{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T22:18:20Z","timestamp":1783030700109,"version":"3.54.6"},"reference-count":49,"publisher":"Wiley","issue":"11","license":[{"start":{"date-parts":[[2016,6,30]],"date-time":"2016-06-30T00:00:00Z","timestamp":1467244800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Kaohsiung Municipal Ta-Tung Hospital of Taiwan","award":["KMTTH-99-015"],"award-info":[{"award-number":["KMTTH-99-015"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Advanced Nursing"],"published-print":{"date-parts":[[2016,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aim<\/jats:title><jats:p>The aim of this study was to explore the lived experiences of patients afflicted with spinal muscular atrophy.<\/jats:p><\/jats:sec><jats:sec><jats:title>Background<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>A phenomenological approach was conducted.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Through 18 in\u2010depth interviews recorded by a pen voice recorder, this study collected data obtained from a purposive sample of nine patients from the, \u2018Taiwan spinal muscular atrophy Families,\u2019 between November 2010\u2013August 2011. The audio recordings were transcribed verbatim and data were analysed using Colaizzi's steps.<\/jats:p><\/jats:sec><jats:sec><jats:title>Findings<\/jats:title><jats:p>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\u2010control). 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\u2010threatening illness, these patients made self\u2010adjustments in their lifestyles and exerted themselves to positively cope with hardships and maintain dignity and self\u2010control.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>These findings could serve as evidence\u2010based practice resources for healthcare professionals in helping individuals and their family members gain an in\u2010depth understanding of spinal muscular atrophy's progression and life course and assist individuals in improving self\u2010integrity to with hope.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jan.13042","type":"journal-article","created":{"date-parts":[[2016,6,13]],"date-time":"2016-06-13T11:43:14Z","timestamp":1465818194000},"page":"2695-2705","source":"Crossref","is-referenced-by-count":28,"title":["Living with illness and self\u2010transcendence: the lived experience of patients with spinal muscular atrophy"],"prefix":"10.1111","volume":"72","author":[{"given":"Hsin\u2010Mei","family":"Ho","sequence":"first","affiliation":[{"name":"Department of Nursing Kaohsiung Municipal Ta\u2010Tung Hospital Kaohsiung Medical University Hospital Kaohsiung Medical University Taiwan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ying\u2010Hua","family":"Tseng","sequence":"additional","affiliation":[{"name":"College of Nursing Fooyin University Kaohsiung Taiwan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yu\u2010Mei","family":"Hsin","sequence":"additional","affiliation":[{"name":"Division of Pediatric Department of Nursing Kaohsiung Medical University Hospital Kaohsiung Medical University Taiwan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fan\u2010Hao","family":"Chou","sequence":"additional","affiliation":[{"name":"College of Nursing Kaohsiung Medical University Taiwan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wei\u2010Ting","family":"Lin","sequence":"additional","affiliation":[{"name":"College of Nursing Kaohsiung Medical University Taiwan"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2016,6,30]]},"reference":[{"issue":"3","key":"e_1_2_10_2_1","first-page":"44","article-title":"A stress model for parents of children with Duchenne muscular dystrophy","volume":"53","author":"Chen J.Y.","year":"2006","journal-title":"Journal of Nursing"},{"issue":"1","key":"e_1_2_10_3_1","first-page":"603","article-title":"The magnetic resonance study of patient with muscular atrophy","volume":"5","author":"Cheng K.W.","year":"2009","journal-title":"Taiwanese Journal of Applied Radiation and Isotopes"},{"issue":"6","key":"e_1_2_10_4_1","first-page":"893","article-title":"Recent development in genetic diagnosis for common single gene disorders","volume":"8","author":"Chien S.C.","year":"2004","journal-title":"Formosan Journal of Medicine"},{"issue":"6","key":"e_1_2_10_5_1","first-page":"759","article-title":"Spinal muscular atrophy","volume":"31","author":"Chou L.L.","year":"2000","journal-title":"Journal of Medical Sciences"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2004-0668"},{"key":"e_1_2_10_7_1","first-page":"48","volume-title":"Existential Phenomenological Alternative for Psychology","author":"Colaizzi P.F.","year":"1978"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1097\/00006199-199603000-00011"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1080\/13607869956172"},{"key":"e_1_2_10_10_1","unstructured":"DeegD.(2013)Longitudinal aging study Amsterdam. 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