Abstract
OBJECTIVE To examine how women gather, evaluate, and use information on complementary and alternative medicine (CAM) options for managing menopausal symptoms.
DESIGN Qualitative study.
SETTING Calgary, Alta.
PARTICIPANTS Twenty-two women with a mean age of 52 years (range 42 to 58 years) who sought information on CAM therapies to manage menopausal symptoms.
METHOD In-depth semistructured interviews. Category coding and thematic analysis were used to interpret the data.
MAIN FINDINGS Four major themes emerged: how women gathered information, how they evaluated the information, how they used the information, and the challenges they experienced in making informed decisions. Information gathering was an on going process; as women’s symptoms changed, their information needs changed also. Their preferred sources of information included physicians, CAM practitioners, staff at health food stores, and personal contacts. They sought information about the process of menopause and about both CAM and conventional treatments. Study participants were highly educated. Most of them systematically evaluated information from many sources using such criteria as whether information was biased, where the information came from, and whether the information was current. Information was used to validate their symptoms and to choose treatment based on cost-benefit analysis, risk-benefit analysis, and possible negative side effects or interactions between medications. Finding reliable information was considered a challenge due to structural or information-related barriers. Several of the women cited a lack of time as a challenge: time to search for and evaluate information and the pressure of time to find relief from the symptoms of menopause.
CONCLUSION There is a need for reliable information about menopause and the risks and benefits of CAM options for menopausal symptoms in a format accessible to the range of women who will experience or are experiencing this transition. As a trusted source, family physicians have a role in disseminating this information.
Hormone therapy (HT) has been the treatment of choice for dealing with mild-to-severe menopausal symptoms and for mediating bone density loss and the increased risk of heart disease associated with changes in hormone levels.1 Results of research on HT remain contradictory, however. Potential benefits are outweighed by the health risks associated with use of hormones.2–5 The premature termination in 2001 of a large clinical trial because of increased risk of breast cancer and cardiovascular conditions in the women receiving HT further fuelled discussions on the safety and effectiveness of HT.4
Given the inconclusiveness of existing knowledge about HT,6 complementary and alternative medicine (CAM) for treating various health problems and for improving quality of life has experienced a resurgence.7 Complementary and alternative medicine modalities for managing menopausal symptoms range from lifestyle management to dietary supplements, estrogen like botanical products, and acupuncture. Women often perceive these treatments as more natural and more congruent with their personal preferences and values.8–10 Choosing nonprescription treatments also allows women to take a more active role in decision making.
Women need reliable and consistent information on the risks and benefits of CAM options to make informed choices. Despite the fact that women obtain information from various sources, including their physicians, many do not consider themselves adequately informed. They indicate that they need more high-quality information.6,11 This study is part of a larger research program that aims to improve information on CAM for a range of health issues. Information is essential for making appropriate decisions, but it is not always accessible. By studying information needs in a variety of populations, we can understand how women seek and use information and can use this understanding to help develop theoretical frameworks for decision making that will help us provide the information patients need.
The first phase of this study explores how women currently find information on CAM options, how they assess the information, and how they use it to make decisions on treatment. This phase investigates the range of types and sources of information women use, how the information affects their perception of risk and the decision-making process, and what their information needs are. Data from this investigation will help in development of a questionnaire to be administered in phase 2 that will verify the findings of the current study and assess their generalizability to a larger population of menopausal women.
METHODS
Given the limited amount of information available about CAM therapies for menopausal symptoms and the exploratory nature of the study, we took a qualitative approach.12 The research protocol was approved by the University of Calgary’s Conjoint Health Research Ethics Board.
Study participants
Women in midlife who might have experienced menopause-related symptoms and who sought information on CAM to manage those symptoms were recruited through notices posted in women’s health clinics, family physicians’ offices, CAM practitioners’ offices, community centres, and counseling centres. Interested women contacted the study coordinator who verified the inclusion criteria (appropriate age range and having looked for information on CAM to manage menopausal symptoms). A brief questionnaire asking for sociodemographic information, whether they were experiencing menopausal symptoms, and whether they had used CAM for menopausal symptoms was administered. This information was used to select a purposive sample that would represent diverse sociodemographic variables13 and to determine respondents’ stages of menopause and interest in CAM. Sample size was determined by the saturation principle; data were collected until new data yielded only redundant information.12,14
Data collection
Data were collected during in-depth semistructured interviews using an interview guide. The focus was on 3 areas: the type of information on CAM options women dealing with menopausal symptoms seek, the way women assess the trustworthiness of information, and the type and quality of information women want and need to make informed treatment choices. Women were also asked what symptoms they had experienced or were experiencing. The interviews were audiotaped and transcribed verbatim.
Data analysis
A qualitative approach was used to analyze the data.12 Interview transcripts for each participant were carefully read and coded for themes. Themes common among participants were identified and described. In keeping with qualitative research methods,12 data collection and analysis occurred simultaneously. NVivo version 2.0 software was used for data analysis. Several steps were taken to establish the trustworthiness of the data.15 Data were coded using analytic triangulation by 1 researcher; 2 additional investigators conducted careful audits to confirm the consistency of coding and the validity of themes. Differing perceptions of emerging themes were resolved by consensus. An audit trail was created to facilitate reproducibility and verification of findings. The research assistant documented each step taken in the data collection and analysis process and recorded emerging issues in data analysis. An integral aspect of qualitative research is reflection. The researchers adopted a self-critical attitude toward how their observations and interpretations might be biased by preconception. This also included awareness that their presence in the field might have distorted their findings.
FINDINGS
Twenty-two women were interviewed. Their mean age was 52 years (range 42 to 58 years). Fourteen were white, and 8 were from other backgrounds. Despite our efforts to include women from various socioeconomic levels, most participants were well educated (all the women had completed high school, 12 had graduated from college or university, and 4 had had postgraduate education). Most women had experienced symptoms, most commonly hot flashes or night sweats, irregular periods, irritability, and forgetfulness. Consistent with the inclusion criteria, women reported looking for information on CAM, and most women were interested in using CAM to help alleviate menopausal symptoms. Four major themes emerged during data analysis: how the women gathered information, how they evaluated the information, how they used the information, and the challenges they experienced in making informed decisions.
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.”
DISCUSSION
Previous literature has reported that the sources most frequently used by women seeking health information were the Internet,17,18 health centres and clinics,19 family physicians,11,20 and publications, such as books and magazines.11 This was also the case with the women participating in this study.
As a result of the controversy over HT, the number of sources promoting or advertising CAM options for treating menopausal symptoms has escalated.21 There is concern about the quality and reliability of health information on the Internet and in other lay publications, as well as about the ability of average consumers to select high-quality information relevant to them.17 The women interviewed in this study used a sophisticated approach to evaluate information on CAM options. They described information gathering and evaluation as an ongoing process, with scientific information complemented by the personal experiences of family members, friends, and colleagues. While previous studies have reported the use of various sources for information on CAM and menopause,19 none has described the highly developed and complex evaluation process of the women in this study. Information was assessed for both content and source using objective criteria. Evidence of information bias and product advertising and lack of disclosure of information sources were less valued, while current information and information from trusted sources (eg, government or public institutions) were more valued.
Having access to reliable and credible information was deemed necessary by participants to validate their experiences with menopause-related symptoms and to make informed decisions about the various CAM options. While information on cost, dosage, risk and benefit, side effects, and interactions was considered essential, women also indicated a strong need to better understand the “normal” process of menopause. For example, many of the women were unsure whether the symptoms they experienced were related to menopause or another health issue. Having their experiences validated was important to these women and greatly reduced their anxiety. Our finding of the need for consistent information on the process of menopause and its stages and symptoms confirms the findings of several earlier studies.11,22,23
As in other studies,20 family physicians were a highly valued and credible source of information for many women. This is consistent with results of a recent national survey where 44% of women agreed it was important to talk with a medical doctor before using natural health products.24 Many women in this study voiced concerns that their family physicians would be either unable or unwilling to provide them with unbiased information on CAM. If women think their providers are not open to CAM or are poorly positioned to advise them on safe and effective CAM options for menopausal symptoms,25,26 they might be less likely to discuss the topic during visits, thus missing an information source highly relevant to their decision making. It is perhaps more important that not discussing things with their physicians might put them at risk of herb-herb or herb-drug interactions.
While the women in this study were educated and most were well versed in researching and evaluating information, they sometimes faced challenges when researching CAM. Several participants suggested the need for a central source of information on all things menopausal, a place (either physical or electronic) or publication that provided information, both empirical studies and anecdotal material, about menopause and the many options available to women for alleviating symptoms.
Limitations
The highly educated status of these women is the study’s main limitation. Because of this, the findings might not be applicable to less educated women. In collaboration with physicians and health educators, however, our findings can assist in developing information and guidelines to inform women less likely or able to conduct thorough searches. Future research should include assessing the information needs of more socioeconomically diverse populations. Quantitative data gathered in phase 2, combined with these qualitative findings, will be used to develop materials appropriate for a range of menopausal women. The findings of this study might also inform the larger study in such matters as the need to ensure a diverse group of participants in order to capture the needs of all CAM users.
Conclusion
Despite our efforts to recruit women from a range of socioeconomic backgrounds, our participants were primarily well educated. While this is a limitation of our study, the sample represents typical CAM consumers as described elsewhere.7,24,27 Health Canada24 recently conducted a survey on the use of CAM. While the report does not comment on use of CAM for menopause specifically, it found that 78% of women surveyed used CAM and that 40% were interested in obtaining additional information about CAM. Our study shows there is a need for reliable information about menopause and the risks and benefits of CAM treatments for menopausal symptoms. Women interested in CAM options should be provided with information to support their decision making. As evidenced by participants’ preference for sources they can trust, health centres, clinics, and family physicians all have a role in disseminating this information.
Acknowledgment
This project was funded by the Alberta Heritage Foundation for Medical Research.
Notes
POINTS DE REPÈRE DU RÉDACTEUR
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Le manque actuel de données probantes sur l’hormonothérapie a entraîné un regain de popularité à l’égard des médecines complémentaires et alternatives (MCA) comme traitement de divers problèmes de santé et pour améliorer la qualité de vie.
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Même si elles obtiennent l’information de plusieurs sources, incluant leur médecin, les femmes ne se considèrent pas suffisamment informées sur les options de traitement pour les symptômes de la ménopause et elles signalent qu’elles ont besoin d’une information de meilleure qualité.
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Quatre thèmes principaux sont ressortis de l’analyse: comment les femmes recueillent l’information, comment elles l’évaluent, comment elles l’utilisent et les dif_cultés qu’elles éprouvent dans la prise de décision.
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Plusieurs des participantes se sont dites préoccupées du fait que leur médecin de famille était incapable ou refusait de leur fournir des renseignements impartiaux sur les MCA.
EDITOR’S KEY POINTS
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Given the inconclusiveness of existing knowledge about hormone therapy, complementary and alternative medicine (CAM) for treating various health problems and for improving quality of life has experienced a resurgence.
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Despite the fact that women obtain information from various sources, including their physicians, many do not consider themselves to be adequately informed about treatment options for menopausal symptoms and indicate a need for more high-quality information.
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Four major themes emerged from the analysis: how women gathered information, how they evaluated the information, how they used the information, and the challenges they experienced in making informed decisions.
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Many of the women in this study voiced concerns that their family physicians would be either unable or unwilling to provide them with unbiased information on CAM.
Footnotes
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This article has been peer reviewed.
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Contributors
Dr Suter, co–principal investigator, was responsible for designing the study and writing the proposal. She also contributed to data collection, analysis, and interpretation, and preparation of the manuscript. Dr Verhoef, co–principal investigator, played a major role in designing the study and writing the proposal. She also participated in data collection, analysis, and interpretation, and in manuscript review. Dr Bockmuehl assisted in addressing the study proposal’s relevance to family practice and in providing clinical background for design of the questionnaire. He also helped recruit subjects and reviewed the manuscript. Ms Forest, project coordinator, was responsible for recruitment of subjects, data collection and analysis, and manuscript review. Ms Bobey provided feedback on information currently being given to women and the kind of information women were seeking in the area of complementary and alternative therapies. She was also involved in recruiting subjects, in discussing the feasibility of implementing study findings in clinical settings, and in manuscript review. Ms Armitage assisted with data analysis and cowrote the article.
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Competing interests
None declared
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