Understanding the needs of families of children who are deaf/hard of hearing with an autism spectrum disorder

Susan Wiley, Jareen Meinzen-Derr, Lisa Hunter, Rebekah Hudock, Dora Murphy, Katie Bentleyk, Tanishia Williams

Research output: Contribution to journalArticle

Abstract

Background: There is a significant lack of evidence guiding our understanding of the needs of families of children who are deaf/hard of hearing (Deaf/HH) with an autism spectrum disorder (ASD). Much of our current knowledge is founded in case report studies with very small numbers of children with the dual diagnosis. Purpose: The purpose of this study was to gain an understanding of the factors relating to caregiver stress and needs (i.e., supports and interventions) in families of children who are Deaf/HH with ASD. Research Design: Comparison groups of families of children who were Deaf/HH, families with a hearing child with ASD, and families of children who were Deaf/HH with ASD were administered standardized questionnaires of stress with brief qualitative questionnaires focusing on family-identified needs. Study Sample: Six families of children with the dual diagnosis, four families of children who were Deaf/HH, and three families of children with ASD. Data Collection and Analysis: Surveys included demographic and support questionnaires, the Parenting Stress Index (PSI), the Pediatric Hearing Impairment Caregiver Experience, and a qualitative questionnaire. Results: Families of children who were Deaf/HH with ASD had a higher median total stress score on the PSI as compared to families of children who were Deaf/HH only (58.5 versus 41.5, respectively; p 5 0.02) and higher Child Domain scores (60 versus 43, respectively; p 5 0.02), indicating higher levels of stress in families of children with the dual diagnosis. The families of children who were Deaf/HH with ASD reported similar levels of stress as families of children with ASD. Conclusions: Families of children who are Deaf/HH with an ASD experience stress and describe similar needs and priorities as families of hearing children with ASD. This suggests the needs related to having an autism spectrum disorder are of high priority in families of children with the dual diagnosis.

Original languageEnglish (US)
Pages (from-to)378-388
Number of pages11
JournalJournal of the American Academy of Audiology
Volume29
Issue number5
DOIs
StatePublished - May 1 2018

Fingerprint

Hearing
Dual (Psychiatry) Diagnosis
Autism Spectrum Disorder
Parenting
Caregivers
Hearing Loss

Keywords

  • Autism spectrum disorder
  • Dual diagnosis
  • Pediatric hearing loss

PubMed: MeSH publication types

  • Journal Article

Cite this

Understanding the needs of families of children who are deaf/hard of hearing with an autism spectrum disorder. / Wiley, Susan; Meinzen-Derr, Jareen; Hunter, Lisa; Hudock, Rebekah; Murphy, Dora; Bentleyk, Katie; Williams, Tanishia.

In: Journal of the American Academy of Audiology, Vol. 29, No. 5, 01.05.2018, p. 378-388.

Research output: Contribution to journalArticle

Wiley, Susan ; Meinzen-Derr, Jareen ; Hunter, Lisa ; Hudock, Rebekah ; Murphy, Dora ; Bentleyk, Katie ; Williams, Tanishia. / Understanding the needs of families of children who are deaf/hard of hearing with an autism spectrum disorder. In: Journal of the American Academy of Audiology. 2018 ; Vol. 29, No. 5. pp. 378-388.
@article{00188106c1bf4b99a80805be342e02f7,
title = "Understanding the needs of families of children who are deaf/hard of hearing with an autism spectrum disorder",
abstract = "Background: There is a significant lack of evidence guiding our understanding of the needs of families of children who are deaf/hard of hearing (Deaf/HH) with an autism spectrum disorder (ASD). Much of our current knowledge is founded in case report studies with very small numbers of children with the dual diagnosis. Purpose: The purpose of this study was to gain an understanding of the factors relating to caregiver stress and needs (i.e., supports and interventions) in families of children who are Deaf/HH with ASD. Research Design: Comparison groups of families of children who were Deaf/HH, families with a hearing child with ASD, and families of children who were Deaf/HH with ASD were administered standardized questionnaires of stress with brief qualitative questionnaires focusing on family-identified needs. Study Sample: Six families of children with the dual diagnosis, four families of children who were Deaf/HH, and three families of children with ASD. Data Collection and Analysis: Surveys included demographic and support questionnaires, the Parenting Stress Index (PSI), the Pediatric Hearing Impairment Caregiver Experience, and a qualitative questionnaire. Results: Families of children who were Deaf/HH with ASD had a higher median total stress score on the PSI as compared to families of children who were Deaf/HH only (58.5 versus 41.5, respectively; p 5 0.02) and higher Child Domain scores (60 versus 43, respectively; p 5 0.02), indicating higher levels of stress in families of children with the dual diagnosis. The families of children who were Deaf/HH with ASD reported similar levels of stress as families of children with ASD. Conclusions: Families of children who are Deaf/HH with an ASD experience stress and describe similar needs and priorities as families of hearing children with ASD. This suggests the needs related to having an autism spectrum disorder are of high priority in families of children with the dual diagnosis.",
keywords = "Autism spectrum disorder, Dual diagnosis, Pediatric hearing loss",
author = "Susan Wiley and Jareen Meinzen-Derr and Lisa Hunter and Rebekah Hudock and Dora Murphy and Katie Bentleyk and Tanishia Williams",
year = "2018",
month = "5",
day = "1",
doi = "10.3766/jaaa.16139",
language = "English (US)",
volume = "29",
pages = "378--388",
journal = "Journal of the American Academy of Audiology",
issn = "1050-0545",
publisher = "American Academy of Audiology",
number = "5",

}

TY - JOUR

T1 - Understanding the needs of families of children who are deaf/hard of hearing with an autism spectrum disorder

AU - Wiley, Susan

AU - Meinzen-Derr, Jareen

AU - Hunter, Lisa

AU - Hudock, Rebekah

AU - Murphy, Dora

AU - Bentleyk, Katie

AU - Williams, Tanishia

PY - 2018/5/1

Y1 - 2018/5/1

N2 - Background: There is a significant lack of evidence guiding our understanding of the needs of families of children who are deaf/hard of hearing (Deaf/HH) with an autism spectrum disorder (ASD). Much of our current knowledge is founded in case report studies with very small numbers of children with the dual diagnosis. Purpose: The purpose of this study was to gain an understanding of the factors relating to caregiver stress and needs (i.e., supports and interventions) in families of children who are Deaf/HH with ASD. Research Design: Comparison groups of families of children who were Deaf/HH, families with a hearing child with ASD, and families of children who were Deaf/HH with ASD were administered standardized questionnaires of stress with brief qualitative questionnaires focusing on family-identified needs. Study Sample: Six families of children with the dual diagnosis, four families of children who were Deaf/HH, and three families of children with ASD. Data Collection and Analysis: Surveys included demographic and support questionnaires, the Parenting Stress Index (PSI), the Pediatric Hearing Impairment Caregiver Experience, and a qualitative questionnaire. Results: Families of children who were Deaf/HH with ASD had a higher median total stress score on the PSI as compared to families of children who were Deaf/HH only (58.5 versus 41.5, respectively; p 5 0.02) and higher Child Domain scores (60 versus 43, respectively; p 5 0.02), indicating higher levels of stress in families of children with the dual diagnosis. The families of children who were Deaf/HH with ASD reported similar levels of stress as families of children with ASD. Conclusions: Families of children who are Deaf/HH with an ASD experience stress and describe similar needs and priorities as families of hearing children with ASD. This suggests the needs related to having an autism spectrum disorder are of high priority in families of children with the dual diagnosis.

AB - Background: There is a significant lack of evidence guiding our understanding of the needs of families of children who are deaf/hard of hearing (Deaf/HH) with an autism spectrum disorder (ASD). Much of our current knowledge is founded in case report studies with very small numbers of children with the dual diagnosis. Purpose: The purpose of this study was to gain an understanding of the factors relating to caregiver stress and needs (i.e., supports and interventions) in families of children who are Deaf/HH with ASD. Research Design: Comparison groups of families of children who were Deaf/HH, families with a hearing child with ASD, and families of children who were Deaf/HH with ASD were administered standardized questionnaires of stress with brief qualitative questionnaires focusing on family-identified needs. Study Sample: Six families of children with the dual diagnosis, four families of children who were Deaf/HH, and three families of children with ASD. Data Collection and Analysis: Surveys included demographic and support questionnaires, the Parenting Stress Index (PSI), the Pediatric Hearing Impairment Caregiver Experience, and a qualitative questionnaire. Results: Families of children who were Deaf/HH with ASD had a higher median total stress score on the PSI as compared to families of children who were Deaf/HH only (58.5 versus 41.5, respectively; p 5 0.02) and higher Child Domain scores (60 versus 43, respectively; p 5 0.02), indicating higher levels of stress in families of children with the dual diagnosis. The families of children who were Deaf/HH with ASD reported similar levels of stress as families of children with ASD. Conclusions: Families of children who are Deaf/HH with an ASD experience stress and describe similar needs and priorities as families of hearing children with ASD. This suggests the needs related to having an autism spectrum disorder are of high priority in families of children with the dual diagnosis.

KW - Autism spectrum disorder

KW - Dual diagnosis

KW - Pediatric hearing loss

UR - http://www.scopus.com/inward/record.url?scp=85046342681&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85046342681&partnerID=8YFLogxK

U2 - 10.3766/jaaa.16139

DO - 10.3766/jaaa.16139

M3 - Article

VL - 29

SP - 378

EP - 388

JO - Journal of the American Academy of Audiology

JF - Journal of the American Academy of Audiology

SN - 1050-0545

IS - 5

ER -