Perspectives of key informants before and after implementing UPSIDES peer support in mental health services: qualitative findings from an international multi-site study.

BACKGROUND: Peer support is an essential part of recovery-oriented care worldwide. Contextual factors have an impact on the implementation of peer support work. However, research has paid little attention to similarities and differences of implementation factors in settings varying by income-level and cultural values. The aim of this study is to assess the factors influencing the implementation of a peer support intervention across study sites in low-, middle- and high-income countries in line with the Consolidation Framework for Implementation Research (CFIR). METHOD: 6 focus groups with a total of 54 key informants with relevant contextual (organisational) knowledge regarding implementation facilitators and barriers were conducted at six study sites Ulm and Hamburg (Germany), Butabika (Uganda), Dar es Salaam (Tanzania), Be'er Sheva (Israel), and Pune (India) before and 1.5 years after the start of UPSIDES peer support. Transcripts were analysed using qualitative content analysis. RESULTS: Across study sites key informants reported benefits of peer support for service users and peer support workers as implementation facilitators. At study sites with lower resources, reduced workload for mental health workers and improved access to mental health services through peer support were perceived as implementation facilitators (CFIR Domain 1: Intervention characteristics). The degree of engagement of mental health workers (CFIR Domain 3: Inner Setting/Domain 4: Individuals involved) varied across study sites and was seen either as a barrier (low engagement) or a facilitator (high engagement). Across study sites, adequate training of peer support workers (CFIR Domain 5: Implementation process) was seen as animplementation facilitator, while COVID-19 as well as low resource availability were reported as implementation barriers (CFIR Domain 2: Outer setting). CONCLUSIONS: This study highlights the importance of considering contextual factors when implementing peer support, including previous experience and perceived benefits. Particular attention should be given to organisational benefits such as workload reduction and the allocation of sufficient resources as key drivers in LMICs. In HICs, the potential of organisational benefits for successful implementation should be further investigated and promoted.

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).

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.

[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.

Mental health workers' perspectives on peer support in high-, middle- and low income settings: a focus group study.

BACKGROUND: Peer support is increasingly acknowledged as an integral part of mental health services around the world. However, most research on peer support comes from high-income countries, with little attention to similarities and differences between different settings and how these affect implementation. Mental health workers have an important role to play in integrating formal peer support into statutory services, and their attitudes toward peer support can represent either a barrier to or facilitator of successful implementation. Thus, this study investigates mental health workers' attitudes toward peer support across a range of high- (Germany, Israel), middle- (India), and low-income country (Tanzania, Uganda) settings. METHODS: Six focus groups were conducted in Ulm and Hamburg (Germany), Butabika (Uganda), Dar es Salaam (Tanzania), Be'er Sheva (Israel), and Ahmedabad, Gujarat (India) with a total of 35 participants. Transcripts were analyzed using thematic content analysis. RESULTS: Participants across the study sites demonstrated overall positive attitudes towards peer support in mental health care, although some concerns were raised on potentially harmful effects of peer support such as negative role modelling and giving inadequate advice to service users. Notably, mental health workers from low- and middle-income countries described peer support workers as bridge-builders and emphasized the mutual benefits of peer support. Mental health workers' views on peer support workers' roles and role boundaries differed between sites. In some settings, mental health workers strongly agreed on the need for role clarity, whereas in others, mental health workers expressed mixed views, with some preferring blurred role boundaries. Regarding collaboration, mental health workers described peer support workers as supporters and utilizers, equal partners or emphasized a need for trust and commitment. CONCLUSIONS: Mental health workers' attitudes toward peer support workers were positive overall, but they also varied depending on local context, resources and previous experiences with peer support. This affected their conceptions of peer support workers' roles, role clarity, and collaboration. This study demonstrated that reconciling the need for local adaptations and safeguarding the core values of peer support is necessary and possible, especially when the implementation of recovery-oriented interventions such as peer support is accelerating worldwide.

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.

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.

A systematic review of influences on implementation of peer support work for adults with mental health problems.

PURPOSE: The evidence base for peer support work in mental health is established, yet implementation remains a challenge. The aim of this systematic review was to identify influences which facilitate or are barriers to implementation of mental health peer support work. METHODS: Data sources comprised online databases (n = 11), journal table of contents (n = 2), conference proceedings (n = 18), peer support websites (n = 2), expert consultation (n = 38) and forward and backward citation tracking. Publications were included if they reported on implementation facilitators or barriers for formal face-to-face peer support work with adults with a mental health problem, and were available in English, French, German, Hebrew, Luganda, Spanish or Swahili. Data were analysed using narrative synthesis. A six-site international survey [Germany (2 sites), India, Israel, Tanzania, Uganda] using a measure based on the strongest influences was conducted. The review protocol was pre-registered (Prospero: CRD42018094838). RESULTS: The search strategy identified 5813 publications, of which 53 were included. Fourteen implementation influences were identified, notably organisational culture (reported by 53% of papers), training (42%) and role definition (40%). Ratings on a measure using these influences demonstrated preliminary evidence for the convergent and discriminant validity of the identified influences. CONCLUSION: The identified influences provide a guide to implementation of peer support. For services developing a peer support service, organisational culture including role support (training, role clarity, resourcing and access to a peer network) and staff attitudes need to be considered. The identified influences provide a theory base to prepare research sites for implementing peer support worker interventions.

Lost in transition? Professional perspectives on transitional mental health services for young people in Germany: a qualitative study.

BACKGROUND: The transition of young patients from child and adolescent to adult mental health services often results in the interruption or termination of care. At this intersection, mental health professionals function as gatekeepers between systems, and their personal views on current clinical practice can contribute to a broader understanding of procedures and help identify reasons for service gaps. This qualitative study investigated the views of mental health professionals on services for young people during the transition from child and adolescent to adult mental health care, as well as on factors which facilitate or hinder continuity of care. METHODS: Four group discussions with 24 mental health professionals with various backgrounds were conducted. Groups were audio-taped, transcribed verbatim and analyzed following the reconstructive approach of R. Bohnsack's documentary method. RESULTS: A main theme and six subthemes emerged. Participants' overall concern was an increasing lack of patient centeredness in care provision. They criticized the limited flexibility and time constraints of their work, which was held to be incompatible with the time-consuming process of engaging young patients in care and coping with their individual needs. A lack of adequate interprofessional exchange and networking was seen as resulting in a diffuse sense of responsibility and a lack of clarity for all involved parties. Participants focused on the adverse impact of neglecting developmental characteristics in care procedures for young patients and revealed personal issues they experienced in their work with young patients (e. g. personal difficulties with diagnosing). CONCLUSIONS: Mental health professionals at this transitional point face a number of complex tasks as well as limitations in terms of time and personal support. An emphasis should be placed on forming and maintaining partnerships within and between systems which could contribute significantly to relieving professionals' workload. Furthermore, an open style of communication to engage young patients in care is essential. Strengthening communicative skills, improving knowledge about this life stage (especially when working in adult services), and promoting interprofessional encounters can help to develop new procedures in clinical practice. On higher system levels, heightened awareness of the need to reduce fragmentation of care and administrative barriers is needed.

Self- and proxy-rated needs in adults with mild to moderate intellectual disabilities: Perspective matters.

BACKGROUND: Adults with an intellectual disability should be supported according to their individual needs. The perception of need, however, is influenced by the values and expectations of the judging person. METHOD: Using the Camberwell Assessment of Need for Adults with Developmental and Intellectual Disabilities, self- and proxy-rated needs of n = 193 adults with mild to moderate intellectual disability were compared. RESULTS: Mean total needs and met needs, but not unmet needs, differed significantly between perspectives. As concerns the assessment of specific areas of need, indices revealed a complex and multifaceted pattern of agreement and disagreement. CONCLUSION: Different viewpoints should be considered when assessing needs among adults with intellectual disability. With respect to areas other than basic, everyday areas of need, involvement of the adult with intellectual disability is strongly recommended. The assessment of mental health problems requires the involvement of clinical professionals, assessing problem behavior broad diagnostic measures beyond a standardized instrument.

Recovery and decision-making involvement in people with severe mental illness from six countries: a prospective observational study.

BACKGROUND: Clinical decision-making is the vehicle of health care provision, and level of involvement predicts implementation and satisfaction. The aim of this study was to investigate the impact of decision-making experience on recovery. METHODS: Data derived from an observational cohort study "Clinical decision making and outcome in routine care for people with severe mental illness" (CEDAR). Adults (aged 18-60) meeting standardised criteria for severe mental illness were recruited from caseloads of outpatient and community mental health services in six European countries. After consenting, they were assessed using standardised measures of decision-making, clinical outcome and stage of recovery at baseline and 1 year later. Latent class analysis was used to identify course of recovery, and proportional odds models to investigate predictors of recovery stage and change. RESULTS: Participants (n = 581) clustered into three stages of recovery at baseline: Moratorium (N = 115; 19.8%), Awareness/Preparation (N = 145; 25.0%) and Rebuilding/Growth (N = 321; 55.2%). Higher stage was cross-sectionally associated with being male, married, living alone or with parents, and having better patient-rated therapeutic alliance and fewer symptoms. The model accounted for 40% of the variance in stage of recovery. An increased chance of worse outcome (change over 1 year to lower stage of recovery) was found for patients with active involvement compared with either shared (OR = 1.84, 95% CI 1.15-2.94) or passive (OR = 1.71, 95% CI = 1.00-2.95) involvement. Overall, both process (therapeutic relationship) and outcome (symptomatology) are cross-sectionally associated with stage of recovery. CONCLUSIONS: Patient-rated decision-making involvement and change in stage of recovery are associated. Joint consideration of decision practise within the recovery process between patient and clinician is supposed to be a useful strategy to improve clinical practice (ISRCTN registry: ISRCTN75841675. Retrospectively registered 15 September 2010).

Helping Alliance and Unmet Needs in Routine Care of People With Severe Mental Illness Across Europe: A Prospective Longitudinal Multicenter Study.

The helping alliance (HA) refers to the collaborative bond between patient and therapist, including shared goals and tasks. People with severe mental illness have a complex mixture of clinical and social needs. Using mixed-effects regression, this study examined in 588 people with severe mental illness whether an increase in the HA is associated with fewer unmet needs over time, and whether change in the HA precedes change in unmet needs. It was found that a reduction in unmet needs was slower in patients with higher HA (B = 0.04, p < 0.0001) only for patient-rated measures. Improvement in both patient-rated and staff-rated HA over time was associated with fewer subsequent patient-rated (B = -0.10, p < 0.0001) and staff-rated (B = -0.08, p = 0.0175) unmet needs. With positive changes in the HA preceding fewer unmet needs, findings provide further evidence for a causal relationship between alliance and outcome in the treatment of people with severe mental illness.

Effectiveness of interventions for adults with mild to moderate intellectual disabilities and mental health problems: systematic review and meta-analysis.

BACKGROUND: There is a lack of available evidence in relation to the effectiveness of interventions for adults with mild to moderate intellectual disability and mental health problems. AIMS: To evaluate the efficacy of interventions for adults with mild to moderate intellectual disabilities and co-occurring mental health problems. METHOD: An electronic literature search of the databases Medline, EMBASE, PsycINFO and EBM Reviews aimed at identifying randomised controlled trials (RCTs) and controlled trials testing any type of intervention (psychotherapy, biological or system level) for people with mild to moderate intellectual disabilities (IQ score 35-69) targeting comorbid mental health problems. Additionally a meta-analysis was conducted. RESULTS: Twelve studies met the inclusion criteria. No significant effect was found for the predefined outcome domains behavioural problems, depression, anxiety, quality of life and functioning. The effect size for depression (d = 0.49) was moderate but non-significant. Quality of studies was moderate and heterogeneity was high. CONCLUSIONS: There is no compelling evidence supporting interventions aiming at improving mental health problems in people with mild to moderate intellectual disability. The number of available trials is too low for definite conclusions. Some interventions are promising and should be evaluated further in larger and more rigorous trials.

Internet-Delivered Disease Management for Recurrent Depression: A Multicenter Randomized Controlled Trial.

BACKGROUND: Strategies to improve the life of patients suffering from recurrent major depression have a high relevance. This study examined the efficacy of 2 Internet-delivered augmentation strategies that aim to prolong symptom-free intervals. METHODS: Efficacy was tested in a 3-arm, multicenter, open-label, evaluator-blind, randomized controlled trial. Upon discharge from inpatient mental health care, 232 adults with 3 or more major depressive episodes were randomized to 1 of 2 intervention groups (SUMMIT or SUMMIT-PERSON) or to treatment as usual (TAU) alone. Over 12 months, participants in both intervention arms received, in addition to TAU, intense monitoring via e-mail or a smartphone, including signaling of upcoming crises, assistance with personal crisis management, and facilitation of early intervention. SUMMIT-PERSON additionally offered regular expert chats. The primary outcome was 'well weeks', i.e. weeks with at most mild symptoms assessed by the Longitudinal Interval Follow-Up Evaluation, during 24 months after the index treatment. RESULTS: SUMMIT compared to TAU reduced the time with an unwell status (OR 0.48; 95% CI 0.23-0.98) through faster transitions from unwell to well (OR 1.44; 95% CI 0.83-2.50) and slower transitions from well to unwell (OR 0.69; 95% CI 0.44-1.09). Contrary to the hypothesis, SUMMIT-PERSON was not superior to either SUMMIT (OR 0.77; 95% CI 0.38-1.56) or TAU (OR 0.62; 95% CI 0.31-1.24). The efficacy of SUMMIT was strongest 8 months after the intervention. CONCLUSIONS: The fully automated Internet-delivered augmentation strategy SUMMIT has the potential to improve TAU by reducing the lifelong burden of patients with recurrent depression. The fact that the effects wear off suggests a time-unlimited extension.

Mental illness, problem behaviour, needs and service use in adults with intellectual disability.

PURPOSE: Mental ill health in adults with intellectual disability (ID) is a neglected field in psychiatry and thus still widely understudied. This paper provides data on the prevalence of mental illness and problem behaviour and analyses support needs, mental health service use and psychotropic medication in a representative sample of adults with mild to moderate ID. METHODS: A set of well-established instruments was used to assess the main parameters in n = 371 participants recruited within a cross-sectional epidemiological multicentre study using a stratified randomised cluster sampling. RESULTS: Point prevalence of mental disorders was 10.8 %, that of problem behaviour 45.3 %. Most study participants needed help in specific lower order need areas (e.g., money budgeting, food, accommodation), and these need areas were mostly rated as met. The highest ratios of unmet to met need were found with respect to sexuality issues and with respect to mental health problems. The focus of psychiatric treatment was psychotropic medication. CONCLUSIONS: Referring to ICD-10 based diagnostic criteria and consequently avoiding confusing problem behaviour with mental disorders, point prevalence of mental disorders was lower than in the general population. A systematic deficit in meeting mental health problems in adults with ID indicates the need for implementing strategies to maximise the quality of identification and management of mental disorders.

Routine outcome measures in Germany.

The German healthcare system offers comprehensive coverage for people with mental illness including inpatient, day hospital and outpatient services. These services are primarily financed through the statutory health and pension insurances. According to legal regulations, providers are required to base their services on current scientific evidence and to continuously assure the quality of their services. This paper gives an overview of recent initiatives to develop, evaluate and disseminate routine outcome measurement (ROM) in service settings in Germany. A large number of projects have shown outcome monitoring to be feasible, and that feedback of outcome may enhance routine care through an improved allocation of treatment resources. However, none of these initiatives have been integrated into routine care on a nationwide or trans-sectoral level, and their sustainability has been limited. This is due to various barriers in a fragmented mental health service system and to the lack of coordinated national or state-level service planning. The time is ripe for a concerted effort including policy-makers to pick up on these initiatives and move them towards wide-spread implementation in routine care accompanied by practice-oriented research including service user involvement.

Courses of helping alliance in the treatment of people with severe mental illness in Europe: a latent class analytic approach.

PURPOSE: The helping alliance (HA) between patient and therapist has been studied in detail in psychotherapy research, but less is known about the HA in long-term community mental health care. The aim of this study was to identify typical courses of the HA and their predictors in a sample of people with severe mental illness across Europe over a measurement period of one year. METHODS: Self-ratings of the HA by 588 people with severe mental illness who participated in a multicentre European study (CEDAR; ISRCTN75841675) were examined using latent class analysis. RESULTS: Four main patterns of alliance were identified: (1) high and stable (HS, 45.6 %), (2) high and increasing (HI, 36.9 %), (3) high and decreasing (HD, 11.3 %) and (4) low and increasing (LI, 6.1 %). Predictors of class membership were duration of illness, ethnicity, and education, receipt of state benefits, recovery, and quality of life. CONCLUSIONS: Results support findings from psychotherapy research about a predominantly stable course of the helping alliance in patients with severe mental illness over time. Implications for research and practice indicate to turn the attention to subgroups with noticeable courses.

Content and implementation of clinical decisions in the routine care of people with severe mental illness.

BACKGROUND: Clinical decision making (CDM) in the treatment of people with severe mental illness relates to a wide range of life domains. AIMS: To examine content of CDM in mental health care from the perspectives of service users and staff and to investigate variation in implementation of decisions for differing content. METHOD: As part of the European multicenter study clinical decision making and outcome in routine care for people with severe mental illness (ISRCTN75841675), 588 service users and their clinicians were asked to identify the decisions made during their last meeting. Decisions were then coded into content categories. Two months later, both parties reported if these decisions had been implemented. RESULTS: Agreement between patients and staff regarding decision making was moderate (k = 0.21­0.49; p < 0.001). Decisions relating to medication and social issues were most frequently identified. Overall reported level of implementation was 73.5% for patients and 74.7% for staff, and implementation varied by decision content. CONCLUSIONS: A variety of relevant decision topics were shown for mental health care.Implementation rates varied in relation to topic and may need different consideration within the therapeutic dyad.

Desire for information of people with severe mental illness.

PURPOSE: To assess (1) the desire of people with severe mental illness for information on their treatment and (2) whether the desire for information is associated with socio-demographic variables, diagnosis, illness duration, therapeutic relationship, needs and symptom severity. METHODS: 588 outpatients with severe mental illness were recruited in six European countries (Germany, Denmark, Hungary, Italy, Switzerland, United Kingdom) during the "Clinical decision making and outcome in routine care of people with severe mental illness (CEDAR)" study (ISRCTN75841675). Desire for information was assessed by the Information subscale of the Clinical Decision Making Style Scale. Study participants with high desire for information were compared with those with moderate or low desire for information. RESULTS: 80 % of study participants (n = 462) wanted to receive information on all aspects of their treatment (management, prognosis, alternative options for care). Participants with a high desire for information had less severe symptoms (OR = 0.988, CI = 0.977-1.000) and a better self-rated therapeutic alliance (OR = 1.304, CI = 1.130-1.508) with their clinician. CONCLUSIONS: Most, but not all, people with severe mental illness have a high desire for information. Desire for information is associated with variables, such as therapeutic relationship and symptom severity, which are amenable to change during treatment.

The development and evaluation of a five-language multi-perspective standardised measure: clinical decision-making involvement and satisfaction (CDIS).

BACKGROUND: The aim of this study was to develop and evaluate a brief quantitative five-language measure of involvement and satisfaction in clinical decision-making (CDIS) - with versions for patients (CDIS-P) and staff (CDIS-S) - for use in mental health services. METHODS: An English CDIS was developed by reviewing existing measures, focus groups, semistructured interviews and piloting. Translations into Danish, German, Hungarian and Italian followed the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Task Force principles of good practice for translation and cultural adaptation. Psychometricevaluation involved testing the measure in secondary mental health services in Aalborg, Debrecen, London, Naples, Ulm and Zurich. RESULTS: After appraising 14 measures, the Control Preference Scale and Satisfaction With Decision-making English-language scales were modified and evaluated in interviews (n = 9), focus groups (n = 22) and piloting (n = 16). Translations were validated through focus groups (n = 38) and piloting (n = 61). A total of 443 service users and 403 paired staff completed CDIS. The Satisfaction sub-scale had internal consistency of 0.89 (0.86-0.89 after item-level deletion) for staff and 0.90 (0.87-0.90) for service users, both continuous and categorical (utility) versions were associated with symptomatology and both staff-rated and service userrated therapeutic alliance (showing convergent validity), and not with social disability (showing divergent validity), and satisfaction predicted staff-rated (OR 2.43, 95%CI 1.54- 3.83 continuous, OR 5.77, 95%CI 1.90-17.53 utility) and service user-rated (OR 2.21, 95%CI 1.51-3.23 continuous, OR 3.13, 95%CI 1.10-8.94 utility) decision implementation two months later. The Involvement sub-scale had appropriate distribution and no floor or ceiling effects, was associated with stage of recovery, functioning and quality of life (staff only) (showing convergent validity), and not with symptomatology or social disability (showing divergent validity), and staff-rated passive involvement by the service user predicted implementation (OR 3.55, 95%CI 1.53-8.24). Relationships remained after adjusting for clustering by staff. CONCLUSIONS: CDIS demonstrates adequate internal consistency, no evidence of item redundancy, appropriate distribution, and face, content, convergent, divergent and predictive validity. It can be recommended for research and clinical use. CDIS-P and CDIS-S in all 3 five languages can be downloaded at http://www.cedar-net.eu/instruments. TRIAL REGISTRATION: ISRCTN75841675.