Self-care Experiences of Adolescents with Spinal Muscular Atrophy.

PURPOSE: We examined the self-care experiences of adolescents with spinal muscle atrophy (SMA) and their perceptions of the interactions between their body and the environment.

METHODS

We interviewed ten adolescents with SMA aged 13-18 years regarding personal care practices. Purposive sampling was conducted in two medical centers in northern Taiwan. Data were analyzed using the Giorgi analysis method.

RESULTS

Four constitutions were identified: (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.

CONCLUSION

The 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.