JMIR FORMATIVE RESEARCH

Slade et al

Original Paper

Recorded Mental Health Recovery Narratives as a Resource for
People Affected by Mental Health Problems: Development of the
Narrative Experiences Online (NEON) Intervention
Mike Slade1*, PhD; Stefan Rennick-Egglestone1*, PhD; Joy Llewellyn-Beardsley1, MA; Caroline Yeo1, PhD; James
Roe2, PhD; Sylvia Bailey3; Roger Andrew Smith3, BSc; Susie Booth3; Julian Harrison3, MA; Adaresh Bhogal3; Patricia
Penas Morán4, PhD; Ada Hui1, PhD; Dania Quadri5, BSc; Clare Robinson6, PhD; Melanie Smuk7, PhD; Marianne
Farkas8, PhD; Larry Davidson9, PhD; Lian van der Krieke10, PhD; Emily Slade11; Carmel Bond12, MSc; Joe Nicholson13,
PhD; Andrew Grundy1, MPhil; Ashleigh Charles1, MA; Laurie Hare-Duke1, PhD; Kristian Pollock14, PhD; Fiona Ng1,
PhD
1

School of Health Sciences, Institute of Mental Health, University of Nottingham, Nottingham, United Kingdom

2

National Institute for Health Research, ARC East Midlands, University of Nottingham, Nottingham, United Kingdom

3

NEON Lived Experience Advisory Panel, Nottingham, United Kingdom

4Department of Personality, Assessment and Psychological Treatment, University of Deusto, Bilbao, Spain

5

GKT School of Medical Education, King’s College London, London, United Kingdom

6

Centre for Primary Care & Public Health, Pragmatic Clinical Trials Unit, Queen Mary University of London, London, United Kingdom

7Department of Medical Statistics, London School of Hygiene and Tropical Medicine, London, United Kingdom

8College of Health and Rehabilitation Sciences, Boston University, Boston, MA, United States

9

Yale School of Medicine, Yale University, New Haven, CT, United States

10

University Medical Center Groningen, University Center of Psychiatry, University of Groningen, Groningen, Netherlands

11

Department of Computer Science, University of Oxford, Oxford, United Kingdom

12

Nottingham University Business School, University of Nottingham, Nottingham, United Kingdom

13

School of Humanities, University of Nottingham, Nottingham, United Kingdom

14

School of Health Sciences, University of Nottingham, Nottingham, United Kingdom*

these authors contributed equally

Corresponding Author:
Stefan Rennick-Egglestone, PhD
School of Health Sciences
Institute of Mental Health
University of Nottingham
University of Nottingham Innovation Park
Triumph Road
Nottingham, NG7 2TU
United Kingdom
Phone: 44 115 409326
Email: stefan.egglestone@nottingham.ac.uk

Abstract
Background: The internet enables sharing of narratives about health concerns on a substantial scale, and some digital healthnarratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focusof research, including those presented in recorded (eg, invariant) form. No clinical trial has been conducted on a web-based
intervention providing access to a collection of Recorded Recovery Narratives (RRNs).
Objective: This study presents knowledge produced through the development of the Narrative Experiences Online (NEON)
Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs.
Methods: Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce
the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles
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Slade et al

for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of apreliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the
NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2
research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives
to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25)
were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then wereinterviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated andrefinements were made.
Results: KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection(reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content andinternalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a
mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization
strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the
self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating thatparticipant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did notpredict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants
accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8%(105/330) of narrative accesses.
Conclusions: RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial isfeasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations,the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health.
(JMIR Form Res 2021;5(5):e24417) doi: 10.2196/24417
KEYWORDS
narratives; storytelling; intervention development; mental health; online intervention; patient involvement; narrative medicine;internet; recovery; mobile phone

Introduction

strengths, successes, or survival [13]. Narratives matching thisdefinition are henceforth referred to as recovery narratives.

Background

Recovery narratives can be shared as part of synchronousinteractions between people, and sharing a recovery narrative
is a core component of the work of peer specialists [14], anestablished effective intervention [15]. Recovery narratives canalso be shared asynchronously in invariant forms such as text
(eg, prose or poetry), audio, video, and other media, including
visual artwork [16]. Narratives shared asynchronously arereferred to as recorded recovery narratives in the remainder ofthis paper. Early examples of recorded recovery narratives canbe found in the 1957 book The Plea for the Silent [17], which
was published with the intent of addressing stigma about mental
health problems. Recorded recovery narratives have been sharedby health service units through booklets collating stories
produced by their clients [18] and in printed autobiographies[19]. When shared on the web, recovery narratives can bepresented individually [20-23] or in curated collections [24].
Recovery narratives have been incorporated into collections
produced by antistigma campaigns such as Time to Change inthe United Kingdom [25] and into websites intended to support
the recovery process, such as Here to Help in Canada [26].

The growing use of social media platforms has enabled thesharing of digital narratives about health and health problems
on a substantial scale [1]. The sharing of digital health narratives
has been examined across a range of domains, including cancer[2], chronic pain [3], and mental health [4]. Digital healthnarratives have also been incorporated into complex healthinterventions, where they can be used to structure therapeutic
discussions [5], support engagement with an intervention [6],address health inequalities by giving voice to underrepresented
populations [7], and reach nonmajority cultural groups or
hard-to-reach populations [6-8]. Access to digital healthnarratives might also normalize experiences of health conditions
and facilitate attitudinal change in health care staff when usedas part of clinical education programs [9]. Although someinterventions have integrated bespoke digital narratives curated
by intervention development teams [10], others draw on thevast range of available public narratives, sometimes using
algorithms to select those narratives that might provide the mosttherapeutic benefit for a recipient [11].
One specific focus of research has been on the subset of healthnarratives that describe recovery from health problems [12,13].
The definitions of recovery narratives vary across healthdomains. A systematic review of mental health defined arecovery narrative as a first-person lived experience account,which refers to events or actions over a period and which
includes elements of adversity or struggle as well as self-defined
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Sharing a recovery narrative can provide substantial benefits
for the narrator [27], and developing new stories about one’s
experiences is central to the work of the hearing voices groups[28] and supports posttraumatic growth [29]. Qualitative
research suggests that the elements of narratives describing
recovery can also provide specific benefits to recipients, suchas reducing isolation or providing hope for the future [30].
Although randomized controlled trials have been conducted on
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interventions incorporating digital health narratives in relation
to weight loss [11] and cancer [31], no randomized controlled
trial has been conducted on the use of recorded mental healthrecovery narratives to benefit recipients. The best interventional
evidence to date is derived from a study that investigated theuse of a bespoke website presenting recovery narratives, among
other mental health material. This identified benefits in threedomains: being inspired, knowing I am not alone, and believing
recovery is possible [10]. Narratives could be received in private,
but meetings with support workers were available.

NEON Program
Overview
This paper describes the development of a web-based
intervention that presents recorded recovery narratives. Researchhas been conducted as a part of Narrative Experiences Online(NEON), a 5-year program of work funded through theProgramme Grants for Applied Research scheme of the National
Institute of Health Research from 2017 to 2022. The aim of
NEON is to investigate whether accessing recorded recovery
narratives can improve health-related quality of life for people
affected by mental health problems [32]. The NEON program
comprises three stages: theory studies, which are completed
and summarized below; intervention development studies, which
are reported in this paper and integrate knowledge produced bytheory studies; and 3 randomized controlled trials to evaluate
the intervention. The primary outcome measure for all 3 trials
was the Manchester Short Assessment of Quality of Life [33].

NEON Theory Studies
A systematic review developed an empirically supported
definition of a mental health recovery narrative [13]. The review
also used a narrative synthesis of 45 included publications todevelop a conceptual framework describing the characteristics
of mental health recovery narratives, grouped into ninesuperordinate categories: genre, positioning, emotional tone,
relationship with recovery, trajectory, use of turning points,
narrative sequence, protagonists, and use of metaphors. This
framework was validated and extended through the analysis of
77 recovery narrative interviews [34] to provide a finalized
Recovery Narrative Conceptual Framework.
A systematic review was then conducted to develop a Narrative
Impact Conceptual Framework, describing the forms of impact
from accessing mental health recovery narratives [1]. This
review included 5 articles. Narrative synthesis was conducted
to identify five transdiagnostic benefits to recipients:
connectedness, a better understanding of recovery, a reduction
in stigmatic views (including self-stigma), the validation ofdifficult personal experiences, and potentially beneficial
behavioral responses, such as the initiation of more meaningfulinteractions with support workers. Strong affective responses
can be produced in recipients of recovery narratives. The review
identified one harmful outcome: emulating harmful behaviors
encountered in eating disorder recovery narratives. It identified
that strategies are needed to support the processing of affective
responses and to minimize harmful impact. The review
concluded that interventions incorporating recorded recovery
narratives might be particularly relevant in areas with low
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Slade et al
population density, that is, where access to both mental healthcare and peers with experience of similar mental health problems
may otherwise be difficult [35].
The Narrative Impact Conceptual Framework was then extended
by a study that developed a long-term narrative impact modelcharacterizing the longer-term impact of live and recorded
mental health recovery narratives [36]. This study involved an
iterative thematic analysis of 77 interviews in which participants
told their own recovery narrative and talked about the impactof recovery narratives of others on them. Helpful changes wereidentified as perceptions of connectedness to the narrative or
narrator (as the strongest mechanism), validation, hope,empowerment and appreciation, a reduction in stigma andself-stigma, and the initiation of a particular form of turning
point [37] identified as a reference shift, where accessing
narrative content leads to a rapid and radical change in how
recipients view what is possible for them. Harmful changes
were identified as perceptions of inadequacy (eg, if a narrativedescribes a recovery that the recipient thinks to be impossible),
disconnection (eg, from narrators who appear to haveexperienced less distress than the recipient), pessimism (eg,how much recovery is possible for the recipient), and emotionalburden caused by empathy with the parts of a recovery narrativethat describes adversity or struggle. The model also identified
factors that might moderate the impact of recovery narratives:
the recipient is experiencing a crisis and the recipient perceives
the recovery narrative as authentic or inauthentic. The long-term
narrative impact model had two main findings. First, a
universally helpful recovery narrative is unlikely to exist, ascomponents of recovery narratives that create benefits for some,such as observing narrator achievements, can cause harm forothers. Second, a careful selection of narratives for use in anintervention is not by itself a sufficient harm management
strategy, and other approaches are also needed to minimize
harm.
A short-term narrative impact model was then developed
through an experimental study on the immediate effect ofaccessing recorded recovery narratives [38]. Current mental
health service users (N=40) where shown a series of recovery
narratives and asked for qualitative and quantitative feedbackon their impact. The short-term narrative impact model wasdeveloped through thematic analysis of the qualitative data. In
the model, change is initiated through a recipient reflecting on
their own experiences and then forming a connection throughthree mechanisms: comparing oneself with the narrative and/or
narrator, learning about other people’s experiences, andexperiencing empathy. The three mechanisms of connection
lead to impact through the identification of change based on the
narrative structure or the interpretation of change in the narrative
content, both of which lead to the internalization of theinterpretation by the individual. Factors moderating impact
included clinical factors (eg, an inability to focus on the narrative
due to symptomatology), personality (eg, long-term difficultyin connecting with others), and recipient preferences such as
narrative modality.
The potential to create positive change means that using
recorded recovery narratives as a mental health intervention ispossible, but the possibility of negative impacts means that care
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is needed. The use of recovery narratives by health services has
also been widely questioned. The critical theorist and activist
collective Recovery in the Bin [39,40] and others [41] haveargued that only very particular types of narratives that areperceived to be successful or acceptable are promoted byservices. This can narrow the range of recovery templates
available to recipients and potentially cause harm by limitingor negating recipients’ own ways of recovering [42]. Others
have expressed concerns that recovery narratives might beco-opted, that is, used for purposes other than those intended
by the narrator, and that this can sustain harmful structures suchas poorly functioning health services [43] or deflect attention
from systemic inequalities and social injustice [41]. These
ethical issues must be carefully considered.
To inform the work of building an ethically defensible recovery
narrative collection, a systematic review of decisions made in
the curation of mental health recovery narrative collections was
conducted [4]. The concept of curation draws on existing usage
within the discipline of museum studies, where the work of
curators has been extensively studied [44]. Curation isunderstood as both a purposeful and political act, with curators
often engaging with artifacts or collections that are sensitiveand challenging [45]. In total, 23 documents were identified,of which only one was a research publication. A significant
knowledge gap was identified regarding curatorial decision
making in relation to recorded mental health recovery narratives.
To address this gap, an interview study was conducted with 30
recovery narrative collection curators from 7 countries [24].
The qualitative analysis identified six categories of decisions
made by curators comprising the VOICES (Values andmotivations, Organization, Inclusion and exclusion, Control
and collaboration, Ethics and legal, Safety and well-being)framework. It was concluded that collection curators have agreat influence on how mental health and recovery issues arepresented and understood and that recovery narrative collections
can provide a mechanism for making collective rather than
individual-level knowledge available.

Slade et al
Inventory of Characteristics of Recovery Stories (INCRESE)[54].
Users of the NEON Intervention can access narratives in four
ways:
1.

2.
3.
4.

The NEON Intervention is being developed and evaluated withthree target groups: individuals who experienced psychosis,
individuals with other mental health problems, and informal
carers.
1.

NEON Intervention Development
This paper reports the process of developing the NEON
Intervention, a new mental health intervention that provides
access to recorded mental health recovery narratives. Digital
health technologies [46] are increasingly being used in global
mental health practice, motivated by challenges such as lengthy
waiting lists for treatment [47], limited access to in-person
mental health treatment in rural and remote communities[48-50], and the distress inherent in accessing in-person
treatment for people experiencing social anxiety [51]. Digital
health technologies are a crucial approach during the COVID-19
pandemic [52], when social connectedness is reduced [53].
The NEON Intervention provides access to the recorded mental
health recovery narratives contained in the NEON Collection.
The NEON Collection is a curated collection of recorded mental
health recovery narratives. Narrators have given permission for
their narratives to be used in the NEON Collection. Eachnarrative is characterized using a standardized inventory derived
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Recommended: they can request the automatedrecommendation of recovery narratives in the NEON
Collection. Requests are served by a recommender system[55], a term encompassing a family of algorithms designed
to match digital media items to users. Recommendersystems are frequently used in web-based digital media
hosting services such as Spotify [56]. The design of therecommender system used in the NEON Intervention draws
on the findings presented in this paper. Recommendations
are informed by the narrative feedback provided after eachnarrative is received. For example, if accessing a recovery
narrative makes a recipient feel more hopeful, they will
receive more recommendations for recovery narratives withsimilar characteristics.
They can directly browse narratives in the NEON Collection
by selecting tags of interest.
They can choose to be shown a randomly selected narrative.
They can rerequest a previously shown narrative.

2.

3.

People who experience psychosis regularly use digitaltechnologies such as social networks [57], and a systematic
review of digital interventions for psychosis incorporating
web-based, social media, and mobile technologies
concluded that these approaches are acceptable, are feasible,and have the potential to improve outcomes [58]. Messages
that promote hope are known to be recovery-promoting in
psychosis [59], and hope is known to mediate potential
psychosis recovery indicators such as increases in structured
activity [60]. Accessing recovery narratives can reduce
self-stigma, and self-stigma predicts low adherence topsychosocial treatments in patients with schizophrenia [61].
The effectiveness of the NEON Intervention for people who
experienced psychosis will be evaluated in the definitive
NEON Trial [27] (ISRCTN11152837).
The evidence reviewed earlier indicates that the benefits ofaccessing recorded recovery narratives are primarilytransdiagnostic; therefore, the NEON Intervention may also
be effective for people with nonpsychotic mental healthproblems. The effectiveness of the NEON Intervention forpeople with mental health problems other than psychosis
will be evaluated in the definitive NEON-O Trial [27](ISRCTN63197153).
With less strong evidence, recovery narratives may be
helpful for informal carers, that is, family or friends ofpeople with mental health problems, both for supporting
their well-being and informing their understanding of theexperiences of the person they care for. The feasibility ofusing the NEON Intervention with informal carers will be
evaluated in the NEON-C Trial [27] (ISRCTN76355273).

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Aims and Objectives
The aim of this paper is to present selected items of knowledge
developed during the intervention development process for the
NEON Intervention and the study procedures for the 3 planned
NEON trials. A detailed description of the final version of the
NEON Intervention and of our chosen trial procedures isprovided in our trial protocol [27]. In combination with our trial
protocol, the knowledge presented in this paper will support the
replication of the NEON Intervention, enable studies with otherpopulations, and inform the development of new interventions
using recorded recovery narratives. Some knowledge products(such as the curation principles described below) will havebroader relevance to the design of interventions, integrating
digital narratives about health and health problems.
The objectives of this study in the context of the developmentof the NEON Intervention by the NEON study are as follows:
1.

2.

3.
4.
5.

6.

Study objective 1: to develop the NEON Impact Model, achange model describing the impact of the NEON
Intervention on recipients
Study objective 2: to identify appropriate curation principles
for the NEON Collection of recorded recovery narratives
used by the NEON Intervention
Study objective 3: to identify appropriate strategies forminimizing harm from the NEON Intervention
Study objective 4: to finalize narrative feedback questions
for use by the recommender system
Study objective 5: to evaluate the acceptability and usabilityof an initial prototype of the NEON Intervention andassociated trial procedures
Study objective 6: to identify features of intervention use
relevant to trial planning

Study objectives 1-3 were addressed through three knowledge
integration activities. These were methodical activities that drewon existing study expertise and knowledge to develop knowledge
products underpinning the final version of the NEON
Intervention evaluated in the NEON trials. Study objective 4
was initially addressed through research study 1, an experimental
study in which quantitative feedback was provided by mental
health service users who were shown items selected from theNEON Collection of recovery narratives. Study objectives 4-6
were addressed through research study 2, a feasibility evaluationof a prototype implementation of the NEON Intervention.
Knowledge produced through the three knowledge integration
activities and 2 research studies is interlinked and is included
in a single paper to provide a thorough account of the NEON
Intervention development work. In selecting these five activities
for inclusion, we focused on describing how human-computerinteraction issues were successfully addressed in developing
the NEON Intervention and trial procedures. This is in keepingwith an accepted definition of human-computer interaction
research as considering the broad personal and sociologicalcontext of technology usage [62]. Technical aspects of thedevelopment of the recommender system used in the NEON
Intervention were also informed by the knowledge presented
in this paper. These will be reported elsewhere.

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Slade et al
The research reported here was conducted between September
2017 and October 2019. Ethical approval was received fromthe London - West London and Gene Therapy Advisory
Committee Research Ethics Committee in advance(18/LO/0991). All participants provided informed consent,
either in written or audio-recorded form. Appropriate consent
was also collected for the inclusion of all narratives in the NEON
Collection.
The methods and results for each of the five selected activities
are described. As a result of research studies 1 and 2,
refinements to the prototype implementation of the NEON
Intervention used in research study 2 were made. These
refinements are described in the Results section. We reflect on
the broader implications of our findings in the Discussionsection.

Methods
Knowledge Integration Activity 1: Development of the
NEON Impact Model
This knowledge integration activity developed the NEON Impact
Model, describing how recorded recovery narratives improveoutcomes. The modeling of change is recommended in the UK
Medical Research Council guidance on the development andevaluation of complex evaluations [63].
The 3 completed NEON studies on impact [1,36,38] weresynthesized by the NEON research team to produce a change
model comprehensively describing how health-related outcomesmight be produced by receiving recorded recovery narratives.
The short-term narrative impact model was selected as thetheoretical foundation of the integrated change model because
it was produced by an experimental study considering only
recorded recovery narratives. To incorporate longer-term
impacts, relevant components from the Narrative Impact
Conceptual Framework and the long-term narrative impact
model were integrated if they described health-related change.
Informed by the biomedical principle of nonmaleficence [64],negative outcomes identified in other eHealth studies [65] wereadded if they might be produced through use of the NEON
Intervention, to inform the design of harm minimization
strategies or trial procedures. Moderators and forms of learning
were present across all underpinning studies; hence,comprehensive lists were synthesized by merging similar items
and grouping them into superordinate categories.

Knowledge Integration Activity 2: Identification ofCuration Principles
This knowledge integration activity identified appropriate
curation principles for the NEON Collection of recovery
narratives. Implementing these principles ensured that the
NEON Collection addresses all safeguarding, ethical, legal,
clinical, and technological challenges associated with storing
and using recovery narratives.

Measures
The INCRESE is a 77-item, researcher-rated standardized tool
to identify manifest and latent characteristics of recorded mental
health recovery narratives [54]. Categories in INCRESE
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comprise narrative eligibility, narrative mode, narrator
characteristics, narrative characteristics, and narrative content.
In total, 71 items characterize manifest content (eg, narrator
gender, narrator diagnosis, content requiring content warnings,
types of turning point, specific topics such as family, education,
or work), and 6 characterize latent content (stage of recovery,
genre, positioning, tone, relationship with recovery, andtrajectory). Specific attention was paid to the issue describedearlier, relating to the importance of diverse recovery templates,
so items and rating categories included uses a nondiagnostic
framework, recovery despite services, recovery outside services,
narrator rejects the concept of recovery as used in mental healthservices, and circular trajectory. Different rating scales are used
for different sections, for example, present or mainly positiveor mainly negative for specific narrative content and escape or
endurance or endeavor or enlightenment for genre. No summaryscores were produced.

Procedures
All elements of the design of the NEON Collection were
explored using the VOICES typology of curatorial decisions as
an organizing framework [24]. The research team sought advice
on specialist issues from relevant experts, for example, legal
advice was obtained in relation to intellectual property andreferences to third parties in recorded recovery narratives. To
ensure that the curation principles for the NEON Collection
were informed by a lived experience perspective, rather thanreflecting solely research and clinical priorities, three
consultation workshops with the NEON Lived Experience
Advisory Panel (LEAP) were held between October 2017 andJune 2018. The NEON LEAP comprises an independent chairand 10 members with an interest in recovery narratives andpersonal experience of mental health problems and services
either directly or as family members. Workshop agendas were
co-produced between a subgroup of the NEON LEAP and theresearch team, who met at least two weeks before each workshop
to finalize the agenda and precirculate preparatory materials inline with best practices [66]. Workshops addressed issues
presenting complex ethical challenges, such as inclusion andexclusion criteria, appropriate approaches to anonymization,
withdrawal of narratives, and procedures for processing
third-party requests for narrative withdrawal. Each workshop
was attended by approximately 15 participants, comprising all
NEON LEAP members and several research team members.
Each workshop involved facilitated whole-group and subgroup
discussions to systematically explore curatorial issues from a
lived experience perspective. The meetings were minuted indetail. LEAP members were paid GB £150 (US $210) plus
expenses per workshop. This work informed the ethics
application enabling intervention development work. This wasapproved by the UK Health Research Authority to govern thelong-term management of the NEON Collection.
A key challenge identified through work with LEAP was theselection of appropriate inclusion and exclusion criteria fornarratives. To refine these criteria and to ground them inpractical challenges, a preliminary collection of 100 recovery
narratives was assembled from publicly accessible resources
and with the permission of the collection curator or narrator as
required. The NEON Collection Steering Group (CSG)
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Each narrative was coded by at least one researcher against the
proposed inclusion and exclusion criteria and classified as either
clearly included, clearly excluded, or not clear. Narratives coded
as not clear were referred to the NEON CSG for a final decision.
The CSG decided on inclusion and identified any necessary
clarifications regarding the wording and interpretation of the
inclusion or exclusion criteria. All decisions were minuted, andthe current inclusion and exclusion criteria were updated on the
NEON Collection web page [67].
Curation involves a careful review of narratives, which cancreate a significant emotional burden [36]. Furthermore,narratives that met the inclusion criteria were coded using
INCRESE before inclusion in the NEON Collection, which
involved a detailed assessment of a large number of narratives.
In an unplanned add-on study, a feedback questionnaire wascompleted by INCRESE coders, covering the emotional impact
of characterizing narratives and personal strategies forwell-being [54]. These questionnaires were analyzed to identify
general principles to support curator well-being. A facilitateddiscussion was then held involving all CSG members or NEON
researchers who had coded at least 30 narratives. Participantsreflected on personal well-being strategies, considered thequestionnaire analysis, and identified the principles ofwell-being. The consensus recommendations were minuted.

Analysis
To synthesize knowledge on the most critical decisions taken
during this process, a document analysis [68] was conductedon the minutes of NEON LEAP consultation meetings (n=3),
the approved research protocol, minuted recommendations
produced by CSG, the NEON Collection page on the NEON
website, and minuted recommendations from the workshop on
coder well-being. The documents were imported into NVivo(QSR International; version 11). The text describing a decisionor the rationale for the decision was identified and summarized.
Decisions were then organized into six predefined categoriesof the VOICES framework of narrative curation.

Knowledge Integration Activity 3: Identification ofHarm Minimization Strategies
This knowledge integration activity identified appropriate
strategies for minimizing harm from the NEON Intervention.

Participants
Strategies were developed through consultation between the
NEON research team, the NEON LEAP as described inknowledge integration activity 2, and the NEON International
Advisory Board, which comprises 7 experts in research andintervention development around recovery narratives, eHealthinterventions, peer research, and mental health recovery.

Procedures
An iterative approach was used to identify, implement, andrefine candidate harm minimization strategies. The NEON
Impact Model was used as a foundation for shaping harm
minimization strategies, and an evolving design rationale [69]explaining essential decisions and why they were made wascreated. This was expressed in the form of a draft protocol for
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the 3 NEON trials. An early draft of the trial protocol was
discussed with NEON International Advisory Board members,
and the prototype developed for research study 2 was thendiscussed at two meetings between a subgroup of NEON LEAP
and NEON researchers. These consultations led to protocol andprototype enhancements. The prototype was considered at a
NEON LEAP meeting, and further enhancements were made.
One area in which efforts were made to be guided by research
was in relation to content warnings, also known as trigger
warnings, defined in an education context as “offering priornotification of an educational topic so that students may prepare
for or avoid distress that is automatically evoked by that topic
due to clinical mental health problems” [70]. The research teamconducted a nonsystematic narrative review of research on
content warnings [27]. The review found limited and conflicting
evidence, primarily drawn from educational or trauma treatment
settings [70-75]. No directly relevant evidence concerning theimpact of content warning in relation to mental health recovery
narratives was identified. NEON is a health service–fundedstudy, so it was decided to follow the standard clinical practiceof giving content warnings on the basis of the ethical principleof nonmaleficence.

Research Study 1: Narrative Feedback
The aim of research study 1 was to evaluate an initial set ofnarrative feedback questions designed for use in therecommender system. This contributed to the selection of a final
set of narrative feedback questions, in keeping with study
objective 4. The specific objectives of research study 1 were to
identify floor and ceiling effects in narrative feedback, todescribe variability among participants, and to examine whether
the order of presentation affected response. The latter was
included because it might indicate fatigue in the repeatedprovision of feedback. The analysis used quantitative narrative
feedback data collected in the short-term narrative impact model
study [38] but only qualitative data from this study havepreviously been reported.

Participants
Eligible participants were people with current mental healthconcerns, using statutory mental health services, aged above 18
years, able to provide informed consent, and fluent in English.
Individuals who were experiencing a crisis or who wereotherwise unable to participate in the research were excluded.

Setting
Participants were recruited from statutory mental health services
within a health care trust in the East Midlands of England.

Measures
The Herth Hope Index (HHI) is a 12-item measure of hope
adapted from the Herth Hope Scale with adequate psychometricproperties [76]. The HHI score ranged from 12 (low hope) to48 (high hope).

Procedures
A subset of 30 narratives were assembled from the NEON
Collection by 2 researchers. Narratives were purposively
selected to maximize the variation in modality, narrator
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diversity, and length. Modality was chosen because multimedia
use in educational settings has been shown to increase the depthof learning in students [77], suggesting that this may promote
engagement and cater to different learning styles within
individuals. Narratives with a substantial range of modalities
are available in the public domain, and the use of multimedia
may also promote the inclusiveness of individuals who
experience disabilities or who may have difficulty
comprehending a specific mode of media, for example, due todyslexia. The selected narratives were diverse in narrator age,gender, and ethnicity, given the evidence from the NEON Impact
Model that sociodemographic characteristics can influenceconnection. Finally, to vary the cognitive demands ofparticipants, the chosen narratives were different in length. Text
narratives ranged from half a page to 3 pages, video narratives
ranged from 1 to 5 minutes, and audio narratives ranged from
2 to 3 minutes. On the basis of a pilot study protocol, it wasestimated that, on average, participants would take no longer
than 10 minutes to read, watch, or listen to a narrative. A totalof 30 narratives were selected, comprising 15 texts (poems andprose text), 10 videos, and 5 audio-based narratives.
The study was promoted as an investigation of narrative impact
through social media, advertisements within services (eg, posters
and newsletters), and by clinicians and managers from
Improving Access to Psychological Therapy Services,
community forensic services, locality mental health teams, andrecovery colleges. Both clinician referrals and self-referrals tothe study were accepted. Potential participants were given a
participant information sheet by their clinician or researchers.
Interested participants then contacted the researchers or gave
their clinician permission to pass on their contact details. The
researchers assessed eligibility, and informed consent was
obtained before the interview. Interviews took place in auniversity or clinical setting.
Each participant took part in a two-hour research session, forwhich they were offered GB £20 (US $28) plus expenses. After
providing informed consent, the researcher completed aparticipant characterization form from the verbal responses
provided by the participant. The characteristics recorded
included age, gender, preference for narrative modality, current
diagnosis, and hope (HHI). Each participant then sequentially
received randomly selected narratives, discontinuing when theparticipant indicated that they wished to stop. If individuals
expressed a preference for narrative modality, then only
narratives consistent with their preferences were considered.
After accessing each narrative, the participants provided
narrative feedback by rating three questions: How connectedto the story did you feel? How connected to the narrator of thestory did you feel? How hopeful did the story make you feel?
Each response was rated on an 11-point scale (rating: 0-10).
The labels for the two questions on connection were as follows:
0, extremely disconnected; 2, somewhat disconnected; 5, neither
connected nor disconnected; 7, somewhat connected; and 10,
extremely connected. The labels for the question on hopefulness
were as follows: 0, extremely pessimistic; 3, somewhat
pessimistic; 5, neither hopeful nor pessimistic; 7, somewhat
hopeful; 10, extremely hopeful.

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Analysis
Quantitative analysis was conducted using SPSS statistics (IBM;version 25) and STATA SE (version 16). The significance level
was set at P=.05. Narrative feedback responses were groupedby question and then tested for nonnormality using theKolmogorov-Smirnov test. No evidence of nonnormality was
found; therefore, parametric tests were used.
Floor and ceiling effects and variability across participants were
inspected by creating box-and-whisker plots. Outliers were
defined as cases that fell 1.5 times above or below the IQR, andextreme outliers were defined as cases falling 3 times above or
below the IQR. The impact of order of presentation was
evaluated by creating a derived variable called presentation
order (first, second, third, fourth, fifth, etc) and conducting alinear multilevel regression with each narrative feedbackquestion as a dependent variable. This was because allparticipants accessed at least four narratives but not all accessed
five or more.

Research Study 2: Feasibility Evaluation
The aim of research study 2 was to evaluate the feasibility ofusing the NEON Intervention and associated trial procedureswith people with experience of mental health problems. The
specific objectives were to finalize narrative feedback questions(study objective 4), to evaluate the acceptability and usabilityof an initial prototype of the NEON Intervention and associatedtrial procedures (study objective 5), and to identify features ofintervention usage relevant to trial planning (study objective
6).

Participants
Eligible participants were people with current mental healthconcerns; using statutory mental health services; aged ≥18 years;
having the capability, with support if needed, to interact with a
web-based intervention; having access to a computer or
smartphone with an internet connection at home, in a community
venue, or through a health service venue; who are able toprovide informed consent; and who are fluent in English.
Individuals who were experiencing a crisis or who wereotherwise unable to participate in the research were excluded.

Setting
Participants were recruited from statutory mental health services
within a health care trust in the East Midlands of England.

Procedures
Research participants were recruited through a single healthcare trust in England, using three strategies. First, posters andleaflets were placed in health services and community venues.
Second, participants were recruited through a direct approachby clinical support officers who attended health care clinics.
Third, communication was sent by the research team to prior
NEON research participants who provided ongoing consent tocontact.
A prototype web-based NEON Intervention was developed as
an interactive platform for implementing strategies and allowing
the features to be used by others to inform refinements. The
platform integrated the NEON Intervention with selected
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web-based trial procedures, such as eligibility testing andweb-based consent processes. All components of the NEON
Intervention were implemented apart from the recommendersystem, and the baseline measures component was implemented
in reduced form, that is, with fewer measures. Data usage wasautomatically logged, including the device type used to accessthe intervention, time between key trial processes (informed
consent, baseline measure completion, randomization, firstnarrative presentation, etc), frequency, and context of usage of
specific features (eg, “I’m upset” or “Get me out of here”).
Participants attended a 2-hour baseline interview at a researchsite, for which they were offered GB £20 (US $28) payment
plus expenses. They worked through a series of tasks using a
prototype. The tasks were to read the web-based participant
information sheet; provide web-based consent through an
informed consent form; register a NEON Intervention accountusing an email address; complete a web-based participant
demographics form; complete the 12-item Manchester Short
Assessment of Quality of Life [33], which is the primary
outcome; complete the 10-item CORE-10 (Clinical Outcomesin Routine Evaluation) measure of problems, functioning, andrisk [78], which is a secondary outcome; access an initial random
narrative and provide narrative feedback; use the NEON
Intervention to select an additional narrative and provide
narrative feedback using the same three questions and rating
scale as in study 3; and if time allowed, to explore the interface,
including features such as the “About me,” “I’m upset,” and“Get me out of here” buttons.
During these tasks, participants were asked to verbalize theirthoughts using a think-aloud protocol [79]. The researcher did
not guide the participant, although occasionally the researcher
assisted if the participant was stuck and could not progressdespite substantial effort. The planned exception was that the
researcher would proactively assist a participant who indicatedthat they normally needed support in using a computer system,
but this did not occur in practice. After the tasks were completed,the participants were asked two trial procedure questions: Would
you be happy to receive payment for trial participation throughonline vouchers? What might prompt you to use the intervention
after your first use of it? The interview was recorded, and theresearcher made field notes on the observations.
Following the baseline interview, participants were given
unconstrained access to the web-based prototype for 28 days,
during which time their usage was automatically logged. A
follow-up interview was then conducted at a research site, andparticipants were paid GB £20 (US $28) plus expenses. A
summary of their recorded usage of the intervention was
prepared, showing the number of narratives accessed and rated,
number and date of log-ins, and proportion of log-ins on mobile
devices (smartphones or tablets) or computers (laptops or
desktops). At the follow-up interview, participants were shown
their usage and asked to discuss notable features, such as periodsof high or low usage. Data usage summary sheets as a form ofdata visualization are a standard approach to support reflection
on computer system usage [80]. If a system or system featureis underused, the discussion of usage data can differentiate
whether this was due to (1) the system creating immediate
positive change requiring no further engagement, (2) periods
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of planned technological disconnection such as holidays, or (3)malfunction, dislike, or poor usability of the system or feature[81].
The prototype was also discussed at a NEON LEAP meetingand minutes were taken. NEON LEAP members were
subsequently given access to the prototype and provided written
feedback.

Analysis
To meet study objective 5, a list of prototype features wascreated. For each feature, feedback from baseline and follow-up
interviews and NEON LEAP feedback were synthesized. Shortnarrative summaries of responses to the two trial procedurequestions were produced, and the baseline field notes wereanalyzed thematically. Each element of feedback was
categorized as acceptable, unacceptable, usable, less usable,
and other. Categories of unacceptable and less usable identified
features that most needed improvements. Categories of

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acceptable and usable were included to indicate variations in
response across the cohort, for example, to identify whether
there were features that were acceptable to some but
unacceptable to others. Feedback in the other category wasreviewed individually.
To meet study objectives 4 and 6, descriptive analyses wereconducted to describe participant demographics, frequency androute of access, frequency of narrative feedback, and frequency
and length of use of the NEON Intervention.

Results
Knowledge Integration Activity 1: NEON Impact
Model
The NEON Impact Model, describing the processes by which
engaging with a recorded recovery narrative can create change,
is shown in Figure 1.

Figure 1. Narrative Experiences Online Impact Model linking experience of narratives to outcomes. NEON: Narrative Experiences Online.

In the NEON Impact Model, the impact of a recovery narrative
is moderated by the characteristics of the recipient and thecontext in which they receive it. A complete list of recipientand contextual moderators synthesized from the source studies
is shown in Table 1.
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narrative (mechanism 2 in Figure 1). The types of learning
synthesized from the source studies are shown in Textbox 1.
The NEON Impact Model informed (1) the design of the NEON
Intervention, including the narrative feedback questions andguidance about using the intervention, and (2) the trial processevaluation.

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Table 1. Moderators of the impact of recovery narratives.
Moderator

Direction of influence

Recipient characteristics
Recipient reports a long-term inability to connect with others.

Reduced impact

Recipient has experienced a recent event perceived as distressing.

Reduced impact

Recipient is experiencing a mental health crisis.

Reduced impact

Recipient has beliefs, values, or attitudes contradicting those of the narrator.

Reduced impact

Recipient is experiencing mental health problems that disrupts information processing (such as hearing voices).

Reduced impact

Recipient perceives the content of the narrative to be emotionally challenging.

Reduced impact

Recipient experiences difficulties in comprehending the form of the narrative (eg, if the narrative is presented as a poem). Reduced impact
Recipient perceives the narrative or narrator to be inauthentic.

Reduced impact

Recipient perceives the narrative or narrator to be authentic.

Increased impact

Contextual characteristics
Recipient has access to a private space to access challenging narratives.

Increased impact

Recipient has access to a mental health worker who supports processing.

Increased impact

Textbox 1. Types of learning from accessing recovery narratives.
Learning About Mental Health•

How others experience a mental health condition•

Alternative conceptualizations of mental health problems•

The impact of mental health problems on others (eg, carers)•

New coping strategies to enhance daily living

Learning About Recovery•

Recovery is possible•

Specific recovery strategies that have helped others•

Barriers to recovery that others have experienced•

Differing beliefs and values that have supported recovery•

How to manage treatment and make best use of services

Knowledge Integration Activity 2: Curation Principles
The NEON Collection curation principles are listed in Textbox
2. These have been implemented in full to create, manage, anduse the NEON Collection.

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Textbox 2. Curation principles for the Narrative Experiences Online Collection.
Curation Principles
VOICES (Values and motivations, Organization, Inclusion and exclusion, Control and collaboration, Ethics and legal, Safety and well-being) domain
1: values and motivations of the Narrative Experiences Online (NEON) Collection•

Purpose: the primary purpose of the NEON Collection is to provide benefits to recipients.

•

Mission: the NEON Collection will seek for heterogeneity of narrative content, form, and narrator demographics and to be as large as possible.
Greater heterogeneity and size increases the chance of a recipient finding someone like them or a story like theirs and hence experiencing thehelpful outcomes outlined in Figure 1. Insufficient heterogeneity and size risks a recipient failing to find someone like them and hence feelingmore disconnected from others.

•

Less hopeful narratives: the NEON Collection will include some narratives where adversity and struggle are the dominant themes. Althoughthese narratives are less regularly used by health services, recipients experiencing profound distress may find it easier to connect with suchnarratives.

VOICES domain 2: organization of the NEON Collection•

Donation from existing collections: narratives can be donated to the NEON Collection by organizers of existing collections but only if thecollection organizer confirms that appropriate consent has been obtained and only if the narrative is already public. Appropriate consent means
either the collection organizer has previously collected consent to enable reuse or has obtained consent from individual narrators to donate theirnarrative to the NEON Collection. Details of the source collection will be retained and may be displayed to recipients to help them understandthe context of the narrative.

•

Donations from individuals: narratives can also be offered to the NEON Collection by individual narrators, even if they have not been published.

•

Role of the curator: NEON researchers will assess inclusion of narratives, with involvement of the Collection Steering Group (CSG), the NEON
Chief Investigator, or a legal expert where uncertainty exists around specific exclusion criteria. Diversity in the NEON Collection will be monitored
to identify underrepresented groups to be targeted for narrative donation. Curators of the NEON Collection will not edit narratives, which will
be displayed as close as possible to their original form.

VOICES domain 3: inclusion and exclusion of narratives in the NEON Collection•

Decision-making process: decisions on inclusion will be made with reference to formal current inclusion and exclusion criteria. These criteria
will be publicly available to ensure transparency. Numbers of narratives considered, included, and excluded will be published for transparency.
If stories link to external material, then the contents of this material should not be considered when deciding inclusion, as it may change. Donors(either individual narrators or collection organizers) will be informed if their narrative is not included, and there will be an appeal process.

•Inclusion criteria: a narrative is includable in the NEON Collection if all of the following criteria are met—(1) it includes elements of adversity
or struggle that relate to mental health problems, broadly defined; (2) it includes descriptions of strength, success, or survival, as defined by thenarrator or identifiable by a third party; (3) it refers to events or actions over a period (including either external events or internal mental events);(4) it is told by an individual with experience of mental health problems and recovery; (5) where language is used, the narrative is mainly inEnglish or, if translated, the translation needs to be provided or approved by the narrator; (6) the story is provided in a digital file, the story isprovided in a format that can easily be converted into a digital file, or the story is hosted on an existing webpage, the URL to the webpage ispermanent, and the page does not contain links that would enable navigation to another page; or (7) consent to use the narrative in perpetuity(other than if the narrative is withdrawn) has been obtained from the narrator, from the owners of an existing collection who have previously
collected consent from their donors that is broad enough to allow for reuse, or from the owners of an existing collection who have collectedindividual consent from their donors for usage in the NEON Collection.

•

Exclusion criteria: a narrative is excluded from the NEON Collection if any of the following criteria are met—(1) it is presented as fictional; (2)it is told by anyone other than the individual experiencing mental health problems and recovery (such as a carer or journalist); (3) (for video andaudio stories) the quality of recording is so low that the story is very difficult or not possible to understand; (4) it is split across multiple files ormodalities or uses a multimedia approach that cannot easily be integrated into a single file; (5) it contains descriptions of potentially harmful
behaviors in sufficient detail as to be likely to encourage imitation; (6) it indicates that the narrator has engaged in an undisclosed, serious criminal
activity; (7) the narrator is a child or appears to be a child, unless it has been confirmed that the narrator is now an adult and has provided consent
for a childhood story to be shared; (8) it contains hate speech; (9) it provides information about a third party that might reasonably lead to harm
being caused to the third party such as providing directly identifying information about someone accused of abuse; (10) it includes sensitive
personal information about individual third parties, unless the third party has already made this information public, for example, by publishing
their own recovery story, or unless the third party is no longer alive. A story includes sensitive information about a third party if it clearly reveals
their political or religious beliefs, mental or physical health conditions, sexual orientation or behaviors, or any offences committed or alleged tohave been committed by them; (11) it reveals the adoption status of a third party, unless the third party has already made this information public;or (12) it raises any other unforeseen concerns, in which case this list of reasons for exclusion may be updated. Exclusion criterion 9 is included
for predominantly legal reasons: the NEON Collection is hosted in the European Union (EU) and hence subject to the EU General Data Protection
Regulations on personal information.

•

Resolution of uncertainty: when making an assessment, there will be a bias toward the inclusion of a narrative. For example, inclusion criteria
2 is met if any rater can see strengths, successes, or survival in a narrative. If NEON researchers are uncertain whether a narrative meets all the
inclusion criteria or exclusion criterion 1, 2, or 3, a final decision will be made by CSG. If the uncertainty is about exclusion criterion 4, 5, 7, 11,
or 12, a final decision will be made by the NEON Chief Investigator. If the uncertainty is about exclusion criterion 6, 8, 9, or 10, an opinion will
be sought from a legal representative approved by the study sponsor. Some forms of uncertainty can be resolved by asking the narrator for a shortaddendum to contextualize the narrative, but narrators are not required to submit this or may not be contactable, and hence final decisions mayneed to be made without it.

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VOICES domain 4: control and collaboration around the NEON Collection•

Oversight: for the duration of the NEON program, the study sponsor will act as an auditor and may examine records relating to narrative consent.
If use of the NEON Collection continues beyond the end of the study, an equivalent authority needs to be in place and approved by the study
sponsor.

•Archiving and reinstatement: the NEON Collection can be temporarily archived (eg, at the end of the NEON program) and withdrawal requests
cannot be met while it is archived. It can only be reinstated from the archive if a body with an equivalent status to a study sponsor is identified.

•

Information about approvals: details of legal and ethical approvals for the NEON program and the NEON Collection will be displayed whenevernarratives from the NEON Collection are used.

VOICES domain 5: ethical and legal considerations for the NEON Collection•

Documentation of consent: if a collection organizer wishes to offer narratives to the NEON Collection, they must confirm in writing that consent
has been provided. This confirmation will be stored for audit purposes.

•

Rights of collections: collection organizers have the right to withdraw any narratives that they have donated.

•

Rights of the narrator: accepted narrators have a right to inclusion and publication of a short addendum. They might use this to illustrate how
their life has changed since they created their narrative or to contextualize what was happening in their life at the time they wrote their narrative.
All narrators have a right to withdraw a narrative. They can request withdrawal through a collection organizer if the narrative was donated froman existing collection or directly through the NEON Collection in all cases.

•

Rights of third parties: third parties can request withdrawal, for example, if they assert that a narrator did not have capacity when they submitted
a narrative, and each request will be individually assessed by the NEON CSG. To protect the right of narrators to have their story told, third
parties do not have an automatic right to withdrawal.

•

Processing of withdrawal requests: all narratives will be given a unique ID to aid withdrawal requests. Since some withdrawal requests may bemalicious, such as an attempt by someone who is not the narrator to withdraw the narrative without due cause, in order to protect the rights ofnarrators and the existence of the NEON Collection, proof of identity may be required. Low-burden mechanisms will be provided to establish
identity.

•

Assertion of copyright breach: individuals can assert that a narrative has breached their copyright, and assertions of copyright theft will beprocessed in accordance with the European e-Commerce Directive 2000/31/EC [82].

•Expectations on recipients: to access narratives in the NEON Collection, a user must register an account and commit to not copying any material.
This is because some individuals have donated narratives that are not published elsewhere.

VOICES domain 6: safety and well-being•

Safety of narrators: the NEON Collection will not edit or anonymize narratives that have been submitted because stories can be an economic andsocial resource for some narrators and because this may have intellectual property implications for the NEON program. If an individual donates
their narrative to NEON, they will be provided with information about how the narrative will be used and encouraged to think about consequencesof revealing their identity in a narrative, allowing them to make an informed choice about whether to be identifiable. They can submit identifying
metadata (such as a story title that includes their name) if they wish.

•

Safety of curators: when assessing narratives for inclusion, curators have the right to disengage from a narrative that distresses them, either
temporarily or permanently, without providing a reason.

Knowledge Integration Activity 3: Harm Minimization
Strategies
Several harm minimization strategies were identified andimplemented in the NEON Intervention.

Strategy 1: Informed Consent
Potential participants were informed through a web-based
participant information sheet about the potential harmful impacts
listed in the NEON Impact Model (Figure 1). This allowed
participants to make an informed choice about whether toparticipate in the study.

can change the recorded strategies in the “About me” sectionof the intervention.

Strategy 3: Dealing With Emotional DistressParticipants were encouraged to use the “I’m upset” button if
they become upset while using the NEON Intervention. Thisbutton is prominently available on all intervention pages andopens a webpage, providing access to four resources:••

Strategy 2: Reflecting on Self-management
Before receiving the first narrative, participants received brief
advice on how to handle difficult emotional responses tonarratives. They were then asked to record self-management
strategies that they find helpful to use when upset. Thisencouraged participants to apply their self-management
strategies if needed when using the NEON Intervention. They
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A reminder of any self-management strategies theypreviously recorded.
Information about national helplines in England:
Samaritans, Mind, The Mix, Elefriends, Big White Wall,
Saneline, and Rethink Mental Illness.
Evidence-based self-management resources organized into
categories such as express yourself creatively, labeling yourfeelings, mindfulness, self-soothing, meditation, breaking
up triggers, and distraction.

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Information about contacting a general practitioner, local
mental health services, and the National Health Service(NHS) urgent and emergency care hotline.

Strategy 4: Content Warnings
INCRESE rates five sensitive issues: abuse or sexual violence,loss of life or endangerment to life, self-harm including eating
disorders, violence or aggression and injustice, and prejudice
and discrimination. As interpretation is needed in relation tosome of these, compromising interrater reliability, INCRESE
items relating to content warnings only will be independently
rated a second time by a different rater. If either rater identifies
a content warning as relevant, it will be included in the final
INCRESE rating. If the INCRESE rating of a narrative indicates
it deals with any of the five content warning issues, then all
relevant content warnings are displayed before the presentationof the narrative. The participant must actively select to proceed
to be presented with the narrative.

Strategy 5: Proactively Blocking Categories of Narratives
Participants have the ability to block categories of narratives.
They can be blocked based on the modality or content. For
modality, they have the option to block up to three of the four
categories: text, audio, moving images, and static images. For
content, they have the option to block any of the five INCRESE
content warning categories: abuse or sexual violence, loss of

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life or endangerment to life, self-harm including eating
disorders, violence or aggression and injustice, and prejudice
and discrimination. Narratives in each blocked category are notconsidered for future presentation. The “About me” section of
the website contains the option to unblock previously blocked
categories of narratives.

Strategy 6: Reactively Blocking Individual Narratives
If a participant finds a narrative distressing, they can block it
during or after its presentation. The narrative will be
immediately hidden from them and will not be considered for
future presentation. The “About me” section contains the option
to unblock previously blocked individual narratives.

Strategy 7: Easy Exit
A button labeled “Get me out of here” is prominently provided
throughout the intervention, which when pressed goes to aneutral webpage. This can be used if a participant feels
overwhelmingly distressed and wants to quickly leave theintervention or if the interface is being accessed in a public
setting and a participant does not want others to know about
their usage.

Research Study 1: Narrative Feedback
The clinical and sociodemographic characteristics of the 40
participants included in this study are shown in Table 2.

Table 2. Characteristics of participants of study 3 (N=40).
Characteristics

Participants

Gender (female participant), n (%)

24 (60)Age (years), mean (SD)44.4 (16.7)

Modality preference indicated, n (%)

28 (70)Herth Hope Index, mean (SD)31.1 (5.3)

Diagnosis, n (%)
Mood disorder

15 (38)Schizophrenia or other psychosis

9 (23)

Bipolar disorder

7 (18)

Personality disorder

8 (20)

Other

1 (3)

Self-rated recovery trajectory, n (%)
I am recovered

1 (3)I am living well

4 (10)I am making progress

18 (45)I am surviving day to day

17 (43)

Participants provided feedback on a total of 281 narratives, witha median of 7 randomly selected narratives (range 4-14)
accessed per participant from a pool of 30 narratives.
For the 281 ratings of narratives, the mean ratings for connection
to the narrative (mean 6.03, SD 2.77), connection to the narrator

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impact on participants in terms of connection and hope, as thechosen rating scales used a value of 5 to indicate a neutral
impact. The distribution of narrative connection ratings for eachof the 30 narratives is shown in Figure 2.

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Figure 2. Ratings by participants (N=40) of connection to the narrative.

The distribution of narrator connection ratings for each narrative
is shown in Figure 3.
Figure 3. Ratings by participants (N=40) of connection with the narrator.

The distribution of hopefulness ratings for each narrative isshown in Figure 4.

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Figure 4. Ratings by participants (N=40) of hopefulness for each narrative.

There were no apparent floor or ceiling effects in narrative
feedback. Narratives 12 (range 7-10) and 13 (range 6-10) werehope-promoting for all participants in the sample, and narrative
15 had the highest median hope rating of 8.0 (IQR 7-9.8).
However, hope ratings were more widely distributed for theother 28 narratives, which were hope-promoting for someparticipants but hope-reducing for others. The order ofpresentation did not predict any of the three narrative feedback
ratings, and hence, there was no evidence of fatigue effects.

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Collectively, these results provide no rationale for discarding
the candidate narrative feedback questions evaluated in thisstudy, but they indicate that narrative feedback might be used
to tailor recommendations of narratives to individuals, given
substantial variability among participants on feedback provided.

Research Study 2: Feasibility Testing
The clinical and sociodemographic characteristics of the 25participants included in this study are shown in Table 3.

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Table 3. Characteristics of participants of study 4 (n=25).
Characteristics

ParticipantsAge (years), mean (SD)39.3 (11.6)

Ethnicity, n (%)
Asian

4 (16)

White

21 (84)

Occupation, n (%)
Sheltered employment

1 (4)Employed

9 (36)

Unemployed

8 (32)

Retired3 (12)

Training or education

4 (16)

Living situation, n (%)
Alone

8 (32)

With others

17 (68)

Education, n (%)
No qualification

2 (8)O-levels, General Certificate of Secondary Education, or equivalent

3 (12)

A-levels, National Vocational Qualification, or equivalent

5 (20)

Degree-level qualification

11 (44)Higher degree–level qualification

4 (16)

Service contact, n (%)
No contact with any National Health Service

0 (0)Contact with my general practitioner only (self-reported)

1 (4)Contact with my general practitioner and with IAPTa

1 (4)Contact with my general practitioner and a specialist mental health team23 (92)

Duration of service support in years
Mean (SD)13.88 (9.45)

Median (IQR)

10 (7-20)

Has ever been an inpatient, n (%)

10 (40)Current diagnosis, n (%)
Schizophrenia or other psychosis

5 (19)

Bipolar disorder

9 (33)

Mood disorder

4 (15)

Other (included ADHDb, posttraumatic stress disorder, personality disorder, and autism)

9 (33)MANSAc score
Mean (SD)

4.13 (1.01)

Median (IQR)

4.5 (3.58-4.67)

COREd-10 scoreaMean (SD)18.84 (9.11)

Median (IQR)

20 (13-23)

IAPT: Improving Access to Psychological Therapies, a mental health treatment program provided by the National Health Service in Englandb

ADHD: attention-deficit/hyperactivity disorder.

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MANSA: Manchester Short Assessment of Quality of Life.

d

CORE: Clinical Outcomes in Routine Evaluation.

Follow-up interviews were conducted with 22 participants. One
nonattending participant experienced a serious adverse event
confirmed as unrelated to the study, and two were unavailable
in the follow-up interview period due to significant life events.

Intervention as a whole was unacceptable. Some participantscommented that the design of the site used a large amount ofblue and white, giving it the feel of a UK-based NHS website,which had negative associations for some.

Study Objective 5 (Acceptability and Usability)

A summary of the feedback specifically relating to trial
procedures, which was rated as unacceptable or less usable, isshown in Textbox 3.

Feedback during the baseline interview was broadly positive,
and no participant indicated that trial procedures or the NEON

Textbox 3. Identified issues relating to Narrative Experiences Online trial procedures.
Identified Issues•

Participant Information Sheet (PIS): the PIS was too long. The focus on information about possible harms felt excessively negative and off-putting.
A plain English summary would be helpful.

•

Informed consent form (ICF): recording initials in the ICF created anxiety about confidentiality for one participant.

•

Demographics form: the small number of categories for ethnicity was perceived as discriminatory. Some participants wanted to know whether
the demographic information would be used in the recommender system.

•

Manchester Short Assessment of Quality of Life (MANSA): some items (eg, “How satisfied are you with your sex life?”) were personal,
embarrassing, or uncomfortable to fill in, especially with a researcher present. Submitting the form and then pressing the back button displayeda blank MANSA form, so it was not clear whether the data were successfully submitted.

•

CORE-10: several participants felt distressed by a question on suicidality, and one suggested the “I’m upset” button should be available fromthis form onward. A suggestion was made that items be rated 1-10 instead of 1-5 and not to reverse-score some items.

A summary of the feedback relating to the NEON Intervention
is shown in Textbox 4.
Textbox 4. Identified issues relating to the Narrative Experiences Online Intervention.
Identified Issues•

Welcome to NEON page: this should be preceded by a message thanking the participant for completing the enrollment process.

•Useful information page: this page includes the text, “It is normal to have a range of strong emotional responses to stories.” This made the stories
sound scary and made the participant feel abnormal if they did not have a strong emotional response.

•

Initial information page (collects information about the participant for use in the recommender system and allows proactive narrative blocking):
more explanation was needed about what this was for. It was not clear what role information would have in matching people to stories. It wasdifficult to understand the difference between this and the demographics form. Some participants felt they had already provided this information.
The titles of content warnings were considered to be very blunt and might cause distress. To get to the Initial Information page, participants haveto navigate a substantial number of prior pages without seeing any recovery narratives, some showing warnings about harm. This might cause
them to doubt the value of recovery narratives.

•

First story page (shows an initial recovery story selected to have no content warnings): it felt quite abrupt to suddenly encounter this story after
so many pages of information and data entry. More information was needed about the narrator—there was no explanation as to why this particularstory had been chosen.

•

Narrative feedback questions: six participants found it difficult to separate the meaning of the two narrative feedback questions on the connection
to the narrator or to the story. Several participants did not understand what the purpose of the narrative feedback questions was.

•“Get me out of here” button: in total, 15 out of 25 participants explicitly indicated that they liked the inclusion of a button with the named “Getme out of here”; 8 felt that the name was too dramatic and that a more neutral name such as “Quick exit” would be better.

•“I’m upset” page: a third option was missing—how to access informal peer support for someone who wants to talk to others but does not wantto contact a formal service. Give information about the local crisis team.

•Content warnings: in total, 15 participants felt that these were a good idea to include, but 1 participant suggested all stories should have content
warnings and 2 participants suggested that the current content warnings do not sufficiently capture eating disorders.

Regarding the acceptability of web-based voucher payments
for trial participation, 15 participants indicated that this was
acceptable, one indicated that web-based vouchers restrictedchoice, and one mistakenly thought that vouchers had to be
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redeemed in a range of shops). In relation to usage prompts,
answers included weekly reminders to check in, notificationsof new stories, messages sent if the user had not logged in fora while, and messages thanking them for using the system.
Messages could be sent by email or SMS text messages.
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Feedback in follow-up interviews about using the NEON
Intervention was broadly positive, and some participants
indicated that access to the interface had helped them with theirmental health problems. Some participants wanted direct accessto what they described as inspirational stories to help lift theirmood when they were feeling low. A few participants lost theirlog-in details, which was a sufficient barrier that they stopped
using the system despite the availability of a password reset
option. Some reported enjoying access to stories but failing tofind someone like them, indicating a need for more diversity in
the NEON Collection.

Study Objective 4 (Narrative Feedback) and Study
Objective 6 (NEON Intervention Usage)
Participants accessed 330 narratives, of which 253 (76.6%) wereselected by the participants and 77 (23.3%) were accessed by
the participants asking for a randomly selected narrative.
Narrative feedback was provided for 31.8% (105/330) of
narratives accessed. The mean length of usage (ie, days fromfirst to last log-in) was 9.8 (SD 9.4), with a median of 9 (IQR
1-16) and range of 1-28. At least one narrative was accessed by
25 participants in week 1, 6 participants in week 2, 4 participantsin week 3, and 2 participants in week 4. The mean number ofsessions was 2.7 (SD 1.9), with a median of 2 (IQR 2-3) andrange of 1-8. The logged data on narrative access are
summarized in Table 4.

Table 4. Narrative accesses calculated from logged data about prototype usage by participants (n=25).
Parameter

Weeks 1-4

Week 1

Week 2

Week 3

Week 4

Total narratives accessed per participant
Mean (SD)13.2 (10.7)

10.1 (7.6)

6.6 (3.8)

7.3 (7.6)

4 (1.4)

Median (IQR)

9 (5-18)

7 (4-14)

6 (4-10)5 (2-13)

4 (3-5)

Range

3-42

2-30

2-12

1-18

3-5

The mean number of unique narratives accessed was 9.2 (SD6.3), with a median of 7 (IQR 4-13), which shows thatparticipants accessed some narratives multiple times. Other key
findings include that the function to select a random narrative
was used, that usage reduces over the 4-week period, that noparticipant accessed all available narratives, and that narrative
feedback was only provided for a third of the narratives
accessed.

6.

7.

8.

Modifications Made Following Research Study 2
Eight modifications to the trial procedures were implemented
in light of the feedback collected through research study 2:
1.

2.

3.

4.
5.

To reduce the length of the participant information sheet,some items were restructured to present summary text only,with the option to expand to complete the text if desired.
To allow anonymity, the informed consent form was
modified to require yes or no responses rather than initials
and to indicate that the person providing consent can use
an email address that does not include their name if theywish. These changes are in keeping with the UK HealthResearch Authority guidance on seeking consent byelectronic means [83].
To reduce usage barriers arising from losing log-in details,
a participant can request that all necessary access details(ie, website address, email log-in, and chosen password)
be sent to their email address as soon as they have given
consent.
Short messages of a maximum of two paragraphs wereadded to explain the purpose of each trial procedure.
To clarify the role of baseline data collection, a message isshown before the presentation of the forms, which statesthat the information is being collected to support trial
evaluation only and will not be used for matching narratives
to participants.

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To reduce participant discomfort and allow the participant
to complete web-based forms in private if they wish, thesame message also indicates that some questions might beperceived as sensitive.
To address concerns about ethnicity, subcategories wereadded, consistent with ethnicity guidance from the United
Kingdom Office for National Statistics [84].
To support understanding of the data being collected inrelation to trial procedures, a title is provided to describe
the information that will be collected (eg, Information about
you for the trial demographics form) and a subtitle isprovided to describe the role of this information in the trial(eg, This information will help us understand who is taking
part in our trials).

To produce a final version of the NEON Intervention, thefollowing six modifications were implemented based on thefindings presented in this paper. These modifications were
included in the NEON Intervention version deployed in the
NEON trials [27].
1.

2.
3.

Response rates to the narrative feedback questions werelower than anticipated. To reduce burden and hence
potentially increase completion of narrative feedback data,
the two questions on connection described in research study
1 were made optional and the interface was adjusted
accordingly. The rating scale for all feedback was simplified
to a 4-point scale, for example, hope was changed to −1(less hopeful than before), 0 (no change), 1 (a bit more
hopeful), and 2 (much more hopeful).
To reflect the NEON Impact Model, two optional narrative
feedback questions on learning and empathy were added.
For participants who wanted support without involving
formal mental health services, the “I’m upset” page was
extended with information about online peer support
services. Services were selected by the research team based
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4.

5.

6.

on features provided to support user safety, such as
moderation of discussions and reporting mechanisms in theevent of receiving abusive or inappropriate messages.
To address concerns about the blunt nature of the content
warning systems and to clarify which content warning
related to eating disorders, the titles of content warnings
were updated. Final content warnings comprised thefollowing: abuse or sexual violence; loss of life orendangerment to life; self-harm including eating disorders;violence or aggression; and injustice, prejudice, anddiscrimination.
To address the negative perceptions of some participantsthat the NEON Intervention looked like a UK NHS website,a study logo was produced using a color scheme that is
distinctively different from that employed by the UK NHS
and was integrated into the NEON Intervention. The color
scheme adopted by the NEON Intervention was updated tomatch the logo.
To improve accessibility, the “Welcome to NEON” and“Useful information” pages were redrafted in collaboration
with the NEON LEAP.

Discussion
Principal Findings
The NEON Impact Model developed through knowledge
integration activity 1 guided the development of the NEON
Intervention, including through informing the selection of
narrative feedback questions and through the adoption of a
mission to build a large, heterogeneous collection, given that
this might increase opportunities for comparison, learning, andempathy for a diverse user base. The Impact Model is relevant
to interventions that integrate recovery narratives. It might also
guide the selection of recovery narratives by clinicians who
integrate these into their practice, for example, by structuring
discussions with clients as to which narratives might have themost positive impact.
The curation principles developed through knowledge
integration activity 2 are grounded in the practical experienceof building a substantial preliminary collection and reportingthem supports the transparent management of a collection. This
study demonstrates that the VOICES typology can be used asa guideline for collection reporting [24]. These principles canbe adopted by other collections.
The experimental evaluation of preliminary narrative feedbackquestions presented in research study 1 provides evidence thatthese questions can be used as a mechanism to collect feedbackon the impact of narratives, and findings on response rates
collected in research study 2 have allowed their design to berefined by categorizing questions as optional or mandatory. The
final set of questions may be used in other interventions that
require narrative feedback. Research study 1 identified a small
number of narratives that were hope-promoting for all in thesample but mostly confirmed our prior findings that narratives
are not universally hope-promoting [36]. The study also
identified substantial participant variability in response to mostnarratives, indicating the need to tailor narratives to the needsof participants.
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Slade et al
The formal evaluation of a prototype of the NEON Intervention
in research study 2 provides evidence that it is feasible to use
this intervention in a clinical trial and has allowed for therefinement of intervention and trial procedures. Knowledge
about the acceptability of web-based trial procedures designed
for the NEON trials can inform the design of web-based trial
procedures for other web-based interventions, particularly in
relation to the selection of measures where we found evidence
that measures designed for delivery on paper were associatedwith distress for some participants. Safety measures developed
for the NEON Intervention in knowledge integration activity 3
might also be more generally applicable to other web-based
interventions, particularly those presenting challenging
materials.
The immediate clinical relevance of these findings is in
informing the NEON randomized controlled trials [27]. The
NEON Intervention has been finalized and is now (2020-2022)
being evaluated in 3 randomized controlled trials that run inparallel and share the same digital infrastructure. Each trial isdesigned for participants who may or may not use mental healthservices and who may or may not choose to receive support
from mental health workers in using the intervention.
The long-term generalizability of the findings includes theextension of the NEON Intervention from a mental health focus
to (1) other clinical populations, including chronic disorders
and palliative and end-of-life care, (2) other marginalized
communities beyond health care who may benefit from accessto narratives from their community, and (3) other languages
and cultures. For any extension, the content of the NEON
Collection will need to be widened, and such a program iscurrently underway to develop a multilanguage repository ofIndian mental health recovery narratives, called NEON
Collection India.

Strengths and Limitations
The strengths of this study are the mixed methods design tosystematically address design issues, the use of multiple groupsof participants with diverse mental health problems andexperiences of service use, the consistent involvement of people
with lived experience of mental health problems at every stage(including the research team and the NEON LEAP), and theuse of web-based prototyping to bring concepts to life to obtain
ecologically valid feedback.
Limitations of this study include the use of a single regionalsite for recruitment, the absence of a structured design approachsuch as the Double Diamond methodology of the Design
Council, and the absence of testing of the final version of thetrial procedures and NEON Intervention. This last limitation is
being addressed through an internal pilot in the NEON Trial.

Comparison With Prior Work
Given that sharing a recovery narrative is a core component of
the work of peer specialists [14], the NEON Impact Modelmight be compared with models created to describe the impactof peer workers. Gillard et al [85] have identified that change
comes about through a peer worker (1) building trusting
relationships based on shared lived experience, (2) role modelingindividual recovery and living well with mental health problems,
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Slade et al

and (3) engaging service users with mental health services andthe community. These are more relational mechanisms than ourown mechanism of reflecting on personal experience,
presumably due to the recorded nature of recovery narratives
that are being received. Synthesizing partial models presented
in prior NEON studies [1,36,38] has enabled us to develop a
more comprehensive understanding of what can be learned fromrecovery narratives and what might moderate the impact ofnarratives.

system. The need to tailor digital interventions to recipients haslong been recognized in health research, including in studies
on stroke rehabilitation technologies [80]. Alankus et al [86]selected a target technology (rehabilitation gaming) andsystematically demonstrated how to select properties of thetechnology that might be tailored. During the NEON trials,
logging data will be collected from the recommender system,
and an analysis of these data should reveal effective approaches
to tailoring narrative selections to trial participants.

The variation in feedback received against individual narratives,with some participants finding the same narrative
hope-promoting and others finding it pessimism-promoting,suggests a need for the tailoring of narrative selection to theneeds of individuals and validates the choice of a recommender

Conclusions
Recorded mental health recovery narratives can be integrated
into web-based interventions, and it is feasible to conduct anevaluation of such interventions in a clinical trial.

Acknowledgments
This paper is independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants forApplied Research Programme (Programme Grants for Applied Research, Personal Experience as a Recovery Resource in Psychosis:
NEON Programme, RP-PG-0615-20016). MS acknowledges the support of the Center for Mental Health and Substance Abuse,
University of South-Eastern Norway, and the NIHR Nottingham Biomedical Research Centre. JR acknowledges the support of
the NIHR Collaboration for Leadership in Applied Health Research and Care East Midlands, now recommissioned as the NIHR
Applied Research Collaboration East Midlands. CB and AC are supported by the Economic and Social Research Council (grant
ES/P000711/1). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Healthand Social Care.

Conflicts of Interest
None declared.

References
1.

2.
3.
4.

5.

6.

7.

8.

9.

10.

Rennick-Egglestone S, Morgan K, Llewellyn-Beardsley J, Ramsay A, McGranahan R, Gillard S, et al. Mental healthrecovery narratives and their impact on recipients: systematic review and narrative synthesis. Can J Psychiatry 2019
Oct;64(10):669-679 [FREE Full text] [doi: 10.1177/0706743719846108] [Medline: 31046432]
Chou WS, Hunt Y, Folkers A, Augustson E. Cancer survivorship in the age of YouTube and social media: a narrative
analysis. J Med Internet Res 2011;13(1):e7 [FREE Full text] [doi: 10.2196/jmir.1569] [Medline: 21247864]
Ressler PK, Bradshaw YS, Gualtieri L, Chui KK. Communicating the experience of chronic pain and illness throughblogging. J Med Internet Res 2012 Oct 23;14(5):e143 [FREE Full text] [doi: 10.2196/jmir.2002] [Medline: 23092747]
McGranahan R, Rennick-Egglestone S, Ramsay A, Llewellyn-Beardsley J, Bradstreet S, Callard F, et al. Curation of mental
health recovery narrative collections: systematic review and qualitative synthesis. JMIR Ment Health 2019 Oct
04;6(10):e14233 [FREE Full text] [doi: 10.2196/14233] [Medline: 31588912]
Thomas N, Farhall J, Foley F, Leitan ND, Villagonzalo K, Ladd E, et al. Promoting personal recovery in people withpersisting psychotic disorders: development and pilot study of a novel digital intervention. Front Psychiatry 2016;7:196[FREE Full text] [doi: 10.3389/fpsyt.2016.00196] [Medline: 28066271]
Heilemann MV, Martinez A, Soderlund PD. A mental health storytelling intervention using transmedia to engage Latinas:
grounded theory analysis of participants' perceptions of the story's main character. J Med Internet Res 2018 May
02;20(5):e10028 [FREE Full text] [doi: 10.2196/10028] [Medline: 29720357]
Briant KJ, Halter A, Marchello N, Escareño M, Thompson B. The power of digital storytelling as a culturally relevant
health promotion tool. Health Promot Pract 2016 Nov 10;17(6):793-801 [FREE Full text] [doi: 10.1177/1524839916658023][Medline: 27402721]
Greenhalgh T, Collard A, Begum N. Sharing stories: complex intervention for diabetes education in minority ethnic groups
who do not speak English. Br Med J 2005 Mar 19;330(7492):628 [FREE Full text] [doi: 10.1136/bmj.330.7492.628][Medline: 15774990]
Roe J, Brown S, Yeo C, Rennick-Egglestone S, Repper J, Ng F, et al. Opportunities, enablers, and barriers to the use ofrecorded recovery narratives in clinical settings. Front Psychiatry 2020 Oct 30;11:589731 [FREE Full text] [doi:10.3389/fpsyt.2020.589731] [Medline: 33192738]
Williams A, Fossey E, Farhall J, Foley F, Thomas N. Recovery after psychosis: qualitative study of service user experiencesof lived experience videos on a recovery-oriented website. JMIR Ment Health 2018 May 08;5(2):e37 [FREE Full text] [doi:10.2196/mental.9934] [Medline: 29739737]

https://formative.jmir.org/2021/5/e24417

XSL• FO
RenderX

JMIR Form Res 2021 | vol. 5 | iss. 5 | e24417 | p. 20(page number not for citation purposes)

JMIR FORMATIVE RESEARCH
11.
12.

13.

14.
15.

16.
17.
18.
19.
20.
21.
22.
23.
24.

25.

26.
27.

28.
29.

30.
31.

32.
33.
34.

35.

Manuvinakurike R, Velicer WF, Bickmore TW. Automated indexing of internet stories for health behavior change: weightloss attitude pilot study. J Med Internet Res 2014;16(12):e285 [FREE Full text] [doi: 10.2196/jmir.3702] [Medline: 25491243]
Benish-Weisman M, Wu LM, Weinberger-Litman SL, Redd WH, Duhamel KN, Rini C. Healing stories: narrative
characteristics in cancer survivorship narratives and psychological health among hematopoietic stem cell transplant survivors.
Palliat Support Care 2014 Aug;12(4):261-267. [doi: 10.1017/S1478951513000205] [Medline: 23942197]
Llewellyn-Beardsley J, Rennick-Egglestone S, Callard F, Crawford P, Farkas M, Hui A, et al. Characteristics of mental
health recovery narratives: systematic review and narrative synthesis. PLoS One 2019 Mar 28;14(3):e0214678 [FREE Fulltext] [doi: 10.1371/journal.pone.0214678] [Medline: 30921432]
Cronise R, Teixeira C, Rogers ES, Harrington S. The peer support workforce: results of a national survey. Psychiatr Rehabil
J 2016 Sep;39(3):211-221. [doi: 10.1037/prj0000222] [Medline: 27618458]
Pitt V, Lowe D, Hill S, Prictor M, Hetrick SE, Ryan R, et al. Consumer-providers of care for adult clients of statutory
mental health services. Cochrane Database Syst Rev 2013 Mar 28(3):CD004807. [doi: 10.1002/14651858.CD004807.pub2][Medline: 23543537]
Riding the storms. Recovery Devon, UK. URL: https://library.recoverydevon.co.uk/document/riding-the-storms/ [accessed2021-05-13]
Johnson MD, Dodds N. The plea for the silent. Med J Aust 1957 Oct;2(15):547. [doi: 10.5694/j.1326-5377.1957.tb60051.x]
Patient stories: stories of recovery. South London and Maudsley NHS Foundation Trust. 2017. URL: https://www.slam.nhs.uk/
patients-and-carers/patient-information/patient-stories [accessed 2021-05-13]
Smith R. Stop Paddling/Start Sailing: A Journey and Some Ideas. Baltimore, Maryland, United States: America Star Books;
2004:1-64.
The mental illness and bipolar video you need to watch. Chris Thompson Photography. 2017. URL: https://www.youtube.com/
watch?v=LuFbEKQME4A [accessed 2019-10-24]
Aisha's schizophrenia story. UPMC Western Psychiatric Hospital. 2019. URL: https://www.youtube.com/
watch?v=uJNWQ7G7Eko [accessed 2019-10-24]
Out of darkness: Joanna's story. Sunnybrook Hospital. 2018. URL: https://www.youtube.com/watch?v=lIjNDpl2VBs[accessed 2019-10-24]
Erculj N. 3 years after mental hospital. An Honest Chat About My Mental Health & Recovery. 2017. URL: https://www.
youtube.com/watch?v=pQZCcPyZMYE [accessed 2019-10-24]
Yeo C, Hare-Duke L, Rennick-Egglestone S, Bradstreet S, Callard F, Hui A, et al. The VOICES typology of curatorial
decisions in narrative collections of the lived experiences of mental health service use, recovery, or madness: qualitative
study. JMIR Ment Health 2020 Sep 18;7(9):e16290 [FREE Full text] [doi: 10.2196/16290] [Medline: 32945771]
Telling your story - blogging or vlogging for mind. Mind. URL: https://www.mind.org.uk/information-support/your-stories/
about-the-mind-blog/telling-your-story-blogging-or-vlogging-for-mind/ [accessed 2019-02-22] [WebCite Cache ID
76NeTwf6L]
Personal stories. Here to Help. URL: https://www.heretohelp.bc.ca/personal-stories [accessed 2020-08-27]
Rennick-Egglestone S, Elliott R, Smuk M, Robinson C, Bailey S, Smith R, et al. Impact of receiving recorded mental healthrecovery narratives on quality of life in people experiencing psychosis, people experiencing other mental health problems
and for informal carers: Narrative Experiences Online (NEON) study protocol for three randomised controlled trials. Trials
2020 Jul 20;21(1):661 [FREE Full text] [doi: 10.1186/s13063-020-04428-6] [Medline: 32690105]
Slade M, Blackie L, Longden E. Personal growth in psychosis. World Psychiatry 2019 Feb;18(1):29-30 [FREE Full text][doi: 10.1002/wps.20585] [Medline: 30600621]
Slade M, Rennick-Egglestone S, Blackie L, Llewellyn-Beardsley J, Franklin D, Hui A, et al. Post-traumatic growth inmental health recovery: qualitative study of narratives. BMJ Open 2019 Jun 28;9(6):e029342 [FREE Full text] [doi:10.1136/bmjopen-2019-029342] [Medline: 31256037]
Shaw L, Homewood J. The effect of eating disorder memoirs in individuals with self-identified eating pathologies. J Nerv
Ment Dis 2015 Aug;203(8):591-595. [doi: 10.1097/NMD.0000000000000347] [Medline: 26230647]
Larkey LK, McClain D, Roe DJ, Hector RD, Lopez AM, Sillanpaa B, et al. Randomized controlled trial of storytellingcompared to a personal risk tool intervention on colorectal cancer screening in low-income patients. Am J Health Promot
2015;30(2):59-70. [doi: 10.4278/ajhp.131111-QUAN-572] [Medline: 25615708]
Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med 1993 Apr 15;118(8):622-629.
[doi: 10.7326/0003-4819-118-8-199304150-00009] [Medline: 8452328]
Priebe S, Huxley P, Knight S, Evans S. Application and results of the manchester short assessment of quality of life (Mansa).
Int J Soc Psychiatry 2016 Jul 27;45(1):7-12. [doi: 10.1177/002076409904500102]
Llewellyn-Beardsley J, Rennick-Egglestone S, Bradstreet S, Davidson L, Franklin D, Hui A, et al. Not the story you want?
Assessing the fit of a conceptual framework characterising mental health recovery narratives. Soc Psychiatry Psychiatr
Epidemiol 2020 Mar;55(3):295-308. [doi: 10.1007/s00127-019-01791-x] [Medline: 31654089]
Serhal E, Crawford A, Cheng J, Kurdyak P. Implementation and utilisation of telepsychiatry in Ontario: a population-based
study. Can J Psychiatry 2017 Oct;62(10):716-725 [FREE Full text] [doi: 10.1177/0706743717711171] [Medline: 28541753]

https://formative.jmir.org/2021/5/e24417

XSL• FO
RenderX

Slade et al

JMIR Form Res 2021 | vol. 5 | iss. 5 | e24417 | p. 21(page number not for citation purposes)

JMIR FORMATIVE RESEARCH
36.

37.

38.

39.
40.

41.
42.
43.
44.
45.
46.

47.

48.
49.
50.

51.
52.

53.

54.
55.
56.
57.
58.

59.
60.

Rennick-Egglestone S, Ramsay A, McGranahan R, Llewellyn-Beardsley J, Hui A, Pollock K, et al. The impact of mental
health recovery narratives on recipients experiencing mental health problems: qualitative analysis and change model. PLoS
One 2019;14(12):e0226201 [FREE Full text] [doi: 10.1371/journal.pone.0226201] [Medline: 31834902]
Kogstad RE, Ekeland T, Hummelvoll JK. In defence of a humanistic approach to mental health care: recovery processes
investigated with the help of clients' narratives on turning points and processes of gradual change. J Psychiatr Ment Health
Nurs 2011 Aug;18(6):479-486. [doi: 10.1111/j.1365-2850.2011.01695.x] [Medline: 21749553]
Ng F, Charles A, Pollock K, Rennick-Egglestone S, Cuijpers P, Gillard S, et al. The mechanisms and processes of connection:
developing a causal chain model capturing impacts of receiving recorded mental health recovery narratives. BMC Psychiatry
2019 Dec 21;19(1):413 [FREE Full text] [doi: 10.1186/s12888-019-2405-z] [Medline: 31864315]
RITB - key principles. Recovery in the Bin. URL: https://recoveryinthebin.org/ritbkeyprinciples/ [accessed 2021-04-27]
Edwards BB, Burgess R, Thomas E. Neorecovery: a survivor led conceptualisation and critique. In: Proceedings of the25th International Mental Health Nursing Research Conference. 2019 Presented at: 25th International Mental Health Nursing
Research Conference; September 13, 2019; The Royal College of Nursing, London, UK.
Woods A, Hart A, Spandler H. The recovery narrative: politics and possibilities of a genre. Cult Med Psychiatry 2019 Mar
21. [doi: 10.1007/s11013-019-09623-y] [Medline: 30895516]
Fisher P, Lees J. Narrative approaches in mental health: preserving the emancipatory tradition. Health (London) 2016
Nov;20(6):599-615. [doi: 10.1177/1363459315600774] [Medline: 26304707]
Costa L, Voronka J, Landry D, Reid J, Mcfarlane B, Reville D, et al. “Recovering our Stories”: a small act of resistance.
Stud Soc Just 2012 Oct 16;6(1):85-101. [doi: 10.26522/ssj.v6i1.1070]
Macdonald S. A Companion to Museum Studies. Hoboken, New Jersey, United States: Wiley-Blackwell; 2006:1-592.
Kreps C. Indigenous curation, museums, and intangible cultural heritage. In: Intangible Heritage. Milton, United Kingdom:
Routledge; 2008:207-222.
Evidence standards framework for digital health technologies. National Institute for Health and Clinical Excellence. 2019.
URL: https://www.nice.org.uk/about/what-we-do/our-programmes/
evidence-standards-framework-for-digital-health-technologies [accessed 2021-04-27]
McClay C, Waters L, Schmidt U, Williams C. A survey of attitudes towards computerized self-help for eating disorders
within a community-based sample. Behav Cogn Psychother 2016 Jan;44(1):65-78. [doi: 10.1017/S1352465814000484][Medline: 25430776]
Cassidy L. Online communities of practice to support collaborative mental health practice in rural areas. Issues Ment Health
Nurs 2011;32(2):98-107. [doi: 10.3109/01612840.2010.535648] [Medline: 21247275]
Griffiths KM, Christensen H. Internet-based mental health programs: a powerful tool in the rural medical kit. Aust J Rural
Health 2007 Apr;15(2):81-87. [doi: 10.1111/j.1440-1584.2007.00859.x] [Medline: 17441815]
Gibson K, Simms D, O’Donnell S, Molyneaux H. Clinicians’ attitudes toward the use of information and communication
technologies for mental health services in remote and rural areas. In: Proceedings of the Canadian Society of TelehealthConference (CST 2009). 2009 Presented at: Canadian Society of Telehealth Conference (CST 2009); October 3-6, 2009;
Vancouver, Canada p. 1-14 URL: http://susanodo.ca/wp-content/uploads/2017/06/2009-CST-Gibson.pdf
Andersson G, Titov N. Advantages and limitations of internet-based interventions for common mental disorders. World
Psychiatry 2014 Feb;13(1):4-11 [FREE Full text] [doi: 10.1002/wps.20083] [Medline: 24497236]
Holmes EA, O'Connor RC, Perry VH, Tracey I, Wessely S, Arseneault L, et al. Multidisciplinary research priorities for
the COVID-19 pandemic: a call for action for mental health science. Lancet Psychiatry 2020 Apr 15 [FREE Full text] [doi:10.1016/S2215-0366(20)30168-1] [Medline: 32304649]
Hare-Duke L, Dening T, de Oliveira D, Milner K, Slade M. Conceptual framework for social connectedness in mental
disorders: systematic review and narrative synthesis. J Affect Disord 2019 Feb 15;245:188-199. [doi:10.1016/j.jad.2018.10.359] [Medline: 30396057]
Llewellyn-Beardsley J, Barbic S, Rennick-Egglestone S, Ng F, Roe J, Hui A, et al. INCRESE: development of an inventory
to characterize recorded mental health recovery narratives. J Recov Ment Health 2020;14(12):25-44 [FREE Full text]
Resnick P, Varian HR. Recommender systems. Commun ACM 1997 Mar;40(3):56-58. [doi: 10.1145/245108.245121]
Giacaglia G. Spotify's recommendation engine. 2019. URL: https://medium.com/datadriveninvestor/
behind-spotify-recommendation-engine-a9b5a27a935 [accessed 2019-10-18]
Highton-Williamson E, Priebe S, Giacco D. Online social networking in people with psychosis: a systematic review. Int J
Soc Psychiatry 2015 Feb;61(1):92-101. [doi: 10.1177/0020764014556392] [Medline: 25381145]
Alvarez-Jimenez M, Alcazar-Corcoles MA, González-Blanch C, Bendall S, McGorry PD, Gleeson JF. Online, social media
and mobile technologies for psychosis treatment: a systematic review on novel user-led interventions. Schizophr Res 2014
Jun;156(1):96-106. [doi: 10.1016/j.schres.2014.03.021] [Medline: 24746468]
Windell D, Norman RM. A qualitative analysis of influences on recovery following a first episode of psychosis. Int J Soc
Psychiatry 2013 Aug;59(5):493-500. [doi: 10.1177/0020764012443751] [Medline: 22532125]
Hodgekins J, Fowler D. CBT and recovery from psychosis in the ISREP trial: mediating effects of hope and positive beliefs
on activity. Psychiatr Serv 2010 Mar;61(3):321-324. [doi: 10.1176/ps.2010.61.3.321] [Medline: 20194414]

https://formative.jmir.org/2021/5/e24417

XSL• FO
RenderX

Slade et al

JMIR Form Res 2021 | vol. 5 | iss. 5 | e24417 | p. 22(page number not for citation purposes)

JMIR FORMATIVE RESEARCH
61.
62.

63.

64.
65.
66.

67.
68.
69.
70.
71.
72.
73.
74.
75.
76.
77.
78.

79.
80.
81.

82.

83.

84.
85.

86.

Fung KM, Tsang HW, Corrigan PW. Self-stigma of people with schizophrenia as predictor of their adherence to psychosocial
treatment. Psychiatr Rehabil J 2008;32(2):95-104. [doi: 10.2975/32.2.2008.95.104] [Medline: 18840563]
Bødker S. When second wave HCI meets third wave challenges. In: Proceedings of the 4th Nordic Conference on
Human-Computer Interaction: Changing Roles. 2006 Presented at: NORDICHI06: The 4th Nordic Conference on
Human-Computer Interaction; October, 2006; Oslo Norway p. 1-8. [doi: 10.1145/1182475.1182476]
Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions.
Medical Research Council. 2019. URL: https://mrc.ukri.org/documents/pdf/complex-interventions-guidance/ [accessed2021-04-27]
Beauchamp TL, Childress JF. Principles of Biomedical Ethics. New York: Oxford University Press; 2001.
Bell J. Harmful or helpful? The role of the internet in self-harming and suicidal behaviour in young people. Ment Health
Rev J 2014 Mar 05;19(1):61-71. [doi: 10.1108/MHRJ-05-2013-0019]
Jennings H, Slade M, Bates P, Munday E, Toney R. Best practice framework for Patient and Public Involvement (PPI) in
collaborative data analysis of qualitative mental health research: methodology development and refinement. BMC Psychiatry
2018 Jun 28;18(1):213 [FREE Full text] [doi: 10.1186/s12888-018-1794-8] [Medline: 29954373]
NEON collection web page. URL: https://www.researchintorecovery.com/research/neon/neoncollection/ [accessed2021-05-11]
Bowen GA. Document analysis as a qualitative research method. Qual Res J 2009 Aug 03;9(2):27-40. [doi:10.3316/qrj0902027]
Moran TP, Carroll JM. Design Rationale: Concepts, Techniques, and Use. Boca Raton, Florida, United States: CRC Press;
1996:1-504.
Boysen GA. Evidence-based answers to questions about trigger warnings for clinically-based distress: a review for teachers.
Scholarship of Teaching and Learning in Psychology 2017;3(2):163-177. [doi: 10.1037/stl0000084]
Sanson M, Strange D, Garry M. Trigger warnings are trivially helpful at reducing negative affect, intrusive thoughts, andavoidance. Clin Psychol Sci 2019 Mar 04;7(4):778-793. [doi: 10.1177/2167702619827018]
Beverly EA, Díaz S, Kerr AM, Balbo JT, Prokopakis KE, Fredricks TR. Students' perceptions of trigger warnings in medical
education. Teach Learn Med 2018 Jul 28;30(1):5-14. [doi: 10.1080/10401334.2017.1330690] [Medline: 28753041]
Gainsburg I, Earl A. Trigger warnings as an interpersonal emotion-regulation tool: avoidance, attention, and affect dependon beliefs. J Experiment Soc Psychol 2018 Nov;79:252-263. [doi: 10.1016/j.jesp.2018.08.006]
Kostouros P, Wenzel J. Depictions of suffering in the postsecondary classroom. Traumatology 2017 Sep;23(3):250-257.
[doi: 10.1037/trm0000110]
Shannon PJ, Simmelink-McCleary J, Im H, Becher E, Crook-Lyon RE. Experiences of stress in a trauma treatment course.
J Soc Work Edu 2014 Oct;50(4):678-693. [doi: 10.1080/10437797.2014.947901]
Herth K. Abbreviated instrument to measure hope: development and psychometric evaluation. J Adv Nurs 1992
Oct;17(10):1251-1259. [doi: 10.1111/j.1365-2648.1992.tb01843.x] [Medline: 1430629]
Mayer RE. The promise of multimedia learning: using the same instructional design methods across different media. Learn
Instruct 2003 Apr;13(2):125-139. [doi: 10.1016/S0959-4752(02)00016-6]
Barkham M, Bewick B, Mullin T, Gilbody S, Connell J, Cahill J, et al. The CORE-10: a short measure of psychologicaldistress for routine use in the psychological therapies. Couns Psychother Res 2013 Mar;13(1):3-13. [doi:10.1080/14733145.2012.729069]
Fonteyn ME, Kuipers B, Grobe SJ. A description of think aloud method and protocol analysis. Qual Health Res 2016 Jul
01;3(4):430-441. [doi: 10.1177/104973239300300403]
Rennick-Egglestone S. Tailoring technologies to the rehabilitational needs of stroke survivors. PhD thesis, University of
Nottingham. 2014. URL: http://eprints.nottingham.ac.uk/14153/ [accessed 2021-04-27]
Balaam M, Egglestone SR, Fitzpatrick G, Rodden T, Hughes AM, Wilkinson A, et al. Motivating mobility: designing for
lived motivation in stroke rehabilitation. In: Proceedings of the SIGCHI Conference on Human Factors in Computing
Systems. 2011 Presented at: CHI '11: CHI Conference on Human Factors in Computing Systems; May, 2011; Vancouver
BC Canada p. 3073-3082. [doi: 10.1145/1978942.1979397]
European Commission. Directive 2000/31/EC of the European Parliament and of the Council of 8 June 2000 on certain
legal aspects of information society services, in particular electronic commerce, in the internal market. The European
Parliament and the Council of the European Union 2000:2-32. [doi: 10.5040/9781472559500.0004]
Joint statement on seeking consent by electronic methods. Health Research Authority and Medicines and Healthcare Products
Regulatory Agency. 2018. URL: https://www.hra.nhs.uk/documents/1588/hra-mhra-econsent-statement-sept-18.pdf [accessed2021-04-27]
National Cancer Institute. Ethnic group. NCI Thesaurus, Code C16564 2020. [doi: 10.32388/8t6czz]
Gillard S, Gibson SL, Holley J, Lucock M. Developing a change model for peer worker interventions in mental healthservices: a qualitative research study. Epidemiol Psychiatr Sci 2015 Oct;24(5):435-445. [doi: 10.1017/S2045796014000407][Medline: 24992284]
Alankus G, Lazar A, May M, Kelleher C. Towards customizable games for stroke rehabilitation. In: Proceedings of the
SIGCHI Conference on Human Factors in Computing Systems. 2010 Presented at: CHI '10: CHI Conference on Human

https://formative.jmir.org/2021/5/e24417

XSL• FO
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JMIR Form Res 2021 | vol. 5 | iss. 5 | e24417 | p. 23(page number not for citation purposes)

JMIR FORMATIVE RESEARCH

Slade et al

Factors in Computing Systems; April, 2010; Atlanta Georgia USA p. 2113-2122 URL: https://doi.org/10.1145/1753326.
1753649 [doi: 10.1145/1753326.1753649]

Abbreviations
CSG: Collection Steering Group
HHI: Herth Hope Index
INCRESE: Inventory of Characteristics of Recovery Stories
LEAP: Lived Experience Advisory Panel
NEON: Narrative Experiences Online
NHS: National Health Service
NIHR: National Institute for Health Research
VOICES: Values and motivations, Organization, Inclusion and exclusion, Control and collaboration, Ethics andlegal, Safety and well-being

Edited by G Eysenbach; submitted 20.09.20; peer-reviewed by J Farhall, E Toki, O Ness; comments to author 24.10.20; revised
version received 06.11.20; accepted 12.11.20; published 27.05.21
Please cite as:
Slade M, Rennick-Egglestone S, Llewellyn-Beardsley J, Yeo C, Roe J, Bailey S, Smith RA, Booth S, Harrison J, Bhogal A, Penas
Morán P, Hui A, Quadri D, Robinson C, Smuk M, Farkas M, Davidson L, van der Krieke L, Slade E, Bond C, Nicholson J, Grundy
A, Charles A, Hare-Duke L, Pollock K, Ng F
Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the
Narrative Experiences Online (NEON) Intervention
JMIR Form Res 2021;5(5):e24417
URL: https://formative.jmir.org/2021/5/e24417
doi: 10.2196/24417
PMID:©Mike Slade, Stefan Rennick-Egglestone, Joy Llewellyn-Beardsley, Caroline Yeo, James Roe, Sylvia Bailey, Roger Andrew
Smith, Susie Booth, Julian Harrison, Adaresh Bhogal, Patricia Penas Morán, Ada Hui, Dania Quadri, Clare Robinson, Melanie
Smuk, Marianne Farkas, Larry Davidson, Lian van der Krieke, Emily Slade, Carmel Bond, Joe Nicholson, Andrew Grundy,
Ashleigh Charles, Laurie Hare-Duke, Kristian Pollock, Fiona Ng. Originally published in JMIR Formative Research(https://formative.jmir.org), 27.05.2021. This is an open-access article distributed under the terms of the Creative Commons
Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction
in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete
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