Table 3.
Sample Caregiver Quotations Describing the Impact of Caring for Individuals With ADPKD Across Domains of Life
| Impacted Domain | Quote | Caregiver for | Background |
|---|---|---|---|
| Emotional | |||
| Stress/anxiety | I feel worried about him if I go out. | Spouse | Wife (age 59 y) providing support for her husband on dialysis. |
| I am worried, but I can do nothing to it. | Spouse | Wife (age 47 y) providing support for her husband. | |
| The real problem are the attacks of pain and the fears, the omnipresent fear. | Sibling | Woman (age 35 y) providing support for her sister. | |
| It is distressing. She also worries about that… We don’t have kids, but if we have them one day… And this is more dangerous for a woman, being pregnant and having… | Spouse | Man (age 46 y) providing support for his girlfriend. | |
| I start to think about, you know, should I be worrying about transplants and organ lists and what family member has my son’s blood type and who am I going to try to tap this time to ask for a kidney, you know, so it’s that kind of stuff that you worry about. Because, as a mother, that’s your job, right. | Child | Mother (age 41 y) providing support for her adolescent son. | |
| Well, it was, uh, it was very, very difficult waiting--awaiting the test results. We knew it was a 50/50 chance, right, and, uh, it was, uh, I consider myself a more or less lucky person. It is tough to swallow not winning that coin toss. Uh, um, and now, I mean, he's still—he’s still a baby, right. He still doesn't talk so it’s very difficult. I mean, on top of having a first child and not really knowing how to handle this thing, right, and like all this potential is worry, especially when it’s baby. He can't talk, right, but ev--every time something was wrong with him it’s always in the back of your mind, what if it--what if it is. | Child | Father (age 27 y) providing support for young son. | |
| You could’ve blown me over with a feather when they told me my kid had PKD. I was shocked. And you go into the state of shock, and you think it’s going to wear off over time but it doesn’t. The shock gets worse, because it compounds into life. And then life compacts into future, and it’s a big cloud. It’s a huge cloud of worry that’s always there, and it’s so frustrating. | Child | Mother (age 40 y) providing support for adolescent daughter. | |
| Guilt/worry | I feel so miserable, I wanted to kill myself because I was so unhappy and frustrated with my life and this could be passed on to my children. | Spouse | Wife (age 46 y) providing support for husband whose mother had just died of ADPKD complications. |
| It is scary, especially when you know that it came from us, I think it is a quite big burden. | Child | Mother (age 41 y) providing support for adolescent son. | |
| Sadness | I am unhappy every day, for my husband is unhappy most of the time, which is a great impact on me. | Spouse | Wife (age 62 y) providing support for husband on dialysis. |
| I already have two children. If I didn’t have any, yes, I would have one. We had the first one, and when we decided to have the second one, the first one was still healthy. That’s why I think that the heartbreak was bigger. I wanted to have five, but with these two I stopped. | Child | Mother (age 38 y) providing support for son and daughter. | |
| Anger, frustration, and irritation | I was pretty mad at that time, blaming him for not taking good care of himself when I was away. | Spouse | Wife (age 43 y) providing support for husband who is awaiting transplant. |
| Angry, because all your advices end up in an empty pocket and even if I want to cheer her up… for me, my advice are unheard and she is the one that is sick. | Spouse | Husband (age 33 y) providing support for wife on dialysis and waiting for transplant. He wanted to donate his kidney but was not a match. Their child also has ADPKD. | |
| Sometimes I’d regret that I didn’t know he has such a disease, otherwise I wouldn’t marry him. It can’t be diagnosed during premarital check-up, and it’s inherited. | Spouse | Wife (age 38 y) providing support for husband. | |
| Nobody asks about us who support the patient. | Parent | Woman (age 31 y) providing support for her mother on dialysis. | |
| Helplessness/hopelessness | The helplessness is horrible. | Spouse | Husband (age 49 y) providing support for wife. |
| It’s too big, so at this point they just kind of...we don’t know what to do. They don’t know what to do because there’s no history. They don’t--they haven't been diagnosing kids so young. | Child | Mother (age 41 y) providing support for adolescent son. | |
| It is waste of time making plans. | Child | Father (age 39 y) providing support for son. | |
| Physical | |||
| Fatigue, exhaustion, and/or lack of energy | You can come back with no energy at all, after a full day at the hospital, and it is no recovering from that. | Spouse | Husband (age 36 y) providing support for wife. |
| So we feel tired, we feel fatigue mentally. | Parent | Woman (age 30 y) providing support for mother. | |
| Weight loss and/or poor appetite | I lost weight, 6 kg in just three months. | Parent | Woman (age 25 y) providing support for mother on dialysis. |
| I lost 7 kg in two weeks, I could not eat and was so afraid of getting a call in the middle of the night. | Parent | Man (age 31 y) providing support for father. | |
| I don’t eat right. You know, I eat once a day, if even that. I don’t have an appetite. | Child | Mother (age 40 y) providing support for son. | |
| Social/leisure activities | |||
| Limited social life | My life has changed drastically. We could not eat out anymore; we could not go to parties, because he would want to eat everything. | Spouse | Wife (age 42 y) providing support for husband. |
| If we go out too much in the same week, she then feels more tired and can’t move because of the backache. So we can’t go out too much. | Spouse | Boyfriend (age 36 y) providing support for girlfriend. | |
| Personal relationships | I don’t have time for that, to meet with friends, sometimes people drop in, but to be quite honest people are afraid. | Spouse | Husband (age 36 y) providing support for wife. |
| As if it were contagious. There is a rejection. | Spouse | Husband (age 40 y) providing support for wife. | |
| Work/Employment | |||
| Difficulty keeping job/functioning at work | I was switched because I had the schedule of 10:30 AM to 7:30 PM and they change it from 8:00 AM to 4:00 PM, precisely to be able to go there and see him. I was like: work, hospital, home…work, hospital, home. It as a triangle and now I say, how could I manage everything?” | Spouse | Wife (age 40 y) providing support for husband on dialysis. |
| Change to work situation | I get to work from home and that’s how I’m able to take care of her as well. | Parent | Son (age 35 y) providing support for mother. |
| I requested a reduced schedule to be able to spend more time with her. | Spouse | Husband (age 33 y) providing support for wife. | |
| Quit job/stopped working | I had to quit my job for taking care of her. My big brother found a job for me, but I told him that I wouldn’t go to work for I had to take care of her. I think I miss so many chances. | Spouse | Husband (age 40 y) providing support for wife. |
| I quit my job last year. | Child | Mother (age 41 y) providing support for son. | |
| Financial | |||
| Financial | Well, once she’s hospitalized, I…things like fees for the hospital, surgery, for example, I do worry about the money. | Parent | Man (age 31 y) providing support for mother. |
| I have to use money out of my savings. | Parent | Man (age 50 y) providing support for mother. | |
Abbreviation: ADPKD, autosomal dominant polycystic kidney disease