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Background: There is a paucity of evidence regarding the contribution of generalist community nursing to palliative care. Aim: The aim of this study was to identity the proportion of patients referred to a generalist community nursing service who meet the criteria for palliative care need and explore key aspects of their management. Methods: A retrospective case note review of people known to a generalist community nursing service was undertaken to identify people with palliative care needs. Results: Of the 1284 people enrolled in the community nursing service, 21.1% (n=271) were identified as having palliative care needs, of which most (82.7%; n=224) had a non-cancer illness. However, palliative care need was largely unrecognised in the referrals to community nursing and there was little evidence of a palliative approach being integrated into nursing care. Conclusions: Nursing has a significant role in the provision of generalist palliative care in the community. However, research is needed to identify the barriers community nurses experience identifying needs and providing palliative care. A focus on education and support in implementing screening tools, which may assist community nurses in recognising needs and delivering palliative in the generalist setting, is urgently needed.

To explore patient and family perceptions of rapport in interactions with health professionals and use the findings to develop a conceptual definition of rapport.We undertook a qualitative Interpretive Description study; semi-structured interviews were conducted between November 2020 and May 2021. Participants included 18 patients and 11 family members recruited using a random approach from four hospice locations in Aotearoa, New Zealand. Interviews were audio recorded, transcribed, and analysed to develop a conceptual definition of rapport using guidelines (Podsakoff et al., (2016). A COREQ checklist was completed.Four dimensions of rapport were identified which formed the basis of a conceptual definition: 1) the type of relating, 2) the essence of rapport experienced, 3) key communication characteristics, and 4) the effect on interactions.Based on patient and family experiences of rapport, this study formulated a conceptual definition of rapport. This definition will support clinical education and practice and inform future research related to rapport.A conceptual definition of rapport can provide clarity for both research and clinical practice. It may be used as a tool for health professionals to reflect upon their experiences with rapport and develop expertise in this area.

Background: Greater emphasis on community-based care at the end of life is supported by the premise that most people want to be cared for and die at home. As such, it is important to understand the current state of palliative care nursing within an integrated generalist-specialist model of care in the community. Aim: To explore bereaved family perceptions and experiences of community nursing at the end of life, with a particular focus on service integration. Design: A qualitative study design using semi-structured telephone interviews with bereaved family. A critical realist framework was used to inform the analysis of interview data and thematic analysis of data was used to identify key themes. Setting/participants: Participants were the family carers of patients who had died within the catchment area of two large District Health Boards in Auckland, New Zealand. Results: Twenty-three participants were interviewed. Participants described their experiences of community nursing in terms of the service they provided. Hospice nursing roles were described in terms of a “talking service” and District Nursing as a “task service.” There was minimal expectation of the general practice nurse in terms of palliative care support and little evidence of service integration. Conclusion: Findings from this study support the need for a new integrated model of palliative care nursing which utilizes the unique skill set of nurses working across all community care settings including general practice, hospice and district nursing services. Accommodating different models of nursing care which can be responsive to patient need rather than limited to a defined service delivery model.

Background: In the context of a sudden or unexpected event, people with a life-limiting illness and their family caregivers may be dependent on emergency ambulance services Aim: To explore bereaved family members’ experiences of emergency ambulance care at the end of life. Design: A qualitative study using reflexive thematic analysis of data collected from semi-structured phone interviews. Setting/Participants: A purposive sample of 38 family caregivers identified from a database of deaths in Aotearoa, New Zealand. Results: Emergency ambulance personnel assist, inform and reassure patients and family caregivers managing distressing symptoms, falls, infections, unexpected events and death itself. Family members and patients are aware of the pressure on emergency services and sometimes hesitate to call an ambulance. Associating ambulances with unwanted transport to hospital is also a source of reluctance. Conclusions: The generalist palliative care provided by emergency ambulance personnel is a vital service for patients in the last year of life, and their caregivers. This must be acknowledged in palliative care policy and supported with training, specialist consultation and adequate resources.

Background: Family caregivers provide the majority of palliative care. The impact of family caregiving on employment and finances has received little research attention in the field of palliative care. Aim: The aim of this study was to explore perspectives and experiences of combining paid employment with palliative care family caregiving, and to assess the availability and suitability of employment support across three countries – the United Kingdom (UK), Aotearoa New Zealand and Canada. Design: A qualitative descriptive study design was used. Semi-structured interviews were held with 30 key informants with professional or personal experience in palliative care from the UK ( n = 15), Aotearoa New Zealand ( n = 6) and Canada ( n = 9). Interviews were recorded, transcribed and analysed using the principles of thematic analysis. Results: Four main themes were identified: (1) significant changes to working practices are required to enable end of life family carers to remain in work; (2) the negative consequences of combining caregiving and employment are significant, for both patient and carer; (3) employer support for working end of life caregivers is crucial but variable and; (4) national, federal and government benefits for working end of life family carers are necessary. Conclusion: Supporting carers to retain employment whilst providing care has potential benefits for the patient at end of life, the caregiver, and the wider economy and labour market. Employers, policymakers and governments have a role to play in developing and implementing policies to support working carers to remain in employment.

Lung cancer patients with advanced disease and no active treatment options currently face frequent follow-up visits to the outpatient clinic; associated with significant anxiety, time commitment, and costs. These visits also place considerable strain on the health system. Evidence from other population groups (including people with some cancers and chronic health conditions) suggests virtual or remote follow-up can lead to higher patient satisfaction without negatively impacting on health outcomes such as survival time. The aim of this study was to identify preferences for different surveillance protocols for people with non-curative lung cancers or mesothelioma. A three-phase co-design approach was adopted, including peg boards, semi-structured interviews and a discrete choice experiment (DCE). Findings from the DCE identified a need for reassurance, and the importance of relationship, consistency, and convenience for patients. Participants also identified that their preference for follow-up would be with an oncologist based locally at their primary care practice. Nurse-led and telehealth clinics were also considered acceptable options. Findings informed the design of a feasibility trial of a novel surveillance approach.

Background: Despite the reported importance of rapport, there are knowledge gaps in the ways rapport is developed and experienced by health professionals during telehealth calls in palliative care. Aim: To gain an understanding about developing rapport during telehealth calls by exploring the experiences of health professionals in community palliative care. Design: A qualitative Interpretive Description study was conducted with semi-structured interviews and focus groups between November 2020 and May 2021. Data was audio recorded, transcribed, and analysed using Reflexive thematic analysis. A COREQ checklist was completed. Setting/Participants: Thirty-one palliative care professionals who had participated in telehealth calls were recruited from four hospice locations in Aotearoa, New Zealand. Results: There were two themes identified: (1) ‘Getting on together’, which included how rapport shows up in telehealth, with examples of calls with rapport and without rapport, and (2) ‘Rapport is a soft skill’, which identified health professionals using body language and listening in specific ways in telehealth, while being aware of the privacy of calls, and lack of training concerns. Conclusion: Based on health professionals experiences of rapport it was determined that rapport is vitally important in telehealth calls, as it is in-person interactions. Rapport is a soft skill that can potentially be learned, practiced and mastery developed, although rapport in each interaction is not guaranteed. Patient and family experiences of rapport in the palliative telehealth area warrants further research and there is some urgency for health professional training in telehealth interpersonal skills.

This study explored sport and physical activity-related outcomes associated with participation in intentionally designed youth Sport For Development programming and tested the hypothesis that program participation would be associated with significant increases in physical activity and physical literacy over a two-year period among youth aged 6 - 12 who faced barriers to positive development. 93 youth were recruited from registered Sport For Development programs and participated in this repeated-measures quasi-experimental study. Our findings suggest that intentionally designed and strategically resourced youth SFD programming is associated with significant increases in physical activity and physical literacy (F (2, 133) = 5.133, p iod, with comparable increases across demographic groups and the most growth observed from baseline to 6 months. These are novel findings in the Sport for Development literature, which has primarily focused on social and affective youth outcomes. A rich and detailed description of the intervention and discussion of programmatic and non-programmatic factors and temporal and equity considerations impacting outcomes offer transferable insights for sport practitioners and researchers.

Regular physical activity significantly improves health outcomes, yet rates of childhood physical activity remain alarmingly low. Physical literacy has been identified as the foundation for quality physical education, suggesting that sport, education, and public health interventions should seek to increase physical literacy to promote physical activity. A two-week day camp program for children aged 6–10 facing barriers to positive development, was developed and delivered by a Sport for Development facility in Toronto, Canada. Utilizing fundamental movement skills (FMS) as a teaching tool and a pre- and post-assessment, the camp aimed to increase physical literacy and promote engagement in physical activity. Results indicate a significant increase in FMS (t (44) = 4.37, p < .001) as well as improved self-perceptions of physical literacy (t (40) = 14.96, p < .001). The largest FMS increases were found in running and balance and the most significant impacts were among low baseline performers.

Reflexivity is an invaluable skill for nurses and researchers, as it assists in closing the gap between research and practice and improves nursing practice. However, there is some doubt about how well reflexivity is implemented in nursing. There has also been little published showing how reflexivity can be applied in research and nursing.To provide an example of reflexivity in research to demonstrate that knowledge and experiences are transferable to nursing practice.Reflexivity is an important tool for research and nursing in finding the meeting points or interface of research and practice. This article provides an example of being reflexive that identified how the research skills of 'listening to understand' and 'finding meaning' filtered into nursing practice.Reflexivity helped to generate knowledge about research skills filtering across a research project into clinical practice. Being reflexive as a researcher and a nurse can transform the care of patients and families.This article provides an example of how reflexivity can be applied to research and nursing practice. It also suggests reframing the gap between research and practice as an interface between the two. This could encourage nurses to think of research skills and knowledge as transferable into real-time nursing practice.

Objective: To explore lung cancer patient’s experiences of telehealth during COVID-19 restrictions.Methods: 30 patients with lung cancer were recruited. Data was collected using a qualitative exploratory design with semi-structured interviews. Transcripts were thematically coded using NVivo software.Results: Five key themes were identified. Maintaining resilience: participants acknowledged they were self-reliant prior to their diagnosis, and that the sense of their own internal capabilities was a source of comfort for them; Importance of pre-established relationships with healthcare professionals: the sense of connection established prior to the telehealth consultation supported participants to engage with healthcare professionals. The need for connectedness was amplified by a sense of isolation. Seeking help: participants sought help from services that they perceived as being “expert”; Convenience: factors such as costs and saving time were highlighted; Preferences for consultation type: majority of participants identified physical and emotional comfort being in their own space. For a small number of patients, continuing a face to face assessment was important due to expectation based on previous experience. Conclusion: The use of telehealth was supported during the management of COIVD-19. Connectedness and convenience were key to the level of comfort and confidence for patients with lung cancer using telehealth during ‘lockdown’.

In industrialised countries, a large number of older adults with increasingly complex end of life care needs will die while in long-term care. It is essential that processes be in place to facilita...

Background An urgent need to improve palliative care in hospital has been identified. Moreover, service users consistently report care delivered by nurses in hospital as lacking compassion. Compassion is a fundamental component of nursing care, and promoting compassionate care has been identified as a policy priority in many countries. To help address this within the hospital context, we recently completed research exploring bereaved family experiences of good end of life care in hospital. We found that family accounts of good care aligned with Nolan and Dewar's compassionate care framework and subsequently extended the framework to the bi-cultural context of Aotearoa, New Zealand. Aims and objectives In this discussion paper, we explore synergies between our newly developed Kapakapa Manawa Framework: a bi-cultural approach to providing compassionate care at the end of life and the Fundamentals of Care. We argue that our framework can be used to support the implementation of the relational component of the Fundamentals of Care and the delivery of compassionate nursing practice in hospitals in Aotearoa, New Zealand. Design Discussion paper. Methods Review of relevant literature and construction of two vignettes describing good end of life care from the perspectives of bereaved family-one Māori and one non-Māori. The vignettes provide practical examples of how the values of the Kapakapa Manawa Framework can be enacted by nurses to provide compassionate care in alignment with the relationship component of the Fundamentals of Care. Conclusions Whilst the Kapakapa Manawa bi-cultural compassionate care framework has grown out of research conducted with people nearing the end of their lives, it has the potential to improve nursing care for all hospital inpatients. Relevance to clinical practice Addressing the wider policy and health system factors detailed in the Fundamentals of Care will support its implementation in the clinical setting.

Background: Hospitals are important sites of end-of-life care, particularly for older people. A need has been identified to understand best practice in hospital end-of-life care from the service-user perspective. Aim: The aim of this study was to identify examples of good care received in the hospital setting during the last 3 months of life for people dying in advanced age from the perspective of bereaved family members. Design: A social constructionist framework underpinned a qualitative research design. Data were analysed thematically drawing on an appreciative enquiry framework. Setting/participants: Interviews were conducted with 58 bereaved family carers nominated by 52 people aged >80 years participating in a longitudinal study of ageing. Data were analysed for the 21 of 34 cases where family members were ‘extremely’ or ‘very’ satisfied with a public hospital admission their older relative experienced in their last 3 months of life. Results: Participants’ accounts of good care aligned with Dewar and Nolan’s relation-centred compassionate care model: (1) a relationship based on empathy; (2) effective interactions between patients/families and staff; (3) contextualised knowledge of the patient/family; and (4) patients/families being active participants in care. We extended the model to the bicultural context of Aotearoa, New Zealand. Conclusion: We identify concrete actions that clinicians working in acute hospitals can integrate into their practice to deliver end-of-life care with which families are highly satisfied. Further research is required to support the implementation of the relation-centred compassionate care model within hospitals, with suitable adaptations for local context, and explore the subsequent impact on patients, families and staff.

Background Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. Results The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. Conclusions Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving.

Objective To explore lung cancer patient's experiences of telehealth during COVID-19 restrictions. Methods Thirty patients with lung cancer were recruited. Data was collected using a qualitative exploratory design with semi-structured interviews. Transcripts were thematically coded using NVivo software. Results Five key themes were identified: maintaining resilience, participants acknowledged that they were self-reliant prior to their diagnosis and that the sense of their own internal capabilities was a source of comfort for them; importance of pre-established relationships with healthcare professionals, the sense of connection established prior to the telehealth consultation supported participants to engage with healthcare professionals where the need for connectedness was amplified by a sense of isolation; seeking help, participants sought help from services that they perceived as being "expert"; convenience, factors such as costs and saving time were highlighted; and preferences for consultation type, majority of participants identified physical and emotional comfort being in their own space. For a small number of patients, continuing a face-to-face assessment was important due to expectation based on previous experience. Conclusion The use of telehealth was supported during the management of COVID-19. Connectedness and convenience were key to the level of comfort and confidence for patients with lung cancer using telehealth during "lockdown."

Background Inequities in the provision of palliative care for people with cardiac disease have been well documented in the literature. Despite experiencing significant palliative care needs, those with cardiac disease are less likely to be referred to specialist palliative care services and more likely to die in a hospital when compared to those with cancer. The unpredictable trajectory of heart failure has been identified as a key barrier to providing palliative care with many people experiencing a long period of stability with appropriate medical treatment. However, as the disease progresses and cardiac function deteriorates, exacerbations of acute decompensation can lead to what is often perceived to be ‘sudden’ death. The aim of this study is to explore the impact of uncertainty on how death is remembered by bereaved family members of people with heart disease. Methods Thematic analysis of free text collected during a postal survey of bereaved family’s experiences of healthcare services in the last 3 months of life using the New Zealand version of the VOICES questionnaire was undertaken. Data was analysed using a three-dimensional conceptual framework of “scientific uncertainty”. Results Eight hundred and twenty-seven completed questionnaires were received of which 12.6% (n = 105) indicated that they had cared for someone at the end of life with cardiac disease. Experiences of uncertainty were found to have a significant impact upon bereaved family. Four key themes were identified; distrust in healthcare professionals, stories left incomplete, loss, regret and missed opportunity and disempowerment. Conclusions This study highlights the ongoing impact on bereaved family when uncertainty is not made explicit in conversations regarding end of life for people with heart disease. Timely and sensitive conversations regarding the uncertainty of when death may occur is an important factor in ensuring that bereaved family are not left with unresolved narratives. Reframing how we think and talk about uncertainty in end of life care is important, as clinicians’ uncertainties may not always reflect or match up with families’ uncertainties. Being explicit about our inability to be certain about the timing of death may thus lead to a more positive and complete experience for bereaved family.

A generalist-specialist model of palliative care is well established as a framework for the provision of community care in resource-rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross-sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3 months of life. A modified version of the Views of Informal Carers-Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi-square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty-six questionnaires were returned (response rate = 21%). Seventy per cent of people (n = 579) spent some time at home in the last 3 months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2 days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision-making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that "generalists" are willing and able to play a key role in palliative care provision needs to be further challenged.

Background The supportive hospice aged residential exchange (SHARE) is a new model of palliative care education that has been designed for residential aged care. The goal of SHARE is to help clinical staff improve palliative care within residential aged care facilities and to improve specialist palliative care nurses’ knowledge and skill to care for frail older people. Method The experiences of 18 bereaved families concerning the palliative care journey (both at the start and finish of a one-year implementation of SHARE) were explored using semi-structured interviews. Results Three themes were important to bereaved families’ experience: communication with staff, systems of care, and hospice involvement. Sub-themes indicating changes in these three components of care between the start and finish of SHARE was identified. A fourth theme highlighted challenges (relationship with GP, staff shortages, and turnover) that continued across SHARE. Conclusion Findings indicated that SHARE benefited families (improved communication and support) through the end of life journey of their relatives, but challenges remained.

Objectives To explore how interRAI assessments could be used to identify opportunities to integrate palliative care into a plan of care. Methods A population-based, cross-sectional design using unique identifiers to link deaths with a national interRAI database. Data were analysed using logistic regression models and chi-square tests. Results A total of 4869 people died over a 12-month period in one district health board area; 50.9% (n = 2478) received one or more interRAI assessments in the year before death. Diagnosis impacted on the type and timing of interRAI assessments and the recognition of end-stage disease. Conclusion People in the last year of life experience frequent interRAI assessments. There are opportunities to identify people who might benefit from a palliative care approach. Future research is needed to understand how interRAI assessors can be supported in the application of assessment items related to palliative care.

Objective Rapport is considered fundamental to clinical relationships but is a concept which is rarely defined. This review explores how rapport is defined, characterised, and operationalised in healthcare. Methods A scoping review methodology was used. Data were synthesised using thematic analysis. The review process adhered to the Preferred Reporting System for Meta-Analysis for Scoping reviews (PRISMA-ScR). Results Medline, CINAHL, and psychINFO were searched with thirty-four studies meeting inclusion criteria. Results were presented in two themes: The meanings of rapport and the implications for building rapport. Conclusions This scoping review found rapport has no commonly shared definition or conceptualisation in the reviewed research. At the same time rapport is operationalised and characterised. Factors that facilitate, and hinder rapport-building were identified. Having a consistently used definition and conceptualisation will benefit the research that is needed into patient and family experiences and outcomes of rapport. Practice implications It is crucial for health professionals to incorporate simple kind gestures into practice to facilitate rapport. Equally it is necessary for health professionals to review their practice for dismissive, avoiding behaviours that impede rapport-building and consider how they spend their time with patients.

In New Zealand, as in other industrialised societies, an ageing population has led to an increased need for palliative care services. A cross-sectional postal survey of bereaved carers was conducted in order to describe both bereaved carer experience of existing services in the last 3 months of life, and to identify factors associated with overall satisfaction with care. A self-complete questionnaire, using a modified version of the Views of Informal Carers - Evaluation of Services (VOICES) instrument was sent to 4,778 bereaved carers for registered deceased adult (>18yrs) patients in one district health board (DHB) for the period between November 2015 and December 2016. Eight hundred and twenty-six completed questionnaires were returned (response rate = 21%). The majority of respondents (83.8%) rated their overall satisfaction with care (taking all care during the last 3 months into account), as high. However, satisfaction varied by care setting. Overall satisfaction with care in hospice was significantly higher compared to other settings. Additionally, patients who died in hospice were more likely to be diagnosed with cancer and under 65 years of age. The factors associated with overall satisfaction with care in the last 2 days of life were: caregiver perceptions of treatment with dignity and respect; adequate privacy; sufficient pain relief and decisions in line with the patient's wishes. A more in-depth exploration is required to understand the quality of, and satisfaction with, care in different settings as well as the factors that contribute to high/low satisfaction with care at the end-of-life.

Introduction Staff in residential aged care (RAC) face increasing exposure to death and dying provoking coping-related responses. This study reports on research exploring the role of religious/spiritual belief in staff coping with death and dying in RAC homes. Method Utilising a mixed methods, concurrent triangulation design, data from interviews and questionnaires with 113 RAC staff were analysed to explore the relationship between staff members’ religious/spiritual beliefs and coping with resident deaths within the context of 50 RAC facilities. Results Participants appeared to have distinctly different experiences of the role of religious/spiritual beliefs in their attitudes toward death and dying – as reflected linguistically in how they described it. Strong religious/spiritual influence and religious affiliation were associated with lower scores for burnout. Level of religious/spiritual influence does make a difference in the strategies employed by staff in coping with death and dying. Conclusion Given the potential benefits associated with religious/spiritual beliefs, RAC facility management would be well advised to foster a workplace culture that supports and encourages spiritual/religious expression among facility staff. Greater understanding of the role of religious/spiritual beliefs in helping staff to make sense of the end-of-life experience can provide the basis for the development of staff supports enabling both improved staff well-being and resident end-of-life care.

Background: Internationally, increasing attention is being paid to understanding patient experiences of health care. Within palliative care, the Views of Informal Carers – Evaluation of Services (VOICES) questionnaire is commonly used for this purpose. Among its objectives is to ask family members if their relatives were treated with dignity at the end of life. This is regarded as useful for understanding the quality of the health care received. Aim: To highlight the differences between family members' reports of dignity in the care provided to their relatives at the end of life, as reported in the VOICES questionnaire, and their narratives about the care their relatives received. Methods: A total of 21 cognitive interviews were conducted during a New Zealand pilot of the VOICES questionnaire. Results: Discrepancies between ratings of dignity and the lived experience of care suggest that lay understandings of dignity may not be congruent with that of health care providers. Conclusions: Bereaved family members' self-reports of dignity in end-of-life care captured using survey methods alone are inadequate to understand the complex ways in which individuals conceptualise and experience dignity within a health care context. The authors advocate consideration of multiple, complementary approaches to gathering consumer experiences of end-of-life care, as well as research which enables service users to interrogate what dignity in care means in an end-of-life context.

Background: Research exploring patient experience of palliative care in the hospital setting has previously been limited to negative aspects of care. However, recent studies have shown that patients with palliative care needs experience benefits being in hospital. Little is known about how experiences of benefit and burden vary according to socio-demographic and illness-related factors and how these experiences influence patient preferences to return to hospital. Aim: To identify factors influencing experiences of benefit and burden and the predictors associated with a preference to return to hospital in palliative care. Design: Cross-sectional design using a questionnaire survey. Setting/participants: In total, 116 hospital inpatients admitted with palliative care needs in an urban hospital in New Zealand. Recruitment was from an oncology ward, four general medical wards and a respiratory ward. Results: Those living in more deprived areas experienced more benefit being in hospital ( F(4, 109) = 3.15, p = 0.017), while younger people ( F(4, 109) = 4.44, p = 0.00) and those from Asian or Pacific cultures ( F(2, 111) = 7.78, p = 0.000) experienced more burden. Those with a non-cancer diagnosis felt less safe in hospital ( p = 0.04). ‘Feeling safe’ was a significant ( B = 0.14, p = 0.03) predictor for a preference to return to hospital. Conclusion: Deprivation, diagnosis, age and ethnicity influenced experiences of benefit and burden in hospital. ‘Feeling safe’ was a significant predictor for a preference to return to hospital. Further research is needed to understand why certain patient factors influence experiences of hospitalisation and how ‘feeling safe’ can be replicated in other care environments.

Research indicates that staff in aged residential care may be unprepared for their role in palliative care provision. In collaboration with a local hospice, the project piloted an innovative problem-based experiential learning intervention Supportive Hospice and Aged Residential Exchange (SHARE) to enhance aged residential care staff palliative care skills. The aim was to explore the impact of SHARE for staff. SHARE was implemented in two aged residential care facilities in one urban centre for six months. Measurement of the impact of the intervention consisted of 1) pre-test-post-test questionnaires (n = 27) to assess changes in staff confidence in palliative care delivery 2) Eleven post-intervention interviews to describe staff perceptions of SHARE. Results from the SHARE pilot indicate that the intervention overall is seen as a success, especially in relation to advanced care planning documentation. Relationships between hospice and facility staff, and consequently facility staff and residents are seen as the key to the success of the project. Staff survey results indicated increased confidence in palliative care delivery and decreased depression. Key lessons learnt from for the development of any palliative care intervention within aged residential care include the importance of reciprocal learning, as well as the necessity of a strong partnership with key stakeholders.

BackgroundOlder people in long-term care facilities are at a greater risk of receiving care at the end of life that does not adequately meet their needs, yet staff in long-term care are often unprepared to provide palliative care. The objective of the study was to explore palliative care nurse specialists’ experiences regarding the benefits of and barriers to the implementation of a palliative care educational intervention, Supportive Hospice Aged Residential Exchange (SHARE) in 20 long-term care facilities.MethodsReflective logs (465), recorded over the course of the yearlong SHARE intervention by the three palliative care nurse specialists from two local hospices, who were the on-site mentors, were qualitatively analyzed by two researchers utilizing inductive content analysis.ResultsCategories emerging from the logs include the importance of relationships, knowledge exchange, communication, and the challenges of providing palliative care in a long-term care setting.ConclusionEvidence from the logs indicated that sustained relationships between the palliative care nurse specialists and staff (registered nurses, healthcare assistants) as well as reciprocal learning were key factors supporting the implementation of this palliative care educational intervention. Challenges remain however in relation to staffing levels, which further emphasizes the importance of palliative care nurse specialist presence as a point of stability.

Background: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems. Aim: The aim is o identify and compare sources of financial support for family caregivers of people approaching the end of life, across six countries with similarly performing health care systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States). Design: A survey of financial support, welfare and benefits for end of life family caregivers was completed by 99 palliative care experts from the six countries. Grey literature searches and academic database searches were also conducted. Comparative analyses of all data sources documented financial support within and between each country. Results: Some form of financial support for family caregivers is available in all six countries; however the type, extent and reach of support vary. Financial support is administered by multiple agencies, eligibility criteria for receiving support are numerous and complex, and there is considerable inequity in the provision of support. Conclusion: Numerous barriers exist to the receipt of financial support, welfare and benefits. We identified several areas of concern, including a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Nonetheless, there is significant potential for policymakers to learn from other countries’ experiences, particularly with regard to the scope and operationalisation of financial support.

Abstract Background: Older people in long-term care facilities are at a greater risk of receiving care at the end of life that does not adequately meet their needs, yet staff in long-term care are often unprepared to provide palliative care. The objective of the study was to explore hospice nurse experiences regarding the barriers and facilitators to the implementation of a palliative care educational intervention, Supportive Hospice Aged Residential Exchange (SHARE) in 20 long-term care facilities. Methods: Reflective logs (465), recorded over the course of the yearlong SHARE intervention by the three hospice nurses, who were the on-site mentors, were qualitatively analyzed by two researchers utilizing inductive content analysis. Results: Categories emerging from the logs include the importance of relationships, knowledge exchange, communication, and the challenges of providing palliative care in a long-term care setting. Conclusion: Evidence from the logs indicated that sustained relationships between hospice nurses and staff as well as reciprocal learning were key factors supporting the implementation of this palliative care educational intervention. Challenges remain however in relation to staffing levels, which further emphasizes the importance of hospice presence as a point of stability.

Background Little is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories. The aim of this study was to compare symptoms before death in LTC for those with cancer, dementia or chronic illness. Methods After-death prospective staff survey of resident deaths with random cluster sampling in 61 representative LTC facilities across New Zealand (3709 beds). Deaths (n = 286) were studied over 3 months in each facility. Standardised questionnaires - Symptom Management (SM-EOLD) and Comfort Assessment in End of life with Dementia (CAD-EOLD) - were administered to staff after the resident’s death. Results Primary diagnoses at the time of death were dementia (49%), chronic illness (30%), cancer (17%), and dementia and cancer (4%). Residents with cancer had more community hospice involvement (30%) than those with chronic illness (12%) or dementia (5%). There was no difference in mean SM-EOLD in the last month of life by diagnosis (cancer 26.9 (8.6), dementia 26.5(8.2), chronic illness 26.9(8.6). Planned contrast analyses of individual items found people with dementia had more pain and those with cancer had less anxiety. There was no difference in mean CAD-EOLD scores in the week before death by diagnosis (total sample 33.7(SD 5.2), dementia 34.4(SD 5.2), chronic illness 33.0(SD 5.1), cancer 33.3(5.1)). Planned contrast analyses showed significantly more physical symptoms for those with dementia and chronic illness in the last month of life than those with cancer. Conclusions Overall, symptoms in the last week and month of life did not vary by diagnosis. However, sub-group planned contrast analyses found those with dementia and chronic illness experienced more physical distress during the last weeks and months of life than those with cancer. These results highlight the complex nature of LTC end of life care that requires an integrated gerontology/palliative care approach.

Background Research has indicated that clinical staff in long-term care often lack self-confidence in palliative care delivery, particularly at the end of life. Goals (a) To examine the contribution of age, palliative care education, palliative care work-related experience and psychological empowerment to palliative care delivery confidence and (b) to explore the social reality shaping those factors for long-term care staff. Design Explanatory sequential design. Setting Twenty long-term care facilities in two district health boards in New Zealand. Participants Phase 1:139 clinical staff. Phase 2:46 clinical staff who provided care in the last month of a residents' life. Methods Phase 1: Cross-sectional survey. Phase 2: Individual semi-structured interviews. Results Phase 1: Previous experience (β = .319) and psychological empowerment (β = .311) contribute most to predicting an increase in palliative care delivery confidence. Phase 2: Four factors underlay palliative care delivery confidence, (a) mentorship by hospice nurses or colleagues (b) contextual factors (organisational culture, resources and experience), (c) maturity and (d) formal education. Conclusion Organisational leadership should use multiple strategies (e.g. power-sharing, increased opportunities for mentorship) to improve staff palliative care delivery confidence. Implications for practice This study adds to the literature in understanding the predictors of palliative care delivery confidence specific to long-term care staff. The results indicate that educational interventions must be contextually appropriate to achieve sustainable improvements in palliative care confidence and ultimately in resident care at the end of life.

This exploratory study examined general practitioners’ (GPs) perspectives on delivering end-of-life care in the New Zealand residential aged care context. A general inductive approach to the data collected from semi-structured interviews with 17 GPs from 15 different New Zealand general practices was taken. Findings examine: (1) GPs’ life experience; (2) the GP relationship with the facilities and provision of end-of-life care; (3) the GP interaction with families of dying residents; and (4) GP relationship with hospice. The nature of the GP relationship with the facility influenced GP involvement in end-of-life care in aged care facilities, with GPs not always able to direct a facility’s end-of-life care decisions for specific residents. GP participation in end-of-life care was constrained by GP time availability and the costs to the facilities for that time. GPs reported seldom using hospice services for residents, but did use the reputation (cachet) associated with hospice practices to provide an authoritative buffer for their end-of-life clinical decisions when talking with families and residents. GP training in end-of-life care, especially for those with dementia, was reported as ad hoc and done through informal mentoring between GPs.

It is increasingly recognised that palliative care research needs to pay more attention to culture if the diverse needs of service users are to be appropriately met. However, in most countries research, practice and policy in palliative care remains predicated upon a specific cultural understanding of the ‘good death’, firmly rooted in a Western world view. In this paper we present the formation of a new multi-disciplinary palliative care research group, explicitly set up along bi-cultural lines – The Te Ārai Palliative Care and End of Life Research Group to face challenges of traditional paradigms of palliative care in the specific context of Aotearoa New Zealand (NZ). We outline the rationale for establishing a research group which meets both Māori (indigenous people of NZ) and conventional Western standards for conducting academic research, describe our bi-cultural framework, and provide examples of how it shaped the design of three recently completed projects. We also situate our experience wi...