Experiences of Patients and Families Living with Krabbe Disease
The challenges faced by patients with Krabbe disease remain unelucidated. This study aimed to identify these challenges and facilitate the development of methods for assessing the quality of life. This qualitative descriptive study used in-person or online semistructured interviews from March to Dec...
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| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2025-01-01
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| Series: | Journal of Patient Experience |
| Online Access: | https://doi.org/10.1177/23743735241309470 |
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| _version_ | 1850279112947531776 |
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| author | Yuta Koto PhD Wakana Yamashita MSN Kumiko Kitamura MSN Norio Sakai PhD |
| author_facet | Yuta Koto PhD Wakana Yamashita MSN Kumiko Kitamura MSN Norio Sakai PhD |
| author_sort | Yuta Koto PhD |
| collection | DOAJ |
| description | The challenges faced by patients with Krabbe disease remain unelucidated. This study aimed to identify these challenges and facilitate the development of methods for assessing the quality of life. This qualitative descriptive study used in-person or online semistructured interviews from March to December 2022 using a qualitative content analysis approach. Data were collected from one patient each for the late infantile, juvenile, and adult types of Krabbe disease. In total, 249 codes were extracted from the verbatim transcripts and integrated into 40 subcategories and eight categories. The categories were integrated into three themes: the impact of symptoms on daily life, challenges for healthcare systems, and challenges faced by family members. Patients experienced physical symptoms, social life challenges, and medical care difficulties. Additionally, families felt burdened caring for these patients. In conclusion, support systems for patients and their families during treatment and in their living environments should be developed to aid in managing these challenges. Moreover, a comprehensive scale that accurately reflects the social challenges faced by these patients and their families is needed. |
| format | Article |
| id | doaj-art-e9b56304879342bd8a2246757d5282f5 |
| institution | OA Journals |
| issn | 2374-3743 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Journal of Patient Experience |
| spelling | doaj-art-e9b56304879342bd8a2246757d5282f52025-08-20T01:49:12ZengSAGE PublishingJournal of Patient Experience2374-37432025-01-011210.1177/23743735241309470Experiences of Patients and Families Living with Krabbe DiseaseYuta Koto PhD0Wakana Yamashita MSN1Kumiko Kitamura MSN2Norio Sakai PhD3 Faculty of Nursing, Graduate School of Nursing, , Hirakata, Japan Department of Clinical Genomics, , Irumagun, Japan Division of Health Science, Child Healthcare and Genetic Science Laboratory, , Suita, Japan Division of Health Science, Child Healthcare and Genetic Science Laboratory, , Suita, JapanThe challenges faced by patients with Krabbe disease remain unelucidated. This study aimed to identify these challenges and facilitate the development of methods for assessing the quality of life. This qualitative descriptive study used in-person or online semistructured interviews from March to December 2022 using a qualitative content analysis approach. Data were collected from one patient each for the late infantile, juvenile, and adult types of Krabbe disease. In total, 249 codes were extracted from the verbatim transcripts and integrated into 40 subcategories and eight categories. The categories were integrated into three themes: the impact of symptoms on daily life, challenges for healthcare systems, and challenges faced by family members. Patients experienced physical symptoms, social life challenges, and medical care difficulties. Additionally, families felt burdened caring for these patients. In conclusion, support systems for patients and their families during treatment and in their living environments should be developed to aid in managing these challenges. Moreover, a comprehensive scale that accurately reflects the social challenges faced by these patients and their families is needed.https://doi.org/10.1177/23743735241309470 |
| spellingShingle | Yuta Koto PhD Wakana Yamashita MSN Kumiko Kitamura MSN Norio Sakai PhD Experiences of Patients and Families Living with Krabbe Disease Journal of Patient Experience |
| title | Experiences of Patients and Families Living with Krabbe Disease |
| title_full | Experiences of Patients and Families Living with Krabbe Disease |
| title_fullStr | Experiences of Patients and Families Living with Krabbe Disease |
| title_full_unstemmed | Experiences of Patients and Families Living with Krabbe Disease |
| title_short | Experiences of Patients and Families Living with Krabbe Disease |
| title_sort | experiences of patients and families living with krabbe disease |
| url | https://doi.org/10.1177/23743735241309470 |
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