Social Science & Medicine 66 (2008) 2436e2447

www.elsevier.com/locate/socscimed

How Japanese parents of deaf children arrive at decisions

regarding pediatric cochlear implantation surgery:
A qualitative study
Suguru Okubo*, Miyako Takahashi, Ichiro Kai
The University of Tokyo, Bunkyo-ku, Tokyo-to, Japan
Available online 24 March 2008

Abstract
In recent years, many children with severe or profound congenital hearing loss have undergone treatment to receive cochlear
implants; however, the efficacy and risks associated with pediatric cochlear implants are still unknown. Some deaf adults are
opposed to parents making the decision regarding cochlear implants for their children. To elucidate the benefits and risks perceived
by parents and to investigate parents decision-making processes, we interviewed 26 parents of deaf children (aged 12 years or
younger) who live in the wider Tokyo area, Japan.
The results showed that the participants perceived auditory and speech improvements as benefits. On the other hand, participants
pointed out various risks associated with cochlear implantation such as medical complications, restrictions on daily activities, cost
of cochlear implant upgrades, low effectiveness, and the negative psychosocial impact associated with the implants. Participants
who emphasized the benefits of the surgery tended to approve of cochlear implants. Participants who emphasized the risks of
the surgery tended to disapprove. All participants, however, were reluctant to make the decision to undergo cochlear implants
on behalf of their children due to the uncertain benefits and risks. Participants who believed that early implantation during infancy
would be associated with better outcomes regarded their surrogate decision-making as necessary and approved the treatment. This
decision, however, was made with certain stipulations; for example, these parents resolved to discuss the decision with their children as they got older, and would give their children the option of having the implant removed. Those who did not believe claims
about the effectiveness of early implantation postponed decision-making. These results suggest that guardians face difficulty in
decision-making and need information and support from various professionals, deaf adults, parents of children with implants,
and children with implants themselves.
2008 Elsevier Ltd. All rights reserved.
Keywords: Japan; Pediatric cochlear implants; Decision-making; Deafness; Parents; Children

Introduction

* Corresponding author. The University of Tokyo, Social Gerontology, 7-3-1 Hongo, Bunkyo-ku, Tokyo-to, Japan. Tel./fax: 81 3 5841
3514.
E-mail address: sgr-tky@umin.ac.jp (S. Okubo).
0277-9536/$ - see front matter 2008 Elsevier Ltd. All rights reserved.
doi:10.1016/j.socscimed.2008.02.013

Severe, bilateral congenital hearing loss delays and

impairs speech development (Davis & Hind, 1999). Estimates of the prevalence of congenital hearing loss
range from 1/1000 to 2/1000 (Parving, 1999). Hearing
aids have been used for many years to mitigate the

S. Okubo et al. / Social Science & Medicine 66 (2008) 2436e2447

delays in speech development, and are effective for

conductive hearing loss, but not for sensorineural hearing loss. Cochlear implants were invented in the 1970s
to address this issue (House & Urban, 1973). They are
surgically implanted electronic devices that enable children with severe hearing loss to experience sound.
Speech processors placed outside the body change
sound into electronic signals and electrodes inserted
into the cochlea stimulate the acoustic nerve. At first,
only adults who had lost their hearing later in life received cochlear implants, and it was thought that children with congenital hearing loss would not benefit
from the devices (National Institute of Health, 1988).
Later, however, the U.S. Food and Drug Administration
(FDA) approved pediatric cochlear implants based on
positive results from evaluation studies. As a result,
many children worldwide have since received cochlear
implants (Goycoolea & Latin American Cochlear
Implant Group, 2005). In the United States, nearly
15,000 children have received implants (National Institute on Deafness and Other Communication Disorders,
2006). In Japan, some doctors began to perform
cochlear implantation surgery on deaf adults after Funasakas research in 1986 (Funasaka et al., 1986),
which reports the first surgery in Japan. In 1998, the
Oto-Rhino-Laryngological Society of Japan (1998) announced new criteria for pediatric cochlear implants:
recipients must be 2 years of age or older, and have bilateral and severe-to-profound deafness (100 dB);
hearing aids must be shown to be ineffective; and parental informed consent must be obtained. Since this
announcement, the number of children receiving
implantation surgery has been increasing. Ninety-two
hospitals in Japan are currently qualified to perform
the surgery, and approximately 200 children are reported to receive cochlear implants each year (Association of Cochlear Implant Transmitted Audition, 2005).
Despite the growing number of such procedures,
some problems with pediatric cochlear implants persist.
Cochlear implants have not yet proved to be as effective
for children with congenital hearing loss as for adults
or children with postlingual hearing loss (National
Institute of Health, 1995). In addition, implant surgery
can cause adverse effects such as facial nerve palsy
and dysgeusia (Bhatia, Gibbin, Nikolopoulos, &
ODonoghue, 2004; Hoffman & Cohen, 1995). Therefore, the Oto-Rhino-Laryngological Society of Japan
(1998) stated that an understanding of these risks by
parents and family is a prerequisite for pediatric
implantation.
Additionally, there is an ethical controversy over pediatric cochlear implants. Some Deaf people regard

2437

deafness as a cultural identity, and use national Sign

Language developed among deaf people (Kimura
& Ichida, 1995; Lane, 1999) (in this article, Deaf refers to a socio-cultural group who use Sign Language
and deaf means the auditory condition of not being
able to hear sounds). They have argued that a deaf
child without any additional disabilities is perfectly
healthy, thus it is unethical to operate on the healthy
child. They reject the need for interventions to improve
hearing (Lane, 1999). Although Nakamura (2006), an
anthropologist who studied Deaf people in Japan,
states that there is relatively little interest in the ethical
aspect of cochlear implants within the deaf community,
some Japanese Deaf adults strongly oppose pediatric
cochlear implants. Osonoe, a Japanese Sign Language
teacher, has stated that parental decision-making about
implantation at an early age, without taking into account childrens preferences, violates the childrens
rights. Kimura, another Japanese Sign Language
teacher, has stated that hearing parents persistently desire hearing improvement although the Deaf children
themselves do not need it (Kimura & Osonoe, 2002).
A number of medical professionals in Japan have
also suggested that Deaf peoples concerns are worth
addressing (Kaga, 2003).
Given the potential risks and ethical controversy,
parents of deaf children often find it difficult to decide
whether their child should receive cochlear implants.
To date, a few studies on the parents decision-making
process have been undertaken in the United States and
UK. Kluwin and Stewart (2000) conducted a telephone
survey in the United States of parents preferences on
pediatric cochlear implants. Also in the United States,
Kelsay and Tyler (1996) asked parents whose children
underwent implant surgery about the potential disadvantages associated with the procedure, but did not
delve into the details of their decision-making process.
Sach and Whynes (2005) interviewed 216 British
families after implant surgery to understand parental
perspectives on the outcome of pediatric cochlear implantation, and also asked questions concerning decision-making. Although they acknowledged the risks
associated with pediatric cochlear implantation, Sach
and Wynes stated that the majority of parents reported that they had found the decision over implantation relatively straightforward, but did not discuss the
parents perception of the risks before surgery. It is of
great importance for medical professionals and
teachers of deaf children to understand parents views
toward cochlear implants before surgery in order to
support parental decision-making and to promote informed choice. The background described above

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S. Okubo et al. / Social Science & Medicine 66 (2008) 2436e2447

provides the rationale for this exploratory qualitative

study, in which we interviewed parents of deaf children who live in the wider Tokyo area. Our two aims
were (1) to elucidate the potential benefits and risks
associated with pediatric cochlear implants as perceived by parents of deaf children, and (2) to reveal
the decision-making process regarding implantation
surgery.
Methods
Recruitment of participants
The inclusion criteria for interview participants
were that they can hear, have deaf infants or children,
and live in the wider Tokyo area. We excluded parents
whose children were more than 12 years old. Pediatric
cochlear implantations were first performed in Japan in
1991 (Kurauchi et al., 1998); we wanted to recruit parents who decided to proceed with cochlear implants
well after the procedure became a readily available option. Deaf parents were excluded because they have
a different attitude toward the need to treat childrens
hearing impairment in comparison with hearing parents (Stein, Barnett, & Padden, 2001). More than
90% of parents of deaf infants have intact hearing
(Schein & Delk, 1974).
We used purposeful sampling to recruit participants
(Patton, 1990). We initially recruited participants
through the mailing list of an adult cochlear implant
patient group, which also has members who are parents of children who have cochlear implants. We
also held information sessions about our study at
two public schools for deaf children and asked parents
to participate in the study. These two schools accept
severe-to-profoundly deaf children from the time their
deafness is identified until they are 18 years old. Both
schools sometimes use Sign Language, but almost always teach in spoken language. After conducting
a number of interviews, analysis of the collected
data revealed a scarcity of viewpoints from parents
who decided against cochlear implantation for their
children. Thus, in order to actively recruit such
parents, we asked for cooperation from a private institution providing speech therapy that does not recommend pediatric cochlear implants. The institutions
teachers use Sign Language fluently and sometimes
invite deaf adults for teaching and playing with the
students. Furthermore, we solicited a parent group of
deaf children that promotes the Deaf identity and is
clearly opposed to pediatric cochlear implants.
Twenty-five parents and one grandmother participated

in this study. Twelve had children with implants and

14 had children without implants.
Data collection
We conducted semi-structured interviews, 21 in total, from May 2005 to February 2006; three couples
and three parents were interviewed together, at their request. The mean duration of the interviews was 52 min,
with a range from 30 to 120 min. The interviews were
held at participants homes, rooms of the institutions,
or large coffee shops with few customers. Participants
were invited to select interview locations that they felt
would maintain their privacy.
With the participants permission, interviews were
tape-recorded and transcribed verbatim by the principal author. Details identifying participants were removed from the transcription. For participants not
wishing their interviews to be tape-recorded, detailed
notes were taken at the interview and used for analysis.
During the interviews, participants were asked
about the factors they considered in making the decision about their child undergoing cochlear implantation, difficulties associated with the decision-making
process, and the reasons why they decided for or
against their child receiving a cochlear implant. Parents whose children did not have cochlear implants
were asked if they would consider the possibility of undergoing implantation treatment in the future.
Analysis
We used a grounded theory approach to analyze the
data (Strauss & Corbin, 1998). Transcribed data were
read line by line and conceptual labels were attached
to pertinent ideas expressed. After grouping similar
concepts into broader categories, we analyzed the relationships between the concepts by constantly comparing the events and meanings in the transcripts. For
example, we compared participants who could readily
decide that their children should receive cochlear implants with those who readily decided that their children
should not to receive implants. We then derived a tentative model to explain the decision-making process
based on the concepts drawn from the interview data.
For the purpose of member checking (Lincoln &
Guba, 1985), the results were sent to two participants e
one who had decided against cochlear implants for
their child, and one with a child who had received a cochlear implant. Their feedback indicated that the categories developed by the authors adequately reflected
these two participants experiences.

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Ethical considerations
Before undertaking interviews, participants were informed of the purpose, data collection method, privacy
protection methods, and their right to withdraw from
the interview at any time. Respondents written consent was then obtained.
This research was approved by the Institutional Review Board of the Graduate School of Medicine, University of Tokyo.
Results
Characteristics of the study participants are shown
in Table 1. We interviewed caretakers of 23 hearingimpaired children, including 21 mothers, 4 fathers,
and a grandmother. Three couples were interviewed together. Of the 23 children, 11 had undergone implantation and 12 had not received implants. At the time of
caretaker interviews, the median age of the children
was 5 years (range: 0e9 years). The median age of

2439

the children at cochlear implantation surgery was 3

years and 5 months (range: 1.5e5.5 years).
All participants recognized both the benefits and the
risks associated with cochlear implantation, and acknowledged considerable difficulty in making this decision on behalf of their children.
Among those who concluded that the benefits outweighed the risks, factors associated with a decision
in favor of implant surgery included a belief in the effectiveness of early implantation and in the necessity
of surrogate decision-making during infancy. Many
of these participants stipulated that their decision was
accompanied by a resolve to discuss their rationale
for implantation with the child at an appropriate age,
and to allow the child the choice of having the implant
removed.
Participants who decided against the procedure
were more likely to doubt the effectiveness of early implantation, or to believe that the risks of implantation
outweighed the benefits.
Weighing risks and benefits

Table 1
Characteristics of study participants
ID Relationship Childs Childs Age at cochlear Education
to child
sex
age
implant surgery facility attended
(years) (years, months) by child
1
2
3
4
5
6
7
8

Mother
Father
Mother
Mother
Mother
Mother
Mother
Mother

Female 3

4, 10

A Deaf school

Male
Female
Female
Male
Male
Male

4
5
6
4
5
3

2,
2,
5,
3,
3,
1,

9 Mother

Male

2, 0

10 Mother

Male

4, 3

11 Mother

Female 8

3, 7

12
13
14
15
16
17
18
19
20
21
22
23
24
25
26

Male
Male

7
0

3, 6
Not implanted

B Deaf school
B Deaf school
B Deaf school
C Deaf school
C Deaf school
D Private speech
therapy center
D Private speech
therapy center
D Private speech
therapy center
D Private speech
therapy center
Other
A Deaf school

Female 1
Male 1

Not implanted
Not implanted

A Deaf school
A Deaf school

Female
Male
Male
Female
Male
Female
Female
Female
Male

Not
Not
Not
Not
Not
Not
Not
Not
Not

A Deaf school
A Deaf school
A Deaf school
A Deaf school
A Deaf school
C Deaf school
C Deaf school
Other
Other

Mother
Father
Mother
Mother
Father
Mother
Grandmother
Mother
Mother
Father
Mother
Mother
Mother
Mother
Mother

3
5
6
8
9
4
5
6
7

10
6
6
0
5
6

implanted
implanted
implanted
implanted
implanted
implanted
implanted
implanted
implanted

The relative importance of perceived benefits and

risks associated with cochlear implantation significantly impacted on the decision-making processes of
participants, as outlined in Fig. 1. Participants who emphasized the benefits tended to decide that their children should receive implantation, and participants
who emphasized risks postponed making a decision
or decided against the surgery.
Benefits
All interview participants, including those who decided against implantation, anticipated that cochlear
implantation would result in improved auditory skills.
Most participants also stated that they felt that speech
would improve following implantation.
Auditory improvement
Participants frequently reported an expectation that
auditory improvement would enable children to avoid
daily dangers such as traffic accidents:
There is a danger of traffic accidents when he goes
out. We usually get out of a cars way by hearing the
sound, but our child cannot. (#3)
Some participants also emphasized the subjective
value of hearing:
When my child grows up and has a child, she will
not be able to hear her own child. That struck me.

S. Okubo et al. / Social Science & Medicine 66 (2008) 2436e2447

2440

Weighing risks and benefits

Benefits
Auditory improvement
Speech improvement
Risks
Medical complications
Restrictions on daily activities
Cost of cochlear implants upgrades
Low effectiveness
Negative psychosocial impact

Decline
implantation
or postpone
decision
Reluctance and the inevitability of surrogate
decision-making

Approval of implantation
with conditions
Fig. 1. Parental decision-making process for pediatric cochlear implantation.

Itll also be good for her to hear crying and know

her childs needs. (#1)
Speech improvement
Many participants cited improvement in speech as
an expected benefit of cochlear implantation:

implantation surgery. Because the procedure involves

implantation of an electrode and receiver coil into
the skull, several participants expressed concern about
surgical mishaps:
I was afraid of surgical mishaps and asked my doctor repeatedly how difficult the surgery was. (#9)

We expect speech so that we can communicate with

him like an ordinary family. Itll be fun. (#9)

Surgical mishaps would deprive him of all hearing

ability. Im very afraid of that. (#26)

In contrast to improved auditory skills, however,

improved speech was not consistently viewed as
beneficial:

Other participants reported worries around potential

post-operative complications:

Because we can communicate with our child by sign

language, we dont need oral communication. I only
expect that cochlear implants would improve her
hearing ability. (#5)
Risks
Perceived risks reported by participants fell into five
main categories: medical complications, restrictions on
daily activities, cost of cochlear implant upgrades, low
effectiveness, and negative psychosocial impact.
Medical complications
Nearly all participants mentioned the risk of medical complications associated with the cochlear

Ive heard some children with implants vomited or

acquired dysgeusia and nerve disorder after surgery.
It would be miserable if that happens . (#3)
Participants also referred to the increased risks of
infection, including meningitis:
My child may get meningitis. Ive heard there is
a possibility that viruses enter the brain through
the cochlea. (#2)
Restrictions on daily activities
Several study participants mentioned that cochlear
implantation limits the ability of children to participate in some activities, including sports. For example,
children with implants are prohibited from playing
sports that could cause major shock to the temporal

S. Okubo et al. / Social Science & Medicine 66 (2008) 2436e2447

region where the electrode and receiver coil are implanted. Moreover, some ordinary daily activities
such as playing tag on a playground carry the risk of
damaging the speech processor and the external transmission coil. Some caretakers regarded these limitations as restrictive and unfavorable for the physical
and mental growth of their children. One participant
said:
I was worried about the restriction on playing
sports. He is fond of martial arts and soccer. I felt
as if I was adding another disability to him. (#9)
Some participants worried that the regular outpatient visits and training necessary for undergoing
cochlear implants would change the childrens daily
lives. Children with implants must receive auditory
and language tests before and after surgery. In addition,
they must participate in post-implantation speech and
hearing therapy for several years. As one participant
reported:
I am totally opposed to implantation because implantation compels my child to regularly go to the
hospital for checkups. If she doesnt receive the implantation, she neednt spend all that time [going to
the hospital]. (#25)
Cost of cochlear implant upgrades
One commonly voiced fear was that children would
regret having received surgery when they became responsible for the costs of upgrading and replacing their
cochlear implants. In Japan, all citizens have public
medical insurance that covers approximately 70% of
the costs associated with implantation. In addition,
families can make use of Ikusei-Iryo, a special medical
budget that provides fee assistance for children with
disabilities. This system further reduces the cost of implantation to between two and three hundred yen
(about 2 U.S. dollars).
Following implantation, however, the fees of replacing the original implant with newer or more sophisticated models are not covered by public medical
insurance. The total cost for upgrades and surgical
procedures range from two to three million yen (about
20,000 U.S. dollars). As one participant discussed, this
financial responsibility can prove to be burdensome for
both the child and the family:
We can pay for the initial surgery, this will be no
problem, but [if we cannot pay in the future despite
my childs will to upgrade the cochlear implant,]
my child may complain about the financial burden
or have to give up getting an upgrade.. (#10)

2441

Without accurate estimates on the implant duration

or frequency of device failure, families are limited in
their ability to gauge the financial impact of the surgery. Some participants reported discussing this issue
with their doctors:
I was very afraid of device failure and asked the
doctor how many years my child would be able to
use it and if she could use it as she got older. I asked
many times, but he had no idea because cochlear
implants are still in the experimental stage and little
concrete information is known about them . (#4)
Low effectiveness
Because cochlear implants are associated with variable outcomes in hearing improvement and acquisition
of speech, some families questioned the effectiveness
of cochlear implants for their children:
I saw children who had good outcomes and bad outcomes. (#5)
Children with implants do not necessarily become
able to speak. The effect is known only after implantation. (#25)
In recent years, researchers have made progress in
identifying factors predictive of implant effectiveness
(Dettman et al., 2004; Kawasaki, Fukushima, Kataoka,
Fukuda, & Nishizaki, 2006). It is, however, still difficult to precisely predict the effectiveness of implantation for individual children prior to surgery.
Negative psychosocial impact
The hearing of children who receive implants may
significantly improve, but they cannot acquire normal
hearing ability. In this study, some participants expressed concerns that this incomplete improvement in
hearing and speech would leave children without a clear
identity in either the hearing or deaf communities:
I worry about my childs identity. As you know,
there is the Deaf world and the hearing world. Cochlear implants will give him better hearing and
speech. He will be more similar to hearing children
than deaf. However, he cannot hear if the cochlear
implant is taken away from him. He doesnt become
a hearing or non-hearing. It is a vague kind of
way to exist. I think he may worry about it during
puberty. (#9)
Another participant was troubled by a deaf mothers
statement that children with implants fall outside established social boundaries:

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S. Okubo et al. / Social Science & Medicine 66 (2008) 2436e2447

(A deaf mother) said that there is a hearing world,

but children with implants are not necessarily hearing. She referred to those who use sign language as
Deaf people, distinguishing the two worlds completely. I told her about our plan for our daughter
to receive an implant and she called my child a social outcast [aburemono e a discriminatory term for
those who are outside social norms]. (#8)
This sentiment speaks to a separation between the
Deaf culture and hearing worlds. Some Deaf individuals in Japan have formed their own community using Japanese Sign Language (Kimura & Ichida, 1995).
The cultural identity of this community is associated
with a rejection of hearing assistance and the use of
Japanese Sign Language rather than spoken language.
Community members tend to regard cochlear implantation as excessive hearing assistance, and to object
to the increased numbers of children with implants.
A participant experienced objection from deaf adults:
I asked some Deaf peoples opinion about cochlear
implants. They were very surprised and angry at my
question. (#5)
Some participants were puzzled by this separation
between hearing and Deaf communities, and wondered
whether children with implants would form a Deaf
identity, hearing identity, or a separate new identity.
Reluctance and the necessity for surrogate
decision-making
All participants who considered cochlear implantation for their children were concerned about the uncertainty of not knowing the wishes of their child. Even
when families felt that the benefits would exceed the
risks, some participants hesitated to decide on behalf
of their child until the child was able to voice a preference. One of the participants said:
Indeed, my child is young [and cannot decide by
herself], but the surgery is performed on her, not
me. My husband and I hesitated to decide. If she
said she wanted to have implants, we wouldnt hesitate. This anxiety is the critical issue for us. (#5)
Among the participants who felt that the benefits
would exceed the risks, a conviction in the necessity
of making decisions during infancy was a predictive
factor in deciding in favor of implantation. These families regarded parental decision-making as inevitable:
As for congenital hearing loss, the guidelines recommend implantation between two and six years

of age. Of course, a two-year-old child cannot

decide. I doubt a five or six-year-old child can decide.I cannot tell. In the end, it is inevitable that
parents have to decide. (#9)
Other participants who doubted the effectiveness of
the surgery and did not think that surrogate decisionmaking was inevitable delayed making a decision until
their children were older.
Approval of implantation with conditions
Participants reported that the ultimate decision to
proceed with cochlear implantation surgery was predicated on two conditions. First, they agreed on the need
to discuss the rationale for implantation with their
children:
We agreed to explain (to her) why we decided to undergo implant treatment. When our child asks us the
reason at a rebellious age, we will tell her, We
wanted to be able to communicate with you using
speech. (#2)
In addition, multiple families reported that their
children would be given autonomy over future use or
removal of the implant:
It depends on my child whether he will use cochlear
implants or not. If he wants to remove them, we will
agree. We wont compel him to continue to use
them. (#8)
Discussion
In our survey of parents with deaf children, we discovered a wide range of perceived risks associated with
pediatric cochlear implantation, as well as a universal
reluctance on the part of parents to be surrogate decision-makers on behalf of their children. In this discussion, we will first summarize the current status on each
risk and offer some suggestions. Second, we will discuss parents reluctance to be surrogate decisionmakers, as well as the credibility of the assertion that
early implantation is most effective because this claim
affects parents ultimate decision.
Many participants mentioned medical complications and restrictions on childrens daily activities as
risks associated with implantation. These concerns
have been pointed out by parents in the United States,
as well (Kelsay & Tyler, 1996). The actual incidence of
surgical complications arising from cochlear implants
has been reported in two recent studies. Bhatia et al.
(2004) reported that out of 300 pediatric cochlear

S. Okubo et al. / Social Science & Medicine 66 (2008) 2436e2447

implantations performed at Nottingham University

Hospital, 7 resulted in major surgical complications
and 48 resulted in minor surgical complications.
Most minor complications were successfully managed
with conservative treatment. Hoffman and Cohen
(1995) reported 112 complications out of 1905 pediatric cochlear implantations from data provided by the
Cochlear Corporation, the implant device manufacturer, including one case of meningitis and 11 facial
nerve injuries. Because the incidence of complications
was one of the most important issues for participants in
our study, the above-mentioned data should be provided to parents to assist in their decision regarding implantation. We also need to continue to collect data
regarding medical complications and their impact on
the childs everyday life. Furthermore, we must consider the possibility of as-yet-unknown complications,
because the use of pediatric cochlear implants is still
considered experimental. For example, one cohort
study in the United States reported that the incidence
of meningitis among pediatric patients receiving an implant with a positioner was higher than the incidence in
a cohort of the same age in the general U.S. population
(Reefhuis et al., 2003). These results led to a voluntary
recall of cochlear implants with a positioner in the
United States. The potential for other unknown complications to occur cannot be ruled out. Medical professionals should discuss the possibility of unknown
complications with parents as part of the decisionmaking process.
Our findings also revealed that some participants
perceived the costs associated with implant upgrades
as a source of concern. Sach, Whynes, Archbold, and
ODonoghue (2005) suggested the largest outof-pocket cost incurred by British families was the
cost of travel associated with undergoing treatment, accounting for 44% of the total money spent. In the
United States, Stern, Yueh, Lewis, Norton, and Sie
(2005) reported that children with implants were
more likely to live in areas with higher median incomes. These results indicate that economic factors influence both decision-making and parental attitudes
toward cochlear implants. To our knowledge, research
on the economic factors has not yet been conducted in
Japan. An additional unexplored question is the influence of cost considerations on the attitudes of children
with implants toward cochlear implants. This lack of
information is due in part to the relatively low number
of deaf adults who received implants during infancy.
With growing numbers of children receiving implants,
however, the financial burden associated with new devices and upgrades will become increasingly clear.

2443

Parents of deaf children today need to be informed

about the uncertainty of the costs associated with implant upgrades. In the future, the need for information
about the projected out-of-pocket costs of implantation
will continue as research yields new advances in
technology.
Another finding from this study was that some participants doubted the effectiveness of cochlear implantation. In the United States and UK, positive
outcomes associated with cochlear implantation
have been reported, including improvement of speech
recognition (Eisenberg et al., 2006), and more successful coping with social and school environments
(Thoutenhoofd, 2006). Stacey, Fortnum, Barton, and
Summerfield (2006) studied 468 British children
who received cochlear implants before 5 years of
age and concluded that the procedure was associated
with reported improvements both in spoken communication skills and in some aspects of educational
achievements and quality of life. We believe, however, that these studies provide insufficient data to
conclusively judge the value of pediatric cochlear implants for two reasons.
First, the long-term effects of surgery have not yet
been reported. As our results indicate, the risks of pediatric cochlear implants include not only short-term
effects but also long-term consequences, including
psychosocial impact. Careful study of these longterm effects is necessary to definitively evaluate the effectiveness of pediatric cochlear implants. Waltzman,
Cohen, Green, and Roland (2002) followed 81 children
with implants in the United States for 5 to 13 years,
and reported significant gains in speech perception,
oral language use, and ability to function in a mainstream environment. Manrique, Cervera-Paz, Huarte,
and Molina (2004a) followed Spanish children with
implants for up to 8 years and suggested that implantation surgery conducted at an early age had better hearing outcomes. The majority of published studies
focusing on children with implants, however, have
had insufficient length of follow-up to demonstrate significant outcomes.
Second, the full benefit derived from pediatric cochlear implantation may not be realized without appropriate post-implant therapy. Although children with
implants who received speech therapy from an experienced audiologist and speech therapist may be able to
acquire good hearing and speech outcomes, children
with implants who are not able to access these professional services would not expect similar outcomes.
One British study found that parents expressed dissatisfaction at the lack of suitable schools, some

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S. Okubo et al. / Social Science & Medicine 66 (2008) 2436e2447

observing that hearing units were not necessarily located in schools with the best academic reputations
(Sach & Whynes, 2005). In Japan, there are 92 hospitals qualified to perform implant surgery, but not all of
them provide speech therapy for deaf children with implants (Association of Cochlear Implant Transmitted
Audition, 2005). Of the 10,000 licensed speech therapists in Japan (Ministry of Health, Labour, and
Welfare, 2006), only a fraction can perform speech
therapy for children with pediatric cochlear implants.
Parents need to be given accurate information on the
availability of options for post-implant speech therapy
for their geographic region.
It is interesting to note that some participants were
worried about the negative impact of an implant on
the identity of their children. This risk was not reported
by Kelsay and Tyler (1996) in their investigation of
parents expectations before and after cochlear implant
surgery. The possible negative impact of implantation
has been suggested by a number of Deaf individuals
and sociologists in the United States and Japan (BatChava, 2000; Kimura & Osonoe, 2002; Lane, 1999;
Tyler, 1993). Though detailed data are lacking, we believe that cochlear implantation and Japanese educational trends will influence the development of
psychosocial and cultural identity for deaf Japanese
children.
With respect to Japanese educational trends, many
deaf children in Japan are being placed in mainstream
educational environments, where they attend normal
classes, are taught with spoken language, and are encouraged to create an identity among hearing children.
These mainstreamed deaf students create an identity
distinct from those who have attended schools for the
deaf, considered by many to be the birthplace of the
Deaf identity (Nakamura, 2003). They tend to be eager
to be included in the hearing community and unwilling
to participate in the Deaf communities. They do not
understand Japanese Sign Language used by Deaf people, preferring to communicate using spoken language.
Children with implants are frequently included in this
group of mainstreamed deaf youth.
Some children with implants, especially those for
whom implantation has not resulted in significant
gains in speech perception, oral language use, and/or
the ability to function in a mainstream environment,
may constitute a third group of deaf youth. When hearing or speech deficits prevent mainstreamed deaf children from integrating or succeeding in a hearing
educational environment, these students are returned
to schools for the deaf. Karen Nakamura (2003) called
them U-Turn Deaf. Some U-Turning deaf

students feel embarrassed when using Sign Language

and adapting themselves into a Deaf community.
Given that cochlear implants deliver variable results
in the degree of hearing and speech improvement,
children with implants who were mainstreamed and
cannot fit into their environment may also U-Turn
into schools for the deaf. At this time, we do not
have sufficient data to rigorously assess the impact
of U-Turning on the identity of children with
implants. Further longitudinal studies that follow-up
children with implants for several years are needed
to fully evaluate the development of cultural identity
in this population of children. These data would
greatly benefit families concerned about the psychosocial impact of implantation.
Some participants in our study experienced objections to implantation from Deaf individuals, and wondered how cochlear implantation would influence
a childs identity as a deaf individual. Kelsay and
Tyler (1996) found that parents in the United States
held some expectation of misconceptions from the
Deaf community. Though prevalent views toward pediatric cochlear implants among deaf adults are undocumented, there is evidence that at least a portion
of the Deaf community in both Japan and the United
States is opposed to them (Kimura & Osonoe, 2002;
Lane, 1999). Children with implants who are aware
of this opposition may exhibit reluctance or ambivalence to wearing cochlear implants. The opinions of
Deaf adults regarding pediatric cochlear implants
are significant to parents worried about the ability
of their children to identify as Deaf individuals. As
part of the pre-implant discussion with medical professionals, parents would benefit from having the
opportunity to hear about the attitudes of deaf adults,
including those who insist on Deaf identity, and consider the meaning of implantation on the childs
identity.
Given the great diversity of cochlear implant risks
perceived by parents, we believe that a discussion forum should be established for families considering
implantation, medical professionals, and deaf adults.
Such a forum would provide parents with more balanced views from different perspectives. Sharing
experiences among families who have undergone implantation may help mitigate fears around the negative
impact of implants on the daily lives of children.
Teachers and speech therapists would be able to share
concrete information from their experiences of working with children with implants in educational settings. Opportunities to hear about the attitudes of
the Deaf community toward cochlear implants, as

S. Okubo et al. / Social Science & Medicine 66 (2008) 2436e2447

well as academic research and debate beyond the field

of medicine, would give parents considering implantation more accurate information about the actual
experiences and implications of undergoing the
procedure.
To our knowledge, our study is the first to reveal
a universal reluctance on the part of parents to act as
surrogate decision-makers when it comes to cochlear
implantation for their young children. This reluctance
to be the surrogate decision-maker led parents to predicate their decisions on certain conditions. Some parents referred to their perceived responsibility to
explain their rationale for implantation to their children in the future. Other parents argued that they
would respect their childrens wishes regarding implant removal in the future. Additional research is
needed to determine if parents follow through with
these resolutions as their children grow up. In a study
by Rose, Vernon, and Pool (1996), some U.S. children
with implants ceased using the devices when they
were older. Further investigation is needed to understand the reasons to continue or discontinue use of cochlear implants.
Despite the difficulty in arriving at such a decision,
12 participants proceeded with the cochlear implantation procedure for their children. These parents
believed that implantation at an earlier age would
lead to better treatment outcomes. The Oto-RhinoLaryngological Society of Japan (2006) recommends
cochlear implantation at 18 months of age , although
no conclusive evidence exists to support the proposal.
The optimal age of implantation is still unknown; earlier studies conducted in different countries had different age criteria: 2 years old in Spain (Manrique,
Cervera-Paz, Huarte, & Molina, 2004b), 3 years old
in Austria and Germany (Baumgartner et al., 2002),
and 4 years old in Belgium (Govaerts et al., 2002). Italian institutions perform implantation surgery on infants
who are younger than 6 months of age (Colletti et al.,
2005). In addition to the variability in age at which the
procedure may be performed, post-implantation educational resources, such as speech therapy, are not necessarily adequately accessible in Japan; children who
undergo early implantation, therefore, may not derive
full benefit. Medical professionals should avoid exaggerating the effectiveness of early implantation and
pressuring parents into making a hurried decision.
Even if the effectiveness of early implantation is discussed as an advantage, this should be presented in
the context of the educational resources and speech
therapy subsequently available to the children and
parents.

2445

This study has a number of limitations. First, we

only interviewed parents with normal hearing. The
views of Deaf parents on pediatric cochlear implantation and the accompanying decision-making process
would also be of significant value. They may have totally different opinions about assistance needed for
their deaf children. Second, participants in this study
lived in the Tokyo urban area where the concentration
of medical professionals and facilities approved by the
Ministry of Health, Labour and Welfare to perform
implantation surgery is relatively high. Parents of
deaf children who live in rural areas lacking medical
facilities and information may have different perspectives. It will be important to investigate the variety of
individual differences in the decision-making process
as well as the degree of influence parents receive
from medical professionals or teachers.
Despite these limitations, the results of this research
are valuable in understanding the process by which
Japanese parents weigh the benefits and risks associated with pediatric cochlear implants. We found that
the unknown risks and uncertain effectiveness made
it difficult for parents to decide on behalf of their children. We, therefore, recommend that relevant professionals take into account parental perspectives, which
are concerned with many issues beyond hearing improvement and surgical complications. Given the variety of perceived risks, it may be valuable to create
a forum for parents of deaf children to gain information from children with implants, their parents, and
deaf adults, as well as professionals. Furthermore,
given the uncertainties associated with pediatric cochlear implants, it is of prime importance that parents
obtain accurate, long-term information regarding both
the medical and social aspects of cochlear implantation. Throughout the decision-making process, the issues should be discussed repeatedly so that in the
end, parents are satisfied that they have made informed
decisions.
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