Of the 23 study participants, fifteen mothers, five fathers of children with epilepsy, and three nurses were interviewed. The Interviews were conducted twice for three mothers (26 interviews in total). The range of age for participants was 28-52 years (average 33.5±2.2 years). The interviewed parents all had children with epilepsy of different intensity (generalized epilepsy, focal epilepsy, and generalized and focal epilepsy), and various treatment (types of drugs) were being treated in hospitals. Any patients did not have drug- resistance epilepsy, and all the children studied had only epilepsy, not any other disease.
After analyzing the data, the coping process of parents in living with children suffering epilepsy was described.
In this study, parents of children tried to prepare an excellent situation for their child. They were using all available resources. Although the lack of resources and support, as well as their child's care, were excessive burdens on them, they resolved these problems by searching for different strategies and using them to manage care for their children in a peaceful state and to get the best results.
The adaptation process had five phases: Disbelief, Patience on what happened, change to preserve, acceptance of the current situation, and self-empowerment.
In summary, parents of children with seizure have a 5-phase coping strategy. The core category is achieved "continued efforts of parents to restore calm."(table2)
- Disbelief: the parents of these children did not believe their child’s disease. This category consisted of three subcategories "Denial of the child's illness, Escape from reality, looking for guilt."
1.1. Denial of the child's illness
Almost the parents of these children, in the first phase of the diagnosis of disease, did not accept their situation.
Participant no.23 said, [After the diagnosis, I did not think that. I took my child to this doctor and that doctor. Maybe one of them rejected the diagnosis. My husband told me, "This child did not have any problem. He is healthy. Not take him to the doctor].
1.2. Escape from reality
Some of the parents did not follow to treat their sick children. They did not do anything about the definite diagnosis and treatment. They often referred to the time that the child’s condition was terrible, and the symptoms of the disease were aggravated.
This subject caused more severe psychological complications for the family and made the treatment more difficult and complicated.
Participant no.21 said, [some parents did not want to accept their child’s disease. They did not want to accept reality. They wanted to achieve new things. A new diagnosis. For this reason, they changed the doctor].
1.3. Looking for guilt: feeling guilty and guilty of participants, after the definite diagnosis, the parents sought to find the culprit behind their child's problem.
Participant no 5 said, [I told God, what you do my God, what did you get from this kid? On the night of winter, I swore allegiance to God. I said, [If I'm guilty why my child .you have to punish me].
- Patience on what happened: this category included two subcategories:" tolerant care "and"endure of great sufferings ".Almost all of the participants in this experiment tried to be patient throughout every stage of their children’s illness and treatment; they tried to tolerate the tension inherent in the situation.
2-1.tolerant care: The parents patiently nursed their sick children at all stages and endured many hardships during their child's illness.
Participant No. 4 said: [When I was breastfeeding my child, I did not rush him to suck and drink faster, because he didn't have enough strength to suck and he was breathing slowly. So I breastfed him slowly].
Participant no. 10 said: [Because of my bad financial situation, it took a while for me to take my child to the hospital, which was tough].
2-2: endure of great sufferings: in this study, all the parents mentioned directly or indirectly the problems that they had to face, and the burdens that they carried throughout this period.
participant no. 1 said: [I locked myself up at home for at least six months, because I didn't want my child to be exposed to any disease, and if I attended even a small party, I would make sure that no one had a cold ].
Participant no. 6 said: [I had a difficult situation last year because my child's situation wasn't clear. I didn't know what to do with him when I got to work. When I wanted to take him to kindergarten, it was tough for him. It was a hard time. I did not know what to do. I don't want to experience those days again].
- Change to preserve: In this study, change to preserve included two sub-themes: first, imposing the pressure of the situation on oneself, and second, changing the life routine.
3-1. Imposing the pressure of the situation on oneself: Parents experienced a difficult situation after their child fell sick. They had to endure some problems related to this particular condition. many cases studied, parents endure some problems, because there were no other solutions to the problem or because they were unable to do anything other than tolerate the situation.
Participant no. 6 said: [For a few days when I took my child to kindergarten in the morning, her teacher would say that she would not give her medicine. I had to wake her up early in the morning and give her the medicine, then take her to kindergarten. Normally I would have never awakened her from his sleep, even if I had an important job to take care of. I would let her sleep].
Participant no. 2 said: [I always made healthy, nourishing food for my child. I had to make it. It was my responsibility. I forced myself to make fresh food for him every day].
3-2. Changing the life routine: Because of their child’s illness and need for care, the parents tried to adjust their life to give themselves more opportunities to spend time with their child, even if they had to leave her education or her job.
Participant no. 6 said:[ I was so scared that something would happen to my child at kindergarten. Finally, after thinking a lot, I decided to consult with her doctor. Her doctor wrote a letter for my workplace that my child couldn’t be left at kindergarten and that due to her special condition and problems, emotional attachment, and psychological dependence, she may get hurt. So I got three years of unpaid leave].
Participant no. Five said: [After my child got sick, I couldn't work].
- Acceptance of the current situation: In this study, acceptance of the situation consisted of two sub-themes: acceptance of the child’s situation by the parents and acceptance of the parents’ limitations by the child.
4-1. Acceptance of the child’s situation by the parents: in this stage, the parents accepted their child's illness, inabilities, and limitations after some emotional ups and downs.
Participant no. 3 said: [Even when we go to a wedding, we return home very early or I stay home with the child because she gets so tired later at night. I don't want any pressure or stress on her. She is not a normal kid; she needs special care. When she gets upset or angry, her appearance was changed].
4-2. Acceptance of the parents’ limitations by the child: Usually, sick children realize their inabilities to perform some tasks by the age of 5-6 years. When they face shortness of breath or lack of physical strength, and at the beginning of seizure attack, they can manage themselves, quite the task at hand, and went to a safe place. They cooperate well with their mothers and fathers in this matter, especially those mothers who always speak to their children, give them instructions, and educate them regarding their situation. Participant no 2 said: [When he goes to play with other kids, he takes them home to play Ludo or computer games instead of going out to run with them. He realizes that running makes him feel bad].
- Self-empowerment: Self-empowerment in this study included self-empowerment of the children in order to perform self-related caring activities and usage of resources and possibilities by parents for the self-empowerment of themselves.
5.1. Self-empowerment of the child: Children usually became aware of their limitations from 5-6 years old, and they could manage their situation. Mental preparation by their mothers is created caused the Children had more cooperation with parents. They always talked to their child about methods of self-protection and provided the necessary training to them.
Participant (13) expressed:[ my child always knows when he should rest when he is running or which activities will make him feel bad. I have ever trained him. I tell him not to do some exercises. I provide information to him. I always say to him lets search together. I still talk to him and remind him about care tips].
Participant (14) expressed:[ Now he can search for things related to his disease or problems which have shaped up in his mind because he has gotten older and he always searches for the answers of questions in the field of his illness].
5.2. Self- empowerment of the parents: parents in this study can try for the self-empowerment of themselves using resources and facilities which exist for caring of the child. They tried to provide useful and practical care using consultation with professional people (nurses, doctors), the application of inventiveness, obtaining information from intelligence sources (books, internet), and using others' experiences.
Participant (6) expressed:[ My husband and I visited Psychologist a few times before because we felt we should have proper behavior toward the child. I asked my questions from Psychologist about what should I do with this child and how should I behave so that he does not become capricious and also will not have stress. I paid attention to the recommendations of the psychologist and carried out all of them].