Asian nursing research | 2021
Self-Care Experiences of Adolescents with Spinal Muscular Atrophy.
Abstract
PURPOSE\nWe examined the self-care experiences of adolescents with spinal muscle atrophy (SMA) and their perceptions of the interactions between their body and the environment.\n\n\nMETHODS\nWe interviewed ten adolescents with SMA aged 13-18 years old regarding personal care practices. Purposive sampling was conducted in two medical centers in northern Taiwan. Data were analyzed using the Giorgi analysis method.\n\n\nRESULTS\nFour constitutions were identiļ¬ed: 1. limited space for independent development, 2. multiple reconstructions of self-image to improve physical ability, 3. self-care of disease, and 4. developing activity styles to accommodate social culture.\n\n\nCONCLUSION\nThe self-care lived experiences of patients reflect dynamic changes in the body and environment. Self-existence was exhibited by adjustment, practice, and creativity of physical activity to integrate into society. Nursing staff should understand the self-care experiences and needs of adolescents with SMA to develop a database of self-care skills. This study recommended that nursing staff improve their ability to guide patients in taking care of themselves by developing body awareness self-care courses and individual care plans in response to various stages of disability to help patients delay deterioration, realize their physical potential, and promote independence and social development.