Flurey, Caroline A;
Pauling, John D;
Saketkoo, Lesley Ann;
Denton, Christopher P;
Galdas, Paul;
Khanna, Dinesh;
Williams, Adrian;
(2022)
"I turned in my man card": A qualitative study of the experiences, coping styles and support needs of men with systemic sclerosis.
Rheumatology
, Article keac585. 10.1093/rheumatology/keac585.
(In press).
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Abstract
OBJECTIVES: Men with Systemic Sclerosis (SSc) have a more severe clinical phenotype and reduced survival compared to women. No previous psychosocial studies have focused solely on men with SSc. This study aimed to explore experiences, coping strategies, and support preferences of men with SSc. METHODS: An international qualitative research study comprising seven focus groups (3 USA, 4 UK) of 25 men with SSc. Transcripts were analysed using reflexive thematic analysis. RESULTS: Three overarching themes and one underpinning theme were identified. In "impact of SSc on masculinity," the men described an "impact on roles and activities," reported "sex, intimacy, and erectile dysfunction" as a salient issue that may be overlooked by clinicians, and experienced challenges to "masculine self-image". "Dealing with SSc" meant "always being prepared", "becoming an expert", and "balancing priorities" in responsibilities, activities, and symptom management. In "support for living with SSc" men were selective in "(Not) talking about SSc", would "(reluctantly) accept help", and described "preferences for support". Underpinning these experiences was "facing an uncertain future" with some participants preferring not to focus on an unpredictable future, and others worrying about disease progression. CONCLUSION: These novel data suggest SSc impacts male patients' masculine identity and roles, and although they will accept practical help, they may mask the full emotional impact. Sex and intimacy are important overlooked issues with erectile dysfunction often not discussed at diagnosis. Further research should develop a self-management intervention for men with rheumatic diseases with a combination of disease specific and common core components.
| Type: | Article |
|---|---|
| Title: | "I turned in my man card": A qualitative study of the experiences, coping styles and support needs of men with systemic sclerosis |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1093/rheumatology/keac585 |
| Publisher version: | https://doi.org/10.1093/rheumatology/keac585 |
| Language: | English |
| Additional information: | © The Author(s) 2022. Published by Oxford University Press on behalf of the British Society for Rheumatology. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, [br]distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com |
| Keywords: | ‘erectile dysfunction’, ‘gender’, ‘masculinity’, ‘men’, ‘mortality’, ‘qualitative’, ‘quality of life’, ‘scleroderma’, ‘systemic sclerosis’ |
| UCL classification: | UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Inflammation UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10157680 |
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