Introduction
Cochlear implants (CIs) in deaf children with multiple disabilities have been the
object of study in major implant centers[1]
[2]
[3]
[4]
[5]
[6]
[7]
[8]
[9]
[10]
[11] because they represent 30–40% of CI cases,[3]
[7]
[8] and because their heterogeneity and complexity can lead to variable outcomes. Although
CIs have a limited impact on speech perception and language skills, they are reported
to have benefits in daily life. Originally, deaf children with multiple disabilities
were not candidates for CIs; in recent decades, they have been included,[12]
[13] increasing the number of children in this subgroup who now receive CIs. As a result,
there is an urgent need to develop adequate instruments to assess the impact of CIs
on this population, to support future indications and expectations, and to follow
up.[7]
[8]
[14]
Children with other associated handicaps are affected by cytomegalovirus (CMV), Usher
syndrome, motor and/or cognitive delays, meningitis after-effects, or various infections.
Some children may also have socio-emotional and interaction problems or autism spectrum
disorder (ASD). Jure et al[15] reported that 4% of deaf children have ASD, in comparison with 1% of the hearing
population. Donaldson et al[9] evaluated seven deaf children with autism who received CIs and concluded that oral
communication is not an objective to be achieved. Although only one child with mild
autism acquired speech after CIs, all the parents reported benefits, with five families
saying that they would recommend implants to others in the same situation. Donaldson
et al,[9] Wiley et al,[7] and Berrettini et al[8] have focused on evaluating the qualitative benefits of CIs. The latter two groups
have worked with multiple deficiencies, using questionnaires designed for this purpose.
They too have reported improvements in these patients' quality of life, regardless
of speech acquisition.
In a recent study on the qualitative post-implant benefits reported by the parents
of these patients, Mulla et al[16] made an interesting observation that his team delayed the decision to carry out
cochlear implantation on patients who had additional disabilities. Here, in our cochlear
implant group, this does not happen, which is not to say that CIs are always indicated
in cases that involve a poor auditory processing potential, serious neurological impairments
or others impediment issues.
According to Berrettini et al,[8] a third of the children who receive CIs at an early age may manifest other problems,
thus leading to frustration due to unmet expectations. We have observed such indications
in the present study, especially in relation to autism, and have followed these cases
particularly closely. However, there is no way to prevent children from being diagnosed
with such problems long after their implantations. When this happens, the use of CIs
can be greatly impaired, creating disharmony between parents and children due to poorly
achieved expectations, difficulties in accepting other treatments, and delayed benefits.
Whenever progress with CI is not as expected, the child should be immediately evaluated.[13]
[17]
[18] The need for an early diagnosis justifies the involvement of a team of psychologists
in CI teams to identify children with learning disorders, specific cognitive deficits
that have implications for rehabilitation, or nonverbal cognitive abilities that can
predict the child's language evolution. It is also important to note the child's learning
style and the emotional and behavioral commitments of both patients and parents, as
these can impact both progress and social adjustment and problem-solving skills.
Our objective in this work has been to develop a questionnaire in Portuguese to analyze
the subjective and qualitative benefits of CIs in children with multiple disabilities
from the parents' perspective.
Methods
This study was approved by the ethics committee under protocol number CAAE: 57300316.0.0000.0068.
All the participants signed an informed consent agreement.
Using the results presented by Donaldson et al,[9] Wiley et al,[7] and Berrettini et al,[8] we developed the Nasralla questionnaire ([Supplementary Material 1] and [2]), which is specifically addressed to the parents of implanted deaf children with
associated disabilities in our cochlear implant group, to ascertain and define the
benefits of CI for these children. The questionnaire has been adjusted to suit our
realities, based on our experience. We interviewed 14 families of children with multiple
disabilities who attended routine CI programs during the study collection period.
We collected their medical records, which contained information about associated disabilities,
other treatments, implant use time, and other constraints.
In the hearing and language categories, data were collected during the evaluation
of the CI fitting and classified using the categories of auditory perception proposed
by Geers,[19] as well as Garrido and Flores' category 7[20] and language categories[21] ([Table 1]).
Table 1
Categories of auditory perception and language
Categories of auditory perception (Geers, 1994)
|
CATEGORY 0 — Does not detect speech
|
CATEGORY 5 — Identification of words through recognition of the consonant
|
CATEGORY 1 — Speech detection without differentiating the stimulus
|
CATEGORY 6 — Recognition of words in open set. This child is able to hear words out
of context and extract enough phonemic information and recognize the word exclusively
through hearing.
|
CATEGORY 2 — Pattern of perception (differentiates words by supra-segmental traits).
|
CATEGORY 3 — Starting the identification of words. This child differentiates between
closed-set words based on phonetic information.
|
CATEGORY 7 — Open-ended word recognition. This child is able to hear words out of
context and extract enough phonemic information and recognize the word exclusively
through hearing. Especially in everyday situations (in the classroom, on the phone,
when listening to an alphabet song, when watching a TV program), the child always
understands, only by hearing. (Garrido and Flores, 2014)
|
CATEGORY 4 — Identification of words by means of vowel recognition. This child differentiates
between closed-set words that differ primarily in the sound of the vowel.
|
Categories of language (Bevilacqua et al, 1996)
|
CATEGORY 1 — This child does not speak and may present undifferentiated vocalizations.
|
CATEGORY 4 — This child builds sentences of four or five words, and begins to use
connective elements (pronouns, articles, prepositions).
|
CATEGORY 2 — This child speaks only isolated words.
|
CATEGORY 5 — This child constructs sentences of more than five words, using connective
elements, conjugating verbs, using plurals, etc. She is fluent in oral language.
|
CATEGORY 3 — This child builds sentences of two or three words.
|
The following components were included in our questionnaire:[1] patient identification,[2] associated deficiency,[3] time of surgery and activation,[4] whether the CI was unilateral or bilateral, sequential, or simultaneous,[5] daily device-use time, and[6] support between partners in the couple, from the extended family, or from professionals
who attended them. The following open-ended questions were also included:[1] what advantages the parents saw in CI,[2] the child's pre-CI and post-CI communication skills,[3] whether the patients had communicative intent, and[4] the status prior and post-implantation of either nonverbal and verbal communication
or sign language. These were later classified by legend for definition of communication
type as shown in [Table 2]. Their schooling, if they did other therapies and found difficulty in accessing
them, as well as general comments. In the closed questions, we examined the child's
social-emotional abilities by investigating his or her reactions, interests, behaviors,
temperament, family and social interactions, independence during activities of daily
life (ADL), adaptive potential, self-control, openness to experiences, and learning
styles. In closing, we asked about the parents' expectations regarding the CI intervention
and whether these were fulfilled. We also asked parents if they would recommend the
CI to another child under the same conditions. The questionnaire was published in
both Portuguese and English ([Supplementary Material 1] and [2]). The data were analyzed qualitatively.
Table 2
Communication pre- and post-cochlear implant (CI)
Communication Skills
|
Legend for definition of communication type:
|
• No intention of communication (NIC)
|
• Behavioral reaction (BR): cry, scream, facial expression, vocalizations, and gestures
|
• Behavioral reactions/signals (BRS): cry, scream, facial expression, vocalizations,
and gestures + signals
|
• Behavioral Reactions + a few clear words (BRW)
|
• Uses alternative communication (AC), such as drawings
|
• Oral/Signal (OS): combination of Brazilian Sign Language (LIBRAS) and clearly spoken
words
|
• Oral (O): only words, without gestures or signals.
|
|
PRE-CI
|
|
POST-CI
|
|
Communication Skills
|
N
|
%
|
N
|
%
|
NIC
|
3
|
21.4%
|
0
|
0%
|
BR
|
11
|
78.6%
|
5 (*2 with BR + AC)
|
35.7%
|
BRS
|
0
|
0%
|
2
|
14.3%
|
BRW
|
0
|
0%
|
1
|
7.1%
|
OS
|
0
|
0%
|
2
|
14.3%
|
LIBRAS
|
0
|
0%
|
2
|
14.3%
|
O
|
0
|
0%
|
2
|
14.3%
|
Results
The mean age of the patients at the time of the study was 6 years, 5 months old (minimum:
2 years, 5 months; maximum: 13 years, 6 months) and the average use of the implant
was 3 years, 6 months old (minimum: 9 months; maximum: 11 years, 1 month).
In the classification of the category of hearing and language, we observed different
responses among subjects. Nine of the 14 patients were unable to develop speech and
were only able to detect the sounds without discrimination. However, those patients
who managed to evolve in the hearing categories also observed an evolution in their
spoken language. ([Tables 3] and [4]).
Table 3
Sample demographics
Patients
|
Sex
|
Age at cochlear implantation
|
CI Brand
right/left side
|
Speech processor
|
1. MRMC
|
M
|
1 yr. 8 mos.
|
Freedom Implant Contour (L)
|
Freedom
|
2. RRM
|
M
|
3 yrs. 8 mos.
|
Freedom Implant Contour (L)
|
CP810
|
3. RSM
|
M
|
3 yrs. 8 mos.
|
Freedom Implant Contour (R/L)
|
CP 810
|
4. ALS
|
F
|
3 yrs.
|
Nucleus 24M/K (R)
|
CP810
|
5. IMM
|
F
|
1 yr. 3 mos.
|
Freedom Implant Contour (R/L)
|
CP810
|
6. MPM
|
F
|
1 yr. 7 mos.
|
Freedom Implant Straight (R/L)
|
Freedom
|
7. GML
|
F
|
2 yrs. 5 mos.
|
Freedom Implant Contour (R/L)
|
CP810
|
8. KLSB
|
M
|
3 yrs. 3 mos.
|
Freedom Implant Contour (R)
|
Freedom
|
9. CAS
|
F
|
4 yrs.
|
Freedom Implant Contour (R/L)
|
CP810
|
10. LCR
|
M
|
1 yr. 4 mos.
|
Freedom Implant Contour (R/L)
|
CP810
|
11. FSA
|
F
|
1 yr. 10 mos.
|
Freedom Implant Contour (L)
|
CP810
|
12. ABCA
|
F
|
5 yrs. 1 mo.
|
CI512 (R)
|
CP810
|
13. ESV
|
M
|
3 yrs. 7 mos.
|
Freedom Implant Contour (R/L)
|
CP810
|
14. LGFA
|
M
|
3 yrs. 11 mos.
|
Digisonic SP 20 eletrodes (L)
|
DigiSP/K
|
Mean
|
|
2 yrs. 8 mos.
|
|
|
Abbreviation: CI, cochlear implant.
Table 4
Auditory categories and language of sample
Patients
|
Period of CI use
|
Auditory categories
(Geers, 1994; Garrido and Flores, 2014)
|
Categories of Language
(Bevilacqua et al., 1996)
|
1. MRMC
|
4 yrs. 11 mos.
|
1
|
1
|
2. RRM
|
9 mos.
|
1
|
1
|
3. RSM
|
1 yr. 5 mos.
|
1
|
1
|
4. ALS
|
9 yrs. 8 mos.
|
5
|
4
|
5. IMM
|
1 yr. 2 mos.
|
1
|
1
|
6. MPM
|
3 yrs. 2 mos.
|
3
|
3
|
7. GML
|
11 yrs. 1 mo.
|
7
|
5
|
8. KLSB
|
2 yrs. 3 mos.
|
1
|
1
|
9. CAS
|
1 year
|
2
|
2
|
10. LCR
|
3 yrs.
|
4
|
3
|
11. FSA
|
4 yrs. 4 mos.
|
1
|
1
|
12. ABCA
|
3 yrs. 7 mos.
|
1
|
1
|
13. ESV
|
1 yr. 2 mos.
|
1
|
1
|
14. LGFA
|
2 yrs. 4 mos.
|
1
|
1
|
Mean
|
3 yrs. 6 mos.
|
|
|
Abbreviations: mo(s), month(s); yr(s), year(s).
Of the 14 patients, half had been implanted unilaterally by the Brazilian public health
system, which, at that time, offered only one implant to each patient. Those with
bilateral CI had been treated by the private health system.
As for the etiology of deafness, more than half of the patients had prematurity and
CMV, as well as delayed neuro-psychomotor development (DNPD) and ASD, which are more
frequent in cases of associated handicap ([Table 5]).
Table 5
Sample distribution of cochlear implant side, etiology, and associated handicaps
Cochlear implant side
|
N
|
%
|
Unilateral
|
7
|
50%
|
Simultaneous bilateral
|
5
|
35.7%
|
Sequential bilateral
|
2
|
14.3%
|
Etiology
|
N
|
%
|
Prematurity
|
5
|
35.7%
|
Unknown
|
4
|
28.6%
|
CMV
|
3
|
21.4%
|
Rubella
|
1
|
7.1%
|
Sepsis and perinatal events
|
1
|
7.1%
|
Associated handicap
|
N
|
%
|
Delayed neuro-psychomotor development (DNPD)
|
5
|
35.7%
|
Autism spectrum disorder (ASD)
|
4
|
28.6%
|
Global developmental delay (GDD)
|
2
|
14.3%
|
Attention deficit and hyperactivity disorder (ADHD)/emotional
|
1
|
7.1%
|
Cerebral palsy (CP)
|
1
|
7.1%
|
Visual/cognitive and emotional problems
|
1
|
7.1%
|
Abbreviations: BR, Behavioral reaction; BRS, Behavioral reactions/signals; O, Oral.
All but two of the children included in this study used their implants more than 75%
of the time. Of these two, one was identified with autism, with motor and severe cognitive
delays; this child was bothered by the sound, a problem that is now being addressed
in therapy. The other child was identified with visual and emotional problems in addition
to relational difficulties with the mother.
All the interviewed parents had received help and support from a partner, their extended
family, and from professionals who attended them. In addition to regular speech processor
fitting sessions at the CI group, approximately once every 3 months or according to
individual need, the patients underwent other therapies, including speech therapy,
equine therapy, physiotherapy, occupational therapy, and emotional and psychopedagogical
therapy. When asked whether it was difficult taking their children to these therapies,
three mothers reported problems due to their children's behavior. When asked about
communication skills, many parents claimed that their children became part of the
world after their CI, suggesting significant improvement. The results are summarized
in [Table 2].
The demographic data and communication details of children with bilateral and unilateral
CI are summarized in [Tables 6] and [7].
Table 6
Patients with bilateral cochlear implant (CI)
Patients
|
Impairment
|
Age
|
CI Time
|
Pre-CI
|
Post-CI
|
CAS
|
Attention deficit hyperactivity disorder (ADHD) / emotional
|
5 yrs.
|
1 yr.
|
Gestures
|
Speaks words / a phrase / little comprehension (O)
|
LCR
|
Delayed neuro-psychomotor development (DNPD) / cleft lip palate / emotional
|
4 yrs. 4 mos.
|
3 yr.
|
Gestures
|
Speaks little / gestures /+ interested / express emotions (BRW)
|
MPM
|
DNPD / ADHD
|
4 yrs. 9 mos.
|
3 yrs. 2 mos.
|
Screams / echolalia
|
LIBRAS later speaking (OS)
|
GML
|
DNPD / partial vision / equilibrium
|
13 yrs. 6 mos.
|
11 yrs. 1 mo. / 7 yrs.
|
Without communicative intention
|
Speaks after 2nd implant (O)
|
RSM
|
Autism spectrum disorder (ASD) / ADHD
|
5 yrs. 3 mos.
|
1 yr. 5 mos.
|
Spoke until 1 yr 6 mos
|
Vocalizations and gestures (BR)
|
IMM
|
DNPD and mild cognitive / cerebellar lesion
|
2 yrs. 5 mos.
|
1 yr. 2 mos.
|
Gestures
|
Vocalizes /+ active (BR)
|
ESV
|
Global developmental delay (GDD)
|
4 yrs. 9 mos.
|
1 yr. 2 mos.
|
Gestures
|
Signals / LIBRAS school / vocalizes imitating speech (BRS)
|
Abbreviations: BR, behavioral reaction; BRS, behavioral reactions/signals; CI, cochlear
implant; mo(s), month(s); O, oral; OS, oral/signal; yr(s), year(s).
Table 7
Patients with unilateral cochlear implants (CI)
Patients
|
Impairment
|
Age
|
CI Time
|
Pre-CI
|
Post-CI
|
MRMC
|
Autistic spectrum disorder (ASD) (mild), diagnosed post-3 years of CI / Attention
deficit hyperactivity disorder (ADHD)
|
6 yrs. 7 mos.
|
4 yrs. 11 mos.
|
Gestures
|
Brazilian Sign Language (LIBRAS) / shouts / loud sound disturbs (LIBRAS)
|
RRM
|
ASD (serious motor and cognitive delay)
|
4 yrs. 7 mos.
|
9 mos.
|
Used mother's hand
|
Babbles / looks / interacts +/ remove process (BR)
|
ALS
|
ASD (mild) with mild motor and cognitive delays
|
12 yrs. 8 mos.
|
9 yrs. 8 mos.
|
Gestures / screams
|
Speaks / LIBRAS / does not like noise (O)
|
KLSB
|
Visual/emotional/cognitive problem
|
5 yrs. 6 mos.
|
2 yrs. 3 mos.
|
Gestures / touches / unconnected
|
LIBRAS / gestures / vocalizes /+ aware (LIBRAS)
|
FSA
|
Delayed neuro-psychomotor development (DNPD) and cognitive / neurological problems
|
6 yrs. 2 mos.
|
4 yrs. 4 mos.
|
Without communicative intention
|
Babbles / screams /+ attentive and agile (BR)
|
ABCA
|
Cerebral palsy (CP)
|
8 yrs. 8 mos.
|
3 yrs. 7 mos.
|
Without communicative intention
|
Vocalizes / gestures / drawings (BR)
|
LGFA
|
Global developmental delay (GDD)
|
6 yrs. 3 mos.
|
2 yrs. 4 mos.
|
Pointed / vocalized
|
Signals / screams / imitates lip movements (BRS)
|
Abbreviations: BR, behavioral reaction; BRS, behavioral reactions/signals; mo(s),
month(s); O, oral; yr(s), year(s).
Among those with bilateral implantation, we observed better speech development and
less impact from additional impairments. In particular, four children developed some
speech after implantation, with two children with 3 years and 2 months and 11 years
and 1 month of stimulation exhibiting no speech problems. The first of these patients,
who was hyperkinetic and repetitive in speech and behavior, acquired speech after
learning Brazilian Sign Language (LIBRAS, in the Portuguese acronym). In the case
of the latter patient, the second implantation was performed 4 years after the first
implant, and the patient's mother attributed this child's development of oral language
to the second implant. These two patients were precisely those who had the most severe
impairments and exhibited the most advanced motor recovery after CI, which contributed
to their access to sound, as previously reported by Azema and Virole.[22] Of the two patients with emotional problems, one spoke insufficiently, articulating
only a few words and using gestures to communicate. This child, who preferred to express
himself through emotions, regressed significantly in his psychic development. The
other patient expressed a certain refusal to speak. In this case, underdeveloped oral
language and barriers caused by the denial of deafness and maternal overprotection
held back oral development, which did not achieve its full potential. Two other children
vocalized after 1 year and 2 months of stimulation. One of them, who used gestures
at 5 years of age and who had been diagnosed with ASD, spoke in therapy but did not
talk at home. This patient became more attentive to the environment after CI, but
still failed to make eye contact, recognize names, or react to sounds. The family
does not stimulate this child and has reacted badly to the diagnosis, in part because
the parents feel guilty that his attention deficit hyperactivity disorder (ADHD) may
be due to the fact that they are cousins. Despite only vocalizing, one child with
a history of extreme prematurity, mild cognitive impairments, and a cerebellar lesion
has shown greater interest in everything and is currently learning LIBRAS at the mother's
initiative. The last child in the study had a marked global developmental delay (GDD)
but began to signal and vocalize—imitating speech—after only 1 year and 2 months of
stimulation and learning LIBRAS at school.
Among the patients with unilateral implants were seven children with more severe additional
disabilities. Six of them had received stimulation for a period ranging from 9 months
to 4 years and 11 months, and one had spent 9 years and 8 months receiving auditory
stimulation through a CI. The latter, a very isolated girl diagnosed with ASD (mild)
with mild cognitive and motor delays, spoke after 5 years of stimulation and uses
LIBRAS. Interestingly, the whole family of this patient has few social contacts, even
among themselves. Her mother does not consider her a speaker, hopes that she will
learn only sign language, and exhibits obvious denial of how far her daughter has
progressed. Another patient with ASD, who uses LIBRAS and shouts to make himself noticed,
was diagnosed 3 years after the implantation, which greatly affected his progress
and disturbed his mother, who still does not accept his diagnosis and exhibits very
frustrated expectations. The patient started to look at people 4 years after implantation
and started LIBRAS at 4 years and 6 months after implantation; he has now had 4 years
and 11 months of stimulation. The third autistic case was more serious, involving
a younger child (4 years, 7 months old), with only 9 months of stimulation. This patient
interacted and babbled more, exhibited improved eye contact, recognized his own name,
and did not react to sound (improving). The patient, who has visual, cognitive, and
emotional problems, for feeling rejected by the mother, came with his father. He reacts
very badly to his mother. Both father and son use LIBRAS to communicate, a language
that the mother does not know or accept because she wants her child to speak, probably
to assuage her feelings of guilt over her son's deafness. Two other cases, one with
cerebral palsy (CP) and the other with marked DNPD and cognitive impairments, had
no communicative intention but began to communicate. The patient with CP showed speech
comprehension and vocalization and made use of alternative forms of communication.
The other patient (implanted for 4 years and 4 months) babbled, was more attentive
and agile, and used screams. A patient with GDD with 2 years and 4 months of stimulation
made some signs, screamed, and imitated lip movements.
Of the four autistic cases (both unilateral and bilateral), one spoke and used LIBRAS
5 years after implantation; one uses only LIBRAS at 4 years and 6 months post-CI,
and the other two are interacting more at 9 months and 1 year and 5 months post-CI.
Despite the regrets, unmet expectations, and all the reported issues, which undoubtedly
impacted the outcomes and benefits of implantation, the main and most exciting revelation
of this study came through cases involving more serious conditions, when the mothers
of several patients revealed that the implants made their children happier. Indeed,
Steven et al,[23] who worked specifically with implanted deaf patients with CP, have reported that
small audiological benefits can have great repercussions in the most severe cases,
positively impacting the quality of life. The authors stress that other parents have
more independent children with better motor skills.
In general, parents have reported that their children have become more communicative
and sociable, adapting better to their environments.
In the present study, the best socio-emotional abilities appeared because of the children's
reaction to sound, which benefited 84% of them, with 56% (from 21–77%) demonstrating
increased name recognition and 28% (from 56–84%) demonstrating increased eye contact.
The reaction to sound and self-recognition provided emotional benefits, enabling the
children to enjoy pleasures such as those provided by music (from 7–63%), more adherence
and attention to therapies (from 21–63%), and school activities (100%). We also observed
improved interpersonal contact, as they answered 70% of the verbal questions, thus
making them more communicative. Their increased ability to communicate desires and
needs went from 49% pre-CI to 84% post-CI. They found it easier to comprehend speech
than to express themselves.
Ocular contact, which was reported in 84% of the children after CI, from an initial
56%, brought many social benefits, such as becoming interested in objects (from 21–70%),
facilitating play with other children (from 56–91%), showing initiative in play (from
49–84%), adapting to the family routine (from 28–84%), promoting oral language learning
(35%), and using sign language (14%), and helping them to socially adapt to new situations
(from 35–56%) with positive reactions.
Their greater interest in school (100%) compared with home (70%) can be attributed
to the emotional and behavioral issues already reported.
In addition to the skills that were less susceptible to change, including learning
styles that were keeping them uncreative and incurious (from 21–38%), we observed
a few changes in temperament, involving traits of kindness, extroversion, or emotional
instability (from 14–28%).
Of the 14 parents who answered the questionnaire, eight said their children had done
better than expected, and even the remaining six, who were frustrated with the results,
saw some benefits. Indeed, all 14 parents said that they would recommend CIs. It was
interesting to observe the parents who were frustrated: one was the mother who blamed
herself for her child's deafness, and who had difficulty communicating with her child
because she did not accept sign language and wanted her to speak instead. The others
were all mothers of children with ASD: one was the mother of a child who was diagnosed
3 years after cochlear implantation, while two did not accept their children's diagnoses
and expected more verbal fluency. Both the parents of children with emotional problems
and autistic children are frustrated with the results.
The comments made by parents whose expectations were met or exceeded clearly indicate
the importance of accepting the results and feeling satisfaction. Examples of such
comments include: “The doctor said that he would listen, but not speak, but he ultimately
spoke!”; “Maybe he would not listen, but then he heard with both ears ... and spoke!”;
“Like those who were aware of difficulties and saw benefits ...”; and “No one gave
hope. We knew he would not speak. But it helped a lot.”
The sixth mother, who was frustrated with the outcome of the cochlear implantation,
was the mother of the GDD patient whose outcome seems to be most disappointing because
of her stimulus, effort and ambition, yet, she still sees benefits.
Discussion
The questionnaire was developed to capture the qualitative benefits of cochlear implantation,
as perceived by parents and manifested in their children's daily lives. For this reason,
we have created the first instrument in our country that is appropriate for our population.
To create it, we adapted the ideas of Donaldson et al 2004, Wiley et al 2005, and
Berretini et al 2008 (7–9), as described in their studies.
The parents' overwhelmingly positive responses to the invitation to be interviewed,
and the joy with which they provided information revealed their satisfaction with
the CI. Simply interviewing the parents gave the interviewer much pleasure; it gave
them an opportunity to talk about their joys and to share great emotions. The interviews
themselves helped some parents become more aware of their child's progress and reflect
on issues of family dynamics that were compromising it. This further indicated the
need for a psychological follow-up to identify barriers to language acquisition. The
early age at which these children have surgery does not allow for adequate expectations,
particularly in cases of ASD. This has a negative impact on parents because they are
not prepared to accept the diagnosis.
Many children with disabilities make progress following cochlear implantation, as
previously reported.[7]
[9] Some reports have found that they make less progress than children without disabilities,[24] mainly in the area of speech development, which is consistent with our present findings.
It was clear in our study that the CI led to a better quality of life for the whole
family, despite the slow development of oral language, which was better in children
who were implanted bilaterally. We noted that the parents' perception of qualitative
benefits was independent of the children's development of oral or gestural language;
this confirms the findings of Berrettini et al.[8] All relational disjunctions were perceived by the children, who reacted to them
with behavioral or more serious symptoms. However, even in these cases, there was
a perception of relational benefits both at home (84%), with better adaptation to
routines, and at school, where the children found more satisfaction (100%). In some
cases, this finding revealed difficulties in the relationship between children and
parents. In some cases, the parents' acceptance of their children's limitations[13] compromised those children's outcomes and behaviors. Berrettini et al,[8] Robertson,[18] Meinzen-Derr et al,[25] and Edwards[13] reported that early diagnosis helps with setting expectations about and acceptance
of diagnoses of autism and other serious impairments, favoring development and adherence
to the treatment. This did not occur in six of our patients, causing their mothers
to feel frustrated about their children's real potential.
Two of the children used their CI less than 75% of the time. One patient, who had
autism, was disturbed by the processor. Indeed, Robertson[18] also referred to this issue, arguing that it was necessary to consider hearing intolerance
and to measure sensory stimuli in such cases. The other patient was a very hectic
child, who had relationship problems with his mother. Zaidman-Zait[26] described a similar case of interpersonal difficulties with a mother, caused by
insufficient communication, which caused stress within the family. Schoepflin et al[27] associated such situations with a poor use of CI that held back the child's recovery.
Overall, the results were better than expected; parents coping with their children's
serious problems were happy with the decision to carry out cochlear implantation.
They even recommended the procedure to other parents whose children had the same conditions,
as reported in Wiley et al.[7]