Participants
The study comprised thirty-four male cancer patients who were using CAM, evenly distributed across the treatment sites: eleven from the oncology unit, twelve from the homeopathic hospital and eleven from the cancer charity. A broad spectrum was achieved across the sampling criteria. The age of participants ranged from 31 to 83 years, with a mean of 57 years. The spread across cancer type and stage of illness is shown in Tables
1 and
2. Participants were white and came from a range of manual, non-manual and professional occupational backgrounds. Over half were professional. Twenty-two participants had used CAM before their cancer diagnosis, for other health problems or for health maintenance, while for twelve participants, cancer had been the trigger to CAM use. Seven 'non-users of CAM' were also interviewed and they cited lack of knowledge and information about CAM as major reasons for non-use. Some non-users were sceptical about CAM but felt that CAM information and advice should be more readily available through the NHS.
Colo-rectal | 10 |
Prostate | 10 |
Lung | 3 |
Other (thymic, tonsillar, pancreatic, bone, lymphoma, bladder, renal, oesophageal, leukaemia) | 11 |
Localised | 10 |
Remission | 10 |
Metastatic | 8 |
Palliative care | 6 |
This paper will focus on those men who were using CAM. The types of CAM used by the men are shown in Appendix 1. All participants used CAM alongside their conventional treatment, except for one man who had refused orthodox treatment in favour of CAM therapies. The ways in which CAM was used and the perceived benefits are reported elsewhere [
16]. The focus of this paper is how the men sought, evaluated and used CAM information. Data illustrating each theme are mostly provided in tables 4 to 9, with some quotes illustrating key points interspersed within the text.
Men talked about the lack of CAM information available from the NHS and the difficulty in engaging in discussion about CAM with professionals they encountered during their conventional care (see Appendix 2). One man, who went on to access support from the CAM charity, described his frustration and sadness. 'I asked my oncology doctor are there any other avenues and the response was well there are one or two things but nothing has been proven and there's nothing very definite ... and I suppose that's what's I suppose is very sad ... I chose not to probe ... you can detect there is no inclination, no desire, no WANT to debate it or discuss it ... you get this very clear message' [age 64, oesophageal cancer in palliative care]. Another participant talked about the possibility of empowering patients by making CAM information accessible. 'I just think that information should be out there for people to make decisions and to let them know that it's there because even just on a pain level, because there's there are therapies out there which can help people with their pain management and if you can manage your pain that helps your process so much' [age 32, recurrent bone cancer].
The main resource for these men was the 'lay referral network' [
17]: personal stories and recommendations passed on by family, friends, work colleagues and other acquaintances, often provoked by a cancer diagnosis. Some responded to advertisements in local shops. Female family members played a significant role in steering men towards CAM, especially wives and daughters who had knowledge or personal experience of CAM (see Appendix 3). For example, this man reflected on the important role his daughter had played. 'I was lucky with my daughter .... How I would have done without her .... because she's been a nutritionalist for some time .... she's always been a health enthusiast but she's a realist, she believes in really a healthy diet and she doesn't mean filling you up with vitamins'
[age 74, colo-rectal cancer in remission].
The internet was rarely the first port-of-call for CAM information (see Appendix 4); in fact it was used more often to research conventional rather than CAM treatments. With regards to CAM, the internet provided the means to investigate a CAM therapy mentioned by an acquaintance, to order books or nutritional supplements or to find a CAM therapist via a professional organisation. Those who used the internet described how they were selective in their choice of web-sites, rather than pursuing general searches, as illustrated by this man, who stopped searching 'once I found the charity web-site ...which was very good because a lot of the people who were there have had the disease and a lot of the information is from people who've been through the same thing' [age 54, prostate cancer in remission].
A surprising proportion of the men lacked either the experience or the inclination to engage in internet searching and this was true across all ages. 'No I have not [used the internet] ... I have looked I mean there are dangers there I mean quite apart from all the trash that comes in trying to sell us Viagra and all sorts of things .... So no no I have not, I am very happy to take the advice and treatment offered by [holistic doctor] for example and the acupuncture as well!' [age 73, prostate cancer in remission]
Some of the older participants described how searches had been performed on their behalf by family members, such as this man: 'The internet, my wife's a bit of a dab hand on the internet and that, she's got an awful lot of information ... there's so much of it on there you know it sort of gives you some sort of hope when everything seems lost....
Q: Have you actually ordered anything over the internet?
No ... oh well the bush telegraph I mean is better than the internet really' [age 60, locally advanced lung cancer].
'Traditional' sources of information such as books, leaflets and the media were generally more popular than the internet (see Appendix 5). For example men responded to written information in the form of booklets provided by charities, Yellow Pages and mailshots. 'How I chose the ones [types of CAM] that I'm pursuing I went by this little book particularly to start with, having read the cancer BACUP book which listed them and a paragraph or two about each one .. and this book, the 'Which Guide to Complementary Therapies', I think I bought it from Waterstone's or somewhere like that ... and 'The Web that has no weaver' it's an attempt in some ways to reconcile Chinese and Western medicine' [age 65, metastatic colo-rectal cancer].
Stories about CAM and its proponents were frequently found on television and radio or read in newspapers and magazines. Books recounting stories of survival from cancer, or advocating anti-cancer diets and CAM therapies were passed around the 'lay network'. 'The friend from Australia sent me some tapes, meditation, visualisation tapes and a book by I.G. who's beat cancer in his own way, and I'm just interested to read his story, so I started off listening to these tapes and realising there's something in this, so I thought I need to go a little bit more in that direction so I went to the [private cancer charity]' [age 49, metastatic colo-rectal cancer].
Two key themes regarding information use emerged in the analysis. Data such as these, that are based on personal experiences, serve as an illustration of how a group of patients navigated their way through the CAM information available, some of which has been referred to as 'misleading' and potentially 'harmful' [
6]. The two main themes are as follows: First we will consider the role patients take in information seeking – whether they are pro-active seekers or passive recipients of CAM information. Second we will consider the types of evidence and criteria that patients use to evaluate CAM. The themes presented are supported by data reflecting the full range of expressed views (see Appendices 6 and 7).
Theme 1: Patients as pro-active seekers or passive recipients of CAM information
A willingness on the part of these men to be informed about CAM was linked to their desire to know as much as possible about their illness generally, including their conventional treatment options. Participants could be broadly categorised into those who actively sought out information about CAM (pro-active seekers) and those who took a more passive stance and simply picked up information that came their way (passive recipients) (see Appendix 6). Which role they took depended partly on their cancer type and stage of illness. Pro-active information seekers were often men with more rare cancers, fast-growing tumours or advanced disease. For these men, information about CAM included seeking out 'alternative' and potentially 'curative' treatments, especially if conventional treatments could no longer help them. Some men who were at earlier stages of illness or who had more common types of cancer, also took a pro-active approach but they more commonly searched for information about supportive or complementary treatments to be used alongside their conventional treatment.
Men's role in information gathering also related to the stage at which they had started using CAM. The men in this study fell into two broad groups: those who had used CAM prior to their cancer (the majority) and those for whom a cancer diagnosis was the trigger to CAM use. Those characterised as pro-active seekers of CAM were more likely to have already used CAM before their cancer diagnosis than to be 'new' users. 'Pro-active seekers' tended to embrace a wider range of therapies than those who were 'passive recipients' of information.
Those who could be characterised as 'passive recipients' of CAM information (just over one third of the participants) were equally divided between those who had used CAM for previous health problems and those who were 'new' users following their cancer diagnosis. CAM information was generally welcomed and acted upon, even if it was treated initially with scepticism. Passive recipients were (perhaps unsurprisingly) more likely to be drawn from the NHS recruitment sites rather than the private setting, and a few had in fact first heard about CAM from an NHS health professional, albeit in a very general way. They recounted how CAM therapies were sometimes suggested by a doctor or nurse in primary care, both prior to and since the cancer diagnosis: for example, a recommendation to try chiropractic for a back problem or homeopathy for cancer-related symptoms. Within oncology services, however, CAM was mentioned only occasionally in a non-specific way as a possible support for end-stage patients, but with no specific recommendations. As a result of these suggestions, in combination with encouragement by family members who had some experience or knowledge of CAM, some men were triggered into CAM use. However, in contrast to the pro-active information seekers who embraced a wide range of therapies, those with a more passive role in acquiring information tended to use only the therapy that they first encountered, for example taking nutritional supplements or attending the homeopathic hospital.
Participants reflected on their role in information gathering, some feeling that they had taken on either a pro-active or a passive role by choice, but others noting how they took up their position rather by default, because they felt it was their only option. For example, some described how the passive role sometimes arose as a result of the lack of open discussion about CAM within the NHS and the difficulty they experienced in raising the subject. Some speculated as to whether oncologists' reluctance to engage with the topic was driven by individual disinterest or scepticism, or by hospital policy.
Others, however, responded to the lack of CAM information available from NHS health professionals by taking on a pro-active information-seeking role. 'He [oncologist] was a bit offhand, wasn't really ready to give me much information, I had to sort of, you know, pump him shall we say .... I got the information out of him but it was a question of sort of pulling teeth if you like, if you didn't ask the question you didn't get told was the impression I got' [age 52, localised prostate cancer]. Some willingly took on this role, whereas others found it difficult on several counts. First: they found it difficult to formulate questions about CAM within consultations, not knowing what or who to ask and what clinicians' reactions would be. Second: they were reluctant to go outside of conventional medicine to seek information and support regarding CAM, having the hope and expectation that CAM information would be more easily available within the NHS and expressing disappointment when it was not. Third: they wanted a stamp of approval from NHS professionals regarding the CAM therapies they chose to use, preferring those that would be seen as medically 'legitimate'.
As a minimum, many of the men felt that NHS professionals should adopt a 'sign-posting' role, even if they did not provide detailed information on CAM, for example by providing a list of CAM information resources and practitioners. Amongst the pro-active information seekers there was also a minority who preferred to look outside the NHS for CAM information and were seeking 'alternative' approaches to their illness and its treatment.
Whether men took a 'pro-active' or 'passive' approach to gathering CAM information may partly be explained by their underlying general attitude towards information about their condition. 'Pro-active' seekers generally regarded information as a tool for empowerment, whereas the more 'passive' approach was typical of men who perceived information as potentially unsettling or anxiety provoking. 'Empowerment' was experienced as getting a better understanding of the illness and its treatment that enabled participants to make informed contributions to treatment decisions or to engage in self-care. 'I said thank you very much that's great and I've been really wanting this information, I'm not ready for an operation yet, I feel good, I'm not ready for one, I'm thinking of moving and he was a bit put out at that, this person, given all this information, and he doesn't want, he said well OK he said I really advise that we should operate as soon as possible before it gets too big' [age 43, recurrent bone cancer].
Some wanted very detailed information such as survival statistics, personal prognosis, tumour grading, details of surgical procedures or wished to view their scans. They also sought information about psycho-social support, to help them deal with either living or dying with their disease. CAM information in particular was perceived as 'empowering' as it led to opportunities for self-care and gave feelings of control and hope in a potentially fearful and life-threatening situation. Such information broadened their treatment and supportive care options in ways that they weren't routinely getting in their NHS care. For many, finding out about CAM was a strategy to fill perceived gaps in their conventional care [
16].
Amongst the 'passive recipients' of information were some who were wary of finding out too much about their condition for fear that the information would bring with it added anxiety, responsibility and stress, with further decisions to be made. They had clear boundaries around what they wanted to know and reported feeling overwhelmed if confronted with 'too much' information. They viewed information as 'unsettling' with the potential to disrupt their fragile ability to cope and they preferred to focus on what lay immediately ahead of them. Information brought to them by well-wishers could be seen as an unwelcome intrusion. 'The worst for me was people bringing me sheets of paper [from the internet] at work and you read them and think I'm not going to go through that and there was so much ... trouble is you read 'Cancer' and all you read about is people dying, the local paper are doing a series about it, one in four people getting over it, four out of ten are going to die and that's what the internet is it's instantly that you go in and you think you're better off getting treated in Australia or there's America, and its pages long' [age 54, prostate cancer in remission].
The boundaries between the categories of 'passive recipient' and 'pro-active seeker' were inevitably fluid and there was evidence of change over time as men's interest in CAM grew and their approach to acquiring information evolved over time. Some of those who were initially 'passive recipients' of CAM information shifted roles to become 'pro-active seekers' as they acquired information about CAM and developed an interest in finding out more. Some men who were initially sceptical about CAM changed their views and adopted CAM as part of their overall treatment and support strategy. They described a growing awareness of stories and issues relevant to cancer and its treatment (both conventional and CAM) as they lived with their condition. Others found their interest in CAM initially stimulated by the chance reading of a magazine article or an inspirational book lent by a friend which then triggered them into a more active role in finding out about CAM.
Once men started actively seeking CAM information, a process of 'snowballing' took over as networks of resources were uncovered. 'A lot of books, research on the internet, all kinds of articles, as soon as you've got cancer you come across other people who know about other people and relatives and the like who've been through it all and they say oh have you seen this book, seen this article, look at that website, you end up with a mountain of information' [age 51, tonsillar cancer palliative care].
Theme 2: Types of evidence: patients' criteria for evaluating CAM information and therapies
Patients used a variety of forms of 'evidence' to make judgements about CAM and whether they would use a particular therapy. Rather than a wholesale acceptance of all types of CAM, the men in this study described how they attempted to be discerning in evaluating the information available, in order to choose the type of CAM that might suit them. They were usually very selective in identifying a particular CAM for a particular problem and were often sceptical about other therapies. For example many men were wary about any form of therapy that involved participation in a group, one man expressing this as distaste for 'hand-holding and all that sort of thing'. Within the array of information available to them, patients tended to use forms of 'evidence' that made sense to them and were personally meaningful: often quite different from the types of evidence traditionally valued by clinicians (see Appendix 7). The types of criteria and evidence that patients drew upon to evaluate CAM included the following:
Personal stories
Participants were particularly impressed by the evidence of personal stories about individuals, including family members, who had been helped by CAM, often for complaints other than cancer. Biographies of cancer survivors who had used CAM were regarded as inspirational, mainly as a model for personal self-help rather than giving patients belief in a 'cure'. 'She was diagnosed with breast cancer and ... decided to do something about it and therefore looked at the total bit not only her mental attitude but her diet her exercise, did everything, meditated, got in touch with her spirituality did absolutely everything that she could do to make herself better to rebuild her immune system and to fight the disease and she was successful doing that for twenty years' [age 43, lung cancer in remission]. Such stories were sourced in books, the internet, leaflets, newspapers and magazines. Some regarded their own story of survival to date as 'living proof' of the effectiveness of CAM in combination with conventional treatment. Other pointed to specific benefits they were experiencing themselves as sufficient evidence of the effectiveness of their chosen CAM therapy.
History
A common criterion for judging the quality and likely effectiveness of a CAM therapy was its history. The long history and enduring popularity of many therapies, for example herbal remedies and acupuncture, were often perceived as indicators that they benefited patients. Participants were also more inclined to view CAM therapies positively where there had been a history of using herbal or other 'natural' products over many generations within their own family. 'I used to have cod liver oil and malt as a kid I remember my mother ...but that [supplement] does help your joints definitely ... there was no proof I don't think in those days, you just you did that you know, if you sting yourself, rub a dock leaf on it ...one shouldn't say a treatment is no good because it hasn't been scientifically proved' [age 83, locally advanced prostate cancer].
Plausibility
Participants gave weight to the 'plausibility' of a CAM therapy as discerned from the information they had gathered and they would only try a therapy that seemed plausible in its mechanism of action. This was very much an individual judgement and depended on their conceptualisation of the particular therapy. For example some had no belief in the proposed mechanisms of action for acupuncture, while others believed it might work via the nervous system and others believed it worked via the flow of energy. Where people had a belief in the power of the mind to effect physiological change, they might be more inclined to accept therapies that had a 'mind-body' dimension, for example visualisation, meditation or hypno-therapy. 'Relaxation, hypnotherapy side of things which again seemed to be suggesting I mean they're all different names for the same thing meditation, relaxation, hypnosis, that the sub-conscious can in fact have quite profound effects on physiological processes' [age 65, metastatic colo-rectal cancer].
Men with a scientific background found it easier to accept the use of herbal remedies or nutritional supplements, likening them to allopathic drugs synthesised from natural products. One scientist was convinced that homeopathy and acupuncture were plausible, based on evidence he had read regarding their effectiveness in animals, thus implying that the effects were more than placebo.
Belief and trust in therapies and their providers
While the majority of participants were using CAM outside the NHS, they often expressed a preference for CAM to be provided via the NHS since this is a trusted source of care and brought with it a 'stamp of approval'. Some requested referral to the NHS homeopathic hospital, which was made easier where they had a prior relationship with a GP with an interest or training in CAM. Such GPs became a resource for CAM information and referral. In the absence of NHS endorsement, participants placed their trust in CAM therapists who had recognised qualifications and professional registration, or who worked at well-known centres. 'If they did advertise or there was leaflets in hospitals then at least they could have a maybe a list of people what have been checked out or that they know they've done the qualifications and the certificates are alright and not just someone, you see it so often on the telly about these fake doctors and everything that just print their own certificates' [age 43, locally advanced colo-rectal cancer].
Enduring engagement with a CAM provider, however, depended more on the personal qualities and experience of the provider and the therapeutic relationship than on their formal qualifications.
The same desire for seeking 'approved therapies' was evident in the way participants sought out information from the internet. The majority approached the internet with caution, choosing only to visit medical, professional or charity websites and steering clear of more commercial sites. 'I think one of the things you've got to realise is that whoever's web page you're on is probably promoting their product ... you can sort of dodge around and look at various sites, cross-reference them so, yeh so it is useful' [age 61, prostate cancer in remission].
However, professional authentication was not the only 'quality label' that impressed would-be CAM users. Therapies were seen as legitimate or credible if recommended by trusted individuals, be they friends, family members or CAM therapists. Some preferred to trust their own inner judgement and relied less on external markers of credibility, describing for example how they acted 'in faith' or relied on 'gut instinct'. A minority actually valued the independence of private CAM provision from the NHS, expressing preference for the 'alternative' philosophical approaches that under-pin some therapies. Despite this orientation towards more alternative approaches, these men too talked about using the internet in a discerning way and were critical of websites giving treatments that did not seem credible to them.
Scientific evidence
A common belief among the men studied was that lack of scientific evidence did not equate with lack of effectiveness. On this basis, they were prepared to give CAM therapies the benefit of the doubt. Some men, notably those from a scientific background, reflected on methods used to study CAM and conventional treatments, identifying what they saw as the limitations of conventional drug trial evidence. Their concerns were that such trials report average rather than individual effects and can under-estimate long-term safety considerations. Several expressed the belief that scientific methods were not always appropriate to evaluate CAM since some therapies pre-dated the advent of the scientific approach and are based on radically different philosophies and mechanisms of action. Whilst recognising that scientific evidence of effectiveness would be beneficial to attract funding or support for CAM within NHS, the lack of such evidence did not stop them personally using CAM. 'I don't think I'm bothered by the scientific proof about them but I would be willing to try them, it's maybe the person who's dispensing them I need to know that they're ... I would prefer to do that than just try things willy nilly go round trying things, I need to try things for a reason' [age 56, non-Hodgkin's lymphoma in remission]. The benefits of some therapies, such as diet and relaxation, were seen to be common sense, thereby excluding the need for 'scientific proof'. Scepticism about the influence of the pharmaceutical companies in promoting certain drugs and marginalising 'alternative' treatments was common.