Persistent Taboo Understanding Mental Illness and Stigma among Indonesian Adults Through Grounded Theory

Abstract

This study explored stigma associated with mental illness among Indonesian adults living in Indonesia. It investigated how mentally ill adults (both mentally ill patients and mental health nurses) perceive mental illness and how they respond to stigmatization on a daily basis. Given the current state of knowledge with regards to the meaning and process of stigma and mental illness among adults in Indonesia, a constructivist grounded theory was considered to be the method of choice for this study. We recruited 15 nurses and 15 patients to participate in the study; all from a psychiatric hospital in Indonesia. Data collection methods involved semi-structured interviews with the 30 participants as well as mute evidence, field notes and memos. Data analysis occurred over a period of six months. In keeping with the basic principles of a grounded theory method (Charmaz, 2006) as well as Paillé’s (1994) structure for data analysis which are congruent with Charmaz’s principles and include stages of codification, categorization, linking categories, integration, conceptualization, and theorization, 5 discrete but interrelated categories were produced: 1) treatment of mental illness; 2) violence; 3) fear; 4) constructing cursed citizens; and 5) stigmatization. Research results show that the experience of stigma for mentally ill patients in Indonesia is pervasive and impedes mental health services utilization. The stigmatization of mental illness is manifested by family members, members of the community, mental health professionals and staff, and also by governmental institutions and the media. Stigmatization is characterized by violence, fear, exclusion, isolation, rejection, blame, discrimination, and devaluation. Moreover, because of their (mis)understanding of mental illness, patients and families turn to alternative treatments provided by non-professionals (shamans, Islamic leaders, paranormals and traditional Chinese medicine); these individuals play a central role in supporting and offering solutions for someone suffering from a mental illness. In Indonesia, stigma affects mentally ill individuals at many levels. Until stigma associated with mental illness is addressed nationwide, those suffering from mental illness will continue to suffer and be prevented from accessing mental health services. As the results of this study have shown, patients seeking treatment experience violence and fear. Families and their mentally ill relatives have been expelled by their community, or have simply disappeared. Both physical and psychological abuse and humiliation have led to patients being avoided, rejected, and neglected, and thus isolated, hidden, or abandoned to the streets. There is a pressing need to combat mental illness stereotypes in Indonesia and health professionals, namely nurses, government agencies as well as the media must play a pivotal role in this process.