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Background: Blogging can help to maximise the impact of one's work in academia and beyond by making research findings accessible for multiple knowledge users, such as healthcare professionals and the public, as well as other researchers. As part of the knowledge exchange and dissemination activities of the Model for Dementia Palliative Care Project, this study explored stakeholders' views of blogs as a means to translate research findings. Methods: A web-based survey was developed, piloted, and revised. It was distributed electronically via key dementia and palliative care organisations websites, newsletters, social media platforms, and within the staff mailing lists of five Universities in Ireland. Data were analysed using descriptive statistics and content analysis. Results: Complete responses were received from 128 participants. The majority of respondents were healthcare researchers (n = 53), followed by healthcare providers (n = 46). The preferred methods of reviewing research findings were scientific papers, websites and news articles. Respondents read healthcare blogs "sometimes" (39.1%), with < 19% reading them "often" or "very often". Receiving an email notification might increase the likelihood of reading a new blog post for 83% of respondents. Barriers to engaging with blogs included lack of time, preference for other media, lack of awareness regarding available blogs, and concerns about the credibility and source of information. An appropriate length and the author of the blog were key features that encouraged engagement with a blog. Conclusions: Despite respondents choosing a scientific paper as their preferred method to consume research findings, many indicated an openness to reading blogs on their area of interest. Creating concise, relevant, and credible blogs, and suitably promoting them, could increase the impact and reach of healthcare research, such as in the emerging field of dementia palliative care, and thus promote translation of research findings into practice. [ABSTRACT FROM AUTHOR]

Background: Assessing and measuring the experience and quality of care provided is central to the improvement of care delivery of all healthcare systems. This paper reports on the development of a survey instrument to capture the experiences of care at end of life from the perspective of bereaved relatives in the Republic of Ireland. Methods: A multi-method, multi-stakeholder, sequential approach was adopted for this study. Items for inclusion in the survey instrument bank were identified through (1) a feasibility study and scoping literature review, (2) expert panel programme board review, (3) focus groups and (4) gap analysis. The following steps were undertaken to prioritise the items for inclusion in the final survey instrument: (1) a Delphi study (2) technical expert panel review (3) cognitive interviews with bereaved relatives and an (4) expert panel programme board review. Results: Following an iterative process with key stakeholders, a survey instrument was developed with sections focusing on the provision of care at home, in the last nursing home / residential care facility, hospice and hospital, as well as care experience in the last 2 days of life, the relative's experiences of care and support, the circumstances of care surrounding death and demographic information. In total, a bank of 123 questions were prioritised to be included in the National End of Life Survey instrument. Conclusion: The survey will provide a standardised national approach to capturing the experience of care of those who have died, from the perspective of bereaved relatives in the Republic of Ireland. This will allow health service providers, policy makers and regulators to gather important insights into the experiences of care at end of life and will help fulfil the requirement of healthcare services to ensure they are providing high-quality care. [ABSTRACT FROM AUTHOR]

Background: Globally the state of palliative care research remains uncertain. Questions remain regarding impact, funding, and research priorities. Building upon previous research, this review examines palliative care research in Ireland and contributes to a wider international debate on the state of palliative care research. Methods: A systematic mapping review was undertaken. Eight bibliographic databases and thesis repositories were searched from May 2012 to April 2017. Palliative care related search terms were combined with "Ireland" or "Irish" to increase search sensitivity. Inclusion criteria were applied by two independent reviewers. Descriptive analysis was completed using IBM SPSS v23. Thematic analysis was undertaken using a data-driven approach to develop new themes. Results: In total, 808 studies were screened and 151 papers from 117 studies were included for review. The top two areas of research focus included: (1) specific groups, services, and settings (n = 70); and (2) identification, communication and education (n = 37). A diverse variety of research methods were used including mixed methods (25%), surveys (22%), interviews (20%), and reviews (17%). One randomised control trial was conducted. The predominance of research papers focused solely on health care professionals (n = 35%), and the community setting was the most frequent location for data collection (41%). The majority of data was collected across the two jurisdictions of the Republic of Ireland (ROI) and Northern Ireland (NI) (37%), and 23% of studies included data outside of Ireland and the UK. The most frequent sources of funding were: consortiums (n = 40); government (n = 24); and philanthropic bodies (n = 20). Forty percent (n = 60) of papers were either unfunded or did not acknowledge a funder. Conclusions: There is a continued increase in palliative care research in Ireland with increased collaborative working nationally and internationally. The quantity and impact of research has increased from the previous review, which can be attributed to significant investment in research funding and collaborative networks. However, research gaps continue to exist including out of hours' care, physical and psychological symptom control, intervention studies, and the patient and family perspective. Areas for attention include the need to ensure knowledge exchange and demonstrate impact of the research on patient and family carer outcomes. [ABSTRACT FROM AUTHOR]

Background: Nursing homes and other long-term care services account for a disparate share of COVID-19 cases and casualties worldwide. During COVID-19 there is a distinct need to preserve a holistic view of the wellbeing of residents of nursing homes, be mindful of their rights as citizens, and to be aware of protecting residents from infection. The delivery of health and social care throughout a pandemic must remain person-centred and adhere to a human rights-based approach. Methods: This study aimed to capture nursing home residents, their families and staff's perspective of the nursing homes residents experience, approaches of staff and the nursing home environment. An online survey was distributed via stakeholder networks and online platforms across Ireland. This study was performed and reported in line with the Consensus-Based Checklist for Reporting of Survey Studies (CROSS). Results: 25 residents, 42 family members and 51 staff completed the survey (n = 118). Across the domains measured all but one aspect scored above 50% (residents get up and go to bed when they want 41.5%) with the highest score of 89.1% scored for the nursing home is comfortable and well-kept. Results highlight evidence of positive experiences and endeavours to preserve social connections, residents were in a safe place cared for by staff who did their best in a difficult position and who went above and beyond their duty of care. However, some families reported poor communication, no internet connections, not enough phones or tablets, and that staff were busy and unable at times to assist residents who needed help using phones/tablets. Conclusion: This study highlights the importance of human rights and how they ought to inform and shape the advancement of public health advice and policy documents. Overall, nursing home residents, their families and staff reported favourably on the study measures. However, issues pertaining to communication are essential and there is a need to address issues such as the provision of accurate timely information, communication infrastructure and resources, and inconsistencies in communications. Of note is that while healthcare professionals have a duty to uphold the rights of nursing home residents, they themselves have human rights which must also be protected and supported. [ABSTRACT FROM AUTHOR]

Background: Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so. Main body: An interdisciplinary workshop on "Palliative Care in Neurodegeneration, with a focus on Dementia", was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify 'gaps' for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended. Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities. Conclusions: The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area. [ABSTRACT FROM AUTHOR]

Background: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. Methods: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. Results: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. Conclusions: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society. [ABSTRACT FROM AUTHOR]

Background: The 'Let Me Decide' Advance Care Planning (LMD-ACP) programme offers a structured approach to End-of-Life (EoL) care planning in long-term care for residents with and without capacity to complete an advance care directive/plan. The programme was implemented in three homes in the South of Ireland, with a view to improving quality of care at end of life. This paper will present an evaluation of the systematic implementation of the LMD-ACP programme in the homes. Methods: Focus groups were conducted with 15 Clinical Nurse Managers and two Directors of Nursing where the programme had been implemented. A semi-structured topic guide was used to direct questions that addressed implementation process, challenges implementing advance care planning, advantages/disadvantages and recommendations for the future. Data was analysed using manifest content analysis. Results: Five key categories emerged, with 16 corresponding subcategories. These subcategories emerged as a result of 37 codes. Key benefits of the programme included enhancing communication, changing the care culture, promoting preference-based care and avoiding crisis decision making. Establishing capacity among residents and indecision were among the main challenges reported by staff. Discussion: A number of recommendations were proposed by participants and included multi-disciplinary team involvement, and a blended approach to education on the topic. According to participants relationships with residents deepened, there was a more open and honest environment with family, end of life care focused more on symptom management, comfort and addressing spiritual care needs as opposed to crisis decision making and family conflict. Conclusion: The introduction of the LMD-ACP programme enhanced the delivery of care in the long-term care sites and led to a more open and positive care environment. [ABSTRACT FROM AUTHOR]

Background: As palliative care research continues to expand across Europe, and the world, questions exist about the nature and type of research undertaken in addition to the research priorities for the future. This systematic review, which is the first stage of a larger scale study to identify the research priorities for palliative care on the island of Ireland, examined palliative care research conducted on the island over the last decade. Methods: A comprehensive search strategy was implemented and strict eligibility criteria were applied in order to identify relevant peer-reviewed journal articles. Inclusion criteria were all of the palliative care studies undertaken on the island of Ireland and published between January 2002 and May 2012. These were assessed in relation to year, setting, sample size, research methodology, and relevant findings. Results: 412 publications were identified for screening and their abstracts obtained. After eliminating articles that did not meet the inclusion criteria, 151 remained for further analysis. A thematic analysis of 128 studies published between 2006 and 2012 revealed eight core themes: (1) specific groups/populations; (2) services and settings; (3) management of symptoms (physical, psychological, social); (4) bereavement; (5) communication and education; (6) death and dying; (7) spirituality; and (8) complementary and alternative medicine/intervention (CAM). There was an upward trend in the number of publications in palliative care research over the last ten years with over 72% of studies being published within the previous four years. A slightly higher number of studies were quantitative in nature (surveys, questionnaires, standardised assessments) followed by qualitative (individual and focus group interviews, case studies, documentary analysis and retrospective case note reviews), mixed methods, and systematic reviews. Conclusions: Whilst there has been a welcome growth in palliative care research across Ireland, this has largely been needs-based and small scale studies. In contrast, international researchers and decision makers recommend the need for more outcomes focused multidisciplinary research. An examination of palliative care research is an essential first step in seeking to develop future priority areas for further research, highlighting opportunities for future collaboration both nationally and internationally. [ABSTRACT FROM AUTHOR]

Background: Many people receiving palliative care wish to die at home. Often, support from family or friends is key to ensuring that this wish is fulfilled. However, carers report feeling underprepared to undertake this role. This paper describes the process of developing a consensus and evidence based website to provide core information to help people support someone receiving palliative care on the island of Ireland. Methods: The project comprised three phases: (1) a review of systematic reviews facilitated the identification of core information needs; (2) content was developed in collaboration with a Virtual Reference Group (VRG) comprising patients, carers and professionals; and, (3) subject experts within the project team worked with a web developer to précis the agreed content and ensure it was in a format that was appropriate for a website. Members of the VRG were then invited to test and approve the website before it was made available to the general public. Results: Nineteen systematic reviews identified nine consensus areas of core information required by carers; a description of palliative care; prognosis and treatment of the condition; medication and pain management; personal care; specialist equipment; locally available support services; what to do in an emergency; nutrition; and, support for the carer. This information was shared with the VRG and used to develop website content. Conclusions: We engaged with service users and professionals to develop an evidence-based website addressing the agreed core information needs of non-professional carers who wish to provide palliative care to a friend or relative. [ABSTRACT FROM AUTHOR]

Background: Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams. Methods: A descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically. Results: Four key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services' effectiveness and value for money was highlighted. Conclusions: Management and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service. [ABSTRACT FROM AUTHOR]

Background: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland. Methods: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM). Results: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121–£190 (excluding volunteer contribution) to £172–£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: − 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: − 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: − 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis. Conclusions: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS. [ABSTRACT FROM AUTHOR]

Background: For most people, home is the preferred place of care and death. Despite the development of specialist palliative care and primary care models of community based service delivery, people who are dying, and their families/carers, can experience isolation, feel excluded from social circles and distanced from their communities. Loneliness and social isolation can have a detrimental impact on both health and quality of life. Internationally, models of social and practical support at the end of life are gaining momentum as a result of the Compassionate Communities movement. These models have not yet been subjected to rigorous evaluation. The aims of the study described in this protocol are: (1) to evaluate the feasibility, acceptability and potential effectiveness of The Good Neighbour Partnership (GNP), a new volunteer-led model of social and practical care/support for community dwelling adults in Ireland who are living with advanced life-limiting illness; and (2) to pilot the method for a Phase III Randomised Controlled Trial (RCT). Design: The INSPIRE study will be conducted within the Medical Research Council (MRC) Framework for the Evaluation of Complex Interventions (Phases 0-2) and includes an exploratory two-arm delayed intervention randomised controlled trial. Eighty patients and/or their carers will be randomly allocated to one of two groups: (I) Intervention: GNP in addition to standard care or (II) Control: Standard Care. Recipients of the GNP will be asked for their views on participating in both the study and the intervention. Quantitative and qualitative data will be gathered from both groups over eight weeks through face-to-face interviews which will be conducted before, during and after the intervention. The primary outcome is the effect of the intervention on social and practical need. Secondary outcomes are quality of life, loneliness, social support, social capital, unscheduled health service utilisation, caregiver burden, adverse impacts, and satisfaction with intervention. Volunteers engaged in the GNP will also be assessed in terms of their death anxiety, death self efficacy, self-reported knowledge and confidence with eleven skills considered necessary to be effective GNP volunteers. Discussion: The INSPIRE study addresses an important knowledge gap, providing evidence on the efficacy, utility and acceptability of a unique model of social and practical support for people living at home, with advanced life-limiting illness. The findings will be important in informing the development (and evaluation) of similar service models and policy elsewhere both nationally and internationally. Trial registration: ISRCTN18400594 18th February 2015. [ABSTRACT FROM AUTHOR]

Background: More people die in hospital than in any other setting which is why it is important to study the outcomes of hospital care at end of life. This study analyses what influenced outcomes in a sample of patients who died in hospital in Ireland in 2008/9. The study was undertaken as part of the Irish Hospice Foundation's Hospice Friendly Hospitals Programme (2007-2012). Methods: Outcomes of care were assessed by nurses, doctors and relatives who cared for the patient during the last week of life. Multi-level modelling was used to analyse how care outcomes were influenced by care inputs. Results: The sample of 999 patients represents 10% of acute hospital deaths and 29% of community hospital deaths in Ireland in 2008/9. Five care outcomes were assessed for each patient: symptom experience, symptom management, patient care, acceptability of the way patient died, family support. Care outcomes during the last week of life tended to be better when: the patient had cancer; admission to hospital was planned rather than emergency; death occurred in a single room or where privacy, dignity and environment of the ward was better; team meetings were held; there was good communication with patients and relatives; relatives were facilitated to stay overnight and were present at the time of death; nursing staff were experienced and had training in end-of-life care; the hospital had specific objectives for developing end-of-life care in its service plan. Conclusions: The study shows significant differences in how care outcomes, including pain, were assessed by nurses, doctors and relatives. Care inputs operate in a mutually reinforcing manner to generate care outcomes which implies that improvements in one area are likely to have spill-over effects in others. Building on these findings, the Irish Hospice Foundation has developed an audit and review system to support quality improvement in all care settings where people die. [ABSTRACT FROM AUTHOR]

The article focuses on the study of prevalence, clinical correlates and challenges in evaluation of autonomic dysfunction (AD) in patients with advanced cancer. Several assessments including symptom severity, autonomic function, muscle strength, anthropometric measurements, walking speed, medication use, comorbidities and demographics were done. It was concluded that autonomic dysfunction is highly prevalent in patients with advanced cancer.