Table 3 Categories, subcategories, primary concepts and quotations of the study

Adaptation facilitators

Social support

* Hospital personnel assistance

“Nurses here are so sweet. They explain everything to me. You have to wash your and your sons’ hands more often. Whenever you come to the hall, you have to wear a mask. Your son should not go out at all in the fall and winter” [p15].

“… The nurses here give us a lot of consolation. Whenever I cried, they came in and talked to me about the other patients’ situations and gave me encouragement” [p9].

* Family Support

“If I need help, I always ask my mom to come and help me. For example, she comes and helps me with household chores” [p15].

“… My husband is always supportive. He helps me by taking care of the kids. He takes them to the doctor, brings them back …” [p10].

* School personnel assistance

“When my son is in the hospital, his teacher comes by to teach him” [p5].

“… Because of his disease, he is absent everyday … even his principle comes home to teach him” [p7].

* Support of colleagues

“Fortunately, my boss is very cooperative. Once, when my son was hospitalized in Tehran, he agreed to give me off, and I was out of work for 40 days” [p7].

“… At work also, the burden is on my colleague. Sometimes, I am out for one or two days. My colleagues help me out and cover for me …” [p8].

Family capability

* Parents financial ability

“I always thank God, we don’t have a financial problem. I can not imagine what we should do if we don’t have money to take care of our sick child!!! May God help those who do not effort medications and treatment costs” [p1].

“If you have a sick kid and also you are broke, it would be a disaster and unbearable. But, luckily, I didn’t have any financial problem in the past 11 years …” [p7].

* Child’s educational success

“Although he is sometimes hospitalized and cannot go to school, his grades are good, and teachers are happy with him” [p4].

“He is a good student. I take him to school once a month. He takes his exams. Teachers say his grades are excellent” [p11].

* Good relationships between parents

“My husband is like a pillar for our family. He always pays attention to me, he doesn’t let me down” [p10].

“… Despite all these difficulties, we (my husband and me) love each other. So, we’ve gone through all these problems …” [p4].

* Parents similar past experiences

“My first kid has the same problem. I got used to the situation. I don’t take him to the doctor’s office for little things. I know what I have to do when my kids get sick” [p2].

My father was also on dialysis. I already had the experience of caring for a patient with kidney problems. It’s hard, but you get used to it” [p9].

Spiritual beliefs

* Appealing to God

“My wife and I always pray to God in a hard time. Whenever we do that, we get energy” [p12].

“He (My husband) always told me to keep your faith up and let God take over our problems during hard times … Sometimes, he had huge problems in his life, but he believed that he’s backed by God. So his problems will go away and this has always been happening” [p1].

* Divine wisdom

“This disease is from God, not human beings. Treatment is also on his hands and doctors are as tools in his hand. What can we do?” [p11].

“I say this is a divine test. I always say: God tests his servants with difficulties …” [p10].

Adaptation barriers

Family-related barriers

* Lack of parents’ information about illness

“We don’t know what all these medications are for. Where should we buy them? How should we give?” [p13].

“I don’t know anything about peritoneal dialysis … Creatinine increased up to 6. The doctor said he was on a razor edge, he should go for peritoneal dialysis. The only thing I knew about dialysis was this catheter that they enter from here (pointing to the neck); I said if my son had that (catheter), I couldn’t live anymore” [p7].

* Parents’ concern about uncertain future

“When will this kid be well? How long should he take these medications? Is he going to get better? ...” [p10].

“I really worry about his future all the time. I always ask (myself) whether he will get well when he grows up. Parents don’t stay with them (children) forever …” [p11].

* Families’ financial concerns

“My son is hospitalized more often, and we have to leave home and bring him here. When he is in the hospital, my husband stays in the hospital yard all night because we can’t effort to pay for the hotel” [p1].

“Sometimes, I have to borrow from my family to get her medications. Things are getting really tough” [16].

* Restrictions in family recreation

“I don’t let my other child go to the park or play somewhere. Because whenever he goes out to play with his friends. He asks me why I don’t go out to play. That’s why they both stay at home” [p11].

“Everybody likes to go and enjoy parties or trips, but … these children take corticosteroids, their body is sensitive … so we can’t go out much …” [p10].

* Restrictions on family relationships

“My son is 8 years old and he is still on a diaper. So, I try to limit the family visits” [p7].

“I don’t go anywhere because of my kid. I live in my mother-in-laws house. They usually go out and attend ceremonies … But, I stay home to take care of my kid” [p11].

* Children’s problems

“Ever since my daughter has been using prednisolone. She gets nervous when the house gets crowded, or there is a lot of noise around her” [p6].

“His teacher told me that your son is a little depressed. I asked him what is wrong. He said, leave me alone. Everyone eats puffy cheese and chips, but I can’t … “[p15].

“My son doesn’t go to school. He went to school once; he had eaten ice cream with his friends. Then, he was hospitalized for 1 year … so we hired a teacher to teach him at home …” [p11].

Mental stress by others

* Pity from acquaintances

“Every time my co-worker talks about my daughter with pity, I get agitated” [p6].

“Some people say: “oh, this (child) is sick; don’t tell him anything!” … It really pisses me off, and I tell them, “what’s wrong with him? Every kid gets sick...” [p10].

* Blaming parents by acquaintances

“My friends blame me that my daughter would not get sick if I did not marry this man” [p6].

“My mother-in-law always says it is our fault (my husband and me) that he’s sick. Crying is the only thing I do and ask what I should do?” [p9].

* Peer negative reactions

“One day, my son came home crying. I said, “Darling, why are you crying?” He told me that his friends did not let him play. They said he can’t play because he has cancer” [p5].

“… Taking corticosteroids made her (my daughter) obese... Sometimes, her friends make fun of her, it really bothers me …” [p8]

The chronic nature of the disease

* Frequent disease recurrence

“This is the third time my son is taking this medication ... he had stopped two months ago. He has to start again because of its recurrence” [p12].

“… She takes corticosteroids every day. Her disease gets better for a while. Later, when we try to decrease and stop her medications gradually, again, her disease gets worse …” [p8].

* Frequent hospitalizations

“My son has been hospitalized about 20 times so far. We both are sick and tired of being in the hospital” [p10].

“It’s been passed seven years since my daughter’s illness. During this time, I had to hospitalize her again and again” [p3].

* Need for constant care

“When my son discharged home. The nurse taught my wife how to do Peritoneal Dialysis. We have to dialyze him regularly. We should pay attention to the fluid coming back from dialysis. I feel so stressed out sometimes” [p7].

“His school is far from home. I have a hard time. When he is at school, I have to go to school every 3 h and insert his catheter …” [p4].

* Invasive treatment and diagnostic procedures

“I always thought my daughter would be treated with medications ... but when I found out, they had to take her to the operating room and put a catheter in her abdomen (peritoneal dialysis catheter) … I had a hard time breathing [p8].

“The doctor told me, “Your kid needs to have a biopsy.” I said, “What does that mean?“He said that they should take a sample from his kidney. When I heard that my world came apart” [p15]

Unfavorable treatment conditions

* Lack of medical facilities

“Doctor told me your son needs a color biopsy, and we don’t have it here. You must go to Tehran. I was so depressed” [p5].

“The boy (transplantation donor) had come from Tehran for pre-surgical anesthesia assessment. So that, he supposed to get a consultation on Tuesday, hospitalize on Thursday, and go under the surgery on Saturday. He (laboratory director) said, unfortunately, the solution (necessary for tissue typing test) was not available. I asked what that is. He said the (required) material for this test came from Germany. It is not available now. [p7].

* High treatment costs

“If it was just the medications costs, we wouldn’t have any problem. I took my son to a nutritionist and cost me too much money” [p13].

“During these years, sometimes my son had been hospitalized for a month. Well, it cost us too much money, and we had a hard time to survive” [p10].