More than prevention: early adoption of HIV pre-exposure prophylaxis (PrEP) by gay and bisexual men in New Zealand.

Pre-exposure prophylaxis (PrEP) minimises HIV risk and New Zealand was one of the first countries to publicly fund PrEP in 2018. However, no studies have explored in-depth the experience and meaning of living 'on PrEP' among individuals at elevated risk of HIV, such as gay and bisexual men. This qualitative study builds on findings from the NZPrEP demonstration project of early PrEP-adopting gay and bisexual men in Auckland, New Zealand. We interviewed 10 of the 150 NZPrEP participants using an ethnicity equity quota (five European ethnicities and five non-European ethnicities). A phenomenologically-inspired thematic analysis was conducted. We identified three themes. The first, Trusting in the Pill, focuses on the relationship between PrEP and its user, while the second theme, A Liberation of Sorts, details the freedom PrEP offered men, sexually, mentally and socially. The final theme, Reframing Risk, explores the risk perceptions and the conflicting discourses surrounding gay and bisexual men using PrEP. This first qualitative study in New Zealand about the experiences of PrEP early-adopters suggests that the role of PrEP extends well beyond HIV prevention and, for many, involves redefining safe sex even in a country with historically high levels of condom promotion and low HIV incidence.

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.

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.

Joy, Jobs, and Sweat: Older Adults' Physical Activity During COVID-19 Lockdowns in New Zealand.

This qualitative narrative correspondence study investigates older adults' experiences of physical activity (PA) during the 2020 COVID-19 pandemic lockdowns in Aotearoa, New Zealand. This paper presents a reflexive thematic analysis of 501 letters received from 568 participants that discussed PA. Participants described PA as bringing joy and rhythm to daily life under stay-at-home measures. The most frequently discussed forms of PA included exercising, gardening, and housework. Four interconnected conceptual themes identified were as follows: (a) renegotiating environmental relationships, (b) social connection, (c) pleasure and PA, and (d) navigating active aging discourses. This paper emphasizes the important environmental and social motivations for becoming and remaining physically active despite restrictions on movement. Older adults' understandings and performance of PA were heavily shaped by active aging discourses. As such, we suggest that initiatives seeking to promote PA should foreground older adults' feelings of connection, productivity, and pleasure and recognize their diversity. This is contrary to current recommendations focused on duration or intensity of older adults' PA.

Cultural context in New Zealand: incorporating kaupapa Maori values in clinical research and practice.

We examined the importance of understanding and incorporating cultural context within Aotearoa/New Zealand when engaging in clinical research and practice. This paper reports on the qualitative findings of a mixed methods study aimed at determining what effect a cardiac risk reduction exercise and lifestyle management programme, embedded within a kaupapa Maori methodological approach, had on Maori participants. This methodology saw participants able to redevelop a western model cardiac risk reduction programme by introducing a Maori worldview. Our study revealed how the kaupapa Maori approach empowered participants to examine and evaluate not only their own health and lifestyle choices, but those of family and the wider community. Combining biomedical and kaupapa Maori components into the programme was found to benefit participants' mental, physical, spiritual and family well-being.

Predictive factors for entry to long-term residential care in octogenarian Maori and non-Maori in New Zealand, LiLACS NZ cohort.

BACKGROUND: Long-term residential care (LTC) supports the most vulnerable and is increasingly relevant with demographic ageing. This study aims to describe entry to LTC and identify predictive factors for older Maori (indigenous people of New Zealand) and non-Maori. METHODS: LiLACS-NZ cohort project recruited Maori and non-Maori octogenarians resident in a defined geographical area in 2010. This study used multivariable log-binomial regressions to assess factors associated with subsequent entry to LTC including: self-identified ethnicity, demographic characteristics, self-rated health, depressive symptoms and activities of daily living [ADL] as recorded at baseline. LTC entry was identified from: place of residence at LiLACS-NZ interviews, LTC subsidy, needs assessment conducted in LTC, hospital discharge to LTC, and place of death. RESULTS: Of 937 surveyed at baseline (421 Maori, 516 non-Maori), 77 already in LTC were excluded, leaving 860 participants (mean age 82.6 +/- 2.71 years Maori, 84.6 +/- 0.52 years non-Maori). Over a mean follow-up of 4.9 years, 278 (41% of non-Maori, 22% of Maori) entered LTC; of the 582 who did not, 323 (55%) were still living and may yet enter LTC. In a model including both Maori and non-Maori, independent risks factors for LTC entry were: living alone (RR = 1.52, 95%CI:1.15-2.02), self-rated health poor/fair compared to very good/excellent (RR = 1.40, 95%CI:1.12-1.77), depressive symptoms (RR = 1.28, 95%CI:1.05-1.56) and more dependent ADLs (RR = 1.09, 95%CI:1.05-1.13). For non-Maori compared to Maori the RR was 1.77 (95%CI:1.39-2.23). In a Maori-only model, predictive factors were older age and living alone. For non-Maori, factors were dependence in more ADLs and poor/fair self-rated health. CONCLUSIONS: Non-Maori participants (predominantly European) entered LTC at almost twice the rate of Maori. Factors differed between Maori and non-Maori. Potentially, the needs, preferences, expectations and/or values may differ correspondingly. Research with different cultural/ethnic groups is required to determine how these differences should inform service development.

Recommendations for Virtual Qualitative Health Research During a Pandemic.

Qualitative health research has been uniquely affected by the COVID-19 pandemic. Various public health directives will likely remain in place until this pandemic is fully controlled, creating long-lasting impacts on the design and conduct of qualitative health research. Virtual qualitative research provides an alternative to traditional interviews or focus groups and can help researchers adhere to public health directives. In this commentary, we respond to methodological needs created by the COVID-19 pandemic. Specifically, we explore unique elements of, and recommendations for, the design and conduct of obtrusive virtual qualitative research (online interviews, online focus groups, and email interviews) and demonstrate crucial ethical, recruitment, analytical, and interpretive considerations. Researchers are currently faced with an ethical imperative to advance virtual qualitative research methods and ensure that rigorous qualitative health research continues during this pandemic and beyond. Our discussions provide a starting point for researchers to explore the potential of virtual qualitative research.

'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.

Understandings of disease among Pacific peoples with diabetes and end-stage renal disease in New Zealand.

BACKGROUND: Compared with New Zealand Europeans, Pacific peoples in New Zealand develop type 2 diabetes at a higher rate and a younger age, and have 3.8 times higher incidence of end-stage renal disease (ESRD). OBJECTIVE: To investigate contextual factors that shape understandings of disease for Pacific peoples with diabetes and ESRD. METHODS: Focussed ethnography. In-depth interviews were conducted with 16 Pacific people on haemodialysis for diabetic ESRD, in Auckland, New Zealand. Study participants aged between 30 and 69 years old were of Samoan, Cook Islander, Tongan, Niuean or Tokelauan ethnicity. Thematic analysis was used to code and identify themes. RESULTS: Participants were embedded in a multigenerational legacy of diabetes. The limited diabetes-related education of earlier generations influenced how future generations behaved and understood diabetes. Perceptions were compounded by additional factors including the invisibility of early-stage diabetes; misunderstandings of health risks during communication with health providers; and misunderstandings of multiple conditions' symptoms and management. Participants had limited engagement with health services until their diagnosis of ESRD acted as a trigger to change this behaviour. However, this trigger was not effective in itself-rather, it was in combination with relevant education delivered in a way that made sense to participants, given their current understandings. CONCLUSIONS: Illness representations drive choices and behaviours with respect to self-management of diabetes and engagement with health services. Diabetes is often present in multiple generations of Pacific people; therefore, illness representations are developed and shared within a family. Changing illness representations requires engagement with the individual within a family context.

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.

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.

Ethnic and Gender Differences in Preferred Activities among Maori and non-Maori of Advanced age in New Zealand.

This study explored active aging for older Maori and non-Maori by examining their self-nominated important everyday activities. The project formed part of the first wave of a longitudinal cohort study of aging well in New Zealand. Maori aged 80 to 90 and non-Maori aged 85 were recruited. Of the 937 participants enrolled, 649 answered an open question about their three most important activities. Responses were coded under the World Health Organization's International Classification of Functioning, Disability and Health (ICF), Activities and Participation domains. Data were analyzed by ethnicity and gender for first in importance, and all important activities. Activity preferences for Maori featured gardening, reading, walking, cleaning the home, organized religious activities, sports, extended family relationships, and watching television. Gendered differences were evident with walking and fitness being of primary importance for Maori men, and gardening for Maori women. Somewhat similar, activity preferences for non-Maori featured gardening, reading, and sports. Again, gendered differences showed for non-Maori, with sports being of first importance to men, and reading to women. Factor analysis was used to examine the latent structural fit with the ICF and whether it differed for Maori and non-Maori. For Maori, leisure and household activities, spiritual activities and interpersonal interactions, and communicating with others and doing domestic activities were revealed as underlying structure; compared to self-care, sleep and singing, leisure and work, and domestic activities and learning for non-Maori. These findings reveal fundamental ethnic divergences in preferences for active aging with implications for enabling participation, support provision and community design.

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.

Understanding anger with New Zealand-born Samoan youth: A Samoan qualitative exploration.

OBJECTIVE: Understanding New Zealand-Samoan young people's experiences and definitions of anger. METHODS: Focus group talanoa (discussions) with 12 New Zealand-born Samoan young people guided by 'Teu le Va' methodology. We used a culturally informed thematic analysis approach. RESULTS: Participants defined anger as a 'bottled up' emotion and emphasised understanding cultural contexts that normalised covert and passive ways of expressing anger. Other key themes around anger we identified included experiencing multiple layers of racism and disconnection in westernised social spaces and pressures to juggle traditional Samoan and western identities. Participants also explored gendered expressions of anger. Communicating anger was important, but not in ways that harm communal values. CONCLUSIONS: Culturally appropriate qualitative research helps understand complex cultural determinants of mental health and wellbeing and suicidal behaviour. IMPLICATIONS FOR PUBLIC HEALTH: We must recognise the positive, polycultural capital of a generation that navigates many cultural spaces, including their emotional expressions. Anger should be understood in relation to cultural and societal pressures. Improved understanding of the cultural context of anger can inform systemic responses during crises in mental health and prevention of suicidality.

The timescapes of older adults living alone and receiving home care: An interview study.

In this study, we drew on Barbara Adam's (1998) timescape perspective and applied a timescape lens to our analysis of how nine older adults who live alone, receive home care and are considered by home care professionals to be frail, experience living (in) time. Over a period of eight months, we conducted three interviews with each of the nine participants. We analysed the data using reflexive thematic analysis and drew on timescapes to further interpret our preliminary analysis. Our results show that situated everyday time, place across time, and large-scale time interact in the framing and shaping of older adults' everyday lives. Older adults' embodied experiences of being of advanced age, living alone and receiving home care influenced their timescapes. We propose that paying attention to older adults' timescapes can enable home care professionals and other supporters to consider older adults' health, well-being, vulnerabilities and strengths from a broader perspective than the 'here and now' and thereby enhance the provision of person-centred care.