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'If He Has it, We Know What to Do': Parent Perspectives on Familial Risk for Autism Spectrum Disorder
- Source :
- J Pediatr Psychol
- Publication Year :
- 2019
-
Abstract
- ObjectivePredictive testing for familial disorders can guide healthcare and reproductive decisions. Familial disorders with onset in childhood (e.g., autism spectrum disorder [ASD]) are promising targets for presymptomatic prediction; however, little is known about parent perceptions of risk to their children in the presymptomatic period. The current study examined risk perceptions in parents of infants at high familial risk for ASD enrolled in a longitudinal study of brain and behavior development.MethodsSemistructured interviews were conducted with 37 parents of high-risk infants during the presymptomatic window (3–15 months) that precedes an ASD diagnosis. Infants were identified as high familial risk due to having an older sibling with ASD. Parent interview responses were coded and interpreted to distill emerging themes.ResultsThe majority of parents were aware of the increased risk of ASD for their infants, and risk perceptions were influenced by comparisons to their older child with ASD. Parents reported a variety of negative emotions in response to perceived risk, including worry, fear, and sadness, and described impacts of perceived risk on their behavior: increased vigilance to emerging symptoms, altered reproductive and healthcare decisions, and seeking ongoing assessment through research.ConclusionsParents of children at high familial risk for childhood-onset disorders like ASD face a period of challenging uncertainty during early development. In anticipation of a future in which presymptomatic testing for ASD is made available, it is important to understand how parents react to and cope with the elevated—but still highly uncertain—risk conveyed by family history.
- Subjects :
- Male
Parents
Longitudinal study
Health Knowledge, Attitudes, Practice
Featured Article and JPP Student Journal Club
genetic structures
Autism Spectrum Disorder
media_common.quotation_subject
Emotions
behavioral disciplines and activities
Interviews as Topic
03 medical and health sciences
0302 clinical medicine
Risk Factors
mental disorders
Developmental and Educational Psychology
Medicine
Presymptomatic Testing
Humans
0501 psychology and cognitive sciences
Genetic Predisposition to Disease
Longitudinal Studies
Family history
Predictive testing
media_common
business.industry
05 social sciences
Infant
medicine.disease
Risk perception
Sadness
Autism spectrum disorder
Pediatrics, Perinatology and Child Health
Female
Worry
business
030217 neurology & neurosurgery
050104 developmental & child psychology
Clinical psychology
Subjects
Details
- ISSN :
- 1465735X
- Volume :
- 45
- Issue :
- 2
- Database :
- OpenAIRE
- Journal :
- Journal of pediatric psychology
- Accession number :
- edsair.doi.dedup.....869792ab8e5d0d42feeb5843829f1200