Reaching LGBTQ Communities and Engaging them in Care...Learning Objectives 4 By the end of this...
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Reaching LGBTQ Communities and Engaging them in Care Benjamin D Perkins, MA, MDiv November 12, 2014
Transcript of Reaching LGBTQ Communities and Engaging them in Care...Learning Objectives 4 By the end of this...
Reaching LGBTQ Communities and Engaging them in Care
Benjamin D Perkins, MA, MDiv November 12, 2014
Presenter
Presentation Notes
Bio
Continuing Medical Education Disclosure Program Faculty: Benjamin Perkins, M.Div. Current Position: Assoc. Director for Community Engagement | The Fenway Institute Disclosure: No relevant financial relationships. Presentation does not include
discussion of off-label products.
Program Faculty: Coco Alinsug Current Position: Outreach Manager, Fenway Health Disclosure: No relevant financial relationships. Presentation does not include
discussion of off-label products.
It is the policy of The National LGBT Health Education Center, Fenway Health that all CME planning committee/faculty/authors/editors/staff disclose relationships with commercial entities upon
nomination/invitation of participation. Disclosure documents are reviewed for potential conflicts of interest and, if identified, they are resolved prior to confirmation of participation. Only participants who have no conflict of interest or who agree to an identified resolution process prior to their participation were involved in this CME
activity.
Webinar Agenda
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Review objectives Community engagement: Definitions and mapping the
essential components Three examples: PrEP Community Forum, Coming Out
& Keeping the Faith Event, and LGBT Focus Group Other considerations Summary
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Presentation Notes
Bio
Learning Objectives
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By the end of this webinar, participants will be able to: 1. Define community engagement as it applies broadly
to all communities and specifically to health care 2. Describe specific community engagement activities
that will help you learn more about the needs of LGBTQ people in your community
3. Identify a systematic approach to building community partnerships with LGBTQ-led initiatives and organizations
What is Community Engagement?
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Interfacing: relationship building with stakeholders Mutuality & Humility Supportive environment Occurs over an extended period of time Aids in identifying barriers and facilitators to implementing
the community’s uptake of your organization’s activities
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Broadly speaking, community engagement consists of activities designed to build relationships (via interfacing) with constituencies that are part of your community. For the purposes of this training, we are focusing specifically on the LGBTQ communities, but it could be any community of interest. The interface consists of several elements: Mutuality & humility: when working to build bridges into a community, mutuality is key to fostering respect and trust, and an important corollary is humility, i.e., recognizing that we have as much to learn from a community as we have to contribute, and that they are interconnected. Community engagement helps to create a supportive environment that’s necessary for any outreach and programmatic success to take place. It helps to lay the groundwork for future activities and help to increase the likelihood of their success. Effective community engagement requires an investment over an extended period of time; too often, organizations conduct “one-off” activities without paying attention to a key element of trust building—consistency over time. Consequently, organizations end up fostering mistrust and a perception that they are colonizers rather than true partners. When due diligence is done, community engagement aids in helping an organization identify specific barriers and facilitators to programs. This is achieved by a systematic approach that we will review shortly.
Tools for Implementing Community Engagement Good Participatory
Practice (UNAIDS, AVAC) Stakeholder Engagement Toolkit for HIV Prevention
Trials (FHI360)
Recommendations for Community Engagement
in HIV/AIDS Research (HANC, NIAID)
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Today, we will focus on the Recommendations document that was developed by CP, with input and support from DAIDS I am indebted to DAIDS for their work in providing a community engagement frameworks that details the core elements of community engagement community………and while the focus of this webinar is engagement in care, the foundational aspects of community engagement are the same, regardless of the purpose of engagement (trials recruitment, versus program implementation, versus engagement in care). This document focuses primarily on CAB development since that’s what our networks and site rely on but it doesn't exclude other forms of community engagement – in fact encourages them.. And before I continue, please understand that I’m using CAB a bit generically knowing that in some cases they are Community Advisory Group or like with the HPTN, Community Working Group. In reality they all function similarly so for ease I’m just using the term CAB The goals of this document are to: Foster stronger partnerships between staff and community
Not easy to define •Views and perspectives are widely divergent •Not homogeneous •May have competing interests and priorities •May not always fit a single definition
Population in and for which the activity is being conducted
Key stakeholders, political leaders •Often included in educational and outreach activities •Can be informed of research plans, goals, and the potential impact
Support of this broader community •Essential to the ongoing success of the healthcare outcomes and/or clinical research process •Partnerships within any given region
Community
Who Comprises a Community?
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Finding a common definition of “community” is not as simple as one might think, as the views and perspectives of what constitutes community and the role community should play in the research process are widely divergent. In reality, communities are not homogeneous and may have competing interests and priorities; they may not always fit a single definition. In healthcare we can define community by the population that we’d like to reach.
What Form Does Community Engagement Take?
• A group of community members that regularly meets with research/program staff at various levels
Community Advisory Board or
Group
• Health Fair, Town Hall Meeting, Seminar or Educational Forum
Community or Stakeholder Forum
• Facilitated session to gather information on a specific topic or from a specific group of individuals
Focus Group
• A larger group meeting to seek input/advice, or gather information Consultation
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Definition of CE: very simply put, the interaction between the healthcare organization entity (staff, org, etc.) and key stakeholders in the community. That interaction and exchange of information can take many forms… What forms does CE take? CAB – we use this term broadly. Many of these terms are interchangeable and really just refers to the group that works together with the research/program team or staff at the network or site level. At TFI, our CAB has been in existence for 15 years. In the field of research, CABs come out of the days of AIDS activism, ca. 1990. Community forum (examples to follow) Focus group: we have developed a standard protocol for population-based focus groups that we implement on an as-needed basis. Thus far we’ve conducted focus groups for women, mothers of adolescent women, all with the purpose of ascertaining community acceptability of HIV prevention research. Consultation: as part of our efforts to develop effective anti-HIV microbicides for MSM and transgender women, we conducted a community consultation co-sponsored by the Microbicide Trials Network.
Principles of Community Engagement Set Clear Goals
Learn About Community
Develop Cultural Competency
Foster Transparency
Build Partnerships and Trust
Provide and Promote Capacity Building
Maintain a Long-Term Commitment
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Community engagement must meet the needs of the populations and/or communities in the health center service area or [those who are affected by the research] Strengthening the community’s role and capacity to actively participate in the healthcare services and/or research process.. It is important to learn about the community – the economic conditions, political leadership, demographic trends, history (overall and with regard to research) and prior experiences with engagement activities (PUT INFO IN HERE ABOUT HOW YOU LEARN ABOUT COMMUNITY?—reaching people who aren’t “out’….the hard-to-reach.) Knowledge of the community’s predominant attitudes, beliefs and practices will be helpful to ensuring more effective and respectful communication and approaches to reaching out to the community – and will lead to culturally responsive engagement The community should be encouraged and able to express itself openly independently throughout the engagement process and the research team needs to be open and forthcoming about its research plans and activities Partnering with community stakeholders is necessary to building trust and ultimately creating change. It is important to identify both formal and informal leaders in the community and to establish both informal and formal ties Sustainable community engagement can only be achieved by identifying and mobilizing the community and developing the capacities and resources within the community itself. Community engagement requires an ongoing, long-term commitment by the research organization and its partners
What is a Community Stakeholder?
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Any individual or entity that has a vested interest in your organization and its activities. Examples of them include: CABs Concerns citizens/key opinion leaders CBOs Local political leaders The best way to identify stakeholders is to begin talking to individuals who are part of the community you’re looking to engage. A typical end result is the discovery of networks of stakeholders.
What are some of the Possible Results of Poor Community Engagement? Mistrust Perceptions of Tokenism Duplication of efforts Creation of an “Echo
Chamber” Poor recruitment/retention
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When you don’t engage communities appropriately, that is, when you don’t do your due diligence in applying the principles of community engagement, all sorts of negative consequences are possible. I decided to have a little fun with this slide and include a picture of Mary Tyler Moore’s character Mary Richards…..Mary’s claim to infamy was that she threw disastrous parties, and poor community engagement is not unlike throwing a very bad party. Mistrust: the community is likely to view your institution (or you) with mistrust. “Drive-by engagement” Tokenism: community members may feel that they were being used by your organization for the purposes of meeting its goals, and that the voices and wishes of the community weren’t truly respected and honored Duplication of efforts: when stakeholders don’t communicate with each other, the risk for duplication of efforts increases, and in a time of diminishing resources this is particularly troublesome. Echo chamber: when organizations don’t engage stakeholders effectively, they miss out on important input and run the risk of believing that their perspectives are best. Put more simply, organizations begin to believe their own hype. Poor recruitment/enrollment/retention: it should go without saying that ineffective engagement can result in poor enrollment into programs.
Some Examples
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Now for some examples to ground the theory in practice.
Example #1: PrEP Community Forum
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Identified community stakeholders Held face-to-face meetings and conference calls to
discuss feasibility of holding a forum Mapped out an agenda Developed advertising and dissemination strategy (i.e.,
getting the word out) Held community forum Conducted survey to determine forum’s impact
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Staff brainstormed about who should be a part of the event Had meetings to discuss PrEP, its potential impact on the community, perceptions and misperceptions, and what goals we hoped to achieve. Determined who we thought would be ideal to discuss their experiences with PrEP—serodiscordant couple, men of color, someone considering PrEP. Dissemination strategy: using community stakeholders who participated in the planning process, we were able to get the word out within their social and professional networks. Critical to determining the forum’s impact was conducting a survey of attendees. We developed a simple tool with several questions.
Lessons Learned
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Involve stakeholders early in the planning and development process to maximize community ownership and investment in the event.
Panels with community members help to add a level of real-world credibility to the event.
Using multimedia platforms (e.g., looping videos, powerful quotes displayed) aid in ensuring that attendees are engaged in a variety of ways that speak to them.
Example #2: Coming Out & Keeping the Faith Event
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Began with conversations within the Connect to Protect (C2P) coalition regarding the spiritual needs of LGBT youth.
Identified youth and LGBT-affirming clergy to participate in event.
In consultation with youth, identified “neutral venue” and developed questions for panelists.
Lessons Learned
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LGBT youth were essential in defining the terms of engagement (e.g., insisting that a neutral venue was key).
A sustained effort is required to build relationships between youth and clergy. Therefore, a key recommendation was that the event should take place at more regular intervals (e.g., quarterly instead of annually).
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We originally thought that the event should be held in a church. However, the feedback from youth was that the church could be traumatic for some individuals and that it would be better to hold the event at a neutral site and invited clergy to participate in that space. Sustained effort: this goes back to the point about community engagement requiring a sustained effort to build trust.
Example #3 Facilitating a Focus Group
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Health center organization expressed interest in conducting a needs assessment of how to make their organization more LGBT-friendly.
In consultation with the Education Center, we developed a series of questions for the group.
Leadership reached out to providers and asked if they had LGBT patients who would be willing to participate.
Providers invited LGBT patients to participate in the focus group.
Lessons Learned
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Because providers were culturally competent, they were able to identify LGBT patients who were open to participating in a focus group.
Youth voices are essential to ensuring cultural competency across age demographics. There were no young individuals who participated in the focus group, despite active recruitment, so more work is needed to ensure youth participation.
While participants didn’t agree on how to make the organization more LGBT welcoming, there was general agreement that something needed to be done.
A Few Words about Getting the Word Out!
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In a resource-limited environment, getting the word out without spending a lot of money is essential to an activity’s success. The key thing to remember is that if you are engaging the community at key points (i.e., planning phase), then the best way to get the word out is to let them spread the word through their various personal and professional networks. Other suggestions include: blog posts, flyers, social media apps.
How do we measure success?
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Process measures (e.g. # of events, # of attendees). Outcome measures (e.g., increase in knowledge,
increase in participation/enrollment, improved health outcomes).
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Outcome measurements: pre-post test
Other considerations
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1. Materials/collateral 2. Earned media 3. Testimonials 4. Sponsorship/collaboration
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Developing materials is an important component of engaging with communities. The earlier you involve communities in the process, the better, because they provide real-world perspective that will help you in creating materials that have impact and are culturally relevant. Earned media, that is, coverage of your activities that’s free, is invaluable. Using blogs, social media, other organizations’ websites, community pages in LGBTQ papers, local access television are all ways to get the word out. Testimonials: community members are often the best spokespersons for your organization, and their impact is often viral. Sponsorship and collaborations are important ways to building relationships with communities; they show a more significant investment in the work because they requirement resources (e.g., money, time, talent, etc.)
Final Thoughts
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Researchers love data, communities love stories. Community engagement requires telling a compelling
story. Ultimately, community engagement is a verb!
Resources
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NIAID (2009): Recommendations for Community Involvement in NIAID HIV/AIDS Clinical Trials Recruitment: https://www.niaid.nih.gov/about/organization/daids/Networks/Documents/cabrecommendations.pdf
AVAC: http://www.avac.org FHI360 (2012): Stakeholder Engagement Toolkit for
HIV Prevention Trials: http://www.fhi360.org/en/HIVAIDS/pub/res_HIVprevtrials_stakeholder_toolkit.htm
Acknowledgements
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Rona Siskind, NIAID Jim Maynard, HVTN FHI360
