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Exploring Cultural Beliefs About ‘‘That Sickness’’: Grandmothers’ Explanations of HIV in an Urban South African Context Claire Penn, PhD Jennifer Watermeyer, PhD The role of culture in community beliefs about HIVis important to understand, given poor adherence to treatment and the failure of prevention programs in some contexts. An exploration of such models may yield important insight into barriers to care, treatmentseeking paths, and intergenerational differences in cultural beliefs and practices. Our study aimed to understand South African grandmothers’ traditional beliefs about HIV. Three focus groups were conducted with 15 grandmothers from different cultural backgrounds in an urban community. Results indicated a variety of cultural explanations for causes, treatments, and prevention strategies. The lack of coherence and fluidity in opinions in this group suggests ways in which grandmothers may have a bridging role in the clinic that may help to validate and alleviate uncertainty, harmonize the voices of medicine and the lifeworld, and provide greater insight into people’s ideas about health and treatment seeking, also known as the healthworld. (Journal of the Association of Nurses in AIDS Care, -, 1-12) Copyright Ó 2014 Association of Nurses in AIDS Care Key words: culture, focus groups, grandmother, HIV, models of causation, traditional beliefs

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he role that culture plays in community beliefs and responses to the HIV epidemic is increasingly recognized as being important to understand, especially in light of poor adherence to antiretroviral therapy (ART) in some contexts and the failure of many prevention programs (Leclerc-Madlala, Simbayi, &

Cloete, 2010). Cultural differences have been acknowledged to play a key role in health care, and communicating with patients across cultural barriers can be particularly challenging for health care professionals (Wright, Sparks, & O’Hair, 2013). Within the South African context, the notion of culture seems particularly fluid, in part due to the country’s linguistic and cultural diversity and the rapidly changing sociocultural and political climate. South Africa provides a rich and complex context in which to study traditional beliefs, given its unique profile of cultural and linguistic diversity, high HIV prevalence rates, and historical apartheid legacies. Postdemocracy, the country has witnessed the rise of significant social inequalities, shifts in political economy, changing migration and movement patterns, increased unemployment rates, and a change in the nature of families and households. These factors have resulted in what Hunter (2010) refers to as the ‘‘embodiment of inequalities’’ (p. 31) and changes in the political economy of sex and the sociocultural construction of relationships. It is widely acknowledged that many people in subSaharan Africa access traditional healing systems, and Claire Penn, PhD, is the Founder of the Health Communication Research Unit and a Professor, Discipline of Speech Pathology and Audiology, University of the Witwatersrand, Johannesburg, South Africa. Jennifer Watermeyer, PhD, is a Senior Lecturer, Department of Speech Pathology and Audiology, University of the Witwatersrand and a Researcher, Health Communication Research Unit, Johannesburg, South Africa.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. -, No. -, -/- 2014, 1-12 http://dx.doi.org/10.1016/j.jana.2014.02.006 Copyright Ó 2014 Association of Nurses in AIDS Care

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patients’ cultural understandings of disease and healing may affect their acceptance of biomedical treatments. In the case of HIV, for example, patients may access both ART and traditional herbal medicines, and this dual consultation practice unfortunately often leads to treatment delay, failure, or nonadherence (Moshabela, Pronyk, Williams, Schneider, & Lurie, 2011). Some research has investigated traditional African beliefs about HIV, and these studies have highlighted models of causation, which often include aspects such as witchcraft or ancestor involvement (Liddell, Barrett, & Bydawell, 2005; van Dyk, 2001). There has also been debate amongst certain cultural groups as to whether HIV is a modern disease or a cultural disease that has existed for thousands of years (Ingstad, Bruun, & Tlou, 1997). However, our understanding of these models of causation remains limited and is often restricted to rural populations. Further, little is known about how models of causation, particularly for pediatric HIV, compare with models of causation for other childhood diseases, especially those that are present from birth. Our study explored traditional beliefs regarding the causes, management, and prevention of HIV through focus groups with grandmothers from a variety of cultural groups in South Africa. Some models of causation suggest that there are many interactions in causative models of illness. Lynch and Medin (2006), for example, referred to literature on different models of causation and the physical versus psychosocial causes of illness. They suggested that illness explanatory frameworks may not be tied to a particular cognitive domain but may incorporate aspects of both biological and psychosocial causes, citing an observation of Farmer and Good (1991) in relation to HIV to highlight this complexity. Liddell et al. (2005) described established indigenous representations of illness and the fact that a clash of biomedical and traditional views about HIV could have hazardous consequences for prevention and treatment. Similarly, van Dyk (2001) suggested different types of African beliefs and customs and the implications for education and prevention in South Africa. There is a danger, however, in categorizing and simplifying traditional beliefs that exist within a complex context where there is rapid shift, assimilation, and negotiation of modern views. An understanding

of just how traditional models of causation interface with modern medical views remains limited. With the migration in South Africa of many people living in rural areas to urban areas, many patients have a type of dual life: they work in the cities, seek treatment in the cities, and then return home once or twice a year to communities where traditional healing is a more common practice. In short, tradition and modernity may come into play in the lives of many individuals seeking treatment for HIV (Breidlid, 2009). Accounts of traditional models of cultural health may be well motivated, but they may serve to reinforce racial and ethnic biases and stereotypes, and to marginalize local and culturally grounded models (Waldron, 2010). Further, they may not clarify the realities of complex sociocultural contexts and the ways in which historical and social determinants such as power imbalances, poverty, and access interact with treatment seeking. This multifaceted conceptualization of health and illness has been described as the healthworld, an extension of Mishler’s description of the lifeworld, which aligns better with cultural notions of health and spirituality as intertwined concepts (Germond & Cochrane, 2010). Lynch and Medin (2006) suggested that a cognitive framework be used to compare causal models of different illnesses both across and within cultures, and within a specific disease to enable greater insight into ideas about this healthworld and about the relationship between mind and body and barriers to treatment-seeking behavior. There is an assumption in much of this work that understanding local discourses may remove some barriers to treatment or at least provide new ways of understanding where and when barriers exist. While there is no question that a multiplicity of voices exists (Thornton, 2010), how they are tapped, especially at the clinic level, remains a challenge for the health care professional. At the heart of this challenge seems to be a search for ecologically valid methods that will allow such multiple voices to emerge. Because of their established and potentially important role in modern society, grandmothers may hold this key.

Grandmothers Grandmothers play a central role and hold a position of great respect in many African cultures (Kasanga &

Penn, Watermeyer / Cultural Beliefs About HIV in Urban South Africa

Lwanga-Lumu, 2007), particularly when it comes to teaching and bringing up the younger generations. Grandparents are often consulted first when there is illness in the family, and they may serve as gatekeepers of knowledge about various illnesses and appropriate treatments (Penn, Watermeyer, MacDonald, & Moabelo, 2010). The paternal grandmother often plays a particularly important role in her son’s relationships and when it comes to decisions about his children. With the onset of the HIV epidemic, grandmothers are increasingly involved in caring for ill and dying children, as well as in raising orphaned grandchildren. Current estimates indicate that there are approximately 1.9 million orphans in South Africa as a result of HIV. Because of the epidemic, many grandmothers face additional burdens, and HIV presents a profound stress on daily life (Boon et al., 2009; Chazan, 2008). They frequently assume the role of primary caregivers and rely heavily on state pensions as the sole source of income (Bock & Johnson, 2008). Some authors have referred to HIV as ‘‘the grandmother’s disease’’ (Wilson & Adamchak, 2001, p. 8), a reflection of gendering of responsibility in a mobile society. As a result, a number of empowerment groups have been established within communities, and grandmothers are increasingly seen as valuable resources–or granny power–in their communities (e.g., Grandmothers Against Poverty and AIDS; Chazan, 2008). Prior research has suggested that successful management of HIV at family and community levels relies heavily on an understanding of such cultural issues (Chu & Selwyn, 2011). In the recent years of ART rollout there have been successes, but many barriers to adherence remain, which at best are only partially understood (Penn, Watermeyer, & Evans, 2011). Grandmothers represent a source of knowledge on issues related to treatment and prevention of HIV in communities. Their ideas are likely to influence not only ideas about the causes of HIV, but also treatment-seeking paths (Chazan, 2008; McDonald & Schatz, 2006). While an understanding of different etiologies may be seen within a biomedical model as essential for adequate management of HIV, this may not, in fact, be a distinction of relevance to communities. Even if traditional views are inconsistent with biomedical models or are incompletely understood by a new generation, they may, nevertheless, be influencing patients’ decisions during medical interactions.

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As part of a larger study designed to explore grandmothers’ beliefs about some common disorders and diseases (see Penn et al., 2010), we used qualitative methods to explore South African traditional beliefs about and explanations of HIV from the perspectives of a group of urban grandmothers. This paper focuses not only on models of causation, but also on explanations of treatment and prevention of HIV.

Methods Setting Data were collected at a privately funded community childcare center in Eldorado Park, Gauteng, South Africa. This area was originally a township created for Coloured people under the apartheid regime, but it is now home to people from diverse backgrounds. ‘‘Coloured people,’’ an established term in South Africa, refers to an ethnic group with mixed ancestry, often including sub-Saharan, European, and Asian ancestry. The area faces high rates of HIV, poverty, unemployment, crime, drug abuse, and domestic and child abuse. The childcare center cared for approximately 200 children infected with or affected by HIV, as well as their caregivers (including about 100 grandmothers, many of whom became primary caregivers as a result of the epidemic and the increasing number of orphans in South Africa). Participants Grandmothers who attend the center were invited to participate in this study through an introductory talk on the project. Written consent was obtained from all participants. A total of 15 grandmothers from different cultural backgrounds (10 African, 5 Coloured) participated in this study. The participants represented a wide cultural and geographic mix reflecting the diversity of the community. We did not obtain biographical information on the grandmothers in order to protect their confidentiality. Ethical clearance was obtained from the University of the Witwatersrand Committee for Human Research. Participants were informed verbally and in writing about the study, in their language of choice. They were offered an opportunity to ask questions about

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the study and, in light of the use of video recording, were assured of confidentiality. Each participant was assigned a number, and responses were thus anonymous. Methods and Procedure Our study followed a qualitative design, and data were collected via focus groups. Given the limits to confidentiality in focus groups and the vulnerability of the population who attended the center, the voluntary nature of the study was emphasized, as was the participant’s right to withdraw from the study at any stage and the fact that she would not be obliged to reveal personal information about her grandchildren or family members. Participants’ names were not recorded. A convenience sampling method was used. Participants were divided into focus groups according to their home language(s). The interviewer (53 years old) spoke Sepedi as her home language and was fluent in Sesotho, English, and Afrikaans (note that the interviewer was not one of the researchers). She was raised in a rural area but had lived in Gauteng for many years and was herself a grandmother. She was trained as a teacher and had experience in running focus groups. We trained the interviewer via mock interviews using the protocol and methods for the focus groups, and appropriate modifications to the protocol were made after the training session. The interviewer conducted three focus groups over 2 days with the grandmothers, in their home languages. In keeping with suggestions for exploratory pilot studies using focus groups (Frankel & Hourigan, 2004), it was decided to conduct three groups at the site. Group 1 had four participants, Group 2 had six participants, and Group 3 had five participants. A semi-structured interview approach was used. At the beginning of each group the participants were invited to speak about their own grandmothers, their views about various illnesses, and generational changes in beliefs. This exercise served a powerful cohesive and ice-breaking function. The question schedule related to issues such as the role of grandmothers in the community, traditional beliefs about the cause(s) of HIV, community responses to HIV, and approaches to prevention and management of HIV.

Each focus group lasted for approximately 90 minutes. We took process notes during the interviews and participants were offered a question-and-answer opportunity after the interviews. The focus groups were video recorded, the recordings were transcribed and translated into English by the interviewer, and the transcriptions were cross-checked for inconsistencies. Thematic analysis (as described by Braun & Clarke, 2006) was used to extract themes from the data. This technique focuses on identifying themes and patterns in the data and then combining them in order to derive an in-depth idea of the participants’ collective responses and experiences. We independently analyzed the data and then discussed findings together, which enabled the development of a framework of categorization of explanations of causality, prevention, and treatment.

Results In this section we describe and illustrate the grandmothers’ thoughts about HIV. We have identified major themes related to the grandmothers’ perspectives about causation of HIV (see Table 1), including behavior and lifestyle-related causes, cultural explanations, the concept of pollution, homosexuality, and ‘‘othering.’’ In addition, we identified themes related to the grandmothers’ perspectives about (a) maintaining a healthy lifestyle, (b) seeking treatment, (c) advice related to sexual practices, and (d) HIV prevention and management strategies (see Table 2). The following sections explore these themes in greater detail, with illustrative extracts from the data. Importantly, we did not seek to ascribe beliefs to specific cultural groups. Participants shared their thoughts on causation, prevention, and management of HIV willingly with the interviewer and amongst themselves. The participants discussed various suggestions and it seemed acceptable that participants should hold differing and sometimes multiple views in this regard. Many of the participants had personal experiences of HIV that they shared with the group, and these experiences appeared to have played a role in shaping their beliefs about causation and treatment. It was clear too that the disease had become part of daily life in the community, and several grandmothers openly shared that they were HIV infected or lived

Penn, Watermeyer / Cultural Beliefs About HIV in Urban South Africa Table 1.

Models of Causation for HIV

Behavior Lifestyle

Alcohol

Cultural

Pollution Abortions Homosexuality Othering (identifying other people as different from oneself; see Johnson et al., 2004)

Dishonesty and loss of trust Children no longer listen to elders Promiscuity and infidelity Unprotected sex with multiple partners Husband brings HIV to you Youth have stronger desires HIV causes sexual desire Drinking too much Frequenting shebeens (a bar or pub), getting drunk, sleeping around Not observing cleansing rituals around menstruation and mourning times (specifically, sexual abstinence) Dirty blood transmitted between people Children have ‘‘backstreet abortions’’ and do not observe cleansing rituals Homosexuality between men Aggravates HIV and changes its nature Comes from Nigerians

Table 2.

Traditional medicines

Delay sex education Abstinence and protection

ART

Discourses and Metaphors of HIV

Religion

Participants often referred to HIV euphemistically, and expressions such as ‘‘that sickness,’’ ‘‘this sick,’’ or ‘‘the illness,’’ appear repeatedly in the data. The grandmothers also made metaphorical references to HIV as ‘‘the disease we are unable to hold by hand’’ and ‘‘it’s like your friend–it will live with you until you die.’’ This practice is not unusual (Niehaus, 2007), and HIV is known to be a disease that is frequently talked about in euphemistic and metaphoric terms, even in health care interactions (Uys et al., 2005). There was some debate regarding whether HIV was a new disease (‘‘nowadays disease’’) or a dormant disease that had existed in communities before the advent of the epidemic (‘‘a disease from long ago,’’ ‘‘the same disease’’). One grandmother explained this further: I think it’s possible that this AIDS has always been around, it’s just that it was not so rife

Cultural Strategies for Preventing and Managing HIV

Maintain a healthy lifestyle

with someone who was infected with HIV and on treatment.

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Take care of yourself (‘‘If you don’t take care of yourself then it means you went in search of the illness’’) Abstain from alcohol Follow the ‘‘old diet’’: avoid foods that induce sexual desire (eg, eggs, cheese, milk, chicken intestines) Eat fruit and drink water Harmsdruppels, lewensessens, wonderkroon (Afrikaans words for old Dutch remedies used during menstruation) Sugar water (mixed with harmsdruppels and swallowed) Gentian violet (drunk in warm water or rubbed on sores) Herbs (bolekalakala, bomakgabenyana) ‘‘What I see is that our children are being misled, they know too much, what we didn’t know when we grew up.’’ ‘‘Cooling off’’ (because HIV causes sexual desire) ‘‘If I know he walks around then I just keep him at bay.’’ Force men to get checked for HIV Use condoms ‘‘English medicine,’’ ‘‘White doctors’’ Medicine is not a cure ‘‘You must drink that medicine till you die.’’ ‘‘Pray for our children’’

Note: ART 5 antiretroviral therapy. Prevention and management strategies have been included together in the table, as it proved difficult to separate them. For example, traditional medicines seemed to be used as both preventative and curative measures.

and the name was not on everyone’s lips as it is today. We use modern medicine now while back then there was a herb of sorts that kept it under control; it was not as tough as it is today. HIV was also frequently compared to diseases such as:  chosuwa (an isiXhosa word for syphilis)  mokaola (a Sotho word for syphilis; Lerotholi, 2011)  thosola (a Setswana word for syphilis; Heald, 2002)  leprosy

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 vuilsiek (an Afrikaans word referring to sores on the genitals; van Wyk, de Wet, & van Heerden, 2008)  mashoa (a Sotho word for a sexually transmitted disease; C-Change, 2009)  boswagadi (a Setswana word referring to a condition that arises when a person fails to observe cleansing rituals or rituals after mourning; Moller, 1997)  makgome (a Sepedi word referring to a condition that arises when a person fails to observe cleansing rituals or rituals after mourning; Walwyn & Maitshotlo, 2010). HIV was also described as ‘‘a cocktail,’’ or a cultural disease mixed with biomedical diseases – ‘‘mashoa mixed with TB, high blood pressure, and sugar diabetes.’’ Causes of HIV Participants discussed various causes of HIV, most of which were based on an implicit understanding of HIV as a sexually transmitted disease. In some cases, participants reported a cumulative effect of several causes that led to HIV (see Table 1). Most commonly, suggested causes related to behavior and, in particular, to promiscuity. Participants showed concern over the risk of acquiring HIV from their husbands – ‘‘your husband, he goes around and you don’t and then he brings it to you’’ – and this concern was usually linked to issues of trust and dishonesty between partners. Great concern was also expressed for the plight of the younger generation, who have, in many cases, neglected cultural practices and the ways of their parents and grandparents. Participants felt that ‘‘children [are] lying to us,’’ ‘‘they no longer follow our culture,’’ and they ‘‘no longer obey the elders,’’ and this rejection of the old ways was seen as leading to promiscuous behavior and contributing to the epidemic. Unprotected sex with multiple partners was often discussed as a potential cause of HIV, and this discussion was linked to the concept of infidelity. Again, participants showed concern for their own generation,

often relating stories of people in the community, as well as concern for the younger generation who they saw as having ‘‘stronger desires than ever before,’’ causing them to ‘‘run around with all sorts of men.’’ The participants felt that HIV caused sexual desire – ‘‘if you have that illness, it makes you just want to be with every man.’’ There was also mention of the woman’s responsibility to look after herself in terms of avoiding promiscuous behavior that might lead to HIV – ‘‘If you don’t look after yourself, the disease is inside you.’’ The topic of pollution was also mentioned frequently, with particular reference to ‘‘dirty blood,’’ which causes ‘‘sores’’ and ‘‘that illness.’’ The idea of pollution causing illness seemed to be a general view toward disease held by many African cultures (van Dyk, 2001). As one participant put it, ‘‘you meet this guy today and tomorrow another one, just like that, the guy carries the dirt from the lady and the lady is busy distributing the dirt all over the world.’’ Dirty blood was also discussed in conjunction with the younger generation’s practice of ‘‘backstreet abortions,’’ which caused internal bleeding and which were usually not followed by an appropriate cleansing ritual, ultimately leading to HIV. Some participants felt that the transmission of dirty blood might well be more significant than promiscuous behavior in terms of causation: ‘‘in the end it’s not about behavior, it’s about blood.’’ Another potential cause of HIV mentioned by the participants involved ignoring cultural rituals. The grandmothers indicated that a person could acquire makgome (which they likened to HIV) by sleeping with a widow or widower, or by not taking herbs to cleanse themselves after the death of a partner. In addition, not observing certain cleansing and abstinence rituals around the time of menstruation might cause HIV: When we grew up, we knew that when you were menstruating you are supposed to finish your days and stay some few more days before you meet your husband or your boyfriend in the same pillow . our children are being misled . they no longer follow our culture . they run all over and meet the guys . she is not yet cleansed and still not ready for the guys

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. when I look at this disease, it is caused by those things and it is increasing because of that. The consumption of alcohol was also frequently discussed as leading to promiscuous behavior. Participants lamented the younger generation’s habit of frequenting shebeens (bars or pubs), getting drunk, and sleeping around, and women were seen as particularly vulnerable in this regard. Alcohol was also considered as something that increased sexual desire and led to promiscuous behavior: ‘‘wine makes your blood warm.’’ Homosexuality between men was also mentioned as a possible cause of HIV. Participants seemed to view this as a new and abhorrent behavior, something that was not practiced in the time of their grandmothers. As one grandmother mentioned, with reference to the existence of HIV before the current epidemic and its subsequent change due to homosexuality, ‘‘Now things have changed so much that one man can sleep with another. Do you see how they are aggravating the dormant disease, making it take on a new life?’’ Although there were some similarities between discussions of the causes of other illnesses and HIV–for example, promiscuity, alcohol abuse, and not following cultural rituals–there were a number of differences too. Discussions about the cause of HIV focused more strongly on sexual behaviors, indicating the probable influence of the media and health education messages. Prevention and Management of HIV Participants mentioned a number of strategies to prevent HIV (see Table 2). These strategies generally referred to maintaining a healthy lifestyle, eating correctly, and abstaining from alcohol, which may cause one to engage in promiscuous behavior. Participants specifically and repeatedly mentioned the need to ‘‘take care of yourself’’ in order to avoid contracting HIV. Participants also discussed the need to eat correctly (‘‘just eat fruit, water’’) and according to cultural traditions (the ‘‘old diet’’). In particular, they said that young girls should not indulge in forbidden foods such as eggs, tripe, animal innards, duck, cheese, or milk, as these were thought to possess aphrodisiac properties and to induce sexual desire.

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In light of the discussion on promiscuity, the grandmothers advocated abstinence as one option for preventing HIV – ‘‘cooling off.’’ For example, with reference to her husband, one participant related that, ‘‘If I know he walks around then I just keep him at bay . or go to the police station and tell them I’m afraid he must go and check himself.’’ Using condoms and insisting on protected sex were also mentioned as prevention strategies. There was some discussion about the fact that children were provided with sex education very early in life, largely as a result of the advent of the HIV epidemic. Participants felt that because children learn about sex too early, this might lead to premature sexual activity, which would put them at risk for contracting HIV. They lamented the fact that ‘‘our children know too much, what we didn’t know when we grew up’’ and they felt that perhaps a delay in sex education was necessary. Participants also suggested strategies for treating HIV (see Table 2), notably traditional cures and ART. However, as pointed out by participants, the younger generation seemed reluctant to use such remedies: ‘‘The ancient people could help themselves . now, our children don’t drink that stuff anymore.’’ Participants also referred to ART, and many were familiar with these drugs through contact with family members on treatment. Some participants indicated their belief in the power of ART – ‘‘ARVs (antiretrovirals) are number one’’ – and others discussed the effectiveness of ART and its power to restore health: I’ve got a cousin . if you see her now you won’t say she has that illness. She’s beautiful, she’s fat, she eats right, and she works, she’s so beautiful you won’t say she has that illness. She takes her medication regularly and she eats right. ART was acknowledged as a biomedical treatment and distinguished from traditional treatments – ‘‘English medicine’’ given by ‘‘White doctors.’’ There was also an understanding of the need to adhere strictly to ART. Participants debated the power of biomedical medicine versus traditional medicine and the issue of cure, often linking this discussion to personal experiences. Importantly, some participants alluded to dual consultation and medical

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pluralism (Moshabela et al., 2011), and it seemed acceptable to access both biomedical and traditional treatments. In the example below, the participant related how she gave her grandson herbs as well as ART, but she denied giving him traditional medicine. They have said [my grandchild] has this disease because the mother died of this disease. I didn’t have proof, they never told us. I’m not sure about that . my grandchild was left by the mother; they said, ‘‘The child is suffering from this sickness,’’ [but] the child is still alive. He had wounds, he is a person who gets sick, and because of his sickness he takes those herbs I cook and give him. When the mother passed away, he was 1 year being sick, with sores . I took him for treatment, I am forced by law, because if you don’t do that, you are in trouble. . Last when I took him, they said the CD count was high . He is 6 years, he gets sick just like any other child, because he is a human being, and he is supposed to get sick . he is taking his ARVs and I give him healthy food. There is no traditional medicine involved. In one example, a participant explained that her daughter had refused ART, preferring instead to take traditional medicines: My daughter told me she had TB but when I looked closely I found that she was hemorrhaging. For about a year she was menstruating continually. I pleaded with her to tell me what was wrong, to no avail. She never went to the clinic until she developed a sore on her leg. Eventually I asked her if she is not infected and she denied it. When I suggested we go see a doctor, she did not want to go to a Western doctor and insisted on a traditional healer. So I told her I did not believe in traditional healers or that they would make her well and that she needs to see a medical doctor; she did not go. I finally forced her to see a doctor and when it came to taking her pills, I had to give them to her myself even though she would spit them out as soon as I turned my back and shove them under her pillow. When they would give her medicine at the hospital, she would decline, saying that she had her own that she was taking

. I brought her some pills from some Western doctor to drink but she refused them. She died. It’s because she chose traditional remedies over Western ones. In summary, our findings suggest both overlaps and contrasts in this group of grandmothers with regard to explanations of causation and treatment. Importantly, however, there was a diversity of opinion in each focus group, and even within individuals, regarding causation and treatment, which seemed acceptable amongst the participants.

Discussion Cultural constructions of illnesses are intricate, fluid, and multidimensional. The results of this study are preliminary, but support the view that understanding the context of HIV–not just the healthworld but also the broader disease context–adds insight to clinic endeavors. The participants offered multiple explanations for HIV, and many of these were not biomedical. Rather, they appeared to be diverse, fluid, dynamic, and inclusive, reflecting what others have found in relation to African frameworks of understanding (Manderson & Smith-Morris, 2010; McDonald & Schatz, 2006; Waldron, 2010), particularly in changing communities. A most striking finding was the fact that diversity of opinion occurred across and within individuals, confirming the work of Ashforth (2005), Niehaus (2007), and Thornton (2010). This implies that it might be helpful to explore cultural beliefs about HIV and other illnesses more regularly in the clinic setting. The grandmothers in our study were well informed about HIV and it would appear that, as caregivers with regular access to services, they had benefited from education programs, publicity, and media. The discussion about prevention issues such as condoms, nutrition, and abstinence, as well as the effectiveness of ART, indicated this. Although the study of culture in relation to HIV is not a particularly novel topic, the fact that there are constant multiple influences on cultural beliefs makes it important to continue to explore cultural issues as the pandemic takes its course. In

Penn, Watermeyer / Cultural Beliefs About HIV in Urban South Africa

addition, qualitative methods produce more detailed understandings of cultural influences and beliefs, which we would argue hold important potential within the clinic setting, although as noted by Leclerc-Madlala (2009), this information is often overlooked in the broader field of HIV policy, education, and prevention. In contrast to prior research (Liddell et al., 2005), witchcraft was not cited as a potential cause of HIV. This may be because of the urban context of testing and the timing of this study (after 6 years of ART rollout) and the fact that, as a group of individuals caring for children with HIV, they had specialized knowledge and exposure. Like McDonald and Schatz (2006), we found a mix of both education and local discourse. The focus group forum and the methods used allowed for a variety of explanations to emerge, which seemed quite acceptable to the participants and, in fact, engendered lively interactions. Our results have many implications for effective service delivery and suggest fruitful ways of addressing barriers to care (both real and perceived). To prevent local discourse from becoming a barrier to treatment, health care professionals need to understand it. Such fluidity of view can be a springboard or an asset, and this has many implications for the way in which medical care needs to happen. Our findings reinforce the need for an individualized and culturally mediated model of care. Particularly in an urban environment, there is a mix of languages and perspectives (reflected clearly in the composition of the group involved in this study). The blending of traditional and biomedical views in the group probably reflected everyday discourse about health issues. If the ‘‘new generation is sucking from the old breast,’’ in the words of one of our participants, it suggests that modern and biomedical perspectives may be influenced by traditional ideas. We are not suggesting that the lack of internal coherence in belief systems was a novel phenomenon, but that contrasts between healthworld and biomedical views, which have been highlighted in prior research, have not necessarily led to changes in clinical situations. As health care professionals, we should not assume a coherent view. On the contrary, our study confirmed a multiplicity of voices and explanations that are likely to confront health care professionals in the clinic. While medical mean-

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ings may be constituted by contrast (Thornton, 2010), contradictions, ambiguities, and pluralities of view exist about illness that should serve as a reminder for health care professionals to check for them in an ecologically valid way.

Conclusions Several implications for training and practice arise from this study, not only for nurses but also for other health care professionals involved in HIV care. Nurses are often the professionals who are closest to patients, both in outpatient and inpatient settings. Willard and Farley (2012), for example, highlighted the crucial work of nurses in HIV care, especially in extended task shifting roles as ART initiators and HIV educators in some contexts. In order to provide effective care to patients and ensure patient satisfaction, positive treatment outcomes, and adherence to treatment recommendations, nurses must adopt a holistic approach that incorporates not only the act of physical care, but also of emotional, spiritual, and social care (Bolderston, Lewis, & Chai, 2010; Widmark-Peterson, von Essen, & Sjoden, 1998). Successful communication with patients is a key element in providing effective care, but is not without its challenges. For example, mismatched agendas in clinical interactions and different priorities held by patients and health care professionals, which may be linked to differences in cultural beliefs and understanding, may have consequences for satisfaction and outcomes in HIV care (Campbell, Scott, Madanhire, Nyamukapa, & Gregson, 2011), making it an important task for nurses and other health care professionals to find ways of minimizing these differences. The potential role of the grandmother in providing insight into factors of relevance to the health care professional was strongly reinforced by the findings of our study. First, the results suggested a range of factors that may very well influence patients’ perceptions about the causes of HIV. Second, patient receptivity to information about prevention and treatment may well be influenced by traditional knowledge and family belief systems about health matters in general, as well as in the manner and sequence in which these topics are approached in health care

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interactions. It is important to ask about these things rather than to assume them. Asking about healthworld factors should not be restricted to topics such as socioeconomic and living conditions, but should extend to an understanding of community ideas about well-being and management of disease in general. While grandmothers are an economically vulnerable group with increasing responsibilities, they are clearly influential both in direct care of children in the community and through the expression of beliefs. There is every indication that such skills can be harnessed very effectively, not only in the community but also in the clinic. An overt acknowledgement of these multiple models of causation and treatment seeking may help patients begin to better understand some of the issues. Writers such as Ashforth (2005), exploring the experience of long-term illness and affliction in contemporary Southern Africa, suggest that uncertainty is heightened and pervasive in the context of competing knowledge systems and multiple authorities, a factor compounded by the influence of poverty, urbanization, and the unregulated nature of the healing market. Grandmothers may serve as a powerful force to acknowledge, validate, and respond to such uncertainty and alleviate it by providing a bridge between the patient and the clinic, thus serving as an agent of wisdom and advice to both patients and health care professionals. A preserved sense of cultural belief in these grandmothers may serve as a resource both for patients and clinical staff, provided an infrastructure is in place for mutual collaboration (Boon et al., 2009). Involving grandmothers in health care teams and forming closer links between nurses and grandmothers might assist in understanding cultural perspectives in the community. This preliminary study was based on a small sample of participants living in a particular context. Future research will enable further exploration of some of the themes raised in our study with different groups in other settings. Nonetheless, the study highlighted the importance of understanding cultural models and explanations and suggested avenues for further research, particularly in the field of HIV prevention and education. The chronic, lifelong nature of HIV care requires a sensitivity to and awareness of cultural, social, and contextual influences.

Key Considerations  The chronic, lifelong nature of HIV care requires a sensitivity to and awareness of cultural, social, and contextual influences.  A range of culturally mediated beliefs and explanations may influence patients’ perceptions about the causes and treatment of HIV and receptivity to information about this illness.  It is important to understand cultural models and explanations about HIV for prevention and education.  Health care professionals, and particularly nurses, should ask patients about healthworld factors, including ideas about well-being and management of disease in general.  Grandmothers may serve as agents of wisdom, advice, and cultural information for patients and health care professionals.

Disclosures The authors report no real or perceived vested interests that relate to this article that could be construed as a conflict of interest.

Acknowledgments This study was funded by grants from the Medical Research Council (MRC) and the South AfricanNetherlands Research Programme on Alternatives for Development (SANPAD). The first author is grateful to the Stellenbosch Institute of Advanced Studies (STIAS) for enabling the writing of this paper. The assistance of Professor Carol MacDonald and Mrs. Colleen Moabelo is gratefully acknowledged. The authors wish to thank the informants as well as the translators and transcribers who worked on the data.

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Exploring cultural beliefs about "that sickness": grandmothers' explanations of HIV in an urban South African context.

The role of culture in community beliefs about HIV is important to understand, given poor adherence to treatment and the failure of prevention program...
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