AIDS as a chronic illness: psychosocial implications

Introduction Early in the epidemic, the public perception of AIDS as a highly fatal acute illness with a rapid downward trajectory was crystallized. Nevertheless, as early as 1991 in the nursing and medical sociology literature, a few investigators were already discussing HIV/AIDS as a chronic illness (for example 1,2). Shortly thereafter, a number of psychosocial investigations of small groups of long-term AIDS survivors appeared in the literature, although these cases were still seen as infrequent exceptions (see 3 for a review). It was not until the advent of protease inhibitors in 1996, which ushered in the era of highly active antiretroviral therapy (HAART), that the view of AIDS as a chronic illness became widely accepted. These medications were touted in the mass media as ‘miraculous’ because they reduced the risk of opportunistic infections and extended survival by suppressing viral replication and increasing CD4 cell counts. Their availability was said to have “reinserted the word ‘hope’ into the discussion about AIDS for the first time in a decade of treatment trials” 4 (p. 161), and to have offered infected individuals the opportunity for a “second life” 5. Among those at advanced stages of the disease, recoveries have often been so dramatic that the phenomenon has been dubbed the ‘Lazarus Syndrome’, referring to the seeming rising from the dead made possible by these new medications 6. While in the United States recent treatment advances have had a profound impact on the illness trajectory and thus life expectancy of many infected individuals 7, AIDS-related mortality continues to rise unabated in parts of the world where access to the new therapies is limited. The prohibitively high prices of antiretrovirals coupled with inadequate and inefficient health delivery systems have allowed AIDS to reach catastrophic levels in many developing countries 8. Even in the United States, however, not all infected persons have access to or choose to adopt the new treatments. Some physicians are less likely to offer HAART to patients they assume to be at risk for poor adherence, such as those with a history of drug use, the homeless, and the mentally ill 9–11, although the evidence supporting their actions remains inconclusive 12, 13. Other research indicates that women, African-Americans, and those with low levels of education are less likely to have ever used the new therapies 14–17. These findings have been attributed not only to a lack of access to these medications among these socio-economically disadvantaged groups, but also to their own reluctance to use them due to such factors as fear of medication side-effects and distrust of physicians. Similar issues were identified as barriers to antiretroviral use and medication adherence before HAART became available 18,19. Chronic illness and AIDS Chronic illnesses are typically incurable, and thus the goals of medical care are usually containment, slowing disease progression and symptom management rather than cure. Beyond this, chronic diseases tend to share a variety of characteristics 20–23. Frequently, they have an uncertain course or disease trajectory often characterized by alternating periods of remission and recurrence, or stable periods interrupted by episodic exacerbations of symptoms. Most require adherence to a treatment regimen, although these differ significantly across diseases in complexity and efficacy. Chronic disease also typically requires considerable self-care (including self-monitoring of symptoms) on the patient's part, since most of the day-to-day management of the illness takes place outside formal health institutions or facilities. As illness is a form of deviance and thus an undesirable state, chronic conditions also carry some degree of stigma. However, this varies greatly across diseases and depends on a variety of factors, such as whether the individual is perceived as being responsible for having acquired the illness, whether the illness is contagious and whether there is visible disfigurement. In addition, changes in roles and relationships are common. Illness almost always necessitates some degree of dependency, at least at the more advanced stages of a disease. Roles and responsibilities in relationships and families typically must be re-negotiated in light of the patient's limitations or disabilities. Finally, chronic diseases often bring about identity changes as the patient attempts to integrate the illness into his/her life and self-perception over the long haul. Psychological distress is a prevalent concomitant of living with chronic conditions, because of the uncertainty inherent in many of these illness characteristics. Each of these aspects of chronic disease posses an adaptive task or challenge (e.g., tolerating uncertainty, managing stigma, adhering to treatment) that is stressful for the individual to confront. How well the chronically ill individual will adapt to one's disease will depend in large part on his/her ability to master, or at least successfully manage, these tasks. Today, AIDS meets the criteria for a chronic illness 24. While available treatments can render a viral load undetectable, they cannot fully eradicate it from the body and, left untreated, the viral load will rebound. Consequently, there is still no cure for the disease. Furthermore, while the natural history of the disease has been delineated, the course of HIV disease progression varies considerably among individuals 25. Current multi-drug regimens remain complex, often requiring that many pills be taken on a rigid schedule while following strict dietary guidelines. Yet, similar to many other chronic illnesses, the regimens for HIV infection are not equally effective for all patients 26. It is also well recognized that HIV/AIDS has a profound impact on intimate and social relationships. The fact that the disease can be transmitted through sexual behaviors renders intimate relationships fraught with anxiety and ambivalence. Moreover, infected adults often feel that others are unwilling to enter into long-term relationships with them for fear of having to assume care-giving responsibilities when the disease progresses. Additionally, self-care is a component of living with HIV. Many patients engage in self-initiated strategies (e.g., diet, relaxation exercises, stress avoidance) aimed at managing illness or treatment-related symptoms, boosting their immune system, or alleviating stress. In the present paper, we discuss several of the principal characteristics of chronic illnesses, reviewing in each case the relevant available literature. In each section, we attempt to highlight continuities and discontinuities between the pre-HAART and the HAART eras. In addition, we discuss prevention in the context of AIDS as a chronic illness. We conclude with some suggestions for future research in the field of HIV/AIDS and chronic illness. Emotional distress From the outset of the AIDS epidemic, there has been considerable documentation of the adverse psychological consequences of knowing one is infected. When AIDS was viewed as a highly fatal illness with an inexorable downhill course, much of this work focused on assessing depression (depressive symptomatology or clinical depression) and suicidal ideation or acts. While the findings of studies sometimes differed, the preponderance of evidence from the pre-HAART era suggested that depression was prevalent and that suicidal ideation and risk were elevated 27–30. Infected individuals seemed particularly emotionally vulnerable shortly after diagnosis, when HIV-related symptoms first appeared, in the later stages of the disease, and after suffering multiple AIDS-related losses in their social network. It is a widely held, although largely unexamined, assumption that the experience of living with HIV infection in the HAART era is significantly less distressing compared with the past because of the prospects for extended survival and enhanced quality of life offered by the new treatments. Only recently, however, has this issue begun to be empirically investigated. Rabkin et al. 31 followed a sample of gay and bisexual men with symptomatic illness over a period that included the time before and after the availability of protease inhibitors. On all measures of psychological distress employed, the sample as a whole showed a statistically significant, although clinically modest, decline over time (when CD4 cell count, HIV symptoms, physical limitations, and social support were included as co-variates). However, when they further compared subjects whose status on medical markers had improved and had not improved, no significant differences in decline in hopelessness or improvement in quality of life were observed. In another study 32, changes in depressive symptomatology were investigated among 456 HIV-infected individuals (433 men) receiving antiretroviral treatment who were asked to complete a self-administered questionnaire annually. All study participants had completed at least one survey before and one after using protease inhibitors. The investigators found that, between assessment points, the percentage of individuals with a score indicative of probable clinical depression declined from 52 to 46%. While this change was not statistically significant, there were improvements in the total score of the Center for Epidemiological Studies—Depression scale, as well as on the depressive mood, positive affect and somatic symptom subscales. Similarly, in another study 33, changes in depressive symptomatology among 125 HIV-infected adults (most homosexual/bisexual males) assessed at 6-month intervals over a 2-year period were examined. The investigators found a pattern of declining scores on the Beck Depression Inventory over time, especially after the third assessment (12 months after baseline), when 51% of study participants were receiving HAART. There was, however, substantial drop-out before the 6-month assessment, and the number of cases included at each assessment point varied. It thus seems that the evidence on whether living with HIV infection is less psychologically distressing since the availability of HAART remains inconclusive. If ultimately it is shown to be so, this could have implications for needed mental health services. Catalan et al. 34, for example, suggest that as AIDS becomes a more manageable disease there will be a diminished need for acute mental health services (e.g., psychiatric hospitalization, crisis intervention), and a greater need for interventions assisting individuals in adjusting long-term to chronic-illness-related psychosocial stressors. While this may be true among gay and bisexual men and drug users who can recall infected individuals’ bleaker prospects in the pre-HAART era, the need for acute psychiatric services may grow among more recently impacted populations, such as infected adults living in rural America, adolescents, and heterosexual women without a history of drug use. Members of these populations often do not recognize that they were at risk for infection, making diagnosis a more psychologically disruptive event. Uncertainty Individuals living with HIV/AIDS have always confronted uncertainty. Early in the epidemic, this uncertainty revolved around issues such as when one had become infected, where one was in the disease trajectory, how long one was likely to survive, and whether any effective treatments for slowing or halting progression of one's disease would be developed. With the advent of zidovudine and other drugs of the pre-HAART era, uncertainty centered on issues such as whether to get tested, when to initiate treatment, and whether one would have a positive response to treatment. With the availability of HAART, new uncertainties have emerged 35 while old ones persist. For example, many infected individuals who realize extended survival as a result of new treatment regimens may confront emerging opportunistic infections that, in the past, patients did not live long enough to experience. Also, because these medications are new, there is uncertainty about their long-term safety. There is also a lack of clarity about how functional a restored immune system is likely to be 36,37. The meaning of an improved CD4 cell count, a fundamental disease marker, is also ambiguous. For instance, is an individual who was diagnosed earlier as having AIDS solely on the basis of a CD4 cell count below 200 and who now has a count above that threshold still considered as having AIDS 35? Those with advanced disease who had expected to die, but have now experienced a ‘reprieve’ on protease inhibitors, may feel insecure about their new-found well-being. While no longer imminently facing death, and possibly they recognize that they could experience a at any time, and The of many is by the fact that they have been to significant in their Finally, as in the pre-HAART era, and uncertainty to the of the time to initiate medication use Those who have not HAART recognize that not or can the Furthermore, those who have experienced recognize that they may be over an extended period of time adherence to the 26. another of uncertainty is the risk of developing drug with Roles and relationships health has allowed infected individuals to the assumption of new social roles or the to old ones (e.g., For example, the in that zidovudine treatment could significantly of the from an infected to allowed infected women to more With the advent of HAART, more may now as a significant in viral load further the risk of survival and improved health due to HAART may also earlier about not being to or long enough to a However, the adverse of on their health to be of HIV-infected women the and of in the HAART Many infected individuals from HAART are also to work to their to become more to feel more and to however, uncertainty the impact of the stress of work their their after a long period of and their ability to their their health decline Many also about and in the Moreover, not all those using the new treatments feel to but may feel to do so the public perception of the new therapies as infected persons may that others view them as The of extended survival has also many infected individuals to the they have made their relationships Those a many of the confronted before HAART, the anxiety of one's HIV one's and Moreover, in an era of viral the of and may a considerable in relationships. The of living longer and may those who have in relationships because of about health and to the of these relationships Furthermore, the of of and sexual relationships may be anxiety when infected individuals do not feel for these changes The diagnosis of a chronic illness typically necessitates identity work Infected individuals differ in how they integrate their illness in their one are those who their life around their illness. These individuals may work or for AIDS are in or social on of infected and largely their social to other infected the other are those who have to and their illness while as much as possible with their to the illness from a in their In the era, many living with HIV/AIDS now have the opportunity to as living with a chronic illness rather than from a disease. Furthermore, new treatments have patients to feel and to their for longer periods of time, thus the and of the illness and the of the patient However, patients may feel their medication regimens are a of their patient From the outset of the epidemic, infected individuals have been and by have been to and social among physicians and in the United States to care for HIV-infected individuals has been well since early in the reluctance to care for these patients between 1991 and in HIV-related in the United States some but also some of stigma, support for (e.g., had significantly in almost of the that those with AIDS were responsible for the illness. Furthermore, significant they would be or having their with a with AIDS or having an with AIDS or at a where the had AIDS substantial also in that HIV could be transmitted through with AIDS on the a with them and using public all likely to be with to and HIV-infected has also that AIDS is on the it may be and at infected groups and of infected individuals may be greater in developing countries where there has been public education about the disease study of HIV-infected women in rural their that the to them at the time of delivery because of their infected that the medical were infected patients to the were also by study and so was their fear that their would or them Many infected individuals and the and feel and however, the and the and to public patients to remain for longer periods of time, the new treatments have made it possible for them to their illness longer and to as Their social identity as is thus and the many infected individuals experience with their distressing consequences are Yet, they may the psychological of having to a identity and possibly needed adherence The by of the of protease inhibitors was by the that adherence to these and regimens was often a task has been attributed to the to medication fear of the high that medication use will to of illness, and the of For these many individuals treatment or have been unwilling to use protease inhibitors from their physicians to do so While the of the recently regimens for treatment are being the impact of these of treatment on adherence remains to be While the of intervals may adherence because patients can to these treatment they also may adherence by patients to initiate their own who are to adherence to treatment regimens may engage in and have a of Those adhering to but not the dramatic health that early media with the ‘miraculous’ new medications may experience a of anxiety and fear and have also that, before HAART, all infected individuals a from the illness. However, now that some from treatment while others do of and has been by one of as becomes more that can be by and individual but also the to and (p. Finally, because many will not from HAART, those who do may experience a of similar to that in gay men who and to AIDS earlier in the care an part of the management of most chronic Many individuals living with HIV/AIDS engage in a variety of self-care to their immune system, to disease to stress and to symptoms. may be as as that their in a that for periods of so as to manage, for instance, remains a although we have an study infected individuals’ self-initiated for managing symptoms that they to the illness or to antiretroviral The research has focused on the use of and the of the new treatment use by HIV-infected persons has not diminished in the HAART era and and and or are used by infected adults in an to their immune system, to symptoms or medication and to stress. However, as most research has been on gay men with high levels of these findings may not be to other more disadvantaged populations, such as and In own we have found that infected adults often to when they cannot the side-effects of antiretrovirals or they Furthermore, most as than treatments. to these therapies is also by since the of many of are not by health in the era of HAART There is a that the of the new HAART and the availability of may to an in for a variety of the that AIDS is a chronic illness may significantly the of infection that has the of risk with considerably extended for may be a task for especially they feel well and become in relationships. some that having an viral load the of the to a on the impact of the new therapies on infected and although that the new treatments are about the of and sometimes also behaviors In a study of women and of heterosexual were asked about their and sexual behaviors the of viral and the new treatments. While many study that they were not as about being HIV positive because of the improved and they viewed AIDS as a less illness in the protease inhibitors era, they also that viral load and the new therapies (including have not them from Other however, evidence that the new treatments are in of sexual especially among gay and bisexual In one investigators found that, among active gay and bisexual those having sexual were more likely to the that having a who protease inhibitors or whose viral load is is less Additionally, a study of and heterosexual found that gay and bisexual men were more likely to sexual with or status in the HAART era while the sexual of heterosexual Finally, in a study of men and women who were and in more since the new therapies became available for future research for future research are suggested by the present that in survival and quality of life made possible by HAART can only be by those to these we must the treatment are the characteristics and of infected individuals who choose to remain antiretroviral to to their disease through or some other form or The phenomenon of long-term survivors be a one as treatments to the life expectancy of infected How is the of of later impacted by this illness. How HIV/AIDS or In the United States, HIV/AIDS has been a health in rural however, the of research on the disease has been on where health and social are more available and infected individuals may be more research whether the of living with HIV/AIDS in rural the rapid into rural among adolescents, heterosexual women, and future prevention and studies need to these more recently of risk behaviors and interventions behaviors were from work with gay and often these and interventions are in and long-term adherence to among the more recently populations be investigated. The of the epidemic, extended and new of AIDS as a manageable chronic illness may the of new prevention of the consequences that the new of AIDS as a manageable disease will have on and active of HIV-infected individuals is also As the treatment advances the and the health of will the fear and with the disease and, will social of those infected The issue of also be examined. HIV-infected individuals feel less about their illness, and are they more to their HIV status to in light of recent treatment advances and their consequences for those living with the As the present there are many continuities as well as discontinuities in the experience of living with HIV/AIDS over the past There is to feel by the that has been made since the of the in the diagnosis, treatment and clinical management of this disease. however, are still many of the psychosocial as in the pre-HAART era, in While we AIDS as a chronic illness, we to and we have about to with the illness, since many of the issues remain as the