The following is a summary of “‘I turned in my man card’: a qualitative study of the experiences, coping styles and support needs of men with systemic sclerosis,” published in the June 2023 issue of Rheumatology by Flurey, et al.
For a study, researchers sought to explore the experiences, coping strategies, and support preferences of men with systemic sclerosis (SSc). While previous research has highlighted the more severe clinical phenotype and reduced survival of men with SSc compared to women, there was a lack of psychosocial studies specifically focusing on this population.
The international qualitative research study involved seven focus groups comprising 25 men with SSc, with participants from the United States and the United Kingdom. Transcripts of the focus group discussions were analyzed using reflexive thematic analysis to identify key themes.
Three overarching themes and one underpinning theme emerged from the analysis. The theme “impact of SSc on masculinity” revealed that men experienced challenges in their roles and activities, highlighted issues related to sex, intimacy, and erectile dysfunction that clinicians may overlook, and reported struggles with their masculine self-image. The theme “dealing with SSc” encompassed the strategies of always being prepared, becoming an expert in managing the disease, and balancing priorities in responsibilities, activities, and symptom management. The theme “support for living with SSc” revealed that men were selective in discussing their condition, reluctantly accepted help, and preferred the type of support they desired. The underpinning theme, “facing an uncertain future,” reflected participants’ varied responses, with some choosing not to focus on the unpredictable future while others expressed worries about disease progression.
The study provided novel insights into the experiences of men with SSc, highlighting the impact of the disease on their masculine identity and roles. The findings underscored the importance of addressing issues related to sex, intimacy, and erectile dysfunction, which are often overlooked in clinical discussions. The study also suggested that men may downplay the emotional impact of their condition while accepting practical help. Future research should focus on developing self-management interventions tailored to the needs of men with rheumatic diseases, incorporating both disease-specific and standard core components.
Source: academic.oup.com/rheumatology/article/62/6/2160/6751807