Dignity and the Meaning of Life: The Life Experience of Spinal Muscular Atrophy Patients

Purpose: The purpose of this study was to explore the experience of patients who suffer from Spinal muscular atrophy (SMA).

Methods: Qualitative approach was adopted by conducting in-depth interview with 9 cases that were recruited from one medical center in southern Taiwan, to collect information from their experiences. The transcripts of the interview data were analyzed by using Colaizzi's (1978) phenomenological methodology. Content analysis was used to conclude and identify these four main themes out of the 9 interviews.  

Results: Through the interview,there are four common themses which respectively are loss of control, breakthrough the limitation, pursue the dignity and regain the hope. 

Conclusion: The results of this study can develop an effective life adjustment from the psychological process of the patient suffer from SMA. To face their life in positive way, even when they were exhausting. Moreover, the findings can be clinically applied as evidence based, and medical staff can assist the patients and their family by understanding the disease progression. Finally, we can help the client to integrate themselves and regain their hope.