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Pediatr Dent. Author manuscript; available in PMC 2021 May 15.
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Published in final edited form as:

Pediatr Dent. 2020 November 15; 42(6): 430–435.

Oral Care Experiences and Challenges for Children with Down

Syndrome: Reports from Caregivers
Leah I. Stein Duker, PhD, OTR/L [Assistant Professor of Research],
Chan Division of Occupational Science and Occupational Therapy at the Ostrow School of
Dentistry, University of Southern California, Los Angeles, CA.

Marinthea Richter, OT [OTD Student],

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Division of Occupational Science and Occupational Therapy at the Ostrow School of Dentistry,
University of Southern California, Angeles, CA.

Christianne J. Lane, PhD [Associate Adjunct Professor of Research],

Department of Preventive Medicine, University of Southern California, Los Angeles, CA,

José C. Polido, DDS, MS [Division Head – Dentistry, Associate Professor of Clinical

Dentistry],
Children’s Hospital Los Angeles

Ostrow School of Dentistry of the University of Southern California, Los Angeles, CA,

Sharon A. Cermak, EdD, OTR/L [FAOTA Professor, Professor of Pediatrics]

Chan Division of Occupational Science and Occupational Therapy at the Ostrow School of
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Dentistry,

USC Keck School of Medicine, University of Southern California, Los Angeles, CA,

Abstract
Purpose: The purpose of this study was to investigate the oral care experiences and challenges
encountered by children with Down syndrome.

Methods: Participants were 372 parents of children with Down syndrome 5–14 years of age.
Parents completed a 48-item questionnaire designed by the authors to elicit information about oral
care in the home and dental office. Descriptive statistics were used to examine oral care variables.

Results: Parents reported difficulty across almost all oral care variables, including oral care in
the home, oral care at the dentist, and access to oral care. Approximately one-third of parent
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respondents reported that toothbrushing was difficult and that brushing occurred 4 or less days a
week. Over half of the respondents reported it was difficult to have a dental professional clean
their child’s teeth, that uncooperative behaviors and sensory sensitivities increased in the office,
and that those behaviors and sensitivities made care challenging. The majority of respondents
reported having a dental home for their child, but that it was difficult locating their dentist, and that
finances limited visits.

Correspond with Dr. Stein at LStein@chan.usc.edu.

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Conclusions: This study suggests that children with Down syndrome experience difficulties and
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barriers to care in both the home and dental office settings.

Keywords
Down syndrome; Oral health; health promotion; dental care; access to care; Down syndrome;
barriers to care

Ensuring adequate oral health care is essential for physical and psychological well-being and
is a global health priority.1,2 Poor oral health and the diseases that may result can lead to
difficulties with eating, speech, pain, sleep, school attendance, social acceptance and self-
esteem, causing a dramatic effect on health and quality of life.1,3–7 However, certain
populations, such as children with special health care needs (CSHCN), are almost twice as
likely to have unmet oral health care needs compared to peers without special needs8 and
have an increased prevalence of dental disease.9
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Children with Down syndrome (DS), a common chromosomal abnormality occurring in one
in approximately 700 live births in the United States,10 are one such group of CSHCN at
greater risk for poor oral health, characterized by greater severity and earlier onset of
periodontal disease.11–13 Factors which may contribute to these oral health challenges
include differences in oral morphology, malocclusions, decreased salivary rates, cariogenic
diets and medications, bruxism, and immunological factors.11–15 Additionally, individuals
with DS are reported to have poor oral hygiene,12,16 and may also exhibit challenges
cooperating during oral care which hinders the delivery of professional dental care.17–20

Uncooperative behaviour during dental care coupled with comorbid medical conditions,
poor oral health, and susceptibility for periodontal disease places individuals with DS at an
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increased risk for lifelong poor oral health outcomes such as tooth extraction and infections,
as well as other expensive restorative work under general anesthesia that may present
increased health risks due to comorbid conditions.17,19,21,22 Additionally, surgery and dental
treatment were the most common reasons for hospitalization of individuals with DS.23

Although much is known about periodontitis as related to DS, minimal research has been
conducted about the common barriers to preventive oral health care that are experienced by
this population. As such, this study aims to investigate the oral care experiences and
challenges encountered by children with DS using parental questionnaire data.

Methods
This study was approved for human subjects by the Institutional Review Boards of the
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University of Southern California (HS-15–00218) and Children’s Hospital Los Angeles

(CHLA-15–00047).

Instruments
The Dental Care in Children Survey24,25 was designed to elicit information from parents
regarding their child’s experiences with oral care in the home and dental office. For this
study, the survey was updated to include three DS-specific questions, three general oral-

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health questions, and five questions about families’ oral health practices and knowledge (a
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copy of the survey may be requested from the first author). The survey consisted of 48 items
and included dichotomous yes/no answers, Likert-scale questions, and open-ended questions
to obtain qualitative information. Survey questions inquired about: frequency of tooth-
brushing, barriers to oral care, children’s responses to routine dental treatment, and use of
restraint and/or pharmacological methods for routine dental treatment. Participant
demographics (age, sex, race, ethnicity, communication level, and parent education) were
also collected.

Procedures
Using convenience sampling, recruitment emails were sent throughout the United States to
DS-specific organizations, private disability-specific schools, occupational therapy clinics,
and Regional Centers, requesting that the organizations disseminate recruitment flyers and
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the online survey web address.

Data Analysis
Data were analysed using SPSS software v.25 (IBM Corp., Armonk, NY USA). For
descriptive purposes, frequencies and percentages were calculated for each of the
demographic and oral care variables.

Results
Of the 391 surveys completed, 372 were included in the analyses; 19 responses were
excluded because respondents did not confirm that their child had a diagnosis of DS.
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Participants
Participants were 372 parents of children 5–14 years of age with DS who responded to an
online survey. Children with DS had a mean age of 8.7 years, were predominantly male
(66%), and Caucasian/white (78%), and approximately half the sample self-identified as
Hispanic or Latino (see Table 1). Children primarily were reported to communicate using
single words/phrases (38%) or sentences (33%). See Table 1.

Participant Oral Health

Approximately 50% of the parent respondents reported that their children had habits which
may impact their child’s teeth, including: pica (50%; n=186), bruxism (58%; n=215), and
pocketing food in their cheeks while eating (46%; n=171); approximately half of parents
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also stated that their child experienced temporal mandibular joint dysfunction or jaw pain
(48%; n=179). Approximately 70% of children had either state or private dental insurance.

Children’s oral health was most commonly reported as good (57%; n=212) or poor (39%;
n=146), with few parents endorsing that their child’s oral health was excellent (2%; n=9).
Despite the majority of parents reporting good oral health, over 40% of parents also reported
that their child had experienced three or more: primary teeth cavities (61%; n=227),

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permanent teeth cavities (54%; n=201), primary teeth pulled due to decay (52%; n=193),
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and/or permanent teeth pulled due to decay (52%; n=193). Parents also reported an average
of 13 (±8) days of missed school or activities due to dental-related pain or discomfort, and
8% (n=28)stated that at some time their child had tooth decay that led to problems in eating
or speaking.

Oral Care at Home

Parents reported that their children’s teeth were brushed an average of 11 (±5) times per
week, with over 80% (n=300) of parents reporting that they provided some or complete
physical assistance for toothbrushing. However, almost 50% of parents reported that
children’s teeth were not brushed every day in a week, and almost 30% reporting brushing
only 4 or fewer days per week. Over 60% (n=226) of parents reported that toothbrushing
was difficult on a daily basis, with reasons being that their child disliked the feeling of the
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toothbrush in his/her mouth (39%; n=145), disliked the taste or texture of toothpaste (31%;
n=114), gagged during toothbrushing (19%; n=71), or that their child’s gums bleed (7%;
n=24).

Oral Care at the Dentist

Almost 60% (n=222) of parents agreed or strongly agreed that their child received high
quality care from the dentist. However, 38% (n=140) of parents also reported that they
believed that their child’s diagnosis made the care received at the dentist more challenging,
and 64% (n=239) reported that their child would be uneasy or afraid if they had to go to the
dentist tomorrow. Parents reported that dental practitioners used physical restraint sometimes
(58%; n=215) or often (26%; n=96) for routine preventive dental visits. Fifty-one percent
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(n=190) of parents reported that general anesthesia, sedation, or other drugs had been used
for routine preventive dental visits; reasons, provided by the practitioner to the parent,
included the child’s extreme anxiety (71%), behavioral difficulties (51%), and/or an inability
to cooperate with the dental provider (26%).

Almost 70% (n=256) of parents reported that their child’s anxiety or response to dental care
discouraged them from taking their child to the dentist for regular check-ups. Likewise,
based on their child’s reactions or behaviors at the dentist, over 80% (n=306) of parents
believed that it was moderately-to-extremely difficult to have a dental professional clean
their child’s teeth. Fifty percent (n=185) of parents agreed that their child’s uncooperative
behaviors (e.g., refusing to open mouth, screaming) increased at the dentist, and 56%
(n=209) of parents noted that their child’s sensory sensitivities (e.g., difficulty with bright
lights, loud noises, instruments for cleaning, taste of products) were heightened at the dentist
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as well. Parents also strongly agreed that these uncooperative behaviors and sensory
sensitivities made dental appointments challenging [77% (n=288) and 66% (n=246),
respectively]. Specific to the sensory stimuli in the dental office, children with DS were
reported to be afraid of, dislike, or complain about: dental instruments in their mouth (55%;
n=204), loud sounds (49%; n=181), bright lights (40%; n=150), leaning back in the dental
chair (31%; n=116), smells in the dental office (21%; n=77), and/or the taste of toothpaste or
fluoride (12%; n=43).

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Almost 60% (n=215) of parents reported that their child with DS had a regular dental clinic
for care; of those, 94% (n=202) reported that their child saw a specific dental provider in that
clinic. Additionally, 35% (n=131) of parents stated that their dentist was specialized in
working with children with DS or CSHCN. Approximately 50% (n=194) of parents reported
that their child had two or more dental cleanings in previous the 12 months, while 44%
(n=163) received only one. However, more than half (n=205) of parents reported that
finances limited the number of times they took their child to the dentist per year, with
parents with no insurance/paying out of pocket endorsing this challenge most frequently
(70%), followed by parents of children with state insurance (66%), and private insurance
(54%).

Despite the majority of children having a dental home, almost 80% (n=289) of parents also
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reported moderate-to-extreme difficulty locating a dentist willing to provide their child with
care; parents of children with state insurance reported this problem most frequently (93%),
compared to approximately 70% of parents with private insurance and those who paid out-
of-pocket. Sixty-one percent (n=227) of parents reported that their child had been refused
care by a dental provider. As reported by parents, reasons the dental practitioner provided for
refusing services included: inadequate financial compensation (60%; n=137), no hospital or
surgical privileges (52%; n=118), inadequate training to treat CSHCN (46%; n=104),
cleanings take too long (39%; n=87); child’s behavior problems (30%; n=67), and not
accepting the child’s health insurance (8%; n=19).

Discussion
Previous parental reports have been varied in their description of the oral health of their
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children with DS, with some reporting overall good oral health15,26,27 while others reporting
poor.28,29 In our study, over half of our parent respondents considered their child with DS’s
oral health as good. However, based on the number of reported cavities and teeth pulled due
to decay, many children with DS in our study exhibited a history of poor oral health. For
example, 95% of participants reported that their child had one or more cavities in their
primary dentition, substantially more than the 52% of children 6–11 years described in the
National Health and Nutrition Examination Survey (NHANES).30 Likewise, 94% of our
sample reported one or more cavities in their child with DS’ permanent dentition, compared
to only 21% in NHANES.30 Our increased report of cavities is especially of interest as
research has been inconsistent as to the prevalence of caries in this population, with some
results suggesting a decreased incidence of caries in individuals with DS.31,32 Half of our
sample self-identified as Hispanic or Latino which may explain some of the increased decay
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in our participants, as oral health care disparities including greater tooth decay have been
reported in children from minority groups.4,30

Our results also suggest that children with DS experience difficulties accessing professional
oral care. Challenges finding a dentist willing and equipped to treat children with special
health care needs is common.4,24,33–36 According to the 2006 National Survey of CSHCN,
children with DS reported the highest proportion of unmet dental care needs (17.4%),

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experiencing significantly greater challenges obtaining needed dental care as compared to

other CSHCNs.37 Interestingly, over half of our participants reported having a dental home
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for their child; however, in line with previous research, almost 80% of participants also
reported challenges finding that care.

The reluctance some dental professionals exhibit in treating children with special care needs
has partially been attributed to a lack of personal confidence in treating this population, due
to inadequate training and knowledge. Practitioner education is a commonly reported barrier
to dental care access for CSHCNs,4,9,38,39 so it is not surprising that almost 50% of parents
reported that practitioners cited inadequate training to treat children with special health care
needs when refusing care to their child with DS. This challenge also exists outside North
America, with over 70% of Belgium dentists reporting that they rarely treated children with
DS and that they desired additional training,40 and over 50% of respondent dentists in Brazil
stating that they only ‘partly’ understand the needs and limitations of patients with DS.18
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Contrary to the above studies, over 90% of 22 US and Canadian dental schools surveyed
reported including educational material specifically addressing DS, autism spectrum
disorder, mental impairments, and age-related disabilities.41

Financial concerns were another barrier reported by parents. More than half of our parent
respondents reported that finances limited the number of times they take their child with DS
to the dentist each year, despite having state or private insurance. Similarly, parents of
children with special health care needs, including DS, have previously reported that dental
care is too expensive, with 58% additionally stating that this cost ‘often or sometimes’
prevented them from taking the child to the dentist.35 Likewise, cost was the most common
reason parents reported when explaining why their child with a special healthcare need did
not receive needed preventive dental care.36,37
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Comparing our sample of children with DS to the 2013–2016 NHANES data for children 3–
15 years,42 parents reported similar toothbrushing frequency per day, with 61% of both
groups reporting brushing two times in a day. However, despite this high endorsement of
brushing frequency, our results also found that almost 50% of children did not brush their
teeth every day in a given week; NHANES did not ask this question. Compared to another
study which inquired about toothbrushing frequency per day and per week, our parent
respondents reported a lower frequency of toothbrushing for their children with DS (mean
11 times per week), compared to typically developing children (mean 12.6 times per week),
but more frequently than children with autism spectrum disorder (mean 10.5 times per
week).24 Interestingly, none of these clinical nor non-clinical groups reached the
recommended twice daily brushing.43 In addition to diminished toothbrushing frequency,
children with DS experience hypotonic motor function,44 which may lead to inadequate
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cleaning and thereby increase risk for poor oral health.

Behavioral challenges also have the potential to hinder oral care in the home19 and the
delivery of professional oral care for this population.18,19,26,35 Despite some literature
suggesting that oral-related behavior management is not problematic in people with DS,14,17
other studies have reported uncooperative behavior and the experience of stress during oral
care at the dentist for children with DS,18,19,26,35 both of which our findings support.

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Uncooperative behavior has the potential to lead to a number of oral care related
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consequences, including unmet oral health care needs, tooth loss, as well as the need for
advanced behavioral guidance techniques.19,26,45 Lastly, children with DS often have
numerous other health-related concerns; therefore, despite the increased risk for oral health
problems, oral care may not be regarded as a priority.6,33,35 In summary, due to the multiple
factors which may impede oral care for children with DS, it is important to develop
interventions to improve care in the home and dental office.

Several limitations should be noted. Respondents came from a convenience sample of

parents who completed an online survey and self-reported having a child with a DS
diagnosis; as such, no diagnostic confirmation took place nor is it possible to calculate
survey response rate. Additionally, although the “Dental Care in Children” survey has been
utilized previously to examine oral care experiences for other clinical populations,24,25,46,47
it is not a standardized tool; questions such as oral health history (e.g., caries, pulled teeth)
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required parent recall which may not be as accurate as dental records.

Conclusion
Based on this study’s results, the following conclusions can be made:

1. Over half of parents assert that their child with DS has good oral health, despite
simultaneously reporting a higher than average number of cavities and pulled
teeth due to decay in both primary and permanent dentition.

2. Parents of children with DS report challenges with home and professional oral
care as well as finding and accessing dental professionals willing and able to
treat their child.
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3. These findings support the need for increased education and practical training for
dentists in working with CSHCN, specifically DS, and for the development of
interventions to improve care for this population, both in the home and dental
office.

The authors declare that there are no conflicts of interest regarding the publication of this
paper. All authors have made substantive contribution to this study and/or manuscript, and
all have reviewed the final paper prior to its submission.

Acknowledgements
This work is based on research supported by the National Institute of Dental and Craniofacial Research (U01
DE024978; U01 DE024978-04S2). The first and second authors were also supported by, respectively, the National
Center for Medical Rehabilitation Research (NCMRR K12 HD055929) and the National Research Foundation of
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South Africa (Grant: 111611).

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Table 1.

Descriptive Characteristics of Survey Respondents

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Mean (SD)

Child Age 8.7 (2.04)

n (%)
(N=372)

Child Sex
Male 245 (65.9)
Female 127 (34.1)

Child Race*
White, Caucasian 290 (78.0)
Asian 13 (3.5)
Black or African American 50 (13.4)
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American Indian or Alaska Native 18 (4.8)

Native American or other Pacific Islander 12 (3.2)
Child Hispanic Status
Not Hispanic, not Latino 187 (50.3)
Hispanic, Latino 184 (49.5)
Communication (My child is able to indicate his/her needs or wants using:__________)
Single words or phrases 141 (37.9)
Sentences 122 (32.8)
Pointing to pictures 54 (14.5)
Gestures 29 (7.8)
Screaming and/or yelling 20 (5.4)
My child is unable to communicate 4 (1.1)
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Missing 2 (0.5)
Survey Respondent Relationship to Child
Mother 169 (45.4)
Father 202 (54.3)
Other Family Member 1 (0.3)
Maternal Education Level
Less than High School or GED 1 (0.3)
High School or GED 55 (14.8)
College 268 (72.0)
Graduate Degree or above 46 (12.4)
Missing 2 (0.5)
Paternal Education Level
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Less than High School or GED 1 (0.3)

High School or GED 31 (8.3)
College 247 (66.4)
Graduate Degree or above 91 (24.5)
Missing 2 (0.5)

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Child Dental Insurance Status

State Insurance 164 (44.1)
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Private Insurance 95 (25.5)

Parent pays out-of-pocket 64 (17.2)
None 28 (7.5)
Missing 21 (5.6)

*
Percentages do not sum to 100% as participants could choose more than one answer.
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Pediatr Dent. Author manuscript; available in PMC 2021 May 15.