JMIR Publications

ABSTRACT

Background:

The positive and negative effects of interacting with online content on mental health and especially self-harm, are well documented. Lived experience stories are one such type of static online content, frequently published on healthcare or third sector organization websites, as well as social media and blogs, as a form of support for those seeking help online.

Objective:

To increase understanding about how people who self-harm engage with and evaluate online lived experience stories.

Methods:

Four online focus groups were conducted with thirteen people with recent self-harm experience (aged 16-40 years). Three 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 online. Data were analysed thematically.

Results:

Five themes were generated: i) stories of recovery from self-harm and their emotional impact; ii) impact on self-help and help-seeking behaviors; iii) identifying with the narrator; iv) authenticity; v) language and stereotyping.

Conclusions:

Lived experience stories published online can provide a valuable form of support for those experiencing self-harm. They can be motivating and empowering for the reader, as well as having the potential to distract from urges to self-harm. However, these effects are moderated by age, and narratives of recovery may demoralise older readers. Our findings have implications for organizations publishing lived experience content, and for community guidelines and moderators of online forums in which users share their stories. These include the need to consider the narrator’s age, relatability and authenticity of their journey, and to avoid using stigmatizing language.