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BackgroundThe internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focus of 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). ObjectiveThis study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. MethodsKnowledge 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 for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary 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 were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. ResultsKI1 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 and internalization 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 that participant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did not predict 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. ConclusionsRRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. 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.

BackgroundInitial training is essential for the mental health peer support worker (PSW) role. Training needs to incorporate recent advances in digital peer support and the increase of peer support work roles internationally. There is a lack of evidence on training topics that are important for initial peer support work training and on which training topics can be provided on the internet. ObjectiveThe objective of this study is to establish consensus levels about the content of initial training for mental health PSWs and the extent to which each identified topic can be delivered over the internet. MethodsA systematized review was conducted to identify a preliminary list of training topics from existing training manuals. Three rounds of Delphi consultation were then conducted to establish the importance and web-based deliverability of each topic. In round 1, participants were asked to rate the training topics for importance, and the topic list was refined. In rounds 2 and 3, participants were asked to rate each topic for importance and the extent to which they could be delivered over the internet. ResultsThe systematized review identified 32 training manuals from 14 countries: Argentina, Australia, Brazil, Canada, Chile, Germany, Ireland, the Netherlands, Norway, Scotland, Sweden, Uganda, the United Kingdom, and the United States. These were synthesized to develop a preliminary list of 18 topics. The Delphi consultation involved 110 participants (49 PSWs, 36 managers, and 25 researchers) from 21 countries (14 high-income, 5 middle-income, and 2 low-income countries). After the Delphi consultation (round 1: n=110; round 2: n=89; and round 3: n=82), 20 training topics (18 universal and 2 context-specific) were identified. There was a strong consensus about the importance of five topics: lived experience as an asset, ethics, PSW well-being, and PSW role focus on recovery and communication, with a moderate consensus for all other topics apart from the knowledge of mental health. There was no clear pattern of differences among PSW, manager, and researcher ratings of importance or between responses from participants in countries with different resource levels. All training topics were identified with a strong consensus as being deliverable through blended web-based and face-to-face training (rating 1) or fully deliverable on the internet with moderation (rating 2), with none identified as only deliverable through face-to-face teaching (rating 0) or deliverable fully on the web as a stand-alone course without moderation (rating 3). ConclusionsThe 20 training topics identified can be recommended for inclusion in the curriculum of initial training programs for PSWs. Further research on web-based delivery of initial training is needed to understand the role of web-based moderation and whether web-based training better prepares recipients to deliver web-based peer support.

BackgroundCollections of lived experience narratives are increasingly used in health research and medical practice. However, there is limited research with respect to the decision-making processes involved in curating narrative collections and the work that curators do as they build and publish collections. ObjectiveThis study aims to develop a typology of curatorial decisions involved in curating narrative collections presenting lived experiences of mental health service use, recovery, or madness and to document approaches selected by curators in relation to identified curatorial decisions. MethodsA preliminary typology was developed by synthesizing the results of a systematic review with insights gained through an iterative consultation with an experienced curator of multiple recovery narrative collections. The preliminary typology informed the topic guide for semistructured interviews with a maximum variation sample of 30 curators from 7 different countries. All participants had the experience of curating narrative collections of the lived experiences of mental health service use, recovery, or madness. A multidisciplinary team conducted thematic analysis through constant comparison. ResultsThe final typology identified 6 themes, collectively referred to as VOICES, which stands for values and motivations, organization, inclusion and exclusion, control and collaboration, ethics and legal, and safety and well-being. A total of 26 subthemes related to curation decisions were identified. ConclusionsThe VOICES typology identifies the key decisions to consider when curating narrative collections about the lived experiences of mental health service use, recovery, or madness. It might be used as a theoretical basis for a good practice resource to support curators in their efforts to balance the challenges and sometimes conflicting imperatives involved in collecting, organizing, and sharing narratives. Future research might seek to document the use of such a tool by curators and hence examine how best to use VOICES to support decision making.

Peer support is a collaborative practice where people with lived experience of mental health conditions engage in supporting like‐minded. Peer support impacts on personal recovery and empowerment and creates value at an organisational level. However, the implementation of peer support into existing mental health services is often impeded by barriers embedded in organisational culture and support in role expectations. Non‐peer professionals' recovery orientation and attitudes towards peer support workers (PSWs) are essential factors in the implementation of peer support, and this study explored non‐peer professionals' understanding of recovery and their attitudes towards PSWs joining existing community mental health teams in one region of Denmark. In total, 17 non‐peer professionals participated in three focus groups. Thematic analysis led to three themes: (1) Recovery is a process of "getting better" and balancing personal and clinical perspectives; (2) Realising recovery‐oriented practice: a challenging task with conflicting values; and (3) Expectations and concerns about peer support workers joining the team. Recovery‐oriented practice faces challenging conditions in contemporary mental health services due to a dominant focus on biomedical aspects in care and treatment. Implementation facilitators and barriers in the employment of PSWs point towards fundamental aspects that must be present when employing PSWs in an organisation. The issues described leading up to the employment of PSWs reflected in this study underpin the importance of preparing an organisation for the employment of PSWs based on the available knowledge. [ABSTRACT FROM AUTHOR]

This qualitative study explored the perspectives of Flexible Assertive Community Treatment managers on preparation and employment of peer support workers. The study was based on semi-structured interviews with managers (n = 5) in Outpatient Services in the North Denmark Region. The analysis was based on an inductive approach to content analysis which led to three themes: (1) An exploratory but energy-loaded process—deciding to employ peer support workers, (2) Paving the road while walking—preparing employment of peer support workers, and (3) Uncertainty about the "how" and the "what"—preparing mental health professionals for collaborating with peer support workers. Together these themes describe an exploratory and unstructured implementation process, revealing a lack of structure during implementation. Such circumstances are known to potentially compromise staff wellbeing, feeling insecure about own professional role, and lack of readiness to embrace peer support workers as colleagues. Applying an implementation framework and addressing the literature on barriers and facilitators may promote successful implementation of peer support worker employment. [ABSTRACT FROM AUTHOR]

Background: More knowledge about positive outcomes for people with first-episode psychosis (FEP) is needed. An FEP 10-year follow-up study investigated the rate of personal recovery, emotional wellbeing, and clinical recovery in the total sample and between psychotic bipolar spectrum disorders (BD) and schizophrenia spectrum disorders (SZ); and how these positive outcomes overlap. Methods: FEP participants (n = 128) were re-assessed with structured clinical interviews at 10-year follow-up. Personal recovery was self-rated with the Questionnaire about the Process of Recovery-15-item scale (total score ⩾45). Emotional wellbeing was self-rated with the Life Satisfaction Scale (score ⩾5) and the Temporal Experience of Pleasure Scale (total score ⩾72). Clinical recovery was clinician-rated symptom-remission and adequate functioning (duration minimum 1 year). Results: In FEP, rates of personal recovery (50.8%), life satisfaction (60.9%), and pleasure (57.5%) were higher than clinical recovery (33.6%). Despite lower rates of clinical recovery in SZ compared to BD, they had equal rates of personal recovery and emotional wellbeing. Personal recovery overlapped more with emotional wellbeing than with clinical recovery (χ2). Each participant was assigned to one of eight possible outcome groups depending on the combination of positive outcomes fulfilled. The eight groups collapsed into three equal-sized main outcome groups: 33.6% clinical recovery with personal recovery and/or emotional wellbeing; 34.4% personal recovery and/or emotional wellbeing only; and 32.0% none. Conclusions: In FEP, 68% had minimum one positive outcome after 10 years, suggesting a good life with psychosis. This knowledge must be shared to instill hope and underlines that subjective and objective positive outcomes must be assessed and targeted in treatment. [ABSTRACT FROM AUTHOR]

Introduction: Mental health services have transitioned from treating symptoms to emphasizing personal recovery. Despite its importance, integrating personal recovery into clinical practice remains work in progress. This study evaluates the psychometric qualities of the Brief INSPIRE-O, a five-item patient-reported outcome measure assessing personal recovery. Method: The study collected data from 2018 to 2020 at the Mental Health Services, Capital Region of Denmark, using an internet-based system examining 8,192 non-psychotic patients – receiving outpatient treatment. Materials: This study evaluated the Brief INSPIRE-O and used measures of symptomatology (SCL-10), well-being (WHO-5), and social functioning (modified SDS). Results: The study population comprised 76.8% females with a mean age of 32.9 years, and diagnoses included anxiety (28%), depression (34%), and personality disorder (19%). The mean Brief INSPIRE-O score (39.9) was lower than the general population norm (71.1). The Brief INSPIRE-O showed acceptable test–retest reliability (0.75), scalability (0.39), and internal consistency (0.73). Correlations with other mental health criteria were in the expected direction for symptomatology (−0.46), well-being (0.60), and social functioning (−0.43) and remained consistent across diagnoses. Discussion: The Brief INSPIRE-O demonstrated strong psychometric qualities and could be recommended as a measure of personal recovery for use in both research and clinical practice. Its strong theoretical basis and short completion time make it suitable for use for research. Incorporating Brief INSPIRE-O into clinical assessment will further support the process of mental health systems re-orientating towards personal recovery. [ABSTRACT FROM AUTHOR]

Introduction: Mental health recovery narratives are widely available to the public, and can benefit people affected by mental health problems. The NEON Intervention is a novel web-based digital health intervention providing access to the NEON Collection of recovery narratives. The NEON Intervention was found to be effective and cost-effective in the NEON-O Trial for people with nonpsychosis mental health problems (ISRCTN63197153), and has also been evaluated in the NEON Trial for people with psychosis experience (ISRCTN11152837). We aimed to document NEON Intervention experiences, through an integrated process evaluation. Methods: Analysis of interviews with a purposive sample of intervention arm participants who had completed trial participation. Results: We interviewed 34 NEON Trial and 20 NEON-O Trial participants (mean age 40.4 years). Some users accessed narratives through the NEON Intervention almost daily, whilst others used it infrequently or not at all. Motivations for trial participation included: exploring the NEON Intervention as an alternative or addition to existing mental health provision; searching for answers about mental health experiences; developing their practice as a mental health professional (for a subset who were mental health professionals); claiming payment vouchers. High users (10 + narrative accesses) described three forms of appropriation: distracting from difficult mental health experiences; providing an emotional boost; sustaining a sense of having a social support network. Most participants valued the scale of the NEON Collection (n = 659 narratives), but some found it overwhelming. Many felt they could describe the characteristics of a desired narrative that would benefit their mental health. Finding a narrative meeting their desires enhanced engagement, but not finding one reduced engagement. Narratives in the NEON Collection were perceived as authentic if they acknowledged the difficult reality of mental health experiences, appeared to describe real world experiences, and described mental health experiences similar to those of the participant. Discussion: We present recommendations for digital health interventions incorporating collections of digital narratives: (1) make the scale and diversity of the collection visible; (2) provide delivery mechanisms that afford appropriation; (3) enable contributors to produce authentic narratives; (4) enable learning by healthcare professionals; (5) consider use to address loneliness. [ABSTRACT FROM AUTHOR]

Background: Peer support in mental health is a low-threshold intervention with increasing evidence for enhancing personal recovery and empowerment of persons living with severe mental health conditions. As peer support spreads globally, there is a growing need for peer support training programmes that work well in different contexts and cultures. This study evaluates the applicability and transferability of implementing a manualised multi-national training programme for mental health peer support workers called UPSIDES from the perspective of different local stakeholders in high-, middle-, and low-income countries. Method: Data from seven focus groups across six study sites in Africa (Tanzania, Uganda), Asia (India, Israel), and Europe (Germany 2 sites) with 44 participants (3 service users, 7 peer support workers, 25 mental health staff members, 6 clinical directors and 3 local community stakeholders) were thematically analysed. Results: 397 codes were identified, which were thematically analysed. Five implementation enablers were identified: (i) Enhancing applicability through better guidance and clarity of training programme management, (ii) provision of sufficient time for training, (iii) addressing negative attitudes towards peer support workers by additional training of organisations and staff, (iv) inclusion of core components in the training manual such as communication skills, and (v) addressing cultural differences of society, mental health services and discrimination of mental health conditions. Discussion: Participants in all focus groups discussed the implementation of the training and peer support intervention to a greater extent than the content of the training. This is in line with growing literature of difficulties in the implementation of peer support including difficulties in hiring peer support workers, lack of funding, and lack of role clarity. The results of this qualitative study with stakeholders from different mental health settings worldwide emphasises the need to further investigate the successful implementation of peer support training. All results have been incorporated into the manualisation of the UPSIDES peer support training. [ABSTRACT FROM AUTHOR]

Introduction: Informal carers of people with mental health problems often have unmet support needs. Mental health recovery narratives are increasingly accessible, but their relevance to and effect on informal carers have been minimally investigated. The Narrative Experiences Online (NEON) Intervention is a first-in-field intervention that provides informal carers with access to a diverse collection of recorded mental health recovery narratives. This trial aimed to examine the feasibility and acceptability of the NEON Intervention for informal carers. Methods: This study involved a two-arm feasibility randomized controlled trial. Carers were randomly assigned to receiving versus not receiving the NEON Intervention. The feasibility aspects investigated included the acceptability of the intervention and of randomization, trial processes, engagement rates, recruitment procedures, attrition, sample size estimation, identification of candidate primary and secondary outcomes, and the feasibility of conducting a definitive trial. A qualitative process evaluation was conducted. Findings: A total of 121 carers were eligible, of whom 54 were randomized (intervention: 27, control: 27). Twelve-month follow-up data were available for 36 carers. Carers accessed a mean of 25 narratives over a 12-month period, and the intervention group, compared with the control group, reported a small effect on hope and a moderate effect on the presence of meaning in life. Five modifications were recommended to improve the user experience, applicability, and trial processes. Discussion: The NEON Intervention is feasible and acceptable. Significant refinement of the NEON Intervention and trial processes is required to personalize and ensure applicability to carers. Further feasibility testing is recommended prior to a definitive trial. [ABSTRACT FROM AUTHOR]

Objective: Methods for characterizing mental health recovery narratives are needed to enable the selection of helpful narratives which can support the recovery processes of other people. The Inventory of Characteristics of Recovery Stories (INCRESE) is an existing English-language tool to characterize recovery narratives, which is not available in Dutch. The aims of this study were to create a Dutch translation of INCRESE and to evaluate the feasibility of sustained and routine use, as well as its validity and reliability. Research design and methods: INCRESE was translated into Dutch (INCRESE-NL) using an established translation methodology. Six coders with different professional backgrounds rated 30 purposively selected Dutch narratives using INCRESE-NL and then completed an evaluation survey. Feasibility was assessed qualitatively and content validity both qualitatively and quantitatively. Gwet's AC1 agreement coefficient was used to calculate intercoder reliability. Results: Coders evaluated INCRESE-NL as a suitable instrument to capture important characteristics of recovery narratives with an acceptable administrative burden. The content validity index was sufficient for 5/7 sections of INCRESE-NL. Most items were found to be clear and suitable for capturing the corresponding characteristic, although some missed strict coding rules or clear descriptions, especially in section 4 on narrative characteristics. Gwet's AC1 could be calculated for 67/77 items, of which 62 scored sufficient and five scored below threshold. Gwet's AC1 coefficients corresponded well with the original INCRESE Fleiss Kappa values. Conclusions: INCRESE-NL has sufficient feasibility, validity, and reliability and can be used to characterize Dutch recovery narratives. [ABSTRACT FROM AUTHOR]

Objectives Mental health staff play an important role in facilitating personal recovery. We examined how mental health staff perceived personal recovery and the professional and personal benefits of their experience with supporting the personal recovery of service users. Research Design and Methods Forty-eight mental health staff wrote a narrative about a service user with severe mental illness that they believed to be in the process of personal recovery and elaborated on the impact of this professional experience. Interpretive phenomenological analysis was used to illuminate 1) staff conceptualizations of personal recovery, 2) professional contribution to recovery, and 3) positive impact of recovery-oriented care on staff. Results Staff conceptualizations of recovery focused on social connections and positive subjective states, as well as symptom remission and illness management. Professional contributions were narrated as encompassing treatment, relationships, and conversations as well as time and team collaboration. Impact on the staff included strong positive emotions, professional gains with respect to learning and self-esteem, motivation for and meaning in work, as well as belief in recovery. [ABSTRACT FROM AUTHOR]

Background: Healthcare services regularly receive patient feedback, most of which is positive. Empirical studies suggest that health services can use positive feedback to create patient benefit. Our aim was to map all available empirical evidence for how positive patient feedback creates change in healthcare settings. Methods: Empirical studies in English were systematically identified through database searches (ACM Digital Library, AMED, ASSIA, CINAHL, MEDLINE and PsycINFO), forwards and backwards citation, and expert consultation. We summarise the characteristics of included studies and the feedback they consider, present a thematic synthesis of qualitative findings, and provide narrative summaries of quantitative findings. Results: 68 papers were included, describing research conducted across six continents, with qualitative (n = 51), quantitative (n = 10), and mixed (n = 7) methods. Only two studies were interventional. The most common settings were hospitals (n = 27) and community healthcare (n = 19). The most common recipients were nurses (n = 29). Most outcomes described were desirable. These were categorised as (a) short-term emotional change for healthcare workers (including feeling motivated and improved psychological wellbeing); (b) work-home interactional change for healthcare workers (such as improved home-life relationships); (c) work-related change for healthcare workers (such as improved performance and staff retention). Some undesirable outcomes were described, including envy when not receiving positive feedback. The impact of feedback may be moderated by characteristics of particular healthcare roles, such as night shift workers having less interaction time with patients. Some factors moderating the change created by feedback are modifiable. Conclusion: Further interventional research is required to assess the effectiveness and cost-effectiveness of receiving positive feedback in creating specific forms of change such as increases in staff retention. Healthcare managers may wish to use positive feedback more regularly, and to address barriers to staff receiving feedback. [ABSTRACT FROM AUTHOR]

Partnering with people most affected by mental health problems can transform mental health outcomes. Citizen science as a research approach enables partnering with the public at a substantial scale, but there is scarce guidance on its use in mental health research. To develop best practise guidelines for conducting and reporting research, we conducted a systematic review of studies reporting mental health citizen science research. Documents were identified from electronic databases (n = 10), grey literature, conference proceedings, hand searching of specific journals and citation tracking. Document content was organised in NVIVO using the ten European Citizen Science Association (ECSA) citizen science principles. Best practise guidelines were developed by (a) identifying approaches specific to mental health research or where citizen science and mental health practises differ, (b) identifying relevant published reporting guidelines and methodologies already used in mental health research, and (c) identifying specific elements to include in reporting studies. A total of 14,063 documents were screened. Nine studies were included, from Australia, Belgium, Canada, Denmark, Netherlands, Spain, the UK, and the United States. Citizen scientists with lived experience of mental health problems were involved in data collection, analysis, project design, leadership, and dissemination of results. Most studies reported against some ECSA principles but reporting against these principles was often unclear and unstated. Best practise guidelines were developed, which identified mental health-specific issues relevant to citizen science, and reporting recommendations. These included citizen science as a mechanism for empowering people affected by mental health problems, attending to safeguarding issues such as health-related advice being shared between contributors, the use of existing health research reporting guidelines, evaluating the benefits for contributors and impact on researchers, explicit reporting of participation at each research stage, naming the citizen science platform and data repository, and clear reporting of consent processes, data ownership, and data sharing arrangements. We conclude that citizen science is feasible in mental health and can be complementary to other participatory approaches. It can contribute to active involvement, engagement, and knowledge production with the public. The proposed guidelines will support the quality of citizen science reporting. [ABSTRACT FROM AUTHOR]