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AIDS as a chronic illness: psychosocial implications

Siegel, Karolynn; Lekas, Helen-Maria

Epidemiology, social, cultural and political

1Center for the Psychosocial Study of Health & Illness, Mailman School of Public Health, Columbia University, New York, New York, USA.

2Correspondence to Karolynn Siegel, Ph.D., Director, Center for the Psychosocial Study of Health & Illness, Mailman School of Public Health, Columbia University, 100 Haven Avenue, Suite 6A, New York, NY 10032, USA. Fax: +1 212 304 7268; e-mail:

Sponsorship: Funding for this research was provided by a grant from the National Institute for Mental Health (MH 61148) and the National Institute of Aging (AG 165571).

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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].

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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.

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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.

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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 even feeling relatively well, they recognize that they could experience a set-back at any time, and again find themselves seriously ill. The apprehension of many is reinforced by the fact that they have been advised to continue taking prophylatic medications, despite significant increases in their T-cell counts [38].

Finally, as in the pre-HAART era, debate and uncertainty continue to surround the question of the optimal time to initiate medication use [39,40]. Those who have not yet started HAART recognize that not everybody benefits or can tolerate the side-effects. Furthermore, even those who have experienced benefits recognize that they may be unsustainable over an extended period of time despite adherence to the regimen [26]. Still another source of uncertainty is the risk of developing drug resistance even with combination regimens.

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Roles and relationships

Better health has allowed infected individuals to realistically contemplate the assumption of new social roles or the return to old ones (e.g., parent, worker, partner). For example, the finding in 1994 that zidovudine treatment could significantly reduce transmission of the virus from an infected mother to her newborn allowed infected women to more comfortably consider becoming pregnant [41,42]. With the advent of HAART, more may now contemplate parenthood as a significant reduction in viral load further decreases the risk of mother-to-child transmission [43]. Extended survival and improved health due to HAART may also alleviate earlier worries about not being physically able to or surviving long enough to raise a child [4]. However, the potentially adverse effects of parenting stresses on their health continue to be salient concerns of HIV-infected women weighing the risks and benefits of motherhood in the HAART era.

Many infected individuals benefitting from HAART are also cautiously considering returning to work to improve their financial situation, to become more socially integrated, to feel more productive, and to counteract boredom [44] (Lekas H-M, Lee G, unpublished data). They face, however, uncertainty regarding the impact of the stress of resuming work upon their health, their employability after a long period of unemployment, and their ability to re-establish their disability benefits should their health once again decline [6,35,45]. Many also worry about confronting stigmatization and isolation in the workplace. Moreover, not all those using the new treatments feel able to resume working [46] (Lekas H-M, Lee G, unpublished data), but may feel socially pressured to do so [35]. Given the public perception of the new therapies as miracle drugs, infected persons not-working may worry that others view them as malingering.

The expectation of extended survival has also led many infected individuals to reconsider the decisions they have made regarding their interpersonal relationships [35,44,45]. Those considering beginning a relationship today face many of the same dilemmas confronted before HAART, including the anxiety of disclosing one's HIV status, infecting one's partner, and becoming re-infected [44,47]. Moreover, in an era of drug-resistant viral strains, the risks of re-infection and co-infection may play a considerable role in shaping peoples’ attitudes toward establishing romantic relationships. The prospect of living longer and feeling better may lead those who have stayed in unsatisfying relationships because of fears about health deterioration and dependency to reconsider the value of these relationships [45]. Furthermore, the possibility of normalization of emotional and sexual relationships may be anxiety producing, when infected individuals do not feel ready for these changes [5,48].

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The diagnosis of a chronic illness typically necessitates identity work [49]. Infected individuals differ in how they integrate their illness in their lives. At one extreme, are those who organized their life around their illness. These individuals may work or volunteer for AIDS organizations, are involved in political or social advocacy on behalf of infected people, and largely restrict their social networks to other infected individuals. At the other extreme, are those who have attempted to minimize and normalize their illness while maintaining as much continuity as possible with their pre-illness lives. They struggle to prevent the illness from becoming a central focus in their lives.

In the HARRT era, many people living with HIV/AIDS now have the opportunity to see themselves as someone living with a chronic illness rather than someone dying from a terminal disease. Furthermore, new treatments have enabled patients to feel healthier and to maintain their usual routines for longer periods of time, thus facilitating the normalization and compartmentalization of the illness and limiting the salience of the patient identity. However, even though patients may feel healthier, their medication regimens are a constant reminder of their patient identity.

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From the outset of the epidemic, infected individuals have been both feared and condemned by others. They have been subjected to discrimination and social ostracism. Resistance among physicians and nurses in the United States to care for HIV-infected individuals has been well documented since early in the epidemic [50,51]; reluctance to care for these patients persists even today [52].

Recently reported trends between 1991 and 1999 in HIV-related stigma in the United States reveal some improvements, but also some persistent problems [53]. Overt expressions of stigma, including support for coercive policies (e.g., quarantine, mandatory testing), had significantly declined. Still, in 1999, almost one-half (48%) of the respondents felt that those with AIDS were responsible for the illness. Furthermore, significant proportions indicated they would be somewhat or very uncomfortable having their child attend school with a child with AIDS (30%), or having an office co-worker with AIDS (22%), or shopping at a neighborhood grocery store where the owner had AIDS (29%). A substantial proportion (40–50%) also believed in 1999 that HIV could be transmitted through kissing someone with AIDS on the cheek (50%), sharing a drinking glass with them (41%), and using public toilets (50%) — all misconceptions likely to be associated with sustained efforts to avoid and ostracize HIV-infected individuals.

Herek [54] has also noted that AIDS stigma is universal although, depending on the country, it may be manifested differently and targeted at different infected groups [55,56]. Fear and ostracism of infected individuals may be greater in developing countries where there has been little public education about the disease [57]. A study of HIV-infected pregnant women in rural Uganda revealed their concern that the maternity staff (especially traditional birth attendants) might refuse to assist them at the time of delivery because of their infected status. Rumors that the medical staff were intentionally killing infected patients to stem the epidemic were also related by study participants, and so was their fear that their husbands would blame, desert, or beat them [58].

Many infected individuals accept and internalize the larger society's negative attitudes toward them, and feel tainted and devalued. Others, however, reject the stigma and the associated negative stereotypes, and strive to alter public perceptions [59]. By enabling patients to remain relatively healthy for longer periods of time, the new treatments have made it possible for them to conceal their illness longer and to ‘pass’ as uninfected. Their social identity as ‘normal’ is thus preserved and the negative reactions many infected individuals experience with their attendant distressing consequences are avoided. Yet, they may suffer the psychological toll of having to maintain a secret identity and possibly forgo needed support.

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Treatment adherence

The initial optimism generated by reports of the effectiveness of protease inhibitors was soon tempered by the sobering recognition that adherence to these complex and toxic regimens was often a daunting task [60]. Patient nonadherence has been primarily attributed to the inability to tolerate medication side-effects, fear of the drugs’ high toxicity, worry that medication use will lead to unwanted disclosure of illness, and the disruption of daily routines [9,60–63]. For these same reasons, many individuals delay treatment initiation or have been unwilling to use protease inhibitors despite recommendations from their physicians to do so [62,64,65]. While the biomedical benefits of the recently developed regimens for structured treatment interruptions are being explored [66,67], the impact of these suspensions of treatment on adherence remains to be seen. While the possibility of periodic medication-free intervals may enhance adherence because patients can look forward to these permissible treatment breaks, they also may lessen adherence by encouraging patients to initiate their own ‘drug holidays’.

Patients who are unable to sustain adherence to treatment regimens may engage in self-blame and have a sense of personal failure [48]. Those adhering to but not experiencing the dramatic health gains that early media coverage associated with the ‘miraculous’ new medications may experience anger, a sense of betrayal, hopelessness, anxiety and fear [5,48,68]. Selwyn and Arnold [69] have also observed that, before HAART, all infected individuals faced a common fate, eventual death from the illness. However, now that some people benefit from treatment while others do not, “The notion of fate universal, unyielding, and unavoidable has been replaced by one of tragedy as fate becomes more selective, malleable, something that can be influenced by choices and individual action. This possibility holds up great promise, but also opens the way to guilt, regret and blame” [69] (p. 900). Finally, because many will not benefit from HAART, those who do benefit may experience a kind of ‘survivor guilt’ [48,68], similar to that noted in gay men who lost friends and lovers to AIDS earlier in the epidemic [3].

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Self-initiated care activities constitute an important part of the management of most chronic illnesses. Many individuals living with HIV/AIDS engage in a variety of self-care strategies, attempting to strengthen their immune system, to slow disease progression, to alleviate stress and to control symptoms. Strategies may be as simple as pacing themselves; that is, arranging their daily activities in a way that allows for periods of rest so as to manage, for instance, fatigue. Self-care remains a grossly understudied area, although we have an ongoing study investigating infected individuals’ self-initiated activities for managing symptoms that they attribute to either the illness or to antiretroviral medications. The limited existing research has focused primarily on the use of complementary and alternative medicine (CAM).

Despite the effectiveness of the new treatment regimens, CAM use by HIV-infected persons apparently has not diminished in the HAART era [70,71]. Herbal and vitamin supplements, special diets, bodywork (therapeutic touch, acupuncture, acupressure, massage, and yoga), and religious or spiritual activities are used by infected adults in an effort to enhance their immune system, to reduce symptoms or medication side-effects, and to alleviate stress. However, as most CAM research has been based on white, gay men with high levels of education, these findings may not be generalizable to other more socioeconomically disadvantaged populations, such as minorities and women.

In our own research, we have found that infected adults often turn to CAM when they cannot tolerate the side-effects of antiretrovirals or they prove ineffective. Furthermore, most perceive CAM as safer than biomedical treatments. Access to these therapies is also limited by cost, since the cost of many kinds of CAM are not covered by health insurance.

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Prevention in the era of HAART

There is a growing concern that the effectiveness of the new treatments, including HAART and the availability of post-exposure prophylaxis, may lead to an increase in unsafe sex practices for a variety of reasons. First, the notion that AIDS is a manageable, chronic illness may significantly decrease the dread of acquiring infection that has historically motivated the adoption of risk reduction behavior. Second, with considerably extended survival, maintaining safer sex for years may be a daunting task for many, especially if they feel relatively well and become involved in permanent relationships. Third, some mistakenly believe that having an undetectable viral load eliminates the chances of transmitting the virus to a partner during unprotected sex [72].

Research on the impact of the new therapies on infected persons’ attitudes and behaviors, although inconclusive, suggests that the new treatments are altering perceptions about the severity of AIDS, and sometimes also behaviors [73–75]. In a study of HIV-positive women and of HIV-serodiscordant heterosexual couples, respondents were asked about their transmission concerns and sexual behaviors given the existence of viral loads tests, post-exposure prophylaxis, and the new treatments. While many study respondents indicated that they were not as concerned about being HIV positive because of the improved treatments, and they viewed AIDS as a less threatening illness in the protease inhibitors era, they also reported that viral load testing and the new therapies (including post-exposure prevention) have not dissuaded them from practicing safe sex [73,75]. Other studies, however, provide evidence that the new treatments are implicated in higher rates of unprotected sexual encounters, especially among gay and bisexual men. In one study, investigators found that, among sexually active gay and bisexual men, those having unprotected sexual intercourse were more likely to endorse the notion that having a partner who uses protease inhibitors or whose viral load is undetectable is less risky [76]. Additionally, a study of HIV-serodiscordant gay, bisexual, and heterosexual couples found that gay and bisexual men were three times more likely to report unprotected sexual intercourse with HIV-negative or unknown status partners in the HAART era [77], while the sexual behavior of heterosexual couples remained unchanged. Finally, in a study of HIV-positive, mostly heterosexual, inner-city men and women who were primarily African-American and Latino, approximately one-quarter reported engaging in unsafe sex more frequently since the new therapies became available [74].

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Directions for future research

Several directions for future research are suggested by the present review. Given that gains in survival and quality of life made possible by HAART can only be realized by those willing to accept these regimens, we must better understand the treatment decision-making process. What are the characteristics and experiences of infected individuals who choose to remain antiretroviral naive, preferring instead to try to manage their disease through CAM or some other form or self-care?

The phenomenon of long-term survivors should be a growing one as treatments continue to extend the life expectancy of infected individuals. How is the accomplishment of normative adult developmental tasks of later adulthood impacted by this illness. How does HIV/AIDS complicate or impede successful aging.

In the United States, HIV/AIDS has been a growing health problem in rural areas. To date, however, the vast majority of research on the disease has been based on urban samples, where health and social resources are generally more available and attitudes toward infected individuals may be more tolerant. Future research should investigate whether the experiences of people living with HIV/AIDS in rural settings differ.

Given the epidemic's rapid spread into rural areas, among adolescents, heterosexual women, and racial/ethnic minorities, future prevention and intervention studies need to consider these more recently affected populations. Existing models of risk behaviors and interventions promoting safer behaviors were developed from work with gay and bisexual, often white, men. Whether these models and interventions are useful in explaining and promoting long-term adherence to risk-reduction guidelines among the more recently affected populations should be investigated. The changing demographics of the epidemic, extended survival, and new perceptions of AIDS as a manageable chronic illness may necessitate the development of new prevention models.

Investigation of the consequences that the new construction of AIDS as a chronic, manageable disease will have on stigmatization and active discrimination of HIV-infected individuals is also needed. As the treatment advances prolong the lives and improve the health of HIV-positive persons, will the fear and dread associated with the disease diminish and, consequently, will social ostracism of those infected decline? The issue of felt stigma should also be examined. Do HIV-infected individuals feel less shame about their illness, and are they more willing to disclose their HIV status to others, in light of recent treatment advances and their consequences for those living with the disease?

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As the present review suggests, there are many continuities as well as discontinuities in the experience of living with HIV/AIDS over the past two decades. There is good reason to feel gratified by the progress that has been made since the start of the epidemic in the diagnosis, treatment and clinical management of this disease. Patients, however, are still confronting many of the same psychosocial challenges as in the pre-HAART era, albeit in different guise. While we re-classify AIDS as a chronic illness, we should continue to value and build upon what we have learned about people's everyday efforts to cope with the illness, since many of the same issues remain salient as the epidemic continues.

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HIV/AIDS; chronic illness; uncertainty; social roles; stigma; adherence; self-care; prevention

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