Room for improvement: complementary therapy users and the Australian health system

Abstract

Context

People with chronic conditions who are often in contact with the health‐care system are well placed to reflect on how services meet their needs. Some research characterizes people who use complementary and alternative medicines (CAMs) as a distinct group who opt out of the mainstream health system. However, many CAM users are people with chronic or terminal health conditions who concurrently use mainstream health‐care services. The difference in perspectives between people with chronic conditions who do or do not use CAM has received little attention by researchers.

Objective

To explore the views of CAM users with chronic conditions and identify their perspectives on the health system.

Design and Setting

In‐depth interviews and a self‐administered questionnaire were used to collect data on care‐seeking, self‐management and CAM use among people with type 2 diabetes and/or cardiovascular disease living in Victoria, Australia.

Results

One in four CAM practitioner users was partly motivated to use CAM as a result of their dissatisfaction with the mainstream health system. In general, their dissatisfaction mirrored the concerns of the general population. This included the perceived lack of a humanistic or person‐centred approach, which was central to problems relating to individuals' clinical encounters as well as to health system design.

Discussion and Conclusion

Participants' concerns suggest room for improvement in the Australian health system to better reflect patients' needs. A systems approach is needed to reorient health‐care practitioners to modify the organization of care because of the incentives embedded in the structure of the health‐care system.

Introduction

Chronic conditions place the highest burden on the Australian health‐care system, with people with these conditions in frequent contact with various health‐care service providers. The health‐care system – including biomedical and allied services, from acute through to tertiary care – has been consistently criticized by consumers in industrialized countries since the 1960s. The advent of various consumer health movements and advocacy groups, including the women's health movement, mental health and disability advocates, and broad‐based consumer health advocacy organizations (e.g. Consumers Health Forum of Australia)1 has contributed to service improvements. Yet despite these improvements, over 80% of Australians support major health system reforms, with 56% believing that fundamental changes are needed.2 Dissatisfaction about health services is expressed particularly by people with complex or chronic health conditions,3 for a number of reasons: perceptions of limited effectiveness of conventional therapies, drug side‐effects, medical personnel discrediting patients' views and contact with the health system causing feelings of stress and trauma.4, 5, 6, 7

The need to redesign primary care to better meet the needs of people with chronic conditions and complex care needs is recognized internationally.8 Because they live with an ongoing condition, people with chronic illnesses take an active role in decision making concerning their health and treatment and may seek alternatives including complementary and alternative medicine (CAM) when dissatisfied with services.9, 10 Population‐level studies of CAM use in Australia and other industrialized countries suggest that people with higher education and income disproportionately use CAM services and that people with chronic illness tend to utilize CAM products and practitioners at a higher rate than the general population.4, 11, 12, 13, 14, 15, 16, 17, 18 Many people concurrently use conventional medical therapies, not because of dissatisfaction with mainstream medicine, but to cover a greater range of treatment options.6, 18, 19 However, some CAM users are sceptical of conventional medicine and find trusting in it difficult.16, 20 Concerns about mainstream health services expressed by CAM users with chronic conditions include lack of treatment effectiveness4, 5, 6, 20 and treatment side‐effects,4 poor communication with practitioners6, 7 and differences in beliefs about causes of ill health, diagnoses and appropriate treatments.4, 6, 16, 20

In Australia, people visiting integrative medicine clinics (combining CAM and biomedicine either within one clinic or both offered by one practitioner) have been shown to ‘shop around’, trying different practitioners until they find a service which meets their expectations.21 This is in part explained by personality traits and philosophical orientation commonly associated with CAM use, including openness to experience, and a ‘holistic’ view of health (belief in the importance of body, mind and spirit in health).18, 22, 23, 24, 25 However, research findings are mixed on the extent that negative attitude towards or experiences with conventional medicine drives CAM use.18, 26

The CAMELOT (Complementary and Alternative Medicine, Economics, Lifestyle and Other Therapeutic approaches for chronic conditions) study investigated how people with cardiovascular disease (CVD) or type 2 diabetes mellitus (DM) managed their chronic conditions and utilized CAM therapies. In this article, we report on where these participants saw room for improvement within the health‐care system, and we compare CAM users with other consumer critiques of the mainstream health system.

Critiques of the health system

Concerns about the health system, expressed by Australians, reflect four main themes: better health service access, more information, holistic care and better service coordination. Access to quality medical care, technologies and drugs is particularly problematic for people under financial stress or who live outside of major cities.2 While Australian Medicare and the Pharmaceutical Benefits Scheme provide universal access to health care, these systems offer limited financial support for allied health services and medications and no support for CAM products or services. Private health insurance policies which include CAM and allied services are costly and rebates are limited.

Health‐care consumers also link their dissatisfaction with lack of information.4 Wheatland found that people want transparent and unbiased information about costs, treatment options, side‐effects and risks. Women using mainstream maternity services,27 consumers of mental health services28 and CAM users who want information about treatment options, biomedical or CAM, all refer to lack of information as a shortcoming in the prevailing system.21, 29, 30

The desire for ‘holistic care’ encapsulates the wish that health services be thorough and responsive to an individual's needs. Consumers see this as health care that centres around their needs, in their best interest – as they perceive it – including acknowledgement of connection between physical, mental and environmental health.3, 31 People with chronic conditions also emphasize the value of doctors' support of self‐management and their better utilization of the expertise of nurses and allied health practitioners.3 Holistic care can also include providers considering all options for both conventional and CAM treatments.6 Over 80% of Australians support reforms such as the local management of health services and nurse‐led clinics to provide holistic care.2 A multidisciplinary primary care model, rather than a doctor–patient partnership model, also enables greater continuity of care.32 The expectation for holistic care would imply expectation for individuation of care, and the absence thereof may create dissatisfaction with care or seeking alternative providers.

The need for improved coordination and continuity of care for people with chronic conditions is a policy goal for Australia and other countries.33, 34, 35 Studies and reports indicate that consumers want better coordination of services and continuity of care, including improved communication and coordination between health professionals, within multidisciplinary teams, between organizations and across clinical and non‐clinical services.3, 28 Patients with multiple health conditions and their carers also want assistance to negotiate various services.36 Comparative research shows the need for improvement through developing care teams accountable across sites of care in Australia as well as other countries.8

Methods

Design

In‐depth interviews were conducted with 69 CAM users with DM or CVD to gather detailed descriptions of their experiences in living with chronic conditions, including their perspectives on the health‐care system relating to conventional and CAM care. The interviews informed the development of a survey for people with DM or CVD; CAM use was not a requisite for survey participation. In this article, we draw on the interviews to report on CAM users' perspectives of the health‐care system, to supplement the survey data on motivation and prevalence of CAM use. The study background, rationale, method protocols and participant demographics are detailed elsewhere.37, 38

Setting, eligibility and CAM definitions

Interviews were conducted with 69 people diagnosed with DM and/or CVD (including high blood pressure), who had used or were currently using any CAM products or practitioners for any reason. In this article, we draw on the views of people who consulted with CAM practitioners or engaged in CAM practices led by a practitioner (e.g. Tai chi); we therefore exclude interview participants who used self‐prescribed CAM products (e.g. nutritional supplements) without the supervision of a practitioner. Interview participants lived in metropolitan and regional Victoria, south‐eastern state of Australia. CAM practitioners were broadly defined as people, other than medical or allied to medicine practitioners, who provided service or treatment to improve health and well‐being.

All survey respondents had DM and/or CVD (including high blood pressure or high cholesterol) and lived in Victoria, Australia. In the survey, our description of CAM therapies included naturopathy, homoeopathy, herbal medicine, nutritional medicine (including vitamin or mineral supplements), aromatherapy, reflexology, massage therapies, Ayurveda, acupuncture, Chinese medicine, spiritual healing, meditation, Tai chi, yoga and ‘others'. CAM use included self‐prescribed use of ‘CAM’ products (e.g. nutritional supplements). We differentiate in our results between CAM practitioner and product only users.

Data collection and analysis

Ethics approval was granted by the human research ethics committee of Monash University. Interview and survey participants were recruited using a variety of methods to maximize sample diversity, including through CAM or integrative medicine practitioners, public noticeboards and email flyers, advertisements in seniors' newspapers, service and health clubs and diabetes or heart support groups – the latter two with support from Diabetes Australia‐Victoria and Heart Support Australia. With support from Diabetes Australia, 10 000 surveys were posted to a random sample of people with DM with a 22.8% response rate. One interview with each of 69 participants was conducted between April 2009 and January 2010. Valid surveys were received from 2915 people between April and July 2010. We used IBM SPSS Statistics (v.19; IBM Corp., Armonk, NY, USA) for data cleaning and statistical analyses of survey data. The qualitative data analysis software package NVivo9 (QSR International Pty Ltd., Vic., Australia) was used to facilitate thematic analyses of the interviews. Below, we use pseudonyms to identify participants, along with their age, diagnosis and whether they resided in a city or regional location.

Results

CAM use

Of the interview participants, 59 (86%) used oral CAM products, 44 (64%) consulted with a CAM practitioner(s), and 39 (60%) had taken part in CAM practices such as yoga, Tai chi or meditation. CAM therapies, of any sort, had been used (ever) by almost half of survey respondents (47.9%, n = 1396) and by 42.8% (n = 1247) in the last 12 months – although not necessarily for the treatment of DM or CVD. In the last 12 months, 23.0% (n = 671) of respondents had visited at least one CAM practitioner. The vast majority used a CAM product or practitioner in addition to pharmaceutical medications (95.2%, n = 1187). People's motivations to use CAMs varied and differed between those who did and did not consult with CAM practitioners (Table 1). For example, 51.9% of people who used CAM products, but not CAM practitioners, were motivated to use CAMs after suggestion by their doctor, pharmacist or other health professional, compared with 35.3% of CAM practitioner users. Over a quarter (26.8%, n = 173) of CAM practitioner users indicated that dissatisfaction with the service or treatment they received from the medical system had motivated them to first use CAM products or practitioners, whereas just 8.7% (n = 46) of CAM product users were motivated for this reason. Interview participant Heather (54, DM and CVD, city) provided insight into her motivation to first use CAM: ‘simply because the medical profession gave me no ideas, no options, no suggestions what I could do’. At the time of her interview, Heather no longer visited CAM practitioners to the extent that she had years ago, but she continued to use a variety of CAM products and had an occasional massage.

Table 1.

Survey respondents' motivations to first use complementary therapy products or practitioners

	CAM type (used in last 12 months), n (%)
	Product only N = 527	Practitioners † N = 645	Total N = 1274
Improve general health and well‐being**	299 (56.7)	419 (65.0)	719 (57.7)
Doctor, pharmacist or other health professional suggested it***	273 (51.8)	228 (35.3)	501 (40.2)
I believed CAM would be effective for improving my condition***	132 (25.0)	331 (51.3)	463 (37.1)
I felt it could not hurt or harm me	164 (31.1)	227 (35.2)	391 (31.4)
To take more control of my health***	123 (23.3)	244 (37.8)	368 (29.5)
I prefer natural things***	106 (20.1)	220 (34.1)	326 (26.1)
My family or friends suggested it**	105 (19.9)	173 (26 8)	279 (22.4)
I believed CAMs to be less harmful than pharmaceutical or medical treatment***	61 (11.6)	148 (22.9)	209 (16.8)
Information from TV, internet or books*	72 (13.7)	64 (9.9)	137 (11.0)
I was unhappy with service received from the medical system*** , ‡	15 (2.8)	104 (16.1)	119 (9.5)
My pharmaceutical or medical treatments were not working*** , ‡	18 (3.4)	83 (12.9)	101 (8.1)
My pharmaceutical or medical treatments were causing unwanted side‐effects*** , ‡	26 (4.9)	74 (11.5)	100 (8.0)
Other motivation*	12 (2.3)	30 (4.7)	42 (3.4)

Missing responses excluded from analysis *P < 0.05, **P < 0.01, ***P < 0.001 based on chi‐square analysis comparing CAM product and practitioner user responses.

^†Most CAM practitioner users also used CAM products.

^‡8.7% (n = 46) of CAM product and 26.8% (n = 173) of CAM practitioner users (or 17.6%, n = 219 of combined CAM product and practitioners users) picked one or more of these options which relate to issues with the health‐care system.

Interview participants' CAM use varied, both between participants and for individuals at different times in their lives, in terms of level of use, modalities used, use of practitioner or product only and for how long they were used. Not everyone who turned to CAMs for their chronic condition management continued to use CAMs at a high level. While some interviewees, like Heather, turned to CAM practitioners out of desperation, most were largely satisfied with their concurrent medical treatment. Nonetheless, many spoke of individual or system‐level issues relating to their encounters with the health‐care system.

Room for improvement

Figure 1 outlines the issues or themes arising from the interviews with people who engaged with CAM practitioners, relating to areas which they perceived needed improvement within the Australian medical system. Many concerns were individual‐ or interpersonal‐level, but others related to system‐level issues which frequently impacted on personal‐level care. Participants' criticisms were mostly related to primary care, but also to hospital‐based and specialist care. The themes are not mutually exclusive, but interrelate, so we present the findings, below, in a narrative style to emphasize their interconnectedness.

Figure 1.

Complementary therapy users' perspectives on needed health system improvements.

Individual encounters

Most interview participants expressed concern with the lack of personal engagement by their doctors; this could colour their perceptions of their doctors' skills, knowledge and interest in them. In their role as patients, most participants wanted acknowledgement from their doctors that they were seen and heard as individuals. Herbert (73, CVD, city) described his doctor: ‘He sits there talking to his computer and typing, and that to me is not doctoring’. Others were similarly affronted when their doctor appeared more interested in their computer than in them. Victoria (81, CVD and DM, city) voiced her concern, but her criticism was not well received:

I actually had a go at one doctor … I'm sitting there, and his eyes are on the computer. …I felt, ‘if you saw me walking down the street you wouldn't know me’. And he said to me ‘do you realise what we have to do for this money?’ He didn't like what I said! But I really felt, ‘blow you, what a waste of time, I could be somewhere else right now doing something else! I'm here for the assessment and you're not interested in me, you're interested in what's on the computer. You're not listening to me’.

Interview participants often compared the time and interpersonal skills of CAM practitioners and doctors. CAM practitioners were described as giving time, listening and being good communicators while doctors were rushed or did not give time and were poor listeners and poor communicators. Judith's (62, DM, city) perception that doctors were not ‘terribly open’ and that ‘they don't treat the individual… as much as they think they do’ was echoed by other participants. Judith believed doctors needed to move beyond ‘what they were taught’ to focus on the individual. Some participants also felt that their doctors lacked knowledge and competence. Sara (67, DM and CVD, city) described ‘sacking’ her endocrinologist because she felt he was ‘absolutely useless’, that she was not getting ‘thoroughly checked out’. She felt that the visits were ‘not worth the hundred dollars each time to go and see him’. Similarly, Lorna (85, CVD, city) was concerned that ‘there are far too many [doctors] that have got a great lot of theory but they're not practical and they don't know how to [provide care] – they've read a book’. This links to Nerida's (64, DM, city) observation that encounters with doctors were usually mediocre, for to them, the consultation was ‘just a job’. Her perception of services received, however, was far improved when she was ‘lucky’ enough to ‘get one [doctor] that isn't just there doing their job’.

Several people spoke of their doctor's lack of proactivity regarding an active, preventive approach to health care. Lorna described the medical system as having ‘too much concentration on drugs and not enough on prevention’. On learning that she had diabetes, Raelene (65, DM, city) was surprised to find that her doctor had been monitoring her blood glucose levels and had noted that they were ‘gradually going up’, yet he had never mentioned this to her. Raelene had not been advised to take a preventive approach nor had she felt supported in her request for assistance to lose weight; her diagnosis of diabetes took her by ‘surprise’.

Although diet and lifestyle modification are acknowledged as important in the prevention and treatment of DM and CVD, many participants believed their doctors lacked interest in these areas. When Terry (72, CVD, city) was undergoing rehabilitation after an acute cardiac event, he forewent surgery in favour of radical diet and lifestyle changes – changes which he was able to sustain and which seemed to have benefited him greatly. During his hospital‐based cardiac rehabilitation, Terry found only ‘one of ten’ doctors was interested in hearing about and encouraging his diet and lifestyle change; the rest ‘were just rude, they didn't even look at me’.

As already raised by Sara, lack of interest and care was perceived when a doctor did not conduct a thorough assessment. Herbert found this an issue when he visited his GP with back pain: ‘She didn't even take my shirt up, she didn't touch me’. He was referred to a physiotherapist who immediately saw that Herbert had shingles and referred him back to his GP. While only one participant called a doctor incompetent, many expressed serious concerns about lack of thoroughness, delays in diagnosis and delivery of information, and lack of care coordination between different doctors. Many participants spoke of displays of rudeness or arrogance by their doctor. Max (46, DM, regional) described a visit to a specialist: ‘[He] just said “pressure garments, shouldn't have got them, they're not good. You are too fat, lose weight”. It was like “see you later” … He was just very rude and arrogant’.

Interviewees regularly spoke of the impersonality of the medical encounter. ‘I was just a number, wheel you in, wheel you out and bang, out the door; that's how it felt… No wonder he's [the doctor's] anxious to get [you] through because he's got $10 000 coming through every half hour’ (Terry – referring to angiogram and angioplasty procedure). Herbert believed that ‘problems with doctoring’ were ‘inevitable’ and foretold of the medical system becoming increasingly impersonal:

I mean, there's just so much paperwork and everything else they have to do… I'm just part of the factory now. It's no longer the local doctor that you knew personally, individually, for years. …It won't be long before we go to a cubicle, stick your finger in and you'll listen to some mechanical voice.

Most participants recognized that doctors had constraints on their time; however, not all were willing to accept time constraints as valid reasons for the lack of personal care. ‘I know doctors are busy…and I know they like to tell us that they're over‐worked. I don't believe it. I'm really not believing that they're over‐worked. They get bloody well paid for what they do’ (Nerida).

System‐level issues

The main system‐level issues raised by CAM practitioner‐using participants were overemphasis on pharmaceutical treatment; inefficient information transfer – between health‐care providers and patients or between medical professionals involved in care; lack of continuity and consistency of care; getting the ‘runaround’; and lack of follow‐up.

Thirty‐four per cent of CAM practitioner‐using survey respondents were motivated to use CAM because of their preference for ‘natural things’; this was reflected also in the interviews. Judith emphasized the idea of harmful pharmaceuticals versus helpful ‘natural’ CAM products: ‘It [CAM products] works, and at least I'm not damaging my kidneys in the process, which I always feel when I take things [prescription pharmaceuticals] from a pharmacy’. Peter (55, CVD, regional) similarly articulated concern about the overemphasis of drug prescribing within the medical system. This emphasis may reflect the doctors' personal preference, but it also points towards the influence of system‐level training and common professional group praxis:

Each time I go and see the GP, she's there saying, ‘Well, I think you should be on cholesterol drugs’. And I say, ‘well what's it going to do to me? You know I've got low cholesterol’. [And she replies] ‘Yeah, but everyone's on them’ (Peter).

Complaints of inefficient systems of information transfer between health‐care providers and patient, or between medical professionals involved in one's care, related to lack of continuity of care. Heather described her irritation at this within the public health system:

You never see the same person [doctor] twice so you can't get on a stream of theory or information or follow a certain path or track because you think you're doing that, and then next time you come back and you're seeing Fred Bloggs, and Fred Bloggs has got a completely different opinion to the previous five [doctors].

Heather, and other participants described the necessity of being proactive in managing multiple service providers and practitioners, to ensure that diagnostic and treatment information was shared.

In rural areas with a high rotation and turnover of nurses and doctors, and infrequent rotation of specialists, lack of provider consistency was near inevitable and an especial concern. Many migrant doctors are posted on immigration to underserviced regional and rural areas – all are required to pass stringent English language proficiency exams before practising. While grateful to have local doctors, several regional participants spoke of their difficulty communicating with migrant doctors when their accent was unfamiliar, and likewise the doctors often had difficulty understanding regional Australian accents: ‘They couldn't talk English … I'd rather go to a doctor that I can talk to. It's like ringing up and getting a call centre in India or something like that, I get a bit angry’ (Bruce, 59, DM, regional). Participants in these situations reported that with time, communication between them and their doctors improved as both became familiar with the other's accent. However, most had been through this cycle numerous times, as one migrant doctor after another came and went – with most doctors choosing not to stay after completing their required time in rural areas.

Another frustration for participants was ‘getting the runaround’, when the pace of diagnostic or treatment progress was protracted, complicated by multiple referrals and often unhelpful or inconsistent information regarding who to consult with, for what sort and treatment and how to access services. Such delays were exacerbated by lack of familiarity with referral processes and with the organization of services in the health system. Over several months, Jack (61, CVD, regional) became a frequent visitor to his medical service in an attempt to get treatment for an undiagnosed illness which had him frequently vomiting and losing body mass. During this time, he was referred out and back again several times:

I was just being ignored. I really was. I never struck that before, going into a medical centre and nothing being done. It was just ‘sign this’, ‘come back in 2 days time’, ‘sign this again’, nothing done. I could have died.

Sometimes getting the runaround was a result of interpersonal issues between doctors and patients. Nerida found a new doctor after months of feeling that her previous one was not taking her problems seriously and that he considered her to be a ‘dippy (slang: foolish or crazy) woman’. While not able to offer a great deal of relief for her problem, the new doctor took Nerida's complaints seriously and provided her with a diagnosis and peace of mind.

A concern, particularly for people who had experienced cardiac events, was lack of follow‐up, which led to feelings of being forgotten. Peter (55, CVD, regional) described the hardest thing in recovery from a cardiac event was ‘once the hospital leave you… and you go out on your own, there's no sort of follow up’. This and other views implied a sense of abandonment by the health system when the individual was still in a time of need.

Discussion

CAM use does not equate to rejection of mainstream health services. Our survey of people with DM or CVD indicated that in a 12‐month period, 98.7% (n = 2878) visited medical doctors or specialists. But in addition, 42.8% used CAM, of whom 53.8% consulted CAM practitioners. Dissatisfaction with mainstream health services or treatments, including concern about unwanted side‐effects or harm of pharmaceutical or medical treatments, was one of a number of motivators for 26.8% of CAM practitioner users to first try CAM; the other three quarters did not explicitly make this point. But this indicates that for some consumers at least, their experiences of conventional medical treatment fall short of expectation, and so there is room for improvement.

CAM users in Australia and other countries are described as discerning consumers who see themselves as health experts.21, 29, 30 CAM use varied among interviewees, both between participants and for individuals at different times in their lives, in terms of level, modalities and length of time used, and not everyone who turned to CAMs for their chronic condition management continued to use CAMs to a high level. It might be anticipated that the pluralistic and syncretic use of health‐care services by CAM practitioner users might have led some to critique mainstream health‐care services more vigorously than people who had not experienced alternative health‐care systems. However, the concerns expressed by our participants, in relation to the health system, tended to mirror concerns expressed by consumers generally.

The strongest theme that arose regarding health system improvement was the need for a more humanistic and individualistic approach, where patients can have a greater personal relationship with their care provider. As depicted at Figure 1, most participants' concerns related to a lack of humanism within medical encounters and the need for doctors to improve their interpersonal skills to provide better communication; a greater show of interest in the patient as a person who has valid knowledge about their problems and needs; and in association with this, less condescension or arrogance. Greater provider knowledge, emphasis on chronic disease prevention rather than symptom management and greater consistency of information and treatment by different providers were other areas identified as needing improvement.

Other studies internationally have suggested that patient satisfaction is related less to therapeutic outcome than to therapeutic alliance,4 that people want better communication with their doctors and that dissatisfaction arises when the doctor does not appear to listen carefully or understand the patient's perspective.16 Patients feel misunderstood and dismissed as complaining or told there is ‘nothing wrong’ despite symptoms. They feel that consultations are rushed.

Some of the personal inadequacies of providers, perceived by our participants, might be a result of or exacerbated by the structure of the system in which they operate. The systems issues that consumers encounter reflect the organization of service delivery and financing incentives in the health‐care system. A primary care system based largely on fee‐for‐service, private GPs inevitably leads to short consultations, lack of information transfer, limited team work or multidisciplinary approaches. This is reinforced by split financing responsibilities between the federal government responsible for GPs and states responsible for hospitals and community health services. Additionally, insurance rebates are available for CAM practitioner services only through private health funds, contributing to further fragmentation in the health system, particularly as experienced by CAM users who have chronic conditions.

While payment reforms in recent years have promoted improved care planning and care coordination for people with chronic conditions, only referrals to selected allied health practitioners are covered through the national health insurance scheme (Medicare). Although interest among GPs in CAM practitioners is relatively prevalent39, there is little in the medical educational experience that exposes doctors to consumers' practice of medical pluralism, and attitudinal barriers remain as a hindrance for developing better coordination between GPs and CAM practitioners.

However, even without considerable health system restructure, participants' perceptions suggest that increasing doctors' personal interest and engagement with patients would go a long way to improve perceptions of the system. Nonetheless, system‐level organizational, workforce and medical cultural changes are likely required to support doctors in making and sustaining personal change. For example, doctors might be more able to listen to patients and conduct thorough assessments if they are not confined to short consultation times.

In managing or negating the shortfalls of the medical system, some participants increasingly took charge of the decision making in managing their chronic condition. Their consultations were with various practitioners who were part of their health‐care ‘team’, which might include medical, allied and CAM practitioners. Other participants had experiences within the health‐care system which led them to lose, for long or short periods, confidence and faith in the medical professionals, when CAM care was an alternative to find help or answers. Yet in general, CAM users neither shunned conventional medicine nor assumed that all modes of CAM were worthwhile.6

Our research supports other research in Australia and elsewhere that CAM practitioners tend to offer more time, show more empathy and counselling skills and offer greater continuity of personal care.4, 6, 7, 30 Many consumers want to work with health professionals as equal partners.31 By accessing both systems, CAM users are seeking care which they feel better meets their needs or is more effective.36 The World Health Organization's strategy for ‘people‐centred health care’40, 41 and its framework for Innovative Care for Chronic Conditions42 acknowledges the need for a paradigm shift so that health systems can more effectively meet the needs of people with chronic conditions and move from the present focus on acute care. The World Health Organization's vision would encompass a shift to greater: integration, alignment and communication across service providers; empowerment, participation, equitable access, support and ‘holistic’ delivery of health care for patients and their families (i.e. encapsulated in the notion of people‐centred health care); and emphasis on prevention of chronic conditions. While Australian governments past and present have implemented policies and service models aligned with high level policy frameworks such as these,34, 36, 43, 44 our research suggests that such reforms have not yet been effective in meeting the expectations of people with chronic health conditions.

Conclusion

A key criticism made by CAM users with chronic conditions is that providers in mainstream health services, particularly in primary care, lack a humanistic or person‐centred approach. Such an approach requires the cultivation of communication skills and an attitudinal shift by mainstream health‐care providers. Our findings support the World Health Organization's recommendations for health system change, where meeting the ongoing and multiple needs of people with chronic conditions requires the workforce to become skilled in providing better coordinated, patient‐centred services.40, 42, 45

Our findings also suggest that CAM users' concerns with the mainstream health system are similar to general critiques of the health system by people living with chronic conditions, thus suggesting that the system is not meeting the needs of users, rather than CAM users being a distinct population group. To meet the ongoing and multiple needs of people with chronic conditions, reform is required at multiple levels of the health‐care system. The People‐Centred Health Care framework40 points to the importance of policy action at both individual and system levels, consistent with the findings of this paper. In addition to ensuring a successful clinical encounter, through knowledgeable patients and responsive practitioners, there is a need to ensure organizational environments are supportive of a humanistic and holistic40, 41 approach and that policy incentives (such as financing and regulation) for health‐care organizations and individual health practitioners are conducive to a partnership between users and carers.

Funding

Funded by Australian National Health and Medical Research Council (NHMRC) grant number 491171.

Conflict of interest

The authors declare no competing interests.