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Persons with HIV and their families and friends face a multitude
of difficult realities:
- Even with the advent of antiretroviral drugs, persons
with AIDS still die prematurely.
- Persons who are HIV-infected can live 10-12 years or
more without developing symptoms.
- Men who have sex with men, and injection drug users, who
may already be stigmatized and subjected to social and job-related
discrimination, may encounter even more societal pressure
and stress with a diagnosis of AIDS.
- 90% of all adults with AIDS are in the prime of life and
may not be prepared to deal with death and dying.
- The infections and malignancies that accompany AIDS along
with some of the medications, can diminish and disfigure
the body.
- People who are living with HIV face the need to practice
"safer sex" and take medications for the remainder of their
lives.
The emotional response to learning that one is HIV positive
can range from relief to devastation; from acceptance of a
chronic illness, to fear of a death sentence.
Although since the advent of the highly-active retroviral
treatments have significantly impacted the survival rate of
those with HIV and AIDS, there are still many people who do
not respond well to the medications. One thing that characterizes
the grief around AIDS is the repetition of deaths that one
person may experience. Many people working with or living
with AIDS for years have gone to countless funerals and have
seen a succession of their friends pass away. This is sometimes
termed "chronic grief." Chronic grief intensifies when one
realizes that, before the grieving process for one death is
complete, many more people may have died.
HIV often produces many losses:
- Loss of physical strength and abilities.
- Loss of mental abilities/confusion.
- Loss of income and savings.
- Loss of health insurance.
- Loss of job/work.
- Loss of housing, personal possessions, including pets.
- Loss of emotional support from family, friends, co-workers,
religious and social institutions.
- Loss of self-sufficiency and privacy.
- Loss of social contacts/roles.
- Loss of self esteem.
People who are experiencing multiple losses may not have
enough time to work through the grief process for each person.
People experiencing multiple losses may feel:
- Guilt.
- Grief.
- Helplessness.
- Rage.
- Numbness.
The physical weakness and pain can diminish the person's
ability to cope with psychological and social stresses.
Infection with HIV can cause distress for those who have
HIV, for those who are their caregivers, family, lovers and
friends. Grief can manifest itself in physical symptoms, including
clinical depression, hypochondria, anxiety, insomnia, and
the inability to get pleasure from normal daily activities.
Dealing with these issues may lead to self-destructive behaviors,
such as alcohol or drug abuse.
The idea of "cumulative" multiple loss or grief saturation
is not new. The emotions felt by long-term survivors of HIV
and the HIV-negative friends and families are similar to the
emotions of the survivors of the Holocaust, survivors of natural
disasters (earthquakes, tornadoes, etc.), and to battle fatigue
described by soldiers.
Disbelief, numbness, and inability to face facts occur for
some. The "fear of the unknown," the onset of infections,
swollen lymph nodes, or loss of weight (or unusual weight
gain) can be accompanied by fear of developing AIDS, or of
getting sicker.
Rejection by family, friends, and co-workers is often experienced.
In some cases, guilt develops about the disease, about past
behaviors, or about the possibility of having unwittingly
infected someone else.
People living with HIV may feel as though their "normal"
lives have completely ended, as they must plan detailed medication
schedules and medical appointments. The cost of the medications
for HIV may result in financial hardship, even if the person
has medical coverage.
Sadness, hopelessness, helplessness, withdrawal, and isolation
are often present. Anger is common: at the virus, at the effects
of the medications, or the failure of some of the medications,
at the prospect of illness or death, and at the discrimination
that can often be encountered.
Some people with HIV consider suicide, some attempt suicide,
and some may kill themselves.
Often feelings experienced by the caregiver will mirror those
of the patient, such as a sense of vulnerability and helplessness.
Caregivers may experience the same isolation as the person
with HIV infection. Finding a support system, including a
qualified counselor, can be just as important for the caregiver
as for the person who has HIV disease. Support from co-workers
can be especially important.
Grief has been described in a variety of forms. It may be
best understood as a process that doesn't involve a straight
line. People do not move predictably step-by-step through
the various stages of their grieving, but progress at their
own speed. There seem to be discreet phases of grief, including:
- Shock and numbing.
- Yearning and searching.
- Disorganization and despair.
- Some degree of reorganization.
The length of time it takes to move between these stages
is determined by the individual, his or her values and cultural
norms. In "uncomplicated grief," an individual is able to
move through these stages and come out of the grieving process.
"Complicated grief" is described as an exaggeration or distortion
of the normal process of grieving. People experiencing multiple
losses are more at risk for complications. If an individual
has been impacted by multiple deaths, it may be difficult
for them to reorganize or "move on" with the process.
Stigma
Stigma continues to be a deterrent for HIV testing
and care. The CDC hopes that their new recommendations for
routine HIV testing in the healthcare setting will normalize
testing for HIV, just as one is tested for cholesterol and
blood sugar levels. The more people that are tested, the earlier
will the infection be detected.
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The existence of HIV/AIDS-related stigma has
been widely documented (HRSA, 2006). Stigma related to HIV/AIDS
appears to be more severe than that associated with other
life-threatening conditions. It also extends beyond the disease
itself to providers and even volunteers involved with the
care of people living with HIV disease. Often, HIV/AIDS-related
stigma is expressed in conjunction with one or more other
stigmas, particularly those associated with homosexuality,
bisexuality, and injection drug use. People with certain religious
beliefs and less educated people may be more likely to harbor
HIV/AIDS- related stigma (HRSA, 2006).
HIV/AIDS-related stigma compromises the well-being
of people living with the disease. Stigmatized individuals
may suffer discrimination that can lead to loss of employment
and housing, estrangement from family and society, and even
increased risk of violence. HIV/AIDS-related stigma also fuels
new HIV infections because it can deter people from getting
tested for the disease, make them less likely to acknowledge
their risk of infection, and discourage those who are HIV-positive
from discussing their HIV status with their sexual and needle-sharing
partners (HRSA, 2006).
Efforts to address HIV/AIDS-related stigma have
focused on three arenas: programmatic, legal, and policy.
HIV-related stigma refers to all unfavorable attitudes, beliefs,
and policies directed toward people perceived to have HIV/AIDS
as well as toward their significant others and loved ones,
close associates, social groups, and communities. Patterns
of prejudice, which include devaluing, discounting, discrediting,
and discriminating against these groups of people, play into
and strengthen existing social inequalities-especially those
of gender, sexuality, and race-that are at the root of HIV-related
stigma (HRSA, 2006).
The discrimination and devaluation of identity
associated with HIV-related stigma do not occur naturally.
Rather, they are created by individuals and communities who,
for the most part, generate the stigma as a response to their
own fears. HIV-related stigma manifests itself in various
ways. HIV-positive individuals, their loved ones, and even
their caregivers are often subjected to rejection by their
social circles and communities when they need support the
most. They may be forced out of their homes, lose their jobs,
or be subjected to violent assault. For these reasons, HIV-related
stigma must be recognized and addressed as a life-altering
phenomenon (HRSA, 2006).
Stigma continues to be a deterrent for HIV testing
and care. The CDC hopes that with their new recommendations
for routine HIV testing in the healthcare setting will normalize
testing for HIV, just as one is tested for cholesterol and
blood sugar levels. The more people that are tested, the earlier
will the infection be detected.
The reasons for HIV related stigma have not
changed in the past twenty years, although several reports
have claimed that there is less stigma toward people with
HIV/AIDS in the U.S. now than at the beginning of the pandemic.
The barrier to eliminating stigma toward this population results
from cumulative prejudice among many groups of people who
are infected: homosexuals, intravenous drug users, minorities,
and women. For that reason, change in attitudes will be difficult
and HIV related stigma will probably persist as a problem
for years to come.
Social Support
Social support has been related to improved
health outcomes in studies of various illnesses, yet it is
often overlooked during a patient assessment. Patients may
be reluctant to participate in group activities or frequent
organizations that support people with HIV/AIDS because of
the real or perceived stigma attached. Fear of disclosure
is still a very real concern for many patients. As one patient
said, "Once you tell someone they know. You can never take
back your words." Strong social support provides a network
of safety and encouragement that allows the patient to share
their concerns and feelings while not feeling stigmatized
for who they are or what they will become.
Caregiver Issues
Caregiving can be a multifaceted positive experience
for the caregiver. However, caregiving requires a great deal
of energy and effort in the face of significant challenges.
Caregivers often benefit from acknowledging their own experiences
and feelings when dealing with all aspects of this disease.
Good self-care for the caregiver is important.
DO meet with a support person, group, or counselor
on a regular basis to discuss your experiences and feelings.
DO set limits in care-giving time and responsibility,
and stick to those limits.
DO allow yourself to have questions. Let "not knowing"
be okay.
DO get the information and support you deserve and
need.
DO discuss with your employer strategies of performing
your job in ways that reduce stress and burnout.
DO remember that UNIVERSAL and STANDARD PRECAUTIONS
are for the patient's health and welfare, as well as your
own.
DON'T isolate yourself.
DON'T try to be all things to all people.
DON'T expect to have all the answers.
DON'T deny your own fears about AIDS or dying.
DON'T continue to work in an area where you "can't
cope."
DON'T dismiss UNIVERSAL AND STANDARD PRECAUTIONS
because you "know" the patient.
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Case Study
#8
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Mary had a friend who died from AIDS when she was in
college, and decided then that she wanted to work in
that field when she graduated as a nurse. Her first
position was on the HIV ward, an area that had a large
turn over of staff. After several years she decided
to try a new position as a visiting nurse on the HIV
team. She liked the flexibility of her position, but
soon realized that seeing patients several times a week
in their home was much different than caring for them
in the hospital. She met spouses/partners and families.
She thought nothing of stopping to pick up something
she knew George, who was very wasted, would like at
the grocery store, lending a new movie to John who had
recently fallen and fractured his hip so wasn't able
to get around, or making a copy of relaxing music for
Fred, the perpetual insomniac. When possible, she would
take a couple of extra minutes at the end of her day
to read to Josh, a young man who lost his eye sight
to CMV. Everything about the new position led to a sense
of intimacy with her patients.
When each died she attended the funeral.
After several years in the field Mary noticed that
she often felt tired. She did not seem to see many of
her old friends as often, and in the evening went straight
home, had a late supper and spent an hour flicking through
channels on the television without really watching anything
special. She noticed that she started to dread going
to the home of patients who were getting close to death.
Co-workers noticed the change in her work habits and
were concerned that she was burned out. Her supervisor
suggested she attend a support group for HIV staff,
and take some time off for a vacation. After several
months in the group she realized that she was suffering
from "cumulative loss." She was eventually able to make
changes in her practice that allowed her to still provide
good care for her patients while keeping a safe space
between her job and her personal life. She planned outings
with old friends, and decided to take art classes at
a local community college in the evening. By learning
to take care of herself and set limits for her job,
she was able to remain active in a field that she loved.
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Continue on to Conclusion
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