Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES Health Expectations Pub Date : 2024-08-31 DOI:10.1111/hex.70011

Nathan Davies, Elizabeth L. Sampson, Jesutofunmi Aworinde, Juliet Gillam, Charlotte Kenten, Kirsten Moore, Bethan Phillips, Catherine Harvey, Janet Anderson, Jane Ward, Catherine J. Evans, Clare Ellis-Smith, EMBED-Care Team

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Abstract

Background

People with dementia have complex palliative care needs that are often unmet, including physical and psycho-social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co-design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes—the EMBED-Care Framework.

Methods

A systematic co-design approach was adopted to develop the EMBED-Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co-design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation.

Results

The Framework was co-designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale-Dementia (IPOS-Dem); 2) alert system of IPOS-Dem scores to highlight unmet needs; 3) IPOS-Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence-informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face-to-face sessions, clinical champions who received additional face-to-face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team.

Conclusions

This is a novel digital palliative dementia care intervention to link holistic assessment with clinical decision support tools that are practical and easy to use but address the complexity of palliative dementia care. The Framework is ready for feasibility testing and pilot studies for people with dementia residing at home or in a care home.

Patient or Public Contribution

We were guided by our Patient and Public Involvement (PPI) group consisting of three people with mild dementia, including younger onset dementia, and seven family carers throughout the project. They supported the overall development of the Framework, including planning of workshops, interpreting findings and testing the framework in our PPI meetings.

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共同设计姑息痴呆症护理框架，以支持整体评估和决策：EMBED-护理框架

背景痴呆症患者有复杂的姑息关怀需求，包括生理和社会心理需求，但这些需求往往得不到满足。必须增强痴呆症患者、家庭照护者和专业人员的能力，以更好地评估和管理照护需求。我们的目标是共同设计一个姑息性痴呆护理框架，通过数字应用程序来支持社区和护理院护理的整体评估和决策制定--EMBED-护理框架。方法采用系统的共同设计方法，分三个阶段开发 EMBED-Care 框架：1）对框架进行分析，综合之前的证据综述、大型常规临床数据以及未满足姑息痴呆护理需求的队列研究中的数据；2）与痴呆患者、家庭照护者以及医疗和社会护理专业人员进行迭代研讨会，共同设计框架的组成部分、应用程序的设计以及实施要求；3）进行用户测试，完善最终的框架和应用程序，并加强临床实践和评估方法的使用。结果该框架是共同设计的，通过 aTouchAway 提供的应用程序进行交付。它由五个主要部分组成：1）使用姑息关怀结果综合量表-痴呆症（IPOS-Dem）对姑息关怀需求进行整体评估；2）IPOS-Dem评分的警报系统，以突出未满足的需求；3）IPOS-Dem评分和警报使执业医师、患者和/或照护者能够共同决策，以支持优先事项的设定和关怀目标的实现；4) 以证据为依据的临床决策支持工具自动与已确定的护理管理需求相联系；以及 5) 为用户提供培训包，其中包括面对面课程、接受额外面对面课程的临床倡导者、动画视频和涵盖主要干预内容的手册，以及研究团队的电子邮件和电话支持。结论这是一项新颖的数字姑息痴呆症护理干预措施，将整体评估与临床决策支持工具联系起来，既实用易用，又能应对姑息痴呆症护理的复杂性。该框架已准备就绪，可为居住在家中或护理院的痴呆症患者进行可行性测试和试点研究。患者或公众的贡献在整个项目过程中，我们得到了患者与公众参与（PPI）小组的指导，该小组由三名轻度痴呆症患者（包括发病较轻的痴呆症患者）和七名家庭照护者组成。他们为该框架的整体开发提供了支持，包括计划研讨会、解释研究结果以及在患者与公众参与会议上对框架进行测试。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.