Developing sustainable service user involvement practices in mental health services in Sweden: the "Userinvolve" research program protocol.

Background: The purpose of this paper is to outline the protocol for the research program "UserInvolve," with the aim of developing sustainable, service user involvement practices in mental health services in Sweden. Methods: This protocol outlines the knowledge gap and aim of the UserInvolve-program. It further provides an overview of the research infrastructure, with specific focus on the organization and management of the program as well as the design of the six underlying research projects. These six research projects form the core of the UserInvolve-program and will be carried out during a six-year period (2022-2027). The projects are focused on examining articulations of experiential knowledge in user collectives, on four specific user involvement interventions (shared decision-making, peer support, user-focused monitoring, and systemic involvement methods) and on developing theory and method on co-production in mental health research and practice. Results or conclusion: The knowledge gained through the co-production approach will be disseminated throughout the program years, targeting service users, welfare actors and the research community. Based on these research activities, our impact goals relate to strengthening the legitimacy of and methods for co-production in the mental health research and practice field.

User-Focused Monitoring as a Strategy for Involvement and Mental Health Service Development: An Analysis of Swedish Monitoring Reports.

User-focused monitoring (UFM) is a method of evaluating mental health services, conducted by people with lived experience of mental ill health. Research on UFM and on user involvement focused on service monitoring and evaluation is lacking. This study addresses this knowledge gap by examining UFM as a strategy for user involvement. More specifically, this study aims to synthesize patterns in UFM reports to characterize the phenomenon, as well as to further discuss negotiation processes and political opportunities in UFM. The empirical material consists of 136 Swedish UFM reports that have been analyzed in two steps: All reports were mapped according to general characteristics and a sample of 20 reports were selected to provide additional information on the method. This study has been conducted in collaboration with actors representing the user movement and municipality-based mental health services. Our analysis shows that long-term contracts between user organizations and service providers are important to create a sustainable implementation of UFM. However, strategies to protect user autonomy must be carefully considered and employed in relation to such collaborations. We further highlight the risks of a restricted focus on consumer satisfaction, and discuss the current development towards including follow-ups in the UFM process as a strategy for counteracting tokenism.

Implementation of a novel return-to-work approach for persons with affective disorders in a traditional vocational rehabilitation context: a case study.

BACKGROUND: The person-centred Individual Enabling and Support (IES) model is a novel return-to-work (RTW) intervention for people with affective disorders that was developed from evidence-based supported employment for persons with severe mental illness. Typically, supported employment is integrated into mental healthcare and provides a network around the service user and close collaboration with employment and insurance services and employers. Introducing integrated models into a highly sectored welfare system that includes traditional mental healthcare and vocational rehabilitation is challenging. Greater knowledge is needed to understand how facilitating or hindering factors influence this introduction. The aim of this study was to investigate essential components in implementation of the IES model. METHODS: A case-study was conducted and included four mental healthcare services. Data collection was comprised of semi-structured interviews with 19 key informants, documentation from meetings, and reflection notes. Analyses were performed according to directed content analysis, using the components of the Consolidated Framework of Implementation Research (CFIR) as a guiding tool. Fidelity assessments were performed at 6 and 12 months. RESULTS: Anticipating RTW support for the target group, and building collaborative relationships and a network with employment specialists that engaged staff in every organization were components that resulted in the greatest facilitation if IES implementation. Barriers consisted of difficulty in integrating employment specialists into the mental healthcare teams, insufficient engagement of first line managers, reorganization and differing perceptions of the IES model fit into a traditional vocational context. Delivery of the IES model had good fidelity. CONCLUSIONS: The IES model can be implemented with good fidelity, several model advantages, and context adaptation. Team integration difficulties and negative perceptions of model fit in a traditional vocational rehabilitation context can be overcome to a certain degree, but this is insufficient for sustainable implementation on a larger scale. Policy and guidelines need to promote integrative and person-centred RTW approaches rather than a segregated stepwise approach. Further implementation studies in the traditional vocational rehabilitation context are needed.

Enabling the return-to-work process among people with affective disorders: A multiple-case study.

BACKGROUND: The Individual Enabling and Support (IES) model is an adapted, supported employment program developed to meet motivational, cognitive and time-use needs of people with affective disorders. Vocational programs for this target group have been developed but more knowledge is needed about the important characteristics and perceived usefulness of the programs. The aim of this study was to illustrate the IES model and process from multiple perspectives. METHODS: Five participants were included in this multiple-case study. The material comprised interviews with participants, intervention documents, memos and interviews with employment specialists. Within and cross-case analyzes and an analytical generalization were performed. RESULTS: The cases illustrated different IES processes, and the theme; Enabling engagement in return to work (RTW) was formulated. Continuous support from the employment specialist and a focus on personal resources and motivation were essential to overcome low self-confidence regarding RTW. Motivational, cognitive and time-use strategies gave an opportunity to learn new behavior and coping strategies for job seeking, getting employed and working. CONCLUSION: Providing a combination of these strategies integrated with supported employment could promote self-efficacy and engagement in the RTW process among people on sick leave due to an affective disorder.

Complex Interventions and Interorganisational Relationships: Examining Core Implementation Components of Assertive Community Treatment.

INTRODUCTION: There is increasing interest in implementing evidence-based integrated models of care in community-based mental health service systems. Assertive Community Treatment (ACT) is seen as an attractive, and at the same time challenging, model to implement in sectored service settings. This study investigates the implementation process of such an initiative. METHODS: Interviews were conducted with ACT team members, the process leader, steering group members, and collaboration partners. The "Sustainable Implementation Scale" helped to identify critical implementation components, and these were further explored using the qualitative interview data. The "Tool for Measuring Assertive Community Treatment" addressed programme fidelity, and the initiative's sustainability was assessed. RESULTS: High-fidelity implementation of ACT in a sectored service setting is possible. Prominent components that facilitated implementation were careful preparations, team members' characteristics, and efforts by the process leader and the steering group to improve networking. Implementation was hampered by conflicting goals among the involved authorities and a mismatch between the ACT model's characteristics and existing organisational traditions and regulations. DISCUSSION AND CONCLUSIONS: Reducing the uncertainty caused by conflicting goals is an important step in improving the implementation of ACT. In order to facilitate implementation, the goals, regulations, and availability of resources should be aligned horizontally and vertically through the involved organisations.

Quality of life among people with psychiatric disabilities attending community-based day centres or Clubhouses.

BACKGROUND: People with psychiatric disability have been found to have a poorer quality of life (QOL) compared to the general population, and QOL is an important outcome from psychosocial rehabilitation. AIMS: This study aimed at comparing users of two approaches to psychosocial rehabilitation in Sweden, community-based mental health day centres (DCs) and clubhouses, regarding QOL. A further aim was to investigate predictors of QOL. METHODS: People regularly attending DCs (n = 128) or clubhouses (n = 57) completed questionnaires at baseline and a 9-month follow-up about socio-demographics, QOL, self-esteem, social network, satisfaction with daily occupations, satisfaction with services and the unit's organisation. RESULTS: Quality of life remained stable over time in both groups. QOL at follow-up was associated with baseline self-esteem, social network, satisfaction with daily occupations and QOL at baseline. The strongest indicator of a higher QOL at follow-up was attending a clubhouse programme followed by having scored high on QOL at baseline. CONCLUSION: Both approaches were suited for supporting their users in maintaining QOL. Visiting clubhouses seems, however, advantageous for QOL in a longer-term perspective. Although this study contributed some new knowledge, research should further address which circumstances are associated with maintaining stability in QOL.

What influences a sustainable implementation of evidence-based interventions in community mental health services? Development and pilot testing of a tool for mapping core components.

BACKGROUND: An important aspect of research regarding the implementation of evidence-based practice is the sustainability and long-term stability of a programme. There is a need to measure these critical components for establishing successful programmes. AIM: The aim was to develop and pilot test the sustainable implementation scale (SIS) for measuring the critical components in the sustainable implementation of community mental health services. METHOD: The scale was based on implementation research and consisted of three subscales regarding (1) the organisational level, (2) the team level and (3) continuous support. Data from interviews and documents were collected from 14 programmes implementing the Individual Placement and Support model of supported employment. RESULTS: Internal consistency was acceptable for all subscales and for the scale as a whole. Regarding the scale, an analysis of the differences between fully established programmes and the programmes that were not established or were or only partially established after three years showed statistically significant differences, indicating that a greater number of implementation components were present in the fully established programmes. CONCLUSIONS: SIS showed both good reliability and acceptable internal consistency as well as the ability to predict programme survival.

Survey on Tuberculosis Patients in Rural Areas in China: Tracing the Role of Stigma in Psychological Distress.

Depressed patients had risks of non-adherence to medication, which brought a big challenge for the control of tuberculosis (TB). The stigma associated with TB may be the reason for distress. This study aimed to assess the psychological distress among TB patients living in rural areas in China and to further explore the relation of experienced stigma to distress. This study was a cross-sectional study with multi-stage randomized sampling for recruiting TB patients. Data was collected by the use of interviewer-led questionnaires. A total of 342 eligible and accessible TB patients being treated at home were included in the survey. Psychological distress was measured using the Kessler Psychological Distress Scale (K10). Experienced stigma was measured using a developed nine-item stigma questionnaire. Univariate analysis and multiple logistic regression were used to analyze the variables related to distress, respectively. Odds ratios (ORs) and 95% confidence intervals (CIs) were used to present the strength of the associations. Finally, the prediction of logistic model was assessed in form of the Receiver Operating Characteristic (ROC) curve and the area under the ROC curve (AUC). According to the referred cut-off point from K10, this study revealed that 65.2% (223/342) of the participants were categorized as having psychological distress. Both the stigma questionnaire and the K10 were proven to be reliable and valid in measurement. Further analysis found that experienced stigma and illness severity were significant variables to psychological distress in the model of logistic regression. The model was assessed well in predicting distress by use of experienced stigma and illness severity in form of ROC and AUC. Rural TB patients had a high prevalence of psychological distress. Experience of stigma played a significant role in psychological distress. To move the barrier of stigma from the surroundings could be a good strategy in reducing distress for the patients and TB controlling for public health management.

Detection of Low Adherence in Rural Tuberculosis Patients in China: Application of Morisky Medication Adherence Scale.

The detection and analysis of cases of low medication adherence is important for helping to control tuberculosis (TB). The purpose of this study was to detect low adherence in rural TB patients by using the eight-item Morisky Medication Adherence Scale of Chinese version (C-MMAS-8) and to further analyze the adherence-related variables. A total of 358 rural TB patients recruited through multi-stage randomized sampling participated in the survey. Data were collected by the use of interviewer-led questionnaires. First, the reliability and validity of the C-MMAS-8 were determined. Second, the adherence level was assessed, and factors related to low adherence were analyzed by using Pearson's chi-square test and then in multiple logistic regression model. Finally, the prediction of the logistic model was assessed with Receiver Operating Characteristic (ROC) curves. The C-MMAS-8 could be used to detect low adherence in TB patients with good reliability and validity. By using the referred cutoff points of MMAS-8, it was found that more than one-third of the participants had low medication adherence. Further analysis revealed the variables of being older, a longer treatment time, and being depressive were significantly related to low adherence. The ROC of the model was assessed as good using the cutoff point. We conclude that appropriately tailored strategies are needed for health-care providers to help rural TB patients cope with low medication adherence.

Towards Employment: What Research Says About Support-to-Work in Relation to Psychiatric and Intellectual Disabilities.

This article presents an overview of research about support-to-work in relation to psychiatric and intellectual disabilities. The overview shows that support-to-work services are multifaceted, and that work can be seen as a tool for individual rehabilitation or as a set of goals to achieve. Providers are presented with specific components, which are characterized by systematic, targeted, and individualized interventions. The overview illustrates a need for long-term engagement and cooperation of and between welfare services and agents within the labor market to dissolve the Gordian knot that the transition from welfare interventions to employment seems to be.

Programme characteristics and everyday occupations in day centres and clubhouses in Sweden.

BACKGROUND: Meaningful everyday occupations are important for mental health and recovery and are provided by both community-based day centres (DCs) and clubhouses. It is unknown, however, if any of the two has more recovery-promoting features. OBJECTIVE: This nine-month longitudinal study compared DC and clubhouses, concerning the users' perceptions of unit and programme characteristics, and aspects of everyday occupations in terms of engagement and satisfaction. Stability over time in these respects, as well as motivation for participation and relationships with occupational engagement and satisfaction, were explored. METHODS: Participants from 10 DCs (n = 128) and 5 clubhouses (n = 57) completed self-report instruments. RESULTS: DC attendees rated lower levels on two organizational factors; choice and ability to influence decisions, and the unit's social network. Motivation showed to be an important factor for perceived occupational engagement, which did not differ between the two groups. DC attendees were more satisfied with their everyday occupations at baseline, but that factor increased more in the clubhouse group and there was no group difference at follow-up. The unit and programme characteristics and occupational engagement showed stability over time. DISCUSSION: Clubhouses seemed more advantageous and DC services may consider developing users' opportunities for choice and decision-making, and peer support.

Implementation of Choice from Participants' Perspectives: A Study of Community Mental Healthcare Reform in Sweden.

The aim of this study was to explore participants' experiences and opinions about a free-choice system in relation to policy objectives articulated by the national government and local authorities. A case study was conducted. Thirty-five informants participated. Qualitative interviews were undertaken. Results are discussed on how to address different dimensions of choice, not only where, but also what, by whom, how much, and when. They also concern how to design systems that in some ways ensure predictability and continuity to avoid unwanted harm caused by the unpredictability embedded in competitive choice systems. Finally, different aspects of quality need to be addressed.

Establishment of community mental health systems in a postdeinstitutional era: a study of organizational structures and service provision in Sweden.

This article analyzes the state of community mental health services for people with psychiatric disabilities and the interplay between different organizational levels. The study is based on document analysis and interviews with stakeholders in 10 Swedish municipalities. The results show how systems are slow to change and are linked to local traditions. The services are often delivered in closed settings, and the organizations struggle to meet the needs of a new generation of users. There is a gap between local systems and national policies because the latter pays attention to the attributes of a recovery approach.

Outcomes of a Freedom of Choice Reform in Community Mental Health Day Center Services.

A freedom-of-choice reform within mental health day center services was evaluated. The reform aimed to (1) facilitate users' change between units and (2) increase the availability of service providers. Seventy-eight users responded to questionnaires about the reform, empowerment, social network, engagement and satisfaction and were followed-up after 15 months. Fifty-four percent knew about the reform. A majority stated the reform meant nothing to them; ~25 % had a negative and ~20 % a positive opinion. Satisfaction with the services had decreased after 15 months. Empowerment decreased for a more intensively followed subgroup. No positive consequences of the reform could thus be discerned.

Staying the course? Challenges in implementing evidence-based programs in community mental health services.

This paper focuses on the second phase of the deinstitutionalisation of mental health care in which the development of community-based interventions are supposed to be implemented in local community mental health care systems. The challenge to sustainable implementation is illustrated by the Swedish case where the government put forward a national training program that sought to introduce Assertive Community Treatment (ACT) for people with severe mental illness. This study is based on document analysis and qualitative interviews with actors at the national, regional, and local levels covering a total of five regions and 15 municipalities that participated in the program. The analysis of the national experiences is put in relation to both research on public administration and policy analysis as well as to current research on implementation of evidence-based programs. The results showed a "drift" of the original model, which had already begun at the policy formulation stage and ended up in a large number of different local arrangements where only a few of the original components of ACT remained. We conclude that issues with implementation can only be fully understood by considering factors at different analytical levels.

The compliant court--procedural fairness and social control in compulsory community care.

Compulsory community care (CCC) was introduced in Sweden in 2008. This article investigates all written court decisions regarding CCC over a 6 month period in 2009 (N=541). The purpose is to examine how the legal rights of patients are protected and what forms of social control patients are subjected to. 51% of CCC patients are women and 84% are being treated for a psychosis-related disorder. In the court decisions, only 9% of patients are described as dangerous to themselves, while 18% are regarded a danger to others. The most common special provisions that patients are subjected to are medication (79%) and a requirement that they must maintain contact with either community mental health services (51%) or social services (27%). In the decisions, both the courts and court-appointed psychiatrists agree with treating psychiatrists in 99% of cases. Decisions lack transparency and clarity, and it is often impossible to understand the conclusions of the courts. There is considerable variation between regional courts as regards the provisions to which patients are subjected and the delegation of decision-making to psychiatrists. This means that decisions fail to demonstrate clarity, transparency, consistency and impartiality, and thus fail to meet established standards of procedural fairness. Surveillance techniques of social control are more common than techniques based on therapy or sanctions. Because of the unique role of medication, social control is primarily imposed on a physical dimension, as opposed to temporal and spatial forms. The article concludes that patients are at risk of being subjected to new forms of social control of an unclear nature without proper legal protection.

The effectiveness of an anti-stigma intervention in a basic police officer training programme: a controlled study.

BACKGROUND: Stigma and discrimination are still prominent features of the life situation of persons with mental illness, adding to the burden of the illness, causing a lowered self-esteem, quality of life and affecting possibilities of adequate housing and work. It is also a major barrier to help seeking. The deinstitutionalization of mental health services has led to a significant increase in contacts between the police and persons with mental illness. It has been argued that police officers should be provided education and training to enable them to interact adaptively and with good outcomes with people with mental illness. The present study is investigating the effectiveness of an anti-stigma intervention in a basic police officer training programme at a university in Sweden. METHODS: The study was performed as a controlled pre-post intervention study using a comparison group, and a 6-month follow-up of the intervention group. Attitudes, mental health literacy and intentional behaviour were assessed. Main analyses were made on an intention to treat basis using repeated measures ANOVA. A total of 120 participants at a basic police officer training programme were included. RESULTS: Time by group analyses showed improvements in the intervention group in overall score of attitudes and regarding the subscale Open minded and pro integration, in intentional behaviour (willingness to work with) and in 4 out of 6 items assessing mental health literacy. At the 6-month follow-up the intervention group had, as compared to baseline, improved attitudes in both overall score and in two of the subscales. Intentional behaviour had also improved in terms of an increased willingness to live or work with a person with mental health problems. Mental health literacy had improved in 3 out of 6 items. CONCLUSIONS: The anti-stigma intervention proved to be effective in changing attitudes, mental health literacy and intentional behaviour. Improvements mainly endured at the 6-month follow-up. The intervention seems promising in facilitating encounters between the police and persons with mental illness. Further studies are needed to disentangle the relative effectiveness of the components of the intervention before further implementation.

Predictors of vocational outcomes using individual placement and support for people with mental illness.

OBJECTIVE: People with disabilities find it harder to enter the labour market than people without disabilities and those with a mental illness are, in relation to people with other disabilities, employed at an essentially lower extent. Many are effectively helped by the vocational rehabilitation model Individual Placement and Support (IPS), but there are still many individuals left in undesired unemployment. This study investigates potential predictors of the vocational outcomes of a one-year follow up of IPS in the north of Sweden. PARTICIPANTS: The participants were 65 men and women, mostly younger than 30 years of age diagnosed with a mental illness (predominantly with a diagnosis of anxiety and/or depression). METHODS: Baseline data related to sociodemographic and clinical characteristics of the client, the client's own perceptions of every day living and participation, self-esteem and quality of life, as well as the quantity of employment support, were investigated using analyses of logistic regression. RESULTS: Of three identified potential predictors, only psychiatric symptoms remained significant in the multivariate logistic regression analyses. A lower level of symptoms increased the odds with 5.5 for gaining employment during one year. CONCLUSIONS: Careful investigation of how psychiatric symptoms influence clients' occupational performance is of importance. By understanding essential aspects of the relationships between the clients' individual characteristics, the rehabilitation context and the vocational outcomes, more appropriate and effective interventions may be offered to the individual client.

Why community compulsion became the solution - Reforming mental health law in Sweden.

The aim of this article is to understand how compulsory community care (CCC) has become a solution in mental health policy in so many different legal and social contexts during the last 20 years. The recent introduction of CCC in Sweden is used as a case in point, which is then contrasted against the processes in Norway, England/Wales and New York State. In Sweden, the issue of CCC was initiated following high-profile acts of violence. Contrary to several other states, there was agreement about the (lack of) evidence about its effectiveness. Rather than focusing on dangerousness, the government proposal about CCC was framed within an ideology of integrating the disabled. The new legislation allowed for a broad range of measures to control patients at the same time as it was presented as a means to protect positive rights for patients. Compared to previous legislation in Sweden, the scope of social control has remained largely the same, although the rationale has changed - from medical treatment via community treatment and rehabilitation, to reducing the risk of violence, and then shifting back to rehabilitation in the community. The Swedish approach to CCC is similar to Norway, while New York and England/Wales have followed different routes. Differences in ideology, social control and rights orientations can be understood with reference to the general welfare and care regimes that characterize the four states.

Individual placement and support - a model to get employed for people with mental illness - the first Swedish report of outcomes.

Lack of participation in the open labour market is highly prevalent for people with a mental illness across countries, and the proportion of people who get some kind of sickness benefit because of mental illness is steadily growing in Europe. Vocational rehabilitation through individual placement and support (IPS) has been shown to be effective and is evidence-based for people with severe mental illness. In Sweden, the method is used but not scientifically evaluated. The aim was to investigate vocational and nonvocational outcomes at a 1-year follow-up and the relationships between these outcomes, at two different sites in the north of Sweden. The participants were 65 men and women, mostly younger than 30 years of age and with a mental illness. Occupational situation, psychiatric symptoms, self-esteem, quality of life and psychosocial functioning were assessed. The vocational outcome during 1 year was that 25% of the participants were employed, and 14% were in education. Most of the participants moved from unemployment to work practice for a prolonged time. Participants in employment, education or work practice at follow-up showed higher satisfaction with their occupational situation than those without regular activities outside home. Among the participants in work practice, improvements in psychiatric symptoms and global functioning were identified. This attempt is the first to evaluate supported employment according to the IPS model for persons with mental illness applied in the Swedish welfare system. There is a need for a longer follow-up period to evaluate whether interventions such as further education and work practice actually will lead to real work.