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NEON Trials: Frequently asked questions

What are the NEON trials?

The NEON trials are three trials of an interactive website called the NEON Intervention which provides access to a collection of online mental health recovery stories. You can read more about the trials here: https://www.researchintorecovery.com/research/neon/neontrials/. Collectively, the trials are looking at whether access to the NEON Intervention can help people affected by mental health problems. If you sign up to a trial, you will fill out some trials questionnaires, and then obtain immediate or delayed (one year) access to the NEON Intervention.

Do I need a diagnosis to sign up?

The NEON Trial and NEON-O Trial include people with experience of mental health problems in the last five years, but you don’t need to have received a diagnosis, and you don’t need to be using any kind of mental health service. Many people experience and recover from mental health problems without either, and we want to keep our trials as inclusive as possible. We actively encourage participation from people who reject the concept of diagnosis.

Do I need to visit a health centre if I sign up?

Our trials require no face-to-face contact at all. Everything is done online, and everything can be done from the comfort of your own home, through a smartphone, or using a shared computer such as in a public library. As long as you have access to the internet, you can take part.

Are there any restrictions on the web browser that I can use?

The NEON Intervention works on all modern web-browsers, but doesn’t work on Internet Explorer. This is because Internet Explorer is now out of date with modern security standards, and hence it wouldn’t be appropriate for us to allow its use.

When will trial registration close?

Our trials completed recruitment on 26th March 2021.

Will my experience of psychosis make me eligible for the trial?

We have adopted a broad definition of psychosis so as to be inclusive as possible, and don’t require a formal diagnosis to take part. We are keen to include people in the NEON trial who have had a variety of psychosis-like experiences in the last five years. If you are an adult with capacity living in England, would define your own experiences as ‘psychosis-like’, and have experienced any form of mental health distress in the last 6 months, then you will be able to take part in the NEON Trial.

I am an adult carer of someone who is under 18. Am I eligible for the NEON-C Trial?

Yes, you are eligible. The age of the person you are caring for does not impact your eligibility.

I am a carer for someone with dementia. Am I eligible for the NEON-C Trial?

If the person you are caring for has also experienced any kind of mental health distress, such as anxiety or depression, which we know to be common in dementia, then you would be eligible.

How long will it take me to receive a voucher for completing questionnaires?

Only people who are allocated to the NEON Trial, for people with experience of psychosis, will receive a voucher for questionnaire completion. If you have been allocated to the NEON Trial, we will aim to send your voucher within five working days of completing questionnaires. Please note this may take slightly longer during public holidays and busy periods.

Will voucher payments received through the NEON Trial affect my benefits?

Sadly, Department for Work and Pensions regulations around benefits change quite regularly, and as a research study we’re not allowed to offer any advice about payments in case we make a mistake. You might be able to ask the Department for Work and Pensions directly, and you don’t have to request a voucher if you don’t want to.

How can I reset my account password?

You can reset your account password at https://recoverystories.uk/reset

I’m a carer taking part in the NEON-C Trial – should I answer the trial questionnaires from my own experiences or those of the person I care for?

Please answer as best you can, from your own experiences. We understand that some questions may not feel like a perfect fit for carers, and we will be building on what we learn from the NEON-C Trial to conduct a larger and more specialised trial for carers in the future. If there are specific questions that feel inappropriate, please let us know by emailing neon@nottingham.ac.uk so that we can improve them in a future trial.

My answers to questions in the trial questionnaires will be different due to COVID-19. Should I answer as I am now (during the pandemic), or as if the pandemic had not happened?

Please answer as you are now, with the present situation in mind. If everyone does the same, this controls for the impact of COVID-19 on our analysis.

We are thinking carefully about the impact of COVID on the questionnaire data we collect. It will have an impact on all of the data we gather, and we are working on an analysis plans that takes account of it. One strength of randomised controlled trials, and particularly trials as large as ours, is that on average, societal situations like COVID-19 will have a roughly equal impact on people who receive the intervention immediately and after one year, and hence we’re not concerned that it will damage our understanding of whether our intervention helps or not.

None of the responses to questions in your questionnaires truly match me

It is the nature of clinical trials that we often have to use standardised tools for collecting questionnaire data, and these can sometimes feel like a poor match. Please select the answer that is closest to your current situation. If something does not match you then you could let us know through neon@nottingham.ac.uk and we can use this information to try and influence how future trials are conducted.

Can you provide stories in alternative formats?

We decided early in the NEON study to present stories exactly as produced by the people who created them, so as to respect the decisions that they had made about their own story. This means that we can’t provide stories in alternative formats. However, some of our stories have been provided to us in both written and audio form, and both are included in the NEON Intervention.

Why isn’t NEON an app?

For our trials, we chose not to do this for a number of reasons. To allow for widespread participation, we would have had to create and maintain two apps, one for Android and the other for iOS. This would have been beyond the scope of study resources. Distributing NEON only as an app would have excluded participants who didn’t own a smartphone, which we didn’t want to do. We were also uncertain whether people would primarily use a smartphone or web-browser to access NEON. As we make plans for NEON to live on beyond the end of this study, then we will revisit this choice.

Why am I being offered a £20 voucher for my final questionnaires?

We’re now able to offer all NEON trials participants a £20 voucher, when you submit your final set of questionnaires. You’ll be asked to complete the questionnaires one year after you signed up to a trial, and will receive information at that point about how to claim your voucher.

If you are a participant who has already completed a year and submitted your questionnaires – you are included too! We will get in touch with you with more information about this shortly.