SSM: Qualitative Research in Health (Dec 2023)
Medication as a social prosthesis: People with Parkinson's negotiating medication
Abstract
In this article we describe the emotions, responses, and reactions inherent in everyday life, enabled through medication use (mainly levodopa) by people with Parkinson's disease. Ethnographic observations revealed that, rather than taking levodopa on a prescribed schedule, participants learned how and when to take supplemental doses in order to feel and function naturally as they did pre-Parkinson's. Participant observation was conducted with 25 individuals with Parkinson's disease. Data included interviews, observations, photos, and videos. Constructivist grounded theory analytic procedures generated a three-phase process with a theoretical core of Medication as a Social Prosthesis, using “prosthesis” metaphorically. First, Grasping the Situation, is a process of reading bodily symptoms, learning personal and physical constraints, understanding the limits of medication, and finding supportive peer consultations. During the second phase, Gaining Competence, participants learned to synchronize medications with planned activities to counter their symptoms. This behavior was risky and required backup plans for accessing emergency medication. The last phase, Embodying Medication, describes the integration of medication into each person's identity and enabled social functioning despite advancing disabilities. In this way, the frequency and dosing of the medication was controlled by each person, and not the medical prescriber, according to personally defined needs to preserve self.
