The lived experiences of patients with spinal muscular atrophy: A phenomenological study

Context: Spinal muscular atrophy (SMA) is a neuromuscular disease which, in addition to physical disability, causes psychological and social problems for patients and their families. If physiological and mental disorders continue to persist for a long time, it leads to serious deterioration in the patient’s physical condition, influences the treatment process, and prevents the outcome of the therapies.

Aims: The aim of this study was to explore the lived experiences of patients with SMA. Setting and Design: In this qualitative study, a total of six participants (five patients and one patients’ wife) were selected by purposive sampling method.

Material and Methods: Data were collected by semi-structured interview. Eleven interviews were conducted and analyzed by Colaizzi’s descriptive phenomenological approach. Statistical Analysis Used: Data were analyzed by One Note soft ware version 14.0 with Colaizzi’s descriptive phenomenological approach.

Results: Two main themes – “tragic life” and “vague future” – emerged from data analysis. They had four categories including “physical and psychological problems,” “limitations and lost opportunities,” “concerns,” and “uncertain future.”

Conclusions: These patients experienced a lot of physical and psychological impairments in their life. They have many concerns and lost some opportunities. Therefore, policymakers and authorities should support these patients for participating as an effective members in the society, consequently their feeling improve by getting independent.