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O-07 ‘Real and lasting change’: becoming an anti-racist hospice O-07“真正而持久的改变”:成为一个反种族主义的收容所
Pub Date : 2023-11-01 DOI: 10.1136/spcare-2023-hunc.7
Patricia Mbasani, Emily Carter

Background

Race inequality is a problem in both society and healthcare, affecting patients and staff in our hospice. In 2020 we committed to actively tackling racism. In 2022, multiple focused staff 1:1s and group conversations found racism was still too prevalent, and dissatisfaction with how incidences of racism were managed.

Aim

To achieve positive change to become an authentically anti-racist organisation by: Understanding and addressing racial bias. Listening, learning and taking action in response to racism. Strengthening accountability.

Process

The ‘Real and Lasting Change’ project was led and owned by the CEO, Board and Executive. They co-designed an action plan with the hospice’s Anti-Racism Action and ED&I groups that was shared internally and externally and updated biannually.

Results

Objectives after six months (April 2023): Complete/ongoing: Promptly investigate allegations of racism by/against patients and staff. Robust messaging/signage outlining unacceptable behaviour. Updated ‘Managing Unacceptable Behaviour’ policy, and staff trained to effectively implement it. Multiple new support and reporting mechanisms for those who experience/have experienced/witness racism. The Board has completed anti-racism training. All policy and decision-making papers include an Equality Impact Assessment. New Board committee focusing on people, culture and anti-racism. Board’s information dashboard now includes data on incidences of racism. Progressing: All staff to complete anti-racism training. Training on inclusive recruitment practices for managers. Personal objective relating to ED&I for all staff. Regular proactive questions about experiences of racism/bullying/discrimination (surveys, focused conversations). Committing to external scrutiny and certification. To commence: Reverse mentoring. Third-party providers must demonstrate inclusive practices.

Conclusion

We are proud to be transparent about this work. We have seen an increase in the proportion of staff from BAME backgrounds in senior positions (<£50k) from 5%-16%. The work will continue in collaboration with staff and be reported on/measured through staff surveys and conversations.
种族不平等是社会和医疗保健中的一个问题,影响着我们临终关怀的病人和工作人员。2020年,我们承诺积极应对种族主义。2022年,多名专注的员工1:1和小组对话发现,种族主义仍然过于普遍,人们对种族主义事件的管理方式感到不满。目标通过以下方式实现积极的改变,成为一个真正的反种族主义组织:理解和解决种族偏见。倾听、学习并采取行动应对种族主义。加强问责制。“真正和持久的变化”项目由首席执行官、董事会和执行人员领导和拥有。他们与临终关怀院的反种族主义行动组织和ed&i小组共同设计了一项行动计划,该计划在内部和外部共享,并每两年更新一次。六个月后(2023年4月)的目标:完成/正在进行:迅速调查患者和工作人员的种族主义指控。强有力的信息/标识列出不可接受的行为。更新“管理不可接受行为”政策,并培训员工有效执行该政策。为那些经历过/目睹过种族主义的人提供多种新的支持和报告机制。委员会已完成反种族主义培训。所有政策和决策文件都包括平等影响评估。新的董事会委员会专注于人、文化和反种族主义。董事会的信息仪表板现在包括种族主义事件的数据。进步:全体员工完成反种族歧视培训。对管理人员进行包容性招聘实践培训。与所有员工有关的个人目标。定期主动询问有关种族主义/欺凌/歧视经历的问题(调查,重点对话)。承诺接受外部审查和认证。开始:反向指导。第三方提供商必须展示包容性实践。我们对这项工作的透明度感到自豪。我们发现,在高级职位(5万英镑)中,来自BAME背景的员工比例从5%增加到16%。这项工作将继续与工作人员合作,并通过工作人员调查和谈话进行报告/衡量。
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引用次数: 0
O-06 Creating a polyphonic strategy for paediatric palliative care. A new organisational direction created through storytelling and artwork O-06为儿科姑息治疗制定复调策略。通过讲故事和艺术创造了一个新的组织方向
Pub Date : 2023-11-01 DOI: 10.1136/spcare-2023-hunc.6
Will McLean

Background

New models of care, developed using child-centred research methods, are required for dying children (Together for Short Lives. A guide to children’s palliative care. 2018, 4th ed). We are creating a new strategic plan to deliver paediatric palliative care, informed by numerous voices through a storytelling approach to engage children.

Aims

To create a ‘polyphonic narrative strategy’ (Weidinger. Polyvocal narrative strategy: Turning many voices into durable change. 2020) – an organisational strategic plan, told through storytelling and visual art (Boje. Storytelling organizations. 2008), embodied by the many voices of the children and families who access our hospice services, and the staff and volunteers who deliver them.

Methods

A project team, including people with lived experience, used Most Significant Change (MSC) (Davies & Dart. The ‘Most Significant Change’ (MSC) technique: a guide to its use. 2005), a participatory story-based approach, and Sentiment Analysis (SA) (Venkateswarlu, Kumaresh & Janardhan. Asian J Computer Sci Tech. 2019; 8(S2); 1–6), a process of identifying the polarity of words, to collect and analyse important meaningful care events, told in stories and art.

Results

Through artwork and stories, 40 children (aged 4–11, 45% referred, 13% bereaved) described a hospice service offering love and happiness – a place where they could live. 56 families (48% bereaved) told stories that revealed tragedy and sadness compounded by significant trauma. Family life is hard when caring for a child expected to die young. When your child dies, life gets even harder. 84 staff and volunteers told stories that directly correlated with those told by families. Families told stories of a constant fight, and staff told stories of the constancy of our care. MSC identified stories that best encapsulated our work which defined the core purpose of the strategy. The analysis identified ‘critical junctures’ where our care is most needed, giving structure and direction to the strategy. SA identified the attitudes of children and families towards our care and word frequencies helped create new organisational values to underpin the strategy and everything we do.

Conclusion

Multiple interpretations of our service coalesced forming the initial stage of our new strategic plan. Next steps will coproduce priorities and objectives based on the ‘critical junctures’ with children and families.
需要使用以儿童为中心的研究方法开发的新的护理模式(Together for Short Lives)。儿童姑息治疗指南。2018,第4版)。我们正在制定一项新的战略计划,以提供儿科姑息治疗,通过讲故事的方式听取众多声音,吸引儿童参与。目的创造一种“复调叙事策略”(魏丁格)。多声音叙事策略:将多种声音转化为持久的变化。2020) -通过讲故事和视觉艺术讲述的组织战略计划(Boje。讲故事的组织。2008年),这体现在使用我们临终关怀服务的儿童和家庭的许多声音,以及提供这些服务的工作人员和志愿者。方法一个项目团队,包括有生活经验的人,使用最显著变化(MSC) (Davies &飞镖。“最显著变化”(MSC)技术:其使用指南。2005),参与式基于故事的方法,以及情绪分析(SA) (Venkateswarlu, Kumaresh &;Janardhan。计算机科学与技术学报。2019;8 (S2);1-6),这是一个识别单词极性的过程,收集和分析重要的有意义的关怀事件,在故事和艺术中讲述。结果40名儿童(年龄4-11岁,45%转介,13%丧亲)透过艺术作品与故事,描述安宁疗护服务提供爱与快乐,是他们可以生活的地方。56个家庭(48%失去亲人)讲述了悲剧和悲伤的故事,这些故事伴随着重大的创伤。在照顾一个可能英年早逝的孩子时,家庭生活是很艰难的。当你的孩子死了,生活变得更加艰难。84名工作人员和志愿者讲述了与家人讲述的故事直接相关的故事。家属们讲述了他们不断战斗的故事,工作人员讲述了我们始终如一的关怀。MSC确定了最能概括我们工作的故事,这些故事定义了战略的核心目的。该分析确定了最需要我们护理的“关键时刻”,为该战略提供了结构和方向。助理助理确定了儿童和家庭对我们的照顾和用词频率的态度,帮助创造了新的组织价值观,以支持我们的战略和我们所做的一切。结论:对我们服务的多种解释形成了我们新战略计划的初始阶段。接下来的步骤将根据儿童和家庭的“关键时刻”共同制定优先事项和目标。
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引用次数: 0
O-22 The initial impact of a joint lung and enhanced supportive care clinic on patient outcomes at a cancer centre 在癌症中心,联合肺和增强支持性护理门诊对患者预后的初步影响
Pub Date : 2023-11-01 DOI: 10.1136/spcare-2023-hunc.22
Alexandra Mcdougall, Carles Escriu, Matthew Howell, Jonathan Heseltine, Tim Cook, Sarah Rose, June Holmes, Helen Wong, Daniel Monnery

Background

Enhanced Supportive Care (ESC) promotes the earlier implementation of supportive care within cancer care (Bakitas, Tosteson, Li, et al. J Clin Oncol. 2015;33(13):1438–1445; Bandieri, Banchelli, Artioli, et al. BMJ Support Palliat Care. 2020;10(4):e32; Monnery, Benson, Griffiths, et al. Int J Palliat Nurs. 2018; 24(10):510–514). Integration of care between Oncology and Palliative Care can improve patient outcomes and is increasingly recommended (Benson, Wong, Olsson-Brown, et al. Int J Palliat Nurs. 2023; 29(3):129–136; Monnery, Tredgett, Hooper, et al. Clin Oncol. 2023; 35(6):395–403). The Clatterbridge Cancer Centre has introduced an integrated ESC model within the mutation driven non-small cell lung cancer (NSCLC) clinic. This is a collaborative clinic between the Oncology and Palliative Care teams.

Aims

To evaluate an integrated ESC model within lung cancer care. To assess the impact on patient outcomes and identify patient needs.

Methods

38 patients with NSCLC were supported by integrated ESC delivery in the first six months of the clinic. These patients had an IPOS score completed at initial review and at follow up. Data was collected retrospectively. This was used to assess longitudinal changes in Integrated Palliative Care Outcome Scale (IPOS) scores as indicators of quality of life (Cicely Saunders Institute. Integrated Palliative Care Outcome Score. 2012; Basch, Deal, Dueck, et al. JAMA. 2017; 318(2):197–198). A retrospective case control analysis was used to review other outcomes.

Results

Patients seen by the ESC team experienced less severe symptoms over time. There were statistically significant improvements seen in dyspnoea, pain and the information needs of patients who were seen in the joint clinic.

Conclusion

An integrated ESC model can be effective in improving outcomes for patients with NSCLC. This is a developing service and continued data collection will allow the ongoing impact on patient outcomes to be assessed.
背景:加强支持性护理(ESC)促进了支持性护理在癌症治疗中的早期实施(Bakitas, tosteeson, Li等)。中华临床医学杂志;2015;33(13):1438-1445;Bandieri, Banchelli, Artioli等。中国生物医学工程杂志;2010;10(4):532;Monnery, Benson, Griffiths等。国际护理杂志2018;24(10): 510 - 514)。肿瘤学和姑息治疗之间的整合治疗可以改善患者的预后,并且越来越多地被推荐(Benson, Wong, Olsson-Brown等)。国际护理学杂志。2023;29 (3): 129 - 136;Monnery, Tredgett, Hooper等人。中华医学杂志;2023;35(6): 395 - 403)。claterbridge癌症中心在突变驱动的非小细胞肺癌(NSCLC)诊所引入了一个集成的ESC模型。这是肿瘤科和姑息治疗组的合作诊所。目的评价ESC在肺癌治疗中的综合模式。评估对患者预后的影响并确定患者的需求。方法38例非小细胞肺癌患者在临床前6个月接受ESC综合输送。这些患者在初次复查和随访时完成了IPOS评分。回顾性收集资料。这是用来评估综合姑息治疗结果量表(IPOS)得分作为生活质量指标的纵向变化(Cicely Saunders研究所)。综合姑息治疗结果评分。2012;Basch, Deal, Dueck等人。《美国医学协会杂志》上。2017;318(2): 197 - 198)。回顾性病例对照分析用于评估其他结果。结果ESC小组观察的患者随着时间的推移症状较轻。在关节诊所就诊的患者在呼吸困难、疼痛和信息需求方面有统计学上的显著改善。结论综合ESC模型可有效改善非小细胞肺癌患者预后。这是一项发展中的服务,持续的数据收集将允许评估对患者预后的持续影响。
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引用次数: 0
O-01 Identify unanswered questions for palliative and end of life care research – a James Lind alliance priority setting partnership refresh project O-01确定姑息治疗和临终关怀研究中未解决的问题——詹姆斯·林德联盟优先确定伙伴关系更新项目
Pub Date : 2023-11-01 DOI: 10.1136/spcare-2023-hunc.1
Briony Hudson, Isabelle Olson, Jessica Bush, Phillipa Ashcroft, Noura Rizk, Louise Dunford, Angela McCullagh, Sabine Best

Background

In 2015, Marie Curie and partners reported the results of the Palliative and end of life care Priority Setting Partnership (PeolcPSP) with the James Lind Alliance (JLA) that identified the top 10 unanswered research questions in palliative and end of life care. Prioritised questions were mapped onto funded research (Fordham, Candy, McMillan, et al. Health Open Res. 2020; 2(17): 17) and have been influential in the field of palliative and end of life care research, informing strategic funding opportunities for palliative and end of life care research in the UK, and also providing insights into public opinions of palliative and end of life care (Nelson. Health Open Res. 2020; 2(15):15).

Aims

To undertake a refresh of the Palliative and end of life care Priority Setting Partnership to identify current priorities for palliative and end of life care research, in partnership with the JLA and other organisations.

Methods

Sequential surveys open to members of the public and health and social care professionals to elicit potential research questions. A range of approaches will be used to try and reach a diverse sample. Identified questions will be checked against existing research and prioritised. The final priorities will be identified through a workshop attended by people affected by dying, death and bereavement and health and social care professionals. A group of people with lived experience has been set up to inform the project across all stages.

Results

Interim findings from the first survey will be shared, including emerging topics and characteristics of the sample recruited to date.

Conclusions

This work will explore, from the perspectives of people affected by dying and bereavement and health and social care professionals, what the current priorities for palliative and end of life care should be. This will provide vital insights to inform the direction of future research and ensure that research is shaped by the voices of those it is intended to benefit.
2015年,居里夫人及其合作伙伴报告了与詹姆斯·林德联盟(JLA)合作的姑息治疗和临终关怀优先设置伙伴关系(PeolcPSP)的结果,确定了姑息治疗和临终关怀中十大未解决的研究问题。优先问题被映射到资助的研究(Fordham, Candy, McMillan, et al.)。2020年卫生开放日;2(17): 17),在姑息治疗和临终关怀研究领域具有影响力,为英国的姑息治疗和临终关怀研究提供了战略资助机会,并提供了对姑息治疗和临终关怀的公众意见的见解(Nelson。2020年卫生开放日;2(15): 15)。目的与JLA和其他组织合作,对姑息治疗和临终关怀优先设置伙伴关系进行更新,以确定当前姑息治疗和临终关怀研究的优先事项。方法对公众、卫生和社会保健专业人员进行顺序调查,以引出潜在的研究问题。将使用一系列方法来尝试获得不同的样本。确定的问题将根据现有研究进行检查并确定优先级。最后的优先事项将通过一个讲习班确定,讲习班由濒死、死亡和丧失亲人的人以及保健和社会护理专业人员参加。一群有生活经验的人已经成立,在项目的各个阶段提供信息。将分享第一次调查的中期结果,包括新出现的主题和迄今为止招募的样本的特征。这项工作将从受死亡和丧亲之痛影响的人以及卫生和社会护理专业人员的角度探讨当前姑息治疗和临终关怀的优先事项。这将提供重要的见解,为未来的研究方向提供信息,并确保研究是由那些想要受益的人的声音塑造的。
{"title":"O-01 Identify unanswered questions for palliative and end of life care research – a James Lind alliance priority setting partnership refresh project","authors":"Briony Hudson, Isabelle Olson, Jessica Bush, Phillipa Ashcroft, Noura Rizk, Louise Dunford, Angela McCullagh, Sabine Best","doi":"10.1136/spcare-2023-hunc.1","DOIUrl":"https://doi.org/10.1136/spcare-2023-hunc.1","url":null,"abstract":"<h3>Background</h3> In 2015, Marie Curie and partners reported the results of the Palliative and end of life care Priority Setting Partnership (PeolcPSP) with the James Lind Alliance (JLA) that identified the top 10 unanswered research questions in palliative and end of life care. Prioritised questions were mapped onto funded research (Fordham, Candy, McMillan, et al. Health Open Res. 2020; 2(17): 17) and have been influential in the field of palliative and end of life care research, informing strategic funding opportunities for palliative and end of life care research in the UK, and also providing insights into public opinions of palliative and end of life care (Nelson. Health Open Res. 2020; 2(15):15). <h3>Aims</h3> To undertake a refresh of the Palliative and end of life care Priority Setting Partnership to identify current priorities for palliative and end of life care research, in partnership with the JLA and other organisations. <h3>Methods</h3> Sequential surveys open to members of the public and health and social care professionals to elicit potential research questions. A range of approaches will be used to try and reach a diverse sample. Identified questions will be checked against existing research and prioritised. The final priorities will be identified through a workshop attended by people affected by dying, death and bereavement and health and social care professionals. A group of people with lived experience has been set up to inform the project across all stages. <h3>Results</h3> Interim findings from the first survey will be shared, including emerging topics and characteristics of the sample recruited to date. <h3>Conclusions</h3> This work will explore, from the perspectives of people affected by dying and bereavement and health and social care professionals, what the current priorities for palliative and end of life care should be. This will provide vital insights to inform the direction of future research and ensure that research is shaped by the voices of those it is intended to benefit.","PeriodicalId":19619,"journal":{"name":"Oral Presentations - Late-Breaking Proffered Abstracts","volume":"42 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135327047","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
O-03 Uncovering the everyday experiences and emotional engagements of clinical and non-clinical hospice staff O-03揭示临床和非临床安宁疗护人员的日常经验和情感投入
Pub Date : 2023-11-01 DOI: 10.1136/spcare-2023-hunc.3
Natalie Richardson

Appreciating the everyday experiences of hospice staff can help to illuminate their emotional engagements and needs for emotional support. Existing research on emotional work in healthcare and hospice contexts tends to focus on clinical staff, such as doctors and nurses. This study adopted an ethnographic approach to uncover the day-to-day working lives of both clinical and non-clinical hospice staff. In doing so, the findings appreciate the subtle, sensory and intimate practices of hospice staff. The study involved 6 months of observations and 18 in-depth interviews in a hospice situated in the North of England. Since then, consultation work has also been carried out to consult with staff on the findings and develop recommendations for the emotional support of hospice staff in various roles. This paper will draw on quotes and fieldnotes to illuminate the everyday work of hospice staff. The findings appreciate the small practices, such as silence, touch and the preparation of food, to highlight how such acts are less acknowledged, yet significant, forms of care in the hospice context. In appreciating such practices as forms of care, we are also able to acknowledge the non-clinical staff that provide care in the hospice context. The paper will also draw on consultation work completed during 2023, to bring the voices of hospice staff to the forefront. The consultation work has demonstrated the need to acknowledge and support non-clinical staff in their engagements and emotional interactions with patients and families. Overall, this research and consultation work with hospice staff shows a continued need for emotional support and the acknowledgement of the significance of emotional work – in the roles of all hospice staff.
欣赏安宁疗护人员的日常经历,可以帮助了解他们的情感投入和对情感支持的需求。现有的关于医疗保健和临终关怀环境下情绪工作的研究往往集中在临床工作人员,如医生和护士。本研究采用人种志方法来揭示临床与非临床安宁疗护人员的日常工作生活。在这样做的过程中,研究结果欣赏了临终关怀工作人员的微妙、感官和亲密的做法。这项研究在英格兰北部的一家临终关怀医院进行了6个月的观察和18次深入访谈。从那时起,我们也开展了咨询工作,就调查结果与工作人员进行磋商,并就不同角色的安宁疗护工作人员的情感支持提出建议。本文将引用引文和现场笔记来阐明安宁疗护人员的日常工作。研究结果赞赏小的做法,如沉默,触摸和准备食物,强调这些行为是如何不被认可的,但重要的是,在临终关怀环境中的护理形式。在欣赏这种护理形式的实践中,我们也能够承认在临终关怀环境中提供护理的非临床工作人员。该文件还将借鉴2023年期间完成的咨询工作,将临终关怀工作人员的声音放在首位。咨询工作表明,有必要承认和支持非临床工作人员与患者和家属的接触和情感互动。总体而言,这项与安宁疗护人员的研究和咨询工作显示出对情绪支持的持续需求,以及对所有安宁疗护人员角色中情绪工作重要性的认可。
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引用次数: 0
O-17 Powerful when fragile: how people with lived experience of bereavement are changing bereavement support for everyone 脆弱时强大:有丧亲经历的人如何改变对每个人的丧亲支持
Pub Date : 2023-11-01 DOI: 10.1136/spcare-2023-hunc.17
Mary Hodgson, Jan Noble

Background

Lived experience is a powerful source of knowledge and action in society, giving its holder insight, knowledge and perspective, and often the motivation to change things or to help others. This experience can also be important in bridging a gap or redistributing power in designing new services and modelling new ways of working which work for people, and pay attention to the knowledge and strengths they have.

Aims

This presentation will explore a co-production exercise in St Christopher’s Hospice using community action methods with people with bereavement experience. We will review some of the outcomes of working to co-delivery and some of the feedback received from those who took part.

Methods

We used Community Action and co-production techniques working with people with bereavement experience over some months to create a new programme of community-based support for bereavement. We also trialled it and co-created the training with volunteers. We then supported the activity through to volunteer recruitment and delivery, creating a 1–1 matching system for those people who were in the first days of a post-death bereavement, and with carers, working pre-death to support them through the process.

Results

We will report on the outcomes of the first year. In its first year the initiative has created a powerful form of peer support particularly focused at early bereavement which has helped people with early bereavement experiences, including them navigating to future support or turning down formal bereavement support offers. The training for volunteers has been very well evaluated by new volunteers, and focuses on experiential learning, future planning through to bereavement, and building confidence in real life situations.
生活经验是社会知识和行动的强大源泉,它赋予持有者洞察力、知识和观点,往往是改变事物或帮助他人的动力。这种经验对于在设计新服务和塑造适合人民的新工作方式方面弥合差距或重新分配权力以及关注他们所拥有的知识和优势方面也很重要。本演讲将探讨在圣克里斯托弗临终关怀医院与有丧亲经历的人一起使用社区行动方法的合作制作练习。我们将审查共同交付工作的一些成果以及从参与者那里收到的一些反馈。方法我们使用社区行动和联合生产技术,与有丧亲经历的人一起工作了几个月,创建了一个新的以社区为基础的丧亲支持方案。我们也进行了试验,并与志愿者共同创建了培训。然后,我们通过志愿者招募和运送来支持这项活动,为那些刚经历丧亲之痛的人创建了一个1-1匹配系统,并与护理人员一起,在死前工作,支持他们度过这个过程。我们将报告第一年的成果。在第一年,该倡议创造了一种强大的同伴支持形式,特别关注早期丧亲之痛,帮助有早期丧亲经历的人,包括他们走向未来的支持或拒绝正式的丧亲之痛支持。对志愿者的培训得到了新志愿者的好评,培训的重点是体验式学习、从丧亲到未来的规划以及在现实生活中建立信心。
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引用次数: 0
O-16 Intersectionality and palliative care – a rapid review O-16交叉性与姑息治疗-快速回顾
Pub Date : 2023-11-01 DOI: 10.1136/spcare-2023-hunc.16
Briony Hudson, Fiona Taylor, Devi Sagar, Rini Jones, Alison Penny, Ruth Driscoll, Dominic Carter, Sam Royston

Background

Intersectionality is a concept that recognises the interconnected disadvantage and marginalisation based on a person’s multiple characteristics and identities (Crenshaw. University of Chicago Legal Forum. 1989;1989(1); Hankivsky, Grace, Hunting, et al. Int J Equity Health. 2014;13(119)). We know that inequities in palliative care exist (Tobin, Rogers, Winterburn, et al. BMJ Support Palliat Care. 2022; 12(2), 142–151). Intersectionality provides an informative lens through which to explore how the multiple characteristics of a person may influence experiences towards the end of life (Estupiñán Fdez de Mesa, Marcu, Ream, et al. BMJ Open. 2023;13:e066637).

Aim

To examine and map the type and focus of research exploring intersectionality and access to palliative care, summarise existing literature and identify directions for future research.

Methods

Five online databases were searched for qualitative and quantitative studies, published in the last 10 years that explicitly explored the impact of intersectionality between two or more characteristics for people accessing palliative or end of life care or advance care planning (ACP).

Results

Seven eligible papers were identified. Evidence of intersectional impacts were found. Four studies explored the impact of intersectionality on access to and attitudes towards ACP (age and ethnicity; and sexuality, gender and age). Two explored intersectionality and access to care (age and sexuality; ethnicity and gender), one investigated intersectionality (ethnicity and gender) and quality of care in the last year of life. Inconsistent operationalisations of intersectionality complicated the identification of eligible papers.

Conclusions

There is limited evidence exploring the complicated interactions between the different elements of a person and their experiences towards the end of life. Studying intersectionality is complex and challenged by methodological issues and data limitations. A more robust definition of intersectionality, and an agreed theoretical framework will facilitate the sharing and translation of knowledge in this field. Improvements in the quantity and quality of data available, regarding characteristics linked to inequity would enable more nuanced analyses of intersectionality. Coproducing research and services with a diverse range of people could help identify intersections that defy existing analysis, and improve care and future research.
交叉性是一个概念,它承认基于一个人的多重特征和身份的相互关联的劣势和边缘化(克伦肖)。芝加哥大学法律论坛,1989;1989(1);汉科夫斯基,格蕾丝,亨特等人。国际公平卫生,2014;13(119))。我们知道在姑息治疗方面存在不公平现象(Tobin, Rogers, Winterburn等)。BMJ Support Palliat Care. 2022;12(2), 142 - 151)。交叉性提供了一个信息透镜,通过它来探索一个人的多重特征如何影响生命结束时的经历(Estupiñán Fdez de Mesa, Marcu, Ream等)。英国医学杂志。2023;13:e066637)。目的分析和绘制研究交叉性与姑息治疗可及性的类型和重点,总结现有文献并确定未来的研究方向。方法检索5个在线数据库,检索近10年来发表的定性和定量研究,这些研究明确探讨了两种或两种以上特征之间的交叉性对人们获得姑息治疗或临终关怀或预先护理计划(ACP)的影响。结果筛选出7篇符合条件的论文。发现了交叉撞击的证据。四项研究探讨了交叉性对ACP获取和态度的影响(年龄和种族;性,性别和年龄)。其中两篇探讨了交叉性和获得护理的机会(年龄和性别;种族和性别),一项调查了生命最后一年的交叉性(种族和性别)和护理质量。不一致的交叉性操作使合格论文的识别变得复杂。研究一个人的不同因素与他们临终前的经历之间复杂的相互作用的证据有限。研究交叉性是复杂的,并受到方法问题和数据限制的挑战。对交叉性更有力的定义和商定的理论框架将促进这一领域知识的分享和翻译。改善与不平等有关的特征的现有数据的数量和质量,将能够对相互关系进行更细致的分析。与各种各样的人共同开展研究和服务,可以帮助识别无视现有分析的交叉点,并改善护理和未来的研究。
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引用次数: 0
O-02 The development of a tool to streamline analysing and displaying patient centred outcome measures in end of life care services O-02开发一种工具,以简化分析和显示临终关怀服务中以患者为中心的结果测量
Pub Date : 2023-11-01 DOI: 10.1136/spcare-2023-hunc.2
Sarah Churchill, Michael Hanks, Diana Howard

Patient Centred Outcome Measures (PCOMs) such as Phase of Illness or IPOS are highly valued for individual patient level clinical care but seldom used to test or demonstrate cumulative impact of an end of life care service in more strategic conversations (Bradshaw, Santarelli, Mulderrig, et al. Palliat Med. 2021; 35(2): 397–407). PCOMs enable a service to demonstrate quality personalised care alongside more traditional activity analysis such as the avoidance of acute bed days and admissions. We aspired to build a tool to streamline analysing and sharing aggregate PCOMs for end of life care services; both to enable easier cumulative measurement of quality care beyond individual patient experiences and to assist with suitable adaptions and scale of service models. The project team identified four widely used PCOM measures to build an alpha version of the tool in PowerBI (Pearson, et al. Pro Microsoft Power Platform. 2020). Whilst building the overarching tool, it was identified that different organisations and service teams had different levels of resource and expertise. We thus produced three additional resources alongside the tool to ensure it is pragmatic for a variety of organisations outside of academic research. The tool has a Creative Commons License to ensure all organisations can shape and use the tool for their own needs. The tool and the supporting materials are publicly available and ready for use. We anticipate having preliminary results from tool use in Summer 2023. We have started to use the tool’s analysis and visuals with three partner organisations to explore how best they can collect, analyse, display and share PCOMs. We aspire to share the initial results from this process and our evaluation of the tool’s strengths and weaknesses by November 2023. Conclusions from our initial design of the tool have highlighted that this methodology can be used for wider PCOMs. A dynamic datasest that is attractively presented and easily interrogated can effectively engage clinicians in service improvement.
以患者为中心的结果测量(PCOMs),如疾病阶段或IPOS,对于个体患者水平的临床护理非常有价值,但很少用于在更具战略性的对话中测试或证明临终关怀服务的累积影响(Bradshaw, Santarelli, Mulderrig等)。Palliat Med. 2021;35(2): 397 - 407)。PCOMs使服务能够展示高质量的个性化护理,同时进行更传统的活动分析,如避免急性住院天数和入院。我们希望建立一个工具来简化分析和共享临终关怀服务的综合pcom;既能在病人个人经历之外更容易地对护理质量进行累积衡量,又能协助对服务模式进行适当的调整和扩大规模。项目团队确定了四种广泛使用的PCOM度量,以在PowerBI中构建该工具的alpha版本(Pearson等)。Pro Microsoft Power Platform. 2020)。在构建总体工具时,我们发现不同的组织和服务团队拥有不同水平的资源和专业知识。因此,我们在该工具的基础上增加了三个额外的资源,以确保它对学术研究以外的各种组织都是实用的。该工具有一个创作共用许可证,以确保所有组织都可以根据自己的需要塑造和使用该工具。该工具和支持材料是公开的,可以随时使用。我们预计将在2023年夏季获得工具使用的初步结果。我们已经开始与三个合作伙伴组织一起使用该工具的分析和视觉效果,以探索他们如何最好地收集、分析、显示和共享pcom。我们希望在2023年11月之前分享这一进程的初步结果以及我们对该工具优缺点的评估。我们对该工具的初步设计得出的结论强调,该方法可用于更宽的pcom。一个动态的数据,是有吸引力的呈现和容易询问可以有效地参与临床医生的服务改进。
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引用次数: 0
O-21 A collaborative hospice approach to the provision of a clinic for those with motor neurone disease O-21为运动神经元疾病患者提供诊所的合作临终关怀方法
Pub Date : 2023-11-01 DOI: 10.1136/spcare-2023-hunc.21
Sarah Perry, Jo Poyner, Elizabeth Handcock

Background

Two hospices provide separate support across the same county, for individuals and their loved ones affected by Motor Neurone Disease (MND). To achieve equal access to regular collaborative holistic assessments and support from the Multi-Disciplinary Team (MDT) (National Institute for Health and Care Excellence. Motor neurone disease: assessment and management. [NG42], 2016), a hospice based clinic where specialist MDT support could be accessed, alongside social and practical advice was identified.

Aims

To provide an equitable approach across the county for people with MND and their loved ones to access support from specialist health professionals (Raynor, Alexander, Corr, et al. J Neurol Neurosurg Psychiatry.2003;74:1258–61) in addition to support from the Motor Neurone Disease Association (MNDA) optimising the quality of life for all (Flemming, Turner, Bolsher, et al. Palliat Med. 2020; 34(6):708–730). It would also enable regular reviews with close collaboration between the MDT services involved (O’Brien, Whitehead, Jack, et al. Bri J Neuroscience Nurs. 2013;7(4)).

Methods

A one-hour appointment would be available with the MND Clinical Nurse Specialist, and respective hospice Occupational Therapist and Physiotherapist with a holistic review (Oliver. Palliat Care Res Treat. 2019; 1–14) and assessment being undertaken. The MNDA were invited to support the clinic to optimise the support available for the individual and their family. After each appointment an outcome letter incorporating the action plan for respective professionals would be sent, ensuring a collaborative care approach.

Results

The clinic has enabled core MDT members to see and review individuals collaboratively supporting a cohesive approach to patient care and support, with 13 clinics and 52 appointments being available. Also, it has provided the opportunity to indirectly introduce the hospice setting and its services, maximising the support opportunities available for individuals and their loved ones at an early stage.

Conclusion

The monthly clinic is a well-established integral part of the care and support in the county for people living with MND, ensuring they have equitable access to regular, collaborative MDT reviews and support. Further development of the clinic is being explored including the hosting of the area MNDA support group and stand-alone support for those caring for a loved one with MND.
背景:在同一个县,两家临终关怀院分别为患有运动神经元疾病(MND)的个人及其亲人提供支持。实现平等获得多学科小组(国家健康和护理卓越研究所)定期协作全面评估和支持的机会。运动神经元疾病:评估和管理。[NG42], 2016),一个基于临终关怀的诊所,在那里可以获得专家MDT支持,以及社会和实用的建议。目的在全国范围内为MND患者及其亲人提供公平的途径,使他们能够获得专业卫生专业人员的支持(Raynor, Alexander, Corr等)。J Neurol neurosurgery Psychiatry.2003; 74:1258-61)。此外,来自运动神经元疾病协会(MNDA)的支持优化了所有人的生活质量(Flemming, Turner, Bolsher等)。Palliat Med. 2020;34(6): 708 - 730)。它还可以通过MDT服务之间的密切合作进行定期审查(O 'Brien、Whitehead、Jack等)。神经科学与护理杂志,2013;7(4);方法与MND临床护理专家,以及各自的临终关怀职业治疗师和物理治疗师进行一小时的预约,并进行全面审查(Oliver。Palliat Care Res treatment . 2019;1-14)和正在进行的评估。MNDA被邀请支持诊所,以优化为个人及其家庭提供的支持。每次预约后,将发送一封包含各自专业人员行动计划的结果信,以确保合作护理方法。结果该诊所使核心MDT成员能够看到和审查个人协作,支持一个有凝聚力的方法来照顾和支持病人,有13个诊所和52个预约可用。此外,它还提供了间接介绍临终关怀环境及其服务的机会,最大限度地在早期阶段为个人及其亲人提供支持机会。每月门诊是该县对MND患者的护理和支持的一个完善的组成部分,确保他们能够公平地获得定期的、协作的MDT审查和支持。正在探索该诊所的进一步发展,包括主办该地区的老年痴呆症支持小组,并为照顾患有老年痴呆症的亲人的人提供独立支持。
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引用次数: 0
O-20 Developing and embedding a youth social action culture in a paediatric hospice O-20在儿科临终关怀院发展和嵌入青年社会行动文化
Pub Date : 2023-11-01 DOI: 10.1136/spcare-2023-hunc.20
Anna Bowyer, Lynne Phelps, Katie Simmons

Background

T&ycirc; Hafan hospice supports children with life-shortening conditions and their families. Historically, decision-making within the hospice has utilised a top-down approach. Article 12 of the United Nations Convention on the Rights of the Child, states: children and young people have the right to have their views heard and considered on matters that affect them. Youth social action (YSA) enables children and young people to design and implement meaningful change.

Aim

As a children’s and young people’s charity, we want to develop and embed a YSA culture and structure to underpin decision-making in the hospice. Ensuring the inclusion of the views of non-verbal children and young people and those with complex disability.

Methods

Apr. – Aug. 2022: Application and award of Children in Need funding for YSA projects. Sept. 2022 – Feb. 2023: YSA-informed recruitment of YSA worker, with children’s and young people’s contributions spanning funding allocation to notifying successful applicant. Mar. 2023 – present: Scoping exercises, staff training on gathering the views of non-verbal children and young people and children and young people with complex disability, familiarising them with YSA and initial implementation of YSA practice within the hospice.

Results

To date, YSA project outcomes include: Easter event designed by children and young people for the children and young people; a hospice mural co-led by children and young people; and partnering with another charity to assist the children and young people in devising a creative piece around a matter that is important to them culminating in a dramatic production where families and education staff will be invited to view. Children and young people have reported an increased sense of ownership and wellbeing, while staff have noted the value in creating opportunities for decision-making to be influenced by children’s and young people’s unique opinions.

Conclusion

Implementing a YSA approach within T&ycirc; Hafan is in its infancy, yet it has already fostered meaningful, children and young people-led change. The funding ends in July 2024 and we hope to evidence the importance and value of embedding a YSA approach going forward.
背景T& ycirc;哈凡临终关怀中心为生命缩短的儿童及其家人提供支持。从历史上看,临终关怀的决策一直采用自上而下的方法。《联合国儿童权利公约》第12条规定:儿童和青年有权就影响他们的事项发表意见并得到考虑。青年社会行动(YSA)使儿童和青年能够设计和实施有意义的变革。作为一个儿童和年轻人的慈善机构,我们希望发展和嵌入一种YSA文化和结构,以支持临终关怀的决策。确保纳入不会说话的儿童和青年以及有复杂残疾的人的意见。方法:2022年4月- 8月:申请并颁发“需要帮助的儿童”项目资助。2022年9月至2023年2月:通知YSA招聘YSA工作人员,儿童和年轻人的捐款跨越资金分配,通知成功的申请人。2023年3月至今:范围界定练习,员工培训,收集无语言能力的儿童和青少年以及复杂残疾的儿童和青少年的意见,让他们熟悉生命安全,并在安宁疗护内初步实施生命安全实践。迄今为止,YSA项目成果包括:由儿童和青少年为儿童和青少年设计的复活节活动;由儿童和年轻人共同领导的临终关怀壁画;并与另一家慈善机构合作,帮助儿童和年轻人围绕对他们重要的事情设计一个创造性的作品,最终以戏剧形式出现,家庭和教育人员将被邀请观看。据报告,儿童和年轻人的主人翁感和幸福感有所增强,而工作人员则指出,创造机会使决策受到儿童和年轻人独特意见的影响是有价值的。结论在T& circ内实施YSA方法;哈凡还处于起步阶段,但它已经促成了由儿童和年轻人主导的有意义的变革。资金将于2024年7月结束,我们希望证明未来嵌入YSA方法的重要性和价值。
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