In my master's thesis, I studied the experiences of mothers of children with epilepsy. I focused on the experience of mothers upon receiving the diagnosis, how they cope with it, how it affects them personally, their family and their family dynamics, work, daily activities, and various other experiences, particularly how they cooperated with doctors and informed kindergartens or schools about their child’s illness and the institution’s response. The study included 12 mothers of children with epilepsy, with whom I conducted a semi-structured interview. Following the procedure of grounded theory, six main categories with the corresponding subcategories were created. Mothers reported mainly negative feelings when the child was diagnosed and during epileptic seizures, when the feeling of shock and fear prevailed. Some of the participants found it difficult to come to terms with the diagnosis of the children at the beginning, but for some it was a relief. Mothers reported the impact of a child’s diagnosis on various areas of their life. In family relationships, they reported changes when it comes to having a better connection with their child, normalizing epilepsy, distancing from their partner and trying to maintain relationships with other family members. Among other things, they reported especially adapting to their child's needs, difficulties in finding care for the child, problems with sleeping, and adjusting travel and work to the child's needs. When it comes to their experiences with health care, participants reported positive experiences, especially good cooperation and exchange of information with doctors and negative experiences in connection with the lack of information and the need for self-initiative in the child's treatment. When enrolling children in kindergarten, mothers reported mostly positive experiences, while those who enrolled their children in school sometimes reported negative experiences due to a lack of understanding of the child's needs. Mothers use a variety of strategies to cope, predominantly conversations with loved ones and families with similar experiences, self-care, and seeking information about epilepsy. Based on these findings, the conclusion also describes cases where psychologists could help to overcome the obstacles of parents and children in different areas.
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