TI iEGIS

This is to certify that the
thesis entitled

LOW FOLLOW-UP RATES IN NEWBORN HEARING
SCREENING: AN INVESTIGATION OF POTENTIAL
CONTRIBUTING FACTORS

presented by
Tamara Lynn Graham

has been accepted towards fulfillment
of the requirements for the

M. A. degree in Audiology

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6/01 cJCIRC/DataDuapes-sz

LOW FOLLOW-UP RATES IN NEWBORN HEARING SCREENING: AN
INVESTIGATION OF POTENTIAL CONTRIBUTING FACTORS

By

Tamara Lynn Graham

A THESIS

Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

MASTER OF ARTS
Department of Audiology and Speech Sciences

2002

ABSTRACT

LOW FOLLOW-UP RATES IN NEWBORN HEARING SCREENING: AN
INVESTIGATION OF POTENTIAL CONTRIBUTING FACTORS

By

Tamara Lynn Graham

Research indicates that 48%—83% of newborns that fail hearing screenings are lost
to follow-up. Four himdred subjects were targeted for this study. Parents were recruited
from three hospital-based prenatal classes in mid-Michigan. Questionnaires were
designed to gather data concerning parents’ feelings and opinions about the newborn
hearing screening program, parents’ previous experience with newborn hearing
screening, parents’ understanding of newborn hearing screening, and other factors that
researchers have reported might influence parent behavior. The factors included
transportation, transfer to new medical home, following a pediatrician’s or family
physician’s recommendations, poor tracking by personnel, poor caregiver compliance,
and distance traveled to the birth hospital. Parents of 47 infants completed the pre-natal
questionnaires for Group One. Twenty-nine of the 47 post-natal questionnaires for
Group One were returned. Findings from this study show that parents are not receiving
information about the newborn hearing screening. Studies evaluating the information
received and retained throughout the childbirth process can help researchers identify
factors that contribute to low follow-up. Results also indicated that parents value the
opinions and recommendations of their pediatricians and physicians, parents are not
perforating their own hearing tests at home to evaluate whether there may be concern for

a hearing screening.

TABLE OF CONTENTS

LIST OF TABLES ........................................................................................................... iv
LIST OF FIGURES .......................................................................................................... v
INTRODUCTION. . . . . . ....................................................................................................... 1
Evidence of Low Follow-up Rates from Screening Research ......................... 1
Factors Affecting Low F ollow-up Rate ................................................... 8

F ollow-up Rates and Other Neonatal Screening Programs ........................... 14
Conclusions .................................................................................. 1 7
METHODS ..................................................................................................................... .19
Subject Recruiting Procedures ............................................................ 19
Subject Groups .............................................................................. 20

Group One .......................................................................... 20

Group Two .......................................................................... 20

Hearing Screening Procedures ............................................................ 21
Questionnaires ............................................................................... 21
Group One: Pre-natal Questionnaire ............................................ 22

Group One: Post-natal Questionnaire .......................................... 24

Group Two: Post-natal Questionnaire .......................................... 25

RESULTS ....................................................................................................................... 26
Group One: Pre-natal Questionnaire .................................................... 26

Group One: Post-natal Questionnaire .................................................... 37

Group Two: Post-natal Questionnaire .................................................. 47

CONCLUSION ...................................................................................... 55
APPENDIX A ................................................................................................................. .58
APPENDIX B ....................................................................................... 6O
BIBLIOGRAPHY... ... ... ................................................................................................ .80

iii

LIST OF TABLES

Table l - F ollow-up rates from previous newborn hearing screening studies ................ 2
Table 2 - Factors affecting low follow-up rates ................................................... 9
Table 3 - Demographic Information for Group One (pre-natal questionnaire) .............. 27
Table 4 - City-County Education Data from 1990 Census Data .............................. 27
Table 5 - Spearman Correlational Analysis for of Variables Related to Parents’
Knowledge of the Newborn Hearing Screening (pre-natal) ................................... 35
Table 6 - Demographic Information for Group One (post-natal questionnaire) ............. 38

Table 7 — Summary of Knowledge About Hearing Screening Reported by Parents Who
Did Not Choose to Grant Permission for a Hearing Screening of Would Not Choose to
Bring Their Infants Back for a F ollow-Up Hearing Screening ................................. 41

Table 8 - Spearman Correlational Analysis of Variables Related to Parents’
Understanding of the Newborn Hearing Screening .............................................. 42

Table 9 — Comparison of Pre-Natal and Post-Natal Emotional Reactions to having the
Hearing Screening ................................................................................... 44

Table 10 — Spearman Correlational Analysis of Variables Related to Parents’ Compliance
with Pediatrician’s Recommendation ............................................................ 47

iv

LIST OF FIGURES
Figure 1 - Summary of parents’ responses to the question, “What do you think is the best
time period to have an infant’s hearing screened?” ............................................. 30

Figure 2 - Summary of parents’ responses to the question, “What is the earliest age a
child can receive treatment for a hearing loss?” ................................................. 30

Figure 3 - Summary of parents’ responses to the question, “Do you think that having an
infant’s hearing screened at birth is important?” ................................................ 31

Figure 4 - Summary of parents’ responses to the question, “Do you think newborn
hearing screenings do a good job of finding infants with a hearing loss?” .................. 32

Figure 5 - Parents’ acceptable responses to screening for vision problems ................. 33

Figure 6 - Summary of parents’ responses to the question, “Would you seek anyone’s
opinion about participating in the second screening?” ......................................... 34

Figure 7 - Parents’ responses to the question, “How do you feel about having your
infant’s hearing screened?” ......................................................................... 37

Figure 8 - Parents’ acceptable responses for screening for vision problems ................ 45

Introduction

Universal newborn hearing screening programs are being implemented as a
standard of care for newborns throughout the United States. The use of these programs
has increased the early identification of infants with hearing impairments (Joint
Committee on Infant Hearing, 2000). There is evidence that the language development
of three-year-olds with hearing impairment identified through newborn hearing
screenings exceed the abilities of three-year-olds with hearing impairment who do not
receive intervention until after 6 months of age (Abdala de Uzcategui and Yoshinaga-
Itano, 1997).

Newborn hearing screening programs on their own will not benefit infants with
hearing losses. Infants who fail screenings must receive follow-up diagnostic testing. It
is important that hearing loss is identified by 3 months of age and that intervention is
provided by 6 months of age (Joint Committee on Infant Hearing, 2000). The
identification of a newborn with a hearing loss is a two-stage process. The infant is
screened after birth. If the infant fails, he/she is referred for follow-up testing. Since
there are many false-positive results, follow-up testing is required to identify those
infants who truly have hearing impairments and trigger referral for appropriate
intervention. Currently, infants will receive services only if their parents take action.

Ma of Low Follow-up Rates from Screening Research

Studies have tracked the rate of follow-up for infants who fail a newborn hearing
screening. Of the infants who need follow-up testing, 48% to 83% return. Table 1
provides a summary of studies that document follow-up rates and factors that might have

an impact on parents’ decisions concerning whether to return for the follow-up testing.

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Shimizu, Walters, Proctor, Kennedy, Allen, and Markowitz (1990) reported data
gathered on 458,338 infants at Johns Hopkins Hospital in Maryland over five years
starting in 1983. The hearing screenings were done exclusively on infants in the neonatal
intensive care unit (N ICU). The authors did not indicate whether the parents were given
the option to decline the hearing screening, and did not describe the individuals who
performed the hearing screenings. Crib-o-grams and auditory brainstem response (ABR)
testing were used as screening procedures. Four hundred and ninety-one infants (<1%)
failed the initial screening and were immediately referred for further testing. For research
purposes, follow-up testing was to be done 4 to 6 months afier birth, 12 months after
birth, 18 months after birth, and 3 to 4 years after birth. Multiple visits permitted
comparison of the hearing screening data to the outcome of audiometric and
developmental measures obtained over 3 to 4 years. Only 338 infants (74%) returned to
have their hearing evaluated and not all returned at every stage of the follow-up testing.
Letters were mailed several times to parents as reminders of their follow-up
appointments. Staff made telephone calls to parents who failed to return for the
rescreening and also contacted the family’s pediatrician or family physician.
Transportation and free parking were offered to caregivers to eliminate cost and thus
reduce barriers to follow-up. Project data indicated that the more educated the mother,
the more likely the infant was to be brought back for at least one follow-up testing.
Shimizu and colleagues also reported that as the distance to be traveled increased and the
caregivers’ socioeconomic status decreased, return rates dropped.

Mehl and Thomson (1998) reported on 41,796 infants screened at 26 hospitals in

Colorado between 1992 and 1996. In 19 of the 26 hospitals, screening was done by

automated auditory brainstem response (AABR). Six of the remaining hospitals used
conventional ABR and the final hospital used transient evoked otoacoustic emission
testing (TEOAE). Screenings were performed by certified audiologists, technicians,
nurses, and trained volunteers. The availability of the screening and a recommendation
to screen were discussed with every parent. Parents were also offered the option of
declining the hearing screening. Three percent of the parents elected not to have their
babies screened. Of the 41,796 infants screened, 2,709 (6%) failed the initial screening.
Of those infants who failed, only 1,296 (48%) returned for follow-up. The authors did
not discuss factors contributing to the low percentage of infants that returned for follow-
up testing.

Finitzo, Albright, and O’Neal (1998) conducted research at nine hospitals in
Texas that had newborn hearing screening programs. From 1994 to 1997, 52,508
newborns were screened. Screenings were conducted by nurses, unit assistants,
electroencephalography technicians, an audiologist assisted by speech pathologists’ aides,
and respiratory therapists. The instrumentation used to screen the newborns was either
AABR, TEOAE, or distortion product otoacoustic emissions (DPOAE). Of the total
infants screened, 1,787 (3.4%) failed. A follow-up screening for the infants who failed
the first screening was scheduled between 1 week and 2 months post discharge using the
same screening protocol as the initial screening. One thousand, two hundred and
twenty-four infants (68.5%) returned for follow-up testing. The authors suggested that
one factor contributing to failure to return was the shift of control of the infant’s health
care from the hospital to a pediatrician, health maintenance organization, or health clinic.

They also suggested that some loss to follow—up was due to physicians advising the

parents that returning to the hospital for follow-up services was not necessary, and to
difficulties obtaining or maintaining accurate patient address records for the infants.
Over the study period of 3.5 years, there was an improvement in the rate of return for
follow-up. For example, the return rate for one site improved from 31% to 80% in just
one year. The return rate for all sites averaged 76.7% for the final year of the study. The
authors reported that this improvement reflected sending the screening results to
pediatricians and increased effort by audiology service coordinators and hospital staff to
convey the information about the hearing screening to the parents before discharge. This
included informing the parents about the technology that was used to screen their child
and providing the screening results in writing.

Aidan, Avan, and Bonfils (1999) studied a newborn hearing screening program in
France from 1995 to 1997. A total of 1,421 newborns were screened using TEOAE as
the screening protocol. The authors did not indicate who performed the hearing
screenings. All infants admitted into the NICU were excluded from the study. The
newborns received a hearing screening at least two days after birth and before being
discharged. It was not noted whether the parents were given the option to decline the
hearing screening. The hospital performed screenings only in the afternoons from
Monday through Friday. During the study, 173 newborns missed the newborn hearing
screening because of the timing of their births. If the newborns failed the first screening,
a second TEOAE screening was performed within one month. Two hundred and thirty
eight newborns (17%) were referred for a second screening. The authors did not indicate
whether the parents received an explanation or any information about the hearing

screening or the results. Only 123 (48%) returned for a follow-up rescreening. The

authors noted that multiple attempts were made to contact families who were lost to
follow-up, but did not indicate what procedures were used for these attempts. The
researchers suggested that one reason for the low return rate was that the parents had
healthy neonates and thus did not feel any concern about the hearing screening results.
The authors also noted that the hospital did not have a pediatric unit to perform the
follow-up for the newborns. They did not provide any information about the distance to
the nearest facility equipped to perform follow-up.

Meyer and colleagues (1999) examined the follow-up rate for 41 infants screened
at five pediatric hospitals in the Federal Republic of Germany from October 1995
through November 1997. A total of 777 infants were screened using AABR, TEOAE or
both. NICU infants were screened prior to discharge from the hospital, and all others
were screened 2 to 7 days after discharge. The author did not note who performed the
hearing screenings. Each of the infants screened had at least one of the risk factors
defined by the 1994 Joint Committee on Infant Hearing. The authors did not indicate
whether the parents of the newborns received any information about the newborn hearing
screening or an explanation of the results of the hearing screening. Forty-one (5%) of the
infants were referred for follow-up testing. Only 31 (76%) returned. The authors
reported that the reason some of the infants were not brought back was because the
parents refused follow-up testing.

De Ceulaer and colleagues (1999) conducted research on TEOAE newborn
hearing screenings in Belgium from 1993 to 1997. Audiologists screened the hearing of
3,751 newborns. All parents were informed about the procedure and benefits prior to the

screening. One hundred and thirty seven children (3.7%) failed the initial hearing

screening. When an infant failed the initial screening, the parents were immediately told
the results and asked to return for a rescreen three weeks later. If the infant was not
brought back for a rescreen, then a letter was sent six weeks after the birth to remind the
parents of the need for a rescreen. In 1994, the protocol was changed to sending a
follow-up letter four weeks afier birth, and then contacting the infant’s pediatrician or
family doctor if the parents failed to make an appointment for a rescreen. The percentage
of infants that returned for follow-up testing increased from 50% in 1993 to 89% in 1997.
De Ceulaer and colleagues attributed this decrease in loss to follow-up to changes in their
strategies, particularly contacting the pediatrician or family physician to enlist help in
encouraging the rescreening of infants.

Prieve and her coworkers (2000) investigated follow-up measures as part of the
New York State Universal Newborn Hearing Screening Demonstration Project. Eight
hospitals participated in this project over a three-year period. TEOAE was the screening
procedure at all sites. All of the sites planned to have the infants who failed the initial
screening rescreened 4 to 6 weeks after discharge. Each hospital had its own procedure
for informing parents that their infant failed the screening. Audiologists, technicians,
nurses, nurse practitioners, and students performed the screenings. At all sites, parents
were told of the screening failure before hospital discharge and given an outpatient
appointment. One hospital contacted the parents by telephone two weeks after failed
screenings and reminded them to bring their infant back for outpatient testing. A total of
43,311 infants were screened. Two thousand seven hundred and thirteen (6%) did not
pass the initial screening. Only 1,773 (65%) of those infants returned for follow-up

testing. More of the NICU infants (80%) returned than did infants from the well-baby

nursery (70%). The authors noted that the need for the infant to return for other follow-
up testing likely contributed to the higher rate for NICU infants. In addition, it was noted
that the return rate for all infants improved each successive year of the project. There
was an average increase from 66% to 85% across all sites in the rate of return for follow-
up over the three-year period. Prieve and her colleagues attributed the poor follow-up
rate to tracking methods that lacked critical details (e. g., pediatrician identity), and the
low acceptance of the program by parents. The researchers also hypothesized that, in the
second and third years of the study, medical personnel and members of the general
community were increasingly familiar with the program and thus may have encouraged
families to return for follow-up.

Factors Affecting Low Follow-up Rate

Several studies have focused on identifying factors that contribute to the low
follow-up rates just described. Table 2 provides a summary of factors described in this
research.

Abdala de Uzcategui and Yoshinaga—Itano (1997) gathered data on the reasons
that parents were not bringing their infants back for follow-up. The study was conducted
from January 1995 to April 1996 in two Colorado hospitals that were participating in a
universal newborn hearing screening project. Questionnaires were mailed to the parents
of 201 infants who were referred for additional hearing testing. Timing of the survey
relative to the initial screening was not reported by the authors. The questionnaire
consisted of seven questions designed to assess the parents’ understanding of the test

results, awareness of the child’s hearing status, emotional reaction to the child’s first

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hearing test, and awareness of the special needs of a child with a hearing loss. Hospital
#1 served a middle to upper income population in a suburban community and had a birth
rate of 6,611 births per year. Hospital #2 served a lower to middle income population in
an urban community and had a birth rate of 6,610 births per year. The authors noted that
the majority of patients at Hospital #2 were recipients of Medicaid. Hospital #1 mailed
out 100 surveys. Three were undeliverable and 53 were returned. Hospital #2 mailed
101 surveys. Twenty-seven were undeliverable and only 16 were returned. The results
showed that, in general, the populations expressed similar feelings about the hearing
screening. The authors indicated that most of the responses were positive and that the
parents felt that they were informed, comforted, encouraged, and satisfied. The parents
of children who had a confirmed hearing loss reported more frustration and expressed
more anger, depression, and confusion than did those whose children passed the follow-
up procedure. Twenty-five percent of the respondents from each hospital reported that
they did not return for follow-up testing. The reasons for not returning included anger
that this was happening to them and shock. The authors recommended that hospitals
attempt to reduce non-returns by training staff to use counseling techniques to reduce
negative reactions, using “professional standards” during screening, and providing
interpreters for clients who do not use English as their first language. The authors did not
indicate what they meant by “professional standards.”

Barringer, Mauk, Jensen, and Woods-Kershner (1997) explored the reactions that
parents had to newborn screening programs at Logan Regional Hospital in Logan, Utah.
A lO-question survey was administered to the parents of 169 newborns to gather their

perceptions of having their infants’ hearing screened. Measurement of evoked

10

otoacoustic emissions (EOAE) was used as the screening protocol. The authors did not
indicate whether the EOAEs were distortion product or transient. Obstetric nurses
distributed the questionnaire to one of the parents after the mother was admitted into the
hospital. The authors indicated that “most” of the parents felt that the screening was
important for early identification and extremely beneficial for their children’s welfare.
The parents also indicated that the anxiety they felt was outweighed by the fact that their
children would benefit from early detection. One question on the survey asked whether
the parent would have given permission if he or she had been asked prior to the
screening. Three (2%) parents indicated that they would not have given permission to
have their infants’ hearing screened. Their reasons included: not understanding the
service, questioning the accuracy of a hearing test on a newborn, and judging that it was
not important. Another question on the survey asked if parents would have been willing
to pay a $30.00 fee to have the hearing screening done. F orty-two parents (27%)
reported that they would not have been willing to pay for it.

Magnuson and Hergels (1999) studied the reactions and opinions of parents
whose children were screened at birth using otoacoustic emissions (OAE) and ABR. The
authors did not indicate whether DPOAE or TEOAE was used for testing. The
screenings were done at three well-baby nurseries in Linkoping, Sweden. Each of the
parents received an informational brochure describing the purpose of newborn hearing
screenings and the procedures involved. Parents of 26 children were interviewed in
person 8 to 12 months after the births of their children. The sample included infants that
had passed the first hearing screening, infants that required more than one hearing

screening, and infants that were diagnosed as having a hearing impairment. The primary

11

purpose of the interview was to obtain opinions that parents had about the newborn
hearing screening program including whether they had positive or negative views of the
screening, and what feelings were experienced by the screening. The questions were
open-ended with the opportunity to add supplemental questions when necessary to get a
more in-depth explanation from the parents. Significantly greater anxiety was reported
by the parents whose children required multiple screenings than those of children who
had only one or two screenings. Results of the interviews indicated that the parents
expressed concern for understanding the hearing screening and the results despite having
received the informational brochure. When the parents were asked about the information
they read in the brochure they had received, most parents responded that they did not
remember the information because there was so much other information about childbirth
that they were overwhelmed. The parents also reported that they would have liked to
have received the brochure prior to delivery. The authors concluded by stating that the
parents generally felt little anxiety about the hearing screenings, but that there is a need
for improvement in the way that parents are receiving information about the newborn
hearing screening programs to achieve a better understanding of the procedures and what
a failed screening really means.

From 1998 to 1999, Clemens, Davis, and Bailey (2000) studied a newborn
hearing screening program at Women’s Hospital of Greensboro, North Carolina. A total
of 5,010 infants were screened using ABR. Of these infants, 103 (2%) were referred for
follow-up; 85 (83%) returned. The study was designed to evaluate false-positive tests
and to gather information about any lasting anxiety that remained from having a false-

positive screening. If a newborn failed the initial screening, the infant was then screened

l2

a second time within 12 - 24 hours of the first screening. A survey administered by an
audiologist approximately five months after the newborn hearing screening was
completed by 49 of 76 mothers whose babies failed at least one of the hearing screenings
within a one-month period. Those mothers who did not complete the survey either did
not speak English or could not be contacted. Results of the survey indicated that
approximately half of the mothers surveyed (47%) felt that the results of the screening
were not adequately explained to them. It was also reported that 55% of the mothers did
not know which ear(s) failed the hearing screenings. The authors reported that seven of
the mothers surveyed experienced some lasting anxiety about their infants having false-
positive screenings. The authors found a positive correlation between lasting anxiety and
maternal college education, failure to fully understand the test results, and a second false-
positive screening.

Folsom and colleagues (2000) conducted a five-year study on 4,911 infants at 6
hospitals to evaluate strategies used to reduce the number of infants lost to follow-up in
newborn hearing screening programs. The screening tools used were DPOAE, TEOAE
and ABR. The subjects were infants that had one or more hi gh-risk indicators for hearing
loss. A total of 4,911 infants from the NICU and well-baby nursery who had failed the
screening were targeted for a follow-up behavioral audiometric assessment 8 to 12
months after the birth of the child. Attempts to contact the family included telephone
calls, sending registered letters and postcards, contacting other family members, and
contacting the primary care physician. In addition, the researchers offered
reimbursement for travel costs to the families. Three thousand one hundred and forty-

four infants (64%) were successfully recruited at least once to have the follow—up testing.

13

The loss to follow-up was attributed to several factors. The most common causes
included loss of contact with the families (51%), the family withdrew consent from the
study (27%), and the family moved away from the areas where the study was being
conducted (12%). Folsom and coworkers reported that they expected these findings since
a large portion of the NICU newborns come from high risk families (e. g., a single mother
with one or more children). Other maternal socioeconomic factors showing a positive
correlation with low compliance included maternal age, substance abuse, failure to have
insurance to cover costs of screening, and late-onset or lack of prenatal care.

Findings also suggested that withdrawal from the study was more likely to occur
for infants who were nonwhite or had surgery during the neonatal period. Families who
had relatives with hearing losses were more likely to remain active in the study than those
who didn’t. The authors suggested that these families had greater interest in learning
about the hearing screening and the results.

The authors hypothesized that the length of time from birth to follow-up testing
might have had an impact on the retention of the subjects in the study. The authors also
noted that this 8-12 month time period could have been too long.

Follow-ug Rates and Other Neonatal Screening Programs

Low follow-up rates exist in other types of newborn screening programs too.
Research by Grossman et al. and Tluzek et al. discuss some problems with follow-up and
emotional responses to newborn screening for abnormal hemoglobins and cystic fibrosis.

Grossman, Holtzman, Charney, and Schwartz (1985) conducted a study involving
‘ a newborn screening program for abnormal hemoglobins at two Baltimore hospitals. The

purpose of this study was to identify factors that impacted the follow—up in newborn

14

screening programs. Mothers received an explanation of sickle cell disease and trait
shortly afier‘their infants were born. Socioeconomic data were collected from the
mothers’ charts and the mothers were asked about educational background and familial
history with the sickle cell disease or trait. Infants who were screened and found to be
positive for the sickle cell trait received the results by mail and were classified into group
one of the study. A total of 91 infants were screened and found to be positive for the
sickle cell trait. The authors reported that only 1/3 of the “trait” families sought
counseling. The parents of those infants and the ones who did not seek counseling were
contacted by phone to schedule an appointment for genetic counseling. If the parents
could not be reached, a second attempt was made either by mail or phone. The parents
who agreed to receive counseling received an eight-question survey before and after a
genetic counseling session. Survey results revealed a statistically significant
improvement in parents’ knowledge about the sickle cell trait and disease following the
completion of the genetic counseling session.

The second study group included parents of these infants who had the trait and
were counseled, those infants who had the trait and refused counseling, and those infants
who did not have the trait. There were a total of 137 participants in this part of the study.
These parents were contacted by telephone approximately four to eight months after their
infants’ births and were interviewed using the same eight-question survey that was used
with the first study group. Results from the second study group showed that some of the
parents of newborns who had the screening and tested positive for the sickle cell trait
could not recall results and some of these parents had no recollection of whether they had

received genetic counseling or not. The authors concluded by noting the importance of

15

notifying and counseling families about the newborn screening results. They also
reported that they did not feel that they would have been successful if they had made an
increased effort to contact those families that were unwilling to participate in the study.
Tluczek and colleagues (1992) studied parents’ knowledge and responses to
neonatal screening for cystic fibrosis. From 1985 to 1988, they studied the parents of 104
infants at two different sites in Wisconsin. Parents received a brochure to inform them
about all of the screening procedures and that results were available on request. The
authors did not indicate when the brochure was distributed. The screening protocol
included an initial immunoreactive trypsinogen test and if the results were positive, a
follow-up diagnostic sweat test was scheduled 3 days later. Questionnaires were
designed from other studies addressing parents’ reactions to newborn screenings and an
open forum on neonatal screening for cystic fibrosis. Portions of the questionnaires were
distributed at the time of the sweat test to assess parents’ feelings during the 3-day
waiting period. Depending on the site, some of the parents were allowed to go home
prior to receiving the results of the screening, others were not. At one site, parents who
went home were informed of the screening results over the telephone and were then
asked to complete the remaining portion of the questionnaire and return it by mail. If the
infant failed the second screening, the parents were asked to return to the clinic and they
then received an explanation of the results in person. At another site, if the infant did not
require any additional testing, the parents completed the entire questionnaire prior to
returning home. Results from the questionnaires showed that more than half of the
parents were not aware of all of the neonatal screening tests that were performed on their

infants and misunderstood the screening protocol. A follow-up questionnaire was also

16

mailed to the 104 parents to assess any continued anxiety or emotions. Feelings that were
expressed by parents included thankfulness, disbelief, shock, depression, anger, anxiety,
and confusion. The follow-up questionnaires revealed that there was a positive
correlation between parents’ education level and the amount of knowledge about the
neonatal screening. The authors’ explanations for parents’ misunderstanding the
screening protocol included failure to read the informational brochure, failure to
understand the information in the brochure, or failure to retain the information in the
brochure. They suggested that training personal to understand family needs and to
deliver factual information will improve parents’ understanding the neonatal screening
tests and results. The authors also suggested that there is a need for improved public
awareness about neonatal screening.
W

The newborn hearing screening program is a tvvo-stage process. Infants who fail
the initial screening are targeted for follow-up assessment and diagnosis. Ensuring this
follow-up is the primary concern of the newborn hearing screening programs for well
baby, and NICU and other high-risk infants. Data collected over the past 12 years show
that the loss-to—follow-up rates range from 48% to 83%. Thus in order to have successful
newborn hearing screening programs, strategies for improving the follow-up rate must be
identified. Without follow-up, there is no intervention.

Few studies exist that provide data regarding the reasons for the loss to follow-up
and those that do exist have small sample sizes. In many cases, the research yields
hypotheses about contributing factors rather than documentation of relations between

factors and outcome. There is some evidence that poor tracking methods by hospital

17

personnel, caregiver’s lack of willingness to return for follow-up, transportation
problems, parents’ feelings about the hearing screening, mother’s level of education, and
socioeconomic status are contributing factors. Other factors such as transfer of infant’s
healthcare and physicians’ opinion might also influence parent behavior and result in a
low return rate for follow-up.

The purpose of this study was to collect additional data concerning the factors that
contribute to the low follow-up rate. Parents’ knowledge about newborn hearing
screening programs, their reactions to participating in the programs and their opinions
about factors that might impact return for follow-up were assessed via questionnaire.
This information can be used to develop ways to help increase return rates and thus
permit early identification and early intervention. This study focused on the following
questions.

1. Are parents’ age, race/ethnicity, education level, previous experience with
hearing screenings, parents’ knowledge about screening procedures, value of the opinions
of others, emotional responses to the screening and experience with early onset hearing
impairment in family members related to their decisions regarding participation in
hearing screenings and hearing screening follow-up procedures?

2. Do parents report that they would make the samedecisions about
participating in hearing screenings as they would other neonatal screenings?

3. - Do parents’ opinions and feelings about the newborn hearing screening
program change after the birth of their children?

4. Do parents perform their own hearing screenings to evaluate the hearing

status of their infants?

18

Methods
Subject Recruiting Procedures

Subjects for this study were recruited from hospital-based prenatal classes in mid-
Michigan. Four hundred parents enrolled in pre-natal classes at McLaren Regional
Medical Center, Sparrow Hospital, and Bronson-Borgess Hospital between May, 2001
and January, 2002 were asked to participate. The potential subject population included
single women, married women, women having a first child, and women attending the
pre-natal class as a refresher. This population was selected because of the ability to
identify large numbers of parents to receive the survey. It was hypothesized that parents
who demonstrate an interest in participating in pre-natal classes would be more willing to
participate in research than parents who do not attend pre-natal classes.

Informed consent was obtained using procedures approved by the Michigan State
University Committee on Research Involving Human Subjects (U CRIHS). Copies of the
consent forms and release of information form are provided in Appendix B. The
instructor at each prenatal class read a short passage to the class that served as an
introduction to an information packet that each woman received. The passage provided
general information about the research project including the time involved in
participating in the project and instructions about the consent procedures. A copy of the
passage is provided in Appendix B.

Subjects were recruited for two protocol groups. Group One participants
completed questionnaires twice (i.e., once before and once after the birth of their
children). Group Two participants completed questionnaires only after their children

were born.

19

Subject Groups

Group One

Each set of parents in the first group received an envelope containing a cover
letter, a questionnaire, a return envelope, a pair of booties, and information about the
research project. The booties were given to parents as an expression of gratitude for
taking the time to review the procedures involved in the study. Parents who agreed to
participate returned the questionnaire by mail prior to the birth of their children.

Members of Group One were also asked to indicate whether they would be
willing to complete a second survey. To do this, the mother provided her name, address
and due date. The second questionnaire along with a return envelope was mailed out
approximately two weeks after the due date. The second questionnaire included a release
of information form for the infant’s hearing screening results.

Groun Two

These parents received an envelope containing a description of the research
project, a consent form and a return envelope. Parents willing to complete a
questionnaire after the birth of their children provided their names, addresses, and due
dates. Approximately two weeks after the due date, parents received the questionnaire, a
return envelope, a release for the infant’s hearing screening results, and a pair of booties
for the infant. The purpose of having Group Two complete a survey only after the birth
of their children was to allow the researchers to evaluate whether repetition of the

questionnaire with Group One affected the post-birth responses.

20

Hearing Screening Procedures

According to hospital personnel, technicians and nurses performed hearing
screenings on all babies at the three participating hospitals using ABR, OAE, or both.
After the screening, a nurse, audiologist, doctor, or technician explained the results to the
parent. If the infant failed the screening, an audiologist met with the parent to schedule
follow-up. According to personnel at the three hospitals, parents did not receive any
information about the screening prior to birth.

Questionnaires

The questionnaires were designed to gather data concerning parents’ feelings and
opinions about the newborn hearing screening program, parents’ previous experience
with newborn hearing screening, parents’ understanding of newborn hearing screening,
and other factors that researchers have reported might influence parent behavior. The
factors included transportation (Shimizu et. al, 1990), transfer to new medical home
(F initzo et. al, 1999), following a pediatrician’s or family physician’s recommendations
(Finitzo et. al, 1999), poor tracking by personnel (Mehl and Thompson, 1998; DeCeulaer
et. al, 1999; Prieve et. al, 2000), and poor caregiver compliance (Abdala de Uzcategui
and Yoshinaga-Itano, 1997; Barringer et. al, 1997). The questionnaires also included
items designed to gather demographic information such as education level and two
factors that were not described in previous research. These were distance traveled to the
birth hospital and parents previous experience with newborn hearing screening programs.
The format was a mixture of closed and open-ended questions. Two questionnaires were
designed for Group One and one questionnaire was designed for Group Two. All three

questionnaires are available in Appendix B.

21

Group One: Pre-natal Questionnaire

The first questionnaire consisted of 25 items to be completed by one of the
parents. This questionnaire was distributed at the prenatal classes.

Demographic information. Shimizu and colleagues (1990) and Folsom and
colleagues (2000) found that the mother’s level of education and socioeconomic status
had an effect on the follow-up rate for bringing an infant back for a rescreening. Four
questions were designed to collect information about the parents’ age, marital status,
race/ethnicity, and level of education.

Parents’ previous experience with newborn hearing screening and hearing
_|9_;s_. Parents were asked if a hearing screening had been done on any of their other
children when they were born. Parents with this experience were asked for screening
results. A question was also developed to gather information about any family members
born with hearing loss. The relationship of that family member to the unborn baby and
the age at which the hearing loss was first noticed were requested.

Parents’ understanding of the newborn hearing screening. Research done by
Finitzo and colleagues (1998) indicated that there was an increase in the follow-up rate
when parents received information about the hearing screening. Magnuson and Hergels
(1999) and Abdala de Uzcategui and Yoshinaga—Itano (1997) studied the effects of the
follow-up rate in relation to the information that the parents received about the hearing
screening. These researchers found that parents did not retain much information from
brochures, but did feel informed when they received information from personnel at the
hospitals. Grossman et al. (1985) showed that parents were significantly more

knowledgeable about the hemoglobin screening procedures and screening outcomes after

22

receiving information from hospital staff. Three questions focused on parents’
knowledge about newborn hearing screening. These questions asked the parent about the
meaning of a failed screening, the age at which a child could have a hearing screening,
and the earliest age at which a child can receive treatment for a hearing loss. Two
questions were developed to gain information about any brochures or about the newborn
hearing screening that the parents received.

Pediatrician or family physician recommendations. F initzo and colleagues
(1998) suggested that physicians’ opinions about whether an infant should have a
rescreening were a contributing factor in parents’ decisions to return for follow-up. Two
questions focused on gathering data about whose opinions the parent would seek about
the hearing screening. One of these questions focused on the initial hearing screening.
The second focused on follow-up screening.

Transportation. Shimizu et. al. (1990) reported that transportation was a factor
contributing to the low follow-up rate. Two questions asked about distances traveled to
the hospital where the child would be born and whether transportation was available if
the child needed to be rescreened.

Parents’ feelings and opinions about the newborn screening program.
Barringer et al. (1997), Abdala de Uzcategui and Yoshinaga-Itano (1997), and Magnuson
and Hergels (1999) found that parents experienced increased levels of anxiety when a
rescreening was needed. One question focused on gathering information on the parents’
feelings about having the hearing screening. Three questions focused on parents’
feelings about other screening procedures. Parents were also asked whether they would

bring the infant back for follow-up testing if their infants failed the initial screening. Two

23

other questions that appeared asked parents about screenings for mental retardation and
vision. These questions were also asked in the post-natal questionnaire. Thus it was
possible to evaluate whether there was a change of opinion after the infants went through
the screening protocols.

Group One: Post-natal Questionnaire

The second questionnaire consisted of 24 items. Six questions were repeated
from the pre-natal questionnaire. This was done to permit comparison of parents’
responses before and after the births of their children and the subsequent newborn
hearing screenings.

Parents’ understanding of the newborn hearing screening‘and hearing loss.
Four questions focused on information parents received about the newborn hearing
screening program (e. g., who provided this information, type of information). A fifth
question asked the parents about the meaning of newborn hearing screening results.
Another asked about parents’ feelings and emotional reactions related to having the
hearing screening done. The parents were also asked whether they had attempted to
perform any hearing tests on their own.

Tluczek et al. (1992) indicated that a majority of parents did not know that cystic
fibrosis screenings were being administered to newborns. Two questions focused on
finding out if the parents were aware that a newborn hearing screening was performed
and what the results were. One question asked how the results of the hearing screening
were delivered.

Pediatrician or family physician recommendations. Parents were asked on the

first questionnaire whose opinions they would seek regarding the hearing screening. A

24

similar question was put on the post-natal questionnaire determine if the parents’
opinions changed from one questionnaire to the next. Parents were also asked if they
knew who delivered the hearing the screening results to them.

Transportation. Two questions that appeared on both surveys addressed
distance traveled and availability of transportation. This was to evaluate the consistency
between responses on the two questionnaires.

Parents’ opinions about other screening programs. Four questions on the
post-natal questionnaire asked parents’ opinions about other newborn screenings, whether
the infant passed or failed these screenings and if the parents would bring their infants
back for follow-up if their children failed one of these other screenings. Finally, parents
were asked whose opinions influenced the decision regarding return for follow-up testing.
This permitted investigation of changes in opinion following education about the
screening program and participation in the screening process.
gimp Two: Post-natal Questionnaire

This questionnaire consisted of 37 items and was sent by mail to the parents after
the birth of their child. The questionnaire contained all of the questions that Group One
received on the two separate questionnaires excluding those questions that were related to
pre-birth opinions.

Tracking Hearing Screening Results

Parents who were willing to allow the hearing screening results to be released
completed a permission form. Copies of the permission forms were sent to the
designated hospitals along with a cover letter requesting hearing screening results and a

description of the screening protocol that was used.

25

Results
Group One: Pre—natal Questionnaire

Description of respondents. The number of expectant mothers involved in each
prenatal class at the participating hospitals was approximately 12 to 15. A total of 200
envelopes were distributed to the target population for Group One. Seventy-five
envelopes were distributed at McLaren Regional Medical Center and at Sparrow Hospital
and 50 envelopes were distributed at Bronson-Borgess Hospital. Forty-seven (23.5%) of
the questionnaires were returned. Respondents were 42 mothers and five fathers who
ranged in age from 19 to 39 years (Mean = 29.3, SD = 4.8 yrs). Table 3 provides a
summary of the characteristics of these subjects. F orty-three (91%) of the participants
were married. F orty-four (94%) of the participants described their race/ethnicity as
White/Caucasian Non-Hispanic and three described themselves as Black/African
American Non-Hispanic. Sixty-four percent reported having completed at least a
bachelor’s degree. One person did not report a level of education.

Data collected during the 2000 census (U .S. Census Bureau, 2000) provide
information about the highest level of education attained by adults ages 25 and older in
Michigan. Seventeen percent do not have a high school diploma. A high school diploma
is the highest level for 31%, some college is the highest level for 30%, and 22% have at
least a bachelor’s degree. More geographically specific educational data exist from the
1990 census. City-county data for the adult population, ages 25 and older, are displayed
in Table 4 (Michigan Department of Community Health, 2002). Although the lack of age
stratification limits the comparisons that can be made between the subjects in this study

and the general population, these data do provide an indication that the subjects were

26

better educated than the general population in their communities. According to
Thompson (1990), such a situation would be expected when recruiting subjects from

prenatal classes.

 

Table 3 - Demographic Information for Group One (pre-natal)

Gender: Marital Status:

Mothers: 42 Single: 4

Fathers: 5 Married: 43

Divorced: 0

Age: Widowed: 0

Range: 19-39 yrs.

Mean (SD): 29.2 (4.8)

Race/Ethnicity:
White/Caucasian Non-Hispanic: 44 Black/African American Non-Hispanic:
Chicano/Mexican American: 0 American Indian/Alaskan Native:
Asian/Pacific Islander: 0 Asian American:
Hispanic: 0 Other:
Highest Level of Education:

High School Diploma: 8 Doctoral Degree:
Associate’s Degree: 3 Technical Trade School:
Bachelor’s Degree: 18 Law/Medical/Other Graduate Degree:
Master’s Degree: 9 Other: (all indicated “some college”)

No Response:

 

COO“)

u—IAN—du—n

 

 

 

 

Table 4 - City-County Education Data From 1990 Census Data
For Ages 25 and Older
County At least a At least a
High School Diploma Bachelor’s Degree
Kalamazoo 83.4% 27.1%
(Bronson-Borgess Hosptal)
Ingham 83.9% 29.2%
(Sparrow Hospital)
Genesee 76.8% 12.8%
(McLaren Medical Center)

 

 

 

27

Parents’ previous experience with newborn hearing screening and hearing

19p; All parents were asked if this infant would be the first of their children to have
his/her hearing screened at birth. Thirty-three (70%) of the participants reported that they
were completing the survey for their first child. Twenty-nine (88%) of the first-time
parents reported that this would be the first child to be screened; four responded “I don’t
know.” Three of the parents who already had children indicated that this would be the
first of their children screened and seven responded “I don’t know.” Four parents
reported previous experience with hearing screenings. All four reported that their other
children passed the newborn hearing screenings.

Parents were also asked to identify any family members with a hearing loss and to
report the age of onset for those hearing losses. Two parents reported relatives with adult
onset of hearing losses. Three parents described relatives with congenital or early onset
hearing losses. The first reported that she had a hearing loss with an onset at age 12, her
sister had an onset at age 16, and her mother had an onset at age 35. The second reported
that her mother was identified with a hearing loss by the time she was five years old. The
third reported that her grandmother was born with a hearing loss and indicated that it was
genetic. She also reported that her grandfather acquired a hearing loss at four years and
that it was due to scarlet fever.

Parents’ understanding of the newborn hearing screening. The parents were
asked, “What does it mean when an infant fails a hearing screening?” Forty-two (89%)
of the parents chose the response, “the infant might have a hearing loss and needs to have
further testing done.” Two parents (4%) chose, “the infant has a hearing loss of some

kind.” One parent chose both of these as definitions. Another parent circled multiple

28

responses, defining a failed screening as “the infant may have a hearing loss of some
kind,” “the infant has normal hearing,” “the equipment did not work right,” and “the
infant might have a hearing loss and needs to have further testing done.” One parent
selected “other” as a response, but did not define “other.”

Figure 1 shows the parents’ responses to the question, “What do you think is the
best time period to have an infant’s hearing screened?” “At birth” was the most frequent
response. Twenty-two parents (46%) chose that option. Most of the parents (89%)
selected only a single response, however five selected multiple responses. It is possible
that some of these parents selected multiple responses because they felt that multiple
screenings are best or that the choices were equally appropriate. The first chose “at birth”
and “6 months” and added “when you think you have a problem.” Two parents chose “at
birth” and “6 months.” The fourth parent chose “at birth” and “prior to entering school”
and another parent chose “at birth,” “3 years,” and “prior to entering school.” Two
parents (4%) did not choose any option provided, but indicated that they “did not know.”

Figure 2 shows the parents’ responses to the question, “What is the earliest age a
child can receive treatment for a hearing loss?” “At birth” was the most frequent
response. Fifteen parents (32%) selected that option. Three of the parents marked more
than one choice and/or indicated uncertainty. Of these, one parent selected “at birth,” “3
months,” and “6 months”; one parent selected “3 months” and “6 months” and one parent
selected “1 year.” One parent did not choose any of the options, but indicated that the

term “treatment” was a “nebulous” term.

29

Percentage of Parents

 

Birth 6 Months 1 Year 2 Years 3 Years Prior to Other' Don't
Entering Know
School
Fig. 1 Summary of parents' responses to the question. "What do you think is the best
time period to have an Infant‘s hearing screened?“ (An asterisk next to a term Indicates
that this was not a choice offered on the questionnaire.)

 

Percentage of Parents

 

Birth 3Months BMonths 1Ysar 2Ye¢s 3Years Priorto Don‘t NotSure'
Entering Know'

School
Fig. 2 Summaryot parents' responses to the question. "What is the earliest age a
child canrecsivetreatmentforaheartng loss?” (An asteriskneadtoatsnnindlcates
MWGWu‘ L: .n‘ 4'"; 1 . . )

 

 

 

Parents’ feeling; and opinions about the newborn hearing screening
prong. One parent did not select an answer to this question. Forty-three parents
(94%) reported that they would grant permission for a newborn hearing screening. Two
parents indicated that their decisions would be based on the procedures involved in the
hearing screening process. Another parent reported that she did not know and that she

would need more information about the procedure.

30

Figure 3 summarizes the responses to the question, ”Do you think having an
infant’s hearing screened at birth is important?” Twenty-one (45%) of the parents
reported that they felt that the newborn hearing screening was definitely important, 13
(28%) reported that it was probably important, 11 parents (23%) were not sure, and two

parents (4%) felt that the newborn hearing screening was probably not important.
7* 7T Y00%
90%
30% , ‘ _
70% :
60%
50% i... "
40%
30%
20% 5 “I";
10% p

0% __‘-_~_-'-.: -_.
Definitely Probably Not Sure Probably Not Definitely Not

Fig. 3 Summary of parents' responses to the question. "Do you think that having an infant's hearing
screened at birth is important?"

 

 

 

Percentage of Parents

  

 

 

   

Figure 4 shows the parents’ responses to the question, “Do you think newborn
hearing screenings do a good job of finding infants with a hearing loss?” Two parents
(4%) felt that it definitely did a good job, 15 (32%) felt that it probably did a good job, 27
(57%) were not sure whether it did a good job, and three parents (6%) felt that the
screenings probably did not do a good job of finding infants with hearing loss.

Opinions about follow-up to hearing screening and other newborn
screenings. Parents were asked whether they would bring their infant back to the
hospital for follow-up (re-screening) if the infant failed only a hearing screening. Forty-
four (94%) reported that they would bring the infant back and 3 (6%) reported that they

might bring the infant back for a hearing re-screening.

31

 

100%. -
90% ‘.

00%

   

i l
I g 70% i
s '. l
i g 60% .
l '6 "z i
. 50% ‘_
D :
l 13.0. 1
g 30% i
I r » .
, 20% ' l‘
i 10% 2' i
Definitely Probably Not Sure Probably Not Definitely Nor ‘
Fig. 4 Summary of parents' responses to the question. "Do you think newborn hearing screenings do a l
good job of finding infants with a hearing loss?" ‘
gl

 

When asked, “If your infant failed other screenings at birth and had to be brought
back for a re-screening, would you bring the infant back?” all of the parents reported that
they would bring their children back for follow-up. Two more specific situations were
posed to the parents. The first was, “Babies can be screened for a disorder that can cause
mental retardation. If the baby is put on a special diet, mental retardation can be avoided.
If your baby failed the screening for this disorder, would you bring the infant back for
further testing?” Forty-six parents (98%) indicated that they would bring their children
back to have a re-screening if their children failed the screening. One parent indicated
that she would need more information about false-positive rates.

The second situation presented to the parents was, “Imagine that we are
developing a new low-cost way to screen for vision problems. All babies with vision
problems will fail. Most babies with normal vision will pass the first time. Some babies
will have to take the test two times before they pass. Which of the following situations

would you find acceptable?” The choices were, “One out of 100 babies with normal

32

vision would need to take the test twice,” “Five out of 100 babies with normal vision
would need to take the test twice,” “Ten out of 100 babies with normal vision would need
to take the test twice,” and “Twenty out of 100 babies with normal vision would need to
take the test twice.” Parents were asked to choose as many responses as they felt
appropriate. The following table displays the highest acceptable retest rate chosen by
each parent. Eighty-seven percent of the parents that responded to this question felt that
it was acceptable for at least five babies out of every 100 babies with normal vision to

need to take the test twice.

     

 

Percentage of Parents

I OneouoHOO Flveouoftoo Tanolaof‘loo Twerayotaottoo NoResporlse
Flg,5Perenta‘ r‘ L' r ' ,' ' ' “

 

 

Influence of the opinions of others re: participation in newborn hearing

screening. Two questions focused on the importance of the opinions of other people
regarding the newborn hearing screening. When asked if they would have their
children’s hearing screened if their pediatricians felt it was necessary, 37 parents (79%)
reported that they would definitely have it done, nine (19%) indicated that they probably
would have it done and one parent (2%) reported that it depended on the age of the child

and the reason why the pediatrician felt it was necessary to have a hearing screening.

33

Parents were also asked whose opinions they would seek if they were asked to
participate in a second follow-up hearing screening. Parents could circle as many choices
as they felt appropriate. The results are displayed in Figure 6. Over 70% selected their
pediatrician. A total of 15 parents (32%) selected an audiologist. Two of these parents
indicated that they would seek only an audiologist’s opinion. The remaining 13 parents
also selected a physician or pediatrician as another source of opinions about the second

screening. Nine parents selected both a family physician and a pediatrician.

 

100%

90%

80%

Percentage of Parents
8
ae

30%

20% ‘

 

10°67

 

Pediatrician Family Audiologist ‘ Spouse Farnily Member No One Other
Physician

Fig. 6 Summary of parents' responses to the question. "Would you seek anyone's opinion about

participating in the second screening?”

 

 

 

A Spearman correlational analysis was used to investigate the relations among the
variables parent age, parent education, parents’ ratings of the importance of newborn
hearing screening, parents’ ratings of the accuracy of newborn hearing screening and
parents’ report of anticipated compliance with their pediatricians’ recommendation to

have their infants’ hearing screened. Table 5 provides a summary of the results.

34

Significant positive correlations were identified between parent age and parent education,
between parents’ ratings of the importance of newborn hearing screening and parents’
ratings of the accuracy of newborn hearing screening, between parents’ ratings of the
accuracy of newborn hearing screening and parent report of compliance with
recommendation of newborn hearing screening, and between parents’ ratings of the
importance of newborn hearing screening and parent report of compliance with
recommendation of newborn hearing screening. A significant negative correlation was
found between parents’ age and parents’ ratings of the importance of newborn hearing

screening.

 

Table 5 -Spearman Correlational Analysis of Variables Related to Parents’ Knowledge of
the Newborn Hearing Screening (Pro-Natal)

 

Importance of Accuracy of
Newborn Newborn Compliance with
Level of Hearing Hearing Pediatrician’s

Education Screening Screening Recommendation
Age .369“ -.302" -.203 -.262
Level of -. 102 .075 -.043
Education
Importance of
Newborn Hearing 332. .489”
Screening
Accuracy of
Newborn Hearing 324’
Screening '

 

” Correlation is significant at the 0.01 level (2-tailed).
“ Correlation is significant at the 0.05 level (2-tailed).

 

 

35

 

Transportation. Parents were asked about availability of transportation if their
child had to be brought back to the hospital to be screened again and approximately how
far they lived from the hospital. All of the parents reported that they would have
transportation available to bring their infants back to have a re-screening. The parents
were provided the choices “5 miles,” “10 miles,” “20 miles,” “30 miles,” “40 miles” and
“other” to indicate the distance from their homes to their hospitals. Eleven parents (23%)
reported “5 miles,” 20 (43%) reported “10 miles,” ten (21%) reported “20 miles,” three
(6%) reported “30 miles,” and three (6%) reported “40 miles.”

Emotional reactions to having a newborn hearing screening. The
questionnaire had one question that focused on parents’ feelings about having the hearing
screening done on their children. The responses from this question are displayed in
Figure 6. Forty-six of the parents responded to this question. Thirty-six of these parents
(76%) reported an emotional response to having the screening done. Nine parents (25%)
indicated that they did not have any emotional response to the prospect of having the
screening done, including one who indicated that, “it depends on how they do screening
tests.” One parent’s only response was other — “uncertain.” It was not clear whether this
was an indication of ambiguity about the emotional response or a description of the
emotion experienced.

Thirty-one parents (86%) responded with at least one positive response. They
selected “satisfaction” (37%), “comfort” (35%), “encouraged” (20%), “relief” (17%), and
“eager” (7%). Twenty-five (54%) of these parents responded with only positive
responses. One of these parents wrote in “responsible” (2%). Eleven parents (24%)

responded with at least one negative response. These included “nervous” (24%), “blame”

36

(4%), “anger (2%)” and “afraid (9%).” Of these eleven, five parents responded with only
negative responses. Six parents reported both positive and negative emotions. One
parent who selected the positive responses “comforted” and “encouraged” also wrote in

“passive.”

 

WWMPM

 

Fig. 7 Parents“ responses to the question, " How do you feel about having your infant's
hearing screwed?“

 

 

Grou One: Post-natal uestionnaire

Description of respondents. Twenty-nine of the 47 post-natal questionnaires for
Group One were returned. Nine of the questionnaires were incomplete (i.e., page two
was not filled in). Twenty-seven mothers and two fathers completed the second

questionnaire. Parents in this group ranged from age 23 to 39 years (Mean = 29.7, SD =

37

 

3.5 yrs). This is similar to the age of the participants that completed the first
questionnaire (range = 19-39, mean = 29.3, SD = 4.8). One of the four single mothers
completed the second questionnaire. Two of three Black/African American Non-
Hispanic parents completed the second survey. Eighty-three percent of the respondents
had at least a bachelor’s degree; 64 % of the original survey group had bachelor’s
degrees. All of the parents who reported a family member with a hearing loss completed
and returned the second questionnaire. Table 6 provides a summary of the characteristics

of the participants that completed the second questionnaire.

 

Table 6 - Demographic Information for Group One (post-natal)

Gender: Marital Status:

Mothers: 27 Single: 2

Fathers: 2 Married: 27

Divorced: 0

Age: Widowed: 0

Range: 23-39 yrs.

Mean (SD): 29.7 (3.5)

Race/Ethnicity:
White/Caucasian Non-Hispanic: 27 Black/African American Non-Hispanic: 2
Chicano/Mexican American: 0 American Indian/Alaskan Native: 0
Asian/Pacific Islander: 0 Asian American: 0
Hispanic: 0 Other: 0
Highest Level of Education:

High School Diploma: 3 Doctoral Degree: 0
Associate’s Degree: 1 Technical Trade School: 0
Bachelor’s Degree: 16 Law/Medical/Other Graduate Degree: 2
Master’s Degree: 6 Other: (all indicated “some college”) 1

 

 

 

Hearing screening results. All 29 of the parents reported that their infants’

hearing had been screened. One parent indicated that her child had been screened, but

38

that the screening was not at birth. Parents were also asked about the results of the
newborn hearing screening. Twenty—seven (93%) of the parents reported that their
infants passed the screening for both ears. One parent indicated that the infant failed for
both ears and one parent indicated that she did not know whether the infant passed or
failed the newborn hearing screening. The one parent whose child failed the newborn
hearing screening indicated that the infant returned for follow-up testing and passed for
both ears. Hearing screening results were obtained from all of the infants involved in the
study. Results indicated that all but one infant passed the newborn hearing screening.
This was the same infant that was identified by the parent.

Parents’ previous experience with newborn hearing screening. One question
on the survey asked the parents whether they knew if their infants were the first of their
children to have his/her hearing screened at birth. Twenty-five (86%) reported that this
child was the first to have his/her hearing screening, one (3%) reported that it was not the
first, and three parents (10%), who had other children, reported that they did not know.
With the exception of three parents who indicated on the first questionnaire that they did
not know if their newborns would be the first of their children to be screened and
indicated on the second questionnaire that they were the first to be screened, these
findings are consistent with the findings of the first questionnaire.

Parents’ understanding of the newborn hearing screening. Four questions
obtained information about parents’ education about the newborn hearing screening
program. One question asked, “Has anyone ever talked to you about newborn hearing
screenings?” Nineteen parents (66%) responded to this question. Of these, nine (47%)

reported that someone did talk to them about the newborn hearing screening and ten

39

(53%) reported that they did not receive any information. Parents who reported receiving
information were asked to identify who provided the information. One person reported
that the information came from a doctor and eight reported that they received the
information from a nurse.

All of the parents were also asked if they received any handouts or were shown
video-tapes discussing the newborn hearing screening. Eighteen (90%) of the 20 parents
who responded to this question reported that they did not receive any handouts or watch
any video-tapes. The two parents who responded that they did receive either a handout or
watched a video-tape indicated that this information was provided by a doctor or a nurse.

The parents were asked the meaning of a failed hearing screening. Nineteen of
the parents responded to this question. Eighteen (95%) of these selected the correct
choice, “the infant might have a hearing loss and needs to have further testing done.”

One parent reported that a fail meant both “the infant might have a hearing loss and needs
to have further testing done” and “the infant has a hearing loss of some kind.” Five
(11%) of the 47 respondents on the first questionnaire selected an incorrect response to
this question. Comparison of individual data from the three of these five who completed
both pre-natal and post-natal questionnaires revealed that two of the parents who chose
the wrong response “the infant has a hearing loss of some kind” on the first questionnaire
selected the correct choice on the second questionnaire. One other parent wrote in “beats
me” on the first questionnaire, but circled the correct choice on the second questionnaire.

Table 7 provides information from the respondents from the first and second
questionnaire who were unsure whether they would grant permission for a hearing

screening or were not sure whether they would bring their infants back for a follow-up

40

hearing screening. Each of these parents provided at least one incorrect response to the

questions about the meaning of a failed screening, the best time to have a hearing

screening, or the earliest age an infant can receive treatment for hearing loss.

 

Table 7 — Summary of Knowledge About Hearing Screening Reported By Parents Who Did Not
Choose to Grant Permission for a Hearing Screening or Would Not Choose to Bring Their
Infants Back for a Follow-Up Hearing Screening

 

Earliest Age an

 

 

 

 

 

 

 

Best Time to Infant Can Receive
Respondents Meaning of a Failed Screening Have Hearing T
Screened reatment for
Hearing Loss
Permission: The infant has a hearing loss of some Don’t Know Don’t Know
Don’t Know kind.
The infant has normal hearing.

F ollow-Up: The equipment did not work right.

Maybe The infant might have a hearing loss (This respondent did
and needs to have further testing not return a second
done. survey.)

Permission: The infant might have a hearing loss 6 months 3 months

Yes and needs to have further testing 6 months
done.

Follow-Up: (Both questionnaires)

Maybe

Permission: 1" questionnaire — “beats me” Birth Birth

Yes
2"“ questionnaire — The infant might

Follow-Up: have a hearing loss and needs to have

Maybe further testing done.

Permission: 1st questionnaire — The infant might When you Not sure

Depends on have a hearing loss and needs to have think you have

what’s involved. further testing done. a problem.

F ollow-Up: 2"" questionnaire — No response

Yes

Permission: The infant might have a hearing loss Birth 1 year

No response and needs to have further testing
done.

Follow-Up: (Both questionnaires)

Yes

Permission: l” questionnaire — The infant has a Birth Birth

Depends on hearing loss of some kind.

what’s involved
2‘“I questionnaire — The infant might

Follow-Up: have a hearing loss and needs to have

Yes further testing done.

 

 

 

 

41

 

To investigate the strength of the relations among the variables parents’ report of
the meaning of a failed screening, parents’ opinions of the best time period to have an
infant’s hearing screened, and parents’ opinions of the earliest age that an infant can
receive treatment for hearing loss, a Spearman correlational analysis was performed. The
correlations obtained are displayed in Table 8. These results indicated that there was a
significant positive correlation between parents’ opinions of the best time period that an
infant can be screened and parents’ opinions of the earliest age an infant can receive

treatment for hearing loss.

 

Table 8 - Spearman Correlational Analysis of Variables Related to Parents’
Understanding of the Newborn Hearing Screening

 

Parents’ Opinions of the Parents' Opinions of the
Best Time Period to Have Earliest Age that an Infant
an Infant’s Hearing Can Receive Treatment for
Screened Hearing Loss
Meaning ofa -.071 -.083

Failed Screening

Parents’ Opinions of the

Best Time Period

To Have an Infant’s .349“
Hearing Screened

 

" Correlation is significant at the 0.01 level (2-tailed).
"‘ Correlation is significant at the 0.05 level (2-tailed).

 

 

 

Delivery of hearing screening results to parents. Parents were asked how they

learned the results of the newborn hearing screening. Three parents (10%) did not
respond to this question. Of the 26 parents that responded, 15 (5 7%) of the parents
reported receiving the results from a nurse, including one individual who indicated that

the results came from both a nurse and a written report. Four (15%) received results from

42

an audiologist, and two (8%) indicated that they received a written report at the hospital.
Two (8%) received the results from a physician, including one who also received a
written report. Three other parents reported that they received the results from a
technician, looked at the infant’s chart, or watched the hearing screening.
Emotional reactions to having a newborn hearing screening progpam. Parents were
asked about their emotions regarding the newborn hearing screening after the birth of
their children. Sixteen parents responded to this question. Results indicated that twelve
(75%) of the parents who did respond identified at least one positive feeling. These were
“satisfaction” (75%), “comfort” (50%), “relief” (42%), “eager” (17%) and “encouraged”
(17%). Two of the twelve parents responded with both positive and negative responses.
Four other responses to this question included “none of the above” (19%), and
“unconcerned” (6%). Table 9 compares the results of the parents’ responses to this
question on the two questionnaires. The comparisons indicate that five people reported a
change in emotions on the second questionnaire. The parent that chose only positive
emotions on the first questionnaire and both on the second questionnaire added the
emotion “nervous.” One parent no longer expressed negative emotions and three others
who had selected other (none of the above) chose positive emotions on the post-natal
questionnaire. It is important to note that six parents that responded with negative
feelings on the first questionnaire did not return a second questionnaire and that nine of
the parents listed in the no response category did not complete any of the questions on
page two of the survey.

Parents performing hearing tests of their own. Parents were asked whether

they had tried to perform any hearing tests on their own. Twelve parents responded to

43

 

Table 9 — Comparison of Pre-Natal and Post-Natal Emotional Reactions to
having the Hearing Screening

 

 

 

 

 

Pre-Ngtal Quest. Post-Natal Quest.

Positive Only Positive Negative Both No Response Other
25 5 1 7

Negative Only

5 2

Both

6 1 l 1

No Response
1 l

 

we;
10 3 3 3

 

 

 

this question. Ten parents (83%) reported that they did not try to perform any hearing
tests on their own. Two parents indicated that they tried to test the hearing of their
children by snapping their fingers or calling the child’s name. Neither of these two
children had failed the newborn hearing screening or was fiom the families reporting
members with hearing loss.

Transportation. Two questions were included on the second questionnaire
regarding transportation. Parents of newborns were asked to indicate if they had
transportation available to bring the infant back to the hospital for follow-up testing if it
were necessary. Everyone, including the parent of the one infant in this study who failed
the hearing screening, indicated that transportation was available. Parents were asked to
indicate the distance they would need to travel to the hospital to have follow-up testing.

Seventy percent of the parents indicated that they lived “5 miles” or “10 miles” from the

44

hospital where they gave birth. These results were consistent with the results gathered
from the first questionnaire.

Other screening. The questions regarding screening for a disorder that could
cause mental retardation and screening for a vision disorder were repeated on the post-
natal questionnaire. The first of these was, “Babies can be screened for a disorder that
can cause mental retardation. If the baby is put on a special diet, mental retardation can
be avoided. If your baby failed the screening for this disorder, would you bring the infant
back for further testing?” Only twenty of the parents responded to this question. One
hundred percent indicated that they would bring their children back for further testing if
they failed the screening.

The second situation was, “Imagine that we are developing a new low-cost way to
screen for vision problems. All babies with vision problems will fail. Most babies with
normal vision will pass the first time. Some babies will have to take the test two times
before they pass. Which of the following situations would you find acceptable?” There
were multiple responses to this question on both surveys. The results for the post-natal

questionnaire are displayed in Figure 8. The responses graphed are the highest

,_,

Percentage of Parents

 

 

 

OneoutoHoo medtoo Tenoutottoo Twentyoutottoo NoReepanee

a

Fig.8'r‘uru1te' ,‘ r ' .fu ‘ '

 

45

acceptable level of re-tests selected by the parents. Of the parents that responded to this
question on the second questionnaire, 58% felt that having at least five out of one
hundred infants tested twice was acceptable.

Influence of the opinions of others re: participation in screening. There was
one question from the prenatal questionnaire about whether the parents would have a
hearing screening done if their pediatricians or family physicians felt that it was
necessary. On the second survey, a related question asked if the parents would have a
screening done again if the pediatrician felt it was necessary. Twenty-eight parents
responded to this question. Results indicated that 25 (86%) of the parents would
“definitely” follow their pediatricians’ or physicians’ recommendations. Three parents
(11%) indicated that they “probably would” follow the advice of the pediatrician or
family physician.

Seven (25%) of the parents’ responses indicated a change in their anticipated
responses to their pediatricians’ recommendations. Five parents who indicated on the
first questionnaire that they “probably would” follow their pediatricians’ or family
physicians’ recommendations responded, “definitely would “on the second questionnaire.
Two parents (8%) responded “definitely would” on the first questionnaire but responded
that they “probably would” on the second questionnaire.

If a parent indicated that the infant failed the newborn hearing screening, the
parent was then asked, “Who influenced your decision to bring the infant back for
follow-up?” The parent of the one infant who did not pass the newborn hearing
screening indicated that no one influenced her decision to have follow-up done on her

child.

46

A Spearman correlational analysis was performed to examine the relations
between parents’ age, parents’ level of education, anticipated compliance with the
pediatrician’s recommendation: prenatal and anticipated compliance with the
pediatrician’s recommendation: post-natal. The results are displayed in Table 10. No

significant correlations were found among the variables.

 

Table 10 - Spearman Correlational Analysis of Variables Related to Parents’
Compliance with Pediatrician’s Recommendation

 

Compliance with Compliance with
Level of Pediatrician’s Pediatrician’s
Education Recommendation - Recommendation -
Pre-natal Post-natal
Age .128 .018 .162
Level of .106 .509
Education
Compliance with .61 l
Pediatrician’s
Recommendation—
Pre-natal

 

” Correlation is significant at the 0.01 level (2-tailed).
‘ Correlation is significant at the 0.05 level (2-tailed).

 

 

 

Gropp Two: Post-natal Questionnaire

F ifiy-two envelopes were distributed to the target population for Group Two at

 

pre-natal classes from June, 2001 through September, 2001. Only one participant was
willing to have the questionnaire sent to her after the birth of her child. It was
hypothesized that the families did not understand the need to return the form. As a result,
the cover letter was changed to make it clearer that the parents needed to return the

permission form to receive the questionnaire after the birth of their child.

47

Seventy-five envelopes with the new cover letter were distributed from October,
2001 through November, 2001. There were still no responses after this change, so
another alteration was made. Since questionnaires were being returned for Group One
(the group receiving booties immediately), it was hypothesized that the addition of
booties would increase the return of the forms for Group Two. Booties were added to the
packets that were distributed to potential Group Two members. Twenty of the altered
packets were distributed during December, 2001 and January, 2002. This did not

improve the return rate for Group Two.

48

Discussion

Data could only be used from Group One (subjects who completed questionnaires
before and afier the births of their children) due to the poor return rate for Group Two
(subjects who completed questionnaires only after the births of their children.) Group
One consisted primarily of Caucasian, married, first-time parents whose infants passed a
newborn screening. All of the parents who completed the survey had at least a high
school diploma. None of the parents reported transportation problems that precluded
return to the hospital for follow-up testing. Sixty-four percent of the parents who
completed the pre-natal survey and 83% of the parents who completed the second survey
had at least a bachelor’s degree. The education level of the parents was consistent with
patterns observed across the United States in pre-natal class participants. According to
Thompson (1990) the national attendance rate data indicate that only 20% to 30% of
pregnant women attend pre-natal classes and that those who attend are primarily college-
educated women experiencing their first pregnancies.

The pre-natal survey response rate for Group One was 23.5% (47/ 100). Only 62%
of the pre-natal respondents returned the post-natal questionnaire. These low survey
response rates yielded a proportionately low potential for obtaining data from families
whose infants failed newborn hearing screenings. In light of the fact that only one
family’s infant failed, it was not possible to explore the relation between parents’
responses to actual hearing screening results (i.e., pass vs. fail) and parent characteristics,
knowledge, and opinions. It was, however, possible to analyze the relations among

parent characteristics, knowledge and opinions.

49

Parents’ decisions regarding participation and follow-up in hearing screenings.
Permission to have hearing screening. Barringer et al. (1997) collected data

from parents who were questioned prior to the birth of their children. They reported that
all but three parents in the study (98%) would have granted permission to have the
hearing screening done. When Group One parents were asked, on the first questionnaire,
whether they would be willing to grant permission for a hearing screening, 91% of the
parents indicated that they would grant permission. In addition, 89% reported that if their
infants failed the first hearing screening, they would grant permission to have rescreening
performed.

Knowledge about hearing screening procedures. Results from Magnuson and
Hergels (1999) indicated that the parents, who had received an informational brochure
explaining the hearing screening, expressed concern for understanding the hearing
screening process and the results. No Group One parents reported that they received any
informational handouts or videos discussing the newborn hearing screening and only half
(47%) reported that anyone talked to them about the newborn hearing screening. Eighty-
nine percent of the parents who completed the first questionnaire and 95% of the parents
who completed the second questionnaire knew what a hearing screening failure meant.
Only 57% of the parents knew that the best time to have their infants’ hearing screened
was by 3 months of age and only 32% of the parents knew that “at birth” was the earliest
age that a child can receive treatment for hearing loss. These data indicate that 43% to
68% of the parents may not understand that early identification and treatment is possible

or understand the potential benefits to be gained from early identification and treatment.

50

Findings from Barringer et al. (1997) indicate that parents felt that hearing
screening was important for early identification of hearing loss and extremely beneficial
for their children’s welfare. Data collected from this study indicated that 73% of the
parents of the parents who completed the first survey felt that hearing screening was
“definitely”(45%) or “probably “(28%) important, but only 36% felt that it “definitely”
(2%) or “probably” (34%) did a good job screening their newborns for hearing loss. A
positive correlation existed between parent report of importance of newborn hearing
screening and parent report of its accuracy on the first questionnaire. It is possible that
one reason that some of the parents are not bringing infants back for a follow-up hearing
screening is because they do not feel that hearing screening is important and accurate.

Emotional responses to t_l_ig screening process. Parents of newborns in this
study expressed a variety of emotions prior to having their infants’ hearing screened.
Results from the pre-natal questionnaire indicated that 86% of the parents identified at
least one positive feeling about having newborn hearing screening and 24% responded
with at least one negative feeling. On the post-natal questionnaire, after experiencing a
screening, 75% reported at least one positive emotional response on the post-natal
questionnaire and 13% reported at least one negative emotional response. The most
frequently reported were positive feelings of “satisfaction”, “comfort”, “relief”,
“encouraged” and “eager.” Frequently reported negative responses were “nervous” and
“afraid.” Six of the parents that reported negative feelings on the first questionnaire did

not return a second questionnaire. Therefore, it is unknown whether these parents

expressed these same negative emotions after the hearing screening.

51

Data reported by Abdala de Uzcategui and Yoshinaga-Itano (1997) and
Magnuson and Hergels (1999) indicated that the parents in their studies reported feeling
less nervous after the newborn hearing screening than before. Seven Group One parents
selected “nervous” on the first questionnaire. Four did not return the second
questionnaire or did not respond to this question when they completed the second
questionnaire. Two parents who responded “nervous” on the first questionnaire did not
select this choice on the second questionnaire. One parent selected “nervous” on both
questionnaires. One other parent responded with only positive emotions on the first
questionnaire but responded with both emotions, including “nervous” on the second
questionnaire. There were a variety of factors that could have played a role in the
parents’ emotions. There was not enough data to observe any pattem of changes or draw
any conclusions regarding the parents’ responses.

Value of the opinions of others. Research done by F initzo, Albright, and O’Neal
(1998) and De Ceulaer and colleagues (1999) suggested that low follow-up rates may be
due to physicians advising the parents that returning to the hospital for follow-up services
was not necessary. Findings from their studies showed that 98% of parents would have
sought their pediatricians’ opinions prior to having a second hearing screening. When
parents from Group One were asked if they would have their infant’s hearing screened if
their pediatricians felt it was necessary, 98% indicated that they would have it done.
Correlational data from Group One’s responses to the pre-natal questionnaire revealed a
significant positive correlation between parent report of importance of newborn hearing
screening and parent report of the importance of the pediatrician’s opinion. These data

indicate that parents who place the most value on hearing screening are the most likely to

52

comply with their pediatrician’s recommendations. There was no significant correlation
between these factors for the results of Group One’s post-natal questionnaire. It is not
possible to determine whether this reflects a change in the parents’ opinions or the
changes in the subject sample (e. g., size).
Parents Performing Hearing Tests of Their Own

Data collected from this survey indicate that few parents are performing any type
of hearing screenings of their own to evaluate the hearing status of their infants. Only
two parents reported having tried to perform a “hearing test “ of their own (e.g., snapping
fingers, calling infant’s name). These parents were not the parents reporting a history of
familial hearing loss or the parent of infant who failed the hearing screening. In light of
pre-natal reports of concern regarding the importance and/or accuracy of screening from
27% to 64% of the respondents it is difficult to interpret these findings. Among the
possibilities are that the parents lacked concern about their childrens’ hearing, that the
parents felt that the testing was ineffective, or that once the infants had been through the
screening process, the parents’ confidence in screening outcomes increased. No
hypotheses can be made regarding the behavior of parents of infants who fail the hearing
screening based on the single data point available.
Parents’ Opinions About Other Neonatal Screenings

When asked whether they would grant permission for a rescreening for a different
disorder (mental retardation), all but one of the parents on the first questionnaire
indicated that they would bring their infants back for a rescreening. The one parent that
did not agree to a rescreening for mental retardation indicated that it depended on the

rescreening protocol.

53

Another question regarding vision screening was developed as an attempt to
gather information about the importance of screening and how reliable parents feel the
screenings are. Eighty-seven percent of the parents felt that it was acceptable to retest at
least five out of every 100 babies with normal vision. Only two of these parents changed
their opinions on the second questionnaire. Fifty-eight percent of the parents that
responded to this question on the second questionnaire indicated that it was acceptable to
have at least five out of every 100 babies with normal vision to need to take the test
twice. The Task Force on Newborn and Infant Screening (1999) indicated that the false-
positive rate should not exceed 4%. These data indicated that the parents were willing to
tolerate a higher level of false positives than the Task Force on Newborn and Infant
Screening. Eleven percent of the parents on the first questionnaire and 7% of the parents
on the second questionnaire were not willing to accept more than a 1% rate (1 out of
every 100 babies would need to take the test twice). These parents might not be
comfortable with false-positive rates which could contribute to failure to follow-up for a
rescreening.

Egctorspffecting Group Two’s low return rate.

One problem in the study is the low participation in Group Two. Only one parent
in the prenatal classes was willing to participate in Group Two. A variety of factors may
have had an impact on the low return rate for the subjects in Group Two. One hypothesis
is the possibility that the individuals who received the Group Two packets were confused
by the instructions included on the cover letter. Amending the cover letter to provide
clearer instructions to the parent completing the questionnaire yielded no increase in

participation, adding baby booties to the initial packet (as was done for Group One) also

54

failed to elicit an increase in the return rate.

A third hypothesis is that the parents in Group Two felt that they had an
insufficient amount of information about the study in the packet they were given in the
prenatal classes. Some parents may have had concerns about the length of the
questionnaire or content of the questionnaire because they were not provided a copy prior
to giving consent to participate. One resolution might be to include information about
the length and some sample items in the project description.

Conclusions

Findings from this study are consistent with the research on newborn hearing
screening programs that indicate that parents are lacking information and knowledge.
Materials are not being provided to parents to inform and educate them about the
newborn hearing screening. Only 47% of the parents reported that someone talked to
them about the newborn hearing screenings. Twenty three percent of the parents were
not sure if a hearing screening at birth was important and 57% were not sure whether it
did a good job. These were well-educated parents who were actively seeking information
about childbirth and parenting. It can be hypothesized that at least these percentages of
the general population might demonstrate lack of understanding the hearing screening
process. While the data from this study do not permit investigation of a causal
relationship between knowledge about the screening process and failure to follow-up,
they do provide evidence that a sizeable percentage of parents lack the foundation for
knowledge-based decision making. Development of an educational program that
included reference materials (e.g., videos, handouts) might improve parents’ knowledge

about hearing screening.

55

Eighty-seven percent of the parents on the first survey and 57% of parents on the
second survey in this study were willing to accept retest rates at levels equal to or greater
than the guideline set by the Task Force of Newborn and Infant Screening (1999). It is
important to note that even in this well-educated group of parents, 11% of the parents
from the first questionnaire and 7% of the parents on the second questionnaire did not
accept retest rates greater than 1%. It is possible that discomfort with false-positive rates
could contribute to failure to follow-up after a failed screening. Educating parents about
the standard set by the Task Force of Newborn and Infant Screening could be a solution
to this discomfort.

The results from this study also indicate that most parents value the opinions and
recommendations of their pediatricians and physicians, and that those who place the
greatest value on physicians’ opinions are likely to place a high value on hearing
screening. It is important that the physician’s recommendation does not conflict with this
positive view of newborn hearing screening. Efforts by the State Department of
Community Health, professional groups and individual audiologists to educate
pediatricians and other physicians about importance of newborn hearing screening are
currently targeting this potential problem. Research concerning the opinions of
physicians about newborn hearing screening is needed to guide this effort.

All of those parents who had family members with early onset hearing
impairment showed concern regarding participation in hearing screenings and hearing
screening follow-up procedures. They all were aware of the meaning of a failed
screening and were willing to bring their infants back for follow-up testing if needed.

This group does not appear to be at high risk for failure to follow-up.

56

Several suggestions can be made for future studies about newborn hearing
screening programs. Conducting research on a larger and more diverse sample of parents
is critical. One possibility is recruiting parents in hospitals or at well-baby check-ups.
Increasing the benefits for participation might also increase the number of participants.
Finally, increasing the amount of information provided about the content of the
questionnaire during the recruiting period might increase parents’ willingness to

participate.

57

APPENDIX A

58

 

' OFFICE OF
RESEARCH
AND
GRADUATE
STUDIES

iverslty Committee on
Research Involving
Human Subjects

Michigan State Unwersrty
36 Administration Burloeng
East tansmg. MICi'llgan
48824-1046

517/355-2180

FAX‘ 517/353-2976

aw msu edu/user/ucnhs
E-Mail. ucnhs©rnsu edu

“2' Morgan $73.? wists”.
“354 IS institutiona' Diversrl)
Excellence In Amer

‘-’SU 15 an Jfllfmde-aCIIO'T
flea-7 ODDOITUN'L' L'shlwrw:

MICHIGAN STATE

UNIVERSITY

April 12, 2001

TO: Jill ELFENBEIN
374 Communication Arts Bldg.

RE: IRB# 01-207 CATEGORY: EXEMPT 1-C
APPROVAL DATE: April 10, 2001

TITLE: NEWBORN SCREENINGS: PARENT OPINION SURVEY

The University Committee on Research Involving Human Subjects' (UCRIHS) review of this
project is complete and 'I am pleased to advise that the rights and welfare of the humah
subjects appear to be adequately protected and methods to obtain informed consent are
appropriate. Therefore, the UCRIHS approved this project.

RENEWALS: UCRIHS approval is valid for one calendar year. beginning with the approval
date shown above. Projects continuing beyond one year must be renewed with the green
renewal form. A maximum of four such expedited renewals possible. Investigators wishing to
continue a project beyond that time need to submit it again for a complete review.

REVISIONS: UCRIHS must review any changes in procedures involving human subjects. prior
to initiation of the change. If this is done at the time of renewal, please use the green renewal
form. To revise an approved protocol at any other time during the year, send your written
request to the UCRIHS Chair, requesting revised approval and referencing the project's IRB#
and title. Include in your request a description of the change and any revised instruments,
consent forms or advertisements that are applicable.

PROBLEMS/CHANGES:‘ Should either of the following arise during the course of the work,
notify UCRIHS promptly: 1) problems (unexpected side effects. complaints. etc.) involving
human subjects or 2) changes in the research environment or new information indicating

greater risk to the human subjects than existed when the protocol was previously reviewed and
approved.

If we can be of further assistance. please contact us at (517) 355-2180 or via email:
UCRIHS@msu.edu. Please note that all UCRIHS forms are located on the web:
http://wwwmsu.edu/user/ucrihs

Sincerely,

 

Interim Chair, UCRIHS

AK: rj .
CC: Tamara Graham

8351 Goodwin Rd.
Lyons, Ml 48851

59

APPENDIX B

60

Newbor_n_§creenings: Parent Opinion Survey
Michigan State University

Department of Audiology & Speech Sciences
378 Communication Arts & Sciences
East Lansing, MI 48824-1212

 

Instructor.
Please read the following message to your class:

Tammy Graham is a graduate student at Michigan State University. She is gathering
information on the newborn screening programs at various mid-Michigan hospitals. She
is asking that you complete one or two brief questionnaires that will require only 15-30
minutes of your time. You are not required to participate in this study. However, she
would appreciate your help. You will find instructions in the envelope. If you are
interested. please follow the instructions carefully. If, afier reading over the packet, you
are not interested. please feel free to discard the information.

Instructor:
Please indicate the number of packets you hand out in each class.

Please indicate what type of prenatal class you are instructing. (e.g., first time
mothers, teen mothers, refresher course, etc.)

 

61

May 29. 2001

Dear Parent to be:

I am writing to invite you to participate in a research project. As a graduate student at
Michigan State University, I am studying newborn screening programs at various
mid-Michigan hospitals. I am collecting information about parents’ opinions and
knowledge about newborn screening programs. The information gathered will be used to
help improve screening programs for future newborns and their families.

Attached is a description of the study. There are no known risks to participating in this
study. Please use the enclosed addressed stamped envelope to return the questionnaire.
Participation in this study will take about 15-30 minutes. Your help would be appreciated.

If you are willing to grant permission, we would like to contact the hospital where your
infant was born to request the results of his/her hearing screening. A consent form is
attached to the questionnaire. This information will help us learn more about screening
procedures.

Thank you for participating in this project. If you have any questions or concerns, please
feel free to contact me at (616) 559-3449 or my advisor, Dr. Jill Elfenbein, at (517)
353-7837.

Sincerely.

Tammy Graham, B.S.
Graduate Student

62

Title of Project: Newborn Screenings: Parent Opinion Survey
Investigators: Tammy Graham, B.S.
Jill L. Elfenbein, PhD.
Purpose of Research:
Newborn screening programs exist in all hospitals in Michigan. The types of screening programs
vary from hospital to hospital. Newborn screenings are usually completed within the first 24

hours after birth. This study is designed to gather information about parents’ opinions and
knowledge about the newborn screening programs.

Number of subjects included in study:

We will be gathering information from approximately 400 families in the mid-Michigan area.
Invitations to participate will be offered to parents during scheduled pre-natal classes.

Description of the experiment:

A survey will be conducted to gather information concerning newborn screening programs in
Michigan. Three questionnaires have been developed to assess parents’ opinions and knowledge
about various aspects of the newborn screening programs.

Parents who volunteer to participate will be assigned to two groups. One group will be asked to
complete a questionnaire before and after the birth of their children. The other group will be
asked to complete questionnaires only afier the birth of their children. Each questionnaire will
take no more than 15 minutes to complete. Parents will also be asked to allow the researchers to
obtain their infants’ hearing screening results from their hospital.

Risks, discomforts and inconveniences of the research:

There are no known risks associated with your participation in this research. Communication
with the researchers will be done by mail. The only inconvenience involved is the lS-30 minutes
required to complete the questionnaires.

Expected benefits to the subjects or to others:

The information obtained will help us to better understand issues regarding newborn screening
programs at mid-Michigan hospitals. The information gathered will be used to help improve
screening programs for future newboms and their families.

Cost to subject or insurance carrier resulting from participation in the study:

Participation in this study will not result in any charges to you or your insurance company.

63

Confidentiality of information collected:

You and your child will not be identified in any reports on this study. The records will be kept
confidential to the extent provided by federal, state and local law.

Availability of further information:

Jill L. Elfenbein, Ph.D. (Audiology and Speech Sciences Department)
374 Communication Arts and Sciences Building

Michigan State University

East Lansing, MI 48824

(517) 353-7837

Tammy Graham. BS.

3975 Yorkland Dr. NW #5

Comstock Park, MI 49321

(616) 559-3449

If you have any questions or concerns about your rights as a research subject, you may also
contact David Wright at the University Committee on Research Involving Hurmm Subjects, 246
Administration BIdg., MSU, Telephone (517) 355-2180.

Voluntary nature of participation:

You do not have to participate in this study. You are he to withdraw at any time. A decision to
withdraw will not change the quality of care that you or your child receives from your hospital.

Documentation of consent:

One copy of this document is yours to keep.

64

NEWBORN SCREENING QUESTIONNAIRE
Pre Birth Survey I of 2

l. Please indicate who is completing this questionnaire.
Mother Father

2. What is your current age?

3. What is your marital status?

A. Single C. Divorced

8. Married D. Widowed

4. What is your race/ethnicity? If you are multiracial. circle all that apply.

A. White/Caucasian Non-Hispanic D. American Indian/Alaskan Native G. Hispanic

B. Black/African American Non-Hispanic E. Asian/Pacific Islander H. Other

C. C hicano/Mexican American F. Asian American

5. Please indicate your level of education.

A. 9th grade F. Bachelor's degree J. Law. medical or other
8. 10th grade 0. Master‘s degree graduate professional
C. l lth grade H. Doctoral degree degree

D. High school diploma 1. Technical Trade School K. Other

E. Associate’s degree

6. is this your first live born child?

yes no

7. Will this be the first of your children to have his/her hearing screened at birth?
yes no I don‘t know

 

8. If no. what were the results of the other infant(s) that had their hearing screened at birth?

 

 

 

9. Do you know of any family members that were born with a hearing loss: If so, please identify their relationship
to you (e.g.. grandmother. brother. etc). and the age that hearing loss started or was first noticed.
Relationship: Age hearing loss began:

 

 

to. If permission were required to perform a hearing screening on your infant. would you grant permission?
yes no

 

I I. If you checked yes, please tell why. If you checked no. please tell why.

 

 

 

12. What does it mean when an infant fails a hearing screening?

A. The infant is deaf E. The infant might have a hearing loss and needs to have
8. The infant has a hearing loss of some kind further testing done
C. The infant has normal hearing F. Other

 

C. The equipment did not work right

lof3

65

l3. Do you think that having an infant‘s hearing screened at birth is important?

A. Definitely C. Not sure E. Definitely not

B. Probably D. Probably not

l4. Do you think newborn hearing screenings do a good job of finding infants with a hearing loss?

A. Definitely C. Not sure E. Definitely not

B. Probably D. Probably not

l5. If your pediatrician felt that it was necessary to have your infant’s hearing screened. would you have it done?

A. Definitely would C. Not sure E. Definitely would not

B. Probably would D. Probably would not

I6. What do you think the best time period is to have an infant‘s hearing screened?

A. At birth C. At I year E. At 3 years

8. At 6 months D. At 2 years F. Prior to entering
school

l7. If your infant failed the hearing screening and needed to come back to the hospital. would you have
transportation available to bring the infant back to the hospital to be screened again?
yes no

 

 

I8. Approximately how far away do you live from the hospital where you are going to give birth?
A. 5 miles C. 20 miles E. 40 miles
B. 10 miles D. 30 miles F. Other

19. If your infant passed all other newborn screenings except the hearing screening, would you bring the infant
back for follow-up (re-screening)?

 

 

yes maybe no

20. Would you seek anyone‘s opinion about participating in the second screening? Circle all that apply.
A. Pediatrician D. Spouse F. No one

B. Family Physician E. Family Member G. Other

C. Audiologist

2 i. If your infant failed other screenings at birth and had to be brought back for a rc-screening, would you bring
the infant back?

yes maybe no

 

22. How do you feel about having your infant’s hearing screened? Please circle all that apply.

A. Nervous H. Relieved O. Afraid

B. Eager I. Annoyed P. Comforted

C. Guilty J. Confused Q. Encouraged

D. Depressed K. Angry R. Satisfied

E. Frustrated L. Lonely S. None of the above
F. Shocked M. Blame T. Other

G. Sad

23. What is the earliest age a child can receive treatment for a hearing loss?

A. Birth D. lyear F. 3years

B. 3 months E. 2years G. Prior to entering
C. 6months school

2 of}

66

24. Babies can be screened for a disorder that can cause mental retardation. If the baby is put on a special diet.
mental retardation can be avoided. If your baby failed the screening for this disorder. would you bring the infant
back for further testing?

yes no

 

25. Imagine that we are developing a new low-cost way to screen for vision problems. All babies with vision
problems will fail. Most babies with normal vision will pass the first time. Some babies will have to take the test

two times before they pass. Which of the following situations would you find acceptable? (Circle as many as you
find appropriate)

A. One out of mo babies with normal vision would need to take the test twice.
B. Five out of 100 babies with normal vision would need to take the test twice.
C. Ten out of mo babies with normal vision would need to take the test twice.

D. Twenty out of 100 babies with normal vision would need to take the test twice.

30”

67

ew ' ' t ' ' urve
Michigan State University
Department of Audiology and Speech Sciences
378 Communication Arts & Sciences Building
East Lansing, MI 48824-1212

Part I: Consent of parent

I have read the information on the attached sheets. I am willing to participate in the
research.

Parent Date
(signature)

 

Part 11: Second Survey participation

If you are willing to complete a second survey after the birth of your child, please print
your name and address below and indicate the date that your baby is due.

Name:

 

Address:

 

 

Due Date:

 

' UCRIHS APPROVAL FOR
THIS project EXPIRES:

APR 1 0 2002

SUBMIT RENEWAL APPLICATION
ONE MONTH PRIOR TO
ABOVE DATE TO CONTINUE

68

July 8. 2001

Dear Parent:

Congratulations on the new addition to your family. I would also like to thank you for
returning the first questionnaire and your willingness to participate in the second part of
this study. The information you are providing will help us to gain a better understanding
of the newborn screening programs at your hospital.

I have enclosed the second questionnaire. There are no known risks to participating in

this study. Please use the enclosed addressed stamped envelope to return the
questionnaire.

Thank you for taking the time to participate in this study. If you have any questions or
concerns, please feel free to contact me at (616) 559-3449 or my advisor, Dr. Jill
Elfenbein, at (517) 353-7837.

Sincerely,

Tammy Graham. B.S.
Graduate Student

69

NEWBORN SCREENING QUESTIONNAIRE
Poet air-rs Survey 2 or:

I. Please indicate who is completing this questionnaire.
Mother Father

2. Was your infant's hearing screened?
yes no i don't know

 

 

3. Is this the first time any of your children have had their hearing screened at birth?
yes no I don’t know

 

 

4. If no. what were the results of the other infant(s) screenings?

 

 

5. What were the results of your infant‘s hearing screening?
passed both ears passed one ear failed both ears I don‘t know

6. If the infant did not pass. did you bring the infant back for follow-up (re-screening)?
yes no plan to

 

7. If you brought the infant back for follow-up testing, what were the results of the hearing rescreening?

pass did not pass I don‘t know

8. Who in fluenced your decision to bring the infant back for follow-up (re-screening)?

A. Pediatrician D. Spouse F. No one

B. Family Physician E. Family Member 6. Other

C. Audiologist

9. How did you learn the results of the hearing screening?

A. Physician C. Nurse E. Report mailed to you
8. Audiologist D. Report received at hospital F. Other

ID. If your infant failed the hearing screening, did you have transportation available to take the infant back to the
hospital for follow-up (re-screening)?
yes no

 

l 1. Approximately how far away do you live from the hospital where you gave birth?
A. 5 miles C. 20 miles E. 40 miles
8. I0 miles D. 30 miles F. Other

l2. if your pediatrician or family physician felt that it was necessary to have your infant's hearing screened again,
would you have it done?

A. Definitely would C. Not sure E. Definitely would not
B. Probably would D. Probably would not

l3. Did your infant fail any other screenings at birth?

yes no I don’t know

l4. If so, did you bring the infant back to the hospital to be screened again?

yes no

 

IofJ

70

I5. Has anyone ever talked to you about newborn hearing screenings?
yes no I don't know

__.— ———

I6. If you answered yes. who talked to you?

 

I7. Has anyone ever given you a written handout or showed you a video tape about the newborn hearing screening
program?
yes no I don't know

 

I8. If you answered yes. who provided this information to you?

 

I9. What does it mean when an infant fails a hearing screening?

A. The infant is deaf E. The infant might have a hearing loss and needs to have
8. The infant has a hearing loss of some kind further testing done
C. The infant has normal hearing F. Other

 

C. The equipment did not work right

20. How did you feel about having you infant‘s hearing screened? Please circle all that apply.

A. Nervous H. Relieved O. Afraid

B. Eager l. Annoyed P. Cornforted

C. Guilty .l. Confused Q. Encouraged

D. Depressed K. Angry R. Satisfied

E. Frustrated L. Lonely S. None of the above
F. Shocked M. Blame T. Other

0. Sad

2|. Have you attempted to do any hearing tests on your own? If so. what kinds of things did you do and what were
the results?

 

 

 

22. Does your infant have any health problems? If so. please indicate what they are.

 

 

23. Babies can be screened for a disorder that can cause mental retardation. If the baby is put on a special diet.
mental retardation can be avoided. If your baby failed the screening for this disorder. would you bring the infant
back for further testing?

yes_____ no

24. Imagine that we are developing a new low-cost way to screen for vision problems. All babies with vision
problems will fail. Most babies with normal vision will pass the first time. Some babies will have to take the test
two times before they pass. Which of the following situations would you find acceptable? (Circle as many as you
find appropriate)

A. One out of IOO babies with normal vision would need to take the test twice.

8. Five out of I00 babies with normal vision would need to take the test twice.

C. Ten out of IOO babies with normal vision would need to take the test twice.

0. Twenty out of I00 babies with normal vision would need to take the test twice.

20H

71

Newborn Screenings: Parent Qpinion Survey

Michigan State University
Department of Audiology and Speech Sciences
378 Communication Arts & Sciences Building

East Lansing. MI 48824-1212

Release of hearing screening results

For our research, we would like to know the results of your infant’s hean’ng screening. If
you are willing to let us get the hearing results from your hospital. please complete the
form provided below.

Mother's Name:

 

‘m

Baby’s Name:

 

Hospital:

 

Date of Birth:

 

I give permission to release my infant's hearing screening records to Tammy Graham for
research purposes only.

Date

 

(signature)

Relationship to child (circle one): Mother/FatherlGuardian

UCRIHS APPROVAL FOR
THIS protect EXPIRES:

APR 1 0 2002

SUBglh'l" RENEWAL APPLICATION

E MONTH PRIOR
ABOVE DATE TO OONflTlgw

72

July 8. 2001

Dear Parent:

Congratulations on the new addition to your family. I would also like to thank you for
your participation in this study. As a graduate student at Michigan State University, I am
studying newborn screening programs at various mid-Michigan hospitals. I am collecting
information about parents’ opinions and knowledge about newborn screening programs.
The information gathered will be used to help improve screening programs for future
newborns and their families.

Attached is a description of the study. There are no known risks to participating in this
study. Please use the enclosed addressed stamped envelope to return the questionnaire.
Participation in this study will take about 15-30 minutes. Your help would be appreciated.

If you are willing to grant permission, we would like to contact the hospital where your
infant was born to request the results of his/her hearing screening. A consent form is
attached. This information will help us learn more about screening procedures.

Thank you for participating in this project. If you have any questions or concerns, please
feel free to contact me at (616) 559-3449 or my advisor, Dr. Jill Elfenbein, at (517)
353-7837.

Sincerely.

Tammy Graham. B.S.
Graduate Student

73

Title of Project: Newborn Screenings: Parent Opinion Survey
Investigators: Tammy Graham, B.S.

Jill L. Elfenbein, Ph.D.
Purpose of Research:
Newborn screening programs exist in all hospitals in Michigan. The types of screening programs
vary from hospital to hospital. Newborn screenings are usually completed within the first 24
hours after birth. This study is designed to gather information about parents‘ opinions and
knowledge about the newborn screening programs.

Number of subjects included in study:

We will be gathering information from approximately 400 families in the mid-Michigan area.
Invitations to participate will be offered to parents during scheduled pre-natal classes.

Description of the experiment:

A survey will be conducted to gather information concerning newborn screening programs in
Michigan. Three questionnaires have been developed to assess parents’ opinions and knowledge
about various aspects of the newborn screening programs.

Parents who volunteer to participate will be assigned to two groups. One group will be asked to
complete a questionnaire before and afler the birth of their children. The other group will be
asked to complete questionnaires only afler the birth of their children. Each questionnaire will
take no more than IS minutes to complete. Parents will also be asked to allow the researchers to
obtain their infants’ hearing screening results fiom their hospital.

Risks, discomforts and inconveniences of the research:

There are no known risks associated with your participation in this research. Communication
with the researchers will be done by mail. The only inconvenience involved is the 15-30 minutes
required to complete the questionnaires.

Expected benefits to the subjects or to others:

The information obtained will help us to better understand issues regarding newborn screening
programs at mid-Michigan hospitals. The information gathered will be used to help improve
screening programs for future newborns and their families.

Cost to subject or insurance carrier resulting from participation in the study:

Participation in this study will not result in any charges to you or your insurance company.

74

Confidentiality of information collected:

You and your child will not be identified in any reports on this study. The records will be kept
confidential to the extent provided by federal, state and local law.

Availability of further information:

Jill L. Elfenbein. Ph.D. (Audiology and Speech Sciences Department)
374 Communication Arts and Sciences Building

Michigan State University

East Lansing. MI 48824

(5I7) 353-7837

Tammy Graham. BS.

3975 Yorkland Dr. NW #5

Comstock Park. MI 49321

(616) 559-3449

If you have any questions or concerns about your rights as a research subject, you may also
contact David Wright at the University Committee on Research Involving Human Subjects, 246
Administration Bldg, MSU, Telephone (517) 355-2180.

Voluntary nature of participation:

You do not have to participate in this study. You are free to withdraw at any time. A decision to
withdraw will not change the quality of care that you or your child receives from your hospital.

Documentation of consent:

One copy of this document is yours to keep.

75

NEWBORN SCREENING QUESTIONNAIRE
Post Birth Survey I of I

I. Please indicate who is completing this questionnaire.
Mother Father

2. What is your current age?

3. What is your marital status?

A. Single C. Divorced

B. Married D. Widowed

4. What is your race/ethnicity? If you are multiracial, circle all that apply.

A. White/Caucasian Non-Hispanic D. American Indian/Alaskan Native G. Hispanic

B. Black/African American Non-Hispanic E. Asian/Pacific Islander H. Other

C. Chicano/Mexican American F. Asian American

5. Please indicate your level of education.

A. 9th grade F. Bachelor's degree J. Law. medical orother
B. IOth grade 0. Master‘s degree graduate professional
C. I lth grade H. Doctoral degree degree

D. High school diploma I. Technical Trade School K. Other

E. Associate's degree

6. Is this your first live born child?
yes no

7. Was your infant's hearing screened?
yes no I don‘t know—

8. What were the results of your infant‘s hearing screening?
passed both ears passed one ear failed both ears I don‘t know

9. If the infant did not pass. did you bring the infant back for follow-up (re-screening)?
yes no plan to

 

 

IO. If your infant failed the hearing screening. did you have transportation available to take the infant back to the
hospital for follow-up (re-screening)?
3'95 no

 

 

I I. If you brought the infant back for follow-up testing. what were the results of the hearing re-screening?
pass did not pass I don't know

I2. Who influenced your decision to bring the infant back for follow-up (re-screening)?

A. Pediatrician D. Spouse F. No one
B. Family Physician E. Family Member O. Other
C. Audiologist

I 3. Is this the first time any of your children have had their hearing screened at birth?
yes no I don't know

 

I4. If no. what were the results of the other infant(s) that had their hearing screened at birth?

 

 

Iof3

76

IS. 00 you know of any family members that were born with a hearing loss: If so. please identify their
relationship to you (e.g.. grandmother. brother. etc.). and the age that hearing loss started or was first noticed.
Relationship: Age hearing loss began:

 

 

I6. If permission had been required to perform the hearing screening on your infant. would you have granted
permission? .
yes no

I7. If you checked yes. please tell why. If you checked no. please tell why.

 

 

 

l8. How did you learn the results of the hearing screening?
A. Physician C. Nurse E. Report mailed to you
.8. Audiologist D. Report received at hospital F. Other

I9. Has anyone ever talked to you about newborn hearing screenings?
yes no I don't know

 

20. If you answered yes. who talked to you?

 

2|. Has anyone ever given you a written handout or showed you a video tape about newborn hearing screening
programs?
yes no I don‘t know

 

 

22. If you answered yes. who provided this information to you?

 

23. What does it mean when an infant fails a hearing screening?

A. The infant is deaf E. The infant might have a hearing loss and needs to have
B. The infant has a hearing loss of some kind further testing done
C. The infant has normal hearing F. Other

 

C. The equipment did not work right

24. Do you think that having an infant's hearing screened at birth is important?

A. Definitely C. Not sure E. Definitely not
B. Probably D. Probably not
25. Do you think newborn hearing screenings do a good job of finding infants with a hearing loss?
A. Definitely C. Not sure E. Definitely not
B. Probably D. Probably not
25. What do you think is the best time period to have an infant‘s hearing screened?
A. At birth C. At l year E. At 3 years
B. At 6 months D. At 2 years F. Prior to entering
school
27. Approximately how far away do you live from the hospital where you gave birth?
A. 5 miles C. 20 miles E. 40 miles
B. IO miles D. 30 miles F. Other
2 of3

77

28. If your pediatrician felt that it was necessary to have your infant's hearing screened. would you have it done?
A. Definitely would C. Not sure E. Definitely would not
B. Probably would D. Probably would not

29. Did your infant fail any other screenings at birth?
yes no I don‘t know

 

30. If so. did you bring the infant back to the hospital to be screened again?

 

yes___ no

3|. Would you seek anyone‘s opinion about participating in a second screening? Circle all that apply.

A. Pediatrician D. Spouse F. No one

B. Family Physician E. Family Member G. Other

C. Audiologist

32. How did you feel about having your infant's hearing screened? Please circle all that apply.

A. Nervous H. Relieved O. Afraid

B. Eager l. Annoyed P. Comforted

C. Guilty J. Confiised O. Encouraged

D. Depressed K. Angry R. Satisfied

E. Frustrated L. Lonely S. None of the above
F. Shocked M. Blame T. Other

G. Sad

33. What is the earliest age a child can receive treatment for a hearing loss?

A. Birth D. lyear F. 3years

B. 3 months E. 2years G. Prior to entering
C. 6months school

34. Have you attempted to do any hearing tests on your own? If so. what kinds of things did you do and what were
the results?

 

 

 

35. Does your infant have any health problems? If so. please indicate what they are.

 

 

36. Babies can be screened for a disorder that can cause mental retardation. If the baby is put on a special diet.
mental retardation can be avoided. If your baby failed the screening for this disorder. would you bring the infant
back for further testing?

yes no

37. Imagine that we are developing a new Iowcost way to screen for vision problems. All babies with vision
problems will fail. Most babies with normal vision will pass the first time. Some babies will have to take the test
two times before they pass. Which of the following situations would you find acceptable? (Circle as many as you
find appropriate)

A. One out of IOO babies with normal vision would need to take the test twice.

B. Five out of I00 babies with normal vision would need to take the test twice.

C. Ten out of I00 babies with normal vision would need to take the test twice.

D. Twenty out of IOO babies with normal vision would need to take the test twice.

30f3

78

w ' ° e ' i
Michigan State University
Department of Audiology and Speech Sciences
378 Communication Arts 8!. Sciences Building
East Lansing. MI 48824-12I2

Pan l: Consent of parent

I have read the information on the attached sheets. I am willing to participate in the
research.

Parent Date
(signature)

 

Part II: Release of hearing screening results

For our research, we would like to know the results of your infant‘s hearing screening. If
you are willing to let us get the hearing results from your hospital, please complete the
form provided below.

Mother's name:

 

Baby's name:

 

Hospital:

 

Baby‘s Date ofBirth:

 

I give permission to release my infant‘s hearing screening records to Tammy Graham.

Date

 

 

(signature)

Relationship to child (circle one): Mother/Father/Guardian

UCRIHS APPROVAL FOR
THIS project EXPIRES:

APR 1 0 2002

SUBMIT RENEWAL APPLICATION
- ONE MONTH PRIOR TO
ABOVE DATE TO CONTINUE

79

BIBLIOGRAPHY

Grossman. L., Holtzman, N., Charney, E., and Schwartz, A. (1985). Neonatal screening
and genetic counseling for sickle cell trait. AJDC L32, 241-244.

 

Jacobson, C. A., and Jacobson, J. T. (1990). Follow-up services in newborn hearing
screening programs. Journal of the American Academy of Audiology, 1, 181-
186.

Jacobson, J. T. (1990). Issues in newborn ABR screening. Journal of the American
Academy of Audiology, 1, 121-124.

Shimizu, H., et a1. (1990). Identificaton of hearing impairment in the neonatal intensive
care unit population: outcome of a five-year project at the Johns Hopkins
Hospital. Seminars in Hearing, 11 (2), 150-160.

Thompson, J. E., and Merkatz,1. R. (1990). New Perspectives on Prenatal Care. New
York: Elsevier.

Tluczek, A. et al. (1992). Parents’ knowledge of neonatal screening and response to false-
positive cystic fibrosis testing. Developmental and Beh_aviora1 Pediatrics, I_3_ (3),
181-186.

Barringer, D. (3., et al. (1997). Survey of parents’ perception regarding hospital-based
newborn hearing screening. Audiology Today, _9_, 18-19.

Abdala de Uzcategui, C. and Yoshinaga-Itano, C. (1997). Parents’ reactions to newborn
hearing screening. Audiolcgy Today, _9_, 24-27.

Mehl, A. L. and Thomson, V. (1998). Newborn hearing screening: The great omission.
Pediatrics 101 , (l), www.pediatrics.org/cgi/content/firll/l 01/1/e4.

 

F initzo, T., Albright, K. and O’Neal, J. (1998). The newborn with hearing loss:
Detection in the nursery. Pediatrics I_(Q, 1452-1460.

 

Aiden, D., Avan, P., and Bonfils, P. (1999). Auditory screening in neonates by means of
transient evoked otoacoustic emissions: A report of 2,842 recordings. Annals of
Otol. Rhin_ol. nggl, M, 525-531.

De Ceulaer, 0., et al. (1999). Neonatal hearing screening with transient otoacoustic
evoked otoacoustic emissions: A learning curve. Audiology, 3_8_, 296-302.

Magnuson, M., and Hergils, L., (1999). The parents’ view on hearing screening in
newborns. Scandanavian Audiology, 2,8. 47-56.

80

Meyer, C., et a1. (1999). Neonatal screening for hearing disorders in a selected group of

neonates and the feasibility of selective hearing screening. Pediatrics. 104, 900-
904.

Task Force on Newborn and Infant Hearing. (I999). Newborn and infant hearing loss:
detection and intervention. Pediatrics I_(fi (2), 527-530.

 

Clemens, C ., Davis, S., and Bailey, A. (2000). The false-positive in Universal Newborn
Hearing Screening. Pediatrics
http ://www. pediatricsorglcgi/content/fiill/l 06/ 1 /e7

 

Folsom, R., et al. (2000). Identification of neonatal hearing impairment: Recruitment
and follow-up. Ear and Hearing, 2_1, 462-470.

Prieve, B., et al. (2000). The New York State universal newborn hearing screening

demonstration project: Recruitment and follow-up. Bar and Hearing, 21, 118-
130.

81