Proposal for

Connecting Research and Practice: Special Populations

ASIST SIGUSE Research Symposium, 2005 
 
 

BREAST CANCER PATIENTS AND SURVIVORS 
 

SUBMITTED BY

Barbara M. Wildemuth

School of Information and Library Science

University of North Carolina at Chapel Hill 
 
 

      When a woman is diagnosed with breast cancer,¹ her life changes.  That life change is often accompanied by a desire for information related to the new situation (i.e., being a breast cancer patient).  One of the challenges of studying the information behaviors of this special population is that needs for information and needs for support are often confounded (e.g., 7,8,17,18,37,53).  Nevertheless, when these two types of needs were studied directly (12), they were found to be independent of each other.  Thus, it is reasonable to undertake studies of breast cancer patients’ and survivors’ information behaviors, as distinct from their needs for psychosocial support.

      In fact, many studies of this group’s information behaviors have been undertaken, including studies of their information needs, the purposes for and barriers to information seeking, and the use of various media channels.  Often these studies were focused on changes in information behaviors over time or the specific behaviors of a subset of cancer patients (or their caregivers).  Examples of this work, including broader studies of cancer patients, will be briefly reviewed here; several key literature reviews cover them in more detail (24,36,43,48).

      Information needs. A variety of approaches have been used to investigate the information needs of breast cancer patients and, occasionally, their caregivers.  Some have used inductive (generally qualitative approaches) to identify these needs (e.g., 2,16,34,47).  Others have developed and administered questionnaires or interviews; the most widely-used have been the Toronto Information Needs Questionnaire-Breast Cancer (TINQ-BC; 21,23,25); Cassileth’s Information Styles Questionnaire (6,29), and the Information and Support Needs Questionnaire (7).  Some studies have focused on particular subgroups of this population (e.g., 11,15,21-23,25,27,33,41,42,52); others on their relatives or caregivers (e.g., 3,7,8,26,45,46,51); and still others on people at risk for cancer or breast cancer (e.g., 9,14). Finally, a number of studies have examined how patient’s information needs change over time, often in relation to specific treatment events such as the beginning of radiation therapy (4,9,25,32,49).

      Information seeking.  While patients’ information needs have been studied extensively, very few studies have been conducted of the process of information seeking.  Johnson (30) used cancer patients’ status as a lens with which to investigate the context of information seeking; and Ziebland (56) investigated particular aspects of the social context of cancer patients.  The reasons why cancer patients sought information were studied by Carlsson (5) and Leydon et al. (31).  Arora et al. (1) investigated breast cancer patients’ barriers to information access and the effects of those barriers on perceived health competence and psychosocial health outcomes.  The paucity of data concerning the processes of information seeking and information behaviors undertaken by breast cancer patients (and cancer patients in general) points to a need for studies in this area.

      Media channels.  Most studies of patients’ use of various information sources have been straightforward surveys of use (3,5,10-12,17,18,28,42).  As with the studies of information needs, some studies of media use have examined particular subpopulations (32,54), including caregivers (40), or changes over time (42,49).  Some have also gathered the patient’s assessments of the different media channels, in terms of accuracy/quality (13,35), helpfulness (50), and advantages/disadvantages (44).  As with other populations, there are also some studies focusing exclusively on patients’ use of the internet (e.g., 19,20,40,55,57); and some studies have focused on other particular channels, like women’s magazines (38) or telephone hotlines (39).

      Conclusion.  As noted above, and as can be seen in even this cursory review of the literature, a large number of studies have been conducted of cancer patients’ (and, particularly, breast cancer patients’) information needs, information seeking behaviors, and information use.  One of the most interesting aspects of this body of literature is that it has been conducted almost exclusively by the researchers in medicine (particularly oncology); only two studies have been published in information science journals (30,44).  I believe that information science researchers have a lot to offer this area of investigation.  By applying some of our existing knowledge of information behaviors to this particular population, we may be able to help physicians move beyond lists of information needs or media used.  In particular, by investigating the processes of information seeking and related behaviors, we may be able to help our colleagues in Medicine better provide the information needed by this population. 
 

References

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56. Ziebland, S. (2004). The importance of being expert: the quest for cancer information on the Internet. Social Science & Medicine, 59(9), 1783-1793.
57. Ziebland, S., Chapple, A., Dumelow, C., Evans, D., Prinjha, S., & Rozmovits, L. (2004). How the internet affects patients' experience of cancer: a qualitative study. British Medical Journal, 328(7439), 564+.

¹ While it is possible for men to contract breast cancer, it is relatively rare compared to the disease’s incidence among women.  “The American Cancer Society estimates that in 2005, approximately 211,240 women in the United States will be diagnosed invasive breast cancer (Stages I-IV)… An estimated 1,690 cases will be diagnosed in men in 2005” (http://imaginis.com/breasthealth/statistics.asp). Therefore, breast cancer patients will be referred to as she/her throughout this proposal.