The Battle Over Control

Abstract

In this discourse analytic article, I discuss the shifting challenges of HIV/AIDS caregiving, as highlighted in previous research, as well as the similarities between past and present challenges as illustrated by the discourses of HIV/AIDS caregivers at a nonprofit organization in South Africa. Using data from interviews with staff members and volunteers, I illustrate how both past and contemporary challenges in HIV/AIDS caregiving relate to an inability to exercise control. Participants’ discourses revealed a contrast whereby, on one hand, they conveyed a sense of being in control over HIV, while, contradictorily, their accounts contained instances of lack or loss of control. I discuss the implications of barriers to control in HIV/AIDS caregiving and the role of communication and interaction research. I conclude by endorsing ongoing, regular assessments of the needs of those undertaking such work in order to identify their evolving needs in light of evolving challenges.

Introduction

In this article, I discuss the challenges of contemporary HIV/AIDS caregiving in a South African context and how these relate to the challenges of such work in the past (see Author’s Note regarding the use of the term HIV/AIDS caregiver). As poor quality of life is considered a threat to health, ¹ it is important to address the needs resulting from the challenges of HIV/AIDS caregiving to ensure an acceptable quality of life for HIV/AIDS caregivers.

It is widely recognized that the challenges that HIV/AIDS caregivers face in the 21st century differ from those faced in the 20th century as a result of antiretroviral treatments (ARTs). ² In the pre-ART era, death and bereavement were considered inevitable ³ and perceived as the central challenges of HIV/AIDS caregiving, often causing HIV/AIDS caregivers a great deal of distress. ^2,4,5 When the AIDS pandemic started some decades ago, the chances of surviving for more than a few years after an HIV infection were modest, ⁶ not least in sub-Saharan Africa, which accounts for the world’s highest prevalence and death rates. ⁷ Due to the past 2 decades’ advancements in drug development, however, ARTs are now more effective in decelerating the advancement of HIV and the rapid progress to AIDS and death. ⁶ In 2011, in spite of 1.7 million people worldwide dying as a result of AIDS (70% of which occurred in Sub-Saharan Africa), the death rates are, nonetheless, on decline. ⁷ Rather, there is now a general consensus that in this post-ART era, and particularly in a sub-Saharan context, death and bereavement have been replaced by adherence as the main challenge of contemporary HIV/AIDS work. ⁸

With such changes in the nature of the work, the function of those working with HIV/AIDS care has also changed. ^3,8 Although previously the work predominantly involved providing palliative care and comfort, contemporary HIV/AIDS work largely involves managing (poor) adherence to ARTs and the frustrations and the potential risk of burnout inherent in such a task when witnessing patients jeopardize their health and lives. ⁸ Unpublished work has highlighted that being unable to control the disease can lead HIV/AIDS caregivers to feel frustrated, powerless, angry, and depressed and leave them in despair. ⁵ Indeed, a prominent notion in the psychotraumatology literature is that events that are unpredictable and uncontrollable result in greater distress and traumatic stress reactions ⁹ ; traumatic events are, thus, thought to be stressful because they breach an individual’s sense of control. ¹⁰ Adherence is crucial in HIV treatment as nonadherence can result in the virus becoming drug resistant, which increases the risk of advancement to AIDS ¹¹ ; however, previous research has indicated that up to half of the HIV-positive individuals in their samples were not adherent to satisfactory levels. ^8,12

In light of this, with this article I aim to, first, illustrate how the discourses of one group of HIV/AIDS caregivers portray the shifting challenges of HIV/AIDS caregiving in South Africa and, second, illustrate the similarities between past and present challenges as both relate to an inability to exercise control.

Methods

Data Collection

The data I present here are from a larger study investigating AIDS-related bereavement among HIV/AIDS caregivers in South Africa. In order to investigate the caregivers in a most natural setting, I spent a period of 12 months with a nonprofit organization in South Africa. At the time, the organization provided care for vulnerable children up to 12 years and their families (thus also including work with adults), in residential and outreach community care programs focusing on 3 main areas: health, education, and psychosocial. Their various services are provided nationally in 6 regions with the headquarters based in Johannesburg, Gauteng. At the time, the organization had approximately 200 employees nationally. Local and international volunteers assist staff in the daily operation of the various programs as well as administration.

During the 12-month period, I participated in various activities of the organization while conducting interviews with the staff and volunteers. I recruited staff members, international volunteers, and local volunteers for the interviews by approaching potential participants and informing them the reason for my being based at the organization (to research AIDS-related bereavement). To identify potential participants, I considered the following factors: their type of work (for example, child care versus administration), length of service, and their competency of the English language since all interviews were conducted in English. Time and practical considerations determined the final number of participants. Upon informing individuals about what participation would involve and their accepting to participate, we agreed on an interview time suitable to both of us. The semistructured interviews were conducted on the organization’s premises and focused on exploring participants’ positive and negative experiences of working with HIV-positive individuals and how they made sense of such experiences. The Psychology Research Ethics Committee at The University of Edinburgh provided ethical approval for this research, and all participants signed a consent form.

I based the final analysis for the full study on interviews conducted with 63 participants (43 female and 1 male staff members, 13 female and 6 male volunteers), ranging in age from 19 to 65 years (mean, 40 years; standard deviation [SD], 8.63), with an average service length of 110 months (ranging from 1 to 347 months, SD = 61), and from 11 different backgrounds (including countries from Africa, Europe, North America, and Australia). Interviews lasted on average 36 minutes (ranging from 11 to 63 minutes, SD = 11.23). All interviews were audiorecorded and thereafter transcribed.

Analytic Technique

The research on HIV/AIDS caregiving benefits from a large qualitative body of literature. This body of literature, however, is dominated by studies employing variations in thematic analysis or grounded theory. ^13,14 For this study, I employed discourse analysis—a relatively rare approach in this area of research (HIV/AIDS caregiving). Epistemologically, discourse analysis assumes that discourse produces, and is produced by, different constructions; that discourse is situated; and that discourse is interconnected with social action. ^{15 –17} Discourse analysts, then, employ various techniques to explore how constructions are managed, that is, how different versions of “reality” are represented in discourse as well as how these realities are constructed to achieve various acts. Although a number of widely employed, well-developed techniques do exist (such as conversation analysis ¹⁸ or critical discourse analysis ¹⁹ ), there is, nonetheless, no one standard method of conducting a discourse analysis; the common guiding principle is that discourse analysts systematically “decode” discourse. ²⁰

The focus of my discourse analysis was on the constructions that participants produced, the rhetorical devices that they employed, and the implications of these. Specifically, in order to illustrate the shifting challenges of HIV/AIDS caregiving in a South African context as well as the similarities between past and present challenges, in this article I focus my analysis on how participants communicated control as well as lack or loss thereof. With my analysis, I aim to illustrate, first, how participants through the use of contrasting as a rhetorical device constructed different realities of the past and the present, with the constructions of the latter aiming to communicate control; and, second, that a further analysis of the interview data, nevertheless, reveals that participants’ accounts inadvertently contain contradictions that implicitly communicate lack or loss of control.

Results

In the first section to follow, I will illustrate how participants conveyed being in control of HIV by attending to how they achieved a contrast through creating a distinction between a past and a present time, through contrasting ways of conceptualizing HIV in the past versus HIV in more recent years, and how these contrasting time periods are bound up with varying degrees of being able to exercise control. Thereafter, in order to illustrate how the past and present challenges of HIV/AIDS caregiving in South Africa similarly relate to an inability to exercise control, I will highlight a contradiction in participants’ discourses: on one hand, they constructed a time period that conveyed a sense of being in control over HIV, while, contradictorily, accounts of lack or loss of control were prevalent in participants’ discourses.

The Past versus the Present

“… and we were now on a disease management phase …”

Although participants conveyed a sense of control over HIV, this was not always the case; participants referred to HIV as initially having been a “killer disease” out of control. The following extracts illustrate how prominent the notion of HIV as a “killer disease” was among the participants (VR is the author/interviewer and Ps are the participants):

Extract 1

VR: What did you know about HIV and AIDS before you started at (the organization)

P1: HIV I knew was a killer disease at that time because as I say I worked for the airline and over the period of years I think I lost 20 friends so I knew about HIV (1.1) before I came to (the organization)

Extract 2

VR: And what did you know about HIV AIDS tuberculosis before you came to (the organization)

P2: Yah before I came to (the organization) I know that AIDS is the killer (who’s) the killer disease of the people

In participants’ discourses, HIV was constructed as something that previously killed everybody. The speakers in both extracts refer to HIV as a killer disease, conveying an image of an exterminator. The additional “of the people” used in Extract 2 suggests that this exterminator does not discriminate and spares no one. For example, in Extract 1 the speaker estimates having lost 20 friends over a period of years, which for the average person may be considered a high number in such a relatively short period of time. The use of “contextual detail,” such as the fairly detailed “20” as opposed to, for example, the more imprecise word “many,” gives the account a more factual nuance. ²¹ Moreover, the same speaker further reports to have known about HIV before coming to the organization, which suggests that she did not simply possess such knowledge because she worked in an HIV environment; HIV existed, and killed, everywhere.

In response to what knowledge about HIV and AIDS they had prior to joining the organization, the following participant finished her answer by saying:

Extract 3

P3: So it like the basic stuff AIDS is just a disease or HIV is-s the start and then AIDS the progressive and then you're gonna die that's like bottom line kind of story

This account suggests that HIV was not only an exterminator but also one that could not be contained or controlled. First, the speaker makes use of a 3-part list ²² when describing the trajectory of the illness: first it starts with HIV, then it progresses to AIDS, and finally you die. The speaker then concludes by referring to this path as “bottom line kind of story.” In other words, there is no other option: the bottom line is that HIV will eventually lead to death and there is no escaping this fate. HIV, however, also exercised control in other respects; for example, participants could be expecting a child to die and therefore say good-bye just to find that the child continued living for several more days. As such, even when one would surrender to HIV, the consequences were not always acted out as anticipated, which further perpetuated one’s lack of control. Thus, participants’ construction of HIV in the past depicted an exterminator that could not be contained or controlled.

In 2003, the organization commenced their ART program that entailed all the HIV-positive children in residential care receiving ARTs. As such, death rates in the residential facility changed radically, although prior to 2003 several deaths occurred each week, today there is barely 1 death per year. Alongside such statistics, a sense of control over HIV has emerged among the organization’s long-standing employees. Although previously HIV killed everyone and could not be contained, death rates are now under control; HIV can now be controlled. In contrast to the previous concept of a killer disease, the following will illustrate a disease management phase:

Extract 4

VR: What recommendations do you have for those who want to come and work with HIV-positive people, so what advice would you give them

P4: Never to fear HIV and AIDS like before because before we used to think yeh it's a very it's a killer disease that you do you wouldn't want to see yourself eh next to somebody with it but now ah-ah they must just like what they're doing their job and the if you have a heart to work with the sick people you don’t y-you won't going to to discriminate yes all the diseases are the same nowadays as long as the-the-the you can be precautious you know how to protect this prevent this from getting to you then it's fine yes

In this extract, the notion of time is being made relevant and a distinction is made between 2 points in time through the use of words such as “before” versus “now” and “nowadays,” intersected with the contrasting word “but.” Whereas the former—before—is labeled as a time of “fear” with further negative features such as the risk of extermination (killer disease) and social discrimination (“you wouldn't want to see yourself eh next to somebody with it”), the latter—nowadays—is labeled as “fine.” HIV has, thus, progressed from being an uncontrollable killer disease to being just like any other disease (“all the diseases are the same”) and people no longer discriminate. The distinction between 2 points in time is further emphasized by using the past tense of the word “use,” which indicates that however negatively they perceived the earlier time point, it is a problem of the past: they used to think that HIV was a killer disease, which implicitly communicates that they no longer do. The concept of time is used similarly by the next participant when asked if she was prepared for her job when first starting at the organization:

Extract 5

P5: Yes I was prepared I was prepared enough but it was difficult for the first few months because children would die wou- they were ill those days there was no ARVs but now it's easy for everybody

VR: Mm

P5: Yah it was difficult like it was 2001 if I'm not mistaking it was difficult those days children was dying like two two at two times a a week yah but now

VR: Mm

P5: Children are growing

This speaker also splits time through the use of “first few months” and “those days” versus “now.” The earlier time is furthermore specified as “2001,” that is, some 10 years prior to the interview. Once again the speaker uses past tense language—it was difficult—indicating that any past difficulties are no longer applicable. Moreover, this time period was difficult because children would die—a couple, every week. In contrast (“but”), presently children are reported to be growing. Growing children is a seemingly standard phenomenon and the use of such a statement conveys a sense that procedures are now standard and under control. This would be in contrast to children not growing, because they die from AIDS, and, thus, the situation is neither standard nor under control.

In response to asking about the most difficult aspect of the job when first arriving at the organization, the next participant initiated their response by discussing the fear of losing the children and then concluded:

Extract 6

P6: Ehm but the fear of losing them to the disease eventually subsided because I learnt that part of the reason they're here is to stop that from happening

The same participant later also referred to death as a “horrible thing”:

Extract 7

VR: Why is it a horrible thing

P6: Well I don't know uhm especially when it comes to a child it's like they didn't even have a life its life it's just negative from every aspect you look at it it's not fair it's not right it's uhm you could I'm sure some would feel guilty that they couldn't stop it from happening

There are 2 brief points I mainly wish to highlight with regard to these extracts. First, by claiming that some may experience guilt as a consequence of having been unable to prevent a child from dying (Extract 7) implies that preventing a child from dying (from HIV/AIDS) is perceived as possible. Second, the participant states that children were partly being admitted to the organization in order to prevent them from dying (Extract 6). Such statements, then, communicate that now HIV is largely manageable and controllable.

In conclusion, by distinguishing a past time from a present time, participants’ discourses achieved a contrast, one whereby HIV in the past was conceptualized as an uncontrollable killer disease, but in present time, due to ARTs, perceived as controllable. Interestingly, what was evident during the 12 months spent with the organization’s members was how the normalizing constructions of HIV (“all the diseases are the same nowadays,” Extract 4) produced a discourse of HIV controllability (“but now it’s easy,” Extract 5; “the fear of losing them to the disease eventually subsided,” Extract 6), which in turn reproduced such constructions—a continual process highlighting that discourse produces, and is produced by, different constructions.

The Continuing Battle

“… you know it’s not nice to lose the fight …”

Despite participants conveying a disease management phase whereby they felt in control over HIV, their accounts also contained instances of lack or loss of control suggesting, first, that the battle with HIV over control is not yet over, and, second, a contradiction to the dominating discourse of control. This section illustrates the contemporary challenges of HIV/AIDS work in a South African context and the similarities of these to past challenges as both relate to an inability to exercise control. The battle over control, then, continues.

Although death rates appear to be under control at the organization’s residential care center, the staff and volunteers were, nonetheless, faced with other challenges (mainly in relation to outreach work) that have the potential to jeopardize their sense of control. The most prominent work-related difficulties were the closely related challenges of denial of one’s potentially positive HIV status and nonadherence to medication. These concepts—denial and nonadherence/adherence—were frequently discussed throughout interviews, implicitly as well as explicitly. In this section, I will discuss these concepts as barriers to control. The next participant had just been discussing cultural issues, such as the employees of the organization adhering to myths or not wanting to disclose their HIV status, and she was asked to elaborate more on how she dealt with such issues. She did so by recounting an experience involving a staff member who had passed away due to AIDS:

Extract 8

P7: She started presenting symptoms that we could all recognise and uhm and our nursing staff uh counseled her and encouraged her to go to be tested which she did she we- she she was well at first she resisted and uhm then eventually she went to uhm she went for a check up and uhm it was then determined that that she had TB but she refused to have an HIV test she was prepared to have other tests but not an HIV test and uhm that was very very difficult uhm for me because I was very frustrated because I just I couldn't understand I mean we would we were trying to help her and she just dug her heels in and she refused and she she got sick after that she got sick very quickly and she left uhm a four- I think it was a 14-year-old daughter

The participant then continued by discussing some of the cultural issues impacting denial and disclosure and finally returned to the 1 staff member she was previously referring to:

Extract 9

P7: This particular staff member when sister (name of employee) spoke to her and she tried to encourage her to be tested she just said no and eventually sister (name of employee) was quite came out quite bluntly with her and said to her you know what we you know that we've treated this and you know that we know a lot about it and the symptoms that you are presenting indicates to us that you have uhm so there is help so why don't you go get tested let's have a look and then so that you can be put onto the regime and she just said no she doesn't have it so that was it was just complete denial she just refused to go

In these extracts, the speaker makes relevant that their concerns regarding HIV were communicated to the staff member, the symptoms were highlighted, and she was encouraged to get tested and treated for HIV. Despite having drawn the staff member’s attention to the possibility of her being infected with a potentially lethal virus, the staff member is, nonetheless, reported as having refused to get tested for HIV (Extract 8). By reporting this scenario, the speaker orients toward the issue of denial: despite being aware of the risk of HIV, the individual in question refuses to address this risk and continues to maintain that the risk is not relevant to her (“she just said no she doesn’t have it,” Extract 9). Eventually, the speaker also explicitly states this (“complete”) denial (Extract 9). Third, the consequence of the staff member’s denial is reported as the staff member having passed away. This is implicit in the speaker reporting that the staff member left a teenage daughter behind (Extract 8).

In relation to this scenario—where the staff member is spoken to about the high likelihood of her being HIV positive, the staff member refusing to get tested or treated, and finally the staff member passing away—the speaker conveys frustration that is attributed to her unsuccessful attempts to help the staff member (Extract 8). Here, help can be conceptualized as a 2-component act: treating the HIV and preventing death. For HIV/AIDS caregivers, being able to control these 2 components is important. As illustrated with previous extracts, HIV is now perceived as controllable, which is also evident in these extracts. For example, the speaker explicitly says “you know that we’ve treated this” (Extract 9). Furthermore, an association is being made between controlling death and controlling treatment: death can be controlled—or at least premature death can be prevented—if treatment can be controlled. After first having accounted for how they were prevented from controlling treatment of the HIV, the speaker presents the death of the staff member as a consequence by using the phrase “after that” (Extract 8). To conclude, the implication is that if only the speaker had been allowed to help by treating the HIV and preventing death, she would have been able to control these matters. As the situation unfolded, the staff member’s denial and lack of adherence acted as barriers to the participant’s sense of control and this was perceived as difficult.

The following participant also speaks of adherence issues when discussing the most difficult aspect of her work:

Extract 10

P8: I find most difficult is the people that they default their treatment yah because I can't to go there early in the morning maybe 7 o'clock if the person is take the tablets 7 o'clock I can't go there 7 o'clock and 7 at night you see sometimes we find that you ask the person you take the pills yes and you find that she's lying

VR: And why is that the most difficult aspect

P8: The most difficult

VR: Why is it when people default why is that difficult for you

P8: Because I-I I want to help but I don't know how because I can't be there early in the morning and I can't be there late in the evening you see so I find this hard to me I am supposed to speak to the family ask one person that they can look after this person because some the mother the parent she's passed away last year December yah last year December because it she was defaulting we try our best but when she saw me he take the pills when ah I'm not in they don't they tell their family they don't want to drink the pills is end up passed away leave three children with no father you see

This participant first makes relevant the problem of nonadherence to medication and reports this as being the most difficult aspect of working with HIV-positive individuals: the lack of adherence to medication is explicitly mentioned by the participant when she speaks of defaulting treatment. It is also implicitly referred to by the participant implying that if she were able to go to a person’s home every morning at 7 o’clock and every evening at 7 o’clock then she could ensure that the medication was taken; that is, she was referring to how ARTs are taken at specific time intervals, for example, every 12 hours. Second, after having given an example of a client who did not adhere with the HIV treatment, the speaker makes a link between nonadherence and death by attributing the death of the client to her nonadherence to medication (“because it she was defaulting”), similar to how the participant in Extracts 8 and 9 attributed death to denial. Furthermore, this participant, too, states having wanted to help and once again by implying that if she could find a way of visiting the client twice a day at the time of medication then she would be able to help, help can be conceptualized as a 2-component act whereby one, first, controls HIV treatment and, consequently, prevents (premature) death. (Please note that many South African vernaculars do not have the words “she” and “he.” Consequently, when speaking English, many individuals use these words interchangeably.)

Finally, the situation is once more conveyed as one associated with feelings of frustration and helplessness. For example, not only does the speaker choose this scenario as an example of the most difficult aspect of her work, but she also reports being lied to, clients defaulting, and passing away despite doing her best and wanting to help but not knowing how to. The participant in this extract has, then, expressed how nonadherence poses a challenge to her as an HIV/AIDS caregiver by preventing her from exercising control over HIV—control perceived as possible in this era of HIV/AIDS caregiving.

Discussion

In summary, on one hand, participants’ discourses illustrated the shifting challenges of HIV/AIDS caregiving in South Africa, as they conveyed a disease management phase whereby they feel in control of HIV, in contrast to having previously perceived it as an uncontrollable killer disease. On the other hand, the implication of participants’ discourses was a contradiction: contemporary challenges of HIV/AIDS caregiving continue to involve a threat to the ability to exercise control. Today, help in an HIV/AIDS context can be conceptualized as controlling HIV/AIDS treatment and consequently preventing, or at least decelerating and thus controlling, AIDS-related deaths. The difficulty, then, which present-day HIV/AIDS caregivers face, is to know that such control is possible but they are prevented from exercising it, at any of the 2 stages. In participants’ discourses, it was evident that denial and nonadherence acted as barriers to such control and consequently posed a challenge to them. In the new era of HIV/AIDS caregiving, where knowledge and ARTs are accessible and, consequently, the trajectory of the illness can be controlled and immediate death can be prevented, death is no longer the prominent issue nor the trauma it once was, as highlighted by previous work ^2,3,8 ; rather, challenges are in the form of new barriers to control. Thus, despite the shifting challenges of HIV/AIDS caregiving, similarities remain as past and present challenges both relate to an inability to exercise control. More crucial, however, is the difference embedded within this similarity: the aspect of HIV that HIV/AIDS caregivers are unable to control. While in the past the main challenge of HIV/AIDS caregiving involved controlling death—a biological challenge—the main challenge of contemporary HIV/AIDS work in South Africa involves controlling adherence—a challenge of more social character.

The issue of control in this study supports the notion prevalent in the psychotraumatology literature that uncontrollable events cause more distress, ⁹ as well as the finding that HIV/AIDS caregivers who are unable to control the disease experience negative emotions such as helplessness, frustration, and anger. ⁵ Accordingly, where HIV/AIDS caregivers previously experienced helplessness as a result of being unable to control the biological aspects of the disease and prevent death because this was not possible, contemporary HIV/AIDS caregivers similarly experience helplessness as a result of being unable to control the social aspects of the disease and prevent death due to patients’ nonadherence when in fact halting the biological advancement of the disease to a fatal stage is now possible. There exists a great deal of empirical evidence to support the importance of perceived control for motivation, coping, and self-development; control both fulfils a regulatory role whereby expectations of control influence an individual’s approach to an activity and an interpretive role whereby the outcome of an activity influences future (sense of) control. ²³ The theory of learned helplessness, ²⁴ for example, highlights motivational, cognitive, and emotional effects of uncontrollability: in a state of learned helplessness individuals may experience reduced motivation for future action, inability to perceive contingency between own behavior and outcome of events, and negative emotions such as anxiety or even depression. Lack of control, then, has clear implications for HIV/AIDS workers’ mental wellbeing.

In order to address such helplessness, solutions to nonadherence, and other barriers to control, need to be identified. If the challenges of HIV/AIDS caregiving, and the inherent barriers to control, have evolved from biological to social, then it may follow naturally that solutions also need to be of social nature, for example, involving human interaction. In this regard, studies of social interaction and communication, involving techniques such as discourse and conversation analysis, may prove particularly useful, not least because previous research has highlighted the importance of patient–provider communication for adherence. ²⁵ Examples of communication training involving such techniques are those that are developed at the University of the Witwatersrand in Johannesburg, South Africa: training that is based on analysis of instances of real interactions between health professionals and clients, ^26,27 addressing issues such as adherence (or, rather, nonadherence) to ART ^28,29 and informed consent with the aim of improving these matters. ³⁰ Such training is undoubtedly already of relevance to HIV/AIDS caregivers, but there is reason to believe that it may become even more important in the future. In the context of this particular organization under study, the aforementioned issues of control were predominantly an aspect of the outreach community care; the residential care center was found to be a high-control environment. The organization, however, has now undergone a major organizational change whereby the residential facility has progressively been phased out, and focus is shifting toward outreach community care. Consequently, there is even greater potential for the HIV/AIDS caregivers to experience control-related helplessness, and, therefore, communication training based on findings from communication and interaction research has an important role to play in the work and psychological well-being of the staff and volunteers. Such research is not limited to this domain, however, as its application and benefits extend to the wider health and medical community.

Notwithstanding the far-reaching implications of discursive research, this study naturally has limitations. Mainly, the generalizability of the study findings may be limited due to the relatively small sample size drawn from a single research site. It is not unfeasible that the particulars of the challenges faced by the HIV/AIDS caregivers at this particular organization, and their subsequent needs, differ from those of HIV/AIDS caregivers in other contexts. It would, for example, be of interest to assess the applicability of the study findings in Kwa-Zulu Natal, the South African province, with the world’s highest HIV and AIDS-related death rates. ³¹ The study, nonetheless, endorses that the new era HIV/AIDS caregiving involves new or other challenges and that a decline in the stressful nature of such work should not be presumed as a consequence of the decline in AIDS-related death rates. Rather, this study illustrates the complex nature of the multifaceted challenges inherent in HIV/AIDS caregiving and accentuates the importance of ongoing, regular assessments of the needs of those who undertake HIV/AIDS caregiving in order to identify the evolving needs that inevitably develop in response to the evolving challenges of such work.