The intersection of information behavior and coping among women undergoing breast lump diagnosis
Few studies have examined the intersection of information behavior and coping of women during the time period between the discovery of a breast lump and receiving a diagnosis. Those that do look at particular segments of this time without taking the full period into consideration, leaving a gap as to the range of behaviors that may occur throughout the waiting period. This study sought to understand how information behavior interacts with the coping strategies of women who undergo the potentially stressful experience of waiting for a breast lump diagnosis.
Health-related information seeking is associated with many factors, including demographics, prior personal experience with health issues, and personal style of information seeking (Johnson, 1997). Individuals faced with potentially life-threatening health conditions often have different needs for information depending on the ways in which they perceive and cope with stressful situations (Case, 2007). Although some may actively gather information, others may turn away from it in an effort to maintain some sense of personal equilibrium (Baker & Pettigrew, 1999; Brashers, 2001; Case, Andrews, Johnson, & Allard, 2005; Miller, 1995).
This study examined the information behavior of women between the discovery of a lump in the breast and a definitive diagnosis (e.g., whether the lump is malignant or benign). Detection can occur in various ways, such as self-examination, physician examination, mammogram or sonogram, setting off a range of coping and informationseeking activities. The diagnostic period varies from a few days to a few weeks, depending on how the lump is found, how soon diagnostic procedures are scheduled, and how quickly results are received. During this period women know that there is potentially a problem, but it is difficult to know how to address it without knowing the diagnosis. Several studies report that women experience considerable anxiety and uncertainty while awaiting diagnosis (Hughson, Cooper, McArdle, & Smith, 1998; Montazeri, et al., 2000; O'Mahony, 2001; Shaw, Wilson, & O'Brien, 1994; Thorne, Harris, Hislop, & Vestrup, 1999), which influences the types of information sought (Chappy, 2004; Deane & Degner, 1997) and the ways in which information mediates coping and social support (Deane & Degner, 1998; Poole & Lyne, 2000).
While a number of studies have investigated coping strategies and uncertainty management during this time period, only a few have integrated coping and uncertainty with information behavior (Chappy, 2004; Deane & Degner, 1997, 1998; Fridfinnsdottir, 1997; Poole & Lyne). Of these studies, only Fridfinnsdottir (1997) investigated the entire period between finding a lump and receiving diagnosis, while the others examined specific instances of the diagnostic experience. For example, Chappy (2004) interviewed women primarily about their experiences before, during and after biopsy, while Deane and Degner (1998) described the information needs only of women who had had benign outcomes. Poole & Lyne (2000) specifically investigated the monitoring activities of women undergoing diagnosis. Moreover, studies examining information behavior describe information-seeking behavior, but do not account for instances where women do not seek information, nor do they discuss information sources. As a way to expand on existing knowledge as well as account for the full diagnostic period, this retrospective study investigated the experiences of women undergoing breast lump diagnosis to identify common themes in how information behavior interacts with coping strategies.
Three research questions guided the study:
- 1.How do women cope during the time between finding a breast lump and receiving the diagnostic results?
- 2.What kinds of information do women look for during this time and where do they seek information?
- 3.How does information interact with coping behavior, uncertainty, and emotional status?
Women were recruited through an online listserv associated with a large Midwestern university. The study comprised two phases: (a) an online survey of 54 women who had undergone breast biopsies within the previous five years, and (b) in-depth, semi-structured interviews of ten women drawn from the survey respondents.
The survey specifically asked women for information related to the time between having a breast biopsy and receiving a diagnosis. The survey consisted of both closed-ended and open-ended questions inquiring about demographics, social networks and support, emotions, coping with uncertainty, and information needs and resources. Women who participated in the survey were given the option to enter into a “Thank You Lottery” for a chance to win one of four $50 prizes.
At the end of the online survey, respondents were offered the opportunity to participate in in-depth, open-ended interviews, for which they would be paid $25. Interviewees were chosen based on their survey answers, primarily if it seemed as though they could expand on information found through the survey. Some of the areas that invited additional investigation included the ways in which women used information as a means of coping, including decisions not to seek information as well as differences between women who stayed calm and those who frantically searched for as much information as possible.
Survey respondents ranged in age from 25 to 69; 38 were either married or with a partner, 10 were divorced, five were single and one designated “other.” Twenty women had children living at home, and 36 were college graduates or had a graduate degree. Forty-four were Caucasian, six were African-American, three were Latina, and one was Asian. Thirty-six women had benign diagnoses, nine were malignant, three were in situ (non-invasive), two were inconclusive, and four did not respond to the question requesting diagnosis information. The ten women who participated in interviews ranged in age from 27 to 56. Nine were married or with a partner and one was single; seven were college graduates or had a graduate degree while three had some college education. Eight were Caucasian, one was African-American and one was Latina. Six had benign diagnoses, three malignant and one inconclusive.
Findings from the survey showed that 39% of respondents did not look for information about breast cancer, while 59% did and 2% stated that they did not remember. These statistics were reflected among the women interviewed as well, where three out of ten did not look for information. Women who did not look for information reported that they did not do so for several reasons, including “I wasn't going to put any energy into thinking that I had breast cancer”; “I was afraid to find out I may have all the symptoms”; or “I didn't even think about that it would be malignant at all.” In these representative cases, information avoidance played multiple roles, at times staving off anxiety but at other times being the result of respondents' believing there was no information gap. Respondents who did look for information described it as a way to better understand their experience and possible treatment options, as well as to maintain calm or decrease fearfulness.
Among survey respondents who sought information, the most prominent sources were the Internet (90%), friends (45%), and other women who had had breast cancer or biopsies (45%). Interview participants confirmed these responses, also noting that women who had been through the experience were particularly helpful as sources of information and social support. However, despite the Internet being a major source of information, women were equivocal about its helpfulness, making statements such as “[The Internet] gave symptoms and diagrams that I could relate to easily, and felt a little sense of control if I could understand what was going on,” and “While having the facts is nice, it's easy to self-diagnose using these sources and make yourself completely crazy.”
The experience of women undergoing breast lump diagnosis represents a multi-faceted spectrum of information needs and information behavior, which influences and is influenced by the ways in which women cope with and understand their personal situations. Emotions about the experience of potential breast cancer played a large role in the interplay between coping and information, influencing some women to obtain as much information as possible while inhibiting other women from seeking information at all. Moreover, seeking information was not always viewed as a means of better adjustment to the experience. Current and future work will concentrate on understanding exactly how different elements of information seeking and coping interplay within this experience, and examine how information professionals, medical providers and patients themselves can work together in navigating the myriad possibilities and experiences central to this diagnostic period.