The work of palliative care from the perspectives of district nurses: A qualitative study.

AIM: To explore the work of palliative care from the perspectives of district nurses with a focus on the strategies they use to achieve positive outcomes for patients. DESIGN: An exploratory descriptive qualitative study. METHODS: A combination of group and individual interviews using semi-structured interviewing were used to explore district nurses' views of providing palliative care across two large urban community nursing services. RESULTS: Sixteen district nurse participants were interviewed. Three key themes were identified: "Getting what was needed" involved finding solutions, selling a story and establishing relationships. District nurses sought ways to "Stay involved" recognizing the benefit of delaying discharge for some patients. "Completing a nursing task" was a way of managing time constraints and a form of self-protection from having difficult conversations. CONCLUSION: This study highlights the importance of understanding the contextual nature of the practice setting in relation to the provision of palliative care. In doing so, it has revealed the strategies district nurses use to overcome the challenges associated with providing palliative care within a generalist workload. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: District nurses experience a tension between managing high patient workloads and remaining patient centred in palliative care. Being task focused is a way of remaining safe while managing a high volume of work and is not always a negative factor in the care they provide. However, focusing on a task while at the same time addressing other unmet needs requires a set of skills that less experienced nurses may not have. IMPACT: Palliative care education alone will not improve the quality of palliative care provided by generalist community district nurses. The practice context is an important factor to take into consideration when supporting the integration of palliative care in district nursing. NO PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution was made to this study. REPORTING METHOD: We have adhered to the relevant EQUATOR guidelines and used the COREQ reporting method.

Health professionals' experiences of rapport during telehealth encounters in community palliative care: An interpretive description study.

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.

Implementing interventions to improve compassionate nursing care: A literature review.

AIM: To identify strategies which support the implementation of interventions to promote compassionate nursing care with a focus on interventions designed to support improved patient outcomes and/or patient experience in acute hospitals. METHODS: An integrative review using the PRISMA guidelines and a 5-stage framework consisting of problem identification, literature search, data evaluation, data analysis and presentation. CINAHL, Embase, Medline, PsychInfo and Web of Science were systematically searched using key search terms. Hand searches were conducted of the reference lists of eligible articles and searching key journals. RESULTS: Six articles met the inclusion criteria with six different interventions described. A thematic analysis of the findings identified three key themes relating to the implementation of interventions which promote compassionate nursing care: (1) the importance of evidence; (2) support for nursing development; and (3) planning for and leading implementation. CONCLUSION: Compassionate care improves quality of life, the hospital experience and overall recovery. Strong nursing leadership and a supportive team environment are facilitators for delivery of compassionate care in acute settings. Excessive workload, overly rigid reporting and organisational indifference are barriers to delivery of compassionate care. IMPLICATIONS FOR NURSING POLICY: Health policy is used to inform the systematic implementation and delivery of patient care informed by best evidence. Health setting, environment and culture are important facets of the implementation of a compassionate care framework. Furthermore, nurse engagement, teamwork and nurse leadership are key facilitators for delivery of compassionate care in acute hospital settings. These findings need to be taken into consideration by policy makers and nursing leaders when designing and implementing compassionate care interventions. IMPLICATIONS FOR NURSING POLICY: Implementing interventions to improve compassionate nursing care can be challenging. This review identified the factors which should be considered by policy makers when implementing these interventions systematically throughout the healthcare system.

Cancer care in a time of COVID: lung cancer patient's experience of telehealth and connectedness.

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."

'Mum, I think we might ring the ambulance, okay?' A qualitative exploration of bereaved family members' experiences of emergency ambulance care at the end of life.

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.

Employment and family caregiving in palliative care: An international qualitative study.

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.

A task service and a talking service: A qualitative exploration of bereaved family perceptions of community nursing care at the end of life.

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.

The impact of uncertainty on bereaved family's experiences of care at the end of life: a thematic analysis of free text survey data.

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.

Palliative care delivery in residential aged care: bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention.

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.

Equity and the financial costs of informal caregiving in palliative care: a critical debate.

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.

Optimising compassionate nursing care at the end of life in hospital settings.

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 Maori and one non-Maori. 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.

Comparison of financial support for family caregivers of people at the end of life across six countries: A descriptive study.

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.

'It was peaceful, it was beautiful': A qualitative study of family understandings of good end-of-life care in hospital for people dying in advanced age.

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.

End of life care for long-term care residents with dementia, chronic illness and cancer: prospective staff survey.

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.

Study protocol for a 2-year longitudinal study of positive youth development at an urban sport for development facility.

BACKGROUND: Youth facing barriers created by social marginalization are at a greater risk of adverse health outcomes, lower educational and occupational attainment, and decreased overall quality of life as adults. The negative psychosocial and physiological consequences of significant barriers to positive development during youth may be mitigated by interventions promoting physical activity, psychosocial development, and healthy behaviours. Sport for Development programming is a possible opportunity for youth facing barriers to engage in activities that foster positive youth development, which may improve socioeconomic outcomes, quality of life and long-term health status in this population. This paper outlines the study protocol measuring impact of an urban Sport for Development facility on positive youth development in youth facing barriers. METHODS/DESIGN: Participants aged 6-29 will be recruited from programs at an urban Sport for Development facility to a 2-year prospective longitudinal mixed-methods study. Participants will be stratified by age into three cohorts with age-specific outcomes. Age-specific positive youth development outcomes will be assessed quantitatively by self-report and pedometer at baseline and after 6 months, 1-year, and 2-years of program participation. Focus groups will provide data regarding youth experience and the impact of facility and program components on youth outcomes. DISCUSSION: Our findings will inform best-practice and feasibility of a Sport for Development facility delivering programs in a socially and economically challenged urban setting in a high-income country. TRIAL REGISTRATION: ISRCTN67016999. Date of registration: October 22, 2019.

Palliative care nurse specialists' reflections on a palliative care educational intervention in long-term care: an inductive content analysis.

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 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. METHODS: Reflective 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. 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 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.

Predictors of patient-related benefit, burden and feeling safe in relation to hospital admissions in palliative care: A cross-sectional survey.

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.

Circumstances of hospital admissions in palliative care: A cross-sectional survey of patients admitted to hospital with palliative care needs.

BACKGROUND: On average, people will experience 2.28 hospital admissions in the last year of life with the likelihood of a hospital admission increasing in the last 2 weeks of life. Reducing hospital admissions has become a focus for high-income countries as they work to manage the financial implications of an ageing population. However, the circumstances by which patients with palliative care needs are admitted to hospital remain poorly understood. AIM: To explore the circumstances of hospital admissions for patients with palliative care needs. DESIGN: Cross-sectional survey design using face-to-face questionnaires. SETTING/PARTICIPANTS: In total, 116 patients aged >18 years admitted to a tertiary hospital with palliative care needs. RESULTS: Those with a non-cancer diagnosis and those aged over 75 years were less likely to have hospice involved prior to the admission ( x2 (1, n = 116) = 10.19, p = 0.00). Few patients recognised community services as having a role in enabling them to remain at home. Those with cancer placed a significantly higher priority on receiving information about their illness ( t(114) = 2.03, p = 0.04) and receiving tests and investigations ( t(114) = 2.37, p = 0.02) in hospital. CONCLUSION: This study has demonstrated the complexity of hospital admissions in palliative care. Further research is needed to explore patient perceptions of care at home and the role of community services to enable them to remain at home. Understanding the motivation to come to hospital in the context of an incurable illness and limited treatment options may help to inform the development of services that can enable better care at home.

Burnout, compassion fatigue and psychological capital: Findings from a survey of nurses delivering palliative care.

BACKGROUND: Ageing populations worldwide and a concomitant increase in chronic conditions translates into an increased demand for the delivery of palliative and end of life care by nurses. This increasing demand for palliative care provision may produce stressors resulting in negative outcomes such as burnout and compassion fatigue. AIM: The purpose of this study was to explore burnout and compassion fatigue, as well as potential protective factors, among nurses in New Zealand. METHODS: An online survey was conducted with 256 registered nurses (between January 2016 and February 2017) recruited through nursing organisations and a large tertiary level hospital. Data analysis consisted of descriptive statistics, multivariate analysis of variance, Pearson correlations, and hierarchical multiple regression. RESULTS: Psychological empowerment and the commitment and challenge components of psychological hardiness significantly predicted lower scores for the burnout while previous palliative care education and challenge predicted lower scores for the secondary traumatic stress component of compassion fatigue. Significant predictors of compassion satisfaction included previous palliative care education, psychological empowerment and both the commitment and challenge components of psychological hardiness. CONCLUSION: Nurses draw upon unique combinations of "psychological capital" to deal with caring for patients with life-limiting illnesses. Any interventions to increase nurse palliative care education uptake must be tailored to develop and support these internal resources.

Complex contradictions in conceptualisations of 'dignity' in palliative 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.