Measuring the involvement in family life of children with autism spectrum disorder

A DBPNet study

Justin Schwartz, Noelle Huntington, Marisa Toomey, Michele C. Laverdiere, Katherine Bevans, Nathan Blum, Carolyn Bridgemohan

Research output: Contribution to journalArticle

Abstract

Background: Children with Autism Spectrum Disorder (ASD) have social and communication deficits that impair their involvement in family life. No measures of child involvement in the family have been validated for the ASD population. Aim: To evaluate the validity of a measure of Family Involvement (FI) of children ages 5–12 with ASD. Method: Parents of children ages 5–12 with ASD (n = 114) completed FI items from the PROMIS® pediatric Family Relationships item bank in computerized adaptive testing (CAT) format, as well as measures of ASD symptom burden, parenting stress, and parental depression. Medical record review provided child intelligence or developmental quotient. A reference sample (n = 236) closely matching the ASD sample in age and gender was created from the national standardization sample, and underwent a simulated CAT. Results: The CAT precisely and efficiently measured parent-reported FI of children with ASD. Average FI scores were lower among children with ASD (M = 46.3, SD = 7.1) than children in the reference sample (M = 52.5, SD = 9.1). A “dose response” decrease in FI was observed as ASD severity increased. Increased parenting stress was associated with lower FI. No relationship between FI and child IQ was found. Conclusion: The FI items captured FI among children ages 5–12 with ASD with acceptable precision. Reduced FI among children with ASD, particularly those with higher symptom severity, suggests validity of the items in this population.

Original languageEnglish (US)
Pages (from-to)18-27
Number of pages10
JournalResearch in Developmental Disabilities
Volume83
DOIs
StatePublished - Dec 1 2018

Fingerprint

Parenting
Autism Spectrum Disorder
Family Relations
Intelligence
Population
Medical Records
Parents
Communication
Depression
Pediatrics

Keywords

  • ASD
  • Autism spectrum disorder
  • Family involvement
  • Patient reported outcomes measure
  • Quality of life

ASJC Scopus subject areas

  • Developmental and Educational Psychology
  • Clinical Psychology

Cite this

Measuring the involvement in family life of children with autism spectrum disorder : A DBPNet study. / Schwartz, Justin; Huntington, Noelle; Toomey, Marisa; Laverdiere, Michele C.; Bevans, Katherine; Blum, Nathan; Bridgemohan, Carolyn.

In: Research in Developmental Disabilities, Vol. 83, 01.12.2018, p. 18-27.

Research output: Contribution to journalArticle

Schwartz, Justin ; Huntington, Noelle ; Toomey, Marisa ; Laverdiere, Michele C. ; Bevans, Katherine ; Blum, Nathan ; Bridgemohan, Carolyn. / Measuring the involvement in family life of children with autism spectrum disorder : A DBPNet study. In: Research in Developmental Disabilities. 2018 ; Vol. 83. pp. 18-27.
@article{235007f249e149d6a0bb45359464c82c,
title = "Measuring the involvement in family life of children with autism spectrum disorder: A DBPNet study",
abstract = "Background: Children with Autism Spectrum Disorder (ASD) have social and communication deficits that impair their involvement in family life. No measures of child involvement in the family have been validated for the ASD population. Aim: To evaluate the validity of a measure of Family Involvement (FI) of children ages 5–12 with ASD. Method: Parents of children ages 5–12 with ASD (n = 114) completed FI items from the PROMIS{\circledR} pediatric Family Relationships item bank in computerized adaptive testing (CAT) format, as well as measures of ASD symptom burden, parenting stress, and parental depression. Medical record review provided child intelligence or developmental quotient. A reference sample (n = 236) closely matching the ASD sample in age and gender was created from the national standardization sample, and underwent a simulated CAT. Results: The CAT precisely and efficiently measured parent-reported FI of children with ASD. Average FI scores were lower among children with ASD (M = 46.3, SD = 7.1) than children in the reference sample (M = 52.5, SD = 9.1). A “dose response” decrease in FI was observed as ASD severity increased. Increased parenting stress was associated with lower FI. No relationship between FI and child IQ was found. Conclusion: The FI items captured FI among children ages 5–12 with ASD with acceptable precision. Reduced FI among children with ASD, particularly those with higher symptom severity, suggests validity of the items in this population.",
keywords = "ASD, Autism spectrum disorder, Family involvement, Patient reported outcomes measure, Quality of life",
author = "Justin Schwartz and Noelle Huntington and Marisa Toomey and Laverdiere, {Michele C.} and Katherine Bevans and Nathan Blum and Carolyn Bridgemohan",
year = "2018",
month = "12",
day = "1",
doi = "10.1016/j.ridd.2018.07.012",
language = "English (US)",
volume = "83",
pages = "18--27",
journal = "Research in Developmental Disabilities",
issn = "0891-4222",
publisher = "Elsevier Inc.",

}

TY - JOUR

T1 - Measuring the involvement in family life of children with autism spectrum disorder

T2 - A DBPNet study

AU - Schwartz, Justin

AU - Huntington, Noelle

AU - Toomey, Marisa

AU - Laverdiere, Michele C.

AU - Bevans, Katherine

AU - Blum, Nathan

AU - Bridgemohan, Carolyn

PY - 2018/12/1

Y1 - 2018/12/1

N2 - Background: Children with Autism Spectrum Disorder (ASD) have social and communication deficits that impair their involvement in family life. No measures of child involvement in the family have been validated for the ASD population. Aim: To evaluate the validity of a measure of Family Involvement (FI) of children ages 5–12 with ASD. Method: Parents of children ages 5–12 with ASD (n = 114) completed FI items from the PROMIS® pediatric Family Relationships item bank in computerized adaptive testing (CAT) format, as well as measures of ASD symptom burden, parenting stress, and parental depression. Medical record review provided child intelligence or developmental quotient. A reference sample (n = 236) closely matching the ASD sample in age and gender was created from the national standardization sample, and underwent a simulated CAT. Results: The CAT precisely and efficiently measured parent-reported FI of children with ASD. Average FI scores were lower among children with ASD (M = 46.3, SD = 7.1) than children in the reference sample (M = 52.5, SD = 9.1). A “dose response” decrease in FI was observed as ASD severity increased. Increased parenting stress was associated with lower FI. No relationship between FI and child IQ was found. Conclusion: The FI items captured FI among children ages 5–12 with ASD with acceptable precision. Reduced FI among children with ASD, particularly those with higher symptom severity, suggests validity of the items in this population.

AB - Background: Children with Autism Spectrum Disorder (ASD) have social and communication deficits that impair their involvement in family life. No measures of child involvement in the family have been validated for the ASD population. Aim: To evaluate the validity of a measure of Family Involvement (FI) of children ages 5–12 with ASD. Method: Parents of children ages 5–12 with ASD (n = 114) completed FI items from the PROMIS® pediatric Family Relationships item bank in computerized adaptive testing (CAT) format, as well as measures of ASD symptom burden, parenting stress, and parental depression. Medical record review provided child intelligence or developmental quotient. A reference sample (n = 236) closely matching the ASD sample in age and gender was created from the national standardization sample, and underwent a simulated CAT. Results: The CAT precisely and efficiently measured parent-reported FI of children with ASD. Average FI scores were lower among children with ASD (M = 46.3, SD = 7.1) than children in the reference sample (M = 52.5, SD = 9.1). A “dose response” decrease in FI was observed as ASD severity increased. Increased parenting stress was associated with lower FI. No relationship between FI and child IQ was found. Conclusion: The FI items captured FI among children ages 5–12 with ASD with acceptable precision. Reduced FI among children with ASD, particularly those with higher symptom severity, suggests validity of the items in this population.

KW - ASD

KW - Autism spectrum disorder

KW - Family involvement

KW - Patient reported outcomes measure

KW - Quality of life

UR - http://www.scopus.com/inward/record.url?scp=85050974796&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85050974796&partnerID=8YFLogxK

U2 - 10.1016/j.ridd.2018.07.012

DO - 10.1016/j.ridd.2018.07.012

M3 - Article

VL - 83

SP - 18

EP - 27

JO - Research in Developmental Disabilities

JF - Research in Developmental Disabilities

SN - 0891-4222

ER -