2023 Early Hearing Detection & Intervention Conference

March 5-7, 2023 • Cincinnati, OH

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4/15/2014 | 11:30 AM - 12:00 PM | Parental Stress in Children who are Deaf/Hard of Hearing with an Autism Spectrum Disorder | Grand Ballroom 3 | 7

Parental Stress in Children who are Deaf/Hard of Hearing with an Autism Spectrum Disorder

Background: Despite high rates of children who are deaf/hard of hearing (deaf/HH) having an autism spectrum disorder (~7%), there is limited understanding of the needs of these children. The experience of stress in families of children with the dual diagnosis is unknown. Objectives: This pilot study sought to understand factors relating to caregiver stress in families of deaf/HH children with a co-existing autism spectrum disorder (ASD). Methods: Families of children who were deaf/HH with and without an ASD were identified through a clinical database. Families completed questionnaires focusing on stress, including the Parenting Stress Index (PSI) and the Pediatric Hearing Impairment Caregiver Experience (PHICE). The PHICE measures on a scale of 1-8 (low to high stress) domains in the areas of communication, social, education, emotional, equipment, financial, healthcare, and support. An open-ended qualitative questionnaire was also administered. Results: Information from 6 families of children with the dual diagnosis and 4 families of children who were deaf/HH were analyzed. On the PSI, the dual group had a higher mean total stress index (58.5 vs 41.5, p=0.02) as compared to the deaf/HH only group and higher Child Domain scores (43 vs 60; p=0.02). On the PHICE, families of children with the dual diagnosis had higher median scores than families of children who were deaf/HH (179.5 vs 150.5, p=0.08). In the dual diagnosis group reporting high levels of stress, 50% noted high levels of stress about their child’s future, 33% indicated worry about not doing enough for the child and not attending to other family needs, and 33% indicated high levels of stress related to childcare. Conclusions: Families of children with the dual diagnosis report higher levels of overall stress as compared to families of children who are deaf/hh, often related to their child’s future.

Describe differences in stress experienced by families of children who are deaf/hh with and without an autism spectrum disorder
Identify strategies to support families with a child who is deaf/hh with an autism spectrum disorder

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Presenters/Authors

Susan Wiley (Primary Presenter), Cincinnati Children's Hospital Medical Center, susan.wiley@cchmc.org;
Dr. Susan Wiley is a developmental pediatrician with extensive expertise in children who are deaf/hard of hearing. She has many years of experience serving children with multiple disabilities. Dr Wiley provides leadership and guidance to the National American Academy of Pediatrics, the Ohio Department of Health Early Hearing Detection and Intervention Program, the Ohio Center for Deaf-Blind Education, and the Outreach Center for Deafness and Blindness in the Ohio Center for Low Incidence.

ASHA DISCLOSURE:

Financial -
No relevant financial relationship exist.

Nonfinancial -
No relevant nonfinancial relationship exist.

Jareen Meinzen-Derr (Author), Cincinnati Children's Hospital Medical Center, jareen.meinzen-derr@cchmc.org;
Dr. Meinzen-Derr is quantitative epidemiologist at the Cincinnati Children's Hospital Medical Center. She has focused her research on outcomes of children who are deaf or hard of hearing, and specifically those who have additional developmental disabilities.