How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study.
How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study.
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DOI：
10.1186/s13023-020-01664-6
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发表时间：
2021-02-10
影响因子：
3.7
通讯作者：
Hunter A
中科院分区：
文献类型：
--
作者：
Simpson A;Bloom L;Fulop NJ;Hudson E;Leeson-Beevers K;Morris S;Ramsay AIG;Sutcliffe AG;Walton H;Hunter A
护理协调被认为是重要的病人与罕见的条件，但研究解决护理协调的影响是有限的。本研究旨在探讨护理协调（或缺乏）对患者和护理人员的影响。在英国对15名患者和护理人员/家长进行了半结构化访谈，代表了一系列罕见疾病（包括未诊断的疾病）。在迭代过程中对转录本进行主题分析。参与者描述了一系列与护理协调有关的经验和观点。出现了关于不协调护理的报告：预约不协调，关键利益相关者之间的沟通无效，患者和护理人员需要协调自己的护理，护理没有协调以满足不同情况下患者不断变化的需求。因此，参与者在获得护理方面经历了额外的负担和障碍/延迟。患者和护理人员所描述的影响，要么归因于不协调的护理，要么因不协调的护理而加剧，包括：对身体健康的影响（包括疲劳）、经济影响（包括收入损失和旅行费用）和心理社会影响（包括学业、工作中断和情感负担）。总体数据强调了灵活护理的重要性，它满足了患者/护理人员整个过程中的个人需求。具体而言，研究参与者建议，可以通过以下方式解决影响：获得专业人员的支持来协调护理，改变诊所和预约的方法（在哪里进行，哪些专业人员/服务可用，以及如何安排），并通过使用技术、护理计划、可访问的联络点和多学科团队合作来改善沟通。本研究为不协调护理的影响提供了进一步的证据；这些可能是复杂的，并受到许多因素的影响。能够改善获得护理的机会并减轻患者和护理人员的时间和负担的协调办法可能特别有益。调查结果应影响未来的服务发展（以及对这种发展的评价）。这将首先通过通知英国的CONCORD研究来实现。
Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients and carers. Semi-structured interviews were conducted with 15 patients and carers/parents in the UK, representing a range of rare conditions (including undiagnosed conditions). Transcripts were analysed thematically in an iterative process. Participants described a range of experiences and views in relation to care coordination. Reports of uncoordinated care emerged: appointments were uncoordinated, communication between key stakeholders was ineffective, patients and carers were required to coordinate their own care, and care was not coordinated to meet the changing needs of patients in different scenarios. As a result, participants experienced an additional burden and barriers/delays to accessing care. The impacts described by patients and carers, either attributed to or exacerbated by uncoordinated care, included: impact on physical health (including fatigue), financial impact (including loss of earnings and travel costs), and psychosocial impact (including disruption to school, work and emotional burden). Overall data highlight the importance of flexible care, which meets individual needs throughout patients’/carers’ journeys. Specifically, study participants suggested that the impacts may be addressed by: having support from a professional to coordinate care, changing the approach of clinics and appointments (where they take place, which professionals/services are available and how they are scheduled), and improving communication through the use of technology, care plans, accessible points of contact and multi-disciplinary team working. This study provides further evidence of impacts of uncoordinated care; these may be complex and influenced by a number of factors. Approaches to coordination which improve access to care and lessen the time and burden placed on patients and carers may be particularly beneficial. Findings should influence future service developments (and the evaluation of such developments). This will be achieved, in the first instance, by informing the CONCORD Study in the UK.
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DOI：
10.1007/978-90-481-9485-8_14
发表时间：
2010-01-01
期刊：
RARE DISEASES EPIDEMIOLOGY
影响因子：
--
作者：
Kole, Anna;Faurisson, Francois
通讯作者：
Faurisson, Francois
影响因子：
1.4
作者：
Lewis, Celine;Skirton, Heather;Jones, Ray
通讯作者：
Jones, Ray
影响因子：
1.9
作者：
Currie, Genevieve;Szabo, Joanna
通讯作者：
Szabo, Joanna
影响因子：
3.7
作者：
Dharssi S;Wong-Rieger D;Harold M;Terry S
通讯作者：
Terry S
DOI：
10.1007/s10488-013-0528-y
发表时间：
2015-09
影响因子：
2.6
作者：
Palinkas, Lawrence A.;Horwitz, Sarah M.;Green, Carla A.;Wisdom, Jennifer P.;Duan, Naihua;Hoagwood, Kimberly
通讯作者：
Hoagwood, Kimberly