Assessing the perceptions of mothers raising children with trisomy 18 requiring medical care at home
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- Koshiyama Kento
- Gifu City Hall
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- Endo Shinsaku
- Nagoya City University Graduate School of Nursing
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- Hotta Noriko
- Nagoya City University Graduate School of Nursing
Bibliographic Information
- Other Title
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- 医療的ケアの必要な18トリソミーの児を在宅養育する母親の思い
Description
<p> In this study, we aimed to assess the perceptions of mothers raising children with trisomy 18 requiring medical care at home. We conducted semi-structured interviews with six mothers. A qualitative descriptive data analysis identified five categories of perceptions, namely: “Fulfillment from normal daily life with family despite uncertainties about the course”, “Relief gained through peers and social connections”, “Difficulties with advanced medical care for complications”, “Psychological burden of acute deterioration of life-threatening or worsening condition”, and “Suffering due to inadequate social resources and medical provision for children with trisomy 18”. Subsequently, we suggested several support measures. These included ensuring that fathers share in the joy of caregiving at home; providing information and support so that social connections can be maintained; providing respite support, social resources, and medical technical assistance; providing practical skills, means of communication in emergency situations, and emotional support to help mothers to continue caregiving at home; and increasing opportunities for discussion to ensure that treatment is acceptable to the entire family. These supports are expected to contribute to reducing the burden on mothers raising children with trisomy 18 requiring medical care at home.</p>
Journal
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- Journal of Japanese Society of Child Health Nursing
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Journal of Japanese Society of Child Health Nursing 33 (0), 123-131, 2024
Japanese Society of Child Health Nursing
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Details 詳細情報について
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- CRID
- 1390862623770804480
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- ISSN
- 24238457
- 13449923
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- Text Lang
- ja
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- Data Source
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- JaLC
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- Abstract License Flag
- Disallowed