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

Lizzy Winstone; Becky Mars; Jennifer Ferrar; Paul Moran; Ian Penton-Voak; Lydia Grace; Lucy Biddle

doi:10.2196/43840

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

JMIR Ment Health. 2023 Jan 31:10:e43840. doi: 10.2196/43840.

Authors

Lizzy Winstone¹, Becky Mars^{1

2}, Jennifer Ferrar³, Paul Moran^{1

2}, Ian Penton-Voak^{2

3}, Lydia Grace⁴, Lucy Biddle^{1

2}

Affiliations

¹ Population Health Sciences, University of Bristol, Bristol, United Kingdom.
² NIHR Biomedical Research Centre at the University Hospitals Bristol NHS Foundation Trust, Bristol, United Kingdom.
³ School of Psychological Science, University of Bristol, Bristol, United Kingdom.
⁴ Samaritans, Surrey, United Kingdom.

PMID: 36719729
PMCID: PMC9929729
DOI: 10.2196/43840

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.

Keywords: focus groups; lived experience stories; recovery; self-harm; self-help; web-based support.

©Lizzy Winstone, Becky Mars, Jennifer Ferrar, Paul Moran, Ian Penton-Voak, Lydia Grace, Lucy Biddle. Originally published in JMIR Mental Health (https://mental.jmir.org), 31.01.2023.