You are being asked to be in this research study because you have a child who is deaf/hard of hearing who has been involved in the Early Hearing Detection Intervention (EHDI) system in your area within the past 10 years.
I agree to participate in this study.
I am not interested in participating in this study.
How old is your child currently?
* must provide value
0-6 months 7-12 months 13-18 months 19-24 months 25- 30 months 31-36 months 4 years old 5 years old 6 years old 7 years old 8 years old 9 years old 10 years old 11 or more years old
What is your relationship to your child?
mother father foster parent grand parent legal guardian other
What state did you and your child live in during the time that they received hearing related early intervention?
Was your child's hearing screened at the time of their delivery?
Yes No we declined a hearing screening No my child was delivered at home Unsure
What were the results of your child's hearing screening?
Pass in both ears Pass in the right ear, referred in the left ear Pass in the left ear, referred in the right ear Referred in both ears Passed a follow-up screen Unsure
How were you first told about the results of your baby's hearing screening?
The staff at the hospital where my baby's hearing was screened told me before I went home. The doctor told me before I went home from the hospital. I received a card or note before I went home from the hospital. The staff at the hospital where my baby's hearing was screened told me after I went home. The doctor told me after I went home from the hospital. I got a letter with the results mailed to my home. I was never told the results. Other: _______________________
When you learned about the results of your baby's hearing screening test, how did you feel?
Not at all anxious or worried Somewhat anxious or worried Anxious or worried Very anxious or worried
Were there any barriers you encountered in accessing hearing screening for your child?
Yes
No
If Yes, please explain what barriers you encountered accessing hearing screening for your child:
Has your child been diagnosed with reduced hearing?
Yes No - still pending diagnostic results No - hearing loss was ruled out
How old was your child when they were diagnosed with reduced hearing? Please report age in months.
What type of hearing loss does your child have?
Sensorineural Conductive Mixed Unsure
What degree of hearing loss does your child have? Please indicate degree of hearing in their better hearing ear if a difference between degree of hearing loss in each ear exists
Slight Mild Moderate Moderately-severe Severe Profound
In which ear (s) does your child have reduced hearing?
Right ear only Left ear only Both ears
How was your child's reduced hearing diagnosed?
Natural sleep ABR (sleeping hearing test done in office) Sedated sleep ABR (sleeping hearing test done under anesthesia) VRA (hearing test done in the sound booth where the child sees toys or videos when they turn for the sounds) CPA (hearing test done in the sound booth where the child plays a game every time they hear the sounds, like putting a ball in a bucket) Behavioral (hearing test done in the sound booth where the child raises their hand each time they hear the sound)
How many appointments were required to confirm your child's hearing diagnosis?
1 2 3 More than 3 We have been unable to reliably determine whether my child has hearing differences
Does your child tolerate hearing evaluations using headphones/ear inserts during their audiology testing?
Yes No Sometimes Headphones have never been attempted
Is your child's audiologist typically able to obtain a full audiogram (testing done in the sound booth) in a single visit?
Yes No Sometimes Unsure
Is your child's audiologist able to obtain tympanometry (ear drum check) during the majority of their visits, when attempted?
Yes No Sometimes Unsure
Is your child's audiologist able to obtain OAEs (hearing screen to measure cochlear function?) when attempted during the majority of visits/attempts?
Yes No Sometimes Unsure Has not been tested
Is your child's audiologist able to obtain acoustic reflexes (check of response of middle ear muscles to presence of a loud sound) when attempted during your child's visits?
Yes No Sometimes Unsure Has not been tested
Were there any barriers that you encountered in receiving your child's hearing diagnosis?
Yes
No
Please explain any barriers you encountered in receiving your child's hearing diagnosis.
Does your child use amplification? (e.g., hearing aids, bone conduction devices, cochlear implants)
Yes - hearing aid (s) Yes - bone conduction device (s) Yes - cochlear implant (s) Yes- hearing aid and cochlear implant No
At what age was your child fit with amplification? Please report age in months.
Approximately how long after determination of your child's hearing loss was your child fit with amplification? Please specify unit of time such as days, weeks, or months. (e.g., 3 weeks)
How often does your child wear their hearing amplification devices?
Never (< 25%) Rarely (25-50%) Part time (51-75%) Most of the time (>75%) Full time (all waking hours)
Please indicate any barriers you have encountered establishing full-time hearing device use: ____________
Have you received support from your child's early intervention providers regarding hearing device use?
Yes
No
If you have received support with hearing device use, what type of support have you received:
resources (handouts, websites, materials) coaching from an EI provider counseling from my child's audiologist behavioral tips information about hearing device retention materials (e.g., pilot caps, toupee tape, clips) other:
If you endorsed "other" support, please describe the type of hearing device use support you received
When your child was diagnosed with reduced hearing were you referred to early intervention specifically for children who are deaf/hard of hearing?
Yes
No
Who referred you to early intervention?
Audiologist Primary Care Other
Was your child referred for early intervention to support development in areas unrelated to their reduced hearing? (e.g., occupational therapy, physical therapy, behavioral therapy, mental health support)
Yes
No
Does/did your child receive hearing related early intervention provided by your state? For example, are they part of an early intervention program specifically for children who are deaf/hard of hearing (i.e., within the Early Hearing Detection Intervention network. Please see https://www.cdc.gov/ncbddd/hearingloss/ehdi-programs.html
Yes No Unsure
Which state did you live in when your child was receiving early intervention services for DHH children?
At the time you are completing this survey, is your child currently enrolled in early intervention for children who are DHH?
Yes
No
If you are not currently enrolled in DHH specific early intervention, what years was your child enrolled?
At what age did your child enter the EHDI early intervention program?
0 months - 12 months 12 months - 24 months 24 months - 36 months
What early intervention services does/did your child receive? Please select all that apply
Do you/does your child receive (or did they receive) American Sign Language (ASL) ASL instruction as part of early intervention?
Yes
No
Have you been offered a chance to meet with a deaf/Deaf/HH role model?
Yes
No
Have you been offered opportunities to meet with a role model who has similar developmental needs as your child? (For example, a DHH adult with cerebral palsy, or a DHH adult who is also blind )
Yes
No
Have you been offered opportunities to meet with other families of children who are DHH?
Yes
No
Have you been offered opportunities to meet with other families of children who are DHH with similar developmental needs as your child? (e.g., DHH children with autism; DHH children with cerebral palsy; DHH children with Down Syndrome)
Yes
No
One thing that would make early intervention easier or better for my child's needs would be.....
Did your child spend time in the neonatal intensive care unit (NICU) following delivery?
Yes
No
Does your child have any additional developmental diagnoses or medical concerns known to impact development?
Yes
No
What additional developmental diagnoses or medical concerns does your child have?
Was your child's developmental/medical concern known or diagnosed at the time of their hearing loss diagnosis?
Yes
No
Was your child's developmental concern identified before they were discharged from early intervention services? (e.g., before age 3)?
Yes
No
How do you describe your experience of the journey of hearing loss identification, amplification and intervention for your child?
How do you describe the services you obtained related to your child's hearing loss and communication between the providers of these services?
What supports would you recommend to other parents?
What would make accessing support easier?
Are there any resources or supports that you did not get but wish you would have received?
Thank you for taking the survey.
Yes
No