PSYCHOSOCIAL ASPECTS OF HIV/AIDS: Adults PSYCHOSOCIAL

PSYCHOSOCIAL ASPECTS OF HIV/AIDS: ADULTS

PSYCHOSOCIAL ASPECTS OF HIV/AIDS: Adults

PSYCHOSOCIAL

Michael W. Ross, M.A., Ph.D., M.P.H., M.H.P.Ed.; Hadi Danawi, Ph.D., M.P.H.;
Michael B. Mizwa; Lorraine Cogan, L.M.S.W.; Marci Klein, L.M.S.W.;
Rejoice G. Magongo, R.N., R.M., B.Cur.;
M. Connie Kganakga, R.N., R.M., B.Cur., M.A., M.P.H.

Objectives 5. Health care providers are affected by the stressors
of caring for patients with HIV and need to
The purposes of this module are to: develop resources for personal and occupational
1. Examine the psychosocial issues involved in the support.

impact of HIV/AIDS. Overview
2. Evaluate and identify means of reducing the
HIV/AIDS has many physical effects, but perhaps
personal and socioeconomic effects of some of its most profound effects are on the
HIV/AIDS. psychological, social, and economic health of the
3. Identify and describe appropriate resources for HIV-positive person, his or her loved ones, and the
care and support. community. Since the beginning of the epidemic,
4. Identify the ways in which caring for people with stigma and fear have surrounded many of those who
HIV/AIDS affects health care providers. live with and die from HIV/AIDS, as well as those
5. Identify sources of stigma and discrimination and who love and care for them. The magnitude of these
discuss ways of reducing their negative effects on psychosocial effects makes them central to HIV-
patients and health care workers. prevention efforts, care for people with HIV, and the
response of communities to the massive losses of
Key Points people in their most productive years of life. This
lecture will examine the effects of stigma on care for
1. Stigma affects all aspects of caring for people people with HIV; the effects of HIV on the
with HIV/AIDS. individual, family, group, community, and
society; and potential interventions on each of these
2. HIV has profound psychosocial effects on the levels.
HIV-infected person, the family, the community,
and the society at large. 311

3. Denial of HIV and depression are common
responses to HIV infection.

4. Emotional and spiritual care are important
components of providing care for people with
HIV.

HIV CURRICULUM FOR THE HEALTH PROFESSIONAL

Stigma Discrimination becomes infected with HIV because she has
and HIV violated the mourning period after her husband
died.
Probably the single most important factor in producing • Therapeutic protocols are lacking for anti-HIV
and extending the negative psychosocial impact of medications that could control the spread of the
HIV and AIDS is stigma. Consequently, actions to epidemic and prolong lives.
reduce or protect against stigma may be the most
significant step that can be taken to improve the Stigma prevents people from talking about and
psychosocial well-being of people with HIV/AIDS. acknowledging HIV as a major cause of illness and
Stigma can be defined as “an act of identifying, death. Stigma prevents HIV-infected people from
labeling, or attributing undesirable qualities targeted seeking counseling, obtaining medical and
towards those who are perceived as being shamefully psychosocial care, and taking preventive measures to
different and deviant from the social ideal” and as avoid infecting others. Prevention behaviors are also
“an attribute that is significantly discrediting (and is) stigmatized, and people are reluctant to introduce
used to set the affected persons or groups apart from behaviors that could associate them with the virus,
the normalized social order.”1 Discrimination can be such as use of condoms, certain medications, and
defined as “an action or treatment based on the stigma infant formula when appropriate. A woman with
and directed toward the stigmatized” and as “sanction, HIV might want her partner to use a condom but
harassment, scapegoating, and violence based on might be reluctant to ask because of the stigma
infection or association with HIV/AIDS.”1 Stated more associated with the suggestion of HIV risk.
simply, stigma is the attitude, and discrimination is
the act. Acting through discrimination, denial, and If one family member exhibits signs and symptoms
shame, stigmatization is an impediment to HIV of HIV, the entire family may face rejection and even
prevention and treatment efforts. A broader definition violence from the community. The loss of social
of stigma2 argues that the concept can be understood support results in isolation for the family, which may
only in relation to notions of power and domination. also fear loss of employment, denial of school
Power and control exerted over the devalued group admission, or denial of adequate housing. Stigma can
create social inequality and result in the social attach to children of HIV-infected parents and to
exclusion of people with the stigmatized disease. orphans whose parents died of AIDS. Globally, the
AIDS epidemic has robbed 15 million children (12
People with HIV/AIDS are stigmatized and million in sub-Saharan Africa) of one or both parents.
discriminated against for many reasons, including: Children may be ostracized at school if it is known
• HIV is a slow, incurable disease that eventually that they have an HIV-infected family member, and
HIV-infected children may be denied school services
results in suffering and death. for fear that they might spread the virus through
• Many people regard HIV as a death sentence. casual contact.
• The public often poorly understands how HIV is
Stigma and discrimination also occur in the health care
transmitted and is irrationally afraid of acquiring setting. Sometimes HIV-infected patients are denied
HIV from people infected with it. appropriate care or are segregated from the general
• HIV transmission is often associated with hospital population. Health care workers may
violations of social mores regarding proper sexual selectively use universal precautions only with HIV-
relationships, so people with HIV are associated infected patients. Reasons may include a lack of
with having done something “bad.” For example, medical resources, but health care workers’ ignorance
in some cultures, people believe that a woman

312

PSYCHOSOCIAL ASPECTS OF HIV/AIDS: ADULTS

and stigmatization of HIV can also be factors. A raped thousands of women and girls, putting them at
survey of 1000 physicians and nurses in West Africa high risk of contracting HIV. Among an estimated
in 2002 found that 20 percent of them felt that HIV- 250,000 rape survivors, it is estimated that up to 67
infected patients had behaved immorally and deserved percent are living with HIV.5
their fate.3 Oftentimes health care workers who help
patients with HIV may also be stigmatized because Sex education may also be stigmatized, perhaps in
of their association with the virus. the belief that it can contribute to sexual activity. As
a result, young people may lack information to
Statistics indicate that close to 75 percent of the global prevent the spread of HIV. Research shows that a
HIV/AIDS caseload occurs in Africa. As in other significant number of girls in Africa contract HIV
places, stigma associated with HIV/AIDS in Africa during their first sexual encounter.6 Remarkably, 8
involves attributions of other stigmatized behavior, percent of women surveyed reported having sex before
such as homosexual acts among young men. the age of 13, and 15 percent said they had sex before
Homosexuality is highly stigmatized and is even their first menstrual period. Only 27 percent reported
illegal in many parts of Africa and Asia. HIV/AIDS is using a condom during their first sexual experience.
also often blamed on outside forces, such as foreigners In areas of high HIV prevalence, infection during
or the devil. Stigma may even lead to violence against early sexual encounters is likely.
those blamed for introducing the disease. In 2003,
schoolchildren in Ghana staged a demonstration to Most routes of HIV transmission are not exclusively
demand that all tourists be required to get HIV tests. associated with “immoral” behaviors. But such
Sex workers, an integral part of the spread of HIV, behaviors are attributed to those infected, thus doubly
are stigmatized in most societies. Stigma and stigmatizing them – through infection and through
discrimination prevent sex workers from playing a attribution. Prevention efforts are also stigmatized
bigger role in the fight against HIV/AIDS. through their association with HIV; the attribution
is that those trying to protect themselves must be
Anal sex is also widely stigmatized, independent of infected. Stigma is thus associated not only with
its association with HIV infection. It has been shown psychosocial distress, but also with a reduction in
to be a more common practice in Africa than prevention efforts and practices. The need to
previously thought: In a 2004 survey in South Africa4, minimize the effects of stigmatization in order to
male-male sex accounted for 7 percent of sexual improve prevention and treatment efforts cannot be
practices, and heterosexual anal intercourse is not overemphasized. Since HIV/AIDS stigma is a social
uncommon as a form of birth control. Stigma may and cultural phenomenon of the entire community
cause people not to talk about risk behaviors and risk and not simply the result of individual actions,
reduction. By association with HIV, stigma may also attempts to reduce stigma must address the
attach to HIV-prevention methods, such as the use community rather than focus on individuals.
of condoms, and thus prevent HIV risk reduction
among the uninfected. Health care professionals must be aware of the stigma
faced by their HIV-positive patients and must be
Social dislocation carries with it not only additional scrupulous in protecting their patients’ confidentiality.
risks of infection but also the stigma associated with At the same time, providers can take steps to reduce
being a foreigner or outsider. A significant number of the effects of stigma on their patients. By promoting
refugees may have contracted HIV in their own disclosure of a positive HIV test result to the patient’s
countries before seeking refuge elsewhere. Warring family or spouse, they can help build a support system
groups in Sudan, Congo, Uganda, and Rwanda have for the patient and educate family members about

313

HIV CURRICULUM FOR THE HEALTH PROFESSIONAL

HIV. They should provide supportive counseling to uncertain or apprehensive about how others will react.
patients, caregivers, and fellow health care providers Third is a “bargaining” stage; they may tell carefully
to reduce the stressful effects of stigma. Lastly, all selected significant others about their HIV. Fourth,
providers should regularly examine their personal people may look for others in the same situation to
values as they relate to caring for people with obtain peer support and discuss problems. In some
HIV/AIDS. cases, a fifth stage of seeing themselves as special or
different may occur, followed by altruistic behavior
Psychosocial Effects of HIV or acceptance of their infected status. However, the
on the Individual more stigmatized HIV/AIDS is, the less likely the
patient will progress beyond confiding in carefully
Even if stigma is minimized, an incurable and often selected others. When disease symptoms occur, new
fatal disease requires enormous psychosocial psychological issues arise.
adjustments. People diagnosed with HIV experience
many of the emotional responses identified in people Psychological Issues Through
facing a terminal illness.7 They commonly go through the Progression of HIV/AIDS
an initial stage of denial, in which they do not
acknowledge having the disease or deny its likely The issues facing HIV-positive people vary in
consequences. HIV threatens a person’s life, goals, accordance with the disease process, including whether
expectations, and significant relationships; no wonder the disease is symptomatic. In a study following 80
that many people are reluctant to admit their diagnosis homosexual men with HIV/AIDS for 15 years,
or their risk of infection. It is not uncommon for Nilsson Schönnesson and Ross noted common themes
people who subject themselves to high-risk situations that emerged at different points in the disease process.9
or behaviors to deny that they are at risk of HIV They found that HIV is a threat not only to people’s
infection. They often avoid testing, and if they are physical survival, but also to their psychological
tested, they avoid following up on results, as if survival. Early in the disease, people often see
avoiding a clinical diagnosis might prevent the disease. themselves as being “persecuted” by the virus – an
In order to battle HIV successfully, people must have external, alien, bad object. At later stages, physical
some level of acceptance of the disease so that they and psychological anxieties and fears about death are
can seek counseling, social support, and medical care. common.

Stages of Reactions As the disease progresses, control (or power) issues
to HIV Positive Status emerge as patients face increasing loss of physical
control. Self-efficacy and active involvement in their
When people discover they have HIV or AIDS, their health can increase people’s sense of being in control
reactions tend to follow a series of stages, although and reduce their risk of feeling helpless. But hope
these are not invariable and some people may skip may alternate with despair. Nilsson Schönnesson and
several stages.7 The stages are similar to the Kübler- Ross found that existential issues invariably emerged
Ross stages of response to dying.8 The first stage is in response to threats to physical and psychological
shock, denial, and anger; people may feel guilty about survival.9 Patients’ sense of the meaning of life may
their infection or angry at those they believe infected be shattered, and they will need to reconstruct new
them. The second stage is withdrawal; they recognize meanings that incorporate HIV. For some, this may
the stigma associated with HIV/AIDS and may be include personal and spiritual growth, with HIV as
an impetus to do something with their life or for

314

PSYCHOSOCIAL ASPECTS OF HIV/AIDS: ADULTS

their family. Existential isolation – a fear of being the equation of HIV with AIDS and of AIDS with
rejected or abandoned – may lead to anxiety and death. People faced with this may have a variety of
depression. For many, the existential issues involve reactions. They may become depressed and hopeless
spirituality, often a rediscovery of religion if the person and feel that there is no reason to seek care for what
has a history of religiosity. For such people, religious is considered a terminal illness. Others may deny that
belief systems may be a major source of psychosocial they have the illness because they feel “too healthy”
support and consolation. to have HIV.

At the beginning of the disease process, issues of death Psychosocial support is an important part of providing
tend to be dealt with indirectly, as fears of psychological health care to people with HIV. Professional counselors,
death. At the severe symptomatic stage of AIDS, social workers, health care workers, ministers of
patients experience these issues as much more direct religion, trained volunteers, friends, and family play
concerns related to physical death. Views of the crucial roles in providing psychosocial support. One
persecutory nature of HIV change over time. Initial of the first steps in providing adequate assistance for
bewilderment turns to fear as the disease becomes people with HIV is to make sure the helper is
more severe. Denial is most typical in the early stages thoroughly aware of and comfortable with the facts
of infection. Control issues are more salient in the about HIV transmission. If helpers feel personally at
asymptomatic and mild symptomatic stages, and risk from HIV-infected patients, they will convey
helplessness and hopelessness are most concentrated those feelings to the patients, who will feel even more
in the severe symptomatic and terminal phases of isolated than before. Counselors need to educate
AIDS. Thus, HIV disease can be characterized as themselves about HIV to adequately counsel people
producing four major psychological concerns: with HIV. Individual and supportive counseling can
existential and spiritual issues; a perception of HIV help patients come to terms with their HIV diagnosis
as a threat or persecutor; feelings of vulnerability and and with how it will affect all aspects of their lives.
loss of control; and death-related concerns. These Patient education should include information about
concerns emerged from a longitudinal study of a how HIV is transmitted and should give the patient
Western, gay population, but it is likely that the some idea of common physical and emotional
same issues and stages of dealing with HIV would responses to HIV. This type of education can help
emerge in non-Western countries. patients anticipate and plan for these experiences.

Depression is common among people with HIV, Group counseling can also play an important role by
especially as they adjust to the fact that they are no allowing individuals with HIV to share experiences
longer the healthy people they once thought they with one another. However, this is usually not a good
were. Adjustment to HIV is affected by the lack of idea until the person has been able to accept the
hope that comes from a person’s inability to access or diagnosis enough to come to the group and
benefit from treatment and the anticipated rejection communicate honestly. Group support can help
and need for secrecy because of HIV-associated patients cope with their emotional responses to HIV
stigma. Depression is increased by internalized shame based on accurate information, shared experiences,
regarding previous risk behaviors and by fear that empathetic listening, and assistance with problem-
others will find out about their risk behaviors and solving. Counseling and support can help people with
HIV infection. Seeing many others become ill and HIV share their feelings about secrecy and stigma
experience alienation before succumbing to AIDS and consider how these influence their emotional
increases fear and depression. One common issue is and physical health. Counseling and support can also

315

HIV CURRICULUM FOR THE HEALTH PROFESSIONAL

help people consider how their own behaviors can cope with the existential and intrapersonal questions
promote health and well-being, such as seeking raised by a life-threatening illness and with regrets
resources for adequate nutrition, shelter, proper the person may feel about past actions, relationships,
medical follow-up, adequate sleep, and management or experiences. Traditional healers, often the first care
of stress and anxiety. providers sought out by patients, can also be a source
of support. When traditional healers and other
Supporting the spiritual needs of HIV-infected people medical providers work together and have a shared
and their families is a critical component of good care understanding of the goals of care, patients with
and support. Patients with AIDS report significantly HIV benefit. Hope can be engendered in terminally
lower levels of spiritual well-being than patients with ill patients by controlling symptoms, encouraging
cancer and other terminal illnesses.10 They also report relationships, assisting the patients with practical
greater feelings of loneliness, fewer support systems, needs, affirming their value, and helping them
and less satisfaction with the support systems they review their life experiences and personal worth in a
have. Support from spiritual leaders who are positive way.11
significant to the patient helps the patient and family

HIV is an illness that affects the whole family.
316

PSYCHOSOCIAL ASPECTS OF HIV/AIDS: ADULTS

Psychosocial Effects and for orphans, families are often beset by economic
of HIV on the Family and social problems as well as the grief that
accompanies the loss of family and friends. They may
HIV is an illness that affects the whole family, not benefit from group or family counseling, including
only the infected individual. When one member of a counseling about their desire to have a family, perhaps
family has HIV, often there are others who are as yet the need to prevent unwanted pregnancies, and
undiagnosed. When HIV infects one partner in a negotiation of risk-reduction practices such as condom
relationship, both partners are affected. The infection use. Individuals may need training in assertiveness
may indicate that sex or other risk behavior has and how to communicate their needs. It is also
occurred outside the relationship, but even if the important not to forget the more basic needs the
infection predated the relationship, both partners will family is facing: food, shelter, and dwindling finances.
be involved in the emotional trauma of the discovery.
Ideally, the couple should openly discuss sensitive A common issue in counseling is who should be told
matters such as condom use, sexual fidelity, and of a person’s HIV status and how and when the
childbearing. This does not always happen. Regardless matter should be communicated. One approach is to
of his or her own risk behavior, the undiagnosed educate the infected person about how HIV progresses.
partner may express anger and violence toward the While the person is still asymptomatic, he or she
person who has been diagnosed. The diagnosis of should consider whom to tell about the infection
HIV infection in a child usually indicates the presence before the illness begins to manifest itself. A counselor
of the virus in the mother. The father and other can help the patient identify family members and
siblings may carry the infection as well. friends who are supportive and will be open to
education regarding HIV. A related issue is disclosure
Cultural, social, biological, and economic pressures to a sexual partner or spouse. Partner-notification
make women more vulnerable to HIV infection than programs may help patients who want to tell their
men. In some areas, the high prevalence of rape puts partners but do not feel comfortable doing so. Some
some women at risk of acquiring HIV. In others, patients may opt not to tell people with whom they
teenagers are pressured into sexual relationships with live because they fear losing their home and family
older men who may be infected with HIV. Women support. The reaction of a partner or other family
are often economically dependent on men and unable member could be violent. At times, it may be possible
to negotiate safer-sex practices, including condom to give alternative explanations for changed behavior,
use. Women are usually the primary caregivers for such as wanting to use condoms to avoid pregnancy.
their families and may have little support from others In societies where a man’s virility and a woman’s worth
when they are ill themselves. As more people receive are measured by how many children they have, this
care for HIV/AIDS in their own homes or the homes may be more difficult.
of others, health care workers must keep in mind that
HIV-infected women are likely to care for everyone Socioeconomic Effects
else in the family, often to the detriment of their own of HIV/AIDS
health. Households led by women also face greater
economic difficulties and have fewer supports. HIV/AIDS affects the economic well-being of families,
businesses, and societies in many ways. When people
Strengthening the family structure is especially become ill and die, society loses not only those people
important because of the tremendous stress that HIV but also their productive potential. They no longer
puts on family systems. Besides caring for ill relatives hold jobs, manufacture goods, provide services, or

317

HIV CURRICULUM FOR THE HEALTH PROFESSIONAL

support their families. Families lose their breadwinners; The impact of HIV/AIDS on broader indicators of
the nation loses people who contribute to the well- development, such as life expectancy, has been
being of society.12,13 profound. In the 1950s, a child born in southern
Africa had a life expectancy of 44 years. By the early
As families use their time and money to care for ill 1990s, that had risen to almost 60 years. But life
members, their energies are diverted from working to expectancy is expected to drop to 45 years between
provide income or farming to provide food. Not only 2005 and 2010 because of the toll AIDS has taken.12,13
the present but also the future is affected, as family Poor households are being pushed deeper into poverty.
members discontinue education because of the The effects of the AIDS epidemic will be felt for
financial needs of the family. Even burying the dead generations, because so many children are being
makes life more difficult for families and society. deprived of adequate nurturing, nutrition, education,
Funerals are costly, and people miss days from work and good role models.
to attend the rituals. The epidemic’s high death toll
is producing cultural changes. In some communities In sub-Saharan African countries such as Malawi,
with high rates of HIV, cemeteries have become Mozambique, Tanzania, Uganda, and Zambia,
overcrowded, creating pressure to adapt to practices determinants of long-term growth show sharp declines
not previously sanctioned by religious and cultural as a result of the AIDS pandemic. In South Africa,
authorities, such as cremation. Funerals are a visible, the gross domestic product (GDP) is projected to
potentially numbing reminder to all that a deadly decline by 17 percent between 2002 and 2010.14
disease threatens their survival.
Frail economies, weak institutions, declining standards
HIV threatens workplace productivity due to deaths, of living, and reduced social and governmental
absenteeism because of illness and funeral attendance, capacities indicate that the impact of HIV/AIDS on
and lower productivity of sick or newly hired the future of African societies will be devastating. The
replacement workers. Other increased costs to the decimation of countries’ most productive segment,
business sector include expenses for insurance and with the resultant undermining of their tax base and
medical care for sick employees, which must be their ability to finance such critical infrastructure as
weighed against the cost of having to train new health and education, are certain to hamper sustained
employees if more experienced employees become economic, cultural, and societal development.
sick because of inadequate health care.
The scale of the setback to human development by
At the societal level, economic growth in many nations HIV/AIDS is confirmed by a United Nations
is lagging because so many skilled and experienced Development Programme study carried out between
workers have died of AIDS.12.13 High unemployment 1980 and 1992. The average loss of human
and high rates of infection among skilled workers bode development progress due to AIDS was estimated at
ill for countries’ ability to keep social supports intact. 10 years in Zambia, eight years in Tanzania, seven
Studies of teachers and health care workers, for years in Rwanda, six years in the Central African
example, indicate that many in those professions have Republic, and three to five years in Burundi, Kenya,
been infected with HIV. Society faces the challenges Malawi, Uganda, and Zimbabwe.15 Since the severity
of having a great number of its productive members of the AIDS epidemic in sub-Saharan Africa has
sick or dying, leaving few people to care for children increased significantly since 1992, subsequent losses
and the elderly. In many countries, the number of in human development are likely even greater.
people affected by HIV/AIDS is overburdening Reduced productivity in important sectors of the
health-care and social-support resources. economy feeds into economic instability, which in turn

318

PSYCHOSOCIAL ASPECTS OF HIV/AIDS: ADULTS

can undermine a country’s political stability. Civil Societal Interventions
unrest and war create social dislocation, refugees, and
rape, fueling a vicious cycle whose hallmark is an Because of the complex effects of HIV/AIDS on the
increased incidence of HIV/AIDS. individual, the family, the community, and the society,
interventions on many levels are needed to mitigate
Effects of HIV the impact of the epidemic.12,13 Some interventions
on the Societal Level are targeted at individuals with or at risk of HIV,
while others are aimed at the larger community.
HIV places enormous and varied stresses on the Their objective is prevention of HIV and reduction
political, cultural, and religious fabric of society. of societal factors that increase the risk of infection.
Among issues that become critical are the availability Protecting the human rights of vulnerable members
of health care, social supports for orphans and of society, who are often hardest hit by any health
caregivers, legal rights and responsibilities of people problem, is another important step in mitigating the
with HIV, and the response of religious and cultural effects of HIV. Destigmatization of HIV and legal
systems to the needs of their members who are infected protection from discrimination and physical harm of
with or affected by HIV/AIDS. Political instability people with HIV are important because of the broad
may be exacerbated by growing frustration with the effects that stigma and fear have on prevention and
government’s inability to stop or slow the epidemic treatment efforts.
or to respond effectively to the needs created by it.
Increased poverty and social inequality may encourage Role modeling is an effective way to encourage
conflict and crime. How these critical issues are behavior change, as in the case of HIV testing in Siaya,
resolved will determine society’s survival and viability. Kenya. When three members of parliament took the
lead by offering to be tested in public, a large number
The effects will be most obvious in the area of health of people joined them. The three MPs later called on
care as the need for services increases. Providing fellow legislators and civic leaders to follow suit and
treatment for HIV/AIDS and the illnesses that take the lead in motivating other districts to join in
accompany the infection is expensive. Often this voluntary counseling and testing initiative.
governments must choose between providing Leading figures who discuss their HIV infection in
treatment and funding prevention programs. The public may also make a major contribution to
choices are not easy. reducing stigma.

Education systems face shortages as teachers become Many projects try to help patients and families with
ill and die. A rare public-sector assessment basic needs and income generation. Reduction of
commissioned by the Government of the Kingdom poverty and improvement of the overall health of the
of Swaziland estimated that the country would have population are important objectives in the fight against
to train 13,000 teachers between 2003 and 2011, HIV/AIDS. Considerable work is being done at the
compared to 5,093 if no AIDS epidemic existed.16 local level by non-governmental organizations (NGOs)
Schools also have to deal with significant numbers of and community-based organizations (CBOs), often
infected and affected children with psychological, in conjunction with the government. Approaches
social, and economic problems caused by the epidemic. range from institutionalized care to home-based care
Enrollment rates in institutions of higher education for terminally ill patients to training for lay counselors.
may drop because fewer children live to adulthood. To be successful, home-care interventions must be
supported with structured programs from the health-

319

HIV CURRICULUM FOR THE HEALTH PROFESSIONAL

service delivery system. Poor families without such another link in the chain of transmission. This will
basic resources as clean water and adequate food are need to be balanced against the stigma of being
likely to need extra training and resources to care for identified as being HIV-infected, e.g. through
a sick family member at home. Health care providers condom use.
should assess each family’s needs for support when
making a home-care plan. Many families may benefit The ABC Prevention Approach
from very simple support, such as a friendly visit, a
referral for food assistance, latex gloves, or advice to Uganda has significantly reduced the transmission of
improve caregiving skills. Families also need contact HIV by using the ABC approach: Abstinence, Be
information, such as phone numbers or addresses, in faithful, use Condoms. This harm-reduction approach
the event of a problem or emergency. provides each person with several strategies for
preventing HIV transmission to themselves and others.
On a larger scale, public and private-industry policies
regarding HIV and HIV prevention should be Abstinence from intercourse is likely to be most
evaluated on an ongoing basis to examine their effects useful with adolescents, who may be encouraged to
on the lives and health of the population. Advocacy delay intercourse, and in situations where families or
for policies ensuring confidentiality of HIV status, partners are separated by work or travel.
access to medical care, and protection from
discrimination are likely to help more people with Being faithful (staying with one sexual partner) will
HIV meet their physical and social needs. Education prevent HIV transmission if both partners have the
and advocacy within religious and cultural groups, same HIV status (both negative or both positive with
and support from these groups, help patients and the same strain of HIV), which can be known only
families living with HIV. Governments and NGOs through testing. If only one partner is faithful, the
must devote resources to advocacy for increased activities of the unfaithful partner may put the faithful
attention to HIV prevention and the need for one at risk. Where there is a high prevalence of HIV
medications, medical care, and psychosocial and in the population, even one or two additional partners
cultural support for individuals, families, and may make infection likely.
communities living with the virus.
Using condoms consistently and properly prevents
Prevention of Transmission HIV transmission and significantly reduces
transmission of other sexually transmitted infections
People who find out they have HIV may feel powerless (STIs) such as syphilis, gonorrhea, and chlamydia.
against the virus. But they are not powerless to Because having an STI greatly increases the risk of
prevent its spread. The pandemic’s growth depends contracting HIV (via infected membranes and sores),
on an infected person who transmits the infection both condom use and treatment of any STIs are
and an uninfected person who receives it. To slow important.
the epidemic, people who are infected must be
educated to avoid transmitting it. Thus, on diagnosis It must be emphasized that people must be given all
and during subsequent visits, prevention information relevant information and allowed to make their own
needs to be provided and reinforced. As part of this choices as to which prevention method is most
reinforcement, a health care provider might appropriate. What works for one person will not
emphasize that despite their infection, patients still always work for another, and what works at one
have some control over where the epidemic goes in point in life may not work for the same person later
their community and a responsibility not to become on. Regardless of their own points of view, health
workers are ethically bound not to withhold ANY
320 information from patients that might prevent

PSYCHOSOCIAL ASPECTS OF HIV/AIDS: ADULTS

transmission of HIV or other STIs. The benefits and situation, the influence of alcohol or other drugs,
drawbacks of each approach should be explained. We potential violence, no condoms, or a need for food,
can give our patients the tools in the form of shelter, or money). They may also be emotional (when
information, and it is up to them to use the most people are highly attracted to their partner, when they
appropriate ones at the most appropriate times. want children, when they are sexually aroused); often,
despite what people know, their emotions override
Situational Approaches to Prevention their intentions. It is useful to have people describe
the situations in which emotions may override their
Sometimes health care providers assume that patients knowledge and judgment, and to identify the “point
have more individual power to practice prevention of no return” beyond which unsafe sex is likely to
than they actually have. For example, someone may occur. A helpful concept to introduce is “anticipated
have the power to practice prevention in one situation regret.” Here you can ask patients to describe how
but not in others. One useful approach is to ask they would feel after putting themselves or others at
patients to list the situations in which they can risk, and how significant others in their family or
successfully use any of the ABC approaches and the community might feel about their actions. How might
situations in which they cannot. Issues of power and infected patients feel upon learning that they have
stigma will often be the determinants of prevention, infected their partner, when that partner gets a positive
with the weakest person in the situation having the HIV test? Can they imagine explaining infection to
least power. Ask patients to list “risk situations” rather their partner? Seeing risk situations by envisaging one’s
than “risk behaviors.” Then ask how they might avoid regrets afterward can help to balance the emotional
getting into such a risk situation if at all possible, or pressures at critical times.17
how they might reduce the risk if the situation is
unavoidable. Explore ways in which patients have Knowledge and Myths
some power in the situation to control or modify risk.17
Increasing knowledge about HIV transmission and
Knowledge, Attitudes, Beliefs, prevention (or treatment) cannot occur where the
and HIV Prevention mythology about HIV/AIDS is actively contradictory.
Myths will often constitute “folk epidemiology” – a
A common myth among many health professionals is description of beliefs and explanations about HIV.
that information about HIV/AIDS is an effective way These will underlie all aspects of HIV/AIDS – the
to prevent HIV transmission. It is true that adequate stigma, HIV transmission beliefs, HIV treatment
information is a necessary condition to prevent beliefs, and the way people cope with HIV. Cultures
transmission, but it is often not a sufficient condition. will differ on these myths and beliefs, but it is critical
In other words, there needs to be basic information, that health workers be able to list the most prevalent
but by itself information will not always overcome myths. Attempting to deal with HIV/AIDS while
barriers to actually doing preventive activities. The ignoring the folk epidemiology will almost always be
best predictor of whether people will carry out a failure. Health care personnel need to be able to
preventive activities is their intention to do so.18 credibly refute myths that are in direct contradiction
People will have good intentions if they see some to appropriate psychosocial approaches to HIV/AIDS,
value (for themselves, for their family, and for their or that stigmatize such approaches, while reinforcing
community) in preventing the spread of HIV, either those that are supportive of optimal psychosocial care
to themselves or from themselves. and prevention. Myths that have been reported include:
• That people who look healthy cannot have HIV
Even with the best intentions, people may come up • That there are medical and/or folk cures for HIV
against barriers to prevention of HIV transmission.
These barriers may be situational (low power in a 321

HIV CURRICULUM FOR THE HEALTH PROFESSIONAL

• That religious and cultural rituals can remove that without exception, the major religions of the
HIV/AIDS world strongly emphasize the importance of caring
for the sick and suffering and clearly recognize the
• That being a member of certain religions protects obligation of their adherents to support personally
against HIV/AIDS and charitably those suffering from disease.

• That HIV/AIDS is a punishment The health care worker also has a special obligation
• That intact condoms will allow transmission of to help the sick live and die with respect and dignity.
Whether the health care worker personally has a
HIV spiritual or religious belief or not, the patient has an
• That HIV cannot be transmitted from females to absolute right to be cared for and respected. Stigma,
which is a problem in the mind of judgmental others,
males not inherent in the disease, can be significantly
• That having only one partner will prevent HIV lessened if the patient’s spiritual and religious beliefs
are supported. This can be done by recognizing that
(one partner may put someone at risk, depending the spiritual and religious needs of patients may be as
on what that one partner has done) important for their mental health and comfort as more
• That HIV infection will not harm a person, and widely recognized psychological and social supports.
only AIDS is dangerous Particularly when medical interventions are of limited
• That having sex with a virgin will cure HIV/AIDS effectiveness, the health worker may sometimes, if
• That HIV does not cause AIDS requested by the patient, support or facilitate (but
never impose) ways of meeting the patient’s religious
All of these myths have the potential to hinder HIV or spiritual needs. Sometimes the consolations of
prevention or treatment, and health care providers
must be prepared to counter them effectively.

Spirituality Religion
and HIV/AIDS

Existential issues, Addressing spiritual and religious needs can be important for patients’ mental health.
including spirituality and
religious belief, may take
on increasing importance
to people who get a
diagnosis of what is still,
despite advances in
treatment and health
care, a frequently fatal
disease. Unfortunately,
despite the importance of
the spiritual and religious
dimensions of life, in
some cases officials of
some established
religions seek to
stigmatize, rather than
help, people with HIV.
This is despite the fact

322

PSYCHOSOCIAL ASPECTS OF HIV/AIDS

traditional spirituality or religion may make a Environmental factors contribute to the stress of
significant difference to psychosocial adjustment and health care professionals who care for people with
mental health. Such existential issues should not be HIV/AIDS. Providers suffer stigma similar to that of
overlooked in caring for the total needs of the person their patients and are often unable to talk with family
with HIV disease. and friends about their work with patients suffering
from an often unmentionable disease. In addition,
Psychosocial Impacts HIV counselors must face their own fears about being
of HIV/AIDS on Health Care HIV-infected as they encounter patients who may
Professionals have risk behaviors similar to their own. In a study of
HIV counselors in Zambia, 72 percent worried about
Eventually, health care professionals who have lost their HIV status, but less than one-fourth had been
many patients to HIV/AIDS begin to suffer because tested for HIV.21 Half of the counselors said they did
they have inadequate time to grieve or deal with not want to be tested because they did not want to
their losses.19,20 Like their patients, they display many deal with the hopelessness of a positive result or they
of the symptoms of the stages of grief (denial, anger, thought it pointless because there is no cure and only
guilt, bargaining, depression, acceptance). However, limited treatment. This would seem to have a
as they experience loss after loss, the stages become detrimental effect on the ability to counsel effectively
intermingled. They haven’t worked through one loss or encourage others to seek testing.
before another occurs. Loss of multiple patients can
lead to complicated and ongoing grief and can prevent Health care providers working with HIV patients see
the health care worker from processing the thoughts, many patients with complicated family situations
feelings, and responses to patients in healthy and and seemingly unlimited needs. Frequently, there are
helpful ways. Over time, the unacknowledged sadness, insufficient resources, such as medication and supplies,
anger, and guilt can become compressed and result to meet the needs of such patients. A high caseload
in cynicism and decreased ability to invest emotionally combined with inadequate staffing makes it difficult
in patients. It is painful to acknowledge the feelings to provide sufficient counseling to the patient.
associated with seeing patients suffer and die, so the Caregivers are acutely aware of personal limitations
professional becomes more hardened and expresses and powerlessness to fix the patient’s situation. The
less sensitivity and sympathy for the needs of the provider should remember the power he or she does
next patient. have – to provide the medical treatments that are
necessary and available, to try to comfort patients
Symptoms of AIDS-related burnout may be physical when they are suffering, to provide hope and humor
(exhaustion, headaches, back pain, sleeplessness, in a potentially devastating situation, and to be a
malaise, and gastrointestinal disturbances) as well as positive influence in the lives of patients and caregivers.
behavioral (becoming easily irritated and angry,
increased alcohol/drug use, marital/relationship Health care providers can help one another by creating
problems, inflexibility in problem-solving, impulsivity a supportive environment in which they feel free to
and acting out, and withdrawal from non-colleagues). express their feelings. This reduces the isolation and
Cognitive and emotional symptoms may include emotional pain that can affect an individual’s ability
emotional numbness or hypersensitivity, over- to provide sensitive care. Formal support groups for
identification with patients, grief and sadness, health care providers can not only reduce feelings of
pessimism and hopelessness, cynicism, indecision isolation, but they can also lead to new ways to cope
and inattention, and depression.20 with the stress of work. In these settings, it is often
more important to discuss how the person feels

323

PSYCHOSOCIAL ASPECTS OF HIV/AIDS: ADULTS

about and responds to difficult situations, and to lack of education about HIV/AIDS or mis-perceptions
develop new ways to think about and respond to that are also common in the wider community. In a
them, than to discuss in detail the situation itself. study of an intervention to change health workers’
Informal discussions are also helpful because they attitudes and knowledge in Nigeria, Ezedinachi et al.
can occur directly after a stressful experience. The found that health workers (nurses, physicians,
goal should be for the person to express feelings, to laboratory workers) showed less fear of, and more
see things in a new light, and to develop new skills sympathy for and responsibility toward, people with
and strategies for coping. Humor is also an effective HIV disease.22 The intervention provided an increase
way of coping with stress. in HIV/AIDS knowledge, relevant clinical skills, role
modeling, and discussions of appropriate psychosocial,
The health care provider will need to evaluate the clinical, and human-rights issues in treating people
effects of stress on his or her life on an ongoing basis. with HIV/AIDS. It is apparent that health workers,
Adequate rest, exercise, and nutrition are important as members of local communities, may have some of
for the promotion of health for the caregiver as well the same community negative attitudes and beliefs
as the patient. Relaxation techniques such as until appropriate education and role modeling by
progressive relaxation and breathing exercises can senior colleagues and peers occurs. However, after
help the stressed professional to detach from stressful appropriate training, it is apparent that health
situations to address them more effectively. At various workers’ views and practices and the health climate
times, the health care provider may need to re- regarding HIV/AIDS can change significantly. This
examine the stressors and positive factors in his or her is important from a human-rights perspective, since
life to find balance and positive physical and mental ill people have a right to non-judgmental and
health to continue the important work of caring for professional treatment.
patients with HIV/AIDS.

Discrimination and
Human Rights Issues
Among Health Workers

Discrimination against people with HIV may occur
at all levels of the community, including to and from
health workers. Almost invariably, this is because of a

324

PSYCHOSOCIAL ASPECTS OF HIV/AIDS: ADULTS

Counselor: Psychological Assessment
Date:
Referral source: Education level:

Name: Patient diagnosis date/year:
ID #:
Address: Understanding of HIV:

Phone number: Patient’s support system:
Alternate phone number: Who is aware of the patient’s diagnosis?
Emergency contact:
Phone #/Address:

Does the emergency contact know the patient’s Who else are important people in the patient’s
HIV status? support system?

Patient’s primary language: Discussion of disclosure issues/partner notification:
Patient lives with:
Spiritual beliefs/background:
Financial situation:

Patient employed? Discussion of risk factors/risk reduction plan:
Housing situation:

Transportation:

325

HIV CURRICULUM FOR THE HEALTH PROFESSIONAL

Psychological Assessment - Continued

Current issues: Acuity level: _________
1. Acuity descriptions:
1. Minimal: information sharing, brief contact;
2.
agency referral; patient/family alert, cooperative,
3. able to follow through; minimal barriers
2. Mild: Some assistance necessary for follow-
4. through; limited psychosocial counseling; coping
skills evident
5. 3. Moderate: Counselor makes most contacts for
follow-through; patient/family unable to complete
Assessment tasks; limited coping skills; high stress level; limited
Assessment of depression/suicidal thoughts: family support; psychosocial dysfunction evident
4. Severe: Patient/family resistance hinders process;
non-compliance; depressed, hostile, dysfunctional;
extremely limited coping skills; extremely limited
family support.
5. Counselor involvement beyond Level 4; multiple
psychological problems; psychiatric referral;
legal/abuse intervention; patient/family at risk to
self or others.

Interventions/referrals:
1.

2.

Patient’s beliefs that will influence reaction/treatment: 3.

Positive coping skills: 4.
5.

Barriers to coping: Follow up with:
General assessment: Date:
Additional comments:

326

PSYCHOSOCIAL ASPECTS OF HIV/AIDS: ADULTS

Review Questions

1. Find out which agencies provide services for 3. If possible, sit in on an open group for
patients with HIV in the area. Create a people affected by HIV.
report on the resources available to patients
with HIV, either in general or based on 4. Write an essay regarding your own
subcategories, such as in-home services, experience with people with HIV and how
psychosocial services, services for orphans, etc. that has affected you.

2. Interview a counselor who works with HIV-
infected patients.

327

HIV CURRICULUM FOR THE HEALTH PROFESSIONAL

References

1. Miller D. Stigma and HIV/AIDS in Africa: and terminally ill patients with cancer. Journal of
setting the operational research agenda. UNAIDS the Association of Nurses in AIDS Care.
Intercountry Team for East and Southern Africa. 1997;8:31-42.
Tanzania, June 2001. 11. Rousseau P. Hope in the terminally ill. West J
Med. 2000;173:117-18.
2. Parker R, Aggleton O. HIV and AIDS-related 12. Joint United Nations Programme on HIV/AIDS.
stigma and discrimination: a conceptual Report on the global HIV/AIDS epidemic. June
framework and implications for action. Social 2000. Available at: www.unaids.org.
Science and Medicine. 2003;57:13-24. 13. Joint United Nations Programme on HIV/AIDS.
AIDS epidemic update, December 2001.
3. Fredriksson J, Kanabus A. HIV & AIDS stigma Available at: www.unaids.org.
and discrimination. Available at: 14. Akukwe C, Foote M. Economic consequences of
http://www.avert.org/aidsstigma.htm. Retrieved HIV/AIDS. Available at:
June 17, 2004. www.hst.org/za/news/20020503. Retrieved
August 23, 2004.
4. Lane T et al. Anal sex as a risk factor for HIV 15. Cohen D. Socio-economic causes and
infection among young people aged 15-24 in consequences of the HIV epidemic in southern
South Africa: data from a nationally Africa: A case study of Namibia. Available at
representative household survey. XV www.undp.org/hiv/publications/issues/english/
International AIDS Conference, Bangkok, issue31e.htm. Retrieved August 4, 2004.
abstract LbOrC21, 2004. 16. Abt. Associates Inc. Assessing the impact of
HIV/AIDS on the education sector. HIV/AIDS
5. Lyn TE. Africa war rapes worsen AIDS risk – & Education Programme. South Africa.
group. Bangkok, Thailand, July 14, 2004 November 1999. Retrieved March 10, 2005,
(Reuters). Retrieved July 16, 2004, from from http://www.harare.unesco.org/
http://www.alertnet.org/thenews/newsdesk/HKG hivaids/view_abstract.asp?id=327.
307398.htm. 17. Ross MW, Ferreira-Pinto JB. Toward a public
health of situations: the re-contextualization of
6. Vandenhoudt H et al. First sexual intercourse to risk. Cadernos de Saúde Pública. 2000;16(1):59-
HIV infection among young women in a high 71.
HIV prevalence area in Western Kenya. XV 18. Fishbein, M. The role of theory in HIV
International AIDS Conference, Bangkok, prevention. AIDS Care. 2000;12:273-8.
abstract LbOrC22, 2004. 19. Davis BE, Cramer DW. Multiple loss and the
grief of therapists working with HIV. In: The
7. Ross MW, Tebble WEM, Viliunas D. Staging of UCSF AIDS Health Project Guide to Counseling.
reactions to AIDS virus infection in 1998. pp. 353-371.
asymptomatic homosexual men. Journal of 20. Bennett L, Miller D, Ross MW (eds.) Health
Psychology and Human Sexuality. 1989;2:93-104. Workers and AIDS: Research, Intervention and
Current Issues in Burnout and Response. London:
8. Kübler-Ross E. On death and dying. MacMillan Harwood Academic Publishers; 1995.
Publishing Co., 1969.

9. Nilsson Schönnesson L, Ross MW. Coping with
HIV infection: psychological and existential
responses in gay men. New York, NY: Plenum
Press; 1999.

10. Pace JC, Stables JL. Correlates of spiritual
wellbeing in terminally ill patients with AIDS

328

PSYCHOSOCIAL ASPECTS OF HIV/AIDS: ADULTS

21. Baggaley R, Sulwe J, Kelly M, Ndovi MacMillan 22. Ezedinachi NEU, Ross MW, Meremiku M,
M., Godfrey-Faussett P. HIV counsellors’ Essien EJ, Edem C, Ekure E, Ita O. The impact
knowledge, attitudes, and vulnerabilities to HIV of an intervention to change health workers’
in Lusaka, Zambia, 1994. AIDS Care. HIV/AIDS attitudes and knowledge in Nigeria: a
1996;8:155-66. controlled trial. Public Health. 2002;116:106-
112.

Additional Resources for Reading and Research

Books Web sites
1. The UCSF AIDS health project guide to 1. The Synergy Project. Articles and papers

counseling: Perspectives on psychotherapy, regarding program development and care for
prevention, and therapeutic practice. JW Dilley, people with HIV. http://www.synergyaids.com.
R Marks. AIDS Health Project. 1998. 2. HIV Insite. Information about HIV issues
2. AIDS, health, and mental health: A primary around the world. http://www.hivinsite.ucsf.edu.
sourcebook. J Landau-Stanton, CD Clements. 3. UNAIDS. Country-specific information on the
Brunner/Mazel. 1993. impact of HIV. http://www.unaids.org.
3. AIDS and mental health practice: Clinical and 4. Baylor International Pediatric AIDS Initiative.
policy issues. M Shernoff. Harrington Park Press. Information related to HIV in various parts of
2000. the world. Also information on attaining
4. AIDS trauma and support group therapy: Mutual educational resources for caring for children with
aid, empowerment, connection. MA Gabriel. HIV, including videos on teaching children to
Free Press. 1997. swallow pills and encouraging children to take
5. AIDS and development in Africa: A social HIV medication. http://www.bayloraids.org.
science perspective. KR Hope. Haworth Press.
1999.

Acknowledgment
This material is based on a chapter originally authored by Leslie Raneri, M.S.S.W., A.C.S.W.

329