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      Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: a cross-country qualitative study

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          Abstract

          Aims.

          The aims of this paper are to: (i) explore the experiences of involvement of mental health service users, their caregivers, mental health centre heads and policy makers in mental health system strengthening in three low- and middle-income countries (LMICs) (Ethiopia, Nepal and Nigeria); (ii) analyse the potential benefits and barriers of such involvement; and (iii) identify strategies required to achieve greater service user and caregiver participation.

          Methods.

          A cross-country qualitative study was conducted, interviewing 83 stakeholders of mental health services.

          Results.

          Our analysis showed that service user and caregiver involvement in the health system strengthening process was an alien concept for most participants. They reported very limited access to direct participation. Stigma and poverty were described as the main barriers for involvement. Several strategies were identified by participants to overcome existing hurdles to facilitate service user and caregiver involvement in the mental health system strengthening process, such as support to access treatment, mental health promotion and empowerment of service users. This study suggests that capacity building for service users, and strengthening of user groups would equip them to contribute meaningfully to policy development from informed perspectives.

          Conclusion.

          Involvement of service users and their caregivers in mental health decision-making is still in its infancy in LMICs. Effective strategies are required to overcome existing barriers, for example making funding more widely available for Ph.D. studies in participatory research with service users and caregivers to develop, implement and evaluate approaches to involvement that are locally and culturally acceptable in LMICs.

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          Most cited references28

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          Association between public views of mental illness and self-stigma among individuals with mental illness in 14 European countries.

          Little is known about how the views of the public are related to self-stigma among people with mental health problems. Despite increasing activity aimed at reducing mental illness stigma, there is little evidence to guide and inform specific anti-stigma campaign development and messages to be used in mass campaigns. A better understanding of the association between public knowledge, attitudes and behaviours and the internalization of stigma among people with mental health problems is needed. This study links two large, international datasets to explore the association between public stigma in 14 European countries (Eurobarometer survey) and individual reports of self-stigma, perceived discrimination and empowerment among persons with mental illness (n=1835) residing in those countries [the Global Alliance of Mental Illness Advocacy Networks (GAMIAN) study]. Individuals with mental illness living in countries with less stigmatizing attitudes, higher rates of help-seeking and treatment utilization and better perceived access to information had lower rates of self-stigma and perceived discrimination and those living in countries where the public felt more comfortable talking to people with mental illness had less self-stigma and felt more empowered. Targeting the general public through mass anti-stigma interventions may lead to a virtuous cycle by disrupting the negative feedback engendered by public stigma, thereby reducing self-stigma among people with mental health problems. A combined approach involving knowledge, attitudes and behaviour is needed; mass interventions that facilitate disclosure and positive social contact may be the most effective. Improving availability of information about mental health issues and facilitating access to care and help-seeking also show promise with regard to stigma.
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            Using thematic analysis in psychology

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              WPA guidance on steps, obstacles and mistakes to avoid in the implementation of community mental health care.

              This paper provides guidance on the steps, obstacles and mistakes to avoid in the implementation of community mental health care. The document is intended to be of practical use and interest to psychiatrists worldwide regarding the development of community mental health care for adults with mental illness. The main recommendations are presented in relation to: the need for coordinated policies, plans and programmes, the requirement to scale up services for whole populations, the importance of promoting community awareness about mental illness to increase levels of help-seeking, the need to establish effective financial and budgetary provisions to directly support services provided in the community. The paper concludes by setting out a series of lessons learned from the accumulated practice of community mental health care to date worldwide, with a particular focus on the social and governmental measures that are required at the national level, the key steps to take in the organization of the local mental health system, lessons learned by professionals and practitioners, and how to most effectively harness the experience of users, families, and other advocates.
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                Author and article information

                Journal
                Epidemiol Psychiatr Sci
                Epidemiol Psychiatr Sci
                EPS
                Epidemiology and Psychiatric Sciences
                Cambridge University Press (Cambridge, UK )
                2045-7960
                2045-7979
                February 2018
                08 November 2017
                : 27
                : 1
                : 29-39
                Affiliations
                [1 ]Faculty of Life Sciences and Medicine, Academic Rheumatology, King's College London , London, UK
                [2 ]Department of Psychiatry, Addis Ababa University , College of Health Sciences, School of Medicine, Addis Ababa, Ethiopia
                [3 ]Transcultural Psychosocial Organization (TPO) Nepal Baluwatar , Kathmandu, GPO Box 8974, Nepal
                [4 ]Department of Psychiatry, College of Medicine, University of Ibadan, University College Hospital , PMB 5116, Nigeria
                [5 ]Personal Social Services Research Unit, London School of Economics and Political Science Centre, London, UK
                [6 ]Centre for Global Mental Health, Institute of Psychiatry, Psychology and Neuroscience, King's College London , London, UK
                Author notes
                [* ]Address for correspondence: H. Lempp, Faculty of Life Sciences and Medicine, Academic Rheumatology, King's College London , London, UK. (Email: heidi.lempp@ 123456kcl.ac.uk )
                Article
                S2045796017000634 00063
                10.1017/S2045796017000634
                6998885
                29113598
                5b0d2106-e5f0-405a-ae56-db1e03a2932f
                © Cambridge University Press 2017

                This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 23 July 2017
                : 24 September 2017
                Page count
                Tables: 2, References: 51, Pages: 11
                Categories
                Special Article

                health system strengthening,low- and middle-income countries,mental health gap,mental health system,qualitative study,service user and caregiver involvement

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