Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts.
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QUESTION: How have theorists and empirical researchers treated the human tendency to avoid discomforting information? DATA SOURCES: A historical review (1890-2004) of theory literature in communication and information studies, coupled with searches of recent studies on uptake of genetic testing and on coping strategies of cancer patients, was performed. STUDY SELECTION: The authors' review of the recent literature included searches of the MEDLINE, PsychInfo, and CINAHL databases between 1992 and summer of 2004 and selective, manual searches of earlier literature. Search strategies included the following subject headings and key words: MeSH headings: Genetic Screening/psychology, Decision Making, Neoplasms/diagnosis/genetics/psychology; CINAHL headings: Genetic Screening, Genetic Counseling, Anxiety, Decision Making, Decision Making/Patient; additional key words: avoidance, worry, monitoring, blunting, cancer. The "Related Articles" function in MEDLINE was used to perform additional "citation pearl" searching. MAIN RESULTS: The assumption that individuals actively seek information underlies much of psychological theory and communication practice, as well as most models of the information-seeking process. However, much research has also noted that sometimes people avoid information, if paying attention to it will cause mental discomfort or dissonance. Cancer information in general and genetic screening for cancer in particular are discussed as examples to illustrate this pattern. CONCLUSION: That some patients avoid knowledge of imminent disease makes avoidance behavior an important area for social and psychological research, particularly with regard to genetic testing. (+info)
Assessment of the National Library of Medicine's health disparities plan: a focus on Native American outreach.
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OBJECTIVES: Overcoming health disparities between majority and minority populations is a significant national challenge. This paper assesses outreach to Native Americans (American Indians, Alaska Natives, and Native Hawaiians) by the National Library of Medicine (NLM). A companion paper details NLM's portfolio of Native American outreach projects. METHOD: NLM's Native American outreach is assessed in light of the presentations at a community-based health information outreach symposium and the goals set by NLM's plan to reduce health disparities. RESULTS: NLM's current portfolio of Native American outreach projects appears most advanced in meeting the goal set in area 1 of the health disparities plan, "Promote use of health information by health professionals and the public." NLM's portfolio also shows significant strength and good progress regarding area 2 of the plan, "Expand partnerships among various types of libraries and community-based organizations." The portfolio is weaker in area 3, "Conduct and support informatics research." More knowledge-building efforts would benefit NLM, the National Network of Libraries of Medicine, and Native American and community-based organizations. IMPLICATIONS: The current Native American outreach portfolio should be continued, but new approaches are needed for evaluating Native American outreach and for forging collaborations with Native American groups, approaches grounded in consultation and mutual understanding of needs and perspectives. (+info)
The National Library of Medicine's Native American outreach portfolio: a descriptive overview.
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OBJECTIVES: This paper provides the most complete accounting of the National Library of Medicine's (NLM's) Native outreach since 1995, when there were only a few scattered projects. METHOD: The descriptive overview is based on a review of project reports, inventories, and databases and input from the NLM Specialized Information Services Division, National Network Office of the Library Operations Division, National Network of Libraries of Medicine, and Office of Health Information Programs Development of the Office of the NLM Director. The overview focuses on NLM-supported or sponsored outreach initiatives involving Native peoples: American Indians, Alaska Natives, and Native Hawaiians. RESULTS: The review of NLM's relevant activities resulted in a portfolio of projects that clustered naturally into the following areas: major multisite projects: Tribal Connections and related, Native American Information Internship Project: Sacred Root, tribal college outreach and tribal librarianship projects, collaboration with inter-tribal and national organizations, participation in Native American Powwows, Native American Listening Circle Project, Native American Health Information, and other Native American outreach projects. IMPLICATIONS: NLM's Native American Outreach reached programmatic status as of late 2004. The companion paper identifies several areas of possible new or enhanced Native outreach activities. Both papers highlight the importance of solid reporting and evaluation to optimize project results and programmatic balance and priorities. (+info)
Community-based organizations' perspective on health information outreach: a panel discussion.
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OBJECTIVE: A panel was convened to elicit guidance for librarians in initiating and implementing community-based health information outreach. PARTICIPANTS: Participants included a panel of individuals from communities or community organizations who represented the types of groups with which librarians or information specialists need to interact and an audience who represented health sciences libraries, public libraries, academic institutions, government agencies, funding agencies, and community-based organizations and could contribute to a discussion on community-based health information outreach. PROGRAM: The panel was presented with a hypothetical community setting and asked to respond to a series of questions: What do librarians need to learn about the community before they make their visits? What methods of outreach have been successful in your work? How would you implement and sustain a health information program in your community? How would health information interventions reduce racial and ethnic disparities in health? MAIN RESULTS: The panel helped to frame many of the issues that may confront librarians as they initiate information-related programs in communities. CONCLUSION: There is clear consensus on the need for librarians to make the effort to reach out into the community, to make the contacts, to seek to understand the community, to talk with leaders, and to respect the community as they promote and teach the use of health information resources. It was confirmed that librarians and libraries have an important role in diminishing health disparities by improving access to health information. (+info)
"Smallball" evaluation: a prescription for studying community-based information interventions.
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OBJECTIVES: This paper argues that focused evaluation studies of community-based informational interventions conducted over the life-cycle of the project ("smallball" studies) are more informative and useful than randomized experiments conducted only at the project's conclusion ("powerball" studies). METHOD: Based on two contrasting strategies in baseball, smallball and powerball studies are compared and contrasted, emphasizing how the distinctive features of community-based interventions lend advantage to smallball approaches. RESULTS: Smallball evaluations have several important advantages over powerball evaluations: before system development, they ensure that information resources address real community needs; during deployment, they ensure that the systems are suited to the capabilities of the users and to community constraints; and, after deployment, they enable as much as possible to be learned about the effects of the intervention in environments where randomized studies are usually impossible. IMPLICATIONS: Many in informatics see powerball studies as the only legitimate form of evaluation and so expect powerball studies to be done. These expectations should be revised in favor of smallball studies. (+info)
Community outreach: from measuring the difference to making a difference with health information.
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BACKGROUND: Community-based outreach seeks to move libraries beyond their traditional institutional boundaries to improve both access to and effectiveness of health information. The evaluation of such outreach needs to involve the community in assessing the program's process and outcomes. PURPOSE: Evaluation of community-based library outreach programs benefits from a participatory approach. To explain this premise of the paper, three components of evaluation theory are paired with relevant participatory strategies. CONCEPTS: The first component of evaluation theory is also a standard of program evaluation: use. Evaluation is intended to be useful for stakeholders to make decisions. A useful evaluation is credible, timely, and of adequate scope. Participatory approaches to increase use of evaluation findings include engaging end users early in planning the program itself and in deciding on the outcomes of the evaluation. A second component of evaluation theory seeks to understand what is being evaluated, such as specific aspects of outreach programs. A transparent understanding of the ways outreach achieves intended goals, its activities and linkages, and the context in which it operates precedes any attempt to measure it. Participatory approaches to evaluating outreach include having end users, such as health practitioners in other community-based organizations, identify what components of the outreach program are most important to their work. A third component of evaluation theory is concerned with the process by which value is placed on outreach. What will count as outreach success or failure? Who decides? Participatory approaches to valuing include assuring end-user representation in the formulation of evaluation questions and in the interpretation of evaluation results. CONCLUSIONS: The evaluation of community-based outreach is a complex process that is not made easier by a participatory approach. Nevertheless, a participatory approach is more likely to make the evaluation findings useful, ensure that program knowledge is shared, and make outreach valuing transparent. (+info)
Using evaluation to adapt health information outreach to the complex environments of community-based organizations.
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OBJECTIVE: After arguing that most community-based organizations (CBOs) function as complex adaptive systems, this white paper describes the evaluation goals, questions, indicators, and methods most important at different stages of community-based health information outreach. MAIN POINTS: This paper presents the basic characteristics of complex adaptive systems and argues that the typical CBO can be considered this type of system. It then presents evaluation as a tool for helping outreach teams adapt their outreach efforts to the CBO environment and thus maximize success. Finally, it describes the goals, questions, indicators, and methods most important or helpful at each stage of evaluation (community assessment, needs assessment and planning, process evaluation, and outcomes assessment). LITERATURE: Literature from complex adaptive systems as applied to health care, business, and evaluation settings is presented. Evaluation models and applications, particularly those based on participatory approaches, are presented as methods for maximizing the effectiveness of evaluation in dynamic CBO environments. CONCLUSION: If one accepts that CBOs function as complex adaptive systems-characterized by dynamic relationships among many agents, influences, and forces-then effective evaluation at the stages of community assessment, needs assessment and planning, process evaluation, and outcomes assessment is critical to outreach success. (+info)
Disseminating relevant health information to underserved audiences: implications of the Digital Divide Pilot Projects.
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OBJECTIVE: This paper examines the influence of the digital divide on disparities in health outcomes for vulnerable populations, identifying implications for medical and public libraries. METHOD: The paper describes the results of the Digital Divide Pilot Projects demonstration research programs funded by the National Cancer Institute to test new strategies for disseminating relevant health information to underserved and at-risk audiences. RESULTS: The Digital Divide Pilot Projects field-tested innovative systemic strategies for helping underserved populations access and utilize relevant health information to make informed health-related decisions about seeking appropriate health care and support, resisting avoidable and significant health risks, and promoting their own health. IMPLICATIONS: The paper builds on the Digital Divide Pilot Projects by identifying implications for developing health communication strategies that libraries can adopt to provide digital health information to vulnerable populations. (+info)