Fifteen mothers and five fathers of children with epilepsy, and three nurses were interviewed. The Interviews were conducted twice for three mothers (26 interviews in total). Participants were 28-52 years old (mean 33.5±2.2 years). The children had epilepsy with various intensities (generalized epilepsy, focal epilepsy, and generalized and focal epilepsy), and various treatment regimens (types of drugs). The parents of children with drug-resistant epilepsy and parents of children with other chronic illnesses in addition to epilepsy were excluded from the study.
After analyzing the data, the coping process of parents in caring for a child with epilepsy was described.
In this study, parents of children tried to prepare an excellent situation for them. They were using all available resources. Despite the lack of resources and support, as well as the burden of treatment costs, they resolved these problems by searching and using different strategies.
The coping process had five phases: disbelief, patience, change to preserve, acceptance of the current condition, and self-empowerment.
In summary, parents of children with epilepsy have a 5-phase coping strategy. The core category is "continued efforts of parents to restore calm."(table3)
1.Disbelief: the parents of these children did not believe in their disease. This category consisted of three subcategories: denial of the child's illness, escape from reality, looking for the guilty person.
1.1. Denial of the child's illness
Almost none of the parents of these children accepted the condition in the first phase of the disease diagnosis.
Participant No.23 said she had taken her child to several doctors after the diagnosis because she could not accept the reality. Her husband and she had thought that their child had no problem
1.2. Escape from reality
Some of the parents did not follow their sick child treatment. They did not do anything about the definite diagnosis and treatment. They often referred to the hospital when the child's condition was terrible, and the symptoms of the disease worsened.
Therefore, the family were subject to more severe psychological complications, which made the treatment more difficult and complicated.
Participant No.21 believed that some parents did not want to accept their child's disease and reality. They were looking for a new diagnosis, so they changed the doctor.
1.3. Looking for the guilty person: feeling guilty after the definite diagnosis, the parents sought to find the guilty person behind their child's problem.
Participant No. 5 said she had protested against God because of her child’s condition. She had begged God to punish her rather than her child.
2. Patience: this category included two subcategories:" tolerance of care "and "endurance of great sufferings ".Almost all of the participants tried to be patient throughout every stage of their children's illness and treatment; they tried to tolerate the tension inherent in the condition.
2-1.tolerance of care: the parents patiently cared for their sick child at all stages and endured many hardships.
Participant No. 4 said she had breastfed her son slowly without any hastiness because he was not strong enough to suck.
Participant No. 10 said she had not taken her son to the hospital in the planned time because of her bad financial status.
2-2. Endurance of great sufferings: in this study, all the parents mentioned the problems they faced directly or indirectly, and the burdens imposed on them throughout this period.
Participant No. 1 said she had locked herself up at home for at least six months in order not to expose her child to various diseases. She also rarely had gone to the parties to protect her child against diseases.
Participant No. 6 said she had had a difficult situation last year because her son’s condition had not been clear. She had had to take him to kindergarten and go to work but it was hard for her son to stay there without his mother.
3. Change to preserve: In this study, change to preserve included two sub-themes: the pressure of the condition imposed on oneself, and change of the routine life.
3-1. the pressure of the condition imposed on oneself: the parents experienced a difficult condition after the child illness. Most study participants had to tolerate some problems because they had no choice.
Participant No. 6 said she had had to take her daughter to the kindergarten for a few days, but her teacher had not accepted to give her medications. Therefore, she had had to wake her up early in the morning and give her medications, and then take her to the kindergarten.
Participant No. 2 said she had had to cook healthy food for her son, and she had prepared fresh food for him.
3-2. Change of the routine life: Because of their child's illness and need for care, the parents tried to adjust their life to spend much time with their child, even if they had to leave their education or their job.
Participant No. 6 said she had been afraid of leaving her daughter alone in the kindergarten. Therefore, she had consulted with her daughter’s doctor who wrote a letter to her workplace, and explained her daughter’s condition. Then, she had gotten an unpaid leave for three years to take care of her daughter.
Participant No. 5 said she had left her job because of her child’s illness.
4. Acceptance of the current situation: in this study, acceptance of the condition consisted of two sub-themes: parental acceptance of the child's condition and child’s acceptance of the parents' limitations.
4-1. Parental acceptance of the child's situation: in this stage, the parents accepted their child's illness, inabilities, and limitations after some vicissitudes.
Participant No. 3 said her daughter, husband and she had had to come back home very early after going to a party such as a wedding party because her daughter had gotten very tired late at night. Sometimes, she had preferred to stay at home with her daughter. She had not wanted to impose any pressure or stress on her daughter because her appearance changed when she got upset or angry.
4-2. Child’s acceptance of the parents' limitations: some 5-6-year old children can manage themselves. For example, when they have shortness of breath or lack of physical strength and face an epileptic episode, they immediately go to a safe place. They cooperate well with their parents, especially when their mothers instruct them what to do during an epileptic seizure. Participant No 2 said she had not allowed her son to play outside the house. Instead, she had asked his friends and him to stay at home and play computer games. Her son had realized that running and playing outside the house was not good for him.
5. Self-empowerment: it included self-empowerment of the children to perform self-care activities and use resources and facilities provided by their parents.
5.1. Self-empowerment of the child: children usually become aware of their limitations when they are 5-6 years old, and they can manage themselves. Their mothers mentally prepare them to have more cooperation. They provide necessary information about self-protection..
Participant No. 13 said her son had been aware of the activities that made him feel bad. She had trained and informed him not to do some exercises. She had reminded him the caring tips
Participant No. 14 said his son had been able to search for things related to his disease or problems as well as the answers of questions in the field of his illness.
5.2. Self- empowerment of the parents: parents could empower themselves using resources and facilities available for caring of the child. They tried to provide appropriate care using consultation with professional people (nurses, doctors), innovative methods of care, obtaining information from various sources (books, internet), and using others' experiences.
Participant No.6 said her husband and she had visited a psychologist sometimes to behave their child properly and remove his/her stress.. They had followed the recommendations of the psychologist and carried out all of them].