Cochlear Americas Severe Hearing Loss Survey

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Cochlear AmericasSevere Hearing Loss Survey

• Prepared for
• April 2008

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Table of Contents
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Research Objectives

• This survey was designed to provide Cochlear
  Americas with data to assist in its campaign to
  raise awareness of advanced hearing loss.
• Specifically, the survey examines
• The impact severe hearing loss can have on the
  lives of sufferers and those around them
• The emotional impact severe hearing loss can have
  on sufferers and the people around them
• The impact severe hearing loss can have on
  relationships and,
• Issues related to treatment for severe hearing
  loss.

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Methodology

• 506 interviews were conducted online among
  sufferers of severe hearing loss and friends and
  family of someone with severe hearing loss.
• The sample was drawn using a list of
  pre-identified sufferers and friends and family.
• The survey was conducted between March 10 and 23,
  2008 as follows
• 200 severe hearing loss sufferers and,
• 306 friends and family of severe hearing loss
  sufferers.
• The margins of error are
• /-4.4 percentage points for the total sample
• /-6.9 percentage points for hearing loss
  sufferers and,
• /-5.6 percentage points at the 95 confidence
  level for each segment.
• Notes
• Percents may not total 100 due to rounding.
• An asterisk () indicates percents between 0 and
  
• A hyphen (-) indicates no responses in that
  category.
• A indicates a statistically significant
  difference at the 95 confidence level.

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Executive Summary
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Executive Summary The Impact of Severe Hearing
Loss

• As might be expected, the inability to converse
  with family and friends is seen as the biggest
  impact on the lives of those with severe hearing
  loss.
• Sufferers miss not being able to take part in and
  enjoy phone conversations and say if their
  hearing were restored would most like to hear the
  voice of another.
• However, beyond being able to take part in
  conversations, sufferers also feel as though they
  are missing out on the cultural aspects of life
  such as the theatre, cinema and music.
• Further, more than those around them imagine,
  sufferers feel that their hearing loss impacts
  the intimacy of their relationships and their
  ability to stay in contact with friends.

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Executive SummaryThe Impact on Relationships

• Friendships appear to suffer due to severe
  hearing loss. Most often sufferers and friends
  and family say relationships with friends are
  adversely impacted due to severe hearing loss.
• However sufferers feel their spousal
  relationships are the ones most adversely
  impacted, mainly due to the fact that they cant
  effectively communicate to the person closest to
  them.
• Friends and family also feel a burden that their
  relationships are impacted because they have to
  yell to be heard.
• Given all these adversities, the good news is
  that most feel that sufferers of severe hearing
  loss have networks of support around them. In
  most cases, it is their family.

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Executive SummaryTreatment

• Sufferers are getting treatment and are doing so
  within six months of thinking they have severe
  hearing loss. Most often, that treatment is a
  hearing aid.
• Expense is the most common reason sufferers are
  not getting treatment. Those who waited more
  than six months tended to believe their condition
  was not sufficiently severe.
• Family encouragement most frequently spurs
  sufferers into action to get treatment. Friends
  and family see great importance in treatment as a
  way for sufferers to improve their quality of
  life.
• However, sufferers are more likely to act due to
  problems at work or school than those around them
  would assume.
• Most who get treatment report being satisfied
  with the results and describe how good it feels
  to be able to hear their favorite sounds again.
• Awareness of cochlear implants is moderate. Only
  two-fifths of sufferers have heard of them and
  very few have them (citing expense as the main
  reason for not getting one).

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Executive SummaryConclusions and Implications

• The inability to make a personal connection with
  others has the biggest impact on both hearing
  loss sufferers and those around them.
• Severe hearing loss not only denies sufferers the
  opportunity to enjoy phone conversations with
  loved ones, it often puts them in a position
  where they avoid certain situations and
  interactions with others.
• Furthermore, hearing loss affects the intimacy of
  the relationships and the ability to maintain
  friendships.
• It also transcends the human connection, meaning
  sufferers miss out on life-enriching experiences
  such as music, the theatre and movies.
• Friends and family overwhelmingly feel it is
  important the person they know with severe
  hearing loss seek out treatment (almost half
  think it is very important) in order to improve
  that persons quality of life, improve their
  relationships with family and friends, and make
  sure they dont miss out on important family
  events.

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Executive SummaryConclusions and Implications

• Most severe hearing loss sufferers are satisfied
  with the treatment they receive (64) and the
  fact they can hear their favorite sounds again
  (music and familiar voices) makes them happy.
• However, the biggest reason for not seeking
  treatment is expense. Finding ways to counter
  this perception could open up greater treatment
  options for sufferers.
• Awareness of cochlear implants is low, especially
  among sufferers (only 37). As a result, the
  majority of people who stand to benefit from
  these treatment solutions do not know they exist.

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Detailed FindingsThe Impact of Severe Hearing
Loss
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Key Findings The Impact of Severe Hearing Loss

• The inability to converse with family and friends
  is seen as the most important aspect of life
  those with severe hearing loss are missing out
  on.
• Those who were able to hear in the past most
  commonly cite the voice of another as the sound
  they would most like to hear again.
• Further, almost three-quarters of sufferers and
  those around them believe the lives of those with
  severe hearing loss are impacted by not being
  able to enjoy phone conversations.
• In fact, sufferers report that phone
  conversations are the activities they feel they
  are missing out on the most due to their hearing
  loss.
• Beyond phone conversations, sufferers also feel
  they are missing out on cultural activities such
  as going to the theatre, the movies and listening
  to music.
• However, the lives of sufferers are also impacted
  by tendencies to avoid unfamiliar situations and
  interact less with others.
• For sufferers of severe hearing loss, the
  intimacy of relationships and losing contact with
  friends has a bigger impact on their lives than
  those around them assume.

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Both sufferers and friends and family see the
inability to enjoy talking on the phone as the
biggest impact of severe hearing loss.
Thinking about how severe hearing loss has
impacted your life/the life of the person you
know with severe hearing loss, please indicate
the extent to which you agree or disagree with
the following statements.
All Respondents
NET Agree
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Severe hearing loss has least impact when it
comes to staying in contact with family members.
Thinking about how severe hearing loss has
impacted your life/the life of the person you
know with severe hearing loss, please indicate
the extent to which you agree or disagree with
the following statements.
All Respondents
NET Agree
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Those with severe hearing loss are more likely to
feel their condition affects the intimacy of
their relationships and the ability to maintain
contact with friends compared to family and
friends.
Thinking about how severe hearing loss has
impacted your life/the life of the person you
know with severe hearing loss, please indicate
the extent to which you agree or disagree with
the following statements.
Percent Agree
O indicates significant difference at 95
confidence level
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However, it is conversations with family and
friends which is seen as the aspect of life that
those with severe hearing loss are missing out on
the most.
Please write downwith a brief explanation as to
whywhat you feel is the single-most important
aspect of life you/the person you know are/is
missing out on as a result of your severe hearing
loss.
All Respondents (All responses over 5)
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Severe hearing loss sufferers are more likely to
feel they are missing out by not being able to
understand others and having to ask others to
repeat themselves.
Please write downwith a brief explanation as to
whywhat you feel is the single-most important
aspect of life you/the person you know are/is
missing out on as a result of your severe hearing
loss.
All responses over 5
O indicates significant difference at 95
confidence level
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While those with hearing loss feel they are
missing out most on phone calls, a high
percentage also feel they are missing out
cultural activities, such as the theatre, movies
and music.
Here is a list of some activities people with
severe hearing loss might miss out on. Please
indicate whether or not you feel your hearing
loss causes you to miss out on each of the
following.
Sufferers (Percent responding Yes)
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In Their Own Words Hearing Loss Sufferers
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In Their Own Words Friends and Family
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Most often those who have been able to hear in
the past say they would most like to hear
anothers voice if their hearing were restored.
Since suffering severe hearing loss, please write
down with a brief explanation the sound you would
most like to hear if your hearing were restored.
Sufferers who were able to hear in the
past (N179)
More likely to get treatment within a year (21)
More likely Under 50 (17)
More likely Under 50 (13)
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In Their Own Words
Since suffering severe hearing loss, please write
down with a brief explanation the sound you would
most like to hear if your hearing were restored?
Voices on the telephone. I feel isolated
without being able to use it.
I miss hearing kids laughing and birds singing
Birds chirping, listening to my grandchildren
say I love you and tell me secrets in my ear
rather than my having to see their faces in order
to understand what they are saying.
I want to hear conversations again. I want to
know what is being said, I want to feel like I am
part of what is going on. Now I feel like I'm on
the outside looking in.
I would like to be able to hear soft pieces of
music clearly again, particularly Queen and ELO
songs.
The sounds of nature that I used to enjoy so
much when I was a young boy - birds chirping,
crickets chirping, frogs croaking, owls hooting,
etc.
The details of a beautiful live symphony.
It feels intimate and personal. I can't be
confided with secrets if I can't hear a whisper.
The music I grew up listening to as a child. .
The sound of musical instruments. It makes me
feel relaxed and calm.
Low whispers, people that talk in low tones, my
husband trying to start a conversation with me.
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Detailed FindingsThe Impact on Relationships
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Key Findings The Impact on Relationships

• For both sufferers and friends and family,
  friendships are most frequently mentioned as
  being adversely impacted by severe hearing loss.
• That said, those with severe hearing loss tend to
  feel that their relationships with their spouse
  and with their colleagues are adversely impacted
  more often than those around them imagine.
• Friends and family tend to overestimate the
  impact severe hearing loss has on sufferers
  relationships with their grandchildren.
• In fact, spousal relationships are most often
  cited by sufferers as the relationship most
  adversely affected by severe hearing loss.
• Friends and family most often say their
  relationships with sufferers are impacted because
  they continually have to yell to be heard.
• While severe hearing loss does adversely impact
  relationships, most believe that sufferers have
  support networks that help them deal with their
  condition.
• Most rely on their family for support.

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Overall, friendships are most often seen as the
relationship adversely impacted by severe hearing
loss.
Thinking about the people around you/the person
you know who sufferers from severe hearing loss,
what impact has your/his or her hearing loss had
on your/their relationships? Use a scale from 0
to 10 where a 0 means your hearing loss has no
adverse impact on a relationship and a 10 means
your hearing loss has an extremely adverse impact
on a relationship. You can use any number
between 0 and 10.
All Respondents
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However, sufferers more frequently feel
relationships with their spouse and with
colleagues/co-workers are more adversely impacted
than those around them assume.
Thinking about the people around you/the person
you know who sufferers from severe hearing loss,
what impact has your hearing loss/his or her
hearing loss had on your/their relationships?
Use a scale from 0 to 10 where a 0 means your
hearing loss has no adverse impact on a
relationship and a 10 means your hearing loss has
an extremely adverse impact on a relationship.
You can use any number between 0 and 10.
NET Adverse
O indicates significant difference at 95
confidence level
27
In fact of all their relationships, sufferers of
severe hearing loss feel the ones with their
spouses are adversely affected the most.
Please select the relationship you believe has
been the most adversely affected by your severe
hearing loss.
Severe Hearing Loss Sufferers (N200)
More likely Over 50 (34) HH income 75-99K
(39)
More likely HH income More likely Under 50 (24)
More likely Under 50 (15) HH income 20-49K
(18)
More likely Over 50 (14) Get support from
family (8) Got treatment btwn 1-5 years (27)
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How relationships are impacted for hearing loss
sufferers.
Severe Hearing Loss Sufferers (N200)
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Friends and family of those affected by severe
hearing loss feel their relationships are
impacted due to the fact they have to yell to
communicate.
Please describe how your relationship has been
impacted by your friend or family members severe
hearing loss. Provide as much detail as
possible.
Friends and Family (All responses over 5)
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In Their Own Words
Please describe how your relationship has been
impacted by your friend or family members severe
hearing loss? Provide as much detail as
possible.
He does not join in conversations. There is no
way to know what he thinks about pertaining to
the conversation.
I am unable to share my happiness with this
person and to have a better relationship with
them.
He is unwilling to communicate with us.
It's been very hard to feel any closeness to my
grandmother since her hearing loss.
It has made our relationship very difficult due
to him not being able to hear and me having to
continually repeat myself.
I feel as through wisdom and knowledge cannot
not be shared between us. I think that the bond
we have could be stronger if we could communicate
a little more clearer.
It is used as a crutch to avoid taking
responsibility for actions.
She sometimes goes through undesirable emotions
when interacting with others, due to her
frustration from not being able to hear/know
different things without a strained effort.
The individual does not want to participate in
family gathering unless one certain person is
there. If that person cannot make it then he
will not go. I am that person and there are
times, my being 100 percent disabled, I am just
not available. This makes me feel bad because it
means he will be by himself and be more miserable
than ever.
Just sometimes when I speak I feel as though Im
being ignored.
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Overall, most of those with severe hearing loss
have the support they need to deal with their
condition. In most cases, family is relied on
the most for support.
To what extent do you feel your/his or her
family, friends, professional relationships,
community groups and/or online communities
provide you/him or her with the support needed
for dealing with severe hearing loss?
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Detailed FindingsTreatment
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Key Findings Treatment

• For the most part, those affected by severe
  hearing loss seek treatment for their condition
  and most often the treatment involves getting a
  hearing aid.
• Over half of sufferers sought treatment within
  six months of suspecting they had severe hearing
  loss. Those who waited longer did not believe
  their hearing loss was severe.
• Expense is most commonly cited by sufferers for
  not seeking treatment.
• Most who do get treatment are prompted to do so
  as a result of encouragement from their family.
• Overwhelmingly friends and family feel it is
  important that the person they know seek out
  treatment (almost half think it is very
  important).
• They believe that in doing so, it will improve
  that persons quality of life overall, in
  addition to improving their relationships with
  family and friends ,and making sure they dont
  miss out on family events.
• Furthermore, almost two-thirds are satisfied with
  the treatment they received for severe hearing
  loss, explaining that being able to hear their
  favorite sounds again (such as music and the
  voices of others) fills them with positive
  emotions.

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Key Findings Treatment

• Awareness of cochlear implants is moderate, with
  two-in-five of sufferers and those around them
  aware of the devices.
• In fact, less than two-in-five of those with
  severe hearing loss have heard of cochlear
  implants.
• Awareness of bone anchored sound aids is even
  lower, less than five-percent.
• Those who are aware of cochlear implants but have
  decided not to get one cite expense as the main
  reason.

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In most cases, those with severe hearing loss
sought treatment for their condition.
Have you/the person you know ever sought
treatment for your/their severe hearing loss?
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Of those who have sought treatment, the majority
did so within six months of thinking they had
severe hearing loss. Those who waited more than
a year most often did not believe their condition
was severe.
How long after initially thinking you might be
suffering from severe hearing loss did you seek
treatment?
Severe Hearing Loss Sufferers (N137)
37
Expense is most commonly cited as the reason for
not seeking treatment.
What are the reasons for not seeking treatment
for your severe hearing loss?
Severe Hearing Loss Sufferers (N63)
38
Overall, family encouragement is the main prompt
to treatment. However, sufferers themselves are
more likely to cite problems at work/school, and
friends and family assume encouragement from
children more often.
Which of the following reasons prompted you/that
person to get treatment for your/their severe
hearing loss?
All Respondents
O indicates significant difference at 95
confidence level
39
Of those who sought treatment, almost two-thirds
are satisfied with the treatment they received
and cite being able to listen to music as their
favorite sound as a result of their restored
hearing.
How satisfied are you with the treatment you have
received?
Severe Hearing Loss Sufferers (N137)
64
40
Most often, being able to hear their favorite
sounds again makes those who suffer with severe
hearing loss happy.
Describe your favorite sound and how it makes you
feel?
Those very/somewhat satisfied with hearing loss
treatment (N88)
41
Overwhelmingly, friends and family of those who
have not sought treatment believe it is important
that they do so as they feel it will improve the
sufferers quality of life.
How important do you think it is that the person
you know with severe hearing loss receives
treatment for his or her condition?
Friends/Family of those who have not sought
treatment (N55)
42
Awareness of cochlear implants is moderate, with
just over two-fifths of sufferers and friends and
family familiar with the devices.
Before today, have you ever heard of __________?
All respondents
43
Further, very few have ever tried to get a
cochlear implant, citing cost as the main reason.
Have you ever tried to get a cochlear implant or
bone anchored sound aid (BAHA)?
Sufferers without a CI or a BAHA (N91)
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Appendix
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Audience Profile
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Audience Profile
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For more information Jonathan Bentley
Director 700 13th Street NW Washington, DC
20005 202.585.2732 phone jbentley_at_krcresearch.com