Understanding the Family Impact of Autism Spectrum Disorder in a Racially and Ethnically Diverse Sample

Findings from the National Survey of Children with Special Health Care Needs

Teal Wisniewski Benevides, Jiwon Lee, Nonyé A.O. Nwosu, Jessica Franks

Research output: Contribution to journalArticle

Abstract

Objectives Caregivers of children with autism spectrum disorder (ASD) experience stress at greater rates than caregivers of other children with developmental conditions. Little is known about how families from different racial and ethnic backgrounds report family impact beyond individual stressors associated with caregiving. This paper aims to examine differences in family impact variables among caregivers of ASD children from different racial/ethnic backgrounds. Methods Using data from the 2005–2006 and 2009–2010 National Survey of Children with Special Health Care Needs, this retrospective, cross-sectional study examined family impact among caregivers of children with ASD. Family impact was defined as financial impact, time spent caregiving, and work impact variables and evaluated in five racial/ethnicity groups: white, non-Hispanic; any race, English-speaking Hispanic; any race, Spanish-speaking Hispanic; black, non-Hispanic; and other race, non-Hispanic respondents (n = 5115). Multivariate logistic regression was used to analyze the association of race and ethnicity with family impact variables while controlling for child and family covariates. Results Significant differences were found between race/ethnicity groups of caregivers on financial spending of more than $500 per year on care and providing more than 11 h a week on direct child care. No significant differences were observed in job impact variables between race/ethnicity groups. Conclusions for Practice Racial/ethnic differences exist in providing and spending more on direct care, but they do not necessarily represent disparities. More research is needed to fully understand if family impact is affected by cultural differences in care provided for children with ASD.

Original languageEnglish (US)
JournalMaternal and child health journal
DOIs
StateAccepted/In press - Jan 1 2019

Fingerprint

Delivery of Health Care
Caregivers
Child Care
Hispanic Americans
Surveys and Questionnaires
Autism Spectrum Disorder
Cross-Sectional Studies
Logistic Models
Research

Keywords

  • Autism spectrum disorder
  • Family caregiver
  • Racial/ethnic health disparities

ASJC Scopus subject areas

  • Epidemiology
  • Pediatrics, Perinatology, and Child Health
  • Obstetrics and Gynecology
  • Public Health, Environmental and Occupational Health

Cite this

@article{ca19fcf0eb5d4360926b3a446d30693f,
title = "Understanding the Family Impact of Autism Spectrum Disorder in a Racially and Ethnically Diverse Sample: Findings from the National Survey of Children with Special Health Care Needs",
abstract = "Objectives Caregivers of children with autism spectrum disorder (ASD) experience stress at greater rates than caregivers of other children with developmental conditions. Little is known about how families from different racial and ethnic backgrounds report family impact beyond individual stressors associated with caregiving. This paper aims to examine differences in family impact variables among caregivers of ASD children from different racial/ethnic backgrounds. Methods Using data from the 2005–2006 and 2009–2010 National Survey of Children with Special Health Care Needs, this retrospective, cross-sectional study examined family impact among caregivers of children with ASD. Family impact was defined as financial impact, time spent caregiving, and work impact variables and evaluated in five racial/ethnicity groups: white, non-Hispanic; any race, English-speaking Hispanic; any race, Spanish-speaking Hispanic; black, non-Hispanic; and other race, non-Hispanic respondents (n = 5115). Multivariate logistic regression was used to analyze the association of race and ethnicity with family impact variables while controlling for child and family covariates. Results Significant differences were found between race/ethnicity groups of caregivers on financial spending of more than $500 per year on care and providing more than 11 h a week on direct child care. No significant differences were observed in job impact variables between race/ethnicity groups. Conclusions for Practice Racial/ethnic differences exist in providing and spending more on direct care, but they do not necessarily represent disparities. More research is needed to fully understand if family impact is affected by cultural differences in care provided for children with ASD.",
keywords = "Autism spectrum disorder, Family caregiver, Racial/ethnic health disparities",
author = "Benevides, {Teal Wisniewski} and Jiwon Lee and Nwosu, {Nony{\'e} A.O.} and Jessica Franks",
year = "2019",
month = "1",
day = "1",
doi = "10.1007/s10995-018-02724-x",
language = "English (US)",
journal = "Maternal and Child Health Journal",
issn = "1092-7875",
publisher = "Springer GmbH & Co, Auslieferungs-Gesellschaf",

}

TY - JOUR

T1 - Understanding the Family Impact of Autism Spectrum Disorder in a Racially and Ethnically Diverse Sample

T2 - Findings from the National Survey of Children with Special Health Care Needs

AU - Benevides, Teal Wisniewski

AU - Lee, Jiwon

AU - Nwosu, Nonyé A.O.

AU - Franks, Jessica

PY - 2019/1/1

Y1 - 2019/1/1

N2 - Objectives Caregivers of children with autism spectrum disorder (ASD) experience stress at greater rates than caregivers of other children with developmental conditions. Little is known about how families from different racial and ethnic backgrounds report family impact beyond individual stressors associated with caregiving. This paper aims to examine differences in family impact variables among caregivers of ASD children from different racial/ethnic backgrounds. Methods Using data from the 2005–2006 and 2009–2010 National Survey of Children with Special Health Care Needs, this retrospective, cross-sectional study examined family impact among caregivers of children with ASD. Family impact was defined as financial impact, time spent caregiving, and work impact variables and evaluated in five racial/ethnicity groups: white, non-Hispanic; any race, English-speaking Hispanic; any race, Spanish-speaking Hispanic; black, non-Hispanic; and other race, non-Hispanic respondents (n = 5115). Multivariate logistic regression was used to analyze the association of race and ethnicity with family impact variables while controlling for child and family covariates. Results Significant differences were found between race/ethnicity groups of caregivers on financial spending of more than $500 per year on care and providing more than 11 h a week on direct child care. No significant differences were observed in job impact variables between race/ethnicity groups. Conclusions for Practice Racial/ethnic differences exist in providing and spending more on direct care, but they do not necessarily represent disparities. More research is needed to fully understand if family impact is affected by cultural differences in care provided for children with ASD.

AB - Objectives Caregivers of children with autism spectrum disorder (ASD) experience stress at greater rates than caregivers of other children with developmental conditions. Little is known about how families from different racial and ethnic backgrounds report family impact beyond individual stressors associated with caregiving. This paper aims to examine differences in family impact variables among caregivers of ASD children from different racial/ethnic backgrounds. Methods Using data from the 2005–2006 and 2009–2010 National Survey of Children with Special Health Care Needs, this retrospective, cross-sectional study examined family impact among caregivers of children with ASD. Family impact was defined as financial impact, time spent caregiving, and work impact variables and evaluated in five racial/ethnicity groups: white, non-Hispanic; any race, English-speaking Hispanic; any race, Spanish-speaking Hispanic; black, non-Hispanic; and other race, non-Hispanic respondents (n = 5115). Multivariate logistic regression was used to analyze the association of race and ethnicity with family impact variables while controlling for child and family covariates. Results Significant differences were found between race/ethnicity groups of caregivers on financial spending of more than $500 per year on care and providing more than 11 h a week on direct child care. No significant differences were observed in job impact variables between race/ethnicity groups. Conclusions for Practice Racial/ethnic differences exist in providing and spending more on direct care, but they do not necessarily represent disparities. More research is needed to fully understand if family impact is affected by cultural differences in care provided for children with ASD.

KW - Autism spectrum disorder

KW - Family caregiver

KW - Racial/ethnic health disparities

UR - http://www.scopus.com/inward/record.url?scp=85060616256&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85060616256&partnerID=8YFLogxK

U2 - 10.1007/s10995-018-02724-x

DO - 10.1007/s10995-018-02724-x

M3 - Article

JO - Maternal and Child Health Journal

JF - Maternal and Child Health Journal

SN - 1092-7875

ER -