The impact of Sjögren’s syndrome on sexual functioning and intimate relationships: development of management recommendations

Abstract

Background: Sjögren’s syndrome (SS) is an autoimmune rheumatic disease that attacks and damages glands that secrete moisture, leading to oral and ocular dryness. Females with SS may also experience vaginal dryness, which affects their sexual functioning and intimate relationships. However, the literature exploring these disruptions is minimal and lacks the perspective of women with SS, as well as a lack of guidance on managing these issues from both an individual and clinical level. This thesis aims to explore the impacts of SS on female sexual function and intimate relationships, particularly the lived experiences, and develop evidence-based recommendations for managing sexual alterations for individuals with SS and healthcare professionals (HCPs).

Methods: First, a systematic scoping review explored the existing evidence on female sexual functioning in SS. Second, thematic analysis of conversations from an internet forum provided insights into the lived experiences of sexual alterations in females with SS. Third, a mixed methods study comprised of a cross-sectional online survey and one-to-one interviews with 15 women with SS was conducted to gain a comprehensive understanding of the lived experiences and commonality of certain sexual experiences in SS. The findings from all studies were compiled, and recommendations for managing female sexual alterations in SS were developed.

Findings: This thesis shows that SS not only disrupts physiological aspects of sexual function but also impacts an individual’s personal and sexual identity, mental and emotional wellbeing, relationship dynamics, and the partner. These findings are all novel contributions to the literature. It also highlights the lack of support from HCPs and an absence of resources available for women with SS to access information and guidance on self-managing physiological changes in sexual function and the subsequent psychosocial impacts.

Conclusion: The findings of this thesis bring attention to an understudied and overlooked aspect of living with SS. The evidence-based recommendations can be used by HCPs to understand better the challenges faced by women with SS and to provide more personalised support to assist with sexual alterations. Moreover, women with SS can use the recommendations to advocate for better support from HCPs and can utilise the strategies recommended by other women with SS. Lastly, researchers can use the findings of this study to develop interventions targeting both the sexual alterations and the broader psychosocial impacts experienced by women with SS.

Date of Award	23 May 2024
Original language	English
Awarding Institution	Northumbria University
Supervisor	Katie Hackett (Supervisor), Vincent Deary (Supervisor) & Tracy Collins (Supervisor)