A multistate transition model of changes in loneliness and carer stress among community-dwelling older adults in Aotearoa New Zealand.

OBJECTIVES: To identify changes in loneliness and carer stress between two time points for older people of different ethnicities who had repeated interRAI home care assessments. METHODS: Participants consisted of community-dwelling older adults across New Zealand who received two interRAI-HC assessments between 5 July 2012 and 31 December 2019. Two multistate models were developed: the first model was not lonely versus lonely, and the second model was no carer stress versus carer stress. The one-year transition probabilities were calculated. Mean sojourn times were calculated for each state except death. Paired t-tests assessed the differences in transition probabilities between the different ethnic groups. RESULTS: The mean age of the cohort was 82.5 years (SD 7.7 years). At first assessment, 14,646 (21%) older people stated they were lonely and 26,789 carers (38%) experienced stress. The most common first transition type was not lonely to not lonely: Maori 42%, Pacific 54%, Asian, 48% and Other 40%. The highest one-year transition probability in the loneliness model was living in aged residential care to death (0.79). The most common first transition type for the carer stress was no carer stress to no carer stress: Maori 35%, Pacific, 46%, Asian, 43% and Other 33%. The highest one-year transition probability in the carer stress model was living in aged residential care to death (0.80). The statuses not lonely and no carer stress had a mean sojourn time of approximately one year, and eight months to one year, respectively. CONCLUSIONS: Loneliness can change over time due to circumstances and an individual's perception of loneliness at the time of assessment. Carer stress is enduring and has a low probability of improvement.

Carer distress among community living older adults with complex needs in the pre- and post-COVID-19 era: a national population study.

Carer distress is one important negative impact of caregiving and likely exacerbated by the novel coronavirus disease 2019 (COVID-19) pandemic, yet little population-based epidemiological information exists. Using national data from repeated standardized comprehensive geriatric needs assessments, this study aims to: describe the pattern of caregiver distress among those providing informal care to community-living adults aged ≥ 65 years with complex needs in New Zealand over time; estimate the COVID-19 effect on this temporal pattern; and, investigate relationships between participants' sociodemographic and selected health measures on caregiver distress. Fractional polynomial regression and multivariable multilevel mixed-effects models were employed. Overall, 231,277 assessments from 144,358 participants were analysed. At first assessment, average age was 82.0 years (range 65-107 years), and 85,676 (59.4%) were female. Carer distress prevalence increased from 35.1% on 5 July 2012 to a peak of 48.5% on 21 March 2020, when the New Zealand Government announced a national lock-down. However, the population attributional fraction associated with the COVID-19 period was small, estimated at 0.56% (95% CI 0.35%, 0.77%). Carer distress is common and has rapidly increased in recent years. While significant, the COVID-19 impact has been relatively small. Policies and services providing efficacious on-going strategies to support caregivers deserves specific attention.

Caregiving, ethnicity and gender in Maori and non-Maori New Zealanders of advanced age: Findings from LiLACS NZ Kaiawhina (Love and Support) study.

OBJECTIVE: This study investigates sex and ethnicity in relationships of care using data from Wave 4 of LiLACS NZ, a longitudinal study of Maori and non-Maori New Zealanders of advanced age. METHODS: Informal primary carers for LiLACS NZ participants were interviewed about aspects of caregiving. Data were analysed by gender and ethnic group of the LiLACS NZ participant. RESULTS: Carers were mostly adult children or partners, and three-quarters of them were women. Maori and men received more hours of care with a higher estimated dollar value of care. Maori men received the most personal care and household assistance. Carer employment, self-rated health, quality of life and impact of caring did not significantly relate to the gender and ethnicity of care recipients. CONCLUSIONS: Gender and ethnicity are interwoven in caregiving and care receiving. Demographic differences and cultural expectations in both areas must be considered in policies for carer support.

Evaluating the Influence of Social Factors on Aged Residential Care Admission in a National Home Care Assessment Database of Older Adults.

OBJECTIVES: Evaluate the influence of social factors on admission to aged residential care (ARC) facilities using a national comprehensive geriatric assessment database in New Zealand. DESIGN: Time-to-event analysis of a continuously recruited national cohort. PARTICIPANTS AND SETTING: An anonymized data extract from a large national database for home care assessments (June 2012-December 2015) was matched with data on mortality and admissions into ARC. METHODS: Four key components of psychosocial risk in relation to ARC admission were used for analysis: living alone, negative social interactions, perceived loneliness, and carer stress. Exploratory data analysis was conducted for each of the variables of interest and demographics. Unadjusted and adjusted competing risk regressions were then performed with admission into ARC being the primary outcome, death the competing risk, and remaining at home the survival case. RESULTS: After data cleaning, matching, and applying exclusions, the study population consisted of 54,345 eligible participants. Mean age of participants was 81.9 years (standard deviation 7.4), 62.1% were female, and 88.7% identified as European ethnicity. In the adjusted model, all 4 social factors remained significantly associated with ARC admission, namely: living alone [subhazard ratio (SHR) = 1.43 95% confidence interval (CI) 1.37-1.50]; negative social interactions (SHR = 1.22, 95% CI 1.15-1.30); perceived loneliness (SHR = 1.18, 95% CI 1.13-1.24); and carer stress (SHR = 1.28, 95% CI 1.23-1.34). CONCLUSIONS AND IMPLICATIONS: Interventions targeted at social factors in the context of delaying ARC admission merit further development and evaluation.

Ageing, loneliness, and the geographic distribution of New Zealand's interRAI-HC cohort.

Loneliness is a significant negative predictor of ageing well and a contra-indicator for resilience against requiring long-term residential care. Health geographers can contribute to the loneliness and ageing literature through examining how exposures in the physical and social landscape can affect positive and negative health outcomes. As well as improving individual experiences of ageing, spatial analysis may help to contribute to better understandings of loneliness and help reduce the $1.7 billion per annum New Zealand currently spends on publicly-funded aged residential care. Using New Zealand Home Care International Residential Assessment Instrument data from 2012 to 2016, the spatial distribution of the interRAI-HC cohort was examined. Urban and rural distribution, socioeconomic status, and ethnicity within the interRAI-HC cohort was compared against total population and population aged 65 plus. Relative to the socioeconomic status of the 65 plus cohort, those being interRAI-HC assessed were more likely to live in socially deprived areas. Socioeconomic deprivation also positively correlated with loneliness (OR = 1.002). Carer stress was negatively correlated with socioeconomic status (OR = 0.99). Those in rural areas were predicted to be less lonely than urban dwellers (OR = 0.98), and this observation remained similar and significant when socioeconomic status, the experience of negative social interactions or carer stress, and whether they lived alone were included. Living in rural areas had a protective effect against loneliness for all ethnic groups apart from Pasifika. 'Hot' and 'cold' clusters of loneliness were identified, with the distribution of interRAI-HC assessments in hot clusters less likely to be rural areas (OR = 0.71). Our findings did not diverge greatly from prior research on older people and loneliness in rural areas. Observations of regional differences regarding rurality and socioeconomic status did not show large differences, and this research will benefit in future from analysis at finer geographic scale.

Profile of ethnicity, living arrangements and loneliness amongst older adults in Aotearoa New Zealand: A national cross-sectional study.

OBJECTIVE: To explore the patterns of living arrangements, ethnicity and loneliness amongst older adults (aged 65+ years) living at home. METHODS: National interRAI-HC (International Residential Assessment Instrument-Home Care) assessments conducted between 1 September 2012 and 31 January 2016 were analysed. Analysis focused on the associations between loneliness and both ethnic groups and living arrangements. RESULTS: There were 71 859 eligible participants, with average age 82.7 years, comprising Maori (5%), Pasifika (3%), Asian (2%) and European/Other (89%) ethnic identification. Most stated that they were not lonely (79%), but those living alone were more likely to be lonely (29%) than those living with others (14%) (P < 0.05). Amongst those living alone, significant differences in the likelihood of being lonely emerged between ethnic groups (P < 0.05). CONCLUSIONS: Ethnic identification and living arrangements were significantly associated with the likelihood of loneliness for those having an interRAI-HC assessment. Efforts to reduce the negative impacts of loneliness need a nuanced approach.

Age-related patterns in work-related injury claims from older New Zealanders, 2009-2013: Implications of injury for an aging workforce.

OBJECTIVES: This study describes the incidence, nature and cause of work-related injuries in older New Zealand workers to understand the risks of work-related injury in this rapidly aging population. METHODS: Data for the period 2009-2013 from 25,455 injured workers aged 55-79 years, extracted from national work-related injury entitlement claims, were stratified by age group and analysed by sex, industry, injury type and cause. Age-specific claims rates were calculated by year, sex and ethnicity. RESULTS: Patterns of injury differed by age: 70-79 year olds had the highest injury rates and proportion of claims due to falls (45%), for the self-employed (32%), for the agriculture sector (24%), and for fatal injuries (5%). DISCUSSION: The burden of work-related injuries in older workers, particularly in those aged over 70, will increase with their increasing participation in work. Workplace injury prevention strategies and interventions need to consider the specific characteristics and vulnerabilities of older workers.

Reconciling Work and Caregiving Responsibilities among Older Workers in New Zealand.

There are 432,000 individuals in New Zealand who provide unpaid care for someone who is ill or disabled and 65% of these carers are also in paid employment. The number of older people in the paid workforce is projected to increase in the next two decades. With the median age of carers in 2013 at 49 years, the ageing of both the population and workforce suggests that many carers may still be in paid work as they themselves age. Family care is an essential part of the health care system. Informal care provides many benefits including improved patient outcomes, reduced unnecessary re-hospitalisations and residential care placements, and considerable savings in health care expenditure. However, combining paid work and informal care is problematic for many carers and can impact on their health and wellbeing, and on work-related outcomes by way of reduced work hours, absenteeism, and employment exit. Recent policy initiatives have been implemented to support family carers in New Zealand to remain in or re-enter the workforce. This paper explores the challenges presented to older New Zealanders who combine paid work with caregiving responsibilities. We provide a profile of older workers (aged 55+) who are providing care and analyse the impact of combining paid work and care on their health, wellbeing and economic living standards. Finally, we situate these findings within the policy framework in New Zealand.

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.

Being-in-the-Chemotherapy-Suite versus Being-in-the-Oncology-Ward: An Analytical View of Two Hospital Sites Occupied by People Experiencing Cancer.

How do people with cancer occupy places within the health system during their journey through palliative care? The answer to this question was explored by the authors as part of a wider ethnographic study of eight people's journeys from referral to palliative care services to the end of life. This article reports on findings that have emerged from ongoing analysis that has been completed in the years proceeding data collection. An ethnographic research design was used to collect data about the participants and their family members over a three-year period. Data was collected using participant observation and semi-structured interviews. Over 380 transcripts based on field note entries and taped interviews were produced during the 1121 h of contact with participants and family members that made up the research period. Analysis of these texts identified two focal sites within Christchurch Hospital that were occupied by the participants. These were the Chemotherapy Suite and the Oncology Ward. Drawing on literature concerning previous anthropological analysis, research was conducted to understand how places affect people and how people affect places. The researchers have used a model outlined by the American ethnographer Miles Richardson to analyse two distinct sites within one hospital. As explained in Richardson's article, whose title is used to model the title of this article, a sense of place becomes apparent when comparing and contrasting two sites within the same location. Richardson's article is highly interpretative and relies not only on pre-existing theoretical frameworks but also on personal interpretation. The same approach has been used in the current article. Here, ethnographic methods require the researcher's interpretation of how participants occupied these sites. Following this approach, the Chemotherapy Suite is presented as a place where medicine dominates illness, and appears as distinct from the Oncology Ward, where disease predominates and death is secreted away.

The 'wayfinding' experience of family carers who learn to manage technical health procedures at home: a grounded theory study.

BACKGROUND: With more care taking place in the home, family carers play an important role in supporting patients. Some family carers undertake technical health procedures generally managed by health professionals in hospital settings (e.g. managing a tracheostomy or enteral feeding). AIM: To explore how family carers learn to manage technical health procedures in order to help health professionals better understand and support this process. DESIGN AND METHODS: A grounded theory study using data from interviews with 26 New Zealand family carers who managed technical health procedures including nasogastric or gastrostomy feeding, stoma care, urinary catheterisation, tracheostomy management, intravenous therapy, diabetes management and complex wound dressings. Most (20 participants) were caring for their child and the remaining six for their spouse, parent or grandparent. Following grounded theory methods, each interview was coded soon after completion. Additional data were compared with existing material, and as analysis proceeded, initial codes were grouped into higher order concepts until a core concept was developed. Interviewing continued until no new ideas emerged and concepts were well defined. FINDINGS: The core concept of 'wayfinding' indicates that the learning process for family carers is active, individualised and multi-influenced, developing over time as a response to lived experience. Health professional support was concentrated on the initial phase of carers' training, reducing and becoming more reactive as carers took responsibility for day-to-day management. CONCLUSION: Wayfinding involves self-navigation by carers, in contrast to patient navigator models which provide continuing professional assistance to patients receiving cancer or chronic care services. Wayfinding by carers raises questions about how carers should be best supported in their initial and ongoing learning as the management of these procedures changes over time.

Socioeconomic correlates of quality of life for non-Maori in advanced age: Te Puawaitanga o Nga Tapuwae Kia ora Tonu. Life and Living in Advanced Age: a Cohort Study in New Zealand (LiLACS NZ).

AIM: To establish socioeconomic and cultural profiles and correlates of quality of life (QoL) in non-Maori of advanced age. METHOD: A cross sectional analysis of the baseline data of a cohort study of 516 non-Maori aged 85 years living in the Bay of Plenty and Rotorua areas of New Zealand. Socioeconomic and cultural characteristics were established by face-to-face interviews in 2010. Health-related QoL (HRQoL) was assessed with the SF-12. RESULTS: Of the 516 non-Maori participants enrolled in the study, 89% identified as New Zealand European, 10% other European, 1% were of Pacific, Asian or Middle Eastern ethnicity; 20% were born overseas and half of these identified as 'New Zealand European.' More men were married (59%) and more women lived alone (63%). While 89% owned their own home, 30% received only the New Zealand Superannuation as income and 22% reported that they had 'just enough to get along on'. More than 85% reported that they had sufficient practical and emotional support; 11% and 6% reported unmet need for practical and emotional support respectively. Multivariate analyses showed that those with unmet needs for practical and emotional support had lower mental HR QoL (p<0.005). Reporting that family were important to wellbeing was associated with higher mental HR QoL (p=0.038). Those that did not need practical help (p=0.047) and those that reported feeling comfortable with their money situation (0.0191) had higher physical HRQoL. High functional status was strongly associated with both high mental and high physical HR QoL (p<0.001). CONCLUSION: Among our sample of non-Maori people of advanced age, those with unmet support needs reported low HRQoL. Functional status was most strongly associated with mental and physical HRQoL.

People ageing with spinal cord injury in New Zealand: a hidden population? The need for a spinal cord injury registry.

AIMS: To identify and establish a research database of ageing New Zealand people who sustained a traumatic or non-traumatic spinal cord injury (SCI) before 1990. METHODS: All living New Zealand residents incurring a SCI before 1 January 1990 were eligible. A co-ordinated consultation with apposite New Zealand organisations was undertaken to identify and access existing SCI databases, and remove duplicate or ineligible records. RESULTS: 1,400 people were identified. Using the national patient information management system to determine eligibility, 1,174 people remained after exclusions; 600 (51.1%) through the Auckland Spinal Rehabilitation Unit and 574 (48.9%) through the Burwood Spinal Unit. Common to both databases were people's National Health Index number, contact details, basic demographic data, date of injury, and neurological level of SCI. CONCLUSIONS: An unexpectedly large SCI population was uncovered; a population largely hidden due to the uncoordinated, fragmented and inconsistently collected information held within different organisations. As life expectancy rapidly increases for those with SCI, coupled with an accelerated ageing general population, this hidden SCI population can be expected to grow. A single, well-managed and coordinated national SCI registry is urgently needed in New Zealand for planning and delivery of services, especially for those developing age-related complex interwoven secondary conditions.

Comprehensive clinical assessment of home-based older persons within New Zealand: an epidemiological profile of a national cross-section.

OBJECTIVE: Since 2012, all community care recipients in New Zealand have undergone a standardised needs assessment using the Home Care International Residential Assessment Instrument (interRAI-HC). This study describes the national interRAI-HC population, assesses its data quality and evaluates its ability to be matched. METHODS: The interRAI-HC instrument elicits information on 236 questions over 20 domains; conducted by 1,800+ trained health professionals. Assessments between 1 July 2012 and 30 June 2014 are reported here. Stratified by age, demographic characteristics were compared to 2013 Census estimates and selected health profiles described. Deterministic matching to the Ministry of Health's mortality database was undertaken. RESULTS: Overall, 51,232 interRAI-HC assessments were conducted, with 47,714 (93.1%) research consent from 47,236 unique individuals; including 2,675 Maori and 1,609 Pacific people. Apart from height and weight, data validity and reliability were high. A 99.8% match to mortality data was achieved. CONCLUSIONS: The interRAI-HC research database is large and ethnically diverse, with high consent rates. Its generally good psychometric properties and ability to be matched enhances its research utility. IMPLICATIONS: This national database provides a remarkable opportunity for researchers to better understand older persons' health and health care, so as to better sustain older people in their own homes.

Decision-Making About Upper Limb Tendon Transfer Surgery by People With Tetraplegia for More Than 10 Years.

OBJECTIVES: To quantify time from spinal cord injury to upper limb reconstructive surgery for individuals with tetraplegia; to explore influences on decision-making about surgery for persons with long-standing (>10y) tetraplegia; and to determine the applicability of our previously developed conceptual framework that described the decision-making processes for people with tetraplegia of <5 years. DESIGN: Quantitative-qualitative mixed-methods study. SETTING: Community based in New Zealand. PARTICIPANTS: People (N=9) living with tetraplegia for >10 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: An audit of time frames between injury, assessment, and surgery for people with tetraplegia was undertaken. Interviews of people with tetraplegia were analyzed using constructivist grounded theory. RESULTS: Sixty-two percent of people with tetraplegia assessed for surgery had upper limb reconstructive surgery. Most were assessed within the first 3 years of spinal cord injury. Over half had surgery within 4 years after injury; however, 20% waited >10 years. Changes in prioritized activities, and the identification of tasks possible with surgery, were influential in the decision-making process. Participants were aware of surgery, but required a reoffer from health professionals before proceeding. The influence of peers was prominent in reinforcing the improvement in prioritized activities possible after surgery. CONCLUSIONS: Findings confirmed that the previously developed conceptual framework for decision-making about upper limb reconstructive surgery was applicable for people with tetraplegia of >10 years. Similarities were seen in the influence of goals and priorities (although the nature of these might change) and information from peers (although this influence was greater for those injured longer). Repeat offers for surgery were required to allow for changes in circumstances over time.

Becoming an expert carer: the process of family carers learning to manage technical health procedures at home.

AIMS: To describe the learning process of family carers who manage technical health procedures (such as enteral tube feeding, intravenous therapy, dialysis or tracheostomy care) at home. BACKGROUND: Increasingly, complex procedures are being undertaken at home but little attention has been paid to the experiences of family carers who manage such procedures. DESIGN: Grounded theory, following Charmaz's constructivist approach. METHODS: Interviews with 26 family carers who managed technical health procedures and 15 health professionals who taught carers such procedures. Data collection took place in New Zealand over 19 months during 2011-2013. Grounded theory procedures of iterative data collection, coding and analysis were followed, with the gradual development of theoretical ideas. FINDINGS: The learning journey comprised three phases: (1) an initial, concentrated period of training; (2) novice carers taking responsibility for day-to-day care of procedures while continuing their learning; and (3) with time, experience and ongoing self-directed learning, the development of expertise. Teaching and support by health professionals (predominantly nurses) was focussed on the initial phase, but carers' learning continued throughout, developed through their own experience and using additional sources of information (notably the Internet and other carers). CONCLUSION: Further work is needed to determine the best educational process for carers, including where to locate training, who should teach them, optimal teaching methods and how structured or individualized teaching should be. Supporting carers well also benefits patient care.

How family carers engage with technical health procedures in the home: a grounded theory study.

OBJECTIVES: To explore the experiences of family carers who manage technical health procedures at home and describe their learning process. DESIGN: A qualitative study using grounded theory. PARTICIPANTS: New Zealand family carers (21 women, 5 men) who managed technical health procedures such as enteral feeding, peritoneal dialysis, tracheostomy care, a central venous line or urinary catheter. In addition, 15 health professionals involved in teaching carers were interviewed. METHODS: Semistructured interviews were coded soon after completion and preliminary analysis influenced subsequent interviews. Additional data were compared with existing material and as analysis proceeded, initial codes were grouped into higher order concepts until a core concept was described. Interviewing continued until no new ideas emerged and concepts were well defined. RESULTS: The response of carers to the role of managing technical health procedures in the home is presented in terms of five dispositions: (1) Embracing care, (2) Resisting, (3) Reluctant acceptance, (4) Relinquishing and (5) Being overwhelmed. These dispositions were not static and carers commonly changed between them. Embracing care included cognitive understanding of the purpose and benefits of a procedure; accepting a 'technical' solution; practical management; and an emotional response. Accepting embrace is primarily motivated by perceived benefits for the recipient. It may also be driven by a lack of alternatives. Resisting or reluctant acceptance results from a lack of understanding about the procedure or willingness to manage it. Carers need adequate support to avoid becoming overwhelmed, and there are times when it is appropriate to encourage them to relinquish care for the sake of their own needs. CONCLUSIONS: The concept of embracing care encourages health professionals to extend their attention beyond simply the practical aspects of technical procedures to assessing and addressing carers' emotional and behavioural responses to health technology during the training process.

Cultural and social factors and quality of life of Maori in advanced age. Te puawaitanga o nga tapuwae kia ora tonu - Life and living in advanced age: a cohort study in New Zealand (LiLACS NZ).

AIM: To establish 1) the socioeconomic and cultural profile and 2) correlates of quality of life (QOL) of Maori in advanced age. METHOD: A cross sectional survey of a population based cohort of Maori aged 80-90 years, participants in LiLACS NZ, in the Rotorua and Bay of Plenty region of New Zealand. Socioeconomic and cultural engagement characteristics were established by personal interview and QOL was assessed by the SF-12. RESULTS: In total 421 (56%) participated and 267 (63%) completed the comprehensive interview. Maori lived with high deprivation areas and had received a poor education in the public system. Home ownership was high (81%), 64% had more than 3 children still living and social support was present for practical tasks and emotional support in 82%. A need for more practical help was reported by 21%. Fifty-two percent of the participants used te reo Maori me nga tikanga (Maori language and culture) daily. One in five had experienced discrimination and one in five reported colonisation affecting their life today. Greater frequency of visits to marae/sacred gathering places was associated with higher physical health-related QOL. Unmet need for practical help was associated with lower physical health-related QOL. Lower mental health-related QOL was associated with having experienced discrimination. CONCLUSION: Greater language and cultural engagement is associated with higher QOL for older Maori and unmet social needs and discrimination are associated with lower QOL.