title: Independent living with Duchenne muscular dystrophy and home mechanical ventilation in areas of Japan with insufficient national welfare services.
abstract: 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.
authors: Division of Human Health Sciences, Department of Nursing, Graduate School of Medicine, Kyoto University, Kyoto Prefecture, Japan. yamaguchi.miku.32w@st.kyoto-u.ac.jp
authors: Miku
authors: M
authors: Yamaguchi
authors: Machiko
authors: M
authors: Suzuki
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D036262:Empirical Research; D006262:Health; D006297:Health Services Accessibility; D006699:Home Care Services / Q000600:supply & distribution*; D006801:Humans; D057187:Independent Living / Q000523:psychology; D007564:Japan / Q000453:epidemiology; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000628:therapy*; D033262:Narration; D026684:Personal Autonomy; D036301:Qualitative Research; D012121:Respiration, Artificial; D012934:Social Isolation; D012946:Social Welfare; D055815:Young Adult
keywords: Grounded theory; health; home care; isolation; physical impairment; qualitative; social inclusion
references: Clin Pediatr (Phila). 2002 Mar;41(2):105-9
references: 11931326
references: J Adv Nurs. 2010 Apr;66(4):753-62
references: 20423363
references: Sociol Health Illn. 2009 May;31(4):554-68
references: 19220805
references: BMC Palliat Care. 2006 Sep 04;5:6
references: 16948863
references: Pediatr Rehabil. 2005 Jan-Mar;8(1):17-28
references: 15799132
references: J Dev Behav Pediatr. 2011 Nov;32(9):644-50
references: 22008789
references: Int J Qual Stud Health Well-being. 2010 Aug 02;5:
references: 20689774
references: Jpn J Nurs Sci. 2011 Dec;8(2):194-202
references: 22117583
references: J Pain Symptom Manage. 1998 Sep;16(3):153-62
references: 9769617
references: Child Care Health Dev. 2012 Nov;38(6):809-16
references: 21880056