Concerned about bias/predjudice when seeking home health services

[DLKeys]

First and foremost, I apologize if this has been posted in the wrong forum. I looked at all of the available forums carefully and this seemed to be the most appropriate area to express my concern. I do not think there is a quick way to express this. I try to be as curt as possible though, especially in regard to the events that transpired before this happened to us.

I am the mother of a 24 year old male-to-female transsexual who was admitted to the hospital three and a half months ago after experiencing back pain that developed into very severe leg weakness that quickly prevented her from even being able to carry her own weight. Her condition worsened for another two weeks, her legs were paralyzed completely for almost two months, she lost upper body coordination, experienced a great deal of pain, and developed very severe continence issues. Within just a few days of her admission many causes were ruled out and the diagnosis as it stands now is 'idiopathic transverse myelitis.' It goes without saying that this is very much for us to handle given the circumstances. The only real solace we have right now is the word of the doctors that there is still a significant chance of her making a full recovery. We can only all hope that things turn out for the best and do what we can to help her recover at this point.

Between myself, my husband, and my older daughter, we were able to remain very involved throughout her recovery to this point. My workplace was even so permissive as to allow me a month off now that she has been discharged. I will also be working shorter hours when I do go back to work, which is worrying but I feel I have no choice for now. In the three weeks that she has been back home with us however, I have begun to understand that this is going to be more difficult than I even could have ever imagined. While she didn't suffer mentally(emotionally is another story...) for this at all, she is still having to learn how to take care of herself all over again. She is capable of repositioning herself most of the time in bed(with the aid of a trapeze looking device), but she is not yet capable of transferring to a wheelchair or from one. She also suffers from a very significant amount of neuropathic pain on a regular basis. The medication the doctor prescribed does help her with it, but it also seems to make her drowsy and ambivalent. She is almost entirely without control of her bladder and bowels. Catheters have been necessary to drain her bladder at times and she often can not tell whether or not she has to go to the restroom. She wets herself in varying amounts everyday, but the bowel movements are much more irregular. The first week she was back I just tried to put a towel or a big underpad we had left from training our dogs(it looked just like what they had at the rehabilitation center after all). It became evident that wasn't going to be an option quite quickly, as her clothes were still being soiled, and it made her extremely averse to even letting me take her outside around the block to get some air for fear of embarrassment. We've since put her into diapers to manage the problem, which is difficult for a number of unique factors that lead me to the concern which spurred this topic.

While she has been living as a woman with little to no incident for the last two years, she is still anatomically male down there. Otherwise, she looks, and sounds feminine on account of(according to her) her having started at such a young age. She was even about to be able to finish her bachelor's studies and had been working for some time in an environment where she was known as female. This did not post a big problem in the hospital, but she did tell us a few times that she was insensitively referred to as a man by people who were helping her with her hygiene needs. She did seem upset about this but at the same time she has expressed that she had developed the ability to cope with it from past experience.

When I return to work, even part time, it is going to be absolutely necessary that we receive some sort of help in order to take care of her needs. She is still attending outpatient rehabilitation in addition to the other things mentioned, so it is necessary that somebody is available to help her when we can't. As far as I know, there are many home healthcare services around here that are willing to provide this kind of care. What worries me so much is the amount of trust that we are going to have to place in whoever we hire to do this. This is somebody that will be coming into our home and will very much be in charge of her well-being for many hours at a time. In addition to that, I am not sure that I can trust the word of the consultants who say that there will be no issue with her status. Long before I ever imagined myself in this position, I recall reading horror stories of negligence on the part of caregivers in relatively normal circumstances. I am afraid that we will end up with somebody who says they are okay, but at the same time fail to carry through on their promise. Though we probably live in the most liberal part of this state, we're still in Texas and this makes me worry a lot. I have lived here all of my life and I know that it's in many ways a culture that can manage to be polite for appearances, but not much else. I just hope to God that we can look back on this situation and be in a better place in a few years.

I want to hear the attitudes and opinions of those in the nursing profession about this situation. Have you ever been witness to any form of discrimination affecting patient care and/or would you feel uncomfortable caring for certain kinds of patients yourself?

I apologize for the length of the post, the truly pertinent information is that we are concerned that her anatomy will affect the care she receives.

Thank you

[caliotter3]

Of course you would discuss this at length during the intake session. I would take it as a given that you should emphasize (even though it should not require emphasis), that the agency do a good job in screening personnel. In the end, the patient and her family have full discretion in choosing workers. And the reverse. At any time that it does not work out, adjustments are made. This is the normal course of events for any home health case. And for what it is worth, I did care for someone in similar, but not exact, circumstances. No problem whatsoever for me or the patient. The "family" member though was a different story. This person made it clear that they resented the nursing personnel, period. Everyone has to be on the same sheet of music, and everyone has the ability to decide to make changes if they feel it will not work, without repercussions or ill will.

[Evalynn]

While I am not a nurse (I am a hoping to become one though!), I work in the medical field, specifically in geriatrics. I have heard doctors and nurses complain of negligent caregivers/home health aides, so it's definitely something to worry about! It sounds like your daughter is mentally intact, so she should be able to provide you with feedback about her care. I would continually ask her for her opinion on her care, as well as her take on whether she is being treated fairly, probably on a daily basis for a while. I'm sure that most caregivers out there are great, but when it comes to your child, you want to be sure you're leaving them in the best hands!

God Bless, hope she makes a full recovery and you find a great person to help out!

[wooh, BSN, RN]

I think the primary thing you have going for you is that she can tell you if there are problems. I think where you'll find the biggest problems are where you have to trust someone with a loved one that can't tell you if there are problems (due to dementia or some other inability to communicate.)

I can say, it wouldn't be an issue for me. But working in a conservative area, I can say some of my coworkers would. I'd definitely discuss the issue with the company you go with. I would definitely make sure they understand the sensitive issues involved. That she is a SHE, and should be referred to as such, but that when it comes time for care down there, not to be shocked by parts that would belong to a HE.

Good luck!

[ItsTheDude]

sorry i didn't read the op's entire post, but i assume the op is worried about bias in hh when taking care of a transsexual, if so, read on.

home health is one of the easiest areas of health care to get the exact kinda caregiver you want (white, black, male, female, liberal, conservative, etc). you just tell them what you want and they will provide as best they can. the reason is simple, you can just go to any number of other hh agencies and get what you want, it's competition. if you don't like who they send out, tell them, if they don't fix the problem, tell them you're going with another hh agency.

[Holly041987]

I am an LVN and do home health. The good thing about home health, as mentioned above, is that you can keep trying nurses until you find the ones you deem competent, caring, empathetic, or whatever it is you and your daughter are seeking. Also, because the attention is focused on only one patient in the home there simply isn't room for the patient to be ignored or neglected. Not to say that doesn't happen but it's rare and they are reported to the agency. Our nurses and caregivers have daily documentation that's required and an RN does visits and is available 24/7 to report anything. I think you will find it to be a relief especially because of the relationship you can develop with your nurses. I know my agencey tries very hard to send who they think would be a good fit for the client. God bless you for being a loving caring mother. Caring for a dependant adult is not easy.

[aura_of_laura]

I actually just had a young male-to-female preop transgender patient a few months ago. I served as kind of a watchdog for staff conduct and reactions about this patient, and was surprised at how seamlessly she was accepted as a female by employees and other patients.

I would be prepared to give some information to the home health service, maybe point them to some LGBT resources. Your daughter's gender identity should have minimal impact on the care received... the staff will need to get over the shock-and-awe factor on their own time, and treat her with respect.

Best of luck to you both!

[jmtndl]

My brother is gay and several years ago his lover...a beloved member of all of my family..died of AIDS. He was very ill towards the end and my brother found a Home Health agency thru the Gay community in the city where we lived. I am a very particular nurse, and am very watchful of the care being given anyone,espcially a family member.The agency recommended by the Gay Alliance provided very loving supportive nurses. Most of them were gay or had family members who were, and did not seem to be inclined towards negative perceptions. Because the Gay community is in tuned to prejudices experienced by the sexually "different" in our society, that might be a place you can start. There are also Transsexual groups in communities that may be able to make some suggestions. I am so sorry your daughter is experiencing these difficulties,and I am sure you can find a compassionate group of nurses will to provide sensitive, comforting care. Hope this suggestion helps.

[CountryGirlRN]

To DLKeys:

I'm so sorry for your daughter's condition - what a nightmare. It sounds like all the above posters gave you some really good advice. I know this is off the subject of prejudice, but I felt compelled to write. I'm writing because I have worked on a Spinal Cord Injury unit for the past 4 years and have had several pt's with transverse myelitis. I strongly urge you and your daughter to contact a specialist in SCI. Most every pt we have is on a bowel care regimen involving a laxative suppository, digital stimulation and manual disimpaction along with stool softeners - this is done every day when the person is newly injury and then every other day once they get regulated. Most of the time, they don't have accidents in between and many of our pts never have accidents. Those of our pt's who don't have indwelling catheters, do self catheterizations every 4-6 hours and remain continent. Please contact a SCI doctor! There's so much you and your family need to know. Good luck to you all and I wish your daughter a speedy recovery.

[smartnurse1982]

sorry i didn't read the op's entire post, but i assume the op is worried about bias in hh when taking care of a transsexual, if so, read on.

home health is one of the easiest areas of health care to get the exact kinda caregiver you want (white, black, male, female, liberal, conservative, etc). you just tell them what you want and they will provide as best they can. the reason is simple, you can just go to any number of other hh agencies and get what you want, it's competition. if you don't like who they send out, tell them, if they don't fix the problem, tell them you're going with another hh agency.

I know a lot of latinos don't want male nurses taken care of their daughters. But the color thing I had no idea about until I heard a nursing supervisor and another nurse talk about a native american family that didn't want white nurses caring for their son. I thoght those things were illegal? I'm soory,but if you are using a goverment program to pay for hh services you should not have any say about the color or ethnicity of a nurse as long as they are incompetent.

[smartnurse1982]

Oh and may I add,it probably wouldn't matter if the nurse is conservative,gay,as long as they keep their views to themselves(which all nurses should do,since its company policy not to talk about orientation,political affiliation,etc) and do the job right.

[wooh, BSN, RN]

I think in a perfect world, it shouldn't matter if a nurse is gay/straight, male/female, whatever color/nationality/religion. And it makes me mad sometimes trying to cater to things like that. But if it's going to be a long term assignment, which a lot of home health ones are, then it can be better for the nurse if they fit into the ideal mold that the patient wants.

We've got a frequent flyer that when his name comes up, one nurse ALWAYS has to bring up that she thinks he's gay. This goes along with her regular random musings on how she loves the person but hates the sin of being gay. Drives me batty. Now she might love the person, she might do all the skills right. But if I was charge and assigning a gay patient, I'd probably not assign them to her just because no matter how much you try to cover up your prejudices, they tend to always show themselves in the end.