Implementation of peer support for people with severe mental health conditions in high-, middle- and low-income-countries: a theory of change approach.

BACKGROUND: Stakeholder engagement is essential to the design, implementation and evaluation of complex mental health interventions like peer support. Theory of Change (ToC) is commonly used in global health research to help structure and promote stakeholder engagement throughout the project cycle. Stakeholder insights are especially important in the context of a multi-site trial, in which an intervention may need to be adapted for implementation across very different settings while maintaining fidelity to a core model. This paper describes the development of a ToC for a peer support intervention to be delivered to people with severe mental health conditions in five countries as part of the UPSIDES trial. METHODS: One hundred thirty-four stakeholders from diverse backgrounds participated in a total of 17 workshops carried out at six UPSIDES implementing sites across high-, middle- and low-income settings (one site each in India, Israel, Uganda and Tanzania; two sites in Germany). The initial ToC maps created by stakeholders at each site were integrated into a cross-site ToC map, which was then revised to incorporate additional insights from the academic literature and updated iteratively through multiple rounds of feedback provided by the implementers. RESULTS: The final ToC map divides the implementation of the UPSIDES peer support intervention into three main stages: preparation, implementation, and sustainability. The map also identifies three levels of actors involved in peer support: individuals (service users and peer support workers), organisations (and their staff members), and the public. In the UPSIDES trial, the ToC map proved especially helpful in characterising and distinguishing between (a) common features of peer support, (b) shared approaches to implementation and (c) informing adaptations to peer support or implementation to account for contextual differences. CONCLUSIONS: UPSIDES is the first project to develop a multi-national ToC for a mental health peer support intervention. Stakeholder engagement in the ToC process helped to improve the cultural and contextual appropriateness of a complex intervention and ensure equivalence across sites for the purposes of a multi-site trial. It may serve as a blueprint for implementing similar interventions with a focus on recovery and social inclusion among people with mental ill-health across diverse settings. TRIAL REGISTRATION: ISRCTN26008944 (Registration Date: 30/10/2019).

Development of the UPSIDES global mental health training programme for peer support workers: Perspectives from stakeholders in low, middle and high-income countries.

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.

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.

[Successful Implementation of Peer Support for People with Severe Mental Illness in Germany: a Theory of Change Approach]. / Eine Theory of Change zur erfolgreichen Implementierung von Peer-Begleitung für Menschen mit schweren psychischen Erkrankungen in Deutschland.

OBJECTIVE: Peer support is an established intervention in which people with mental illness receive support by trained peer support workers who have already overcome a mental health crisis. The implementation of peer support is complex due to interacting factors and can be achieved through the participatory Theory of Change method. Aim of this study is to develop a cross-site Theory of Change for the sustainable implementation of UPSIDES peer support in Germany. METHODS: Based on site-specific Theories of Change workshops from Ulm and Hamburg in which 47 participants took part, a cross-site Theory of Change was designed and verified in three follow-up workshops with 12 participants. Participants' professional and experiential backgrounds were diverse, including peer support workers, hospital directors and managers, mental health professionals (psychiatrists, psychotherapists, nurses), and researchers. RESULTS: The first pathway of the cross-site Theory of Change focuses on the training of peer support workers, whereas the second pathway emphasizes recognition and integration by mental health institutions and professionals. The third pathway specifies the building of a cross-professional care network to integrate various peer support services. Procedures to approach prospective peer clients are depicted in the fourth pathway. The fifth path addresses the clarification of the role description of peer support workers and the implementation in other institutions through cooperation. DISCUSSION: Many of the identified implementation steps have been validated in comparable studies. The development of this Theory of Change by bringing together multiple perspectives of key stakeholders is an important basis for the sustainable implementation of UPSIDES peer support. Furthermore, it may serve as a blueprint for the implementation of similar interventions to advance scaling-up of evidence-based user-led and recovery-oriented interventions. CONCLUSION: The Theory of Change approach is a well-accepted and feasible method, which can be recommended for the implementation of complex interventions such as UPSIDES peer support.

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.

Impact of clinical decision-making participation and satisfaction on outcomes in mental health practice: results from the CEDAR European longitudinal study.

The present study aimed to assess: (1) whether a more active involvement of patients is associated with an improvement of clinical symptoms, global functioning, and quality-of-life; and (2) how patients' satisfaction with clinical decisions can lead to better outcome after 1 year. Data were collected as part of the study 'Clinical decision-making and outcome in routine care for people with severe mental illness (CEDAR)', a longitudinal observational study, funded by the European Commission and carried out in six European countries. Patients' inclusion criteria were: (a) aged between 18 and 60 years; (b) diagnosis of a severe mental illness of any kind according to the Threshold Assessment Grid (TAG) ≥ 5 and duration of illness ≥ 2 years; (c) expected contact with the local mental health service during the 12-month observation period; (d) adequate skills in the language of the host countries; and (e) the ability to provide written informed consent. The clinical decision-making styles of clinicians and the patient satisfaction with decisions were assessed using the Clinical Decision Making Style and the Clinical Decision Making Involvement and Satisfaction scales, respectively. Patients were assessed at baseline and 1 year after the recruitment. The sample consisted of 588 patients with severe mental illness, mainly female, with a mean age of 41.69 (±10.74) and a mean duration of illness of 12.5 (±9.27) years. The majority of patients were diagnosed with psychotic (45.75%) or affective disorders (34.01%). At baseline, a shared CDM style was preferred by 70.6% of clinicians and about 40% of patients indicated a high level of satisfaction with the decision and 31% a medium level of satisfaction. Higher participation in clinical decisions was associated with improved social functioning and quality-of-life, and reduced interpersonal conflicts, sense of loneliness, feelings of inadequacy, and withdrawal in friendships after 1 year (p < 0.05). Moreover, a higher satisfaction with decisions was associated with a better quality-of-life (p < 0.0001), reduced symptom severity (p < 0.0001), and a significantly lower illness burden associated with symptoms of distress (p < 0.0001), interpersonal difficulties (p < 0.0001), and problems in social roles (p < 0.05). Our findings clearly show that a higher involvement in and satisfaction of patients with clinical decision-making was associated with better outcomes. More efforts have to be made to increase the involvement of patients in clinical decision-making in routine care settings.

Typology of modifications to peer support work for adults with mental health problems: systematic review.

BACKGROUND: Peer support work roles are being implemented internationally, and increasingly in lower-resource settings. However, there is no framework to inform what types of modifications are needed to address local contextual and cultural aspects. AIMS: To conduct a systematic review identifying a typology of modifications to peer support work for adults with mental health problems. METHOD: We systematically reviewed the peer support literature following PRISMA guidelines for systematic reviews (registered on PROSPERO (International Prospective Register of Systematic Reviews) on 24 July 2018: CRD42018094832). All study designs were eligible and studies were selected according to the stated eligibility criteria and analysed with standardised critical appraisal tools. A narrative synthesis was conducted to identify types of, and rationales for modifications. RESULTS: A total of 15 300 unique studies were identified, from which 39 studies were included with only one from a low-resource setting. Six types of modifications were identified: role expectations; initial training; type of contact; role extension; workplace support for peer support workers; and recruitment. Five rationales for modifications were identified: to provide best possible peer support; to best meet service user needs; to meet organisational needs, to maximise role clarity; and to address socioeconomic issues. CONCLUSIONS: Peer support work is modified in both pre-planned and unplanned ways when implemented. Considering each identified modification as a candidate change will lead to a more systematic consideration of whether and how to modify peer support in different settings. Future evaluative research of modifiable versus non-modifiable components of peer support work is needed to understand the modifications needed for implementation among different mental health systems and cultural settings.