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.

Psychosocial interventions for post-treatment haematological cancer survivors: An integrative review.

PURPOSE: To synthesize literature regarding the implementation and evaluation of psychosocial interventions designed to reduce distress in post-treatment haematological cancer survivors. METHODS: An integrative review was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Databases searched were Medline, Cinahl, PsychInfo, WoS, and EMBASE, during November 2022. RESULTS: The total number of eligible studies was 14. The interventions comprised four main intervention categories: care planning, psychological therapy-based, supported self-care/self-management, and survivorship clinic visits. Overall psychosocial interventions were shown to improve outcomes for haematological cancer survivors. CONCLUSIONS: Psychosocial interventions may play a role in reducing distress for post-treatment haematological cancer survivors and have shown improvements in both psychological and physical outcomes. However, the evidence base was limited and heterogeneous indicating the need for more research. IMPLICATIONS FOR CANCER SURVIVORS: Psychosocial interventions for haematological cancer survivors have the potential to reduce psychosocial distress during the post-treatment period.

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 Contributions During the COVID-19 Pandemic Response.

During the COVID-19 pandemic, older people were identified as requiring additional support and protection. This multi-method qualitative study shifts this narrative by asking: how did older people contribute to the COVID-19 public health response? We conducted a reflexive thematic analysis of responses from 870 letter-writers and 44 interviewees who were older people living in Aotearoa, New Zealand during the COVID-19 pandemic. Older people made substantial contributions during the COVID-19 pandemic through: 1) volunteering; 2) nurturing; and 3) advocacy/activism. We argue that policy makers should take seriously the ways older people were providers of help and support in this period.

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.

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.

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.

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.

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.

'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.

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.

'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.

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.

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.

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.

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.

End of life care preferences among people of advanced age: LiLACS NZ.

BACKGROUND: Understanding end of life preferences amongst the oldest old is crucial to informing appropriate palliative and end of life care internationally. However, little has been reported in the academic literature about the end of life preferences of people in advanced age, particularly the preferences of indigenous older people, including New Zealand Maori. METHODS: Data on end of life preferences were gathered from 147 Maori (aged >80 years) and 291 non- Maori aged (>85 years), during three waves of Te Puawaitangi O Nga Tapuwae Kia Ora Tonu, Life and Living in Advanced Age (LiLACs NZ). An interviewer-led questionnaire using standardised tools and including Maori specific subsections was used. RESULTS: The top priority for both Maori and non-Maori participants at end of life was 'not being a burden to my family'. Interestingly, a home death was not a high priority for either group. End of life preferences differed by gender, however these differences were culturally contingent. More female Maori participants wanted spiritual practices at end of life than male Maori participants. More male non-Maori participants wanted to be resuscitated than female non- Maori participants. CONCLUSIONS: That a home death was not in the top three end of life priorities for our participants is not consistent with palliative care policy in most developed countries where place of death, and particularly home death, is a central concern. Conversely our participants' top concern - namely not being a burden - has received little research or policy attention. Our results also indicate a need to pay attention to diversity in end of life preferences amongst people of advanced age, as well as the socio-cultural context within which preferences are formulated.

Can digital stories go where palliative care research has never gone before? A descriptive qualitative study exploring the application of an emerging public health research method in an indigenous palliative care context.

BACKGROUND: The World Health Organization (WHO) has called for global approaches to palliative care development. Yet it is questionable whether one-size-fits-all solutions can accommodate international disparities in palliative care need. More flexible research methods are called for in order to understand diverse priorities at local levels. This is especially imperative for Indigenous populations and other groups underrepresented in the palliative care evidence-base. Digital storytelling (DST) offers the potential to be one such method. Digital stories are short first-person videos that tell a story of great significance to the creator. The method has already found a place within public health research and has been described as a useful, emergent method for community-based participatory research. METHODS: The aim of this study was to explore Maori participants' views on DST's usefulness, from an Indigenous perspective, as a research method within the discipline of palliative care. The digital storytelling method was adapted to include Maori cultural protocols. Data capturing participant experience of the study were collected using participant observation and anonymous questionnaires. Eight participants, seven women and one man, took part. Field notes and questionnaire data were analysed using critical thematic analysis. RESULTS: Two main themes were identified during analyses: 1) issues that facilitated digital storytelling's usefulness as a research method for Maori reporting on end of life caregiving; and 2) issues that hindered this process. All subthemes identified: recruitment, the powhiri process, (Maori formal welcome of visitors) and technology, related to both main themes and are presented in this way. CONCLUSION: Digital storytelling is an emerging method useful for exploring Indigenous palliative care issues. In line with a Health Promoting Palliative Care approach that centres research in communities, it helps meet the need for diverse approaches to involve underrepresented groups.

The Views of Informal Carers' Evaluation of Services (VOICES): Toward an adaptation for the New Zealand bicultural context.

OBJECTIVE: The Views of Informal Carers Experiences of Services (VOICES) instrument is a postal questionnaire that has been utilized internationally to capture the experiences of end-of-life care during the last months of life. Aotearoa/New Zealand, traditionally a bicultural society, reflects both the European worldview and that of the indigenous Maori. The Maori collectivist worldview considers whanau (extended family) support as key at the end of life and privileges "kanohi ki te kanohi" (face-to-face) meetings. In such a context, how will VOICES be received? Our pilot study was designed to test the effectiveness of an adaptation of the VOICES questionnaire in the New Zealand social setting for both Maori and non-Maori. METHOD: Cognitive interviews were conducted with 20 bereaved whanau and family members whose relative died between January 1 and April 4, 2014, in one urban New Zealand hospital. Thematic analysis was conducted on the resulting transcripts. RESULTS: We found that, although the questionnaire provides valuable information, administration of the current questionnaire within a bicultural context is problematic. These problems are related to its scope, cultural acceptability, structure, and content. Distribution of the VOICES questionnaire, either through the post or online, without prior consultation, also risks engaging Maori in a culturally inappropriate manner. SIGNIFICANCE OF RESULTS: These findings will prompt revisions to both the content and research approach to implementing VOICES in a bicultural context. Recommendations include prior consultation with local indigenous communities as well as utilization of a mixed-methods approach to utilizing VOICES in a bicultural context. The cognitive interview procedures employed (adjusted for a collectivist worldview) in this study may also prove useful to indigenous groups seeking to develop or adapt questionnaires within a bicultural or multicultural context.

'No matter what the cost': A qualitative study of the financial costs faced by family and whanau caregivers within a palliative care context.

BACKGROUND: There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life. AIM: To explore the nature and range of financial costs incurred by family caregiving within a palliative care context. DESIGN: In-depth qualitative interviews were conducted with 30 family/whanau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels. SETTING: Auckland, New Zealand. FINDINGS: Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited. CONCLUSION: Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and whanau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings.