research with a purpose - stakeholder report

Stakeholder Report

Winston Husbands Jessica Cattaneo

Lydia Makoroka Rui Pires

Jocelyn Watchorn Jessica Whitbread

May 2012

Winston Husbands

Jessica Cattaneo Lydia Makoroka

Rui Pires Jocelyn Watchorn Jessica Whitbread

May 2012

Research with a Purpose: Stigma, Mental Health and HIV Across the Lifespan

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AIDS Committee of Toronto (ACT) Stakeholder Report: Stigma, Mental Health, and HIV Across the Lifespan

© 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

1 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 risk-

reduction 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).

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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 stigma-

reduction 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).

research with a purpose - stakeholder report

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