Keywords
hearing - deafness - speech-language pathology - pediatric nursing
Introduction
It is a global consensus that hearing loss of early childhood onset negatively impacts
the child's development.[1]
[2] Early diagnosis of hearing loss allows phonoaudiologists to take educational and
clinical measures to minimize the effects of such loss.[1]
[3]
A speech-language therapy referral geared to the specific needs of the child, such
as hearing rehabilitation through electronic devices, as well as to the development
of oral, written, or sign language may promote more effective participation of these
children in different social contexts (such as with family, at school, at work and
in the community at large) when performed in early childhood.[4]
In 2010, the Brazilian government approved Federal Law number 12.303, which mandates
Newborn Hearing Screening (NHS) in newborns before hospital discharge, to ensure effective
access to hearing health programs. Nonetheless, it is worth noting that when the NHS
results present inconsistencies, babies should be re-evaluated (retested).[5]
Given that deafness incidence is higher in children with risk factors, according to
the recommendations of the Joint Committee of Infant Hearing (JCIH), audiological
monitoring is essential for all at-risk infants presenting high-risk indicators for
hearing loss (HRIHL), starting with NHS. This also applies to infants at risk of neural
conduction disorders and/ or dysfunction of the auditory pathway in the brainstem,
other hearing disorders, and/ or delayed development of speech and language.[3]
Currently, it is up to the speech-language therapist who performs the NHS to guide
the family towards retesting, thereby ensuring accurate and early diagnosis of deafness
and allowing full treatment to the child.
Despite all the progress already achieved in the field, Brazilian studies show that
the retesting compliance rate is low, which undermines the effectiveness of NHS programs.[2]
[6]
[7]
[8]
[9]
[10]
In this regard, we emphasize the need to implement actions developed by multidisciplinary
teams that aim to sensitize the baby's mother and other relatives to the importance
of following up the NHS with a retest. In this context, it is worth noting the relevance
of actions undertaken by speech-language therapists and nurses, both being directly
involved with the postpartum period. It is especially important that nurses work directly
with those under their care, spending significant time in contact with patients hospitalized
due to illness or childbirth.[11] According to COREN,[12] nurses, as educators and professionals who work directly in maternal and child health,
can contribute to raising awareness and guiding the people involved in processes where
health monitoring occurs.
Considering the above, the present study aims to identify and analyze determining
reasons for non-compliance with the auditory retest, according to a group of mothers
of children with risk factors for hearing loss.
Materials and Methods
The Human Research Ethics Committee from the authors' institution approved this study,
under registration number 830071, according to resolution 466/2012.
This is a quantitative cross-sectional study conducted in a public maternity hospital
in Curitiba, in the state of Paraná, during the sample period from July to December
2013.
The research sample consisted of 60 mothers of newborns with HRIHL who did not attend
the hearing retest appointment. All newborns in this sample should have had audiological
monitoring for one year based on risk indicators. The inclusion criteria of the mothers
in the study were being over the age of 18 years, having babies born between July
and December 2013, having not attended the NHS retest, agreeing to participate in
the study, and signing the consent form. Excluded from the study were mothers under
18 years of age and those who were not able to understand the proposed questionnaire.
It is routine in the women and newborn healthcare unit of Curitiba to actively search
for mothers who do not follow the regulations established for monitoring at-risk infants.
Thus, mothers who composed the sample for this study received a phone call reminding
them to return to the Unit to perform various procedures, including the auditory retest.
On the day set for the evaluation, after receiving guidance on the purpose of the
research and its protocols, the interviewer invited the mothers to participate in
the study.
Next, the mothers answered a semi-structured questionnaire that collected data on
their age profile, marital status, educational level, knowledge of NHS, and reasons
for non-compliance with the retest.
The level of knowledge about NHS and the reasons for non-compliance were cross-referenced
with some variables: mother's age, education level, and marital status.
Then, the answers were subjected to a statistical Chi-square test for a level of significance
with p values < 0.05, which were considered statistically significant.
Results
The maternity ward where this study was developed is a leader in the city of Curitiba
in caring for high-risk pregnancies. Between the months of July and December 2013,
the period for data collection, 733 babies were born in this hospital, all with some
HRIHL.
Before hospital discharge, all infants underwent a hearing screening and were expected
to return for retesting within 15 days. According to the hospital data, 89% of the
babies returned for retesting.
Of the 82 (11%) mothers who did not return with their infants, 60 were selected for
the study as they fell within the listed inclusion criteria. [Table 1] shows the socio-demographic characteristics of the sample.
Table 1
Description of sample according to age, education level, and marital status (N = 60)
|
Variable
|
Frequency
|
%
|
|
Age
|
|
|
|
Under 20 years
|
7
|
11.67
|
|
20 to 29
|
25
|
4.67
|
|
30 to 39
|
21
|
35.00
|
|
40 years older
|
7
|
11.67
|
|
Education level
|
|
|
|
Primary incomplete
|
13
|
21.67
|
|
Primary
|
18
|
30.00
|
|
High School
|
28
|
46.67
|
|
College
|
1
|
1.67
|
|
Marital status
|
|
|
|
Single
|
37
|
61.67
|
|
Married
|
18
|
30.00
|
|
Divorced
|
4
|
6.67
|
|
Widowed
|
1
|
1.67
|
Regarding the level of mothers' knowledge regarding NHS, we observed that: 38 (63%)
mothers did not know about the infant hearing test or NHS; 100% of the sample believed
their child could hear well; 17% had a close relative with hearing loss and knew its
harmful effects; 90% reported that they did not receive information on NHS during
the prenatal period; 90% knew that their infant had undergone NHS before hospital
discharge. but only 38% reported knowing the test result; 62% of mothers did not know
who the health professional was who performed the examination on the child; 91% of
mothers received guidance on doing the hearing retest, but 90% did not know why it
should be done.
Considering that none of the interviewed mothers took their infants to the hearing
retest, we investigated the reasons for non-compliance. [Table 2] lists the most frequent responses.
Table 2
Reasons for non-compliance with NHS retest (N = 60)
|
Variable
|
Frequency
|
%
|
|
Forgot appointment
|
18
|
30.0
|
|
Did not know
|
12
|
20.0
|
|
Mother's health problems
|
05
|
8.3
|
|
Health unit on strike
|
04
|
6.6
|
|
No one to accompany them
|
04
|
6.6
|
|
Family health problems
|
03
|
5.0
|
|
Transportation problems
|
03
|
5.0
|
|
Too much information upon discharge
|
02
|
3.3
|
|
Bad weather
|
02
|
3.3
|
|
Scheduling conflict
|
02
|
3.3
|
|
Death in the family
|
01
|
1.6
|
|
Could not miss work
|
01
|
1.6
|
|
Lack of time
|
01
|
1.6
|
|
Personal issues
|
01
|
1.6
|
|
Baby's health problems
|
01
|
1.6
|
|
Total
|
60
|
100
|
Abbreviations: NHS, newborn hearing screening.
The majority of the sample reported not knowing what the infant hearing test was (63%)
and most of the sample forgot about the retest or claimed to have forgotten the date
(50%). Thus, we analyzed the relationship between maternal age, education level, and
marital status as variables. We applied the Chi-square test and [Tables 3], [4], and [5] describe the results.
Table 3
Knowledge about NHS and reasons for non-compliance in relation to mother's age
|
Variable
|
Answer
|
Age (years)
|
p
|
|
< 20
|
20–29
|
30–39
|
≥ 40
|
|
Do you know what the NHS is?
|
yes
|
3
|
9
|
8
|
2
|
0.8861
|
|
Did you forget the retest appointment?
|
yes
|
4
|
4
|
8
|
2
|
0.2326
|
|
Were you unaware of the retest?
|
yes
|
1
|
5
|
4
|
2
|
0.3651
|
Abbreviations: NHS, newborn hearing screening.
Table 4
Knowledge about NHS and reasons for non-compliance in relation to mother's marital
status
|
Variable
|
Answer
|
Marital Status
|
p
|
|
Single
|
Married
|
Divorced
|
Widowed
|
|
Do you know what the NHS is?
|
yes
|
16
|
3
|
3
|
0
|
0.1800
|
|
Did you forget the retest appointment?
|
yes
|
11
|
5
|
1
|
1
|
0.1573
|
|
Were you unaware of the retest?
|
yes
|
7
|
5
|
0
|
0
|
0.2499
|
Abbreviations: NHS, newborn hearing screening.
Table 5
Knowledge about NHS and reasons for non-compliance in relation to mother's education
level
|
Variable
|
Answer
|
Education Level
|
p
|
|
Primary Incomplete
|
Primary Complete
|
High School Incomplete
|
High School Complete
|
|
Do you know what the NHS is?
|
yes
|
6
|
6
|
1
|
9
|
0.2581
|
|
Did you forget the retest appointment?
|
yes
|
6
|
4
|
0
|
7
|
0.2993
|
|
Were you unaware of the retest?
|
yes
|
3
|
4
|
0
|
5
|
0.7953
|
Abbreviations: NHS, newborn hearing screening.
Discussion
The NHS program aims at early detection of hearing loss in children and directing
toward appropriate treatment to minimize the effects of deafness. Thus, to achieve
satisfactory results, it is essential to have the families' adhesion.[8]
During the period for the data collection for the study, 733 babies with HRIHL were
born in the maternity ward and 89% returned for retesting at the scheduled date, which
is considered high when compared with similar studies.[8]
[13]
[14]
The predominant age distribution of the sample was 20–39 years old, however 23% of
mothers were outside of this range (older than 39 or younger than 20). Pregnancies
at the extremes of reproductive life of women have higher risk of adverse outcomes
and complications during pregnancy and childbirth, as well as during the neonatal
period.[15]
Regarding level of education, most mothers (51.67%) had only a primary level of education.
One study that researched the reasons for non-attendance of the retest by mothers
and their newborns showed a series of reasons, among which was low parental education
levels as one of the key factors that limited the mothers' understanding of the importance
of NHS.[16]
With regard to marital status, 70% of the sample at the time of hospital discharge
did not live with a spouse. In one study,[10] authors examined the marital status of mothers in a database of 27,817 live births
at a maternity ward, and they concluded that the probability of retest non-compliance
for single mothers was 1.4 times higher than those who lived with a spouse.
On matters relating to knowledge about NHS, the number of mothers who did not know
about the procedure was considered high – a fact confirmed in other research,[15] where only 34% of mothers reported knowing about NHS during pregnancy, from a total
of 1022 mothers surveyed.
In our study's sample, 17% of mothers reported having someone in the family with hearing
loss, and yet the mothers still did not return for the hearing retest. Among the possible
reasons for such a result, is that a mother's fear of obtaining confirmation of her
child's hearing problem in the retest, considering the possibility of such loss to
be hereditary. It is worth noting that studies[8] point to the recurrence of resistant attitudes as part of a process of denial, and
only later will come acceptance of the fact that the child has organic and/ or sensory
impairment.
Despite the high rate of ignorance, 90% of mothers reported knowing that their child
had undergone a hearing test before hospital discharge. However, over 60% were unable
to provide the test results. The distribution of educational material can act not
only to help mothers recognize the test's importance, but also to arouse greater interest
in parents about the hearing health of their children.[10] In addition to informative actions such as orientation with health service policies,
the need for actions focused on health education is emphasized. These actions should
be developed by professional teams aimed at encompassing the different aspects and
dimensions involved in health and disease. In this sense, the work of nurses is important.
It is important to note that 62% of respondents did not know who the professional
was that performed the NHS on their baby. It is necessary that health professionals
promote dialogical relations to listen and engage the mothers, so that it is possible
to exchange knowledge and empower the patient. This is one of the conditions needed
for the mother to assume the responsibility for their child's health care and act
in a more constructive manner with respect to it.
When asked about the reason that led them to fail to return for the hearing retest,
30% reported having forgotten and 20% said they had no knowledge of it. Researchers
in another study[7] with similar data indicated that these attitudes are directly related to the absence
of appropriate guidance given to mothers and caregivers, and to awareness of the damage
that hearing loss can cause children.
The available literature[9]
[13]
[14] explains that an increase in compliance depends on some strategies that encourage
greater participation in the Program. Among these strategies, is health care professionals
working to guide mothers and parents of newborns, as well as monitoring the families
of babies that failed the NHS.
Ignorance over the need for retesting, as pointed out in this survey, is mirrored
in publications on the topic.[8]
[9]
[13] According to the authors, there is a contradiction between what health professionals
say they tell mothers about the NHS, and what mothers report hearing from the professionals.
While the multidisciplinary team reported knowing about the importance of early detection
of hearing impairment and advising mothers about NHS, most mothers claimed they had
not received any information during their pregnancy or during their stay in the maternity
ward. The authors understand the difficulty may be that mothers receive a lot of new
information about examinations and their newborns, and they are not always able to
assimilate this information because mothers perceive only what they can understand.
This study could not establish a significant relationship between a mother's age,
education level, and marital status and the level of knowledge about the NHS or on
the reasons for non-compliance to the hearing retest, although other studies affirm
a relation between retest non-compliance and marital status[10] and socio-cultural level[8] of the mother and family.
In this sense, retest non-compliance, despite recommendations given as to its importance,
reflects the lack of awareness among the population about the need to monitor child
development for hearing loss prevention. We believe that the support of the interdisciplinary
team is essential for targeting educational development and guidance for this population,
especially from the nurse who spends more time at mothers' bedsides in maternity wards.
An American study in a maternity ward with more than 50% absenteeism in NHS follow-up[17] used a nurse at the bedside to perform targeted educational intervention for mothers
whose babies failed their NHS. They found a significant improvement in the number
of mothers who joined the program and concluded that the nurse is one of the health
professionals who can contribute to and actively participate in hearing health projects
in maternity wards.
It is important to analyze the concept of retest compliance in a multidisciplinary
way, for although mothers are the main target of the compliance process, success depends
not only on them, but also on various participants, such as family, health professionals,
and the health system itself, which must be integrated. By relying on technical-scientific
and popular knowledge and a professional dialogue, users can build knowledge and health
education in an integrated way, which covers health-disease and care to strengthen
confidence in the services received and provided.
Conclusions
The most significant determining factors for non-compliance to NHS retesting identified
among the surveyed mothers were forgetting the date and ignorance of the importance
of the retest. The level of ignorance about NHS was high in the studied sample. Our
research found no correlation between mother's age, education level, and marital status
with knowledge of the NHS and reasons for non-adherence to retest.
