Affect and an Effective Online Therapeutic Community

Initial Design

How to Cite

Bonniface, L., Green, L., & Swanson, M. (2005). Affect and an Effective Online Therapeutic Community: Initial Design. M/C Journal, 8(6).
Vol. 8 No. 6 (2005): 'affect'
Published 2005-12-01

Affect theory is generally associated with the lifetime’s work of Silvan S. Tomkins, whose four volume work, Affect, Imagery, Consciousness, was published between 1962-92. The volumes argue that humans are subject to a range of innate affects: two positive (interest/excitement; enjoyment/joy), one neutral (surprise/startle) and six negative (distress/anguish; fear/terror; anger/rage; shame/humiliation; dissmell [reaction to a bad smell]; disgust).

In a crude “advanced search” using Google, affect is related to emotion in 3,620,000 Web references; to intellect in 1,530,000 instances; and to both intellect and emotion in 1,670,000 cases (Google). Affect may consequently be constructed as a common but complicated response which cannot be simply elided with either emotion or intellect but which involves the integration of both. In particular, affect is generally constructed as a human response to a precipitating stimulus (be it an idea, a physical event, etc). If this is accepted, then Tomkins’s Affect theory might imply that the innate affects only reach conscious awareness as a result of a change in circumstance (e.g., idea or event) which requires a response.

The importance of affect as a motivator for action has long been put to good use by advertising and marketing professionals who recognised early in their professions’ development that it is the ESP (emotional selling proposition) that delivers more punch, more quickly, than rational argument. An organisation’s (or individual’s) unique selling point can be rational or emotional, but it is easier for many people marketing a product or service to craft a perceived (unique) difference using emotion rather than logical rationality. For example, Coke and Pepsi are generally constructed as fighting their turf wars based on their emotional appeals, rather than any logical difference between the brands.

This paper deals with the use of affect to craft an online therapeutic Website (HeartNET) as a joint ARC-Linkage research project between the National Heart Foundation of Australia (WA Division) and Edith Cowan University’s School of Communications and Multimedia. The research originally started with the idea that heart patients would appreciate the opportunity to communicate online with people going through similar experiences, and that this might create a virtual community of mutually supportive recovering participants. The reality held a few surprises along the way, as we discuss below.

HeartNET has been designed to: 1) reduce the disadvantage experienced by people in regional and remote areas; 2) aid the secondary prevention of heart disease in Australia; and, 3) investigate whether increased interaction with an organisation-sponsored affective environment (e.g., the Website) impacts upon perceptions of the organisation. (This might have long-term implications for the financial viability of charitable organisations). In brief, the purpose of the research is to understand the meanings that Web-participants might generate in terms of affective responses to the notion of a shared HeartNET community, and investigate whether these meanings are linked to lifestyle change and responses to the host charity. Ultimately the study aims to determine whether the Website can add value to the participants’ communication and support strategies. The study is still ongoing and has another 18 months to run.

Some early results, however, indicate that we need more than a Website and a common life experience to build an affective relationship with others online. The added extra might be what makes the difference between interaction and affective interaction: this needs conscious strategies to generate involvement, aided by the construction of a dynamic (and evolving) Web environment. In short, one stimulus is not enough to generate persistent affective response; the environment has to sustain multiple, evolving and complex stimuli.

Online support groups are proliferating because they are satisfying unmet needs and offering an alternative to face-to-face support programs (Madara). Social support also combines some elements of affective community, namely belongingness, intimacy and reciprocity. These community elements can be observed through three levels or layers of social support: 1) belongingness or a sense of integration, 2) bonding which is somewhat more personal and involves linkages between people, and, 3) binding whereby a sense of responsibility for others is experienced and expressed (Lin). Here, social support may prompt an affective response and provide a useful measure of community because it incorporates other elements.

Initial Design

The project was initially designed to build “an affective interactive space” in the belief that an effective online community might develop thereafter. However, the first stumbling block came in terms of recruiting participants: this took almost nine-months longer than anticipated (even once Ethics approval had been granted). Partly this was due to a specific focus on recruiting people born between 1946–64 (“baby boomers”), partly it was due to the requirement that participants had access to the Web, and partly it was because we sought to specifically recruit non-metropolitan Western Australians who had suffered a health-challenging heart-related episode. We were hoping to identify at least 80 such people, to allow for a control group in addition to the people invited to join the online community. Stage 1 was to be the analysis of the functioning of the online community; Stage 2 would take the form of interviews of both community members and the control group. One aspect of the research was to determine whether online participants perceived themselves as belonging to an online community (as opposed to “interacting on a Website”) and whether this community was constructed as therapeutic, or in other ways beneficial.

Once the requisite number of people had been recruited, the Website went “live”. Usage was extremely hesitant, and this was the case even though more people were added to the Website than originally planned. (In the end we had to rely upon the help of cardiologists publicising the research among their heart patients. This had a continuing trickle effect that meant that the Website ultimately had 68 people who agreed to participate, of whom 15 never logged in. Of the remaining 53 participants, 31 logged in but never posted anything. Of the 22 people who posted, 17 made between one and four contributions. The remaining five people posted five or more times, and included the researcher and an experienced facilitator, Sven (name changed), who was serving in a “professionally-supportive” role (as well as a recovering heart patient himself). This was hardly the vibrant, affectively-supportive environment for which we had been planning. Even with the key researcher-moderator calling people individually and talking them through the mechanics of how to post, the interactions fell away and eventually ceased, more or less, altogether after 11 weeks.

One of the particularly distressing implications of the lack of interaction was the degree of self-revelation that some participants had offered when first logging onto the site. New members, for example, were encouraged to “share their heart story”. Susan’s (name changed) is an example of how open these could be:

I had a heart attack in February 2004. This came as a huge shock. I didn’t have any of the usual risk factors. Although my father has Coronary Vascular Disease, he didn’t have any symptoms until his mid 60s and never had a heart attack. I had angioplasty and a stent. I accept I will be taking medication for the rest of my life. I’m fine physically but am having treatment for depression, which was diagnosed 6 months after my heart attack.

In normal social situations an affective revelation such as “I’m fine physically but am having treatment for depression” would elicit a sympathetic response. In fact, such “stories” did often get responses from active members (and always got a response from the researcher-moderator), but the original poster would often not log in again and would thus not receive the group’s feedback. In this case, it was particularly relevant that the poster should have learned that other site users were aware that some heart medication has depression as a common side effect and were urging Susan to ask her doctor whether this could be a factor in her case.

A further problem was that there was no visible traffic on much of the Website. During the first 12 weeks, only seven of 155 posts were made to the discussion forums. Instead, participants tended to leave individual messages for each other in “private spaces” that had been designed as blogs, to allow people to keep online diaries (and where blog-visitors had the opportunity to post comments, feedback and encouragement). It was speculated that this pattern of invisible interaction was symptomatic of a generation that felt most comfortable with using the internet for e-mail, and were unfamiliar with discussion boards. (Privacy, ethics, research design and good practice meant that the only way that participants could contact each other was via the Website; they couldn’t use a private e-mail address.) The absence of visible interactive feedback was a disincentive to participation for even the most active posters and it was clear that, while some people felt able to reveal aspects of themselves and their heart condition online, they needed more that this opportunity to encourage them to return and participate further. Effectively, the research was in crisis.

Crisis Measures

After 10 weeks of the HeartNET interaction stalling, and then crashing, it was decided to do four things:

  • write up what had been learned about what didn’t work (before the site was “polluted” by what we hoped would be the solution);
  • redesign the Website to allow more ways to interact privately as well as publicly;
  • throw it open to anyone who wished to join so that there was a more dynamic, developing momentum;
  • use a “newbie” icon to indicate new network members joining in the previous seven days so that these people could be welcomed by existing members (who would also have an incentive to log in at least weekly).

Five weeks into the revamped Website a number of things have become apparent.

There is some “incidental traffic” apart from research-recruited participants and word-of-mouth, for example (Jane): “I discovered this site while surfing the net. I haven’t really sought much support since my heart attack which was nearly a year ago, but wish I had since it would have made those darker days a lot easier to get through.” An American heart patient has joined the community (Sam): “I have a lot to be positive about and feel grateful to have found this site full of caring people.” Further, some returnees, who had experienced the first iteration of the site, were warm with acknowledgement (Betty): “the site is taking off in leeps [sic] and bounds. You should all be so proud.”

People are making consecutive postings, updating and developing their stories, revealing their need for support and recognising the help when they receive it. It is not hard to empathise with “Wonky” (name changed) who may not have family in whom s/he can confide:

(Wonky, post 12, Wed) [I need] preventative surgery of this aorta [addressing a bi-cuspid aortic valve] before it has an aneurysm or dissects … and YES I AM SCARED … but trying to be brave cos at least now I know what is wrong with me and its kinda fixable …

After being asked by interested members to update the community on his/her progress, Wonky makes the following posts:

(Wonky, post 13, Wed) […] I am currently petrified … And anxiously waiting to see the cardio at 3 pm Thursday regarding the results of my aorta echo … and when they are going to decide I need lifesaving surgery …

(Wonky, post 15, Fri) ok…so I am up to Friday morning and fasting for the CT scan of the dodgy aorta etc … this morning … why do I get hungry when I have to fast yet any other day I really have to force myself to remember to even eat …

(Sven, online support person, Fri) great news [Wonky] and I sense a more ‘coming to terms’ understanding of your situation on your part. You’re in good hands believe you me and you are surrounded by a great number of friends who are here to cheer you on. Keep smiling. […]

(Wonky, post 16, Sun) Yes [Sven], you are exactly right […] [declining health] I guess is what scared me and plus I had pretty-much not bothered to research into the condition early on when I was first diagnosed … but yeah … my cardio guy is wonderful and has assured me I am not going to drop dead any-time soon from this …

For people who had experienced heart disease without support, the value of the HeartNET site was self-evident (Jace): “My heart attack was 18 months ago and I knew no one with a similar experience. My family and friends were very supportive but they were as shocked as me. Heartnet has given me the opportunity to hear other people’s stories.” Almost two weeks later, Jace was able to offer the benefit of her experience to someone suffering from panic attacks:

I had several panic attacks post my heart attack. They are very frightening aren’t they? They seemed to come out of nowhere and I felt very out of control. I found making myself breath[e] more slowly and deeply, while telling myself to calm down, helped a lot. I also started listening to relaxation CDs as well. Take care, [Jace].

Others have asked for advice:

(Anne): “Everyone, and I mean everyone, has been saying ‘are you sure you want to go [back to work]?’ Does anyone have coping strategies for those well meaning colleagues and bosses who think you need to be wrapped up in cotton wool?”

Several people have taken the opportunity to confide their deepest fear:

(Marc): “Why me? Why now? Can I get back to work normally? Every twinge you feel, you think is the big one or another attack that will get you this time.” (Anne): “I decided to spend last night in A&E [accident and emergency] after a nice little ambulance ride. It turned out to be nothing more than stress and indigestion but it scared the crap out of me. I have taken it so easy today and intend to rest up from now on in.”

Some of the posts are both celebratory and inspirational (although the one cited below required a rider to the effect that any change in activity should be checked with a GP or specialist):

(Joggy) I mentioned on an earlier post that I was going to run the 4km in the City to Surf and I actually did it.

This is from someone who has probably run no more than 100 metres in one go in her life and guess what, I quite like it now […] I know that I am way fitter now than I have ever been and in a nutshell it’s great.

Others see support as a two-way street:

(Drew) “If you no longer fell [sic] YOU need the support, keep in mind others may benefit from YOUR support.”


Tomkins’s Affect theory suggests that humans are subject to two positive affects: interest/excitement; enjoyment/joy, and one neutral affect: surprise/startle, along with six negative affects. All these affects are decoded/interpreted from facial expressions and require face-to-face interactions to be fully perceived. When we look at what affective prompts may be inciting people to log into HeartNET and communicate online, however, it becomes hard to second guess the affective motivation. Interest/excitement may be overstating the emotional impulse while enjoyment/joy may be an extreme way to describe the pleasure of recognition and identification with others in a similar situation. Arguably, HeartNET offers an opportunity to minimise negative affect, in particular “distress/anguish; fear/terror; anger/rage; shame/humiliation” – all of which may be present in some people’s experiences of heart disease. A strategy for reducing negative affect may be as valuable as the promise of increasing the experience of positive affect.

As for the rational or emotional impact, it seems clear from the first stages of the research that rationally people were willing to take part in the trial and agreed to participate, but a large majority then failed to either log in or post any contribution. The site came to emotional life only when it was less obviously a “research project” (in the sense that all participants still had to log in via an ethics disclosure and informed consent screen) in that people could join when and if they were motivated to do so, and were invited to participate by those who were already online. Since the Website was revamped and relaunched on 2 August 2005 a further 124 people have joined. It appears that HeartNET is now both an affective and effective success.

Author Biographies

Leesa Bonniface


Lelia Green


Maurice Swanson