Complementary and Alternative Medicine CAM is increasingly popular with cancer patients and yet information provision or discussion about CAM by health professionals remains low. Previous research suggests that patients may fear clinicians' 'disapproval' if they raise the subject of CAM, and turn to other sources to acquire information about CAM. However, little empirical research has been conducted into how cancer patients acquire, and, more importantly evaluate CAM information before deciding which CAM therapies to try.
Qualitative study, comprising semi-structured interviews with 43 male cancer patients of varying ages, cancer type and stage of illness, 34 of whom had used CAM. As a result of the lack of CAM information from health professionals, men in this study became either 'pro-active seekers' or 'passive recipients' of such information. Their main information resource was the 'lay referral' network of family, friends and acquaintances, especially females.
Views on the internet ranged from enthusiasm or healthy scepticism through to caution or disinterest. CAM information was generally regarded as 'empowering' as it broadened treatment and self-care options. A minority of participants were information averse fearing additional choices that might disrupt their fragile ability to cope. There was general consensus that CAM information should be available via the NHS, to give it a 'stamp of approval', which combined with guidance from informed health professionals, could help patients to make 'guided' choices.
However, a small minority of these men valued the independence of CAM from the NHS and deliberately sought 'alternative' information sources and treatment options. Men were selective in identifying particular therapies to use and sceptical about others, basing their choices on forms of 'evidence' that were personally meaningful: personal stories of individuals who had been helped by CAM; the long history and enduring popularity of some therapies; the plausibility of the mechanism of action; a belief or trust in individual therapies or their providers; scientific evidence.
These male cancer patients valued the support and guidance of 'trusted individuals' in making choices about CAM. Trusted health professionals could also play a significant role in helping patients to make informed choices. Any such dialogue must, however, acknowledge the different standards of evidence used by patients and clinicians to evaluate the benefits or otherwise of CAM therapies. Such open communication could help to foster an environment of mutual trust where patients are encouraged to discuss their interest in CAM, rather than perpetuate covert, undisclosed use of CAM with its attendant potential hazards.
A culture of 'pervasive silence' and 'professional disinterest' has been described in relation to CAM, so patients may be reluctant to raise the subject in case health professionals 'disapprove' [ 4 ]. Clinicians and nurses are rarely cited as a source of information about CAM [ 2 ], leaving the field wide open for patients to explore other, potentially less reliable, avenues. For example, much has been written about the increasing popularity of the internet as a source of health information [ 5 ], allowing unregulated access to 'unproven' and potentially harmful treatments [ 6 ].
Little empirical research has been conducted, however, on what sources of CAM information cancer patients actually use. Some studies have suggested that, despite the advent of the internet, 'traditional sources' of information are still important to cancer patients seeking disease-related information [ 7 ] and that preferences for different forms of information may be related to ethnicity and educational level [ 8 ].
With regards to internet use, one author found that patients displayed 'considerable caution and competence' in handling information about their condition obtained in this way [ 9 ]. We do not know whether the same applies to patients' handling of information about CAM therapies.
There is also little understanding of how CAM information is used and evaluated by patients in their decisions whether to try CAM and which therapies to use. Patients may be using evidence based on very different notions of 'therapeutic efficacy' compared to clinicians [ 10 ].
Research suggests that patients tend to use 'anecdotal' rather than 'scientific' evidence and this may impact on the ability of professionals and patients to 'develop a dialogue about CAM decision making' [ 11 ]. This study focuses on use and evaluation of CAM related information by male cancer patients. It draws on qualitative data from a larger study of male cancer patients' attitudes towards and use of CAM. Previous studies have shown that male cancer patients tend to request support and information about their condition less than women, both within consultations and from other sources [ 12 , 13 ].
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Thus it is important to investigate what sources of information are preferred by men, and whether, in fact, the reported popularity of the internet has impacted on their knowledge about CAM. This paper focuses particularly on how male cancer patients obtain, evaluate and use CAM information, drawing out some implications for information provision and patient-professional communication. A qualitative research design was used in order to explore the processes involved in gathering and evaluating information about CAM from the perspective of men with cancer.
Purposeful sampling [ 14 ] was used with a recruitment strategy aimed at maximum variation with regards to age, cancer type, stage of illness and potential attitudes towards CAM. In order to identify men who potentially held a range of views about CAM, they were recruited from three contrasting settings: an NHS oncology centre where CAM users were identified in outpatient clinics using a short screening questionnaire , the outpatients clinics at a NHS homeopathic hospital and a cancer charity providing CAM therapies paid for privately.
A small sub-sample of patients who had never used CAM was also recruited. Semi-structured interviews were carried out with participants in their own homes, covering a range of topics relating to their use of CAM.
The topics reported here include: how information on CAM was obtained; which sources of information were most useful; how this information was used in decisions about using CAM. Interviews were recorded and fully transcribed and the data were analysed thematically, drawing on the principles of constant comparison [ 15 ]. ME took the lead in coding and analysing the data, aided by the qualitative analysis software Atlas. AS read and coded a sub-set of the interview transcripts from each recruitment setting, and met with ME to discuss the developing coding framework and agree on broad themes.
Members of the steering group also read sections of some transcripts and commented on the coding framework. 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.
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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.
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 chose not to probe Another participant talked about the possibility of empowering patients by making CAM information accessible. 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. How I would have done without her 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 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.
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! 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 For example men responded to written information in the form of booklets provided by charities, Yellow Pages and mailshots.
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'. 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.
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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. 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.