Managing the stigma: A pilot study exploring body image experiences and self-presentation among people with spinal cord injury


Much of the research in body image has explored able-bodied female adolescent and college students' experiences, thus limiting the breadth of understanding of body image. Therefore, using a modified constructivist grounded theory, the purpose of the present study was to explore body image experiences in people with spinal cord injury. Nine participants (5 women, 4 men) varying in age (21-63 years), type of injury (C3-T7; complete and incomplete), and years post-injury (4-36 years) were recruited for a one-on-one interview. After rigorous analysis and constant comparison of the transcripts, the following main categories were found: appearance, weight concerns, impact of others, body disconnection, body nostalgia, drive for normalcy, hygiene and incontinence, physical activity, and self-presentation. The relationships between the main categories were conceptually linked and formed into a preliminary body image model. Although body image experiences varied from very negative to very positive, overall, the majority of participants disclosed more negative body image experiences. Body image was seemingly represented by appearance (the core category) and all body image experiences were encompassed by self-presentation (concerns and tactics). Unexpectedly, participants discussed engaging in specific self-presentational tactics. For example, it was important for most participants to be perceived as attractive, independent, physically active, and 'normal' (i.e., blend into the dominant able-bodied society) to reduce experiences of stigma. Therefore, participants described engaging in specific strategies in order to portray this image (e.g., use clothing to enhance or conceal appearance aspects). Lastly, participants disclosed experiencing specific self-presentational concerns such as incontinence which influenced participation in health-related activities such as exercise. Findings from this study have direct implications for hospital, rehabilitation and exercise settings. Lastly, since self-presentation emerged as an unexpected finding, results from this study lean support towards employing grounded theory methodologies as they may inherently expose unexpected avenues for future research.