, the focus predominantly addressed gains from a personal perspective. Such outcomes were unintended and were not aligned with the aims of the intervention. The outcomes that were reported varied. The Young SMILES intervention created a normalising, supportive, safe space acting as a platform to discuss experiences and emotions. Many reported how this led to a reduction in the severity of their emotional and mental health symptoms:

It was nice to know that it wasn’t just me feeling sad, depressed, upset and feeling like you strangle your kids at times. Because it . . . there were some times when I was really low, when I thought to myself, right kids, I could strangle you.

W12P12A1

Well, it’s not nice to know that somebody else is suffering the same way like you do, but on the other hand, I was pleased that I wasn’t the only one.

N29P01A2

Yeah, well it was kind of like a relief, it was kind of like a weight had been lifted off my shoulders because whenever I’ve been in hospital in the past we’ve always told the kids, oh mum’s having her meds changed, and, mum’s having some therapy with the doctors, or, she . . . but we’ve never gone into why and what and, you know, all that . . . And so, it was kind of like a bit of a relief for the kids to be learning about it.

W16P16A1

It has helped, it’s got me out of a bit of a black hole, it’s got me out of the house and just pretty much trying to do things that are not necessarily, not that I’ve not wanted to do them, it’s just that I’ve not had the kick up the arse that I’ve needed.

W17P17A1

Being around similar others resulted in the reappraisal of their own life circumstances and experiences, resulting in a reduction of self-criticism, negative mood, and feelings of guilt, isolation and failure:

I felt quite lucky and I’d sometimes walk into the group feeling really down and really sad and really alone and really isolated and then I’d look at the group and think, hang on, yes, I’m like this but my life is really not that bad, even though I’ve lost all these people and I’ve been through the mill, I just don’t tend to feel sorry for myself as much . . . it’s good to know that people are in the same boat as you and it’s good to know that they criticise yourself as a parent and feel guilty because you can’t do things that other parents do . . . It’s made me feel less guilty and there’s a bit more discipline put in place, to be honest with you.

N17P01A1

That was comforting to know that other people were . . . and listening to how they spoke about their children and how their children behave at home, gave me some comfort that I’m not the only one who experiences difficulties and there were other single parents as well, which was good as well to know that you’re not alone.

W01P01A1

I would say, because it gives you all a mental break. And it makes you realise you’re not failing as a parent . . . Yes, I thought I was the only person going through this, and I do get a bit paranoid when I go out. I think people are looking at me and seeing.

N29P01A2

Recognition of outcomes extended beyond those achieved personally to those gained by other members of the group:

It was just nice being sat with other people like that, you know, in the . . . We had the support there as well, because [Young SMILES facilitator] used to say, if you’ve ever got any problems, just ring me and things like that, if you’re feeling down. It was just nice to have that in the group. We used to like recap, before we started the work for that day, what we’d all been doing in the week and how we’d been feeling. It was strange for the first week, up until like the last week, everyone say, oh I’ve been a bit down and then it was like, by the last weekend, we were saying, oh I’m feeling a lot better.

W12P12A1

Collegiality among parent group members was observable. Sharing information and advice in a group setting had noticeable benefits on a personal level and had a considerable impact upon the ability to form positive relationships with others, something parents identified as being very difficult in day-to-day life:

Just like people giving ideas about how to . . . when you were feeling a bit down and you talked to someone and . . . things like that. It’s just . . . like advise some of the people and it felt great, without someone actually saying, you’ve got to do this. It . . . well as I say, it felt like advice, it was just . . . useful information for me to take in.

W12P12A1

I really don’t know. I just say it’s . . . I think a problem shared is a problem halved and I think with them telling me their stories as well as me sharing mine own and, you know, stuff like that, I think it’s a lot easier than going in and just, you know, like telling the psychiatrist what’s been going on and what’s been happening . . . Yeah, I’m friends with them on Facebook [Facebook, Inc., Menlo Park, CA, USA] now, so I’m going to keep in contact and, you know, maybe meet up one day, or something, in town for a coffee . . . It’s really, really good. I’m made up, you know, because, like I say, me and the girls got really close, you know, and sharing our stories, and stuff like that, with each other and our personal experiences, and stuff like that.

W16P16A1

You get to know the like friendships and things, which I don’t really do easily, so . . . yeah, I’d say, I’d advise other people to do it.

W11P11A1

Some narratives differed where negative perspectives regarding outcomes were a major factor. Affiliated with the primary focus of the intervention being on improving the QoL of their children, session work was perceived as being ‘sugar-coated’ with lack of focus on developing an understanding of their children’s experiences:

That’s what it’s about, it’s about raising awareness of the impact that mental health is having on your children. I don’t think I’ve learnt anything. What was discussed with the other parents, I don’t think they would have learnt anything, because it was discussed as a group and they never said, this is how it affects them. I feel like the parents are put a bit more first, than the children. I feel like they were putting our feelings before the kids and I think they were scared of upsetting us, at what the children had mentioned about mental health. I think it should have been a bit more . . . I don’t know whether [my child] did mention anything, or whether she didn’t. But, I know I have bad days and I know it does affect the kids, not in a bad way, but I know that [my child] knows when I’ve got no energy and I just want to chill. But, I don’t know how that affects [my child] and that was what I wanted out of it.

W07P07A1

I thought it [attendance] was to see the mental health through my child’s eyes, I didn’t think I was there to gain self-confidence myself.

W01P01A1

Self-efficacy

Prior to attending Young SMILES, feelings of apprehension were prevalent. Via retrospective evaluation, for most carers, their confidence grew and initial beliefs about their ability to participate were overcome. The non-judgemental approach of facilitators and other group members was welcomed and the atmosphere was compared positively with previous support experienced, enhancing people’s ability to participate:

She said, just try it, [child]. I’m glad I did now, I’m glad that I just overcome that little bit of fear, because if I hadn’t, I would have just been, probably still moaning and crying and . . . but it has, it boosted my confidence a lot. That’s only been like over 5 weeks.

W12P12A1

We all said we all felt a bit apprehensive at first, but once we’d all met it was brilliant. So, I just loved it, being in that group, after that . . . I just loved it. I just loved being in the group and be able to talk to people. I was actually looking forward to my next week . . . not to be judged and just to be in a nice group and feel relaxed and . . . it was just like being sat at home . . . It felt like it . . . I used to love Thursday mornings, waiting for the minibus. It’s stupid. I used to get excited Wednesday night, oh Young SMILES tomorrow!

W12P12A1

Because they weren’t being judgemental or anything at all, they were listening to everybody’s opinions and everybody’s comments and there was no judgemental feedback or any comments back, why they were condemning you, whether what you said was good or bad, there was no, kind of, it was lovely, there was no animosity or no bad feeling at all, there.

N17P01A1

And the people that run the group, the women, the ones who were there, I spoke better with them than I have done with my husband and my psychologist, my psychiatrist. And so, I felt that that was really beneficial to me because, you know, it wasn’t . . . they didn’t make a big deal out of mental health. It wasn’t like an explosion. It . . . you know, it was just a subtle and dead . . . the way they did it was really heart-warming kind of thing and made you feel normal . . . You know, they weren’t patronising or they weren’t . . . you know, they weren’t judgemental, or anything like that. They were just lovely women, and men. There was a man there as well and they were all lovely. And as soon as I’d seen that they were lovely with the kids and the way they were with the kids, they were dead gentle and dead encouraging and, you know . . . and stuff like that. So, I felt safe around them, so I carried on with the sessions.

W16P16A1

Although parents considered themselves as on a ‘level playing field’ with others, the distinctive role of the facilitator stood out as a valuable part of enhancing their participation:

There was a lady called [Young SMILES facilitator]. She was lovely. She was like a mother to you and she made you feel really relaxed and really comfortable and she got everything that you needed, she did everything for you, you know, and she was . . . nothing was too much for her and she ran it really well. She . . . you know, she was a lovely . . . really, really nice person. They were all really nice people and there were no issues with any of them.

W16P16A1

Drawing on the perceived strengths of other parents in the group, such as braveness, overcoming/addressing adversities and vulnerabilities acted as a catalyst for their participation and continued attendance. The environment free of hierarchies or ascribed group roles further enhanced parental ability to identify themselves as a significant member of the group and to approach others embracing the development of a ‘new family’:

They are still parent, they are still coming in group, they are still laughing. So, one woman was laughing a lot with mental health. She’s quite middle age, like she’s kind of aunty, but when I was observing her and I learn that she’s brave . . . they discuss how they act, what is their strategy, how they use their family, friends when they’re feeling now and they say, yes, we need share with some friend who are understand and when we feeling horrible they help and support somebody at least here for us.

N18P01A1

Just because they were sharing their same experiences as me and I could see their vulnerability and it just made me feel relaxed and . . . yeah, just relaxed, I mean comfortable to talk to them, and stuff like that . . . you know, open my heart to them and they were all experiencing the same thing as me and they knew exactly where I was coming from and they were giving me advice, they give me love, they give me sympathy, they give me encouragement . . . give me everything that I needed . . . that made me feel, you know, touched . . . there were a couple of other ladies there who were . . . wouldn’t speak much and they were quite withdrawn . . . and I suppose I was the same, but as soon as we started talking and the group opened up more and, you know, we started telling our stories, and stuff like that, and we just became like a little group, little unit.

W16P16A1

Development of and participation in a collegial group was enhanced by the small group size, allowing everyone to participate:

We were kind of really lucky in a way because we did have a small group, so it did work really well in that sort of aspect. That sometimes people get scared by big groups so it could be very intimidating sometimes, but there was possibly four families that were there every, like every week. And obviously when the parent side of it kicked in, everyone was chipping in so there was nobody that was like . . . felt like they couldn’t speak out. So it seemed to work really well. And obviously you got a spin on everybody else’s, not life, but the way they deal with things, the way they explain things. And obviously everyone disagrees and agrees with some things.

N33P01A1

There was only four of us . . . It was only a small group. I don’t know how I’d cope in a bigger group, but that was like a start for me.

W12P12A1

Autonomy within the group was valued and respected, as it allowed parents to speak about what they had experienced when they wanted to without feeling that they were wasting valuable time and reduced the anxieties of those who wanted to participate minimally. Confidence to speak up was facilitated by the group environment, which allowed parents to open up about their experiences without fear of negative consequences. This subsequently led to altered beliefs about their self-worth and abilities to draw on their own experiences to help others:

I mean I know doctors, GPs, they’re all trained for all this, but it’s sometimes . . . talking to your GP, it’s not the same because you can tell they’re busy and they’re trying to get . . . they’re rushing you. But in this group, it wasn’t like that. If you wanted to talk, just talk and . . . but it was really useful and helpful and it has, it’s . . . I’d write it across the sky, I loved it.’

W12P12A1

Even if you put . . . it’s like I thought I’d asked a stupid question . . . I can’t remember what it was . . . one of the other girls went, I was thinking that but I thought . . . because I said, I think it’s a really stupid question and like [Young SMILES facilitator]’s like, no, no. One of the other girls pipes up, she went, I was going to say that but I felt stupid saying it. I said, yes, I did, but it was one of those things that I needed to get off my chest. I thought, is it going to sound like a stupid question or not. Like, I can’t even remember what it was I asked, but I must have sat there for about twenty minutes tapping my fingers, shall I say . . . and I thought, go on, bite the bullet, just say it, no one . . . laughed, laughed with them. Not laughing at you, laughing with you. It was . . . no it . . . I just felt good, talking to other people.

W12P12A1

[Young SMILES facilitators] seemed very, very pleased that I was actually coming up with a lot of ideas, so they could spur the rest of the group . . . Being recognised as a human being, I suppose. And kind of like, having good ideas, and being able to help others.

N29P02A1

Positive experiences and feeling part of a reciprocal group, however, were not present in all narratives. Disappointment by lack of meaningful conversations about personal experiences left some parents feeling isolated, like ‘a stranger at a bus stop’ (N29P01A1), whereas others felt frustration with their experience of being in a group with parents who did not contribute:

Yeah, because there’s no . . . within a group sort of situation you would expect to know a bit more about each other. Like somebody, like a chair[person] or a facilitator, or whatever you want to call it, to encourage those . . . the relationships to kind of form.

N29P01A1

I was one that spoke more. The others were quite reserved, I was quite open about situations and certain scenarios that I’d dealt with in the past and that. A lot of them didn’t speak, but I . . . I’m quite open anyway, I will tell you what . . . anything, so . . . I don’t know whether that would be beneficial to others, but it was for me . . . I’d say something and [Young SMILES facilitator] would say, do you find that? They’d just be like, no or yes and it was too quiet. Two of them were just like, no and the other one would be like, yes, but then would explain something. But, no one really spoke anything else, half of it was mainly me.

W07P07A1

Intervention coherence

There was a general sense of uncertainty about what participation for CYP and their parents would involve. Drawing on knowledge and awareness of other support group approaches and comparing with school experiences contributed to initial expectations. Some narratives highlighted an inability to distinguish between perceptions of participation in the trial procedures and intervention sessions and activities, leading to a negative outlook on participating:

I didn’t really have that much of an idea of what it would be like. I thought it would just generally be about like, I thought it would kind of be like a group counselling session and I haven’t done that before.

N07Y01A2

I thought it would be like there would be a lot of little babies there, and like just little kids running around . . . because I went to Little Stars [children’s centre] when I was young and there were a lot of babies there, so I thought it would be like that.

W16Y20A1

I didn’t actually feel like it was going to be good like with all the snacks and all the fun stuff. I thought it was just going to be filling forms and in doing work.

N17Y01A1

Provision of information from referrers prior to attending reduced preconceived negative perceptions of attending and expected outcomes; however, this failed to fully alleviate the concerns of some:

I knew that it was something to help children like stop what they . . . stop their worries about their parents and things. And it could actually help them if they are really worried, but I also thought it would be scary because it’s a bit . . . especially learning new things, how to do it and stuff and meeting new people, but it’s sometimes a bit worrying for me.

N33Y01A1

Recognition of the aim to improve mental health literacy, provide respite and identify support mechanisms outside Young SMILES was aligned with perceived needs:

Well, now I know more ideas of how to help my parents or get rid of some of my worries . . . basically like if I feel sad about something I can just write it down on a piece of paper or in my notepad.

N29Y01A1

Well because it teaches you and it’s a bit of fun because you have a break where you can talk or laugh.

W17Y22A1

I thought I might have like been able to learn about stuff and why my mam does stuff she does.

N29Y01A2

Expectations were at a discord however for some, with particular reference to the extent to which parental mental health issues and the impact that they have on children were discussed:

I was expecting to be talking about mental health and airing and how it might affect them and then how it might affect me and everybody else there, so maybe talk about things . . . It surprised me [that it wasn’t discussed] because I thought that was what the group was about.

W01Y01A1

The eldest member of one group further highlighted that not only was learning about parental mental illness not addressed satisfactorily, but when it was addressed it was done so at inappropriate times:

But it feels like, OK, everybody’s in the room with the same issue that we’re just not really going to address for a little bit. And then we’ll just jump in; OK, everybody is going to talk about this really personal issue, and it was a bit like, especially if people aren’t that comfortable in groups anyway and if people aren’t comfortable talking, generally it just felt a bit inappropriate.

N07Y01A1

Affective attitude

Enthusiasm about attending the Young SMILES intervention was abundant among children, who were motivated to attend in view of their own personal situations. Views aligned with the prospect of having the opportunity to speak about their parent’s difficulties and to improve their mental health literacy:

I’m always worrying about my mum and what might happen. It makes me like so, so worried about her that I start crying for some reason with how worried I am.

N33Y01A

I know how it feels because my mum can’t sleep and I just want to know what it is called, what her problems are called.

W16Y21A1

Meeting new people during their attendance, providing an environment in which their experiences were normalised and was distinctively different from a school approach, was a fundamental factor contributing to their opinion of the intervention and interest in attending:

It was exciting to talk about something private and if I didn’t want to talk about anything, to anyone else and getting to know new people and learning new things about people that have . . . some people that have mental illness.

N18Y01A1

And like in a way it was like, I know it’s not true, but you know when people are, it’s like all people have got it worse so you shouldn’t feel bad. And that’s not true but it kind of did make us feel like that but then it was like you’re in the same boat. Do you know what I mean, so like everybody’s going through, so that if I just walked past them in the street I would have no clue. Do you know what I mean? It was like everybody’s going through something. And obviously there’s just so many different ways of dealing with it. So the way I deal with things isn’t necessarily a bad way, it’s just how it is.

N07Y01A2

Young SMILES is more fun, school is weird. School is just more education.

W17Y22A1

Narratives, however, also reflected on the barriers and emotional responses to attending. Many were negative and some related specifically to the intervention content and delivery mechanisms. Others highlighted a tension between parental needs and children’s desire to attend and vice versa:

Just sometimes I find it hard to make new friends and stuff.

N29Y01A1

A little bit worried, a little bit grumpy, and a little bit . . . and I thought it was going to be very, very, very, very, very quiet . . . but then my mum said we’ll have to go on Tuesday.

N17Y01A1

Well, I don’t know. It was just a bit awkward for me but again, as I said, like I understood that that’s not her thing and that’s fine. If I felt pressured, like if I felt uncomfortable going and I was forced to go I wouldn’t like it, so it’s totally understandable. But it was just, obviously whenever I came in like by myself it really was like, you know, like looked like sympathetic and I was kind of like, do you know what I mean? . . . I think it would have been a lot more beneficial if my mum did come because she could even, even if she just reflected, obviously I’m not totally sure what they did in the parent groups but if she even reflected on that and I didn’t reflect from that there would have been, she could have applied what she learned in the household instead of me just, one-sided, do you know what I mean?

N07Y01A2

Burden

Attendance at the Young SMILES intervention sessions was affected by accessibility issues. Getting to and from the venue was an important aspect of children’s experiences. Taxis arranged on behalf of families were viewed negatively and directly affected attendance, while venue accessibility for parents caused worry for children. Some took on the responsibility of ensuring that their parent successfully navigated obstacles, whereas other narratives described the negative impact of their parents’ experience:

They’re [taxis] just unpredictable because sometimes they took like half an hour to turn up . . . just made me like not want to go as much.

N29Y01A1

I said, do you have an elevator but they said no . . . So, I was staying behind mum in case she fell and she’d land on me.

W16Y20A1

I felt sorry for my mum because, like, when we were walking upstairs, it was hard for her, and like she had to put one foot on one step and then her foot on the same one, and then keep doing that, and she was, like, in the middle and there were like two parents behind her. And it sort of made me feel sorry for her.

W16Y21A1

Alienation was also apparent when accommodating learning styles of younger group members, which came at the cost of intellectually challenging older attendees:

Because you have to work along with other people and then some people get like a higher perspective of what mental health is and then the other people don’t really understand it. So then it kind of makes it . . . I think the people who didn’t really understand mental health should go out on a one-to-one, but people who they can understand it stay, yeah.

W01Y01A1

Ethicality

Trust played a vital role in children’s acceptability of the intervention. The Young SMILES model enhanced opportunities to meet people and develop trusting relationships. Being surrounded by other children with similar experiences of adversity accelerated the ability to trust. Underpinning their ability to trust was individuals’ ability to respect the confidential nature of group discussions:

‘Cause your like you’ve met them before the group and it . . . like, and then you knew them . . . ‘cause, like, you knew, like, when you went in they were, like, you knew them and you could trust them.

W01Y02A1

Well, some of the people in my class don’t know what I mean by those problems and don’t understand it but in Young SMILES most of them do and they experience it themselves.

N29Y01A1

Because it’s like a group and because I got to know the group and I knew that it was an own thing, a personal thing, you can talk, and I knew that it wasn’t . . . it’s not going to go out wide, loads of people are not going to know and that’s when I knew I could talk.

N18Y02A1

The intervention approach was unique for many, in comparison with previous support. Having the opportunity to spend time with parents was valued and regarded as significant in terms of outcome. It was notable, however, that opportunities to be more autonomous and to experience respite in an environment absent of parental mental illness contributed to positive experiences:

Because you get to spend time with them and I don’t really do that.

W11Y15A1

Sort of better because you won’t always be hugging your mum and stuff like that, and like you won’t always be just staying with your parents, you just feel like playing with other people.

W16Y20A1

It was kind of good because mum wouldn’t be there and she wouldn’t be seeing the stuff that we said. Not saying that in a bad way but like, she would just go ‘don’t say that’.

W16Y21A1

The informal, relaxing environment was essential. Facilitators were vital driving forces in ensuring this. Children responded positively to the laidback, outgoing style they displayed, comparing it positively with previous encounters with professionals, and describing it as meeting needs and expectations to a greater extent:

Yeah because they’re not strict and they are fun, they’re not like a party pooper . . . because they’re like fun and they’re helpful when you need it.

W07Y10A1

She was funny . . . and like making the atmosphere happy . . . with all her funny jokes.

W01Y02A1

We do learning if we ask someone in Young SMILES. If we ask the doctor, we don’t do it, they don’t show us and if we ask a teacher, they won’t show us. So, it’s different to Young SMILES because Young SMILES will show us but a teacher and a doctor or a nurse, will tell us but Young SMILES will show us . . . Like they would draw it show us it on a picture or something . . . It was better seeing it because you could understand more but if you hear it, you won’t understand it more.

W12Y17A1

They would explain what to do, they would give us some information, they would let us draw, they would let us go out and have some fresh air and I just think they were a really big help . . . They helped with my mum’s anger, they helped with me learn about more stuff, and helping other kids and they were caring for us.

W16Y21A1

Having fun and making new friends was a key meaningful element of the intervention. Children reported that the activities they took part in enhanced opportunities to make new friends, developing relationships during the process of sharing experiences, and contributed to the acceptability of the intervention. At times, this was irrespective of their beliefs about the benefits gained:

It says Young SMILES and it sounded fun like it would make you smile and it did.

W17Y23A1

The best kind of group that helped me that I’ve ever been to. It was fun, I didn’t dislike anything. The thing that I loved the most was all the different kinds of food that helped me try new things.

N33Y01A1

I enjoyed all the activities we did and making new friends . . . It was good because everyone knew each other and we was getting along really nicely.

W01Y02A1

It was just a case of going there and making friends with the people who were there, things like that . . . Probably not [did not gain anything], but at the same time it was good.

W01Y01A1

Opportunity costs

Attending Young SMILES raised some concerns among CYP. Participation in a group came at the cost of their sense of security in an emotional sense, causing nervousness due to being in a group situation, and in a practical sense because of the perceived consequences of disclosing their own and their parent’s personal experiences:

I don’t really like being in crowds with loads of people. It’s fine if I’m with five the most and the minimum of being by myself, don’t really like being by myself but I hate being in the crowd worse.

N33Y01A1

I am afraid that they might tell everyone and I am not used to new people.

W16Y20A1

I didn’t like it because I don’t like talking about my mum’s disabilities because it feels like I’ll have to and everyone will be talking about it, and they might not like us anymore . . . It felt like if I told them then they would chat to their mum and then they might chat with a different person and then that person might chat with someone else, then that other person they’ve told might tell like a social worker.

N17Y01A1

Some saw the Young SMILES intervention as a missed opportunity to spend quality time with their parents as it is something generally lacking in their family experiences:

Because you get to spend time with them and I don’t really do that.

W11Y15A1

Narratives described the factors influencing children’s attendance that they perceived as beyond their control, such as exacerbation of parental mental illness and feeling responsible for attending to maintain group numbers despite their needs not being met:

I was like, well if I go, my mum won’t know where I am, if I stay my mum knows where I am, and I don’t want to scare my mum.

W17Y22A1

It was like I’m not getting anything from this. It was just like, it just felt tedious at a lot of points and by the end of it I really didn’t want to go but I was like I feel bad because obviously the numbers and I’d said that I would go and, you know, I wanted to give it a chance.

N07Y01A2

Perceived effectiveness

Aligned with one of the core aims of the Young SMILES intervention, CYP reported improvements in mental health literacy. Developing a wider understanding of how mental health affects individuals enhanced their comprehension of how to support and respond to parental needs. Gaining insight into the manifestation and prevalence of parental mental illness to a certain extent normalised experiences:

It’s helped me out with mental health and it’s helped me out to know my mum better, like what’s happening . . . Because they told us, what it means, and my mum has got it and lots of different people and it says, if somebody out of your family has got mental health, that people in the family will help the person with mental health.

W17Y22A1

I didn’t think that before but I think I did take a lot away from that because it was kind of like, like everybody’s got something going on, whether it is caring for a parent or not, everybody’s got something going on and it’s like, you’re doing fine.

N07Y01A2

More significantly, as a direct result of improved mental health literacy, improvements in family cohesion were reported. Relationships with parents were perceived to have benefited from more understanding of their experiences, which saw a shift in their behaviour as a result:

I just felt a bit better because, like I said, I can understand my mum and dad’s illnesses and what they can and can’t do.

N29Y01A1

I have a better understanding of how my mum feels . . . [which has made their relationship] a lot better because we’re getting along a lot better now . . . We’re not arguing anymore.

W01Y02A1

So I don’t get into much arguments anymore with my dad because I’m doing more activities with him than I used to instead of getting arguments. I do get into arguments but not like I used to, so it wasn’t big ones . . . because we used to be dead mean to our mum and like we used to never help her, but now we do.

W11Y15A1

Developing knowledge and skills around how to support parents adversely affected by their mental illness was proclaimed important, and had a positive impact on their and their parent’s well-being; some reported a shift in parental attitudes:

Well, now I know more ideas of how to help my parents or get rid of some of my worries . . . basically like if I feel sad about something I can just write it down on a piece of paper or in my notepad.

N29Y01A1

She could trust me before, but not a lot, but now she trusts me a lot . . . Because me and my sister usually never play with each other, but now we do.

W16Y20A1

Like before when I said it’s helped with my behaviour, and I think it’s helped my mum as well because she’s not as stressed anymore. I’m not saying that she was like really stressed, but like her stress when . . . like when I’m stressed, and her having to deal with [child’s brother] as well. I think it’s helped with that so that she’s not as stressed because I’m not as stressed.

W07Y10A1

However, lack of engagement from parents corresponded with the development of negatively perceived outcomes and detrimental effects on child–parent relationships:

Obviously it did create that kind of like shift between me and my mum but I think that wasn’t, like there wasn’t anything the group could have done about that because that was just how it was. My mum didn’t want to go, OK, you know, that’s just what it is . . . I just think it was like, I felt there was an issue anyway although I didn’t realise it and I was just like, oh, in attitude and I was like, OK, that’s, that’s the thing. Do you know what I mean? Like I said, it just highlighted that that was an issue.

N07Y01A2

Family relationships aside, the development of new social networks was a key contributor to positive experiences of attending. The opportunity to engage with others (peers and facilitators) and make friends was an outcome not attained through other supportive mechanisms experienced. Networks provided an environment in which support and advice could be sought:

Well, I guess because I could see my friends from Young SMILES and I can’t really see my friends from Young SMILES when we go somewhere else as a family. So that seems what was different [from other services] . . . I would just say if I had any worries about it. I would just ask one of the adults there or one of my friends there and I would ask if they had any ideas and they would just tell me the idea if they had and that was it.

N29Y01A1

Strong bonds and friendships between CYP were formed; however, because of the time-limited nature of the intervention, many of these friendships were regarded as similarly time-bound:

This is what I got from [other child in group], but it’s like my half says best friends, her half says best friends . . . because we are best friends. If we ever meet again, she’ll be wearing her necklace and I should be allowed to wear my necklace, and then we’d just put it together and then we would know each other again. We’d know each other by seeing this necklace.

N33Y01A1

I [went to Young SMILES because] I wanted to make new friends . . . but like I’m never going to see them again and that’s sad.

W17Y22A1

Older participants were least enthused about the intervention, maintaining that little was gained throughout:

A bit like boring, a little because it didn’t really feel like we were doing much like for the amount of time we were there.

N29Y01A2

Self-efficacy

The Young SMILES sessions were regarded as an enabling environment. Despite some initial concerns about participating in a group, beliefs and attitudes changed relatively swiftly. Initial fears were alleviated by reflecting on meeting children in similar circumstances. The peer group environment, compared with previous one-to-one support mechanisms and day-to-day interactions with peers, helped to reduce isolation and enhance their perceived ability to participate:

Good [experience] because you all got supported by the other teachers and you all got supported by the teachers and you got supported by friends, got supported by everyone there.

W12Y16A1

Well, basically, like I just asked them how they figure out their problems and they tell me and I just tell them how I do it.

N29Y01A1

Mostly because some of them experience the same problems with their family lives so they understood . . . Well, basically just to know that they understand all my problems and I could talk about ways how they solved it so I could, kind of, well, just do the same.

N29Y01A1

Like if you were like just one person, like the facilitator and just you, you’d just feel alone . . . a bit more comfortable where there’s other people.

N29Y01A2

Some of the people in my class don’t know what I mean by those problems and don’t understand it but in Young SMILES most of them do and they experience it themselves . . . I just thought, nice to know that I can be with the children who experience the same problems as I do and I know that they can help me like with that and that the adults can too.

N17Y01A1

The Young SMILES sessions offered a safe environment devoid of perceived negative consequences. Witnessing others speak about their experiences of their parent’s mental illness was enabling, reducing feelings of being judged. The issue of anonymity beyond the confines of the group was discussed:

Because, like, everyone else it talking you can, like, understand more and you know that you’re not going to be judged . . . because, like everyone else is doing the same thing.

W01Y02A1

I wasn’t scared to say it because it’s like you’re not going to see them for a long time . . . So, like, if you go to like WWE [World Wrestling Entertainment] and stuff like that, and start shouting, you don’t need to be scared because you’re only going to be there once and you’re not . . . It’s almost 99.9% that you’re not going to see them again.

W16Y21A1

Despite their membership of a group, facilitators’ abilities and efforts in adapting to individual circumstances were key to the acceptability of the intervention and continued participation. Providing individual support when required was valued:

Well if someone was ill, they took them out straightaway, so they didn’t get embarrassed or anything, they took them out straightaway and then . . . yes, they took her out, so she wouldn’t be embarrassed.

W07Y10A1

Because I was worried that I wouldn’t know anyone’s name on the last day, apart from [Young SMILES facilitator and trial researcher] but luckily she did a name game. Every week, because I’m always, always worried about when I go and meet new people, I’m always, always worried about getting names wrong, so that’s why every time I go into a new group, they do a name game for me, so it’s easy for me to remember names.

N33Y01A1

Coherence: understanding and making sense of the Young SMILES intervention

The implementation of new interventions in services relies on those involved in their delivery developing a common understanding about their aims and values. Practitioners working across third-sector and NHS environments were consistent in positioning Young SMILES as a much needed solution to a national service gap, and as a meaningful, localised activity with potential to positively influence participant outcomes:

There are obviously a lot of families where mental health is a significant concern where it impacts on parenting, really, and it therefore impacts on children, so I think we felt it was a very valuable service. I don’t think we felt it wasn’t valuable. I think we felt it was valuable.

R8, Voluntary organisation

The Young SMILES intervention was seen as distinct from other services. Much of its value was attributed to its underlying philosophy advocating child-centred support and increased service accessibility for a broader population. Focus group participants repeatedly acknowledged the ‘hidden’ status of CAPRI and displayed a shared set of values around the moral and social imperative to ensure that support was available for subclinical, as well as clinical, populations:

I used to work in CYPS [children and young people services], child and adolescent mental health, you know, so children that had a reasonably significant mental health difficulty could get referred to a service and get a service, but maybe children that had parental mental health, but maybe were or weren’t being affected by that, there was not necessarily an identified service. So that’s what I mean about being missed.

R5, NHS-Voluntary

Additional coherence was evident in the way that the Young SMILES intervention aligned well with new care pathways that were being envisaged locally and in the way that its timely introduction supported the type of organisational and workforce development necessary for these care pathways to emerge:

Within the trust, there had been some work going on about how we identify young carers and then link young carers up with an appropriate service. But actually, we started to ask questions about, well, what do people need and how effective are the interventions that people experience . . . we heard about Young SMILES and it seemed like such a good opportunity to do something that I think ethically we felt we needed to be thinking about as a family therapy team.

R9, NHS-Voluntary

So that’s what got me excited both about Young SMILES but also the potential for a co-delivered project with Barnardo’s, I think, because Barnardo’s were telling us is that the children want more to do with adult mental health workers and we were saying, well, we want more to do with the children’s workers.

R9, NHS-Voluntary

In aligning with these local aspirations, the Young SMILES intervention navigated a unique path. Simultaneously, the intervention was upheld as something meaningful and distinct from current service provision, yet something that also drew on, and benefited from, existing skills and care philosophies:

I think that’s the kind of work that we try to do in our one-to-one sessions with the children and the parents. And we’ve not done . . . we’ve done sibling groups but it wasn’t just mental health, because we work with physical health and drug and alcohol addiction as well, but only one to one because it’s such a delicate area to go in. And you are there as a support worker, people see you as an authority, so what gives you the right to talk to people about these delicate areas of their life, or even give advice, maybe you have got an opinion but they haven’t asked for your advice. But to do it like in a group setting and peer support, and people learn from each other, it’s a lot more client-friendly, I think.

R6, NHS-Voluntary

I think that’s quite typical, isn’t it, of the way that we work already, because we have run coffee mornings, we have done other groups . . . And we know, we’ve already built up relationships with those parents before inviting them along to things. And then we support them to think about coming and sometimes give them a lift. So that is the way that we would generally work to get familiar with them.

R3, Voluntary organisation

Cognitive participation: work needed for a new community of practice

Successful implementation of any new intervention requires facilitators to foster commitment and buy-in from intervention participants and from their colleagues and peers. NPT asserts that, when a new set of practices is initiated, a core problem is often whether or not key participants are working to drive them forward. Intervention facilitators may ultimately need to organise or reorganise themselves and others to contribute collectively to the work involved in the new practices.

In the context of the Young SMILES feasibility trial, considerable interprofessional work was necessary first to identify suitable families for the intervention and then to guide them successfully through the trial referral processes. A key concern for facilitators was the inherent difficulty of identifying the target population and the potential impact of this on intervention reach. Success was perceived to rely heavily on service context and on the working processes already available (or not) at local sites:

I think that services that have been set up to think of the needs of children, like Barnardo’s, were able to identify the families relatively easily, that’s my impression, you might have something different. But actually, in an adult mental health context, I think a lot of it was about working with potential referrers to say why this is important and that it wasn’t necessarily those families who were notably struggling or where there’s difficult relational issues, that actually . . . well, we know there’s such a big wider population of need, and that unless people are taught to look for it, they don’t necessarily see it.

R9, NHS-Voluntary

One of the things that actually struck me, just the last thing I’ll say is, it was interesting the number of people who we identified on the caseload who were already known to you, which made me think, well, is that something about people are thinking about the kids, so they’re already thinking we’re a bit worried about this, that there needs to be something in place, or have they got families who are actively seeking support and intervention. We did not capture the people who we know aren’t accessing this anyway.

R9, NHS-Voluntary

Recruiting families into the feasibility trial of the Young SMILES intervention was acknowledged to be challenging. Although a key difficulty was the need to identify and reach out to families falling within intervention scope proactively, facilitators also recognised that research trial procedures had negatively affected participant enrolment. The fact that a notable proportion of families would be allocated to TAU and would not have access to the Young SMILES intervention was a study design feature that concerned those tasked with implementing the intervention and was, at times, perceived to affect families negatively:

The worry was how is that going to be displayed in the family home and what’s the outcome for the child of this is going to be? Because . . . I hope this doesn’t sound patronising . . . but there is a huge amount of work to make this family understand that this is a good thing for the child. And that took so much work. And then for that child to be randomised. And all they heard that the good thing is not going to happen for the child. And it does send the parent in a downward spiral . . . they’d be in tears when I’m telling them they’re not going.

R6, NHS-Voluntary

Every appointment I’ve had since then, every time, every time I try and contact them about having appointments, I’ve had the same thing about she hasn’t got anything, you know, why did this have to happen. And I know why, there’s an absolute . . . there’s a reason that we have to do it like that, but it was very difficult. This person was very unwell, or is very unwell.

R7, NHS-Voluntary

Many recognised conflicts between trial procedures and those implemented in their current services, where the immediacy of families’ needs was considered on an individual basis. Furthermore, facilitators reported not being involved in the composition of groups, which made it difficult to resolve anticipated challenges in group dynamics:

It’s the pressures of trying to do it when it’s being evaluated, so you’ve got to run a group now, so instead of being able to pick and choose who you wanted or saying, well, they’ll be best for the next group or they need to wait 6 months before they’re ready to move on, we’ve had to stick them all together because of the pressures of you’ve got to bring in another group now because we’re stopping it, sort of thing, so that hasn’t helped.

R7, Voluntary organisation

Because you’ve got a limited sort of pick of people and families, you’ve got no choice over the group dynamics, so some of this lot you wouldn’t want in a group ever together. It makes it impossible working, and ideally you’d assess that before and think, well, just separate them out and think . . .

R1, Voluntary organisation

Lack of individual control over intervention set-up and implementation was a key theme for facilitators and highlighted how critical it was to build communal engagement in Young SMILES, so that the process and outcomes of this new practice could be optimised and sustained. Incorporating additional procedures to ensure family engagement and understanding, with particular emphasis on parents, was strongly advocated:

. . . it’s probably something that you consider for the manual I think about engagement and the first stage of the manual, you know. So if we were running a group together, you know, would we go out and meet every family beforehand and individually, and talk about what the group was about and help prepare people to attend.

R1, NHS-Voluntary

One variable that facilitators debated at length was parental readiness for change. Although children engaged well with the Young SMILES intervention, parental engagement varied. Facilitators’ perceptions of parent readiness to change contrasted across the two sites, with those working at the health and social care interface more likely to comment on engagement challenges. Whether the difference observed between the sites was solely a reflection of true differences in group membership or was, in fact, partially influenced by professional experience, role and expectation remained unclear. What was evident was that a combination of cognitive and relational work was required with parents at intervention initiation and that this work was perceived to be the joint responsibility of intervention facilitators and intervention participants:

These parents have really severe mental health issues, most of them that are coming to them, and some of them don’t even go out, they don’t even open their door to people, so it’s been very difficult just to get in to start with some families.

R3, Voluntary organisation

They’re still not ready for group work, some are just not ready, and they’re not ready to deal with and cope with and listen to and discuss the impact on their child, because they’ve got so many issues of their own that’s blocking them from coping with their children’s feelings and emotions and so on . . .

R4, Voluntary organisation

Running a parent group with participants who were not ready to identify and explore their children’s experiences (as opposed to their own) caused some facilitators to question the ethics of this aspect of the intervention design and had a negative influence on their motivation and commitment to this role:

The children all love coming and have been very positive, but of course the parents haven’t been, and we feel like we’ll get to them and they’ll be hearing about the same rubbish, nothing will change for them in their lives, but we’ve shown them that it could be different but it’s not going to be.

R2, Voluntary organisation

Those sessions were near impossible . . . they’re very stuck, you’re constantly bringing them back and they’re just not getting it.

R2, Voluntary organisation

Despite these sentiments, the conceptual and theoretical arguments for including parents in a child-centred intervention were well understood. Clear tensions were evident between the magnitude of work that was required to engage and sustain parental input, and the perceived consequence that this would have for children if it could not be achieved. Parent engagement was considered vital not only to assist with their own understanding of their children’s experiences, but also to ensure that their children felt included in the intervention and experienced maximum socioemotional benefit:

Unless you can change the parent, and it isn’t the child in this, it is the parent. The parent has to own some responsibility, yes, the mental health is there, no denying that, we understand the mental health, but they’ve got to have the capacity to change, if that change doesn’t happen, you’re setting children up to fail.

R8, Voluntary organisation

Just observing from the children’s group, is that a child was on his own, his parents didn’t come with him to the session, and so when all the parents come in to pick them up, this child hadn’t got anyone to pick him up . . . there are things like that, and it’s that feeling of being separate, with this young child that their mum wouldn’t come to the group.

R6, Voluntary organisation

Facilitators in one site suggested that parental engagement with the Young SMILES intervention was naturally enhanced by some of the parents meeting informally before the parent sessions commenced. It was thought that meeting spontaneously while waiting to collect their children from their first sessions allowed parents to build relationships before meeting in the more formal sessions. Parents who had not had this opportunity, or who struggled to relate to their peers, were disadvantaged socially and struggled to integrate into the group. In this sense, relational work instigated by and sustained by the parent participants was upheld as an important ingredient for intervention success:

By the time [we] started the first group and we had a group contract, people knew each other already, they exchanged telephone numbers already. In a way, they did quite a bit of the work that was meant to be done in the first session, they gelled.

R6, NHS-Voluntary

And some parents seemed to get lost through the process once they’d started informally because, you know, it was an unfacilitated process that was happening, or some joined later and then relationships had formed between certain members of the group, so what it would be like to try and join the group that was already formed at that point.

R9, NHS-Voluntary

For others, more explicit solutions were necessary. This included allocating more time to precipitate parent change within the intervention and providing more dedicated opportunities for families to work through their experiences as a unit:

We talked around as well linking in some work and more sessions around changing the women’s beliefs as well, you know, how we would work with them to change their beliefs, the beliefs like I can’t cope, or my life’s over, actually changing those beliefs and getting them to change those beliefs and look at how they need to behave differently and how they need then to give those beliefs to their children, and how they’re going to do that . . . to give the best possible service, I suppose.

R3, Voluntary organisation

I think there must be more active joint activities, like you only have an hour together rather than them going there and the kids down here, I think they need to do things together so that we can see what’s going on in the kids’ heads if they do those activities together . . .

R7, Voluntary organisation

Collective action: delivering the intervention in practice

A central tenet of NPT is that any novel or modified intervention must display interactional workability in order to be taken up and integrated into routine practice. Although facilitators across both sites reported that CYP were engaged with the Young SMILES intervention, there was some recognition that CYP commitment varied depending on the approaches taken. This observation was applicable to both age groups, with facilitators consistently acknowledging that opportunities to engage the group in dynamic activities were more likely to be well received and more likely to engage participants than direct group discussion:

They weren’t verbal about not wanting to talk [laugh] but they just didn’t say anything. So we had silence. So we knew they didn’t want to do the discussion-based things because it was just really awkward and they didn’t . . . they just weren’t willing to share in front of everybody.

R3, NHS-Voluntary

They were a bit like, oh, not this again . . . I think with the little ones, it felt like we really had to keep the serious bits to a minimum, because they just got bored actually, we just lost them. So we were almost bribing them with, we’ll do this bit and then we’ll do something fun. So I think as well, to make it any kind of a worthwhile activity for them, just keep it really short.

R8, Voluntary organisation

It became apparent that, for some CYP, a major barrier to talking was the expectation that their thoughts and feelings would be shared with their parents. Fear of disclosure was closely linked to a reluctance to prioritise their own needs and a reluctance to tell their parents what they had been experiencing as a result of their parent’s mental illness:

There was a feeling of what, you know, their parent might think, put two and two together and knew that it was them that had said that. I think that’s quite a big thing for a little one to carry, isn’t it, and worry about. So, we kept things quite general at times, didn’t we, and really respected what the little ones had said.

R4, NHS-Voluntary

One important discussion point for the Young SMILES facilitators was the recommendation in the intervention manual that groups create an ‘imaginary family’. Although this tool was viewed as a useful mechanism for older children to share experiences in a non-threatening way, facilitators reported that, among younger children, the concept was not always fully understood. Younger children were typically perceived as less ‘self-conscious’ and ‘happy to talk’ directly about their own family; therefore, facilitators were forced to adopt a more flexible and adaptive approach, gauging the value of some intervention tools and exercises depending on how the group attendees responded to their introduction and use:

They used it [the imaginary family] when there was something particularly difficult, like when we were talking about what they would want to say to their parent, they found it a lot easier to think what the imaginary child would want to say, because that just gave them that chance to remove it from themselves. So it was definitely useful in some cases, but other times it did just get ignored and it felt . . . they knew why we were bringing it out, they knew it was to give them that opportunity to not talk about themselves. So I think it felt a bit false maybe.

R3, NHS-Voluntary

It’s just a reflection just because [we] did the younger children. A lot of hard work, trying to get it right. We actually didn’t use the . . . the made-up family just didn’t work with the little ones, they just didn’t get the concept . . . they were just talking about their own families, which I felt was more . . . went more successfully. So there was a lot of adapting.

R8, NHS-Voluntary

Having responsive facilitators with the necessary knowledge and expertise to facilitate child-centred groups was regarded as a vital element of the successful delivery of Young SMILES. Although it was acknowledged that intervention training, in part, fulfilled this objective, facilitators recognised the ‘hard work’ that was subsequently required to deliver the Young SMILES intervention.

For those working in the co-organisation delivery site, working alongside individuals from a different field allowed them to draw upon their differing strengths to fill in gaps in their current knowledge and experience. For NHS facilitators, this involved developing their skills and understanding of how to work with groups of children, whereas for those working in the third-sector organisation the chance to work with someone who was skilled in supporting adults with mental health problems was key. Working within a collaborative model was thought to provide an efficient solution to individual skill gaps and positively added to their ability to fulfil the needs of families attending the Young SMILES sessions:

Certainly, I mean, I couldn’t have done it without [third-sector facilitator], because it’s that expertise and knowing what’s going to work with kids and pitching things. And I really just followed your [their] with that and been able to sort of draw on lots of experience of working with people and knowing what might work, what mightn’t work, you know, that kind of thing. And just having ideas as well, creative ideas, that was great, yeah.

R1, NHS-Voluntary

I felt very reassured co-facilitating with [NHS facilitator] because I knew we had some quite unwell parents in our group, and just knowing that that’s what you do, you know, was very reassuring, yeah.

R2, NHS-Voluntary

Sharing responsibility between facilitators with complementary skill sets built accountability and maintained confidence in Young SMILES, an intervention that by design was relatively structured and manualised. Facilitators recognised the usefulness of the Young SMILES manualised approach in providing structure and coherence within and between sessions, simultaneously acknowledging that such an approach could be challenging when faced with dynamic family circumstances and differing participant needs:

It’s an age-old tension, isn’t it, you know, between how do you have a manual that allows you to do things in a relatively informed way that hopefully is linked to what proves to be helpful and effective, but also has enough room to wriggle. You know, that’s a tension with any manualised approach, isn’t it . . .

R9, NHS-Voluntary

It would be difficult but I can also see the benefit of that [open intervention], you know, I don’t know if it would allow you more flexibility for people to come and go . . . if you did have that flexibility for just people to come in and out when they were feeling well or whatever was doable for them, does that make that more accessible, rather than being very constrained, right, we have to get this done in 6 weeks and just plough through the manual, which I think maybe it felt like that at times. I think time was tight.

R4, NHS-Voluntary

Navigating the different needs and preferences of the group while maintaining intervention fidelity was an ongoing challenge in intervention delivery and required considerable sensitivity and creativity on the part of the facilitators. One facilitator recognised the ‘chaos’ that many children are experiencing in their lives and the importance of allowing time for both children and parents to work through those stressors before re-enforcing the aims of the session:

I think it was . . . chaotic. So they came in with that, you know, on the ceiling and then it was that job of bringing them back down and refocusing it again . . . it’s helpful for the child that they’re sorting that kind of thing out . . . we need to just let them voice that but then bring them back to, you know, [to] what the aim of the session was about. I think that works really well. And they heard it, didn’t they?

R4, NHS-Voluntary

. . . everyone would stick with the theme of the session but we might have to divert a little bit so that session might be, like, OK, what we need to do is go in, yes, look at them, how it felt for them when that happened, then get them to link it to their children, because, you know, obviously if they can’t, if they’re stuck and they can’t make the link, you’re going to have to go back to their stuff, get them to look at how it felt and do an exercise around that and then get them to link it, you know, and stuff like that, and you know, we’ve had to do things like that sometimes to try and shift people on a bit and stuff, so they can benefit from the programme.

R3, Voluntary organisation

Facilitators were clear that the division of labour underpinning the sessions should be weighted towards the group leader, with the onus on them to optimise intervention delivery and effect change. Homework completed by participants between sessions was piloted but was not considered viable. A key barrier was the need for CYP to have access to the necessary resources to complete the homework but, even after this was identified and resources were provided, facilitators felt that, for many children, homework was unfeasible:

They still struggled to bring it [homework] in and a lot of the same, they’ve got enough to do with the homework from school without doing this.

R6, Voluntary organisation

. . . you’ve got to take it into account, haven’t you, I mean, I’m not being funny, these are the sorts of families that won’t be doing the homework at home . . . Because the parents won’t be motivated to sort of sit and support the children with their homework, you know, and again, like I said, that comes down to some of the issues with the parents, doesn’t it, you know, so getting them to do homework for us is pointless, really.

R8, Voluntary organisation

For the parent group, homework was generally considered to be more feasible:

. . . you can sometimes in the adults group give little bits of practical homework . . . we want you to do an activity with your child and then report back to us what you did and how that went, you know, things like that are quite useful in the adult group, but for the kids, I think, you know, we need to knock that one on the head.

R8, Voluntary organisation

Reflexive monitoring: appraising and redefining the intended intervention

Reflecting on the process and outcomes of the Young SMILES intervention, most facilitators commented on the benefits it had for CYP, parents and collective family units. Third-sector representatives who retained close links with their intervention referrers provided feedback that went beyond their own observations. Reported benefits to CYP included increased confidence, concentration and self-esteem:

Some of those children were very good, weren’t they? I always remember we got some very positive feedback about how they’d seen the children’s self-esteem grow and their confidence grow, the children were able to express themselves better and the schools saw some very positive changes in the children, you know?

R8, Voluntary organisation

The schools were saying that the children were concentrating a lot better . . . I think the other thing, I think the schools were saying they were concentrating more, their self-esteem grew and I’m sure they said they felt they’d got a sense that the children were less dissociated . . . obviously we couldn’t measure that . . . remembering it back now as well about parents and schools also saying things like the children were talking more about their feelings, so that had been positive, so the children were actually saying about how they were feeling so that was then having a positive impact on their behaviours, because they were talking more about how they were feeling.

R3, Voluntary organisation

Most benefits appeared to emanate directly from children’s engagement in the group intervention. The effect of parental engagement on CYP appeared more variable. For parents, facilitators felt that the manualised activities were successful, enabling some parents to improve their understanding and insight into their child’s experiences to a ‘significant and remarkable’ extent. For others, the benefits were not so apparent and not as long-lived:

It’s very powerful [sharing information from CYP], and the timing of it is key . . . you knew instantly those that had connected because they went quiet, their body language told you and some of them became a bit tearful . . . I remember one of the parents said I’m parenting how my mum parented me’, and I thought, oh my god, and that was like a light bulb, that’s when we knew she had it, because she actually thought she wasn’t her mum and when she looked and she was able to do the flip, she just was very . . . you could see it in her face . . . And that was kind of . . . and you could tell that when we went to see her at home, it was very different, there was a shift, an evident shift . . .

R4, Voluntary organisation

All the children wrote down the impact on them so their parents would hear from them, and then we got the adults to look at it, and they said it was really hard-hitting. It did stop them in their tracks for about 2 seconds, you know? And then they started making excuses and banging on again, but I do think it is potentially quite powerful, that. They do go, oh, they’re sad, look at that, someone’s sad, whose child is sad? It just dropped, like a realisation, but then there was the cover-up of the feelings and then it’s their fault, they should know what my feelings are like, they should look after me. If that had been a bit longer, then we could have explored that with them, but there’s just not the time.

R4, Voluntary organisation

Time constraints on the Young SMILES intervention were frequently discussed. Reflecting on the time available, facilitators focused on three core aspects of the intervention: (1) time allocated to conduct initial assessments, (2) time dedicated to the intervention itself and (3) time available to optimise communication between the CYP and parent sessions.

Voluntary organisation staff were clear in emphasising the importance of the initial family assessment and in highlighting that the time dedicated to this assessment was less than that available for the assessments that they routinely conducted for other comparable interventions delivered by their organisation. Lack of time in the assessment period was perceived to limit the depth of information that could be shared and to affect relationship quality at a critical time for participant engagement. Much of the practitioners’ concern about assessment of the family appeared to link to parent-focused approaches with which they may have been more familiar:

We would say there needs to be a longer assessment period, so there needs to be a longer assessment period and more opportunity to do a more thorough assessment at the beginning, really, because I think we felt we were having to rush to do those assessments, and that’s not ideal, really, you know? So I think we would feel that that would need looking at, really.

R8, Voluntary organisation

You can’t go in, can you, and say tell us about your childhood experiences, well, that’s fine, move onto the next thing now. Obviously you’ve got to deal with that in a sensitive, responsive way . . . those sorts of issues aren’t quick issues that you can turn around within 1 week, you know? So I think it’s more that, even what we were saying, you know, for us to do a proper job and for us to sort of do this well, we would have appreciated a bit more time, really.

R8, Voluntary organisation

The desire to have more time allocated to assessment indicated a broader preference for a time-rich intervention. A time-limited intervention lasting only 8 weeks was generally viewed as too short, with one facilitator emphasising the potential negative effects that such a short length of time may have on CYP and on the coherence of the intervention for other members of the family:

Yes, and we know especially for the children it goes really quick and then we’re just leaving them, that’s what it feels like, we’re just dropping them and it doesn’t seem fair on them.

R5, Voluntary organisation

And I found that that bit was really rushed, it was all jammed together; and then the end was also rushed. Because we prepared and we told parents, this is a celebration event, but they had to do a really hard piece of work, which is goal-setting. And if it had been me doing that, I would have been sweating, it would not have been a celebration for me to set goals. And it really showed what people thought about this, because they all left, they all left the paperwork with us, they left it behind. And I think that was a clear sign that either we didn’t give enough time or it was too hard a task when they were expecting a celebration of eating and drinking, to think about what do I need to change and how am I going to do that?

R6, NHS-Voluntary

Across both sites, facilitators explicitly focused on the time allocated to the parent sessions, noting that parents started their sessions 3 weeks after their children and that this felt counterintuitive to intervention success:

You see, to me, systemically I think about context, you know, when we work with families rather than an individual, because the system changes and the context of somebody’s life changes over the time . . . So, if you think about a child, you know, if you think about you’re working with the parents, then the context is that they will become more aware of the child’s needs and maybe respond in different ways. That kind of makes me think it might be more important to have the parents group start at the beginning, so that there is more time and opportunity for that to develop, you know.

R5, NHS-Voluntary

Consensus among the facilitators was that additional work with the parents at the outset may have helped to enhance the outcomes of the intervention for children. Ensuring that sufficient time was available to communicate discussions from CYP to parent groups was considered a vital component of a high-quality service and something that had not been fully addressed in the Young SMILES manual or training information:

I think ideally, you know, lots of the families that we have could deal with a programme on their own first, you know, so if they had a parents programme with 8 or 10 weeks first and then we did work with them and their children, we have a children’s group and maybe some joint sessions with the parents and children together as part of the children’s programme, you know, then that will probably be a better service overall, you know . . .

R3, Voluntary organisation

Before every session, we had to spend time knowing where the children’s team is, because the adult group work relies on what is happening . . . and the information we received from the facilitators was absolutely invaluable. Without that I think it would have been really difficult.

R6, NHS-Voluntary

Support to deliver the intervention was at times perceived to be compromised by a failure to validate the resource that was required at a team and an organisational level. Concepts of resource encompassed access to the practical tools necessary to conduct activities, such as art materials, but also extended to staff. Facilitators were mindful that, at times, CYP or parents may need to be individually supported, which represented an additional burden on local systems. Having the capacity to augment or extend the intervention was recognised as fundamental to enhancing service provision, but was acknowledged to be difficult in the context of contemporary health services:

I think if it’s agreed that it’s built into somebody’s sort of job plan, you know, that that’s part of their role for however long that is, yes, otherwise things get squeezed or put to the side.

R5, NHS-Voluntary

Families also need to be supported to access the intervention; without this, many would not have engaged. However, arranging transport was a burden for facilitators across both sites and affected their ability to run the groups effectively:

The first group we kind of went with the taxis. I think I did the first when I look back, you know I would meet at a school, get in a taxi but that kind of worked, and those that lived local were fine. So that wasn’t too bad, believe it or not, and again it was time to free up . . . This one has been a logistic nightmare, but again I also think would they have come if a taxi arrived, probably some of them not. So there’s swings and roundabouts with both, and it has been hard, and kind of had to think about this because we’ve had to cancel some groups because clearly there were not enough that was coming, and all of that, and also we’ve run over the holidays. That in itself, and then the other part about that is we’ve had some of the primary children go to high school.

R2, Voluntary organisation

Facilitators recognised that, despite receiving training and being able to draw on previous experiences and skills, implementation of the Young SMILES intervention faced inherent challenges. Being involved in the development of the intervention in the earlier stage of the feasibility study was viewed as beneficial, but several uncertainties about how it would work in practice remained. Some practitioners reflected that, with hindsight, they were ‘not clear’ about what they were doing and resolving this uncertainty regularly demanded extra preparation time ahead of intervention delivery:

I think the one thing we did realise is you need a lot more time to prepare. We spent . . . we met a good couple of times, took a good couple of hours out I think to look at the manual. And then there was kind of before the group came, we had conversations. And even on the night, we were just sort of talking, actually is this working, maybe we should try something else. So there was quite a lot of that going on.

R1, NHS-Voluntary

I think sometimes it felt like we were just talking a lot rather than doing, so we had tweaked it a little bit, it’s better now than what it was originally, we kept to the model but just changed the activity to make it a little bit more engaging . . . we’ve used some activities that we’ve used before in groups with children which worked really well, but obviously with mental health . . . more arts and crafts.

R4, Voluntary organisation

All facilitators recognised potential adaptations that could be made to the Young SMILES manual and facilitator training programme to ensure success and sustainability. Some felt that the manual was not developed fully, was repetitive at times and did not provide enough information or guidance to be able to deliver the Young SMILES intervention without additional work:

I guess a manual that was more formed from the start, you know, it would have helped me. And it wasn’t really. Maybe that’s part of kind of a pilot study. And I guess connected to that, there was repetition in the manual, so there was maybe . . . yeah, a more finished product. You could have like an appendix after each session or at the end, you know, optional additional exercises for different age groups, something like that . . . pages people could refer to for seeds of ideas.

R5, NHS-Voluntary

When we first talked about this as a manualised model, I was influenced by other manualised training that I’ve had, which has been very much this is what you do within the manual. And for some of the exercises, it was difficult to know exactly what they were and we actually locally ended up arranging . . . we had four extra training, half-day training days where we went through the manual step by step and we experimented, we role-played what we might do . . .

R9, NHS-Voluntary

For those with experience of similar models, explicit permission to introduce new activities or modify activities in situ was recommended. Supervision of less experienced facilitators by more experienced personnel was advocated as one way of preserving intervention fidelity and quality, but this was not operationalised in practice:

I wonder whether reassurance as well, if there’s an activity you know of that fulfils the same purpose but you think you’re more familiar with, you can do it. Because I think I was asked a couple of times, ‘well, I’ve done this activity in this way, can I do it?’. Not that I’m the oracle on things, but I think just having that reassurance for somebody, if you were to pick up and think, have I got to follow it exactly because I don’t know. I mean, as an example, the example of volcano, don’t know how to make a volcano. But if I know how to do this and it does the same purpose, I mean something from . . . I think it would reassure people.

R7, NHS-Voluntary

Because I know there was that all that business about, wasn’t there, at one point, because when it all first started off, all that business about we were meant to be offering some supervision, and then that never happened, I don’t know what happened with it.

R8, Voluntary organisation

Further discussions about delivery in relation to future developments of the intervention focused around whether or not a co-delivered model between the NHS and the third sector would be offered. The value of this approach was, again, emphasised but concerns about governance surrounding such an approach were identified:

It’s one of the complexities of the joint model, you know. If you had a commission to do the whole of the same area as we had [in the trial], I’m guessing we would have moved groups around the areas. Because ultimately, it was staff at the end of the night who were putting potentially unaccompanied minors in taxis, and different organisations have different ideas about the expectations of that. I think there’d have to be quite clear service level agreements in place around that. There is an issue about how you influence commissioners . . . So there’s a lot of work would have to take place’.

R9, NHS-Voluntary

Coherence

Referrers recognised the value of the Young SMILES intervention, reporting that it aligned with the objectives of their organisations. Of particular relevance for referrers was the acknowledgement that there was a lack of services at a local and national level that take into account the impact of parental mental health on CYP. Although there was recognition of parental support and separate support for children experiencing difficulties, Young SMILES was regarded as a novel ‘whole family approach’ with the potential to fill this identified gap in services:

I think most of our families that are in similar schools to us, in similar areas to us, will all say that mental health is one of our big hot spots, so trying to be able to address family support. And you unpick a child’s, you unpick a behaviour of a child, there’s always some sort of mental health problem with a family member that we’re trying to unpick as well . . . if a family are saying that they’re struggling I think it’s and they’ve got mental health or the child has got mental health I think it’s a brilliant scheme to be able to get families in.

R3, Referrer

I can’t believe that you’ve not been inundated . . . it’s what we’ve been looking for, something to support our children who are dealing with highs and lows of parents. It’s what we’ve been looking for. There’s nothing out there.

R1, Referrer

In attending, referrers were hopeful that Young SMILES would positively contribute to children attaining insight into their parents’ experiences and, consequently, have a direct impact on aspects of their QoL:

Yeah, I suppose it would be things like regular school attendance, improved sort of . . . maybe more parents’ motivation, understanding, you know, when medication stopped, things like that, that it does impact on the children.

R2, Referrer

Yeah, I mean I’d hoped that it would achieve sort of changes really and sort of I suppose a bit of a better understanding because I suppose when parents are locked in all their own needs and sort of, you know, some quite serious mental health conditions sometimes the child’s needs can be overlooked in a way, and I suppose it’s hopefully giving them a better appreciation of that. That’s perhaps the hope maybe, and that would have then an impact on things like attendance, getting them ready for school, homework, hopefully, in some way, give them a . . . yeah.

R2, Referrer

Referrers spoke positively about the information packs that had been produced for families. They felt that the information was accessible and conveyed all aspects of the intervention and feasibility trial effectively. However, many referrers recognised that they lacked awareness of some of the research processes that may have influenced how the trial was explained to families, highlighting a tension between the research design and the referral pathway. Some mistook the mechanism by which families were included and randomised, highlighting the fact that some families would not be offered anything:

Really clear [information pack] and I just want to say that it was that clear that the meetings that I had I took the pack into the meeting and some of our parents can’t access long words, lengthy documents, all that kind of thing but it was easy accessible for the parents that struggle with reading, things like that. So I would share it in a meeting with them and they’d be like, oh, yes, yes, this is something I want to do . . . The only thing, I was a bit like, so who’s going to be delivering it? Why are we sending it to Manchester? I was a bit like . . . I don’t get that side of it but do you know what, I’m going to send the referral in anyway . . . Maybe again on my behalf, I didn’t fully understand that so I didn’t get them ready for . . . I thought once the referral had gone in, if you’d got past that stage you were in.

R1, Referrer

We had others that were interested but I think there was some complications with some people getting in and some people not receiving anything . . . It was something to do with being research, wasn’t it? That some families get the service and some don’t to see if works or not.

R5, Non-referrer

Cognitive participation

Referrers demonstrated their commitment to ensuring that family access to the Young SMILES intervention was a smooth time-efficient process. They regarded themselves as responsible for ensuring the successful engagement of families with this process, with some assuming accountability for the resultant outcome(s):

Once a parent has said they’ll do it, I like to try and get it in straight away because then it’s done and dusted really. And it’s not hanging round like, saying, well come in next week and we’ll fill the form in. It’s like it’s getting them here again.

R3, Referrer

Referrers recognised that families generally want support and that Young SMILES could serve as an alternative support mechanism. For some, persuading families to participate in the trial was straightforward. However, it was acknowledged that, in spite of their own commitment, they would have to invest time and effort to ensure the commitment of many of the families they encountered. Overcoming parental barriers to engaging with mental health services led to low expectations of getting families to engage:

It’s not going to be an easy sell ever I think because it’s quite a commitment isn’t it for that family to take on. I think it’s much needed but I think it was one that was, once you sort of got over being able to talk about it, because some parents just want to deal with it in isolation and not bring the children into it because they, they, my children doesn’t know about my mental health.

R3, Referrer

Further difficulties were anticipated when trying to engage families where the parent is not committed to invest in their own recovery. Poor parental engagement was regarded as a generalised problem, but not one that was necessarily restricted to mental health research or interventions:

I just feel like some of the parents who we have contact with, we struggle getting them to attend . . . to take their children to their own health appointments and to even access health appointments for themselves, without them committing to do something that’s a course, just statistically, we tend to have quite poor engagement with parents. They’ll contact . . . we’ll have a good one-to-one and we can have that contact but for them to actually attend things, it’s really hard.

R4, Non-referrer

Referrers acknowledged that non-engagement did not reflect the parent’s lack of interest in supporting their children’s needs; parents had a genuine interest in trying to improve the lives of their children, but were often hampered by the mental health difficulties they were experiencing. It was clear that parent engagement was difficult across numerous services, not just those with a specific family focus. It was thought that parents may have been more persuaded by the value of the Young SMILES intervention if their participation was not required:

I think most parents genuinely want the best for their children and they want the children’s needs met and their emotional needs met. So I think most parents wouldn’t have an issue with the children or young people being referred but the actual commitment of them to have to attend something, I don’t think a lot of them have that ability, due to their poor mental health, if that makes sense? . . . I’d say I tried on three or four occasions about support for the child or young person and the parent seemed keen initially and then as soon as you suggest that it’s something that they might have to attend, they weren’t interested.

R4, Non-referrer

Parents’ apprehension about their problems becoming known to social services conflicted with their desire to participate:

I suppose for . . . the concern is that the parents, because of sometimes lack of engagement and the way that, you know, mental health can be where you can sort of bury your head a bit really, if you like, stop taking your medication, not engage with people in the outside world, and things, that that would . . . could have an impact where they think, well I don’t want to . . . I can see the benefits but I’m not going to do that, you know? . . . they’re the ones that . . . they’re the ones you want to help because they’re the ones whose children aren’t coming in and aren’t doing their homework, and all the things that the impact . . . don’t engage in, other things with school, and, you know? . . . But obviously they’re scared, saying, oh, my children are going to be taken off me, I don’t want that . . . because people don’t quite know how . . . what the response will be to them or them disclosing something about their . . . particular things around self-harm and children being . . . you know, all that kind of stuff is, yeah.

R2, Referrer

Despite their enthusiasm for the Young SMILES intervention and their identification of the gap in current services that the intervention has the potential to fill, at times referrers were apprehensive about promoting involvement in the trial as they were unable to sell the benefits of the intervention in the face of this being an early-phase trial and, therefore, coming before a supportive evidence base. Initial caution about the Young SMILES intervention was apparent. The gap in current knowledge about the Young SMILES intervention had a direct effect on the attitudes of referrers and their anticipated belief that the parents they approached would be happy to participate. Gathering knowledge about the outcomes and experience of families who have been involved in the Young SMILES intervention increased referrers’ optimism about the anticipated engagement of families. Having the opportunity to communicate directly with other families who had participated was regarded as a potentially effective mechanism to legitimise the intervention and ensure commitment from future families:

If I refer young people onto things, I normally have evidence of, it might be something that you don’t engage in, it might be something that you don’t feel of benefit to, but I’ve usually got evidence, or I’ve got some proof that this has worked before and once something is up and running, I am confident, as a practitioner, to recommend and refer that person onto the service.

R4, Non-referrer

Once we’ve got this family through I think it will definitely have a snowball effect and we’ll be able to get through families, more families through. Even more me, you know what I mean as, because I’d have more of a sort of, know what it’s about . . . it’s having knowledge of, you’ve had a family that’s gone through it and then you can sort of really say how the impact of that on that family. It’s good to have one to say, I know a family that have done this project, they’ve got this, this and this out of it and I think it would be a really good one for you. I think that’s a good sell.

R3, Referrer

I think, you know, parents saying to other parents who, because best will in the world those parents will talk to parents with similar needs and they will sort of say, well, we’ve done this project. It was brilliant. We really got this, this and this out of it. Go and have a chat with [member of staff]. That’s how I find a lot of my things come. I get more from parents selling it to other parents than me trying to sell it to other parents.

R3, Referrer

Collective action

Having conceived the Young SMILES intervention as a beneficial addition to the services that already existed, referrers reported the ease of endorsing it in practice for the identification of families to participate. Many reported that their day-to-day roles facilitated the process of engaging with CYP or families whom the trial may benefit. Existing systems to flag concerns about children were easily utilised to refer to the Young SMILES intervention and the identification of suitable families was also enhanced where there was an existing awareness of parental mental illness influencing family life:

We can refer clients quite quickly after they have first engaged with our service . . . they’re normally really happy to let you get on with your job like that. If they come to you asking for help it makes your job of supporting them so much easier.

R5, Non-referrer

We have a system called CPOMS [software application] in school, so it’s a way of writing down. So, all staff have access to that, to write down if the child’s got a concern, if you’re concerned and that gets flagged to myself and the head, who then will look at ways of what we need to do next . . . So, it might be the PANTS programme [NSPCC framework], the programme that we might need to do with the child and the best people to do that was the class teacher, or it might be a referral to CAMHS, and we’re thinking well if we stick a CAMHS referral in we might as well stick a Young SMILES one. You know to me it’s that sort of look at things really.

R2, Referrer

Referrers all identified that success in identifying suitable families and their subsequent engagement with the trial relied on them having established relationships with families, particularly with parents. Such families were open to discussions about their mental health, which removed some of the concerns that some parents had about opening up about difficulties they are experiencing:

Well, because of the relationship I have with the families that go to our school, I mean, the thing is I’m . . . Because of the relationship I have with them I’m outside morning and night. They tell me what they’ve had for breakfast, that relationship is, you know, how many lagers they had last night. Even if they’re going to get in trouble with me they tell me. So by me saying to them, look, there’s this course, it’s about mental health, they wouldn’t think, God, she thinks I’m going crazy. It’s not . . . because I said to you we talk about the mental health every single day so it’s not a swear word. It’s not a, oh my God, they’re going to take my kids off me. We talk about it so they don’t take it as, I’m not doing that because they’re going to take my kids. They think, oh, yes, brilliant that, brilliant.

R1, Referrer

Challenges were faced where potential families were recognised but relationships did not already exist. Referrers acknowledged that they were more likely to prioritise referral of those already familiar to them. Developing a level of trust with families was considered vital prior to suggesting routes to support:

If I went to a family that started at our school last week and said, oh, I’ve got this course about mental health, they’d go, on your bike, because, yes, I haven’t built up that relationship.

R1, Referrer

Following identification, the process of referring families to the trial was reported as being straightforward. It aligned well with existing referral protocols and, at times, was actually a less convoluted process than the demands associated with referring to other services. Referrers spoke about how easy the trial and intervention was to discuss with families. In aiming to convince families to participate they used the study pack and highlighted their methods of giving families time before following up to gauge interest:

I thought it was an easy one. You know, there’s an easy referral form to get in. It was pretty straightforward, it certainly wasn’t like other referrals. It wasn’t that, it wasn’t pages and pages, which always puts people off. Yeah, it was, you know, it was a quick one-sided thing and talking to the family, them agreeing to it and then you sort of made contact with the family. That’s the only thing I thought that may be a sticky wicket with some of our families, because they don’t answer the phone very well.

R3, Referrer

Sometimes when you initially say to parents that, what about a bit of a referral to this? It’s, you sort of do that once and then you walk . . . have a think about. Then you come back to it and you say, what do you think about it? And it’s sort of that drip feed into there and sort of talking about the project.

R2, Referrer

It was just dead easy. That’s why I couldn’t understand you weren’t inundated because it was so easy, so easy and the families thought it was so easy. I was able to give them a leaflet, talk through it in a meeting, take this leaflet home, have a read, come back tomorrow and if you still want it we’ll fill the form in and that’s how quick and easy it was.

R1, Referrer

After being made aware of the Young SMILES intervention, all practitioners reportedly integrated into their daily routines the business of referring families to the research team straight away and without too much difficulty. This was because of how the referral pathway fitted into their existing work without any reported difficulty:

I’m always keen to refer people onto good quality services that I feel that they’re going to benefit from. So I do feel . . . because I have a drop-in service within one of my . . . I’ve got a high school, so my high school, I’m in my high school for 4 to 5 hours a week.

R4, Non-referrer

I do an awful lot of referring into different, to different, to different companies for different things and it’s trying to find one that will help that certain family sort of thing. So I found it was, I’m quite open about talking about mental health . . .

R2, Referrer

Referrers stated that they worked independently to embed the referral pathway into their existing work-based settings, requiring little or no consultation with others to do so. However, there was recognition that a number of key individuals were involved in the process of obtaining support for CYP and that raising and widening the awareness of the existence of new interventions would enhance the decision-making process:

I wouldn’t need much help in referring families as it is an easy thing to do . . . I mean it doesn’t take much time at all. It would be good if the period you could refer families was longer . . . we had other families that could have been referred . . . as you know [laughs].

R5, Non-referrer

Although the referral process was straightforward, adding little or no burden to current procedures, one referrer took responsibility for following up the progress of a family through the recruitment and intervention process. This aligned with their views that once a referral had been made this did not mean that all responsibility for that family had been passed on. They wanted to retain a role in the process, taking time to support ongoing procedures if needed:

To be honest, that’s why I went that extra mile because when I refer a family it’s not like I fill a piece of paper in and then it’s your business. As far as I’m concerned when I’m referring someone I’m buying into that as well. So when you [researcher] rang me back and said, can’t get hold of . . . it’s not, oh, well, I’m sorry you can’t get hold of . . . I think that’s . . . I’m the referrer so I need to make sure that’s happening. That’s why I did the extra bits to make sure that happened . . . if I got a message off the NSPCC saying it’s been postponed or whatever, I would make sure I spoke to those families that morning and if they weren’t on the playground I’d ring them but when you talk about taking up time in my day, I would say that’s part of my job. It’s part of my job to make sure my families know when the course that I’ve referred on is going to start.

R1, Referrer

This approach of chasing up referral progress and re-engaging with parents, however, was a personal choice and not one practised by others and thus it was not considered vital to the implementation of the Young SMILES intervention. For some, because the Young SMILES trial was voluntary, they did not want to seem like they were forcing parents into it:

I’m more, I do, I do the playground every morning so parents will predominantly come and speak to me about their days and it’s just an informal way of me getting on that playground to see parents and see families and see how they tick. And to sort of say, how’s it going? How’s your day? How’s this week been? Do you need anything? Where are you up to? And to sort of say, well don’t forget we’ve had a chat about that. Don’t forget if you want to do it, if you need the paperwork again come and see me. I’ll print it off and we can go through it again.

R3, Referrer

Reflexive monitoring

Referrers were all interested in developing insight into the experiences of the children they referred to the trial. No formalised ways of obtaining that feedback had been implemented, but referrers reporting seeking feedback during any communication opportunities with the children of parents that arose, for example during scheduled or unscheduled telephone calls or meetings. For the majority, reported outcomes were positive. Children were also offered support after attending sessions, but it was never required:

When I have a parent ask to see me at the front that, I mean, she was one of the ones that we had to keep chasing and rearranging and all that, when I have a parent come to me at the front and say, Young SMILES has changed my life, that’s enough for me.

R1, Referrer

The feedback from the children, the feedback from the parents, after a Thursday was amazing; absolutely amazing. I sent kids on there that had anxiety. I sent children on there that don’t like to be with anybody that they don’t know and they were amazing. They came back, ate their dinner, no worries, no crying, no . . . As a safeguarding manager I left time in my day on a Thursday to give them children support when they came back in case; they didn’t need it.

R1, Referrer

In addition to the feedback received, referrers observed changes in the behaviour of CYP who opened up about talking about mental health after attending the Young SMILES intervention, sharing their learning with other CYP who did not attend:

One of the girls that went on the course, she’s in a group that I do in school as well and she said to me, am I allowed to share things that was on the Young SMILES? I said to her, well, you’re not allowed to share things with names, but you can share . . . if you think that would help our group or it’s a strategy that you could use, and a number of times she shared strategies with a group of children suffering with anxiety.

R1, Referrer

Despite recognising the benefits of the intervention, parents expressed scepticism:

No, I’ve read lots of course details. I’ve read lots of programme details and my families say to me, it’s just the same thing over and over again. They’re just telling us the same things. You just think my parenting’s rubbish. You think this. You think . . . So I thought if I start low, if I get one thing or a parent gets one thing from this course my job has been worth referring.

R3, Referrer

In reflecting on the referral process and how it could be enhanced, the importance of building collaborative supportive relationships between referrers, their organisations and the delivering organisation to involve key individuals at early stages of the process was highlighted. Referrers demonstrated their commitment to making this work and discussed the possibility of developing ‘working parties’ to ensure that barriers or unexpected challenges (particularly those not aligned with their working protocols) are challenged and resolved:

About the taxis, I mean, I think the people who were setting it up, without being horrible to anybody, don’t work in the school so the logistics of a child getting in a taxi is massive. So like the [voluntary organisation] was ringing me and saying, right, yes, OK, we’ll put taxis on. So I said, OK, so what about when that parent goes that child’s in the taxi with them, fine. What about if that parent doesn’t turn up? I can’t send that child with somebody else’s parent because we haven’t had an acceptance with that. Oh, right, well, we’ll have to look into that. So I think the people who designed the programme, fantastic. I think the people of the set-up need to be aware of the policies and procedures in school because I can’t just let somebody go in a taxi with somebody else’s parent.

R1, Referrer

Enhancing engagement with CYP and their parents was something that referrers indicated that they had failed to do to a great extent and something that they felt in the future could enhance engagement and experience:

I think it might be better if there’s a few, a few of us sort of talking it through. And I think it would be better if, to be able to have an open morning, thinking like the, and your, the people are coming here. I’m going to invite a few to come and sort of sell it to them that way. That’s always gone pretty well with getting services in; and I think it’s that knock on effect if others, of other families in the area doing it as well. And then you sort of say, oh well they’re and if they’re not even in primary, some sort of youth service, that type of thing and sort of saying, you know, get those in. Drugs and alcohol maybe that’s the need. So, it’s a bit more of a crossover of people and doing referrals in.

R3, Referrer

In hindsight as a . . . if you were to run it again, that where you put the poster in the thing where all parents can see and . . . things, or maybe on the newsletter. I don’t know. We’ve done that about other things. We didn’t on this occasion. I think it was new. They came in and did it and, yeah, perhaps with more thought if you knew it better you could do that . . . So, it . . . I suppose it’s giving them opportunity to see that this programme’s on offer, and that’s probably where it’s . . . the shortfall’s been maybe, looking at it, but I didn’t even think of it until you come today . . . Early help maybe, yeah, preventative stuff are the ones what we’ve perhaps not targeted, and it’s probably a variety of . . . the time limit you get, someone coming in, oh, we’ve got this project. Great, I’ll refer in. And it’s the ones who immediately come to your head that you refer rather than thinking, right, I’ll think this through and I’ll put the poster up.

R2, Referrer

Referrers acknowledged that incorporating Young SMILES referrals had little effect on their workload but identified that aspects of its implementation could be modified to ensure the well-being of users and enhance experiences including removing the waiting list group, increasing the window of time for receiving referrals and reliable information about waiting times. Despite positive views about outcome, randomisation of some families to usual care was perceived to have detrimental effects and could be challenging for referrers to respond to. Eliminating the option of being referred to nothing was considered an important future approach to overcome such negative effects:

It was hard. It was like [parent] came in and she was like, look, I’m not even good enough for that, because at the time as well she was having job interviews and she’d been knocked back from two of them so she was just like, see, I’m not even good enough. You’re telling me that . . . so it was all that. So I had quite a heated meeting with her and I was like, yes, you are, and had to bring her back down to, look, this is about . . . I did say to her then, this is about a screen with names on, tick numbers, if you’ve got enough ticks you go through. If you’re not right for this scheme you’ll go on the next one maybe. I didn’t know what would happen next and I just needed to come to a plan with her that she didn’t feel low self-esteem and that she’d been let down.

R1, Referrer

Having a longer time period to introduce the value of the Young SMILES intervention to families could improve the referral pathway and have a significant effect on awareness and use of the service:

If it was a longer-term project it is something that could, sort of you can roll out to staff in school. So I could talk, we do safeguarding days. So September we always have a safeguarding day, so we would re-hash all the things that we stand for and we do in our school and we will talk about, I talk about projects like parenting referrals and all those sort of things. So at that point, you know, I would probably stand up and say, we’ve got this new project come in. If any parents, you’re thinking parents will address it or want to talk about it, tell them to come and have a chat with somebody about it. Or they’ll come and bring them down.

R3, Referrer

Reliable information about processes that could be communicated to families was a vital part of sustaining the engagement of families. Referrers reported gaps in their knowledge about some aspects of the process, particularly in relation to waiting times that were of unknown length, which had an impact on the work of the referrer:

Yes, you see my parents do as I say, a little bit. So I say to them, it starts then, and then I go back to them and say, it’s not starting this week so don’t worry, I’ll let you know, so it was all that. So they’re really good but I’ve never come up with a problem that they say, oh, you told me last week, I’m not going on it now. I haven’t come up with that because they do listen and I say, look, it’s been postponed, don’t worry I’ll come back to you. This is when it’s going to start, and they just listen to my word. Again, I think that’s because of the relationship but I could do one next time and if it’s put back put back, put back, they might be, oh, I’m not going on it now.

R1, Referrer

Although acknowledging that referring families to the Young SMILES intervention was not complicated or a burden on referrers’ time, it was suggested that referral rates could be enhanced via adult services where work is focused directly on the parents:

I mean we can sell something to parents and as I say and to families, maybe it’s something that should be sold more with adult services, who the parents are engaging with. Maybe it’s to get adult services, when they have contact with parents to say, this would be really good for your child to attend, I don’t know.

R4, Non-referrer

Child and Adolescent Service Use Schedule

The collection of child resource utilisation data was piloted using the CA-SUS. 130,131 We used the tool to identify the most important aspects of resource utilisation and to assess the feasibility of collecting information on the receipt of care and services in relation to children’s needs and services from the NHS, social care, education, and voluntary and third-sector organisations. We did not calculate costs for this resource use as part of this feasibility study.

The CA-SUS was adapted for our study in consultation with Professor Sarah Byford, the designer of the CA-SUS questionnaire. This adaptation involved removing the sections on out-of-pocket expenses and employment; removing the question on education type; removing the follow-on questions asking name of hospital for the hospital service use questions; removing complementary therapists (e.g. homeopath) from the list of community services, adding NHS walk-in services and NHS Direct to the list of community services; and simplifying the questions in the criminal justice services section. A copy of the CA-SUS version used in our study can be found on the project web page [www.journalslibrary.nihr.ac.uk/programmes/hta/142901/#/ (accessed 1 March 2020)].