Do you want to tell us about what it feels to have dialysis treatment?

[Ferran]

Hello

This is Ferran, a design researcher at fuelfor. We are doing a project in which we try to understand and improve how people experience dialysis care. We will be visiting some dialysis clinics to see how care is delivered and speak to staff and patients in person. As preparation, we would also like to hear your personal experiences and views to give us another important perspective.

1- What do you look for when you choose a dialysis centre?
2- What is the difference between a good and a bad dialysis treatment experience?
3- How do you like to spend the time while having a dialysis session? Why?
4- How would you describe the relationship with your care-team at the centre ? and other patients?
5- What do you think could improve the experience for you?

Thank you for taking the time to share your thoughts with us.

www.fuelfor.net

[sullidog]

1- What do you look for when you choose a dialysis centre? Experienced staff, and a staff that's going to care about me the pacient and is going to suggest the right treatment for me.
2- What is the difference between a good and a bad dialysis treatment experience? A good experience is not crashing (bp dropping low) which can cause vomiting, dizzyness, headaches, etc. A good experience is not crashing, feeling good the whole treatment, etc.
3- How do you like to spend the time while having a dialysis session? Why? Either watching tv or listening to music. I listen to music most of the time because it helps the time go by a little faster.
4- How would you describe the relationship with your care-team at the centre ? and other patients? I have a good relationship with my fellow pacients and staff. There's only a few out there that I like as a person, but sometimes they have no idea what they are doing, such as canulating.
5- What do you think could improve the experience for you?
 Personally I think the center I go to needs to hire people with more experience.
Troy

[dizzypt]

1- What do you look for when you choose a dialysis centre? Experienced staff, and a staff that's going to care about me the pacient and is going to suggest the right treatment for me.
2- What is the difference between a good and a bad dialysis treatment experience? A good experience is not crashing (bp dropping low) which can cause vomiting, dizzyness, headaches, etc. A good experience is not crashing, feeling good the whole treatment, etc.
3- How do you like to spend the time while having a dialysis session? Why? Either watching tv or listening to music. I listen to music most of the time because it helps the time go by a little faster.
4- How would you describe the relationship with your care-team at the centre ? and other patients? I have a good relationship with my fellow pacients and staff. There's only a few out there that I like as a person, but sometimes they have no idea what they are doing, such as canulating.
5- What do you think could improve the experience for you?
 Personally I think the center I go to needs to hire people with more experience.
Troy

Hi there

1.  I look or a clean, friendly enviroment, experienced staff and good facilities (tv, radio etc)


2. A bad experience is waiting around for long periods to be needled, inexperienced staff, no facilities; a good experience is friendly staff, short waiting times and warm comfortable chairs

3.In my usual unit I am able to use their laptops, watch tv, listen to music or chat to other patients.  This helps to passs the hours of utter tedium.

4. I have a very good relationship with my care team.  They are helpful, explain everything to me and we can have a laugh.  Meeting other patients every time I go to the unit is good because I can chat to them.  Most of them ae fine, you always get the odd one though!

5.  I know this sounds silly but my unit is really very good.  The only thing I can think of is the headphones are not too comfortable for the tv unit.

I hope this helps

Chrissie

[Ken Shelmerdine]

Ditto to all above however:The main fault  with all units worldwide is the system for assessing excess fluid. Assessment by weight calculation only without body mass calculation is fundamentally flawed leading to many adverse events while on D caused by the removal of too much fluid or removal of fluid too fast.

Be aware that your dry weight can vary from day to day and some of it could be body weight because maybe the day before you ate more fatty foods than normal or consumed more calories which may increase your weight just as it would any healthy person. The problem then is that most of the techs will say that your extra weight is all fluid and will insist on taking off that amount fluid which really isn't there to take off.

Get to know your own body and know when you are at a weight which is comfortable for you. In other words take control of this aspect of your D and don't let techs bully you into taking too much fluid off. 

[Rerun]

Welcome to IHD.  We get a lot of design students asking for our help.  We always jump right in to assist them.  All I ask is that you come back with your results.  Maybe a grade that your received and what you learned.

Thank you!       

Rerun, Moderator

[galvo]

What Ken said!

[MooseMom]

I'm not on dialysis yet, but I have been thinking long and hard about these very questions.  My mother is on dialysis; she has a big family, so she travels a lot and has experienced several clinics around the country.  In speaking to her, and in answering these questions for myself (although admittedly I don't have much experience yet), two things come to mind...

Neither my mom nor I chose which clinic to attend.  My neph and my PCP are in the same practice, and they are both directors of the clinic that happens to be closest to where I live, so for that reason, I will go there.  Same goes for my mom.  I would be surprised if most dialysis patients actively go around interviewing and then "choose" a clinic, but I may be wrong about this.  Anyone?

Above all, having an experienced staff is paramount.  These people are entrusted with your life every time you step into that clinic, and it is not easy to relinquish your wellbeing to people you perceive to be incompetent or uncaring.   I don't need chitchat nor handholding nor sympathy...I just want people to be competent.
I don't have answers to the other questions yet, but I just wanted to offer what I already think.  Thank you for the opportunity.