“The Monkey on Your Shoulder”: A Qualitative Study of Lymphoedema Patients' Attitudes to and Experiences of Acupuncture and Moxibustion

Background. Lymphoedema, a distressing consequence of cancer treatment, has significant negative impact on health-related quality of life. Multidisciplinary approaches are needed to improve physical and psychosocial wellbeing. Acupuncture and moxibustion (acu/moxa), two modalities of traditional East Asian medicine, may contribute to improved outcomes for cancer survivors with lymphoedema. Aim. To explore how patients with lymphoedema secondary to cancer treatment perceive and experience acu/moxa treatment. Design and Setting. A qualitative focus group study, nested in a 3-step mixed methods observational study, was carried out in a cancer drop-in and information centre in north-west London. Methods. Six focus groups and one telephone interview were conducted with 23 survivors of breast or head and neck cancer, who had completed up to 13 acu/moxa treatments. Scripts were transcribed, coded, and analysed to identify salient and overarching themes. Results. Participants described feeling disempowered by cancer treatment and subsequent diagnosis of lymphoedema. Acu/moxa was valued for its whole-person approach and for time spent with a practitioner who cared, listened, and responded. Participants reported changes in physical and psychosocial health, including increased energy levels and reduced pain and discomfort, and feelings of empowerment, personal control, and acceptance. Many were motivated to improve self-care. Conclusion. Many participants who received acu/moxa treatment reported improved wellbeing and a more proactive attitude towards self-care.


Introduction
Cancer treatments are the main cause of secondary lymphoedema in the developed world, as surgery and radiotherapy may cause damage to lymph vessels and/or nodes [1]. The resulting imbalance between interstitial fluid production and transport causes accumulation of fluid in the tissue spaces, leading to chronic swelling, inflammation, and development of fibrotic and adipose tissue [2,3]. Treatment, which aims to limit progression, comprises individualised programmes combining intensive treatment (decongestive lymphatic therapy) with daily self-care regimens that include skin care, wearing of compression garments, self-massage, and exercise and movement [1,4]. Currently incurable, lymphoedema requires lifelong daily management to prevent progression.
A distressing and feared consequence of cancer treatments, lymphoedema is associated with melanomas, gynaecological, prostate, breast, and head and neck cancers [5]. Amongst breast cancer survivors the reported incidence is 20-30% [6,7], and amongst head and neck cancer survivors it is 48-68% [8]. The condition is disfiguring, disabling, and distressing with significant impacts on health-related quality of life [9][10][11]. The physical and psychosocial impacts on breast cancer survivors are well documented internationally [12] and less well investigated for head and neck cancer survivors [13,14]. In addition to swelling and increased risk of infection 2 Evidence-Based Complementary and Alternative Medicine would like to give feedback. A telephone interview was arranged to accommodate this. 2 1 participant was unable to come to this group and was rescheduled to focus group 6. 3 1 participant felt ill and was unable to attend at short notice.
(cellulitis), physical consequences include a sensation of heaviness, pain, discomfort, restricted mobility, and loss of function, while psychosocial consequences include psychological distress, social embarrassment, poor body image, social isolation, and financial burden. Treatment should include multidisciplinary approaches to address quality of life, as well as the complex physiological and psychosocial problems associated with a chronic condition in patients with multiple comorbidities [15].
Complementary and alternative medicine (CAM) can be included as part of a multidisciplinary approach to health care. Cancer survivors are users of CAM with European studies reporting CAM usage by 44.7% and 22.7% of breast and head and neck cancer survivors [16,17]. People with cancer treatment-related lymphoedema also choose CAM in addition to mainstream treatment [18], with reported usage by 45% of women with lymphoedema related to breast or gynaecological cancers [19].
Acupuncture is valued for symptom improvement and improved physiological and psychological coping by people with chronic disease, including cancer [20][21][22]. Its use amongst people with lymphoedema has been controversial, due to concerns about skin puncture exacerbating swelling or introducing infection [1,23]. However, a number of early stage studies report safe and promising outcomes for acupuncture [24][25][26][27] and for the combined modalities of acupuncture and moxibustion (the application of heat to stimulate acupuncture points) [28].
Building on our previous acupuncture research, which reported improvements in wellbeing and quality of life and reduced symptom burden in women undergoing adjuvant treatment for early breast cancer [29,30], we wished to investigate whether acupuncture and moxibustion (acu/moxa) could be used in the management of lymphoedema. Following Medical Research Council (MRC) guidelines for researching complex interventions [31], our overall study was a three-step patient-centred exploratory study employing mixed methods to investigate the feasibility of using acu/moxa to promote wellbeing and improve quality of life for breast cancer and head and neck cancer survivors with treatment-related secondary lymphoedema.
Step 1 comprised focus groups to assess the acceptability of acu/moxa treatment to people undergoing conventional treatment for lymphoedema; Step 2 was a clinical treatment phase in which 35 people received up to 13 acu/moxa treatments, the results of which are reported separately [23,32].
In this paper, we present qualitative research conducted in Step 3, in which participants who received acu/moxa participated in focus groups to discuss their experience of treatment. The aims of this step were to gather data that provided an insight into participants' perceptions of the following: (i) Experience of having acu/moxa treatments. (ii) Meaning of "wellbeing" and the effect of acu/moxa on wellbeing. (iii) Effect of acu/moxa treatment on their attitude to having lymphoedema.

Materials and Methods
Qualitative methods were used in order to obtain sufficient access to the meanings and perceptions of the participants in the acu/moxa study [33,34]. The focus group method was chosen to generate lively discussion and thus to enable participants to explore and clarify their views more thoroughly than might be achieved in a one-to-one situation [35].

Sample.
Thirty-three study participants who completed at least seven acu/moxa treatments in the clinical phase of the study were invited by letter to participate in focus groups. Twenty-six responded favourably, although not all were available to attend on the eventual dates set for the groups. The Hertfordshire Regional Ethics Committee approved the study (08/H0311/123).

Data Collection.
Six focus groups, lasting from 42 to 72 minutes, were held in meeting rooms at the cancer treatment centre between July and September 2009. Table 1 details the participants in each group according to gender and cancer type, shows the nonattendees and reasons for nonattendance, and lists the durations of the focus groups. Participants signed consent forms before the groups started and confidentiality and anonymity were assured. The focus groups were moderated, transcribed verbatim, and analysed by a researcher with expertise in qualitative research methods (Anthea Asprey). A comoderator (Teresa Young) audiotaped the sessions and observed the proceedings.
A questioning route was developed by the research team, using the recommended categories: opening, introductory, transition, key, and ending questions ( Table 2) [36]. The moderator adopted a sequential method [37] to elicit detailed information about the participants' experiences of taking part in the study from start to finish. The "key questions" regarding the concept of "wellbeing" and the effect of the acu/moxa treatments on this aspect of their life were introduced to the participants at approximately the midpoint of the discussion. A flexible approach to the questioning was adopted, allowing the participants to explore aspects that were important to them and to introduce any new factors. Open questions and prompts were used to explore the participants' perspectives in depth; discussion was encouraged and supported, with each participant given the opportunity to respond.
The moderator also conducted the interview, which lasted 20 minutes, using the same introduction and questions as for the focus groups.
Data collection continued until it was felt that saturation had been reached; that is, no new codes were emerging from the data.

Data Analysis.
The scripts were analysed thematically [38] using the computer-aided qualitative analysis package NVivo5 (version 2.0). The research analysis was an iterative and reflexive process to ensure that it was comprehensive and systematic and to maximise insight into the meanings conveyed by the participants [39,40]: as coding progressed and salient issues emerged, these were incorporated and applied to both new and previous transcripts. To ensure adherence to the need for visibility and accountability in

Participants.
Twenty-three people with upper body lymphoedema secondary to cancer treatment participated in this qualitative study (one participant, who was reluctant to join a group, was interviewed separately). The participants were aged 43-83 years with varied demographic backgrounds (Table 3). Most were female, as the majority of study participants were breast cancer survivors; however, HNC survivors were equally represented by both genders. Of particular note was the wide range of durations of lymphoedema, ranging from recent onset (6 months) to long-term chronic (11 years). The participants' quotations below are identified using a code number for anonymity, followed by BC for breast cancer and HNC for head and neck cancer.  Cancer treatment, for some, was a disempowering experience. Two participants compared their treatment in the NHS to being put on a "conveyor belt" or "train" and emphasised their own passive role in the process: Other individuals reported experiencing fatigue, pain, and anxieties about dealing with every day challenges such as social events and the demands of work, which could leave them exhausted. Participants also reported other conditions, sometimes not directly connected with lymphoedema; these included joint pain, sleep problems, and repeated respiratory infections. Some experienced discomfort from the side effects of medications, such as adjuvant cancer treatment (including extreme hot flushes or chronic itching) or painkillers (constipation).
The disfigurement associated with lymphoedema had personal and social consequences. One head and neck cancer survivor, who experienced intermittent bouts of lymphoedema swelling, said:

It isn't too pleasant if you see me when it's really bad, it's dreadful actually, it is just like Spitting
Image . . . I have to admit there are times when I can't bear to look in the mirror. (020 HNT) The reaction of others to their lymphoedema also caused difficulties for some participants, including social embarrassment. Enquiries, particularly from strangers, were irritating reminders, leading participants to "wish nobody mentioned it" (015 BC). Sometimes, the visibility of lymphoedema was experienced as being worse than having cancer itself: The cancer drop-in centre where acu/moxa treatments were given was on the hospital site where most participants had undergone treatment for cancer. For some, returning to the hospital site was challenging. One woman, who had been treated 20 years previously, found returning was "very difficult . . . I certainly hate being reminded" (014 BC). For another, the hospital grounds evoked many strong feelings: Overall, however, participants appreciated being at the cancer drop-in centre, describing it as "welcoming," "calm," and "relaxing." This latter quality was seen as especially important, especially if acu/moxa were to be made an adjunct to usual treatment for lymphoedema: Nevertheless, on the whole, participants appreciated having acu/moxa and described it as a "relaxing" experience. In spite of any discomforts associated with needling, having acu/moxa was preferable to biomedical interventions: The time and expense of attending for treatment was a concern for two participants: While there were no reports of adverse events of acu/moxa treatment, three participants found aspects of the study distressing. One, quoted above, found the whole experience of the study somewhat upsetting because she found it difficult to reflect on the painful experience of having breast cancer diagnosed twenty years previously. Two other participants found the need to remove their clothing distressing and discussed that they had not been prepared for this aspect of treatment: These participants, however, gave very positive accounts of subsequent treatments, and overall, most people had positive reports about participating in the research. Many of those who experienced difficulties with the setting, the travel involved, the discomfort of treatment, or the completing of questionnaires still reported deriving benefit from the experience.

Concepts of Wellbeing.
The primary purpose of this study was to ascertain whether acu/moxa could be used in lymphoedema management to promote wellbeing and improve quality of life. The treatments aimed to improve overall physical and emotional wellbeing, to reduce the impact of disabling symptoms, and to improve adherence to self-care. In the focus groups, questions about wellbeing began with an exploration of how participants defined the concept.
Three individuals articulated their thoughts very clearly about wellbeing, seeing it in terms of their general attitude to life:

It's feeling joyful about the world, I think, you want to go out and do things. (019 BC)
That you're more in control of what's happening to you. (018 BC) While others had difficulty expressing what the concept of wellbeing meant to them, subsequent descriptions of how they felt their lives had changed as a result of acu/moxa treatment revealed that they perceived it to have had a substantial and positive impact on aspects of their physical and psychosocial health.

Physical
Changes Associated with Acu/Moxa. Improved energy levels were experienced by many participants. For some, this was merely a short-term effect that dissipated, "as though you've charged your battery up and it gradually discharged down again" (009 HNT). For others, the effect was more enduring: One woman (005 BC), whose energy levels had been so low that she needed to go to sleep when she got home from work at 5.30 pm, reported a continuous improvement following the third treatment. As a result, she was able to stay awake and be active until 9 p.m. and later. For another, the renewed energy was linked closely with her general motivation to do things and a sense of things returning to "normality": Improvements in sleep patterns were also attributed to the acu/moxa treatments. For some, sleep that had been disturbed by other physical symptoms, such as chronic itching, night sweats, or chest infections, improved markedly when those symptoms were relieved. For others, sleep patterns that had gradually deteriorated for no apparent reason improved markedly after starting acu/moxa. One woman, who had suffered from recurrent nightmares since her cancer diagnosis ten years previously, found acu/moxa very effective in this respect: Other beneficial physical effects were reported, including relief of musculoskeletal pain, constipation, cold symptoms, thrush, dryness in the mouth, and cramps.
Participants felt able to discuss their physical ailments with the therapists and appreciated that the acupuncturists "could sort of tailor the acupuncture as to your specific needs" (001 BC), even if these were not directly connected to the lymphoedema: In some cases, a more long-term relief, especially from pain, was experienced. Such pain relief had a knock-on effect, improving overall quality of life and the ability to cope with chronic health issues:

Psychosocial Changes Associated with Acu/Moxa.
Some women, particularly those with family commitments, expressed the view that attending the acu/moxa sessions offered them the opportunity to have time for themselves, which they valued highly. A large number of participants spoke of acu/moxa being relaxing and a means of helping them deal with stress and chronic anxiety: I was quite an anxious person, and I found it helped me to relax and feel better in myself, not so anxious. It did help immensely, really. (021 BC) Once again, for some these benefits were short-term while others felt acu/moxa conferred a long-term benefit and a change in outlook: The therapists also fulfilled what participants called a "counselling role" during the sessions, giving them the opportunity to talk and to share their problems. Several patients described how they had felt able to talk about their concerns during the sessions; they were able to "offload" and "cry in front of" their acupuncturist. One man found this "counselling" role particularly helpful, as he did not feel it was appropriate to share all of his negative thoughts at home: (It is important to note that the term "counselling" is one used by the participants and not by the acupuncturists. While the acupuncturists had been trained in active listening skills, at no time did they promote themselves as counsellors.)

Empowerment, Control, and Acceptance.
Descriptions of how participants felt their lives had changed because of acu/moxa revealed that they perceived it to have had a substantial and positive impact on their wellbeing. The capacity to enjoy an active life, without feeling debilitated, and to feel motivated and in control was important to these individuals. For many, acu/moxa treatment facilitated the progress from being disabled by lymphoedema to enjoying enhanced wellbeing and improved quality of life, giving individuals a sense of empowerment and control. These benefits extended beyond the individual to affect family and social relationships: Acu/moxa could also be a catalyst that generated the motivation to take a more active part in self-care, necessary to manage a chronic condition like lymphoedema: In some cases, even when there had been no discernible change in the condition, participants felt that having acu/moxa had reduced their concern about the lymphoedema and enabled them to tolerate it more: I think we were always made aware from the very beginning, that it wasn't going to cure lymphoedema, and I was always aware of that and she always said 'this is to help the surrounding things that are in your life, that will aid the lymphedema ' 3.6. Degree of Change Attributed Specifically to Acu/Moxa. Within the groups, there were discussions about whether it was the acu/moxa per se or the time and attention they received that had led to the emotional and psychosocial benefits. Several participants said "I wasn't expecting anything," so they were "delighted when something happened" (018 BC, 019 BC).
One participant was medically trained and had been interested to find that her knowledge did not really explain the experiences she had during the acu/moxa treatment:

Perceived Experiences and Effects of Treatment.
Participants in this study initially regarded acu/moxa with some scepticism or as a last ditch attempt to improve their wellbeing when other therapies had failed. However, after treatment participants reported a range of changes to their overall wellbeing, most of which were positive, many of which were unexpected. Physical changes included improved energy levels and mobility, better quality of sleep, and reduced pain, as well as improvements in a range of other somatic symptoms. In some cases, symptom reduction meant medication could be reduced. Among the psychological benefits, alleviation of stress and chronic anxiety were reported as well as an increased ability to relax, which was highly valued.
Although not experienced by every participant, the emerging themes from these focus groups suggest that acu/moxa treatment enabled a transition from the sense of disempowerment brought about by cancer diagnosis and treatment and the associated sequelae, to a state of empowerment. Many participants described new feelings of control, confidence, and a sense of balance in their lives. Such changes enabled improved social functioning, such as in family relationships and the workplace. This wide range of reported outcomes associated with traditional acupuncture treatment is similar to those found in other qualitative studies [44][45][46][47]. The perceived benefits reported here are also supported by the quantitative findings of the trial [23], which demonstrated clinically and statistically significant improvements in individualised health status as measured by the Measure Yourself Medical Profile (MYMOP) [48,49]. Participants in the overall study had experienced a wide range of troublesome symptoms including anxiety, stress, feeling depressed, poor sleep, musculoskeletal problems, and other somatic symptoms. The cooccurrence of multiple symptoms in these participants is consistent with the symptom burden reported in both shortand long-term cancer survivors, with the consequent impact on quality of life [50][51][52].
Of particular interest are the perceived changes in lymphoedema-related symptoms which were the most frequently specified bothersome symptom on the MYMOP questionnaires [23]. Although it was clearly stated in the study documentation that acu/moxa treatment was not intended to treat lymphoedema itself, many participants reported improvements in their lymphoedema-related symptoms, including increased mobility and reduced sensations of heaviness, pain, and other discomforts. Many perceived decreases in swelling, although they were disappointed when measurement by the lymphoedema nurse specialist showed no significant changes in volume. Although this might suggest that participants merely experienced a shift in their perception of the problem rather than an actual physical change, this appeared to confer a substantial emotional and psychological benefit. Furthermore, the importance of reducing lymphoedema-related discomfort is highlighted by results of another study which found that, for breast cancer survivors, swelling and severity of lymphoedema were less correlated with quality of life than arm symptoms and pain, leading to the recommendation that clinicians should focus on arm symptoms and pain "as much if not more than arm swelling" [53].
Also of interest are the participants' descriptions of increases in their energy levels, a benefit that is often reported anecdotally by acupuncturists and increasingly reported in research [46,47,54].
These qualitative reports of changes in lymphoedemarelated symptoms and in energy are supported by the quantitative data from the main study. Analysis of the SF-36 health survey questionnaire [55] showed significant improvement on the Bodily Pain and Vitality scales for breast cancer participants at all measurement points up to and including four weeks after the end of treatment [23].

Using Acu/Moxa in the Management of Lymphoedema.
The participants in this study valued the whole-person approach of the traditional acupuncturists. That they were listened and responded to and that all aspects of their health were taken into consideration were of particular importance to the majority of participants, as was feeling cared for. In addition, they placed a high value on the fact that treatment was tailored to their individual requirements. These factors were also reported as being important to acupuncture patients in a range of other studies [44][45][46]54]. In a study of early breast cancer patients undergoing chemotherapy, Price et al. [47] report how these combined characteristics of traditional acupuncture treatment contribute to "enabling coping": that alleviation of symptoms and improved wellbeing lead to an improved mental outlook and increased ability to cope with cancer diagnosis and chemotherapy treatment. The emerging themes from this qualitative study echo those of Price et al. and also include the dimension of improved self-care, a necessary aspect of managing chronic conditions such as cancer and lymphoedema [1]. Building on observations made in our work with cancer survivors [23,56] we propose a model illustrating the potential for acu/moxa to improve long-term health (Figure 1). Participants in this study described a reduced symptom burden and improved energy levels as perceived benefits of their acu/moxa treatment. These outcomes feed into each other and in turn have the potential to improve motivation and self-care. This has a particular value for people with lymphoedema, as successful management of their chronic condition is crucially dependent on the quality of their daily self-care. In this way the potential outcome is improved overall wellbeing, which has a further potential of generating future cycles of improved self-care and enhanced wellbeing and thus the overall long-term health of the patient. It is important to regard acu/moxa as a process that enables transformation and improvement in overall wellbeing, rather than a magic bullet targeted at a specific symptom [57].
There is strong evidence to support the model set out in Figure 1. Participant 004 BC (quoted above) provides the clearest example of this, as she reports that acu/moxa treatment has been a catalyst for her enhanced self-care including her motivation to lose weight and to do her daily exercises. Others describe a more subtle transformation, reporting that improved wellbeing led to their increased ability to cope with daily life. The movement through this model can even be illustrated using a within-case analysis, although this was not the stated purpose of this study. One particular participant (003), for example, had experienced positive effects on her symptoms: At one point I couldn't get away from the lymphoedema because it was such an effort just to lift the arm, and it's not like that now. And I've got movement back.
Her motivation appeared to have increased, both in terms of being able to manage family commitments and in terms of protecting and caring for herself:

Strengths and Limitations.
This qualitative study has a number of strengths. It is the first qualitative study to explore lymphoedema patients' perceptions of acu/moxa treatment. Furthermore, it addresses overall wellbeing, rather than focussing on a single physiological symptom (usually reduction in swelling in lymphoedema studies). It also includes head and neck cancer survivors with lymphoedema, an underresearched group of cancer survivors.
Another strength of the study lays in the varied experience and expertise of the research team. As the qualitative researcher carrying out the focus groups (Anthea Asprey) had little knowledge either of acupuncture treatment or of lymphoedema, there was therefore a need for focus group participants to give very full accounts of their experiences and responses, resulting in very rich data. The expertise of the other two researchers in this study added insight into the interpretation of the data: Teresa Young has extensive experience of research into the supportive care of cancer survivors, whilst Beverley de Valois is an experienced acupuncturist and researcher with a specialist interest in issues of cancer survivorship including lymphoedema.
The study was restricted to English-speaking participants, and there was a lack of representation of the diverse ethnic population in the geographical area. However, considerable diversity in age, educational level, and duration of lymphoedema was obtained. Amongst head and neck cancer survivors, there was equal representation of both sexes.
The small size of the focus groups may have limited the total range of experiences in each group. The planned size of each group was six participants; small groups are easier to recruit and host and are more comfortable for participants [36]. However numerous factors contributed to running smaller groups, and ultimately we aimed for groups of four participants each. These factors included the ability of participants to attend on the dates that other resources were available, such as the qualitative researcher and meeting rooms at the hospital. Last minute cancellations and no shows, due to illness or work commitments, also impacted on group size, with one group reduced to two participants at short notice. Our decision on this occasion was to proceed with the focus group, even though it was small.
A further limitation is the lack of data about participants' concerns about safety. People with lymphoedema are advised to avoid accidental and nonaccidental skin puncture in the affected area [1] and this raises concerns for patients about the safety of acupuncture. In our study, participants were assured during the recruitment process that needling would be avoided not only in the affected area, but with a wide margin of safety (for breast cancer participants, needling was avoided in the torso as well as the arm on the ipsilateral side). By the time of the focus groups, the participants were accustomed to the idea of having acu/moxa with this wide margin for safety, so it was assumed to be no longer an issue for them.
Finally, it is important to acknowledge that participants who receive treatment in the context of a trial may differ from those attending for usual care.

Implications for Research and Practice.
Further research is needed to confirm and add to the findings presented here, which, in conjunction with the quantitative aspects of the entire study, are a necessary preliminary to conducting a randomised controlled trial. Aspects to consider in future study design include investigating the effects of combined acu/moxa as opposed to the more common focus on acupuncture needling alone. In view of the complex, multiple morbidities experienced by cancer survivors, the focus of research should encompass overall wellbeing, rather than isolating single symptoms, most specifically arm swelling in breast cancer survivors. As recommended by Price et al. [47], there is a need to develop research methods and tools that measure the whole-person treatment approach and effects for participants over time. In addition, further investigation into the role of acu/moxa in facilitating improved self-care is required.

Conclusions
This qualitative study indicates that acu/moxa has the potential to benefit some people with cancer-related upper body lymphoedema, who present with a number of symptoms related to, and in addition to, lymphoedema. Perceived benefits include physical and psychosocial changes that may be independent of the presenting complaint and may encompass improved self-care leading to longer term health improvement. Participants valued the aspects of traditional acu/moxa treatment, and many reported that it facilitated a transformation from the disempowerment of cancer diagnosis and the consequences of treatment to feeling empowered and in control of their lives.

Disclosure
The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health. The study sponsor had no role in the study design, collection, analysis, and interpretation of data; in the writing of the paper; and in the decision to submit the paper for publication.