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.
Highlights
Muscular dystrophies are a clinically, genetically, and biochemically heterogeneous group of disorders that share distinct clinical-pathological features on muscle biopsies (Emery, 2002)
The purpose of this study is to describe the life experiences of those patients who have lived in a muscular dystrophy ward since their childhood, focusing on their eating experiences and to get valuable suggestions for nursing practice
The new eating habits were organized according to the following five themes that emerged from the data analysis: “moving my body at my own will,” “eating independently,” “learning to accept the percutaneous endoscopic gastrostomy (PEG) tube,” “an alternative to having meals” and “using tube feeding.”
Summary
Muscular dystrophies are a clinically, genetically, and biochemically heterogeneous group of disorders that share distinct clinical-pathological features on muscle biopsies (Emery, 2002). Because the progression of muscular weakness characteristic of the disease causes numerous problems in the everyday lives of those who suffer from it (Ahlström and Gunnarsson, 1996), some researchers have investigated the many types of support offered to muscular dystrophy patients. The survival rates of young men with Duchenne muscular dystrophy have increased due to the development of mechanical ventilators and other medical technology. This has led to research on the quality of life of patients supported by this technology (Kohler et al, 2005; Narayanaswami et al, 2000). To investigate patients experiences directly, researchers have employed a number of methods, including phenomenological methods (Nätterlund and Ahlström, 1999; Pehler and Craft-Rosenberg, 2009), inductive content analysis (Boström and Ahlström, 2005; Nätterlund et al, 2001), ethnographic case studies
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