Abstract
OBJECTIVE: Sjögren's disease (SjD) can have a major impact on sexual functioning, but this topic has received limited attention in research and clinical practice. This qualitative study investigated how SjD affects sexual experience and functioning in both women and men. METHOD: Reflexive thematic analysis was performed based on in-depth interviews with patients with SjD. Sexual functioning was measured using the Female Sexual Function Index and International Index of Erectile Function questionnaire. RESULTS: 11 female and 9 male patients with SjD, aged between 24 and 65 years, were included. According to questionnaire scores, 64% of female and 67% of male participants reported sexual dysfunction. In both sexes, six themes were identified as important in sexual experience and functioning: chronic stress in life, symptoms of SjD (affecting sexual experience), invisible suffering of SjD, impact of illness perception on coping strategies for sexuality-related symptoms, quality of (sexual) partner relationship and taboo of sexuality. These themes interact with each other and together shape the sexual experience. CONCLUSION: SjD plays a crucial role in the quality of sexual experience. Many participants reported an unmet need for support, advice and treatment of sexuality-related symptoms related to SjD. The themes generated provide valuable insights into understanding the factors that shape sexual experience and underscore the importance of addressing sexuality-related symptoms as part of holistic care for patients with SjD. Due to the complexity of sexual experience and functioning, future research should focus on the patient as a whole person, and not solely on physical sexual functions.