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ABSTRACT: Complementary and alternative medicine (CAM) is prevalent among women treated for breast cancer but poorly understood in some ethnic groups. This exploratory descriptive study characterized CAM use for treatment and general health among African and European American women with breast cancer. African American women reported higher CAM use and marked emphasis on faith among other differences from European American women. Implications for practice are discussed.
The use of complementary and alternative medicine (CAM) is increasing in the United States and worldwide. The National Center for Complementary and Alternative Medicine (NCCAM) identifies CAM as a group of diverse medical and healthcare systems, practices, and products that are not presently considered to be part of conventional medicine (NCCAM, 2013). The role of faith and Christianity as a form of CAM has not been fully examined in light of its potential to benefit patients, although religion and spiritual practices are known to impact health.
Traditional medicine, folk medicine, faith, and herbal medicine have been described as being used by persons from a variety of cultures in the United States, especially African Americans. Some authors have defined these therapies as CAM (Fletcher, 2000), and the patients studied used spirituality as a type of CAM. A sample representative of European Americans, African Americans, Latinos, and Asian groups showed that CAM use is prevalent in all of these groups, but the types of therapies used varies from group to group (Lee, 2005), perhaps based on cultural traditions.
Overall, nearly 90% of women diagnosed with invasive breast cancer will be living 5 years after diagnosis, but among African American women, 5-year survival is 77% (Howlader et al., 2011). Women with breast cancer are more likely to use CAM than other cancer patients (Alferi, Antoni, Ironson, Kilborn, & Carver, 2001), which may affect their rate of cure. A few studies with diverse samples of breast cancer patients suggest striking differences in the amount and types of CAM used in different ethnic groups. Fletcher (2000) described a rich tradition of the use of folk medicine within the African American community but did not identify its use in specific diseases.
Cushman, Wade, Factor-Litvak, Kronenberg, and Firester (1999) found that African American breast cancer patients use folk medicine practices learned from their grandmothers in the rural south such as herbs and roots for healing. Studies from rural North Carolina (NC) (Arcury et al., 2009) found high use of folk medicine such as a daily dose of turpentine. A qualitative study of African American women with advanced breast cancer (Mathews, Lannin, & Mitchell, 1994) showed that devoutness in the form of prayer and attendance of church services was an important aspect of the African American healing tradition. In that study, women blended the biomedical model of treatment with their concept of God as healer and protector, using folk remedies and faith as forms of CAM.
In studies of CAM use where samples of breast cancer patients have significant minority representation, authors have found high rates of CAM use in each ethnic group. Mackenzie, Taylor, Bloom, and Hufford (2003) found that African Americans, Latinos, Asians, and Native Americans used CAM in different combinations. Lee, Lin, Wrensch, Adler, and Eisenberg (2000) reported similar results in that about half of the women studied used CAM, but the types of CAM varied with their ethnic group.
Although traditional medicine, folk medicine, and religiousness have been documented heavily in the literature about the African American community (Woodard & Sowell, 2001), studies that include African American women's CAM use and decision-making in breast cancer are largely absent (Barton-Burke et al., 2006). This article reports a study of CAM therapy use in a sample of primarily low-income (below $25,000 per year) women receiving treatment for breast cancer in the southern United States. Special attention was given to recruitment of African American women as they often are resistant to participation in research (Rugkasa & Canvin, 2010). The investigation synthesized in-depth individual interviews and quantitative data from questionnaires to provide a rich description of women who decided to use CAM while experiencing treatment for breast cancer. This study expanded the usual definitions of CAM to include faith, an important aspect of health and decision-making in the women studied.
This descriptive study used a cross-sectional design and three methodological approaches: a card sort, individual interviews, and selected quantitative instruments. Participants were a convenience sample of 19 women who had received or were currently receiving treatment for breast cancer. Because the study was exploratory, all European American and African American volunteers were included to provide a broader look at the study questions. The women in the sample self-identified as European American (n = 10) or African American (n = 9). They were interviewed from December 2005 until May 2006. Inclusion criteria were CAM use, age 18 and older, with Stage II-IV breast cancer, and able to speak and read English.
Data collection took place in three different communities in Piedmont, NC, at locations chosen by the participants, including an oncology clinic, a wig and prosthesis shop, a public library, a school of nursing, and private homes. These sites also became sites for recruitment. Duration of the interviews ranged from 45 minutes to 2 hours.
After consent was obtained, each participant received a set of 81 cards, each of which listed one CAM therapy, and five blank cards on which participants could list CAM therapies not included in the 81-card set. Therapies were generated from previous research with breast cancer patients (Lengacher, Bennett, Kip, Berarducci, & Cox, 2003), CAM used by the public, and ethnic samples, plus therapies used in traditional and folk medicines within African American and rural communities. The list was reviewed by an expert panel made up of a CAM provider; African American community members; a nurse researcher familiar with CAM use in breast cancer treatment; an oncology nurse; community contacts in Wake County, NC; an African American faculty member from a historically Black university; and an oncologist specializing in breast cancer treatment.
Participants were asked to sort the cards into five categories: 1) CAM they were currently using; 2) CAM they had used in the past; 3) CAM they had considered but never used; 4) CAM they had never used and did not plan to use; and 5) CAM they had never heard of was added as the study progressed. They also were asked to sort the cards for CAM they were currently using into therapies used to support general health versus for breast cancer and its treatment. Card sort methodology has been used successfully in past studies with breast cancer patients (Hack, Degner, & Dyck, 1994), applying the theory of preferential choice to mirror a part of the patient's decision to use CAM and stimulate discussion about how she made those decisions about CAM.
All participants were interviewed by the principal investigator. Using an interview guide for consistency, each participant was asked how she had decided which CAM therapies to use (or not use) and factors that influenced her decision-making about each therapy. Questions in the guide explored the words used to describe the complementary therapies; women's personal experiences with CAM; reasons for, barriers to, and facilitators of CAM use; and the relationship of CAM use to treatment of breast cancer-related problems. As more interviews took place, the interview guide was modified to clarify themes identified in previous interviews.
Each interview was audio taped and transcribed verbatim for analysis. Transcripts and notes from the interviewer were reviewed and analysis began after the first interview was complete and continued until thematic saturation was reached. A brief closed-ended questionnaire elicited demographic and clinical information.
Constant comparative analysis (Strauss & Corbin, 1990) was used to identify similarities and differences in the participant's accounts of CAM use. Quotations were selected to illustrate themes common to the women and the processes they used to decide about CAM use, self-care, and healthy lifestyles. The women's accounts were examined for examples of CAM selection and rejection and the logic the women used to come to these decisions and compared across participants and emerging themes were coded and compared among the women.
Participants' ages ranged from 35 to 67 years and included urban and rural dwellers, high school only and college graduates, and employed and unemployed women; half reported family incomes below $25,000 per year. Most reported religious affiliation to Protestant or Roman Catholic churches. The only statistically significant difference between participants was European American women were employed more than African American women. More detailed demographic and clinical characteristics of the participants can be found as supplemental digital content at http://links.lww.com/NCF-JCN/A26.
Length of time since breast cancer diagnoses ranged from 2 to 132 months (M = 32.9, SD = 34.2); 10 had been diagnosed within the past year. With the 132-month outlier removed, the range was 2 to 84 months (M = 27.4, SD = 25.1). The women had received a variety of treatments, including surgery (biopsy or mastectomy), radiation, hormonal, or chemo therapy. Only one had completed all therapy; she had been diagnosed the longest. Participants who were receiving chemotherapy were more likely to have been diagnosed less than a year and European American; those receiving hormonal therapy were likely to be diagnosed between 2 and 7 years and African American. Fewer than half the participants had a family history of breast cancer.
Table 1 summarizes the CAM therapies used by more than half of the study sample overall and by race. The average number of CAM therapies per participant was 18.31 (SD = 7.23, range 7-31). Overall, prayer was the most frequently used CAM therapy. Even the women who did not take part in organized religion prayed. In their accounts of prayer, they spoke with and sought God for support in prayer and meditation. Other commonly used CAM therapies were music, humor, and exercise. Therapies used by at least 80% of African American women were prayer, music, exercise and vitamin E; those used by at least 80% of European American women included prayer, music, humor, exercise, antioxidants, and traditional medicine. However, all the women in the interviews described traditional medicine as using conventional medical providers, their oncologists. They did not subscribe to the definition of traditional medicine delineated in CAM literature-a specific type of care that employs a holistic approach to health (Mathews et al., 1994).
Twenty-eight therapies were selected by fewer than half of the 19 participants. Marijuana (used by three participants) was the CAM least selected, followed by turpentine, hypnosis, and colored light treatments (each used by five participants). European American participants selected black cohosh, fasting, mushroom extract, hypnosis, and colored light treatments least often, while the African American participants selected art therapy, whiskey, gingko, hypnosis, and "rootwork" least often. Rootwork is the belief in the power of spells and potions prevalent in the rural south.
When asked to distinguish between two roles for currently used CAM therapies, participants distinguished between cancer-related and general health-related CAM use. Cancer-related CAM therapies were used to target specific side effects of treatment, including emotional and physical toxicities. Some also used CAM to counteract past poor health decisions and become healthier so they could tolerate treatment and lessen the likelihood that cancer would recur. Therapies considered elements of general healthy living included vitamins, exercise, and a healthy diet. Participants used a wider variety of CAM treatments for their health than for their breast cancer. All 81 types of CAM and frequency of use can be found as supplemental digital content at http://links.lww.com/NCF-JCN/A26.
The average number of therapies used per participant for breast cancer was 7.8 (SD = 5.6, range = 0-8), with prayer the most frequently used. Other commonly used cancer-related therapies included traditional medicine (oncologist, not holistic), special diets, antioxidants, exercise, meditation, special foods, support groups, and vitamin C. African American participants used more types of CAM and averaged more therapies per participant (M = 8.44, SD = 5.50) than did European American participants (M = 7.2, SD = 6.01). Although preferences for cancer-related CAM use overlapped across ethnic groups, there appeared to be some differences, as shown in Figure 1. African Americans used prayer, spiritual healing, meditation, special diet, and exercise most often for their cancer. European Americans used traditional medicine, support groups, humor, special diet, and antioxidants most often. One woman described spiritual healing as, "I'm learning more about God, but spiritual healing is again with my meditation ... it might be that my spiritual healing is just inside of me." Others described formal services of healing conducted in their faith communities.
The average number of CAM therapies used for health was 10.5 (SD = 6.0, range 0-21). The most frequently used were music, humor, exercise, and vitamins. CAM use for health appeared to differ by race: European American women reported using prayer, relaxation techniques, and exercise for health; African American women reported using humor, vitamin E, vitamin B6, and lemon for health. Both groups reported using music to stay healthy.
Participants reported beginning the use of CAM in reaction to receiving a cancer diagnosis, with the hope that using CAM would make them healthier and better able to tolerate treatment and prevent cancer recurrence. They described the cancer diagnosis as disrupting their equilibrium. One said, "I kind of lost myself, and I think all that's related to the cancer." Another said,
You get such a jolt in life when you're going along, and suddenly your life's turned upside down. You have cancer, and you say, how on earth did I get it? What am I going to do? And it just makes you-it's like a wake-up call.
Being healthy was equated with not having cancer. One woman commented,
I could kick myself now because who knows what causes it, you know. I could have just done it to myself, and so I'm trying to be respectful of my body now, and hopefully it's not too late.
Participants used CAM to maintain control over aspects of their cancer treatments. Several described using guided imagery to control where their treatment was active. A pregnant participant described her visualization strategy:
When I was getting my chemotherapy, I was picturing it ... where it was going, what it was going to do, how it would stay away from her [baby], and how it would attack cancer cells. It made me feel like I had some kind of control over what that poison was going to do.
Physical toxicities addressed with CAM included fatigue, pain, sleep difficulties, taste alterations, menopausal symptoms, nausea, mouth sores, and watery eyes. Participants used herbal tea, ginger, and pickle juice for chemotherapy-related nausea; improved nutrition to decrease fatigue; and aromatherapy for increased energy. Participants also used CAM to "detoxify" after cancer treatments, some of which were viewed as poison needing to be eliminated after it had done its work:
I did some detoxing with juices and stuff like that I was putting into my body to take out some of those chemicals that got into it that I don't like in it, like a lot of the radiation.
Emotional toxicities, including depression, irritability, worry, sadness, and hopelessness, were given as reasons for CAM use. One participant said,
I'm taking the ginseng to calm the menopausal symptoms but mostly the emotional stuff, and it has seemed to make a difference. There've been days where I've forgotten, and I've gotten really irritable, have a hard time controlling my emotions, and then I'll do it, and later it just will smooth out.
The religious faith of many participants, particularly African American participants, influenced their choices of CAM therapies. The top five most commonly used forms of cancer-related CAM among African American participants included three related to faith: prayer, spiritual healing, and meditation. One woman described it this way:
So my goddaughter...she brought me some angels [religious symbols], and every day I'd go through there and I'd look at and touch the little angels, and I thought well that just [cheered] me up, you know. And then I had scriptures all over my 'frigerator [visual cues], all through my house, all scriptures in the Bible talking about healing, about breast cancer, so they had all of those scriptures, so I praise God for that. And then my pastor and other people, missionaries and all of 'em were just praying for me [social support].
Many participants reported using faith and support from God to deal with emotional sequelae. God was their partner, their social support, and their confidant. One woman described it:
From the beginning, you know, the Lord is not going to put any more on you than he feel[s] like you can't handle. If you get to a point where you can't handle it all by yourself, he'll help you through it. He gives you the strength some kind of way to get through it ... I knew that I was not going through the first treatment, chemo treatment, when I was not doing that on my own. It was like there was some other force there. I don't know. I never thought about him not being there.
Faith also was important in dealing with the day-to-day physical effects of treatment. One participant described her distress related to alopecia. As her hair was increasingly falling out, she said:
I had been reading the book of Job ... God took me back to that scripture at the beginning when he loses everything, and he said, "The Lord giveth and the Lord taketh away, blessed be the name of the Lord." And so that's what I thought about with my hair, you know, that the Lord gave it and the Lord has taken away, blessed be the name of the Lord. And then at the end of that, he was just like ... always remember that at the end of Job there's restoration, and so that really helped me.
None of the women expected God to prevent cancer recurrence, but their faith complemented and supported their tolerance of treatment. One woman said:
It's so funny because most people would think that you would pray, "Oh, God, heal me, oh, God, heal me," and I recall only a few times that I actually prayed that. Most of my prayers were "God, sustain me," or "God, strength[en] me to get through this," ...
Beliefs about normative health practices negatively influenced use of some CAM therapies, which were described as "weird," "freaky," and "loony." One participant said, "Hypnosis, I think is hokey ... I don't believe in it, and I have no reason for not believing in it other than I don't believe in it." Another said, "I don't want to do anything that I consider extreme, like putting certain chemicals or electricity or magnets in my body, because I don't see that as balance." Some participants qualified their beliefs by saying that if their cancer came back or if things got worse, they might consider additional options. One said, "Fasting? Me fast? If I were dying maybe, if they told me I would live [if I fasted], but that's about it."
Often, participants expressed interest in particular CAM treatments listed on the cards, but they had not used them due to lack of information. They said they required a certain level of information about a CAM before they would use it. Several participants were avid followers of information published by the American Cancer Society and National Cancer Institute. African American women in this study sought more sources of information than the European American women. However, they said information on many CAM therapies was unavailable to them.
Some participants reported aversion to a therapy based on past experience. African American women who declined to use rootwork understood the practice and had made a conscious effort not to use it. They believed rootwork was the work of the devil and its use was making a deal with the devil.
Anticipation of some bad outcome hindered some participants from choosing a therapy. Acupuncture was avoided because of needle phobias. Hypnosis was avoided because participants feared losing control. Other women were averse to aromatherapy because the smells caused chemotherapy-associated nausea. One woman noted, "Every time you smell something, it make you sick. It make you ... throw up some more."
Participants frequently reported a desire to use but could not afford massage. Having little disposable income, they tended to use CAM therapies that did not require money. One woman said, "If I could afford this, it is something I'd definitely want to use. I went the other day, and it was $75 for just one bottle of Co-Enzyme Q10."
The accounts of CAM use in this study point out several underreported and noteworthy findings. First, in their systematic review of CAM use among persons with cancer, Verhoef, Balneaves, Boon, and Vroegindewey (2005) note that methods of studying CAM must provide opportunity for respondents to tell their stories rather than being forced to choose from preconceived notions. The data presented here are grounded in the women's experiences. Information about the variety of interpretations of CAM therapy would not have been gained without this open-ended approach. Using the card sort as a basis for the interview, each woman was able to convey her unique definition of CAM therapies and to discuss the process by which she decided to use them. This is of particular importance for the African American women in this study, as little information is available concerning their CAM practices and breast cancer experiences (Barton-Burke et al., 2006).
Second, although the study sample was small, it provided in-depth insight into the use of CAM by African-Americans-particularly needed since current literature describes CAM use as mainly a European American practice. A major aim of this study was to build on and expand knowledge about CAM use by African American breast cancer patients. In contrast to current literature, this study showed African American women used more types of CAM, more therapies per woman, and different types of therapies related to their cancer than did European American women.
In particular, African-American participants reported using spiritual healing, meditation, prayer, and music to craft a support system that centered on God and faith during the cancer experience. Their stories about breast cancer experiences were interlaced with accounts of the ways their faith helped them to deal with their breast cancer diagnosis, decide about treatment options, tolerate treatment side effects, and interact with providers. This finding is consistent with the few previous studies of African American women coping with breast cancer (Ashing-Giwa et al., 2004; Wilmoth & Sanders, 2001) that describe a deepened relationship with God through an ongoing interchange with God as healer. The role of a healer is very important within the African American community, described as one who has received a gift of healing passed down from family members or in mystical ways such as a miraculous birth or a distinctive birthmark. Conventional biomedical providers also may be seen as healers.
Despite feeling closer to God, participants did not expect God to intervene to prevent their cancer from returning. In another study of women in NC, Lopez, Eng, Randall-David, and Robinson (2005) reported that, for African American women, being healed or cured did not mean their cancer would not recur but that God would take care of them regardless. The women believed this because of personal experiences and the experiences of others they knew who had great faith but succumbed to cancer.
Third, the women defined complementary medicine broadly, including therapies that differed from prevailing definitions of CAM in the literature (Eisenberg, Kessler, & Foster, 1993). Even women with limited finances can benefit from CAM interventions they can practice at home. An exemplar was the inclusion of grocery products with claims to health promotion as CAM. One woman in this study used the breakfast drink Bright and Early(R) as an energy boost instead of the aloe vera juice she had used previously. She classified this drink as a health food supplement, based on advertised claims. This operationalization of a health food supplement is quite different from the types of health food supplements described in the CAM literature, which provide mega-doses of vitamins and minerals far surpassing the standard daily requirements. Lamson and Brignall (1999) discussed the benefits of using health food supplements to augment cancer treatment, but reported studies with doses many times higher than would be contained in a daily glass of orange juice or typical breakfast drink.
Fourth, the therapies used by participants often incorporated elements of alternative healing systems. The NCCAM (2013) defines an alternative healing system as complete systems of theory and practice that have evolved over time in different cultures and apart from conventional or Western medicine. Healing frequently involves marshaling multiple techniques that involve the mind, body, and spirit, with treatments individualized and dependent on the presenting symptoms. In the current study, participants from Christian traditions used religious symbols, prayer, and Scripture to stay healthy during treatment.
Finally, this study has implications for Christian nurses. Participants supplemented the conventional medical treatment with CAM to deal with their breast cancer and improve their general health. They involved medical providers in their decision-making and were not reluctant to disclose CAM use to providers as has been previously described (Boon, Olatunde, & Zick, 2007), but sought medical input to prevent CAM-drug interactions. This research also shows that breast cancer patients engage in self-blame and information seeking. These findings give direction for recommendations by Christian nurses involved in treatment-related care. The positive role of faith and a faith community for the women suggest faith may prove an important adjunct to conventional biomedical treatments. This would seem an opportunity for Christian nurses to impact care and survival in a positive way.
Future research needs to include larger, more diverse samples of breast cancer patients. In addition, prospective longitudinal studies of CAM use from the time of diagnosis into the survivorship period would add to information about the CAM decision-making process, including, but not restricted to, the use of CAM for side effects of differing types of treatments. Women in this study reported using their faith as bedrock for coping with breast cancer. What might be the implications for cancer care following patients from the time of diagnosis through treatment to surviving the sequelae of cancer and its treatment from the lens of Christian faith?
This study points to the potential power of informed providers in guiding patients to use CAM to effectively augment conventional biomedical treatment. Studies on how best to educate providers about CAM, characteristics of CAM users, skills in obtaining CAM-use histories, and current evidence for the efficacy of particular CAM therapies could enhance the patient-provider dialogue about CAM use and potentially benefit both provider and patient.
This article identifies the power of faith during the cancer experience as a form of CAM. All of the women in the study used prayer as an aid during their cancer experience. The one woman who did not pray had her child pray for her because she believed, "God hears the prayers of a child in a special way."
The aim of this study was to explore CAM use and decision-making about using CAM during breast cancer, with a focus on African American patients. The results support and extend some of the issues from current literature, providing new insights into which types of CAM are used by a group of southern breast cancer patients and the influences they deemed important in choosing CAM forms. The results echo other researchers who report that women with breast cancer engage in self-blame about lifestyle factors that may have been related to their developing breast cancer. However, the women in this study made this process of self-discovery an empowering one by adopting positive health behaviors. That the women were using CAM with the knowledge and often the recommendations of their providers, and using their providers as expert resources for such decisions, affirms the potential importance of educating nurses about the evidence base for the efficacy of CAM as well as the potential for CAM to positively impact conventional treatment for breast cancer.
Funding for this research was received from the Center for Innovation in Health Disparities Research (CIHDR) at the University of North Carolina School of Nursing.
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