Acceptability of intervention: parent and children and young people qualitative studies

The value of qualitative research nested within clinical trials is increasingly acknowledged,138,139 especially when it pertains to complex health-related matters.140 Rather than being seen as a mere appendage to the main trial, it is often used to explicate a deeper understanding of the perceptions of those delivering and receiving a treatment. In this respect, qualitative research not only forms a crucial part of the trial’s evaluation, but also assists in determining the meaning behind the quantitative findings.139,141

Two qualitative studies were conducted as part of the Young SMILES trial to explore the views of those who had the opportunity to attend the intervention. The first explored the perceptions of the parents who attended the parent element of the intervention and the second explored the perceptions of the CYP who received the Young SMILES intervention.

Study 1: parent interviews

Methods

Parents were recruited through purposive sampling techniques. All parents (n = 14) allocated to the intervention arm were invited for interview. Maximum variation sampling techniques could not be deployed in this study because our study sample was too small. Between April 2018 and May 2018, the identity of the parents who received the intervention was revealed to the research team, taking place after the collection of the primary outcome measures. The parents were asked to attend a qualitative interview by the researcher in person at their last follow-up data collection meeting.

Consent was gained at trial baseline and information about the qualitative assessment was provided after the collection of the primary outcome measures. The interview took place at a time and venue most convenient to the parents, which was in their homes and in two instances a community centre. Usually only the researcher and the parent were present at the interview, but in two cases the child was present throughout because the parent had no one to look after them. The parent gave written consent before the interview commenced. No field notes were made during or after the interviews. Participation was voluntary and reimbursement was provided in the form of a £10 voucher.

Data collection

A semistructured interview schedule was developed in advance of the interview, which was based on prior knowledge of the research area,6,17,68,76 in addition to evidence gleaned during the modelling phase of the intervention. The schedule was designed with the aim of focusing on particular themes, while permitting the participant to freely raise issues that appertained to these themes. See www.journalslibrary.nihr.ac.uk/programmes/hta/142901/#/documentation (accessed April 2020) for topic guides that informed the structure and content for all qualitative interviews.

The opening section focused on what the parent thought about the trial when they first heard about it. Therein was an exploration of their initial motivations for agreeing to participate, as well as how their awareness of the trial was raised (i.e. via a service, practitioner, advertisement poster, etc.). The parent was then asked whether or not their child wanted to attend the intervention. This question was asked to gain insight into how Young SMILES appealed to children from the parents’ perspective, and whether or not additional motivation to attend was required.

The next section of the interview explored parental experiences in the group. In particular, the parent was questioned about what it was like to discuss parental mental illness with other parents encountering the same difficulties. Perceptions of how facilitators presided over discussions and activities around sensitive themes were also sought, identifying key skills that are required in such instances and whether or not they were demonstrated in sessions by the facilitators. This section of the interview was concluded with a discussion around the perceived benefits and disadvantages of being separated from the children during sessions.

The following section explored the experienced and observable effects of the intervention on the family. The object here was determine not only how Young SMILES helped the parent co-manage their mental illness alongside their parenting responsibilities, but also whether or not the intervention had a demonstrable impact on their children’s QoL. The researcher also asked if Young SMILES made any difficulties worse as a direct or inadvertent result of attending sessions. Whether or not parents disclosed negative remarks about the Young SMILES intervention, each was nonetheless asked what could be done to improve the intervention to help their family.

The parent was then asked how their experiences of receiving an intervention within the confines of a group of other parents compared with more conventional, individualised support. The interview concluded with the parent being asked to provide recommendations on how the intervention could be improved.

A male Young SMILES researcher (Adekeye Kolade), who had lived experience of parental mental illness, and whose qualifications include a master’s degree in research and a postgraduate diploma in counselling and psychotherapy, carried out all interviews. Adekeye Kolade also has experience in qualitative research, gaining informed consent and adhering to the code of conduct stipulated in the SOPs [see www.journalslibrary.nihr.ac.uk/programmes/hta/142901/#/documentation (accessed April 2020)], which ensured compliance with research governance, health and safety, informed assent/consent, transcription services, data management and dealing with potential challenges that emerge within the interview process. The one interview that Adekeye Kolade did not carry out was carried out by Craig Callender, whose qualifications include a Master of Science (MSc) in Psychology. Craig Callender also has experience of clinical settings with vulnerable groups as an assistant psychologist and support worker.

Adekeye Kolade had previously met with the parents during previous recruitment and quantitative data collection visits. Familiarity with the researcher was thought to enhance the interview process given that they had had previous opportunities to build a relationship with the researcher and the researcher was already aware of their circumstances, which eliminated the need to repeat relevant information. Adekeye Kolade informed parents that he was not involved with the delivery of the intervention and that their personal views of the Young SMILES intervention would be used only in an anonymous way. Interviews lasted from 18 to 65 minutes.

An encrypted audio-recording device was used to record parent interviews, which were then transcribed verbatim by an independent transcription company.

Data analysis

Analysis and collection of data were carried out at the same time to allow for the interview schedule to be amended for later interviews in the light of the data collected. Transcripts were subject to thematic analysis,142 commencing before knowledge of the trial’s effects were gained from the quantitative data. Transcripts were read and re-read by three members of the research team: the researcher who conducted the interviews and two other qualitative researchers (PBe and JG). NVivo (QSR International, Warrington, UK) is considered to be the best software for managing qualitative data,143 and was used to transform the qualitative data into codes, thereby ascribing multiple and variegated units of meaning to different parts of each transcribed interview.142 Codes were then built into themes through a process of consultation.

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.

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.

Key findings

Demographics of the parents who took part in an interview can be found in Table 24. In total, 14 out of 20 parents who were invited consented to take part. All but one of the participants were mothers, with over two-thirds being aged < 34 years. All parents reported diagnoses of SMI; most experienced comorbid mental health conditions.

Following the open coding of all transcripts, codes were mapped on to the TFA framework. The resulting coding tree can be found in Table 25.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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].

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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.’

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.

[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.

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.

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.

Study 2: children and young people interviews

Methods

Purposive sampling was used in this study. Only those allocated to the intervention arm were invited for interview (n = 24). Between April 2018 and May 2018, the researcher was unblinded as to which children were allocated to the intervention. This took place immediately after the primary outcome measures were collected. The participants who received the intervention were invited to attend a qualitative interview by the researcher in person.

Consent was gained at trial baseline for the research team to make subsequent contact regarding additional research opportunities. Invitation letters and study information sheets were handed to the child and parent by the researcher after the primary outcome measures had been collected. This was to ensure that the researcher remained blind while collecting these measures. A time and venue for the interview was then agreed on, which was in the participant’s home or school. All interviews were conducted with the child alone except in one case where the parent was present because she did not have anywhere else to go during the interview as all other rooms in her house were occupied. Written assent was provided by the children at the time of the face-to-face interview. The parent also gave written consent before the researcher interviewed their child. No field notes were made during or after the interview. Although participation was voluntary, reimbursement was offered to each participant in the form of a £10 voucher.

Data collection

A semistructured interview schedule was developed in advance of the interview, which was based on prior knowledge of the research area, in addition to evidence collated and discussions held with key stakeholders (including CYP) during the initial development phase of the intervention. The schedule was designed with the aim of focusing on particular themes, while permitting the participant to freely raise issues that appertained to these themes.

Age-appropriate language was used to frame open-ended questions to the CYP. The opening section covered aspects related to CYP’s initial thoughts and feelings about the trial, whether or not they wanted to go, and what their original motivations were in deciding to attend. The CYP were then asked questions about their experiences of being part of a group with other children, as well as their relationship with the facilitators. The researcher then asked about the CYP’s favourite/least favourite activities, and then encouraged the CYP to speak about the reasons behind their view. Thereafter, the CYP was asked about their experience of their parent also attending sessions.

The interview then moved on to how the Young SMILES intervention differed from previous support the CYP had received, which was followed by questions about whether or not the trial helped with any difficulties that afflicted the participant’s QoL. The CYP was then asked about which areas of the Young SMILES intervention could be improved to make the intervention better, if there were any at all. The interview was concluded after the researcher gained insight into what the CYP would say to someone who is thinking about attending the Young SMILES intervention.

All interviews were carried out by a male Young SMILES researcher (Adekeye Kolade), who had lived experience of parental mental illness, and whose qualifications include a master’s degree in research and a postgraduate diploma in counselling and psychotherapy. Adekeye Kolade also has experience in qualitative research, gaining informed consent and adhered to the code of conduct stipulated in the SOPs as detailed previously [see www.journalslibrary.nihr.ac.uk/programmes/hta/142901/#/documentation (accessed April 2020)]. The one interview that Adekeye Kolade did not carry out was carried out by Craig Callender, whose qualifications include a MSc in Psychology. Craig Callender also has experience of clinical settings with vulnerable groups as an assistant psychologist and support worker.

Adekeye Kolade had previously met with the children during previous recruitment and quantitative data collection visits. Familiarity with the researcher was thought to enhance the interview process given that they had had previous opportunities to build a relationship with the researcher and the researcher was already aware of their circumstances, which eliminated the need to repeat relevant information. Adekeye Kolade informed CYP that he was not involved with the delivery of the intervention and that their personal views of the Young SMILES intervention would be used only in an anonymous way. Interviews lasted from 16 to 54 minutes.

An encrypted audio-recording device was used to record CYP interviews, which were then transcribed verbatim by an independent transcription company.

Data analysis

Data analysis mirrored the approach adopted for the parent interviews, detailed previously. Transcripts were read and re-read by three members of the research team – the researcher who conducted the interviews and two other qualitative researchers (PBe and JG). The TFA was similarly used to assess the acceptability of the Young SMILES intervention among CYP in accordance with the seven constructs of the framework: affective attitude, burden, perceived effectiveness, ethicality, intervention coherence, opportunity costs, and self-efficacy (see Table 27). To maximise data collection and sample recruitment, the analysis of the interview data did not distinguish between the index child and other siblings in families where more than one sibling had attended the intervention.

Key findings

Demographics of the CYP who took part in an interview can be found in Table 26. In total, 17 out of 24 CYP who were invited consented to take part. Relatively similar numbers of girls and boys took part. Although different age groups were represented, the majority of the CYP were aged 8–10 years.

Codes were mapped on to the TDF framework, the results of which can be found on the coding tree seen in Table 27.

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.

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.

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.

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.

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.

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

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

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.

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.

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.

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.

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.

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.

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

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.

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.

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?

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.

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.

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.

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.

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.

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.

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.

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.

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.

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’.

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.

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

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Strengths and limitations of parent and children and young people studies

The exploration of parents’ views provides useful insight into the acceptability of delivering a child-centred intervention from the perspective of the individuals who are experiencing the difficulties that may project onto their children and that the intervention aims to overcome. As is inherent in many qualitative studies, the study was subject to a number of limitations, most specifically with respect to generalisability.

Reflecting on the data collected, it was also apparent that the sample may have been biased towards a group of mothers who were not necessarily ‘ready’ to receive an intervention directed at understanding how their mental health difficulties affected their children. Many narratives from the parents highlighted the need for a more personalised, needs-based approach centred on their experiences as opposed to their children’s.

In spite of the perceived bias in the sample, there was variation in the experiences and views obtained. There was clear support for the intervention, which was balanced by more negative views highlighting elements of the intervention that may need to be adapted further to better meet the needs of those attending.

The exploration of CYP’s views of the Young SMILES intervention provides illuminating evidence of how the intervention is seen through the eyes of those whose lives it is intended to improve. Although the inclusion of children in the acceptability study was dependent on the consent of their parent, it was not reliant on the parent taking part. Children whose parents did take part were interviewed separately; thus, they could express their views without being concerned about how their parent may react. Potentially, this enhanced our ability to obtain a more truthful insight into CYP’s experiences of attending. For older children, some narratives expressing openness about their feelings towards their parent were indicative of this.

Our sample size was confined to CYP and parents who had been randomised to the Young SMILES intervention. As this was a feasibility study, and target recruitment figures were notably small, the number of CYP and parents available to invite was limited and people who did not consent to taking part in the trial were unattainable. Individuals who did not take part in the intervention may be averse to taking part in group interventions but we were unable to explore this or any other barriers that they may face. The resulting parent sample recruited was biased towards mothers, with only one father partaking, but the CYP sample was representative of children of all ages and both sexes, with over two-thirds of the children who attended represented in this study. Despite this observation, over three-quarters of the parents who attended the intervention completed an interview. Although this is indicative of reports in previous literature, it leaves some gaps in our knowledge.

Two researchers were involved in conducting the interviews, both of whom had previously been involved in collecting baseline and follow-up measures as part of the trial. Therefore, for some, relationships may have already been built, contributing to the ease of participation for parents and CYP. However, as distinction between service delivery and trial procedures is not always apparent, participants may have been cautious about expressing negative views about the intervention if they thought that the researcher was part of the service team. Despite this possibility, a range of positive and negative experiences were collated.

We did not use the theory of change to guide the interview schedules used in the parent and CYP qualitative studies, which would have been an alternative approach. As there was a limited population from which to sample, it was inappropriate for the broader study aims. Instead we focused on intervention acceptability and perceived effectiveness of the intervention as a whole. That said, we used an established theory of acceptability that is recognised as a strategy to optimise information power. In addition, we did not present our analysis for additional comment because of the inability to recontact participants post trial.

Discussion

Qualitative work, by nature, allows us to identify potential intervention benefits on a personal level but does not guarantee that differences in outcomes quantitatively collected will be significant. Therefore, data need to be interpreted in the context of subjective effectiveness rather than objective evaluation.

Children were enthusiastic about attending the Young SMILES sessions, improving their mental health literacy and making new friends, but narratives highlighted the need for their role supporting their parent to be acknowledged. This was not clear when developing the intervention but was clear in relation to the theory of change model. For some, discourse reflected on how their learning, and subsequent understanding, from attending the Young SMILES sessions could directly affect their parent and family rather than reflecting on changes to their own QoL.

Parents, despite initial apprehensions, were motivated to attend for the benefit of their child’s well-being. However, discussions about the acceptability of the intervention, for most, focused on the benefits that they had personally achieved, moving the focus away from their children. Some views regarding what they would be discussing in sessions appeared misaligned with the aims of the Young SMILES intervention, with many expressing the need for more time to discuss their own experiences. Although parents felt that their needs were not necessarily met, they were still supportive of their children getting help independently of themselves. The Young SMILES intervention was explicitly designed to address service gaps identified in the previous review68 (i.e. child-centred psychological education). This does not preclude the need for other services. If effective, it would be nested within service provision. This intervention would be delivered as one component of a broader set of support strategies for CAPRI families.

For both children and parents, their experiences of the intervention compared favourably with other support received previously, particularly having the opportunity to spend time and share experiences with others in similar circumstances. Both recognised the importance of spending time apart to enhance the benefits gained from the intervention but also saw Young SMILES as a place where they could have spent more quality family time. The atmosphere and environment was important and, for most, was enhanced by the enabling personalities of the facilitators.

Older children’s narratives appeared to display less satisfaction than younger children. Although this may reflect a poorer fit with the intervention, it may also be that they are more able to appraise their experiences on a wider level than younger children. Older children’s views raised issues concerning the ability of a single intervention to support children in a broad age range. The same issue could be highlighted for the inclusion of parents by addressing parental ‘readiness’ and cultural needs.

Acceptability and potential long-term outcomes were compounded by the time-bounded nature of the Young SMILES intervention. Children and parents emphasised the importance of the relationships that had developed. However, only parents commented on how these could be extended (e.g. via Facebook) after completion of the intervention. Children valued the relationships and wanted them to continue and clearly noted how they came to an end as the intervention ended.

Furthermore, it should also be noted that our sample contained a disproportionately low number of families from ethnic minority backgrounds, with Asian people being the only ethnic minority represented in the trial. The low proportion of ethnic minority families and the lack of diversity among those minorities in the trial mean that generalising the results to ethnic minorities must be done with caution. Any further research could look to adopt specific strategies to encourage a more diverse sample.