REACH PEOPLE WITH AIDS/HIV

Describe your general goals and expected outcome. What do you want to do?
Why is it important? What methods will you use? What question(s) do you hope
to answer?

The AIDS epidemic has affected much of Sub-Saharan Africa, Ethiopia not being
an exception. HIV/AIDS is a highly stigmatized disease and although the presence
of stigma is widely acknowledged, practical methods of intervention are rarely
documented or analyzed for outcome and effectiveness. Literature reviews
suggest that combating stigma is at the bottom of AIDS program priorities. Stigma
intervention is further complicated by its very local iterations, making it difficult
to address effectively without an understanding for the demographical, cultural,
or social intricacy of each community. This project will address three main
questions: 1) What is the general understanding of HIV/AIDS and its associated
stigma in urbanized Addis Ababa? 2) What factors contribute to caretakers’
decisions to get themselves or their children tested for HIV? 3) How does stigma
affect employment opportunities? The data collection will include both qualitative
and quantitative methods encompassing structured interviews and surveys. In
conducting the research, in-country support will be provided by the Stand for
Vulnerable Organization (SVO), whose aims are empowering vulnerable
community members (especially women, children, and the elderly) by providing
different forms of grassroots support, including HIV prevention and family
economic development. The proposed outcome of this project is to gather and
analyze data, producing an informative report for SVO to address issues of stigma
associated with HIV. Moreover, the findings will be integrated in an educational
curriculum that will be piloted in tandem with the data collection.

Background & Long Term Objectives

What is the overall goal of this research? Why is it important? What are the “big
questions” in your discipline that you expect to address? How does your proposed
research relate to the work of others in this field?

The Human Immunodeficiency Virus (HIV) attacks CD4+ T-cells compromising its
host’s immune system and leaving it vulnerable to opportunistic infections (1).
HIV is contracted through the transfer of body fluids (blood, breast milk, semen,
vaginal fluids, rectal mucous) with an infected person (4). As the disease
progresses, individuals not receiving effective treatment will eventually develop
Acquired Immune Deficiency Syndrome (AIDS) (1). Globally, there are currently 34
million people living with HIV/AIDS with 2.7 million new infections and 1.8 million
deaths in 2010 (3). Although Sub-Saharan Africa accounts for 12% of the world
population, nearly 68% (22.5 million) of all people infected with HIV live in the
region (8). Of those infected, nearly half were infected before the age of 25 (7). In
Ethiopia as of 2007, 980,000 people are HIV positive and it is predicted that the
number will continue to increase (2).While the AIDS epidemic is globally
recognized and measures are being taken to encourage prevention and increase
universal access to treatment, the matter of HIV/AIDS stigma and discrimination
has largely remained unresolved for over 25 years (5). What research has been
done has found that HIV-related stigma impedes measures like �universal access
(treatment), HIV testing, and the effectiveness of national responses programs
(5). HIV/AIDS is so highly stigmatized in some regions that it hinders many from
acknowledging their status or seeking treatment. Even with the influence of
stigma on HIV/AIDS prevention and control, it continues to be at the bottom of
AIDS program priorities(6). A study conducted in Ethiopia evaluated basic
knowledge of HIV/AIDS across the population, measuring experiences and
consequences of stigma (7). Although the article brings forth evidence for the
existence of stigma in Ethiopia, it acknowledges that more needs to be done to
document and study stigma related intervention. My research questions will
encompass similar questions evaluated in previous studies to reconfirm their
outcomes and create a background for the development of an educational
program. Working closely with my faculty mentors and community partner, my
general aim is to understand HIV/AIDS related stigma in Addis Ababa. My project
will focus on three types of information categories. 1) Evaluate the general level
of HIV/AIDS knowledge and assess associated perceptions, barriers, and
justifications for the stigmatization of those at risk for HIV/AIDS. 2) Examine the
factors that influence a caretaker’s decision to get themselves and their child
tested for HIV/AIDS. 3) Assess the employment challenges experienced by
members of the community, the types of job and vocational training
opportunities available, and what interventions they discern to be beneficial.
Information gained from investigating these questions will be used to develop an
educational program targeting HIV/AIDS stigma and barriers for employment—
influenced by stigma—that exacerbate spirals into poverty. My inspiration for this
project stems from working with Dr. Sumedha Ariely and Dr. Kathryn Whetten on
an extension of the Positive Outcomes for Orphans (POFO) study. Through my
involvement with POFO I was introduced to Stand for Vulnerable Organization
(SVO). SVO is an organization that aspires to promote self-reliance through the
promotion of education in sound health and finance practices. The organization
has been in partnership with POFO for nearly two years and the director, Mr.
Misganaw Eticha is a knowledgeable, well connected, and respected member of
the NGO and Ethiopian community. The ideal outcome of the project would be to
present SVO an analysis of the data in a report, while also having run one or two
pilot tests for the stigma education program. The curriculum may be further
developed and fully implemented when it reaches that stage. The curriculum will
be malleable, so it may be adapted as circumstances change. The issue of
employment in conjunction with stigma can be addressed by the analysis of the
beneficial resources cited by interviewees. This may be transferred into a
resource guide for members of the community seeking employment.

Specific Aims & Short Term Objectives

What are the specific research questions that you will ask this summer, and what
methods will you use to address them? What are your hypotheses?

Previously conducted studies on HIV-related stigma have found that HIV/AIDS

stigmatization indisputably encumbers efforts to combat the HIV/AIDS epidemic.
Literature reviews on stigmatizing behaviors, internal stigma, and awareness of
HIV/AIDS in Ethiopia reinforce the existence of stigma and explain how it is
embodied in rural and urban Ethiopian communities. Even though stigma is
recognized, little has been done or documented in the realm of effective methods
of intervention. In this project, we seek to add to the data on stigma and barriers
to compile community specific data for analysis in developing an intervention.

My specific aim is to conduct research to assess the basic knowledge of HIV/AIDS

of children and adults to identify markers between factual knowledge and
associated stigma. These markers may help address whether depth of knowledge
correlates with decreased stigmatization and what fears or misconceptions
perpetuate stigma. In relation to questions around stigma and knowledge, We will
also get information on what factors people consider when deciding whether to
get tested or not. For example, what influences caretakers in their decision to get
themselves and their children tested? Is it a concern of access or anticipated
stigma? How does testing behavior connect to the relationships, if at all, between
knowledge and stigma? The desired outcome is to use the data collected to
develop an effective education curriculum for stigma prevention and help curb
behaviors and assumptions that reinforce stigma. This study will also be focusing
on the economic prospects of study participants. What is their employment
status? Has stigma impeded their opportunity for employment? How can these
challenges be resolved? As stated in the general goals above, this data is needed
and valuable for providing SVO information that can allow them to develop
targeted interventions to effectively reduce barriers to HIV knowledge, stigma
and labor.

The design of our study employs qualitative and quantitative research methods.
For quantitative analysis, We will be using standardized instruments, some of
which are used currently in Ethiopia and have good validity and reliability. We will
also be developing qualitative questionnaires and structured interviews to collect
more in-depth information on perceptions, values, behaviors, and attitudes.
While the sensitivity of topics related to HIV can be an obstacle in collecting data,
my measures and procedures are closely guided by my community partner, and
are those found to work both ethically and effectively, within these settings. We
are not asking or seeking information on HIV status directly, and HIV knowledge
and stigma related questions are ones that we should be able to gather sensitively
and appropriately. There are three distinctions within the target sample group.
For the study I want to interview children ages 6-13, young adults ages 14-17, and
adults. There will be formal consent forms for adults and assent forms for children
as per IRB protocol. My projected 7 week timeline is structured to be a three
phases study. 1) The survey structure and questions will be derived from existing
question sets pulled from the Positive Outcomes for Orphans study conducted at
Duke at the Center for Health Policy and Inequalities Research as well as other
questionnaire toolkits from the literature on stigma related research. It will also
include questions that we will design under the mentorship of my faculty
mentors, community partner, and referencing literature. We plan to do 3
interviews a day (a person from each age group) for three weeks. Although his is
realistic goal, it is dependent on how the data collection will progress once in the
field. Depending on how the data collection is going, We expect to be entering
data in tandem to the collection process. Noting the importance of privacy and
confidentiality as detailed by the IRB, We will conduct in- home interviews or
negotiate space accommodation with SVO for interviewing purposes. We will also
be getting trained by my community partner and their Ethiopian interviewers on
conducting interviews appropriately for those cultural settings. During this time,
We will also be entering and analyzing the data for SVO. 2) The next phase is to
conduct a pilot test of the proposed education curriculum. Since there are two
components of the curriculum (material adopted and material created based on
the data) the pilot test could also be run, while information is simultaneously
being collected and entered. This would mean piloting pieces of the curriculum
adopted from the best practices noted in literature while interviews are still being
conducted. The curriculum will resemble the methods used in the most effective
interventions on stigma available, adjusted to accommodate difference in age,
level of awareness, and other yet undiscovered nuances specific to the
community. 3) The final phase is the deliverables for the research project. The
data collected from the questionnaires will be entered and analyzed, presented to
SVO in a report that addresses the results of some key questions. In addition, the
recommendation will be made for the kinds of labor related interventions and
training opportunities perceived as most beneficial for a community experiencing
stigma. A final specific goal would be to have a curriculum that has been piloted
that could continue to be developed by SVO. We are eager to maintain flexibility
in the timeline as we are aware that variability is highly likely.

The proposed outcome for this study is to produce a pilot method of

intervention for HIV-related stigma that deters the isolation and discrimination of
infected persons. If successful, this may encourage individuals to get tested, seek
treatment, and openly take more preventative measures. It would also serve the
mission of SVO to educate and empower the vulnerable in the community by
reducing the risk of infection. The positive influence this study may have in
decreasing stigma in the community could be shared by SVO with other
organizations via circulation of the curriculum.

References cited

1.Basic Information on HIV and AIDS. Center for Disease Control and Prevention.
Center for Disease Control and Prevention , 03AUG2011. Web. 14 Feb 2012.

2. Epidemiological Fact Sheet on HIV and AIDS. World Health Organization. World
Health Organization, OCT 2008. Web. 15 Feb 2012.
<http://apps.who.int/globalatlas/predefinedReports/EFS2008/full/EFS2008_ET.p
df>.

3.Global Summary of HIV/AIDS epidemic 2010. World Health Organization. World

Health Organization, 01DEC2010. Web. 14 Feb 2012.

4. How do you get HIV or AIDS? AIDS.gov. AIDS.gov, 20JUN2011. Web. 17 Feb
2012. <http://aids.gov/hiv-aids- basics/hiv-aids-101/overview/how-you-get-hiv-
aids/index.html>.

5. MacQuarri, Kerry, and Traci Eckhaus. HIV-related Stigma and Discrimination: A

Summary of Recent Literature. United Nations AIDS. United Nations AIDS,
AUG2009. Web. 15 Feb 2012. <http://data.unaids.
org/pub/Report/2009/20091130_stigmasummary_en.pdf>.

6. Mahaja, Anish. Stigma in the HIV/AIDS epidemic: A review of the literature and
recommendations for the way forward. National Institute of Health Public Access.
(2008): 1,4,7. Web.16 Feb. 2012.<http://www.ncbi.nlm.nih.
gov/pmc/articles/PMC2835402/pdf/nihms168647>

7. Nyblad, Laura, and Rohini Pande. Disentangling HIV and AIDS S T I G M A in

Ethiopia, Tanzania and Zambi. International Center for Research on Women.
(2003): 10,23,44. Web. 17 Feb. 2012. <http://www.icrw.
org/files/publications/Disentagling-HIV-and-AIDS-Stigma-in-Ethiopia-Tanzania-
and-Zambia.pdf>.

8. Worldwide HIV and AIDS Statistics and Commentary.AVERT HIV and AIDS.
AVERT HIV and AIDS, DEC2010. Web. 15 Feb 2012.
<http://www.avert.org/worlstatinfo.htm>

�Budget Total: 4280.00 pesos

Travel: Airfare Addis Ababa, Ethiopia roundtrip: 1800 pesos

Public transportation to and from community partner: $260 pesos (5 pesos/day)

Food Lodging:

Food: 8pesos/day for 52 days for a total of 420.00.pesos

Addis Ababa: 25 pesos/day for 52 days for a total of 1300.00 pesos

Supplies & Equipment: $500 for interviewing documents, printouts, pilot

implementation costs, and compensation for participants.

Additional funding sources (applied):

Career Center Internship Funding 2500.00

Duke Global Health Institute 5000.00

Duke Center for Civic Engagement 3000.00

Duke Center for International 2500.00

AIDS Society Of The Philippines. The AIDS Society of the Philippines (ASP) is a
leading association of individuals from the government, non-government
agencies, and the private sector, with a common unifying interest in preventing
the spread of HIV and AID.