Demographic characteristics of the participants
Of all 16 parents who participated in the study, 10 were mothers and 6 were fathers. Age of participants ranged from 28 to 50 years. Seven of the participants had 2 children and the other had one child. In regard to education level, 4 of them had a middle school degree, 2 had a high school diploma and the rest had bachelor’s degrees. The duration of the child's illness ranged from 7 months to 12 years.
Categories
“Adaptation facilitators” and “adaptation barriers” emerged as two overarching categories from the data. Adaptation facilitator, followed by three subcategories of “social support”, “positive aspects of life” and “spiritual beliefs”. Adaptation barriers were supported by following five sub-categories: “parent’s confusion”, “the disease related issues”, “pressures from peers and acquaintances”, “inappropriate treatment conditions” and “children and family limitation” (Table 1).
Adaptation facilitators
Social Support
One of the sub-categories emerged from parents’ experiences was social support. The participants emphasized this item as one of the major factors that help them to adapt with hard situations. The following primary concepts emerged from this sub-category: “support of hospital personnel”, “support of family”, “support of school personnel” and “support of colleagues”.
Support of hospital personnel
Some of the parents talked about guidance and educations they received from the nurses, doctors and resources, increased their knowledge. This, 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 patient's situation 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 the medications…” [P1].
Support of family
Parents voiced that caring for their children with chronic disease made them feel exhausted. In such circumstances, their family support made it easy for them to go through. This support was either emotionally or financially. Some of the participants experience was as follow:
“… Her treatment costs was 180 million Rials the last time she was in hospital. Can you believe that? I didn’t have even a 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].
Support of school personnel
Some of the parents discussed about how teachers or principal helped their children during their acute illness. Teachers went their home 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 home to teach him” [p7].
Support of colleagues
Some parents mentioned about 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]
Positive aspects of life
This is one of the sub-categories related to adaptation facilitators that parents repeatedly talked about. The primary concepts related to this sub-category include: “parents financial ability”, “child’s good education status”, “parents good relationships”, and “parents 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 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 Good Education Status
Another comforting factor for parents was 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 very good” [p11].
Parents’ good Relationship
According to the participants, another supportive factor for parents was their happy and peaceful relationship during this strenuous overwhelming situation. One parent stated:
“… In spite of all these difficulties, we (my husband and me) love each other. So, we’ve gone through all these problems…” [p4].
Parents 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.
“Maybe all bad days and sufferings I had to my father's house made me tough and strong. My father passed away when I was 5 years old. I grew up with my brothers and brother can never be like a father…” [p4].
Spiritual Beliefs
Spiritual beliefs were another, facilitating factor that helped parents to effectively 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.
“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
Participants mentioned that the difficulties of life have been for a divine reason and described their child’s disease as God’s test.
“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 as tools in his hand. What can we do?” [p11].
Adaptation barriers
Parents’ confusion
This sub-category contained the primary concepts of “lack of parents’ information about illness” and “parents’ concern about an uncertain future”.
Lack of parents’ information about illness
Based on statements by the participants, lack of necessary information about their child 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. 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
According to the participants, the uncertain nature of the disease and the uncertainty of the prognosis of the child's illness made the parents' concern 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].
The disease related issues
Disease related complications were one of the inhibiting factors with following primary concepts: “frequent disease recurrence” and “need for constant care”.
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:
“… He takes corticosteroids every day. His disease gets better for a while. Later, when we try to decrease and stop his medications gradually, again, his 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 she caught cold or what! Her eyes got swollen again. We took her to the doctor’s office and we are here now” [p14].
Children's physical and mental problems
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 problems. Moreover, repeated infections, rapid fatigue, and anemia are among the physical 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 special in the society…” [p8]
“…They constantly inserted catheter for my child. She couldn’t pee herself, so she repeatedly got urinary tract infection…” [p16]
Need for constant care
Some participants complained about feeling exhausted caused by 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].
Pressures from peers and acquaintances
The parents discussed about pressure came from acquaintances. They voiced it is hard to stand their sympathy and blame. Their child’s peer inappropriate behaviors made it even difficult to handle the situation.
Sympathy of acquaintances
Most parents experienced sympathy of others and they believed it was really terrible, since they felt 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]
Blame of acquaintances
Parents talked about how blaming of others made them feel guilty about their child illness. This, 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 resulted from a combination of medication side effects. So that, their child peer made fun of them and hurt their feelings. A mother stated:
“… Taking corticosteroids made him obese... Sometimes, his friends make fun of him, it really bothers me…” [p8]
Inappropriate treatment conditions
The participants, mostly complained about the unfortunate conditions of treatment. The following primary concepts emerged from the sub-category of “inappropriate treatment conditions”: “lack of medical facilities” and “high treatment costs”.
Lack of medical facilities
Participants discussed about how medications shortage, lack of medical facilities and the imported laboratory test kits delayed child’s treatment process and made them feel distressed. One of the parents described:
“The boy (transplantation donor) had come from Tehran for pre-surgical anesthesia assessment. So that, he supposed to get 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]
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 costs of medications, doctor visits and frequent hospitalizations impose 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, we had a really hard time to survive” [p10]
Children and family limitation
Limitation caused by illness negatively affected both children and their family. This sub-category emerged from parents’ interviews and it covered the following primary concepts:” limitation of the children”,” children's physical and mental problems”, restriction in family recreation” and “restrictions on family relationships”.
Limitation of the children
Participants described that the disease, its complications, and the medications’ side-effects have limited 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 an ice cream with his friends. Then, he was hospitalized for 1 year… so, we hired a teacher to teach him at home…” [p11]
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 the society and weakness of their immune system. Two parents shared their experience as:
“Everybody like 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
Participants expressed that they had to limit their social interactions due to their child’s special diet and the disease complications.
“I don’t go anywhere because of my kid. I live in my mother in-laws house. They usually go out and attend to ceremonies… But, I stay home to take care of my kid.” [p11]