Chapter 3: Population-Specific HIV/AIDS Status Report: People living with HIV/AIDS - Living with HIV and AIDS
Chapter 3 - Living with HIV and AIDS
Living with HIV and AIDS has major implications for the health and well-being of those infected. Many characteristics of life with HIV can be understood by examining the determinants of health and their impact on people living with HIV/AIDS (PHA), which are discussed in detail in Chapter 4 of this report. The experience of living with HIV, from testing and diagnosis onward, is the focus of this chapter. While the experience of living with HIV is complex and can differ greatly between individuals, PHA in Canada share common issues.
This chapter reviews literature pertaining to testing and diagnosis, disclosure, prevention of onward transmission, the medical challenges of living with HIV, treatment issues, HIV within the family, healthy lifestyle and sexual health. Lastly, the chapter will discuss research concerning HIV and aging, palliative care, and bereavement.
3.1 HIV Testing and Diagnosis
Although HIV testing is widely available in Canada, an estimated one in five of those living with HIV in Canada are not diagnosed and thus not aware of their HIV-positive status. HIV testing is critical so that those infected can access care, treatment and support services and practice prevention behaviours to reduce transmission. Once diagnosed, most PHA want to avoid transmitting HIV to their partners.
Voluntary HIV testing is offered in all Canadian provinces and territories through primary care physicians, public health units, sexual health clinics and other healthcare settings. (1) Positive test results are reported to public health officials nominally or non-nominally Footnote 9, depending on the jurisdiction. Anonymous testing and point-of-care (rapid) testing are available in some provinces.
Prior to the advent of effective and accessible HIV treatment, many people were reluctant to test for HIV. There was a perception that there was no point in knowing one's status when there was no treatment. With the treatment options now available, being aware of one's HIV status provides a number of benefits. For example, emerging evidence is demonstrating that antiretroviral therapies can reduce viral replication and slow disease progression to the degree that HIV infection has become a chronic manageable condition. Additionally, evidence shows that in some populations, individuals who are adherent to antiretroviral therapy can suppress their viral load to undetectable levels making them less likely to transmit HIV to their sexual partners.
Canada has had success in substantially reducing the vertical transmission of HIV from pregnant mother to child. Targeted testing approaches for pregnant women allow for the provision of therapies that can prevent the transmission of HIV to the baby. (2) Evaluation of prenatal HIV screening in Alberta showed that women who chose not to test may be at increased risk of infection over those who chose to do so. (3;4)
Many PHA are still not accessing testing, despite these advances in treatment and testing technologies, as well as successes in expanding the voluntary testing offered in many Canadian jurisdictions. (4-6) As noted in Chapter 2, an estimated 25%) of the estimated 71,300 (58,600 - 84,000) Canadians living with HIV/AIDS in 2011 were believed to be unaware of their HIV infection. The estimated percentage of people living with HIV who are unaware of their infection varies by exposure category. An estimated 34% of infected persons in the heterosexual exposure category do not know their status, while an estimated 20% of those infected in the men who have sex with men exposure category are unaware of their status. (6)
Late HIV testing and diagnosis is associated with higher rates of morbidity and mortality and contributes to longer periods of time where HIV may be unknowingly transmitted; undiagnosed HIV infections represent a substantial public health challenge to reduce the transmission of HIV. During the early stages of infection, there is a higher risk of HIV transmission, as the newly infected person has a higher viral load during this period. Recently infected PHA are more likely to be undiagnosed and may continue to engage in risk behaviours, while PHA who have knowledge of their infection are more likely to take active measures to prevent transmission to others. Conversely, early detection of HIV can contribute to improved health outcomes for the individual.
3.1.1 Coming to Terms with HIV Diagnosis
Being diagnosed with HIV infection is a life-changing experience. The implications of an HIV diagnosis have changed over time as a result of advances in treatment and reductions in stigma and discrimination towards PHA. Diagnosis with HIV is no longer the "death sentence" it once was.
The nature of counselling and support offered to the testing patient, determines in part the experience of HIV testing and diagnosis. Pre- and post-test counselling models developed to assist people in coping with HIV diagnosis and follow-up care, treatment and support are critically important to the HIV testing process. (7;8) Despite these well-developed models, the experience of learning that one is HIV positive varies from person to person.
So he [a family physician] was really trusting, and he did a lot of post-test counselling. He never pushed me to be tested for HIV, but always encouraged me that, when the time came around, he would be there. When I came in he spent a good deal of time with me. He told me as soon as I came into his office that I was HIV positive. He grabbed me and gave me a hug and had a cry with me at the same time.
- Aboriginal PHA (APHA) Footnote 10 (9)
They put me down in the psych ward and locked me in there. They didn't tell me right away about my results... so the doctor just came down and he said 'there's no easy way to tell you this so I'm going to tell you straight out, you're HIV positive. Do you have any questions?' And that was it.
- APHA (9)
The experience of testing and diagnosis is different among people depending on their circumstances. PHA may undergo a range of emotions and reactions when coming to terms with the impact of HIV status on their health, as well as their personal, physical and social lives. (7;10;11)
There was no hope at all, my life was over, that was it. I'm dead. I was a walking dead man [after diagnosis]... After about a year or so, you know, I started wanting to learn more about it and talk to other people, but right off when you find out [are diagnosed] you don't know anything about it, it's just I'm sick and that's it...I have a terminal illness and I'm going to die from it.
- PHA (10)
I remember distinctly walking out of there, and all I could feel was the top of my body. I don't know how I was moving, but honest to god, I couldn't feel my legs, I felt like everybody was going slow...I couldn't hear things; I couldn't see their mouth moving like they were talking to each other. But just the top of my body was moving, and I couldn't feel my legs.
- PHA (7)
Coming to terms with an HIV diagnosis may take a long time for PHA; most undergo a gradual process of acceptance and a (re-)emergence of hope and planning for the future. (9;10;12-15) In a study of 12 gay men living with HIV, various "continuums for empowermentare described. These include a shift in perception from being controlled by HIV to the PHA taking control, discovering meaning and purpose in life, self-acceptance, acceptance of death, and a shift in perspective from being a victim to being a survivor of HIV. (13)
HIV really ran my life and controlled me at first; it took years, but I began to control my own life after a while.
- Gay man living with HIV/AIDS (13)
PHA diagnosed before the advent of effective treatment have had to adapt to a continually altering future - from the expectation of an early death, to false hopes created by early medications, to the greater certainty of a normal lifespan.
It's hard to go from expecting to die and then all of a sudden realizing, well, maybe that's not going to be the case...it's a hard transition to make... to do that turnaround was like you'd been reborn...and it was really scary.
- PHA (15)
While some PHA may turn to coping practices such as substance use and self-isolation, others utilize their diagnosis as a catalyst for positive change. For many, particularly those who were involved in challenging lifestyles such as drug use, a diagnosis of HIV leads to better self-care and a healthier lifestyle. (9-11;13;16-18)
Life is anteed up and you want to get to what's really important and what's meaningful.
- Gay man living with HIV/AIDS (13)
I'm a lot stronger than I was before I was HIV positive. I've empowered myself. I've informed myself; I've educated myself. I no longer feel alone because I know I'm not alone living with this disease. So I'm actually a better person, believe it or not.
- Woman living with HIV/AIDS (17)
For the first month it was like oh my god my life is over, might as well give up on everything...I finally walked out, you know, this is a brand new day, let's just start my life again and this time I'm going to make something of myself. So yeah, it changed in the sense that it made me stronger to do what I wanted and made me go forward more. It took me a step back for a month and then put me four steps forward.
- Youth living with HIV/AIDS (11)
Chapter 4 of this report provides more detail on coping strategies used by PHA in Section 4.10 on personal health practices.
3.1.2 Partner Notification
Partner notification is an important component of HIV-testing services in all Canadian provinces and territories. Newly diagnosed PHA are advised by their physicians and/or local public health officials to inform their past and current sexual and drug-sharing partners that they may have been exposed to the virus. Partner notification usually involves the assistance of one's physician and/or public health services and is carried out without revealing the identity of the person who was the source of the exposure. It is considered a secondary prevention measure because it facilitates access to HIV testing for those who may be at risk.
3.1.3 HIV Disclosure
Disclosure of HIV status to others, such as family, friends, colleagues, health and other service providers, is a highly personal decision, and PHA make different decisions about whom to tell and whom not to tell. Disclosure may have a number of potential benefits for PHA including increased opportunities for social support, increased opportunities to discuss and implement treatment options and HIV risk reduction, and increased opportunities to plan for the future. In choosing to disclose their status, PHA have to negotiate fears of potential stigma and discrimination, the fear of being rejected, and for some, the fear of violence. Some people choose to keep their status a secret.
And it's hard from my perspective because I didn't tell my family, or I didn't tell anyone close to me. Why go to somebody that knows nothing about what I'm experiencing or what I'm going through? What help could they possibly be to me?
- APHA (7)
My heart is impassioned by this, and by my desire to help people understand, and yet I am at a dilemma at how do I disclose to my family. I want so much to be there and to be open but I have so many fears about it. And that is my biggest obstacle that I face right now.
- Woman living with HIV/AIDS (19)
PHA have a legal obligation to disclose their HIV status before engaging in sexual activities that pose a significant risk of transmitting HIV. However, they are not legally obliged to disclose their HIV status to their employers, family, friends or acquaintances. However, PHA may not understand the circumstances in which they are legally obliged to disclose, and thus, may feel pressure to tell others in circumstances in which they are not obliged to do so. This may result in stigma and discrimination, stress, rejection and abandonment.
In Canada, PHA who choose to disclose their status to an employer or colleagues are protected by law against discrimination and breach of confidentiality; nonetheless, studies show there remain instances in which employers discriminate against PHA despite these legal protections. (15;17;20-23)
HIV disclosure to current and future sexual and drug-equipment sharing partners may motivate them to also seek testing and change behaviour which may ultimately protect them from infection and decrease the transmission of HIV. A number of PHA in Canada have been convicted of criminal offences, such as assault, sexual assault and murder, in situations where an individual was found not to have disclosed their positive status. In such circumstances, this may render their partner's consent to sexual activity invalid, since the partner may not have consented had the disclosure been made.
The issue of HIV disclosure was addressed in a study of 34 men, almost all of whom have unprotected sex with men most or all of the time. Of the 34 men, 24 were HIV positive. These PHA had varied reactions to these convictions, ranging from support for the obligation to disclose to an emphasis on individual shared responsibility to protect oneself from infection. (24;25)
I don't think that it's a privacy issue when you're going around sleeping with people - right? and possibly putting them at risk - right? I think if you're going around sleeping with people and you don't tell them and they end up finding out, they have the right to have you charged.
- Gay man living with HIV/AIDS (24)
If we're going to be having sex then I tell them and it's legal. I have to disclose my status.
- Gay man living with HIV/AIDS(25)
Increasingly there are court cases that uphold decisions that say that if you don't disclose your status you are liable. Do I agree with that? No, because I think everyone really should be in charge of their own health, but that said, if we all were, then probably there wouldn't really be that many positive people.
- Gay man living with HIV/AIDS (24)
These convictions have created challenges for PHA. High profile criminal cases receive significant media coverage, and PHA report increased feelings of stigma and fear - fear of disclosure based on fear of rejection, emotional or physical abuse. For some people at-risk of HIV, this may lead to reluctance to seek testing and treatment. (It should be noted that at the time of this writing, there is not any empirical Canadian evidence to show that fear of criminal prosecution deters people from accessing testing.) Some PHA report feeling increased isolation and discrimination. Qualitative reports given by PHA suggest that HIV disclosure can be used coercively against PHA.
...a friend of mine, she had, ah, her and another lady had had a gentleman charged that was, ah, infected them and that was in the paper. And my partner at the time, I didn't, I didn't tell him who, who this lady was, I didn't want him to know but when he seen that article in the newspaper one day he comes up to me and shows me this paper and then he's telling me, you know, he says, "If you ever leave me," he says, "This is what I'll do to you. I will take you to court. And I will tell, tell them that you infected me."
- Aboriginal woman living with HIV/AIDS (12)
What I'm afraid of is hearing that if you do it with someone, and he has it and you didn't tell him, he could take you to court.
- Young woman living with HIV/AIDS (26)
PHA may experience severe emotional stress and guilt related to fear of infecting their intimate partners. Fear of rejection, abandonment and the potential for violence makes HIV disclosure a difficult task for PHA in intimate relationships. (12;26-28) The need to disclose HIV status was found to deter some HIV-positive women from seeking intimate relationships due to fear of rejection and violence. (27)
Everything changed after that [disclosure]. He told me I don't want a woman like you. He was really mean to me, and I was really scared. I cried because I really love him, and I was scared that he would tell somebody.
- Young woman living with HIV/AIDS (26)
Preventing the spread of HIV is a major national and international public health goal. This section discusses the meanings and implications of prevention for PHA.
3.2.1 Positive Prevention
Preventing the spread of infectious diseases, such as HIV, is a shared responsibility of all members of society. HIV prevention strategies have been criticized in the past for focusing too much on HIV-negative people and failing to utilize the ways in which PHA could contribute to HIV prevention. The concept of positive prevention emerged out of an effort by PHA to engage in activities that could contribute to preventing HIV transmission. "Positive prevention is a way of reducing HIV transmission specifically designed by and for people living with HIV." Footnote 11 (29) Positive prevention includes the recognition of a shared responsibility between HIV-positive and HIV-negative partners.
Positive prevention is not just about stopping the forward transmission of HIV; it involves behaviour change, developing the communication skills and confidence to make decisions to take care of one's own health and reduce possible harm to sexual partners. Positive prevention involves active HIV disclosure by PHA and includes the development of strategies to deal with the consequences of HIV disclosure, including possible rejection. (29) The impact of positive prevention approaches on reduction in HIV transmission has not received significant research attention thus far.
PHA may engage in the practice of serosorting, or specifically seeking sexual partners that are also HIV positive. The practice is done partly for the purposes of reducing the risk of HIV transmission and partly in an effort to have what may be believed to be safer sex. (30) Disclosure may be done explicitly; however, serosorting often relies on assumptions of a partner's HIV status, rather than the explicit disclosure of the partner's status. (31) For instance, the literature indicates that some gay men and other men who have sex with men make assumptions regarding their partner's serostatus based on the willingness to use a condom. (25;32) However, the assumptions are often based on perceptions related to high risk, which can be inaccurate. For example, one sexual partner's reluctance to use a condom could be interpreted as either a sign that he is positive (and hence not concerned about HIV infection, as this has already occurred), or that he is negative (and hence not concerned about passing on HIV to his partner).
Serosorting is based on the premise that sex between HIV-positive partners does not include a risk of onward HIV transmission. While the intended purpose of serosorting may be to reduce risk, the practice can lead to delayed or no condom use, resulting in exposure to sexually transmitted infections and other strains of HIV including drug resistant strains. (25;30;33;34)
3.2.3 Treatment and HIV Transmission
An emerging international body of evidence is examining the benefit of 'treatment as prevention' - that is, that PHA who adhere to antiretroviral medications, and thus have an undetectable viral load, have a significantly reduced likelihood of transmitting HIV. This evidence, while encouraging, creates new challenges for prevention. (35)
An assumption by PHA that certain risk behaviours are less risky while they are on treatment, combined with potentially inaccurate assumptions regarding their viral load and transmissibility, may result in a misconception of risk, and thus contribute to onward transmission. Further research is needed to assess the effectiveness of "treatment as prevention" in real life settings. An issue warranting further investigation is PHA's understanding of the effect of treatment on HIV transmission risk and the conditions required for a 'treatment as prevention' strategy to be effective. Treatment as prevention does not replace risk reduction strategies, but rather is demonstrated to be effective in combination with existing prevention techniques. The impact of risk compensation, whereby people may be less likely to use HIV prevention measures because they feel that the risk of HIV transmission is lower, is another key issue that will need to be followed.
3.3 Medical Conditions Related to HIV/AIDS
PHA can be affected by a range of medical conditions related to their HIV infection, including illnesses related to AIDS, treatment side effects, and HIV-associated non-AIDS conditions. They may also live with illnesses and/or co-infections that are not associated with their HIV disease, but the treatment for these conditions may be complicated by HIV infection. Some PHA experience HIV as an episodic disability, where periods of good health can be interrupted by unpredictable periods of ill health and disability. (36)
Despite the advances made in HIV treatment, there is still a significant impact on life expectancy. A study analyzing the life expectancy of individuals on combination antiretroviral therapy in high income countries, including Canada, found that the average number of years remaining to be lived at age 20 was only about two thirds of that in the general population in those countries. There was considerable variability between sub-groups, with women having higher life expectancy than men, and those with presumed transmission through injection drug use having lower life expectancy than those from other groups. Those who started treatment with a lower baseline CD4 count also had lower life expectancy Footnote 12. (37)
Another major study looking at over 44,000 PHA enrolled in Canadian and US cohort studies found that although CD4 counts at first presentation for HIV care had increased between 1997 and 2007, the median CD4 count at presentation was still below the standard threshold for initiating antiretroviral treatment (CD4 count below 350), suggesting that there is still an urgent need for earlier diagnosis and treatment. (38)
3.3.1 Acquired Immunodeficiency Syndrome (AIDS)
In the absence of treatment with antiretroviral medications, HIV infection will progress to Acquired Immunodeficiency Syndrome (AIDS). PHA are said to have AIDS if they have one or more of the 28 clinical conditions characterized as AIDS-defining illnesses. A list of AIDS defining illnesses is provided below.
Indicator diseases for adult and paediatric cases:
- Bacterial pneumonia (recurrent)
- Candidiasis (bronchi, trachea or lungs)
- Candidiasis (esophageal)
- Cervical cancer (invasive)
- Coccidioidomycosis (disseminated or extrapulmonary)
- Cryptococcosis (extrapulmonary)
- Cryptosporidiosis chronic intestinal (> 1 month duration)
- Cytomegalovirus diseases (other than in liver, spleen or nodes)
- Cytomegalovirus retinitis (with loss of vision)
- Encephalopathy, HIV-related (dementia)
- Herpes simplex: chronic ulcer(s) (> 1 month duration) or bronchitis, pneumonitis or esophagitis
- Histoplasmosis (disseminated or extrapulmonary)
- Isosporiasis, chronic intestinal (> 1 month duration)
- Kaposi's sarcoma
- Lymphoma, Burkitt's (or equivalent term)
- Lymphoma, immunoblastic (or equivalent term)
- Lymphoma (primary in brain)
- Mycobacterium avium complex or M. kansasii (disseminated or extrapulmonary)
- Mycobacterium of other species or unidentified species
- M. tuberculosis (disseminated or extrapulmonary)
- M. tuberculosis (pulmonary)
- Pneumocystis jirovecii (formerly Pneumocystis carinii) pneumonia (PCP)
- Progressive multifocal leukoencephalopathy
- Salmonella septicemia (recurrent)
- Toxoplasmosis of brain
- Wasting syndrome due to HIV
Indicator diseases that apply only to paediatric cases (< 15 years old):
- Bacterial infections (multiple or recurrent, excluding recurrent bacterial pneumonia)
- Lymphoid interstitial pneumonia and/or pulmonary lymphoid hyperplasia
Source: Public Health Agency of Canada.
Advances in treatment have rendered AIDS-defining illnesses far less common in Canada, as proper adherence to antiretroviral medications means that progression towards AIDS will happen less frequently. (29) Nonetheless, deaths from AIDS continue to occur. In a study of all deaths in British Columbia that were reported to be AIDS-related from 1997-2005, 40% of those who died never accessed treatment despite it being provided free of charge. Low socioeconomic status was associated with this delay in seeking treatment and with increased mortality among PHA accessing treatment. (39)
Advances in treatment have rendered causes of death among PHA increasingly similar to that of the general population. A study examining cause of death among PHA in Alberta revealed that deaths from AIDS-related causes have decreased significantly, while increases were observed in non-AIDS-related deaths, including deaths caused by hepatitis B, hepatitis C (HCV), smoking and injection drug overdose. (40)
3.3.2 HIV and Co-morbidities
Co-morbidities refer to the presence of one or more diseases in addition to a primary condition or disease. Co-morbidities can present challenges in treating and managing the various conditions. PHA who are on antiretroviral medications experience higher rates of certain diseases including cardiovascular disease, diabetes, bone loss, and certain cancers. These HIV-associated non-AIDS conditions (HANA) are an evolving area of investigation in current research. HANA can be caused by HIV infection, side effects of antiretroviral medications, or a combination of the two. (36)
3.3.3 Mental Health
Mental health can affect vulnerability to HIV infection and mental health conditions can result from HIV disease, HIV treatment side effects or a combination of both. (29) Mental health and quality of life are important areas of concern for PHA regardless of whether or not they are receiving antiretroviral treatment. PHA experience elevated levels of depression and apathy when compared with the general Canadian population. (41;42) A survey of PHA living in Ontario found that over 50% were experiencing depression. (43) PHA who were born outside of Canada were found to have greater depressive symptoms than PHA born in Canada, when controlling for the impacts of stigma on mental health. (44) Depression among PHA has been associated with poorer health, poorer health-related quality of life, negative coping strategies and higher usage of services and resources. (41;43;45)
Mental health problems such as anxiety, nervousness, dizziness, and insomnia, are also experienced at higher rates by PHA. (36) PHA with neurological symptoms can experience reduced health-related quality of life. (41;46)
3.3.4 HIV Co-infections
A major challenge in health management for PHA is infection with, or vulnerability to infection with other illnesses with a shared transmission route or increased susceptibility due to lower immune response. Common co-infections among PHA in Canada include tuberculosis and sexually transmitted and blood-borne infections (STBBIs) such as hepatitis B, HCV and syphilis. (29;47-49) PHA who are co-infected with STBBIs experience elevated morbidity and mortality when compared to PHA who are not co-infected. (36)
Co-infection can make life more difficult for PHA, as well as complicate treatment and diagnosis. (29) For example, an epidemiological study, which took place between 2001 and2006, examined increases in infectious syphilis in Ottawa, and suggested that a more intensive diagnostic and therapeutic approach is necessary to detect syphilis in PHA as a result of modified clinical presentation of syphilis in HIV-infected individuals. (50)
HIV, other STBBIs and tuberculosis have a synergistic relationship. The presence of HIV can significantly impair the ability of the immune system to stave off infections while the presence of many STBBIs can increase vulnerability to, or the infectiousness of, HIV. HIV infection is a significant contributor in the progression to active tuberculosis among PHA with latent tuberculosis. (51)
The majority of recent research examining common HIV co-infections among PHA focuses on HCVHCV. Infection with HCV among PHA is on the rise in Canada, particularly among people who use injection drugs. (29) HCV infection in PHA is an independent predictor of morbidity. (52) HCV-HIV co-infection is also independently associated with lower levels of treatment adherence and poorer treatment outcomes. (52-54)
PHA who are co-infected with HCV experience significant mental and physical health problems including more symptoms of depression, fatigue and poorer quality of life than PHA who are mono-infected with HIV. (55) A study of 482 PHA in Ontario found those who were co-infected with HCV were more likely to report substance use and a history of homelessness, and to experience significantly more depression than people infected with HIV only. They were also less likely to be receiving antiretroviral treatment. Further, those who were co-infected were more likely to be heterosexual, Aboriginal, less educated and unemployed. (56)
PHA co-infected with HCV also experience significant social barriers in accessing care, treatment and support. (57) Many of these social barriers are discussed in Chapter 4 of this report. In particular, PHA who are co-infected and who use injection drugs face additional complications regarding accessing treatment and services. (58)
Many co-infections (HCV-HIV and TB-HIV) are known to have negative impacts on HIV treatment outcomes. Treatment regimens for one infection may interact with those of another infection. This can make treating PHA who are co-infected difficult and can delay treatment for HIV and other co-infections. (29)
In a recent study of HIV and HCV co-infected patients attending an Ottawa clinic, different reasons for treatment interruption were observed between male and female patients, with females significantly more likely than males to interrupt treatment for neuropsychiatric reasons, such as depression or headaches. Death rates were also found to be disproportionately higher among females co-infected with HIV and HCV. (59) Many of the elevated poor health and treatment outcomes of co-infected PHA are the result of underlying poor determinants of health, which are discussed further in Chapter 4 of this report. (60;61)
3.3.5 Episodic Disability
For many PHA, HIV is an episodic disability, where periods of good health can be interrupted by unpredictable periods of ill health and disability. (29;36;62;63) Disability is defined broadly to include physical and mental challenges, such as pain, fatigue, and/or decreased memory; difficulties with day-to-day activities, such as walking or climbing stairs; and restrictions on social participation, such as difficulty working or participating in social activities. Some PHA have chronic, long-term disabilities, but many HIV-related disabilities come and go, without following a clear pattern of duration or severity. In addition to the difficulty faced in dealing with and adapting to the disability, PHA face additional challenges and stresses due to the uncertainty of not being able to predict and plan for these episodes. (29;36;63)
New HIV treatments are resulting in considerable improvements in symptom management and quality of life for PHA. For PHA who have recently been infected and who have accessed early treatment, periods of disability may be less common. Further and extended follow-up will be required to see whether this trend continues.
Largely as a result of antiretroviral medications, HIV is now considered a chronic yet manageable illness. There has been a significant and progressive increase in life expectancy and decrease in mortality among PHA accessing current regimens of highly active antiretroviral therapy (HAART). (6;64) The increased availability and uptake of antiretroviral medications has been associated with improved virological outcomes and decreased drug-resistance among PHA. (65) These medications have also resulted in dramatic reductions in the incidence of AIDS-defining cancers. (66;67)
Despite these achievements, there are various challenges associated with treatment. In a study with 38 PHA participants, which looked at the effects of antiretroviral therapy on quality of life, PHA viewed treatment as a trade-off between diminished quality of life for extended longevity. They identified issues such as the consequences of side effects, including impacts on self-esteem, social and sexual health, and the impact of drug toxicities. Other negative factors identified included tensions with health care workers, loss of independent decision making, disincentives to returning to work, the burdens of taking medication and the stress of hiding their HIV-positive status. (68)
Treatment in Canada is publically available through provincial and territorial health systems, and most PHA access treatment, care and support. (29) However, not all PHA in Canada access recommended treatment. (39) The decision of when to begin treatment involves weighing a number of important considerations for PHA. (29;69) Once PHA begin treatment, they are advised to remain on treatment for the remainder of their lives. (29) Analysis of data collected from 104 PHA in Ontario did not find any significant differences in uptake of treatment between men and women PHA; on average both men and women began antiretroviral medications 2.2-2.3 years following their initial HIV diagnosis. (70) A number of personal and social barriers may impact the ability and willingness of PHA to follow treatment when it is recommended by a doctor.
A variety of factors influence treatment success. Adherence is a key factor - PHA must take their medications daily and not interrupt treatment. Section 3.4.2 will look at adherence issues in detail. Other factors affecting treatment success include the fact that individual PHA may respond differently to various treatment regimens, and that deferred or delayed uptake of treatment has an impact on the mortality of PHA. (71) Lastly, food insecurity, where access to nutritionally adequate food is limited or unstable, has been associated with treatment interruptions, poorer treatment outcomes and HIV-related mortality. (72;73) In a study tracking 1,119 participants in British Columbia's HIV/AIDS drug treatment program between 1998 and 2007, those who were food insecure and underweight were nearly twice as likely to die as those who were food secure and not underweight. (72)
3.4.1 Treatment Side Effects and Interactions
Various treatment regimens can cause side effects, which can negatively impact health and quality of life among PHA. It is often difficult to distinguish whether health problems and symptoms experienced by PHA are caused by HIV medications or HIV disease itself. In many cases, these health challenges may be a result of both treatment side effects and HIV infection. (29;36)
Side effects of HIV treatment vary between PHA, and between antiretroviral medication regimes. While some PHA experience severe side effects from treatment, others may observe mild to no adverse reactions. Reported side effects include: loss of appetite; nausea and vomiting, digestive problems such as diarrhoea and gas; fat redistribution; cardiovascular problems including strokes, heart attack; insulin resistance and diabetes; bone problems including bone death; liver problems; pancreatitis; skin problems; muscle and joint pain and muscle weakness; headaches; and mental health challenges such as depression and anxiety. (29;36;68;74)
Several studies have found that changes in body shape and image resulting from lipodystrophy - a side effect of certain medications, where body fat is redistributed - compromise quality of life among PHA on antiretroviral medications. (68;75;76) However, newer treatment regimens are less likely to cause this side effect. (36)
I have self-esteem issues about body changes because of my medication and that's impacted me so bad I've actually been suicidal...I still feel [expletive] about my appearance and sometimes I wake up in the morning and I don't want to wake up and I feel that's been new with me since I've gotten more big in the stomach and lost all the fat in my legs and arms.
- PHA (68)
Treatment has substantially improved the lives of PHA despite the negative impact of side effects on some. A comparison of the health-related quality of life outcomes of PHA using different treatment regimens in a three-year long multinational trial found that, overall, beginning treatment was associated with maintained or improved health-related quality of life. (77)
3.4.2 Treatment Adherence
Successful suppression of HIV requires strict adherence to antiretroviral medications. Treatment interruptions can have negative clinical consequences, including the development of drug resistance. (36;78) Research on the success of antiretroviral medications has examined hospital (re)admission as a predictor of mortality. (79;80) Adherence to antiretroviral medications has been shown to reduce the chance of hospital readmission for PHA in a comparison of two cohorts, with equal numbers of PHA on HAART and not on HAART. (80) Another study examining clinical predictors of hospitalization among a large sample of PHA on antiretroviral medications in British Columbia found that low CD4 cell count, as well as inadequate treatment adherence, previous hospitalization, female sex, and injection drug use, predicted hospitalization rates. (81) In a related study on the same cohort, those with suboptimal adherence had a 1.888 times higher risk for hospitalization. (79)
Simplifications in drug regimes help to improve adherence. In a study of 779 PHA in Ontario, 15% reported missing at least one dose of antiretroviral medications in the four days prior to their interview. Participants taking once-daily dosing were half as likely to miss a dose as those with more than one dose a day. Other factors correlated with suboptimal adherence include younger age, lower positive social interaction and increased frequency of binge drinking. (82)
126.96.36.199 Factors Affecting Adherence
Adherence is a health practice that requires a personal commitment from PHA to regularly fill prescriptions and take medications every day for the rest of their lives. The strictness of adherence required of HIV treatments means that beginning treatment may involve substantial changes in lifestyle for some PHA. (29;36;83) Treatment is associated with side effects and can complicate other conditions, as well as delay or interrupt the treatment of other infections. Therefore, PHA must consider the pros and cons of beginning treatment.
When I first went on the drug regime, it felt very oppressive, and it felt difficult for me having to ask for accommodation around when we should eat, if I was with friends, and you know, let's say a dinner party or something.
- PHA (83)
I live around them. Cannot leave home without them kind of thing or have to come home for a certain time because I do not like [to] travel with them if I do not have to, so I will go to a friend's house, and then I will have to leave to take my meds.
- PHA (83)
Depression is in itself a risk factor for mortality - even for PHA on treatment - and can influence PHA's ability to adhere. The effect of adherence on the relationship between depressive symptoms and mortality among 563 PHA first initiating HAART was assessed over a six-year period. (84) Of these patients 51% were classified as having depressive symptoms at baseline. Those with depressive symptoms and less than 95% adherence were 5.9 times more likely to die than those who did not have depressive symptoms and adhered to treatment.
The ability and willingness of PHA to adhere to prescribed treatment regimens is complicated by psychosocial factors. (85-88) Fear of stigma and discrimination may influence adherence practices among PHA. Fifteen PHA described the considerations affecting their decision to decline HAART when it had been recommended by a physician. (85) Factors discouraging participants from initiating treatment included expected outcomes, medication factors and mood states, such as depression, anxiety and anger. Participants also cited the fear that the side effects of medications would expose their HIV infection to others and result in embarrassment, judgement, rejection and abandonment from social relationships.
I am not strong enough to tell others I have AIDS. I am worried about what they'd think of me and how they'd look at me, how others might treat me. So I don't take pills because I don't want others to know.
- PHA (85)
A lot of it is denial about being HIV positive. That's a big part, and the side effects, but the first three reasons would be: denial, denial, denial. When people ask me I can say I'm fine as long as I'm not taking medication.
- PHA (85)
In addition to the initiative and responsibility required of PHA, achieving optimal adherence involves the commitment of PHA care providers to offer a range of adherence support activities. In a survey of physicians, pharmacists and nurses who provide care to HIV patients in Ontario, a range of adherence support activities were endorsed by the majority of respondents, but they also reported that they did not always provide these supports. Barriers reported included lack of time, the need for more healthcare professionals to whom they could refer for adherence support, and the perception that certain activities were not part of their role. (69) PHA's access to social support may also have an impact on clinical outcomes among PHA on antiretroviral medications. A study examining 34 PHA who were taking antiretroviral medications consistently over a four-year period found greater interpersonal, informational and emotional support to be associated with better clinical benefits, measured in terms of viral suppression. (89)
The process of relocation can interrupt treatment access and adherence practices for PHA. In a study of 2,421 PHA in British Columbia, those who moved at least three times in the study were 1.79 times more likely to be non-adherent. (90) International travel can also affect adherence practices - in an anonymous survey of 290 PHA attending an HIV clinic in Toronto, 133 reported international travel; of these, 29% reported either discontinuing their medications or being poorly compliant while traveling. (91)
188.8.131.52 Treatment Adherence among Specific Populations
Certain populations have greater difficulty accessing and adhering to treatment. In a study of 892 PHA receiving treatment in British Columbia, Aboriginal PHA (APHA) displayed lower levels of adherence to treatment than other PHA. (92) Slower treatment uptake has also been observed among APHA with a history of injection drug use. (93) Social marginalization, feelings of invincibility and misconceptions about treatment may play a role in treatment adherence among Aboriginal youth living with HIV. (94) Social and structural barriers have inhibited access to and utilization of HIV treatment and services by female sex workers in Vancouver's Downtown Eastside, a population with a high rate of injection drug use. (95)
PHA who are co-infected with HCV and who use injection drugs are a population known to experience significant barriers in access to treatment, which negatively impacts adherence to treatment. (96) Moreover, treatment for co-infection in this population can be complicated by interactions between treatments and illicit drugs. HCV co-infection was found to be a predictor of poor adherence patterns independent of injection drug use in a sample of 1,186 PHA including 606 co-infected with HCV. (97) There is evidence that methadone treatment may have the potential to improve treatment adherence and outcomes among HIV and HCV co-infected people who use injection drugs. (58;98)
A large body of research on treatment in Canada examines the relationship between injection drug use, adherence and mortality. In Canada, poor levels of adherence are disproportionately high among communities with high numbers of people who use injection drugs. (60;61;98;99) PHA who use injection drugs did not, however, display elevated rates of antiretroviral resistance when compared to PHA without a history of injection drug use. (93) PHA who use injection drugs are more likely to adhere to recommended treatment when prescribed a daily single pill treatment regimen. (100)
Studies that compared the mortality of PHA who use injection drugs, with those who do not, have come to different conclusions. In a study modeling life expectancy of different groups of PHA, PHA who use injection drugs had substantial disparities in life expectancy when compared with PHA who do not use injection drugs. (101) Nonetheless, in a study tracking 3,116 PHA initiating HAART, of whom 915 (29%) were injection drug users, five-year survival rates were virtually identical, once overdose deaths had been accounted for. (102)
In a study of 160 PHA participating in a larger study on injection drug users in Vancouver, 44% discontinued treatment during the study period. The most common reasons given for discontinuing treatment were incarceration (44%) and medication side effects (41%). (103) In a qualitative study of 12 HIV positive injection drug users who had been incarcerated, participants reported experiencing treatment interruptions and receiving sub-optimal treatment advice while in prison. (104)
3.5 Complementary and Alternative Medicines
Complementary and Alternative Medicine Therapies (CAMT) is a broad term that refers to "any therapy outside the standard Western model." (29) The majority of PHA who use CAMT do so to gain the benefits of both CAMT and conventional medicine. Complementary medicines are used in combination with antiretroviral medications, either to alleviate symptoms of HIV and AIDS, to relieve treatment side effects, and/or to generally improve quality of life. At this time, the vast majority of CAMT costs are not covered by public health care plans in Canada, although some PHA may access some forms of CAMT through private health insurance. (36)
Examples of CAMT include affirmations and visualization, acupuncture, aromatherapy, ayurvedic, herbal medicine, homeopathy, massage and touch therapies, meditation, North American Aboriginal healing traditions, naturopathy, traditional Chinese medicine, and yoga. PHA may use CAMT to increase energy levels, strengthen spiritual health, relieve chronic pain, relieve nausea, help recover from drug toxicity, relieve stress and increase coping capacity. (36) For others, use of CAMT is part of a way of life. APHA often describe combining Aboriginal healing practices with Western therapies in their holistic approach to health management. (105)
I think knowing a Western approach and knowing an Aboriginal approach and different kinds of cultural teachings would be the best because we don't live outside of the Western world. We live in it. And some people would only respond to it because they've been hurt by a lot of Aboriginal people along the way. So we need to know about both.
- APHA (105)
Cannabis is a controlled substance in Canada; however, legal access for medicinal use may be granted to people with serious illnesses including HIV and AIDS, through the Marihuana Medical Access Regulations (MMAR). As of 2007, fewer than 1,400 Canadians had obtained MMAR approval. In a study of 197 PHA, nearly one third reported using cannabis to self-medicate. A total of 80% of these participants reported relying on illegal channels to obtain cannabis. Factors including lack of information, and concerns about the quality of the product, were identified as barriers to legal cannabis access. In addition, many participants perceived the MMAR application process to be stressful, and described it as lengthy, onerous, complicated and confusing. (106)
There is mounting evidence that adverse reactions and drug resistance occur as a result of interactions between natural health products and antiretroviral medications. (36;107-110) Natural health products may include supplements, herbal remedies and/or vitamins. (36) A recent review of Canadian adverse reaction case reports, as well as human clinical studies for patients on antiretroviral medications and natural health products, found that the risk for therapeutic alterations and resistance can occur during simultaneous use of natural health products and antiretroviral medications. (110) Another systematic review conducted in 2005 found that important drug-level changes arise when natural health products are combined with antiretroviral medications. This study found significant interactions between antiretroviral medications and garlic, and between antiretroviral medications and St. John's Wort, although methodological limitations prevent these findings from being generalizable to patients. (109) Given the large portion of PHA known to make use of natural health products in Canada, there is a need for further research on interactions between these products and antiretroviral medications.
In sum, there is very little research determining the effectiveness of CAMT. The limited evidence for many CAMT interventions means that most CAMT options are not, therefore, considered evidence-based treatments. (36) Given the estimated 90% of PHA known to use some form of CAMT in Canada, there is a considerable need for further research and evaluation on the effectiveness of the various forms of CAMT used by PHA. (36)
3.6 HIV within the Family
Having one or more family members living with HIV has implications for the entire family, including life partners, children and extended families. Caregiving is critically important to the health and well-being of PHA. The family plays a primary role in providing this care, since most non-medical care takes place in the family environment.
For the purposes of this report, family refers to "any combination of two or more persons who are bound together over time by ties of mutual consent, birth and/or adoption or placement and who, together, assume responsibilities for variant combinations of some of the following: physical maintenance and care of group members; addition of new members through procreation or adoption; socialization of children; social control of members; production, consumption, distribution of goods and services; and affective nurturance." (111)
3.6.1 Reproductive Health and Family Planning
For PHA who want to have children, the decision is complicated by the risk of transmitting HIV to both sexual partners and unborn children, as well as the need for comprehensive HIV medical care and family resources. Raising a family while living with HIV may require careful health management and consideration of the realities of stigma and discrimination against family members. It also involves social support and healthy coping practices to address the challenges of parenting while living with a chronic disease.
As discussed in Chapter 2, vertical transmission from mother to child in pregnancy has been dramatically reduced in Canada since the introduction of widespread testing for pregnant women and the uptake of antiretroviral medications. An increase in the desire to become pregnant among women living with HIV in Canada has recently been documented. (112-114) This increase is believed to be a result of improved technologies for treatment and prevention of vertical transmission. (114) The desire or sense of obligation of many women living with HIV to have children has also been linked to gender and cultural beliefs surrounding motherhood and womanhood. (113) A discussion of recent research on gender as a determinant of health can be found in Chapter 4 of this report.
Treatment is a factor in determining viral load and the risk of transmission in sero-discordant couples (where one partner is HIV positive, and the other HIV negative) who are trying to conceive. (115) Pregnancy planning requires careful consideration of treatment issues for pregnant women living with HIV. Adverse drug reactions may occur in pregnant women taking antiretroviral medications. A study conducted between 1997 and 2006 followed 103 women living with HIV who received HAART during pregnancy: there were 98 adverse drug reactions in 49 of the total 133 pregnancies (with some women reporting more than one reaction). Most of the adverse reports were mild to moderate. The most common adverse drug reactions were gastrointestinal, followed by central nervous system symptoms, anemia, elevated liver/pancreatic enzyme levels and skin rashes. (116)
Researchers are studying the question of whether antiretroviral medications taken by pregnant women have negative effects on their infants. Results from a cohort of 206 mothers with HIV who had been treated with antiretroviral medications from 1997 to 2005 did not indicate significant increased risk of prematurity or low birth weight in the infants born to them. Infants in this sample reached normal growth percentiles in the first two years of life. (117)
3.6.2 Parents and HIV
The relationship between motherhood and HIV infection has recently been raised as a topic of concern in health research. Studies examining women's experiences living with HIV often refer to the challenges of competing priorities associated with being a mother. (118) They struggle to balance their own health needs with the need for ensuring safe and stable family housing, finding employment, providing for and responding to the needs of their children and, for some, avoiding violence and abuse. Qualitative research suggests that women living with HIV tend to sacrifice their own health needs by putting the needs of their families first. (12;118-121)
I'm the only person who is going to look after those kids. And you know I basically sat there and just talked to myself and telling myself I gotta do this.
- Woman living with HIV/AIDS (121)
I don't have time to look after myself I think as a woman because I'm busy looking after other people. And I do...you know, and it's finally when I'm almost crashing to the bottom that I realize I have to do something for myself. And you know I have a very high-maintenance [young child, who's] got issues, you know.
- Woman living with HIV/AIDS (12)
The fear of losing children to social services as a result of HIV-related stigma has been described as an important issue by parents living with HIV/AIDS. (121;122)
I have heard from other parents' horror stories about how social workers are called for absolutely no reason. But they assume that you have a social problem in your family [if there's HIV]. Yeah, like you just seem to be flagged in a way.
- Parent living with HIV/AIDS (121)
Family income and housing stability can have an impact on the healthy development of children living with HIV. A qualitative study analyzing the experiences of 50 parents living with HIV in Ontario suggests that housing instability can lead to an unstable home environment for children and uncertainty about the future. Single motherhood and associated challenges of income and housing instability, as well as HIV illness, were identified as impacting the parenting ability of PHA. Parents living with HIV described losing custody of their children or fear of losing custody as a result of HIV illness and housing instability. (121)
I was very depressed, I was upset. Because like children and family services said ok you're sick and if you don't have family how are you going to take care of your daughter? And how are you going to take care of your son? And that really bothered me because when I was diagnosed they didn't care and then when I got sick all of a sudden my daughter was taken away from me and then my son and that really hurt me.
- Parent living with HIV/AIDS (121)
3.6.3 Children and Youth living with HIV/AIDS
There are a small group of children and youth in Canada who were infected with HIV in the perinatal period, while others became HIV positive as adolescents. This section focuses on those who have been living with HIV since birth.
Parents and medical professionals are responsible for disclosing to children the fact that they are HIV positive. This disclosure is a continuous process that starts when a child is very young and gradually unfolds. For example, a young child might be told: "This medicine helps to keep your blood strong." (123) Older children and adolescents can understand more complex medical information. It is important that they be adequately informed about relationships, sexual health and prevention before they become sexually active. Disclosing HIV infection to a child living with HIV can create serious emotional stress for both parents and children, including stress related to fear of community rejection, and fear of blaming of the mother when the child's infection has been acquired vertically. (123)
Decisions regarding HIV disclosure at school and among friends were identified as major sources of stress among children and youth living with HIV. (11;124) Two recent studies on children living with HIV in Canada suggest that children can be victims of stigma and discrimination in school and community settings. (121;124)
Youth living with HIV identify a range of concerns including isolation from both their own community and the HIV community, social rejection following disclosure, loneliness, hopelessness, treatment fatigue and fears concerning their long-term health. (11;125) For others, however, living with HIV is a relatively small part of their identity. (11)
I think we feel the same sometimes, as like, being alone, sometimes you feel no one knows you. You have something but you know, other people won't think it. But you know yourself and then you act differently among people, you're conscious about what you say.
- Youth living with HIV/AIDS (11)
I am always just doing my thing. I never stop and think - hey I got HIV.
- Youth living with HIV/AIDS (11)
Stigma and discrimination, anxieties about their health and their parents' health, and, for some, the experience of having lost a parent to AIDS, can combine to create mental health challenges, such as stress and depression among children and youth living with HIV. (124)
Matters of sexual health and romantic relationships were described as particularly concerning and stressful among youth living with HIV. (26;124;126) Youth living with HIV face the challenges of adolescence and their developing sexuality, which is complicated by issues of disclosure of their HIV status. In two Montréal studies looking at issues of sexuality among youth living with HIV since birth, the theme of fear of rejection resulting from disclosure was central. Although youth were well informed about HIV prevention, and felt a responsibility to protect their current and future partners, many did not report using condoms consistently, nor did they always disclose their HIV status.
I don't see the point of telling him, if you're protecting him.
- Youth living with HIV/AIDS (26)
When I told him, yes it was a shock, but at the same time, he saw something else besides HIV. It was the most important experience for me of my life....Whatever happens I know that he'll always be there.
- Youth living with HIV/AIDS (26)
Emerging research is addressing the challenges faced by youth living with HIV as they transition from paediatric to adult HIV care. In a study of 54 youth living with HIV living in Quebec who were transitioning to adult care, one quarter were immuno-suppressed with CD4 counts under 200 and a third of those who were tested had drug resistance. (127) Treatment adherence is a challenge for youth transitioning to adult care. Youth who felt their medications were essential for their well-being reported a more continuous adherence to treatment when compared with youth for whom their medications were seen as an indicator of difference from their peers. (26) These studies underline the importance of addressing the transition from paediatric to adult care, and show that positive peer support and flexible services can help in this transition. (125;128)
3.6.4 Violence in Intimate Relationships
Domestic violence has been studied in relation to vulnerability to HIV infection, and this issue is addressed in the other reports in this series. Studies on Aboriginal peoples and African and Caribbean populations look at the effect of domestic and sexual violence on HIV prevention and HIV infection. (12;118;129-131)
Limited research was found that examined violence and its effects on PHA. In a study examining male partner violence among 186 men with same sex partners in Vancouver, (132) HIV status was found to be a factor. Men living with HIV reported greater sensitivity to psychological abuse than their HIV negative male counterparts. Although HIV status was not significantly associated with physical abuse, HIV positive men reported greater severity of abuse than HIV negative men.
3.7 Healthy Lifestyle
Living with HIV requires special attention to health management, including eating nutritious foods and getting regular exercise. Other lifestyle choices such as smoking and drug and alcohol use impact PHA health and likelihood of treatment success. These life practices influence treatment success, treatment adherence, as well as quality of life. (36)
3.7.1 Healthy Diet
While a healthy diet is important for everyone, due to the nature of HIV and its treatment, PHA have particular dietary requirements. Eating well while living with HIV involves the deliberate dietary inclusion of complex carbohydrates, fats and proteins, specifically unprocessed fresh foods, and foods low in saturated fat. Protein is essential to the diet of PHA. Proteins are needed to produce hormones, enzymes, cell structures, and parts of the immune system, as well as to maintain lean muscle mass. (29)
PHA may experience weight management challenges as a result of HIV infection or treatment side effects. (29) A study on dietary intake and physical activity in a sample of 65 male PHA with metabolic abnormalities found that many were overweight or obese and reported diets with high fat, low fibre and inadequate micronutrient levels. (133)
Some PHA are unable to access the necessary elements for a healthy diet. A person is considered to be experiencing food insecurity when nutritionally adequate and safer food is limited or unstable. (72) Food insecurity is a problem for some PHA, particularly those who are street-involved and who are vulnerable to inadequate housing. (73;134) Ability and willingness to access healthy foods can be affected by addictions among PHA. (134) Food insecurity often occurs among younger PHA and is associated with higher likelihood of experiencing depressive symptoms, tobacco smoking and drug use. (73)
Yesterday it was difficult for being a holiday, long weekend. Four places that hand out food were shut down because of the holiday. It was hard to get some decent food because that means all the other food line-ups are doubled up and they run out.
- Man living with HIV/AIDS (134)
People are drug addicts down here. They don't want to spend their money on groceries. They spend their money on a 10 dollar toot [of crack cocaine] and get a piece of pizza afterward.
- Transgender person living with HIV/AIDS (134)
Not maintaining a healthy diet negatively impacts the outcomes of HIV treatment. (29) A study assessing treatment outcomes and body weight of 1,119 PHA in British Columbia over a nine-year period found that food insecurity was a significant predictor of mortality, particularly in underweight PHA. (72)
Physical fitness is an essential component for living well with HIV. Exercise is associated with reduced depression, increased energy, stress relief, improved sleep, better cardiovascular and lung health, and the maintenance of lean muscle. (29) A 2010 review of 14 aerobic exercise interventions for adults living with HIV concluded that it appears to be safe for PHA to do aerobic exercise (defined as a combination of aerobic or progressive resistance exercise at least three times a week for at least 20 minutes, for at least five weeks) and that this may support improvements in fitness, body composition, and well-being. The review recommended that further high-quality studies be conducted with women, older people living with HIV, and those who discontinue their exercise programs. (135)
PHA on treatment often experience weight management problems resulting from treatment side effects. Lipodystrophy, a side effect of certain antiretroviral medications where body fat is redistributed, is a concern for many PHA in Canada. (36) In response, research has examined the potential of different forms of exercise training for mediating those consequences and generally improving quality of life. (75;76) Aerobic training can help reduce total body and visceral fat, as well as normalize lipid profiles in PHA. (133) Increased physical activity is associated with decreased pain-related and increased mental quality of life. (41)
3.8 Sexual Health
Healthy sexuality is the "presence of a satisfying, respectful and beneficial sexual part of your life." (29) It involves the ability to have pleasurable and safer sexual intercourse with a consensual partner in an environment free from discrimination, threat, coercion or violence. Living with HIV has an impact on the infected individual's sexuality as a result of the health challenges associated with HIV infection and treatment. Living with HIV can have a restrictive effect on sexual relationships due to concerns about prevention of onward transmission and HIV disclosure can complicate intimate relationships for PHA and their sexual partners.
Men and women living with HIV can experience complications with the physiological effects of HIV infection on their sexual health. Forms of sexual dysfunction in men living with HIV may include erectile problems, difficulty ejaculating, premature ejaculation, loss of libido, lack of pleasure from sex, anxiety over sexual performance and pain during sex. Some women living with HIV have reported a decline in sexual interest, difficulty attaining orgasm, and pain or reduced pleasure during sex. (36)
A study examining the relationship between sexuality and HIV infection among 20 women living with HIV in Canada, describes HIV as inhibitory of women's sexuality. (27) The women discussed feelings of diminished intimacy and spontaneity in sexual relationships as well as feelings of responsibility for protecting others from infection and fear of infecting others. Women also described being considered "vectors" of the virus and discussed how this contributed to avoidance of sex or abstaining from sex, and the implications of this stigma on their health. (27)
There is little current research on the relation between sexuality, sexual dysfunction, intimacy, sexual identity and the experience of living with HIV. There is some qualitative evidence to suggest HIV often has a restrictive effect on sexuality as the fear of infecting others may affect sexual relationships. (28;36)
3.9 Aging with HIV
PHA in Canada are aging - along with the general population - and with aging comes various health challenges and risks. In addition, PHA may experience symptoms associated with aging as a result of HIV disease or the side effects of antiretroviral medications.
Advances in treatment are allowing PHA to live longer. PHA are now expected to live a relatively normal lifespan; however, they remain susceptible and at an earlier age than the general population to specific chronic conditions associated with aging, including cardiovascular disease, diabetes, arthritis, dementia, and some cancers. Some of these conditions are manageable.
The question of whether PHA experience accelerated aging, either caused by HIV or by antiretroviral medication is the subject of current discussion and research (29;36) although at the time of this review, no current Canadian research on this subject was found. Researchers are examining the role of inflammation in chronic disease, specifically in how it may accelerate those conditions that are seen as aging related, such as cardiovascular disease. The findings suggest earlier HIV treatment initiation, and lifestyle interventions, such as smoking cessation and obesity prevention, may help mitigate the effects of inflammation as it relates to cardiovascular disease in PHA. (136)
Older adults tend to be diagnosed in later stages of HIV infection, which can be related to failure of healthcare providers to consider older adults as a population at risk of HIV infection. Older adults often present with AIDS-defining illnesses at the same time they receive their HIV diagnosis. (137) Healthcare providers may assume that symptoms of HIV/AIDS, such as hearing and memory loss, are part of the normal aging process and they may not think to check for HIV infection. Moreover, the perception that older adults are less likely to engage in sexual activity may lead healthcare providers to neglect sexual history in risk assessment. (137)
Some authors have suggested that older PHA experience a "double jeopardy" of HIV stigma and ageism, where they perceive ageism in accessing AIDS service organizations, and HIV stigma in accessing non-HIV services. Others point to the specific advantages that older adults may have, due to experience and problem-solving skills. The length of time in which an older adult has been living with HIV has important implications on their experiences. (138)
In a paper looking at the experience of aging among a group of gay men living with HIV in Vancouver, the experience of those who contracted HIV early in the epidemic was contrasted with those who were infected later in life. (138) Both groups faced challenges in managing their health and treatment, and some expressed fears of aging without a partner and social exclusion. Long-term survivors had lived through multiple losses and dramatic physical and emotional changes in their life trajectories. Most of them had lived much longer lives than they could have imagined when first diagnosed. Some expressed disillusionment with the current gay lifestyle, which they saw as having lost a sense of community orientation and the former urgency that led the early response to HIV. For the newly diagnosed older men, there was a greater sense of fear for the future and a strong desire for social support and community with other gay men. (138)
3.10 Palliative Care
Comprehensive and informed HIV/AIDS-specific palliative care is essential for helping PHA manage the end of their lives in the most dignified and comfortable way possible. (139) Palliative care is an essential component of any HIV/AIDS care service. (36)
Appropriate end-of-life care for PHA requires integrated pain and symptom control, alongside supervised management of antiretroviral medication. Changes in the causes of death among PHA in Canada resulting from treatment have altered the nature of palliative care for this population. (140;141) Specifically, there is a need to consider symptom and pain management strategies for non-AIDS-defining illnesses.
The challenges of providing palliative care for PHA who are homeless and street-involved has received recent attention. High mortality rates among marginalized PHA hold implications for palliative care interventions. A recent study examining the effectiveness of shelter-based palliative care among a cohort of terminally-ill homeless individuals in Ottawa, 25% of whom had HIV, found a heavy burden of co-morbidities including physical illness, psychiatric conditions and addictions. (142)
PHA and those affected by HIV experience multiple forms of bereavement throughout the course of their lives. Many forms of loss and grief associated with HIV are discussed throughout this report, including loss of jobs, loss of loved ones through rejection and abandonment, and loss of a former life. This section will review the literature on bereavement related to the loss of loved ones who died from AIDS, and how this experience impacts surviving PHA.
A process of grief and acceptance accompanies the loss of a loved one. For PHA who have survived a partner who died of AIDS, this experience can be complicated by feelings of anger, frustration, guilt, and fear of death. (143-145) Moreover, PHA may experience death and loss frequently as a result of being linked together through social networks related to HIV, as well as other social networks, such as a local gay community. In an Ontario study on AIDS-related bereavement, 67 participants (86% of whom were PHA), reported experiencing an average of 157 AIDS-related deaths and 76 non-AIDS-related deaths. They also reported many other significant losses, such as break-ups with partners, losing friends and family, career, health, independence, and body image. Physical and mental effects of this grief and loss included insomnia, fatigue, depression, anxiety, anger, frustration, and hopelessness. (144)
AIDS created a great deal of conflict for me because at a relatively young age (25) I began to experience the loss of my social supports - an experience that even my parents hadn't begun to have. I didn't feel that I could talk about this with my family; I felt a stigma because it was AIDS.
- PHA (145)
My partner Keith and I were both HIV-positive, and I expected to die first. But in 1991 Keith died - I lost the love of my life. After that it was just one death after another. Because it was so painful, parts of me shut down.
- Gay man living with HIV/AIDS (145)
Loss of loved ones may lead some PHA to engage in negative coping practices and risk behaviours that could endanger their health. (144) On the other hand, those who have lost loved ones from AIDs are sometimes able to find meaning in their bereavement. PHA have also reported changes in spiritual and faith systems resulting from bereavement. (144) In a qualitative study on HIV and bereavement, 15 caregivers who had cared for someone who died of AIDS were interviewed. Participants (nine of whom where themselves living with HIV) described both positive and negative changes including emotions of loss, distress and fear of death, and feelings of support, growth and spirituality. (146)
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