The man-in-the-moon face: a qualitative study of body image, self-image and medication use in systemic lupus erythematosus: Table 1

Abstract

Body and self-image are important issues for individuals with SLE. Yet participants in our study generally felt that their health care providers did not give enough consideration to their concerns over the outward appearance effects of both the disease and its treatment.

Being in a standstill‐of‐life: women's experience of being diagnosed with systemic lupus erythematosus: a hermeneutic‐phenomenological study

“…The main finding was that life came to a standstill during an often prolonged diagnostic phase. The existential aspect of being in the diagnostic phase of SLE has rarely been brought to attention in previous research, although our study agrees with previous studies which have documented aspects of this phenomenon or described the consequences of being diagnosed with SLE or related chronic illnesses (13,19,(38)(39)(40)(41). The discussion will reflect empirical studies from comparable chronic illnesses when needed as well as philosophical and related classical literature to deepen the interpretation.…”

“We're stuck with what we've got”: The impact of lipodystrophy on body image

“…Descriptions included feeling inferior around other women and falling short of people's expectations of what a woman should look like. Similar feelings were reported in a study of patients living with systemic lupus erythematosus conducted by Hale, Radvanski, and Hassett () in which the female participants reported not they did not live up to their views of what a woman should look like. Although the appearance of women in the media is often artificial, these may be the images that some women are comparing themselves against and which can lead to dissatisfaction with their own appearances (Want, ).…”

Concerns of patients with systemic lupus erythematosus and adherence to therapy – a qualitative study

“…As in our study, patients revealed worries about appearance and weight, which they often related with the use of steroids, and also described “creative non-compliance”. In that study, participants “felt their care providers did not give enough consideration to their concerns” about the effects of lupus and its treatment on the appearance 20. In contrast, although participants in our study appeared to be happy with the relationship they had with their rheumatologists, many of them tended not to share their concerns.…”

“…This inhomogeneity is usually a characteristic of samples in qualitative studies, as it may provide richer information. In fact, these kinds of studies are not usually expected to produce generalizable results as would be the case with quantitative research 20,24. Instead, they give us important information that allows us to understand this group of patients better and to generate concepts that can be transferable and used in clinical practice or in future studies.…”