Digitala Vetenskapliga Arkivet

Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
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
Elsevier BV , 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: 2021-09-01Bibliographically approved
In thesis
1. Prediction in Typical and Atypical Development
Open this publication in new window or tab >>Prediction in Typical and Atypical Development
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
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.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2020. p. 81
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Social Sciences, ISSN 1652-9030 ; 179
Keywords
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
National Category
Psychology (excluding Applied Psychology)
Research subject
Psychology
Identifiers
urn:nbn:se:uu:diva-408579 (URN)978-91-513-0940-8 (ISBN)
Public defence
2020-06-02, Humanities Theatre, Campus Engelska parken, Thunbergsvägen 3, Uppsala, 10:15 (English)
Opponent
Supervisors
Available from: 2020-05-12 Created: 2020-04-08 Last updated: 2020-06-17

Open Access in DiVA

fulltext(372 kB)502 downloads
File information
File name FULLTEXT01.pdfFile size 372 kBChecksum SHA-512
67a8bb64e2b4b9aaebf8f8e29ec5a24340e5bfe9094af69de9676ac91c957cb4e4ae4ded604824c73c6de696c513a864d6a7e11a6fde680a826c6917818c6f87
Type fulltextMimetype application/pdf

Other links

Publisher's full text

Search in DiVA

By author/editor
Achermann, SheilaBolte, SvenFalck-Ytter, Terje
By organisation
Department of PsychologySwedish Collegium for Advanced Study (SCAS)
In the same journal
Research in Autism Spectrum Disorders
Psychology (excluding Applied Psychology)Psychiatry

Search outside of DiVA

GoogleGoogle Scholar
Total: 506 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

doi
urn-nbn

Altmetric score

doi
urn-nbn
Total: 738 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf