Otizm Spektrum Bozukluğu Tanısı İle Yaşamak: Ailelerin Deneyimleri

Abstract

Giriş ve Amaç: Sosyal ve iletişimsel kısıtlılık ile tekrarlayıcı ve kısıtlı davranışlarla karakterize bir nörogelişimsel bozukluk olan Otizm Spektrum Bozukluğu’nun (OSB) sıklığı dünyada giderek artmaktadır. OSB tanısı konan çocuğun tipik gelişim gösteren yaşıtlarına göre gereksinimlerinin daha fazla olması, bu gereksinimleri karşılama sorumluluğunu da arttırmakta ve bu durum ailelerin hayatını zorlaştırabilmektedir. Bu araştırmada, okul öncesi dönemde OSB tanısı konmuş çocuğu olan ailelerin yaşadıkları deneyimlerin ve tanının yaşamlarına etkisinin derinlemesine incelenmesi hedeflenmiştir.

Yöntem: Bu amaçla OSB tanısı konmuş çocuğu alan 19 anne ile yarı yapılandırılmış bireysel görüşmeler yapılıp, sonrasında veriler tematik analiz yöntemiyle kodlanmıştır.

Bulgular: Çalışmanın sonucunda, OSB tanısının aile ilişkileri, sosyal yaşam ve iş hayatı üzerinde yarattığı olumsuz etkiler ortaya konmuştur. Ayrıca, OSB tanısı konmuş çocuğun ve ebeveynlerinin günlük hayatta, okul hayatında ve sağlık hizmeti alırken yaşadıkları zorluklar belirlenmiştir.

Sonuç: Bu çalışmanın bulguları, OSB tanısı konmuş çocuğu olan ailelerin deneyimlerini ve yaşadıkları zorlukları derinlemesine anlama olanağı verdiğinden, alanda hizmet verenler ve politika yapıcılar tarafından dikkate alınmasının yararlı olacağı düşünülmektedir.

Keywords

• Otizm spektrum bozukluğu
• erken çocukluk dönemi
• aile deneyimleri

Living With Autism Spectrum Disorder: Family Experiences

Abstract

Background and Objectives: The prevalence of Autism Spectrum Disorder (ASD), which is a neurodevelopmental disorder characterized by impairments in social interaction and communication in addition to repetitive restricted behaviors, is increasing globally. Increased caretaking demands of children diagnosed with ASD, thereby increased responsibilities of their parents may put a burden on each family member and their whole familial experiences. This study aimed to explore the effects of ASD diagnosis from the perspective of whole family life in order to gain an in-depth understanding of the experience of ASD.

Method: Semi-structured interviews were made with 19 mothers having a preschool-aged child diagnosed with ASD. Then the data were coded by a thematic analysis method.

Results: The results of this study revealed the unfavorable effects of ASD diagnosis on interpersonal relationships, social life, and work life of participants. Moreover, the challenges faced by the child diagnosed with ASD and their parents in daily life, school life, and while receiving care in medical settings were identified.

Conclusion: Since the current study provides an opportunity to gain a deeper understanding of the challenges faced by families raising a child with ASD, results of this study would be beneficial for service providers and health policymakers to provide a better support to the children with ASD and their families.

Keywords

• Autism Spectrum Disorder
• early childhood
• family experiences

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