Lived Experience of Patients with Spinal Muscular Atrophy

Abstract

              The qualitative phenomenological research has the objectives to narrate and describe lived experience of patients with spinal muscular atrophy. Ten informants were purposively selected from among patients who had been diagnosed with spinal muscular atrophy and had been suffering from the illness for more than 10 years. Data were collected using in-depth interviews with an interview guide which was analyzed and interpreted applying the Husserl framework and 7 steps of Colaizzi’s method of data analysis. The findings indicated that the informants defined the lived experience through 4 (theme) transitional phrases: 1) loss of control; 2) adjustment to limitations; 3) transcending limitations; and 4) living with hope. The results of this study provided in-depth understanding of experiences faced by the patients of spinal muscular atrophy in terms of disease trajectories, living life and coping with transitional phrases of disease. The data was useful in order that the healthcare workers and relevant organizations could provide support and necessary infrastructures; arrange appropriate environment; provide treatment; and prevent complications appropriately with consideration on flexibility of living along with the patient’s suffer and overcoming the limit of oneself.