The following are our current definitions of key terms that we use in our research. We’ll be updating these as our programme of work develops.
Mental health problems
Emotional or psychological difficulties which impact on a person or those around them. These may be described by a diagnosis made by a professional against a set of diagnostic criteria (e.g. depression, schizophrenia), or they can be self-defined without a formal label.
A group of mental health problems in which people may hear voices, believe things that others may find strange, or appear out of touch with reality. The most common psychosis diagnosis is schizophrenia; psychosis can also occur during the “up” phase of bipolar 1.
In NEON our focus is on recovery for people with psychosis experiences, but we are also considering recovery stories across the spectrum of mental health problems.
Mental health service
A service providing support to people with mental health problems, including primary care counsellor, IAPT, mental health teams and in-patient services. Excludes GPs (family doctors), charities (other than those commissioned to deliver public/statutory services) and private therapists.
A person who uses mental health services beyond seeing their GP.
Knowledge gained through direct personal experience of mental health problems rather than knowledge gained indirectly, e.g. through clinical training.
Recovery is the process of living as well as possible, as defined by the individual, with or without continuing to experience mental health problems.
In NEON we use the term ‘recovery’ specifically in relation to people with personal experience of mental health problems (whilst recognising the term is also used in other areas, e.g. addictions, cancer).
A story told by a person about their journey of recovery.
In NEON we are using recovery stories which are first-person lived experience accounts, include elements of both adversity/struggle and of strength/success/survival related at least in part to mental health problems (i.e. is about recovery), and which refer to events or actions over a period of time (i.e. is a story). We include stories where the positive aspects may be a very small part to a very large part of the story, and (drawing on Thornhill et al, 2004) might relate to escape (e.g. from damaging services, from a negative sense of self), enlightenment (e.g. making new sense of experiences, survivor mission) or endurance (e.g. “I’m still here”, “I have survived”).
Mental health story
A story told by a person about their own mental health problems.
This is a broader category than recovery story, as mental health stories do not have to include elements of recovery. In NEON our focus is on recovery stories.
A fixed version of a recovery story.
Telling a story through a medium that does not permit an instantaneous response, including online (websites, forums, discussion boards, blogs, vlogs) or offline (articles, memoirs, leaflets). This contrasts with telling a story in the context of a face-to-face social interaction.
The person telling their own recovery story.
The person viewing, reading or listening to someone else’s recovery story.
A collection of recovery stories intended for use in the NEON Self-Management Tool. 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.
The source of a recovery story in the NEON Collection, which might be existing (obtained from another collection) or new (supplied by the story narrator).
Permission to use a story
Permission will be obtained for each recovery story in the NEON Collection, either through permission from the source collection (another collection gives permission for their stories to be copied into the NEON Collection, and has already received appropriate consent from their participants to do this) or permission from the narrator (the story narrator gives permission for their story to be added to the NEON Collection).
Managing the NEON Collection
The process of assembling the NEON Collection of stories, and handling issues around organisation, consent and withdrawal.
Withdrawal of stories
Story narrators who have donated stories to the NEON Collection will have the right to withdraw their story at any time. The story will be deleted from the NEON Collection and removed from the NEON Intervention. The ability to withdraw a story is limited by the public nature of the intervention, as other may have copied it.
NEON Self-Management Tool
An on-line tool developed by the NEON Study, which makes recorded recovery stories in the NEON Collection available to people with mental health problems, with the aim of increasing their hopefulness that a meaningful life is possible and improving their quality of life. The NEON Self-Management Tool is accessed through a web-browser, and hence available on a desktop or laptop computer, or a smartphone. It uses an algorithm to match stories to users, and also allows users to browse stories based on tags assigned to them.
A Randomised Controlled Trial (RCT) conducted to assess whether the NEON Self-Management Tool can improve quality of life for A. people with experience of psychosis B. people with experience of other mental health problems C. people who support those experiencing mental health problems. For element A, 684 people with experience of psychosis will be recruited, from both within and outside of mental health services.
NEON Staff Intervention
An intervention for mental health staff which will be designed and piloted within the NEON study, with an aim of reducing therapeutic pessimism and increasing staff hopefulness about the likelihood of recovery from mental health problems. The intervention will be used in pre-qualification professional training courses and post-qualification professional development courses. It will draw on the NEON Collection as a resource.
Personalised support for engagement in the NEON Intervention by a non-clinical worker through email, phone, text (SMS) or video call.
NEON study team
The team of researchers and support staff employed to deliver the work of the NEON study.
A specific piece of research which takes place within the overall NEON study. A sub-study will normally generate at least one publication.
Lived Experience Advisory Panel (LEAP)
The Lived Experience Advisory Panel comprises people who have experience of using mental health services. It ensures that Patient and Public Involvement is influential throughout NEON. The panel is organised jointly by Institute of Mental Health and the McPin Foundation, and is chaired by Dan Robotham (McPin Foundation).
LEAP members assemble to meet three times per year, to discuss and offer advice on topics relevant to the study.
LEAP agenda planning meeting
A meeting which takes place 6-8 weeks before a LEAP meeting, to outline the agenda for the LEAP meeting. Attended by 2-3 LEAP members, and 2-3 NEON study team members. Attendance by LEAP members is rotated.
Incorporating the views and expertise of individuals with lived experience of mental health problems into NEON study activities. Involvement might include contributing to thinking about a specific topic or contributing to study outputs.
Programme Steering Committee
The Programme Steering Committee provides independent oversight of the programme, and is the Trial Steering Committee for the trial.
International Advisory Board
the International Advisory Board comprises seven experts who will maximise the scientific value and international impact of NEON.