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患者和非正式照护者为主导:一项定性研究,探讨了患者、非正式照护者和医疗保健专业人员在参与治疗、电子健康和自我管理计划方面的经验。

Patients and informal caregivers in the lead: a qualitative study on the experiences of patients, informal caregivers, and healthcare professionals with involvement in treatment, e-health and self-management programs.

机构信息

Care and Public Health Research Institute (CAPHRI; department of Family Medicine), Maastricht University, Maastricht, The Netherlands.

School of Health Professions Education (SHE), Maastricht University, Maastricht, The Netherlands.

出版信息

BMC Health Serv Res. 2024 Jun 10;24(1):713. doi: 10.1186/s12913-024-11156-z.


DOI:10.1186/s12913-024-11156-z
PMID:38858686
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11165740/
Abstract

BACKGROUND: A significant proportion of patients and informal caregivers favor an active role in decisions concerning their health. Simultaneously, governments aim to shift treatment from a professional care setting to a community setting, in light of an ageing population, a decreasing number of health workers and allocation of scarce resources. This transition of care solicits patients' and informal caregivers' ability to self-manage. Therefore, the Maastricht University Medical Centre + has established the Academy for Patients and Informal caregivers. The aim is to proactively and professionally support patients and their informal caregivers to enhance their self-management. For that, the Academy offers activities in three categories: (1) instruction of nursing techniques, (2) training of e-health competencies and (3) the provision of self-management programs. Both patients with an episodic care need, as well as patients and informal caregivers with chronic illness, are eligible to participate in the Academy's activities. However, little is known about the experience of these interventions from the perspective of patients, informal caregivers and healthcare professionals. METHODS: We conducted semi-structured interviews with 15 patients, 8 informal caregivers and 19 health care professionals who either participated in, referred to or received patients from the Academy. Topics revolved around self-management and the Quadruple aim, covering topics such as patient experiences, healthcare costs, health and well-being of the population and improving work life for health professionals. Data were analyzed using thematic analysis. RESULTS: Patients and caregivers experienced an increase in the ability to manage health needs independently, leading to increased mental well-being and self-efficacy. They felt recognized as partners in care, although managing illness needs came with its own burdens. Health care professionals indicated that they felt assured of the quality, uniformity and availability of activities due to its central organization, with instruction nurses finding greater meaning in their work. On the level of health care systems, participants in this study mentioned a decrease in use of formal healthcare, whilst enabling a more equitable division of care. CONCLUSION: Stakeholders' experiences with the Academy for Patients and Informal caregivers indicate that participation contributes to development of self-management, whilst also improving working conditions, reducing the appeal to formal care and advancing equity in healthcare. The burden for patients and informal caregivers is to be considered in future developments.

摘要

背景:相当一部分患者和非正式照护者希望在涉及自身健康的决策中发挥积极作用。与此同时,鉴于人口老龄化、卫生工作者人数减少以及稀缺资源配置,各国政府旨在将治疗从专业护理环境转移到社区环境。这种护理的转变需要患者和非正式照护者具备自我管理的能力。因此,马斯特里赫特大学医学中心+成立了患者和非正式照护者学院。其目的是积极、专业地支持患者及其非正式照护者,以增强他们的自我管理能力。为此,该学院提供了三类活动:(1)护理技术指导,(2)电子健康技能培训,(3)自我管理计划。有短期护理需求的患者以及患有慢性病的患者和非正式照护者都有资格参加该学院的活动。然而,从患者、非正式照护者和医疗保健专业人员的角度来看,这些干预措施的经验知之甚少。

方法:我们对半结构式访谈的 15 名患者、8 名非正式照护者和 19 名医疗保健专业人员进行了访谈,他们要么参与了该学院的活动,要么将患者转介到该学院,要么从该学院接收了患者。访谈主题围绕自我管理和四重目标展开,涵盖了患者体验、医疗保健成本、人口健康和福祉以及改善医疗保健专业人员工作生活等话题。我们使用主题分析法对数据进行了分析。

结果:患者和照护者表示,他们管理健康需求的能力有所提高,从而提高了心理健康和自我效能感。他们感到自己被视为护理伙伴,但管理疾病需求也带来了自身的负担。医疗保健专业人员表示,由于其集中组织,他们对活动的质量、一致性和可用性感到放心,指导护士在工作中找到了更大的意义。在医疗保健系统层面,本研究的参与者提到了对正式医疗保健的使用减少,同时实现了更公平的护理分配。

结论:利益相关者对患者和非正式照护者学院的经验表明,参与有助于自我管理的发展,同时改善工作条件,减少对正式护理的需求,并促进医疗保健的公平性。未来的发展还需要考虑患者和非正式照护者的负担。

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Exploring patients' and relatives' needs and perceptions regarding family participation in essential care in the intensive care unit: A qualitative study.

Intensive Crit Care Nurs. 2023-12

[2]
Feasibility of a standardized family participation programme in the intensive care unit: A pilot survey study.

Nurs Open. 2023-6

[3]
The Quintuple Aim for Health Care Improvement: A New Imperative to Advance Health Equity.

JAMA. 2022-2-8

[4]
The experiences of family caregivers who participated in a family involvement program after cancer surgery: A qualitative study.

Eur J Oncol Nurs. 2020-12

[5]
Thematic analysis of qualitative data: AMEE Guide No. 131.

Med Teach. 2020-8

[6]
Developing an evidence-based and theory informed intervention to involve families in patients care after surgery: A quality improvement project.

Int J Nurs Sci. 2019-9-12

[7]
Interventions for increasing the use of shared decision making by healthcare professionals.

Cochrane Database Syst Rev. 2018-7-19

[8]
Effectiveness of a multicomponent self-management intervention for adults with epilepsy (ZMILE study): A randomized controlled trial.

Epilepsy Behav. 2018-2-12

[9]
Effects of self-management support programmes on activities of daily living of older adults: A systematic review.

Int J Nurs Stud. 2016-9

[10]
A metasynthesis of factors affecting self-management of chronic illness.

J Adv Nurs. 2016-7

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