The problem

The backgound to the initial drive to develop bodywhysConnect was a dilema that is faced by many similar organisations.  On one hand, it was becoming obvious that the traditional support group model was not always sustainable.  Numbers attending were in decline due to population density and stigma, and hosting support groups where people may not attend is a very resource intensive exercise.  On the other hand, support groups were the organisation’s raison d‘etre, and those who attended reported meetings to be helpful, informative and curative, thus it would be premature to abandon them.

The challenges

Delivering support and information to people for whom stigma, mobility, and simply being physically present can be problematic.

The solution needed to be safe, while protecting confidentiality and maintaining anonymity.

Overall, the solution needed to emulate, in as many ways as possible, the tried and tested traditional support group environment.

It needed to be as accessible as possible to both volunteers and service-users.

Additionally, the organisation wanted to be able to use the system for training, and volunteer and other organisational meetings.

The solution

In many ways, the internet is the perfect solution to many of these challenges, and eating disorders are the prototypical example of the internet’s potential to reach those that traditional services may have difficulty reaching.

We built-in many features that were specific to Bodywhys’ support model, such as

1. The need for 2 facilitator’s to be present at every session.  This protects both the facilitators and service users.  It is so integral to the service that we made it impossible for service-users to login without facilitators already present.
2. We took away many of the features that one might expect to find in other internet support groups.  For example, in a face-to-face support group, people do not whisper to each other, nor do they leave the meeting to start their own meeting, so these features were intentionally not allowed.
3. We added a message-board for volunteers to make notes after each session to enable a smooth hand-over to volunteers facilitating the next session.  This is akin to the notes that volunteers take after helpline calls.

In addition, we built in many features that addressed the specific needs of the organisation such as:

1. Security.  We spent a good deal of time designing the sign-up process to keep the system safe, while at the same time preserving anonymity.  When a user registers for the service, they are required to give a functional email address to which the rules and guidelines of the service are automatically sent.  The user must then reply to the email to indicate their acceptance of the rules and guidelines before their profile becomes active, and they become eligible to login to a meeting.  In doing so, they are also confirming the authenticity of their email address.  bodywhysConnect has never had a “prank” login, nor any problems with spam in it’s 5-year life-time.
2. Automatic transcription of sessions.  The transcript from every session is automatically saved for training purposes, qualitative analysis, and also to have a written record in the case of the system being used for board meetings (which can legally be conducted online).  Importantly, this feature can be turned off at any time.
3. Search by keyword.  This facility allows for searching for particular key words, facilitating resarch or general house-keeping.
4. Usage statistics.  On registration, participants are asked (but not required) to provide some basic demographic details, to facilitate better service planning.  The system can run a variety of reports based on these data quickly and easily.
5. Super-easy-to-use.  This is not just about being aesthetically pleasing.  Because we are coming from a community and voluntary sector background, the solution was built from that perspective.  It only has features that are useful and needed, nothing more and nothing less.  But yes, it also happens to be aesthetically pleasing!  This is the essence of really good design.

The success

bodywhysConnect is now the most popular support group, and has seen the greatest increase in demand since its launch.  The table below demonstrates usage for 2005 and 2006.

Table 1: Usage statistics for bodywhysConnect from 2004-2006.

What is most striking are the dramatic increases in usage since 2004.  With the usage of other Bodywhys services staying approximately similar or increasing, this suggests that a good proportion of bodywhysConnect users are new service users.

Who uses the system?

Also noteable, is the breakdown of age.  Almost half were in the 18-25 year-old age category, with nearly the same proportion 25 years or older.  Only 7% were 16 or 17 years. This suggests that the service is actually quite representative of the observed age breakdown in community samples of those with eating disorders.  Usership is not over-represented by the adolescent age groups, implying that this type of service has the capacity to reach a broad spectrum of users.

Dr. Alison Darcy conducted a 2-year academic evaluation of the service in the School of Psychology, University College, Dublin.  The reults demonstrated that those who acessed the service had significant eating disorder concerns and behaviours, very high anxiety and depression, and were very compromised in terms of self-esteem. 

What is more, the data showed that 65% of those who registered were not receiving any treatment for their eating disorder, regardless of the fact that their clinical profile suggested that they were in need of it.  These findings were published in an international peer-reviewed journal (Darcy & Dooley, 2007).

Testimonials

"One of the problems that I hear about in my work with the Eating Disorders Association UK is the difficulty in accessing support especially if a person cannot get along to a group or if they feel that meeting face to face is a bit intimidating.  Online groups offer a whole new model of support that does take a bit of getting used to.  I’ve picked up many new skills and I am still learning in every session.

The real benefit in being involved is that it’s great to support people regardless of where they live.  Participants are at different stages in relation to their disorders.  Some users are just coming to terms with their disorder for the first time while others have received treatment and checking in with the group seems to be a way of staying well for them.

The best sessions I have facilitated are ones where I seem to do very little.  Participant engage each other and discuss their feelings about treatment, recovery and whatever they feel like talking about in a way which is genuinely about providing real support to one another.  The most enjoyable thing about getting involved has been seeing the participants benefit.

As a facilitator you get to see that the group has really helped participants to take positive action or feel a little bit better about themselves – and that makes me feel good!”.

Mark Reilly, bodywhysConnect Volunteer.