Health information retrieved from the Internet also can create stress for the searcher. One of the respondents asked a friend to do an Internet search to locate information for her about a chronic condition. The search produced results that “scared me even more. … There was too much information that was conflicting and ranged from minor to very major … so that didn’t help. It actually almost made it worse.”
Self-reliance
The women in this study were remarkably self-reliant when it came to searching for information about their own health or on behalf of others. Indeed, several made specific reference to their desire to take responsibility for their own health. One woman explained that although she trusts her doctor, “you have to go out there yourself and find other things.” In fact, to manage a chronic pain problem for which she’d received little relief from the formal health system, this woman took matters in her own hands. She found a pain management clinic through the newspaper, learned and continues to practice self-massage, participates in a special exercise program, and uses the computer at a friend’s house to order health food products.
Another woman told the interviewer that, with respect to her general approach to health:
I feel independent enough that I can work through it [illnesses and other health problems]. I can change the foods I eat and notice what gives me different effects then I can change on my own. I don’t need someone to tell me.
After a series of frustrating health events and unsatisfactory medical interventions, a participant concluded, “There’s only one person responsible for my health and it’s me … I was looking for everyone else to fix me and I needed to fix me.”
Similarly, another commented, “Nobody knows your body better than your own self, and it’s your responsibility to do the research.”
The Importance of Relationship in the Information Exchange
Consistent with findings reported in other studies, 90 percent of the women said they had or would rely on friends and family members for advice and information about their health, and all of them said they have or would rely on physicians to provide them with health information. However, several expressed ambivalence about managing their relationship with their physicians in view of information they retrieve through their own efforts. In another study of women’s health information-seeking, the authors observed that “when women experienced symptoms, assessed the need for consultation, and engaged in health-seeking behavior from the professional sector and tried to transfer their knowledge from the popular sector to the encounter, the reaction is often less than empowering.”24 In the present study several women made similar observations, for example:
[T]he best source of information is an informal system that’s around you of colleagues, friends, family resources. I feel put off by the formal system because it’s not user friendly, it tends to be bureaucratic and you have to work with it to get what you want.
I found [my doctor] not helpful, unfortunately. It makes it hard because there’s not a lot of other doctors. Like, it’s not just a matter of switching to another doctor. So, I’m hanging on to this doctor who I don’t respect for the medical information she’s given me so far.
As noted earlier, the expression of care in any helping relationship is expected and required by most information seekers, regardless of who provides assistance. In this study, nearly 70 percent of the participants commented on the quality of their relationships with service providers when describing their experiences in trying to locate health information. For example, a woman described her social worker as the best source of health information because:
[S]he can refer me, she has information, she’s a good facilitator. You can ask her for just about anything and she can direct you. If she doesn’t know she finds out and calls you later. She’s very, very good and she gives you the feeling that she’s got all the time in the world to spend with you and I know her caseload is big. She’s really the best.
Another said her acupuncturist/chiropractor had been most helpful to her because “he was concerned, caring, professional, and gentle.” A woman who commented on the significant informing role her local health food store plays in her life said, “They really look after you.”
Several women also talked about the importance of having access to information from others similar to themselves, especially women who had been through comparable experiences. For instance, a woman who had been diagnosed with breast cancer explained she wanted to connect with someone who had been through the experience because “I needed information to be prepared for what I had to face.”
What do Women Do with Health Information?
A page on the Canadian Health Network site (a consumer health information portal sponsored by the Public Health Agency of the Government of Canada) titled “How to Find the Most Trustworthy Health Information on the Internet” advises users of health Web sites to look for caution statements “that health information should not be taken as health advice or a substitute for visiting a health professional.”25 Similarly, the Health on the Net Foundation, a Swiss not-for-profit group, has developed an honor code for Internet health sites to protect users in search of health information. HONcode-accredited Web sites are to adhere to various principles, one of which states, “The information provided on this site is designed to support and not replace the relationship that exists between a patient/site visitor and his/her existing physician.”26 Although such statements are made, in part, to help those responsible for the sites to avoid potential liability, they also are consistent with public health policies that advocate personal empowerment through health information. In other words, they derive from the assumption that, by increasing knowledge of health and medical matters through consulting trustworthy sources of health information, members of the public will be able to participate more effectively in their own health decisions, although these resources are not intended to replace the expert role played by physicians and other health professionals.
The experiences reported by women in this study suggest that some of them use health information, including e-resources, as intended by policy makers–to reassure themselves, acquire knowledge about health conditions on behalf of themselves and others, and prepare for interactions with health professionals. Some also rely on e-resources to overcome the barriers of access to health care they face as a result of living in a rural area. For instance, one woman who wanted to know whether she was receiving appropriate care for a heart condition described how she’d searched the Internet for information about testing she had received: “I guess there was some level of skepticism living in a rural community. Is the health care system here as up to date? … I think I was just doing it [searching the Internet] to reassure myself.”
Others used health information for purposes that appear to go well beyond what is intended by designers of public e-health policies with respect to personal empowerment. Whether they consulted the Internet, libraries, personal collections of medical dictionaries and home remedy books, or suppliers of complementary or alternative medicine, several of the women interviewed were prepared to rely on these sources, rather than the advice of professional health experts, to make significant decisions about their own health needs and on behalf of others. For example, in the following passage, a woman described what she did after being told by a psychologist that she was suffering from post-traumatic stress:
Um, I got a book on post-trauma. Um, um, I also talked to a lot of people at the shelter who had seen people with the same symptoms. Talked to people who are going through it too and what they find helpful for them. Like a lot of people are using chamomile tea. A lot of people use B vitamins. Um, and that was the other thing I heard on the radio–that people with depression or, you know, because post-trauma can often get you into that area too, and B vitamins and C together, um, tend to help to get you out of that. And then I looked up which foods had lots of serotonin in them and which was, you know, what I should be consuming to help boost it naturally.
Another woman explained that not only does she use information she finds on the Internet to self-diagnose, but she makes treatment decisions and orders substances through the Internet to treat herself:
If it was a shoulder injury or something or if it was a pain in the toe I’d look it up on the computer and see if it really was gout or something, and then go to the doctor.
Interviewer: “So, you’d be looking for what … the diagnosis or … ?”
Yes … or a description. … I have some powder from a fella I was talking to on the Internet to see if that just might give me a little bit better health. … and, I looked up (a health condition) on the computer and took a look at it and, um, there’s no way that I’m going to go through that operation.
Many women reported that they look for information and advice from sources outside the formal medical system, such as health food stores and a wide range of alternative service providers, including chiropractors, massage therapists, naturopaths, homeopaths, social workers, acupuncturists, nutritionists, and even vibrational therapists. One explained:
I was worried about my thyroid glands and [a co-worker] went on the Internet and printed off a bunch of stuff for me and told me what signs to look for and what things can help alleviate certain things that go along with it, like go to the chiropractor and yoga and stuff like that, so it was pretty neat.
A woman who struggles with chronic back pain explained that she relies on alternative health care providers to help her interpret treatment information she locates on the Internet. She does so because she believes that “[P]hysicians are trained to deal with symptoms and disease, whereas the alternative world deals with preventing those from happening.” Another woman told the interviewer that she no longer relies on doctors. Instead, she regularly “experiments” on herself. For instance, she changed her diet in order to treat yeast infections and a sinus condition. Another said:
I basically took my health in my own hands. I’m not saying that it’s the right thing to do but … I really haven’t got much help from my doctor. … I went and asked them (at the health food store), even though I’m taking my thyroid medication I still feel tired so they said to take an iron supplement. … I like to get a different perspective on everything, not just what the doctor says because they don’t have an open mind.
One woman was so offended by her doctor’s suggestion that her chronic pain was the result of emotional problems that she has since been experimenting on her own with different treatment methods, including yoga and energy kinesiology. She also stopped eating meat and now plans to remove dairy products from her diet.
In a particularly poignant description of her search for health-related support, another woman described the importance of information she received from a “lady in the health food store,” not only in terms of managing her health condition, but to validate her health concerns:
I couldn’t seem to explain to him [her husband] what I was going through and what I was experiencing and he thought I was faking it and my children thought I was faking it and many friends thought I was faking it. But he went with me [to the health food store] and the woman explained everything about [the disease], well maybe not everything, but she covered a large field. We were in the store a good hour, just talking about it, and my husband came out of there saying, “I didn’t realize. I learned a lot today.”
Discussion
General principles of information-seeking provide useful ways to understand the health-related experiences of the women in this study. As usual in such investigations, understanding situational context is essential. For these respondents, rurality was a significant factor influencing their health information-seeking strategies and the use they made of the information they found. Not only are these women affected by the distance they need to travel to access healthcare services, but their decisions are influenced by concerns over lack of confidentiality as well as scarcity and quality of locally available healthcare services. Another significant contextual variable is the urgency of the situation that gives rise to a need for health information. For many of the women in this study, immediately pressing health concerns lead them to seek out primary health care sources, such as hospital emergency departments, for help and information. A few, however, are either particularly stoic or have such confidence in the resources to which they have immediate access, such as home remedy books, that they are prepared to rely on them even in urgent situations. When managing chronic or nagging health issues, many women are disinclined to rely on the formal health care system, and turn instead for advice and information from the Internet, libraries, or reference materials they have at home.
The principle of least effort (or ease of accessibility) also was evident. Many women turn to sources that are close-at-hand, such as home remedy books or medical dictionaries as well as friends and family members, for information about health-related issues. Consistent with what has been reported in other studies of women’s healthcare practices, they also rely on their informal social networks to stay up to date–to gather information on a serendipitous basis.27 Significant sources of health information in these local networks also included pharmacies, health food stores, and even veterinarians.