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Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Objectives
  5. Method
  6. Users’ experience of the HeartNET website
  7. Discussion
  8. Key Messages
  9. References

Background:  A website developed by the National Heart Foundation (WA Division) and Edith Cowan University, with the help of an Australian Research Council–Linkage grant, provides insight into the sense of isolation experienced by many heart patients which prompts them to engage in a relentless search to answer the fundamental question: why me?

Objective:  To discover whether an online community for people with heart conditions may help instil a sense of sharing a journey with others, and to assess the impact of this shared experience.

Methods:  The qualitative data constituted 50 in-depth interviews with heart patients using the HeartNET website. This website, with its 600+ membership, also provides Discussion Board data to add depth to the analysis.

Results:  Patients describe how their unsatisfactory search for information in one ‘place’ (the Internet) led them to discover a new ‘place’ (an online community) where they could ‘ask difficult questions’, and ‘gain support and wisdom’ from others.

Conclusion:  This paper suggests that, when anxious patients seek health-related information, for example in a library, they may benefit from being given contact points to communicate with others who find themselves in similar situations. Internet-based social software (Web 2.0) can provide this kind of communication.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Objectives
  5. Method
  6. Users’ experience of the HeartNET website
  7. Discussion
  8. Key Messages
  9. References

Howard Rheingold's1 book, The Virtual Community, which stemmed from his experience with the Whole Earth ‘Lectronic Link (WELL), is considered the naissance of virtual community research. Almost 15 years on, Rheingold's definition of virtual community is still used to preface discussions on how the phenomenon has augmented a sense of belonging for online participants. To drill down through his popular definition, virtual community embodies meaningful interactions between individuals who have invested their time and interest to construct shared experiences online. Community therefore evolves over time and does not simply exist by virtue of logging on. Online communities are increasingly respected as possible supporters of health-promoting behaviours. A 2004 British Medical Journal editorial ‘The first generation of e-patients’2 discusses the many positives experienced by patients engaged in online e-health communities, while subsequent discussion of an online, unmoderated, breast cancer support group3 argues that only a tiny proportion of informational posts were false or misleading (10 in 4600) and that these misstatements were corrected by other members within ‘an average of 4 h and 33 min’.

In various online communities, it is generally understood that information sharing and emotional support are interconnected. Preece, for example, argues this in the context of patients desiring both factual and empathic information from exchanges with other patients.

‘The communication was about much more than just exchanging factual information. It was about identifying and communicating with others experiencing similar problems. These people could identify strongly with the fear, the pain, the inconvenience, the frustrations, and the delights expressed by others who were recovering from an accident, surgery or illness. They were either going through similar experiences or they had been there. They knew what the other person was experiencing and feeling. Empathy was the compelling ingredient in many of these conversations.’4 p.65

HeartNET, the website discussed in this paper, developed into a thriving online community—previously reported in Bonniface et al.5,6—as members established bonds and friendships with each other. However, during the early stages of patient interaction online, it was not until membership was thrown open to all comers that the community began to acquire self-sustaining patterns of interaction. Over time, members established their own ‘gift economy’, where support was manufactured and reciprocated as patients shared their experiences of heart disease. Developed in sociology and social anthropology7 in the mid-20th century, and most recently applied by computer and information science theorists to an understanding of open-source software development dynamics,8 the online gift economy is theorized as benefiting ‘givers’ by boosting self-esteem and notions of personal worth9 when they contribute information and support to the community. Gift economy activities may also benefit a range of health outcomes, in that self-esteem has also been linked to compliance with therapeutic regimes.10 In HeartNET, members have been shown to offer reciprocal support to help motivate and sustain positive health behaviour changes, such as the adoption of exercise habits.11

Objectives

  1. Top of page
  2. Abstract
  3. Introduction
  4. Objectives
  5. Method
  6. Users’ experience of the HeartNET website
  7. Discussion
  8. Key Messages
  9. References

The primary purpose of this study was to discover whether the reciprocal support shown by members of this online community for people with heart conditions may help instil a sense of sharing a journey with others, and to assess the impact of this shared experience.

Method

  1. Top of page
  2. Abstract
  3. Introduction
  4. Objectives
  5. Method
  6. Users’ experience of the HeartNET website
  7. Discussion
  8. Key Messages
  9. References

The project reported here received nationally competitive funding between 2004 and 2006 (from the Australian Research Council) to construct, and evaluate the effectiveness of a website to support the building of community, the promotion of healthy behaviours and the development of philanthropy. A number of papers have already been published5,6,11–13 analysing, in particular, the challenges involved in building an effective mutual support website from the ground up. This paper takes an effective website as a given and addresses aspects of the research dealing with the promotion of healthy behaviours and the development and support of philanthropy.

Although the construction and use of online communities in therapeutic contexts is comparatively recent, the capacity of such communities to positively impact the progress of life-threatening disease is indicated by the success of face-to-face support groups. Goleman,14 for example, argues that both the length and quality of life of breast cancer patients has been positively impacted by membership of a therapeutic support group to the point where support-group membership was a more effective intervention than any specific drug regime available at that time. Unfortunately, many people are prevented from belonging to support groups as a result of their personal circumstances. Where people have access to the Internet, a relevant online community of patients and carers can offer round-the-clock support and care. Whilst the HeartNET research reported here was not constructed to directly measure improvements in the quality or length of life of people living with heart disease, it has been possible to collect subjective impressions of the impact of community membership upon a patient's understanding of their disease. At the same time, there are indications that belonging to a community gives an individual's experience of illness some ‘meaning’ because that experience provides the raw material through which one member can help another.

Hans: ‘The way I viewed the whole thing of getting involved [with HeartNET] was that I could supply information that would maybe lessen someone's dramas in the lead-up to it [surgery] because that's what I felt was my biggest issue, was that 6 years of that in the back of my mind with no-one really that had been there, done that or knew much ...’

The traditional attitude–behaviour hierarchy underpins many behaviour change theories (e.g. Theory of Reasoned Action, Theory of Planned Behaviour) which stipulate that, in order to change behaviour, attitudes need to be changed first.15 As behaviour change in the context of this website is self-reported (researchers could not observe and record behaviours before and after the website intervention), the authors sought evidence of attitudinal change as well as self-reported incidences of behaviour change. Further, while the researchers wished to examine ‘gross philanthropy’—any change in attitudes of HeartNET members to the National Heart Foundation (who cosponsored the development of the site)—this paper specifically deals with philanthropy in the sense of gifting time and support to the HeartNET community. The motivations and rewards of reciprocal engagement in a social exchange can be analysed in terms of the ‘gift economy’7 and that is the model used here.

Given that an online community is a social space developed through interaction, the research methods used to identify attitudinal change and participation in a gift economy were predominantly qualitative and social ones: (i) observation and analysis (of the Discussion Boards, inline image); (ii) formal in-depth semistructured interviews, inline image. Interviews involved 50 members with different levels of website engagement; different experiences of heart disease; different support structures and with a variety of country/metro/rural locations; (iii) informal exchanges between the researchers and members in person, inline image; over the phone, inline image; or via private messages supported in the website architecture, inline image. Importantly, all HeartNET participants are fully consenting members of this ethics-cleared research website and all quotes and references to participants have had names and uniquely identifying details altered to protect the members’ privacy. The icons used in this paper indicate the medium and context through which the data was gathered.

The HeartNET research was originally designed to allow the experimental matching of outcomes for patients using the site with people of the same age, gender, social status and disease progression who did not use the site. The complexities of patient recruitment, ethics requirements (for matching disease progression) and the artificiality of the community resulting, all played their part in the original failure of HeartNET as an online heart-patient support community.5,6 Thus, it is not possible to give definitive results about the impact of engagement with the website compared with the situation where a heart patient with an equivalent disease did not engage with the website. Instead, this research records the impact of community membership in terms of patients’ experiences of their disease without HeartNET membership compared with the disease as experienced alongside engagement with HeartNET: which is to say, the patient's experience of heart disease before and after HeartNET.

Users’ experience of the HeartNET website

  1. Top of page
  2. Abstract
  3. Introduction
  4. Objectives
  5. Method
  6. Users’ experience of the HeartNET website
  7. Discussion
  8. Key Messages
  9. References

Mutual support

Many of the posts on the HeartNET Discussion Board show the forum to share many of the characteristics of Preece's empathic communities.4 Thus, the provision of information is experienced by some patients as emotionally supportive. Paula's post from the HeartNET website (below) provides a useful overview of this and, as such, is treated as the foundational discursive extract for this paper. Although Paula was perhaps looking for medical information which could explain to her satisfaction why she had fallen victim to heart disease, Paula found something she wasn't expecting—a new kind of knowledge:

Paula: ‘Being a relatively young heart-attack victim, I looked every where for answers, but as much as I surfed I never found the answer that I was looking for ... I then stumbled across Hear[t]Net and thought that maybe this place will give me the answers needed. Well, it didn't, but what it did give me was a support group, the knowledge that I was not alone or unique, and that there are a lot people a lot worse off than myself. It has given me a place where I can ask the difficult questions and not feel like an idiot, gain support and wisdom from other members and in return offer them support.’ (inline image)

The impact for Paula of finding the HeartNET website was to take the edge off her relentless search for ‘answers’ and instead offered her a sense of belonging and travelling a difficult path in the company of a supportive group of people who understood the challenges she faced.

While Paula's declaration acknowledges that she has found ‘a support group’, the way in which support is offered online varies with the situation. Support may be given through simple ‘well done’, ‘hang in there’, or ‘good luck’ exchanges, but most often involves more composite communication in response to specific problems, such as an upcoming surgery, attempts to lose weight, stop smoking, or deal with work pressures.

Although there were perhaps thousands of incidences on HeartNET which would provide useful case studies for the examination of mutual support, Tess's ‘touch-and-go’ surgery illustrates the concept well. Having been one of the earliest support givers online, Tess received support during her time of need from those whom she had supported over the previous months. More than 100 members were responsible for constructing and forwarding a virtual card of support during her ordeal. Doug's message of support was typical:

Doug: ‘Such very good news to hear you are past the worry and concern that you lived with for so long. The weeks ahead will pass slowly, but every day is a progress. You will be out of hospital before you know it and well on the road to recovery. I know what you are going through and I promise you, every day is an improvement. Very gentle hugs to you :) Remember to push through the pain to breathe deeper. It's worth it.’ (inline image)

In this manner, support is constantly reciprocated: members receive support when they are in need and consequently give support when others are in need.

Support seeking as self-help

In some cases, the very act of seeking support is self-supporting. A post from the Discussion Board illustrates the benefit (or ‘aid’) that Dixie received by ‘verbalizing’ her recent surgery. While she was grateful for the supportive messages she received about her complicated procedure, she also found therapy in being able to ‘type [talk] it out’ (Dixie, inline image). It may be that the process of asking for support can help patients come to terms with their situations—explained by the old adage of ‘getting things off your chest.’ The detail and relaxed style of her post suggests that Dixie felt ‘among friends’: although she did not address her post to any members in particular, the fact that she signed off—‘thanks guys’—indicates she knew her words were being heard [read] by others.

Dixie: ‘It's been a few days now [since my operation], but I need to type it out to get it of my chest ... so to speak. Better put the kettle on!! I am healing nicely now and feeling a lot stronger. [ ... ] I had an awful time this time. [ ... ] Something must have shifted for me as I feel heaps better now. On hindsight I wish I had someone holding my hand during the op if poss. [ ... ] Thank you, I needed to get that out. Phew, a few more healing tears. All good stuff I suppose. Thanks guys it did help to write about all that.’ (inline image)

It is clear from this, and similar examples of reciprocity, that support giving, and the sharing of problems, may lead to support receiving. Essentially, the self-help element of the support site is triggered through helping others, and reciprocal impulses mean that where a member joins the site in order to get help they may then stay involved in order to offer it.

Support giving as stored currency or debt paying

Support may be offered to other members as a type of stored currency to be cashed in at a later stage. For many of the members, the uncertainty of their illnesses makes HeartNET a prized resource for acquiring support when it is needed. The possibility that HeartNET might have had to close down at the end of the Australian Research Council project that funds it was a concern to many members, as they were uncertain when they might need to draw on the support on offer. While HeartNET has now been confirmed as running to 2010, there was a chance that it might have had to close in 2007. Margo refers to this possibility when she talks about how ‘staying in touch’ (inline image, I, Metro), means that community members can tap into this support and avoid having to reinvent a personal network if and when they require it:

Margo: ‘Well something might go wrong and I think well if we don't support it [HeartNET] ... hey, I might be fit and healthy now but in 5 years’ time I might need that site again and if we don't support it and it's not there I'm back to square one.’

For others, the relationships that form online also influence their desire to return to the group and repay those who support them. Both Rich and Betty describe this as a type of obligation which they enjoy fulfilling. The obligation to return and engage with the site and those who are posting on it is likely spurred on and supported by the dynamic ‘drama’ which unfolds on the HeartNET website every day. The ‘scenes’ of this ‘reality show’ are set in motion in response to the personalized support exchanged between members.

Rich: ‘... because the contact has been made you sort of feel, not obligated, but there is an obligation to continue the interaction. And it's different from other avenues where you make contact with people through cyber space. I met my wife on the Internet so, [inaudible]. Because our condition is never [ ... ] going to go away, it's always going to be there so therefore [ ... ] they’re experiencing what you've experienced and everybody is working toward improving themselves or getting better or resolving the issues. You've got to maintain the contact to help them, so they’re helping you and you’re trying to help them and it becomes a self-perpetuating animal.’ (inline image)

Other members have described this obligation as a ‘quasi-addiction’ (Jane, inline image) to the site, logging in frequently to play or ‘pay’ their part in the unfolding drama. Although this study did not seek to examine individuals’ motivations for giving support, when members give support because they desire support for themselves—or because they feel obliged to maintain an active role in the lives of those who have supported them—a culture of reciprocity develops online. Where patients have started looking for information and received an invitation to participate in mutual support, they potentially stand to gain information, interaction, support and an opportunity to make a difference to others.

Support as bad debt

This loop-like pattern of giving and receiving online does not necessarily mean that individual members always benefit. For example, some members found that the support they offered was not acknowledged or had gone unnoticed by the people they had tried to support; which could mean waiting for a response from recipients which never came. While this may be part and parcel of community (some contribute, some do not), it was somewhat dissatisfying for engaged members:

Barnie: ‘I think it's a girl called [name withheld] and she was an Irish lady, she had a ... you know, a similar background to me and she said I can't get motivated to do exercise and I tried to motivate her and she's never answered so ... I don't know. And a couple of other times I tried ... there's a lady just recently, her 77-year-old mother's going through it and she sounded like she was in a panic so, you know, [ ... ] I wrote her a personal letter [private message] and she's never answered either [Sigh]!’ (inline image)

This lack of feedback may be (partially) indicative of the small number of people who ‘join up’ to the HeartNET website and then do not log on again, so never access or respond to the welcome they receive. New members may also get ‘lost in the crowd’. Existing members are busy interacting with their established online buddies and sometimes fail to read new member profiles, even although these can be very emotional as beginning members are encouraged to enter their ‘heart story’ and this can raise raw and painful issues. Barnie described his experience when he first joined:

Barnie: ‘... the people who first join they put their story there and most of them are crying for help [ ... ] but then it doesn't get to the mainstream and no one looks at it and the people are still sitting out there and saying, “well hang about, I joined this to get help and no one's come back to me [ ... ].” I think it happened to me initially and eventually you, you know [ ... ] I think you [the administrator] came back and said, “welcome I hope there's anything we can do we can help”, I said well it's there, I cried for help and, you know, no one's answering that.’ (inline image)

Barnie's experience described some of the problems that new members may encounter when they join an established community—and one of the critical roles of an administrator, looking out for the forgotten newbies. While some members constructed entering a heart story as simply part of their user profile, and did not think that it guaranteed supportive interaction, others used it as ‘crying for help’ and waited, hoping, for a nurturing response. For these members, getting help meant taking a ‘step of faith’ (Nicole, inline image), trusting in the efficacy of online communication and working to achieve an authentic sense of connection. Sadly, some members did not orientate themselves to the online environment, or cut through the daily buzz of existing members’ interactions fast enough to attract the attention of the supportive members. Some potential HeartNETters were ultimately lost to the HeartNET community, having failed to find what they were looking for. In time, Barnie came to trust the community to the point where he could share the disappointment he felt with the initial response he received.

While support groups may offer many benefits to those who successfully engage with a community, there can be no guarantees that a support group will respond effectively to the presenting need on the first contact. Finding a way into membership of an online community can present a challenge. Furthermore, although much of the support gifted online can be considered altruistic (at least on the surface), members might be motivated to give support for a number of other reasons, not least of which is that in supporting others they are helping themselves. Occasionally this dynamic can be thwarted so information givers should ensure that people seeking information always feel able to come back to ask for more.

Moderating information

Information about medication and its side-effects were hot topics of discussion in the early phases of supportive interaction. Where members post medical-related information (such as information about prescribed medicines or health regimes) moderation is essential in order to reduce any health risk associated with misleading information or misinformed opinion. On a member-driven website like HeartNET, however, designed specifically for patient-to-patient communication, it would be near-impossible to avoid discussions of this nature; and perhaps self-defeating to restrict topics of interest to members. Well-meaning clinicians may shun this type of open communication between patients, and reject the idea of an informative community resulting from a website such as HeartNET, but it is worth remembering that a patient-driven online community is not intended to substitute for clinical information. Further, if health information is only considered to be that which originates from the clinical sphere, rather than the tacit information which originates from ‘living the condition’ (Kelly, inline image), then it is understandable that patients feel ‘left in the dark’ (Betty, inline image) and cut-off from the type of information they really seek. What is needed (if this tacit information is allowed to be considered legitimate) is an adequate form of moderation and an online culture which supports responsible discussion. The two moderators (one a research team member, Leesa; the other Gerry, a lay counsellor from the Heart Foundation's support initiatives) were always careful to remind members of the implications of problematic postings whenever the opportunity presented itself:

Gerry: ‘Hi all. Again, as I stated in another posting today, never attampt [sic] a change of medication without consultation with your health professional. That's what's good about this site in that we can canvas ideas, but remember, what's good for the goose is not necessarily good for the gander. I'm all for suggestions/options offered as a possibility but not action without consultation re your own special case. Cheers.’ (Moderator, inline image)

The use of disclaimers and codes of conduct on HeartNET—along with users’ active acceptance of conditions of access and the ethics environment—are all intended to promote safety, as well as reduce the legal risk to the administration and between members. Further, these codes can have a flow-on effect which guides the way members make postings. In essence, responsible posting became part of HeartNET's internalized culture and, generally, members made responsible posts—sometimes citing the disclaimer themselves or suggesting others consult their general practitioner (GP) or specialist for specific information on the subject under discussion.

The ‘first do no harm’ ethical mantra within the health domain was a primary consideration during the course of the HeartNET research and, in particular, whenever medical-type information was being shared. The possibility of doing harm, however, was carefully weighed against the likelihood of ‘doing good’, as members valued, and seemed to benefit from, these discussions. Restricting such conversations might have undermined the very reason heart patients join online groups such as HeartNET. If they are not allowed to speak openly and honestly about real concerns, patients might as well leave the community and speak only with specialists and members of their medical team. Of course, this is unrealistic given that patients are social beings and as such interact and communicate their concerns and experiences (and illnesses) to others daily.

Kathryn: ‘Yes, I feel that it's okay to talk about medication [online]. We were doing that on Saturday [referring to a face-to-face HeartNET picnic] and, as women going into our 50s, we’re going through menopause [ ... ] so you get confused: “is it that that's causing me not to sleep or is it the anxiety of that?”’ (inline image)

Information comes in many guises. While there is an understandable tendency for library workers to see requests for health information as requests for information of the kind circulating among health professionals, it may be that what an inquirer is actually seeking is information about how best to live their life as a person with a specific illness. Sometimes this kind of everyday information is best accessed from people who have constructed productive ways of dealing with their illness in their everyday lives. Contacts for ways to connect with other patients can be life-changing information, alongside professional information created by and for health workers.

The dilemma of sharing

In contrast to those who willingly sought to share support, information and experiences, Cherie was reluctant to share too much of her story in the presence of those who'd already experienced what she had—perhaps because she felt she risked cultivating a victim-like or competitive environment. However, Cherie's desire not to ‘dwell’ on her illness implies that she feels HeartNET may have (temporarily) prevented her from ‘moving on’. It appears that HeartNET provided some therapy for her, however, when she offered support to a newly diagnosed patient (in this case someone awaiting the surgical procedure she had already undertaken).

Cherie: ‘... I of [have] got to the point of thinking well maybe I don't really want to talk about [my heart disease] ... ’cause it's you know ... I don't want to overly dwell on it and ... but I'm probably more motivated to help others who haven't gone through the process ’cause that in a sense helps me. Rather than wanting to you know go through a lot of discussion about what's happening to me in particular although I'm happy to share it, if you know what I mean? Does that make sense?’ (inline image)

Cherie recognized the contradiction of her statement: depicted by her saying she doesn't want to talk about her own issues but would still be willing to share them. Having learnt something about Cherie's character during this interview, her apparent indecision tells of an internal dialogue which describes a desire for privacy. If others can be helped, however, Cherie negotiates the context and is willing to unpack her experience to reveal any of her experience that may be relevant.

In a similar vein, Eric talked about the ‘beneficial’ (inline image) aspects of HeartNET as part of revealing that he felt HeartNET required him to dwell on his illness in order to compete for his ‘slice of support’ (inline image). In this case, Eric sees himself as engaged in a negative online competition to be acknowledged as the (more needy) supportee/recipient of support (rather than the supporter/giver of support). As a result, Eric was particularly concerned about portraying a victim-like mentality and decided to reduce his participation on the site.

Eric: ‘The reason I've probably dropped off HeartNET in the last number of weeks is that my ... my greatest concern is that you become a patient or you become a victim and I'm ... I'm not. [It's] very beneficial but what I have found in dealing with HeartNET and some of the other members is that you get into an environment where you kind of feel like you’re almost competing with the other members for attention or for a feeling of I'm going to say pity but I don't know that that's quite what I'm looking for but definitely for attention where you state your ... you tend to state whatever issues you’re dealing with and somebody comes along and it's almost like well they’re trying to trump you, you know, “well I've got this and I've got a brain aneurism” and someone else comes along [and says]“you think you've got problems well ... !” It's a bit like the old Monty Python script when we were young.’ (inline image)

In Eric's mind, an inadequate number of members were giving support compared with the number of members requiring support. In a sense, for Eric, the gift economy was running at a deficit. As with Barnie (earlier), Eric's story indicates that an introduction to a support group or an online community will not necessarily result in a positive result.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Objectives
  5. Method
  6. Users’ experience of the HeartNET website
  7. Discussion
  8. Key Messages
  9. References

A number of unmoderated or lay-moderated online communities exist to support patients seeking information and life strategies for dealing with a range of issues, making use of a number of social software applications, such as blogs, wikis, and discussion forums (often referred to collectively as Web 2.0). Many of these are of particular value to patients in remote and regional areas where people may not have ready access to face-to-face support systems and where sources of information about an illness may seem limited to one or two busy health professionals who may lack a day-to-day knowledge and understanding of the condition in question.

While there may be some concerns about the professionalism of the information provided in these contexts, research is increasingly demonstrating a benefit for those who wish to participate. Active engagement by members minimizes the risks of false or misleading information being circulated, while appropriate disclaimers at the point of information provision can help ensure that an online community is used for support and information alongside medical and professional knowledge.

Whereas many patients might be moved to search for information about their illness on the Internet, the HeartNET website indicates that it can also be useful to find out information about the experience of being a patient. For people with heart disease who access the HeartNET heart patient mutual support site, the experience has been likened to finding ‘a place where I can ask the difficult questions’. Any interaction with HeartNET soon reveals that facing life-shortening heart disease raises a number of difficult questions that the conventional model of medical care is ill-equipped to deal with. Living with heart disease can make many patients feel isolated and alone, while HeartNET offers reassurance that other people have also felt similarly and have lived to tell the tale—the empathic community observed by Preece making a significant impact on patients’ lives.4

Gift economy theory, based in anthropology,16 suggests that givers are also receivers and that those who give most benefit from increased self esteem, social regard and status. Although the model does not always work faultlessly—with at least one HeartNET member (Eric) feeling as though he was trapped in a cycle of your-turn-to-support-me-ness—for most community participants the seeking and giving of information about health proved mutually beneficial. Eric's case may point to a need for a deliberate mutual-aid strategy online; one which moves beyond the notion of online community as the mechanism for the production of support to learning how to give and receive support in a way that provides shared benefits.

The HeartNET case indicates that, when libraries and library workers are confronted with people anxious to locate specific information about particular illnesses and diseases, one of the most useful sources to recommend may be a self- and other-help site, allowing patients to share the experience of living with (and surviving) traumatic illness. The impact of such an ‘intervention’ to support patient communication, may, as demonstrated by Goleman,14 and as the testimony of the contributors to this research also shows, prolong life and quality of life. Thus, recommendations for those providing information services to support such patients can be couched in terms of:

  • • 
    library workers supporting information-seeking strategies on the part of the patient are also supporting the patient emotionally;
  • • 
    patients can be assisted in a move from information gathering to positive behavioural change within the context of a supportive online environment;
  • • 
    where the Internet is available, support-group access may reduce isolation (particularly in circumstances where there are no appropriate face-to-face equivalents);
  • • 
    an interactive website may offer a mechanism whereby the experience of illness can become the raw material of social benefit (in enabling a patient to draw upon their own disease and treatment processes to help someone else);
  • • 
    social networking (Web 2.0) software, such as HeartNET can provide an empathic community and a therapeutic support-group.

The implication of this research for library professionals is that people who are looking for information may be construed as sometimes using the information-seeking process as a precursor of, or a proxy for, positive behavioural change and the generation of social support. Where this is the case, information about support groups—and particularly online support communities—may meet both the presenting and the deeper need, and have the potential to have a real and documentable impact on patients’ lives.

Key Messages

  1. Top of page
  2. Abstract
  3. Introduction
  4. Objectives
  5. Method
  6. Users’ experience of the HeartNET website
  7. Discussion
  8. Key Messages
  9. References

Implications for Policy

  • • 
    A request for health information can usefully be understood as a request for support.
  • • 
    It is appropriate to offer inquirers information about support groups, as well as professionally valid information about illness and disease.
  • • 
    Library users may seek professional health information but also appreciate lay information on their disease and on people's coping strategies.
  • • 
    Health information concerning lay organizations and self-help communities should always be accompanied by warnings that a doctor or health professional should approve any change in behaviour.

Implications for Practice

  • • 
    Details of relevant online and face-to-face support groups should be collected and offered to people seeking information on health-related matters.
  • • 
    Any lay- or self-help information should have a disclaimer concerning the importance of checking behaviour with a health professional.
  • • 
    The inquirer should be told that amateur and self-help oganizations can be slow to respond and the inquirer is welcome to come back to the library.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Objectives
  5. Method
  6. Users’ experience of the HeartNET website
  7. Discussion
  8. Key Messages
  9. References
  • 1
    Rheingold, H. The Virtual Community: Homesteading on the Electronic Frontier. Reading, MA: Addison-Wesley, 1993.
  • 2
    Ferguson, T. & Frydman, G. The first generation of e-patients. British Medical Journal 2004, 328, 11489.
  • 3
    Esquivel, A., Meric-Bernstam, F. & Bernstam, E. V. Accuracy and self correction of information received from an Internet breast cancer list: content analysis. British Medical Journal 2006, 332, 93942.
  • 4
    Preece, J. Empathic communities: balancing emotional and factual communication. Interacting with Computers 1999, 12, 6377.
  • 5
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