Copyright (c) 2012 Social-medicine.org
Combining the three key areas of communication, community and content on a social networking platform opens the doors not previously made available:
– Instant two way communication helps bring people closer
– Supportive communities through enhanced functionality
– Friend circles allows people to connect and bond with others globally
Social Networking Users with Cancer
More than 12.5 million health-related searches are conducted on the Internet each day. More than 2.3 million people dealing with cancer are online and searching for answers, and about 20% of people with cancer use the Internet through family and friends. However, the exact number of people with cancer cannot be determined. As cancer is widespread in developed countries, and people generally have better Internet access, the assumption of 20% of people with cancer are Internet users, may actually be an underestimation.
Internet usage by cancer sufferers can be summarised into key areas:
Allowing for the functionality to email, live chat, video/ photo uploads, particularly on social networking platforms
Being a part of online support group and seeking closure from others, also seen on social networking platforms
Seeking relevant and updated health information, can also be obtained from social networking platforms
The above key areas summarises how people living with cancer are using the Internet, favouring social networking platforms, and provides a framework for current and future cancer research.
For people with cancer, e-mail communication is important for staying in touch with friends and family. Email is rated the top item for the reason why people go online. An astounding 31 billion e-mail messages are exchanged daily worldwide. However, as 40% of all e-mail messages exchanged are spam, and relate to health items such as breast augmentation, weight loss, and more. However, sending emails is not as effective as other forms of communication, where questions can be answered immediately.
There is opportunity to improve email communication between cancer sufferers. Cancer sufferers are expected to have all the current social networking functionality such as making friends, uploading photos and videos, writing on walls, e-mail, live chat one-to-one or in groups, and comment on blogs written. These forms of communication may help patients ask questions, facilitate understanding and shared decision-making, and reduce unnecessary appointments.
Online health communities or electronic support groups have emerged when enough people have registered to sustain public discussions, on a health related topic. Yahoo!Groups have more than 22,000 health communities in the Health & Wellness section, among them at least 280 cancer groups. Some health communities are facilitated by trained professionals, either oncology nurses, counselors, or cancer survivors.
The advantages of online health communities over face-to-face groups include absence of geographic and transport barriers; anonymity from stigmatizing, embarrassing, and sensitive issues; increasing self-disclosure; and encouraging honesty. Even people with rare diseases can find peers online. The anonymity of online communities may facilitate the participation of certain people, who may be culturally and socially conditioned not to ask for help and support.
However, the disadvantages of online health communities include a considerable amount of “noise,” negative emotions persuade, and lack of physical contact. As with content found online, there have been concerns over inaccurate information exchange online health communities. As honesty is taken at face value, where accomplishments, photos and updates cannot be fully verified, there are no system fact checkers, within the online world.
What Kind of Messages Are Exchanged In These Online Health Communities?
Information exchanged in health communities, show 80% of information giving or seeking personal opinions, encouragement, support, and personal experiences, and 20% prayers. Women are engaging in supportive messages more frequently than men, who used the electronic community primarily for information exchange.
What Is The Effect Of Online Health Communities On Well-being And Health Outcomes?
The various types of social networking such as e-mail, blogs and chat-rooms can increase social isolation and decreased mental health and psychological wellbeing. Heavy Internet use can be associated with increases in loneliness and depression and tended to increase stress. However, people found within online communities seek for comfort and support from others found within the communities.
The quality of information on cancer found on the Internet shows an accuracy of: 4% for prostate cancer, 5.1% for breast cancer, and 6% for testicular cancer. The published rates of inaccurate information are disturbing. But very little evidence supports the notion that information found on the Internet is worse than the content found on forums, where the content written is by illness sufferers detailing their experiences. There are increasing demands of consumer driven health content. Real people suffering from cancer, write the content seen on forums and social networking sites, are seen as a favorable source of information by other cancer sufferers.
Why Are Patients Turning to Web Information?
It is seen that 48% of people with cancer reported that they had insufficient information provided by their physicians, while 20% were not satisfied with the information given and 39% of women with breast cancer indicated that they “wished that they had help with knowing what questions to ask.” However, dissatisfaction with information provided is not the only reason why patients turn to the Internet.
What Is the Effect of Information on Persons With Cancer?
The provision of information provided to people with cancer has been shown to help them gain control, reduce anxiety, create realistic expectations, promote self-care and participation, and generate feelings of safety and security. The satisfaction with information provided has been shown to correlate with quality of life. People, who feel satisfied with the adequacy of information given, are more likely to feel happy with their level of participation and in the overall process of decision-making.