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Self-care and CAM: defining the differences, recognising the similarities
Self-care is promoted as an integral part of a ‘patient-centred health service’. But how is self-care defined? And when is CAM considered self-care? Some of the basic tenets of self-care and of CAM are compared to highlight similarities. CAM appears to have a primary role in chronic, poorly defined and difficult to manage conditions. Patients with these conditions seek self-care options and frequently choose to use CAM. Choice is affected by cost and accessibility. Feasibility in practice and personal recommendation also play important roles in decision-making.
Self-care has been highlighted as an integral part of a ‘patient-centred health service’ and is defined as:
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Complementary and alternative medicine (CAM) comprises a diverse range of approaches, philosophies and individual therapies. But there are certain common features that are particularly relevant to self-care. For example, one of the attitudes said to be shared by CAM approaches is that they place ‘as much emphasis on psychological and preventive care as on the treatment of pathologies’. Emphasis is also placed on the individual’s choices and preferences: access to the majority of CAM therapies is self-sought while during treatment there is considerable effort to develop an effective and ongoing ‘therapeutic relationship’ or partnership between the patient and practitioner.
In many cases, the patient is introduced to a range of possible actions including lifestyle changes to manage or improve their condition and general wellbeing. For example, for individualised self-help acupuncturists see advice as an integral part of treatment and it is embedded in the acupuncture diagnosis. In fact, patients expect to receive self-help advice as part of a CAM intervention and this expectation is an important factor in the decision to seek CAM treatment.
Common features of CAM and self-care
• Focus on a range of needs (not solely health).
• Emphasis on prevention of illhealth and promoting wellbeing.
• Dependent on patient preferences and choices.
• Takes place mainly outside the conventional health care context.
When is CAM self-care? The spectrum of care
Recent guidance documents from the Department of Health present healthcare as a spectrum which extends from ‘100% self-care’ such as the action of brushing teeth regularly to ‘100% professional care’, in this case the example being neurosurgery. Between the two ends of this spectrum is shared care defined as the situation ‘where individuals or families partner with practitioners in the care of the individual’.
However, there are differing perspectives on the concept of self-care. In a recent systematic review on self-care activities among adults in the UK, studies on self-testing, over-the-counter medicine, private care, CAM and home blood pressure monitors were all included. 6 The authors’ rationale was two-fold: firstly, that they can all be initiated without the involvement or recommendation of a conventional health professional; secondly, that they require the user to take an active role. So ‘the actions people take for themselves’ might include purchasing medications or treatment or diagnostic or monitoring equipment or kits, visiting non-NHS CAM practitioners for treatment or attending classes to learn a technique.
The Cochrane Collaboration defines complementary medicine as ‘all such practices and ideas which are outside the domain of conventional medicine… and defined by its users as preventing or treating illness, or promoting health and well being’. The similarities with the Department of Health’s definition of self-care are apparent – and clearly there is, at the very least, a significant overlap between the two fields – but the overall role of CAM in self-care is not necessarily a clear one.
Who chooses self-care and why?
The review of self-care by Ryan and colleagues 6 located 49 relevant UK studies suitable for inclusion, 30 of which were on the use of CAM. Analysis of the users confirmed previous studies: people who use CAM are usually female, middle-aged and affluent and/or educated. Interestingly, users of over-the-counter (OTC) medicine have a similar profile, and both groups were found to have some measures of poor health. Anecdote and opinion played a crucial role in decision-making: therapies were chosen primarily because of personal recommendation or previous experience by a friend or family member.
Conventional medicine’s perceived disadvantages –rushed appointments, long waiting times, over-reliance on drugs, and limited effectiveness in solving particular health problems – were cited as reasons for seeking out other options. Conversely, the perceived effectiveness of CAM in specific conditions and the wish for ‘sensitive practitioners with interest and time to listen’ were contributory factors for selecting CAM rather than conventional medicine. It seems significant too that, compared with general practice patients, CAM patients had healthier lifestyles and were more likely to believe they were responsible for their health or less likely to believe that doctors controlled their health.
Self-care, CAM and specific conditions
It has been suggested that CAM is generally more relevant in chronic, psychosomatic and non-specific conditions, while conventional medicine is more successful in acute, traumatic and specific conditions. This idea has been supported by subsequent research, and the potential for CAM to fill some of modern medicine’s ‘effectiveness gaps’ was highlighted by Fisher and colleagues in 2004. Interviews with 22 London GPs highlighted gaps in the management of various conditions: chronic musculoskeletal problems, depression, eczema, chronic pain, and irritable bowel syndrome, anxiety/stress, headache, perennial rhinitis. A survey of CAM organisations on the conditions that were most likely to benefit from CAM therapies resulted in a similar list. Conditions considered to benefit most were: stress/anxiety, headaches/migraine, back pain, respiratory problems, insomnia, cardiovascular problems and musculoskeletal problems.
In both studies, the response rates were relatively low but there does seem to be some agreement between conventional and CAM practitioners on the potential role of CAM. This appears to be primarily in the management of chronic, often ill-defined conditions for which effective conventional treatment is currently unavailable.
Chronic fatigue
Chronic fatigue syndrome (widely known as myalgic encephalomyelitis or myalgic encephalopathy) (CFS/ME) is a relatively common condition affecting at least 0.2 to 0.4% of the population in the UK. The aetiology remains unexplained but the condition can cause prolonged illness and disability that substantially affects patients and their families. Management has proved a challenge to conventional medicine; drug treatment is relatively unsuccessful while therapies such as counselling and cognitive behavioural therapy (CBT), although apparently effective, are not widely available nor fully evaluated in primary care. Diagnosis of the condition is also problematic – there is no definitive test for CFS/ME – so that it is primarily a diagnosis reached only once other causes of prolonged fatigue have been excluded. Consequently, one would expect use of CAM by people with this condition to be high. And indeed this appears to be the case.
One large-scale survey from the US investigated CAM use in ‘chronic fatiguing illness’. It included people with prolonged fatigue (one to five months duration), chronic fatigue (at least six months duration), and ‘CFS-like’ conditions (chronic fatigue not alleviated by rest and accompanied by at least four of eight recognised CFS symptoms). CAM use was extremely high (81.6%) in the fatigued groups but was also high in the non-fatigued group (72.5%). On average, 37.5% discussed CAM therapy use with their physician but this ranged from 26.1% in the non-fatigued group to 57.6% in the CFS-like group. Individuals previously diagnosed with CFS reported more CAM use than people with fatigue who were not diagnosed with CFS. Body-based (chiropractic and massage therapy) and mind-body therapies (imagery/visualisation therapies, mindfulness based practices, relaxation techniques) were significantly more likely to be used by those with chronic fatigue or CFS-like illnesses, compared to non-fatigued controls.
An insight into how CAM use fits into self-care is provided by more in-depth research with CFS patients. Such a study was conducted by Edwards and colleagues 13 who interviewed eight participants of a self-help group in the UK. Initial attempts at seeking help were described as having been unsatisfactory and it was common for feelings of ‘being let down and disbelieved’ to be expressed. Participants reacted to this situation by taking more responsibility for their illness and its treatment. All except one of the participants described actively searching for treatments including CAM that could help them to recover from CFS. Among a wide range of complementary therapies tried were acupuncture, homeopathy, dietary supplements, kinesiology, osteopathy, Reiki and visiting a spiritual healer. Yoga, meditation and relaxation were also practised by several participants. Some of the participants began searching in the hope of finding a cure for their condition. But on reflection, their exploration of other options appears to have been the first stage in their taking control of their treatment and of finding ways to cope that worked for them and that fitted their own understanding of their illness.
This fits with the latest NICE guidance on CFS, much of which focuses on lifestyle, and thus patients’ self-management of their condition. Furthermore, although complementary therapies and dietary supplements are not actually recommended (because there is ‘insufficient evidence of benefit’), the guidelines nonetheless suggest that ‘patients may wish to try these therapies for symptom control as part of a self-management strategy’. Appropriate use of relaxation, physical activity and exercise is advised, and clearly this could include some complementary approaches such as meditation, visualisation techniques and non-aerobic exercise-related therapies such as yoga or tai chi. CAM has also been suggested for managing the related symptoms of sleep disturbance, pain and mood disturbances. Indeed, within the NICE guidance, patient testimonies do mention use of acupuncture, homeopathy, yoga and tai chi for specific problems.
Fibromyalgia/chronic pain
Fibromyalgia has similar characteristics to CFS: it has a high prevalence (between 3 to 6% of the world population), a poorly understood cause, an association with frequent co-morbidities and a shortage of effective conventional treatment.
A recent online survey of people with fibromyalgia generated an impressive response. The survey, hosted by the National Fibromyalgia Association, was completed by 2,569 people over a period of three days. The majority of respondents were middle-aged Caucasian females from the USA who had been symptomatic for approximately four years. Participants were given a list of interventions and asked whether they had used these and if so how effective they had been. Rest, heat modalities, prescription pain medications, anti-depressants, prescription sleep medications, prayer, massage/reflexology, and pool therapy were rated as most effective (≥ 6.0 on a 1–10 scale). Chiropractic, relaxation/meditation, non-aerobic exercise (stretching, yoga, tai chi), acupuncture, pilates and energy healing were rated as slightly less effective, while nutritional supplements, hypnosis and biofeedback received low ratings (less than 4). In-depth interviews with fibromyalgia patients suggested that access to alternative care is restricted by cost considerations.
Another survey involved patients presenting with non-malignant chronic pain persisting for three or more months at 12 US academic primary care practices. Of the 463 who responded, 52% reported current use of CAM. The most common form of CAM use reported was vitamin and mineral supplementation; of those using CAM, 64% reported taking supplements. Herbs, massage, garlic preparations, and chiropractic were the next most frequently cited CAM modalities. The benefits of using CAM were mixed: 54% agreed or strongly agreed that non-traditional remedies helped their pain, while 46% disagreed or strongly disagreed.
Chronic headache
Chronic headache is another common pain-based condition for which CAM treatment is often sought. A total of 110 chronic tension-type headache patients attending a headache clinic in Italy participated in a physician-administered structured interview on CAM use. Recent use of CAM therapies was reported by 23% of the patients surveyed. The patients appeared to prefer CAM practitioner-administered physical treatments to self-treatments, the most frequently used being chiropractic
(21.9%), acupuncture (17.8%), and massage (17.8%). The majority sought CAM care after visiting a doctor, most often on the recommendation of a friend or relative. However, only just over 40% of the patients felt CAM to be beneficial.
Additional insight into decision-making processes comes from qualitative studies. In a study of migraine self-care conducted in the UK, participants generally expressed an interest in what complementary therapies had to offer. Not all the participants had consulted a therapist because of the cost implications. Participants who had consulted CAM therapists, whether or not they found the treatment effective, compared these consultations favourably with traditional medical consultations, and generally expressed satisfaction with the time and advice offered by CAM practitioners. Their responses suggest that a holistic approach (ie one where a range of therapeutic options and lifestyle changes can be considered) was particularly appreciated. Although in one case, this approach was offered by a GP, participants felt this was not usually the case. A study of women with migraine in the USA also showed that self-care interventions are often searched for and discussed. The participants were eager to hear about self-care treatments described by other participants. A third study, conducted in the UK, confirmed that participants engaged in a great deal of self-help, in managing their lives and in seeking out treatments — particularly within the field of complementary medicine. This study suggested that self-help was frequently a response to poor experience of conventional medical services.
Insomnia
Chronic sleep disorders are a widespread health problem often linked to chronic pain, anxiety and depression. A telephone survey about sleep problems involved 2001 randomly selected French-Canadians. In the 12 months preceding the interview, 15% of them had used natural products (herbal/dietary) at least once to alleviate insomnia symptoms. Prescribed medications had been used by 11% of respondents during the previous year. People had also tried reading, listening to music, and relaxation to promote sleep. Massage, acupuncture, and hypnosis were far less commonly used options.
Non-medical practitioners and professionals such as pharmacists, acupuncturists, and homeopaths were each consulted by less than 1% of the sample. It seems that where sleep problems are concerned, people are far more likely to see doctors – usually a family doctor. Of those participants who had consulted someone, 83% had seen a GP, 17% a medical specialist (other than a psychiatrist), 6% a psychologist, and 3% a psychiatrist. However, the findings suggested that before seeking professional help, these individuals try self-help remedies for a considerable period of time.
Depression
Depression, like insomnia, is commonly linked with other chronic health conditions. Unlike insomnia, it appears that many of those suffering depression do not consult a health professional, possibly because of the perceived stigma surrounding mental illness. Consequently, self-chosen approaches are frequently used. 27
The many and diverse potential strategies available to individuals with depression were revealed in one large Delphi consensus study of self-help. A literature search initially identified 2,214 possible self-help strategies finally organised into 282 strategies. International panels of depression ‘consumers’ and professionals were involved in assessing the usefulness of these strategies. This resulted in 48 strategies being endorsed by both patients and health professionals although patients endorsed more strategies than professionals (70 versus 46 in the first round). There was agreement in general about the types of strategies most likely to be helpful which were primarily lifestyle or psychosocial in nature. There were also some differences: aromatherapy, massage, listening to music and taking vitamin supplements were rated much more highly by consumers. However, few strategies were rated as very easy or easy to carry out by consumers while professionals generally rated self-help as easier in practice than users.
CAM-based self-help strategies for depression endorsed by at least 80% of consumers and professionals
* Learning relaxation methods:
–progressive muscle relaxation
–autogenic training
–breathing exercises
–self-hypnosis.
* Using a website or book based on cognitive behaviour therapy.
* Practicing mindfulness or meditation.
In another study, ratings of helpfulness were compared with the actions that people with anxiety and depression actually take. The findings clearly demonstrated that perceived helpfulness does not accurately predict use. For example, counselling was rated as likely to be helpful by 93% of participants, yet only 15% actually used counselling in the following six months. Similarly, learning relaxation and seeing a mental health professional were rated higher for likely helpfulness than for use. The interventions most often used were those that are simple, cheap and readily available. This included pain relievers, vitamins and consulting a pharmacist. Special diets, sleeping pills and antibiotics were also used. Other predictors of use included gender: women were more likely to use a range of interventions, particularly those involving lifestyle changes, while men’s choices were more limited.
Healthcare is presented as a spectrum with 100% self-care at one extreme and 100% professional care at the other and it is clear that CAM extends across this spectrum. The surveys discussed in this paper took place in varied contexts, with differing populations and data collection methods. Aspects such as patterns of use cannot be compared but the studies support a particular role for CAM in self-care of chronic conditions for which there is no conventional answer. These conditions are relatively common, poorly understood in terms of aetiology and diagnosis is often difficult. The studies also offer some insight into the processes and decision-making by patients with these types of problems.
In many cases, patients seek CAM options as a first step in taking control or responsibility for their condition. The stage at which patients seek alternative treatments does however vary. It appears that for patients with poorly recognised conditions such as chronic fatigue syndrome and fibromyalgia, lack of satisfaction with conventional healthcare over a period of time is an influence, so that CAM is a last resort. For other conditions such as insomnia, a range of self-care (including CAM) approaches are tried initially, prior to consulting a doctor. In depression where there is some reluctance to consult health professionals, self-care and CAM appear to be used as alternatives to conventional medicine.
Women have consistently been shown to be the main users of CAM. They are more likely to seek out a wider range of treatment options in general than men. They are also interested in strategies used by others with the same condition and initiate discussions on this. This correlates with findings that decision-making around CAM and self-care is often based on anecdote and personal recommendation rather than evidence of effects. However, perceived effectiveness of specific strategies may not accurately predict use. Again, there are a number of possible reasons for this including accessibility, time limitations and cost. One study suggested that when considering feasibility of self-care strategies including CAM approaches, health professionals and consumers seem to differ in their opinions.
It appears that CAM has a significant role within self-care. Conditions for which CAM is often used are prevalent and chronic, requiring ongoing contact which has significant implications for the NHS. CAM’s role in the treatment process may be as first line or last resort depending on the condition and the therapy. Finally, the importance of discussing feasibility of specific strategies (including CAM) cannot be underestimated if self-care is to become an integral part of a patient-centred health service.
Written by Karen Pilkington
Senior Research Fellow, School of Life Sciences, University of Westminster
Starting my career as a clinical pharmacist, I first worked at the ‘high-tech’ end of healthcare with paediatric patients undergoing cardiac and transplant surgery. Following this, I moved into an educational role supporting health professionals in their quest to apply relevant research in practice. Initially focused on drug therapy, many of the questions arising later focused on complementary therapies. In 2003 I moved from the NHS into academia to develop my interest in CAM and to begin to answer some of the questions that had arisen.
