Neuropsychiatric Disease and Treatment (Dec 2019)
Experiences Of Immigrant Parents In Sweden Participating In A Community Assessment And Intervention Program For Preschool Children With Autism
Abstract
Åsa Nilses,1 Marianne Jingrot,2 Petra Linnsand,3,4 Christopher Gillberg,3 Gudrun Nygren3,4 1Center for Progress in Children’s Mental Health, Region Vastra Gotaland, Gothenburg, Sweden; 2Research and Development Primary Health Care, Region Vastra Gotaland, Gothenburg, Sweden; 3Gillberg Neuropsychiatry Centre, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden; 4Child and Adolescent Specialist Centre, Angered Hospital, Region Vastra Gotaland, Angered, SwedenCorrespondence: Åsa NilsesCenter for Progress in Children’s Mental Health, Kungsgatan 12, Gothenburg 411 19, SwedenTel +46 722 245311Email [email protected]: 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.Keywords: ASD, autism spectrum disorder, early intervention, migrate, parental experience, qualitative
