Abstract

The aim of this study was to explore the life experiences of patients hospitalized in a muscular dystrophy ward in Japan, with particular focus on their eating experiences. Participant observation and unstructured interviews were conducted, and data analyzed by employing Merleau-Ponty’s phenomenology. Nine patients agreed to participate in this study, although only five were included in the analysis. The overarching theme of patients’ eating experiences was “cultivating new eating habits,” which patients nurtured according to their surrounding environment and in response to the increasing medical support and their progressive functional decline. The new eating habits were organized into five sub-themes: “moving my body at my own will,” “eating independently,” “learning to accept the percutaneous endoscopic gastrostomy tube,” “an alternative to having meals” and “using tube feeding.” These new eating habits engendered in patients a “richer,” multisensory perception of eating, one where they do not merely rely on taste.

Key words: Muscular dystrophy ward, patients, eating experiences, phenomenology.