Psycho-social Support in Cancer

Finding new answers to an old problem

History of the web and introduction of web 2.0

The term Web 2.0 has been used widely to describe the current state of the Internet as a whole. Based on the iterative development of software, the term “2.0” is meant to reflect progress in the application of the World Wide Web. Web 2.0 is not a progression of technology specifically, but instead a change in the way the Internet is used. Developers are rethinking the application of new and old technologies to transition the Internet from the classic role of information repository into a fully interactive platform. The interactivity can happen in a number of unique ways. What is popularly associated with Web 2.0 is the rise of the online community.What was once only a small portion of the web, online communities have rocketed in popularity.

Introduction of Social Networking with a brief introduction to the use in health care

Some of the most active sites in Web 2.0 have been ones that promote some form of social interaction among its users. These online communities have been dubbed “social networking sites” and include popular sites such as Facebook and MySpace. In these sites, it has been shown that the relationships that are fostered by the communities can outweigh the importance of the information gained by the user during the site’s use. While the use of social networking sites are becoming more popular in all sectors, including health care, the existence of these sites relies almost exclusively of the interaction of its users. As Gallant and Boone point out in their 2007 study “human interaction is the primary definer, creator and maintainer for online communities”.

These “social network” sites are dependent on the interactions among the users. Often times the site does little beyond recreate virtually the systems connecting people within a community. The components most important to an online community are defined in the studies of Jenny Preece. She identifies two components to a successful social network site: usability and sociability. Usability refers to a sites design, and the sociability structure is defined as a combination of “purpose, people and policies.” The “purpose” is the reason for the sites existence, the people are the users, and finally the policy refers to the formal and informal policies governing the community.

Health care has witnessed an expansion in health related social networking communities. However, many of these sites are peer-to-peer run networks with little-to-no professional input. As of October 2008, “Yahoo groups” alone lists more than 200 000 health related groups and nearly 19 000 health care groups. It has been shown there is insufficient evidence to support the benefit of peer-to-peer support [22].In response, the Princess Margaret Hospital, University Health Network has developed CaringVoices.ca

What is Caring Voices

Caring Voices (www.CaringVoices.ca), an online community of support for cancer survivors was launched in October 2006. Members of the Caring Voices community have online access to current educational resources, peer support, and advice and education from health care and community experts. Cancer survivors can access Caring Voices from across the country, and registered members can take part in real time chats, including several scheduled monthly events and discussions with other cancer survivors, members of the cancer community, and health care professionals. Caring Voices also offers a “people matching” function that allows survivors to expand their virtual community of support by finding and connecting with others like themselves. Health care professionals, survivor volunteers, and staff and volunteers from community cancer agencies host online events.Caring Voices is also a platform for research and is currently being used to explore the feasibility of providing education and support to breast cancer survivors with lymphedema and will be used as a platform for an online support group for women with sexual dysfunction resulting from gynecologic cancer (PI: Catherine Classen, Women’s College Hospital, Toronto, ON).

Caring Voices: Addressing the unmet need for psychosocial support for cancer patients

Caring Voices has been developed as a sustainable barrier-free way of providing professional and peer-led psychosocial support to cancer survivors across Canada. This Web 2.0 platform is helping cancer patients to connect both with each other and with cancer care professionals, exchange information and both seeking and providing social and psychosocial support. The literature suggests that this type of community is an important component of a healing plan. Patient-to-patient communications are changing the way medical research is carried out and the role of the health care provider in cancer treatment, by encouraging patients to learn from their peers and by providing them with a net of social support ^[23].Caring Voices supports information exchange (both the giving and receiving of information) including mainstream medical advice about conventional treatments, the decoding of complex information given by their doctors and other information that is more practical in nature such as where to find certain products or how to deal with various side effects of treatment ^[24].The exchange of these types of information results in psychosocial benefits ^[24]. As has been identified by others, social support is another key function of online communities. It has been reported that social support offered in online communities extends beyond issues surrounding cancer, and filters into other areas of life such as finances, relationships and employment issues ^[24].Real-time, professionally moderated chats are offered for each of these topic areas, and others in the Caring Voices community. Previous research has found that “telling stories” or sharing personal details of not only their treatment, but other aspects of life as well, has had a profound positive effect on community members ^[24]. As a result Caring Voices has established forums for people to share their experiences with the detection, diagnosis and treatment of cancer as well as stories related to living with cancer. The resource section of Caring Voices helps cancer patients cope with their unique information needs and a strong demand for sense-making processes ^[25]. For example, breast cancer patients, resulting from the asymmetric distribution of information between them and their physician often seek information elsewhere and increasingly so on the Internet. In addition, these patients have been identified as desiring a strong demand for interaction in their information seeking and that the interactions around the information often trumps the actual information needs ^[26].

Caring Voices User Statistics

From launch of the site in October 2006 to July 2008, Caring Voices has tracked 155,079 sessions and 5,302,757 page views. A session is counted for each user, from beginning of their visit to end, no matter how many pages were viewed in between. Page views are the sum of all the pages visited by all users throughout their sessions.In those 22 months, the site has registered 1469 members. There was an average of 49.5 users registered per month.

Chats are tracked based on the three categories: Talking sticks: One Chat for Cancer Survivors, Clinical Corner and Living with Cancer. Living with Cancer had the greatest number of participants in the chats.

In the forums there have been 378 posts in 122 different threads. The most popular forum is the living with cancer, which accounted for approximately 36% of all posts and nearly 33% of all threads.

Conclusion

New technologies and the growing popularity of online social networking communities provide opportunities for devising ways of meeting the psychosocial needs of survivors. Virtual access to support, coupled with educational resources and the ability to find and communicate with other survivors is an innovative way of fulfilling the unmet psychosocial needs of people with cancer.

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1. The strength of online communities is dependent on the members of the community. We believe Caring Voices is unique in that it provides both peer and world-renowned professional support yet the size of the community remains modest and the site lacks a flurry of activity. Working within the constrains of a modest budget and not wanting to drive the site with professional usage what are suggestions for strengthening this online community through numbers and usage
2. As a member of an online health related community what are the factors that drive you to both join and then actively participate in this type of a community.
3. When considering a unique site like Caring Voices that offers both professional and peer support what are the key performance indicators that should be considered to measure success? - Dr. Sara Urowitz