Children with Disabilities
Disabilities affect many people today. Prevalence varies between different countries and cultures, but it is realistic to assume that up to twenty percent of all children and adolescents may be affected by a disability or a chronic health condition (Merrick and Carmeli 2003; Bethell et al. 2008). Further, the number of individuals with disabilities is increasing owing to developments in medical health technology, diagnostic tools, and an increase in the number of medical treatment options. For example, more children who have been born preterm survive because of improvements in medical care, but these children also have an increased risk for disabilities.
This chapter will discuss special child patients with disabilities or chronic health conditions and provide examples to assist with their management in the dental office. It will also focus on how the dental team can work together with the child and family to create positive dental appointments and good oral health. As with all child dental patients, caring for the special child involves the pediatric dentistry treatment triangle—the child, the parent or legal guardian, and the dental team. This chapter will provide details about each corner of the triangle. For dental care and treatment to be successful, all three components of the triangle have to collaborate and communicate. Ultimately, the dentist is responsible for the treatment and should acquire appropriate knowledge about the child’s diagnosis or disability, as well as an understanding of the psychology of the family.
Before discussing the corners of the triangle, mention must be made of two important international declarations that have direct bearing on special children. The first is the Convention on the Rights of the Child (United Nations 1989), which was ratified by a majority of nations worldwide. The overriding point in the Convention is that children have rights. According to the third article in the Convention, the “best interest” of the child should be the guiding rule in all decisions involving or affecting children. The Convention has had a significant impact (e.g., The Child Friendly Healthcare Initiative) on the way all children are treated and respected within the health sector. Children have the right to be involved in decisions about treatment, and their points of view should be respected, taking age and maturity into consideration.
The second declaration occurred in 2006 when the United Nations adopted the Convention on the Rights of Persons with Disabilities. Its purpose was “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.” The Convention noted changing societal views on people with disabilities. Historically, individuals with disabilities have been seen as objects rather than subjects. In the past, society provided help and support for people with disabilities in terms of benevolence and charity. This is no longer an acceptable attitude. The Convention strengthened the position of people with disabilities. It stressed that people with disabilities are subjects and individuals like everyone else, and thereby have the same rights for making decisions that influence their lives, including health-related matters. Dental professionals treating children need to be aware of these societal changes in attitude and apply these principles in their practices.
As this chapter deals with children with disabilities, it is important to define “ disability.” Today, disabilities and chronic conditions are not only looked upon as diagnoses defined in the International Classification of Diseases (ICD). The understanding and classification of disability and chronic health conditions is also based on a bio-psychosocial model, as articulated in the World Health Organization’s International Classification of Functioning and Health (ICF), adopted in 2001, and in the Child and Youth Version, ICF-CY, for individuals up to the age of seventeen, adopted in 2007. The ICF as a model describes human functioning in terms of body structure, body function, activities and participation. These functions are influenced by health condition, environmental factors, and personal factors. Today, the ICF-CY as a classification comprises more than 1600 items related to body structure, body function, activities and participation, and environmental factors. It is universal, it allows comparisons of health conditions with different etiologies, and it can describe a person’s health profile from a bio-psychosocial perspective. This perspective holds interest from a dental standpoint, and studies are currently being undertaken to construct a core set in oral health (Faulks et al. 2013). The ICF and ICF-CY provide a new way of understanding the continuum normal→disability. It focuses on the individual’s overall health status instead of focusing only on the specific disability or impairment. By doing so, it becomes evident that anyone can experience a health problem, and thereby a disability.
The Special Child
Every child is a unique individual. This is true for healthy children with normal development and maturation, even more so for children with disabilities or chronic health conditions. Children and adolescents show great variation in maturity, personality, temperament, and emotions. Additionally, cognitive reasoning, behavioral repertoires, and communicative skills vary, especially in children with disabilities. This leads to a corresponding variation in vulnerability and ability to cope with dental treatment.
The disabled child patient can be special in many different ways. This chapter focuses on children with special needs owing to disability or chronic health conditions, but it is important to acknowledge that there are other reasons for being special. For example, children may have language difficulties because they migrated to a new country, or simply because they are part of an immigrant family that communicates mostly in their native language. Communication is essential and the basis of successful treatment, and if the child or parent does not speak your language, interpretation might be required. Children who live in deprived socio-economic settings or who have parents with mental or psychiatric illness are other examples that may require special attention from the dentist. And, it must be remembered that not all children develop and mature at the same rate. These children may not necessarily have impairments, but they are late bloomers and communication and treatment may have to be adjusted to their level of maturity rather than to their chronological age. This last example also demonstrates why dentists, especially pediatric dentists, should have knowledge of child development (see Chapter Two). Development and maturation also vary in children with disabilities and medical conditions on an individual basis, and can be affected by a poor socio-economic environment or parental illness.
The best way to learn about a child’s capabilities is to ask. A thorough case history is a must, and ideally both the child and the parents should be interviewed. The routine anamnesis for the healthy child should include information about medical diagnoses, medication, family and social contexts, school, and peer-related issues. However, for the special child patient, the interview needs to be more detailed and include specific areas related to the child’s condition.
When obtaining a medical history, specifically inquire about the perinatal period and birth. The importance of these developmental periods was emphasized in Chapter Two. Low birth weight or complications like defective saturation or infections can affect nutrition, growth, and development. There are several developmental windows through which all children pass. These windows are open for a limited period of time, and passing through one window, or level, in development provides children with the requirements needed to manage the next level. For example, children born preterm often have difficulties coordinating sucking, swallowing or breathing, which also may be affected by their medical health status (Delaney et al. 2008). Furthermore, children who have problems in breast feeding or sucking as newborns may have an increased risk of developing feeding problems. The developmental train typically forecasts that average children learn to manage fluids and to swallow at an early age (Mason et al. 2005). Based on these skills, children will be able to consume more complex food textures, tastes, and temperatures as they mature and their feeding progresses to include new types of foods. Successful managing and swallowing of the bolus has to be preceded by training and handling of other kinds of foods and liquids. Some children with feeding problems, owing to prematurity or medical problems, develop hyper-sensitivity in the orofacial region, which, if untreated, could make it difficult to carry out oral hygiene procedures like tooth brushing, or even to conduct dental examinations (Mason et al. 2005; Rommel et al. 2003).
The perinatal period is also important for tooth mineralization. Hypomineralization and hypoplasia in enamel have been reported as more common in children born preterm; molar incisor hypomineralization (MIH) occurs more frequently in these children. Further, it is probable that dental behavior management problems and dental anxiety are more likely for children born preterm than for others (Brogårdh-Roth 2010).
The medical history should cover all medical issues. Information about periods of hospitalization, medications, and physicians responsible for the child’s medical care can become detailed and complex. There are several medical diagnoses and medicines that may impact oral health. The dentist is advised to look up both diagnoses and medications in order to find out if there are any direct implications or interactions in relation to dental care. There are also several rare diagnoses and syndromes that the pediatric dentist may encounter. Apart from textbooks, there are several good databases available via the Internet to learn more about general aspects of the diagnoses; for example, Orphanet and National Dissemination Center for Children with Disabilities. Another useful website disomic (Online Mendelian Inheritance in Man) section that can be accessed via PubMed. Some countries also have national centers that specialize in the orofacial and odontological aspects of rare diagnoses. One example is the National Resource Centre for Rare Disorders in Sweden (Mun-H-Center), which provides a website and a smartphone app in English.
Other important case history aspects include information about the child’s normal life and his strengths and weaknesses. For children with disabilities or medical health problems, much time is spent discussing the child’s problems and weaknesses. It is equally important to learn about the child’s strengths.
Knowledge about the strengths of the child is often useful when trying to individualize the appointment. For example, a child might have problems with sudden or loud noises and is easily frightened, but at the same time could be interested in music and may enjoy specific types of music. This information may be important and useful for the dentist. For example, instead of avoiding noise and being concerned about how the child will react to the sound of suction, the dentist could play music during the treatment or explain the treatment and sounds that will occur in terms of music. Some may think this is farfetched, but when working with a special child patient it is often necessary to step out of the more traditional role of the dentist. Being successful with special children implies being open to trying new things and being a bit unconventional in the choice of methods from time to time.
It is not always optimal for children to be present while parents and health care professionals discuss their problems and limitations. One might try to circumvent the problem by either scheduling a parent appointment without the child or arranging a telephone interview. Apart from not exposing the child to negative information, gaining information in advance from the parents makes it possible for the dentist to be better prepared when meeting the special child patient for the first time. By gathering vital information beforehand, the dentist can fully focus on the child and the interactions at the first visit instead of having to start with the anamnesis.
Parents and family constitute the second component of the pediatric dental triangle. Being a parent of a special child is, in many ways, different from being a parent of a healthy child. Living with a child with a disability affects all aspects of family life. It is known to be a powerful stressor for all family members, although several studies have shown that mothers experience more stress and often take more responsibility for the child with a disability or chronic health condition than the rest of the family (Cairns 1992). The concerns and worries can be life-long. They differ from the more normal worries that all parents have about their children as they grow up. Being a parent of an adult child with a disability will bring concerns about where the child should live, receive adequate help and assistance, and what will happen when the parents are no longer around (Hallberg et al. 2010).
The family’s level of self-reliance (capacity) or reconciliation with having a child with a disability influences how they cope with the child’s medical and dental care, and how they will manage parenting. It is important that the family balances its subjective feelings of vulnerability and access to support from others. This perspective, emphasizing the need for support, has been reported to increase psychological and physical well-being in families who have a child with a disability (Scheeran et al. 1997). Apart from support from significant others such as relatives and friends, it is important for families to have support and positive responses from professionals within the social sector and health care professions, including dentistry.
Parents and families who are self-reliant and who have become reconciled to their situation tend to develop feelings of confidence in caring for their children. This can gradually lead to their perception of a less stressful and more manageable situation. It will probably affect how they cope with their children’s needs in relation to medical and dental treatment, including preventive home care. As prevention of oral diseases requires establishing good rapport with the families, the dental teams need to have good knowledge and insight into the lives of those who have disabilities. In order to achieve this balance, it is important not only to treat the child, but also to consider the whole family (Trulsson and Klingberg 2003).
In a study by Trulsson and Klingberg (2003), parents of children with severe and complex diagnoses were interviewed about issues related to their children’s oral health and dental care. The parents identified five qualities they would like to see in dental teams: respect, involvement, continuity, knowledge, and availability. These five qualities might be regarded as a matter of course, but apparently these needs had not been met. Another interesting finding from the interviews concerned the way that the parents described their children’s main orofacial or oral heath-related problems. According to the participating parents, the main problems were related to nutrition and communication. They also mentioned dental malocclusions, but only in relation to the possibility of improving chewing and speech or decreasing the risk of dental trauma, but not in relation to esthetics. No other oral health issues, such as dental caries and gingivitis, were mentioned by the parents. One could argue that this study dealt with children with very complex diagnoses, but nonetheless, it is apparent that the parents’ and dentists’ views on what is most important may differ.
The Dental Team
People with disabilities may be subject to inequality in oral health, in terms of both prevalence of disease and unmet healthcare needs. While most pediatric dentists have training with special child patients, provision of large-scale primary care is only possible through the education and training of all dentists. The literature suggests that it is vital for the dental team to develop the necessary skills and gain experience treating people with special needs in order to ensure access to oral health care for all persons (Faulks et al. 2012).
The dental treatment for children with disabilities varies greatly. There are many reasons for this, and some of importance are related to the individual dentist and dental team. Studies have pointed to the fact that many dentists and other members of the dental team feel a professional uncertainty in treating individuals with disabilities (Bedi et al. 2001; Hallberg et al. 2003). Reasons offered for this attitude include the fact that many dentists lack previous knowledge and experience in treating patients with disabilities, and there is little relevant training in either undergraduate or postgraduate programs (Kinne and Steifel 1979; Bedi et al. 1986; Bedi et al. 1989). This is troublesome, as the ambivalent attitudes from dental professionals towards these patients may contribute to less treatment offered to these patient groups (O’Donnell 1993; Bedi et al. 2001; Klingberg and Hallberg 2012). Being successful in the dental treatment of special child patients, therefore, depends in large part on the dental team, and specifically on the dentist himself.
Another reason for varying treatment is the economic standard in families. Depending on how dental care and social insurance systems are organized in the country, this will impact dental care for children with disabilities and, in the long-term, the oral health of these children. If pharmacological means are required to treat the patient, it can be quite costly. The special child patient offers a positive challenge for the dentist and an opportunity to progress and learn more within the profession. Managing and treating the special child patient successfully, and having the child return with a smile on his face, yields immense professional satisfaction. That is what makes working with special child patients so special.
The remainder of this chapter deals with specific disabilities. It will offer some helpful hints for the dentist and the dental team.
Physical impairments constitute a wide group of diagnoses with some having a substantial impact on the child’s daily life in terms of reduced motor ability. The clinical manifestations vary widely from quadriplegia to conditions affecting the function of a limb or part of a limb. Some of the physical disabilities may be present at birth, while others may be acquired as a result of trauma or disease. A common diagnosis in this group is cerebral palsy, with four main subtypes: spastic (muscle stiffness), atheotid (slow movements), ataxic (lack of muscular balance and coordination) and mixed (having symptoms of more than one type of cerebral palsy, the most common being spastic-dyskinetic). Other common diagnoses are muscular dystrophies and spina bifida. For all diagnoses that lead to a decrease in physical activity, especially if the muscle tone is altered, there is a risk that body posture will impact the oral cavity both in terms of growth patterns and oral health. A hypotonic patient sitting in a position where the head is not supported will have an increased risk of developing malocclusions because the muscular forces that normally regulate the growth are affected. The tone is too low in the tongue, cheeks, and related structures. The same is true for the opposite condition—hypertonic patients. Patients with spastic problems sometimes present with self-inflicted injuries or bite wounds. These patients can be hard to treat, and the dentist may have to use a bite support or mouth prop to prevent the child patient from involuntary biting during treatment.
High quality treatment and good patient management is facilitated if the patient is seated in the dental chair and able to relax. Some patients may have problems moving from their wheelchair to the dental chair. However, the patient should be moved onto the dental chair whenever possible, despite the difficulties that this may entail. To reduce the amount of chair movement, which can heighten a patient’s anxiety, some prefer to pre-set the chair in the approximate position before seating the patient. Having the child in the dental chair improves the ergonomic position for the dentist, facilitating treatment and thereby improving quality in dental care. A dental clinic has to be designed to accommodate wheelchairs. (Some ideas for these accommodations can be found in Chapter Seventeen). In many clinics dedicated to the treatment of the special child, sliding equipment and lift systems are available to move the patient to the dental chair.
To make the dental chair more comfortable for patients, different kinds of cushions may be used. A cushion to sit on is very useful for most of the younger patients, as the normal dental chair is designed for an adult’s full body length (See Figure 7-1). There are also special cushions available that will support the body for patients with low muscle tone or spasticities. These cushions provide a passive support and should not be confused with restraint. Light Velcro is used to keep the cushions in position. For patients with spastic problems, the cushions are adjusted to help flexing knees and hip joints (ideally to a ninety-degree flexion) and to incline the head to a chin-to-chest position. This position can help to reduce spasticities, which in turn makes it easier for the child to relax. These cushions can also be used for patients with intellectual disabilities or neuropsychiatric disorders. Patients without disabilities may also benefit from the comfort of cushions.
Some children with dysphagia may have an increased risk of aspiration. Therefore, it is highly important for the dental team to be alert and ready to provide good assistance to remove secretions and dental debris during treatment. For some children, the problems are so severe that all dental treatment will need to be carried out under general anesthesia.
Sedation often helps to reduce anxiety and assist a child with disability to relax during treatment. Minimum sedation is often sufficient; however, all types of sedation and dosages have to be tailored to the individual child. Nitrous oxide-oxygen sedation should not be used unless the child is able to nose breathe. Apart from being ineffective if not inhaled, exposure to nitrous oxide should be avoided for work environmental reasons. An ASA (American Society of Anesthesiologists) physical status evaluation is extremely important for children with disabilities, and the child’s physician should be consulted if any questions arise. For some children, dental treatment cannot be carried out conventionally or under sedation—treatment under general anesthesia may be the only alternative. Access to facilities for general anesthesia varies between different countries; however, it is important to strive for these resources for this group of children. Not having this option may lead to either suboptimal dental care and deteriorated oral health, or no treatment at all. From that perspective, access to general anesthesia is a communal obligation if society wants to ensure these children’s right to receive oral health care on the same level as others.
Editors’ Note: By cradling a child’s head against the operator’s body, satisfactory stabilization can often be obtained. Using a rubber dam imparts a feeling of security that may be helpful for managing these children. At times, bite blocks may be used in the mouth. A body wrap may be used to help restrain movements, or sometimes a simple strap over a child’s ankles may assist with stabilization. This additional armamentarium serves the purposes of protecting the child, facilitating dental procedures, and providing security. In the development of this chapter, it was recognized that there were regional differences. In Sweden and some other European countries, physical restraints are not culturally accepted and are prohibited by law under any circumstance. It should be emphasized that clinicians in these countries are able to treat patients successfully with extra time devoted to working with the parent and child and without the use of restr/>