Investigating How People Who Self-harm Evaluate Web-Based Lived Experience Stories: Focus Group Study

Abstract

Background The positive and negative effects of interacting with web-based content on mental health, and especially self-harm, are well documented. Lived experience stories are one such type of static web-based content, frequently published on health care or third-sector organization websites, as well as social media and blogs, as a form of support for those seeking help via the web. Objective This study aimed to increase understanding about how people who self-harm engage with and evaluate web-based lived experience stories. Methods Overall, 4 web-based focus groups were conducted with 13 people with recent self-harm experience (aged 16-40 years). In total, 3 example lived experience stories were read aloud to participants, who were then asked to share their reactions to the stories. Participants were also encouraged to reflect on stories previously encountered on the web. Data were analyzed thematically. Results Overall, 5 themes were generated: stories of recovery from self-harm and their emotional impact, impact on self-help and help-seeking behaviors, identifying with the narrator, authenticity, and language and stereotyping. Conclusions Lived experience stories published on the web can provide a valuable form of support for those experiencing self-harm. They can be motivating and empowering for the reader, and they have the potential to distract readers from urges to self-harm. However, these effects may be moderated by age, and narratives of recovery may demoralize older readers. Our findings have implications for organizations publishing lived experience content and for community guidelines and moderators of web-based forums in which users share their stories. These include the need to consider the narrator’s age and the relatability and authenticity of their journey and the need to avoid using stigmatizing language.

Qualitative study of the impact on recovery of peer relationships between female inpatients during treatment for anorexia nervosa in the United Kingdom

“…Our study identified a positive “role‐modeling effect” of seeing others at a later stage in their recovery, which allowed participants to believe recovery to be a possibility, often for the first time. This has similarities to findings from the self‐harm literature: Winstone et al (2023) found that watching online positive recovery stories is helpful for lifting mood and inspiring hope for the future. Furthermore, patients closer to recovery were viewed by some as more popular, so there was a social pressure toward being able to join them, co‐existing with opposing pressure to pull back into an “anorexic” identity.…”

Investigating the impact of lived experience stories on self-harm, mood, and help-seeking intentions: an experimental study

“…Findings from the qualitative component (focus groups) of this mixed-method project suggested that lived experience stories can have a positive impact on readers, but that this effect may be moderated by age (23). In the protocol, we had specified that exploratory analyses would be guided by the qualitative results.…”

“…Lived-experience stories are often used on formal help sites as they are viewed as personal and engaging and can validate crisis for readers, while also offering reassurance that they are not alone in their struggle and that recovery is possible (13,22,23). However, there are several components which might influence whether a lived-experience story is perceived as helpful, unhelpful, or potentially harmful.…”

“…Stories appearing on websites run by charities and healthcare organisations usually include a personal narrative of help-seeking and recovery. However, the evidence supporting that these encourage help-seeking in the reader is limited (22,23). Further, the careful regulation of content might be perceived as overly censored and lead some to search for unrefined content in covert and riskier spaces (2).…”

Mental Health Practitioners’ and Young People’s Experiences of Talking About Social Media During Mental Health Consultations: Qualitative Focus Group and Interview Study

“…However, as the Royal College of Psychiatry report on young people's mental health and technology use also highlights, although it is essential for social media companies to address the issue of web-based risk, it is also important to support young people in engaging more safely with the web-based world and in a way that has a positive impact on their well-being [14]. Often unrecognized is the role social media plays in supporting young people's mental health by providing information, a sense of community, and emotional support [15][16][17][18][19]. However, the types of social media use are heterogeneous and can depend on whether the young person is an active or passive participant on social media; for example, findings suggest that passively looking at posts and images has a more problematic impact on mental health than active engagement [20].…”