Content uploaded by Malin Stensson
Author content
All content in this area was uploaded by Malin Stensson on Feb 27, 2022
Content may be subject to copyright.
Received: 8 October 2021 Accepted: 18 January 2022
DOI: 10.1111/eos.12859
ORIGINAL ARTICLE
Dental health care for children with Down syndrome: Parents’
description of their children’s needs in dental health care settings
Malin Stensson1,2Johanna Norderyd2,3Marcia Van Riper4Luc Marks5,6
Maria Björk2,7
1Centre of Oral Health, School of Health Sciences, Jönköping University, Jönköping, Sweden
2CHILD Research Group, SIDR, Jönköping University, Jönköping, Sweden
3National Oral Disability Centre for Rare Disorders, The Institute for Postgraduate Dental Education, Jönköping, Sweden
4School of Nursing, The University of North Carolina at Chapel Hill, North Carolina, USA
5Center for Dentistry and Oral hygiene, University Medical Centre, University of Groningen, Groningen, The Netherlands
6Dept. of Special Care in Dentistry, Oral Health Sciences, University of Gent, Gent, Belgium
7Department of Nursing Science, School of Health Sciences, Jönköping University, Jönköping, Sweden
Correspondence
Malin Stensson, Centre for Oral Health,
Department of Natural Science and
Biomedicine
School of Health Sciences, Jönköping Uni-
versity,Box 1026, Jönköping SE-551 11,
Sweden.
Email: malin.stensson@ju.se
Funding information
Futurum, The Academy for Health and Care
in Region Jönköping County,Sweden
Abstract
A visit to the dental clinic may be challenging for a child with Down syndrome due to
medical and oral health problems as well as communication problems. The aim of the
present study was to explore how parents of children with Down syndrome describe
their child’s needs in the dental health care setting. In a survey concerning parental
experiences with dental health care in Sweden, free comments were analysed with
content analysis and resulted in five categories: “Need for continuity of care in
dental health care”; “Need for dental health care professionals to have knowledge
and expertise in caring for children with Down syndrome and other disabilities”;
“Need for dental health care professionals to use a caring approach with children
with Down syndrome”; “Need for the child with Down syndrome to be prepared
to participate in their dental health care visit” and “Need for the child with Down
syndrome to be given the same rights as typically developing children”. To support
children with Down syndrome in an optimal way, dental health care needs to be
tailored to meet the child’s unique needs. In addition, dental health care professionals
need knowledge of and expertise in the care of children with Down syndrome.
KEYWORDS
children, children’s rights, dental health care, Down syndrome
INTRODUCTION
Children with Down syndrome have a higher prevalence of
dental and oral conditions as well as a higher risk of medical
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original
work is properly cited.
©2022 The Authors. European Journal of Oral Sciences published by John Wiley& Sons Ltd on behalf of Scandinavian Division of the International Association for Dental Research.
problems with oral health consequences, which suggests
that they need ongoing support from dental health care
professionals [1]. In addition, visual and hearing impairments
are common in children with Down syndrome, and together
Eur J Oral Sci. 2022;e12859. wileyonlinelibrary.com/journal/eos 1of8
https://doi.org/10.1111/eos.12859
2of8 STENSSON ET AL.
with intellectual disability these may impact communication
in dental health care [2,3]. Children with Down syndrome do
not constitute a homogeneous group; there is a considerable
variation in intellectual and physical functioning [4]. More-
over, in children with Down syndrome (as well as in children
with other intellectual disabilities) there are differences in
how the child is allowed to participate and be involved in
their own health care. Some individuals need more support
than others [4,5]. Attitudes to and lack of knowledge about
disability among health care professionals and a stereotyped
image of children with Down syndrome can influence the
implementation of needed health care and dental health
care [6,7].
According to the Swedish national medical guidelines for
children with Down syndrome, it is recommended to have
established contact with dental health care professionals from
around 1 year of age at the latest. The guidelines highlight
the value of cooperation between specialist and general
dental health care professionals [8]. Therefore, the child’s
place of residence can affect the possibility of accessing and
utilising dental health care. While families in some areas
have well-established access to dental health care specialists,
families in northern Sweden may have limited access [9].
Many parents of children with Down syndrome emphasise
the importance of a holistic approach from health care
professionals, along with coordination between health care
organisations [10]. There have been few studies focused on
parental perceptions of dental health care for children with
Down syndrome especially in Sweden. Most studies report
findings from countries with different health care systems.
Although studies show that parents often have a positive
perception of their children’s oral health [11–12], parents
and other individuals who provide support to young people
with disabilities have also reported that nobody takes the
overriding responsibility for the young person’s dental health
care [13]. In addition, they have pointed out that dental health
care professionals need to have knowledge and expertise
in providing care to children with intellectual disabilities
[14]. There is considerable variation in competence and
engagement of professionals in providing dental health care
for children with disabilities. Dental health care professionals
and dental students have reported that they are not always
comfortable in treating individuals with intellectual disabil-
ities, because they lack knowledge and experience [15–17].
Children with Down syndrome deserve the same quality of
health care as other children [18], and the same is true for
dental health care. Thus, it is important to further explore
Swedish parents’ perception of their children’s needs when
visiting the dental setting. Therefore, the aim of this study
was to describe how parents of children with Down syndrome
perceive their child’s needs within the dental health care
setting.
MATERIAL AND METHODS
This study is based on the qualitative findings from a study of
parental perceptions of oral health, general health and dental
health care for children with Down syndrome in Sweden.
Stensson and co-workers presented the quantitative findings
in 2020 [19]. Given that the material and methods for the main
study already have been described in detail by Stensson and
co-workers [19], only a brief overview will be provided here.
Parents of children with Down syndrome between 0 and
18 years of age were invited to the study through the Swedish
Downs Syndrome Society’s Facebook page and their website
(www.svenskadownforeningen.se) in the first 3 months of
2018. At that time, the Swedish Down Syndrome Society had
approximately 480 members. The study involved completing
a 50-item survey with both closed and open-ended questions
about parental perceptions of general health, oral health and
received dental health care in children with Down syndrome.
In the 50-item survey [19], the respondents could make free
comments. These comments were related to the dental health
care, skills and knowledge of dental health care professionals
and the encounter between the child and the professionals.
Data analysis
Parental responses to the open-ended questions in the ques-
tionnaire (92 free-text answers) were analysed with content
analysis utilising the three main phases outlined by Elo and
Kyngäs [20]. In the first phase, the preparation phase, two of
the authors (MB, MS) read the free-text answers several times
to obtain a sense of the content. When a sense of the con-
tent had been established, meaning units, that is, text related
to the aim of the study—were highlighted, extracted from the
questionnaire and pasted into a separate document. In the sec-
ond phase, the organisation phase, meaning units were sorted
under different preliminary generic categories using an induc-
tive approach. Subcategories were then identified based on
similarities and differences of content. To reduce the num-
ber of categories, data were grouped together by collapsing
subcategories that could be gathered under the same content.
There was a continuous movement back and forth between
categories and an ongoing discussion between the authors
until a consensus was reached. In the third phase, the report-
ing phase, the results from the analysis were grouped into five
categories.
Ethical considerations
Participants were informed that completion of the question-
naire was voluntary, and that data would be confidential.
CHILD WITH DOWN SYNDROME – DENTAL CARE 3of8
The parents consented to their participation in the research
study by answering the questions in the questionnaire. In
accordance with the World Medical Association Declaration
of Helsinki, ethical approval was obtained from the Regional
Ethics Committee for Human Research at Linköping
University, Sweden 2016/425-31.
RESULTS
In total, 101 parents participated in the study (91 mothers and
10 fathers). They were aged between 28 and 58 years (mean
age 42.8), and approximately 70% had a university/college
degree. Their children’s age ranged from 1 to 19 years (mean
age: 9.6 years); 53 (52%) were boys and 49 (48%) were
girls. Most of the children lived with both of their parents
in the more populated parts of Sweden, the middle and the
south. Approximately 50 (∼50%) of the children attended
elementary special schools; 35 (∼35%) attended elementary
schools, and 16 (∼16%) were below school age. The majority
of the parents used the Swedish language (94%), and 20%
used signs and/or pictures to support communication with
their child with Down syndrome.
Five categories of need were identified:
(i) Need for continuity of care in dental health care;
(ii) Need for dental health care professionals to have knowl-
edge and expertise in caring for children with Down syn-
drome and other disabilities;
(iii) Need for dental health care professionals to use a caring
approach with children with Down syndrome;
(iv) Need for the child with Down syndrome to be prepared
to participate in their dental health care visit; and
(v) Need for the child with Down syndrome to be given the
same rights as typically developing children.
Each category is described below:
Need for continuity of care in dental health care
Many parents stated that there was a lack of continuity of care
in the dental health care provided to their child with Down
syndrome. One parent stated: “Lack of continuity. My child
does not have a dedicated dentist and meets new dentists every
time when being at the dental health care clinic”. Parents
noted that even if their child with Down syndrome did not
usually have problems meeting new people, they may need
extra time to adjust to a new dental health care professional,
since meeting new staff might remind them of previous den-
tal health care visits that were stressful or frustrating. Visits
to dental health care professionals tended to go better if there
was continuity from one visit to the next. One parent wrote:
“He always visits the same dental hygienist and dentist, which
is superb. I also appreciate that he is allowed to visit them sev-
eral times a year. However, during the years, it has not always
been good”.
Need for dental health care professionals to
have knowledge and expertise in caring for
children with Down syndrome and other
disabilities
Parents indicated that many dental health care professionals
seemed to lack knowledge about, and experience in, providing
dental health care to children with intellectual disabilities in
general, but also dental health issues specific to children with
Down syndrome. Because of this, their child with Down syn-
drome did not always receive the care they needed. Additional
visits were sometimes necessary, or in some circumstances the
child had to switch to another dental health care professional.
Having to switch to another dental health care professional
often lead to a prolonged period of time before the child’s next
appointment. One parent wrote: “Our dentist terminates the
examination if my son is showing a troublesome behaviour.
Then she will not even try. We will change dentists as we have
visited her twice and at both times, we had to go home without
having the teeth examined as the dentist has not even tried.
She assumes that my son won’t make it!”. Some parents noted
that it seemed as if, prior to meeting with the child with Down
syndrome, the dental health professional had already decided
that the child would be unable to handle different kinds of
examination.
Many parents reported that the professionals lacked knowl-
edge of the unique communication needs of children with
intellectual disabilities, as well as how to use alternative ways
to enhance communication, such as signs and pictures as a
support. Parents thought that the visit would have been more
successful if the dental health care professionals had used pic-
tures and signs. One parent wrote: “It would have been so
helpful if they (the dental health care professionals) used and
communicated with help of pictures and signs in combination
with spoken language”.
Parents reported that when dental health care professionals
had difficulty understanding both the verbal and body lan-
guage of the child with Down syndrome, as well as the child’s
needs, it was important for someone who knew the child to
accompany them in order to interpret the child’s thoughts
and feelings, as well as to help the child to feel safe. One
parent wrote: “Most of them don’t understand that they have
to wait for my son, they have to give him time to think, time
to understand and time to process what he has heard to give
him time to prepare an answer. Many of them also think that
they understand what he means, but in reality, they have not
understood a thing. This implies that he always has to have
4of8 STENSSON ET AL.
someone with him that knows him, how he reacts and what he
means”.
Need for dental health care professionals to use
a caring approach with children with Down
syndrome
Parents stressed that it was important for dental health care
professionals to meet the child with Down syndrome in an
open and sensitive way. Parents offered many specific sugges-
tions for how dental health care professionals should approach
children with Down syndrome and remarked that it was
important for professionals to be calm, patient, humble and
without prestige, otherwise it could lead to difficulties. One
parent wrote: “Before, we went to a specialist dentist and it
did not go well because they were not willing to compromise
and were not flexible about how the visit should go—the pro-
fessionals decided how things would go. My daughter imme-
diately felt that she was not allowed to decide anything and
therefore she refused to sit in the chair. It became a fight about
EVERYTHING. However, the dentist we have now is open and
sensitive towards my daughter and now she is not at all recal-
citrant. It is like night and day! Very interesting!”. Another
parent wrote, “If she just feels a little bit that the professional
want to “govern” her, it makes her refuse. She wants to feel
that she is in charge and that she has control over the situa-
tion”.
Some parents stressed that it was important for dental
health care professionals to talk directly to the child and to
be clear and open with what they wanted the child to do
and what the child could expect. Parents indicated that there
was no use in forcing the child, instead the dental health
care professional needed to explain things to the child with
Down syndrome so that the child could agree to participate.
One parent, whose child had positive interactions with dental
health care professionals, wrote: “They give him a lot of time.
He can touch everything they have (and they have as you
know a great deal of stuff) before they ask him to sit down. It
did not work as good when his dentist was stressed last time
so I hope it will be better next time”.
Need for the child with Down syndrome to be
prepared to participate in their dental health
care visit
Some parents indicated that their children with Down syn-
drome were very determined in their view of how things
should be, which could be aggravating when visiting the den-
tal health care professional. One parent wrote that “He usu-
ally is very determined that they are not allowed to give him
an injection or look in his mouth. However, he does not get
upset, but just says that they are not allowed to do it and he
thinks that it should be that way”. Some parents suggested it
may be good to let children with Down syndrome have prac-
tice visits where the child is allowed to sit in the dental chair,
is asked to open their mouth and encouraged to allow the den-
tal health care professional to examine their teeth. One parent
related: “...and to practice going to the dentist as he rather
doesn’t want to open his mouth. Last time they could actually
count the teeth in the lower jaw!”.
Some of the parents reported that they had asked for prepa-
rational/practice visits, but this was not offered. Other parents
noted that they wanted to book a visit at the dental clinic with-
out the child before the child’s scheduled visit. They wanted
to come alone to discuss possible strategies with the dental
health care professionals, as well as to speak about the time
of day that possibly worked best for the child. It was a way of
preparing both themselves and the dental health care profes-
sionals and gave the parent an opportunity to prepare the child
before the visit.
Even when parents tried to prepare the child for a visit to the
dentist, it still could be difficult for the dental health care pro-
fessional to perform the examination or treatment. One parent
said: “As my son is afraid of the examination lamp in the ceil-
ing, it is hard for him to sit in the dental chair. The dentist
then must crawl down to him on the floor and do the examina-
tion there. As you understand, it is impossible to examine the
teeth in a good way and, if necessary, to pull out milk teeth
that don’t fall out by themselves”. Therefore, when these dif-
ficulties could not be solved otherwise, some children had to
receive dental treatment under general anaesthesia.
Need for the child with Down syndrome to be
given the same rights as typically developing
children
Some parents reported that they had interacted with dental
health care professionals who had difficulty viewing the child
with Down syndrome as a unique individual. Instead, the den-
tal health care professional seemed to assume that all children
with Down Syndrome were alike. Because of this, the dental
health care professional behaved differently with their child
with Down syndrome than they did when meeting typically
developing children. One parent wrote: “The problem always
lies in the hand of the other. My son has no problem meet-
ing people, but those that he meets often have a problem with
meeting him”.
Some parents questioned if their child with Down syn-
drome was treated in the same way as a child with typical
development would have been and they stressed the rights
of every child. Parents noted that some dentists did not seri-
ously consider the fact that tooth agenesis is more common
in children with Down syndrome, and this needs to be taken
CHILD WITH DOWN SYNDROME – DENTAL CARE 5of8
into consideration. Some also experienced situations that gave
them the view that the dentist did not think that aesthetics–
having nice-looking teeth–is as important for children with
Down syndrome as it is for typically developed children.
“I have an uncomfortable suspicion that they have a bias
like “she had Down Syndrome and then it is not that important
how she looks like in the mouth”, but I do not know this for
sure. I have capabilities and financial resources and will make
sure that my daughter receives correct cosmetic treatment in
the future, exactly like a typically developed teenager would
have demanded, but all parents don’t have that ability. Dental
health care for children should be equal, especially important
for children that will have limited financial resources to do
extended cosmetic dental treatments as adults”.
DISCUSSION
This paper reports the free-text answers from a survey about
how Swedish parents of children with Down syndrome per-
ceive their child’s needs within the dental health care setting.
Five categories of need were identified. The first was the need
for continuity of care in dental health care. The next two needs
were focused on health care professionals and dental health
care professionals in particular; they need to have knowledge
and expertise in caring for children with Down syndrome and
other disabilities and they need to use a caring approach. The
last two needs were focused on the child with Down syn-
drome. Children with Down syndrome need to be prepared
to participate in their dental health visit and they need to be
given the same rights as typically developing children.
Our findings indicate that parents of children with Down
syndrome express a lack of continuity in the dental health
care that their child with Down syndrome receives. Conse-
quently, the child needs extra time to adjust to new dental
health care professionals. Continuity of care is important for
all children, but it is especially important for children with
Down syndrome and other chronic conditions. Continuity of
care can be enhanced if there is care coordination. The latter is
the management of care provided by members of the health-
care team from a variety of settings [21]. Children with Down
syndrome are at greater risk of missed care coordination than
other children with chronic conditions [22,23].
In a recent scoping review of care coordination needs of
families of children with Down syndrome, Skelton and col-
leagues [24] identified three needs: communication, infor-
mation and utilisation of health resources. Additional needs
focused on individual, family and healthcare contextual fac-
tors. Individual and family factors included experience with
healthcare, individual functioning and family functioning.
Healthcare contextual factors included resources, technology
use and dental health care. Five of the 38 studies reviewed
focused exclusively on dental care [12, 25–28].
To facilitate involvement of children with Down syndrome
in their own dental health care and to make the environ-
ment more adaptive, professionals need experience and cer-
tain skills. Parents in the present study suggested that den-
tal health care professionals need additional expertise in car-
ing for someone with Down Syndrome, as well as knowl-
edge in communicating with someone who has communica-
tion difficulties. In the literature, there is growing evidence
that, when indicated, it is beneficial to use alternative aug-
mentative methods of communication during examination or
treatment procedures [29–30].
One way to facilitate the ability of dental and other health
care professionals’ communication with children with Down
syndrome is to develop a partnership with the child and his/her
parents or caregivers [31]. They are the people most likely to
know the child’s preferred mode of communication. More-
over, they are also likely to know what kind of strategies will
work best to get their child to cooperate in different situations.
Health care professionals who work in partnership with the
child and their parents or caregivers are more likely to feel
prepared to care for and to communicate with the child.
There seems growing evidence that many dental and other
health care professionals feel unprepared to care for and com-
municate with individuals with Down syndrome and other
disabilities, and, because of this, some may refer the child
to a specialist [4,17,22,32]. This is not surprising, given the
findings from a study of how health care professionals are
prepared to provide care to individuals with disabilities [32].
In that study, more than half (58%) of the responding deans
of medical schools and 50% of the deans of dental schools
reported that a curriculum for patients with disabilities was
not a high priority. While 58% of the former and 47% of
the latter reported their graduates were competent in treat-
ing patients with disabilities, most of the medical and dental
school seniors and graduates expressed their inadequacy in
caring for individuals with disabilities.
In a review of studies focused on acute care nurses’ expe-
riences with patients who had an intellectual disability [33],
three themes were identified: (1) nurses feel underprepared
when caring for individuals with intellectual disabilities;
(2) they experience challenges when communicating with
individuals with intellectual disabilities, and (3) they have
ambiguous expectations of paid and unpaid caregivers. These
findings provide support for our observation that dental and
other health care professionals need better preparation in how
to care for and communicate with people with intellectual dis-
abilities. Lewis and colleagues [33] recommended that such
preparation should be twofold and include considering the
complexities of communicating with individuals with intel-
lectual disabilities. Obtaining practical experience of doing
so in clinical and educational environments ensure the safety
and dignity of people with intellectual disabilities and the
health care professionals who care for them. They argue that,
6of8 STENSSON ET AL.
although communication with people with intellectual dis-
abilities can be very time-consuming, merely increasing the
amount of time allotted is not enough [33]. Instead, greater
attention needs to be paid to assessing the preferred mode
of communication with each such individual. For example,
instead of just trying to communicate verbally, it may be
more effective to use alternative methods of communica-
tion because some individuals may respond better to nonver-
bal modes of communication or verbal communication aug-
mented by symbols and pictures.
Our findings suggest that it is important for dental health
care professionals to meet the child with Down syndrome in
an open and a sensitive way. Dental examination and dental
treatment can be a challenge both for the child as the pro-
fessionals, and professionals’ adaptation to the child’s level
of understanding is important. The success of this adaption
highly depends on the dental health care professional’s ability
to meet and involve the child. Parents of children with Down
syndrome valued dental health care professionals who were
patient and had an ability to engage the child [19], as well as
those who were sympathetic, good communicators and well-
informed about Down syndrome [6]. Parents are more satis-
fied when they can effectively collaborate with the profession-
als, which, they argued, improved their child’s quality of life
[34]. The attitude of professionals can affect how care is pro-
vided, and a stereotyped image of children with Down syn-
drome may negatively influence the care they receive. A neg-
ative experience can increase the risk of frustration in the child
and the parents and may lead to uncooperating behaviour in
the child [35].
Parents of children with Down syndrome have expressed
a need for appropriate oral health information early in their
child’s life [36]. This was also true in the present study. In
addition, parents in this study wanted tools or strategies to
help prepare their child to participate in their dental health
care visit. For example, some parents wanted contact with
the dental health care professionals before the dental visit
to receive information about the visit as well as to provide
information about their child. In the process of preparing and
involving a child in their own care, parents’ support is impor-
tant and will affect the child’s ability to cope with the situation
[37]. Information provided by a parent to a child prior the
child’s visit can improve the child’s participation. Moreover,
if children receive adapted information and are allowed to par-
ticipate, they may also make competent decisions themselves
[30,38–40]. Utilising dental health care, both general and
specialised, can be described in terms of participation. In the
present study, parents expressed the need for their children’s
participation in their own dental health care. According to the
fPRC framework created by Imms and colleagues in 2017 [5],
participation has two dimensions: attendance/being there,
and involvement while being there. Children who experience
a high degree of participation report stronger autonomy
and higher wellbeing than those who do not experience
the same level of participation. In the fPRC framework,
participation is dependent on the child’s and care providers’
characteristics, the environment’s adaptability and how well
a positive context is co-constructed by the child and the
environment.
Children with Down syndrome may require adaptations
in the care process, such as communication support, in order
to be fully participative. The results from our study question
whether this is actually applied. Even if children with Down
syndrome may face barriers to receiving dental treatment,
they should be given support in order to provide them with
the same possibilities as children without disabilities.
One limitation of the present study is that the free-text
answers are not representative of all parents in the study.
Those who have added free-text answers are likely to be
the most motivated parents. Notwithstanding, the study
contributes to the general research landscape by provid-
ing some parents’ perspectives. However, future research
should investigate the children’s own views and specific
needs during dental visits. To conclude, many children with
Down syndrome need to visit dental health care services
regularly. When visiting dental health care services, they
need continuity, and they need to meet professionals who
have a caring approach and knowledge and experience of
children with Down syndrome. The children also need to
participate in their own dental health care visit, which calls
for preparation. These results may also be transferred to
other groups of children that need special support. However,
a child’s medical condition and intellectual disability may
constitute a barrier to accessing required and necessary
treatment. In order to provide the best dental health care, it is
therefore important to focus on each child’s individual needs
and to see them as active participants in their own care.
ACKNOWLEDGEMENTS
The authors are grateful to The Swedish National Down Syn-
drome Association for contribution to the recruitment and to
all parents for their participation in this study. This study was
supported by grants from Futurum, The Academy for Health
and Care in Region Jönköping County, Sweden.
CONFLICTS OF INTEREST
The authors have no conflicts of interest relevant to this arti-
cle.
AUTHOR CONTRIBUTIONS
Conceptualization: Malin Stensson, Luc Marks, Maria
Björk; Methodology: Maria Björk, Malin Stensson; Soft-
ware: Maria Björk, Malin Stensson; Formal analysis:Maria
Björk, Malin Stensson, Johanna Norderyd, Marcia Van Riper,
Luc Marks; Investigation: Maria Björk, Malin Stensson,
Johanna Norderyd, Marcia Van Riper, Luc Marks; Writing
CHILD WITH DOWN SYNDROME – DENTAL CARE 7of8
- original draft preparation: Maria Björk, Malin Stensson,
Johanna Norderyd, Marcia Van Riper, Luc Marks; Project
administration: Malin Stensson; Funding acquisition:
Malin Stensson.
ORCID
Malin Stensson https://orcid.org/0000-0002-5236-5533
Johanna Norderyd https://orcid.org/0000-0003-3123-
753X
Marcia Van Riper https://orcid.org/0000-0002-5908-9033
Luc Marks https://orcid.org/0000-0001-5098-6726
Maria Björk https://orcid.org/0000-0001-6419-2417
REFERENCES
1. Aldossary M. Down syndrome: a review for the dental profession-
als. J Med Dent Sci. 2017;167:61–6.
2. Nelson LP, Getzin A, Graham D, Zhou J, Wagle EM, et al. Unmet
dental needs and barriers to care for children with significant special
health care needs. Pediatr Dent. 2011;33:29–36.
3. Laws G, Bishop DV. Verbal déficits in Down’s syndrome and spe-
cific language impairment: a comparison. Int J Lang Commun Dis-
ord. 2004;39:423–51.
4. Lipsky M. Street-Level Bureaucracy. Dilemmas of the individual
in public services. NY: Russell Sage Foundation; 2010.
5. Imms C, Granlund M, Wilson PH, Steenbergen B, Rosenbaum PL,
Gordon AM. Participation, both a means and an end: a concep-
tual analysis of processes and outcomes in childhood disability. Dev
Med Child Neurol. 2017;59:16–25.
6. Kaye PL, Fiske J, Bower EJ, Newton JT, Fenlon M. Views and
experiences of parents and siblings of adults with Down Syndrome
regarding oral healthcare: a qualitative and quantitative study. Br
Dent J. 2005;198:571–84.
7. Pace JE, Shin M, Rasmussen SA. Understanding attitudes toward
people with Down syndrome. Am J Med Genet. A. 2010;152:2185–
92.
8. Annerén G, Wester Oxelgren U, Jahnke K, Myrelid Å. Downs syn-
drom medicinskt vårdprogram 0–18 år. [National medical guide-
lines for children with Down Syndrome 0–18 years] 2020 [cited
2021 nov 11] Available from: https://snpf.barnlakarforeningen.se/
vardprogram
9. Klingberg G, Andersson-Wenckert I, Grindefjord M, Lundin SA,
Ridell K, Georgios T, et al. Specialist paediatric dentistry in Sweden
2008- a 25-year perspective. Int J Paediatr Dent. 2010;20:313–21.
10. van den Driessen Mareeuw FA, Coppus AM, Delnoij DM, de Vries
E. Quality of health care according to people with Down syndrome,
their parents and support staff—a qualitative exploration. J Appl
Res Intellect Disabil. 2020; 33: 496–514.
11. Hennequin M, Allison PJ, Veyrune JL. Prevalence of oral health
problems in a group of individuals with Down syndrome in France.
Dev Med Child Neurol. 2000;42:691–8.
12. Descamps I, Marks L. Oral health in children with Down syndrome:
Parents’ views on dental care in Flanders (Belgium). Eur J Paediatr
Dent. 2015;16:163–8.
13. Klingberg G, Hallberg U. Oral health–not a priority issue AG
rounded Theory analysis of barriers for young patients with dis-
abilities to receive oral health care on the same premise as others.
Eur J Oral Sci. 2012;120:232–8.
14. Hallberg U, Klingberg G. Medical health care professionals’ assess-
ments of oral health needs in children with disabilities: a qualitative
study. Eur J Oral Sci. 2005;113:363–8.
15. Ahmad MS, Razak IA, Boromeo GL. Special Needs Dentistry: per-
ception, attitudes and educational experience of Malaysian dental
students. Eur J Dent Educ. 2015;19:44–52
16. Davis, MJ. Issues in access to oral health care for special care
patients. Dent Clin North Am. 2009;53:169–81.
17. Descamps I, Fernandez C, Van Cleynenbreugel D, Van Hoecke Y,
Marks L. Dental care in children with Down syndrome: a ques-
tionnaire for Belgian dentists. Med Oral Patol Oral Cir Bucal.
2019;24:e385–e91. https://doi.org/10.4317/medoral.22129.
18. UN. United Nations Convention on the Rights of the Child. Office
of the United Nations High Commissioner for Human Rights. 1989
[cited 2021 aug 28]. Available from: https://www.ohchr.org/en/
professionalinterest/pages/crc.aspx
19. Stensson M, Norderyd J, Van Riper M, Marks L, Björk M. Par-
ents’ perceptions of oral health, general health and dental health
care for children with Down syndrome in Sweden. Acta Odontol
Scand. 2021;79:248–55.
20. Elo S, Kyngäs H. The qualitative content analysis process. J Adv
Nurs. 2008;62:107–15.
21. McAllister JW, Presler E, Cooley WC. Practice-based care coordi-
nation: a medical home essential. Pediatrics. 2007;120:723–33.
22. Phelps RA, Pinter JD, Lollar DJ, Medlen J.G, Bethell CD. Health
care needs of children with Down syndrome and impact of health
system performance on children and their families. J Dev Behav
Pediatr. 2012; 33: 214–20.
23. Williams K, Wargowski D, Eickhoff J, Wald E. Disparities in
health supervision for children with Down syndrome. Clin Pediatr.
2017;56:1319–27.
24. Skelton B, Knafl K, Van Riper M, Fleming L, Swallow V. Care
coordination needs of families of children with down syndrome:
a scoping review to inform development of mhealth applica-
tions for families. Children. 2021;8:558. https://doi.org/10.3390/
children8070558.
25. Amitha MH, Aiswarya AB, Anshad M, Anu J, Kanwardeep S,
Preethi VC, Shetty S, et al. Special needs of special children -
parental view. Nitte University J Health Sci. 2015;5:38–44.
26. Nunes M, Dupas G. Independence of children with Down syn-
drome: the experiences of families. Rev. Latino-Am. Enfermagem.
2011;19:985–93.
27. Nqcobo C, Ralephenya T, Kolisa YM, Esan T, Yengopal V. Care-
givers’ perceptions of the oral-health-related quality of life of chil-
dren with special needs in Johannesburg, South Africa. Health SA
Gesondheid. 2019; 24:1056. https://doi.org/10.4102/hsag.v24i0.
1056
28. Rahim FSA, Mohamed AM, Nor MM, Saub R. Dental care access
among individuals with Down syndrome: a Malaysian scenario.
Acta Odontol Scand. 2014;72:999–1004.
29. Beukelman DR, Mirenda P. Augmentative and alternative commu-
nication: Supporting children and adults with complex communi-
cation needs. Baltimore: Paul H. Brookes; 1998.
30. Grewal N, Sethi T, Grewal S. Widening horizons through alterna-
tive and augmentative communication systems for managing chil-
dren with special health care needs in a pediatric dental setup. Spec
Care Dentist. 2005;35:114–9.
31. Mårtenson EK, Fägerskiöld AM. A review of children’s decision-
making competence in health care. J Clin Nurs. 2008;17:3131–41.
8of8 STENSSON ET AL.
32. Holder M, Waldman HB, Hood H. Preparing health profession-
als to provide care to individuals with disabilities. Int J Oral Sci.
2009:1:66–71.
33. Lewis P, Wilson NJ, Jaques H, O’Reilly K, Wiese MJ. A qualitative
study of nurses’ perspectives of caring for children with intellectual
disability and their families in a paediatric acute care setting. Child
Health Care. 2019;23:639–51.
34. Jansen SL, van der Putten AA, Vlaskamp C. Parents’ experiences
of collaborating with professionals in the support of their child
with profound intellectual and multiple disabilities: a multiple case
study. J Intellect Disabil. 2017; 21:53–67.
35. Oulton K, Sell D, Kerry S, Gibson F. Individualizing hospital care
for children and young people with learning disabilities: it’s the lit-
tle things that make the difference. J Pediatr Nurs. 2015;30:78–86.
36. Slack-Smith L, Ree M, Leonard H. Oral health and children with
an intellectual disability: a focus group study of parent issues and
perceptions. Disabil Oral Health. 2010;4:171–7.
37. Charles JM. Dental care in children with developmental disabili-
ties: attention deficit disorder, intellectual disabilities, and autism.
J Dent Child. 2010;77:84–91.
38. Lindberg S, von Post I, Eriksson K. The experiences of par-
ents of children with severe autism in connection with their
children’s anaesthetics, in the presence and absence of the perioper-
ative dialogue: a hermeneutic study. Scand J Caring Sci. 2012; 26:
627–34.
39. Kelly M, Jones S, Wilson V, Lewis P. How children’s rights are
constructed in family centred care: a review of the literature. J Child
Health Care. 2012;16:190–205.
40. Coyne, I, Amory A, Gibson F, Kiernan G. Information-sharing
between healthcare professionals, parents and children with cancer:
more than a matter of information exchange. Eur J Cancer Care.
2016;25:141–56.
How to cite this article: Stensson M, Norderyd J,
Van Riper M, Marks L, Björk M. Dental health care
for children with Down syndrome – parents’
description of their children’s needs in dental health
care settings. Eur J Oral Sci. 2022;e12859.
https://doi.org/10.1111/eos.12859
