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Pryjmachuk S, Elvey R, Kirk S, et al. Developing a model of mental health self-care support for children and young people through an integrated evaluation of available types of provision involving systematic review, meta-analysis and case study. Southampton (UK): NIHR Journals Library; 2014 Jun. (Health Services and Delivery Research, No. 2.18.)

Developing a model of mental health self-care support for children and young people through an integrated evaluation of available types of provision involving systematic review, meta-analysis and case study.

Chapter 5 the case study.

This chapter focuses on Stage 2, the empirical – or ‘primary research’ – aspect of the study, which we conducted using the case study method. We start with an outline of the specific research methods used, after which we provide a descriptive overview of the individual case study sites; we then present our findings, organised according to a number of analytical themes.

This stage of the project was designed to inform research objectives 3 and 4, which were concerned with, respectively, the factors influencing the acceptability of mental health self-care support services for CYP and the barriers affecting the implementation of such services. In addition, as with the mapping exercise (see Chapter 4 ), this stage of the study also helps realise objective 5, which was concerned with the interface between the NHS and other service providers in the provision of mental health self-care support services for CYP.

Stage 2 was conducted as a collective case study . A case study is an empirical enquiry that focuses on a single phenomenon in its real-life context, especially useful (as in our circumstances) when description or explanation is required. 181 Collective case studies are those in which multiple cases are studied simultaneously or sequentially in an attempt to generate a broad appreciation of a particular issue. 182 Yin 181 (p. 6) defines a ‘case’ as a ‘bounded entity’, a broad and flexible definition that allows the case to be as varied as an event, an individual, a service or a policy. In this project we have defined the case as a ‘mental health self-care support service for CYP in England and Wales’.

Sampling and recruitment

A purposive sampling strategy was employed to ensure that the various dimensions of the self-care support typology we derived from the mapping exercise and systematic reviews (see Chapter 4 , Table 19 ) were reflected in our sample. Accordingly, sites were recruited to include a variety of theoretical bases (e.g. cognitive–behavioural, social learning, recovery) and platforms (e.g. face-to-face or remote, group or individual). We also recruited on the basis of organisational characteristics, such as the sector the site operated in (e.g. NHS vs. local authority vs. voluntary sector) and the site leaders (e.g. health professionals vs. other trained workers vs. volunteers). It was also important to include key characteristics of the study population; thus, the sample included sites offering condition-specific and more generic support, CYP from different age groups, and different types of location (urban, rural) across England and Wales. Using the typology and these characteristics, six potential sites were selected from our sampling frame of 33 services (delivered by 27 providers), and these were approached to participate in the study. One site declined to participate so an alternative, similar in terms of typology dimensions and characteristics to the site that declined, was invited to participate and agreed.

The six sites which agreed to participate were:

• a psychotherapy group for young people aged 14–17 years who self-harm and their families, provided by the NHS in an urban area of England
• a group intervention (Dina School) for children aged 5–6 years with emotional and behavioural difficulties (EBD), based on The Incredible Years 183 programme and provided in rural Wales by the voluntary sector
• a parenting group for parents of children with EBD, based on The Incredible Years 183 programme and operating in rural Wales as a joint NHS/local authority initiative
• a resilience-focused family support service for families of children aged 5–14 years with emerging EBD, provided by the voluntary sector (but local authority funded) and operating in an urban area of England
• a national, recovery-focused online support group for young people aged up to 25 years with eating disorders
• a supported online cognitive–behavioural intervention (Beating the Blues 184 ) provided to young people aged 14–30 years with depression and/or anxiety by the voluntary sector in an urban area of England.

Recruitment of participants at the case study sites was also purposive in that it was driven by the characteristics of the particular self-care model employed. Additionally, to ensure a range of relevant perspectives, the views of younger, as well as older, children, and those of parents and staff with differing roles providing the services were sought.

Regarding the recruitment of service user participants (i.e. CYP and their parents), we received valuable advice from the SAG on engaging these participants in the study. Recruitment documentation (the covering letter, participant information sheets, contact form and consent/assent forms; see Research ethics and governance below) was developed with guidance and feedback from CYP. At five of the sites, staff provided the recruitment documentation to current and ex-service users (or to their parents if they were aged 14 years or below), via the post or by handing the documentation to users when they attended the self-care support service. Participants provided their contact details using the contact form and the researcher (Elvey) telephoned them to arrange the interview. For the eating disorders online support site, the study was publicised, including contact details for the research team, on a web page listing details of current research projects wanting to recruit participants, via an e-mail distribution list of service users who were willing to be contacted about research projects, and via the site’s Twitter feed. CYP participants were eligible to participate only if they were aged between 5 and 17 years. Although two of the sites (sites 5 and 6) did not offer services specifically tailored for CYP, they were eligible for this study because they did offer services to those under the age of 18 years. Non-professional participants (i.e. CYP and parents) were offered £10 in gift vouchers as a token of thanks for their participation.

Recruitment of staff at each site was facilitated via a key contact, usually a service manager, who not only took part in the research, but also identified additional relevant staff to invite as participants. At five of the six sites, staff were provided with the recruitment documentation, either through the post or in person by the researcher; at the eating disorders site, documentation was supplied via e-mail.

Research ethics and governance

Like all empirical research conducted within a university setting, the case study was subject to ethical approval by the host institution, the University of Manchester. Moreover, because the research involved potential access to NHS sites and NHS patients, the ethical aspects of the study required consideration by the NHS National Research Ethics Service (NRES) prior to any consideration by the university. Regulations introduced by NRES in 2011 185 allowed an expedited proportionate ethical review in circumstances where a project had no material ethical issues . NRES provides a tool 186 to help researchers identify whether there are material ethical issues or not, and use of this tool suggested that our project might be eligible for such an expedited review. This turned out to be the case and a favourable ethical opinion was obtained through proportionate review in March 2012. As is the standard procedure, this favourable opinion was accepted by the University of Manchester Research Ethics Office shortly afterwards. While conducting the case study research, it was necessary, on two occasions (in September 2012 and October 2012), to inform NRES of a ‘substantial amendment’ to the ethics-approved protocol. One amendment was required because one site requested that the wording on the covering letter be modified to remove the term ‘mental health’. The other arose because another site worked predominantly with children aged 5 years, so we asked that our original lower age limit for CYP participants be reduced from 6 to 5 years. Both of these amendments NRES subsequently approved.

Ethical research is underpinned by three inter-related factors: (1) informed consent; (2) the safety of participants and researchers; and (3) the safeguarding of any data obtained during the course of the research.

Regarding informed consent, all identifiable participants received an age-appropriate participant information sheet informing them of the study’s nature and purpose. The participant information sheets and associated consent/assent forms were designed according to NRES guidance. 187 The versions specific to CYP, furthermore, were piloted with colleagues’ children, students at a local secondary school and young people with experience of mental health services, and were subsequently amended as a result of their feedback. Written consent was obtained from all adult participants. In line with NRES guidance, 187 all CYP participants aged 15–17 years provided their own written consent; parents provided written consent for children under 15 years old, although, in line with good practice, written assent was also obtained from these children. We needed to take a slightly different approach to consent for the online eating disorders support group (site 5). We were interested in postings on the site’s discussion boards – postings that were both anonymous and publicly available. As the postings were anonymous, it would have been very difficult to obtain individual consent for the use of these postings, so we obtained ‘proxy’ consent to access and use these postings from the eating disorders organisation providing the service.

Regarding the safety of participants and researchers, the principal risks identified for participants were that they might get upset during the interview or disclose information (e.g. in relation to child protection) that would require action by the researcher. Written protocols were prepared for both of these situations. Risks to researcher safety were minimised by adherence to the University of Manchester’s guidance on lone working.

Data safeguarding requires that confidentiality and anonymity issues be addressed, not only in the conduct of the research but also in the reporting and storage of any data associated with the research. To preserve anonymity, the data generated by the research were, wherever possible, stored with identifying features removed. In any case, the data were stored securely, with due regard to confidentiality and in accordance with the University of Manchester’s information governance regulations. When the data were circulated around the study team or SAG, analysed or (as is the case here) reported, we ensured that any identifying features were removed.

At each case study site, we complied with any specific research governance requirements. This included complying with NHS Research and Development requirements at the NHS sites selected.

Data collection and management

Case study research requires data from a variety of sources and, once collected, the data should be managed systematically. 181 Data were obtained through semistructured interviews, documentary review and virtual non-participant observation and, wherever possible, from all three participant categories: CYP, parents and staff.

Semistructured interviews

Semistructured interviews were used as the main data collection technique. They were conducted with staff at all six sites and with CYP and/or parents at all sites except the eating disorders online support site. Pragmatism largely dictated the way in which participants were interviewed in that they were given choices as to which approach they preferred (e.g. telephone vs. face to face; individual vs. group). Forty-two interviews involving 52 participants were conducted; 37 were conducted in person, either at the site’s premises or at the service user’s home, and five were conducted via the telephone. The majority of interviews (35/42) were individual, five were joint interviews with a child or young person plus parent, one was a group interview with a child, parent and sibling and one was a focus group of four young people. The interviews ranged in length from 10 minutes (for some of the youngest children, aged 5 and 6 years) to 1 hour and 20 minutes. Interviews were facilitated by the use of topic guides, copies of which can be found in Appendix 12 . All of the interviews were digitally audio recorded with the permission of participants and the recordings were subsequently transcribed verbatim by a professional company.

Documentary review

Where available, relevant documentary evidence was collected from each site. For sites 5 and 6, documentary evidence was obtained simply from the relevant websites of the services. More comprehensive data were obtained from the other four sites, including a referrer’s leaflet for site 1 as well as a printed self-injury ‘toolkit’ used in providing the self-care support service there; a Microsoft PowerPoint general presentation about the Incredible Years services at sites 2 and 3, and one about the funder’s strategic plan regarding these services; an information leaflet about Dina School training for teachers at site 2; and information leaflets about the site 4 service for referrers, parents and CYP. The documentary evidence largely served to provide a contextual background to, and additional understanding of, the six sites.

Virtual non-participant observation

For the eating disorders online support site (site 5), we collected the data via ‘netnographic’ non-participation observation, adopting the principles of a method designed specifically for health-care research. 188 , 189 Netnography is a form of ethnography used in the study of online behaviour, and as ethnography concerns everyday routine behaviours in a natural setting, 190 netnography was an entirely appropriate method of observing a service that operated entirely online. The service centred around discussion threads that were organised by the providers into nine boards, following themes such as ‘recovery’, ‘caring about someone’, ‘introductions’ and ‘poetry’. Two boards were excluded from the study as the content merely described how to use the boards. All postings over a 4-month period (August to November 2012) were collected from the remaining seven boards. These comprised 114 discussion threads with more than 500 individual messages, each of which was screened for relevance. The postings were copied from the website and pasted into Microsoft Word 2010 documents (Microsoft Corporation, Redmond, WA, USA) prior to analysis.

Regarding management and coding of the data, the three data sets – interview transcripts, background information about the sites (documentary evidence) and the online group postings – were imported into NVivo 10 (QSR International, Warrington, UK), computer software designed to assist in the collection, organisation and analysis of qualitative and mixed-methods data.

Data analysis

The data were analysed using the framework method, 191 , 192 which has five stages: (1) familiarisation; (2) identifying a thematic framework; (3) indexing; (4) charting; and (5) mapping and interpretation. For the interview data, familiarisation was achieved by all of the transcripts being read by the team member who conducted the interviews (Elvey; Kendal also facilitated one group interview), and through other members of the research team (Kirk; Kendal; Pryjmachuk; Catchpole) each reading a sample of transcripts. For the virtual non-participation observation data (site 5’s online postings), Elvey and Kendal undertook an analogous process in that they treated the Word documents into which the postings had been pasted as ‘transcripts’. Following familiarisation, the study’s research questions and the topic guides (see Appendix 12 ) were used to devise an initial thematic framework. Using this initial framework, data from the transcripts (including the online postings) and the background documents obtained from each site were then indexed by Elvey in order to produce an initial chart for each of the six sites. An example of such a chart is provided in Appendix 13 . These six charts were then circulated around team members and a final thematic framework was developed through an iterative process, whereby we met as a team several times to discuss the data and any emerging salient themes. As the final thematic framework emerged, the data from the six initial charts were assimilated into a single chart which was used to guide our analysis and interpretation of the case study findings. The final thematic framework is outlined in Table 22 in the Findings section of this chapter, and Appendix 14 illustrates (using one of the themes, ‘facilitating self-care support’, as an example) how data from each of the initial charts were subsequently assimilated into a single chart.

Themes and subthemes emerging from the case study data

• Characteristics of the case study sites

Details of the six case study sites are summarised in Table 20 and described in detail below.

Details of the six case study sites

Site 1: self-harm psychotherapy group

This NHS service was designed for young people aged 14–17 years who self-harm; it also offered some support for the families of these young people via family support groups, and families could telephone the service and talk to staff between sessions. The service was run from an outpatient setting at an NHS mental health hospital. The service operated within a recovery-focused philosophy and was eclectic in its approach, in that the group intervention employed elements of group psychotherapy, CBT, Linehan’s dialectical behaviour therapy 193 and supportive counselling. Groups ran on a weekly basis (weekday mornings), lasted 2 hours and were led by nurses and support workers. Although the service was manualised – in that there was a specific protocol in place for how the service should be delivered – there was no limit, other than reaching the age of 18 years, to the number of weekly sessions a young person could attend. Young people were referred to the service via community or inpatient services.

Site 2: Dina School

The incredible years.

The group for children with emotional and behavioural problems (site 2) and the parenting group (site 3) were interconnected, but separate, services. Both operated as part of Webster-Stratton’s The Incredible Years programme 183 that had been adopted region-wide (across the local authority area) by the commissioning bodies in the region. The Incredible Years is an evidence-based programme, influenced heavily by social learning theory. It emphasises attachment, relationship building and emotional coaching, with a focus on children learning through play and parents and teachers spending time with children, listening to them and giving them positive feedback. The overall Incredible Years programme comprises universal and targeted (indicated) interventions, both of which were available in the region. At the time of data collection, around half of the region’s schools were Incredible Years schools. In these schools, all staff members were trained in the approach and were thus able to implement the programme universally (in a regular classroom setting, for example) or in a more targeted way.

Dina School

Site 2 was an example of a targeted intervention operating in one of the Incredible Years schools. Known as Dina School, it involved children taking part in 18 weekly, small group sessions, which took place in a room at the children’s school. The groups were facilitated by two classroom assistants, who delivered the programme as set out in the Dina School manual. The programme makes use of a dinosaur puppet called ‘Dina’ (which was also used universally in the main classroom setting) as well as two additional character puppets, ‘Wally’ and ‘Molly’. These puppets were used in role plays, demonstrations of behaviours and communication techniques and in video vignettes. Each session followed a similar format, with a review of the ‘homework’ tasks that were set at the previous session, followed by activities and games and the setting of a further homework task at the end. Parents came to collect their children at the end of the session which coincided with the end of the school day.

Site 3: parenting group

Like site 2, site 3 was a targeted programme. It was one of more than 20 Incredible Years group parenting programmes that operated in the same region as site 2, offering parent training to parents of children aged from 0 years upwards, grouped according to the children’s age. The parenting group participating in this study was for parents of preschool children, aged 2–4 years, who wanted support with their child’s behaviour or communication (e.g. being withdrawn or having tantrums that the parent found difficult to deal with). Parents could self-refer or be referred to the service. The service was provided by a voluntary sector organisation and operated from its premises, although it was commissioned and funded jointly by the NHS and local authority. Parents attended 15 weekly group sessions which were facilitated by two members of staff with backgrounds in family and youth work, and in accordance with the programme manual.

Site 4: resilience-focused family support

Site 4 was a voluntary sector family support service provided to families of children aged 5–12 years with complex emotional and behavioural needs who did not require Tier 3 CAMHS care. Some children were referred to the service because their needs were not seen to warrant CAMHS input; others had attended CAMHS and were subsequently referred to this service for the more generalised support with coping and resilience that it offered. The service is based on the Daniel-Wassell model of resilience, 194 a model with six domains – secure base, friendships, talents and interests, education, positive values and social competences – that have some affinity with the principles of recovery. Staff members work through these domains with families to identify the family’s needs and then focus on those domains where the most support is needed. The family support was delivered by a member of staff from the voluntary organisation operating the service. The staff, who had a variety of professional backgrounds including youth work, social work, psychology and nursing, met with the child and his or her parent(s) individually (sometimes together) at home and at school. As with The Incredible Years, this service was manualised with a prescribed number of sessions.

Site 5: online eating disorders discussion board

This site, operated by an eating disorders charity, consisted of online message boards for young people concerned about, or experiencing, eating disorders. The message boards were established around 6 years ago to improve access to support. Although the online eating disorders service was a ‘virtual’ service, operating entirely over the internet, the charity operating the service offered some other services for young people including a telephone helpline and a live online chat service which some message board users had also participated in. Like the self-harm service, this service operated within a recovery-focused philosophy. To post messages, users had to register on the internet site (supplying their name and e-mail address). Although the posts were moderated, they were freely available on the internet for anyone to read. The boards were organised into themes, and users posted messages that mostly described their worries about food or eating, or their experiences of living with eating disorders, as well as messages that sought support from others or offered emotional support and practical tips to others. The boards were moderated by volunteers, many of whom had experienced eating disorders themselves and some of whom had trained in relevant fields such as counselling. Although the service was open to young people up to the age of 25 years, it was eligible as a case study site because those under 18 years of age were represented in the postings. Unlike the other five sites (which were manualised to one degree or another), this service was inherently spontaneous and adaptable.

Site 6: supported online cognitive–behavioural therapy intervention

Site 6 was a charity-operated, supported online CBT service for young people with anxiety or depression aged between 14 and 30 years. Although the service was open to people up to the age of 30 years, it was, like site 5, eligible as a case study site because those under 18 years of age used the service. The service had been established by staff at the site who had had prior experience of anxiety and depression themselves. It was set up in response to a perceived gap in suitable service provision for young people and young adults and aimed to appeal to this group by being accessible and flexible. The site operated as a drop-in centre, whereby people could come without an appointment and access information and advice. Service users came to the charity’s base and worked through a specific online CBT course – Beating the Blues 184 – with a volunteer from the charity facilitating the young person through each CBT session. Like most CBT interventions, this service was manualised with a prescribed number of sessions.

• Participant characteristics

Table 21 summarises the interviews conducted at each case study site. In total, 52 participants were interviewed between July 2012 and March 2013. The CYP ( n  = 17) who took part ranged in age from 5 to 17 years. Of these 17 CYP, four were interviewed as a focus group (at the self-harm group psychotherapy site), and six were interviewed along with a parent, five at the family support site and one at the self-harm site. Of the 15 parents who took part, nine were interviewed individually and six along with their child. Two of the individual parent interviews at the parenting site were conducted via the telephone. The service provider staff interviewed ( n  = 19) included nurses, psychologists, classroom assistants, social workers, youth workers, counsellors and lay volunteers. Three members of staff at the family support, group parenting and eating disorder sites were interviewed over the telephone. The majority of staff and family members were female; two male staff members and three fathers were interviewed. Of the six young people interviewed at the self-harm and anxiety/depression sites, half were male and half female; at the sites where younger children were interviewed, most (8/11) were male.

Participants by site and category

Although the overall quantity of data is sufficient for a case study, 195 a few observations need to be made about the relative success of our recruitment strategy across the six sites. Recruitment was relatively successful for all three participant categories across sites 1, 2 and 4, though only having one parental interview at site 1 was disappointing. Site 3’s recruitment was also reasonably successful given that parents were the target of the service and that, as they were under 5 years of age, we did not have ethical permission to interview the children. We did not attempt to recruit parents at sites 5 and 6 because the very nature of the services at these sites meant that it would be difficult to identify parents. The low numbers of staff participants at these two sites was also understandable because these services – both provided by the voluntary sector – had limited resources to employ significant numbers of staff. With site 5, we did not manage to recruit any CYP participants for interview despite advertising on the service provider’s website and through other online networks. Though disappointing, this is not an especially serious recruitment limitation as any interview data obtained would have merely augmented the CYP’s perspectives on self-care support which we obtained via the netnographic non-participation observation data.

Site 6 perhaps created the most significant recruitment issue in that we only managed to recruit one CYP participant at this site. This site was a relatively newly established service which was operated by a small organisation with one full-time member of staff. We recruited via the service manager who asked that we involve only ex-, not current, users of the service. The service manager searched the contact database and telephoned or sent information to all ex-users inviting them to participate in an interview. During the 7 months that we were in contact with the site, only eight people aged 17 years and below accessed the service. Two agreed to be contacted by the research team and subsequently participated in interviews, one of whom has since taken on a role as a volunteer providing the service.

From the analysis of the case study data, four principal themes emerged, each containing a number of subthemes. These themes and subthemes are summarised in Table 22 and discussed in more detail in the ensuing sections. At this point, however, it can be noted that the first two themes mostly provide contextual detail about, respectively, the users and providers of mental health self-care support services for CYP, whereas the remaining two focus largely on the factors contributing to the acceptability of such services.

Having a mental health problem

This theme provides some contextual detail about CYP’s and their families’ understanding of the mental health problems experienced prior to using the services at the case study sites, their understanding of self-care in the context of these problems and their experiences of any self-care support received.

Understanding the mental health problem

The conceptualisation of CYP’s difficulties specifically as mental health problems appeared to be connected to the CYP’s age. The youngest children interviewed, aged 5 and 6 years, did not describe having any mental health problems or difficulties themselves. School staff and parents tended to think that these children mainly lacked confidence or had difficulties expressing or managing their emotions. Some parents described emotional outbursts and tantrums and two described their children as being ‘unhappy’.

I had concerns about his behaviour; he would break down into quite severe tantrums that would last for 20 minutes . . . he would spit all over the seats . . . strip naked and hit and lash and kick; hurt himself, hurt me. And generally I just felt that I had this unhappy child on my hands … I couldn’t go out with him . . . So I was kind of feeling trapped in my own home because of his behaviour. Parent of younger child

Older, primary school-age children and their parents described various emotional and behavioural problems: being unsettled or disruptive at school; having emotional outbursts at home; having problems with family members or in making friends; lacking confidence; and having communication problems, especially in expressing emotions.

Me and my mum didn’t really use to get along, and not able to cope, like, and with my brother and sister, I didn’t know how to be responsible and stuff. Child

Young people – that is, older children – who had used the self-harm (site 1), eating disorders online support (site 5) and depression/anxiety (site 6) services had a wide range of experiences, from severe mental health problems and diagnosed conditions, to milder symptoms and difficulties. Some attendees at the self-harm site had been diagnosed with depression and others described feelings of low mood, anxiety and intense feelings. Staff at the self-harm group mentioned a variety of self-harm that users presented with, including cutting and burning. Some CYP attending the self-harm (site 1) and family support (site 4) services had experienced more than one type of difficulty or problem, including being bullied at school, not attending school, displaying signs/symptoms of autism, family relationship problems and misuse of alcohol and/or drugs.

Self-care and self-care support

Just as participants described a wide range of mental health problems and difficulties, their experiences of self-care and support for their problems and difficulties prior to accessing the services were also mixed. Obtaining support was sometimes related to their understanding of the specific mental health problem, as in the case of one young person who had struggled with depression over an extended period:

Interviewer: So had you had any help with your depression before you went to the centre?

Young person: No, none, not at all. I had little understanding as well, it wasn’t something that had been spoken about.

Participants generally described undertaking little self-care before coming into contact with the services. Nonetheless, some parents whose children had attended the Dina School groups (site 2) had also previously attended an Incredible Years parenting course and had used some of the approaches at home. A few parents mentioned using techniques from books or television programmes such as Supernanny . Across most of the sites, the situation for many participants was that they came into contact with the services at a point when their problems had emerged, but they had rarely engaged in self-care themselves or received support they were happy with.

With some of the older children (young people), there was some evidence that they could make rational choices regarding self-management, especially when it came to medication:

Young person: I usually forget to take it, or I intentionally go out my way not to take it, because I feel as if I don’t need it and it makes me feel different . . . I was on Sertraline, but it kept me awake and then I was on Mirtazapine and then some other things . . . I didn’t like them . . . I don’t feel as if meds help me.

Another young person: I’m on medication at the moment, because my depression has peaked at the moment . . . so it [the medication] does work.

However, these choices were not always adaptive, as in these examples of young people ‘self-medicating’ with alcohol:

Young person, interviewed in a group: I used to drink and hide in a tree to drink, because my mum wouldn’t allow it, so I used to hide and had to go in a hole and fall out of a tree regularly drinking, that’s how I coped.

Second young person in the group: Yeah. I used to think alcohol helped me, but it used to just make me worse.

Regarding the support received, there were participants at all of the case study sites with experience of accessing some form of health care or support prior to attending the self-care support service; CAMHS, social services, GPs, psychiatrists, paediatricians, school counselling services and social services were all mentioned. For example, some families had a history of contact with social services due to family situations and some parents had sought help because they were concerned that their child might have an autistic spectrum disorder. There were some reports of positive experiences, such as helpful school counsellors, health visitors and other workers:

My outreach worker who works with me to integrate into the community, because I’m, kind of, agoraphobic, I don’t like people, crowds, so he works with me to try and get me into the community. Young person

However, many negative experiences were recounted where families had felt dismissed when they raised concerns, for example, about their children’s behaviour or social understanding and had found support hard to access. The mother of one child who had previously been referred to community-based mental health services had found the care provided inadequate:

It didn’t help much, she used to just enjoy going there because I was doing all the talking, they would watch her play, so it wasn’t . . . [helping her with] expressing her feelings . . . and then it just kind of stopped, they were thinking she didn’t need it, but she’d got so much anger at the time, she wanted to leave the house . . . I was worried for her. Parent

Two settings in particular were singled out for criticism by young people: mainstream schools and inpatient hospital care. Young people had experienced bullying at school, including being bullied about their mental health problems by other students. Some had stopped attending mainstream school and were at school units and felt that staff at mainstream schools often struggled to help students who self-harmed:

They’re not trained in mental health and are only really equipped to do with stuff, like, things to do with education and . . . bullying and peer pressure . . . they’re not equipped . . . they really don’t have a clue when it comes to stuff like mental health and things like self-harm . . . I had a really bad experience with my mentor. Young person

In terms of hospitals, participants described how support for self-harm in inpatient settings focused mainly on preventing physical harm. For example, two participants reported being restrained and put into seclusion (actions which could both be seen as punitive) when staff found that they were in possession of objects which the staff thought the young people would use to self-harm. Participants had found that they could access either group ‘talking therapies’ or an individual to talk to in the units, but had found this problematic because the therapy was not suitable for them at that stage, or because staff did not spend enough time with them:

Young person, interviewed in a group: There’s people there all the time that you can talk to, [but] I think the therapy puts quite a lot more stress on you at the very beginning . . . you’re taken out of your house . . . kind of throw you in with a bunch of new people, that’s hard to deal with . . . it’s a lot harder to then feel comfortable . . . I think, I had therapy twice, it didn’t work, so they basically just left me.

Second young person in the group: [My named nurse] was on nights and then when she was on days, she didn’t speak to me anyway, that was so unhelpful. She came to my room at like half past 10 and I’d be talking about stuff and getting upset and minutes later I had to try and sleep.

Young person: Yeah I had some nights when mine was . . . on nights and the head of [name of department], so he really didn’t have time [for me].

Running throughout the narratives of the young people was a recurring sense of anxiety around accessing support. Feeling alone, not knowing where to turn for help, discomfort and worry about discussing their problems with family or friends were mentioned repeatedly. The following data extract was taken from one of the site 5 message boards:

When you realise youve got some kind of (eating disorder) what was the first thing you all did? It’s just im stuck and going nowhere, the idea of food and excercise is going round and round in my mind, having crazy thoughts in my head all the time- but i cant tell anyone or even talk about it to anyone because i could shy when it comes to spilling out information about myself . . . any help? Pleasepleaseplease . . . ALSO, if you call the youthline what do they ask you and stuff? because I really wanna call them but im scared of the reponse and over the phone (procedure). Young person, verbatim message board posting

Providing self-care support

This section explores the findings relating to staff views about providing self-care support services, their reasons for involvement, training and supervision, and the extent to which their service is integrated with other services.

Service development

Staff at the sites became involved in the services for a variety of reasons: a desire to change things or innovate on the basis of personal, often negative, experiences of mental health services; wanting to improve the evidence base for practice; and often just sheer enthusiasm to help CYP. For example, the manager of one site had been motivated to found an independent alternative to traditional ‘clinical’ approaches on the basis of personal negative experiences elsewhere:

I started to experience the onset of depression and anxiety and looked at what sort of support or help was available to me and there was nothing that I felt I would have been likely to access or appealed . . . so I . . . basically came up with a service that I would have liked to see when I was in that situation and applied for funding and got it. Service lead

At another site, the service lead had been influenced by observations from her own practice, at a time when there was a perceived ‘epidemic’ of self-harm among young people and generally insufficient support available, and when anxiety about the risk of serious harm, including suicide, was high among staff who worked with young people. The rationale behind setting up a group therapy service was that a group approach could be appropriate for young people because of the influence and importance of peer groups to this age group. Moreover, improvements in peers would be clearly visible in a group setting and so serve as a vehicle for hope and optimism in other group members.

The Incredible Years programme, on the other hand, had been adopted at two sites because of its perceived strong evidence base:

I felt really strongly that I knew that the programmes were blueprint [evidence-based] programmes . . . that met the high standards for replicability and for research . . . I really, really like the Incredible Years model. Staff member

Moreover, service development seemed to be coupled with service leads who were enthusiastic and highly motivated, even to the point of being ‘on a mission’:

So it kind of became my mission and it’s grown into the mission for the Authority to develop all of those programmes. Service lead

Across all six case study sites, the attributes of the service leads in particular were suggestive of a high level of leadership skills, in that there was evidence of innovation, planning, empathy (for CYP, parents and colleagues), motivation and communication.

Training and supervision

All of the sites except the online eating disorders site (site 5) were manualised, that is there was a specific written manual in place for how the service should be delivered. The Incredible Years sites (sites 2 and 3) and the anxiety/depression site (site 6) were guided by manuals that prescribed the topics to be covered in each session; the self-harm (site 1) and family support (site 4) services had manuals that were less prescriptive.

At the self-harm site (site 1), all staff running the groups were provided with the service manual and, as part of their training, they also observed groups prior to becoming a group leader. Staff running the groups met monthly for group supervision with the service lead. On its initial formation, staff at the family support service (site 4) had been trained in the resilience approach by its architects. New staff members were first introduced to the model and subsequently trained by the service’s current staff, as well as receiving clinical supervision from a psychologist. At the anxiety/depression site (site 6), training was provided by the company supplying the CBT programme and all volunteers had to work through the course before working as a volunteer; there was no formal clinical supervision in place at this site, however.

The two Incredible Years services (sites 2 and 3) were different in that, of all the sites, they had the most structured and formal arrangements for training and supervision. To deliver a programme, staff members were required to undergo formal training. Staff members were regularly supervised by local colleagues and there was ongoing monitoring from the programme base in the USA. The service lead explained why she thought the training and ongoing supervision and support were important:

We’re using an evidence-based programme and actually unless you really are delivering with fidelity we know that you can’t guarantee that you’re going to get the same results as [the] research . . . everybody who delivers the group in [area name] can be sure they’re either going to be able to work with [or get] supervision from someone who’s accredited either as a peer coach or as a mentor . . . I think that is really important in making it effective. These are hard groups to run, so it’s important ensuring that people do get the support. Service lead

Fidelity was not emphasised as strongly at any of the other sites. This is perhaps because fidelity can be in opposition to flexibility, a characteristic seen by many as a key factor in a service’s accessibility, as will become apparent when the next theme, Accessing self-care support , is discussed.

Integration with other services

As outlined earlier in the site descriptions, the two Incredible Years sites (sites 2 and 3) had been widely adopted by local commissioning bodies. These services were closely integrated with local planning and commissioning structures and with the local education, health and social services sectors. The Incredible Years services were an exception, however. None of the other services had this level of integration with health, education and social care. The family support service (site 4) was integrated in as much as it was run by a voluntary sector organisation but funded by a local authority, with clinical supervision provided by an NHS psychologist. It also had close links with special educational needs co-ordinators (SENCOs) in schools and could form part of an action plan arising from national ‘Common Assessment Framework’ 196 assessments. Staff at the family support service, however, perceived that there were overlaps between their work and that of the NHS and social services, and that they fitted into a niche between the two.

The self-harm group (site 1) was run from a NHS mental health trust, at a CAMH day service. The service is attached to an inpatient unit with residential and non-residential care and education provision. Self-harm groups using the same principles are run at other NHS locations in the region, and although these groups are integrated with other services to the extent that GPs and consultants can refer CYP to them, they are usually run as ‘standalone’ services with little integration with the NHS CAMHS provider delivering them. The eating disorders (site 5) and depression/anxiety (site 6) services were provided by charities dedicated to helping people with particular difficulties in these areas. The depression/anxiety service was run by a small, relatively new organisation which provided some other activities as well as the supported online CBT, and to some extent could be seen as an alternative, rather than a complement to, statutory services. Regarding the eating disorders charity operating at site 5, integration tended to be limited to ‘signposting’ in that message board posters often offered advice to other board users about how to access statutory services, encouraging users to overcome their anxieties in accessing such services and offering opinions about those services.

Where integration was most evident was in the referral processes at the various sites. This is discussed further in the next section.

Accessing self-care support

This theme, and the next, will present findings on the acceptability of the self-care support services, both in terms of their general accessibility (this theme) and the perceived attributes that services and their staff possess that facilitate CYP and their parents to care for themselves (the next theme). Regarding general accessibility, two key subthemes emerged from the data: one pertaining to referral and one focusing on engagement.

Referral to services

Children, young people and their families had accessed the services via a range of routes, including self-referral, signposting and referral by professionals. The self-harm (site 1), family support (site 4) and parenting group (site 3) services were well integrated into referral pathways and several CYP and parents at these sites had been referred in this way. Several postings on the eating disorders message boards (site 5) mentioned being ‘signposted’ to the board by health professionals, including psychologists and doctors. The parenting group (site 3) and anxiety/depression (site 6) sites encouraged self-referral and publicised their services; some parents had found out about the service through leaflets in their child’s school bag, or through a friend. The anxiety/depression site was advertised through posters and leaflets in shops and bars as well as through presentations at schools and Sure Start centres. At Dina School (site 2), staff at the school had approached the parents of children who they thought would benefit from the service and asked these parents for consent to include their children in the group. Schools were a common source of referrals for the family support service (site 4) and two children who participated in the study had been referred by school staff, one by a SENCO and one by a school nurse. The young person interviewed at the anxiety/depression site (site 6) had self-referred to this service following a presentation at school; in interview, the service manager expressed disappointment that no school nurses had made referrals to the service.

One family who had attended the family support service recalled a long wait (around 2 years) from becoming aware of the programme to the time when they started receiving the support. Waiting times were not cited as a problem, however, by other study participants.

Building and maintaining engagement

In building engagement with health-care services, one of the first barriers to overcome can be the physical access to services. The participants at all of the case study sites seemed to encounter few physical barriers to access, though it should be added that we did not recruit those with probably the best information about barriers to access – ‘dropouts’ from the services – to our sample. For the physically provided services, none of the CYP or parents reported particular problems with travel to the sites. The virtual eating disorders support site could be accessed via the internet at any time, although messages were only uploaded when staff members were available at the service to moderate them (until 20.30 on weekdays and until the afternoon on Saturdays). The Incredible Years services (sites 2 and 3) covered a large rural area and were provided in convenient venues across the region. The young people at the self-harm group site (site 1) were all at school or college and often had to miss school or college to attend the service, though none of the young people interviewed raised this as an issue. These young people were mostly brought by car to the service by their parents. There were several examples of staff working to make services convenient to attend, or taking the service to the families. For example, staff at the family support service (site 4) worked with families in their homes and with children at school. The parenting group (site 3) was generally provided in a group setting but could be run by staff on an individual basis at people’s homes if necessary:

Staff member: It’s very different to a traditional service where you might send out an invitation and if the parents don’t come then . . . they might say that you might not be able to access the service. With Incredible Years it’s more about going out and getting the parents really. So it’s about awareness raising, training lots of agencies who know about the programme . . . but [also] offering really nice coffee and biscuits. If parents miss a session, [it’s] really important that they have the hand-outs. So, if it’s possible, the leader goes and visits them at home.

Another staff member: Recently we’ve had a case [where] mum . . . is not ever there physically when we turn up for our appointment . . . so our worker . . . she’ll go to the child’s nursery . . . to try and catch mum at a drop-off, just to have that initial face-to-face engagement because we were mindful that this is a mum who is surrounded at the moment by professionals who are all breathing down her neck, and we wanted to make sure that mum had a fair view of where we were in that process, what our role is and that we’re not scary monsters who are trying to trip her up.

Flexibility in service provision seemed to be a key in not only building, but also maintaining, engagement with CYP and their families. As a member of staff at the family support service (site 4) outlines:

It’s looking at each case on an individual basis and thinking about what are the reasons for disengagement, why haven’t they engaged, is this a language issue, did they not understand when the appointment was, is it that the intervention isn’t working for them . . . It’s quite involved; but we don’t just do a kind of, if you don’t pitch up we send you a letter and then if you don’t pitch up again we bin you off to be picked up by some other agency – we will attempt always to get an answer. And then if it’s just that it’s not working, well, then we’ll have a conversation about that and let’s work it out. Staff member

Another example of the flexible nature of the services was the between-session support that the sites offered. At the self-harm (site 1), family support (site 4) and parenting group (site 3) sites, support in addition to the scheduled sessions was available, including staff being available to parents over the telephone if they wanted to make contact. Staff at these sites emphasised that they worked hard to engage people in the services and to maintain engagement once a supporting relationship had been established. However, a participant who provided clinical supervision at one of the sites provided an alternative perspective on this, suggesting that it was possible to be overly flexible in that, for example, always bringing the service to a family’s home could potentially discourage independence:

I think, the fact that they [the organisation] go out and work with families in their local area, either at home, or in schools . . . that’s really important . . . something that families will like [but] if you’re going to visit somebody at home then . . . how do you evaluate their motivation to change? Because . . . if you’re at home and somebody comes to see you then actually you don’t necessarily need to do anything to engage, other than sit and nod and make the right noises . . . but if you’ve actually got to physically leave the house and go somewhere, then that suggests that your motivation might be greater to engage . . . it’s trying to get the match between that initial buy in to the service [and maintaining engagement]. Staff member (from outside the organisation)

Some staff expressed an awareness of working with parents who were used to being highly monitored by statutory services and said this could sometimes be a challenge when working to engage parents initially. A school-based member of staff, for example, who had referred several children to the service observed:

You do have the odd family who you refer who don’t engage. And it’s very sad really . . . it’s usually . . . parents who have already got to the point of social services . . . [people think] oh, don’t get social services involved, they’ll take my children from me. And once social services are involved . . . they’re breathing down your neck all the time then, aren’t they? I mean, they’re popping in and out of your house all the time, they’re watching your every move, very intrusive. Staff member

Facilitating self-care support

This theme explores the perceived attributes that services and their staff possess that facilitate CYP and their parents to care for themselves. Key facilitators of mental health self-care support for CYP appear to be organisations and staff that are welcoming; a skills focus whereby CYP and parents are taught relevant self-care skills and then given the chance to practise these skills; opportunities for peer support; and the provision of time and attention.

Welcoming staff; welcoming organisations

Positive staff attitudes appeared to be particularly important. At every site (apart from the online eating disorders service), service users spoke spontaneously and positively about the staff running the service, using adjectives such as ‘nice’, ‘lovely’, ‘good’ and ‘thoughtful’ to describe them. Listening to CYP, allowing them to tell their own story and treating them with empathy and compassion, was also important. This was mentioned particularly by parents at the family support service (site 4) and the young people at the self-harm service (site 1), who liked the manner of the staff and contrasted this with previous, negative experiences at other services. Young people using the self-harm (site 1) and anxiety/depression (site 6) services in particular emphasised the importance of being able to trust staff in order to talk to them openly:

You have to feel comfortable talking to that person, if you don’t like them, then you’re not going to feel comfortable, so you’re not going to engage with them at the level that’s needed to help [you] recover. Young person

At several sites, CYP and parents perceived staff as wanting to understand and help them and felt that they were treated with care and compassion:

The service worker talked to me as if he’d been there before . . . went out of his way for me. Young person

It wasn’t just a job to her. Parent of a younger child

Knowing that the service would accept people for who they were and be open to hearing about their problems was an important attribute of the case study sites operated by voluntary sector organisations. Being non-judgemental or offering non-judgemental support was a particularly positive aspect:

You could be honest and say, ‘This is what my child has done’, and you weren’t judged. Parent of a younger child

Indeed, contrasts were sometimes drawn with other statutory or conventional health and social care services perceived (unfairly or not) as being judgemental. A worker who referred into the family support service noted:

You’ve got to the point where this has become . . . crisis time: ‘We’ve got a plan here in front of us, you will do this, you will do this, you will do this’ . . . whereas with [site name] it’s not, ‘you will do . . .’ it’s ’these are the suggestions that we can make, that will make things better for you’. So it’s not as judgemental, well, social services aren’t judgemental, I suppose, but it might feel like they are . . . I hear in lots of groups that I go to . . . ‘you’re all judging me, that I’m this, you’re judging me on that’. Staff member

A similar feeling was expressed in an interview with a young person at another site:

Young person: [With the general practitioner (GP) and] even with CAMHS sometimes . . . it seems a bit like I’m being judged, or it doesn’t seem like they’re there for me in the way that I’d like, but it was different with [site name], like, it definitely felt a lot more welcoming.

Interviewer: Okay. Is it the people at the GP and CAMHS? Or is it more general?

Young person: I think, it’s more the method, like, I mean, it’s just all about a feeling, it feels like if I’m at the doctors . . . it becomes a thing that I’m ill, or there’s something wrong with me . . . you still sit there and you feel like you’re being judged . . . it definitely affects your confidence when you’re trying to answer, like, the questions, like, confidently and with, like, full honesty . . . I don’t know, like, when I saw my GP I didn’t tell him the whole truth, just because I didn’t feel that comfortable.

Organisational features of the sites were also important in determining how welcoming a service was. In the earlier Service development and Building and maintaining engagement subthemes, we discussed how the service leads appeared to have a high level of leadership skills, and described how staff often worked hard to make services convenient to attend, or took the service directly to the families. There were also some comments about the premises that the services were delivered from. At two of the voluntary sector sites, staff explained that particular efforts had been made to ensure that the physical surroundings were attractive to young people, featuring, for example, bright colours and soft furnishings or having music playing. On the other hand, CYP at one site commented that the rooms in which the groups were held were somewhat small. The physical features of the premises, however, were overshadowed by spontaneous references that CYP and parents made to the welcoming ambience. Indeed, there was often blurring between organisational and individual staff attributes: ‘welcoming’, ‘friendly’ and ‘non-judgemental’ were used by CYP and parents to describe both the staff and the general atmosphere or ambience of the service, often in contrast to other services they had experienced.

Activities to build skills for self-care

The use of skill-building techniques and opportunities to practise such skills in their daily lives was considered an important feature of all six services. Children, young people and parents outlined a variety of practical activities and techniques, including games and exercises, which they had used in formal sessions (in vitro) as well as at home and in school (in vivo). Fittingly, given the nature of this study, most of these activities and techniques were designed to assist the participants in managing (self-managing) the CYP’s condition or problems. For example, in the self-harm group (site 1), young people were supported in devising coping strategies other than self-harming; in site 2, children practised communication skills at home that they had learnt at Dina School; and in the family support group (site 4), families were encouraged to action plan and set goals. For younger children in particular, a large proportion of their narratives consisted of their recollections of the various games and activities in which they had taken part. The youngest children stated that they had gone to Dina School to learn things and that they got ‘prizes’ (plastic chips) for doing well at the activities there:

Interviewer: And what did you get a chip for?

Child: When I’m doing stuff nice.

Many of these activities focused on identifying thoughts and emotions or on learning techniques to relieve anxiety or calm anger. These had been introduced by staff at the sites and also practised by children outside the sessions. The older primary school-aged children seemed to have more insight into the purpose of the activities and techniques:

We used to do these words about temper and then after that to calm me down we used to play a few games. Child

The parents who were interviewed also seemed to appreciate practical techniques and talked at length about implementing these at home. Reward systems including sticker charts were mentioned frequently, along with techniques designed to help children manage tasks and express their feelings:

I think it is important to have a task and try and complete it and stuff. Young person

I think she is responding well to positive rewards . . . she loves the reward charts . . . I give her a sticker just on her T-shirt if she’s done something really nice. Parent of younger child

And from an interview with another parent:

Interviewer: Are there any things in particular that you find helpful?

Parent of younger child: Well there was the words on the fridge . . . the fridge magnets spelling out, ‘I’m not happy’, ‘I’m . . .’

Child: ‘. . . sorry’.

Parent: ‘Sad’, ‘I’m sorry’ and . . .

Child: ‘I love you’.

Parent: ‘I love you’, yeah. We did that for a while. We lost all the pieces, like, we did it for a while.

Some games and techniques were ‘prescribed’ as part of the manual or workbook for the course. However, most of the activities allowed some personalisation such as tailoring rewards to the individual child. For example, staff at the family support service (site 4) found out what children were interested in or enjoyed and then looked for local activities or clubs they could join, such as football or the Boys’ Brigade. At the self-harm site (site 1), young people put together their own ‘tool boxes’ of distraction techniques, memorabilia and keepsakes that helped them reduce urges to self-harm. The service also provided support for caring for wounds that arose from cutting, and advice on ways to camouflage scars, with an organisation specialising in this visiting the group.

I’ve got this thing called a tool box in my room that I put all my different distraction techniques inside so, like, if I’m having a bad day, even if I’m not having a bad day . . . I could use the different things. And different things work at different times, so one time, like, writing out your feelings might be enough, or drawing might be enough, but sometimes you have to use a range of things to minimise that urge and sometimes nothing works, but . . . at least I’ve tried. Young person, interviewed with parent

The programmes delivered at sites 2 and 3 (the Incredible Years sites) and site 6 (the anxiety/depression support service) were supplemented by videos for participants to watch that contained vignettes or examples of role plays to augment the situations or techniques that the programmes considered. These were criticised repeatedly by staff and service users for being outdated and participants disliked that they had been filmed in the USA as they would have preferred British accents. One service user found them ‘idealised’ in that the actors looked too ‘perfect’ and suggested that videos featuring real people, not actors, would be more helpful.

Sharing experiences and peer support

Although a key aspect of all of the services at the case study sites was introducing CYP and their families to stock tools and techniques to help them care for themselves, an important aspect of skills building was supporting CYP and parents to discover self-care techniques for themselves. Often, this happened with the support of their peers, especially in the sites operating group-based approaches where other group members could play a key role in generating ideas or giving feedback. For example, children in the Dina School groups (site 2) took part in role plays and other interactions that helped them to think through how they could handle things that children might find difficult, such as sharing:

[Using a puppet to act out] snatching a book, [then discussing], is that kind?, is that unkind? . . . then after a while you’d get them to bring their problems in, you know, if you have a problem on the yard [playground], you know, if someone’s not listening to you, or doesn’t want to play, well, eventually they would come up [and talk about it with the group]. Staff member

Similarly, users of the online support service (site 5) frequently exchanged tips and techniques. Postings on the message boards often included users sharing self-care tips and suggestions with each other, and describing various relaxation or distraction techniques and activities such as reading, knitting, writing, drawing and exercising:

Listening to music is a huge relaxation thing for me, also drawing/writing – either a story, poetry or in a journal. Do you enjoy reading? To begin with i didnt have much concentration for reading, but now I am really enjoying reading again, and i find if i start reading after a meal when i am anxious that I can get lost in the book, and before i know it half an hour has passed. I’ve also tried knitting, but i’m a bit of a perfectionist so that didnt go so well. Hope you are ok, and that some of these tips may help you. Verbatim message board posting

The following were taken from two other sites:

They discuss coping strategies, like, they’ll say, like, if you get the urge to self-harm, what do you do? And they, sort of, come up with, ‘well, I’ll go and do this, I’ll go and put my favourite music on, my film, go for a walk, walk the dog, talk to my mum’ . . . and I do think it’s very beneficial. Staff member

I enjoyed the discussion. And what was nice is the feedback we gave each other . . . Because I think, that does you good, to have other people sometimes go, no, you’re good at that or why don’t you try this or why don’t you try that? . . . because you put it into practice with other people, it works better than you just reading books. Parent

Although the sharing of practical tips and techniques was an important element of peer support, the sharing of the experiences among CYP and parents was perhaps more beneficial. As discussed in the first theme, Having a mental health problem , some participants had not talked about their difficulties with other people prior to coming into the services and had felt alone with their problems. Staff members and attendees at several sites talked about the emotional benefit of being in a group with people who had had similar experiences, in that people who had previously felt isolated with their problems, or uncomfortable about seeking help for them, felt less alone:

It was actually amazing really; firstly because you realise that what your child was doing was normal and that all the other children were doing the same things. Parent of younger child

I think they listen more to their peers, their peers is pivotal, isn’t it, in adolescence, so I think the peer groups are very important, and that sense of belonging is good. And often . . . I’ve found that every single youngster who attends a group, is excluded from some aspect of their life, either from their family or from a peer group, because they’re bullied or they bully or, you know, they don’t fit somehow . . . So I guess being together with other young people helps you feel, you know, you’re not on your own with this. Staff member, another site

As well as receiving support from others, satisfaction gained from feeling that they had helped others was also important to some participants:

It was good for [my daughter] to see that she had helped other people, she liked that; that helped her as well. Parent of older child

As well as perceiving that the sharing of experiences was helpful, staff and parents felt that having a mixture of experiences and people at different stages of illness or recovery within a group provided additional benefits. The self-harm and parenting groups brought together people from different social groups who would normally not socialise together, but who had experienced similar problems, and this seemed to be helpful in terms of giving people a wider perspective on their problems, or perhaps developing empathy:

[They] have a good understanding of each other’s needs . . . it runs well because it’s a mixture . . . they’re all at different stages of their recovery . . . we’ve got young people who have been established for a long time and . . . have almost recovered, others are at the stage of contemplating, sort of, change and in the process of recovery and some that are not ready to change. And that’s, as I say, a very supportive group . . . those that are almost recovered, they do get and understand where [those who are less recovered] are coming from. Staff member

Very heterogeneous . . . you’d have youngsters in local authority care, and then you’d have very upper middle class young people, who were anxious about exams and stuff like that. And that actually works as well, because kind of sometimes it’s good to see people in other situations . . . you thought your situation was really bad, but actually, there’s people who are worse off, and something about that kind of gratitude about what you have got. Another staff member, same site

The participant quoted below, who described herself as ‘middle class and educated’ seemed to agree that this could be a benefit:

It sounds awful, but people that you might not necessarily have mixed with before, because you wouldn’t have had the chance, and got to know them . . . different social spheres . . . all of that’s broken down . . . [there can be perceptions that] . . . some backgrounds are better, supposedly, than others. And actually, you know, one of the mums in particular, who hadn’t got any further education . . . was just a fantastic mum. Whenever we’d . . . learn a new principle, when we’d feed back the next week, her and her partner had discussed it, and had both tried it . . . And it was nice to hear about other people, and there is a range of us, you know, people with partners, people without. Parent of younger child

The ‘sharing experiences’ aspect of peer support was complemented by others including the social aspect and what might be termed an ‘empowerment’ aspect. Regarding the social aspect, service users at the self-harm (site 1) and parenting (site 3) sites enjoyed attending the groups and especially liked the social aspect of getting to know others in the group. The parenting course (site 3) had an arranged ‘buddy system’ where parents were paired up and encouraged to telephone each other between sessions to talk about how they were getting on with their tasks or exercises, and some of these parents also reported forming friendships and continuing to meet socially after the programme had finished. From the focus group:

Young person 1: I prefer group talks, like, talking in groups, instead of taking medication . . . [at first] I was an inpatient so I was really struggling and . . . just having the support off people in the group was what I needed.

Young person 2: We’re good for each other!

Young person 3: We just, like, support people with what’s been going on in their week, and stuff, and it’s nice, because we’re like a little family.

Young person 4: We are like a family aren’t we?

The social benefit of groups was also reported by the staff member at the eating disorders message board service (site 5):

[T]he message board is a really good place to start forging links with other people in a very safe and supported way and it helps to build their confidence . . . when they suggest something to somebody [and they] come back and say, ‘that was really good, I did that and it really worked for me’ [they] make very strong bonds with each other. Staff member

Some of the group activities also appeared to help empower the CYP. For example, the self-harm groups (site 1) helped participants develop empathy by encouraging the young people to take it in turns to chair the group. Each group began with each member giving an update on how his or her week had been, and a role of the chair was to ensure that each person contributed. Staff observed that some young people in the group seemed unhappy or annoyed when they would have preferred not to contribute but the chairperson still asked them to share their experiences with the group. The staff member who described this thought that this could help young people to appreciate the difficult task that staff sometimes faced in encouraging young people to engage in ‘talking therapies’, and that sometimes encouraging someone to contribute in a group, even if they seemed not to want to, could help develop empathy and leadership skills in the young person.

Although our data demonstrate that peer support is beneficial, the risk of ‘contagion’, or triggering self-harm or problems with eating, was perceived as a key challenge by staff at the self-harm (site 1) and eating disorders (site 5) sites. Staff at both of these services saw risks in group work and worked actively to manage such risks. Unlike the parenting site (site 3), where parents were ‘buddied’ with another parent and encouraged to support each other between sessions, young people at other sites were discouraged from having contact outside of the service. At the self-harm site, young people were actively discouraged from meeting outside the group and, at the online site, interaction was controlled through moderation of the message board postings. This involved screening and editing posts to ensure that they did not contain contact information.

Some people who had attended the self-harm groups (site 1) and parenting courses (site 3) remembered feeling nervous about attending their first session. As it was the first time they had attended anything of that nature, they were unsure what to expect and were nervous about having to talk about their difficulties in front of other people. They felt that groups were only helpful for people who were at a stage of their illness or recovery where they were ready to attend a group. Our interviewees had all settled into the groups and had positive experiences, but they thought that the group setting would not be suitable for everyone; some people simply would not want or choose to discuss their problems in a group setting. Staff at the self-harm group identified managing dominant personalities as a further challenge that they had to be aware of, in order to make sure that all group members had a chance to participate during each session.

Time and attention

Giving CYP time and attention appeared to be a valued characteristic of the services. At four of the six sites, participants valued simply spending time with children, especially when this involved enjoyable activities. A key principle of Dina School (site 2) and the parenting course (site 3) was giving children positive attention. The Dina School groups allowed for each child to receive more attention than would be possible in a regular class. Parents felt that their children enjoyed being in the group and that the environment was more realistic than the regular classroom for them to learn about talking about their feelings. Parents who attended the parenting course found that setting time aside for their children was helpful, including scheduling time to play with them and also having activities together as a reward for good behaviour, and reported that their children were calmer. At the family support service (site 4), a worker described how during school holidays, instead of having appointments with children at their school, she had collected them from home and brought them to the centre, and had been surprised by how much they enjoyed this:

Often I’ll go and pick the children up and bring them here, which they just think is the best thing in the world . . . it’s not that exciting, but it’s just something different . . . that’s what some of them say. Staff member

Participants of different ages seemed to enjoy positive attention, perhaps away from a school or the clinical or home environment:

Another thing as well that sticks in my mind about the group is when [staff member] actually took us out once into town . . . as a group . . . just to do something nice, instead of being stuck in a small room that’s quite clinical . . . it was good. Young person

At one site, young people recalled their experiences of being inpatients, when some staff would come to talk to them, but often at inappropriate times or not for long enough. At another, family members of younger children appreciated project workers talking to the children themselves.

I think that young people often really have appreciated the fact that someone has taken the time to listen to them and hear their side of the story. Staff member

An older sibling of one of the children at the same service singled out the way that the project worker had helped her brother to understand his behaviours and the emotions attached to them, and what might affect these:

When [child’s name] used to get angry we used to talk to him and try and calm him down . . . but we never used to speak to him about why he got angry . . . I think because [project worker’s name] spoke to him and broke it down into steps that he could understand . . . and then she used to ask him stuff about his friends and his family. Sibling

Although CYP and parents appreciated the time and attention that staff at the sites gave them, staff mentioned that operational constraints sometimes prevented them from providing as much time as they would have liked. The manuals for the Incredible Years services (sites 2 and 3, Dina School and parenting groups) were prescriptive, with themes and associated activities being set out for each session. However, although staff at these sites liked the fact that all the materials for the sessions, and also the letters to send home to parents, were provided (as this made the course easy to deliver), they felt that there was too great a volume of material, and that they had often had to leave out certain aspects in order to complete the sessions on time.

Sometimes it was hard to keep their attention, because we’ve got a programme to deliver and it’s quite a lot to fit into those 2 hours, so sometimes [we] would look at it before and think we’re never going to fit all that in so we’d think, right, we won’t do that activity today, we’ll do that next week and try to fit in an activity where they’d be moving a bit more and try to adapt it a little bit. Staff member

Both CYP and parent participants at several sites mentioned that they would have preferred more sessions or time with the service – a statement also echoed by staff at some sites – but financial constraints prevented this from occurring. In particular, staff at one of the voluntary sector sites outlined how a scheduled 15-week programme had to be reduced to 12 weeks because of financial and resource restraints.

Now we have this 12-week programme and it used to be a bit more like 15 weeks and we used to be able to be a bit more flexible with what each different family needed . . . I feel I used to do a lot more . . . therapeutic work with the young people and creative work, and some of that has had to be cut because we’re having to be a bit more focused on where we need to get to, which is a bit of a shame . . . I used to do a lot more kind of crafty things . . . than I feel that I’ve got the time to really do now. Staff member

• Summary of the case study findings

This chapter has presented the findings derived from 52 interviews with children, young people, parents and staff, some documentary evidence and over 500 message board postings at six case study sites.

The aim of this stage of the project was to investigate the acceptability of mental health self-care support services for CYP and the interface between mental health self-care support providers, the NHS and other service providers in the statutory, private and voluntary sectors.

A common feature across all the case study sites was the perceived accessibility of the services provided. The self-care support services appeared to offer convenient locations and appointment times, maintained engagement with between-session support, and were staffed by people who were caring and compassionate. Given that self-care support necessarily requires an agent – a professional or lay person to provide that support – it was reassuring to witness passionate, motivated, welcoming, non-judgemental and child-centred staff at all six sites. Where barriers were mentioned, they tended to be discussed in the context of other, sometimes competing, services (including standard NHS and local authority services) rather than with reference to the services at the six sites. These barriers could be seen as criticisms of the other sites and were broadly related to inflexibility: applying (stigmatising) diagnoses and labels, rather than seeing the child or young person as a person needing help and support; being dismissive of, or failing to appreciate, the concerns that CYP and their families might have about having a ‘mental health problem’ or accessing services; adhering rigidly to manualised interventions without questioning the readiness of CYP and their families to self-care or the intervention’s suitability to the CYP; and affording them little choice in their (self-)care.

Taking all of the participants’ perspectives – CYP, parents and staff – into account, we can speculate on some of the key elements of effective mental health self-care support for CYP. From the case study data it seems that, in addition to flexibility, effective mental health self-care support services for CYP seem to be built on straightforward access; positive staff and organisational attributes that are non-judgemental and welcoming; the provision of time and attention; the chance to learn and practise skills relevant to self-care; and systems of peer support which include opportunities to share experiences and practical tips.

If there is an overall constraint, it is regarding the interface with other services. The case study sites cut across the NHS, other statutory providers and the voluntary sector, yet there was no clear pattern of how well these providers worked together, if at all. In the two Incredible Years sites, there was a seamless integration of the health, social care and education sectors; yet in another site (the family support group), even though there was ‘nominal’ integration between health, social care and education, the service preferred to see itself as a ‘niche’ not quite fitting into any of these domains. In the other sites, there was either no visible integration or somewhat erratic integration or, as in the case of one site, an almost defiant refusal to integrate demonstrated by the setting up of an alternative, rather than complementary, service. Where the interface between the sectors worked best was in relation to referral: though only a few services had extremely well-integrated referral pathways, all had some degree of interface, even if it was as simple as merely signposting into, or out of, the self-care support service, or using networks among the sectors to promote self-referral to the service.

Included under terms of UK Non-commercial Government License .

• Cite this Page Pryjmachuk S, Elvey R, Kirk S, et al. Developing a model of mental health self-care support for children and young people through an integrated evaluation of available types of provision involving systematic review, meta-analysis and case study. Southampton (UK): NIHR Journals Library; 2014 Jun. (Health Services and Delivery Research, No. 2.18.) Chapter 5, The case study.
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