Independent living with Duchenne muscular dystrophy and home mechanical ventilation in areas of Japan with insufficient national welfare services

In Japan, there is no national 24-hour home care system for people with severe impairments. Despite this fact, a small number of people with Duchenne muscular dystrophy on home mechanical ventilation pursue independent living. Therefore, our aim was to better understand the process by which these in...

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Main Authors: Miku Yamaguchi, Machiko Suzuki
Format: Article
Language:English
Published: Taylor & Francis Group 2013-08-01
Series:International Journal of Qualitative Studies on Health & Well-Being
Subjects:
Online Access:http://www.ijqhw.net/index.php/qhw/article/download/20914/29796
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spelling doaj-da72ac6d6e144874a04317378d61483c2020-11-24T22:07:19ZengTaylor & Francis GroupInternational Journal of Qualitative Studies on Health & Well-Being1748-26231748-26312013-08-01801810.3402/qhw.v8i0.20914Independent living with Duchenne muscular dystrophy and home mechanical ventilation in areas of Japan with insufficient national welfare servicesMiku YamaguchiMachiko SuzukiIn Japan, there is no national 24-hour home care system for people with severe impairments. Despite this fact, a small number of people with Duchenne muscular dystrophy on home mechanical ventilation pursue independent living. Therefore, our aim was to better understand the process by which these individuals arrived at this goal for independence (i.e., choosing to live at home in Japan instead of in special sanatoriums that provide sufficient support and care). Twenty-one participants were interviewed in 2011 and 2013. The interviews were recorded, transcribed, and analysed following a grounded theory approach. These individuals placed particular emphasis on their personal choice regarding where and how they live as well as on whom they depend. Therefore, the core element underlying participants’ goals for independent living was self-reliant independency. To improve their social inclusion, the strategies used by the participants to retain their autonomy in an underdeveloped Japanese welfare system by establishing relationships with people in their communities can prevent them from experiencing social isolation. This could serve as an example to their counterparts in other countries.www.ijqhw.net/index.php/qhw/article/download/20914/29796Grounded theoryhealthhome carephysical impairmentqualitativesocial inclusionisolation
collection DOAJ
language English
format Article
sources DOAJ
author Miku Yamaguchi
Machiko Suzuki
spellingShingle Miku Yamaguchi
Machiko Suzuki
Independent living with Duchenne muscular dystrophy and home mechanical ventilation in areas of Japan with insufficient national welfare services
International Journal of Qualitative Studies on Health & Well-Being
Grounded theory
health
home care
physical impairment
qualitative
social inclusion
isolation
author_facet Miku Yamaguchi
Machiko Suzuki
author_sort Miku Yamaguchi
title Independent living with Duchenne muscular dystrophy and home mechanical ventilation in areas of Japan with insufficient national welfare services
title_short Independent living with Duchenne muscular dystrophy and home mechanical ventilation in areas of Japan with insufficient national welfare services
title_full Independent living with Duchenne muscular dystrophy and home mechanical ventilation in areas of Japan with insufficient national welfare services
title_fullStr Independent living with Duchenne muscular dystrophy and home mechanical ventilation in areas of Japan with insufficient national welfare services
title_full_unstemmed Independent living with Duchenne muscular dystrophy and home mechanical ventilation in areas of Japan with insufficient national welfare services
title_sort independent living with duchenne muscular dystrophy and home mechanical ventilation in areas of japan with insufficient national welfare services
publisher Taylor & Francis Group
series International Journal of Qualitative Studies on Health & Well-Being
issn 1748-2623
1748-2631
publishDate 2013-08-01
description In Japan, there is no national 24-hour home care system for people with severe impairments. Despite this fact, a small number of people with Duchenne muscular dystrophy on home mechanical ventilation pursue independent living. Therefore, our aim was to better understand the process by which these individuals arrived at this goal for independence (i.e., choosing to live at home in Japan instead of in special sanatoriums that provide sufficient support and care). Twenty-one participants were interviewed in 2011 and 2013. The interviews were recorded, transcribed, and analysed following a grounded theory approach. These individuals placed particular emphasis on their personal choice regarding where and how they live as well as on whom they depend. Therefore, the core element underlying participants’ goals for independent living was self-reliant independency. To improve their social inclusion, the strategies used by the participants to retain their autonomy in an underdeveloped Japanese welfare system by establishing relationships with people in their communities can prevent them from experiencing social isolation. This could serve as an example to their counterparts in other countries.
topic Grounded theory
health
home care
physical impairment
qualitative
social inclusion
isolation
url http://www.ijqhw.net/index.php/qhw/article/download/20914/29796
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AT machikosuzuki independentlivingwithduchennemusculardystrophyandhomemechanicalventilationinareasofjapanwithinsufficientnationalwelfareservices
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