利益相关者的观点、需求以及罹患慢性疾病的肢体残疾人自我管理的障碍:焦点小组研究。

Eric Evans, Ayse Zengul, Amy Knight, Amanda Willig, Andrea Cherrington, Tapan Mehta, Mohanraj Thirumalai
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引用次数: 0

摘要

背景:虽然自我管理计划对慢性病患者有显著的改善作用,但人们对自我管理计划对患有慢性病的肢体残疾人的影响却知之甚少,因为目前还没有针对这一人群的全面的自我管理计划。同样,人们对其他利益相关者(如护理人员、健康专家和研究人员)如何在残疾、慢性疾病和辅助技术的背景下看待自我管理项目也知之甚少:本研究旨在深入了解利益相关者如何看待与身体残疾、慢性病和辅助技术相关的自我管理:由两名经过培训的主持人使用半结构化访谈指南进行了九次焦点小组讨论。每份指南都包含与利益相关者的经历、自我管理计划面临的挑战以及对辅助技术的看法有关的问题。对焦点小组进行了录音和转录。对焦点小组的数据进行了主题分析:共有 47 人参加了焦点小组。通过采用建构主义基础方法和归纳式数据收集,焦点小组得出了三大主题:(1) 利益相关者的观点、(2) 需求和 (3) 障碍。利益相关者强调了体育锻炼、心理健康、症状管理、药物管理、以参与者为中心以及慢性病和残疾教育的重要性。参与者认为技术是日常自我管理的有益辅助工具,并表示希望在基于网络的自我管理计划中获得同伴间的支持。他们对技术的其他看法还包括:能够获取个性化的教育内容,并与其他有类似健康状况或在照顾他人方面有困难的人建立联系:研究结果表明,在开发任何基于网络的自我管理项目时,除了体育锻炼内容和症状管理外,还应包括心理健康教育和资源,并且要具有成本效益。除了包含教育资源外,利益相关者还希望程序能够定制化或以患者为中心,以满足肢体残疾人和照顾者的整体需求。网络自我管理项目的开发应全面满足所有利益相关者的需求:ClinicalTrials.gov NCT05481593; https://clinicaltrials.gov/study/NCT05481593.
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Stakeholders' Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group Study.

Background: While self-management programs have had significant improvements for individuals with chronic conditions, less is known about the impact of self-management programs for individuals with physical disabilities who experience chronic conditions, as no holistic self-management programs exist for this population. Similarly, there is limited knowledge of how other stakeholders, such as caregivers, health experts, and researchers, view self-management programs in the context of disability, chronic health conditions, and assistive technologies.

Objective: This study aimed to obtain insight into how stakeholders perceive self-management relating to physical disability, chronic conditions, and assistive technologies.

Methods: Nine focus groups were conducted by 2 trained facilitators using semistructured interview guides. Each guide contained questions relating to stakeholders' experiences, challenges with self-management programs, and perceptions of assistive technologies. Focus groups were audio recorded and transcribed. Thematic analysis was conducted on the focus group data.

Results: A total of 47 individuals participated in the focus groups. By using a constructivist grounded approach and inductive data collection, three main themes emerged from the focus groups: (1) perspectives, (2) needs, and (3) barriers of stakeholders. Stakeholders emphasized the importance of physical activity, mental health, symptom management, medication management, participant centeredness, and chronic disease and disability education. Participants viewed technology as a beneficial aide to their daily self-management and expressed their desire to have peer-to-peer support in web-based self-management programs. Additional views of technology included the ability to access individualized, educational content and connect with other individuals who experience similar health conditions or struggle with caregiving duties.

Conclusions: The findings suggest that the development of any web-based self-management program should include mental health education and resources in addition to physical activity content and symptom management and be cost-effective. Beyond the inclusion of educational resources, stakeholders desired customization or patient centeredness in the program to meet the overall needs of individuals with physical disabilities and caregivers. The development of web-based self-management programs should be holistic in meeting the needs of all stakeholders.

Trial registration: ClinicalTrials.gov NCT05481593; https://clinicaltrials.gov/study/NCT05481593.

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来源期刊
CiteScore
4.20
自引率
0.00%
发文量
31
审稿时长
12 weeks
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