■健康和社会护理服务使用者和护理人员承担的工作量,他们做这项工作的能力很重要。它可能在塑造卫生服务提供和组织创新的实施方面发挥关键作用;服务的利用率和满意度;以及护理的结果。以前的研究通常集中在狭窄范围的长期条件的经验,以及影响坚持自我保健制度的因素。
■为了得出服务重新设计的政策和实践含义,这一证据综合将扩展我们对服务使用者和照顾者工作量和能力的理解,通过比较它们在三种疾病轨迹的生活经历的定性研究中如何揭示:与显著残疾相关的长期状况(帕金森病,精神分裂症);严重复发缓解疾病(炎症性肠病,双相情感障碍);和快速进展的急性疾病(脑癌,早发性痴呆)。
■我们将回顾和综合参与健康和社会护理的生活经验的定性研究,这些经验是由经历过的治疗负担之间的相互作用形成的。社会不平等和疾病轨迹。审查将涉及:1。构建理论知情的编码手册;系统搜索书目数据库,以识别,筛选和质量评估全文论文。2.使用手工编码技术分析论文,和文本挖掘软件;构建服务用户和护理人员工作和能力的分类法。3.设计核心组件模型并识别不同条件下的共同因素,轨迹,和上下文。4.与从业者合作,以及患者和公众参与(PPI)小组,探索所产生模型的有效性;制定减少工作量的策略;并考虑以人为本的服务设计。
■我们将推广减少工作量的模式,以支持服务用户和护理人员,并为从业人员编写政策简介和同行评审出版物,决策者,和研究人员。
我们的疾病经历往往很复杂。我们可能也必须努力工作。我们可能需要监测和记录症状:采取不同的饮食和体力活动;使用不同的药物和医疗设备;发展使用网站和信息技术的专业知识;协调健康和护理服务的投入;有时我们必须弄清楚如何支付我们需要的服务。我们如何完成这项工作受到我们能力的影响,这是由个人和更广泛的资源决定的,我们可以借鉴。所有这些也受到我们提供的服务的影响,我们生活中的机会是由收入决定的,种族,教育,性别,和年龄。我们患有的疾病种类以及它们是如何发展的,意味着这些因素随着时间的推移而变化。我们称这些变化为轨迹。为了更好地了解服务用户的工作和能力,我们将回顾已发表的研究,这些研究告诉我们人们每天患病的经历。我们专注于三个很少研究的轨迹。这些是与严重残疾相关的长期病症;严重复发缓解疾病;和快速进展的急性疾病。我们将首先使用现有的研究来建立一个框架,在该框架中我们可以描述和理解已发表研究的相关方面。我们将使用此框架从研究中提取相关信息。这将使我们能够在不同条件下建立服务用户工作和容量的共同特征模型,他们的轨迹,服务组织和交付,以及社会和经济劣势的模式。最后,我们将与服务用户和护理人员团体合作,并与健康和社会护理专业人员一起,将该模型应用于制定战略,以减少工作量并改善为有复杂健康问题的人提供的服务设计。
UNASSIGNED: The workload health and social care service users and caregivers take on, and their capacity to do this work is important. It may play a key part in shaping the implementation of innovations in health service delivery and organisation; the utilisation and satisfaction with services; and the outcomes of care. Previous research has often focused on experiences of a narrow range of long-term conditions, and on factors that shape adherence to self-care regimes.
UNASSIGNED: With the aim of deriving policy and practice implications for service redesign, this evidence synthesis will extend our understanding of service user and caregiver workload and capacity by comparing how they are revealed in qualitative studies of lived experience of three kinds of illness trajectories: long-term conditions associated with significant disability (Parkinson\'s disease, schizophrenia); serious relapsing remitting disease (Inflammatory Bowel Disease, bipolar disorder); and rapidly progressing acute disease (brain cancer, early onset dementia).
UNASSIGNED: We will review and synthesise qualitative studies of lived experience of participation in health and social care that are shaped by interactions between experienced treatment burdens, social inequalities and illness trajectories. The review will involve: 1. Construction of a theory-informed coding manual; systematic search of bibliographic databases to identify, screen and quality assess full-text papers. 2. Analysis of papers using manual coding techniques, and text mining software; construction of taxonomies of service user and caregiver work and capacity. 3. Designing a model of core components and identifying common factors across conditions, trajectories, and contexts. 4. Work with practitioners, and a Patient and Public Involvement (PPI) group, to explore the validity of the models produced; to develop workload reduction strategies; and to consider person-centred service design.
UNASSIGNED: We will promote workload reduction models to support service users and caregivers and produce policy briefs and peer-reviewed publications for practitioners, policy-makers, and researchers.
Our experiences of illness are often complex. We may have to work hard too. We may need to monitor and record symptoms: take up different diets and physical activity; use different drugs and medical devices; develop expertise in using websites and information technology; coordinate input from health and care services; sometimes we have to work out how to pay for the services we need. How we get through this work is affected by our capacity to do it, and that is shaped by personal and wider resources, we can draw on. All of this is also affected by the services that are available to us, and by the ways our chances in life are shaped by income, ethnicity, education, gender, and age. The kinds of illnesses we have and how they progress, mean that these factors change over time. We call these changes trajectories. To better understand service user work and capacity, we will review published studies that tell us about people’s everyday experiences of living with illnesses. We focus on three rarely studied trajectories. These are long-term conditions associated with significant disability; serious relapsing remitting disease; and rapidly progressing acute disease. We will first use existing research to build a framework in which we can describe and understand relevant aspects of the published studies. We will use this framework to extract relevant information from the studies. This will enable us to make a model of common features of service user work and capacity across different conditions, their trajectories, service organisation and delivery, and patterns of social and economic disadvantage. Finally, we will work with groups of service users and caregivers, and with health and social care professionals to apply the model to the development of strategies to reduce workload and improve service design for people with complex health problems.