Support Care Cancer DOI 10.1007/s00520-010-1063-y
ORIGINAL ARTICLE
Perceptions about complementary and alternative medicine use among Chinese immigrant parents of children with cancer Lisa Watt & Sonia Gulati & Nicola T. Shaw & Lillian Sung & David Dix & Iraj Poureslami & Anne F. Klassen
Received: 10 September 2010 / Accepted: 8 December 2010 # Springer-Verlag 2011
Abstract Purpose Research indicates complementary and alternative medicine (CAM) use among children with cancer is common and widespread. CAM use, particularly traditional Chinese medicine (TCM), is prevalent in the country of origin of Chinese immigrant families, yet little is known about its use after immigrating to Canada. This paper describes 25 Chinese immigrant parents’ perception about the use of CAM in their child with cancer in Canada. Methods This qualitative grounded theory study is part of a larger study of the caregiving experiences of first generaL. Watt : S. Gulati : A. F. Klassen (*) Department of Pediatrics, McMaster University, HSC 3A, 1200 Main Street West, Hamilton, ON L8S 4J9, Canada e-mail:
[email protected] N. T. Shaw Health Informatics Institute, Algoma University, Rm. SH 500, 1520 Queen Street East, Sault Ste. Marie, ON P6A 2G4, Canada L. Sung Division of Haematology/Oncology, The Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G 1X8, Canada
tion Chinese and South Asian parents of children with cancer. Chinese parents of children at least 6 months postdiagnosis were recruited from four Canadian pediatric oncology centers. Interviews were conducted in English, Cantonese, or Mandarin and transcribed into English. Analysis involved coding and the use of the constant comparison method to identify important themes. Results In discussing their caregiving experiences, CAM emerged as an important theme. The following sub-themes were identified: (1) trust in conventional medicine to cure cancer; (2) use of dietary modifications and restrictions; (3) extent of communication with healthcare providers about TCM use; and (4) limited availability of culturally relevant information. Conclusions While Chinese immigrant parents in this study placed their trust in conventional medicine to treat their child, the use of food as therapy is part of their daily cultural practice. To ensure safe cancer treatment and more culturally sensitive care, it is essential for health providers to offer reliable information and encourage open discussions about CAM use with Chinese immigrant parents. Keywords Complementary and alternative medicine . Traditional Chinese medicine . Food therapy . Childhood cancer . Immigrant parents . Grounded theory . Qualitative study
D. Dix Department of Pediatrics, University of British Columbia, A119D, 4480 Oak Street, Vancouver, BC V6H 4C9, Canada
Introduction
I. Poureslami Respiratory Medicine Division, Faculty of Medicine, University of British Columbia, VCH Research Institute, Room 716, 828 West 10th Avenue, Vancouver, BC V5Z 1M9, Canada
Complementary and alternative medicine (CAM) refers to “a group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine” (see Table 1) [1]. CAM
Support Care Cancer Table 1 Categorization of CAM therapies by the National Center for Complementary and Alternative Medicine1 Whole medical systems Built upon complete systems of theory and practice Examples are: homeopathic medicine, naturopathic medicine, traditional Chinese medicine, Ayurveda Domains of CAM
Mind-body medicine
Biologically based practices
Manipulative and body-based practices
Energy medicine
Definition
A variety of techniques designed to enhance the mind's capacity to affect bodily function and symptoms. Meditation, prayer, mental healing, art, music, or dance
Substances found in nature, such as herbs, foods, and vitamins.
Based on manipulation and/or movement of one or more parts of the body
Use of energy fields. There are two types: biofield therapies and bioelectromagneticbased therapies
Dietary supplements, herbal products, and the use of other socalled natural but as yet scientifically unproven therapies
Chiropractic or osteopathic and massage
Qi-gong, reiki, therapeutic touch; pulsed fields, magnetic fields, or alternating current or direct current fields
Examples
use is popular worldwide among adults and children with cancer [2]. About 25% to 84.5% of children with cancer were given some form of CAM during treatment as shown in recent research [3–15]. These studies, although not conclusive due to methodological differences and inconsistent definitions of CAM [2], indicate that CAM use as an adjunct therapy is common and widespread among children with cancer. Despite the increasing interest and popularity in CAM use, the safety and effectiveness of CAM use among children with cancer is under-researched [16]. The lack of scientific evidence and the likelihood that parents will not disclose their use of CAM to their child's healthcare providers [3, 6, 7, 10] may put these children at risk of potentially experiencing drug interactions and toxicity. Since parents are instrumental in deciding CAM use for their children, understanding parents' perceptions about the use of CAM in their children is warranted. In Canada, immigrant families comprise a large segment of the population. The 2006 Census indicated that 19.8% of the Canadian population is foreign-born [17]. Despite this growing diversity, limited research has examined the impact of ethnicity on CAM use among immigrants [18–22]. These studies indicated that ethnic differences and cultural factors influence the frequency and type of CAM used in adults; with herbal medicine, a form of traditional Chinese medicine (TCM), being mostly used by Chinese people [18–22]. Chinese individuals were of particular interest to our research team because they were the largest visible minority group in Canada in the 2006 Census [23]. CAM use, particularly TCM, is considered the mainstream medical system in China and has a long history of use in China, Hong Kong, and Taiwan [7, 24]. While CAM use is
prevalent in the country of origin of Chinese immigrant families [7, 24], little is known about their use of CAM after immigrating to Canada. Our study describes Chinese immigrant parents' perceptions about the use of CAM, more specifically the use of TCM, in their child with cancer in Canada.
Methods Study design The results described in this paper are from a larger qualitative study that examined the caregiving experiences of first generation Chinese and South Asian parents of children with cancer [25]. A constructivist grounded theory approach was used [26]. This approach lies in the interpretive tradition where the focus of inquiry is on the meaning and social processes of a social situation. Data collection and analysis was inductive; important issues emerged directly from the stories and experiences of participants. Participants A purposive sample of 25 Chinese parents was recruited over a 24-month period (December 2007 to December 2009). Parents of children (aged 18 years or younger) with any type of malignancy were invited to participate as long as they met the following inclusion criteria: the child was at least 6 months post-diagnosis; the child was not considered palliative (no reasonable chance of cure); the parent was the child's primary caregiver (person most responsible for the
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day-to-day care and decision-making); and the parent was a first generation immigrant to Canada willing to be interviewed in English, Mandarin, or Cantonese.
Results
Procedure
All 25 parents who consented to participate were interviewed. Participant demographics are summarized in Table 2.
Ethical approval was obtained from each participating center and procedures were followed to ensure the confidentiality and anonymity of all participants. The Chinese parent was approached by a staff member to participate only when their child's health was stable. An introductory letter explaining the nature and purpose of the study and a consent form was given to them in the hospital. Study materials were made available in both English and Chinese. Parents who consented to being contacted by the research team were interviewed at a location and time at their convenience. Before conducting the interview, informed consent and the agreement to be audio-recorded was reconfirmed. Data collection and analysis All parents participated in a semi-structured interview that involved the use of an interview guide. On average, interviews lasted 83 min (ranged from 28 to 148 min). Interviews began with having parents tell the story of how they first noticed something was wrong with their child. Questions and probes were designed to encourage parents to discuss their experiences in depth, and to speak about issues of importance to them. The interview guide was revised regularly to gather further data that elaborated on the emerging themes. For example, the use of herbal soups for the child emerged as an important and frequent issue for Chinese parents. Accordingly, probes exploring the use of CAM were added. Interviews were digitally recorded. All interviews were translated and transcribed into English, and checked by another person to ensure accuracy. Sociodemographic information was collected during the interview. Transcripts were analyzed as soon as they were available. Initial line-by-line coding was conducted independently by two members of the research team, who then met to discuss coding discrepancies and establish consensus. Research team meetings were used to discuss each transcript and emerging themes. Focused and theoretical coding were used to sift through large amounts of data and to further strengthen the initial codes that made more analytical sense using progressively higher levels of abstraction. Constant comparison was used to examine relationships within and across codes and categories. A memo on CAM was written to further explore and develop the interpretation of this emerging theme. Data collection and analysis occurred concurrently until no new themes emerged. © QSR NVivo 8 software was used to manage the data [27].
Participants
Perceptions about the use of complementary and alternative medicine CAM, more specifically the use of TCM, emerged as an important theme, and further examination of the data resulted in the sub-themes discussed below. Trust in conventional medicine to cure cancer All parents believed that conventional medicine was more effective than CAM in curing childhood cancer. Parents' trust in conventional medicine came from learning from the healthcare team that childhood cancer treatment is based on years of scientific investigation and clinical studies that provided evidence for the safety and effectiveness of treatment. The safety and effectiveness of TCM, on the other hand, was seen to lack clinical research evidence; one father described that the success rate of TCM is like “a blind cat bumping into a dead mouse”. Unlike conventional medicine, parents believed the success of TCM cannot be easily proven or guaranteed through clinical trials. Most parents were aware of the possibility of adverse drug interactions if TCM is used simultaneously with conventional chemotherapy. Parents highlighted the importance of focusing on conventional medicine and many recommended not mixing TCM with chemotherapy for fear of causing harm to the child or lessening the effects of chemotherapy, as illustrated by one mother: “You have to trust the western medicine, because they are results of many years of experiments. You should not try to mix it up with Chinese medicine or alternate medicine to confuse the issue.” There was consensus among parents that conventional medicine is fast and effective in curing cancer; however it was also viewed as intrusive and that children can often experience a range of short- and long-term side effects from such treatment. Although, parents often desired to utilize other complementary forms of therapy to help nurture and restore child's health, they were willing to wait to try these complementary remedies until the child's cancer treatment was completed. Another mother summarized her views on Western and Chinese medicine as follows: “In the area of cancer, Western medicine is more advanced. I think, in terms of nurturance, Chinese
Support Care Cancer Table 2 Sociodemographics of participants
Characteristic
N or mean (range or %)
Parent Parent age in years, mean (range) Female Married Annual household income Decline to disclose Length of time in Canada (years) Country of origin China Hong Kong Taiwan Vietnam Thailand India Child
40.7 22 21 $58,800 1 14
12 (48%) 8 (32%) 2 (8%) 1 (4%) 1 (4%) 1 (4%)
No. of male Child age at diagnosis, mean (range) Cancer type Leukemia Lymphoma Sarcoma Neuroblastoma Brain cancer Wilm's tumor Liver cancer Treatment status No. in follow-up No. in active treatment No. relapsed
medicine is better. I think afterwards, now, we are talking about afterwards, how do we nurture his body, we may, we are hoping that we can have Chinese medicine.”
Use of dietary modifications and restrictions All Chinese participants appeared to have a general cultural understanding of TCM as a way to maintain health and well-being, as one mother expressed: “As Chinese, we are in touch with it from a very young age till now”. Twentyone (84%) parents talked about their views about the use of TCM; one parent strongly opposed its use and many cautioned against the use of TCM during chemotherapy while supporting its use at the conclusion of treatment for nourishment purposes. Nourishment or use of tonic food (Chin-Pu) [28] is a very common Chinese cultural practice. According to Chinese medicine, illness is caused by the disharmony of yin and yang [28]; therefore to be healthy, it
(32–52) (88%) (84%) ($10,000–$180,000) (4%) (3–32)
18 (72%) 5 days (At a few days to 14) 13 2 4 3 1 1 1
(52%) (8%) (16%) (12%) (4%) (4%) (4%)
15 (60%) 10 (40%) 1(4%)
is essential to restore the yin–yang balance by the use of tonic food or by food abstention (i.e., abstaining from food that is considered bad for certain health conditions) [28]. Generally, parents perceived that conventional medicine and treatments have the effect of weakening the body, which in TCM means the weakening of qi (energy) [29]. Thus, it is seen as extremely important to nurture the body after an illness. Most parents mentioned paying more attention to food after the child was diagnosed with cancer, as described by this mother: “There's too much hot gas [surplus of yang], this and that. When he's on it [chemo], the digestive system is not as good. So we will have some secret formula—to tell you the truth, us Chinese, if your eyes are not good, you can add goji berries, so on. Those are not medicine, right. Do Caucasians have those? No, right?” Sixteen (64%) parents reported using more than one tonic food, such as herbal soups, supplements, and/or avoiding eating certain foods that were thought to encourage the growth
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of cancer cells (see Table 3). Since the use of tonic food and herbal soup is a common way to maintain health and harmony of the body in Chinese culture, most parents did not equate it with “real” medicine: “Yes, I don't like to say medication, but it's kind of like a soup. You know the Chinese soup you bought, it had herbs in it, right?” The primary reason for use reported by these parents included lessening pain and side effects of chemotherapy, balance and harmonize the body, restore internal organs, boost the immune system, and prevent relapse. Parents' decision to use TCM aligns with their cultural understanding of yin–yang balance and their values on a holistic approach to maintaining health: “I tried to take him to see the Chinese medical doctor. Because I think seeing the Chinese medical doctor, I am not asking him to cure his illness, I want him to help nurture his body, to become stronger…it's like a holistic, the whole body's health to see which area needs more strength, or which area is weaker, so the whole person is in balance.” While the majority (81%) of CAM users utilized some kind of TCM after the child finished active treatment, there were three parents that claimed to use TCM while the child was in active treatment. These parents made an effort to ensure that the child did not receive any TCM on the day of treatment as described by this mother: “He started to intake Reishi mushroom pills, winter worm summer grass…so during the few days that he Table 3 CAM used by Chinese immigrant parents of children with cancer Types of CAM
N=16a
Percentage
Use of tonic food Herbal soup
7
44
3 5 2 1 1 1 1
19 31 12 6 6 6 6
2 2 3 2
12 12 19 12
Reishi mushroom soup Winter worm summer grass herb soup Reishi mushroom supplement Bird's nest Cactus drink Houttuynia Bee pollen Food abstention Bird's nest Fallopian tubes of frogs Meat Not specified a
The number represents the number of parents reported using CAM
receives chemo, he doesn't take them. So before or after, he will intake them non-stop, hoping that it will lessen some of the side effects.” Extent of communication with healthcare providers regarding TCM use The majority of parents did not initiate a discussion with their healthcare providers regarding the use of TCM mainly because they did not plan to use it during treatment. Only eight parents discussed TCM use with their healthcare providers, of which five were initiated by the attending oncologist. These parents followed their healthcare provider's advice not to use TCM due to the lack of evidence supporting its effectiveness and the potential for toxicity: “So, throughout the whole process, I didn't add any… I respected more the advices provided by the doctors here. Of course, I understand that in the Western health care system, it cannot possibly be like in China, for example to combine Traditional Chinese Medicine with Western Medicine or something.” The above mother followed the advice of the healthcare provider despite her interest in TCM use. There were three parents that utilized some form of TCM during treatment, but did not have any discussions with health care providers because they believed that medical staff trained in conventional medicine may lack adequate knowledge of TCM and would disagree with its use: “Winter worm summer grass, how can you expect them to understand, he's Caucasian. Even if you went to Harvard, they won't study this. So he won't understand. He will, once he hears about it, he will have a huge reaction, because he will think that you are giving him [child] Chinese medicine…Because they don't know what you found to give him to eat, so it will affect the [treatment].” To maintain a harmonious relationship with healthcare providers, these parents kept their use of TCM a secret and monitored the effects of TCM use on their own. Parents did not report any side effects from using these remedies. Limited availability of culturally relevant information Parents described receiving most of the information about TCM through the “traditional wisdom” of family and friends in their ethnic community or through the Internet. Only a few parents consulted a doctor trained in TCM. Some parents expressed receiving insufficient information from the hospital especially in the area of diet and food. Parents felt that the information was inadequate or not relevant to the Chinese understanding of food and health:
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“The cultures are different regarding food, the things he [dietitian] was talking about...like cheese and milk, and such...in my opinion, I felt, maybe, it's not good to eat too much of…It was different from us, the Eastern culture would recommend, since you're sick, maybe you should eat more of something.” This mother felt that the information provided by the hospital did not address her concerns, which she attributed to healthcare providers not being well versed in how Chinese culture conceptualizes health and illness, and how food is intrinsic to the maintenance of health. Many parents, similar to this mother, expressed a desire for more culturally appropriate information on food, diet, and complementary medicine. Parents wished that more research on the safety and effectiveness of TCM would result in hospitals providing more information to parents. Parents saw the strengths and weaknesses of TCM and conventional medicine, and hoped that future research would combine the benefits of both approaches in order to better treat children with cancer; as expressed by one father: “If they do more research, some research on herbal medicine in Traditional Chinese Medicine. There are things that are really amazing. There are so many herbal medicines, it must have, for so long, five thousand years…some people were cured and some people were not cured. But if we could analyze all these, we might be able to find an even better [treatment].”
Discussion To our knowledge, our study is the first to look at Chinese immigrant parents' perception and use of CAM in childhood cancer. The findings provide valuable insights about the type of CAM used, reasons for its use, and the importance of CAM use among this population, and add to the limited literature that looks into the impact of ethnicity on CAM use in cancer patients. Our finding of high levels of parent-reported use of CAM in children with cancer either on or off treatment is in line with other studies focusing on children with cancer [3, 6–8, 15]. Due to the differences in research design and definition of CAM, we cannot conclude that CAM use is higher among the Chinese population. Nevertheless, our study indicated that CAM use is common and many children with cancer in Chinese immigrant families are exposed to CAM during treatment. The belief underpinning CAM use in Chinese parents impacts the choice of CAM used in their child with cancer. Chinese users of CAM put greater emphasis on restoring
internal organs and maintaining a holistic balance of the whole body. This philosophical belief of balance and harmony, often referred to as theories of yin/yang is the foundation of Chinese beliefs that are used in defining and explaining the nature of all phenomena, including health, illness, and medical treatment [29]. Thus, it is not surprising that Chinese parents described using tonic food to restore balance and nurture child's health after treatment, particularly as treatment was perceived as weakening the body's energy (qi). The use of herbal remedies and supplements is consistent with other studies conducted with the Chinese population [7, 20, 24]. While these herbs are considered as a type of TCM, not all parents viewed them as medicinal because the use of tonic food is a natural part of Chinese cultural practice. A similar finding is reported in another study conducted with Chinese adult cancer patients where participants did not consider TCM a form of CAM [20]. Even though parents in our study were cautious about the danger of toxicity when TCM is used together with chemotherapy or during active treatment, given that there is some overlap between the ingredients in an Eastern diet and what is considered as tonic food or TCM, many parents self-administer Chinese tonic foods daily to maintain their child's health without feeling the need to inform their healthcare providers because they did not think that they are administering TCM. Our finding highlighted the blurry boundary between tonic food and TCM. Around 59% of CAM users in our study did not inform their healthcare providers about their CAM use. This may be because most parents utilized TCM after treatment was completed. Only a small number of parents used TCM during the active treatment phase and these parents did not tell their healthcare providers but rather admitted to intentionally hiding their TCM use. Their reasoning was that the healthcare providers lacked knowledge about TCM and would object to its use due to the possibility of interference with treatment. To avoid any conflict, these parents monitored TCM use on their own. In Chinese culture, TCM plays an important role in maintaining health and well-being. The parents in our study wanted to do everything possible to help their sick child. However, these therapies are not provided by the healthcare team and parents had to rely on their own resources. Currently, there are limited institutional CAM resources and policies available in the pediatric oncology centers in Canada [30]. While non-harmful therapies should not be discouraged, more reliable information about the potentially adverse drug interactions that can occur between specific CAM and conventional cancer therapies is needed [31, 32]. In order to ensure the safety of each child diagnosed with cancer, healthcare professionals need to initiate an open conversation about the use of CAM, particularly the
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use of tonic food, with every Chinese family in their care, discuss its use in a positive and open-minded manner, and engage and support parents in making safe and informed decisions. Training of health providers about CAM is important to facilitate this conversation. It is also easier to document and monitor the use of CAM if one is aware that families are using it. Parents' interest in having more evidence in the effectiveness of CAM suggests that research on CAM should be a priority. Currently, the Children's Oncology Group has made a commitment to CAM research in childhood cancer, beginning with studies on CAM in the area of supportive care [33]. A limitation of this study is that it has not been designed to specifically study CAM use. However, the use of CAM emerged from parents' stories without being asked, and was then added to our interview guide to explore in further detail. Second, there is a possibility of recall bias since parents were asked to reflect on their experiences base on memory. It is possible healthcare professionals may have been less likely to inquire about CAM use in the past. Finally, our findings may not be transferrable to ethnic groups other than Chinese as they may not share the same cultural understanding of CAM use. In conclusion, as Canada's population becomes increasingly diverse and more people use CAM, it is imperative that healthcare professionals adapt to Canada's cultural diversity by having a better understanding of the perceptions of health and illness from different cultural groups, and the meaning that underpins their health-seeking behaviors. Advancements in treating childhood cancer over the past decades have been possible because of the joint effort and commitment of the medical community worldwide in conducting collaborative research. The same joint effort and commitment, in addition to working with patient advocates and regulated CAM practitioners, is needed for the study of CAM [16]. Acknowledgments This research project was conducted with support from C17 and funded by Childhood Cancer Foundation— Candlelighter's Canada, and Canadian Cancer Society (grant #18043). Anne Klassen and Lillian Sung are recipients of Canadian Institute of Health Research career awards. Financial disclosure There is no conflict of interest identified. The corresponding author has full access to all primary data and can be reviewed if requested.
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