Report #1
April 5, 1997
Pacificare Volunteer Training
Pacificare is a nonprofit organization which recruits and trains volunteers from the community to become a buddy for someone who is living with HIV/AIDS. Pacificare works closely with Life Foundation which is Hawaii's largest nonprofit AIDS service organization. Life Foundation provides comprehensive support services to men, women, and children with HIV/AIDS and preventive education for the community. The clients at Life Foundation are shared with Pacificare so they can have the opportunity to pair up with a buddy. Volunteers at both Pacificare and Life Foundation are needed to assist clients with transportation, housecleaning, yard work shopping, and meal preparation. Pacificare provides a one-day orientation and a two-week training program every other month at their office on Keawe Street. The training program which I attended during the first two weeks in March took place on Tuesday and Thursday evenings from 5:30pm to 9:00pm, as well as on Saturdays from 8:30am to 5:00pm. The training was conducted by the staff at Pacificare and various speakers including a psychiatrist, lawyer, social worker, buddies, clients and nurses.
I chose to participate in Pacificare's buddy training program primarily because I'm pursuing a career in the nursing field. It is inevitable that as a nurse, I will come in direct contact with people with the HIV and AIDS disease. I feel that with the knowledge and firsthand experience gained from the training and the relationship with a client, I will be prepared to work confidently and empathetically with infected patients. Fortunately, I've never had any personal nor professional experience with the HIV/AIDS disease. Although I worked with different problematic populations in the past, such as criminal offenders, emotionally disturbed children and mentally ill adults, I have never worked with clients whom I knew that had the HIV/AIDS disease. The mentally ill population, which primarily includes homeless substance abusers, is especially susceptible to contracting HIV through shared needles and unprotected sex. Surprisingly, the clients whom I worked with for two years in Honolulu were either unknowingly carrying the virus or uninfected. Therefore, I arrived at Pacificare with very little knowledge about the disease.
Due to a class on Tuesday nights, I arnved at Pacificare at 7:30pm, which forced me to miss the first two hours of that evening's session. Fortunately, I only missed the pupus, registration and introduction. There were eighteen other volunteers and staff members in the Pacificare lounge room. The staff members include George, the Executive Director, Becky, the Volunteer Coordinator, Don, the Office Manager and Nurse Nancy. Immediately, I noticed the diversity among the volunteers. The group clearly represented different cultural and ethnic backgrounds as well as different age and gender.
A speaker was addressing the importance of trust when I walked in. The group was paired up and engaged in a touch exercise. The speaker asked the group to take turns in touching our partners (in the face only) for a couple of rninutes. We were also expected to trust our partners by allowing them to touch us in the same way. After asking permission to do so, I proceeded to touch my partner by massaging her temples. I felt incredibly uneasy and nervous during this exercise since I'm relatively uncomfortable giving and receiving physical affection from anyone other than my boyfriend. It was particularly more difficult for me to be on the receiving end. I couldn't relax, let alone trust someone I hardly know to enter into my personal space and touch me in an intimate way. In my opinion, it was a rather strange and inappropriate exercise which probably put others besides me, in an awkward situation. Touch is a very personal and intimate expression between two people. Unless I'm close with the person, I normally do not invite him/her into my personal space. Once the exercise ended, I felt completely relieved.
Following a break, another speaker talked to us about diversity and values. She enlightened the group about cultural and personality differences by staging a scenario for us to act out. One half of the group were taken outside and given instructions to play a member of an imaginary cultural group called the "majorians" who work hard, talk loudly, look directly into people's eyes when speaking to them and take offense to people who do not make eye contact with them. The other half of the group were told that they belong to a group called the "minorians" who are, in contrast, shy, mistrustful, and uncomfortable making eye contact with people. The speaker then instructed all of us to come together and engage in a conversation with someone in the other group. Until this point, neither group had any idea of what the other group was supposed to be like. As soon as I began speaking to a "minorian" in my aggressive "majorian" way, she immediately retreated and avoided making any sort of eye contact with me. I realized that my "majorian" way was making her very uncomfortable, so I began to lower my voice and ease up on the eye contact. As a result, she seemed more willing to converse with me. Later, the speaker let the "majorians" on a secret about the "minorians". The minorians were supposed to be a group of people who avoided eye contact with people because in their culture, eye contact has sexual connotations.
The exercise on the majorian/minorian role-playing was intended for us to recognize the importance of cultural and individual differences. As a "majorian", I realized that I had to adjust my ways in order to make the "minorian" feel comfortable rather than waiting for her to adapt to my culture. This scenario can extend to the buddy/client relationship where two strangers bring different backgrounds, personalities and lifestyles. A client with the HIV or AIDS disease who expresses anxiety and fear is much like the "minorian." Therefore, it seems important for the buddy to understand the vulnerability of the client's situation and make their relationship pleasant and non threatening for the client.
During the wrap-up where the group was encouraged to reflect on the evening session, I learned a few things about some of the other volunteers. For example, one of the women revealed that she is a lesbian while a male volunteer confessed to being a homosexual with substance abuse problems. Others had close friends who are living with the HIV/AIDS disease. Strangely, I began to feel detached from the group as they revealed their personal stories. I didn't have much to reveal to the group other than the reason for being there. I almost wished that they kept such personal information to themselves rather than to a group of strangers. But, I guess some people have a compelling need to do so.
Fortunately, I was allowed to skip my English class Thursday night because Pacificare scheduled to have a speaker give us an overview on HIV/AIDS. During this session, I learned quite a bit about the HIV infection and its life cycle, opportunistic infections and anti-HIV drugs. First of all, HIV is ONLY spread by the blood, semen, vaginal fluid, or breast milk of an HIV+ person. Without contact with any of these fluids, a person cannot get HIV. I learned that the most important mode of transmission is blood. In addition, semen is a better means than vaginal fluid, which indicates that vaginal intercourse is more likely to transmit HIV from MALE to FEMALE than vice versa. Women then become a prime target for HIV when they engage in unprotected heterosexual sex.
The human immunodeficiency virus (HIV), which is the AIDS virus, is a retrovirus which transcribes its RNA into DNA inside the infected host cell. It only targets T4 cells (T Helper cells) in humans, which I find absolutely fascinating about viruses. Once the virus enters a T cell, its enzyme known as reverse transcriptase, transcribes RNA into DNA. Then the viral DNA becomes part of the DNA of the T cell and makes copies of the virus. Within the period of ten days to six months, the virus develops very quickly. The time when the virus is circulating around the body in high numbers, is called VIRENIA. The HIV infection takes place in three stages: 1) Category A; 2) Category B; 3) Category C. In the first stage, the virus affects the lympathic system particularly the lymph nodes, causing Iymphadenopathy (swollen Iyrnph nodes). In other cases, there may not be any symptoms. The virus can hide and not be detected for a long time. In Category B. T cell count plays a significant role where it drops below 500 cubic millimeter (normal T4 cell count in adults is about 1,000 cubic mm of blood). When the T cell count drops, the chance of developing opportunistic infections increase. Since the immune system is weakened, common opportunistic infections occur, such as vaginitis and thrush (Candidiasis) in the mouth and throat, all caused by Candida albicans, Other infections include shingles and oral hairy leukoplakia, which look like white patches on the sides of the tongue. Finally, Category C is known as clinical AIDS which is the last stage of the HIV infection. The T cell count is 200 or lower and the immune system collapses completely. Basically, at this point, HIV has a "free ride." Due to the collapse of the immune system, many more opportunistic infections develop in this stage. Some of the more important infections associated with AIDS are Candida albicans infections of the esophagus, anus and lungs; Kaposi's Sarcoma (lesions on nose, eyelids, ears, scrotum and feet); Pneumocystis Carinii Pneumonia (fever, fatigue, weight loss, cough and shortness of breath); tuberculosis; herpes; and Cytomegalovirus (CMV) diseases of the brain, retina, esophagus, lungs, liver, and colon. Patients actually die from AIDS-related infections and complications rather than AIDS. The speaker showed us a picture of one AIDS patient who had extremely long eyelashes ( 1 inch long) among other infections. Although long eyelashes are not common, I couldn't believe how that may have happened.
We were introduced to a new group of anti-HIV drugs known as protease inhibitors. The HIV has an enzyme called protease that cuts up proteins so they can be reassembled to make more copies of itself. The protease inhibitors work to stop the viral synthesis. Since there are so many different drugs, the names weren't mentioned other than AZT (zidovudine), ddI (dideoxyinosine) and ddC (dideoxyctidine) which are nucleoside analogs that inhibit the viral enzyme, reverse transcriptase.
The speaker also passed on several important and interesting statistics on HIV/ AIDS. For example, in 1995, AIDS became the third leading cause of death for women ages 25-44. Women are the fastest growing group of people with HIV. Those who are at greatest risk for HIV include women who are black and Hispanic, live in urban areas and are in their childbearing years. In Hawaii alone, about half of the women with AIDS are Asians and Pacific Islanders. The major route of HIV transmission for women since the beginning of the epidemic is IV drug use, while 54% of women in Hawaii are more likely to acquire HIV from having sex with men THAN from injecting drugs.
According to the speaker, it is actually very difficult to get HIV. The virus is extremely fragile and once exposed to ultraviolet rays (sunlight), it is relatively harmless to humans. The human body also has many barriers which make it very hard for HIV to infect the skin, such as sweat and enzymes. Once infected however, a person can be asymptomatic for an average of 10 years! Early symptoms of HIV can be mistaken for other illnesses, especially in women since their symptoms are gynecological.
As a woman who has experienced several gynecological problems, I'm left feeling completely distressed. Even though I tested negative for HIV two years ago and stayed with the same partner, I'm still not convinced that I do not have HIV. I firmly believe as everyone should, that ANYONE can get HIV. It only takes one sexual encounter to contract the deadly virus. If I had known what I know now about HIV, I would have undoubtedly avoided certain behavior and situations that may have put me at high risk. Perhaps, the real danger of contracting HIV lies in ignorance rather than deliberate carelessness. There just isn't enough HIV/AIDS education being mandated on school grounds. Due to peer pressure, raging hormones and lack of knowledge, teenagers are particularly vulnerable to making harmful and destructive choices. Many teens practice unsafe sex which place them at tremendous risk of acquiring HIV.
The final speaker of the evening was a gay lawyer who talked to us about legal issues and confidentiality. I learned that under current state laws, the records of any people with HIV/AIDS which are held by public agencies, doctors, health care providers and third party payors are kept strictly confidential. In addition, these people do not have to release information about their HIV status in order to obtain housing, employment or education. I was rather disturbed after hearing this information. Personally, I feel that with a serious epidemic such as HIV/AIDS, the general public should be protected and informed in case of emergencies. We can't trust everyone who has HIV/AIDS to be careful and concerned for other people's safety as well as their own. I feel that the public, particularly in the schools and workplace, has a right to know since there is a possibility of danger that people can be harmed in certain situations involving blood. If I had HIV, I would want the public to know that I was infected because I'd feel it's my duty as a member of the community to protect others. I believe that it would be utterly selfish to withhold vital information in fear of people's reaction or possible discrimination. Many people may feel that it is not necessarily anyone's business except their own, but others CAN be affected, which then WOULD make it their business.
Saturday's agenda was packed with important issues, such as universal precautions, psychological impact of HIV, substance abuse and communication. The staff have been incredibly generous with food and beverages. On Saturday, they provided the group with continental breakfast, pizza for lunch and snacks throughout the day. I really have to take some time out here to express my gratitude and appreciation for the staff at Pacificare. They have been exceptionally warm and receptive to us that it has been such a pleasure for me to be there. It truly takes dedication, heart, and compassion to do what they do. I admire them for making unselfish choices and getting involved with a charitable mission. Anyone who becomes part of an organization like Pacificare or Life Foundation is driven by one goal only-- the desire to help others as opposed to money or other materialistic gains.
In a buddy/client relationship, it is important for both parties to know how to use necessary precautions and be aware of harmful situations. For example, a buddy should always wash his/her hands when entering a client's home because buddies can transmit unwanted germs to their client. If a buddy is sick or coughing consistently, the best thing that he/she can do for the client is to stay home. The clients who are already immuno suppressed, are especially vulnerable to diseases, like the common cold. During routine housecleaning, it is recommended that the buddy wear latex gloves to protect him/herself and the client. Sponges which are a common fomite, should be disposed of on a weekly basis. When cleaning pets, one should always wear a mask and latex gloves since pets can carry many harmful microorganisms. For example, cats can carry the protozoan Toxoplasma gondii which causes toxoplasmosis (disease of the blood and lymphatic vessels in humans) and an organism that causes cat-scratch disease (swollen lymph nodes, fever and rash in humans). Sharp objects around a client's house should also be handled very carefully with gloves.
Nurse Nancy gave us a bunch of scenarios that required certain precautions and then asked us to judge what they might be. For example, if poked with a possibly contaminated object, the buddy is advised to get antiviral treatment within one hour, even though the chances of becoming infected with HIV are minimal. If there are broken pieces of glass and blood on the floor, the buddy should immediately put shoes and gloves on, then sweep up the broken glass with cardboard or other similar items and dispose of the glass in a covered plastic container. Finally, the blood can be wiped off using a solution containing one-part bleach and nine-parts water. What happens when a client's hand is cut and bleeding? First of all, the buddy should ask him if he/she has any allergies. Next, the buddy can ask the client on how the wound should be addressed. If the wound is serious, there is always 911.
I suddenly felt uneasy about becoming a buddy. So many "what if' questions were running through my head. For example, what if my female client was not aware of a lesion on her body and sat in my car? What if I was wearing shorts and shared seats with her unknowingly? I began to feel extremely anxious about entering a client's house, doing her laundry or cleaning her toilet. The precautions just didn't mean enough for me. I realized that my fears must be resolved before I can commit to a buddy/client relationship.
The next speaker who addressed the psychological impact of HIV changed my perspective somewhat. He was a gay psychiatrist living with HIV. Immediately, he pointed out that the HIV disease is a chronic, not terminal illness. He revealed his personal experiences with HIV and how much it has changed his life. Amidst the feelings of isolation and anxiety about the future, he had to deal with problems he never faced before. For instance, he had trouble selling his beautiful condo because people refused to buy it once they found out that he was HIV+. He also faced the embarrassment of his houseguests refusing to eat his homecooked meals. In terms of the buddy/ client relationship, he stressed the importance of a client's needs, which include the need to have control of his/her life. Suicide is common among people with HIV/AIDS particularly when they experience loss of family, friends, job, identity, and lifestyle.