Cancer survivors information seeking behaviors: A comparison of survivors who do and do not seek information about cancer

https://doi.org/10.1016/j.pec.2006.08.015Get rights and content

Abstract

Objective

To examine the cancer information seeking behaviors and preferences of cancer survivors.

Methods

This cross-sectional study used the National Cancer Institute's 2003 Health Information National Trends Survey data to evaluate 619 cancer survivors.

Results

Two-thirds (67.5%, n = 418) of the survivors sought cancer information (InfoSeek) and 32.5% (n = 201) did not (NoInfoSeek). Significant predictors of cancer information seeking included age (less than 65), gender (female), income (>US$ 25,000/year), and having a regular health care provider (HCP).

Conclusion

Not all survivors actively look for cancer information. Although most survivors prefer receiving cancer information from their HCP, many turn to a variety of other sources, primarily the Internet.

Practice implications

HCPs should periodically assess information seeking behaviors and preferences of cancer survivors and actively refer patients to the Internet as an extension of and enhancement to their patient interactions. Credible and useful websites could be identified and recommended by the HCP as a means to address some of the barriers identified by survivors.

Introduction

When confronted with a potentially life threatening illness such as cancer, information may provide needed knowledge about the disease, treatment, and self-care management. It may also facilitiate coping by mediating uncertainty and anxiety and by providing social support [1], [2], [3], [4], [5], [6]. Information seeking is the purposive acquistion of information from selected information carriers [7].1 Exploring the factors that influence individuals’ cancer information seeking (or avoiding) behaviors or actions is important when developing cancer communication interventions.

The information needs of cancer survivors were first documented by Cassileth et al. [8] in a study of 256 recently diagnosed cancer patients. Cancer patients desired information about diagnosis (type, stage, location), treatment and treatment goals, side effects, and impact on quality of life. Information preferences were associated with age, education, race, and medical status. Since that seminal study, a number of others have explored the information needs of cancer survivors [5], [11], [12], [13], [14], [15], [16], [17], [18], [19]. These studies identified other patient factors that influenced information needs including gender, employment status, coping style, type of cancer, and time since diagnosis. Many of these studies documented the now prevailing paradigm: the majority of cancer survivors desire as much information as possible about their disease and treatment [8], [14], [16]. However, not all survivors want that much information. The amount and timing of information desired varied in those with a blunting style (avoiding threatening information) or for those trying to maintain hope [5], [11], [12], [18], [20], [21], [22], [23], [24].

Information source preferences among cancer survivors have been explored in a number of studies [17], [25], [26], [27], [28]. The preferred source of information has been identified in most of these studies as interpersonal communication with the physician or health care provider. Other mediated sources, including the Internet, used alone or in combination, were also selected.

A number of literature reviews were conducted regarding cancer information seeking behaviors among cancer patients and their families [4], [10], [29], [30], [31]. With few exceptions, most studies included in these reviews were descriptive and cross-sectional in design and reported information needs and behaviors from relatively newly diagnosed cancer patients (first year or two).

Many health behavior models include beliefs and knowledge as important variables in understanding and promoting behavior change. The comprehensive model of information seeking (CMIS) is a conceptual model linking information seeking with health behavior models and has three major components: antecedents, information carrier factors, and information seeking which may then act together with other health behavior models. [7] Antecedent factors include demographics (gender, age, race/ethnicity, education, and socioeconomic status), direct experience (including personal and social networks), salience (perceived applicability to the problem at hand) and beliefs (about lack of knowledge, self-efficacy, cancer). These antecedent factors influence the need for information and the information channel preferences. Information carrier factors relate to channel selection, either interpersonal (health care providers, family, friends) or mediated (print, electronic, mass media), and channel usage. The utility or usefulness of the channel selection is related to the information seeker's needs, expectations, and accessibility. Information seeking actions may be passive or active, seeking or avoiding [24], [32]. These actions may then interact with or become part of other health behavior models. Health information seeking or avoidance has the potential to moderate perceived health threats (severity and susceptibility), provide cues to action, and influence psychological and behavioral outcomes [4], [7], [9], [33]. This may be useful when designing interventions to promote healthy lifestyle behaviors in cancer survivors. For example, Perry and Bauer [54], using the Health Belief Model and stages of change, developed, and tested compuer generated printed tailored messages regarding vegetable intake for breast cancer survivors. The experimental group improved vegetable consumption and moved forward in their stage of change.

The purpose of this study was to examine the antecendent and information carrier factors associated with different information seeking behaviors or actions of cancer survivors. This is a secondary data analysis utilizing the National Cancer Institute's (NCI) Health Information National Trends Survey I (HINTS I), a national survey about the public's use of cancer-related information [34]. Specific research questions for this study are:

  • What are the differences between survivors who do and do not seek cancer information?

  • What are the preferred sources of information of cancer survivors who do or do not seek cancer information?

Section snippets

Methods

This is a cross-sectional, correlational study using the NCI's 2003 HINTS I database [35]. HINTS was designed to collect nationally representative data every 2 years focused on cancer communications, cancer information seeking preferences and behaviors, knowledge about cancer, perceived susceptibility, severity, benefits and barriers, cancer-related behaviors, risk reduction, screening behaviors, general health, and data on personal cancer experience [35]. The first wave of HINTS data was

Antecedent factors: differences between information seekers and nonseekers

The typical cancer survivor was Caucasian, employed, married, and female, had at least a high school education, a regular health care provider and health insurance (Table 1). The mean time since a cancer diagnosis was 10.5 years for InfoSeek and 12.5 years for NoInfoSeek (p = .05). These groups were, however, significantly different (p < .05) on a number of factors. The NoInfoSeek group was older (p < .001), had less education (p < .001) and income (p < .001). They also had a smaller proportion reported

Discussion

The comprehensive model of information seeking provided a conceptual model to explore information seeking behaviors of cancer survivors and associated antecedents and information carrier factors of survivors who did and did not seek cancer information. Two out of three cancer survivors sought cancer information in an analysis of 619 cancer survivors. Differences were found between those who did and did not seek information in both antecedent and information carrier factors. Age, gender, income,

Acknowledgements

D. Mayer was the recipient of doctoral scholarships from the American Cancer Society 04-22901 and ONS Foundation and a National Service Research Award from the National Institute of Nursing Research NR09137-01A1 and was partially funded by NCI training grant R25 CA093831 (Kathi Mooney, PI). The authors thank Dr. Richard Moser and Dr. Bradford Hesse of the National Cancer Institute for their expert assistance with the HINTS database, Robert Rosofsky for programming assistance, Kathy Pikosky and

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