Dying well in Aotearoa New Zealand for ethnic minority communities: a time for reclamation?

Despite technological advances and a disproportionate increase in health expenditure at the end-of-life, most New Zealanders die in hospital or in aged residential care. This counters the aspirations espoused by Te Whatu Ora (Health New Zealand) for all New Zealanders "to live well, age well and die well in their homes and communities." Furthermore, despite reported inequities in end-of-life care experienced by ethnic minority communities (EMCs) overseas, and increasing proportions of people identifying with Asian, Middle Eastern, Latin American and African ethnicities in Aotearoa New Zealand, local data, research and policies addressing healthcare needs of EMCs at end-of-life are scant. Acknowledging this invisibility, we reflect on and discuss the current discourses on death and dying, the complex experiences at end-of-life for EMCs, including concepts of a "good death", the impact of recent existential crises (e.g., COVID-19 pandemic, climate change) on death awareness, and the global rise to reclaim dying as an important part of living. We argue for the need: a) to partner with ethnic communities to co-design culturally safe end-of-life health services, and b) to adopt a "compassionate communities" public health approach that can support people of EMCs at the end-of-life to die well.

Maori end-of-life care in the intensive care unit: A qualitative exploration of nursing perspectives.

BACKGROUND: Although goals of care for intensive care patients are typically focussed on restoration of health, 8-15% of patients will die in the intensive care unit (ICU), or soon after transfer to a ward. Early recognition of the need for end-of-life care is vital to identify and support the wishes of the patient and needs of their family. In Aotearoa, New Zealand, Maori are over-represented in admissions to ICUs. Enabling nursing staff to provide culturally safe care to Maori patients and whanau (family, including extended family, kin) at the end of life is critical to upholding Te Tiriti o Waitangi requirements and providing equitable care. This qualitative study explores the experiences of both Maori and non-Maori intensive care nurses, in providing end-of-life care for Maori patients and their whanau. OBJECTIVES: The objective of this study was to characterise nursing experiences of end-of-life care for Maori in the ICU, identify barriers to and facilitators of confident, competent culturally responsive care, and highlight opportunities to improve preparation and support. METHODS: Qualitative semistructured interviews were undertaken with nine intensive care nurses (four Maori and five non-Maori) with experience ranging from novice to expert. Data collection and analysis was underpinned by reflexive thematic analysis strengthened by Kaupapa Maori Research values and tikanga best practice. FINDINGS: Participants described positive and negative experiences in caring for Maori at the end of life. Culturally responsive end-of-life care for Maori in intensive care appears dependent on the acknowledgement and inclusion of whanau as members of the multidisciplinary team. Participants identified a need for high-quality education, supportive unit end-of-life care guidelines and hospital policies, and cultural resources to confidently provide quality end-of-life care. CONCLUSION: Improved understanding of Maori culture, critical awareness of systems of power and privilege, and the availability of cultural liaisons may increase the confidence and competence of ICU nurses providing care to Maori whanau.

Older people's views on loneliness during COVID-19 lockdowns.

BACKGROUND AND OBJECTIVES: There have been growing concerns that social distancing and stay-at-home mandates have exacerbated loneliness for older people. Empirical evidence about older people's experiences of loneliness and COVID-19 have quantified this phenomena without considering how older people themselves define and understand loneliness. This paper explores how older New Zealanders conceptualized and experienced loneliness under 'lockdown' stay-at-home measures. METHODS: This multi-methods qualitative study combines data from letters (n = 870) and interviews (n = 44) collected from 914 people aged over 60 and living in Aotearoa, New Zealand during the COVID-19 pandemic. We conducted a reflexive thematic analysis to conceptualise this data. FINDINGS: We identify three interconnected ways in which older people conceptualised and experienced loneliness: (1) feeling disconnected relating to lack of emotional closeness to another often resulting from being physically separated from others and not being able to touch; (2) feeling imprisoned relating to separation from preferred identities and activities and was frequently associated with boredom and frustration; and (3) feeling neglected which often related to feeling let down by generalised and idealised forms of support, such as one's neighbourhood and health care system. DISCUSSION: Older New Zealanders experienced lockdown loneliness in three interconnected ways rather than as a stable and homogenous experience. Maori, Pacific, Asian and New Zealand European older people often discussed loneliness in different ways; attesting to loneliness being a culturally-mediated concept shaped by expectations around desirable social interaction. We conclude the paper with implications for research and policy.

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.

Reflecting on choices and responsibility in palliative care in the context of social disadvantage.

There is a need to understand how to improve palliative care provision for people impacted by social inequity. Social inequity, such as that related to socioeconomic circumstances, has profound impacts on experiences of death and dying, posing personal and professional challenges for frontline professionals tasked to ensure that everyone receives the best standard of care at the end of their lives. Recent research has highlighted an urgent need to find ways of supporting healthcare professionals to acknowledge and unpack some of the challenges experienced when trying to deliver equitable palliative care. For example, those involved in patient or person-centred activities within health settings often feel comfortable focusing on individual choice and responsibility. This can become ethically problematic when considering that inequities experienced towards the end of life are produced and constrained by socio-structural forces beyond one individual's control. Ideas and theories originating outside palliative care, including work on structural injustice, cultural safety and capabilities approach, offer an alternative lens through which to consider roles and responsibilities for attending to inequities experienced at the end of life. This paper draws upon these ideas to offer a new way of framing individual responsibility, agency and collective action that may help palliative care professionals to support patients nearing their end of life, and their families, in the context of socioeconomic disadvantage. In this paper, we argue that, ultimately, for action on inequity in palliative care to be effective, it must be coherent with how people understand the production of, and responsibility for, those inequities, something that there is limited understanding of within palliative care.

A bad time to die? Exploring bereaved families/wha-nau experiences of end-of-life care under COVID-19 restrictions: a qualitative interview study.

Background: There have been international concerns raised that, during the COVID-19 pandemic, there was an absence of good palliative care resulting in poor end-of-life care experiences. To date, there have been few studies considering the pandemic's impact on people dying from non-COVID-19 causes and their families and friends. In particular, there has been very less empirical research in relation to end-of-life care for Indigenous, migrant and minoritised ethnic communities. Objectives: To explore bereaved next-of-kin's views and experiences of end-of-life care under COVID-19 pandemic regulations. Design: This qualitative study involved in-depth one-off interviews with 30 ethnically diverse next-of-kin who had a family member die in the first year of the pandemic in Aotearoa, New Zealand. Methods: Interviews were conducted by ethnically matched interviewers/interviewees. A reflexive thematic analysis was used to explore and conceptualise their accounts. Results: A key finding was that dying alone and contracting COVID-19 were seen as equally significant risks by bereaved families. Through this analysis, we identified five key themes: (1) compromised connection; (2) uncertain communication; (3) cultural safety; (4) supported grieving and (5) silver linings. Conclusion: This article emphasises the importance of enabling safe and supported access for family/whanau to be with their family/wha-nau member at end-of-life. We identify a need for wider provision of bereavement support. We recommend that policy makers increase resourcing of palliative care services to ensure that patients and their families receive high-quality end-of-life care, both during and post this pandemic. Policy makers could also promote a culturally-diverse end-of-life care work force and the embedding of culturally-safety practices across a range of institutions where people die.

Health care providers' early experiences of assisted dying in Aotearoa New Zealand: an evolving clinical service.

BACKGROUND: In November 2021, assisted dying (AD) became lawful in Aotearoa New Zealand. A terminally ill person may now request, and receive, pharmacological assistance (self-administered or provided by a medical practitioner/nurse practitioner) to end their life, subject to specific legal criteria and processes. Exploring the experiences of health providers in the initial stage of the implementation of the End of Life Choice Act 2019 is vital to inform the ongoing development of safe and effective AD practice, policy and law. AIM: To explore the early experiences of health care providers (HCPs) who do and do not provide AD services seven months after legalisation of AD to provide the first empirical account of how the AD service is operating in New Zealand's distinctive healthcare environment and cultural context. DESIGN: Qualitative exploratory design using semi-structured individual and focus group interviewing with a range of HCPs. RESULTS: Twenty-six HCPs participated in the study. Through a process of thematic analysis four key themes were identified: (1) Difference in organisational response to AD; (2) challenges in applying the law; (3) experiences at the coal face; and (4) functionality of the AD system. CONCLUSION: A range of barriers and enablers to successful implementation of AD were described. Adoption of open and transparent organisational policies, ongoing education of the workforce, and measures to reduce stigma associated with AD are necessary to facilitate high quality AD service provision. Future research into the factors that influence responses to, and experience of AD; the impact of institutional objection; and the extent to which HCP perspectives evolve over time would be beneficial. In addition, further research into the integration of AD within Maori health organisations is required.

Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.

BACKGROUND: The number of people living with dementia (PLWD) in Aotearoa New Zealand (NZ) was estimated at 96,713 in 2020 and it is anticipated that this number will increase to 167,483 by 2050, including an estimated 12,039 Maori (indigenous people of NZ) with dementia. Experiencing urinary incontinence (UI) or faecal incontinence (FI) is common for PLWD, particularly at the later stages of the disease. However, there is no robust estimate for either prevalence or incidence of UI or FI for PLWD in NZ. Although caregivers rate independent toilet use as the most important activity of daily living to be preserved, continence care for PLWD in the community is currently not systematised and there is no structured care pathway. The evidence to guide continence practice is limited, and more needs to be known about caregiving and promoting continence and managing incontinence for PLWD in the community. This project will seek to understand the extent of the challenge and current practices of health professionals, PLWD, caregivers and family; identify promising strategies; co-develop culturally appropriate guidelines and support materials to improve outcomes; and identify appropriate quality indicators so that good continence care can be measured in future interventions. METHODS AND ANALYSIS: A four-phase mixed methods study will be delivered over three years: three phases will run concurrently, followed by a fourth transformative sequential phase. Phase 1 will identify the prevalence and incidence of incontinence for PLWD in the community using a cohort study from standardised home care interRAI assessments. Phase 2 will explore continence management for PLWD in the community through a review of clinical policies and guidance from publicly funded continence services, and qualitative focus group interviews with health professionals. Phase 3 will explore experiences, strategies, impact and consequences of promoting continence and managing incontinence for PLWD in the community through secondary data analysis of an existing carers' study, and collecting new cross-sectional and longitudinal qualitative data from Maori and non-Maori PLWD and their caregivers. In Phase 4, two adapted 3-stage Delphi processes will be used to co-produce clinical guidelines and a core outcome set, while a series of workshops will be used to co-produce caregiver resources.

Family & bystander experiences of emergency ambulance services care: a scoping review.

BACKGROUND: Emergency ambulance personnel respond to a variety of incidents in the community, including medical, trauma and obstetric emergencies. Family and bystanders present on scene may provide first aid, reassurance, background information or even act as proxy decision-makers. For most people, involvement in any event requiring an emergency ambulance response is a stressful and salient experience. The aim of this scoping review is to identify and synthesise all published, peer-reviewed research describing family and bystanders' experiences of emergency ambulance care. METHODS: This scoping review included peer-reviewed studies that reported on family or bystander experiences where emergency ambulance services responded. Five databases were searched in May 2022: Medline, CINAHL, Scopus, ProQuest Dissertation & Theses and PsycINFO. After de-duplication and title and abstract screening, 72 articles were reviewed in full by two authors for inclusion. Data analysis was completed using thematic synthesis. RESULTS: Thirty-five articles reporting heterogeneous research designs were included in this review (Qualitative = 21, Quantitative = 2, Mixed methods = 10, Evidence synthesis = 2). Thematic synthesis developed five key themes characterising family member and bystander experiences. In an emergency event, family members and bystanders described chaotic and unreal scenes and emotional extremes of hope and hopelessness. Communication with emergency ambulance personnel played a key role in family member and bystander experience both during and after an emergency event. It is particularly important to family members that they are present during emergencies not just as witnesses but as partners in decision-making. In the event of a death, family and bystanders want access to psychological post-event support. CONCLUSION: By incorporating patient and family-centred care into practice emergency ambulance personnel can influence the experience of family members and bystanders during emergency ambulance responses. More research is needed to explore the needs of diverse populations, particularly regarding differences in cultural and family paradigms as current research reports the experiences of westernised nuclear family experiences.

Bullying, discrimination, and sexual harassment among intensive care unit nurses in Australia and New Zealand: An online survey.

BACKGROUND: Bullying, discrimination, and sexual harassment are significant problems within healthcare organisations but are often under-reported. Consequences of these behaviours within a healthcare setting are wide ranging, affecting workplace environments, personal well-being, and patient care and leading to increased staff turnover and quality of patient care and outcomes. Whilst there has been some work undertaken in the general nursing workforce, there is a dearth of evidence regarding the extent and impact of these behaviours on the nursing workforce in intensive care units (ICUs) in Australia and New Zealand. OBJECTIVE: We aimed to determine self-reported occurrences of bullying, discrimination, and sexual harassment amongst ICU nurses in Australia and New Zealand. METHODS: A prospective, cross-sectional, online survey of ICU nurses in Australia and New Zealand was undertaken in May-June 2021, distributed through formal colleges, societies, and social media. Questions included demographics and three separate sections addressing bullying, sexual harassment, and discrimination. RESULTS: In 679 survey responses, the overall reported occurrences of bullying, discrimination, and sexual harassment in the last 12 months were 57.1%, 32.6%, and 1.9%, respectively. Perpetrators of bullying were predominantly nurses (59.6%, with 57.9% being ICU nurses); perpetrators of discrimination were nurses (51.7%, with 49.3% being ICU nurses); and perpetrators of sexual harassment were patients (34.6%). Respondents most commonly (66%) did not report these behaviours as they did not feel confident that the issue would be resolved or addressed. CONCLUSIONS: Determining the true extent of bullying, discrimination, and sexual harassment behaviours within the ICU nursing community in Australia and New Zealand is difficult; however, it is clear a problem exists. These behaviours require recognition, reporting, and an effective resolution, rather than normalisation within healthcare professions and workplace settings in order to support and retain ICU nursing staff.

Creating 'safe spaces': A qualitative study to explore enablers and barriers to culturally safe end-of-life care.

BACKGROUND: Internationally, efforts are being made to promote equity in palliative and end-of-life care for Indigenous peoples. There is a need to better understand the experiences of Indigenous service users and staff. AIM: To explore the views of Maori health practitioners and whanau (family group) caregivers regarding barriers and enablers to culturally safe palliative and end-of-life care. DESIGN: A Kaupapa Maori qualitative study. SETTING/PARTICIPANTS: Interviews were conducted with 103 participants from four areas of the North Island of Aotearoa New Zealand. Participants comprised bereaved whanau (family) of Maori with a life limiting illness and Maori health practitioners. RESULTS: Maori health practitioners undertake cultural and connecting work to promote culturally safe palliative and end-of-life care for Maori patients and their whanau. This work is time-consuming and emotionally and culturally demanding and, for most, unpaid and unrecognised. Non-Maori staff can support this work by familiarising themselves with te reo Maori (the Maori language) and respecting cultural care customs. However, achieving culturally safe end-of-life care necessitates fundamental structural change and shared decision-making. CONCLUSIONS: Our findings indicate that efforts to support equitable palliative care for Indigenous people should recognise, and support, the existing efforts of health practitioners from these communities. Colleagues from non-Indigenous populations can support this work in a range of ways. Cultural safety must be appropriately resourced and embedded within health systems if aspirations of equitable palliative and end-of-life care are to be realised.

Bereaved Families' Perspectives of End-of-Life Care. Towards a Bicultural Whare Tapa Wha Older person's Palliative Care Model.

The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Maori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Maori and 39 non-Maori), who cared for 52 family members who died aged over 80 years. A Kaupapa Maori thematic analysis of family/whanau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Wha Older Person's Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person's mana (authority, status, spiritual power) across four critical health domains: Whanau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The "indigenous" model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.

'People haven't got that close connection': meanings of loneliness and social isolation to culturally diverse older people.

Objectives: Social isolation and loneliness among older people are known to have negative effects on health and wellbeing. Few studies, however, have enabled older people to define these concepts in their own terms. This paper based on research in Aotearoa, New Zealand is the first to comparatively outline the meanings of loneliness and social isolation from the perspective of four ethnically diverse groups of older adults (Maori, Pacific, Asian, and NZ European).Method: We interviewed 44 older people and conducted three focus groups with 32 older people. We used thematic and narrative analyses.Results: Loneliness and social isolation were conceptualized as interconnected concepts described as a 'look and feel', a 'state of mind' and as a 'lack of desired companionship'. Participants conveyed sophisticated understandings of the structural underpinnings of both loneliness and social isolation as multi-dimensional, complex, and situated.Conclusions: Older people describe complex and culturally- nuanced understanding and experience of social isolation and loneliness. More culturally appropriate services, greater mental-health support and more service provision on weekends and evenings are needed.

Befriending Services for Culturally Diverse Older People.

Befriending services may address loneliness and social isolation amongst older people. However social diversity is rarely reported in investigations of befriending services. The views of non-users are also rarely explored. In this research, we explored older adults' experiences of, and attitudes towards, a befriending service, among service users and non-service users, drawing on interviews and focus groups with 76 older adults, 10 volunteer visitors, and 20 service providers. Participants agreed that the befriending service helped alleviate social isolation and loneliness and that supportive services to foster connection are needed. Barriers to engagement included lack of knowledge, appropriateness of services and feeling undeserving. The befriending service was most successful when a match went beyond a transactional 'professional-client' relationship to resemble genuine friendship, underpinned by mutual interests and norms of reciprocity and reliability. We also identified five clear ideas about what characterizes an ideal supportive service; supported opportunities for getting out, genuine and reciprocal relationships, reliability, visitor characteristics, and connecting people to their culture. Befriending adds to social networks, and enhances connectedness to the community. Loneliness is alleviated when mutually beneficial and genuinely reciprocal relationships develop. However, group interventions or connections to community groups may be more appropriate for some.

'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.

Maori: living and dying with cardiovascular disease in Aotearoa New Zealand.

PURPOSE OF REVIEW: This article provides an informed perspective on cardiovascular disease (CVD) and palliative care need among Maori New Zealanders. High Maori CVD risk factors will contribute to a sharp increase in older Maori deaths which has implications for health and palliative care service provision. RECENT FINDINGS: CVD is New Zealand's leading cause of premature deaths and disability among Maori. A projected rise in older Maori deaths within the next 30 years will require increased palliative care. However, accessing palliative care and obtaining and understanding information can be challenging for families who are already often overburdened with high social and economic disadvantages. Meeting the high financial costs associated with end-of-life care make living with CVD challenging. Engaging with the health system's biomedical approach when holistic care is preferable can be a major barrier. SUMMARY: Maori families provide the bulk of care at end-of-life, but they can become fatigued with the challenges that accompany long-term progressive illnesses, such as CVD. They are also burdened by the financial costs associated with end-of-life. It is often difficult for Maori to access palliative care and to obtain and understand information about the illness and treatment. Navigating an unfamiliar and complex health system, low health literacy among Maori and poor relationship building and communication skills of health professionals are significant barriers. Cultural safety training would help to increase health and cardiovascular professionals' cultural understanding of Maori and their holistic end-of-life preferences; this could go some way to strengthen rapport building and communication skills necessary for effective engagement and informational exchanges. Increasing the Maori palliative care workforce and introducing cultural safety training among health professionals could help to bridge the gap. A current study to gather traditional care customs and present these to whanau and the health and palliative care sectors in the form of an online resource could contribute to this decolonizing objective.

Caregivers for people at end of life in advanced age: knowing, doing and negotiating care.

Background: the need for palliative and end of life care for the oldest old is growing rapidly. Family carers often report they do not feel well supported; for better practice and policy, we need better understanding of their experiences and how to support them. Design and setting: people in the LiLACS NZ longitudinal study of advanced age identified a carer to be interviewed after their death. Nominated caregivers were contacted 3-6 months after an older person's death and invited to take part in the current study. Subjects: fifty-eight interviews were conducted with carers of 52 people in advanced age, 20 Maori and 32 non-Maori. The majority of the 58 carers were in their 60 s and were women. Methods: guided-conversation interviews covered end of life preferences and experiences, needs and gaps in support, arrangements after death, and experiences of bereavement. Rigorous data analysis included multiple researchers identifying and interrogating themes across and within the transcripts, and feedback and discussion with participants. Results: we identify a typology of nine categories of care, and argue that the support and care provided by family should be understood as going beyond simple task-based transactions. We present a model of end of life care describing and explaining inter-related aspects of knowing, doing and negotiating care tasks. Conclusions: this work furthers current understandings of care, as multifaceted and negotiated. This has very practical implications for thinking about how best to support the complex end of life caregiving work of people caring for a person in advanced age.

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.

What is the role of community at the end of life for people dying in advanced age? A qualitative study with bereaved family carers.

BACKGROUND: New public health approaches to palliative care prioritise the role of community at end of life. However, little is known about community support for the increasing numbers of people dying in advanced age. AIM: To explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers. DESIGN: A constructionist framework underpinned a qualitative research design. Data were analysed using critical thematic analysis. SETTING/PARTICIPANTS: A total of 58 participants (19 Maori and 39 non-Maori) who cared for 52 family members who died at >80 years of age participated in semi-structured interviews. RESULTS: A reduction in the social networks and community engagement of the older person was identified in the end-of-life period. Numerous barriers to community engagement in advanced age were identified, including poor health (notably dementia), moving into an aged care facility and lack of access due to transport difficulties. An active withdrawal from community at end of life was also noted. Carers felt limited support from community currently, but identified that communities could play a particular role in reducing social isolation and loneliness among people of advanced age prior to death. CONCLUSION: Our study provides strong support for public health approaches to palliative care that advocate building social networks around people who are dying and their family carers. However, it also indicates that strategies to do so must be flexible enough to be responsive to the unique end-of-life circumstances of people in advanced age.