Pub Date : 2023-11-01DOI: 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.
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Pub Date : 2023-11-01DOI: 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。
{"title":"O-06 Creating a polyphonic strategy for paediatric palliative care. A new organisational direction created through storytelling and artwork","authors":"Will McLean","doi":"10.1136/spcare-2023-hunc.6","DOIUrl":"https://doi.org/10.1136/spcare-2023-hunc.6","url":null,"abstract":"<h3>Background</h3> 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, 4<sup>th</sup> ed). We are creating a new strategic plan to deliver paediatric palliative care, informed by numerous voices through a storytelling approach to engage children. <h3>Aims</h3> 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. <h3>Methods</h3> 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. <h3>Results</h3> 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. <h3>Conclusion</h3> 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.","PeriodicalId":19619,"journal":{"name":"Oral Presentations - Late-Breaking Proffered Abstracts","volume":"41 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":"135326811","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}
Pub Date : 2023-11-01DOI: 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.
{"title":"O-22 The initial impact of a joint lung and enhanced supportive care clinic on patient outcomes at a cancer centre","authors":"Alexandra Mcdougall, Carles Escriu, Matthew Howell, Jonathan Heseltine, Tim Cook, Sarah Rose, June Holmes, Helen Wong, Daniel Monnery","doi":"10.1136/spcare-2023-hunc.22","DOIUrl":"https://doi.org/10.1136/spcare-2023-hunc.22","url":null,"abstract":"<h3>Background</h3> 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. <h3>Aims</h3> To evaluate an integrated ESC model within lung cancer care. To assess the impact on patient outcomes and identify patient needs. <h3>Methods</h3> 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. <h3>Results</h3> 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. <h3>Conclusion</h3> 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.","PeriodicalId":19619,"journal":{"name":"Oral Presentations - Late-Breaking Proffered Abstracts","volume":"91 3","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135326281","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}
Pub Date : 2023-11-01DOI: 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}
Pub Date : 2023-11-01DOI: 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.
{"title":"O-03 Uncovering the everyday experiences and emotional engagements of clinical and non-clinical hospice staff","authors":"Natalie Richardson","doi":"10.1136/spcare-2023-hunc.3","DOIUrl":"https://doi.org/10.1136/spcare-2023-hunc.3","url":null,"abstract":"<h3></h3> 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.","PeriodicalId":19619,"journal":{"name":"Oral Presentations - Late-Breaking Proffered Abstracts","volume":"24 4","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135327058","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}
Pub Date : 2023-11-01DOI: 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.
{"title":"O-17 Powerful when fragile: how people with lived experience of bereavement are changing bereavement support for everyone","authors":"Mary Hodgson, Jan Noble","doi":"10.1136/spcare-2023-hunc.17","DOIUrl":"https://doi.org/10.1136/spcare-2023-hunc.17","url":null,"abstract":"<h3>Background</h3> 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. <h3>Aims</h3> 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. <h3>Methods</h3> 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. <h3>Results</h3> 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.","PeriodicalId":19619,"journal":{"name":"Oral Presentations - Late-Breaking Proffered Abstracts","volume":"78 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":"135325696","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}
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。
{"title":"O-16 Intersectionality and palliative care – a rapid review","authors":"Briony Hudson, Fiona Taylor, Devi Sagar, Rini Jones, Alison Penny, Ruth Driscoll, Dominic Carter, Sam Royston","doi":"10.1136/spcare-2023-hunc.16","DOIUrl":"https://doi.org/10.1136/spcare-2023-hunc.16","url":null,"abstract":"<h3>Background</h3> 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). <h3>Aim</h3> 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. <h3>Methods</h3> 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). <h3>Results</h3> 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. <h3>Conclusions</h3> 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.","PeriodicalId":19619,"journal":{"name":"Oral Presentations - Late-Breaking Proffered Abstracts","volume":"66 4","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135325916","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}
Pub Date : 2023-11-01DOI: 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。
{"title":"O-02 The development of a tool to streamline analysing and displaying patient centred outcome measures in end of life care services","authors":"Sarah Churchill, Michael Hanks, Diana Howard","doi":"10.1136/spcare-2023-hunc.2","DOIUrl":"https://doi.org/10.1136/spcare-2023-hunc.2","url":null,"abstract":"<h3></h3> 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.","PeriodicalId":19619,"journal":{"name":"Oral Presentations - Late-Breaking Proffered Abstracts","volume":"39 2","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135326617","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}
Pub Date : 2023-11-01DOI: 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.
{"title":"O-21 A collaborative hospice approach to the provision of a clinic for those with motor neurone disease","authors":"Sarah Perry, Jo Poyner, Elizabeth Handcock","doi":"10.1136/spcare-2023-hunc.21","DOIUrl":"https://doi.org/10.1136/spcare-2023-hunc.21","url":null,"abstract":"<h3>Background</h3> 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. <h3>Aims</h3> 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)). <h3>Methods</h3> 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. <h3>Results</h3> 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. <h3>Conclusion</h3> 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.","PeriodicalId":19619,"journal":{"name":"Oral Presentations - Late-Breaking Proffered Abstracts","volume":"24 3","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135326820","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}
Pub Date : 2023-11-01DOI: 10.1136/spcare-2023-hunc.20
Anna Bowyer, Lynne Phelps, Katie Simmons
Background
Tŷ 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 Tŷ 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.
{"title":"O-20 Developing and embedding a youth social action culture in a paediatric hospice","authors":"Anna Bowyer, Lynne Phelps, Katie Simmons","doi":"10.1136/spcare-2023-hunc.20","DOIUrl":"https://doi.org/10.1136/spcare-2023-hunc.20","url":null,"abstract":"<h3>Background</h3> 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. <h3>Aim</h3> 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. <h3>Methods</h3> 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. <h3>Results</h3> 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. <h3>Conclusion</h3> 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.","PeriodicalId":19619,"journal":{"name":"Oral Presentations - Late-Breaking Proffered Abstracts","volume":"54 2","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135325480","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}