Experiences of Mothers of Multiple Children with Autism Spectrum Disorder: An Interpretative Phenomenological Analysis Study

Year 2023, Volume: 24 Issue: 2, 215 - 234, 01.06.2023

Hatice Şengül Erdem

https://doi.org/10.21565/ozelegitimdergisi.1013765

Cited By: 1

Abstract

Introduction: This study aimed to investigate the experiences of mothers of multiple children with autism spectrum disorder (ASD).
Method: Nine mothers of multiple children with ASD participated in the research, designed as an interpretative phenomenological analysis study, and data were collected through semi-structured interviews. In the data analysis, the interpretative phenomenological analysis method was employed to reveal the mothers’ personal statements and emotional reflections in depth.
Findings: As a result of the analysis, three main themes were reached, the center of life: Being a mother of two children with autism, gradually increasing isolation, and empowerment attempts. In line with the findings, mothers continue their lives by putting their children with ASD at the center, and they become increasingly lonely in social life. Mothers experience difficulty in maintaining their daily lives, have intense worries about the future, think that they lack the support resources they need, and feel that having multiple children with ASD causes transformations in their relationships with their spouses and their social networks, which will increase their loneliness. Furthermore, mothers develop various strategies to empower themselves. These strategies have emerged as religious beliefs, comparing their children with each other or with children with more severe disabilities, and focusing on the minor achievements of their children.
Discussion: There are few studies on the subject, and the experiences of mothers of multiple children with ASD are similar to the findings of research investigating the experiences of mothers of multiple children with disabilities or mothers of a child with ASD.
Conclusion and Recommendations: Whereas mothers of multiple children with ASD experience intense social isolation and put the “motherhood role” at the center of their lives, on the one side, they feel obliged to empower themselves and develop some strategies to this end, on the other side. According to the study findings, it is suggested that arrangements are needed to facilitate the lives of mothers of multiple children with ASD and the experiences of mothers should be examined with studies to be performed with a larger number of participants.

Keywords

Mothers, experience, stigmatization, empowerment, autism spectrum disorder (ASD), interpretative phenomenological analysis (IPA)

Otizm Spektrum Bozukluğu Olan Birden Fazla Çocuğa Sahip Annelerin Deneyimleri: Yorumlayıcı Fenomenolojik Analiz Çalışması

Abstract

Giriş: Bu çalışmada, otizm spektrum bozukluğu (OSB) olan birden fazla çocuğa sahip annelerin deneyimlerinin derinlemesine incelenmesi amaçlanmıştır.
Yöntem: Yorumlayıcı fenomenolojik analiz çalışması olarak desenlenen çalışmaya OSB olan birden fazla çocuğa sahip dokuz anne katılmış ve veriler yarı-yapılandırılmış görüşmeler yoluyla toplanmıştır. Verilerin analizinde annelerin kişisel söylemlerinin ve duygusal yansımalarının derinlemesine ortaya konabilmesi için yorumlayıcı fenomenolojik analiz yöntemi kullanılmıştır.
Bulgular: Analiz sonucunda yaşamın merkezi: İki otizmli çocuk annesi olmak, gittikçe artan izolasyon ve güçlenme çabaları olmak üzere üç ana temaya ulaşılmıştır. Bulgulara göre anneler yaşamlarını OSB olan çocuklarını merkeze alarak sürdürmekte ve sosyal yaşam içinde gittikçe yalnızlaşmaktadırlar. Anneler, günlük yaşamlarını sürdürmekte zorlanmakta, yoğun bir gelecek endişesi yaşamakta, ihtiyaç duydukları destek kaynaklarından yoksun olduklarını düşünmekte ve OSB olan birden fazla çocuk sahibi olmanın eşleri ile olan ilişkileri ve sosyal ağlarında yalnızlıklarını arttıracak dönüşümlere yol açtığını hissetmektedirler. Bunun yanında anneler güçlenmek için çeşitli stratejiler geliştirmektedirler. Bu stratejiler dini inançlar, çocuklarını birbirleri ile veya daha yoğun yetersizliği olan çocuklarla kıyaslamak ve çocuklarının küçük başarılarına odaklanmak şeklinde ortaya çıkmıştır.
Tartışma: Konu ile ilgili sınırlı çalışma olmakla birlikte OSB tanılı birden fazla çocuğu olan annelerin deneyimleri, yetersizliği olan birden fazla çocuğa sahip veya OSB tanılı bir çocuğu olan annelerin deneyimlerini araştıran çalışma bulguları ile benzerlik göstermektedir.
Sonuç ve Öneriler: OSB olan birden fazla çocuğa sahip olan anneler bir yandan yoğun bir sosyal izolasyon yaşayıp “annelik rolünü” yaşamlarının merkezine alırken bir yandan da kendilerini güçlü kılmak zorunda hissetmekte ve bunun için bazı stratejiler geliştirmektedirler. Araştırma bulgularına göre OSB olan birden fazla çocuğa sahip annelerin yaşamlarını kolaylaştıracak düzenlemeler gerektiği ve annelerin deneyimlerinin daha büyük katılımcı sayısı ile yapılacak çalışmalarla incelenmesi önerilmektedir.

Keywords

Anneler, deneyim, etiketlenme, güçlenme, otizm spektrum bozukluğu (OSB), yorumlayıcı fenomenolijik analiz (YFA)

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