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

Yamaguchi M, Suzuki M - Int J Qual Stud Health Well-being (2013)

Bottom Line: These individuals placed particular emphasis on their personal choice regarding where and how they live as well as on whom they depend.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.

View Article: PubMed Central - PubMed

Affiliation: 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

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.

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Related in: MedlinePlus

Self-reliant independency. The concepts converging on the core category as the study participants’ data unfolded are shown. Their expansion of the concept of independence changed with disease progression. Beginning with facing disease, followed by physical dependence and then autonomous action, the study participants discovered their ability to live independently within their physical limits. After that, the concept of independence was condensed as self-reliant independency, which meant having more autonomy in decision making than in the sanatoriums. In the case of participants, this was exemplified by moving out of the sanatoriums. Participants obtained independence without being limited by physical dependency. Original strategy then helped them to maintain their independent living and broaden the possibilities for their self-reliant independence.
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Figure 0001: Self-reliant independency. The concepts converging on the core category as the study participants’ data unfolded are shown. Their expansion of the concept of independence changed with disease progression. Beginning with facing disease, followed by physical dependence and then autonomous action, the study participants discovered their ability to live independently within their physical limits. After that, the concept of independence was condensed as self-reliant independency, which meant having more autonomy in decision making than in the sanatoriums. In the case of participants, this was exemplified by moving out of the sanatoriums. Participants obtained independence without being limited by physical dependency. Original strategy then helped them to maintain their independent living and broaden the possibilities for their self-reliant independence.

Mentions: The interview data yielded 142 codes that fell into five categories, with self-reliant independency identified as the core category (see Figure 1). Four categories (facing disease, physical dependence, autonomous activity, and original strategy) were found that are related to self-reliant independency. The following section will discuss each of these categories, beginning with the core category, self-reliant independency.


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

Yamaguchi M, Suzuki M - Int J Qual Stud Health Well-being (2013)

Self-reliant independency. The concepts converging on the core category as the study participants’ data unfolded are shown. Their expansion of the concept of independence changed with disease progression. Beginning with facing disease, followed by physical dependence and then autonomous action, the study participants discovered their ability to live independently within their physical limits. After that, the concept of independence was condensed as self-reliant independency, which meant having more autonomy in decision making than in the sanatoriums. In the case of participants, this was exemplified by moving out of the sanatoriums. Participants obtained independence without being limited by physical dependency. Original strategy then helped them to maintain their independent living and broaden the possibilities for their self-reliant independence.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC3755181&req=5

Figure 0001: Self-reliant independency. The concepts converging on the core category as the study participants’ data unfolded are shown. Their expansion of the concept of independence changed with disease progression. Beginning with facing disease, followed by physical dependence and then autonomous action, the study participants discovered their ability to live independently within their physical limits. After that, the concept of independence was condensed as self-reliant independency, which meant having more autonomy in decision making than in the sanatoriums. In the case of participants, this was exemplified by moving out of the sanatoriums. Participants obtained independence without being limited by physical dependency. Original strategy then helped them to maintain their independent living and broaden the possibilities for their self-reliant independence.
Mentions: The interview data yielded 142 codes that fell into five categories, with self-reliant independency identified as the core category (see Figure 1). Four categories (facing disease, physical dependence, autonomous activity, and original strategy) were found that are related to self-reliant independency. The following section will discuss each of these categories, beginning with the core category, self-reliant independency.

Bottom Line: These individuals placed particular emphasis on their personal choice regarding where and how they live as well as on whom they depend.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.

View Article: PubMed Central - PubMed

Affiliation: 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

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.

Show MeSH
Related in: MedlinePlus