A model for understanding and affecting cancer genetics information seeking
Introduction
The concept of everyday life information seeking (ELIS), as outlined by Savolainen (1995), suggests the type of information seeking that individuals engage in to solve problems or orient themselves in daily life, and which are not necessarily directly related to their occupational information tasks. A promising area for elucidating this process is studying how people approach information seeking for health-related problems. Health issues are nontrivial and have a wide variety of situational dimensions, ranging from learning preventive actions to confronting a chronic health episode. Thus, an important role of health information seeking is that it allows individuals to cognitively and behaviorally attempt to gain control over health-related events (Lenz, 1984). In the context of cancer, an ever-increasing number of cancer-fighting measures means that individuals must empower themselves with information that is most relevant to them (Johnson, 1997a). People confronting cancer are facing new information-seeking challenges because of the rapid advances in genetic mapping and genetic testing, which are anticipated to continually accelerate in the near future. This implies that an enduring intervention strategy is needed to help people find authoritative information now and in the future.
This article explores how people look for cancer-related information and how the explosion in information related to cancer genetics will impact their everyday information-seeking behavior. GENIS2 (Genetic Information-Seeking Skills) is a cancer genetics information-seeking intervention approach. This approach is built upon the Comprehensive Model of Information Seeking (CMIS). GENIS2 is being developed to increase the effective delivery of authoritative and timely information to people in different situational contexts that reflect their proximity to cancer. The GENIS2 focus on information seeking contrasts directly with most health information campaigns that view the world as rational and known, and which concentrate on controlling individuals to seek values of efficiency and effectiveness (e.g., Rice & Atkin, 1989). Instead, GENIS2 addresses issues similar to Savolainen's (1995) notions of way of life and mastery of life by focusing on the process of information seeking rather than just on the results of the search.
Section snippets
ELIS
To capture the nuances of ELIS behavior, one can look at a person's way of life (Savolainen, 1995), which refers to a person's everyday activities and the value the individual assigns to each of these activities. Based on these values, people decide the order that these activities will be addressed in terms of information gathering. However, an individual's values can change over time. In the case of health issues, these values are likely to be dictated by the proximity of the health problem;
Cancer genetics as an ELIS activity
Cancer genetics information is of vital importance for the management of the disease. According to Klausner (1996), “We have learned that cancer is, at its core, the consequence of alterations in DNA—that cancer is a genetic disease. Genetic information has the potential to transform how we prevent, detect, and treat cancer” (p. 36). The U.S. public is also increasingly interested in issues surrounding genetics and genetic testing, and individuals are aware these advances may affect their
The consumer movement in health information
The literature suggests that there are potentially high levels of interest in obtaining personal genetic information (Lerman et al., 1999), but not enough human resources for personalized mediated searches (Condit, 1999). Increasingly, the responsibility for health-related matters is passed to the individual, with patients taking more active roles in decisions affecting health care, with concomitant improvements in the attitude and mental state of patients Harris, 1998, Johnson, 1997b, Muha &
The focus of GENIS2
GENIS2 addresses the information-seeking paradox seen in earlier studies, which indicate people are less likely to look for information as their proximity to cancer increases (Degner & Sloan, 1992). This appears irrational because it is likely to be the time when information could be most beneficial and result in reduced morbidity and mortality Cassileth et al., 1980, Johnson, 1997a. The GENIS2 framework addresses this paradox by perceiving a health problem as an “unwelcome guest.” It is
The CMIS
This brief review of the CMIS also points out how GENIS2 is modified for cancer genetics information. Research on the CMIS suggests it provides the “bare bones” of a causal structure, although the nature of the specific relationships contained in the model appears to be context dependent. The CMIS focuses on the antecedents that explain why people become information seekers, the information carriers that shape the intention to seek information, and the information-seeking actions that determine
The stages of GENIS2
GENIS2 adopts the CMIS concept of stages by conceiving cancer genetic information seekers as in one of four stages of “involvement” with cancer threat. The stages are summarized in Table 1. A stage describes a person's proximity to the disease. Stages also incorporate the two dimensions of information in ELIS—orienting and practical (Savolainen, 1995). At each stage, people are faced with different information needs and with different levels of emotion that impact their information seeking. In
Framework for GENIS2 information-seeking interventions
Cancer-related information seeking is often a great challenge to individuals. People need to believe that their individual actions can make a difference and that information seeking can help them gain mastery over their problems. Also, individuals have to overcome limitations of education and prior experience: they have to possess skills as information seekers, a knowledge of databases, familiarity with the Internet, weigh conflicting sources of information, and make judgments about their
Conclusion
The central assumption underlying GENIS2 is that information seeking is a key moderator between perceived threats of disease—including genetic predisposition—and the likelihood of taking action (e.g., generalized information seeking, or genetic counseling or testing). The scope and nature of the information on which to base medical judgments, the repertoire of alternative courses of action known to the searcher, and ultimately, the action taken are affected by individuals' information-seeking
References (64)
- et al.
Interest in learning of personal genetic risk for cancer: A general population survey
Preventive Medicine
(1996) The Health Belief Model and participation in programmes for the early detection of breast cancer: A comparative analysis
Social Science and Medicine
(1984)- et al.
The effect of experience on radiation therapy patients desire for information
Journal of Radiation Oncology, Biology, and Physics
(1980) - et al.
Decision making during serious illness: What role do patients really want to play?
Journal of Clinical Psychology
(1992) Everyday life information seeking: Approaching information seeking in the context of “way of life”
Library & Information Science Research
(1995)Information behaviour: An interdisciplinary perspective
Information Processing and Management
(1997)- et al.
Hereditary cancer risk notification and testing: How interested is the general population
Journal of Clinical Oncology
(1997) Unraveling the mystery of health: How people manage stress and stay well
(1987)The place of architectural factors in behavioral theories of privacy
Journal of Social Issues
(1977)Genome map success: Much yet to discover
Los Angeles Times
(2000, August 7)
Health promotion, disease prevention, and program retention
Anxiety and readership of health information
Journalism Quarterly
Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2
Journal of Clinical Oncology
Likelihood of undergoing genetic testing for cancer risk: A population-based study
Preventive Medicine
The Health Belief Model and compliance with education given at a class in breast self-examination
Journal of Health and Social Behavior
Looking for information: A survey on information needs, seeking, and behavior
The meanings of the gene
Quality of life and health care interventions
Knowledge seeking strategies of natural resources professionals
Bringing the models together: An empirical approach to combining variables used to explain health actions
Journal of Behavioral Medicine
Actual and intended health-related information seeking and health locus of control
Journal of Personality Assessment
Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a sociodemographically diverse sample
Journal of Behavioral Medicine
The chronically uninformed: Closing the knowledge gap in health
Searching for health information: The Cancer Information Service model
Relevance reconsidered—towards an agenda for the 21st century: Introduction to special topic issues on relevance research
Journal for the American Society for Information Science
Information needs in the sciences: An assessment
The research literature on why women delay in seeking medical care for breast symptoms
Health Education Monographs
The informational needs of patients with cancer and their families
Cancer Practice
Attitudes toward genetic testing among the general population and relatives of patients with a severe genetic disease: A survey from Finland
American Journal of Human Genetics
Factors predisposing women to take precautions against breast and cervix cancer
Journal of Applied Social Psychology
Cancer-related information seeking
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