https://orcid.org/0000-0002-9346-0115
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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.
Acknowledgments
We would like to express our sincere gratitude to all participating parents for making this study possible. We would also like to thank the previous head of the Central Child Health Care Unit in Gothenburg, Thomas Arvidsson, and the previous head of the Psychologists for Maternal and Child Health Care, Antonia Reuter, for encouragement and support.
Ethics Approval And Informed Consent
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Prior to the beginning of data collection, the study was approved by the Regional Ethics Committee in Gothenburg, Sweden. Written informed consent was obtained from each individual participant included in the study.
Author Contributions
ÅN conceived the study; participated in its design, coordination, collection, and interpretation of data; and drafted the manuscript. MJ participated in the design of the study, the interpretation of data and drafting the manuscript. PL conceived the study and participated in its coordination. CG participated in the design of the study and reviewing the manuscript. GN conceived the study, participated in its design and the literature review. All authors contributed to data analysis, drafting and revising the article, gave final approval of the version to be published, and agree to be accountable for all aspects of the work.
Disclosure
The authors report no conflicts of interest in this work.