Bonnie Southcott
Communication 546: Paper 1/Draft
The evolution of Internet technologies and, the Internet’s penetration into the marketplace, has established the Web as a major destination for individuals and their families who are looking for information and social support following the diagnosis of a major illness or serious chronic condition. Web site content providers and designers can meet patients’ online needs by recognizing how Internet technologies might facilitate a sense of community for someone isolated by a major health event.
The Tradition of Social Support
To understand how this can best be accomplished, it becomes necessary to view the traditional ways in which patients built social support prior to the advent of the World Wide Web. This historical context allows Web site architects to understand why health seekers use the Web to meet their informational and social support needs. In turn, those architects can then develop meaningful sites that will not only attract users, but also help users in their attempt to maintain health, hope and a sense of connectivity during a health crisis.
The increasing number of online health seekers represents an ever-expanding consumer base looking for Web-based health care information and support services. According to research from the Pew Internet & American Life Project (May, 2006), more than 73 percent of Americans are now online. Of that number, 20 percent say the Internet has “greatly improved the way they get information about health care” (Pew Internet & American Life Project, April 2006). And that number is growing each year.
Health information and support delivered via the Internet differs from face-to-face delivery of the same services in that the technology allows the dissolution of geographical and temporal issues (Gilat & Shahar, 2007). The reason that individuals experiencing a health crisis might seek information and support following diagnosis of a major health event, however, exists independently of the way in which those services are delivered; the need to connect with others and arm oneself with health information is frequently the result of the kind of social isolation experienced by many chronically ill people (Holley, 2007).
Killeen (1998) suggests that, “Social isolation with choice is aloneness, while social isolation without choice is loneliness.” Mobility issues, time constraints created by disease management, and disconnect from social circles isolate individuals impacted by a major health event (Holley, 2007). Studies on heart patients, cancer patients, and people suffering from arthritis, diabetes and any number of other debilitating chronic illnesses indicate that the idea of social isolation is not relegated to one disease state or health episode (Holley, 2007).
Research underscores the importance of support groups in providing patients an increased sense of social support and a decreased sense of psychological distress. The literature indicates that social support from friends, family and health care providers can result in a better quality of life and lower post-surgery distress (Sammarco, 2001). Indeed, the ability to successfully process issues that arise following a major diagnosis appears dependent on the ability of individuals to talk with others in a supportive environment (Taylor, Kulik, Badr, Smith, Basen-Engquist, Penodo & Gritz, 2007).
Another contributing factor that leads those living in the shadow of a major diagnosis to find support in each other can be found in the literature describing the effectiveness of 12-step programs. Participants sometimes indicate that the shared experience of alcohol or substance abuse provides those within the program a bond that can’t be reproduced with someone who has never experienced addiction before. The strong relationships built on this shared experience exist both inside and outside the program (Humphreys & Noke, 1997).
In a similar vein, Gilda’s Club, a national cancer support organization named after Saturday Night Live’s Gilda Radner who died of ovarian cancer in 1989, considers its members “experts” when it comes to living with the disease. Through social events and structured support groups, the organization leverages the power of members’ shared experiences to facilitate deep bonds and friendships meant to emotionally sustain members through treatment and beyond (www.gildasclub.philosophy/asp).
The research clearly describes the importance of social support following the diagnosis of a major health issue, and is infused with examples of the value individuals place on the process of talking to others living with the same condition or disease. The advent and growing prominence of Internet technologies have now provided a new delivery method for the kind of social support traditionally found in the face-to-face environment, urging researchers, medical organizations and corporate America to consider the following questions:
1. How can Internet technologies facilitate a sense of community for someone isolated by a major health event?
2. What theories help explain why users gravitate toward one Web site and not another in their search for online health communities and information?
3. Is developing a sense of online community dependent on group interaction via chat rooms, forums and news groups?
4. How does digital storytelling impact the user’s sense of community?
5. What role does the digital divide play in online telehealth?
6. How will technology develop to further strengthen the Internet’s role as a social- support resource for individuals facing a major health incident?
The Internet Becomes a Resource
Few could predict the explosive technological changes that the early 1990s would bring as early adopters gave rise to Internet technologies. That explosion, however, one that would change the way people live their lives and run their businesses throughout the world, dates back much further than 1991, when the World Wide Web was born. It began in the late 1960s when universities and government agencies around the globe began experimenting with ways to connect one network to another network. Those projects eventually led to the adoption of TCP/IP in 1985, providing a protocol with which computers could communicate globally. In 1989, amidst controversy and worries that the move would somehow bastardize an intellectually pristine cyber environment, the Internet was opened to corporate interests, and e-mail emerged as a new communication technology (http://www.computerhistory.org/internet_history/).
During the early1980s to the mid-90s, Bulletin Board Systems (BBS) became a technological mainstay for people who wanted to discuss an issue with others in asynchronous fashion; BBS posts appeared on the screen in a thread, one after another. Prior to the launch of the World Wide Web, the BBS provided people the capability to upload data to a newsgroup, divided into subject areas, and invite discussion of the data by other users. The system was, however, limited by a structure that called for users to connect via landline telephony. The result was that group discussions were frequently limited to people living within the same calling area code; long-distance phone calls into a newsgroup were, for most, prohibitively expensive.
The predominate BBS in the early days of the Internet was Usenet, established in 1985; it is still in use today. Below is a chart that follows the increase in Usenet traffic for the last 12 years. It must be noted, however, that automated spamming accounts for a substantial part of that increase (http://en.wikipedia.org/wiki/Usenet); today’s computer users tend to gravitate toward Web forums and Weblogs to participate in online discussions.
These virtual communities offered early adopters, those with the know-how and applicable hardware and software, the ability to form virtual niche communities. The BBS could have provided a widespread, online forum for individuals grappling with a major health crisis, however, the digital divide created by user knowledge, cost, and ownership of appropriate software and hardware precluded widespread use of the tool for the general population. With no central server or central system owner, users needed special software, a newsgroup reader, to make use of the BBS. Additionally, users needed the technical expertise to configure their computer to accommodate the newsgroup reader in order to make use of the system.
GRAPH: Usenet Traffic Per Day
(http://en.wikipedia.org/wiki/Usenet)
As computer users developed a more sophisticated set of Internet tools, they became groomed for the onset of a new technological development, the World Wide Web. It was the introduction of this Internet-based advancement that allowed users to interface with one another in a more accommodating process, one that required less technological know-how and no concern over the geographical location of those with whom they communicated (Cotton, 2000).
The binary code of digitalization has led a revolution in the way users consume media today. In the short 16 years since the advent of the Web, computer-mediated communication has built an army of followers who have come to rely on e-mail, Web sites, forums, Weblogs, file sharing and voice telephony (VoIP) for business, family and play. Indeed, even delivery systems that have traditionally been analogue, like television and radio, are now marching to the beat of the digital drum. The coup d’etat for this technology is the evolution of the computer as an essential delivery system of online information and social networking capabilities. It is this advancement that seems to hold so much promise for individuals and their families who are struggling with a major health event.
In order to understand how Internet technologies (IT) might meet the social support, informational and instructional needs of a health seeker, it becomes important to examine the theoretical framework of the user’s decision to participate in the online environment. Uses and Gratification Theory (U&G) examines what motivates users of media. Best known for its application in the study of radio and television use, the theory has been expanded to include the “new” media of cable, video and TV/VCR remote controls. In 2004, Thomas Stafford and Marla Royne Stafford broadened the scope of the theory and applied it to Internet use (Stafford & Stafford, 2004).
Traditionally the U&G theory takes a “customer-level view” and describes two elements that provide user satisfaction when interacting with media: content and process (Stafford & Stafford, 2004). Content satisfaction underscores the important role the message plays in media-use gratification; process refers to the actual use of the medium (Cutler & Danowski, 1980). For example, U&G can be used to help define the tremendous success of YouTube. The content of the site, various user-generated videos meant to entertain, inform and sometimes shock, provides satisfaction to site visitors. People enjoy watching and are entertained by the homemade videos housed on the site.
A second element of the site, however, the actual process of browsing through possible clips to view, is also essential to YouTube’s success. The simple act of browsing the site and watching the screen refresh with the latest video additions provides gratification independent of content.
Stafford and Stafford have identified a third, Internet-specific gratification for the application of the U&G theory to the Internet: social gratification. They maintain that “chatting and interacting with people over the Internet seems to characterize this usage dimension, and site operators as well as access providers can enhance this experience for users” (Stafford & Stafford, 2004). The application of this finding, in combination with what research has defined as the social support sought by individuals experiencing a major health episode, is a powerful indicator of why the Internet is rapidly becoming the first line of defense following the diagnosis of a major illness.
According to research released by the Pew Internet & American Life Project in 2006, 147 million adults are now Internet users in America, and eight in 10 of those users go online for health information. Those staggering numbers reflect the usability of the Net as a tremendous health care tool. A seemingly endless amount of health care information, inspiring and hope-filled stories told using powerful audio and visual techniques, and social support is available to the user 24 hours a day, seven days a week. This offering allows patients to become their own best advocate, on their own time and in a fashion in which they learn most effectively.
To answer the question of how IT can provide a sense of community and support to someone following a major health episode, one must first examine the past and the offline solutions that have traditionally worked in order to asses the present and predict the future. The traditional face-to-face support garnered by patients have been imperative in helping to battle the kind of social isolation that can occur following diagnosis of a major illness. The literature highlights the importance of empowered and connected patients and how that sense of community and support results in better outcomes and quality of life, irregardless of the disease state at hand. The connectivity that many patients feel with others who share the same diagnosis is frequently based on the notion that they are both “experts” who speak the same language.
While computer-mediated health care communication adds a layer of technology to the situation, it is the needs of the user, and the way those needs are gratified, which drive the user to seek help online. The literature profiles patients as needing social support and connectivity following diagnosis of a serious illness and, according to Stafford and Stafford, that is exactly what is offered in their expanded version of the Uses and Gratification Theory.
The IT advancements made over the last 25 years has expedited the evolution from face-to-face social support and information gathering to Internet-based activities of the same kind. Someone now experiencing a health crisis can, prior to visiting the doctor, retrieve essential health information online via a credible Web site, spend time in a chat room gathering advice and encouragement, and then find inspiring online, digital storytelling featuring someone diagnosed with the same disease who has gone on to lead a meaningful life; storytelling that offers hope.
This kind of experience, one that prior to the Internet would have taken hours if not days and included a trip to a local support group (if one existed), a visit to the library and the rental of a movie, is now available from the comfort of a user’s home, at any time of the day or night, and with the option of complete anonymity.
How can Internet technologies improve on this scenario? The literature discusses issues of online health technology that warrant addressing in order to more fully meet the needs of those living with a chronic illness or major health issue. In the next section, we will look at the current state of that technology and assess the usability of the Internet’s health care social support systems. The U&G Theory will continue to guide this discussion in addition to Rogers’ Diffusion of Innovation Theory.
Today’s technology paints tomorrow’s predictions and so, in Part II of this report, we will take a closer look at the current state of IT mediated health communication, including:
• The use of E-meetings for new mothers as an example of telehealth in action. This study emphasizes the need of technological advances to meet the logistical and pragmatic needs of the user;
• Videoconferenced support-group meetings for breast cancer patients who live a significant distance away from a professionally-led support group;
• The use of instant messaging between a patient and a support person – a friend, a family member – and the impact of that interaction on psychological well-being;
• The role of IT-mediated health communication between hospice and home-bound caregivers;
• The impact of telehealth and its ability to deliver the most up-to-date health information to chronically-ill patients living in rural areas; and,
• The current state of the digital divide.
Part II of the paper will conclude with predictions for the future, asking: Which cutting-edge, technological advances are poised to alter the IT-mediated health care system? How will IT continue to morph in response to the needs of the user? What are the economic implications of the aging babe-boom generation and its increasing reliance on the Internet for help with health care issues?
ANNOTATED BIBLIOGRAPHY
Carmack Taylor, C. L., Kulik, J., Badr, H., Smith, M., Basen-Engquist, K., Penedo, F. & Gritz, E.R. (2007). A social comparison theory analysis of group composition and efficacy of cancer support group programs. Social Science & Medicine, 65, 262-273.
Retrieved November 2 from ProQuest database.
Carmack Taylor et. al. conducted research examining the efficacy of combining non-distressed cancer patients and distressed patients in group-based psychosocial programs. They found that the presence of non-distressed patients within the group provided good modeling of coping skills and a hopeful outlook despite the diagnosis. Their work also uncovered, however, the lack of efficacy for the non-distressed patients in the group and, indeed, there may some indication that attending a heterogeneous group in regards to coping styles may be detrimental to the outlook of the non-distressed patients. The finding begs an ethical question: Is it appropriate to bring the two different kinds of cancer patients together in the hopes of encouraging those deeply distressed at the sake of patients already coping in a healthy way? The issue becomes a moot point online if the cancer patient who is effectively coping provides a role modeling via digital storytelling.
Cotten, S. R. (2001). Implications of Internet technology for medical sociology in the new millennium. Sociological Spectrum, 21, 319-340. Retrieved from ProQuest October 29, 2007.
Cotton maintains that the existing literature and research on the effects of social support on health do not take into account, to the full extent that it should, the impact of the Internet. She examines how the Internet’s power as an information-gathering tool, one that opens the door to chat rooms and forums offering social support, is also a time-management tool for someone diagnosed with a major illness, as well as their health-care providers. She also discusses the ways in which the Internet empowers patients to manage their own care and emotional needs by taking advantage of the Internet’s 25/7 availability, something that compensates for the mobility, geographic and temporal issues that many times plague the seriously ill.
Gilat, I. & Shahar, G. (2007, Spring). Emotional first aid for a suicide crisis: Comparison between telephonic hotline and Internet. Psychiatry, 70(1), 12-18. Retrieved November 3 from ProQuest database.
The authors are interested in the effect of telephone-mediated support and IT-mediated support as emotional support for people contemplating suicide. The finding are of interest to this paper in that there appears to be a telling difference between the efficacy of phone and asynchronous online support groups versus online chatrooms. Asynchronous messages can be accessed any time, provide the group dynamic that those contemplating suicide find most reassuring, allow for complete anonymity, allow time for thoughtful responses provide a record of the conversation. The authors use these factors in determining that asynchronous online support groups are more effective than even the telephone in giving troubled adolescents a place to go with their suicidal feelings. The same issues troubled adolescents find so reassuring about this online resource can be directly applied to individuals seeking reassurance online following the diagnosis of a major illness.
Holley, U. (2007). Social isolation: A practical guide for nurses assisting clients with chronic illness. Rehabilitation Nursing, 32(2), 51-56. Retrieved November 3 from ProQuest database.
Written by a nurse, for nurses, Social Isolation: A practical guide for nurses assisting clients with chronic illness, highlights the important role that nurses play in identifying chronically-ill patients who may be at risk for social isolation. Holley recommends letting the patient, rather than a set of criteria, determine whether or not social isolation is occurring. The author then uses Biordi’s description of the four levels at which social needs exist: the self, close confidents, organizations and, finally, the community. Holley makes several recommendations outlining how nurses in the field can help patients combat isolation. Those recommendations include encouraging patients to seek out peer counseling and support groups, rebuilding family networks, and enhancing spirituality. All meant to happen face-to-face, each one has an online counterpart that can supplement a patient’s needs and is a part of the future of telehealth around the world.
Humphreys, K. & Noke, J. M. (1997). The influence of posttreatment mutual help group participation on the friendship networks of substance abuse patients. American Journal of Community Psychology; 25(1), 1-16. Retrieved November 1 from the
ProQuest database.
The granddaddy of all mutual help groups (MHG) is the 12-step model used by Alcoholics Anonymous, Narcotics Anonymous, Al-Anon and many, many others. This one-year longitudinal study found that 12-step programs create deep friendship bonds among users. Examining the “why” of these findings, Humphreys and Noke surmise that the personal experiences the members of these programs share with each other in regards to their addiction create a kind of foxhole mentality. Akin to the bonds developed when soldiers survive a battle together, these shared experiences seem to create a world in which those who live there speak the same language and come from the same family. The same holds true for cancer patients, as evidenced by Web sites such as Planet Cancer and Gilda’s Club. The strength of those bonds and that shared language become an important element when trying to understand how IT might work best to create a sense of community for users living with a major health issue.
Pew Internet & American Life Project. (2006, May). Finding answers online in sickness and in health. Washington D.C.: Pew/Internet. Retrieved November 8 from ProQuest database.
This May 2, 2006 report focuses on the seeming disparity between the use of the Internet for shopping, the pursuit of hobbies and job performance versus using the Net to glean important health information when one becomes the caregiver of someone facing a serious illness. Only 10 percent of Americans said the Internet played a key role in providing information to them in their job as caregivers for a loved one or a friend, while between 33 and 35 percent of Americans say online resources have improved their ability to shop, pursue hobbies and do their job. The study suggests that the numbers may be misleading in trying to understand the relevance of the Internet when serious illness strikes. Although the numbers look low, the impact of what the Internet has to offer is significant as illustrated by follow-up questions to the study’s major points.
Pew Internet & American Life Project. (2006). Online health search 2006. Washington, D.C.: Pew/Internet. Retrieved November 8 from ProQuest database.
This October 29, 2006 study examined how individuals using the online resources for health information went about that process. Conducted by Princeton Survey Research Associates for the Pew Internet & American Life Project, it involved telephone interviews with more than 2900 American adults, age 18 and over. The study asked users about Internet searches in 17 different health-related categories. The conclusions of the survey focused on two results: 1) Using a search engines seems to be the first step for users trying to get health information online; and, 2) A startling small percentage of users check the source or date of the information they find. The statistics in the study provided good bones on which to hang a meaty discussion of the role that Internet technologies play in shaping a sense of isolation following a major health episode.
Stafford, T., Stafford, M., & Schkade, L. (March, 2004) Determining uses and gratifications for the Internet. Decision Sciences. 35(2), 259-289. Retrieved October 14, 2007 from ProQuest database.
Scholars have studied media uses and gratification (U&G) for decades, but the evolution of the Internet has encouraged further study of the U&G theory as it applies to online issues. The authors of this paper use the established U&G theory used to study radio and television and, through a series of original, quantitative studies, uncover a third motivation that applies specifically to consumer use of the Internet. In addition to process and content gratification, they have determined that users of the Internet are also motivated by social gratification. This essential piece of information becomes paramount in the examination of how IT can encourage a sense of community for people experiencing a health crisis. The U&G theory is the filter through which the question will be examined, and inclusion of what researchers have long suspected to exist, a social gratification element, makes the discussion more reflective of what is actually happening online with health communities and health information gathering.
Nine Lives 
