Improved access to treatment choices for children and young people with multisensory hallucinations

Special Interest Research Group

Uniting Senses and Experiences Network

Around 1 in 5 children has multisensory experiences such as visions, smells, intrusive thoughts, felt presences and other sensory features that are not experienced by others.

By integrating learning from young people, parents/carers, practitioners and researchers, our Special Interest Research Group will collaboratively identify research priorities for improving understanding, support and care. Thereby promoting positive change for these young people.

In January 2021, we were fortunate enough to be awarded funds by Emerging Minds to develop a new network to explore research priorities with and for young people with sensory experiences such as hearing voices or seeing visions others don’t, felt presences of others, or the feeling of more than one self in the body.

We held online consultation events with young people with lived experience, parents, teachers, mental health practitioners and researchers.

One of the first challenges we tried to address was what to call our network, as the language representative of voice hearing and other sensory experiences can be loaded with stigma, negative connotations and assumptions. We heard from young people how they had made sense of their experiences and developed a vocabulary individual for them that helped them discuss their experiences with others. Drawing on these rich experience-led lexica, we asked young people involved in the consultations to help us develop a name for the network, which they advised should be: The Uniting Senses and Experiences Network (USEN). You can follow the network on Twitter @USENResearch.

Challenges Accessing Mental Health Support

We heard directly from young people about the challenges they had experienced in trying to access mental health support, which are summarised in the illustration below, developed by Emma Paxton with funds provided by Emerging Minds. Click to enlarge, or you can also download the image as a PDF.

What would good support look like & include? For young people with multi-sensory experiences: Understand - That it's really hard to articulate what I'm experiencing, - Professionals are DAUNTING - I've had BAD EXPERIENCES with professionals - It's so easy to MISINTERPRET what I'm saying - Listen, don't dismiss me off-hand - two-way support - equally listened to & heard. Silence can be powerful - time to think. Give me time & space - a private place. Don't make me feel I'm a burden. Ask me - do you want comfort or a solution? Be human - humility. Not having to tell my story over & over to ever changing professionals - Actually HELP me - don't try to convince both of us that you are. Don't panic if you don't know the answer, just say so. Don't just offer QUICK FIXES that I've heard before - & use these already - picture of plaster. Someone who BELIEVES me. Not having to TAKE CARE of the PROFESSIOAL when they're shocked by my story. HELP ME - I shouldn't have to get REALLY ILL before I get SUPPORT. MANY CHILDREN HEAR VOICES OR SEE VISIONS OTHERS DON'T OR HAVE OTHER UNUSUAL SENSORY EXPERIENCES OR BELIEFS. — What would good support look like & include? For young people with multi-sensory experiences: Understand – That it’s really hard to articulate what I’m experiencing, – Professionals are DAUNTING – I’ve had BAD EXPERIENCES with professionals – It’s so easy to MISINTERPRET what I’m saying – Listen, don’t dismiss me off-hand – two-way support – equally listened to & heard. Silence can be powerful – time to think. Give me time & space – a private place. Don’t make me feel I’m a burden. Ask me – do you want comfort or a solution? Be human – humility. Not having to tell my story over & over to ever changing professionals – Actually HELP me – don’t try to convince both of us that you are. Don’t panic if you don’t know the answer, just say so. Don’t just offer QUICK FIXES that I’ve heard before – & use these already – picture of plaster. Someone who BELIEVES me. Not having to TAKE CARE of the PROFESSIOAL when they’re shocked by my story. HELP ME – I shouldn’t have to get REALLY ILL before I get SUPPORT. MANY CHILDREN HEAR VOICES OR SEE VISIONS OTHERS DON’T OR HAVE OTHER UNUSUAL SENSORY EXPERIENCES OR BELIEFS.

Priorities from Young People and Families

From our consultations, we heard that the following were the priorities young people and families wanted to see:

Working Towards these Priorities

In response, we have a number of funding applications currently under review to begin projects in these areas, which focus on trialling new approaches for young people with sensory experiences and their families.

With support from Emerging Minds, we were also able to fund a meme workshop, hosted by Sarah Morgan of Voice Collective. The young people involved developed an online catalogue of memes they felt resonated with their experiences, which is available here (padlet).

As a team, we are also working with colleagues and trainees in mental health to supervise doctoral thesis projects that are contributing novel primary and secondary research to address some of the research questions that arose during the consultation process.

Being a part of the Emerging Minds network has offered support, comradery, encouragement, connections with people across the UK, and so much more. Emerging Minds has helped us learn what seeds need planting and support to grow to advance support for young people with multisensory experiences, and we are very grateful for the opportunities Emerging Minds has afforded us.

Developing the LIVV App

An exciting collaboration that has arisen from our initial consultations has been with the Hearing the Voice team at Durham University. Hearing the Voice is a large interdisciplinary study of voice-hearing led by researchers at Durham University and funded by the Wellcome Trust.

Over recent months, Ben Alderson-Day and Victoria Patton have been leading the development of the LIVV App, which we know from our consultations is a much wanted and needed resource for young people who hear voices. App development has been funded so far through the Research Impact Fund of Durham University and an ESRC Impact Acceleration Account.

The development process has involved extensive co-production with young people with lived experience of voice hearing. With thanks to Emerging Minds funds, we are hoping to gather user feedback and insights on the prototype, with a view to progressing to a trial stage. In this way, the views and wishes of young people have directly informed our plans and actions.

Through our research to inform the planning process, we have learnt that children and young people often view digital health interventions as beneficial to accessing mental health support due to increased privacy and anonymity, increased flexibility, and reduced pressure to engage at specific time points. The self-directed nature of digital health platforms can enable young people to feel more connected to the intervention, along with the delivery being seen as more accessible compared to face-to-face counselling (Hollis et al., 2017).

Digital health interventions that include peer support, such as Moderated On-line Social Therapy are viewed particularly positively by young people, who can benefit from hearing about other people’s lived experiences (Alvarez-Jimenez et al., 2020). Consequently, the LIVV App with eventually connect with an online platform hosted by Voice Collective to offer a peer space for peer connection and support.

We have also learnt that future digital interventions would benefit from individually tailored interactive psychosocial interventions (Alvarez-Jimenez et al., 2020; Hollis et al., 2017) and the young people who have been involved in the development of the LIVV App have provided helpful advice on providing and tailoring coping strategies, depending upon the individual needs of the young person engaging with the App.

Increasingly, digital platforms, including apps, are being trialled as an adjunct to clinical support, often known as blended therapies. Given the challenges the young people we have heard from have experienced in terms of gaining access to helpful, timely mental health support, the LIVV App could offer a welcome source of helpful and accessible information for young people as they begin to make sense of their experiences and find ways to cope. Overall, it has been suggested that digital platforms are a viable and accessible source of support for many young people, particularly those with voice hearing experiences, and we hope the LIVV App will go from strength to strength.

Thank you to Emerging Minds and to everyone who has been a part of our Emerging Minds story, from Paul French, Fiona Malpass, Sarah Morgan, Zarah Eve, Abby Connelly, Victoria Patton and Sarah Parry.

References

Alvarez-Jimenez, M., Rice, S., D’Alfonso, S., Leicester, S., Bendall, S., Pryor, I., Russon, P., McEnery, C., Santesteban-Echarri, O., Da Costa, G., Gilbertson, T., Valentine, L., Solves, L., Ratheesh, A., McGorry, P. D., & Gleeson, J. (2020). A novel multimodal digital service (Moderated Online Social Therapy+) for help-seeking young people experiencing mental ill-health: pilot evaluation within a national youth e-mental health service. JMIR Medical Internet Research, 22(8), e17155. https://doi.org/10.2196/17155

Hollis, C., Falconer, C. J., Martin, J. L., Whittington, C., Stockton, S., Glazebrook, C., & Davies, E. B. (2017). Annual research review: digital health interventions for children and young people with mental health problems – a systematic and meta-review. Journal of Child Psychology and Psychiatry, 58(4), 474-503. https://doi.org/10.1111/jcpp.12663