Impact of Childhood Epilepsy on the Family

Abstract

Whole family is affected when an illness appears in the family or when there is an uncertainty regarding the health of a member. Symptoms, therapy, course of the disorder, constraint of the daily activities and long term effects of childhood chronic diseases deeply impact health and structure of the families. Diagnosis of a chronic disease in children presents as a significant psychological and psychosocial risk factor to the parents and other family members. Despite these known facts, psychosocial problems of parents of epileptic children are often ignored and not even questioned. These parents frequently have to leave their jobs or ask for their elderly relatives to look after their children. This situation could lead to major financial and social problems, weakening in intrafamilial communication and disruption in family harmony. Childhood epilepsy brings a great strain on family's resources as other chronic diseases do and alter the life of significant others. According to biopsychosocial model, schemas in family relations influence the psychological process of the family members while the biopsychosocial process of the sick individual affect the functionality of the family. In other words, epilepsy affects not only the sick individual but also the family union. The family has to face many problems after definite diagnosis of epilepsy. Majority of the studies conducted on this issue mainly focused on the quality of life and family relations of the sick child, whereas only a few studies searched for possible burden and resulting problems of family members caused by epilepsy. Physicians in charge should not only focus on physical and mental health of the sick children but also on the problems of other members in the family bearing in mind psychosocial influences of the disorder on them. Additionally, preventive methods should be administered to protect the family from developing mental health problems. A multidiscipline training program aiming to provide social and psychiatric support would increase the awareness of the families about their coping system with the disease and thus revise their likely dysfunctional approaches.

Keywords

• Epilepsy, Child, Family Functioning, Anxiety, Coping Skills

Çocukluk Çağı Epilepsisinin Aileye Etkisi

Öz

Ailede bir hastalık ya da aile bireyleriyle ilgili bir belirsizlik olduğunda tüm aile etkilenir. Çocukluk dönemi kronik hastalıkları, belirti, sağaltım yöntemi, seyri, günlük aktivite kısıtlaması, uzun dönem etkisi gibi nedenlerle aileye birçok yük getirmektedir. Bir çocuğun kronik hastalık tanısı alması uzun dönemde ebeveyn ve diğer aile üyeleri üzerinde ruhsal ve psikososyal risklerin ortaya çıkmasına neden olmaktadır. Epilepsili çocukların ebeveynleri pek çok ruhsal sorun yaşamasına rağmen, genellikle ihmal edilmektedir. Bu ebeveynler sıklıkla işlerinden ayrılmak zorunda kalmakta ya da çocuklarının bakımını yaşlı akrabalarına bırakmaktadır. Bu durum büyük ekonomik ve sosyal sorunlara ve epilepsinin tahmin edilemeyen özellikleri ile ailede zayıf iletişime, ailenin uyumunun bozulmasına neden olmaktadır. Çocukluk dönemi epilepsileri diğer kronik hastalıklar gibi ailenin var olan kaynaklarında değişiklikler talep etmesinden dolayı tüm aileyi etkilemektedir. Biyopsikososyal modele göre aile ilişkilerinde işleyen kalıplar aile bireylerinin ruhsal süreçlerini, hasta bireyin biyopsikososyal süreçleri de ailenin işlevsellik sürecini etkilemektedir. Başka bir deyişle epilepsi yalnız epilepsili kişiyi etkilememekte, bir birim olan ailenin de etkilenmesine neden olmaktadır. Aile çocuğun epilepsi tanısı alması ile birlikte birçok sorunla yüzleşmek zorunda kalmaktadır. Epilepsi ile ilgili çok sayıda çalışmada hastanın yaşam kalitesi ve ailesiyle ilişkisi incelenmesine rağmen, az sayıda çalışmada ise epilepsiden kaynaklanan aile bireyleriyle ilgili sorunlar üzerinde durulmuştur. Aile bireylerinden her hangi bir kişide epilepsi olması durumunda yalnız hastanın sorunlarına odaklanılmamalı, ailedeki diğer bireylerinde de bu durumdan etkilenileceği düşünülüp tüm aile bireylerinin ruh sağlığını korumaya yönelik önleyici yöntemler geliştirilmeli ve uygulanmalıdır. Farklı disiplinlerden uzman kişilerle birlikte uygulanacak sosyal ve psikiyatrik destek hedefli eğitim programları ile ailelerin mevcut hastalıkla başa çıkma sistemlerine olan farkındalıkları artırılarak sorunlu yaklaşımlarını düzeltmeleri sağlanabilir.

Anahtar Kelimeler

• Epilepsi, Çocuk, Aile İşlevleri, Kaygı, Başa Çıkma Tutumu

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