Exploring the Dimensions of Health-related Stigma: Insights from narratives of people with stigmatized health conditions in Indonesia

Health-related stigma is associated with a diversity of communicable and non-communicable diseases and has a resounding effect on the lives of the persons affected, their families, and the society-at-large. In order to effectively address the issue of health-related stigma, it is important to acknowledge its multidimensionality in regards to its existence in a diversity of diseases, the complex intersection of its experiences with that of other social oppressions, and the presence of positive agency among those who are stigmatized. Further, there is a wider call to bring together the knowledge and resources on stigma response from different disease-specific silos to build a unified and integrated stigma reduction approach. Through the exploration of lived experiences of people living with four stigmatized health conditions (HIV, leprosy, schizophrenia and diabetes) in Indonesia, this study aimed to answer the following research question: How can the multi-dimensionality of health-related stigma be understood across the different health conditions, and what is the possibility of a common response to address stigma across different health conditions in Indonesia? This thesis adopted a transdisciplinary research (TDR) approach based on the interactive learning and action (ILA) framework. The studies in this thesis used Socioecological model (SEM) as an overarching multi-level framework to explore the multidimensionality of stigma. The studies and their findings within this thesis have been presented in three parts: Part 1: Understanding the experience of health-related stigma Part 1 of this thesis looked into filling the evidence gap on comprehensive understanding of the experience of health-related stigma across different health conditions, and its intersection with other social inequalities and oppressive identities. First, it showed that people living with the four NCDs can also experience stigma owing to their health condition. Second, it found that stigma originates in the macro and meso levels, while manifests as personal experience in the micro level. It also found that the origin of stigma may be different across health conditions owing to the disease-specific features, the prevalent norms and stereotypes surrounding the disease, and the systemic conditioning that perpetuate and reinforce it. Third, it found that adversities related to gender, socioeconomic status religion, age, comorbidity, disability, and sexuality of participants intersected with health-related stigma in different socioecological levels. Part 2: Overcoming health-related stigma Part 2 of this thesis focused on personal agency and explored the strategies employed by positive deviants to avert stigma in their lives and improve their health-related quality of life. First, the findings uncovered the existence of problem-solving ability and personal agency among stigmatized individuals living with the four health conditions in the form of positive deviance. Second, it found that positive deviance was a determinant of physical, psychological, and social QoL of people living with stigmatized health conditions in Indonesia. Part 3: Prospects of common health-related stigma reduction response Part 3 investigated the prospects of a common response to address health-related stigma across different health conditions by investigating the cross-perspectives of individuals with different health conditions, and finally designing and implementing an intergroup training to foster understanding, collaboration and stigma reduction. First, it found that people living with stigmatized health conditions saw value in coming together for a common cause, and expressed willingness to participate in a common stigma reduction intervention. Second, the training was helpful in improving intergroup perception, willingness to collaborate, and mitigation of felt-stigma among the participants . Conclusion The prospects of collective action and agency among people living with stigmatized health conditions, combined with multifaceted initiatives from the government, civil society, and public health agencies seem to be the way forward to effectively combating health-related stigma in Indonesia, and possibly elsewhere.