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Experiences Of Immigrant Parents In Sweden Participating In A Community Assessment And Intervention Program For Preschool Children With Autism

Journal article
Authors A. Nilses
M. Jingrot
Petra Linnsand
Christopher Gillberg
Gudrun Nygren
Published in Neuropsychiatric Disease and Treatment
Volume 15
Pages 3397-3410
Publication year 2019
Published at Gillberg Neuropsychiatry Centre
Pages 3397-3410
Language en
Links dx.doi.org/10.2147/ndt.S221908
Keywords ASD, autism spectrum disorder, early intervention, migrate, parental, experience, qualitative, spectrum disorders, developmental-disabilities, young-children, united-states, prevalence, diagnosis, needs, population, challenges, families, Neurosciences & Neurology, Psychiatry
Subject categories Neurosciences

Abstract

Background: Barriers inherent in service systems for autism can hinder parents from getting help for their children, and this is probably especially true for immigrant parents. In order to provide accessible assessment and interventions for preschool children with autism, a multidisciplinary team was established in one district of a Swedish city, with a majority population of immigrants. Aim: The aim of the present study was to gain knowledge of the parents' experiences of participating in the community assessment and intervention program. Methods and procedures: A qualitative study with semi-structured interviews was conducted with parents of 11 children aged 3-5, who had been diagnosed with autism and participated in the community intervention program for at least 1 year. The interviews were recorded and transcribed verbatim, and data were analyzed following a phenomenological hermeneutical method. Results: The overall meaning of the parents' narratives was interpreted as "A new way of understanding my child made life more hopeful and more challenging than before". Their experience was interpreted as a process, captured in the three main themes: "An overwhelming diagnosis", "Cooperating with the team", and "Growing as a parent". Conclusion: As lacking knowledge of available resources and support seems to be an important barrier to access services, the results underscore the importance of providing individually tailored services including comprehensive societal support to immigrant families with young children suffering from autism. The study also highlights the importance of addressing the parents' previous awareness and knowledge of autism early in the assessment process, as well as continually involving parents in the intervention program, and this may enhance parental growth.

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