HÜSNİYE ÇALIŞIR, SEHER SARIKAYA KARABUDAK, Pelin KARATAŞ, İfaket MEŞEALAN, AYŞE FAHRİYE TOSUN

Serebral Palsili Çocuğu Olan Annelerin Aile Yükü ve Umutsuzluk Düzeyleri

ÖzGiriş: SP’li çocukların sürekli özel ilgi ve bakıma gereksinimlerinin olması, annelerin yükünü ve umutsuzluk duygularını arttırabilir. Amaç: Bu araştırma, serebral palsili çocuğu olan annelerin yükünü, umutsuzluk düzeylerini ve aralarındaki ilişkiyi belirlemek amacıyla yapıldı. Yöntem: Kesitsel tipteki çalışma, 2010-2012 yılları arasında, bir üniversite hastanesi çocuk nöroloji polikliniğinde takip edilen 59 serebral palsi (SP)’li çocuğun anneleriyle yapıldı. Veriler, bilgi toplama formu, Zihinsel Yetersiz Çocuğu Olan Aileler için Aile Yükü Değerlendirme Ölçeği ve Beck Umutsuzluk Ölçeği (BUÖ) ile toplandı. Verilerin analizinde tanımlayıcı istatistikler ve pearson korelasyon analizi kullanıldı. Bulgular: SP’li çocukların %67.8’inin (n < 40) hastalığının ağır şiddette olduğu ve önemli bir kısmının öğrenme güçlüğü, kendine bakım verme, hareket ve iletişim sınırlılığı yaşadığı belirlendi. Bundan dolayı annelerin %78’i (n = 46) çocuğuna bakım vermede güçlük yaşadığını bildirdi. Annelerin umutsuzluk toplam puan ortalaması 7.17 ± 2.52 ve aile yükü toplam puan ortalaması ise 97.57 ± 36.08 olarak bulundu. BUÖ’nün alt ölçeği “motivasyon kaybı” ile aile yükü alt ölçeklerinden ekonomik yük (r = .36; p = .005), fiziksel yük (r = .22; p = .001), duygusal yük (r = .55; p < .001), zaman gereksinimi (r = .53; p<.001) arasında anlamlı ilişki saptandı. BUÖ’nün alt ölçeği olan “umut” ile aile yükü alt ölçeklerinden sosyal yük (r = [-.36]; p = .005), duygusal yük (r = [-.48]; p < .001), zaman gereksinimi (r = [-.37]; p = .004) arasında ters yönlü düşük düzeyde ilişki saptandı. Sonuç: Bu araştırmada, SP’li çocuğu olan annelerin yüklerinin yüksek, umutsuzluk düzeylerinin ise düşük olduğu saptandı.

Anahtar Kelimeler:

Serabral Palsi, Aile Yükü, Umutsuzluk.

Family Burden and Hopelessness Levels in Mothers of Children with Cerebral Palsy

Background: Constant needs of children with cerebral palsy for special attention and care can increase burden and hopelessness levels in their mothers. Objectives: This study was directed towards determining burden and hopelessness levels and their relation to each other in mothers of children with cerebral palsy. Methods: The study was cross-sectional and performed on 59 women whose children had cerebral palsy and were followed in a pediatric neurology clinic of a university hospital between 2010 and 2012. Data were gathered with a general characteristics-form, Family Burden Assessment Scale for the Families of Children with Intellectual Disability and Beck Hopelessness Scale. They were analyzed with descriptive statistics and Pearson correlation analysis. Results: Sixty-seven-point eight percent of the children with cerebral palsy (n = 40) had a severe disease activity and most of them had learning difficulties and limitations about performing selfcare, moving and communicating. Seventy-eight percent of the mothers (n = 46) reported to experience difficulty in caring their children. The mean hopelessness score of the mothers was 9.50 ± 5.10 and the mean score for family burden was 158.77 ± 37.18. A significant positive correlation was found between the hopelessness score and the family burden score (r = .58; p < .001). Conclusion: The study revealed that burden levels were high, but that hopelessness levels were low in the mothers of the children with cerebral palsy. It was also found that the levels of hopelessness of the mothers increased while their family burdens increased.

Keywords:

Cerebral palsy, Family Burden, Hopelessness,

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