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Parents' experiences from participating in an infant sibling study of autism spectrum disorder
Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Institutionen för psykologi.
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 universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Institutionen för psykologi. Uppsala universitet, Kollegiet för avancerade studier (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 (engelsk)Inngår i: Research in Autism Spectrum Disorders, ISSN 1750-9467, E-ISSN 1878-0237, Vol. 69, artikkel-id 101454Artikkel i tidsskrift (Fagfellevurdert) 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.

sted, utgiver, år, opplag, sider
Elsevier BV , 2020. Vol. 69, artikkel-id 101454
Emneord [en]
Autism spectrum disorder, Infant siblings, Early identification, Ethics, Risk factors
HSV kategori
Identifikatorer
URN: urn:nbn:se:uu:diva-400748DOI: 10.1016/j.rasd.2019.101454ISI: 000501403800001OAI: oai:DiVA.org:uu-400748DiVA, id: diva2:1382580
Forskningsfinansiär
Riksbankens Jubileumsfond, NHS14-1802:1Swedish Research Council, 2015-03670Tilgjengelig fra: 2020-01-03 Laget: 2020-01-03 Sist oppdatert: 2021-09-01bibliografisk kontrollert
Inngår i avhandling
1. Prediction in Typical and Atypical Development
Åpne denne publikasjonen i ny fane eller vindu >>Prediction in Typical and Atypical Development
2020 (engelsk)Doktoravhandling, med artikler (Annet vitenskapelig)
Abstract [en]

Forming predictions about what is going to happen next is a crucial ability that develops early in life. Theory and some empirical evidence suggest that predictive abilities may be impaired in Autism Spectrum Disorder (ASD). The overarching aim of this thesis is to investigate early measures of prediction in relation to concurrent and later outcomes in typical and atypical development, with a particular focus on ASD and related behavioral problems.

In Study I, we used motion capture technology to examine prospective motor control and its relationship to executive functions in typically developing 18-month-olds. Our findings showed that motor control is associated with executive functioning in infancy.

Study II investigated motor control in infants at low and elevated likelihood for ASD and examined how these measures relate to later development. We found group differences as well as similarities in motor control in 10-months-olds with and without a familial history of ASD. Early motor measures were related to general developmental level, but not ASD symptomatology in toddlerhood.

Using eye tracking, Study III examined how infants with later ASD and neurotypical infants form predictions about visual object motion. Our findings indicated that infants with later ASD were able to form predictions about object motion and adapt to simple changes in motion patterns, and that their performance did not differ from the performance of neurotypical infants.

In Study IV, we surveyed parents about their experiences during participation in an infant sibling study of ASD as a first step to understanding the benefits and risks associated with this type of research. Parents were generally positive about their experiences both from their own perspective as well as, the child’s perspective.

This thesis illustrates the potential of using advanced technology, such as motion tracking and eye tracking, to study and compare prediction in typical and atypical development. It points to the important role of prediction and motor control for child development, but fails to find a specific link to ASD.

sted, utgiver, år, opplag, sider
Uppsala: Acta Universitatis Upsaliensis, 2020. s. 81
Serie
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Social Sciences, ISSN 1652-9030 ; 179
Emneord
Prediction; Infancy; Developmental Psychology; Motor Development; Motor Control; Motion Tracking; Executive Functions; Embodied Cognition; Eye Tracking; Visual Motion; Predictive Coding; Autism Spectrum Disorder; Infant Siblings
HSV kategori
Forskningsprogram
Psykologi
Identifikatorer
urn:nbn:se:uu:diva-408579 (URN)978-91-513-0940-8 (ISBN)
Disputas
2020-06-02, Humanities Theatre, Campus Engelska parken, Thunbergsvägen 3, Uppsala, 10:15 (engelsk)
Opponent
Veileder
Tilgjengelig fra: 2020-05-12 Laget: 2020-04-08 Sist oppdatert: 2020-06-17

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