BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from

A qualitative research on the use of traditional Korean medicine (TKM) in patients with chronic fatigue

ForJournal: peerBMJ Open review only Manuscript ID: bmjopen-2014-006178

Article Type: Research

Date Submitted by the Author: 13-Mar-2015

Complete List of Authors: Son, Haeng-Mi; Department of Nursing, University of Park, Eun Young; College of Nursing, Gachon University Kim, Duck Hee; Department of Nursing, Kim, Eunjeong; Department of Nursing, Daedong College Shin, Mi-Suk; Department of nursing, Daejeon University Kim, Tae-Hun; Korean Medicine Clinical Trial Center, Korean Medicine Hospital,

Primary Subject Complementary medicine Heading:

Secondary Subject Heading: Qualitative research

COMPLEMENTARY MEDICINE, QUALITATIVE RESEARCH, Adult palliative Keywords: care < PALLIATIVE CARE

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For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 1 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 Standards for Reporting Qualitative Research (SRQR) checklist 5 6 7 No Topic Item 8 S1 Title P1 9 10 S2 Abstract P2 11 S3 Problem formulation P5 12 S4 Purpose or research question P5 13 14 S5 Qualitative approach and P6 15 For peerresearch paradigmreview only 16 17 S6 Researcher characteristics and P7 18 reflexivity 19 20 S7 Context P6 21 S8 Sampling strategy P6 22 S9 Ethical issues pertaining to P6-7 23 24 human subjects 25 S10 Data collection methods P6 26 27 S11 Data collection instruments P6 28 and technologies 29 S12 Units of study P8, P23 30 31 S13 Data processing P6 32 S14 Data analysis P6 33 34 S15 Techniques to enhance P7 35 trustworthiness http://bmjopen.bmj.com/ 36 37 S16 Synthesis and interpretation P8-P17 38 S17 Links to empirical data P8-P17 39 S18 Integration with prior work, P18 40 41 implications, transferability, 42 and contribution(s) to the field

43 on October 2, 2021 by guest. Protected copyright. 44 S19 Limitations P19 45 S20 Conflicts of interest P20 46 47 S21 Funding P20 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 2 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 MS to BMJ Open 6 7 8 9 10 A qualitative research on the use of traditional Korean medicine (TKM) in patients with chronic 11 12 fatigue 13 14 15 For peer review only 16 Haeng-Mi Son1, Park, Eun Young2, Kim, Duck Hee3, Kim, Eunjeong4, Mi-Suk Shin5, Tae-Hun Kim6,* 17 18

19 20 1 21 Department of Nursing, , Ulsan, Korea 22 23 2 College of Nursing, Gachon University, Incheon, Korea 24 25 3 Department of Nursing, Woosuk University, Wanju, Korea 26 27 4 Department of Nursing, Daedong College, , Korea 28 29 5 30 Department of nursing, Daejeon University, Daejeon, Korea 31 6 32 Korean Medicine Clinical Trial Center, Korean Medicine Hospital, Kyung Hee University, Seoul, 33 34 35 http://bmjopen.bmj.com/ 36 37 38 *Corresponding author 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 3 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Abstract 6 7 Objectives 8 9 10 To explore the chronic fatigue patient’s perception and experience of traditional Korean 11 12 medicine (TKM) and their motivation for choosing TKM 13 14 Design 15 For peer review only 16 Qualitative one-on-one, in-depth interview study 17 18 19 Setting 20 21 Primary TKM hospitals in Seoul, Inchon and Daejeon, South Korea 22 23 Results 24 25 Fifteen chronic fatigue patents were interviewed in this study. Patients with chronic 26 27 fatigue experienced physical and psychological symptoms that resulted in severe 28 29 30 difficulties associated with routine daily activities. The motivation for choosing TKM 31 32 practice was mainly dissatisfaction with conventional medicine and previous positive 33 34 experiences with TKM. After TKM treatments, patients found that TKM practitioners 35 http://bmjopen.bmj.com/ 36 considered fatigue to be a treatable illness and patients felt comfortable with the 37 38 doctor-patient relationship in TKM practice. 39 40 41 Conclusion 42

43 Health care providers need to be concerned with the symptoms of chronic fatigue to a on October 2, 2021 by guest. Protected copyright. 44 45 degree that is in line with the patient’s own perceptions; TKM might present a possible 46 47 solution that can redeem conventional medicine and is an approach that has 48 49 50 considerable influence on Korean patients. 51 52 Keywords 53 54 Chronic fatigue, traditional Korean medicine, TKM, qualitative research 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 4 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Article summary 6 7 Strengths and limitations of this study 8 9 10 Traditional Korean medicine (TKM) is a unique medical system which shares identical origin, 11 12 interventions and medical theory with traditional Chinese medicine but has been developed and 13 14 practiced in a specific context of Korea. 15 For peer review only 16 This is the first qualitative research on the perception and experience of patients with chronic fatigue 17 18 about TKM. This study results suggest detailed insight into the patient's attitude to usage of TKM 19 20 21 treatment. Practitioners are able to use the findings for understanding behaviour of the patients with 22 23 chronic fatigue for seeking complementary and alternative treatments including TKM for health 24 25 promotion. 26 27 For our one-on-one, in-depth interview, we recruited interviewees through the referral from TKM 28 29 30 physicians and snowball sampling method which potentially affected the characteristics of the 31 32 interviewees who might be positively biased toward TKM treatments. 33 34 From this study, we found that chronic fatigue patients believed that their symptoms were related to 35 http://bmjopen.bmj.com/ 36 normal aging and personal characteristics as well as physical illness. Dissatisfaction with conventional 37 38 medicinal treatment was the motivation for choosing TKM clinics. Patients had tendency to 39 40 41 participate in the TKM treatment willingly even though it demands endurance of long-term and 42

43 sometimes intolerable treatment process. on October 2, 2021 by guest. Protected copyright. 44 45 The limitation is that study findings can be only applied to Korean population who uses or at least 46 47 familiar with TKM. 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 5 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Introduction 6 7 8 9 10 Fatigue is generally accepted to be a combination of symptoms that are an acute 11 12 response to physical or mental exertion and is characterised by recovery after rest. 13 14 When fatigue symptoms continue for more than six months, it is defined as a chronic 15 For peer review only 16 condition1. Various types of illnesses are associated with fatigue2, however, many 17 18 patients who complain of severe disability in daily life have fatigue symptoms that 19 20 3 21 cannot be explained by pathological causes . Chronic fatigue syndrome, a condition that 22 23 is defined by a period of more than six months of continuous fatigue without a specific 24 25 underlying disease, is prevalent among the general population in Korea: the prevalence 26 27 is estimated to be 0.6 to 2.0 %, which is quite similar to that found in Western societies 28 29 4 30 (0.5 to 2.5 %) . 31 32 33 34 Traditional Korean medicine (TKM) is a medical practice system included within the 35 http://bmjopen.bmj.com/ 36 orthodox medicine category in Korea. TKM interventions consist of herbal medicine, 37 38 acupuncture, moxibustion, and cupping therapies, similar to those of traditional Chinese 39 40 41 medicine; however, TKM has developed unique medical theories and practice 42

43 manoeuvres that have been influenced by medical practices in other East Asian on October 2, 2021 by guest. Protected copyright. 44 45 countries5. Recent survey results suggest that many Korean patients have had 46 47 experience with the use of TKM for chronic fatigue6. However, the previous study 48 49 50 failed to give any clues as to the motivation for choosing TKM over conventional 51 52 medicine. 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 6 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Systematic reviews (SRs) on the effectiveness of complementary and alternative 6 7 medicine (CAM) interventions including acupuncture, moxibustion and herbal 8 9 10 medicines suggest that these alternative therapies may be effective in improving 11 7-9 12 symptoms related to chronic fatigue . However, there is no research available 13 14 examining why patients prefer and select CAM interventions, what they experience 15 For peer review only 16 during these treatment sessions and how they are affected at the end of the sessions. The 17 18 purpose of this qualitative study was to assess personal experiences of TKM in chronic 19 20 21 fatigue patients. In this study, we tried to understand their experience of symptoms, the 22 23 physical, psychological and social influences related to chronic fatigue, their motivation 24 25 for choosing TKM and their perceptions of TKM interventions. 26 27 28 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 7 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Methods 6 7 Recruitment of interviewees 8 9 Participants who visited TKM hospitals for complaints of continuous or repetitive 10 11 tiredness during the preceding six or more months were included for an interview. 12 Primarily, participants were recruited through referral from physicians in local TKM 13 14 hospitals in Seoul, Inchon and Daejeon, South Korea from July to November 2012. In 15 For peer review only 16 addition, acquaintances that were recommended by participants were also included in 17 interviews if appropriate. Interviewees had been recruited thorough a snowball sampling 18 19 method until the sample data were saturated. 20 21 22 Data Collection 23 24 Data collection was performed utilising one-on-one, in-depth interviews with 25 26 participants. The interviews were recorded and the contents were transcribed verbatim. 27 The interview questions were composed of main questions and any additional questions 28 29 asked by the research team through internal discussions. The main questions were 30 31 open-ended, such as ‘Tell us about your experience with traditional Korean medical 32 treatment of chronic fatigue’. The time spent for each interview was between one and 33 34 two hours; the content of the interview was considered to be saturated when no novel 35 http://bmjopen.bmj.com/ 36 content was obtained from participants. 37 38 39 Data Analysis 40 41 Qualitative content analysis is a research method used for the subjective interpretation 42 of textual data through the process of coding and identifying themes. The goal of 43 on October 2, 2021 by guest. Protected copyright. 44 content analysis is ‘to provide knowledge and understanding of the phenomenon under 45 10 46 study’ . Data analysis was performed by reading all data repeatedly, line by line, to 47 achieve data immersion. Codes were generated from the data and were sorted into 48 49 categories and subcategories based on the level of abstractness, depending on how 50 51 different codes are related and linked. Relationships were identified through a 52 comparison of the similarities and differences between the categories and subcategories. 53 54 55 56 Ethical considerations 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 8 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 This qualitative study was reviewed by the Oriental Hospital of Daejeon University 6 7 Human Research Ethics Committee in Korea (IRB approval number: DJOMC-94). The 8 9 research team received informed consent from each of the participants after the purpose 10 and methods of this study were explained to them. Each participant had been introduced 11 12 by TKM doctors from the TKM hospitals and was guaranteed self-determination, 13 14 anonymity, and confidentiality. The participants were provided with incentives for their 15 participation.For peer review only 16 17 18 19 Study Rigour 20 To establish the rigour of this study, the research team considered the credibility, 21 11 22 fittingness, auditability, and confirmability of each patient’s interview. All of the 23 24 members of the research team are experts in the qualitative research study method and 25 performed the data collection and analysis in this study based on the experiences of 26 27 participants, which were obtained through active dialogue and discussions. 28 29 30 Conducting the data collection and analysis cyclically added vivid and abundant data; 31 32 the recorded in-depth interviews of each participant were collected in accordance with 33 34 the principles of qualitative content analysis. In the process of drawing concepts and 35 categories from the data utilising a coding scheme, discussions were continued until an http://bmjopen.bmj.com/ 36 37 agreeable conclusion was reached among the researchers regarding the further 38 39 elaboration of the data analysis. 40 41 42 The results of the study were shown to the participants to confirm the description of

43 on October 2, 2021 by guest. Protected copyright. 44 their experiences. The contents of this study were translated into English by a bilingual 45 translator with specific guidance from the research team and all research members 46 47 reviewed the translated manuscript. 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 9 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Results 6 7 8 9 Fifteen chronic fatigue patents were interviewed in this study. Of the participants, 10 twelve had underlying diseases which might have been related to fatigue, three did not. 11 12 Five patients were male and ten were female. The age distribution was as follows: three 13 14 were in their 20s, two in their 30s, one in their 40s, six in their 50s, and three in their 15 60s. As forFor the duration peer of having fatigue review symptoms, six had only symptoms for ten or more 16 17 years, four for five to nine years, four for one to four years, and one for less than one 18 19 year. All participants had previous experience with TKM treatments, such as 20 acupuncture, moxibustion, and cupping, as well as herbal medications (Table 1). 21 22 23 24 1. Causes of fatigue 25 1) Physical factors 26 27 The interviewees generally recognised that their physical condition was related to innate 28 29 weakness, aging, and underlying disease as well as fatigue. However, some participants 30 felt that they did not pay much attention to their physical condition due to 31 32 overconfidence in their health which might be attributed to their symptoms. Some 33 34 participants engaged in an excessive amount of exercise, while others noted that bad 35 eating habits, such as frequently eating out or consuming instant foods, were related to http://bmjopen.bmj.com/ 36 37 fatigue. Additionally, participants thought that stress resulting from excessive household 38 39 chores or workloads was a cause of fatigue. 40 41 42 ‘Even though I managed to endure, when I was young I was always tired due to my

43 on October 2, 2021 by guest. Protected copyright. 44 feeble constitution, which has been present ever since my childhood… now I have 45 weakened and therefore feel more tired and find it is more difficult to endure due to a 46 47 lack of adaptability and immunity.’ (Participant F, M/54) 48 49 50 2) Personalities 51 52 Most of the participants found clues as to the cause of their fatigue from their personal 53 54 characteristics. They reported that they were sensitive to everything, full of worries, 55 introverted, and passive. Thus, they claimed that mental fatigue mostly originated from 56 57 their situation and that they were not able to express their thoughts and should only 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 10 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 conceal them. Moreover, some interviewees had a compulsive and principled character 6 7 which made them follow strict principles, placing a considerable burden on their daily 8 9 lives. 10 11 12 ‘I admit that it is difficult to sleep when I have some concerns, because I am sensitive. 13 14 When my parents-in-law were staying with us, I often woke up in the middle of the 15 night withFor concerns aboutpeer what I should review serve them in the only morning.’ (Participant C, 16 17 F/66) 18 19 20 ‘As for my personality, I excessively care about what would normally be overlooked. 21 22 That is to say, I tend to keep my promises…if I make a promise, I risk my life.’ 23 24 (Participant H, F/50) 25 26 27 2. Symptoms of fatigue 28 29 1) Physical and psychological symptoms 30 The participants experienced physical and psychological fatigue symptoms. They 31 32 complained of physical symptoms such as headaches, sleep disturbances, attention and 33 34 memory deficits, and difficulty getting up in the morning. In addition, some of the 35 participants expressed having a depressed emotional state described as ‘difficulty saying http://bmjopen.bmj.com/ 36 37 even a word’, ‘difficulty breathing due to severe headache’, ‘the feeling of being buried, 38 39 due to a lack of vigour’, ‘feeling sluggish’, and ‘feeling bad’. One participant reported 40 that her children gave her limb massages to relieve her fatigue symptoms. 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 ‘I just can’t do anything. I just can’t. When a headache attacks, I must simply sleep 45 without doing anything. Frankly speaking, it occurs so severely that I must lay myself 46 47 down.’ (Participant I, M/28) 48 49 50 ‘I wake up repeatedly after one or two hours of sleep; however, I fall asleep shortly 51 52 afterward, and the total amount of time sleeping is similar to that of other people. 53 54 Things are so repetitive that I just keep dreaming in the middle of sleeping and hence 55 feel sluggish when I get up in the morning, and because of this, I am more tired in 56 57 the daytime. I have the feeling of going up in smoke and the feeling of wind blowing 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 11 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 in my head… I always have heavy shoulders. It is as if a child is riding on my 6 7 shoulders.’ (Participant B, F/29) 8 9 10 It was noted that participants experienced sensitive reactions to surrounding stimuli and 11 12 emotional changes. Such psychological symptoms were often intensified into 13 14 demotivation, lower self-esteem, and severe depression. 15 For peer review only 16 17 ‘Even in a very routine conversation, I feel my husband annoying me even though he 18 19 is just talking as usual. I’ve been arguing with him almost every day because I speak 20 to him badly due to my illness.’ (Participant J, F/35) 21 22 23 24 ‘I was driven into a state in which I didn’t want to eat, didn’t have any desires, and 25 felt depressed… left alone with tear-drops.’ (Participant M, F/64) 26 27 28 29 2) Changes in everyday life 30 The interviewees reported that they had difficulty in being understood by others in 31 32 everyday life even though they experienced severe symptoms. The participants were 33 34 disappointed at the responses of other people who stated that fatigue is merely a trivial 35 symptom that everyone experiences normally. In particular, office workers were http://bmjopen.bmj.com/ 36 37 concerned about low performance in their workplaces and did not want to be recognised 38 39 as being incompetent by their co-workers and superiors. They underwent a vicious cycle 40 in which they drank a lot of caffeine drinks to mitigate their symptoms of fatigue and 41 42 increase their performance, in turn causing sleep disturbances.

43 on October 2, 2021 by guest. Protected copyright. 44 45 ‘I keep really calm outwardly. I don’t even notice anything in the mirror except that I 46 47 am a little pale. My outward expression does not reflect my inner troubles, so I am 48 49 very disappointed.’ (Participant H, F/50) 50 51 52 ‘I can’t help being ineffective in the afternoon because I am unable to focus. 53 54 Therefore, I find caffeine drinks such as coffee and green tea helpful initially, but 55 later I become so used to them that they keep me awake at night, hence the vicious 56 57 cycle of fatigue.’ (Participant B, F/29) 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 12 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 6 7 Additionally, participants were passive in family and social life because they were 8 9 always tired. The interviewees considered daily activities such as eating-out with their 10 families, outdoor activities, and travel a considerable burden, and increasingly avoided 11 12 their previously enjoyed hobbies, such as exercise, which made their families worried 13 14 and depressed the family atmosphere. In social life, they tried to abstain from 15 interpersonalFor relations peer in order to rest. review As a result, the variety only of their daily activities 16 17 shrank and became monotonous. 18 19 20 ‘Now, I continuously reduce social activities. Though I had promised to talk about 21 22 business to someone, I just wanted him to quit and leave. I was not supposed to say 23 24 “Let’s quit because I am tired.” Then, after the counselling session, I collapsed.’ 25 (Participant D, M/64) 26 27 28 29 3. Selection of traditional Korean medical treatment 30 1) Reasons why they received traditional Korean medical treatment 31 32 Before receiving TKM treatment, some participants visited western-medical hospitals to 33 34 treat their constant fatigue, but did not experience any healing effect or obtain a 35 particular diagnosis. To avoid continuously difficult situations, they tried TKM http://bmjopen.bmj.com/ 36 37 treatments. 38 39 40 ‘The reason why I decided to use oriental medical treatment was because western 41 42 medical hospitals didn’t recognise my symptoms, therefore I would not be cured.’

43 on October 2, 2021 by guest. Protected copyright. 44 (Participant G, M/51) 45 46 47 Some participants happened to receive TKM treatment upon the recommendation of 48 49 family and colleagues, who introduced them to famous TKM clinics or TKM 50 treatments. 51 52 53 54 ‘My daughters encouraged me to take a traditional Korean medication because I was 55 weak.’ (Participant O, F/59) 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 13 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 ‘People said that I should visit some place to be treated for fatigue because I should 6 7 be in good condition. As for traditional Korean medication treatments, large centres 8 9 are supposed to treat only one disease particularly well. I frequented many TKM 10 clinics.’ (Participant D, M/64) 11 12 13 14 Most of the participants believed that western medical doctors treat clearly identified 15 diseases For while TKM peer doctors restore review patients’ physical only functions to produce a 16 17 harmonious condition. They preferred TKM treatments because western medical 18 19 treatment may have severe side effects, while TKM does not have a heavy influence on 20 the body and has few side effects. Most of the participants believed that TKM consists 21 22 of a radical treatment that restores their weak body by improving their constitution or 23 24 increasing their immunity. Additionally, the participants believed that TKM would be 25 effective long-term if they endured the relatively long treatment time while their 26 27 symptoms got better or remained. 28 29 30 ‘Western medicine targets only short-term effects, but I certainly feel little burden 31 32 with traditional Korean medicine, even though a longer treatment is necessary 33 34 compared to western medicine.’ (Participant D, M/64) 35 http://bmjopen.bmj.com/ 36 37 2) Effects of traditional Korean medical treatment 38 39 Most of the participants took herbal medications to restore their fitness or to relieve 40 their symptoms of fatigue. Most of the participants felt improved: their fatigue-related 41 42 symptoms were relieved, and they felt more comfortable psychologically. Some

43 on October 2, 2021 by guest. Protected copyright. 44 participants relied more on TKM treatments because they enjoyed smelling herbal 45 medications and felt that their condition improved when receiving acupuncture. Some 46 47 of the participants reported that more effects were expected when they consulted 48 49 traditional Korean medical doctors and received physical and relaxation therapies. 50 51 52 ‘After receiving acupuncture twice a week along with traditional Korean medications, 53 54 I am now almost completely restored so that I can engage in exercise activities.’ 55 (Participant J, F/35) 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 14 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 ‘Before regularly visiting a traditional Korean medical centre, I suffered from 6 7 headaches almost every two days. Thus, headache medications were my best friends; 8 9 however, I have not had to take them since visiting the traditional Korean medical 10 centre.’ (Participant I, M/28) 11 12 13 14 The participants reported that they were able to bear the unpleasant taste of traditional 15 Korean medicationsFor andpeer the inconvenience review of their administration only for the sake of their 16 17 treatment. Additionally, they carried out a detailed self-evaluation process for taking 18 19 traditional Korean medications. They believed that traditional Korean medications are 20 effective only when taken early and that the effects of these medications might occur 21 22 later rather than earlier because they are restorative medications rather than cures. 23 24 Additionally, the participants believed that traditional Korean medications should be 25 taken periodically in the long term because they exert effects when taken but that they 26 27 are ineffective or have reduced effects when not taken. 28 29 30 ‘It seems that traditional Korean herbal medications have good effects in the early 31 32 phase of a disease. It seems that their effects are better when I happen to take them in 33 34 the early stages. Then, symptoms don’t worsen. What I feel when taking traditional 35 Korean medications periodically is that I don’t have any difficult feelings after taking http://bmjopen.bmj.com/ 36 37 them for approximately two or three weeks; they don’t cure me in two to three days, 38 39 as when I take western medications.’ (Participant E, F/26) 40 41 42 However, not every participant experienced these effects of traditional Korean medicine

43 on October 2, 2021 by guest. Protected copyright. 44 treatments. Some participants were not convinced of their claimed effects or reported no 45 effects. 46 47 48 49 ‘Because I was still too tired, I never thought they had any effects.’ (Participant G, 50 M/51) 51 52 53 54 4. Recognition of traditional Korean medicine 55 56 57 1) The traditional Korean medical perspective about fatigue 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 15 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Most of the participants were satisfied with the traditional Korean medical approach, 6 7 where doctors treat fatigue as a disease, provide positive counselling, and give a 8 9 prescription for the symptom. TKM doctors account for the causes of fatigue from the 10 perspective of TKM and make individually tailored prescriptions. 11 12 13 14 ‘Professor Son said that fatigue is also an illness. Fatigue is also an illness. He 15 classified Forit as a type ofpeer disease.’ (Participant review F, M/54) only 16 17 18 19 The participants tended to have more confidence in TKM if they were unsatisfied with 20 the conventional medical doctors’ diagnosis. Medical doctors are not interested in 21 22 fatigue patients because western medicine does not acknowledge chronic fatigue as a 23 24 disease; it offers treatment only when there is a precise diagnosis made based on an 25 examination. The participants were recommended by western medical doctors to receive 26 27 a short-term treatment for relieving symptoms or improving life habits. In particular, 28 29 they expressed disappointment because they felt that their symptoms were not properly 30 understood by western medical doctors. 31 32 33 34 ‘Western medicine uses only certain results from examinations such as blood tests 35 and X-ray scans to treat patients. I could not receive any treatment when my http://bmjopen.bmj.com/ 36 37 symptoms were outside of those results, and there are few treatments in western 38 39 medicine when I am sick and suffer from pain.’ (Participant J, F/34) 40 41 42 ‘Western medical doctors said there was nothing special, though I felt I was dying. I

43 on October 2, 2021 by guest. Protected copyright. 44 felt pain here and there and when I went to visit them because of my illness, I felt 45 crazy when they said I was “OK”.’ (Participant N, F/54) 46 47 48 49 2) Relationship with traditional Korean medical doctors 50 The participants felt comfortable with traditional Korean doctors who understood their 51 52 pain and listened to their concerns. The participants reported that they received 53 54 examinations as they were informed of medical knowledge when consulting TKM 55 doctors and felt able to ask questions of them freely. Some participants reported that 56 57 they didn’t spare medical expenses because they felt TKM doctors dealt not only with 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 16 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 their illness but also their hearts. 6 7 8 9 ‘I am much more familiar with traditional Korean medical doctors. I can get close to 10 them feeling no distance between us, so I can say anything and feel they will listen to 11 12 anything I say. Usually, when you have something to ask, you cannot say anything 13 14 for fear of what the western medical doctor will say.’ (Participant M, F/64) 15 For peer review only 16 17 ‘When visiting a traditional Korean medical clinic, I have a doctor examining my 18 19 pulse, and I listen to everything the doctor’s saying. I consult him to be informed of 20 what I’ve been ignorant of. When the professor says it will be better in this way, I am 21 22 convinced and come to know what I have been ignorant of. Additionally, it prevents 23 24 illness.’ (Participant L, F/59) 25 26 27 3) Limitations of traditional Korean medical treatment 28 29 Because the main treatment for chronic fatigue involves taking traditional Korean 30 medicine, the participants felt more economic burden with TKM than with western 31 32 medicine. Furthermore, their economic burden increases because the National Health 33 34 Insurance does not cover TKM; the non-establishment of the charge system in TKM has 35 been cause for disbelief with regards to treatment expenses. http://bmjopen.bmj.com/ 36 37 38 39 ‘You know health insurance does not cover TKM. The cost is 70,000~80,000 KRW 40 per visit. It takes 150,000 KRW to visit a clinic twice a week. In addition, as for 41 42 medications, you should expect to pay 500,000~600,000 KRW for two weeks’ doses.

43 on October 2, 2021 by guest. Protected copyright. 44 Therefore, you will spend 1,200,000~1,300,000 KRW. Consequently, the poor cannot 45 afford it. As a matter of fact, the government should provide welfare for this and not 46 47 for useless things.’ (Participant D, M/64) 48 49 50 Participants reported that TKM is problematic and that they encounter difficulties in 51 52 taking care of oral medications over the long period of treatment. They also noted that 53 54 there are limitations in fully relying on TKM as its principles and mechanisms of 55 treatment are not standardised and its treatment effects are vague. Additionally, they 56 57 suggested that it is necessary to explore methods of treatment in areas where western 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 17 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 medicine cannot provide cures and to improve medical services that are easily accessed 6 7 by all socioeconomic groups in terms of diversification of examination programs in 8 9 traditional Korean medicine as in the case of western medicine. 10 11 12 ‘They can standardise TKM by clearing up vague and equivocal parts given that once 13 14 upon a time, Sir Heo Jun had established a system during the Joseon Dynasty. It is 15 ridiculousFor for modern peer people to say thatreview they cannot provide only standardised treatments. 16 17 They pull tricks to do things on their own. They never consider things from the 18 19 perspective of consumers.’ (Participant G, M/51) 20 21 22 5. Daily Life Care along with Fatigue 23 24 25 The participants believed that they needed to manage their health care on their own in 26 27 order to lead a harmonious life with fatigue, because fatigue is a disease that they 28 29 cannot help living with. The participants recognised the limitations of TKM and 30 therefore were trying to take care of their health in advance so that they could prevent 31 32 the vicious cycle of fatigue by maintaining their improved condition through treatment. 33 34 35 ‘I admit fatigue will live long; that is to say, it is a partner, a familiar partner. Should http://bmjopen.bmj.com/ 36 37 I say it’s like sleeping with the enemy? As you know, it is a thing that you cannot help 38 39 being with though you hate it and want to get rid of it. It feels like 20~30 years of 40 marriage or a mom and dad-like feeling. Though I hate it, I can’t help it as I have 41 42 been cursed with fatigue. I feel like I should negotiate with it during my life.’

43 on October 2, 2021 by guest. Protected copyright. 44 (Participant E, F/26) 45 46 47 ‘I get better if I am treated. I’ve felt that I should make efforts to change my life 48 49 habits by not being dependent solely on the treatment. I should be engaged in 50 self-management in order to avoid such a degree of chronic fatigue.’ (Participant J, 51 52 F/35) 53 54 55 The participants made efforts to have a positive attitude towards life in order to carry 56 57 out good health care on their own and to be engaged in more positive self-management 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 18 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 in terms of stress management, exercise, swimming, meditation, etc. Most of them 6 7 found pleasure in their mind and tried to be grateful to life. Additionally, they made 8 9 meditation a part of their life and controlled their amount of exercise in consideration of 10 their condition. 11 12 13 14 ‘Now, I will live in pleasure. It seems that it is good for my health if I am pleased.’ 15 (ParticipantFor H, F/50) peer review only 16 17 18 19 ‘As I accumulate tiredness, I consider it when I exercise. Then, I will exercise three 20 times when I used to do it 5 times before. I quit when I feel tired. That way, I expect 21 22 that I will get better.’ (Participate G, M/51) 23 24 25 26 27 28 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 19 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Discussion 6 7 From this study, we found that patients with chronic fatigue had believed that the 8 9 development of their illness was from physical degradation by underlying diseases or 10 the aging process and introverted personal characteristics. They experienced physical 11 12 and psychological symptoms associated with fatigue that resulted in severe difficulties 13 14 in relation to their daily routine activities. The motivation for choosing TKM practice 15 was dissatisfactionFor with peer conventional review medicine and previous only positive experiences with 16 17 TKM treatments from patients themselves or from caregivers. After TKM treatments, 18 19 patients found that TKM practitioners considered fatigue to be a treatable illness, and 20 patients felt comfortable with the doctor-patient relationship in TKM practice. 21 22 Economic burden and scarcity of scientific evidence were regarded as limitations for the 23 24 utilisation of TKM. Finally, patients recognised their fatigue and took it as a ‘familiar 25 partner’ that lives with them for their entire lifetime. 26 27 28 29 The strengths of this study are its exploration of the patients’ perception and experience 30 of chronic fatigue and the utilisation of TKM. Previous studies have reported that 31 32 patients with chronic fatigue tend to utilise complementary and alternative medicine 33 7 34 (CAM) in Western society . According to a recent survey study, many patients with 35 chronic fatigue were reported to use non-conventional medicinal treatments in Korea as http://bmjopen.bmj.com/ 36 4 37 well . However, this study did not suggest any information on the perception of fatigue 38 39 in patients and their motivation regarding why they chose TKM for their symptoms. 40 From this qualitative research, we explored the perceptions and personal experiences of 41 42 TKM patients and tried to find out what they considered and expected when coping

43 on October 2, 2021 by guest. Protected copyright. 44 with chronic fatigue. Second, the motivation for choosing alternative care in chronic 45 fatigue patients was observed in the Korean context. Although it is controversial, the 46 47 main reasons for choosing CAM practitioners are reported to be a dissatisfaction with 48 49 conventional treatments and a preference for the ideology of alternative therapies, 50 which in Western societies represents a holistic attitude towards health care12 13. The 51 52 motivation of Korean patients with chronic fatigue was associated with noncompliance 53 54 or discontent with conventional treatment, as was the case in Western societies. 55 However, interestingly, patients had the belief that TKM has the benefit of improving 56 57 constitutional weakness, which was accepted as the imaginary pathology from where 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 20 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 chronic fatigue originated and is the reason why conventional medicine was not 6 7 effective for improving their symptoms. In addition, previous positive experiences with 8 9 the use of TKM by patients themselves or surrounding caregivers strengthened this 10 belief. These concepts might be based on Korean-specific health care ideals. In Korea, 11 12 TKM is not merely an alternative medicine, it is a medical system which has been 13 14 practiced throughout Korean history and currently constitutes one major part of the 15 health careFor system inpeer Korea along review with conventional medicine.only Two independent 16 17 educational and practice systems exist based on the exclusive license classifications in 18 14 19 Korea . Based on this clinical situation, patients with chronic fatigue seem to visit a 20 TKM clinic not as a counterplan for conventional medicine but as the optimal choice 21 22 among the possible treatments. From this study, we also found that the patient’s belief 23 24 was strong enough to endure the long-term and generally intolerable interventions of 25 TKM. This concept has been similarly observed in our previous qualitative research 26 27 concerning patients’ experience of moxibustion for chronic knee osteoarthritis: even 28 29 though moxibustion could introduce severe adverse events, including burn wounds, 30 patients attempted to continue the moxibustion with moderate to high intensity15. How 31 32 beliefs regarding TKM are formulated and reinforced in the Korean population needs to 33 34 be examined in future studies alongside studies on the motivation for choosing TKM 35 treatments and on the perceptions of TKM. http://bmjopen.bmj.com/ 36 37 38 39 This study has limitations. Although interviews were conducted until the data reached 40 saturation, the generalizability of this study cannot be assured in several respects. 41 42 Patients who did not want TKM treatments or dropped out during the treatment courses

43 on October 2, 2021 by guest. Protected copyright. 44 might reflect an opposing perception to that of the pro-TKM patients. We included 45 patients with chronic fatigue referred from TKM doctors in this study, which might 46 47 introduce selection bias. TKM is mainly practiced in Korea so the study results need to 48 49 be interpreted carefully among patients with different characteristics such as racial 50 background, educational or social status. Another limitation is the obscurity of the 51 52 definition of the study population. Chronic fatigue can originate from diverse mental or 53 16 54 physical conditions . The severity and importance of symptoms and their impact on the 55 daily lives of patients are not the same among all patients. In this study, we intended to 56 57 explore the perception and motivation of patients using TKM as a basic step towards 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 21 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 understanding TKM users. Because of the difficulty in recruiting patients who had both 6 7 fatigue lasting more than 6 months and experience with TKM therapies, we used a 8 9 strategy that adopted a broader disease definition of chronic fatigue. Future research 10 through interviews on TKM usage with more focused patient groups, including fatigue 11 12 in cancer or endocrine disease, may highlight the value of TKM in different contexts. 13 14 15 From thisFor study, we peer found that patients review recognised chronic only fatigue as an important 16 17 symptom causing severe disability in their daily lives and sought appropriate treatments. 18 19 However, they thought that physicians tended to recognise fatigue as a minor problem 20 which did not need aggressive assessment and appropriate interventions commensurate 21 17 22 with patients’ requests . In allopathic medicine, only a halfway solution is offered as 23 24 treatment for chronic fatigue generally, because pathophysiological mechanisms have 25 not been established yet in many cases16. Considering the gap between patients’ 26 27 expectations and clinical practice, it is no surprise that patients in Korea are reported to 28 6 29 frequently use alternative methods of coping with their symptoms . Health care policy 30 administrators need to keep in mind that chronic fatigue may be a serious health 31 32 problem and solutions should be proposed based on the patient’s perception of their 33 34 condition. In addition, if evidence regarding the effectiveness of TKM interventions for 35 chronic fatigue were to be provided by rigorous studies, TKM might be suggested as an http://bmjopen.bmj.com/ 36 37 appropriate way to solve issues related to chronic fatigue. 38 39 40 Contributorship statement 41 42 HMS, EYP, DHK, EJK, MSS and THK conceived and participated in the design of this

43 on October 2, 2021 by guest. Protected copyright. 44 research. HMS, EYP, DHK and EJK conducted the interviews and analysed the data. 45 HMS, EYP, DHK, EJK, MSS and THK wrote the draft of this manuscript. 46 47 48 49 Competing interest 50 None. 51 52 53 54 Funding 55 This study was supported by Korea Institute of Oriental medicine (K12010). 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 22 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Data sharing 6 7 No additional data available 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 23 of 24 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 6 7 Reference 8 9 1. Klimas NG, Broderick G, Fletcher MA. Biomarkers for chronic fatigue. Brain, behavior, and immunity 10 2012;26(8):1202-10. 11 2. Jason LA, Evans M, Brown M, et al. What is fatigue? Pathological and nonpathological fatigue. PM & 12 R : the journal of injury, function, and rehabilitation 2010;2(5):327-31. 13 3. Afari N, Buchwald D. Chronic fatigue syndrome: a review. The American journal of psychiatry 14 2003;160(2):221-36. 4. Kim CH, Shin HC, Won CW. Prevalence of chronic fatigue and chronic fatigue syndrome in Korea: 15 community-basedFor peer primary care study. review Journal of Korean medical only science 2005;20(4):529-34. 16 5. Shin D. [Trends in research on the history of medicine in Korea before the modern era]. Ui sahak 17 2010;19(1):1-43. 18 6. Choi DH KC, Shin HC, Park YW, Sung EJ, Lee KH. Patterns of complementary and alternative 19 medicine therapies in patients with chronic fatigue or pain. Korean J Fam Med 2009;14:182-89. 20 7. Alraek T, Lee MS, Choi TY, et al. Complementary and alternative medicine for patients with chronic 21 fatigue syndrome: a systematic review. BMC complementary and alternative medicine 22 2011;11:87. 23 8. Adams D, Wu T, Yang X, et al. Traditional Chinese medicinal herbs for the treatment of idiopathic 24 chronic fatigue and chronic fatigue syndrome. The Cochrane database of systematic reviews 25 2009(4):CD006348. 26 9. Wang T, Zhang Q, Xue X, et al. A systematic review of acupuncture and moxibustion treatment for chronic fatigue syndrome in . The American journal of Chinese medicine 2008;36(1):1-24. 27 10. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qualitative health research 28 2005;15(9):1277-88. 29 11. Sandelowski M. The problem of rigor in qualitative research. ANS Advances in nursing science 30 1986;8(3):27-37. 31 12. Astin JA. Why patients use alternative medicine: results of a national study. JAMA : the journal of the 32 American Medical Association 1998;279(19):1548-53. 33 13. Kelner M, Wellman B. Health care and consumer choice: medical and alternative therapies. Soc Sci 34 Med 1997;45(2):203-12. 35 14. Ryu J, Choi B, Lim B, et al. Medical practices and attitudes of dual-licensed medical doctors in Korea. http://bmjopen.bmj.com/ 36 Evidence-based complementary and alternative medicine : eCAM 2013;2013:183643. 37 15. Son HM, Kim DH, Kim E, et al. A qualitative study of the experiences of patients with knee 38 osteoarthritis undergoing moxibustion. Acupuncture in medicine : journal of the British Medical 39 Acupuncture Society 2013;31(1):39-44. 16. Finsterer J, Mahjoub SZ. Fatigue in Healthy and Diseased Individuals. The American journal of 40 hospice & palliative care 2013. 41 17. Cho HJ, Menezes PR, Hotopf M, et al. Comparative epidemiology of chronic fatigue syndrome in 42 Brazilian and British primary care: prevalence and recognition. The British journal of 43 psychiatry : the journal of mental science 2009;194(2):117-22. on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 24 of 24 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Table 1. Characteristics of inintervieweesterviewees 6 7 Participant’s Sex/ Underlying diseases Duration of Chief complaints Experience of 8 code Age illness TKM* treatments (year) 9 A F/40 Thyroid gland cancer 3 Migraine, Herbal medicine and 10 postoperative status/ dyspepsia, acupuncture 11 cholecystectomy short-term memory loss 12 B F/29 None 5 Headache, Herbal medicine and 13 dyspepsia, neck acupuncture 14 and shoulder pain, insomnia 15 CFor F/66 peer Hypertension review 10 Leg weakness,only Herbal medicine, 16 walking difficulty, acupuncture and 17 headache moxibustion D M/64 Angina pectoris 40 Headache, wasting Herbal medicine 18 E F/26 Anaemia 9 Blurred vision, Herbal medicine 19 periorbital 20 tenderness, neck stiffness, nausea, 21 headache 22 F M/54 Chronic bronchitis 5 Heaviness in the Herbal medicine and morning, wasting moxibustion 23 G M/51 None 3 Nasal sensitivity to Herbal medicine and 24 smoke pollution; acupuncture 25 headache; difficulty speaking 26 H F/50 Uterine Myoma 10 Headache, wasting Herbal medicine, 27 moxibustion and 28 cupping therapy I M/28 Pyelonephritis 10 Headache, Herbal medicine, 29 palpitation, tremor acupuncture, 30 of hands and feet moxibustion and 31 cupping therapy J F/35 Diabetes/ Spondylosis 5 Difficulty waking Herbal medicine, 32 up in the morning, moxibustion and 33 lethargy, sweating cupping therapy 34 during sleep, anorexia http://bmjopen.bmj.com/ 35 K M/33 Allergic rhinitis 11 Lethargy Herbal medicine 36 L F/59 Gastritis 15 Loss of energy Herbal medicine, 37 acupuncture, moxibustion and 38 cupping therapy 39 M F/64 Gastric cancer 3 Blurred vision, loss Herbal medicine, 40 postoperative status of energy acupuncture and moxibustion 41 N F/54 Chronic gastritis 1 Hearing Herbal medicine, 42 disturbance, acupuncture and eyestrain, cupping therapy 43 stomatitis, on October 2, 2021 by guest. Protected copyright. 44 difficulty waking 45 up O F/59 None 0.6 Feeling heavy in Herbal medicine and 46 the head, dizziness, moxibustion 47 loss of energy, 48 feeling of shoulder 49 heaviness *TKM: traditional Korean medicine 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from

Experiences with, perceptions of and attitudes toward traditional Korean medicine (TKM) in patients with chronic fatigue: a qualitative, one-on-one, in-depth interview study

For peer review only Journal: BMJ Open

Manuscript ID: bmjopen-2014-006178.R1

Article Type: Research

Date Submitted by the Author: 21-Jul-2015

Complete List of Authors: Son, Haeng-Mi; Department of Nursing, University of Ulsan Park, Eun Young; College of Nursing, Gachon University Kim, Duck Hee; Department of Nursing, Woosuk University Kim, Eunjeong; Department of Nursing, Daedong College Shin, Mi-Suk; Department of nursing, Daejeon University Kim, Tae-Hun; Korean Medicine Clinical Trial Center, Korean Medicine Hospital, Kyung Hee University

Primary Subject Complementary medicine Heading:

Secondary Subject Heading: Qualitative research

COMPLEMENTARY MEDICINE, QUALITATIVE RESEARCH, Adult palliative Keywords:

care < PALLIATIVE CARE http://bmjopen.bmj.com/

on October 2, 2021 by guest. Protected copyright.

For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 1 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 MS to BMJ Open 4 5 6 7 8 Experiences with, perceptions of and attitudes toward traditional Korean medicine (TKM) in patients with 9 10 chronic fatigue: a qualitative, one-on-one, in-depth interview study 11 12 13 14 Haeng-Mi Son1, Park, Eun Young2, Kim, Duck Hee3, Kim, Eunjeong4, Mi-Suk Shin5, Tae-Hun Kim6,* 15 For peer review only 16 17 18 1 19 Department of Nursing, University of Ulsan, Ulsan, Korea

20 2 21 College of Nursing, Gachon University, Incheon, Korea 22 3 23 Department of Nursing, Woosuk University, Wanju, Korea 24 25 4 Department of Nursing, Daedong College, Busan, Korea 26 27 5 Department of nursing, Daejeon University, Daejeon, Korea 28 29 6 Korean Medicine Clinical Trial Center, Korean Medicine Hospital, Kyung Hee University, Seoul, South Korea 30 31

32 33 34 *Corresponding author 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 2 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Abstract 4 5 6 Objectives 7 8 To explore chronic fatigue patients’ perceptions of and experiences with traditional Korean 9 10 medicine (TKM) and their motivation for choosing TKM 11 12 Design 13 14 Qualitative, one-on-one, in-depth interview study 15 For peer review only 16 Setting 17 18 19 Primary TKM hospitals in Seoul, Inchon and Daejeon, South Korea 20 21 Results 22 23 Fifteen chronic fatigue patents were interviewed in this study. Patients with chronic fatigue 24 25 experienced physical and psychological symptoms that resulted in severe difficulties associated 26 27 with routine daily activities. The motivations for choosing TKM were primarily dissatisfaction 28 29 with conventional medicine and previous positive experiences with TKM. While undergoing 30 31 TKM treatment, patients found that TKM practitioners considered fatigue to be a treatable illness, 32 33 34 and patients felt comfortable with the doctor-patient relationship in TKM. 35 http://bmjopen.bmj.com/ 36 Conclusion 37 38 Health care providers need to be concerned about the symptoms of chronic fatigue to a degree 39 40 that is in line with the patient’s own perceptions. Korean patients with chronic fatigue choose 41 42 TKM as an alternative to fulfil their long-term needs that were unmet by conventional medicine, 43 on October 2, 2021 by guest. Protected copyright. 44 and they are considerably positively influenced by TKM. TKM may present a possible therapy to 45 46 47 alleviate symptoms of diseases that conventional medicine does not address and is an approach 48 49 that has a considerable effect in Korean patients. 50 51 Keywords 52 53 Chronic fatigue, traditional Korean medicine, TKM, qualitative research 54 55 56 57 58 Article summary 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 3 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Strengths and limitations of this study 4 5 o 6 Traditional Korean medicine (TKM) is a member of the traditional Eastern Asian Medicine system; the 7 8 members of this system share identical origins, interventions and medical theories with traditional Chinese 9 10 medicine but have been developed and practiced in the specific context of each country. 11 12 o This is a qualitative study of the perception and experience of patients with chronic fatigue in regard to 13 14 TKM. The study results provide detailed insight into the patients’ decision to use TKM. Practitioners could 15 For peer review only 16 use these findings to understand what motivates patients with chronic fatigue to seek complementary and 17 18 19 alternative treatments, including TKM, for the promotion of their health. 20 o 21 For our one-on-one, in-depth interviews, we recruited interviewees through referrals from TKM physicians 22 23 and used a snowball sampling method, which potentially introduced a bias, favouring interviewees with 24 25 positive opinions of TKM treatments. 26 27 o We found that chronic fatigue patients believed that their symptoms were related to normal aging and 28 29 personal characteristics as well as physical illness. Dissatisfaction with conventional medical treatment was 30 31 the key motivation for choosing TKM clinics. Patients had a tendency to willingly participate in the TKM 32 33 34 treatment, even though it demands endurance and sometimes includes intolerably painful treatment 35 http://bmjopen.bmj.com/ 36 processes such as those that may result in the risk of burn injury. 37 38 o The limitation is that the study findings can be only applied to the Korean population that uses or is at least 39 40 familiar with TKM. 41 42 43 on October 2, 2021 by guest. Protected copyright. 44

45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 4 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Introduction 4 5 6 7 8 Fatigue is generally accepted to be a combination of symptoms that is an acute response to 9 10 physical or mental exertion and is characterised by recovery after rest. When fatigue symptoms 11 12 continue for more than six months, it is defined as a chronic condition1. Various types of illnesses 13 14 are associated with fatigue2. However, many patients who complain of severe disability in their 15 For peer review only 16 daily lives have fatigue symptoms that cannot be explained by pathological causes3. Chronic 17 18 19 fatigue syndrome, a condition that is defined by a period of more than six months of continuous 20 21 fatigue without the presence of a specific underlying disease, is prevalent among the general 22 23 population in Korea. The prevalence is estimated to be 0.6 to 2.0 %, which is quite similar to that 24 25 found in Western societies (0.5 to 2.5 %)4. 26 27 28 29 Traditional Korean medicine (TKM) is a medical practice system included in the category of 30 31 orthodox medicine in Korea. TKM interventions consist of herbal medicine, acupuncture, 32 33 34 moxibustion, and cupping therapies, similar to those of traditional Chinese medicine. However, 35 http://bmjopen.bmj.com/ 36 TKM has developed unique medical theories, including Sasang constitutional medicine and the 37 38 syndrome differentiation method based on Dongeuibogam, and styles of practice, including the 39 40 Saam acupuncture method, that have been influenced by the medical practices in other East Asian 41 42 countries5. Sasang constitutional medicine explains physiology and pathology based on the 43 on October 2, 2021 by guest. Protected copyright. 44 different types of inherited constitutions of an individual person. One patient’s constitution, 45 46 47 whether it be of the Taeyang, Taeeum, Soyang or Soeum type, does not change during their 48 49 lifetime, and symptom patterns can be different based on specific constitutions, even though the 50 51 pathological causes do not differ between patients. In this sense, treatment strategies are 52 53 preferentially focused on the patient’s specific constitution, not on the pathology, which is distinct 54 55 from the practices of TCM6. Dongeuibogam, written by Heo, Ju in 1610, is considered to be the 56 57 canonical work on the clinical practice of TKM in Korea7. The system of diagnosis and modality 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 5 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 for treatment in Dongeuibogam is constructed based on the specific Korean context. For example, 4 5 6 all of the names of medicinal herbs were written in , the Korean alphabet, to make them 7 8 easier to understand. In the book, substitutes for some herbs that do not naturally grow on the 9 10 Korean peninsula are suggested. Saam acupuncture is based on a principle of the selection of 11 12 acupuncture points and stimulating methods of needles based on TKM theory. As with Sasang 13 14 constitutional medicine, Saam acupuncture also suggests an individualised and tailored 15 For peer review only 16 therapeutic strategy. Saam acupuncture adopted TCM theories such as the five elements and their 17 18 19 interactions, but detailed the features of acupuncture practice are quite different from those of

20 8 9 21 TCM . 22 23 24 25 Systematic reviews (SRs) on the effectiveness of complementary and alternative medicine 26 27 (CAM) interventions including acupuncture, moxibustion and herbal medicines suggest that these 28 29 alternative therapies may be effective in improving symptoms related to chronic fatigue8 10 11. In 30 31 addition, recent survey results suggest that many Korean patients have had experience with TKM 32

33 12 34 for the treatment of chronic fatigue . However, there is no research available examining why 35 http://bmjopen.bmj.com/ 36 patients prefer and select CAM interventions, what they experience during these treatment 37 38 sessions, or how they are affected at the end of the sessions. The purpose of this qualitative study 39 40 was to assess the personal experiences of chronic fatigue patients administered TKM treatments. 41 42 We tried to understand the patients’ experience of their symptoms, the physical, psychological 43 on October 2, 2021 by guest. Protected copyright. 44 and social influences related to chronic fatigue, their motivation for choosing TKM and their 45 46 47 perceptions of TKM interventions. 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 6 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Methods 4 5 6 Recruitment of interviewees 7 Participants who visited TKM hospitals with complaints of continuous or repetitive tiredness 8 9 during the preceding six or more months were included in the pool of interview subjects. TKM 10 hospitals are specific medical institutions in Korea where qualified TKM doctors practice, using 11 12 medicinal herbs, acupuncture, moxibustion, cupping etc., based on TKM principles. Generally, 13 14 musculoskeletal disease is the most frequent reason for visiting TKM hospitals, and chronic 15 fatigue is alsoFor one of the majorpeer reasons for review visiting TKM hospitals only13. Participants were primarily 16 17 recruited through referrals from physicians in local TKM hospitals in Seoul, Inchon and Daejeon, 18 South Korea, from July to November 2012. In addition, acquaintances who were recommended 19 20 by participants were also included in interviews, if appropriate. Interviewees were recruited 21 22 thorough a snowball sampling method until the sample data were saturated. Research participants 23 participated on their own initiative, and no one refused to participate in the data collection of this 24 25 study. Fifteen chronic fatigue patents were interviewed for this study. Of the participants, twelve 26 27 had underlying diseases that might have been related to fatigue, three did not. Five patients were 28 male, and ten were female. The age distribution was as follows: three were in their 20s, two in 29 30 their 30s, one in their 40s, six in their 50s, and three in their 60s. As for the duration of the fatigue 31 symptoms, six had symptoms for ten or more years, four for five to nine years, four for one to 32 33 four years, and one for less than one year. All participants had previous experience with TKM 34 35 treatments, such as acupuncture, moxibustion, and cupping, as well as herbal medications (Table http://bmjopen.bmj.com/ 36 1). 37 38 39 40 41 42 Data Collection 43 Data collection was performed using one-on-one, in-depth interviews of participants. The on October 2, 2021 by guest. Protected copyright. 44 45 interviews were audio recorded by the interviewers, and the contents were transcribed verbatim. 46 47 The interview questions comprised the main questions and any additional questions asked by the 48 research team after internal discussion. The main questions were open-ended, such as ‘Tell us 49 50 about your experience with traditional Korean medical treatment of chronic fatigue’. The time 51 52 spent on each interview was between one and two hours. Interviews were conducted in places 53 where participants felt comfortable to be interviewed, such as a quiet café, a hospital conference 54 55 room or a participant’s home. To clarify interview components that were unclear and to 56 supplement the interview for some participants (A, J, O), additional phone interviews were 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 7 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 conducted (Table 2). The content of the interviews was considered to be saturated when no novel 4 5 content was obtained from participants. 6 7 8 Data Analysis 9 10 Previous surveys on chronic fatigue syndrome only dealt with prevalence, physical and emotional 11 symptoms and diagnostic features from the TCM point of view14. However, these studies did not 12 13 cover the patient’s experience and perception of the usage of TKM. Qualitative content analysis is 14 15 a research methodFor used forpeer the subjective review interpretation of textual only data through the process of 16 coding and the identification of themes. Qualitative Content Analysis is a flexible and pragmatic 17 18 research method15 for conducting qualitative research without any philosophical presumptions, 19 20 using a specific qualitative research method. In this study, researchers applied Qualitative Content 21 Analysis to understand the patient’s experience of suffering from chronic fatigue and to 22 23 understand the usefulness of TKM treatment without any philosophical presumptions of the 24 specific qualitative research methods. The goal of content analysis is to provide knowledge and 25 26 understanding of the phenomenon being studied.15 We adopted a qualitative analysis method to 27 28 assess chronic fatigue syndrome from the perspective of patient’s experience and perception of 29 TKM. All authors participated in the analysis, and differences of opinion were resolved through 30 31 discussion. Data analysis was performed by repeatedly reading all data, line by line, to achieve 32 33 data immersion. Codes were generated from the data and were sorted into categories and 34 subcategories based on the level of abstractness and how different codes were related and linked. 35 http://bmjopen.bmj.com/ 36 Relationships were identified through a comparison of the similarities and differences between 37 the categories and subcategories. We present concepts, subcategories, and categories in detail, as 38 39 well as a coding tree (Table 3 and Figure 1). 40 41 42 Ethical considerations 43 on October 2, 2021 by guest. Protected copyright. 44 This qualitative study was reviewed by the Oriental Hospital of Daejeon University Human 45 46 Research Ethics Committee in Korea (IRB approval number: DJOMC-94). The research team 47 received informed consent from each of the participants after the purpose and methods of the 48 49 study were explained to them. Each participant had been introduced to the study by TKM doctors 50 from the TKM hospitals and was guaranteed self-determination, anonymity, and confidentiality. 51 52 The participants were provided with incentives for their participation. 53 54 55 Study Rigour 56 57 To establish the rigour of this study, the research team considered the credibility, auditability, and 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 8 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 confirmability16 of each patient’s interview. All of the members of the research team are experts 4 5 in the qualitative research study method and performed the data collection and analysis for this 6 7 study based on the experiences of the participants, which were assessed through active dialogue 8 and discussion. 9 10 11 Conducting the data collection and analysis in a cyclical manner allowed for the acquisition of 12 13 vivid and abundant data; the recorded in-depth interviews of each participant were collected in 14 15 accordance withFor the principles peer of qualitative review content analysis. only In the process of extracting 16 concepts and categories from the data utilising a coding scheme, discussions were continued until 17 18 an agreeable conclusion was reached among the researchers regarding the further elaboration of 19 20 the data analysis. 21 22 23 The results of the study were shown to the participants to confirm the description of their 24 experiences. The contents of this study were translated into English by a bilingual translator with 25 26 specific guidance from the research team, and all research members reviewed the translated 27 28 manuscript. 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 9 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Results 4 5 6 7 Fifteen chronic fatigue patents were interviewed in this study. Of the participants, twelve had 8 underlying diseases that might have been related to fatigue, three did not. Five patients were male, 9 10 and ten were female. The age distribution was as follows: three were in their 20s, two in their 30s, 11 one in their 40s, six in their 50s, and three in their 60s. As for the duration of fatigue symptoms, 12 13 six had symptoms for ten or more years, four for five to nine years, four for one to four years, and 14 15 one for less thanFor one year. peerAll participants reviewhad previous experience only with TKM treatments, such as 16 acupuncture, moxibustion, and cupping, as well as herbal medications (Table 1). 17 18 19 20 Patients with chronic fatigue experienced chronic symptoms due to physical factors and factors 21 that characteristically cause chronic fatigue. Participants were unable to conduct normal daily 22 23 activities due to their physical and psychological symptoms. When experiencing improvements in 24 their chronic fatigue symptoms after TKM treatment, participants recognised that TKM was more 25 26 appropriate than western medicine for treating chronic fatigue. By experiencing chronic fatigue, 27 28 participants realised the importance of the self-management of their health in their daily lives 29 (Figure 1). 30 31 32 33 1. Causes of fatigue 34 1) Physical factors 35 http://bmjopen.bmj.com/ 36 The interviewees generally recognised that their physical condition was related to innate 37 weakness, aging, and underlying disease as well as fatigue. However, some participants felt that 38 39 they did not pay much attention to their physical condition due to overconfidence in their health, 40 41 which might be attributed to their symptoms. Some participants engaged in an excessive amount 42 of exercise, while others noted that bad eating habits, such as frequently eating out or consuming 43 on October 2, 2021 by guest. Protected copyright. 44 ready-made foods, were related to fatigue. Additionally, participants thought that stress resulting 45 46 from excessive household chores or workloads was the cause of fatigue. 47 48 49 ‘Even though I managed to endure, when I was young I was always tired due to my feeble 50 constitution, which has been present ever since my childhood… now I have weakened and 51 52 therefore feel more tired and find it is more difficult to endure due to a lack of adaptability and 53 54 immunity.’ (Participant F, M/54) 55 56 57 2) Personalities 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 10 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Most of the participants found clues to the cause of their fatigue in their personal characteristics. 4 5 They reported that they were sensitive to everything, full of worry, introverted, and passive. Thus, 6 7 they claimed that mental fatigue originated largely from their situation and because they were not 8 able to express their thoughts and felt that they should conceal them. Moreover, some 9 10 interviewees had compulsive and self-restricting characteristics that made them follow strict 11 principles, placing a considerable burden on their daily lives. 12 13 14 15 ‘I admit that Forit is difficult peer to sleep when reviewI have some concerns, only because I am sensitive. When 16 my parents-in-law were staying with us, I often woke up in the middle of the night with 17 18 concerns about what I should serve them in the morning.’ (Participant C, F/66) 19 20 21 ‘As for my personality, I excessively care about what would normally be overlooked. That is to 22 23 say, I tend to keep my promises…if I make a promise, I do my best to the last drop of my blood.’ 24 (Participant H, F/50) 25 26 27 28 2. Symptoms of fatigue 29 1) Physical and psychological symptoms 30 31 The participants experienced physical and psychological fatigue symptoms. They complained of 32 33 physical symptoms such as headaches, sleep disturbances, attention and memory deficits, and 34 difficulty getting up in the morning. In addition, some of the participants indicated that they had a 35 http://bmjopen.bmj.com/ 36 depressed emotional state described as ‘difficulty saying even a word’, ‘difficulty breathing due 37 to severe headache’, ‘the feeling of being buried, due to a lack of vigour’, ‘feeling sluggish’, and 38 39 ‘feeling bad’. One participant reported that her children gave her limb massages to relieve her 40 41 fatigue symptoms. 42 43 on October 2, 2021 by guest. Protected copyright. 44 ‘I just can’t do anything. I just can’t. When a headache attacks, I must simply sleep without 45 46 doing anything. Frankly speaking, it occurs so severely that I must lay myself down.’ 47 (Participant I, M/28) 48 49 50 ‘I wake up repeatedly after one or two hours of sleep; however, I fall asleep shortly afterward, 51 52 and the total amount of time sleeping is similar to that of other people. Things are so repetitive 53 54 that I just keep dreaming in the middle of sleeping and hence feel sluggish when I get up in the 55 morning, and because of this, I am more tired in the daytime. I have the feeling of walking in a 56 57 fog and the feeling of wind blowing in my head… I always have heavy shoulders. It is as if a 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 11 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 child is riding on my shoulders.’ (Participant B, F/29) 4 5 6 7 Participants experienced sensitive reactions to surrounding stimuli and emotional changes. Such 8 psychological symptoms often intensified into demotivation, lower self-esteem, and severe 9 10 depression. 11

12 13 ‘Even in a very routine conversation, I feel my husband annoying me even though he is just 14 15 talking as usual.For I’ve been peer arguing with himreview almost every day becauseonly I speak to him badly due 16 to my illness.’ (Participant J, F/35) 17 18 19 20 ‘I was driven into a state in which I didn’t want to eat, didn’t have any desires, and felt 21 depressed… left alone with teardrops.’ (Participant M, F/64) 22 23 24 2) Changes in everyday life 25 26 The interviewees reported that they had difficulty being understood by others in everyday life, 27 28 even though they experienced severe symptoms. The participants were disappointed by the 29 responses of other people who stated that fatigue is merely a trivial symptom that everyone 30 31 experiences normally. In particular, office workers were concerned about low performance in the 32 33 workplace and did not want to be recognised as being incompetent by their co-workers and 34 superiors. They underwent a vicious cycle in which they drank many caffeinated drinks to 35 http://bmjopen.bmj.com/ 36 mitigate their symptoms of fatigue and increase their performance, which in turn caused sleep 37 disturbances. 38 39 40 41 ‘I keep really calm outwardly. I don’t even notice anything in the mirror except that I am a 42 little pale. My outward expression does not reflect my inner troubles, so I am very 43 on October 2, 2021 by guest. Protected copyright. 44 disappointed.’ (Participant H, F/50) 45 46 47 ‘I can’t help being ineffective in the afternoon because I am unable to focus. Therefore, I find 48 49 caffeine drinks such as coffee and green tea helpful initially, but later I become so used to them 50 that they keep me awake at night, hence the vicious cycle of fatigue.’ (Participant B, F/29) 51 52 53 54 Additionally, participants were passive in their family and social lives because they were always 55 tired. The interviewees considered daily activities, such as eating out with their families, outdoor 56 57 activities, and travel, to be considerable burdens and increasingly avoided their previously 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 12 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 enjoyed hobbies, such as exercise, which worried their families and depressed the family 4 5 atmosphere. In their social lives, they tried to abstain from interpersonal relations in order to rest. 6 7 As a result, the variety of their daily activities shrank and became monotonous. 8 9 10 ‘Now, I continuously reduce social activities. Though I had promised to talk about business to 11 someone, I just wanted him to quit and leave. I was not supposed to say “Let’s quit because I 12 13 am tired.” Then, after the counselling session, I collapsed.’ (Participant D, M/64) 14 15 For peer review only 16 3. Selection of TKM treatment 17 18 1) Reasons why patients sought traditional Korean medical treatment 19 20 Before receiving TKM treatment, some participants visited western medical hospitals to treat 21 their constant fatigue but did not experience any healing effect or obtain a particular diagnosis. To 22 23 avoid continuously difficult situations, they tried TKM treatments. 24

25 26 ‘The reason why I decided to use oriental medical treatment was because western medical 27 28 hospitals didn’t recognise my symptoms, therefore I would not be cured.’ (Participant G, M/51) 29 30 31 Some participants received TKM treatment upon the recommendation of family or colleagues, 32 33 who introduced them to famous TKM clinics or TKM treatments. 34 35 http://bmjopen.bmj.com/ 36 ‘My daughters encouraged me to take a traditional Korean medication because I was weak.’ 37 (Participant O, F/59) 38 39 40 41 ‘People said that I should visit some place to be treated for fatigue because I should be in good 42 condition. As for traditional Korean medication treatments, large centres are supposed to treat 43 on October 2, 2021 by guest. Protected copyright. 44 only one disease particularly well. I frequented many TKM clinics.’ (Participant D, M/64) 45 46 47 Most of the participants believed that western medical doctors treat clearly identified diseases, 48 49 while TKM doctors restore patients’ physical functions to produce a harmonious condition. They 50 preferred TKM treatments because western medical treatments may have severe side effects, 51 52 while TKM does not have a strong influence on the body and has few side effects. Most of the 53 54 participants believed that TKM comprises a radical treatment that restores their weak body by 55 improving their constitution or increasing their immunity. Additionally, the participants believed 56 57 that TKM would be effective in the long term if they endured the relatively long treatment time 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 13 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 while their symptoms got better or remained. 4 5 6 7 ‘Western medicine targets only short-term effects, but I certainly feel little burden with 8 traditional Korean medicine, even though a longer treatment is necessary compared to that of 9 10 western medicine.’ (Participant D, M/64) 11

12 13 2) Effects of traditional Korean medical treatment 14 15 Most of the For participants peer took herbal medications review to restore theironly fitness or to relieve their 16 symptoms of fatigue. Most of the participants felt improved; their fatigue-related symptoms were 17 18 relieved, and they felt more comfortable psychologically. Some participants relied more on TKM 19 20 treatments because they enjoyed smelling herbal medications and felt that their condition 21 improved when receiving acupuncture. Some of the participants reported that they experienced 22 23 more of an effect on their symptoms when they consulted traditional Korean medical doctors and 24 received physical and relaxation therapies. 25 26 27 28 ‘After receiving acupuncture twice a week along with traditional Korean medications, I am 29 now almost completely restored so that I can engage in exercise activities.’ (Participant J, F/35) 30 31 32 33 ‘Before regularly visiting a traditional Korean medical centre, I suffered from headaches 34 almost every two days. Thus, headache medications were my best friends; however, I have not 35 http://bmjopen.bmj.com/ 36 had to take them since visiting the traditional Korean medical centre.’ (Participant I, M/28) 37

38 39 The participants reported that they were able to bear the unpleasant taste of traditional Korean 40 41 medications and the inconvenience of their administration for the sake of their treatment. 42 Additionally, they carried out a detailed self-evaluation process regarding taking traditional 43 on October 2, 2021 by guest. Protected copyright. 44 Korean medications. They believed that traditional Korean medications are effective only when 45 46 taken early and that the effects of these medications might occur later rather than earlier because 47 they are restorative medications rather than cures. Additionally, the participants believed that 48 49 traditional Korean medications should be taken periodically in the long term because they exert 50 effects when taken but that they are ineffective or have reduced effects when not taken. 51 52 53 54 ‘It seems that traditional Korean herbal medications have good effects in the early phase of a 55 disease. It seems that their effects are better when I happen to take them in the early stages. 56 57 Then, symptoms don’t worsen. What I feel when taking traditional Korean medications 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 14 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 periodically is that I don’t have any difficult feelings after taking them for approximately two or 4 5 three weeks; they don’t cure me in two to three days, as when I take western medications.’ 6 7 (Participant E, F/26) 8 9 10 However, not every participant experienced these effects of traditional Korean medicine 11 treatments. Some participants were not convinced of their claimed effects or reported 12 13 experiencing no effects. 14 15 For peer review only 16 ‘Because I was still too tired, I never thought they had any effects.’ (Participant G, M/51) 17 18 19 20 4. Recognition of TKM 21 22 23 1) The traditional Korean medical perspective of fatigue 24 Most of the participants were satisfied with the traditional Korean medical approach, in which 25 26 doctors treat fatigue as a disease, provide positive counselling, and write a prescription for the 27 28 symptoms. TKM doctors account for the causes of fatigue from the perspective of TKM and write 29 individually tailored prescriptions. 30 31 32 33 ‘Professor Son said that fatigue is also an illness. Fatigue is also an illness. He classified it as a 34 type of disease.’ (Participant F, M/54) 35 http://bmjopen.bmj.com/ 36 37 The participants tended to have more confidence in TKM if they were unsatisfied with the 38 39 conventional medical doctors’ diagnoses. Medical doctors are not interested in fatigue patients 40 41 because western medicine does not acknowledge chronic fatigue as a disease; it offers treatment 42 only when there is a precise diagnosis made based on an examination. It was recommended by 43 on October 2, 2021 by guest. Protected copyright. 44 western medical doctors that the participants receive a short-term treatment to relieve symptoms 45 46 or improve their life habits. In particular, they expressed disappointment because they felt that 47 their symptoms were not properly understood by western medical doctors. 48 49 50 ‘Western medicine uses only certain results from examinations such as blood tests and X-ray 51 52 scans to treat patients. I could not receive any treatment when my symptoms were outside of 53 54 those results, and there are few treatments in western medicine when I am sick and suffer from 55 pain.’ (Participant J, F/34) 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 15 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 ‘Western medical doctors said there was nothing special, though I felt I was dying. I felt pain 4 5 here and there and when I went to visit them because of my illness, I felt crazy when they said I 6 7 was “OK”.’ (Participant N, F/54) 8 9 10 2) Relationship with traditional Korean medical doctors 11 The participants felt comfortable with traditional Korean doctors who understood their pain and 12 13 listened to their concerns. The participants reported that during consultations, TKM doctors 14 15 performed specificFor physical peer examinations reviewincluding checking their only pulse before explaining to the 16 patient the condition of their body and their disease state. The participants felt that they could 17 18 freely ask questions of the TKM doctors. Some participants reported that they did not spare 19 20 medical expenses because they felt TKM doctors dealt not only with their illness but also their 21 psychological state. 22 23 24 ‘I am much more familiar with traditional Korean medical doctors. I can get close to them, 25 26 feeling no distance between us, so I can say anything and feel they will listen to anything I say. 27 28 Usually, when you have something to ask, you cannot say anything for fear of what the western 29 medical doctor will say.’ (Participant M, F/64) 30 31 32 33 ‘When visiting a traditional Korean medical clinic, I have a doctor examining my pulse, and I 34 listen to everything the doctor is saying. I consult him to be informed of what I’ve been 35 http://bmjopen.bmj.com/ 36 ignorant of. When the professor says it will be better in this way, I am convinced and come to 37 know what I have been ignorant of. Additionally, it prevents illness.’ (Participant L, F/59) 38 39 40 41 3) Limitations of traditional Korean medical treatment 42 Because the main treatment for chronic fatigue involves taking traditional Korean medicine, the 43 on October 2, 2021 by guest. Protected copyright. 44 participants felt more economic burden with TKM than with western medicine. Furthermore, 45 46 their economic burden increases because the National Health Insurance does not cover TKM; the 47 non-establishment of the charge system in TKM has been a cause for shock with regard to 48 49 treatment expenses. 50

51 52 ‘You know health insurance does not cover TKM. The cost is 70,000~80,000 KRW (62~70 US 53 54 dollars) per visit. It takes 150,000 KRW (132 US dollars) to visit a clinic twice a week. In 55 addition, as for medications, you should expect to pay 500,000~600,000 KRW (440~528 US 56 57 dollars) for two weeks’ doses. Therefore, you will spend 1,200,000~1,300,000 KRW (1055~1143 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 16 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 US dollars). Consequently, the poor cannot afford it. As a matter of fact, the government 4 5 should provide welfare for this and not for useless things.’ (Participant D, M/64) 6 7 8 Participants reported that TKM is problematic and that they encounter difficulties in taking care 9 10 of their oral medications over the long period of treatment. They also noted that there are 11 limitations in fully relying on TKM, as its principles and mechanisms of treatment are not 12 13 standardised and its treatment effects are vague. Additionally, they suggested that it is necessary 14 15 to explore methodsFor of treatment peer in areas reviewwhere western medicine only cannot provide cures and to 16 improve medical services that are easily accessed by all socioeconomic groups, as in the case of 17 18 western medicine. 19 20 21 ‘They can standardise TKM by clearing up vague and equivocal parts given that once upon a 22 23 time, Sir Heo Jun had established a system during the Joseon Dynasty. It is ridiculous for 24 modern people to say that they cannot provide standardised treatments. They pull tricks to do 25 26 things on their own. They never consider things from the perspective of consumers.’ 27 28 (Participant G, M/51) 29 30 31 5. Daily life care along with fatigue 32 33 34 The participants believed that they needed to manage their health care on their own to lead a 35 http://bmjopen.bmj.com/ 36 harmonious life with fatigue, as fatigue is a disease that they cannot help living with. The 37 participants recognised the limitations of TKM and were therefore proactively trying to take care 38 39 of their health so that they could prevent the vicious cycle of fatigue by maintaining their 40 41 improved condition after treatment. 42 43 on October 2, 2021 by guest. Protected copyright. 44 ‘I admit fatigue will live long; that is to say, it is a partner, a familiar partner. Should I say it’s 45 46 like sleeping with the enemy? As you know, it is a thing that you cannot help being with though 47 you hate it and want to get rid of it. It feels like 20~30 years of marriage or a mom and dad-like 48 49 feeling. Though I hate it, I can’t help it as I have been cursed with fatigue. I feel like I should 50 negotiate with it during my life.’ (Participant E, F/26) 51 52 53 54 ‘I get better if I am treated. I’ve felt that I should make efforts to change my life habits by not 55 being dependent solely on the treatment. I should be engaged in self-management in order to 56 57 avoid such a degree of chronic fatigue.’ (Participant J, F/35) 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 17 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 The participants made efforts to have a positive attitude towards life, to practice good health care 6 7 on their own and to be engaged in more positive self-management in terms of stress management, 8 exercise, swimming, meditation, etc. Most of them found pleasure in their mind and tried to be 9 10 grateful for life. Additionally, they made meditation a part of their life and controlled their 11 amount of exercise in consideration of their condition. 12 13 14 15 ‘Now, I will liveFor in pleasure. peer It seems that review it is good for my health only if I am pleased.’ (Participant 16 H, F/50) 17 18 19 20 ‘As I get severely tired, I consider it when I exercise. So, I will exercise three times when I used 21 to do it 5 times before. I quit when I feel tired. That way, I expect that I will get better.’ 22 23 (Participate G, M/51) 24 25 26 27 28 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 18 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Discussion 4 5 We found that patients with chronic fatigue believed that the development of their illness was due 6 7 to physical degradation caused by underlying diseases, the aging process or introverted personal 8 characteristics. They experienced physical and psychological symptoms associated with fatigue 9 10 that resulted in severe difficulties in relation to their daily routine activities. The motivation for 11 choosing TKM was dissatisfaction with conventional medicine and previous positive experiences 12 13 with TKM treatment of the patients themselves or their caregivers. During TKM treatment, 14 15 patients foundFor that TKM practitionerspeer considered review fatigue to be a treatableonly illness, and patients felt 16 comfortable with the doctor-patient relationship in TKM practice. The economic burden and 17 18 scarcity of scientific evidence were regarded as limitations to the utilisation of TKM. Finally, 19 20 patients recognised their fatigue and took it to be a ‘familiar partner’ that lives with them for their 21 entire lifetime. 22 23 24 The strengths of this study are its exploration of the patients’ perception and experience of 25 26 chronic fatigue and the utilisation of TKM. Previous studies have reported that patients with 27 28 chronic fatigue tend to utilise complementary and alternative medicine (CAM) in Western 29 society8. According to a recent survey study, in Korea, many patients with chronic fatigue also 30 31 use non-conventional medical treatments4. However, this study discussed the perception of 32 33 fatigue in patients and their motivations regarding their selection of TKM to relieve their 34 symptoms. In our qualitative research, we first explored the perceptions and personal experiences 35 http://bmjopen.bmj.com/ 36 of TKM patients and tried to ascertain what they considered and expected when coping with 37 chronic fatigue. Second, the motivation for choosing alternative care in chronic fatigue patients 38 39 was observed in the Korean context. Although it is controversial, the main reasons for choosing 40 41 CAM practitioners are reported to be a dissatisfaction with conventional treatments and a 42 preference for the ideology of alternative therapies, which in Western societies represent a holistic 43 on October 2, 2021 by guest. Protected copyright. 44 attitude towards health care17 18. The motivation of Korean patients with chronic fatigue was 45 46 associated with noncompliance or discontent with conventional treatment, as is the case in 47 Western societies. Interestingly, patients had the belief that TKM has the benefit of improving 48 49 constitutional weakness, which was accepted as an imaginary pathology from which chronic 50 fatigue originates and is the reason why conventional medicine was not effective in improving 51 52 their symptoms. In addition, previous positive experiences with the use of TKM by patients or 53 54 their caregivers strengthened this belief. These concepts might be based on Korean-specific 55 health care ideals. In Korea, TKM is not merely an alternative medicine, it is a medical system 56 57 that has been practiced throughout Korean history and currently constitutes a major part of the 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 19 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 health care system, along with conventional medicine. Two independent educational and practice 4 5 systems exist based on exclusive license classifications in Korea19. Due to this clinical situation, 6 7 patients with chronic fatigue seem to visit TKM clinics not as a counterplan to conventional 8 medicine but as the optimal choice among the possible treatments. From this study, we also found 9 10 that the patient’s belief was strong enough to endure the long-term and sometimes painful 11 interventions such as burning injuries during TKM. This concept was similarly observed in our 12 13 previous qualitative research concerning patients’ experience of moxibustion for chronic knee 14 15 osteoarthritis;For even though peer moxibustion mayreview introduce severe only adverse events, including burn 16 wounds, patients continued the moxibustion with moderate to high intensity20. How beliefs 17 18 regarding TKM are formulated and reinforced in the Korean population needs to be examined in 19 20 future studies, alongside studies on the motivation for choosing TKM treatment and the 21 perceptions of TKM. 22 23 24 This study has limitations. Although interviews were conducted until the data reached saturation, 25 26 the generalisability of this study cannot be assured for several reasons. Patients who did not want 27 28 TKM treatment or dropped out during the treatment course may represent those with an opposing 29 perception to that of the pro-TKM patients. We included patients with chronic fatigue referred by 30 31 TKM doctors in this study, which might introduce a selection bias. TKM is mainly practiced in 32 33 Korea, so the study results need to be carefully interpreted in reference to patients with different 34 characteristics such as racial background, educational or social status. Another limitation is the 35 http://bmjopen.bmj.com/ 36 obscurity of the definition of the study population. Chronic fatigue can originate from diverse 37 mental or physical conditions21. The severity and importance of symptoms and their impact on the 38 39 daily lives of patients are not the same for all patients. In this study, we intended to explore the 40 41 perception and motivation of patients using TKM as a basic step towards understanding TKM 42 users. Because of the difficulty in recruiting patients who had both fatigue lasting more than 6 43 on October 2, 2021 by guest. Protected copyright. 44 months and experience with TKM therapies, we used a strategy that adopted a broader disease 45 46 definition of chronic fatigue. Our study included more female patients than males, which might 47 affect the study result. Future research conducting interviews on TKM users with more focused 48 49 and balanced patient groups, including fatigue in cancer or endocrine disease, may highlight the 50 value of TKM in different contexts. 51 52 53 54 Previous reports on the usage of complementary and alternative medicine (CAM) suggested that 55 patients with chronic fatigue tend to seek CAM interventions more often than the non-fatigue 56 57 group22. In our study, we found that patients with chronic fatigue tend to use TKM as an 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 20 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 alternative plan for coping with their symptoms. In addition, it is generally accepted that the 4 5 purpose of seeking CAM treatment is related to dissatisfaction with conventional medicine23. Our 6 7 study findings also support this assumption of patients’ attitudes towards CAM therapy. 8 9 10 We found that patients recognised chronic fatigue as an important symptom causing severe 11 disability in their daily lives, and they sought appropriate treatments. However, they thought that 12 13 physicians tended to recognise fatigue as a minor problem that did not warrant aggressive 14 24 15 assessment andFor interventions peer commensurate review with patients’ requests only. In allopathic medicine, only 16 a partial solution is offered as a treatment for chronic fatigue, as pathophysiological mechanisms 17 18 have not yet been established in many cases21. Considering the gap between patients’ expectations 19 20 and clinical practice, it is no surprise that patients in Korea frequently use alternative methods of 21 coping with their symptoms12. Health care policy administrators need to keep in mind that chronic 22 23 fatigue may be a serious health problem and solutions should be proposed based on the patient’s 24 perception of their condition. In addition, TCM interventions including herbal drugs, acupuncture, 25 26 moxibustion and qigong therapy are likely to be effective in chronic fatigue, although evidence is 27 25 28 currently limited due to methodological flaws of the clinical trials . Similar clinical effectiveness 29 can be expected in TKM, which is a type of traditional East Asian medicine. If evidence 30 31 regarding the effectiveness of TKM interventions for chronic fatigue were to be provided by 32 33 rigorous studies, TKM might be accepted as an appropriate therapy to alleviate symptoms related 34 to chronic fatigue. 35 http://bmjopen.bmj.com/ 36 37 Author contribution statement 38 39 HMS, EYP, DHK, EJK, MSS and THK conceived and participated in the design of this research. 40 41 HMS, EYP, DHK and EJK conducted the interviews and analysed the data. HMS, EYP, DHK, 42 EJK, MSS and THK wrote the draft of this manuscript. 43 on October 2, 2021 by guest. Protected copyright. 44 45 46 Competing interest 47 None. 48 49 50 Funding 51 52 This study was supported by Korea Institute of Oriental medicine (K12010). 53 54 55 Data sharing 56 57 No additional data available 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 21 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 References 6 7 1. Klimas NG, Broderick G, Fletcher MA. Biomarkers for chronic fatigue. Brain, behavior, and immunity 8 2012;26(8):1202-10. 9 2. Jason LA, Evans M, Brown M, et al. What is fatigue? Pathological and nonpathological fatigue. PM & 10 R : the journal of injury, function, and rehabilitation 2010;2(5):327-31. 11 3. Afari N, Buchwald D. Chronic fatigue syndrome: a review. The American journal of psychiatry 12 2003;160(2):221-36. 13 4. Kim CH, Shin HC, Won CW. Prevalence of chronic fatigue and chronic fatigue syndrome in Korea: 14 community-based primary care study. Journal of Korean medical science 2005;20(4):529-34. 15 5. Shin D. [TrendsFor in research peer on the history review of medicine in Korea only before the modern era]. Ui sahak 16 2010;19(1):1-43. 17 6. Yi C-m. Longevity & life preservation in oriental medicine: Kyung Hee University Press, 1996. 18 7. UNESCO. Donguibogam: Principles and Practice of Eastern Medicine: 19 http://portal.unesco.org/ci/en/files/27075/12133693253Korea_Donguibogam.pdf/Korea%2BDong 20 uibogam.pdf. , 2010. 21 8. Alraek T, Lee MS, Choi TY, et al. Complementary and alternative medicine for patients with chronic 22 fatigue syndrome: a systematic review. BMC complementary and alternative medicine 2011;11:87. 23 9. Yin C, Park H-J, Chae Y, et al. Korean acupuncture: the individualized and practical acupuncture. 24 Neurological research 2007;29(Supplement-1):10-15. 25 10. Adams D, Wu T, Yang X, et al. Traditional Chinese medicinal herbs for the treatment of idiopathic 26 chronic fatigue and chronic fatigue syndrome. The Cochrane database of systematic reviews 27 2009(4):CD006348. 28 11. Wang T, Zhang Q, Xue X, et al. A systematic review of acupuncture and moxibustion treatment for 29 chronic fatigue syndrome in China. The American journal of Chinese medicine 2008;36(1):1-24. 30 12. Choi DH KC, Shin HC, Park YW, Sung EJ, Lee KH. Patterns of complementary and alternative 31 medicine therapies in patients with chronic fatigue or pain. Korean J Fam Med 2009;14:182-89. 32 13. Park H-L, Lee H-S, Shin B-C, et al. Traditional medicine in China, Korea, and Japan: a brief 33 introduction and comparison. Evidence-Based Complementary and Alternative Medicine 34 2012;2012. 35 14. Yiu Y, Qiu M. [A preliminary epidemiological study and discussion on traditional Chinese medicine http://bmjopen.bmj.com/ 36 pathogenesis of chronic fatigue syndrome in Hong Kong]. Zhong xi yi jie he xue bao= Journal of 37 Chinese integrative medicine 2005;3(5):359-62. 38 15. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qualitative health research 39 2005;15(9):1277-88. 40 16. Sandelowski M. The problem of rigor in qualitative research. ANS Advances in nursing science 41 1986;8(3):27-37. 17. Astin JA. Why patients use alternative medicine: results of a national study. JAMA : the journal of the 42 American Medical Association 1998;279(19):1548-53. 43 on October 2, 2021 by guest. Protected copyright. 18. Kelner M, Wellman B. Health care and consumer choice: medical and alternative therapies. Soc Sci 44 Med 1997;45(2):203-12. 45 19. Ryu J, Choi B, Lim B, et al. Medical practices and attitudes of dual-licensed medical doctors in Korea. 46 Evidence-based complementary and alternative medicine : eCAM 2013;2013:183643. 47 20. Son HM, Kim DH, Kim E, et al. A qualitative study of the experiences of patients with knee 48 osteoarthritis undergoing moxibustion. Acupuncture in medicine : journal of the British Medical 49 Acupuncture Society 2013;31(1):39-44. 50 21. Finsterer J, Mahjoub SZ. Fatigue in Healthy and Diseased Individuals. The American journal of hospice 51 & palliative care 2013. 52 22. Jones JF, Maloney EM, Boneva RS, et al. Complementary and alternative medical therapy utilization by 53 people with chronic fatiguing illnesses in the United States. BMC complementary and alternative 54 medicine 2007;7(1):12. 55 23. McFadden KL, Hernández TD, Ito TA. Attitudes toward complementary and alternative medicine 56 influence its use. Explore: The Journal of Science and Healing 2010;6(6):380-88. 57 24. Cho HJ, Menezes PR, Hotopf M, et al. Comparative epidemiology of chronic fatigue syndrome in 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 22 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Brazilian and British primary care: prevalence and recognition. The British journal of psychiatry : 4 the journal of mental science 2009;194(2):117-22. 5 25. Chen R, Moriya J, Yamakawa J-i, et al. Traditional Chinese medicine for chronic fatigue syndrome. 6 Evidence-Based Complementary and Alternative Medicine 2010;7(1):3-10. 7 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 23 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Table 1. Characteristics of interviewees 4 5 Participant’s Sex Underlying Duration Chief Experience of 6 code diseases of illness complaints TKM* 7 (year) treatments 8 A F Thyroid gland 3 Migraine, Herbal 9 10 cancer dyspepsia, medicine and 11 postoperative short-term acupuncture 12 status/ memory loss 13 cholecystectomy 14 B F None 5 Headache, Herbal 15 For peer reviewdyspepsia, only medicine and 16 neck and acupuncture 17 shoulder pain, 18 insomnia 19 C F Hypertension 10 Leg Herbal 20 weakness, medicine, 21 walking acupuncture 22 23 difficulty, and 24 headache moxibustion 25 D M Angina pectoris 40 Headache, Herbal 26 wasting medicine 27 E F Anaemia 9 Blurred Herbal 28 vision, medicine 29 periorbital 30 tenderness, 31 neck stiffness, 32 nausea, 33 headache 34

F M Chronic 5 Heaviness in Herbal http://bmjopen.bmj.com/ 35 36 bronchitis the morning, medicine and 37 wasting moxibustion 38 G M None 3 Nasal Herbal 39 sensitivity to medicine and 40 smoke acupuncture 41 pollution; 42 headache;

43 difficulty on October 2, 2021 by guest. Protected copyright. 44 speaking 45 H F Uterine Myoma 10 Headache, Herbal 46 wasting medicine, 47 moxibustion 48 49 and cupping 50 therapy 51 I M Pyelonephritis 10 Headache, Herbal 52 palpitation, medicine, 53 tremor of acupuncture, 54 hands and feet moxibustion 55 and cupping 56 therapy 57 J F Diabetes/ 5 Difficulty Herbal 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 24 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Spondylosis waking up in medicine, 4 the morning, moxibustion 5 6 lethargy, and cupping 7 sweating therapy 8 during sleep, 9 anorexia 10 K M Allergic rhinitis 11 Lethargy Herbal 11 medicine 12 L F Gastritis 15 Loss of Herbal 13 energy medicine, 14 acupuncture, 15 For peer review onlymoxibustion 16 and cupping 17 therapy 18 19 M F Gastric cancer 3 Blurred Herbal 20 postoperative vision, loss of medicine, 21 status energy acupuncture 22 and 23 moxibustion 24 N F Chronic gastritis 1 Hearing Herbal 25 disturbance, medicine, 26 eyestrain, acupuncture 27 stomatitis, and cupping 28 difficulty therapy 29 waking up 30 O F None 0.6 Feeling heavy Herbal 31 in the head, medicine and 32 33 dizziness, loss moxibustion 34 of energy, 35 feeling of http://bmjopen.bmj.com/ 36 shoulder 37 heaviness 38 *TKM: traditional Korean medicine 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 25 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Table 2. Interview Schedule 6 7 8 Interview Additional interview 9 Participant’s 10 code Sex 11 Duration Duration Frequency Methods Frequency 12 (min) (min) 13 14 15 A For peerF 1 review95 only 16 17 B F 1 60 Telephone 1 15 18 19 C F 1 70 20 D M 120 21 22 E F 90 23 24 F M 1 60 25 26 G M 1 60 27 28 H F 1 90 29 I M 1 60 30 31 J F 1 100 Telephone 1 15 32 33 K M 1 60 34 35 L F 1 80 http://bmjopen.bmj.com/ 36 37 M F 1 90 38 39 N F 1 100 40 O F 1 50 Telephone 1 20 41 42 43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 26 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Table 3. Generation and elaboration of categories, subcategories, and concept 6 7 Category Subcategory Concept 8 9 Causes of fatigue Physical factors Innate weakness 10 11 Aging 12 Underlying disease 13 14 Overwork 15 For peer review only 16 Negligence of health care 17 Personal character Sensitivity 18 19 Full of worry 20 Introverted character 21 22 Passive character 23 24 Compulsive and principled character 25 Symptoms of Physical symptoms Headaches 26 27 fatigue Heavy neck and shoulder 28 29 Sleep disturbances 30 Lack of attention 31 32 Memory deficits 33 Difficulty getting up in the morning 34 35 Change of eating habit http://bmjopen.bmj.com/ 36 37 Psychological symptoms Sensitive reactions 38 Lack of motivation 39 40 Lethargy 41 42 Lower self-esteem

43 Anxiety on October 2, 2021 by guest. Protected copyright. 44 45 Depression 46 Changes in everyday life 47 Lack of understanding of fatigue 48 symptoms by others 49 50 Low performance in their workplaces 51 Passive in family and social life 52 53 Abstain from interpersonal relations 54 55 Selection of Reasons Persistent fatigue symptom in spite of 56 traditional Korean getting different treatment 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 27 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 medical treatment Not obtain a particular diagnosis from 6 7 western medicine 8 Recommendation for using TKM from 9 10 family and colleagues 11 12 Positive effects Relieve of fatigue symptom related 13 symptoms 14 15 For peer reviewRestore their only fitness 16 Fewer side effects 17 18 Feel more comfortable psychologically 19 20 Negative effect Inconvenience of using TKM: medication 21 Inconsistent therapeutic effect of TKM 22 23 Recognition of TKM perspective about Treating fatigue as a disease 24 25 traditional Korean fatigue Positive approach to the patient 26 medicine Individually tailored prescriptions 27 28 Relationship with Feel more comfortable with TKM doctors 29 traditional Korean medical 30 TKM doctor as a good listener 31 doctors 32 Limitations of using TKM 33 Economic burden 34 Lack of establishment for the cost charge 35 http://bmjopen.bmj.com/ 36 system: medical insurance 37 Requiring long term period for treatment: 38 39 taking medication 40 41 Non-standardised treatment 42 Vague treatment effects

43 on October 2, 2021 by guest. Protected copyright. 44 Difficulty of treatment compliance 45 46 Daily Life Care To lead a harmonious life Recognise the limitations of TKM 47 along with Fatigue with fatigue Recognise the need for health care on their 48 49 own 50 More positive self-management: exercise, 51 52 swimming, meditation, listening music, 53 54 stress reduction 55 Positive attitude towards life 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 28 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Figure 1. Relationships between categories of usage of traditional Korean medicine (TKM) in 4 patients with chronic fatigue (Coding tree) 5 6 7 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 29 of 30 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 Figure 1 33 254x190mm (72 x 72 DPI) 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 30 of 30 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 Standards for Reporting Qualitative Research (SRQR) checklist 5 6 7 No Topic Item 8 S1 Title P1 9 10 S2 Abstract P2 11 S3 Problem formulation P5 12 S4 Purpose or research question P5 13 14 S5 Qualitative approach and P6 15 For peerresearch paradigmreview only 16 17 S6 Researcher characteristics and P7 18 reflexivity 19 20 S7 Context P6 21 S8 Sampling strategy P6 22 S9 Ethical issues pertaining to P6-7 23 24 human subjects 25 S10 Data collection methods P6 26 27 S11 Data collection instruments P6 28 and technologies 29 S12 Units of study P8, P23 30 31 S13 Data processing P6 32 S14 Data analysis P6 33 34 S15 Techniques to enhance P7 35 trustworthiness http://bmjopen.bmj.com/ 36 37 S16 Synthesis and interpretation P8-P17 38 S17 Links to empirical data P8-P17 39 S18 Integration with prior work, P18 40 41 implications, transferability, 42 and contribution(s) to the field

43 on October 2, 2021 by guest. Protected copyright. 44 S19 Limitations P19 45 S20 Conflicts of interest P20 46 47 S21 Funding P20 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from

Experiences with, perceptions of and attitudes toward traditional Korean medicine (TKM) in patients with chronic fatigue: a qualitative, one-on-one, in-depth interview study

For peer review only Journal: BMJ Open

Manuscript ID: bmjopen-2014-006178.R2

Article Type: Research

Date Submitted by the Author: 05-Aug-2015

Complete List of Authors: Son, Haeng-Mi; Department of Nursing, University of Ulsan Park, Eun Young; College of Nursing, Gachon University Kim, Duck Hee; Department of Nursing, Woosuk University Kim, Eunjeong; Department of Nursing, Daedong College Shin, Mi-Suk; Department of nursing, Daejeon University Kim, Tae-Hun; Korean Medicine Clinical Trial Center, Korean Medicine Hospital, Kyung Hee University

Primary Subject Complementary medicine Heading:

Secondary Subject Heading: Qualitative research

COMPLEMENTARY MEDICINE, QUALITATIVE RESEARCH, Adult palliative Keywords:

care < PALLIATIVE CARE http://bmjopen.bmj.com/

on October 2, 2021 by guest. Protected copyright.

For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 1 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 MS to BMJ Open 4 5 6 7 8 Experiences with, perceptions of and attitudes toward traditional Korean medicine (TKM) in patients with 9 10 chronic fatigue: a qualitative, one-on-one, in-depth interview study 11 12 13 14 Haeng-Mi Son1, Park, Eun Young2, Kim, Duck Hee3, Kim, Eunjeong4, Mi-Suk Shin5, Tae-Hun Kim6,* 15 For peer review only 16 17 18 1 19 Department of Nursing, University of Ulsan, Ulsan, Korea

20 2 21 College of Nursing, Gachon University, Incheon, Korea 22 3 23 Department of Nursing, Woosuk University, Wanju, Korea 24 25 4 Department of Nursing, Daedong College, Busan, Korea 26 27 5 Department of nursing, Daejeon University, Daejeon, Korea 28 29 6 Korean Medicine Clinical Trial Center, Korean Medicine Hospital, Kyung Hee University, Seoul, South Korea 30 31

32 33 34 *Corresponding author 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 2 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Abstract 4 5 6 Objectives 7 8 To explore chronic fatigue patients’ perceptions of and experiences with traditional Korean 9 10 medicine (TKM) and their motivation for choosing TKM 11 12 Design 13 14 Qualitative, one-on-one, in-depth interview study 15 For peer review only 16 Setting 17 18 19 Primary TKM hospitals in Seoul, Inchon and Daejeon, South Korea 20 21 Results 22 23 Fifteen chronic fatigue patents were interviewed in this study. Patients with chronic fatigue 24 25 experienced physical and psychological symptoms that resulted in severe difficulties associated 26 27 with routine daily activities. The motivations for choosing TKM were primarily dissatisfaction 28 29 with conventional medicine and previous positive experiences with TKM. While undergoing 30 31 TKM treatment, patients found that TKM practitioners considered fatigue to be a treatable illness, 32 33 34 and patients felt comfortable with the doctor-patient relationship in TKM. 35 http://bmjopen.bmj.com/ 36 Conclusion 37 38 Health care providers need to be concerned about the symptoms of chronic fatigue to a degree 39 40 that is in line with the patient’s own perceptions. Korean patients with chronic fatigue choose 41 42 TKM as an alternative to fulfil their long-term needs that were unmet by conventional medicine, 43 on October 2, 2021 by guest. Protected copyright. 44 and they are considerably positively influenced by TKM. TKM may present a possible therapy to 45 46 47 alleviate symptoms of diseases that conventional medicine does not address and is an approach 48 49 that has a considerable effect in Korean patients. 50 51 Keywords 52 53 Chronic fatigue, traditional Korean medicine, TKM, qualitative research 54 55 56 57 58 Article summary 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 3 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Strengths and limitations of this study 4 5 o 6 For our one-on-one, in-depth interviews, we recruited interviewees through referrals from TKM physicians 7 8 and used a snowball sampling method, which potentially introduced a bias, favouring interviewees with 9 10 positive opinions of TKM treatments. 11 12 o The limitation is that the study findings can be only applied to the Korean population that uses or is at least 13 14 familiar with TKM. 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 4 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Introduction 4 5 6 7 8 Fatigue is generally accepted to be a combination of symptoms that is an acute response to 9 10 physical or mental exertion and is characterised by recovery after rest. When fatigue symptoms 11 12 continue for more than six months, it is defined as a chronic condition1. Various types of illnesses 13 14 are associated with fatigue2. However, many patients who complain of severe disability in their 15 For peer review only 16 daily lives have fatigue symptoms that cannot be explained by pathological causes3. Chronic 17 18 19 fatigue syndrome, a condition that is defined by a period of more than six months of continuous 20 21 fatigue without the presence of a specific underlying disease, is prevalent among the general 22 23 population in Korea. The prevalence is estimated to be 0.6 to 2.0 %, which is quite similar to that 24 25 found in Western societies (0.5 to 2.5 %)4. 26 27 28 29 Traditional Korean medicine (TKM) is a medical practice system included in the category of 30 31 orthodox medicine in Korea. TKM interventions consist of herbal medicine, acupuncture, 32 33 34 moxibustion, and cupping therapies, similar to those of traditional Chinese medicine. However, 35 http://bmjopen.bmj.com/ 36 TKM has developed unique medical theories, including Sasang constitutional medicine and the 37 38 syndrome differentiation method based on Dongeuibogam, and styles of practice, including the 39 40 Saam acupuncture method, that have been influenced by the medical practices in other East Asian 41 42 countries5. Sasang constitutional medicine explains physiology and pathology based on the 43 on October 2, 2021 by guest. Protected copyright. 44 different types of inherited constitutions of an individual person. One patient’s constitution, 45 46 47 whether it be of the Taeyang, Taeeum, Soyang or Soeum type, does not change during their 48 49 lifetime, and symptom patterns can be different based on specific constitutions, even though the 50 51 pathological causes do not differ between patients. In this sense, treatment strategies are 52 53 preferentially focused on the patient’s specific constitution, not on the pathology, which is distinct 54 55 from the practices of TCM6. Dongeuibogam, written by Heo, Ju in 1610, is considered to be the 56 57 canonical work on the clinical practice of TKM in Korea7. The system of diagnosis and modality 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 5 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 for treatment in Dongeuibogam is constructed based on the specific Korean context. For example, 4 5 6 all of the names of medicinal herbs were written in Hangul, the Korean alphabet, to make them 7 8 easier to understand. In the book, substitutes for some herbs that do not naturally grow on the 9 10 Korean peninsula are suggested. Saam acupuncture is based on a principle of the selection of 11 12 acupuncture points and stimulating methods of needles based on TKM theory. As with Sasang 13 14 constitutional medicine, Saam acupuncture also suggests an individualised and tailored 15 For peer review only 16 therapeutic strategy. Saam acupuncture adopted TCM theories such as the five elements and their 17 18 19 interactions, but detailed the features of acupuncture practice are quite different from those of

20 8 9 21 TCM . 22 23 24 25 Systematic reviews (SRs) on the effectiveness of complementary and alternative medicine 26 27 (CAM) interventions including acupuncture, moxibustion and herbal medicines suggest that these 28 29 alternative therapies may be effective in improving symptoms related to chronic fatigue8 10 11. In 30 31 addition, recent survey results suggest that many Korean patients have had experience with TKM 32

33 12 34 for the treatment of chronic fatigue . However, there is no research available examining why 35 http://bmjopen.bmj.com/ 36 patients prefer and select CAM interventions, what they experience during these treatment 37 38 sessions, or how they are affected at the end of the sessions. The purpose of this qualitative study 39 40 was to assess the personal experiences of chronic fatigue patients administered TKM treatments. 41 42 We tried to understand the patients’ experience of their symptoms, the physical, psychological 43 on October 2, 2021 by guest. Protected copyright. 44 and social influences related to chronic fatigue, their motivation for choosing TKM and their 45 46 47 perceptions of TKM interventions. 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 6 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Methods 4 5 6 Recruitment of interviewees 7 Participants who visited TKM hospitals with complaints of continuous or repetitive tiredness 8 9 during the preceding six or more months were included in the pool of interview subjects. TKM 10 hospitals are specific medical institutions in Korea where qualified TKM doctors practice, using 11 12 medicinal herbs, acupuncture, moxibustion, cupping etc., based on TKM principles. Generally, 13 14 musculoskeletal disease is the most frequent reason for visiting TKM hospitals, and chronic 15 fatigue is alsoFor one of the majorpeer reasons for review visiting TKM hospitals only13. Participants were primarily 16 17 recruited through referrals from physicians in local TKM hospitals in Seoul, Inchon and Daejeon, 18 South Korea, from July to November 2012. In addition, acquaintances who were recommended 19 20 by participants were also included in interviews, if appropriate. Interviewees were recruited 21 22 thorough a snowball sampling method until the sample data were saturated. Research participants 23 participated on their own initiative, and no one refused to participate in the data collection of this 24 25 study. Fifteen chronic fatigue patents were interviewed for this study. Of the participants, twelve 26 27 had underlying diseases that might have been related to fatigue, three did not. Five patients were 28 male, and ten were female. The age distribution was as follows: three were in their 20s, two in 29 30 their 30s, one in their 40s, six in their 50s, and three in their 60s. As for the duration of the fatigue 31 symptoms, six had symptoms for ten or more years, four for five to nine years, four for one to 32 33 four years, and one for less than one year. All participants had previous experience with TKM 34 35 treatments, such as acupuncture, moxibustion, and cupping, as well as herbal medications (Table http://bmjopen.bmj.com/ 36 1). 37 38 39 40 41 42 Data Collection 43 Data collection was performed using one-on-one, in-depth interviews of participants. Among all on October 2, 2021 by guest. Protected copyright. 44 45 researchers, four researchers who are experts in data collection by conducting qualitative research 46 47 interview participated in interview process. For each interview, one single researcher conducted it 48 alone and every researcher did three to five individual interviews. The interviews were audio 49 50 recorded by the interviewers, and the contents were transcribed verbatim. The interview questions 51 52 comprised the main questions and any additional questions asked by the research team after 53 internal discussion. The main questions were open-ended, such as ‘Tell us about your experience 54 55 with traditional Korean medical treatment of chronic fatigue’. The time spent on each interview 56 was between one and two hours. Interviews were conducted in places where participants felt 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 7 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 comfortable to be interviewed, such as a quiet café, a hospital conference room or a participant’s 4 5 home. To clarify interview components that were unclear and to supplement the interview for 6 7 some participants (A, J, O), additional phone interviews were conducted (Table 2). The content of 8 the interviews was considered to be saturated when no novel content was obtained from 9 10 participants. Three part-time students worked on transcription of gathered interview data whereas 11 actual research interviewer confirmed the transcription contents in text. 12 13 14 15 Data AnalysisFor peer review only 16 Previous surveys on chronic fatigue syndrome only dealt with prevalence, physical and emotional 17 18 14 19 symptoms and diagnostic features from the TCM point of view . However, these studies did not 20 21 cover the patient’s experience and perception of the usage of TKM. Qualitative content analysis is 22 23 a research method used for the subjective interpretation of textual data through the process of 24 25 coding and the identification of themes. Qualitative content aAnalysis is a flexible and pragmatic 26 27 research method15 for conducting qualitative research without any philosophical presumptions, 28 29 using a specific qualitative research method. In this study, researchers applied qQualitative 30 31 cContent aAnalysis to understand the patient’s experience of suffering from chronic fatigue and 32 33 34 to understand the usefulness of TKM treatment without any philosophical presumptions of the 35 http://bmjopen.bmj.com/ 36 specific qualitative research methods. The goal of content analysis is to provide knowledge and 37 38 understanding of the phenomenon being studied.15 All of the four researchers who conducted 39 40 interviews had participated in the overall process of whole data analysis: first, each researcher 41 42 analyzed the transcription of gathered interview individually and after that they shared it with 43 on October 2, 2021 by guest. Protected copyright. 44 other researchers. After consecutive discussions for the reconciliation of their opinions, 45 46 47 researchers confirmed the concepts and generalized the data with categories. Data analysis was 48 49 performed by repeatedly reading all data, line by line, to achieve data immersion. Codes were 50 51 generated from the data and were sorted into categories and subcategories based on the level of 52 53 abstractness and how different codes were related and linked. Relationships were identified 54 55 through a comparison of the similarities and differences between the categories and subcategories. 56 57 We present concepts, subcategories, and categories in detail, as well as a coding tree (Table 3 and 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 8 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Figure 1). 4 5

6 7 Ethical considerations 8 9 This qualitative study was reviewed by the Oriental Hospital of Daejeon University Human 10 Research Ethics Committee in Korea (IRB approval number: DJOMC-94). The research team 11 12 received written informed consent from each of the participants after the purpose and methods of 13 14 the study were explained to them. Each participant had been introduced to the study by TKM 15 doctors fromFor the TKM peer hospitals and review was guaranteed self-determination, only anonymity, and 16 17 confidentiality. The participants were provided with incentives for their participation. 18

19 20 Study Rigour 21 22 To establish the rigour of this study, the research team considered the credibility, auditability, and 23 confirmability16 of each patient’s interview. In the process of extracting concepts and categories 24 25 from the data utilising a coding scheme, discussions were continued until an agreeable conclusion 26 27 was reached among the researchers regarding the further elaboration of the data analysis. For the 28 overall process of data gathering and data analysis, each researcher put their best efforts to avoid 29 30 bias and maintain bracketing by focusing on reflexive consideration. 31

32 33 The results of the study were shown to the participants to confirm the description of their 34 35 experiences. The contents of this study were translated into English by a bilingual translator with http://bmjopen.bmj.com/ 36 specific guidance from the research team, and all research members reviewed the translated 37 38 manuscript. 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 9 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Results 4 5 6 7 Fifteen chronic fatigue patents were interviewed in this study. Of the participants, twelve had 8 underlying diseases that might have been related to fatigue, three did not. Five patients were male, 9 10 and ten were female. The age distribution was as follows: three were in their 20s, two in their 30s, 11 one in their 40s, six in their 50s, and three in their 60s. As for the duration of fatigue symptoms, 12 13 six had symptoms for ten or more years, four for five to nine years, four for one to four years, and 14 15 one for less thanFor one year. peerAll participants reviewhad previous experience only with TKM treatments, such as 16 acupuncture, moxibustion, and cupping, as well as herbal medications (Table 1). 17 18 19 20 Patients with chronic fatigue experienced chronic symptoms due to physical factors and factors 21 that characteristically cause chronic fatigue. Participants were unable to conduct normal daily 22 23 activities due to their physical and psychological symptoms. When experiencing improvements in 24 their chronic fatigue symptoms after TKM treatment, participants recognised that TKM was more 25 26 appropriate than western medicine for treating chronic fatigue. By experiencing chronic fatigue, 27 28 participants realised the importance of the self-management of their health in their daily lives 29 (Figure 1). 30 31 32 33 1. Causes of fatigue 34 1) Physical factors 35 http://bmjopen.bmj.com/ 36 The interviewees generally recognised that their physical condition was related to innate 37 weakness, aging, and underlying disease as well as fatigue. However, some participants felt that 38 39 they did not pay much attention to their physical condition due to overconfidence in their health, 40 41 which might be attributed to their symptoms. Some participants engaged in an excessive amount 42 of exercise, while others noted that bad eating habits, such as frequently eating out or consuming 43 on October 2, 2021 by guest. Protected copyright. 44 ready-made foods, were related to fatigue. Additionally, participants thought that stress resulting 45 46 from excessive household chores or workloads was the cause of fatigue. 47 48 49 ‘Even though I managed to endure, when I was young I was always tired due to my feeble 50 constitution, which has been present ever since my childhood… now I have weakened and 51 52 therefore feel more tired and find it is more difficult to endure due to a lack of adaptability and 53 54 immunity.’ (Participant F, M/54) 55 56 57 2) Personalities 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 10 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Most of the participants found clues to the cause of their fatigue in their personal characteristics. 4 5 They reported that they were sensitive to everything, full of worry, introverted, and passive. Thus, 6 7 they claimed that mental fatigue originated largely from their situation and because they were not 8 able to express their thoughts and felt that they should conceal them. Moreover, some 9 10 interviewees had compulsive and self-restricting characteristics that made them follow strict 11 principles, placing a considerable burden on their daily lives. 12 13 14 15 ‘I admit that Forit is difficult peer to sleep when reviewI have some concerns, only because I am sensitive. When 16 my parents-in-law were staying with us, I often woke up in the middle of the night with 17 18 concerns about what I should serve them in the morning.’ (Participant C, F/66) 19 20 21 ‘As for my personality, I excessively care about what would normally be overlooked. That is to 22 23 say, I tend to keep my promises…if I make a promise, I do my best to the last drop of my blood.’ 24 (Participant H, F/50) 25 26 27 28 2. Symptoms of fatigue 29 1) Physical and psychological symptoms 30 31 The participants experienced physical and psychological fatigue symptoms. They complained of 32 33 physical symptoms such as headaches, sleep disturbances, attention and memory deficits, and 34 difficulty getting up in the morning. In addition, some of the participants indicated that they had a 35 http://bmjopen.bmj.com/ 36 depressed emotional state described as ‘difficulty saying even a word’, ‘difficulty breathing due 37 to severe headache’, ‘the feeling of being buried, due to a lack of vigour’, ‘feeling sluggish’, and 38 39 ‘feeling bad’. One participant reported that her children gave her limb massages to relieve her 40 41 fatigue symptoms. 42 43 on October 2, 2021 by guest. Protected copyright. 44 ‘I just can’t do anything. I just can’t. When a headache attacks, I must simply sleep without 45 46 doing anything. Frankly speaking, it occurs so severely that I must lay myself down.’ 47 (Participant I, M/28) 48 49 50 ‘I wake up repeatedly after one or two hours of sleep; however, I fall asleep shortly afterward, 51 52 and the total amount of time sleeping is similar to that of other people. Things are so repetitive 53 54 that I just keep dreaming in the middle of sleeping and hence feel sluggish when I get up in the 55 morning, and because of this, I am more tired in the daytime. I have the feeling of walking in a 56 57 fog and the feeling of wind blowing in my head… I always have heavy shoulders. It is as if a 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 11 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 child is riding on my shoulders.’ (Participant B, F/29) 4 5 6 7 Participants experienced sensitive reactions to surrounding stimuli and emotional changes. Such 8 psychological symptoms often intensified into demotivation, lower self-esteem, and severe 9 10 depression. 11

12 13 ‘Even in a very routine conversation, I feel my husband annoying me even though he is just 14 15 talking as usual.For I’ve been peer arguing with himreview almost every day becauseonly I speak to him badly due 16 to my illness.’ (Participant J, F/35) 17 18 19 20 ‘I was driven into a state in which I didn’t want to eat, didn’t have any desires, and felt 21 depressed… left alone with teardrops.’ (Participant M, F/64) 22 23 24 2) Changes in everyday life 25 26 The interviewees reported that they had difficulty being understood by others in everyday life, 27 28 even though they experienced severe symptoms. The participants were disappointed by the 29 responses of other people who stated that fatigue is merely a trivial symptom that everyone 30 31 experiences normally. In particular, office workers were concerned about low performance in the 32 33 workplace and did not want to be recognised as being incompetent by their co-workers and 34 superiors. They underwent a vicious cycle in which they drank many caffeinated drinks to 35 http://bmjopen.bmj.com/ 36 mitigate their symptoms of fatigue and increase their performance, which in turn caused sleep 37 disturbances. 38 39 40 41 ‘I keep really calm outwardly. I don’t even notice anything in the mirror except that I am a 42 little pale. My outward expression does not reflect my inner troubles, so I am very 43 on October 2, 2021 by guest. Protected copyright. 44 disappointed.’ (Participant H, F/50) 45 46 47 ‘I can’t help being ineffective in the afternoon because I am unable to focus. Therefore, I find 48 49 caffeine drinks such as coffee and green tea helpful initially, but later I become so used to them 50 that they keep me awake at night, hence the vicious cycle of fatigue.’ (Participant B, F/29) 51 52 53 54 Additionally, participants were passive in their family and social lives because they were always 55 tired. The interviewees considered daily activities, such as eating out with their families, outdoor 56 57 activities, and travel, to be considerable burdens and increasingly avoided their previously 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 12 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 enjoyed hobbies, such as exercise, which worried their families and depressed the family 4 5 atmosphere. In their social lives, they tried to abstain from interpersonal relations in order to rest. 6 7 As a result, the variety of their daily activities shrank and became monotonous. 8 9 10 ‘Now, I continuously reduce social activities. Though I had promised to talk about business to 11 someone, I just wanted him to quit and leave. I was not supposed to say “Let’s quit because I 12 13 am tired.” Then, after the counselling session, I collapsed.’ (Participant D, M/64) 14 15 For peer review only 16 3. Selection of TKM treatment 17 18 1) Reasons why patients sought traditional Korean medical treatment 19 20 Before receiving TKM treatment, some participants visited western medical hospitals to treat 21 their constant fatigue but did not experience any healing effect or obtain a particular diagnosis. To 22 23 avoid continuously difficult situations, they tried TKM treatments. 24

25 26 ‘The reason why I decided to use oriental medical treatment was because western medical 27 28 hospitals didn’t recognise my symptoms, therefore I would not be cured.’ (Participant G, M/51) 29 30 31 Some participants received TKM treatment upon the recommendation of family or colleagues, 32 33 who introduced them to famous TKM clinics or TKM treatments. 34 35 http://bmjopen.bmj.com/ 36 ‘My daughters encouraged me to take a traditional Korean medication because I was weak.’ 37 (Participant O, F/59) 38 39 40 41 ‘People said that I should visit some place to be treated for fatigue because I should be in good 42 condition. As for traditional Korean medication treatments, large centres are supposed to treat 43 on October 2, 2021 by guest. Protected copyright. 44 only one disease particularly well. I frequented many TKM clinics.’ (Participant D, M/64) 45 46 47 Most of the participants believed that western medical doctors treat clearly identified diseases, 48 49 while TKM doctors restore patients’ physical functions to produce a harmonious condition. They 50 preferred TKM treatments because western medical treatments may have severe side effects, 51 52 while TKM does not have a strong influence on the body and has few side effects. Most of the 53 54 participants believed that TKM comprises a radical treatment that restores their weak body by 55 improving their constitution or increasing their immunity. Additionally, the participants believed 56 57 that TKM would be effective in the long term if they endured the relatively long treatment time 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 13 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 while their symptoms got better or remained. 4 5 6 7 ‘Western medicine targets only short-term effects, but I certainly feel little burden with 8 traditional Korean medicine, even though a longer treatment is necessary compared to that of 9 10 western medicine.’ (Participant D, M/64) 11

12 13 2) Effects of traditional Korean medical treatment 14 15 Most of the For participants peer took herbal medications review to restore theironly fitness or to relieve their 16 symptoms of fatigue. Most of the participants felt improved; their fatigue-related symptoms were 17 18 relieved, and they felt more comfortable psychologically. Some participants relied more on TKM 19 20 treatments because they enjoyed smelling herbal medications and felt that their condition 21 improved when receiving acupuncture. Some of the participants reported that they experienced 22 23 more of an effect on their symptoms when they consulted traditional Korean medical doctors and 24 received physical and relaxation therapies. 25 26 27 28 ‘After receiving acupuncture twice a week along with traditional Korean medications, I am 29 now almost completely restored so that I can engage in exercise activities.’ (Participant J, F/35) 30 31 32 33 ‘Before regularly visiting a traditional Korean medical centre, I suffered from headaches 34 almost every two days. Thus, headache medications were my best friends; however, I have not 35 http://bmjopen.bmj.com/ 36 had to take them since visiting the traditional Korean medical centre.’ (Participant I, M/28) 37

38 39 The participants reported that they were able to bear the unpleasant taste of traditional Korean 40 41 medications and the inconvenience of their administration for the sake of their treatment. 42 Additionally, they carried out a detailed self-evaluation process regarding taking traditional 43 on October 2, 2021 by guest. Protected copyright. 44 Korean medications. They believed that traditional Korean medications are effective only when 45 46 taken early and that the effects of these medications might occur later rather than earlier because 47 they are restorative medications rather than cures. Additionally, the participants believed that 48 49 traditional Korean medications should be taken periodically in the long term because they exert 50 effects when taken but that they are ineffective or have reduced effects when not taken. 51 52 53 54 ‘It seems that traditional Korean herbal medications have good effects in the early phase of a 55 disease. It seems that their effects are better when I happen to take them in the early stages. 56 57 Then, symptoms don’t worsen. What I feel when taking traditional Korean medications 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 14 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 periodically is that I don’t have any difficult feelings after taking them for approximately two or 4 5 three weeks; they don’t cure me in two to three days, as when I take western medications.’ 6 7 (Participant E, F/26) 8 9 10 However, not every participant experienced these effects of traditional Korean medicine 11 treatments. Some participants were not convinced of their claimed effects or reported 12 13 experiencing no effects. 14 15 For peer review only 16 ‘Because I was still too tired, I never thought they had any effects.’ (Participant G, M/51) 17 18 19 20 4. Recognition of TKM 21 22 23 1) The traditional Korean medical perspective of fatigue 24 Most of the participants were satisfied with the traditional Korean medical approach, in which 25 26 doctors treat fatigue as a disease, provide positive counselling, and write a prescription for the 27 28 symptoms. TKM doctors account for the causes of fatigue from the perspective of TKM and write 29 individually tailored prescriptions. 30 31 32 33 ‘Professor Son said that fatigue is also an illness. Fatigue is also an illness. He classified it as a 34 type of disease.’ (Participant F, M/54) 35 http://bmjopen.bmj.com/ 36 37 The participants tended to have more confidence in TKM if they were unsatisfied with the 38 39 conventional medical doctors’ diagnoses. Medical doctors are not interested in fatigue patients 40 41 because western medicine does not acknowledge chronic fatigue as a disease; it offers treatment 42 only when there is a precise diagnosis made based on an examination. It was recommended by 43 on October 2, 2021 by guest. Protected copyright. 44 western medical doctors that the participants receive a short-term treatment to relieve symptoms 45 46 or improve their life habits. In particular, they expressed disappointment because they felt that 47 their symptoms were not properly understood by western medical doctors. 48 49 50 ‘Western medicine uses only certain results from examinations such as blood tests and X-ray 51 52 scans to treat patients. I could not receive any treatment when my symptoms were outside of 53 54 those results, and there are few treatments in western medicine when I am sick and suffer from 55 pain.’ (Participant J, F/34) 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 15 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 ‘Western medical doctors said there was nothing special, though I felt I was dying. I felt pain 4 5 here and there and when I went to visit them because of my illness, I felt crazy when they said I 6 7 was “OK”.’ (Participant N, F/54) 8 9 10 2) Relationship with traditional Korean medical doctors 11 The participants felt comfortable with traditional Korean doctors who understood their pain and 12 13 listened to their concerns. The participants reported that during consultations, TKM doctors 14 15 performed specificFor physical peer examinations reviewincluding checking their only pulse before explaining to the 16 patient the condition of their body and their disease state. The participants felt that they could 17 18 freely ask questions of the TKM doctors. Some participants reported that they did not spare 19 20 medical expenses because they felt TKM doctors dealt not only with their illness but also their 21 psychological state. 22 23 24 ‘I am much more familiar with traditional Korean medical doctors. I can get close to them, 25 26 feeling no distance between us, so I can say anything and feel they will listen to anything I say. 27 28 Usually, when you have something to ask, you cannot say anything for fear of what the western 29 medical doctor will say.’ (Participant M, F/64) 30 31 32 33 ‘When visiting a traditional Korean medical clinic, I have a doctor examining my pulse, and I 34 listen to everything the doctor is saying. I consult him to be informed of what I’ve been 35 http://bmjopen.bmj.com/ 36 ignorant of. When the professor says it will be better in this way, I am convinced and come to 37 know what I have been ignorant of. Additionally, it prevents illness.’ (Participant L, F/59) 38 39 40 41 3) Limitations of traditional Korean medical treatment 42 Because the main treatment for chronic fatigue involves taking traditional Korean medicine, the 43 on October 2, 2021 by guest. Protected copyright. 44 participants felt more economic burden with TKM than with western medicine. Furthermore, 45 46 their economic burden increases because the National Health Insurance does not cover TKM; the 47 non-establishment of the charge system in TKM has been a cause for shock with regard to 48 49 treatment expenses. 50

51 52 ‘You know health insurance does not cover TKM. The cost is 70,000~80,000 KRW (62~70 US 53 54 dollars) per visit. It takes 150,000 KRW (132 US dollars) to visit a clinic twice a week. In 55 addition, as for medications, you should expect to pay 500,000~600,000 KRW (440~528 US 56 57 dollars) for two weeks’ doses. Therefore, you will spend 1,200,000~1,300,000 KRW (1055~1143 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 16 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 US dollars). Consequently, the poor cannot afford it. As a matter of fact, the government 4 5 should provide welfare for this and not for useless things.’ (Participant D, M/64) 6 7 8 Participants reported that TKM is problematic and that they encounter difficulties in taking care 9 10 of their oral medications over the long period of treatment. They also noted that there are 11 limitations in fully relying on TKM, as its principles and mechanisms of treatment are not 12 13 standardised and its treatment effects are vague. Additionally, they suggested that it is necessary 14 15 to explore methodsFor of treatment peer in areas reviewwhere western medicine only cannot provide cures and to 16 improve medical services that are easily accessed by all socioeconomic groups, as in the case of 17 18 western medicine. 19 20 21 ‘They can standardise TKM by clearing up vague and equivocal parts given that once upon a 22 23 time, Sir Heo Jun had established a system during the Joseon Dynasty. It is ridiculous for 24 modern people to say that they cannot provide standardised treatments. They pull tricks to do 25 26 things on their own. They never consider things from the perspective of consumers.’ 27 28 (Participant G, M/51) 29 30 31 5. Daily life care along with fatigue 32 33 34 The participants believed that they needed to manage their health care on their own to lead a 35 http://bmjopen.bmj.com/ 36 harmonious life with fatigue, as fatigue is a disease that they cannot help living with. The 37 participants recognised the limitations of TKM and were therefore proactively trying to take care 38 39 of their health so that they could prevent the vicious cycle of fatigue by maintaining their 40 41 improved condition after treatment. 42 43 on October 2, 2021 by guest. Protected copyright. 44 ‘I admit fatigue will live long; that is to say, it is a partner, a familiar partner. Should I say it’s 45 46 like sleeping with the enemy? As you know, it is a thing that you cannot help being with though 47 you hate it and want to get rid of it. It feels like 20~30 years of marriage or a mom and dad-like 48 49 feeling. Though I hate it, I can’t help it as I have been cursed with fatigue. I feel like I should 50 negotiate with it during my life.’ (Participant E, F/26) 51 52 53 54 ‘I get better if I am treated. I’ve felt that I should make efforts to change my life habits by not 55 being dependent solely on the treatment. I should be engaged in self-management in order to 56 57 avoid such a degree of chronic fatigue.’ (Participant J, F/35) 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 17 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 The participants made efforts to have a positive attitude towards life, to practice good health care 6 7 on their own and to be engaged in more positive self-management in terms of stress management, 8 exercise, swimming, meditation, etc. Most of them found pleasure in their mind and tried to be 9 10 grateful for life. Additionally, they made meditation a part of their life and controlled their 11 amount of exercise in consideration of their condition. 12 13 14 15 ‘Now, I will liveFor in pleasure. peer It seems that review it is good for my health only if I am pleased.’ (Participant 16 H, F/50) 17 18 19 20 ‘As I get severely tired, I consider it when I exercise. So, I will exercise three times when I used 21 to do it 5 times before. I quit when I feel tired. That way, I expect that I will get better.’ 22 23 (Participate G, M/51) 24 25 26 27 28 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 18 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Discussion 4 5 We found that patients with chronic fatigue believed that the development of their illness was due 6 7 to physical degradation caused by underlying diseases, the aging process or introverted personal 8 characteristics. They experienced physical and psychological symptoms associated with fatigue 9 10 that resulted in severe difficulties in relation to their daily routine activities. The motivation for 11 choosing TKM was dissatisfaction with conventional medicine and previous positive experiences 12 13 with TKM treatment of the patients themselves or their caregivers. During TKM treatment, 14 15 patients foundFor that TKM practitionerspeer considered review fatigue to be a treatableonly illness, and patients felt 16 comfortable with the doctor-patient relationship in TKM practice. The economic burden and 17 18 scarcity of scientific evidence were regarded as limitations to the utilisation of TKM. Finally, 19 20 patients recognised their fatigue and took it to be a ‘familiar partner’ that lives with them for their 21 entire lifetime. 22 23 24 The strengths of this study are its exploration of the patients’ perception and experience of 25 26 chronic fatigue and the utilisation of TKM. Previous studies have reported that patients with 27 28 chronic fatigue tend to utilise complementary and alternative medicine (CAM) in Western 29 society8. According to a recent survey study, in Korea, many patients with chronic fatigue also 30 31 use non-conventional medical treatments4. However, this study discussed the perception of 32 33 fatigue in patients and their motivations regarding their selection of TKM to relieve their 34 symptoms. In our qualitative research, we first explored the perceptions and personal experiences 35 http://bmjopen.bmj.com/ 36 of TKM patients and tried to ascertain what they considered and expected when coping with 37 chronic fatigue. Second, the motivation for choosing alternative care in chronic fatigue patients 38 39 was observed in the Korean context. Although it is controversial, the main reasons for choosing 40 41 CAM practitioners are reported to be a dissatisfaction with conventional treatments and a 42 preference for the ideology of alternative therapies, which in Western societies represent a holistic 43 on October 2, 2021 by guest. Protected copyright. 44 attitude towards health care17 18. The motivation of Korean patients with chronic fatigue was 45 46 associated with noncompliance or discontent with conventional treatment, as is the case in 47 Western societies. Interestingly, patients had the belief that TKM has the benefit of improving 48 49 constitutional weakness, which was accepted as an imaginary pathology from which chronic 50 fatigue originates and is the reason why conventional medicine was not effective in improving 51 52 their symptoms. In addition, previous positive experiences with the use of TKM by patients or 53 54 their caregivers strengthened this belief. These concepts might be based on Korean-specific 55 health care ideals. In Korea, TKM is not merely an alternative medicine, it is a medical system 56 57 that has been practiced throughout Korean history and currently constitutes a major part of the 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 19 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 health care system, along with conventional medicine. Two independent educational and practice 4 5 systems exist based on exclusive license classifications in Korea19. Due to this clinical situation, 6 7 patients with chronic fatigue seem to visit TKM clinics not as a counterplan to conventional 8 medicine but as the optimal choice among the possible treatments. From this study, we also found 9 10 that the patient’s belief was strong enough to endure the long-term and sometimes painful 11 interventions such as burning injuries during TKM. This concept was similarly observed in our 12 13 previous qualitative research concerning patients’ experience of moxibustion for chronic knee 14 15 osteoarthritis;For even though peer moxibustion mayreview introduce severe only adverse events, including burn 16 wounds, patients continued the moxibustion with moderate to high intensity20. How beliefs 17 18 regarding TKM are formulated and reinforced in the Korean population needs to be examined in 19 20 future studies, alongside studies on the motivation for choosing TKM treatment and the 21 perceptions of TKM. 22 23 24 This study has limitations. Although interviews were conducted until the data reached saturation, 25 26 the generalisability of this study cannot be assured for several reasons. Patients who did not want 27 28 TKM treatment or dropped out during the treatment course may represent those with an opposing 29 perception to that of the pro-TKM patients. We included patients with chronic fatigue referred by 30 31 TKM doctors in this study, which might introduce a selection bias. TKM is mainly practiced in 32 33 Korea, so the study results need to be carefully interpreted in reference to patients with different 34 characteristics such as racial background, educational or social status. Another limitation is the 35 http://bmjopen.bmj.com/ 36 obscurity of the definition of the study population. Chronic fatigue can originate from diverse 37 mental or physical conditions21. The severity and importance of symptoms and their impact on the 38 39 daily lives of patients are not the same for all patients. In this study, we intended to explore the 40 41 perception and motivation of patients using TKM as a basic step towards understanding TKM 42 users. Because of the difficulty in recruiting patients who had both fatigue lasting more than 6 43 on October 2, 2021 by guest. Protected copyright. 44 months and experience with TKM therapies, we used a strategy that adopted a broader disease 45 46 definition of chronic fatigue. Our study included more female patients than males, which might 47 affect the study result. Future research conducting interviews on TKM users with more focused 48 49 and balanced patient groups, including fatigue in cancer or endocrine disease, may highlight the 50 value of TKM in different contexts. 51 52 53 54 Previous reports on the usage of complementary and alternative medicine (CAM) suggested that 55 patients with chronic fatigue tend to seek CAM interventions more often than the non-fatigue 56 57 group22. In our study, we found that patients with chronic fatigue tend to use TKM as an 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 20 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 alternative plan for coping with their symptoms. In addition, it is generally accepted that the 4 5 purpose of seeking CAM treatment is related to dissatisfaction with conventional medicine23. Our 6 7 study findings also support this assumption of patients’ attitudes towards CAM therapy. 8 9 10 We found that patients recognised chronic fatigue as an important symptom causing severe 11 disability in their daily lives, and they sought appropriate treatments. However, they thought that 12 13 physicians tended to recognise fatigue as a minor problem that did not warrant aggressive 14 24 15 assessment andFor interventions peer commensurate review with patients’ requests only. In allopathic medicine, only 16 a partial solution is offered as a treatment for chronic fatigue, as pathophysiological mechanisms 17 18 have not yet been established in many cases21. Considering the gap between patients’ expectations 19 20 and clinical practice, it is no surprise that patients in Korea frequently use alternative methods of 21 coping with their symptoms12. Health care policy administrators need to keep in mind that chronic 22 23 fatigue may be a serious health problem and solutions should be proposed based on the patient’s 24 perception of their condition. In addition, TCM interventions including herbal drugs, acupuncture, 25 26 moxibustion and qigong therapy are likely to be effective in chronic fatigue, although evidence is 27 25 28 currently limited due to methodological flaws of the clinical trials . Similar clinical effectiveness 29 can be expected in TKM, which is a type of traditional East Asian medicine. If evidence 30 31 regarding the effectiveness of TKM interventions for chronic fatigue were to be provided by 32 33 rigorous studies, TKM might be accepted as an appropriate therapy to alleviate symptoms related 34 to chronic fatigue. 35 http://bmjopen.bmj.com/ 36 37 Author contribution statement 38 39 HMS, EYP, DHK, EJK, MSS and THK conceived and participated in the design of this research. 40 41 HMS, EYP, DHK and EJK conducted the interviews and analysed the data. HMS, EYP, DHK, 42 EJK, MSS and THK wrote the draft of this manuscript. 43 on October 2, 2021 by guest. Protected copyright. 44 45 46 Competing interest 47 None. 48 49 50 Funding 51 52 This study was supported by Korea Institute of Oriental medicine (K12010). 53 54 55 Data sharing 56 57 No additional data available 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 21 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Acknowledgement 6 7 The English grammar of this manuscript was edited by AMERICAN JOURNAL EXPERTS 8 company. 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 22 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 References 6 7 1. Klimas NG, Broderick G, Fletcher MA. Biomarkers for chronic fatigue. Brain, behavior, and im 8 munity 2012;26(8):1202-10. 9 2. Jason LA, Evans M, Brown M, et al. What is fatigue? Pathological and nonpathological fatigue. 10 PM & R : the journal of injury, function, and rehabilitation 2010;2(5):327-31. 11 3. Afari N, Buchwald D. Chronic fatigue syndrome: a review. The American journal of psychiatry 12 2003;160(2):221-36. 13 4. Kim CH, Shin HC, Won CW. Prevalence of chronic fatigue and chronic fatigue syndrome in K 14 orea: community-based primary care study. Journal of Korean medical science 2005;20(4):5 15 29-34.For peer review only 16 5. Shin D. [Trends in research on the history of medicine in Korea before the modern era]. Ui sa 17 hak 2010;19(1):1-43. 18 6. Yi C-m. Longevity & life preservation in oriental medicine: Kyung Hee University Press, 1996. 19 7. UNESCO. Donguibogam: Principles and Practice of Eastern Medicine: http://portal.unesco.org/ci/e 20 n/files/27075/12133693253Korea_Donguibogam.pdf/Korea%2BDonguibogam.pdf. , 2010. 21 8. Alraek T, Lee MS, Choi TY, et al. Complementary and alternative medicine for patients with c 22 hronic fatigue syndrome: a systematic review. BMC complementary and alternative medicin 23 e 2011;11:87. 24 9. Yin C, Park H-J, Chae Y, et al. Korean acupuncture: the individualized and practical acupunctur 25 e. Neurological research 2007;29(Supplement-1):10-15. 26 10. Adams D, Wu T, Yang X, et al. Traditional Chinese medicinal herbs for the treatment of idio 27 pathic chronic fatigue and chronic fatigue syndrome. The Cochrane database of systematic 28 reviews 2009(4):CD006348. 29 11. Wang T, Zhang Q, Xue X, et al. A systematic review of acupuncture and moxibustion treatme 30 nt for chronic fatigue syndrome in China. The American journal of Chinese medicine 200 31 8;36(1):1-24. 32 12. Choi DH KC, Shin HC, Park YW, Sung EJ, Lee KH. Patterns of complementary and alternati 33 ve medicine therapies in patients with chronic fatigue or pain. Korean J Fam Med 2009;1 34 4:182-89. 35 13. Park H-L, Lee H-S, Shin B-C, et al. Traditional medicine in China, Korea, and Japan: a brief http://bmjopen.bmj.com/ 36 introduction and comparison. Evidence-Based Complementary and Alternative Medicine 20 37 12;2012. 38 14. Yiu Y, Qiu M. [A preliminary epidemiological study and discussion on traditional Chinese med 39 icine pathogenesis of chronic fatigue syndrome in Hong Kong]. Zhong xi yi jie he xue ba 40 o= Journal of Chinese integrative medicine 2005;3(5):359-62. 41 15. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qualitative health rese arch 2005;15(9):1277-88. 42 16. Sandelowski M. The problem of rigor in qualitative research. ANS Advances in nursing scienc 43 on October 2, 2021 by guest. Protected copyright. e 1986;8(3):27-37. 44 17. Astin JA. Why patients use alternative medicine: results of a national study. JAMA : the journ 45 al of the American Medical Association 1998;279(19):1548-53. 46 18. Kelner M, Wellman B. Health care and consumer choice: medical and alternative therapies. So 47 c Sci Med 1997;45(2):203-12. 48 19. Ryu J, Choi B, Lim B, et al. Medical practices and attitudes of dual-licensed medical doctors 49 in Korea. Evidence-based complementary and alternative medicine : eCAM 2013;2013:1836 50 43. 51 20. Son HM, Kim DH, Kim E, et al. A qualitative study of the experiences of patients with knee 52 osteoarthritis undergoing moxibustion. Acupuncture in medicine : journal of the British M 53 edical Acupuncture Society 2013;31(1):39-44. 54 21. Finsterer J, Mahjoub SZ. Fatigue in Healthy and Diseased Individuals. The American journal o 55 f hospice & palliative care 2013. 56 22. Jones JF, Maloney EM, Boneva RS, et al. Complementary and alternative medical therapy utili 57 zation by people with chronic fatiguing illnesses in the United States. BMC complementar 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 23 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 y and alternative medicine 2007;7(1):12. 4 23. McFadden KL, Hernández TD, Ito TA. Attitudes toward complementary and alternative medicin 5 e influence its use. Explore: The Journal of Science and Healing 2010;6(6):380-88. 6 24. Cho HJ, Menezes PR, Hotopf M, et al. Comparative epidemiology of chronic fatigue syndrome 7 in Brazilian and British primary care: prevalence and recognition. The British journal of 8 psychiatry : the journal of mental science 2009;194(2):117-22. 9 25. Chen R, Moriya J, Yamakawa J-i, et al. Traditional Chinese medicine for chronic fatigue syndr 10 ome. Evidence-Based Complementary and Alternative Medicine 2010;7(1):3-10. 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 24 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Table 1. Characteristics of interviewees 4 5 Participant’s Sex Underlying Duration Chief Experience of 6 code diseases of illness complaints TKM* 7 (year) treatments 8 A F Thyroid gland 3 Migraine, Herbal 9 10 cancer dyspepsia, medicine and 11 postoperative short-term acupuncture 12 status/ memory loss 13 cholecystectomy 14 B F None 5 Headache, Herbal 15 For peer reviewdyspepsia, only medicine and 16 neck and acupuncture 17 shoulder pain, 18 insomnia 19 C F Hypertension 10 Leg Herbal 20 weakness, medicine, 21 walking acupuncture 22 23 difficulty, and 24 headache moxibustion 25 D M Angina pectoris 40 Headache, Herbal 26 wasting medicine 27 E F Anaemia 9 Blurred Herbal 28 vision, medicine 29 periorbital 30 tenderness, 31 neck stiffness, 32 nausea, 33 headache 34

F M Chronic 5 Heaviness in Herbal http://bmjopen.bmj.com/ 35 36 bronchitis the morning, medicine and 37 wasting moxibustion 38 G M None 3 Nasal Herbal 39 sensitivity to medicine and 40 smoke acupuncture 41 pollution; 42 headache;

43 difficulty on October 2, 2021 by guest. Protected copyright. 44 speaking 45 H F Uterine Myoma 10 Headache, Herbal 46 wasting medicine, 47 moxibustion 48 49 and cupping 50 therapy 51 I M Pyelonephritis 10 Headache, Herbal 52 palpitation, medicine, 53 tremor of acupuncture, 54 hands and feet moxibustion 55 and cupping 56 therapy 57 J F Diabetes/ 5 Difficulty Herbal 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 25 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Spondylosis waking up in medicine, 4 the morning, moxibustion 5 6 lethargy, and cupping 7 sweating therapy 8 during sleep, 9 anorexia 10 K M Allergic rhinitis 11 Lethargy Herbal 11 medicine 12 L F Gastritis 15 Loss of Herbal 13 energy medicine, 14 acupuncture, 15 For peer review onlymoxibustion 16 and cupping 17 therapy 18 19 M F Gastric cancer 3 Blurred Herbal 20 postoperative vision, loss of medicine, 21 status energy acupuncture 22 and 23 moxibustion 24 N F Chronic gastritis 1 Hearing Herbal 25 disturbance, medicine, 26 eyestrain, acupuncture 27 stomatitis, and cupping 28 difficulty therapy 29 waking up 30 O F None 0.6 Feeling heavy Herbal 31 in the head, medicine and 32 33 dizziness, loss moxibustion 34 of energy, 35 feeling of http://bmjopen.bmj.com/ 36 shoulder 37 heaviness 38 *TKM: traditional Korean medicine 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 26 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Table 2. Interview Schedule 6 7 8 Interview Additional interview 9 Participant’s 10 code Sex 11 Duration Duration Frequency Methods Frequency 12 (min) (min) 13 14 15 A For peerF 1 review95 only 16 17 B F 1 60 Telephone 1 15 18 19 C F 1 70 20 D M 120 21 22 E F 90 23 24 F M 1 60 25 26 G M 1 60 27 28 H F 1 90 29 I M 1 60 30 31 J F 1 100 Telephone 1 15 32 33 K M 1 60 34 35 L F 1 80 http://bmjopen.bmj.com/ 36 37 M F 1 90 38 39 N F 1 100 40 O F 1 50 Telephone 1 20 41 42 43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 27 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 Table 3. Generation and elaboration of categories, subcategories, and concept 6 7 Category Subcategory Concept 8 9 Causes of fatigue Physical factors Innate weakness 10 11 Aging 12 Underlying disease 13 14 Overwork 15 For peer review only 16 Negligence of health care 17 Personal character Sensitivity 18 19 Full of worry 20 Introverted character 21 22 Passive character 23 24 Compulsive and principled character 25 Symptoms of Physical symptoms Headaches 26 27 fatigue Heavy neck and shoulder 28 29 Sleep disturbances 30 Lack of attention 31 32 Memory deficits 33 Difficulty getting up in the morning 34 35 Change of eating habit http://bmjopen.bmj.com/ 36 37 Psychological symptoms Sensitive reactions 38 Lack of motivation 39 40 Lethargy 41 42 Lower self-esteem

43 Anxiety on October 2, 2021 by guest. Protected copyright. 44 45 Depression 46 Changes in everyday life 47 Lack of understanding of fatigue 48 symptoms by others 49 50 Low performance in their workplaces 51 Passive in family and social life 52 53 Abstain from interpersonal relations 54 55 Selection of Reasons Persistent fatigue symptom in spite of 56 traditional Korean getting different treatment 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 28 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 medical treatment Not obtain a particular diagnosis from 6 7 western medicine 8 Recommendation for using TKM from 9 10 family and colleagues 11 12 Positive effects Relieve of fatigue symptom related 13 symptoms 14 15 For peer reviewRestore their only fitness 16 Fewer side effects 17 18 Feel more comfortable psychologically 19 20 Negative effect Inconvenience of using TKM: medication 21 Inconsistent therapeutic effect of TKM 22 23 Recognition of TKM perspective about Treating fatigue as a disease 24 25 traditional Korean fatigue Positive approach to the patient 26 medicine Individually tailored prescriptions 27 28 Relationship with Feel more comfortable with TKM doctors 29 traditional Korean medical 30 TKM doctor as a good listener 31 doctors 32 Limitations of using TKM 33 Economic burden 34 Lack of establishment for the cost charge 35 http://bmjopen.bmj.com/ 36 system: medical insurance 37 Requiring long term period for treatment: 38 39 taking medication 40 41 Non-standardised treatment 42 Vague treatment effects

43 on October 2, 2021 by guest. Protected copyright. 44 Difficulty of treatment compliance 45 46 Daily Life Care To lead a harmonious life Recognise the limitations of TKM 47 along with Fatigue with fatigue Recognise the need for health care on their 48 49 own 50 More positive self-management: exercise, 51 52 swimming, meditation, listening music, 53 54 stress reduction 55 Positive attitude towards life 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 29 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 Figure 1. Relationships between categories of usage of traditional Korean medicine (TKM) in 4 patients with chronic fatigue (Coding tree) 5 6 7 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 30 of 31 BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 Figure 1 33 119x90mm (300 x 300 DPI) 34 35 http://bmjopen.bmj.com/ 36 37 38 39 40 41 42

43 on October 2, 2021 by guest. Protected copyright. 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 31 of 31 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2014-006178 on 8 September 2015. Downloaded from 1 2 3 4 Standards for Reporting Qualitative Research (SRQR) checklist 5 6 7 No Topic Item 8 S1 Title P1 9 10 S2 Abstract P2 11 S3 Problem formulation P5 12 S4 Purpose or research question P5 13 14 S5 Qualitative approach and P6 15 For peerresearch paradigmreview only 16 17 S6 Researcher characteristics and P7 18 reflexivity 19 20 S7 Context P6 21 S8 Sampling strategy P6 22 S9 Ethical issues pertaining to P6-7 23 24 human subjects 25 S10 Data collection methods P6 26 27 S11 Data collection instruments P6 28 and technologies 29 S12 Units of study P8, P23 30 31 S13 Data processing P6 32 S14 Data analysis P6 33 34 S15 Techniques to enhance P7 35 trustworthiness http://bmjopen.bmj.com/ 36 37 S16 Synthesis and interpretation P8-P17 38 S17 Links to empirical data P8-P17 39 S18 Integration with prior work, P18 40 41 implications, transferability, 42 and contribution(s) to the field

43 on October 2, 2021 by guest. Protected copyright. 44 S19 Limitations P19 45 S20 Conflicts of interest P20 46 47 S21 Funding P20 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml