Examination of Care Burden and Hopelessness Levels of Parents with Children with Epilepsy

Öz

Objective: The aim of this study was to examine the relationship between care burden and hopelessness levels of parents with children with epilepsy. Methods: The sample of this descriptive and correlational study consisted of 384 parents with children diagnosed with epilepsy between the ages of 0-18. The data of the study were collected in the Pediatric Neurology and General Pediatric Outpatient Clinics of Health Sciences University Van Training and Research Hospital between October 2017 and January 2018. Socio-demographic Data Form, Zarit Care Burden Scale and Beck Hopelessness Scale were used to collect the data. Results: In the study, it was determined that the mean care burden score of the parents was moderate (40±9.63) and the mean hopelessness score was mild (7.97±4.43). It was determined that the participants' educational status, income status and the presence of another person in need of care in the family significantly affected both care burden and hopelessness levels. A significant positive correlation was found between the duration of diagnosis, the number of hospitalisations, the duration of care and the time spent on care in a day and care burden and hopelessness. In addition, a significant positive relationship was found between caregiving burden and hopelessness. Conclusion: As the care burden of parents increases, the level of hopelessness also increases. Public health nurses working in Family Health Centres and nurses working in clinics should support families with children with epilepsy physically, socially and spiritually. Epilepsy should provide counselling services on seizures that occur due to the nature of the disease and issues that parents may be exposed to (such as guilt, family problems, hopelessness, economic difficulties, stigmatisation).

Anahtar Kelimeler

• Care burden
• epilepsy
• hopelessness
• nurse
• parents

Epilepsi Tanılı Çocuğu Olan Ebeveynlerin Bakım Yükü ve Umutsuzluk Düzeylerinin İncelenmesi

Öz

Amaç: Bu çalışmanın amacı epilepsili çocuklara sahip ebeveynlerin bakım yükü ve umutsuzluk düzeyleri arasındaki ilişkiyi incelemektir. Yöntem: Tanımlayıcı ve ilişki arayıcı tipte planlanan bu çalışmanın örneklemini 0-18 yaş aralığında epilepsi tanısı almış çocuğu olan 384 ebeveyn oluşturmaktadır. Çalışmanın verileri Ekim 2017-Ocak 2018 tarihleri arasında Sağlık Bilimleri Üniversitesi Van Eğitim ve Araştırma Hastanesi Çocuk Nöroloji ve Genel Çocuk Polikliniklerinde yürütülmüştür. Verilerin toplanmasında Sosyo-demografik Veri Formu, Zarit Bakım Yükü Ölçeği ve Beck Umutsuzluk Ölçeği kullanılmıştır. Bulgular: Çalışmada ebeveynlerin bakım yükü puan ortalamasının orta düzeyde (40±9,63), umutsuzluk puan ortalamasının ise hafif düzeyde (7,97±4,43) olduğu belirlenmiştir. Katılımcıların eğitim durumu, gelir durumu ve ailede bakıma muhtaç başka bir bireyin olmasının hem bakım yükü hem de umutsuzluk düzeylerini anlamlı düzeyde etkilediği tespit edilmiştir. Tanı süresi, hastaneye yatış sayısı, bakım süresi ve bir günde bakım için harcanan süre ile bakım yükü ve umutsuzluk arasında anlamlı bir pozitif korelasyon bulunmuştur. Ayrıca bakım verme yükü ile umutsuzluk arasında pozitif yönde anlamlı bir ilişki bulunmuştur. Sonuç: Ebeveynlerin bakım yükü artıkça umutsuzluk düzeyi de artmaktadır. Aile Sağlığı Merkezleri’nde çalışan halk sağlığı hemşirelerin ve klinikte çalışan hemşirelerin epilepsili çocuğa sahip aileleri fiziksel, sosyal ve ruhsal yönden desteklemeli. Epilepsi hastalığın doğası gereği meydana gelen nöbetler ve ebeveynlerinlerin maruz kalabileceği (suçluluk, aile içi sorunlar, umutsuzluk, ekonomik sıkıntılar, damgalanma gibi) konularda danışmanlık hizmetleri sunmalıdır.

Anahtar Kelimeler

• Bakım yükü
• ebeveynler
• epilepsi
• hemşire
• umutsuzluk

Kaynakça

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