Experiences of individuals whose sibling has epilepsy

This research was carried out using a qualitative research design with a phenomenological approach to describe the life experiences of individuals who have a sibling with epilepsy. The sample of the study was determined by the snowball sampling method of patients diagnosed with epilepsy at least 6 months ago; It consisted of 10 healthy siblings between the ages of 6-18 who voluntarily agreed to participate in the study who met the inclusion criteria. The data were collected by the researchers with a personal information form prepared in line with the national and international literature and semi-structured interviews. Before the interview, verbal and written consent was obtained from the siblings, and it was collected by in-depth interview technique using a voice recorder. The interviews lasted between 45 and 90 minutes. In the analysis of the research, an inductive approach was adopted by using content analysis. Average age of siblings is 13.4±3.97, gender is 90% female, education level is 30% primary school, 30% secondary school, 30% high school, social environment 40% rural, 60% urban, family structure 80% nuclear, 20% large the mean age of the sick sibling was 12.2 ± 7.45, the disability status of the sibling was found to be 70% disabled and 30% non-disabled. As a result of the interviews, the experiences of individuals who have a sibling with epilepsy were themed in three dimensions. These; 1. The meaning of having a sibling with epilepsy, 2. Experiences related to the disease process and seizures, 3. Family relations, social and educational life experiences. The meaning of the sibling's epilepsy for the healthy sibling, under the theme of "responsibility", under the theme of "being alert and not being able to leave alone", "care responsibility", "taking a role" and "rescuer role", their experiences with the disease process and seizures. under the theme of "fear and sadness", in the subcategories of "seizure" and "illness", and their experiences related to family relations, social life and education life into "emotional", "social", and "educational" subcategories under the theme of "deprivation". separated. This study, which investigates the experiences of siblings with epilepsy with a qualitative study method, provides important data from the perspective of siblings who have had the experience directly. It is believed that these results will play an important role in understanding what individuals with a sibling with epilepsy are going through, and in developing supportive approaches and programs for the sibling and family. Since the responsibilities of the healthy sibling to the sick sibling may be a result of the burden of parental care, other family members should also participate in the care of the sick child, and psychosocial support should be provided to the sibling and family. This will be effective in reducing the stress, fear, sadness and anxiety experienced by both the family and the siblings.