Background There is increasing emphasis on ensuring that access to healthcare is equitable in the UK, yet on-going evidence demonstrates that minority ethnic communities are underrepresented in accessing palliative care. A Marie Curie Hospice in Wales initiated a funded outreach project with a keyworker post to engage minority ethnic communities, aiming to improve access to palliative care services. Methods The study aim is to evaluate the outreach project and keyworker post. A longitudinal evaluation of the initiative is being undertaken, encompassing interviews with hospice and community healthcare professionals, minority ethnic communities and the project keyworker. Key project documents, such as reports, and hospice ethnicity data are also being analysed. This presentation reports on data from semi-structured interviews with hospice staff and keyworker, and analysis of project reports. Relevant ethical and governance approvals were obtained. Results Hospice healthcare professionals highlighted challenges when providing palliative care to individuals from minority ethnic communities, particularly language barriers. Minority ethnic communities in South Wales appeared uninformed about local palliative care services and the keyworker implemented a range of initiatives to raise awareness and widen hospice referral routes. Additionally, the keyworker supported healthcare professionals when caring for people from minority ethnic communities, for example meeting religious needs at the end-of-life. Looking ahead, hospice staff are keen to increase their understanding of different ethnic groups and cultures, while the keyworker hopes to work with community healthcare teams to improve referral rates to the hospice. Conclusions and application The evaluation has demonstrated the progress made by the keyworker to engage minority ethnic communities and support hospice staff to holistically care for people from different ethnic groups. The keyworker role appears, at this early stage in the project, to be an excellent way of engaging minority ethnic communities and improving access to palliative care services.
Your leader on NHS reforms (Nursing Standard, January 14) betrays a distressing inability to see beyond the existing system. It expresses all the usual fear of the unknown rather than exploring the opportunities a change could create. Why, for example, object to a development on the grounds that it might increase nurses' pay and improve working conditions?
Objectives: To analyse service use and variation for people with severe mental illness in the last year of life in Wales. Methods: This is an observational retrospective cohort study between 2018 to 2023 using anonymised linked routinely collected health datasets within a data dashboard. Results: We identified n=4722 (2.3%) deaths with ICD-10 codes for severe mental illness for the period 2018-2023. As a group people with severe mental illness die younger, are in receipt of specialist palliative care at lower rates, die more often in institutional settings rather than their own homes and comorbidity indicates more unscheduled care use in the last year of life. Conclusions: Unscheduled care use in the last year of life is associated with comorbidity indicating opportunities for upstream intervention to improve treatment, experience and quality of life for people with severe mental illness. Further investigation such as mixed methodological approaches to examine experiences of those with severe mental illness in the last year of life, and the human and systems factors influencing the nature and effectiveness of unscheduled delivery for this patient cohort alongside developments in data linkage that include general practice, social care, nursing and specialist palliative care inputs are needed.
A prudent approach to provide quality end of life care (EoLC) advocates for active participations of the patients in designing the service (Wynne, n.d.). Patients and carers demand for improvements in decision-making at the EoLC (Sinuff et al, 2015). But there is a lack of evidence on understanding of people's attitudes towards EoLC and shared decision-making (Hajizadeh, Uhler, Herman, et al., 2016).
Aim
To increase understanding of people's views, feelings and preferences around EoLC and decision making.
Method
An online survey was conducted using an electronic survey tool. Descriptive statistics and thematic analysis were used to perform data analysis.
Results
2210 people (Age: Mean ±SD; 55±14 years) participated in the survey, 43% of those were members of the public, 29% were patients/carers, and 23% were health professionals. 49% of respondents thought that available EoLC and palliative care was inadequate and only 31% believed that people could access these facilities. More than 60% people did not know if cultural/religious/ spiritual needs were met during EoLC. 58% believed that end of life care for older people should have equal priority for the NHS. 43% of respondents did not know where to get the support if someone close to him/her were to die. Only 41% believed that people could take part in decision-making around EoLC though 85% of respondents felt confident to get involved in EoLC decision-making. 82% thought that their preference should take priority over wishes of others, 61% considered that involving others in the EoLC decision making of using life–supporting technology would place extra burden on them whereas 27% considered that this would limit their privacy.
Conclusions
Understanding public attitudes is essential to understanding changing contexts of care. Developing a need-based EoLC model will be innovative and enhances an effective service delivery.
The quality of the recruitment process has a fundamental influence on the potential value of research outputs. The bereavement study aimed to develop a set of core outcomes specific to bereavement support services for bereaved adults. A consensus methodology involving all the key stakeholders (including service users) was used to address the research questions. Nine hospices in the UK were approached to facilitate recruitment of study participants. We report on the recruitment of service users.
Methods
Service users were asked to answer to a two-round DELPHI questionnaire (Hasson, Keeney & McKenna, 2000). Past service users could not be contacted because hospices would not normally retain the details of the people who have left their services. We relied on hospice staff who regularly saw bereavement support service users to identify users who were on their way to recovery and were able to reflect on the outcomes that were important when assessing the value of the service they received. Hospices were given two months to carry out recruitment.
Results
Hospice-based health professionals helped us refine inclusion and exclusion criteria, time from loss was not an inclusion/exclusion criteria. Some of the hospices had lower recruitment rates mainly due to the tight time schedule set for recruitment. One in three of the service users replied to the first questionnaires and, of these, 90% participated to the second round of questionnaires.
Conclusions
Hospice staff played an important role in supporting the recruitment of bereavement service users, but researchers need to allow enough time for efficient recruitment. Earlier engagement allowed active influence over the recruitment process. Hospital 'internal' readiness to recruit is an important factor. Both the literature (Bentley & O'Connor, 2015; Akard, Gilmer, Miller et al., 2014) and practice suggest that bereavement study participants are themselves the best judges on when to participate in research studies and time from loss is not an important inclusion/exclusion criteria.
Abstract The importance of linking evidence into practice and policy is recognised as a key pillar of a prudent approach to healthcare; it is of importance to healthcare professionals and decision-makers across the world in every speciality. However, rapid access to evidence to support service redesign, or to change practice at pace, is challenging. This is particularly so in smaller specialties such as Palliative Care, where pressured multidisciplinary clinicians lack time and skill sets to locate and appraise the literature relevant to a particular area. Therefore, we have initiated the Palliative Care Evidence Review Service (PaCERS), a knowledge transfer partnership through which we have developed a clear methodology to conduct evidence reviews to support professionals and other decision-makers working in palliative care. PaCERS methodology utilises modified systematic review methods as there is no agreed definition or an accepted methodology for conducting rapid reviews. This paper describes the stages involved based on our iterative recent experiences and engagement with stakeholders, who are the potential beneficiaries of the research. Uniquely, we emphasise the process and opportunities of engagement with the clinical workforce and policy-makers throughout the review, from developing and refining the review question at the start through to the importance of demonstrating impact. We are faced with the challenge of the trade-off between the timely transfer of evidence against the risk of impacting on rigour. To address this issue, we try to ensure transparency throughout the review process. Our methodology aligns with key principles of knowledge synthesis in defining a process that is transparent, robust and improving the efficiency and timeliness of the review. Our reviews are clinically or policy driven and, although we use modified systematic review methods, one of the key differences between published review processes and our review process is in our relationship with the requester. This streamlining approach to synthesising evidence in a timely manner helps to inform decisions faced by clinicians and decision-makers in healthcare settings, supporting, at pace, knowledge transfer and mobilisation.
Introduction A major challenge in developing new models of palliative care is to identify the current needs of the public patients and carer (Dixon 2015). There is a lack of evidence on people’s attitudes towards end of life care (EoLC) in Wales. Aim To increase understanding of people’s feelings views knowledge and preferences around EoLC. Method An online survey was conducted using an electronic survey tool. Descriptive statistics and thematic analysis were used to perform data analysis. Results 2210 people (Age: Mean +SD; 55+14 years) participated in the survey 43% of those were members of the general public 29% were patients/carers and 23% were health professionals. 49% of respondents thought that available palliative care was inadequate and 92% believed that end of life care for dying people should have equal priority for the NHS. 95% of respondents thought that expressing preferences around EoLC in advance was important but only 13% had done this in practice and 60% did not know how to plan their EoLC. However the top three needs in EoLC were identified as having a trained carer (84%) access to other professionals (59%) and emergency care (44%). The top three preferences for EoLC were being surrounded by loved ones (62%) maintaining dignity (55%) and a feeling of peace (40%). Just 24% respondents would chose to be at home while receiving EoLC. Conclusions Understanding public attitudes is essential to understanding changing contexts of care. Developing a need-based palliative care model enhances an effective service delivery. Reference . Dixon J, et al . Equity in the provision of palliative care in the UK: Review of evidence 2015;pg. 1–145. London: Personal Social Services Research Unit. Available at: https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report-full-lse.pdf
Bereaved adults may develop complicated grief reactions associated with mental and physical health problems and good support services are vital. This research included a systematic review and the development of a core outcome set for bereavement support service research in palliative care. The collaborative relationship (PI) with the Research Partners (RPs) was fully planned and then documented through reflective logs. PI was central to this research.
Aim
To detail the RPs' contribution to this study.
Methodology
RPs helped refine the research question. Following this a study protocol was agreed that set out the steps needed to ensure that: (1) Research design and methods used were appropriate for bereaved adults; (2) All documentation and outputs were accessible to 'lay' readers; (3) RPs 'experience based' expertise was embedded in ongoing planning, outputs and ongoing research design; (4) The experience for RPs was worthwhile leading to new skills and knowledge detailed in the reflective logs. Reflective log sheets were used to capture how well this was achieved. Researchers and RPs completed these independently. Their reflections were shared at quarterly meetings and used to inform each stage of the research.
Results
The reflective logs confirmed that steps 1 to 5 were carried out. RP inputs achieved the planned impact (e.g. the questionnaires held hardly any missing data, reflecting content and face-validity). Enhancement of the bereavement research through planned, documented RP collaboration was thus confirmed.
Conclusion
Well-planned and documented PI can enhance the quality of health care research. Researchers felt that the solid collaboration with the research partner broadened their perspective and signalled a clear departure from a simple tick-box exercise. Research Partners confirmed the rich learning gained through participation.
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