International Journal of Pediatric Otorhinolaryngology 143 (2021) 110656

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International Journal of Pediatric Otorhinolaryngology

journal homepage: www.elsevier.com/locate/ijporl

Challenges faced by parents when seeking diagnosis for children with

sensorineural hearing loss
Nur Fatihah Ainun Hamzah a, Cila Umat a, *, Deepashini Harithasan a, Bee See Goh b
a
Center for Rehabilitation & Special Needs Studies, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia
b
Department of Otorhinolaryngology-Head & Neck Surgery, Universiti Kebangsaan Malaysia Medical Centre, Kuala Lumpur, Malaysia

A R T I C L E I N F O A B S T R A C T

Keywords: Introduction: The Joint Committee of Infant Hearing (JCIH) recommended hearing screening by one month of
Parents age, diagnosis of hearing loss by three months of age, and intervention initiated by six months of age. In Malaysia
Professionals however, the age of diagnosis of hearing loss in children is relatively late. This study aimed to identify the
Childhood hearing loss
challenges faced by parents in seeking a diagnosis of hearing loss for their children.
Sensorineural
Challenges
Method: The study utilized a semi-structured interview with open-ended questions to obtain information about
parents’ experiences during the diagnosis period and their challenges when going through that process. In this
study, a total of 16 parents of children who were diagnosed with moderate to profound sensorineural hearing loss
and received intervention within three years at the time of the study participated. Ten of the children were
cochlear implant users, and six were hearing aid users.
Results: Thematic analysis was used to analyse themes generated from the data according to the study objective.
Four main themes and 17 subthemes were identified from this study. The four main themes were 1) Parents’
emotion; 2) Parental knowledge; 3) Others; 4) Profesional services. Challenges that parents faced often include
emotional behaviours such as feeling guilty and devastated during the diagnosis, lack of information-sharing
from healthcare givers, lack of knowledge on childhood hearing loss among parents, support from families,
seek for a second opinion, worry about others’ acceptance, longer time for diagnosis to confirm, late referral to
other related profesionals and no priority for the appointment.
Conclusion: Emotion is identified as the biggest challenge faced by parents in the process of diagnosis for their
children with hearing loss. Hence, management of parental emotion needs to be emphasized by health profe­
sionals as it influences the acceptance of parents towards their child’s diagnosis.

1. Introduction less improvement in the acquisition of the language as compared to

Good hearing is essential for the early years of the life of a child. The
most apparent effect of untreated childhood hearing loss is a significant
delay in speech and language acquisition [1] (WHO, 2010), communi­
cation skills, cognitive, and social development, and emotional problem
[2,3]. Studies showed that children who received intervention before six
months old, had a significant positive effect on the development of
language abilities and vocabulary quotients [4,5], more likely to have
age-appropriate communication skills to be in the mainstream educa­
tional setting, and have a higher rate of literacy [4,5]. Children who
were late engaged in the intervention showed lower language scores and
those who received an earlier intervention [5].
The Joint Committee of Infant Hearing (JCIH) recommended hearing
screening by one month of age, diagnosis of hearing loss by three months
of age, and intervention initiated by six months of age (1-3-6) [6].
However, in Malaysia, achieving the ‘1-3-6′ timeline model is far from
close [7–10]. Many children with hearing loss in Malaysia received late
diagnosis and, thus, delayed intervention [11]. For example, a study on
122 cochlear implant recipients has shown that the mean age for diag­
nosis of hearing loss is two years old [11]. In that study, the mean age for
hearing aid fitting was two years and three months old, and cochlear
implantation at three years and five months old [11]. These data are

Abbreviations: WHO, World Health Organisation; ENT, Ear, Nose, and Throat; JCIH, The Joint Committee on Infant Hearing.
* Corresponding author. Center for Rehabilitation & Special Needs Studies, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Jalan Raja Muda Abdul
Aziz, 50300, Kuala Lumpur, Malaysia.
E-mail address: cila@ukm.edu.my (C. Umat).

https://doi.org/10.1016/j.ijporl.2021.110656
Received 16 November 2020; Received in revised form 3 February 2021; Accepted 14 February 2021
Available online 19 February 2021
0165-5876/© 2021 Elsevier B.V. All rights reserved.
N.F.A. Hamzah et al. International Journal of Pediatric Otorhinolaryngology 143 (2021) 110656

typical of the clinic scenario in Malaysia, as most parents will bring in
their children for hearing assessment when the children are ‘not talking’
at two to three years of age.
The present study aimed to identify the challenges faced by a group
of parents in seeking early diagnosis and intervention for their children,
many of whom are parents of children with severe and profound hearing
loss who had undergone cochlear implantation. The insights from par­
ents will be useful for improving the management of hearing loss in
children. The reporting of this qualitative study will follow the 32-item
checklist Consolidated Criteria for Reporting Qualitative Studies
(COREQ) [12].
2. Methods
2.1. Research team and reflexivity
The study utilized a face-to-face interview, conducted by the first
author. As the interviewer, she had no prior relation to the parents who
participated in this study. The interviewer introduced herself to the
participants as a graduate student and that this study was part of her
Masters’s research degree program.
2.2. Study design
2.2.1. Theoretical framework
This study aimed to identify the challenges and experiences that
parents faced in the process of getting the diagnosis for their children
with hearing loss. It utilized an exploratory qualitative descriptive
methodology in which a semi-structured, open-question interview script
was developed for this study. Once data saturated, whereby no new
information was obtained, no further interviews were done.
2.2.2. Participant selection
The study used a stratified purposeful sampling approach. Some of
the participants were recruited when they came to the clinic for their
children’s clinic appointment. Some others were initially contacted via
telephone to obtain their permission to participate. The meeting venue
and time were arranged once the parents agreed to be involved in this
study.
A total of 14 mothers and two fathers (N = 16) were involved in this
study, all of whom were parents of children who were users of either
hearing aids, cochlear implants, or bimodal (hearing aid on one side and
cochlear implant on the other side). Table 1 shows the demographic
information of the participants, while Table 2 yields the characteristics
of their deaf and hard of hearing children. The parents ranged in age
from 29 to 56 years old (Mean age = 37.8 years, standard deviation, SD
= 7.3 years). Most of the families had two to three children, except for
two families who only had one child. All siblings had normal hearing.
None of the families reported a history of childhood deafness. The in­
clusion criteria for parents include:
(i) They have a child diagnosed with bilateral, sensorineural hearing
loss;
(ii) The diagnosis was made within the last three years at the time of
the study;
(iii) The child had already been fitted with a hearing device; and
(iv) The child was still under the follow-ups for speech-language
therapy.
Parents who could not read or converse in either English or Malay
were excluded. All participants gave written informed consent before
participating. Each parent was referred to as P1 to P16 in Table 1.
2.2.3. The setting of data collection
Most of the interviews took place at the audiology clinic (n = 12),
while three parents chose to have the interview done at home, and one
parent requested for a different location than the two. All interviews
were conducted between March to July 2019. The interview data
collected included parents’ demographics, information on the child with
hearing loss, and his/her family.
2.2.4. Data collection
The guided interview questions were piloted on four participants (i.
e., parents of children with hearing loss attending the clinic). The final
interview questions were as follows: 1) What happened that made you
think your child has hearing impairment? 2) Please share with us the process
of getting the diagnosis of hearing loss for your child. 3) How did you feel
when you receive the diagnosis?
Each interview session lasted between 30 and 45 min, performed in
Malay language, and recorded using an audio recorder to capture the
responses with the interview scripts aid or guideline prepared earlier. No
repeat interviews were done. Field notes were also taken during the
meeting for later analyses. As mentioned earlier, no further interview
was done when the data-saturated; that is, no new information was
obtained.
2.2.5. Data analysis
The audio-recorded interviews were subsequently transcribed. We

Table 1
Parents’ demographic details.
Participants Race Participants’ Age (years) Highest Education level Class of family income

1. P1 (Mother 1) Malay 30+* Degree Middle income

2. P2 (Mother 2) Chinese 30+ Degree Middle income
3. P3 (Mother 3) Malay 30+ Degree Upper income
4. P4 (Mother4) Chinese 30+ Degree Middle income
5. P5 (Mother 5) Chinese 40+ Master Upper income
6. P6 (Father 1) Chinese 40+ High school Middle income
7. P7(Father 2) Malay 40+ High school Lower income
8. P8(Mother 6) Chinese 40+ Diploma Upper-income
9. P9 (Mother 7) Chinese 30+ High school Middle income
10. P10 (Mother 8) Malay 20+ Degree Middle income
11. P11 (Mother 9) Malay 30+ Degree Upper income
12. P12 (Mother 10) Malay 40+ Diploma Lower income
13. P13 (Mother 11) Chinese 40+ Diploma Upper-income
14. P14 (Mother 12) Malay 20+ Degree Middle income
15. P15 (Mother 13) Chinese 30+ Degree Upper income
16. P16 (Mother 14) Malay 30+ Degree Middle income

Notes – (i) 30+ age denotes participant’s age was in his/her 30s (in between 30 and 40 years old.
(ii) Upper-income range above 9620 (MYR); Middle-income range between 4360 and 9619 (MYR); Lower-income range below 4360 (MYR)].

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N.F.A. Hamzah et al. International Journal of Pediatric Otorhinolaryngology 143 (2021) 110656

Table 2 Table 3
Characteristics of 16 children with hearing loss. Main themes and sub-themes and the percentage of responses from participants.
Mean Age (months) (Standard deviation, SD) Themes Sub-themes % of
responses
Chronological age 40.5 (21.7)
Age of identification 17.1 (16.9) Parents’ emotions Parents feeling guilty/devastated/ 87.5
Age of intervention 19.8 (16.2) confused
Characteristics N (%) Seeking for a second opinion 37.5
Gender Support from families/parents 37.5
� Boy 5 (31.3) support group
� Girl 11 (68.8) Worry about other people’s 31.3
Degrees of hearing loss acceptance/view
� Moderate to severe 1 (6.3) Parental knowledge on Parents did not suspect hearing loss 62.5
� Severe to profound 4 (25) childhood hearing loss Child did not consistently turn when 62.5
� Profound 11 (68.8) called
Types of hearing devices used Child was not responsive to sounds 50
� Bilateral Cochlear Implants (CIs) 6 (37.5) Child did not develop meaningful 43.8
� Bilateral Hearing aids (HAs) 6 (37.5) words/speech delayed
� Bimodal fitting (CI + HA) 4 (25) Others Hearing loss and other medical 18.8
Had Newborn Hearing Screening (NHS) conditions
� Yes 6 (37.5) Cultural Taboo 6.3
� No 10 (62.5) Professional services Lack of information-sharing/good 75.0
Other health issues explanation from professionals
� Yes Taking time to repeat tests to 37.5
� Down Syndrome, 1(6.3) confirm diagnosis
� Cerebral palsy, 1 (6.3) Late referral to other related hearing 37.5
� Waardenburg syndrome 1(6.3) health professionals
� No 13 (81.3) No priority appointment 31.3
Lack of knowledge among frontline 25
medical and health professionals
Lack of facilities for hearing test 25
Newborn hearing screening results 18.8

performed thematic analysis on the transcriptions to identify the chal­

lenges parents faced in the diagnosis process [13]. The researcher read suspected. But even my suspicion was wrong. I thought my child had
through the notes several times to familiarise with the content. The re­ speech delay. But it was hearing loss. That is where I felt guilty.
sponses were coded. In this study, transcripts were not returned to the
participants for comments. Three researchers in the group coded the
data. Initially, the coding was done individually by the three re­
ii. Seeking the second opinion
searchers. Then, they cross-checked their coding to reach a consensus on
the themes and sub-themes generated from similar codes. No software
Some parents did not believe their child has hearing loss and was still
was used in this analysis.
in the denial phase towards the diagnosis as there was no history of
childhood deafness in their families. So they decided to get a second
3. Results opinion on the child’s hearing, as illustrated below.

3.1. Challenges faced by parents P3: We were shocked because none in the family had hearing loss. So, at
the time when we heard that (diagnosis), we were shocked and cried.
Four (4) main themes and 17 subthemes have emerged from the Then, we went to find a specialist doctor, an ENT doctor, a consultant at
interview data. Table 3 shows the percentage of responses for each sub- (Centre) A. We were not satisfied. It’s common; it can’t be only once. We
themes of the main themes. need to find a second (opinion). So, we registered at (Centre) B. But when
tested, similar results.
3.1.1. Themes: Parents’ emotions
There were four subthemes: Parents feeling guilty/devastated/
confused; seeking for a second opinion; support from the families/par­
iii. Support from families/parents support groups
ents’ support group; and worry about other people’s acceptance/views.
After the child had been diagnosed with hearing loss, parents seek
i. Parents feeling guilty/devastated/confused
support from other parents and parents’ support groups to get more
information. Some parents mentioned that support from others was
One of the crucial issues arose in the process of getting the diagnosis
essential for them to raise a child with a hearing loss. They used that
was emotional issues. Some parents felt guilty as they were not aware of
platform to gain and exchange knowledge and information with each
their child’s development, and this could be helpful if they knew this
other.
problem much earlier. However, this happened due to their lack of
knowledge on signs and symptoms of hearing loss. Both fathers and P10: “My husband and I are strong enough maybe. I tried to find a
mothers reported feeling guilty, devastated, confused, and in denial support group. I searched the information through google or anything that
when the professionals delivered the hearing loss diagnosis. Some par­ I could do for my son next. From there, I found out HearMe … HearMe
ents expressed their difficulties in accepting the diagnosis. An example Malaysia. When I joined that group, I received a lot of information."
of the descriptions is as given below:

P4: I felt like … guilty because I was late. It took me two and a half years
to know that my child has hearing loss. To me, this is late because, as a iv. Worry about other people’s acceptance/views
mother, I should be alert to this problem. But I only knew it at two and a
half years. Even that was not me who knew it myself, the doctor told me. I

3
N.F.A. Hamzah et al.
Some parents had difficulties accepting their child’s hearing loss and
admitted to not wanting to be asked about it. Some of them were not
ready to share with others about the child’s condition.
P12: “Because I had difficulties in accepting, so I want (pause), I don’t
want other people to know, it is more difficult because I have to answer
their questions. I (pause), if possible, I don’t want to answer (their
questions)."
3.1.2. Themes: Parental knowledge
This theme was divided into four (4) subthemes: Parents did not
suspect hearing loss; child did not consistently turn when called, child
was not responsive to sounds, child did not develop meaningful words/
speech delay.
v. Parents did not suspect hearing loss
Majority of the parents lacked knowledge about hearing loss as they
did not suspect any hearing losses (62.5%) and did not know the signs
and symptoms of childhood hearing loss. Parent 1, for example, illus­
trated this:
“We also didn’t know that he has hearing loss. Then, when we started to
send him to a preschool as early as four years old. His teacher asked what
did we call him at home? R (Child’s name). Ohh … because when we
(teacher) called him, usually he did not turn, that’s what his teacher
said".
vi. The child did not consistently turn when called
About 62.5% reported that they started to suspect hearing loss when
the child did not consistently turn when called, as illustrated by the
following from Parent 14:
“Because of he/she … hmm … one thing he does not speak yet. Then,
when we call, the response is inconsistent. Sometimes he turns, sometimes
not".
vii. The child was not responsive to loud sounds
Some parents admitted seeing the child did not respond to loud
sounds, but still denied that their child might have hearing loss. An
example is as follows:
“Indeed he/she was not responsive to all the thunderstorms and lightning
out there, not startled to a loud door bang. But at that time, it was like
nothing … still denying that fact he/she has hearing loss.” – P4
viii. The child did not develop meaningful words/speech delay
Most parents were only aware and sought help when their child did
not develop meaningful words or have speech delay (43.8%). Parent 2,
for example, indicated that she only suspected the hearing loss when her
child did not talk. She remembered her older child was already speaking
at that age:
“Because at that time he was already two years plus, normally like his
elder sister, she could talk already at one-year plus. But this one /ee-ee-
aa- aa/".
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International Journal of Pediatric Otorhinolaryngology 143 (2021) 110656
3.1.3. Themes: Others
ix. Hearing loss and other medical condition
Having a child with other health conditions apart from hearing loss
was also contributing to the emotion. Parents had to prioritize. The
presence of other medical conditions had delayed the diagnosis and
intervention of the hearing loss as parents attended first to other ‘life-
threatening’ illnesses as described by Parent 6:
“Actually at 2–3 months old..we ….I.. myself … I noticed she had hearing
loss but well. At that time, we need to focus on her cardiac problem
(first).".
x. Cultural Taboos
Interestingly, a parent believed in cultural taboo in that the hearing
loss was due to something terrible that she did during the pregnancy:
“I thought about it a lot, every day it was in (my) mind. Every day (I feel)
sad. Thinking back on what (cause the hearing loss). Chinese had this
(taboo) during pregnancy. So, when I was pregnant, our mailbox (at the
front) was damaged. My husband used glue to glue something (at the
mailbox). People said I could not (do that). That could be why (my child’s
ears) are ‘glued’" – P11.
3.1.4. Themes: Professional services
There were seven (7) subthemes under this theme, which are as
follows.
xi. Lack of information-sharing
About one-third of the interviewed parents mentioned lack of
information-sharing from professionals after diagnosis was done, which
made parents felt so burdened. Examples are as follows:
“They didn’t tell us. They didn’t tell us okay, this is what you need to do
next, you see. But, emotionally, we were not ready to accept … even to go
to the next step because the news it’s just too much for us to absorb."- P5
xii. Taking time to repeat tests to confirm a diagnosis
Several parents reported that audiologists took some time to repeat
tests to confirm the diagnosis (37.5%). Parent 7 illustrates:
“Yes. Ok. The process of getting the diagnosis. They (the professionals)
gave another appointment, but the (new) appointment was a month after
that!"
xiii. Late referrals to other related hearing health professionals
Some parents thought they could have made a mistake in getting the
diagnosis confirmed, leading to late referrals to other health
professionals.
“We went to hospital B first because (hospital) A was too late (long
waiting appointment). We made a mistake, and we did not see the pedi­
atrician first, we went to see the ENT straight away … Haaa.. it was when
we went to see the ENT, the process was a bit slow” – P2
xiv. No priority appointment
N.F.A. Hamzah et al.
Some parents went to another center due to the long waiting for an
appointment, as indicated by Parent 12:
“The next appointment was in April. So in between (December to April), I
felt too long. That was why I decided to attend an event, to meet other
professionals and got an earlier appointment from this contact".
xv. Lack of knowledge among medical and health professionals
Some parents felt that professionals did not clearly explain their
concerns regarding their child’s hearing, speech, and language
development.
“I went to a clinic when she (my child) was one-year-old … then he/she
(the professional) said quite normal for a one-year-old not talking yet.
Hmmm … I can’t remember a doctor or a nurse … maybe a nurse … haa..
nurse. Then at one year and a half, I requested to see a doctor, but the
doctor said his/her child was also one year and a half and not talking
much as well … so, quite normal … but I … my instinct … I said I could not
wait anymore … OK. (The doctor) will write a referral letter, so … we
came here (Universiti Kebangsaan Malaysia clinic) straight away … " –
P14.
xvi. Lack of facilities for hearing tests
Some parents reported on lack of facilities to confirm the diagnosis.
Therefore, extra time was taken for getting an appointment at another
clinic (25%), as illustrated by Parent 1:
“When we were at XX, results were incomplete, and the doctor informed
that they didn’t have certain equipment (so could not complete the test).
And because of that, the doctor referred out".
xvii. Newborn hearing results
About 18.8% of the parents claimed they were not informed on the
newborn hearing screening results despite their babies going through
the program.
“He/she … he/she did not tell us about the result because of the A
(hospital) … they will give us a baby book. There is a hearing test result in
Fig. 1. Hypothetical framework illustrating challenges that parents faced in the process of getting diagnosis of hearing loss for their children.
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International Journal of Pediatric Otorhinolaryngology 143 (2021) 110656
the baby book. Either pass or fail … but they didn’t put the (newborn
hearing screening) results in” – P15.
3.2. Hypothesized theoretical framework
In general, our results revealed both internal and external factors,
mainly involving parents and professionals, contributed to the delay in
diagnosing these children. Majority of the parents (87.5%) involving
both fathers and mothers reported feeling guilty, devastated, confused,
and in denial when the professionals delivered hearing loss diagnosis.
Lack of knowledge about childhood hearing loss was considered as the
main contributor to the myriad of emotions parents went through in the
diagnosis process (within a circle – see Fig. 1).
The circles on seeking for a second opinion and support for parents
within the giant circle of Parental Emotions reflect the consequences of
their feelings following the diagnosis. The two-way dotted arrows be­
tween the parents’ and professionals’ circles suggest that these factors
were inter-related. Majority of the parents (75%) indicated lack of
information-sharing by professionals they consulted during this process,
leading to parents’ myriad of emotions and vice versa. The sub-circle
indicates other significant factors related to professional services that
could also suggest lack of knowledge among professionals for not
expediting the diagnosis of childhood hearing loss. These factors have
also led to parental emotions as they delayed the diagnosis. Fig. 1
summarizes the findings as a theoretical framework in understanding
parental challenges in getting the diagnosis of hearing loss for their
children.
4. Discussion
This study aimed to identify the challenges that a group of parents
faced in getting confirmed hearing loss diagnosis for their children,
using a qualitative study approach. Four main themes and 17 sub-
themes emerged from the data that hindered them from quicker diag­
nosis process and, subsequently, early intervention. These four main
themes and 17 sub-themes are embedded in two broader categories of
parents- and professionals-related.
The main challenge was the myriad of emotions that parents had
when going through the process of confirming the diagnosis. This result
was consistent with the findings from other studies [14–17]. Initial
parents’ reactions to an unpredicted diagnosis of hearing loss in their
N.F.A. Hamzah et al.
children include surprise, shock, upset, concern, and self-blame
[14–18]. It was challenging for parents to accept that their child have
hearing loss [15]. Thus, emotional support and clear guidance are
needed for families in the early stages of hearing loss diagnosis [14,16,
17,19]. The issue is whether professionals deal with parents’ emotions
following the diagnosis. Some parents in the current study seemed to
struggle quite significantly while searching for a second opinion and
further delaying immediate intervention. It is suggested to have advo­
cates among parents of hearing loss children [20] or various stake­
holders in the helping professions [21] to collaborate to manage a child
with hearing loss. Scharp et al [22] identified the characteristics of
hearing parents who could appear online to tell their stories about their
child with hearing loss as follow: advocates; resilient; obedient worriers
and ‘matter-of-fact’ narrators. Being advocates could help parents to
move forward easier.
Lack of knowledge among parents on childhood hearing loss
appeared to be the main reason for the parents’ emotional behavior (the
smaller circle within the giant circle of parental emotion illustrated in
Fig. 1. In this study, 62.5% of parents did not suspect that their child had
a hearing loss despite the majority of parents interviewed in this study
were parents of children with severe and profound hearing losses who
underwent cochlear implantation. This finding was consistent with that
reported by Wong et al. [23]. They studied the level of knowledge on
childhood deafness among mothers and mothers-to-be in Malaysia and
found that their knowledge level was low. Most of the parents in the
current study informed that no information was given during the preg­
nancy. Non-responsiveness to name-calling, non-responsive to loud
sounds that usually startled people, inability to produce meaningful
words are all primary symptoms of hearing loss. Yet, many parents
interviewed in this study did not know that these problems were related
to hearing loss until they received the diagnosis. Mukari et al. reported
that many Malaysian parents were unaware and did not suspect hearing
loss until their child reached an age when they were supposed to be
talking, yet they were not [24]. That was when parents started to seek
professional help. Our finding was consistent with Mukari et al. that lack
of awareness about congenital hearing loss contributed to delay in
diagnosis [24]. Several other studies have shown that parents’ under­
standing of hearing loss in children was associated with early identifi­
cation of hearing impairment [25]. To overcome this, providing
information on childhood deafness and the importance of early detec­
tion should be conveyed either during antenatal class or scheduled ap­
pointments after birth [26]. A nation-wide awareness campaign on
hearing loss in children as a neurodevelopmental emergency and
emphasis on the ‘listening brain’ should be initiated targeting parents or
parents-to-be.
Professionals also contributed to the challenges faced by these par­
ents. Most notable challenge was lack of information-sharing from
health professionals (75%). For example, some parents admitted that
they did not know about newborn hearing screening results. The finding
on breakdown in information transfer between parents and health pro­
fessionals is consistent with that reported in an earlier work [20]. Pro­
fessionals are responsible for explaining the results to parents as some
parents in the current study commented that they did not get a clear
explanation of hearing screening test results. Non-communication of
these test results played a role in delayed identification of hearing loss
[27]. Professionals involved in such instances have missed the oppor­
tunity to alert parents on the importance of having healthy hearing for
their child’s development. Early detection of hearing loss is advanta­
geous as it allows parents to have extra time to make decisions and
explore options for their habilitation [17]. Several studies have identi­
fied that professionals’ attitudes [27] and communication [28] with
parents affect parents’ views and perception on early detection of
hearing loss in young children.
In this study, several parents reported on general practitioners who
assured parents not to worry when the child did not develop speech and
language, suggesting the lack of knowledge among general health
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International Journal of Pediatric Otorhinolaryngology 143 (2021) 110656
practitioners themselves. Audiologists and Ear Nose and Throat (ENT)
surgeons who delayed in giving appointments to complete their
assessment reflecting hearing loss confirmation were not given a priority
in some of these practices. The finding that professionals also contrib­
uted to the delay in confirming hearing loss diagnosis in young children
was consistent with some earlier studies [17,29]. Parents experienced
difficulties such as late referral to other professionals, long waiting
appointment, and lack of facilities in some centers for testing that
contributed to delay in confirming the diagnosis. The findings on late
referral and long waiting dates are consistent with those reported by
Elpers et al. [27]. They found that difficulties in getting an appointment
was one of the parents’ concerns when seeking early identification, and
hence, self-initiative was made by parents to seek faster alternatives.
Some parents faced lengthy delays in diagnosis due to resources limi­
tation and need multiple sessions to confirm the diagnosis [17].
In this study, we also found that parents who have children with
hearing loss and other medical issues prioritize other life-threatening
conditions than hearing loss, contributing to the child’s delayed diag­
nosis and intervention. This finding was consistent with that found by
Whicker et al. [30], who did a comprehensive review of parental chal­
lenges in having children with hearing loss and other additional dis­
abilities. They concluded that these parents face unique challenges
related to family, professional, and child factors that could impact how
they manage their child’s hearing care. The difficulties affect the
decision-making and planning for each family. There was evidence that
the speech and language outcomes of children with hearing loss and
additional medical conditions correlated with hearing aid fitting at an
early age [31]. In that study, they found that better language outcomes
were associated with milder hearing loss, oral communication, higher
levels of cognitive ability and maternal education, and earlier device
fitting. Speech output accuracy was related to using verbal communi­
cation only. Therefore, parents need to attend to hearing loss as early as
possible despite having other medical issues.
We also found the issue of ‘cultural taboo’ that led to parental
emotional behavior and the difficulties of moving on following hearing
loss diagnosis. This finding is partly consistent with a study reported by
Adebayo et al. [32]. In that study, they interviewed 35 Nigerian women
to explore perinatal loss’s cultural understanding among these women.
It was found that socio-cultural taboo contributes to mothers’ grieving
due to miscarriages, stillbirths, and infant loss. The cultural norms and
practices contribute to despair [32], and commonly the silent burden
was left to mothers [33].
5. Conclusion
In general, parents’ emotional behavior, mainly due to their lack of
knowledge on childhood hearing loss, contributed to the delay in con­
firming the diagnosis and moving on after that. The most significant
inter-connected factor to parents’ emotions appeared to be a lack of
information-sharing from professionals. The insights obtained from
parents in the current study should improve the management of hearing
loss in children, particularly in Malaysia.
Authors contributions
CU, DH and GBS involved in conception and design of the study.
NFAH conducted the study and analysed the data. CU, NFAH and DH
involved in data analyses and interpretation of data. CU and NFAH
drafted the article and revising it following reviews from DH and GBS.
All authors read and approved the final manuscript for publication.
Ethics approval and consent to participate
The Universiti Kebangsaan Malaysia Human Research Ethics Com­
mittee (Reference no: UKM PPI/111/8/JEP 2017–709) approved the
study. All participants signed written informed consent before they
N.F.A. Hamzah et al.
participated in the study.
Funding
This study was part of a project entitled an Evidence-Based Approach
to Overcome Barriers to Early Identification and Intervention of Hearing Loss
in Children and supported by the Universiti Kebangsaan Malaysia,
Malaysia via the Research University Grant code GUP-2017-042.
Declaration of competing interest
The authors would like to declare that there is no conflict of interests
associated with this study.
Acknowledgement
We gratefully thank all parents who participated in this study. We are
also grateful to the staff of the UKM Audiology and Speech Sciences
Clinic and HearMe as a Parent-Support Group for providing information
on parents as the research participants.
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