Northern Ireland Hospice

Northern Ireland Hospice bereavement café aims to connect local people together to support each other through grief. Historically our hospice bereavement support could only be provided to families, carers who had previously accessed the hospice’s services. This support included face to face and group work sessions. The Covid-19 pandemic brought the issue of grief and loss into sharp focus, with many bereaved people not having the opportunity to mourn the death of a loved one with their social support networks. In response to this it was identified that there needed to be greater access to bereavement support for the local community.Started in May 2023, the café provides a drop-in service one evening a month, offering a safe space aimed at helping those coping with the loss of a loved one. This informal service has provided an opportunity to encourage local people and communities to support each other through their grief and loss.The café is designed to be a supportive environment for conversation, reflection or just being there to listen to other stories and experiences, and through encouraging peer to peer support. Attendees may have been through a recent bereavement or may have lost someone a while ago and just want to connect with others who are grieving. All sessions are overseen by the hospice social work team who assist with refreshments and are able to offer further advice or guidance if required.Our Bereavement café has provided support for over 200 people since opening its doors to the local community. Feedback from attendees has been positive, with many developing friendships and sharing resources. With the focus on a community led initiative, a training programme has been developed with the vision to recruit and train bereavement café volunteers.

BackgroundHospice and Palliative Care (HPC) is in high demand in China; however, the country is facing the shortage of qualified HPC nurses. A well-suited competence framework is needed to promote HPC human resource development. Nevertheless, existing unstandardized single-structured frameworks may not be sufficient to meet this need. This study aimed at constructing a comprehensive multi-structured HPC competence framework for nurses.MethodsThis study employed a mixed-method approach, including a systematic review and qualitative interview for HPC competence profile extraction, a two-round Delphi survey to determine the competences for the framework, and a cross-sectional study for framework structure exploration. The competence profiles were extracted from publications from academic databases and interviews recruiting nurses working in the HPC field. The research team synthesized profiles and transferred them to competences utilizing existing competence dictionaries. These synthesized competences were then subjected to Delphi expert panels to determine the framework elements. The study analyzed theoretical structure of the framework through exploratory factor analysis (EFA) based on a cross-sectional study receiving 491 valid questionnaires.ResultsThe systematic review involved 30 publications from 10 countries between 1995 and 2021, while 13 nurses from three hospitals were interviewed. In total, 87 and 48 competence profiles were respectively extracted from systematic review and interview and later synthesized into 32 competences. After the Delphi survey, 25 competences were incorporated into the HPC competence framework for nurses. The EFA found a two-factor structure, with factor 1 comprising 18 competences namely Basic Competences; factor 2 concluding 7 competences namely Developmental Competences.ConclusionsThe two-factor HPC competence framework provided valuable insights into the need and directions of Chinese HPC nurses’ development.

This study assesses the perceived impact and benefits of Project ECHO (Extension for Community Healthcare Outcomes), a tele-mentoring intervention for health and social care providers, patients and the health system in Northern Ireland. Having access to a specialist, a space to share experiences, and being able to disseminate up-to-date best practice were all cited as improving provider knowledge as well as improving quality of care for patients. Healthcare providers reported being more confident in managing patients and that relationships had been improved between different levels of the health system. ECHO was described as improving access to education and training by removing geographic and time barriers. This is one of the first studies to qualitatively analyse impact across a number of different clinical and social care ECHO networks. The results strongly indicate the perceived benefit of ECHO in improving provider, patient and health system outcomes such as increased healthcare provider knowledge and confidence to manage patients at primary levels of the health system. This has implications for future service design, particularly within the context of COVID-19 in which virtual and online training is necessitated by social distancing requirements.

BackgroundThe publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and expertise that lay people may offer to the development, conduct and dissemination of clinical research. The UK Standards provide a benchmark which researchers should aim to achieve, yet its implementation continues to be a step wise iterative process of change management. A recent evaluation by a regional research group has suggested that our understanding of PI is enhanced through reflection on the UK Standards. We report on the utility of PI in the design, conduct and dissemination of the HIDDen study, a national, multicentre clinical study based across three UK centres.MethodsA retrospective review of PI within the HIDDen study was conducted using field notes taken by the lead author from interactions throughout their involvement as a lay representative on the study. Key members of the HIDDen study were interviewed and data analysed to explore adherence to the UK Standards.ResultsThere was universal support for PI across the study management group with genuine inclusivity of lay members of the committee. All six of the UK Standards were met to varying degrees. The greatest opportunities lay in ‘working together’ and ‘support and learning’. There were challenges meeting ‘governance’ with evidence of participation in decision making but less evidence of opportunities in management, regulation, leadership.ConclusionThis study concurs with previous research supporting the utility of the Standards in the conduct and evaluation of PI in clinical research. To our knowledge this is the first multi-national study to be evaluated against the UK Standards.

BackgroundSeveral studies have confirmed positive outcomes using virtual reality (VR) for clinical conditions such as anxiety disorders, phobias, post-traumatic stress syndrome, eating disorders and pain management. VR has also been employed to promote emotional wellbeing and induce positive emotions for people in hospital. Research into the clinical applicability of VR in health care settings is still in its infancy. Until now, little research has focused on VR in a hospice setting with one other hospice in the UK that has started a small research pilot. The aim of this study is to explore the feasibility, acceptability and potential benefits of using VR for people with incurable long term conditions in a hospice setting.MethodsThis was a prospective observation and interview study of hospice patients’ experiences of taking part in a 30 minute VR session where they were immersed in a virtual world.ResultsObservational data of VR sessions with 20 patients showed that most people respond positively. Reactions were of joy, happiness and amazement or of feeling peaceful and calm. Some people voiced that they were able to forget symptoms. These participants valued being able to visit somewhere that they now never would while others were able to visit places, often from younger days, that they wished to see again, expressing that it allowed recourse to a happy time of life. Some participants’ responses were more muted. Those participants would have preferred to have further opportunity to think about where they would like to visit having experienced a session. Some people, however, declined to take part stating that they saw no need for it, or that they felt that it was new and not for them.ConclusionPreliminary findings are encouraging with VR well received by staff and patients alike. VR may best be targeted to people who are most likely to benefit from the technology.

The traditional approach to research ethics is to ensure that all ethical issuesare adhered to through the scrutiny of research proposals by research ethicscommittees, themselves sitting within national research governance frameworks.The current approach implies that all potential ethical issues can be consideredand mitigated prior to the research. This article is a perspective piece wherebywe consider how this approach, on its own, is not enough to ensure ethicalpractice. We draw attention to the limitations of current ethical procedures inthe inherent detachment between the researcher and research participants. Weargue that applying a person-centred approach to research ethics allows forcontextual and situational factors and places the relationship between researchparticipants and researcher as central.

The optimal prognostic factors in patients with advanced cancer are not known, as a comparison of these is lacking. The aim of the present study was to determine the optimal prognostic factors by comparing validated factors. A multicenter, prospective observational cohort study recruited patients over 18 years with advanced cancer. The following were assessed: clinician-predicted survival (CPS), Eastern Cooperative Oncology Group performance status (ECOG-PS), patient reported outcome measures (anorexia, cognitive impairment, dyspnea, global health), metastatic disease, weight loss, modified Glasgow Prognostic Score (mGPS) based on C-reactive protein and albumin, lactate dehydrogenase (LDH), and white (WCC), neutrophil (NC), and lymphocyte cell counts. Survival at 1 and 3 months was assessed using area under the receiver operating curve and logistic regression analysis. Data were available on 478 patients, and the median survival was 4.27 (1.86-7.03) months. On univariate analysis, the following factors predicted death at 1 and 3 months: CPS, ECOG-PS, mGPS, WCC, NC (all p < .001), dyspnea, global health (both p ≤ .001), cognitive impairment, anorexia, LDH (all p < .01), and weight loss (p < .05). On multivariate analysis ECOG-PS, mGPS, and NC were independent predictors of survival at 1 and 3 months (all p < .01). The simple combination of ECOG-PS and mGPS is an important novel prognostic framework which can alert clinicians to patients with good performance status who are at increased risk of having a higher symptom burden and dying at 3 months. From the recent literature it is likely that this framework will also be useful in referral for early palliative care with 6-24 months survival. This large cohort study examined all validated prognostic factors in a head-to-head comparison and demonstrated the superior prognostic value of the Eastern Cooperative Oncology Group performance status (ECOG-PS)/modified Glasgow Prognostic Score (mGPS) combination over other prognostic factors. This combination is simple, accurate, and also relates to quality of life. It may be useful in identifying patients who may benefit from early referral to palliative care. It is proposed ECOG-PS/mGPS as the new prognostic domain in patients with advanced cancer.

The lack of agreement and knowledge of optimal endpoints in cachexia trials have impeded progress in finding interventions counteracting the devastating effects cancer cachexia has on morbidity and mortality. An endpoint should both be sensitive enough to detect change and specific enough not to be influenced by other conditions or treatments. There is a wealth of potential and applied endpoints in trials investigating cachexia. As of today, there is no generally acknowledged consensus, but assessments of key factors such as body composition should continue to be applied. However, the impact and effect size necessary to achieve clinical benefit using these endpoints are not clear. Further, the use of other endpoints assessing physical function, symptom evaluation and quality of life remains to be elucidated. It is essential that endpoints are clinically relevant and further research is therefore needed to develop endpoints that are meaningful for patients with cachexia.