Study on Organizations of Mental Health Service Users and Carers A Mapping in Sri Lanka

Mental health service user groups and advocacy movements are widely believed to significantly influence changes in services and factors which affect the lives of persons with mental illnesses. World Health Organization (WHO) has clearly emphasized the advantage of active involvement of service users and families of people with mental illness in advocacy movements.
In Sri Lanka too, groups of Mental Health (MH) service users and their carers have begun to grow in some provinces of the country within the last ten years. However, a systematic information and knowledge base on capacities, issues and potential of these groups is not available at national level. This mapping is therefore the first step taken to fill this gap by studying the MH service user and carer’s organizations in Sri Lanka. Key objectives of this study are to review strengths and weaknesses of these organizations and the impacts created by these organizations in mobilizing participation of MH service users and carers in changing conditions that affect them.

This study was conducted with 13 organizations which were selected through a telephone survey of 32 organizations in 19 districts. The key criteria of selections were the period which the organization was in operation. The study applied participatory methodology which included brainstorming sessions and focus group discussions with MH service users and carers and interview with service providers.

Study shows that prevalent feature in the formation of many MH service users and carers’ forums is that main linkage to the forum initially has been through the MH service provision centre (at hospital or rehabilitation centre). In this context, initial formation of these organizations was effort of MH professionals or mental health related workers (such as the psychiatry social workers) who provide service at particular local centre. In relevance to MH national policy and it’s emphasizes on community mental health; this should be viewed as a significant progress in translating the policy into practice. As a result of this linkage with MH service provision centre and as initial leading involvement of MH professionals, highest prevalence objectives of formation of these organizations are to build capacity of MH service users and carers for improved rehabilitation care and continuous treatment. However, there is a notable disparity between the nature of purposes that motivated the service users and carers to join the forums and the expressed/stated objectives of the forums. Highest prevalence purpose of MH service users and carers to join the organizations was to fight the stigma related and to improve theirs and their families’ social integration. Study, therefore, reveal both positive outcomes as well as constraints created through this prevalent and continuous linkage with MH service centres and MH service providers.

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