Meaningful Engagement of Persons Affected by Leprosy in Research: An Exploration of Its Interpretation, Barriers, and Opportunities.

Despite the growing interest in public and patient involvement in research, best practices in the leprosy context have yet to be explored. This mixed-method study aimed to explore the interpretation, barriers and opportunities of meaningful engagement of persons affected by leprosy in research through: (i) an exploratory phase consisting of key informant interviews with experts in public and patient involvement (n = 2) and experts-by-experience (i.e., persons affected by leprosy; n = 4), and (ii) an in-depth phase among leprosy researchers consisting of an online survey (n = 21) and key informant interviews (n = 7). Qualitative data were thematically analyzed. Basic descriptive statistics were used to summarize the survey data. Key informant interviewees unanimously agreed to the importance of engagement in research. Survey results indicated that the level of engagement differed across research stages. Identified barriers included a lack of skills for or awareness of engagement among both experts-by-experience and researchers, stigma and limited time and resources. Opportunities included capacity strengthening, creating a shared understanding, building rapport, and establishing a safe environment. In conclusion, this exploratory study emphasized the importance of engagement of experts-by-experience in leprosy research and identified ways forward that include, but are not limited to, the acknowledgement of its value and creating a shared understanding.

How do Positive Deviants Overcome Health-Related Stigma? An Exploration of Development of Positive Deviance Among People With Stigmatized Health Conditions in Indonesia.

A constructivist grounded theory approach was used to understand how some people living with stigmatized health conditions develop positive deviance to overcome stigma. We examined interviews from 13 identified positive deviants living with four different stigmatized health conditions (HIV, leprosy, schizophrenia, and diabetes) in Indonesia. Positive deviance develops in the form of psychological empowerment through improvement of self-belief and perception (intrapersonal component), development of understanding and skill to exert control in life (interactional component), and self-discovery of successful behaviors and strategies to avert stigma (behavioral component). Positive deviants, after being empowered, start empowering others affected by sharing their knowledge and fostering social awareness and acceptance. The findings revealed the presence of problem-solving ability and agency within the community of stigmatized individuals in Indonesia and warrant researchers to partner with the community to expedite the diffusion of transferable positive deviant strategies within and outside the communities.

Assessing the prospect of a common health-related stigma reduction response: Cross-perspectives of people living with stigmatised health conditions in Indonesia.

ABSTRACTThis study explored the possibility of a common health-related stigma reduction intervention among people living with HIV, leprosy, schizophrenia and diabetes in Indonesia by assessing their perspectives towards others with the same (within group) and different health conditions (across groups), and willingness to participate in such a program. This mixed-methods study was conducted in West Java, Indonesia between March and June 2018. Eighty participants completed a survey with social distance scale (SDS), while 12 focus group discussion were conducted. Participants with HIV, leprosy and diabetes reported lower within-group SDS scores (4.14 ± 3.65; 4.25 ± 3.95; 7.23 ± 5.31, respectively) while those with schizophrenia reported the highest within-group SDS score (7.76 ± 4.63). Participants with diabetes reported a twofold higher across-group SDS score towards people with the other three health conditions (p < 0.05). The qualitative findings showed that the perception of participants towards one another was shaped by knowledge, understanding and relatedness to the experience of living with health-related stigma. Overall, participants supported the idea of a common stigma reduction intervention for different health conditions, but recommended step-wise implementation of such interventions. Accordingly, this study recommends piloting a common stigma reduction intervention with special focus on fostering understanding, awareness and empathy between people living with different health conditions.

Intersectionality and health-related stigma: insights from experiences of people living with stigmatized health conditions in Indonesia.

BACKGROUND: Health-related stigma is a complex phenomenon, the experience of which intersects with those of other adversities arising from a diversity of social inequalities and oppressive identities like gender, sexuality, and poverty - a concept called "intersectionality". Understanding this intersectionality between health-related stigma and other forms of social marginalization can provide a fuller and more comprehensive picture of stigma associated with health conditions. The main objective of this paper is to build upon the concept of intersectionality in health-related stigma by exploring the convergence of experiences of stigma and other adversities across the intersections of health and other forms of social oppressions among people living with stigmatized health conditions in Indonesia. METHODS: This qualitative study interviewed 40 people affected by either of four stigmatizing health conditions (HIV, leprosy, schizophrenia, and diabetes) in Jakarta and West Java, Indonesia between March and June 2018. Data was analyzed thematically using an integrative inductive-deductive framework approach. RESULTS: The main intersectional inequalities identified by the participants were gender and socioeconomic status (n = 21), followed by religion (n = 13), age (n = 11), co-morbidity (n = 9), disability (n = 6), and sexuality (n = 4). Based on these inequalities/identities, the participants reported of experiencing oppression because of prevailing social norms, systems, and policies (macro-level), exclusion and discrimination from societal actors (meso-level), and self-shame and stigma (micro-level). While religion and age posed adversities that negatively affected participants in macro and meso levels, they helped mitigate the negative experiences of stigma in micro level by improving self-acceptance and self-confidence. CONCLUSION: This study uncovered how the experience of health-related stigma intersects with other oppressions originating from the various social inequalities in an individual's life. The findings highlight the importance of acknowledging and understanding the multi-dimensional aspect of lives of people living with stigmatized health conditions, and warrant integrated multi-level and cross-cutting stigma reduction interventions to address the intersectional oppressions they experience.