Demographic characteristics of the participants
Of all 17 parents who participated in the study, 11 were mothers, and 6 were fathers. Seven parents had one child, nine had two children, and one had three children. The duration of childhood illness was between 7-144 months (60.47±44.03). Four parents had primary education, three parents had a middle school education, seven parents had a high school diploma, and three had a bachelor's degree. Of the children's diseases, nine cases were nephrotic syndrome; two were chronic renal failure, one was secondary to Familial Mediterranean fever (FMF), one case was secondary to Cystinosis, one was severe fetal hydronephrosis secondary to kidney stones, and one was neurogenic bladder (Table1).
Categories
"Adaptation facilitators" and "adaptation barriers" emerged as two overarching categories from the data. Adaptation facilitator, followed by three sub-categories of "social support," "family capability," and "spiritual beliefs." Adaptation barriers were supported by the following four sub-categories: "family-related barriers," "mental stress by others," "the chronic nature of the disease" and "unfavorable treatment conditions." (Table 2). (See diagram).
Adaptation facilitators
Social Support
The participants emphasized this item as one of the significant factors that help them adapt to hard situations. The following primary concepts emerged from this sub-category: "hospital personnel assistance," "family support," "school personnel assistance," and "support of colleagues."
Hospital personnel assistance
Some parents talked about how the guidance and education they received from the nurses, doctors and resources increased their knowledge. This education, in turn, enabled them to provide high-quality care for their child with a more peaceful mind. Some of the participants stated:
“… 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].
”At the time of discharge, the doctor explained everything so nicely. He gave me the instruction, how to give his (my son) medications, how long I should give his medications, and when he should stop taking them…” [p1].
Family Support
Parents voiced that caring for their children with the chronic disease made them feel exhausted. In such circumstances, their family’s support made it easier for them to go through. This support was either emotional or financial. Some of the participants’ experience was as follows:
“… His treatment costs 180 million Rials the last time he was in the hospital. Can you believe that? I didn’t even have one Rial. My brothers paid it off.” [p7].
“… 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
Some of the parents discussed how teachers or principals helped their children during their acute illness. Teachers went to their homes to teach them so that they would not miss their lessons. One of the parents said:
“… Because of his disease, he is absent everyday… even his principle comes to our home to teach him” [p7].
Support of colleagues
Some parents mentioned their colleagues’ assistants and how supportive they were whenever facing difficult situations. One of the parents stated:
“… 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
Family capability is one of the adaptation facilitators that parents repeatedly talked about. The primary concepts related to this sub-category include: “parents’ financial ability,” “child’s educational success,” “good relationships between parents,” and “parents' similar past experiences.”
Parents’ financial ability
Participants mentioned that some factors, such as their financial ability, made it easier for them to tolerate their child’s disease. A father voiced:
“If you have a sick child and you are broke, it would be a disaster and unbearable. But, luckily, I didn’t have any financial problems in the past 11 years…” [p7].
Child’s educational success
Another comforting factor for parents was a child’s good education status. Participant 11 stated:
“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
According to the participants, another supportive factor for parents was their happy and peaceful relationship during this overwhelming and challenging situation. One parent stated:
“…Despite all these difficulties, we (my husband and I) love each other. So, we’ve gone through all these problems…” [p4].
Parents similar past experiences
Analyzing parents’ experiences indicate that the ups and downs of life have improved parents’ tolerance and made them more capable of managing their child’s disease.
"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
Spiritual beliefs were another facilitating factor that effectively helped parents get along with their child’s disease. Parents believed “appealing to God” and “divine wisdom” helped them to tolerate the hard situation.
Appealing to God
Participants discussed that faith and belief in God have brought them tranquility and increased their ability to handle their problems. A mother stated:
“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 God backed him. So his problems will go away, and this has always been happening” [p1].
Divine wisdom
Participants mentioned that life's difficulties have been for a divine reason and described their child's disease as God's test. Parents shared their experience as follows:
“I say this is a divine test. I always say: God tests his servants with difficulties…” [p10].
“This disease is from God, not human beings. Treatment is also on his hands, and doctors are tools in his hand. What can we do?” [p11].
Adaptation barriers
Family-related barriers
This sub-category contained the primary concepts of "lack of parents' information about the illness," "parents' concern about the uncertain future," "families' financial concerns," "restriction in family recreation," "restrictions on family relationships" and "children's problems.”
Lack of parents’ information about the illness
Based on statements by the participants, the lack of necessary information about their child’s disease, and how to care for their sick child made them confused. One participant voiced:
“I don’t know anything about peritoneal dialysis… Creatinine increased up to 6. The doctor said he was on a razor's 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 the uncertain future
According to the participants, the uncertain nature of the disease and the uncertainty of the child's prognosis made the parents feel concerned about their child's future. A mother voiced her concern as follows:
“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
Families’ financial problems were dominant in the parents’ interviews. Most parents complained about financial difficulties. Participant 4 voiced:
“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 afford to pay for the hotel.” [p1].
Restrictions in family recreation
The majority of the participants explained that they restricted their recreational activities and family trips due to their child’s limitations for attending social events due to weakness of their immune system. One parent shared her experience as:
“Everybody likes to go and enjoy parties or trips, but… these children take corticosteroids, and their body is sensitive… so we can’t go out much…” [p10]
Restrictions on family relationships
Participants expressed that they had to limit their social interactions due to their child’s special diet and disease complications.
“I don’t go anywhere because of my kid. I live in my mother-in-law’s house. They usually go out and attend ceremonies… But, I stay home to take care of my kid.” [p11].
Children's problem
Participants described that the disease, its complications, and the medications’ side-effects limit children in their normal functions and daily activities, thus disrupting their social growth.
“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 one year… so we hired a teacher to teach him at home…” [p11].
According to the parents, the feeling of being special and different from other children, hearing hallucinations, yearning, being bored, fear of loneliness, depression, and irritability are among the mental health problems. Moreover, repeated infections, rapid fatigue, and anemia are among the physical health problems that these children suffer from. Parents described:
“… My daughter suffers from too much hair all over her body. She’s gained weight, and so she feels socially awkward …” [p8]
“…They constantly inserted a catheter for my child. She couldn’t pee herself, so she repeatedly got urinary tract infections…” [p16]
Mental stress by others
The parents discussed pressure from acquaintances. They voiced that it is hard to withstand their pity and blame. The inappropriate behaviors of their child's peers made it even more difficult to handle the situation Pity from acquaintances
Most parents experienced people talking about their sick children. They believed that it is terrible since they feel weak, incapable, and humiliated. A young mother described her experience as:
“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].
Participant 4 shared her experience as follows:
“Some people see my son and say, “oh, poor child.” It makes me feel really sad…” [p4].
Blaming parents by acquaintances
Parents talked about how others assigning blame made them feel guilty about their child’s illness. This feeling, in turn, leads to psychological distress in parents. One of the mothers said:
“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
According to parents’ responses, their child had a body change resulting from a combination of medication side effects. So, their child peer made fun of them and hurt their feelings. A father stated:
“… Taking corticosteroids made her (my daughter) obese... Sometimes, her friends make fun of her, and it really bothers me…” [p8].
The chronic nature of the disease
The chronic nature of the disease was one of the inhibiting factors with the following primary concepts: “frequent disease recurrence,” “frequent hospitalization,” “need for constant care,” and “invasive treatment and diagnostic procedures.”
Frequent disease recurrence
Frequent recurrence of the disease and restarting medications at higher doses was another concern of the parents. One of the parents said:
“… 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].
Another parent described:
“It had been a little more than a year since she was in the hospital. I don’t know if she caught a cold or what! Her eyes got swollen again. We took her to the doctor’s office, and we are here now.” [p14].
Frequent hospitalization
The child's frequent hospitalizations was another point that parents talked out. One parent stated:
"It's been seven years since my daughter's illness. During this time, I had to hospitalize her again and again." [p3].
Need for constant care
Some participants complained about feeling exhausted caused by the necessity of constant care for their children. They believed their entire lives were affected by their child's illness. One of the participants shared her experience as follows:
“His school is far from home. I have a hard time. When he is at school, I have to go to school every 3 hours and insert his catheter…” [p4].
Invasive treatment and diagnostic procedures
Most parents believe that the procedures performed on children were harsh to bear. Parents talked in this regards as follows:
“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 son 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
The participants mostly complained about improper treatment conditions. This sub-category emerged from the following primary concepts: “lack of medical facilities” and “high treatment costs.”
Lack of medical facilities
Participants discussed how medication shortage, lack of medical facilities, and the imported laboratory test kits delayed a child’s treatment process and distressed them. One of the parents described:
“The boy (transplantation donor) had come from Tehran for pre-surgical anesthesia assessment. He was supposed to get a consultation on Tuesday, be hospitalized on Thursday, and undergo 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]
One of the fathers shared his experience as follows:
“… The doctor prescribed some medications for my son. I can’t find them anywhere, and I had to go to Turkey to get them. It is unbelievable.” [p13]
High treatment costs
Analyzing the data showed high cost of medications, doctor visits, and frequent hospitalizations impose a huge financial burden on the parents. Participant 10 stated:
“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]