West Texas A & M University Sickle cell Disease discussion APA Format Most cite 2 medical/nursing journals peer reviewed that are dated greater than 2014

West Texas A & M University Sickle cell Disease discussion APA Format

Most cite 2 medical/nursing journals peer reviewed that are dated greater than 2014

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Discussion Forum Questions. Remember to have a professional nursing reference for all discussion forum assignments.

1. Tony talks about how the lady came round and talked to him and his sister. In your opinion, was this done appropriately? Are there any issues around ethical practice that arise from this action? How could the information have been given to Tony and his sister differently?

2. If you have contact with patients with sickle cell disease, what has been your experience of pain management? Reflect on ways in which it may be possible to improve pain management in your own practice?

3. How could this story change your current practice?

4. Do you think that this could happen in a hospital in the United States today or do you think that the nursing staff is educated on the this genetic disorder (Sickle Cell Disease) and therefore, educates their patents and families? Discussi
Welcome to the interview today. I just wondered if you could start off by telling me a little about the condition
Well my condition is either called sickle cell anaemia or sickle cell disease. I have suffered from that since the
What are the main symptoms of the disease that you experience on a day-to-day basis?
Throughout the years, I have had so many different symptoms. I have been paralyzed, partially blind, loads of ot
And how has this changed and affected your life?
I didn’t have much of a school life. I spent most of my time in hospital. They put it down to every time I used to
of time up until I was about 14. Probably about 12 or 13. I suffered really, really badly and then it seemed to stop
child. Then I had a really severe attack when I was 18. I spent quite a lot of time in hospital then. I had spleen da
caused all the rest of it so I was in hospital quite a while. I lost about 4 stone in weight. That was one of the wors
Did you get much geneticinformation from the NHS staff like the nurses?
No I never got any information about that at all. Basically when I was in hospital, I was like a guinea pig. They u
quite a lot of medication then but I was not on medication at home. All I used to take at home was folic acid so t
medication but it was quite a lot you know for somebody of my age.
When you’ve been in hospital what kind of experience have you had from the different nurses and the differe
What stage when I was younger are you talking about?
Well throughout really.
Well when I was younger and I was a kid I was on a children’s ward, so it wasn’t too bad because obviously ther
like for different things. Just used to take pills after pills after pills and stuff like that and never really told me wh
lady came around and explained to me what would happen in the future and all that kind of stuff. That shocked m
got a younger sister and I could always remember saying that day she cried. She really really cried. It always stu
said our life expectancy at that time well, was quite low. I was basically gutted. Absolutely gutted. And I can jus
seemed to have snapped basically. Couldn’t believe it. Couldn’t believe it.
This lady, was she a genetics expert?
Yes she knew more about it, she started a programme. I can’t remember her name to be honest with you. She cam
do you do and stuff like that. She was basically an expert on it like she thought she knew at the time and she star
that. And what could happen and basically if you did certain things or if certain things happened to us like say w
like you know it was all stuff like that. Very very frightening. Even as a 21 year old like that really did scare me.
Looking back on that experience was that a useful experience or was it one that you wish you hadn’t had?
I have reservations about both really. I mean sometimes nobody wants to hear bad news. But at the end of the da
what I think the difficulty was. If I was told before maybe I could adjust and after when the lady told me, I went
myself, like I said I was an alcoholic for quite a long time. I just used to drink myself basically into a stupor and
with it. Lost my job through it. All sorts. It was a really really bad time. Really bad time.
After that happened did you get any support from this specialist or anybody else to come to terms with it?
No. No. I had to basically deal with that by myself. Me and my sister had to face the family. There was a lady ca
society basically and she gave me more information a bit more positive than the other woman. I say positive. It w
got any easier because I remember on two occasions I almost died. My liver started to fail. That was one of the w
was really really cold and the doctor came around and I mean I had 2 and 3 quilts on top of me and I had a tempe
and I thought basically that was it for me. I accepted it in a way. It was like when they were saying to us our life
anyway so I thought I’d live life to the full really. To have suffered a liver, that was quite bad.
What’s your experience been of the NHS care you’ve received in terms of good experiences and bad experien
When I moved over to the adult wards I found the staff had no knowledge of it at all really hardly any of them. B
sympathetic. I had quite a good rapport with some of them but like I said it didn’t help that I kept going to differ
drugs I had to take just to get better and they couldn’t believe it cos like I said I mean you know they couldn’t be
350 mgs Pethedine every hour which is astonishing basically and it wasn’t too bad.
I didn’t like going in to hospital but it wasn’t too bad. We had this dedicated ward where we could go and by-pa
wouldn’t see a consultant because at the end of the day they couldn’t cure me so I thought what’s the point of m
hospital. Like I said after that last experience I would not go into hospital and I thought I would rather die at hom
knowledgeable and stuff like that and you know it was great. It was the first time I felt safe and comfortable basi
Because the last experience I had was last October where they never had no beds. They closed down a lot of the
I said I was in hospital and I just wanted to cry really. Because the ward they put me on the staff didn’t know any
the drug and I thought he thinks I must be stupid. If he thinks I could take paracetamols at home and like I said I
two trained staff to issue the drug which was diamorphine, so if one of them went on to dinner, basically this wa
not getting any better I had to wait and wait. That’s one of the worst experiences I have ever had and to me the m
If there was one or two messages you wanted to give us to improve the care of somebody like yourself with sic
have helped you when you were younger and what would help you and your family now?
I would say more support when I’m at home and to be able to get onto the actual ward that was chosen for us an
hospital you get nothing.
What would that support be like for you? In what form?
Basically more care, somebody to ask how I am and to talk to. If I’ve got any problems, somebody that I can liai
You can’t live with the magnitude of where you wake up every single day of your life in pain. And you try to ex
somebody like a normal person that you’re not fit and healthy is mind boggling basically. It’s hard to get through
hard to understand I think and that is why I want somebody who understands and somebody who can actually su
don’t want her to look after me. It’s not her job. I would want somebody who basically wants to look after me an
knows, who has a certain knowledge about it and can respect what I say and believe what I say because that’s an
A lot of staff when you go into these different wards, they don’t believe you. They just don’t believe you. They s
into hospital. They think you want to be there Nobody wants to go into hospital. So I’m not going to make up sto
mean. It doesn’t make sense to what they say. Do you know what I mean? And that’s what’s hard for me. I woul
going on rather than me getting agitated and angry and explain it to that person. So I think more educational kno
everybody understands what cancer is. It’s along those lines. I mean the pain like I said is horrific.
Just to go back to that point about needing somebody to talk to, did you ever get any support like that?
No.
Do you think if you had somebody who was able to do that, that would help you?
That would have helped me when I was younger. It would really have helped when I was younger because when
anyway so if somebody had told me be positive, you can live a full and happy life, that would have been a lot be
That’s the main thing that gets me. They still do not understand in this day and age. And they don’t believe you.
Is there anything else you would like to share about the project that we are doing that you think we need to th
Well I think the main thing is as long as you are listening with an open mind and you just take time to think abou
as you get some sort of educational understanding about it that would please me.
Discussion Forum Questions. Remember to have a professional nursing reference for all
discussion forum assignments.
1. Tony talks about how the lady came round and talked to him and his sister. In your
opinion, was this done appropriately? Are there any issues around ethical practice that
arise from this action? How could the information have been given to Tony and his sister
differently?
2. If you have contact with patients with sickle cell disease, what has been your experience
of pain management? Reflect on ways in which it may be possible to improve pain
management in your own practice?
3. How could this story change your current practice?
4. Do you think that this could happen in a hospital in the United States today or do you
think that the nursing staff is educated on the this genetic disorder (Sickle Cell Disease)
and therefore, educates their patents and families?
on post 7

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