Turkiye Klinikleri Journal of Health Sciences

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Epilepsi Tanısı Alan Çocukların ve Ailelerinin Deneyimleri ve Nöbet Yükleri: Fenomenolojik Bir Araştırma
Experiences and Seizure Burdens of Children Diagnosed with Epilepsy and Their Families: A Phenomenological Research
Deniz S. YORULMAZa, Sevil ÇINARb, Yalçın KANBAYc
aArtvin Çoruh Üniversitesi Sağlık Bilimleri Fakültesi, Hemşirelikte Esaslar ABD, Artvin, TÜRKİYE
bArtvin Çoruh Üniversitesi Sağlık Bilimleri Fakültesi, Acil Yardım ve Afet Yönetimi ABD, Artvin, TÜRKİYE
cArtvin Çoruh Üniversitesi Sağlık Bilimleri Fakültesi, Psikiyatri Hemşireliği ABD, Artvin, TÜRKİYE
Turkiye Klinikleri J Health Sci. 2021;6(4):734-44
doi: 10.5336/healthsci.2020-80352
Article Language: TR
Full Text
ÖZET
 Amaç: Epilepsi, beyindeki değişik patolojik süreçlerin neden olduğu 2 veya daha fazla uyarısız nöbet ile kendini gösteren kronik ve nörolojik bir bozukluktur. Dünyada yaklaşık 50 milyon bireyi etkileyen epilepsi, kronik, bulaşıcı olmayan ve yıllara göre küresel hastalık yükünü artıran, önemli bir sağlık sorunudur. Epilepsi hastalığı, çocukluk döneminde en sık görülen nörolojik hastalıktır ve dünya genelinde 33 milyon epilepsi hastası çocuğun olduğu tahmin edilmektedir. Bu araştırmada, epilepsi tanısı alan çocukların ve ailelerinin deneyimlerinin ve nöbet yüklerinin belirlenmesi amacıyla yapılmıştır. Gereç ve Yöntemler: Araştırmada, nitel araştırma yöntemlerinden fenomenolojik yaklaşım kullanılmıştır. Araştırmanın örneklemini 15 ebeveyn, 7 epilepsi tanısı almış çocuk ve 7 bu çocukların kardeşleri olmak üzere toplam 29 kişi oluşturmuştur. Araştırmanın verileri sosyodemografik bilgi formu ve yarı yapılandırılmış görüşme formu ile toplanmıştır. Görüşmelerden elde edilen veriler, içerik ve tema analizi yöntemleri kullanılarak değerlendirilmiştir. Bulgular: Epilepsi tanısı alan çocuklar ve aileleri ile yapılan görüşmeler sonucunda ortaya çıkan temalar (1) 'en çok etkilenen yaşam alanı', (2) 'baş etme ve uyum çabaları', (3) 'bakım verme yükü', (4) 'psikolojik tepkiler' olarak sıralanmıştır. Sonuç: Bu çalışmada, epilepsi tanısı alan çocukların ve ailelerinin tedavi ve bakım sürecinde kaygı, stres, endişe, ölüm korkusu, bakım verme zorluğu, ekonomik zorluk yaşadıkları, stigmaya maruz kaldıkları ve epilepsi nöbetlerinin çocukların ve ailelerinin hayatlarına bir takım yükler getirdiği belirlenmiştir.

Anahtar Kelimeler: Epilepsi; aile; çocuk; nöbet
ABSTRACT
 Objective: Epilepsy is a chronic and neurological disorder that presents with two or more non-stimulated seizures caused by various pathological processes in the brain. Epilepsy, which affects approximately 50 million individuals in the world, is a chronic, non-contagious health problem that increases the global disease burden over the years. Epilepsy is the most common neurological disease in childhood, and it is estimated that there are 33 million children with epilepsy worldwide. This study was conducted to determine the experiences and seizure burdens of children diagnosed with epilepsy and their families. Material and Methods: Among the qualitative research methods, phenomenological research design was used in the study. The sample of the study consisted of a total of 29 individuals, including 15 parents, 7 children diagnosed with epilepsy, and 7 siblings of these children. The study data were collected by a sociodemographic information form and semi-structured interview form. The data obtained from the interviews were evaluated using content and theme analysis methods. Results: The themes that emerged as a result of the interviews with children diagnosed with epilepsy and their families were as follows: (1) "most affected niche"; (2) "coping and adjustment efforts"; (3) "burden of care "; (4) "psychological responses". Conclusion: In this study, it was found that the children diagnosed with epilepsy and their families experienced anxiety, stress, fear of death, difficulty in providing care, economic difficulties, and stigma during the treatment and care process, and the epilepsy seizures were found to cause a number of burdens on the lives of the children and their families.

Keywords: Epilepsy; family; child; seizure
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