HIV+ patients

[iaminvisible8888]

Does anyone work with HIV+ people?  Either by referral or at a health clinic?Since one of the first things these people most often lose is touch, I was wondering how prevalent this work is done.Would you knowingly work on an infected person?  If not, why?

 

[GeorgeRock]

HIV+ patients

I do volunteer work with out local ASO (Aids Service Organization). I have many regular clients who are living with hiv/aids. I never had any qualms about working with these wonderful folks, I see no risk to myself. I know alot of therapists, some I know personally, who said they would NEVER knowingly work on them. I let them know FAST that they (the therapist) are more of a danger to THEM than they are to the therapist. A weak immune system should be no reason to oust a group of people. I'm glad you brought this subject up, it's kept quiet much too often! :}

 

[Mejo]

I don't know of any of my clients being HIV+ but I wouldn't have a problem working on them since I use the same precautions for everyone.  Fear of the disease is a factor in people not disclosing their status.  I work in a "small town" atmosphere and I am sure anyone there who is positive is guarding their status fiercely.  

 

[Alison]

Another question and what I think is a legitimate concern if you do work on an HIV+ clientele even as a volunteer in a clinic.  Would you lose clients if it became known you worked on HIV+ people?  Probably not much of an impact in a larger town or city but most likely impact a smaller town.  Thoughts?

 

[mom tree]

I thought about that and I don't think I would advertise that I am comfortable working with HIV+ people.  What I was thinking was to send a letter of introduction to local doctors, counselors, etc. letting them know that I am not hesitant to work on HIV+ clients.  Then maybe they could refer patients who want to reveal their positive status but are afraid to.  I wouldn't do this as a way to exploit HIV+ people, my nature is to want to help the "under-dog".

 

[Dnt TriPP]

I have been looking for some info. on massage with people with HIV/AIDS and there is such a wide range of attitude concerning it...and I am looking for some help with this.

I am going to be working with someone who has AIDS who has chosen hospice care, and therefore will not be on any medications other than pain meds, and as the disease progresses there is more and more risk that skin lesions will develop, and obviously the immune system is going to be at an all time low.

I just don't know how to approach this, and the volunteer coordinator I am under has told me to use gloves when working at at all times, and she said she normally tells people not to use gloves.

Honestly, this is my first experience with this, and I'm nervous. I want to be there totally for the patient, and not have fear surrounding our interactions.

What is your take?

Thanks for anything you can share.

 

[Toni]

as long as you don't massage over any lesions you don't need to wear gloves. People who are HIV+ need touch like anyone else and the feel of a glove is not the same as skin.

 

[Crow]

Gator,

I feel a bit mortified that you have this concerns. But I salute your effort in putting this questions out in the open. I have a feeling that a lot of questions that arise around HIV are related to ignorance of the facts about the disease. First, just to clarify. People with HIV/AIDS do not "lose touch". Some patients, not all, develop peripheral neuropathy, which is a sensation of tingling or numbness in the feet. To say that they "lose touch" is an exaggerated and erroneous statement.

I wonder, would you work with anyone else with a chronic disease? Someone with diabetes for example? Would you work with the elderly or the frail? Would you not work with someone if they are terminally ill? How is it different with someone with HIV? What are your concerns? Why our standards of compassion and professionalism don't apply to them equally? They way your questions are presented makes me wonder if you are dealing with your own bias and phobias. After all, you are not asking if there are contraindications, or how bodywork benefits these patients. But you clearly ask if someone knowingly would refrain from working with someone who is HIV+. And quite frankly, I think that the only possible answer as to why anyone would not work with these population, is fear, ignorance, prejudice, and yes, discrimination.

As to the question about whether you would lose clients if it became known that you work with people with HIV/AIDS. First of all, why would should it become known? Do you disclose to your clients the particulars of the health conditions of other clients? Don't we owe ALL of our clients confidentiality and respect for their privacy? And if I was going to lose a client because somehow they found out that some of my clients are HIV+, I say good riddance, I would not want to work with people like that anyhow.

I think it would be helpful to question yourself seriously about what are your fears. And that to educate and inform yourself about the facts of the disease. Don't let fear overtake you. Think with your head, and let your heart guide you when you work with your hands.

And just to add to your questions, would you let a practitioner who is HIV+ work on you? Food for thought.

Jaime

 

[Master of Eternity]

It's interesting how we all put our own story to why or how questions are asked around here.

I didn't read into Gator's questions as personal concerns, but merely questions for the group to discuss since it's a segment of the population usually pushed aside (with gloves on). And the comment about touch, I read that as people living with HIV/AIDS lose touch as in people stop touching them not that they lose feeling in their own bodies.

 

[verscharren]

Ok, my first reaction to this thread was, "What is this, 1985?" I feel sad that basic education around this issue still has to be done, and that there may be places in our country where a huge stigma still exists.

The question regarding working with someone in the late seforum.xxxes of AIDS (which is not the same as being HIV+) is interesting to me, I am unsure of the answer but am sure that there is already an established best practice somewhere.

Anyway, to address the OP:

Does anyone work with HIV+ people? Either by referral or at a health clinic?

Yes, I work with poz folks. Don't you? If not, how do you know?

Since one of the first things these people most often lose is touch, I was wondering how prevalent this work is done.

Since I read this as referring to other folks not wanting to touch poz folks, I'm hoping the OP will clarify this statement as to where on the planet we are talking about.

 

[jinenglish68]

Jaime, the questions presented in this thread are painfully relevant, and I only experience them as mortifying in terms of how how sad and horrible this disease is on an individual level for those living with it and on a global level.

It's clear you have strong feelings about this, and I appreciate you sharing, but attacks do not foster a learning environment.

You frankly state that you think the only possible answer as to why anyone would not work with those with HIV/AIDS is fear, ignorance, prejudice and discrimination, and then do nothing to resolve these barriers.

As a student and soon to be professional I appreciate the openness of this board to bring valid concerns, whether someone "likes" that I have a question or concern or not.

You seem to probably be someone with a lot of valuable information to share, please do!

As for me, I'm still not sure how to approach the issue as a student and new volunteer of being told to wear gloves at all times, but then also told that there is nothing to worry about. I have no experience and I'm admittedly pretty ignorant when it comes to this.

I'm not exactly comfortable with disregarding what my supervisor has told me to do when I'm not sure of the risk myself. This is somebody in the active disease process who is symptomatic. Also, I honestly, ignorantly do not know if I have some tiny cut on my hand that I might not even be aware of if that is going to be a route of entry for HIV. What I mean is that if I'm massaging his arm/hand and I have a small cut and he has a new cut or developing lesion no one is really aware of yet that could be really bad timing. Hopefully I'm explaining this correctly and clearly enough here. I've tried to find answers in books, but I haven't been able to find that specific of an answer thus far.
So I hope these questions don't get me blasted!
My concern for the patient and compassion actually are fully intact. That's why I want to be there and am making myself available in the first place.

Thank you!

edit: EgoMagickian, sorry we cross posted. Thank you for acknowledging that HIV+ and full blown AIDS is a different presentation...I'm not sure how much literature or established protocol is out there on this, but I'm going to keep looking!

 

[Brodo]

I think you'd probably get mor candid responses if this was in the Private Section.

 

[Pompal 09.]

If you look at the post dates, you'll see that Gator started this thread 4 years ago & is no longer looking for advice. Healingtime is the one who needs her questions answered. She followed MassagePlanetL member rules & bumped an old thread, instead of starting a new one. With that in mind, I hope those of you with experience & information to share will give Healingtime the advice she seeks (without judging her for not knowing everything in advance).

 

[gc1j]

Bliss, thank you for clarifying, I had not paid attention to the date on the thread. Yes Healingtime, I have strong opinions about the topic, and although I may be blunt, it doesn't mean I am attacking you or Gator.

HIV is extremely difficult to catch or transmit. You can't get it by touching someone, even in the most advanced seforum.xxxes of the disease. It requires an exchange of bodily fluids. The patients bloodstream would need to make contact with yours. You would need to have fresh, open unhealed cuts, and the patient would need to have open lesions which are bleeding or exhibit a discharge or secretion. This is common sense, in a situation like this you probably would not touch someone else, regardless of HIV status. Patients with AIDS in an advanced seforum.xxxe frequently suffer from Kaposi Sarcoma, which exhibits lesion on the skin. They can be flat or lumpy, ranging in color from brown to reddish purple. There is no risk for you in touching these lessions. KS can affect the lymph nodes, which can cause Lymphodema, or swelling of the limbs. Massage therapy would help to alleviate this symptom.

Again, there would need to be an open and bleeding sore or lesion in contact with an open wound in your body for you to be at risk of infection. If these kind of obvious lesions are not present, you need not be concerned. I agree with calmhead, the feeling of gloves in the skin is not the same.

It seems like you might want to have a more extended talk with a physician or nurse at the facility. I am not sure a volunteer coordinator would have enough knowledge to guide you, particularly when admiteddly she is giving you advice that is the opposite of what she tells everyone else. Maybe she told you to wear glove to assuage your concerns.

There is plenty of literature available about massage and bodywork for people with HIV/AIDS. Try a google search. Here are some links that you migth find helpful. The "massagetoday" link includes an extensive discussion about gloves vs. non gloves.

Jaime


http://www.lifepositive.com/Body/body-holistic/AIDS/treatment-of-aids.asp

http://www.massagetherapy.com/articles/index.php/article_id/273

http://www.thebody.com/content/art1954.html

http://www.massagetoday.com/mpacms/mt/article.php?id=13288

http://www.dummies.com/WileyCDA/DummiesArticle/Knowing-When-Not-to-Massage.id-948,subcat-FITNESS.html

http://www.integrative-healthcare.org/mt/archives/2006/12/massage_therapy_1.html

 

[rayzir]

I suggest contacting one of these orgs:

http://www.maitrisf.org/
http://www.iepclinic.com/
http://www.shanti.org/
http://www.ucsf-ahp.org/
http://www.quanyinhealingarts.com/

 

[Land in Sicht]

Thank you everyone! This feedback helps, and I will look at the links provided...thank you much for those.

Pueppi, I did not even know there was a private section! How do I get there?

Thank you movetoheal, for responding again!
I realize it takes transmission of body fluids, but if there's an opening on either one of us, it's not something I just want to assume will be fine and take a risk with it, if it might not be, considering the implications if I'm wrong. It helps to hear what you've shared. I've read about KS, but until I read this I didn't know they could be flat really. I think I've probably just seen the exaggerated/obvious photos of KS that are usually provided with medical descriptions. It's just helpful to know what to be aware of and look for. I really appreciate you sharing that.

I know the volunteer coordinator didn't tell me to wear gloves due to my concerns because she told me to wear gloves before I ever mentioned any concerns at all, and right after we had met with the patient (in the parking lot.) This is her first case of working with a patient with AIDS as well, within her role with hospice, and she's been there a year.
However, she spoke with one licensed massage therapist who told her that massage would likely make his abdominal pain worse, as that is what he was experiencing intensely last week (and may be still, I will know when I go to visit this week if anything has changed.) So this is all a learning process for us. She spoke with her head supervisor with her own questions and her supervisor said it would be ok as long as we took the Universal Precautions. That still didn't really help me very much in determining gloves/no gloves. So maybe it's just a personal decision?

I would really like to be able to have a conversation with a dr. or nurse at the facility, but they are not readily available to meet or speak with.

EgoMagickian, thank you too for the links!

I really do appreciate everyone's feedback and viewpoints and info. I hope after I walk through this very new to me process of working with hospice, and also handling the disease process of AIDS, I will be able to help someone else who might be new to it all with questions...So thank you very much for being here and not hating me for this!!!

 

[El stupido hombre blanco]

Quite welcome, please let us know what you find out.

 

[Rainbow Child]

Make sure to come back and share with us your experience working with this patient. It might just turn to be one powerful learning experience. Working with people with AIDS and HIV has been one of the most challenging and rewarding experiences in my career. As an aside note, my handle here, "movetoheal" comes from my earlier experiences working with this population. Back in 1990 I created a program at an organization called Movement Research in New York City. The program provided free classes in movement and somatic practices for people with AIDS and HIV. At first it was only me teaching the classes, but eventually I gathered a group of teachers who volunteered their efforts. The name of the program was Move to Heal.

Jaime

 

[Low]

I have been reading the links, and feeling more comfortable as I do. Education and information is so helpful for me. Sometimes the biggest fears can be of the unknown. I believe that in this work (of hospice or just the work of life) people are brought into our lives or we meet at in intersection for a reason. To learn something, to give, to find, or to 'just be',...to me it's all about being human and this greatness of it all. So I am taking all my lessons from this experience and really paying attention to them, and I will definitely share about this experience for anyone who is interested. It already has been powerful for me.

Move to Heal, I'm glad you are here and we've had the chance to "meet". I could tell your response was coming from a very passionate and knowledgeable place. The program you created sounds really awesome. I hope that you will share more too if you are comfortable!

Much peace to all.

 

[prettypriyanka]

massage can help HIV at any seforum.xxxe including when it turns into AIDS. The stress reducing part of massage can actually help the patient increase their Tcell count on their own. When I was still a student, I worked on someone who had AIDS once a week for 12 weeks and he reviewed to me his T cells were on the upswing. Was it the meds? was it me? was it a combo? I don't know but research has shown massage does help.

Point to note - one thing to be careful of when working on someone who had HIV is their meds. Because of muscle wasting, some patients use a testosterone cream. This cream and the testosterone can be introduced to your body by contact. If at all possible, try to ask the client to not put on the cream the day of the massage until after the massage. Although, you will have to take the clients word on that! - my client hated the way the cream smelled and refused to use it anyway.