Ashleigh Charles

Background: The rise of online mental health communities has reshaped the ways individuals seek and receive mental health support. Although online mental health communities (OMHCs) offer a valuable space for peer support, including through experience-sharing, they also present challenges, including moderation practices to cultivate supportive interactions and secure member safety. No comprehensive framework of moderation practices has been established. Developing such an understanding is important, as moderators play a central role in facilitating a sense of community and determining whether OMHCs function as safe and supportive spaces. Objective: This study aimed to develop typologies of moderator practices used to support safety and facilitate a sense of community within OMHCs for people with mental health problems, and the content of OMHC community guidelines. Methods: A systematized review of empirical research studies focusing on moderation practices and community guidelines in OMHCs was conducted using MEDLINE, Web of Science, Association for Computing Machinery Digital Library, supplemented with a purposive search to identify gray literature on community guidelines for OMHC moderation. Inclusion criteria: online, text-based component, asynchronous or synchronous moderation, mental health–related focus, and human moderation. Exclusion criteria: crisis-focused, audience-based, nonmoderated or bot-moderated, profession not peer support, non-English, and academic review or thesis. The search period was 2014 to 2024. A bespoke data extraction sheet was piloted, then populated, capturing document, OMHC, member, and moderator characteristics. Thematic analysis was used to synthesize the findings relating to each objective. Results: The systematized search identified 11,347 studies and other documents, from which 80 studies were included, comprising 48 empirical papers and 32 gray literature documents. These related to 52 different OMHCs. Four categories of moderator practices were identified: (1) premoderation and postmoderation processes, (2) reactive moderation processes, (3) building the community, and (4) monitoring members. Premoderation and postmoderation processes were used within 41 (79%) of the 52 OMHCs. Three categories of community guideline content were identified: (1) content of post, (2) member conduct, and (3) moderation. The category, content of post, was the most widely used component of community guidelines, used in 35 (67%) of the 52 OMHCs. Conclusions: The two typologies provide a foundational framework that can be adapted and applied to community guidelines and moderation strategies across a range of contexts. When operationalized, they could provide benefit to people with mental health problems by using them to guide the development of moderator training, digital tools, and governance policies that align with the specific characteristics and objectives of individual OMHCs. Effective translation and application of these typologies require careful, nuanced consideration of each community’s goals, membership, and cultural context to ensure their relevance, effectiveness, and impact.

Aims: While there is growing evidence for the effectiveness of peer support (PS) in improving psychosocial outcomes among individuals with severe mental health conditions, the mechanisms through which these effects occur remain insufficiently understood. This study examines whether social inclusion, hope and empowerment mediate the relationship between PS, personal recovery and health and social functioning. Methods: Data were collected from 565 adults with severe mental health conditions who participated in the multicentre UPSIDES randomised controlled trial across six sites in Germany, Uganda, Tanzania, India and Israel. Participants in the intervention group received structured PS from trained peer workers over a 6- to 8-month period. Standardised, self-report measures of social inclusion, hope, empowerment and personal recovery, as well as clinician-rated health and social functioning, were administered at baseline, 4 months, end of intervention (8 months) and 12-month follow-up. Cross-lagged panel modelling was used to explore longitudinal associations and mediating pathways. Results: The cross-lagged models showed strong autoregressive effects across all variables, indicating high temporal stability. There were no significant direct effects of PS on recovery or health and social functioning. However, mediation analysis identified significant indirect effects of PS on personal recovery via social inclusion ( β = 0.114, 95% confidence interval [CI] [0.049, 0.194], P < 0.05) and hope ( β = 0.037, 95% CI [0.001, 0.086], P < 0.05). Similar indirect effects were observed for health and social functioning (via social inclusion: β = −0.035, 95% CI [−0.064, −0.013]; via hope: β = −0.026, 95% CI [−0.052, −0.006]; both P < 0.05). Conclusions: Findings suggest that PS affects recovery-related outcomes primarily through intermediate mechanisms of enhanced hope and social inclusion. These results support theoretical models positing indirect pathways of change in PS interventions and highlight the value of targeting social and psychological domains when designing and implementing PS in mental health services. Individuals with lower baseline levels of hope and social inclusion may particularly benefit from PS. Trial Registration Number: ISRCTN26008944

Background: Personal narratives describing recovery from mental health problems are widely available to the public. We developed theory on the characteristics and impact of recovery narratives, developed curation procedures for the NEON Collection of 659 recovery narratives and developed and evaluated the NEON Intervention, a theory-informed web application providing access to the NEON Collection. Objectives: To evaluate the effectiveness and cost-effectiveness of the NEON Intervention as compared to usual care and whether this varies by prior health service usage. Design: Three pragmatic parallel-group randomised controlled trials of the NEON Intervention. Intervention arm participants received immediate access. Control arm participants received access after a 52-week follow-up. The effectiveness analysis was a linear regression model of outcome at 52 weeks. The cost-effectiveness analysis compared the incremental cost-effectiveness ratio to the £20,000–30,000 threshold defined in the National Institute for Health and Care Excellence reference case. All analyses were intention-to-treat and baseline-adjusted, with multiple imputation for missing data. Setting: England. Participants: All trials recruited people who were aged 18+ years, resident in England, capable of accessing or being supported to access the internet, able to understand written and spoken English and capable of providing online informed consent. NEON Trial participants also had experience of mental health-related distress in the last 6 months, and psychosis in the previous 5 years. NEON-O (i.e. non-psychosis) Trial participants also had experience of mental health-related distress in the last 6 months, but with no psychosis in the previous 5 years. People identifying as informal carers for people affected by mental health problems but not eligible for the NEON Trial or NEON-O Trial were recruited to the NEON-C feasibility trial. All inclusion criteria were self-rated. Recruitment was from March 2020 to March 2021, through public communications by the central study team, and the work of clinical support officers at 11 secondary care research sites. Interventions: The NEON Intervention has four narrative access mechanisms: theory-informed algorithmic recommendation, random selection, self-selection by narrative category and return to impactful narratives. Participants used the NEON Intervention as much as they wished. Main outcome measures: Primary outcome: quality of life (Manchester Short Assessment). Secondary outcomes: distress, hope, self-efficacy, meaning in life and health status. Results: For the NEON-O (i.e. non-psychosis) Trial, we found a significant baseline-adjusted difference of 0.13 (95% confidence interval 0.01 to 0.26, p = 0.041) in the Manchester Short Assessment score between intervention and control, and a significant baseline-adjusted difference of 0.22 (95% confidence interval 0.05 to 0.40, p = 0.014) in the presence subscale of the Meaning in Life Questionnaire. The incremental cost-effectiveness ratio was £12,526 per quality-adjusted life-year, lower than a threshold of £30,000 per quality-adjusted life-year used for health service commissioning in England. For participants who had used specialist mental health services at baseline, the intervention appeared to reduce cost, although confidence intervals were wide and results were not statistically significant (–£98, 95% credible interval –£606 to £309). It also improved quality-adjusted life-years (0.0165, 95% credible interval 0.0057 to 0.0273) per participant. Hence, for this subgroup of participants, it dominated usual care. For the NEON Trial, no significant baseline-adjusted differences in outcome were found. An incremental cost-effectiveness ratio of £110,501 was found for the NEON Intervention. A subgroup analysis provided preliminary evidence for greater cost-effectiveness for current mental health service users, with an incremental cost-effectiveness ratio of £35,013. The NEON-C Trial showed acceptability and feasibility for informal carers. It recommended integration of carer narratives and creation of an online carer community. Limitations: Participants were recruited during a period in which movement and social interaction were widely affected by the COVID-19 pandemic, with the potential to influence generalisability. For the NEON-O Trial, we had an unrepresentative proportion of female-gendered participants (79.3%). Therefore, our NEON-O Trial findings cannot be generalised. Conclusions: This research programme has shown promising findings from the testing of the NEON Intervention. There is further research to do before implementation can be suggested. Future work: The NEON Intervention should be evaluated through a randomised controlled trial with people experiencing psychosis and using mental health services. The NEON Intervention should be refined to suit the needs of carers and then evaluated through a randomised controlled trial. The NEON-O Trial should be repeated with narrower mental health populations (e.g. mood disorders, eating disorders) to refine knowledge on effectiveness and cost-effectiveness. This may include refining the narrative collection used with these populations. If the NEON Intervention is implemented on a larger scale for people with non-psychosis mental health problems, then studies should be conducted to monitor benefits, continuously assess safety and documentation implementation processes. Future studies should consider alternative forms for presenting recovery narratives, including through multilanguage or multiculture support, and addressing digital exclusion by providing access through widely available technologies, such as smartphones and text messaging. Longitudinal designs are needed to document the short-term, medium-term and long-term impacts of recovery narratives. Trial registration: This trial is registered as NEON Trial ISRCTN11152837, NEON-O Trial ISRCTN63197153 and NEON-C Trial ISRCTN76355273. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref.: RP-PG-0615-20016) and is published in full in Programme Grants for Applied Research; Vol. 13, No. 9. See the NIHR Funding and Awards website for further award information.

Aims: The aim of the article is to undertake the first economic analysis exploring the costs of illness (COIs) and factors affecting COIs in people living with mental disorders using individual patient-level data across five countries with different national income levels. This is done by investigating diagnosis-related and sociodemographic factors for country-specific medical and psychosocial service use in these high, lower-middle and low-income countries. Methods: Using data from the Using Peer Support In Developing Empowering Mental Health Services (UPSIDES) study, a pragmatic randomized controlled trial, costs for medical and psychosocial services have been estimated over 6 months in 615 people with severe mental illness from Germany (n = 171), Uganda (n = 138), Tanzania (n = 110), India (n = 93) and Israel (n = 103). The primary economic analysis included (1) total COI expressed in 2021 international dollars and (2) proportional cost-type expenditures. Generalized linear regression models were also used to estimate the impact of psychiatric diagnosis, social disability, age and gender on the total COI. Results: Of the 615 participants (mean [SD] age 38.3 [11.2] years; 335 [54.5%] women), the total 6-month COI ranged from $311.48 [±547.47] in Tanzania to $10,493.19 [±13324.10] in Germany. High-income Germany and low-income Uganda both concentrated >70% of COIs on inpatient care. High-income Israel had the most balanced COI, with the lowest mean share (15.40%) on inpatient care, compared with community (35.12%) and primary care (33.01%). Female gender was associated with lower COI (e^b = 0.215; p = 0.000) in Tanzania, while in India diagnosis of depression was associated with lower costs than schizophrenia (e^b = 0.363; p = 0.017). Health of the Nation Outcome Scale scores (social disability) were not significantly associated with COIs in any country. In Tanzania, the total mean COI increased by 3.6% for every additional year of age. Compared to Germany, mean COIs were significantly lower by 90%, 99% and 86% in Uganda, Tanzania and India, respectively, and by 50% in Israel, although this difference was not significant. Conclusions: National income is correlated with the total COI in people living with mental disorders but is a poor predictor of the sector-specific distribution of these expenditures.

Background: Some trials have evaluated peer support for people with mental ill health in high-income, mainly English-speaking countries, but the quality of the evidence is weak. Aims: To investigate the effectiveness of UPSIDES peer support in high-, middle- and low-income countries. Method: This pragmatic multicentre parallel-group wait-list randomised controlled trial (registration: ISRCTN26008944) with three measurement points (baseline and 4 and 8 months) took place at six study sites: two in Germany, and one each in Uganda, Tanzania, Israel and India. Participants were adults with long-standing severe mental health conditions. Outcomes were improvements in social inclusion (primary) and empowerment, hope, recovery, health and social functioning (secondary). Participants allocated to the intervention group were offered UPSIDES peer support. Results: Of the 615 participants (305 intervention group), 337 (54.8%) identified as women. The average age was 38.3 (s.d. = 11.2) years, and the mean illness duration was 14.9 (s.d. = 38.4) years. Those allocated to the intervention group received 6.9 (s.d. = 4.2) peer support sessions on average. Intention-to-treat analysis showed effects on two of the three subscales of the Social Inclusion Scale, Empowerment Scale and HOPE Scale. Per-protocol analysis with participants who had received three or more intervention sessions also showed an effect on the Social Inclusion Scale total score ( β = 0.18, P = 0.031, 95% CI: 0.02–0.34). Conclusions: Peer support has beneficial impacts on social inclusion, empowerment and hope among people with severe mental health conditions across diverse settings. As social isolation is a key driver of mental ill health, and empowerment and hope are both crucial for recovery, peer support can be recommended as an effective component of mental healthcare. Peer support has the potential to move global mental health closer towards a recovery- and rights-based orientation.

Objective The introduction of peer support in mental health teams creates opportunities and challenges for both peer and non-peer staff. However, the majority of research on mental health workers’ (MHWs) experiences with peer support comes from high-income countries. Using Peer Support In Developing Empowering Mental Health Services (UPSIDES) is an international multicentre study, which aims at scaling up peer support for people with severe mental illness in Europe, Asia and Africa. This study investigates MHWs experiences with UPSIDES peer support. Design Six focus groups with MHWs were conducted approximately 18 months after the implementation of the UPSIDES peer support intervention. Transcripts were analysed with a descriptive approach using thematic content analysis. Setting Qualitative data were collected in Ulm and Hamburg (Germany), Butabika (Uganda), Dar es Salaam (Tanzania), Be’er Sheva (Israel) and Pune (India). Participants 25 MHWs (19 females and 6 males) from UPSIDES study sites in the UPSIDES Trial (ISRCTN26008944) participated. Findings Five overarching themes were identified in MHWs’ discussions: MHWs valued peer support workers (PSWs) for sharing their lived experiences with service users (theme 1), gained trust in peer support over time (theme 2) and provided support to them (theme 3). Participants from lower-resource study sites reported additional benefits, including reduced workload. PSWs extending their roles beyond what MHWs perceived as appropriate was described as a challenge (theme 4). Perceptions about PSWs varied based on previous peer support experience, ranging from considering PSWs as equal team members to viewing them as service users (theme 5). Conclusions Considering local context is essential in order to understand MHWs’ views on the cooperation with PSWs. Especially in settings with less prior experience of peer support, implementers should make extra effort to promote interaction between MHWs and PSWs. In order to better understand the determinants of successful implementation of peer support in diverse settings, further research should investigate the impact of contextual factors (eg, resource availability and cultural values). Trial registration number ISRCTN26008944.

Objectives Despite the established evidence base for mental health peer support work, widespread implementation remains a challenge. This study aimed to explore societal and organisational influences on the implementation of peer support work in low-income and high-income settings. Design Study sites conducted two focus groups in local languages at each site, using a topic guide based on a conceptual framework describing eight peer support worker (PSW) principles and five implementation issues. Transcripts were translated into English and an inductive thematic analysis was conducted to characterise implementation influences. Setting The study took place in two tertiary and three secondary mental healthcare sites as part of the Using Peer Support in Developing Empowering Mental Health Services (UPSIDES) study, comprising three high-income sites (Hamburg and Ulm, Germany; Be’er Sheva, Israel) and two low-income sites (Dar es Salaam, Tanzania; Kampala, Uganda) chosen for diversity both in region and in experience of peer support work. Participants 12 focus groups were conducted (including a total of 86 participants), across sites in Ulm (n=2), Hamburg (n=2), Dar es Salaam (n=2), Be’er Sheva (n=2) and Kampala (n=4). Three individual interviews were also done in Kampala. All participants met the inclusion criteria: aged over 18 years; actual or potential PSW or mental health clinician or hospital/community manager or regional/national policy-maker; and able to give informed consent. Results Six themes relating to implementation influences were identified: community and staff attitudes, resource availability, organisational culture, role definition, training and support and peer support network. Conclusions This is the first multicountry study to explore societal attitudes and organisational culture influences on the implementation of peer support. Addressing community-level discrimination and developing a recovery orientation in mental health systems can contribute to effective implementation of peer support work. The relationship between societal stigma about mental health and resource allocation decisions warrants future investigation. Trial registration number ISRCTN26008944.

The employment of mental health peer support (PS) is recommended in national and international mental health policy, and widely implemented across many countries. The key components of PS remain to be identified. This study aimed to develop a typology of components involved in one-to-one PS for adults in mental health services. A systematised review was performed to establish a preliminary long list of candidate components, followed by expert consultation (n = 21) to refine the list. Forty-two publications were full-text reviewed, comprising 26 trial reports, nine training manuals, and seven change model papers. Two hundred forty-two candidate components were identified, which were thematically synthesised to 16 components and eight sub-components, categorised into four themes: recruitment, preparation, practice, and PS worker wellbeing. Our typology can inform reflection and planning of PS practice, and allow more rigorous and synthesised studies, such as component network meta-analyses, to characterise the impact of each component and their interactions.

Mental health peer support (PS) is a relational approach to recovery. Service users are helped through a relationship focused on connection with a PS worker who shares similar experiences. Despite the strong evidence base, the mechanisms of action for mental health PS are under-researched. Several theories have been proposed to explain the mechanisms, including social comparison theory (SCT). SCT highlights the benefits arising from emphasising differences between a service user and the PS worker. An unintended consequence is that connection between them may be reduced. We propose common humanity (CH) as an under-acknowledged mechanism of action. CH is an experience recognising that there are other people living with similar suffering, and helps us regulate emotions. A CH-informed connection-based PS relationship may help a service user in different ways from a SCT-informed comparison-based PS relationship. Future PS research can investigate emotional self-regulation to establish whether CH-related outcomes arise from PS.