Negotiating medications: patient perceptions of long-term medication use

To investigate how adults with one of several chronic illnesses (bipolar disorder, multiple sclerosis, rheumatoid arthritis, schizophrenia/schizoaffective disorder, or systemic lupus erythematosus) perceive their need to take medications during the course of their illness.

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.

Participants described two forms of ongoing efforts to negotiate their need for medications, internal and external. The former category 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.

Practitioners should recognize that patients experience not only physical, but emotional side effects of medications, and that resistance might be part of a negotiation process rather than a final stance.