Culture,

Communication

and the

Quality of Life of People with HIV

3. Factors Influencing the Quality of Life of PHAs in Hong Kong

Analysis of the focus group discussions resulted in three primary findings regarding participants’ response to the WHO-QOL facets and domains. First, although each facet is given relatively equal attention in the questionnaire, participants in our focus groups regarded some factors as dramatically more important than others, and some facets from the questionnaire were seen as relatively unimportant. Figure 1a and 1b (Appendix) show the result of the content analysis of participants’ responses to the WHO facets and domains. The factors participants most strongly associated with quality of life were as follows:

Disclosure

Social Inclusion

Negative Feelings

Medications and Treatment

HIV related symptoms (including symptoms related to side-effects of medications)

Availability and Quality of Care

and

Financial Problems

It should be noted that the last factor, financial problems, is not even included among the domains and facets on the WHO/QOL-HIV/AIDS module.

The second important finding relates to the relationships among these factors. Rather than discrete issues that are experienced and dealt with separately. participants’ portrayed these issues as closely interrelated, their perceptions of one factor invariably affecting how they viewed other factors. Rarely did the discussions fit neatly into the domains and facets provided on the questionnaire. Instead, talk about one domain or facet frequently tended to spill over into talk about other domains and facets.

The category which was linked most strongly with the most other categories was disclosure. In fact, issues regarding ‘who knew and who did not’, ‘how much they knew’, ‘how they handled the information’ and ‘whether or not those who did not know might find out and how they might react’ were at the center of discussions of nearly every aspect of the PHA’s Quality of Life. Figure 2 (Appendix) shows the strength of association between disclosure and the other facets. The facet most strongly associated with disclosure was social, cultural and familial roles. Other facets strongly influenced by disclosure were work capacity, managing medications and treatments, social inclusion, the ability to deal with symptoms and side effects, the ability to access services and care, and sexual relationships. Disclosure was also the facet mostly strongly related to negative feelings like anxiety, anger and depression.

Finally, for all of the facets listed above, what seemed to concern participants’ most was not their material dimensions, but their social dimensions. Talk about medications and treatments, for example, tended to focus more on the disruptions that taking medicine (and concealing it from friends or family members) created in participants’ social interactions, and negative feelings were seen mostly as a consequence of being unable to fulfill certain social or familial roles, having to lie to friends and relatives, and the pressures associated with managing one’s identity in the social world. In contrast to the structure of the questionnaire which presents social relationships as a separate domain, participants in our study portrayed every aspect of their Quality of Life as somehow mediated through social relationships, and it was the degree of success they felt they had in managing these relationships which determined how they judged their Quality of Life and their capacity to overcome barriers to improving it.

This view of Quality of Life as a social rather than material construct was mirrored in the empirical themes that emerged from the data. Among the topics which participants brought up themselves, the topic of relationships recurred most often and was talked about the most. Among the relationships mentioned, the one given the most attention was the PHA’s relationship with his or her family. The next most talked about relationships were those with nurses and doctors and other PHAs. Other important relationships included those with parnters, friends, social workers, employers and colleagues and volunteers from AIDS service organizations. Other important themes that emerged from the data were acceptance, both from others and ‘self-acceptance’, the effect of attitude on how PHAs managed their condition, particularly in regard to discrimination and stigmatization, various coping strategies used in interactions with others, and the stress brought on by change and uncertainty.

Despite a fairly consistent correspondence among groups regarding the categories they gave the most attention to, there were some differences in the amount of attention given to these categories among PHAs, professional caregivers and non-professional caregivers, and among PHAs themselves based on their sexuality, the length of time since their diagnosis, and their ethnicity. All of the groups gave approximately the same proportion of attention to medications and treatments, HIV related symptoms, and negative feelings (although the things they said when addressing these facets were often very different). Attention to some other categories, however, was widely variable among groups. PHAs and their friends and family members spent significantly more time talking about disclosure, for example, than did professional caregivers, and professional caregivers gave much more attention to the relationship between sexual activity and Quality of Life than did either PHAs or their spouses or partners.

Among PHAs themselves (see Figure 3, Appendix), perhaps not surprisingly, Chinese participants devoted more than ten times more of their discussions to disclosure than expatriate Western PHAs, talked about social, cultural, and familial roles nearly three times more than expatriates, and discussed availability and quality of care more than twice as much. Expatriate PHAs, on the other hand, talked much more about HIV related symptoms, medications and treatments, chances to acquire information and skills, and body image. The Chinese participants, in other words, were more likely to focus on the social problems of living with HIV, whereas Westerners focused more on physical problems and medical solutions.

Gay PHAs talked about disclosure slightly more than straight PHAs, one reason being that disclosure of HIV status also often involved considerations about disclosure of gay identity. Gay PHAs also gave more attention to personal relationships and medications and treatments, but discussed social, cultural familial roles only half as much as their straight counterparts. In contrast, heterosexual PHAs gave relatively more attention to social, cultural and familial roles and social inclusion, along with availability and quality of care, work capacity and financial issues. Both gay and straight PHAs gave about the same amount of attention to sexual relationships.

There were also differences in the amount various facets were discussed between PHAs who had been diagnosed within the last two years and those who had been diagnosed two or more years ago. Recently diagnosed PHAs gave more attention to clinical results, sexual activity and social inclusion, while those who had been living with the virus longer talked more about HIV related symptoms, diminished work capacity, and death and dying. The largest discrepancies between more recently diagnosed PHAs and those who were diagnosed more that two years before was that those who had been living with HIV longer talked more than twice as much about disclosure, while more recently diagnosed participants expressed negative feelings nearly twice as frequently as longer term survivors.

3.1 Disclosure

By far the most significant factor affecting the Quality of Life of the PHAs in our study, especially Chinese PHAs, was disclosure. The degree to which participants felt able to disclose their sero-status (as well as other aspects of their condition like the probable source of their infection, behaviors or identities associated with infection, whether or not they were experiencing pain or other symptoms, and to what degree they were able to adhere to their drug regimens) to friends, spouses/partners, family members, social workers and healthcare professionals was portrayed as affecting nearly every aspect of their lives from sexual activity to access to care. ‘The worst thing about AIDS,’ said one participant, ‘is that we can’t tell others that we feel uncomfortable since we are unwilling to let them know we have the disease’. (PHA Gay > 2 yrs. 18/21).

Research into HIV disclosure in other contexts has been largely quantitative, focusing primarily on frequency of disclosure, the people to whom information is likely to be disclosed, and the relationship between disclosure and other factors such as disease progression and health seeking behavior. Studies, have found, for example, that most HIV positive individuals disclose their sero-status to one or more friends, but that they are less likely to share this information with family members (Hays et al.1993, Simoni et al. 1995, Stempel et al. 1995). The issue of disclosure has been found to be a potent stressor for PHAs in all of the cultural contexts in which it has been studied and regardless of whether PHAs choose to reveal their condition or not (Holt et al. 1998, Keogh et al. 1995, McCain and Gramling 1992). Individuals who choose to disclose their HIV status may have to contend with issues such as discrimination and a disruption in their personal relationships, while for individuals who choose not to disclose their status, the ongoing process of concealment can create fear and anxiety and can interfere with the adoption of appropriate health-related behaviors such as safer sexual practices and regular clinic attendance (Hays et al.1993).

Despite the difficulties associated with disclosure, however, most studies on PHAs who have disclosed have found that they generally perceive the reactions to their disclosure as having been favorable or helpful (Hays et al. 1993, Simoni et al. 1995, Stempel et al., 1995), and some studies suggest that disclosure may either directly or indirectly result in improved physical health and immune functioning (Cole et al. 1996, Pennebaker, ed.1995, Petrie et al. 1995). Disclosure has been associated with less frequent visits to physicians and greater degrees of normal immune functioning and autonomic nervous system regularities. Non-disclosure, on the other hand, has been associated with more frequent health problems, lower levels of perceived social support and more problems dealing with sexuality and intimate relationships. (Perry et al., 1994). In fact, most studies in this area suggest that persons who disclose HIV-positive status have a higher overall Quality of Life than those who do not (Serovich et al. 1998).

There have been relatively fewer qualitative studies on HIV related disclosure (see for example Holt et al. 1998, Kimberly et. al 1995, Serovich et. al 1998). In these studies, issues regarding the reasons PHAs decide to disclose or not disclose, the strategies they use to disclose, and their perceptions of how people to whom they disclose react, are explored. Based on their interviews with women PHAs, for example, Kimberly her colleagues (1995) outline six stages PHAs often go through as they navigate the disclosure process: (1) adjusting to the diagnosis, (2) evaluating personal disclosure skills, (3) taking inventory of whom to tell, (4) evaluating potential recipients’ circumstances, (5) anticipating reactions of the recipient, and (6) having a motivation for disclosing. In their interviews with positive gay men, Holt and his colleagues (1998) found that disclosure has a dual role in HIV infection, acting as both a stressor and a mechanism by which individuals contend with their infection.

There is also a relevant body of work on disclosure not specifically about HIV, but addressing norms and patterns of disclosure in Chinese culture. Studies on self-disclosure comparing Chinese and American subjects have not shown that Chinese are less likely to disclose personal information than Americans, but that there may be difference in the topics they are willing to discuss, the people they are willing to discuss them with, and the detail to into which they are willing to go in their disclosures (Chen 1995). Wheeless and his colleagues (1986) observed, for example, that while American subjects tended to disclose personal information more frequently and to more people, their Chinese subjects were more likely to disclose information in more depth. There is also some evidence that Chinese may be more likely to consider collective rather than individual consequences when deciding whether or not to disclose difficult information. In his study comparing the ‘coming out’ strategies of Caucasian and Chinese gay men in America, Liang (1997), for example, found that Chinese subjects were more likely to talk about the effect disclosure had on other people whereas Caucasian subjects focused more on their individual, internal struggles with the ‘coming out’ process.

One of the most problematic aspects of the WHO/QOL-HIV/AIDS module, and the one which perhaps most clearly belies the theoretical assumptions that lie behind the questionnaire, is the listing of the facet of disclosure within the psychological domain. The view of disclosure implied by this placement is that it is primarily an individual emotional or cognitive issue rather than a social one. In contrast, statements by our participants consistently represented decisions about whether to disclose, what to disclose, to whom disclosure should be directed, and the various consequences of disclosing (or not disclosing) as inseparably bound up in a complex web of social relationships and social roles. The way disclosure is managed is dependent on the nature of one’s existing relationships with others, and the act of disclosing invariably and unalterably changes those relationships. Disclosure was seen to have an important impact on participants’ ability to do things like access care and services, take their medicine on time, and manage situations in the workplace. It was also seen to affect the way social relationships and issues of social identity were handled. Finally, it was seen to affect PHAs ability to cope with negative emotions and psychological crises.

Deciding whether or not to reveal one’s HIV infection to other people is a complex process, and participants mentioned a range of factors and conditions which influenced this decision. Choosing not to disclose was related to such factors as fear of discrimination, fear of losing their jobs, fear of rejection or abandonment by loved ones, fears that their confidentiality might be violated, and the shame and guilt they associated with their infection. Among all of these fears, the fear of discrimination and social stigmatization was one of the strongest. One participant said:

It’s not a matter of whether others find out or not. The point is, in your heart you always fear that people will find out. Even if you can find a job, if others find out about it, you would definitely lose the job. The people in the society know nothing about the disease. If they could understand, just like you get along with us, they would know that it’s nothing at all. But they don’t understand. They have a different way of thinking. Therefore, our psychological pressure is caused by the society. (PHAs Non-Gay < 2yrs.,130/141)

‘People will be afraid of you even you are miles away, said another. ‘If there is an AIDS patient taking a bus, I think half of the people on the bus would go away’ (PHAs Non-Gay < 2yrs., 234/238).

Fears of discrimination touched every aspect of our participants’ lives from casual interaction in public to more intimate relationships, and while discrimination from strangers was a constant worry, the fear of discrimination from those closest to them like friends and family members was even more intense:

We are afraid to let our friends know about it or our colleagues know, especially our family. Because people either don’t accept you or they push you away. If you tell the wrong person, everybody will know about it. And people just stay away from you. I have seen things...you know people had HIV and friends came to know about it. And suddenly he has no friends! No more friends! (PHAs Expatriates, 893/900)

You can’t tell your friends because once you tell your friends, your telephone stops ringing. It’s true! The telephone stops ringing! People sit and eat with you and literally they watch what you have touched. And even if you drink something, they would...be very careful because he’s drinking from that glass or eating with that spoon… (PHA Expatriates, 102/111)

Don’t mention the people outside, I don’t care how they treat me. But for my own relatives, my brother once tried to persuade me not to go to his home and have dinner. I was not sick, I used to go to my auntie’s home and have dinner during festivals. But once they knew that I’d caught the disease, he talked with me privately and tried to stop me from having dinner at his home. I asked him why. So he explained to me that there were lots of kids at his home, and kids were naughty. If anything happened to you and the kids get infected, they would be very innocent. See, even your closest relatives have such a state of mind, don’t even mention those people in the society. ( PHAs Non-Gay < 2yrs., 618/630)

Not all of the motivations behind not disclosing (or disclosing in a limited way), however, were negative. Disclosure had a paradoxical dimension for participants. On the one hand, inability to disclose was seen as their greatest problem. On the other hand, however, concealing their condition from those around them was seen as the most effective way to avoid problems:

F: Are there any problems, for example, your communication with other people?

PHA: The other people don’t know that we are patients and they treat us just like

normal people. So what do you mean by a communication problems?

(PHA Consultation 108/113)

Having AIDS is ‘not a problem,’ said another participant, ‘if I can bring the secret to my coffin’ (PHAs Gay > 2 yrs 698). For some participants, controlling disclosure functioned as a way to increase overall feelings of control in the face of the uncertainly associated with living with HIV and dealing with potential discrimination was see chiefly as a matter of information management.

We should use our own discretion to control those situations. It’s not necessary to be so dramatic, to always talk about discrimination. Though sometimes the society might be quite discriminatory, we ourselves must love and protect ourselves first, and we have to use our own discretion. The point is, it’s you who decides what to say, not anyone else. (PHA Non-Gay < 2 yrs., 984/991)

Not disclosing to others was also seen as a way of maintaining ‘normal’ lives, not just because it allowed PHAs to preserve the status quo in existing relationships, but also because it was a way to avoid becoming the target of other people’s questions and concern. Not disclosing, then, was a strategy to avoid taking on the ‘sick role’:

Man4:I don’t want myself to be labeled, to be restrained within a group. I was afraid to see others suffering from this disease in the past. Now I feel bad when others regard me as a patient because it seems that they are reminding me.

Man5: I don’t like it! (PHAs Gay < 2 yrs., 624/630)

In discussing how they determined whether or not to disclose their sero-status, participants revealed a strongly pragmatic attitude, one in which three inter-related considerations came into play: (1) the utility of disclosure (whether or not participants could anticipate any practical advantages as a result of it), (2) the person to whom the disclosure was directed (what kind of response could be anticipated from them, whether or not they were seen to be sufficiently ‘knowledgeable’ or ‘sympathetic’ to respond in an appropriate way, and how the PHA’s existing relationship with this person might be affected), and (3) the timing of the disclosure.

One of the strongest considerations affecting whether or not to disclose was whether or not the PHA felt disclosure would be ‘useful’ in a practical sense. In cases where disclosure was deemed unnecessary, participants often opted not to disclose. When asked whether or not he had told his wife about his condition, for example, one PHA said, ‘There hasn’t been any sex between us for years, so I don’t find it necessary to tell her’ (PHA Consultation 591/593). ‘Sometimes,’ said another, ‘you just don’t need to tell other people’ (PHA Gay > 2 yrs., 798). This calculation of ‘need’ was even seen to extend to medical personnel, especially in non HIV-specialist settings. When asked if she stated clearly to healthcare workers in public (non-HIV) clinics that she was infected, for example, one participant said: ‘No. I don’t want to and I don’t need to to fulfill my needs’ (PHA Non-Gay > 2 yrs., 1328/1329). One of the most common reasons participants gave for not disclosing to friends and family members was ‘there’s nothing they can do about it.’

The second major factor influencing the willingness of PHAs to disclose was the identity of the recipient of the disclosure. Hardly any of our participants had difficulty disclosing to other PHAs, and most were relatively comfortable disclosing to healthcare workers (at least in HIV specialist settings) and staff and volunteers from AIDS service organizations. Partners and friends were seen as more difficult to disclose to, and almost all of our participants found it hard to disclose to their family members, especially parents. The two main considerations that influenced the assessment of whether someone was a suitable recipient of disclosure were their probable reaction and the likelihood that the disclosure would alter the relationship in significant ways. Estimates of probable reaction were based on such things as the age, sexuality and educational level of the potential recipient. Even in cases where the PHA believed the reaction would be favorable, however, they often chose not to disclose if they believed disclosure would disrupt the existing relationship. This was particularly true in relationships in which roles and duties were already strictly defined (like parents and spouses), and less so in relationships where roles were more flexible or egalitarian (like friends and siblings):

I told to my sister because she is young and will accept me easily. I don’t mean my parents wouldn’t accept me but they would be upset. They’re old, and I want them to be happy. (PHA Non-Gay > 2 yrs729/732)

Finally, timing was a major consideration in disclosure, participants frequently citing how important it was to ‘find the right time’ to ‘break the news’. Unfortunately, the ‘right time’ was seldom defined as a time in which the PHA was physically healthy and psychologically stable and the recipient was emotionally prepared. In fact, it was during these times that participants were least likely to disclose. Rather, most saw the ‘right time’ as being that time at which they could no longer creditably conceal their condition because of serious health problems. Thus disclosure was often left to ‘critical moments’ such as medical emergencies or hospitalization. In fact, most of the stories of disclosure to family members related in the focus groups took place in the context of such ‘critical moments’. One participant said:

I won’t tell others until my physical state is very bad... I think if it isn’t a critical moment and I don’t need others’ help, I won’t disclose it. (PHA Gay <2 yrs. 342/348)

Unfortunately, it is in such moments, when both PHAs and their friends and family members are particularly vulnerable and preoccupied with the physical and emotional considerations of the medical emergency, that disclosure is often most difficult to navigate.

The most common reasons for not disclosing given by the Chinese participants were not reasons that focused on the possible consequences disclosure might have on them as individuals, but on the consequences it might have on the people around them. Ironically, often the fear of disclosure came not from the fear of being rejected or discriminated against, but from the fear that those who knew would be ‘too concerned’ about them and experience ‘unnecessary’ anxiety.

A majority of the Chinese participants expressed that their most important reason for concealing their condition, especially from family members, was the fear that knowing would cause others worry, distress or pressure:

F: Why is it bad if your friends know that you have the disease?

PHA: They can’t help me if they know or I will be their burden. (PHA Non-Gay > 2 yrs., 618/624)

F: Does your mother know about it?

PHA: No I can’t tell her about it. I don’t want her to worry.

F: But only your sister knows about it?

PHA: Yes, but I’ve noticed that there already exists a big difference between those

family members who know and those who don’t know. For those who know, I can see that they are facing great pressure. Taking my elder sister as an example, she has to bear great pressure because her brother has such a disease. She would be especially concerned about me, like becoming frightened whenever I feel sick. But for those who know nothing, it’s not a problem. They would not have to be especially concerned about the disease and me. So I know that I would give them pressure if I tell them. (PHA Consultation, 433/460)

Even in cases where participants had disclosed their sero-status to family members, they sometimes concealed other information such as HIV related symptoms and pain:

I have to think about the affect of my disease on others. Some of my family members know that I am infected but I don’t let them see me when my condition is bad because I don’t want them to worry about me. (PHAs Gay <2 yrs., 494/497)

Most of the Chinese participants saw the consequences of their infection to spread far beyond the confines of their individual experience, touching on the well-being of the groups they belonged to, especially the family.

In other words, when they considered Quality of Life, they saw it in a collective rather than individualistic way, and preserving the Quality of Life of the entire family unit or their group of friends was often seen as just as important as improving their own individual well being:

PHA 2: I would feel more comfortable if I could tell my friends.

PHA3: You would feel comfortable but not your friends.

PHA2: Right, so it’s selfish.

PHA3: The important thing is, maybe your friends would feel uncomfortable knowing. (PHAs Non-Gay >2 yrs., 808-810)

Although most participants seemed to feel that not disclosing was a way to reduce the amount of stress in their lives and the lives of those around them, the strategies they used to avoid disclosure were often portrayed as creating considerable stress. Sometimes stress resulted from the complex interactional acrobatics that concealing their condition often necessitated, keeping track, for example, of the different excuses that had been made to different people. Sometimes the stress was the result of having to keep to themselves information that was central to their lives. ‘You need a release,’ said one participant. ‘You need to talk, and that’s the biggest communication problem. You can’t communicate very much. You have to hide it. And it’s awful.’ (PHAs Expatriates,188/190).

Common strategies for concealing one’s sero-status were avoiding health related topics, lying and making excuses, feigning other illness such as pneumonia, cancer, hepatitis and neurological disorders, withdrawing from social situations (including, in some cases, moving away from one’s family or quitting one’s job), using ‘secret languages’ and ‘code words’ when discussing HIV or medications in public, and eliciting the aid of friends, family members or service providers to assist in ‘passing’ (Goffman 1964).

Despite the considerable fear and anxiety participants associated with disclosure, a number of them had disclosed to friends and family members, and their stories of disclosure were mostly positive. Disclosure was seen as relieving the psychological burden of secrecy, improving their ability to access sympathy and care and increasing their sense of closeness and intimacy with those around them.

Just as participants gave a wide variety of reasons for not disclosing, they also talked about a variety of factors which motivated them to disclose, among which were the need for emotional or psychological ‘release’, the need for ‘someone to talk to’, the need to access care and treatment more easily, the feeling that disclosing was a way of ‘facing reality’, feeling that they had the ‘responsibility’ to disclose, especially in the case of sexual relationships, and the need to disclose in order to illicit the aid of confederates in more effectively concealing their condition from others. Some participants saw disclosure as a way to test the genuineness or loyalty of their friends, and took the attitude that those who responded unfavorably were not worth having as friends to begin with:

F: Who do you tell?

PHA: Those who are my best friends. Why? It’s because if they don’t treat

me as a friend after knowing that I have the disease, I can make other friends

quickly. (PHAs Gay > 2 yrs., 395/398)

Others gave ‘altruism’ as an important reason for disclosure, saying that if they believed their disclosure would be of benefit to others, then would feel it was ‘worth it’:

When I would tell my friends? If I can help him think of something, I

will tell him. For those who are 17 or 18 years old thinking that they are

brave and dare to do whatever, I will tell them. It’s not because of the

friendship but I will decide whether I can help them. (PHAs Gay > 2 yrs., 41/447)

Another motivation for disclosure mentioned was to avoid other ‘spoiled identities’ which the PHA felt were more stigmatizing than HIV:

Why did I tell my boss? I would be worse off if I didn’t have a job but I wanted to know if he would employ me. I didn’t want him to say that I was a bad guy if I always had sick leave later. I didn’t want him to think I was lazy. (PHAs Non-Gay > 2 yrs., 345/353)

Participants reported using a variety of strategies when disclosing, including going through a third party like a nurse or sibling, and performing ‘pre-disclosure assessments’ such as asking potential recipients of disclosure questions about HIV to test their reaction. One of the most difficult aspects of disclosure in a Chinese context is that strategies of indirectness often used in the disclosure of other problematic issues were not seen to be available to PHAs. It has been observed, for example, that disclosure of gay identity is often performed in an indirect way in Hong Kong, for example, leaving gay books or magazines in places where their parents can find them, and ‘being out’ is not always accompanied by explicit verbal acknowledgement but rather a kind of ‘tacit acknowledgement’ (Chow 1998). The use of such strategies is much more problematic with HIV infection, a situation which is difficult to merely ‘hint at’ and difficult to manage without explicit acknowledgement.

Despite the generally positive feelings participants related to their disclosure experiences, however, managing relationships with people after disclosing was never seen as simple. ‘If someone accepts you,’ said one participant, ‘the process you two have to go through will still be hard’ ( PHAs Gay < 2 yrs., 536/537). Even in the context of positive reactions, PHAs felt their friends or family members did not know how to treat them, often avoided the topic, lacked sufficient information or said inappropriate things. Others found that the gestures of ‘support’ that sometimes followed disclosure could be overwhelming, undermining their sense of self-efficacy and independence.

One of the most important aspects of disclosure revealed by our participants was that it was an issue not confined to sero-status alone. Concealing sero-status from people often involved concealing a wide range of other information seen as potentially implicating the PHA such as symptoms and side effects, taking medicine, and relationships with staff and volunteers of AIDS service organizations. Similarly, in cases where sero-status had been disclosed, the issue of disclosure was not laid to rest. In many cases, decisions about disclosure became even more complex, the PHA having to decide how much more to tell about their health condition, their feelings, their past activities and their plans for the future. In fact, participants in our focus groups talked about concealing information from people to whom they had disclosed their sero-status almost as much as from people to whom they had not disclosed it.

Disclosure, therefore, was not seen as an ‘event’ occurring at a single moment in time, but rather as an ongoing process of ‘approach and avoidance’ (Cronen, Chen, & Pearce, 1988), a gradual and very controlled ‘opening’ accompanied by a process of continual assessment based on the PHA’s needs, the person they were speaking to and the situation in which the speaking took place.

There were some differences in the amount of time different groups of PHAs discussed disclosure and the kinds of concerns they associated with it. The most dramatic difference was between Chinese PHAs and their Western expatriate counterparts, with Chinese talking about disclosure more than ten times more than expatriates, with expatriates focusing more on disclosure in the workplace and Chinese giving more attention to disclosure in the home environment. Gay PHAs were also more likely to discuss disclosure than straight PHAs, reflecting what Ariss (1997:61) calls the ‘double whammy’ of disclosure for gay men, the fact that disclosing HIV status also often involves revealing previously undisclosed information about one’s sexuality. In some cases, gay PHAs were particularity sensitive to popular perceptions linking HIV to gay identity, and feared that disclosing their sero-status and their sexuality at the same time might strengthen these perceptions:

I told my family that I am gay but they don’t know I have AIDS since I don’t want them to put an equal sign between AIDS and gay. I will tell them when the timing is right. (PHAs Gay < 2 yrs., 499/502)

Finally there were differences in the amount of time devoted to discussions of disclosure between more recently diagnosed PHAs and those who had been diagnosed more than two years prior to the interview. Studies in the West have noted that the way disclosure is dealt with by PHAs is strongly influenced by their disease stage and length of time since diagnosis. Mansergh et al., (1995) for example, found that disclosure tends to increase with time from diagnosis and with an increase in symptoms, and Holt et al.(1998) observed that the longer PHAs live with their diagnosis the less stress is associated with disclosure. In our study, however, the opposite seemed to be true. Not only did the more recently diagnosed PHAs we interviewed report more disclosure than PHAs with relatively longer ‘careers’, but those who had been living with their diagnosis longer talked more than twice as much about problems related to disclosure). Moreover, the episodes of disclosure reported by recently diagnosed participants were more often the result of a conscious choice, whereas the episodes described by those who had been diagnosed for a longer period tended to be the result of external conditions (medical emergencies or severe deterioration of health.

3.2 Availability and Quality of Care

One of the most important aspects of health related Quality of Life is the degree of access individuals have to medical and psycho-social support services and the quality of such services. In this regard, most would consider PHAs in Hong Kong quite fortunate. Both the Department of Health and the Hospital Authority have dedicated clinics providing regular treatment and support services to people with HIV staffed by highly trained professionals. Nearly every PHA who wants to go on advanced antiretroviral treatment has that opportunity, and medications and clinical tests are provided for free. Furthermore, of the nine AIDS specific NGOs in the SAR, more than half provide services for PHAs including buddy services, support groups, transportation, hospital visits, home care nursing and informational newsletters. All of these services are offered in the context of one of the most technologically advanced and equitable public healthcare systems in Asia. Nevertheless, Availability and Quality of Care surfaced as a persistent concern among the people living with HIV we talked to and their friends and family members. Understanding the reasons behind this paradox is crucial to helping policy makers more efficiently channel the considerable resources involved in the care and treatment of HIV infected individuals, helping clinicians and other caregivers improve their services, and helping those who seek to understand Quality of Life issues come to grips with the limitations of purely medical models and purely material solutions.

The first step in understanding this paradox is making the distinction between ‘availability’ and ‘access’. While a host of medical and psychosocial services may be available, this is no guarantee that every PHAs is in the position to make full use of them. Factors acting as barriers to access might include things like administrative procedures, logistics (location and scheduling), cultural norms regarding the seeking of healthcare, communication problems between clients and carers, and the consequences using HIV related services might have on PHAs’ relationships with family members and friends. Ironically, the wide availability of services, especially when these services are duplicated by ‘competing’ NGOs and clinics, can also act as a barrier to access, creating for clients dilemmas regarding which services to use and which caregivers to display ‘loyalty’ towards.

As with nearly all of our participants’ concerns, the issue of disclosure was seen as a major factor in being able to access care and services, particularly in non-HIV specialist settings like private doctors, dentists and ophthalmologic clinics. Most of the PHAs we talked to exhibited an intense reluctance to reveal their sero-status in such settings, even though they acknowledged that by not disclosing they might be jeopardizing the ability of healthcare workers to provide efficient and informed care. On the one hand, not disclosing in non-HIV specialist medical settings can be seen as part of the more general reluctance to disclose discussed above. On the other hand, however, it can be seen as a rational response to a situation in which healthcare workers outside of the HIV field are apparently ill-equipped to serve PHAs. Nearly every participant in our focus groups with PHAs reported at least one story of HIV related discrimination in a healthcare setting. Incidents included:

being refused treatment after their sero-status was revealed,

being made to wait longer than other patients for services,

having their medical charts marked with blood precaution stickers (referred to as ‘yellow beans’) despite the practice of universal blood precautions in local hospitals,

doctors and nurses taking unnecessary precautions (like wearing gloves and face masks) during routine examinations and treatments,

being refused basic items like food, water and extra blankets during hospital stays, and

having their sero-status unnecessarily revealed to other staff and patients.

The most consistent complaint was the fear and discomfort they perceived from healthcare workers in such settings. ‘Can you imagine the situation?’ said one PHA, ‘The doctor who examined me was very scared. He stayed far away from me and wore a mask for every procedure. It was very troublesome. (Non-Gay < 2yrs., 1047/1053). ‘They were always scared,’ said another, referring to the nurses in a hospital in which she had been a patient. ‘Seeing you was just like seeing the devil. In fact, seeing the devil was better than seeing you; they preferred to see the devil’ (PHAs Non-Gay < 2yrs., 558/561).

These experiences have resulted in a situation in which not revealing one’s HIV status in many non-HIV related medical settings has become the norm in Hong Kong, and this practice is sometimes encouraged by healthcare workers in HIV specialist clinics. ‘I felt pain in my teeth and I asked my doctor whether or not I could tell the dentist that I am an AIDS patient,’ said one participant, ‘ He told me that I should just say that I had hepatitis and the dentist would be careful to deal with my blood (Non-Gay > 2 yrs., 16/20).

This situation has possible serious consequences for both clients and healthcare providers. While it is clearly the case that revealing one’s sero-status in not essential in many contexts, it can be argued that the quality of care is almost always better if the healthcare worker is fully informed of the client’s health status. Furthermore, feeling that they have to lie about their status (or being advised by professionals to lie) even to doctors and nurses, who, of all people, should be the most informed about HIV, has the potential to reinforce in clients the feeling that there is something essentially ‘shameful’ about their condition and makes disclosure in non-medical settings even more difficult. Finally, although not disclosing in many medical settings is a short term solution to the phenomena of discrimination, in the long run it serves to perpetuate discrimination by ensuring that non-HIV specialist healthcare workers do not get the experience and training necessary to deal with HIV positive clients.

In contrast to non-HIV specialist contexts, participants were generally extremely positive about the services provided and the attitudes of healthcare workers in HIV specialist clinics, although discrimination was also seen as a factor in their willingness to access such services. This was particularly the case regarding the Department of Health’s new clinic in Kowloon Bay, whose opening was marred by protests from local residents. Incidents in which healthcare workers and clients were harassed by residents, Government inaction in the face of these incidents, and the large amount of media coverage given to the case, made many participants extremely reluctant to use this service. ‘If I had the choice, I wouldn’t go there,’ said one PHA (Non-Gay > 2 yrs., 240). ‘I would rather die than go there,’ said another (Non-Gay > 2 yrs., 269).

While the greatest barriers to accessing care in non-HIV clinics were social (discrimination and stigmatization), in HIV-specialist settings the barriers participants reported were mainly logistical. PHAs complained about the inconvenient location of clinics, the difficulties in fitting clinic appointments into their work schedules, and being subjected to long waits at clinics. A recurring theme among participants when discussing clinic visits was ‘time’. Clients felt both that visiting the clinic was unnecessarily time consuming, and also that, during appointments, they were given too little time to consult with healthcare providers, particularly doctors. Related to this last concern was the perception that clinics are understaffed and that doctors and nurses have too many clients to take care of. Several participants related cases in which a question went unasked or a service went unaccessed because they felt the healthcare worker involved was too busy to entertain their request.

Some participants also raised concerns about limitations in the availability of treatment options and delays in access to laboratory tests or drugs. Often, what bothered participants as much as these limitations and delays was the quality of information offered by clinicians regarding them. ‘We… can understand the difficulty hospitals have to face…but the question is that we are have got to know more,’ the son of a PHA commented. ‘When my mother was changing her medicine, ahe waited three to four weeks but still there was no drug available for her. There ought to be the drug for her originally, and so she had stop taking treatment for two to three weeks. During those weeks I was really nervous because she couldn’t receive the drug. How could this be?’ (Non pro Caregivers, Grp.1, 2133/2149).

Participants were also generally favorable in their assessment of services offered by NGOs, with volunteers and NGO staff often being seen as people they could talk to about issues they felt reluctant to talk about to healthcare professionals, friends or family members. NGOs were also seen as providing valuable services like homecare nursing, transportation and hospital visits. Some participants also regarded advocacy as an important role of NGOs, voicing out their concerns in situations where they felt unable to do so themselves. The most valuable service NGOs were seen to provide, however, was the chance for PHAs themselves to interact with one another outside of the context of the clinic.

I think that the organizations are very helpful to us. They can really make us more active, not like before, feeling the world is going to end because we have this disease. My outlook on life has changed since I had contact with them. They can help me solve my problems. I consider it really good. (PHAs Non-Gay < 2yrs., 2984/2989)

The most important point is that, since I got this disease, most of the people that I get in touch with are the people from "The Lookout", "AIDS Foundation" and "AIDS Concern". Those people have given me quite a good impression. With this basic foundation, no matter what they ask me to do I would feel that it would be something good for me. No matter what purpose they have with these forums or seminars, I would not mind. (PHAs Consultation, 39/52)

At the same time, some participants revealed some degree of suspicion regarding the motivations of AIDS services organizations and harbored the perception that organizations ‘competed’ for clients.

F: What is your opinion about these organizations?

PHA:The relationship is like singers and radio broadcast companies. The

former need the latter and the latter need the former. There are a few patients

but many organizations already. Sometimes I think they need us to sustain their

organizations. I look at who is really nice and who is not. (PHAs Gay > 2 yrs.,1421/1437)

Although such perceptions may only represent isolated cases, it is important for NGO staff to be aware that they exist. On one hand, the large number of services offered to a relatively small client pool was seen as positive as it increased choice. On the other, however, choosing from among similar services and the ‘personal politics’ that were often involved in such choices was sometimes seen as problematic, and some participants found it difficult to refuse services, becoming overwhelmed by the number of people they had caring for them or the number of activities they ‘had to’ attend.

3.3 Medicines, Treatments, Symptoms and Side-effects

Along with the quality and availability of medical care, studies in health related Quality of Life often focus on the physical challenges that inevitably accompany living with a chronic disease. For PHAs living in developed regions where advanced treatments are available, concerns about HIV related symptoms have recently been overshadowed by concerns about the side-effects associated with antiretroviral treatments, side-effects like fatigue, gastrointestinal problems, kidney and liver disorders and changes in body shape and appearance (such as facial wasting and lipodystrophy). In dealing with symptoms and side-effects, the tendency of both researchers and clinicians has been to focus primarily on their physical manifestations and to address them with primarily biomedical solutions. For the PHAs in our focus groups, however, at least as important as the physical discomfort associated with symptoms, side effects, medicines and treatments were a host of psychological and social issues ranging from the difficulties in concealing or making excuses for potentially stigmatizing symptoms or side- effects to communicating health problems and treatment preferences to healthcare workers. Again, central to almost all of these problems was the issue of disclosure.

The symptoms and side-effects most frequently reported by participants were fatigue, nausea, anemia, changes in skin complexion, changes in body weight and appearance, and peripheral neuropathy. Sometimes these conditions presented severe physical limitations and intense physical discomfort for them. Other times the persistence of symptoms and side effects, even when they did not limit daily activities or produce pain or discomfort, nevertheless contributed to what Anderson (1992) calls ‘the daily grind of being ill’. Perhaps not surprisingly, participants who had been living with their diagnosis for more than two years discussed symptoms and side-effects significantly more than more recently diagnosed participants, most likely because they had had more experience with them.

Even more than the physical discomfort associated with side effects and symptoms, participants focused on their psychological and social consequences. Symptoms and side-effects were not just seen as problems in themselves, but as barriers to social inclusion, financial security, harmonious family life, self-esteem and successful identity management.

Goffman (1963) divides stigmatized individuals into two types: those with discrediting characteristics and those with discreditable characteristics. Discrediting characteristics are those which are visible to others and so make it almost impossible for the stigmatized to ‘pass’ as ‘normal’. Discreditable characteristics are those which are essentially invisible to others, allowing the stigmatize to present a ‘normal’ identity by concealing the discrediting information from those around him/her. People living with HIV, particularly in the era of effective antiretroviral treatment, exist in an uncomfortable limbo between these two states. While asymptomatic PHAs bear no visible signs of their infection, and so have a relatively high degree of freedom in terms of how they manage their identities, they are at the same time, always ‘on the verge’ of developing symptoms or side-effects which might give them away. Those who have developed visible symptoms or side-effects, on the other hand, are not automatically discredited, since such visible signs are usually not obviously attributable to HIV infection or medication except to the eyes of a highly trained observer (or another PHA). The anxiety surrounding these bodily signs, however, remains. Thus, identity management for PHAs is particularly complex as they are never quite sure when visible ‘stigma signs’ will develop, how these signs might be interpreted by causal observers, and if and how they should attempt to ‘cover’ visible signs of stigma, explain them with excuses or dissembling, or regard them as an indication that ‘the game is up’ and that discovery or disclosure are inevitable.

One of the most frequently expressed reactions to symptoms and side-effects among our participants was wondering how they could be concealed from others, and one of the most common solutions was self-imposed isolation. As one participant put it:

PHA: Yes.. I dare not face them, because they don’t know.. My appearance has changed a lot.

F: For example? How has your appearance changed?

PHA: I was fatter and fairer before.. but I am thin and dark now...

F: Because of the medicine…

PHA: Yes.. and eh.. I dare not meet and contact so much with my old friends...we seldom meet one another now.

F: What are you afraid of?

PHA: I am afraid that they will notice.

F: You are afraid that they will notice.. so you seldom meet with them.. then they wouldn’t know so easily, right?

PHA: Yes.. (PHAs Thai Female, 139/150)

Another participant described the effect of symptoms and side-effects on his social life like this:

Man3: My hands shake when I go out from an air-conditioned room and so I tend to close myself off.

F: What do you mean?

Man3: I think I can’t open myself completely and thus it affects my communication with others.

F: Examples?

Man3: For example I can’t join in any public activities which require much energy. But I can’t tell others why I can’t. (PHA Non-Gay > 2 yrs., 1117/1125)

Symptoms and side-effects were also seen to present difficulties in interaction with those who already knew of the PHA’s sero-status. In some cases, problems with symptoms or side-effects resulted from the different ways PHAs and those who cared for them like partners or family members interpreted them, and so concealing or making excuses for symptoms and side-effects was seen as a way to avoid arguments about what should be done about them:

Sometimes...I don’t know why I sweat a lot recently. My lover told me

to consult a doctor but I think it’s difficult to explain to him that’s no good.

I will still sweat even if I see a doctor. But he didn’t understand me. Others show

me concern but I don’t want to talk with them. (PHAs Gay > 2 yrs., 35/41)

The social problems arising from symptoms and side effects also complicated the physical problems associated with them. Often participants described the situation as a kind of a vicious circle. On the one hand, symptoms and side-effects made it more difficult for them to conceal their condition from others. On the other hand, their fear of disclosure and attempts to conceal or make excuses for symptoms and side effects made it more difficult for them to elicit help in managing or finding relief from them.

Along with these social problems, and often related to them, symptoms and side-effects also gave rise to a host of psychological problems for participants, including depression, diminished self-esteem and confidence, and the anxiety associated with concealing or lying about them. As with the social aspects, psychological responses were seen as inseparable from physical health.

Symptoms and side-effects were seen to increase stress and negative feelings, and stress and negative feelings were seen to exasperate symptoms and side -effects and jeopardize overall health and immune system functioning.

One of the most difficult aspects of dealing with symptoms and side-effects was the uncertainty associated with them and the difficulty, even for medical professionals, to interpret their meaning in terms of the overall health or life-expectancy of the individual. As Brashers and his colleagues (1999) point out, often it is difficult for individuals on HIV medications to discern if their symptoms are a result of HIV infection or of adverse effects of the medications, which can heighten fears about their safety. Adjusting to this uncertainty sometimes resulted in a lowering of expectations. ‘The side effects of medicine confuse me,’ said one participant. ‘I don’t know what my future will be and dare not to think of it. So my demand for a good quality of life is low. (PHAs Gay < 2 yrs., 68/71).

Healthcare workers also showed a strong awareness of the inter-relatedness of physical symptoms, psychological difficulties and social functioning:

Nurse: If their physical condition is stable, they will become more emotionally balanced, but there are many emotional factors that affect their physical condition. They will get other diseases easily if they have mental or emotional problems. Other factors such as support, family, peer group, social life also affect their physical condition. (Pro-Caregivers Grp. 1, 806/812)

In terms of medications and treatments, what presented difficulty for our participants was not just the physical side-effects they caused, but the problems associated with the actual act of taking medicine. In discussing medications and treatments, in fact, participants spent considerably more time talking about difficulties involved in ‘taking medicine’ (more than 800 lines of transcript) than on difficulties associated with physical side-effects from the medicines (136 lines of transcript). Again, what was seen as most disruptive about taking medicine was not the physical dimension, but rather it’s effect on the PHA’s social world.

These findings are consistent with other studies on non-adherence to HIV medications (see for example Brigido et al. 1998) which have found that the greatest barriers to adherence tend to be social and psychological (such as constraints on taking medicine in the home or workplace, difficulties fitting medications into daily routines and economic barriers) rather than physical or medical.

For PHAs who lived with family members, particularly those to whom they had not disclosed their sero-status, taking medicine on time was seen as especially difficult. One participant said, for example, ‘I do not like to take medicine in front of my family. I don’t want them to ask me why I am taking medicine and what kind of medicine I am taking. I can’t tell them the truth that I am taking medicine because I have this disease, and the fact that it is necessary for me to take medicine for a long period of time because of the disease. Usually I just hide the pills in one hand and throw them into my mouth and quickly drink some water’ (PHAs Consultation, 143/153). Even in cases where family members were aware of the PHAs sero-status, participants were keenly conscious of the need to conceal their medicines when visitors were present. One man said, ‘Sometimes when my daughter’s friend comes to my house, I have to go back to my room and take the medicine. I have to hide the medicine immediately’ ( PHAs Non-Gay < 2yrs., 911/913).

Like visible symptoms and side-effects, PHAs regarded the act of taking medicine as a potential ‘stigma sign’ and avoided taking it in front of others to avoid having to explain themselves or make excuses:

Most of the time I hide myself when I take medicine, no matter whether I’m with my family or with my friends. I try not to let them know I’m taking medicine. It’s because.. well, it ‘s really not a big deal. Because I’m sick so I have to take the medicine. But I don’t want them to ask me about it, and I don’t want to lie. So I prefer to keep it all inside me, not letting others to know about it (PHAs Consultation, 210/219).

Fear of being seen taking medicine also interfered with PHAs’ perceptions of their work capacity, as some workplace environments provided limited opportunities for privacy. Some participants even extended this fear to casual observers in public places like restaurants and bars:

You can’t let anyone see you taking medicine, so we have to take it stealthy. When we go out, when we go to work, we have to be stealthy. If there were not so many people it the society discriminating against people with this disease, then you could take the medicine more casually. So taking medicine can be a big problem. (PHAs Non-Gay < 2yrs., 900/905)

Volunteer: They don’t like having medical checkups and they don’t like taking medicine, either, especially when they are in a public place. They are very careful when they take out the medicine box and take the medicine because they are frightened that other people nearby will see them. They are extremely sensitive. They are frightened that other people would see the medicine and suspect that they are AIDS patients. (Non-pro Caregivers Grp. 2, 199/206)

Along with the physical act of taking medicine, other demands brought on by complex dosing schedules were seen by both PHAs and caregivers as severely restricting PHAs ‘freedom’, particularly their ability to participate in social activities and manage social relationships. According to a nurse from one of the specialist clinics:

In fact, many patients reflected to me that it was not the illness itself made them so unhappy. It was the medication which created problems and there were so many restrictions that they could not participate in many kinds of social activities. The feeling

of social withdrawal made them feel so unhappy. Maybe it is better for them if

the medication could have fewer restrictions. (Pro Caregivers Consultation, 31/41)

This was particularly evident in regard to restrictions on eating, which for Chinese has a special social significance (to the point that it is assigned a facet of its own on the Hong Kong version of the WHO’s generic QOL instrument, see Leung et al. 1997). One participant explained: ‘The medication affects my quality of life to a large extent. For example if I go out to have a meal with my friends, I can’t decide the time because I have to take medicine. This may seem like a minor problem but it really affects my quality of life’ (PHAs Gay < 2 yrs., 17/20).

These social issues around taking medicine were seen to interfere with participants’ ability to adhere to their treatment regimens at least as much as physical symptoms. Participants reported altering their dosing schedules or missing doses in order to avoid taking medicine in the company of friends, family members and colleagues or to make it easier for them to fulfill social commitments. Others altered their schedules to control side-effects, but the side-effects mentioned were usually those which they regarded as ‘stigma signs’ which interfered with their identity management:

PHA1: It’s difficult to take medicine regularly if I have to work. I am afraid others will know that I have that disease and dare not take it in a crowd. The timetable for taking medicine is also disgusting.

PHA4: I always delay until the last minute to take it.

PHA 1: I know medicine is helpful but I won’t take it on time.

PHA2: I won’t die if I don’t take it. So I regulate the timetable for myself.

PAH 4: So do I.

PHA1: Some medicines have side-effects, make my complexion dark. So I regulate the timetable.

(PHAs Gay > 2 yrs., 1355/1374)

Finally, symptoms, side effects, medications and treatments were closely related to care issues, particular those involving communication between PHAs and healthcare workers. Problems in this area were sometimes the result of PHAs and caregivers bringing different understandings of symptoms, side-effects, medications and treatments to the interaction.

According to Kleinman (1980), professionals tend to be more concerned with symptoms and side-effects as they relate to clinical models of disease, and less as they affect the social world of the patient, whereas patients experience physical manifestations of their disease not as isolated ‘clinical’ bodies, but as beings who have to constantly interact with others (Silversides 1999). Symptoms and side-effects like skin-rashes and changes in complexion might, from the point of view of a doctor, seem rather unimportant when they do not indicate or result in serious physical problems, while, from the point of view of the client, they may in some ways be even more problematic than more ‘serious’ health problems that are nevertheless invisible to the eyes of friends, family members and casual observers. Other times the problem may be reversed, with PHAs not bothering to mention certain symptoms and side-effects to nurses or physicians because they do not perceive them as interfering with their daily lives or as important enough to take up caregivers’ time with.

The biggest communication problems between PHAs and healthcare workers, however, seemed to revolve around discussion of medications and adherence to drug regimens. Nurses in particular found it very difficult to negotiate consultations about drug compliance, although they saw helping PHAs adhere to their dosing schedules as one of their main jobs. Many of the healthcare workers cited ‘honesty’ as the main obstacle to successful consultations. In fact, some of them entered into consultations expecting their clients to be dishonest:

Doctor : Also, a patient will never disclose to a doctor that he hasn’t take the medication if he thinks that he’ll be scolded. (Pro Caregivers Consultation, 163/165)

Nurse: If you ask them "have you ever forgotten to take your medication?", their answer will surely be "never"! (Pro Caregivers Consultation, 290/292)

Healthcare workers attributed this alleged dishonesty primarily to the power-dynamic between clients and healthcare workers, believing that PHAs were reluctant to reveal their ‘disobedience’ to authority figures. One reason for the difficulties involved in interaction around compliance, however, may be the slightly different perspectives healthcare workers and PHAs brought to issues of taking medicine. Whereas, as mentioned above, PHAs focused on the social problems they encountered and the visible side-effects medicines produced, professional caregivers paid more attention to the physical problems involved, talking about the physical discomfort associated with medications more than twice as much as the PHAs. Nurses and doctors also tended to regard the taking of medicine as an ‘individual choice’ and an ‘individual responsibility’ rather than as a ‘social activity’.

The following excerpt illustrates this emphasis on both physical barriers and individual action:

Nurse: By talking with them, sometimes we know they don’t take it. What we believe is that medicine can help them although it has side effects. We understand some patients are afraid of the side effect and thus don’t take their medicine. But we hope that they can maintain their status quo and so can wait for new medicine. We suggest new medicine or

treatments to them every time. After explanation, we give our patients the right

to choose if they would like to try it. If they accept the new medicine, it

means that they accept suffering the side effects at the same time. If they don’t

try it, I will tell them the consequences. It’s a mutual agreement of choosing

and they have to bear the responsibility. (Pro Caregivers Grp. 1, 949/966)

Another potential reason for miscommunication has to do with the contradictions between the medical model of HIV treatment brought to the interaction by healthcare workers and the ‘common sense’ perceptions of health and disease brought to the interaction by clients (Helman 1984). Everyday models of disease see medicine as something that you take when you are feeling ill and something that, if effective, should make you feel better. Neither of these assumptions holds true, however, for HIV treatments, which are usually taken in the absence of illness and usually make patients feel worse rather than better. Even when provided with medical information about the benefits of treatments, it is often difficult to reconcile this rather abstract information with PHA’s concrete experiences with treatments. Too often there seems to be a contradiction between what their healthcare workers are telling them and ‘what their bodies are telling them’. This is particularly true in the case of asymptomatic PHAs whose only experience of physical discomfort has come from HIV medications rather than HIV itself:

F: But why did you decide to stop taking medicine?

PHA: I couldn’t feel anything wrong in my body. It’s the same for me to take the medicine or not to take the medicine. So I’d rather not take it. (PHAs Non-Gay < 2yrs., 1360/1364)

PHA: If I feel pain in my spine, the doctor will give me some medicine which will cause me pain in the stomach. So I would rather not take any medicine. (PHAs Gay > 2 yrs., 1384-1386)

Because antiretroviral treatment is a new, complex and ever evolving field fraught with uncertainty, healthcare workers themselves sometimes found it difficult to explain treatment alternatives and the justify the discomfort and inconvenience associated with treatments, and PHAs sometimes felt that healthcare workers were not able to give them ‘straight answers’ to the questions they asked.

Nurse: Some medicines make patients feel bored, vomit, etc., leading them change their normal social life. They think the medicine makes them worse. They can’t feel the advantages of medicine. They are very upset. I admire their patience. They ask me if medicine can really help them but I don’t know how to answer them. Sometimes they murmur they will die of the side effects instead of HIV. This is understandable. (Pro Caregivers Grp. 1, 922/931)

PHA: When I seek my doctor’s advice about taking medicine, he can’t give me an exact answer. What am I supposed to do? (PHAs Non-Gay > 2 yrs., 14/1401)

One of the main reasons for communication difficulties around anti-retroviral treatments might lie in the way healthcare workers and PHAs conceptualized adherence iteself, and the kinds of relationships and obligations that it implied for them. Recent research on adherence, not just to HIV medications but drug regimens for other chronic diseases as well, has suggested that the way clients and practitioners speak about adherence issues has an important effect on how successfully adherence is pursued. In the past few years, for example, researchers and clinicians have advocated abandoning the term compliance, which is seen to contain a value statement and ‘directional bias’ which assumes that physician guidelines are by their nature more legitimate than patient responses (Chesney et al 2000:1600), with the more neural term adherence (Ley 1988, Tuckett et al. 1986), and more recently, a concordance model has been suggested which emphasizes shared goals and decision making between healthcare workers and clients (Royal Pharmaceutical Society of Great Britain 1997). This shift in the way adherence is viewed in medical circles was reflected in statements by professional caregivers and their clients in our focus groups, who often emphasized the concepts of ‘patient choice’ and ‘shared expertise’. Despite their avowed commitment to this model, however, their statements often reveled a set of assumptions about relationships and obligations more characteristic of compliance models.

Candlin and his colleagues (1998) point out that the ‘discourse of compliance’ and the ‘discourse of concordance’ have particular linguistic and interactional features associated with them regarding such things as lexical and grammatical choices and metaphorical constructions. Analysis of the statements of our participants suggests that, although they advocated the principle of ‘patient choice’, discussions of adherence tended to be couched in a ‘discourse of compliance’ in which the views of healthcare workers were assumed to be more legitimate than the views of clients. In the excerpt below, for example, while the speaker emphasizes that it is ‘up to the client to decide’, negotiating adherence is portrayed not as a shared process of decision making but instead as a process of education. Adherence is a matter of clients’ ‘ability’ to learn, ‘understand’, and follow the instructions of healthcare workers:

Nurse: They take the medicine and we have to educate them about how to take it and the side-effects and let them decide whether or not to take it. If they come every two or

three months, the time we spend on educating them is limited. How the patients

take medicine after they go home depends on their responsibility and ability.

Besides, it also depends on home care's visit or contact. This isn't something the clinic

can do. Different parties will employ different techniques to remind them to

take medicine but they have to match with one another so that the patients can

understand the importance. (Pro Caregivers Grp. 1, 993/1007)

Similarly, in the following excerpt, the healthcare worker sees her job as ‘discovering’ why clients fail to follow instructions and ‘encouraging’ them to take their medicine properly:

The key is finding out that why they are unwilling to take

medicine. We have to encourage them to take it although the side effect is

large. It takes time to do so. (Pro Caregivers Grp. 1, 970/974)

PHAs as well, often couched their discussions of medicines and treatments in a ‘discourse of compliance’, one participant, for example, referring to her ability to adhere to her treatment regimen as ‘being a good girl’. (PHAs Non-Gay < 2yrs., 815).

One of the problems with the way participants discussed adherence was the contradiction between the egalitarian relationship implied by references to ‘patient choice’ and the hierarchical relationship implied by references to ‘education’, ‘explanation’ and ‘encouragement’. Thus, while participants might have believed that healthcare workers and clients were negotiating on an ‘equal footing’, consultations around treatment options described both by PHAs and professional caregivers most often took the form of healthcare workers presenting limited options and eliciting clients’ ‘agreement’ rather than of clients themselves presenting treatment preferences to healthcare workers. This is partly the result of PHAs’ lack of sufficient knowledge to participate as equal partners in the interaction, and partly because of the traditional relationship between healthcare workers and clients which makes questioning the decisions of doctors and nurses difficult. One of the social workers we interviewed said:

SW: My clients want to try new medicine or change their medicine but do not dare to tell the AIDS unit or Queen Elizabeth nurses. Maybe Hong Kongers are afraid of doctors...they think it’s a challenge to talk to them. They are afraid the consequence will be bad if they challenge their authority. But if it is done by a third party, they can avoid

the risk. You think they shirk their duty, but I think it’s a matter of culture. (Pro Caregivers Grp. 2 1503/1511)

While it may be true that deference to authority figures is a characteristic of Chinese culture, this problem exists in almost all contexts of HIV care. In a study of PHAs in nine US cities, for example, Mouton and his colleagues (1997) found that only about 35% reported discussing treatment preferences with their doctors, and the likelihood of PHAs expressing preferences to healthcare workers diminished as the perceived power differences increased (with PHAs with less education and less money being the least likely to express treatment preferences).

The gap between the principles participants advocated regarding adherence and the ways they talked about it suggests that cultivating ‘client choice’ and ‘shared expertise’ requires not just ‘good intentions’ but a closer examination of how healthcare workers and their clients interact and how they communicate about treatment issues. In this regard, the ‘discourse of concordance’ should be seen not as a ‘philosophy’ which interactants must ‘believe in’, but as ‘a skill’ that both healthcare workers and clients need to develop.

3.4 Social Relationships

3.4.1 Social Inclusion

It should be clear by now that, rather than treating social factors--social inclusion, personal relationships, support networks and cultural and familial roles--as separate from physical and psychological conditions--these factors have a profound, over-riding impact on all aspects of QOL. HIV diagnosis has some effect on nearly all of a PHA’s social relationships, raising questions about whether or not and how much to disclose to different people, what rights and obligations the PHA has in relation to those around him or her, and how established roles can be sustained or must change in light of the PHA’s medical condition and the physical and psychological challenges which accompany it. HIV diagnosis requires PHAs to reinvent their social world (Ariss 1997), re-evaluating and re-negotiating existing relationships, and establishing new relationships with people they might never have come into contact with were it not for the diagnosis--nurses, doctors, social workers, and other people with HIV/AIDS. At the same time, it is the ways old relationships are altered and new relationships are negotiated that chiefly determines the extent to which PHAs are able to access treatment, care, and psycho-social support, and how they are able to deal with physical and psychological problems on a day to day basis. Social relationships are not simply one aspect of QOL; they are its very foundation.

Among the most troubling aspects of living with HIV noted by our participants was the sense of social isolation that often accompanied it. As discussed above this social isolation was often a result of physical changes associated with HIV infection or treatment (changes in appearance, fatigue, loss of physical strength) along with fear of rejection associated with disclosure or discovery. The financial difficulties that resulted from reduced ability to work were also seen as a factor causing PHAs to bow out of certain social activities. For some, social isolation came from actually being abandoned by friends, lovers or family members, but for most, exile was self-imposed. Like not disclosing their HIV status, self-isolation played a paradoxical role in the lives of many of our participants. Reducing contact with friends was seen, on the one hand, to diminish their social world, but on the other, as a necessary strategy to maintain their social world and to ‘protect’ both themselves and people whom they were avoiding.

Sometimes the social isolation that plagued PHAs was more psychological than physical, the feeling that when they interacted with people to whom they had not disclosed their sero-status they had to play a ‘role’ and could not be their ‘real selves’. The ‘secret’ itself was seen as a barrier to intimacy. Feelings of isolation, however, were even present in those relationships in which the PHA felt able to disclose, as significant others struggled with how to treat the PHA in light of this new information and PHAs struggled to interpret obvious or subtle changes in their friends’ or lovers’ or family members’ behavior towards them. HIV diagnosis was seen as, in a sense, inherently isolating, regardless of the degree of disclosure, since, as several of our participants pointed out, even those who ‘knew’ could not really ‘understand’ what it was like to live with HIV.

‘You can’t expect others to be able to understand you,’ said one participant .

(PHAs Gay < 2 yrs., 645/646)

Expatirate PHAs and Thai PHAs in our groups discussed social inclusion slightly more than our Chinese participants, perhaps because they often lacked the geographically present network of family members and close friends that the local participants had. More recently diagnosed PHAs also seemed more concerned with social inclusion than those who had been living with their diagnosis longer. One reason for this might be that those recently diagnosed were more likely to be feeling the sting of the initial restructuring of relationships that often comes immediately after diagnosis, associated with depression, shame, and dealing with the sometimes negative reactions of significant others. Reports of feelings of intense isolation and loneliness often accompanied stories of diagnosis, and ‘shutting oneself away’ seemed a common strategy for dealing with the initial shock of a positive HIV antibody test result.

Finally, straight PHAs talked more about social inclusion than gay PHAs. It was not unusual for the gay PHAs in our groups to have strong ties within the gay community, either through social activities or through political organizations, and most of these ties survived the trauma of diagnosis, while straight PHAs were more likely to structure their social lives around their families. Although disclosure was nearly as rare among gay participants as among straight participants, some did report positive disclosure experiences with gay friends whose level of knowledge and acceptance were seen to be relatively high. Continuing to be socially active, however, caused other problems for gay PHAs, especially in regard to things like negotiating sexual invitations, explaining visible symptoms and side effects, and refusing social invitations when the effects of the virus or the medications made them unable to participate.

3.4.2 Family Relationships

Of all the relationships our participants talked about, the relationships with family members were seen by Chinese PHAs and their caregivers as the most important and the most pertinent to issues of Quality of Life. This emphasis placed on family relationships, and problems associated with communicating about HIV in the context of the family, can be seen partly as a result of the important role the family plays in Chinese social organization, and how individual rights and obligations are structured within the family unit. While in most Western cultures, ‘social identity’ and ‘cultural roles’ are most often established around activities outside the family (primarily work and career), and, to some degree establishing an appropriate social identity requires that one separate oneself from one’s family and ‘strike out on one’s own’, in Chinese societies, social identity is inseparable from family roles--while one might sometimes define themselves as a lawyer or a student or a ‘tongzhi’ (gay or lesbian), one is always first and foremost a member of a family unit, and the demands of fulfilling one’s role in the family tends to take precedence over other social identities (Bond and Hwang 1986, Hsu 1985, Scollon and Scollon 1995, Yang 1993). Thus it is not surprising that Chinese PHAs talked about social, cultural, and familial roles three times more than expatriate Western PHAs, and when discussing relationships, talked more than five times more than expatriates about their families.

This is not to say that family relationships are somehow more ‘important’ to Chinese, or that issues like disclosure to family members are inherently more problematic. Studies in the West have also found that PHAs find dealing with their families particularly difficult (Kimberly, Serovich, & Greene 1995, Yep, 1993), and PHAs in the West are also less likely to disclose their sero-status to their family members as they are to their close friends or regular sexual partners (Hays et al.1993, Simoni et al. 1995, Stempel et al. 1995). The differences are not so much differences in the ‘closeness’ people in different cultures feel towards their families or the degree of importance they associate with family ties, but rather structural differences, differences in the way family life is organized and differences in cultural expectations about one’s behavior towards one’s family. In Chinese families, for example, love tends to be expressed to parents and older siblings through displays of dutiful or ‘filial’ behavior (hao suen) rather than self-disclosure, and to children and younger siblings through ‘care’ and ‘protection’. Self-disclosure is, in fact, sometimes frowned upon, the point of view of a single family member being seen as subordinate to the well-being of the family as a whole. According to King and Bond (1985:35), self-expression or strivings for autonomous behavior, in Chinese families ‘are discouraged or suppressed as nothing more than selfishness.’ Families in many Western cultures, on the other hand, place a great deal of importance on at least the show of ‘honesty’, love being expressed through the act of ‘sharing’ or ‘showing your true self’, with frankness and respect for individual viewpoints highly valued, especially as children reach adulthood (Carbaugh 1988). Another important feature of Chinese families is the relatively hierarchical nature of relationships within them, as opposed to the more egalitarian relationships fostered in many Western families (Scollon and Scollon 1995). In Western cultures, not disclosing HIV status to parents (or children) can be a potent source of guilt, making PHAs feel that they are violating the trust of their loved ones. Of more concern to Chinese, however, is likely to be the shame associated with disclosure within the family. Bond (1986), in his discussion of how mental illness affects Chinese families, points out that the ‘shame’ associated will illness is likely to be seen in a collective rather than individualistic way, the family ‘absorbing’ the shame of the individual (247). Not only does disclosure disrupt the family structure and jeopardize the family’s min (‘face’), it may also sometimes be accompanied by exaggerated reactions of caring or protection that restrict the PHAs freedom and sustain his shame.

One of the most difficult things about living with HIV for our Chinese participants was the degree to which it interfered with their ability to fulfill what they believed to be their proper roles in the family. Younger PHAs worried that they would not be able to bring honor to their families. Older, married PHAs worried that they could not provide their families with financial support, and women PHAs worried that they would not be able to give birth. The force of traditional family roles was sometimes seen by PHAs and their family members to interfere with their ability to give or receive care and to communicate openly about the disease. A son of an HIV positive mother, for example, described the situation like this:

F: What factor would you regard as making her talk less to you?

Son: ...Basically I would say this is because of her status as ‘the mother’.

She doesn’t want her real, weak self to be exposed to her children. Even though

I am approaching thirty, she still considers me her child. Therefore, she sees me as her responsibility rather then she, herself, as my responsibility. This is how I account for her behavior of being unwilling to talk about her emotions with me. (Non-pro Caregivers Grp. 1, 308/319)

It is not surprising, therefore, that the major reason Chinese PHAs in our focus groups gave for not disclosing to their families was not that they feared rejection or blame, but because they did not want to burden their parents and other family members with information about their infection which could potentially disrupt the harmony of the family, and even those who had disclosed their sero-status to relatives were resistant to share with them information about the pain, physical discomfort, symptoms or treatments associated with their infection. ‘If I told my family I have this disease,’ said one Chinese participant, ‘it would be like I was shirking my duty towards them. So I prefer to seek help from outsiders like nurses’ (PHAs Gay > 2 yrs., 756/760).

The concern from Chinese PHAs about being a burden on their families has two sides to it. One has to do with the emotional, psychological or financial burden taken up by the family itself. The other has to do with the burden this in turn created for the PHA, the burden of being ‘cared for’ and of carrying the shame of not being able to fulfill his or her appropriate roles within the family.

Even in cases where family members knew participants’ sero-status, things like pain, symptoms, side-effects and the taking of medicine were still often seen as things that ought to be concealed in order to avoid undue concern or worry:

Partner of PHA: When he doesn’t feel very well, he won’t let his mother or other family members enter the ward to visit him, but would ask tem to go instead. He thinks that it would be better for them not to see him cry painfully or for him to have to take the effort to explain the situation to them. (Non-pro Caregivers Grp. 1, 441/448)

There is also the possibility that disclosure to family members in Chinese culture might be perceived to carry more risk. While the psychological impact of being rejected or abandoned by family members might be the same in every culture, in Chinese societies the social consequences are likely to be greater, so much of Chinese social life being organized around the family. Severing family ties, therefore, can bring a sense of ‘cultural isolation’.

At the same time, not being able to avail themselves of the ‘care’ and ‘protection’ that were seen their ‘due’ (every bit as much as ‘duty’ and ‘deference’ were due to their families) seemed to be particularly difficult for Chinese participants to deal with:

I feel that it is really difficult for me to cope with my family. As I’ve got this disease, and I didn’t know much about it in the beginning, it really frightened me. But I couldn’t tell them my pain. In this critical moment I couldn’t have the care, sympathy and understanding from my family that I deserve. They do care for me, but that kind of care is just enough for an ordinary diseases. But for the kind of disease that I have, especially at a time when I thought that the situation was very critical, still I dared not tell them the truth. I felt that the pain was unbearable for me. (PHA Consultation, 224/239)

PHA: Why do I always have to lie to my family? When I feel pain, why can’t I tell them how I feel, just to release my emotion? Sometimes when I really cannot bear the pain, I’m afraid I’ll just cry out. (PHAs Consultation, 250/254)

One participant described this paradoxical relationship with the family, simultaneously feeling the need to disclose and the need to conceal, as living on the ‘margin of love and pain’ (loy yu tong dik binyun)* :

PHA: I think my situation would be slightly different because I have moved out from

my family since I got this disease. So there is less chance to communicate

with my family. As I am frequently being sent into the hospital, my mother

is puzzled about it. It is a hard time for me. I don’t want my family to bear it

so I keep it all to my self, just like X (another participant). At the same time, I surely I want my very close relatives to care for me when I’m sick. But I have think about the

possibility of the serious consequences that might occur after telling them the

truth, thus we are always at the "margin of love and pain". (PHAs Consultation, 288/303)

What was seen as the worst situation, however, was not having a family at all.

PHA: What I’m thinking is that this disease of mine might strike at any minute. I also worry about when I will lose my life. But I’m quite different from the others. If the disease strikes suddenly, I would have to deal with it by myself. It’s different if you have a family. If you have a family, and something unexpected happens, there is always someone there to take care of you. I am alone, so I am quite scared about this. I’m scared that someday I will have to stay in the hospital and will not be able to move around. Who will be there to look after me? This is what I fear about. I don’t fear death. I fear being alone. (PHAs Non-gay < 2yrs., 891/904)

Consequently, those who felt able to disclose to their families and had received a positive response often considered themselves extremely lucky:

I am lucky that my family members know I am gay and thus I can bring my lovers’ home. I don’t want them to have much worries for me and I’m lucky that my mom understands this disease. I felt much more comfortable after disclosing my disease to them because it’s hard to tell others about this disease. (PHAs Gay < 2 yrs., 84/89)

The participants who talked most about the effect of HIV on the family, however, were not the PHAs, but family members themselves in focus group discussions with non-professional caregivers. Disruption of traditional family roles again emerged as a primary concern. Just as PHAs found it difficult to take on the ‘sick role’ in the family, caregivers as well found it difficult to take on the new roles the situation presented to them, especially when these roles were seen to contradict already ratified familial roles. Other concerns noted by family members were feelings of inadequacy, that they were not equipped with enough information or expertise to provide adequate care or support, problems associated with dealing with medical crises, the pressures of having to act as a mediator between the PHA and neighbors, employers and other family members, and the difficulties in ‘knowing how to treat’ the PHA and interpreting sometimes subtle signal regarding needs and wants.

3.4.3 Relationships with Spouses and Partners

The most important person in the life of many PHAs is their spouse or partner. Like other family members, spouses and partners take on a variety of tasks, from physical care-giving to providing emotional support, that have an important effect on the Quality of Life of the PHA. Even more than with other family members, relationships with spouses or partners are often major determinants in how PHAs view their QOL, and difficulties within theses relationships, are often seen as major barriers to PHAs’ achieving a higher Quality of Life.

In line with other research on HIV disclosure (Green 1994, Norman et al. 1998, Perry et al. 1994, Stempel et al. 1995, Wolitski et al. 1998), the participants in our study were much more likely to disclose their HIV status to long-term sexual partners than to family members or friends:

PHA: I won’t tell others like my family until my physical state is very bad. But I have to tell my partners because I have sex with them and if I love them, I can’t let them bear the risk of being infected. I know someone who told his friend and the news was spread out. So I think if it isn’t a critical moment and I don’t need others’ help, I won’t disclose it to friends. (PHAs Gay < 2 yrs., 342/348)

Disclosure to more casual partners was much more irregular and posed much more of a dilemma for participants. Disclosure in the initial stages of relationships was seen to carry not just the risk of rejection but also the risk that the PHA’s confidentiality would be violated. ‘I met guy and he said he loved me very much,’ reported one of our participants, ‘but after knowing the fact that I am an AIDS patient, he left me at once and spread my secret’ (PHAs Gay < 2 yrs., 550/553).

Thus, participants often chose not to disclose, at least immediately, to casual partners or new romantic friends, instead opting to take responsibility for precautions themselves or to try to avoid risky sex or sex altogether. The likelihood of disclosure, however, increased if the relationship extended beyond one or two encounters, allowing the PHA to ‘get to know’ his or her partner better.

PHA3: I met another guy recently but I dared not tell him immediately because I don’t understand him well. But every time we were about to have sex, he wondered why I didn’t want to. I am unwilling to take any risks and thus tried to avoid it.

PHA1: If you meet someone whom you really love, you should set a time limit for yourself.

PHA2: It’s hard to understand a person within a short period of time.

PHA4: I let myself think of 2 months. He was calm when I told him but later...

PHA2: Why he could sense it? (PHAs Gay < 2 yrs., 560/575)

For a number of participants, disclosure of an HIV diagnosis brought on the end of a relationship, which made dealing with the diagnosis even more difficult. Sometimes it was the partner who initiated the breakup, and sometimes it was the PHA him/herself who did, citing guilt and fear of infecting his or her partner or spouse.

While most of our participants chose to tell their sexual partners, if not immediately, at least eventually, some, particularly straight, married PHAs, opted to conceal their sero-status from their partners, believing that this was the only way that the relationship could be preserved:

K: If you tell your wife, there will be a big disturbance between the couple.

W: Big chaos

Y: I dare think about it further....it would be better that they don’t know.

(PHAs Non-Gay < 2yrs., 2955/2959)

Non-disclosure to partners was more common among straight PHAs than gay PHAs possibly because disclosure within a marriage brought with it the threat of not just of jeopardizing the relationship but also of jeopardizing the harmony of the larger family unit beyond the husband and wife. At the same time, concealing sero-status from partners and spouses was particularly stressful both emotionally and logistically.

Even for those who had disclosed to partners and managed to maintain their relationships, the dynamic between PHAs and their sero-negative partners was often fraught with difficulty. Difficulties revolved around issues of sex, inequality, different strategies of coping with the infection, and feelings of guilt and worry, anger and inadequacy.

Sexual relationships with partners were often seen to change dramatically after disclosure, not just in terms of the sexual practices involved, but also in terms of the emotional dynamic. PHAs themselves often reported curtailing their sexual activities with partners or spouses out of feelings of guilt or fear of infecting their partner. They also sometimes felt that their partner’s attitude towards sex and willingness to engage in it had changed.

One of the most difficult aspects of maintaining personal relationships from the point of view of PHAs was the feeling of inequality that emerged as a result of their infection, the feeling that they ‘needed’ their partners more than their partners ‘needed’ them. ‘You don’t have the choice’, said one PHA, ‘ but he has’ (PHAs Gay < 2 yrs., 390). Loss of feelings of security in relationships and fears of being abandoned by partners were common. Another PHA said, ‘One minute they might be with you, and the next moment they might be gone’ (PHAs Gay < 2 yrs., 316). This uncertainty seemed particularly characteristic of our gay participants, partly because gay relationships themselves were seen by some as inherently less stable. ‘I know that relationships for gay people can’t last,’ said one gay participant, ‘and I understand the importance of taking care of myself’ (PHAs Gay < 2 yrs., 334/335).

The biggest difficulties faced in sero-discordant relationships had to do with issues of ‘talking’, ‘honesty’ and ‘openness’ (see 4.3.1 below). Sometimes these problems revolved around disclosure of sero-status itself, with PHAs struggling over if, when and how to tell their partners, and partners struggling with anger or disappointment about not being told sooner. More often, however, feelings of frustration were the result of the belief that one or the other partner was not being completely ‘open’ about his or her feelings and that this made it difficult for the couple to work together to solve common problems. Spouses and partners frequently reported that their sero-positive partners’ seemed unwilling to talk about the disease and things associated with it like negative emotions, fear, death and the future. At the same time, sero-negative partners were ambivalent about introducing these topics themselves, not wanting to create even more stress for the PHA than s/he was already feeling. PHAs, as well, sometimes felt their partners were not completely honest with them, especially about sexual activities. ‘He is afraid of you but doesn’t dare to say so because he doesn’t want to hurt you’, said one participant, ‘so you have to observe him’ (PHAs Gay < 2 yrs., 588/589).

Part of this difficulty around talking about HIV came from differences in the strategies partners used to cope with the infection Sereo-negative partners often took a more ‘activist’ approach (Anderson 1992a), encouraging the PHA to be proactive in seeking treatment and information and in talking about symptoms, negative feelings, fear of death and ‘the meaning of life’. Some even accompanied their partners on clinic visits or helped them make lists of things to ask the doctor to make sure they ‘got it right’, or took it upon themselves to disclose their partner’s sero-staus to healthcare workers or family members. PHAs on the other hand, often preferred to deal with their difficulties themselves or to seek help from outsiders, and sometimes complained that their partners ‘didn’t understand’:

F: But you don’t want to let him know that you sweat...

PHA: I can feel that he is concerned about me. But the problem is that what

he wants me to do is useless. He thinks I’m just not listening to him if I don’t consult a doctor. He doesn’t understand. (PHAs Gay > 2 yrs., 47/54)

In many cases, the PHA’s spouse or partner was one of the only people in the PHAs’ life outside of the clinic who knew about the PHA’s sero-status, and this ‘privileged position’ was sometimes seen to bring with it particular stress and feelings of responsibility. Partners and spouses had to play multiple roles, to function as the PHA’s primary caregiver, cook, housekeeper, to provide the bulk of the PHA’s emotional support, and to act as the main mediator in relationships with family members, friends, employers, and healthcare workers. One participant justified his decision to disclose his partner’s sero-status to his sister like this:

Finally he had to enter the hospital. I thought the situation cannot go on like this because it was impossible for me to handle this kind of situation all by myself. I thought that at least one of his family members should know about the situation, and so I talked about it with his sister. (Non pro Caregivers Grp. 1, 408/414)

Power differences were also a concern for sero-negative partners, but their perspective on power was different from that of PHAs. Rather than seeing themselves as more powerful, they saw their sero-negative partners as more powerful; because of their partner’s infection they sometimes found it difficult to refuse requests or to ‘live their own lives’ and believed that their partners sometimes took advantage of this situation.

3.4.4 Relationships with Other PHAs

Among the most important relationships PHAs talked about were their relationships with other PHAs, and it was through these relationships that feelings of loneliness and social isolation were often alleviated. HIV diagnosis almost always results in a redefinition of one’s self-image and one’s social roles as PHAs search for a way to make sense of their condition. Other PHAs serve as role models both for understanding and predicting physical changes and learning how to cope, both psychologically and socially. ‘Becoming a PHA’ involves more than just an HIV diagnosis; it involves a gradual and often ambivalent process of socialization into a new ‘culture’ (Ariss 1997).

The ambivalence involved in this process emerged time and again in our focus groups discussions with PHAs as participants sought to reconcile issues of individual and collective identity. On one hand, they emphasized their solidarity with other PHAs and the important role this played in helping them cope with their infection. On the other hand, they also sought to distance themselves from other PHAs, emphasizing the uniqueness of their individual circumstances and problems.

Participants often described their interactions with other PHAs as bringing feelings of ‘safety’, ‘acceptance’, ‘relaxation’ and, ‘something to depend on’. Relationships with other PHAs also played a role in helping participants understand their disease better, adhere to their treatment regimens and deal with psychological crises. Often meeting other PHAs shortly after diagnosis was portrayed as a kind of emotional turning point. Finally, interacting with other PHAs afforded participants a way to resist labeling and stigmatization through what Goffman (1963) calls ‘the collectivization of experience’.

PHA1: Yes, it’s good. When we come together, we can have something to depend on. This can release our suffering from the disease. The time goes faster. If not, it’s very boring and numb for us to stay at home.....(laughter)

PHA2: It’s really boring to say at home all the time.

PHA3 Surely it is boring.

PHA1: Sometimes we can share our happiness together. (PHAs Non-gay < 2yrs 67/74)

Sharing of medical information was one of the most important aspects of PHAs’ interaction with one another. In the face of uncertainty and ambiguity regarding their prognosis from medical professionals, other PHAs provided them with concrete images of ‘the HIV infected body’ against which to measure their own physical condition. Often this resulted in renewed optimism when they witnessed their peers exhibiting health and vitality:

I had been very pessimistic. I couldn’t see the future and I thought I would die in two years. But just at this time, I met a lot of new friends. Some of them had had the disease for seven to eight years, but they were still very strong and vigorous, looked so healthy. They gave me a good example. (PHAs Non-Gay < 2yrs., 3017/3023)

Interactions with other PHAs, however, were not always described as positive, and some participants admitted to avoiding other PHAs or feeling uncomfortable talking to them. One reason was that, just as knowing other PHAs who were healthy and coping well could increase self confidence, witnessing their peers struggling with severe health problems or watching them die brought on feelings of anxiety and fear. Others had difficulty interacting with other PHAs because of their own negative perceptions of the virus and the people and behaviors associated with it:

Son of PHA: It’s quite funny. She still considers the disease something very negative, please don’t mind me saying this, that it is something always related to people who are promiscuous or those gay people. She understands that she is a sufferer. She has no problem with that. She knows that she’s not that kind of person. But after all the disease is related to those kinds of things. Therefore, she can’t overcome her feelings.

When the AIDS prevention commercials come on TV, she changes the channel every time. Sometimes I catch her changing channels (laughter). So she ....

Man: She doesn’t want to face...

Son: (laughter) She doesn’t want to see them. In fact, I made her go for checkups on Saturdays for the sake of both of us. I understand her condition and I can accompany her. But, and.. please don’t mind me saying this. I’m completely accepting of these kinds of things and I would not discriminate against anybody. But for her, she discriminates against these people. It’s very obvious that when she sees these people she becomes very unpleasant and unnatural.

Man: She sees herself as different from them…

Son: That’s right. (Non pro Caregivers Grp. 1 630/685)

Finally, reluctance to interact with other PHAs was seen as part of a strategy to maintain a ‘normal’ life, other PHAs serving to unnecessarily remind participants of their ‘new identity’: ‘At the beginning I accepted other patients because I wanted to talk with them,’ said one participant, ‘but later I avoided them because I didn’t want to always be reminded’ (PHAs Gay < 2 yrs., 618/619). Another said, ‘I joined one meeting like this one in Canada and we shared many problems. However, I don’t want to join this kind of activity many times because I don’t want to be reminded that I have AIDS’ (PHAs Gay < 2 yrs.txt 686/689).

Reluctance to interact with other PHAs was particularly characteristic of more recently diagnosed participants, and those who had been living with the virus longer sometimes talked about their own initial reluctance to join PHA activities after their positive test results. Particularly for asymptomatic PHAs, joining such activities often symbolized taking on the identity of ‘a patient’, an identity that they wanted to resist for as long as possible. Integrating into the ‘PHA community’, or, as our participants put it, ‘becoming a member’, was also associated with a kind of ‘culture shock’ (Kreps and Kunimoto 1994), a feeling of being overwhelmed by the need to deal with new forms of interaction and new kinds of social identities.

For those participants who interacted frequently with other PHAs in the context of support groups and NGO or clinic sponsored activities, the advantages of the support and care they experienced were seen to outweigh the above concerns. This interaction, however, was not seen as devoid of difficulties. Some mentioned that, along with the sense of solidarity, there was also sometimes a sense of competition as they shared their difficulties:

PHA:I think members can help but also attack each other.

F: Examples?

PHA: If someone says he is suffering, another will say he is suffering more. Some don’t comfort you if you are suffering but laugh at you instead. (PHAs Non-Gay > 2 yrs., 1157/1161)

There was also sometimes a sense of jealousy when PHAs felt that their peers had more access to care and support, especially from friends and family members, than they did:

As for me at that time, I also dared not tell my family that I was sick, so they seldom came and visited me. It was very miserable for me. Therefore I was very jealous when he stayed in the bed next to me. His friends kept coming to the hospital to visit him. Some of the people brought him soup, and some brought him congee. But I got nothing. It was so miserable for me. (PHAs Non-gay < 2yrs., 916/922)

Sometimes shows of solidarity, especially when they came in the form of advice, were seen to violate participants’ sense of ‘independence’ (Scollon and Scollon 1995). As PHAs interacted in our focus group discussions, they continually resisted applying other people’s solutions to their own circumstances. ‘I’m not like you,’ or ‘your situation is different from mine’ were frequent responses when participants shared their coping strategies, and they were particularly resistant when they felt one PHA was trying to ‘represent’ or impose his views on others:

PHA1: My case is different...

PHA3: You are different because you don’t need to take medicine.

PHA1:I choose not to take it.

PHA3:You can do fine for a long time even if you don’t take it.

PHA1: I open myself=

PHA3: No, not because of that=

PHA1: You just open half of yourself=

PHA3: We are open=

PHA2: I don’t think he opens himself thoroughly...

PHA1: It’s not true to say someone opens himself thoroughly...I open

myself 80%.

PHA2:You say we are ‘that kind of people’ so I can say you haven’t opened

yourself.

PHA3: You still categorize us. (PHAs Gay > 2 yrs., 224/264)

So you cannot use your example to attack me for not having perseverance and not having confidence to learn what Master Lo teaches. How can you sneer at me for giving up....you say that I’ve got no confidence and perseverance to learn Qi Gong, but you’ve got to know that you are a very special case. Even normal young people cannot walk faster than you, not to mention us. (PHAs Non-Gay < 2yrs., 777/783)

Participants were particularly concerned when they felt other PHAs were portraying their own views and experiences as representative of PHAs as a whole, especially in their interactions with non-PHAs, and often reminded one another in the discussions that the views expressed were individual views and that they ‘couldn’t represent all patients’.

The difficulties expressed by our participants are typical of situations in which stigmatized individuals come together to negotiate a ‘shared identity’ (Goffman 1963). On the one hand, this shared identity becomes an essential tool in dealing with stigma. On the other hand, it is a threat to individual autonomy. Becoming a ‘member’ requires the uncomfortable choice of taking on the stigma itself, HIV infection, as a maker of identity (Goffman 1963, Small 1997). While PHAs in some Western countries have a long tradition of ‘identity politics’ (Samson 1993) by people with disabilities, gays and lesbians and racial minorities, providing PHAs with a precedent for community building, in Hong Kong, public identities, particularly when they are ‘deviant’ identities, based on attributes other than family ties or school or workplace affiliation are still relatively rare (Bond and Hwang 1986, Jones et al. 1998, Lau and Kuan 1988).

Just as with primary caregivers, PHAs relationships with one another were negotiated through a dialectic of ‘approach and avoidance’. In some ways, however, this negotiation was even more problematic as PHAs were not bound to one another by socially ratified relationships (such as kinship or professional ties) with clearly established roles and expectations. A community of PHAs is in many respects an ‘accidental community’, often involving members whom, in other circumstances, would not have been thrown together, and members often bring to the community very different ‘cultures’ and sets of expectations about how to communicate and interact. Under these circumstances, establishing solidarity while at the same time maintaining and respecting individual differences can sometimes be a delicate balancing act.

Many participants saw their coming together as important not just for providing support and mutual care, but also for finding ways to communicate their needs and problems to others. In a situation in which the fear of disclosure and stigmatization constrained their individual voices, developing a ‘collective voice’ gave them a way to negotiate Quality of Life issues like access to care, social discrimination and Government policy. This ‘collective coming out’ currently being navigated by PHAs in Hong Kong will doubtless have an important affect on the social environment around HIV and AIDS and may act as a precursor to more opportunities for successful individual disclosure.

3.5 Work Ability and Financial Problems

Perhaps it is surprising, given the relative affluence of Hong Kong and the provision of low cost medical care and treatment, that financial difficulties emerged as such an big concern for PHAs in our study. The primary reason for financial difficulties experienced by our participants was what they perceived to be their diminished capacity to hold down a job. Sometimes this diminished capacity was a result of actual physical or cognitive problems resulting from HIV or antioretroviral treatments. Usually, however, these physical challenges were only part of the picture. Along with them, and often related to them, were the significant psychological and social challenges involved in reconciling the constraints imposed by HIV infection or HIV medications with the demands of work:

My work has been affected to a large extent. There are many people in my work place and they can notice the changes brought by the medicine. I feel better one day and worse the next. I become angry. I always forget to do things. My job is very competitive but I don’t have enough energy to deal with it. My colleagues ask what problems I have and I don’t know how to reply to them. I feel bored and want to hang around but my physical state can’t support this. (PHAs Gay < 2 yrs., 27/35)

One of the main factors behind feelings of diminished work capacity was the fear of disclosure. Sometimes, the stress involved in negotiating the taking of medication in the workplace and in concealing or explaining visible symptoms or side-effects was seen as just as debilitating as manifestations of illness or side-effects that impaired physical or metal functioning:

Just think about it. The pressure is so big that it’s so hard to work. If you take the medicine to the office, your boss and your colleagues will see you taking medicine. How can you explain it to them? If they knew more about the disease and that it’s not necessary to be afraid, then they would not be scared. But now you’re so scared others would know, and if they know, there will be no place that you can go in Hong Kong. (PHAs Non-Gay < 2yrs., 915/921)

Despite the legal protection afforded to PHAs in Hong Kong under the Disabilities Discrimination Ordinance, not a single participant was confident that they could avoid dismissal in the event their condition was discovered by employers or colleagues. ‘ Even if you can find a job,’ one participant insisted, ‘when others know about it, you would definitely lose the job. (PHAs Non-Gay < 2yrs., 135/136). Other participants had similar fears:

In this society, I don’t believe any company would employ you knowing that you’ve caught such a disease (laughter) if you say it out… (PHAs Non-Gay < 2yrs., 359/362)

If you are working in certain organization and you say it out, even if you are working for the Hong Kong government, the biggest employer in Hong Kong, if you say it out, I think the government department would fire you. (PHAs Non-Gay < 2yrs., 508/512)

Just imagine you teach in the school, the parents! "Oh you will infect my son! You are an alien!" (PHAs Expatriates, 902/903)

We want to find jobs because our health is not bad, but when looking for a job, we are so afraid that people will find out about our condition. Those people would be so scared that no one would employ us. There is so much discrimination out there. Even if you can perform very well on the job, and the organization had promised to employ you, once they find out that you’ve got such a disease, they would definitely go back on their word immediately. So there are pressures from different directions. (PHAs Non-Gay < 2yrs., 120/129)

Sometimes, just the act of applying for a job presented significant problems:

PHA2: When I fill in the application form for a job, it asks if I have been

admitted to hospital for more than seven days in the year. What should I write? I won’t

write down ‘no’. But I ought to write more if I say ‘yes’. So I always leave the

space blank. I don’t want to tell lies. But this can’t be avoided. I have to

fill in such forms on many occasions.

PHA1: Did they ask you later?

PHA2: No.

PAH3: Sometimes they will ask what disease you have if you haven’t worked

for almost a year.

PHA2: I tried telling them that I had problems in my lungs at the beginning but

that didn’t work because they were afraid to hire me because they were afraid my lung disease would be transmitted to others. (PHAs Gay > 2 yrs 157/189)

Another barrier to working was the necessity for PHAs to access medical services during working hours. ‘If you can find a job,’ asked one, ‘how can you go to the clinic regularly?’ (PHAs > 2 yrs.,194/195)

For those participants who were or had been out of work, public assistance was often an alternative, but the amount was seen as insufficient to meet their needs and applying for public assistance often meant maneuvering through a complicated bureaucracy. One of the social workers we interviewed, for example, told the following story:

Recently the SSA is very strict and has to cut many services. I have a client who has leg problems. He is unlucky because he has joint problems and lost his leg in February and has to use crutches. It’s troublesome to buy crutches because he needs a doctor and physio-therapist to write notes for him and he has to hand in many forms. Actually the procedure is simple. He only needs a file opened by a social worker in the hospital. Once he explained that he couldn’t go to the clinic because he couldn’t walk. He applied for SSA and wanted to claim the taxi fare. But unfortunately the head was not around and his claim was cut. You know, they have to hand in a doctor’s note, receipt and taxi’s slip to claim money. It is not as easy as it was in the past. (Pro Caregivers Grp. 2, 611/628)

Issues of public assistance were closely connected with how illness and disability were defined, and whose definition (the client’s or the caregiver’s) was more valid. A ‘healthy’ PHA from the point of view of a health care or social welfare worker, for example, might ‘feel’ unable to work for a variety of physical and psychological reasons, one of the chief ones being the often debilitating side-effects of the very medicines that are keeping him or her ‘healthy’:

Because of this, you lack a confidence for working, then it is very difficult to find a job. However, not all of us are qualified to claim public assistance from the government. So it’s very difficult for us who don’t qualify for public assistance but find it difficult to live without public assistance. This pressure is very great. (PHAs Non-Gay < 2yrs., 788/794)

At the same time, there were doubts in the minds of a few of our participants as to how fair and impartial the ‘gatekeepers’ to public assistance were, especially the doctors who control the ‘definition’ of ‘disability:

Man3: The doctors will judge it. If they think you are physically disabled, then you are. I know some people who seem to be normal but their doctors declared them physically disabled. The doctors have much power and can control many things.

F: They have a standard to decide how much you can get.

Man3: There are no rules. It depends on the relationship you have with them.

Man2: They judge it.

Man3: I know a patient who was poor and he got nothing and he was later approved by the doctor and got double the subsidy. It depends a lot on the relationship. (PHAs Non-Gay > 2 yrs., 470/489)

Being out of work was not only seen as heavily influenced by fears of disclosure, it was also seen as making issues around disclosure to friends and family members even more complicated. Explaining to friends and relatives why they were out of work and asking for financial help from people to whom they had not disclosed were seen and particularly difficult. ‘If your relatives ask you what your job is every year, and you just tell them you are looking for a job,’ wondered one participant, ‘ what are they going to think?’ (PHAs Gay > 2 yrs., 811/813). In addition, financial worries often brought to PHAs feelings of guilt for not being able to contribute financially to the family or being a financial burden on them.

Financial difficulties also affected availability and quality of care, limiting participants’ ability to visit private doctors or dentists to avoid the long waits involved in public clinics and hospitals, or to access alternative treatments like traditional Chinese medicine.

Finally, financial problems were seen to limit social inclusion, making it difficult not just for participants to go out to eating or entertainment venues with friends, but even to join clinic and NGO sponsored activities for PHAs:

PHA: I believe that it is the truth. If you could really organize some activities, that would be very helpful to us the patients. But even if the activity is helpful to us, our ability is limited if we have to pay for our own costs, even if it is a very small amount indeed. As for me, there are many things that I’m not able to do. I’ve had numerous kinds of diseases, and I can’t work all the time, so there is definitely problems in my living. For the other patients, they can’t find work to do even if they are able to do it. Their ability is limited just as much as if they were sick. Therefore our sources of income are limited. If you ask us to pay even just twenty dollars, it might be very demanding. (PHAs Non-gay < 2yrs., 39/50)

3.6 Negative Feelings

Like most aspects of living with HIV, the issue of negative emotions cannot be effectively quarantined from other facets and domains. Negative feelings are not discrete ‘psychological’ entities that can be understood and dealt with in isolation from their causes in and effects on physical health and social functioning. Some psychologists, in fact, are increasingly coming to regard emotions as social rather than psychological in nature, arising out of social conditions and heavily dependent on cultural models (see for example Harre and Parrot eds. 1996). It is also important to remember that emotions are reciprocal: people observe, interpret and play off of other people’s emotions. So, an examination of negative emotions and their effect on Quality of Life would be incomplete without considering the negative emotions experienced by or perceived from other people, as well as those experienced by people with HIV/AIDS themselves.

Fig. 5 Negative emotions expressed by PHAs (as lines of coded segments)

Figure 5 shows a summary of the amount of time PHAs in our focus groups spent talking about various negative emotions, the lighter bar indicating how much these emotions were attributed to themselves and the darker bar showing how much they were attributed to other people. On the whole, emotions associated with anxiety were more predominant than those associated with depression. The emotions discussed most frequently were fear, pressure, worry and anger.

Although sometimes these emotions came from physical problems (symptoms and side effects) or psychological issues (guilt, fear of death), their source was most often portrayed as social. As with the other facets we have examined, negative feelings were closely related to difficulties in disclosure and social stigmatization, as well as difficulties in maintaining and finding satisfaction in personal and familial relationships.

When PHAs talked about their own worries and fears, they talked most about the fear of being ‘discovered’ by friends or family members, the fear that others would disclose their secret, the fear of being rejected, the fear of being a burden on their families, the fear of infecting their partners or lovers, the fear of losing their jobs, the fear of being talked about behind their backs, and the fear of not receiving adequate care, particularly in critical moments. The most persistent fears, though, seemed to be those related to disclosure and discovery. ‘It’s not a matter of whether others find out or not, said one participant, ‘the point is, in your heart you always fear that people will find out’ (PHAs Non-Gay < 2yrs.,139/141).

Fear of disclosure bred other fears, like the fear of making new friends or of accepting invitations from old ones, the fear of taking medicine in public or being seen accessing facilities for PHAs. Although many mentioned that they feared death, a worse fear was to die alone.

Just as many of these fears had their source in social interaction, they also had social consequences, leading to social isolation and making it difficult for PHAs to access emotional and psychological support. Fears associated with social interaction also affected PHAs’ ability to access medical care and to negotiate successfully with healthcare workers.

Almost half of the time PHA participants talked about fear, however, it was not their own fear they were talking about, but the fear that others felt towards them. Sometimes this fear was attributed to individuals, healthcare workers, sexual partners, friends and family members, and sometimes it was discussed as a society-wide phenomena, an atmosphere of fear surrounding the disease itself. Mostly they attributed this fear to ignorance. Several believed, however, that its source was ‘education’, specifically the ‘fear tactics’ used in many of the Government’s AIDS prevention messages:

PHA1: Originally the government’s position was to make the public focus on the problem, asking the public not to be so sexually active, something like that. Maybe they didn’t mean to scare people, but sometimes it’s difficult to prevent.

PHA2: It’s been too scary.

PHA1: They have scared the people so much that that they have lost their minds, and can’t think rationally about the disease. (PHAs Non-Gay < 2yrs., 2777/2783)

When the government promoted the disease before, they used a pyramid as the symbol, and they exaggerated the disease. Now whenever people hear of the disease, they think that the disease is so contagious that merely sitting beside me would infect them. People feel so panicked about it. (PHAs Non-Gay < 2yrs., 156/161)

Other people’s fears created almost as many barriers to QOL for PHAs as did their own fears, making it difficult, for example, for them to access quality care outside of HIV specialist settings and to build strong and reliable support networks. It also had serious consequences on their feelings of self-esteem and their ability to perform appropriate social, cultural and familial roles.

Another common emotion discussed by our participants was ‘pressure’ (at lek). ‘Anyone who has this disease and says they don’t feel pressure must be lying,’ said one of our participants. (PHAs Non-gay < 2 yrs., 869/871). Pressures they described included the stress of concealing their condition from others, of worrying about the consequences of their infection on future health and financial stability, of not being able to fulfill important roles in the family and in society, of not being able to find work and of having to deal with complicated doses of HIV related medication and information. Again, at the source of much of this pressure were issues regarding disclosure: ‘The biggest psychological pressure,’ said one participant, ‘is caused by the society’ (PHAs Non-Gay < 2yrs., 140/142)

Several of the participants associated pressure with treatment issues, taking medicines, visiting healthcare workers and waiting for the results of clinical tests:

Well...Taking medicine is very difficult for me. It requires me to take it on time, but I’m not a good patient and I find it very troublesome. Also, some of the medicine is taken before meal and some after meal, it’s too hard for me (laughter). Especially when you are busy working, how could you have the heart to remember what time to take medicine. I try to pay attention to the exact time for taking medicine. But when you have many things to do, you will find it a very great pressure to set the alarm watch again and again. And I have to explain to my company why I take medicine, and this is equally troublesome for me. (PHAs Non-Gay < 2yrs..txt 833/844)

There are some pressures recently as I have to do the blood test and read the reports. Sometimes the results are really poor, but sometimes it’s better again. It is very difficult for me. I have to keep saying to myself that the condition can go up and down again and again. I find it very hard. So I really want to escape and not to see the doctor..(laughter). But now it’s better and I’m a good girl again. (PHAs Non-Gay < 2yrs., 807/815)

The pressures surrounding treatment were never simple. They involved not just cognitive issues (remembering to take medicine on time, feeling anxiety about the results of CD4 and viral load tests) but social issues as well (managing symptoms, side-effects and health related information in their interactions with healthcare workers, family members, partners and friends), something healthcare workers must remember as they help PHAs adhere with their treatment regimens. The social pressures around taking medicine can come not just from people at home or in the workplace who do not know of the PHA’s sero-positivity, but also from healthcare workers themselves, and PHAs might be reluctant to talk openly with doctors and nurses about missing doses or modifying their schedules if they feel such disclosure will result in rebuke. Central to the pressure associated with treatment was the fear of ‘judgment’, whether that judgment came in the form of the suspicious looks of people who did not know of their condition or in the form of perceived ‘surveillance’ from their caregivers.

Another kind of pressure discussed by our participants and also associated with caregivers was the pressure to display what caregivers (and other PHAs) recognized as a ‘positive attitude’. Central to the ethos of both the PHA’s and the caregivers that we interviewed was the notion that one’s ability to cope with HIV infection depended crucially on the attitude one took towards it. The category of attitude was one of the most heavily coded of our empirical categories. Research in HIV infection and other severe or chronic diseases has shown that this is indeed true, that attitude plays a major role not just in day to day coping but alson in physical functioning and recovery (see for example Greer 1979, Pettingale 1984). For our participants this ethos clearly encouraged self reliance and provided hope in the face of the many uncertainties involved in living with HIV. At the same time, however, the elevation of ‘positive attitude’ to the state of a ‘community value’ and the emergance of what one might call a ‘discourse of positive attitude’ that pervaded support group meetings and clinical consultations can create a social atmosphere in which PHAs might find it more difficult to express negative emotions, a kind of stigmatization of sadness. In focus groups with PHAs, discussions of ‘positive attitude’ sometimes led to conflicts among participants when what one member intended as encouragement was heard as a kind of criticism. What Anderson (1992) calls the ‘tyranny of positive attitude’ can sometimes serve to reinforce an perception of disease that emphasizes individual responsibility over social forces, leading to a subtle guilt when participants do not display a level of coping and positive attitude which they believe those around them expect.

Underlying all of these specific stressors in the PHAs daily life was a more general feeling of pressure which came from the constant awareness of their situation, the psychological burden of carrying the virus:

Therefore I always feel that this is a kind of threat. In our daily lives, some people say that sorrow follows extreme pleasure. But this is not true for me. I always feel that the threat is very close to me. Even though you might feel very happy, once you think of the fact that you have caught the disease, you would become very unhappy immediately. (PHAs Non-gay < 2yrs., 2-771/777)

Just as PHAs were as concerned with other people’s fears as they were with their own, they also spent almost as much time talking about the worry and pressure experienced by those around them as they did about that which they experienced themselves. They were particularly concerned about the emotional and financial strain their condition created for partners and family members. This concern resulted in additional pressure on PHAs themselves, and, as discussed above, concealing their condition or HIV related pain or symptoms was seen as a strategy for avoiding this pressure. ‘I won’t tell my family so I won’t have so much pressure,’ one of our participants remarked (PHAs Non-Gay < 2yrs., 2949/2950).

This strategy, of course, was a Catch-22, as PHAs traded in the pressure of worrying about the feelings of those who knew for the pressure of worrying about how to keep them from knowing.

The third most frequently expressed emotions was anger. Some participants expressed anger towards particular individuals whom they felt had discriminated against them or betrayed them, towards institutions, and towards society as a whole for not accepting them. More often, though, this anger was not directed at specific parties, but rather was an anger towards the virus, their predicament, or, more often, an anger towards themselves. Non-professional caregivers also noted difficulties in dealing with flare ups of temper and moodiness from PHAs. Often this anger was a way of coping with pressure or frustration at physical, metal or social limitations. Just as with other emotions, PHAs were also significantly affected by others’ anger towards them, the anger of spouses, family members and healthcare workers, and avoiding this anger was yet another reason for concealing things.

One of the biggest factors leading to negative feelings was the uncertainty associated with living with HIV. This uncertainly pervaded the physical domain as PHAs struggled to accept the unpredictability of HIV infection and it’s treatments, the social domain as they constantly wondered how much they could reveal to others and tried to second guess what other people’s reactions towards them might be or mean, and the psychological domain as they worried whether rejection from loved ones or bad news from physicians was just around the corner.

I was in holiday and started coughing, I could only stay for a few days because I was thinking, ‘Oh my god! I maybe I’ve caught tuberculosis. You got to be careful about that because, as you say, you can think yourself in perfect condition one day, and the next ... (PHAs Expatriates, 353/356)

PHA1: As for me, what scares me most is, just as what they always talk about, the possibility that the disease could strike unexpectedly. Just as X (another participant) said, though now she doesn’t have any symptoms, what she is scared of most is the unexpected.

F: Something you can’t predict.

PHA2: Yes....that’s the truth.

PHA3: Yes, you cannot predict anything. Even though you are very vigorous for the time being, you can’t predict what might happen. (PHAs Non-gay < 2yrs., 677/685)

Not knowing if there will be a cure for the disease is one thing. But when I can leave the hospital, I really have many troubles in my mind. What should I do? Now I’m leaving the hospital. What should I do? I dare not to have sex (laughter), but I really have that urge in me. What should I do? So I feel very annoyed. This is very annoying to our emotions and our state of mind. (PHAs Non-gay < 2yrs., 229/235)

You start to think everything is because of the HIV. You get tired and you think it’s because of my HIV, but other people at work are just as tired. So you got to be careful. (PHAs Expatriates, 360/362)

Living with HIV is a virtual ‘study in uncertainty’; uncertainty accompanies it from the very beginning as clients wait for anti-body test results; it accompanies diagnosis as they wonder how they were infected and how long they have been infected; it fills the asymptotic period as they worry about potential medical problems and rejection from loved ones, and it manifests with every symptom and side-effect as they wonder what the symptom or side-effect might mean to their future health and well-being (Alonzo & Reynolds 1995, Brashers et al. 1998). Studies of HIV-related uncertainty have shown that uncertainty is negatively associated with Quality of Life (McCain & Cella, 1995) and psychological adjustment (Ramsey, 1990). Uncertainty has also been linked with the level of desired communication with healthcare workers (Brashers et al., 1996). Our participants as well, felt sometimes that the answers given to the by healthcare workers and the information they obtained about their own condition (like the results of clinical tests) and HIV infection in general sometimes served to increase rather than decrease their feelings of uncertainty. The uncertainty of not knowing the condition of one’s health, for example, was not always relieved by learning one’s CD4 and viral load results, but rather replaced with a new uncertainty as to how those results should be interpreted. Although antiretroviral therapies hold the promise of improved survival, ambiguity about the durability of treatment response and ultimate survival sometimes add to the level of uncertainty with which PHAs must cope (Brashers et al 1999).

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* The title of a song by local pop singer, Faye Wong.