2.I Create an Epidemiological Profile

We created a Community Services Assessment (CSA) in Our Town, Our State, USA. The purpose of this CSA was to determine what resources were available for AI/AN individuals living with HIV/AIDS. First, we went to the Our State website which directed us to the Our County Department of Health. Under “Health Information”, there was a link to epidemiological and surveillance information regarding HIV/AIDS. From the information provided under “Any County HIV & AIDS Statistics” we created an epidemiological profile including the following:

• Any County is among the ten counties in Our State with the highest reports of both HIV and AIDS (>30 per 100,000)
• Any County is one of the nine counties in Our State with the highest number of people living with both HIV and AIDS (>300 per 100,000)
• Race/Ethnicity of those living with HIV in Any County through July, 2007:

• HIV Adult Transmission Modes in Any County through July, 2007:

• HIV Pediatric Transmission Modes in Any County through July, 2007:

• Ages of those living with HIV in Any County through July, 2007:

• Race/Ethnicity of those living with AIDS in Any County through July, 2007:

• AIDS Adult Transmission Modes in Any County through July, 2007:

• AIDS Pediatric Transmission Modes in Any County through July, 2007:

• Ages of those living with AIDS in Any County through July, 2007:

Based on the preceding data collected in Any County through July, 2007:

• AI/AN Population with HIV and/or AIDS
• 750 are male, 214 are female
• Among males, 50% report that mode of transmission was injecting drug use and 50% report that mode of transmission was men who have sex with men.
• Among females, 50% report that mode of transmission was injecting drug use and 50% report that mode of transmission was heterosexual contact.
• The mode1 of age-category among AI/AN males living with HIV is 20-29.
• The mode of age-category among AI/AN females living with HIV is 30-39.
• 75% of the AI/AN population living with HIV categorize themselves as “urban”.

¹ Mode is a statistical term and refers to the category/unit most often found.

Click the following link to return to Module 5: CSA Groundwork.

2.II Defining the Bigger Question
After the completion of our epidemiological profile, we looked to the profile to help us determine areas in which we should concentrate in order to be the most effective. American Indians and Alaska Natives who reside in Any County and are living with HIV/AIDS are our focus population. The epidemiological profile provided very little empirical data regarding this population. While the issue of primary and secondary research is addressed later in this example, the data about AI/AN populations contained in the epidemiological profile did provide us with a starting point to determine which questions we could develop about the community that might assist us in conducting the CSA. The epidemiological data told us that 550 AI/AN individuals are currently living with HIV in Any County and 414 AI/AN individuals are currently living with AIDS in Any County.

Given data gathered on the routes of transmission in the focus population, questions that we wished to answer in our Community Services Assessment included:

• Are there readily available venues for access to condoms?
• Is there easily accessible, culturally competent information regarding condom use?
• Is there culturally competent information about risk factors for HIV/AIDS available in the community?
• Are cultural biases against GLBT (gay, lesbian, bisexual, transgender) and/or Two-Spirits, HIV/AIDS prominent in the community?
• Are there any AI/AN elder associations within the community who would be willing to work with the young people using traditional methods?
• Are there any tribal organizations or community based organizations serving rural AI/AN populations in the community?
• Do the tribal health systems serving the community provide substance abuse counseling, HIV and/or AIDS counseling and information, and other services that may help our target population?
• Are there “safe havens” within the community through which clients can receive unbiased, culturally appropriate, and confidential information and services?
• Are there any culturally competent substance abuse out-patient clinics in the community?
• Are there any culturally competent substance abuse in-patient clinics in the community?
• Do any of the substance abuse clinics integrate HIV/AIDS information?
• Do those who report injecting drug use as the mode of transmission have other cultural/demographic commonalities?

Click the following link to return to Module 5: CSA Groundwork.

As our focus audience consisted of AI/AN individuals who reside in Any County and are living with HIV/AIDS; we decided that our lead agency should be one which: (a) primarily serves AI/AN populations (b) understands and utilizes culturally relevant methods of communicating, teaching, counseling, and providing information and (c) has a working knowledge of the needs of those living with HIV/AIDS. We previously worked with a community-based organization named Natives Helping Natives and were aware of their commitment to working with AI/AN communities. We met with the Executive Director and staff of Natives Helping Natives and provided an overview of the need for a Community Services Assessment. Natives Helping Natives agreed to provide the leadership responsibility for the collaborative that we were forming. In a brainstorming session, we also identified and engaged the following people and organizations:

• Any County Health Department
• AI/AN Community HIV/AIDS activists
• United Way of Any County
• Medical Directors and direct service providers from the surrounding tribes
• The executive directors of the two community-based organizations that serve Native communities in Any County
• Clergy from the church that has a large AI/AN population in the community
• Native elders living both on and off the reservation
• The Any County AIDS Coalition
• Three members of our focus population

The Executive Director of Natives Helping Natives divided the group into committees during the first meeting. Committees formed and staffed were:  

• Services Identification Committee – charged with identifying service organizations that should be included in our assessment and identifying gaps in service within the community
• Cultural Competency Committee – charged with determining whether the available service organizations understand and respect the cultural differences that are critical to working with AI/AN populations
• Fiscal Committee – charged with determining all costs associated with conducting the CSA and developing a budget for the entire period of time allotted to this task
• Capacity-Building Committee – charged with identifying and assisting organizations that might be able to serve the native HIV/AIDS community if provided with capacity and infrastructure building
• Data Gathering Committee – charged with collecting surveillance and anecdotal data (both primary and secondary) over the period of time that it takes to complete our CSA and keeping the Partnership abreast of all new trends
• Fund-Raising Committee – charged with identifying possible funding sources for the conduction of our CSA

The committees each meet once a month and then all the committees came together for a Partnership Planning Meeting once a month during which reports were shared. During all meetings, the Partnership evaluated the CSA process by reserving time at the end of each meeting to review successes and challenges as well as problem solving. Challenges to the success of the committees’ work were brought before the full Partnership and all members worked to resolve them.  New items of business were addressed and additions/revisions/deletions to the charges of the committees were made by the full Partnership using a consensus model.

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Early on, we recognized that it costs money to conduct activities necessary to develop a CSA. Our Fiscal Committee was charged with determining the amount of funds we needed to properly conduct our CSA. The Fiscal Committee determined that we needed $ 70,000 to conduct the type of Community Services Assessment that we wanted. We then turned to our Fund-Raising Committee which had been charged to identify potential funders. The Fund-Raising Committee provided a list of potential funders (for both money and/or in-kind services). Members of the full partnership then wrote grants and networked with potential funders and other institutions so that we were successful in our fund-raising activities as indicated below:

Click the following link to return to Module 5: CSA Resources.

Secondary Research: Our Data Gathering Committee found that a Community Services Assessment had been conducted for Any County approximately 15 years ago. The Data Gathering Committee also collected current needs assessment information from various HIV/AIDS organizations/providers in Any State that serve Any County. Findings from a review of the data included:

• A total of 100 documents were reviewed. Of those, only 60 had information related to services. 
• None of the documents were specific to AI/AN populations
• Fifty (50) of the documents contained data or findings
• The major patterns that emerged from the documents were
• HIV/AIDS education should increase
• HIV/AIDS services and substance abuse services should be integrated
• Models of stages of change in sexual and drug behavior should be increased
• Counseling and testing services of local health departments showed services to Hispanic, African Americans, and Caucasians. Sample sizes of AI/AN and other races/ethnicities were so small that they were not listed
• Agencies/Organizations Providing Prevention and Intervention Services were:

Need for Primary Research: Due to the lack of secondary data with regard to AI/AN populations in general and AI/AN populations and HIV/AIDS specifically, it was agreed that the gathering of primary data was of the utmost importance for the CSA. The emphasis would be on gathering information from the focus population through the use of culturally appropriate methods. We needed to collect data about risk factors and behaviors as well as service access issues. This data helped us better define the needs of our focus population.

Click the following link to return to Module 5: Primary and Secondary Research.

Through the use of secondary research illustrated above, an overall portrait of services available to our target audience emerged. The research unearthed major gaps in services. The gaps served to inform the focus of the CSA and prompted the primary question: “What are the service gaps in HIV Prevention Intervention Services for AI/AN individuals living with HIV/AIDS in any county and how can they be filled?” Recall that the secondary research did not address issues and concerns related to AI/AN populations. Thus, primary research among our target audience was the appropriate method by which we began to answer the question.

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A. Selecting the Methodology: The University of Any State, Department of Sociology agreed to work with us on collection of primary data. Doctoral students will receive course credit for their work on this project. The Partnership looked at various methods for collecting primary data and agreed upon the use of Talking Circles, Key Respondent Interviews, Focus Groups, and Convenience Sample Surveys. What is the focus of the assessment- would strengthen who the intended respondents are, and the specific information the NA is designed to gather.

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B. Sources of Data:

a. Recruitment of participants for data collection was diverse. Fliers were placed in bars, restaurants, beauty salons, barbershops, clubs, community centers, community based organizations and the like which are frequented or used by members of the AI/AN population. Advertisements were placed in AI/AN newsletters and websites, GLBT newsletters and websites, clinic and health department newsletters (both tribal and county). Gatekeepers of the communities were asked to spread the word within their communities.
b. Doctoral students from the University of Any State, Department of Sociology developed all surveys, focus group moderator guides, key respondent interview tools, and Talking Circle facilitator guides. Dr. Data, Research Director for the Partnership and the full Partnership vetted all surveys and guides. Surveys and guides were field tested under the direction of Dr. Data.
c. The surveys, key respondent interview tools and focus group questions where piloted with a small but diverse group of local AI/AN community members.
d. AI/AN community members were trained as interviewers and facilitators and conducted all interviews and facilitated all focus groups and Talking Circles. The training provided was culturally appropriate and scientifically rigorous.
e. In keeping with culturally appropriate methods of communication, interviews were face-to-face unless the participant requested another method.
f. Data-sharing agreements were in place between the Partnership and the University of Any State prior to beginning any activities. It was determined by all parties that the Partnership would full ownership of the data.
g. Since the data were to be owned by the Partnership rather than the University, the data collection tools did not have to go through the University’s Institutional Review Board.
h. Data were input and analyzed by doctoral students from the University of Any State, Department of Sociology.
i. Findings were disseminated at the monthly meetings of the Partnership and members decided upon further dissemination based upon issues of confidentiality and cultural concerns.

Click the following link to return to Module 5: Sources of Data and Data Collection Protocols.

C. Data Collection Protocols: Protocols for the research included:

a. Hiring Interviewers: Interviewers met stringent criteria including a background check. At least three references were provided by each interviewer applicant and all were checked. Interviewers were members of our focus population. Interviewers had at least a high school diploma and a working knowledge of the Native American cultures in the region.
b. Training of Interviewers: Interviewers completed a two day training that was conducted by Dr. Data, a sociologist specializing in community-based research. Dr. Data served as the Research Director of the Partnership. Curriculum for the training was a manual written by Dr. Data.
c. All surveys were developed by the doctoral students at the University of Any State, Department of Sociology. Surveys were then vetted by Dr. Data and the Partnership. 
d. All Talking Circle and moderator guides were developed by the doctoral students at the University of Any State, Department of Sociology. Guides were then vetted by Dr. Data and the Partnership.

The Informed Consent Form was a critical component of the research process. Its use was required prior to participation in all surveys, focus groups, Talking Circles, and key informant interviews.  Unless the participant signed this form the research could not be conducted. The Informed Consent Form informed the participant of the research process and the participant’s part in the process.  It addressed the issues of purpose, benefits, procedures, confidentiality, risks and benefits, rights as a volunteer, and the participant’s agreement. The Informed Consent Form also addressed the compensation given to the participant. Please feel free to download a template of the Informed Consent Form.

Click the following link to return to Module 5: Sources of Data and Data Collection Protocols.

The Partnership conducted both qualitative and quantitative research among the focus population in Any County, Any State from March 1 through September 30, 2010. The goal of the research was to answer the question, “What are the service gaps in community HIV Prevention Intervention Services for AI/AN individuals who reside in Any County and are living with HIV or AIDS and how can they be filled?” 
 
Surveys: Using a convenience sample methodology, face-to-face interviews were conducted with 200 participants. All respondents were AI/AN individuals living with HIV or AIDS.  Of the 200 respondents, 150 were male and 50 were female. The average age of interview respondents was 27 years. Educational attainment among the respondents ranged from some high school to professional and post-graduate degrees, with the majority reporting that they had some college. Findings from the surveys included:

• 85% of the respondents believed that there is a need for AI/AN culturally competent prevention intervention services in Any County
• 55% reported hesitancy in accessing services currently available as a result of feelings of distrust of government sponsored services
• 60% of the respondents reported that they are uninsured and thus could not afford private treatment options
• 90% believed that HIV prevention intervention services should be integrated with substance abuse prevention intervention services
• 42% of the respondents believed that Native/traditional methods of treatment should be integrated with the western medical model
• 48% of the respondents reported that current HE/RR services were not responsive to AI/AN populations

Focus Groups, Talking Circles, and Key Informant Interviews: A total of 50 key informant interviews, 5 Talking Circles with 10 participants each, and 5 focus groups with 8 participants each were conducted. The 140 participants were equally divided: 70 males and 70 females.  All participants were members of our focus population. Using qualitative software, data were analyzed and several themes emerged.

• There was an urgent need for Outreach services among the AI/AN population
• Culturally competent services were critical to engaging the focus population
• Access to services was largely dependent upon the ability to pay for services – more services for those unable to pay was crucial

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The following resources are currently available in Any County, Any State.

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Gap Analysis: A review of the primary research, secondary research and the epidemiological profile illustrated both the comprehensive HIV prevention intervention met needs in Any County as well as those unmet needs. Comprehensive HIV prevention intervention met needs are:

• Culturally competent resources for health education and risk reduction (HR/RR) targeting Hispanic males who have sex with men (MSM) and African American women having sex with men were in greater supply than resources for other focus populations
• There were no health education and risk reduction services for AI/AN.
• Throughout Any County there were interventions such as counseling, testing, referral, partner counseling, and STI services.  Ostensibly these services were for all focus populations, but data showed that there were challenges with regard to cultural appropriateness, access, and methods of delivery that may not fully meet the need for some focus populations such as AI/AN and Asian Pacific and Pacific Islanders.
• Entry level providers of risk reduction were abundant throughout Any County.
• Native health and social service resources in Any County do not provide HIV-related services.

Comprehensive HIV prevention intervention unmet needs include:

• Ongoing services for AI/AN individuals living with HIV are needed
• Enhanced case management and outreach activities for AI/AN populations were needed
• Culturally competent resources for priority populations other than Hispanics and African Americans were sorely needed
• Both financial and human resources must be increased
• HIV prevention intervention efforts should be integrated with substance abuse prevention intervention efforts and with sexual responsibility efforts

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