‘Doing’ chronic illness? Complementary medicine use among people living with HIV/AIDS in Australia
Address for correspondence: Rachel Thorpe, Australian Research Centre in Sex, Health and Society, La Trobe University, Level 1, 215 Franklin St, Melbourne, Victoria 3000, Australia
This article takes the use of complementary medicine by a group of people living with HIV/AIDS as the starting point for exploring the options for living with chronic illness in contemporary western societies. Some authors have suggested that the situation of living with chronic illness may not be a significant departure from the process of negotiating choice that is theorised to be a defining feature of late-modern society and that there are now many ways of living with or ‘doing’ chronic illness. This article uses these theoretical concepts to explore the experiences of people who have lived with HIV/AIDS for a number of years. It is argued that while different options for managing chronic illness may exist, it is not always possible or desirable for individuals to put these choices into practice. The article is based on 18 qualitative interviews with people living with HIV/AIDS who were using complementary medicine.
Reports suggest that a high proportion of people living with HIV/AIDS (PLWHA) use complementary medicine (CM) and that the majority use these practices in addition to biomedical treatments for HIV (Gillett et al. 2002, Foote-Ardah 2003, Fairfield et al. 1998, Pawluch et al. 2000, de Visser et al. 2000, de Visser and Grierson 2002). While these studies have established that PLWHA commonly combine CM with biomedicine, what is less clear is how this pattern of usage fits with theories about living with chronic illness in contemporary society, in particular the idea that there are now increased options for living with and managing chronic illness (Williams 2003, Kelly and Field 1998). This study examined how a group of 18 PLWHA discussed their health management, particularly their use of CM, and their attitudes towards CM practitioners and biomedical doctors eight years after the introduction of combination antiretroviral treatment (ART) for HIV. This analysis suggests that diagnosis with chronic illness continues to be a disruptive experience for the majority of people and therefore involves adopting new perspectives on, and approaches to, health and illness. It is argued that while different options for managing chronic illness may exist, it is not always possible or desirable for individuals to put these choices into practice. Living with serious life-threatening illness, particularly the physical effects and the desire to lead a normal life, all influence the potential for individuals to negotiate choice.
HIV as a chronic illness
The success of ART in suppressing replication of the HIV virus, thereby slowing the rate of progression from HIV to AIDS, was first demonstrated in 1996 (Pierret 2000, Kippax and Race 2003, Green and Smith 2004). Since this time, widespread uptake of ART in Western countries such as Australia has been associated with significantly reduced HIV/AIDS-related morbidity and mortality (Law et al. 2000). Recent surveys estimate that in 2006, between 60 per cent and 80 per cent of PLWHA in Australia were using ART (NCHSR 2007).
Due to the effectiveness of ART in slowing the progression of illness, the current dominant narrative around HIV in Western societies is that it is a manageable chronic illness (Green and Smith 2004, Siegel and Lekas 2002, Moatti and Souteyrand 2000, Carricaburu and Pierret 1995, Nokes 1998). However there continue to be many uncertainties associated with living with HIV and using ART in the long-term (Siegel and Lekas 2002). As there is still no cure for HIV, ART must potentially be taken for life (Powderly 2002). While some people tolerate these treatments well, up to 40 per cent of those using ART experience side effects, while more than one-third of PLWHA do not respond to treatments in the short term, and a further percentage will experience treatment failure after initial success (Green and Smith 2004, Moatti and Souteyrand 2000, NCHSR 2007). There are also considerations of compliance with ongoing treatment regimens. Furthermore, given the relatively recent development of ART and re-definition of HIV as a chronic illness, the physiological effects of long-term exposure to these treatments are still emerging (Moatti and Souteyrand 2000, Carricaburu and Pierret 1995, Powderly 2002). Although new medical technologies have been incredibly successful in prolonging life for PLWHA, they have also created new uncertainties (Powderly 2002, Walensky et al. 2006). As the course of HIV illness continues to vary considerably between individuals, the themes of uncertainty, risk and trust in expertise remain highly relevant to the lives of PLWHA (Nokes 1998, Siegel and Lekas 2002, Green and Smith 2004, Powderly 2002).
Defining Complementary Medicine
The World Health Organisation defines Complementary and Alternative Medicine as ‘a broad set of health care practices that are not part of that country's own tradition and are not integrated into the dominant health care system’ (World Health Organisation 2000). While grouping a diverse range of practices under the CM umbrella serves to emphasise the differences between CM and biomedicine, in practice the boundaries between these categories are less clear.
Many CM practices have in common a set of philosophical beliefs around health and health care, such as the belief in a life force, that provide the basis for describing these practices as holistic (Coulter and Willis 2004). However, the extent to which these principles inform contemporary CM practice or to which CM users actually identify with them, is likely to vary considerably between individual users and practitioners (Sharma 1996). The increasing use of CM by general practitioners and the movement of CM practitioners towards professionalisation suggests that some CM practices may have become less holistic and more biomedical in their mode of operating (Saks 1998, Coulter and Willis 2004). Empirical data point to an increase in the prevalence of CM use in developed countries. These data, however, also suggest that people are using CM as well as biomedicine and that they do so for largely pragmatic reasons rather than as a result of philosophical beliefs (Saks 1998, de Visser et al. 2000, de Visser and Grierson 2002, Sharma 1996). Overall, there is a lack of evidence that users consider CM to be a paradigm distinct from biomedicine (Williams 2003, Cant and Calnan 1991).
For the purpose of discussing the use of different healing modalities in this paper, I have used the term CM to refer to health practices that participants did not consider to be a part of their biomedical management of HIV. I acknowledge, however, that CM is not a fixed category, that biomedical and CM approaches may overlap and that participants may have differing ideas of what constitutes CM.
Living with chronic illness: some theoretical considerations
Sociologists have conceptualised chronic illness as a disruptive experience in terms of the effect on a person's identity and ability to fulfil roles in everyday life (Williams 2000, Carricaburu and Pierret 1995, Bury 1982). A significant component of this experience is an altered relationship with the body, as the body, largely taken for granted when we are well, becomes visible when it is not functioning properly (Williams 2003:96, Shilling 2002). Bury theorised that the response to such a significant alteration in life situation would involve a ‘fundamental rethinking of the person's biography and self-concept’ and a ‘mobilisation of resources’ (1982). This process involves the individual accessing both cognitive and material resources in order to cope with the disruption (Carricaburu and Pierret 1995, Bury 1982). In this situation, some people use existing resources, while others may seek out new ones (Carricaburu and Pierret 1995, Bury 1982). The body will form a part of the focus of this mobilisation of resources, with individuals potentially accessing information about biomedical, CM or other self-care approaches to managing the illness (Carricaburu and Pierret 1995). A major theme of existing sociological discourses around living with chronic illness is therefore about responding to and coping with change and uncertainty.
Yet, Kelly and Field (1998) have questioned how much of a disruption chronic illness poses, given that coping with uncertainty can be seen to be the norm in the current social structure of Western societies. According to writers such as Giddens (1991), life in the contemporary late-modern era is characterised by uncertainty and choice. In these new conditions, who we are, what we believe and in whom we trust are just some aspects of our lives which we must choose (Giddens 1991). This reflexivity of late-modernity is theorised to extend to the body and self, such that these are no longer taken for granted but become an ongoing project, in health as well as during illness (Giddens 1991, Williams 2003, Shilling 2002).
Both Giddens (1991) and Beck (1992) emphasise the loss of status of scientific knowledge as a feature of the move towards late-modernity or ‘reflexive modernisation’. They argue that as individuals have become aware of the uncertainties of scientific knowledge, this has led to widespread scepticism about the value of such knowledge (Beck 1992). As an extension, the value of biomedical knowledge and the expertise of biomedical doctors may be questioned, and other approaches to health and illness, such as CM, may acquire a more legitimate role. Lay people may also be empowered to choose between health practitioners or to change practitioners if they are dissatisfied with the service offered (Lupton 1997). Changes to how information is accessed and who has access to this information may also play a role in facilitating this process, as the internet enables lay people to access previously unavailable medical information, as well as second opinions and information about CM approaches (Shilling 2002, Kelly and Field 1998, Giddens 1991). Economic and time factors may also influence decisions to consult certain practitioners. In Australia, visits to general practitioners are subsidised, while CM is largely a user-pays system. People may also visit CM practitioners in order to have a longer consultation time (Scotton 2000, Lupton 1997).
Kelly and Field (1998) have suggested that the changes described above may have significant effects on the experience of living with chronic illness. If uncertainty is the norm, the chronic illness experience may be less disruptive now than in the past. Challenges to biomedical expertise and changes to the way that information is accessed may lead to increased choice around living with and managing chronic illness (Kelly and Field 1998, Giddens 1991, Williams 2003). These authors suggest that in contemporary Western society, ‘there are a variety of ways of potentially “doing” chronic illness and of being ill, which reach well beyond the conventional boundaries of medicine’ (Kelly and Field 1998:16).
Such theories have several implications for the ways in which people live with and manage HIV infection. First, people may be more likely to use a variety of approaches to health management. Despite the effectiveness of biomedical treatments in reducing mortality from AIDS, biomedical management may not be the only approach taken, or the primary one. Given the reflexive possibilities of the body in sickness and in health, individuals may have been in the habit of using a variety of different health-care modalities prior to receiving an HIV positive diagnosis. Therefore, rather than a disruption, we may see a continuation of established patterns of health-seeking behaviour and attitudes towards health professionals. Thirdly, people may not consider HIV doctors to be the sole experts in terms of HIV management. Conversely, they may rely on a number of different experts, or seek information themselves, independently of experts. The concept of ‘doing’ chronic illness may therefore provide a useful tool for analysing and understanding the choices made by PLWHA regarding their health care.
Patterns of CM use among PLWHA
While much of the research into the use of CM by PLWHA has focused on prevalence, efficacy and the types of therapies used, several US and Canadian studies have explored the meanings of CM practices among PLWHA (Pawluch et al. 2000, Foote-Ardah 2003, Gillett et al. 2002, Thorne et al. 2002). Foote-Ardah (2003) reported that participants used CM for pragmatic reasons, such as management of medication side effects, but also as a way of having control over their daily treatment practices and as a strategy to cope with uncertainty. Pawluch et al. (2000) described similar motivations for people engaging with CM. She also notes, however, that the practices used and the meanings attached to them were not fixed, and were linked to social characteristics such as gender and sexuality.
The majority of participants in each of these studies were using CM alongside biomedical treatments, although some were resisting using biomedical treatments (Pawluch et al. 2000, Foote-Ardah 2003). The fact that these health-care practices may be informed by quite different philosophical principles was not identified as a barrier to people using them at the same time (Thorne et al. 2002, Pawluch et al. 2000). One study reported that while some participants’ use of CM was informed by holistic principles, for others it was informed by a biomedical understanding of health and illness (Pawluch et al. 2000). Together, these studies suggest that PLWHA actively engage with a variety of approaches to managing health, that the meanings of CM practices are associated with individual social characteristics and that they are fluid.
While these studies have explored the meanings of, and motivations for, CM use, none has done so in the context of theories about living with chronic illness in contemporary society. To date, no study has collected data more than five years after the introduction of ART or explored the impact of long-term use of these therapies on attitudes towards CM and how these may have changed over time. This is important, as the experience of living with HIV has changed dramatically since the introduction of ART, such that the discourse of those who have been using ART for several years will be very different to those who have only recently started using these treatments. So far, no study on the use of CM by PLWHA has been conducted in an Australian setting. Although research conducted in the US has reported very similar findings to those conducted in Canada, it is still important to explore these issues locally, as cultural differences and differences in domestic health-care services have an impact on experiences of illness management.
The main aim of this article is to understand the extent to which people who are living with HIV in Australia have choices around how their illness is managed. In order to explore this aim, the article will focus on patterns of CM use, reasons for using CM and interactions with CM practitioners and doctors.
This project involved 18 individual in-depth interviews with PLWHA in Australia. The research evolved out of my current work in HIV and previous training as a naturopath. Participants were recruited from a database of respondents to HIV Futures 4, a self-completed quantitative survey about living with HIV (Thorpe et al. 2008, Grierson et al. 2007). Respondents to this survey were 1059 PLWHA from all states and territories. As there is no register of HIV positive Australians, survey respondents were recruited through many different HIV organisations, including community organisations and clinical sites (Grierson et al. 2007). Almost three-quarters of respondents (73%) reported using some form of complementary medicine or therapy. A random sample of 30 people who lived in the state of Victoria were contacted by the researcher by mail and telephone and 18 agreed to participate. The project was approved by the Human Research Ethics Committees at the University of Melbourne and La Trobe University. All participants were sent project information sheets prior to the interview and signed informed consent forms at the time of interview.
The interviews took place between February and June 2005. They lasted from between one and two hours. Interviews were recorded using mini-disc and were transcribed verbatim. Respondents were not paid for the interviews. Of the 18 interviewees, six were women and 12 were men, ranging in age from 33 to 65 years. This is an over-representation of women, as women represent approximately nine per cent of the HIV positive population in Australia (National Centre in HIV Epidemiology and Clinical Research 2003). Women were deliberately over-sampled in order be able to understand whether there were any gender differences in the themes explored. Almost all the participants had completed either a University degree or trade certificate after finishing school and four were undertaking some form of higher education at the time of interview. All the men except one identified as gay and all the women were heterosexual. The length of time that participants thought they had been HIV positive ranged from four to 25 years, although some were uncertain of when they had sero-converted, and estimated this time from the year of their initial HIV diagnosis. Half the participants were not currently working, and received a government pension or subsidy. Of the remainder, the majority worked part time or were studying and also receiving a government subsidy. All respondents except one were either currently using ART or had done so in the past.
As these participants were recruited on the basis of their prior participation in a self-completed survey about living with HIV, they all had English as a first language and were familiar with answering questions about their illness, including their use of ART and CM. A limitation of this recruitment methodology is that it excluded PLWHA with poor literacy skills and those from culturally and linguistically diverse populations. Other characteristics of these participants may also limit the generalisability of the research findings. Their relatively high education level fits with the finding that most users of CM are middle-class and are more likely to have a university education (MacLennan et al. 2002). Having a higher level of education may influence the ability to seek information and negotiate choice, particularly with regard to health services (Sointu 2006). As the majority of the male participants were gay they were more likely than heterosexual men to have contact with community HIV organisations and other PLWHA, and therefore to have access to information about HIV treatments and CM through these sources.
The data were analysed thematically, informed by a Straussian grounded theory methodology (Bryman 2004, Strauss and Corbin 1998, Rice and Ezzy 1999). A list of themes that were likely to be central to understanding people's use of CM was developed. As data collection and analysis progressed, I refined and extended these categories to include new themes that had emerged from the transcripts. The final interview schedule included participant demographics, questions about history and patterns of CM use, history of using ART, decision making around CM and ART, sources of information about CM and ART, beliefs regarding health and healing, and interactions with HIV doctors and other health-care professionals. I developed initial codes from reading a random sample of extracts from the transcripts and noting categories that emerged as being important to the research question, such as interactions with CM practitioners (Rice and Ezzy 1999). The project supervisor also read through the same subset of transcript extracts and independently coded these extracts. The two sets of codes were then compared for consistency and a final list of codes agreed upon. The final categories used for analysing the data were developed by abstracting this list into themes in conjunction with existing theories of managing chronic illness (Charmaz 2005). Because of my training as a naturopath I had background knowledge and insight into the participants’ experiences with using CM. However, I maintained a reflexive position throughout the research process, providing due awareness of how my position as a researcher with knowledge of CM might have shaped the interviews and analysis.
Patterns of CM usage
Using CM prior to HIV
All these participants had used some form of CM prior to being diagnosed with HIV; for the majority, however, this was occasional and associated with acute illness, such as taking vitamin C for a cold. A common response of these occasional CM users was that they had not thought about their health prior to HIV, as they had either not been unwell, or had not experienced serious illness. As one man who had been living with HIV for 10 years commented:
My idea of health previous to that (HIV) was if there was something wrong I just went to the doctor and got it fixed up and that was it . . . now it's looking at the whole thing in more depth. With HIV I believe that health has taken on a very deep and meaningful part of your life (Greg, aged 65).
This comment illustrates how Greg's perception of health and illness had altered since living with HIV. While he had previously perceived illness to be a self-contained entity that could be ‘fixed’ with biomedicine, now health was more complex and had an impact on his whole life. For this man, it is likely that this shift was associated with the daily reminders of chronic illness, which for him included taking medicines several times a day, as well as vitamin and herbal supplements, and accommodating side effects such as diarrhoea. As Kelly and Field (1996) suggest, dealing with the physical aspects is central to the task of coping with illness. In this case, the ongoing physical impact of HIV seemed to have problematised this man's health. His experience was broadly representative of the majority of these participants, in that others also recalled that their perceptions of health and the body had altered since diagnosis with HIV. Their experiences seem to challenge the idea that the body has become a ‘project’ in health as well as in sickness, or that people in contemporary Western societies are broadly questioning the value of biomedicine (Giddens 1991:102, Shilling 2002). For these participants, the body and the biomedical approach had been largely taken for granted until faced with the physical effects of chronic illness.
For most participants, therefore, using CM on a daily basis to improve health or control symptoms represented not only a change in behaviour, but also a change in attitude towards CM. One man, when asked if he had used CM prior to becoming HIV positive said:
No, not really. I mean I never had an understanding or a belief in a lot of this stuff, I've always been a little bit sceptical about it. But then when your whole scenario changes, you start reassessing (Simon, aged 46).
At the time of the interview, Simon's health was very poor. He was not responding well to ART, had developed resistance to several treatments, and had experienced serious side effects. He attributes his changed attitude towards CM to the significant loss of health that he had experienced since becoming HIV positive. He had started experimenting with CM in order to try to have an acceptable quality of life. His experiences reflected those of the majority of these participants, in that living with HIV had in effect created a role for CM in their lives. Considering non-biomedical modalities was not an established behaviour for these participants, and had only become necessary when biomedicine was not working effectively, or was causing side effects which had an impact on daily life. This finding again highlights the importance of bodily symptoms in motivating health-seeking behaviour. This change of behaviour can also be viewed as a ‘mobilisation of resources’, in that CM was adopted as a response to the disruptive effects of living with serious illness; it is an attempt to minimise the disruption and to live as normal a life as possible (Bury 1982).
A smaller number of participants had used CM more extensively prior to HIV. For one woman, using CM was related to having another chronic health condition, while three people had engaged with a variety of CM approaches both for health maintenance and acute illness. For this latter group, CM use seemed to be congruent with their broader approach to life. For example, one woman said:
My lifestyle and the people that I associated with, it was an alternative life and also being an artist you don't necessarily have a lot of money so you find ways of maintaining your health with food (Anna, aged 33).
This small group of participants did see maintaining the body and health as an ongoing project, one that was very much an integral part of their lives and their identities. They however represented a small minority of the overall sample.
Using CM post HIV
Patterns of CM use among these participants after receiving an HIV-positive diagnosis were not necessarily related to their experiences before HIV. Only two of the three experienced CM users initially resisted taking ART, while one woman who never tried CM initially chose to use herbal medicines as the primary therapy. For the two participants who were experienced CM users, this decision was connected to their longstanding approach to health. As Anna said:
That's sort of how I lived my life previous to being diagnosed so I wanted to continue with that and I've seen people overcome many illnesses through natural therapies so . . . I thought why not HIV as well (Anna, aged 33).
Anna's decision represented a continuation of her approach to health prior to HIV. Despite hoping to avoid taking medicines altogether, however, these three participants all told similar stories of reluctantly starting ART when they became very unwell. There was an overwhelming sense that they did not have any choice about taking the medicines if they wanted to live. As Wendy remarked ‘life wins out, you’ll do anything to stay alive’. Although these individuals were able to experiment with different ways of managing their illness, their choices became limited when the illness reached a certain critical stage. As Kelly and Field (1998:19) point out, any analysis of the choices available for living with chronic illness must consider the ‘bodily limitations’ of illness. In the present study, these physical aspects of illness were certainly identified as constraining choice.
The remaining participants, with the exception of one recently diagnosed woman, had started using ART either when they were first diagnosed or when it was first recommended to them. The extent to which they used CM, and the way in which these therapies were employed, differed between individuals and particularly with how unwell they were. One man who had previously been sceptical of CM was taking over 100 tablets per day, including ART, medicines for co-morbid conditions and a large number of CM supplements. This man was highly knowledgeable about CM, having spent a lot of time researching the available options to try to improve his health. As he said: ‘I tend to try and find out as much information as I can, whether it's searching on the Internet, asking other people’. However, he perceived this information-seeking and CM use to be a necessity rather than a choice, because he had not responded well to ART and had few therapeutic options remaining, as he commented:
What choice have you got? You sit down realistically and you look at it ‘If I don't do that, I know that I'm going to get riddled with every opportunistic infection that comes along and that I'm going to die’ (Simon, aged 46).
Simon's experience contrasts with that of another man – Martin – who had also invested a lot of time into researching CM, and was taking a large number of supplements. Martin had responded well to ART and experienced no side effects, referring to the tablets as ‘like lollies (sweets) really’. He was therefore able to experiment much more freely with CM, often changing what he took or the dose, as well as taking part in trials of both CM and medical treatments without feeling as though this could have a negative impact on his health:
I do that (experiment) just to learn, you never know what's going to open up by doing something like that, what you’ll learn, what you’ll pick up (Martin, aged 44).
Despite both of these men having access to the same range of CM therapies, only one felt that he could freely choose which therapies he took. The contrasting experiences of these men highlight again the importance of the physiological aspects of illness in determining the breadth of choice available to individuals and their ability to negotiate choice. This analysis suggests that for PLWHA, these aspects include treatment side effects, the physiological response to the virus and to treatments, and the therapeutic options remaining for the future.
While there were aspects of disruption and continuation in experiences and perceptions of health before and after diagnosis with HIV, the predominant experience was one of change associated with adapting to a new situation. Prior to living with chronic illness, participants had taken health and the effectiveness of biomedicine for granted. Using CM was largely related to the desire to improve bodily symptoms, and was not a part of the usual approach to health. For the small number of participants who were experienced users of CM, there was some continuation in their beliefs and approaches to health before and after HIV diagnosis. Even for this small number, there were elements of disruption and adaptation such as having to use biomedical treatments when they became seriously ill.
Yet, these participants were aware of a variety of different options available to them for managing side effects and symptoms. CM therapies were very visible as an option, possibly reflecting the broader health market and loss of biomedical hegemony. Some individuals were also prepared to reassess their previously held beliefs in the context of new experiences, such as adopting CM as supportive therapy even if they had previously been sceptical about the benefits of these therapies. The seriousness of the illness, however, was found to limit the choices of most individuals, or how they experienced choice. Almost all participants felt that they did not have any choice about whether they used biomedical treatments, even if they preferred not to. Additionally, the extent to which they perceived that they had freedom to choose which CM approaches they engaged with seemed to depend on individual factors such as how they had responded to ART and the stage of the illness. Although they could choose to use CM, for some, CM was also seen as a necessity if they wanted to have a decent quality of life and therefore was not seen as broadening the options for managing chronic illness.
Using CM Practitioners
In order to explore the use of CM in more depth, participants were asked about their reasons for using CM and their experiences with consulting CM practitioners. A commonly cited reason for using CM was the desire to have an active role in health management. This was related to the lack of control that people felt they had over whether they took ART and over ART dosing regimens (Siegel and Lekas 2002). In contrast, individuals perceived that they had some choice over the types of CM therapies they used, as well as how often they took them or whether they missed a dose or stopped taking them. As one woman said:
I also think things become very medicalised if you go down that route with HIV, and it's very nice to take back a bit of control, actually do something for yourself rather than relying on doctors to hand out pills (Wendy, aged 39).
Wendy uses the term ‘medicalised’ to refer to the fact that medical management of HIV had imposed a structure on her life. This is medicalisation in the sense that the treatment and monitoring of disease are in the hands of medical experts using medical technology (Williams 2003:13). This finding suggests that it is important for people living with chronic illness to feel that they can be involved in making decisions about how that illness is managed. Other studies have also reported this finding (Pawluch et al. 2000, Foote-Ardah 2003). The fact that people could consider using therapies from outside the biomedical framework was important for those who felt powerless over the types of medicines that they took. Some participants also felt that the holistic approach of CM provided them with an opportunity to approach health from a broader perspective than the biomedical model allowed. As one man commented:
I think it's (CM) looking not just at fighting HIV but at how to take care of your whole body . . . not just your physical side but . . . my mental wellbeing as well as my spiritual wellbeing (Brett, aged 39).
Use of CM was therefore seen to have the potential to de-medicalise HIV management by focusing on aspects of health other than those directly affected by the virus. While this finding does not suggest that people were rejecting biomedicine, there was a sense that they felt constrained by the biomedical approach and were seeking to broaden the focus of their health care (Gold and Ridge 2001).
When it came to seeking guidance for CM, only a few people saw CM practitioners regularly. The remainder relied on peers, the internet, publications and self-experimentation as sources of guidance, without perceiving that there was any authoritative guide. While there was a financial aspect to this decision, as many could not afford to pay for consultations, there was also a strong perception that practitioners actually complicated health management. For example, several participants spoke about feeling overwhelmed after visits to naturopaths because of the number of remedies they had recommended:
I did see the naturopath . . . and he did a lot of different things with me for a while. But it gets to the point where you get . . . ‘well, we should try this and we should try that’ and ‘I'd like you to do a bit of selenium and a bit of zinc, and . . . you've got a problem with your bones, we need to get some calcium going here’ . . . and it's sort of whoa, where do you stop? (Simon, aged 46).
For Simon, the broad focus of the naturopath actually deterred him from continuing to seek advice from CM practitioners. This point was raised by other participants, despite the fact that they also articulated a desire for a holistic approach to health management. Generally, although some participants continued to see practitioners, as the following man described, they balanced the advice of practitioners against information obtained from other sources: ‘I’ll listen to what they have to say and then I’ll go and research it myself’.
As has been suggested in the literature, in broadening the scope for intervention, the CM paradigm can have de-medicalising and, at the same time, re-medicalising influences (Lowenberg and Davis 1994). The decisions made by these participants seem to have resulted from considering these competing influences. They wanted to de-medicalise their lives by increasing personal control over their health management and by approaching health from outside the biomedical framework. Yet, in doing this, they found that they had to limit their use of CM in order to avoid effecting a re-medicalising process. Decisions about health management were therefore not only based upon need and the availability of choice, but on the potential impact of these choices on everyday life.
The limited use of CM by these participants could also be viewed within the context of a desire to return to a ‘normal’ life. The majority had been living with HIV for almost 10 years, and had re-gained a fairly stable level of health, allowing them to either re-assume old roles in their lives, or to take on new ones, such as employment, study or parenthood. Parenthood was particularly important for the three women who had dependent children. This process was aided by improved biomedical treatments and less complicated dosing regimens. There was an overall sense that, now that medical regimens were simpler, people no longer wanted health and HIV to be such a focus in their lives. As Kelly and Field (1998) suggest, improved medical technology can allow people to ‘maintain other identities in work and domestic life’. While these participants wanted to maintain an active role in managing their health, they were also concerned with balancing this with other important aspects of their lives. The following respondent described limiting his use of CM in order to have time to pursue other activities:
If you went into it (CM) in a serious way it would be so all-consuming . . . I have too many other things to do. I mean I want to travel, I want to garden, I want to eat, I want to cook (Orlando, aged 57).
This analysis suggests that participants experienced the choices associated with the CM paradigm as potentially freeing and limiting. While choice provided a contrast to the constraints of the biomedical approach, most participants were cautious about the impact on their lives of fully embracing the CM paradigm, for example, by taking advice from practitioners. The extent of CM use was therefore determined not only by pragmatic factors, such as need, but also by the resources available to them. Financial resources, time, energy level and other roles such as employment, study and parenting were all considerations which helped to determine the extent of CM use.
Interactions with HIV doctors
Uncertainty around biomedical knowledge
One of the key shifts in contemporary society that has implications for this research is the challenge to biomedical hegemony (Kelly and Field 1998). As has already been discussed, the majority of these participants were not critical of biomedicine prior to being diagnosed with HIV. However, the degree to which individuals recalled questioning, challenging or changing doctors post-HIV varied greatly. One woman said that the best advice she had been given when she was first diagnosed was to ‘doctor shop’. This woman was not uniformly critical of biomedicine, but believed that doctors were ‘educated guessers’ and was therefore prepared to challenge their decisions.
Others also felt that the medical understanding of HIV was uncertain and was therefore open to question. This perception was related to the significant changes in the medical approach to monitoring and treating HIV that they had experienced since diagnosis. Information obtained from the internet and from speaking to other PLWHA also contributed to this perception (Shilling 2002). Some participants related their scepticism of biomedicine to previous experiences of chronic illness, while one gay man associated his attitude to gay counter-culture. The following comment was typical of overall attitudes towards medical knowledge:
I don't believe any more in bibles of, the doctor knows best for instance, and I think all these people know more than I do but I trust my own body more (Orlando, aged 57).
Orlando suggests that biomedical knowledge is just one form of expertise, and that lay expertise, gained through first-hand experience of living with HIV is also valid. The themes of the loss of status of doctors and of biomedical information were raised in another study of Australians’ interactions with general practitioners (Lupton 1997). These themes were also raised in other studies of CM use among PLWHA (Pawluch et al. 2000).
Seeking specialists’ knowledge
While acknowledging that biomedical understandings of HIV were uncertain, other participants were more likely to accept their doctor's advice, particularly if they had just been diagnosed, were very ill, or felt that they did not know much about HIV. Even some participants who had established a dynamic of critically engaging with the biomedical approach to HIV expressed a desire for the doctor to be the expert at certain times. Some, such as the following respondent, found this to be difficult, given the established relationship he had with his doctor:
My doctor – because of my level of information . . . is not terribly forceful. And sometimes well, I definitely would like him to be a bit more, ‘Hey, Chris, this is what I think you really should do.’ But he tends not to say things quite like that (Chris, aged 39).
Chris's statement highlights the complexity of interactions between highly informed lay people and experts. Although some people may want to have some ownership over their health, they may also need to be directed by someone with specialist knowledge. Lupton (1997) found that lay people may feel conflict between a desire to interact with doctors in a consumerist manner and an equal desire to be a ‘passive patient’ and to invest trust in medical professionals. She suggests that the affective aspects of the medical encounter are extremely important to patients, especially when they are suffering from illness, and this makes it difficult for people to approach health care from a purely consumerist perspective. This finding points to a potential problem with the concept of ‘doing’ chronic illness. This concept seems to suggest that people who are very ill can choose how their health is managed, independent of the medical profession (Kelly and Field 1998). These results, however, suggest that participants in this study were vulnerable because they were living with a life-threatening illness and it was important for them to be supported by the expertise of a doctor when crucial decisions concerning their health needed to be made.
Some authors have proposed that living with chronic illness in contemporary Western societies need not be a disruptive or constraining experience (Kelly and Field 1998, Williams 2003). While pointing out that chronic illness can still be limiting for some people, Kelly and Field (1998) suggest that there is now greater potential than before for individuals to choose how they live with and manage long-term illness. Yet, this idea of ‘doing’ chronic illness relies on certain changes that are thought to have occurred as a result of the shift to late- or post-modernity. These include the idea that coping with uncertainty is the norm and that the body is the focus of on-going self-improvement strategies in health as well as in illness. Another assumption is that the challenge to biomedical hegemony has led to increased legitimacy of other sources of health information, such as CM practitioners and the internet.
This analysis suggests that for the majority of people, the body is not visible until they are affected by illness. Adjusting to chronic illness therefore continues to be a profoundly disruptive experience. Similarly, most people are not in the habit of questioning biomedicine or using CM as an alternative to biomedicine. It was however clear that participants in this study were aware that a range of options for illness management existed. It was also clear that they were prepared to challenge doctors and to consider alternative forms of expertise. However, while biomedical expertise was open to question, there was also no suggestion that this expertise had been replaced by other forms of expertise such as that provided by CM practitioners. In contrast, the expertise of the doctor was found to be indispensable at certain times, particularly when people were very unwell.
This analysis suggests that two aspects to living with chronic illness are central to understanding how people experience and negotiate choice. The first is the physical aspect. Managing physical symptoms was a major motivator for adopting new approaches to health and illness, including using CM and questioning the biomedical approach. However, the physical effects of illness also constrained choice, by determining when and if people used biomedicine and, in some cases, CM. The other is the desire for certainty and a return to normality after a number of years of responding to the uncertainties of chronic illness. As such, CM use was limited so that the use of these therapies did not further complicate or ‘re-medicalise’ health management. Further, while biomedical knowledge was believed to be uncertain, participants continued to rely on this knowledge, particularly at certain times in the illness trajectory. The biomedical system, despite acknowledgement of its flaws, was seen as a source of relative certainty amidst the uncertainties of living with HIV.
This analysis suggests that there is some potential for choice around living with and managing HIV in Australia and other developed countries. These findings, however, also indicate that the physical and emotional influences of the illness remain central to the illness experience and may limit the potential for choice. A greater appreciation of these issues, particularly the influence of socio-economic status, is needed in order to understand how changes to contemporary society may broaden the chronic illness experience. It will also be important to explore the applicability of these findings to developing countries, as access to ART increases and HIV shifts to a chronic disease model. The different roles that traditional medicines and practitioners of traditional medicines occupy in these countries would be expected to influence how they are used alongside ART.
I would like to thank Marilys Guillemin for her guidance in writing this article and also Jeffrey Grierson and Samantha Croy for their helpful comments. I would also like to thank the anonymous referees for their insightful comments.