Actual needs of patients with amyotrophic lateral sclerosis: a qualitative study from Wuhan, China
Abstract Background Amyotrophic Lateral Sclerosis (ALS) is a progressive and fatal neurodegenerative disorder that significantly impacts individuals and families. Previous research on ALS has predominantly focused on its pathophysiology, genetic factors, and potential therapeutic interventions. Whil...
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BMC
2025-02-01
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| Series: | BMC Palliative Care |
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| Online Access: | https://doi.org/10.1186/s12904-025-01684-8 |
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| author | Lijuan Zeng Fen Yang Dandan Xu Jing Zhou Guiyuan Qiao Man Wu Chaoyang Li Yiqing Yu Yufei Qiu Jiali Liu |
| author_facet | Lijuan Zeng Fen Yang Dandan Xu Jing Zhou Guiyuan Qiao Man Wu Chaoyang Li Yiqing Yu Yufei Qiu Jiali Liu |
| author_sort | Lijuan Zeng |
| collection | DOAJ |
| description | Abstract Background Amyotrophic Lateral Sclerosis (ALS) is a progressive and fatal neurodegenerative disorder that significantly impacts individuals and families. Previous research on ALS has predominantly focused on its pathophysiology, genetic factors, and potential therapeutic interventions. While these aspects are essential for understanding and treating the disease, there has been a growing recognition of the importance of studying patients’ actual needs. Understanding these needs is vital for developing patient-centered care models that can enhance the well-being of ALS patients. However, existing studies on patients’ needs are often limited in scope. Many are conducted in Western countries, and the results may not be directly applicable to patients in other cultural and socioeconomic contexts. China, with its large population and diverse cultural, economic, and healthcare landscapes, presents a unique setting for studying ALS patients’ needs. At the same time, traditional Chinese medicine (TCM) practices are deeply ingrained in their healthcare system and may affect the way people with ALS seek treatment and manage their condition. Therefore, these differences may lead to differences in the actual needs of ALS patients in China. In conclusion, this qualitative study on the actual needs of ALS patients in China aims to bridge the gap in the existing research. By exploring these needs, it can provide valuable insights for healthcare providers, policymakers, and researchers, ultimately contributing to the improvement of care and quality of life for ALS patients in China. Method We carried out a qualitative study using an empirical phenomenological approach. Individual in-depth interviews were performed among 22 people with ALS from the motor neuron disease rehabilitation center of a tertiary Chinese medicine hospital in China, and the interview content was analyzed qualitatively. Interview recordings were converted to text content by NVivo 11.0 software and analyzed using Colaizzi’s phenomenological method. Result Three main themes were identified in this study: (1) Demand for healthcare services, (2) Emotional requirements, (3) Functional requirements. In addition, 8 sub-themes were extracted as the actual needs of ALS patients. Conclusion This study is based on the real experience of ALS patients after diagnosis, and a deep understanding of these experiences can explore the actual needs of patients from many aspects and give reasonable advice and help. Given the particularity of the disease and the uncertainty of treatment, patients will have practical needs for relevant medical support, emotional requirements, physical functions, and other aspects during the period of illness, and the corresponding support is an effective measure to reduce the burden on patients. |
| format | Article |
| id | doaj-art-4ae71cf6c25b4d52801fb4b9646b69ae |
| institution | OA Journals |
| issn | 1472-684X |
| language | English |
| publishDate | 2025-02-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj-art-4ae71cf6c25b4d52801fb4b9646b69ae2025-08-20T02:15:11ZengBMCBMC Palliative Care1472-684X2025-02-012411910.1186/s12904-025-01684-8Actual needs of patients with amyotrophic lateral sclerosis: a qualitative study from Wuhan, ChinaLijuan Zeng0Fen Yang1Dandan Xu2Jing Zhou3Guiyuan Qiao4Man Wu5Chaoyang Li6Yiqing Yu7Yufei Qiu8Jiali Liu9School of Nursing, Hubei University of Chinese MedicineSchool of Nursing, Hubei University of Chinese MedicineHubei Shizhen LaboratoryHubei Shizhen LaboratorySchool of Nursing, Hubei University of Chinese MedicineSchool of Nursing, Hubei University of Chinese MedicineSchool of Nursing, Hubei University of Chinese MedicineSchool of Nursing, Hubei University of Chinese MedicineSchool of Nursing, Hubei University of Chinese MedicineSchool of Nursing, Hubei University of Chinese MedicineAbstract Background Amyotrophic Lateral Sclerosis (ALS) is a progressive and fatal neurodegenerative disorder that significantly impacts individuals and families. Previous research on ALS has predominantly focused on its pathophysiology, genetic factors, and potential therapeutic interventions. While these aspects are essential for understanding and treating the disease, there has been a growing recognition of the importance of studying patients’ actual needs. Understanding these needs is vital for developing patient-centered care models that can enhance the well-being of ALS patients. However, existing studies on patients’ needs are often limited in scope. Many are conducted in Western countries, and the results may not be directly applicable to patients in other cultural and socioeconomic contexts. China, with its large population and diverse cultural, economic, and healthcare landscapes, presents a unique setting for studying ALS patients’ needs. At the same time, traditional Chinese medicine (TCM) practices are deeply ingrained in their healthcare system and may affect the way people with ALS seek treatment and manage their condition. Therefore, these differences may lead to differences in the actual needs of ALS patients in China. In conclusion, this qualitative study on the actual needs of ALS patients in China aims to bridge the gap in the existing research. By exploring these needs, it can provide valuable insights for healthcare providers, policymakers, and researchers, ultimately contributing to the improvement of care and quality of life for ALS patients in China. Method We carried out a qualitative study using an empirical phenomenological approach. Individual in-depth interviews were performed among 22 people with ALS from the motor neuron disease rehabilitation center of a tertiary Chinese medicine hospital in China, and the interview content was analyzed qualitatively. Interview recordings were converted to text content by NVivo 11.0 software and analyzed using Colaizzi’s phenomenological method. Result Three main themes were identified in this study: (1) Demand for healthcare services, (2) Emotional requirements, (3) Functional requirements. In addition, 8 sub-themes were extracted as the actual needs of ALS patients. Conclusion This study is based on the real experience of ALS patients after diagnosis, and a deep understanding of these experiences can explore the actual needs of patients from many aspects and give reasonable advice and help. Given the particularity of the disease and the uncertainty of treatment, patients will have practical needs for relevant medical support, emotional requirements, physical functions, and other aspects during the period of illness, and the corresponding support is an effective measure to reduce the burden on patients.https://doi.org/10.1186/s12904-025-01684-8Amyotrophic lateral sclerosisActual needsQualitative studySupportive needs |
| spellingShingle | Lijuan Zeng Fen Yang Dandan Xu Jing Zhou Guiyuan Qiao Man Wu Chaoyang Li Yiqing Yu Yufei Qiu Jiali Liu Actual needs of patients with amyotrophic lateral sclerosis: a qualitative study from Wuhan, China BMC Palliative Care Amyotrophic lateral sclerosis Actual needs Qualitative study Supportive needs |
| title | Actual needs of patients with amyotrophic lateral sclerosis: a qualitative study from Wuhan, China |
| title_full | Actual needs of patients with amyotrophic lateral sclerosis: a qualitative study from Wuhan, China |
| title_fullStr | Actual needs of patients with amyotrophic lateral sclerosis: a qualitative study from Wuhan, China |
| title_full_unstemmed | Actual needs of patients with amyotrophic lateral sclerosis: a qualitative study from Wuhan, China |
| title_short | Actual needs of patients with amyotrophic lateral sclerosis: a qualitative study from Wuhan, China |
| title_sort | actual needs of patients with amyotrophic lateral sclerosis a qualitative study from wuhan china |
| topic | Amyotrophic lateral sclerosis Actual needs Qualitative study Supportive needs |
| url | https://doi.org/10.1186/s12904-025-01684-8 |
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