Experiences and needs of older patients with stroke in China involved in rehabilitation decision-making: a qualitative study

Abstract Background Shared decision-making is recommended for stroke rehabilitation. However, the complexity of the rehabilitation modalities exposes patients to decision-making conflicts, exacerbates their disabilities, and diminishes their quality of life. This study aimed to explore the experienc...

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Main Authors: Zining Guo, Sining Zeng, Keyu Ling, Shufan Chen, Ting Yao, Haihan Li, Ling Xu, Xiaoping Zhu
Format: Article
Language:English
Published: BMC 2024-11-01
Series:BMC Medical Informatics and Decision Making
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Online Access:https://doi.org/10.1186/s12911-024-02735-5
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author Zining Guo
Sining Zeng
Keyu Ling
Shufan Chen
Ting Yao
Haihan Li
Ling Xu
Xiaoping Zhu
author_facet Zining Guo
Sining Zeng
Keyu Ling
Shufan Chen
Ting Yao
Haihan Li
Ling Xu
Xiaoping Zhu
author_sort Zining Guo
collection DOAJ
description Abstract Background Shared decision-making is recommended for stroke rehabilitation. However, the complexity of the rehabilitation modalities exposes patients to decision-making conflicts, exacerbates their disabilities, and diminishes their quality of life. This study aimed to explore the experiences and needs of older patients with stroke in China during rehabilitation decision-making, providing a reference for developing decision-support strategies. Methods A qualitative phenomenological design was used to explore the experiences and needs of older patients with stroke in China. Purposive sampling was used to recruit 31 older Chinese patients with stroke. The participants participated in face-to-face, semi-structured, and in-depth interviews. Data were analyzed using inductive thematic analysis. Results The key themes identified include (1) mixed feelings in shared decision-making, (2) multiple barriers hinder the possibility of participating in shared decision-making, (3) Delegating rehabilitation decisions to surrogates, (4) gaps between reality and expectation, and (5) decision fatigue from lack of continuity in the rehabilitation health care system. Conclusions Older patients with stroke in China have complex rehabilitation decision-making experiences and needs and face multiple obstacles when participating in shared decision-making. They lack an effective shared decision-making support system to assist them. Providing patients with comprehensive support (such as emotional and informational), strengthening the construction of a continuous rehabilitation system, alleviating economic pressure, and promoting patient participation in rehabilitation decision-making are necessary.
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spelling doaj-art-5788dcf4f4f54678b76f93e16207a23c2024-11-10T12:28:35ZengBMCBMC Medical Informatics and Decision Making1472-69472024-11-012411910.1186/s12911-024-02735-5Experiences and needs of older patients with stroke in China involved in rehabilitation decision-making: a qualitative studyZining Guo0Sining Zeng1Keyu Ling2Shufan Chen3Ting Yao4Haihan Li5Ling Xu6Xiaoping Zhu7Department of Nursing, Shanghai Tenth People’s Hospital, Tongji University School of MedicineDepartment of Nursing, Shanghai Tenth People’s Hospital, Tongji University School of MedicineDepartment of Nursing, Shanghai Tenth People’s Hospital, Tongji University School of MedicineDepartment of Nursing, Shanghai Tenth People’s Hospital, Tongji University School of MedicineDepartment of Nursing, Shanghai Tenth People’s Hospital, Tongji University School of MedicineDepartment of Nursing, Shanghai Tenth People’s Hospital, Tongji University School of MedicineDepartment of Nursing, Shanghai Tenth People’s Hospital, Tongji University School of MedicineDepartment of Nursing, Shanghai Tenth People’s Hospital, Tongji University School of MedicineAbstract Background Shared decision-making is recommended for stroke rehabilitation. However, the complexity of the rehabilitation modalities exposes patients to decision-making conflicts, exacerbates their disabilities, and diminishes their quality of life. This study aimed to explore the experiences and needs of older patients with stroke in China during rehabilitation decision-making, providing a reference for developing decision-support strategies. Methods A qualitative phenomenological design was used to explore the experiences and needs of older patients with stroke in China. Purposive sampling was used to recruit 31 older Chinese patients with stroke. The participants participated in face-to-face, semi-structured, and in-depth interviews. Data were analyzed using inductive thematic analysis. Results The key themes identified include (1) mixed feelings in shared decision-making, (2) multiple barriers hinder the possibility of participating in shared decision-making, (3) Delegating rehabilitation decisions to surrogates, (4) gaps between reality and expectation, and (5) decision fatigue from lack of continuity in the rehabilitation health care system. Conclusions Older patients with stroke in China have complex rehabilitation decision-making experiences and needs and face multiple obstacles when participating in shared decision-making. They lack an effective shared decision-making support system to assist them. Providing patients with comprehensive support (such as emotional and informational), strengthening the construction of a continuous rehabilitation system, alleviating economic pressure, and promoting patient participation in rehabilitation decision-making are necessary.https://doi.org/10.1186/s12911-024-02735-5Older patients with strokeShared decision-makingStroke rehabilitationQualitative study
spellingShingle Zining Guo
Sining Zeng
Keyu Ling
Shufan Chen
Ting Yao
Haihan Li
Ling Xu
Xiaoping Zhu
Experiences and needs of older patients with stroke in China involved in rehabilitation decision-making: a qualitative study
BMC Medical Informatics and Decision Making
Older patients with stroke
Shared decision-making
Stroke rehabilitation
Qualitative study
title Experiences and needs of older patients with stroke in China involved in rehabilitation decision-making: a qualitative study
title_full Experiences and needs of older patients with stroke in China involved in rehabilitation decision-making: a qualitative study
title_fullStr Experiences and needs of older patients with stroke in China involved in rehabilitation decision-making: a qualitative study
title_full_unstemmed Experiences and needs of older patients with stroke in China involved in rehabilitation decision-making: a qualitative study
title_short Experiences and needs of older patients with stroke in China involved in rehabilitation decision-making: a qualitative study
title_sort experiences and needs of older patients with stroke in china involved in rehabilitation decision making a qualitative study
topic Older patients with stroke
Shared decision-making
Stroke rehabilitation
Qualitative study
url https://doi.org/10.1186/s12911-024-02735-5
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