Session Title: Psychology/Social Sciences
Session Type: Abstract Submissions (ARHP)
Background/Purpose: Symptoms and treatment related to SLE are often outwardly evident. Patients with SLE cope with such external manifestations as joint swelling, rashes, scarring, loss of skin pigmentation, alopecia, facial changes (Cushingoid appearance) and overall weight gain. Despite findings that side effects affecting appearance are associated with poor medication adherence, body-image and self-image in general have received very little attention in the SLE scientific literature. The primary objective of this qualitative study was to learn more about the role of self-image and body image in SLE.
Methods: 15 patients with SLE underwent semi-structured interviews that were approximately one hour long. Interviews were audio recorded, transcribed verbatim and analyzed using Interpretive Phenomenological Analysis (IPA). IPA is a qualitative method that takes an idiographic approach, trying to understand the experience from an individual account, then building up to commonalities and differences when looking across cases. Themes for these interviews were identified and collected under major thematic headings.
Results: Our participants included 14 females and 1 male all between the ages of 22 and 57. Patients were ethnically and racially diverse (e.g., 53.3% African American, 13.3% Caucasian) and just over half were married (53.3%). Running throughout the interviews were the themes of the changed self, the battle for normality and being attacked by an unwanted physical enemy. It also became clear that it is the outward “cosmetic” effects of SLE that can cause the most distress for participants, quite apart from the internal effects with which they were coping. We found that the concepts of body-image and self-image were inextricably linked; body-image impacts self-image and when feeling negative about one, it’s hard to feel positive about the other. This was the daily challenge our participants faced. Often highlighted was how much they felt they had changed when talking about their body image, particularly in outward appearance. This was a topic that caused great distress as individuals remembered how they used to be. Sometimes this was expressed as looking in the mirror and not recognizing the person looking back, which suggests that not only did individuals experience a distancing from other people and valued social roles, they experienced a disembodiment from their own selves as well.
Conclusion: Patients reported that self-image and body image are adversely affected by SLE and these changes in perception can impact quality of life. Weight gain, Cushingoid appearance, hair loss and rashes were the most troubling manifestations.
A. L. Hassett,
D. C. Radvanski,
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/a-qualitative-study-of-self-image-and-body-image-in-individuals-with-systemic-lupus-erythematosus/