 The magazine of the Melbourne PC User Group Online Support Groups for Men with Prostate Cancer Monika Merkes |
Men generally do not find it as easy to talk about health problems as women and they seek medical advice less frequently. They often ignore warning signs and symptoms until the problem becomes serious. For example, in 1999-2000 there were 148 female consultations for every 100 male consultations to General Practitioners and medical specialists. These figures exclude pregnancy-related consultations (Australian Health Trends 2001 http://www.aihw.gov.au/publications/phe/aht01/index.html.
A national survey in the U.S. showed that only 15 per cent of Americans have heard of prostatitis, an inflammation of the prostate gland which can be a very painful condition that affects many men over 50 years of age (and some younger men also). Surprisingly, of those Americans who claimed to be knowledgeable about this disease, 16 per cent believed that women and men were both affected by prostatitis http://www.menshealthnetwork.org/mhnnews/prostatitis_press.html.
Do online support groups and health information provided on the Internet make it easier for men to seek information and advice? I asked Alex Broom* from La Trobe University who is conducting research in this area.
MM: Alex, tell us about your research.
AB: I am researching the effects of the use of the Internet (for information and support) by Australian men with prostate cancer. I think the Internet is an increasingly important social forum, providing patients with valuable information and support about their health. I am interested in just how the Internet is affecting the lives of men with prostate cancer and the benefits and limitations of this new technology. In particular, I am exploring whether the Internet is a source of empowerment for patients and how this may be impacting on interactions with doctors. Doctors have traditionally been the only readily accessible source of information about diseases like prostate cancer, retaining tight control over medical decisions. My interest lies in how the traditional "one-way" doctor-patient relationship will be challenged by patients becoming more informed about prostate cancer via the Internet.
MM: Why is this an important area to research?
AB: Firstly, we know that people are surfing the Internet for information about their health and recent statistics which are probably conservative show that around a third of people in western nations have used the Internet to get health information. More importantly, people are using the information they find on the Internet to make decisions about treatment options. However, we know little about how this new forum is affecting how patients feel about disease and how they interact with doctors. In this research I hope to find out whether getting information online is making decision-making easier or harder for patients; whether patients feel more able to disagree with or support medical professionals after having consulted the Internet; how medical professionals react to patients' Internet usage, and in particular, their knowledge gained from this usage.
Another area of interest is the increasing number of online communities that are developing around particular health problems, with people 'chatting' to others about their health problems, treatment programs, and encounters with doctors. In my view, this encourages a more active role for the patient in the treatment process by giving the patient the knowledge to 'keep up' with, and at times surpass, their medical specialists in terms of understanding the disease and treatment processes. Despite these developments, we know little about what is happening in the medical encounter or how the Internet is affecting how patients feel about their role in the treatment process. This is why I believe there are many important questions that need to be addressed so that we can both understand the limitations and reap the benefits of the Internet as a health care tool. Some that come to mind are: Is the Internet encouraging patients to question conventional medical knowledge and medical decisions? Are doctor-patient dynamics changing as a result of patients' Internet usage, and if so, how are doctors coping with these changes? Does access to more information/knowledge and support have an influence on treatment outcomes?
MM: What is the main motivation for men to join an online prostate cancer support group? What type of support are they seeking?
AB: That is a difficult question to answer and I would not like to reduce it down to one particular motivation. I think, like any other community, everyone has specific motivations. The misnomer with online forums is that they are completely different from 'real life' social networks. One would probably not bother asking what motivated men to participate in a face-to-face support group because it would be obvious that there were many different motivations from the social to the informative. With online groups, because it is text-based interaction, people have tended to oversimplify the interactions that take place. Is it about support or information? Like other communities it is a complex mix of information, emotional support, social interaction and so on.
For those men with limited mobility or living a significant distance away from a face-to-face meeting, the motivation may be that it is easier to access (as long as you have a computer you can access from you own home). Another distinct advantage is the fact that people can send messages at any time, day or night, and due to time differences, probably expect a reply almost instantly. The advantages of this continual support for people who need support on a daily basis or those socially isolate are huge. Like any other support group, online communities provide many different types of support, and those who join them are also seeking many different forms of support. As is the case with most serious illnesses, the needs of the men will change over their treatment. At the initial stages a group may be used as a source of information, whereas, as the treatment progresses the group may become more a source of moral support and friendship.
MM: Are prostate cancer support groups different to other online support groups? If so, in what way are they different?
AB: From what I have seen, support groups dealing with cancer are different to, say, those dealing with chronic illness. Obviously, non-terminal illnesses allow for perhaps more exploration in regards to alternative treatments and also may focus more on emotional support, perhaps, in part, due to the lack of treatments available or the more positive life expectancy. In terms of online groups dealing with different cancers I'm sure there are differences. People tend to treat cancer as one entity, as one particular condition, whereas in fact this is very misleading. Each cancer acts on the body differently and reacts differently to treatment. Also, the treatments themselves produce different side effects. Although there may be a 'cure', the ongoing side effects of treatment may be quite debilitating. The result is that groups dealing with different cancers will be very different in the kind of support they provide. This is no different to face-to-face support groups.
MM: Are particular groups of men more likely than others to seek such support?
AB: This is a difficult question and one that I am particularly interested in exploring. We know from studies of Internet usage the younger the male, the more likely they are to use the Internet. In terms of nationality, the main barriers here are language and Internet capability. All the online forums dealing with prostate cancer I am aware of are English, thereby excluding any non-English speakers. Secondly, even in many developed countries such as Japan, Internet capability is poor, meaning that few people have access. The situation is worse in third world countries where Internet access is almost non-existent. As a result, it is probable (and certainly my observations of interaction online seem to support this) that the majority of men online are white, middle class, English-language speakers. This is something that needs to be addressed if the Internet is going to become more easily available to other populations.
MM: On behalf of the Melbourne PC User Group, thank you.
Alex would be really interested to talk to men who are suffering from, or have had, prostate cancer, and their thoughts on the issues raised here.
Alex Broom (BA hons, MA)
Ph.D. Candidate
School of Social Sciences,
La Trobe University,
Victoria 3086, Australia.
Phone: +61 3 94792701
Fax: +61 3 94792705
E-mail: A.Broom@latrobe.edu.au
*Alex Broom is currently in his second year of his Ph.D. at La Trobe University after coming to Australia from New Zealand in 2001. He completed his Masters in Sociology at the University of Canterbury, New Zealand in January 2001 on alternative cancer treatments. He teaches 1st year Sociology and works on systematic reviews of clinical trials with the Cochrane Collaboration.
| Links eMedical. A health information website owned and managed by a group of general practitioners in Melbourne http://www.emedical.com.au/default.asp?pageID=5&TopicID=9 SeedPods. A mailing list offering information and support to those interested in brachytherapy for prostate cancer http://www.prostatepointers.org/seedpods/ Cancer related chat rooms and discussion email lists http://www.sharedexperience.org/chatrooms.lasso Cancer Help Online. Links to cancer related sites http://www.cancerhelponline.org/links/prostate_cancer.htm |
Reprinted from the March 2002 issue of PC
Update, the magazine of Melbourne PC User Group, Australia
