Characteristics of the sample and allocation to groups
The recruitment target for young people (54) was exceeded within a few days, and 77 were admitted to the study (mean age 19). The target of 18 professionals/students was met within 2 weeks, making a total of 95 participants. Their characteristics are shown in Table 1.
Table 1. Characteristics of participants
|Characteristic||Young people who self-harm (n = 77)||Health-care professionals (n = 10)||Health-care students (n = 8)|
|Mean age (SD)||19.3 (2.9)||34.9 (8.1)||25.9 (9.5)|
|Female||73 (95%)||7 (70%)||8 (100%)|
|White ethnic origin||74 (96%)||8 (80%)||8 (100%)|
|Country of residence|
|England||57 (74%)||10 (100%)||7 (88%)|
|Other UK||14 (18%)||–||1 (12%)|
|Last time self-harmed|
|In last 7 days||34 (44%)||–||1 (12.5%)|
|In last month||20 (26%)||–||1 (12.5%)|
|1–6 months||17 (22%)||–||1 (12.5%)|
|7–12 months||2 (3%)||–||–|
|1–4 years||4 (5%)||–||2 (25%)|
|5 or more years||–||1 (10%)||–|
|Type of self-harm (not mutually exclusive)|
|Cutting||77 (100%)||–||5 (63%)|
|Not eating||50 (65%)||1 (10%)||1 (13%)|
|Overdosing||48 (62%)||–||3 (38%)|
|Burning||44 (57%)||–||1 (13%)|
|Misusing alcohol/drugs||35 (45%)||–||2 (25%)|
|Bingeing||34 (44%)||–||1 (13%)|
|Other (e.g. head banging, hair pulling, bruising, broken bones)||40 (52%)||–||1 (13%)|
|Service contact for mental health problems||63 (81%)||1 (10%)||4 (50%)|
|Nature of service contact (not mutually exclusive)|
|General practitioner (GP)||50 (65%)||1 (10%)||3 (38%)|
|Accident & Emergency (A&E)||29 (38%)||–||3 (38%)|
|Drop-in or walk-in centre||8 (10%)||–||1 (13%)|
|Mental health professional (psychiatrist, psychiatric nurse, clinical psychologist)||51 (66%)||1 (10%)||4 (50%)|
|Counsellor (via GP)||31 (40%)||–||2 (25%)|
|Other (university/school counsellor)||12 (16%)||–||–|
|Mental health nursing||–||2 (20%)||4 (50%)|
|Clinical psychology||–||–||1 (12.5%)|
|Other medicine||–||1 (10%)||1 (12.5%)|
|Social work||–||2 (20%)||–|
|Other||–||1 (10%)||2 (25%)|
|Daily||75 (97%)||9 (90%)||8 (100%)|
|Once a week||1 (1%)||1 (10%)||–|
|Once a month or less||–||–||–|
|Missing data||1 (1%)||–||–|
|Social software use (not mutually exclusive)|
|Social networking sites||70 (91%)||6 (60%)||7 (88%)|
|Instant messaging||56 (73%)||4 (40%)||6 (75%)|
|Discussion forums||56 (73%)||2 (20%)||4 (50%)|
|YouTube||49 (64%)||3 (30%)||4 (50%)|
|Twitter||15 (19%)||1 (10%)||1 (13%)|
|Chat rooms||14 (18%)||1 (10%)||–|
|Skype||6 (8%)||2 (20%)||–|
At registration, 70% of the young people had self-harmed within the last month; nearly half (44%) in the last 7 days. All 77 reported having used cutting, among other methods. Five health-care students (63%) and one qualified professional (10%) reported self-harming or having self-harmed in the past. For allocation purposes, any participant who indicated that they were a health-care professional or student was treated as such, regardless of whether they also self-harmed. Participants were originally allocated to discussion groups as follows (First Phase):
- Group 1: 34 young people with experience of self-harm (n = 34)
- Group 2: 26 young people; 5 health-care professionals/students (n = 31)
- Group 3: 17 young people; 13 health-care professionals/students (n = 30)
The reconfigured groups, created at the end of Week 3 (Second Phase), were made up thus:
- Group 4: 39 young people; 6 health-care professionals/students (n = 45)
- Group 5: 38 young people; 12 health-care professionals/students (n = 50)
Figure 1 shows the progress of participants through the study.
Figure 1. Flow diagram of enrolment and progress of participants through the study. *‘Dropped out’ indicates that a participant had ceased to log into the site. Drop-out numbers do not include those who were continuing to log in without actively posting.
Download figure to PowerPoint
Participation in the online forum: First Phase
Participants began posting within a few minutes of the website opening. In each group, young people were the first to post. They immediately identified themselves as self-harmers and as experiencing a range of mental health problems, often introducing themselves by way of diagnoses or treatments and telling ‘medical’ stories, possibly due to an expectation that professionals would be present in the forum. The following was among the first posts:
Hi, my name is […], i'm 25 and live in […]. I have self-harmed in the past (since i was about 16) but i am doing well at the moment and have not self-harmed for about 4 months now. I'm taking medication for depression/anxiety and i'm on a withdrawal program for this, which is going quite well! I am well at the moment but i know how fast that can turn around, so i'm grateful for a good mood everyday! [Participant 054]
They were clearly comfortable in the online environment and well acquainted with forum conventions, such as the use of emoticons, avatars and signatures, and other ways of signalling friendship, such as (((()))) (hugs) and xxx (kisses).
The young people were quick to make use of the Support Rooms. The following extract is from one of the first ‘crisis’ posts, beginning with a long narrative and ending with an oblique request for help:
Thought I would get the ball rolling. Starting with a vague history I guess. I'm a teen Mum, although in my view the ‘teen’ bit is fairly irrelevant. My boyfriend is also still in his teens, and we are both struggling with depression. Recently, I convinced him to go to the doctors and he got some medication […] He ran out of pills a few days ago, and when he misses one or two his temper can be really bad […] and any discussions about his medication have ended in blazing rows where I have got really frightened of him and had to leave the house because he was scaring me […] I don't know what i'm going to do… [Participant 031]
Within 10 min, support was forthcoming from another self-harmer:
Hey hun, it sounds like a very complex relationship you are in, and i'm not going to pretend i have all the answers, but i think everything you have done so far is fantastic and you should be very proud of yourself. it can't be easy […] but i think you are doing all the right things. Hope not made you feel worse. Stay strong xx [Participant 034]
The young people were also keen to engage in discussion, responding to questions posed by researchers and initiating their own threads on topics as diverse as: Music and mood; Coping with scars in hot weather; Do you think talking therapies work?; The Internet and its role in ‘recovery’, and What makes a good mental health pro? Their discussion threads were all in some way health- or therapy-related, and there appeared to be a real eagerness to engage with health-care professionals on these issues.
Whilst the young people were posting enthusiastically and giving shape to the forum, health-care professionals and students were conspicuously absent. By the end of Week 2, only five of 18 professionals/students had posted, and only two had posted more than once. Group 1, consisting entirely of young self-harmers, was unaffected and was vibrant, with all but three participants actively posting. Members were supporting each other constructively and engaging in robust debate. Group 2 (84% young people; 16% professionals) was also running well despite the professional non-participation, with 20 young people actively posting, debating vigorously and providing peer-to-peer support. This was a particularly lively group, largely due to the presence of a self-appointed ‘orchestrator’ among the young people. Group 3 (57% young people; 43% professionals/students) appeared to lack momentum from the outset. Table 2 shows that, whilst there was little difference between Groups 1, 2 and 3 in terms of number of participants who logged in or posted at some time (overall participation), Group 3 participants logged in considerably fewer times, spent noticeably less time logged in, and posted far fewer contributions than participants in either Group 1 or 2.
Table 2. Comparison of participant activity levels across five discussion groups
| ||Phase 1||Phase 2|
|Group 1||Group 2||Group 3||Group 4||Group 5|
|Total hours open||447||447||447||1884||1884|
|Participants who ever viewed any pages||31 (91%)||23 (74%)||26 (87%)||28 (62%)||29 (58%)|
|Participants who ever posted any messages||30 (88%)||20 (64%)||18 (60%)||22 (49%)||21 (42%)|
|Episodes (number of times participants logged in)|
|Total number of episodes||1053||761||458||1847||3489|
|Minutes logged in|
|Total minutes logged in||24527||15608||4199||23672||53390|
|Mean minutes per participant per 24 h||38.7||27.0||7.5||6.7||13.6|
|Viewing (visiting pages but not posting)|
|Total pages viewed by participants||26844||25906||5378||36022||71488|
|Mean page views per 24 h||1441||1391||289||459||911|
|Mean number of page views per participant||790||836||179||800||1430|
|Total number of posts||793||1469||198||1797||1784|
|Mean number of posts per 24 h||42.6||78.9||10.6||22.9||22.7|
|Mean posts per participant||23.3||47.4||6.6||39.9||35.7|
The lack of vitality in Group 3 may have been as much to do with individual personalities and the absence of a natural leader as with numbers per se and the non-participation of professionals. Whatever the reason, it was clear that Group 3 was failing to meet the young people's expectations of emotional support and lively conversation, as illustrated by the following exchange between a participant and a moderator midway through the second week:
Participant 028: I'm doing pretty sh*t at the mo and feeling a bit lonely on here cause there's hardly ever anyone posting.
Moderator 3: Hi, I wonder why there's not more people posting? […] Keep checking in and writing and I'll do the same. take care xx
Participant 028: I've tried to get a few conversations going. I think at the moment a lot of people are at school or work so can't post. Maybe more people will be on in the evening. Maybe just need to give it time for more people to start posting?
The situation gave rise to serious concerns regarding the young people's safety and led us to reallocate all participants, as described above.
Consequences of professional non-engagement: development of a lay online community
The absence of health-care professionals/students meant that the life of the forum developed in an unexpected way. It gave the young people free rein to build a community that met their own needs, and allowed us to observe them doing so. Contrary to the popular image of self-harm sites as toxic environments where young people incite each other to self-harm,[17-19] our participants demonstrated a real commitment to supporting each other during difficult times and regularly encouraged each other to resist the urge to self-harm, including entering into ‘no-harm’ pacts, as the following consecutive posts show:
Participant 048: Working through really painful memories in counselling and every time I think about them I start crying and feeling really upset. I feel like cutting my arm until it's covered in cuts. Not a great idea when I have graduation on Friday.
Participant 005: Hey, […] I am also graduating on Friday… lets ‘not do anything’ together? *hugs* xx
Participant 034: Hi, You don't need to cut honey, talk with us instead […] Remember that however alone you feel, you are never alone on here x
They also frequently urged each other to seek professional help:
Participant 034: Hi, sorry to post but need some advice… Have a few wounds [and] last couple of days my arm feels like its burning and its quite swollen. feeling hot and cold and today ive been sick. Scared to go to drs after recent unpleasant experience. Have rung and they have no appointments anyway but said i should go to a&e if concerned about anything (didn't tell them it was SH). Just don't know whether to or not… do these symptoms really warrant me wasting drs time in a&e? Sorry, bit scared and emotional.
Participant 072: i think u should get them looked at but if u don't want to go to a&e u could ring your docs back and say its an emergency, then they have to see u today. hugs x x x
More detailed analysis of how they constructed individual and group identities and did peer support is presented elsewhere.[34, 35]
It also altered the role of the moderators. In keeping with usual practice in online communities, the moderator function was originally envisaged as a backroom one, involving policing the site, removing unsuitable content and enforcing ground rules. However, in the absence of health-care professionals, moderators and researchers were acutely conscious of a duty of care and began acknowledging crisis posts, getting to know the young people and engaging in friendly chat as well as focused discussion. Over the course of the project, moderators developed a range of strategies for supporting the young people, some of which were learned by observing how the young people supported one another. In the following example, a moderator responds to a young person in distress just by listening and inviting ‘troubles telling’:
Participant 005: Argh argh argh. Why do I manage to f*ck up everything? Why is nothing simple?
Moderator 6: Hello [username]. What's happened today? You were doing so well getting your flat and everything sorted. Do you want to talk?
Although lacking professional mental health training, and without claiming to be offering counselling or therapy, the moderators were able to support participants by showing acceptance and positive regard for them as persons and by acting as ‘older peers’.
Ongoing discussion within the forums about the nature of the experiment provided constant qualitative feedback. Some participants particularly valued the small and intimate nature of the discussion/support groups, which gave them a sense of safety and allowed them to feel that they mattered:
[On bigger sites] it does get very competitive. i often feel that you have to be feeling worse than everyone else or harm worse than others to be accepted. [Participant 051]
They also appreciated the opportunity to engage in focussed discussion, which they saw as facilitating healthy self-reflection:
I have loved the discussion and having thoughtful questions asked by you and others. In a way, I find it therapeutic in itself as reading the questions and others answers makes me reflect on what I feel about things and why. When I do this sometimes I can combat it and stop thinking that way. [Participant 086]
Participants also commented on the moderators' willingness to get involved in doing emotional support work:
I think the mods are better than on other sites I have used […] Mods here get involved and offer support that maybe users can't because they are still going through it themselves. They also provide inspiration that we can get through these difficult times, and you know they will always listen. [Participant 034]
Some particularly welcomed the opportunity to engage with the NHS, make their views known and possibly influence practice:
Its nice to have a voice and know there are people out there who do want to listen and help make a change in the future. [Participant 033]
Negative feedback was mainly focused on the reallocation, which unsettled some participants.