Stigma plays a significant role in a variety of conditions and diseases, including HIV/AIDS, mental illnesses, tuberculosis, Ebola and leprosy [1
]. Health-related stigma is an important problem because it has various adverse and interconnected effects on the person affected—physical, social and psychological. In the case of leprosy, the physical impacts such as a deformity can cause or increase stigma towards people affected, reducing their self-esteem, which results in negative feelings and emotions [6
]. The impact of stigma goes well beyond the individuals directly affected by the condition or disease. Health professionals, families, social networks, the wider community and others associated with an affected person are often also stigmatized, a process called courtesy stigma [9
]. Leprosy can drive persons affected and their family into poverty or deepen their existing poverty.
The relationship between leprosy, stigma and poverty has been explored by various scholars [7
]. Leprosy can lead to stigmatization, which underpins two negative dynamics. First, stigmatization is usually followed by social rejection, exclusion and discrimination, and sometimes even by family members and loved ones [3
]. Second, people affected by leprosy sometimes become isolated because of a fear of infecting others or because of internalized feelings of being less worthy [3
]. As a result, people affected by leprosy might lose their job or their customers, or may decide to resign or close their business. This affects the financial situation of their household [17
]. In a way there is a double burden: Poverty and leprosy both produce stigma. Even worse, if the people affected by leprosy delay seeking care, for example due to poverty and stigma, they might develop an impairment which might lead to disability and even more stigma and poverty [18
Previous studies show that people affected by leprosy see benefits in a socio-economic intervention [19
]. In one of our previous studies a participant affected by leprosy made a direct link between running a business and less mockery (a manifestation of stigma). She said, ‘… to avoid mockery, we have to run a business
]. A key person in the same study suggested that financial aid of some sort ‘could give them (people affected by leprosy) the passion to live their life again
’. Similarly, Velema et al. mention that clients of a socio-economic intervention can have an enormous boost in self-esteem [20
]. They also note that activities such as selling products at the market changes dynamics among people in their community with the result that they might perceive people affected by leprosy more positively [20
]. Recent studies show similar effects. Abera and Shanko [21
] found in their study on leprosy in Ethiopia that 86% of the participants who received a small loan reported a considerable improvement in attitudes of community members and family members. Likewise, Ebenso et al. concluded from their study in Nigeria that socio-economic rehabilitation can lead to more social interaction and change community attitudes [11
Socio-economic intervention succed to improve well being and economic life of the people affected by leprosy, but at the same time faced important challenges for creating a sustainable socio-economic intervention for people affected by leprosy [14
]. Challenges include certain characteristics of people affected (e.g., low self-esteem, shame, internalized stigma), people’s ignorance about leprosy, and negative views in society that may affect the business. As a result, there are serious doubts whether a local financial or social organization would accept leprosy clients as a target group for microcredit. The rationale is that setting up a business with microcredit is difficult enough without the additional barriers of being affected by leprosy; giving loans to such people is considered too much of a risk. (Indeed, often socio-economic programmes for people affected by leprosy revolve around providing grants instead of loans, e.g., [10
], making socio-economic rehabilitation expensive and unsustainable.) At the same time, in order for a socio-economic development (SED) intervention to be sustainable in the longer term, working with established local actors/parties and using an integrated approach are seen as a key prerequisite [27
]. This poses a challenge to the current project. Sustainability should be a ‘built-in’ criterion of the intervention design. Some concrete suggestions on how to deal with these challenges are also provided in the literature. Even more than in standard microcredit programmes, those aimed at people affected by leprosy Abera and Shanko [21
] highlight the importance of investing in a good relationship between them and the credit provider (e.g., regular follow-up visits, advice). In addition, Ebenso et al. [11
] describe the importance of involving key persons in the community, connecting to local government bodies, and including people with general disabilities. It is thus not straigthforward to develop a sustainable socio-economic intervention that can deal with these challenges and that contributes to earning an income and reducing reduction. A combination of an exploratory study, baseline study, implementation phase and final survey was carried out to understand the development and effect of the intervention.
The aim of this study is to assess how effectively a twin track of SED intervention can improve socio-economic status, reduce leprosy-related stigma, and facilitate social transformation in people affected by leprosy in Cirebon District, Indonesia. A secondary aim is to explain the factors that contributed to the observed changes, giving insight into how the intervention accommodates the challenges of developing a SED intervention that is sustainable after the end of the project.
Theoretical Framework: Stigma and Socio-Economic Transformation
In this study we use the conceptualization of stigma by Weiss [29
] to distinguish between different types of stigma so we are able to see where an SED intervention precisely has an effect. In addition, we use the model of Pati and Lyngdoh [24
] to show how a microfinance intervention can lead to economic and social transformation and which indicators are important.
To distinguish between different types of stigma, Weiss extended the hidden distress model of Scambler [29
], contrasting the stigmatized and stigmatizers with different types of stigma in each. In the stigmatizers, Weiss distinguished between enacted, endorsed and accepted stigma, and found internalized, perceived, and experienced stigma [29
]. Perceived stigma refers to a person with a stigmatized condition who behaves or feels a certain way due to anticipated responses. Internalized or self-stigma is the stigma people feel because of negative views about themselves, which could lead to feelings of shame and guilt. Finally, enacted stigma is often called discrimination.
A model developed by Pati and Lyngdoh (see Figure 1
) shows how a microfinance intervention can lead to economic and social transformation [24
]. Economic transformation is described, among other benefits, as having access to an income and savings, economic decision-making and household property. A positive economic transformation can result in increased well-being, which is the start of a ‘social transformation’, which refers to changes in the following indicators: satisfaction (e.g., life vision, planning the future), capacity (e.g., networking, socialization, life skills), decision-making, health, travel and mobility, recognition and acceptance [24
2. Materials and Methods
2.1. Study Design and Study Area
This study is part of the Stigma Assessment and Reduction of Impact (SARI) project, which aims to assess the effectiveness of three stigma-reduction interventions. Here we focus on the SED intervention, for which a cluster-randomized controlled intervention study design was selected. A mixed methods approach was used to measure the impact of the intervention on economic and social aspects such as stigma, participation and quality of life. A baseline survey was conducted at the end of 2011 and a final survey in early 2014, allowing us to assess impacts two years after the start of the intervention. The research team comprised senior researchers, PhD students and local research assistants. This study was conducted in Cirebon District, West Java, Indonesia.
2.2. Study Population
The main study population comprises persons affected by leprosy who participated in the SED intervention, those who participated in other stigma-reduction interventions (counselling and contact, for more information see [30
] and a control group that was not involved in an intervention. Key informants such as family members of SED participants, health professionals and microcredit providers were also part of the study population.
2.3. Research Methods and Sampling
Assessing a complex concept such as stigma is challenging and the quality of the evaluation depends, among other aspects, on good qualitiative and quantitative methods [33
]. A quantitative and qualitative methods were used to assess the impact of the SED intervention. Each method assesses the socio-economic status and/or stigma and its impact and together we expected them to provide a comprehensive picture. Different sample techniques were used for the different research methods.
2.3.1. Quantitative Measures
First, the demographic information of people affected by leprosy was collected. Variables included sex, age, education, marital status and disability grade. To assess socio-economic status, work status and income details were collected. Data on the repayment of the loan that people affected by leprosy received were obtained through the annual reports of the implementing organizations. Socio-economic development interventions are expected both to improve socio-economic status of participants and to increase well-being. In order to study well-being we applied three scales to measure changes in stigma, participation restrictions and quality of life (see Table 1
The SARI project established a cohort to assess the impact of stigma-reduction interventions and this paper studies a small sample of this cohort (the SED participants). The sample size for the cohort study was based on the requirements for the quantitative comparison of stigma-related scores between the intervention and the control areas. For the calculations, we have used the participation score (P-score), since this measure had the largest standard deviation in the SARI Pilot Project that took place in India and thus would provide the most conservative sample size estimate. The same principles would apply for the other scores also. The mean P-score in Tamil Nadu was ~20 (SD 19) (unpublished data of original validation study). The normal cut-off—the 95th percentile of the P-score among non-affected people—was 10. To reduce the expected mean score (20) to the cut-off for normal (10), a sample size of ~60 subjects was required in each group (SD 20; α-level of 0.05; power 80%). Because of the cluster trial design, we factored in a design effect of 2. I.e., the sample size per group was aimed to be 120. Assuming a loss to follow-up of 20% over 2 years, each comparison group therefore aimed to comprise ~150 subjects. We tested 3 interventions separately and one control area and therefore needed 600 subjects in total. In total 30 sub-districts were randomly allocated a paired intervention (‘SED-Counselling’, ‘SED-Contact’ or ‘Contact-Counselling’) or became control area. Data of people affected by leprosy was provided by the District Health Office (DHO). Only interviews undertaken in Bahasa Indonesia were included. All people affected by leprosy (including those who spoke a language other than Bahasa Indonesia, but excluding those living in a control area) were offered participation in the interventions of the SARI project. During the final survey the scales were repeated.
2.3.2. Qualitative Measures
Four qualitative methods were used to assess changes clients experienced in aspects related to economic transformation, well-being and social transformation and the sustainability of the intervention (see Table 1
). The participants of in-depth interviews (IDIs) and Focus Group Discussions (FGDs) were purposively selected, aiming for diversity in terms of age and sex.
While analyzing the quantitative and qualitative data we followed the different stages of the model of Pati and Lyngdoh [24
]; we start with economic transformation, followed by well-being and finally social transformation.
Quantitative data was entered using EPI Info versions 3.5.4 (Centers for Disease Control and Prevention., Atlanta, GA, USA) and transferred into Stata version 12.1 (StataCorp LP., College Station, TX, USA) for analysis. Descriptive measures such as means, median, interquartile range (IQR) standard deviation (SD), 95% confidence interval (CI) were used to describe the data. Paired t-tests were conducted to evaluate significance between pre- and post-interventions. A p-value of 0.05 was considered significant since some items/domains are more relevant for an SED intervention than others. For instance, we expect a larger change in the internalized stigma domain of the SARI Stigma Scale (SSS) scale compared to the experienced stigma domain.
For the interviews and FGDs, this study applied content and thematic analysis. First, a contextual text segmentation was conducted to identify similar concepts using open-ended codes. Second, similar concepts were gathered into similar content themes. Finally, triangulation among methods was performed and all the interviews were reviewed to validate the content and to minimize the risk of bias. Observation data from profile participants was used to describe the minimal change of stigma and socio-economic improvement. For the analyses of the profiles, SED participants were grouped by high, moderate and low/no stigma (using indicators such as fear, shame, and interaction with neighbours). The family’s economic condition was based on the ability to fulfil daily needs such as food and paying children’s school fees. The business condition was based on its size and growth.
2.5. Overview of the SED Intervention and How It Is Embedded in the Local System
Following our discussion of the challenges associated with SED interventions for people affected by leprosy, we can conclude that simply including these people in microcredit programmes without any adjustments is not appropriate. At the same time, mainstreaming people with a disability into regular services is the dominant discourse in contemporary practice [46
] and contributes both to their inclusion and to sustainability. Given the specific needs of people affected by leprosy, a ‘twin-track’ approach is often promoted [49
], and the SED intervention that resulted from experimentation and implementation in the SARI study is characterized by such an approach and a portfolio of activities embedded in different organizational settings.
The so-called ‘twin-track’ approach is a combined approach that is both disability-specific (it addresses special needs) and aimed at mainstreaming disability in general development (it treats disability as a cross-cutting issue). It was developed in the United Kingdom by the Department for International Development (DFID) to achieve greater equality for women [49
]. The framework was also perceived to be very relevant for the work related to disability and has been widely adopted by development and disability-related organizations and translated into their activities. It is believed that the twin-track approach can ‘help provide an enabling environment for people with disabilities to achieve greater livelihood security, greater equality, full participation in the life of the community, and more independence and self-determination’ [49
]. In the field of leprosy, a ‘twin track approach’—‘in which on the one hand, people affected by all kinds of disabilities receive mainstream services and are involved in mainstream development, while on the other hand special programmes are developed for people with particular types of disability where special needs are identified’—was recommended by Cornielje et al. ([50
], p. 31).
The twin track approach in SARI project tried to mainstream people affected with leprosy into existing microfinance businesses, collaborating with Koperasi Mitra Dhuafa (KOMIDA) and the local government. At the same time an alternative microfinance and capacity-building activity was started through a Disability People’s Organization (DPO), Forum Komunikasi Difable Cirebon (FKDC). Three other smaller activities were started; livestock and skills training, both in collaboration with the District Social Welfare Office (DSWO), and individual loans from a family member or friend with individual support through the DPO. Table 2
gives an overview of the five types of socio-economic activities.
The KOMIDA model is based on the familiar Grameen system developed in Bangladesh [51
]. To become a KOMIDA member, candidates should register and propose how to use the money. Then KOMIDA assesses the financial situation of the participants and what business they would like to run. Microcredit is given in groups of five to ten members following a five-day (10 h) training to build commitment (e.g., building trust) and develop a business plan, followed by weekly meetings to repay the credit and provide support. If one member fails to repay the other group members should cover it. KOMIDA clients are also obliged to join a savings group. KOMIDA charges interest, which helps to pay for managing the microfinance scheme. It also charges 1% of the total credit for life insurance, to ensure the family will not have debts if a participant passes away. Anticipating the challenges of including people affected by leprosy in the programme, the SARI team offered training about leprosy (medical and social aspects) to KOMIDA. People affected by leprosy who lived in areas in Cirebon District in which KOMIDA worked were invited by KOMIDA staff and the research assistants to start or join groups. These were not groups exclusively comprising people affected by leprosy, but there were usually one or two persons affected by leprosy in each.
FKDC started an alternative model for microfinance and capacity building. FKDC had recently moved from being an informal organization to a formal one. FKDC staff received training from SARI and Community Based Rehabilitation (CBR) consultants on running a microcredit programme and on personal development skills. The difference between the FKDC and the KOMIDA models is that the former is less regulated/strict and that there were monthly rather than weekly repayment meetings. In addition, there is a quarterly gathering of members of the DPO and microcredit participants for coordination and mentoring. The process is simpler than KOMIDA’s since the participants just have to apply for microcredit and propose how to use the money. The repayment is explained in only one day. The FKDC team assesses the (financial) situation of participants, what business they run, and the condition of the neighbourhood. FKDC prioritizes people affected by leprosy and with disabilities; people with leprosy represent about 60%, with a disability 20% and general no more than 20%. FKDC staff know the beneficiaries personally and provide support during the process. FKDC also charges interest to help to pay for managing the scheme.
Three other smaller socio-economic related activities were started. First, there was an individual support model. The SARI team found that some people affected by leprosy felt insecure about obtaining credit from a formal institution. They were afraid of failing to repay it and being drawn into debt. In view of this, the SARI team encouraged them to have microfinance support from their trusted friends, parents, brother, or other relatives. Together an outreach worker, the participant and the trusted sources would identify the type of business and discuss the possibility of executing the plan. The business started when the trusted sources fund agreed with the proposed business. Second, together with DSWO, which has a programme to support people affected by a chronic disease, started to provide financial or material support (usually in the form of an in-kind grant, for example a goat) to people affected by leprosy. Third, also in partnership with DSWO the SARI team provided skills training for income generation (e.g., sewing, handicrafts, making brooms, electronics).
Factors for sustainability, such as embedding the intervention in the local context, were in place. In addition, we observed a large interest in, and demand for, the socio-economic intervention from the start. Below we describe the characteristics of the participants.
The study was approved by the ethics committee of Atma Jaya University in Jakarta No.1586/III/LPPM-PM.10.05/2010, and permit from Indonesia Ministry of Health. Informed written consent was obtained from all study participants. The study team guaranteed the confidentiality of the data they provided.
Microcredit projects are becoming ever more common in Indonesia. Various organizations such as the government (e.g., Bank Negara Indonesia, Bank Rakyat Indonesia, Bank Mandiri), private formal financial institutions (e.g., KOMIDA), faith-based organizations (e.g., Zakat centre, Rumah Zakat) and non-governmental organizations (NGOs) provide microcredit for small-scale businesses [53
]. Marginalized people such as those affected by leprosy or with a disability are often not
seen as potential clients by formal and informal credit systems [55
]. There are a few examples of a specific focus on the most vulnerable social groups (e.g., poorest of the poor, persons with disabilities), but these are exceptional and the programmes are facing serious challenges. In general, many vulnerable groups experience constraints on obtaining credit [53
]. This study was set up to realize a ‘proof of principle’ that people affected by leprosy-related stigma could under certain conditions be reliable clients of a microcredit programme.
Rather than one uniform intervention, the SARI SED intervention comprises a portfolio of activities. Two microcredit schemes and other socio-economic activities were implemented. Both schemes tried to deal with the barriers (e.g., lack of knowledge about leprosy) [19
] and opened up opportunities to improve socio-economic status and facilitate a social transformation of people affected by leprosy. The different activities respond to their various needs and are aligned with the locally available resources and programmes, enhancing their sustainability. A strong point is that it that the SED intervention is still running three years after the project ended. Currently, KOMIDA is still recruiting for micro-credits—though to our knowledge not very actively—people with disability and people affected by leprosy. Similarly, the DPO also managed to maintain their micro-credit and related activities. The skills of the DPO personnel have improved substantially over time. Good networking of the DPO with local stakeholders continued and has resulted in various activities for people affected leprosy and people with disability, Districts Social Welfare Office still provide support for grant and material such as tolls and life stock. At the higher level, MOH have commitment to reduce stigma towards people affected by leprosy through national campaign, such as national leprosy day campaign. This condition is accordance to Lockwood et al. general sustainability index of intervention: continues services provision, growing districts local government and National commitment [56
The main purpose of the SED intervention was to improve incomes and reduce stigma and its impacts, such as constrained participation and a lower quality of life. This study confirmed the findings of Ebenso et al. [11
], Velema et al. [20
] and Wagner et al. [57
] of an effect of SED on socio-economic status. Leprosy-related stigma has been studied in depth, but how to reduce it has received less attention [35
]. Velema et al. [20
] undertook a literature review in 2008 and found seven programmes that provided socio-economic support to people affected by leprosy [20
]. These SED interventions aim to improve socio-economic status mainly through promoting self-employment (e.g., tailoring, cycle repairs). Velema et al.’s review suggests that a well-structured socio-economic intervention might enable persons affected by leprosy to become self-employed, be better off and even self-supporting. Similarly, the median income of SED participants rose more than in the control area, proving that the intervention could improve their socio-economic status.
The intervention described in this study indicates that SED can help to reduce stigma and participation restrictions and improve the quality of life. Stigma was reduced both in the intervention and the control areas, but mean differences were higher in the former. Restrictions on participation restriction declined in both areas, but was significant in the intervention area but not in the control area. The quality of life of people affected in intervention area was significantly improved, which is a promising result since it declined in the control area. We believe there are two explanations for the observed positive changes in the control areas. First is that the interventions implemented in the sub-districts were intensive and prolonged (over a 2-year period), so a spill-over effect into the sub-districts were interspersed between the interventions areas is quite possible. The second is that the control area subjects were also visited and interviewed twice (baseline and end line) and this in itself may have influenced their outcomes in a positive direction.
Qualitative data also shows that there is often a change in the level of stigma, in line with other similar studies: Shumin et al. found clear evidence that loans have positive social and psychological effect on people living with HIV and AIDS [60
]. In India, Gheeta et al. found that an improved socio-economic status improved the quality of life [61
]. Chien found a relationship between self-esteem and quality of life among people with schizophrenia [62
]. A study by Rao et al. among people affected in India illustrated that increased expectation is bound to lead to changes of people’s perception of their quality of life [61
]. Furthermore, the result indicates that people affected by leprosy become more satisfied with their life, have more aspirations for the future, are more aware of their health, access health services, are more involved in decision-making, and experience more recognition and acceptance from people around them. We conclude that these are indicators for a social transformation as defined by Pati [24
The long-term impact of the SED intervention is the network between the different actors. These new collaborations had a positive impact on the access to care and health sector in general. Village leaders and other key person in the community learnt about leprosy (the symptoms and treatment options) through the SED and were now able to refer new potential cases to the health clinic. But there are many more examples that illustrate the enhanced relationships: a village leader who accompanies a potential new case to clinic, a health worker who asks a village leader to drop some medication to a leprosy patient and who without hesitation agrees to do this, a village leader who encouraged a health worker to come more often to the village to offer support to the patients. These gestures and actions might seem small, but can mean a lot to individuals affected by a stigmatized condition. Future studies could study the effects on the access to care more systematically.
What is needed to convince organisations that already provide microcredit for small-scale businesses to include people with leprosy or with other stigmatized conditions in their programmes? Based on the experiences of this study we argue that the following three aspects are key. First, time to build relationships. The process of developing and implementing the SED intervention, incorporating views, expectations of the persons affected by leprosy and establishing meaningful collaboration with the DHO, DSWO and other organizations took time. This was necessary to create a sustainable intervention that was embedded in the local context. Second, commitment, all organizations were committed to the cause, inclusion of disempowered and marginalized individuals was part of their vision or mission. Third, knowledge about the condition and about the causes and consequences of stigma among the staff and others involved was key.
The main limitation of this study is that it has some characteristics of a pilot, although it was not set up that way. The number of SED participants within our cohort (only 29 whereas 66 persons affected by leprosy accessed microcredit) was, for instance, lower than expected and needed to draw firm conclusions. SED was offered to all persons affected by leprosy in the study area (also newly diagnosed), but we realized too late that many (37) were not part of the baseline study. For the quantitative evaluation it was not possible to completely disentangle the effects of SED alone from that of SED combined with counselling. Among the SED participants there were less males compared to the controls and the ‘Counselling Contact’ area and we do not know if this would have any effect on the outcome. We believe that our findings are, nevertheless, important to share with the health community as future SED programs can and should build upon the findings described here to contribute to socio-economic transformation of people affected by leprosy and other marginalized and/or stigmatized groups.