Charon says her greatest accomplishment is watching the children with HIV she has treated mature into adulthood with knowledge of how to live full and healthy lives. The challenges, however, are great, with many of her patients living with alcohol or drug abuse, and many others so overwhelmed by other issues in their lives that they cannot take their medications properly. She says a lot of her patients are illiterate and so the kind of help she has to provide extends beyond nursing care, like filling up their pill boxes and helping them with their paperwork. But Charon is committed to her patients and steadfast with her message even when her patients make mistakes. She says, "advocacy is one of the most important roles that a nurse must practice, especially when caring for those infected by this unpopular virus."
Tell us about your job and your clients.
I work in a family care center. I have individual adult patients who are still in their reproductive years. I have children and teens; we never ask the children to leave when they reach a certain age and we don't ask women to leave if their children die. We care for families. At other clinics, I sometimes see people fall out of care. This puts them at a higher risk for death and spreading infection. We get a lot of castoffs -- patients who have fallen out of care at other clinics because they didn't follow the rules. When our clients don't show, we call them, instead of punishing them.
What have been your greatest successes?
This disease is treatable if patients choose to take meds and be compliant. My patients are living longer, healthier and more productive lives, not like the earlier years when I lost so many children and their parents. I consider it a positive motivation that I have several pediatric patients who were infected prior to 1985, and who are still surviving and surviving well, going to college, working full time and having families of their own.
What are your biggest challenges?
Learning to manage the stress and sadness I face each day as a nurse. No matter how good a nurse I am and no matter how much education is given, some patients will continue to live a life of abuse and dysfunction of all kinds -- being an abuser, drugs, alcohol, unsafe behavior, not taking essential medications/treatments, etc. One of the most difficult parts of my job is when I know patients are not being safe with partners and that even after the best education, they continue their unsafe sexual behavior. I have so many women and men in my clinic that have been infected by a person who knew they were infected and didn't disclose or use protection. It is sad that so many decide not to take meds properly, or not at all, and suffer the ramifications. It makes their experience similar to the days when I didn't have any treatment to offer.
What do you think is the biggest problem people with HIV face?
The non-infected population continues to stigmatize and discriminate against those who are facing this taboo disease. A child with cancer is in a situation where everyone knows the diagnosis: meals are cooked, transportation is given, there are fund-raising efforts and the child is treated "special" at school. In contrast, the little ones with HIV or their families tell no one, not even immediate family members. They feel that the stigma associated with the disease will reflect badly on them. They attempt to cope all by themselves, in secrecy and silence.
What do you think is the biggest risk factor for HIV?
Ignorance. Thinking this disease no longer exists or that "it can't happen to me."
Do you think today's prevention efforts are sufficient?
Prevention education in the U.S. does not appear to have made the majority of those people most at risk change their behaviors. We need to offer honest health education to all children, starting in grade school. This education must go beyond abstinence education but include life-skills training and risk reduction. Abstinence-only education does not appear to be working and doesn't give our children the information they need to keep themselves safe if they do decide to become sexual (against better judgment). Children need well-rounded education, not just "don't do it."
What change would you like to see in HIV care?
Finding more primary care doctors who are comfortable taking care of HIV patients would help a lot. I also wish there were drug treatment programs that my patients could get into without a waiting period. The insurance side of care has become really tough. Our population is the working poor. They need help in every aspect of their care.
What counsel or education do you provide?
I have a lot of illiterate patients who I have to spend a lot of time with reading and explaining their forms to them. Everything has to start at the very bottom line. Some of them can't even tell me the name of their medication; they refer to it by color and size. We have a few clients who come in once a week and we fill up their pillbox for them. We know they can't remember, so we are willing to give them that extra care. We have one patient who can't swallow pills; our pharmacist will crush her pills, get her juice and wait for her to take them.
Is there a difference between the way you counsel new diagnosis and beginning of treatment?
Those circumstances often happen at the same time. Frequently, we have to start meds on their first visit. In the beginning, I give all the patients the same information, even if they don't have to start medication. We have a health educator and a social worker looking out for their overall well being; we all start patient education the first time we see them. It is easier when you know a patient for a while before they have to start meds, because then they are more familiar with normal counts and more comfortable taking advice from me.
If you were to be infected with HIV do you know when you would start your treatment?
When my T-cell count was 350, and with a viral load between 30 and 50,000. I see people after that not doing well or not being able to come back. Not everyone has the same situation when they start medications. We are starting to see patients who are resistant to HIV meds because someone who was treatment experienced and already resistant to the HIV medications infected them.
What do you think is the key to a good patient/provider relationship?
Trust and honesty. If the relationship doesn't have trust, they will tell me what they think I want to hear. I need to know the truth about their adherence. I need them to trust me with their secrets. Most of my clients have no reason to trust anyone. They have had bad experiences with bureaucracy or family members. Some patients' shame about this disease makes them not tell anybody. I have families who have HIV and their immediate family doesn't know. If I pass my clients on the street, I walk by them unless they approach me. I tell them that if they want me to acknowledge them in the public sphere then I will, but until then I will respect their personal space.
Bonding is just as important as proper medical care. We put together two Christmas parties a year. We also try to do a summer event, but that has been harder these past few years. We got a grant to get our patients to a theme park, and seeing all the patients and their families experience a day that they may never get to experience again, the sheer excitement of the whole thing, helps our relationship with them. It is so fun for me to see all these kids enjoy themselves outside of our clinical interaction.
What are your views on proactive patients?
I love proactive patients. I want them to look at the Web for information regarding their medications, and I make sure they check the sources so they only follow correct advice. I want them to know the basics of the disease. I want them to understand why we are changing their medications. I can tell them what's best if they don't understand, but it is much easier to work with educated patients. Our families also help out with the AIDS walk. One of our moms has taken it over the past few years and organized it on her own.
Tell me about clients who need the most care.
The hidden HIV-positive people in our country are the people who are developmentally delayed. Their cognivtive abilities could be very low and they need lots of hands-on help. Lots of clinics can't deal with this population. We will walk these people through the system. We make the time to do it. We will take people to the Social Security office and work with them through the system. We will sit there all day long expaining their meds. We fill their med boxes. We even crush weekly meds for one person. We have a growing number of people, in general, who we have to help with compliance. We also have a fairly significant population of illiterate people, from across the spectrum, who really need hands-on care.
How do you keep from burning out?
I think you need to be an experienced nurse to be a nurse in HIV. A good family life is key. Your family needs to be comfortable with your job so they don't worry about you all the time. Had I been infected, my husband is immediately at risk to be infected as well. I take the time during my commute to separate myself from my job. I don't usually play the radio, but I think of all the things that I needed to get done and then I move my thoughts onto my family. I completely separate my family and work life.
How has your life changed since you started in nursing?
I try to never to take life for granted. Each day is special and I don't know how many days I get in this journey called life. Just learn to take it as day by day.
What do you do in your spare time?
I love to garden. I can pound the dirt all day. I really enjoy some of the things about gardening that other people hate. I like weeding, because you can do it mindlessly.
What kind of community do you live in?
I live in a rural farming community east of Columbus. We have about an acre. No one has fences out this way, so everyone's animals just come and go. I have two cats; they climb trees and chase raccoons. They follow me all around the yard.
Do you ever want to live somewhere else?
I always think where I'm at is the best place at the time. I would want to go somewhere there is warm weather and a beach. I grew up as a Navy daughter, so I miss the ocean. When my husband told me he was moving to Ohio I didn't know where it was. I only knew the coasts.
What kind of books do you read?
I wish I had a chance to read more. Mary Higgins Clark if I need a little mystery, or Nicholas Sparks, because he's an emotional writer about love and feeling. I mostly read the paper and nursing journals.
What kind of music do you like to listen to?
I like all kinds of music. My favorite and what I grew up with was country western. Patsy Cline, I love all her old music, I didn't know anything else was out there until I was 15 or 16.
What has been your biggest adventure?
My life has been a big adventure. Because my father was in the Navy, during my first 20 years I moved almost every year, I graduated from high school in Japan. My whole life revolved around was where we were going to live next. Since I got out of high school I've been in central Ohio.
Who are the most influential people in your life?
My husband. I wish everyone could meet him. He's my hero -- he's an ex-military man, like my father. He went to Vietnam several times. I praise everyone who gives their life to their country, like my father did.
Would you like to dedicate this award to anyone?
To all my patients -- to all those living with this ugly virus and to all those who have passed on. I would be nothing without them. I've had little girls teach me about angels and how it's okay to lose your mom on Mother's Day, because it's the day God made for mommies. I had a little boy who was such a bright light; he really liked orange, to eat and to paint. He was a week from his third birthday when he passed. They've all taught me so much.