The Experiences of Families with Autistic Children with Their Financial Burden

Abstract

Autism is a neurodevelopmental disorder associated with impairments in social ability, social activity, communication, and imagination, and repetitive restricted behavioral patterns. The increase in the global prevalence of autism in recent years has led to an increase in the importance of studies focusing on individuals with autism and their families. Because autism is a developmental disorder that affects not only the individual but also the family and then the immediate environment. Families with autistic children face many difficulties, and perhaps the most important of these difficulties, financial difficulties, are directly related to many difficulties experienced by families. The aim of this study is to understand the experiences of families with children with autism regarding the financial difficulties they face due to diagnosis, treatment, education, therapies and other unaccounted expenses. In this direction, it was designed as a qualitative research with the parents of individuals under the age of 18 who were medically diagnosed with autism. 20 parents and 17 professionals from different professions working in the field of autism participated in the study and in-depth interviews were conducted with them through semi-structured interview forms. The data obtained was analyzed through the MAXQDA 2020 program and explained in a language suitable for the literature and understandable. Families face serious financial difficulties in diagnosis, treatment, education and rehabilitation expenditures. In addition, expenditures related to diet and other health care services wear down families financially.

Keywords

• autism
• financial burden
• social work
• rehabilitation

Otizmli Çocuğa Sahip Ailelerin Finansal Yüklerine İlişkin Deneyimleri

Abstract

Otizm, sosyal yetenek, sosyal aktivite, iletişim ve hayal gücündeki bozukluklar ile tekrarlayan kısıtlı davranış kalıplarıyla ilişkili nöro-gelişimsel bir bozukluktur. Son yıllarda otizmin küresel yaygınlığının artması otizmli bireyler ve ailelerini odak alan çalışmaların öneminin artmasına neden olmuştur. Zira otizm sadece bireyi değil başta ailesi daha sonra yakın çevresini etkileyen gelişimsel bir bozukluktur. Otizmli çocuğa sahip aileler birçok zorlukla karşı karşıyadırlar ve bu zorluklardan belki de en önemlisi olan finansal zorluklar ailelerin yaşadığı birçok zorlukla da doğrudan ilişkilidir. Bu çalışmanın amacı otizmli çocuğa sahip ailelerin tan, tedavi, eğitim, terapiler ve diğer hesap dışı harcamalar dolayısıyla karşı karşıya oldukları finansal zorluklara ilişkin deneyimlerini anlamaktır. Bu doğrultuda tıbbi olarak otizm tanısı almış 18 yaş altı bireylerin ebeveynleri ile nitel bir araştırma olarak tasarlanmıştır. Çalışmaya 20 ebeveyn ve otizm alanında çalışan farklı meslek elemanlarından 17 profesyonel katılmış ve kendileri ile yarı yapılandırılmış görüşme formları aracılığıyla derinlemesine görüşmeler gerçekleştirilmiştir. Elde edilen verilen MAXQDA 2020 programı aracılığı ile analiz edilerek literatüre uygun ve anlaşılır bir dille açıklanmıştır. Aileler tanı, tedavi, eğitim ve rehabilitasyon harcamaları konusunda ciddi mali zorluklarla karşı karşıyadır. Bunlara ek olarak diyet ve diğer sağlık hizmetleriyle ilgili harcamalar aileleri finansal açıdan yıpratmaktadır.

Keywords

• otizm
• finansal yük
• sosyal hizmet
• rehabilitasyon

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