Patient narratives in an online hernia peer-support community: a qualitative netnographic analysis

This study aimed to explore how individuals with hernia engage with online peer-support communities and how their shared narratives reflect the experience of living with and seeking treatment for hernia.

A qualitative netnographic approach was employed, analysing posts from a large online hernia support group with approximately 8,500 members across more than 10 countries. The group was selected following scoping of alternative online communities because of its size, activity, heterogeneity, and public accessibility. A purposive sample of 26 high-engagement discussion threads comprising 936 comments was analysed using Braun and Clarke's reflexive thematic analysis, involving iterative familiarisation, inductive coding, theme development, and refinement. Saturation was monitored throughout, and data collection concluded when no new dominant themes were identified.

Four inductively derived themes were identified: Surgical Experiences and Outcomes, Patient Concerns and Fears, Healthcare System and Access, and Coping and Support. Narratives described mesh-related anxiety, fear of recurrence, mistrust in healthcare providers, structural barriers to care, body-image concerns, and uncertainty surrounding treatment and recovery. Mesh discussions included concerns about safety, long-term complications, and living with an implanted material, alongside positive experiences of mesh repair. Participants also demonstrated active health-information-seeking behaviours, including peer validation, appraisal of surgical options, and self-advocacy. A visual summary of findings is included (see accompanying infographic).

Online patient narratives offer rich insight into the lived experience of hernia and demonstrate how peer communities contribute to information seeking, support, and treatment-related discussion. These exploratory findings identify issues relevant to patient-centred communication and future outcomes research and suggest value in recognising the digital patient as an active information-seeker and co-producer of meaning.