Research with a Purpose: Addressing ACT’s 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.

In January 2011, the AIDS Committee of Toronto (ACT) initiated the Research with a Purpose (RWP) CIHR-funded project to build ACT’s capacity for program development related to the health promotion priorities. The RWP team includes both research and program staff and is intended 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, and; enhance the link between knowledge development (research, evaluation, and KTE) and program development.

The RWP team produced a series of documents:

    · Research with a Purpose Interpretations: Stigma, Mental Health and HIV Across the Lifespan
    · Stakeholder Report: Stigma, Mental Health, HIV Across the Lifespan
    · HIV-related Stigma: Synthesis Paper
    · HIV and Mental Health: Synthesis Paper
    · HIV Across the Lifespan: Synthesis Paper

Our approach to developing stakeholder report

The RWP team organized two online bulletin board focus groups – 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 focus groups to gather ideas, perspectives and suggestions from stakeholders on what the health promotion priorities may mean for HIV programs and research in Toronto. The report summarizes the themes and issues that stakeholders raised when discussing HIV across the lifespan, mental health, and stigma.

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

Our approach to developing the Research with a Purpose interpretations

Because the Health Promotion Priorities include concepts that are broad and can be approached in multiple ways, the RWP team developed interpretations for each. The interpretations are not definitions, but offer a frame for thinking through mental health, stigma, and HIV across the lifespan that is relevant for ACT staff and community-based organizations.

Each interpretation was reviewed in our online focus groups, and revised to incorporate feedback from our stakeholders.

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

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 RWP 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. 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.

Priority issueExamples of search terms
StigmaHIV, stigma, discrimination, intervention, scale, measure, review, systematic review, meta-analysis, people living with HIV, PHAs
Mental healthmental health, HIV, depression, anxiety, stress, coping, systematic review, review, people living with HIV, PHAs, quality of life, dementia, suicide, mental disorder
HIV across the lifespanHIV, people living with HIV, PHAs, lifespan, aging, children, youth, adults, older adults, adolescents, girls, boys, older men, older women, long-term survivors, lifecycle, review, prevention, services, co-morbid, concurrent

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.

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 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 HIV-related 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.