Resisting medicines: a synthesis of qualitative studies of medicine taking

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Abstract

The study aimed to synthesise qualitative studies of lay experiences of medicine taking. Most studies focused on the experience of those not taking their medicine as prescribed, with few considering those who reject their medicines or accept them uncritically. Most were concerned with medicines for chronic illnesses. The synthesis revealed widespread caution about taking medicines and highlighted the lay practice of testing medicines, mainly for adverse effects. Some concerns about medicines cannot be resolved by lay evaluation, however, including worries about dependence, tolerance and addiction, the potential harm from taking medicines on a long-term basis and the possibility of medicines masking other symptoms. Additionally, in some cases medicines had a significant impact on identity, presenting problems of disclosure and stigma. People were found to accept their medicines either passively or actively, or to reject them. Some were coerced into taking medicines. Active accepters might modify their regimens by taking medicines symptomatically or strategically, or by adjusting doses to minimise unwanted consequences, or to make the regimen more acceptable. Many modifications appeared to reflect a desire to minimise the intake of medicines and this was echoed in some peoples’ use of non-pharmacological treatments to either supplant or supplement their medicines. Few discussed regimen changes with their doctors. We conclude that the main reason why people do not take their medicines as prescribed is not because of failings in patients, doctors or systems, but because of concerns about the medicines themselves. On the whole, the findings point to considerable reluctance to take medicine and a preference to take as little as possible. We argue that peoples’ resistance to medicine taking needs to be recognised and that the focus should be on developing ways of making medicines safe, as well as identifying and evaluating the treatments that people often choose in preference to medicines.

Introduction

In 2003, three high-profile reports on medicine taking were published; one from the World Health Organisation (WHO, 2003), second from the government funded Medicines Partnership (Carter, Taylor, Levenson, & for The Medicines Partnership, 2003) and the last from the Kings Fund (Harrison, 2003). Meanwhile, an initiative called ‘Ask about Medicines Week’ was launched to ‘help promote partnership in medicine taking between medicine users, carers and health professionals’ (www.askaboutmedicines.org). During ‘Ask About Medicines Week’ the British Medical Journal dedicated an issue to the theme of ‘concordance’ (Issue 7419), as did the official journal of the Royal Pharmaceutical Society (Issue 7270 of The Pharmaceutical Journal). What prompted this attention?

The aim of the WHO report was to improve worldwide rates of ‘adherence’ to long-term treatments for chronic conditions, which at present the authors of the report estimate to be 50%. They claim: ‘Poor adherence is the primary reason for suboptimal clinical benefit. It causes medical and psychosocial complications of disease, reduces patients’ quality of life and wastes health care resources’ (p. 25). Likewise, the Medicines Partnership cites ‘a rising drugs bill and the key role of medicines in promoting health’ (Carter et al., 2003, p. 2) as the key reasons for improving compliance. Both reports review the literature to identify factors influencing medicine taking. The Medicines Partnership cites demographic factors, issues to do with the medicine itself, ‘beliefs’ about medicines, concerns about the value or appropriateness of medicines, psychosocial issues, confusion and physical difficulties as influential factors. The WHO report suggests that the following affect medicine taking: social and economic factors, health care team and system-related factors, condition-related factors, therapy-related factors and finally, patient-related factors (among which are included anxieties about the treatment, stress, perceptions that the medicine is not needed or effective and non-acceptance of illness).

The independent Kings Fund report (Harrison, 2003) was written in response to a ‘growing recognition’ that the interests of those who provide health care do not necessarily coincide with the needs of those who use it. Harrison argues that the current emphasis on pharmaceutical products distracts attention from other approaches to health care such as behavioural therapies, illness prevention, public health interventions and ‘alternative therapies’. Furthermore, because research priorities are not determined by consumers, he argues that the needs of major groups have been ignored and important therapeutic areas neglected. ‘These circumstances have produced health care systems that are highly drug dependent and that in general cannot see themselves being any different’ (Harrison, 2003, p. 18).

Vermeire, Hearnshaw, Van Royen, and Denekens (2001) observe that during three decades of quantitative research into non-compliance, more than 200 variables have been studied, but none can be considered as consistently predictive of compliance. The authors suggest that despite continuing research, there have been few insights since the 1980s. Most of the research has been on the extent and determinants of non-compliance but Vermeire et al. argue that this research has been fragmented, of variable methodological quality and lacking an integrating model or theory. They suggest that the lack of success in this field is due to neglect of patients’ perspectives and an absence of qualitative research. Blaxter and Britten's (1996) review of lay beliefs about medicine taking provided an insightful explanation for the behaviour that many professionals find bewildering; they concluded that lay people do not view medicine as something to be taken ‘as prescribed’ but rather as a resource for use as they see fit. The authors suggest that more qualitative research is needed to shed light on the topic.

Rather than conducting further qualitative studies of medicine taking, the aim of our study was to try and progress the field by synthesising the available qualitative research into lay experiences of medicine taking, using the technique of meta-ethnography.

A brief note on the terminology of medicine taking is first necessary. This has undergone three key changes during the last few decades, that of compliance, adherence and now concordance. Compliance is traditionally assumed to refer to doctors’ desire for patients to comply with their instructions about taking medicine. Adherence was subsequently offered as a more neutral expression, but the tone remained prescriptive, so a new model, that of concordance was proposed (Blenkinsopp, Bond, & Britten, 1997). Concordance refers to the anticipated outcome of the consultation between doctors and patients about medicine taking, if both parties can be encouraged to work together as partners. In practice the three terms are often used interchangeably, despite the subtle differences in meaning and perspective.

Section snippets

Methods

We used this definition when searching: ‘Papers whose primary focus is patients’ views of medicines prescribed and taken for the treatment of a long- or short-term condition (excluding medicines only taken for preventive purposes)’. The study had to use both qualitative methods of data collection and analysis and be published in English. We chose the 10-year period from 1 January 1992 to 31 December 2001 (the study began in Spring 2002) believing that most of the relevant studies would be found

Study perspectives

Key features of the studies in this synthesis are summarised in Table 5. Most are concerned with medicines taken on a long-term basis for chronic illnesses. The earlier sociological and anthropological studies emphasised the rationality of lay behaviour, challenging the ideology of compliance that dominated preceding decades. A small number of sociological studies investigated medicine taking in its own right but the absence of compliance as a starting point was rare in the studies. A few

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