African Journal of AIDS Research
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Urban and rural differences in HIV/AIDS stigma in five African countries Joanne R Naidoo , Leana R Uys , Minrie Greeff , William L Holzemer , Lucy Makoae , Priscilla Dlamini , René D Phetlhu , Maureen Chirwa & Thecla Kohi To cite this article: Joanne R Naidoo , Leana R Uys , Minrie Greeff , William L Holzemer , Lucy Makoae , Priscilla Dlamini , René D Phetlhu , Maureen Chirwa & Thecla Kohi (2007) Urban and rural differences in HIV/AIDS stigma in five African countries, African Journal of AIDS Research, 6:1, 17-23, DOI: 10.2989/16085900709490395 To link to this article: http://dx.doi.org/10.2989/16085900709490395
Published online: 11 Nov 2009.
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African Journal of AIDS Research 2007, 6(1): 17–23 Printed in South Africa — All rights reserved
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Urban and rural differences in HIV/AIDS stigma in five African countries Joanne R Naidoo1*, Leana R Uys1, Minrie Greeff 2, William L Holzemer3, Lucy Makoae4, Priscilla Dlamini 5, René D Phetlhu 2, Maureen Chirwa 6 and Thecla Kohi7
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1
School of Nursing, University of KwaZulu-Natal, Desmond Clarence Building, Durban 4041, South Africa; Faculty of Health Sciences, University of KwaZulu-Natal, Oliver Thambo Building, Westville Campus, Durban 4041, South Africa 2 School of Nursing, North-West University, Potchefstroom Campus, Hoffman Street, Potchefstroom, South Africa 3 UCSF School of Nursing, Community Health Systems, 2 Koret Way, Box 0608, San Francisco, CA 94143-0608, USA 4 Faculty of Health Sciences, National University of Lesotho, PO Roma 180, Maseru, Lesotho 5 Faculty of Health Sciences, University of Swaziland, PO Box 369, Mbabane, Swaziland 6 Kamazu College of Nursing, College of Health Sciences, Private Bag 1, Lilongwe, Malawi 7 School of Nursing, College of Health Sciences, Muhimbili University, PO Box 65004, Dar es Salaam, Tanzania * Corresponding author, e-mail: [email protected] Stigma and discrimination have been widely researched, especially within the context of health. In the context of HIV/AIDS, studies have shown that stigma variously impacts on prevention, on accessing treatment, and on care programmes. Decreasing stigma is therefore an important goal in HIV/AIDS programmes. This paper explores whether urban and rural differences existed in reported incidents of HIV stigma from five African countries. A descriptive, qualitative research design was used to explore the experience of HIV stigma of people living with HIV (PLHIV) and nurses. Focus group discussions were held with respondents to capture an emic and etic view of stigma and discrimination. The frequency of reported incidents shows that although comparable numbers of nurses and PLHIV were sampled, the PLHIV from both the urban and rural settings in all five countries conveyed more incidents of received stigma than did the nurses. The results suggest that treatment programmes and support structures need to be designed appropriately for the different settings. Keywords: attitudes, discrimination, people living with HIV, qualitative research, social impact, urban-rural differentials
Introduction Stigma and discrimination have been widely researched, especially within the context of health. In the context of HIV and AIDS, studies have shown that stigma impacts on prevention (Duncan, Harrison, Toldson, Malaka & Sithole, 2005; Smart, 2005), on accessing treatment (Stein, 2003), and on care programmes (Katabira, 1999; Reidpath & Chan, 2005). Hence, ways to decrease stigma have become an important goal of HIV/AIDS programmes. Bunting (1996) stated that any disease has the potential to carry some level of stigma because of people’s desire to separate themselves from illness, disability, disfigurement and death. Gilmore & Somerville (1994) stated that the more rapid the spread of the disease and the greater the uncertainty of how the disease is transmitted, the more stigmatising the response. The authors add that stigma is also strongly related to any disease perceived to be associated with deviant behaviour, when the cause of the illness is viewed as the responsibility of the individual, and when the condition is unalterable, incurable and degenerative. All these factors clearly apply to HIV infection and AIDS illness, leading to high levels of stigmatisation and discrimination.
There is a perception that rural and urban communities differ in their social structure and the experiences of individuals living in those settings. Rural communities are more personal, so that maintaining anonymity and confidentiality is more problematic than in urban communities (Rural Center for AIDS/STD Prevention, 1994). However, since rural societies are still mainly organised along family lines, with families forming the hub of land ownership, child care, illness care and social rituals, families in rural areas remain a strong source of support for individuals. In urban societies, home ownership and a different employment situation favours nuclear families and the use of external resources for child care, illness care and social support. If urban and rural societies differ, the question then arises whether or not HIV stigma manifests differently between the two settings. The aim of this paper is to explore possible urban-rural differences in HIV-related stigma and discrimination in reported incidents from five African countries. Such an exploration is important for planning interventions for prevention, treatment and care, since such programmes
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might need to be specifically structured for an urban or rural population should stigma significantly differ between the two settings. Although there are many definitions of the term rural, Du Plessis, Beshiri & Bollman (2001) suggest that the definition of rural should depend on the questions asked concerning it, but stated that in general rural refers to a population living in towns or areas outside the commuting zone of larger urban centres with a population of 10 000 or more. This general definition has been applied here. The data used for the article are from a larger collaborative study on HIV-related stigma conducted in Lesotho, Malawi, Tanzania, South Africa and Swaziland. Information sources Little research has been done around exploring urban and rural differences in stigma within an African context. For this reason, we began with an extensive literature search conducted on the following databases: PubMed, SABINET, Ebscohost, MEDLINE, AIDSLINE, and CINAHL, using the keywords HIV/AIDS, stigma, discrimination, urban, rural and Africa. Most of the articles retrieved reported on research conducted in rural settings in developed countries, mainly the United States. Literature review Stigma Stigmatisation impacts on various facets of the stigmatised person’s life. A major role that stigma plays is that it separates people, creating a feeling of superiority for those who are not affected by the stigmatising trait and establishing a feeling of shame in or towards the group who is stigmatised (Skinner & Mfcecane, 2004). At a societal level, stigma and discrimination can cripple the social functioning of a community, in that stigma increases people’s vulnerability by creating differences and a social hierarchy that perpetuates social inequalities (Leclerc-Madlala, 2002; Skinner & Mfcecane, 2004). Relf, Mallinson, Pawlowski, Dolan & Dekker (2005) pointed out in a study that examined HIV-related stigma in an urban setting, that stigmatising behaviour is well influenced by society, cultural values and communities, thus suggesting that religion, beliefs, cultural values and different types of communities are factors that contribute to stigma: specifically meaning, who does the stigmatising and the type and intensity of stigma that is rendered. Sowell, Seals, Moneyham, Demi, Cohen & Brakes (1997) found that rural HIV-positive women’s choice to disclose to their family and significant other persons was influenced by their fear of the consequences of disclosure, suggesting that there are multiple dimensions of HIV-related stigma. The findings of an ethnographic study exploring HIV stigma in rural Zimbabwe (Duffy, 2005) identified three forms, and found that each was influenced by religious or moral beliefs: 1) Labelling — when labels are attached to people who are in an advanced stage of HIV infection (symptomatic) and they exhibit certain physical traits such as skin changes and weight loss. These physical manifestations of infection are also considered signs that the person is ‘immoral’ as s/he has likely engaged in activities considered immoral and promiscuous. 2) Blaming and shame — when HIV-positive
Naidoo, Uys, Greeff, Holzemer, Makoae, Dlamini, Phetlhu, Chirwa and Kohi
individuals fear the consequences of disclosing and blame themselves for their status and therefore they feel shame and embarrassment. Accompanying this is also a great deal of self-victimisation, suspicion and isolation from the community. 3) Silence and secrecy — since silence is often a result of the two other forms of stigma, the stigmatised person often isolates themselves and remains silent about their HIV status due to fear of being stigmatised (through observations of others being stigmatised) or because of previous experience of being stigmatised. Urban and rural communities In an article about mental health services in rural areas, Roberts, Battaglia & Epstein (1999) list the barriers to care in rural areas as insufficient access to multidisciplinary clinicians, certain services, innovative therapies, and basic community services such as transportation, electricity and communication. The authors further noted that those barriers to healthcare are compounded by a low level of knowledge about available services in the community. Supporting the contention that rural populations often lack such knowledge is a study by Bassy, Olugbemiga, Ifeyinwa & Ademola (2003) that found that, although there was not a significant difference between urban and rural women in terms of their beliefs and attitudes about HIV and AIDS, rural women had significantly less knowledge about the condition. Similarly, Heckman, Somali, Peters, Walker, OttoSalaj, Galdabin & Kelly (1998) found a range of barriers to HIV/AIDS care in a survey of people living with HIV (PLHIV) in a Midwestern state in the United States; the rural respondents described more problems with transport, a shortage of adequately trained health personnel, and a greater level of stigmatisation than their urban counterparts. People living with mental illness also live with stigma. Rost, Smith & Taylor (1993) found that the lack of anonymity in rural communities can deter residents from seeking professional assistance due to the high risk that they may be labelled negatively if they seek mental health care, whereas such labelling was not associated with use of healthcare in the urban sample. The report by the Rural Center for AIDS/STD Prevention (1994) stated that issues of anonymity and confidentiality are major difficulties in rural areas, and that many people avoid seeking help out of fear that they will be suspected of having HIV and so will be stigmatised and ostracised. The report, which looks at HIV infection and AIDS illness in rural America, states: “In many rural areas there is greater stigma, fear, intolerance, and denial related to AIDS than in urban areas.” This therefore results in fewer support groups being formed and thus perpetuates the cycle of stigma. The patterns of psychological well-being between urban and rural communities are complex. In the United States, Amato & Zuo (1992) found that the psychological well-being of poor African-Americans was higher in rural areas, and that marital status and sex of the individuals also played an important role in feelings of well-being. The authors ascribed these differences to the poor environmental quality of inner-city neighbourhoods and different attitudes towards poverty between urban and rural communities. To understand the social differences between urban and rural communities, Kasarda & Janowitz (1974) compared
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communities in terms of size, density, length of residence, social class and life stage, and social bonds. They found that the effects of population size and density on local friendship, kinship and associational bonds were mixed and not highly significant. However, the urban group had significantly more extensive social ties (relative number of acquaintances and memberships in formal organisations) than their rural counterparts. They also found that a person’s length of stay in a particular community had a strong influence on social connectedness. Breen, Louden, Barratt-Pugh, Rivalland, Rohl, Rhydwen, Llyod and Carr (1994) found that literacy practices in communities were not primarily influenced by the urbanrural setting, but rather by the home setting; that is, certain homes may be more literate, while others are more oral. For instance, the literacy level of a family will influence the use of radio or television and may therefore influence the level of knowledge in the family. Methods Research design We used content analysis to explore the experience of stigma of PLHIV and nurses. Focus group discussions (FGDs) were held with respondents to capture emic or etic views of stigma and discrimination. (Weiss and Ramakrishna [2001] describe the concept of the emic view of a phenomenon as being the insider’s perspective and the etic view as being the outsider’s perspective.) Participants related incidents that they themselves had observed or that they had personally experienced. The participants were also asked to define their understanding of what stigma and discrimination meant (see Uys, Chirwa, Dlamini, Greef, Kohi, Holzemer, Makoae, Naidoo & Phetlhu, 2005); some went further to relate occurrences of perceived self-stigma. Settings The study was conducted in five African countries: Lesotho, Malawi, South Africa, Swaziland and Tanzania. The focus groups in Lesotho and Swaziland involved people from all administrative regions of the country. In South Africa, Malawi and Tanzania, only one geographical area of each was included. The settings in South Africa were the urban area of Potchefstroom and the rural area of Kayakulu, both in the Northwest Province. In Malawi, the setting was Lilongwe; in Tanzania the urban setting was Dar-es-Salaam and the rural setting was Mbeya. Sampling Forty-three focus groups were conducted involving a total of 251 participants (see Table 1). In each country, focus group discussions were conducted with three separate types of groups (PLHIV, nurses, and volunteers/youth group
members) in urban and rural sites. The overall proportions of participants were 44% (n = 111) persons living with HIV, 45% (n = 114) nurses/nurse managers, and 10% (n = 26) volunteers/youth group members. The overall mean age of the participants was 39.9 years. Women constituted 53.1% of the PLHIV, 95.1% of the nurses, and 58% of the volunteers. Of the focus groups, 24 were conducted in urban settings and 19 in rural settings. The sample was approximately equally divided among the five countries. Data collection Participants were invited to come to a central place (either a healthcare facility or a community centre) in either a main city or rural area, where a FGD was to be conducted. One person was selected to act as a go-between at each of the various sites and so to invite potential participants (i.e. nurses and PLHIV) to the discussions. The respondents were reimbursed for transport and lunch was provided. A brief demographic questionnaire was completed by all participants. A FGD guide covered two questions: “How do people you know refer to people living with HIV/AIDS?” and “Can you share an example of stigma or discrimination directed towards a person living with HIV, their family members, or nurses who care for them?” Probes, such as “How did you react to that incident?” or “What were the circumstances or events that led to this incident?”, were used to elicit details of the incidents described. The overall aim of the FGDs with the PLHIV was to facilitate their sharing of incidents describing HIV stigma either experienced or observed; similarly the aim of the FGDs with the nurses was to elicit their recounts of incidents when they had observed stigmatisation against a PLHIV, in an HIV/AIDS unit or in the community, by colleagues or other persons. FGDs were conducted in local languages because all the respondents were more comfortable expressing themselves in their local language. The participants in South Africa variously used Afrikaans, English, Tswana, Sotho and Zulu. The co-researcher was able to communicate with the participants in all these languages. English and Chichewa were used by groups in Malawi, Sotho in Lesotho, Swazi in Swaziland, and Kiswahili in Tanzania. The FGDs were audio recorded, transcribed and translated into English. In South Africa, the FGDs were translated into English during the transcribing process. NvivoTM software was used to code demographic attributes (country, type of participant, gender) and themes. Protection of human subjects The research protocol was approved by the seven institutions involved (i.e. the ethical/human subjects protection committees of the University of California; University of KwaZulu-Natal; Lesotho Ministry of Health and Social Welfare; University of Malawi; North-West University;
Table 1: Participants by type of focus group, gender and age, combining all countries
PLHIV Nurses Total
No. of groups
Men
23 20 43
63 5 68
Women 74 109 183
Total sample 137 114 251
Mean age (years) Urban groups 36.8 42.7 39.9
12 12 24
Rural groups 11 8 19
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University of Swaziland; and Muhimbili University College of Health Sciences). Permission to conduct the study was also obtained from appropriate local and central government authorities. Participants were provided with background information about the study and informed that their participation was voluntary and that they could withdraw at any time. The participants were also assured of confidentiality. Following this explanation, participants each signed a consent form. Data analysis The data from the focus group discussions in the five countries were applied to a qualitative data analysis package NVivo 2.0. The data were analysed to identify and clearly define themes and sub-themes that emerged from the transcripts. The data were then classified into three main categories: received stigma, internal stigma and associated stigma. These categories were adapted from the Siyam’kela Research Report (2003) which describes two categories, external stigma and internal stigma. The authors of that report classified stigma by association as one of the themes in the category external stigma. The number of times an item from each category was mentioned or coded was explored to assess possible generalised differences between the urban and rural focus group discussions. Coding was done using sections of the text that were labelled by the coder as an incident. The unit of analysis was regarded as a narrated event that includes the circumstances surrounding what happened, the actions taken, the feelings and emotions evoked by the respondent, and the results of the incident. A related incident could be as short as several sentences or as long as several paragraphs. Incidents were first coded, and then dimensions of stigma within the incidents were isolated and coded, so that one incident might contain several stigma codes. Nine categories of received stigma and five categories of internal stigma were identified (see Box 1). The frequency of different dimensions of stigma and discrimination described by the urban and rural nurses and PLHIV was analysed in three parts: first, to identify whether there was a significant difference in the number of incidents of stigma described by the urban and rural cohort for each group (Chi-square test); second, to determine whether there were specific differences within each group regarding the three categories of stigma; and third, to explore the actual descriptions of the incidents of stigma described. Note that associated stigma is not discussed in this article, since the reported incidents of associated stigma were few and displayed no significant relationship to, or association between, the urban and rural participants. Results Received stigma Table 2 presents the number of incidents described in the urban and rural discussion groups of PLHIV and nurses for nine dimensions of received stigma (see Box 1 for definitions). When comparing the figures, one should remember that the number of urban and rural PLHIV and the number of urban and rural nurses who participated are more or less the same. A higher incidence of descriptions of a certain
Naidoo, Uys, Greeff, Holzemer, Makoae, Dlamini, Phetlhu, Chirwa and Kohi
form of stigma therefore indicates a type more often experienced/observed, or more intense, or both. The frequency of reported incidents shows that although there is little difference between the numbers of nurses and PLHIV in the sample, the PLHIV from both the urban and rural settings in all five countries expressed incidents of received stigma more often than did the nurses. A Pearson Chi-square test performed on the dimensions of received stigma showed no significant difference between responses from nurses from urban and rural settings (χ2 = 91.36, df = 6, p = 0.652); there was a significant difference between the urban and rural groups of PLHIV concerning the expressed or reported dimensions of received stigma (χ2 = 89.56, df = 2, p = 0.006). The PLHIV in urban areas, from most of the countries, more often described incidents of received stigma (fitting eight of the nine categories; Box 1). This pattern was most evident in Swaziland, Lesotho and Tanzania but not manifest in data for the Malawian and South African discussion groups. The PLHIV in rural areas of Malawi more often described incidents in four of the five categories of received stigma (i.e. neglecting, fear of contagion, labelling and negating). The only category in which that general pattern is inverted is with the category ‘avoiding’, where the PLHIV in three countries described more incidents of received stigma in rural than in urban settings. In South Africa, the PLHIV in urban areas more often described incidents of stigma fitting the category ‘abusing’; and the PLHIV in rural settings more often described incidents fitting the category ‘pestering’. The highest expressed category of received stigma was ‘fear of contagion’, with a total of 280 coded expressions noted among both the urban and rural cohorts of nurses and PLHIV. The stigma category ‘abuse’ ranked the lowest, with 81 coded incidents noted overall. The descriptions from nurses and PLHIV in urban and rural settings, across all nine categories of received stigma, were compared. According to the nurses’ descriptions, stigma in many of the categories manifested differently in urban and rural communities, while the descriptions by PLHIV did not manifest such differences. For instance, in Lesotho, the PLHIV in urban settings described much higher levels of received stigma in five categories (i.e. neglecting, fear of contagion, labelling, pestering, and gossiping) than those in rural settings, while the descriptions of nurses from different settings in Lesotho generally did not differ. In Tanzania and Swaziland, nurses more often related incidents of received stigma occurring in rural settings than in urban settings, while the PLHIV in those countries described more incidents in urban than in rural settings. This was noted in four categories of received stigma: fear of contagion, rejection, pestering, and labelling. The following extracts exemplify instances of the different types of received stigma as related by PLHIV in urban areas: 1) Fear of contagion (mainly described as emanating from the community): ‘Whenever that lady went to the market to buy goods she would be told to put the money on the table so that they don’t touch her hand. She would not be allowed to touch the food items she wanted to buy’ (female, Tanzania).
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Box 1: Categories of stigma identified in the research Received stigma — All types of stigmatising behaviour (e.g. neglecting, fearing contagion, avoiding, rejecting, labelling, pestering, negating, abusing and gossiping) directed towards a person living with HIV, as experienced or described by themselves or others. 1) 2) 3) 4) 5) 6) 7)
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8) 9)
Rejecting: Behaviour that humiliates or breaks off relationships, or that actively separates a PLHIV from groups or meetings. Pestering: Persistent questioning of a PLHIV about his/her behaviour or illnesses. Abusing: Verbal or physical behaviour intended to harm a PLHIV, such as ridicule. Labelling: Attaching an identifying, often negative, term or sign to a PLHIV. Avoiding: Deliberately limiting social contact with a PLHIV. Gossiping: Spreading rumours and talking inappropriately to others about another person and their illness (such as without permission, in an uncaring manner, in public, or ‘behind their back’). Fearing contagion: Behaviour showing a fear of close or direct contact with a PLHIV or things s/he has used, and also offering/giving less care than is expected in a situation. Neglecting: Offering/giving less care than is expected in a situation. Negating: Disallowing access to services and opportunities based on someone’s HIV status.
Internal stigma — Thoughts and behaviours stemming from a person’s own negative perceptions about him/herself, based on his/her own HIV status. 1) Fear of disclosure: Behaviours related to revealing one’s HIV status. 2) Perception of self: A negative evaluation of self, based on one’s HIV status. 3) Self-exclusion and overcompensation: A process by which a person decides not to use certain services due to his/her HIV status and fear of discrimination, and behaviour that shows higher levels of achievement or exaggerated behaviour, to compensate for illness or to lessen stigma. 4) Social withdrawal: When a PLHIV withdraws from a sexual or loving relationship to protect him/herself from discrimination. 5) Revenge and anger: Statements of behaviours indicating a wish for harm to others — usually the people who discriminate against PLHIV.
Table 2: Frequency of nine types of received stigma (see Box 1) related in discussions with urban and rural focus groups Dimension of received stigma: Rejecting Pestering Abuse Labelling Avoiding Gossiping Fear of contagion Neglecting Negating
Urban Nurses PLHIV 30 7 7 20 21 16 59 46 29
84 55 47 61 56 84 96 58 39
Rural Total Nurses PLHIV incidents 24 5 5 24 28 16 82 42 27
17 24 22 30 19 41 43 32 24
155 91 81 135 124 157 280 176 119
2) Labelling (all incidents described in this category stemmed from the community): ‘What annoyed me is when I was called a maleshoane, that means a spotted lady [an insect destructive to leafy green plants]; we are referred to this as the virus has a similar effect on our body as the insect to the plant’ (male, Lesotho). 3) Pestering (expressed mainly as an experience within families): ‘He would not stop there, he would wait and start saying — Don’t you have the virus? At times the family would continue asking him to tell them, what he has done, what practices he was involved in, to have this disease….’ (female, Swaziland). 4) Gossiping (experienced by PLHIV in their family or community of friends or neighbours, often based on physical appearance): ‘When she sees that I have put on weight, she says — Hee!, you have started taking those medications. She even wrote a letter to my mother in the village saying your daughter is taking dangerous drugs, you must get prepared to bury her at any time’ (female, Tanzania).
The type of received stigma described most often in rural areas was ‘avoiding,’ delivered mainly from family members or the community. For instance: ‘They pretend as if I am dead…they do not visit me and have stopped hugging me even when they used to hug and kiss before’ (rural female PLHIV, Swaziland). Internal stigma Table 3 highlights the frequencies of expressed dimensions of internal stigma; the total number of instances described in urban areas was significantly higher than in rural settings (χ2 = 15.066, df = 4, p = 0.005). Overall, the highest-ranked dimension of internal stigma was ‘fear of disclosure,’ as related by both the nurses and the PLHIV. For example: ‘When I am being told that I have HIV, I, the one who has tested to be HIV-positive, feel ashamed when I am told that I am HIV-positive’ (urban female nurse, Tanzania). Among the nurses cohort, there were more frequent reports of internal stigma expressed by the urban groups as compared to the rural groups, with ‘perception of self’ being the most frequently cited dimension (i.e. 37 incidents in urban areas; 17 incidents in rural areas) and the difference between settings in this category was significant (χ2 = 0.113, df = 1, p = 0.045). Among the PLHIV cohort, reports of internal stigma were more frequent in the urban groups than in rural groups. The difference was significant for incidents in the categories ‘perception of self’ (Pearson Chi-square χ2 = 3.990, df = 1, p = 0.046) and ‘social withdrawal’ (χ 2 = 4.019, df = 1, p = 0.045). The next two examples, fitting the categories ‘perception of self’ and ‘social withdrawal’ (or self-exclusion), respectively, were related by urban PLHIV: ‘Fear and self-stigmatisation prevailed with me since I pictured myself as being different from other
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Table 3: Frequency of five dimensions of internal stigma (see Box 1) related in discussions with urban and rural focus groups Dimension of internal stigma:
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Perception of self Social withdrawal Self-exclusion Fear of disclosure Revenge or anger
Urban Nurses PLHIV 37 28 19 97 11
99 57 35 112 12
Rural Total Nurses PLHIV incidents 17 27 16 77 11
51 27 18 86 11
204 139 88 372 45
people. That I do not deserve to live anymore; I am simply waiting to die’ (female, Malawi). ‘I stopped communicating with him. So when we meet these days he only greets me from a distance. We no longer maintain a close relationship as before’ (female, Tanzania). Discussion In general the urban groups described more incidents of stigmatisation and discrimination than did the rural groups. Although there were about 10% fewer rural participants, this alone cannot account for the differences in the number of incidents related, which are often more than three times higher in urban groups. It might be argued that urban discussion groups express themselves more fluently and are more confident with researchers; however, the groups in rural areas were as keen to discuss their experiences and seemed as forthcoming in describing incidents. The results suggest that stigma in all forms is received more often in urban areas than in rural areas, and that PLHIV in urban areas as compared to rural areas are more active in self-stigmatisation. Our findings contradict the results of some other research (such as the Rural Center for AIDS/STD Prevention, 1994; Sliep, Poggenpoel & Gmeiner, 2001; Duffy, 2005), which found HIV-related stigma was relatively more frequent in rural areas. We propose that several factors relating to greater social networks and socio-economic influences can be attributed to such a pattern. The influence of social networks A relatively high number of reported incidents of ‘gossiping’ in an urban setting may be due to the larger social network with which an urban person is likely to be familiar. A study by Kasarda & Janowitz (1974) examining the effects of two models of community attachment affirmed the same: the population size and density of a community significantly affected local friendships and bonds between its residents. The results further suggested that the differential effects associated with living in a large, dense urban community as opposed to a rural community, is that it is larger and more reliant on social networks. The following extract from our research describes stigmatisation through gossiping in an urban setting: ‘I went to visit one of my relatives, and there were neighbours with somebody who was also HIVpositive, and she was telling me a story that this next-door neighbour had just been diagnosed HIV-
positive, and people were interested in the plot. They were interested to know about his diagnosis because they had been seeing this man deteriorating; and that day I was told that they had just learnt that this man was HIV-positive, and I was told that every one of the tenants wanted to move away because there was a man who was HIV-positive within their place’ (urban nurse, Malawi). Kasarda & Janowitz (1974) also noted that in urban groups there is often poor participation and involvement with formal social activities, suggesting that an individual in a large, dense urban community is also able to maintain a high level of anonymity. This can also lead to more ‘pestering’ from the community as it is not always easy to simply ‘label’ an individual based on the services that s/he utilises. Socio-economic influences Socio-economic influences may have contributed to the higher reported incidence of received stigma in urban settings. One facet is poverty. People in urban areas often experience a lower level of poverty as compared with those in rural communities; people in urban areas should benefit from greater access to and utilisation of healthcare services, consequently a HIV-positive status will be less expected of an urban person since they are expected to ‘know better.’ In rural communities there is a general expectation of higher levels of illness due to poverty, and belief that the community will be more marginalised and have less access to healthcare services (Heckman et al., 1998). Rost et al. (1993) found that rural residents labelled people (in this case, with depressive symptoms) more harshly than their urban counterparts, and this was significantly associated with lower utilisation of healthcare services. Amato & Zuo (1992) explored the effect of rural and urban poverty on the psychological well-being of individuals and found higher levels of perceived health in urban poor as opposed to rural poor communities. The influence of literacy level Differing literacy levels in urban and rural communities may have influenced the results of this study. A study by Breen et al. (1994) explored differences in literacy practices between urban and rural communities. The study showed literacy practices occurred in both communities, but families in the urban settings had a higher literacy level due to access to various resources such as libraries and computers that were not similarly available in the rural settings. Moreover, the higher level of literacy in the urban families was associated with various socio-economic and cultural factors; specifically, the results suggested there was greater awareness of social and cultural issues in such families. This may help to explain the greater number of expressed incidents of internal stigma in the urban cohort than the rural cohort in this study. Accordingly, in the urban groups, where there is likely to be greater awareness of social issues (such as the implications of HIV) (Breen et al., 1994), more awareness of health issues (Amato & Zuo, 1992), and better access to healthcare services (Heckman et al., 1998), there was a greater incidence of internal stigma because, as one participant stated, ‘one ought to know better.’
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The finding that there were more frequent descriptions of received stigma reported by PLHIV, predominately from urban settings, is similar to the findings of Duffy (2005), who reported fear of contagion, isolation and self-stigma in study participants. Participants in that study stated that healthcare providers often blamed their clients for their HIV status by making assertions such as ‘Serves you right, why did you acquire it?’ (see Duffy, 2005, p. 16). More frequent reports of received stigma may also relate to the internal stigma experienced. Relf et al. (2005) and Skinner & Mfecane (2004) report that stigma is influenced by various social factors and that the type of stigma received is influenced by these factors. Those authors further stated that the cycle of stigma perpetuates itself, as a person may experience various forms of stigma from society and the stigma received will vary in relation to the beliefs and moral values of that community. Thus, a cumulative result of received stigma is self-stigma which encompasses self-exclusion or isolation, blame, and secrecy and silence about one’s status. The Rural Center for AIDS/STD Prevention (1994) expounds on this cycle: on a societal level, a result of stigmatisation is a lack of anonymity and confidentiality, which effectively reduces access to treatment or participation in prevention strategies, such as voluntary counselling and testing, and support groups. Conclusions Based on the results we recommend conducting further research on HIV-related stigma in specific settings, as the data presented here indicate clear differences in character and intensity of stigma between an urban and rural setting. Accordingly, we recommend that HIV/AIDS treatment programmes and support structures be appropriately designed to suit the two settings. Acknowledgements — This project was supported by a grant from the National Institutes of Health’s Fogarty International Center, R01 TW006395 (PI: Holzemer; Co-PI: Uys), and partially supported by the Health Resources and Services Administration, Global HIV/AIDS Program, US Government.
References Amato, P.R. & Zuo, J. (1992) Rural poverty, urban poverty and psychological well-being. The Sociological Quarterly 33(2), p. 229. Bassey, W.P., Olugbemiga, E., Ifeyinwa, U. & Ademola, O. (2003) An ethnically sensitive and gender-specific HIV/AIDS assessment of African-American women: a comparative study of urban and rural American communities. Family Community Health 26(2), pp. 108–122. Breen, M.P., Louden, W., Barratt-Pugh, C., Rivalland, J., Rohl, M., Rhydwen, M., Llyod, S. & Carr, T. (1994) Literacy in its Place: Literacy Practices in Urban and Rural Communities (Volumes 1 and 2). Canberra, Australia, Department of Employment, Education, Training and Youth Affairs (DEETYA). Bunting, S. (1996) Sources of stigma associated with women with HIV. Advances in Nursing Science 19(2), pp. 64–73. Duffy, L. (2005) Suffering, shame, and silence: the stigma of HIV/AIDS. Journal of the Association of Nurses in AIDS Care 16(1), pp. 13–20.
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Duncan, C., Harrison, M.G., Toldson, I.A., Malaka, D. & Sithole, S. (2005) Social stigma, HIV/AIDS knowledge, and sexual risk: a cross-cultural analysis. Journal of Applied Biobehavioral Research 10(1), pp. 1–26. Du Plessis, V., Beshiri, R. & Bollman, R.D. (2001) Definitions of rural. Rural and Small Town Canada Analysis Bulletin 3(3), pp. 1–17. Gilmore, N. & Somerville, M.A. (1994) Stigmatization, scapegoating and discrimination in sexually transmitted diseases: overcoming ‘them’ and ‘us’. Social Science and Medicine 39(9), pp.1339–1358. Heckman, T.G., Somlai, A.M., Peters, J., Walker, J., Otto-Salaj, L., Galdabin, C.A. & Kelly, J.A. (1998) Barriers to care among persons living with HIV/AIDS in urban and rural areas. AIDS Care 10(3), pp. 365–375. Katabira, E.T. (1999) Epidemiology and treatment of HIV infected patients. International Journal of Infectious Diseases 3(3), pp. 164–167. Kasarda, J. & Janowitz, M. (1974) Community attachment in mass society. American Sociological Review 39, pp. 328–339. Leclerc-Madlala, S. (2002) Youth, HIV/AIDS, youth and the importance of sexual culture and context. Social Dynamics 28(1), pp. 20–41. Reidpath, D.D. & Chan, K.Y. (2005) A method for the quantitative analysis of the layering of HIV-related stigma. AIDS Care 17(4), pp. 425–438. Relf, M.V., Mallinson, R.K., Pawlowski, L., Dolan, K. & Dekker, D. (2005) HIV-related stigma among persons attending an urban HIV clinic. Journal of Multicultural Nursing 11(1), pp. 14–22. Roberts, L.W., Battaglia, J. & Epstein, R. (1999) Frontier ethics: mental health care needs and ethical dilemma in rural communities. Psychiatric Services 50, pp. 497–503. Rost, K., Smith, G.R. & Taylor, J.L. (1993) Rural-urban differences in stigma and the use of care for depressive disorders. Journal of Rural Health 9(1), pp. 57–62. Rural Center for AIDS/STD Prevention (1994) HIV infection and AIDS in rural America. Rural Prevention Report, Spring 1994, 1(1) [online newsletter]. Available at: http://www.indiana.edu/ ~aids/newsletters1.html#contents. Siyam'kela Research Report (2003) Siyam'kela: Measuring HIV/AIDS-related stigma. A report on the fieldwork leading to the development of HIV/AIDS stigma indicators and guidelines. Centre for the Study of AIDS, University of Pretoria, South Africa. Skinner, D. & Mfecane, S. (2004) Stigma, discrimination and the implications for people living with HIV/AIDS in South Africa. Journal of Social Aspects of HIV/AIDS 1(3), pp. 157–164. Sliep, Y., Poggenpoel, M. & Gmeiner, A. (2001) The experience of HIV-reactive patients in rural Malawi, Part 1. Curationis 24(3), pp. 56–65. Smart, T. (2005) HIV stigma, treatment and prevention. HIV & AIDS Treatment in Practice 13, pp. 182–187. Sowell, R.L., Seals, B.F., Moneyham, L., Demi, A., Cohen, L. & Brakes, S. (1997) Quality of life in HIV-infected women in the south-eastern United States. AIDS Care 9(5), pp. 501–512. Stein, J. (2003) HIV/AIDS stigma: the latest dirty secret. African Journal of AIDS Research (AJAR) 2(2), pp. 95–101. Uys, L., Chirwa, M., Dlamini, P., Greeff, M., Kohi, T., Holzemer, W., Makoae, L., Naidoo, J.R. & Phetlhu, R. (2005) ‘Eating plastic’, ‘Winning the Lotto’, ‘Joining WWW’: Descriptions of HIV/AIDS in Africa. Journal of the Association of Nurses in AIDS Care 16(3), pp. 11–21. Weiss, M. & Ramakrishna, J. (2001) Stigma interventions and research for international health. In: Stigma and Global Health: Developing a Research Agenda. Bethesda, Maryland, National Institutes of Health.
ISSN: 1608-5906 (Print) 1727-9445 (Online) Journal homepage: http://www.tandfonline.com/loi/raar20
Urban and rural differences in HIV/AIDS stigma in five African countries Joanne R Naidoo , Leana R Uys , Minrie Greeff , William L Holzemer , Lucy Makoae , Priscilla Dlamini , René D Phetlhu , Maureen Chirwa & Thecla Kohi To cite this article: Joanne R Naidoo , Leana R Uys , Minrie Greeff , William L Holzemer , Lucy Makoae , Priscilla Dlamini , René D Phetlhu , Maureen Chirwa & Thecla Kohi (2007) Urban and rural differences in HIV/AIDS stigma in five African countries, African Journal of AIDS Research, 6:1, 17-23, DOI: 10.2989/16085900709490395 To link to this article: http://dx.doi.org/10.2989/16085900709490395
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African Journal of AIDS Research 2007, 6(1): 17–23 Printed in South Africa — All rights reserved
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Urban and rural differences in HIV/AIDS stigma in five African countries Joanne R Naidoo1*, Leana R Uys1, Minrie Greeff 2, William L Holzemer3, Lucy Makoae4, Priscilla Dlamini 5, René D Phetlhu 2, Maureen Chirwa 6 and Thecla Kohi7
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School of Nursing, University of KwaZulu-Natal, Desmond Clarence Building, Durban 4041, South Africa; Faculty of Health Sciences, University of KwaZulu-Natal, Oliver Thambo Building, Westville Campus, Durban 4041, South Africa 2 School of Nursing, North-West University, Potchefstroom Campus, Hoffman Street, Potchefstroom, South Africa 3 UCSF School of Nursing, Community Health Systems, 2 Koret Way, Box 0608, San Francisco, CA 94143-0608, USA 4 Faculty of Health Sciences, National University of Lesotho, PO Roma 180, Maseru, Lesotho 5 Faculty of Health Sciences, University of Swaziland, PO Box 369, Mbabane, Swaziland 6 Kamazu College of Nursing, College of Health Sciences, Private Bag 1, Lilongwe, Malawi 7 School of Nursing, College of Health Sciences, Muhimbili University, PO Box 65004, Dar es Salaam, Tanzania * Corresponding author, e-mail: [email protected] Stigma and discrimination have been widely researched, especially within the context of health. In the context of HIV/AIDS, studies have shown that stigma variously impacts on prevention, on accessing treatment, and on care programmes. Decreasing stigma is therefore an important goal in HIV/AIDS programmes. This paper explores whether urban and rural differences existed in reported incidents of HIV stigma from five African countries. A descriptive, qualitative research design was used to explore the experience of HIV stigma of people living with HIV (PLHIV) and nurses. Focus group discussions were held with respondents to capture an emic and etic view of stigma and discrimination. The frequency of reported incidents shows that although comparable numbers of nurses and PLHIV were sampled, the PLHIV from both the urban and rural settings in all five countries conveyed more incidents of received stigma than did the nurses. The results suggest that treatment programmes and support structures need to be designed appropriately for the different settings. Keywords: attitudes, discrimination, people living with HIV, qualitative research, social impact, urban-rural differentials
Introduction Stigma and discrimination have been widely researched, especially within the context of health. In the context of HIV and AIDS, studies have shown that stigma impacts on prevention (Duncan, Harrison, Toldson, Malaka & Sithole, 2005; Smart, 2005), on accessing treatment (Stein, 2003), and on care programmes (Katabira, 1999; Reidpath & Chan, 2005). Hence, ways to decrease stigma have become an important goal of HIV/AIDS programmes. Bunting (1996) stated that any disease has the potential to carry some level of stigma because of people’s desire to separate themselves from illness, disability, disfigurement and death. Gilmore & Somerville (1994) stated that the more rapid the spread of the disease and the greater the uncertainty of how the disease is transmitted, the more stigmatising the response. The authors add that stigma is also strongly related to any disease perceived to be associated with deviant behaviour, when the cause of the illness is viewed as the responsibility of the individual, and when the condition is unalterable, incurable and degenerative. All these factors clearly apply to HIV infection and AIDS illness, leading to high levels of stigmatisation and discrimination.
There is a perception that rural and urban communities differ in their social structure and the experiences of individuals living in those settings. Rural communities are more personal, so that maintaining anonymity and confidentiality is more problematic than in urban communities (Rural Center for AIDS/STD Prevention, 1994). However, since rural societies are still mainly organised along family lines, with families forming the hub of land ownership, child care, illness care and social rituals, families in rural areas remain a strong source of support for individuals. In urban societies, home ownership and a different employment situation favours nuclear families and the use of external resources for child care, illness care and social support. If urban and rural societies differ, the question then arises whether or not HIV stigma manifests differently between the two settings. The aim of this paper is to explore possible urban-rural differences in HIV-related stigma and discrimination in reported incidents from five African countries. Such an exploration is important for planning interventions for prevention, treatment and care, since such programmes
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might need to be specifically structured for an urban or rural population should stigma significantly differ between the two settings. Although there are many definitions of the term rural, Du Plessis, Beshiri & Bollman (2001) suggest that the definition of rural should depend on the questions asked concerning it, but stated that in general rural refers to a population living in towns or areas outside the commuting zone of larger urban centres with a population of 10 000 or more. This general definition has been applied here. The data used for the article are from a larger collaborative study on HIV-related stigma conducted in Lesotho, Malawi, Tanzania, South Africa and Swaziland. Information sources Little research has been done around exploring urban and rural differences in stigma within an African context. For this reason, we began with an extensive literature search conducted on the following databases: PubMed, SABINET, Ebscohost, MEDLINE, AIDSLINE, and CINAHL, using the keywords HIV/AIDS, stigma, discrimination, urban, rural and Africa. Most of the articles retrieved reported on research conducted in rural settings in developed countries, mainly the United States. Literature review Stigma Stigmatisation impacts on various facets of the stigmatised person’s life. A major role that stigma plays is that it separates people, creating a feeling of superiority for those who are not affected by the stigmatising trait and establishing a feeling of shame in or towards the group who is stigmatised (Skinner & Mfcecane, 2004). At a societal level, stigma and discrimination can cripple the social functioning of a community, in that stigma increases people’s vulnerability by creating differences and a social hierarchy that perpetuates social inequalities (Leclerc-Madlala, 2002; Skinner & Mfcecane, 2004). Relf, Mallinson, Pawlowski, Dolan & Dekker (2005) pointed out in a study that examined HIV-related stigma in an urban setting, that stigmatising behaviour is well influenced by society, cultural values and communities, thus suggesting that religion, beliefs, cultural values and different types of communities are factors that contribute to stigma: specifically meaning, who does the stigmatising and the type and intensity of stigma that is rendered. Sowell, Seals, Moneyham, Demi, Cohen & Brakes (1997) found that rural HIV-positive women’s choice to disclose to their family and significant other persons was influenced by their fear of the consequences of disclosure, suggesting that there are multiple dimensions of HIV-related stigma. The findings of an ethnographic study exploring HIV stigma in rural Zimbabwe (Duffy, 2005) identified three forms, and found that each was influenced by religious or moral beliefs: 1) Labelling — when labels are attached to people who are in an advanced stage of HIV infection (symptomatic) and they exhibit certain physical traits such as skin changes and weight loss. These physical manifestations of infection are also considered signs that the person is ‘immoral’ as s/he has likely engaged in activities considered immoral and promiscuous. 2) Blaming and shame — when HIV-positive
Naidoo, Uys, Greeff, Holzemer, Makoae, Dlamini, Phetlhu, Chirwa and Kohi
individuals fear the consequences of disclosing and blame themselves for their status and therefore they feel shame and embarrassment. Accompanying this is also a great deal of self-victimisation, suspicion and isolation from the community. 3) Silence and secrecy — since silence is often a result of the two other forms of stigma, the stigmatised person often isolates themselves and remains silent about their HIV status due to fear of being stigmatised (through observations of others being stigmatised) or because of previous experience of being stigmatised. Urban and rural communities In an article about mental health services in rural areas, Roberts, Battaglia & Epstein (1999) list the barriers to care in rural areas as insufficient access to multidisciplinary clinicians, certain services, innovative therapies, and basic community services such as transportation, electricity and communication. The authors further noted that those barriers to healthcare are compounded by a low level of knowledge about available services in the community. Supporting the contention that rural populations often lack such knowledge is a study by Bassy, Olugbemiga, Ifeyinwa & Ademola (2003) that found that, although there was not a significant difference between urban and rural women in terms of their beliefs and attitudes about HIV and AIDS, rural women had significantly less knowledge about the condition. Similarly, Heckman, Somali, Peters, Walker, OttoSalaj, Galdabin & Kelly (1998) found a range of barriers to HIV/AIDS care in a survey of people living with HIV (PLHIV) in a Midwestern state in the United States; the rural respondents described more problems with transport, a shortage of adequately trained health personnel, and a greater level of stigmatisation than their urban counterparts. People living with mental illness also live with stigma. Rost, Smith & Taylor (1993) found that the lack of anonymity in rural communities can deter residents from seeking professional assistance due to the high risk that they may be labelled negatively if they seek mental health care, whereas such labelling was not associated with use of healthcare in the urban sample. The report by the Rural Center for AIDS/STD Prevention (1994) stated that issues of anonymity and confidentiality are major difficulties in rural areas, and that many people avoid seeking help out of fear that they will be suspected of having HIV and so will be stigmatised and ostracised. The report, which looks at HIV infection and AIDS illness in rural America, states: “In many rural areas there is greater stigma, fear, intolerance, and denial related to AIDS than in urban areas.” This therefore results in fewer support groups being formed and thus perpetuates the cycle of stigma. The patterns of psychological well-being between urban and rural communities are complex. In the United States, Amato & Zuo (1992) found that the psychological well-being of poor African-Americans was higher in rural areas, and that marital status and sex of the individuals also played an important role in feelings of well-being. The authors ascribed these differences to the poor environmental quality of inner-city neighbourhoods and different attitudes towards poverty between urban and rural communities. To understand the social differences between urban and rural communities, Kasarda & Janowitz (1974) compared
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communities in terms of size, density, length of residence, social class and life stage, and social bonds. They found that the effects of population size and density on local friendship, kinship and associational bonds were mixed and not highly significant. However, the urban group had significantly more extensive social ties (relative number of acquaintances and memberships in formal organisations) than their rural counterparts. They also found that a person’s length of stay in a particular community had a strong influence on social connectedness. Breen, Louden, Barratt-Pugh, Rivalland, Rohl, Rhydwen, Llyod and Carr (1994) found that literacy practices in communities were not primarily influenced by the urbanrural setting, but rather by the home setting; that is, certain homes may be more literate, while others are more oral. For instance, the literacy level of a family will influence the use of radio or television and may therefore influence the level of knowledge in the family. Methods Research design We used content analysis to explore the experience of stigma of PLHIV and nurses. Focus group discussions (FGDs) were held with respondents to capture emic or etic views of stigma and discrimination. (Weiss and Ramakrishna [2001] describe the concept of the emic view of a phenomenon as being the insider’s perspective and the etic view as being the outsider’s perspective.) Participants related incidents that they themselves had observed or that they had personally experienced. The participants were also asked to define their understanding of what stigma and discrimination meant (see Uys, Chirwa, Dlamini, Greef, Kohi, Holzemer, Makoae, Naidoo & Phetlhu, 2005); some went further to relate occurrences of perceived self-stigma. Settings The study was conducted in five African countries: Lesotho, Malawi, South Africa, Swaziland and Tanzania. The focus groups in Lesotho and Swaziland involved people from all administrative regions of the country. In South Africa, Malawi and Tanzania, only one geographical area of each was included. The settings in South Africa were the urban area of Potchefstroom and the rural area of Kayakulu, both in the Northwest Province. In Malawi, the setting was Lilongwe; in Tanzania the urban setting was Dar-es-Salaam and the rural setting was Mbeya. Sampling Forty-three focus groups were conducted involving a total of 251 participants (see Table 1). In each country, focus group discussions were conducted with three separate types of groups (PLHIV, nurses, and volunteers/youth group
members) in urban and rural sites. The overall proportions of participants were 44% (n = 111) persons living with HIV, 45% (n = 114) nurses/nurse managers, and 10% (n = 26) volunteers/youth group members. The overall mean age of the participants was 39.9 years. Women constituted 53.1% of the PLHIV, 95.1% of the nurses, and 58% of the volunteers. Of the focus groups, 24 were conducted in urban settings and 19 in rural settings. The sample was approximately equally divided among the five countries. Data collection Participants were invited to come to a central place (either a healthcare facility or a community centre) in either a main city or rural area, where a FGD was to be conducted. One person was selected to act as a go-between at each of the various sites and so to invite potential participants (i.e. nurses and PLHIV) to the discussions. The respondents were reimbursed for transport and lunch was provided. A brief demographic questionnaire was completed by all participants. A FGD guide covered two questions: “How do people you know refer to people living with HIV/AIDS?” and “Can you share an example of stigma or discrimination directed towards a person living with HIV, their family members, or nurses who care for them?” Probes, such as “How did you react to that incident?” or “What were the circumstances or events that led to this incident?”, were used to elicit details of the incidents described. The overall aim of the FGDs with the PLHIV was to facilitate their sharing of incidents describing HIV stigma either experienced or observed; similarly the aim of the FGDs with the nurses was to elicit their recounts of incidents when they had observed stigmatisation against a PLHIV, in an HIV/AIDS unit or in the community, by colleagues or other persons. FGDs were conducted in local languages because all the respondents were more comfortable expressing themselves in their local language. The participants in South Africa variously used Afrikaans, English, Tswana, Sotho and Zulu. The co-researcher was able to communicate with the participants in all these languages. English and Chichewa were used by groups in Malawi, Sotho in Lesotho, Swazi in Swaziland, and Kiswahili in Tanzania. The FGDs were audio recorded, transcribed and translated into English. In South Africa, the FGDs were translated into English during the transcribing process. NvivoTM software was used to code demographic attributes (country, type of participant, gender) and themes. Protection of human subjects The research protocol was approved by the seven institutions involved (i.e. the ethical/human subjects protection committees of the University of California; University of KwaZulu-Natal; Lesotho Ministry of Health and Social Welfare; University of Malawi; North-West University;
Table 1: Participants by type of focus group, gender and age, combining all countries
PLHIV Nurses Total
No. of groups
Men
23 20 43
63 5 68
Women 74 109 183
Total sample 137 114 251
Mean age (years) Urban groups 36.8 42.7 39.9
12 12 24
Rural groups 11 8 19
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University of Swaziland; and Muhimbili University College of Health Sciences). Permission to conduct the study was also obtained from appropriate local and central government authorities. Participants were provided with background information about the study and informed that their participation was voluntary and that they could withdraw at any time. The participants were also assured of confidentiality. Following this explanation, participants each signed a consent form. Data analysis The data from the focus group discussions in the five countries were applied to a qualitative data analysis package NVivo 2.0. The data were analysed to identify and clearly define themes and sub-themes that emerged from the transcripts. The data were then classified into three main categories: received stigma, internal stigma and associated stigma. These categories were adapted from the Siyam’kela Research Report (2003) which describes two categories, external stigma and internal stigma. The authors of that report classified stigma by association as one of the themes in the category external stigma. The number of times an item from each category was mentioned or coded was explored to assess possible generalised differences between the urban and rural focus group discussions. Coding was done using sections of the text that were labelled by the coder as an incident. The unit of analysis was regarded as a narrated event that includes the circumstances surrounding what happened, the actions taken, the feelings and emotions evoked by the respondent, and the results of the incident. A related incident could be as short as several sentences or as long as several paragraphs. Incidents were first coded, and then dimensions of stigma within the incidents were isolated and coded, so that one incident might contain several stigma codes. Nine categories of received stigma and five categories of internal stigma were identified (see Box 1). The frequency of different dimensions of stigma and discrimination described by the urban and rural nurses and PLHIV was analysed in three parts: first, to identify whether there was a significant difference in the number of incidents of stigma described by the urban and rural cohort for each group (Chi-square test); second, to determine whether there were specific differences within each group regarding the three categories of stigma; and third, to explore the actual descriptions of the incidents of stigma described. Note that associated stigma is not discussed in this article, since the reported incidents of associated stigma were few and displayed no significant relationship to, or association between, the urban and rural participants. Results Received stigma Table 2 presents the number of incidents described in the urban and rural discussion groups of PLHIV and nurses for nine dimensions of received stigma (see Box 1 for definitions). When comparing the figures, one should remember that the number of urban and rural PLHIV and the number of urban and rural nurses who participated are more or less the same. A higher incidence of descriptions of a certain
Naidoo, Uys, Greeff, Holzemer, Makoae, Dlamini, Phetlhu, Chirwa and Kohi
form of stigma therefore indicates a type more often experienced/observed, or more intense, or both. The frequency of reported incidents shows that although there is little difference between the numbers of nurses and PLHIV in the sample, the PLHIV from both the urban and rural settings in all five countries expressed incidents of received stigma more often than did the nurses. A Pearson Chi-square test performed on the dimensions of received stigma showed no significant difference between responses from nurses from urban and rural settings (χ2 = 91.36, df = 6, p = 0.652); there was a significant difference between the urban and rural groups of PLHIV concerning the expressed or reported dimensions of received stigma (χ2 = 89.56, df = 2, p = 0.006). The PLHIV in urban areas, from most of the countries, more often described incidents of received stigma (fitting eight of the nine categories; Box 1). This pattern was most evident in Swaziland, Lesotho and Tanzania but not manifest in data for the Malawian and South African discussion groups. The PLHIV in rural areas of Malawi more often described incidents in four of the five categories of received stigma (i.e. neglecting, fear of contagion, labelling and negating). The only category in which that general pattern is inverted is with the category ‘avoiding’, where the PLHIV in three countries described more incidents of received stigma in rural than in urban settings. In South Africa, the PLHIV in urban areas more often described incidents of stigma fitting the category ‘abusing’; and the PLHIV in rural settings more often described incidents fitting the category ‘pestering’. The highest expressed category of received stigma was ‘fear of contagion’, with a total of 280 coded expressions noted among both the urban and rural cohorts of nurses and PLHIV. The stigma category ‘abuse’ ranked the lowest, with 81 coded incidents noted overall. The descriptions from nurses and PLHIV in urban and rural settings, across all nine categories of received stigma, were compared. According to the nurses’ descriptions, stigma in many of the categories manifested differently in urban and rural communities, while the descriptions by PLHIV did not manifest such differences. For instance, in Lesotho, the PLHIV in urban settings described much higher levels of received stigma in five categories (i.e. neglecting, fear of contagion, labelling, pestering, and gossiping) than those in rural settings, while the descriptions of nurses from different settings in Lesotho generally did not differ. In Tanzania and Swaziland, nurses more often related incidents of received stigma occurring in rural settings than in urban settings, while the PLHIV in those countries described more incidents in urban than in rural settings. This was noted in four categories of received stigma: fear of contagion, rejection, pestering, and labelling. The following extracts exemplify instances of the different types of received stigma as related by PLHIV in urban areas: 1) Fear of contagion (mainly described as emanating from the community): ‘Whenever that lady went to the market to buy goods she would be told to put the money on the table so that they don’t touch her hand. She would not be allowed to touch the food items she wanted to buy’ (female, Tanzania).
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Box 1: Categories of stigma identified in the research Received stigma — All types of stigmatising behaviour (e.g. neglecting, fearing contagion, avoiding, rejecting, labelling, pestering, negating, abusing and gossiping) directed towards a person living with HIV, as experienced or described by themselves or others. 1) 2) 3) 4) 5) 6) 7)
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8) 9)
Rejecting: Behaviour that humiliates or breaks off relationships, or that actively separates a PLHIV from groups or meetings. Pestering: Persistent questioning of a PLHIV about his/her behaviour or illnesses. Abusing: Verbal or physical behaviour intended to harm a PLHIV, such as ridicule. Labelling: Attaching an identifying, often negative, term or sign to a PLHIV. Avoiding: Deliberately limiting social contact with a PLHIV. Gossiping: Spreading rumours and talking inappropriately to others about another person and their illness (such as without permission, in an uncaring manner, in public, or ‘behind their back’). Fearing contagion: Behaviour showing a fear of close or direct contact with a PLHIV or things s/he has used, and also offering/giving less care than is expected in a situation. Neglecting: Offering/giving less care than is expected in a situation. Negating: Disallowing access to services and opportunities based on someone’s HIV status.
Internal stigma — Thoughts and behaviours stemming from a person’s own negative perceptions about him/herself, based on his/her own HIV status. 1) Fear of disclosure: Behaviours related to revealing one’s HIV status. 2) Perception of self: A negative evaluation of self, based on one’s HIV status. 3) Self-exclusion and overcompensation: A process by which a person decides not to use certain services due to his/her HIV status and fear of discrimination, and behaviour that shows higher levels of achievement or exaggerated behaviour, to compensate for illness or to lessen stigma. 4) Social withdrawal: When a PLHIV withdraws from a sexual or loving relationship to protect him/herself from discrimination. 5) Revenge and anger: Statements of behaviours indicating a wish for harm to others — usually the people who discriminate against PLHIV.
Table 2: Frequency of nine types of received stigma (see Box 1) related in discussions with urban and rural focus groups Dimension of received stigma: Rejecting Pestering Abuse Labelling Avoiding Gossiping Fear of contagion Neglecting Negating
Urban Nurses PLHIV 30 7 7 20 21 16 59 46 29
84 55 47 61 56 84 96 58 39
Rural Total Nurses PLHIV incidents 24 5 5 24 28 16 82 42 27
17 24 22 30 19 41 43 32 24
155 91 81 135 124 157 280 176 119
2) Labelling (all incidents described in this category stemmed from the community): ‘What annoyed me is when I was called a maleshoane, that means a spotted lady [an insect destructive to leafy green plants]; we are referred to this as the virus has a similar effect on our body as the insect to the plant’ (male, Lesotho). 3) Pestering (expressed mainly as an experience within families): ‘He would not stop there, he would wait and start saying — Don’t you have the virus? At times the family would continue asking him to tell them, what he has done, what practices he was involved in, to have this disease….’ (female, Swaziland). 4) Gossiping (experienced by PLHIV in their family or community of friends or neighbours, often based on physical appearance): ‘When she sees that I have put on weight, she says — Hee!, you have started taking those medications. She even wrote a letter to my mother in the village saying your daughter is taking dangerous drugs, you must get prepared to bury her at any time’ (female, Tanzania).
The type of received stigma described most often in rural areas was ‘avoiding,’ delivered mainly from family members or the community. For instance: ‘They pretend as if I am dead…they do not visit me and have stopped hugging me even when they used to hug and kiss before’ (rural female PLHIV, Swaziland). Internal stigma Table 3 highlights the frequencies of expressed dimensions of internal stigma; the total number of instances described in urban areas was significantly higher than in rural settings (χ2 = 15.066, df = 4, p = 0.005). Overall, the highest-ranked dimension of internal stigma was ‘fear of disclosure,’ as related by both the nurses and the PLHIV. For example: ‘When I am being told that I have HIV, I, the one who has tested to be HIV-positive, feel ashamed when I am told that I am HIV-positive’ (urban female nurse, Tanzania). Among the nurses cohort, there were more frequent reports of internal stigma expressed by the urban groups as compared to the rural groups, with ‘perception of self’ being the most frequently cited dimension (i.e. 37 incidents in urban areas; 17 incidents in rural areas) and the difference between settings in this category was significant (χ2 = 0.113, df = 1, p = 0.045). Among the PLHIV cohort, reports of internal stigma were more frequent in the urban groups than in rural groups. The difference was significant for incidents in the categories ‘perception of self’ (Pearson Chi-square χ2 = 3.990, df = 1, p = 0.046) and ‘social withdrawal’ (χ 2 = 4.019, df = 1, p = 0.045). The next two examples, fitting the categories ‘perception of self’ and ‘social withdrawal’ (or self-exclusion), respectively, were related by urban PLHIV: ‘Fear and self-stigmatisation prevailed with me since I pictured myself as being different from other
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Naidoo, Uys, Greeff, Holzemer, Makoae, Dlamini, Phetlhu, Chirwa and Kohi
Table 3: Frequency of five dimensions of internal stigma (see Box 1) related in discussions with urban and rural focus groups Dimension of internal stigma:
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Perception of self Social withdrawal Self-exclusion Fear of disclosure Revenge or anger
Urban Nurses PLHIV 37 28 19 97 11
99 57 35 112 12
Rural Total Nurses PLHIV incidents 17 27 16 77 11
51 27 18 86 11
204 139 88 372 45
people. That I do not deserve to live anymore; I am simply waiting to die’ (female, Malawi). ‘I stopped communicating with him. So when we meet these days he only greets me from a distance. We no longer maintain a close relationship as before’ (female, Tanzania). Discussion In general the urban groups described more incidents of stigmatisation and discrimination than did the rural groups. Although there were about 10% fewer rural participants, this alone cannot account for the differences in the number of incidents related, which are often more than three times higher in urban groups. It might be argued that urban discussion groups express themselves more fluently and are more confident with researchers; however, the groups in rural areas were as keen to discuss their experiences and seemed as forthcoming in describing incidents. The results suggest that stigma in all forms is received more often in urban areas than in rural areas, and that PLHIV in urban areas as compared to rural areas are more active in self-stigmatisation. Our findings contradict the results of some other research (such as the Rural Center for AIDS/STD Prevention, 1994; Sliep, Poggenpoel & Gmeiner, 2001; Duffy, 2005), which found HIV-related stigma was relatively more frequent in rural areas. We propose that several factors relating to greater social networks and socio-economic influences can be attributed to such a pattern. The influence of social networks A relatively high number of reported incidents of ‘gossiping’ in an urban setting may be due to the larger social network with which an urban person is likely to be familiar. A study by Kasarda & Janowitz (1974) examining the effects of two models of community attachment affirmed the same: the population size and density of a community significantly affected local friendships and bonds between its residents. The results further suggested that the differential effects associated with living in a large, dense urban community as opposed to a rural community, is that it is larger and more reliant on social networks. The following extract from our research describes stigmatisation through gossiping in an urban setting: ‘I went to visit one of my relatives, and there were neighbours with somebody who was also HIVpositive, and she was telling me a story that this next-door neighbour had just been diagnosed HIV-
positive, and people were interested in the plot. They were interested to know about his diagnosis because they had been seeing this man deteriorating; and that day I was told that they had just learnt that this man was HIV-positive, and I was told that every one of the tenants wanted to move away because there was a man who was HIV-positive within their place’ (urban nurse, Malawi). Kasarda & Janowitz (1974) also noted that in urban groups there is often poor participation and involvement with formal social activities, suggesting that an individual in a large, dense urban community is also able to maintain a high level of anonymity. This can also lead to more ‘pestering’ from the community as it is not always easy to simply ‘label’ an individual based on the services that s/he utilises. Socio-economic influences Socio-economic influences may have contributed to the higher reported incidence of received stigma in urban settings. One facet is poverty. People in urban areas often experience a lower level of poverty as compared with those in rural communities; people in urban areas should benefit from greater access to and utilisation of healthcare services, consequently a HIV-positive status will be less expected of an urban person since they are expected to ‘know better.’ In rural communities there is a general expectation of higher levels of illness due to poverty, and belief that the community will be more marginalised and have less access to healthcare services (Heckman et al., 1998). Rost et al. (1993) found that rural residents labelled people (in this case, with depressive symptoms) more harshly than their urban counterparts, and this was significantly associated with lower utilisation of healthcare services. Amato & Zuo (1992) explored the effect of rural and urban poverty on the psychological well-being of individuals and found higher levels of perceived health in urban poor as opposed to rural poor communities. The influence of literacy level Differing literacy levels in urban and rural communities may have influenced the results of this study. A study by Breen et al. (1994) explored differences in literacy practices between urban and rural communities. The study showed literacy practices occurred in both communities, but families in the urban settings had a higher literacy level due to access to various resources such as libraries and computers that were not similarly available in the rural settings. Moreover, the higher level of literacy in the urban families was associated with various socio-economic and cultural factors; specifically, the results suggested there was greater awareness of social and cultural issues in such families. This may help to explain the greater number of expressed incidents of internal stigma in the urban cohort than the rural cohort in this study. Accordingly, in the urban groups, where there is likely to be greater awareness of social issues (such as the implications of HIV) (Breen et al., 1994), more awareness of health issues (Amato & Zuo, 1992), and better access to healthcare services (Heckman et al., 1998), there was a greater incidence of internal stigma because, as one participant stated, ‘one ought to know better.’
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African Journal of AIDS Research 2007, 6(1): 17–23
The finding that there were more frequent descriptions of received stigma reported by PLHIV, predominately from urban settings, is similar to the findings of Duffy (2005), who reported fear of contagion, isolation and self-stigma in study participants. Participants in that study stated that healthcare providers often blamed their clients for their HIV status by making assertions such as ‘Serves you right, why did you acquire it?’ (see Duffy, 2005, p. 16). More frequent reports of received stigma may also relate to the internal stigma experienced. Relf et al. (2005) and Skinner & Mfecane (2004) report that stigma is influenced by various social factors and that the type of stigma received is influenced by these factors. Those authors further stated that the cycle of stigma perpetuates itself, as a person may experience various forms of stigma from society and the stigma received will vary in relation to the beliefs and moral values of that community. Thus, a cumulative result of received stigma is self-stigma which encompasses self-exclusion or isolation, blame, and secrecy and silence about one’s status. The Rural Center for AIDS/STD Prevention (1994) expounds on this cycle: on a societal level, a result of stigmatisation is a lack of anonymity and confidentiality, which effectively reduces access to treatment or participation in prevention strategies, such as voluntary counselling and testing, and support groups. Conclusions Based on the results we recommend conducting further research on HIV-related stigma in specific settings, as the data presented here indicate clear differences in character and intensity of stigma between an urban and rural setting. Accordingly, we recommend that HIV/AIDS treatment programmes and support structures be appropriately designed to suit the two settings. Acknowledgements — This project was supported by a grant from the National Institutes of Health’s Fogarty International Center, R01 TW006395 (PI: Holzemer; Co-PI: Uys), and partially supported by the Health Resources and Services Administration, Global HIV/AIDS Program, US Government.
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