|
Article Excerpt
The use of the Internet for health education has reached what many might consider a critical mass. According to the National Cancer Institute's Health Information National Trends Survey (Nelson et al., 2004), among women who have had breast cancer, the Internet is second only to their healthcare providers as a first choice for where they would go to obtain cancer information. As an increasing number of breast cancer patients turn to the Internet for health education and support, concern over its effect on their health behavior and quality of life has grown. Encouragingly, there is a growing body of evidence indicating that Interactive Health Communication Systems (IHCSs)--including the Comprehensive Health Enhancement Support System (CHESS)--which is the focus of this study, contribute to significant improvements in quality of life, participation in healthcare decisions, and effective use of healthcare services for those facing life-threatening illness or chronic disease (Gustafson et al., 2001, 2002, 2005; Hawkins et al., 1997). For example, in one intervention study, Gustafson et al. (2001) compared CHESS group to a control group and found that women in the CHESS group had significant benefits, including competence in dealing with health information, comfort in participating in their health care, and greater confidence in their doctor. Furthermore, a more recent study by Gustafson et al. (2005) focused exclusively on low-income breast cancer patients. When women from this study were compared to a low-income control group from another study, the CHESS group also expressed significant improvements in social support, reduction in negative emotions, participation in health care, and competence in dealing with health information.
However, effects of CHESS or any other IHCS are generally demonstrated through experimental designs in which a whole group given access to such a system is contrasted with a control group with or without access to traditional modes of information such as audiotapes, videos, or books (i.e., an "intention-to-treat" approach that treats all members of an experimental group as equally exposed to that intervention regardless of whether they actually used it or not). Although such designs do test efficacy, they typically do little to explain how the effects occur. That different designs or additional analyses are necessary to probe processes and provide explanations is commonly understood throughout research on interventions, but several particularly important issues with IHCSs, all centering around "use," deserve special attention. Clearly, a first concern with an intent-to-treat approach is that only some patients employ a system at all, and presumably only those who do so could be affected. But even within those who do access an IHCS, defining what constitutes "use" and especially what aspects of use are efficacious are much more subtle problems.
One common approach, borrowed from mass communication, tests for a simple monotonic relationship between amount of use of a system and likely effects (Pingree et al., 1996; Shaw et al., 2007). An implicit assumption of such an approach may be that more use will produce better health outcomes because it represents exposure to more IHCS content. Such an approach has long been recognized as problematic for many, though not all, effects of mass communication (Hawkins & Pingree, 1981; Salomon & Cohen, 1978; but note Gerbner, Gross, Morgan, Signorielli, & Shanahan, 2002). As with traditional mass media, one key reason this overall monotonic approach has not worked well to explain effects of IHCS is because such systems typically contain a variety of content, some of which may be more beneficial than others, and thus an overall amount of use has little practical meaning (Chory-Assad & Tamborini, 2003; Johnson, Braima, & Sothirajah, 2000).
For example, a qualitative study of HIV/AIDS patients' CHESS use (Smaglik et al., 1998) noted that many users who spent the most time with the system actually benefited very little or not at all, because their use was exclusively concentrated in the bulletin-board Discussion Group feature. In contrast, those who improved most from pretest to post-test used the system much less overall, but use of information-based services was a far higher proportion of their overall use. Thus, one key question for large and complex IHCSs is just which parts are beneficial; perhaps only parts of the whole system are necessary and could be provided to patients more cost effectively than the whole program.
Smaglik et al. (1998) further noted that successful users seemed to be focused and systematic in pursuing topics across multiple CHESS services and using it over time, rather than browsing or using the system on only a few occasions. While that observation was based on system use by only a few patients, it does suggest that how a patient uses a system may also be quite important. After all, unlike traditional and linear mass media such as television and radio, web content is not delivered uniformly to users in separate units of time (Jung, Qiu, & Kim, 2001). That is, IHCS users effectively create the content they use through searching, selecting portions of content and not others, taking things in their own order, and sending/receiving messages, all in accordance with personal interests (Newhagen & Rafaeli, 1996). And although it would be difficult to track this in practice, it is also likely that patients do so individually in changing ways corresponding to the shifting information and support needs posed by their individual disease and treatment progression.
In fact, this underscores the more general idea that any knowledge gleaned from an IHCS is only potential, and benefits are contingent upon the activities of the user. What patients actually do within an IHCS is of critical importance, since the IHCS's effectiveness will largely depend on users' efforts to actively locate desired content and then to utilize such information and support for decision making and coping with their illness (Turk-Charles, Meyerowitz, & Gatz, 1997). Thus, as part of an effort to understand uses and effects of an IHCS, the current study employs diverse measures of IHCS use, distinguishing amount, type of content, and when and how that content is used as predictors of quality-of-life benefits during a CHESS intervention. This line of research inquiry is both theoretically and practically valuable as it increases understanding about what makes IHCSs effective, and provides insights about how systems can be enhanced to more effectively help those facing life-threatening illnesses.
Potential Content Variation: CHESS Service Types and Processes
In order to provide insights about how women diagnosed with breast cancer use and benefit from a particular IHCS, the CHESS "Living with Breast Cancer" program, types of CHESS services along with explanations about what makes these types of services theoretically distinct, were further explicated. But because this IHCS is a system of many resources, ranging across the full gamut of the breast cancer experience, and is typically used by a patient repeatedly over time, classifying content as one might within a typical mass medium (e.g., entertainment vs. information, comedy vs. drama vs. reality, or distinguishing which topic was the subject of the exposure) seems likely to be less useful. Instead, this study distinguishes among three functional roles the computer system plays for the user. Table 1 summarizes these classifications.
Information Services
Information services within CHESS are similar to the primary communication strategy used in most health-education Web sites. They are user-driven in the sense that the user is the primary determinant of where the individual goes and what the individual sees, and the computer is largely passive in the delivery of information to the user. Examples of this would be Library Articles or Frequently Asked Questions where the user asks to see articles on certain topics, or Personal Stories where the user can read about the experiences and thoughts of other individuals who faced the same sorts of challenges. The user selects these services, indicates the kind of information the individual wants, and the computer delivers the information via text, audio or video files. Therefore, this study posits that use of Information services may primarily encourage learning and psychological competence in dealing with information and health care providers.
Communication Services
Communication services serve a conversational function in which the computer links people so that they can communicate with one another. In this strategy, the computer serves as a link between people so that interpersonal functions such as support, teaching, and conversation may occur. Research indicates that emotional, informational, and instrumental support from others can be valuable to people coping with a chronic illness (Gray, Fitch, Davis & Phillips, 1997). Patients can not only share information about their own experiences with breast cancer so other women know what to expect, but also receive strong support from others as a result of others expressing understanding and empathy (Preece & Ghozati, 2001).
In CHESS, Discussion Group is a text-based, asynchronous bulletin board allowing users to anonymously share information and support. Historically, the Discussion Group service has consistently been by far the most frequently used service within CHESS (McTavish, Pingree, Hawkins & Gustafson, 2003). Groups are monitored by a trained facilitator to ensure that discussions are supportive and do not contain unchallenged inaccurate or harmful information, though the facilitator does not take an active role in guiding the topics of communication and very rarely intervenes. Communication services also include...
|
