An In-Depth Analysis of the Life Experiences of Parents with Children with Autism Spectrum Disorder

Studies report that different aspects of the family structure can be affected when a family has a child who has been diagnosed with Autism Spectrum Disorder (ASD). This study aims to determine the experiences of Turkish parents of children with ASD before, during and after the diagnosis, and how this situation affects both their individual and family lives. In the study, the data were collected using a phenomenological approach that involved the semi-structured interview method. The study sample consisted of 10 parents of children with ASD, including five fathers and five mothers. The data were analyzed using the content analysis technique, from which nine themes were identified. The themes and sub-themes identified constituted the main findings of this study. Accordingly, most of the participants stated that the ASD diagnosis of their children was late as a result of being misled, and that their children were able to develop daily life and self-care skills from the trainings they had received. Participants further reported that they had endured negative experiences, including being forced to take on part-time jobs or to go into early retirement, because of having children with ASD. Yet, in contrast to these drawbacks, the participants also stated that they had experienced positive emotions due to their children's special situation, such as looking at life from a different perspective, feeling stronger and developing different methods of dealing with ASD-related difficulties. From the results of this study, it can be suggested that additional research involving different approaches be planned to gain a better understanding of the experiences that both children with ASD and their parents face as a result of being labeled (stigmatized)

Otizm Spektrum Bozukluğu Olan Çocuğa Sahip Anne-Babaların Yaşam Deneyimlerine Derinlemesine Bakış

Studies report that different aspects of the family structure can be affected when a family has a child who has been diagnosed with Autism Spectrum Disorder (ASD). This study aims to determine the experiences of Turkish parents of children with ASD before, during and after the diagnosis, and how this situation affects both their individual and family lives. In the study, the data were collected using a phenomenological approach that involved the semi-structured interview method. The study sample consisted of 10 parents of children with ASD, including five fathers and five mothers. The data were analyzed using the content analysis technique, from which nine themes were identified. The themes and sub-themes identified constituted the main findings of this study. Accordingly, most of the participants stated that the ASD diagnosis of their children was late as a result of being misled, and that their children were able to develop daily life and self-care skills from the trainings they had received. Participants further reported that they had endured negative experiences, including being forced to take on part-time jobs or to go into early retirement, because of having children with ASD. Yet, in contrast to these drawbacks, the participants also stated that they had experienced positive emotions due to their children’s special situation, such as looking at life from a different perspective, feeling stronger and developing different methods of dealing with ASD-related difficulties. From the results of this study, it can be suggested that additional research involving different approaches be planned to gain a better understanding of the experiences that both children with ASD and their parents face as a result of being labeled (stigmatized).Çocuklarında Otizm Spektrum Bozukluğu (OSB) belirlenen aile üyelerinin bireysel ve eş olarak aile yapısını farklı açılardan etkilediği alanyazında belirtilmektedir. Bu çalışmada da çocuklarında OSB olan Türk anne-babaların; tanı öncesi, tanı süreci ve tanı sonrasında yaşadıkları deneyimlerinin neler olduğunu ve bu durumun hem kendi yaşamlarını hem de aile yaşantılarını nasıl etkilendiğine ilişkin görüşlerini belirlemektir. Araştırmada fenomenolojik desen kullanılarak yarı-yapılandırılmış görüşme tekniği kullanılmıştır. Araştırmanın katılımcıları, çocukları OSB tanısı alan beş anne ve beş baba olmak üzere toplam 10 ebeveyndir. Araştırmanın verileri içerik analizi tekniğiyle analiz edilmiş ve dokuz temaya ulaşılmıştır. Elde edilen temalar ve alt temalar araştırmanın bulgularını oluşturmuştur. Araştırma bulgularında katılımcıların çoğu, yanlış yönlendirmeler sonucunda çocuklarına OSB tanısı konulmasında geç kalındığını ve çocuklarının aldıkları eğitim sonucunda günlük yaşam ve özbakım becerilerinde gelişmeler olduğunu ifade etmiştir. Katılımcılar, OSB olan bir çocuğa sahip oldukları için yarı zamanlı iş ya da erken emeklilik gibi iş ve iş sonrası sosyal yaşamlarında çeşitli olumsuz etkiler yaşadıklarını belirtmişlerdir. Bu olumsuzlukların yanı sıra, katılımcılar çocuklarının bu özel durumundan dolayı hayata farklı bir bakış açısıyla bakma, kendini daha güçlü hissetme ve zorluklarla baş etmede farklı yöntemler geliştirme gibi olumlu duygular yaşadıklarını da belirtmişlerdir. Araştırma sonucunda; OSB olan çocukların ve anne-babalarının yaşadıkları etiketlenme (damgalanma) deneyimlerinin anlaşılabilmesi için farklı araştırma yaklaşımlarının kullanıldığı ileri araştırmaların planlanmasına ilişkin öneriler sunulmuştur

Investigation Studies in the Life Experiences of Families of Children with Autism Spectrum Disorders: A Meta-Synthesis Study

Qualitative studies that involved the parents of children diagnosed with autism spectrum disorders tend to focus on the adaptation efforts of parents after learning of the diagnosis and their experiences at the time. Identifying experiences that are associated with their child's ASD and the factors that affect their experiences are important to determine the needs of parents who have children with ASD. The present study uses a meta-synthesis method in a review of qualitative studies to investigate the experiences of parents of children with ASD, with the aim to identify common conclusions. The present study makes a review of 18 studies, selected from national and international literature and published between 2008 and 2017, that met the criteria of the study. All of the studies adopted a phenomenology pattern as a qualitative research method to investigate the life experiences of parents of children with ASD, and an overall assessment of the reviewed studies revealed the following four salient themes: the effects of cultural differences on experiences, coping strategies, labeling and advocacy. Further research may focus on such factors as culture and advocacy, both of which influence the parental experience

Investigation Studies in the Life Experiences of Families of Children with Autism Spectrum Disorders: A Meta-Synthesis Study

Qualitative studies that involved the parents of children diagnosed with autism spectrum disorders tend to focus on the adaptation efforts of parents after learning of the diagnosis and their experiences at the time. Identifying experiences that are associated with their child’s ASD and the factors that affect their experiences are important to determine the needs of parents who have children with ASD. The present study uses a meta-synthesis method in a review of qualitative studies to investigate the experiences of parents of children with ASD, with the aim to identify common conclusions. The present study makes a review of 18 studies, selected from national and international literature and published between 2008 and 2017, that met the criteria of the study. All of the studies adopted a phenomenology pattern as a qualitative research method to investigate the life experiences of parents of children with ASD, and an overall assessment of the reviewed studies revealed the following four salient themes: the effects of cultural differences on experiences, coping strategies, labeling and advocacy. Further research may focus on such factors as culture and advocacy, both of which influence the parental experience