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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., (© 2024. The Author(s).)

Background: Healthcare assistants working in hospice at home settings have a pivotal role in supporting people dying at home and their family caregivers. Some healthcare assistants are working alone in patients' homes, which magnifies some of the issues reported for those working closely with other team members. There is a dearth of evidence in terms of education, training and support needs for healthcare assistants when working alone., Aim: To explore the role of newly employed lone working healthcare assistants delivering palliative care in the community, and their support and educational needs., Design: Qualitative exploratory study using semi-structured interviews., Setting/participants: Healthcare assistants ( n  = 16) employed less than 12 months by a national non-profit hospice and palliative care provider located across the UK., Results: Analysis of interviews identified three main themes: (1) Healthcare assistants have a unique and complex role catering for holistic needs of patients and their family caregivers in the home environment; (2) preparation for the complex role requires focus on experiential learning and specific training to support holistic care provision; (3) lone workers experience loneliness and isolation and identify peer support as a key intervention to support their wellbeing., Conclusions: Given the complexities of their role within community palliative care teams, there are key learning points in relation to healthcare assistant preparation. Education and support networks should be prioritised to reduce isolation and support ongoing learning and development of newly employed healthcare assistants; all of which is vital to ensure safety and quality of care for the growing number of people they support in the community.

This article illustrates the completion of a scoping review of the evidence relating to the role of the palliative care key worker, providing an insight into current literature. While advocated in international and national policies, the evidence underpinning this role is lacking, with only five empirical papers: two national and three international. The review identifies the need for the key worker role in palliative care; however, little consensus exists on who should adopt this role and their remits. Several implementation barriers are cited relating to communication and training. Further research on the development, implementation and consensus on the allocation of duties of the key worker role would expand the existing evidence base.

Background: Internationally, the demand for the provision of high-quality palliative care is increasing exponentially. Japan is a rapidly ageing society and it is therefore important to understand the current context to develop practice and inform future resource allocation in long-term care facilities (LTCFs)., Aim: To describe the broad context of palliative care services, practice, education and policies in LTCFs in Japan., Methods: A process of expert elicitation and documentary review undertaken. The WHO palliative care model for public health was used as an analytical framework., Findings: Several deficits were identified regarding palliative care in Japanese LTCFs: a lack of palliative care strategy and standardised training for staff, and limited information on the use of palliative care medicines, quality improvement tools and frameworks., Conclusion: Such deficits need to be addressed to inform current nursing practice, future training needs for staff, quality care initiatives and decision making for advance care planning and resource allocation to respond to the ever-increasing demand for palliative care in these settings.

Background: Moving palliative care from a solely clinical focus to a more population based and community orientated approach is the hallmark of a much advocated public health approach to palliative care. Young adults are a vital cohort of the public, yet their understanding of palliative care has not been investigated. This study aimed to explore young adults' understanding of palliative care and identify factors that influence their engagement., Methods: A purposive sample of young adults (n = 24) aged 18-29 years were recruited from one UK University. Semi-structured interviews were undertaken face to face or via telephone or Skype between November 2017 and February 2018. Thematic analysis using a framework approach and underpinned by a socioecological perspective was used to analyse the interviews., Results: Three thematic categories were identified relating to intrapersonal and interpersonal influences, cultural and social influences and organisational and public policy influences. Palliative care was understood as supportive comfort care, delivered in the absence of cure, associated with the end of life and specifically focused on death and dying. Negative attitudes related to the context of care, which represented a static and hopeless situation. Whilst some reported positive attitudes, potential engagement was seen to be governed by a lack of knowledge and protective cultural norms. In terms of demonstrating readiness to engage with palliative care, participants requested clear information and suggested a normalising of palliative care through the education system., Conclusion: Young adults in this study were ready to find out more about palliative care and identified social media as a platform upon which to engage this population. However, their perception of a society that views palliative care as a subject for those directly affected, creates a barrier to engagement. This study identified the ingredients of a public health message and mediums for disseminating the message. However, findings also suggest that a cultural shift is required to recognise the potential of engaging young adults in health issues that cross the life span, empowering them not only as individuals but as vital members of community and society., (© 2021. The Author(s).)

Background: Palliative care is recognised as a public health issue with the need for earlier integration in the wider healthcare system. However, research indicates that it continues to be accessed late in the course of an illness, public understanding of palliative care is limited, and common misconceptions prevail. Strategies to address this are needed in order to reduce barriers to palliative care delivery and improve access., Methods: An explanatory sequential mixed methods study, comprising a cross-sectional survey and interviews was undertaken. Sociodemographic characteristics, public awareness, knowledge and perceptions of palliative care were examined and strategies to raise awareness and overcome barriers within a public health framework were identified. Survey data were analysed using SPSS v25 with factor analysis and non-parametric statistics and qualitative data were analysed using thematic analysis., Results: A total of 1201 participants completed the survey (58.3% female, mean age 61 years) and 25 took part in interviews. A fifth of participants (20.1%) had previously heard about palliative care and had an accurate understanding of the term. Being female, higher educated, married, and older, increased respondents' levels of awareness. The three most commonly held misconceptions included: Palliative care is exclusively for people who are in the last 6 months of life (55.4% answered incorrectly); A goal of palliative care is to address any psychological issues brought up by serious illness (42.2% answered incorrectly); and a goal of palliative care is to improve a person's ability to participate in daily activities (39.6% answered incorrectly). Talking about palliative and end of life care was advocated but societal taboos restricted this occurring with exposure limited to personal experience., Conclusions: Current knowledge gaps and misconceptions derived from limited ad hoc personal experiences and fear of engaging in taboo conversations may deter people from accessing integrated palliative care services early in a disease trajectory. The results indicate the need for public education programmes that move beyond merely raising awareness but provide key messages within a public health approach, which may change attitudes to palliative care thus ultimately improving end of life outcomes.

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.

Background: Given the increase in the number of deaths within long-term care facilities (LTCFs), the need for palliative and end-of-life (EOL) care education among such facilities has been increasing. As such, a systematic synthesis of global palliative and EOL care educational approaches and evaluation can aid further educational development., Objective: To synthesise the current literature on palliative and EOL care educational interventions for staff working in LTCFs and identify barriers to, and facilitators of, intervention implementation., Methods: The study used an integrative review framework wherein indexed databases, namely, CINAHL, EMBASE, MEDLINE, PsycINFO, Web of Science, Cochrane Library and Japan Medical Abstract Society, were systematically searched for studies published in English and Japanese between 2007 and 2019. Search terms that are related to palliative care, LTCF, and education were combined to increase search sensitivity. The quality of the papers was assessed using Joanna Briggs Institute Critical Appraisal Tools and the Mixed-Methods Appraisal Tool., Results: A total of 52 studies were included in the review. Our results suggested that although studies in this area and setting have been evolving, suboptimal developmental research and educational practices, global variability and unstandardised approaches to education and lacking viewpoints from service users have remained. Barriers to intervention implementation were also reported due to the specific characteristics of LTCFs, which include high staff turnover and considerable variation in professional skills and experience., Conclusions: Given the different LTCF types, systems and policies across each country or region, further research on standardised educational interventions with contextual considerations using large-scale studies with robust methodology is needed to meet the increasing demand for palliative and EOL care among the global ageing population., Implications for Practice: Palliative and EOL care educational intervention for LTCF staff need to include more consideration of context, organisational culture and the user involvement throughout the process of education and research to enhance the quality of care in this complex setting., (© 2020 The Authors. International Journal of Older People Nursing published by John Wiley & Sons Ltd.)

Background: There has been increasing evidence and debate on palliative care research priorities and the international research agenda. To date, however, there is a lack of synthesis of this evidence, examining commonalities, differences, and gaps. To identify and synthesize literature on international palliative care research priorities originating from Western countries mapped to a quality assessment framework., Methods: A systematic review of several academic and grey databases were searched from January 2008-June 2019 for studies eliciting research priorities in palliative care in English. Two researchers independently reviewed, critically appraised, and conducted data extraction and synthesis., Results: The search yielded 10,235 articles (academic databases, n = 4108; grey literature, n = 6127), of which ten were included for appraisal and review. Priority areas were identified: service models; continuity of care; training and education; inequality; communication; living well and independently; and recognising family/carer needs and the importance of families. Methodological approaches and process of reporting varied. There was little representation of patient and caregiver driven agendas. The priorities were mapped to the Donabedian framework for assessing quality reflecting structure, process and outcomes and key priority areas., Conclusions: Limited evidence exists pertaining to research priorities across palliative care. Whilst a broad range of topics were elicited, approaches and samples varied questioning the credibility of findings. The voice of the care provider dominated, calling for more inclusive means to capture the patient and family voice. The findings of this study may serve as a template to understand the commonalities of research, identify gaps, and extend the palliative care research agenda.

Background: Constipation is a common symptom for patients receiving palliative care. Whilst international clinical guidelines are available on the clinical management of constipation for people with advanced cancer receiving specialist palliative care (SPC), the extent to which the guidelines are implemented in practice is unclear. This study aimed to examine clinical practices for the assessment and management of constipation for patients with advanced cancer within inpatient SPC settings., Methods: A multi-site retrospective case-note review was conducted, consisting of 150 patient case-notes from three inpatient SPC units across the United Kingdom between August 2016 and May 2017. The variables selected for review were determined by the recommendations within the clinical guidelines. Descriptive statistics, cross tabulation, chi square, and bivariate correlations were used to examine clinical practices compared to policy guidelines for the assessment and management of constipation. Reporting was structured by the STROBE checklist for observational research (Additional File 2)., Results: A comprehensive assessment, including a full history and performing a physical exam, was recorded for 109 patients (73%), however, no standardised documentation was utilised. Assessment was nurse led, with variable involvement across sites of other members of the multidisciplinary team (MDT). Education on prevention was documented in 30 (20%) case-notes, and 53% recorded evidence of non-pharmacological intervention. Age, gender, and reason for admission did not impact on the likelihood of receiving a comprehensive assessment, education, or non-pharmacological intervention, however, significant differences were evident between sites. Pharmacological management was well developed and aligned to the guidelines however, 33% of patient case-notes recorded no information on the titration of laxatives. Twelve percent of patients experienced partial or complete bowel obstruction, and management strategies were variable., Conclusions: Constipation management is driven by a pharmacological approach, with little evidence of the implementation of preventative and non-pharmacological strategies. The nurse plays a key coordinating role in assessment; however, involvement and roles of the wider MDT varies. Accurate recording of care is essential when examining clinical practice and identifying areas for improvement. Further education is needed to equip HCPs with the knowledge and skills to ensure consistency in assessment and implementation of appropriate non-pharmacological/ preventative strategies.

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.

Background: Constipation is an important issue for patients receiving palliative care within specialist palliative care settings. Questions and ambiguity, however, persist about international best practice and management., Aim: To synthesise the current evidence base on the assessment and management of constipation for palliative care patients within a specialist palliative care setting., Design: This is a systematic review., Data Sources: MEDLINE, Embase, CINAHL, Scopus and Cochrane databases were systematically searched in April 2017 for empirical studies, written in English, on the assessment and management of constipation in specialist palliative care settings, published between 2007 and 2017. Two researchers independently reviewed and critically appraised all studies, conducted data extraction, and undertook a thematic analysis., Results: In total, 13 studies were included in the review comprising randomised trials ( n = 3), observational ( n = 4) and descriptive studies ( n = 6). Most research was conducted in specialist palliative care units, targeting either healthcare professionals or patients. The analysis highlighted a lack of standard definition of constipation, raising questions on the existence and comparability of baseline prevalence figures, the physical and psychological impact on patients, resource impact on staff and service, the subjective and objective methods of assessing constipation, and key aspects of constipation management, including a lack of focus on non-pharmacological management in this setting., Conclusion: The results of this review are being used to inform the development of an educational intervention targeting healthcare professionals. Gaps in the evidence base include lack of consistent definition of constipation, constipation prevention, non-pharmacological management, and the consideration of the management of constipation for the dying patient.

Background: Globally recommended in healthcare policy, Shared Decision-Making is also central to international policy promoting community palliative care. Yet realities of implementation by multi-disciplinary healthcare professionals who provide end-of-life care in the home are unclear., Aim: To explore multi-disciplinary healthcare professionals' perceptions and experiences of Shared Decision-Making at end of life in the home., Design: Qualitative design using focus groups, transcribed verbatim and analysed thematically., Setting/participants: A total of 43 participants, from multi-disciplinary community-based services in one region of the United Kingdom, were recruited., Results: While the rhetoric of Shared Decision-Making was recognised, its implementation was impacted by several interconnecting factors, including (1) conceptual confusion regarding Shared Decision-Making, (2) uncertainty in the process and (3) organisational factors which impeded Shared Decision-Making., Conclusion: Multiple interacting factors influence implementation of Shared Decision-Making by professionals working in complex community settings at the end of life. Moving from rhetoric to reality requires future work exploring the realities of Shared Decision-Making practice at individual, process and systems levels.

This paper provides an overview of the evidence on the perspective of health care professionals (HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term care settings. A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search identified 14 papers for inclusion. Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training. Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice.

Aims and Objectives: To evaluate a holistic assessment tool for palliative care practice. This included identifying patients' needs using the holistic tool and exploring the usability, applicability and barriers and facilitators towards implementation in practice., Background: The delivery of effective holistic palliative care requires a careful assessment of the patients' needs and circumstances. Whilst holistic assessment of palliative care needs is advocated, questions exist around the appropriateness of tools to assist this process., Design: Mixed-method research design., Methods: Data collection involved an analysis of piloted holistic assessments undertaken using the tool (n = 132) and two focus groups with healthcare professionals (n = 10)., Results: The tool enabled health professionals to identify and gain an understanding of the needs of the patients, specifically in relation to the physical healthcare needs. Differences, however, between the analysis of the tool documentation and focus group responses were identified in particular areas. For example, 59 (68·8%) respondents had discussed preferred priorities of care with the patient; however, focus group comments revealed participants had concerns around this. Similarly, whilst over half of responses (n = 50; 57·5%) had considered a prognostic clinical indicator for the patient as an action, focus group results indicated questions around healthcare professionals' knowledge and perceived usefulness of such indicators. Positive aspects of the tool were that it was easy to understand and captured the needs of individuals. Negative aspects of the tool were that it was repetitive and the experience of assessors required consideration., Conclusion: The tool evaluation identified questions regarding holistic assessment in palliative care practice and the importance of communication., Relevance to Clinical Practice: A holistic assessment tool can support patient assessment and identification of patients' needs in the 'real world' of palliative care practice, but the 'tool' is merely an aid to assist professionals to discuss difficult and sensitive aspects of care., (© 2013 John Wiley & Sons Ltd.)

Background: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public's understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice., Aim: To explore public perceptions of palliative care and identify strategies to raise awareness., Design: An exploratory qualitative approach., Participants: Semi-structured telephone interviews were undertaken (N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed., Results: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participant's expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies., Conclusion: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.

Aim: To explore district nurses' beliefs regarding referral of a patient receiving palliative care for physiotherapy., Method: Three focus groups, guided by the Theory of Planned Behaviour, were undertaken with a purposive sample of 16 district nurses. All were audio-recorded, transcribed, and subject to content analysis., Results: Nine beliefs were identified as influencing referral decisions, the majority of which were negative, such as the belief that physiotherapists lack palliative care skills and could foster false hope. Additional barriers to referral included a lack of contact and communication with physiotherapists, poor knowledge or experience of physiotherapy, unsuitable referral systems, and poor availability of services., Conclusion: These findings help to explain why so few patients receiving palliative care access rehabilitation services. To ensure that patients have appropriate access to palliative rehabilitation, there needs to be consideration of how the identified barriers can be overcome.

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n = 17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services.

Although most people with Parkinson's disease are cared for in the community, little is known about family members' lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers' lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson's disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson's disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson's. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson's disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.

Aim: This study explored the experiences of palliative care that bereaved carers had while providing care to a dying loved one with chronic obstructive pulmonary disease (COPD)., Method: Semi-structured interviews were undertaken with nine carers who had lost a loved one in the preceding 6 to 24 months. These interviews explored levels of satisfaction with disease management, symptom management, and end-of-life care. With permission, interviews were tape recorded, transcribed, and subjected to content analysis., Findings: Three themes emerged from the data: the impact of the caring experience, the lack of support services, and end-of-life and bereavement support. Carers experienced carer burden, lack of access to support services, a need for palliative care, and bereavement support., Conclusion: The findings provide a first insight into the experiences of carers of patients with advanced COPD. Bereaved carers of patients who had suffered advanced COPD reported that they had received inadequate support and had a range of unmet palliative care needs. Special attention should be paid to educating and supporting carers during their caring and bereavement periods to ensure that their quality of life is maintained or enhanced.

Aim: This paper is a report of a study to explore link nurses' views and experiences regarding the development, barriers and facilitators to the implementation of the role in palliative care in the nursing home., Background: The delivery of palliative care in nursing homes is widely advocated; one approach is to develop the link nurse role to cascade good practice and training to nurses and other care staff to enhance patient care., Method: A descriptive qualitative study was conducted with a purposive sample of 14 link nurses from 10 nursing homes in Northern Ireland during 2006. Three focus groups, composed of all Registered Nurses currently acting as link nurses in their nursing homes participated, and the data were audio recorded, fully transcribed and content analysed., Findings: The link nurse system shows potential to enhance palliative care within nursing homes. However, link nurses experienced a number of difficulties in implementing education programmes. Facilitators of the role included external support, monthly meetings, access to a resource file and peer support among link nurses themselves. Lack of management support, a transient workforce and lack of adequate preparation for link nurses were barriers to fulfilling this role., Conclusion: Whilst palliative care link nurses can improve care for residents in nursing homes, consideration must be given to overcome the types of barriers identified in order to enable the link nurse system to function effectively.

It has long been recognised that the majority of care provided in chronic illness comes not from health and social care professionals, but from family and friends. One such illness is chronic obstructive pulmonary disease (COPD), a leading cause of morbidity and mortality in the developed world.To explore the specific care needs of informal caregivers of patients with advanced COPD, interviews were conducted with seven active family caregivers. Interviews were taped, transcribed and content analysed to obtain the caregivers' needs. Results confirm that family caregivers provide direct care with little support and assistance. Participants reported restricted activities of daily living and some emotional distress. There were knowledge deficiencies among caregivers relating to the COPD illness trajectory and little awareness of the potential of palliative care. Family caregivers need social and professional support while caring for a patient at home. This would help to ensure that their physical and emotional health does not suffer. There is a need to devise interventions to ensure family caregivers are supported.

Palliative care encompasses spiritual as well as physical, social and psychological aspects. Spiritual care has been identified as a key concern of dying patients. During an audit of the Northern Ireland Hospice chaplaincy service against the national Standards for Hospice and Palliative Care Chaplaincy (2003), 62 patients' spiritual needs along with their interactions with the hospice chaplains were assessed by using a questionnaire survey and reviewing data recorded on their pastoral care notes. Findings suggest that the Standards were useful for assessing and addressing spiritual needs. Access to the chaplaincy service (Standard 1) was partially met and Standard 2's spiritual criteria were fully met. The participants, of whom 92% had a faith in God or a Higher Being, highlighted their top six spiritual needs as: to have the time to think; to have hope; to deal with unresolved issues; to prepare for death; to express true feelings without being judged; to speak of important relationships. The majority of the participants (82%) felt their spiritual needs had been addressed and viewed their interaction with the chaplaincy service positively. Recommendations were made relating to improve communication of chaplaincy services.

Background: Palliative care is delivered in a number of settings, including nursing homes, where staff often have limited training in palliative care., Aim: We explored the level of palliative care knowledge among qualified staff delivering end-of-life care in nursing home settings, to inform the development of an appropriate education and training programme., Design: An audit of the educational needs assessment was performed using an anonymous postal questionnaire sent to 528 qualified nursing staff within 48 nursing homes., Findings: In total, 227 questionnaires were returned giving a response rate of 43%. Results indicated that less than half the sample had obtained formal training in the area of pain assessment and management and less than a quarter had obtained training in non-malignant conditions. Registered nurses in this study reported a lack of awareness of palliative care principles or national guidelines., Conclusion: Qualified nursing home staff agree that palliative care is a valuable model for care in their setting. There are clear opportunities for improvement in nursing home care, based on education and training in palliative care. Results also support the need for enhanced liaison between nursing homes and specialist palliative care services.

Day hospice allows patients to remain living at home while attending a specialist palliative care center. This paper describes patient feedback (n=26) on medical, social and therapeutic out-patient palliative care services provided at one such facility in Northern Ireland. Medical records of all attending patients (n=50) were reviewed, and patients completed a semi-structured questionnaire. Patients' comments on day hospice were largely positive. A number of suggestions for new service activities were made, and the need for education of multi-professional team members was recognized. Respondents recognized that day hospice allowed respite care for the family. Patients were very appreciative of the care that was offered--their concern for its continuance perhaps restraining any criticism they had. Such findings provide the opportunity for health professionals to gain further insights into day care to better meet patients' needs.

Aim: this study surveyed a representative sample of district nurses (DNs) to ascertain their experience of working alongside a HAH service., Method: a self-completed postal questionnaire comprised of 14 items was distributed to 128 DNs., Results: the evaluation found significant levels of satisfaction. All respondents indicated that they would refer a patient to the service again. However, the need for improved communication and increased awareness among DNs about the HAH service were also identified., Conclusion: the findings support the idea that a HAH service can enable patients with advanced progressive disease to be cared for at home. While the findings of this study cannot be generalized, they add to the growing body of research about HAH services in palliative care.

Long-term care facilities are increasingly important places for palliative and end-of-life care provision in Japan. While the importance of culture has been noted for palliative and end-of-life care, an exploration of its influence on care provision in long-term care settings has received little direct attention in Japan. Exploring staff views and beliefs in palliative and end-of-life care in these settings can potentially enhance our understanding of culturally oriented care and facilitate the development of tailored and more effective support practices. This study aimed to explore the cultural views and beliefs regarding palliative and end-of-life care among the staff in Japanese long-term care facilities. A qualitative exploratory study was conducted using focus groups with facility staff (N = 71) and semi-structured interviews with facility managers (N = 10) in the Kanto region of Japan. Thematic analysis was conducted according to Braun and Clarke's approach. The findings are presented in five key themes: 'Changes in society's and family's end-of-life perspectives', 'Values and beliefs regarding death and dying', 'Anxiety and regret', 'Tensions in doing the right thing' and 'Ways of alleviating pressure'. The findings indicate that the provision of palliative and end-of-life care is underpinned by cultural nuances that influence care providers' approach and delivery. Recognising and understanding the cultural beliefs of staff around death, dying and end-of-life care are important in meeting the needs of residents. Palliative care education for staff in these settings should include cultural considerations that reflect changing societal views on death and dying. [ABSTRACT FROM AUTHOR]

Background: Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care. Aim: The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices. Methods: Survey questionnaires were emailed to 150 adult hospices in the UK. Quantitative data were analysed using SPSS and qualitative data subjected to thematic analysis. Findings: Responding hospices (n=57) provided the following types of support: telephone advice 72% (n=41); care at home 70% (n=40); and rapid response 35% (n=20). There were variations between services regarding referral mechanisms, availability and workforce, and integration with statutory services was limited. Conclusion: Variation in the type of provision and delivery of out-of-hours palliative care services alongside limited integration with statutory care have contributed to inequity of access to community-based palliative care, and potentially suboptimal patient and informal caregiver outcomes. [ABSTRACT FROM AUTHOR]

Background: Globally, initiation of paediatric advance care planning discussions is advocated early in the illness trajectory; however, evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional. Method: Underpinned by the Capability, Opportunity, Motivation–Behaviour (COM‐B) model for behaviour change, a cross‐sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open‐ended questions were mapped and correlations between COM‐B and demographic profiles identified. Results: Responses (n = 140): Paediatric advance care planning was viewed positively; however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. Whilst some tools and protocols exist, they were not used in a systematic manner, and initiation behaviour was often not guided by them. Initiation was unstandardized, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (opportunity). There was no difference in Motivation between professions, clinical settings or specialisms, although 25% (n = 35) of responses indicated discomfort discussing death and 34% (n = 49) worried about families' emotional reaction. Conclusion: Although advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM‐B framework was useful in identifying fundamental differences in initiation behaviour; however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation. [ABSTRACT FROM AUTHOR]

Background: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often avoid or delay initiation. An overview of evidence on the factors that influence and impact on the health care professional's initiation of paediatric advance care planning process is lacking. Aim: To review and synthesise evidence on the factors associated with health care professional's decision to initiate paediatric advance care planning. Design: Systematic integrative review using constant comparison method. Data Sources: Electronic databases (CINAHL, PubMed, PsycINFO, Ovid MEDLINE, EMBASE, Web of Science and Cochrane) using MeSH terms and word searches in Oct 2019. No limit set on year of publication or country. Grey literature searches were also completed. Results: The search yielded 4153 citations from which 90 full text articles were reviewed. Twenty-one met inclusion criteria consisting of quantitative (n = 8), qualitative (n = 6) and theoretical (n = 7) studies. Findings revealed overarching and interrelated themes ' The timing of initiation', 'What makes an initiator, 'Professionals' perceptions' and 'Prerequisites to initiation'. Conclusions: This review provides insights into the complexities and factors surrounding the initiation of advance care planning in paediatric practice. Uncertainty regarding prognosis, responsibility and unpredictable parental reactions result in inconsistent practice. Future research is required to inform intervention to assist health care professionals when initiating paediatric advance care planning conversations. [ABSTRACT FROM AUTHOR]

Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Design: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Setting/participants: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Results: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Conclusion: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this. [ABSTRACT FROM AUTHOR]

Background: Access to community palliative care 'out-of-hours' – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution. Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care. Design: Scoping review Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement. Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient's and family's physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home. Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers. [ABSTRACT FROM AUTHOR]

Background: An empirical social research approach, facilitating in-depth exploration of complex, contemporary contextualised phenomena, case study research has been used internationally in healthcare studies across clinical settings, to explore systems and processes of care delivery. In the United Kingdom, case study methods have been championed by nurse researchers, particularly in the context of community nursing and palliative care provision, where its applicability is well established. Yet, dogged by conceptual confusion, case study remains largely underutilised as a research approach. Method: Drawing on examples from nursing and palliative care studies, this paper clarifies case study research, identifies key concepts and considers lessons learned about its potential for nursing research within the unique and complex palliative and end of life context. Conclusion: A case study approach offers nurse researchers the opportunity for in-depth, contextualised understanding of the systems and processes which influence their role in palliative care delivery across settings. However, philosophical and conceptual understandings are needed and further training in case study methodology is required to enable researchers to articulate and conduct case study. [ABSTRACT FROM AUTHOR]

Background: The World Health Organisation recognises palliative care as a global public health issue and this is reflected at strategic level. Despite this, palliative care may not be universally welcomed. Surveys over the last decade have suggested that the general public have a lack of knowledge and negative perceptions towards palliative care. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. The aim of this study was to establish the current levels of awareness and attitudes towards palliative care among the general public in Northern Ireland. Methods: A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate. Results: A total of 600 responses were obtained (response rate 17%). Responses indicated limited knowledge about palliative care. Female gender and previous experience influenced awareness in a positive direction. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. Findings reveal the preferred place of care was the family home. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A number of strategies to enhance awareness, access and community involvement in palliative care were suggested. Conclusions: Public awareness of the concept of palliative care and of service availability remains insufficient for widespread effective and appropriate palliative care to be accepted as the norm. In particular, those without previous family-related experiences lack awareness. This has implications for palliative care service provision and policy. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to realise the objectives contained within international strategies for palliative and end-of-life care. [ABSTRACT FROM AUTHOR]

Aims: Allied health professionals (AHPs) have a key role in the delivery of palliative care through rehabilitation. However, evidence suggests that rehabilitation remains an area of neglect in palliative care. This study explores the views of allied health professionals in delivering rehabilitation in palliative care to people with Parkinson's disease. Methods: Twelve allied health professionals, from both generalist and specialist settings, who had experience of working with people with advanced Parkinson's disease and/or palliative care took part in interviews and/or focus groups. Findings: Participants viewed palliative care as holistic care, however, the rehabilitation care they provided was impeded by a number of personal and organisational barriers, and negative perceptions. Misconceptions as to the value of rehabilitation in the palliative stage and a lack of training resulted in uncertainty as to when and how it could be introduced. While the importance of early referral to AHP rehabilitation services was highlighted, organisational and administrative barriers prevented many people from accessing such care. Conclusions: Many health professionals have a role in palliative rehabilitation, but barriers prevent early referral and ongoing access to such services. There is a need to educate professionals in the principles of palliative rehabilitation, combined with providing targeted resources to promote shared care and responsibility. [ABSTRACT FROM AUTHOR]

Aim. To explore the level of palliative care knowledge and to identify educational needs of care assistants (CAs) working within a nursing home context. Background. In the United Kingdom (UK) many patients at the end-of-life are admitted to (or reside in) nursing homes, where they receive care from unqualified CAs who have little formal training. Mandatory training in specific skills to meet palliative care needs are absent. Method. Questionnaire to CAs in 48 of 91 private nursing homes in one UK region. Findings. A population of 1135 CAs were targeted with a response rate of 45% ( n = 508). A high proportion of CAs in this sample required information about the philosophy and principles of palliative care. Results support the need for an educational initiative to improve palliative care in nursing homes. Conclusion. Although recognized as a common place of death for older people, CAs are often unprepared to provide end-of-life care to nursing home residents. It is recommended that attention be given towards developing the skills and knowledge of this staff group. [ABSTRACT FROM AUTHOR]

Hospice at home (HAH) services complement the role of the district nursing team, providing 24-hour palliative home care. However, little is known about district nurses' experience or perceptions of working alongside the HAH service. This study surveyed a representative sample of district nurses (DNs) to ascertain their experience of working alongside an HAH service. A self-completed postal questionnaire comprised of 14 items was distributed to 128 DNs. The evaluation found significant levels of satisfaction. All respondents indicated that they would refer a patient to the service again. However, the need for improved communication and increased awareness among DNs about the HAH service were also identified. The findings support the idea that an HAH service can enable patients with advanced progressive disease to be cared for at home. While the findings of this study cannot be generalized, they add to the growing body of research about HAH services in palliative care. [ABSTRACT FROM AUTHOR]