Measuring fidelity to manualised peer support for people with severe mental health conditions: development and psychometric evaluation of the UPSIDES fidelity scale.

BACKGROUND: Peer support workers provide support for people experiencing mental health conditions based on their own lived experience of mental health problems. Assessing fidelity to core ingredients of peer support is vital for successful implementation and intervention delivery. Modifications to its implementation are needed when scaling up to different socio-economic settings, raising further uncertainty about fidelity. As part of a large multi-centre study on peer support called Using Peer Support In Developing Empowering Mental Health Services (UPSIDES), we developed and evaluated the psychometric properties of the UPSIDES Fidelity Scale. METHODS: We constructed the fidelity scale based on an initial item pool developed through international expert consultation and iterative feedback. Scale refinement involved site-level expert consultation and translation, resulting in a service user-rated 28-item version and a peer support worker-rated 21-item version assessing receipt, engagement, enactment, competence, communication and peer support-specific components. Both versions are available in six languages: English, German, Luganda, Kiswahili, Hebrew and Gujarati. The scale was then evaluated at six study sites across five countries, with peer support workers and their clients completing their respective ratings four and eight months after initial peer support worker contact. Psychometric evaluation included analysis of internal consistency, construct validity and criterion validity. RESULTS: For the 315 participants, item statistics showed a skewed distribution of fidelity values but no restriction of range. Internal consistency was adequate (range α = 0.675 to 0.969) for total scores and all subscales in both versions. Confirmatory factor analysis indicated acceptable fit of the proposed factor structure for the service user version (χ2/df = 2.746; RMSEA = 0.084) and moderate fit for the peer support worker version (χ2/df = 3.087; RMSEA = 0.093). Both versions showed significant correlations with external criteria: number of peer support sessions; perceived recovery orientation of the intervention; and severity of illness. CONCLUSIONS: The scale demonstrates good reliability, construct and criterion validity, making it a pragmatic and psychometrically acceptable measure for assessing fidelity to a manualised peer support worker intervention. Recommendations for use, along with research and practical implications, are addressed. As validated, multi-lingual tool that adapts to diverse settings this scale is uniquely positioned for global application. TRIAL REGISTRATION: ISRCTN, ISRCTN26008944. Registered on 30 October 2019.

Perspectives and Experiences of Stakeholders on Self-Disclosure of Peers in Mental Health Services.

With the movement towards recovery-oriented mental health (MH) services, individuals with MH lived-experience are increasingly employed as peer providers (peers). Peers are unique in that they bring knowledge from experience and eye-level connection to service users that enhance the quality of services and humanize MH systems' culture. In Israel, hundreds of peers are employed in various roles and settings across the MH system. However, peer integration into MH services faces challenges. One issue involves the use of self-disclosure (SD) in MH services which varies with explicitness across roles and settings. This study sought to understand perspectives and experiences regarding peers' SD (use & sharing of knowledge from experience) among different stakeholders in MH health services. Six focus groups and 4 semi-structured interviews (N = 42) were conducted as a part of a larger international project (UPSIDES; ERC Horizon 2020, Moran et al., Trials 21:371, 2020). Data was transcribed verbatim and analyzed using thematic analysis. Four categories and 7 themes were identified regarding current perspectives and experiences with peers' SD in MH organizations: (i) Restrained or cautious organizational approach to SD; (ii) Attitudes of peers to SD approach; (iii) The influence of designated peer roles on SD; and (iv) Unwarranted SD of peers working in traditional roles. The findings reveal that peers' SD in MH services is a complex process. Organizational approaches were often controlling of non-designated peers' SD practices; participants had diverse attitudes for and against peers' SD; SD occurred according to personal preferences, specific peer role and the director's approach to peers' SD; Conflictual SD dilemmas emerged in relation to service users and staff. SD sometimes occurs unwarrantely due to ill mental health. The presence of peer-designated roles positively impacts peers' SD. We interpret the current mix of views and general conduct of peer SD practice in statutory MH services as related to three aspects: 1. The presence of a traditional therapeutic SD model vs. a peer SD model - with the former currently being dominant. 2. Insufficient proficiency and skill development in peers' SD. 3. Stigmatic notions about peer SD among service users and staff. Together, these aspects interrelate and sometimes create a negative cycle create tension and confusion.A need to develop professionalism of peer SD in statutory services is highlighted alongside enhancing staff and service user acknowledgement of the value of peer SD. Developing peer-designated roles can positively impacts peer SD in MH statutory services. Training, support, and organizational interventions are required to further support for peer-oriented SD and the enhancement of a person-centered and recovery orientation of MH services.

UPSIDES Mental Health Peer Support in Face of the COVID-19 Pandemic: Actions and Insights.

The outburst of the COVID-19 pandemic challenged vulnerable populations such as individuals with significant mental illness. In this fresh focus, we describe the innovative development of the UPSIDES mental health peer support intervention, in face of the COVID-19 pandemic in Israel. While the research program is still ongoing, in this paper we focus on the processes and lessons learned from dealing with the rapidly changing circumstances of the pandemic. We portray additional activities conducted above and beyond the UPSIDES protocol in order to maintain continuation and prevent dropout. We learned that an essential combination of keeping a close adherence with the core peer principles and UPSIDES' systematic program and the use of flexible telecommunication means, helped to maintain social connection and service users' participation throughout these times. The sudden pandemic challenges appeared to level out power imbalances and accelerated the formation of reciprocal and supportive relational interactions within the intervention. These processes highlight experiential knowledge as a unique asset, and peer support services as useful in supporting individuals with significant mental illness throughout COVID-19.

Societal and organisational influences on implementation of mental health peer support work in low-income and high-income settings: a qualitative focus group study.

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.

Proportionate translation of study materials and measures in a multinational global health trial: methodology development and implementation.

OBJECTIVES: Current translation guidelines do not include sufficiently flexible translation approaches for different study materials. We aimed to develop a proportionate methodology to inform translation of all types of study materials in global health trials. DESIGN: The design included three stages: (1) categorisation of study materials, (2) integration of existing translation frameworks and (3) methodology implementation (Germany, India, Israel, Tanzania and Uganda) and refinement. PARTICIPANTS: The study population comprised 27 mental health service users and 27 mental health workers who were fluent in the local language in stage 7 (pretesting), and 54 bilingual mental health service users, aged 18 years or over, and able to give consent as judged by a clinician for step 9 (psychometric evaluation). SETTING: The study took place in preparation for the Using Peer Support in Developing Empowering Mental Health Services (UPSIDES) randomised controlled trial (ISRCTN26008944). PRIMARY OUTCOME MEASURE: The primary outcome measure was the Social Inclusion Scale (SIS). RESULTS: The typology identifies four categories of study materials: local text, study-generated text, secondary measures and primary measure. The UPSIDES Proportionate Translation Methodology comprises ten steps: preparation, forward translation, reconciliation, back translation, review, harmonisation, pretesting, finalisation, psychometric evaluation and dissemination. The translated primary outcome measure for the UPSIDES Trial (SIS) demonstrated adequate content validity (49.3 vs 48.5, p=0.08), convergent validity and internal consistency (0.73), with minimal floor/ceiling effects. CONCLUSION: This methodology can be recommended for translating, cross-culturally adapting and validating all study materials, including standardised measures, in future multisite global trials. The methodology is particularly applicable to multi-national studies involving sites with differing resource levels. The robustness of the psychometric findings is limited by the sample sizes for each site. However, making this limitation explicit is preferable to the typical practice of not reporting adequate details about measure translation and validation. TRAIL REGISTRATION NUMBER: ISRCTN26008944.

Peer support for people with severe mental illness versus usual care in high-, middle- and low-income countries: study protocol for a pragmatic, multicentre, randomised controlled trial (UPSIDES-RCT).

BACKGROUND: Peer support is an established intervention involving a person recovering from mental illness supporting others with mental illness. Peer support is an under-used resource in global mental health. Building upon comprehensive formative research, this study will rigorously evaluate the impact of peer support at multiple levels, including service user outcomes (psychosocial and clinical), peer support worker outcomes (work role and empowerment), service outcomes (cost-effectiveness and return on investment), and implementation outcomes (adoption, sustainability and organisational change). METHODS: UPSIDES-RCT is a pragmatic, parallel-group, multicentre, randomised controlled trial assessing the effectiveness of using peer support in developing empowering mental health services (UPSIDES) at four measurement points over 1 year (baseline, 4-, 8- and 12-month follow-up), with embedded process evaluation and cost-effectiveness analysis. Research will take place in a range of high-, middle- and low-income countries (Germany, UK, Israel, India, Uganda and Tanzania). The primary outcome is social inclusion of service users with severe mental illness (N = 558; N = 93 per site) at 8-month follow-up, measured with the Social Inclusion Scale. Secondary outcomes include empowerment (using the Empowerment Scale), hope (using the HOPE scale), recovery (using Stages of Recovery) and health and social functioning (using the Health of the Nations Outcome Scales). Mixed-methods process evaluation will investigate mediators and moderators of effect and the implementation experiences of four UPSIDES stakeholder groups (service users, peer support workers, mental health workers and policy makers). A cost-effectiveness analysis examining cost-utility and health budget impact will estimate the value for money of UPSIDES peer support. DISCUSSION: The UPSIDES-RCT will explore the essential components necessary to create a peer support model in mental health care, while providing the evidence required to sustain and eventually scale-up the intervention in different cultural, organisational and resource settings. By actively involving and empowering service users, UPSIDES will move mental health systems toward a recovery orientation, emphasising user-centredness, community participation and the realisation of mental health as a human right. TRIAL REGISTRATION: ISRCTN, ISRCTN26008944. Registered on 30 October 2019.

Factors influencing the intention of students to work with individuals with intellectual disabilities.

Providing adequate care to individuals with intellectual disability (ID) requires the willingness of students in various health and social professions to care for this population upon completion of their studies. The aim of the current study was to examine the factors associated with the intentions of students from various fields to work with individuals with ID, using the framework of the Theory of Planned Behavior. A structured self-administered questionnaire was completed by 512 social work, occupational therapy, speech and language therapy, special education, and nursing students. The questionnaire measured students' attitudes toward individuals with ID and toward working with this population, as well as their perceptions of subjective norms, controllability, self-efficacy, prior acquaintance with individuals with ID, and subjective knowledge about ID. Structural equation modeling showed that the students' intentions to work with individuals with ID were predicted by their attitudes and perceptions of subjective norms. Field of study and subjective knowledge were also found to be predictive of behavioral intention. The TPB proved to be a useful framework for examining students' intentions to work with persons with ID. Given the lack of education in the field of ID, as well as the prevailing stigmatic attitudes toward this population, university departments should develop programs aimed at increasing knowledge, promoting positive contact, and reducing the fear attached to working with persons with intellectual disability.