Pediatric Burn Injury

Mary Rose PsyD

Patricia Blakeney PhD

Acknowledgments: We would like to thank the National Institutes of Disability and Rehabilitation Research Grant #H133A70019 and the Shriner Multicenter Outcomes Research Grant #9115 for their funding support.

No injury is more painful than a severe burn; no image more horrifying than that of a child transformed by burns. Burns destroy ears and noses, fingers and toes; vision and hearing fade. Burn injuries induce immense pain as do the treatments to combat infections and burn-scar contractures. Many survivors must learn to walk without legs, to write without fingers, and to dance without toes. Exercise to regain strength necessitates more pain in a body already fatigued by healing, hormone depletion, and chemical imbalance.

Yet, it is the nonphysical child who suffers the most enduring pain—the psychological “spirit” of the child, who must constantly be on guard, prepared to defend against stares and taunts of others who fail to understand the journey behind burn scars. Ordinary outings to a grocery store or movie present emotionally charged and exceptionally difficult interpersonal challenges. A burned child constantly monitors his or her behavior for any action that is likely to attract attention, while simultaneously mustering the courage to tolerate and cope with potential responses that attention may invoke (1). It is impossible for the burn-scarred child not to attract attention. An “appearance impaired” child rarely has an opportunity to remain anonymous, to be respectfully ignored, or to blend into the crowd (2).

PURPOSE OF THIS CHAPTER

Consequent to scientific advances in treating acute burns, the number of children in the United States who survive massive burns has increased significantly (3, 4). Whereas 25 years ago only half of the children with greater than 50% Total Body Surface Area burns (TBSA) survived, now half of those who have 85% TBSA burns and essentially all those with smaller burns routinely survive (5). As the number of children living with burns has increased, so too has concern for psychosocial outcomes and interest in interventions to enhance quality of life for burned children. The quality and quantity of published articles in this field improves each year, reinforcing that psychological and social interventions must be integral to burn treatment throughout care, from acute injury through the years of rehabilitation and reconstruction.

This chapter is written for health care professionals who engage in the difficult, but rewarding endeavor of helping children and their families recover from massive burns. First is a summary of what is known about long-term outcomes, psychosocial adaptation, and quality of life for pediatric burn survivors en route to adulthood.
Knowing the possibilities of remarkable success as well as the common pitfalls during recovery can encourage both professional and patient through these times. Findings based on these studies can be used to guide patients and their families through what may seem like a massive obstacle course. We describe psychological issues and their importance as they evolve in a typical pattern of recovery through time. Regardless of when one first becomes involved in the care of a burned child, it is helpful to have a perspective of the typical process of rehabilitation. Although the patient may be focused on the present moment, the helper who has awareness of both the child’s history and future possibilities is better able to assist the patient in moving through the moment adaptively. We suggest interview questions, therapeutic tasks, and interventions to assist burned children, their families, and the professionals who care for them as they all move through the process of healing and growing together.

LONG-TERM PSYCHOSOCIAL OUTCOMES OF PEDIATRIC BURN INJURIES

Contrary to expectations, empirical data indicate that most burn survivors, even those with the most extensive and disfiguring injuries, demonstrate long-term adjustment comparable to normative values of standard psychometric measures. Only 20% to 30% of pediatric burn survivors demonstrate moderate to severe behavioral problems (6, 7, 8, 9). This lack of observable psychopathology does not equate to a happy or easy adjustment (10,11). When competence (comprised largely of socialization skills) is evaluated, another 20% to 30% show mild to moderate diminished competence. When both behavioral problems and competence are assessed, approximately 50% of each sample indicates at least mild deficits in competence and/or elevated behavioral problem scores (12). The difficulties of most pediatric burn survivors are not obvious. In a recent study examining psychological adjustment of 50 adolescents identified as “troubled” on a standardized screening instrument, 52% of the sample assessed 10 years postburn had developed symptoms meeting criteria for psychiatric diagnoses. Of those who did, the most frequently occurring diagnoses (36%) were anxiety disorders, especially social phobia and separation anxiety, which often go unnoticed by others or are known only to the individual’s closest confidantes. These and other data (10) suggest that while most burn survivors appear to be doing well, they may be suffering internally. They develop the public persona of a person doing well much of the time, especially in familiar situations. They may also feel a sense of well-being. However, like all people, they also have a private persona, a part of themselves that is shared selectively with people they trust. The private persona of a burned child is sensitized to looking “different” and is anxious about being rejected, teased, or ridiculed. These private feelings vary in their saliency and are situation-specific. For example, a child may feel comfortable and confident in a group of other burned children, but feel terrified at the prospect of walking into a classroom of unfamiliar, unburned children.

Factors Associated with Positive Adjustment

Postburn adjustment has neither been predicted by characteristics of the burn itself, nor is there clear evidence that burn size or location is related to quality of adjustment (13), although some have reported visible disfigurement to be associated with poorer adjustment (14, 15). The most significant determining factor of psychosocial adjustment for pediatric burn survivors appears to be family support (9,16, 17). For the older child or adolescent, support received from peers is also important (14). Two personality characteristics, extraversion and social risk taking, are important influences on long-term outcomes (15). In one study, high extraversion and social risk
taking, together with the family characteristics of high cohesion and low conflict, accounted for 80% of the variance between well-adjusted and poorly adjusted adolescent survivors of pediatric burns (17).

LONG-TERM DIFFICULTIES FOLLOWING PEDIATRIC BURNS—SURVIVORS AS YOUNG ADULTS

The ultimate goal of pediatric burn care, beyond survival and functional restoration, is to restore the quality of life and the potential for productive adult lives. We recently examined the success of 101 survivors of childhood burns between the ages of 18 and 28. Their mean burn size was 54% TBSA, averaging 14 years postinjury. By several objective criteria (e.g., educational achievement and employment) these young adults were doing well. Examination by a physical therapist found them to be without significant impairment, capable of self-care and independent living. Overtly, the burn survivors appeared to be functioning satisfactorily in their lives. However, they differed significantly from the nonclinical reference groups in several psychological and emotional areas. Burned males reported significantly more somatic complaints; burned females reported not only significant elevations in somatic complaints, but also greater withdrawal, more thought problems, and more aggressive and angry behavior (18, 19), supporting findings that appearance impairment is a greater source of distress and has stronger impact for females than for males (20, 21, 22).

Burn survivors appeared to feel adequate self-worth within the context of family and friends. Outside those arenas, they expressed lowered self-esteem manifested through anxiety and withdrawal as well as intrusive thoughts and difficulty with concentration. Burned males and females indicated that they were acutely aware of their bodies and felt that they make poor first impressions when interacting with others.

A high percentage (46%) of young adult survivors had significant personality disorders, a finding not found in our studies of younger children and adolescents. Individually administered standardized interviews revealed a high (44%) incidence of current psychiatric diagnoses among this sample of adult survivors. As with the adolescent sample, anxiety disorders were the most common diagnoses for the young adults.

These results indicate that a significant number of young adults who survived severe burn injuries as children suffer major mental illness likely complicated by their injuries and resultant scars. Moreover, many others without major mental illness are distressed in social and interpersonal situations, hampered by keen awareness of their disfigurement (23). The “illness” or distress may be managed in a way that makes it invisible to all but those individuals closest to them; and the commonly reported withdrawal behaviors of burn survivors limit the numbers of people in that category. Their behaviors also impede the opportunity to have positive, corrective experiences without external therapeutic assistance. Notably, most survivors in the study sample were not involved in psychological or psychiatric treatment, and most would have gone unnoticed as needing help except by professionals who were sensitized to their experiences.

Long-Term Sequelae for Burned Children

The most significant limitations on the long-term quality of life for the pediatric burn survivor seems not to be functional impairment (24), but rather anxiety and social impairment in relating to others. The gestalt of disfigurement, unhappiness with appearance, stigmatization, social anxiety, maladaptive coping, and social discomfort is more likely to result in significant long-term impairment than the physical results of severe burn injuries (25). Physical impediments of burn scar contractures,
amputations, diminished hearing and/or eyesight do not prevent burn survivors from performing activities required for self-care (8). But coping with isolation related to disfigurement requires skills and confidence many survivors never achieve. For these individuals, social and emotional challenges during childhood and adolescence lead to long-lasting anxieties, fear of new social settings, and decreased self-esteem.

Survivors’ inhibitions in taking interpersonal initiative are reinforced by rejecting or demeaning attitudes of others. This cycle of appearance distinction, anxiety, and withdrawal to avoid rejection creates barriers to the success of many burn survivors. Researchers are increasingly focused on stigmatization, dissatisfaction with appearance, social anxiety, and development of interventions to assist survivors in coping with these social obstacles (26, 27).

Body Image Dissatisfaction

Body image is multidimensional, including self-perceptions and expectations of how others evaluate appearance. Beliefs about one’s strength, physical sensations, sexuality, movement, facial features, and physical boundaries are integral (28). Burn survivors may experience alterations in all of these areas. Survivors rate their unusual appearance and others’ responses as most salient to how they adjust (1). Developmental stage impacts body image throughout childhood and, thus is assumed to be the same for burned children (29). Whether gender contributes differentially to the effect of burn on body image is unclear (1,30).

Most of the literature on body image of the burned child is based on clinical observation with scant empirical data. The paucity of studies in this area reflects the difficulty in assessing relevant aspects of body image in burned children. Lawrence et al. have developed the Satisfaction With Appearance Scale (SWAP), which examines the degree to which appearance affects interpersonal relations and satisfaction with specific areas of the body (31). Validated for older adolescents (16 and over) and adults, it appears to be appropriate for preteens as well, and plans are underway at our institution to develop a version for young children.

Stigmatization

According to Goffman (32), the original Greek word stigma referred to bodily signs designed to expose something unusual and bad about the moral status of the individual who bore the signs. Stigmatization has retained a similar purpose of separating some individuals from larger society. Burn survivors often relate experiences in which they feel discredited by others because of their scars. The stigmatizing behaviors may be obvious such as staring, teasing, or bullying; or they may be subtle such as avoiding eye contact, ignoring, or expressing pity (33).

Bull and Rumsey hypothesized that experiencing stigmatization has three specific effects on people with appearance distinctions: poor body-esteem, a sense of social isolation, and a violation of privacy effect (34). This refers to the inability of the person to be anonymous, without undue attention. The burned child can rarely be anonymous; even the act of ignoring is a form of recognition and rejection. Sometimes the extraordinary attention is meant to be positive, but is nonetheless intrusive and dehumanizing. One young woman, whose survival and accomplishments had received a great deal of public praise, described her experience when she attended her first class at a large university in a city near her home. Several people greeted her, calling her by name; but she had no idea who they were. She fled, dropping out of school for the semester. She explained that she felt she had been performing to live up to her reputation as a “wonder” for years; and that, even in a setting where she knew no one, she already felt pressured to be an example to the world.

Social Anxiety

Social anxiety is an important factor in social impairment and emotional functioning among nonclinical populations of children and adolescence. Children who are rejected or neglected by their peers report substantially more social anxiety than their accepted classmates (35). Those with high social anxiety perceive themselves as less socially accepted and report lower levels of global self-esteem compared with less socially anxious peers (62). Among middle-school students, high levels of social anxiety at the beginning of the school year have also been found to predict low levels of companionship and intimacy in friendships during the school year (36). Not all children with social anxiety develop psychopathology; levels of social anxiety appear to be important risk markers and may help to differentiate clinically anxious children with and without impairments in their social functioning (37). As yet, there are no published studies of social anxiety in the adaptation of burned children. However, given the findings related to adolescent and young adult burn survivors, such investigation is imperative for early identification of risk for developing more serious psychopathology.

Social Learning

Social learning theory suggests that diminished social competence, increased behavioral problems, and anxiety may be related to maladaptive coping techniques that the burned child has utilized to deal with disfigurement. Social learning theory emphasizes that the individual forms a vision of “self” and “reality” through reciprocal interaction (i.e., the impact of the individual upon his environment and vice versa) and feedback (38). People’s behavior determines aspects of their environment to which they are exposed and to which they attend; and their behavior is, in turn, modified by that environment. Based on learned preferences and competencies, humans select with whom they interact and in which activities they participate. Thus, the individual’s behavior determines which of many potential environmental influences come into play.

Humans evoke reactions from the social environment as a result of physical characteristics, such as age, race, sex, and physical appearance. One’s interpretations of the reactions of the social environment feed into concepts of “self” and expectations of the future. The individual develops “cognitions,” for example, beliefs, values, expectations, through interactions with the social environment. These cognitions guide behavior. Cognitions change as a function of maturation and experience, but without corrective experience, ideas do not change. Beliefs or expectations that served the person well historically may, over time and in new situations, become maladaptive unless the person learns to adapt their beliefs and behaviors to match new experiences.

Clinical Example

In order to understand how these theoretical constructs apply to burned children, it is helpful to imagine a hypothetical burned boy who leaves the hospital in bandages and splints. He returns to school, in spite of his parents’ anxieties, feeling timid and anxious because he knows his body looks and functions differently than in the past and differently from others’ bodies. His parents’ anxieties affirm his own fears. In the school cafeteria, he notices that some of the children stare at him, but look away when he looks at them. He interprets that behavior as indicating that he looks like a “freak.” When he walks by those children, one of the boys says “Hey, Freddy” referring to a burned villain in a horror movie. The burned child perceives that response as further evidence that he looks like a monster. The child begins to incorporate this feedback into his self-image. With recurrent similar
experiences, the child is likely to misinterpret all looks from others as related to his appearance without considering other possible explanations (such as his own perceptible misery). Because he cannot change his appearance and does not know how to decrease the discomfort of others (which he interprets as evidence of his own worthlessness), he may well decide that he should not approach people whom he expects to be uncomfortable with him. He becomes fearful of approaching anyone except his most trusted friends and family. His mother, wanting to protect him, asks for a homebound teacher so he will not have to interact with others. This affirms his beliefs that others will hurt and reject him. The more he avoids others, the more his dysfunctional beliefs are unchallenged; the more he refuses to interact with others, the more others exclude him.

The child may decide to stay away from other people whenever possible; he may decide to avoid situations in which he is likely to call attention to himself; or he may decide to attack others before they can hurt him. This hypothetical child will develop strategies to maintain, to the degree possible, his own comfort. These strategies may facilitate successful interactions with others, but they are just as likely to work against his adjustment. The more strategies the child develops and the more helpful feedback he receives, the more likely he is to identify strategies that are effective in social interactions. Without helpful feedback and/or a variety of coping techniques, the child develops a feedback loop of social anxiety that may become disabling. If the burned child chooses a strategy of striking out at others to protect himself, he would be called a “behavior problem”; as that role became integral to his self-concept, he would feel angrier and increasingly negative about himself. Thus, he would strike out more, eventually perhaps meeting criteria for the psychiatric diagnosis of conduct disorder.

THE FAMILY’S INVOLVEMENT

Burn injury and its treatment are family affairs from the beginning, particularly for pediatric patients. The family unit is disrupted and traumatized. The premorbid characteristics of the family are important in predicting the course of recovery. At the time of injury, family members face not only the life-threatening event to the child but other losses as well. They are conflicted by desire to provide love and support while mourning the loss of their imagined perfect child. In many instances, the fire has taken the home, loved ones, pets, and/or property. Families may be facing the loss of a wage earner and/or financial ruin while caring for the patient. Even at hospitals where medical care is free of charge to the families, attendant costs of lost wages, travel expenses, and special arrangements to care for the patient postdischarge can be devastating.

Family members play a critical role in long-term care and rehabilitation of the burned child and are often extended members of the treatment team. Family members can be extremely helpful in supporting the best interests of the child during the difficult months or years ahead. But even well-adapted and healthy families have difficulties, and a serious injury exacerbates pre-existing problems (70). Identification of psychosocial strengths and vulnerabilities of family members, including those that contributed to the burn injury, help the team to develop a treatment plan that will facilitate adjustment of the child and the entire family unit.

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