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Helping Children and Their Families with Facial Differences – Patient Centered Outcomes and Experiences
Eleftherios G. Kaklamanos
Introduction
People exhibit differences in personality, attitudes, preferences, or looks, which are essential in providing one’s unique identity so that no two people are the same or behave in an identical manner. Contemporary societies place particular emphasis on physical appearance and concerns about “image” might affect a substantial portion of the general population (Gilbert and Thompson 2002; Rumsey and Harcourt 2004). Some people are born with conditions that affect the appearance of the body or the characteristics of the face; other develop deformative changes during the lifetime, which can be acceptable to a greater or a lesser extent (Newell 2000).
Mild degrees of asymmetry are present in ostensibly symmetric faces (Proffit et al. 2019). More severe asymmetry affecting the appearance of an individual’s face and creating a visible facial difference, might be the result of a combination of inherited tendencies and environmental influences on growth of the jaws, that in some cases cannot be treated with conventional orthodontic treatment only and require surgical intervention as well (Severt and Proffit 1997). Such conditions might affect quality of life (QoL) and self‐esteem, especially in females (Agırnaslıgıl et al. 2019; Frejman et al. 2013; Jung 2016; Kurabe et al. 2016; Meger et al. 2021; Ribeiro‐Neto et al. 2018; Sun et al. 2018; Yi et al. 2019).
However, other conditions leading to facial asymmetries and differences, present increased complexity in their structural and functional characteristics creating a significant burden on patients and families not only from the condition itself, but also from its profound psychosocial impacts as well. Such face asymmetries can be congenital or acquired affecting individuals and creating visible differences at any time point in their life. Orofacial clefts are among the most common birth defects worldwide (Mossey and Catilla 2003; Shaw 2004), are fully visible at birth, and represent a spectrum of disorders referring to any cleft affecting the mouth and/or other areas of the face. Clefting has an average incidence of 1:700 births (with significant geographical and ethnical variability), reflecting the intricate and sensitive nature of the mechanisms associated with the early development of the head and neck region (Wilderman et al. 2018). Seventy percent of registered orofacial cleft cases are non‐syndromic, while the remainder develops in the context of various congenital syndromes (Mossey and Catilla 2003; Shaw 2004). Since such disorders are often associated with an asymmetry in the upper dental arch, they might result in a concomitant facial asymmetry. Other congenital conditions leading to facial asymmetry, include hemifacial microsomia (Horgan et al. 1995), craniosynostoses (Mathijssen 2015), hemangiomata (Harris 1997), neurofibromatosis (Cohen 1995), etc. Acquired face asymmetries include those attributed to trauma (Lund 1974), diseases (e.g. juvenile rheumatoid arthritis) (Ince et al. 2000), and other causes (Proffit et al. 2019).
The current chapter will present the concerns, arising from conditions of increased complexity leading to asymmetry and facial difference, regarding parameters known only to the patient, like self‐image, social difficulties, QoL, and other patient‐centered domains. Patient‐centered outcomes provide a context to advance evidence‐based care by considering a wide range set of condition and management‐related parameters that contribute to an individual’s physical, mental, and social well‐being, with the focus being placed on a hierarchy of concerns as determined by patients (DeBronkart 2015; Lavallee et al. 2016). Patient‐centered outcomes involve self‐reports concerning physical, psychological, and social interaction status at various time points and complement clinical assessment in population and individual health needs appraisal, as well as the evaluation of individual and public health interventions (Albrecht and Devlieger 1999; Gimprich and Paterson 2002). The variety of information provided by patient‐centered outcomes contributes to the assessment of the impacts of diseases and treatments on the physical, psychological, and social spheres, sheds light on the reasons individuals react differently to similar conditions or management strategies, and informs the development of clinical strategies and services (Fontaine and Barofsky 2001). Such a perspective might be particularly informative to foster improvement of care for individuals with complex facial differences across a multifactorial model, since their experiences might be different conceptually different from the perceptions of others including clinicians (Valladares‐Neto et al. 2014; Feu et al. 2013).
The Face as a Functional Structure and as an Element of Identity
The head region is characterized by unique anatomical structures and physiological processes fulfilling specialized functional requirements and acting as the origin of various sensory pathways (Siemionow and Sonmez 2008). The entrance to the airway, which is necessary for the function of breathing and smelling, resides in the nose and the nostrils (Hornung 2006; Kastoer et al. 2016). The visual tract begins with the eyelids and the orbits (Huff and Austin 2016). The orbicularis oris muscle, the tongue, and the oral cavity contribute to the functions of swallowing and speech (Siemionow and Sonmez 2008). The external ear leads to the auditory tube and contributes to sound reception (Kastoer et al. 2016). The skin of the face forms a protecting barrier regulating body temperature and sweating (Casey 2002). Moreover, it contains nociceptors and free nerve endings detecting alterations in the mechanical environment that convey proprioceptive stimuli necessary for the function of speech and the coordination of the muscles of facial expression (Connor and Abbs 1998; Johansson et al. 1999; Kawakami et al. 2001; Schulze et al. 1997).
Besides its physiological functions and sensorial capacities, the face plays a cardinal role in determining an individual’s identity and self‐concept. During the course of life, we usually try to improve our facial appearance in order to enhance the presentation of ourselves, acknowledging its importance for social perceptions (Rumsey and Harcourt 2004).
The face is the key for the recognition of other human beings and our interactions with them, by being the primary area for expressing ourselves and demonstrating our emotions (Siemionow and Sonmez 2008). The facial area is also important for body image and self‐perception, through the well‐described interrelationship between appearance and self‐concept (Harter 1999). Moreover, it influences how others perceive and evaluate us, affecting their assessments and subsequent inferences. The selection of a partner for life can be modified by facial and skin characteristics (Jones and Kramer 2015; McNulty et al. 2008; Montoya 2008; Samson et al. 2010; Zebrowitz 1997). Professional decisions, court rulings, and electoral behaviors are partly dependent on similar parameters (Barry 2020; Finkeldey and Demuth 2021; Todorov et al. 2005). Especially the characteristic of attractiveness of the appearance has received particular attention in relation to the psychosocial perception of the face (Zebrowitz and Montepare 2008). Individuals with attractive facial appearance enjoy greater approval and are considered to show greater abilities, characteristics that can constitute advantages in the social sphere (Bashour 2006; Lemay et al. 2010; Maner et al. 2008; Persichetti et al. 2019; Rhodes 2006). Thus, it does not come as a surprise that facial appearance and perceived attractiveness, are important for the construction of one’s self‐image (Chatterjee et al. 2009).
The Facial Difference from the Patient’s Perspective
As the face is central to an individual’s self‐image and the primary area of social demonstration of various personality traits, expressions, and emotions, facial appearance can potentially affect one’s self‐concept, as well as the perceptions and behaviors of others (Grogan 1999; Harter 1997). Even less severe issues of facial appearance, like most malocclusion problems, have been shown to impact the everyday life and activities of young individuals (Bernabé et al. 2008; Foster Page et al. 2005; Johal et al. 2007; O’Brien et al. 2006, 2007). Children needing orthodontic intervention report twice as many impacts than those with little or no need (Bernabé et al. 2008). Reduced oral health‐related quality of life (OHRQoL) has been observed in children as well (Do and Spencer 2008). Similar findings have been reported in young adults; maxillary and mandibular crowding more than two mm in the incisor area increases the chance of issues with “smiling, laughing, and showing teeth without embarrassment.” When overjet is more than five mm, emotional impacts have been observed (Traebert and Peres 2007). Overall, the self‐reported impact of malocclusion and dental appearance encompasses the psychological and social functions, including domains such as smiling, emotional state, and social encounters (Bernabé et al. 2008; Traebert and Peres 2007).
In individuals with significant facial differences, the interrelationship of the constructs of appearance and self‐image is probably stronger than in the rest of the population (Kent and Thompson 2002). Although, perfect facial symmetry is rare when asymmetry is an individual’s main concern it might become very significant as the patient encounters the problem every time one looks in the mirror (Severt and Proffit 1997). Irrespective of the time point a visible facial difference is being recognized, at birth or later in life, it might affect an individual’s psychosocial sphere and lead to alterations in body image, impaired self‐esteem, and QoL (Rumsey and Harcourt 2004). However, it is not possible to identify a priori the individuals with significant impairments (Feragen et al. 2009, 2015; Hunt et al. 2007). Resilient individuals manage to cope effectively and downgrade the impacts of their difference (Rumsey 2002). Resilience can be influenced by a person’s subjective perception of how noticeable their difference is to others (Harris 1997), sociocultural factors (Rumsey 1997), coping styles (Moss 1997), social interaction skills (Kapp‐Simon 1995), as well as family environment and social support (Lansdown et al. 1997).
Psychological Implications
Whether congenital or acquired, facial differences may have important psychological implications, including altered body image and poor self‐esteem (Rumsey et al. 2002, 2003, 2004). Children with cleft tend to be less satisfied with their appearance and exhibit body image problems, especially with features in the area of the nose, mouth, and teeth (Feragen et al. 2015; Hunt et al. 2006, 2007; Slifer et al. 2004). In a Swedish nationwide register cohort with orofacial clefts, children presented with increased risk for personality disorders (Tillman et al. 2018) although major problems are not experienced usually (Hunt et al. 2005). Children with cleft lip and palate have been reported to have a more external locus of control, feel more dependent, present higher hostility, and demonstrate depressive symptoms and negative outlooks. Moreover, they are prone to feel less accepted by their parents, who are considered to show negative feelings and worry a lot (Berger and Dalton 2009; Collett et al. 2012; Feragen and Borge 2010; Feragen et al. 2015).
Craniofacial conditions are often associated with negative self‐image and lower self‐confidence that might last for many years (Crerand et al. 2017; Rumsey and Harcourt 2004). Almost three‐quarters of a group of 15‐year‐old adolescents and 20‐year‐old adults with clefts felt that their self‐confidence was impaired by their condition (Turner et al. 1997). Self‐described low self‐esteem, depressive symptoms, and anxiety in children with unilateral and bilateral cleft lip and palate are related to the facial appearance difference, with greater problems observed in the bilateral cleft lip and palate group that expectedly shows greater facial difference (Demir et al. 2011; Hunt et al. 2007). Danish adults with clefts have been reported to have double suicide rate (Herskind et al. 1993), however, investigations in Sweden did not produce corroborating results (Tillman et al. 2018). The degree of the effect of a facial difference on psychological parameters might be moderated by various factors, as research has shown that reports of self‐esteem in affected children might be similar or even higher than those of non‐affected groups (Mink van der Molen et al. 2021; Walters 1997). Psychosocial resilience has been associated with acceptable emotional functioning, appearance satisfaction, and a low exposure to teasing events (Feragen et al. 2009, 2010).
Social Interaction Implications
Any visible facial difference might also include a social handicap parameter, as, additionally to the impact on one’s emotions, thoughts, and behaviors, it can be noticed by others as well (Macgregor 1989). Moreover, facial differences that affect the muscles of the face and problems with hearing, vision, or speech, might result in unusual verbal and nonverbal communication and prevent the interpretation of expressions and emotions of affected individuals during social encounters leading to difficulties in liaising with others (Brown et al. 1997; Fellinger et al. 2009; Macgregor 1989; McAlpine and Moore 1993; van Daal et al. 2007). For example, nerve deficits in some patients with craniofacial microsomia might lead to similar problems (Rives Bogart and Matsumoto 2010). The extent of the impact, however, depends on the complex interrelationship of various social and personal parameters (Rumsey and Harcourt 2004).
Social interaction impairments such as anxiety and inferences of negative evaluation by others have also been frequently reported (Rumsey and Harcourt 2004). The impediments to social interaction and the avoidance of social relationships are secondary to the reported difficulties in meeting people, making new friends, and maintaining long‐term relationships (Robinson 1997). The social entourage, family, and peers can complicate the psychosocial impairment by comments, harassment, and teasing (Feragen and Borge 2010; Feragen et al. 2009; Rumsey 2002). Children with a facial difference are at higher risk of social stigmatization (Masnari et al. 2012). Sixty percent of a sample of children with a cleft condition reported being subjected to teasing, an event that caused excessive anxiety to a quarter of them (Turner et al. 1997). Patients with craniofacial microsomia experience also bullying and have low self‐esteem (Johns et al. 2018; Luquetti et al. 2018; Padwa et al. 1991).
As a consequence, negative attitudes and a feeling of reduced control in social encounters might result in prepossession with one’s appearance and a vicious circle of further social avoidance, reduced social support, and increased psychosocial impacts (Rumsey and Harcourt 2004). Children with unilateral and bilateral cleft lip and palate have been reported to demonstrate adjustment problems, as judged by teachers and parents (Murray et al. 2010), or other behavioral problems especially if they are dissatisfied with their appearance (Hunt et al. 2006, 2007; Wehby et al. 2014). However, contrasting findings have been reported as well (Brand et al. 2009). Adaptation of patients to facial disfigurement seems to be enhanced in patients before or during adolescence. Acquiring a visible facial difference later than adolescence leads to greater disparity with the pre‐existing self‐concept, significant challenges in coping with the new situation, and increased consciousness of self‐image and social perceptions (Rumsey 2004). Such adverse consequences are independent of gender and the magnitude of the defects (Fingeret et al. 2010, 2012; Katz et al. 2003; Rumsey et al. 2003). It is interesting to note that the range of concerns, emotional reactions, and behavioral patterns exhibited by individuals with visible differences can be similar to those observed by some individuals dissatisfied with specific traits of their apparently “ordinary” appearance (Rumsey 2002).
Quality of Life Implications
Established on the multidimensional concept of health as “a state of complete physical, mental, and social well‐being and not merely the absence of disease or infirmity,” the notion of QoL is described as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (World Health Organization 1995). A direct implication of this description is that perception of QoL may differ in relation to the historical period, the cultural norms, and individual experiences. Within this multifactorial framework, the aspects of QoL specializing on how individuals understand their general health and oral health level refer to the terms health‐related quality of life (HRQoL) and OHRQoL (Inglehart and Bagramian 2002).
HRQoL encompasses the physical, psychological, and social aspects of health, perceived as distinguishable domains moderated by individual experiences, beliefs, expectations, and perceptions (Testa and Simonson 1996). The aspects most frequently included in HRQoL definitions involve physical, emotional, psychological, social, spiritual, and functional parameters (Gimprich and Paterson 2002). Consequently, assessing HRQoL presupposes a holistic understanding of health beyond physical condition assessment to include the constructs of psychological status, social interaction, and self‐realization (Atchison et al. 2006; Slade 2002
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