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Pediatric Cochlear Implantation
The Parents' Perspective
Thomas P. Nikolopoulos, MD, PhD;
Hazel Lloyd, BEd;
Sue Archbold, MPhil;
Gerard M. O'Donoghue, FRCS
Arch Otolaryngol Head Neck Surg. 2001;127:363-367.
ABSTRACT
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Objective To analyze parental views on cochlear implantation, before and in the
years following implantation, to determine whether the results from the intervention
met their expectations.
Design Prospective longitudinal study to assess parental perspectives of an
unselected group of children with cochlear implantation.
Setting Tertiary referral pediatric cochlear implant center in the United Kingdom.
Subjects Forty-three parents of children with cochlear implantation.
Intervention A specifically designed questionnaire was administered to assess preimplant
expectations and observed changes and concerns at 1, 2, and 3 years following
implantation. Three key domains were evaluated: (1) communication with others,
(2) listening to speech without lipreading, and (3) the development of speech
and language.
Results Preoperative expectations were met or surpassed at each of the follow-up
intervals. In the area of communication, 35 (81%) parents expected a definite
improvement preoperatively, and 3 years following implantation, 42 (98%) actually
saw such an improvement. The respective numbers in the area of listening to
speech were 15 (35%) and 38 (88%), and for speech development, 37 (86%) and
37 (86%). Speech development was the major area of concern at all intervals.
Conclusion This study demonstrates the ability of cochlear implantation to meet
or surpass parental expectations in 3 important outcome domains: communication,
listening to speech, and the development of speech and language.
INTRODUCTION
COCHLEAR implants represent the most important advance in the treatment
of individuals with profound deafness in the last century. Although most of
the hearing-impaired population can hear speech through acoustic hearing aids,
many persons with profound deafness obtain no such benefit. The impact of
such profound deafness is particularly great in early childhood, as it severely
restricts the ability to develop spoken language. For these children, cochlear
implants represent the only means of hearing speech and thus of developing
meaningful oral communication abilities.1, 2, 3, 4, 5
Parents are critical evaluators of their child's well-being following
a therapeutic intervention. Their perspective is critically important in the
assessment of outcomes. The aim of this study was to analyze parental views
on cochlear implantation, before and in the years following implantation,
and to determine whether the results of the intervention met their expectations.
MATERIALS AND METHODS
A prospective longitudinal study was undertaken of the parents of a
consecutive group of 43 children with profound deafness who underwent cochlear
implantation. The parents were asked to complete questionnaires before cochlear
implantation and at 1, 2, and 3 years following implantation. Twenty children
(46.5%) were girls and 23 (53.5%) were boys. Age at implantation ranged from
2 to 11 years (mean, 5.3 years). All children received a 22-multichannel
cochlear implant (Nucleus; Cochlear Ltd, Lane Cove, Australia). After implantation,
no child was lost to follow-up and all 43 parents completed the questionnaires
annually during the study.
Each child underwent extensive medical, audiological, linguistic, and
educational assessments to determine suitability for cochlear implantation.
During this period, teachers of the deaf and speech and language therapists
from the implant center made visits to the child's home and school. Parents
were encouraged to seek the views of a range of sources, including adults
with deafness and voluntary organizations for children with deafness. In addition,
visitation days for parents were organized by the implant center, enabling
them to meet implant professionals and parents of children who had previously
undergone cochlear implantation. Reading material was made available to parents
and was supplemented by a videotape of the assessment procedure, hospital
stay, and rehabilitation program. Information was also available for the child's
siblings and peers, with coloring books for younger children and cartoon-type
material for older children.
As no gold standard instrument existed for evaluating parental perspectives
of cochlear implantation, a questionnaire was devised for this purpose (Figure 1). Having made the decision to proceed
with implantation, parents were administered this questionnaire close to the
time of surgery and completed it in writing.
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Figure 1. Parent questionnaire.
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The preimplant questionnaire asked parents to respond to questions about
their expectations in 3 key domains: (1) communication with others, (2) listening
to speech without lipreading, and (3) the development of speech and language.
They were subsequently presented with similar questions at the 1-, 2-, and
3-year intervals following implantation. They were also asked to articulate
specific concerns they may have had with regard to their child's progress.
The format of the questionnaires was that of a 5-point Likert scale, in which
parents could answer "certainly yes," "mostly yes," "mostly no," "certainly
no," or "unable to answer" to statements about these issues.
RESULTS
Parental expectations before implantation and the actual changes they
perceived in their child following implantation are shown in Figure 2,
Figure 3,
Figure 4,
Figure 5,
Figure 6, and
Figure 7. Parents had high expectations in
the fields of communication and development of spoken language (35 [81%] and
37 [86%] parents answered "certainly yes," respectively), whereas their expectations
in the area of listening to speech without lipreading were much lower (15
[35%] answered "certainly yes").
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Figure 2. Preimplant expectations and postimplant
changes in communication as perceived by the parents of children with cochlear
implantation. Numerals at the top of columns are numbers of parents.
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Figure 3. Preimplant expectations and postimplant
changes in listening to speech without lipreading as perceived by the parents
of children with cochlear implantation. Numerals at the top of columns are
numbers of parents.
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Figure 4. Preimplant expectations and postimplant
changes in speech development as perceived by the parents of children with
cochlear implantation. Numerals at the top of columns are numbers of parents.
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Figure 5. Longitudinal study of parental
views in the field of communication. Data are given as number (percentage).
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Figure 6. Longitudinal study of parental
views in the field of listening to speech. Data are given as number (percentage).
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Figure 7. Longitudinal study of parental
views in the field of speech development. Data are given as number (percentage).
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Before the intervention, when asked about their expectation with regard
to communication, 35 (81.4%) of 43 parents expected a definite improvement
following implantation ("certainly yes"). One year following implantation,
38 (88%) parents actually saw such an improvement, and this number increased
to 42 (98%) at the 3-year interval (Figure
2). Therefore, in the field of general communication, the cochlear
implant surpassed parental expectations. Figure 5 shows that even parents who were conservative in their
expectations saw a definite improvement 3 years following cochlear implantation.
Parental expectations regarding improvements in listening to speech
without lipreading were more conservative (35% expected a definite improvement
["certainly yes"]). Therefore, the postoperative percentages (74% in the first
year and 88% in the third year who saw such an improvement
[Figure 3]) revealed a general improvement beyond parents' expectations.
Figure 6 reveals that this difference (35%
vs 88%) is attributed to parents who had low expectations in this area and
who saw a definite improvement after implantation.
A definite improvement in the development of speech and language was
expected preoperatively in 37 (86.0%) of 43 patients. At the follow-up intervals
(1 and 3 years after implantation), the respective numbers of parents who
saw such an improvement were 35 (81%) and 37 (86%)
(Figure 4). Although speech takes several years to develop, the postoperative
outcomes seem to have met preoperative expectations. However,
Figure 7 reveals that, although before implantation no parent responded
with "mostly no" or "certainly no," such responses were found 3 years following
implantation, although the percentage is small (2 parents [4.6%]). These parents'
children are now known to have language learning problems (one following meningitis
and the other congenitally) and have not developed spoken language. However,
they continue to elect to wear their implant system for environmental sound
identification in their teenage years. The concerns of parents with regard
to the progress of their children are illustrated in Table 1 (1 and 3 years after implantation). Speech development remained
the major area of concern at all intervals.
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Parents' Areas of Concern, 1 and 3 Years After Implantation*
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COMMENT
Parental expectations relating to the success of cochlear implantation
are considered so important that decisions about postponement, rejection,
and selection of children for implantation have been based on these expectations.6 In a psychological and social approach to different
disabilities, Wright indicated that "sometimes the wish that all will be well
is so strong as to lead to unrealistic expectations of marked improvement
and eventual recovery."7(p87) When the discrepancy
between expectations and reality is great, disappointment with the degree
of improvement can occur. With regard to traditional methods of amplification,
hearing parents of children with deafness often have unrealistic expectations
about the role of professionals and the capabilities of a hearing aid. Unless
parents receive adequate counseling and guidance, they may believe that professionals
will "take care of everything" by repairing the "damaged" ear or by taking
over responsibility for the child's development.6, 8
Parents may also believe that a cochlear implant will work in much the same
way as eyeglasses and that the child will be able to talk as soon as the fitting
is completed. Unrealistic expectations can lead parents to disappointment
and even anger when such expectations are not met.8
Because cochlear implants are relatively new, expensive, and high-tech, expectations
may be unreasonably high. Influenced by reports in the popular media, parents
may be led to believe that this "bionic ear" is capable of bringing about
a total and immediate change in the ability to hear.6
Therefore, if parents are not clearly counseled about the limitations of the
intervention and the need for their involvement in their child's rehabilitation,
their disillusionment could easily result in nonuse of the implant system
by their child. Thus, thorough counseling is important in cochlear implantation
and especially with regard to children, in whom there is a need for prolonged
rehabilitation for several years before the full potential of the implant
is realized.
Although the role of the parents is essential in all the stages of cochlear
implantation, only one article9 in the literature,
to our knowledge, has addressed the parents' perspective with regard to pediatric
multichannel cochlear implantation. This survey found that advantages and
disadvantages expected by parents preoperatively were consistent with those
reported by parents whose children had used their cochlear implant for 1 to
3 years. However, their results are considerably weakened by the relatively
small number of subjects and the nonlongitudinal design of the study, with
different parents participating at the various intervals (only 1 parent participated
at all intervals).
The present prospective and longitudinal study assesses the parents'
perspective of an unselected group of children with cochlear implants. There
were no exclusions and no losses to follow-up. Therefore, all subjects who
reached the 3-year interval had participated in all the previous intervals.
The results suggest that the outcome of cochlear implantation satisfied
parental expectations. This was true even in the difficult area of speech
and language development. Many critics of cochlear implantation doubted whether
these children would ever obtain material benefits in these domains. Nevertheless,
speech and language remained the most frequent area of concern at all intervals.
This is not surprising, given that speech development in children with profound
deafness is an extremely gradual process that may typically take more than
3 years to develop, especially in the youngest children.10
In the area of listening to speech without lipreading, the results revealed
a general improvement beyond parents' expectations (15 [35%] expected a definite
improvement, but 32 [74%] and 38 [88%] saw a definite improvement in the first
and third years, respectively). This difference was attributed to parents
who had low expectations in this area and saw a definite improvement in the
follow-up intervals. On the other hand, some parents who had high expectations
in this area were more conservative at the follow-up intervals. This highlights
the crucial importance of continued parental counseling to ensure that expectations
are maintained within reasonable limits.
The level of parental satisfaction compared favorably with that of similar
studies11, 12 done for other interventions
(strabismus surgery in children, 85%; tonsillectomy, >90%). It is difficult
to compare these interventions directly with pediatric cochlear implantation.
However, the literature with regard to parental satisfaction following any
kind of surgery is limited, and there is thus a compelling need to involve
parents more in outcomes assessment.13 It is
now becoming more widely accepted that any new method of treatment should
engage the public in discussion about what a national health service should
provide and who should decide it.14 Moreover,
it has also been suggested that repeated evaluation of patients' (or parental)
views should become an integral part of routine health care.13
The high level of parental satisfaction found in the present study may
be attributed to the success of the intervention in restoring hearing combined
with the comprehensive counseling before implantation and its maintenance
during the years following implantation. The satisfaction of parents is an
important benchmark in evaluating pediatric procedures, and this study demonstrates
the ability of cochlear implantation to meet or surpass parental expectations
following the intervention.
AUTHOR INFORMATION
Accepted for publication November 14, 2000.
We thank the parents of children who underwent cochlear implantation
and the professionals of Nottingham Paediatric Cochlear Implant Programme,
Nottingham, England.
From the Department of Otolaryngology, University Hospital, Queen's
Medical Center National Health System Trust, Nottingham, England.
Corresponding author: Sue Archbold, MPhil, Nottingham Pediatric Cochlear
Implant Programme, 113 The Ropewalk, Nottingham NG1 6HA, England (e-mail: sue.archbold{at}mail.qmouh-tr.trent.nhs.uk).
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