The Role of Social and Behavior Change Communication in Combating HIV/AIDS
.
AIDS is often characterized as a disease of intolerance and
ignorance, compounded by social and economic issues such as gender
inequity, poverty, and lack of political will, among others. Common
myths and misinformation about HIV/AIDS stand in the way of greater
awareness, discussion, and acceptance of individual and societal
behavior change to reduce risk of infection. HIV-related stigma can also
be a barrier to the uptake of HIV testing and can prevent those living
with HIV from accessing resources for positive living and compassionate
care. Inadequate counseling services can make it difficult for someone
who is infected to understand their options and make an informed choice
about appropriate treatment, reproductive health, and other issues.
Fortunately, strategic health communication interventions can make a
difference informing, equipping, and motivating people to make
appropriate choices about HIV prevention and care.
HIV/AIDS communication efforts, like any HIV/AIDS strategy,
must address the whole care continuum (i.e., prevention, care, support,
and treatment) to be effective. A holistic approach goes well beyond
prevention to include tools for the biological, psychological, and
social care of people living with HIV, their families, and communities.1
Evolution of Social and Behavior Change Communication for HIV/AIDS
In the past, strategic planning for HIV/AIDS communication
focused on determining the knowledge, attitudes, and practices of
individuals deemed at risk for infection. In the process of designing a
communication strategy, the variables contributing to behavior were
identified, and then a theory was developed to explain how these
variables were linked together. An intervention was then designed to
influence these variables with the goal of producing a desired effect.2
As a result, approaches to behavior change in the early years of the
HIV pandemic focused on providing correct information about transmission
and prevention, based on the theory that lack of accurate information
about HIV transmission and acquisition was a primary catalyst for the
spread of infections. Unfortunately, this approach fell short of
producing the desired effect, and it became clear that more complex,
multilayered strategies would have to be developed.3
More recently, frameworks such as the Joint United Nations Program on HIV/AIDS (UNAIDS) communications framework4 and the Health Communication Partnership (HCP) Pathways framework3
seek to understand and explain the role of sociocultural influences
(e.g., socioeconomic status, gender relations, cultural norms, and
spirituality) and environmental influences (e.g., government policy,
access to services, and occupational risks) on human behavior.1
These frameworks are based on the understanding that beyond an
individual’s social network exist larger structural and environmental
determinants that affect HIV/AIDS-related behaviors. Such an approach to
communication reflects a greater appreciation of the complexity of the
HIV epidemic, and a greater emphasis on social groups and contextual
factors rather than individual behavior alone.3
Maximizing Impactthrough Strategic Health Communication
Throughout the past 20 years, health communicators have learned
that health communication strategies that are collaboratively and
strategically designed, implemented, and evaluated can help to improve
health in a significant and lasting way. Positive results are achieved
by empowering people to change their behavior and by facilitating social
change. The field of health communication has evolved into what may be
called the “strategic era,” which is characterized by utilizing many
different channels of communication, multiple stakeholders, and an
increased emphasis on evaluation and evidence-based programming.
Large-scale impact at the national level, more pervasive use of mass
media, and a communication process in which participants (“senders and
receivers”) both create and share together are also increasingly being
emphasized.5 Additionally, there is an ever greater push for
communication to be an integral component of an HIV/AIDS program design,
not a secondary consideration or an afterthought.
Grounding HIV/AIDS Communicationin Research and Theory
Effective communication strategies are evidence based. Evidence
provides information about what individual and social behaviors,
knowledge, norms, and practices need to change. Effective strategic
health communication programs are also based in theory. The theory
employed need not be complex, but it does need to be appropriate. In
other words, the theory should reflect the evidence and the
environmental and sociocultural variables specific to the target
population(s).
The research or evidence needed for strategic health
communication can be split into three categories: formative, process,
and summative. Formative research is used to learn more about a
problem in a specific social context and gathers both qualitative and
quantitative data. Formative research helps identify the extent of the
problem, given the parameters of the specific situation, and the factors
that explain its existence. It is typically conducted near the start of
the program. Examples of formative research activities include using a
baseline questionnaire to define and understand populations at greatest
risk for HIV, determining the relationship among potential implementing
partners in care and treatment, and focus group discussions with
most-at-risk populations to determine exposure risks associated with
specific behaviors.
Process evaluation can be used to track program
activities and how well they are received by the target audience,
thereby providing information for midcourse changes, if necessary. An
example of a process evaluation activity is conducting in-depth
interviews with those affected by the intervention (e.g., exposure to a
prevention message about the risk of needle sharing) to assess the
effectiveness of the intervention.
Summative evaluation assesses how well the program
achieves its objectives. This usually occurs at the end of the program
and provides information on whether or not the program has been
effective and what needs to be changed to achieve the desired result. An
example of a summative evaluation activity is the distribution of a
final questionnaire, to be compared with a baseline questionnaire that
was collected prior to the start of the program.3
Just as there are different research options, there are also
many theories that can be used as a basis for designing strategic health
communication. This chapter provides examples of three theories that
are particularly relevant to HIV/AIDS programming.
The Extended Parallel Process Model
The Extended Parallel Process Model (EPPM)a seeks to
explain when and why fear appeals work and when they fail. It is based
on the idea that in order to motivate people to take action to protect
their health, messages must accomplish two tasks. First, people must be
made to feel that the threat posed by the health problem is real and
serious. In other words, both perceived susceptibility and perceived
severity of the threat must be high. This is the part of the theory that
addresses the fear component. Second, once people are in a heightened
state of awareness because of the fear, they must believe that they have
the capability to take action that will avert the threat. At this
stage, people’s confidence in their ability to act (i.e., their
self-efficacy) and their belief about the effectiveness of the act
(i.e., the response efficacy) must both be high. This is the part of the
theory that addresses the efficacy component. The theory further states
that the combination of high fear and low efficacy can be
counterproductive; if people’s fear levels have been aroused and then
they are led to believe that there is nothing they can do, then they
will avoid dealing with the issue altogether. This is known as a
“fear-control strategy,” which people use to manage heightened levels of
negative emotions, like anxiety. If, however, high levels of fear are
combined with high levels of efficacy, then people invoke a
“danger-control strategy,” which prompts them to take meaningful steps
that will minimize the threat, including taking precautions or
preventive measures.
Using aspects of EPPM, the BRIDGE project in Malawi sought to
persuade people to take preventive actions against HIV/AIDS. BRIDGE did
this by informing people about their risk of HIV infection and providing
them with concrete steps that they could take to avert the threat. In
this way, the campaign sought to increase both perceptions of risk and
self-efficacy. The campaign messages were designed to enhance
self-efficacy by promoting small, doable steps that people could take to
remain free of HIV. The campaign slogan Nditha! means “I can!” in Chichewa (read more about this campaign in the EPPM case study in this chapter).
It should be noted that EPPM is intended for application in any
setting, even though the theory itself was developed in the United
States. Although factors that lead to risk perceptions and efficacy
beliefs are culturally defined, the theory’s central claim—that both
threat and efficacy perceptions must be high in order for people to take
action—is believed by the theory’s creators to hold true across
different cultures.
Communication for Social Change
Communication for Social Change (CFSC)a is not an
actual theory but rather a model that synthesizes two competing
approaches to development communication. For many years, arguments raged
over whether the role of communication in support of development was to
deliver top-down, high-quality information and motivational messages to
mass audiences or to enhance bottom-up communication that originated
from participatory communication processes and that expressed the needs
and priorities of communities. CFSC emphasizes the complementary role of
both top-down and bottom-up communication in engaging communities, in
building on local wisdom, in expanding horizontal communication (i.e.,
communication that occurs between individuals operating at the same
“level”) and through increased access to media. At the heart of the CFSC
approach is a process of community dialogue and collective action
through which the community itself identifies priorities, develops a
vision and plan of action, and mobilizes internal and external resources
to carry it out. Every time a community goes through this process,
changes in both individual outcomes (such as increased knowledge and
healthier behavior) as well as social outcomes (such as strengthened
community leadership, broader participation, and social cohesion) are
expected to occur. The model can be used to describe and explain why
previous community projects were successful or unsuccessful (descriptive
function), and it can also be used to increase the likelihood that
community action will be successful (prescriptive function).7
Social Learning Theory
The foundation of social learning theorya (also
called social cognitive or observational learning theory) is the belief
that people learn to act by observing the actions of others, observing
what happens as a result of those actions, evaluating the results in
relation to their o wn lives, and then rehearsing and attempting to
reproduce those actions themselves. The most common application of
social learning in health communication is the use of role models (e.g.,
celebrities, authority figures) for the delivery of program messages.
The role models are people whom the target audience can identify with
and who perform the behavior being promoted so that audience members can
observe, learn, and evaluate the results for themselves. A key concept
in social learning is self-efficacy, which is confidence in one’s
ability to perform an action and achieve the desired results (e.g., as
in condom negotiation or malaria prevention). Program planners and
researchers use social learning theory to guide program decision making
in several ways. For instance, the theoretical framework helps to
pinpoint what types of messages will be most compelling. Questions that
are raised may include the following:
- Which role models will be appealing and compelling?
- How should the behavior be visually represented?
- How can you stimulate and/or reinforce behavior rehearsal?
- How can trials of the desired behavior be encouraged?
- How can feedback about the results of the behavior be provided?
- How can incentives for performance be provided?
Guiding Principles of Strategic Health Communication
After being grounded in research and theory, strategic health communication should be guided by the following principles:
Target social norms as well as individual behavior.
Individual behavior must be looked at as a product of overlapping social
and environmental influences. Figure 1 shows how family, community, and
peers, as well as environmental factors, all affect individual
behavior.3
Figure 1. Overlapping social and environmental influences
Source: McKee N, Manoncourt E, Chin SY, Carnegie R, eds. Involving People, Evolving Behavior. New York: UNICEF; Penang, Malaysia: Southbound; 2000.
Source: McKee N, Manoncourt E, Chin SY, Carnegie R, eds. Involving People, Evolving Behavior. New York: UNICEF; Penang, Malaysia: Southbound; 2000.
Expand beyond ad hoc activities to a coordinated social movement.
The rapid growth of the HIV epidemic in many countries has intensified
the worldwide commitment to combat HIV/AIDS and has brought many new
actors to the table. However, organizations often act quickly and
without reaching out to other stakeholders in the interest of launching
efforts as soon as possible. This lack of coordination with like-minded
partners often results in duplication of efforts, inconsistency of
messaging, nonstrategic interventions, and an inability to effectively
scale up programs. Even though time and “turf” issues may stand in the
way of effective coordination, there are several benefits to involving
additional stakeholders. Some potential benefits of a more thoughtful,
stepwise approach include the ability to collectively prioritize issues,
harmonization of messages, more effective use of human and financial
resources, and a cohesive strategic planning process in which all
players have a critical and clearly defined role to play and a clearly
defined niche.3
Bring community-level activities to scale through mass media.
Community mobilization is a critical component of social mobilization;
individual communities must be fully engaged as partners before a
society’s response to the epidemic can evolve. Mass media is a powerful
tool in the health communicator’s toolbox, with the ability to reach
millions and provide much-needed information, stimulate discussion on
important issues, and influence social norms and behaviors. Frequently,
these two levels of intervention (i.e., community-level and mass media)
are treated as separate, parallel programs. When effectively
coordinated, they can be mutually reinforcing and complementary
interventions, resulting in a greater overall impact.3
Design the communication program to fit the epidemic. An
effective HIV/AIDS communication program needs to be designed in
response to the specific characteristics of the epidemic in the target
setting. It is important to make the distinction between generalized
epidemics and concentrated epidemics, as communication messages will
differ according to the type of epidemic.8 According to
UNAIDS, a generalized HIV epidemic is one in which adult HIV prevalence
in the general population is at least 1%, and the main route of
transmission is sexual.9 A concentrated HIV epidemic occurs
when HIV is concentrated in certain groups that engage in behaviors
exposing them to a high risk of HIV. (See the “Understanding Different
Audiences” section in this chapter for more information.)
Link to services. Successful communication interventions
provide a clear call to action for the audience. Communication can
greatly improve the uptake of services by promoting specific types of
services and sites. Communication can also improve the quality of
services through interventions designed to enhance the client-provider
relationship. (See the “Creating Linkages to HIV/AIDS Clinical Services
through Communication” section in this chapter for more information.)
Harmonize interventions. Various groups work together
and separately to provide a continuum of prevention, testing,
counseling, treatment, care, and support. When implementing strategic
health communication programs, it is important for implementing partners
to work together to deliver effective and coordinated communication on
HIV/AIDS. The four key elements of harmonization are as follows:
- Consistent messaging. Consistency is of paramount importance when there are multiple programs operating in a small area. If messages conflict, the target audience will lose trust in all of the messages relating to the epidemic. This can result in communication efforts that cause more harm than good.
- Reducing duplication. Some programs may focus on prevention messages, while others may focus on prevention and testing. To maximize the impact of scarce resources, implementing partners should seek to avoid duplicating messages so that they may reach the widest possible target audience with messages from across the entire continuum of care.
- Maximizing resources. Coordinating health communication messages with other implementing partners to avoid duplication and inconsistencies ensures that resources can be used efficiently.
- Prioritizing resources. Coordination among implementing partners provides an opportunity for all partners to determine together which issues are given the highest priority.
Strategic Communication Design
Strategic communication is a promising response to the HIV
epidemic that to date has been underutilized. Barriers that have
prevented the use of strategic communication include lack of funds, lack
of knowledge regarding accurate HIV information among marginalized
groups, lack of defined processes, and misunderstanding of the
communication approach for health. The process of designing strategic
communication requires a systematic approach that includes use of data,
careful planning, creativity, linkages to other program elements, and
stakeholder participation. This contrasts sharply with the common, ad
hoc practice of designing posters or other materials to address a
specific cause. Ensuring that all stakeholders are involved in the
planning process, implementation, and evaluation of the health
communication program is paramount to the success of any communication
effort.3
Utilizing the P-Process
Behavioral change interventions should utilize a systematic
approach in their design and implementation. The systematic approach
refers to a sequence of steps that guide program planning and
implementation, and one model is called the “P-Process.” This process
entails five steps: analysis, strategic design, development and testing,
implementation and monitoring, and evaluation and replanning.
Figure 2. Steps in strategic communication:the P-Process
Source: Johns Hopkins Bloomberg School of Public Health/Center for Communication Programs.a
Source: Johns Hopkins Bloomberg School of Public Health/Center for Communication Programs.a
Understanding Different Audiences
Before designing a communication program, it is important to
understand the characteristic of the HIV epidemic in the target setting.
In some countries, for example, in southern India and Afghanistan, the
epidemic is mostly confined to a certain group of people, for example,
sex workers in India, men who have sex with men (MSM), or injecting drug
users (IDUs) in Central Asia. These types of epidemics are referred to
as concentrated or nongeneralized epidemics. In other
countries (e.g., South Africa), the epidemic is affecting the general
population rather than any specific subgroup. This type of epidemic is
referred to as a generalized epidemic.
As stated earlier, a generalized HIV epidemic is when adult HIV
prevalence in the general population is at least 1%, and a concentrated
epidemic is when HIV is concentrated in certain groups who engage in
behaviors that expose them to a high risk of HIV infection.9 The HIV epidemics in countries in sub-Saharan Africa are generalized epidemics.
Characteristics of nongeneralized (concentrated) epidemics include the following:
- Usually driven by sexual and injecting practices, especially among vulnerable groups, including sex workers and men who have sex with men
- Target population usually harder to reach than the general population; tend to be underground or do not want to be identified according to their behavior
- Require large-scale but targeted activities to reach HIV-vulnerable groups
Characteristics of generalized epidemics include the following:
- Driven primarily by sexual behavior in the general population
- Require large-scale changes in social norms, sexual values, and practices
- Social change critical to the success of interventions
- Can be impacted by broad-based, national (versus targeted) campaigns
Due to these differences in the nature of epidemics,
communication messages must be tailored to address the behaviors for
each type of affected group. In short, there is no “one size fits all”
strategy that can be used to address all of the issues surrounding HIV
transmission across a variety of settings.
Communicating to Different Audiences
When designing messages for any audience, communicators should consider the seven Cs of effective communication.
Communicating to theGeneral Population
Communication strategies targeting generalized epidemics must promote fundamental changes in social processes and norms.8
Yet communicating to the general public about HIV is challenging, given
the number of issues that need to be addressed. The following are some
guidelines to assist with the creation of messages for general
audiences:
- Emphasize “you can’t tell by looking.” Many people think that someone who looks healthy cannot possibly have the virus and therefore do not take precautions to avoid infection.
- Focus on risk behavior. Seek to persuade those engaging in risky behavior to change, instead of focusing on risk groups, as this can lead to stigma and discrimination.
- Focus on the ABCs. Messages should focus on the ABC three-pronged prevention strategy of abstinence, being faithful, and correct and consistent condom use, along with a strategy for partner reduction.
- Promote available services. Promote the available HIV/AIDS services, such as counseling and testing, care and treatment, and support groups. Communication should stress the availability and ease of use of these services.
- Emphasize the importance of getting tested. Getting tested should be emphasized as an entry point to accessing needed services, making positive life changes and getting connected with groups that can provide support.
- Address stigma. Stigma plays an important role in fueling the epidemic. Generalized epidemic campaigns should explain how stigma (language, attitudes, and behavior) allows the epidemic to thrive, and how people often stigmatize others without realizing it.3
In addition to these guidelines, there are a number of myths
surrounding HIV that should be dispelled whenever possible. Some of
these myths have proven to be as deadly as the epidemic itself, and this
is another area where communication can play a pivotal role in slowing
the spread of HIV. Responses to common, widely circulated myths are as
follows:
- Sex with a virgin does not cure HIV/AIDS.
- Condoms are not infected with the virus by foreign governments.
- AIDS is not caused by witchcraft.
- HIV is not transmitted by touch.
- HIV/AIDS is not limited to drug users and homosexuals.10
Addressing Social Factors that Contribute to the Epidemic
There are many social factors that fuel the epidemic,
including, but not limited to, gender, alcohol use, multiple partners,
cross-generational sex, and transactional sex. This section briefly
discusses key messages that address the role these factors may play in
the spread of HIV.
Gender
There are many gender-related factors that are believed to fuel
the spread of HIV. The following are some key areas that communication
efforts can focus on to bring about positive change:
- Gender equity. Clearly communicate the need for gender equity. Gender roles are socially determined and can therefore be changed. Communication can challenge these roles to provide a more equitable environment.
- Power imbalances in relationships. Communicate (in a culturally sensitive manner) that power imbalances in a relationship increase HIV risk. Messages should address the power imbalances and the consequences of these imbalances and can emphasize that a man’s self-worth is determined by caring for his partner’s well-being.
- Inclusion of men. Men have often been ignored in many programmatic gender interventions, including communication, and should be included as partners to fight against gender inequality.
- Targeting men and women together. Provide opportunities for men and women to work together toward decreasing their risk. Gender-based activities are largely focused on women, or if they do include men, they separate targets by gender. Instead, communication efforts should seek to bring the two genders together to openly discuss gender norms.3
Alcohol Use
The consumption of alcohol is now recognized as a key
determinant of sexual risk behavior, and indirectly, as a contributor to
HIV transmission. Cross-sectional studies conducted among adults have
shown that alcohol use is associated with HIV infection.11
Additional studies have discovered associations between alcohol
consumption and unprotected sex, timing of sexual debut, and multiple
sex partners, all of which lead to an increased risk for HIV infection.12
Addressing the complex motivations behind excessive alcohol consumption
is challenging; however, key areas of focus for communication efforts
are as follows:
- Risk behaviors. Messages should seek to persuade those engaging in excessive alcohol consumption to change their behavior by moderately consuming alcohol, as excessive consumption is associated with high-risk sexual behavior.
- Consuming alcohol minimizes perception of risk. Because alcohol use reduces inhibitions and self-control, communication efforts should stress that consumption alters self-perception of risk.13
- Utilize counselors to promote partner communication. Educate counselors on how to help female clients talk to their partners about how consumption impedes communication about HIV prevention.14
Multiple Partners
Multiple concurrent partnerships (MCPs), the practice of people
having more than one sexual partner at the same time, are a major
driver of the HIV epidemics found in much of sub-Saharan Africa. The
rate of change of sexual partners—and especially the number of
concurrent partners—is a key determinant in the spread of HIV. Reducing
the number of partners and more specifically the rate of change of
sexual partners is therefore a key risk reduction strategy. Individuals
in acute stages of HIV infection are highly infectious and messages to
prevent transmission should specifically target this group.17 The following are some key areas of focus for communication efforts targeting those engaging in MCPs.
- Reduce the number of partners and limit the rate at which sexual partners are changed. Advocate for the reduction of sexual partners and fewer changes of sexual partners, stressing the fact that multiple partners leads to increased chances of transmission. MCPs are estimated to increase HIV risk tenfold.18
- “Zero grazing.” Uganda mounted a successful national campaign to encourage people to stick with their regular partners to reduce the risk of HIV exposure. This was termed “zero grazing” in light of the fact that many people in Uganda raise cattle and are therefore familiar with this term. The campaign reported that multiple partner behavior dropped noticeably after the campaign was initiated.17
- Address gender-defined roles. Create awareness about gender-defined roles and behaviors that place expectations on men to act in a dominant or womanizing fashion. Men may also experience psychological pressure to fulfill family obligations, which sometimes results in having multiple sexual partners.18 I In cultures where polygamy is the social norm, messages should be modified to take into account the local context.
- Facilitate dialogue among partners. Research conducted in southern Africa indicates a lack of communication between partners on sexual issues in relationships. Open dialogue can clarify expectations and enhance the quality of a relationship. Communication interventions can play a pivotal role in promoting the benefits of monogamous long-term relationships.
- Link MCP interventions. MCP interventions should be linked with ongoing prevention strategies and programs. Messages on partner reduction and serial monogamy should complement, not replace, messages about abstinence, condom use, or faithfulness.
Cross-Generational Sex
There has been a recent heightened interest in relationships
between younger women and older men, where the woman is significantly
younger than her male partner. The motivations for a woman to engage in a
sexual relationship with an older partner are numerous and include
strategies to gain love and affection, a marriage partner, and monetary
gifts. Unfortunately, studies have shown that larger age differences
within partnerships are associated with decreased condom usage. A
multivariate analysis in rural Zimbabwe showed that a one-year increase
in age difference between partners is associated with a 4% increase in
the risk of HIV infection. Another study in Kenya and Zambia among women
showed that there was a significant positive association between large
age difference with one’s husband and HIV infection.19 The following are key areas of focus for communication efforts addressing cross-generational sex:
- Social norms around cross-generational sex. Sexual relationships with older men are a social norm in many countries. Reducing the acceptability of the practice is a key strategy.19
- Power imbalances in relationships. Similar focus should be given as efforts to address power imbalances specifically (see subsection “Gender”).
- Prevention for young people. Youth easily discount the risk of infection, since the consequences are perceived as something that may occur in the distant future. Messages that focus on prevention, such as preventing unintended pregnancy and the dangers associated with abortion and sexually transmitted infections (STI)s, are more likely to influence behavior in women in cross-generational relationships.
- Girls’ self-esteem. Messages should attempt to raise self-esteem among girls and young women and inform them about alternative sources of income generation.20
- Reproductive health information. Many young girls in cross-generational relationships lack accurate reproductive health information and therefore do not even perceive that they are at risk of HIV infection. This lack of awareness makes it unlikely that they will protect themselves in sexual relationships with older men.
- Need for men to take responsibility. Men must be equally involved in efforts to minimize transmission risk in cross-generational relationships. Messages should encourage men to be sexually responsible by knowing their status, being faithful, and using condoms.19
Transactional Sex
Transactional sex is the act of engaging in sexual relations
for money or gifts, and it is not the same as cross-generational sex.
The economic power of women, especially in Africa and other
resource-limited settings, has decreased for the last century. As a
result, women are increasingly financially dependent on men. In this
situation, women’s sexuality has been used as a source of economic
potential.19 Transactional sexual relationships are a social
norm in many countries. Therefore, social norms are a key area of focus
for communication efforts targeting transactional sex. Reducing the
acceptability of this practice is a key strategy.19
Stigma
HIV/AIDS-related stigma is a reality anywhere in the world
where there are people known to be living with HIV. It is a significant
obstacle to creating change in social norms and individual behavior, and
therefore every communication campaign should seek to address stigma by
creating awareness around the language, attitudes, and behavior that
perpetuate stigma and discrimination. Communication efforts have the
unique ability to present the human face of the epidemic, thereby
challenging the pervasive “us and them” mentality among the general
public. The following are key areas of focus for communication efforts
targeting stigma:
- “Us and them” mentality. HIV-related stigma is often layered upon preexisting stigmas concerning socially marginalized and vulnerable groups (e.g., IDUs, MSM, sex workers). Messages should stress that there is no difference between “us” and people living with or at risk of HIV infection.
- Breaking the stigma cycle. People living with HIV may be implicitly associated with stigmatized behaviors, regardless of how they became infected. So once there is a stigmatizing environment, all sufferers of AIDS are looked at through tinted lenses and are subjected to even more suffering. Those who have been affected by HIV should be treated with respect.
- Concepts of care and compassion. Messages should speak to people’s hearts by appealing to their emotional nature and asking them to be compassionate toward those in their community. It should be stressed that the only way to overcome the epidemic is through a united, community-wide response.
Communicating to Specific Audiences
Epidemics sometimes disproportionately affect specific groups,
such as sex workers, MSM, IDUs, pregnant women, youth, and orphans. This
section offers guidance on key messages targeting specific groups
commonly at risk.
Sex Workers
Sex workers are predominantly women who trade sex for money and
use sex as their primary means of income. They are different from women
who have sex for transactional purposes, or those who engage in
cross-generational relationships, both of which are discussed in another
section in this chapter. Sex workers are particularly vulnerable to
infection due to multiple sexual partners, frequency of sexual acts,
limited condom use, and low bargaining power in condom use with clients.
Key areas of focus for messages targeting this group include the
following:
- HIV infection risk. Sex workers and their clients carry a high risk of contracting HIV. Messages should communicate high levels of risk, as well as behavioral changes on how to lower risk.
- Condom use. Messages should stress that condoms must be used correctly and consistently to reduce the risk of contracting HIV.
- Condom negotiation skills. Sex workers may fear that insisting on condom use will result in violence or loss of income. Communication campaigns should build sex workers’ confidence and self-efficacy for effective negotiation.
- Protection with regular partners. Sex workers often do not use condoms with regular partners. Messages should encourage sex workers to protect themselves in all types of relationships.
- Counseling, testing and STI treatment. Messages should stress the benefits of diagnosis and treatment of STIs and motivate sex workers to act.3
Pregnant Women
Pregnant women who are HIV-positive are an important target for
prevention of mother-to-child transmission (PMTCT) messages. By
providing information on how a mother can prevent her unborn child from
acquiring HIV, mothers are given the opportunity to protect them from
the virus. Additionally, PMTCT is an essential tool in fighting the
epidemic globally. Key messages for HIV-positive mothers include the
following:
- Seek care. Persuade HIV-positive mothers to speak to a counselor about their family planning, PMTCT, and pediatric care for their children who are HIV-infected or of unknown status.
- Treatment options. Communicate that drugs are available to protect their children from infection during pregnancy and delivery.
- Breastfeeding. Promote the latest breastfeeding guidelines for HIV-positive pregnant women to inform the expectant mother about the need to adopt alternative feeding practices to reduce the risk of transmission.
- PMTCT stigma. Communicate the dangers of stigma against HIV-positive mothers (e.g., women suspected of being HIV-positive because they do not breastfeed).3
Youth
Youth represent a unique audience with special needs in regard
to communication program design. Young people often believe that they
are not vulnerable to HIV and, as a result, are more likely to put
themselves at risk of contracting HIV than adults. About half of all new
infections occur in young people between the ages of 15 and 24,
warranting the need to specifically address the behaviors of this
population. Key messages for youth include the following:
- Delay sexual debut. Motivate young people to delay sexual debut as long as possible to minimize exposure to the virus.
- Reduce number of partners. Advocate for the reduction of sexual partners, stressing the fact that multiple partners leads to increased chances for transmission.
- Value condom use. Argue that condom use is valued and expected in any type of sexual relationship.
- HIV is not visible. A key message is that one cannot tell if a sexual partner has HIV unless the partner has been tested.3
- Myths surrounding HIV. Promote the truth behind the common HIV myths that many youth may believe and tell others (see section entitled “Communicating to the General Population”).
People Living with HIV
The goal for health communicators in crafting messages for
people living with HIV is both to promote the ways in which HIV-positive
people’s quality of life can be improved and to stress the importance
of measures to prevent HIV transmission and reinfection. Key messages
targeting people living with HIV include the following:
- Human rights. Address the human rights aspect of HIV by asserting that people living with HIV enjoy the same basic rights as any other individual, and that human rights abuses should not be tolerated. Messages can also refer people to services that can help them in cases where their rights have been violated.
- Available services. Promote the availability and location of health-care and support services for people living with HIV.3
Any communication effort targeting those who are HIV-positive
should involve people living with HIV in the design, delivery,
monitoring, and evaluation of campaigns. In addition, people living
positively can serve as important role models for others living with the
virus and can help model behaviors leading to improved health and
well-being.3
Orphans
Orphans are frequently denied health care and the right to an
education, and suffer stigma due to their status. Additionally, many of
these children are exploited through sexual means, such as through human
trafficking and prostitution. Key messages addressing issues related to
orphans include the following:
- Preserve care for orphans. Communicate the need to help families that are caring for orphans, including the need for community and economic support. Also stress the need for linking orphans with existing support services, especially for those who do not already have a caregiver.
- Rights of the child. Advocate for respect and preservation of children’s human rights; in countries where these rights are not explicitly protected, policy changes or mobilization around this issue can be advocated for.
- Capacity/potential of orphans. Assert the need to support the capacity of children to exercise their rights and grow up to be healthy, productive members of society.3
Men Who Have Sex with Men
Campaigns targeting MSM need to be comprehensive, sensitive,
and culturally appropriate. Reaching MSM populations can be especially
challenging in countries or regions where same-sex relationships are
highly stigmatized, such as in sub-Saharan Africa. Developing successful
programs will require targeting existing social networks and engaging
MSM themselves to achieve the greatest impact. Key messages targeting
MSM include the following:
- Practice the ABC approach. The ABC approach (abstinence, be faithful, use condoms) is an applicable prevention message. MSM in the West are familiar with the term “negotiated safety,” which is a practice that allows for discarding condoms among seronegative partners who negotiate and agree to have sex using condoms outside their relationship.
- All unprotected penetrative sex is risky. Some people believe that anal sex is less risky than vaginal sex, yet rates of HIV transmission associated with anal sex are significantly higher. It is important to stress that a condom must be used during any type of sexual penetration, including anal and oral.
- Misconceptions about oral sex. Penis-to-mouth sex involves some risk, especially if there are cuts or lesions through which bodily fluids can be transmitted. Messages should stress using condoms as a protective barrier for oral sex acts.
- Consistent and correct condom use. Correct condom usage should be stressed, including appropriate application, use, and removal. It should also be stressed that condoms may break when an oil-based lubricant is used.3
Injecting Drug Users
The sharing of needles among IDUs is one of the primary
behaviors responsible for HIV transmission in many countries. IDUs also
contribute to increased sexual transmission, and as such serve as a
gateway for HIV to enter non-IDU populations.
The fact that injecting drugs is illegal makes it hard to reach
IDUs, as they are generally criminalized and marginalized. Another
challenge is the issue of legality around needle exchange programs.
Although research shows that needle exchange programs are one of the
most effective ways to prevent the spread of infectious diseases among
IDUs, these programs are outlawed in most parts of the world. Stigma is a
continuing challenge as well, because many people believe IDUs are to
blame for the spread of HIV.3
Communication programs targeting IDUs must gain the trust of
this hard-to-reach population; utilizing peer educators is important in
message development. Key messages targeting IDUs include the following:
- Dangers of needle sharing. Communicate the high risk of exposure to HIV and other life-threatening diseases (e.g., hepatitis B and C) when sharing needles.
- How to disinfect needles. Stress methods to disinfect needles before use to reduce risk of exposure.
- Sexual risk-taking under the influence of drugs. Many drug users tend to engage in high-risk sexual behaviors. Communicate the importance of using condoms at all times to reduce risk.
- Fight stigma against IDUs. Stigma and discrimination present barriers to accessing many IDUs. Stress the importance of reducing stigma against IDUs, especially that IDUs should not be discriminated against in the health-care setting. This will encourage more IDUs to seek out services, while discouraging health-care professionals from practicing discrimination.3
Creating Linkages to HIV/AIDS Clinical Services through Communication
The need to think and act holistically about client needs in
the provision of HIV/AIDS services is critical. Communication can play a
key role in supporting a holistic approach and improving the overall
quality of care.
Clinic-based, community-oriented, and mass media interventions
all have a place in facilitating the uptake and utilization of HIV/AIDS
services and helping the client to successfully navigate through the
continuum of care.
Specifically, communication interventions can help as follows3:
- Increase awareness of and reduce barriers to the use of the services
- Influence social/community norms to support specific behaviors
- Improve the quality of counseling and provider-client interactions at these services
- Educate consumers and potential clients to make optimal use of the services
- Enable community and service delivery partnerships for effective service delivery
Client-Centered Care
A client-centered care model is one cornerstone of quality
service provision. Patient-centered care is care that (1) explores the
patient’s main reason for the visit, concerns, and need for information;
(2) seeks an integrated understanding of the patient’s world—their
whole person, emotional needs, and life issues; (3) finds common ground
about the problem and reaches mutual agreement on management;
(4) enhances prevention and health promotion; and (5) enhances the
continuing relationship between the patient and the doctor.28
This model of care facilitates a respectful, positive, and
productive interface between the client and service provider. Good
provider interpersonal communication and counseling skills, as well as
job aids, are important tools that facilitate a client-centered
approach.
Clinic-Based Communication
The interpersonal communication and counseling skills of
providers are an often-neglected component of HIV/AIDS training
programs. Yet a provider’s ability to relate to and engage with a client
is central to ensuring positive outcomes. The HIV/AIDS service provider
should be able to put the client at ease and present information in a
clear and understandable way. Providers need to elicit, understand, and
respond to client concerns, as well as provide follow-up and referral
information. These “soft” skills are critical to the success of
initiatives such as provider-initiated HIV testing that are now being
implemented in many settings. Curricula and other tools addressing
HIV/AIDS interpersonal communication and counseling skills are readily
available and can be adapted to suit the needs of a particular setting.a
Provider Job Aids and Client Materials
Job aids and client materials can significantly enhance the
quality of the provider-client interaction. A well-designed job
aid—whether it is a counseling card, flip chart, or wall chart—can help
the provider to present information to the client clearly and
consistently. Job aids can also be used to reinforce provider knowledge
and practice, or to provide the latest technical information on emerging
issues, such as male circumcision. Take-home materials for the client
can reinforce information or topics discussed during the visit, provide
instructions (e.g., medication dosages and timing to improve adherence),
or address concerns that may not have been addressed during the clinic
visit. Print materials distributed to clients can also be shared with
others, including friends and family members, who may play a supporting
role in client care and/or need to be reached with important health
messages.
The following are some key questions to consider when designing
a communication strategy aimed at improving the quality of HIV/AIDS
services:
- What are current levels of quality and access to services, and what plans are in place for improvement?
- By what criteria do clients and community members judge the quality and accessibility of services?
- What factors enable or hinder clients’ ability to communicate well with service providers?
- What are the current mechanisms for community involvement in quality improvement and what opportunities exist for increasing them?
- What are provider opinions and attitudes toward the community and clients they service?
- How do providers treat people living with HIV?
- What are provider attitudes and behaviors toward vulnerable populations, such as MSM, sex workers, and IDUs?
- What factors enable and/or hinder service providers’ ability to communicate in a facilitative, supportive manner while interacting with clients?
- What formal and informal networks exist in the community being serviced?
- Who are the formal and informal leaders in the communities being served?3
Community and Mass Media Interventions
Beyond the clinic walls, community mobilization and other
communication interventions can go a long way in facilitating clients’
understanding of and access to HIV/AIDS-related services.
HIV/AIDS Service Promotion
People need information on the services that are available,
where, when, and at what cost. Promotion of services—from provision of
condoms for prevention to antiretroviral therapy (ART) or PMTCT for
treatment—can range from the simple to the sophisticated: from a
signboard outside the facility listing available services, to more
complex promotional efforts involving branding and promotion through
mass media, local outreach events, and other promotional efforts that
direct people to specific services.
The following are general guidelines for communication efforts aimed at promoting specific HIV/AIDS-related services.
VCT
- Clearly explain voluntary counseling and testing (VCT) and its benefits. Educational materials should explain what VCT is and what people can expect, the accuracy of results, and what results mean.
- Promote the concept of responsibility in relation to getting tested. Messages should promote VCT as something everyone should do, not just those who are ill or have an HIV-positive partner.
- Emphasize confidentiality of testing. Communication should focus on the confidentiality of VCT to build trust in the service.
- Communicate risk to youth. Messages should focus on behavior that puts young people at risk and the importance of getting tested if engaged in risky behavior.3
ART
- Stress that antiretrovirals (ARVs) are not a cure. Make it clear that ARVs treat rather than cure HIV/AIDS.
- Communicate the importance of drug adherence. Stress the importance of following the regimen exactly as prescribed by the doctor to obtain the most positive health outcomes.
- Communicate the negative effects of nonadherence. Stress that nonadherence leads to drug resistance, which in turn can render treatment ineffective.
- Promote support groups. Encourage people on ART to join support groups for psychosocial support.3
Pediatric ART
- Emphasize that adherence is key. Promote information, education, and communication materials to providers to remind them to talk to caregivers about adherence, as it is key to keeping the child healthy.
- Promote peer support. Partnering with an adolescent club can help dispel myths about ART and decrease the harmful effects of stigma and discrimination on young patients.
- Involve children in drug administration. Involving the child in drug administration helps them gain a better understanding of the dosing schedule as well as what their body needs to fight the virus.29
- Promote the efficacy of ARVs. Many caregivers believe that ARVs will not make a difference. Emphasize that when children take ARVs correctly, they can live longer and more productive lives.
- Educate caregivers about drug fatigue. Many caregivers and children may become overwhelmed knowing that they have to take drugs their entire lives. Caution caregivers and young patients against becoming careless or forgetting to take their ARVs, which can lead to treatment failure.30
Integration of Family Planning and HIV/AIDS Care
- Promote spousal communication. Through communication modeling and role play, couples can be encouraged to discuss issues that connect HIV/AIDS and family planning.
- Deepen family planning communication. There is more room for family planning communication in any clinical setting. Address the rumors and misconceptions surrounding family planning and HIV, and promote correct and consistent use of condoms.
- Encourage couples’ counseling and testing. One person in a relationship may find it difficult to disclose an HIV-positive diagnosis to a partner. Encourage couples to get tested and go to counseling as a couple.31
Male Circumcision
- Male circumcision reduces risk of HIV infection. Male circumcision should be recognized as an additional strategy for the prevention of male acquisition of HIV infection. It should be noted that male circumcision does not reduce the risk of HIV transmission from an infected male to his female partner.
- Male circumcision does not provide complete protection against HIV. Circumcised men can still become infected with the virus, and if HIV-positive, they can still pass the infection to others.
- Promote consistent condom use, even with male circumcision. Male circumcision does not provide complete protection against HIV; therefore, other HIV prevention strategies, such as male and female condoms, should be promoted.32
Conclusion
Communication is an important tool for promoting positive
behavior change—educating, informing, and motivating people to improve
their health and the health of their families and communities. As has
been described in this chapter, various forms of communication have been
successfully used in resource-limited settings to fight many of the
drivers that fuel the epidemic. Only through persistent and
well-conceived, comprehensive communications strategies, coupled with
high-quality health services, can we reverse the tide of the HIV
epidemic in the most affected regions of the world.
Acknowledgments
We would like to thank the following people for their
contributions to this chapter: Chris Barkley, Jane Brown, Maria Elena
Figueroa, Lisa Folda, William Glass, John Howson, Uttara B. Kumar, Neill
McKee, Jen Orkis, Rajiv Rimal, Seth Rosenblatt, Kate Stratten, Ian
Tweedie, and Carol Underwood. Equally, we would like to thank and
acknowledge all of those who contributed to the programs cited in the
sidebars.
aMore information on EPPM can be found at
http://www.msu.edu/~wittek/eppm.htm and at
http://changingminds.org/explanations/theories/extended_parallel_process.htm.
aFor more information on CFSC visit http://www.communicationforsocialchange.org.
aFor more information on social learning theory, visit http://www.learning-theories.com/ social-learning-theory-bandura.html.
aFor more information on the P-Process, visit http://www.hcpartnership.org/Publications/P-Process.pdf.
aFor examples of communication tools, visit: http://www.jhuccp.org/pubs/.
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