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ENGAGING COMMUNITIES AND INSTITUTIONS IN HIV PREVENTION RESEARCH Claudia L. Moreno, Ph.D., MSW, Associate Professor, Fordham University
ENGAGING COMMUNITIES AND INSTITUTIONS IN HIV PREVENTION RESEARCH
Claudia L. Moreno, Ph.D., MSW, Associate Professor, Fordham University
HIV Research in Communi=es of Color
• Most of HIV research occurs in communiBes of color
• Engaging communiBes represent a huge challenge for researchers
• ParBcipaBon by ethnic minoriBes in health-‐related research is a concern because it creates health dispariBes
• Ethical engagement of communiBes of color present challenges
Health Dispari=es
• HIV related dispariBes are worse in HIV than any other health related condiBons
• The rate of new AIDS cases is 9.7 Bmes higher for Blacks and 3.3 Bmes higher for Hispanics than for Whites, represenBng the largest HIV-‐related health disparity for both of these racial/ethnic groups
The Na'onal HIV/AIDS Strategy for the United States (NHAS).
Key goals of the NHAS
• To reduce the number of new HIV infecBons, • increase access to care and improve health outcomes for people living with HIV, and
• reduce HIV-‐related health dispariBes.(1)
• “ NHAS has served to steer a conversaBon about HIV in the direcBon of the strategic steps that individuals, communi=es and the NaBon need to take to achieve the Strategy’s goals.”
Priori=es of the NHAS for the Coming Year
• Building and strengthening new collabora=ve partnerships at the state, tribal, and local level – Part of the reason for the broad support for the Strategy was due to the high level of community engagement in its development
• Bringing new people into the fight against HIV in the United States and building a Community Ac=on Toolkit – We’re empowering communi=es to implement the Strategy where they are. Through community organizing tools and online resources, everyday people can take ownership of the Strategy and apply it to their local communiBes.
• Defining common metrics for measuring our progress • Streamlining efforts to minimize administra=ve burden
while ensuring accountability for public resources.
• Adopt community-‐level approaches to reduce HIV infec9on in high-‐risk communi9es. – “In order to reduce dispariBes among groups, we need effecBve approaches to reduce the risk of HIV transmission not only at the individual level but at the community level.” (p. 34)
– “HIV is o[en only one of many condiBons that plague communiBes at greater risk for HIV infecBon. In many cases, it is not possible to effecBvely address HIV transmission or care without also addressing sexually transmi]ed diseases, substance use, poverty, homelessness and other issues” (p.35)
How?
• Establish pilot programs that u=lize community models – “tesBng community-‐level approaches is needed to idenBfy effecBve intervenBons that reduce the risk of infecBon in high prevalence communiBes.”
• Engage communi=es to affirm support for people living with HIV: Faith communiBes, businesses, schools, community-‐based organizaBons, social gathering sites, and all types of media outlets should take responsibility for affirming nonjudgmental support for people living with HIV and high-‐risk communiBes.
How can be define community?
Some DefiniBons – There is no standard definiBon of community – Even though community is determined largely by shared tradiBons and values, communiBes are not staBc and may accommodate mulBple and even conflicBng interpretaBons of their own tradiBons and values
– SBll this definiBon will change and we should be open to the inclusion or mulBple perspecBves or be]er yet to let communiBes to define themselves (imaginary communiBes, transnaBonal communiBes, internet communiBes)
Models of Community Engagement • Consulta=on / public par=cipa=on models – These are usually employed by public authoriBes to elicit views and perspecBves from a wide range of community members on needs, issues or responses to proposals.
• Asset-‐based / social economy models – These focus on recognizing the value of the physical assets and human resources of a community, and try to maximize the community control over, and benefit from, these assets.
• Community Democracy models – These set out to extend local democracy into the community by, in effect, establishing an informal community Ber of government.
• Iden=ty based models – These are typically developed by black and ethnic minority communiBes, and disability groups as a means of finding and expressing a voice
• Learning-‐led and popular educa=on models – These focus primarily on building and supporBng the skills and confidence of community members
• Service development models – Many community groups and organizaBons have grown from providing direct responses to gaps in public service provision or to idenBfied local needs.
• Community organizing – A considerable force in the US, community organizing involves building coaliBons of acBon involving churches, unions and community groups to establish a strong power base to challenge the policies of companies or other insBtuBons, o[en leading to the establishment of a wide range of community controlled services and resources.
• Regional and na=onal networks – There is an important need for communiBes across the US to link with each other, share experiences, and feed percepBons into the policy process.
A New Paradigm
• Most Community researchers are adopBng a RelaBonship paradigm
• “community consultaBon” • Address the context in which communiBes understand risks and benefits and how individuals give consent
Engaging Communi=es for Collabora=on in Research Projects
• Engaging communiBes in research goes beyond community parBcipaBon; it is the process of working collaboraBvely with relevant partners who share common goals and interests.
• The researcher has to build authenBc partnerships, including mutual respect and acBve, inclusive parBcipaBon; power sharing and equity; mutual benefit in the collaboraBve iniBaBve.
Community Models of Engagement Research
• Par=cipatory Research Approach – This was a model was iniBated by the Canada InsBtute of Health Research (2) and was iniBated by indigenous and aboriginal groups that demanded community members to be acBve parBcipants at every stage of the research process.
– These guidelines and others recommend the inclusion of cultural knowledge in research under mutually agreed terms, and with the guidance of the knowledge holders in the community.
Cont. Models
• Community-‐Based Par=cipatory Research (CBPR) was coined by Israel, Schulz, Parker, and Becker (3) to emphasize the parBcipaBon, influence and control by non-‐academic researchers in the process of creaBng knowledge and change. This model is similar to the PRM but has the disBncBon of the Social Change approach.
• Drawing on the tradiBons of acBon research, parBcipatory acBon research, and parBcipatory rural appraisals
CBPR different from tradi=onal research
• Involve communiBes at the level of Input-‐ communiBes iniBate research ideas and projects
• Process: communiBes remain inBmately engaged throughout data collecBon, analysis, and interpretaBon phases
• Outcome: communiBes play significant roles in mobilizing the knowledge a]ained in CBPR projects for social change
Community-‐Based ParBcipatory Research (CBPR)
CBPR
Community IniBaBon
Capacity Building
Varied Research Methods
Join Data Ownership
Social AcBon
Community Relevance
Ethical Review
Process Oriented
Ethical Review
Case Study: Engaging CommuniBes
• Target PopulaBon: – LATINAS WITH HIV AND HISTORIES OF PARTNER ABUSE
Gaining Entry
• Includes gaining trust, • mutual respect, • effecBve communicaBon, • respect for diversity, • culture learning, • respect for culture of the sekng • the development of an acBon agenda
How
• One avenue is the face-‐to-‐face visit, • Going in person to the research site, • Shake hands, • A]end meeBngs, and/or acBviBes held at the agency
• Gekng familiar with the agency, the community and start to develop rapport and trust with the gatekeepers
Community Advisory Boards
• CAB have emerged as one strategy for establishing partnerships between researchers and host communiBes to promote community consultaBon in socially sensiBve research.
• They originated in HIV research • They help to keep the research process grounded in the experiences of the community
What CAB does? • Their funcBons vary according to the design of the project:
– One of the big roles is that CABs help to ground the research in he experiences of the community
– Assist in the design of research protocols, IRB, recruitment, retenBon, data analysis, data disseminaBon and advocacy
– CAB can assist the researchers to further shape the IRB and address ethical issues, and procedures not being addressed previously
– CAB can assist the research team to make sure that the materials used in the HIV intervenBon research are sensiBve to the target populaBon, culture is respected and it delivers the message.
– CAB’s collaboraBon goes beyond current research projects, can give ideas for future research projects
Model
CAB
Researchers
Community
Recruitment of ParBcipants • Recruit recruiters who are part of the community, speak
the language, share the culture, and are similar in gender may be instrumental in recruiBng the target populaBon.
• Researchers recruiBng parBcipants must be aware of the cultural norms and cultural scripts (role that marianismo and machismo plays in every area of their lives. Some LaBna women, in accordance to marianismo, might feel that they need “permission” of their spouse, boyfriend or even other family members to parBcipate in an acBvity that may be deemed strange and perhaps even threatening to the family’s image and security.
• Face-‐to-‐face recruitment works best with some diverse groups
TIPS • Define “community” in appropriate and meaningful ways • Understand the potenBal “risks” and benefits for research
in communiBes and with community members • Obtain broad community input in all phases of research • Respect communiBes as full partners in research • Establish appropriate review mechanisms and procedures • Facilitate and return of benefits to communiBes • Foster educaBon and training in community-‐based research • Provide sufficient funds for research and encourage-‐
community researcher partnership
Quinn (2004)
Recruitment in CommuniBes • Spend some Bme in the area, observe, walk, immerse
yourself in the community before you start your project • Recruit parBcipants by engaging gatekeepers in the
recruitment process • Have a recruiter on site. Do not rely on posters. Some
groups do not respond well to this method and prefer a person who can explain about the study
• Use cultural values that reflect the populaBon (personalismo, simpaBa)
• RecruiBng the undocumented presents addiBonal challenges.
• Immerse yourself in the community, do not overdress or under-‐dress
Ways to Encourage Par=cipa=on • Explain the study in a way that is culturally and gender appropriate
• Use people skills, improves connectedness and trust • Emphasize on the benefits of the study and their contribuBon (to improve services for other women, we want their opinion and experBse)
• Financial incenBves –is a way of showing respect for their Bme and effort)
• Provide child care during the study • Package informaBon for health related ma]ers and not just HIV
Cont. Ways to Encourage Par=cipa=on
• HIV intervenBons should be tailor to specific groups-‐(e.g. Don’t assume all Dominican women are the same)
• Be willing to do “kitchen research” – Research should be embedded within the sekngs and community context in which these parBcipants live, work, and access care.
• CreaBng an atmosphere of a true partnership with the community-‐based service providers, customizing the approaches so that the intervenBon strategies are consistent with their values, and those of the clients they serve.
Community-‐Based Process for Research: A review of Ethics
• Concerns: • CommuniBes creates challenges for IRBs • When doing CBR very few IRBs ask for community, or society-‐level risk or benefits and issues of social jusBce
• Some researchers have quesBoned whether community-‐based review processes are be]er situated to understand actual risks and benefits, as compared with insBtuBon-‐based IRBs
• The challenge is that community-‐based review boards are not regulated or mandated
Consent Process
• Use language that is easy to understand • Have a person to translate consent forms into the language of the target populaBon. The language should reflect the country (ies) represented. Used a translator that captures meaning not words
• Some cultural groups such as LaBna women are not comfortable saying “no” and will give passive assent to appointments. Explore their willingness to parBcipate and stress that parBcipaBon is voluntary.
Data Analysis • QualitaBve study: once the themes of the study emerged from the data , I went back to the community and presented the themes in a community meeBng that included, women in the study, agency workers, women with HIV, etc. We had a conversaBon and helped me to re-‐shape, re-‐defined the themes.
• It is important to conBnually and systemaBcally examine and collect emerging data to be able to make design and study adaptaBons while preserving scienBfic integrity.
Results and then what…
• “don’t be a helicopter researcher” • Once I finished the study, went back to the community and presented the results of my studies with the community
• Based on the results of the study, the agency decided to implement a support group for women with HIV with histories of abuse
• Researchers have a compromise and a commitment with the community and use the results to take some acBon and put our results to work and improve services not just to sit on a journal!
Summary • CommuniBes are essenBal in addressing HIV needs and
services • ConfronBng dispariBes requires a mulBpronged approach
and involves addressing paBents’ socioeconomic situaBons, barriers to access to care, substance abuse, cultural norms, sexual pracBces, and co-‐infecBons.
• Community engagement requires Bme and ethical standards
• Researchers have a compromise and a commitment with the community and use the results to take some acBon and put our results to work and improve services not just to sit on a journal
Some References • (1)
h]p://www.aids.gov/federal-‐resources/policies/naBonal-‐hiv-‐aids-‐strategy/nhas.pdf
• (2) h]p://www.cihr-‐irsc.gc.ca/e/documents/ethics_aboriginal_guidelines_e.pdf • (3) Israel B, Schulz A, Parker E, Becker A.(1998). Review of community-‐based
research: assessing partnership approaches to improve public health. Annu Rev Public Health, 19(1):173–194.
• Fricker, et al., (2007). Ethical dilemmas in community-‐based parBcipatory research: RecommendaBons for insBtuBonal review boards (IRBs). Journal of Urban Health, 84(4), 478-‐493.
• Le, H., Lara, A., Perry, D. (2008). RecruiBng LaBno women in the US and women in Mexico in post-‐partum depression prevenBon research. Archives of Women’s Mental Health, 11, 159-‐169.
• Moreno, C. L. (2007). The relaBonship between culture, gender, structural factors, abuse, trauma, and HIV/AIDS for LaBnas. Qualita've Health Research, 17(3), 340-‐352.
• Pardasani, M., Moreno, C. L., Forge, N. R. (2010). Cultural competence in HIV, Chapter III. In C. Poindexter (Ed). Social services and social ac'on in the HIV pandemic: Principles, methods and popula'ons. Hoboken, NJ: Wiley & Sons.
• Quinn, S. C. (2004). ProtecBng human subjects: The role of community advisory boards. American J. of Public Health, 94(6), 918-‐922.
Thank You!
