Attitudes of Children With Dysphonia

*†Nadine P. Connor, *†Stacy B. Cohen, *†Shannon M. Theis,

‡Susan L. Thibeault, †Diane G. Heatley, and *†Diane M. Bless
*†Madison, Wisconsin and ‡Salt Lake City, Utah

Summary: Because voice disorders in childhood may have a negative im-

pact on communicative effectiveness, social development, and self-esteem,
the objective was to determine the impact of voice disorders on lives of chil-
dren from the perspective of chronically dysphonic children and their parents.
This study consisted of focused interviews with chronically dysphonic chil-
dren and their caregivers. Focused interviews were conducted with 10 chil-
dren in each of the following age groups: Toddler (2–4 years old), Young
Child (5–7 years old), School-Aged Child (8–12 years old), and Adolescent
(13–18 years old). Interview questions were formulated to elicit attitudes in
the following conceptual domains: emotional, social/functional, and physical.
Interviews were transcribed and subjected to systematic qualitative analyses
that identified common themes within each age group for each conceptual do-
main. For Toddlers, interviews relied heavily on parents and the biggest con-
cerns were found in the physical and functional domains. Young Children
expressed that their biggest issues related to voice were physical (‘‘run out
of air,’’ ‘‘sometimes voice does not work’’). Ninety percent of Young Chil-
dren were repeatedly asked to use a quieter voice. Emotional factors and
physical factors were prominent in the interviews of School-Aged Children
and Adolescents. Children and Adolescents often felt that their dysphonic
voice received undue attention and also limited their participation in impor-
tant events. Anger, sadness, and frustration were also expressed. Chronic
dysphonia negatively affects the lives of children. This work will serve as
the basis for development of a valid, reliable, and age-appropriate measure
of voice-related quality of life in children.
Key Words: Dysphonia—Children—Attitudes—Quality of life—Voice
disorders.

Accepted for publication September 15, 2006. University of Wisconsin, Clinical Science Center K4/711,
From the *Department of Communicative Disorders, 600 Highland Avenue, Madison, WI 53792-7375. E-mail:
University of Wisconsin-Madison, Madison, Wisconsin; connor@surgery.wisc.edu
†Department of Surgery, Otolaryngology – Head & Neck Sur- Journal of Voice, Vol. 22, No. 2, pp. 197–209
gery, University of Wisconsin-Madison, Madison, Wisconsin; 0892-1997/$34.00
and the ‡Department of Otolaryngology – Head & Neck Sur- Ó 2008 The Voice Foundation
gery, University of Utah, Salt Lake City, Utah. doi:10.1016/j.jvoice.2006.09.005
Address correspondence and reprint requests to Nadine P.
Connor, PhD, Assistant Professor, Department of Surgery,

197
198 NADINE P. CONNOR ET AL
INTRODUCTION
Dysphonia may adversely impact a child’s gen-
eral health, communicative effectiveness, social
and educational development, self-esteem, self-im-
age, and participation in school group activities. To
this point, based on voice recordings alone, children
with dysphonia were rated negatively on physical,
social, and personality factors by naı̈ve, young
adult judges, when compared to children without
dysphonia.1 Specifically, dysphonic children were
judged more negatively than their nondysphonic
peers on all but two bipolar comparisons of
physical and personality characteristics, such as
‘‘dirty-clean,’’ ‘‘bad-good,’’ ‘‘cruel-kind,’’ ‘‘worth-
less-valuable,’’ ‘‘dishonest-honest,’’ ‘‘sick-healthy,’’
‘‘sad-happy,’’ and ‘‘wrong-right.’’1 Very similar re-
sults were found when normal-speaking children
(ages 9–11 years) served as judges,2 and also for
children with Down syndrome.3 It can be inferred
from these reports that voice disruptions have a neg-
ative effect on how children are perceived by adults
and by their peers. It follows, then, that dysphonia
may have a substantial negative effect on children’s
lives. However, this issue has not been adequately
addressed in the medical, social science, or educa-
tional literature. Therefore, the true impact of
dysphonia on the lives of children is currently
unknown and warrants study.
Childhood dysphonias have an estimated inci-
dence of 6–24%.4–7 Accordingly, over 1 million
children in the United States may have voice disor-
ders.5 Although the clinical problem of childhood
dysphonia appears significant, attitudes of dys-
phonic children or their families concerning
voice-related physical, social/functional, and emo-
tional challenges have not been systematically
examined.
The dearth of information concerning the atti-
tudes of children with dysphonia may be a function
of the commonly held belief that dysphonic chil-
dren do not have an awareness8 or concern about
their vocal quality, and thus are not motivated to
seek or follow through on behavioral treatment.9,10
This belief may be based upon reports of a high rate
of voice misuse behaviors among children,9–12 and
an unawareness on the part of children of the puta-
tive linkage of phonotraumatic behaviors to vocal
Journal of Voice, Vol. 22, No. 2, 2008
pathology. That is, it may be believed that children
become dysphonic due to vocal misuse behaviors,
but are unaware of the resultant dysphonia and
thus unmotivated to change their behaviors. How-
ever, this appealing line of reasoning is not based
upon systematic investigations of the attitudes and
levels of awareness of dysphonic children or their
families regarding their voices. Because phonatory
disorders in children may have lasting negative ef-
fects, studies geared toward the understanding of
the potential challenges of childhood dysphonia
appear necessary toward the goal of developing
appropriate assessment tools for voice-related
quality of life (voice-related QOL) that are valid,
reliable, age-appropriate, and sensitive to change.
The paucity of research concerning voice-related
QOL in children may also be a reflection of the
view that children ‘‘outgrow’’ their dysphonia at
puberty. However, recent data show that vocal nod-
ules and voice complaints persist past puberty in at
least 21% of adolescents.13 Accordingly, the clini-
cal problem of childhood dysphonia is potentially
long lasting and children should be included in
models and studies of voice-related QOL.
Health-related quality of life (HR-QOL) is a mul-
tidimensional, subjective concept that broadly de-
scribes an individual’s well-being and satisfaction
with their health and health-related functioning in
daily life. For measurement purposes, HR-QOL
is generally partitioned into conceptual domains
that include physical, emotional, functional, or
other factors.14–17 Questionnaire instruments based
upon the conceptual domains allow access to the
patient’s perspective of their health. Prior to devel-
oping items for a questionnaire, however, it is crit-
ical to obtain an unbiased view of the attitudes,
feelings, and experiences of patients who live
with the health-related signs and symptoms of
interest.
A great deal of research has been performed con-
cerning HR-QOL and voice-related QOL in adult
populations.18–22 However, the general HR-QOL
of children has been understudied23–26 and voice-
related QOL research has followed a similar trend
of excluding children. The relative ‘‘invisibility’’24
of children in models and studies of voice-related
QOL may be due to the same types of factors that
affect the study of general HR-QOL. Among these
 ATTITUDES OF CHILDREN WITH DYSPHONIA
factors is the complexity of examining patients who
undergo such rapid developmental changes in such
a short period of time.24,25 Childhood is a period
of dynamic change and necessitates the use of
age-appropriate items in questionnaire instru-
ments.17,24,25 When developing an instrument to
study HR-QOL in children, a single instrument ver-
sion with static questions or questions designed for
an adult audience cannot be applied uniformly
across the childhood age range. Doing so would
be problematic because different components of
HR-QOL may be manifested or emphasized by
a toddler, a teenager, or an adult.24,25 However,
the task of developing multiple versions of an in-
strument for different ages is inherently complex
and must begin with interviews or focus groups of
children and their caregivers across the childhood
age range. Previous studies of voice-related QOL
in children geared toward instrument development
did not incorporate the essential step of interview-
ing children with voice disorders and their care-
givers, relied solely on parent proxy reporting,
and used a single set of questions for all children
between the ages of 2 and 18 years.27–29 These lim-
itations must be considered when interpreting the
results of these previous studies, and when using
the instruments derived from the research.
Our hypothesis was that voice-related functional,
emotional, and physical challenges would be ex-
pressed by dysphonic children and their families.
Furthermore, it was hypothesized that attitudes
and feelings expressed by Toddlers or their care-
givers (ages 2–4 years), Young Children (ages 5–7
years), School-Aged Children (ages 8–12 years),
and Adolescents (ages 13–18 years) would be quali-
tatively distinct from each other. Accordingly, the
aim of our study was to determine the impact of voice
disorders on lives of children from the perspective of
children and their caregivers.
METHODS
Focused interviews of 40 dysphonic children
(ages 2–18 years) and their parents or caregivers
were performed to determine the main components
affecting voice-related challenges. Ten children and
their parents/caregivers from each of the following
age groups were interviewed: (1) Toddler: 2–4
199
years old, (2) Young Child: 5–7 years old, (3)
School-Aged Child: 8–12 years old, and (4) Adoles-
cent: 13–18 years old. These age groupings coin-
cided with those from the PedsQL 4.0, a validated
measure of general HR-QOL.23,30 Inclusion criteria
included: (1) presence of at least mild dysphonia,
as assessed by a speech-language pathologist, for at
least the previous 6 months, (2) cognitive and/or lan-
guage skills that allow responses to structured inter-
views or written questionnaires, although limited
responses by toddlers were considered acceptable,
(3) effective speakers of English, and (4) free from
other comorbid conditions at time of interview. Prior
voice treatment or medical/surgical management for
laryngeal diseases or disorders was not exclusionary.
Subject characteristics for each age group are found
in Table 1.
The Toddlers and Young Children were inter-
viewed together with their caregivers. Caregivers
consisted of a parent or guardian for 37 of the 40
children interviewed. For one child in the Young
Child group, a teacher, rather than a parent, was in-
terviewed. In the Adolescent group, the parents of
two adolescents were not available to participate
in the interviews.
School-Aged Children and Adolescents were in-
terviewed independently from caregivers. Children
were: (1) patients who presented to the Pediatric
Otolaryngology Clinic at the University of Wiscon-
sin or the University of Utah with chronic hoarse-
ness, (2) children referred via the Madison
Metropolitan School District (MMSD; Madison,
WI), or (3) children who were recruited via flyers
placed in the waiting room of a general pediatrics
clinic. All children agreed to participate after in-
formed consent was obtained from their parents/
guardians. Interviewers were speech-language pa-
thologists at the University of Wisconsin or Univer-
sity of Utah. Prior to the start of data acquisition,
a presentation and training session was provided to
all involved clinicians regarding study procedures,
interview techniques, and recording methods. Eight
speech-language pathologists participated in the
interviews. Seven of the eight speech-language
pathologists specialized in voice disorders, while
one interviewer was a student clinician.
Medical diagnosis and etiology of the dysphonia
were not controlled or stratified, and were not
Journal of Voice, Vol. 22, No. 2, 2008
200 NADINE P. CONNOR ET AL

TABLE 1. Subject Characteristics in Each Age Group

Mean Age Gender Diagnoses Dysphonia Severity
(SD) Distribution (Number of Subjects) (Number of Subjects)

Toddler (ages 2–4 years) 3.6 (0.82) Six males, Vocal nodules: 7 Mild: 2
four females Unspecified chronic Mild-moderate: 1
dysphonia: 3 Moderate: 6
No rating: 1
Young Child 6.3 (0.91) Seven males, Vocal nodules: 6 Mild: 2
(ages 5–7 years) three females Papillomatosis: 2 Mild-moderate: 1
Unspecified chronic Moderate: 2
dysphonia: 2 Moderate-severe: 4
Severe: 1
School-Aged Child 9.9 (1.4) Five males, Vocal nodules: 4 Mild: 3
(ages 8–12 years) five females Papillomatosis: 2 Mild-moderate: 2
Chronic tonsillitis: 1 Moderate: 4
Vocal fold cyst: 1 Moderate-severe: 1
Reflux laryngitis: 1
Unspecified chronic
dysphonia: 1
Adolescent 15.6 (1.5) One male, Vocal nodules: 4 Mild: 5
(ages 13–18 years) nine females Papillomatosis: 1 Moderate-severe: 4
Vocal fold paralysis: 2 Severe: 1
Mixed connective
tissue disease: 1
Unspecified chronic
dysphonia: 1
Diagnoses, when available, were provided by the pediatric otolaryngologists involved in the clinical care of the patients. Dysphonia
ratings were performed by the speech-language pathologist performing the interview during the live interview session.

obtained for the MMSD participants. We did not
limit participation to particular dysphonia etiolo-
gies because our intention was to allow acquisition
of a broad range of perspectives.
A preliminary conceptual model was incorpo-
rated into this work that was similar to a model
used by others in voice-related outcomes in dys-
phonic adults.20 The conceptual model included
three domains: (1) impact of voice on child’s phys-
ical functioning, (2) impact of voice on child’s so-
cial/functional aspects combined, and (3) impact of
voice on child’s emotional functioning. Initial
structured interviews of dysphonic children and
their parents focused on these empirical domains
as related to voice symptoms, difficulties faced in
various activities and with various people due to
the voice disorder, other related problem areas,
and environmental or behavioral covariables.
A constant set of instructions was read to all sub-
jects: ‘‘We are going to have a conversation for
about 15 minutes. What we would like to talk about
is your (your child’s) scratchy (hoarse) voice and
how that might or might not be a problem for you
(your child) and your family. Please feel free to
give us lots of examples and descriptions of how
you feel because that is what we are interested in
here – your opinions and experiences.’’
An interview script, shown in Table 2, was devel-
oped to guide the focused interviews, but questions
were not read to subjects and the exact wording and
emphasis within the questions varied. Throughout
the interviews, the speech-language pathologist in-
terviewers developed a rapport with the subjects
and encouraged children and parents to provide ap-
propriate responses whether ‘‘yes/no,’’ narrative-
style scenarios, anecdotes, or other descriptions of
how they felt about the voice disorder and how it
affected their function, school performance, and
family interactions. After each subject’s response,
the interviewer probed further with follow-up

Journal of Voice, Vol. 22, No. 2, 2008

 ATTITUDES OF CHILDREN WITH DYSPHONIA 201

TABLE 2. Interview Script Items by Conceptual Domain

Physical Social/Functional Emotional

 Does your throat hurt when you talk?  Do people ask what is ‘‘wrong’’  Does your scratchy (hoarse) voice make
(or, Do you get a sore throat when with your voice? you feel sad or angry?
you talk?)  Do kids tease you or comment on  Does your voice make you feel badly or
 If a sore throat is a problem for you your voice? frustrated or embarrassed?
when you talk, what do you do?  Do people, like your parents or  Does your scratchy voice make you
 Is your voice better if you eat certain teachers, ask you to use a quieter worry that you are sick?
foods, voice or ‘‘bug’’ you about using a  What is the biggest problem you have
or if you keep yourself from eating or quieter voice? related to your voice? (sore throat,
drinking certain things?  If people ask you to use a quieter run out of air, use a lot of energy to
 Do you have a hot or burning sensation voice, how does this make you feel? talk, can’t depend on my voice
in your throat sometimes? How often?  Does your voice sound different than working, feel ‘‘different’’
 What is the biggest problem you have your friends or other kids at school? from other kids)
related to your voice? (sore throat,  Do you have speech or voice therapy?  Is there anything that you would
run out of air, use a lot of energy to Do you have speech or voice like to tell me about your voice?
talk, can’t depend on my therapy at school?
voice working, feel ‘‘different’’ from  Does it make you feel good or
other kids) bad to get extra help from your
 Is there anything that you would like teacher or speech-language
to tell me about your voice? pathologist?
 What is the biggest problem you have
related to your voice? (sore throat,
run out of air, use a lot of energy to
talk, can’t depend on my voice
working, feel ‘‘different’’ from
other kids)
 Is there anything that you would
like to tell me about your voice?
When parents were interviewed, ‘‘your child’’ was substituted for ‘‘your.’’ After each subject’s response, the interviewer probed fur-
ther with follow-up questions, including ‘‘How does this make you feel?’’ ‘‘How do you usually react to this (What do you do)?’’
‘‘Has this changed the way you do things at school (or home, or specific environment being discussed)?’’ Questions in italics were
general questions that fell into each of the 3 conceptual domains.

questions, including ‘‘How does this make you
feel?’’ ‘‘How do you usually react to this (What
do you do)?’’ ‘‘Has this changed the way you do
things at school (or home, or specific environment
being discussed)?’’
All interviews were audiorecorded on a Sony
portable minidisc recorder (Model # MZ-B50;
Sony, New York, NY) placed on the examination
room desk with an omnidirectional microphone. In-
terviews were then transcribed. Transcripts were re-
viewed by the investigators to develop a content
analysis of the major themes revealed by the chil-
dren and their parents. To perform the content anal-
ysis, a chart was created using commercially
available spreadsheet software (Microsoft Excel
2003; Microsoft, Redmond, WA) that had questions
represented in columns, and respondents in rows.
Separate spreadsheets were created for parents
and child/adolescent respondents for each of the
four age groups, resulting in eight separate spread-
sheets. Responses from children and parents to each
question were read from the individual transcripts
and then charted on the spreadsheet either as affir-
mative or negative when ‘‘yes/no’’ questions were
asked (for example, ‘‘Does your throat hurt when
you talk?’’) or with key content words when narra-
tive answers were requested (for example, ‘‘If
a sore throat is a problem for you when you talk,
what do you do?’’; a frequent response was ‘‘drink
water,’’ which was entered into the spreadsheet in
the appropriate row and column). Three of the in-
vestigators (NPC, SBC, DGH) performed the

Journal of Voice, Vol. 22, No. 2, 2008

202 NADINE P. CONNOR ET AL

content analysis separately. Reliability analyses
were performed by a fourth author not involved in
the initial review (DMB) by reviewing two ran-
domly selected interviews from each of the age
groups. As such, eight interviews were reviewed
again for reliability. Percent agreement of the reli-
ability analysis with the original review was 87.5%.
Trends across responses were evaluated as the
percentage of ‘‘yes’’ responses to the ‘‘yes/no’’
questions asked of each child and parent. Percent
agreement between parent-child dyads was calcu-
lated for each yes/no question for the School-
Aged Children and Adolescents. Due to the nature
of this qualitative analysis, no statistical tests were
performed.
RESULTS
Children within the Toddler and Young Child
groups were interviewed together with their parents
or caregivers. We performed these interviews
jointly to reduce any potential anxiety within the
children and adults participating in the study. As
such, the same questions were often not repeated
to both parents and children, and thus did not allow
acquisition of responses from both parents and chil-
dren to a common question. For the Toddlers and
Young Children, the conversational transcripts did
not allow the opportunity to reliably assess corre-
spondence between child and parent responses to
questions. This was a limitation of the interview
methodology not found for the School-Aged Chil-
dren and Adolescents, because interviews with par-
ents or caregivers were performed separately from
those conducted with the child or adolescent. The
result of performing separate interviews was that
all questions were asked, the child’s/adolescent’s
perspective could be obtained without involvement
from the parents/caregivers and correspondence of
responses could be assessed.
As shown in Table 3, the interviews yielded a se-
ries of consistent themes within each of the concep-
tual domains. For the physical domain, consistent
themes were focused on the increased effort used
to produce voice and limitations in activities due
to voice. Across age groups, 32.5% of children
drank water to help alleviate the voice problem or
associated sore throat. Social/functional domain

TABLE 3. Results: Summary of Themes by Conceptual Domain Across Age Groups

Physical Social/Functional Emotional

 Can’t be heard
 Can’t sing (high notes)
 Sore throat associated with voice
 Voice ‘‘cuts out’’
 Drinking water helps voice
 ‘‘Runs out of air’’
 Increased effort for voicing
(must ‘‘push to get voice out’’);
strain
 Hot burning sensation in throat
 Sometimes voice ‘‘does not work’’
 Tired of answering questions about voice  People ask what is wrong with child’s voice
 Voice is different from peers  Reports of anger, sadness, depression,
 Not wanting to sound like a smoker irritation, nervous (re: not being able to
 Social exclusion because people can’t participate in activities)
understand them  Reports of embarrassment due to voice
 Afraid or hesitant to participate in class  Reports of reductions in self-esteem
(reading aloud is bothersome)  People laugh when voice is ‘‘squeaky’’
 Fear of ‘‘sounding dumb’’  Does not like the sound of own voice
 Other kids tease the dysphonic child by  Frustration experienced due to voice
attempting to imitate
 ‘‘Missing out on things’’ due to voice
 Receives undue attention due to voice
 Toddlers, Young Child, and School-Aged
groups asked to use quieter voice
 Adolescents asked to ‘‘speak up’’
 Children and others comment that the
child’s voice sounds hoarse or scratchy
 Others can’t understand the child, which
leads to frustration, behavior problems
 Talking on the phone is uncomfortable

Journal of Voice, Vol. 22, No. 2, 2008

 ATTITUDES OF CHILDREN WITH DYSPHONIA 203

themes were centered on altered peer interactions
associated with the dysphonia and fears of appear-
ing different from peers, which may contribute to
hesitation in participating in classroom activities.
Within the emotional domain, feelings of anger,
sadness, embarrassment, depression, irritation, ner-
vousness, and reduced self-esteem were expressed.
Results specific to each age group are discussed
below.
Toddler (ages 2–4 years)
In the Toddler interviews, we relied to a large ex-
tent on the parent interview. For one subject, the
parent was the only respondent although the child
was directly addressed. For the remaining nine tod-
dler subjects, short responses (range of 1–20 words
per response) were received and integrated into our
findings.
Most parents (60%) felt that their children were
not aware of their dysphonia. When asked to iden-
tify the biggest problem or concern associated with
their child’s voice, parents’ responses fell into the
physical domain with reports of sore throats and
running out of breath when speaking. Parents also
expressed concern that their child’s voice sounded
hoarse or scratchy and that other people tended to
comment on the voice disorder. One mother of
a toddler commented, ‘‘Grandma teases us that
we give her [the child] too many Camels [ciga-
rettes] – that she [the child] sounds like a smoker.’’
As shown in Figure 1, the most frequently ex-
pressed concerns appeared to be in the emotional
and social/functional domains for toddlers. Specif-
ically, 70% of toddlers and parents felt that their
child’s voice was different from other children,
while feelings of sadness, anger, frustration, or em-
barrassment related to the voice were shown by
30% of children.
All of the parents of toddlers (100%) reported
that they and the child’s day care providers fre-
quently asked the toddlers to be quieter or to use
a quieter voice. The toddlers confirmed this obser-
vation with 78% of respondents indicating that they
were frequently asked to use a quiet voice. Yelling
reportedly resulted in greater impairments in voice
quality. One parent noted, ‘‘He strains his voice and
that’s one thing that’s been recommended – that we
try to have [him] use a quiet voice.’’
Parents expressed that listeners appear to have
difficulty understanding the child and that the voice
disorder appears to contribute to frustration and be-
havior problems. One parent was frustrated that the
child’s pediatrician was not responsive to questions
regarding the dysphonia, indicating that she could
not get any ‘‘attention’’ or ‘‘airplay’’ directed to-
ward the voice disorder. Another parent commented

Responses to Interview Questions

Toddler
Young
100% School-Age
Adolescent
80%
Percent "Yes"

60%

40%

20%

0%
E E E P P SF SF SF SF
Sad? Angry? Voice different Worry you are Throat hurt? Hot, burning Certain foods People ask Kids tease or Do people
Frustrated? from other sick because Sore? sensation? affect voice? about voice? comment? want you to
Embarassed? kids? of voice? use quieter
voice?

FIGURE 1. Percent of subjects who answered ‘‘yes’’ to questions are summarized on the x-axis (complete
questions may be found in Table 2). For toddlers, combined responses from parents and children were
counted, whereas only responses from children are shown for the Young Child, School-Aged Child, and
Adolescent groups. E 5 emotional domain; P 5 physical domain; and SF 5 social/functional domain.

Journal of Voice, Vol. 22, No. 2, 2008

204 NADINE P. CONNOR ET AL
that she was told that her child had to have general
anesthesia for an endoscopic examination of the vo-
cal folds, and that she considered general anesthe-
sia to be a barrier to obtaining an examination.
She was frustrated when she learned that there
were other options because she had invested in
three previous physician appointments for her child
before the endoscopic examination was performed.
Three children had seen a speech-language pathol-
ogist for the voice problem, or for other communi-
cative disorders, such as language impairment. It is
possible that participation in voice treatment may
have affected or altered perception of the voice dis-
order in these participants.
Two children were taking medication for gastro-
esophageal or extraesophageal reflux.
Young Child (ages 5–7 years)
Much greater interview participation was re-
ceived from the children within this age group dur-
ing the interviews. Utterance length ranged from 1
to 47 words across children and responses were al-
ways received when requested in the conversational
give and take. Parents and children were inter-
viewed together for this age group but very little in-
put was received from the parents during interview
sessions, presumably due to adequate participation
from the children themselves. In one instance,
a teacher rather than a parent was interviewed
with a child. An emerging awareness of the dyspho-
nia was observed by one parent, who commented,
‘‘. he brings it up once in a while, but he is
more curious saying, ‘Sometimes my voice does
not work right.’’’
The biggest concerns in this age group were
physical, including running out of air and difficulty
initiating voice without a great deal of effort (de-
scribed as ‘‘hard to push the voice out’’). Children
also noted that sometimes the voice ‘‘didn’t work,’’
and they experienced a sore throat associated with
voicing. One young boy commented, ‘‘. some-
times when I talk, I can’t even talk.’’ Four of the
children received relief from some of these factors
by drinking water. Fifty percent of the children re-
ported a sore throat associated with voice use.
As shown in Figure 1, 50% of the children indi-
cated that they were saddened, angered, or frus-
trated by their voice. Half of the children
Journal of Voice, Vol. 22, No. 2, 2008
indicated that other people asked them about or
commented on their voices. Approximately 50%
of the children felt that their voice was different
from that of their peers. With regard to using
a loud voice, 80% reported that adults routinely
asked them to use a quieter voice. A hot or burning
sensation in the throat was reported by 40% of chil-
dren in this age group. Five children saw a speech-
language pathologist for their dysphonia or other
communicative disorder. Use of medication for gas-
troesophageal or extraesophageal reflux was not
noted for any child.
School-Aged Child (ages 8–12 years)
Children and parents were interviewed sepa-
rately. When asked to list their biggest concerns re-
lated to voice, children listed physical concerns,
such as ‘‘getting the voice out,’’ soreness in the
throat associated with voice use, and running out
of air. One child with a moderate voice disruption
and vocal fold nodules commented, ‘‘I didn’t like
the sound of it and how it sounded when I talk.
When I breathe and [when I am] talking it just stops
right in the middle of a sentence.’’ When asked how
he felt when his voice ‘‘stops,’’ this child re-
sponded, ‘‘I feel mad.’’ Another child noted,
‘‘.sometimes I lose my voice completely and I
get frustrated because I’m like ‘ahhhhhh,’ and noth-
ing comes out.’’ However, as shown in Figure 1,
only 40% of these children reported feeling sad-
dened, angered, frustrated, or embarrassed by their
voice disorder.
As shown in Figure 1, 70% of children reported
a sore throat associated with voice use. When asked
what strategies were used for the sore throat, 60%
reported drinking water to help improve their voice
quality or make their throat feel better. A hot or
burning sensation in the throat was noted by 60%
of children in this age group. Three children were
taking medications for gastroesophageal or laryng-
opharyngeal reflux. Sixty percent had seen
a speech-language pathologist for treatment of the
voice disorder.
In the social/function domain, 60% of children in
this age group reported that others commented on
their voices. Questions from their peers included in-
quiries about whether vocal nodules were conta-
gious, or simply ‘‘Why can’t you talk?’’ For the
 ATTITUDES OF CHILDREN WITH DYSPHONIA
dysphonic school-aged child, comments by others
about the voice were sometimes associated with
feelings of embarrassment, nervousness, and fear
to participate in class because the ‘‘voice will
give out.’’ Forty percent of the school-age children
reported those feelings. Children who expressed
frustration with their voices and were hesitant to
participate at school also felt that they were missing
out on things because of their voices. Children also
commented that it was bothersome to them to read
aloud in class. A parent expressed annoyance at
comments from the public about her daughter’s
‘‘sexy voice,’’ because the parent felt it was inap-
propriate to describe a young child in that manner.
Another parent noted, ‘‘It makes him sad because
he wants to talk like normal kids and not be hoarse
all of the time.’’ Some incidents were described
where the child received undue attention due to
voice or felt ‘‘humiliated’’ at school by substitute
teachers who did not understand the child’s vocal
limitations. Eighty-nine percent (8/9) of children
reported that they felt their voice was different
from voices of their peers.
Ninety percent of children were asked to use
a quieter voice. One child with recurrent respiratory
papillomatosis was frequently asked to ‘‘speak up.’’
Another parent mentioned that her child would not
use a voice amplifier at school due to the attention
that the amplifier brought to him. One parent com-
mented, ‘‘Just wave a magic wand and make it go
away.’’
In contrast to the concerns voiced by most of the
children, one child with a moderate voice disorder
and vocal fold cyst was very clear that his voice
disorder was not important in his life. This child
said, ‘‘What doesn’t matter to me is cause I got
something wrong in my vocal folds. And the thing
that matters to me is ‘nothing.’ It never hurts, it
never does anything. Frankly, I didn’t even know
it was there before I came here and nobody said
it was there. It basically never mattered to me.
Well, it mattered to me, but it’s really never done
anything to change me.’’ This child did not like at-
tending voice therapy, commenting, ‘‘I really don’t
like leaving school in the middle of the day to come
to see anybody. No offense to you.’’
Percent agreement between children and parents
to questions ranged from 33.3% for the question
205
‘‘Do you have a hot or burning sensation in your
throat sometimes?’’ to 83.3% for the question
‘‘Does your voice sound different than your friends
or other kids at school?’’
Adolescent (ages 13–18 years)
When asked to identify the biggest problem with
their voices, the adolescents focused on physical
factors, such as an inability to be heard, a sore
throat, difficulty singing, and increased effort for
talking. Sixty percent of the adolescents were in-
volved in aspects of vocal performance (one adoles-
cent was a cheerleader) and the dysphonia
interfered with their activities.
As shown in Figure 1, the most frequently ex-
pressed concerns were in the emotional domain, in-
cluding feelings of sadness, nervousness, anger,
embarrassment, or frustration (80%) and reports
that the voice was different from that of peers
(90%). A negative effect on self-esteem was espe-
cially noted by one adolescent. Frustration at hav-
ing repeated surgeries was noted for the subjects
with recurrent respiratory papillomatosis. Fear of
not being able ‘‘to get words out’’ was also ex-
pressed. Being left out of things or feeling isolated
was associated with frustration for adolescents. One
parent noted that people tended to leave her adoles-
cent out of conversations because they could not
understand her when she responded. The parent
said, ‘‘It is a big deal if you can’t communicate.
You don’t mean to leave her out, but it is hard to
communicate with someone you can’t understand.
She can’t communicate with people and that makes
her insane.’’
Social/functional factors that were expressed in-
cluded fear that people would laugh when the voice
was ‘‘squeaky.’’ One adolescent expressed that she
did not want to sound like a smoker. Eighty percent
of the adolescents reported that people often asked
them about their dysphonia, and found it ‘‘tiring’’
to continue answering questions about their voice.
One adolescent commented, ‘‘. sometimes people
will ask if I’m sick or something and sometimes I
say ‘yes’ because I don’t want to explain the whole
thing.’’
Forty percent of adolescents reported a sore
throat associated with voice use, and felt that drink-
ing water helped to alleviate the problem. One
Journal of Voice, Vol. 22, No. 2, 2008
206 NADINE P. CONNOR ET AL
adolescent with vocal fold nodules and a mild dys-
phonia noted, ‘‘It just hurts right along my vocal
cords, right along my throat and when I talk you
can feel it hurting, but sometimes you get so caught
up in what you are talking about you can’t feel it.’’
Only two adolescents were asked to use quieter
voice, while three adolescents were frequently asked
to ‘‘speak up.’’ One adolescent with vocal paralysis
indicated, ‘‘Sometimes my teachers will tell me to
talk louder and I would tell them that I can’t.’’
Sixty percent of the adolescents in our sample
saw a speech-language pathologist for treatment
of the voice disorder. A parent mentioned that their
adolescent would not use a voice amplifier because
she did not wish to draw attention to her voice
problem. Two adolescents were taking medication
for gastroesophageal or extraesophageal reflux,
and one adolescent practiced behavioral manage-
ment techniques for these conditions.
Percent agreement between adolescents and par-
ents to questions ranged from 37.3% for the ques-
tion ‘‘Does your scratchy voice make you worry
that you are sick?’’ with both 40% of children
and parents answering ‘‘yes,’’ to 100% for the ques-
tion ‘‘Does your voice sound different than your
friends or other kids at school?’’
DISCUSSION
Through focused interviews of dysphonic chil-
dren and their families, we found that chronic dys-
phonia negatively affects the lives of children
across the domains of physical, social/functional,
and emotional performance. Across all age groups,
children and adolescents expressed that their voices
were different from their peers, and that people
tended to comment about their dysphonic voices.
Accordingly, a large proportion of our sample of
40 children expressed concerns and an awareness
of their dysphonia, including children as young as
6 years old. These findings are in contrast to the
commonly held belief that young or school-aged
children do not appear aware of or concerned about
how their voices sound.8,9 This belief, therefore,
appears suspect and suggests that careful examina-
tion, in a systemic fashion, of all elements and be-
liefs in the treatment of childhood dysphonia must
be subjected to systematic investigation.
Journal of Voice, Vol. 22, No. 2, 2008
Importantly, specific dysphonia-related attitudes
expressed by children and parents varied across
the childhood age range. For instance, children in
the Toddler, Young Child, and School-Aged Child
groups were frequently asked to speak more qui-
etly, while adolescents were not. The reasons for
this difference are unclear, but could possibly be at-
tributed to qualities that may be inherent in adoles-
cents, such as shyness, or to differences in the
gender or diagnosis distributions among the child
and adolescent groups. Specifically, the Adolescent
group was largely female, in comparison to the
other age groups, and also contained two partici-
pants with vocal fold paralysis, that is often associ-
ated with a quiet, breathy voice quality. Young and
school-aged children also complained more fre-
quently of a sore throat associated with voicing
than adolescents, or as reported by the parents of
toddlers. In the adolescents, a large increase in
the frequency of reports of anger, sadness, embar-
rassment, or nervousness due to the voice was
found relative to the other age groups. As such, re-
ductions and concerns related to physical function-
ing were most dominant in toddlers, young
children, and school-aged children. While physical
function was an important element in adolescents,
concern was also expressed related to social isola-
tion, anger, sadness, and embarrassment. Accord-
ingly, it is clear that qualitative differences in
voice-related challenges are present across the age
range. Therefore, these challenges should be
viewed dynamically throughout childhood and
adolescence. When developing an instrument for
measuring voice-related QOL, a static set of
questionnaire items intended for all ages will not
properly reflect the changes in voice-related atti-
tudes present across the age range. Age-appropriate
items are necessary.
Using accepted criteria for defining HR-QOL
and disease-specific quality of life, it is critical to
actually obtain the patient’s perspective as part of
the validation process. The child’s perspective has
been lacking in pediatric health services research,
in general, and also specifically in the study of
voice-related QOL.16,25 The differences in parent
and child responses in this study imply that the
child’s perspective is critical to understanding
the impact of the dysphonia. The first step in
 ATTITUDES OF CHILDREN WITH DYSPHONIA
development of a validated, child-centered instru-
ment that addresses HR-QOL is focused interviews,
either individually or in groups, with children who
represent the affected population, and techniques
for performing these interviews have been de-
scribed,31 including effective methods for use
with young children32,33 and for addressing com-
municative impairment in children.34 This impor-
tant first step was not performed in previous work
concerning the development of voice-related QOL
instruments for use in pediatric populations.27–29
Without actually asking for and obtaining patient
attitudes, a valid measure of disorder-specific qual-
ity of life may not be obtained.17 As noted recently
by Ronen et al35 ‘‘Without including children in the
main stage of HR-QOL research, we believe that
children’s fundamental beliefs, feelings, and under-
standing of their disorders and their interface with
society might not be revealed.’’ While the proce-
dures for obtaining these attitude data are rigorous,
reiterative, and laborious, there is no substitute or
shortcut. Listening to and incorporating the pa-
tient’s perspective is a critical part of the process.
Although it is tempting to rely on our own experi-
ences as clinicians working daily with these pa-
tients,36 we may be surprised at the influence of
our own biases in item development. Adults and
children have a fundamental difference in what
constitutes quality of life.17
Prior work examining voice-related QOL has re-
lied solely on use of parent reporting.27–29 The use
of parent proxy reporting alone for obtaining
measures of HR-QOL is controversial because the
responses of children and their parents have not
been found to match in prior research studies of
HR-QOL25,37–39 or in this study. As stated in a re-
cent review article, ‘‘the paucity of self-report data
remains a problem in studying health outcomes in
younger children.’’25 Disparities have been found
among self-reports by children, adolescents, and
their parents, teachers and health care providers,
both for healthy children and for children with
chronic diseases.16,37,38 As suggested by Eiser
(1997), the basis for this cross-informant variance17
may be due to differences between adults and chil-
dren in their understanding of health, illness, and
treatment. On the other hand, valid and reliable par-
ent proxy responses can be valuable because parent
207
perceptions of the child’s HR-QOL are influential
in whether or not treatment for the health condition
is sought in the first place, and young children or
those with severe illness may not be able to com-
plete the measure. As such, both patient self-report
and parent proxies should be used in parallel.16
This study is the first step in developing a valid,
reliable, responsive, and age-appropriate instrument
for measuring voice-related QOL in children and
adolescents. We aim to develop distinct versions
of the instrument for both parent proxy and child
response for each of the age groups reported in
this study, except for the toddler instrument that
will rely solely on parent proxy. Interviews of dys-
phonic children and their caregivers demonstrated
that across the age range children experience reduc-
tions in vocal functioning and potentially in voice-
related QOL. Because there is a dearth of research
concerning the effect of dysphonia on the lives of
children, the implications of these findings are sig-
nificant. For instance, the impact of a voice disorder
on a child’s life may be underestimated and thus
may contribute to delays in seeking intervention
for the voice disorder. Such delays in seeking
help may result in a chronic voice disorder that
limits scholastic, social, and occupational opportu-
nities and negatively influences the perceptions of
others regarding the dysphonic individual. Further-
more, knowledge of factors that influence the lives
of children has implications for developing focused
interventions geared toward improvement of the
well-being of children.16
Acknowledgments: The authors are grateful for the as-
sistance of Ms. Chris Gustafson, Dr. J. Scott McMurray,
Dr. Marshall Smith, Dr. Doug Montequin, Dr. James
Varni, Dr. Tasha Burwinkle, Ms. Amy Kramer, Ms.
Cara Sauder, Dr. Kristine Tanner, and Ms. Melissa
Buchanan in the completion of this work. This study
was supported by a grant from the National Institute of
Deafness and Other Communication Disorders
(R03DC04943).
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