Living with illness and self-transcendence: the lived experience of patients with spinal muscular atrophy.
OBJECTIVE
The aim of this study was to explore the lived experiences of patients afflicted with spinal muscular atrophy.


BACKGROUND
Existing research studies on spinal muscular atrophy address the physical and psychological effects and complications of the disease; they also provide suggestions for how to improve the current management of this disease. However, information is limited on the disease process and the lived experience of spinal muscular atrophy patients.


METHODS
A phenomenological approach was conducted.


METHODS
Through 18 in-depth interviews recorded by a pen voice recorder, this study collected data obtained from a purposive sample of nine patients from the, 'Taiwan spinal muscular atrophy Families,' between November 2010-August 2011. The audio recordings were transcribed verbatim and data were analysed using Colaizzi's steps.


RESULTS
Four themes and eight subthemes were identified: a loss of control (loss of muscular strength and independence), breaking limitations (assistive device use and mobility design), transcending limitations (independence/autonomy and social development) and living with hope (cherishing life and self-control). The results showed that the lived experiences of the spinal muscular atrophy patients involved living with illness, transcending the self and pursuing the meaning of life. Facing a life-threatening illness, these patients made self-adjustments in their lifestyles and exerted themselves to positively cope with hardships and maintain dignity and self-control.


CONCLUSIONS
These findings could serve as evidence-based practice resources for healthcare professionals in helping individuals and their family members gain an in-depth understanding of spinal muscular atrophy's progression and life course and assist individuals in improving self-integrity to with hope.
Department of Nursing, Kaohsiung Municipal Ta-Tung Hospital, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Taiwan.
Hsin-Mei
HM
Ho
College of Nursing, Fooyin University, Kaohsiung, Taiwan.
Ying-Hua
YH
Tseng
Division of Pediatric, Department of Nursing, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Taiwan.
Yu-Mei
YM
Hsin
College of Nursing, Kaohsiung Medical University, Taiwan. fanhao@kmu.edu.tw.
Fan-Hao
FH
Chou
College of Nursing, Kaohsiung Medical University, Taiwan.
Wei-Ting
WT
Lin
D000223:Adaptation, Psychological; D005190:Family; D006801:Humans; D009134:Muscular Atrophy, Spinal / Q000523:psychology*; D036301:Qualitative Research; D013624:Taiwan
chronic illness; disability; family; lived experience; nursing; phenomenology; qualitative approaches; self-control; self-transcendence; spinal muscular atrophy