Addressing the HIV/AIDS Epidemic in Michigan & Beyond: The Importance of Needs Assessment & Context
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This paper reviews HIV/AIDS statistics at international, national and state levels and incorporates findings from focus group interviews with HIV/AIDS educators from the states of Michigan and Indiana. The article provides recommendations for HIV/AIDS education that assesses both needs and contexts of individuals, families, and communities.
Key Words: HIV/AIDS education, needs assessment, context, health care reform
Lenoraann Ryan is Assistant Professor, Department of Human Environmental Science, Central Michigan University, 214 Wightman Hall, Mount Pleasant, Michigan, 48858. Electronic mail may be sent via the Internet to firstname.lastname@example.org.
For approximately the last twenty years, HIV/AIDS has been impacting individuals, their families, and the communities in which we all live and work. The people coping with this disease are our mothers and fathers, daughters and sons, aunts and uncles, wives and husbands, chosen family, and others that we love. Yet, this disease does not equally affect all people: Adolescents, women, gay and bisexual men, and minorities are disproportionately affected by this disease. Therefore, education remains a primary tool for how we address HIV/AIDS (Centers for Disease Control and Prevention, 2002; AIDS Epidemic Update, 2001). It is imperative that Health Care Reform contextualize HIV/AIDS education so that the diverse information needed by individuals and their families as well as policy makers is heard and acted upon in order to slow this global epidemic.
An International & National Overview
An estimated 40 million people are infected with HIV/AIDS worldwide. From the beginning of the epidemic around 1980 to the end of 2001, more than 60 million people have been infected globally. HIV/AIDS is at pandemic levels in sub-Sahara Africa, where it is the leading cause of death (AIDS Epidemic Update, December 2001).
In the United States, approximately half a million people have died of HIV/AIDS during the past two decades; however, the number of people infected every year has remained at about 40,000 for the past several years. By the end of 2000, the number of people who died each year in the United States from HIV/AIDS declined to approximately 15,500. This decline in the death rate is thought to be due to new treatments that prolong life for those with HIV/AIDS. Due to this intervention, over 850,000 people are currently living with HIV infection in the United States (Centers for Disease Control and Prevention, Morbidity and Mortality Report, 1999; Centers for Disease Control and Prevention, 2001).
HIV/AIDS in Michigan
More people are living with HIV/AIDS in Michigan each year. Between the years 1990 to 1996, approximately 1,200 people were newly infected annually with HIV/AIDS in Michigan. The infection rate declined slightly to approximately 825 people in 2000. Today, it is estimated that 15,500 residents of Michigan are living with HIV infection (Michigan Department of Community Health, 2002). Statistics have remained fairly constant from 1996 to 2000 regarding the different ethnic and sex groups who may contract HIV in Michigan, as well as the varied modes of transmission (Michigan Department of Community Health, 2002).
Men outnumber women with HIV or AIDS in Michigan, with 8,090 men and 2,388 women reporting living with HIV or AIDS as of January 2002. This number represents approximately a four to one infection rate of men versus women in the state. For men, the modes of transmission listed from greatest to least are as follows:
- Male-male sex (57%)
- Injecting drug use (14%)
- Male-male sex with injecting drug use (7%)
- Heterosexual (5%)
- Blood recipient (1%)
- Perinatal [in womb] (1%)
- Undetermined (15%)
For women overall, the modes of transmission listed from greatest to least are as follows:
- Heterosexual (39%)
- Injecting drug use (31 %)
- Perinatal [in womb] (3%)
- Blood recipient (1%)
- Undetermined (26%).
Estimates of the number of Michigan residents living with HIV or AIDS as of January 2002 by ethnic background indicate the following distribution (Michigan Department of Community Health, 2002; Centers for Disease Control and Prevention, 2002):
- Black, non-Hispanic= 8,990
- White, non-Hispanic= 5,580
- Hispanic = 470
- Asian = 130
- American Indian = 130.
The number of people in Michigan who have died of HIV-related causes declined by approximately two-thirds between 1995 and 2000 (Michigan Department of Community Health, 2002). The period of sharpest decline was from 1996 to 1997, because of the availability of new treatment regimens, followed by a slight decline in the death rate from 1998 to 2000 (Michigan Department of Community Health, 2002; Centers for Disease Control and Prevention, 2001). This downward trend is also true throughout the nation. The decrease in the death rate does not mean that HIV/AIDS has lessened in severity: HIV/AIDS is still a terminal disease, and—although new treatment options have prolonged life—as of yet there is no cure for HIV/AIDS.
The Role of HIV/AIDS Education
As long as no cure is available, HIV/AIDS education must remain an integral part of sexuality education. Educational efforts need to "fit" the audience and their context in order to provide useful information tailored to their life situations so that they do not become infected or spread HIV. The information being circulated throughout the country by the government, public schools, faith communities, and public health organizations, although improving, still remains inefficient and ineffective.
What are schools teaching in their HIV prevention education programs? The answer is unclear because programs vary widely. In some schools it may be a one-hour program in the eighth grade, while in another school HIV education may be woven throughout the duration of a health class, or throughout many different classes. The qualifications and backgrounds of the people who teach these programs and educate the teachers also vary widely. Teachers, who may or may not have had appropriate training, piece many programs together and often that material is reviewed by a school board or committee for evaluation before it is implemented. Based on the values of the school board and community, schools have some latitude concerning what is presented. Some community advisory committees approve only certain types of programs that discuss abstinence, while others may allow for contraception information to be shared (Centers for Disease Control and Prevention, 2001).
Currently, no national government policies mandate schools to provide certain types of HIV/AIDS prevention education. Federal government recommendations call for sexuality education to stress abstinence, but it should be noted that "abstinence based" education is not abstinence only education, as is often thought (Centers for Disease Control and Prevention, 2001). While the discussion of abstinence is important within a broader curriculum, it should not be the only type of education because it may put individuals at risk who are—or who will choose to be—sexually active. The information that potentially will protect people from HIV infection must be discussed and practiced in order to save lives.
Education & Needs Assessment
Due to the severity of the HIV/AIDS epidemic, and the absence of a cure, education remains a primary HIV prevention tool (American Red Cross, 2001; Green and Kreuter, 1991). However, education is only as good as the needs assessment that precedes it. In 2001, the Centers for Disease Control and Prevention published an "HIV Prevention Strategic Plan Through 2005." The plan states that although we have made advancements in prevention and treatment in the last decade, much remains to be done. The primary goal of the plan is to decrease the HIV infection rate in the United States by half by the year 2005. As stipulated in the strategic plan, the reduction of HIV/AIDS is vitally linked to proper needs assessment, which includes community involvement and partnerships (Centers for Disease Control and Prevention, 2001).
Needs assessment is an important tool for addressing and fitting health care messages to the community being served. The Centers for Disease Control and Prevention plan builds on the knowledge that needs assessment is an important nexus between education and communities (Gilmore, Campbell, & Becker, 1989). It has been emphasized within the health education and promotion field that program and education success depends on involving the community in assessing the needs and addressing them most effectively (Centers for Disease Control and Prevention, 2001, Green & Kreuter, 1991; Gilmore, Campbell, & Becker, 1989). In order to create effective change, both in attitude and behavior relating to our nation's health care and education, attention must be paid to how HIV/AIDS education is being compiled and disseminated to individuals, families, and communities.
Focus Groups on Needs Assessment in HIV/AIDS Education
The remainder of the paper focuses on a qualitative exploration of how HIV/AIDS educators use needs assessment. The study serves as an illustration of the importance of contextual awareness and sensitivity for HIV/AIDS education. Specifically explored are the
- Types of needs assessment used by educators
- Specific needs that educators assess; and
- Contextual factors that have an impact on the implementation of needs assessment.
One of the greatest areas of need in HIV/AIDS education is to understand the role of context. The primary goal of this study was to explore the creation and delivery of HIV/AIDS education using focus groups as the primary methodology (Miles & Huberman, 1994). Focus group interviews seek to create an interchange of thoughts and feelings among participants (Morgan, 1993). The American Association of Sexuality Educators, Counselors and Therapists (AASECT) served as the vehicle for preliminary survey dissemination. All participating AASECT certified sexuality educators in Michigan and Indiana filled out and returned questionnaires comprised of predominately open-ended questions. The information from this phase was then used to create an interview guide for the focus groups. Two focus group interviews with HIV/AIDS educators were conducted with one in Indiana and one in Michigan. Each focus group lasted approximately one and a half hours and contained seven educators who were currently involved in HIV/AIDS education.
Similarities between Indiana & Michigan
Both the Indiana and Michigan educators agreed that the educator was an important factor in the use of needs assessment. They held similar viewpoints regarding the challenge for the educator to be sensitive to the groups they served (context), and the importance of the educator being clear about their own values and attitudes.
The challenge of being contextually sensitive. Incorporating contextual nuances into HIV/AIDS education was viewed as a challenge by both state groups of educators. A member of the Indiana focus group stated:
"...the perfect message may never get to the audience because its not palatable to the school so sometimes you've gotta be politically active a little bit yourself. But you can 't have the philosophy of all or none because your public will have none. You have to decide which battles to fight for. I think that makes our field sort a unique challenge, and it gives me a sort of excitement and energy."
A similar sentiment was also described by a member of the Michigan focus group:
"...it's a challenge I think, (to incorporate contextual and community nuances) both positively and negatively. If you are dealing with conservative political values it's a real pain in the ass to try and tailor your intervention or prevention or research in ways that are not gonna, you know, piss the right wing off...and still get your message across. In other words, it's a challenge because it allows you to grow as an educator, as a researcher....and learn more about a particular community or about a particular group of folks."
The educators agreed that in order to be contextually sensitive, they were often put into a position where they had to take a stand for what they believed to be important.
The educator as an important factor. Indeed, HIV/AIDS education holds many multi-faceted challenges and opportunities. Educators in both focus groups believed the educator to be a key factor in the use of needs assessment and education. Both groups felt that educators needed to be clear with themselves about intrapersonal aspects, such as values. Both groups agreed that not everyone could be an HIV/AIDS educator. They felt that it was important for the educator to explore and realize why s/he is in the area of HIV/AIDS education. As a member from the Indiana focus group stated,
"...I have strong feelings that not everybody can do sexuality education...it does take sensitivity." Similar ideas were shared from the Michigan educators. On member noted, "I go back to the reason why you're doing what you're doing, I think that is important...if you care about what you're doing, part of it (educator sensitivity) will be instinctual, but part can be learned."
Although the groups agreed on the importance of the educator being able to be sensitive, how each state group addressed such issues was very different. On a conceptual level, the two groups had differing frameworks.
Differences between Indiana & Michigan
The Indiana and Michigan educators differed on the types of needs assessment used, and in the specific needs assessed. Upon analysis, it became evident that the Indiana and Michigan groups operated from two differing conceptual frameworks.
The relationship between needs assessment and HIV/AIDS education. A significant difference between Indiana and Michigan existed in the educators' perspectives of the conceptual relationship between HIV/AIDS education and needs assessment. The educators in Indiana held a conceptual idea that needs assessment was a process that could be separated from the HIV/AIDS education process; whereas, the educators in Michigan viewed needs assessment and HIV/AIDS education as much more integrated.
- Indiana. The Indiana educators viewed the needs assessment process as somewhat separate from HIV/AIDS education. As a member of the Indiana Focus Groups noted:
"Needs assessment is a really important concept, and probably something that is not done enough, but sometimes we are not capable of doing it....there is a lot of need for it (needs assessment), but mechanically difficult to do and sort of another type of burden for educators who are scrapped on time and finances to do it."
The Indiana educators, as illustrated, viewed most needs assessment as a very separate and often draining activity to the educator. For Indiana group members, there was an emphasis placed on the utilization of contact persons to do needs assessment. This practice may be a factor that influences the separateness between the educator and the community. By utilizing a contact person, the educators themselves were getting information once removed, thus hindering implicit knowledge of the community and the needs within the community.
- Michigan. In contrast, the Michigan educators viewed needs assessment as a collaborative process with the communities they served. They viewed the two processes as being inextricably linked. The emphasis placed on this linkage was supported by the Michigan educators' view of the role of the community in the needs assessment and HIV/AIDS education process.
The role of the community in needs assessment. Another conceptual framework difference between the Indiana and Michigan focus group members was how the educators viewed the role of the community in the needs assessment process. The educators in Michigan viewed the community as a fully integrated part of the needs assessment process, whereas the educators in Indiana did not share this high level of integration.
- Indiana. The educators in the Indiana focus group viewed the community to be only mildly involved in the needs assessment process. This potential lack of community involvement may relate to Indiana educators' idea that needs assessment does not necessarily have to be a first hand part of the HIV/AIDS education process; therefore, community input may not be as tightly linked to HIV/AIDS education. This suggested that if needs assessment is not directly integrated into the educational process, then community input may also be left out.
- Michigan. The educators in Michigan believed that the community should play an active role in the creation, implementation, and evaluation of needs assessment. As noted by one Michigan member:
"You need to tailor the particular methodology. We tailor the sort of needs assessment based on the noises we hear about down under and then design the collaboration...bottom line...we contextualize it" [the needs assessment]
The Michigan and Indiana educators operated from two different conceptual frameworks; thus, these differing conceptual orientations strongly influenced both the types of needs assessment used, and the specific needs assessed and adjusted for. However, the states were similar in their view of the importance of the educator as a factor that impacted the use of needs assessment. Exploring the similarities and differences between the focus groups allows for a better understanding of HIV/AIDS educators perspectives on needs assessment. Overall, the HIV/AIDS educators all desire the same universal goal: to stop the spread of HIV/AIDS.
The creation and implementation of effective education and prevention of HIV infection is a vital and necessary goal of health care reform. The purpose of this exploratory look at various approaches to HIV/AIDS education was to uncover the impact and influence that differing conceptual frameworks may have on HIV/AIDS education. Focus groups with HIV/AIDS educators in Michigan and Indiana revealed the importance of incorporating the community in the needs assessment process (Centers for Disease Control and Prevention, 2001; 1998; Kurth, 1993; Keeling & Engstrom, 1992; Green & Kreuter, 1991; Gilmore, Campbell, & Becker, 1989; Neuber, 1980).
The findings of the study suggested that educators should assess the communities they wish to ultimately serve. By utilizing needs assessment that incorporates the community members to be served, the voices of the constituents may better be heard and represented. Listening and being aware of those we wish to serve is an important step in education and health care at all levels. Let us never forget that HIV/AIDS affects people and their families.
People living with HIV/AIDS from the very communities that are targeted for education and prevention must be included as needed members of a team to create and implement HIV/AIDS education. This type of community involvement seeks to inform and shape the education to the needs in the community. The information learned from a needs assessment can serve as an avenue of information for sexuality educators and other health care professionals. The study also linked the importance of the HIV/AIDS educators themselves to the needs assessment and educational processes (Keeling & Gould, 1992; Gilmore, Campbell, & Becker, 1989). The findings of this study suggested that educators' own values and beliefs impact HIV/AIDS needs assessment and education. Further research regarding the assessment of the educators' intra-personal conceptual frameworks, as well as their perspectives about personally connecting with the community, is needed.
As noted by the Centers for Disease Control and Prevention's strategic plan, needs assessments and informed community involvement should be a vital and integral part of HIV education programs so that they are as effective as possible in each community (Centers for Disease Control, 2001; Kirkendall & Libby, 1985). Legislators also need to continue to be made more aware of the needs for HIV/AIDS education:
- Needs assessment is a vital step in health care reform. It is an important tool for reducing risk-taking behaviors and thus reducing the spread of HIV.
- Needs assessment can be a powerful, informative tool for education and health care at all levels and support for families who dealing with a chronic illness.
- Needs assessment may serve to make legislators more aware of the needs in their communities so that they can make more informed policy decisions regarding HIV/AIDS.
Each of these points has contextual nuances, and these should not be ignored or underestimated. Taking time for trust building among members of the community being served is one of the most vital and needed steps in health reform in the area of HIV/AIDS education.
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