“If My Mother Was Alive I’d Probably Have Called Her”: Women’s Search for Health Information in Rural Canada

At the level of formal systems, two factors that facilitate information seeking are: (1) a common understanding between an information-seeker and service provider about the problem situation and the type of information being sought; and (2) a willingness on the part of the helper to behave toward the help-seeker in a manner that communicates concern, respect, and support.²⁸ In this study, the presence or absence of these facilitating mechanisms was often at the root of the situations described to the interviewer. For instance, many women talked about their need to be heard and respected when they look for information about their own health or on behalf of others. If they perceived such support and care to be absent–for example, in their relationship with a physician–they sought assistance elsewhere. Indeed, because they’d lost confidence in the formal health system, several women were prepared to diagnose and treat themselves. These women’s self-reliance and self-agency through the use of various alternative sources of information and experimentation is consistent with Wuest’s observations about women’s use of informal sources of health information, including home remedies.²⁹ It also supports observations about how women living in remote northern areas develop what Leipert and Reutter call “resilience” in order to maintain their health.³⁰

Although many are very independent information-seekers, most women in this study rely heavily on the personal connections they form with others who are willing to spend time discussing their concerns. This was evident throughout most of the stories shared by the respondents. In fact, many women seemed to link satisfaction with their health outcomes (or those of their family members), at least to some degree, with the relationships through which they found, expressed, and discussed health information. Although all had had experiences with physicians, many of them positive, a number of women reported that they had found greater support for their health needs from others. The actual roles of these others, whether they were friends, family members, pharmacists, nurses, librarians, staff members in health food stores, or massage therapists, seemed in many ways incidental. Rather, their perceived helpfulness appeared to depend largely on the expression of caring during the information exchange. In other words, the degree to which the helper or information provider showed evidence of care, whether by listening, taking time, or showing some form of kindness, was central to whether the exchange of information was considered to be a success.

As attempts are made to find solutions to meeting the healthcare needs of people who live in rural areas, it is important to recognize the realities experienced by women who live in these communities. It was clear in the present study that women do a great deal of gate-keeping for themselves and for their families with respect to health care and service use. They actively seek and assess information from a wide variety of sources, including the Internet, and they balance what they learn against their experiences with the formal health system. Their experiences support Nettleton and Burrows’ observation that “medical knowledge is no longer exclusive to the medical school and the medical text; it has escaped into the networks of contemporary infoscapes where it can be accessed, assessed, and reappropriated.”³¹

What about Libraries?

When the women in this study looked for health information outside their personal social networks, many relied on inefficient strategies, especially when using the Internet. As health issues arise, they generally use a hunt-and-peck search method consisting largely of plugging keywords into popular search engines. Few bookmarked preferred Web sites or returned to known sites when searching. And, despite the enormous public investment in e-tools for health information, such as government-supported Web portals, most of the women were not aware of them or didn’t use them. Similar observations have been reported elsewhere. For example, in a study conducted in the United Kingdom of women who used the Internet to locate health information, most employed “unsystematic” search strategies and had little awareness of “who or what organization was publishing the information being accessed.”³² Even in a sample of well-educated women in the United States who regularly visit public libraries, most showed little awareness of specific health and medical information resources and relied on general search engines for health-related inquiries.³³ Given the frequency with which women in the present study mentioned feeling overwhelmed by the volume of health-related material on the Internet, and given their concerns about how to interpret what they found, it seems unlikely that Internet-based e-health initiatives alone will overcome the barriers of access to health care facing people living in rural communities.

Writ large, one might describe the various intermediaries to whom women turn for health information as providers of reference services. When it comes to supporting the health information needs of the women in this study, it seems obvious that the reference support potentially available to them in the public library system is an underexploited (and perhaps underdeveloped) resource. Although several women recognized the value of having libraries available as a local resource for health information, they had concerns about whether health-related materials available in local libraries are up-to-date and, other than access to the Internet provided in the libraries, they were unaware of the electronic resources available through the local public library system. Nevertheless, the women’s willingness to use the Internet and libraries for information about nagging or chronic health issues suggests that it may be in this domain (rather than, for example, for help with acute health concerns) that Internet-based e-health services and public library-based health information services have the greatest potential for increasing health support capacity in rural areas.

As noted throughout this article, studies of help-seeking in a variety of contexts have shown repeatedly that the quality of the connection between helper and help-seeker is essential to the satisfaction of the person in need of assistance. In health care, too, a recent study of the needs of women with primary breast cancer suggests that while women’s dominant concern is to trust their doctor’s expertise, they also want a relationship with the doctor and a person-to-person connection in which they are treated with respect.³⁴ Across the health sector, the importance of relationship is being increasingly recognized. In fact, a recently published editorial in the British Medical Journal calls for “the return of the human” in a theme issue on the topic of what’s next in electronic communication and health care.³⁵

Although there are legitimate concerns about confidentiality when it comes to small public libraries as service hubs for sensitive health information, it does seem that public libraries have a great opportunity to develop meaningful health reference services, especially in rural areas where other services may be limited, as libraries are extremely well-positioned to respond to the need for access to reliable health information provided in a caring context.

On a practical level, the results of the present study provide some guidance that can help frame appropriate reference service and health information programming in public or community libraries. First and foremost, women living in rural areas are active health information-seekers and will consult a variety of sources to get the answers they need. The participants in this study who were familiar with libraries were likely to use them and find them helpful. It seems reasonable then, that an important, overarching consideration for those designing and delivering health reference services should be the promotion of communitywide awareness of such services. Second, there is a growing body of evidence, including the findings of this study, indicating that women want and need not only health information per se, but to have it presented, and ideally discussed, in the context of a caring, interactive relationship–one that respects the woman as the expert when it comes to her own needs, concerns, and context. This holds true for interactions with healthcare providers and, we would argue, with librarians. Third, the women in the present study had a much broader conceptualization of “health” than might be expected. For many, “health” is incorporated in the concept of “well-being” or “quality of life,” thus many health information-seekers may want access to a variety of materials that would not traditionally be indexed as health topics. Some of the topic materials described by respondents in the present study included parenting, poverty, access to pension, employment insurance and other benefits, home heating, pollution, agricultural practices, credit counseling, social isolation, abusive relationships, time management, and dating. Any health reference service, therefore, should be interlinked with other subject areas that patrons may view as part of health and well-being, or, as one of the women in this study put it, “the emotional side of health.” Finally, the issue of health literacy, as well as information and technical literacy, must be addressed. Many women in the present study acknowledged that they were ill-equipped to search for information efficiently, or to evaluate its quality, applicability, and safety once retrieved. Health information programs and services should be designed not only to help patrons find high-quality information, but also teach them basic skills for searching, identifying high-quality sources, and knowing what types of information require follow-up action, such as consultation with a healthcare provider. Indeed, improvements in these types of literacies may be one of the more significant forms of enabling that libraries and librarians can offer patrons who have health-related concerns. For advice about how to create such services, the CAPHIS Web site offers many useful tips concerning how to set up and run a consumer health library.³⁶

Conclusion

It seems naïve, if not cynical, to assume that the healthcare needs of women who live in rural communities will be met by simply deepening the supply of Internet-based health information, particularly in jurisdictions where access to primary health care is limited by insufficient resources in the system, such as too few family physicians in Ontario, or where individuals do not have adequate health care coverage, as is the case for many uninsured or underinsured individuals in the United States. As nations struggle over how best to meet their citizens’ primary healthcare needs, tertiary support in the form of e-health information initiatives directed at the public is doable if attached to a context of care. One such obvious context is the local public library, where the expertise can (or should) exist to support effective information searches and to provide an empathic, listening ear when information is retrieved. This, we suggest, is a much more realistic response to improving public access to health care than e-government strategies that rely only on such Internet resources as health portals on the Web. In fact, bolstering local libraries to provide meaningful health reference programs may go some distance to relieve the pressure on women who are looking for health information for themselves and for family members and who will, as we have seen in this study, turn to unregulated sources and rely on potentially harmful tactics for treatment in the absence of available or caring support from the formal health system.

Acknowledgements: During the research project, Nadine Wathen was supported by a fellowship from the Canadian Institutes of Health Research–Ontario Women’s Health Council.

The authors are grateful for support received from the Action for Health project funded by the Social Sciences and Humanities Research Council of Canada under the Initiative on the New Economy: Collaborative Research Initiatives program. Special thanks to the women who took the time to share their experiences about their search for health information, and to Arlene Timmins for her skill and sensitivity in conducting the interviews.

Roma Harris is Professor, Faculty of Information and Media Studies, The University of Western Ontario, London. Nadine Wathen is Assistant Professor, Faculty of Information and Media Studies, The University of Western Ontario, London. A brief version of this paper was presented in October 2004 at the Second Conference on Literacy and Health in Ottawa. Submitted for review October 4, 2005; accepted for publication May 4, 2006.

References and Notes

1. Rebecca Sutherns, Marilou McPhedran, and Margaret Haworth-Brockman, Rural, Remote and Northern Women’s Health: Policy and Research Directions, Final Summary Report (Ottawa: Centres of Excellence for Women’s Health, 2004) (accessed Apr. 17, 2007).
2. Jo Wainer, “Rural Women’s Health,” Australian Journal of Primary Health 4, no. 3 (1998): 80.
3. Rural Assistance Center, Women’s Health (accessed Apr. 17, 2007).
4. Flis Henwood et al., “‘Ignorance Is Bliss Sometimes’: Constraints on the Emergence of the ‘Informed Patient’ in the Changing Landscapes of Health Information,” Sociology of Health & Illness 25, no. 6 (2003): 589-90.
5. The Canadian Health Network, The Public Health Agency of Canada: About Us, www.canadian-health-network.ca (accessed Apr. 17, 2007).
6. Clarann Weinert and Wade G. Hill, “Rural Women with Chronic Illness: Computer Use and Skill Acquisition,” Women’s Health Issues 15, no. 5 (2005): 230-36; Wade Hill, Clarann Weinert, and Shirley Cudney, “Influence of a Computer Intervention on the Psychological Status of Chronically Ill Rural Women: Preliminary Results,” Nursing Research 55, no. 1 (2006): 34-42.
7. Mollyann Brodie et al., “Health Information, the Internet, and the Digital Divide,” Health Affairs 19, no. 6 (2000): 255-65.
8. Lynn M. Meadows, Wilfreda E. Thurston, and Carol A. Berenson, “Health Promotion and Preventive Measures: Interpreting Messages at Midlife,” Qualitative Health Research 11, no. 4 (2001): 461.
9. Dorothy Warner and J. Drew Procaccino, “Toward Wellness: Women Seeking Health Information,” Journal of the American Society for Information Science and Technology 55, no. 8 (2004): 709.
10. David H. Gustafson and Jeremy C. Wyatt, “Evaluation of Ehealth Systems and Services. We Need to Move Beyond Hits and Testimonials,” British Medical Journal 328 (May 15, 2004): 1150.
11. Sarah Nettleton and Roger Burrows, “E-scaped medicine? Information, Reflexivity, and Health,” Critical Social Policy 23, no. 2 (2003): 171.
12. See, for example, Lynda M. Baker and Virginia Manbeck, Consumer Health Information for Public Librarians (Lanham, Md: Scarecrow, 2002).
13. Roger Guard et al., “Health Care, Information Needs and Outreach: Reaching Ohio’s Rural Citizens,” Bulletin of the Medical Library Association 88, no. 4 (2000): 374-81.
14. Fred B. Wood et al., “Public Library Consumer Health Evaluation Project: Results of a National Library of Medicine Evaluation,” Bulletin of the Medical Library Association 88, no. 4 (2000): 314-22.
15. Roma Harris, C. Nadine Wathen, and Donna Chan, “Public Library Responses to a Consumer Health Inquiry in a Public Health Crisis. The SARS Experience in Ontario,” Reference & User Services Quarterly 45, no. 2 (2005): 147-54.
16. Roma Harris and Patricia Dewdney, Barriers to Information: How Formal Help Systems Fail Battered Women (Westport, Conn.: Greenwood, 1994).
17. Reijo Savolainen, “Everyday Life Information Seeking: Approaching Information Seeking in the Context of ‘Way of Life,’” Library & Information Science Research 17, no. 3 (1995): 259-94.
18. See for example, Kirsty Williamson, “Discovered by Chance: The Role of Incidental Information Acquisition in an Ecological Model of Information Use,” Library & Information Science Research 20, no. 1 (1998): 23-40; Karen E. Pettigrew, “Waiting for Chiropody: Contextual Results from an Ethnographic Study of the Information Behavior among Attendees at Community Clinics,” Information Processing & Management 35, no. 6 (1999): 801-17.
19. Caroline Haythornwaite, “Social Network Analysis: An Approach and Technique for the Study of Information Exchange,” Library & Information Science Research 18, no. 4 (1996): 323-42.
20. Williamson, “Discovered by Chance,” 37.
21. The region in which these women live is known for its fierce snowstorms and blizzard-like conditions that frequently force road closures during the winter, sometime for extended periods.
22. See, for example, Warner and Procaccino, “Toward Wellness.”
23. Health Ontario.com, www.healthontario.com (accessed Apr. 17, 2007).
24. Lynn M. Meadows, Wilfred E. Thurston, and Carol A. Berenson, “Health Promotion and Preventive Measures: Interpreting Messages at Midlife,” Qualitative Health Research 11, no. 4 (2001): 450-63.
25. Canadian Health Network, “How to Find the Most Trustworthy Health Information on the Internet” (accessed Apr. 17, 2007).
26. HONcode: Principles (accessed Apr. 17, 2007).
27. See, for example, Helen M. Keleher and Glenda K. Verrinder, “Health Diaries in a Rural Australian Study,” Qualitative Health Research 13, no. 3 (2003): 435-43; Beverly D. Leipert and Linda Reutter, “Developing Resilience: How Women Maintain Their Health in Northern Geographically Isolated Settings,” Qualitative Health Research 15, no. 1 (2005): 49-65.
28. Harris and Dewdney, Barriers to Information.
29. Judith Wuest, “Negotiating with Helping Systems: An Example of Grounded Theory Evolving through Emergent Fit,” Qualitative Health Research 10, no. 1 (2000): 51-70.
30. Leipert and Reutter, “Developing Resilience.”
31. Nettleton and Burrows, “E-scaped Medicine?” 179.
32. Henwood et al., “‘Ignorance Is Bliss Sometimes,’” 605.
33. Warner and Procaccino, “Toward Wellness.”
34. Emma Burkitt Wright, Christopher Holcombe, and Peter Salmon, “Doctors’ Communication of Trust, Care, and Respect in Breast Cancer: Qualitative Study,” British Medical Journal 328 (Apr. 10, 2004): 864.
35. Editorial, British Medical Journal 328 (May 15, 2004):1143-44.
36. CAPHIS: Consumer and Patient Health Information Section (accessed Apr. 17, 2007).

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