A biopsychosocial approach to functioning, oral health and...
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A biopsychosocial approach to functioning, oral health and specialist dental health care in children with disabilities – Swedish and international perspectives Doctoral Thesis Johanna Norderyd Jönköping University School of Health and Welfare Dissertation Series No. 082 • 2017 Studies from the Swedish Institute for Disability Research No. 82
Transcript of A biopsychosocial approach to functioning, oral health and...
A biopsychosocial approach to functioning, oral health and specialist dental health care in children with disabilities – Swedish and international perspectives
Doctoral Thesis
Johanna Norderyd
Jönköping UniversitySchool of Health and WelfareDissertation Series No. 082 • 2017
Studies from the Swedish Institute for Disability Research No. 82
Doctoral Thesis in Disability research
A biopsychosocial approach to functioning, oral health and specialist dental health care in children with disabilities – Swedish and international perspectivesDissertation Series No. 082Studies from the Swedish Institute for Disability Research No. 82
© 2017 Johanna Norderyd
Published bySchool of Health and Welfare, Jönköping UniversityP.O. Box 1026SE-551 11 JönköpingTel. +46 36 10 10 00www.ju.se
Printed by Ineko AB 2017
ISSN 1654-3602ISSN 1650-1128ISBN 978-91-85835-81-2
It is more important to know what sort of person has a disease
than to know what sort of disease a person has.
Hippocrates, c. 460 B.C. – c. 370 B.C.
Abstract
Introduction: Maintaining good oral health may be more important for
children with disabilities than others, since problems with oral health may
increase the impact of a disability, or the medical condition may increase the
risk for poor oral health. In addition, the risk for oral health problems may be
influenced by the functioning of the child. Functioning can also affect the
child’s ability to cooperate in the dental setting, and how dental treatment is
performed. A medical diagnosis alone does not provide enough information
about a child’s functioning, nor oral health. Thus, there is a need for a holistic
perspective of oral health and dental health care in children with disabilities.
The International Classification of Functioning, Disability and Health -
Children and Youth (ICF-CY) enables a structured assessment of the
biopsychosocial consequences of a health condition.
Aim: The overall aim of this thesis was to investigate how biopsychosocial
factors relate to oral health and specialist dental health care in children with
disabilities in a Swedish, and an international context, with special focus on
the experience of dental treatment under general anaesthesia (DGA).
Material and methods: The research was conducted using a quantitative,
cross-sectional, comparative and descriptive design. An ICF-CY Checklist for
Oral Health was completed with data from a structured interview with children
0-16 years old, referred for specialist dental health care, and their
parents/carers. Additional information was retrieved from dental and medical
records. Three groups were included in data analyses: one large international
group of 218 children from Argentina, France, Ireland and Sweden; one large
Swedish group with 99 children with complex disabilities; and one
international group of children with disabilities and manifest dental caries
from Argentina, France and Sweden.
Results: The ICF-CY Checklist for Oral Health identified both common and
varying functional, social and environmental aspects relevant for oral health
and oral health care in children who had been referred to specialist dental
clinics in four countries. Swedish children with caries experience had been
referred to a paediatric dental specialist clinic at a significantly older age than
caries-free children. The medical diagnoses were not significantly related to
dental caries or child functioning in the large Swedish group with complex
disabilities and low caries prevalence, nor was there a significant relationship
between dental caries and child functioning. Collinearity between dental
caries and problems in the functioning factor ’Interpersonal interactions and
relationships’ was observed in the international group of children with
disabilities and manifest dental caries. DGA sessions with combined medical
and dental treatment were common in the large Swedish study group. Children
with experience of DGA had more severe problems in intellectual functions
than those without experience of DGA. Problems in interpersonal interactions
and relationships increased, while problems with mobility decreased, the
likelihood for children having had experience of DGA. On international group
level, dmft/DMFT was significantly higher in children with the experience of
DGA than in those without DGA experience, but looking at Argentina, France
and Sweden separately, this was not true for the Swedish children. There were
significant, international differences between the prevalence of dmft/DMFT,
DGA and environmental barriers.
Conclusion: The biopsychosocial perspective, operationalised by the ICF-CY,
contributes a holistic view on oral health and specialist dental health care in
children with disabilities. In addition to certain differences, children with
different health status from different countries share many functional and
environmental aspects, important for oral health and dental health care. Early
referral to a paediatric specialist dental clinic seemed favourable for oral
health. The medical diagnosis was not related to child functioning or dental
caries. Child functioning had a significant impact on DGA, and in children
with disabilities and manifest dental caries, child functioning also had a
correlation with caries. The dental caries burden was a stronger factor than
functioning for the experience of DGA, however, dental health organisation
and country context seemed to matter the most. Combining dental and medical
procedures during the same GA session is good use of resources for both the
individual and the society. To ensure children with complex disabilities to
have the possibility of achieving equivalent good oral health as other children,
DGA is one important factor.
Key words: children, disabilities, oral health, dental care, functioning, ICF,
dental general anaesthesia
Contents
Original articles .............................................................................................. 1
Definitions and abbreviations ......................................................................... 2
Preface ............................................................................................................ 3
Introduction .................................................................................................... 4
Background .................................................................................................... 6
Disability .................................................................................................... 6
Operational and theoretical framework ...................................................... 8
The child and the microsystem ................................................................. 13
The child and the mesosystem .................................................................. 15
Oral health care and the exosystem .......................................................... 17
Organisation of dental health care and the macrosystem ......................... 19
Rationale for the thesis ................................................................................. 22
Aim ............................................................................................................... 24
Specific aims ............................................................................................ 24
Hypotheses ............................................................................................... 24
Materials and methods.................................................................................. 25
Design....................................................................................................... 25
Setting....................................................................................................... 25
Study participants ..................................................................................... 26
Instruments ............................................................................................... 28
Data analysis ............................................................................................ 31
Ethical considerations............................................................................... 35
Results .......................................................................................................... 38
Large international multicentre study group (Article I) ........................... 39
Large Swedish study (Articles II and III) ................................................. 41
International dental caries study (Article IV) ........................................... 47
Discussion .................................................................................................... 53
Methodological considerations ................................................................ 53
Discussion of results................................................................................. 57
Comprehensive understanding ................................................................. 67
Conclusions .................................................................................................. 69
Overall conclusions .................................................................................. 69
Clinical Implications ................................................................................ 70
Future Research ........................................................................................ 71
Summary in Swedish/ Svensk sammanfattning ........................................... 74
Acknowledgements ...................................................................................... 77
References .................................................................................................... 79
Appendix ...................................................................................................... 97
1
Original articles
The thesis is based on the following articles, referred to by their Roman
numerals in the text. An overview of the studies can be found in appendix 1.
Article I
Faulks D, Norderyd J, Molina G, Macgiolla Phadraig C, Scagnet G,
Eschevins C, Hennequin M. Using the International Classification of
Functioning, Disability and Health (ICF) to describe children referred to
special care or paediatric dental services. PLoS One. 2013 Apr 16;8(4).
Article II
Norderyd J, Lillvist A, Klingberg G, Faulks D, Granlund M. Oral health,
medical diagnoses, and functioning profiles in children with disabilities
receiving paediatric specialist dental care - a study using the ICF-CY.
Disabil Rehabil. 2015;37(16):1431-8.
Article III
Norderyd J, Klingberg G, Faulks D, Granlund M. Specialised dental care for
children with complex disabilities focusing on child functioning and need for
general anaesthesia. Disability & Rehabilitation. 2016 Nov 22:1-8. [Epub
ahead of print]
Article IV
Norderyd J, Faulks D, Molina G, Granlund M, Klingberg G. What
determines dental caries treatment under general anaesthesia in children with
disabilities: number of cavities, child functioning or dental organisation?
Submitted.
The articles have been reprinted with the kind permission of the respective
journals.
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Definitions and abbreviations
AAC augmentative alternative communication,
supporting speech with, for example, pictures
ART atraumatic restorative treatment
ASA American Society of Anaesthesiologists
CRPD Convention on the rights for people with
disabilities
DGA dental treatment under general anaesthesia
dmft/DMFT decayed, missing and filled teeth; primary
dentition in lower-case and permanent dentition in
capital letters (dmft = 0-20, DMFT = 0-28)
GA general anaesthesia
ICF International Classification of Functioning,
Disability and Health
ICF-CY International Classification of Functioning,
Disability and Health: Children and Youth version
ID intellectual disability
PCA principle component analysis
SD standard deviation
SPSS Statistical Package of Social Sciences
UNCRC United Nations’ Convention on the Rights of the
Child
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Preface
Working as a specialist in paediatric dentistry at an oral disability centre for
rare disorders, regularly meeting people who want to find a common name for
the symptoms they have, I have learnt that a diagnosis is very important. For
the individual and family, it enables a prediction of the prognosis and an
understanding of the heredity of the condition and it also gives them the
opportunity to find others sharing the same condition1,2. For the dental
professional, it gives guidance as to what specific oral signs and symptoms to
expect and look for, as well as treatment choices, and prognosis3-7. Both the
individual and the professional also gain the possibility of consulting experts
with specialist knowledge and experience of the current diagnosis8.
At the same time, working for many years as a clinician providing dental
health care for children with disabilities and different medical diagnoses,
means that I also know that the medical diagnosis itself is a poor predictor for
the child’s oral health, how the individual child will act in the dental setting
and how the dental health care, prevention and treatment best will be planned
and performed9-12.
Moreover, to communicate why special efforts and resources are needed to
create the conditions necessary to obtain good oral health in children with
complex disabilities, new holistic measures are required. When the ICF was
launched in 2001, my hopes were high that this would be “it”, but it took
almost another decade before I became an interdisciplinary disability
researcher and my intentions to explore this biopsychosocial possibility
became real.
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Introduction
Good oral health is important for everyone. In fact, for children with
disabilities, oral disease prevention may be even more important, since for
some, problems with oral health may increase the impact of disability, and for
others, the medical condition may increase the risk of poor oral health3,7,13,14.
In addition, the risk of oral health problems may be influenced by the child’s
level of intellectual capacity, and the child’s ability to cooperate with dental
care professionals may also influence how dental treatment is
performed12,15,16.
Preventing oral disease and maintaining good oral health in children is the
primary goal for a paediatric specialist dental team, and then giving treatment
at the right level for the child when necessary17. All children should have the
right to good oral health and adequate dental health care on as equal basis as
possible, but there is insufficient knowledge regarding how dental health care,
both at the clinical and the organisational levels, is provided for children with
disabilities18-20. Children with disabilities are vulnerable and in addition to
health inequalities they are also at higher risk of child maltreatment, such as
physical violence and neglect21-24. Dental neglect is the failure to care for the
basic oral health needs in a child which can result in preventable oral diseases
such as dental caries, gingivitis and periodontitis25-27. Due to physical
recalcitrance, which may be involuntary or linked to avoidance, oral hygiene
measures can be difficult in some children with severe disabilities. The people
responsible for the child’s oral hygiene may need more information and
practical support from the dental professionals15,28,29. Difficulties in oral
hygiene and treatment measures may lead care providers to implement
measures to handle these difficulties, such as using restraints or anaesthesia.
Jones et al (2012) defines the “binding of hands as a restraint” as a form of
physical violence. Use of physical restraints in dental treatment is common in
some countries, while in others, physical restraints are not accepted and
instead dental treatment under general anaesthesia (DGA) is often preferred.
The oral health of all children differs by country worldwide30. Children’s oral
health is likely to be related to factors both within the children themselves
such as the child’s functioning in the dental environment, as well as to
different environmental factors around the child. These factors interact with
each other and influence not only the child’s oral health but also how dental
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health care is provided. Some studies have highlighted the fact that there are
great variations in functioning between individuals sharing the same
diagnosis, e.g., a child with Down syndrome may or may not have behavioural
difficulties and varied levels of difficulties in learning31-34. In a study by Lollar
et al, two thirds of children with special health care needs were reported to
have more than one health condition and almost a third were reported as
having four or more functional difficulties31. Thus, functioning may have a
stronger impact than medical diagnosis. In dental research, most projects
concern oral health status with specific medical diagnoses10 as if children with
the same diagnosis behave in a similar way in the dental health care context.
Publications about a child’s functioning in daily life situations in relation to
oral health or dental health care scenarios are scarce15,16,35. Thus, in addition
to children’s medical diagnoses, this doctoral thesis focuses on their
functioning in an oral health context, and how this affects the actual care
provided. It also aims to analyse oral health and specialist dental health care,
especially DGA, for children with disabilities from Argentina, France, Ireland
and Sweden. A biopsychosocial approach is applied, using the International
Classification of Functioning, Disability and Health - children and youth (ICF-
CY) as the conceptual and operational framework36. Although it is assumed
that the child perspective is taken into consideration in the clinics involved in
the studies, this thesis and included articles mainly present the perspective of
the dental professional. The thesis is organised in levels, from the child to
society.
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Background
Disability
Disability is a concept that is difficult to define and measure and there are
several perspectives that can be addressed, but there is no universal consensus
on the definition. The World Health Organisation (WHO) states that disability
is an umbrella term that includes impairments, activity limitations and
participation restrictions37. Disability occurs in the interaction between an
individual with a health condition and personal and environmental factors.
The United Nations’ (UN) Convention on the Rights of Persons with
Disabilities (CRPD) includes people with long-term health impairments
which in the interaction with barriers may prevent participation in society on
an equal basis with others38. Here three main disability models will be shortly
presented: the medical, the social and the biopsychosocial, the latter
representing the perspective of this thesis.
Medical model of disability
Historically the medical model has dominated, with disability being referred
to as something concerning the individual’s health status, the result of an
injury or illness to the person’s body39-41. With this perspective, the
responsibility is to rehabilitate, cure and restore the body. The medical model
does not include social and other environmental factors that may prevent the
individual’s participation in society. In many ways, the medical model is still
a leading concept in medical and dental research.
Social model of disability
The social model developed after 1960 as a reaction to the medical model and
introduced the definition of disability with a shift from the individual to the
barriers within society, i.e., disability as a social phenomenon39. Impairment
is within the body and an issue for the individual, while disability is caused
by the environment and is an issue and responsibility for society. The social
model presents a political and ideological perspective42,43.
Biopsychosocial model of disability
Both the medical and social disability models are, in their different ways
reductive, and each alone does not grasp the flexibility and complexity needed
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to address the aims and underlying theory of this thesis. The biopsychosocial model - from now on, the named framework as outlined in the International Classification of Functioning, Disability and Health (ICF) launched by World Health Organisation (WHO) in 2001, aims to merge the medical and social perspectives on disability by applying a multi-dimensional, relational and interactive approach, and is the current framework of disability used44. Human functioning is described at three levels: body, activity, and participation, as pictured in Figure 144. The term disability comprises impairment as well as limitations and restrictions in activities and participation, while aetiology is only partly accounted for. Problems with functioning are not aetiology-dependent. Interacting within these parameters, the biopsychosocial framework, as manifested in the ICF and the child and youth version ICF-CY, also incorporates environmental and personal factors36,44. As such, the ICF framework illustrates the consequences of a health condition; it describes life as it is lived45. The arrows are bidirectional and represent the mutual interaction between the different dimensions. The biopsychosocial framework of disability is operationalised in the ICF and ICF-CY classifications.
Figure 1. The International Classification of Disability, Functioning and Health (ICF) 44, the biopsychosocial framework of the thesis.
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When applying the biopsychosocial perspective, it becomes obvious that
disability is not something that is or is not present; rather, it is something that
has a variable impact on an individual’s life in different situations and
different contexts46,47. It also becomes obvious that all of us will experience
disability in our lives. Although the ICF framework has been criticised for
taking the medical model too much into account, the CRPD also recognises
disability as an impairment on an individual level, interacting with barriers in
the environment which hinder participation in society38,48,49. In all, the ICF
framework can be seen as an example of a framework closely related to the
Ecological Systems Theory brought forward by Urie Bronfenbrenner in
197950. The ecological systems in the theory are organised from the
microsystem (including the child) through to the mesosystem (interactions
with the child – oral health care), the exosystem (oral health clinic) and the
macrosystems (national laws and regulations). The Ecological Systems
Theory is further described in the theoretical framework section.
Operational and theoretical framework
Disability research
Disability research is by definition interdisciplinary and includes the physical,
behavioural and social aspects51. Moving away from the reductive medical
perspective and applying the WHO’s broad definition of health and oral health
makes interdisciplinary research the natural approach when studying oral
health and dental health care in children with disabilities52. The
interdisciplinary dimension approach is represented by the biopsychosocial
model of the ICF, which enables a multidimensional description of an
individual’s relationship to oral health and oral health care44.
International Classification of Functioning, Disability and Health
- Children and Youth version (ICF-CY)
The ICF represents the biopsychosocial framework of disability; however, it
is not merely a framework. Based on the conceptual framework of the ICF, a
systematic classification with given values quantifying the biopsychosocial
impact on an individual also has been developed44. In 2007, the original ICF
classification was supplemented with categories specific for children and
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youth, which were needed to record characteristics in a developing child, and
resulted in the ICF-CY classification used in this study36. Today, however,
there is an ongoing process of merging the ICF and ICF-CY classifications53.
The classification structure differs from the framework as it lacks a component
for personal factors and the two framework components Activities and
Participation, are joined into one single component. Thus, personal factors
cannot be classified and activities and participation are classified as one entity.
The ICF-CY as classification is alphanumeric and the letters b, s, d, and e
correspond to the components and the numbers correspond to the chapters and
the following 2nd, 3rd and 4th levels of specification. An overview of the ICF-
CY classification is shown in Figure 2. The classification is organised in two
parts that are divided into components, which in turn are divided into chapters
that are divided into categories (items). The ICF-CY consists of 1,685 items.
Each category has a code, starting with a letter representing the component,
followed by figures representing the level of specification. The further ‘down’
the hierarchical levels you go, the more specific the categories become, as in
this example from the Body Structures component: 1st level, chapter 3
“Structures involved in voice and speech”, 2nd level, category s320 “Structure
of mouth”, 3rd level, category s3200 “Teeth”, 4th level, category s32000
“Primary dentition”. With the addition of ICF qualifiers, the degree of
difficulty experienced by an individual in each category can be quantified. The
quantifiers are described in the material and methods section of this thesis.
10
Figure 2. Schematic structure and terminology of the ICF-CY classification44.
The ICF-CY has standardised and defined concepts that enables the aetiology,
using a common language. In order to facilitate the use of the ICF, the WHO have produced an ICF checklist with the most clinically relevant ICF categories54. The ICF and ICF-CY are vast and the ICF checklist make it
The ICF and ICF-CY are universal classifications suitable for international research, since one of the main intentions in creating the ICF and ICF-CY classifications was to build a common language for communication regarding health and health care between countries globally55.
The ICF-CY is compatible with the International Statistical Classification of Diseases and Related Health Problems (ICD-10) and the Application of the International Classification of Diseases to Dentistry and Stomatology (ICD-DA), used for classifying diagnoses36,44,56-58. The ICF-CY and ICD-10 complement each other. When the focus is on child functioning, oral health and oral health care, ICF-CY is the obvious conceptual framework and instrument. Neither the ICF nor ICF-CY have been frequently applied in
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dental research. In 2005, Maeda and his co-workers presented a study using
the ICF to identify the factors important for dental treatment tolerance, and
this was, to my knowledge, the first dental ICF study ever published59. In
2006, Faulks and Hennequin published an article discussing the ICF in
relation to defining people with disabilities in a dental context and in 2011,
Petrovic and his co-workers published their ICF assessment of persons with
intellectual disabilities and dental treatment16,60.
In other fields than odontology, ICF and ICF-CY core sets have been produced
and published61. Core sets are short lists of ICF or ICF-CY items identified
through a structured defined scientific process, relevant for a specific health
condition or health situation62-64. ICF-CY core sets for oral health do not yet
exist, but would be a valuable instrument for both clinical and research
purposes. In addition to the fact that there is insufficient knowledge about
children with disabilities in relation to oral health and dental treatment in
general, there is also a need to find alternative and holistic approaches that
may be useful to present and analyse in the context of children. One example
would be functioning profiles for children with disabilities that can be related
to issues such as dental health problems, dental health care and DGA.
Furthermore, studies making international comparisons between different oral
health care organisations are lacking. Studies highlighting the importance of
services and the impact that an organisation can have on an individual child
with disabilities may add useful knowledge to and provide arguments for
certain strategies at different levels, for example when applying for resources
for a dental clinic, when planning dental health education, and in gaining
perspective on the rights of the child.
However, the ICF model framework, although useful in identifying and
describing factors important for functioning, disability and health, does not
explain how the different component dimensions interact with each other, or
their hierarchical relationship. Therefore, the Ecological Systems Theory has
been chosen as the underlying theory for discussing oral health, dental health
care and child functioning in this thesis while the ICF serves as a
complementary conceptual framework.
Ecological Systems Theory
In Bronfenbrenner’s Ecological Systems Theory, a child’s development is
described as being supported and influenced by a series of different contextual
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systems (Figure 3)50. There are five such subsystems that interact with each
other: the micro-, meso-, exo-, macro and chronosystem. The individual and
the family is in the centre, called the microsystem; the oral health organisation
is in the exosystem; and national legislation and regulations (the country
context) belong to the macrosystem. The mesosystem is the context where the
child meets the oral health care system, where the direct interaction between
child and oral health care provider occurs. As such, the mesosystem is created
by characteristics in the child, the family, the health care professional and the
oral health care organisation, and is a subjective reality from the perspectives
of both the child and the oral health professional. Time is not defined in the
ICF-CY framework, while it is accounted for in the Ecological Systems
Theory by the chronosystem. Although time is potentially important when
defining disability and oral health, it is not a parameter assessed in the present
study. Interactions go both outwards as well as inwards between the different
systems in the systems model, with bidirectional influences.
Both the Systems Theory and the ICF framework represent non-linear models,
where sub-systems (Systems Theory) or components (ICF) interact with each
other within a context, sharing the idea that functioning and disability are not
static over time or place65. There are some dental publications that include
Bronfenbrenner’s theory, but the Ecological Systems Theory is not widely
used to support dental research66-68.
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Figure 3. Visual model of Bronfenbrenner’s Ecological Systems Theory50.
The child and the microsystem
A child with disabilities, together with the parents, forms one of the
microsystems in the Ecological Systems Theory50. In the microsystem, the
child interacts with the immediate environment. Thus, microsystems have a
strong impact on child functioning and vice versa. According to the UN
Convention on the Rights of the Child (UNCRC)20, everyone younger than 18
years is a child, while child dental health care can either have a lower upper
age limit than this or include individuals that are older. However, as the
previous reasoning about the definition of disabilities illustrates, “children
Microsystem
Mesosystem
Exosystem
Macrosystem
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with disabilities” is not a well-defined concept. Children with disabilities tend
to be dependent on their parents for longer than children without disabilities
and it is not possible to draw a sharp line at 18 years old as the beginning of
adulthood for everyone. Disability depends on influences from several factors
and is not a static state. In this text, “children with disabilities” is defined as
children with at least one major health condition (the medical perspective),
that influence the child’s activities and participation in daily life (the
functional perspective), e.g. severe intellectual disability, severe motor
limitations and severe behavioural difficulties. The term “children with
complex disabilities” is used with an equivalent meaning for all. Logically,
the prevalence of children with disabilities varies according to the disability
definition used and exact figures are not available69,70. UNICEF estimates that
there are at least 93 million children with disabilities in the world, while the
WHO presents a figure of almost 2 billion71,72. In Sweden, the paediatric
habilitation service include children with complex disabilities, amounting to
at least 1% of the child population73. These habilitation services are not aimed
at specific diagnoses but in relation to function.
Oral health
Oral health is presented in relation to two different ecological systems; first,
in the microsystem, as part of the child and family, and later in the
mesosystem, in relation to children with disabilities and dental health care.
Oral health, however, both influences and is influenced by factors belonging
to all the other systems in the Ecological Systems Theory.
The WHO describes health as not only the absence of disease, but also as
including full physical, mental and social well-being52. The WHO also states
that oral health is an essential part of a person’s general health and his or her
quality of life74. In the dental literature, the term oral health is often applied to
describe the presence or absence of dental caries, gingivitis, and
periodontitis75,76. It is also this type of oral health data that traditionally is
collected and reported to authorities in order to follow the oral health situation
in populations77,78. Even from a strict biomedical perspective, this is not
correct, since there are more structures than teeth and gums in and around the
oral cavity that can be involved in pathological processes or malformations79-
81.
15
Oral diseases are common and almost everyone will be affected during their
lives82 and will experience the impact they can have on well-being and on
daily activities such as eating, drinking, and talking. The WHO reports that
60-90% of all school children have dental caries, making it one of the most
common non-contagious diseases in the world74. Untreated oral health
problems may lead to major impairments such as pain, infection, decreased
chewing and swallowing ability, speech difficulties, altered appearance, and
social stigma83-86; in addition, there is the potential presence of dental anxiety
increasing the disease load on an individual87. Nevertheless, many of the oral
pathological processes can go on without symptoms for a long time, without
a subjective experience of disease, and may not be discovered until the dental
professional assesses the patient at a routine dental check-up. Only then will
they be regarded as having impaired oral health88.
If using dental caries as a marker, oral health in Swedish children and
adolescents is comparably good globally82, and the number of decayed,
missing or filled permanent teeth in 12-year-olds is considered by the WHO
to be very low77. The corresponding ratings for the other countries represented
in this thesis – Argentina, France and Ireland – are moderate, low and low,
respectively.
The child and the mesosystem
The mesosystem is where the child and parents interact with health care
professionals. In these interactive processes, child functioning can have a
major influence and consequent impact on dental health care, including
treatment modality, but also possibly on oral health more generally.
Child functioning is partly defined by the child’s individual characteristics and
partly by how these characteristics fit in with the surrounding living
environment89. Child functioning can be defined on different levels;
functioning thought to be relevant for oral health at the body level and at the
level of activities and participation in everyday life situations is discussed in
this thesis36.
When assessing child functioning relevant to dental health care, Petrovic and
his co-workers found higher degree of limitations in intellectual function and
communication restriction in children in need of DGA when using the
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classification of ICF16. Otherwise, previous publications concerning the
different aspects of child functioning in life situations in relation to oral health
parameters mainly consider dental anxiety90,91. Some other publications look
at the issue in conjunction with specific oral health problems, such as
temporomandibular disorders90-92. Studies involving biopsychosocial factors
related to oral health issues in children, such as behaviour, socioeconomy and
dental caries are common93,94, although they are not based in the ICF or ICF-
CY. However, few studies explicitly link influences in different ecological
systems.
Oral health in children with disabilities
For many children with disabilities it can be difficult to communicate the
symptoms of oral health problems. To compound this, it may also be difficult
for dental professionals to perform the thorough examination, including intra-
oral radiographs, needed to detect both the symptomatic and non-symptomatic
signs of oral disease95,96. These are factors that may make the burden of oral
diseases heavier in children with disabilities, especially for children living in
societies that do not provide sufficient support. Poor oral health may increase
the impact of a disability on a child’s life and can also pose a threat to general
health97,98.
It is known that some specific diagnoses increase the risk of oral health
problems, e.g. Down syndrome and periodontal disease, cerebral palsy and
tooth wear, 22q11.2 deletion syndrome and low salivary secretion6,79,99. On an
individual level, however, the diagnosis itself gives no information about the
person’s oral health. Separate statistics on the oral health of children with
disabilities as a group are insufficient. It could be assumed that children with
disabilities run a greater risk of having poor oral health and that they need
more preventive care in order to have the same possibility of good oral health
as children without disabilities100. Also, maintaining good oral health means
less time spent in the treatment of dental disease that could have been
prevented; time that the child could have spent in other activities. Families
with children with complex disabilities spend a lot of time adapting to the
child’s different health needs and children with complex disabilities take part
in fewer family activities than children with typical development101,102. In a
review in 2015, it was stated that in Swedish dental research about children
with disabilities, knowledge about oral health intervention outcomes was
lacking103. In France, Hennequin and her co-workers published the results of
17
a survey concerning children in special schools, revealing inequalities in oral
health104. In 2010, Bissar et al presented results showing that oral health status
was poorer in young athletes aged 12-17 competing in the Special Olympics
in Germany than in the general population105.
Hallberg and Klingberg have performed a series of important qualitative
research studies presenting the perspectives of the individuals, the parents and
dental and medical professionals on the oral health of individuals with
disabilities in Sweden11,106-109. People with disabilities thought oral health and
dental health care was important, but gave it a low priority108. Parents of
children with disabilities expressed the importance of balance between the
vulnerable family and the support from others11. Medical health care
professionals saw oral health as the responsibility of parents and dentists,
while dental health care professionals’ competence and commitment
concerning oral health care for children with disabilities varied greatly106,107.
Several studies point to the fact that children with disabilities face more
barriers in receiving adequate dental health care106-112. When a child with
complex disabilities has manifest dental caries, the child’s characteristics will
probably impact the choice of treatment modality more than the technicalities
of the caries treatment113. The choice of how to provide the best treatment
available for children with disabilities may to a certain extent depend on how
the dental health care system is organised.
Oral health care and the exosystem
The organisation of dental health care on a clinical level (e.g. dentists, dental
hygienists, dental clinic) belongs in the exosystem50. There are major
variations in how oral health care for children with disabilities is provided in
general. In the Netherlands, de Jongh and his co-workers performed a study
identifying oral health status, dental treatment needs and barriers to care for
children with intellectual disabilities114. They found a high degree of untreated
dental caries and a low degree of qualitative dental health care, especially for
children from ethnic minority groups. In a Brazilian cohort of children with
intellectual disabilities, Oliveira and her co-workers also found higher dental
treatment need and unsatisfactory access to dental health care115. Hallberg and
Klingberg (2004) identified differences in dental professionals’ competencies
18
and attitudes to dental health care for children with disabilities on an
individual level, as well as organisational differences. While most dentistry
for children with typical development is performed by general dentists,
dentistry for children with disabilities often demands special competence,
acquired by experience and education.
Paediatric specialist dentistry
The paediatric dentistry specialty is interdisciplinary, and the specialist
paediatric dentist adapts comprehensive dental health care to the individual
child. The growing individual’s psychological, physical and emotional
development must be considered, and to ensure that children with both
complex and complicated treatment needs receive adequate dental health care,
this is a prerequisite. Paediatric dentistry is, however, not a recognised
specialty in all countries of the world. In Europe, it is recognised by thirteen
countries. Sweden is one of them, but not France or Ireland116. Paediatric
dentistry is also a recognised specialty in Argentina.
In 2010, Klingberg and her co-workers presented the results of a survey
regarding Swedish clinics for paediatric dentistry. Almost a fifth of the
referrals concerned children with medical conditions and/or disabilities, and
every fourth child received all their dental treatment at a paediatric specialist
dental clinic17.
Dental treatment under general anaesthesia (DGA)
DGA makes dental treatment possible for children who, for various reasons,
cannot cooperate with regular chair-side treatment. In combination with the
need for a dental intervention, such as examination, scaling or dental caries
treatment, common indications for performing the treatment under general
anaesthesia (GA) may be dental anxiety, children of a very young age or
disability, but it could also be used for extensive and complicated dental
treatment needs117-120. Attitudes towards DGA differ between individuals and
countries121,122. In this thesis, DGA is considered an important asset in
dentistry, enabling qualitative dental health care for children with disabilities.
When regular behavioural management techniques are insufficient, sedation
and GA are chosen in the best interests of the child in both medical and dental
health care. Physical restraints are not used in Sweden, as they are considered
to be in conflict with the principles of the UN Convention on the Rights of the
Child and not culturally acceptable20.
19
In the previously cited publication by Klingberg et al, approximately 10% of
all patients referred to Swedish paediatric dentistry specialist clinics received
some dental treatment under GA, 11% under N2O/O2 inhalation sedation and
11% with oral, rectal or nasal benzodiazepine sedation17. There is no
equivalent data available describing the situation in the other countries in this
study. The Swedish survey does not present the main reasons for DGA, what
dental treatment was performed or if the DGA sessions were combined with
medical or other treatment. These are important factors when planning and
organising dental health care for children with disabilities. The Swedish
context in this thesis represents a region with good access to paediatric dental
specialists and where there is a long tradition of collaboration with medical
specialists, including anaesthetists. This differs between regions within the
country, as it does internationally between countries. In Ireland, Prabhu and
her co-workers aimed to develop an assessment tool to identify the patients
suitable for dental treatment under sedation or GA113. Another study by
Prabhu et al presented parents’ views on dental treatment for children with
disabilities and, although they expressed high satisfaction, the parents wished
for more and closer clinics with facilities for sedation and GA123. Petrovic and
his co-workers found insufficient transportation services to be an
environmental predictor for DGA in children with disabilities16.
Organisation of dental health care and the macrosystem
The WHO states that people with a disability have the same general health
care needs as everyone else and the need for the same access to care. On the
other hand, the UN Convention on the Rights for People with Disabilities
(CRPD) claims access to the highest standard of health care37,38. This should
be applicable to oral health as well74. However, the organisation of dental
health care is dependent on the current legislation and regulation, so
availability, and the accessibility of dental health care for children with
disabilities differs between countries and within countries17,110,124-126. National
legislation and regulating insurance systems form the macrosystem in the
Ecological Systems Theory50. Since external conditions denote the limits for
the individual concerning matters such as the availability for prevention, the
accessibility to GA and the affordability of dental health care, there is a value
20
in studying the differences between countries and different oral health
organisations. This is also important from a children’s rights perspective. The
countries involved in the thesis have all ratified the UN Convention on the
Rights of the Child and they are presented here in alphabetical order.
Argentina
In Argentina services for children with disabilities are scarce and the
availability of facilities to provide care under sedation and GA are even rarer.
Sedation with benzodiazepine or N2O/O2 is only performed by
anaesthesiologists. Although the interest in caring for children with
disabilities is increasing, there are many barriers, of which the lack of
economic recognition is a major one. It is stated by law that all dental
treatment, for all children, should be covered by a National Health Fund
through public or private health insurance companies127. Often, however, the
mechanisms involved in obtaining these benefits remain unknown to the
patient and there is a huge threshold of bureaucratic negotiation to overcome.
In Argentina, there are no dental hygienists.
France
In France, dentistry for children is provided up to the age of 16 years. Dental
health services for children with disabilities who are unable to cooperate in a
general dental setting are generally only provided at teaching hospitals. This
availability is limited and waiting lists for dental treatment are long. There are
no dental hygienists and no function for dental nurses as dental health
educators, nor is there an automatic recall for dental examinations. Attendance
is based on the need expressed by the child or his/her carers. Restorative
treatment and extractions in a conventional dental chair setting are reimbursed
by the social security system at 70% of a tariff fixed by the national social
security system. Nitrous oxide inhalation sedation is not reimbursed, however,
for GA and benzodiazepine sedation, inpatient and daycare is free on delivery
in the few places where this is offered. In many centres, GA is available for
dental extractions only. Paediatric dentistry is a recognised university
discipline but not a clinical specialty, whilst dentistry for patients with severe
pathologies is a recognised clinical specialty, but not an academic
discipline116,128.
21
Ireland
All children receive dental care from the Public Dental Service (PDS)129.
Generally, children are assessed two or three times during childhood and basic
dental treatment is provided up to the age of 14 years130. Children with
disabilities or medical indications are generally seen once a year by the PDS,
and dental treatment is provided from school age. There is no pre-school
service. However, since the PDS operates with local operational
independence, patient selection, management and follow-up varies, and
services to children with disabilities are different in different geographical
areas. Ireland has dental hygienists and oral health educators116.
Sweden
Oral health care for children with disabilities in Sweden does not differ from
oral health care for any child. Since January 1 2017, everyone, aged up to 21
years receives all of their dental health care free of charge; previously, the age
limit was 19 years18. This includes specialist treatment and DGA. All children
from the age of three years and up are called to a dental clinic on a regular
basis. In some areas, this is done earlier, such as in the region chosen as one
of the contexts in this thesis, where the first dental visit is offered when the
child is one year of age. After a risk assessment, measures for prevention are
planned for the individual child. This comprises information,
recommendations and instructions regarding oral hygiene, eating habits and
fluorides, given at recall visits, usually by a dental hygienist or dental nurse.
Children are examined by a dentist at intervals predetermined by the region
and, for some, there are additional, individually decided visits, normally based
on the perceived risk for oral disease and at some orthodontic key-stages.
Based on “tell-show-do” and positive reinforcement, the training of the child
to cooperate with the dental situation is also started on an individual basis,
provided by one of the dental team. Conscious sedation (inhalation sedation
with nitrous oxide/oxygen (N2O/O2) or oral, nasal or rectal sedation with
benzodiazepine) is used at the general dental clinics when required. GA is
always administered by medical staff in hospital day-stay settings and is
usually organised through specialist dental clinics.
22
Rationale for the thesis
Children with disabilities constitute a vulnerable group who need special
attention when planning oral health care from a short and long-term
perspective. The UNCRC20 and the CRPD38 state that a child with a disability
has the right to live a full life with an active part in the community and with
access to health care on an equal basis to everyone else. Although these
conventions may be ratified by a country (macrosystem), the organisation of
dental health care varies by country (exosystem), with different outcomes in
oral health and dental health care (mesosystem), resulting in substantial
differences in the impact it has on the individual child with disabilities
(microsystem) worldwide74,131,132. From a children’s rights perspective, there
is always a need for research that explores differences between countries, in
order to highlight possible inequalities in oral health and dental health care, as
oral health is an essential part of general health and oral diseases are
common74. Untreated oral disease can cause pain and infections, and affect
general health84,133-135. For those with complex disabilities, specialist dental
health care is often preferred. In children, dental caries is the dominant oral
disease and the necessary data about caries status in children with or without
medical diagnoses can be found in the literature and in national data
registries3,82,136-138. General knowledge on oral health in relation to functioning
in children with disabilities as a group is, however, insufficient.
Both a child’s ability to cooperate with dental health care and to accept simple
procedures in a dental clinical setting are indirect examples of the child’s
functioning, and must be considered when planning adequate oral health care
for that child. Within a biopsychosocial perspective, the individual’s
functioning is central. It may be hypothesised that a medical diagnosis gives
insufficient information about a child’s functioning and that a child’s
functioning is more related to oral health, i.e. dental caries, than the child’s
medical diagnosis is. Furthermore, it could be argued that child functioning is
more likely to influence the dental treatment modality, i.e. DGA, than the
medical diagnosis is. However, it is also more likely that DGA is ultimately
dependent on the dental health organisation context. There is a need for more
knowledge about oral health and oral health care in children with disabilities
from a wider perspective than the traditional medical model, including child
functioning as a factor. Functioning, however, is complex and ways to
simplify this concept need to be explored to make them more practical. The
23
ICF-CY makes it possible to assess, classify and analyse child functioning and
relate it to medical diagnoses and oral disease, as well as to the mode of dental
treatment, from a biopsychosocial perspective with a common, global
language in daily clinical oral health care as well as in research.
24
Aim
The overall aim of this thesis is to investigate how biopsychosocial factors are
related to oral health and specialist dental health care in children with
disabilities in a Swedish and an international context, with special focus on
the experience of DGA.
Specific aims
• To describe the medical, functional, social, and oral health aspects in
children with disabilities referred to specialist dental health care in
Sweden and internationally (articles I, II, IV).
• To investigate the relationship between medical diagnoses, oral health
and functioning in a group of Swedish children with complex
disabilities (article II).
• To describe the dental health care and treatment modalities provided
for children with complex disabilities who have been referred to a
specialist dentistry clinic and to investigate DGA and its relationship
to child functioning (articles III and IV).
• To describe and compare biopsychosocial aspects on DGA in children
with disabilities and manifest dental caries referred to specialist dental
health care in Argentina, France and Sweden. (article IV).
Hypotheses
This thesis does not present hypothesis generated research. However, there are
a few basic assumptions that make up the incentives for performing this
research:
1. A child’s medical diagnosis does not predict the child’s functioning
in a dental context.
2. A child’s functioning is more related to the experience of dental caries
than to the child’s medical diagnosis.
3. A child’s functioning is related to the experience of DGA.
4. Country context is a stronger factor for DGA than a child’s
functioning and dental caries experience.
25
Materials and methods
A schematic overview of the four articles included in the thesis is presented
in Appendix 1.
Design
In this thesis, a quantitative, cross-sectional, comparative descriptive design
is used, with data from a questionnaire and structured interviews. Data from
dental and medical records were collected retrospectively (articles I-IV). The
thesis contains two international multi-centre sub studies (articles I and IV).
One study (article I) was also part of a process of developing ICF-CY core
sets for oral health, with a methodology developed by the ICF Research
Branch of the WHO Collaborating Centre for the Family of International
Classifications (DIMDI, Germany) in partnership with the World Health
Organisation Classification, Terminology and Standards group (CTS)63.
Methodologically, the data analyses are based on variables (article I-IV) and
individuals with different functioning characteristics; individuals both in
homogenous person-based groups (articles II – IV) and as separate individuals
(articles III and IV).
Setting
The setting consists of specialist dental clinics that provide oral health care
and dental treatment for children on referral. Two centres in Argentina and
one centre in France, Ireland and Sweden, respectively, were included in
article I, and one centre each from Argentina, France and Sweden in article
IV. In articles I-IV, the same Swedish paediatric specialist dental clinic was
used, where the clinical staff comprises paediatric specialist dentists,
postgraduate dentists, dental hygienists and dental assistants. All dentists
involved in the thesis studies work at clinics with specialist dental health care
for children with disabilities and all involved clinics offer dental treatment
under sedation and GA, but apart from in Sweden (JN) and Argentina (GS),
the other examiners are not paediatric dental specialists. The countries were
chosen for convenience, because of personal contacts with researchers in the
respective countries.
26
Study participants
A visual description giving the number of study participants, their country of
origin and the study flow is shown in Figure 4.
Figure 4. An overview of the number and flow of participants in the four sub
studies of this thesis.
Inclusion criteria
Common inclusion criteria for all the sub studies were children not older than
16 years of age who had been referred to specialist dental services. An
overview of the age, sex and the major medical diagnoses for all sub studies
is presented in Table 1.
Additional inclusion criteria for the separate studies are as follows:
Large international multicentre study group (Article I)
Two hundred and eighteen children from Argentina, France, Ireland and
Sweden participated. Only 8% (18) of the children could reply to the interview
questions themselves, at least partly. Eleven per cent (24) of the children in
this group had dental anxiety without any other health conditions, 20 children
from France and four from Ireland. Almost all the children had a significant
Francen=82
Swedenn=56
Argentinan=55
Ire-landn=25
Largeinternationalstudy group(Article I)
Swedenn=101
(56 from Article I)Large Swedish study group(Articles II and III)
Swedenn=16(from
ArticlesII & III)
Francen=29
(from Article I)
Argentinan=38
International caries studygroup(Article IV)
27
ICD-DA dental diagnosis. Malocclusion or dentofacial anomaly, 44.0% (96),
together with dental caries, 42.6% (93), were the most frequent diagnoses.
Twenty children (8.1%), 11 from France and nine from Sweden had no
significant ICD-DA diagnosis.
Large Swedish study group (Articles II and III)
One hundred and four (104) children with complex disabilities were invited
to participate in this study. Three declined and 101 completed the interviews.
Two very young children were excluded after the structured interview due to
a high degree of missing answers, leaving 99 children for data analyses.
Sixteen children could reply to the interview questions themselves at least in
part.
Many children had more than one medical diagnosis. To be defined as having
a ‘complex disability’, the child had to be registered at the Child and Youth
Habilitation Services. The Swedish Child and Youth Habilitation Services are
free of charge and offered, by law, to children with more severe
impairments139. These children have congenital physical, cognitive and/ or
neuropsychiatric impairments or impairments acquired early in life. Children
with diagnoses belonging to the autism spectrum or children with ADHD
usually also have another impairment, such as a cognitive disorder, to be
eligible for the child habilitation services. The services are organised through
interprofessional teams that give advice and support, and treat children and
their families with the aim of maximising the child’s individual
potential73,140,141. The goal is to enable the children to live as independently as
possible when they grow up. A habilitation team often consists of a
paediatrician, physiotherapist, dietician, speech and language therapist,
psychologist, occupational therapist, special education teacher and social
worker. The team composition is, however, flexible, and designed according
to the needs and wishes of the child and family.
International dental caries study group (Article IV)
The inclusion criteria were children aged six to 16, with disabilities and
manifest dental caries, who had been referred to a specialist dental clinic in
Argentina, France or Sweden. A total of 83 children participated. The French
children were also part of the large international study and the Swedish
children were part of the large Swedish studies, whereof eight also were part
of the large international study. The Argentinian children were recruited
28
separately. The exclusion criteria were children with experience of dental
treatment under physical restraints.
Table 1. Demographic data and the number of children with major medical
diagnoses, classified in the dental records with ICD-10 (articles I-IV).
Instruments
The ICF-CY Checklist for Oral health
The ICF-CY Checklist for Oral Health was developed by Denise Faulks and
her co-workers in France as part of the preparation for the process of
establishing ICF-CY core sets for oral health (article I)63. The ICF-CY
Checklist for Oral Health was used in all four sub studies and is presented in
Appendix 2. The WHO standardised ICF Checklist was used as a base and
altered to suit children and oral health54,60. ICF-CY items replaced the original
ICF items when they differed. Child-specific items that only exist in the ICF-
CY, such as early language development, were added, as were items
specifically related to oral health. The oral health items were chosen from a
list published by Faulks & Hennequin in 200660.
Large international study group
(Article I)
Large
Swedish
study group
(Articles
II and III)
International caries study group
(Article IV)
Argentina
n=55
France
n=82
Ireland
n=25
Sweden
n=56
Total
n=218 n=99
Argentina
n=38
France
n=29
Sweden
n=16
Total
n=83
Mean age
in years
(±SD)
8.5
(±3.4)
8.7
(±3.3)
9.0
(±3.6)
8.6
(±4.1)
8.7
(±3.6)
8.1
(±4.0)
10.1
(±3.0)
9.8
(±2.1)
10.9
(±2.8)
10.3
(±2.8)
Boys/girls 38/17 53/29 15/10 37/19 143/75 66/33 21/17 22/7 12/4 55/28
Intellectual
disability49 55 12 50 166 86 31 28 15 74
Down
syndrome 15 15 5 13 48 24 4 4 1 9
Cerebral
palsy 11 0 1 7 19 15 15 0 1 16
Neuro-
psychiatric
disorder
12 10 5 8 35 16 11 8 5 24
29
The ICF-CY Checklist for Oral Health collected information about
demographics, medical and dental diagnoses, health-related issues such as the
need for assistance in daily life, and the subjective perception of the child’s
physical, mental, and oral health. No data about socio-economic status or
immigrant background was registered. Medical diagnoses were registered by
ICD-10 and dental with the ICD – Application to Dentistry and Stomatology
(ICD-DA)56,57. The checklist contained 128 ICF-CY items and the following
elements were recorded: the presence or absence of impairments regarding 43
items from the Body Functions and 23 items from the Body Structure
components; the presence or absence of difficulties in performance and
capacity of 37 items from the Activities and Participation component; and the
presence of barriers or facilitators for 25 items from the Environmental
component. The environmental items were chosen to capture factors from the
environments thought relevant for oral health and dental health care, both
close to and distant from the child. Examples are the attitudes of family and
friends in the microsystem, the services offered to enable oral health care in
the exosystem, and the national laws and health insurance regulations in the
macrosystem.
The extent of problems in each ICF-CY item was identified with the help of
ICF-CY qualifiers, rating the problems with a five-graded scale from 0 (no
problem) to 4 (complete problem) or identifying the item as ‘not specified’ or
‘not applicable’. The performance qualifiers describe what a person can do in
his or her own environment, where 0 means no problem, 1 mild, 2 moderate,
3 severe, and 4 means a complete problem. In addition, further relevant
information was noted free-hand, e.g., retrospective dental records data about
oral health status and dental treatment modalities. See Appendix 2 for more
information. When the checklist was completed, an evaluation of the ICF-CY
items was made with consideration of the expectations within the child’s
context and age, and some items could therefore not be applied to the younger
children, e.g., shopping. This post-evaluation was done in agreement between
the researchers.
The ICF-CY Checklist for Oral Health was produced in English, French,
Spanish and Swedish, using the pre-existing WHO translations of ICF items.
The Swedish version also went through a back-translation process, i.e. the
original was translated into Swedish and then translated back to English again
to check and adjust for any discrepancies.
30
Training of the investigators
Before the first data collection started, all of the international investigators
met for a full day in conjunction with an international scientific dental
conference in Ghent, Belgium, to learn about the ICF and to train in the use
of the ICF-CY Checklist for Oral Health. Case studies, item by item
illustrations, and peer reviews of the completed questionnaires were used in
the training process to ensure consensus and consistency. Questions during
the time of data collection, were handled, discussed and answered in
consensus through frequent e-mails between the researchers. Inter-rater
reliability was not tested for ethical and practical reasons.
Data Collection
Study participants were chosen by convenience. Children fulfilling the
inclusion criteria were recruited when attending the respective dental clinics
at times when the investigators were present. The children and parents were
then informed about the study, asked if they wanted to participate and, if they
were willing to take part, signed a written consent form. They could be
interviewed on this occasion or rescheduled for interview during a future visit
to the clinic. In Ireland, a ‘gatekeeper’ system was used, where a person
outside of the research project, informed potential participants about the study.
If they agreed to take part, they were later contacted by the investigator. The
interviews took place at the dental clinic, mainly with the parents but including
the child when possible. A few interviews were completed over the phone with
a parent.
The ICF-CY Checklist for Oral Health was completed by means of a
structured interview, the collection of retrospective data from medical and/or
dental records, direct observation and, if thought necessary, supplemented
with information from another dental professional. In article I, direct
observations were used in 90% of the ICF-CY Oral Health Checklists, but
there is no information on the use of the other information sources. No record
was kept of what measures for data collection were used for each specific
question or item. No clinical examinations were performed as part of the
studies. In cases where consensus between the parent/carer about the degree
of the child’s function, specified with the ICF-CY qualifiers, could not be
reached, the investigator’s clinical judgement decided on the extent of the
problem.
31
The number of decayed, missing and restored teeth in the primary and
permanent dentitions (dmft/DMFT), not including initial dental caries lesions,
were collected from the most recent examinations noted in the dental records.
All missing teeth were confirmed lost as a consequence of dental caries.
Information about earlier experiences of manifest dental caries, malocclusion,
tooth eruption disturbances, tooth malformation, dental trauma including late
complications of trauma, plaque, gingivitis, periodontitis, calculus and tooth
wear was also retrieved, as well as information about DGA, i.e., the reasons
for GA and the treatment performed, and if DGA was combined with other
medical examinations or interventions.
The time needed to complete the ICF-CY Checklist for Oral Health was
approximately 30-60 minutes for each child.
Data analysis
Microsoft Excel® was used when entering the data and central, double data
entry was performed; i.e., data was entered twice and compared to discover
any typographical errors. Statistical analyses were performed using IBM©
SPSS© Statistics version 20 (articles I and II) and version 21 (articles III
and IV).
Descriptive statistics were used to describe the study population and the
frequency of problems from the ICF-CY Checklist for Oral Health (articles I-
IV). Absolute and relative frequencies were calculated for the ICF-CY
components and comparison between groups on the shared limitations of the
ICF-CY item was made using the non-parametric techniques Chi-square test
(article I and IV), Mann-Whitney U Test (articles III and IV) and Kruskal-
Wallis Test (article IV). Non-parametric tests of the material were chosen
because the stringent assumptions of normal distribution were not met and
because the groups were small. The parametric alternative, the Independent t-
test, was used comparing age between groups (article III). Analyses were both
variable-oriented, where the results are discussed regarding relations among
variables (articles I-IV), and person-oriented, where individuals with similar
characteristics were grouped together in clusters (article II), and where
individuals with typical and atypical functioning patterns were identified and
presented separately (Articles III and IV).
32
Functioning factors
The ICF-CY performance qualifiers from the ICF-CY Activities and
Participation component were used to calculate the functioning factors
relevant in an oral health context (articles II-IV). The performance qualifiers
classify what an individual is able to do in his or her own environment36. The
degree of problems is rated from 0 to four where 0 = no problem, 1 = mild, 2
= moderate, 3 = severe and 4 = complete problem. There are also the options
of 8 = not specified and 9 = not applicable. Before continuing with further
analyses, a data cleaning procedure – as described earlier by Lee – was
performed, where qualifiers 8 and 9 were labelled as missing values142. ICF-
CY items with more than 10% missing values were excluded. The remaining
42 missing values out of a total of 3,069 in articles II and III and the two
missing values out of a total of 2,573 in article IV were replaced by the mean.
In this process, the entirety of chapter 6 “Domestic life”, chapter 8 “Major life
areas” and chapter 9 “Community, social and civic life” were excluded. To
identify functioning factors, three different methods were then used. In the
first, principle component analyses (PCA) were performed on the mean
performance for each item (article II). The Kaiser-Meyer Olkin measure of
sampling adequacy (KMO) and Bartlett’s test of sphericity proved that this
factor analysis model was adequate. The PCA resulted in two different
functioning factors, labelled after the character of the items included in each,
as presented in Table 2. In the second type of functioning factor analysis, the
mean performance of the categories in each ICF-CY chapters 1-5 and 7 from
the Activities and Participation component were used (article II). In the third
method, functioning factors were constructed by dichotomising the median
performance qualifiers in each chapter from the ICF-CY Activities and
Participation component (articles III and IV). A median of 1, 2, 3, or 4 was
labelled as a functioning problem, and 0 was labelled as no problem. The
chapter based functioning factors were named after the chapters and labelled
“Learning”, “Tasks & demands”, “Communication”, “Mobility”, “Self-care”
and “Interpersonal interactions”. The chapter-based functioning factors
calculated on the dichotomised median performance are presented in Table 3.
Internal reliability between the ICF-CY items in the different functioning
factors was calculated by Cronbach’s alpha analysis and the internal
consistency was very good, with the lowest alpha value being 0.794143.
33
Table 2. Items from the Activities and Participation component included in the
calculated functional factors. Items with a few missing values replaced by
means are underlined. Excluded items are presented in italics.
Physical ability
α=0.949
Intellectual ability, communication
and behaviour
α=0.945
d230 Carrying out daily routine d110 Watching
d410 Changing basic body position d115 Listening
d415 Maintaining a body position d120 Other purposeful sensing
d420 Transferring oneself d130 Copying
d430 Lifting and carrying objects
d440 Fine hand use
d131 Learning through simple actions
with a single object
d445 Hand and arm use d155 Acquiring skills
d510 Washing oneself d175 Solving problems
d520 Care for body parts
(e.g. tooth brushing)
d177 Making decisions
d210 Undertaking a single task
d550 Eating d220 Undertaking multiple tasks
d560 Drinking d235 Managing one’s own behaviour
d240 Handling stress and other
psychological demands
d310 Communicating with/receiving
spoken messages
d315 Communicating with/receiving
nonverbal messages
Excluded items d330 Speaking
d331 Preverbal vocalization d335 Producing nonverbal messages
d620 Acquisition of goods d710 Basic interpersonal interactions
and services
d630 Preparing meals
d720 Complex interpersonal
interactions
d820 School education d730 Relating with strangers
d9 Community, social and civic life d740 Formal relationships
34
Table 3. Items from the ICF-CY component Activities and Participation
included in the chapter-based functioning factors calculated on dichotomised
median performance qualifiers for children in the large Swedish study group
and the international dental caries study group with Cronbach’s α values for
the estimation of reliability between items in each chapter for the respective
study group (articles III and IV).
Chapter/functioning factor Items α
III IV
1 Learning (using senses,
applying knowledge, acquiring
skills, solving problems,
making decisions)
d110, d115,
d120, d130,
d131, d155,
d175, d177
0.905 0.923
2 General tasks and demands
(carrying out single or multiple
tasks, managing routines,
handling stress)
d210, d220,
d230, d250,
d240
0.796 0.885
3 Communication (language,
signs and symbols, receiving
and producing messages)
d310, d315,
d330, d335
0.844 0.909
4 Mobility (changing and
maintaining body position,
transferring oneself, carrying,
moving or manipulating objects)
d410, d415,
d420, d430,
d440, d445
0.925 0.941
5 Self-care (washing and drying
oneself, caring for body parts,
eating and drinking)
d510, d520,
d550, d560
0.923 0.856
7 Interpersonal interactions and
relationships (carrying out the actions and
tasks required for basic and complex
interactions with people in a contextually and
socially appropriate manner)
d710, d720,
d730, d740
0.794 0.942
To cluster individuals with similar functioning profiles, a K-means cluster
analysis was performed based on the functioning factors calculated by PCA,
testing the different numbers of clusters before deciding on a meaningful
number (Article II). Significant differences between the functioning factors
of the clusters was the main basis for this decision. ANOVA was undertaken
on the functioning factors, together with age and dental caries experience
based on the clusters.
35
To assess the impact of functioning on the likelihood of having had DGA,
logistic regression analyses were performed on the chapter-based functioning
factors calculated on mean performance (Article III) and calculated on the
dichotomised performance (Article IV). Young age of the children was
considered to influence the experience of DGA and only children aged six
years or older were included in these analyses. Prior to the logistic regression
in children with disabilities and manifest dental caries, Pearson product-
moment correlations between DGA, dental caries prevalence and functioning
factors were calculated to assess patterns of correlation between variables
(Article IV).
Ethical considerations
Several aspects regarding ethical issues must be considered in research where
human beings are involved. The basic ethical principles normally addressed
in research, as well as in clinical work, are the principles of autonomy (the
right to make your own choice), non-maleficence (do no harm), beneficence
(act in the best interests of the individual) and justice (fairness and
equality)144,145. The Helsinki Declaration on Ethical Principles for Medical
Research Involving Human Subjects, recognised in most of the world, is the
most important document concerning research ethics146. The Helsinki
declaration’s 19th and 20th general principles are directly targeted at
vulnerable groups, as are guidelines 14 and 15 in the International Guidelines
for Biomedical Research Involving Human Subjects issued by the Council for
International Organizations of Medical Sciences (CIOMS) in collaboration
with the WHO145,146. In this thesis, all participants were children and
adolescents, most of them with complex disabilities. Children are more
vulnerable than adults, and children with disabilities may be even more
exposed to violations of their autonomy and integrity. Children do not have
the full capacity to judge and understand the potential risks and possible
consequences involved with participation in research, thus making this kind
of research more problematic from an ethical perspective147. At the same time,
to guarantee future quality of care, it is important to include children, with or
without disabilities, in these studies38,147. Since young children and children
with intellectual disabilities have not reached full autonomy, their parents
must substitute their autonomy, but as soon as the child can express his or her
36
own will this has to be considered. Children have the right to receive
information adapted to their age and level of maturity148-150. Regardless of age,
all children should be met with respect and if there is a conflict of interest, the
best interests of the child are prioritised before the adult151.
Specific ethical dilemmas concerning this thesis
Impaired autonomy: The most obvious ethical problem is that all the study
participants had impaired autonomy, either because of their young age or their
disabilities, or both. The information about study participation was therefore
presented in two versions, one for adults and a simplified version for children,
supplemented with pictures. Information was also given verbally, both to
parents and to the children. Parents substituted autonomy for their children
when needed, but the child’s consent to participate was the goal when
possible.
Violation of integrity: Interviews and the retrospective collection of data from
dental and medical records did not involve any physical discomfort. Most of
the questions were not different from those that are part of a conventional
medical history taken in the clinic. It could not, however, be completely ruled
out that some of the questions could be conceived as violating integrity, and
that some may have had the potential to initiate unpleasant thoughts and
reflection. To manage such thoughts and possible questions, a specific, named
person, not involved in the studies, was appointed at the beginning of the large
Swedish study. None of the children or their parents requested this person’s
help at any time. There was no equivalent procedure in the other countries.
Time: Time-consuming interviews may constitute an ethical dilemma,
especially for families with children with disabilities, who are often pressed
for time101. To eliminate this as much as possible, the interviews were linked
to a planned, regular visit to the clinic, prolonging this appointment by
approximately 20 to 60 minutes. A few individuals chose to complete the
interview over the phone shortly after the visit to the clinic.
Dependability: The Swedish researcher (JN) was or had been the dentist for
many of the children in the study, which may have made it more difficult for
them to decline participation. To avoid this, it was clearly pointed out in both
the written and verbal study information that declining to participate in the
study would not jeopardise dental care. Also, the very first question to the
child and parents – whether they were interested in being invited to take part
37
in the study – was made by another person at the clinic. The problem of
dependability was not relevant in the other countries involved in the studies.
Handling sensitive personal information: A de-identification process for all
the collected data was done, where the key to the codes was stored separately.
The results are presented in a way that makes the identification of individuals
impossible for anyone outside the research group or, possibly, in the inner
circle of care-givers.
Ethical approval: All studies were approved by an ethical board, or
equivalent, in each country. Respectively: in Sweden, by the Regional Ethical
Review Board, Linköping University (Dnr 2011/9-31); in France, by Comité
d'Ethique des Centres d'Investigation Clinique de l'Inter-région Rhône-Alpes-
Auvergne; in Argentina, by CIEIS Comité Institucional de Etica en
Investigcion en Salud, Universidad National de Cordoba; and in Ireland, by
the Faculty Research Ethics Committee, Trinity College, Dublin.
38
Results
The results are presented with an initial summary of the most significant
results considering the overall aim of the thesis, arranged in Ecological
Systems (Figure 5), and followed by the results of the specific aims embedded
in the three different study parts.
Figure 5. Some of the results arranged according the Ecological Systems
Theory50. The arrows symbolise the direction of interactions influencing
some aspects of oral health and oral health care in children with disabilities
(articles I-IV).
Medical diagnosis (I,II)Oral health (I-IV)Functioning (I-IV)
Family is a facilitator (I,II)
Microsystem
Mesosystem
Exosystem
Macrosystem
Problems in functioning increaseodds for DGA (III,IV)
Pro
ble
ms
in f
un
ctio
nin
gd
ecre
ase
od
ds
for
DG
A (
IV)
Pro
blem
s in fu
nctio
nin
gco
rrelatedto
den
tal caries
(IV)In
terp
rofe
ssio
nal
colla
bo
rati
on
and
D
GA
ses
sio
ns
join
edw
ith
med
ical
inte
rven
tio
ns
(III,
IV)
Accessibility to DGA (IV)
Country context important for DGA (IV)
Soci
etal
atti
tud
es(I
,IV
)
Earlyreferrals
to p
aediatric
den
tistry(III)
Social secu
rity, social su
pp
ort,
health
care(IV
)
39
Large international multicentre study group (Article I)
The medical, functional, social and oral health aspects
internationally (Article I)
The ICF-CY Checklist for Oral Health identified functional, social and
environmental aspects in children referred for specialist dental health care in
Argentina, France, Ireland and Sweden. Both similarities and differences
between the countries were found. Fifty-six (41%) of the chosen ICF-CY
categories from the Body Functions, Body Structures and Activities and
Participation components were identified as at least being mildly impaired in
over half of the study population. Only one environmental factor, ‘Societal
attitudes’, e460, was considered a barrier by more than half of the study
population, but with significant differences between countries. In the Body
Structures component, only ‘Structure of teeth’, s3200, was impaired in over
50% of the study population. The prevalence of the ICF-CY categories from
each component, with the most frequently noted problems or environmental
facilitators/barriers, is listed in Table 3, together with dental caries prevalence
based on data collected from the dental records. Significant differences
between countries were calculated with the X2 test.
40
Table 4. The ICF-CY categories with the most frequently recorded problems or facilitators/barriers; prevalence per country and in the large international study group and dental caries prevalence recorded in the dental records by ICD-DA. Differences between countries calculated with X2.
41
Large Swedish study (Articles II and III)
The medical, functional, social and oral health aspects in a
Swedish setting
The 99 children with disabilities referred to a paediatric dental specialist clinic
in Sweden showed a broad variety of medical diagnoses (Table 1). Thirty had
a rare diagnosis, defined as occurring in less than one in 10,000 individuals152.
Twenty children had experience of having had manifest dental caries. Oral
health data collected from the dental records are presented in Table 5. The
most impaired body structure, the three most common impairments from the
Body Functions component and the three most common limitations in
performance from the component Activities and Participation are listed in
Table 6, together with the three most common facilitators and two most
common barriers from the Environmental component.
Table 5. Prevalence of significant oral health diagnoses recorded in the
dental records in the large Swedish study group and mean dmft/DMFT and
(articles II and III).
Oral health diagnosis Number of children n=99
Orthodontic diagnosis 30
Tooth formation disturbance 20
Plaque and calculus 19
Significant tooth wear 12
Tooth eruption disturbances 12
Gingivitis, periodontitis 11
Manifest dental caries 7
Dental trauma including sequels 6
No oral diagnosis 28
Mean dmft/DMFT ±SD
(range)
0.8±2.11
(0-12)
42
Table 6. Prevalence of the ICF-CY categories with the most reported problems
or facilitator/barriers from each component in the large Swedish study group,
n=99 (articles II and III).
ICF-CY
components
ICF-CY categories Problems or
facilitator/barrier
Body Functions
Intellectual functions, b117 88%
Higher-level cognitive functions,
b164
85%
Mental functions of language,
b167
79%
Body Structures
Structure of the teeth, s3200 45%
Activities &
Participation
Acquiring skills, d155 86%
Solving problems, d175 81%
Speaking, d330 79%
Environmental
factors
(facilitator)
Support from immediate family,
e310
100%
Attitudes from immediate family,
e410
97%
Health care services, e580 96%
Environmental
factors
(facilitator/barrier)
Support from people in decision-
making positions, e330
64% / 30%
Societal attitudes, e460 44% / 30%
Relationship between medical diagnoses, oral health and
functioning
The two PCA-calculated functioning factors thought to be relevant in an oral
health context, “Physical ability” and “Intellectual ability, communication and
behaviour”, presented in Table 2, were used in the cluster analysis that resulted
in three clusters of children with different functioning profiles (Figure 6). Two
clusters were small, with 7 and 21 children respectively, compared to the one
large cluster that included 71 children with a lower grade of problems in both
functional factors. The very smallest cluster consisted of children with
43
moderate to severe problems in physical ability but mild problems in
intellectual ability, communication and behaviour. The medium-sized cluster
was children with moderate to severe problems in both functioning factors.
An in-depth analysis with more detailed functioning profiles, based on the
mean performance of items in the Activities and Participation component
chapters, was performed to see differences between individuals within the
largest cluster. This analysis resulted in two sub-groups where one group
profile, with 47 children, showed low-level problems in all six chapter-based
aspects of functioning, with a mean rating of performance qualifiers between
0.2 and 0.6.
There were no significant differences in age or dmft/DMFT between the three
cluster groups. Children with Down syndrome (n=24) and cerebral palsy
(n=15) constituted the largest diagnosis groups in the study, and they were
represented in all clusters. Thirteen per cent of the children in each of these
two diagnosis groups had experience of manifest dental caries. Of the sixteen
children with diagnoses involving symptoms classified as behavioural
problems (e.g., Autism spectrum disorders (ASD) and attention
deficit/hyperactivity disorder (ADHD)), seven (44%) had dental caries
experience, while caries experience was found in 19 (22%) of the 86 children
with an intellectual disability (ID) (article II). Children could be classified as
belonging to more than one of the diagnosis groups outlined here and there
were too few children with dental caries in some of the groups to make reliable
significance tests adequate.
44
Figure 6. Clusters of children with disabilities regarding mean performance
problems (0-4) in the PCA calculated functional factors ‘Physical ability’ and
‘Intellectual ability, communication and behaviour’ (article II).
Specialised dental health care in a Swedish setting
The mean age for referral to the paediatric dental specialist clinic was 2.4±2.3
years (0.2-10.5) and 87 (88%) referrals were sent by a paediatrician
considering the child at risk both of and if developing oral health problems, or
as part of national guidelines (i.e., children with Down syndrome). Ten
children had been referred from a general dentist and two from an orthodontic
specialist. Children with experience of manifest caries had been referred to the
specialist clinic at the mean age of 3.4±2.5 years, significantly older than
children without manifest dental caries experience with a mean referral age
2.2±2.2 years (independent t-test, p=0.036). All children except two had
received age-adapted training for the dental setting, combined with oral
disease prevention. This training had mainly been performed by a dental
0
1
2
3
4
Cluster 1, n=21
Cluster 2, n=7
Cluster 3, n=71
Level ofproblem
45
hygienist and was aimed primarily at teaching the child to feel secure in the
dental chair and be able to cooperate with tooth brushing, tooth polishing,
application of fluoride varnish, dental examination and radiographs. Of the 20
children with manifest caries experience, 13 had had DGA, three N2O/O2
inhalation sedation, one benzodiazepine sedation and two had not yet received
any treatment.
Seven (7%) children had received dental treatment with the help of
benzodiazepine sedation and 23 (23%) with N2O/O2 inhalation sedation while
37 (37%) children had had DGA, 11 of them when they were five years or
younger and 26 when they were six years or older. There were 92 DGA
sessions performed in the whole group of 99 children with a range from 0-25.
In 69 (75%) of these sessions, dental treatment was combined with
examination and/or treatment performed by other medical specialities, most
often ear-nose-and throat (ENT), ophthalmology and radiology. One 14-year-
old individual with a rare diagnosis had experience of 25 DGA sessions, with
the main indication for GA being medical, where dental scaling due to
extensive calculus build-up was combined with medical interventions. The
most common dental indications for DGA were examination with or without
radiographs and preventive care, with or without fissure sealants, performed
in 28 sessions, of which 25 involved combined dental/medical measures.
Other reasons for dental treatment were dental trauma, orthodontic
extractions, frenuloplasty and dental impressions. All the DGA sessions for
scaling, frenuloplasties and dental impressions were combined dental/medical
sessions.
Child functioning and DGA in a Swedish setting
The body function “Intellectual functions”, b117, was compared between
children six years or older who had experienced DGA or not. The Mann-
Whitney U Test showed that the children who had experienced dental
treatment under GA had more problems in intellectual functions, as rated by
ICF-CY qualifiers, than those without DGA experience (p= .038, z= -2.07).
The logistic regression analysis of the chapter-based functioning factors,
calculated on dichotomised median performance, is presented in table 7 and
shows that children six years or older with problems in their interpersonal
relationships and interactions with others had significantly higher odds of
having experienced DGA than children without the same problems. However,
46
two children with experiences of DGA presented with atypical functional
profiles. From the data, documented by free-hand in the ICF-CY Oral Health
Check List, it could be concluded that these children cooperated well with
most dental procedures and had no problems in their interpersonal
relationships and interactions, but they were afraid of the local anaesthesia
procedure. Thus, the indication for GA was dental anxiety. The full regression
model was statistically significant, χ2 = 18.1, p=0.006 and explained between
24.0% (Cox & Snell R square) and 32.3% (Nagelkerke R square) of the
variance in having dental treatment under GA, and correctly classified 74.2%
of cases.
Table 7. Functioning factors identified with the ICF-CY in children six years or
older influencing the likelihood of having DGA (n=66), calculated by direct
logistic regression.
Dental treatment
under general
anaesthesia
Functioning factors p Odds Ratio 95% CI
Learning
0.379 0.48 0.10-2.44
Tasks & demands
0.775 1.28 0.24-6.77
Communication
0.769 1.24 0.30-5.09
Mobility
0.059 0.24 0.05-1.06
Self-care
0.299 2.23 0.49-10.15
Interpersonal interactions
and relationships
0.002 10.37 2.37-45.29
47
International dental caries study (Article IV)
Mean dmft/DMFT for the whole group of children from Argentina, France
and Sweden was 7.0±5.4 (R1-27, Md 6.0) with significant differences between
countries. The number of children with experience of dental treatment under
sedation or GA, undertaken when the child was six years or older is presented
in Table 8. Chi-square test for independence showed significant differences
between countries and children with experience of DGA, X2 (2, n=83) = 13.2,
p < 0.001. Nine Swedish, one French and no Argentinian children had had
combined dental and medical procedures performed during the same GA
session. Manifest dental caries prevalence (dmft/DMFT) for those children
who have had DGA and those who have not, in the different countries, is
shown in Table 9.
Table 8. Number of children aged six years or older with experience of dental
treatment under sedation or GA. In brackets the percentage of study
participants in the total group and within each country, respectively.
Argentina
n=38
France
n=29
Sweden
n=16
Total
n=83
N2O/O2
inhalation
sedation
0
26
(90%)
6
(38%)
32
(39%)
Benzodiazepine
sedation
3
(8%)
8
(28%)
2
(13%)
13
(16%)
GA 11
(29%)
16
(55%)
13
(81%)
40
(48%)
48
Table 9. Manifest dental caries prevalence (dmft/DMFT) for children with and
without experience of DGA (Mann-Whitney U Test). Mean dmft/DMFT and
standard deviation in italics. X2 calculated between DGA and no DGA experience.
Median dmft/DMFT (range)
Mean dmf/DMFT; SD
Argentina
n=38
6.0 (1-14)
6.8; S.D. 4.2
France
n=29
6.0 (1-27)
9.1; S.D. 6.8
Sweden
n=16
2.5 (1-10)
3.6; S.D.2.6
Total group
n=83
6.0 (1-27)
7.0; S.D. 5.4
DGA 10.0 (4-14)
9.5; S.D.3.5
n=11
12.0 (4-27)
13.0; S.D. 6.6
n=16
3.0 (1-10)
3.9; S.D. 2.8
n=13
7.5 (1-27)
9.1; S.D. 6.1
n=40
X2 p=0.009 p=0.000 n. s. p=0.001
No
DGA
4.0 (1-14)
5.7; S.D. 4.0
n=27
4.0 (1-14)
4.4; S.D. 3.3
n=13
2.0 (1-4)
2.3; S.D. 1.5
n=3
4.0 (1-14)
5.1; S.D. 3.8
n=43
Children with experience of DGA had a significantly higher degree of
problems (median score 3, severe) identified in ‘Intellectual functions’, b117,
from the ICF-CY Body Functions component, compared to the children
without experience of DGA (median score 1, mild), calculated by Mann-
Whitney U Test (p=.001, z=-3.28). A comparison of problems in ‘Intellectual
functions’, b117, between countries indicates significant differences in
severity (Kruskal Wallis Test, X2 (2, n=83) = 11.15, p=.004). The French
group recorded more severe problems (Md = 3) than the Swedish (Md = 2)
and Argentinian groups (Md = 1).
Functioning factors were calculated, based on the dichotomised median
performance in chapters from the Activities and Participation component. A
comparison of the functioning factors between the groups of children from the
different countries is presented in Table 10. Representative functioning
profiles of one child with and one child without DGA experience are shown
in Figure 7.
49
Table 10. Comparison of functioning factors between the country-based
groups of children participating in the study (Kruskal Wallis Test, 2 degrees of
freedom).
Functioning
factors
p Median
ICF-CY performance qualifier
Argentina France Sweden
Learning 0.006 1 1.5 0
Tasks & demands 0.061 1 2 1
Communication 0.007 1 2 0.75
Mobility 0.001 0.75 0 0
Self-care 0.16 1 1 0.25
Interpersonal
interactions and
relationships
0.001 1 2 0.5
50
Figure 7. Example of individual functioning profiles, based on the mean
performance qualifier in the chapter-based ICF-CY functioning factors, of
two children with disabilities and manifest dental caries, one with and one
without experience of DGA.
The environmental factors ‘Support of health personnel’, e355, ‘Support of
family’, e310, and ‘Support of personal assistants’, e340, were the most
regularly classified as facilitators – 93%, 87% and 83% respectively – by the
total group. The environmental factors most frequently considered to be
barriers are listed in Table 11.
0
1
2
3
4
DGA
No DGA
Level offunctioningproblems
51
Table 11. The frequency of environmental factors considered barriers for a
majority of the study participants in Argentina, France or Sweden. Comparison
calculations between countries (Chi-square test for independence) are based
on numbers.
Argentina France Sweden Total X2
p
Societal attitudes,
e460
18%
59%
38%
36%
0.003
Transportation,
e540
63% 7% 0 31% 0.000
Social security,
e570
84% 10% 13% 45% 0.000
General social
support, e575
92% 7% 6% 46% 0.000
Health care, e580 92% 38% 6% 57% 0.000
Education and
training, e5850
92% 17% 6% 49% 0.000
Special education
and training,
e5853
95% 17% 0 49% 0.000
A correlation analysis performed to determine the relationships between
DGA, manifest dental caries experience and the functioning factors suggested
that, while dmft/DMFT had a significant and medium correlation with
experience of DGA, problems in interpersonal interactions and relationships
also had a significant but weak correlation with DGA. Problems in mobility
had significant and negative correlation to DGA experience. Separate logistic
regression analyses of each functioning factor, revealed that problems in
interpersonal relationships and interactions significantly increased (O.R. 5.3,
p=0.015), while mobility problems significantly decreased (O.R. .4, p=0.048),
the likelihood of having experienced DGA. No other functioning factors were
found to have a significant impact on DGA. In a direct logistic regression
analysis on dmft/DMFT and all child functioning factors together, only
52
severity of caries as a factor for having experienced DGA was found to be
significant (p=0.002). For every additional decayed, missing or filled tooth,
measured as dmft/DMFT, the odds for having had DGA increased by 20%. It
was statistically not possible to add the country, an example of a direct
indicator of dental service organisation, as a factor to the logistic regression
model, due to too low numbers of Swedish children without DGA experience.
The results also indicate that there is a collinearity between manifest dental
caries experience and problems in interpersonal interactions and relationships
for this group.
53
Discussion
Methodological considerations
This thesis takes a quantitative approach, and although there were no
experimental elements, validity and reliability will be the concepts discussed.
Referring to Kazdin there are four types of validity that need to be considered
to be able to draw well-founded conclusions: internal validity, external
validity, construct validity and statistical conclusion validity153.
Internal validity
Internal validity refers to whether the conclusions based on a study’s results
are credible or not; i.e., how well the study conforms with reality. This thesis
has aimed to investigate oral health and dental health care in the clinical
setting as it really is. The biopsychosocial approach is completely in line with
this objective. In the large international study, the supposed need for specialist
dental services was the inclusion criteria and in the large Swedish study, the
definition was specified to include children both in need of specialist dental
health care and services from the child and youth habilitation centre. The
ambiguity in these definitions could be a threat to internal validity by selection
bias. However, the intention was to investigate and describe children with
disabilities within specialist dental health care from a biopsychosocial
perspective, and the study cohorts were children as they presented when they
become patients at the specialist dental clinics involved. Selection bias is
therefore considered low. In addition, very few children declined to participate
in the large Swedish study group.
Instrumentation, a threat to internal validity, refers in this thesis to how the
completion of the ICF-CY Check List for Oral Health was done. Before the
start of the data collection, all examiners participated in a joint, full day ICF-
CY Check List for Oral Health training session. Fictive cases were coded,
followed by peer-review discussions and consensus. New questions, which
arose during the time of data collection, were exchanged and discussed
subsequently by e-mail, to ensure that all examiners applied the same
interpretation criteria.
54
External validity
Sample characteristics may be a threat to external validity and make results
unsuitable for application to individuals outside of the study groups. With
reference to the previous internal validity discussion, the study subjects were
included with the purpose of reflecting a patient cohort at a specialist dental
clinic and, as such, this specific threat is low. The results show no significant
differences in age and sex between the study groups from the different
countries, and although differences were found, children with different
country contexts still shared many biopsychosocial factors, which strengthens
the external validity. However, the children were invited to participate in the
study by convenience, and recruited consecutively upon appointment at the
respective dental clinics. Characteristics such as immigrant background or the
socio-economic situation of the children’s families were not taken into
account, despite these factors being well-known as issues that affect oral
health and dental health care. In France, however, although there are no
restrictions for asking about socioeconomic status, it is expressly forbidden to
collect data regarding immigrant background.
Reactivity of assessment might constitute another threat to external validity.
Parents may describe their child’s performance as better or worse than it
would be described if measured objectively. During the interviews, the parent
was instructed to assess the level of the child’s performance in comparison to
that of a sibling or corresponding child with typical development. Consensus
between the parent and interviewer was desirable, but the interviewer made
the final decision using their clinical judgement. How many times any
discrepancies occurred was not registered.
The ICF-CY Checklist for Oral Health was used to collect data about children
from different countries with different health and oral health organisations. To
use the ICF-CY to assess child functioning is, by definition, generalisable, and
the method used to study child functioning in relation to oral health and dental
health care can be used anywhere. Many of the problems identified by the
checklist were found to be common in the international and the large Swedish
study groups. The functional factors with significant impact on DGA were
also shared between children with disabilities and manifest dental caries from
three different countries. However, the results of the international dental caries
study highlight the importance of always considering the context of where a
study is performed before drawing general conclusions.
55
Construct validity
It could be questioned if the ICF-CY Check List for Oral Health contained
enough ICF-CY items to give a proper understanding of the child’s
functioning in relation to oral health and dental health care. Narrow sampling
would be a threat to the construct validity. The ICF-CY Checklist for Oral
Health is an adaption of the ICF Check List constructed by the WHO, with the
most relevant ICF items chosen for the clinic, and it consisted of 128 items.
An extended ICF Check List, such as the ICF-CY Check List for Oral Health,
is the data collection tool used for the empirical preliminary study in the ICF
core set process. In addition, it was possible to add items not pre-listed:
drooling was one such item. Every included and excluded ICF-CY item in the
analyses of functioning factors is presented; hence, it is possible to see how
the construction of child functioning in this study was conceived. Due to
statistical procedures, three chapters, with in total five items from the
Activities and Participation component, were excluded from the functioning
factors, which might threaten the construct validity. The few ICF-CY items
included from these chapters suggest, however, that their impact on oral health
and dental health care was regarded as low.
Statistical conclusion validity
Sample size calculation was only undertaken for the large international study,
ensuring statistical power, as this was also the empirical study for the
preliminary studies in the ICF-CY core set process. In the large Swedish
study, a convenience sample was used, where most children with disabilities
visiting the department for paediatric dentistry during the time of data
collection were included. It was not possible to perform certain statistical
analyses, such as logistic regression with country as a factor, in the
international dental caries study, since the subgroups were too small. Non-
parametric tests were chosen when appropriate.
Assumptions might also have been violated because of subject heterogeneity,
but since the ICF-CY is age adapted and ICF-CY functioning factors are not
dependent on aetiology, heterogeneity should not be a problem in this thesis.
The fact that socioeconomic factors were not controlled for may, however,
constitute a threat to the statistical validity.
Since it is children and not variables that visit the dental clinic, articles II-IV
in this study include a person-oriented approach in order to better understand
56
functioning in children with disabilities within the sphere of oral health and
dental health care. Individuals were categorised and clustered together in
homogenous groups based on functioning. Person-based analyses are sensitive
to incomplete data and outliers, i.e. individuals with atypical patterns. In this
thesis, there were only a few outliers and very little incomplete data, which is
a strength. The standardisation of variables may increase the risk of missing
existing relationships, however, a reduction of factors in the construction of
the functioning factors was necessary.
Reliability considerations
As previously explained, all examiners went through a joint ICF-CY
education and training session. However, mainly for ethical reasons, but also
for practicality, neither inter- or intra-examiner consistency was calculated.
The ethical reasons primarily refer to the non-maleficence principle. It was
difficult to justify the burden of repeating the interview process with children
with complex disabilities and their parents, families who are already pressed
for time. Calibration with repeated interviews with the same children was also
not possible to organise with investigators in different languages.
The reliability of the ICF qualifiers have been discussed in several
publications, and for most of the analyses in this study a qualifier value of 1
or more was considered an impact on the ICF-CY item in question (article I)
and was dichotomised to a functional limitation (articles III and IV)154-156. This
is an action recommended by the ICF research group to increase reliability,
but was not used for the functioning factor calculations in article II157.
Information noted in the dental charts was recorded by different clinicians
(specialist dentists, dentists in postgraduate dental education, and dental
hygienists) and the notations were all made as part of clinical work with no
research purpose. At the Swedish clinic involved, the importance of high
qualitative record notes is continuously discussed as part of postgraduate
dental education. Only coarse and “non-questionable” data was collected, but
it can still, however, be assumed that oral disease is likely to be under-
recorded with a risk of missing results. However, in the clinic, this is the data
that the dental treatment plan is based upon and therefore it was considered
relevant for this thesis.
Dental caries is more common in children with low socio-economic
backgrounds and in children with immigrant backgrounds, but this data was
57
not collected158-160. This could be an indirect confounder when relating dental
treatment to functioning or medical diagnoses. Concerning the large Swedish
study, it could be argued that since dental caries prevalence among the
Swedish children was low, this should not have been a serious threat. On the
other hand, there is also a possibility that families with an immigrant
background and/or low socioeconomic circumstances would experience
difficulties in accessing the specialist clinic, absorbing all of the information
and following all of the demands from dental professionals about their child’s
oral health, and therefore may have waived specialist dental health care. If this
was common, it could have had an effect on the low dental caries prevalence,
but it is difficult to tell as it was not investigated.
In conclusion, there are possible threats to the validity and reliability of the
results of this thesis. The ambition has been to present the procedures
performed, making them as easy as possible to follow and to comprehend, in
order to be able to judge the different aspects.
Discussion of results
The ICF-CY Checklist for Oral Health identified both common and varying
functional, social and environmental aspects that are relevant for oral health
and oral health care in children referred to specialist dental clinics in four
countries. Medical diagnoses were not found to be significantly correlated
with dental caries or child functioning in Swedish children with complex
disabilities and low caries prevalence, nor was a significant relationship found
between dental caries and child functioning. Collinearity between dental
caries and problems in the functioning factor ‘Interpersonal interactions and
relationships’ was, however, observed in a group of children with disabilities
and manifest dental caries from Argentina, France and Sweden, which
indicates that child functioning may have a relation to dental caries in this
group. The Swedish children with disabilities and without dental caries
experience had been referred to the paediatric dental specialist clinic at an
earlier age than the children with caries experience. A majority of the DGA
sessions in Sweden were combined with medical interventions. Problems in
child functioning on both the body level, classified by the ICF-CY category
‘Intellectual functions’, b117, and the activity and participation level,
classified by the functioning factors ‘Interpersonal interactions and
58
relationships’ and ‘Mobility’, had a significant impact on experience of DGA.
Children with experience of DGA had more severe problems in intellectual
functions. Problems in interpersonal interactions and relationships also
increased the likelihood of having had DGA, while problems with mobility
decreased the likelihood of having the experience of DGA. In the group of
children with manifest dental caries from Argentina, France and Sweden,
dmft/DMFT was significantly higher in children with experience of DGA than
in those treated without GA. However, looking at each country separately, this
was not the case for the Swedish children. Significant international differences
between the environmental barriers involved, together with major differences
in the proportion of DGA between countries, strongly indicate that country
context and the organisation of dental health care are ultimately the most
important factors in determining DGA in children with disabilities.
The child and the microsystem
Oral health
In this thesis, to make concepts clearer for the reader, the discussion of the
results concerning oral health is placed in the microsystem, as part of the
child’s experience in a family situation. Parents, together with the children
themselves, are responsible for everyday oral health procedures. In the
background information of the thesis, oral health is presented as part of the
child’s experience in the microsystem and the mesosystem, since oral health
and poor oral health can be regarded as the outcomes of direct interventions
between the child and oral health care personnel in the mesosystem. They
may, however, also be an indirect result of barriers or facilitators in the local
oral health organisation and the dental clinic in the exosystem or the national
rules, regulations and health insurance policies in the macrosystem. In
addition, oral health status, exemplified by manifest dental caries, may also
have an impact on the interactions between the child and the oral health care
personnel in the mesosystem.
It is impossible to discuss dental treatment without considering dental caries,
since manifest dental caries often demands active treatment, which in children
with disabilities can lead to dental treatment under sedation and general
anaesthesia. A significant relationship between child functioning and dental
caries could not be established in this thesis. However, a couple of indications
were noted that suggest that dental caries may relate to functional problems.
59
Firstly, in the large Swedish study group, children with ASD were grouped
together with children with ADHD and other diagnoses based on behavioural
symptoms, and this group had more dental caries than the diagnosis groups of
Down syndrome and cerebral palsy, and double the caries frequency than all
the children with intellectual disabilities put together. ADHD and ASD are
both criteria-based diagnoses, decided on deviations in behaviour that affect
functioning in everyday life situations. In the processes of establishing the
ICF-CY core sets for ASD, de Schipper et al concluded that the most common
problems in the ICF-CY Activities and Participation component were ‘Basic’
and ‘Complex interpersonal interactions’, d710 and d720, respectively, noted
for about half of their study population161. In another study, problems in
‘Complex interpersonal interactions’ was the second most common issue,
recorded for 44% of children with ADHD162. Assuming that many of the
children in the mixed group of behavioural-based diagnoses in this thesis share
these problems in interpersonal interactions, it is an indication of how
functioning can relate to dental caries. Secondly, the finding that there was a
collinearity between the functioning factor ‘Interpersonal interactions and
relationships’ and dmft/DMFT in the international dental caries group also
suggests that dental caries was related to functional problems in this study
group where caries experience, was higher than in the large Swedish study
group.
As assumed, this thesis did not find that the children’s medical diagnoses were
strongly related to oral health, in terms of dental caries experience. Although
the children in the mixed behaviour-based diagnosis group in the large
Swedish study had a higher frequency of dental caries experience than in the
other diagnoses groups, many of them had multiple medical diagnoses and
belonged to more than one of these groups. In some studies, children with
diagnoses such as ADHD and ASD show higher dental caries prevalence than
children with typical development but in other studies the opposite was found
or no significant differences at all10,138,163,164. In many articles, reference books
and databases describing medical/genetic diseases, dental caries is mentioned
as a common symptom. This is more likely a reflection of the oral health
situation and dental health care organisation at the time and place when the
syndrome was described the first time, or where the data was collected, than
having anything to do with the medical/genetic condition itself. When it
concerns rare diagnoses, it is also possible that much information is based on
single case reports that, thus, have a disproportionate influence. It is always
60
important to take study context into account when evaluating results.
Nevertheless, some specific diagnoses on a group level can be indirectly
related to an increased risk of dental caries, e.g., a higher prevalence of tooth
mineralisation defects, medication with low salivary secretion as a side effect
or maybe, as discussed in the section above, functioning factors5,138,162,165,166.
The child and the mesosystem
Child functioning
The dental clinical situation, with bidirectional interaction between the child
and the dental professional, is part of the mesosystem in the Ecological
Systems Theory. However, only a limited part of this interaction, namely the
child’s functional profile, was studied here, and data about the role of parents
or dental care givers are not included. It could be argued that, from an ethical
perspective, the adults should have to adapt to the child’s functional
limitations rather than the other way around, making child functioning the
most important factor to consider. As with oral health, this thesis did not find
that the medical diagnosis predicted the children’s functioning. In previously
mentioned studies, de Schipper et al also concluded that a child’s functioning
profile adds meaningful information beyond the mere diagnosis161,162,167. In
the calculation of functioning factors, the ICF-CY items from three chapters
from the Activities and Participation component had to be excluded,
‘Domestic life’, ‘Major life areas’ and ‘Community, social and civic life’. The
importance of these factors in relation to oral health and dental health care and
how this may have affected the results is unknown.
Child functioning and DGA
Child functioning was useful in predicting DGA, which is a fact already
known by most clinicians. Björck-Åkesson et al suggest child functioning as
an important basis to consider when planning treatment34. A biopsychosocial
approach using the ICF-CY, as opposed to the traditional classification by
medical diagnoses, is a way forward for a holistic view of the individual child
with disability31,32,168,169. Most children in this study had ID and those who had
experience of DGA had significantly more problems recorded for the body
function ‘Intellectual functions’, b117. This finding is supported by those of
Maeda et al and Petrovic et al16,59. Many children with major problems in
intellectual functions also experience problems in interpersonal interactions
and relationships, which was the functioning factor found to increase the odds
61
for children having an experience of DGA in this thesis. This could, in turn,
mean that the ICF-CY code ‘Intellectual functions’, b117, is a causative
indicator for having had dental GA, while the mechanism is the problem of
interaction with others.
It is understandable that children with problems in their interpersonal
interactions and relationships experience difficulties in the clinical dental
setting, where the child patient is urged to comply with dental treatment
performed by another person. One would expect that strategies to overcome
many of these interaction problems were used by the professionals working at
the specialist clinics involved in the study. The positive effects on interaction
of the clinical use of augmentative alternative communication (AAC), such as
pictures, pictograms and Talking Mats170-172, have been shown. Problems in
the functioning factor ‘Communication’ did not have a significant impact on
DGA in this thesis, which possibly supports the assumption that the clinicians
used alternative ways to communicate with children with disabilities. In the
Swedish setting, the use of pictures and manual sign communication has been
routine for many years, but Talking Mats, a method of facilitation for the
bidirectional dialogue between dental professional and child, had not been
introduced at the time of data collection. Although very important, these AAC
tools may not be sufficient in all clinical treatment need situations, making
DGA a reasonable outcome12. For some children, learning to accept visual
intraoral inspections and preventive measures, such as professional dental
cleaning and fluoride varnish, will be the ultimate goal, while other aspects of
dental treatment have to be performed with the support of sedation or GA to
ensure good quality care. DGA should not to be considered a failure by either
the dentist or the parent or patient, but instead one of the actions chosen, from
the pool of behaviour management strategies available, as the best solution for
the current clinical dilemma. Knowledge about, and the experience and
availability of, different treatment strategies and supportive techniques,
including communication tools, sedation or GA, is important to ensure that
good oral health and adequate, qualitative dental treatment is an equal
possibility for all children.
Two children in the large Swedish study group were identified as having
atypical functioning profiles concerning their experience of DGA, despite no
problems in interpersonal interactions and relationships and no or only mild
problems in intellectual functions. Dental anxiety in children is common, with
an estimated prevalence of around nine per cent. However, despite several
62
reports on dental anxiety in children with disabilities, a specific prevalence
has not been reported in this population96,173,177. Krekmanova and her co-
workers found that children with disabilities experienced more oral discomfort
and pain than children without disabilities178. They also found significant
differences between children with more severe ID and children with mild ID.
The body function ‘emotional functions’, b152, incorporates anxiety, but was
not specified in the ICF-CY Checklist as dental anxiety and, as such, dental
anxiety was not captured. Although 11% of the children in the large
international study had no medical conditions, but were referred because of
dental anxiety, ‘emotional functions’ was not among the three body functions
with the most frequently recorded problems. It is very important to recognise
and properly manage dental anxiety, regardless of whether it is based on the
child’s previous negative experiences or not. It would thus seem important
that the future ICF-CY core sets for oral health include dental anxiety.
Nevertheless, the finding is another example of how the child’s characteristic
influence care outcomes in the mesosystem.
A somewhat disturbing finding is that problems in the functioning factor
‘Mobility’ seemed to decrease the use of DGA in children with disabilities
and manifest dental caries in the international dental caries group studied. This
finding was on international group level, and not connected to a specific
country. It may be that children with problems with ‘Mobility’ had a higher
ASA3 classification and that GA for that reason was not used by choice or for
medical reasons. The possible manual restraint of a patient by holding him or
her down, which might be classified as physical abuse in the dental setting,
was not recorded. That this is what is reflected in the present result cannot be
confirmed, but the suspicion must be recognised. One must, however, bear in
mind that sedation in the dental clinical practice is not allowed in all countries,
leaving less choices when dental treatment is needed. Children treated with
the use of physical restraint as a management strategy in dental treatment,
were excluded for ethical reasons, but there are different views on what is in
the best interests of the child regarding the use of restraints121,179. The ethical
subject of physical restraints has been discussed and needs to be constantly
and recurrently raised180,181. From a child’s perspective, it is important to work
for resource allocation, both regarding the prevention of oral disease as well
as high quality dental treatment, for all children, with or without disabilities.
The experience of force and pain in dental treatment have been identified as
important factors in the development of dental phobia182. Also, all aspects of
63
DGA should be considered as a treatment chain, from the dental clinic to the
anaesthesia clinic. The context of this thesis did not go beyond the dental clinic
to analyse how the induction of GA was performed. Similarly to dental
treatment, induction of GA involves situations that may be difficult for the
child to understand and cooperate with, and the use of physical
restraint/immobilisation exists120,183. This highlights the importance of
communication and collaboration between the dental and medical
professionals in the best interests of the child.
Oral health care and the exosystem
Dental clinics, with regional and local variations in dental health care
strategies and facilities, belong in the exosystem of the Ecological Systems
Theory. They form the foundation for oral health care outcomes in the
mesosystem and the condition of oral health experienced by the child in the
microsystem. In turn, oral health care is dependent on laws, regulations and
insurance policies in the macrosystem.
In the Swedish regional context of the thesis, some aspects of preventive oral
health differ from other parts of the country, e.g., the automatic dental recalls
start earlier, and fissure sealing of all caries-free molars is part of the basic
preventive recommendation list. These recommendations apply to all children
and the effect on population level is favourably reflected in national dental
caries statistics78. In the regional Argentinian context, atraumatic restorative
treatment (ART) of dental caries is common, but it is rarely used in Sweden
and only partly in France. ART does not involve drilling and this less invasive
technique may have contributed to DGA being less common in Argentina and
France184-186. Regarding children with disabilities, there is, however, a
knowledge gap about both preventive measures and dental treatment
interventions in children with disabilities103. It is important that children with
disabilities receive dental health care based on science and proven experience
and that poorly proved compromises are avoided.
As well as oral health being an integral part of an individual’s general health,
dental health care should be considered an integral part of general health care.
However, despite the mouth being a body part, dental health care is most often
organised outside of the general health care system. To optimise care for
children with disabilities, interprofessional collaboration between medical and
dental health care is desirable187-199. Collaboration between different
64
organisations may be hierarchically driven, with formal contracts, but it may
also be more horizontally integrated through networking between individuals
who want to work together in order to provide better care, as described by
Axelsson & Bihari Axelsson190. It is likely that the collaboration between
dental specialists and child neurologists in the child and youth habilitation
services in the large Swedish study has increased the number of early referrals
to the paediatric dentistry clinic. The same goes for the collaboration that
resulted in the extended and more optimised use of GA sessions in favour of
these child patients. These two single and rather simple forms of
interprofessional collaboration seem to have enabled the early prevention as
well as early detection and treatment of oral disease, all important processes
in obtaining good oral health191,192. This way of working together not only
benefits the child, but also saves money and resources for society, i.e. by
optimising the use of GA sessions, the placement of fissure sealants, and lower
costs for restorative treatment and oral rehabilitation193,194. This example of
interprofessional collaboration is regional and is not standard in Sweden, or,
it seems, internationally. The fact that only two countries in the large
international study, France and Sweden, had children referred to their
specialist clinics without having a dental diagnosis imply that similar forms of
collaboration with medical doctors are not common; at least not in the
countries studied. This is also supported by the finding that in the international
dental caries study, only one French DGA session (and no Argentinian DGA
sessions) was combined with a medical intervention, while Sweden had many.
Oral health care organisation and the macrosystem
In the Ecological Systems Theory, environmental factors at the national and
societal levels, such as laws, social welfare policies and societal attitudes,
correspond to the macrosystem and may influence the dental clinic in the
exosystem, the interaction between dental professionals and the child patient
in the mesosystem, and ultimately the child with disabilities on the body level
in the microsystem.
This thesis involves children with disabilities from four different countries
with four different oral health care organisations and health insurance
regulations. Since the disability experienced by an individual is the result of
both intrinsic and extrinsic factors, it is not possible to know what the
international differences found in the analyses of items from the ICF-CY
components Body Functions, Body Structures and Activities and Participation
65
represent. The differences in dental caries experience between children in the
different countries are supported by findings in other studies and surveys and
are easier to relate to oral health organisation74,77,82,195-197. In Argentina, oral
health care for children is not centrally organised and although there are some
insurance-related efforts on the national level, they seem to have had a limited
impact on the situation for children with disabilities. In France, there is an
insurance system that aims to reduce the financial impact to some extent.
However, oral health care facilities for children with disabilities are
insufficient and the responsibility for seeing a dentist rests solely with the
patient/family. The latter phenomenon could further add to the explanation
why dental caries rates were comparably higher in France: the parents/carers
do not seek help until dental cavities are visible, or when they think that the
child has dental pain. In Ireland, children with disabilities are regularly seen
by a dentist and they also provide treatment; however, the PDS does not see
pre-school children. Sweden, meanwhile, has had centrally-run oral disease
prevention drives and oral health promotion for decades. In addition, there is
a dental insurance system reducing the influence of economy on oral health
care for children. All children are called to a dental clinic regularly and
although this is voluntary, the dentist is obliged to alert social services about
children who not show up frequently198. Although there are variations between
clinics in acting upon this, these children are viewed as being at risk for dental
neglect and child maltreatment25,199.
The international inequalities between children with disabilities could also be
seen in the international dental caries study group. Argentina had high
dmft/DMFT but few DGAs while it was the other way around for Sweden
with the most DGAs and the lowest dmft/DMFT. In France, N2O/O2 sedation
was frequently used but this option is not available for dentists in Argentina.
In addition, there were significant environmental differences between
countries, where a majority of the children/parents from Argentina reported
barriers in functions such as social security and health care. The decision to
perform DGA in a child with disabilities is, reasonably, based on various co-
existing factors that can be found in different ecological systems and many of
them are not studied in this thesis, i.e. socioeconomic status and attitudes to
DGA. Nevertheless, the findings illustrate that country context is most likely
the strongest factor concerning DGA in children with disabilities, since many
of the barriers may be compensated by the organisation and financing of oral
health care on the national level. Accessible, available and affordable DGA is
66
important for making oral health and oral health care as equal as possible for
all children.
Biopsychosocial approach
Introducing the biopsychosocial perspective as assessed by the ICF-CY in
paediatric dental research has made it possible to explore other aspects of oral
health and oral health care than those traditionally discussed. As an example,
ICF-CY classified data has in this thesis been used to construct functioning
profiles that are not based on diagnostic criteria. The ICF-CY classification
contains more than 1,600 different categories and it is impossible and
unfeasible to use this in clinical practice. The ICF-CY Checklist for oral health
contains 128 different items, which works well in research but in the clinic,
this is impractical. Björck-Åkesson et al found ICF-CY-based instruments
useful for documenting child characteristics and assessing functioning, but
that short lists are needed for implementation in daily work34. The WHO has
developed a series of methods needed to construct ICF and ICF-CY core sets
(short lists) for different diagnoses or health problems62,63. There is now an
ongoing process of constructing ICF-CY core sets, not for oral disease, but for
oral health, which will facilitate a biopsychosocial assessment and
classification as a complement to the medical/dental registrations that are
made when meeting and treating child patients200,201. Article I of this thesis is
the empirical, cross-sectional study, representing the clinician’s perspective,
of the preparatory phase in the core set process. These future core sets will be
more specific than the Oral Health Checklist, as well as, easier to use, and they
will make internal, national and international comparisons of biopsychosocial
oral health data possible. They could also serve for the biopsychosocial
evaluation of a specific oral health condition, as well as dental treatment
outcomes202. This means that evaluation will include not only the oral health
status of an individual but also the individual’s everyday life functioning and
environmental context.
There is criticism that can be put forward about the ICF and ICF-CY, some of
which has already been mentioned in the discussion of the methods section.
Apart from the ICF-CY classification being vast and complex, there are no
clear instructions on how to interpret the arrows between the different
components in the ICF framework as a model (Figure 1). The arrows are
bidirectional, indicating interactions between the components; but in contrast
to the Ecological Systems Theory, the ICF model is non-hierarchical, and it is
67
not obvious on which levels interactions occur. Also, the ICF model does not
incorporate time in the way that the Ecological Systems Theory does, with its
level “chronosystem”50. It is still not possible to classify Personal factors, that
comprise an important component of the biopsychosocial model203-205.
Personal factors include factors such as sex and age but also circumstances
concerning social background, upbringing and earlier experiences. Each
personal factor may influence the level of disability and added together they
are likely to have a significant impact206. In the introduction to the ICF-CY, it
is mentioned that personal factors are part of the biopsychosocial illustration
since they can affect interventions, and the WHO has the ambition of
including the classification of personal factors in the future36,204.
In 2015, the WHO Family of International Classifications network (WHO-
FIC) decided to start the process of merging the ICF-CY and ICF, as earlier
mentioned. The goal is to create one comprehensive ICF that covers all aspects
of functioning over a lifespan53. The two classifications share structure and
properties but it is important that the child developmental specific concepts
are not lost in the merger.
Comprehensive understanding
Children with disabilities comprise a vulnerable group and inequalities in care
are likely to affect them more than many other groups. They risk being
discriminated on at least two levels: they are children and they have
disabilities. Barriers and facilitators for obtaining good oral health and equal
access to oral health care can be found in all the ecological systems, e.g.,
functional limitations within the child, the attitudes of dental professionals,
the accessibility to dental clinics and financial reimbursement from national
health insurance agencies.
From both a children’s rights perspective and from the perspective of the
rights of people with disabilities, there is a moral and ethical obligation for
society to offer oral health care adapted to suit these children to ensure they
have an equivalent level of good oral health as the rest of the population. There
are well-known global differences in both oral health and in oral health care
for children with disabilities. To enable the best possible care, measures can
be directed at multiple systems, from the direct clinical situation with the child
68
to policy from governmental institutions. However, the prevention of
preventable oral disease, such as dental caries, gingivitis and periodontitis,
ought to be the gold standard for all children – and for a child with disabilities
it is crucial.
Once a child with disabilities has developed a dental treatment need, such as
manifest dental caries, it is less likely that the technical aspects of the
treatment will determine how treatment will be performed. The choice of
treatment modality will rather depend on the child’s functioning in the dental
setting; e.g., if dentists have more difficulties in performing chair-side dental
treatment for children with problems in their interpersonal interactions, they
will be more prone to use GA. This exemplifies a situation where the child
influences the dentist, dental clinic and local dental organisation, from the
microsystem through the mesosystem and outwards to the exosystem, as
expressed through the Ecological Systems Theory. In turn, the availability of
different management techniques needed to make the necessary treatment
measures possible, such as GA in the above example, depends on the current
dental and medical health organisation together with national laws and
regulations. Here, the influencing forces work from the outer macro- and
exosystems and go inwards through the mesosystem to the child in the
microsystem. Since financial issues are probable barriers for many families,
the existing (or non-existing) dental health insurance system may decide if the
choice of treatment, ‘objectively’ considered the best for the child and the
situation, will ultimately take place; which brings us back to the obvious
importance of keeping good oral health good in the first place.
69
Conclusions
Overall conclusions
By introducing the biopsychosocial perspective operationalised by the ICF-
CY, this thesis contributes a holistic view on oral health and specialist dental
health care in children with disabilities, over and above the medical and dental
parameters traditionally used. The holistic view is emphasized by placing the
results and influencing factors in the Ecological Systems Theory.
Microsystem
The medical diagnosis of a child’s condition was not related to child
functioning among Swedish children with disabilities; thus, the first basic
assumption of the thesis was correct. In Swedish children with complex
disabilities and good oral health, dental caries was not significantly correlated
with the child’s medical diagnosis or functioning, but indications that child
functioning and dental caries are related were found in a group of children
with disabilities and dental caries from Argentina, France and Sweden. This
is in line with the second basic assumption in this thesis.
Mesosystem
Children with disabilities and problems in their interpersonal interactions and
relationships were more likely to have had DGA, both in Sweden and
internationally. Problems with mobility made it less likely to have had the
experience of DGA in children with disabilities and manifest dental caries
from Argentina, France and Sweden. These findings confirm the third
assumption. Despite this, the dental caries burden was a stronger factor for a
DGA experience.
Exosystem
Swedish children with disabilities and without dental caries experience were
referred to a paediatric dental specialist at an earlier age than children with
caries experience, indicating that early referrals are beneficial for oral health.
DGA is common for Swedish children with complex disabilities. Combining
dental treatment and medical interventions during the same GA session is a
good use of individual and societal resources and enables children with
disabilities to receive qualitative dental health care that could not be
70
performed in a chair-side setting. Thus, DGA is one important factor in
ensuring that children with complex disabilities have the possibility of
achieving the equivalent good oral health as other children.
Macrosystem
Children with different health statuses from different countries share many
functional and environmental aspects, important for oral health and dental
health care, in addition to certain differences. Supporting the fourth
assumption, environmental factors influencing dental health care – i.e., dental
health organisation and country context – seem to matter most when
determining DGA for children with disabilities and manifest dental caries. The
environmental context in which the studies are performed is incorporated in a
biopsychosocial perspective, and this factor has an important influence.
Clinical Implications
The results of this thesis show that, in addition to medical diagnoses,
biopsychosocial information including child functioning, is valuable when
planning oral health care, both on the organisational and individual levels. In
the dental situations investigated, interpersonal interactions and relationships
appeared to be the most significant aspect of functioning, followed by
mobility. In other situations, other functioning factors may be more relevant.
All dental specialists who work with children with disabilities should have a
long-term perspective and aim to create as favourable conditions as possible
for the children to have good oral health and to be comfortable in the dental
setting throughout their lives. To accomplish this, a biopsychosocial approach
is indispensable.
This thesis has illustrated the advantages of collaboration between
professional specialists in paediatric dentistry and child neurologists and
anaesthesiologists. To practically implement the pure logic of oral health and
dental health care as natural parts of a child’s general health and general health
care, an increase in interprofessional collaboration is needed. In Sweden, a
suggestion would be to incorporate dental hygienists who are particularly
experienced in working with children with disabilities into the child and youth
habilitation services. Ultimately, it is the child and family who decide what
71
professionals they want included in the habilitation team, but currently the
option of a dental hygienist is not regularly offered.
To identify biopsychosocial factors using the ICF-CY contributes, in a
structured way, to the capture of a holistic perspective and to the assessment
of child functioning in relation to oral health and dental health care. In this
thesis, ICF-CY items were used for cross-sectional descriptions and
comparisons, but to use the ICF-CY to collect biopsychosocial data before
dental treatment and to follow up on the outcome afterwards, would also be
very fruitful, both in the clinic itself as well as in clinical research. Here, the
future ICF-CY core sets for oral health will make structured assessment of
functioning more feasible, but there is always the possibility of choosing the
specific ICF-CY items decided relevant for the occasion. Since most clinical
interventions within paediatric dentistry strive to maintain or improve oral
function, it would be natural to widen the perspective to include, not only
biological, but also psychosocial factors in the treatment results.
Advocates with the aim of achieving equal oral health and dental health care
in children with disabilities, as for other children, should act for improvement
on several levels: individual, clinical, organisational and legislative. The
factors found in the different ecological systems in this thesis can work as
suggestions of where to start. Some improvements are easier to implement
than others, such as the increased use of AAC among dental personnel or
increased interprofessional collaboration around children with disabilities;
these are both examples of clinical improvements that are suitably evaluated
using the ICF-CY.
Future Research
This thesis aspired to illustrate oral health and dental health care in children
with disabilities from a biopsychosocial perspective, developing a holistic
picture. This has been done with a child perspective in mind, but mainly from
the view of the dental professional. The next step would be to include the
child’s perspective207. There are examples, both in medical and dental
research, where children with disabilities have been given a voice through
focus groups208,209. The transcripts from focus group discussions with children
with disabilities and their families, around specific oral health or dental health
72
care issues, could be linked to ICF-CY codes and in this way, could add the
important child’s perspective dimension to the biopsychosocial assessment210.
The patients’ perspective through qualitative research is actually another of
the four preliminary studies in the ICF and ICF-CY core set process63.
Another offspring to this study could be to investigate the current interaction
and collaboration between dental and anaesthesia clinics in different areas of
Sweden. This could be done easily by adding questions in the existing
recurrent surveys that the Swedish Society for Paediatric Dentistry already
undertakes17. The assumption is that it differs widely between regions and a
follow-up intervention could comprise strategies to improve interprofessional
collaboration. The intervention should preferably be designed with a
biopsychosocial approach.
Knowledge about the effect of dental treatment in children with disabilities is
lacking in dental research103. A biopsychosocial approach to evaluate dental
treatment could be performed by using the ICF-CY to identify different
functioning aspects, evaluated before and after dental intervention. This would
certainly add valuable and broad knowledge about dental treatment outcomes
in children with disabilities.
A suggestion for the shape of one such study, investigating the effects of
prevention or dental treatment in children with disabilities, would be to
evaluate different AAC techniques using a biopsychosocial ICF-CY approach.
Measures could be taken prospectively, before, during and after the
application of the techniques. In this way, it might be possible to answer the
question of what AAC techniques and strategies are most suitable for dental
professionals to use to increase the cooperation of their child patients.
Although such studies already exist, none yet published has applied a
biopsychosocial viewpoint, or been operationalised by ICF or ICF-CY211.
It would be interesting to perform a longitudinal study with follow-up of the
children with and without experience of DGA from article III of this thesis.
Does early experience of DGA mean continued DGAs in the future - or the
opposite? Will repeated DGA still be related to difficulties in interpersonal
interactions and relationships?
The transition from childhood to adult life involves different and sometimes
difficult changes in any young individual’s life, and possibly even more so for
many persons with disabilities212,213. Some of these changes may come with
73
an increased risk for oral health problems, such as a shift in responsibility for
oral hygiene procedures as well as what and when to eat. The parallel
transition from paediatric dental health care to adult dental care may also have
an impact, when dental visits are made increasingly on the individual’s
initiative. Klingberg et al presented barriers in dental health care on different
levels for young individuals in a study based on grounded theory109. With the
same target group, a biopsychosocial assessment before leaving paediatric
dental health care and a follow-up a few years after, would add information
on where improvements could be made. The impact of such improvements
could be further evaluated by a biopsychosocial approach.
74
Summary in Swedish/
Svensk sammanfattning
Introduktion
Att bibehålla en god oral hälsa är viktigt för alla, men för barn med
funktionsnedsättning kan det vara speciellt viktigt. Dålig oral hälsa kan
förvärra en funktionsnedsättning, precis som en funktionsnedsättning kan öka
risken för att få en dålig oral hälsa. Ett barns intellektuella kapacitet och
förmåga att samarbeta till tandvård kan samtidigt påverka på vilket sätt
tandvård utförs. Ett barns medicinska diagnos är nödvändig att veta för att
förstå orsaker, leta kunskap om specifika symptom och bedöma hur framtiden
kommer att se ut. Den ger emellertid inte tillräcklig information om hur barnet
kommer att fungera i tandvården. Det finns därför ett behov att komplettera
informationen om den medicinska diagnosen med information om hur barnet
fungerar i olika situationer för att få ett bredare perspektiv på oral hälsa och
tandvårdsomhändertagande.
Traditionellt brukar oral hälsa presenteras från ett medicinskt perspektiv, men
även här finns det behov av helhetssyn, ett så kallat biopsykosocialt
perspektiv, på barn med funktionsnedsättning och deras oral hälsa.
Världshälsoorganisationen (WHO) har tagit fram en internationell
klassifikation för funktionstillstånd, funktionshinder och hälsa, barn- och
ungdomsversion (ICF-CY), som gör det möjligt att klassificera
konsekvenserna av ett hälsotillstånd på ett strukturerat och kommunicerbart
sätt. Det övergripande syftet med detta avhandlingsarbete har varit att, med
hjälp av ICF-CY, undersöka hur biopsykosociala faktorer förhåller sig till oral
hälsa och specialisttandvård för barn med funktionsnedsättning, i Sverige och
internationellt. Ett speciellt fokus har legat på tandbehandling under narkos.
Material och metoder
Avhandlingen är en beskrivande och jämförande tvärsnittsstudie av barn upp
till 16 år gamla, som remitterats till specialisttandvård. Tre grupper har ingått
75
i studien: en stor internationell grupp med 218 barn från Argentina, Frankrike,
Irland och Sverige; en stor svensk grupp med 99 barn med omfattande
funktionsnedsättning; samt en internationell kariesgrupp med 83 barn med
funktionsnedsättning och manifest karies från Argentina, Frankrike och
Sverige.
En checklista för oral hälsa, baserad på ICF-CY, fylldes i genom intervjuer
med barnen och deras föräldrar eller annan medföljare. Kompletterande
information om barnets orala hälsa och utförd tandvård inhämtades från
tandvårds- och medicinska journaler. Biopsykosociala faktorer från
checklistan jämfördes mellan länder. Med hjälp av bedömning av barnens
genomförande av olika aktiviteter från ICF-CY konstruerades
funktionsfaktorer, som sedan användes för att bygga individuella
funktionsprofiler för varje barn. Barn med liknande funktionsprofiler
sorterades i grupper för att kunna relatera funktion till medicinsk diagnos och
karies. Sannolikheten för att barn med problem i vissa funktionsfaktorer skulle
ha fått tandbehandling under narkos kunde också beräknas. I den
internationella kariesgruppen fanns även karies och i vilket land barnen bodde
i med i dessa analyser.
Resultat
ICF-CY-checklistan för oral hälsa identifierade biopsykosociala faktorer som
dels var gemensamma och dels som skilde sig signifikant mellan barn från
Argentina, Frankrike, Irland och Sverige. Medicinska diagnoser kunde inte
förutsäga vare sig karieserfarenhet eller funktionsprofiler hos svenska barn
med omfattande funktionsnedsättning och god oral hälsa. Inte heller kunde en
signifikant relation mellan funktionsprofiler eller erfarenhet av karies
fastställas i denna grupp. Däremot fanns ett samband mellan karieserfarenhet
och problem i funktionsfaktorn ’Mellanmänskliga interaktioner och
relationer’ i den internationella kariesgruppen. Kariesfria barn med
funktionsnedsättning hade remitterats till specialisttandvård för barn när de
var signifikant yngre än barn med karieserfarenhet i den stora svenska
studiegruppen. I denna grupp var också tandbehandling under narkos vanligt,
liksom att samma narkostillfälle var samordnat med både medicinska ingrepp
och tandbehandling. Barn med erfarenhet av tandbehandling under narkos
76
hade större problem med intellektuella funktioner än de som inte sövts för
tandbehandling. Problem med ’Mellanmänskliga interaktioner och relationer’
ökade sannolikheten för att barnet hade fått tandbehandling under narkos,
medan problem i funktionsfaktorn ’Förflyttning’ minskade denna sannolikhet.
I den internationella kariesgruppen hade de barn som fått tandbehandling
under narkos mer karies än de som inte sövts. Detta resultat var på gruppnivå
men bland de svenska barnen med funktionsnedsättning och manifest karies
fanns inte denna skillnad. I den internationella kariesgruppen var det även
signifikanta skillnader mellan barnen från de olika länderna avseende
mängden karies per barn, antal tandbehandlingar under narkos samt hindrande
faktorer i omgivningen, som till exempel hälsovård och allmänna sociala
stödinsatser.
Slutsatser
Genom att använda ICF-CY har det gått att bidra till en helhetssyn på oral
hälsa och tandvård för barn med behov av specialistomhändertagande.
Förutom vissa skillnader, så har barn med olika hälsotillstånd från olika länder
många biopsykosociala faktorer gemensamt, både i funktion och omgivning,
faktorer som har betydelse för oral hälsa och tandvård. Tidig remiss till
specialisttandvård verkar vara gynnsamt för den orala hälsan hos barn med
funktionsnedsättningar. Den medicinska diagnosen räcker inte för att bedöma
ett barns orala hälsa eller fungerande i tandvården. Däremot har barnets
fungerande en betydande inverkan på beslutet om barnet ska sövas för
tandbehandling eller inte. Hos barn med funktionsnedsättning och karies
verkar barnets fungerande också vara kopplat till hur många kariesskador
barnet har. Den totala kariesbelastningen verkar däremot ha större betydelse
för tandbehandling under narkos än vad barnets fungerande har, men det mest
avgörande är i vilket land man bor och hur tandvården där är organiserad. Att
samordna medicinsk behandling med tandbehandling vid samma
sövningstillfälle är ett bra sätt att använda resurser, både för individ och
samhälle. Möjligheten att kunna söva en del barn för tandbehandling är
mycket viktigt för att kunna erbjuda barn med omfattande
funktionsnedsättningar samma möjligheter till tandvård och god oral hälsa
som andra barn.
77
Acknowledgements
A warm and sincere thank you to all the children and parents who gave their
valuable time to participate in the studies of this thesis.
Then, of course, I want to send a BIG thanks to my supervisors, who supported
me during this journey. So, thanks to Mats Granlund, my main supervisor,
who made me a member of the CHILD research group and patiently guided
me into the biopsychosocial world and the life of ecological systems. Thank
you for being there and being engaged. Thanks also to my co-supervisor and
very wise ‘dental support’, Gunilla Klingberg, always reassuring and who
knows so much more. And thanks to my co-supervisor, Anne Lillvist, who
pedagogically helped me understand clusters and functioning factors.
Special thanks also to my co-author, Denise Faulks, who without hesitation
invited me to join her international ICF-CY team. It has been a fantastic
experience on so many different levels. Our collaboration just shows how
conference coffee breaks come with valuable side-effects! And you even read
my almost-ready manuscript for this thesis. A special thank you also to my
international co-authors Caoimhin Macgiolla Phadraig, Gabriela Scagnet,
Caroline Eschevins, Martine Hennequin and, last but not least, Gustavo
Molina, who, in addition to this international group’s joint efforts in paper I,
also generously shared valuable data needed for paper IV.
I have many colleagues at “OI”, the Institute for Postgraduate Dental
Education in Jönköping, my working place since many years, to thank for
supporting me during my doctoral studies. Alas, I cannot mention you all. At
the National Oral Disability Centre for rare disorders, I want to express a
special thank you to Birgitta Bergendal, for believing in me and for
encouraging me to take this project on, to Annica Krogell, for keeping me on
track during my absence (or absent-mindedness) and to Pernilla Holmberg,
for holding positions when I have been absorbed by writing. At the department
for paediatric dentistry, thank you, Elisabeth Magnusson, you have kept hold
of me and my records, not only for this project, but for almost 25 years now.
What would I have done without you? Helén Janson, thank you for helping
me with the finishing touches of this book. I had no idea that the art of
headings was so complicated! To late dental hygienist Kerstin Håkansson, you
were named as a significant ‘facilitator’ by many of the children and parents
78
who participated in this study. You are missed. Many thanks to the rest of the
gang for your positive encouragement and effective help in recruiting study
participants. You are the best. Then, it is not possible to thank the paediatric
dentistry department in Jönköping without mentioning Göran Koch and Anna-
Lena Hallonsten, my supervisors and role models during my postgraduate
dental education, who laid the foundation for my interest in high-quality dental
health care for children with disabilities.
Thanks to Bengt Fridlund, Kajsa Linnarsson and my fellow doctoral students
at the Research School of Health and Welfare at Jönköping University. It has
been a truly inspirational environment to work in. And, Ingalill Gimbler
Berglund, how fortunate I have been to have had my desk next to yours (and
so close to your chocolate supply!). Thanks also to the CHILD research group,
with a special thank you to Margareta Adolfsson for giving invaluable advice
to this ICF-CY rookie.
For financial support, I thank Futurum, the Academy for Health and Care in
Region Jönköping County. Thank you also to director Agnetha Bartoll and the
Public Dental Health Care in the Region Jönköping County for giving me the
opportunity to see this work through.
Finally, to my very own and beloved ‘microsystem’: Ola, Axel, Anja and
Malte. I am nothing without you - thank you for being ♥.
79
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Appendix
Appendix 1
Appendix 2
GUIDELINES FOR THE USE OF THE MODIFIED ICF CHECKLIST – SPECIAL
CARE DENTISTRY CHILDREN AND YOUTH VERSION
1. A child or youth is an individual under 16 years of age on the day of data collection.
2. This is a checklist of major categories of the International Classification of Functioning,
Disability and Oral Health Children’s version (ICF-Children) of the World Health
Organisation, modified for use in Special Care Dentistry. The ICF Checklist is a
practical tool to elicit and record information on the functioning and disability of an
individual. This information can be summarised for case records (for example, in
clinical practice or social work).
3. This version is for use by a clinician, health or social care professional.
4. The checklist should be used along with the ICF-Children full or short version (ICF,
WHO, 2001). The raters should familiarise themselves with the ICF by attending a brief
educational programme or self-taught curriculum.
5. All information from written records, primary respondents, other informants and direct
observation can be used to fill in the checklist. Please record all sources of information
used on the first page.
6. Parts 1 to 3 should be filled in by writing the qualifier code against each of the function,
structure, activity and participation term that shows some problem for the case being
evaluated. Appropriate codes for the qualifiers are given on the relevant pages.
7. Comments can be made regarding any information that can serve as the additional
qualifier or that is thought to be significant for the case being evaluated.
8. Part 4 (Environment) has both negative (barrier) and positive (facilitator) qualifier
codes. For all positive qualifier codes, please use a plus (+) sign before the code.
9. The categories given in the checklist have been selected from the ICF and are not
exhaustive. If you need to use a category that you do not find here use the space at the
end of each dimension to record these.
Appendix 2
MODIFIED ICF CHECKLIST – SPECIAL CARE DENTISTRY
H1. Data Source Please circle the information used for compiling this report:
1) written records 2) primary respondent 3) parent or guardian 4) another informant
5) direct observation
H2. Date of data collection / /
H3. Investigator number
DEMOGRAPHIC INFORMATION
A1. Family Name (3 initials)
First Name (2 initials)
A2. Sex female male
A3. Date of Birth / /
A4. Residence Home Institution Hospital
A5. Current education 1 Preschool child care
2 Mainstream schooling 4 Home
3 Special schooling 5 Other
A6. Medical diagnosis
No medical condition give ICD codes
ICD Code
ICD Code
ICD Code
Unspecified or undiagnosed health condition
Please complete appendix 1 “ICD Main categories” if diagnosis unclear.
A7. Dental diagnosis
No dental condition give ICD-DA codes
ICD-DA Code
ICD-DA Code
ICD-DA Code
Unspecified or undiagnosed oral health condition
Please complete appendix 2 “ICD-DA Main categories” if diagnosis unclear.
BRIEF HEALTH INFORMATION
Please circle the correct reply and complete details where necessary:
B1. Data Source
1) Self report 2) Parent or carer report 3) Clinician administered
B2. Height cm or feet inches
B3. Weight kg or stones pounds
Appendix 2
B4. How would you rate the child’s physical health in the past month?
Very good Good Moderate Bad Very Bad
B5. How would you rate the child’s mental and emotional health in the past month?
Very good Good Moderate Bad Very Bad
B6. How would you rate the child’s overall oral health?
Excellent Very Good Good Moderate Poor Very Poor
B7. Does the child currently have any disease(s) or disorder(s)?
No Yes: please specify
B8. Were there any problems at birth?
No Yes: please specify
B9. Has the child ever been hospitalised?
No Yes: give reason
for how long? days
B10. Is the child taking any medication? (either prescribed or over the counter)
No Yes: please specify
B11. Does the child have any significant injuries?
No Yes: please specify
B12. Does the child use any assistive devices such as glasses, hearing aid, wheelchair, communication
board etc.?
No Yes: please specify
B13. Does the child have assistance from anybody with self-care or daily activities?
No Yes: please specify
B14. Is the child receiving any kind of treatment for his or her health?
No Yes: please specify
B15. Additional significant information on the child’s past or present health?
B16. IN THE PAST MONTH has the child cut back on his or her usual activities because of his or
her health condition?
No Yes: please specify
B17. IN THE PAST MONTH has the child been totally unable to carry out his or her usual
activities because of his or her health condition?
No Yes: please specify
Appendix 2
PART 1: BODY FUNCTIONS
Body Functions are the physiological functions of body systems.
Impairments are problems in body function as a significant deviation, loss or delay.
Qualifiers: Extent of impairment
ITEMS RELATING DIRECTLY TO THE ORAL SPHERE
Body Function Qualifier
b250 Does _ _ have any problems tasting foods? 0 1 2 3 4 8 9
b510 Does _ _ have any problems eating? 0 1 2 3 4 8 9
b5100 Does have any problems sucking? 0 1 2 3 4 8 9
b5101 Does have any problems biting (front teeth)? 0 1 2 3 4 8 9
b5102 Does have any problems chewing (back teeth)? 0 1 2 3 4 8 9
b5103 Does have any problems manipulating food in the mouth? 0 1 2 3 4 8 9
b5104 Does have any problems salivating? 0 1 2 3 4 8 9
b5105 Does have any problems swallowing? 0 1 2 3 4 8 9
ITEMS RELATING DIRECTLY TO FUNCTION HAVING A DIRECT OR INDIRECT
INFLUENCE ON ORAL HEALTH
Body Function Qualifier
b110 Does _ _ have any problems being alert and awake? 0 1 2 3 4 8 9
b114 Does _ _ have any problems with orientation (time, place, person)? 0 1 2 3 4 8 9
b117 Does _ _ have any intellectual problems? (retardation, dementia) 0 1 2 3 4 8 9
b122 Does _ _ have any problems with developing interpersonal skills? 0 1 2 3 4 8 9
b130 Does _ _ have any problems with energy and drive? 0 1 2 3 4 8 9
b140 Does _ _ have any problems paying attention to something? 0 1 2 3 4 8 9
b144 Does _ _ have any problems remembering or recalling something? 0 1 2 3 4 8 9
b147 Does _ _ have any problems controlling movements or emotions? 0 1 2 3 4 8 9
0 No impairment means the person has no problem
1 Mild impairment means a problem that is present less than 25% of the time, with an intensity which is
tolerable and which happens rarely over the last 30 days
2 Moderate impairment means that a problem is present less than 50% of the time, with an intensity which
interferes in day to day life and which happens occasionally over the last 30 days
3 Severe impairment means that a problem is present more than 50% of the time, with an intensity which
partially disrupts day to day life and which happens frequently over the last 30 days
4 Complete impairment means that a problem is present over 95% of the time, with an intensity that totally
disrupts day to day life and happens every day over the last 30 days.
8 Not specified means there is insufficient information to specify the severity of the impairment
9 Not applicable means it is inappropriate (e.g. menstruation functions for males)
Appendix 2
b152 Does _ _ have any problems feeling appropriate emotion? 0 1 2 3 4 8 9
b156 Does _ _ have any problems perceiving sounds, shapes, smells etc? 0 1 2 3 4 8 9
b164 Does _ _ have any problems with abstract thinking and complex
problem solving?
0 1 2 3 4 8 9
b167 Does _ _ have any problems recognising and using language? 0 1 2 3 4 8 9
b210 Does _ _ have any problems seeing? 0 1 2 3 4 8 9
b230 Does _ _ have any problems hearing? 0 1 2 3 4 8 9
b255 Does _ _ have any problems of smell? 0 1 2 3 4 8 9
b260 Does _ _ have any problems sensing the relative position of body
parts?
0 1 2 3 4 8 9
b265 Does _ _ have any problems of touch? 0 1 2 3 4 8 9
b270 Does _ _ have any problems sensing temperature, vibration, pressure,
noxious stimuli…?
0 1 2 3 4 8 9
b280 Does _ _ have any problems sensing pain? 0 1 2 3 4 8 9
b310 Does _ _ have any problems in voice production? 0 1 2 3 4 8 9
b410 Does _ _ have any problems with heart function? 0 1 2 3 4 8 9
b430 Does _ _ have any problems with blood function? 0 1 2 3 4 8 9
b435 Does _ _ have any problems with immunity (allergies etc,)? 0 1 2 3 4 8 9
b440 Does _ _ have any problems breathing? 0 1 2 3 4 8 9
b450 Does _ _ have any problems coughing, sneezing or yawning? 0 1 2 3 4 8 9
b515 Does _ _ have any problems digesting food? 0 1 2 3 4 8 9
b540 Does _ _ have any problems assimilating food (General metabolic
functions)?
0 1 2 3 4 8 9
b710 Does _ _ have any problems with joint mobility? 0 1 2 3 4 8 9
b730 Does _ _ have any problems with muscle power? 0 1 2 3 4 8 9
b735 Does _ _ have any problems with muscle tone? 0 1 2 3 4 8 9
b760 Does _ _ have any problems coordinating voluntary movements? 0 1 2 3 4 8 9
b765 Does _ _ have any problems controlling involuntary movements? 0 1 2 3 4 8 9
b810 Does _ _ have any problems of the skin? 0 1 2 3 4 8 9
ANY OTHER BODY FUNCTIONS
0 1 2 3 4 8 9
0 1 2 3 4 8 9
Appendix 2
PART 2: BODY STRUCTURES
Body Structures are anatomical parts of the body such as organs, limbs and their components.
Impairments are problems in structure as a significant deviation or loss.
First qualifier: Extent of impairment Second qualifier: Nature of change
0 No impairment means the person has no problem
1 Mild impairment means a problem is present less than
25% of the time, with an intensity which is tolerable and
which happens rarely over the last 30 days
2 Moderate impairment means that a problem is present
less than 50% of the time, with an intensity which
interferes in day-to-day life and which happens
occasionally over the last 30 days
3 Severe impairment means that a problem is present more
than 50% of the time, with an intensity which partially
disrupts day to day life and which happens frequently over
the last 30 days
4 Complete impairment means that a problem is present
over 95% of the time, with an intensity that totally disrupts
day to day life and happens every day over the last 30 days
8 Not specified means that there is insufficient information
to specify the severity of the impairment
9 Not applicable means it is inappropriate (e.g.
menstruation functions for males)
0 No change in structure
1 Total absence
2 Partial absence
3 Additional part
4 Aberrant dimensions
5 Discontinuity
6 Deviating position
7 Qualitative changes in structure, including
accumulation of fluid
8 Not specified
9 Not applicable
ITEMS RELATING DIRECTLY TO THE ORAL SPHERE
Body Structure First Qualifier Second qualifier
s320 Structure of the mouth 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s3200 Teeth 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s3201 Gums 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s3202 Palate 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s3203 Tongue 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s3204 Lip 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s330 Structure of the pharynx 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s510 Structure of salivary glands 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
Appendix 2
ITEMS RELATING DIRECTLY TO FUNCTION HAVING A DIRECT OR INDIRECT
INFLUENCE ON ORAL HEALTH
Body Structure First Qualifier Second qualifier
s110 Brain 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s1106 Cranial nerves 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s120 Spinal cord and peripheral nerves 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s2 Eye, ear and related structures 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s310 Nose 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s340 Larynx 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s410 Cardiovascular system 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s430 Respiratory system 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s520 Oesophagus 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s710 Head and neck region 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s720 Shoulder region 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s730 Upper extremity 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s740 Pelvic region 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s750 Lower extremity 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s760 Trunk 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
s8 Structures of skin 0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
ANY OTHER BODY STRUCTURES
0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
0 1 2 3 4 8 9 0 1 2 3 4 5 6 7 8 9
PART 3: ACTIVITY AND PARTICIPATION
Activity limitations and participation restrictions
Activity is the execution of a task or action by an individual.
Activity limitations are difficulties an individual may have in executing activities. Participation
is involvement in a life situation.
Participation restrictions are problems an individual may have in involvement in life
situations.
The performance qualifier indicates the extent of participation restriction by describing the
person’s actual performance of a task or action in his or her current environment. Because the
current environment brings in the societal context, performance can also be understood as
“involvement in a life situation” or “the lived experience” of people in the actual context in which
they live. This context includes the environmental factors – all aspects of the physical, social and
attitudinal world that can be coded using the Environmental codes. The performance qualifier
measures the difficulty the respondent experiences in doing things, assuming they want to do them.
Appendix 2
The capacity qualifier indicates the extent of activity limitation by describing the person’s
ability to execute a task or an action. The capacity qualifier focuses on limitations that are
inherent or intrinsic features of the person themselves. These limitations should be direct
manifestations of the respondent’s health state, without assistance. By assistance we mean
the help of another person, or assistance provided by an adapted or specially designed tool or
vehicle, or any form of environmental modification to a room, home, workplace etc. The level
of capacity should be judged relative to that normally expected of the person, or the person’s
capacity before they acquired their health condition.
General guidelines for participation and activities.
The following probes are proposed as a guide to help the examiner when interviewing the
respondent about problems in functioning and life activities, in terms of the distinction between
capacity and performance. Take into account all personal information known about the
respondent and ask any additional probes as necessary. Probes should be rephrased as open-
ended questions if necessary to elicit greater information.
Under each domain there are two kinds of probes:
The first probe tries to get the respondent to focus on his or her capacity to do a task or action,
and in particular to focus on limitations in capacity that are inherent or intrinsic features of
the person themselves. These limitations should be direct manifestations of the respondent’s
health state without assistance. By assistance we mean the help of another person, or assistance
provided by an adapted or specially designed tool or vehicle, or any form of environmental
modification to a room, home, workplace and so on. The level of capacity should be judged
relative to that normally expected of the person, or the person’s capacity before they acquired
their health condition.
The second probe focuses on the respondent’s actual performance of a task or action in the
person’s actual situation or surroundings, and elicits information about the effects of
environmental barriers or facilitators. It is important to emphasise that you are only interested in
the extent of difficulty the respondent has in doing things assuming that they want to do them.
Not doing something is irrelevant if the person chooses not to do it.
All items are to be completed in terms of age-appropriate performance and capacity.
Any item deemed non-age appropriate (e.g. preparation of meals for children < 12 years
of age) should be scored ‘9 – Not applicable’.
Example: Self Care
(Capacity)
1) In your present state of health, how much difficulty do you have washing yourself without
assistance?
2) How does this compare with someone, just like yourself only without your health
condition?
(Performance)
1) In your own home, how much of a problem do you actually have washing yourself?
2) Is this problem made worse, or better, by the way your home is set up or the specially
adapted tools that you use?
3) Is your capacity to wash yourself without assistance more or less than what you actually
do in your present surroundings?
Appendix 2 First Qualifier: Performance in current
environment
Extent of performance restriction
Second Qualifier: Capacity without
assistance
Extent of activity limitation
0 No difficulty means the person has no problem.
1 Mild difficulty means a problem that is present less than 25% of the time, with an intensity which is tolerable
and which happens rarely over the last 30 days.
2 Moderate difficulty means that a problem is present less than 50% of the time, with an intensity which
interferes in day to day life and which happens occasionally over the last 30 days.
3 Severe difficulty means that a problem is present more than 50% of the time, with an intensity which partially
disrupts day to day life and which happens frequently over the last 30 days.
4 Complete difficulty means that a problem is present over 95% of the time, with an intensity that totally
disrupts day to day life and happens every day over the last 30 days.
8 Not specified means there is insufficient information to specify the severity of the difficulty.
9 Not applicable means it is inappropriate (e.g. menstruation functions for males) or inappropriate for age.
ITEMS RELATING DIRECTLY TO FUNCTION HAVING A DIRECT OR INDIRECT
INFLUENCE ON ORAL HEALTH
Activities and participation Performance Qualifier Capacity Qualifier
d110 Does _ _ have any problems watching eg TV? 0 1 2 3 4 8 9 0 1 2 3 4 8 9
d115 Does _ _ have any problems listening? 0 1 2 3 4 8 9 0 1 2 3 4 8 9
d120 Does _ _ have any problems with purposeful
sensing (mouthing, touching, smelling)?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d131 Does _ _ have any problems learning by play? 0 1 2 3 4 8 9 0 1 2 3 4 8 9
d130 Does _ _ have any problems mimicking or
copying?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d155 Does _ _ have any problems acquiring skills? 0 1 2 3 4 8 9 0 1 2 3 4 8 9
d175 Does _ have any problems solving problems? 0 1 2 3 4 8 9 0 1 2 3 4 8 9
d177 Does _ _have any problems making decisions? 0 1 2 3 4 8 9 0 1 2 3 4 8 9
d210 Does _ _ have any problems undertaking a
single task or responding to a single
command?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d220 Does have any problems undertaking
multiple tasks or responding to multiple
commands?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d230 Does have any problems carrying out a
daily routine
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d235 Does _ have any problems managing his or
her behaviour?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d240 Does _ _ have any problems handling stress
and other psychological demands?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d310 Does _ _ have any problems understanding
spoken messages?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
Appendix 2
Performance Qualifier Capacity Qualifier
d315 Does _ _ have any problems understanding
non-verbal messages?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d330 Does _ _ have any problems speaking? 0 1 2 3 4 8 9 0 1 2 3 4 8 9
d331 Does _ _ have any problems with preverbal
vocalisation? (age appropriate)
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d335 Does _ _ have any problems producing non-
verbal messages?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d410 Does _ have any problems changing basic
body position?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d415 Does have any problems maintaining a
body position?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d420 Does _ _ have any problems transferring him
or herself?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d430 Does _ _ have any problems lifting and
carrying objects?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d440 Does _ _ have any problems with fine hand
use (picking up, grasping)?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d445 Does _ _ have any problems with hand and
arm use?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d510 Does _ _ have any problems washing him
or
herself? (bathing, drying, washing hands etc)
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d520 Does _ _ have any problems caring for
body
parts (brushing teeth, shaving, grooming etc)?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d550 Does _ _ have any problems eating? 0 1 2 3 4 8 9 0 1 2 3 4 8 9
d560 Does _ _ have any problems drinking? 0 1 2 3 4 8 9 0 1 2 3 4 8 9
d570 Does _ _ have any problems looking after
his
or her health (diet, exercise etc)?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d6 Domestic life
d620 Does _ _ have any problems acquiring
goods
and services (shopping, attending
appointments
etc)?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d630 Does _ _ have any problems preparing
meals?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
Appendix 2
Performance Qualifier Capacity Qualifier
d710 Does _ _ have any problems interacting with
people appropriately?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d720 Does _ _ have any problems in forming and
keeping social relationships?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d730 Does _ _ have any problems relating with
strangers?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d740 Does _ _ have any problems with formal
relationships?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d810 – 839 Does have any problems
participating in education
programmes?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d817 Does _ _ have any problems participating in
school education?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
d9 Community life
Does have any problems participating in
community life (neighbourhood, clubs, activities)?
0 1 2 3 4 8 9 0 1 2 3 4 8 9
ANY OTHER ACTIVITIES OR
PARTICIPATION
0 1 2 3 4 8 9 0 1 2 3 4 8 9
0 1 2 3 4 8 9 0 1 2 3 4 8 9
PART 4: ENVIRONMENTAL FACTORS
Environmental factors make up the physical, social and attitudinal environment in which
people live and conduct their lives.
Qualifier in environment: 0 No barriers 0 No facilitator
Barriers or facilitators 1 Mild barriers +1 Mild facilitators
2 Moderate barriers +2 Moderate facilitators
3 Severe barriers +3 Substantial facilitators
4 Complete barriers +4 Complete facilitators
Appendix 2
ITEMS RELATING TO ENVIRONMENTAL FACTORS HAVING A DIRECT OR INDIRECT
INFLUENCE ON ORAL HEALTH
Environmental factor Qualifier
Barrier or facilitator
e1 Products and technology
e1100 Is appropriate food available for _? 4 3 2 1 0 +1 +2 +3 +4
e1100 Are appropriate drugs available for _? 4 3 2 1 0 +1 +2 +3 +4
e115 Are products for personal use in daily living available for ? 4 3 2 1 0 +1 +2 +3 +4
e125 Are products for communication available for ? 4 3 2 1 0 +1 +2 +3 +4
e130 Are products for education available for _? 4 3 2 1 0 +1 +2 +3 +4
e3 Support and relationships
e310 Are immediate family supportive of ? 4 3 2 1 0 +1 +2 +3 +4
e320 Are friends supportive of ? 4 3 2 1 0 +1 +2 +3 +4
e330 Are people in position of authority supportive of ? 4 3 2 1 0 +1 +2 +3 +4
e340 Are personal care providers and personal assistants supportive
of _ ?
4 3 2 1 0 +1 +2 +3 +4
e355 Are health professionals supportive of ? 4 3 2 1 0 +1 +2 +3 +4
e360 Are other service professionals supportive of ? 4 3 2 1 0 +1 +2 +3 +4
e4 Attitudes
e410 Are individual attitudes of immediate family members
favourable to _?
4 3 2 1 0 +1 +2 +3 +4
e420 Are individual attitudes of friends favourable to _ ? 4 3 2 1 0 +1 +2 +3 +4
e440 Are individual attitudes of personal care providers and
personal assistants favourable to _ ?
4 3 2 1 0 +1 +2 +3 +4
e450 Are individual attitudes of health professionals favourable to
?
4 3 2 1 0 +1 +2 +3 +4
e455 Are individual attitudes of health-related professionals
favourable to ?
4 3 2 1 0 +1 +2 +3 +4
e460 Are societal attitudes favourable to ? 4 3 2 1 0 +1 +2 +3 +4
e465 Are social norms, practices and ideologies favourable to? 4 3 2 1 0 +1 +2 +3 +4
e540 Are appropriate transportation services, systems and policies
available to _ ?
4 3 2 1 0 +1 +2 +3 +4
e570 Are social security services, systems and policies favourable
to ?
4 3 2 1 0 +1 +2 +3 +4
e575 Are general social support services, systems and policies
favourable to _?
4 3 2 1 0 +1 +2 +3 +4
e580 Are health services, systems and policies favourable to _? 4 3 2 1 0 +1 +2 +3 +4
e585 Are general education and training services, systems and
policies available to _?
4 3 2 1 0 +1 +2 +3 +4
e586 Are special education and training services, systems and
policies available to _?
4 3 2 1 0 +1 +2 +3 +4
ANY OTHER ENVIRONMENTAL FACTORS 4 3 2 1 0 +1 +2 +3 +4
4 3 2 1 0 +1 +2 +3 +4
4 3 2 1 0 +1 +2 +3 +4
Appendix 2
OTHER CONTEXTUAL INFORMATION
C1. Give a thumbnail sketch of the individual and any other relevant information (in
particular capacity to cope with dental examination and dental treatment and factors affecting
this capacity)
Oral health data from dental records: dmft/DMFT, age at referral for specialist dental care and
from whom, preventive measures, dental treatment performed, sedation, GA.
C2. Include any Personal Factors as they impact on functioning (e.g. lifestyle, habits, social
background, education, life events, race/ethnicity, sexual orientation and assets of the
individual, personality, past experience)
