Contribution of Mental Health Service User Groups to Mental Health Services and Policy in Ghana : The Case of Mental Health Society of Ghana

RESUMO: Este estudo procurou documentar a perspectiva (s) dos utentes de saúde mental e das associações de prestadores de cuidados sobre a prestação, o papel e a contribuição de serviços de saúde mental da comunidade tal como foram percebidos por um número de informadores-chave, incluindo os utentes do serviço mentais e os próprios prestadores de cuidados. O caso específico da Sociedade Saúde Mental do Gana (MEHSOG) foi o foco deste estudo. O modelo foi o de um estudo de caso, utilizando discussões de grupo e entrevistas com informadores-chave como instrumentos de recolha de dados. Estas ferramentas de colheita de dados foram complementadas por observações dos participantes e pela revisão de documentos da MEHSOG e dos vários grupos de apoio da comunidade de auto-ajuda que compõem a associação nacional. O estudo revelou que os utentes dos serviços de saúde mental e seus prestadores de cuidados constituem um importante grupo de partes interessadas na prestação de serviços de saúde mental da comunidade e no desenvolvimento de políticas que tenham em conta as necessidades e os direitos das pessoas com doença mental ou epilepsia. O envolvimento da MEHSOG promove a mobilização de membros e famílias relacionadas com a doença mental de beneficiar de serviços de tratamento bem organizados com um impacto significativo na melhoria da saúde e da participação dos utentes dos serviços e seus prestadores de cuidados primários em processos de tomada de decisão da família e na comunidade processos de desenvolvimento. Os utentes dos serviços por beneficiarem de tratamento, e os prestadores de cuidados primários, por se tornarem mais livres e menos sobrecarregados com a responsabilidade de cuidar, podem passar a envolver-se mais em atividades que melhoramo seu estado, o de suas famílias e das comunidades. A advocacia dos membros da MEHSOG para conseguir que a “Mental Health Bill” se transforme numa Lei foi também um desenvolvimento significativo resultante da participação ativa dos utentes do serviço em chamar a atenção para uma nova e inclusiva legislação de saúde mental para o Gana. Entre os fatores e oportunidades que permitiram aos utentes dos serviços de saúde mental e aos prestadores de cuidados primários de pessoas com doença mental apoiar activamente a prestação de serviços de saúde mental comunitária e o desenvolvimento de políticas conta-se a contribuição da sociedade civil do Gana, particularmente o movimento da deficiência, e os esforços anteriores de ONGs em saúde mental e dos profissionais de saúde mental para ter uma nova lei em saúde mental. Observámos um certo número de desafios e barreiras que actuam de forma a limitar a influência dos utentes dos serviços de saúde mental na provisão da saúde mental comunitária e no desenvolvimento de políticas. Entre elas o estigma social contra a doença mental e pessoas com doença mental ou epilepsia e seus cuidadores primaries é um factor chave. O estigma tem alterado a percepção e as análises do público em geral, especialmente dos profissionais de saúde e das autoridades políticas afetando a priorização dos problemas de saúde mental nas políticas e programas. Outro desafio foi a deficiente infra-estrutura disponível para apoiar serviços de saúde mentais que assegurem aos utentes permanecerem em bom estado de saúde e bem-estar para serem advogados de si próprios. A recomendação do presente estudo é que os movimentos de utentes dos serviços de saúde mental são importantes e que eles precisam de ser apoiados e encorajados a desempenhar o seu papel como pessoas com experiência vivida para contribuir para a organização e prestação de serviços de saúde mental, bem como para a implementação, monitorização e avaliação de políticas e programas. ------------------------------------ ABSTRACT: This study sought to document the perspective(s) of mental health users and care-givers associations in community mental health service provision and their role and contribution as it was perceived by a number of key informants including the mental service users and care-givers themselves. The specific case of the Mental Health Society of Ghana (MEHSOG) was the focus of this study. A case study approach was used to with Focus Group Discussions and Key Informants Interviews being the data collection tools that were used. These data collection tools were complemented by participant observations and review of documents of the MEHSOG and the various community self-help peer support groups that make up the national association. The study revealed that mental health service users and their care-givers constitute an important stakeholder group in community mental health service provision and development of policies that factor in the needs and rights of persons with mental illness or epilepsy. MEHSOG’s involvement in mobilising members and education families to come forward with the relations with mental illness to benefit from treatment services were well made a significant impact in improving the health and participation of service users and their primary carers in family decision-making processes and in community development processes. Service users, on benefiting from treatment, and primary care-givers, on becoming freer and less burdened with the responsibility of care, move on to engage in secure livelihoods activities, which enhanced their status in their families and communities. The advocacy MEHSOG members undertook in getting the mental health Bill become Law was also noted as significant development that was realised as a result of active involvement of service users in calling for a new and inclusive mental health legislation for Ghana. Enabling factors and opportunities that enabled mental health service users and primary care-givers of people with mental illness to actively support community mental health service provision and policy development is with the vibrant civil society presence in Ghana, particularly the disability movement, and earlier efforts by NGOs in mental health in Ghana long-side mental health professionals to have a new law in mental health. A number of challenges were also noted which were found to limit the extent to which mental health service users can be influential in community mental health service provision and policy development. Key among them was the social stigma against mental illness and people with mental illness or epilepsy and their primary carers. Stigma has affected perceptions, analyses of the general public, especially health practitioners and policy authorities that it has affected their prioritisation of mental health issues in policies and programmes. Another challenge was the poor infrastructure available to support enhanced mental health care services that ensure mental health service users remain in a good state of health and wellbeing to advocate for themselves. The recommendation from the study is that mental health service user movements are important and need to be supported and encouraged to play their role as persons with lived experience to inform organisation and provision of mental health services as well as design and implementation, monitoring and evaluation of policies and programes.

Personal Liberty in Psychiatric Care - Towards Service User Involvement

This study explores personal liberty in psychiatric care from a service user involvement perspective. The data were collected in four phases during the period 2000-2006 in psychiatric settings in Finland. Firstly, patient satisfaction and factors associated with user involvement were studied (n = 313). Secondly, patients’ experiences of deprivation of their liberty were explored (n = 51). Thirdly, an overview on patients’ options for lodging complaints was conducted, and all complaints (n = 4645) lodged in Finland from 2000 to 2004 were examined. Fourthly, the effects of different patient education methods on inpatients’ experiences of deprivation of liberty were tested (n = 311). It emerged that patients were quite satisfied, but reported dissatisfaction in restrictions, compulsory care and information dissemination. Patients experienced restrictions on leaving the ward and on communication, confiscation of property and coercive measures as deprivation of liberty. Patients’ experienced these interventions to be negative. In Finland, the patient complaint process is complicated and not easily accessible. In general, patient complaints increased considerably in Finland during the study period. In psychiatric care the number of complaints was quite stable and complaints led more seldom to consequences. An Internet-based patient education system was equivalent with traditional education and treatment as usual in supporting personal liberty during hospital care. This dissertation provides new information about the realization of patients' rights in psychiatric care. In order to improve patients' involvement, systematic methods to increase personal liberty during care need to be developed, the procedures for patients lodging complaints should be simplified, and patients' access to information needs to be ensured using multiple methods.

Integrating service user and practitioner expertise within a web-based system for collaborative mental-health risk and safety management

Objectives: To develop a decision support system (DSS), myGRaCE, that integrates service user (SU) and practitioner expertise about mental health and associated risks of suicide, self-harm, harm to others, self-neglect, and vulnerability. The intention is to help SUs assess and manage their own mental health collaboratively with practitioners. Methods: An iterative process involving interviews, focus groups, and agile software development with 115 SUs, to elicit and implement myGRaCE requirements. Results: Findings highlight shared understanding of mental health risk between SUs and practitioners that can be integrated within a single model. However, important differences were revealed in SUs' preferred process of assessing risks and safety, which are reflected in the distinctive interface, navigation, tool functionality and language developed for myGRaCE. A challenge was how to provide flexible access without overwhelming and confusing users. Conclusion: The methods show that practitioner expertise can be reformulated in a format that simultaneously captures SU expertise, to provide a tool highly valued by SUs. A stepped process adds necessary structure to the assessment, each step with its own feedback and guidance. Practice Implications: The GRiST web-based DSS (www.egrist.org) links and integrates myGRaCE self-assessments with GRiST practitioner assessments for supporting collaborative and self-managed healthcare.

Gaining by Giving? Peer Research into Service User and Carer Perceptions of Inclusivity in Higher Education

Service users and carers (SUAC) have made significant contributions to professional training in social work courses in Higher Education (HE) over the past decade in the UK. Such participation has been championed by government, academics and SUAC groups from a range of theoretical and political perspectives. Most research into the effectiveness of SUAC involvement at HE has come from the perspectives of academics and very little SUAC-led research exists. This qualitative peer research was led by two members of the University of Worcester’s SUAC group. Findings were that SUAC perceived their involvement brought benefits to students, staff, the University and the local community. Significant personal benefits such as finding a new support network, increased self-development and greater confidence to manage their own care were identified in ways that suggested that the benefits that can flow from SUAC involvement at HE are perhaps more far-reaching than previously recognised. Barriers to inclusion were less than previously reported in the literature and the humanising effects of SUAC involvement are presented as a partial antidote to an increasingly marketised HE culture.

Care planning for aggression management in a specialist secure mental health service: user involvement

This paper describes an audit of prevention and management of violence and aggression care plans and incident reporting forms which aimed to: (i) report the compliance rate of completion of care plans; (ii) identify the extent to which patients contribute to and agree with their care plan; (iii) describe de-escalation methods documented in care plans; and (iv) ascertain the extent to which the de-escalation methods described in the care plan are recorded as having been attempted in the event of an incident. Care plans and incident report forms were examined for all patients in men's and women's mental health care pathways who were involved in aggressive incidents between May and October 2012. In total, 539 incidents were examined, involving 147 patients and 121 care plans. There was no care plan in place at the time of 151 incidents giving a compliance rate of 72%. It was documented that 40% of patients had contributed to their care plans. Thematic analysis of de-escalation methods documented in the care plans revealed five de-escalation themes: staff interventions, interactions, space/quiet, activities and patient strategies/skills. A sixth category, coercive strategies, was also documented. Evidence of adherence to de-escalation elements of the care plan was documented in 58% of incidents. The reasons for the low compliance rate and very low documentation of patient involvement need further investigation. The inclusion of coercive strategies within de-escalation documentation suggests that some staff fundamentally misunderstand de-escalation.

Contributo para a validação da versão portuguesa do instrumento de avaliação VOICE (service users perceptions of impatient care, Views on Inpatient Care)

RESUMO: Nos últimos anos assistiu-se a um reposicionamento das pessoas portadoras de doença mental na sociedade, no sentido de viverem em pleno os seus direitos, sem restrições. Esta tendência acompanhou as transformações que se têm vivido na forma como os utentes dos serviços de saúde interagem com os mesmos e com os profissionais de saúde, de forma a permitir uma maior autonomização e responsabilização no que concerne ao tratamento da sua doença, a relação que estabelecem com o seu médico, e a participação na avaliação e monitorização da qualidade dos serviços. Mais recentemente, também no mundo científico, esta afirmação se fez sentir, com o surgimento de investigação liderada por utentes, no sentido de estudar de forma adequada questões que partem do seu ponto de vista, e que possibilitem a produção de conhecimento significativa no contexto das suas experiências. Com o presente trabalho pretende-se contribuir para a validação da versão portuguesa do VOICE (Service Users’ Perceptions of Inpatient Care, Views on Inpatient Care) (Evans et al., 2012), instrumento para a avaliação dos serviços de internamento de agudos em psiquiatria, construído a partir de um investigação liderado por utentes e partindo das suas perspectiva. O VOICE é constituído por 19 questões, agrupadas em sete domínios: admissão; cuidados e tratamento; medicação; equipa de técnicos do internamento; terapia e atividades; ambiente e diferenças. O presente estudo envolveu uma amostra de 85 utentes de um serviço de internamento de agudos de uma instituição psiquiátrica do Norte de Portugal. A versão portuguesa do VOICE apresentou boa aceitação por parte dos utentes e boas características psicométricas - a consistência interna foi alta (α = 0,87) e todos, exceto um item (item 6), apresentam elevadas correlações item-total (variando de 0,18 - item 6 a 0,71 - item 11; M = 0,54, DP = 0,15), sugerindo ser um instrumento útil na avaliação dos serviços de internamento de agudos. No futuro torna-se necessário alargar o estudo a outros contextos de internamento e envolvendo amostras mais alargadas.-------------- ABSTRACT: In recent years there has been a gradual process to help people with the experience of mental illness regaining their full rights. Following the advances in the understanding of mental health problems, and the use of medication to help patients overcome symptoms, service-users have become more autonomous and responsible in the way they deal with health professionals, and are now called to participate in assessing and monitoring mental health services and policies. In the context of these transformations we have assisted to the emergence of research led by service-users (in this case of psychiatric and mental health services) in order to emphasize their point of view, and to enable the production of significant knowledge resulting from their experiences, and perceptions. The present study aims to contribute to the dissemination of service-user led research, based on the adaptation and validation of the Portuguese version of the VOICE - Service Users' Perceptions Questionnaire, Views on Inpatient Care. (Evans et al., 2012). The VOICE is composed of 19 questions, grouped in seven domains: admissions, care and treatment, medication, team of technicians during hospitalization, therapy and activities, environment and diversity. The present study involved a sample of 85 inpatient of a psychiatric institution in Northern Portugal. The Portuguese version of the VOICE showed good psychometric properties and was well accepted by patients [high internal consistency (α = 0,87); and high correlation of each item, except item 6, with the total score (ranging from 0.18 on item 6 to 0.71 on item 11; average=0,54; SD=0,15), suggesting it to be a useful tool for assessing inpatient services. In the future there is a need to extend the study to other contexts and include larger samples.

Lite4Life (Tier 2 adult weight management service)

This service Aims: To provide a multi-component weight management service that supports sustainable behaviour change and weight loss in adults 16 years and over with a BMI 28. To enable patients to develop the necessary personal attributes for their own long term weight management and to understand the impact of their weight on their health and co-morbidities. Objectives: To provide an evidence based, multi-component tier 2 weight management service that improves patients knowledge and skills for effective and sustainable weight loss helps patients identify their own facilitators for positive behaviour change and to address underlying barriers to long-term behaviour changeincreases patients self-efficacy and confidence in their ability to address their weight To be an integral part of the tiered approach to weight management services for the population of Stockton. To ensure equitable service provision across Stockton-on-Tees. To provide intensive group based service, one-to-one support and maintenance support. To support the service user to develop and review a personalised goal setting plan phase 2 and at discharge after phase 2. To ensure a smooth transition from the service (tier2) to tier 1 services to ensure continuity of care for service users.Recruit referrals using a variety of and appropriate methods. To establish a single point of contact for referrals into the service.Continually promote the service across a range of mediums and liaise and work in partnership with key interdependencies (refer to 2.4) To establish a robust database and data collection system in line with information governance. To ensure the access criteria, care pathway and referral process is clearly understood by all health care professionals and those who may refer into the service. To establish close links with, and signpost and/or enable service users to access suitable services where patient needs indicate this. This may include access to Tees Time to Talk (IAPT) for psychological therapies; Specialist Weight Management Service; physical activity programmes; Tier 1 services; and primary care. To provide the necessary venues, equipment and assets needed to deliver the programme, ensuring due regard is given to the quality and safety of all materials used. To collect and provide data in quarterly reports to the Commissioner to allow for continued monitoring and evaluation of the service in line with the Standard Evaluation Framework (available at www.noo.org.uk/core/SEF) and as specified by the Commissioner.

Implementing A vision for change: moving towards a modern, quality and responsive mental health service. Carlow / Kilkenny / South Tipperary.

The key element of the HSE South’s Programme is to enhance and develop community mental health services in Carlow, Kilkenny and South Tipperary, to enable the service user to remain in the community to the greatest extent possible. HSE South has prioritised the implementation of the change programme and has allocated more than €20m capital funding and over €1.75m revenue funding to support this comprehensive development programme. Speaking at the briefings Mr. Pat Healy, Regional Director of Operations, HSE South said, “When this plan is delivered, clients will have access to the highest standards of services in all three counties, which should significantly improve these clients’ treatment programmes and quality of life. The National Service Users Executive are supporting the change programme, which is of immense importance to HSE South. The programme heralds the enhancement and development of community mental health services, the closure of old long stay institutions, the separation of North and South Tipperary acute inpatient mental health services and development of appropriate acute inpatient services, for the extended catchment area, in line with the national strategy for mental health “A Vision for Change”. The programme also acts on recommendations of the Mental Health Commission.”This resource was contributed by The National Documentation Centre on Drug Use.

Service Description Creation Empowerment to Mobile End Users

Increasing usage of Web Services has been result of efforts to automate Web Services discovery and interoperability. The Semantic Web Service descriptions create basis for automatic Web Service information management tasks such as discovery and interoperability. The discussion of opportunities enabled by service descriptions have arisen in recent years. The end user has been considered only as a consumer of services and information sharing occurred from one service provider to public in service distribution. The social networking has changed the nature of services. The end user cannot be seen anymore only as service consumer, because by enabling semantically rich environment and right tools, the end user will be in the future the producer of services. This study investigates the ways to provide for end users the empowerment to create service descriptions on mobile device. Special focus is given to the changed role of the end user in service creation. In addition, the Web Services technologies are presented as well as different Semantic Web Service description approaches are compared. The main focus in the study is to investigate tools and techniques to enable service description creation and semantic information management on mobile device.