■功能损失,无法执行必要或期望的任务,是限制生命的疾病和相关症状(疼痛,疲劳,呼吸困难,等。)并给患者和家庭带来痛苦。康复,一系列旨在解决功能丧失的干预措施,在姑息治疗中被认为是必不可少的,因为它可以提高生活质量并降低护理成本。然而,不是每个人都有平等的康复机会。尽管预期寿命有限或受益于干预措施的能力不确定,通常没有姑息康复服务。部分原因是缺乏围绕最佳康复模型的高质量研究。该领域的研究在方法上具有挑战性,需要多学科和跨专业的合作。
■我们的目标是在不同领域建立和发展英国的研究伙伴关系。从爱丁堡的合作伙伴开始,东安格利亚,兰开夏郡,利兹,伦敦和诺丁汉,围绕姑息治疗和临终关怀中的功能丧失和康复这一主题。目标是(1)发展多学科,跨专业研究伙伴关系,(2)与利益相关者产生高优先级的未回答的研究问题,(3)共同设计并提交高质量的竞争性研究提案;包括(4)分享主题和方法专业知识,和(5)建设能力和能力,以提供全国可推广的研究。
与来自英格兰和苏格兰的专业人士建立了合作伙伴关系,他们拥有互补的专业领域,包括复杂的姑息治疗和老年病研究。物理治疗,护理,姑息医学和心理学。研究问题是通过儿童健康和营养研究倡议的修改版本产生的,它允许整理和完善与寿命末期功能丧失和康复有关的研究问题。伙伴关系成员通过一系列讲习班得到支持,将研究想法转化为提交给国家卫生和护理研究所第一阶段呼吁的建议。这种伙伴关系不仅支持学生,有培训机会的临床医生和公众成员,但也支持临床医生从临床职责中获得保护时间,使他们能够专注于制定当地研究计划。
■通过我们的合作伙伴关系,我们建立了一个网络,为研究人员提供,临床医生,学生和公众成员有机会发展新技能,并探索围绕姑息和临终关怀中的功能丧失和康复主题领域的个人和职业发展机会。这种伙伴关系对于促进合作和促进思想交流至关重要,知识和经验,以建立联合研究研究建议。
■本文介绍了由美国国立卫生与护理研究所(NIHR)计划资助的独立研究,奖励编号为NIHR135171。本文的简单语言摘要可在NIHR期刊库网站https://doi.org/10.3310/PTHC7598上找到。
“功能丧失”描述了一个人变得无法完成他们想要或需要做的日常活动。限制生命的疾病及其症状通常会导致功能丧失:这是患者及其家人遭受痛苦的常见原因。康复旨在支持一个人进行受疾病影响的日常活动。这应该是提供良好姑息治疗的重要组成部分。然而,在实践中,不是每个人都有平等的康复机会,这方面缺乏高质量的研究。建立姑息治疗康复伙伴关系是为了开始应对这些挑战。该伙伴关系完成了五个关键领域的活动:建立伙伴关系-汇集了来自不同领域的专家,比如姑息治疗,照顾老年人和研究,改善患有限制生命的疾病的人的康复。生成研究问题-收集和排名研究问题有关功能损失和康复的各种利益相关者,包括患者,确定重点研究领域。制定研究建议-帮助,通过工作坊,将这些研究问题转化为详细的资助建议。这涉及提炼想法,讨论如何最好地进行研究并获得反馈。能力建设-为其成员提供培训机会,包括临床医生,研究人员和患者,提高他们的研究和康复技能。它还为具有临床医生和研究人员双重角色的人提供指导。服务映射-提高了我们对不同医疗保健环境中功能丧失和康复服务的理解。姑息治疗康复伙伴关系在解决患有生命限制疾病的人的功能丧失和康复的复杂问题方面取得了进展。该伙伴关系支持制定至少三项新的研究提案,这些提案将用于申请未来的资金。
UNASSIGNED: Functional loss, the inability to perform necessary or desired tasks, is a common consequence of life-limiting illnesses and associated symptoms (pain, fatigue, breathlessness, etc.) and causes suffering for patients and families. Rehabilitation, a set of interventions designed to address functional loss, is recognised as essential within palliative care, as it can improve quality of life and reduce care costs. However, not everyone has equal access to rehabilitation. Despite limited life expectancy or uncertain ability to benefit from interventions, palliative rehabilitation services are often absent. This is partly due to a lack of high-quality research around optimal models of rehabilitation. Research in this area is methodologically challenging and requires multidisciplinary and cross-speciality collaboration.
UNASSIGNED: We aimed to establish and grow a United Kingdom research partnership across diverse areas, commencing with partners from Edinburgh, East Anglia, Lancashire, Leeds, London and Nottingham, around the topic area of functional loss and rehabilitation in palliative and end-of-life care. The objectives were to (1) develop a multidisciplinary, cross-speciality research partnership, (2) generate high-priority unanswered research questions with stakeholders, (3) co-design and submit high-quality competitive research proposals, including (4) sharing topic and methodological expertise, and (5) to build capacity and capability to deliver nationally generalisable studies.
UNASSIGNED: The partnership was established with professionals from across England and Scotland with complementary areas of expertise including complex palliative and geriatric research, physiotherapy, nursing, palliative medicine and psychology. Research questions were generated through a modified version of the Child Health and Nutrition Research Initiative, which allowed for the collation and refinement of research questions relating to functional loss and rehabilitation towards the end of life. Partnership members were supported through a series of workshops to transform research ideas into proposals for submission to stage one calls by the National Institute for Health and Care Research. The partnership not only supported students, clinicians and public members with training opportunities but also supported clinicians in securing protected time from clinical duties to allow them to focus on developing local research initiatives.
UNASSIGNED: Through our partnership we established a network that offered researchers, clinicians, students and public members the chance to develop novel skills and explore opportunities for personal and professional development around the topic area of functional loss and rehabilitation in palliative and end-of-life care. The partnership was crucial to foster collaboration and facilitate exchange of ideas, knowledge and experiences to build joint research study proposals.
UNASSIGNED: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) programme as award number NIHR135171. A plain language summary of this article is available on the NIHR Journals Library website https://doi.org/10.3310/PTHC7598.
‘Functional loss’ describes a person becoming unable to do the everyday activities they would like or need to do. Life-limiting illnesses and their symptoms can often lead to functional loss: a common source of suffering for patients and their families. Rehabilitation aims to support a person to carry out everyday activities that have been affected by illness. This should be an important part of providing good palliative care. However, in practice, not everyone has equal access to rehabilitation and there is a lack of high-quality research in this area. The Palliative Care Rehabilitation Partnership was created to begin to address these challenges. This partnership completed activities in five key areas: Establishing the partnership – Brought together experts from different fields, like palliative care, care for older people and research, to improve rehabilitation for people with life-limiting illnesses. Generating research questions – Collected and ranked research questions about functional loss and rehabilitation from various stakeholders, including patients, to identify key research areas. Developing research proposals – Helped, through workshops, turn these research questions into detailed proposals for funding. This involved refining ideas, discussing how best to conduct the studies and getting feedback. Building capacity and capability – Provided training opportunities for its members, including clinicians, researchers and patients, to improve their research and rehabilitation skills. It also offered mentorship to people with dual roles as clinicians and researchers. Service mapping – Improved our understanding of services for functional loss and rehabilitation across different healthcare settings. The Palliative Care Rehabilitation Partnership has made gains in addressing the complex issues of functional loss and rehabilitation in people with life-limiting illnesses. The partnership has supported the development of at least three new research proposals that will be used to apply for future funding.