‘Hearing voices, and unusual sensory experiences’ In Conversation with Dr. Sarah Parry

In this podcast, Dr. Sarah Parry, Clinical Psychologist, researcher at Manchester Metropolitan University, discusses what the term hearing voices means, its prevalence, and its manifestations in childhood and adolescence.

This fascinating topic has a dearth of research, and Sarah talks about two of her recent papers, one of which will be discussed in detailed at our FREE virtual journal club ‘CAMHS around the Campfire’ in January, do take a look at what’s on offer.

Sarah explains how the condition can be exacerbated by anxiety, the stigmatisation, and explains this relational aspect to voice related distress. There are also a number of excellent suggestions for further information and some valuable insights.

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Dr. Sarah Parry is a Clinical Psychologist and Practice Fellow with experience of working in a range of NHS and private sector organisations. Sarah principally works in the field of trauma and children’s mental health. Research interests include therapeutic uses of formulation and the therapeutic utility of compassion for clients and practitioners alike. Sarah and her colleagues also explore how interpersonal trauma can impact aspects of people’s lives, and how adults and young people develop coping strategies in response to traumatic experiences. Sarah’s research has been published in a range of peer-reviewed journals, including the Journal of Children’s Services, the Journal of Child Sexual Abuse, and the Journal of Trauma and Dissociation. Biog via Manchester Metropolitan University

Transcript

Interviewer: Hello and welcome to the In-Conversation podcast series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Jo Carlowe . A freelance journalist with a specialism in Psychology. Today I’m interviewing Clinical Psychologist and Practice Fellow, Dr. Sarah Parry of Manchester Metropolitan University. Sarah principally works in the field of trauma and children’s mental health. Today’s focus will be on two papers that Sarah recently co-authored on voice hearing in adolescence, one from July 2020 that appeared in Child and Adolescent Mental Health, CAMH and the other from November 2020 CPP. If you’re a fan of our In-Conversation series, please subscribe on iTunes or your preferred streaming platform. Let us know how we did with a rating review and do share with friends and colleagues. Sarah, thank you for joining me. Can you start by introducing yourself?

Dr. Sarah Parry: Sure, hi. As you say I’m a clinical psychologist. I specialise in trauma and work primarily with children and young people who have been affected by trauma in one way or another, and over the last few years I’ve been working with children and young people who hear things that others don’t or see things that others don’t, or perhaps even feel the presence of someone or something around them. We can call these experiences unusual sensory experiences. They’re also sometimes associated with emerging and early onset psychosis, although as we’ll discuss, they’re actually really common and most children who have unusual sensory experiences don’t go on to develop later mental health difficulties.

Interviewer: Sarah, how did you come to be interested in this field?

Dr. Sarah Parry: Really through my doctoral thesis where I was working with women who had been affected by a great deal of abuse in their younger years. I was trying to work with them to get a better understanding of a particular condition called dissociative identity disorder. It’s also called multiplicity. It used to be called, we don’t say this anymore, but it used to be called multiple personality disorder, really where the self-splits into different parts so that the different parts can help with survival, essentially, and coping during and after trauma.

And all of those women told me how they had been experiencing hearing voices and other sensory experiences when they were children. So I thought, you know, wouldn’t it be helpful perhaps to hear from young people directly as to what that experience is like and maybe what mental health practitioners can do to help. So that’s what led to the Young Voices Study, which was a study that we really developed to re-learn essentially what we thought we knew and what we wanted to find out more about from young people and parents.

So we went to young people and parents directly and just said, please tell us about your experiences of voice-hearing. We’d love to hear about it from your perspective, and we were lucky enough to get incredibly rich data and actually lots of answers to questions that we didn’t know to ask. So it was a really educational piece of work for us and our colleagues as well to learn about things that we just didn’t know about and to learn about new aspects of voice-hearing directly from young people and parents that really haven’t been explored much before.

Interviewer: Can you give some sense of how prevalent voice-hearing is in childhood and adolescence?

Dr. Sarah Parry: So voice-hearing is a sensory experience. It’s actually really common. So some researchers have suggested that almost one in five children will have a voice-hearing experience before the age of 13. This is not something that’s particularly niche or only relatable to mental health difficulties, such as psychosis. This is a really common developmental phenomenon that many, many, many children can experience, and the important thing I think to mention is just voice-hearing really exists on a continuum.

So when a young person says that they can hear a voice or hear voices, it’s really important that we don’t have too many assumptions attached to that because it’s going to be a very different experience from one person to the next.

Interviewer: Despite this prevalence, there has been little qualitative research undertaken with young people directly. How did you address this dearth when carrying out your own research?

Dr. Sarah Parry: It can be really quite tricky to involve young people in research like this in a way that is accessible to them. I don’t mean accessible in terms of whether or not they can take part. Of course, they can, and they’re the experts in their own experience, but in terms of just how the research is done. So we liaise with our colleagues at Voice Collective, which is a fantastic charity based in London, but they work all over the country and provide peer support and community-based support for young people with unusual sensory experiences and their parents as well, and we worked with them to try and find the most helpful ways to involve young people in this research and their volunteers and many of the young people that work with Voice Collective suggested actually it’s so much easier if they can just do something online and they’re not relying on transport or relying on people to give them lifts to places where they could meet us in person or even just kind of having a quiet space at home where they could confidentially have a kind of teleconference conversation.

So although we invited participants to take part in person, if they wanted to come and meet us. They were very, very welcome too. We offered a teleconference or telephone platforms but actually the vast majority took part through an online survey that we created in a way that we hoped would really just help young people tell their story. We were asking direct questions, but we made sure that all the questions were optional, for example, so that young people could answer the questions that were most pertinent to them.

We mentioned throughout that some questions may just be more relevant than others, and we raised the questions in a very narrative way to provide a platform for those individual stories, and actually it was lovely to hear from a lot of the young people that took part that they actually really enjoyed talking and writing about their experiences. So that seemed to work well.

Interviewer: I noticed in your studies you comment that the term hearing voices can mean different things to different people, and you’ve already mentioned really that it can also entail sensory experiences. So can you say what hearing voices encompasses?

Dr. Sarah Parry: I can try, although I think this is something that we’re still developing a better sense of, and within our campaign we very much focused on the data that we had in relation to the form and function of voices. Whereas in our CPP paper, where we had a whole and complete data set, we had a really holistic descriptions of voice hearing, and I think what’s really important to mention as well is that we asked about voice hearing. We included a couple of questions as to whether or not young people may have any other multisensory experiences and we were really overwhelmed at how many young people actually said that they did have this really, kind of, multisensory experience.

So in our CCP paper we propose a new continuum of multisensory and multi-cell features of hearing voices to try and capture the breadth and depth of voice-hearing for adolescents, which we really hope may offer a framework for future study and certainly intervention design in that we need to be thinking about multisensory coping strategies for multisensory experiences, which young people also described in the data.

Interviewer: Can you give some examples then of multisensory experiences?

Dr. Sarah Parry: Some of them are quite closely connected to the voice hearing experience. So it might be a voice that has particular colours or smells or a kind of feeling attached to it. Others seem more separate. So it may be that there is a certain imagery that is also present which may or may not be connected to voice hearing, and actually we heard from some younger participants that they almost personify their voice almost in the way that we hear children describing imaginary friends where there seemed a whole personality around the voice, which could be very pleasant, very comforting or it could be really very scary.

One of the other things that we heard from a number of young people is just that the voices had very distinct tones, characters, and were sometimes familiar, sometimes unfamiliar. So sometimes they were almost like whispers and echoes from the past. Other times they were completely alien and unrecognisable.

Interviewer: Sarah, what did your research show in terms of the function these voices and sensory experiences played for the young participants in your study?

Dr. Sarah Parry: We can kind of think about this, I think, in two halves. So what came through the data was that we can look at form and function in terms of comforting and pleasant voices and then those that are perhaps more frightening or perhaps more critical. So in terms of the form of pleasant and agreeable voices they seemed trustworthy, reliable, safe. They were characterised with those personal qualities I mentioned. Interestingly, they often had a neutral gender or a female gender and were kind of spoken about as, kind of, kind and safe.

And in terms of their function it was really relational and social. They provided advice, support, and companionship. It was really interesting to hear from a lot of young people who had these comforting voices. That they weren’t just voices they heard from. There was a reciprocal relationship, so these voices had almost taken on a function of being someone that the young person could talk to. So if we think about what that means in terms of meeting a young person’s need, perhaps that they have developed those voices as coping strategies, because they maybe didn’t feel they had somebody safe to talk to.

So I think that, you know, things that I think were really important to understand. Conversely, if we start thinking about the threatening and critical voices, there was much less characterisation and they seemed a little bit less tangible, which was reflected in that the children seemed to feel as though they had less control over these voices as well. So the voices could feel very controlling, quite antagonistic, and had that kind of ghost like haunting quality. We heard again and again they could be very demanding and commanding.

So these are the ones that are saying things like do this. You must do this, if you don’t do this and so on and so forth, and really their functioning was to interfere with functioning. So they were provoking anxiety. They were interfering with children’s concentration at school. They were disturbing sleep. So they were actually really getting in the way of functioning rather than facilitating functioning in the way that the more comforting voices did.

Interviewer: In your research there’s an emphasis on systemic influences, and it is the parents described how voice related distress was exacerbated by observed anxiety and others, such as family members and friends and by stigmatisation about voice hearing. Can you explain this relational aspect to voice related distress?

Dr. Sarah Parry: There’s been a few studies that have looked at this in that the people in a child’s social world can have such a huge influence on how they see themselves, think about themselves. So we know this more generally in terms of, you know, important people in children’s lives have big impacts on how that young person is doing, but what was really interesting here is that we found that the reactions of important adults in the child’s life not only influenced how the child felt, but they could influence the nature of the voice hearing experience.

So, for example, we heard from a few children who were quite happy with their voices. They haven’t really thought much about it. They didn’t seem particularly aware that everybody didn’t have these voice hearing experiences until they told somebody, and then the reactions from those adults could be really damaging. So one girl told us how she hadn’t really thought much about her voices and then was put straight into therapy the minute that she disclosed that she had these experiences and that gave her so many messages about being poorly or ill and that something was wrong and made her feel really anxious.

And we heard from other young people who described how their voices had kind of switched from being quite benign to being quite frightened or frightening or critical. From this, you know, I think we can really recognise how important it is that the general public know more about these experiences and are able to provide reassurance and help normalise their experiences when young people tell them, because actually when a young person goes to their parent or their teacher and says, I think I’m hearing a voice or I’m hearing things other people don’t hear, if they can be met with an accepting curious, reassuring response the chances are things will either stay as they are or improve. Whereas if they’re met with dismissal or criticism or fear, then that could really wind things up in an unhelpful way.

Interviewer: How do you work with this because I would imagine lots of parents and also teachers don’t realise that this is prevalent. So I would imagine a parent might become very anxious if their child is hearing voices. So what kind of family interventions have been found to be beneficial?

Dr. Sarah Parry: It’s perfectly natural for parents to feel worried if their child discloses to them that they can hear voices. There is so much stigma around voice hearing and other unusual sensory experiences. So I suppose one thing I’d like to say, please don’t give yourself a hard time, parents, if you’ve panicked, because I’m sure the majority will have done. It is completely understandable.

The key thing really is to go back to that reassurance, to normalisation, reassuring children that actually loads of children have these experiences, and to ask perhaps some curious questions about what the voice sounds like? How often they might hear the voice. Has it got a name? What does the child think about their experience? So giving that child empowerment and agency to reflect on their experience. There’s a real lack of research with young people. That’s why one of the reasons we did this study and sadly that means there’s a real lack of family involvement in research with younger age groups as well, but we can see from research with older teenagers and adults that actually family involvement in terms of support, education is absolutely invaluable.

So it’s really important that parents feel able to support their child through this. It may be as simple as helping the child understand their own experience but also, as the saying goes, nothing comes from nowhere. So parents and teachers are fantastically well placed to be able to look for stresses in their children’s lives and use them. Look for any needs that aren’t being met, and myself and other colleagues have had a real increase in referrals during the pandemic, less so recently.

But during the initial lockdown where children’s routines and education and social networks were really just sort of pulled away, we saw an increase in the number of parents seeking help for children who were hearing voices or perhaps developing imaginary companions or seeing visions. This may be something that we will see a little bit more of, and my message to parents really would just be to try and provide that emotional support for the young person.

Interviewer: What coping strategies did participants find helpful, including creative and multisensory strategies?

Dr. Sarah Parry: We heard from a number of young people that multisensory hallucinations require multisensory coping strategies, which gives those of us who deliver talking therapies a lot to think about and creativity and a more holistic approach, as well as asking young people what they’re already finding helpful. Though we actually heard from a lot of young people who had found their own way to supporting themselves through writing or imagery, visual breathing, any sort of number of creative pursuits and physical exercise, talking with understanding friends or siblings.
And for some people their voices in themselves may be a comfort for stressors in their lives. So it’s really important that mental health practitioners don’t automatically assume that the voices themselves are the problem. The voices may actually be helping the child cope with something else. It’s important to think about that spectrum of coping strategies, potentially including the voice hearing experience. That said, of course, for some young people voice hearing can be terrifying and the experience is unique to everybody.
So it’s important to understand it from the individual’s perspective, but just stripping away those assumptions, but really in terms of coping strategies having somebody safe to talk to, having outlets for expression and having their emotional needs met through safe and positive relationships seemed imperative.

Interviewer: Are there any good resources for parents or young people themselves you would recommend?

Dr. Sarah Parry: Voice Collective, the charity I mentioned previously have got a fantastic range of self-help materials on their website into voice and the Hearing Voices Network also have lots of materials online. We’ve also co-produced a number of resources based on our data and in collaboration with young people and parents. So we’ve got a number of self-help guides on our Web pages and we’ve also got three short animations. One for medical and social care practitioners. One for teachers, because they’re so important in terms of the day-to-day lives of these children and safe people they can talk to and for parents and carers as well.

Interviewer: Sarah, in your findings only a small percentage of children and young people seek help for voice related distress. Why is that? What are the barriers that prevent young people from seeking help and support?

Dr. Sarah Parry: This is a really important one, and we heard from so many young people and parents as well that they are so anxious about going to their family doctor or to children’s mental health services in case they’re diagnosed with something that they find quite anxiety provoking, like schizophrenia, psychosis. Some of the 15, 16, 17, 18 year olds we heard from were really worried about what medication they might be prescribed.
So there seemed to be a real connection that young people were drawing between the experiences they were having and really significant mental health interventions, and like I say, most young people who experience unusual sensory experiences won’t receive a diagnosis of a mental health condition. The prevalence rate since early onset psychosis are really small.
Unusual sensory experiences can exist outside of mental health construct but these were clearly big barriers for a lot of the young people that we heard from, and actually the only group who were more likely than not to seek mental health support were young people who identified as non-binary in gender. Girls are proportionately more likely than boys to seek mental health support for voice hearing, although fewer do than don’t.

So overall the picture was that a relatively small number actually had sought mental health support for hearing voices, which was surprising because we largely recruited through National Health Service contacts and organisations in the community, like Voice Collective. So it may actually be that if we were to do that piece of research again and largely recruit, say, through social media, it may be that that number would be even lower.

Interviewer: Given that fear then of a diagnosis of schizophrenia or psychosis related disorders, what determines whether voice hearing in children, in young people is related to psychosis related disorder?

Dr. Sarah Parry: It’s a bit of a tricky one in that the construct of psychosis in childhood and adolescence is not particularly clear. So psychosis is characterised by hallucinations, delusions and a disturbed relationship with reality or a disconnection to reality. It’s often largely characterised by the significance of the distress and the impact on functioning in a young person’s life, but that in itself is still not massively clear. You know, we all have good days and bad days. There are lots of things that can influence somebody’s connection moment to moment with reality.

To, kind of, take one extreme boredom in the classroom. It’s fairly likely to help a young person disconnect from the reality of what’s happening around them and they day-dream about something more interesting. I think it’s important to remember that continuum here. So psychosis is up the far end. You know, there are lots and lots of experiences along that continuum with imaginary friends perhaps being down the other end that have much more to do with how somebody is perhaps coping through a stressful period.

Perhaps if somebody is very worried about somebody close to them. If somebody is experiencing bullying. If somebody struggling to transition to a new school. If somebody is perhaps really struggling with their self-esteem or confidence. Yeah, there are so many factors that can lead to any of those things around sensory experiences out of the here and now.

So it’s a really tricky one where perhaps, you know, maybe more problematic unusual sensory experiences meet psychosis. I think there’s perhaps quite a way to go yet in terms of delineating that, but I think maybe the question would be how useful is it to diagnose a child with psychosis, given that that diagnosis could increase their anxiety and it doesn’t necessarily mean they’d be able to access evidence based interventions because the evidence based around childhood psychosis is so small anyway. So it may be more helpful to ask, you know, where might these sensory experiences have come from and why.

Interviewer: Let’s look at interventions then. So if a young person does seek help for voice related distress or sensory experiences, what are they likely to be offered and what interventions are shown to work?

Dr. Sarah Parry: So, again, this is a bit of a tricky one in that there aren’t specialist services as such for children under the age of 14 in the UK. So some of this will come down to who they see. Whether or not they have a particular interest or expertise in this area, and since we started this research I’ve heard from a number of child adolescent mental health practitioners saying they wish there was actually more guidance and more support for them in terms of how to help.

Sometimes children will be offered talking therapies which can be very effective, especially if we think about those social and emotional and psychological underpinnings of why a young person may have unusual sensory experiences or hear voices. Some who would argue for the case of having antipsychotic medication available, and again this is very much down to individual choice. Some young people say that that’s helpful. Others say it’s not, and family intervention and family therapy can be very beneficial, but again it’s the case of whether or not resources permit that within often very stretched services.

Interviewer: Sarah, you mentioned bullying earlier and your study finds that distressing voices can be triggered by adverse experiences, such as bullying and trauma. Can you explain how these kinds of factors may precipitate sensory and voice hearing experiences in children and young people?

Dr. Sarah Parry: I suppose we’re at the stage, as many are in this area, in that we’re kind of inferring information from across a number of fields here, and this is definitely an area that I’d like to explore in more detail. In that I think some of the results that we found and report in our CPP paper highlight that there are perhaps some societal and intersectional aspects that we need to understand in a lot more detail. For example, 63% of the girls who took part in our study reported only experiencing negative or distressing voices. Whereas only 33% of boys reported only negative voices, and actually 58% of boys reported positive and comforting voices only compared to just 11% of girls.
And the work of Maria Harmon is really interesting here in that she worked with 44 women who were diagnosed with schizophrenia to explore how societal intersections worked to either undermine or affirm voice hearers, people who have voices, and overall she found that the women’s voice hearing experiences were adversely influenced by structural inequalities in society, especially for women from ethnic minorities.

So their voices undermined them based on societal inequalities, and I do wonder if our data highlights maybe a similar process for girls, which is really concerning from a socio-emotional perspective and could have big implications how families, schools, mental health services and society supports girls with unusual sensory experiences. If perhaps exposure to social inequalities is perhaps leading them to have a particularly negative set of unusual sensory experiences, which does seem very different to what the boys in the study were reporting.

I think this is where having longitudinal larger scale data would be really, really helpful to try and unpick some of those factors and to look particularly at what factors are influencing young people at perhaps different developmental stages and why in much more depth and appreciative of all the nuance along with that.

Interviewer: Were there any other findings that emerged from your research that you’d like to share?

Dr. Sarah Parry: I think one of the really key things that we’ve perhaps not discussed so far is just the sheer range of experiences and who children choose to confide in. So we actually heard from a lot of young people that they had spoken with friends who also had perhaps their own mental health challenges and siblings, and these weren’t other young people who hear voices. These were young people who our participants had just identified as perhaps empathic, safe people to confide in.
A number of young people that we heard from said that they were deliberately not telling their parents because they didn’t want them to worry and they didn’t want to perhaps, you know, add stress to the family.

So a minority had teachers and it had fair to say a range of experiences, positive and negative in terms of the support that they’d had there. A lot had spoken with other young people, and again this is an area that has just not really been explored in much detail in the literature and it could be really important, because actually if young people are getting really beneficial support from other young people who may not share their exact experiences but can certainly empathise with what they’re going through, then that could be really interesting to explore more in terms of what community and peer support could do in terms of providing additional intervention at the community level.
Interviewer: Do you think there needs to be far more education and awareness around voice hearing amongst health professionals and educators?
Dr. Sarah Parry: Absolutely, and I think there’s a real appetite for it as well. You know, many of the CAMHS practitioners that we’ve heard from really want more information and more resources to use in this area for these young people, and I think there’s a lot that can be done across the general public in terms of sharing information, raising awareness, reducing stigma, and essentially helping people skill-up to support young people who are having these experiences because, as I say, you know, if these young people are met with reassurance and comfort and with somebody who can help normalise their experience and to help them develop their own understanding and develop their own meaning making around the experience, then their future is likely to look much brighter and they’re likely to feel much less anxious and more in control of the experiences that they’re having.

Interviewer: Sarah, what else is the pipeline? Are you planning some follow up or future research that you can reveal to us?

Dr. Sarah Parry: We’re currently seeking funding for a number of follow on projects from this. One particularly to work with girls and young women around their experiences of unusual sensory experiences and seeking support. We’re also working currently with parents and mental health service providers and young people to look at maybe what brief interventions could be delivered through child and adolescent mental health services so that children and parents are able to access suitable support when they are referred to mental health services. So that they’re not waiting around for months and months trying to get some help and support.
And really the brief intervention would provide the skills training and emotional support so that hopefully young people don’t need lots of contact with clinics and so on, so that they can make their own meaning and cope with any challenging voices and other experiences at home.

Interviewer: And finally, Sarah, what is your takeaway message for those listening to our conversation?

Dr. Sarah Parry: My takeaway message would probably be what it normally is in terms of please be reassured that these are not that unusual, even though we call them unusual sensory experiences. So many people have voices and visions and other experiences in their younger years, and there’s a whole host of reasons why we think these experiences may occur at some times for some people. There is information available. There is support available. So please do look up the information that we’ve developed with young people and families online, and I hope it’s helpful to anybody that may be supporting a young person or any young people listening to this who identify with these experiences.

Interviewer: Fantastic. Sarah, thank you so much. For more details on Dr. Sarah Parry please visit the ACAMH website www.acamh.org and Twitter at ACAMH. ACAMH is spelt ACAMH, and don’t forget to follow us on iTunes or your preferred streaming platform. Let us know if you enjoyed the podcast with a rating or overview and do share with friends and colleagues.