Publication: Otizm spektrum bozukluğu olan genç yetişkinlerin ebeveynlerinin yaşam deneyimleri
Abstract
Bu araştırmada; Otizm Spektrum Bozukluğu (OSB) olan genç yetişkin çocuğa sahip ebeveynlerin OSB’li genç yetişkin bir bireyle yaşam deneyimlerine dair görüş ve gereksinimlerinin belirlenmesi amaçlanmıştır. Araştırmada nitel araştırma yöntemlerinden fenomenolojik desen kullanılmıştır. Araştırmada yarı yapılandırılmış görüşme formları kullanılmış ve bu doğrultuda yaşları 20-29 arasında değişen, özel eğitim uygulama okulundan mezun olmuş, genç yetişkin OSB’li çocuğa sahip ve onlara birincil bakım veren 16 ebeveyn ile görüşmeler gerçekleştirilmiştir. Elde edilen veriler içerik analizi yöntemiyle analiz edilmiştir. Araştırmadan elde edilen bulgularda, OSB’li genç yetişkin bireylerin mezuniyet sonrasında aldıkları eğitimin yetersiz olduğu, uygun eğitim kurumu bulmada ve etkinliklere kabul konusunda zorluk yaşadığı, ekran süresinde, yeme içme davranışlarında, takıntı ve saldırgan davranışlarında artış olduğu, aktif olma durumlarının azaldığı ve daha fazla evden çıkma isteklerinin olduğu, eğitimlerinin gerilediği ve sosyalliklerinin azaldığı gözlenmiştir. Katılımcılar, genç yetişkin OSB’li çocuğa sahip olmanın kendi sosyal yaşantılarını, iş yaşantılarını, aile yaşantılarını, gündelik hayatlarını ve ekonomilerini etkilediğini ifade etmişlerdir. Ebeveynlerin geleceklerine dair birçok kaygılarının olduğu, kendilerinden sonra çocuklarına ne olacağı konusunda endişeli oldukları, bu kaygılar karşısında geleceği düşünmeyi bırakma veya umutsuzluk duygularını yaşadıkları gözlenmiştir. Araştırma sonuçlarına göre ebeveynlerin sosyal, eğitsel, maddi ve psikolojik gereksinimler bakımından yeterli desteği alamadıkları sonucuna ulaşılmıştır. Araştırmada elde edilen bulgulara göre genç yetişkinlik dönemindeki OSB’li bireylerin aile üyelerinin yaşam kalitelerini artırmak amacıyla, çocuklarının eğitimlerinin devamlılığının sağlanması ve sürekli eğitim desteği verilmesi, ailelerin sosyal, psikolojik ve maddi yönden desteklenmesi için yeterli ve ulaşılabilir destek mekanizmalarının oluşturulması, ebeveynlerin bakım yükünü azaltmak ve sosyal yaşam kalitelerini artırmak amacıyla çocuklarını günün belirli saatlerinde bırakabilecekleri gündüz bakım evlerinin oluşturulması, ailelerin geleceğe dair kaygılarının giderilmesi amacıyla çocuklarının ileriki dönemlerde de bakım, eğitim ve sosyal yönden desteklenecekleri yapıların oluşturulması önerilmektedir.
In this study; It was aimed to determine the views and needs of parents of young adult children with Autism Spectrum Disorder (ASD) regarding their life experiences with a young adult individual with ASD. In the research, phenomenological design, one of the qualitative research methods, was used. Semi-structured interview forms were used in the research. In this regard, interviews were conducted with 16 parents whose children were between 20-29 years old, whose children graduated from a special education practice school, who had a young adult child with ASD and who gave primary care to them. The obtained data were analyzed by content analysis method. The findings of the study show that young adults with ASD have insufficient education after graduation, have difficulty in finding a suitable educational institution and being accepted to activities, there is an increase in screen time, eating and drinking behaviors, obsessions and aggressive behaviors, their activeness decreases, It was observed that their desire to go out increased, their education decreased and their sociability decreased. The participants stated that having a young adult child with ASD affected their social life, work life, family life, daily life and economy. It has been observed that parents have many concerns about their future, they are worried about what will happen to their children after them, and they stop thinking about the future or feel hopelessness in the face of these concerns. According to the results of the research, it was concluded that parents could not receive adequate support in terms of social, educational, financial and psychological needs. According to the findings obtained in the research; Ensuring the continuity of their children's education and providing continuous education support in order to increase the quality of life of family members of young adult individuals with ASD; establishing adequate and accessible support mechanisms to support families socially, psychologically and financially; establishment of day care centers where parents can leave their children at certain times of the day in order to reduce the burden of care and increase their social life quality; In order to eliminate the concerns of families about the future, it is recommended to establish structures where their children will be supported in terms of care, education and social aspects in the future.
In this study; It was aimed to determine the views and needs of parents of young adult children with Autism Spectrum Disorder (ASD) regarding their life experiences with a young adult individual with ASD. In the research, phenomenological design, one of the qualitative research methods, was used. Semi-structured interview forms were used in the research. In this regard, interviews were conducted with 16 parents whose children were between 20-29 years old, whose children graduated from a special education practice school, who had a young adult child with ASD and who gave primary care to them. The obtained data were analyzed by content analysis method. The findings of the study show that young adults with ASD have insufficient education after graduation, have difficulty in finding a suitable educational institution and being accepted to activities, there is an increase in screen time, eating and drinking behaviors, obsessions and aggressive behaviors, their activeness decreases, It was observed that their desire to go out increased, their education decreased and their sociability decreased. The participants stated that having a young adult child with ASD affected their social life, work life, family life, daily life and economy. It has been observed that parents have many concerns about their future, they are worried about what will happen to their children after them, and they stop thinking about the future or feel hopelessness in the face of these concerns. According to the results of the research, it was concluded that parents could not receive adequate support in terms of social, educational, financial and psychological needs. According to the findings obtained in the research; Ensuring the continuity of their children's education and providing continuous education support in order to increase the quality of life of family members of young adult individuals with ASD; establishing adequate and accessible support mechanisms to support families socially, psychologically and financially; establishment of day care centers where parents can leave their children at certain times of the day in order to reduce the burden of care and increase their social life quality; In order to eliminate the concerns of families about the future, it is recommended to establish structures where their children will be supported in terms of care, education and social aspects in the future.