Shedding the layers: Exploring the impact of burn camp on adolescent campers' body image

The purpose of this qualitative study is to explore the impact of the burn camp experience, as it relates to body image, on participating burn-injured adolescents. Focus groups were conducted with 52 burninjured adolescents at three burn camps in geographically diverse regions of the US. Data revealed that burn camp is a place where they feel a sense of belonging and acceptance, a place where they don’t have to hide their bodies, and a place where they can learn to integrate their scars into their overall body image in a positive way. Implications of this study include highlighting the contributions that burn camps may provide in helping burninjured adolescents learn to cope with the devastating disfigurements that often accompany their injuries. Shedding the layers 3 Shedding the layers: Exploring the impact of burn camp on adolescent campers’ body image Body image, already a very fragile concept for adolescents, can become increasingly salient and intensely negative for those who bear the physical scars of a disfiguring burn injury. Because adolescence is a time characterized by change, body images can be distorted even when disfigurement is not an issue (Cobb, 2001; Gullotta, Adams, & Markstrom, 2000). Body image is a part of the concept of self -a concept formed from sensory and social experiences, which include others’ reactions to one's body. These reactions often play a significant role in determining how an individual feels in relation to his or her body (Cobb, 2001; Gullotta et al., 2000; Jones & Bloomberg, 2000). Thus, a person’s selfimage is a reflection of a combina tion of one’s own evaluation as well as one’s perceptions of others’ attitudes towards a particular trait or physical characteristic (Cobb, 2001; Gullotta et al, 2000). Cultural messages in society are clearly conveyed and reinforce that physical appearance is highly valued, even revered. Personality development, social relations, social perceptions, and social behavior are profoundly influenced by these messages and are especially noticeable when there are extremes in physical appearance (Brumberg, 1997). Adolescents, who are developmentally in the formative process of understanding who they are and how they relate and fit in to the world around them as their bodies undergo dramatic shifts, are particularly vulnerable to these influences. Adolescent burn survivors must face this process head-on as they are formulating their self-concept based in large part on the messages they receive from the external world as they reconcile their image of themselves. Both the perceived and actual context of an experience are important to adolescent development (Cobb, 2001). Shedding the layers 4 It is reported that the emotional recovery process for burn-survivors, whose physical appearance may be irreparably altered, often involves depression, anxiety, and low self-esteem. (Williams, Davey & Klock, 2003). The situation is ripe for individuals with disfiguring injuries to develop a negative body image that acts as a schema with which they view the world and within which they operate. As Cash (1996) notes, social scrutiny and bodily exposure often serve as triggering events which activate this schema, leading to hyper-vigilance, negative interpretations of the behavior of others, attempts to conceal the body, avoidance, and other compensatory actions. Though there is a wide range of personal reactions to physical disfigurement, recent studies have identified common elements that are shared between individuals who have skin diseases, such as vitiligo and psoriasis, and people who are burninjured or have disfigurement resulting from head and neck surgery (Dropkin, 1999; Kent, 2000; Kent & Keohane, 2001; Papadopolous, Bor, & Legg, 1999). Because of their injuries, they are challenged to restructure their self-concept and value systems by placing greater importance on characteristics other than physical appearance. In one of the few studies directly exploring the self-esteem in burn-injured adolescents in relation to their scars, the researchers interestingly found their sample to exhibit similar or even higher feelings of self-worth as compared to their peers in general. However, in the area of self-worth as it related to physical appearance, the burninjured adolescents were significantly lower in self-esteem (Robert, Meyer, Bishop, Rosenburg, Murphy, & Blakenly, 1999). The negative thoughts about disfiguring burn injuries can lead to what is known as “body image distress” (BID). These thoughts can be realistic (e.g., “People stare at me because of my burns”) or distorted (e.g., “Everyone finds me repulsive because of my burns”) (Heinberg, Fauerbach, & Kammerer, 2002). Pilot research on individuals with burn injuries suggests that Shedding the layers 5 22% score in the severe range for BID, though none of the studies have measured BID directly. Normative data examining BID and burn survivors does not exist (Heinberg, Lawrence, & Fauerbach, 2002). Children with disfiguring conditions often try to protect the complete attrition of sense of self by holding on to the mental image of a “normal” body. They often fluctuate between their thoughts of their “old self” and the reality of the “new self” (Blakenly & Robert, 1998). Social Support Researchers consistently report that social support is a strong predictor of emotional adjustment in children who have survived burn injuries (Barnum, Snyder, Rapoff, Mani, & Thompson, 1998; Blakeney & Robert, 1998; Holaday & McPhearson, 1997). Social support has been inter-related with the concept of hope, a positive psycho-social outcome that has been reported to be a powerful antidote among children who have received physical and psychological scars as a result of a burn injury (Barnum et al, 1998). Research indicates that burninjured individuals who receive social support, especially from friends, have a more positive body image, as well as greater self-esteem and less depression (Jones & Bloomberg, 2000; Orr, Reznikoff, & Smith, 1989). Arenas that offer burninjured youth opportunities to develop social supports in a safe environment are camps specifically designed for burn-injured children and adolescents. The burn camp concept was born almost 20 years ago in response to the needs of burninjured children who lacked appropriate mental health resources and support. The goal of these first burn camps was “to provide a therapeutic milieu away from the hospital environment where staff and patients could join together in fun and confidence-building activities that are geared toward facilitating a higher level of adaptation” (Doctor, 1992, p.71). Since that time, burn Shedding the layers 6 camps have developed in countries around the world to provide a setting for burn-injured children to enjoy support and acceptance in a recreational setting. The camps appear to share a common goal: to provide burninjured children a safe and accepting environment while providing challenges in a variety of activities and interactions that are designed to enhance selfesteem. Building self-esteem, and the concomitant process of improved body image, is embedded in the belief that success in one area will translate into success in other “everyday” areas of the burninjured child’s life, such as home and school (Biggs, Heinrich, Jekel, & Cuono, 1997; Doctor, 1992). A review of the literature revealed a scarcity of studies on the emotional and social aftermath of disfiguring conditions, such as dermatological diseases and craniofacial abnormalities, and disfigurements resulting from traumatic events, such as burns as it impacts adolescents. This study seeks to contribute to this gap by exploring the impact of the burn camp experience on the body image of adolescent burn survivors. Method An exploratory, qualitative research design was utilized to examine body image issues among adolescents who attend burn camp. A qualitative design facilitates understanding of an experience or phenomenon from the perspectives of the individuals who have “lived” it. Participants’ words, rather than numbers, constitute the data in a qualitative study and are used to convey the meaning that individuals attribute to their experience. This study employed a descriptive qualitative design to explore the perceptions of burninjured adolescents in regard to their experiences at burn camp. This study, conducted by a team of two social work faculty members and two social work graduate students, was part of a larger research project that explored the impact of the burn camp experience on the adolescents who have attended multiple Shedding the layers 7 years at camp. Three burn camps were investigated in different geographical areas of the US, one in the Southeast and two in the West. The research team actively engaged in the activities at all three camps in an effort to build rapport and develop a deeper understanding of campers’ perspectives. Participants The total nonrandom sample of 52 burninjured adolescents (33 males; 19 females) included campers between the ages of 13-20 (M=16.3). The participants were predominately Caucasian (n=37), with six participants identifying as African-American, three as Hispanic, one as Asian, one as Caucasian/African-American, one as Caucasian/Hispanic, and one as AfricanAmerican/Native American. Two participants did not identify their race/ethnicity. The age at which participants had been burned ranged from 2 months to 14 years of age. The number of years participants had been attending camp ranged from 1 to 12 years, with a mean of 6.14 years, indicating that the majority of campers were very familiar with the burn camp experience. Information about the study, which was approved by the university with which the research team is affiliated, was included in camp registration packets. Parents who were willing for their child to participate signed a consent form describing the purpose of the study, a description of what their child’s participation