Asim A Abbas, Natyra Xharavina, Jackie Bullock, Srinivas Chintapatla
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引用次数: 0
Abstract
Purpose: 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.
Methods: 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.
Results: 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).
Conclusion: 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.
期刊介绍：
Hernia was founded in 1997 by Jean P. Chevrel with the purpose of promoting clinical studies and basic research as they apply to groin hernias and the abdominal wall . Since that time, a true revolution in the field of hernia studies has transformed the field from a ”simple” disease to one that is very specialized. While the majority of surgeries for primary inguinal and abdominal wall hernia are performed in hospitals worldwide, complex situations such as multi recurrences, complications, abdominal wall reconstructions and others are being studied and treated in specialist centers. As a result, major institutions and societies are creating specific parameters and criteria to better address the complexities of hernia surgery.
Hernia is a journal written by surgeons who have made abdominal wall surgery their specific field of interest, but we will consider publishing content from any surgeon who wishes to improve the science of this field. The Journal aims to ensure that hernia surgery is safer and easier for surgeons as well as patients, and provides a forum to all surgeons in the exchange of new ideas, results, and important research that is the basis of professional activity.
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