The lived experience of taking neuroleptic medication by persons with schizophrenia

Abstract

For most persons with schizophrenia (PWS), adherence with taking neuroleptic medication defines their course of illness. PWS who consistently take medication spend less time in the hospital, preserve recovery gains, and place less burden on families and society. Most extant research focuses on the correlation of discrete, provider-defined variables with the outcome of adherence. In contrast, this research used the person's perspective on the meaning of medication-taking to describe the complex phenomena of neuroleptic medication adherence by PWS. A phenomenological framework was used to examine the lived experience of neuroleptic medication-taking among PWS. Ten males and one female with a DSM-IV diagnosis of schizophrenia were interviewed regarding their experience of taking neuroleptic medication. Interviews were transcribed verbatim by the investigator and meanings were extracted that rendered a description of the essential structure of medication-taking by PWS. An audit trail was established that verified the research process and findings. Interview analysis showed their experience had three interconnected, overlapping theme categories Being-Out-of-Being, On a Rocky Road, and Making a New Way. In summary, the essential structure revealed that: Acquiring an unasked for and frightening being-out-of being was the genesis of the medication-taking experience, and although it brought some relief, medication never fully remitted the illness. Consistent medication-taking developed over time and in concert with finding the right medication. The right medication was one with tolerable side effects and that suppressed the illness enough so that PWS could recover a sense of self. With consistent medication-taking, PWS learned about their illness response, developed personal treatment plans, and decided medication-taking was essential for keeping their illness controlled. In the end, even when they took the medication, PWS had to endure the uncertainty of living with an ever-present but submerged illness that skewed their sense of the world. These findings provide a description of the little-researched experience of living with schizophrenia and its troublesome primary treatment, that may identify points of nursing intervention for aiding persons with schizophrenia in the difficult task of neuroleptic medication-taking.