Cochlear Implant User Experience
Survey Findings
A cochlear implant (CI) decision doesn’t stop at restoring functional hearing. Adults and parents of children with hearing loss commit to a CI decision with significant hope. They hope for a life where they could function and enjoy life like anyone else. Therefore, it’s insufficient to consider solely the technological aspect of a CI user experience. I created a survey to find out how CI users’ quality-of-living outcomes, particularly in education, career and social life.
Scroll the bottom for the PDF (64 slides) if you prefer visuals over words.
Demographics
Age Group
Country of Residence
Age Implanted
Nature of Hearing Loss
Findings
Education
The education questions were shown only to those who were implanted below age 18 (22 out of all respondents). The questions measure the correlation between having CI and their experience at school.
63% of them (14 out of 22) attained at least a bachelor’s degree. 81% of them (18 out of 22) described themselves as ‘having thrived at school’ or ‘made it through and graduated in time’. 72% of them (16 out of 22) said they were able to get hearing-related support in the classroom.
Career
The most common field of work the respondents who are working (21 out of all respondents) are in is Health Science (19%). That’s followed by Marketing, Sales & Service (14.3%) and Education & Training (14.3%).
Social
I employed nine inner-dialogue statements and instructed the respondents to rate the tendency (always, occasionally, seldom or never) of that particular inner dialogue.
Q1 (self-image): “I think about how others would judge me because of my CI (speech processor, surgical scar) or hearing needs.”
Q2 (disclosure of CI): “I try not to let others know that I have CI whenever I could.”
Q3 (requesting accommodation): “I worry about asking others to repeat themselves.”
Q4 (sense of aesthetics): “My CI makes me less presentable/less decent-looking.”
Q5 (relationship concern): “I worry if I’ll ever find someone who could see past my hearing loss/hearing needs and love me.”
Q6 (socializing): “I like meeting new people but my hearing makes me feel more cautious about meeting new people.”
Q7 (sense of competency): “I worry if my teachers/peers will question my competency when it comes to leadership in a class/club.”
Q8 (dynamic at home): “I feel like a burden to my family.”
Q9 (contact with CI community): “I don’t want to have any close contact with the deaf and hard-of-hearing community.”
I compared the results in four ways:
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For those implanted below age 18, the frequency of that particular inner dialogue as a teenager VS. as an adult now
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Those implanted below age 18 VS. those implanted at age 18 & above
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Male VS. Female
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Those in western culture (Australia, Canada, the UK & the US) VS. eastern culture (India, Malaysia & Singapore)
1.
For those implanted below age 18, the frequency of that particular inner dialogue as a teenager VS. as an adult now
Overall, the respondents have better social experience today compared to when they were teenagers.
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Details
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The tendency for each of the nine inner dialogues either has decreased or remains largely the same today compared to when they were teenagers.
Inner dialogues for which the frequency has decreased:
Q1 (self-image): “I think about how others would judge me because of my CI (speech processor, surgical scar) or hearing needs.”
Q2 (disclosure of CI): “I try not to let others know that I have CI whenever I could.”
Q3 (requesting accommodation): “I worry about asking others to repeat themselves.”
Q4 (sense of aesthetics): “My CI makes me less presentable/less decent-looking.”
Q7 (sense of competency): “I worry if my teachers/peers will question my competency when it comes to leadership in a class/club.”
Q8 (dynamic at home): “I feel like a burden to my family.”
The tendency remains largely the same for the other inner dialogues:
Q5 (relationship concern): “I worry if I’ll ever find someone who could see past my hearing loss/hearing needs and love me.”
Q6 (socializing): “I like meeting new people but my hearing makes me feel more cautious about meeting new people.”
Q9 (contact with CI community): “I don’t want to have any close contact with the deaf and hard-of-hearing community.”
2.
Those implanted below age 18 VS. those implanted at age 18 & above
Overall, the two groups of respondents have a similar social experience. They differ in only three areas: how comfortable they’re in requesting accommodation, whether CI affects their aesthetics, and whether CI make them perceived less competent
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Details
The two groups mostly have similar tendencies for the nine inner dialogues. They differ only in three inner dialogues:
Q3 (requesting accommodation): “I worry about asking others to repeat themselves.”
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The Implanted between age 0 and 18 group has a higher tendency to have this inner dialogue
Q4 (sense of aesthetics): “My CI makes me less presentable/less decent-looking.”
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The Implanted between age 0 and 18 group has a higher tendency to have this inner dialogue
Q7 (sense of competency): “I worry if my teachers/peers will question my competency when it comes to leadership in a class/club.”
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The Implanted after age 18 group has a higher tendency to have this inner dialogue
3.
Male VS. Female
Overall, male and female respondents have different areas of concern. The male respondents have more concern about their relationship prospect and meeting new people. While the female respondents have more concern about requesting accommodation, how CI affects their aesthetics, and having close contact with the CI community.
Details
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The two groups mostly differ in terms of the kinds of inner dialogue they tend to have.
Q3 (requesting accommodation): “I worry about asking others to repeat themselves.”
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The Female group has a higher tendency to have this inner dialogue
Q4 (sense of aesthetics): “My CI makes me less presentable/less decent-looking.”
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The Female group has a higher tendency to have this inner dialogue
Q5 (relationship concern): “I worry if I’ll ever find someone who could see past my hearing loss/hearing needs and love me.”
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The Male group has a higher tendency to have this inner dialogue
Q6 (socializing): “I like meeting new people but my hearing makes me feel more cautious about meeting new people.”
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The Male group has a higher tendency to have this inner dialogue
Q9 (contact with CI community): “I don’t want to have any close contact with the deaf and hard-of-hearing community.”
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The Male group has a higher tendency to have this inner dialogue
They have similar tendencies for all the other inner dialogues.
4.
Western VS. Eastern Culture
Categorization for this survey analysis:
Western Culture = Australia, Canada the UK, the US
Eastern Culture = India, Malaysia, Singapore
Overall, the respondents from the Eastern Culture have poorer social experience than their Western Culture counterparts. They have more concern, which comes from their having CI, in their social experience.
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Details
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There’s a significant difference between the two groups of respondents in terms of their tendencies for the nine inner dialogues. The Eastern Culture group has a higher tendency for all the inner dialogues, except one in which the Western Culture group shares a similar tendency:
Q3 (requesting accommodation): “I worry about asking others to repeat themselves.”
What’s Next
There are two ways to move forward from here – to understand the issues better or to work on them.
To understand the issues better
a. Employment experience: to find out CI users’ job satisfaction, their access to opportunities and accommodation at the workplace
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b. Go in-depth with each demographic: to find out the major concern for users in each age group, gender and region
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c. Qualitative survey with individual CI users: to find out the narrative and dynamics at play in their everyday experience
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d. Longitudinal research: To find out how their experience changes or fluctuate in different settings and life stages
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e. Cases with a lack of success: To find out what factors are hindering the users (who lag behind their CI peers) from achieving the desired outcomes
To work on them
Education: To establish a system to integrate CI children into mainstream classrooms
Career: To establish a support system for CI users seeking employment or in employment
Social: To establish support groups for CI users, especially in regions outside of the US
PDF slides for visual readers
You may also view the detailed survey results breakdown (more visually pleasing) in this PDF (64 slides)
You could find more cochlear implant user stories here. You could also read about the author of this survey, Peng.
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CI Project collects cochlear implant user stories. I’d like to invite you to join the private Facebook group. You’ll receive an update of each new story (about once a month) and will get to interact with the characters of each story there. I’m also looking for more cochlear implant user stories. I’d appreciate it if you could nominate a cochlear implant user (including yourself) for me to write a story about!
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Join the Facebook group here (click on the FB icon below)!