Building an online community to promote communication and collaborative learning between health professionals and young people who self-harm: an exploratory study.

BACKGROUND: Online communities are known to break down barriers between supposed experts and non-experts and to promote collaborative learning and 'radical trust' among members. Young people who self-harm report difficulties in communicating with health professionals, and vice versa. AIM: We sought to bring these two groups together online to see how well they could communicate with each other about self-harm and its management, and whether they could agree on what constituted safe and relevant advice. METHODS: We allocated 77 young people aged 16-25 with experience of self-harm and 18 recently/nearly qualified professionals in relevant health-care disciplines to three separate Internet discussion forums. The forums contained different proportions of professionals to young people (none; 25%; 50% respectively) to allow us to observe the effect of the professionals on online interaction. RESULTS: The young people were keen to share their lived experience of self-harm and its management with health professionals. They engaged in lively discussion and supported one another during emotional crises. Despite registering to take part, health professionals did not actively participate in the forums. Reported barriers included lack of confidence and concerns relating to workload, private-professional boundaries, role clarity, duty of care and accountability. In their absence, the young people built a vibrant lay community, supported by site moderators. CONCLUSIONS: Health professionals may not yet be ready to engage with young people who self-harm and to exchange knowledge and experience in an anonymous online setting. Further work is needed to understand and overcome their insecurities.

Ethical practice in internet research involving vulnerable people: lessons from a self-harm discussion forum study (SharpTalk).

The internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a 'report' button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them.

Involving service users in intervention design: a participatory approach to developing a text-messaging intervention to reduce repetition of self-harm.

OBJECTIVE To engage a group of people with relevant lived experience in the development of a text-messaging intervention to reduce repetition of self-harm. BACKGROUND Contact-based interventions, such as follow-up letters, postcards and telephone calls, have shown potential to reduce repetition of self-harm in those who present at Accident and Emergency departments. Text messaging offers a low-cost alternative that has not been tested. We set out to develop a text-based intervention. The process of intervention development is rarely reported and little is known about the impact of service user involvement on intervention design. METHOD We held a series of six participatory workshops and invited service users and clinicians to help us work out how to get the right message to the right person at the right time, and to simulate and test prototypes of an intervention. RESULTS Service users rejected both the idea of a generic, 'one size fits all' approach and that of 'audience segmentation', maintaining that text messages could be safe and effective only if individualized. This led us to abandon our original thinking and develop a way of supporting individuals to author their own self-efficacy messages and store them in a personal message bank for withdrawal at times of crisis. CONCLUSIONS This paper highlights both the challenge and the impact of involving consumers at the development stage. Working with those with lived experience requires openness, flexibility and a readiness to abandon or radically revise initial plans, and may have unexpected consequences for intervention design.

Using metrics to describe the participative stances of members within discussion forums.

BACKGROUND: Researchers using forums and online focus groups need to ensure they are safe and need tools to make best use of the data. We explored the use of metrics that would allow better forum management and more effective analysis of participant contributions. OBJECTIVE: To report retrospectively calculated metrics from self-harm discussion forums and to assess whether metrics add to other methods such as discourse analysis. We asked (1) which metrics are most useful to compare and manage forums, and (2) how metrics can be used to identify the participative stances of members to help manage discussion forums. METHODS: We studied the use of metrics in discussion forums on self-harm. SharpTalk comprised five discussion forums, all using the same software but with different forum compositions. SharpTalk forums were similar to most moderated forums but combined support and general social chat with online focus groups discussing issues on self-harm. Routinely recorded time-stamp data were used to derive metrics of episodes, time online, pages read, and postings. We compared metrics from the forums with views from discussion threads and from moderators. We identified patterns of participants' online behavior by plotting scattergrams and identifying outliers and clusters within different metrics. RESULTS: In comparing forums, important metrics seem to be number of participants, number of active participants, total time of all participants logged on in each 24 hours, and total number of postings by all participants in 24 hours. In examining participative stances, the important metrics were individuals' time logged per 24 hours, number of episodes, mean length of episodes, number of postings per 24 hours, and location within the forum of those postings. Metric scattergrams identified several participative stances: (1) the "caretaker," who was "always around," logged on for a much greater time than most other participants, posting but mainly in response to others and rarely initiating threads, (2) the "butterfly," who "flitted in and out," had a large number of short episodes, (3) two "discussants," who initiated many more discussion threads than anybody else and posted proportionately less in the support room, (4) "here for you," who posted frequently in the support room in response to other participants' threads, and (5) seven "people in distress," who posted many comments in the support room in comparison with their total postings and tended to post on their own threads. CONCLUSIONS: Real-time metrics may be useful: (1) by offering additional ways of comparing different discussion forums helping with their management, and (2) by identifying participative stances of individuals so allowing better moderation and support of forums, and more effective use of the data collected. For this to happen, researchers need to publish metrics for their discussion forums and software developers need to offer more real-time metrics facilities.

Membership and boundary maintenance on an online self-harm forum.

In this article we explore how young adults became members and sustained membership in an online self-harm support forum, SharpTalk. We take a discursive approach to consider resources young people used to establish themselves, how others responded to their attempts, and how membership categories were developed and applied. Participants displayed expectations about appropriate ways of discussing self-harm, and about responses and advice. New posters made reference to other self-harm sites, provided biomedicalized narratives of their "story," and asked for help in particular ways. Participants were active in shaping interactions on the forum, requesting input from site moderators, and challenging each other both on perceived infringements of posting content, and on style of posting pertinent to membership. On the SharpTalk site, perceived deviance in posting behavior, and also the giving of health care advice, were most commonly addressed by other young people who self-harmed, rather than by the site moderators. We consider implications for creating sites that enable young people who self-harm to become members and sustain membership, and therefore access support.

Supportive interchanges and face-work as 'protective talk' in an online self-harm support forum.

Within a context of concern about inappropriate advice-giving online, we examined how young people who self-harm behave online, and how professionals might engage with them. We use Discourse Analysis to focus on participant interactions (posts)from a forum's crisis/support rooms, and highlight the prevalence of disclaimers, hedges, questions and tags in the young people's online interactions. We use the concept of face-work as a framework to help understand interactions in the forum SharpTalk. The findings demonstrate the use of a range of mitigation devices, and suggest that the young people orientate to a 'protective' line in their supportive interactions. These findings echo Goffman's (1967) 'supportive interchanges' in that the young people's online interactions may help to preserve face, in an emotionally complex setting, whose vulnerable members also need 'protective'and sensitive support. Taking this 'line' may enable members to create a more open and trusting context for support, and to remain in a forum which they find both helpful and challenging. In light of concerns about online support, the findings provide a new perspective on online peer-support for young people who self-harm.