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Impact of receiving recorded mental health recovery narratives on quality of life in people experiencing non-psychosis mental health problems (NEON-O Trial): updated randomised controlled trial protocol.

ABSTRACT:

Background

Mental health recovery narratives are first-person lived experience accounts of recovery from mental health problems, which refer to events or actions over a period of time, and which include elements of adversity or struggle, and also self-defined or observable strengths, successes, or survival. Recorded recovery narratives are those presented in invariant form, including text, audio, or video. In a previous publication, we presented a protocol for three pragmatic trials of the Narrative Experiences Online (NEON) Intervention, a web application recommending recorded recovery narratives to participants. The aim of the definitive NEON Trial was to understand whether the NEON Intervention benefitted people with experience of psychosis. The aim of the smaller NEON-O and NEON-C trials was to evaluate the feasibility of conducting definitive trials of the NEON Intervention with people (1) experiencing non-psychosis mental health problems and (2) who informally care for others experiencing mental health problems. An open recruitment strategy with a 60-week recruitment period was developed. Recruitment for the NEON Trial and NEON-O Trial targeted mental health service users and people not using mental health services. The NEON Trial recruited to time and target. The NEON-O Trial achieved its target in 10 weeks. Analysis considered by a Programme Steering Committee after the target was achieved demonstrated a definitive result could be obtained if the trial was adapted for recruitment to continue. The UK Health Research Authority approved all needed amendments following ethical review.

Purpose of this article

To describe the decision-making process for amending the NEON-O Trial and to describe amendments made to the NEON-O Trial to enable a definitive result. The article describes amendments to the aims, objectives, design, power calculation, recruitment rate, process evaluation design, and informed consent documents. The extended NEON-O Trial adopts analysis principles previously specified for the NEON Trial. The article provides a model for other studies adapting feasibility trials into definitive trials.

Trial registration

All trials prospectively registered. NEON Trial: ISRCTN11152837 . Registered on 13th August 2018. NEON-C Trial: ISRCTN76355273 . Registered on 9th January 2020. NEON-O Trial: ISRCTN63197153 . Registered on 9th January 2020. The NEON-O Trial ISRCTN was updated when amendments were approved. Amendment details: NOSA2, 30th October 2020.

SUBMITTER: Rennick-Egglestone S

PROVIDER: S-EPMC8800358 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ObjectivesIt is well known that mental health problems can recur even after effective treatment, leading to an understandable fear of illness recurrence (FIR) and mental health anxiety (MHA). These may themselves contribute to the process of relapse. This study aims to examine whether people recovering from psychosis have greater FIR than those recovering from common mental health problems or healthy controls. The study also hypothesized that there will be a relationship between FIR and MHA and that both these constructs will be associated with maladaptive coping behaviours. Finally, the relationship between mental defeat with FIR and psychological distress (anxiety and depression) will be examined.MethodA cross-sectional questionnaire design was employed. Thirty-nine participants in recovery from psychosis, eighty-two in recovery from other mental health difficulties, and sixty-one healthy controls aged 18-73 were recruited from NHS services and via social media. Self-report questionnaires measured mental defeat, mental health anxiety, fear of illness recurrence, maladaptive coping behaviours, and psychological distress.ResultsThose recovering from psychosis were found to more negatively evaluate the likely consequences of relapse than those recovering from common mental health problems or healthy controls. However, the levels of FIR in common mental health problems were also significantly elevated when compared to healthy controls. There were no other differences between these groups (in terms of mental defeat, anxiety, depression, social functioning, and maladaptive coping behaviours). The hypothesized relationship between FIR and MHA was also found, and both were associated with maladaptive coping behaviours. Mental defeat was associated with FIR and psychological distress (anxiety and depression).ConclusionsThis study found that those with psychosis experienced higher FIR than those with common mental health problems. Furthermore, people defining themselves as in recovery are worried about relapse and the extent of this is linked to mental health anxiety. Given that such responses may contribute to actual relapse, it is important that these issues are better understood and interventions developed to ameliorate them.Practitioner pointsFollowing recovery, fear of relapse may be particularly high in those with experience of psychosis; it is also present in those with common mental health problems The importance of this observation lies in the issue that anxiety about relapse may initiate a self-fulfilling process, with increased anxiety worsening symptoms and vice versa. Cognitive-behavioural therapy for health anxiety may be beneficial to those experiencing high levels of mental health anxiety. Cognitions related to relapse need to be explored and addressed both in further research and, when clearly identified, may be a target during relapse-prevention planning.

Project description:BackgroundMental health recovery narratives are a core component of recovery-oriented interventions such as peer support and anti-stigma campaigns. A substantial number of recorded recovery narratives are now publicly available online in different modalities and in published books. Whilst the benefits of telling one's story have been investigated, much less is known about how recorded narratives of differing modalities impact on recipients. A previous qualitative study identified connection to the narrator and/or to events in the narrative to be a core mechanism of change. The factors that influence how individuals connect with a recorded narrative are unknown. The aim of the current study was to characterise the immediate effects of receiving recovery narratives presented in a range of modalities (text, video and audio), by establishing the mechanisms of connection and the processes by which connection leads to outcomes.MethodA study involving 40 mental health service users in England was conducted. Participants were presented with up to 10 randomly-selected recovery narratives and were interviewed on the immediate impact of each narrative. Thematic analysis was used to identify the mechanisms of connection and how connection leads to outcome.ResultsReceiving a recovery narrative led participants to reflect upon their own experiences or those of others, which then led to connection through three mechanisms: comparing oneself with the narrative and narrator; learning about other's experiences; and experiencing empathy. These mechanisms led to outcomes through three processes: the identification of change (through attending to narrative structure); the interpretation of change (through attending to narrative content); and the internalisation of interpretations.ConclusionsThis is the first study to identify mechanisms and processes of connection with recorded recovery narratives. The empirically-based causal chain model developed in this study describes the immediate effects on recipients. This model can inform selection of narratives for use in interventions, and be used to support peer support workers in recounting their own recovery narratives in ways which are maximally beneficial to others.

Project description:BackgroundNarratives of recovery from mental health distress have played a central role in the establishment of the recovery paradigm within mental health policy and practice. As use of recovery narratives increases within services, it is critical to understand how they have been characterised, and what may be missing from their characterisation thus far. The aim of this review was to synthesise published typologies in order to develop a conceptual framework characterising mental health recovery narratives.MethodA systematic review was conducted of published literature on the characteristics of mental health recovery narratives. Narrative synthesis involved identifying characteristics and organising them into dimensions and types; and subgroup analysis based on study quality, narrator involvement in analysis, diagnosis of psychosis and experience of trauma. The synthesis was informed by consultation with a Lived Experience Advisory Panel and an academic panel. The review protocol was pre-registered (Prospero CRD42018090188).Results8951 titles, 366 abstracts and 121 full-text articles published January 2000-July 2018 were screened, of which 45 studies analysing 629 recovery narratives were included. A conceptual framework of mental health recovery narratives was developed, comprising nine dimensions (Genre; Positioning; Emotional Tone; Relationship with Recovery; Trajectory; Use of Turning Points; Narrative Sequence; Protagonists; and Use of Metaphors), each containing between two and six types. Subgroup analysis indicated all dimensions were present across most subgroups, with Turning Points particularly evident in trauma-related studies.ConclusionsRecovery narratives are diverse and multidimensional. They may be non-linear and reject coherence. To a greater extent than illness narratives, they incorporate social, political and rights aspects. Approaches to supporting development of recovery narratives should expand rather than reduce available choices. Research into the narratives of more diverse populations is needed. The review supports trauma-informed approaches, and highlights the need to understand and support post-traumatic growth for people experiencing mental health issues.

Project description:ObjectivesPost-traumatic growth, defined as positive psychological change experienced as a result of the struggle with challenging life circumstances, is under-researched in people with mental health problems. The aim of this study was to develop a conceptual framework for post-traumatic growth in the context of recovery for people with psychosis and other severe mental health problems.DesignQualitative thematic analysis of cross-sectional semi-structured interviews about personal experiences of mental health recovery.SettingEngland.ParticipantsParticipants were adults aged over 18 and: (1) living with psychosis and not using mental health services (n=21); (2) using mental health services and from black and minority ethnic communities (n=21); (3) underserved, operationalised as lesbian, gay, bisexual and transgender community or complex needs or rural community (n=19); or (4) employed in peer roles using their lived experience with others (n=16). The 77 participants comprised 42 (55%) female and 44 (57%) white British.ResultsComponents of post-traumatic growth were present in 64 (83%) of recovery narratives. Six superordinate categories were identified, consistent with a view that post-traumatic growth involves learning about oneself (self-discovery) leading to a new sense of who one is (sense of self) and appreciation of life (life perspective). Observable positively valued changes comprise a greater focus on self-management (well-being) and more importance being attached to relationships (relationships) and spiritual or religious engagement (spirituality). Categories are non-ordered and individuals may start from any point in this process.ConclusionsPost-traumatic growth is often part of mental health recovery. Changes are compatible with research about growth following trauma, but with more emphasis on self-discovery, integration of illness-related experiences and active self-management of well-being. Trauma-related growth may be a preferable term for participants who identify as having experienced trauma. Trauma-informed mental healthcare could use the six identified categories as a basis for new approaches to supporting recovery.Trial registration numberISRCTN11152837.

Project description:BackgroundProblems with substance use are common in some Aboriginal communities. Although problems with substance use are associated with significant mortality and morbidity, many people who experience them do not seek help. Training in mental health first aid has been shown to be effective in increasing knowledge of symptoms and behaviours associated with seeking help. The current study aimed to develop culturally appropriate guidelines for providing mental health first aid to an Aboriginal or Torres Strait Islander person who is experiencing problem drinking or problem drug use (e.g. abuse or dependence).MethodsTwenty-eight Aboriginal health experts participated in two independent Delphi studies (n = 22 problem drinking study, n = 21 problem drug use; 15 participated in both). Panellists were presented with statements about possible first aid actions via online questionnaires and were encouraged to suggest additional actions not covered by the content. Statements were accepted for inclusion in the guidelines if they were endorsed by ? 90% of panellists as either 'Essential' or 'Important'. At the end of the two Delphi studies, participants were asked to give feedback on the value of the project and their participation experience.ResultsFrom a total of 735 statements presented over two studies, 429 were endorsed (223 problem drinking, 206 problem drug use). Statements were grouped into sections based on common themes (n = 7 problem drinking, n = 8 problem drug use), then written into guideline documents. Participants evaluated the Delphi method employed, and the guidelines developed, as useful and appropriate for Aboriginal and Torres Strait Islander people.ConclusionsAboriginal health experts were able to reach consensus about culturally appropriate first aid for problems with substance use. Many first aid actions endorsed in the current studies were not endorsed in previous international Delphi studies, conducted on problem drinking and problem drug use in non-Indigenous people, highlighting the need for culturally specific first aid strategies to be employed when assisting Aboriginal or Torres Strait Islander people.