Visions of living with Parkinson’s disease: A photovoice study

Abstract

The purpose of this study was to explore the illness experience of persons living with Parkinson’s disease. Using the visual elicitation method, Photovoice, we asked participants to take a series of photographs that for them, represented the everyday challenges related to the disease. The photos served as starting and reference points for the individual narratives provided by each participant as they engaged in a follow-up dialogical interview with the researcher. Using thematic analysis of the interview data, the research team, together with the participants, identified one overarching theme, “staying determined,” and five sub-themes “staying active,” “finding purpose and meaning,” “finding joy,” “keeping it private,” and “staying connected despite a loss.” We were able to gain important insights into how participants perceived their disease, including the “inward” and “outward” coping strategies they used in their daily lives. We believe that through this visual elicitation participatory, action-oriented data collection method the participants also gained new insights into their lives through their photographs and the related interviews, and were empowered as a result.