論文

査読有り
2013年

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 AND WELL-BEING
  • Miku Yamaguchi
  • ,
  • Machiko Suzuki

8
1
開始ページ
20914
終了ページ
記述言語
英語
掲載種別
研究論文(学術雑誌)
DOI
10.3402/qhw.v8i0.20914
出版者・発行元
CO-ACTION PUBLISHING

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.

リンク情報
DOI
https://doi.org/10.3402/qhw.v8i0.20914
PubMed
https://www.ncbi.nlm.nih.gov/pubmed/23981723
Web of Science
https://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcAuth=JSTA_CEL&SrcApp=J_Gate_JST&DestLinkType=FullRecord&KeyUT=WOS:000323699200001&DestApp=WOS_CPL
ID情報
  • DOI : 10.3402/qhw.v8i0.20914
  • ISSN : 1748-2623
  • eISSN : 1748-2631
  • PubMed ID : 23981723
  • Web of Science ID : WOS:000323699200001

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