CompletedInterventional

NEON-C: Trial to test the feasibility of providing online recorded mental health recovery stories to people with experience of caring for people with mental health problems

Caring for a friend or family member with mental health difficulties can be rewarding, but it can also be emotionally draining and lonely. The NEON-C study is testing an online resource designed specifically to support informal carers. Participants get access to a secure website containing hundreds of real stories from people who have experienced mental health challenges and recovery. These stories are available as text, audio, and video. Half of the participants receive access straight away, while the other half receive access after one year. Taking part is entirely online and takes place over 12 months. You will complete four short surveys about your well-being, and your feedback will help researchers decide if this tool should be offered widely across the NHS to support carers in the future.

At a glance

Status

Completed

Sponsor

Nottinghamshire Healthcare NHS Foundation Trust

Enrolment target

100

Start

09 Mar 2020

Estimated completion

26 Mar 2021

Mental health

What is this study about?

Supporting someone through mental health struggles is an essential role, but carers often feel overlooked and isolated. The Narrative Experiences Online (NEON) project was created to find out whether hearing personal stories of hope and recovery can make a positive difference to everyday life.

In this study, known as NEON-C, researchers want to see whether access to an online library of personal recovery stories helps carers feel more supported. These recorded stories describe how others have coped with mental health challenges, found ways through difficult times, and rebuilt their lives. The stories come in different formats, including written articles, audio recordings, and video clips.

Because this is a feasibility study, researchers want to learn how easy and practical the website is to use before launching a larger national trial. Taking part helps the team understand what works well and what could be improved, ensuring future NHS carer support programmes are as helpful and accessible as possible.

Key takeaways

NEON-C is testing an online collection of personal mental health recovery stories for unpaid carers.
Participation takes place entirely online over a 12-month period.
Half of participants get immediate access to the stories; the other half get access after one year.
You will complete four online check-ins about your feelings and well-being during the year.
The person you support does not need to have a formal diagnosis or be in NHS treatment.
Taking part is completely voluntary and you can withdraw at any time.

Who may be eligible?

You may be able to join this study if you are 18 or older and have informally cared for a friend, partner, or family member with mental health challenges within the last five years. You do not need to be a paid or registered carer. The person you support does not need to have a formal medical diagnosis or be receiving treatment from mental health services.

To take part, you must be comfortable reading and understanding English, and you need regular access to a smartphone, tablet, or computer with an internet connection (help from someone you know to use the device is fine).

You cannot take part if you are currently using mental health services for your own health, or if you are already taking part in another related NEON clinical study.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I am aged 18 or older.
I have provided unpaid support to someone with mental health struggles in the last 5 years.
I can understand English and have internet access via a phone, tablet, or computer.
I am not currently receiving care from mental health services myself.
I am not already enrolled in another NEON study.

Answer every question to see your result.

What does participation involve?

Taking part in NEON-C lasts for one year and is done completely online from home. There are no clinic visits, hospital appointments, or medications involved.

When you sign up, a computer system randomly places you into one of two groups. One group gets immediate access to the NEON website and its library of stories. The other group is put on a waiting list and receives full access after 12 months. If you have immediate access, you can use the website as often or as little as you like.

Both groups will be asked to fill in an online questionnaire at four points during the year (at the start, and then roughly every few months). These surveys ask about your mood, quality of life, and feelings about caring. A small number of participants may also be invited to take part in an optional interview to share deeper feedback about their experience.

Potential risks and benefits

Many people find that hearing other people's recovery stories brings comfort, renewed hope, and a sense of connection. Your involvement will also help researchers build better digital tools to support carers in the future. However, reading or listening to honest personal accounts of mental distress can sometimes feel emotionally heavy or upsetting. Some stories discuss difficult subjects such as self-harm. You can stop using the website at any time, take breaks, or skip topics you do not wish to view. Taking part is entirely voluntary, and you are free to withdraw from the study whenever you choose without giving a reason.

Locations (12)

Nottinghamshire Healthcare NHS Foundation Trust
City only
Nottingham, England
Sussex Partnership NHS Foundation Trust
Approximate
Worthing, England
Lincolnshire Partnership NHS Foundation Trust
Approximate
Lincoln, England
East London NHS Foundation Trust
Approximate
London, England
South London and Maudsley NHS Foundation Trust
City only
Beckenham, England
Derbyshire Healthcare NHS Foundation Trust
Unverified
Derby, England
Devon Partnership NHS Foundation Trust
Unverified
Exeter, England
North East London NHS Foundation Trust
Unverified
Rainham, England
Oxford Health NHS Foundation Trust
Unverified
Oxford, England
Leicestershire Partnership NHS Trust
Unverified
Leicester, England
Cornwall Partnership NHS Foundation Trust
Unverified
Bodmin, England
Somerset Partnership NHS Foundation Trust
Unverified
Bridgwater, England

Common questions

Do I have to travel anywhere for this study?

No. The entire study is conducted online, meaning you can take part from home using your computer, tablet, or smartphone.

What is an informal carer?

An informal carer is anyone who provides unpaid support, care, or practical help to a family member, partner, or friend who is dealing with mental health difficulties.

Does the person I support need a formal diagnosis?

No. The person you care for does not need an official diagnosis or treatment plan for you to be eligible for this study.

What happens if I am placed in the delayed access group?

You will still complete the four online questionnaires during the year to help the research team. Once your 12 months in the study are complete, you will be given full access to all the stories.

Can I leave the study if I find the stories upsetting?

Yes. You have complete control over your participation and can step back, take a break, or leave the study permanently at any time.

How to find out more

Stefan Rennick-Egglestone

stefan.egglestone@nottingham.ac.uk +44 (0)115 82 30926 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.