Research into Recovery and Wellbeing

A website about the work of the recovery research team at the Institute of Mental Health

The University of Nottingham

Frequently Asked Questions

The study team is continuing to develop a list of responses to frequently asked questions. If you have a question which is not on this list, please contact the study coordinator, Stefan Rennick-Egglestone, using stefan.egglestone@nottingham.ac.uk.

Ethics and Oversight

Who is funding the NEON Study?

The National Institute of Health Research (NIHR) has funded the Narrative Experiences Online (NEON) Study through its Programme Grants for Applied Research (PGfAR) scheme (funder reference RP-PG-0615-20016).

Who is involved in the NEON Study?

The NEON team members are listed here.

Does NEON have ethical approval?

Yes. Phase 1 has received ethical approval (REC Reference: 17/EM/0401). The work of phases 2 and 3 will be submitted for ethical approval before work begins.

 

NEON Phase 1 - Learning about recovery stories

What does Phase 1 involve?

120 people will meet with local NEON researchers to share their mental health recovery stories, followed by a short interview.  These meetings will be audio or video recorded, depending on the wishes of the individual.  

When and where will these interviews take place?

Meetings will take place at a time and date convenient for the person taking part.  The location will be decided depending on individual preferences. Travel costs (and a £20 thank you for participating) will be reimbursed.

Who are you interviewing?

Researchers will be interviewing people from four groups:

Group A: People who have had experiences of what can be called “psychosis”, or have had experiences that others see as unusual (hearing voices, seeing things that others do not).  Members of this group will not have been in contact with mental health NHS services (other than their GP) during the last five years. 

Group B: People in London who are from black or minority ethnic communities and have experienced mental health challenges. 

Group C: People in Nottinghamshire who have experiences of mental health challenges and who are currently under-served by mental health services.

Group D: People in Nottinghamshire working in an unpaid or paid role where having had personal experiences of mental health difficulties is an essential job requirement, such as peer support worker, peer trainer or involvement worker. 

How can I volunteer to be a participant?

Please use the following email addresses to contact the research team:

Group A: rose.mcgranahan@qmul.ac.uk

Group B: amy.ramsay@kcl.ac.uk 

Group C: joy.beardsley@nottingham.ac.uk and kate.morgan@nottingham.ac.uk

Group D: joy.beardsley@nottingham.ac.uk and kate.morgan@nottingham.ac.uk

Why do you want to interview these particular groups? 

These four groups are currently under-researched so it is important that we increase our understanding of  their experiences. 

If I'm not part of one of these groups, can I still be involved?

If you would like to take part in research but are not part of one of the four NEON recruitment groups, please keep an eye on our recruitment page here for other opportunities to be involved.

 

NEON Phase 2 - Developing the interventions

What does Phase 2 involve?

In Phase 2, the NEON team will build on Phase 1 to design two interventions.

1. The main focus will be on developing the NEON Intervention, an on-line self-management tool which matches recovery stories to people experiencing psychosis. The NEON Intervention will be evaluated in phase 3 of NEON.

2. We will also develop an online training intervention for mental health professionals, to increase their expectations that recovery is likely for people with psychosis. We do not have funding  to evaluate this intervention for staff

Both interventions are intended for use in the National Health Service and in health services in other countries.

The team will collect and organise a large and diverse range of recovery stories, working with both existing providers and people who want to share their story.

We will then investigate how to identify which story is most likely to be of benefit to an individual. Our understanding of the matching process will be informed by research into machine learning research, and will use two approaches:

a) the design and evaluation of a scale which can be used to reliably characterise a recovery story

b) a study in which participants are shown recovery narratives, and then interviewed to understand how the narratives are experienced.

NEON will also be working with health service professionals to understand opportunities for using these stories to benefit people, and how potential barriers to the use of recovery stories can be overcome.

When and where does Phase 2 take place?

The main body of work in Phase 2 is planned to take place between August 2018 and March 2019. Most research will take place in Nottingham.

What is the NEON Collection?

This is a a collection of recovery stories intended for use in the NEON Intervention. Stories in the NEON Collection have either been donated by organisations who have collected their own stories, or by individuals who have given their story to the study.

How might the NEON Collection help people?

The NEON Collection will be one of the largest and most heterogeneous collections of recovery stories in the world. NEON will evaluate two routes to helping people:

  • Providing people who experience mental health problems with direct access to recovery stories, so that they can learn and benefit from the experiences of others
  • Using recovery stories to raise mental health staff awareness of the possibility of recovery, and how it can happen and be supported

Can I submit my story to the NEON Collection?

Yes, we anticipate that people will be able to submit stories to the NEON Collection. However, we are currently defining processes for how the collection will work, and once these are finalised, we will need to seek approval from the relevant authorities for the work of curating it. As such, we cannot provide precise details at this point, but will update this FAQ once details are available.

 

NEON Phase 3 - Evaluating the NEON self-management tool

What does Phase 3 involve?

In Phase 3, the NEON team will evaluate the NEON Intervention (the on-line self-management tool designed in Phase 2). This will involve a short feasibility study, and then a randomised clinical trial involving more than 650 participants.

Who is the NEON Intervention for?

It is being developed for use by people living with psychosis (e.g. schizophrenia). However, it will also be available for (i) people who previously but not currently had psychosis, (ii) people living with other mental health problems, and (iii) family / friend supporters.

When and where will the NEON Trial take place?

The NEON Trial will evaluate an online intervention , so people living anyone anywhere in the UK will be able to participate.