“一刀切”不适用：对支气管扩张症患者和医疗保健专业人员自我管理观点的定性研究。
'It's not one size fits all': a qualitative study of patients' and healthcare professionals' views of self-management for bronchiectasis.
机构信息
Faculty of Health, Social Care & Medicine, Edge Hill University, Ormskirk, UK
Respiratory Research Centre, Edge Hill University, Ormskirk, Lancashire, UK.
出版信息
BMJ Open Respir Res. 2021 Mar;8(1). doi: 10.1136/bmjresp-2020-000862.
BACKGROUND
Bronchiectasis is a chronic respiratory condition that impacts significantly on individuals and healthcare services. Self-management is recommended in clinical guidelines for bronchiectasis as an intervention to enable patients to manage their condition, yet there is little evidence to support it.
METHODS
Three face to face focus groups (17 adults with bronchiectasis) were conducted at three National Health Service (NHS) sites in North West England. Additionally, semi-structured telephone interviews were undertaken with 11 healthcare professionals (HCPs), including doctors, nurses and physiotherapists. Thematic analysis identified common themes and occurrences verified by independent audit.
FINDINGS
Four common overarching themes were identified: ; ; and ; subthemes varied. Both groups recognised component interventions. Patients highlighted that self-management enabled them to learn what works and moderate behaviour. Aspects of delivery and structure were important to HCPs but a 'make do' culture was evident. Benefits for both groups included empowering patients. Common barriers for patients were time, mood and lack of access to support which could mitigate engagement with self-management. HCPs identified barriers including patient characteristics and lack of resources. Influencers for patients were peer, carer and psychosocial support, for HCPs influencers were individual patient attributes, including ability and motivation, and HCP characteristics such as knowledge and understanding about bronchiectasis.
SUMMARY
This is the first study to explore patients' and HCPs' views of self-management for bronchiectasis. The need for an individual, flexible and responsive self-management programme specific to bronchiectasis was evident. Personal characteristics of patients and HCPs could affect the uptake and engagement with self-management and HCPs knowledge of the disease is a recognised precursor to effective self-management. The study identified key aspects for consideration during development, delivery and sustainability of self-management programmes and findings suggest that patients' psychosocial and socioeconomic circumstances may affect adoption and activation of self-management behaviours.
背景
支气管扩张症是一种慢性呼吸系统疾病，对个人和医疗保健服务都有重大影响。临床指南建议支气管扩张症患者进行自我管理，将其作为一种干预措施，使患者能够管理自己的病情，但目前几乎没有证据支持这一建议。
方法
在英格兰西北部的三个国家卫生服务（NHS）地点进行了三次面对面焦点小组（17 名支气管扩张症成人患者），此外还对 11 名医疗保健专业人员（HCPs，包括医生、护士和物理治疗师）进行了半结构化电话访谈。主题分析确定了常见的主题和通过独立审计验证的事件。
结果
确定了四个常见的总体主题：自我管理的概念；自我管理的实施；自我管理的障碍；自我管理的益处；子主题有所不同。两个组都认识到了组成干预措施。患者强调自我管理使他们能够了解什么有效并调整行为。HCPs 认为交付和结构的各个方面很重要，但存在“凑合”文化。对两个群体都有益的是赋予患者权力。患者常见的障碍包括时间、情绪和缺乏支持，这可能会影响他们参与自我管理。HCPs 确定的障碍包括患者特征和资源不足。对患者的影响因素包括同伴、照顾者和心理社会支持，对 HCPs 的影响因素包括患者的个体特征，包括能力和动机，以及 HCP 对支气管扩张症的知识和理解。
总结
这是第一项探讨支气管扩张症患者和 HCPs 自我管理观点的研究。需要为支气管扩张症制定个体化、灵活和响应式的自我管理计划。患者和 HCPs 的个人特征可能会影响自我管理的采用和参与，而 HCPs 对疾病的了解是有效自我管理的公认前提。该研究确定了在自我管理计划的开发、交付和可持续性方面需要考虑的关键方面，并表明患者的心理社会和社会经济情况可能会影响自我管理行为的采用和激活。
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