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.

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.

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.

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.

Life and living in advanced age: a cohort study in New Zealand--e Puawaitanga o Nga Tapuwae Kia Ora Tonu, LiLACS NZ: study protocol.

BACKGROUND: The number of people of advanced age (85 years and older) is increasing and health systems may be challenged by increasing health-related needs. Recent overseas evidence suggests relatively high levels of wellbeing in this group, however little is known about people of advanced age, particularly the indigenous Maori, in Aotearoa, New Zealand. This paper outlines the methods of the study Life and Living in Advanced Age: A Cohort Study in New Zealand. The study aimed to establish predictors of successful advanced ageing and understand the relative importance of health, frailty, cultural, social & economic factors to successful ageing for Maori and non-Maori in New Zealand. METHODS/DESIGN: A total population cohort study of those of advanced age. Two cohorts of equal size, Maori aged 80-90 and non-Maori aged 85, oversampling to enable sufficient power, were enrolled. A defined geographic region, living in the Bay of Plenty and Lakes District Health Board areas of New Zealand, defined the sampling frame. Runanga (Maori tribal organisations) and Primary Health Organisations were subcontracted to recruit on behalf of the University. Measures--a comprehensive interview schedule was piloted and administered by a trained interviewer using standardised techniques. Socio-demographic and personal history included tribal affiliation for Maori and participation in cultural practices; physical and psychological health status used standardised validated research tools; health behaviours included smoking, alcohol use and nutrition risk; and environmental data included local amenities, type of housing and neighbourhood. Social network structures and social support exchanges are recorded. Measures of physical function; gait speed, leg strength and balance, were completed. Everyday interests and activities, views on ageing and financial interests complete the interview. A physical assessment by a trained nurse included electrocardiograph, blood pressure, hearing and vision, anthropometric measures, respiratory function testing and blood samples. DISCUSSION: A longitudinal study of people of advanced age is underway in New Zealand. The health status of a population based sample of older people will be established and predictors of successful ageing determined.

Nursing contribution to the rehabilitation of older patients: patient and family perspectives.

AIMS: This article reports a study of the perspective of older patients and their family members on the role of nurses in inpatient rehabilitation. BACKGROUND: Rehabilitation services are used increasingly by older patients as life expectancy increases. The role of rehabilitation nurses in the multidisciplinary team has, however, yet to be clearly articulated. Previous research has focussed on the views of health professionals about nursing involvement in rehabilitation, but none has sought family members' perspectives. With the expectation of patient-centred care, it is important to consider what older patients and their families expect and require from nurses. DESIGN: Grounded theory was used to collect and analyse data from interviews in an inpatient rehabilitation unit in New Zealand with seven patients, aged 72-89 years, and six family members, during 2009-2010. FINDINGS: A substantive theory was developed which recognizes that the older patient values the relationship they build with nurses more than any specific role nurses perform. Participants acknowledged that rehabilitation nurses' roles included 'looking after', 'stepping in' and 'coaching independence' but 'best fit' nurses were identified by patients based on their 'nature', 'being available' and 'being attuned' to the patient's individual needs. If a 'connection' was formed, then this 'best fit relationship' maximized the older person's motivation to participate in his or her rehabilitation therapy. CONCLUSION: Patients and family members appreciate 'best fit relationships' where nurses seek to enter into the older person's world of disability to form a partnership which enhances their motivation to achieve independence.

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.

Home-based activity program for older people with depressive symptoms: DeLLITE--a randomized controlled trial.

PURPOSE: We wanted to assess the effectiveness of a home-based physical activity program, the Depression in Late Life Intervention Trial of Exercise (DeLLITE), in improving function, quality of life, and mood in older people with depressive symptoms. METHODS: We undertook a randomized controlled trial involving 193 people aged 75 years and older with depressive symptoms at enrollment who were recruited from primary health care practices in Auckland, New Zealand. Participants received either an individualized physical activity program or social visits to control for the contact time of the activity intervention delivered over 6 months. Primary outcome measures were function, a short physical performance battery comprising balance and mobility, and the Nottingham Extended Activities of Daily Living scale. Secondary outcome measures were quality of life, the Medical Outcomes Study 36-item short form, mood, Geriatric Depression Scale (GDS-15), physical activity, Auckland Heart Study Physical Activity Questionnaire, and self-report of falls. Repeated measures analyses tested the differential impact on outcomes over 12 months' follow-up. RESULTS: The mean age of the participants was 81 years, and 59% were women. All participants scored in the at-risk category on the depression screen, 53% had a Diagnostic and Statistical Manual of Mental Disorders or International Classification of Diseases, Tenth Revision diagnosis of major depression or scored more than 4 on the GDS-15 at baseline, indicating moderate or severe depression. Almost all participants, 187 (97%), completed the trial. Overall there were no differences in the impact of the 2 interventions on outcomes. Mood and mental health related quality of life improved for both groups. CONCLUSION: The DeLLITE activity program improved mood and quality of life for older people with depressive symptoms as much as the effect of social visits. Future social and activity interventions should be tested against a true usual care control.

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.

Older people and their social spaces: a study of well-being and attachment to place in Aotearoa New Zealand.

A sense of belonging or attachment to place is believed to help maintain a sense of identity and well-being, and to facilitate successful adjustments in old age. Older people in particular have been shown to draw meaning and security from the places in which they live. Qualitative data from multiple conversational interviews held over the period of a year with each of 83 community-dwelling older people in Auckland within the context of a study conducted from 2006 to 2008 are interpreted to explore how older people relate to their social and physical environments, with a specific focus on attachment to place and the meaning of home. The concept of 'social space' is proposed, to capture the elastic physical, imaginative, emotional and symbolic experiences of and connections to people and place across time and in scope. Talking with older people themselves gave a rich account of attachment to place, social spaces, and well-being. Our participants had strong attachments to their homes and neighbourhoods, extensive participation in 'beyond spaces', and shrinking social worlds. They did not, however necessarily view changes as negative; instead there was a delicate negotiation of positive and negative aspects, and complex engagement with 'social space' as a profoundly meaningful construct.

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.

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.

DeLLITE depression in late life: an intervention trial of exercise. Design and recruitment of a randomised controlled trial.

BACKGROUND: Physical activity shows potential in combating the poor outcomes associated with depression in older people. Meta-analyses show gaps in the research with poor trial design compromising certainty in conclusions and few programmes showing sustained effects. METHODS/DESIGN: The Depression in Late Life: an Intervention Trial of Exercise (DeLLITE) is a 12 month randomised controlled trial of a physical activity intervention to increase functional status in people aged 75 years and older with depressive symptoms. The intervention involves an individualised activity programme based on goal setting and progression of difficulty of activities delivered by a trained nurse during 8 home visits over 6 months. The control group received time matched home visits to discuss social contacts and networks. Baseline, 6 and 12 months measures were assessed in face to face visits with the primary outcome being functional status (SPPB, NEADL). Secondary outcomes include depressive symptoms (Geriatric Depression Scale), quality of life (SF-36), physical activity (AHS Physical Activity Questionnaire) and falls (self report). DISCUSSION: Due to report in 2008 the DeLLITE study has recruited 70% of those eligible and tests the efficacy of a home based, goal setting physical activity programme in improving function, mood and quality of life in older people with depressive symptomatology. If successful in improving function and mood this trial could prove for the first time that there are long term health benefit of physical activity, independent of social activity, in this high risk group who consume excess health related costs. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Register ACTRN12605000475640.

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.

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.