Overview and aims:
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 a frequently used static source of information and support on the websites of third-sector or health care organizations and can include user-generated content on social media. Stories published by more formal help sites, such as Mind or Samaritans, typically involve a personal narrative of help seeking and recovery.
Little is known about how people who self-harm use web-based lived experience stories and how this may shape their behaviour. With this in mind, we aimed to address the following research question—how do people who self-harm engage with, interpret, and evaluate lived experience stories accessed via the web?
Sample:
We conducted four online focus groups from June 2022 to July 2022, with a total of 13 participants, who were recruited from a related experimental study. Owing to the sensitive nature of discussions, we limited the number of participants to 4 per group and attempted to assign participants to groups with others of similar age. This was not possible for gender, as only 2 men returned the consent forms. Participants were aged 16-40 years (mean age of 24.5 years).
What did we do?
First, the focus group moderator shared on the screen and read aloud 3 examples of lived experience stories about self-harm, followed by group discussion.
The 3 example stories were created by combining extracts of real-life stories selected from different sources—including the websites of third-sector organizations, web-based forums, and personal blogs—to reflect a range of help-seeking circumstances. Each of the stories included a recovery narrative and did not include any graphic details of self-harm or encouragement of self-harm. Story 1 focused on self-help strategies and was written from the perspective of an individual aged 21 years. Story 2 did not explicitly report help seeking but conveyed a narrative of nonlinear recovery and a message of hope. Story 3 presented a journey of finding a therapist, medication, and social support. In the second and third stories, the age of the narrator was not specified.
The example stories were used to prompt discussion, but participants were also encouraged to think about and discuss their own experience and reflect on other lived experience stories they had encountered on health care or third-sector organization websites or on social media. Discussions included participants’ experiences of engaging with lived experience material on the web, their initial reactions to the example stories, specific aspects of stories (both in the examples and more broadly) that were supportive or not supportive, and the impact of reading lived experience stories on one’s own thoughts about help seeking and self-harm behaviour. We used thematic analysis to generate themes from the transcribed data.
What did we find?
Analysis generated 5 main themes related to how people with recent experience of self-harm interpret, evaluate, and engage with lived experience stories: (1) stories of recovery from self-harm and their emotional impact, (2) impact on self-help and help-seeking behaviours, (3) identifying with the narrator, (4) authenticity, and (5) language and stereotyping.
People with recent self-harm experience reported positive engagement with lived experience stories encountered on organizational websites and sometimes on social media. Stories were generally found to be most engaging and helpful if the feelings recounted by the narrator were relatable, practical help seeking and self-help strategies were included, the stories felt human and authentic, and the language used did not perpetuate stigma or stereotypes about self-harm. Our findings suggest that lived experience stories can support readers to feel validated and help them to better understand their own feelings and experiences.
The narratives of recovery were generally felt to be inspiring and motivating to those thinking about their own recovery from self-harm, and lived experience stories appeared to be highly valued as a form of web-based support, which could also serve as a temporary distraction for those experiencing an immediate urge to self-harm. However, our findings also highlight that voicing such narratives from a young or emerging adult’s perspective could have a demoralizing effect on older readers.
Our findings also highlight the need for a balance between providing detail and specificity to make stories feel relatable to readers and avoiding the exclusion or invalidation of readers who do not identify with such details. Previous studies suggest that high specificity in stories about self-harm or suicide—particularly regarding methods—can risk overidentification with the individual or narrator, thus increasing the risk of contagion. This was not captured in our findings as we deliberately excluded detailed references to methods of harm for ethical reasons. A balance should also be sought between the avoidance of narratives that may be triggering for some readers and the use of stories that could be overly formulaic and sanitized. In our sample, including a positive reference to scars in an example story was not felt to be triggering but contributed a sense of the lived experience story being more raw and real. Authenticity was felt to be further enhanced through portraying recovery journeys as nonlinear and acknowledging relapses and thus managing expectations regarding one’s own recovery. Although care must be taken to avoid normalization of self-harm, acknowledgment of self-harm as a key coping mechanism or part of someone’s identity may also feel less sanitized to some readers, thus increasing their engagement with a story.
Our findings highlight lived experience stories as a setting for the reader to compare themselves with the narrator. This can be helpful in managing feelings of isolation, knowing that others are experiencing similar feelings, and engaging in self-harm as a coping mechanism. Feeling as if one is in a position comparable with that of the narrator may inspire help seeking by recognizing need in others and oneself by extension and by instilling hope that recovery can be attained. However, we found that the helpfulness of comparisons between reader and narrator may depend on their relative age and the reader’s stage of recovery. Having few negative experiences or those perceived to be less traumatic compared with those of the narrator can feel invalidating and may deter some from seeking help as a result. Comparing oneself against a narrator who is more advanced in their recovery may instil feelings of dejection and pessimism in the reader. Providing numeric metrics, such as days without self-harm, can make comparisons particularly salient.
Our findings have several implications for health care or third-sector organizations publishing this type of content and for community guidelines for web-based forums in which users share their stories. First, it is important to consider the narrator’s age when describing a successful recovery. Second, ensuring that stories feel human and relatable by including references to challenges and relapses in a recovery journey will be valuable. Third, care should be taken to not perpetuate stereotypes of self-harm as a problem for teenage girls, and stigmatizing language or implied moral judgments should be avoided. We urge caution to those publishing or moderating lived experience stories, in terms of removing unhelpful language or graphic references to self-harm, using trigger warnings if appropriate, and being mindful of the risk of negative comparisons or competition.
Project team:
- University of Bristol, UK: Becky Mars (PI); Lizzy Winstone; Jennifer Ferrar; Paul Moran; Ian Penton-Voak; Lucy Biddle
- Samaritans, UK: Lydia Grace
Funders/Supporters
This study was funded by the National Institute for Health and Care Research (NIHR) Biomedical Research Centre (BRC) at the University Hospitals Bristol and Weston National Health Service Foundation Trust and the University of Bristol.
Publications and other outputs:
Winstone, L., Mars, B., Ferrar, J., Moran, P., Penton-Voak, I., Grace, L., & Biddle, L. (2022). How do people who self-harm evaluate online lived experience stories? A focus group study. JMIR Mental Health. 10, e43840. https://doi.org/10.2196/43840
Contact for further details: Lizzy.Winstone@bristol.ac.uk