HIV disease is not only a medical issue, but a psychosocial one as well. Infection
and the subsequent progression of this disease present the client with a broad range
of personal experiences to negotiate. Changes in the health of people with HIV disease
progresses and demand constant adaptation. Persons With HIV (PWHIV) develop new
patterns of coping as the disease changes. At the same time, the person's condition
may trigger a variety of reactions from others such as family members, significant
others, employers, co-workers, and rehabilitation counselors and other helping professionals.
It is these psychosocial issues that will be addressed in the following pages.
It is very important for rehabilitation professionals to understand the underlying
psychosocial issues and stages of HIV Disease and AIDS to provide the most effective
services possible. Before proceeding with this module, it is important that rehabilitation
counselors and other personnel be familiar with the medical stages of HIV disease.
(The reader is referred to the Medical Module) By way of review, recall that the
medical stages include the following: Acute/Primary; Early Stage (Chronic) Asymptomatic;
Early to Middle Stage Symptomatic; Advanced HIV; Late Stage Disease; (Recent:
Unknown future stage).
PSYCHOSOCIAL STAGES OF HIV DISEASE
Parallel with the medical stages outlined above, HIV Disease has several psychosocial
stages.
Psychosocial Stages of HIV Disease
Pre-HIV antibody testing: possibility of being infected.
Post-HIV antibody testing: Knowledge of being seropositive, asymptomatic stable
CD-4 count
Falling CD4 count with or without symptoms and/or prophylactic medication, increasing
viral load
Severe medical illness: AIDS, deteriorating physical and mental functioning,
pending and eventual death
Restored feeling of well being with change in attitude regarding future.for many
on protease inhibitor combinations
People with HIV/AIDS must deal with strong emotional issues. Each of these stages
can include a variety of emotional responses such as fear, shame, loss, grief, anger,
depression, feelings of dependency, and hope. Following is a discussion of the
potential emotional responses to HIV/AIDS.
EMOTIONAL RESPONSES
Fear
Fear and shame may prevent PWHIV from confiding in others and gaining support;
they may also be reluctant to seek help from AIDS organizations and the rehabilitation
system. Fear can arise in the infected person from the unpredictable nature of the
disease. Fear can aggravate depression symptoms and lead to feelings of hopelessness,
frustration and being overwhelmed. Fear can also arise in others, with repercussions
for the person with HIV/AIDS. Friends and co-workers may pull away because of irrational
fears of contagion or fears of a person's death, therefore leaving the person with
HIV with a deep sense of isolation and loss.
Loss
HIV has been called a disease of losses. Sadness is one outcome of experiencing
repeated losses. People with HIV/AIDS may have to grieve the loss of deceased lovers,
children and friends while at the same time mourning the loss of their own future.
With many successive losses, it can take the form of "chronic, unrelenting
loss". Other losses can include loss of partner, family, friends, co-workers,
mobility, strength, weight, appetite, and physical attractiveness, locus of control,
social role, income, employment, housing to name a few.
Grief
Three stages of grieving can be identified: 1) How did the person die? What
caused the death? Was the death sudden, gradual, painful, easy, etc.? 2) What
did the person mean to you? Were they a friend, partner, co-worker, parent, child?
3) How will you learn to live without the person? What do you need to do to go
on living? Anticipatory grief (i.e., grief about possible future losses) and bereavement
often result in anger and depression.
Anger
Anger may be directed at several targets simultaneously. The person with HIV
disease may blame the following: themselves for getting infected and the resulting
physical and mental loss; at family not being able to do anything; at one's support
system for lack of understanding, empathy or compassion; at society for their rejection;
and the medical establishment, for failing to find a cure. The fluctuating nature
of HIV Disease and the interface with the health care delivery system can cause frustration
and anger. The need to stay in control can sometimes produce behavior such as quarreling,
arguing, complaining, or being demanding.
Depression
Feelings of depression can be expected and surface as feelings of discouragement,
dejection, or helplessness. Signals that depression is being experienced include
disturbance in sleep, appetite changes, withdrawal from all activity, failure to
find pleasure in favorite activities, or difficulty in concentration. If depression
is unresolved, a maladaptive coping strategy is substance abuse or attempted suicide.
Psychological causes can include the anticipation of dying and death; the loss of
friends, lovers, parents, or children; the possibility of becoming disabled; and
the discomfort of becoming increasingly dependent on others.
Feelings of Dependency
Feelings of dependency can be experienced by people with disabilities arising
from a loss of functional capacity in both physical and emotional areas. Being dependent
on others brings on threats to autonomy, privacy, control, and independence and feelings
of helplessness and vulnerability that are often intolerable. This can have the
effect of being unwilling to ask for accommodation because of change in identity,
feelings of shame, not wanting to feel different or pitied.
Hope
Not all emotional responses to HIV/AIDS are negative. For people with HIV/AIDS,
maintaining hope is not merely a virtue, but a primary task. It appears that people
actually live longer when they can hope for and plan future activities, achievements
and relationships. Hope sustains them through the inevitable "bad days"
and increases the capacity to appreciate periods of good health. Feelings of hope
fluctuate daily, and sources of hope differ from person to person. Hope can be engendered
by developing or maintaining spiritual practices such as organized religion, twelve-step
programs and meditation. Hope is sustained by maintaining employment and relationships
with co-workers; becoming involved in activist groups; cultivating social and family
ties, and finding meaning in new roles or new experiences. The most important factor
in maintaining hope is active participation in decision-making. Any intervention
that enables a person with HIV/AIDS to feel in greater control of their health care
and activities strengthens their feelings of hope.
New Lease On Life For PWHIV
For those people whose lives are being lengthened by protease inhibitors, hope
for living longer can be a two-edged sword. Along one edge, there is hope for extended
life: Along the other edge is that they now have to think about living, about going
back to work (after having adapted to the idea they might never work again, let alone
live), economic survival, insurance problems, and/or medical benefits' problems.
Emotional Implications
The PWHIV may react in a number of ways including the following:
Skeptical
Confused
Survivor Guilt
Daring to be hopeful
Post Traumatic Stress Disorder
Numbness
Dizziness and disorientation
Uncertainty
Basic Problems With New Treatments
Not everyone is doing better
Women and African American death rates haven't gone down like others and they
are not responding to protease inhibitors
Once people have gone numb, they have difficulty feeling again
They tend to do better if they make a fuss
"I'm gonna live like I'm gonna live! " (Includes credit card debt, returning
to work, returning to school, making long-range plans)
Living with uncertainty
Dealing with truth and reality works better than fantasy
Wondering what did the future looked like before HIV?
Feeling left behind because they've lost time to the disease (e.g., career advancement)
Not knowing what to focus on know if they don't have to focus totally on HIV
Wanting to get away from dependence
Feeling bitter or guilty if not doing well
Needing to grieve realistically allowing themselves to feel it
Wondering what undetectable viral load really means? (for safe sex?)
Post exposure prophylaxis? (New public health policies)
HIV AS CRISIS
At any point along the HIV continuum, an individual can experience a crisis and
the appearance of any symptom can trigger a crisis. Crisis disrupts the emotional
homeostasis of an individual and challenges their ability to cope with the new stressors
of each progressive stage. The majority of PWHIV are able to manage their emotional
disequilibrium without excessive emotional, behavioral, or interpersonal disturbance.
However, as many as 20% are less able to manage their distress (Fishman & Crawford,
1996). While individuals in both groups (i.e., those able to manage and those who
don't do as well) recognize the threatening nature of HIV disease. Those who become
more emotionally distressed believe that they are extremely vulnerable and feel less
equipped to cope with the challenges they face. In addition, feelings of helplessness
and hopelessness are present along with cognitive distortions, misinterpretations
and a poor sense of personal control. Anxiety, depression and anger can easily escalate
stress.
COPING
Psychosocial Competence
Psychosocial competence is comprised of three variables: coping style, self-efficacy,
and self-esteem. These personality variables influence the way an individual handles
or copes with life events, particularly the stressful ones.
Coping Style
Coping style refers to the way a person approaches management of their life challenges.
It encompasses their thought processes, self-talk, emotional management, and behavioral
efforts to tolerate, reduce, or master demands that are above normal. There is general
agreement that there are three coping styles or approaches. Numbers 2 and 3 below
are the most relevant regarding HIV/AIDS.
Positive Coping Styles
1. Altering the problem directly
2. Changing one's way of viewing the problem
3. Managing emotional distress created by the problem
According to Hoffman (1996), research about which strategies are most adaptive has
shown that active behavioral coping (altering the problem directly) was related to
lower mood disturbances and higher self-esteem in recently diagnosed gay men. Avoidance
coping was negatively correlated with self-esteem, and positively correlated with
depression (Hoffman, 1996, p. 62). Hoffman also asserts that active cognitive-behavioral
coping that is paired with the ability to take time out from thinking about having
HIV is very adaptive. An example of this might be planning and carrying out well
though out changes in diet, exercise, or meditation.
The counselor needs to assess as best they can the coping style that the person used
before becoming infected with HIV. In addition, it is also be important to note
the following:
1. How is coping style changing as the PWHIV progresses through the disease?
2. What is the PWHIV 's vision of what successful coping is?
3. What is the counselor's vision of what successful coping is?
4. What is "living with HIV'?
Self-Efficacy
Bandura (1977) described self-efficacy as a belief in one's sense of control,
one's ability to perform some action or to control one's behavior or environment,
to reach some goal or make something happen. Self-efficacy is affected by one's
entire history of experience in mastering tasks and overcoming obstacles (Bee, 1994,
p. 328). The beliefs one holds about their own capabilities affect the effort they
exert, the choices they make, the perseverance they can maintain in the face of obstacles,
their thought patterns, their mood, and their stress levels.
An additional aspect of a person's sense of control is the concept of locus of control.
There is internal and external locus of control. A person with internal locus of
control believes that things happen to him because of what he has done himself. This
person feels more in control. A person with external locus of control believes they
have no control over what happens to them. Control for them is located in others
or in the system (Bee, 1994, p. 330).
Research has shown that people with a low sense of self-efficacy and a higher feeling
of helplessness are more likely to become depressed and ill. Self-efficacy is often
found to be situation specific, meaning a person could have high self-efficacy in
one situation and not in another. For example, feeling embarrassed or uncomfortable
asking a partner to use a condom would show low self-efficacy in that one area only.
Self-Esteem
Self-esteem is a concept that includes a person's sense of self, of their competence,
and their acceptability to others. It encompasses their internal self-scheme based
on their past experiences of success or failure and their interpersonal experiences
of acceptance or rejection. In regards to HIV, low self-esteem may be a factor in
not self-protecting themselves or others from HIV. No one has been able to measure
a drop in self-esteem as a result of becoming infected because self-esteem may have
been low to start with. However, with stigmatization, guilt, loss of a positive
body image, loss of roles, loss of work, and loss of social network, it seems intuitive
that self-esteem would be threatened (Hoffman, 1996, p. 61).
Coping Defense Mechanism
In order to maintain self esteem, people may use the following defense mechanisms
to cope with HIV/AIDS:
Coping Defense Mechanisms
Denial: Negating the reality of situation
Avoidance: Attempting to ignore ramifications of situation
Regression: Becoming more dependent, more passive, more emotional
Compensation: Counteracting limitations in one area and gaining proficiencies
in other areas
Rationalization: Excusing oneself for not reaching expectations
Diversion of feelings: Channeling unacceptable feelings into socially acceptable
behavior (can be constructive)
Denial can be an important mechanism for fostering faith in survival. Confronting
the denial of people living with HIV/AIDS may not serve positive purposes because
constructive denial allows for needed cognitive and emotional breaks from living
with the disease.
COUNSELING ISSUES
The psychosocial goal of counseling persons with HIV is to help restore the person
to their highest level of coping and functioning in behavioral, emotional, and interpersonal
areas of their life, both during and after a crisis. This holistic goal is an important
one to achieve especially if vocational rehabilitation is to be successful. Vocational
rehabilitation counselors are part of the team delivering services to PWHIV. They
may secure referrals for many of those services throughout the community, however
they should become involved in learning the status of many of these issues to assist
them in their vocational evaluation and provide meaningful vocational rehabilitation
services.
ASSESSMENT CONSIDERATIONS
Included in the assessment of PWHIV is the client's psychological competence,
their stage of disease, current medications, social and medical support, vocational
status, cultural and ethnic issues, and chemical dependency factors.
1. Medical condition
a. HIV status?
b. CDC criteria?
c. HIV-related illnesses?
d. Professional caregivers? (e.g., Who are their doctors?)
e. Prescribed medications and side effects?
f. Traditional vs. alternative treatments?
g. Response to treatment?
h. Home-based medical care?
2. Consumer's knowledge about condition
a. Well-informed or lack of knowledge? (e.g., Lack of knowledge in certain areas
may indicate psychological trouble areas.)
c. Beliefs, myths or delusions about HIV?
d. Willingness or reasons to survive?
e. Degree of denial or realism, nature of fighting spirit?
3. Cognitive functioning
a. Testing for Dementia? (Refer to Medical Module)
4. Psychiatric/Psychological History
a. DSM IV Axis I & II disorders. Note: Mood disorders, suicidal ideation
and depression are common.
b. Previous history with mental health professionals (Did it help, hurt, trust,
distrust?)
c. Current or past history with any 12-step program?
d. Use of any psychiatric medications (prescribed or street purchases)
e. Psychiatric hospitalizations and suicide attempts?
5. History of substance use or abuse (Refer to Medical and Cultural Diversity Modules)
a. What drugs, how taken, how much, how often?
b. Changes in drug use since HIV diagnosis?
c. Enrollment in drug treatment program?
6. Psychosocial background
a. Names of caregivers (family, friends, etc.)?
b. Family of origin vs. family of choice?
c. Degree of support from relatives
c. Relationship of consumer to caregivers (stable or not)?
d. Health status of caregivers (well, sick, elderly, young, HIV positive, HIV positive
symptomatic)?
e. Who to contact in an emergency?
f. Can the support network be organized?
7. Sexual functioning, past and current
a. How do they label themselves (sexual orientation)?
b. Changes in sexual activities since HIV positive, symptomatic, AIDS diagnosis
or opportunistic infections?
c. Currently sexually active?
d. Safer sex practices (consistent or inconsistent)?
e. Is sexual orientation and issue for this client (e.g., in workplace).
f. Is there perceived danger or negative consequences of anyone else knowing?
8. Nature of mental health provider contract or arrangements.
a. Is there an arrangement with a mental health provider (Are they in therapy,
group counseling, peer support)?
b. Expectations of mental health provider (Brief, long term)?
c. Expectations of the consumer?
9. Determination of capacity (i.e.,Cognitive ability to decide issues related
to the illness)
1. Capacity to make medical decisions?
2. Type of treatment?
10. Assessment of consumers level of functioning
1. Karnofsky Performance Status Scale (See Medical Module)
11. Family and Couple Issues
1. Impact of HIV/AIDS on family (i.e., family of origin, family of choice, breadwinner,
head of household,gay, lesbian, bisexual, straight, etc.)?
2. What are the things in the family life cycle that are impacted by HIV/AIDS?
3. Are normal developmental tasks blocked by impact of HIV/AIDS? (Family members,
consumers?)
4. "Coming out" issues for each family ?
5. Impact of affairs on couple and family?.
6. Mixed status couples? (HIV positive/HIV negative)?
7. Partner issues (Who takes care of whom? No medical benefits)?
12. Spirituality
1. How to pursue it?
2. Role of religion?
3. What about a memorial service?
4. What it means to die?
5. What is death?
6. What has death given them; may not all be loss?
7. Embracing possibility of helping professional's own death (e.g., what do I want
for my own death?)
13. Law and Ethics
1. Tarasoff considerations? (e.g., Duty to warn of threat of infection)?
a. Patient's duty to warn partners
3. Confidentiality?
a. Release of information?
b. Disclosure?
c. Case recording?
d. Partner notification?
4. Rights of seropositive clients to privacy?
5. Suicide? (Don't worry about mentioning suicide. Everyone who is HIV positive
has thought of it.)
a. Suicide hold?
b. Failure to prevent suicide?
c. Assisting suicide?
d. The right to commit suicide?
6. Domestic Partnership legislation?
7. Durable power of attorney (general, for health)?
8. Wills, trusts, insurance prepayment?
THROUGH THE LENS OF THE CONSUMER
1. A unique experience for each person
2. How to experience well-being (get informed, make a plan)
3. Background "noise" of HIV/AIDS is always there such as: relentless
wondering; how big is it? when will it happen? What will it look like? Even people
who are HIV negative are "People Living with AIDS!".
4. Each new stage is a crisis for consumer and loved ones. Each step onto a new
plateau is new grief, sadness and/or anxiety.
5. Obtaining enough information to make informed choices about treatment (e.g.,
AZT, DDT).
6. Each new physical problem can be a crisis and an opportunity for growth, self
discovery, and personal awareness. Heightened hypervigilance of all bodily functions
and new symptoms may be shown demonstrated by client, loved ones, and/or health professionals.
7. May be the first time client/consumer has looked at motivations and behaviors.
8. Where to go for support? Don't avoid asking because of trying to protect others.
Difficult to say things to people because speaking about the illness can be overwhelming.
9. Sexuality issues:
a. Newly HIV positive may be in denial or often shutting down sexuality unable
to let anyone in.
b. "Coming out" as HIV positive may be a new step.
c. Often knows appropriate behavior such as how to put on a condom, but doesn't
know how to handle negative judgments and attitudes.
d. Fear of HIV (e.g., Am I really going to be safe?)
e. Phobia of HIV.
f. Mixed status couples
10. History of loss and grieving
a. How well did they cope in the past?
b. What coping skills do they have now?
11. Support groups for consumers
a. Could be extremely helpful or harmful (e.g., upsetting if all the people who
were in your support group died, or members come in terribly upset about their symptoms).
b. What is a support system for each consumer?
12. Still alive right now - forget to live.
13. Having a "good death", some want it, some don't.
WHAT CONSUMERS MAY NEED FROM HELPING PROFESSIONALS
1. Be present
2. Do not try to "fix it"
3. Don't placate with "There, there,", "Don't worry".
4. Just be with the truth
5. Need to acknowledge own grief. (e.g., Find a place to do this outside of the
professional relationship. Consider carefully how and when it might be in the consumer's
best interest to do this in the professional relationship. It may never be appropriate.
6. Don't want to deal with therapist's stuff, it keeps consumers from opening up.
7. Authenticity especially since the consumer may be thinking "Thank you for
wanting to be supportive, but do you really get what it is that I am going through
here?"
8. Deal with your issues and attitudes toward HIV/AIDS so that you can be more
available and present for the consumer. Possible issues for the vocational rehabilitation
counselor might include the following:
a. Fear of the unknown?
b. Fear of contagion?
c. Fear of dying and of death?
d. Denial of helplessness?
e. Fear of homosexuality (i.e., homophobia)?
f. Over-identification?
g. Anger?
h. Need for professional omnipotence?
9. Professional self-awareness
a. Understanding the attitudes you may have toward HIV/AIDS
b. Identify areas of personal vulnerability to these attitudes
c. Educate and sensitize yourself to the issue and attitudes concerning AIDS and
to the lifestyle of persons living with AIDS and their partners.
d. Practice self-awareness through the use of peer support networks and supervision
sessions.
f. Identify limitations and know when to ask for consultation with supervisors.
g. Construct a peer support system with other rehabilitation professionals who
work with persons with AIDS (Refer to the Vocational Rehabilitation Services Module)
h. Reach out to health care workers and organizations that provide services for
people with HIV/AIDS
10. Consumers are the experts. Don't see self as "teacher" but as collaborator
in partnership with the person seeking VR services.