Negotiating medications: patient perceptions of long-term medication use

Negotiating medications: patient perceptions of long-termmedication use

P. C. Carder* PhD, N. Vuckovic� PhD and C. A. Green� PhD MPH1

*Center for Aging Studies, Department of Sociology & Anthropology, University of Maryland BaltimoreCounty, Baltimore, MD, USA, �Kaiser Permanente Center for Health Research, Portland, OR, USA and�Departments of Public Health & Preventive Medicine and Psychiatry, Oregon Health & ScienceUniversity, Portland, OR, USA

SUMMARY

Objective: To investigate how adults with one of

several chronic illnesses (bipolar disorder,

multiple sclerosis, rheumatoid arthritis, schizo-

phrenia/schizoaffective disorder, or systemic

lupus erythematosus) perceive their need to take

medications during the course of their illness.

Method: Eighty-three adults, aged 18–64 years, all

members of a health maintenance organization,

were interviewed. Each participant completed an

ethnographic interview that was transcribed

verbatim and analysed using grounded theory

techniques.

Results: Participants described two forms of

ongoing efforts to negotiate their need for medi-

cations, internal and external. The former categ-

ory includes struggles over self-identify (e.g.

worries about becoming dependent on drugs,

feeling like a ‘guinea pig’). The latter includes

negotiations with health care providers over the

type, route, and frequency of medication use.

Dimensions of both negotiation types include

acceptance and resistance. Specifically, patients

with chronic illness must manage not only drug

regimens, but also renegotiate their self-identities

as formerly well persons. During this dynamic

process, patients may accept and/or resist taking

prescribed medications.

Conclusion: Practitioners should recognize that

patients experience not only physical, but emo-

tional side effects of medications, and that resist-

ance might be part of a negotiation process rather

than a final stance.

Keywords: adherence, chronic illness, compli-

ance, medication, negotiation, qualitative

INTRODUCTION

Patient adherence to prescribed medications has

long been a concern in clinical, behavioural, and

social science research. Most of the original

research on this topic either treated non-compliant

patients as deviant or focused on the physician–

patient encounter to understand why patients fail

to follow prescribed regimens. After more than

three decades, researchers have identified various

factors that explain patient behaviours, including

socio-cultural influences (1–10). Cultural con-

ceptions of medications shape our belief and

knowledge of medications, whether prescribed,

over-the-counter, homeopathic, or illegal. Thus,

taking medications involves not only the desire to

treat symptoms, it is an act that involves social

interaction, cultural norms, and personal know-

ledge and beliefs that mediate how and if the

individual follows prescribed regimens (5–7,

11–14).

Another area that has benefited from socio-

cultural study is the connection between chronic

illness and self-identity. Charmaz (15) describes

identity goals that chronically ill persons hold to

sustain their definition of self as either a well, able,

or sick, disabled being. Estroff (16, 17) considers the

self following the onset of chronic psychiatric dis-

orders: A diagnosis such as schizophrenia leads to

self questioning about personal biography, past,

present and future. Karp (10) notes that persons

diagnosed with depression go through an ‘exten-

sive interpretive process’ that includes under-

standing the disease and its causes, the meanings

of medication side effects, and interactions and

attitudes toward health care providers (p. 81).

Received 25 June 2003, Accepted 1 September 2003

Correspondence: Paula C. Carder, Center for Aging Studies,

Department of Sociology & Anthropology, University of Mary-

land Baltimore County, Baltimore, MD 21250, USA. Tel.: 410 455

8732; e-mail: [email protected]

Journal of Clinical Pharmacy and Therapeutics (2003) 28, 409–417

� 2003 Blackwell Publishing Ltd 409

Persons with chronic illness necessarily have long-

term interactions with health care providers.

Hayes-Bautista (4) describes how patients and

physicians bargain to ‘settle’ their differences of

opinions on appropriate treatment. His observation

that bargaining may be unilateral (e.g. the patient

alone), or bilateral (e.g. between the patient and

practitioner) provides underpinnings for the pre-

sent paper.

Until recently researchers have independently

examined the socio-cultural context of medications

and self-identity in chronic illness. The present

paper merges these two avenues of existing schol-

arship. Specifically, we describe patterns of medi-

cation use and discuss how individuals with

chronic illness make on-going negotiations in an

effort to balance health and illness while preserving

their self-identity. We focus on patients’ percep-

tions of medications, complementing prior research

on social constructs like compliance, adherence,

and concordance with prescribed regiments (18).

These data are from a study to assess the commu-

nity-based care needs of adults who have diseases

characterized by repeated flare-ups or unstable

courses resulting in either temporary or permanent

inability to manage tasks of daily living (19, 20). We

use these data to interpret the role that medications

play in the self-identity of chronically ill individu-

als and describe the various negotiations related to

long-term medication use.

METHOD

Sample description

This paper results from in-depth interviews with 83

adults diagnosed with a chronic illness. Partici-

pants were current adult subscribers to Kaiser

Permanente Northwest, a non-profit group health

maintenance organization located in the Northwest

United States. The goal of the larger study was to

learn about the home and community-based care

needs of non-elderly adults with disabilities. Par-

ticipants were also interviewed about their symp-

toms, effects of illness on daily life, and interactions

with health care providers and informal caregivers.

Each had been diagnosed at least 1 year prior with

a diagnosis category requiring on-going disease

management and health service utilization: bipolar

disorder, multiple sclerosis, rheumatoid arthritis,

schizophrenia/schizoaffective disorder, or sys-

temic lupus erythematosus. These disorders,

characterized by deteriorating courses, acute exac-

erbations of symptoms, or both, are associated with

community care needs. Most of the participants

had been living with chronic illness for several

years, ranging from 1 to 38 years, with an average

of 15 years. The sample includes persons with a

range of physical and psychological function at the

time of the interview.

Participants ranged in age from 18 to 64 years

(mean = 48Æ2, SD = 10Æ9). The majority (90Æ4%)

identified themselves as white (non-Hispanic), four

as Black/African American (4Æ8%), three as white

and Spanish/Hispanic (3Æ6%) and one as Asian/

Pacific Islander (1Æ2%).

Sample recruitment

The sample was identified using health plan

records that include ICD-9 diagnoses. To create a

pool of potential participants, we selected all indi-

viduals who had retained one of the target diag-

noses for at least 1 year. We randomly selected a

subset of these members for recruitment and, for all

but those with mental health diagnoses, sent letters

(signed by study investigators) informing them

about the study and requesting their participation.

The study met Institutional Review Board stand-

ards, and potential participants were assured that

their decision would not affect their access to

medical services. We telephoned those who did not

respond to our letter. Before contacting potential

participants with mental health conditions, we

asked mental health providers to determine if their

patient was stable enough to participate in the

study (<1% were screened out in this process). For

those identified in this manner, we sent a letter

describing the study (signed by study investigators

and the member’s mental health care provider) and

followed with a phone call. Only 22 people refused,

and another six could not be located.

Data collection

We used a semi-structured interview guide that

permitted the order of questions to vary in

response to the natural progression of the conver-

sation. The in-depth interview assessed need for

community-based care, including questions about

� 2003 Blackwell Publishing Ltd, Journal of Clinical Pharmacy and Therapeutics, 28, 409–417

410 P. C. Carder et al.

the individual’s ability to manage daily activities,

symptom type and severity, types of help received

and needed, and concerns about future arrange-

ments. Although the study was not designed to

assess medication use in and of itself, we asked

how participants managed their medications

(if any) and how they accessed prescription

medications.

The principal investigators, second and third

authors of this article, conducted many of the

interviews. A master’s-level clinically trained

counselor also conducted interviews. Most partici-

pants were interviewed in their home, although a

few chose to meet at the Kaiser Permanente Center

for Health Research. All interviews were audio-

taped, transcribed verbatim, and averaged about

60 min.

DATA ANALYSIS

Analysis began with all three authors reading the

transcript of each interview. The first two authors

defined descriptive codes that identified talk con-

cerning the practical realities of managing mul-

tiple medications, side effects, and symptoms. The

coding and analysis process follows Charmaz (21)

description of interpretive grounded theory, begin-

ning with open coding and continuing with inter-

pretive coding and analysis. Using ATLAS/ti, a

qualitative analysis software application (22), we

began by attaching open code terms like ‘med

search’, ‘symptoms’ and ‘diagnosis’ to sections of

the interviews that described those topics. After

reading and discussing summaries of text flagged

by these codes, we developed the interpretive

codes ‘resistance’, ‘acceptance’, and ‘tolerance’. The

latter two codes were later merged as they were

difficult to distinguish.

Analytic meetings about the significance of how

or whether people resisted and/or accepted the

need for medications led to the concept of ‘nego-

tiation’. We observed that individuals did not

either accept or resist, but followed a broader

process of negotiation. This new code term was

applied to sections of interview transcripts refer-

ring to overt mentions of interactions with care

providers and others as well as less explicit

descriptions of the individual’s efforts to maintain

control, achieve balance, or alternate between

descriptions of acceptance and resistance. Follow-

ing grounded theory methods (21) we reviewed

literature on ‘negotiation theory’ in order to refine

this concept (23–262 ) and consider how it applied to

the data.

To identify such sections of transcripts that

described negotiations, we both reread the text and

used ATLAS/ti text search procedures on terms

such as ‘bargain’, ‘struggle’, ‘balance’ and ‘deal’.

The latter term was especially fruitful in locating

sections of text that highlighted the give-and-take

involved in managing chronic illness and related

treatments. ‘Resistance’ includes discussions by

individuals who resist taking any, or additional,

medications; ‘acceptance’ describes the individ-

ual’s acknowledgment that medications are neces-

sary to treat severe symptoms.

Using the software query tool to retrieve com-

binations of the code terms acceptance and resist-

ance, we found that individuals sometimes

describe both attitudes toward their medications,

and may eventually negotiate a ‘truce’. For exam-

ple, one individual with rheumatoid arthritis was

willing to accept a prescription medication as long

as the dosage remained below the maximum

allowable dosage, but resisted taking more because

she wanted to hold something in reserve if her

condition got worse.

We include both internal and external negotia-

tions, with examples of the former including those

that occur within the self, as when an individual

consciously pursues physical activity that he/she

knows will cause pain and suffering the next day,

requiring additional pain medications, cessation

of usual activities, or both; and examples of the

latter including interactions with health care

professionals.

Medication use in chronic illness

Chronic illness represents an intrusion into the

lives of individuals, their families, and their social

networks (15). The specific disorders studied here

result in varying levels of disruption, from daily

symptoms to random flare-ups. We summarize

how medications either resolve or exacerbate the

disorder, including symptom management and

side effects. Next we identify the types of negotia-

tions individuals describe in managing their med-

ications, including: those that occur within the self

over balancing symptoms, side effects, beliefs, and


Negotiating medications 411

identity and those that occur with medical pro-

viders over the type, quantity, and route of

administration of medications.

Prescription medications are important to people

with persistent symptoms caused by chronic ill-

ness. Chronically ill persons have varying, some-

times contradictory, goals of using medications to

achieve health, of eliminating medications from

their lives, simplifying their medication regimens

to accommodate work or lifestyle, or of taking

medications that suit their medical philosophy (e.g.

homeopathic or ‘non-Western’).

RESULTS

Taking medications was a part of daily life for most

of the people in this study, routine to some, less so

to others. All but six people in this sample took

medications on a daily basis (two had recently

stopped taking medication), and 43% took five or

more medications per day. In addition, 30% of the

participants described using either alternative

medications (e.g. vitamins, Chinese herbs, naturo-

pathic remedies) or treatments (e.g. massage, bio-

feedback, chiropractic) in addition to allopathic

medication. Although the interview guide included

a question about medication management, most

participants raised the topic of medications before

being asked. They described a range of responses

to their prescription medications. For some, the

treatments successfully managed symptoms, while

others described on-going efforts to find the right

medication, or combination of medications, to

manage symptoms such as pain, inflammation,

depression, or hallucinations, without side effects.

Most described changes over time, with periods of

stability marred by either medication resistance

or side effects that required a change in dose,

regimen, or type.

Internal negotiations: medications

and self-identity

The relationship between taking medications,

symptoms, and self-identity is complex. Negoti-

ation refers to efforts individuals make to manage

their sense of self while dealing with symptoms

such as pain, fatigue, hallucinations, and mobility

limitations. In addition to practical concerns like

organ damage, side effects, and the hassle of

managing complicated regimens, taking medica-

tions daily may not square with the individual’s

self-identity. Negotiating with the self includes

efforts to find or establish order, to adapt, to be

most like one’s image of oneself. The individual at

times fights symptoms and unacceptable behav-

iours and at other times accepts negative condi-

tions to accomplish personal goals. The individual

may question whether or not she/he is really sick.

This may be especially true for people with disor-

ders that take a hiatus, such as multiple sclerosis,

and for individuals with mental illness whose

symptoms are in control. Such individuals question

whether they are cured, in remission, or if the

medications are controlling their symptoms. In

contrast, individuals with joint pain and inflam-

mation caused by rheumatoid arthritis often say,

‘If I don’t take my pain meds, I know it’.

Charmaz (15) notes that persons with chronic

illness must either make identity tradeoffs or lower

their identity goals to match their lessened capaci-

ties. Similarly, we observed that people relinquish

some identities in order to retain others; they

renegotiate their identities. For example, a man

with bipolar disorder who ‘never was one to take

very many pills’ must now reinterpret himself as a

drug-taker, which to some implies ‘dependence’.

To two participants, a woman with rheumatoid

arthritis and a man diagnosed with schizoaffective

disorder, taking medications implied the extreme

of becoming a self-described ‘dope addict’. The

following exchange between the interviewer and a

man diagnosed with schizoaffective disorder

summarizes, in a graphic way, how many indi-

viduals felt about their need for medications:

Interviewer: ‘So tell me about managing your

medications. The bag full of pill bottles here’.

Participant: ‘I look at it and I start to feel... I mean I

don’t want to be some little weaseled old man like

dragging a Radio Flyer, red wagon behind me full of

pills. You know, I wish I could just learn to live

without... I’m real tired of being dependent. My

well-being and my life are dependent on pills, and

it’s real tiresome...’

Finding the right medication or combination of

medications is often a long process: ‘the thing

about MS is that everything’s an experiment, and

some days you just get real sick and tired of being a

damn guinea pig’. This perspective of being a

human experiment was shared by others, including



persons diagnosed with Lupus, bipolar disorder,

rheumatoid arthritis, and two with schizophrenia.

This exchange between the interviewer and a

woman diagnosed with rheumatoid arthritis

exemplifies that the difficulty of finding the right

medication takes not only time, but emotional

acceptance.

Interviewer: ‘You mentioned that it took a while to

get your medications straight, how long a time was

that?’

Participant: ‘I would say probably five, six months.

A lot of it was very upsetting to my stomach. A lot

of it didn’t do a thing for me. Number one: it was

very hard to take medicine because I was not a pill-

popper’.

Even the choice to go off medications can require

ongoing identity negotiation, as this woman with

bipolar disorder explains: ‘I now am not taking

Lithium...it will be two years in March of 2000 that

I’ve been off of it, but everyday it’s kind of like

carrying a bowling ball over your head, because,

you know, I have to be well aware of who I am and

I really am, and at times it’s still a struggle to

maintain a balance...’. To her and to many others,

knowing ‘who I am’ requires ongoing struggle.

Dimensions of internal negotiations: resistance

and acceptance

Health care practitioners and researchers identify

patient resistance to taking prescription medica-

tions as a ‘profound’ problem (17). We heard from

people who resisted taking medications because it

conflicted with their identity as either a healthy

individual or someone who normally did not take

medications. In contrast to Karp’s (5) description of

resistance as an initial stage in interpreting the

medication experience, our participants described

on-going and periodic resistance to taking medica-

tions. As with participants in other studies (3), some

people reduce their intake to curtail side-effects or

discover the dosage that best matches their personal

threshold for symptom management. Certainly,

resistance may be a common first reaction following

a diagnosis, as indicated by this woman with

bipolar disorder: ‘...the funny thing with life is that

you have to get to a really bad place before you even

will consent to take drugs, you know, and I was

going very high when I was diagnosed. When I

went on medication, it slowed me down. My body

was slowed down...there is like this real struggle in

the beginning taking the medication, what it does to

you’. Ongoing resistance may occur regarding type

of medication, route of administration, side effects,

and the number of medications the individual is

willing to take. Using a hypothetical exchange with

her physician to explain, one woman with rheu-

matoid arthritis said:

‘When you have about three or four days like that

when you’re hurting and you’re swelling, and you

know you are, and you’re just waiting for it to go

away and promising yourself you’re not gonna say

anything to your doctor, cause you know what

they’re gonna do. They’re just gonna give you

another pill. ‘‘Okay, let’s take another pill, take

another pill’’. Well, okay, if I take this pill, what’s

gonna happen when I come back to you in four

months and say, ‘‘Oh, I’m hurting’’. ‘‘Well then

you’re gonna have to have a shot’’. So then I come

home and I figure out how old I am and how many

shots I’m gonna have if I live to be eighty, and I’m

not gonna do it! I don’t want to be on pills and

shots. I want to be in control of my own destiny, my

own health. I don’t want to be dependent on a pill or

a shot. You know, I suppose maybe someday I’ll

have to. I have to take some pills now. If I don’t, I’m

not gonna function. It seems like that’s the answer

to everything is take another pill. There’s no other

option. There’s GOT to be other options’.

Negotiating with one’s body by resisting addi-

tional medications despite intense pain, a woman

with lupus said, ‘but as far as the pain, unless it’s

really, really out of … beyond what I can say,

because I don’t like to be on Prednisone at all. I

don’t like what it does to me. And so I kind of play

it too you know, if I can get by with it and it, you

know, if I can just let it rest a lot and let it go away,

then I do that before I fill it’.

While many participants were generally accept-

ing of their need for medications, others expressed

both acceptance and resistance. Charmaz (15) des-

cribes ‘surrendering’, a process of going with the

flow rather than fighting either an acute episode or

the entire illness; it is active, intentional, and dif-

ferent from resignation. Surrendering corresponds

to acceptance, as this exchange between the inter-

viewer and a woman diagnosed with bipolar

disorder explains:

Interviewer: ‘Anything else you can think of in

terms of how your life has changed?’



Participant: ‘I’m trying. Well, I have to take

medications, and I don’t like to take medication. I

don’t like this idea that I have to take a pill to keep my

moods in check. You know, and if I don’t take the

medication, then things get all out of whack, you

know, and the things that, you know, the counselors,

‘‘Now don’t stop taking it, even when you feel like

you’re doing just fine’’, type of, you know. It’s real

easy to just kind of want to stop, but then it’s like

‘‘Well, gosh, they say it could end up getting worse’’,

and you know, it’s like ‘‘Man I was pretty bad, I

don’t want it to get worse than that’’, you know.

And there’s restrictions that, you know, things you

can and can’t do with medication, you know, there’s

side effects of the medication and things that you

have to, you know, health risks that you have to be

aware of. So you have to be monitored for that and,

you know, so there’s kind of hassles along there’.

External negotiations: health care practitioners

and medications

The participants in this study describe both battling

and working with their physicians over medica-

tions. Sometimes patients abandon one physician

in order to find one who will act as an ally in the

battle against symptoms, side effects, or a partic-

ular regimen. These negotiations include decisions

over whether to take medication, what type of

medication to take, how much, and by what route.

In some cases, as with this person with rheumatoid

arthritis, a kind of partnership forms: ‘I’ve got

rheumatologists, my doctors, and we work with

my medicines and everything together, you know.

And I’m glad they’ve gotten out new medications

because they’ve done a wonder for me’. And from

a woman with bipolar disorder: ‘So when the

lamotrigine was discontinued, I didn’t go back on

Depakote, and that was kind of a mutual thing

with the doctor and I’. Similarly, this woman

diagnosed with multiple sclerosis said,

‘I was on the Avonex. And I went in and talked to

Dr. [NAME] in December of ’98 and we talked for

long and hard about the Avonex problems I was

having and about going on the, he suggested, going

on Copaxen. One of the reasons I went on the

Avonex was because it was a one week...it was once

a week shot, rather than an every day thing. I

wouldn’t have to deal with it everyday. So that’s

why. And once I went on disability, he suggested

that I go on the Copaxen and get off the Avonex

’cause I was having too many side-effects from it...

So I said let’s do it. So we did’.

Interviewer: ‘And how has that been for you?’

Participant: ‘It’s been okay. It’s an adjustment to

take a shot a day’.

While some participants work in partnership

with their physicians, others describe on-going

battles, as a woman diagnosed with rheumatoid

arthritis said: ‘Then my doctor put me on depres-

sion pills and that ticked me. Her and I fight back

and forth about the pills all the time. She’s down to

earth and fights me a lot, but she did make me go

on them’.

A few participants describe debating their pro-

vider to acquire naturopathic or Chinese medica-

tions. One woman with multiple sclerosis described

her commitment to ‘injectable vitamins’ which she

obtained from her naturopathic doctor. Eventually

she was able to negotiate a prescription from her

health plan provider: ‘And I fought with [HMO] for

years and finally, you know, my neurologist said,

‘Well, how can I not, with what I see here, you

know, okay, I’ll write them for you’. But it was a

fight. It was a struggle to get them to do it for me’.

Dimensions of external negotiations: resistance

and acceptance

Many of these participants had what could be

called medication careers: they had taken medica-

tions for years, and they knew what worked and

did not work. One source of resistance derives

from patient dissatisfaction with physicians who

simply prescribe medications whenever the indi-

vidual has new or additional symptoms. Patients

want alternatives to medications, as this woman

with lupus explains,

‘And we’ve tried some medicine. [DOCTOR] has

tried some medicine. I don’t like the after-effects. I

take enough drugs. You have to understand, I took

steroids for like eight years. It took me two and a half

years to totally get off of them. It took another year

to actually grow hair back again. So I’m real leery of

drugs. I’m just terribly leery of drugs because of the

Cortisone that I took for so long...Prednisone that I

took for so long. And the aspirin doesn’t do that to

me and I’ve told them, I said ‘‘There’s one thing, if

you ever, ever, ever say Cortisone or Prednisone, I

won’t do it’’. I said ‘‘I would rather die than go back



on the Prednisone. It is a bad drug and I just won’t

do it’’. He said ‘‘Yes, you will’’. I said, ‘‘Well, let’s

wait until it happens and then we’ll see. But don’t

ask me to do it’’’.

In addition to the physical wear and tear of a

medication career, some people feel the emotional

toll of the trial and error involved in finding the

right medication or combination. A woman with

bipolar disorder said, ‘... some of the psychiatrists

were, you know, ‘‘Here, here’s a whole bunch of

medication’’, you know, they’d hand you five, six

different medications at once. You know, and, I

mean, how do you know which one’s working when

you’re handed five or six meds at once...what’s

working, what’s not working, what’s giving you

this side-effect, what’s not. You know, and it took a

while before I found the psychiatrist who sat and

listened... you know, you sit and wait for 15, 20

minutes to go see a psychiatrist, and then you’re in

there for two or three minutes and they hand you a

handful of different meds and you walk out the

door’. In such cases, patients resent that the health

care provider does not have the time to listen,

evaluate, and suggest alternatives that correspond

with their definition of self.

Not all participants resisted their health care

provider’s recommendations. Some of these pati-

ents were fortunate to take only one or two pre-

scriptions that effectively managed their

symptoms. A woman with rheumatoid arthritis

whose treatment requires regular injections des-

cribed it this way: ‘[Doctor] and I have a real rap-

port. I don’t go into him and complain or anything.

I just say, ‘‘Well this is how it is, so what are we

gonna do?’’ He likes to come at me because he can

always come at me with needles, and I go, ‘‘Okay’’.

And it doesn’t bother me. I mean, when they drain

my knees, I don’t even flinch’. Accepting the rec-

ommendations of one’s provider might include

finding the right one, as this woman did after

rejecting two others, in addition to developing

‘rapport’. Accepting advice, however, likely also

involves accepting the illness and the need for

medications, which for many of these participants

required on-going negotiations.

DISCUSSION

Taking medications for life requires on-going

negotiations, both internal negotiations over

self-identity, and external negotiations with health

care providers. Although people may resist or even

rebel, medication is an important way to control

the symptoms of chronic illness. For those who are

asymptomatic while on medications, as are many

of the participants of this study, taking medications

is the only daily sign of illness. This reality may

lead the individual to question the need for medi-

cations, their diagnosis, and the reliability of their

provider.

In chronic illness, negotiation is a process

patients use to sort out serious problems and to

decide what aspects of a given problem or out-

come, are acceptable and which are not. Patients

who negotiate are not necessarily in control, nor do

they make what practitioners would describe as the

best choice in managing chronic illness. Conrad’s

(11) study of people diagnosed with epilepsy

indicated that individuals develop medication

practices, and that these practices may be at odds

with those prescribed by the physician. Similarly,

the participants in this study described ways of

negotiating to achieve balance with their notions of

self and with their health care provider. For many,

taking medications resulted in a negative self-

identify as someone who was a ‘pill popper’,

‘dependent’, or ‘not in control’.

Study limitations and directions for future research

Although the interview guide did include ques-

tions about medication management, it was not the

primary focus of the study. Therefore, although

medication discussions arose at several points

during most interviews (i.e. while discussing

diagnosis and symptom management), these con-

versations were relatively brief. Further, the find-

ings are limited by including only one interview

with each participant.

This qualitative study leads to additional

research questions: How do people who negotiate

differ from those who do not? How can practi-

tioners continue the negotiation process with a

patient who makes unreasonable (unhealthy)

requests? This study is unique in combining a

sample of persons with either physical (lupus,

multiple sclerosis, rheumatoid arthritis) or psy-

chological (bipolar disorder, schizophrenia) disor-

ders. However, we found more similarities than

differences between these groups who share many



of the same concerns in managing medications

over a lifetime. Future research might similarly

combine rather than segregating individuals with

different diagnosis categories.

Implications

Practitioners need to recognize that their patients

may experience not only physical side effects of

medications, but emotional ones as well. Health

care providers might attend to their patient’s con-

cerns about what it means to be prescribed a

medication or regimen that may very well continue

for the rest of his/her life. Resistance may be a

patient’s means of seeking consonance with his/

her former self, the one that was not sick, the one

who was not a ‘pill popper’, rather than an affront

to medical authority.

Both resistance and acceptance are dimensions

of the negotiation process yet neither is final.

Resistance does not necessarily shut down the

negotiation, rather it allows the individual to act-

ively question and participate in his/her treatment

plan. Resistance and acceptance may occur alter-

nately or in concert. It is an ongoing process of

negotiation throughout illness, not something that

occurs only at diagnosis. Thus, practitioners should

not take a patient’s resistance as a dead end but

rather as a stage in the process. Health care pro-

viders could guide people through negotiations,

helping them to identify the pros and cons of dif-

ferent choices, how to best self-regulate, and the

effect that symptoms, side effects, and medication

use have on the body and on self-identify.

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Negotiating medications: patient perceptions of long-term medication use