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Essay: Community belonging and HIV-related stigma

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  • Published: 11 September 2022*
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1. Introduction

According to AVERT, “South Africa has the biggest and most high profile HIV epidemic in the world, with an estimated 7.2 million people living with HIV in 2017” (AVERT 2018). South Africa accounts for a third of all new HIV-infections in southern Africa and the year 2017 counted 270,000 new HIV-infections. That year 110,000 South Africans died from AIDS-related illnesses” (AVERT 2018). However, the damage this virus causes is not only physical, but can also do mental harm, which will be of main focus in this research. People living with HIV and AIDS, hereafter referred to as PLWHA, daily experience major emotional difficulties and challenges. The stigma surrounding HIV and AIDS is unfortunately still present and moreover, HIV is often linked to class, race and gender, mostly making black women from less economic developed areas the stereotyped subject of this disease. In South Africa, young women aged 15 to 24 made up 37% of new infections in 2016 (AVERT 2018). Being stigmatized can cause feelings of being an outsider, or being perceived as ‘different’ and therefore as not included within a society or community. This can have negative (social) consequences for those who are concerned. They can be discriminated against, excluded from social structures and “experience status loss that leads to unequal outcomes” (Link and Phelan 2001: 367). Moreover, HIV-related stigma can cause a barrier to treatment and prevention as according to Kalichman et al. (2005) “on a societal level it can undermine public support for social programs to assist people with HIV/AIDS”, and on an individual level it can cause people not to get themselves treated and die (Kalichman et al. 2005: 135). To address this form of (social) inequality, that derives amongst others from this discrimination and stigmatization, I find it relevant to get a more in-depth understanding in what can cause the stigma, what can reduce stigma and what can be done [like social support programmes] for people in order to cope with stigma, for example within a community. Community belonging will be of high relevance in this research as inclusivity, that is being part of a group, can help PLWHA in seeking support and coping with their illness. Moreover, as I will elaborate on further in my theoretical framework, studies in the past have focussed mainly on people that stigmatize rather than on people that are being stigmatized and on HIV-related stigma in relation to individuals, and not in relation to communities (Aggleton and Parker 2003: 15). In my research therefore I focus on the stigmatized interdependent individual as part of a community. I will conduct this research in communities in informal settlements in Cape Town in cooperation with Yabonga, an NGO that helps PLWHA and their families to cope and live with HIV through support programmes.

This research aims to examine the sense of community belonging of community X, that is, what it entails for the residents of the informal settlements [X] in Cape Town whom I have as my research population, and to what extent Yabonga initiatives shape this feeling of being part of a community. Moreover, this research will look at how, and if, prevailing HIV-related stigma in a community affects this sense of community belonging and how, and if, Yabonga with its programmes influences the stigma. Furthermore, by investigating what causes the stigma, what creates the sense of belonging and what are the mechanisms that move back and forth between stigma and belonging as a process, such as for example the intersection of HIV with race, gender and class, the stereotyping of women associated mainly with this disease, the myths around HIV-infection and transmission, the lack of knowledge and the traditional beliefs about the cause of HIV/AIDS, this research tries to give a more in-depth understanding of the relation between community belonging and stigma.

Furthermore, this research tries to explain what it is like being HIV-infected and the meaning of community belonging for the HIV-positive women in the Yabonga programmes through the eyes of Yabonga staff members and what the implications are of being infected with HIV. Using qualitative data I hope to be able to shed light on the interplay between the notion of belonging and the effects/implications of HIV-related stigma on this sense of belonging. Doing so, this research tries to demonstrate the relation between stigma and exclusion and stigma and (in)equality, and with this SDG10: reduced inequality, which in my opinion so far is under-studied but yet very relevant. Within SDG 10 I will particularly focus on targets 10.2 “By 2030, empower and promote the social, economic and political inclusion of all, irrespective of age, sex, disability, race, ethnicity, origin, religion or economic or other status” (UN 2016) and 10.3: “Ensure equal opportunity and reduce inequalities of outcome, including by eliminating discriminatory laws, policies and practices and promoting appropriate legislation, policies and action in this regard” (UN 2016).

This research will be conducted in several informal settlements [X] such as Khayelitsha, Mfuleni, Nyanga, Crossroads and Weltevreden/Phillippi, in Cape Town, South Africa. Additionally, I will conduct my field research within and for Yabonga, an NGO that supports positive change by empowering families affected and infected with HIV/AIDS. “By building partnerships with clinics, schools, NGOs and individuals, Yabonga offers psychosocial intervention to empower children, teenagers and adults to make better choices in life. Yabonga enables children, youth and adults, disadvantaged through socio-economic circumstances, and the impact of HIV, to change their lives for a better future” (Yabonga). Within their programmes, I will focus on the ‘the adult support programme’ and ‘internal staff development programme’ which trains care givers to be agents of change in their communities. These Yabonga care givers/staff members form my direct research population and I will use their testimonies as reference for the community as a whole. This research will be formulated and framed as an evaluation rapport for Yabonga in order to examine how these two Yabonga programmes influence the sense of community belonging and stigma and to help Yabonga understand the meaning of their presence in these communities.

2. Research question & sub-questions

The main research question for this research will be: How do Yabonga initiatives shape the sense of community belonging in community X and how does that help us understand the relation between belonging and (social) stigma?

Community X entails the seven informal settlements of Khayelitsha (Matthew Goniwe, Luvuyo and Kuyasa), Mfuleni, Nyanga, Crossroads and Weltevreden/Phillippi. It is yet to be determined which communities I will choose, however Khayelitsha is definitely going to be the main community in which I will conduct my research.

The sub-questions I formulated will enable me to tackle the research in a more step-by-step manner, and will be answered seen through the eyes of the community staff members of Yabonga (therefore, at the beginning of every question you could imagine the words ‘according to the staff members’). The questions formulated as sub-questions are:

(1) What does belonging entail for the residents of community X?

(2) How can a resident in a community be(come) part of the community of Yabonga?

(3) What role does Yabonga seek to play in the lives of the residents of the community in which Yabonga is active?

(4) How might Yabonga initiatives increase the sense of community belonging?

(5) How might Yabonga initiatives reduce HIV-related stigma?

(6) What forms of stigma do the staff members think the HIV-positive residents experience in their community?

3. Theoretical Framework

3.1 Debates around stigma and HIV-related stigma

In order to research how HIV-related stigma influences the feeling of belonging in informal settlements in Cape Town, I find it very important to first understand stigma itself and the underlying structures and processes that can cause stigma. Therefore, I will draw upon Ervin Goffman (1963) as he could be seen as the pioneer in writing about stigma and I will hereafter use the theories of Link and Phelan (2001) and Aggleton and Parker (2003) to make the connection to my own research, as Aggleton and Parker have written a lot about HIV-related stigma. Furthermore, I find the work of Thornicroft et al. (2007) very relevant for my research in explaining what the factors are that can influence the relation between HIV-related stigma and the sense of community belonging, as Thornicroft et al. (2007) argue that stigma can be seen as an “overarching term that contains three elements: problems of knowledge (ignorance), problems of attitudes (prejudice), and problems of behaviour (discrimination)” (Thornicroft et al. 2007: 192). In this research I will investigate how Yabonga understands these three ‘problems’ and how and if they address/pay attention to this in their programmes.

Ervin Goffman, to conceptualize stigma, used the following definition in his book Stigma: Notes on Management of Spoiled Identity (1963): “stigma is an attribute that is deeply discrediting and that reduces the bearer from a whole and usual person to a tainted, discounted one” (Goffman 1963: 3). According to Goffman, stigma is a process in which the reaction of others towards a person spoils ‘normal’ identity. He argues that a society (or in the case of my research a community) “establishes the means of categorizing persons and the complement of attributes felt to be ordinary and natural for members of each of these categories. Social settings establish the categories of persons likely to be encountered there” (Goffman 1997: 203). In establishing these categories, people make a distinction between the “virtual social identity” of a person and the “actual social identity” of a person. With ‘the virtual social identity’ of a person Goffman means the first assumptions and impressions we have when we encounter an individual, that is, the assumed beliefs we create in our minds concerning that individual. The assumptions and assumed beliefs the individual actually has, or as Goffman states “proves to possess”, he calls ‘the actual social identity’ of a person (Goffman 1963: 2). These processes of defining a person based on their virtual identity can create negative prejudices. In Goffman’s stigma-theory he makes a distinction, some sort of ‘stigma indicator’, between individuals who are being stigmatized as: “the stigmatized, the normal and the wise”. This distinction indicates how people are perceived and feel like they are being perceived and the extent of how they (can) cope with the stigma. However, Aggleton and Parker argue and critique Goffman’s emphasis on stigma as a “discrediting attribute” (Aggleton and Parker 2003: 15) as they state that this has made the concept a static one, and not a dynamic social process. In my research I want to investigate to what extent this distinction can be made for the HIV-positive community members of the informal settlements in Cape Town and what the reasons for these perceptions are and determine whether these perceptions have changed over time, recognizing Aggleton and Parker’s critique on Goffman’s conceptualization of stigma as a static concept.

Apart from Goffman, there are different and multiple definitions given to the concept of stigma, and numerous scholars argue, in collaboration with and against Goffman and each other, on this topic. Aggleton and Parker (2003) argue that the definition linked to the concept of stigma is a problematic one, as the definitions vary, are relatively vague or “seem to refer to something like a dictionary definition- ‘a mark of disgrace’, or some similar aspect such as stereotyping or social rejection” (Aggleton and Parker 2003: 15). Aggleton and Parker, in their theory of conceptualizing stigma, are focused on the so-called ‘third phase of the AIDS epidemic’, formulated in 1987 by Jonathan Mann. The phases Mann described were: first, the phase of the HIV-infection. Second, the phase of the AIDS-epidemic itself and third, the “epidemic of social, cultural, economic and political responses to AIDS” from which HIV-related stigma arises (Aggleton and Parker 2003: 13). However, according to Aggleton and Parker (2003) most of the research done on HIV-related stigma relates to the perceptions and stereotyping of individuals, rather than on the “structural conditions” (Aggleton and Parker 2003: 15) that produce the stigma. Furthermore, what is investigated a lot is the emotional stances people have in regards to HIV-related stigma, such as the beliefs that people ‘deserve’ to get HIV/AIDS. Often, this is shaped by a lack of understanding (Aggleton and Parker 2003: 16 and Thornicroft et al. 2007: 192) and “misinformation concerning the modes of HIV transmission or the risk of infection through everyday social contact” (Herek et. al 2002 in Aggleton and Parker 2003: 15). Moreover, research that has been done tends to have a focus on the attitudes against PLWHA and on the people that stigmatize rather than the other way around, which will be a focus in my research (Aggleton and Parker 2003: 15). Additionally, stigma often is conceived as something an individual does to another individual, however stigma is “not simply the consequence of individual behaviour” (Aggleton and Parker 2003: 17) but is regularly carried out by groups, which will be of main focus in my research. I am going to put my focus on perceived community stigma for the interdependent individual, that is, the individual within a group, in relation to HIV/AIDS.

The work of Link and Phelan (2001) is also relevant for my research to understand the implications of stigmatization. They state that there are five mechanisms that are important in order to get an in-depth understanding of stigma. First, “the labelling of the differences between humans”. Second, the fact that the “dominant cultural beliefs link labelled persons to negative stereotypes”, third, those individuals labelled with negative stereotypes are placed in different ‘boxes’, or categories, so that there is a degree of separation and ‘othering,’ fourth, the labelled individuals are being discriminated against and “experience status loss that leads to unequal outcomes” and finally, stigmatization is completely reliant on “access to social, economic, and political power that allows the identification into distinct categories, and the full execution of disapproval, rejection, exclusion and discrimination” (Link and Phelan 2001: 367).

In regards to the third mechanism defined by Link and Phelan, when a person (or a group) deviates from the prevailing norm, the dominant group will label this person or group as ‘different’. This process of labelling comes from self-other relations that are being formed in the process of identity making or shaping, which is embedded in power relations. The self is defined by ‘others’ and the norm has the power to define the deviant. This self-other relation is also discussed by Yuval-Davis in her article on identity construction in regards to belonging, which I will turn to later on.

Finally, Thornicroft et al. (2007) in their theory on stigma include the fact that “it is sometimes but not always related to a lack of knowledge about the condition that led to stigmatisation” in their definition (Thornicroft et. al 2007: 192). They put more emphasis on the fact that people that stigmatize often have a lack of understanding of the thing/person they are stigmatizing. They argue that stigma often derives from “problems of knowledge (ignorance), problems of attitudes (prejudice), and problems of behaviour (discrimination)” (Thornicroft et al. 2007: 192) and that in order to reduce stigma and change the perceptions and behaviour of people you have to take these factors into account. As already mentioned above, this research will investigate how and if the two Yabonga initiatives that are key in this research address these three ‘problems’ defined by Thornicroft et al.

Building further upon the ‘problems’ defined by Thornicroft et al. (2007), Nira Yuval-Davis (2007) and Logie et al. (2011 and 2013) argue that intersectionality, a term first used by Kimberley Crenshaw, also plays a key role in stigmatization and belonging. According to Yuval-Davis, intersectionality is “inherently additive” and constructs “each discriminatory/disadvantage power vector as autonomous” (Yuval-Davis 2007: 565). Therefore, she argues that the one can reinforce the other, but they also exist independently. Intersecting oppressions, she argues, are “mutually constituted by each other” (Yuval-Davis 2007: 565). In the context of informal settlements in South Africa, taking into account South Africa’s historical context as well, I believe, and predict, that intersectional factors such as gender, class and race are prevalent and need to be taken into account in order to investigate the extent and relation between HIV-related stigma and the sense of community belonging.

3.2 Debates around belonging

Nira Yuval-Davis has written a lot about belonging and the politics of belonging. In her article Belonging and the Politics of Belonging (2006) she states that people have different perceptions on belonging and they can have a sense of belonging in very different ways (Yuval-Davis 2006: 199). She discusses three analytical levels on which belonging is composed: “the first level concerns social locations; the second relates to individuals’ identifications and emotional attachments to various collectivities and groupings; the third relates to ethical and political value systems with which people judge their own and others’ belonging/s” (Yuval-Davis 2006: 199). I will, for my research, focus on all three of these analytical levels –(as I don’t know yet which ones are relevant to the context of my research), in combination with the perceptions of belonging the community members have in order to put in perspective the notion of belonging for these people. That is, I will focus on the informal settlements as social locations, the identification of the individual and the emotional attachment that individual has to a certain group or collective, that is: their community and on the third level, as Yuval-Davis argues that “belonging (…) is not just about social locations and constructions of individual and collective identities and attachments but also about the ways these are valued and judged” (Yuval-Davis 2006: 230). People infected with HIV might have a reduced sense of community belonging due to HIV-related stigma, and this relation will be of main focus in this research.

Yuval-Davis, in her articles on defining and conceptualizing the notion of belonging, draws a lot on John Crowley’s notion of belonging as “dirty work of boundary maintenance”, which creates an ‘us vs. them’ dichotomy, which also is discussed in the work of Link and Phelan (2001). I find it relevant to see to what extent this process of boundary making occurs within the informal settlements in which I am going to conduct my field research as I believe if this “boundary maintenance” is present and visible, this could be closely linked to stigmatization. Moreover, this research will explore how Yabonga addresses this in their programmes. Moreover, Yuval-Davis argues that there are a lot of different approaches to study belonging as a result of identity construction, such as through identity narratives, through dialogue and through performance. I aim to investigate which one of these approaches is most prevalent and therefore relevant in the context I will be researching in order to understand the interplay between belonging and stigma.

In her paper Theorizing identity: beyond the ‘us’ and ‘them’ dichotomy, she addresses a debate in 2008 which surrounded the question whether “macro social categories, such as gender, class, race, ethnicity and so on, were actually that important for people’s identities” (Yuval-Davis 2010: 268). Those in favour argued “when people conducted conversation analysis, people often did not relate to these macro dimensions when they described themselves in everyday life” (Yuval-Davis 2010: 268). I find this very interesting as I think the intersectionality of underlying structures (the things that increase or reduce stigma or the feeling of belonging) of gender, class, race ethnicity and so on, especially when they intersect, do play a key role in defining one’s identity and the sense of belonging. To further look into the intersectionality of gender, race and class in relation to HIV-related stigma and the effect on the sense of community belonging, as already mentioned above, I will besides the work of Yuval-Davis use the work of Logie et al. (2011) and Logie et al. (2013) to determine to what extent these factors are present in this relation.

Wetherell, discussed in Yuval-Davis (2010) states that “identity narratives provide people with a sense of ‘personal order’” (Yuval-Davis 2010: 267), however Yuval-Davis goes against this arguing that identity is never only individual or personal, but rather collective and “collective identity narratives provide a collective sense of order and meaning”(Yuval-Davis 2010: 267), which for me would be of great relevance as I will focus on perceived community belonging and the effect or influence stigma has on this feeling. Looking into the notion and sense of community belonging and what this entails for my research population I will use the identity narrative approach and Crowley’s “dirty work of boundary maintenance” theory in order to determine in what ways stigma (caused by Thornicroft et al.’s (2007) “problems of knowledge (ignorance), problems of attitudes (prejudice), and problems of behaviour (discrimination)”) influences this sense of community belonging.

4. Conceptual scheme

This research aims to shed light on the relation between the sense of community belonging and HIV-related stigma and how Yabonga initiatives influence/effect this. The two Yabonga initiatives are the Adult Support Programme and the Internal Staff Development Programme and the effect on the community is evaluated through the eyes of the community staff members, as because of ethical clearance issues I am only allowed to speak to Yabonga staff members. This research will investigate how and if Yuval-Davis’ three analytical levels of belonging, are visible within the Yabonga programmes and if so, how these are being addressed/implemented. That is, are these levels useful in understanding the programmes and how do these Yabonga initiatives shape the interplay between stigma and belonging. Moreover, the problems of knowledge, attitude and behaviour, defined by Thornicroft et al. (2007), the group dimension instead of the individual dimension on which Aggleton and Parker (2003) focus and the intersectional dimension of Yuval-Davis (2007) and Logie et al. (2011) and (2013) in regards to HIV-related stigma will also be evaluated in relation to and within the Yabonga programmes. Therefore, the main purpose of this research is to offer further understanding of the relation between community belonging and HIV-related stigma and to evaluate the effect/influence of Yabonga on this interplay.

5. Operationalization of major concepts

The following table explains how the main concepts in this research are operationalized. The two main concepts are community belonging and HIV-related stigma. In regards to belonging, this research focuses on belonging to a specific community and therefore the concept is community belonging. Within this category, there are a series of conceptual categories this research will look at, such as the three analytical levels mentioned by Yuval-Davis (2006). First, in regards to the social location of informal settlements, I will look at the type of neighbourhood, the types of housing, whether a house is rented or owned, what facilities are present in the house (is there electricity? Is there running water?) and I will look at the composition/structure of the household itself (one-headed/two-headed household?). I will investigate if and how these variables shape the social location and with that the sense of community belonging. Second, in regards to the individual’s identifications and emotional attachments to various groups, I will look whether there are groupings/collectivities within the community in which the residents feel belonged, such as maybe a religious community, or perhaps a book club or theatre group. Moreover, using the indicators, I will determine what makes them feel part of a specific group and how they identify themselves with that group/collectivity. To investigate the ethical and political systems I will look at the existing social norms in the community, and will look at official law and regulations and how these shape the sense of community belonging. Concerning the Yabonga initivatives, this research will look at how and if these programmes shape (perhaps strengthen or increase?) sense of community belonging and if so, belonging to which communities in particular. The indicators will be the judgments and perceptions of the Yabonga staff members on their sense of community belonging through the conceptual categories and its variables.

In regards to stigma, the conceptual category that will be of main focus in this research will be HIV-related stigma. Herewith, this research will look at intersectionality; how class/race/gender influence the extent and ways of stigmatization and how this is perceived by the interdependent individual in a community. Second, the problems of knowledge, attitude and behaviour, discussed by Thornicroft et al. (2007), will be evaluated and measured to what extent these are present and experienced and how these ‘problems’ eventually shape stigmatization. Third and fourth, the presence and forms of misconceptions on HIV-infection and transmission and the myths/traditional beliefs on HIV-infection and transmission will be evaluated in what ways these shape stigmatization. Concerning the Yabonga initivatives, this research will look at how and if these programmes shape (perhaps reduce?) stigmatization and therefore how effective these programmes are in reducing HIV-related stigma and promoting community inclusion.

Concept / Conceptual categories / Variables (influences) / Indicators

Community belonging Social locations

Individuals’ identifications and emotional attachments to various collectivities and groupings

Ethical and political value systems with which people judge their own and others’ belonging/s”

Yabonga initiatives / Type of neighbourhood

Type of house

Rented/owned

Facilities

Household structure

To what collectivities/groups do they belong?

With whom do they identify themselves?

What makes them feel part of /belonged to that group?

Existing social norms

Laws/regulations

Increased feeling of being part of the community? And if so, which community? The judgments and perceptions of the Yabonga staff members

The judgments and perceptions of the Yabonga staff members

Stigma HIV-related stigma Intersectionality of race/gender/class

Problems of knowledge, attitude and behaviour

Misconceptions on HIV-infection and transmission

Myths/traditional beliefs on HIV-infection and transmission

Yabonga initiatives

The judgments and perceptions of the Yabonga staff members

6. Research location

This research will be conducted in several informal settlements such as Khayelitsha (3 neighbourhoods), Mfuleni, Nyanga, Crossroads and Weltevreden/Phillippi, in Cape Town, South Africa (indicated with the yellow stars at the bottom/middle of the image below). In these informal settlements, these communities, Yabonga has community centers in which I can talk to community members and have my interviews. Whenever I am not in these informal settlements, I will be at the Yabonga office in Wynberg (indicated with the red pinpoint in the image below). My accommodation will be located in the Vredehoek/Gardens area near Green Point (marked with the yellow star in the upper left corner of the image). I will use Uber as a way of transport to and from my apartment to the Yabonga office in Wynberg and will make use of the Yabonga driver to reach the informal settlements.

7. Research Design

7.1 Methodology

This research will have an ethnographic approach in which I will try to gain a holistic understanding of the social context of my research, that is, the perceptions of community belonging for the people within the Yabonga programmes and the extent of experienced HIV-related stigma. The ontology of my research as constructivist is relevant as I believe that the ontology as ‘the study of being’ is related to social processes such as belonging and stigmatization and through interviews I will get a clear understanding of the perceptions of the reality of my research population. In regards to the epistemology of my research, it is written from a pragmatist stance as the emphasis of this research lies on the effect and influence of Yabonga initiatives, that is, the implications and consequences, which are valued in a pragmatist approach, are highly relevant.

7.2 Methods

In conducting participant observation, through semi-structured interviews, focus groups (and perhaps a survey), this qualitative research aims to get an in-depth understanding on the perceptions of PLWHA on community belonging and the presence and experiences of HIV-related stigma for PLWHA in the informal settlements, seen through the eyes of the Yabonga staff members active in these communities. One method I definitely want to include in this research is the mindmap. I will ask my participants to write down all that comes to mind when they think of a specific word, like ‘belonging’. This way, I believe I will get the best interpretation of what associations they have with certain words. I believe, considering the ethical sensitivity of my research topic, qualitative research is very relevant and necessary in order to understand the way and extent these people in these communities experience HIV, and its stigma, and the way they cope with this through support programmes and advocacy sessions provided by Yabonga. By hearing their experiences, through the words of the staff members, I hope to obtain an understanding of the social structure of these communities and the feeling and attachment these people have toward their community.

7.3 Sampling

The sample of this research will be the community staff members of Yabonga and their testimonies will be used as a reference for PLWHA in the communities in which Yabonga is active. I am aware that the testimonies of the Yabonga staff members could be biased to some extent, however this research primarily tries to demonstrate the relation between HIV-related stigma and community belonging in the communities and examines how and to what extent the Yabonga initiatives are involved.

7.4 Unit of analysis

The unit of analysis will be the relation between community belonging and (social) stigma and the role Yabonga plays in this.

7.5 Research limitations and challenges

Two weeks ago I received an e-mail written by the Operations Manager of Orange Babies South Africa (hereafter referred to as OBSA). OBSA is the partner of Yabonga and the e-mail stated that because my research concerns research with humans and vulnerable people and surrounds the topic of HIV, I needed to have ethical clearance before conducting my research. In the document Ethical and Regulatory Requirements for Human Research established by The Human Research Ethics Committee of the Faculty of Health Sciences of the University of Cape Town it is stated that “A South African-based research ethics committee must review the ethical and scientific rigour of all research conducted in South Africa. No research involving humans can begin until a registered research ethics committee has granted approval” (HRCE of the UCT 2003: 3). Because of this ethical clearance, I needed to change my research aim and reframe my research purpose. As this ethical clearance limits the freedom of my research in a way, I cannot talk to people of the community who are not in the Yabonga program and are not staff members. Moreover, I cannot ask people about their HIV-status, but can only direct my interviews to the staff members and this way get an understanding of how the community perceives community belonging, HIV-related stigma and the Yabonga programmes, all seen through the eyes of the community staff members of Yabonga. Therefore, the purpose of my research now is to write an evaluation rapport for Yabonga in order to understand and the relationship between HIV-related stigma and community belonging and to determine to what extent the programmes provide an inclusiveness in a community and how effective the programmes are to increase community belonging and with this perhaps reduce (social) stigma. However, this change of purpose does mean that my thesis will be confidential and cannot be published in the UVA-dare database or another database as such, mentioning names that could be traced back to the NGO or my research communities and its people. Therefore, I will deliver my thesis in duplicate, one regular version for my supervisor and second corrector and one special anonymous version for the database.

7.6 Ethical considerations

Informed consent

For all the interviews, focus groups and other conversations I will conduct with my interviewees I will guarantee confidentiality and anonymity. Participants can choose a name to be included in my transcript or none at all. This will be finalized through consent forms, which I will let my respondents sign before the interview takes place, and I will discuss their rights. I will assure them that whenever they feel uncomfortable answering a question they are not obliged to answer and they can let me know at any time when they feel this way. Moreover, I will let them know that there privacy is kept and they can at any time quit being a respondent for my research.

Participant safety

By assuring my participants anonymity and letting them sign a consent form I guarantee their safety and rights. Moreover, another way to keep my participants safe is that I will only conduct interviews in the Yabonga Centres situated within the informal settlements. These community centres are not open to everyone of the community, but only open to people registered in one of the Yabonga initiatives and to its staff members. I will use a recording device and not my mobile phone in order to assure them safety as well. Moreover, I will transcribe my interviews in the Yabonga Office Wynberg and will not take transcriptions home or travel with them other than back and forth from the Yabonga Office Wynberg to the Yabonga Community Centres with the driver of Yabonga.

Dissemination

During my fieldwork, I will share my preliminary findings with Yabonga, to keep them up to date and so that my local supervisor can help me with my approach, questions or whatever, whenever necessary. Moreover, I will share my preliminary findings with my respondents to verify if they still agree that I use the obtained data. As mentioned above, my thesis will be confidential and cannot be published in the UVA-dare database or another database as such, mentioning names that could be traced back to the NGO or my research communities and its people. Therefore, I will deliver my thesis in duplicate, one regular version for my supervisor and second corrector and one special anonymous version for the database. Moreover, I will also deliver my thesis in report form to Yabonga.

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