As biomedical techniques become increasingly sophisticated, patients who might in the past have had a poor prognosis are successfully completing treatment. However, those who undergo treatment are often left with impaired function or appearance, and the process of treatment may last months or years with no clear guarantees about outcome. This situation applies to maxillofacial conditions from head and neck cancers to severe burn injuries. Pioneering treatments such as facial transplantation have added to the potential reconstructive options for patients with significant facial injury, but these approaches require a considerable investment in terms of patient selection, preparation, and management, including a commitment to a multiprofessional approach to care.
Although the importance of psychological rehabilitation has been acknowledged since the pioneering work of McIndoe and his team at East Grinstead during the 1940s, there is increasing interest in the psychological problems that patients experience and the psychological predictors of good long-term outcome. This area of research has produced a much better understanding of the factors and processes that predict psychological adjustment and a corresponding focus on evidence-based psychological interventions with clear and measurable goals. The National Institute for Clinical Excellence (NICE) guidelines, National Service Frameworks, and the National Burn Care Review in the United Kingdom have emphasized rehabilitation and psychological processes that often are delivered by a stepped-care approach.
Social Psychology and the Face
The neurological basis of face perception and recognition is a fascinating area of research whose complexity highlights the importance of the face in the social context. Each of us is unique, although the transfer of facial characteristics to our offspring ensures the family and racial characteristics that underpin the cohesiveness of social groups. The face is an important determinant of our internalized sense of who we are. Just as we are instantly recognized by friends and family, we have an internalized body image that is highly resistant to change. Accepting a change in appearance is not the same thing as habituating to it, and patients often describe shock at catching sight of themselves in a shop window or in a photograph many years after the initial trauma. Adapting to any disfiguring condition, even when the change is minor, can be a very long process, which often is described as one of bereavement with a clear focus on grieving for lost looks.
Physical attractiveness is judged to a significant extent on facial characteristics such as skin texture, size and shape of eyes, and facial symmetry, with vast amounts spent each year on cosmetics that enhance these features. Disfiguring conditions have a huge personal impact in terms of perceived attractiveness, with interesting sex differences. Whereas facial scarring, for example, can exaggerate the sexual stereotype for men (e.g., more macho, aggressive, willing to take risks), for a woman, the stereotype is weakened, and she may appear less feminine and less attractive. This does not mean that disfigurement is less of an issue for men. The largest study of concern about appearance dispelled several myths about which patients are disturbed about appearance. In a sample of 1265 participants recruited from community and clinical settings, gender and age were not powerful predictors of distress, and there was a large amount of variation in the responses. Young men in particular may struggle and may behave in a hostile or aggressive way in social encounters as a result of negative responses from their peer group.
Barriers to sexual activity, such as altered facial sensation and the ability to kiss a partner, can cause enormous distress. Withdrawal from intimacy is a major problem for people with anxiety about their bodily appearance, and gradual avoidance of social activity occurs as the prospect of an intimate relationship is perceived as more remote.
The head, neck, and face provide us with the basis of communication. Laryngectomy and removal of the vocal cords permanently abolishes the ability to speak, with future “speech” achieved through a variety of alternative mechanical means. Cancer and the treatment for invasive disease or significant trauma can have a major impact on appearance, speech, swallowing, and shoulder function after neck dissection.
In addition to providing the neural and muscular basis of speech production, nonverbal signaling, such as eye contact, facial gesture, and blushing, depend on facial structure. These nonverbal behaviors support verbal exchanges, helping to pace and structure conversation and allowing us to express emotion and to indicate personal attitudes. Interruption of these mechanisms, often because patients try to avoid eye contact or smiling when there is a facial palsy, can add to the awkwardness of social encounters. Problems may also occur with swallowing. Ingestion of food, chewing, swallowing, and salivation are frequently affected after maxillofacial trauma, with profound implications for ensuring optimal nutrition and impacting dramatically on the social aspects of eating. Patients can be embarrassed about the difficulties of drooling, spilling food, or using special utensils or straws. Interruption of what is an important social activity may be expected to impact self-esteem. The inability to express personality through speech and social exclusion from activities such as having a drink or a meal with friends can affect self-image as much as an objective change in physical appearance. For patients who experience major surgery or accidental trauma to the face, the psychological impact of facial dysfunction may affect any or all of these areas.
Psychosocial Impact of Facial Disfigurement
Research studies are remarkably consistent in describing the problems that people with a disfigurement encounter. The predominant difficulties lie within the area of social interaction, with people being subjected to unwanted intrusions such as staring or comments. Macgregor’s classic study has not been bettered in terms of summarizing patients’ self-reported data. “In their attempts to go about their daily lives, people are subjected to visual and verbal assaults and a level of familiarity from strangers, including naked stares, startled reactions, double takes, whispering, remarks, furtive looks, curiosity, personal questions, advice, manifestations of pity or aversion, laughter, ridicule, and outright avoidance”.
First impressions are important in our image-conscious society, and adapting to disfigurement, even when minor, can be profoundly difficult. First encounters are particularly stressful, staring and intrusions are common, and social avoidance can rapidly develop as the simplest means of survival. As in other anxiety disorders, avoidance of the feared situation provides only temporary relief and removes the opportunity to learn by experience or build up a repertoire of coping strategies. Confronting social situations becomes increasingly difficult, and one of the components of psychological intervention is graded exposure to eliminate the anxiety response, reframe beliefs about the social environment, and develop positive coping strategies.
Not surprisingly, this group of people may have very low self-esteem and expectations about life chances. For example, many believe that they need to make compromises in terms of relationships (e.g., take what you can get) or think that they have diminished employment prospects. For children, all the problems of chronic illness, such as repeated hospitalizations, time off from school, and disruption of peer relationships and education, may be compounded by bullying at school and the lowered expectations of teachers and parents. Studies have demonstrated that even in normal classroom situations, sensitivity about appearance can impact behavior, with children unwilling to put up their hands to answer questions if they feel uncomfortable about what they look like.
Although the perceived hostility from other people has led to the description of facial disfigurement as the last bastion of discrimination in the United Kingdom, the situation is not completely one sided. The increased uncertainty, embarrassment, and self-consciousness that people experience when their appearance changes can often prompt changes in behavior that elicit a negative response from other people. Altered posture, avoidance of eye contact, hiding the face with the hand and hair, and overzealous use of cosmetic camouflage and clothing, especially hats, can elicit the very responses that the individual is trying to avoid.
It is easy to see how repeated exposure to negative events can lead to a behavioral change, particularly increasing avoidance of social situations, but the role of individual beliefs is also important. People behave differently in response to someone who is visibly different, and the expectation of a negative response is enough for the visibly different person to perceive and report events differently. Social psychologists have examined the impact of these beliefs about disfigurement. Actors were made up to look disfigured, but under the guise of having fixative added and unknown to them, the experimental group had that make-up removed before being exposed to the experimental situation. Subjects who believed themselves to be scarred reported stronger reactions from other people than the control group. This finding might have resulted from heightened sensitivity leading to the misinterpretation of events or to subtle alterations in the subject’s behavior, such as poor posture or eye contact, producing genuinely stronger reactions from the onlooker. However, sensitivity to the disfigurement and the tendency to attribute all negative experiences to facial appearance, even when unrelated, is a commonly reported problem and a possible explanation for the significance to the individual of apparently only minor disfigurement.
From the clinical perspective, these findings are important because the modification of inappropriate cognitions (i.e., beliefs) and the introduction of more appropriate cognitions and behavior form the basis of effective psychological intervention in this group. Social anxiety and avoidance can be effectively targeted using this well-established approach.
Relatively few studies have attempted to look beyond the description of psychosocial problems in the target population to the factors associated with good adjustment in the long term. There is a strong, erroneous presumption that psychological distress is proportionate to the severity of the disfigurement, a finding that has no basis in research findings but nevertheless drives referral patterns and services. It is instead the individual factors driven by cognitive processes that predict long-term adjustment. Macgregor illustrated this idea many years ago, identifying coping style as important. Those who cope well and report fewer problems tend to use the positive coping strategies summarized in Box 29-1 , all of which allow them to manage social situations. Negative coping strategies are those that facilitate the avoidance response.
Findings of the Appearance Research Collaboration further clarified the factors and processes that are associated with positive adjustment in the long term. They demonstrated that biomedical factors such as the cause, timeline, and severity of the condition do not predict adjustment, although visibility to others is important. The psychological characteristics of those who were positively adjusted included higher levels of optimism, greater feelings of social acceptance and satisfaction with social support, a lack of concern about negative evaluations by others, and a self-system with lower levels of salience and valance afforded to appearance-related information.
This research is important to those working in the maxillofacial trauma field, primarily because it identifies individual behavior, rather than the condition or appearance, as a determinant of successful long-term outcomes. This is encouraging because behavior is learned and can be modified. These ideas provide the basis for psychological management of patients with altered appearance, who do not have to rely solely on biomedical solutions aimed at restoring appearance.
Psychosocial Impact of Facial Disfigurement
Research studies are remarkably consistent in describing the problems that people with a disfigurement encounter. The predominant difficulties lie within the area of social interaction, with people being subjected to unwanted intrusions such as staring or comments. Macgregor’s classic study has not been bettered in terms of summarizing patients’ self-reported data. “In their attempts to go about their daily lives, people are subjected to visual and verbal assaults and a level of familiarity from strangers, including naked stares, startled reactions, double takes, whispering, remarks, furtive looks, curiosity, personal questions, advice, manifestations of pity or aversion, laughter, ridicule, and outright avoidance”.
First impressions are important in our image-conscious society, and adapting to disfigurement, even when minor, can be profoundly difficult. First encounters are particularly stressful, staring and intrusions are common, and social avoidance can rapidly develop as the simplest means of survival. As in other anxiety disorders, avoidance of the feared situation provides only temporary relief and removes the opportunity to learn by experience or build up a repertoire of coping strategies. Confronting social situations becomes increasingly difficult, and one of the components of psychological intervention is graded exposure to eliminate the anxiety response, reframe beliefs about the social environment, and develop positive coping strategies.
Not surprisingly, this group of people may have very low self-esteem and expectations about life chances. For example, many believe that they need to make compromises in terms of relationships (e.g., take what you can get) or think that they have diminished employment prospects. For children, all the problems of chronic illness, such as repeated hospitalizations, time off from school, and disruption of peer relationships and education, may be compounded by bullying at school and the lowered expectations of teachers and parents. Studies have demonstrated that even in normal classroom situations, sensitivity about appearance can impact behavior, with children unwilling to put up their hands to answer questions if they feel uncomfortable about what they look like.
Although the perceived hostility from other people has led to the description of facial disfigurement as the last bastion of discrimination in the United Kingdom, the situation is not completely one sided. The increased uncertainty, embarrassment, and self-consciousness that people experience when their appearance changes can often prompt changes in behavior that elicit a negative response from other people. Altered posture, avoidance of eye contact, hiding the face with the hand and hair, and overzealous use of cosmetic camouflage and clothing, especially hats, can elicit the very responses that the individual is trying to avoid.
It is easy to see how repeated exposure to negative events can lead to a behavioral change, particularly increasing avoidance of social situations, but the role of individual beliefs is also important. People behave differently in response to someone who is visibly different, and the expectation of a negative response is enough for the visibly different person to perceive and report events differently. Social psychologists have examined the impact of these beliefs about disfigurement. Actors were made up to look disfigured, but under the guise of having fixative added and unknown to them, the experimental group had that make-up removed before being exposed to the experimental situation. Subjects who believed themselves to be scarred reported stronger reactions from other people than the control group. This finding might have resulted from heightened sensitivity leading to the misinterpretation of events or to subtle alterations in the subject’s behavior, such as poor posture or eye contact, producing genuinely stronger reactions from the onlooker. However, sensitivity to the disfigurement and the tendency to attribute all negative experiences to facial appearance, even when unrelated, is a commonly reported problem and a possible explanation for the significance to the individual of apparently only minor disfigurement.
From the clinical perspective, these findings are important because the modification of inappropriate cognitions (i.e., beliefs) and the introduction of more appropriate cognitions and behavior form the basis of effective psychological intervention in this group. Social anxiety and avoidance can be effectively targeted using this well-established approach.
Relatively few studies have attempted to look beyond the description of psychosocial problems in the target population to the factors associated with good adjustment in the long term. There is a strong, erroneous presumption that psychological distress is proportionate to the severity of the disfigurement, a finding that has no basis in research findings but nevertheless drives referral patterns and services. It is instead the individual factors driven by cognitive processes that predict long-term adjustment. Macgregor illustrated this idea many years ago, identifying coping style as important. Those who cope well and report fewer problems tend to use the positive coping strategies summarized in Box 29-1 , all of which allow them to manage social situations. Negative coping strategies are those that facilitate the avoidance response.
Findings of the Appearance Research Collaboration further clarified the factors and processes that are associated with positive adjustment in the long term. They demonstrated that biomedical factors such as the cause, timeline, and severity of the condition do not predict adjustment, although visibility to others is important. The psychological characteristics of those who were positively adjusted included higher levels of optimism, greater feelings of social acceptance and satisfaction with social support, a lack of concern about negative evaluations by others, and a self-system with lower levels of salience and valance afforded to appearance-related information.
This research is important to those working in the maxillofacial trauma field, primarily because it identifies individual behavior, rather than the condition or appearance, as a determinant of successful long-term outcomes. This is encouraging because behavior is learned and can be modified. These ideas provide the basis for psychological management of patients with altered appearance, who do not have to rely solely on biomedical solutions aimed at restoring appearance.
Psychological Aspects of Maxillofacial Trauma
Anxiety, Depression, and Posttraumatic Stress Disorder
Disfigurement exposes individuals to a range of social stressors and psychological stresses that are predisposing factors for a trio of disorders. The relevant literature in this area indicates that depression, anxiety, and posttraumatic stress disorder (PTSD) are the most commonly reported psychological sequelae of burn injury or other types of trauma. The three often exist together, and high levels of comorbidity are expected. Many individuals who suffer burn injury or trauma already show a range of behaviors that place them at risk for mental illness, substance abuse, social problems, or previously existing psychiatric problems. The challenges of dealing with facial injury and disfigurement add to the psychological difficulties that may already be present. The degree to which an individual feels responsible for the injury may affect his or her attitude about asking for help. Shame is an important construct in this context, and survivors of trauma often are preoccupied with the idea that they have survived while others have not.
Psychiatric Assessment and Management
Studies based on psychiatric models measure symptoms of mental distress, such as depression, anxiety, and PTSD, which are clearly defined within the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) criteria and measured using standardized scales such as the Hospital Anxiety and Depression Scale.
Depression
Depression can be understood in many ways. Depressed mood often is explained in terms of a subjective feeling of unhappiness, encompassing feelings of guilt, worthlessness, listlessness, apathy, and self-loathing. Depression can be associated with other medical problems and develop as a secondary reaction. Depressed mood can be seen as a reaction to circumstances that an individual can work through with assistance from others and that will dissipate over time. Clinical depression is more serious and more pervasive, and it often requires formal intervention to be resolved.
To obtain a diagnosis of clinical depression, an individual must display a cluster of symptoms that usually comprise depressed mood, loss of interest, anxiety, sleep disturbance, loss of appetite, lack of energy, and suicidal thoughts. Additional symptoms may include weeping, slowness of speech and action, extreme withdrawal, hallucinations (often of ridiculing voices), and delusions that the person has been responsible for a horrific catastrophe. Thoughts of death, self-harm, or suicide can occur.
It is more difficult to recognize depression in someone who is physically unwell or who has been injured. Many of the physical symptoms typically described for depression can overlap with symptoms of physical illness. For example, appetite loss is to be expected if an individual has difficulties eating. An instrument such as the Hospital Anxiety and Depression Scale, which was designed to detect depression and anxiety while disregarding ambiguous physical symptoms, can help to screen patients at risk for anxiety or depression, or both.
Anxiety Disorders
Fear is a natural response to anything perceived as threatening. Patients are often anxious about their diagnosis and treatment, and the heightened arousal can cause difficulties in attending to information in the consultation or following instructions for rehabilitation. Medical treatment is often associated with pervasive anxiety. An anxious patient is particularly tuned into threatening stimuli and is more likely to interpret information as threatening and find it difficult to assess risk objectively. The process of repeat scanning as part of follow-up can produce a cycle of dread in anxious patients, who become more and more preoccupied as the target date approaches, gaining only temporary relief afterward as the build-up to the next scan begins.
Responses occur on a number of levels: behavioral, cognitive (thoughts), affective (emotions), and physiological. Social fears and anxiety related to disfigurement are common. Much of this chapter discusses approaches that can be used to help individuals to overcome these fears and anxieties.
Adjustment Disorder
Adjustment disorder is a somewhat vague term used by psychiatrists to describe the cluster of symptoms, including depressed mood, anxiety, and physical complaints such as pain, that are common in people who struggle to engage in rehabilitation, including physiotherapy and resuming a normal diet. Although it is not abnormal to find a change in circumstances challenging, some may require additional support and reassurance. People also vary in their acceptance of prostheses, including walking and hearing aids. Managing chemotherapy with the associated changes in energy levels, appearance, and general well-being may be exceptionally difficult for some people, and psychological intervention can assist them to set realistic goals, pace activities, and focus their attention appropriately.
Treatment
Effective treatment may be delivered by a combination of approaches. Psychological treatment (particularly cognitive-behavioral approaches, which produce the best outcomes) has become much more widely understood, and access to these techniques has been improved by the Increasing Access to Psychological Treatment (IAPT) protocols in primary care in the United Kingdom for people with mild or moderate depression and anxiety.
Depression can result from negative thinking styles and biases in perception and cognitive functioning. The therapist and patient work together to change this worldview using cognitive approaches and behavioral experiments in the context of a warm, empathic, and genuine relationship. Evaluation of these approaches demonstrates improvement of longer duration and generalizability. So-called third-wave approaches include mindfulness, which combines Western psychotherapy and Eastern meditation to focus the individual in the present rather than on thoughts about the past and future. This is a particularly effective approach to preventing relapse. Medication is used for people with severe symptoms, but it should be combined with psychological therapy as set out in the NICE guidelines for the treatment of depression. Anxiety disorders typically respond well to a combination of psychological therapy (e.g., cognitive-behavioral approaches) and medication. These approaches are clearly defined in the NICE guidelines for the treatment of anxiety.
Posttraumatic Stress Disorder
Most patients being treated for maxillofacial injuries sustained the damage in a traumatic incident. This section considers the possible consequences of exposure to trauma, effects on psychological functioning, and treatment approaches. This is not a comprehensive review of this vast area, and further information can be found in other textbooks.
Humans exist in a continuous state of homeostasis. As the environment changes, we try to adapt to the shifting demands. This applies to everyday occurrences and to extraordinary experiences. As we age, we learn to make sense of what has been encountered and to place it in context. When an event occurs that is far outside ordinary expectations, a major process of adjustment may have to take place, and feelings may be unique, powerful, and unfamiliar. When we are threatened or frightened, the body and brain are programmed to ensure our survival (i.e., fight, freeze, or flight reactions).
If exposed to threat, the individual usually tries to deal effectively with the event by thinking about it and attempts to learn how to cope better with the threat if it occurs again in the future. However, traumatic events may be processed very differently from the way in which other events and memories are processed. Brewin offers a clear explanation of the dual processing theory, which proposes that highly emotionally charged images are processed and stored without access to the perceptual processing pathways that confer meaning. Flashbacks occur when sensory triggers (i.e., sights, sounds, or scents) stimulate the re-emergence of images without the ability to place them in context, with the result that they become relived or re-experienced. Considerable research supports this explanation, including the recommended treatment approaches set out for adults and children in the NICE guidelines.
Maxillofacial trauma implies exposure to some type of trauma that results in injury to the face. Interpersonal violence is becoming the most common cause of maxillofacial trauma for adults in Western society. Being exposed to violence from another individual can be seriously challenging to our beliefs regarding the world as a safe, benevolent place to be. The response to violence may be to view everyone as malevolent. Other causes of injury, such as car crashes and accidents in the home or at work, also can challenge the view of the world as a predictable and safe place. It is understandable that the immediate response is often one of avoidance and reluctance to leave the safety of a familiar environment; however, the sooner people can get back to their familiar, everyday lives, the earlier their recovery.
Definition of Posttraumatic Stress Disorder
The syndrome of PTSD was officially recognized in 1983 by the American Psychiatric Association. After several updates and revisions, the current definitions in the DSM-IV are those in common circulation. They are outlined in Box 29-2 .
The diagnosis of posttraumatic stress disorder (PTSD) requires a person to have been exposed to a traumatic event of exceptional severity and to be re-experiencing distressing symptoms. People with PTSD usually show emotional detachment from people, places, or activities previously enjoyed; numbing; hyperarousal; and avoidance of stimuli associated with the trauma. Either of the following factors, which usually arise within 6 months of the trauma, must also be present:
- 1
Partial or complete impaired recall for some aspects of the period of exposure to the stressor
- 2
Persistent symptoms of increased psychological arousal that were not present before the trauma
- •
Sleep disturbance (falling or staying asleep)
- •
Anger or irritability
- •
Concentration difficulties
- •
Hypervigilance
- •
Exaggerated startle response
- •
Facial disfigurement can compound many of the symptoms shown in Box 29-2 by giving constant reminders of the trauma and increasing feelings of social isolation. Many individuals with maxillofacial trauma have experienced events that can predispose them to PTSD.
Incidence and Prevalence of Posttraumatic Stress Disorder
Epidemiological research suggests that most people experience at least one traumatic event during their lifetimes. Intentional acts of violence are more likely to lead to PTSD than accidents. Men tend to experience more trauma than women, but women tend to experience higher-impact events. Women are more likely to develop PTSD in response to a traumatic event than men.
Posttraumatic Stress Disorder in Children and Adolescents
There has been little systematic research about children with PTSD. Children affected by trauma demonstrate symptoms of re-experiencing, avoidance, numbing, and increased arousal, and younger children show more obvious aggression. Parental behavior is very influential, and children often choose not to talk about trauma or their reactions to it with their parents. This means that the condition is underdiagnosed and that a parental report alone does not constitute an adequate assessment.
Identification of Posttraumatic Stress Disorder
Normal Reactions and Symptoms
It is common for those who have been exposed to trauma to experience, at least briefly, some of the previously described symptoms. They typically pass quickly without treatment. Those who have been traumatically injured often thought that they were going to die. Re-experiencing the traumatic event in flashbacks or nightmares is common, but this reaction usually passes with time. Reminders of the accident, including seeing the disfiguring injury itself, can cause a recurrence of symptoms. This can lead to avoidance of the feared stimulus that can bring back the disturbing images.
NICE Guidelines for Treatment
Most people have a period of sleeplessness, preoccupation, and distress related to trauma. This is not PTSD according to the NICE guidelines, and it is important not to intervene too early.
Watchful Waiting in the First Month
Input from involved professionals involves support and education. Through reassurance, explanation, and normalization, individuals and their families can learn about their reactions. Simple anxiety management strategies focused on controlled breathing and distraction can help during this time. If this approach is followed, an assessment should be offered at the end of this period.
Treatment of Posttraumatic Stress Disorder
If an individual appears to be suffering from the symptoms described previously and they persist for longer than 1 month after injury, assistance from other sources should be sought. The NICE guidelines recommend psychological intervention as the first-line treatment before medication is considered. Psychological treatments take the form of trauma-focused cognitive-behavioral therapy (CBT) and eye movement desensitization and reprocessing (EMDR). Trauma-focused CBT usually requires 8 to 12 sessions. By retelling the experience in detail over repeated sessions, the highly sensory images are organized and reprocessed so that they become experienced as memories rather than as reliving the event. Avoidance behaviors are managed by gradual exposure and anxiety reduction.
EMDR involves the use of rapid side-to-side eye movements while revisualizing the trauma. This appears to help the processing of flashbacks in a way similar to trauma-focused CBT. It is a recognized treatment with good outcomes.
Medication can be considered for adults. The NICE guidelines recommend selective serotonin reuptake inhibitors (SSRIs) or the tetracyclic antidepressant mirtazapine. When medication is used, it usually is continued for at least 12 months. However, these medications should be offered only in certain circumstances:
- •
The person chooses not to have psychological treatment.
- •
The person has not benefited from psychological treatment.
- •
The person cannot start treatment because of the risk of further trauma.
- •
The person has a comorbid depression that reduces the effectiveness of psychological treatment.
Treatment of Posttraumatic Stress Disorder in Children
The NICE guidelines recommend a course of trauma-focused CBT for older children with severe symptoms within the first month after trauma. There is no evidence for the benefit of single-session debriefing at any age. After 3 months, advice for children is as follows:
- •
CBT should be offered and adapted to the developmental level, age, and circumstances.
- •
CBT should be a course of 8 to 12 sessions for children or young people who have chronic PTSD.
- •
When appropriate, parents and child should be involved in the treatment plan.
- •