Research with a Purpose: Stigma, Mental Health and HIV Across the Lifespan
Stakeholder Report
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
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© AIDS Committee of Toronto, 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.
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Stakeholder Report: Stigma, Mental Health, HIV Across the Lifespan Themes and issues emerging from bulletin board focus groups with community members, service providers and researchers
Background and introduction At a retreat for ACT staff held in 2009, staff identified new health promotion priorities – stigma, mental health and HIV across the lifespan – that would guide and inform the agency’s work during the new Strategic Plan 2010-2015. The exercise to identify the health promotion priorities was informed by the results of a consultation process that ACT implemented earlier that year. The process was designed to help ACT staff and the organization as a whole reflect on their work, and identify and prioritize urgent or emerging issues. It included a survey of ACT’s community (volunteers, service users, people living with HIV, supporters, and people affected by HIV, etc.), a staff survey, and focus groups with donors. “Research with a Purpose” (RWP) is a project to build understanding of the health promotion priorities among ACT’s staff, and support their program development efforts related to the priorities. RWP included the preparation of synthesis papers on each of the three health promotion priorities, an environmental scan of how stigma, mental health and HIV across the lifespan may have been taken up by HIV/AIDS organizations elsewhere and bulletin board focus groups (BBFGs) with service providers, community members, policy makers and researchers.1 The RWP team organized two BBFGs – one for service providers and community members (n=12) and the other for policy makers and researchers (n=8). Each focus group took place over three days in November 2011. We designed the BBFGs to gather ideas, perspectives and suggestions from stakeholders on what the health promotion
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A BBFG is a form of online focus group which begins with a structured discussion guide, but where the discussion evolves over a set period of time as participants post their initial responses to a bulletin board and respond to the content posted by other participants and follow-up questions posed by the focus group facilitator.
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priorities may mean for HIV programs and research. In the remainder of this report, we discuss the themes, issues and points of interest emerging from the focus groups.
Mental health Participants in the BBFG identified the role of ASOs in mental health issues to comprise facilitating access by people living with HIV to appropriate services (e.g., through case management), service coordination, and helping people living with HIV to recognise or build their psychosocial assets in response to mental health issues (e.g., working with people living with HIV to help them adapt in a positive way to any mental health issues affecting them). Collaborations with other agencies and service providers may be particularly crucial. Through collaboration, ASOs would be better able to refer people living with HIV to competent sources of care and treatment, which would also expand the circle of care beyond ASOs. ASOs can also strengthen the scope of their work on mental health by working with other agencies, healthcare providers and affected communities to develop a strategy on mental health and HIV. ASOs have staked their reputation on developing programs and services that recognize how social determinants affect health. On the other hand, established clinical approaches to mental health may not be primarily concerned with the social determinants. By collaborating with other stakeholders to develop a strategy on HIV and mental health, ASOs would help to ensure that stakeholders understand and respond to mental health issues within a framework that attends to the social determinants and acknowledges the limitations of the current mental health systems. Focus group participants also suggested that ASOs should focus on depression, stress, anxiety and addictions, which may affect the broadest number of people living with HIV. Though various cognitive impairments are associated with HIV, some focus group participants suggested either that cognitive impairment was outside the professional scope of ASOs, or that cognitive impairments should not be lumped with core mental health issues such as depression. Nonetheless, they acknowledged that counsellors in ASOs need consistent access to training and skills development for ASOs to fulfill the role they (participants) outlined. Ongoing clinical supervision (by regulated mental health professionals) was identified as one example of training and skills building. Participants warned that ASOs do not have a role in administering drug therapies or in diagnosing mental health conditions. However, one participant suggested that ASOs should explore the possibility of having licensed professionals (e.g., occupational therapists, licensed social workers if not already available on staff, or psychiatrists) offer services from ASOs on a regular basis (e.g., one day per week). Other participants indicated that ASOs may
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have a role in screening people living with HIV for likely mental health issues, as opposed to diagnosis. This arrangement would make mental health services available in settings with which people living with HIV are already familiar, improve their access to mental health services, and make referrals and follow-up care easier to manage. The general point underlying those suggestions is that collaboration with existing mental health specific organisations would enhance the capacity of those organizations to better serve people living with HIV. In relation to research that ASO may support, or for which ASOs may advocate, focus group participants drew attention to the lack of reliable estimates of the prevalence of mental health issues among people living with HIV in Canada. It is widely acknowledged that certain conditions (e.g., depression) may be more prevalent among people living with HIV (or population groups most affected by HIV) than among the general population. Moreover, people who have been diagnosed with certain mental illnesses may have a diminished capacity to assess their risks for HIV infection or implement riskreduction strategies. However, in the absence of reliable estimates of various mental health conditions among people living with HIV, it would be difficult for ASOs and other stakeholder agencies to appropriately determine whether services were optimally available. Focus group participants also identified the self-care needs of ASO staff as another issue that suffers from a lack of informed discussion. This gap may in fact reference a few related issues. First, many people who work in ASOs are themselves HIV-positive and, to the extent that HIV is associated with particular mental health challenges, staff themselves may be struggling with mental health issues. Second, even though counselling services are available through ASOs and other health agencies, staff may be reluctant to access services from organizations and service providers with whom they already have a professional relationship. Third, ASO staff work in an environment where many service users and other people living with HIV experience significant health challenges. Therefore, the work environment may itself be a source of stress. Another possible area of research identified by participants relates to the effectiveness of various interventions. Community sites are ideal for developing, implementing and evaluating how and why specific interventions may work in such settings, with different types of people living with HIV. Community sites could also help determine best practices that focus on intersection of mental health and HIV.
Stigma Focus group participants suggested an approach to stigma reduction efforts that focuses simultaneously on engaging the wider community (e.g., people, population segments and institutions not normally associated with HIV) and those involved in delivering services to people living with HIV (i.e., ASO staff). AIDS Committee of Toronto (ACT) Stakeholder Report: Stigma, Mental Health, and HIV Across the Lifespan
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Regarding the former, participants suggested that ASOs need to raise their profile and, by extension, the profile of HIV among a much broader cross-section of the community than has been done previously. This would also entail enlisting allies who have not been involved or associated with HIV issues, and focussing stigma reduction on institutions and sectors that may perpetuate stigma (e.g., the education system, the justice system, the private sector, the media, and the policy community). In terms of the latter (i.e., the primary constituents), participants recognize that some of the people most closely associated with the organized response to HIV (i.e., people who work in ASOs) may themselves be a source of stigmatizing beliefs, attitudes and behaviours directed against people who are living with HIV. Organizational systems that enable staff, volunteers, and service users to identify and address stigma may strengthen the work of ASOs in responding to stigma. ASO staff and volunteers need to build their capacity for self-reflection about HIV and people living with HIV, design and deliver programs and services that do not perpetuate or entrench stigma, and think creatively about stigma and how to address it. In addition to focussing on their staff, ASOs should also demonstrate more concerted efforts to engage people affected by HIV. This means raising awareness, building resilience and otherwise supporting the networks that include family members, lovers, and other affiliations of people living with HIV (e.g., their community and religious affiliations). Focus group participants articulated three principle reasons for expanding the scope of community engagement and stigma reduction beyond the immediate boundaries of people infected with and affected by HIV. First, given that stigma often arises from and through pre-existing prejudices and discrimination, the expanded approach would address the pre-existing and long-standing systemic and structural antecedents of HIV stigma. Second, such efforts would normalize HIV-related stigma reduction in the same way that the discourse on stigma associated with mental health has evolved in recent years, and in the same way that the concept of harm reduction is increasingly understood as a broader health and social justice issue. Finally, expanding the scope of community engagement would also be useful in addressing stigma as a barrier to HIV prevention, testing and treatment access. Participants offered specific suggestions about how ASOs may proceed with a renewed focus on stigma. They suggested: (1) that new social media presented opportunities for creatively engaging a broad audience in stigma reduction; (2) a leadership role for people living with HIV in developing new approaches to stigma reduction, and that new strategies and approaches should be informed by lived experiences of people living with HIV; (3) that concerted efforts to address stigma require collaboration among ASOs,
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support from umbrella organizations such as the Canadian AIDS Society (CAS), and leadership from government; and (4) efforts to increase access of people living with HIV to community resources will also indirectly diminish internalized and experienced stigma. Focus group participants also cautioned that people living with HIV are not necessarily helpless in the face of stigmatizing attitudes, beliefs and behaviours. How people experience, manage or resist stigma may depend on their access to resources and privilege. Therefore, groups of people who already experience social injustice or marginalization in other forms may be less able to manage stigma than other groups precisely because marginalization entails lesser access to social resources and diminished social status. Therefore, specific stigma reduction programs or initiatives should not be the same for all people living with HIV. Still, it was suggested that stigmareduction ought to be a core feature of regular support services for people living with HIV. Focus group participants suggested four areas where research is currently needed. First, they suggested that a need to understand stigma in different settings which, in the context of ACT’s work, relates to how stigma emerges among different communities. Second, they suggested that research should examine how people living with HIV manage stigma, which would identify the assets and vulnerabilities that stigma reduction initiatives may tap or address. The third issue for research is really about compound stigma (i.e., to understand how systemic inequalities drive stigma). Finally, they called for new research to identify best practices in stigma reduction.
HIV across the lifespan The “HIV across the lifespan” concept refers to delivering a range of services across different agencies that seamlessly address the needs of people living with HIV and people affected by HIV along a continuum of life stage transitions. Focus group participants suggested that an “HIV across the lifespan” approach to programs and services would improve service coordination among ASOs and other health and social service organizations to better accommodate the changing needs of people living with HIV, and achieve holistic care without duplication. For example, an “HIV across the lifespan” approach to the content and delivery of services may be beneficial to ensuring a healthy transition from adolescent to adult care for youth. Currently, HIV-positive children attend a hospital-and community-based clinic until they are adolescents, after which they are expected to access services at ASOs that serve an adult population. However, many adolescents find the transition difficult, which may negatively affect their ability to manage their health. As a way of organizing services, “HIV across the lifespan” would entail greater coordination between child and adolescent programs, on one hand,
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and adult programs on the other, just like it would a greater degree of coordination among the regular ASO adult programs. “HIV across the lifespan” may also be a useful lens for responding to some of the health and HIV-related needs and challenges associated with how everyday life unfolds over time. For example, issues experienced by women who are living with HIV may arise in relation to specific aspects or stages of their life – issues of pregnancy, childbirth and parenting; their role as caregivers; their role as spouses; and issues related to functioning in the workplace. These issues may require different types of interventions, rather than a single program for women that cannot effectively accommodate an appropriate spectrum of needs and responses. The concept of “HIV across the lifespan” should apply to HIV prevention efforts as well. In other words, for optimal effectiveness, the content and delivery of HIV prevention programs should be appropriate to the lifecycle or lifestage characteristics of the populations to be served. If not properly conceived or implemented, the “HIV across the lifespan” approach to service provision could result in a plethora of programs that inefficiently attempt to address needs. Therefore, focus group participants suggested that, for services to be designed and delivered effectively and efficiently, a comprehensive needs assessment would have to be conducted prior to implementing this new approach to service coordination and provision. In addition, the needs of HIV-positive service providers should be taken into account in order to mitigate the stress associated with their dual role as people living with HIV and service providers, and help them maintain a healthy balance in those roles. Participants cautioned that instituting an “HIV across the lifespan” approach to programs and services would be an enormous undertaking that would require cooperation among all ASOs. The involvement and cooperation of government funders would also be mandatory, because the concept likely entails a change in policy (rather than merely a change in the way programs are defined and offered). Policy makers and researchers in particular were concerned about the practical application of the concept. In short, though the concept seems theoretically to be a more efficient way to think about services, efficiency is not necessarily guaranteed. As far as focus group participants were concerned, research is needed to address certain knowledge gaps related to “HIV across the lifespan”. For example, interventions that focus on life-stage transition among people living with HIV (e.g., adolescence to adulthood, work to retirement) would need to be developed and tested. More generally,
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“HIV across the lifespan” may be understood as a new model of care, but there are probably other competing models of care. Therefore, in the short run research should not focus specifically on whether or how “HIV across the lifespan” may work, but should focus more generally on understanding and evaluating new models of care.
Intersection of mental health, stigma and HIV across the lifespan Participants in both focus groups stated the importance of acknowledging and addressing the intersection of these three health promotion priorities. It was noted that each priority has a relationship with the others, often compounding the stressors and challenges experienced by individuals and communities. HIV stigma has been shown to negatively impact the health and wellbeing of individuals at different stages of their lifespan, and affects their communities as well. There is also the stigma experienced due to the presence of a mental health condition. For people living with HIV, the experience of transition periods over a lifespan may generate concerns or challenges associated with the other health promotion priorities. Specifically, certain age, mental health or specifically HIV-related milestones may bring on new experiences of stigma and compound the challenges that people face. Mental health issues also have implications for stigma and the ‘HIV over the lifespan’ framework. Those living with some mental health conditions may experience stigma based on their mental health experience, or their mental health may impact how they manage life-stage transitions. Some recommendations for addressing the intersection of these health promotion priorities include developing an inter-sectoral model of care designed to offer a more holistic, client-centred approach. Such a model could include supports that change to meet needs associated with life-stage changes, and address how experiences of stigma and mental health issues may change across people’s lifespan (e.g., assessments/reassessments as needs change, social supports, and skills development). In other words, the focus and content of these various supports and interventions would evolve to meet specific needs across the lifespan of people living with HIV and people otherwise affected by HIV. If stigma, mental health and HIV across the lifespan are intersecting priorities, then it is important to understand and respond to the antecedents of the intersection. Some participants advised that, though ASO support programs have a history of responding to the needs of individuals, ASOs should also work towards effecting social change at the community level or systemically. In other words, helping people address their individual
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challenges (e.g., lack of access to nutritious food) should be complemented by initiatives to address systemic or structural determinants (e.g., implementing or advocating for programs and policy to address household food insecurity as a systemic or structural issue).
AIDS Committee of Toronto (ACT) Stakeholder Report: Stigma, Mental Health, and HIV Across the Lifespan