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.

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.

Inequalities between Maori and non-Maori men with prostate cancer in Aotearoa New Zealand.

Maori experience poorer health statistics in terms of cancer incidence and mortality compared to non-Maori. For prostate cancer, Maori men are less likely than non-Maori men to be diagnosed with prostate cancer, but those that are diagnosed are much more likely to die of the disease than non-Maori men resulting in an excess mortality rate in Maori men compared with non-Maori. A review of the literature included a review of the epidemiology of prostate cancer; of screening; of access to healthcare and of treatment modalities. Our conclusion was that there are a number of reasons for the disparity in outcomes for Maori including differences in staging and characteristics at diagnosis; differences in screening and treatment offered to Maori men; and general barriers to healthcare that exist for Maori men in New Zealand. We conclude that there is a need for more culturally appropriate care to be available to Maori men.

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.

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.

'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.

Health service provider responses to indigenous peoples with cancer: An integrative review.

Indigenous populations around the world have a higher burden of cancer incidence, severity and mortality. This integrative review aims to identify and appraise the evidence of health providers' responses to the issue of indigenous peoples with cancer. A surprisingly small number of studies were found (n = 9) that reported on programmes and interventions for indigenous people with cancer, the majority of which were from the USA. Our review shows that a service delivery approach that is focused on the indigenous population and includes culturally appropriate activities, resources and environments resulted in an increase in cancer knowledge, reduction in treatment interruption, improved access to cancer care and enrolment in clinical cancer trials, and increased satisfaction with health care. However, the question of why there are so few published studies needs further consideration.

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.

Nga Whenu Raranga/Weaving Strands in the Alcohol and Other Drug Treatment Court of Aotearoa/New Zealand.

This article reports findings from an ethnographic study that explored the meaning of therapeutic in the Alcohol and Other Drug Treatment (AODT) Court in New Zealand. Descriptions are provided of the therapeutic framework called nga whenu raranga/weaving strands that resulted from interviews with court team members (n = 25), courtroom observations (200 hours), and document analysis. This includes the details of four strands; Law, United States Best Practice, Recovery and Lore that compose the framework. We argue that the therapeutic framework is simultaneously a philosophical and practical accomplishment and we provide brief examples of how the four strands are woven together, with each strand shaping the other, as the court team, participants and wider community interact together. The article concludes by considering the implications of the study's findings, focusing on challenges that come with the widening of therapeutic discourse in the AODT Court.

Cultural health literacy: the experiences of Maori in palliative care.

Health literacy is a concept that is frequently applied to the patient's ability to find and comprehend health information. However, recent literature has included the skill of the health professional and the accessibility of health resources as important factors in the level of health literacy achieved by individuals and populations. In 2014 a qualitative study undertaken in Aotearoa New Zealand, investigated the context of health literacy for Maori in a palliative care setting (Maori are the indigenous people of Aotearoa New Zealand). The study included the experiences of patients, whanau (families), and health professionals. METHOD: Individual semi-structured interviews were held with 21 patients, whanau and six key informants: a medical specialist, a service leader involved in developing culturally specific responses to patients, two Maori service managers, and two Maori health team leaders. Focus groups were held with a total of 54 health professionals providing palliative care services. DATA ANALYSIS: A thematic analysis was undertaken using a general inductive approach. The trustworthiness and reliability of the analysis was supported by sharing analysis of the transcripts among the research team. Member checking or respondent validation was used in seeking confirmation of the interim findings at five hui (meetings) with the research communities involved. FINDINGS: This study found that the shock and grief that attends a life-limiting illness made hearing and processing health information very difficult for patients and whanau. Further, 'hard conversations' about moving from active treatment to palliative care were often avoided by health professionals, leaving patients and whanau distressed and confused about their choices and prognosis. Finally, poor cultural health literacy on the part of organisations has likely impacted on late access to or avoidance of palliative care for Maori.

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.

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.

Te Pakeketanga: living and dying in advanced age--a study protocol.

BACKGROUND: The number of people dying in advanced old age is increasing rapidly and building the evidence base regarding end - of - life care for older people has been identified as an international policy priority. The unique opportunity to link longitudinal studies of ageing with studies exploring the end of life circumstances of older people remains under-exploited internationally. Very little is known about the specific circumstances, cultural needs and care preferences of indigenous older people, including Maori, at end - of - life and the needs of their whanau/ extended family carers. METHODS: We will use rigorous qualitative methods to conduct post-bereavement interviews with bereaved whanau and family of 50-60 people who died >80 years; approximately half of participants will be Maori. The older decedents were participants in the first longitudinal study of older people involving a specific indigenous cohort internationally: Te Puawaitanga O Nga Tapuwae Kia Ora Tonu, Life and Living in Advanced Age: a Cohort Study in New Zealand (LiLACS NZ). Prior to death, they completed a questionnaire regarding their end-of-life preferences and nominated a family or whanau member to participate in this separate study exploring end-of-life circumstances of those in advanced age. DISCUSSION: Recommendations to improve care will be formulated in collaboration with participants and their local hapu (sub-tribe). Ultimately this study has the potential to inform better outcomes for the growing numbers of people dying in advanced old age both in New Zealand and internationally, as well as their whanau and family caregivers. It also highlights the ability to generate an in-depth understanding of end-of-life circumstances by appending studies of palliative and end-of-life care onto existing longitudinal studies.

PA12†Is digital storytelling ka pai for new zealand māori? using digital storytelling as a method to explore whānau end of life caregiving experiences: a pilot study.

BACKGROUND: Māori regard stories as a preferred method for imparting knowledge through waiata (song), moteatea (poetry), kauwhau (moralistic tale), pakiwaitara (story) and purakau (myths). Storytelling is also an expression of tinorangatiratanga (self-determination); Māori have the right to manage their knowledge, which includes embodiment in forms transcending typical western formulations. Digital storytelling is a process by which 'ordinary people' create short autobiographical videos. It has found application in numerous disciplines including public health and has been used to articulatethe experiences of those often excluded from knowledge production. AIM: To explore the use of digital storytelling as a research method for learning about whānau (family) experiences providing end of life care for kaumātua (older people). METHODS: Eight Māori and their nominated co-creators attended a three-day digital story telling workshop led by co-researchers Shuchi Kothari and Sarina Pearson. They were guided in the creation of first-person digital stories about caring for kaumātua. The videos were shared at a group screening, and participants completed questionnaires about the workshop and their videos. A Kaupapa Māori narrative analysis was applied to their stories to gain new perspectives on Māori end of life caregiving practices. (Kaupapa Maori research privileges Maori worldviews and indigenous knowledge systems.) RESULTS: Digital storytelling is an appropriate method as Māori is an oral/aural society. It allows Māori to share their stories with others, thus promoting community support at the end of life, befitting a public health approach. CONCLUSION: Digital storytelling can be a useful method for Māori to express their experiences providing end of life caregiving.

The decision-making of the Mental Health Review Tribunal in New Zealand.

This article reports the findings of a qualitative research project that explored the decision-making of the Mental Health Review Tribunal in New Zealand, providing "thick descriptions" of the hearing process by closely focusing not only on the content of final written decisions, but also how decisions are made and delivered within the context they are formed. Drawing on interviews with tribunal members (n = 14), observation of hearings (n = 11), and review of written decisions (n = 60), the article illustrates how the MHRT attempts to practise in a way that enhances rather than damages ongoing relationships between applicants and clinicians. The factors that constrain its ability to conduct a hearing perceived as fair and participatory by the applicants is considered, and synergies with the international literature are noted in relation to the heavy use of medico-legal language, dominance of public safety concerns, and the covert interventionist practices of the MHRT. The article concludes by highlighting the value of qualitative observations of this decision-making body. While written decisions provide a justification for the outcome decided by the MHRT it leaves out nuances gleaned from in-depth clinical reporting, inquisitorial investigation and unwritten observations during hearings.