Authored by clinical psychologists and researchers Dr Sarah Parry and Dr Filippo Varese and research assistant Rachel Djabaeva.
Somewhere between “a great friend”, “scary” and “hard to explain”
Learning from young people and parents about hearing voices
Over recent months, we have been working with young people hearing voices and their parents/guardians to understand more about the experience of voice hearing, how young people talk about the voices, and what families need from services. Our research is still at an early stage and we are keen to hear more, so please do contact us if you could share your story (contact details at the end of the article).
Hearing voices is a relatively common experience during childhood and does not usually cause distress **https://theconversation.com/parents-dont-panic-if-your-child-hears-voices-its-actually-quite-common-78964**. Around one in twelve young people hear a voice or voices at some stage during their youth and the experience is often not a sign of wider mental health difficulties.
Our early findings suggest that young people are often very anxious about telling others that they hear voices, for fear of their reactions. Some of the young people who have shared their experiences with us have explained that their stories were met with confusion, disbelief or fear, which caused them, and in one case the voices, further fear and isolation.
It seems that many of the young people and parents we have heard from are keenly aware of the stigma around such experiences, driven by traditional medical model terms such as “mentally ill” and “schizophrenia”, often associated with voice hearing. However, these terms do not capture the function or role of voices, or what the voices mean for young people. These medico-cultural narratives are one of the main reasons why young people and parents may fear speaking out and prevent them seeking advice or support.
Therefore, children tend not tell their parents/caregivers that they are hearing voices, or if they do, it is not straight away. Parents often find out much later, when they notice changes in their child’s behaviour, such as having “conversations with ‘no-one’”, limiting communication with their parents, or showing unusual signs of distress and fear, which can ultimately result in the young person becoming increasingly isolated.
Our preliminary findings also suggest that parents of children who hear voices are experiencing unique daily stressors associated with their child’s voices such as isolation, fear and the feeling of not being understood or listened to. That is, both the parent and young person seem to share parallels in their experiences of anxiety and loneliness, as a result of unhelpful narratives around perceived ‘mental illness’ in association with voice hearing. For example, one mother who responded to our online survey commented, “Symptoms of stress, anxiety and trauma can occur in parents going through this experience so it’s vital that there’s more education, openness, acceptance and support.”
What do parents of young voice hearers want?
1. Online advice and support
Thanks to organisations such as the Voice Collective ** http://www.voicecollective.co.uk/support/parents-carers/** and the Hearing Voices Network ** https://www.hearing-voices.org/ **, online support for parents ** http://www.intervoiceonline.org/3393/news/free-booklets-for-parents.html** and young people who hear voices ** http://www.voicecollective.co.uk/** is now available.
Connecting this information to health services and getting helpful non-stigmatising messages into the public arena is the next challenge. Many of the young people we have heard from view the voices as helpful and comforting in times of distress. In other words, the voices can actually support wellbeing, rather than be a ‘symptom’ of mental health difficulties. For instance, when asked ‘what do you like about hearing voices?’ one young person replied, “Support, guidance, motivation, friendship, understanding, the list goes on.” One of our hopes for this research is that the stories young people share will increase understanding about voices and reduce the surrounding stigma.
2. Direct support for parents and siblings
Sadly, in many countries, face-to-face support for young people often comes with lengthy waiting times and direct support for parents and siblings is scarce. Parents who responded to our survey talked about their need to talk to other parents going through similar experiences, either in person or through forums. Across our responses so far, parents do not seem to feel supported by traditionally trained healthcare providers working within medical model services.
3. More awareness around sensory experiences
Some parents talked about how their General Practitioner and local child and adolescent mental health services could offer little comfort or reassurance. The traditional perspective of voice hearing as being something scary and unusual still seems to be the main message issued by services. People replying to our survey have requested tailored information and an open platform for discussion around voice hearing.
4. Reassurance as to what may lie ahead, helpful support strategies and psychoeducation
The recommendations around information sharing information have varied from developing “children’s books that we could have read together, where hearing voices was an integral part of the story” to “a professional forum” through which parents can ask questions and seek advice. Parents are also keen to have further support around when the voices may become problematic. Many of the parents who kindly shared their experiences discuss how they recognise the voices are supportive in many instances for their child, although worry about when they should seek further help. This level of nuanced information is partly what we hope to achieve through our study.
The study also provides young people and parents with a platform to offer advice to others in similar situations, with a view to offering personal advice and, collectively, to inform service development and shape service delivery. The main advice from parents to other parents has been developed into an initial set of ‘top tips’ for Mad in America, although a key point has been to “Take a day at a time.”
It is crucial that parents and young people who hear voices are given a platform to inform a new narrative around the experience that is curious, accepting and evidence-based. Through working together with parents, young voice hearers and expert-by-experience groups, it is increasingly possible to create a new and informed social narrative around voice hearing during childhood and how it can often be a coping strategy through difficult times, rather than a sign of ‘illness’.
If you might consider talking to the team about your experiences of hearing voices during childhood and are between 10 and 18 years of age, or as the parent/carer of a young person who hears voices, please contact: firstname.lastname@example.org
Alternatively, you can complete our online survey:
• Link for children and young people: www.mmu.ac.uk/hearing-voices-children
• Link for parents/guardians: www.mmu.ac.uk/hearing-voices-parents
Remuneration for travel expenses and childcare is available for people wishing to discuss experiences during an informal interview for research purposes.