Time, self and the medication day: a closer look at the everyday work of ‘adherence’
Address for correspondence: Liza McCoy, Department of Sociology, University of Calgary, 2500 University Drive N.W., Calgary, Alberta, T2N 1N4, Canada
This article examines the everyday work of participating in pharmaceutical treatment for HIV infection in the context of urgent calls for adherence. Drawing on interviews and focus-group conversations with people taking antiretroviral drugs, the analysis explicates the work that goes into striving for adherence. What comes into view is a form of time work that brings about a temporary alignment between the inner experience of time, standard clock time, and the requirements of the medication schedule. Time work is largely cognitive; the pills, however, must actually be swallowed to complete the dose, occasioning, for some people, additional work to suppress or refashion emotional responses of anger and resistance. Both the time work and the emotional work of taking antiretroviral drugs draw people into forms of self work, including self-examination and self-adjustment, as they develop strategies for ‘doing adherence’.
I have this container full of different drugs, right? And then drugs in the fridge and other drugs in bottles in a cupboard. And people say, how do you keep track? Like how do you know what you have to take and how many and when? You learn! It is part of your life, it is an everyday thing.
People who undertake to participate in a regimen of self-administered pharmaceutical treatment are enlisted into a distinctive form of everyday work. At the intersection of unfolding, individual experience and cyclical, standard clock time, they work to create the conditions for pill taking and to accomplish their doses in a way they can recognise as a successful realisation of the medication instructions. Although much research and clinical attention swirls around the notion of medication ‘adherence’– attempting to determine to what extent people take their medication as prescribed, why they do not, and how to help them become more ‘adherent’– little attention has been paid to exploring what people are doing when they are trying to carry out their regimens. In this article I take a close look at the work of taking pills, dose by dose, day after day, as described by individual people who are taking antiretroviral therapy for the treatment of HIV. This is private work but socially organised, evoked in common ways through standardised pharmaceutical treatments and widely circulating discourses of adherence.
Pharmaceutical products occupy an increasingly prominent place within the developing trends of technoscientific biomedicalisation (Clarke et al. 2003). Recent decades have seen a steady expansion in standardised medication products for a widening range of illnesses and discomforts (Conrad 2007). This results in a greater role for medication in people's lives, whether this be women's adept use of over-the-counter remedies to keep functioning in the context of busy, time-stressed lives (Vuckovic 1999) or the way people living with chronic conditions, such as epilepsy (Conrad 1985), asthma (Prout, Hayes and Gelder 1999) or schizophrenia (Rogers et al. 1998) skillfully use prescription drugs to manage their illnesses within the multiple projects of their daily lives. The growing sophistication of pharmaceutical products transfers more of the biomedical treatment work to the patient, creating a modern ‘sick role’ (Parsons 1951) of active ‘self-care’ which takes shape in a context of increased health consumer activism (Lupton 1997), greatly expanded Internet access to health information and networks of fellow patients and patient advocates outside the control of medical authority (Akrich and Meadel 2002, Emke 1993), neoliberal discourses of individual responsibility (Crawford 1986), and ‘psy’ discourses of self-understanding and self-improvement (Rose 1990).
Highly active antiretroviral therapy (HAART) was approved for general use in the mid-1990s and has largely transformed HIV infection into a manageable chronic illness. In so doing, it has restructured the experience and work of living with HIV. To date, most research on people's participation in HAART regimens orients, in one way or another, to the problem of ‘nonadherence’. These are high-stakes drugs. The importance of correct dosing is an urgent topic, not just from a clinical perspective concerned with the health of individual patients, but from a public health perspective concerned about the potential transmission of drug-resistant strains of the virus created through non-adherent medication practice. Research with people on HAART has sought to determine specific factors that causally affect measurable degrees of adherence, such as health beliefs and disease severity (Catt 1995, Gao et al. 2000), attitudes to treatment and physicians (Attice et al. 2001) or social and personal barriers (Ferguson et al. 2002, Johnston Roberts and Mann 2000). Even studies that explore the lived experience of following a HAART regimen (e.g. Stone et al. 1998, Wilson, Hutchinson and Holzemer 2002) examine participants’ comments in ways that highlight the perspectives, social circumstances or interpretive practices that lead to persistent nonadherence. Clinically-oriented studies go one step further, implementing and assessing intervention projects to help delinquent HAART participants learn how to do a better job of taking their medication (McPherson-Baker et al. 2000, Sorenson et al. 1998). These studies focus on groups considered to be at risk for nonadherence, yet also available for intervention and scrutiny, such as HIV-positive clients of a methadone clinic.
There is, however, an absence at the core of all of this varied research. None offers any systematic examination of the work that goes into pill taking. This work, when alluded to, is glossed as ‘remembering to take pills’, ‘following the medication schedule’, ‘adherence’ or ‘compliance’. Because this is the preferred orientation to medication, the activity is conflated with the outcome: the pills are taken, a high degree of compliance is achieved, the schedule is followed. Nothing needs to be explained or fixed. Medical professionals and intervention researchers offering ‘medication adherence counselling’ (McPherson-Baker et al. 2000: 401) are clearly working with some notion of what goes into successful pill taking, but this remains background knowledge and is not examined explicitly in the analysis.
From a critical perspective, the concept of compliance or adherence comes into view as a historically constructed category steeped in relevancies of medical power and social control (Lerner 1997, Lerner, Gulick and Dubler 1998, Trostle 1988). The assumption that nonadherent medication use reflects ignorance or incompetence has been challenged by researchers who argue that what looks like irrational noncompliance from a location in medical relevancies can be the result of a different kind of rational decision making on the part of patients (Donovan and Blake 1992). Conrad (1985) proposed the more inclusive and nonjudgmental term ‘medication practice’, which directs attention to the varied ways people use prescribed medications as a resource in daily lives oriented to multiple and sometimes competing projects such as maintaining a feeling or appearance of normality, staying out of hospital, managing relationships with other people, or ensuring economic survival (e.g. Hunt et al. 1989, Rogers et al. 1998). Viewed from this perspective, what is analytically interesting is discovering the sense and purpose underlying those medication practices that appear medically deviant. As with the non-adherence research described above, the medication practice of people who use their medication in medically-approved ways has not drawn much attention from researchers working with a critical or constructionist approach.
My interest starts with the lived actualities of people taking HAART and asks, what is the work they are doing? I am not primarily concerned with matters of meaning and identity that arise in relation to medication (e.g. Adams, Pill and Jones 1997, Foote-Ardah 2003, Karp 1993, Lumme-Sandt, Hervonen and Marja 2000). Rather, my interest is more ethnomethodologically inflected: I ask, how do people on HAART bring about the daily, situated accomplishment of a self-administered medication regimen? In other words, how do they do adherence? This focus on what I call the work of adherence – managing daily dosing as the realisation of a medication schedule – aligns my interest with other ethnographic explorations of the work and skill that go into seemingly routine activities, such as feeding a family (DeVault 1990) or organising children's relationships to their school (Griffith and Smith 2004). It also contributes to the exploration of forms of health work, understood as whatever physical, emotional, mental and interactive work people do that, from their perspective, in some way contributes to maintaining or restoring their health (Mykhalovskiy and McCoy 2002). In the case of HAART, the given task is not just to take the prescribed pills, but to take them at the right times, in order to achieve successful repetition of scheduled dosing day after day. Thus, the work of adherence necessarily involves a kind of time work: aligning individual lived experience with standardised clock time. This recognition inspires an interesting intersection with studies in the sociology of time and injects a phenomenological dimension to the study of adherence.
Human social activity is always in some way co-ordinated temporally: when activities are done, how often they are done, how long they last, whether determined by common or imposed routines or the negotiations of spontaneity (Zerubavel 1981). Conceptions of time and strategies for reckoning time and duration are therefore integral to the modes of knowledge that operate in different societies and epochs (Gurvitch 1964, Thrift 1988). In contemporary Western society, everyday life is pervasively organised through the steady beat of time measured in abstract, standardized, stable units, in ways that effect far-reaching strands of co-ordination, as people in dispersed sites align their activities with a global system of clock time (Young 1988). But the salience of clock time is situational. Different conceptions and subjective experiences of time prevail even within modern, clock-based society (Crow and Heath 2002). Particular occupations (Young 1988) and institutions, such as hospitals (Zerubavel 1979) and biomedical services (Frankenberg 1988) generate their own characteristic time practices and conflicts, such as the contradictions that arise between ‘process time’ and clock time in caring work (Davies 1994).
Time, in the sense of perceptions of duration and succession of events, is of course a central feature of consciousness (Husserl 1964, Schutz 1964). Flaherty (2003) argues that perception of time can become the object of action as people work to shape their inner experience of time. His interview-based study explores the ways people attempt to organise themselves and other people in order to produce a more comfortable temporal experience for themselves, where events happen at what feels like the right time, in the right order, just often enough, just long enough. Even when people do not have control over the organisation of the actual activity, especially when it involves other people and occurs within the parameters of standardised clock and calendar time, people can still find local ways of modifying their inner experience, to make it feel, for example, that time is going more quickly (see also Roy's  well-known account of ‘banana time’ in the factory). Flaherty (2003) calls this work of customising individual temporal experience ‘time work’. I propose a broader and emptier notion of time work to refer to anything people do, deliberately and with some acquired skill, that in some way orients to time, whether this be inner temporal experience or common clock time. Then we can see that there are different kinds of time work, in addition to the work described by Flaherty.
In this article, I describe the time work that forms a central part of the work of adherence. The core of this work involves making a three-way alignment between the inner experience of time, standardised clock time, and the requirements of the medication schedule. Medication takers do considerable work setting up the conditions that make that alignment easier to achieve. But medication takers cannot stop there. The work of achieving scheduled doses involves more than time work: the pills must be swallowed to complete the dose. This other crucial part of the work of adherence is addressed in the second half of the article. People take steps to ensure that they and their pills will be together in the same place at dose time, which necessitates a kind of time-space co-ordination. They may also do emotional work to suppress feelings of rage and resistance or evoke a managerial, dose-administering self. Informing these various strategies and efforts is the work people do diagnosing their pill taking troubles as an exercise in self-understanding. Through all of this can be seen how the individual work and experience of HAART takes shape within the generalising mediation of the medications as social phenomena (Cohen et al. 2001, Dalgalarrondo 2000), the social organisation of clock time, and discourses of adherence and self-understanding.
This discussion of the work of adherence is based on interviews from a larger study exploring the health work of people living with HIV/AIDS in Southern Ontario in the late 1990s (Bresalier et al. 2002, McCoy 2005, Mykhalovskiy, McCoy and Bresalier 2004). The research was collaboratively conducted by a team of researchers and involved 16 focus groups and 21 individual interviews with a total of 79 participants, of whom 57 were men and 22 were women. Participants were recruited through community-based AIDS service organisations and medical clinics. Care was taken to include people living in a wide range of economic and social circumstances, as the intent was to learn how these circumstances shaped the kind of work they did around their health. The length of time participants had been living with a diagnosis of HIV infection ranged from several months to 15 years. Most were taking, or had taken, antiretroviral therapy.
The research was informed by the methodology of institutional ethnography, a project of inquiry that investigates the forms of institutional and discursive co-ordination that shape everyday actualities (DeVault and McCoy 2002, Smith 1987, 2005). The term ethnography is here used in the broad sense, and does not imply strictly observation-based methods of data generation. As is common in institutional ethnography, the research started from the experience of specific individuals (people living with HIV) and sought to understand both what that experience involved for them and how it took shape at the interface between local settings and extended, translocal relations of – in this case – health services, social services, the pharmaceutical industry, and community-based AIDS service organisations.
A central concept in institutional ethnography is the notion of ‘work’ as ‘what people do that requires some effort, that they mean to do, and that involves some acquired competence’ (Smith 1987: 165). Used in this way, the concept of work directs analytic intention to the embodied, purposeful, skilled ways that members accomplish the practical, situated activities of everyday life (Suchman 1987), such as carrying out a medication regimen. Here, there is some convergence with Corbin and Strauss's (1985) approach to the work of managing chronic illness, but with an emphasis on discovering how the everyday health work of people with HIV articulates to and is shaped by extended institutional and discursive relations of co-ordination and control.
Interview and focus group conversations covered a range of topics, including getting and using treatment information, making decisions about treatment, dealing with health professionals, managing treatment regimens, ensuring economic survival, and whatever else participants identified as part of the work they did around their health. For this article I am drawing on participants’ descriptions of the work of taking antiretroviral drugs. Examining these descriptions of pill taking and temporal practice, produced during research interviews, I recognise them as discursively-oriented accounts of actualities that always surpass what can be spoken. Nonetheless, I also maintain the ethnographer's conviction that it is possible to learn a great deal about the daily work of adherence through descriptions provided by the people who do it; indeed, institutional ethnography treats experiential accounts as authoritative, respecting individuals as the experts in their own lives, which is not the same as claiming for experience a prediscursive authenticity.
In reading the transcripts excerpts, I sought to gain a detailed appreciation of the work and experience the people were describing. I did not attempt to sort speakers by their reported success with adherence. My object was the taking of medication, not individual achievement, so from that perspective the unreliability of ‘self-reports’ evaporates as a problem; it did not matter whether individuals always or usually carried out the strategies they described. Nor was I aiming to develop a typology of reported strategies, but to discern the common task evoked for people when they undertake a HAART regimen with its standardised pills and dosing requirements. Specific strategies work to realise these standardised requirements within the unique circumstances and physiological and biographical particulars of any one individual's life. These are what people tell in their experiential accounts; the common work – and its institutional and discursive framing – comes into view when their accounts are read side by side, and in dialogue with each other. What is strongly visible across all of the accounts is the situated, active work that people do, day after day, aligning the standardised requirements of HAART and the material actualities of their lives. This is what I call the work of adherence.
Highly active antiretroviral therapy and the discourse of adherence
Highly active antiretroviral therapy (HAART) is a treatment combining three or more powerful drugs which, taken together, disrupt the reproductive cycle of the human immunodeficiency virus (HIV), thereby reducing the presence and activity of HIV in the body and limiting its effect on the immune system. Because the virus cannot be completely destroyed, therapy to suppress it must be continued indefinitely. A HAART regimen typically consists of three or four different medications selected from the pool of antiretroviral drugs approved for use and available in a particular country (over 20 drugs are approved in Canada). Most are in pill form. Early regimens in the 1990s commonly involved medications with elaborate dosing requirements and large numbers of pills. Over the past 10 years, the trend in the pharmaceutical industry has been to create antiretroviral medications with less frequent or restrictive dosing requirements and involving fewer pills per dose, often by combining different drugs into one capsule. However, the older drugs remain in use and are the only drugs that work for some people.
The call to adherence appeals to the way the drugs are designed to interrupt a viral reproductive cycle with its own natural rhythm. HIV is depicted as a ‘sneaky’ adversary, eagerly intent on replicating copies of itself in the cellular structures of a person's body (Thaczuk 2004: 16). Late or missed doses create windows of opportunity for the virus to reproduce or develop advantageous mutations, which can lead to drug resistance. It is in this context that people who frequently skip or miss-time their doses or periodically stop their regimens altogether get urgent lectures from their doctors about the importance of sticking to the schedule and repairing mistakes in a timely way:
- P1: I think with me, I was sat down because I was not doing it either and she [doctor] explained to me in no uncertain terms, you take them on time as close as you can. Just because you missed, unless you are not going to be able to get them, if you miss them for an hour, still take them.
- P2: I think I got the same speech (Focus Group 12).
The work of HAART adherence involves at its heart a kind of time work: ‘tak[ing] them on time as close as you can’. ‘On time’ references an alignment between a local instance of standard clock time and some given appointment or schedule, in this case, a medication dosing schedule. It is there that I begin this exploration of the work of adherence.
Realising the medication day
Schedules and instructions – the concept of the medication day
Medication instructions are usually based on the repeatable unit of the ‘day’. Although this day references the calendar or solar day, how it is conceived as a timing framework for pill taking can vary. It can be conceived as an indeterminate span of time in which a person is awake, often consisting of activity slots, such as meals and bedtime. The instructions for medication might be, ‘take one tablet once a day’, or ‘take two tablets twice a day with meals’. These are flexible instructions, leaving to the pill taker the timing of the meals and the doses, and not identifying as highly relevant the amount of time that should pass between the doses. Alternatively, the day can be conceived as a series of 24 stable-unit hours, with pill taking instructed to occur in a temporally exact way, with a specified number of hours separating doses. This stricter and more standardised kind of dosing instruction is used for antiretroviral drugs because of the need to maintain drug levels in the body to avoid viral breakthroughs. A few HIV drugs are to be taken every eight hours; many of them are prescribed to be taken 12 hours apart, and some are to be taken once a day, or 24 hours apart. Antiretroviral instructions may also specify the requisite condition of the body at the time of pill taking and for a period afterwards. For example, some medications are to be taken ‘on an empty stomach’. This does not call for a subjective assessment of hunger by the pill taker: it too is standardised in clock terms as meaning that the pill taker should not have eaten food in the two hours preceding the dose and should not eat for another hour after the dose. Some instructions specify recommended accompaniments to the dose, for example, that the dose should be taken with a full meal or light snack or lots of water. Furthermore, in addition to antiretroviral medications, a person may also be taking medication to treat the side effects of the drugs, medication to combat HIV-related infections, medication for other problems like depression or diabetes, and nutritional supplements to boost immunity and strengthen the vital organs. This can result in a daunting assortment of pills, with different dosing instructions invoking different kinds of ‘day’ as background framework and possibly requiring different bodily conditions for pill taking, which the pill taker must somehow co-ordinate into an overarching schedule.
Your medicine cabinet looks like your grandmother's! You have so many prescriptions for this and this . . . At seven a.m. you start – you are not finished until eleven. Some of the pills you have to take with meals, others on an empty stomach, others you cannot take with this one because it will react the wrong way . . . all kinds at different times. You have to remember all this, you almost have to be a medical doctor to be sick (Focus Group 4).
This combined, co-ordinated schedule – whether written out or carried in the head – functions as an ideal ‘medication day’, ideal in the dual sense of something that exists in thought and that is a desired goal or achievement. The job given to the pill taker is to ‘real-ise’ the combined medication schedule on any given, actual day, by performing actions that are viewable/reportable as competent realisations of the schedule. For any one dose the crucial first step is identifying when the time for the dose has arrived.
Recognising dose time
Understanding this work calls for a distinction between the inner experience of time and conscious awareness of socially-measured clock time. Clock time is abstract, standardised, shared, cyclical and endlessly repeated. Embodied experience occurs within a continuously unfolding now, the flux and flow of everyday life, the forward roll of cosmic time (Schutz 1964). In our inner experience of time, we perceive events and experiences as happening in succession, we have a sense of before and after, of past and future. We have a sense of duration, of time passing slowing or quickly, in a variable way (Flaherty 1999). Co-ordinating that ongoing inner experience with shared civic time (Schutz 1964) is a skill acquired from childhood, as we learn to function with an approximate awareness of where we are, in our embodied experience, in relation to clock time. The tension of that awareness varies, as does the relevance or urgency of synchronising inner experience, action, and clock time. Within a lived day, there will be moments of high awareness of clock time and active efforts to synchronise action with clock time, periods when one is somewhat aware of and oriented to clock time, but it is not a primary concern, and stretches of inner experience when the awareness of clock time loosens considerably.
When we include the embodied consciousness of any actual individual, we see that the work of taking medication ‘on time’ involves not just a two-way alignment between clock time and a schedule, but a three-way alignment between inner experience, clock time and the schedule. Recognising dose time with complicated dosing schedules requires a high awareness of clock time, involving frequent checks of the clock to re-establish alignment between inner experience and external clock time. Here is a description of that kind of work. The speaker is participating in a regimen that involves food restrictions, so he needs to co-ordinate his eating with his pill schedule in order that his body will be in the requisite ‘empty stomach’ condition at dose time.
I usually pretty much keep an eye on the clock throughout the whole day. The trigger for me is usually when I'm hungry, my immediate reaction is wow, where am I in relation to my next dosing, and can I eat now or can I not? and usually that keeps me on track, ’cause I'm like hungry at least three or four times during the day and I have a pretty good idea where I am on my schedule (Focus Group 15).
We can see this kind of work from another angle, from the experience of failing to make that three-way alignment at the right time.
I mean, you’re sitting there and then all of a sudden it's four o’clock [and] you’re supposed to take it at two o’clock (Interview 18).
Sometimes you find time goes so fast and you think, oh, my pills! (Focus Group 12).
Both accounts express the experience of a movement of consciousness in which inner experience snaps into alignment (‘all of a sudden’; ‘oh, my pills!’) with an awareness of clock time and the requirements of the medication schedule – only now it is late. The implied trouble here is the sort of inner experience in which a slower sense of duration is out of sync with clock time (‘[clock] time goes so fast’), so that the clock check occurs too late. For other people, the misalignment happens when they fail to recall the medication schedule, its relevance and its demands, in synchrony with the clock check that aligns inner experience and standard clock time. A person can be aware of clock time, but orienting to its relevance for other activities – such as when a television programme will start or arriving at an appointment on time. In this case, what has slipped from the arena of conscious attention is the medication schedule.
Strategies for recognising dose time
People described having developed strategies and routines to enhance their ability to achieve an alignment between inner experience, clock time and the medication schedule. One of the most common strategies involves the use of exogenous devices to signal pill time. For people whose medication does not involve the ‘empty stomach’ timing requirement, arranging for exogenous signals can free them from the need to maintain an attentive orientation to both the clock and the medication schedule. Whatever a person is doing, whatever her degree of alertness, she will be summoned into awareness of dose time when she hears the signal and interprets it as a call to take her pills.
Other strategies include a deliberate arrangement of comings and goings or the timing of activities in ways intended to promote the timely recognition of dose time. The mental act of achieving the three-way alignment is easier in some frames of mind and harder in others, so the strategy is an anticipatory one of putting oneself into – or keeping oneself from – certain places and circumstances which are expected to generate conditions that facilitate or impede the desired mental state.
Here is one man's account of his strategies for recognising dose time:
- P: First I started off on the beeper system. And then in the past, since I've been on the medications, I've gone through about six beepers. Like somehow they just die. So . . . for the morning I've got the TV. I've programmed so it can turn on and it's blasting throughout the whole house, so I have to get up to turn it off because my neighbours are probably sleeping. So then when I get up, I take my meds. So then, the three o’clock one – that one seems to me no problem.
- I: Are you usually home at three o’clock?
- P: No, I just take it with me. Then the eleven o’clock one, like sometimes, like if I go to bed at nine I say, Okay, I’ll pop that one. . . . cause the TV's programmed to go off at eleven. When I see the TV go off then I know it's time to take my meds. . . .
- I: What about if you’re out?
- P: Well, if I go out to a bar, what I’ll do is I’ll wait till after eleven to go out to the bar because that way – I've had problems with that before. I'd go out say eight, nine o’clock, then by eleven o’clock it's totally slipped my mind. And one time I had the beeper and I was at one of the bars and the beeper goes off and the guy at the next table goes, Oh, you’re HIV (Interview 21).
Beepers – small portable devices – or programmable wristwatches are common clock-time signalling devices. But they are fallible and have other disadvantages. In settings frequented by knowledgeable people, a person may be ‘outed’ by the beeper at an embarrassing moment. So this man still uses an exogenous device, but one that is more reliable and private. Note that his reported strategies focus on timing the 7 am and 11 pm pills, which pose more difficulty for him than the 3 pm dose. He describes a strategy of temporal-spatial co-ordination on nights he wants to go to a bar, remaining at home with the time-keeping television and away from pleasurable distractions until after the 11 pm dose has been achieved. His use of the television is also notable for the way he has programmed it in the morning to produce in himself a mental state (concern about the neighbours) more compelling than the desire to stay in bed, to promote his following through on the signal to rise and take his pills.
Finally, note his reference to taking the 11 pm pill at 9 pm on nights when he wants to go to bed early. Part of the work of accomplishing a medication regime involves interpreting acceptable degrees of flexibility and finding ways to realise ‘near enough’ instances of the abstract, ideal medication day in the actual material of always different, lived days. This may happen on an ad hoc basis, as the man above describes, or it might be incorporated into a reinterpretation of the medication schedule, altering the parameters of adherence, as another man explains below:
I have them at breakfast and dinner time. . . . You know, there's no real complexity in terms of when I take them. For a while I was concerned with having to have them at exactly the same time everyday. I sort of strayed from that. You don't necessarily get up the same time every day and sometimes I find working downtown, I don't get home until seven versus six type of thing. I fall into the routine of taking them when I have breakfast and when I have dinner. I don't think an hour here or there is going to change it too much (Interview 15).
This man has recast his mental medication schedule from one organised around the day as a series of stable unit hours to one organised around the day as consisting of activity slots in a predictably recurring series. Here, we also see a reference to the work of interpreting where the boundaries of acceptable dosing might fall. It is rarely possible for an individual to take ‘the 6:00’ dose exactly at 6:00 by the clock every day. Current medical advice is that any time within an hour on either side of the designated dose time is acceptable, although it is preferable to be as close as possible to the specified time. Individual medication takers may aim for a tighter variance, only feeling comfortable within a half-hour window, for example, or they may decide, like one of the speakers above, that on special occasions it is better to take a dose two hours early than to risk skipping it altogether, even when this means that the next dose will come ten hours, rather than eight hours later. From an adherence perspective, early doses are essentially deferred late doses, because they result in a longer-than-recommended span of time before the next scheduled dose; as with late doses the concern is that drug levels in the body will fall below the level needed to prevent viral breakthroughs. But as the second man describes, the passage of time is relevant here; a person might start off with a strong concern about timing the doses precisely and then, after some months or years, relax his timing practices, especially if his health remains fairly good. People who described a loosened dosing schedule often appealed to their blood counts and health state as evidence that their form of adherence was working.
When a person has developed fairly reliable strategies, doses can often be accomplished without a lot of deliberate attention. This results in an ironic problem for pill takers: when they get good at smoothly recognising dose time and downing their pills, it can happen that they do not retain a clear memory of having taken today's 7 pm dose, as opposed to yesterday's or the one the day before. If they know they sometimes do miss their doses, how should they interpret the lack of any clear memory of their last scheduled dose? If they don't have that snap-into-alignment experience of recognising that – oh no! – dose time passed a few hours ago, they could be missing doses altogether, rather than just taking them late. To address these potential problems, some pill takers arrange to leave traces of their pill taking:
In the morning I put all my pills and my supplements together so as I'm going through the day I see what I've taken and what I haven't ... because sometimes before that I was worried about missing a dose and just forgetting about it or not knowing if I had taken it or not, so with this pill box it allows me to see what I've taken or what I haven't taken. If I'm questioning whether I took a dose or not I just have to count them (Focus Group 1).
Pill boxes or dosettes are common devices used by people participating in regimens with multiple medications. These are, typically, plastic cases with individual compartments for each day of the week, sometimes with each day represented by multiple chambers for different doses arranged in a matrix, with the days of the week labelled across the top and mealtimes or activity slots going down (breakfast, lunch, dinner, bedtime). The pill taker or someone else can set up the doses in advance. As we shall see later, doing this facilitates completing the dose, but the account above highlights the way the pill box creates a visual representation of the medication schedule using the actual pills to be taken. It is both an iconic representation (Peirce 1965) of the ideal schedule, in its matrix-like design, and an index of the pill taker's realisation of the schedule, in that empty chambers and absent pills are traces of the activity they indicate – the taking of the pills. The pill box shows the pill taker where she ‘is’– on any particular embodied day – in the work of accomplishing the medication day.
Just as the use of exogenous signalling devices transfers some of the work of recognising dose time to a piece of technology, so is it possible to shift some of the timing work to another person. Very few people, however, described relying on another person to recognise dose time on their behalf or said that they provided that kind of service to other pill takers. One man, who lived in an assisted housing building for people with HIV, told how a friend would come to his apartment every day to give him his doses. Another man described a welcome division of labour between himself and his partner:
The unofficial agreement that we have in our house is that he takes care of the vitamin question – we both take those – so he lays out the morning dose or evening dose at the dinner table. So, I don't even have to think about remembering to take those. I manage the antivirals, the pain killers or whatever else is going on in terms of prescription drugs and the diarrohea, but he has taken over managing the vitamin part.
Both stories describe some transfer of mental responsibility as well as the transfer of some of the work of preparing the dose (the significance of that will be addressed later). What is also clear is the way taking the dose comes to have a companionable aspect, as an occasion for a visit or a shared moment in the everyday life of a couple. But these were rare stories. Most people talked about their medication work as something they did on their own.
When other people were mentioned in accounts of pill taking, they usually appeared as impediments or as occasioning additional work for the pill taker. In some cases, other people potentially present at dose time were not to know about the pill taker's seropositivity, so the task was finding ways of concealing the pill taking and other evidence, such as beepers or pill bottles, to avoid awkward questions. One man, whose afternoon dose occurred while he was at his place of employment, explained his strategy: ‘I run to the washroom every day at three o’clock and they start to think, wow, he is really regular’ (Focus Group 11).
Sometimes the issue was finding ways to align the clock-based structure of the imposed schedule with the more flexible rhythms of the person's social network – or to normalise a misalignment:
When I first went on the drug regime, it felt very oppressive, and it felt difficult for me having to ask for accommodation around when we would eat, if I was with friends, and you know, let's say a dinner party or something. And, I mean I'm over that now, because to me again it feels routine, and friends just know that . . . if they’re having a dinner party and Cory is invited, you have to stop eating by nine. Well, they can keep on eating but, like I can't, and the interesting part of it is just the progress of time. My reaction to that is very different than it was before. I mean now it's just, well, that's the way things are.
As already noted, it was not uncommon for people to talk about their medication work in ways that identified shifts in their thinking or their practice over time, describing how they had adjusted to life around a medication schedule or how they had adjusted their schedule or their expectations to fit more comfortably with the rhythms of their daily life.
Completing the dose
Recognising dose time primarily involves a movement of consciousness, although there may be physical activities to support it (setting beepers, checking clocks and watches). But actually completing the dose requires the physical act of taking medication. Consider what might be involved. First, the dose must be readied: the right pill bottles gathered up, bottle tops unscrewed, pills shaken out and the appropriate number of pills for the dose selected, the cap screwed back on. The necessary accompaniment to the dose must be readied: this may just be a glass of water, but it could also be a snack or a full meal which must be eaten whether or not the pill taker feels hungry. Then the pills must be put into the mouth and swallowed. Although for some people some of the time these activities are routinised to the point where not much overt attention is summoned, that only points to the practical skill involved. At other times, people experience difficulty carrying out some or all of the activities described above and do work to overcome their difficulties. People who have such troubles are highly conscious of the gap between recognising dose time and completing the dose; their accounts make visible forms of work that otherwise attract little notice from the pill taker.
Dose time can be recognised anywhere a person might be, provided she has access to a clock or beeper. But the dose can only be completed if the pill taker has pills and water to hand. A crucial piece of work therefore involves a kind of time-space-pills co-ordination: the pill taker takes steps to ensure that her body and her pills will be together in the same place when she recognises that dose time has arrived. People talked about doing this in different ways. Some described bringing themselves to the pills, organising their comings and goings so they would be at home for pill time:
I live around them. Cannot leave home without them kind of thing or have to come home for a certain time because I do not like to travel with them if I do not have to, so I will go to a friend's house and then I will have to leave to take my meds (Focus Group 12).
Other people described projecting a future course of action and organising things so that, wherever they are at dose time, they will have their pills and any necessary accompaniment:
A lot of it is just being super organised. Having your cupboards laid out, keeping it all together – it is a bit of work. Devising little systems, remembering to take your stuff with you, look at your calendar for each day, oh, I have got to go to a meeting tonight, I better make sure to take this with me and that kind of thing (Focus Group 2).
For some people, as already noted, time-space co-ordination is not just about having their pills wherever they are; it requires locating a suitably private place to take their pills. For other people, with very different lives, the logistical issue is a matter of coordinating access to the necessary accompaniments of water and sometimes food. A man who described himself as a streetperson explained: ‘Like, walking around with a packsack on and I've got freaking half of it filled with medications and just trying to find water to take them is sometimes not easy’ (Interview 14).
In an earlier section, I described one type of anticipatory work: arranging to be in a place or frame of mind favourable to the work of making the three-way alignment between inner experience, clock time and the requirements of the pill schedule. Here we see a complementary kind of anticipatory work, designed to achieve the spatial co-ordination of body, pills and water at the right time.
Managing the problem of will
For some people some or even most of the time, the act of taking pills follows routinely on the act of determining dose time; the conscious and describable work they do around their medication schedule is oriented to managing the alignment between inner consciousness, clock time, the pill schedule, the physical availability of the pills and necessary accompaniments, and the presence of other people. There is, however, no inevitable causal link between recognising dose time and taking pills, even when the pills are ready to hand. Actually taking the pills demands a mental and emotional movement of volition that extends into physical action. But the movement of volition may not happen. What may happen is a stronger movement of revulsion or anger. There is always the potential to balk at pill time:
The pill bottles were too small and I would open every bottle every damn time and it would make me mad and sometimes I would miss doses because I had to open every bottle (Focus Group 12).
I woke up at three o’clock and I thought I'm not getting out of bed to take some pill, so forget it. I just shut the alarm off and went back to sleep. I said screw this (Focus Group 1).
These accounts formulate a problem of will: sometimes the pill taker doesn't want to take the pills. And given the many, sometimes serious, side effects that go with the drugs, the rigour of the schedule, and just having to do it, day after day without a holiday, moments of dread or resistance are hardly uncommon. People who were striving to do adherence described the work they did to neutralise or overcome their resistance at dose time. This might involve developing strategies to mitigate the aspects of pill-taking they saw as making them balk, such as the fiddly materiality of the pills and pill bottles. Thus, some people devise ways to reduce the number of times they have to open pill bottles and count out pills. A common way to do this is with a multi-chambered pill box. We've already seen that dosettes provide a visual representation of the medication day or week that also has the advantage of recording the pill-taking accomplishment. They also reduce the work of bottle opening:
I have this huge thing from the drug company and there is a platter of pills and it has three compartments, but like if you have five [doses] you run into problems. It works fine. I cannot put my vitamins in there . . . it would have been great to just set them up and be ready for the week. I find the week goes fast though. I just have to open my vitamins every time. I usually do that in the middle (Focus Group 12).
Here we can recall the man whose partner lays out the morning and evening vitamins and recognise how that assistance also helps to facilitate completion of the dose.
Then there is the situation described above, of hearing the alarm and knowing what it is for, but shutting it off and going back to sleep. This highlights a potential weakness associated with exogenous signals of dose time. People who locate dose time through their mental work of establishing a synchrony between inner experience and clock time are preparing themselves mentally to take their dose. People who arrange for exogenous signals, as we have seen, are relieved of maintaining a high awareness of clock time, which frees them to concentrate on other things, including sleep, but it can happen on occasion that when the signal does come, they find themselves reluctant to heed its call to action. Here, we can recall the man who has programmed his television to come on loudly in the morning, thereby greatly enhancing the probability that he will actually get out of bed and take his pills.
But while some people devised strategies, like the dosette and the blaring television, which work to narrow the gap between recognising dose time and completing the dose by removing impediments or providing incentives, other people described doing work to overcome their physical and emotional resistance at dose time. HAART treatment involves ingesting a substance that can cause nausea, diarrhoea or socially embarrassing bodily gases. For some people, the lead up to dose time is suffused with mounting dread:
I’ll be taking my meds at 4 o’clock and I'm not looking forward to it. I dread it every time I have to take another pill (Interview 14).
Mental preparation for the dose may therefore require more than simple intention. Here two men in a focus group discover they had a similar experience taking a medication called ritonavir:
- P1. Well even to think that your dose is coming up and I'm thinking to myself . . .
- P2. I know . . .
- P1. Ugh.
- P2. I couldn't – I had to like shove them down my throat, where I would literally gag . . .
- P1. Yeah, gag . . . Even – even thinking about them took me like half an hour to take my pills (Focus Group 16).
The work described here (perhaps with some exaggeration for effect) involves a period of mental preparation that eventually effects a kind of bifurcation, a summoning of a dose-administering self who somehow gets the rebelling, gagging body to swallow the pills. But this dose-administering self is only temporarily activated, requiring the same work to produce it at every dose.
For other people, recognising dose time is less a matter of physical rebellion and more an occasion for strong emotions of anger, despair, or stubborn refusal, which they may attribute to their feelings about the medication or having HIV. For example, several people said they hated the way daily pill taking kept reminding them they had HIV. Quite a few people talked simply about surges of anger:
Sometimes I would just be so angry I just would not take them. I would look at them and get angry and say, ‘no, I am not taking those’ (Focus Group 12).
People who have these reactions at dose time and who are trying, nonetheless, to carry out their regimen, may cultivate a cajoling or supervisory self that talks the rebelling self around.
I open this one cupboard and it is like a pharmacy – but then I look at them and I say okay, do your job and then I take them (Focus Group 8).
These last two accounts both describe a similar moment of looking at the pills and not wanting to take them. Both formulate what happens next as an occasion of self-talk. ‘I’ in the first account speaks resistance and refusal; this excerpt is from a longer account about unsuccessful pill taking. The ‘I’ in the second account speaks exhortation. When the speaker opens the cupboard (presumably having recognised dose time and intending to take her pills), there is a dangerous moment of dread and resistance faced with a depressing array of medications. What happens next is a conscious marshalling of a supervisory self who exhorts the rebelling self to get to work. By casting the pill taking as a job, she normalises its unpleasantness: no one expects a job to be fun, ‘doing your job’ often involves doing something you find distasteful or boring, but you just do it. Other people, however, explained that they resisted the medication precisely because realising the scheduled doses felt like a job or military drill, and they did not see themselves as, or want to become, the sort of person who willingly subordinated spontaneity to an imposed routine. ‘I am not a clock puncher!’ said one man (Focus Group 11). What all this makes visible is the kind of work people do analysing and explaining their pill-taking troubles as an exercise in self-understanding.
Here is an intersection between the discourse of adherence and broadly circulating discourses of self-understanding and self-improvement (Rose 1990). People engage in projects of self-understanding which they apply diagnostically to their pill taking. Their feelings toward their pills then become an object not just of analytic understanding or justification but of intervention, as they work to inculcate a more favourable emotional orientation toward the pills. A woman who was reluctantly preparing to start a regimen said she spent a month ‘talking to’ her pills and trying to ‘make friends’ with them, as recommended by her doctor. Some people described enlisting the expertise of counsellors and psychiatrists to help them discover the psychological roots of their resistance or develop habits of mind better suited to the work of generating a supervisory, dose-administering self. As noted above, one theme in such understandings is the self in (social) time, specifically, the individual's orientation to participation in exogenously determined and inflexible clock-based schedules.
My project here has been to examine the forms of work and consciousness into which people are recruited when they undertake HAART treatment consisting of standardised medications and time-based dosing instructions. I deliberately began outside the discourse of adherence as a framework for inquiry or object of critique. Instead, I started from the recounted experience of people taking HAART, a field of action in which the discourse of adherence is already present as an active organiser, giving urgency to their pill taking efforts and drawing them into relations of accountability. My focus was on the daily, core work of accomplishing doses, which I described as involving particular kinds of time and self work. In terms of the latter, I especially noted forms of self work oriented to overcoming problems of timing or resistance understood (by the pill taker) as in some way related to the hardships or the symbolic attributes of realising an externally given schedule.
What is the relevance of this? It contributes to the study of illness experience and practices of medication use by offering a close examination of an aspect of medication practice that has not received much research attention. Adherence comes into view as a describable activity, a form of work. Instead of focusing on explaining or justifying medically deviant practice, I have examined the work that goes into striving for adherence, going beyond a catalogue of strategies to discern the common, essential tasks that standardised medications carry into individual people's lives. The various strategies are important, however; through them people make a bridge between their individual biographies and circumstances and the standardised dosing instructions. In this way the study also speaks to the investigation of pharmaceutical products as social phenomena generated and circulated through institutional processes of research, invention, testing, regulation and marketing (Cohen et al. 2001, Dalgalarrondo 2000). My focus is on the user end, as the drugs and standardised dosing requirements hook dispersed individuals into common forms of work and consciousness.
This study also contributes to the understanding of social practices and experiences of time, by offering a close examination of one particular activity in time, one form of time work. In some ways, what HAART demands of people is not unusual. Co-ordinating their individual activity with clock time and exogenous schedules is already a feature of most people's lives. People regularly make the kind of three-way alignment I describe here whenever we gear into the schedules of school and work, access services, or get together with friends, for example; identifying that the appointed time to do something has arrived is a form of work that transcends activities and settings. What makes HAART an unusual context for that work is the combination of high urgency and accountability coupled with no legitimate time out, no safe days off.
It would be interesting to see future studies exploring what adherence work, including the time work aspect, looks like for other medications and other pill takers. Different regimens evoke different ‘medication days’ and generate their own characteristic challenges. For example, HAART drugs are not symptom-control drugs; one of the challenges for people starting antiretroviral therapy is to learn to dissociate the act of taking medication from their immediate bodily experience. In ordinary life, the sequence goes like this: feel bad, take a pill, feel better. With HAART, for many people, especially in the early months of a new regimen, the sequence goes the other way: the pills make them feel sick. In that respect, HAART is like self-administered chemotherapy. But many medications for chronic ill-health conditions do function as symptom-control drugs, and that would inform adherence work. Perhaps in some cases, where the adherence discourse is not strong, the notion of adherence work does not even apply. Furthermore, most of the people on HAART are adults under the age of 65. Among the general public, elderly people are among the greatest consumers of pharmaceutical products. The orientations of the elderly to medications and adherence have been studied (e.g. Ankri et al. 1997, Lumme-Sandt, Hervonen and Marja 2000); but what does adherence work involve for them? Similarly, what is the work of people who do adherence on behalf of someone else, such as a child or another adult? What I have called the core work of adherence is always evoked in specific contexts that shape the way that work is experienced and accomplished.
The author would like to thank Eric Mykhalovskiy, Barbara Schneider, Darien Taylor, and two anonymous reviewers; Laurette Lévy's many contributions to the overall research project deserve special mention.
Research team members were, in alphabetical order, Michael Bresalier, Loralee Gillis, Craig McClure, Liza McCoy, Eric Mykhalovskiy, Darien Taylor and Michelle Webber. The research was funded by a grant from the Glaxo Wellcome Positive Action Fund, administered by the AIDS Program Committee of the Ontario Ministry of Health.