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Exploring the Dimensions of Health-related Stigma Rai, Sarju Sing
2021
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Rai, S. S. (2021). Exploring the Dimensions of Health-related Stigma: Insights from narratives of people with stigmatized health conditions in Indonesia. Ridderprint.
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Insights from narratives of people with stigmatized health conditions in Indonesia
SARJU SING RAI
Colofon
M
Members of the thesis committee:
prof.dr. Jacqueline Broerse prof.dr. Maria Teresa Lluch Canut prof.dr. Pamela Wright
prof.dr. Geert van Hove dr. Wim van Brakel
Dit proefschrift is tot stand gekomen in het kader van het Erasmus Mundus program of the European Union for International Doctorate in Transdisciplinary Global Health Solutions (Specific Grant Agreement 2017-532541), onder toezicht van een samenwerkingsverband bestaande uit: Instituto de Salud Global de Barcelona (ISGlobal) van de Universitat de Barcelona, Spanje; en Athena Instituut, Vrije Universiteit Amsterdam, Nederland;
This thesis has been written within the framework of the Erasmus Mundus program of the European Union for International Doctorate in Transdisciplinary Global Health Solutions (Specific Grant Agreement 2017-532541), under the joint supervision of the following partners: Instituto de Salud Global de Barcelona (ISGlobal), Universitat de Barcelona, Spain; and Athena Institute, VU University, Amsterdam The Netherlands.
ISBN: 978-94-6416-450-3
©2020 Sarju Sing Rai
All rights reserved. No part of this work may be reproduced by print, photocopy or
other means without any written permission of the author
VRIJE UNIVERSITEIT
Exploring the Dimensions of Health-related Stigma:
Insights from narratives of people with stigmatized health conditions in Indonesia
ACADEMISCH PROEFSCHRIFT
ter verkrijging van de graad Doctor of Philosophy
aan de Vrije Universiteit Amsterdam en de Universitat de Barcelona, op gezag van de rectores magnifici
prof.dr. V. Subramaniam en prof.dr. J.E. García, in het openbaar te verdedigen
ten overstaan van de promotiecommissie van de Faculteit der Bètawetenschappen op vrijdag 12 maart 2021 om 13.45 uur in de online bijeenkomst van de universiteit,
De Boelelaan 1105
door
Sarju Sing Rai
geboren te Kathmandu, Nepal
promotoren: prof.dr. M.B.M. Zweekhorst
prof.dr. D. Naniche
copromotoren: dr. E.V. Syurina
dr. R.M.H. Peters
Cover Image
@pawel_czerwinski
Ridderprint | www.ridderprint.nl
Translation Bahasa Indonesia Fauzan Abdi
The study was completed within the Erasmus Mundus Joint Doctorate Program of the European Union for International Doctorate in Transdisciplinary Global Health Solutions; a consortium consisting of:
Institute of Tropical Medicine, Antwerp, Belgium
VU University Amsterdam, Amsterdam, The Netherlands
University of Barcelona, Barcelona, Spain
Universiteit van Amsterdam, Amsterdam, The Netherlands
• Academisch Medisch Centrum bij de Universiteit van Amsterdam, Amsterdam, The Netherlands
Université de Bordeaux, Bordeaux, France
Funding was from the Erasmus Mundus Joint Doctorate Program of the European Union (Specific Grant Agreement 2017-532541) and Leprosy Research Initiative (LRI) project number 706.18.20.LRI.
Table of contents
Chapter 1 Introduction 2
Chapter 2 Theoretical concepts 14
Chapter 3 Research design 28
Part 1: Understanding the experience of health-related stigma Chapter 4 Non-communicable diseases-related stigma – a mixed-methods
systematic review
58
Chapter 5 Qualitative exploration of experiences and consequences of health-related stigma among Indonesians living with HIV, leprosy, schizophrenia, and diabetes
102
Chapter 6 Intersectionality and health-related stigma: Insights from experiences of people with stigmatized health conditions in Indonesia
126
Part 2: Overcoming health-related stigma
Chapter 7 How do positive deviants overcome health-related stigma? The development of positive deviance among people with
stigmatized health conditions in Indonesia
166
Chapter 8 The effect of positive deviance and perceived peer-group social distance on the health-related quality of life of people living with stigmatized health conditions in Indonesia
194
Part 3: Prospects of common health-related stigma reduction response Chapter 9 Assessing the prospect of a common health-related stigma
reduction response: cross-perspectives of people living with stigmatized health conditions in Indonesia
226
Chapter 10 Intergroup training among people living with HIV, leprosy and schizophrenia: Working towards a common health-related stigma reduction approach
254
Discussion and conclusion
Chapter 11 Discussion and conclusion 286
Appendices Summary Ringkasan
Acknowledgments About the author
324 328 334 342 346
ǀŝŝŝ
ACCOUNT
Chapters 4 to 10 are based on articles that are published or under review for publication in international peer-reviewed journals.
Chapter 4:
Rai, S. S., Syurina, E. V., Peters, R. M., Putri, A. I., & Zweekhorst, M. (2020). Non-Communicable Diseases-Related Stigma: A Mixed-Methods Systematic Review. International Journal of Environmental Research and Public Health, 17(18), 6657. doi:10.3390/ijerph17186657.
Chapter 5:
Rai, S. S., Irwanto, I., Peters, R. M., Syurina, E. V., Putri, A. I., Mikhakhanova, A., Naniche, D., &
Zweekhorst, M. B. (2020). Qualitative Exploration of Experiences and Consequences of Health-related Stigma among Indonesians with HIV, Leprosy, Schizophrenia and Diabetes. Kesmas: National Public Health Journal, 15(1), 7-16. doi:10.21109/kesmas.v15i1.3306.
Chapter 6:
Rai, S. S., Peters, R. M., Syurina, E. V., Irwanto, I., Naniche, D., & Zweekhorst, M. (2020). Intersectionality and health-related stigma: Insights from experiences of people with stigmatized health conditions in Indonesia. International Journal of Equity in Health, 19(1), 1-15. doi: 10.1186/s12939-020-01318-w Chapter 7:
Rai, S. S., Syurina, E. V., Peters, R. M., Irwanto, I., & Zweekhorst, M. (In Revision). How do positive deviants overcome health-related stigma? The development of positive deviance among people with stigmatized health conditions in Indonesia. Qualitative Health Research.
Chapter 8:
Rai, S. S., Peters, R. M., Syurina, E. V., Irwanto, I., Zweekhorst, M., & Naniche, D. (Under Review). The effect of positive deviance and perceived peer-group social distance on the health-related quality of life of people living with stigmatized health conditions in Indonesia. BMC Public Health.
Chapter 9:
Rai, S. S., Syurina, E. V., Peters, R. M., Irwanto, I., Naniche, D., & Zweekhorst, M. (2020). Assessing the prospect of a common health-related stigma reduction response: cross-perspectives of people living with stigmatized health conditions in Indonesia. Global Public Health, 1-14.
doi: 10.1080/17441692.2020.1850834 Chapter 10:
Rai, S. S., Peters, R. M., Syurina, E. V., Naniche, D., & Zweekhorst, M., Irwanto, I. (Under Review).
Intergroup training among people living with HIV, leprosy and schizophrenia: Working towards a common health-related stigma reduction approach. Health and Social Care in the Community.
“If you change the way you look at things,
the things you look at change.”
- Wayne Dyer
CHAPTER 1:
INTRODUCTION
ϭ
Ϯ
CHAPTER 1: INTRODUCTION
From ensuring the availability of essential medicines in rural Nepal; to ascertaining access to timely medical and psychosocial care for survivors of rape and sexual abuse in Uganda – my work, as a pharmacist and a global health professional has always focused on bridging the gaps that exist in the health systems and improving access to health services. During the seven plus years of working in this field, I came to the realization that there was one significant obstacle that disrupted the connection between patients and health services. It discouraged them from accessing essential healthcare services and hampered the treatment and management of their disease.
This persistent obstacle that was commonly shared across a variety of health conditions was - “stigma”.
I witnessed how people with HIV and leprosy in Nepal feared coming to health facilities because of stigma – which further deteriorated their health and worsened the fear and shame they felt because of their disease. I also understood how survivors of sexual abuse in Uganda delayed seeking post-exposure prophylaxis and emergency contraception that could prevent HIV and pregnancy if taken within 72 hours. This was because of shame, and fear of ostracization and revictimization among the survivors and their family members. I also saw how such experiences of stigma disproportionately affected marginalized and disenfranchised people – those who were poor, women, and ethnic and sexual minorities. These issues of stigma traversed through continents, cultures, health conditions, and the lives of people from the mountains of Nepal to the tropical plains of Uganda.
However, it was not only the negatives I observed. I also witnessed a different side of a person’s life with stigma. I saw some people who flourished and thrived despite living with stigmatized health conditions. There were people who managed to overcome such stigma in their lives, and have positive experiences despite the odds against them. This made me realize how stigma is complex and multifaceted, and
ϯ
treating it as a singular stand-alone issue will not help address its problem wholly and effectively.
These first-hand experiences and observations led me to a path in which I explored the nuances and dimensions of stigma across different health conditions, which is depicted in this Thesis. This thesis uses a multi-dimensional lens to explore if the issue of stigma that is shared across different health conditions and social contexts, can also have a common solution. Ultimately through this thesis, I seek to advance knowledge and understanding on the multi-dimensional nature of stigma, explore the prospects of addressing stigma across different health conditions with a common integrated solution, and offer recommendations for future research strategies.
1.1 Problem statement
Health-related stigma is an important area of research in the field of global health (Stangl et al., 2019; van Brakel et al., 2006). It is associated with a diversity of diseases including the latest pandemic of Corona virus (Ren et al., 2020), other infectious diseases like Ebola (Karamouzian et al., 2015), HIV (Bogart et al., 2008), leprosy (Kazeem et al., 2011); mental illnesses like schizophrenia (González-Torres et al., 2007) and bipolar disorder (Hwake et al., 2013); and non-communicable diseases like diabetes (Liu et al., 2017) and cancer (Knapp et al., 2014). Stigma associated with these variety of diseases have a resounding effect on not only the effective management and control of these diseases, but also on the lives of the persons affected, their families, and the society-at-large (Stangl et al., 2019; van Brakel et al., 2006).
Much of the studies that have been conducted on health-related stigma focus on a singular disease or diseases with similar features (eg: mental illnesses) (Bos, Pryor, Reeder, & Stutterheim, 2013; Corrigan, Larson, & Kuwabara, 2010; Link & Phelan, 2001; Parker & Aggleton, 2003; Rao, 2010; Scambler, 2004; Stangl et al., 2019;
Thornicroft, 2016; Weiss et al., 2006). Further, these studies have focused primarily
on the negative effects of stigma while treating it as a single-dimensional and stand-
alone adversity in an individual’s life (Bos, Pryor, Reeder, & Stutterheim, 2013;
ϰ
Corrigan, Larson, & Kuwabara, 2010; Link & Phelan, 2001; Parker & Aggleton, 2003;
Rao, 2010; Scambler, 2004; Stangl et al., 2019; Thornicroft, 2011; Weiss et al., 2006).
However, it is also important to acknowledge the multidimensionality of health- related stigma in regards to its existence in a diversity of diseases (Pescosolido et al., 2013; Stangl et al., 2019), the complex intersection of its experiences with that of other social oppressions (Turan et al., 2019), and the presence of positive agency among those who are stigmatized (Shih, 2004). While focusing on the conventional singular dimensions of health-related stigma may help in understanding and addressing specific components of stigma associated with health conditions, overall, they are unable to provide the true and full picture of health-related stigma and its multi-dimensional nature (Stangl et al., 2019).
Stigma researchers have called on efforts to better understand such multi- dimensionality of health-related stigma, which may hold promise in discovering more effective and sustainable ways to address it (Birbeck, 2019; Rao, 2019; Stangl et al., 2019). This thesis seeks to fill such existing gaps on comprehensive understanding of the dimensions of health-related stigma.
1.2 Multi-dimensionality of health-related stigma
This section presents the three aspects of multi-dimensionality of stigma, which this thesis aims to explore. The first aspect highlights the nature of stigma across multiple health conditions. The second discusses how the experience of health-related stigma intersects with other social inequalities and oppressions, and the third aspect provides argument on how some people manage to overcome stigma and have positive experiences.
1.2.1 Health-related stigma across different health conditions
Studies on health-related stigma have historically and conventionally focused on infectious diseases. Diseases like leprosy and HIV are considered archetype of health conditions that are stigmatized (Rafferty, 2005; Weiss, 2006). The stigma in case of such infectious conditions originate from not only the fear of transmission of the disease, but also other various socio-cultural factors. Rafferty (2005) and Rao (2010)
ϱ
found that leprosy-related stigma also originated from religious and cultural beliefs like “karma”, “sin/bad deeds”, “curse/witchcraft” etc., while, the origins of HIV-related stigma was found to be conflated with socially deviant positioning of an individual –
“adultery”, “sex work”, “drug use”, and “homosexuality” (Culbert, 2015; Holzemer, 2009). Mental illness like schizophrenia and bipolar disorder are the other commonly stigmatized group of health conditions, which primarily emanate from the stereotype that people with mental illness are “aggressive” or “crazy” and that it “runs in the family”, which leads the people and systems to devalue and denigrate them (Livingston, 2010; Thronicroft, 2016). Emerging evidence suggest that people living with non-communicable diseases (NCDs) like diabetes, cancers, chronic respiratory diseases etc, may also experience stigma and discrimination because of their health condition. The origin of stigma in case of many of these NCDs are found to be associated with “judgment”, “blame”, and “shame” depending on the disease specific features (Berger, Kapella, & Larson, 2011; Browne, Ventura, Mosely, &
Speight, 2013; Cataldo & Brodsky, 2013; Nyblade, Stockton, Travasso, & Krishnan, 2017; Sarfo et al., 2017). For example, people with lung cancer are judged and blamed for their smoking habit (Chappel et al. 2004), while those with diabetes are blamed and shamed for their dietary habits (Browne et al. 2013).
While the concept and origin of stigma seem to vary from one disease to another,
studies have noted that experiences of stigma in terms of isolation, discrimination
and restrictions from social participation of the affected persons may be the same in
case of all health-related stigma (Bos, 2005; Rao, 2010). Many people living with HIV,
leprosy, schizophrenia, cancers, and diabetes are known to encounter similar stigma-
related manifestations like avoidance and isolation (Berger et al., 2011; Browne et al.,
2013; Nishio & Chujo, 2017), exclusion from social participation (Browne, Ventura,
Mosely, & Speight, 2014; Meacham, Orem, Nakigudde, Zujewski, & Rao, 2016),
unfair and unjust treatment in social, education, employment, and healthcare settings
(Berger et al., 2011; Browne et al., 2013; Dyer, 2010; Gupta et al., 2015; Stergiou-
Kita, Pritlove, & Kirsh, 2016), feelings of shame and guilt for having the disease (Dyer,
2010; Halding, Heggdal, & Wahl, 2011; Nishio & Chujo, 2017; Nyblade et al., 2017),
ϲ
and fear of discrimination and ostracization (Gupta et al., 2015; Suwankhong &
Liamputtong, 2016; Trusson & Pilnick, 2017).
Stigma is thus found to be both prevalent and persistent across a diversity of health conditions that differ in etiology, presentation, duration, and treatment. In such a context, understanding both the similarities and differences that exist in the stigma origins, experiences, and their consequences can hold key to addressing stigma related to these health conditions. In case of the infectious conditions like leprosy and HIV, addressing stigma is key to not only the proper management of these diseases and improving the quality of life of the persons affected, but also the control and elimination of these diseases. While in cases of non-communicable diseases it can have major implications in the treatment and recovery from treatable conditions like schizophrenia, or proper and optimal long-term management and care of chronic conditions like diabetes throughout the lives of the persons affected. Overall, addressing health-related stigma across the different health conditions can not only improve public health efforts to decrease the burden of diseases, but also improve the lives of persons affected, their families, and benefit the society and the nations by reengaging and reintegrating persons affected into the society and workforce.
1.2.2 Intersection of health-related stigma and other social oppressions
Studies have found that health-related stigma does not exist in isolation, but actually intersects with other forms of social marginalization and oppression (eg: gender, class, caste, age, race, ethnicity, socioeconomic status, sexuality/sexual orientation etc.) to create a compounding experience of stigma which negatively impacts those affected (Cain et al., 2001; Chambers et al., 2015; Crenshaw, 2002; Li et al., 2009).
Researchers have found linkages of stigma associated with health conditions to other forms of social oppression and inequities. Terms such as “double stigma” (Daftary, 2012; Kowalewski, 1988), “multiple stigmas” (Crandall et al., 1991; Slater et al., 2015), and “intensified stigma” (Sandelowski et al., 2004; Sangaramoorthy et al., 2017) have been used by researchers that highlight the intersection of health-related stigma with other social oppressions and adversities (Chambers et al., 2015; Crenshaw, 2002; Li
ϳ
et al., 2009). Such experience of intersectional stigma associated with a person’s health condition and social identity/inequalities like gender, sexuality, poverty, etc.
can lead to concealment of the condition, social exclusion and isolation, and hamper access to health services, employment, and education (Jackson-Best, 2018; Logie et al., 2011; Parker & Aggleton, 2003; Rice et al., 2018; Seroalo et al., 2014; Sharac et al., 2010).
Researchers have stressed that in order to improve understanding of the mechanisms related to health-related stigma it is important to study its intersectional relationship with other forms of marginalization/oppression in the lives of persons living with stigmatized health conditions and the overlapping stigma they face because of such intersections (Mahajan et al., 2008; Logie et al., 2011). A better understanding of the effect of intersecting oppressions on people with stigmatized health conditions could help identify effective stigma reduction interventions that can address the multiple oppressions and stigmas in people’s lives (Logie et al., 2011).
1.2.3 Personal agency and positive experiences of overcoming stigma
The traditional literature on stigma focuses on identifying factors contributing to the harmful impact of stigmas on the lives of stigmatized individuals. This focus, however, cannot explain the many cases of individuals possessing a stigmatized identity flourishing in our society. Researchers have found that even though there are many negative effects and experiences associated with stigma, there are also positive ones which can provide a better understanding of stigma, its process, and the mechanisms of overcoming stigma (Shih, 2004). There are many positive success stories on individuals overcoming stigma through empowerment and resilience, and assuming productive social and leadership role in their communities.
These positive experiences are valuable as they illustrate the existence of personal
agency among people living with stigmatized health conditions, and can help stop
reinforcing and potentially break down stereotypes and assumptions about the
stigmatized health conditions and those affected (Peters et al., 2013). Cross and
Choudhary (2005) attempted to do just that with the stigma elimination program
ϴ
(STEP) project that actively tried to transform the image of persons affected by leprosy to that of positive change agents. In another study, researchers found that some individuals affected with leprosy developed various coping strategies and were aware of their rights, found employment, and in this way contributed to the family income (Lusli et al., 2015). These findings are helpful in the development of context- specific interventions ranging from service improvement interventions that provide positive reinforcements to the persons affected, to socioeconomic interventions to help affected persons assume economic empowerment and help change the way people in the community view them.
However, much of the existing narratives around health-related stigma highlight the negative effects of stigma on the persons affected. Even though the negative experiences of stigma are a harsh reality in the everyday lives of people living with stigmatized health conditions, it is important to focus on and bring forth narratives of positive experiences and success stories of people with stigmatized health conditions.
1.3 The need for an integrated approach to address health-related stigma:
opportunities and challenges
As more evidence emerges on stigma associated with varied health conditions, researchers have called upon an integrated approach to assessing and addressing such stigma (Stangl et al., 2019). This also resonates with the greater call for integration of health services and programs under the Sustainable Development Goals (SDG) 2030. Further, the works of researchers like Rao (2010) and Koschorke (2017) that have generated evidence on the similarity of experiences and manifestations of stigma across different health conditions, provide foundation for possibility of integrated approach to addressing stigma. Till date, there have been some stigma-reduction interventions specifically focusing on infectious diseases like HIV (Andersson, 2019) and leprosy (Dadun et al., 2019), and mental illness like schizophrenia (Morgan, 2018; Silva, 2017), but they remain fragmented and isolated within the specific health condition. There is clearly a need to explore the possibility of an integrated and generic approach to addressing stigma across different
ϵ
conditions that co-exist in the society, which will not only help in reducing stigma across a wide range of stigmatized health conditions, but also help bring stigmatized individuals together for greater solidarity and support.
Further, gaining more insights into the intersectional relationship between health- related stigma and other forms of social oppression/inequality, and the positive experiences of overcoming stigma may help in improved understanding of the dynamics of health-related stigma and the factors that influence these processes. It is expected that this new knowledge may contribute to the development of more efficient approaches to advance the quality of life of the person affected by stigmatized health conditions and in decreasing the burden of different diseases by an improved approach to management and control of stigma and its consequences.
Besides these opportunities, some challenges can also be expected in this study.
There is, for instance, a lack of knowledge about the perceptions of one stigmatized group towards another stigmatized group. While it might be beneficial to bring together people living with different stigmatized health conditions for a common stigma reduction intervention, it is important to understand the inter-group dynamics and the perception of people living with a health condition towards both - others living with the same health condition and those with different health conditions (Heijnders, 2006; van Brakel et al., 2019). This is important as such interactions can lead to further negative experiences of stigmatization and oppression (Jetten, 2018;
Padilla, 2003). Another challenge that exits is the actual possibility of an integrated response to stigma. The prospects of intergroup learning, knowledge sharing, and collaboration are novel and exciting, but it also poses questions on the actual success, feasibility, and sustainability of such an effort. These nuances need to be understood and strategies to address possible barriers and bottlenecks need to be identified.
Taking into account both these opportunities and challenges, this thesis aims to
bridge the existing knowledge gap by enhancing the understanding of the multi-
dimensionality of health-related stigma. This thesis offers insights into the
ϭϬ
experiences of stigma across different health conditions, their intersection with other adversities emanating from varied social inequalities and oppressive identities that an individual bear, and explore the cases of positive experiences of overcoming stigma. With such insights, this thesis seeks to explore the possibility of a common stigma reduction response that can be applied across a diversity of health conditions and provide pertinent recommendations for future studies.
ϭϭ
ϭϮ
CHAPTER 2:
THEORETICAL CONCEPTS
ϭϯ
ϭϰ
CHAPTER 2: THEORETICAL CONCEPTS
This chapter first discusses the concept of stigma and how it has been adapted to describe stigmatization related to health conditions. Then it highlights the underlying mechanisms of how stigma occurs, and its impact. Then the chapter describes the overarching theoretical model and related concepts that underpin this research. It presents the socioecological model as an overarching multi-level framework applied in this thesis. Finally, it discusses the concept of multi-level manifestation of health- related stigma that is embedded within the socioecological model.
22.1 Concept of health-related stigma
Goffman, a social scientist, first described stigma in his seminal work as an attribute that is discredited by the society leading to “spoilt identity” of the persons affected (Goffman, 1963). The conceptualization of stigma in sociology has since evolved over the years, with improved understanding of the mechanisms and processes of stigmatization (Bos et al., 2013; Scambler, 2009; Weiss, 2006). However, most definitions of stigma still follow the “deviance paradigm” that comprise of two fundamental components, namely, the recognition of difference and devaluation (Dovidio, Major, & Crocker, 2000). Following this tenet, stigma researchers like Bos et al (2013) and Scambler (2009) have characterized stigma as shame, disapproval and discredit for having an identity or attribute that deviate from what the society perceives as “normal”.
Goffman (1963) and other stigma researchers (Bos et al., 2013; Scambler, 2009) also noted that having a disease or a health condition can evoke social scrutiny and devaluation in the society. Thus, the concept of stigma was eventually adapted in health research to address the stigmatization faced by people living with/affected by different health conditions. Many definitions and frameworks of health-related stigma have now been developed by researchers from varied health disciplines (Bos, Pryor, Reeder, & Stutterheim, 2013; Corrigan, Larson, & Kuwabara, 2010; Link &
Phelan, 2001; Parker & Aggleton, 2003; Rao, 2010; Scambler, 2004; Stangl et al.,
ϭϱ
2019; Thornicroft, 2011). This study uses the definition of health-related stigma by Weiss et al. (2006), which is comprehensive and widely used in the field of stigma research:
“Stigma is typically a social process, experienced or anticipated, characterized by exclusion, rejection, blame or devaluation that results from experience, perception or reasonable anticipation of an adverse social judgment about a person or group. This judgment is based on an enduring feature of identity conferred by a health problem or health-related condition, and the judgment is in some essential way medically unwarranted. (Weiss, Ramakrishna, &
Somma, 2006: 280).”
With the advancements in disability research and the greater call for positioning health-related stigma as a human rights issue, the medical sociology's “deviance paradigm” to explain health-related stigma was challenged by an “oppression paradigm” (Thomas, 2007). The oppression paradigm features health-related stigma as a social inequality that subjects those with health conditions to devaluation and denigration – which constitute violation of human rights and dignity of individuals.
This concept was further extended by stigma researchers like Corrigan, Watson, Byrne, & Davis (2005) and Perlin & Dorfman (1993) for stigma associated with mental illness. Corrigan described stigma as a social justice issue and called for a human rights perspective to viewing and addressing stigma. Corrigan (2005) noticed how conceptualizing mental illness stigma as a social justice issue brought visibility to the plight of people living with mental illness and portrayed them as “people” like everybody else. The social justice perspective highlights the importance of human rights, equality, and dignity for all those who are stigmatized and oppressed because of their health condition, and seeks rights-based initiatives to combat the pervasive issue of stigma.
22.1.1 M Mechanisms of stigmatization
In order to understand health-related stigma, it is important to know the process and
mechanisms of how stigma originates, is perpetuated, and reinforced. Studies have
ϭϲ
shown that health-related stigma originate from the socially prevalent negative stereotypes and prejudices against the disease and/or the person with the disease, that is driven by fear, misconception/misbeliefs, and lack of knowledge (Crocker 1999; Dovidio, Major, & Crocker, 2000; Scambler, 2009).
Link and Phelan (2001) further extended this knowledge by developing the conceptualization of socio-psychological mechanisms of stigmatization. They defined stigma as a social process that exists ‘‘when elements of labelling, stereotyping, separation, status loss, and discrimination co-occur in a power situation’’. They presented five components in their conceptual model: (i) the first component is distinguishing and labeling human differences, which involves categorizing people according to salient characteristics and attributes they hold; (ii) the second component is the linking of such categories (with labels) to negative stereotypes; (iii) third, once labels are linked to negative stereotypes, stigma processes lead to a separation of ‘us’ from ‘them’, leading to comparisons and a feeling of exclusion; (iv) fourth, status loss and discrimination are experienced as a result of stereotyping; and (v) finally, they highlighted the role of power dynamics in stigmatization – especially the differences in social, cultural, economic, and political power between people with and without a stigmatized condition/attribute. This imbalance in power by virtue of being members of a stigmatized group puts people in disadvantaged situations socially, occupationally, and economically.
22.1.2 Impact of health-related stigma
Health-related stigma impacts not only people with a health condition, but also their family, the society they live in, and the effectiveness of national and global public health efforts to curb the burden of diseases (van Brakel et al., 2006). People living with stigmatized health conditions experience exclusion and discrimination in the different facets of the society, including education, healthcare, employment, housing, relationships, etc. (Berger et al., 2011; Browne et al., 2013; Dyer, 2010;
Gupta et al., 2015; Stergiou-Kita, Pritlove, & Kirsh, 2016). They are known to be ostracized and mistreated in their social circle and health settings (Berger et al., 2011;
Dyer, 2010; Stergiou-Kita et al., 2016); given lesser opportunity for employment,
ϭϳ
decision making, and social participation (Browne et al., 2014; Meacham et al., 2016;
Park et al., 2010); and have problems in their personal relationships and married life (Berger et al., 2011; Browne et al., 2013; Nishio & Chujo, 2017). Further, family members, friends, and people close to the affected individuals are also known to experience mistreatment and ostracization in the society because of their association with the person affected (Angermeyer et al., 2003; Ostman et al., 2002).
With such stigmatizing acts targeted towards them and people close to them, people with stigmatized health conditions live in fear and anticipation of such exclusionary behavior and mistreatment (Pryor and Reeder, 2012; Scambler, 2009). This is known to discourage them from seeking health services, adhering to the treatment regimen, and disclosing their health condition (Parker & Aggleton, 2003; Rao, 2010; Stangl et al., 2019; Thornicroft, 2011). Besides the impact on the treatment and management of the health conditions, studies have found that stigma experiences can also cause various social and psychological effects on those affected including social isolation, avoidance of social roles and participation, stress, anxiety, depression, and suicidal ideation (Berger et al., 2011; Rusch et al., 2005; Thronicroft, 2011). Thus, health- related stigma not only undermines the effectiveness of public health response for management, control, and treatment of different health conditions, but can also increase the burden of psychological/mental health problems like stress, anxiety, and depression.
22.1.3 M Mitigation of health-related stigma
Health-related stigma is complex and multifaceted. Hence, the mitigation or
reduction of health-related stigma is complicated and arduous, and requires a
multifaceted, multidimensional, and nuanced approach. Heijnders and van der Meij
(2006) provided a multi-level categorization of stigma-reduction strategies in three
different levels: micro, meso and macro. Following in the recommendations of
Heijnders and van der Meij, such multi-level stigma-reduction strategies have also
been detailed by other prominent stigma researchers like Cook et al. (2014) and Rao
et al. (2019). The concept entails categorization of the stigma reduction strategies in
the different socioecological levels. The micro-level includes strategies focused on
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the stigmatized individuals that help to bring about positive changes in motivation, attitude, perception, behavior, self-esteem and confidence, and coping. The meso- level strategies include dispelling misinformation, negative stereotypes, fear and prejudice in the community against those living with stigmatized health conditions.
The strategies also include interventions to foster understanding and strengthen relationships between the public/societal actors and stigmatized individuals. The macro-level strategies focus on policy and practice aspects of stigmatization, and works towards eliminating discriminatory policies, laws, culture, and practices in the socio-cultural, political and organizational stratas.
Besides these multi-level strategies, researchers argue that another most important aspect in stigma reduction is understanding the nuances of stigma. Stigma researchers (Chambers, 2010; Chambers et al., 2015; Weiss et al., 2006; Yang et al., 2007) pointed out that stigma is contextual and in order to address stigma, it is first important to understand the local context and everyday lives of people in the local setting. It is only when you understand the local culture and context, can you devise an effective plan to address the stigma persistent in that setting. Parker and aggleton (2003) described the importance of addressing the causes of stigma in order to effectively combat it. Stigma emanates from deeper social, economic and political causes and the rampant misinformation, negative stereotypes, detrimental attitudes, and biased perceptions they perpetuate. Hence, as Rao (2010) puts it -
“understanding these nuances is the key to formulating effective strategies for the reduction of health-realted stigma”
2.2 The socioecological model
The socioecological model developed by Bronfenbrenner (1979) was first introduced as a model to illustrate how psychological development in humans depends on the society and the wider environment they exist in. This model was then extended as a multidisciplinary model that can be used for understanding of the multiple levels and stratifications within a society and how individuals and the environment interact within a social system. The model takes into consideration the dynamic interrelation and interaction between the individual, and their affiliations to
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people, organizations, and their community-at-large. The model has been used across a wide range of disciplines from psychology (Morin, 2004) and public health (Richard et al., 2011) to agriculture (Altaweel, 2008) and climate science (Lereboullet, 2013).
The Socioecological model is widely used in public health as it can accommodate a diversity of disciplines and theories (for example, health promotion, behavior change, access to health services, etc) while retaining the central tenet that all levels of influence are important and they together provide a full and holistic picture of the situation (Glanz et al., 2015). It can also provide a framework for integrating multiple theories and can help in comprehensive analyses of population health to explore factors underpinning social inequalities and health disparities. Further, the model is also flexible and has been modified and adapted to fit different research designs.
Depending on the adaptations, there are several stages or levels in the socioecological model. One of the most commonly used socioecological models in public health developed by the United States Centers for Disease Control and Prevention (CDC) depicts five stages/levels– Individual, interpersonal, organizational, community, and public policy (CDC, 2015). The model contextualizes individuals’
behaviors using these five stages/levels including individual (e.g. knowledge, attitudes, behavior), interpersonal/network (social networks, social support), organization (sectoral institutions – schools, hospitals, etc), community (e.g.
relationships among organizations/ institutions), and public policy (e.g. local, state, national laws) to provide a framework for describing the interactions between these levels (CDC, 2015).
However, for this thesis, a modified socioecological model by Cook et al (2014)
developed specifically for health-related stigma was chosen as an overarching
analytical framework to explore the experiences of stigma in the multi-levels of the
society and to explain the complex associations between structural factors, social
interactions, and the individual responses in relation to health-related stigma (figure
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1). This model has been used previously in studies on different health-related stigmas like Cancer (Hamann, 2018) and mental illness (Xu, 2018).
The modified model describes three socioecological levels – intrapersonal/individual (micro), interpersonal (meso), and structural (macro). The outermost macro or structural level deals with policies, practices, norms and power structures and dynamics that restrict, undermine, subjugate, or oppress the marginalized. The meso or interpersonal level deals with interactions with societal actors that give way to perpetration of prejudice and discrimination towards those oppressed based on the prevalent negative stereotypes in the society. Finally, in the innermost micro or intrapersonal level, the experiences from macro and meso levels give rise to negative internalized feelings among those affected (Cook, 2014; Hatzenbuehler, 2016;
Livingston & Boyd, 2010).
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Figure 1. A modified three-level socioecological model developed by Cook et al. (2014)
22.2.1 Multi-level manifestations of stigma
Stigma exists and manifests in different forms and levels of the society (Cook et al., 2014; Earnshaw & Chaudoir, 2009; Hatzenbuehler & Pachankis, 2016; Pryor &
Reeder, 2011). These different manifestations of stigma are embedded within the
multi-levels of society based on Cook’s (2014) three-level socioecological model
where they exist and occur. Pryor and Reeder (2011) articulated a conceptual model
that sought to bring greater clarity to the existence and experience of stigma in the
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society. This model depicts four dynamically interrelated manifestations of stigma in the three socioecological levels:
(i) Structural stigma, which resides in the structural/macro level, is defined as the “societal-level conditions, cultural norms, and institutional practices that constrain the opportunities, resources, and wellbeing for stigmatized populations” (Hatzenbuehler & Link, 2014: 2). It includes systemic policies, practices and norms that perpetuate and reinforce inequities, injustice, othering, discrimination, and oppression.
(ii) Public stigma, also known as social stigma, which reside in the interpersonal/meso level and represents people’s social and psychological reactions to someone they perceive to have a stigmatized condition (Scambler, 2009);
(iii) Stigma by association, also known as courtesy stigma, which also resides in the interpersonal level and includes “social and psychological reactions to people associated with a stigmatized person (e.g., family and friends) as well as people’s reactions to being associated with a stigmatized person”
(Bos et al., 2013: 2); and
(iv) Self-stigma, also known as personal stigma, which resides in the intrapersonal/micro level and reflects the social and psychological impact of possessing a stigmatized condition or trait and includes both the apprehension of being exposed to stigmatization and the potential internalization of the negative beliefs and feelings associated with the stigmatized condition (Pryor & Reeder, 2011). The concept of personal/self-stigma was further extended by Scambler (2004) in his hidden distress model of stigma developed to study stigma among people who have epilepsy, in which he described two distinct experiences of self- stigma – Enacted stigma, which refers to actual experience of discrimination by people with stigmatized conditions, and felt stigma,
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which is the shame of being associated with the stigmatized group and the fear of enacted stigma Scambler (2004). Weiss (Weiss, 2008) and Tabah (Tabah, Yepnjio, & Njamnshi, 2014) in their studies on stigma related to neglected tropical diseases (NTDs) further extended the concept of felt stigma from Scambler’s model into perceived stigma (perceptions about how societal actors negatively view and judge those with the health condition), internalized stigma (acceptance of stigmatizing social views and resultant feeling of shame for having the disease), and anticipated stigma (fear of encountering enacted stigma because of one’s health condition).
This thesis uses the socioecological model as an overarching theoretical framework
to inspect the multi-level manifestation of stigma, its impact, and implications
throughout the research process.
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CHAPTER 3:
RESEARCH DESIGN
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CHAPTER 3: RESEARCH DESIGN
This chapter presents the overall research approach and design and provides an overview of the methodology that was adopted in each of the studies.
This section provides information pertinent to understanding the research questions adopted in this thesis. In order to explore the multi-dimensionality of health-related stigma, Indonesia was chosen as the study location. The unique position of Indonesia as a lower-middle income country undergoing an epidemiological transition with higher burden of both infectious and non-communicable diseases provided opportunity to study stigma associated with different health conditions within the same social and cultural setting.
Four different stigmatized health conditions were selected in this thesis – two infectious (HIV and leprosy) and two non-communicable (one mental illness – schizophrenia, and one metabolic disorder – diabetes) - with high public health significance in Indonesia. Through the examination of these four different stigmatized health conditions within the continuum of public health issues of a developing country like Indonesia, this study aimed to explore the multi- dimensionality across the experiences and consequences of stigma, its intersection with other social oppressions, and the positive deviant strategies of the people living with these conditions, their perspectives on their experience of stigma and towards other stigmatized conditions, and the feasibility of a common stigma response.
In this regard, the main research question for the study is:
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?
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This chapter will first introduce the three main parts of the overall study, the different sub-studies under each part and their corresponding sub-research questions (section 3.1). Then it will elaborate on the transdisciplinary research (TDR) approach that was adopted in this thesis (section 3.2). Section 3.3 will provide more details on the methodology employed in the different studies and includes a discussion on validity and ethical considerations.
3.1 Research design and research questions
The research was set up in three parts based on their different focus. The socioecological model was used as an overarching theme to aid in the multi-level analysis of the study. The three parts of the research are detailed below:
Part 1: Understanding the experience of health-related stigma
The first part of this study focused on exploration of the lived realities of health- related stigma using a multi-level lens. First a systematic review was conducted in order to fill the evidence gap on comprehensive understanding of stigma related to non-communicable diseases. This correspondend to the first sub-question:
Sub-question 1: What is the evidence in scientific literature on stigma related to non-communicable diseases
Then empirical studies were conducted to explore the experiences of health-related stigma and how their interaction with other social oppression/inequities shape the lived reality of people living with stigmatized health conditions in Indonesia. The sub- research questions formulated to guide these studies were:
Sub-question 2: What are the similarities and differences in the stigma experienced by people living with HIV, leprosy, schizophrenia, and diabetes.
Sub-question 3: How do the different social oppressions and oppressive identities
intersect with the experience of health-related stigma among people living with
HIV, leprosy, schizophrenia, and diabetes in Indonesia.
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Part 2: Overcoming health-related stigma
The second part of this study highlighted the existence of personal agency among people living with stigmatized health conditions and focused on exploration of strategies employed by people living with HIV, leprosy, schizophrenia, and diabetes to avert stigma in their lives. The sub-research questions in this part of the study were:
Sub-question 4: How do positive deviants with HIV, leprosy, schizophrenia, and diabetes in Indonesia manage to overcome stigma
Sub-question 4a: Does positive deviance improve the health-related quality of life of individuals living with stigmatized health conditions?
Part 3: Prospects of common health-related stigma reduction response
The third and final part of this study explored the prospects of a common response to address health-related stigma across different health conditions. This part had the following sub-research questions:
Sub-question 5: What are the prospects of a common health-related stigma reduction response?
Sub-question 5a: How do people living with different health conditions perceive each other?
Sub-question 5b: What are the prospects of bringing together people living with different health conditions for a common health-related stigma reduction response?
Table 2 presents the overview of the research questions and corresponding chapters of the thesis that answer the respective questions.
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societal stakeholders (Betten, 2013; Bunders & Broerse, 1991). This approach is specifically helpful in addressing complex, pervasive, and persistent issues in the society, and has been successfully applied and adapted to different fields like agriculture (Zweekhorst 2002), health (Swaans, 2009) and biotechnological innovation (Betten, 2013). The key features of the ILA approach include inclusion and active participation of stakeholders throughout the research, and knowledge sharing, co-creation, and integration. The ILA approach has five essential phases. The first three phases are called reconnaissance, which includes elaborate exploration of the issue under investigation in order to have in-depth understanding of the topic and related contexts. It is followed by the remaining two phases that focus on planning, designing and implementation of intervention to address the issue.
The five phases of ILA approach are as follows: (1) Exploratory phase: in this phase a research team is formed and preliminary insights on the research topic are developed through review of literature and exploratory interviews with relevant stakeholders; (2) In-depth phase: this phase further identifies and analyzes the perspectives, insights, ideas and opinions of different stakeholders involved in the research; (3) Integration phase: the diverse perspectives and ideas are compared, assimilated and integrated through a multi-stakeholder dialogue; (4) Prioritization and action planning phase: the stakeholders build consensus on a common vision to address the complex issue under consideration; and (5) Implementation phase: the agreed-upon plans are finally implemented in learning-action spirals (see figure 2;
Kemmis & McTaggert,1988) wherein the reiterative cycle of planning, action, observation, and reflection lead to the next cycle that provides a revised and improved plan. These learning-action spirals represent the action research spiral (Kemmis & McTaggert, 1988) and is presented in figure 2.
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Figure 2. Action Research Spiral (Kemmis & McTaggert, 1988: 154)
3.3 Methods 3.3.1 Study setting
Indonesia is the world's largest island country located in southeast Asia, with more than seventeen thousand islands, and at 1,904,569 square kilometers (735,358 square miles), the 14th largest by land area and 7th in the combined sea and land area (Ananta et al., 2015; World Bank, 2019). With over 267 million people, it is the world's 4th most populous country as well as the most populous Muslim-majority country (Ananta et al., 2015; World Bank, 2019). Java, the world's most populous island, is home to more than half of the country's population. The country's capital, Jakarta, is the second-most populous urban area in the world (Ananta et al., 2015).
Being the world’s fourth populous developing nation with relative high prevalence
and distribution of both non-communicable and communicable diseases makes
Indonesia particularly vulnerable to the burden of stigma compared to other
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countries from South-East Asia (Boutayeb, 2006; Omran, 2005; Vos et al., 2015). It has the highest prevalence of HIV in the region of South-East Asia (UNAIDS, 2017), while the prevalence of leprosy is the third highest in the world (WHO, 2019), together with a high prevalence of non-communicable diseases like diabetes mellitus (6.7% in adults) (IDF, 2020) and schizophrenia (around 1%) (Vos et al., 2015). With a high burden and growing prevalence of these four diseases in the Indonesian society, comes the social effect of having such a disease – stigma and its experiences in the daily life of people affected (Dewi et al,. 2020; Hartini et al., 2018; Lusli et al., 2015; Peters et al., 2013; Peters et al., 2015; Pujilestari, 2014; Sianturi, 2019). In this regard, it is important to further explore and understand the stigma related to these four different diseases that are of the utmost relevance to the Indonesian population health.
3.3.2 Study population and selection
The study locations were chosen based on the higher proportion of individuals with different health conditions in those regions (Fajarini et al., 2019; Humas, 2014; Peters et al., 2013; Witaningrum et al., 2018). Participants with HIV and diabetes were recruited in Jakarta, those affected by leprosy in Cirebon, West Java, and those with schizophrenia in Jakarta and Cianjur, West Java. The study locations are shown in the figure 3.
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3.3.3 Study timeline and ILA phases
This study project was conducted between September 2017 and March 2020.
Applying the ILA approach, this study was conducted in five phases. This section describes the timeline and activities under the five ILA phases (overview in figure 4).
Figure 4. An overview of the study timeline and ILA phases
Exploratory phase (September 2017 – March 2018)
The impetus for this study on the multidimensionality of health-related stigma was driven by the recommendations from the findings of the Stigma Assessment and Reduction of Impact (SARI) project that was conducted in Cirebon district of Indonesia between 2010 and 2015 (Lusli et al., 2015;2017; Peters et al., 2013; 2015).
The project sought to understand the experience and impact of leprosy stigma on people affected, design and implement stigma reduction interventions, and evaluate their effectiveness. Two specific recommendations from the project were applied to design this study. One of the main recommendations from the project was to further explore the multi-dimensionality of health-related stigma, specifically in regards to its manifestations and impact across different health conditions, intersectionality with other social adversities, and the existence of positive personal agency among the
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stigmatized. The second recommendation was in regards to assessing the feasibility of bringing people living with different stigmatized health conditions together and having a common stigma reduction intervention.
Using these two research recommendations and funding from two sources [Leprosy research initiative (LRI) and Erasmus Mundus Joint Doctorate (EMJD) fellowship], this project was developed. An interdisciplinary research team was first set up for this project in September 2017 that consisted of researchers from different scientific disciplines (pharmacy, epidemiology, global/public health, sociology, psychology, disability studies, development studies, and health communication) and countries (Indonesia, Netherlands, Nepal, Russia) [see Appendix 1 for the full list of researchers]. The next step included identification of relevant stakeholders in the field of HIV, leprosy, schizophrenia and diabetes (Non-governmental organizations, community-based organizations, research institutes, advocacy groups) some of which were from the SARI project (FKDC) , while others were new (LAP, YCJ, KPSI, PJS) [See Appendix 1 for the complete list of stakeholders and their roles in the project]. Four resource persons were recruited from these organizations who were also those affected by the health conditions and helped in establishing contact with the study participants. Three research assistants with Bachelor’s degree were also hired – two were psychology graduates, while one was management graduate and also a person affected by leprosy.
Initial meetings were conducted between the research team and resource persons
to further discuss and streamline the study objectives. Literature search and review
on existing multi-disciplinary theories and studies on stigma and health-related
stigma were also undertaken to gauge the existing scientific knowledge and gaps on
health-related stigma. During this period, a systematic mixed-methods review was
conducted to improve understanding on non-communicable diseases-related
stigma (chapter 4).
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In-depth phase (March 2018 – September 2019)
Based on the knowledge and insights gathered from the exploratory phase, four studies (chapter 5 to 8) were conducted in the in-depth phase. This phase included collecting data on lived experiences, perceptions, opinions, and ideas of the stakeholders on the topics of health-related stigma, intersectionality, positive deviance, and quality of life. Surveys and interviews were conducted among people living with stigmatized health conditions (presented in chapters 5 to 8) during this phase to advance in-depth understanding of their multi-dimensional experiences of living with stigma. Stakeholders’ meetings were also held during this phase which included research experts, resource persons, representatives of people living with different health conditions, and their key support persons – caregivers, family members, friends, etc. These meetings helped bring together varied insights from different perspectives on the existing scenario of health-related stigma in Indonesia.
Integration phase (April 2018 – September 2019)
This phase entailed reflection on the insights from the studies conducted during the in-depth phase, along with collection and assimilation of the perspectives of different stakeholders. The main perspective that this study was looking into was on how people living with different health conditions perceived each other, and if they were willing to have a common intervention to address health-related stigma where people with a diversity of health conditions can participate (chapter 9). After collecting such insights from people living with different health conditions, an stakeholders meeting was held to further discuss the findings and the other stakeholder’s (research team, resource persons, representatives of NGOs and CBOs) opinions on the feasibility of a common stigma reduction intervention. Stakeholders agreed that such an intervention can be useful as it can help bring together not only people living with different health conditions, but also the existing knowledge, resources, and efforts which remain fragmented otherwise. Stakeholders also discussed on the best possible route to take (type of response/intervention to focus on, participant groups to include) taking into account the insights generated so far, and limited funding and time available for the project.
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Prioritization and action planning phase (March 2019 - September 2019)
A final consensus was reached in this phase on the selection of the type of response/intervention to pilot and the health conditions to include in the intervention. Based on the findings from the in-depth phase, and the stakeholders’
insights collected during the integration phase, HIV, leprosy, and schizophrenia were chosen to be included in the pilot intervention. An intergroup training on counseling and advocacy was chosen as a fitting intervention, and Dr. Mimi Lusli (Mimi Institute) was brought on to the project as a consultant to help in the development of a training module. The counseling module used during the SARI Project for leprosy stigma (Lusli et al., 2017) was modified to include HIV and schizophrenia. The intergroup training was developed during this phase using the learning action spirals. The process entailed design and planning of the training, discussion between the stakeholders on the proposed design and plan, revision based on the inputs, and reiteration of the process of discussion among stakeholders until final consensus and agreement was reached. Trainers (psychologists, counselors, and training staffs), and research assistants (3 psychology graduates) were also brought onto the team to implement the training.
Implementation phase (September 2019 – March 2020)
In this phase the plans developed for the intergroup training were put into action.
The training aimed to understand if it is feasible to foster understanding, empathy,
collaboration, and stigma reduction among people living with HIV, leprosy, and
schizophrenia. A detailed description of the training is presented in chapter 10. The
research team along with resource personnel helped implement the training in
September 2019. Pre- and post-training interviews were conducted before and after
the training to assess any changes in the perception of the groups towards each
other, possibility of intergroup collaboration, and stigma experiences. The 6-day
training included sessions designed to foster intergroup contact and knowledge
sharing (days 1 to 3) and training on counseling and advocacy (days 3 to 6). On the
last day of the training (day 6), a stakeholders’ meeting and discussion was held in
Jakarta where the participants talked about their experiences of taking part in the
intervention, lessons learnt, and recommendations. The meeting also included
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discussions between the participants, government officials, and representatives from NGOs on the needs of people living with stigmatized health conditions, the resources and support available, and expectations/ recommendations.
A final stakeholders meeting was conducted locally in Jakarta and Cirebon, where the participants discussed with local officials and advocated on the collective needs of people with HIV, leprosy and schizophrenia. The collected data were analyzed and the findings were communicated among the stakeholders. Besides this thesis, a final report on the design and implementation of the intergroup training was also prepared for submission to LRI and wider public dissemination.
3.3.4 Overview of research methods
This study employed mixed-methods approach, wherein both quantitative and qualitative data collection was conducted. For quantitative data collection, a questionnaire with social distance scale (SDS) (Bogardus, 1933; Peters et al., 2014) and the World Health Organization Quality of Life (WHOQOL)-BREF in Bahasa Indonesia (WHO, 2004) was used. For qualitative data collection, Interview and focus- group discussion (FGD) guides were developed based on consultations with research experts, and representatives from non-governmental organizations and the different disease groups. The tools used in each sub-study are presented in respective chapters in this thesis.
The survey questionnaire was filled by the participants themselves (self- administered). Qualitative data collection (Interviews and FGDs) was conducted by a group of three Indonesian research assistants under the supervision of the principal investigator (SSR), and were held either in participants’ homes or at the non- governmental organization offices in privacy. The research team was trained by the principal investigator (SSR) on interview techniques and strategies for qualitative data collection prior to fieldwork. Qualitative data was recorded electronically, transcribed verbatim, translated, managed, and analyzed with the qualitative software package ATLAS.ti (version 8.4.18). Quantitative data was entered into Epi Info™ (version 7), and analyzed using statistical packages- SPSS (version 22) and STATA (version 8). The
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research approach employed in each study is described in detail in the methods section of chapters 4 to 10. A summative overview of the ILA phases and corresponding studies, methods, and participants included in this thesis is presented in table 4.
