Perceptions of women with systemic lupus erythematosus undergoing high-risk prenatal care: A qualitative study

Abstract

Background: Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease that often leads to situations of harm to the mother-fetus binomial. Given the potential for complications and morbidities in these pregnant women, it is essential that a multidisciplinary team be involved in pregnancy planning, as well as monitoring the course of the pregnancy and the postpartum period. Owing to the imminent risks of disease worsening along with consequent disabilities, these women may experience psychological and psychosocial impacts conflicting with the psychological demands of pregnancy. Objective: To understand the meanings attributed to pregnancy by women with SLE. Design: A qualitative design with face-to-face interview following a semi-structured script of open-ended questions. Setting: A specialized outpatient clinic where during prenatal care, women with stable disease undergo scheduled appointments. Participants: The sample was intentionally composed of women visiting a specialized outpatient clinic from July 2017 to July 2018. The participants (N = 26) were interviewed in depth, with no refusal. Thematic analysis according to the 7 steps of qualitative analysis was conducted using NVivo 11. Findings: Four categories were identified: (1) unplanned pregnancy and nonuse of contraception, (2) feeling healthy despite a doctor’s warning of the disease worsening because of pregnancy, (3) joy coupled with fear of the future and pregnancy, and (4) self-perception and straight perception. Conclusions: The experiences of pregnant women with SLE are permeated by ambiguous feelings. These women feel healthy because they can bear a child despite the chronic disease diagnosis and, at the same time, experience fear and insecurity owing to the imminent possibility of disease-related disabilities and limitations. They especially wish to experience motherhood, and they strive for safety and support. Implications for practice: Health teams must be structured to welcome and advise these women in planning relationships and pregnancy, as well as choosing the best contraceptive methods and making optimal reproductive decisions. The development of strategies to deal with changes in the perinatal period may be helpful, as these women are willing to take care of themselves.