Inquiring minds

Information gathering

The women sought general information on the process of menopause, including stages and symptoms; medication options to deal with symptoms; safety, effectiveness, dosage, and cost of medications; as well as possible side effects or interactions between drugs and herbs. Information gathering was an ongoing process; as women’s symptoms changed, their information needs changed also.

The women accessed a variety of sources including physicians, CAM practitioners, staff at health food stores, and personal contacts. Other popular resources were books, especially those written by women; Internet sites; and workshops at the Women’s Health Centre.

Evaluating information

Women valued balanced information that gave the benefits and drawbacks of particular products, evaluated several different brands of the same medication (similar to consumer report comparisons), and compared CAM and HT. As one woman said, “It’s nice when you’re getting information if you could get it from a source where you get the whole picture.” Information that seemed unreasonable was likely to be disregarded in favour of advice that presented a more common-sense, practical position. Product claims supported by evidence-based studies were assigned more weight. Also, since new information is continually being reported by the medical community, women preferred current information. When the women were evaluating such sources as websites or books, they considered additional criteria: “I look at their bibliography and the resources where they got their sources for their information.” Information on websites that primarily focused on product promotion was viewed as unreliable. Magazines were examined for advertisements of products mentioned in articles.

The women also evaluated information by source. While some women tended to rely on faith, intuition, or gut feeling, most used systematic analysis to judge the validity of information. Medical sources, such as physicians and pharmacists, were cited by several women. These women relied on their physicians’ advice and approval. One said, “I value what she had to say, but she would only tell me what was validated in the more traditional kinds of scientific sources. So, in other words, what she learned, what she accessed through probably her normal channels as a family physician.” Another said, “When you are asking your own GP questions, those are to be trusted because … of her medical knowledge … and experience.” On the other hand, some women were critical of physicians if the information they provided was not current. Some women also believed conventional medical practitioners were less willing to consider CAM as a viable alternative to HT. One said, “Some physicians are more open-minded, but some are just definitely medical model, not willing to look at alternatives or best alternatives, so I mean when you go there, that’s the perspective you’re gonna get.”

Government sources were also considered trustworthy with one participant noting that all levels of government have a vested interest in keeping the population healthy. Canadian sources or content suggested that the medication had been assessed by Canadian standards, which gave the women more confidence in it.

Some women trusted the staff of health food stores to be knowledgeable, presuming that long-term, established businesses are trustworthy sources. This was also the case for manufacturers of herbal products, the assumption being that well-known companies are reputable and research-based. One of the women was concerned that CAM therapies had been taken over by drug companies, however. Confidence in health food stores was not shared by everyone.

Many of the women valued first-hand accounts from family, friends, colleagues, and other workshop participants. One respondent said, “I would say conversations with other women had a pretty significant impact, too, as part of weighing it, you know, the information that I was reading and getting from other sources.”

When participants were asked to comment on how they evaluated conflicting information, a surprising number said they did not encounter any. Others ignored the information if they considered the contradictions minor. The women usually continued researching many sources until they were satisfied that the information was trustworthy and they had all the information they needed to make informed decisions. One woman said, “I still like to just double-check things, and triple-check things and quadruple-check things.” Another said, “Well, it was a challenge to get the information and make proper choices and, you know, confirm the information that I was getting from different sources and talking to my doctor about it and then deciding for myself what to do.” One fairly consistent message was the need to be critical of information on health products, either HT or CAM. As one woman stated, “I can’t leave it in someone else’s hands, for I think I have to take responsibility for my own health as much as possible.”

Use of information

The information women found was used to assist them in 2 main areas. First, it was used to validate symptoms. Women can experience a variety of symptoms they might not immediately associate with menopause, such as general anxiety, restlessness, muscle tension, difficulty concentrating,16 and difficulty with word retrieval. Some women felt validated and relieved after they located a source of information that listed their symptoms as typical of menopause rather than indicative of some illness. Once women were reassured that the symptoms were normal, they stopped worrying about them. One woman said, “What are the symptoms? What’s happening to me. ... Should I be looking at other underlying medical problems, or is this, in fact, something I can just hang on menopause?”

Second, the information helped women with decision making regarding the various options available to them for dealing with symptoms. These options included taking no action, obtaining prescription HT medications, seeking CAM remedies (including lifestyle modifications), and a combination of options. Some women undertook a cost-benefit analysis. Other women assessed the risks and benefits of treatment, especially when considering the possible side effects of drugs, particularly with regard to HT. Assignment of a drug identification number by Health Canada to a CAM product signaled a good-quality herbal product, which the women thought lowered risk. Dosage, frequency of use, and size of pills could also affect women’s choices of products.

I just sort of put it all together, decide what’s best for me … weighing the effectiveness versus the cost, how bad is the symptom ... is it something I can easily incorporate into my budget and lifestyle? … It’s a combination of things that, when you look at the whole big picture, says, yeah, this is right, this is something I will do or this is something I won’t do.

Challenges in informed decision making

Only 3 women indicated they experienced no challenges in making informed decisions. For the others, there were numerous challenges to overcome. The challenge most often mentioned was finding time to do the searches, to evaluate the information, and to find relief for their symptoms. Women who resided in smaller communities found access to information challenging; they often relied on the Internet. Even that could be difficult if the computer was shared with other family members. One woman was not knowledgeable about computers and searching websites and believed this put her at a disadvantage.

Barriers to gathering information can be grouped into 2 major categories: unbalanced or biased information and quantity of information. The first included physicians’ bias against CAM and unwillingness to advise their patients about herbal alternatives, and health food store employees’ or holistic practitioners’ unwillingness or inability to describe the benefits and disadvantages of CAM. One woman said, “I would like doctors who are more open to discussing alternative methods. I think most women would want that now.” Quantity of information was also a challenge. One woman said, “The biggest challenge is that there’s so much information out there, so many products, so many choices.”