Men with cancer: is their use of complementary and alternative medicine a response to needs unmet by conventional care?

INTRODUCTION

The increasing popularity of complementary and alternative medicine (CAM) among cancer patients has been well documented (Ernst & Cassileth 1998; Molatossiotis et al. 2005). Studies show that patients use these therapies to help with side effects of treatment, for psychological support, to feel more ‘in control’ of their situation, to maintain a positive hopeful attitude and to adopt an active coping style (Astin 1998; Sollner et al. 2000; Sparber et al. 2000). Previous research has suggested that patients turn to CAM partly as a result of dissatisfactions with conventional care (Furnham & Vincent 2003), particularly in the treatment of chronic diseases (Thomas & Coleman 2004), but it is not clear whether this is the case for patients facing a life-threatening disease such as cancer.

‘CAM’ is an umbrella term that covers a range of complementary therapies and alternative treatments. The role of some complementary therapies such as massage, reflexology and meditation in supportive cancer care has been recognized in cancer policy (National Institute for Clinical Excellence 2004), but the wider use of ‘alternative’ treatments and cures remains a cause for concern among healthcare professionals owing to their potential for harm (Ernst & Cassileth 1999). Therefore, it is important that health professionals and patients develop a dialogue about CAM decision making and potential side effects (Singh et al. 2005). In this paper, the term ‘CAM’ is used to cover all non-conventional treatments, and the focus of the study is men with cancer, since they have been the subject of less qualitative research than women (Balneaves et al. 1999; Canales & Geller 2003).

Men are generally reported to be lower users of CAM than women (Sparber et al. 2000; Smith 2004), although surveys suggest that 30–65% of prostate cancer patients adopt some form of CAM (Diefenbach et al. 2003). According to a recent American survey, use of CAM to have a sense of control over recovery was more evident in prostate cancer patients than in women with breast cancer (Hann et al. 2005). Other studies reveal a limited understanding of the motivations of men, suggesting that ‘complex psycho-social dynamics’ (Wilkinson et al. 2002) lead men to use CAM.

Men have been reported to adjust less well than women to a cancer diagnosis (Fife et al. 1994), and this may be due to a reported tendency of men to be more reticent and less willing to discuss emotional and psychological issues (Moynihan 2002). As a result, their psycho-social needs may be overlooked in clinical consultations (Moynihan 2002). By using CAM, men are effectively taking their needs outside the conventional system, and an understanding of why they do so may give some insight into the nature of their unmet needs. The different ways in which men and women use CAM may be important information for clinicians, since they ‘may reflect differences in their psychological needs as they cope with their cancer diagnosis and treatment’ (Hedderson et al. 2004).

Few studies of CAM use have involved men with types of cancer other than prostate, and little work has been done outside North America. The present study aims to address these gaps by using in-depth qualitative interviews to investigate CAM use among a sample of men with a range of types of cancer in one part of the UK. We aim to investigate why men choose to use CAM, and the extent to which CAM is used to fill ‘gaps’ in conventional care provision.

PATIENTS AND METHODS

A qualitative research design was used in order to explore the processes shaping men’s decision making about CAM, and the rationales they provide for their views and behaviour. The research focused in depth on a purposeful sample of men with a recruitment strategy aimed at maximum variation (Patton 2002). Men were recruited from contrasting settings: a National Health Service (NHS) oncology unit (n = 11), an NHS homeopathic outpatient clinic (n = 12), and a private cancer charity specializing in CAM therapies (n = 11). Men were included with a range of cancer types, at varying stages of illness and treatment, and who potentially held a range of views on CAM. At the oncology outpatients’ clinic, the participating oncologist invited patients with an interest in CAM to meet the researcher after their appointment. The researcher used a short face-to-face screening questionnaire to confirm their CAM use and gained informed consent for the study. The definition of ‘CAM’ included special diets and also the use of counselling, psycho-therapy or exercise if received within the context of cancer care. At the homeopathic clinic and cancer charity, all male patients currently attending were invited by their clinician or therapist to participate in the project, and they subsequently met the researcher who gained informed consent.

Semi-structured interviews were carried out in participants’ homes. A brief follow-up interview was conducted 6 months later, either face-to-face or over the telephone, at the participant’s preference. Core topics were covered in all interviews, to ensure comparability, but participants were also able to pursue areas of interest to them. The core topics included: the history of their current illness, experiences of conventional cancer treatment, views and experiences of CAM use before and during cancer. Interviews were recorded and fully transcribed.

Data collection and analysis took place alongside each other in an iterative fashion, with preliminary analysis of earlier interview data informing the questioning in subsequent interviews (Pope et al. 2000). The analysis was initially shaped and informed by ‘sensitising topics’ derived from the literature and the study objectives (Charmaz 2002), but new emergent themes were also explored, ensuring that the analysis was grounded in the data. The data were analysed thematically, drawing on the principles of ‘constant comparison’ (Strauss & Corbin 1998), where data elements are continually compared to generate core categories and themes. Attention was given to both confirming and disconfirming perspectives across all the transcripts, giving attention to minority as well as majority views (Pope et al. 2000).

The project researcher (M.A.E.) took the lead in coding and analysing the data, but a subsection of the transcripts was independently coded by another member of the team (A.R.G.S.), and the coding framework discussed and agreed. Members of the steering group also read sections of some transcripts and commented on the emerging coding strategy. The researcher used the qualitative data management software ‘Atlas.ti’ (Atlas.ti Scientific Software Development GmbH, Berlin, Germany) to aid the organization and coding of the interview data. Recruitment of subjects continued until ‘data saturation’ was reached with no new themes emerging in the analysis.

RESULTS

Thirty-four CAM users were recruited and interviewed. Thirty-one received a follow-up interview 6 months later; of the remaining three, one was too ill, one had died, and one could not be contacted. Details of the sample are given in Table 1.

One study participant had refused conventional curative treatment in favour of alternative approaches; the rest had all used CAM alongside conventional treatment. Complementary and alternative medicine (CAM) therapies used are listed in Table 2. They included supplements and remedies available over the counter or via mail order, treatments with individual therapists and attendance at group sessions. Some participants chose to use only those therapies available via the NHS, which gave them a ‘stamp of approval’, for example the homeopathic clinic. The majority, however, looked outside the NHS. When more invasive CAM treatments were used, such as ‘alternative cures’, herbal remedies or dietary programmes, men seemed to be aware of the potential safety concerns regarding such treatments in parallel with conventional treatment, and they recognized the importance of disclosing CAM use to clinicians.

Our understanding of the factors influencing use of CAM by men in this study can be summarized under two themes: Why CAM? and Why now? These themes are supported by illustrative quotes, reflecting the full range of views expressed by participants.

DISCUSSION

Men in this study were using CAM as a response to psycho-social needs as well as a need to actively ‘fight’ the disease and prolong life. The influence of psychological response on cancer survival and the importance of psychological intervention has recently been highlighted by a longitudinal UK cohort study (Watson et al. 2005). A hopeless/helpless response to diagnosis exerted a significant negative effect on disease-free survival for up to 10 years among a cohort of breast cancer patients. Although it was a study of women, it is another indicator of the importance of positive psychological input such as that experienced by the men in our sample through their use of CAM therapies.

The evidence base for the effectiveness of CAM for psychological support and symptom control in cancer is beginning to develop. For example, the Cochrane review of the evidence of aromatherapy/massage for cancer patients concluded that ‘Massage and aromatherapy massage confer short term benefits on psychological wellbeing, with the effect on anxiety supported by limited evidence. Effects on physical symptoms may also occur’ (Fellowes et al. 2004). Cochrane reviews are currently underway for homeopathy, acupuncture, reflexology and mistletoe for cancer patients. In addition, the results of some smaller studies suggest that psychological support such as group psychotherapy (Blake-Mortimer et al. 1999), or mind–body techniques such as relaxation and hypnotherapy (Walker et al. 2000), may prolong survival in some patients.

Decisions by the men in this study to use CAM were multifactorial, and resulted from ‘pragmatic’ choices in order to fulfil emerging health needs arising out of their cancer and its treatment. Wholesale dissatisfaction with conventional treatment was not a primary driver for CAM use, as the men continued to engage with the conventional treatments on offer. However, our study points to the need to distinguish between conventional cancer treatments and the care process since it is in the latter area where men’s needs remain unfulfilled, and these contribute to their use of CAM. Complementary and alternative medicine may provide a vehicle for men to communicate their need for comfort, emotional and psychological support. Previous research suggests that men who are not encouraged to do so may become depressed or anxious, conditions which may persist long after treatment ends, with a subsequent reduction in their quality of life. Some men in our study had experienced a lack of empathy and support during treatment, as well as a feeling of loss and abandonment when discharged from follow-up. The skills of CAM therapists may enable them to tap into the underlying needs of men in a way that health professionals do not have either the time or the skills to achieve, and in this way men may enjoy better supportive care and quality of life through accessing CAM. It has also been suggested that men respond well to ‘instrumental’ support (Gordon 1995), whereby they can make external changes, adopt a self-help approach or have something practical to do which might enhance their sense of control. This was evidenced in this study by the popularity of dietary changes, use of food supplements and herbal remedies, as well as visualization techniques.

To what extent could patients’ needs that underpin their CAM use be effectively addressed within conventional health care? A more holistic approach to care that embraces patients’ psychological, emotional and spiritual needs, with an emphasis on supportive listening, advice on lifestyle and self-help may not require the specialized attention of a CAM practitioner. However, wherever the boundaries of conventional care are drawn, there may always be some patients who seek added value by going outside the orthodox system. Some men in the study described using CAM in addition to conventional medicine as giving them a ‘double chance’ of getting better. The younger men in our study tended to take a more pro-active role with regards to both their conventional and CAM treatment choices, and this culture of patient choice and participation in decision making is likely to increase as it is actively promoted by recent health policy (Department of Health 2003, 2005).

If a comparison is made with studies of women with cancer, some of our findings mirror those from studies of women, such as the use of CAM as a way of taking personal responsibility for health and of participating more actively in treatment. However, there are some differences. Qualitative data from this and other studies suggest that the use of ‘anti-cancer’ or ‘health maintenance’ remedies in the form of ingested tablets or preparations may be more prevalent among men, with ‘touch’ therapies such as massage and shiatsu being more popular among women. The plethora of CAM remedies available over the counter, by mail order or through the Internet may offer a particularly attractive self-help resource to men who, compared with women, may be less confident about expressing their needs to health professionals, and may even experience ‘guilt at using resources’ (George & Fleming 2004).

There may also be differences between men and women in their attitudes towards CAM. Some studies suggest that women have a greater orientation towards a holistic approach to health and illness (Boon et al. 2000), while men take a more ‘mechanical’ view of the body and illness and are less likely to be drawn to CAM because of their beliefs (Boon et al. 2003). Many men in this study were responding to specific health needs, taking a ‘pragmatic’ or ‘consumerist’ approach to CAM use, without necessarily embracing the underlying holistic philosophy. This finding concords with a recent Australian study suggesting that the decision to use CAM is essentially ‘pragmatic’, an attempt to boost immunity and enhance overall quality of life, and, as such, should be treated in a ‘non-judgemental way by clinicians’ (Correa-Velez et al. 2003).

Male cancer patients, their use of CAM and their psycho-social needs remain an under-researched area, and studies that take a longitudinal perspective are particularly needed. Cancer has recently overtaken heart disease as the number one cause of death among men in the UK (Cancer Research UK 2004), so there will be an increasing pool of men with cancer, potentially seeking CAM. Patients are also living longer with cancer and needing support over longer periods of remission, issues that must be addressed by providers of conventional cancer care.