Research With a Purpose - Synthesis Papers by AIDS Committee of Toronto (ACT)

Research With a Purpose Synthesis Papers: Mental Health, Stigma, and HIV across the Lifespan

Winston Husbands Jessica Cattaneo Lydia Makoroka Rui Pires Jocelyn Watchorn Jessica Whitbread Winston Husbands Jessica Cattaneo Lydia Makoroka Rui Pires Jocelyn Watchorn Jessica Whitbread May 2012 May 2012

Acknowledgements This report was produced as part of a project titled “Research with a Purpose”. A team from the AIDS Committee of Toronto implemented the project, and produced the following reports:     



HIV Across the Lifespan: Synthesis Paper HIV and Mental Health: Synthesis Paper HIV-related Stigma: Synthesis Paper Mental Health, Stigma, and HIV Across the Lifespan: An Environmental Scan of HIV Programs and Services Research with a Purpose Interpretations: Stigma, Mental Health and HIV Across the Lifespan

Stakeholder Report: Stigma, Mental Health, HIV Across the Lifespan

“Research with a Purpose” was funded through a Meeting, Planning and Dissemination (MPD) grant (MPL-109600) from the Canadian Institutes of Health Research. The Ontario HIV Treatment Network supported Winston Husbands with a Community Scholar Award. Special thanks to the participants in our bulletin board focus groups, and the researchers, community members and service providers who reviewed the synthesis papers. The project team is responsible for the content of all “Research with a Purpose” reports.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Abbreviations ACT: AIDS: ASO: CBT: COD: HAART HIV: IDU: MSM: PHA: PTSD: SMI: SSRIs: TCA: UAI: YMSM:

AIDS Committee of Toronto Acquired Immune Deficiency Syndrome AIDS service organization Cognitive Behavioural Therapy Co-occurring disorder Highly Active Anti-Retroviral Therapy Human Immunodeficiency Virus Intravenous Drug User Men who have sex with men People living with HIV/AIDS Post Traumatic Stress Disorder Severe mental illness Selective Serotonin Uptake Inhibitors Tricyclic antidepressants Unprotected anal intercourse Young men who have sex with men

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Table of Contents ACKNOWLEDGEMENTS ............................................................................................... 1 ABBREVIATIONS ........................................................................................................... 2 RATIONALE FOR SYNTHESIS PAPERS ...................................................................... 4 INTERPRETATION: HIV-RELATED STIGMA ................................................................ 9 SYNTHESIS PAPER: HIV-RELATED STIGMA ............................................................ 11 INTRODUCTION ............................................................................................................. 11 STIGMA AND W ELL-BEING .............................................................................................. 13 INTERVENTIONS TO REDUCE STIGMA .............................................................................. 16 RECOMMENDATIONS AND DIRECTIONS FOR ACT ............................................................. 20 REFERENCES: HIV-RELATED STIGMA ............................................................................. 24 INTERPRETATION: MENTAL HEALTH...................................................................... 28 SYNTHESIS PAPER: HIV AND MENTAL HEALTH ..................................................... 29 INTRODUCTION ............................................................................................................. 29 MENTAL HEALTH ISSUES FOR PEOPLE LIVING WITH HIV .................................................... 31 MENTAL HEALTH AND VULNERABILITY TO HIV .................................................................. 35 WOMEN, HIV AND MENTAL HEALTH................................................................................. 36 LIMITATIONS ................................................................................................................. 36 INTERVENTIONS TO IMPROVE MENTAL HEALTH ................................................................. 37 RECOMMENDATIONS AND DIRECTIONS FOR ACT ............................................................. 41 REFERENCES: HIV AND MENTAL HEALTH ....................................................................... 46 INTERPRETATION: HIV ACROSS THE LIFESPAN .................................................... 50 SYNTHESIS PAPER: HIV ACROSS THE LIFESPAN .................................................. 52 INTRODUCTION ............................................................................................................. 52 CHILDREN, ADOLESCENTS AND YOUTH ........................................................................... 54 AGING AND OLDER ADULTS ........................................................................................... 58 RECOMMENDATIONS AND DIRECTIONS FOR ACT ............................................................. 61 REFERENCES: HIV ACROSS THE LIFESPAN ..................................................................... 65

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Rationale for Synthesis Papers In January 2011, the AIDS Committee of Toronto (ACT) initiated a process to build the agency’s capacity for program development related to its health promotion priorities – stigma, mental health and HIV across the lifespan. A team of research and program staff developed synthesis papers on each of the three health promotion priorities as part of the process. The synthesis papers were designed to:    

support the culture of learning in the agency; mobilize available knowledge in the priority areas as a basis for program development; enhance the ability of staff and management to use research evidence; enhance the link between knowledge development (research, evaluation, and KTE) and program development.

Origin of the health promotion priorities Stigma, mental health and HIV across the lifespan constitute ACT’s health promotion priorities for the agency’s current Strategic Plan (2010-2015). The health promotion priorities are intended to guide and inform the direction and content of ACT’s programs and services during and beyond the current Strategic Plan. The three priorities emerged from discussions at an ACT staff retreat in April 2010. The discussions among staff were informed by the results of an extensive consultation process that included:   

a general survey of stakeholders (e.g., members, people living with/affected by HIV, donors, volunteers, etc.), separate surveys of board and staff interviews and focus groups with key stakeholders from research, service and funding organizations.

In addition, discussions among staff also benefitted from staff members’ understanding of HIV/AIDS trends and community issues gained through their ongoing program and community engagement work, and their participation in various stakeholder networks.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Our approach to developing the synthesis papers The synthesis papers are a way of packaging research evidence from various published reviews to support, guide or inform decision-making about research, programs, services or policy. Each paper synthesizes the research evidence related to HIV in the respective priority areas – stigma, mental health and HIV across the lifespan. They each include a summary of key messages emerging from the synthesis exercise, a discussion of the issue based on the available research evidence, and a limited number of proposed directions or options for addressing the issue through programs or research. The project team started its work by determining how the synthesis papers would be structured, and dividing themselves into three smaller groups to work on each of the papers. Each group searched a number of research databases for various types of reviews (i.e., systematic reviews, meta-analyses, literature reviews, etc.) published between 2001 and 2010 on their assigned priority issue. Specifically, we searched titles and abstracts using various combinations of search terms related to each of the three health promotion priorities (Table 1). We also searched the bibliographies of the documents retrieved from the database searches. After an initial round of database searches, the teams met collectively to review the preliminary results and identify new search possibilities in an iterative process.

Stigma • HIV, stigma, discrimination, intervention, scale, measure, review, systematic review, meta-analysis, people living with HIV, PHAs

HIV across the lifespan

Mental health • mental health, HIV, depression, anxiety, stress, coping, systematic review, review, people living with HIV, PHAs, quality of life, dementia, suicide, mental disorder

• HIV, people living with HIV, PHAs, lifespan, aging, children, youth, adults, older adults, adolescents, girls, boys, older men, older women, longterm survivors, lifecycle, review, prevention, services, co-morbid, concurrent

Table 1. Examples of terms used in literature searches for the synthesis papers

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Each synthesis paper was reviewed independently by two persons – a service provider or community member, and a university-based researcher – who were not formally associated with ACT and whom we considered to be knowledgeable about the subject matter. Reviewers assessed the papers for completeness, clarity, consistency, value and recommendations. The project team then revised the synthesis papers accordingly. Our synthesis papers on stigma, mental health and HIV across the lifespan includes evidence from a broad range of published reviews (including systematic reviews). Though many researchers prioritize “evidence” from systematic reviews, our approach is based on the recognition that systematic reviews do not generally evaluate some types of evidence, or evidence from some research disciplines. For example, the various types of qualitative research are not typically assessed in systematic reviews. Consequently, those disciplines with a strong tradition in non-quantitative methods of observation and analysis (such as anthropology) do not generally feature in systematic reviews. In short, we take a more inclusive view of “evidence” than is generally the case in health research. We have synthesized the research on each health promotion priority separately (i.e., developed three separate synthesis papers). However, we acknowledge that the priorities are neither discrete ways of understanding the societal implications of HIV, nor discrete issues impacting the health and well-being of people living with HIV. Readers of the synthesis should keep in mind (1) the intersectionality of the three health promotion priorities, (2) that this intersectionality may compound or layer the stressors that shape the experiences of individuals and communities, and (3) that HIV programs and policy should be informed by an appreciation of the intersections among the three priorities.

Limitations The research knowledge distilled and presented in our synthesis papers is based on reviews that were published in research or scientific journals. In other words, we have not included the findings from individual research studies (except for studies that had been previously discussed in the context of a review), or from research that was not available in standard research/scientific journals. This means that the synthesis papers do not bring together all relevant research on the health promotion priorities. In addition, although we searched available databases quite comprehensively, we cannot guarantee that we identified all the reviews applicable to HIV-related stigma or mental health, or HIV across the lifespan. In developing the synthesis papers, we also did not consult with “experts” in the respective fields. These limitations indicate that some of the available research knowledge may not be reflected in the synthesis papers. Synthesis

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

papers are inherently provisional. They should be updated and revised as more research knowledge becomes available, and as previously unknown sources are identified. HIV-related stigma and mental health each constitute fairly identifiable bodies of knowledge, research specialties, or program areas. However, “HIV across the lifespan” is a relatively new concept that is not yet understood as a distinguishable body of knowledge. In fact, the concept may refer to a service model, rather than a research or program domain. Therefore, the “HIV across the lifespan” synthesis discusses how HIVrelated issues emerge across the lifespan of people who are living with or affected by HIV, and how prevention, care and support programs may respond (or are responding). The “Research with a Purpose” team comprised researchers and service providers who work in a service-providing organization (i.e., ACT). Though we have tried to strike a balance between the interests of service providers and researchers, we acknowledge that we have not prioritized debates about theory that some researchers may find interesting. However, we hope that service providers, researchers, policy makers and people who are living with HIV will benefit from our syntheses of stigma, mental health and HIV across the lifespan.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Interpretation: HIV-related Stigma HIV-related stigma generally refers to negative and harmful attitudes, beliefs and behaviours directed at people who are living with, affected by, or associated with HIV and its transmission. Worldwide, people have been fearful of HIV because its origin has been somewhat uncertain, it is spread from one person to another, those who are marginalized or socially devalued tend to be more vulnerable, there is no cure, and many people experience difficulty accessing or maintaining available treatment. In addition, HIV is spread through behaviours that many people still find difficult to discuss meaningfully (e.g., sex), or consider as immoral or illicit (e.g., needle sharing among people who use drugs). Behaviours in and of themselves do not spread HIV (e.g., sexual intercourse in and of itself does not automatically result in HIV infection); however, the fact that some behaviours and population groups are socially proscribed or not meaningfully acknowledged may undermine societal support for tools and strategies to prevent HIV from spreading. Given this background, stigmatization may occur as follows:  People may be labelled and stereotyped as suspect, undeserving, undesirable or morally deficient if they: - are (or are assumed to be) living with HIV, - are associated with population groups that are most affected by HIV (e.g., gay men), - are associated with cultures or behaviours that are blamed for HIV (e.g., people who inject drugs), - have close relationships with HIV-positive people  People who are HIV-positive may be blamed for their condition (they must have been engaging in “immoral” behaviour), and may be seen as a burden on society  The stigmatized groups will experience marginalization and discrimination People who are living with HIV (PHAs) may lose their usual sources of support (i.e., family, friends, etc.). They may also internalize aspects of the stigmatizing attitudes that exist in the broader society (e.g., blame themselves for being HIV-positive, feel ashamed of their diagnosis, or feel unworthy of societal or individual efforts to offer services). These feelings may lead them to withdraw from supportive networks.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

In many parts of the world, population groups that are most affected by HIV are already devalued or marginalized because of race, gender, culture or practices that society considers to be immoral or shameful. These include gay men, people who inject drugs, sex workers, Black people and Aboriginal people. Therefore, societal attitudes and beliefs about HIV and people who are living with or affected by HIV may reproduce, reinforce or compound existing prejudices, marginalization and social inequality. Stigma may also undermine prevention and support efforts. For example, programs to address HIV may not achieve desired outcomes if members of the community are reluctant to get tested for HIV or access appropriate services because of the stigma associated with HIV. In such cases, stigma can drive the spread of HIV in the community.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Synthesis Paper: HIV-related Stigma Introduction Stigma did not emerge with HIV; neither is it peculiar to HIV. Stigma is reproduced through social interaction, and how it is expressed or how it emerges depends to some extent on social conditions or social context. For example, Blackness, as a feature of people of African descent, is stigmatized in many places. However, the specific way in which Black people may be stigmatized in the early 21st century, and the implications of that form of stigma today, are perhaps qualitatively different from how it may have been expressed (and its immediate implications for Black people) before and during slavery. Similarly, the fact that the term “prostitution” is increasingly replaced by “sex work” indicates that the stigma associated with commercial sex has changed, even though “sex work” and “sex workers” are still stigmatized. If the emergence of stigma varies over time and space, then how we understand and respond to stigma vary likewise. In the early 1960s, one influential writer suggested that stigma “refer[s] to an attribute that is deeply discrediting.”1 Nowadays, however, many observers propose that, though associated with attributes that society may construct as discrediting, stigmatization is a social process of marginalization;2 in other words, stigmatization and its effects are social justice issues. This implies that tolerance, as a response to stigmatization, must be complemented by strategies to promote equity and guarantee human rights.

HIV-related stigma HIV-related stigma generally refers to negative and harmful attitudes and beliefs directed to people who are living with, affected by, or associated with HIV and its transmission. Stigma emerges in various forms: 



perceived, felt or anticipated stigma refers to people living with HIV (a) being aware of negative attitudes about the disease and the people who are infected, and their expectations that that they will experience prejudice, discrimination and diminished social identity because of their infection.3 internalized stigma refers to “the degree to which people living with HIV endorse negative beliefs and attitudes about themselves”4 (e.g., self-blame, feeling unworthy, etc.)

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Individuals and groups also experience HIV-related stigma based on their association with people who are living with HIV, or their presumed association with cultures and behaviours that are grossly interpreted as responsible for HIV transmission. For example, those in close relationships with people living with HIV (e.g., caregivers, family members, lovers, etc.) may experience stigma by proxy. Also, people may be stigmatized based on their association with marginalized ‘risk’ groups that are already interpreted as suspect, morally deficient, or as vectors of HIV transmission (e.g., Africans or people of African descent, gay men, sex workers, and people who inject drugs). This form of stigma has been called symbolic stigma.5 People living with HIV and others affected by HIV may also experience discrimination. Research on stigma often conflates discrimination and stigma, such that many researchers understand discrimination as enacted or instrumental stigma. However, stigma refers to attitudes and beliefs (i.e., ideas), while discrimination entails actions and behaviours (i.e., practices). The practices that constitute discrimination are not separable from the ideas or beliefs that people use to justify or reinforce those practices. But stigma and discrimination are not the same even though they are reciprocally related. For example, stigmatizing attitudes and beliefs about people living with HIV may persists even when organizations have policies to prohibit or eliminate discrimination, and those stigmatizing attitudes may still surface from time to time. Institutional policies are helpful but not sufficient – policies and programs should be complemented by other approaches to help people understand why their attitudes and beliefs (i.e., ideas) are contrary to their organization’s commitment to equity and social justice. Stigma is layered with long-standing structural and systemic inequalities, such as race, class, gender and heterosexism.6 While stigma and discrimination are manifested through the everyday prejudices and actions of individuals, the effect of individual expressions of stigma is to (re)produce social inequality.7 For example, the stigma associated with HIV will be another reason for, and justify, the continued marginalization of population groups that already are excluded or marginalized. However, stigma research rarely addresses the connection between stigma and inequality, marginalization or social control. On the whole, stigma has probably contributed to the spread of HIV rather than held it back.8 In this regard, it has been noted that stigma neither diminishes nor eliminates vulnerability or susceptibility to HIV infection. In fact, stigma may have made HIV prevention more difficult by giving people a false understanding of their own vulnerability and susceptibility to HIV. Stigma is also associated with other health conditions (e.g., mental illness) in ways that are similar to how people living with HIV experience HIVrelated stigma.9 This suggests that collaboration among stakeholders across diseases AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

may be an efficient approach to understanding and responding to stigma in a comprehensive, coordinated way.10

Problems with the concept of stigma Though the various forms of stigma appear to clarify the concept, they may in fact demonstrate the complexity of stigma. For example, researchers often acknowledge the various ways in which stigma emerge, but tend to produce generalized or undifferentiated measures of stigma nonetheless.11 By failing to differentiate the forms of stigma that people experience, research may obscure how outcomes or effects of stigma are linked to its various forms. In practice, stigma is deployed in ways that suggest it is self-evident12 and lacking analytical clarity and precision.13 This conceptual fuzziness in turn contributes to the ambiguity of the standard measures14 and makes it difficult to assess the effectiveness of stigma-reducing interventions.15 Researchers have generally adopted a rather broad view of stigma, such that all negative associations with HIV can be attributed to stigma.16 This has prompted some researchers to call for better definitions of stigma, and for differentiation between stigma and discrimination. Moreover, as mentioned above, researchers have generally not interpreted stigma as a process of marginalization, which in turn limits understanding of how stigma and its impacts are produced and maintained.17

Stigma and Well-being Despite the limitations noted above, research has generally demonstrated how stigma affects people living with HIV. Perceived or anticipated stigma is associated with the reluctance or inability of people living with HIV to disclose their status, and to consciously adopt strategies that keep others unaware.18 Enacted stigma or discrimination may have similar effects, but also poses barriers to accessing care, treatment, support and information.19 Among people living with HIV, both forms of stigma (perceived/anticipated and enacted) elicit feelings of rejection that are no less real for one form of stigma than the other.20 Stigma has been assessed in relation to several aspects of individual well-being.21 It is generally believed and understood that people affected by stigma may experience a diminished quality of life, low self esteem, and reduced social participation. In addition, they may experience difficulty adhering to their treatment regimen, and may disengage from health seeking behaviours that are instrumental to maintaining good health. However, due to variety in the choice and measurement of stigma indicators and correlates, there are notable differences in research findings regarding the prevalence and correlates of stigma.22 AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

The harmful effects of stigma are not restricted to individuals, however. Stigma may undermine public health programs and interventions and jeopardize the well-being of entire communities.23 For example, if stigma causes people to delay accessing HIV testing or care, then programs and interventions to promote testing or improve the availability of care are likely to miss their targets. This suggests that, for optimal effectiveness, HIV-related programs and interventions should be complemented by initiatives to reduce stigma and create perspectives that enable communities to better understand how stigma undermines community well-being. By denying the well-being and participation of people who are living with HIV and undermining public health programs, stigma is a social justice issue that negatively affects people living with HIV as well as those who are not.24 However, the trend in research and stigma-reduction interventions has been to focus on stigma in emotional terms, as something that originates with and is perpetrated by misinformed individuals who lack ‘true’ understanding about the disease, and affecting only individuals who live with HIV or are somehow associated with HIV.25 Consequently, stigma-reduction interventions have tended to focus on (a) generating tolerance for people who live with HIV, (b) countering misinformation and misunderstanding by propagating ‘correct’ information about HIV and its transmission, or (c) finding ways for people living with HIV to adjust to stigma (through counselling, for example).26

How stigma affects people living or associated with HIV Research has demonstrated that stigma affects people living with HIV as follows: 

Perceived or anticipated stigma is associated with a decrease in the ability or willingness of people living with HIV to: o disclose HIV status, o create or implement positive coping strategies o use health care services o acquire knowledge regarding HIV o achieve self efficacy in relation to protecting others and self-care.



Discrimination (enacted stigma) affects people living with HIV through: o o o o o

diminishing their access to resources, services, entitlements and rights (health, care, support, education, employment); social exclusion; increasing the likelihood that they will distrust others; diminishing their ability or willingness to disclose their HIV status; and re-enforcing the conditions that impede treatment adherence.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

People living with HIV who internalize stigma have a greater likelihood of experiencing depression and low self-esteem, in addition to feelings of shame and guilt, self-blame, loneliness and withdrawal.27 However, internalized stigma (or the ability to withstand any form of stigma) is not a necessary consequence of living in a stigmatizing social environment – people’s ability to withstand stigma depend on their material and emotional wellbeing, and their socio-demographic status.28 Researchers have focused on the attitudes and behaviours of health care professionals and other service providers, and the impact of stigma on those who have close relations with people living with HIV (e.g., partners/spouses, mothers, other family). Regarding health care professionals and service providers, researchers have noted the potential for negative judgments, the reluctance to provide service to people living with HIV, inappropriate fear of contagion, and support for discriminatory practices.29 Spouses/lovers, parents and other family of people living with HIV may be ostracised in their community or social circle. HIV may also be associated with family tensions when family members are unable or unwilling to accommodate the circumstances and needs of a family member living with HIV, or when the family members themselves cannot cope with a loved one’s HIV diagnosis due to the negative attitudes associated with HIV.30

Stigma among the general population The most common issues identified or proposed in the research include stereotyping of those living with HIV, social distancing (i.e., varying degrees of exclusion), and collective public denial that HIV is present in the community.31 Stigma may be detrimental to the health and wellbeing of communities in the long run. Where stigmatizing attitudes, beliefs and behaviours are widespread, people in the community may attribute risk to “others”, thereby exempting themselves from HIV prevention practices. Moreover, community members may be reluctant to get tested or, if diagnosed, seek care, treatment and support in a timely manner. These conditions may severely reduce the effectiveness of HIV prevention programs. However, according to one researcher, the process of coming together to address stigma “may strengthen and homogenize a community and its values by actually or metaphorically ridding (community) of unwanted or undesirable traits.”32

Compound or layered stigma As reported earlier, research has not concretely recognized how HIV-related stigma overlaps with or reinforces systemic or structural determinants, and “stigma-modifying variables” (e.g., gender, sexual orientation, race, class, immigration, occupation, age).33

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

For example, it has been shown that, in low and middle income countries (e.g., most of the countries in Africa with a high adult prevalence of HIV), “the odds of having HIV are markedly and consistently higher” among men who have sex with men (MSM) than among the general adult population.34 This may be attributed to stigma and discrimination against gay men and same-sex relationships, which in turn makes gay men more vulnerable to HIV.35 Despite the gap in research concretely linking HIV-related stigma to the more generalized processes of marginalization, compound stigma does figure prominently in some of the most comprehensive descriptions of stigma as a process. Stigma plays a role in reproducing the social order (i.e., perpetuating the disenfranchisement of some groups, devaluing relationships of specific people, perpetuating hierarchy, and limiting access to resources).36 This process usually positions a disenfranchised group as deviant and requiring social control and/or exclusion.37 Therefore, “stigma serves to reinforce social norms by defining deviance”, such that people who become infected with HIV through “deviant” behaviours “may carry an additional stigma because of their deviant behaviour.”38 In brief, stigma is associated with symbolic or structural violence (i.e., racism, gender inequality, poverty, etc.) that establishes, reinforces or legitimizes social inequality without resorting to “direct coercion.39

Interventions to Reduce Stigma The reviews included in this synthesis paper identify several strategies for reducing stigma. These stigma reduction strategies focus on (a) generating tolerance for people living with HIV, (b) countering misinformation by circulating factual information about HIV and its transmission, or (c) finding ways for people living with HIV to adjust to stigma. Few programs or interventions however, include a rigorous evaluation or impact assessment.40 Furthermore, lack of consensus regarding both the definition of stigma, and appropriate tools for measurement make interventions difficult to assess.41 As one USAID Concept Paper explained, “underlying the apparent universality of the problem of HIV/AIDS related [stigma, discrimination and denial] there appears to be a diversity and complexity that makes it difficult to grasp in a programmatically useful way.”42 The reviews also included interventions that appeared to reduce HIV-related stigma, even if the intervention was not intended to do so. Most reviews stressed that the drivers of stigma are poorly understood. Therefore, attending to related and compounding issues (e.g., gender) is important to developing appropriate and effective interventions.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Interventions at Different Scales – Intrapersonal to Structural Stigma reduction strategies (“a plan or policy designed to achieve a particular goal”) may be grouped in terms of their scale: intrapersonal, interpersonal, organizational/institutional, community, and governmental/structural.43 Intrapersonal level strategies tend to focus on the adjustment of people living with HIV and include interventions like counselling (individual and group), self-help and advocacy groups, outreach activities, and HIV treatment. These interventions are intended to challenge internalized stigma by changing attitudes, beliefs, and behaviour. While the efficacy of these interventions has been demonstrated in relation to a number of HIVrelated outcomes, they have rarely been assessed in terms of stigma. Still, some individual studies have shown that counselling and cognitive behavioural therapy (CBT) can be effective in reducing stigma by reducing emotional distress and reinforcing positive attitudes. CBT in particular can provide individuals with a tool to “reframe the meaning of their illness in a more constructive way.” 44 Increased availability of HIV treatment was shown to increase awareness of HIV at a community level and reduce levels of perceived stigma among people living with HIV in Zambia.45 The research literature suggests that, while stigma may prevent people living with HIV from disclosing their HIV status, social support for people living with HIV may facilitate or strengthen their ability to disclose.46 Many interventions at the intrapersonal level are therefore designed to support the disclosure of one’s HIV status. A study conducted in Kenya found that patients living with HIV on ART had lower levels of internalized stigma, and were more likely to disclose their status to family members, receiving greater levels of support at home. The increase in disclosure rates was specific to the household however, and did not extend into the workplace or general community. 47 Interpersonal level strategies target those in direct contact with people living with HIV and are aimed at generating tolerance and correcting misinformation in order to reduce discrimination. Some studies show that providing support and training to family and caregivers is an important way to enhance the care people living with HIV feel, reducing the levels of stigma they experience in their social networks. One common intervention has been to provide caregivers with information regarding HIV transmission and treatment, thereby decreasing their fear about becoming HIV-positive through care giving activities.48 Interpersonal level strategies aim to modify the environment of people living with HIV and are framed as potentially community mobilizing interventions. For instance, one intervention in Zambia included the development of “anti-aids clubs”. The clubs

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

engaged local youth to provide care and support to people living with HIV and help foster acceptance within their families and communities. Initial assessments of the clubs suggest that the participating individuals living with HIV had greater levels of social support, and there was an increased acceptance of individuals living with HIV in the broader community. However, the authors stressed that a more rigorous evaluation was necessary to assess the interventionâ&#x20AC;&#x2122;s impact.49 Stigma reducing strategies at the organizational/institutional level are aimed at institutions and seek to generate tolerance for PHAs and correct misinformation about HIV. Institutional level interventions are often focused on health services, though sometimes they aim to change attitudes and organization structures of a workplace. Studies regarding the development and implementation of anti-discriminatory practices and staff training in hospitals in India and Vietnam found that a participatory process to address HIV-related stigma was successful at reducing stigmatizing attitudes in hospital staff and improving the quality of care for patients living with HIV. These interventions successfully engaged hospital staff to develop policies to address HIV-stigma in the hospital context.50 Although not a participatory process, similar success was reported about an HIV-related stigma reduction intervention among health care workers in Yunnan Province in China. By providing health care staff with clear and scientific knowledge of HIV transmission and treatment, quality of care of patients living with HIV increased.51 The operationalization of the GIPA (greater involvement of people living with HIV/AIDS) principle has also been an important stigma reducing strategy. Studies have shown that including people living with HIV in service provision can sensitize other service providers in the realities of living with HIV, reduce stigma, and improve the quality of services HIVpositive patients receive. A peer model of care has also been shown to reduce social isolation, enhance self-esteem, and improve the economic conditions of people living with HIV participating.52 Strategies at the community level often aim to reduce stigma by correcting misinformation about HIV building awareness and knowledge as well as increasing community development skills. Perhaps the most common interventions designed specifically to reduce sigma have been developed as community level campaigns intended to increase community membersâ&#x20AC;&#x2122; tolerance of people living with HIV, through education and increased visibility.53 HIV-related educational campaigns have generally been found to have a positive effect in terms of increased tolerance of people living with HIV. However, studies were mixed in terms of attitude change and fears related to myths about transmission through casual contact.54 A systematic review of the effectiveness of mass media campaigns intended to reduce HIV-related stigma revealed

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

that often they produce only a small positive impact on knowledge of HIV transmission and reduction of risk behaviour. Often, mass media campaigns have very weak evaluation structures.55 Although the impact of stigma reducing campaigns is not well established, moving from fear-based prevention campaigns to prevention messages that present individuals living with HIV positively is important.56 Two interventions that wove HIV-related messaging into popular stories have been positively reviewed. In Botswana, viewers or a popular soap opera were introduced to a two-year story line focused on HIV. Those who followed the soap opera showed significantly lower levels of HIV-related stigma compared to non-viewers.57 A Nicaraguan communication-for-social-change project included the development of a youth-centred radionovela that aimed to strengthen HIV prevention through critical discussion of gender inequality, violence, and sexuality. The series lasted two years. Researchers found that youth who followed the series regularly were less likely to hold stigmatizing attitudes and significantly increased their knowledge of HIV and HIV-related services. However, the study also found that some aspects of stigma and discrimination are easier to change than others. For instance, negative attitudes about MSM and sex workers were more resistant to change.58 Governmental/structural level strategies are aimed at ensuring the rights of individuals living with a stigmatizing illness are protected. This approach focuses on power, inequality and exclusion at a structural or societal level, including equal access to health care, housing, employment, and justice.59 Interventions at this level target particular individuals or institutions that have a broader reach, including faith based leaders, the judiciary, and the legislative arena. Although many of the reviewers stressed the necessity of structural intervention to reduce stigma, none offered a concrete example60 (though the campaign for prosecutorial guidelines in Ontario related to the criminalization of HIV non-disclosure may be one example). More recently, researchers and activists have argued for stigma-reduction interventions that are implemented from multiple levels, recognizing stigma as a â&#x20AC;&#x153;layered phenomenon fundamentally linked with and enabled by sexism, racism, homophobia, and other forms of social inequality.â&#x20AC;? 61

Stigma reduction interventions specifically for populations vulnerable to HIV Stigma reducing interventions are also important for populations vulnerable to HIV transmission and often aim to increase their access to HIV testing and prevention programming. One example is an intervention implemented in Brazil aimed at engaging truck drivers to access HIV and sexual health services, which they often avoid because of the stigma attached to these services. By offering HIV prevention, testing, and treatment as part of broad range of health outreach services, the truck drivers were15%

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

more likely to be tested for HIV. The truck drivers also reported that the outreach HIVrelated services were useful and non-stigmatizing.62 Another intervention, aimed at increasing access to HIV prevention and treatment services for MSM in Senegal, addressed barriers to accessing appropriate health care by a stigmatized population. Special teams of health care practitioners were sensitized to the needs of MSM and were trained to provide non-judgmental care. MSM who participated in the program described the services as high quality and non-judgmental.63

Recommendations and Directions for ACT General approaches or frameworks If stigmatization is related to social processes that reproduce inequality, then stigma reduction is a social justice issue. Nonetheless, as noted previously, there has been some success in ameliorating and possibly reducing stigma through interventions at the intrapersonal, interpersonal and community levels. Therefore, approaches to addressing stigma at the individual level should be complemented by programs and approaches that attempt to “transform the context within which stigma emerges”64 (i.e., promote or advocate for policies that enhance self-determination and equity). This involves research and programs that (a) promote understanding or action regarding how stigma is layered with existing processes of marginalization and social oppression (race, gender, class, heterosexism, etc.), (b) engage and mobilize people living with HIV and affected communities to address stigma, (c) engage the media, elected officials, health and social services, the education system, and community leaders to change the nature of discourses about HIV. Three approaches that embody the research and program issues outlined above are: 



implementing UNAID’s People Living with HIV Stigma Index65 (a structured national, regional or local process, led by people living with HIV, to document experiences of stigma and discrimination, and to use the data to inform advocacy and policy); working within the framework of ACCHO’s How We Can Stop HIV/AIDS Stigma in Toronto’s African and Caribbean Communities66 (recommended actions and strategies to systematically address HIV-related stigma affecting African, Caribbean and Black communities in Ontario; the actions and strategies emerged from a community-based knowledge translation and exchange process for the Stigma Study among African, Caribbean and Black communities in Toronto); adopting the approach and outcomes of the CAAT’s project to engage and mobilize faith, media and social justice leaders in stigma reduction.67

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Other recommendations for programs and research 1. There are multiple definitions of stigma in the research literature. ACT should review existing definitions of stigma and adapt or develop a definition or interpretation that is appropriate for ACT’s purposes and values. 2. The manifestations and consequences of stigma are not necessarily identical across all population groups. For example, how stigma emerges among gay men may be different from how it emerges among people who inject drugs or African, Caribbean and Black women. Therefore, ACT should undertake or advocate for research to understand how stigma emerges among the agency’s priority populations (gay men, women and youth), and tailor stigma reduction initiatives to address the particular situation of respective priority populations. 3. ACT should undertake research to understand the techniques and modalities for assessing and addressing stigma among service users through counselling, case management and support groups (i.e, best practice interventions), and incorporate stigma reduction in the agency’s ongoing support services. 4. Stigma is a form of social oppression, and ACT’s core values commit the agency to oppose oppression. ACT staff should have access to anti-oppression training on a regular basis to help them maintain their commitment, in both theory and practice, to ACT’s core values.

Goffman, 1963, p. 3 Parker and Aggleton, 2003 3 Logie and Gadalla, 2009; Earnshaw and Chaudoir, 2009; van Brakel, 2006 4 Earnshaw and Chaudoir, 2009 5 Logie and Gadalla, 2009 6 Sandelowski, 2009 7 Deacon, 2006 8 Madru, 2003 9 van Brakel, 2006 10 Campbell and Deacon, 2006 11 See van Brakel, 2006 for a list and review of stigma scales 12 Sandelowski, 2008 13 Deacon, 2006 14 Nyblade, 2006; Sandelowski, 2008 15 van Brakel, 2006 16 Sandelowski et al., 2008 17 Parker and Aggleton, 2003 18 Pulerwitz et al., 2010; Skinner and Mfecane, 2004; Mbonu et al., 2009 2

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Monjok et al., 2009; Prost et al., 2008; Nyblade, 2006 Parker and Aggleton, 2003 21 Logie and Gadalla, 2009; Earnshaw and Chaudoir, 2009; van Brakel, 2006 22 Logie and Gadalla, 2009; Sandelowski, 2008; Sandelowski, 2009 23 van Brakel, 2006 24 Taylor, 2001 25 Parker and Aggleton, 2003 26 Parker and Aggleton, 2003; Campbell and Deacon, 2006 27 Monjok et al., 2009; Skinner and Mfecane, 2004; van Brakel, 2006; Earnshaw and Chaudoir, 2009; Nyblade, 2006 28 Kaplain et al., 2005; Whetten et al., 2008; Mbonu et al., 2009 29 Monjok et al., 2009; Mbonu et al., 2009; Pickles et al., 2009; Taylor, 2001 30 Taylor, 2001; van Brakel, 2006; Skinner and Mfecane, 2004 31 Mbonu et al., 2009; Parker and Aggleton, 2003 32 Taylor, 2001 33 Mbonu et al., 2009; Earnshaw and Chaudoir, 2009; Pulerwitz et al., 2010; Nyblade, 2006 34 Baral et al., 2007 35 Baral et al., 2007 36 Parker and Aggleton, 2003 37 Kaplain et al., 2005 38 Taylor, 2001 39 Parker and Aggleton, 2003; Farmer et al., 2006 40 Mahanjan et al. 2008 41 van Brakel, 2006; Mykhalovskiy et al., 2009; Sandelowski et al. 2008 42 quoted in Parker and Aggleton, 2003 43 Heijnders and van der Meij, 2006 44 Heijnders and van der Meij, 2006 45 Pulerwitz et al., 2010 46 Smith et al., 2008 47 Pulerwitz et al., 2010 48 Heinders and van der Meik, 2006 49 Pulerwitz et al., 2010 50 Pulerwitz et al., 2010 51 Mykhalovskiy et al., 2009 52 Mykhalovskiy et al., 2009; Parker and Aggleton 2003 53 Mahajan et al., 2008 54 Heijnders and van der Meij, 2006 55 Mahanjan et al., 2008 56 Monjok et al., 2009 57 Mahanjan et al., 2008 58 Heijnders and van der Meij, 2006 59 Parker and Aggleton, 2003 60 Mahanjan et al., 2008; Parker and Aggleton 2003 20

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Mykhalovskiy et al., 2009 Pulerwitz et al., 2010 63 Pulerwitz et al., 2010 64 Parker and Aggleton, 2003 65 UNAIDS, 2008 (www.stigmaindex.org/9/aims-of-the-index/aims-of-the-index.html). 66 ACCHO (African and Caribbean Council on HIV/AIDS in Ontario), 2008 (available at www.accho.ca/?page=resources) 67 Wong et al., 2011 62

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

References: HIV-related Stigma ACCHO (African and Caribbean Council on HIV/AIDS in Ontario) (2008). How We Can Stop HIV/AIDS Stigma in Torontoâ&#x20AC;&#x2122;s African and Caribbean Communities. Toronto. Baral, S., Sifakis, F., Cleghorn, F. and Beyrer, C. (2007). Elevated risk for HIV infection among men who have sex with men in low- and middle-income countries 2000-2006: a systematic review. PLoS Medicine 4(12), 1901-1911. Campbell, C. and Deacon, H. (2006). Unravelling the contexts of stigma: from internalization to resistance to change. Journal of Community & Applied Psychology 16, 411-417. Deacon, H. (2006). Towards a sustainable theory of health-related stigma: lessons from the HIV/AIDS literature. Journal of Community & Applied Psychology 16, 418-425 Earnshaw, V. and Chaudoir, S. (2009). From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures. AIDS & Behavior 13, 1160-1177. Farmer, P., Nizeye, B., Stulac, S. and Keshavjee, S. (2006). Structural violence and clinical medicine. PLoS Medicine 3(10), 1686-1691. Goffman, E. (1963). Stigma: Notes on Management of a Spoiled Identity. New York: Simon & Schuster (1986 edition). Heijnders, M. and Van Der Meij, S. (2006). The fight against stigma: an overview of stigma-reduction strategies and interventions. Psychology, Health and Medicine 11(3), 353-363. Kaplain, A.H., Scheyett, A. and Golin, C.E. (2005). HIV and Stigma: Analysis and Research Program. Current HIV/AIDS Reports. pp 184-188. Logie, C. and Gadalla, T. (2009). Meta-analysis of health and demographic correlates of stigma towards people living with HIV. AIDS Care 21(6), 742-753. Madru, N. (2003). Stigma and HIV: Does the social response affect the natural course of the epidemic. Journal of the Association of Nurses in AIDS Care 14(5), 39-48. Mahajan A. P., Sayles, J. N., Patel, V. A., Remien, R. H., Sawires, S. R., Ortiz, D. J. (2008). Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS 22 (S57), 67-79. Mbonu, N., Van den Borne B., and De Vries N. (2009). A model for understanding the relationship between stigma and healthcare seeking behaviour among people living with HIV/AIDS in Sub-Saharan Africa. African Journal of AIDS Research 8(2), 201-212.

Monjok, E., Smesny, A. and Essien E.J. (2009). HIV/AIDS –related stigma and discrimination in Nigeria: review of research studies and future directions for prevention strategies. Journal of Reproductive Health 13(3), 21-35. Mykhalovskiy, E., Brown, G., and Kort, R. (2009). XVII International AIDS Conference. From evidence to action—social, behavioural and economic science and political science. Journal of the International AIDS Society 12(Suppl 1), S5. Nyblade, N. (2006). Measuring HIV stigma: existing knowledge and gaps. Psychology, Health & Medicine 11(3), 335-345. Parker, R. and Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Social Science & Medicine 57, 13-24. Pickles, D., King L. and Belan, I. (2009). Attitudes of nursing students towards caring for people with HIV/AIDS: thematic literature review. Journal of Advanced Nursing 65(11), 2262-2273. Pulerwitz, J., Michaelis, A. and Weiss E. (2010). Reducing HIV-related stigma: lessons learned from Horizons Research and Programs. Public Health Reports 125(2), 272-281. Sandelowski, M., Barroso, J. and Voils, C. (2009). Gender, race/ethnicity, and social class in research reports on stigma in HIV-positive women. Health Care for Women International 30, 273-288. Sandelowski, M., Voils, C., Barroso, J. and Lee, E-J. (2008). “Distorted into clarity”: a methodological case study illustrating the paradox of systematic review. Research in Nursing & Health 31, 454-465. Skinner, D. and Mfecane, S. (2004). Stigma, discrimination and the implications for people living with HIV/AIDS in South Africa. Journal of Social aspect of HIV/AIDS 1(3), 157-164. Smith, R., Rossetto K. and Peterson, B.L. (2008). A meta-analysis of disclosure of one’s HIV positive status, stigma and social support. AIDS Care 20 (10),1266-75. Taylor, B. (2001). HIV, stigma and health: integration of theoretical concepts and the lived experiences of individuals. Journal of Advanced Nursing 35(5), 792-798. UNAIDS (2008). The People Living with HIV Stigma Index: User Guide. Geneva. van Brakel, W. (2006). Measuring health-related stigma – a literature review. Psychology, Health & Medicine 11(3), 307-334.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Whetten, K., Reif, S., Whetten, R. and Murphy-McMilla L.K. (2008). Trauma, mental health, distrust, and stigma among HIV-positive persons: implications for effective care. Psychosomatic Medicine 70(5), 531-538. Wong, J., Li, A., Fung, K., Luyombya, H., Abdulghani, O., Kapac, J., Desbiens, M., Maio, A., Zhou, R. and Murray, J. (2011). Engaging ethnoracial, faith, media and social justice leaders in HIV stigma reduction: challenges and opportunities (Abstract). Canadian Journal of Infectious Diseases and Medical Microbiology 22(Suppl B), 32B

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Interpretation: Mental Health Mental health is a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, and is able to make meaningful contributions to their families and communities. Many factors such as structural inequality, self-esteem and self knowledge, physical health, relationships with family, friends and co-workers, finances, community involvement, and stress management can impact mental health. Mental health issues commonly associated with HIV include depression, trauma, substance related disorder, grief and loss, anxiety disorders, neurocognitive impairment, and coping with stress. Some mental health conditions are chronic, but for many, mental health issues emerge episodically or in response to external environments or events. For people living with HIV, mental health concerns fall under the continuum of positive prevention with emphasis on health management. For others, challenges related to mental health may increase their vulnerability to HIV. Organizations serving people living with and vulnerable to HIV should consider:    

How experiences of living with HIV (episodic illness, HIV medication, stigma, inability to work) can impact mental health Programming that can address depression, anxiety, stress management, substance use and addiction, neurocognitive impairment, and trauma Engaging people living with mental illness in HIV prevention programs and activities Engaging people living with and vulnerable to HIV in mental health promotion activities

Understanding the links between mental health and HIV is important because when experienced together, they add complexity to diagnosis, treatment and care of both.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Synthesis Paper: HIV and Mental Health Introduction Recent statistics report that 20,056 people have tested positive for HIV in Toronto since 1985. In recent years, approximately two Torontonians are diagnosed with HIV each day, though it is estimated that 975 people were newly infected in Toronto in 2008.1 There is little information regarding the prevalence of mental health disorders among people living with HIV in Toronto (or Canada). However, current estimates are that one in five Canadians will experience a mental illness.2 Understanding and addressing the intersection of mental health and HIV has been an important part of the support and treatment services for people living with HIV in Toronto. These services range from hospital-based psychiatric services to communitybased peer support initiatives. Many of the mental health support programs in AIDS service organizations (ASOs) are often couched in the broader context of case management or general HIV support work. For example, an ASO may offer a support group for individuals newly diagnosed with HIV, but this group will also explore the broader mental health concepts of anxiety, depression and coping. However, there are a number of programs in Toronto specifically designed to address the intersection of mental health and living with HIV/AIDS. These intersections are often addressed with mental health considerations in HIV medical settings, and HIV considerations in mental health programming. For instance, in settings such as an HIV/AIDS medical clinic, programs may have a multi-disciplinary team that includes social workers, psychiatrists, nurses, and physicians. While there are many mental health programs widely known and accessed in Toronto by those living with HIV/AIDS, other mental health supports are less connected to the HIV sector. An example of one such service is the Canadian Mental Health Association, which is widely known and respected for mental health programming, yet does not specifically address the intersection of mental health and HIV/AIDS. One common programmatic response to mental health needs has been to offer peer support as part of HIV/AIDS support services. This is sometimes offered as an alternative option, though many people access peer support in addition to other professional mental health services. In Toronto, group programs are often used to offer

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

support for coping, strategies for reducing isolation and connections for building community. In this synthesis paper we will draw on reviews published since 2001 to outline: 1. 2. 3. 4.

Current conceptualization of mental health Existing mental health issues for people living with or vulnerable to HIV Current mental health interventions for people living with or vulnerable to HIV Recommendations for ACT

How mental health was conceptualized in the literature reviewed Mental health, as conceptualized in the research literature, often encompasses many definitions and standards of assessment. Many of the articles covered in this review approached mental health from a deficit model, and focused on mental illness and related mental health challenges. Descriptions of mental health in the reviews focused mostly on research related to stress, anxiety and depression. Stress was not clearly defined in the literature, but may be understood as the individualâ&#x20AC;&#x2122;s response to environmental demands or pressures. Researchers were consistent in reporting that the presentation of stress conditions is influenced by neighbourhood and ecological factors (concentrated disadvantage, unequal income distribution, residential segregation, institutionalized racism, crime, unemployment, litter, noise, traffic), and that these stress conditions affect HIV transmission and disease progression.3 Additional factors influencing the experience of stress include poor social support, limited coping strategies, and family/individual psychiatric history. 4 Depression was also not clearly defined in the literature, however most reviews referred to a diagnosis of a major depressive disorder. Dysthymia, a mood disorder, was also examined but to a lesser extent and with less clear findings. Two reviews reported major depressive disorders to occur twice as often among people living with HIV in comparison to HIV-negative individuals.5 The literature also marks a shift in rates of depression among people living with HIV with the introduction of HAART in 1996/97 in Canada. Studies conducted between 1988 and 1998 showed no significant difference in rates of major depressive disorder between people living with HIV who were asymptomatic and those experiencing HIV-related symptoms.6 Studies conducted after 1996, indicate that HIV-related symptoms are correlated with elevated rate of depression.7

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Anxiety is defined as a psychological and physiological state and generalized mood that can take several forms including phobia, social anxiety, obsessive-compulsive and posttraumatic stress. Most reviews however did not provide a definition of anxiety. Despite the many current anecdotal reports from front line workers in ASOs indicating a high prevalence of trauma among people living with HIV, there was limited reference to preexisting trauma in the literature reviewed. One review reported that people living with HIV with more experiences of lifetime trauma (abuse, assault, unexpected deaths) experienced faster disease progression and increased mortality.8 Another review summarized that although few studies had actually assessed the prevalence of Post Traumatic Stress Disorder (PTSD) in people living with HIV, some available data were suggesting that rates of PTSD may be as high as 36% in this population.9 A third review did focus on the concept and benefit of Post Traumatic Growth for people living with HIV.10 In this review, Post Traumatic Growth is defined as a â&#x20AC;&#x153;positive change in oneâ&#x20AC;&#x2122;s previous level of functioning as a result of the struggle with highly challenging life circumstancesâ&#x20AC;?11 and was identified as being beneficial to coping with an HIV diagnosis, as well as overall wellbeing. Overall, there were a few references made to mental health conditions such as personality disorders, cognitive disorders (including dementia), psychotic disorders, and substance-related disorders. Two articles focused on substance use12 and one review described memory disturbance, concentration problems and slowness of thinking as symptoms that are reported more often by individuals with HIV-related symptoms (in comparison to people living with HIV who are asymptomatic).13 Few articles considered positive coping skills, resilience, social support and other individual and community assets. However, no articles drew from more recent work on positive psychology. 14

Mental health issues for people living with HIV Prevalence of mental health related disorders The majority of reviews covered in this synthesis paper focused on mental health issues amongst people living with HIV. One review showed that although the diagnosis of mental health disorders among people living with HIV was fairly low, it was measured inconsistently, calling for more specific screening and increased diagnostic vigilance of depression and related clinical issues.15 Some reviews qualified depression as one of the mental health disorders most prevalent among people living with HIV. However, reviewers noted variation in prevalence rates, depending on whether the study looked at current prevalence (was the individual experiencing depression during the study) or lifetime prevalence (had the individual ever

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

experience depression). One review, examining the prevalence of affective disorders (anxiety, depression) among people living with HIV in the United States, found rates for current depressive disorders among them ranged from 1.4% to 26% (national prevalence estimates for current depressive disorder in the general population range from 5% to 10%). Lifetime prevalence rates also varied, but were substantially higher for people living with HIV. For instance, reviews reported lifetime prevalence rates for depression among people living with HIV to range from 30% to 50% compared to 6% to 17% lifetime prevalence rates in the general public. Reviewers also found variation in prevalence rates for current anxiety disorders, from 5% to 15% for people living with HIV (national current prevalence rates range from 10 to 15%). Lifetime prevalence rates of anxiety disorders for people living with HIV were actually somewhat lower than rates in the general population (4% to 19% lifetime prevalence for people living with HIV and 15% to 25% for the general population).16 When diagnostic categories are combined, from one-third to one-half of people living with HIV in the United States meets criteria for at least one current mental disorder. While most studies have not found significant difference in prevalence rates of current mental disorders when comparing people living with HIV and HIV-negative participants in the same study, these rates are substantially higher than community prevalence rates for current mental illness and more similar to rates observed for other people with chronic or life-threatening illness. The observed rates of mental disorders among people living with HIV may also reflect elevated rates of mental disorders in the populations most vulnerable to HIV infection.17 Most studies that examine substance use among people living with HIV have focused on people who use intravenous drugs (IDU), though studies that examine non-injection drug use (crack, cocaine) and alcohol are emerging. According to one review, the presence of any mental disorder is strongly associated with drug dependence, and most studies that examine the prevalence of co-occurring disorders (COD) (i.e., substance use and a second mental health disorder)1 with people living with HIV have observed high incidence of COD.18 The prevalence of COD is an important consideration since psychological symptoms have a negative influence on treatment retention and outcomes (for HIV, substance use/addiction, and mental health issues), and risk behaviours.

A diagnosis of COD described the presence of both a substance use disorder and at least one mental disorder, each established independently of the other and not simply a cluster of symptoms resulting from a single disorder.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

The link between HIV-related stigma and mental health disorder was also acknowledged by some reviews. Stigma was identified as an important factor in terms of the mental health of people living with HIV, indicating that the effects of HIV-related stigma was associated with depression, post traumatic stress disorder, as well as increased risk behaviours.19

Mental health and HIV management Reviews indicated that mental health disorders can impact HIV management, because they are linked to poor medication adherence, poorer treatment outcomes, and risk behaviours.20 However, further research is needed in order to establish the cause and effect relationship between mood disorder, medication adherence, and adverse HIV health outcomes.21 Medication adherence amongst people living with HIV is often discussed in relation to substance use and mental health.22 For instance people living with HIV with COD were less likely to be taking HIV medications, and this was higher for non-injection substance users23. In addition, heavy substance use and drug interaction proved to inhibit the management of depression and HIV.24 However, one review revealed that most people who use intravenous drugs tended not to receive HAART and attributed this situation to physiciansâ&#x20AC;&#x2122; reluctance to prescribe antiretroviral medication to them, believing that they would not adhere to treatment. The same review also indicated that the use of opiates, for instance methadone, has been linked with improvement in HAART adherence.25 There remains a gap in our understanding of potential interaction between polysubstance use and HIV medication, and the impact of co-morbid psychiatric illness and social instability on HAART adherence. Trauma has also been shown to impact medical adherence. One review suggested that people living with HIV who have also experienced trauma may face additional adherence challenges. These challenges can include trouble engaging in trusting relationships and social support (interactions that would be needed between a health care provider and patient.)26 In addition, life stress, care-giving demands, poor social support and limited disclosure of serostatus have also been linked to poor adherence.27 The reviews also indicated that several factors can enhance the management of depression among people living with HIV. Those include a focus on treating depression, putting in place HIV bereavement opportunities, managing or treating substance use, cognitive impairment, viral hepatitis, and drug interactions. In addition, HIV coping also has a positive effect on depression and can result in positive mental health outcomes overall. One review focused on â&#x20AC;&#x153;approach copingâ&#x20AC;? which include behaviours such as acceptance, confrontation, direct action, fighting spirit, planning, positive appraisal, and seeking social support.28 AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Approach coping is associated with increased positive affect (quality of life, total mental health, life satisfaction, hope, and positive mood); decreased negative affect (depression, mood disturbance, emotional distress, anxiety, anger, hopelessness, and traumatisation); better health behaviours (positive life styles changes, fewer medical appointment missed, times in detoxification programs, frequency of t-cell count, participation in AIDS groups, increased exercise, improved diet, decreased smoking, and decreased drug use) and better physical health (as measured by mortality, disease severity, and somatic symptoms, viral load, physical health, CD4 counts, survival time, and cortisol levels).29 Approach coping was more effective in most domains after the introduction of HAART, except for health behaviour where it was less effective. Direct action (“I concentrate my efforts on doing something about it”) and positive reappraisal (“I look for something good in what is happening”) were consistently associated with better outcomes in people coping with HIV across emotional (affective), health behaviour and physical health categories.30

Mental health and HIV disease progression Depressive symptoms have been associated with poor medication adherence, lower initiation of anti-retroviral therapy and HIV risk behaviour.31 The impact of depression on physical health (such as disease progression) of people living with HIV is described in relation to when HAART was introduced. Pre-HAART, one study found that gay men living with HIV who were asymptomatic and were depressed at enrolment in the study progressed to AIDS 1.4 years sooner than those who were not depressed at enrolment.32 Another study also indicated that people living with HIV with elevated depressive affect were at 67% greater risk of mortality compared to those with less elevated depressive affect, suggesting that depression either accelerated or increased the risk of mortality.33 After the introduction of HAART, the impact of depression on physical health is ambiguous.34 However, some studies suggest that depression is associated with worse clinical outcomes, such as increase in AIDS-related death, immunological progression of HIV/AIDS, and poor virological outcomes indicated by a slower suppression of the viral load in HIV.35 HAART is associated with decreased rates of depression among people living with HIV.36 The introduction of HAART improved the emotional and mental health of people living with HIV by improving health outcomes, enabling people to return to (or continue) work, improving quality of life, and improving the experience of wellbeing in households.37 Adverse psychosocial factors have also been linked to HIV disease progression.38 These adverse factors can be grouped into four categories: stress stimuli (e.g.: major life event, daily stress), personality type and coping style (e.g.: avoidant

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

coping, hopelessness), social support (e.g.: poor social participation, loneliness) and psychological distress (e.g.: perceived stress, anxiety). All were significantly associated with disease progression (AIDS stage, HIV disease or AIDS symptoms, AIDS mortality and CD4+ T-cell decline) except for poor social support which did not show any significant association with HIV disease progression. Stress and trauma were also linked to disease progression. Indeed, trauma was associated with almost a threefold increased risk of immune suppression, faster development of disease progression or AIDS-related death.39 One review found that an experience of trauma can increase how an individual interprets their physical health and may increase the reporting of physical complaints in people living with HIV, regardless of their HIV-related health status.40 For people living with HIV, trauma (sexual and physical abuse) has been associated with sexually transmitted disease, risky sexual behaviour, alcohol use and needle sharing, factors that might have a negative impact on someoneâ&#x20AC;&#x2122;s mental health and physical health.41

Mental health and vulnerability to HIV Two reviews focused on HIV prevention among people living with a mental health disorder.42 A few studies have shown that homelessness was consistently associated with frequent HIV testing among people living with a mental health disorder. The main finding regarding HIV testing among people with severe mental illness is that those who engage in unprotected sex and substance use were more likely to get tested for HIV. Having access to more social support, being in an intimate relationship and using many services were other factors associated with getting tested for HIV. However, the rate of testing was still low amongst people with severe mental illness suggesting a need for continued targeted HIV prevention strategies.43 Another review focused on sexual health education among people with a mental health disorder. According to this review, most educational programs offered were appreciated by their participants. Their evaluations indicate that participants were interested, engaged and gained increased comfort to make decisions about their health.44 Overall, the interventions that focused on HIV transmission and prevention decreased activities associated with HIV transmission, increased the likelihood of condoms use, and decreased the likelihood of engaging in sex with unknown person. Moreover, there was no reported deterioration in mental health or exacerbation of distress. One review looked at HIV risk and substance use, linking addiction and vulnerability to HIV. This review found that different ethnoracial populations in the United States (African Americans and Hispanics) were more heavily burdened with IDU-associated HIV infections. The review also identified non-injection drug use as a risk factor in the

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

transmission of HIV and cited studies that correlate risky sexual behaviour and non-IDU substance use, specifically with gay men. Heavy drinking was also associated with risky sex for both gay men and African American women. Studies also indicated that HIV transmission risk is increased when individuals use multiple substances.45

Women, HIV and mental health Most of the reviews focused on studies of gay men, and must be read with that limitation in mind as gender and sexual orientation are likely to shape peopleâ&#x20AC;&#x2122;s experience of physical, emotional, and mental health. A few reviews however, did include studies with women. One review focused on gender, HIV and mental health determining that psychosocial distress among women living with HIV is driven by many factors such as social support, coping strategies and cultural scripts regarding the expression of distress.This review found that gender inequality and poverty were independent drivers of poor mental health and that depression was more prevalent among women. In addition, women living with HIV may face greater levels of HIV-related stigma which has been associated with higher levels of depression and poorer quality of life. Mental illness was also shown to be higher among women living with HIV than among the general population46. Another review highlighted gender in relation to trauma. This review reported a â&#x20AC;&#x153;pattern of traumatisationâ&#x20AC;? and suggested that women living with HIV live in a context of interpersonal violence throughout their lifespan. The authors also reported that women living with HIV who had had at least three trauma experiences (i.e., mugging, robbery, physical assault or sexual assault) had a higher number of AIDS-defining conditions than those with fewer experiences of victimisation or trauma. 47 Substance use and health outcomes have also been shown to be different for men and women. One review indicated that IDU accounts for nearly twice as many AIDS cases in women than men, suggesting that HIV disease progression for women who inject drugs is occurring more quickly than for their male counterparts. This review also suggested that COD may be more prevalent in women than men, that women experience the negative consequences from substance use more quickly than men, are less likely to be treated for substance use and experience poorer treatment outcomes. 48

Limitations Several limitations related to research on HIV and mental health were noted in the reviews. Studies used different psychometric scales and often lacked consensus regarding the best or most appropriate measures of mental health domains.49 Small

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

sample sizes and relatively homogenous samples (most studies were conducted with men) make study outcomes less applicable other populations.50 Some limitations specific to the advent of HAART include the lack of data on the perception of HAART among patients and in particular around side effects, continued impairment, treatment fatigue or the â&#x20AC;&#x153;Lazarus phenomenonâ&#x20AC;? (ability of HAART to pull patients back from the brink of death after they have made peace with that fate). Most of the studies included in the reviews did not include a long-term follow-up.51 As a result, little is known about the long-term impact of antiretroviral treatment on mental health conditions. Lastly, many of the studies included in the reviews were conducted before the advent of HAART.

Interventions to improve the mental health of people living with or vulnerable to HIV All of the interventions included in the reviews focused on individuals (instead of structural or institutional-level interventions). The reviews included four types of mental health interventions: 1) pharmacologic; 2) psychotherapy; 3) complementary and alternative therapies; 4) and HIV treatment (HAART).

Pharmacological Interventions Pharmacologic treatment of major depression in people living with HIV has been identified as the standard line of treatment for depression, though the researchers did not provide any details about how often antidepressants were prescribed, nor under which conditions they are offered to people living with HIV dealing with severe depression.52 They did however indicate that there are always concerns about potential drug interactions for individuals on HAART, which require individual and ongoing assessment. Three categories of antidepressants were identified in one review: selective serotonin reuptake inhibitors (SSRIs), new antidepressants (Escitalopram, Reboxetine, Nefazodone and Mirtazapine) and Tricyclic antidepressants (TCAs).53 The most commonly prescribed antidepressant according to the authors are SSRIs. Studies show that 64% to 100% of people living with HIV using SSRIs show marked decreases in depressive symptoms, and report few side effects. In some cases, the side effects of the antidepressant have been shown to relieve patients of the side effects of HAART (insomnia, weight loss, diarrhea). However multiple side effects of the antidepressants (constipation, hypotension, headache, weight gain, and sexual dysfunction) can lead to poor adherence rates. One study has also shown TCAs are useful in treating neuropathic pain.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

The review noted above also looked at studies on psycho-stimulants and testosterone.54 Both were shown to be effective in decreasing levels of depression, though the authors did argue that additional research was necessary to strengthen the available evidence.

Psychotherapeutic Interventions Most of the reviews we looked at focused on psychotherapeutic interventions that included individual interpersonal therapy, cognitive behavioural therapy, and group therapy. Two reviews focused on stress reduction and management,55 a third review focused on depression,56 and a fourth reviewed the efficacy of interventions more generally on mental health (including depression and stress management).57 Overall, the reviews found that group psychotherapy interventions improve mental health domains (decrease depressive symptoms, decrease anxiety levels), global psychological functioning and symptom levels (increase quality of life, decrease fatigue, and increase some domains of social support). These studies, however, have not consistently shown group psychotherapy to effectively impact perceived stress levels, coping self-efficacy, immunological (CD4+ counts and viral load) and hormonal outcomes. Most reviews focused on cognitive behavioural interventions with people living with HIV. Two systematic reviews found that group cognitive behavioural therapy (CBT) is efficacious in reducing depressive symptoms.58 More intensive (over 10 weeks in length) interventions that included stress management skills training were shown to have a more significant beneficial impact on depression and anxiety.59 A third review of cognitive-behavioural stress management interventions designed for HIV-positive individuals found that stress management interventions are effective in reducing perceived stress levels and improving overall psychological adjustment and psychosocial functioning.60 The impact of stress management interventions on coping and on self-efficacy was mixed and no conclusive statement can be made. There is also little evidence showing that stress management interventions improved biological markers of immune system functioning.61 Stress management interventions were shown to reduce anxiety, depression, psychological distress, and fatigue and improve quality of life relative to controls.62 No improvements were observed on coping, social support, CD4+ counts, viral load or hormonal outcomes. All the effects were homogenous except for anxiety: study results showed that interventions are successful at reducing anxiety when they included more women, and/or when they have sampled more participants who were anxious at baseline. The interventions were less successful when they included older participants, or when they included more medication adherence information and or planning. (The

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

authors of this last review hypothesized that these findings could be explained by the fact that improving adherence requires increased vigilance and this may inadvertently elevate anxiety.)

Complementary and alternative therapies Although few studies exist, complementary and alternative interventions (i.e., exercise, acupuncture and massage therapy) all showed some impact on depressive symptoms. 63 Aerobic exercise significantly increased quality of life scores, acupuncture was shown to have some positive impact on sleep disturbances, and adolescents living with HIV who received massage therapy showed enhanced immune function.

HIV treatment (HAART) Studies have shown that HAART is associated with a significant improvement in depressive symptomatology among people living with HIV patients on HAART.64 Studies have also suggested that HAART is associated with improvement in quality of life, maintenance of functioning and well-being, improvements in neuropsychological functioning, and AIDS dementia.

Interventions to treat people living with HIV with a co-occurring disorder (COD) One review focused on research related to treatment delivery and outcomes for people living with HIV with COD. Drawing from the research evidence, the authors reported on the efficacy of integrated treatment models. Integrated treatment can be organized in different ways. Less integrated models include strategies where organizations communicate with each other about the nature of their services, where staff is cross-trained, and where organizations consult with professionals in other disciplines. More integrated models include coordinated treatment planning (where staff from different agencies meet to discuss a particular clients and develop a consistent treatment plan), and the co-location of services on a single site. Regardless of the version of integrated services, studies have shown that integrated care works when care is consistent between primary treatment and ancillary services, service access is seamless as clients move across levels of care, and that services are well coordinated. The reviewers also argue that integrated treatment for people living with HIV with a co-occurring disorder should prioritize and foster treatment adherence.65 A second review recommended that interventions addressing both access and adherence to antiretroviral medications should be developed for people living with HIV and who use substances.66

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Interventions with people living with a mental health diagnosis Two reviews considered the role of HIV prevention interventions for people living with mental health disorders. One examined studies of the HIV testing frequency and motivations for people with severe mental illness (SMI).67 The researchers found that the prevalence of HIV is higher among individuals with a SMI than among individuals in the general population and that HIV testing programs brought into mental health settings can enable people living with severe mental illness to test for HIV. Another review examined sexual health education for people experiencing mental health challenges; the authors found that sexual health education was both feasible and effective in decreasing rates of risky sexual behaviour in participants with severe mental health problems, up to 12 months following the intervention.68

Limitations of interventions to improve the mental health of people living with or vulnerable to HIV The literature identified a number of limitations in reviewing mental health interventions, which include: 1) use of multiple psychometric scales to measure the same condition; 2) a lack of clarity about which elements enable the intervention to work, and often a limited description of the intervention (no information pertaining to group size and composition, disease stage, intervention logistics, etc.); 3) short follow-up time; 4) homogenous study population (almost all intervention studies were conducted with men); and 5) a focus on group interventions (there is a limited evidence of the impact of individual interpersonal counselling for people living with HIV). In addition, most of the studies that focused on CBT had a control group that was not receiving any therapeutic intervention (they were on a waitlist), instead of comparing modalities. Therefore, the studies reviewed indicate that CBT is more effective at reducing depression and anxiety compared to offering no intervention. It remains unclear whether CBT is better at reducing depression in comparison to other therapeutic modalities (i.e., mindfulness, emotion-focused therapy). However, two studies that compared the effects of CBT to less structured support groups found that the outcomes for both did not differ significantly.69 In one, the participants in the less structured support group showed improvements on a broader range of measures and were more likely to maintain their gains at follow-up. In the other one, a comparison of efficacy of a cognitive behavioural group and an experimental therapy group for gay men did not show any significant difference in terms of the outcomes (both modalities were equally efficacious). Lastly, one review indicated that interventions designed to improve antiretroviral adherence and overall health of people living with HIV often omit to evaluate mental health problems or mental health treatments.70 AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Recommendations and Directions for ACT HIV and mental health are two intersecting health issues that affect the diverse communities that the AIDS Committee of Toronto (ACT) serves. The available reviews identified some limitations that reflect knowledge gaps about the intersection of HIV and mental health. Below we outline recommendations for ACT to respond to mental health as a health promotion priority for people living with and vulnerable to HIV. Recommendation #1: Continue to approach HIV through a social determinants of health framework. In the research literature there were multiple references to structural, environmental, and situational conditions that could impact mental health outcomes. Unemployment, stigma, oppression, discrimination, poverty, crime, noise, and vehicular traffic were all identified as factors that can impact stress and anxiety levels, HIV disease progression, and overall wellbeing. ACT should (a) continue to approach HIV through a social determinants of health framework, (b) acknowledge the reciprocal relationship between mental health and physical health, and how these are affected by social determinants, (c) assess any gaps in the social determinants approach, and (d) consider how those gaps may be addressed in programs or research. Recommendation #2: Ensure that ACT’s approach to mental health draws from an asset and/or strength-based approach. Most of the reviews included in this synthesis paper mostly approach mental health through a deficit-based framework; mental health was mostly conceptualized in terms of mental illness. While there is a dearth of research that draws from positive psychology or other strength-based approaches, it is important that ACT prioritize mental health interventions that acknowledge, mobilize, and build on our service users’ skills and resilience. Recommendation #3: Ensure mental health programming takes into account the particular needs, challenges and strengths of ACT’s different priority populations. By approaching HIV through a social determinants of health framework we are able to recognize the ways in which race, ethnicity, class, and gender shape people’s experience of health and illness. It is essential that ACT consider differences between populations, to ensure that programming is culturally competent and can respond to population specific needs, priorities, and forms of engagement. Most of the literature reviewed focused on research that was conducted with gay men living with HIV and were not representative of all of the diverse populations served by AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

ACT. Before implementing any mental health programming, it is important that ACT identifies the populations targeted by programming, and examines the specific needs and contexts that shape their experiences, understandings, and concerns related to mental health. Recommendation #4: Incorporate a non-diagnostic assessment of mental health as a tool to support the health and well-being of HIV-positive service users. The prevalence of mental health disorders has been reported to be higher among people living with HIV than in the general population. Given this increased prevalence for mental health conditions among people living with HIV, we recommend the development and implementation of a mental health assessment or screening tool to use within our support programming (counselling, case management, employment counselling, support groups). Consideration should be given to incorporating this screening tool into the client intake process. ACT staff are not qualified to assess for diagnostic purposes, nor do we expect development of this additional skill set. A mental health assessment tool would not be used to diagnose mental health disorders, but would help identify possible mental health issues. It could provide ACT staff with important information about the service usersâ&#x20AC;&#x2122; strengths and challenges in terms of mental health, and inform their orientation to ACTâ&#x20AC;&#x2122;s programs and services. For instance, an assessment tool could indicate that a service user struggles with social anxiety. This information could be useful to a case manager who could explore with the service user how social anxiety impacts their comfort in accessing different programs and services, and identify strategies to address this. If on the other hand, an assessment process indicated that mental illness was a potential concern for a service user, ACT would refer them to a partner organization able to diagnose and treat the illness. We believe an assessment tool would enable ACT to consistently provide appropriate and potentially more successful referrals. The literature has shown us that clients living with mental health disorders have poorer outcomes with regards to HIV disease progression and the overall health of people living with HIV, specifically with coping and general health management. The assessment tool can also enhance further ACTâ&#x20AC;&#x2122;s positive prevention initiatives by making mental health a specific focus of our work with people living with HIV.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Recommendation #5: HIV prevention activities to include consideration of mental health (or mental health components) According to the literature reviewed, poor mental health increases people’s vulnerability to HIV infection. For example, people who are experiencing mental health challenges may be less inclined to get tested for HIV, or may test less frequently, than others. This may be especially the case among people who are experiencing homelessness while also experiencing mental health challenges. We therefore recommend that HIV prevention programming consider the mental health issues that impact an individual’s vulnerability to HIV infection, and when appropriate, address mental health specifically. Some current ACT initiatives focusing on mental health and HIV prevention include Totally outRIGHT, SPUNK!, One Night Stand, and TowelTalk Bathhouse Counselling Program. Additional prevention activities could include outreach to mental health organizations and agencies. While ACT does not have the capacity to provide targeted HIV prevention to individuals living with serious mental health disorders, ACT could provide HIV information and education to staff working with these populations. Recommendation #6: Strengthen our understanding about mental health and HIV through the implementation of rigorous research and by supporting program development and evaluation. ACT’s research program is rooted in community based research and continues to narrow gaps in HIV research by informing program development at ACT. It is well positioned to address existing gaps in the knowledge pertaining mental health and HIV in relation to women and youth by undertaking needs assessment and by evaluating current programs that address the mental health components/needs of women and youth. This focus will not only increase ACT’s knowledge base about the immediate programmatic needs of women and youth, but also shape its program development, monitoring and evaluation. Moreover, given the scope of services offered at ACT and ongoing need for information on mental health issues related to HIV (e.g., addiction/substance use, trauma, and cognitive health), ACT’s research program could strategically determine the best ways to support and/or engage in research that could increase ACT’s knowledge based in those areas. The scope of the present review was limited because it did not include a targeted search on addiction and substance use. ACT’s research program could undertake the following steps: initiate new research in partnership with other relevant stakeholders, or synthesis existing research so that it can be readily used by service

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

providers, or incorporate emerging research in this area in its annual knowledge transfer and exchange activity (i.e., ACT Research Day). 1

Remis et al., 2010 Health Canada, 2002 3 Aiello et al., 2010 4 Brant, 2009 5 Collins et al., 2006; Ciesla and Roberts, 2001 6 Ciesla and Roberts, 2001 7 Hartzell et al., 2008; Leserman et al., 2008 8 Leserman, 2008 9 Brief et al., 2004 10 Sawyer et al., 2010 11 Sawyer et al., 2010, p. 437 12 Klinkenberg et al., 2004 13 Collins et al., 2006 14 Seligman, 2002 15 Ciesla and Roberts, 2001 16 Klinkenberg et al., 2004 17 Klinkenberg et al., 2004 18 Klikenberg et al., 2004 19 Whetten et al., 2008 20 Klinkenberg et al., 2004; Pyne et. al., 2009; Whetten et al., 208 21 Uldall et al., 2004 22 Uldall et al., 2004; Klinkenberg et al.,2004 23 Uldall et al., 2004 24 Pyne et al., 2011 25 Uldall et al., 2004 26 Brief et al., 2004 27 Uldall et al., 2004 28 Moskowit et al.,2009 29 Moskowit et al.,2009 30 Moskowit et al., 2009 31 Hartzell et al., 2008; Brandt, 2009; Whetten, 2008 32 Page-Shafer K. et al., 1996 as cited in Leserman, 2008 33 Mayne TJ, et al., 1996 as cited in Leserman, 2008 34 Hartzell et al., 2008 35 Leserman, 2008 36 Hartzell et al., 2008 37 Beard et al., 2009 38 Chida and Vedhara, 2009 39 Leserman, 2008 40 Brief et al., 2004 41 Whetten, 2008 2

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Higgins et al., 2006; Senn, 2009 Senn and Carey, 2009 44 Higgins et al., 2006 45 Klinkenberg et al, 2004 46 Brandt, 2009 47 Brief et al., 2004 48 Klinkenberg et al.,2004 49 Brandt, 2009; Chida andVedhara, 2009; Collins, 2006; Pyne, 2011 50 Brandt, 2009; Leserman, 2008; Scharko, 2010 51 Beard et al., 2009 52 Fulk et al., 2004 53 Fulk et al., 2004 54 Fulk et al., 2004 55 Brown et al., 2008; Scott-Sheldon et al., 2008 56 Himelhoch et al., 2007 57 Sherman et al., 2004 43

Himelhoch et al., 2007; Crepaz et al., 2008 Crepaz et al., 2008 60 Brown and Vanable, 2008 61 Brown and Vanable, 2008; Crepaz et al., 2008 62 Scott-Sheldon et al., 2008 63 Fulk et al., 2004 59

Fulk et al., 2004 Klinkenberg et al., 2004 66 Uldall et al., 2004 67 Senn et al., 2009 68 Higgins et al., 2006 69 Scott-Sheldon et al. 2008 70 Uldall et al., 2004 65

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

References: HIV and Mental Health Aiello, A.E., Simanek, A. M., Galea, S. (2010). Population levels of psychological stress Herpesvirus reactivation and HIV. AIDS and Behavior. 14(2), 308-317. Beard, J., Feeley, F., Rosen, S. (2009). Economic and quality of life outcomes of antiretroviral therapy for HIV/AIDS in developing countries: a systematic literature review. AIDS Care. 21(11), 1343-1356. Brandt, R. (2009). The mental health of people living with HIV/AIDS in Africa: a systematic review. African Journal of AIDS Research. 8(2), 123-133. Brandt, R. (2009). Putting Mental Health on the Agenda for HIV Positive Women: A Review of Evidence from Sub Saharan Africa. Women & Health. 49, 215-228. Brief, D. J., Bollinger, A. R., Vielhauer, M. J., Berger-Greenstein, J. A., Morgan, E. E., Brady, S. M., Buondonno, L. M., Keane, T. M. (2004). Understanding the interface of HIV, trauma, posttraumatic stress disorder, and substance use and its implications for health outcomes. AIDS Care. 16:sup1, 97-120. Brown, J. L., Vanable, P.A. (2008). Cognitive- behavioral stress management interventions for persons living with HIV: A review and critique of the literature. Annals of Behavioral Medicine. 38, 26-40. Chida, Y., Vedhara, K. (2009). Adverse psychosocial factors predict poorer prognosis in HIV disease: a meta-analytic review of prospective investigations. Brain Behaviour and Immunity. 23, 434-445. Cielsa, J.A., Roberts, J.E. (2001). Meta-analysis of the relationship between HIV infection and risk for depressive disorders. American Journal of Psychiatry. 158 (5), 725730. Collins, P. Y., Holman, A.R., Freeman, M.C., Patel, V. (2006). What is the relevance of mental health to HIV/AIDS care and treatment programs in developing countries? A systematic review. AIDS. 20, 1571-1582. Crepaz, N., Passin, W.F., Herbst, J.H., Rama, S.M. (2008). Meta-analysis of cognitive behavioral interventions on HIV-positive persons mental health and immune functioning. Health Psychology. 27(1), 4-14. Fulk, L.J., Phillips, K.D., Bopp, C.M., Hand, G.A. (2004). Depression in HIV-infected patients allopathic, complementary, and alternative treatment. Journal of Psychosomatic Research. 57, 339-351. Health Canada. (2002). A Report on Mental Illnesses in Canada. Ottawa, Canada .

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Hartzell, J.D., Janke, I.E., Weintrob, A.C. (2008). Impact Depression on HIV Outcomes in the HAART era. Journal of antimicrobial Chemotherapy. 62, 246-255. Higgins, A., Barker, P., Begley, C.M. (2006). Sexual health education for people with mental health problems: was can we learn from the literature? Journal of Psychiatric Mental Health Nursing. 13, 687-697. Himelhoch, S., Medoff, D., Oyeniyi, G. (2007). Efficacy of group psychotherapy to reduce depressive symptoms among HIV infected individuals : a systematic review and meta-analysis. AIDS Patient Care and STDs. 21 (10), 732-739. Klinkenberg, W.D., Sacks, S. (2004). Mental disorders and drug abuse in persons living with HIV/AIDS. AIDS Care. 16, 22-42. Komiti, A., Judd, F., Grech, P., Mijch, A., Hoy, J., Lloyd, J.H., Street, A. (2001). Suicidal behavior in people with HIV/AIDS a review. Australian and New Zealand Journal of Psychiatry. 35, 747-757. Leserman, J. (2008). Role of depression, stress and trauma in HIV disease progression. Psychosomatic Medicine. 70, 539-545. Moskowitz, J.T., Hult, J.R., Bussolari, C., Acree, M. (2009). What works in coping with HIV? A meta-analysis with implications for coping with serious illness. Psychological Bulletin. 135 (1), 121-141. Pyne, J.M., Ash, S.M., Lincourt, K., Kilbourne, A.M., Bowman C., Atkinson H., Gifford A. (2011). Quality Indicators for Depression Care in HIV Patients. AIDS Care. 20 (9), 10751083. Remis, R., Swantee, C. and Liu, J. (2010). Report on HIV/AIDS in Ontario 2008. Ontario HIV Epidemiologic Monitoring Unit. Toronto, Canada. Sawyer, A., Ayers S., Field, A.P. (2010). Post traumatic growth and adjustment among individual with cancer or HIV/AIDS: A meta-analysis. Clinical Psychology Review. 30(4), 436-447. Scharko, A.M. (2010). DSM psychiatric disorders in the context of pediatric HIV/AIDS. AIDS Care. 18(5), 441-445. Scott- Sheldon, L.A.J., Kalichman, S.C., Carey, M.P., Fielder, R. L. (2008). Stress management interventions for HIV+ adults: a meta-analysis of randomized controlled trials, 1989 to 2006. Health Psychology. 27 (2), 129-139. Seligman, M.E.P. (2002). Authentic happiness: Using the new positive psychology to realize potential for lasting fulfillment. New York: Free Press.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Senn, T.E., Carey, M.P. (2009). HIV testing Among Individuals with a Severe Mental Illness: Review, Suggestions for Research and Clinical Implications. Psychological Medicine. 39 (3), 355-363. Sherman, A., Mossier, L., Burlingame, G.M., Ulman, K.H., Cleary, T., Simonton, S., Latif, U., Hazelton, L., Strauss, B. (2004). Group intervention for patients with cancer and HIV disease: part I: effects on psychosocial and functional outcomes at different phases of illness. International Journal of Group Psychotherapy. 54 (1), 29-82. Whetten K., Reif. S., Whetten R., Murphy-McMilla L.K. (2008). Trauma, mental health, distrust, and stigma among HIV positive persons: implications for effective care. Psychosomatic Medicine. 70 (5), 531-538. Uldall, K.K., Palmer, N.B., Whetten, K., Mellins, C. (2004). Adherence in people living with HIV/AIDS, mental illness, and chemical dependency: a review of the literature. AIDS Care. 16:sup1, 71-96.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Interpretation: HIV Across the Lifespan In Canada, most people living with HIV are diagnosed in their 20s, 30s or 40s. However, HIV affects people across the entire lifespan, from childhood to old age, and through different stages of life. For example:   

babies can be infected perinatally (if pregnant HIV-positive women are undiagnosed or do not receive appropriate treatment after diagnosis) many adults are infected at an older age (i.e., over the age of 50) greater numbers of people who are HIV-positive are living into old age with improvements in care and treatment

In addition, people living with HIV, like all others, experience various age or life stage transitions during the course of maturing into adulthood and growing older. The various age or life stages include dependent child or youth, young adulthood, changes in employment stability and career advancement, domestic partnerships, retirement, changes in housing tenure and stability, and so on. Many people living with HIV also experience major life events that may cause their needs to change, or affect their ability to manage their health (e.g., diminished employment status and financial well-being because of illness, moving from a state of feeling debilitated to feeling empowered as their health or outlook improves, etc.). This suggests that the mode and content of care, treatment and support may vary over the course of a lifetime as people age, transition from one life stage to another, or as their circumstances change. HIV across the lifespan refers to understanding how HIV-related needs and priorities may change, and managing these accordingly, such as: 



growing older (e.g., young people transitioning from programs for children and adolescents to programs for young adults; responding to the needs of people newly diagnosed as well as people living long-term with HIV) managing HIV in relation to changes in health and wellbeing over time, and the physical, social and psychological impacts of concurrent health conditions associated with aging understanding how HIV intersects with changes in outlook, planning for the future and maintaining good health, in addition to helping people to remain productive and engaged

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Understanding the issues related to HIV across the lifespan would help organizations offer (a) a continuum of care and support for people of different ages and lifecycle stages (i.e., from youth to old age, and from newly diagnosed to living long-term with HIV), and (b) HIV prevention strategies and messages that are more attuned to peopleâ&#x20AC;&#x2122;s interests, circumstances and needs. Addressing HIV across the lifespan would require collaboration among agencies that normally focus on specific aspects of care and support, or on particular population segments defined by age or life stage.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Synthesis Paper: HIV Across the Lifespan Introduction Though ‘HIV across the lifespan’ is not yet a concept that is widely used in research, it has been identified as a research priority that includes:1  



HIV and aging; the physical, social and psychological impacts of concurrent health conditions (e.g., cardiovascular disease, diabetes, bone and joint disorders) that manifest themselves as people living with HIV grow older; planning for the future, and maintaining good health while growing older.

The above interpretation of ‘HIV across the lifespan’ refers to issues that are particularly applicable to understanding and managing HIV among people who are already diagnosed. However, a lifespan approach to HIV should also include HIV prevention in relation to aging and lifecycle changes among people who are uninfected or “at risk” for HIV infection. For example, recognizing and understanding how and why older people may be exposed to HIV would help to ensure that HIV prevention programs address the needs and circumstances of older people. Therefore, we have incorporated available knowledge (i.e., reviews) that may inform HIV prevention efforts. In this synthesis, we have presented a range of issues that are germane to understanding and responding to HIV across people’s lifespan, organized under the two primary headings - aging and older adults, and children, adolescents and youth. We based this way of organizing the discussion on a few considerations. First, our searches of the research databases did not yield any reviews associated with “HIV across the lifespan” as a search term for titles or abstracts. Second, as the project progressed, it became evident that ‘HIV across the lifespan’ may refer to a service model, rather than to an identifiable body of knowledge or research domain like stigma or mental health. Indeed, this perspective – that HIV across the lifespan is more akin to a service model – also emerged from focus groups with service providers, community members, researchers and policy makers.2 As a service model, ‘HIV across the lifespan’ evokes a range of services to accommodate people’s changing needs, circumstances and priorities, which would be more efficiently offered in a coordinated fashion across several related agencies (including social or health agencies that are not HIV

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

organizations). Our third consideration was that the primary headings (aging and older adults, and children, adolescents and youth) are already familiar to service providers. We envision an outcome in which service providers, based on their better understanding of issues related to adults and youth, determine how and/or which services would be available across collaborating agencies, and how they would link service users to various services and organizations depending on the specific needs, challenges and priorities of those service users.

Interpreting aging, older adults and growing older in relation to HIV Growing older is not something that is peculiar to older people. Also, the needs and priorities of people living with HIV and others affected by HIV change as they mature or grow older. For example, children living with HIV will require different kinds of support as they grow older and as their life circumstances change from child to adolescent, to young adult and through adulthood. Older adults also experience changing circumstances with the passage of time. Aging is a normal biological process. It is not selective – everybody ages and experiences to greater or lesser degree the effects of aging or age-related challenges. Thus, aging is not a disease. Aging is also not a risk factor, just like being born is not a risk factor for dying. Sometimes, however, the ‘HIV and aging’ literature verges on discussing aging as though aging itself was a disease, or another co-morbidity. If service providers and researchers are not thoughtful about ‘HIV and aging’, they may end up pathologizing aging, older people and even young people transitioning to adulthood, such that young adults, older people or the aged become like other socially marginalized population groups who others construct as spoiled, flawed, or inherently difficult. The problem of ‘HIV and aging’, at least from the ‘HIV and aging’ literature, is that (1) older people are at risk for HIV infection, (2) as people living with HIV age, they become more susceptible to other diseases, particularly those associated with aging and growing old, and (3) the treatments for those other diseases may complicate the management of HIV (or vice verse). Similarly, as children living with HIV grow older, new priorities or challenges may emerge. For example, the onset of dating and being sexually active, the need for higher education, and entering the workforce are new priorities that emerge over time. While it is important to understand and treat disease (HIV and related issues in this particular case), the singular focus on disease (what is wrong with people as they age, particularly among older people) may serve to reduce people to a collection of risks and diseases. Service providers must be sensitive to recognizing the abilities and

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

opportunities that also come with maturing, growing older, or aging, rather than as lifestage or demographic changes that are inherently diseased, unhealthy or fraught.

Children, Adolescents and Youth Epidemiology One hundred and thirty-seven HIV-infected infants were born in Canada between 1999 and 2008 (57% were born to mothers from Africa and the Caribbean). This number includes most of the 71 HIV-infected infants born in Ontario 1994-2008. However, mother-to-infant HIV transmissions in Ontario have declined substantially since the 1990s â&#x20AC;&#x201C; from a peak of 10 per year in 1993-1994 to about 2 per year in 2005-2006, though the number may have increased to 5 per year in 2007-2008.3 Youth aged 15-29 accounted for between one-fifth and one-quarter of positive HIV test reports in Canada between 1998 and 2008.4 Males account for the majority of these positive tests, ranging from 57% to 67%. However, females outnumber males among positive test reports for youth aged 15-19 years.

HIV risk As outlined above, since the 1990s the risk of HIV transmission from mother to child has decreased substantially. This decrease is due to a remarkable uptake of HIV testing among pregnant women and more effective antiretroviral interventions to reduce the risk of vertical transmission (i.e., from mother to child).5 In Canada, exposure to HIV among youth (as opposed to infants) has been attributed mainly to inconsistent condom use and multiple sex partners.6 In the USA in particular, researchers have noted that young men who have sex with men (YMSM) are more likely than their heterosexual counterparts to use drugs and to experience depression and psychological distress. Compared to older MSM, the factors that predict risky sex among YMSM include their greater likelihood to have unprotected anal intercourse (UAI) with someone outside their primary sexual relationship, their greater involvement in sex work, and their greater drug use.7 In the USA, researchers have tried to explain why the incidence and prevalence of HIV is significantly higher among Black and Latino YMSM, compared to their white counterparts.8 Possible explanations focus on their higher rates of undiagnosed HIV infection, greater likelihood of experiencing childhood sexual abuse, and peer norms that are less supportive of condom use and safer sex.9

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Researchers have noted that YMSM are not well served by current HIV prevention efforts.10 This research points to a general lack of HIV prevention for YMSM compared to their older or adult counterparts. There is also a need for more research on protective factors and resilience, as well as greater attention to the role of the family in HIV prevention and health behaviours. In North America, adolescent females represent the majority of all adolescents diagnosed with HIV.11 In various US surveys, between one-fifth and one-quarter of adolescent females had multiple or concurrent sexual partners. Moreover, research studies also show that only one-third or less of adolescent girls who are sexually active use condoms consistently.12 This research suggests that the choice to use condoms (or not) resided with their sexual partner, which indicates that girls may be unable or unwilling to exercise control over sexual decision-making.

Well-being of children and youth Research has demonstrated that HIV is associated with a range of cognitive difficulties in perinatally infected infants and young children.13 However, cognitive deficits may diminish or disappear when children benefit from a supportive environment of family and caregivers, and as they grow older. Moreover, children born since the inception of HAART in the mid-1990s (i.e., have benefitted from HAART) demonstrate better cognitive health than those born earlier. Researchers stress that children living with HIV who are raised (or adjust to their diagnosis) in a supportive environment of family and caregivers have better psychosocial outcomes and coping strategies, and better adherence to their drug regimens.14 However, perinatally infected children will have at least one parent who is also HIV-positive. Many of those parents may themselves experience stress associated with their own health and longevity, and some may also experience financial hardship. This means that the parents themselves need an environment that supports or builds their capacity and resilience as parents. This extensive web or network of support ranges from the interpersonal and immediate needs of the children, to social policy that invests in the wellbeing and resilience of children and their households.15 The knowledge base related to HIV and YMSM in North America has focused almost exclusively on understanding risk behaviour as a way of explaining HIV incidence and prevalence. However, in terms of vulnerability to HIV among YMSM, there seems to be a lack of research related to the social determinants of health. Issues such as access to housing, jobs, income, planning for the future and access to appropriate health information have not been sufficiently addressed. Moreover, the role of gender, social

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

oppression (e.g., racism, homophobia) and family wellbeing appear to have been somewhat under-researched. Research in several countries has demonstrated that children and adolescents in HIVaffected households are disadvantaged in key aspects of their material wellbeing.16 HIV-affected households are more likely to experience food insecurity, more likely to incur debts, and more likely to experience economic decline, compared to households that are not affected by HIV. Some of these problems that affect children have been successfully addressed by interventions designed to support families affected by HIV.17

Sex and gender Among adults, sex and gender affect vulnerability to HIV, both biologically (i.e., women are more susceptible to HIV infection than men) and socially (gender norms and ideologies often prescribe the roles, expectations and behaviours of men and women and compound the risk of HIV infection).18 Gender may also play a role in access to and success of HIV prevention efforts. However, the role of sex and gender in HIV among children and adolescents is still an emerging field. On the whole, adolescent girls and young women appear to be more vulnerable to HIV infection than adolescent boys and adult females.19 Differences between boys and girls have also been noted in the risk of acquiring HIV through mother-to-infant transmission, treatment resistance, disease progression and school attendance.20

Interventions There is evidence of small-group sexual behaviour interventions that reduce HIV risk by enhancing adolescentsâ&#x20AC;&#x2122; skills and practices related to communication, condom use and frequency of sexual relations. Among 44 interventions for 11â&#x20AC;&#x201C;18 year olds evaluated in one study, successful interventions were those that were implemented with noninstitutionalized participants, distributed condoms to participants, spent more time training participants to use condoms, and spent more time on generic sex education (rather than on content specifically related to HIV).21 Interventions to prevent HIV among adolescents and youth should not only provide information about sex and risk, but should also include training to enhance risk-reduction motivation and behaviour change.22 Interventions should also engage adolescents at all stages of their development, and accommodate differences in ethno-racial background and socio-economic status. Interventions should not only be technically sound, but should be guided by values that acknowledge and support young peopleâ&#x20AC;&#x2122;s involvement in health and HIV interventions, a

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

meaningful role for adults, the sustainability of interventions, and innovative ways of providing knowledge.23 Using the popular media (radio, magazines, Internet-based social networking, etc.) is a recognized way to reach adolescents and young people, and get their attention.24 Therefore, creative use of popular media may be indispensible to the success of interventions for adolescents and young people. Media messages will also help to reach young people who do not have access to the formal healthcare system, experience social isolation, live in rural or isolated communities, or are out of school. Interventions may still be affected by a number of technical challenges that may limit their general applicability.25 These challenges include sampling and recruitment, the way how behavioural outcomes are measured, participant attrition, and follow-up beyond the relatively short time span during which interventions are tested.

Role of the family in HIV prevention Research among children has shown that supportive families are integral to the wellbeing and development of children living with HIV.26 More generally, the family can play a crucial role in shaping health behaviours and attitudes toward health among children and adolescents. Families are a primary source of culturally competent and relevant practices that may help children, adolescents and youth maintain good health. Where parental or elder involvement and support are lacking, young people may be more likely to engage in high-risk sexual behaviours.27 As such, families are instrumental to HIV prevention efforts for adolescents and youth.28 Family-focussed interventions could support and strengthen the “long-term caring capacity” of families,29 and enable families to communicate productively about sex and HIV. Moreover, familyfocussed interventions are likely to be sustainable in the long run, compared to schoolbased or social group interventions. Interventions and programs are needed to strengthen the financial capacity and economic wellbeing of families, support the role of the family in HIV-related services, and promote the intellectual, emotional and physical development of children.30 For example, cash transfers to HIV-affected households with children can improve the capacity of households to maintain spending on necessities that benefit children, such a nutrition and school.31 Wherever possible, interventions should focus on strengthening families and their role in HIV prevention, treatment, care and support. However, though “family” is usually understood to mean a traditional biological family, intervention research ought to recognize the role and potential of other types of family arrangements, including the extended family (i.e., elders, grandparents, etc.).

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Aging and Older Adults Epidemiology Age-specific definitions of “older adults” often refer to people aged 50 and older32 or 55 and older,33 although a minimum age of 45 years has also been used to define older people.34 Since the introduction of highly active anti-retroviral therapy (HAART) in the mid to late 1990s, life expectancy among people living with HIV has been increasing, and people aged 50 and over represent an increasing proportion of people living with HIV; older adults also account for an increasing share of new diagnoses.35 In the USA, for example, in 2005 people 50 years and older accounted for 15% of new HIV diagnoses and almost one-quarter of all people living with HIV.36 In Canada, between 1999 and 2008, the proportion of positive HIV test reports attributed to people aged 50 and over increased from 10.6% to 15.3%.37 Historically, among older adults, men (mainly MSM) accounted for the largest proportion of test reports though the proportion of women has increased from 10.5% of positive test reports in 1985-1996 to 15.8% in 1997-2008. This trend illustrates the rising prominence of heterosexual exposure in the spread of HIV in Canada – from 2006 to 2008 almost half of HIV diagnoses among older adults have been attributed to heterosexual exposure. In Ontario, published data on new HIV diagnoses suggest that older people represent an increasing share of new HIV diagnoses. From 1985 to 1998, men and women aged 50 and older accounted for 6.8% and 5.9% respectively of all diagnoses. From 1999 to 2008, the proportions had risen to 12% among men and 8.2% among women. Overall, the proportion of HIV diagnoses attributed to people aged 50 and older rose from 6.7% to approximately 11.0% of all diagnoses.38

Risk and vulnerability Available research suggests a notable lack of HIV prevention programs for older adults,39 and that HIV prevention programs are usually not designed to accommodate changing needs, concerns or perspectives of different age cohorts among adults.40 This lack of specific attention to aging and older adulthood has been attributed to widespread misunderstanding or ignorance about sexuality and sexual behaviour among older adults.41 In addition, physicians often may not appropriately assess their older patients for HIV or STI risk, and may not recommend HIV testing.42 This lack of information for older adults is at odds with the fact that older adults are sexually active, and engage in sexual behaviours that may elevate their risk for acquiring HIV.43 Though unsafe sex may be the proximal cause of HIV transmission among older adults, their vulnerability to HIV may be due to a number of other factors. Older adults “may already have weakened immune systems” which increases their vulnerability to HIV infection.44

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Among men, for example, erectile dysfunction may be part of the aging process. Men who experience erectile dysfunction may have difficulty achieving sexual satisfaction using condoms, which may lead to inconsistent condom use or dispensing with condoms altogether.45 Among menopausal and post-menopausal women, dryness of the vaginal tissue may result in vaginal tearing during penetrative sex, which may increase their susceptibility to HIV.46 Vulnerability to HIV among older adults may also be associated with substance use, as well as higher rates of depression and memory loss, which may interfere with their ability to negotiate or practice safer sex.47

HIV and aging, HIV among older adults Research has focussed on five sets of factors that may influence the health of older adults living with HIV, and the progression of HIV among older adults. First, compared to younger people, older adults may be diagnosed later in the disease because of inadequate assessment of their risk or inadequate screening for HIV, and also because other physical and psychological conditions may mask HIV infection.48 Second, older adults may take longer to respond to HIV treatments.49 Third, the presence of co-morbid conditions may complicate the management of HIV.50 Fourth, older adults may have fewer sources of social support which, together with the effects of HIV stigma and the presence of psychological disorders, may diminish their ability to cope with HIV. 51 Fifth, as a consequence of combined effect of the first four factors, HIV may accelerate the aging process.52 The first three factors also imply a more rapid progression of the disease among older people. The following observations illustrate the five factors outlined previously. Based on the literature cited above, older adults appear more likely than younger adults to experience:       

shorter period between HIV and AIDS diagnosis; lower CD4+ cell counts at diagnosis; a slower rate of increase in CD4+ cell count and a longer period for viral suppression after starting ART; greater risk of toxicity for HIV medications; greater susceptibility to neurocognitive impairment; greater prevalence of dementia and depression; higher rate of co-morbid conditions (especially cardiovascular disease, bone and joint disorders, cancer, etc.); higher mortality

Compared to younger adults, older people living with HIV may also experience diminished social support because they have fewer surviving peers, but also because of

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

a general lack of appropriate services for older adults. The lack of support and services has implications for older adults’ ability or willingness to disclose that they are living with HIV, their access to income supports, and their employment prospects.53 Moreover, the challenges noted above may be exacerbated by a general lack of guidelines for treating HIV in older adults.54 Notwithstanding the above challenges and pathologies, there is also evidence that older people living with HIV are resilient in the presence of HIV. For example, as far as treatment is concerned, older people living with HIV may demonstrate better treatment adherence55 (though this may be tempered by greater susceptibility to depression and neurocognitve impairment). It has been suggested that people who suffer from chronic illnesses sometimes experience the “positive effects of spirituality” and harness more spiritual resources, which contribute to remaining healthy in the face of a chronic, debilitating condition like HIV.56

HIV prevention for older adults The following perspectives may inform HIV prevention programs for older adults:57 



Over the course of the HIV epidemic in North America, most of the infections have been among younger adults (i.e., less 40 years old), and HIV prevention efforts have responded to this trend. Therefore, many older people may lack knowledge and awareness of HIV, which may cause them to underestimate their risk of acquiring HIV. Building knowledge and awareness of HIV among older adults should therefore be a priority. Programs for older adults should begin from an understanding of how much knowledge people already have, and their willingness or ability to initiate and sustain behaviour change. Healthcare providers have not been proactive in discussing sexual health with their older patients. Building the ability and willingness of physicians and their older patients to communicate about the patients’ sexual health is a priority. Even though older people are sexually active, social norms do not generally recognize or accept that older people are sexually active, or may be engaging in sexual behaviours that put them at risk for HIV. AIDS service organizations may respond to this gap by engaging older people in their activities, developing sexual health initiatives for older people, and promoting HIV testing for older people. HIV policy has focussed on recognized population groups that are particularly affected by HIV, but without much emphasis on aging and older adults. Support from policy makers would be instrumental to the sustainability and success of initiatives to promote sexual health and HIV prevention among older adults.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Recommendations and Directions for ACT We outline five directions for consideration by ACT, based on critical knowledge gaps or program opportunities that were identified in the reviews (or we surmised from the discussions in the reviews), and on the priority populations identified in ACT’s Strategic Plan 2010-2015 (i.e., gay men, women and youth). The recommendations suggest programming or research opportunities that ACT may explore. Where appropriate or feasible, the programming and research opportunities could result in new programs, or be addressed within the framework of existing programs and services. ACT may also consider its role in pursuing the recommended directions. For example, ACT may pursue some of the directions independently, or through collaboration with other stakeholder organizations. In addition, ACT’s role may be to motivate appropriate institutions to act on the recommendations.

Direction 1 – HIV prevention, outreach and support for older adults Our research suggests that older adults (i.e., 50 years and older) have been somewhat neglected in HIV prevention and community development. Consequently, there is a need for research to understand (a) risk, vulnerability and resilience among older adults, (b) the needs, challenges and priorities of older or aging people living with HIV, and (c) how those issues may be addressed programmatically. We also suggest that engaging older adults may support an inter-generational approach to strengthening HIV prevention for younger people (e.g., grandparents or other elders helping young people in their circle to recognize and negotiate risk), and supporting children and adolescents who are living with HIV. Our inter-generational perspective recognizes that support and information from trusted, familiar sources is often accorded a higher credibility than information from an unfamiliar institution. Moreover, the delivery of information and advice is enhanced where there are opportunities for follow-up within an ongoing relationship. However, an inter-generational approach to HIV prevention may require a process to help older adults improve their knowledge base about HIV and their confidence to talk about pleasure and risk.

Direction 2 – accommodating and addressing life-stage transitions among PHAs The reviews on young people recognize the need to support PHAs through the transition from childhood to adolescence to young adulthood, though none of the reviews addressed transitions substantively. There are two issues to consider in relation to young people living with HIV. First, infected children benefit from support programs but, on reaching adolescence or young adulthood (particularly the latter), the children may be left to navigate a complex array of programs for adults without proper preparation or

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

guidance. These young people may find themselves in programs that are inappropriate for their age, needs or life experience. Second, there is a dearth of programs that help young adults living with HIV address emerging and complex challenges such as dating, sexual relationships, career aspirations, and possible parenthood. Both issues merit a response through appropriate programming, though research may also be needed to inform any new program directions. The reviews did not substantially address issues of reproductive health and fertility, though some adults living with HIV wish to have children. This is an important gap to which service providers should attend.

Direction 3 â&#x20AC;&#x201C; young women Currently, most research and programming for women either focus on adult women who already live with HIV or whose circumstances may increase their vulnerability to HIV. However, Canadian epidemiological data show that, among adolescents and young adults (i.e., 15-19 years old), girls and young women account for the majority of positive HIV test reports. This calls for research to understand risk, vulnerability and protective factors among girls and young women, programming to address those issues, support for girls and young women who live with HIV, and programs that deliver information and support in ways that are likely to capture the attention and interest of girls and young women.

Direction 4 â&#x20AC;&#x201C; young MSM In North America, there is already a great deal of research on risk and vulnerability among young MSM, and programs to address those issues as well. However, this research has overlooked the factors that may facilitate a better understanding of resilience, and vulnerability in relation to the social determinants of health. Our recommendation is for new approaches to research among young MSM that focus more squarely on the needs, challenges and potential of young MSM, and provide better understanding of the lives of young MSM in relation to the social determinants of health. Programs should be informed by more enlightened understanding of needs, challenges, potential and social determinants, in addition to models of community engagement that are informed by current trends in social networking and information circulation.

Direction 5 â&#x20AC;&#x201C; support for families (see also Directions 2, 3 and 4 above) This direction calls for research and interventions to support the role of families in support, care and HIV prevention. In general, interventions related to HIV prevention and support focus on individuals as more or less knowledgeable, self-interested, capable agents of their own wellbeing. However, people circulate among networks, which are instrumental to how they understand and manage their health and wellbeing. To the extent that children are socialized in families, and families are invested in the AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

wellbeing of its members collectively and individually, families have a role in supporting family members who are living with HIV, and in HIV prevention. However, research to support family-based interventions is still sparse, even though family-based interventions have been implemented in some parts of Africa. In the Canadian context, research and interventions would require an expanded view of “family” to include biological, chosen and extended families.

Direction 6 – HIV across the lifespan as a service model The concept of ‘HIV across the lifespan’ forces recognition that the needs and priorities of people living with HIV change over the course of living with HIV. However, it is perhaps inconceivable that any particular AIDS service organization can offer the range of service that address new or changing needs and priorities as people living with HVI grow older or to accommodate lifecycle changes. This suggest that meaningfully engaging the reality of ‘HIV across the lifespan’ requires a more coordinated approach to services among health and social service organizations. ACT and its community partners should explore the feasibility, content and practical implications of more or better coordination. This may entail research and consultation among organizations, service users and policy makers to inform how ‘HIV across the lifespan’ can be understood, and whether or how the concept may inform programs and services.

O’Brien et al., 2010 See Mental Health, Stigma and HIV across the Lifespan: Feedback from Stakeholders on ACT’s Health Promotion Priorities, which is based on bulletin board focus groups (BBFGs) with service providers, community members, researchers and policy makers. The BBFGs, like the current synthesis paper, were a component of the “Research with a Purpose” project. 3 Remis et al., 2010 4 PHAC, 2010 5 Remis et al., 2010; Suksomboon et al., 2007 6 PHAC, 2010 7 Mustanski et al., 2011 8 Feldman, 2010 9 Feldman, 2010 10 Feldman, 2010; Mustanski, 2011 11 Nelson and Morrison-Beedy, 2008 12 Nelson and Morrison-Beedy, 2008 13 Steele et al., 2007; Wachsler-Felder and Golden, 2002 14 Steele et al., 2007 15 Steele et al., 2007 16 Franco et al., 2009 2

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Franco et al., 2009 Mane and Aggleton, 2001 19 Mane, 2007; Morrison-Beedy and Nelson, 2004 20 Sherr et al., 2009 21 Johnson et al., 2003 22 Morrison-Beedy and Nelson, 2004 23 Aggleton and Warwick, 2002 24 Selikow et al., 2006 25 Shoveller and Pietersma, 2002 26 Steele et al., 2007 27 Tinsley et al., 2004 28 Richter et al., 2009; Tinsley et al., 2004 29 Richter et al., 2009. 30 Franco et al., 2009; Richter et al., 2009 31 Franco et al., 2009 32 Pratt et al., 2010; Savasata, 2004 33 Dolder et al., 2004 34 Gott, 2005 35 Levy-Dweck, 2005 36 Pratt et al., 2010 37 PHAC, 2010 38 authorsâ&#x20AC;&#x2122; calculations based on HIV diagnoses reported in Remis et al., 2010 39 Pratt et al., 2010 40 Coleman, 2003 41 Savasta, 2004; Conde et al., 2009 42 Gott, 2005 43 Conde et al., 2009; Gott, 2005; Jacobson, 2011 44 Jacobson, 2011 45 Savasta, 2004 46 Conde et al., 2009; Savasta, 2004 47 Savasta, 2004 48 Dolder et al., 2004; Gott, 2005; Martin et al., 2008; Pratt et al., 2010 49 Martin et al., 2008 50 Conde et al., 2009; Henry, 2009; Kearney et al., 2010 51 Rabkin et al., 2004; Vetter and Donnelly, 2006 52 Kearney et al., 2010 53 Vetter and Donnelly, 2006 54 Martin et al., 2008 55 Kearney et al., 2010 56 Vance et al., 2008 57 Jacobson, 2011 18

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

References: HIV Across the Lifespan Aggleton, P. and Warwick, I. (2002). Education and HIV/AIDS prevention among young people. AIDS Education and Prevention 14(3), 263-267. Coleman, C. (2003). Transmission of HIV infection among older adults: a population at risk. Journal of the Association of Nurses in AIDS Care 14(1), 82-85. Conde, D., Silvia, E., Amaral, W., Finotti, M., Ferreira, R., Costa-Paiva, L. and PintoNeto, A. (2009). HIV, reproductive aging, and health implications in women: a literature review. Menopause: Journal of the North American Menopause Society 16(1), 199-213. Dolder, C., Patterson, T. and Jeste, D. (2004). HIV, psychosis and aging: past, present and future. AIDS 18(Suppl 1), S35-S42. Feldman, M. (2010). A critical literature review to identify possible causes of higher rates of HIV infection among young Black and Latino men who have sex with men. Journal of the National Medical Association 102, 1206-1221. Franco, L., Burkhalter, B., de Wagt, A., Jennings, L., Kelley, A. and Hammink, M. (2009). Evidence base for children affected by HIV and AIDS in low prevalence and concentrated epidemic countries: applicability to programming guidance from high prevalence countries. AIDS Care 21(S1), 49-59. Gott, M. (2005). Are older people at risk of sexually transmitted infections? A new look at the evidence. Reviews in Clinical Gerontology 14, 5-13. Henry, K. (2009). Internal medicine/primary care reminder: What are the standards of care for HIV-positive patients aged 50 years and older? Current HIV/AIDS Reports 6, 153-161. Jacobson, S. (2011). HIV/AIDS interventions in aging U.S. population. Health & Social Work 36(2), 149-156. Johnson, B., Carey, M., Marsh, K., Levin, K. and Scott-Sheldon, L. (2003). Interventions to reduce sexual risk for human immunodeficiency virus in adolescents, 1985-2000: a research synthsis. Archives of Pediatric and Adoloscent Medicine 157, 381-388. Kearney, F., Moore, A., Donegan, C. and Lambert, J. (2010). The ageing of HIV: implications for geriatric medicine. Age and Aging 39, 536-541. Levy-Dweck, S. (2005). HIV/AIDS fifty and older: a hidden and growing population. Journal of Gerontological Social Work 46(2), 37-50

Morrison-Beedy, D. and Nelson, L. (2004). HIV prevention interventions in adolescent girls: What is the state of the science? Worldviews on Evidence-Based Nursing 1(3), 165-175. Mane, P. (2007). HIV prevention, gender and sexual health: forging the links. International Journal of Sexual Health 19(3), 47-52. Mane, P. and Aggleton, P. (2001). Gender and HIV/AIDS: What do men have to do with it? Current Sociology 49(6), 23-37. Martin, C., Fain, M. and Klotz, S. (2008). The older HIV-positive adult: a critical review of the medical literature. American Journal of Medicine 121, 1032-1037. Mustanski, B., Newcomb, M., Du Bois, S., Garcia, S. and Grov, C. (2011). HIV in young men who have sex with men: a review of epidemiology, risk and protective factors, and interventions. Journal of Sex Research 48(2-3), 218-253. Nelson, L. and Morrison-Beedy, D. (2008). Sex partner type and condom use in African American adolescent mothers: a literature review. Journal of Child and Adolescent Psychiatric Nursing 21(4), 213-219. Oâ&#x20AC;&#x2122;Brien, K., Wilkins, A., Zack, E. and Solomon, P. (2010). Scoping the field: identifying key research priorities in HIV and rehabilitation. AIDS and Behavior 14, 448-458 PHAC (Public Health Agency of Canada). (2010, July). HIV/AIDS Epi Updates. Surveillance and Risk Assessment Division, Centre for Communicable Diseases and Infection Control. Pratt, G., Gascoyne, K., Cunningham, K. and Tunbridge, A. (2010). Human immunodeficiency virus (HIV) in older people. Age and Aging 39, 289-294. Rabkin, J. McElhiney, M. and Ferrando, S. (2004). Mood and substance use disorders in older adults with HIV/AIDS: methodological issues and preliminary evidence. AIDS 18 (suppl 1), S43-S48. Remis, , R.. Swantee, C. and Liu, J. (2010). Report on HIV/AIDS in Ontario 2008. Ontario HIV Epidemiologic Monitoring Unit. Richter, L., Sherr, L., Adato, M., Belsey, M., Chandan, U., Desmond, C., Drimie, S., Haour-Knipe, M., Hosegood, V., Kimou, J., Madhavan, S., Mathambo, V. and Wakhweya, A. (2009). Strengthening families to support children affected by HIV and AIDS. AIDS Care 21(S1), 3-12. Savasta, A. (2004). HIV: associated transmission risks in older adults â&#x20AC;&#x201C; an integrative review of the literature. Journal of the Association of Nurses in AIDS care 15(1), 50-59.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers

Selikow, T., Flisher, A., Mathews, C. and Ketye, T. (2006). Media messaging: a synthesis of lessons from the literature to inform HIV prevention amongst young people. Journal of Child and Adolescent Mental Health 18(2), 61-72. Shoveller, J. and Pietersma, W. (2002). Preventing HIV/AIDS risk behaviour among youth. AIDS and Behavior 6(2), 123-129. Sherr, L., Mueller, J. and Varrall, R. (2009). Evidence-based gender findings for children affected by HIV and AIDS â&#x20AC;&#x201C; a systematic overview. AIDS Care 21(S1), 83-97. Steele, R., Nelson, T. and Cole, B. (2007). Psychosocial functioning of children with AIDS and HIV infection: review of the literature from a socioecological framework. Journal of Developmental & Behavioral Pediatrics 28, 58-69. Suksomboon, N., Poolsup, N. and Ket-aim, S. (2007). Systematic review of the efficacy of antiretroviral therapies for reducing the risk of mother-to-child transmission of HIV infection. Journal of Clinical Pharmacy and Therapeutics 32, 293-311. Tinsley, B., Lees, N. and Sumartojo, E. (2004). Child and adolescent HIV risk: familial and cultural perspectives. Journal of Family Psychology 18(1), 208-224. Vance, D., Struzick, T. and Masten, J. (2008). Hardiness, successful aging and HIV: implications for social work. Journal of gerontological Social Work 51(3-4), 260-283. Vance, D., Struzick, T. and Russell, T. (2007). Spiritual and religious implications of aging with HIV: a conceptual and methodological review. Journal of Religion, Spirituality & Aging 19(3), 21-42. Vetter, C. and Donnelly, J. (2006). Living long-term with HIV/AIDS: exploring impact of psychosocial and vocational domains. Work 27, 277-286. Wachsler-Felder, J. and Golden, C. (2002). Neuropsychological consequences of HIV in children: a review of current literature. Clinical Psychology Review 22, 441-462.

AIDS Committee of Toronto (ACT) Research With a Purpose: Synthesis Papers