Study on organisations of mental health users and carers: A mapping in Sri Lanka

<p>Mental health service user groups and advocacy movements are widely believed to <br>significantly influence changes in services and factors which affect the lives of persons with <br>mental illnesses. World Health Organization (WHO) has clearly emphasized the advantage of <br>active involvement of service users and families of people with mental illness in advocacy <br>movements1.  In Sri Lanka too, groups of Mental Health (MH) service users and their carers <br>have begun to grow in some provinces of the country within the last ten years. However, a <br>systematic information and knowledge base on capacities, issues and potential of these groups <br>is not available at national level. This mapping is therefore the first step taken to fill this gap by <br>studying the MH service user and carer’s organizations in Sri Lanka. Key objectives of this <br>study are to review strengths and weaknesses of these organizations and the impacts created <br>by these organizations in mobilizing participation of MH service users and carers in changing <br>conditions that affect them.  <br> <br>This study was conducted with 13 organizations which were selected through a telephone <br>survey of 32 organizations in 19 districts. The key criteria of selections were the period which <br>the organization was in operation. The study applied participatory methodology which included <br>brainstorming sessions and focus group discussions with MH service users and carers and <br>interview with service providers. </p> <p> <br>Study shows that prevalent feature in the formation of many MH service users and carers’ <br>forums is that main linkage to the forum initially has been through the MH service provision <br>centre (at hospital or rehabilitation centre). In this context, initial formation of these <br>organizations was effort of MH professionals or mental health related workers (such as the <br>psychiatry social workers) who provide service at particular local centre. In relevance to MH <br>national policy and it’s emphasizes on community mental health; this should be viewed as a <br>significant progress in translating the policy into practice. As a result of this linkage with MH <br>service provision centre and as initial leading involvement of MH professionals, highest <br>prevalence objectives of formation of these organizations are to build capacity of MH service <br>users and carers for improved rehabilitation care and continuous treatment. However, there is a <br>notable disparity between the nature of purposes that motivated the service users and carers to <br>join the forums and the expressed/stated objectives of the forums. Highest prevalence purpose <br>of MH service users and carers to join the organizations was to fight the stigma related and to <br>improve theirs and their families’ social integration. Study, therefore, reveal both positive <br>outcomes as well as constraints created through this prevalent and continuous linkage with MH <br>service centres and MH service providers.</p>