Stakeholder Consultation to Establish Research Priorities for Specialist Dementia Nursing in the United Kingdom

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2024-10-01 DOI:10.1111/hex.14165

Emma Wolverson, Amy Pepper, Karen Harrison Dening

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引用次数: 0

Abstract

Introduction

In the United Kingdom, there are a growing number of specialist dementia nurses called Admiral Nurses. Admiral Nurses, supported in their professional development and clinical supervision by the charity Dementia UK, work with families affected by dementia using a relationship-centred approach. Given the growing need for this type of support, Dementia UK is committed to research that will expand the evidence base for Admiral Nursing. This article describes a stakeholder consultation to identify research priorities for Admiral Nursing for the next 3 years (2023–2026).

Methods

We adopted a participatory approach using an adapted Nominal Group Technique and priority-setting workshop. All elements of the process were designed in consultation with a steering group comprising a range of stakeholders, including people with dementia, carers, Admiral Nurses, Dementia UK staff and researchers. Stakeholders were identified as those who were likely to be affected by or interested in the emerging research priorities. Nominal groups were held both face-to-face and online. A total of 144 people shared their research priorities. Data generated through each nominal group were thematically analysed and then ranked in order of priority.

Results

Four themes reflecting research priority areas were taken to a priority-setting workshop for consideration. This resulted in three research priorities for Admiral Nursing: (1) people with dementia who live alone and carers who provide support from a distance; (2) people living with young onset and rarer dementia and their families; and (3) people living with multiple health conditions alongside dementia, including mental health problems. Risk, diversity and the effectiveness of Admiral Nursing were strands that ran throughout these themes.

Conclusions

We identified shared research priorities for Admiral Nursing using a rigorous, consensus-driven approach involving key stakeholders. These priorities reflect a desire to ensure that Admiral Nursing services reach the most vulnerable people living with dementia and their families and respond to the widening health and social care inequalities faced by this group.

Patient and Public Contribution

People with dementia and carers were involved in the design of this process as members of our steering group and through consultation on our initial plans with Dementia UK's Lived Experience Advisory Panel (LEAP). People living with dementia and carers also participated in consultation groups to share their views on research priorities. All stakeholders were invited to share feedback on the themes as part of the analysis and interpretation of the priorities, and a meeting was held with LEAP to discuss the emerging priorities.

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为确定英国痴呆症专科护理的研究重点而进行的利益相关者咨询。

导言：在英国，越来越多的痴呆症专科护士被称为 "海军上将护士"（Admiral Nurses）。在英国痴呆症慈善机构的专业发展和临床监督支持下，上将护士采用以关系为中心的方法，为受痴呆症影响的家庭提供服务。鉴于对此类支持的需求日益增长，英国痴呆症协会致力于开展研究，以扩大海军上将护士的证据基础。本文介绍了为确定海军上将护理未来 3 年（2023-2026 年）的研究重点而进行的利益相关者咨询：方法：我们采用了参与式方法，使用了经过改编的 "名义小组技术"（Nominal Group Technique）和优先事项设定研讨会。该过程的所有要素都是在与由痴呆症患者、照护者、海军上将级护士、英国痴呆症协会工作人员和研究人员等利益相关者组成的指导小组协商后设计的。利益相关者是指那些可能受到新出现的研究重点影响或对其感兴趣的人。名义小组以面对面和在线的方式进行了讨论。共有 144 人分享了他们的研究重点。对每个名义小组产生的数据进行了主题分析，然后按照优先顺序进行排序：结果：反映优先研究领域的四个主题被提交给优先事项制定研讨会审议。最终，海军上将护理部确定了三个研究重点：(1) 独居痴呆症患者和提供远程支持的照护者；(2) 年轻痴呆症患者和罕见痴呆症患者及其家人；(3) 在痴呆症的同时患有多种健康问题的患者，包括精神健康问题。风险、多样性和海军上将护理的有效性是贯穿这些主题的主线：我们采用严格的、由主要利益相关者参与的共识驱动方法，确定了海军上将护理的共同研究重点。这些优先事项反映了我们的愿望，即确保 "管理式护理 "服务能够惠及最弱势的痴呆症患者及其家人，并对这一群体所面临的日益扩大的健康和社会护理不平等问题做出回应：患者和公众的贡献：痴呆症患者和照护者作为我们指导小组的成员参与了这一流程的设计，并就我们的初步计划咨询了英国痴呆症协会的生活经验咨询小组（LEAP）。痴呆症患者和照护者还参加了咨询小组，分享他们对研究重点的看法。所有利益相关者都被邀请分享对主题的反馈意见，作为分析和解释优先事项的一部分，我们还与 LEAP 举行了一次会议，讨论新出现的优先事项。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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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.