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doi:10.1111/cch.12161
‘They’re not witches. . . .’ Young children and their parents’ perceptions and experiences of Child and Adolescent Mental Health Services C. Bone, M. O’Reilly, K. Karim and P. Vostanis The Greenwood Institute, University of Leicester, Leicester, UK Accepted for publication 30 April 2014
Abstract
Keywords accessibility, CAMHS, child-centred services, children’s views, therapeutic engagement Correspondence: Michelle O’Reilly, The Greenwood Institute, University of Leicester, Westcotes Drive, Leicester LE3 0QU, UK E-mail: [email protected]
Background Recent initiatives have emphasized the ongoing need to include children in healthcare research, which is relevant to the development of both paediatric and mental healthcare services. Our aim was to contribute children and their parents’ perceptions and experiences of Child and Adolescent Mental Health Services (CAMHS), with the objective of providing guidance for those wishing to improve inclusivity and empowerment. Method We performed a thematic analysis of interview data taken from 11 children (9 boys, 2 girls, aged 8–12) and their parents (12 mothers, 2 fathers), who had recently been referred to CAMHS for mental health and educational problems. Results Three core themes emerged from the data. Fear of the unknown refers to emotional apprehension due to uncertainty of what happens in CAMHS. However children also provided useful reassurances for future service users. Therapeutic engagement refers to the importance of being listened to and building up good relationships with professionals. Finally making services acceptable was discussed in terms of issues of accessibility, session tolerances and suggestions for the development of child-centred services. Conclusions Children were able to provide potentially useful opinions of CAMHS. In a time of limited resources it is imperative that the voices of children and their parents are acknowledged in order to improve accessibility and experiences within CAMHS.
Introduction Child and adolescent mental health problems are increasingly recognized both nationally and internationally. Although studies vary, in the UK there are approximately 1.1 million 5to 15-year-olds with a diagnosable mental health disorder, with 40% of these not receiving any specialist services such as Child and Adolescent Mental Health Services (CAMHS) (Department of Health 2004). For children, the prevalence of mental health problems varies, with those with a learning disability or being looked-after having a much higher risk of developing difficulties (DOH 2004; Sin et al. 2010).
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Historically, CAMHS developed from an existing child guidance model but investment led to substantial service developments. Despite this investment and the growth of services in recent years, the provision is still failing to fully meet demands and there remain issues in terms of a lack of clearly defined frameworks to guide appropriate responses (Rao et al. 2010). There have been developments in the understanding of a tiered model of care and the appreciation of the concept of a universal CAMHS (National CAMHS review 2008). However services remain variable nationally and can follow different models of organization. There is engagement with agencies outside of health but this can lead to a layer of added complexity for joint
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working (O’Reilly et al. 2013). The lack of a universally accepted model of care, and the limited investment in CAMHS, has resulted in inconsistencies in service delivery and from this problems can emerge which are not immediately evident to those delivering care. It is therefore essential that service users of CAMHS are involved in service organization and development, and that their voices are heard (Ronzoni & Dogra 2012); this is supported by the Department of Health (2013).
tions and experiences of CAMHS as well as recommendations for future work, with the objective of providing literature that might help guide those wishing to improve inclusivity and empowerment within CAMHS.
Methods Setting and context
Listening to service users Until relatively recently, the tendency in children’s services was to listen primarily to the views of adults, but there has been an increasing agenda in listening to the voices of children (Worrall-Davies 2008). This is important as children’s perceptions may differ from adults in significant ways. For example, Waters and colleagues (2003) found that adolescents provided significantly lower self-ratings on emotional, physical, mental and social health measures than their parents’ ratings of them. Additionally, children are capable of coming up with unique solutions to their problems. Consultations with children with learning disabilities have facilitated the production of mental health promotion leaflets and web-based materials, with the objective of reducing stigma (Taggart & McKendry 2009). Research with children based on the impact of the physical hospital environment has also been practically implemented with success, for example using children’s artwork within paediatric hospital wards (Bishop 2011). Despite these promising advances, children and young people are still not being given the opportunity to participate in decision-making regarding their own healthcare (Coyne & Gallagher 2011). This deficit of child-centred research and resultant action is particularly evident within child mental health services (Worrall-Davies 2008). Walker and Donaldson (2011) reported on the progress of various child mental health initiatives in the UK, arguing that while a common goal was the empowerment of children and young people via their inclusion in decision-making and engagement in processes, this was still only sporadically realized in practice. This is clinically significant as evidence indicates that it is the relationship between clinicians and families that contributes significantly to outcomes, regardless of the model of therapy being employed (Lambert 2005). Engagement of the child can be dependent on whether they feel included in their therapy (e.g. O’Reilly & Parker 2013a).
Aims of the article Taking these points into consideration, we aimed to increase the evidence base via collecting children and their parents’ percep-
This study was part of a wider project on the interface between child mental health and education services. Four CAMH services with eight teams participated. The services were geographically representative of CAMHS in England (inner city, rural/semi-urban, rural/urban, rural/semi-urban). All families with children aged 8–12 years and referred for mental health and educational problems were invited to participate. The sample consisted of 12 mothers and two fathers, and 11 children (nine boys and two girls), totalling 25. These represented a range of mental health presentations: emotional (n = 5: generalized anxiety, mood disorder; phobia; adjustment reaction; bereavement); behavioural or oppositional (n = 4); neurodevelopmental (n = 2: ADHD and autism spectrum); and attachment (n = 1).
Data collection Semi-structured interviews were conducted with the aim of exploring perceptions and expectations of CAMHS. Interviews with children utilized participatory techniques such as emoticons, glitter pens and drawing, to facilitate engagement and help produce a richer picture of their experiences (Coad & Lewis 2004). Children were given the option of having parents present or being interviewed individually (see Tables 1 and 2). Recruitment continued until data saturation was achieved as appropriate for this approach (O’Reilly & Parker 2013b).
Data analysis Thematic analysis was utilized, allowing for an identification of salient themes from the data (Braun & Clarke 2006) and underpinned by an interpretivist framework; from a position of understanding how children feel and experience their social world (Chen et al. 2011). This occurred through a three levels coding process: first, second and third order coding (Boyatzis 1998). Using a data-driven strategy, a manual coding framework was developed by two team members. The codes were merged into six broad themes, with three being pertinent to the research
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Tape and child number
Age
Gender
Parent present
Tape 1 child 1 Tape 3 child 2 Tape 6 child 3 Tape 8 child 4 Tape 10 child 5 Tape 13 child 6 Tape 15 child 7 Tape 17 child 8 Tape 18 child 9 Tape 21 child 10 Tape 23 child 11
9 11 11 8 8 9 8 10 10 12 12
Male Male Female Male Female Male Male Male Male Male Male
No Yes Yes Yes Yes Yes No Yes Yes Yes Yes
Tape and parent number
Child present
Tape 2 parent 1
Yes
Tape 4 parent 2 Tape 5 parent 3 Tape 7 parent 4
No Yes Yes
Tape 9 parents 5 and 6 Tape 11 parent 7 Tape 12 parent 8 Tape 14 parents 9 and 10 Tape 16 parent 11 Tape 19 parent 12 Tape 21 parent 13 Tape 22 parent 14
No No No No No No No Yes
Table 1. Children characteristics Notes Child anxious, parent makes occasional comments Parent does not actively contribute Parent does not actively contribute Parent does not actively contribute Parent does not actively contribute Parent does not actively contribute Parent does not actively contribute Parent makes occasional comments Parent actively contributes
Table 2. Parents characteristics Notes Child is present in the room but not active during the majority of the interview, made occasional comments Child actively contributes to the interview Child present, but not active during most of the interview. Child makes occasional comments Mother and father interviewed together
Mother and father interviewed together
Child actively contributes to the interview
question and included in the article. Inter-coder reliability was established via multiple team members (Armstrong et al. 1997).
Ethics Ethical approval was obtained from the UK National Research Ethics Service. Informed consent was obtained from families using an opt-in process, to ensure their willingness to participate.
Results Three themes were included which represented participants’ key opinions. First, participants phrased responses in terms of fear of the unknown, which refers to emotional apprehension and confusion due to a lack of advance information, but also includes reassurances from the children for future service users. Second, the theme of therapeutic engagement was important, with children and their parents valuing being listened to and
© 2014 John Wiley & Sons Ltd, Child: care, health and development, 41, 3, 450–458
also building up relationships with professionals. Finally they talked about making services more acceptable, in terms of session tolerance, physical surroundings and proactive strategies.
Theme one: Fear of the unknown A significant issue for CAMHS is how to make its services more accessible (DOH 2009). Both children and parents expressed some apprehension regarding their first visit to the mental health service as they were uncertain what would happen during the appointment. The majority of children expressed feeling nervous or scared (sometimes via use of emotion cards) and additionally worried that it would be a negative experience. 1. Respondent: I was a bit scared. Interviewer: You were a bit scared? Can you remember what you felt a bit scared about? Respondent: I didn’t know what we were going to do. (Child 9)
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2. Interviewer: So the first time that you were going to go and you were feeling a bit scared and a bit worried, do you know what you were worried about? Respondent: Uh, he-he might shout at me. [MH professional] (Child 7) As the data illustrate, feeling ‘scared’ was a common claim made by children prior to their CAMHS appointment. Some children worried that they would experience ‘discipline’ from the professional they saw ‘he might shout at me’. Not all children viewed their first appointment this way, however, particularly if they believed that CAMHS could offer some help. Indeed, one of the children was able to express relief that something was being done about the situation. 3. Um, I was happy that someone was actually taking care of it. (Child 3) Nonetheless these fears and uncertainties were also reflected in the parents’ comments, particularly in regard to the lack of information prior to the appointment. 4. I didn’t know it would be a series of tests, or you know, or whether you would have to stand on one leg with an arm in the air or something . . . (Parent 1) 5. Because I’ve never been through anything like it before with G, so I didn’t really know what to expect. I didn’t know how long it would go on for, you know, what I was in for. . . . (Parent 2) It was evident that these parents were unclear of what would happen during the appointment. Their perception appeared to be that the appointment would be far more intrusive and testing than in reality: ‘series of tests’, ‘stand on one leg or arm in the air’ and ‘I didn’t know . . . what I was in for’. Anecdotally, many clinical professionals are aware of the limited understanding parents have when attending the service and sometimes even the reason for attending is unclear. Although research indicates that parents expect clinicians to ‘fix’ their children and their problems (O’Reilly 2013) the parents in our sample showed apprehension, which is perhaps to be expected. The interviewer drew from this and asked about solutions to this sense of uncertainty, with parents requesting more information in advance of attendance.
6. Interviewer: So you would have liked some more sort of background information? Respondent: Yeah. I’m actually a nurse and I’m still bewildered by it, you know. (Parent 7) Children also commented on the advice they would give to other children in advance of their appointment, to help reduce their anxiety. These comments reflect how the opinions of the children had changed after engagement with the service and are more positive. 7. Interviewer: . . . if he was feeling worried about going to see CAMHS, what do you think? Respondent: Just don’t because they’re not witches . . . Just say that it’ll help you out. (Child 8) 8. Interviewer: Is there anything that you would tell him so that he could prepare himself for going to see Y? Respondent: Yes, I’d say don’t feel scared, . . .; you can prepare yourself by being prepared to get lots of niceness. (Child 1) These quotes reflect developmental aspects of the commentary. The use of terminology such as ‘witches’ builds on negative cultural perceptions of ‘witches’ in childhood, mirroring children’s potentially negative preconceptions of CAMHS professionals prior to attending the service. However, this child now appreciated the help they had received. The therapeutic relationship invoked in some children was obviously very positive ‘being prepared to get lots of niceness’ and this can only be beneficial for ongoing care.
Theme two: Therapeutic engagement Therapeutic engagement is important in clinical practice (O’Reilly & Parker 2013a), as it facilitates better clinical outcomes and experiences (Green 2006). The most important aspect of this appears to be good communication. Children as well as their parents made positive comments on the value of feeling listened to and of being able to express themselves: 9. Getting away from the teacher, I could speak to him and he was really nice to me. (Child 1) 10. [CAMHS] just kind of took things and listened and I have to say we felt as though we were being listened to. (Parent 1)
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It is important that parents are listened to, but it is becoming more appreciated in all areas of children’s care that they need to be involved in processes and have their views listened to carefully (Alderson 2007). The therapeutic process is however complex and services do sometimes complicate this further. The families shared some criticisms of things they felt did not help. 11. I think they could have kept me with one lady and keep saying-seeing that person ’cos I think then things would have been a lot better, instead of recapping everything over and over again and actually getting somewhere. (Child 3) 12. Interviewer: What would you like them to do, like if you could just change stuff, straight away? Respondent: Keeping me updated and do the things they actually say they’re going to do. (Parent 8) Families appeared critical of changes of professionals and the lack of consistency in their care. They felt that there was a lack of information from professionals and that there was disruption to ongoing progress. The child appeared quite critical that he had to discuss his problems repeatedly, ‘instead of recapping everything over and over again’ and the parents were left feeling that actions resulting from the appointments were not necessarily completed and carried out.
14. . . . obviously CAMHS is majorly understaffed . . . there needs to be more like a network, you know like so that, there’s not so long between your appointments . . . (Parent 11) Both these parents made fairly strong comments regarding accessibility, with one parent likening the experience to ‘pain’. The chronic lack of CAMHS resources nationally is well documented (National CAMHS review 2008), and it is unsurprising this was reiterated by our participants ‘CAMHS is majorly understaffed’.
Session length and frequency Once in the service, parents are keen for considerable intensive work to take place, which may reflect the complexities of service accessibility or their perceived concern that children can take some time to engage. 15. Interviewer: What would it ideally be for you? . . . Respondent: . . . I think at least weekly. (Parent 11) 16. . . . it should be a longer session. Because it can take ages for a child to get something out and it should be hour long sessions . . . (Parent 14)
Theme three: Making services more acceptable for families
Conversely, children tended to have a different view regarding the time needed in a therapeutic session, typically favouring shorter sessions and in some cases much less frequent.
The participants also commented on their experiences of accessing and utilizing the services. Generally there were descriptions regarding how difficult access was, with comments on the length and frequency of sessions alongside recommendations for making the service more child-centred.
17. It’s just like we had to sit there for like an hour, it’s just like quite boring when I could be in Pizza hut eating a burger or eating a pizza. (Child 8)
Accessibility of CAMHS Parents felt that CAMH services were difficult to access, and even when engaged with services there were comments on the apparent lack of resources. 13. I do think, um, we shouldn’t have had to have gone through such pain. And I do think that it’s not probably as accessible as it should be; these sorts of services. (Parent 1)
© 2014 John Wiley & Sons Ltd, Child: care, health and development, 41, 3, 450–458
18. Um, always talking about, always like my mum and T always like talk and it goes on for hours. (Child 10) Clinical sessions in most CAMHS settings are generally organized into 1-h slots. Although parents appreciate this as they are able to discuss problems in some depth, children can find these times excessively long, particularly if they are not engaged in the conversation. Both of these children appeared to be indicating that they were not really involved in the conversation and were just observers ‘it’s just like quite boring’ and ‘it goes on for hours’. Developmentally, children of this age group have shorter attention spans than adults and also disengage quickly if they do not
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feel included. Indeed, in some instances even if the child was engaged they commented on having shorter sessions. 19. Interviewer: So if you could have changed the amount of time that you saw S for, what kind of time would be the best amount? Respondent: Um, about five minutes . . . No, thirty. (Child 9) 20. Interviewer: . . . So would you have liked to have seen him more often or less often? Respondent: Once a year. Interviewer: So once a year and for two minutes? Respondent: No, half an hour. (Child 10) Interestingly, both of these children suggested brief session times but eventually settled on half an hour being most appropriate. This is more consistent with the developmental literature, which suggests that children have shorter concentration spans (Shaffer & Kipp 2007). However this does depend on the child, and one felt that longer sessions were needed. 21. Interviewer: Okay, and how long would you have liked to have seen her for? Respondent: Two hours (Child 4)
Child-centred services Services designed for children need to consider several issues when making care appropriate for the needs of that group. Clinicians need appropriate training, and opportunity to adapt their consultations in a way that engages children and is developmentally appropriate. In addition, the physical environment needs to be appropriate for developmental and chronological differences when dealing with young people, while also being conducive to the needs of the parents. 22. Respondent: They are like, ’Cos I had ten days good at school and he gave me a certificate . . . Interviewer: And how did that make you feel when he gave you them? Respondent: Happy. (Child 1) 23. Interviewer: Good? What’s been good about it? Respondent: Because we get to play with the toys there. (Child 7) Both of these examples demonstrate that the children appreciated some level of engagement with the service, and that the use
of toys or certificates generated a positive feeling. This can only encourage further therapeutic engagement and is an example of child-centred practice. However, during clinical sessions children and parents may have to be seen separately, which may result in those not in the consultation having to wait. 24. Get a games room . . . Yeah, and when they send me out or when T chats for a very, very, very long time, I’d just go in there. (Child 10) 25. Yeah, um, if there’s just some more stuff to do while you are waiting? . . . Um, I could read a book . . . Um, yeah, that’s all, I like reading. (Child 11) Waiting is often difficult for children, and the resulting boredom can be counter-productive in the therapeutic process. These children made useful suggestions on how to alleviate this problem, and while the implementation of some is too resource intensive ‘Games room’, the principle of entertainment remained constant. Parents also supported a more accommodating environment for children. 26. And there should be more, like when I had counselling you get a cup of coffee; they should be able to have a drink. (Parent 14) In general, parents, once in CAMHS, appeared to be positive regarding the impact of using the service. 27. . . . And like I said, it wasn’t a diagnosis I wanted, I just wanted some, some help and some feedback and strategies on how to cope a little bit better, and make life easier for C really. (Parent 13) 28. I just didn’t know how to help him and how to deal with it. Um, so, yeah, I think they were brilliant. (Parent 11) In addition to being listened to, these families appreciated the strategies that were suggested by CAMHS and commented on how these had helped. Although families come with a number of problems, from these comments it appeared that obtaining a diagnosis was not the central aim of a session, but rather finding some resolutions to their difficulties.
Discussion While there is an acknowledgement that views-led research is valuable, there remains a deficit of child-focused data
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and resultant action (Walker & Donaldson 2011). In this study, children expressed apprehension about their CAMHS appointment, which was echoed by their parents. Although this can be expected to some degree, it may also be a consequence of limited advance information provided by the service, or may reflect the lack of public knowledge in this area of healthcare. Children and parents valued being listened to and the establishment of good therapeutic relationships. They praised professionals that listened to them, but reported issues of inconsistency in service delivery, which echoes a recent focus on dissatisfaction with NHS services (Kennedy 2010). This is also in line with findings from paediatric settings that children value being included in communication and decision-making (Coyne & Gallagher 2011). The involvement of children is viewed as being increasingly important in contemporary practice, which reflects the developing emphasis on children’s rights (Söderback et al. 2011). This ensures that children feel empowered to comment on decisions made regarding their care and that they are listened to by the appropriate professionals. Listening to children as well as adults can be translated into practical improvements for services. This is essential because, as this study illustrated, adults and children had different perceptions regarding what constituted improvements. Adults were concerned with making the most of resources such as waiting times; however, children’s comments mainly centred on their experience of the immediate session, which may reflect their developmental immaturity. Nevertheless, children’s comments are important and while some may seem trivial, the links between dissatisfaction with services and outcomes are crucial (Kennedy 2010). Potentially simple adjustments to CAMHS may make a difference to engagement and outcomes. Indeed, providing somewhere for children to leave messages for others (e.g. as implemented in paediatric hospitals, Bishop 2011) has the potential to empower them, but this needs to be handled sensitively considering the range of mental health problems presented. Children were willing and able to make potentially useful, positive, comments for future service users such as by providing assurances that other children will be treated ‘nicely’ at CAMHS. It seems reasonable therefore to consider harnessing comments such as these to attempt to reduce stigma and provide user-led knowledge about what to expect at CAMHS, perhaps following the examples of previous successful studies such as the leaflets and web materials created by and for children with learning disabilities (Taggart & McKendry 2009).
© 2014 John Wiley & Sons Ltd, Child: care, health and development, 41, 3, 450–458
Additionally, children and parents emphasized the value of action, in terms of reward or motivation for children (via certificates), and in terms of having practical advice for adults. These perceived positive outcomes thus increase the motivation of the family to continue treatment, and can promote empowerment of those involved. Service user views, particularly those of children, are still an evolving area in the health literature. The methodology utilized here enabled the emergence of particular themes, which appeared to be fairly consistent across the sample and thus transferable. There are currently few data available on the views of younger children, particularly those with mental health and educational difficulties, and although their responses were limited primarily because of their young developmental age and educational difficulties, many of the children were able to express their opinions regarding their access to CAMHS. This was even present to the extent of suggesting ways of enhancing services. With increasing agendas for involving service users in the development of services that are appropriate to local need, the lack of accessibility to CAMHS is an increasing issue. In a time of diminishing resources (Majumder 2012; Karim et al. 2014), it is important that potential service users are not denied access to care, and that policy-makers listen to their views. The voices of parents and children need to be acknowledged in the ongoing development of such services in a potentially competitive environment. It is evident that further work related to children’s perceptions of their care is essential to ensure that their rights remain central to service delivery.
Key messages • Children are capable of provide unique perspectives on services. • Liaising with children as well as their parents can help prepare them for CAMHS. • Children and their parents/carers must be acknowledged to improve accessibility. • Children as well as parents value the therapeutic relationship. • Small adjustments can improve child-centred services.
Funding This was an independent study commissioned and funded by the Policy Research Programme in the Department of Health. The views expressed are not necessarily those of the Department.
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Acknowledgements We are grateful to all the participants in this study. We would like to thank the rest of the research team for their support in this project, and particularly Helen Taylor for conducting the interviews.
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doi:10.1111/cch.12161
‘They’re not witches. . . .’ Young children and their parents’ perceptions and experiences of Child and Adolescent Mental Health Services C. Bone, M. O’Reilly, K. Karim and P. Vostanis The Greenwood Institute, University of Leicester, Leicester, UK Accepted for publication 30 April 2014
Abstract
Keywords accessibility, CAMHS, child-centred services, children’s views, therapeutic engagement Correspondence: Michelle O’Reilly, The Greenwood Institute, University of Leicester, Westcotes Drive, Leicester LE3 0QU, UK E-mail: [email protected]
Background Recent initiatives have emphasized the ongoing need to include children in healthcare research, which is relevant to the development of both paediatric and mental healthcare services. Our aim was to contribute children and their parents’ perceptions and experiences of Child and Adolescent Mental Health Services (CAMHS), with the objective of providing guidance for those wishing to improve inclusivity and empowerment. Method We performed a thematic analysis of interview data taken from 11 children (9 boys, 2 girls, aged 8–12) and their parents (12 mothers, 2 fathers), who had recently been referred to CAMHS for mental health and educational problems. Results Three core themes emerged from the data. Fear of the unknown refers to emotional apprehension due to uncertainty of what happens in CAMHS. However children also provided useful reassurances for future service users. Therapeutic engagement refers to the importance of being listened to and building up good relationships with professionals. Finally making services acceptable was discussed in terms of issues of accessibility, session tolerances and suggestions for the development of child-centred services. Conclusions Children were able to provide potentially useful opinions of CAMHS. In a time of limited resources it is imperative that the voices of children and their parents are acknowledged in order to improve accessibility and experiences within CAMHS.
Introduction Child and adolescent mental health problems are increasingly recognized both nationally and internationally. Although studies vary, in the UK there are approximately 1.1 million 5to 15-year-olds with a diagnosable mental health disorder, with 40% of these not receiving any specialist services such as Child and Adolescent Mental Health Services (CAMHS) (Department of Health 2004). For children, the prevalence of mental health problems varies, with those with a learning disability or being looked-after having a much higher risk of developing difficulties (DOH 2004; Sin et al. 2010).
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Historically, CAMHS developed from an existing child guidance model but investment led to substantial service developments. Despite this investment and the growth of services in recent years, the provision is still failing to fully meet demands and there remain issues in terms of a lack of clearly defined frameworks to guide appropriate responses (Rao et al. 2010). There have been developments in the understanding of a tiered model of care and the appreciation of the concept of a universal CAMHS (National CAMHS review 2008). However services remain variable nationally and can follow different models of organization. There is engagement with agencies outside of health but this can lead to a layer of added complexity for joint
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working (O’Reilly et al. 2013). The lack of a universally accepted model of care, and the limited investment in CAMHS, has resulted in inconsistencies in service delivery and from this problems can emerge which are not immediately evident to those delivering care. It is therefore essential that service users of CAMHS are involved in service organization and development, and that their voices are heard (Ronzoni & Dogra 2012); this is supported by the Department of Health (2013).
tions and experiences of CAMHS as well as recommendations for future work, with the objective of providing literature that might help guide those wishing to improve inclusivity and empowerment within CAMHS.
Methods Setting and context
Listening to service users Until relatively recently, the tendency in children’s services was to listen primarily to the views of adults, but there has been an increasing agenda in listening to the voices of children (Worrall-Davies 2008). This is important as children’s perceptions may differ from adults in significant ways. For example, Waters and colleagues (2003) found that adolescents provided significantly lower self-ratings on emotional, physical, mental and social health measures than their parents’ ratings of them. Additionally, children are capable of coming up with unique solutions to their problems. Consultations with children with learning disabilities have facilitated the production of mental health promotion leaflets and web-based materials, with the objective of reducing stigma (Taggart & McKendry 2009). Research with children based on the impact of the physical hospital environment has also been practically implemented with success, for example using children’s artwork within paediatric hospital wards (Bishop 2011). Despite these promising advances, children and young people are still not being given the opportunity to participate in decision-making regarding their own healthcare (Coyne & Gallagher 2011). This deficit of child-centred research and resultant action is particularly evident within child mental health services (Worrall-Davies 2008). Walker and Donaldson (2011) reported on the progress of various child mental health initiatives in the UK, arguing that while a common goal was the empowerment of children and young people via their inclusion in decision-making and engagement in processes, this was still only sporadically realized in practice. This is clinically significant as evidence indicates that it is the relationship between clinicians and families that contributes significantly to outcomes, regardless of the model of therapy being employed (Lambert 2005). Engagement of the child can be dependent on whether they feel included in their therapy (e.g. O’Reilly & Parker 2013a).
Aims of the article Taking these points into consideration, we aimed to increase the evidence base via collecting children and their parents’ percep-
This study was part of a wider project on the interface between child mental health and education services. Four CAMH services with eight teams participated. The services were geographically representative of CAMHS in England (inner city, rural/semi-urban, rural/urban, rural/semi-urban). All families with children aged 8–12 years and referred for mental health and educational problems were invited to participate. The sample consisted of 12 mothers and two fathers, and 11 children (nine boys and two girls), totalling 25. These represented a range of mental health presentations: emotional (n = 5: generalized anxiety, mood disorder; phobia; adjustment reaction; bereavement); behavioural or oppositional (n = 4); neurodevelopmental (n = 2: ADHD and autism spectrum); and attachment (n = 1).
Data collection Semi-structured interviews were conducted with the aim of exploring perceptions and expectations of CAMHS. Interviews with children utilized participatory techniques such as emoticons, glitter pens and drawing, to facilitate engagement and help produce a richer picture of their experiences (Coad & Lewis 2004). Children were given the option of having parents present or being interviewed individually (see Tables 1 and 2). Recruitment continued until data saturation was achieved as appropriate for this approach (O’Reilly & Parker 2013b).
Data analysis Thematic analysis was utilized, allowing for an identification of salient themes from the data (Braun & Clarke 2006) and underpinned by an interpretivist framework; from a position of understanding how children feel and experience their social world (Chen et al. 2011). This occurred through a three levels coding process: first, second and third order coding (Boyatzis 1998). Using a data-driven strategy, a manual coding framework was developed by two team members. The codes were merged into six broad themes, with three being pertinent to the research
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Tape and child number
Age
Gender
Parent present
Tape 1 child 1 Tape 3 child 2 Tape 6 child 3 Tape 8 child 4 Tape 10 child 5 Tape 13 child 6 Tape 15 child 7 Tape 17 child 8 Tape 18 child 9 Tape 21 child 10 Tape 23 child 11
9 11 11 8 8 9 8 10 10 12 12
Male Male Female Male Female Male Male Male Male Male Male
No Yes Yes Yes Yes Yes No Yes Yes Yes Yes
Tape and parent number
Child present
Tape 2 parent 1
Yes
Tape 4 parent 2 Tape 5 parent 3 Tape 7 parent 4
No Yes Yes
Tape 9 parents 5 and 6 Tape 11 parent 7 Tape 12 parent 8 Tape 14 parents 9 and 10 Tape 16 parent 11 Tape 19 parent 12 Tape 21 parent 13 Tape 22 parent 14
No No No No No No No Yes
Table 1. Children characteristics Notes Child anxious, parent makes occasional comments Parent does not actively contribute Parent does not actively contribute Parent does not actively contribute Parent does not actively contribute Parent does not actively contribute Parent does not actively contribute Parent makes occasional comments Parent actively contributes
Table 2. Parents characteristics Notes Child is present in the room but not active during the majority of the interview, made occasional comments Child actively contributes to the interview Child present, but not active during most of the interview. Child makes occasional comments Mother and father interviewed together
Mother and father interviewed together
Child actively contributes to the interview
question and included in the article. Inter-coder reliability was established via multiple team members (Armstrong et al. 1997).
Ethics Ethical approval was obtained from the UK National Research Ethics Service. Informed consent was obtained from families using an opt-in process, to ensure their willingness to participate.
Results Three themes were included which represented participants’ key opinions. First, participants phrased responses in terms of fear of the unknown, which refers to emotional apprehension and confusion due to a lack of advance information, but also includes reassurances from the children for future service users. Second, the theme of therapeutic engagement was important, with children and their parents valuing being listened to and
© 2014 John Wiley & Sons Ltd, Child: care, health and development, 41, 3, 450–458
also building up relationships with professionals. Finally they talked about making services more acceptable, in terms of session tolerance, physical surroundings and proactive strategies.
Theme one: Fear of the unknown A significant issue for CAMHS is how to make its services more accessible (DOH 2009). Both children and parents expressed some apprehension regarding their first visit to the mental health service as they were uncertain what would happen during the appointment. The majority of children expressed feeling nervous or scared (sometimes via use of emotion cards) and additionally worried that it would be a negative experience. 1. Respondent: I was a bit scared. Interviewer: You were a bit scared? Can you remember what you felt a bit scared about? Respondent: I didn’t know what we were going to do. (Child 9)
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2. Interviewer: So the first time that you were going to go and you were feeling a bit scared and a bit worried, do you know what you were worried about? Respondent: Uh, he-he might shout at me. [MH professional] (Child 7) As the data illustrate, feeling ‘scared’ was a common claim made by children prior to their CAMHS appointment. Some children worried that they would experience ‘discipline’ from the professional they saw ‘he might shout at me’. Not all children viewed their first appointment this way, however, particularly if they believed that CAMHS could offer some help. Indeed, one of the children was able to express relief that something was being done about the situation. 3. Um, I was happy that someone was actually taking care of it. (Child 3) Nonetheless these fears and uncertainties were also reflected in the parents’ comments, particularly in regard to the lack of information prior to the appointment. 4. I didn’t know it would be a series of tests, or you know, or whether you would have to stand on one leg with an arm in the air or something . . . (Parent 1) 5. Because I’ve never been through anything like it before with G, so I didn’t really know what to expect. I didn’t know how long it would go on for, you know, what I was in for. . . . (Parent 2) It was evident that these parents were unclear of what would happen during the appointment. Their perception appeared to be that the appointment would be far more intrusive and testing than in reality: ‘series of tests’, ‘stand on one leg or arm in the air’ and ‘I didn’t know . . . what I was in for’. Anecdotally, many clinical professionals are aware of the limited understanding parents have when attending the service and sometimes even the reason for attending is unclear. Although research indicates that parents expect clinicians to ‘fix’ their children and their problems (O’Reilly 2013) the parents in our sample showed apprehension, which is perhaps to be expected. The interviewer drew from this and asked about solutions to this sense of uncertainty, with parents requesting more information in advance of attendance.
6. Interviewer: So you would have liked some more sort of background information? Respondent: Yeah. I’m actually a nurse and I’m still bewildered by it, you know. (Parent 7) Children also commented on the advice they would give to other children in advance of their appointment, to help reduce their anxiety. These comments reflect how the opinions of the children had changed after engagement with the service and are more positive. 7. Interviewer: . . . if he was feeling worried about going to see CAMHS, what do you think? Respondent: Just don’t because they’re not witches . . . Just say that it’ll help you out. (Child 8) 8. Interviewer: Is there anything that you would tell him so that he could prepare himself for going to see Y? Respondent: Yes, I’d say don’t feel scared, . . .; you can prepare yourself by being prepared to get lots of niceness. (Child 1) These quotes reflect developmental aspects of the commentary. The use of terminology such as ‘witches’ builds on negative cultural perceptions of ‘witches’ in childhood, mirroring children’s potentially negative preconceptions of CAMHS professionals prior to attending the service. However, this child now appreciated the help they had received. The therapeutic relationship invoked in some children was obviously very positive ‘being prepared to get lots of niceness’ and this can only be beneficial for ongoing care.
Theme two: Therapeutic engagement Therapeutic engagement is important in clinical practice (O’Reilly & Parker 2013a), as it facilitates better clinical outcomes and experiences (Green 2006). The most important aspect of this appears to be good communication. Children as well as their parents made positive comments on the value of feeling listened to and of being able to express themselves: 9. Getting away from the teacher, I could speak to him and he was really nice to me. (Child 1) 10. [CAMHS] just kind of took things and listened and I have to say we felt as though we were being listened to. (Parent 1)
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It is important that parents are listened to, but it is becoming more appreciated in all areas of children’s care that they need to be involved in processes and have their views listened to carefully (Alderson 2007). The therapeutic process is however complex and services do sometimes complicate this further. The families shared some criticisms of things they felt did not help. 11. I think they could have kept me with one lady and keep saying-seeing that person ’cos I think then things would have been a lot better, instead of recapping everything over and over again and actually getting somewhere. (Child 3) 12. Interviewer: What would you like them to do, like if you could just change stuff, straight away? Respondent: Keeping me updated and do the things they actually say they’re going to do. (Parent 8) Families appeared critical of changes of professionals and the lack of consistency in their care. They felt that there was a lack of information from professionals and that there was disruption to ongoing progress. The child appeared quite critical that he had to discuss his problems repeatedly, ‘instead of recapping everything over and over again’ and the parents were left feeling that actions resulting from the appointments were not necessarily completed and carried out.
14. . . . obviously CAMHS is majorly understaffed . . . there needs to be more like a network, you know like so that, there’s not so long between your appointments . . . (Parent 11) Both these parents made fairly strong comments regarding accessibility, with one parent likening the experience to ‘pain’. The chronic lack of CAMHS resources nationally is well documented (National CAMHS review 2008), and it is unsurprising this was reiterated by our participants ‘CAMHS is majorly understaffed’.
Session length and frequency Once in the service, parents are keen for considerable intensive work to take place, which may reflect the complexities of service accessibility or their perceived concern that children can take some time to engage. 15. Interviewer: What would it ideally be for you? . . . Respondent: . . . I think at least weekly. (Parent 11) 16. . . . it should be a longer session. Because it can take ages for a child to get something out and it should be hour long sessions . . . (Parent 14)
Theme three: Making services more acceptable for families
Conversely, children tended to have a different view regarding the time needed in a therapeutic session, typically favouring shorter sessions and in some cases much less frequent.
The participants also commented on their experiences of accessing and utilizing the services. Generally there were descriptions regarding how difficult access was, with comments on the length and frequency of sessions alongside recommendations for making the service more child-centred.
17. It’s just like we had to sit there for like an hour, it’s just like quite boring when I could be in Pizza hut eating a burger or eating a pizza. (Child 8)
Accessibility of CAMHS Parents felt that CAMH services were difficult to access, and even when engaged with services there were comments on the apparent lack of resources. 13. I do think, um, we shouldn’t have had to have gone through such pain. And I do think that it’s not probably as accessible as it should be; these sorts of services. (Parent 1)
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18. Um, always talking about, always like my mum and T always like talk and it goes on for hours. (Child 10) Clinical sessions in most CAMHS settings are generally organized into 1-h slots. Although parents appreciate this as they are able to discuss problems in some depth, children can find these times excessively long, particularly if they are not engaged in the conversation. Both of these children appeared to be indicating that they were not really involved in the conversation and were just observers ‘it’s just like quite boring’ and ‘it goes on for hours’. Developmentally, children of this age group have shorter attention spans than adults and also disengage quickly if they do not
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feel included. Indeed, in some instances even if the child was engaged they commented on having shorter sessions. 19. Interviewer: So if you could have changed the amount of time that you saw S for, what kind of time would be the best amount? Respondent: Um, about five minutes . . . No, thirty. (Child 9) 20. Interviewer: . . . So would you have liked to have seen him more often or less often? Respondent: Once a year. Interviewer: So once a year and for two minutes? Respondent: No, half an hour. (Child 10) Interestingly, both of these children suggested brief session times but eventually settled on half an hour being most appropriate. This is more consistent with the developmental literature, which suggests that children have shorter concentration spans (Shaffer & Kipp 2007). However this does depend on the child, and one felt that longer sessions were needed. 21. Interviewer: Okay, and how long would you have liked to have seen her for? Respondent: Two hours (Child 4)
Child-centred services Services designed for children need to consider several issues when making care appropriate for the needs of that group. Clinicians need appropriate training, and opportunity to adapt their consultations in a way that engages children and is developmentally appropriate. In addition, the physical environment needs to be appropriate for developmental and chronological differences when dealing with young people, while also being conducive to the needs of the parents. 22. Respondent: They are like, ’Cos I had ten days good at school and he gave me a certificate . . . Interviewer: And how did that make you feel when he gave you them? Respondent: Happy. (Child 1) 23. Interviewer: Good? What’s been good about it? Respondent: Because we get to play with the toys there. (Child 7) Both of these examples demonstrate that the children appreciated some level of engagement with the service, and that the use
of toys or certificates generated a positive feeling. This can only encourage further therapeutic engagement and is an example of child-centred practice. However, during clinical sessions children and parents may have to be seen separately, which may result in those not in the consultation having to wait. 24. Get a games room . . . Yeah, and when they send me out or when T chats for a very, very, very long time, I’d just go in there. (Child 10) 25. Yeah, um, if there’s just some more stuff to do while you are waiting? . . . Um, I could read a book . . . Um, yeah, that’s all, I like reading. (Child 11) Waiting is often difficult for children, and the resulting boredom can be counter-productive in the therapeutic process. These children made useful suggestions on how to alleviate this problem, and while the implementation of some is too resource intensive ‘Games room’, the principle of entertainment remained constant. Parents also supported a more accommodating environment for children. 26. And there should be more, like when I had counselling you get a cup of coffee; they should be able to have a drink. (Parent 14) In general, parents, once in CAMHS, appeared to be positive regarding the impact of using the service. 27. . . . And like I said, it wasn’t a diagnosis I wanted, I just wanted some, some help and some feedback and strategies on how to cope a little bit better, and make life easier for C really. (Parent 13) 28. I just didn’t know how to help him and how to deal with it. Um, so, yeah, I think they were brilliant. (Parent 11) In addition to being listened to, these families appreciated the strategies that were suggested by CAMHS and commented on how these had helped. Although families come with a number of problems, from these comments it appeared that obtaining a diagnosis was not the central aim of a session, but rather finding some resolutions to their difficulties.
Discussion While there is an acknowledgement that views-led research is valuable, there remains a deficit of child-focused data
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and resultant action (Walker & Donaldson 2011). In this study, children expressed apprehension about their CAMHS appointment, which was echoed by their parents. Although this can be expected to some degree, it may also be a consequence of limited advance information provided by the service, or may reflect the lack of public knowledge in this area of healthcare. Children and parents valued being listened to and the establishment of good therapeutic relationships. They praised professionals that listened to them, but reported issues of inconsistency in service delivery, which echoes a recent focus on dissatisfaction with NHS services (Kennedy 2010). This is also in line with findings from paediatric settings that children value being included in communication and decision-making (Coyne & Gallagher 2011). The involvement of children is viewed as being increasingly important in contemporary practice, which reflects the developing emphasis on children’s rights (Söderback et al. 2011). This ensures that children feel empowered to comment on decisions made regarding their care and that they are listened to by the appropriate professionals. Listening to children as well as adults can be translated into practical improvements for services. This is essential because, as this study illustrated, adults and children had different perceptions regarding what constituted improvements. Adults were concerned with making the most of resources such as waiting times; however, children’s comments mainly centred on their experience of the immediate session, which may reflect their developmental immaturity. Nevertheless, children’s comments are important and while some may seem trivial, the links between dissatisfaction with services and outcomes are crucial (Kennedy 2010). Potentially simple adjustments to CAMHS may make a difference to engagement and outcomes. Indeed, providing somewhere for children to leave messages for others (e.g. as implemented in paediatric hospitals, Bishop 2011) has the potential to empower them, but this needs to be handled sensitively considering the range of mental health problems presented. Children were willing and able to make potentially useful, positive, comments for future service users such as by providing assurances that other children will be treated ‘nicely’ at CAMHS. It seems reasonable therefore to consider harnessing comments such as these to attempt to reduce stigma and provide user-led knowledge about what to expect at CAMHS, perhaps following the examples of previous successful studies such as the leaflets and web materials created by and for children with learning disabilities (Taggart & McKendry 2009).
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Additionally, children and parents emphasized the value of action, in terms of reward or motivation for children (via certificates), and in terms of having practical advice for adults. These perceived positive outcomes thus increase the motivation of the family to continue treatment, and can promote empowerment of those involved. Service user views, particularly those of children, are still an evolving area in the health literature. The methodology utilized here enabled the emergence of particular themes, which appeared to be fairly consistent across the sample and thus transferable. There are currently few data available on the views of younger children, particularly those with mental health and educational difficulties, and although their responses were limited primarily because of their young developmental age and educational difficulties, many of the children were able to express their opinions regarding their access to CAMHS. This was even present to the extent of suggesting ways of enhancing services. With increasing agendas for involving service users in the development of services that are appropriate to local need, the lack of accessibility to CAMHS is an increasing issue. In a time of diminishing resources (Majumder 2012; Karim et al. 2014), it is important that potential service users are not denied access to care, and that policy-makers listen to their views. The voices of parents and children need to be acknowledged in the ongoing development of such services in a potentially competitive environment. It is evident that further work related to children’s perceptions of their care is essential to ensure that their rights remain central to service delivery.
Key messages • Children are capable of provide unique perspectives on services. • Liaising with children as well as their parents can help prepare them for CAMHS. • Children and their parents/carers must be acknowledged to improve accessibility. • Children as well as parents value the therapeutic relationship. • Small adjustments can improve child-centred services.
Funding This was an independent study commissioned and funded by the Policy Research Programme in the Department of Health. The views expressed are not necessarily those of the Department.
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Acknowledgements We are grateful to all the participants in this study. We would like to thank the rest of the research team for their support in this project, and particularly Helen Taylor for conducting the interviews.
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