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Exploring the influence of Traditional Chinese Medicine on self-care among Chinese cancer patients
European Journal of Oncology Nursing 18 (2014) 445e451
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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Exploring the influence of Traditional Chinese Medicine on self-care among Chinese cancer patients Helen Y.L. Chan a, *, Y.Y. Chui a, Carmen W.H. Chan a, Karis K.F. Cheng b, Ann T.Y. Shiu a, Winnie K.W. So a, Simone S.M. Ho a, Maggie M.F. Chan c a b c
The Nethersole School of Nursing, The Chinese University of Hong Kong, Shatin, Hong Kong, China Alice Lee Centre for Nursing Studies, National University of Singapore, Singapore Department of Clinical Oncology, Pamela Youde Nethersole Eastern Hospital, 3 Lok Man Road, Chai Wan, Hong Kong, China
a b s t r a c t Keywords: Self care Chinese Traditional Chinese Medicine Qualitative studies
Purpose: The aim of this study was to explore the influence of traditional Chinese medicine (TCM) on self-care among Chinese cancer patients. Methods: This was an exploratory qualitative study. A purposive sample of thirty cancer patients who were currently undergoing either chemotherapy or radiotherapy was interviewed. Qualitative content analysis was conducted for data analysis. Results: Two core categories were emerged from their accounts of experiences with practising TCMsupported self-care activities: perceived beneficial effects and concerns about undesirable effects. The perceived beneficial effects of these self-care activities were mainly stemmed from the traditional beliefs in TCM, which included: strengthening the “origin”, removing toxins, and mind-soothing. Concerns about undesirable effects of these self-care activities were raised due to lack of knowledge and unpleasant experience with these self-care activities. Conclusion: The findings revealed that the philosophy of TCM had been deeply integrated by Chinese cancer patients into their self-care. While Western medicine is the mainstream cancer treatment, Chinese cancer patients also practised various TCM-supported self-care activities. However, they were perplexed about the effects of these self-care activities. They could not ascertain whether the perceived benefits were just due to their own belief in the TCM philosophy, and their lack of knowledge in this aspect and unpleasant experience further confused them. Nurses have to be proactive in identifying the unique health-deviation self-care requisites of their clients in a culturally sensitive manner, explore how their self-care experience affects their wellbeing and treatment compliance, and be prepared to clarify misconceptions about their conditions and progress. © 2014 Elsevier Ltd. All rights reserved.
Introduction Self-care is defined as learned behaviours initiated and performed by an individual personally in response to perceived health changes with an intention to promote health and well-being, prevent disease or health deterioration, and care for long-term conditions (Department of Health, 2006; Orem, 2001; World Health Organization, 1984). Such acts are known as health deviation selfcare requisites resulting from injury, disease and its treatment,
* Corresponding author. The Nethersole School of Nursing, The Chinese University of Hong Kong, 7/F. Esther Lee Building, Shatin, New Territories, Hong Kong, China. Tel.: þ852 3943 8099; fax: þ852 2603 5269. E-mail address: [email protected] (H.Y.L. Chan). http://dx.doi.org/10.1016/j.ejon.2014.05.005 1462-3889/© 2014 Elsevier Ltd. All rights reserved.
according to Orem's theory of self-care (Orem, 2001). Although the effectiveness of cancer treatment has been greatly improved in recent decades and become the dominant approach, it has been widely reported that cancer patients practised different self-care activities as complementary means to manage the physical and emotional impacts of cancer and its treatment (Kidd et al., 2008; Lou et al., 2013a). Given that these self-care activities might have significant impacts on patients' health and wellbeing, treatment effects and compliance, as well as healthcare utilization, the concept of self-care has been examined extensively among cancer patients. Studies found that patients practised self-care to alleviate distress, such as fatigue, nausea and vomiting, and to learn to live with the effects of cancer and its treatment (Lou et al., 2013b; Williams et al., 2010a, 2010b, 2006). Apart from the substantial evidence of the beneficial effects
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of various self-care activities on clinical outcomes (Hoffman, 2013; Lou et al., 2013a, 2013b; Williams et al., 2010a, 2010b, 2006), literature also suggests the importance of self-care in psychological wellbeing. Knobf and Sun (2005) found that engaging in self-care activities is an integral component of the coping process among cancer patients, based on the self-regulation theory. Kidd et al. (2008) also noted that active participation in self-care activities enables cancer patients to preserve a sense of normality and self-identity. Therefore, cancer patients are being increasingly encouraged to take a proactive role in self-care (Lorig and Holman, 2003). Williams and associates had compared the cross-cultural differences in selfcare activities among cancer patients in the Midwestern United States, Philippines and China and they found that many self-care activities stemmed from folk remedies within the cultural context (Williams et al., 2010a, 2010b, 2006). Hence, self-care appears to have both medical and social connotations, and thus the practice of selfcare has to be understood in the personal and cultural context. However, recent studies on self-care have been largely quantitative, limited to the efficacy of self-care activities and among patients in western countries. Little work has been done to explore the nature of the self-care activities in Chinese cancer patients and their experiences with their self-care activities. Traditional Chinese Medicine (TCM), which is generally delivered by qualified practitioners, has been practised for thousands of years in the Chinese culture. TCM comprises different modalities, including herbal remedies, dietary therapy, acupuncture, Chinese massage (tuina), moxibustion, cupping, and mind-body therapies such as qi gong and tai chi (National Center for Complementary and Alternative Medicine, 2010). Despite their different natures, the guiding principle of all these practices is to restore the yin (陰)-yang (陽) balance and promote the circulation of the qi (氣) in the body to enhance immunity and reduce toxicities (Wong et al., 2001; Xu et al., 2006). Yin and yang are two opposite counteracting forces in the body and qi is a vital energy or force which circulates through meridians in the body (Konkimalla and Efferth, 2008; Lu et al., 2004; Schwartz, 2004). From the TCM perspective, cancer is understood as a result of yin-yang imbalance and qi stagnation in the body, rather than a stand-alone diagnosis (Cohen et al., 2002; Schwartz, 2004; Wong et al., 2001; Xu et al., 2006). In addition, chemotherapeutic agents further act as heat toxins that damage the yin and the qi in the body, thus contributing to compromised immunity and cancer recurrence (Wong et al., 2001; Xu et al., 2006). This may explain why several studies have shown that the use of TCM is widespread among Chinese cancer patients as an adjuvant to Western medicine (Chen et al., 2008; Choe et al., 2006; Chui et al., 2005; Cohen et al., 2002; Cui et al., 2004; Simpson, 2003; So et al., 2012; Wong et al., 2001; Xu et al., 2006). Different TCM modalities are used to harmonize the balance and enhance the flow of the qi in the body with the intention of increasing immunity and preventing metastasis (Cohen et al., 2002; Konkimalla and Efferth, 2008; Lu et al., 2004; Wong et al., 2001; Xu et al., 2006). In the Chinese culture, the philosophy of TCM is woven into every aspect of daily life for health maintenance, because it is believed that health is achieved through continual efforts to maintain yin-yang balance and the smooth circulation of qi (Schwartz, 2004). With a long tradition in the culture, some common health management strategies supported by the philosophy of the TCM have been passed on through generations. Hence, most of the Chinese people have some knowledge of TCM, even though they have not received any proper training (Simpson, 2003). It is not surprising to find that Chinese people often interpret their health conditions in TCM terms, based on their understanding of it, and believe in their ability to manage their health problems with their knowledge and skills through self-care activities. However, much previous research has mainly focused on examining the effects of discrete TCM modalities,
such as herbal medication and acupuncture, on symptom management in cancer patients (Hopkins Hollis, 2010; Lee et al., 2011; Molassiotis et al., 2009). Little is known about how the philosophy of TCM has impacted the self-care of Chinese cancer patients. This study would be valuable in complementing to existing literature on patient-centered and culturally-focused self-care. Aim Given that TCM may play an important role in shaping the selfcare activities of Chinese cancer patients, the purpose of this study was to explore how the philosophy of TCM has influenced self-care among Chinese cancer patients in Hong Kong. The specific objectives of this exploratory qualitative study are (1) to understand the reasons why Chinese cancer patients practise self-care activities underpinned by the TCM philosophy, and (2) to understand their experiences and perceptions of these self-care activities. Methods Setting and participants This study was conducted at the oncology outpatient department of an acute hospital in Hong Kong. Purposive sampling was used to recruit cancer patients who i) were aged 18 years or above; ii) were able to speak Cantonese; iii) were currently receiving either chemotherapy or radiotherapy; iv) had a score of Karnofsky Performance Status (KPS) 60 (Karnofsky and Buchenal, 1949) and; v) had experience of, or were currently practising, any self-care activities which are related to the TCM philosophy. As this is an exploratory study, it was planned to recruit 15 participants for each treatment group (chemotherapy and radiotherapy), with both genders equally represented. This sample size was determined based on the nature of the study topic, scope of the study, quality of data and study design (Morse, 2000). Data collection Permission for the study was obtained from the University Survey and Behavioural Ethics Committee and the Cluster Research Ethics Committee. This study was undertaken by a research team with seven nurse researchers who were experienced in qualitative research and oncology care, and one experienced nurse who was currently working in an administrative role in the oncology department. All of them supported the study in different capacities, from the study conceptualization to data analysis. Prior to data collection, participants were given information about the purpose of the study and they were informed of their rights to withdraw from the study at any time without any adverse consequences to their treatment. After written informed consent was obtained, semi-structured interviews were conducted individually with the participants. An interview schedule was prepared by four researchers (YC, CC, KC & AS). All interviews were conducted by a trained research nurse, who had been involved in many oncology research studies, to ensure the consistency of the data collection. Interviews were conducted in a private room at the oncology outpatient department using the interview schedule (Table 1). Participants were asked in the interviews to share their experiences and perceptions of self-care activities they had practised which are related to the TCM philosophy. Data analysis Qualitative content analysis was used to describe the phenomena of interest in a systematic and objective way (Morse, 1994). All audiotaped interviews were transcribed verbatim and analysed by
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two researchers (HC & AS). Initially, they read the interview transcripts individually to gain an overall picture of the data, and identified significant statements and phrases in the data. They undertook coding line-by-line independently. Codes related to similar entities were then clustered into subcategories and condensed into categories through abstraction. Throughout the data analysis process, they had meetings to achieve consensus on the emerging codes and categories. To enhance the rigour of the study, the following strategies were employed (Lincoln and Guba, 1985). The interview transcripts were checked for accuracy to ensure a complete account of participants' responses. This reduced the risk of selective filtering of data through recall or summation. The credibility of the inquiry was ensured through investigator triangulation and peer debriefing in the data analysis process to prevent biased decisions and idiosyncratic interpretation of data. Peer debriefing was performed by holding meetings with all other researchers in the team.
Table 2 Participants' demographic characteristics (N ¼ 30).
Results Participants' characteristics Thirty participants were interviewed, half of them female. Their mean age was 53.6 years, ranging from 28 to 76 years. The majority of the participants were married with children and had received secondary education or above. The distribution of monthly household income of the participants was comparable to the relevant distribution in 2010 in Hong Kong (Census and Statistics Department, 2012). Their primary sites of cancer varied, including breast, prostate, stomach, ovarian, colorectal, lung, kidney, nasopharyngeal and vocal cord. About half of them were at stage 1 or 2. They had known about their cancer diagnosis for a mean period of 22 months (SD 31.2 months). Regarding the cancer treatment, seven participants received chemotherapy only, five received radiotherapy only, and the remaining 18 participants underwent a combination of chemotherapy and radiotherapy. Tables 2 and 3 show the participants' demographic and clinical characteristics respectively.
Strengthening the “origin” Many participants worried that cancer is traumatic to the “origin” in the body, in particular the qi. Therefore, they prepared soups or dishes with specific ingredients in the belief that these can Table 1 Interview schedule. 1. Could you describe the self-care activities/strategies you have used during cancer treatment which are supported by the philosophy of Traditional Chinese Medicine? 2. How did you learn these self-care activities/strategies? 3. Could you share your experiences with these self-care activities?
Variables
Frequencya
Age (years) Age groupc 21e30 31e40 41e50 51e60 >60 Gender Female Male Marital status Married/Cohabitated Divorced/Separated Single Education level Primary school Secondary school Tertiary education Working status Full-time working Part-time working Unemployed Average household income (HKD) 10 000 10 001e20 000 20 001e30 000 30 001 Unknown
54.3 ± 11.8b 1 2 9 9 8 15 15 24 3 3 3 17 10 14 1 15 5 9 5 7 4
Abbreviation: HKD, Hong Kong Dollars. a Data are presented in terms of frequency, unless otherwise specified. b Values given are mean ± SD. c one informant refused to disclose his age.
help to replenish the qi for the goal of health restoration in the TCM view: I often cooked the kinds of soup which are fortifying to health…I will cook American ginseng soup and stewed black-boned chicken with Korean ginseng as these ingredients can replenish the qi. Since I had the problem of severe bleeding during defecation before, and also I lost a lot of blood during the
Perceived beneficial effects From the participants' accounts of their perceptions of these self-care activities, two core categories were emerged: perceived beneficial effects and concerns about undesirable effects. Table 4 presents the core categories and subcategories. The participants practised self-care activities underpinned by the TCM philosophy, as they believed these can help to enhance their body's resistance by strengthening the “origin” (固本培元) in their body, prevent cancer recurrence and alleviate the discomforts resulting from the disease and its treatment by removing toxins (排 毒) in their bodies, which were believed to be the root cause of cancer, and optimise their psychological wellbeing by soothing their mind.
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Table 3 Participants' clinical characteristics (N ¼ 30). Variables Cancer diagnosis Breast cancer Stomach cancer Lymphoma Lung cancer Nasopharyngeal carcinoma Colorectal cancer Gynaecological cancer Prostate cancer Kidney cancer Vocal cord cancer Stage I II III IV Unknown Mean period of cancer diagnosis ± SD (months) Treatment plan Chemotherapy Radiotherapy Combined chemotherapy & radiotherapy a b
Frequencya 9 4 4 3 2 2 3 1 1 1 6 8 4 5 7 22.1 ± 31.2b 7 5 18
Data are presented in terms of frequency, unless otherwise specified. Values given are mean ± SD.
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Table 4 Participants' perceptions towards TCM-supported self-care activities. Core category
Subcategory
Perceived beneficial effects
A A A A A
Concerns about undesirable effects
Strengthening the “origin” Removing toxins Mind-soothing Lack of knowledge Unpleasant experience
Our diet should not be too “supplementing”, otherwise the cancerous cells will be well fed and develop rapidly. If you are well nourished, the cancerous cells will absorb the nutrients faster than your normal cells. If you have only bland food, like vegetarian, these cancerous cells will starve to death. (RF2)
Mind-soothing operation, I always feel faint. All these damage my qi. When the qi is restored, my energy would be restored. (CF5) For similar purposes, some participants also took over-thecounter Chinese herbal products prepared in the format of tea or capsules in the hope of increasing their inner resistance. My friends suggested me taking this Yunzi-derived product. Yunzi is mainly for enhancing the immunity and fortifying the health. These cancer treatments are harmful to the body…The chemotherapeutic agents indeed are toxic and that's why I have hair loss and my fingers are bruised. In TCM terms, they are harmful to kidney and spleen, so it is necessary to recuperate the body. (RF7)
Removing toxins Most of the participants generally believed that the cause of cancer was the accumulation of toxins, which were the results of excessive heat in the body in TCM terms. The cancer treatment itself would further lead to excessive heat (i.e. yang) in the body despite its intended effects. Hence they hoped to eliminate the toxins in their bodies through diet modification as well: I take the Lingzhi (Ganoderma) powder for clearing heat (清熱) in the body. Also, I added Chinese yam and Wolfberries into soup and cooked chrysanthemum tea. Perhaps the heat was dispersed after taking these I feel more comfortable after taking these. (CM7d) I cooked soup once every two days and added corn, pear, Chinese pearl barley or fish maws into the soup. Radiotherapy made me dehydrated because the treatment is of the nature of dryness and heat. The pain from sore throat hinders me from drinking water. The effects of these kinds of soups are moistening and yin-enriching (滋陰). (RF2) I cooked soup with Burdock. The soup was clear and sweet. It could remove heat and toxins in my body. It was really good for my bowel…it helped to relieve constipation. (RF4) Another participant suggested another type of self-care activity which could promote blood circulation and the flow of the qi through meridians for detoxification: Every night, I soaked my feet in hot water with ginger…It was said that this method can lead to perspiration and thus remove toxins. As we know, ginger is of hot nature [in TCM concept], so it can promote your blood and the qi circulation. (RF1) In addition, a number of participants tended to avoid certain kinds of food that are traditionally considered as toxic to the body in TCM, such as beef, poultry, seafood, lamb, deep-fried food or cooked food kept overnight. As many kinds of food have to be avoided, several participants even changed to a bland diet or became vegetarians. One participant explained his diet change in such way,
Health was perceived by participants in a holistic sense, and thus some of their self-care activities pertained to nurturing their mind. They practised tai chi or qigong as they learnt from mass media and friends that these practices are advocated in TCM for maintaining a peaceful mind. In addition, they considered the slow bodily movements and coordinated breathing in these practices could help to improve their health: I was told that qigong can help to promote blood circulation. I took it as exercise. I used it to help me relax and distract me from negative emotions…I just do not want to think too much. (CLM1d) I am not sure whether my health has really been improved after I have practised tai chi, but at least I found myself relieved, that means psychologically better. Now, I persevere with my practices. I take it every day …. It becomes my spiritual sustenance for self-help. This is better than taking medication, much better. (RM3d)
Concerns about undesirable effects While nearly all participants shared that they felt better after practising self-care activities based on the TCM philosophy, some of them also questioned if these effects were just due to their preconceptions and expectations. The feeling of uncertainty was particularly apparent among those who expressed concerns about undesirable effects of practising these self-care activities due to lack of knowledge and unpleasant experience in their sharing. Lack of knowledge Several participants were aware that they did not have sufficient knowledge about their self-care activities. Though they understood that these activities had been practised for a long time in the Chinese culture or explained by TCM theories, they worried that they lack the knowledge on how to implement them. Some of them also questioned if these activities had been scientifically proven with evidence. One participant raised the concern, I do believe that boiled water with red dates will work in anemic condition, but to what extent? I do not know how much should I take? How long should I take? What should be the concentration? There is no information. (CF1) Another participant also questioned that, In the previous time, my platelet count and white blood cells were low. The physician suggested me to take supplements… something like milk powder with additional nutrients. I worried that it might nourish the cancerous cells, though this is not of concern from the perspective of Western medicine. Instead, I took water boiled with peanut red skin or pig liver. But, I don't know how long it would take before we would see the effects. (CLM3d)
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Likewise, some participants also wanted to clarify the ingredients of the TCM-related health products they got over the counter or the quality of the herbs they had been using in self-care activities: There are many over-the-counter health products which claim to be developed based on TCM formulae, but we cannot be sure of the amount of the ingredient, also whether the manufacturer has mixed other ingredients into these products. (CF6) I know some herbs are useful in managing health problems, but I also have some reservations about their effects. In the past, people collected fresh herbs from the forest directly, and the effects might be better. Nowadays, the herbs undergo the process of preservation, so their nature may have been altered. Also, we do not know if the herbs have been affected by environmental pollution…This is my doubt. (RM3d)
Unpleasant experience Their concerns over the effectiveness of self-care activities underpinned by the philosophy of TCM were more apparent if the participants had had bad experiences with these activities previously. Some participants shared that their experiences with these self-care activities were not at all pleasant, and sometimes increased their symptom burden. The following comments were typical: There was a bitter taste in my mouth which was an obvious side effect after chemotherapy. [This was] a result of the heat in the body, so I had acne and felt nausea with poor appetite. At this stage, taking soup would be more appropriate, but some kinds of soup were really unpalatable. They were so bitter that I would rather not to take. I just took a sip of the soup, so how would it be helpful to me? (RM2d) Once, I bought a [over-the-counter] pack of dried herbs from a TCM shop as it was for reducing the oedema. I cooked and drank it, but the bitter taste [of the herbal tea] was terrible. I threw it up eventually. (RF4)
Discussion The present study provides an understanding of self-care activities underpinned by the TCM philosophy in Chinese cancer patients. Most of them had trust in Western cancer treatment, but they also worried that it may be potentially harmful. They were concerned that the toxicity of these conventional treatments might further disturb the yin-yang balance in the body in TCM terms. These findings chime with earlier studies that found there is a strong belief among Chinese cancer patients that conventional Western treatment increases the heat (i.e. yang) that damages the yin and the qi in the body, and so they used TCM therapies, such as herbal medicine and acupressure, as a complementary to prevent or reduce these harmful effects (Chen et al., 2008; Choe et al., 2006; Chui et al., 2005; Cohen et al., 2002; Cui et al., 2004; Simpson, 2003; So et al., 2012; Wong et al., 2001; Xu et al., 2006). Reasons for practising self-care underpinned by the TCM philosophy Following this line of thinking, the present study explored how the TCM philosophy has affected self-care by Chinese cancer patients, which has not yet been much explored. The findings of this study highlight the trend towards a pluralistic approach in self-care among cancer patients. They practised a range of self-care activities
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which were underpinned by the philosophy of TCM, including dietary modification, dietary supplement, physical therapies, and mind-body therapies, during the course of radiotherapy or chemotherapy. Unlike the previous studies, participants in the present study refrained from using TCM during their course of treatment lest it should interfere with their current treatment. They shared that their health care team discouraged them from using TCM during the course of treatment due to the potential for unknown interactions between their cancer treatment and TCM, so they resorted to practising self-care activities which were underpinned by the TCM philosophy to help themselves in regaining yinyang balance and promoting wellbeing in a holistic sense. Since these self-care activities have also been integrated into the daily life of healthy people in the Chinese culture, they presumed these activities are natural, with gentle effects, and would not affect the effects of their Western treatments. These findings are consistent with previous studies which demonstrate the cultural influence on self-care activities (Becker et al., 2004; Williams et al., 2010a, 2010b; 2006). Participants generally perform self-care activities supported by the TCM philosophy in the hope of regaining health through maintaining yin-yang balance or promoting the flow of qi in the body. The basic principle of maintaining yin-yang balance is to supplement deficiencies (National Center for Complementary and Alternative Medicine, 2010; Wong et al., 2001). Of these, dietary modification was in widespread use. In the TCM view, food can be classified with hot (yang) or cold (yin) properties, and should be taken according to the individual's health condition. Thus, participants tried to diagnose their own health conditions in TCM terms based on the signs and symptoms they recognised and then specifically prepared soup or dishes with food which has opposing properties to their current health condition. In addition to dietary modification, participants also performed other self-care activities, such as foot soaking and qigong, which were claimed to promote the qi circulation. This is in accordance with the TCM perspective that focuses on eradicating the root causes of health problems through a holistic approach (Konkimalla and Efferth, 2008; Schwartz, 2004; Wong et al., 2001). Mixed feelings towards self-care underpinned by the TCM philosophy The findings add clarity to our understanding of the experiences with self-care among cancer patients. Participants in this study revealed mixed feelings towards self-care activities underpinned by the TCM philosophy. On one hand, they believed that their self-care activities can help to strengthen their “origin” in terms of both physical and mental wellbeing that enhance their body resistance, safeguard the body from toxin accumulation and alleviate the discomforts and harms resulted from cancer treatment, but on the other hand, they also shared their concerns about the efficacy of these activities due to insufficient knowledge about TCM and their negative experiences with these activities. While much previous research reported positive experiences with self-care, and highlighted that self-care enables cancer patients to maintain a sense of control over their health (Kidd et al., 2008; Williams et al., 2010a, 2010b, 2006), the findings of this study reveal mixed feelings in the participants' experiences with self-care. Since the participants also acknowledged that the perceived benefits through practising self-care underpinned by the TCM philosophy which they shared were relatively subjective, they also have hesitations on whether they had actually experienced improvements in their health or whether these were just due to their beliefs. This might explain why some of them had the feelings of uncertainty, sense of powerlessness, and even guilt. Participants often learned self-care
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activities by word of mouth from friends, relatives or mass media, and then they had to decide if they would like to try these self-care activities intuitively. Since the reliability of information obtained from these sources was questionable, they then put the blame on themselves if there were any negative changes in their health condition. However, according to the philosophy of TCM, prescription to patients is highly individualized, tailored to the types of imbalances in the body (Molassiotis et al., 2009; Wong et al., 2001; Xu et al., 2006). The effects of self-care activities may vary across individuals, particularly if they have misdiagnosed their own health conditions. Although empirical studies and systematic review provide evidence on the effects of TCM modalities on symptom management during cancer treatment (Lotfi-Jam et al., 2008; Molassiotis et al., 2009), the effects of the self-care activities supported by the TCM philosophy suggested by participants in this study remained inconclusive as they have not been studied systematically. Examining the effects of these self-care activities on the physical and psychological wellbeing of cancer patients therefore is an important area for future research. Study limitations It has to be acknowledged that participants in our study were currently receiving cancer treatment. They were generally weak physically and felt fatigue easily, and so they were unable to endure long interviews. The average length of the interviews was about half an hour, ranging from 20 to 75 min, which may limit the depth of sharing in some of the interviews. Yet the findings of this exploratory study provide insights into the influence of TCM on self-care of Chinese cancer patients and serve as a basis for further inquiry. Further work is also necessary to explore how their decisions and experiences with self-care activities underpinned by TCM philosophy change along their illness trajectory. In addition, as the participants could not ascertain the effects of these self-care practices, it would be important to identify measurements in examining their effects so as to generate evidence of the efficacy of these self-care practices. The scope of further research might also be expanded to explore the influence of Chinese culture in a broader sense, including spiritual beliefs, on self-care. Conclusion This study is the first to explore how the philosophy of TCM influences self-care in Chinese cancer patients. The findings reveal that the self-care of Chinese cancer patients has been heavily influenced by the TCM philosophy, but also that those patients have mixed feelings towards these self-care activities. While they tried or continued with these self-care activities with confidence because the wisdom in the TCM philosophy has been passed on for thousands of years, they remained sceptical about the effects of these self-care activities. Findings of this study add depth to our understanding of patient-centered and culturally-relevant self-care activities in Chinese cancer patients, and emphasised that such understanding of their individual experiences with these self-care activities is important for clinical practice in various ways. First, the findings provide evidence that the philosophy of TCM is deeply embedded in the self-care of Chinese cancer patients. They practised these TCM-supported self-care activities to meet the health deviation self-care requisites in an attempt to improve their health conditions or maintain normality. Nurses have to be more proactive in exploring the unique self-care requisites of individual patients and their self-care activities as these may be related to how the patients interpret their illness experience and treatment. Simply advising
patients against these self-care activities might deter them from disclosing their care needs and affect their treatment compliance and general wellbeing (Becker et al., 2004; Lotfi-Jam et al., 2008). Second, findings show that the sources of information regarding these self-care activities vary. This might give rise to the mixed feelings towards these self-care activities as noted in the participants. The reliability and safety of these suggestions may be of concern, particularly in the strategy of self-prescribing in soup, herbal tea or diet. This is in line with Simpson's findings (2003) that family members of cancer patients were confused about the dietary advice relating to TCM. Therefore, nurses as patient advocates have to be prepared with relevant knowledge and skills for empowering the patients as self-care agency in a culturally-relevant manner (Simpson, 2003; Wang and Matthews, 2010). In Hong Kong, complementary and alternative therapies (CAM), including TCM, are part of the curriculum in nursing education (The Nursing Council of Hong Kong, 2013). Nurses could provide current evidence about the efficacy of various self-care activities to their patients, advise on the importance of adherence to conventional treatment, counter misconceptions in patients' understanding about their conditions, and empower them in self-care that improves their sense of control over their conditions. The health care team should also consider inviting qualified TCM practitioners into the team. Such a holistic approach would help to address the specific care needs and concerns of Chinese cancer patients in the cultural context. Third, the findings uncover that patients nowadays were more educated and thus eager to search for more information about different self-care activities, so they would also express concerns about the scientific evidence and quality of over-the-counter health products and herbs available in the market. This highlights the importance of government regulation of TCM products in informing patients the ingredients and reassuring them of their safety. Conflict of interest None declared. Acknowledgements The authors would like to thank all the participants for their support to the study. This study is supported by the departmental grant of the Nethersole School of Nursing, The Chinese University of Hong Kong. References Becker, G., Gates, R.J., Newsom, E., 2004. Self-care among chronically ill African Americans: culture, health disparities, and health insurance status. American Journal of Public Health 94 (12), 2066e2073. Census and Statistics Department, 2012. Hong Kong: the Facts. http://www.gov.hk/ en/about/abouthk/factsheets/docs/statistics.pdf. Chen, Z., Gu, K., Zheng, Y., Zheng, W., Lu, W., Shu, X.O., 2008. The use of complementary and alternative medicine among Chinese women with breast cancer. Journal of Alternative and Complementary Medicine 14 (8), 1049e1055. Choe, J.H., Tu, S.P., Lim, J.M., Burke, N.J., Acorda, E., Taylor, V.M., 2006. “Heat in their intestine”: colorectal cancer prevention beliefs among older Chinese Americans. Ethnicity and Disease 16 (1), 248e254. Chui, Y.Y., Donoghue, J., Chenoweth, L., 2005. Responses to advanced cancer: Chinese-Australians. Journal of Advanced Nursing 52 (5), 498e507. Cohen, I., Tagliaferri, M., Tripathy, D., 2002. Traditional Chinese medicine in the treatment of breast cancer. Seminars in Oncology 29 (6), 563e574. Cui, Y., Shu, X.O., Gao, Y., Wen, W., Ruan, Z.X., Jin, F., et al., 2004. Use of complementary and alternative medicine by Chinese women with breast cancer. Breast Cancer Research and Treatment 85 (3), 263e270. Department of Health, 2006. Supporting People with Long Term Conditions to Selfcare: a Guide to Developing Local Strategies and Good Practice. http://www.dh. gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_4130725. Hoffman, A.J., 2013. Enhancing self-efficacy for optimized patient outcomes through the theory of symptom self-management. Cancer Nursing 36 (1), E16eE26.
H.Y.L. Chan et al. / European Journal of Oncology Nursing 18 (2014) 445e451 Hopkins Hollis, A.S., 2010. Acupuncture as a treatment modality for the management of cancer pain: the state of the science. Oncology Nursing Forum 37 (5), E344eE348. Karnofsky, D.A., Buchenal, J.H., 1949. The clinical evaluation of chemotherapeutic agents in cancer. In: Macleod, C.M. (Ed.), Evaluation of Chemotherapeutic Agents. Columbia University Press, New York, pp. 191e205. Kidd, L., Kearney, N., O'Carroll, R., Hubbard, G., 2008. Experiences of self-care in patients with colorectal cancer: a longitudinal study. Journal of Advanced Nursing 64 (5), 469e477. Knobf, M.T., Sun, Y., 2005. A longitudinal study of symptoms and self-care activities in women treated with primary radiotherapy for breast cancer. Cancer Nursing 28 (3), 210e218. Konkimalla, V.B., Efferth, T., 2008. Evidence-based Chinese medicine for cancer therapy. Journal of Ethnopharmacology 116 (2), 207e210. Lee, S.Y., Loh, S.Y., Murray, L., 2011. Study protocol to investigate the efficacy of participation in Qi-Gong by breast cancer survivors. Journal of Cancer Therapy 2 (5), 715e724. Lincoln, Y.S., Guba, E.G., 1985. Naturalistic Inquiry. Sage Publications, Newbury Park. Lorig, K.R., Holman, H.R., 2003. Self-management education: history, definition, outcomes, and mechanisms. Annals of Behavioral Medicine 26 (1), 1e7. Lotfi-Jam, K., Carey, M., Jefford, M., Schofield, P., Charleson, C., Aranda, S., 2008. Nonpharmacologic strategies for managing common chemotherapy adverse effects: a systematic review. Journal of Clinical Oncology 26 (34), 5618e5629. Lou, Y., Yates, P., McCarthy, A., Wang, H.M., 2013a. Fatigue self-management: a survey of Chinese cancer patients undergoing chemotherapy. Journal of Clinical Nursing 22 (7e8), 1053e1065. Lou, Y., Yates, P., McCarthy, A., Wang, H.M., 2013b. Self-management of chemotherapy-related nausea and vomiting: a cross-sectional survey of Chinese cancer patients. Cancer Nursing. http://dx.doi.org/10.1097/ NCC.0b013e318291b6f5. Lu, A.P., Jia, H.W., Xiao, C., Lu, Q.P., 2004. Theory of traditional Chinese medicine and therapeutic method of diseases. World Journal of Gastroenterology 10 (13), 1854e1856. Molassiotis, A., Potrata, B., Cheng, K.K.F., 2009. A systematic review of the effectiveness of Chinese herbal medication in symptom management and improvement of quality of life in adult cancer patients. Complementary Therapies in Medicine 17 (2), 92e120. Morse, J.M., 1994. Designing funded qualitative research. In: Denzin, N.K., Lincoln, Y.S. (Eds.), Handbook of Qualitative Research. Sage Publications, Thousand Oaks, CA, pp. 220e235.
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Morse, J.M., 2000. Determining sample size. Qualitative Health Research 10 (1), 3e5. National Center for Complementary and Alternative Medicine, 2010. Traditional Chinese Medicine: an Introduction. http://nccam.nih.gov/health/whatiscam/ chinesemed.htm. Orem, D.E., 2001. Nursing: Concepts of Practice, sixth ed. Mosby, St. Louis, MO. Schwartz, A.B., 2004. Traditional Chinese medicine: ancient holistic healing. Home Health Care Management Practice 16 (6), 494e498. Simpson, P.B., 2003. Family beliefs about diet and traditional Chinese medicine for Hong Kong women with breast cancer. Oncology Nursing Forum 30 (5), 834e840. So, W.K.W., Choi, K.C., Chan, D.N.S., Shiu, A.T.Y., Ho, S.S.M., Chan, H.Y.L., et al., 2012. Colorectal cancer screening behaviour and associated factors among Chinese aged 50 and above in Hong Kong e a population-based survey. European Journal of Oncology Nursing 16 (4), 413e418. The Nursing Council of Hong Kong, 2013. A Reference Guide to the Syllabus of Subjects and Requirements for the Preparation of Registered Nurse (General) in the Hong Kong Special Administrative Region. http://www.nchk.org.hk/en/ core_competencies_and_reference_guides/registered_nurses_general/index. html. Wang, J., Matthews, J.T., 2010. Chronic disease self-management: views among older adults of Chinese descent. Geriatric Nursing 31 (2), 86e94. Williams, P.D., Balabagno, A.O., Manahan, L., Piamjariyakul, U., Ranallo, L., Laurente, C.M., et al., 2010a. Symptom monitoring and self-care practices among Filipino cancer patients. Cancer Nursing 33 (1), 37e46. Williams, P.D., Lopez, V., Chair, S.Y., Piamjariyakul, U., Wang, W., Hung, G.T.Y., et al., 2010b. Symptom monitoring and self-care practices among Oncology adults in China. Cancer Nursing 33 (3), 184e193. Williams, P.D., Piamjariyakul, U., Ducey, K., Badura, J., Boltz, K.D., Olberding, K., et al., 2006. Cancer treatment, symptom monitoring, and self-care in adults: pilot study. Cancer Nursing 29 (5), 347e355. Wong, R., Sagar, C.M., Sagar, S.M., 2001. Integration of Chinese medicine into supportive cancer care: a modern role for an ancient tradition. Cancer Treatment Reviews 27 (4), 235e246. World Health Organization, 1984. Health Education in Self-care: Possibilities and Limitations. http://apps.who.int/iris/handle/10665/70092?locale¼en. Xu, W., Towers, A.D., Li, P., Collet, J.P., 2006. Traditional Chinese medicine in cancer care: perspectives and experiences of patients and professionals in China. European Journal of Cancer Care 15 (4), 397e403.
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Exploring the influence of Traditional Chinese Medicine on self-care among Chinese cancer patients Helen Y.L. Chan a, *, Y.Y. Chui a, Carmen W.H. Chan a, Karis K.F. Cheng b, Ann T.Y. Shiu a, Winnie K.W. So a, Simone S.M. Ho a, Maggie M.F. Chan c a b c
The Nethersole School of Nursing, The Chinese University of Hong Kong, Shatin, Hong Kong, China Alice Lee Centre for Nursing Studies, National University of Singapore, Singapore Department of Clinical Oncology, Pamela Youde Nethersole Eastern Hospital, 3 Lok Man Road, Chai Wan, Hong Kong, China
a b s t r a c t Keywords: Self care Chinese Traditional Chinese Medicine Qualitative studies
Purpose: The aim of this study was to explore the influence of traditional Chinese medicine (TCM) on self-care among Chinese cancer patients. Methods: This was an exploratory qualitative study. A purposive sample of thirty cancer patients who were currently undergoing either chemotherapy or radiotherapy was interviewed. Qualitative content analysis was conducted for data analysis. Results: Two core categories were emerged from their accounts of experiences with practising TCMsupported self-care activities: perceived beneficial effects and concerns about undesirable effects. The perceived beneficial effects of these self-care activities were mainly stemmed from the traditional beliefs in TCM, which included: strengthening the “origin”, removing toxins, and mind-soothing. Concerns about undesirable effects of these self-care activities were raised due to lack of knowledge and unpleasant experience with these self-care activities. Conclusion: The findings revealed that the philosophy of TCM had been deeply integrated by Chinese cancer patients into their self-care. While Western medicine is the mainstream cancer treatment, Chinese cancer patients also practised various TCM-supported self-care activities. However, they were perplexed about the effects of these self-care activities. They could not ascertain whether the perceived benefits were just due to their own belief in the TCM philosophy, and their lack of knowledge in this aspect and unpleasant experience further confused them. Nurses have to be proactive in identifying the unique health-deviation self-care requisites of their clients in a culturally sensitive manner, explore how their self-care experience affects their wellbeing and treatment compliance, and be prepared to clarify misconceptions about their conditions and progress. © 2014 Elsevier Ltd. All rights reserved.
Introduction Self-care is defined as learned behaviours initiated and performed by an individual personally in response to perceived health changes with an intention to promote health and well-being, prevent disease or health deterioration, and care for long-term conditions (Department of Health, 2006; Orem, 2001; World Health Organization, 1984). Such acts are known as health deviation selfcare requisites resulting from injury, disease and its treatment,
* Corresponding author. The Nethersole School of Nursing, The Chinese University of Hong Kong, 7/F. Esther Lee Building, Shatin, New Territories, Hong Kong, China. Tel.: þ852 3943 8099; fax: þ852 2603 5269. E-mail address: [email protected] (H.Y.L. Chan). http://dx.doi.org/10.1016/j.ejon.2014.05.005 1462-3889/© 2014 Elsevier Ltd. All rights reserved.
according to Orem's theory of self-care (Orem, 2001). Although the effectiveness of cancer treatment has been greatly improved in recent decades and become the dominant approach, it has been widely reported that cancer patients practised different self-care activities as complementary means to manage the physical and emotional impacts of cancer and its treatment (Kidd et al., 2008; Lou et al., 2013a). Given that these self-care activities might have significant impacts on patients' health and wellbeing, treatment effects and compliance, as well as healthcare utilization, the concept of self-care has been examined extensively among cancer patients. Studies found that patients practised self-care to alleviate distress, such as fatigue, nausea and vomiting, and to learn to live with the effects of cancer and its treatment (Lou et al., 2013b; Williams et al., 2010a, 2010b, 2006). Apart from the substantial evidence of the beneficial effects
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of various self-care activities on clinical outcomes (Hoffman, 2013; Lou et al., 2013a, 2013b; Williams et al., 2010a, 2010b, 2006), literature also suggests the importance of self-care in psychological wellbeing. Knobf and Sun (2005) found that engaging in self-care activities is an integral component of the coping process among cancer patients, based on the self-regulation theory. Kidd et al. (2008) also noted that active participation in self-care activities enables cancer patients to preserve a sense of normality and self-identity. Therefore, cancer patients are being increasingly encouraged to take a proactive role in self-care (Lorig and Holman, 2003). Williams and associates had compared the cross-cultural differences in selfcare activities among cancer patients in the Midwestern United States, Philippines and China and they found that many self-care activities stemmed from folk remedies within the cultural context (Williams et al., 2010a, 2010b, 2006). Hence, self-care appears to have both medical and social connotations, and thus the practice of selfcare has to be understood in the personal and cultural context. However, recent studies on self-care have been largely quantitative, limited to the efficacy of self-care activities and among patients in western countries. Little work has been done to explore the nature of the self-care activities in Chinese cancer patients and their experiences with their self-care activities. Traditional Chinese Medicine (TCM), which is generally delivered by qualified practitioners, has been practised for thousands of years in the Chinese culture. TCM comprises different modalities, including herbal remedies, dietary therapy, acupuncture, Chinese massage (tuina), moxibustion, cupping, and mind-body therapies such as qi gong and tai chi (National Center for Complementary and Alternative Medicine, 2010). Despite their different natures, the guiding principle of all these practices is to restore the yin (陰)-yang (陽) balance and promote the circulation of the qi (氣) in the body to enhance immunity and reduce toxicities (Wong et al., 2001; Xu et al., 2006). Yin and yang are two opposite counteracting forces in the body and qi is a vital energy or force which circulates through meridians in the body (Konkimalla and Efferth, 2008; Lu et al., 2004; Schwartz, 2004). From the TCM perspective, cancer is understood as a result of yin-yang imbalance and qi stagnation in the body, rather than a stand-alone diagnosis (Cohen et al., 2002; Schwartz, 2004; Wong et al., 2001; Xu et al., 2006). In addition, chemotherapeutic agents further act as heat toxins that damage the yin and the qi in the body, thus contributing to compromised immunity and cancer recurrence (Wong et al., 2001; Xu et al., 2006). This may explain why several studies have shown that the use of TCM is widespread among Chinese cancer patients as an adjuvant to Western medicine (Chen et al., 2008; Choe et al., 2006; Chui et al., 2005; Cohen et al., 2002; Cui et al., 2004; Simpson, 2003; So et al., 2012; Wong et al., 2001; Xu et al., 2006). Different TCM modalities are used to harmonize the balance and enhance the flow of the qi in the body with the intention of increasing immunity and preventing metastasis (Cohen et al., 2002; Konkimalla and Efferth, 2008; Lu et al., 2004; Wong et al., 2001; Xu et al., 2006). In the Chinese culture, the philosophy of TCM is woven into every aspect of daily life for health maintenance, because it is believed that health is achieved through continual efforts to maintain yin-yang balance and the smooth circulation of qi (Schwartz, 2004). With a long tradition in the culture, some common health management strategies supported by the philosophy of the TCM have been passed on through generations. Hence, most of the Chinese people have some knowledge of TCM, even though they have not received any proper training (Simpson, 2003). It is not surprising to find that Chinese people often interpret their health conditions in TCM terms, based on their understanding of it, and believe in their ability to manage their health problems with their knowledge and skills through self-care activities. However, much previous research has mainly focused on examining the effects of discrete TCM modalities,
such as herbal medication and acupuncture, on symptom management in cancer patients (Hopkins Hollis, 2010; Lee et al., 2011; Molassiotis et al., 2009). Little is known about how the philosophy of TCM has impacted the self-care of Chinese cancer patients. This study would be valuable in complementing to existing literature on patient-centered and culturally-focused self-care. Aim Given that TCM may play an important role in shaping the selfcare activities of Chinese cancer patients, the purpose of this study was to explore how the philosophy of TCM has influenced self-care among Chinese cancer patients in Hong Kong. The specific objectives of this exploratory qualitative study are (1) to understand the reasons why Chinese cancer patients practise self-care activities underpinned by the TCM philosophy, and (2) to understand their experiences and perceptions of these self-care activities. Methods Setting and participants This study was conducted at the oncology outpatient department of an acute hospital in Hong Kong. Purposive sampling was used to recruit cancer patients who i) were aged 18 years or above; ii) were able to speak Cantonese; iii) were currently receiving either chemotherapy or radiotherapy; iv) had a score of Karnofsky Performance Status (KPS) 60 (Karnofsky and Buchenal, 1949) and; v) had experience of, or were currently practising, any self-care activities which are related to the TCM philosophy. As this is an exploratory study, it was planned to recruit 15 participants for each treatment group (chemotherapy and radiotherapy), with both genders equally represented. This sample size was determined based on the nature of the study topic, scope of the study, quality of data and study design (Morse, 2000). Data collection Permission for the study was obtained from the University Survey and Behavioural Ethics Committee and the Cluster Research Ethics Committee. This study was undertaken by a research team with seven nurse researchers who were experienced in qualitative research and oncology care, and one experienced nurse who was currently working in an administrative role in the oncology department. All of them supported the study in different capacities, from the study conceptualization to data analysis. Prior to data collection, participants were given information about the purpose of the study and they were informed of their rights to withdraw from the study at any time without any adverse consequences to their treatment. After written informed consent was obtained, semi-structured interviews were conducted individually with the participants. An interview schedule was prepared by four researchers (YC, CC, KC & AS). All interviews were conducted by a trained research nurse, who had been involved in many oncology research studies, to ensure the consistency of the data collection. Interviews were conducted in a private room at the oncology outpatient department using the interview schedule (Table 1). Participants were asked in the interviews to share their experiences and perceptions of self-care activities they had practised which are related to the TCM philosophy. Data analysis Qualitative content analysis was used to describe the phenomena of interest in a systematic and objective way (Morse, 1994). All audiotaped interviews were transcribed verbatim and analysed by
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two researchers (HC & AS). Initially, they read the interview transcripts individually to gain an overall picture of the data, and identified significant statements and phrases in the data. They undertook coding line-by-line independently. Codes related to similar entities were then clustered into subcategories and condensed into categories through abstraction. Throughout the data analysis process, they had meetings to achieve consensus on the emerging codes and categories. To enhance the rigour of the study, the following strategies were employed (Lincoln and Guba, 1985). The interview transcripts were checked for accuracy to ensure a complete account of participants' responses. This reduced the risk of selective filtering of data through recall or summation. The credibility of the inquiry was ensured through investigator triangulation and peer debriefing in the data analysis process to prevent biased decisions and idiosyncratic interpretation of data. Peer debriefing was performed by holding meetings with all other researchers in the team.
Table 2 Participants' demographic characteristics (N ¼ 30).
Results Participants' characteristics Thirty participants were interviewed, half of them female. Their mean age was 53.6 years, ranging from 28 to 76 years. The majority of the participants were married with children and had received secondary education or above. The distribution of monthly household income of the participants was comparable to the relevant distribution in 2010 in Hong Kong (Census and Statistics Department, 2012). Their primary sites of cancer varied, including breast, prostate, stomach, ovarian, colorectal, lung, kidney, nasopharyngeal and vocal cord. About half of them were at stage 1 or 2. They had known about their cancer diagnosis for a mean period of 22 months (SD 31.2 months). Regarding the cancer treatment, seven participants received chemotherapy only, five received radiotherapy only, and the remaining 18 participants underwent a combination of chemotherapy and radiotherapy. Tables 2 and 3 show the participants' demographic and clinical characteristics respectively.
Strengthening the “origin” Many participants worried that cancer is traumatic to the “origin” in the body, in particular the qi. Therefore, they prepared soups or dishes with specific ingredients in the belief that these can Table 1 Interview schedule. 1. Could you describe the self-care activities/strategies you have used during cancer treatment which are supported by the philosophy of Traditional Chinese Medicine? 2. How did you learn these self-care activities/strategies? 3. Could you share your experiences with these self-care activities?
Variables
Frequencya
Age (years) Age groupc 21e30 31e40 41e50 51e60 >60 Gender Female Male Marital status Married/Cohabitated Divorced/Separated Single Education level Primary school Secondary school Tertiary education Working status Full-time working Part-time working Unemployed Average household income (HKD) 10 000 10 001e20 000 20 001e30 000 30 001 Unknown
54.3 ± 11.8b 1 2 9 9 8 15 15 24 3 3 3 17 10 14 1 15 5 9 5 7 4
Abbreviation: HKD, Hong Kong Dollars. a Data are presented in terms of frequency, unless otherwise specified. b Values given are mean ± SD. c one informant refused to disclose his age.
help to replenish the qi for the goal of health restoration in the TCM view: I often cooked the kinds of soup which are fortifying to health…I will cook American ginseng soup and stewed black-boned chicken with Korean ginseng as these ingredients can replenish the qi. Since I had the problem of severe bleeding during defecation before, and also I lost a lot of blood during the
Perceived beneficial effects From the participants' accounts of their perceptions of these self-care activities, two core categories were emerged: perceived beneficial effects and concerns about undesirable effects. Table 4 presents the core categories and subcategories. The participants practised self-care activities underpinned by the TCM philosophy, as they believed these can help to enhance their body's resistance by strengthening the “origin” (固本培元) in their body, prevent cancer recurrence and alleviate the discomforts resulting from the disease and its treatment by removing toxins (排 毒) in their bodies, which were believed to be the root cause of cancer, and optimise their psychological wellbeing by soothing their mind.
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Table 3 Participants' clinical characteristics (N ¼ 30). Variables Cancer diagnosis Breast cancer Stomach cancer Lymphoma Lung cancer Nasopharyngeal carcinoma Colorectal cancer Gynaecological cancer Prostate cancer Kidney cancer Vocal cord cancer Stage I II III IV Unknown Mean period of cancer diagnosis ± SD (months) Treatment plan Chemotherapy Radiotherapy Combined chemotherapy & radiotherapy a b
Frequencya 9 4 4 3 2 2 3 1 1 1 6 8 4 5 7 22.1 ± 31.2b 7 5 18
Data are presented in terms of frequency, unless otherwise specified. Values given are mean ± SD.
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Table 4 Participants' perceptions towards TCM-supported self-care activities. Core category
Subcategory
Perceived beneficial effects
A A A A A
Concerns about undesirable effects
Strengthening the “origin” Removing toxins Mind-soothing Lack of knowledge Unpleasant experience
Our diet should not be too “supplementing”, otherwise the cancerous cells will be well fed and develop rapidly. If you are well nourished, the cancerous cells will absorb the nutrients faster than your normal cells. If you have only bland food, like vegetarian, these cancerous cells will starve to death. (RF2)
Mind-soothing operation, I always feel faint. All these damage my qi. When the qi is restored, my energy would be restored. (CF5) For similar purposes, some participants also took over-thecounter Chinese herbal products prepared in the format of tea or capsules in the hope of increasing their inner resistance. My friends suggested me taking this Yunzi-derived product. Yunzi is mainly for enhancing the immunity and fortifying the health. These cancer treatments are harmful to the body…The chemotherapeutic agents indeed are toxic and that's why I have hair loss and my fingers are bruised. In TCM terms, they are harmful to kidney and spleen, so it is necessary to recuperate the body. (RF7)
Removing toxins Most of the participants generally believed that the cause of cancer was the accumulation of toxins, which were the results of excessive heat in the body in TCM terms. The cancer treatment itself would further lead to excessive heat (i.e. yang) in the body despite its intended effects. Hence they hoped to eliminate the toxins in their bodies through diet modification as well: I take the Lingzhi (Ganoderma) powder for clearing heat (清熱) in the body. Also, I added Chinese yam and Wolfberries into soup and cooked chrysanthemum tea. Perhaps the heat was dispersed after taking these I feel more comfortable after taking these. (CM7d) I cooked soup once every two days and added corn, pear, Chinese pearl barley or fish maws into the soup. Radiotherapy made me dehydrated because the treatment is of the nature of dryness and heat. The pain from sore throat hinders me from drinking water. The effects of these kinds of soups are moistening and yin-enriching (滋陰). (RF2) I cooked soup with Burdock. The soup was clear and sweet. It could remove heat and toxins in my body. It was really good for my bowel…it helped to relieve constipation. (RF4) Another participant suggested another type of self-care activity which could promote blood circulation and the flow of the qi through meridians for detoxification: Every night, I soaked my feet in hot water with ginger…It was said that this method can lead to perspiration and thus remove toxins. As we know, ginger is of hot nature [in TCM concept], so it can promote your blood and the qi circulation. (RF1) In addition, a number of participants tended to avoid certain kinds of food that are traditionally considered as toxic to the body in TCM, such as beef, poultry, seafood, lamb, deep-fried food or cooked food kept overnight. As many kinds of food have to be avoided, several participants even changed to a bland diet or became vegetarians. One participant explained his diet change in such way,
Health was perceived by participants in a holistic sense, and thus some of their self-care activities pertained to nurturing their mind. They practised tai chi or qigong as they learnt from mass media and friends that these practices are advocated in TCM for maintaining a peaceful mind. In addition, they considered the slow bodily movements and coordinated breathing in these practices could help to improve their health: I was told that qigong can help to promote blood circulation. I took it as exercise. I used it to help me relax and distract me from negative emotions…I just do not want to think too much. (CLM1d) I am not sure whether my health has really been improved after I have practised tai chi, but at least I found myself relieved, that means psychologically better. Now, I persevere with my practices. I take it every day …. It becomes my spiritual sustenance for self-help. This is better than taking medication, much better. (RM3d)
Concerns about undesirable effects While nearly all participants shared that they felt better after practising self-care activities based on the TCM philosophy, some of them also questioned if these effects were just due to their preconceptions and expectations. The feeling of uncertainty was particularly apparent among those who expressed concerns about undesirable effects of practising these self-care activities due to lack of knowledge and unpleasant experience in their sharing. Lack of knowledge Several participants were aware that they did not have sufficient knowledge about their self-care activities. Though they understood that these activities had been practised for a long time in the Chinese culture or explained by TCM theories, they worried that they lack the knowledge on how to implement them. Some of them also questioned if these activities had been scientifically proven with evidence. One participant raised the concern, I do believe that boiled water with red dates will work in anemic condition, but to what extent? I do not know how much should I take? How long should I take? What should be the concentration? There is no information. (CF1) Another participant also questioned that, In the previous time, my platelet count and white blood cells were low. The physician suggested me to take supplements… something like milk powder with additional nutrients. I worried that it might nourish the cancerous cells, though this is not of concern from the perspective of Western medicine. Instead, I took water boiled with peanut red skin or pig liver. But, I don't know how long it would take before we would see the effects. (CLM3d)
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Likewise, some participants also wanted to clarify the ingredients of the TCM-related health products they got over the counter or the quality of the herbs they had been using in self-care activities: There are many over-the-counter health products which claim to be developed based on TCM formulae, but we cannot be sure of the amount of the ingredient, also whether the manufacturer has mixed other ingredients into these products. (CF6) I know some herbs are useful in managing health problems, but I also have some reservations about their effects. In the past, people collected fresh herbs from the forest directly, and the effects might be better. Nowadays, the herbs undergo the process of preservation, so their nature may have been altered. Also, we do not know if the herbs have been affected by environmental pollution…This is my doubt. (RM3d)
Unpleasant experience Their concerns over the effectiveness of self-care activities underpinned by the philosophy of TCM were more apparent if the participants had had bad experiences with these activities previously. Some participants shared that their experiences with these self-care activities were not at all pleasant, and sometimes increased their symptom burden. The following comments were typical: There was a bitter taste in my mouth which was an obvious side effect after chemotherapy. [This was] a result of the heat in the body, so I had acne and felt nausea with poor appetite. At this stage, taking soup would be more appropriate, but some kinds of soup were really unpalatable. They were so bitter that I would rather not to take. I just took a sip of the soup, so how would it be helpful to me? (RM2d) Once, I bought a [over-the-counter] pack of dried herbs from a TCM shop as it was for reducing the oedema. I cooked and drank it, but the bitter taste [of the herbal tea] was terrible. I threw it up eventually. (RF4)
Discussion The present study provides an understanding of self-care activities underpinned by the TCM philosophy in Chinese cancer patients. Most of them had trust in Western cancer treatment, but they also worried that it may be potentially harmful. They were concerned that the toxicity of these conventional treatments might further disturb the yin-yang balance in the body in TCM terms. These findings chime with earlier studies that found there is a strong belief among Chinese cancer patients that conventional Western treatment increases the heat (i.e. yang) that damages the yin and the qi in the body, and so they used TCM therapies, such as herbal medicine and acupressure, as a complementary to prevent or reduce these harmful effects (Chen et al., 2008; Choe et al., 2006; Chui et al., 2005; Cohen et al., 2002; Cui et al., 2004; Simpson, 2003; So et al., 2012; Wong et al., 2001; Xu et al., 2006). Reasons for practising self-care underpinned by the TCM philosophy Following this line of thinking, the present study explored how the TCM philosophy has affected self-care by Chinese cancer patients, which has not yet been much explored. The findings of this study highlight the trend towards a pluralistic approach in self-care among cancer patients. They practised a range of self-care activities
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which were underpinned by the philosophy of TCM, including dietary modification, dietary supplement, physical therapies, and mind-body therapies, during the course of radiotherapy or chemotherapy. Unlike the previous studies, participants in the present study refrained from using TCM during their course of treatment lest it should interfere with their current treatment. They shared that their health care team discouraged them from using TCM during the course of treatment due to the potential for unknown interactions between their cancer treatment and TCM, so they resorted to practising self-care activities which were underpinned by the TCM philosophy to help themselves in regaining yinyang balance and promoting wellbeing in a holistic sense. Since these self-care activities have also been integrated into the daily life of healthy people in the Chinese culture, they presumed these activities are natural, with gentle effects, and would not affect the effects of their Western treatments. These findings are consistent with previous studies which demonstrate the cultural influence on self-care activities (Becker et al., 2004; Williams et al., 2010a, 2010b; 2006). Participants generally perform self-care activities supported by the TCM philosophy in the hope of regaining health through maintaining yin-yang balance or promoting the flow of qi in the body. The basic principle of maintaining yin-yang balance is to supplement deficiencies (National Center for Complementary and Alternative Medicine, 2010; Wong et al., 2001). Of these, dietary modification was in widespread use. In the TCM view, food can be classified with hot (yang) or cold (yin) properties, and should be taken according to the individual's health condition. Thus, participants tried to diagnose their own health conditions in TCM terms based on the signs and symptoms they recognised and then specifically prepared soup or dishes with food which has opposing properties to their current health condition. In addition to dietary modification, participants also performed other self-care activities, such as foot soaking and qigong, which were claimed to promote the qi circulation. This is in accordance with the TCM perspective that focuses on eradicating the root causes of health problems through a holistic approach (Konkimalla and Efferth, 2008; Schwartz, 2004; Wong et al., 2001). Mixed feelings towards self-care underpinned by the TCM philosophy The findings add clarity to our understanding of the experiences with self-care among cancer patients. Participants in this study revealed mixed feelings towards self-care activities underpinned by the TCM philosophy. On one hand, they believed that their self-care activities can help to strengthen their “origin” in terms of both physical and mental wellbeing that enhance their body resistance, safeguard the body from toxin accumulation and alleviate the discomforts and harms resulted from cancer treatment, but on the other hand, they also shared their concerns about the efficacy of these activities due to insufficient knowledge about TCM and their negative experiences with these activities. While much previous research reported positive experiences with self-care, and highlighted that self-care enables cancer patients to maintain a sense of control over their health (Kidd et al., 2008; Williams et al., 2010a, 2010b, 2006), the findings of this study reveal mixed feelings in the participants' experiences with self-care. Since the participants also acknowledged that the perceived benefits through practising self-care underpinned by the TCM philosophy which they shared were relatively subjective, they also have hesitations on whether they had actually experienced improvements in their health or whether these were just due to their beliefs. This might explain why some of them had the feelings of uncertainty, sense of powerlessness, and even guilt. Participants often learned self-care
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activities by word of mouth from friends, relatives or mass media, and then they had to decide if they would like to try these self-care activities intuitively. Since the reliability of information obtained from these sources was questionable, they then put the blame on themselves if there were any negative changes in their health condition. However, according to the philosophy of TCM, prescription to patients is highly individualized, tailored to the types of imbalances in the body (Molassiotis et al., 2009; Wong et al., 2001; Xu et al., 2006). The effects of self-care activities may vary across individuals, particularly if they have misdiagnosed their own health conditions. Although empirical studies and systematic review provide evidence on the effects of TCM modalities on symptom management during cancer treatment (Lotfi-Jam et al., 2008; Molassiotis et al., 2009), the effects of the self-care activities supported by the TCM philosophy suggested by participants in this study remained inconclusive as they have not been studied systematically. Examining the effects of these self-care activities on the physical and psychological wellbeing of cancer patients therefore is an important area for future research. Study limitations It has to be acknowledged that participants in our study were currently receiving cancer treatment. They were generally weak physically and felt fatigue easily, and so they were unable to endure long interviews. The average length of the interviews was about half an hour, ranging from 20 to 75 min, which may limit the depth of sharing in some of the interviews. Yet the findings of this exploratory study provide insights into the influence of TCM on self-care of Chinese cancer patients and serve as a basis for further inquiry. Further work is also necessary to explore how their decisions and experiences with self-care activities underpinned by TCM philosophy change along their illness trajectory. In addition, as the participants could not ascertain the effects of these self-care practices, it would be important to identify measurements in examining their effects so as to generate evidence of the efficacy of these self-care practices. The scope of further research might also be expanded to explore the influence of Chinese culture in a broader sense, including spiritual beliefs, on self-care. Conclusion This study is the first to explore how the philosophy of TCM influences self-care in Chinese cancer patients. The findings reveal that the self-care of Chinese cancer patients has been heavily influenced by the TCM philosophy, but also that those patients have mixed feelings towards these self-care activities. While they tried or continued with these self-care activities with confidence because the wisdom in the TCM philosophy has been passed on for thousands of years, they remained sceptical about the effects of these self-care activities. Findings of this study add depth to our understanding of patient-centered and culturally-relevant self-care activities in Chinese cancer patients, and emphasised that such understanding of their individual experiences with these self-care activities is important for clinical practice in various ways. First, the findings provide evidence that the philosophy of TCM is deeply embedded in the self-care of Chinese cancer patients. They practised these TCM-supported self-care activities to meet the health deviation self-care requisites in an attempt to improve their health conditions or maintain normality. Nurses have to be more proactive in exploring the unique self-care requisites of individual patients and their self-care activities as these may be related to how the patients interpret their illness experience and treatment. Simply advising
patients against these self-care activities might deter them from disclosing their care needs and affect their treatment compliance and general wellbeing (Becker et al., 2004; Lotfi-Jam et al., 2008). Second, findings show that the sources of information regarding these self-care activities vary. This might give rise to the mixed feelings towards these self-care activities as noted in the participants. The reliability and safety of these suggestions may be of concern, particularly in the strategy of self-prescribing in soup, herbal tea or diet. This is in line with Simpson's findings (2003) that family members of cancer patients were confused about the dietary advice relating to TCM. Therefore, nurses as patient advocates have to be prepared with relevant knowledge and skills for empowering the patients as self-care agency in a culturally-relevant manner (Simpson, 2003; Wang and Matthews, 2010). In Hong Kong, complementary and alternative therapies (CAM), including TCM, are part of the curriculum in nursing education (The Nursing Council of Hong Kong, 2013). Nurses could provide current evidence about the efficacy of various self-care activities to their patients, advise on the importance of adherence to conventional treatment, counter misconceptions in patients' understanding about their conditions, and empower them in self-care that improves their sense of control over their conditions. The health care team should also consider inviting qualified TCM practitioners into the team. Such a holistic approach would help to address the specific care needs and concerns of Chinese cancer patients in the cultural context. Third, the findings uncover that patients nowadays were more educated and thus eager to search for more information about different self-care activities, so they would also express concerns about the scientific evidence and quality of over-the-counter health products and herbs available in the market. This highlights the importance of government regulation of TCM products in informing patients the ingredients and reassuring them of their safety. Conflict of interest None declared. Acknowledgements The authors would like to thank all the participants for their support to the study. This study is supported by the departmental grant of the Nethersole School of Nursing, The Chinese University of Hong Kong. References Becker, G., Gates, R.J., Newsom, E., 2004. Self-care among chronically ill African Americans: culture, health disparities, and health insurance status. American Journal of Public Health 94 (12), 2066e2073. Census and Statistics Department, 2012. Hong Kong: the Facts. http://www.gov.hk/ en/about/abouthk/factsheets/docs/statistics.pdf. Chen, Z., Gu, K., Zheng, Y., Zheng, W., Lu, W., Shu, X.O., 2008. The use of complementary and alternative medicine among Chinese women with breast cancer. Journal of Alternative and Complementary Medicine 14 (8), 1049e1055. Choe, J.H., Tu, S.P., Lim, J.M., Burke, N.J., Acorda, E., Taylor, V.M., 2006. “Heat in their intestine”: colorectal cancer prevention beliefs among older Chinese Americans. Ethnicity and Disease 16 (1), 248e254. Chui, Y.Y., Donoghue, J., Chenoweth, L., 2005. Responses to advanced cancer: Chinese-Australians. Journal of Advanced Nursing 52 (5), 498e507. Cohen, I., Tagliaferri, M., Tripathy, D., 2002. Traditional Chinese medicine in the treatment of breast cancer. Seminars in Oncology 29 (6), 563e574. Cui, Y., Shu, X.O., Gao, Y., Wen, W., Ruan, Z.X., Jin, F., et al., 2004. Use of complementary and alternative medicine by Chinese women with breast cancer. Breast Cancer Research and Treatment 85 (3), 263e270. Department of Health, 2006. Supporting People with Long Term Conditions to Selfcare: a Guide to Developing Local Strategies and Good Practice. http://www.dh. gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_4130725. Hoffman, A.J., 2013. Enhancing self-efficacy for optimized patient outcomes through the theory of symptom self-management. Cancer Nursing 36 (1), E16eE26.
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