PS11 A qualitative study on the views of adults with psoriasis regarding social media representation and awareness campaigns

Abstract

Psoriasis is a chronic inflammatory skin condition often associated with stigmatization and a significant psychosocial burden. Social media now plays a central role in how people with psoriasis encounter representations of their condition, seek community and navigate information. However, little is known about how this content affects people with psoriasis on a personal and emotional level. This study explored (i) how individuals with psoriasis perceive social media depictions, (ii) the psychosocial impacts of this content and (iii) how awareness campaigns can be better designed to reduce stigmatization. A qualitative study was carried out, using semistructured interviews with 13 adults with psoriasis. Participants were recruited through social media using purposive sampling. Interviews were conducted online and analysed using reflexive thematic analysis. Three overarching themes and interconnected subthemes were developed. The three themes that captured the complex emotional experiences of engaging with psoriasis-related SM were as follows. (i) Seeing and being seen – social media as community, visibility and self-perception. Participants described social media as a source of digital kinship, belonging and validation, but also as a space of algorithmic bias, comparison and vulnerability. (ii) Authenticity and authority – the emotional labour of trust online. Trust required continual evaluation of credibility, emotional sincerity and commercial intent. While lived-experience content was highly valued, misinformation and predatory marketing generated fatigue, frustration and disillusionment. (iii) Reclaiming psoriasis narratives – from deficit to collective empowerment. Participants increasingly reframed psoriasis as part of their identity rather than a deficit. They advocated for cocreated campaigns combining clinical accuracy with authentic storytelling, favouring ‘day-in-the-life’ content that humanized psoriasis and countered stigmatization. Social media plays a pivotal role in how people with psoriasis make sense of their condition. Awareness efforts should prioritize cocreation, authenticity and diverse representation, while healthcare professionals should integrate discussions about social media use into holistic psoriasis care to support digital literacy and reduce vulnerability to stigmatization and misinformation.