Stage 1: Interviews
Four superordinate themes emerged from the interviews which are presented below in narrative form. Although not all themes were found in all four interviews, we have indicated where a theme was specific to a particular participant.
1.The struggle to understand the hearing voices phenomenon
Both young people and parents spoke of a `struggle’ with understanding the experience of `hearing voices’. Andy (17) described this below:
`
We went to various different people, and asked them. And I wasn’t sure what was going on. And I was quite scared. And several things happened in my life at once,.....it was at that point that like things started to get really bad and I started to get really depressed and started to get really worried.’
Interviews with the parents suggested that they looked for meaning in terms of a biological-psychological interaction and developmental explanations. Despite this, they were left feeling that they had no definitive answers. Sasha illustrated this:
`I look back so much at that time to see what made it change. I will never know ... because it all coincided around the same time, whether that...her bodily changes and stuff, I don’t know! Whether it was all too much? Whether the hormones on a developing brain caused something? I will probably never know! I would love to have, you know, a definitive answer, but I don’t know if I’m ever going to have one now.’
It appears that this persisting uncertainty about the understanding of `hearing voices’ was a primary reason why these families turned to CAMHS as a source of information and knowledgeable support.
2.
Battling with the Mental Health Services
All four interviewees expressed scepticism about the effectiveness of available mental health services, based on their own experiences. Young people felt that there was a distance between them and the CAMHS professionals. Linda outlined this below:
`I think in the beginning when I was attending the appointments at [CAMHS], I felt like I was wasting their time. So I felt like in the beginning they didn’t believe me. So I feel like they were kind of annoyed at me as I was wasting their time. As I got to gradually get to know them, I kind of realized that they do kind of understand a bit more.’
Andy also reports felling distanced from mental health professionals:
`There always seems, even when I was in hospital that someone, it seemed it happened that someone was more deserving of services than I was. And that I wasn’t, not worthy..not that I wasn’t worthy...that I wasn’t worth as much time as other people were.’
Thus, the perceived feelings of isolation from CAMHS professionals led young people to feel that they were less `deserving’ of the mental health professionals time and resources. Parents also felt at odds with professionals; however they expressed this in terms of `not being heard’, and feeling under-supported. Louise explained:
`I think they see us in a slightly ambiguous way. On the one hand, we are seen as a really important source of support for - for Andy. But on the other hand we are also seen as. I think a sort of irritation and an annoyance... But then - because they have no psychological resources, they then rely on - they want Andy to be in the community. Who’s going to look after him in the community most? It’s going to be us! And they don’t actually then give us, really any help very much in looking after him in the community... the level of help that the community team is able to provide seems very limited. It seems limited to medication and psychiatric oversight. Umm, and the team doesn’t seem to have a psychologist, it doesn’t seem to have any of the sort of talking therapy support that I think is essential for somebody with Andy’s circumstances.’
Based on these findings, it may seem that having access to resources in order to facilitate care, and also psychological resources, may influence one's experience of CAMHS.
Both young people and their parents expressed frustration around CAMHS care received (in terms of consistency, quality and speed). Andy described it like this:
`It made me feel like I was kind of being passed around. Like umm...not...really....well, that’s not necessarily true. I didn’t feel like I wasn’t cared for. Well I did, for a while. Until I started well seeing people like Sarah [name changed], who is a psychologist who does CBT with me sometimes. And she’s very nice and she makes me feel like I’m cared for. But like, before like, I kind of felt like no one had enough time for me and I was just passed on. When people thought there was nothing else they could do for me.’
Andy’s narrative shows that he wanted CAMHS professionals to have enough time and patience for him; once he was able to find these qualities in someone, he was able to form a therapeutic relationship with them, which made him feel looked after. Linked in with this, it appears that to get the attention of the professionals, Louise and Andy both felt that they had to have a certain level of severity within voice hearing. If their need didn’t seem urgent, they felt like they were a `waste of time’.
Whilst both parents and the young voice hearers found that explaining the meaning of voices and understanding them in developmental contexts beneficial, they felt such services were limited and inaccessible. For them, CAMHS did not provide enough psychological support, especially in terms of alternative ways of dealing with voices. Neither parent nor young person seemed very hopeful about the treatment they were receiving. For Sasha, this is detailed by the escalation in Linda’s care from not getting better or reacting well to any of the antipsychotic medication, to ending up being admitted to hospital, again with no option of psychological input:
`So, in the end she [Linda] was pleading with me not to continue with the medication, So, we stopped. So then they tried her on another medication. Again she had really significant side-effects. So they decided that he felt she needed to be admitted to a hospital. Linda was, I mean again she was not allocated a psychologist on admission. And I kind of assumed part of it would be for her to have a psychological input.’
4.
Wish for a holistic approach
Young people and parents hoped for a more all-inclusive approach that would provide a space to share and express themselves without feeling judged. Linda expressed this with the following:
`I think the good side would have to be doctors who are understanding ... And supportive. Umm, welcoming. Umm, I think they would have to have like, because when they like read from their books, like all those longer words that younger people don’t understand, so I think they need to have like children social skills.’
Interviewer:
`
What would you want to feel like? If you want some special kind of service?’
`I think to feel comfortable being in the room talking to them. And like feel like they are listening to you and not just like being annoyed and feeling like you’re a waste of time. So I think to feel comfortable.’
Places where young people and parents with similar experience could come together were also considered extremely helpful. They conveyed their belief that such a setup could bring a sense of belonging and shared experience that other services were not able to provide. Louise also gives high regard to professionals who have had experiences of `hearing voices’ and opportunities for peer support, as it may bring a sense of identification and empathy. For Louise, this sense of mutual understanding tends to de-stigmatize hearing voices as an `illness’:
`That’s one source of support [peer group support] now that is open to Andy where he can actually meet people who have similar experiences to him and get support from them which is fantastic. He can’t get that support on the NHS. Or everybody who treats and deals with a young person like Andy doesn’t have the understanding of what it’s like, doesn’t understand the experiences, has a particular sort of a view of mental illness that’s about it being an illness and about it being treated by medication primarily.’
While talking about an ideal service, both parents mentioned the importance of a multi-faceted healthcare approach that would extend beyond the child’s immediate medical needs and focus on the social interactions, adjusting and coping of the young person in ordinary life.
Sasha explained:
`I’d also make it more of a holistic approach as well, so that they’re looking at ... resolving other issues within the family and within the environment as well and looking at, just supporting the family as a whole. I just wish that service provided the psychotherapist, the psychologist, the psychiatrist all under within that kind of... the social workers’ whatever else is there that is required, all within that same kind of umbrella..’
Both Louise and Sasha also express a wish for specialist support for parents of young people who hear voices, which would primarily focus on their particular needs.
Stage 2: Surveys
32 young people and 27 parents responded to the surveys designed to test out the generalizability of the themes found in the first stage of the study. The results of the survey are presented below.
Nearly two-thirds of young people (21/30) had some certainty about the reasons they heard voices with 23% of the total sample saying they felt `very sure’ about the reasons they heard voices. Though most of them had some notion of where the `voices’ came from, 30% (nine young people) did not know why they heard these voices. In the parallel survey carried out with parents, a similar but even higher percentage, 78%, (21/30 parents) shared some level of certainty about why they heard voices. Interestingly, a much lower percentage (11%) had absolute certainty about this. Again, a similar but lower percentage (22%) did not know why their child heard voices.
When young people were asked about how they found accessing `useful’ information to aid their understanding of voice hearing, most young people found this `quite difficult’ or `very difficult’. Indeed, only 13% (4/30) found the information easy to access, with the remaining 26 young people finding it either `quite’ or `very’ difficult. In the parallel parental survey, an almost identical pattern emerged with an overwhelming majority of parents finding it difficult to access information about such experiences to aid their understanding. Interestingly, parents were even more likely to perceive the information as `very difficult’ rather than `quite difficult’.
There was a diverse range of feelings that young people expressed in relation to hearing voices. In the parental survey, there was a similar spread of emotional states. Below, the most prevalent feelings are reported.
Confusion: 83% (25/30) of young people talked about feeling `confused’ and this was the strongest choice. In the parents’ survey, this was experienced but to a lesser degree (52%).
Anxiety and Stress: Two thirds, 67% (20/30) of young people talked about feeling `anxious’, 57% (17/30) felt `scared’, and 47% (14/30) felt `stressed’. Interestingly, in the parent survey, feeling `anxious’ and `scared’ were the most common feelings that they felt about having a child who heard voices: 70% (19/27) and 67% (17/27) respectively responded this way. Higher rates of stress compared to young people were also experienced by the parents (63%).
Anger: 40% (12/30) of young people talked about feeling `angry’ about their experience. A slightly smaller proportion of parents in the parallel survey (30%) experienced this.
Lonely: 63% (19/30) of young people talked about feeling `lonely’ as a result of their experience. A further 57% (17/30) described themselves as feeling `lost’. In the parental survey, a much lower number of parents, 33% felt `lonely’ as a result of having a child with such a disorder, whilst a very similar proportion of 52% (14/27) felt `lost’ as a result.
Crazy: A high proportion of nearly half (14/30) of young people talked about feeling `crazy’ about their experience.
Just over a quarter (8/30) of young people felt it had been `quite’ or `very’ easy to access help, whilst over half, 53% (16/30) had found the experience difficult in some way. The remaining 20% (6/30) stated that they had never tried to get help from the mental health services. In the parental survey, a similar spread of responses was found with 30% (8/27) finding it `quite’ or `very’ easy to access help with a high proportion of 59% (16/27) finding this difficult. A much smaller percentage (11%) stated they had not previously had to contact mental health services.
Similarly, young people varied in their responses as to how much they thought professionals involved in their care took their ideas, wishes and views into account. Only 20% (6/30) felt that this had been done `a lot’ whilst a third (10/30) felt this had been partially addressed. A relatively large proportion (47%) felt that was not considered `much’ or `at all’. In the parental survey, the patterns were slightly different with a greater percentage of parents (33%, 8/24) saying their ideas and wished had been considered `a lot’ and a further 29% (7/24) `a little’. Overall, a smaller percentage of parents felt professionals had not taken their thoughts into consideration (38%, 9/24).
4)
Qualities of mental health professionals
Young people were able to reflect upon the positive attributes of those mental health professionals that they had met. Young people had experienced `being listened to’ (68%), `being taken seriously’ (60%), `being believed in’ (56%), `friendliness’ (52%), `being seen as an individual’ (44%), `having someone interested in what they had to say’ (44%), `kindness (44%) and having someone who was `hopeful about their future’ (40%). Again, there was a very wide spread of qualities that they had found helpful.
They were also asked to think about the unhelpful and negative attributes that they had at times been exposed to in certain mental health professionals. The most prevalent response was that they had not always felt `understood’ (62%) whilst others did not feel `listened to’ (54%), or did not feel confident that the professional was sure what to do (50%), were made to feel `not normal’ (50%) and did not feel that the professional had not given `helpful’ responses (46%) to questions. Again, there was a diverse set of responses.
The parental survey tapped into how parents felt they were treated by the services. In many cases, the responses were positive: 74% felt they were seen to be `supportive’, 57% `caring’, 48% `interested’, 39% `understanding’, and 39% `determined’. At the other end of the spectrum, others felt they were perceived more negatively: 35% felt they were seen to be `demanding’, 30% `controlling’, 30% `annoying’, 30% `challenging’, 22% `interfering’, and 35% `demanding’.
Within the qualitative part of the survey, a very mixed picture was also evident but there was a common perception amongst a number of participants that they felt excluded and disenfranchised from their child’s treatment.
`I feel like I’m being left out. I have my son in an inpatient mental health facility and I don’t know what they are thinking about things on a daily basis. They don’t give me updates unless I ask.’
Parents of young people had many thoughts about how such a service for young people should be designed. Many parents talked about the service not being overly dependent on drugs and one where a more eclectic and holistic approach was offered including counselling, peer groups, meditation, drug information sharing and alternative educational opportunities. One parent wrote of a wish to find `a place where young people can talk about what’s happening to them, their experiences and how they cope’. Other comments from parents were far more focused on removing the stigma that has been so intrinsically part of their child’s problem, seeking `a centre where you can go and feel “normal”’ or `one that normalises the phenomenon. One that does not immediately rush to mental illness. One that can be presented to all children at school without stigmatizing any child.’
Young people themselves had thoughts that echoed the parents’ perceptions, with many focusing on less reliance upon medication, a greater openness for sharing information and transparency amongst professionals. A large number of young people wanted to feel less judged and pathologised. One wrote: `It’s important for mental health care workers to see us as fully human and just as deserving of respect as them. Most of them don’t’. Another wrote about her wish for `a service that doesn’t make you feel like everything is lost and you will have to be medicated for life, if not, your problem will become worse.’ Several of the young people wrote about it being 'hard to explain to those who aren’t in the same situation’. They hoped for services in which they could link up with other young people who had experiences similar to their own.