Table 2 Themes, subthemes and illustrative quotes in the study conducted to design therapeutic education workshops for home haemodialysis (HHD) in a patient-centered CKD research

1. HHD allows autonomy and freedom with constraints

Active in my care

Interview 1 Mrs. M [817:865]

I no longer wanted to do dialysis at the center

Interview 2 Mr. B [2225:2337]

I am in charge of my own care. I drive myself to go for dialysis.

Autonomy

Interview 1 Mrs. M [3200:3426]

When I am on vacation, I adapt my sessions according to my schedule, I do dialysis early in the morning. Otherwise, when I work, I do dialysis at night. It also depends on my spare time activities such as hiking and biking.

Doing dialysis whenever I want

Interview 4 Mr. S [1510:1601]

I can change my dialysis timetable according to my own schedule, and even my sessions.

Interview 5 Mr. Z [3562:3668]

I can connect to it any time I want by continuing to do my dialysis three times a week for 4 h each.

Less hospital visits and saving time

Interview 3 Mr. F [601:801]

You don’t think much about the time you waste because of the center’s schedule, waiting for the taxis and traffic congestion. You don’t feel all this right away, but it is very important after all!

Interview 5 Mr. Z [3197:3325]

Staying at home saves me the 70 km round trip between my workplace, the dialysis center and my home.

Interview 5 Mr. Z [4176:4335]

The good thing about home dialysis is that I don’t need to wait for a taxi nor any help to do dialysis. Thus, I can choose the dialysis time, which brings a little sense of freedom for me.

Freedom

Interview 4 Mr. S [1601:1614]

I am free to do dialysis whenever I want.

Interview 1 Mrs. M [939:1304]

I went on vacation for 2 weeks with my husband and my daughter. I was able to do dialysis early in the morning and then I had the whole day for us. If I had done dialysis in the center it would have been mandatory in terms of dialysis duration as well as the trip to the center. The nearest dialysis center is located 30 min away from my vacation residence.

Life and work project

Interview 1 Mrs M [2048:2379]

The HHD adapts to my lifestyle and not the other way around.

2. Safety of the care environment

Organization, space and care management

Interview 5 Mr. Z [3740:3846]

Space is needed for the reverse osmosis, the hemodialysis machine as well as the stocked material. We need a whole room dedicated to this.

Interview 1 Mrs. M [4756:5515]

You also need to be well organized regarding the storage. In my dialysis room I have a closet reserved for my dialysis equipment. I always have some compresses at hand, in case of bleeding. I can ask my husband or my daughter, but I prefer to be organized.

Interview 4 Mr. S [2505:2864]

When I get up, I get the hemodialysis machine ready, then I take my breakfast and connect myself. After disconnection, I can eat with my daughter and my wife, no need to wait.

Security, patient’s care experience

Interview 3 Mr. F [1502:1700]

When you don’t feel good or have some health issues there is always a way to go back to the dialysis center. There, at least you are surrounded with the staff as well as the other patients. But when you start feeling better go back to home dialysis at once!

Interview 3 Mr. F [3175:3307]

The patient education and training for home dialysis workshops you organized now facilitates my learning.

3. The caregiver and family environment

Stressed, worried and exhausted caregiver

Interview 2 Mr. B [1797:1899]

Doing dialysis at home weighs on my wife, who is exhausted and stressed. She is also very much worried if my blood pressure is too low.

Interview 2 Mr. B [3607:3787]

I imposed the dialysis on my partner. Doing dialysis at the center has much less impact on her. She is the one who puts up with the illness. Home dialysis means bringing the illness home.

Caring, reassuring caregiver

Interview 1 Mrs. M [1827:2000]

My husband agreed to the home dialysis, he is a great help, including with the cycler (disconnects, cleans the cycler, puts the material away and deals with the stock).

Interview 5 Mr. Z [3345:3559]

My partner helps me by setting up my haemodialysis machine when I compress the needle site; she disassembles the haemodialysis machine and cleans it. My partner helps me a lot with my dialysis, a real help. She discontinues my dialysis for me from time to time.

4. Patient’s experience and experiential knowledge

Actor of my care

Interview 1 Mrs. M [1476:1825]

Doing dialysis during my vacations had no impact or constraint on my family or my activities. This weekend, my husband and I are going to go on a camping car trip to my daughter’s summer camp in the mountain. We put all the material in a closet in our camping car.

Know my own body

Interview 3 Mr. F [1196:1449]

The fistula cannulation feels different with the nurse even if she is well trained and is more used to it. I can feel the needle from inside. Even if I miss the cannulation, I feel I am not in, I feel both sides.

Interview 5 Mr. Z [2886:3029]

I think it is very important to have a good knowledge of one’s anatomy and arteriovenous fistula. You feel immediately if you are inside the arteriovenous fistula or beside.

Dialyzing whenever I want

Interview 5 Mr. Z [3562:3668]

I can connect any time I want by continuing to dialysis 3 times a week for 4 h each.

Learning difficulties

Interview 2 Mr. B [513:583]

It was hard for me to cannulate by myself.

5. Self-care experience and impact on life

Autonomy

Interview 1 Mrs. M [867:938]

With the cycler I can move, I am not bothered any longer by the lines.

Constraints

Interview 2 Mr. B [4340:4431]

Knowing that the accompanying person will be involved in the management. Sometimes it can be oppressive.

Interview 3 Mr. F [1111:1160]

I didn’t want to bring the hospital at home.

Learnng difficulties

Interview 1 Mrs. M [2510:2637]

I had difficulties during the first self-cannulation, but I knew it was mandatory for home dialysis.

Interview 5 Mr. Z [2611:2885]

The first cannulation was painful for me. The nurse was telling me to push the needle further but since I have very dry skin, it was hard. I was a little apprehensive about my first cannulation but it was necessary to start it. It was painful and up to now it still hurts at the fistulae.

Freedom

Interview 2 Mr. B [947:1118]

More freedom, more flexibility. I can adapt my schedule and even my sessions according to my own schedule/timetable. When I do dialysis in Vienne, I have time constraints.

Life and work project

Interview 1 Mrs. M [4297:4432]

You must think about your lifestyle before dialysis, if you like to be autonomous, you must go ahead and be motivated to do HHD.

6. Factors that impact the choice treatment with HHD

Influent factors less choice with HHD

Interview 2 Mr. B [2679:2996]

Home dialysis is challenging for me. I get up at 5 am every day to run my business, and I do dialysis around 8.30 pm, when my wife gets back from work. She works in Lyon and it takes her an hour to arrive. I go to bed at midnight or 1 am since I am exhausted as much as my wife is.

Interview 4 Mr. S [933:1090]

My wife used to tell me that I was crazy to do dialysis at home, and that it’s too difficult.

Influent factors more choice with HHD

Interview 3 Mr. F [1701:1943]

I do dialysis daily, 6 times a week: 3 times for 3 h and 3 other times for 2 or 2 h and a half. I feel much less tired when I do dialysis 3 times a week for 4 h. I recover faster and I can eat better. I can also allow myself an aperitif that I usually wouldn’t take.

Interview 4 Mr. S [767:932]

One day, I went online to get information about home dialysis to better understand how it works. I talked to my doctor who seemed to agree with home dialysis. I gathered a lot of information.