Chapter 4: Population-Specific HIV/AIDS Status Report: People living with HIV/AIDS - Current Evidence on Social Determinants of Health
Chapter 4 - Current Evidence on Social Determinants of Health Affecting People Living with HIV/AIDS
The health and quality of life of people living with HIV/AIDS (PHA) are affected by multiple determinants of health. Other reports in this series have looked at how the determinants of health affect vulnerability to HIV infection, whereas, the research reviewed for this chapter shows how the determinants of health continue to influence health and quality of life for PHA in Canada after their infection with HIV. The influence of these factors on the physical and mental health and mortality of those living with HIV and AIDS will be examined.
The relationship between determinants of health and HIV/AIDS is complex and multi-directional. While determinants of health can contribute to vulnerability to HIV infection, living with HIV can itself have an effect on determinants of health, such as income, social environments, and personal health practices.
While there are common factors influencing the determinants of health of PHA in Canada, over all, this population is highly diverse. There may be little shared history between an urban gay man, a refugee from West Africa, and a street-involved person who uses injection drugs. These diverse experiences continue to shape the lives of people after HIV infection. The experiences of PHA who live in rural and remote areas differ from those who live in urban centres. Age, gender, and culture also influence PHA resilience, health, and quality of life.
Although the populations most affected by HIV in Canada may have very different life experiences, they may, however, share the experience of being marginalized and victims of different types of stigma and discrimination, including homophobia, racism, and sexism.
This chapter will examine the available research findings on PHA of all walks of life. It provides a synthesis of the current evidence on the social determinants of health and HIV/AIDS as it relates to PHA in Canada. Specifically, this chapter will address early childhood development; income, socio-economic status and education; employment and working conditions; social environments, social support networks; physical environments; culture; gender; access to health services, and personal health practices. Themes of stigma and discrimination against PHA, and issues of HIV disclosure are also addressed in the chapter.
It should be noted that the international literature has established that there are biological differences among PHA that influence the duration between HIV infection and the onset of AIDS-defining illnesses. Some people progress to AIDS within a few years, while others may be infected with HIV for more than 10 years but remain in good health without initiating antiretroviral treatment. Since this report focuses on the social determinants of health, it will not look at research on this topic.
4.1 Early Childhood Development
Healthy early childhood development is strongly linked to a healthier adult life. Obesity, mental illness, vulnerability to violence, addictions, and criminal behaviour may have origins in the early years of childhood. Conversely, positive involvement of parents and stimulating home environments can have a positive impact on the child's health and development into adulthood. Factors influencing healthy childhood development include adequate family income, stable housing, effective parenting and family functioning, employer support for parents, and supportive community environments with accessible social programs and resources for parents. (1)
Experiences of abuse and neglect in early childhood can influence HIV risk behaviours in adolescence and adulthood, thereby contributing to vulnerability to HIV infection. (2-4) In a study of Aboriginal youth in two British Columbia cities, a history of non-consensual sex during childhood was associated with increased risk of HIV infection. (4) Early childhood development may also influence the health status and quality of life of adult PHA; however, no research was found that looked at the linkages between these specific factors. Furthermore, very little research on HIV/AIDS in Canada addresses issues of early childhood development among children (0 - 6 years) living with HIV.
4.2 Income, Socio-economic Status, and Education
Socio-economic status is the relative position of an individual or a group to others within a hierarchical social structure, based on education, income, occupation, wealth, and place of residence. Higher social and economic status is associated with better health; it has a strong influence on living conditions such as "safe housing" and the ability to buy sufficient food. It is associated with increased control over life circumstances and better coping skills for dealing with stress. (1) This section looks at income, socio-economic status, and education together, because these factors are usually associated with one another, and most definitions of socio-economic status include income and education.
The relationship between HIV and income is bi-directional. While poverty itself is not a risk factor for HIV infection in Canada, many of the groups at risk for HIV - Aboriginal peoples, people who use injection drugs, people from countries where HIV is endemic - live in poverty. (2;5;6) For those with relatively higher incomes prior to infection, the challenges of living with HIV can mean that people have to leave or reduce their paid employment, thus experiencing a reduced income.
Income is a predictor of health-related quality of life for PHA for both mental health and health distress Footnote 13. (7) Food insecurity, an important marker of low income, is associated with treatment interruptions and HIV-related mortality. (8) Poor physical health-related quality of life is associated with unemployment. (9)
In a series of focus groups with 105 PHA across Canada, PHA of higher socio-economic status were found to encounter less discrimination as a result of having more resources, the ability to afford medical services beyond what provincial health insurance plans provide, and the ability to avoid reliance on social services. Homeless PHA were seen as experiencing more discrimination as homelessness in and of itself is a source of stigma. (10)
There was no evidence found about literacy, and limited information found about education, as independent factors influencing health-related quality of life. One study of 308 PHA in Southern Alberta found that those with higher levels of education had higher rankings in several quality of life ratings, including energy, mental health, health distress, and cognitive function. The study also found that monthly income and employment were predictors of positive quality of life. (7) Research on Aboriginal peoples, people who use injection drugs, and sex workers has found that lower levels of education are common, and contribute to their vulnerability. (2;5)
4.2.1 Socio-economic Status and Treatment Access
Low income and socio-economic status are associated with poor treatment access. In British Columbia, there is universal free treatment; yet in a study of the 1,239 HIV-related deaths in that province between 1995 and 2001, 32.8% of those who had died had not received any HIV treatment. Aboriginal peoples, people with lower incomes and women were more likely to have not accessed treatment before death, and if they had accessed treatment, were more likely to have discontinued it. (11) A subsequent study of HIV-related deaths in British Columbia between 1997 and 2005 found that 40% of PHA died without accessing treatment. The same study also looked at treatment-naive patients who did access Highly Active Antiretroviral Therapy (HAART), and found that unemployment was a significant predictor of late access (CD4 count < 50). Further, among those who had accessed HAART, living in a neighbourhood with low levels of post-secondary education and high percentages of poverty was associated with HIV-related mortality. (12) In another British Columbia survey with 764 PHA respondents, antiretroviral medication use was associated with graduation from high school and having a household income greater than $10,000 a year. (13)
4.2.2 The Impact of HIV/AIDS on Income
Living with HIV/AIDS usually has a significant effect on income, regardless of income prior to acquiring HIV. The cost of HIV medication can be a significant burden, although for most PHA, antiretroviral medications are covered either fully or partially by a provincial health insurance program or through private insurance. Complementary medications and therapies are not always covered, nor are the costs of general prescription and non-prescription medications. Other costs such as dispensing fees, nutritional supplements, special foods, transportation, childcare and/or parking for medical appointments, and other services are not usually covered.
Not only is living with HIV costly, but income for many PHA is reduced as the associated health problems mean that they either leave paid employment or reduce their working hours. In a study of 308 PHA in Alberta, made up largely of relatively well-educated gay men (only 16% of the sample had not finished high school, and 59% had some post-secondary education or a college degree), only 58% were employed, and 27% were living below the poverty line. (7)
PHA in Canada have access to a wide range of income sources, from paid employment to living on social assistance or disability benefits. PHA who receive income support may rely on income security programs such as Employment Insurance sickness benefits, the disability benefits of either the Canada Pension Plan or the Quebec Pension Plan, private long-term disability insurance, and provincial and territorial social assistance programs. Coverage varies by jurisdiction, and for many, this means that they have to apply to many different programs, each with different mandates, definitions of disability, eligibility criteria, forms, and adjudication procedures. Lack of coordination between jurisdictions and programs can result in challenges for those struggling to understand how available programs work. A further complication is that some programs are indexed to the cost of living, while others are not. (14-18)
Although figures vary by jurisdiction and by type of income support, many PHA living on income support are living below the low income cut-offs established by Statistics Canada. (16;17) Although for some PHA income support provides an opportunity to stabilize their symptoms and manage their health, most PHA find the levels of benefits inadequate. For many, living on social assistance is also demoralizing and stressful. (17;19;20)
Basically, what concerns me is the health care and welfare systems in the sense of the quality of life we're expected to live with. I feel it's been reduced to the extent that it creates a great deal of stress.
- PHA (19)
When you're on social services in this province... it isn't making you a very good living. People find other ways to supplement their income or [go to a] food bank or wherever you can.... I mean if we had enough to maintain a quality of life through income [it] would probably make things easier. If I didn't have to worry about food in the cupboard and bills getting paid, I think I wouldn't worry about whether or not I was going to get sick next week.
- PHA (20)
In a study of 91 Canadian families with HIV-positive mothers, finances were a concern for the majority of parents (75%), contributing to parental and family stress. The majority (60%) had experienced a loss of income after diagnosis, while 31% had a stable income but increased expenses. (19) Parents often prioritized their children's needs over their own health needs.
I don't have sufficient funds for special diets. On assistance you end up not eating so your children can eat, which of course leads to disease progression. Not adequate money for clothing in winter causes illness. Many medications are not covered; even simple meds like children's Tylenol are costly on [a] limited budget.
- Woman living with HIV/AIDS (19)
4.2.3 Remaining at or Returning to Work
Several studies look at the trade-off for PHA between life on income support and returning to, or remaining in, paid employment. Many factors play into the decision to return to work, including personal health status, financial status, sense of isolation or support, concerns about workplace stigma and discrimination, concerns about a changed workplace (for those who have been unemployed for a long time), and fear of losing benefits. (14;17)
The fear of losing government income and medication coverage was widely identified as a barrier to (re)entering the workforce. PHA encounter many administrative and systems barriers, and challenges that can interfere with their desire to return to work when managing the medication and other costs associated with their condition. Disability and pension plans provide a limited income and access to full coverage for medications and other health services. Those seeking to return to work fear losing this coverage for medications. For many, paid employment does not pay enough to cover the cost of their medications. (14;15;17;20-24) For PHA who are parents, the difficulty of finding and paying for quality childcare can be an additional barrier. (22)
Most Canadian provinces have drug plans in place that cover medications to varying extents, but most cannot be accessed until private insurance has been exhausted. PHA are not always aware of these programs, and may have the misconception that returning to work will require them to pay for all of their medications. (10) Furthermore, antiretroviral medications may be covered in some cases, but other medications, including those to offset side effects, may not be covered. (14)
If I worked full-time and went off my disability, I'd never be able to get a job that would pay my drug costs. My drug costs, my housing and day care, and food. I would never be able to make that much money.
- Woman living with HIV/AIDS (22)
I wasn't on welfare because I wanted to [be]. I wanted to work and do everything. Why isn't there any kind of program to help a disabled person get back to working?
- PHA (23)
The fear of losing benefits is also experienced by those who are working. PHA who work for employers with a drug plan can feel trapped in that job, as moving to another employer or leaving the workforce could mean a loss of benefits or long-term disability coverage. PHA who experience this "job-lock" may feel frustrated and that their career options and progress have stalled. (10;15;20)
It's always in the back of my mind that I will be covered as long as I'm here [at present employer]. You know what I mean? That's an insecurity that there's no way you can deny it.
- PHA (20)
PHA can find the administrative procedures necessary to access programs - whether disability, income support, or training - challenging and frustrating. Some PHA reported that they needed support from AIDS service organizations or healthcare providers to fill out the applications. (17)
You know, you get to them and they say "no" we don't do that; do you want to go over here and try somebody else? And I guess it's maybe all the legwork that you have to do to access some programs...just a never-ending list of steps. They're always, "Okay, you've got to go to these people, do this, do that."
- Gay man living with HIV/AIDS (21)
Much of the research identified a sense of frustration among PHA with the "all or nothing" approach of disability programs, where in order to access income support and medication coverage, PHA and others with chronic, episodic disabilities have to stop working altogether. Many PHA would prefer to work part-time or full-time, but with continued support for medications, and with the flexibility to move back and forth between the workplace and disability benefits, as their health allowed. (7;14;16;20-24)
...I mean, the way it was explained to me is you are either disabled or you are not. You either can work, or you can't. So someone who can work 20 hours a week, make enough, thousand, fifteen hundred dollars a month to support themselves, take care of their personal needs, but can't afford to pay for thousands of dollars of drugs every month.
- PHA (14)
It was difficult enough to get onto disability benefits and then even more difficult to get additional benefits by tweaking legislation and using it to get more funds. If I went back to work they would close my life and I would lose all of that and the way legislation is now you'd never get it back.
- PHA (20)
4.3 Employment and Working Conditions
Employment has a significant effect on a person's physical, mental, and social health, because paid work provides a sense of identify and purpose, social contacts, and opportunities for personal growth. (1) This section looks at paid employment; however, it is important to note that many of the positive benefits of work - engagement with others, identity, self-worth, meaningful work - can be achieved through unpaid volunteer work, including community involvement and activism, which is an important activity for many PHA. (22) This topic will be discussed in Section 4.5 Social Support Networks.
After the introduction of antiretroviral medications, and as these regimens have improved, returning to or maintaining employment have become options for many PHA. In a study of 308 PHA in Southern Alberta, 58% were employed, and of those, 85% worked full-time. Employment status was strongly associated with improved quality of life. (7)
In a British Columbia study of 392 PHA on antiretroviral medications who had been unemployed at baseline, only 16% were employed after one year. Having a baseline income over $10,000, being on long-term disability or unemployment insurance at baseline and having better health, were factors found to be associated with a return to employment. A history of injection drug use and having provincial assistance as an income source were negatively associated with employment. Those on provincial assistance (over half of the participants) were likely reluctant to lose a guaranteed source of income, especially if they could only find part-time or low-paying employment. (25)
4.3.1 The Benefits of Work
In addition to financial security, benefits of employment noted in the research included independence, identity, empowerment, opportunities for socialization and participation, feelings of recognition and self-worth, confidence, satisfaction, a sense of purpose and fulfilment, daily structure, and a distraction from health concerns. (10;14;20-23) For some PHA, a return to work is a sign of the re-establishment of good health and independence. (5;22;23) In a study of women living with HIV/AIDS, the desire to set a good example for their children and other women living with HIV/AIDS was also cited. (22)
I want to feel productive and that I'm active, and I think that's the sort of self-preservation in terms of feeling useful. I want to keep the paid employment. I need it. I need it financially; I need it just to be out doing something.
- Woman living with HIV/AIDS (22)
I loved the get up and go; I loved the responsibility; you know the feeling of self-worth and now I'm missing that.
- Woman living with HIV/AIDS (22)
Despite the positive benefits of work, some PHA feel that they must choose between work and health, fearing that the demands and stresses of paid employment will have a detrimental effect on their health.
You can't afford to take that chance because ultimately your health is more important than just making money. I gave up all that. It's survival; that's all there is to it. It's just pure survival.
- PHA (20)
I literally had to decide at one point to do something about it because if I didn't [stop working] I was going to die, and that just wasn't an over-dramatization at all. That was just a certain fact.
- PHA (20)
4.3.2 Managing Health at Work
As discussed in Chapter 3, living with HIV may mean living with an episodic disability where health can be interrupted by unpredictable periods of ill-health and disability. (15-17;26;27) This uncertainty and the effects of both HIV and HIV medications affect the working lives of PHA, adding to stress and fears about poor performance and potential job loss.
Episodes of ill health, ongoing symptoms such as nausea and diarrhoea, rigorous medication regimes, side effects of medication, frequent medical appointments, heightened stress, and fatigue are major barriers for some PHA in seeking and maintaining employment, or in maintaining the same level of work as they had previously. (21-23)
For me to hold down a job would be impossible. There's too many doctors' appointments, too many mood swings and depression, different side effects from the medication.
- PHA (23)
I've been taking them [HIV medications] for a full year and one of the side effects that was giving me a lot of trouble was that the medication was affecting my sleep patterns and when I already had a very hectic schedule that was really starting to catch up to me.
- PHA (21)
The need for workplace supports was identified, including flexible schedules, the ability to take time off for treatment and recovery, a need for frequent washroom breaks, the ability to refuse overtime, the support of understanding managers and colleagues, and safe environments. (10;20-23)
Many PHA find it difficult to coordinate medication regimes with work and family schedules. For those whose HIV status is not public, there are challenges in hiding their medication. PHA fear that the challenges of managing their health in the workplace, including time away due to medical appointments or illness, may jeopardize their employment. (22;23;28)
I have to worry about hiding it and how am I going to take my pills? Or having to worry about taking the pills and having the shits for an hour and can I get to the washroom which is way down the hall.
- PHA (28)
Shift work can conflict with the taking of medication, causing difficulties in adhering to a strict schedule. I try to go with the schedule. I want to stay alive too, so I do take them [medications]. I try to take them on a regular basis. I know it fluctuates a lot. I try to shift them. I push them four hours each way depending which way I'm going.
- PHA, shift worker (28)
Newer HIV treatments are resulting in considerable improvements in symptom management and quality of life for PHA, and may mean that the challenges of managing medication regimes and side effects will be reduced. Further follow-up will be required to track the impact of these new treatments on PHAs' ability to manage their health at work.
4.3.3 Stigma and Discrimination in the Workplace
Human rights legislation and labour and employment laws protect PHA from discrimination in the workplace; however, incidents of discrimination continue to occur. (15) Stigma and discrimination appear in the workplace in different ways, ranging from more subtle acts of social rejection, through harassment, to refusing to hire someone who is HIV-positive. Although firing someone on the grounds of their HIV status is illegal in Canada, PHA may experience harassment and pressure that results in them deciding to quit their jobs. (29)
In a series of focus groups with a total of 105 PHA, some reported that they had been restricted to positions where their interaction with the public was limited; for example, those in the hospitality or the food industry reported being moved away from food preparation and serving. PHA also reported concern and suspicion about colleagues' attitudes, with some concerned that they were fired or treated poorly because of their HIV status, but with no concrete proof. (10)
I also think that if someone is found out to be HIV-positive that they are going to lose their job or whatever, or they're not going to be considered for a promotion or position because of their health.
- PHA (21)
Disclosure of HIV status in the workplace is a challenge for most PHA. For many, disclosure is a choice - they can choose either to keep their status private or inform their colleagues. Many PHA successfully hold jobs without disclosing their status, seeing this as a personal health matter. (10) For others, disclosure of their status is involuntary - either due to gossip, symptoms, or the demands of medical appointments and medication regimes. Once made, disclosure cannot be retracted, so fears and concerns about stigma and discrimination leading to rejection and loss of employment are a reality for most PHA. (14;20-23) For some, however, particularly those who work in an AIDS-aware environment, disclosure is not seen as a problem. (10;14;21;23)
I felt very compelled to tell my supervisor. I spoke to somebody in law and she put me into perspective by saying that my relationship with her and my doctor is a relationship bound by confidentiality, where my relationship with my boss is not really and things do leak and I wouldn't be protected.
- PHA (23)
They don't want somebody with HIV coming back. I was management so I know the little tricks of the trade that were going on in the branches with some of these managers - no advancement [for a PHA]
- PHA (23)
Hiding one's status in the workplace can be stressful. In some cases when an individual discloses their HIV-positive status to their employer, managers have advised the employees to keep their status a secret in the workplace.
I'm not allowed to let anybody know that I'm HIV-positive.
- PHA (10)
I was on my feet all the time and by the end of the day I'm exhausted and tired, I go home, I go to sleep tired. I wake up tired. I mean hiding it all [HIV status and medications] just didn't work out well for me. I just decided to give up.
- PHA (14)
Disclosure of HIV-positive status is necessary to be able to access certain disability insurance and healthcare coverage. This creates a dilemma for PHA: by disclosing they receive support, but lose their privacy and confidentiality; and by not disclosing, they lose the possibility of disability insurance and healthcare coverage. Furthermore, people may be forced out, or refused coverage, as the employer does not want to pay an increased amount for health insurance. (10;14)
Despite the challenges and barriers that PHA may confront in the labour force, most consider employment to be a positive and essential component of their lives that provides structure, purpose, satisfaction, confidence, and a way to participate in society. (14;20;22;23)
4.4 Social Environments
The ability of PHA to manage their health and cope with the challenges of living with HIV depends partly on their social environment - their family, peers, community, and workplace. Aspects of the social environment influence health outcomes among PHA and are fundamentally related to other determinants of health, including culture, gender, income and education level, social support networks, individual coping skills and behaviours, and access to health services. (10)
4.4.1 Stigma and Discrimination
Much of the literature examining the social environment of HIV and AIDS highlights the persistence, nature, and consequences of stigma and discrimination for both those infected with, and affected by, the virus. UNAIDS describes HIV-related stigma as "a process of devaluation of people either living with or associated with HIV and AIDS." Discrimination is defined as "the unfair and unjust treatment" of PHA that may occur at political, economic, social, psychological, and institutional levels. (30) Stigmatization of PHA often relates to existing negative beliefs and attitudes toward sexuality, same-sex relationships, commercial sex work, and drug use. Stigma is understood to build upon and reinforce discrimination based on race, gender, and sexuality. HIV-related stigma may also stem from ignorance regarding the way HIV is transmitted and fear of disease and death. (10;30-32)
Canada has a number of laws at the federal, provincial, and territorial levels that are designed, in part, to protect PHA from discrimination. The equality provisions of the Canadian Charter of Rights and Freedoms protect individuals from discriminatory government action. Federal, provincial, and territorial human rights statutes prohibit discrimination by private actors, such as persons and corporations in areas such as employment, service delivery, access to facilities and goods, contracts, accommodation, and membership in unions or other associations.
Despite existing protections, stigma and discrimination against PHA persist in Canadian society. Results from a national attitudinal survey on HIV/AIDS conducted in 2006 showed that people living in Canada exhibit mixed feelings regarding PHA. (33) Only 35% of those surveyed believe PHA should be allowed to serve in positions that serve the public, such as dentists. Although the majority of Canadians do not blame PHA for their condition, 10% of respondents think that those who acquired HIV through sex or injection drug use got what they deserved. Nearly one in three Canadians does not believe PHA should have the right to be sexually active. (33) Levels of comfort and tolerance with PHA were lower among respondents with less knowledge of HIV/AIDS, stronger religious ties, lower education and income levels, people born outside Canada, and senior citizens (65 years and older). Canadian women exhibited slightly more tolerance with PHA than did Canadian men. (33)
In 2011, a similar study was conducted to determine how attitudes and perceptions have changed, and found that substantial and increasing majorities of Canadians report being comfortable interacting with PHA. More than three quarters said that would be comfortable working in an office with a PHA; 49% said they would be very comfortable, up from 42% in 2003. Sixty percent said they would be comfortable if their child was attending a school with someone who was known to have HIV, up five percentage points since 2006. (34) Despite this encouraging change, it should be noted that a significant proportion of Canadians are still not comfortable interacting with PHA.
A 2009 Quebec telephone survey on HIV/AIDS in the workplace also found generally positive attitudes to working with PHA: 89% stated that it was very or somewhat probable that they would have good relationship with a colleague living with HIV. (35) In a related web-based questionnaire filled out by 111 managers and executives of Quebec companies, 93% of respondents felt that a person living with HIV could enjoy a "normal career," although 38% of the total would avoid hiring a PHA if possible, citing fears of absenteeism and fear of, or unease with, HIV. (36)
4.4.2 Experiences of Stigma by PHA in Canada
PHA in Canada continue to report experiences of stigma and discrimination as a result of their HIV status. A 2008 survey of 381 PHA underlined that the vast majority of those surveyed (82%) still view stigma as a major problem in their lives. Sixty-seven percent felt that HIV affected their social life, and 45% felt isolated. (37;38) Another qualitative study of 105 PHA, conducted in 2007, identified common experiences of discrimination in communities, workplaces, education, housing, among family and friends, and in the healthcare system. (10)
Many PHA are members of marginalized social groups and engage in behaviours stigmatized by society. As a result, PHA often describe experiencing layers of stigma and discrimination. (10;39;40) Some PHA feel that they experience more stigma from being gay and/or a person who injects drugs than from being HIV-positive. (40)
Hatred is a terrible thing, and when you're a victim - if you're Black or a religious designation, or a social or sexual orientation, and somebody picks on you and you don't know who it is [sic] So you've got to be very careful when you fall into a category [sic] imagine if you're Jewish with HIV and you're gay - you could be a triple target in certain areas of society. Or how Natives are picked on and...stereotyped.
- PHA (40)
HIV-related stigma is sometimes associated with negative perceptions of modes of HIV transmission, including unprotected sex and injection drug use. (10;41) These activities may be considered by some to be shameful, thus resulting in condemnatory attitudes toward PHA. Some PHA have also identified illness and the changes in physical appearance resulting from lipodystrophy (a side effect of certain medications where body fat is redistributed) as a source of stigma. Fear and ignorance among the Canadian public regarding how HIV is transmitted and sensational media portrayals of PHA are believed to be the source of this stigma towards PHA. (10)
Negative attitudes surrounding sexual orientation add an additional layer of stigma for many PHA. Many men living with HIV have stressed the homophobic nature of discrimination they face. (10) As a result of the North American HIV epidemic having first occurred in gay communities, the false perception of HIV/AIDS as a "gay disease," or the notion that all gay men are HIV-positive continues to contribute to stigma and discrimination against PHA. (10;42)
Some literature on stigma and PHA in Canada addresses differing experiences based on gender. (10;31;32;39;43) The results from a qualitative study of 105 PHA in Canada demonstrated that some participants - primarily women - identified gender as a factor influencing the kind and degree of discrimination they experience as PHA. These women highlighted perceptions of their involvement with commercial sex work and/or promiscuity, and stigmatizing of their children, as gender specific discrimination. (10) The literature also documents the perception that most HIV funding is targeted toward gay men's issues and that many AIDS service organizations exhibit gaps in services for women. (10;44)
My HIV status doesn't just affect me. It affects my job. It affects the people I work with. It affects my daughter. It affects the school she goes to and how the neighbourhood in general reacts to us and our family because I think there is such stereotypes about everybody and HIV. But I think that the ones about women are pretty strongly negative. And if you have negative thoughts or whatever about me it also impacts the rest of my life.
- Woman living with HIV/AIDS (31)
PHA may feel that stigma and discrimination against them occurs at the institutional level of society. (45) In other words, PHA may feel that aspects of the Canadian health and social services system, as well as Canadian law and legislation, are discriminatory against PHA.
The system is very discriminating and especially to us immigrants. What I found quite challenging with the system [is] the fact that I'm an immigrant, and a single mother and a woman with HIV and a black woman was all working against me.
- Woman living with HIV/AIDS (45)
Some PHA may internalize HIV-related stigma and discrimination by coming to believe or endorse negative attitudes toward themselves. Literature on stigma and discrimination often refers to the process of internalizing shame and blame associated with HIV as "self-stigma." (10)
After I was diagnosed HIV-positive, I felt dirty all the time. I didn't feel clean. It didn't matter how much I showered.
- PHA (10)
PHA have also described accepting irrational fears that they will transmit the virus to others, resulting in avoiding occupations, friends and family, having children, and from seeking intimate partners. (10)
4.4.3 Impacts of Stigma and Discrimination on PHA in Canada
Research has documented many potential negative health consequences of stigma for PHA in Canada. (37;39;40) While the impacts of stigma and discrimination are varied among PHA, several common themes emerge from the literature. Stigma and discrimination against PHA reinforces existing social inequalities and can lead to exclusion, withdrawal, and social isolation. (10;39;41;42) Stigma is associated with feelings of low self-worth, psychological distress, loneliness, hopelessness, depression, and other negative mental health consequences for PHA. (31;41;43;45-47) Harassment of people living with HIV can lead to housing instability, insecurity, and negative coping practices. (45)
The potential consequences of disclosing one's HIV infection to community members, friends and family, intimate partners, employers, and others is an important issue for PHA in Canada. (10;39;40;48) Fear of stigma may cause PHA to avoid disclosing their HIV infection. Social discrimination, effects on future relationships, sex life, overall reputation, and criminal convictions in situations of non-disclosure are common causes for reluctance to disclose.
PHA may have disclosure concerns pertaining to fear of rejection and abandonment by friends and family, as well as fears of discrimination, violence, and victimization.
I wasn't ready to address my HIV because of the simple fact that I'd seen other girls in the system [prison] being shunned from having friends and going out and doing things, and it was awful. And I knew I had this deep little dark secret behind me that I was sick, and I thought, I can't even express how I feel now, because look at the way they're treating that girl.
- Aboriginal woman living with HIV/AIDS (39)
Stigma has a negative impact on prevention efforts by contributing to secrecy and HIV non-disclosure, reinforcing HIV risk and discouraging condom use in some communities. (42) Fear of stigma and discrimination has been found to contribute to silence and denial around topics of sex, sexual health, drug use, and sexual orientation. (10;39)
PHA are diverse, and the experience of stigma and discrimination varies for different groups. For example, gender-based discrimination against women living with HIV can negatively affect access to health services, particularly in the area of reproductive health care. (43;44)
Finally, stigma and discrimination have been identified as factors preventing full participation of PHA in the development of research, policy, and programming targeting them. (31;49) Efforts to involve more PHA in community-based research activities are often promoted, in keeping with the principle of Greater Involvement of People Living with HIV/AIDS (GIPA). A recent analysis of data, taken from a broader study on barriers and facilitating factors in relation to HIV-related community-based research in Ontario, aimed to determine the success of these efforts in applying the GIPA principle. The study found that, compared to researchers and frontline service providers, PHA were the least involved in all stages of community-based research projects including input, design, and outcome. The results suggest that stigma, health challenges, PHA's mistrust of researchers, lack of credentials (diplomas, degrees, certifications, etc.), and lack of capacity to engage in research, act as major barriers to the success of GIPA implementation in the community-based research response to HIV/AIDS. (49)
4.5 Social Support Networks
Access to information resources, social networks, and social support, as well as connections to culture and community, can influence health outcomes. (1) Lack of social support, or barriers to accessing social resources have negative health consequences for PHA. (31;39;50) Nevertheless, many PHA demonstrate remarkable resilience in overcoming the impacts of stigma and discrimination by drawing on a rich variety of social support resources.
4.5.1 Social Networks
Supportive family and friends and interaction with peer support networks are important sources of social capital for PHA in managing their health. (10;39;48;51) Connections with social networks allow PHA to access health information and resources and reduce the social isolation caused by stigma. Connecting with other PHA has been described as an important source of strength and resilience for many PHA. (39;41;44;50;52)
I find out little bits from other people that are HIV [positive]. I go to [HIV medications support program for marginalized persons] every day, and I pick up little things from there again, from other people that go there. Just little things, like things you shouldn't do or things that you should have or you shouldn't be taking, or what they feel is good for them. I wonder if I should try it for me, or if they're...finding this out from their doctor or where they're finding it out from.
- APHA (39)
It's so much easier to be able to talk one on one with someone that has it because then they know what you are talking about and they know the kind of feelings that you're going through because they've gone through it.
- Woman living with HIV/AIDS (48)
Conversely, lack of social support can inhibit the willingness of PHA to disclose their HIV infection to family and friends, intimate partners, and fellow community members. (39) Loss of social support as a result of stigma and discrimination can affect PHAs' access to health and social services, as well as information resources. Feelings of social rejection and isolation can contribute to negative mental health outcomes including depression for PHA. (10) In a study of 23 women living with HIV, participants described lacking supportive networks, as well as living in poverty, suffering from depression, experiencing barriers at work, and difficulty tolerating symptoms as factors that prevented them from fully participating in social life. (31)
Social networks can pay an important role in sharing health information. In addition to healthcare providers, PHA may rely on AIDS service organizations and on-line resources, as well as specifically seeking information and support from other PHA. Health information exchange and emotional support are closely linked in this context. (50-54)
I'm a people person so I like to interact with people and find out all information and knowledge from other people so I would go to like a doctor or the nurse to find out specific AIDS-related information.
- PHA (51)
When you collect the information then you can pick out the similarities ...then you compare to yours. Like recently I didn't know that bed night sweats was a side-effects [sic] until I asked a friend. So I think it's always good to consult other people.
- PHA (51)
4.5.2 Community Involvement
"Social engagement in the community builds trust, efficacy, and a sense of belonging that is associated with improved mental and immunological health." (1) Involvement in community activism has been identified as an important source of strength for many PHA living in Canada. (31;39;44;55) Sharing stories and contributing to community HIV prevention efforts can help PHA derive a sense of purpose from their condition, enhance social connectedness and contribute to improved quality of life.
I do as much as I can almost on a monthly basis. I guess it's not for everybody. But I have a lot of good friends in the HIV community. Generally, being on committees and working with the HIV community helps me a lot; it helps me to build a better life for myself.
- APHA (39)
In a study of 23 women living with HIV, those who were identified as active participants in their communities described their children, involvement in support networks and possessing strong self-identity, as sources of strength and resilience. (31)
4.5.3 Social Support and Health Outcomes
Access to social support may have an impact on clinical outcomes of treatment for PHA. A study assessing the association between social support and virological outcomes of 34 Toronto-based PHA who were on treatment over a period of four years, found social support to be a determining factor in treatment outcomes. (56) PHA in this study displayed better clinical outcomes if they identified having emotional, interpersonal, and information support available to them.
Uptake of community-based social support services may depend on the demographic characteristics and behaviour patterns of PHA. A recent study found that the most vulnerable PHA (those who were single, lived alone, and reported poor health) were the most frequent users of community-based services. (57)
4.6 Physical Environments
The physical environment a person inhabits is the setting for many social determinants of health and is understood to influence physical and mental health outcomes. Physical environments may impact the accessibility of health services and ability to perform the activities of daily life. Community design and safety, access to adequate housing, safe water, education, transportation, childcare, and adaptive devices are key factors in creating healthy physical environments. (1) The majority of recent research on the physical environments of PHA in Canada focuses on how place of residence can affect the accessibility and quality of health and HIV services they receive. The topic of housing and homelessness among PHA has also been the focus of recent research.
4.6.1 The Influence of Location on PHA
Location of residence can influence the health outcomes of PHA directly by facilitating or inhibiting access to services, and indirectly by impacting the context of other determinants of health, including social environments.
Like other patients with complex conditions, PHA living in rural communities and on First Nations reserves have limited access to specialized care, treatment, and support for their condition. PHA in small communities may be reluctant to seek services out of fear that their confidentiality could be violated and result in stigma and discrimination. (50;58;59) The need for specialized HIV services may force PHA to leave their home communities for urban centres where the separation from their social network may lead to social isolation, loneliness, and depression. (58;59) A study in British Columbia found that areas around urban centres, particularly Vancouver, receive the highest influx of HIV-positive patients, suggesting PHA migrate to urban centres in search of specialized care, treatment, and support. (60)
PHA living in Canadian cities experience health management and access challenges as a result of where they reside. The location of a neighbourhood within a city can be associated with increased risk of death of PHA. (61) A study of 533 PHA who participated in the British Columbia Centre for Excellence in HIV/AIDS Drug Treatment Program, found that those who were living in a neighbourhood with a high concentration of injection drug use had three times the risk of death than PHA living in a neighbourhood with a high concentration of gay men, despite a higher occurrence of AIDS found in the latter. PHA living in a neighbourhood with a high concentration of injection drug use were more likely to be female, to have used injection drugs, to have a less experienced HIV physician, and to be less adherent to HIV treatment. (61)
The layout of services in urban centres can determine their accessibility for PHA who live there, which can impact the uptake of services. (61;62) Spatial analysis of the distribution of HIV services offered in Toronto found that emergency and prevention HIV services were clustered in certain city areas, while other services including emotional support services, post-test diagnosis services, medical services, and end-of-life services were more evenly distributed. (62)
To examine the effect of location on PHA from another perspective, a survey of 214 HIV health service providers of various professions examined the practices, referral patterns, and changes in HIV service delivery affecting PHA in Canada. (63) Respondents identified numerous barriers to access and delivery of HIV services; however, the results of the study did not indicate significant differences in referral patterns by community size, jurisdiction, or northern regions of practice.
4.6.2 Housing and Homelessness among PHA
Homelessness and unstable housing can negatively impact mental and physical health, creating barriers to self-care and increasing the use of emergency health services. As a result of concentrated HIV epidemics in many of Canada's urban centres, much of the recent Canadian research on housing and HIV has focused on PHA who live in and around Toronto's and Vancouver's city centres. (9;64)
A systematic review of the literature on health outcomes and housing among PHA in Canada found a positive association between increased housing stability and improved health outcomes. Positive effects were found on adherence, the use of health and social services, health status, and reduction of risk behaviours. (65) Negative health outcomes and poorer health-related quality of life has also been found to be associated with unemployment, unmanageable housing costs, the experience of housing-related discrimination, and depression. (9)
An analysis of a cohort of 602 PHA living in Ontario found that the location of PHA can impact access to safe and affordable housing. (9) This study found that living in the Greater Toronto Area and higher social support was associated with better physical health-related quality of life. PHA who were connected to their community, had strong social support networks, and felt comfortable with their place of residence, were found to have high mental health-related quality of life. However, PHA who experienced difficulty managing housing costs, feared eviction, and engaged in harmful use of alcohol and drugs, were found to have lower mental health-related quality of life. (9)
Vancouver's Downtown Eastside (DTES) neighbourhood has been the subject of much recent research on housing and HIV in Canada due to its high prevalence of PHA, commercial sex work, and injection drug use, as well as the lower socio-economic status of those who reside there. PHA in this neighbourhood were found to rely on single occupancy hotels at 1.5 times the rate of people without HIV. (66) For people whose housing status is unstable, adherence to medications is challenging. Despite the negative perceptions of the DTES, it should noted that for some people the neighbourhood is their home, and a place where they feel comfortable and accepted. (67)
So I hit downtown - skid row, right? And the whole thing got happy for me. There was people like me, you know; I fit into the world for the first time in my life. I wasn't an outcast, or the antisocial one, or the criminal, or the junkie. There was nobody pointing fingers at me anymore. And so that was the turning point in my life, where I decided I would go for counselling, I would get psychiatric treatment.
- Woman living with HIV/AIDS (67)
Housing instability and homelessness have been identified as major concerns among parents living with HIV, particularly single mothers. Qualitative interviews with 50 parents living with HIV suggest that the need for affordable, safe, and stable housing for families may impact personal health practices and treatment adherence among parents living with HIV. Poor housing conditions and unsafe neighbourhoods, as well as barriers to accessing support services, were also identified as important concerns. Parents in this study also described HIV-related stigma and discrimination and racism toward them. (45)
When you have kids it's hard. You have to live in a place where you feel secure and comfortable.
- Parent living with HIV/AIDS (45)
Housing is the biggest concern because you don't want to be on the streets especially with your family.
- Parent living with HIV/AIDS (45)
Parents caring for children living with HIV have identified the critical need to live close to both their place of work and their child's school in order to be immediately available in case of emergency and to protect the child's confidentiality.
I need to be there. Like I just - it makes me very uneasy...that I wouldn't be able to get to her in a very short period of time. So if she gets hurt at school, where they don't know her status, I don't want them being the ones taking her to the hospital. I don't want that. So it's very important for me to be very close by.
- Mother of a child living with HIV/AIDS (45)
4.6.3 PHA and Prison Environments
The prison environment can increase the vulnerability of PHA to poor health and social outcomes. The prevalence of HIV and other sexually transmitted and blood-borne infections (STBBIs), such as hepatitis C and hepatitis B, is disproportionately high in many Canadian prisons. (68;69) Tools, such as condoms and dental dams, which can be used to reduce the transmission of STBBIs, are available in many Canadian prisons; however, some issues still remain regarding access. A survey of inmates in federal prisons identified access issues rooted in logistics, discrimination, and confidentiality. (69) The overall impact of HIV-related stigma and discrimination, including homophobia among fellow inmates, can also render the prison environment hostile to PHA.
PHA serving sentences of more than two years are incarcerated in federal prisons, and the lengthy duration of their sentence means that it is easier to access and adhere to treatment. Those serving time in provincial and territorial prisons face more challenges in treatment access and adherence, in part due to the fact that they may only be in prison for a few days or weeks, creating logistical challenges for health care access, as they cannot bring their medications with them, and need to get a prison doctor to re-prescribe them.
PHA who are incarcerated face unique challenges in personal health management and access to HIV treatment and services. For PHA who use injection drugs, recent incarceration was found to be associated with discontinuing treatment for non-clinical reasons. (70) In a study of 12 PHA who were recently incarcerated in British Columbia, participants described multiple barriers to HIV treatment and related services. Entry into prison resulted in difficulties accessing HIV medications and treatment interruptions for PHA. Some participants said they were unable to access treatment altogether while incarcerated, and were obliged to wait until they were released to reinitiate treatment. Participants perceived the quality of care within the institution to be lower than HIV services offered in their communities. (70)
I was sentenced to a month and I only did 21 days. And in those 21 days, they did not even hand me medicine until the morning I was leaving. I was choked [enraged]. The nurse said the [institutional] doctor couldn't get a hold of my doctor. They couldn't find my doctor's number - come on, everyone has computers.
- PHA (70)
Culture and tradition can play both positive and negative roles in determining the health and well-being of people and communities. (1) To date, research on HIV/AIDS and culture in Canada has tended to focus on assessing cultural factors that contribute to HIV vulnerability and risk. Less research has examined the ways in which cultural beliefs and practices impact the lives of PHA in positive ways. The following section reviews the available literature on culture and PHA in Canada, which has focused to date on the Aboriginal and the Black, African and Caribbean communities.
4.7.1 Culture and Social Vulnerability among PHA
For many PHA, HIV is only one factor in lives complicated by multiple social burdens and racial discrimination. (42;44;71) Black Canadians identified intergenerational conflict, problems faced by Black youth in the school system, unemployment, racism, and immigration issues as frequently taking priority over treatment and care of PHA. (42) APHA have also described layers of stigma, as well as issues related to intergenerational trauma and the residential school legacy, domestic and sexual violence, poverty, addictions, and family responsibilities, as taking precedence over their personal health. (44;59;71)
I think the Black community feels it's under siege. And if you don't have to deal with [HIV] then why?
- Woman from Trinidad living in Canada (42)
I've been to clinics when I've had an injury - whether it was due to drinking or not even drinking - that I think I felt a prejudice where they just kind of came in and took a glance and [said], "Oh, yeah, you did something stupid when you were drunk. And it doesn't really matter because you're just an Indian, and you're probably going to just go get drunk and do it again.
- APHA (59)
Stigma and discrimination of PHA is known to be a serious concern for many Aboriginal communities, as well as among Black, African and Caribbean communities in Canada. (42;59;71)
[The nurse] made a very sarcastic statement. She said she always tells her daughters that everybody from Africa is HIV-positive.
- Woman from Kenya living in Canada (42)
PHA from minority groups may experience stigma and discrimination both from the wider population based on their cultural or racial background, and from within their own community based on their HIV status. (42;44;59;71-73) Cultural, community, racial, and religious affiliations may be sources of stigma and discrimination against PHA. This stigma and discrimination is partly rooted in cultural traditions and practices that discriminate against gay people, people who have sex outside of marriage, people who have multiple sexual partners, people who use drugs, and people who are living with infectious diseases. (32;42) Some cultural practices or beliefs have been shown to generate stigma and discrimination against PHA, and may result in community rejection and exclusion, barriers in access to health services, and depression. (42;59;73) Some communities may hold prejudices against PHA that can lead to ridicule, social isolation, and community and family rejection.
Some faith-based communities and religious groups believe HIV and associated at-risk populations - gay men and people who use injection drugs - are sinful and immoral, and may see HIV infection as divine punishment for committing sinful acts. Conversely, people may hold the belief that those who are following their religion cannot have HIV. (42;74)
Back in Kenya, you find every Sunday everyone is in church, and your parents are church-going people. So when you're in the church you raise your children very well and they're not supposed to get into trouble.
- Woman from Kenya living in Canada (42)
A study of 30 PHA from African and Caribbean communities in Toronto, as well as 74 women and men from these communities whose HIV status was unknown, found a range of factors leading to social isolation and barriers to treatment. (42) PHA in this study described fears of community gossip, ridicule, verbal harassment, and loss of friendship, which compelled them not to disclose their HIV infection, and to avoid accessing treatment and care. Cultural norms that inhibit willingness to discuss sex, sexuality, physical, or psychological health issues, were found to cause denial that HIV exists in these communities. Men living with HIV were found to avoid seeking medical care until the acute or "end stage" of the illness, which is thought to be related to cultural pressures for men to be tough and private. In addition, men in this study were found to avoid seeking HIV services out of fear of homophobia within communities and fear of being identified as gay. (42) HIV was perceived to be a "gay disease." A female participant from Jamaica highlights the logic around HIV in her community:
You associate HIV with homosexuality and coming from a Jamaican background, there are no gay people in Jamaica, right? So therefore, it follows that Jamaican people can't have HIV because there are no gays.
- Woman from Jamaica living in Canada (42)
Qualitative evidence suggests that APHA are highly stigmatized both by the general public, as well as within many Aboriginal communities in Canada. (10;31;39) In a study including 31 participants, APHA described ongoing mental health challenges associated with histories of colonization and abuse, violence in the home and community, and serious concerns regarding stigma and lack of confidentiality in their communities. (39)
4.7.2 Culture and Resiliency among PHA
Culture, religion, and spirituality play a critical role in resiliency against HIV for many cultural communities living in Canada. Research on culture and resiliency among PHA has to date, focused on Aboriginal peoples and communities impacted by HIV. Less is known about the positive influences of culture on resiliency for PHA of other cultural groups.
Everything from healing circles to the meetings for alcoholics and narcotics, to the healing circles done for people living with HIV and AIDS at (ASO) to these conferences. This is what I consider my health services, 'cause they're with my vitality, my longevity [sic], and my healing you know. I don't need that healing in a f--king bottle. I need a healing in my heart and my soul, you know. Church, that's my health services. A sweat lodge, that's my health services!
- Woman living with HIV/AIDS (44)
I think my biggest strength comes from...connecting with the Creator, God; and that's where my strength comes from. And I can look back now on my life and I can see all these red flags that I didn't see. It was like my eyes opened when I connected with my Creator and it was like he opened my eyes and I could suddenly see that he was the one that brought me through all those places safely.
- Aboriginal woman living with HIV/AIDS (44)
APHA who participated in various qualitative studies have described using Aboriginal healing practices in their personal HIV care, such as sweat lodges, church, smudging, seeking advice from elders, art, and traditional crafts. (44;73;75) Many participants describe using both Western and traditional Aboriginal medicines and healing ceremonies to treat their illness. (44;75) It should be noted, however, that some APHA study participants have reported that they do not make use of cultural practices in their health management. (59) Community-based interventions fostering reconnection with culture have been shown to encourage resilience among Aboriginal youth PHA. (76)
Researchers examining the responses of Aboriginal culture and Black, African and Caribbean cultures to HIV in Canada, highlight the importance of providing culturally competent care for PHA in these communities. (42;75) Culturally competent care can include knowledgeable and sensitive staff, non-discrimination policy, confidentiality training, overcoming language barriers, or incorporating traditional cultural medicines and healing practices.
The gender roles of women and men, and boys and girls, can create vulnerability to poor health outcomes. The World Health Organization has defined gender as "what a society believes about the appropriate roles, duties, rights, responsibilities, accepted behaviours, opportunities, and status of women and men in relation to one another." (77) Furthermore, gender relations are "often unequal and hierarchical. Women generally do not have equal access to resources such as money, power, and influence, relative to men." (77) Gender is a determinant of health inextricably linked to other determinants of health, specifically culture, access to healthcare, family life, and intimate relationships.
The gender inequality of women and girls is widely accepted to be a driver of the HIV/AIDS pandemic worldwide. Women and girls living with HIV are more vulnerable to poor health and social outcomes than are men living with HIV. Globally, gender inequality is known to limit women's ability to access treatment, practise safer sex, and make prudent breastfeeding choices, as well as to increase the risk of violence against women. (77)
Women and girls living with HIV in Canada face specific challenges in social and family life, sexual and reproductive health, HIV disclosure, intimate relationships, and childrearing. The impact of gender-based violence against PHA, specifically women and girls, has also been noted in recent studies on the lived experiences of women with HIV in Ontario. (44;45) Although a few studies have examined the influence of gender norms on men living with HIV, research undertaken in this area has predominantly focused on women and girls.
In some cases, discrimination against women living with HIV is based on traditional beliefs about gender regarding women's sexuality and the social role of women as mothers. Women living with HIV feel they are perceived as "vectors" of the disease and infectious to men and babies, and may be blamed for infecting their children. (71;78)
The nurses and everything, they didn't even care, they just blurted everything out right in front of everybody else and right away they threw [in] an AIDS case: "Look at what you did to your kid," you know. "How can you live with yourself, what kind of woman are you to have kids in the first place?" "You shouldn't even have sex."
- Woman living with HIV/AIDS describing her experience in hospital after giving birth (71)
Gender norms and relationships between genders influence the public perception of men and women living with HIV. The "VIHsibilité Project" identified differences in the portrayal of men and women living with HIV in the media. This project examined newspaper coverage of HIV/AIDS in Quebec from 1988 to 2004. (79) The findings showed that women living with HIV were presented in the media as "innocent victims" and "mothers" in need of greater access to care, treatment, and support, while the coverage of men living with HIV centred on heroin use, homosexuality, criminal or negligent behaviours, and being of Haitian origin.
4.8.1 Gender-Based Violence
Women and girls living with HIV are at heightened risk of sexual and gender-based violence globally. (77) Fear of violence has been identified as a concern for both women and men living with HIV and AIDS. (3;44;80) Although research in Canada has not measured the prevalence of gender-based violence among men and women living with HIV, qualitative evidence shows that the issue is a major concern for women. (44;74)
Studies examining the experiences of women and girls involved in street-level sex work in the DTES - a population of heightened HIV prevalence - demonstrate that women in this population experience multiple forms of sexual and drug-related vulnerability, and struggle with multiple morbidities, unstable housing, and addictions. (3;5) Gender-based violence has also been demonstrated to have a negative impact on coping strategies, health, and quality of life of women living with HIV in Canada. (3;44;48;81;82) In particular, violence against women living with HIV in Canada has been linked to negative coping practices including alcohol and drug use, which in turn creates increased vulnerability to poor health outcomes. (3;44)
Gender-based violence against women living with HIV is known to lead to poor health outcomes by negatively affecting treatment adherence and access to care and support services. (77) Histories of sexual violence and abuse may discourage some women from accessing critical sexual and reproductive health services. (44)
4.8.2 Gender and HIV Disclosure
HIV disclosure has been identified as a serious concern for both men and women. (10) Both women and men may feel anxiety about disclosing their HIV status to their families fearing rejection and abandonment. (48)
Women living with HIV may have concerns about disclosure due to fear of partner violence, fear of the impact on family life, and the perceived risk of losing access to their children. (44;48) Anxiety and fears about disclosure can lead women to hide their HIV infection from family, friends, and society and can prevent them from accessing social support networks. (48) Fears regarding disclosure contribute to stress in romantic and family life, specifically the desire to be honest, as well as to protect loved ones from stigma and harm. These gender-related fears place additional burden on women living with HIV, particularly women who are involved in violent relationships.
We haven't spoken openly about it. And I didn't want to scare them off when I knew about my status because the children - I didn't know how they may have taken it. So I thought there may have been stigma in the house - not sharing the same cups, the toilet and everything. So I didn't talk about it.
- Woman living with HIV/AIDS (48)
You know, I was scared. I was scared to tell them [my family]. Not knowing how'd they react; [feeling like] I'm going to lose my family over this.
- Woman living with HIV/AIDS (48)
4.8.3 Gender and Culture
Gender norms and the relations between men and women vary between and within cultures and can have a significant impact on the health of the people in these communities. (77) Certain cultural beliefs regarding gender may contribute to the health and social vulnerability of women living with HIV in Canada.
In a study of 26 Ontario women of African and Caribbean descent living with HIV/AIDS, participants noted sexist practices, embedded in cultural tradition that regulate women's role within marriages and families as contributing to the silence regarding HIV. (32) Another study on women PHA of African and Caribbean descent in Toronto, as well as providers engaged in HIV service provision among this population, suggests that cultural traditions and gender norms support a patriarchal family environment, in which women may have limited control over matters of sexuality.
[It] is not acceptable to even hint that you do not trust your partner. When we look at that, it's part of the way that women are brought up; and part of that is sex, the issue of trust, you're not even supposed to bring it up.
- Kenyan woman living with HIV/AIDS (74)
Women living with HIV reported that the fear of being ostracized and isolated as a result of their HIV infection contributed to denial, silence, and secrecy. Perceptions of stigma among this community may deter women from accessing critical health services and isolate them from seeking valuable social support networks. (74)
I am a professional Guyanese woman coming from a Muslim [sic] very traditional family who is well known within my community...but I still would not go to a female doctor within my community because the likelihood that she knows my family still prevents me from going to her.
- Guyanese woman living with HIV/AIDS (74)
Muslim woman, she's allowed to touch only her husband. So they [will] say, "You are Muslim, how come you get this disease?" They might make fun of you.
- Somali woman living with HIV/AIDS (42)
Men living with HIV of Caribbean and African descent may experience specific challenges as a result of entrenched homophobia in cultural values. A large study of Caribbean and African communities in Toronto found that gay people are often highly stigmatized in these communities, which leads to secrecy and reproachfulness. (42) Homophobia may have the impact of restricting men in these communities from accessing care, treatment, and support.
A few studies have examined the gender-specific challenges of living with HIV for Aboriginal women. (44;71;72) Perceptions of stigma and experiences of discrimination in this population are compounded by discrimination against Aboriginal women and girls. Imagery and stereotypes of sexualized and promiscuous Aboriginal women may lead to HIV- and gender-specific discrimination against Aboriginal women living with HIV.
I get calls, um ...people call me a "squaw who has AIDS" and, you, you know, you probably deserve it because squaws deserve dying, you know, "Since we can't kill you all off, you might as well die of AIDS."
- Aboriginal woman living with HIV/AIDS (71)
4.9 Access to Health Services
The accessibility of health services is a fundamental determinant of health; access to publicly funded health care is a guarantee under the Canada Health Act. Unfortunately, social and economic inequalities prevent equal access to health services among Canadians. Many people face barriers to health care services, including physical inaccessibility and social isolation, socio-cultural issues, language barriers, gender-based barriers, and the costs of health care not publicly provided. (1) Although most treatment costs of PHA are publicly funded, and many advances have been made in improving the availability and quality of HIV treatment and services, many PHA in Canada continue to face multiple barriers to accessing critical HIV services and supports. (12)
PHA look to their doctors for not only medical and clinical expertise, but also for legal and statutory expertise - knowledge of how to access services such as disability benefits and subsidized housing - and ethical or moral expertise. (83) In addition to health services, many PHA access a wide range of social services including community-based organizations, peer support, counselling services, educational support, financial support, housing support, food banks, and recreational programming. (41)
Policies and programs encouraging testing, early detection and access to care, treatment and support have improved over time. Despite these important achievements, many PHA continue to be diagnosed in later stages of their illness. (84) A recent study sought to assess the immune status of patients at first presentation for HIV services in 13 Canadian and American cohorts, totalling 44,491 PHA participants. The median age of initial presentation for HIV care was found to have increased over time. Though CD4 count at initial presentation has increased over the past 11 years, many PHA continue to first access testing below 350 cells/mm3. (84) In other words, many patients continue to be tested in later stages of their infection, which suggests a pressing need to increase access to HIV testing, early diagnosis, and access to treatment.
These delays in accessing testing and treatment also occur in HIV-related conditions. Despite high rates of abnormal cervical cancer screenings among women living with HIV, uptake of screening among this population remains low. (85)
4.9.1 Barriers in Access to HIV Health Services for PHA
Perceptions of stigma and discrimination can impact PHA access to health services and support. PHA may perceive stigma or negative judgements in some healthcare settings, which can lead to avoidance of services. (51;83)
Policies at the organizational level of health service delivery can add to perceptions of HIV-related stigma. In a study of PHA's perceptions of health care services, some expressed preference for specialized HIV services, while others felt treating PHA differently through targeted services contributed to further stigma and discrimination. (40)
Having our building identified [as an ASO] is appalling to me. I don't think that we need to put "HIV" up at the front of our building. People need to be able to come in and out of here without that stigma being attached to them.
- PHA (40)
Perceptions of stigma can act as a deterrent in access to critical health services and supports. PHA may avoid accessing services out of fear of being identified as HIV-positive to others. Systematic practices in healthcare settings, including universal precautions (such as use of gloves and a mask) may be perceived as a form of stigma by PHA and in turn lead to avoidance of HIV services. (39) The perceived need to disclose HIV status to healthcare workers, combined with the need to keep HIV status secret, was also highlighted as a potential barrier to health service access. (39)
She [receptionist] wants to know why you want to see the doctor. There's a room full of junkies and people behind me, no partition in between us, and she wants to know or wants me to explain to her why I'm there to see the doctor. I don't see what business it is of hers. If I want to see my doctor, that's my right.
- PHA (39)
Participants highlighted the paramount importance of protecting client confidentiality in service centres with open physical layouts where other patients are present. Strategies that reduced stigma for PHA included offering confidential HIV services at the same time as non-HIV services, as well as measures to avoid HIV disclosure to healthcare providers. (39)
The doctor said, "You don't have to go and tell them you've got HIV now, because they already know you have hep C. They'll take the same precautions as...they do for HIV."
- PHA (39)
We were always infectious disease, but there were certain days just HIV. So what we try to do now is put other patients in, so we have different clientele in the waiting room.
- Healthcare provider (39)
An interesting model in countering some of these barriers was developed in a Hamilton study where seven PHA acted as resource tutors in sessions with groups of physiotherapy and occupational therapy students and family medicine residents. The resource tutors provided their perspectives on issues related to living with HIV, treatment issues, culture, socio-economic status, and their past experiences with health professionals. The students identified that this experience served to give them a better, more personal understanding of PHA and challenged some of their attitudes and assumptions about HIV. There were clear benefits for the PHA resource tutors as well, with participants identifying a positive impact on their teaching skills, self-awareness, understanding of HIV, confidence in teaching, and everyday life. (55)
4.9.2 Access to Health Services among Specific PHA Populations
Stigma and discrimination against people who use injection drugs contributes to barriers in accessing health and social services among this population. (86) Increasing recognition of the benefits of comprehensive HIV treatment and care models prompted research on the potential value of integrated supervised injection and HIV care sites. (87) A qualitative study involving interviews with 22 PHA who use injection drugs, and their health care providers, examined the impact of a supervised injection program offered through the Dr. Peter Centre, an HIV care facility in Vancouver. The results of this study revealed that integrated HIV service programs can positively influence access to care by fostering trusting client/provider relationships, improving access to treatment for injection-related infections, and improving PHA engagement and knowledge of safe injection practices. (87)
There is limited HIV treatment access and utilization among street level sex workers in Vancouver's DTES. Data, collected through a baseline needs assessment of 159 people accessing a service centre for street level sex workers, showed that despite the high accessibility and utilization of services in the area, HIV-specific services received limited uptake. Although 34 participants (23%) reported living with HIV, only 14 (9%) were accessing treatment. Self-reported measurements indicated that barriers to treatment access were largely attributable to misinformation and misconceptions about treatment. Barriers cited to accessing treatment included inadequate knowledge, fear of side effects, difficulty in maintaining daily medication regimes and making regular appointments, and fear of revealing HIV infection to others. (5)
Some studies have found that APHA are less likely to see their doctors than non-Aboriginal PHA and less likely to initiate antiretroviral therapy. A study in British Columbia found that APHA were also more likely to die of AIDS than non-Aboriginal PHA. (88) Barriers in accessing health care for APHA include the experience or perception of racism and discrimination from service providers and lack of culturally appropriate health care services. For APHA living in small or remote communities, fear of their HIV-positive status being disclosed, and lack of specialized HIV care are also barriers. (2) Research in Black communities also identifies barriers such as discrimination, a lack of cultural understanding and culturally appropriate information, and linguistic and cultural barriers. (6)
In a study of 34 youth living with HIV, most were users of youth health or social services organizations and were generally satisfied with these services. Several found that AIDS service organizations were not "youth-friendly" and expressed a desire for more youth-tailored services. (41) A study that looked at youth living with HIV and the Internet found that although youth had high rates of Internet usage, they used it primarily for communication and entertainment. Although health information seeking was rare, participants expressed support for the idea of website designed for, and by, HIV-positive youth. (89)
As discussed in Chapter 3, there are increasing numbers of older adults living with HIV in Canada. As the majority of HIV services are perceived as being targeted to the needs of younger adults living with HIV, concern has been expressed over potential service barriers for older PHA. However, a study examining the ability of older adult PHA to access health and social services suggests that for these older adults, their positive and proactive attitudes and knowledge of the disease facilitated their access to services. (90) This study found that older adult PHA access a range of social and emotional supports, as well as HIV service organizations, similar to younger PHA.
4.9.3 Frontline Service Organizations and Peer Networks
Many PHA and people at risk of HIV infection access health information and support from community-based AIDS service organizations and frontline service organizations, in addition to, or instead of health services, although, as noted earlier, some PHA may be reluctant to use them. Community-based AIDS service organizations play an important role in providing support to the most vulnerable PHA. A study of 297 PHA in Ontario suggests that these organizations are being accessed by those who need them most. The study found that those who accessed community-based AIDS service organizations were significantly less healthy and reported physical disabilities and depression more often than those who did not use them. They were also poorer and used more non-hospital health and social services. (91) These organizations are seen to be non-judgemental, and to understand the specific needs and realities of the communities they serve. PHA often play a key role in these organizations, delivering counselling and support services.
Despite this important role, frontline service providers face challenges in delivering this support to vulnerable PHA. A qualitative study of 59 frontline service providers in Ontario found a consensus that funding and administrative constraints can prevent service providers from meeting the needs of their clients. (92) Providers described playing a "gate keeper" role between PHA clients and government funding. Service providers felt that their role has increasingly become a matter of rationing and limiting access to resources and not about providing non-judgemental support for PHA.
Peer-driven HIV intervention models, which involve PHA educating other PHA, have recently demonstrated potential to improve treatment uptake and adherence among marginalized PHA. (48;93) A study of treatment adherence among 20 female sex workers living with HIV in Vancouver found that participating in meetings increased self-esteem, moral and social support, decreased boredom, decreased involvement in survival sex work, and decreased time spent on the street and using drugs. Participants also attributed increased stability in treatment adherence and improved viral load outcomes to participation in meetings. (94) Other anecdotal evidence confirms the value of peer support in health management among PHA in Canada. (48;93)
I wasn't even thinking about hope; that was until I got to learn about people and not so much the disease, then I started looking at hope and it was like wow, you've had it for 25 years and you look so good. You can't read that from a book and get the same reaction so it was really cool.
- PHA (93)
For many PHA, HIV is now a chronic, episodic condition, meaning that rehabilitation services have an important and ongoing role to play in maintaining function. Rehabilitation in the HIV context can be defined as "a dynamic process that includes all prevention and/or treatment activities and/or services that address body impairments, activity limitations, and social participation restrictions for an individual." (95) Rehabilitation takes a holistic view of treatment, one which is both goal oriented and client centred, where PHA control the direction of care. (27)
Rehab means living the best that you can at this point in time throughout the prognosis.
- PHA (95)
There are multiple life domains where rehabilitation can help in maintaining or improving function for PHA - physical (i.e., pain management and muscle weakness), functional (i.e., energy conservation, modification of the activities of daily living), psychological (i.e., spiritual and personal growth, cognitive skills), community participation (social and vocational, e.g., workplace modification and skills training). (31;48;95) Thus, there are numerous professional service providers in the rehabilitation process, including both traditional rehabilitation professions, such as occupational and physiotherapy, in addition to related professions, such as social work, psychology, and nutrition.
Barriers to accessing rehabilitation services by PHA include financial ones. There is limited public funding for many rehabilitation services, for example, and this may limit the access of those who do not have supplemental insurance coverage. Service issues related to the nature of the populations served, including stigma, discrimination, cultural contexts, and personal circumstances, may mean that PHA have difficulty in fully accessing rehabilitation services. A further barrier is that PHA may not be well informed about the availability of rehabilitation services, and thus may not realize that some of their conditions could be ameliorated through the provision of specific rehabilitation services. (63;95)
Recent research has demonstrated that there is a gap between the rehabilitation needs of PHA and the services that are presently being accessed. In a survey of 214 Canadian HIV healthcare providers who may refer PHA for rehabilitation services, it was determined that PHA, when referred, were only being directed to a limited range of rehabilitation services. The majority of the referrals were to social work and HIV/AIDS service organizations and only a limited number were to traditional rehabilitation professionals, such as physiotherapists or occupational therapists for physical impairments or activity limitations. (63) In addition, a 2008 survey of 1,058 rehabilitation services providers found that while the majority were willing to work with PHA, only 39% had actually provided services to PHA in the past year. (96)
4.10 Personal Health Practices
Personal health choices, behaviours (such as exercise, diet, smoking, and drug use), and coping skills impact overall health. The personal health practices of individuals may be shaped by the social and economic environments in which they live, work, learn, and interact. (1) Exercise and nutrition among PHA, as part of a healthy lifestyle, is discussed in Chapter 3 of this report. Research on the personal health practices of PHA in Canada addresses issues of health behaviours and coping mechanisms, mental health, and quality of life.
Managing HIV care involves a lot of effort by PHA - finding the right doctor and other supports; finding health information and sharing it with friends, family, and professionals; learning about, and adhering to, antiretroviral medications; and following a healthy diet and exercise regime. (54)
4.10.1 Coping Skills and Strategies
The strength of coping skills and strategies has been shown to determine health outcomes and health-related quality of life among PHA. (93;97;98) Conversely, potentially harmful coping strategies, such as drug and alcohol use, are known to negatively impact health and quality of life. (59;97) APHA who use drugs and alcohol have described addictions as coping mechanisms for dealing with past traumas and histories of abuse, as well as diagnosis and life with HIV. (39;59;99) As discussed in Chapter 3, PHA experience elevated rates of mental health issues, which can negatively influence their personal health practices and coping mechanisms.
Smoking prevalence is around three times higher among PHA than the general population. (100) A recent study of 97 PHA examined the impact of physical activity and smoking on quality of life measurements among PHA. Well-paced physical activity that accommodates the level and tolerance of PHA was associated with reduced pain among PHA with chronic pain and with improved mental quality of life. The same study found that smoking by PHA was associated with poorer mental quality of life and coping skills. (97) This research further found that an active problem-solving or task-oriented approach to stressors was associated with improved quality of life among PHA. Conversely, an emotionally oriented approach to stressors was associated with reduced quality of life. (97)
In a study looking at PHA who use injection drugs, personal health choices were found to play an important role in treatment adherence, influencing decisions to fill prescriptions, acquire the necessary foods, and take medications consistently and on time. (101)
4.10.2 Resiliency in PHA Personal Health Practices
Research in Canada has recently begun to document and analyze sources of resiliency - such as community engagement, faith and spirituality, social networks, and family. (102) PHA in Canada of diverse backgrounds are employing active coping strategies and improving their health and quality of life. (48;59;103) Many PHA find that living with HIV makes them realize how precious their lives are.
To be able to overcome [facing death] and realize I can make the quality of my life better...that's what has encouraged me is that I can make a difference. I can improve my quality of life through my attitude, through my behaviour.
- PHA (48)
In a 2008 survey of 381 PHA, both negative and positive experiences resulting from living with HIV were reported. Among the positive experiences, 75% reported that they had re-assessed their values, 47% that their spirituality had been enhanced, 44% reported that their physical condition has improved due to more frequent exercise, and 32% had an improved relationship with their family. (38)
Faith and spirituality have been identified as an important source of support for coping with illness for PHA. (10;32;39;44;48;73;93;102;104) PHA have reported that religion and spirituality have provided them with a sense of hope that things would be okay for them and their families. (104;104) Spirituality can also be an important tool in dealing with caring for and loss of loved ones. (102)
If I hadn't had my church I wouldn't have made it through that really bad time; when I was really, really sick they kept me here. That and my family, between the two, definitely was my anchor.
- PHA (39)
HIV activism has found a strong expression in art from the beginning of the epidemic in North America. Arts-based approaches to health and healing provide an avenue for learning and acquiring positive coping techniques. (104;105) The practice of body mapping involves illustrating personal, social, geographical, political, and emotional experiences of living with HIV on a life-size human body image. (105)
The Names Project, or AIDS quilt - a quilt made up of many small personal quilts memorializing the names of many PHA that was first assembled in 1989 - was discussed in a study on PHA understandings of hope. (104) The quilt was found to remind PHA that there is hope in their illness and that HIV is not necessarily a death sentence.
[The quilt] makes you realize another 20 years [is possible]. You could live the next twenty to thirty years. People look at that [living quilt] and they see that you don't die after two weeks, six months or whatever. You could live forever. Or a lot longer than you think.
- PHA (104)
As discussed in the section on social networks, many PHA have found involvement in community HIV activism and support to be an important source of encouragement, helping them cope with their illness. Involvement in community activism was described by PHA as offering a sense of purpose and hope in that their contributions led to making a difference in preventing new infections and further suffering. (104) PHA who have become HIV educators have described the experience as improving their self-awareness, personal understanding of HIV, and confidence in teaching and everyday life. (55) Women living with HIV have described community involvement as offering a sense of purpose and inspiration. (48) Youth have demonstrated that involvement in community HIV activism can contribute to positive living with HIV. (106)
I've got more confidence in myself. I realize I have lots to offer.
- PHA (55)
You always carry things, you can't leave anything from behind and who you are today is because of what was there yesterday...I've grown a lot. I've learned a lot. I think that that positive attitude has been the one that got me through and given me the courage to do the things that I needed to do and wanted to do.
- Woman living with HIV/AIDS (48)
Community engagement is a source of resilience for many PHA, helping them face many challenges related to the determinants of health.
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