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Parents' experiences from participating in an infant sibling study of autism spectrum disorder
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
Karolinska Inst & Reg Stockholm, Dept Womens & Childrens Hlth, Ctr Psychiat Res, Karolinska Inst KIND,Ctr Neurodev Disorders, Stockholm, Sweden;Curtin Univ, Sch Occupat Therapy Social Work & Speech Pathol, Essential Partner Autism CRC, Curtin Autism Res Grp, Perth, WA, Australia.ORCID iD: 0000-0002-4579-4970
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology. Uppsala University, Swedish Collegium for Advanced Study (SCAS). Karolinska Inst & Reg Stockholm, Dept Womens & Childrens Hlth, Ctr Psychiat Res, Karolinska Inst KIND,Ctr Neurodev Disorders, Stockholm, Sweden.ORCID iD: 0000-0001-9714-0197
2020 (English)In: Research in Autism Spectrum Disorders, ISSN 1750-9467, E-ISSN 1878-0237, Vol. 69, article id 101454Article in journal (Refereed) Published
Abstract [en]

Background:

Prospective longitudinal studies of infant siblings of children with autism spectrum disorder (ASD) play an important role in advancing our knowledge about early developmental pathways in ASD. Despite this clear benefit, currently little is known about potential risks or disadvantages for participating families. As a first step in addressing this issue, we asked parents about their experiences from participating in an infant sibling study.

Method:

Eighty-eight families responded to a questionnaire examining parents' experiences from participating in an infant sibling study. The questions assessed parents' satisfaction with the study, the child's perceived satisfaction, and the parents' motivation for participating. The study included parents of two groups, (1) infants with an older sibling diagnosed with ASD (HR, high risk, n = 43) and (2) infants with no familial history of ASD (LR, low risk, n = 21).

Results:

The results indicated that parents are generally positive about study participation and few disadvantages were reported. This pattern was mirrored when splitting parents' responses into the two groups. There was no indication for group differences between parents of infants at high risk and low risk for ASD.

Conclusion:

Our findings present a first step into understanding parents' experiences from participating in an infant sibling study. Most parents were satisfied with participation in the study and only few disadvantages were reported. Our results have implications for ethical discussions about benefits and risks regarding infant sibling studies in various fields.

Place, publisher, year, edition, pages
2020. Vol. 69, article id 101454
Keywords [en]
Autism spectrum disorder, Infant siblings, Early identification, Ethics, Risk factors
National Category
Psychology (excluding Applied Psychology) Psychiatry
Identifiers
URN: urn:nbn:se:uu:diva-400748DOI: 10.1016/j.rasd.2019.101454ISI: 000501403800001OAI: oai:DiVA.org:uu-400748DiVA, id: diva2:1382580
Funder
Riksbankens Jubileumsfond, NHS14-1802:1Swedish Research Council, 2015-03670Available from: 2020-01-03 Created: 2020-01-03 Last updated: 2020-01-03Bibliographically approved

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Achermann, SheilaBolte, SvenFalck-Ytter, Terje
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