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This paper reviews relevant international and New Zealand literature, policy documents and reports on respite provision for children who are dying and their families. The literature describes why respite care for children is necessary, and evaluates present respite services in accord with recent reports and literature. The service provisions needed for dying children and their families are explored, including suggestions for the improvement of services and future research. The literature reveals that, although respite care for terminally ill children and their families is necessary, service provisions are uncoordinated, not always culturally sensitive and very limited for children and their families. Improvement in paediatric respite services is necessary and research needs to be conducted in this area to facilitate the development of more appropriate respite services for children and their families.

Background: The Frailty In Residential Sector over Time (FIRST) Study is a 3-year prospective cohort study investigating the health of residents living in residential aged care services (RACS) in South Australia. The study aims to examine the change in frailty status and associated health outcomes.Methods: This interim report presents data from March 2019-October 2020. The study setting is 12 RACS from one organisation across metropolitan and rural South Australia involving 1243 residents. All permanent (i.e. respite or transition care program excluded) residents living in the RACS for at least 8 weeks were invited to participate. Residents who were deemed to be medically unstable (e.g. experiencing delirium), have less than 3 months to live, or not fluent in English were excluded. Data collected included frailty status, medical diagnoses, medicines, pain, nutrition, sarcopenia, falls, dementia, anxiety and depression, sleep quality, quality of life, satisfaction with care, activities of daily living, and life space use at baseline and 12-months. Data Linkage will occur over the 3 years from baseline.Results: A total of 561 permanent residents (mean age 87.69 ± 7.25) were included. The majority of residents were female (n = 411, 73.3%) with 95.3% (n = 527) being classified as either frail (n = 377, 68.2%) or most-frail (n = 150, 27.1%) according to the Frailty Index (FI). Most residents were severely impaired in their basic activities of daily living (n = 554, 98.8%), and were at-risk of malnutrition (n = 305, 55.0%) and at-risk of sarcopenia (n = 492, 89.5%). Most residents did not experience pain (n = 475, 85.4%), had normal daytime sleepiness (n = 385, 69.7%), and low anxiety and depression scores (n = 327, 58.9%).Conclusion: This study provides valuable information on the health and frailty levels of residents living in RACS in South Australia. The results will assist in developing interventions that can help to improve the health and wellbeing of residents in aged care services.Trial Registration: Prospectively registered with the Australian New Zealand Clinical Trials Registry ( ACTRN12619000500156 ). [ABSTRACT FROM AUTHOR]

An interview-based study of 42 people with serious mental illness was undertaken in New Zealand during the early 2000s. Of the 42 people, 10 were women. The women were either currently on a Community Treatment Order or had been recently discharged from a long period of being on a Community Treatment Order. Analysis of the original interview data revealed how these women experienced both benefits and limitations under conditions of compulsory community treatment. The women's key workers, clinicians, and nominated family members were also interviewed. The findings indicate that women considered the overall advantages of Community Treatment Orders to outweigh the disadvantages. Advantages included: greater access to treatment and respite care in hospital; and an increased sense of safety and reassurance for women and their families. Disadvantages included: some restrictions, such as where women resided; feelings of stigma; and having to comply with treatment with the threat of being returned to hospital if they did not. Overall, Community Treatment Orders made a significant impact on the lives of the 10 women but they also allowed the women to remain out of hospital long enough to rebuild their lives and maintain their close relationships. [ABSTRACT FROM AUTHOR]

South Australia releases national and international travel scholarships every year to the nursing and midwifery workforce to enable them to undertake observational site visits to inform the development of service models that can be introduced into care practices back in South Australia. Ten sites across New Zealand, Canada, and the UK agreed to host a site visit as part of a scholarship to look at day hospice (DH) programmes. The author undertook an observational study that included participation in DH programmes and discussions with staff and patients. There were many similarities across the three countries, in particular in the structure of the programmes, the staff makeup, and the support of the volunteer workforce. Two distinct models were observed: social and medical. Each has its value and both need to be incorporated to ensure services and participants have their needs met. Based on the site visits and other research, the author devised a proposal for South Australia to commence with a time-limited sessional group DH programme with a focus on maintenance of function for participants coupled with caregiver education and information provision. [ABSTRACT FROM AUTHOR]

Aims: To describe the nature and size of long-term residential care homes in New Zealand; funding of facilities; and the ethnic and gender composition of residents and residential care workers nationwide., Methods: A postal, fax, and email survey of all long-term residential care homes in New Zealand., Results: Completed surveys were received from an eligible 845 facilities (response rate: 55%). The majority of these (54%) facilities housed less than 30 residents. Of the 438 (94%) facilities completing the questions about residents' ethnicity, 432 (99%) housed residents from New Zealand European (Pakeha) descent, 156 (33%) housed at least 1 Maori resident, 71 (15%) at least 1 Pacific (Islands) resident, and 61 (13%) housed at least 1 Asian resident. Facilities employed a range of ethnically diverse staff, with 66% reporting Maori staff. Less than half of all facilities employed Pacific staff (43%) and Asian staff (33%). Registered nursing staff were mainly between 46 and 60 years (47%), and healthcare assistant staff were mostly between 25 and 45 years old (52%). Wide regional variation in the ethnic make up of staff was reported. About half of all staff were reported to have moved within the previous 2 years., Conclusions: The age and turnover of the residential care workforce suggests the industry continues to be under threat from staffing shortages. While few ethnic minority residents live in long-term care facilities, staff come from diverse backgrounds, especially in certain regions.

Aim: To describe the reported experiences of the estimated 14 500 New Zealand children with a physical disability and those of their families and whanau (extended families). Method: We have used data from the Household Disability Survey conducted in 2002 to obtain this information. Results: These children and their carers reported a number of perceived unmet needs in all areas covered in the survey: service and assistance, transport, accommodation and education. Thus an estimated 24% reported an unmet need for equipment, and 10% an unmet need for home modification. Around 9% reported having to fund respite care themselves. Of particular note was the proportion of children who had difficulties joining in games and sport at school (59%), going on school outings or camps (28%), playing at school (47%), and or making friends (35%). In all, an estimated 67% of children had one or more problems taking part at school. Conclusion: More could be done to help such families and to facilitate the full participation of these children. [ABSTRACT FROM AUTHOR]

In Aotearoa/New Zealand, finding a permanent home for a child, outside of the birth parent's care, generally occurs in the most severe cases of abuse and/or neglect. In these instances, significant care and protection concerns persist, making reunification between the child and their birth parents contrary to the child's best interests. Thus, social work efforts become centred on establishing permanent care arrangements with either whānau (extended family) or non-whānau caregivers. Creating a stable and permanent home can assist a child in recovering from the damaging effects of being exposed to abuse and/or neglect. Permanency in New Zealand is predominantly achieved through long-term fostering rather than adoption, ideally through the government's 2010 policy, Home for Life. This policy aims to support foster parents to permanently care for a child, by providing a range of supports from financial to respite care. While the policy emphasizes the importance of permanency and is designed to reach this outcome, there are significant limitations that have the ability to prevent this from occurring. This article will explore Home for Life and its limitations in achieving permanency, specifically the insufficient legal protection caregivers are afforded and the absence of post-permanency support. It will conclude by proposing changes to the policy. [ABSTRACT FROM AUTHOR]

Background: Decisions surrounding the permanent residential care placement of people living with dementia can be stressful and distressing; however, providing access to targeted information and support prior to placement may help carers better cope. This mixed methods study aimed to test the feasibility, acceptability, and potential benefits of providing a tailored, individual counselling program (the Residential Care Transition Module), delivered via videoconferencing, to Australian family carers of a relative with dementia during the transition to permanent residential care. Methods: A total of 18 family carers were randomly allocated to receive either the counselling intervention (six sessions delivered over 12 weeks) or a check-in call, delivered by a trained Transition Counsellor. Both groups received help-sheets about residential care, coping with placement, and managing feelings. Carers completed online surveys about stress, guilt, anxiety, depression, grief, and support for caring at baseline and four months post-baseline. Carers were also invited to participate in semi-structured exit interviews, conducted after follow-up surveys were completed. Process data relating to recruitment, retention, intervention dose and delivery were collected via logs. Quantitative data were analysed using descriptive statistics and repeated measures ANOVA. Qualitative data, relating to feasibility, acceptability, and perceived benefits of the program, were analysed using the 'framework' approach developed by the Medical Research Council to inform the process evaluation of complex interventions. Results: Qualitative findings indicated that delivery of the counselling program during the transition period was deemed by participants to be feasible and acceptable. Delivery via videoconferencing was deemed convenient and acceptable, with few technical issues. The skills and knowledge of the Transition Counsellor were perceived to be important mechanisms of impact. Though not statistically significant, promising quantitative findings were identified in terms of reduced carer stress and guilt and improved support for caring. Conclusions: Delivery of a tailored counselling program via videoconferencing to family carers of people living with dementia during the transition to residential care was feasible and acceptable. The program has the potential to improve transitional support to family carers. Trial registration: This study was registered in the Australian New Zealand Clinical Trials Registry: ACTRN12621001462875. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic disrupted healthcare and support services, creating challenges for disabled people. New Zealand implemented a range of policies to prevent and limit viral transmission of COVID-19. This study investigates disabled people's experiences accessing healthcare and disability support services during the COVID-19 pandemic, and based on this analysis, the implications of public health policy decisions on disabled people's experiences during the pandemic in New Zealand are explicated. A qualitative design underpinned by interpretive description methodology guided this study. A total of 64 disabled people or parents of disabled children participated in semi-structured interviews. The team of health services and disability researchers then engaged in an iterative thematic approach to analysis, which led to three key themes: (1) protective personal factors, which assisted disabled people to access healthcare and support services, (2) immediate pandemic policy impacts, including policy and legislative changes, which created additional access barriers for disabled people, and (3) exacerbating factors, including compounding vulnerabilities, overstretched systems, and the impact of the vaccine mandate, which worsened the already limited access to healthcare and disability services for disabled people. The pandemic overwhelmed an already stretched healthcare and disability support system, resulting in service disruptions with negative consequences for disabled people's health and wellbeing. Future policy development needs to be disability-centred in its inclusion of people with lived experience and consideration of the support needs of disabled populations. A first step in this process could include pandemic planning and policy co-design to ensure a continuum of healthcare services and support availability for individuals when services are disrupted. In addition, access to formal and informal support for disabled people should be recognised as a fundamental human right when accessing healthcare and disability support services. [ABSTRACT FROM AUTHOR]

Background: Because socioeconomic and cultural factors contribute to where one dies, it is important to document place of death determinants in diverse societies.Aim: The purpose of this study was to describe where persons in an Aotearoa New Zealand hospice die, and to identify factors that are associated with place of death.Design: A retrospective chart review was conducted.Setting/Participants: Data were extracted from the charts of all patients receiving services from one hospice (i.e. secondary care) for whom death occurred during 2006–2008; 1268 cases for whom place of death was recorded comprise this sample.Results: For close to half (47%), death occurred in the hospice inpatient unit, whereas 29% died at home, 8% died in an acute hospital setting, and 17% died in an aged/residential care facility. Bivariate analyses showed that persons who die in an aged/residential care facility are more likely to be aged 65 or older, unmarried, have a non-cancer diagnosis, and are likely poorer. Asians, those aged less than 65, those with cancer, and those admitted initially to hospice for respite care tended to die in the hospice inpatient unit. Multinominal logistic regression indicated that dying at home was only predicted by being from a Pacific Island.Conclusions: Age, economics, diagnosis, ethnicity, marital status, and whether one enters a hospice service for (at least in part) respite were all associated to a certain extent with where one dies. These findings contribute to the growing evidence linking various factors, especially ethnic groups, with place of death. [ABSTRACT FROM PUBLISHER]

The aims of this study were to: (a) identify New Zealand informal carers' support needs; (b) assess caregivers' depression; and (c) assess positive and negative aspects of caregiving. A sample of 287 carers from throughout New Zealand was recruited by advertisements in carer support organizations literature, in 2008. Data were collected using Centre for Epidemiologic Short Depression scale (CES-D10), Caregivers Reaction Assessment scale (CRA), and open-ended questions. Carer burden was significant (p ≤ .01) in the 60 to 69 age group. The relationship between CRA and CES-D10 in carers in the 50 to 59, 60 to 69 carer age groups; and 0 to 29, 60 to 69, 70 to 79, and 80 plus care recipient age groups were also significant. Mean burden was highest in the 50 to 59 age group (77/120) with depression mean highest in the 30 to 39 age group (14/30). Carers commonly discussed the adverse effects of caregiving on identity, lifestyle, health, and financial situation. Lack of information, poor respite care, and combining work with care were major frustrations. If the government wishes to successfully pursue initiatives allowing people to remain at home, more resources are needed to adequately support carers. [ABSTRACT FROM AUTHOR]

Objectives: The purpose of this research was to compare the current status of assessment and intervention for New Zealand children and adolescents who have autism spectrum disorder (ASD) with recommendations outlined in the 2008 New Zealand ASD Guideline.Methods: ASD coordinators and New Zealand District Health Board (DHB) staff working with children and adolescents who have ASD were electronically surveyed.Results: Responses were received from 32 staff in 17 (85%) surveyed DHBs. Positive findings included the presence of ASD coordinators in 85% of DHBs, clear pathways for management in 73.1% of DHBs and good communications between paediatric, psychiatric and educational teams in some DHBs regions. Areas for improvement included wait times to assessment, access to longer-term support and intervention for families, and training for staff in ASD and cultural issues.Conclusions: Since the launch of the NZ ASD Guidelines, significant progress has been made. However, further work is needed to ensure services for children and adolescents with ASD are accessible, well-coordinated and focussed on both assessment and intervention. [ABSTRACT FROM AUTHOR]

Dementia-related sleep changes can lead to disruptions among families living with dementia which can jeopardise carers' wellbeing and ability to provide support. This research explores and represents the sleep of family caregivers across the trajectory of caring, before, during, and after the key period of their care recipient moving into residential care. The focus of this paper is viewing dementia caregiving as a trajectory, characterised by care needs which change over time. Semi-structured interviews were conducted with 20 carers whose family member with dementia had transitioned into residential care within the prior 2 years. Themes constructed from these interviews indicated that sleep was linked to earlier life course patterns as well as to significant moments of transition in the caregiving journey. As dementia progressed, carers' sleep progressively worsened in relation to the less predictable nature of dementia-symptoms, difficulty maintaining routines, and constant responsibilities creating a state of high alert. Carers attempted to facilitate better sleep and wellbeing for their family member, often sacrificing their own self-care. Around the care transition period, some cares reported not realising how sleep deprived they were; for others the busy momentum continued. After the transition, many carers acknowledged that they were exhausted, although many had not realised this while providing home-based care. Post-transition, many carers reported ongoing sleep disruptions associated with poor sleep habits established whilst caring, insomnia or nightmares and grief. Carers were optimistic that their sleep would improve with time and many were enjoying sleeping according to their own preferences. The sleep experience of family carers is unique and includes tensions between their essential need for sleep and the experience of care as self-sacrifice. Findings have implications for timely support and interventions for families living with dementia. [ABSTRACT FROM AUTHOR]

This mixed-methods study aimed to explore the experiences and goals of Māori parents and whānau (families) caring for young autistic children. Data were collected via a rōpū kōrero (focus group) and an online questionnaire, with a total of 33 parents and whānau participating in at least one phase of the study. Reflexive thematic analysis was used to analyse rōpū kōrero data with findings used to inform the design of an online questionnaire. Questionnaire responses were summarised using descriptive statistics. Results indicate that experience and perceived helpfulness of supports varied across participants. Communication and values-based goals were a high priority for most participants, and most rated cultural goals as important. Findings highlight the value of considering parent and whānau voices, especially those from Indigenous communities. [ABSTRACT FROM AUTHOR]

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This paper synthesises critique from Māori patients with Bipolar Disorder (BD) and their whānau to identify barriers and propose changes to improve the structure and function of the New Zealand mental health system. A qualitative Kaupapa Māori Research methodology was used. Twenty-four semi-structured interviews were completed with Māori patients with BD and members of their whānau. Structural, descriptive and pattern coding was completed using an adapted cultural competence framework to organise and analyse the data. Three key themes identified the impact of structural features of the New Zealand mental health system on health equity for Māori with BD. Themes involved the accessibility, delivery and scope of the current health system, and described how structural features influenced the quality, utility and availability of BD services for Māori patients and whānau. Structural barriers in the existing design, and potential changes to improve the accessibility, delivery and scope of BD services for Māori, were proposed including a redesign of operational, environmental, staffing, and navigation points (information, transition, fatigue) to better meet the needs of Māori with BD. A commitment to equity when implementing structural change is needed, including ongoing evaluation and refinement. This paper provides specific recommendations that should be considered in health service redesign to ensure the New Zealand mental health system meets the needs of Māori patients with BD and their whānau. [ABSTRACT FROM AUTHOR]

Crisis intervention services for people experiencing psychological distress and suicidal ideation are frequently described by the people accessing them as failing to meet their needs. This paper reports a prominent finding from a realist evaluation of Taranaki Retreat—a charitable, non‐clinical organisation in New Zealand, which offers free respite for people experiencing acute distress. Using qualitative methods, the study aimed to move beyond vague notions regarding the helpfulness of respite, to a deeper understanding of the contextual factors and mechanisms which generate outcomes for such an intervention. Participant observation, focus groups with staff, semi‐structured interviews with service users, and analysis of service users' case notes were conducted over a six‐month period in 2018. The most prominent finding from the study related to 'genuine care'—care which is interpreted by the recipient as being motivated by a genuine desire to help. We present this finding as to the central mechanism in a wider programme theory developed through the realist evaluation study. We also present five key features of the care participants were offered at Taranaki Retreat which contributed to their common interpretation regarding the motivations behind this care. Upon considering the centrality of this mechanism we conclude that, in designing crisis interventions, greater consideration should be given to how the intervention can demonstrate genuine care. Having highlighted the ways in which the structure of charitable organisations appears conducive for interpretations of genuine care, we further conclude that the provision of comprehensive crisis intervention by charitable organisations should be further explored and supported. [ABSTRACT FROM AUTHOR]

Objectives: To assess the impact of providing care and conditions of care on psychological wellbeing among older informal caregivers following the initial period of COVID-19 pandemic restrictions in Aotearoa New Zealand. Methods: Data were from population-based cohorts of older adults participating in the 2020 Health, Work and Retirement longitudinal survey (n = 3839, 17.4% informal caregivers). Changes in symptoms of depression and anxiety over 2018–2020 surveys associated with sociodemographic factors, caregiving, cohabitation with the care recipient, assistance provided with activities of daily living, support in providing care, and opportunity cost of care were assessed. Results: Increased depression, but not anxiety, was associated with providing informal care. Among caregivers, lower living standards and cohabitation were associated with increased depression. Lower living standards, unemployment, and lower help from friend/family networks were associated with increased anxiety. Discussion: Economic hardship and social capital provide targets for supporting psychological wellbeing of older caregivers during periods of pandemic restrictions. [ABSTRACT FROM AUTHOR]

Background: Knowledge of the challenges unpaid caregivers faced providing care to older people during the COVID-19 pandemic is limited. Challenges may be especially pronounced for those experiencing inequitable access to health and social care. This participatory action research study, located in New Zealand, has four main objectives, (i) to understand the challenges and rewards associated with caregiving to older care recipients during the COVID-19 pandemic restrictions; (ii) to map and collate resources developed (or mobilised) by organisations during the pandemic; (iii) to co-produce policy recommendations, identify useful caregiver resources and practices, prioritise unmet needs (challenges); and, (iv) to use project results in knowledge translation, in order to improve caregivers access to resources, and raise the profile and recognition of caregivers contribution to society. Methods and analysis: Māori, Pacific and rural-dwelling caregivers to 30 older care-recipients, and 30 representatives from organisations supporting caregivers in New Zealand will be interviewed. Combining data from the interviews and caregivers letters (from an archive of older people's pandemic experiences), framework analysis will be used to examine the interrelated systems of the human ecological model and the impact on caregiving experiences during the pandemic. Resources that service providers had created or used for caregivers and older people will be collated and categorised. Through co-production with caregivers and community partners we will produce three short films describing caregivers' pandemic experiences; identify a suite of resources for caregivers to use in future events requiring self-isolation, and in everyday life; and generate ideas to address unresolved issues. [ABSTRACT FROM AUTHOR]

Stroke can cause lifelong disability and participatory limitations. Stroke survivors thus manage their recovery long term. Health professionals can support self-management, tailoring this support to be culturally appropriate. This study explored the unique culture and ethnicity specific experiences of Indian people living in New Zealand with stroke, focussing on self-management and facilitators and challenges to recovery. Eight individuals with stroke took part in semi-structured interviews. Data were analysed using the General Inductive Approach. Four themes were identified: (1) helping myself, in any way that I can, (2) family and support, (3) social connections, and (4) ethnicity was not a barrier. All participants felt well looked after within the New Zealand healthcare context but highlighted the need for long term support. Self-management strategies participants considered important included changes to their diet, acceptance by oneself and society, returning to work, the role of family, and the use of technology and social media. Health professionals should consider these factors when providing self-management support to individuals of Indian ethnicity. Advice and help around diet, lifestyle, and return to work were important priorities identified by our Indian stroke survivor participants. Our Indian stroke survivor participants requested more long-term specialist support and stroke information. Although the family willingly take increased responsibility for the wellbeing of the individual with stroke, it is not a substitute for professional input which needs to be tailored and offered proactively. [ABSTRACT FROM AUTHOR]

As the largest public health crisis within a century, the COVID‐19 pandemic has caused long‐term disruption in the support systems of people with intellectual and developmental disabilities (IDD) across the globe. The purpose of this study was to investigate challenges and ameliorative strategies to supporting the basic care needs of people with IDD 1 year into the pandemic, as experienced by nurses who specialize in IDD nursing. We surveyed a convenience sample of 369 nurses from across North America, Europe, and Australasia using a 52‐item online questionnaire. Descriptive statistics were used to rank the greatest challenges and the degree of support available to nurses, and manifest content analysis was used to analyze open‐ended responses related to ongoing challenges and ameliorative strategies. Results of descriptive analyses revealed consistent findings across global regions in terms of the challenges faced by nurses; the greatest challenges related to supporting or enabling socialization with family/friends, ensuring adequate day programming or educational services, identifying/planning alternative entertainment activities, ensuring adequate staffing of familiar support workers and caregivers, and managing challenging behaviors related to change in daily routine and activities. Nurses described a considerable degree of support offered by their organizations in terms of flexibility in scheduling related to family obligations and paid time off for COVID‐19‐related isolation and quarantine. Content analysis of open‐ended survey responses revealed numerous challenges related to: (1) client socialization, meaningful activity, and mental/behavioral health; (2) interpreting, keeping up with, and helping others to understand COVID‐19 guidelines; (3) access to, quality of, and continuity of care; and (4) COVID‐19 fatigue and the influence of time. Overall, our study highlights ongoing issues with access to care and support, exacerbated by the pandemic, and the importance of having meaningful activity and socialization for overall well‐being of people with IDD during a long‐term public health crisis. [ABSTRACT FROM AUTHOR]

Objective: To estimate the burden of Alzheimer's disease (AD, including 'mixed' dementia) in New Zealand in 2006, and project this burden out to 2031. Method: An incidence to prevalence methodology was utilized, the foundation of which is a discrete time Markov model allowing for multiple stages of disease (early vs late). Population estimates and projections, and all-cause mortality rates, were obtained from Statistics New Zealand. In the absence of usable New Zealand data, data on disease incidence and progression were obtained from systematic reviews of the international (mainly European, Australian and North American) literature. Projection scenarios included a demographic scenario in which change resulted only from increases in population size and ageing; a prevention scenario in which incidence rates were reduced by 25% from 2011; a treatment scenario in which disease progression rates were likewise reduced by 25% from 2011; and a combined scenario capturing both interventions. Results: The model estimated that approximately 28000 people are currently living with AD (whether formally diagnosed or not), approximately 55% in the early and 45% in the late stage of the disease; approximately 6600 people newly develop AD each year; and approximately 2300 people die from (as opposed to with) this condition. The model projected that the prevalence of AD will increase approximately 2.5-fold (to approx. 70000 people) by 2031, if demographic drivers are unopposed. Plausible improvements in prevention and treatment, however, acting together, could reduce this growth by up to 50%, so that the prevalence of AD only doubles. Conclusion: Even this more optimistic projection has profound implications for the funding and provision of dementia care services, as well as for patients, their families, informal carers and the psychogeriatric workforce. New service configurations and models of care will be necessary. Access, quality and coordination standards for home care, day care, respite care, residential care and specialist services (including memory clinics) will need to respond accordingly. [ABSTRACT FROM AUTHOR]

This paper examines how accounting systems are disseminated in different ways as organisations seek to use accounting information to manage social services across organisational boundaries. Drawing upon qualitative field research within a New Zealand community‐care provider and using the literature on bounded management and accounting visibility, our findings reveal that the government's increasing screening and monitoring of social support services create an extra burden on carers and families. We reflect on how internal accounting practices only capture the visible costs endured by government‐funded programmes, ignoring a significant part of disability care costs incurred by family members and other carers. [ABSTRACT FROM AUTHOR]

Background: People who smoke with serious mental illness carry disproportionate costs from smoking, including poor health and premature death from tobacco-related illnesses. Hospitals in New Zealand are ostensibly smoke-free; however, some mental health wards have resisted implementing this policy. Aim: This study explored smoking in acute metal health wards using data emerging from a large sociological study on modern acute psychiatric units. Methods: Eighty-five in-depth, semi-structured interviews were conducted with staff and service users from four units. Data were analysed using a social constructionist problem representation approach. Results: Although high-level smoke-free policies were mandatory, most participants disregarded these policies and smoking occurred in internal courtyards. Staff reasoned that acute admissions were not the time to quit smoking, citing the sceptres of distress and possibly violence; further, they found smoking challenging to combat. Inconsistent enforcement of smoke-free policies was common and problematic. Many service users also rejected smoke-free policies; they considered smoking facilitated social connections, alleviated boredom, and helped them feel calm in a distressing environment – some started or increased smoking following admission. A minority viewed smoking as a problem; a fire hazard, or pollutant. No one mentioned its health risks. Conclusion: Psychiatric wards remain overlooked corners where hospital smoke-free policies are inconsistently applied or ignored. Well-meaning staff hold strong but anachronistic views about smoking. To neglect smoking cessation support for people with serious mental illness is discriminatory and perpetuates health and socioeconomic inequities. However, blanket applications of generic policy are unlikely to succeed. Solutions may include myth-busting education for service users and staff, local champions, and strong managerial support and leadership, with additional resourcing during transition phases. Smoke-free policies need consistent application with non-judgemental NRT and, potentially, other treatments. Smoking cessation would be supported by better designed facilities with more options for alleviating boredom, expressing autonomy, facilitating social connections, and reducing distress. [ABSTRACT FROM AUTHOR]

The goal of this position paper on ventilatory support at home for children is to provide expert consensus from Australia and New Zealand on optimal care for children requiring ventilatory support at home, both non-invasive and invasive. It was compiled by members of the Thoracic Society of Australia and New Zealand (TSANZ) and the Australasian Sleep Association (ASA). This document provides recommendations to support the development of improved services for Australian and New Zealand children who require long-term ventilatory support. Issues relevant to providers of equipment and areas of research need are highlighted. [ABSTRACT FROM AUTHOR]

Cultural groups may vary considerably in their understandings of autism spectrum disorder and approaches to supporting autistic individuals. However, approaches to researching, identifying and managing autism are largely dominated by Western perspectives. This review provides an overview of the literature related to autism and Māori, the indigenous people of Aotearoa/New Zealand. A search of the peer-reviewed and grey literature identified 273 potentially relevant publications, and 13 of these met inclusion criteria. The included publications addressed questions related to Māori understandings of autism, Māori prevalence rates and diagnostic and support services for Māori. Findings suggest broad differences in Māori and Western understandings of autism and slightly higher autism prevalence rates for Māori than for non-Māori New Zealanders. The need for diagnostic and support services that are both effective and culturally appropriate for Māori was also highlighted. These findings are discussed in relation to implications for future research and the provision of services for autistic Māori. Most current approaches to identifying, researching and managing autism are based on Western views and understandings. However, different cultural groups may understand and approach autism differently. We searched a wide range of websites, academic journals and other sources for published information related to autism and Māori, the indigenous people of Aotearoa/New Zealand. Our search identified 13 publications that addressed questions related to Māori understandings of autism, Māori prevalence rates and diagnostic and support services for Māori. Overall, we found broad differences in Māori and Western understandings of autism and slightly higher autism prevalence rates for Māori than for non-Māori New Zealanders. Findings also highlighted a need for diagnostic and support services that are both effective and culturally appropriate for Māori. We discuss what these findings might mean for future research and the provision of services for Māori with autism. [ABSTRACT FROM AUTHOR]

Maternal substance use (SUD) and mental health disorders commonly co-occur and require complex treatment. Information on women's use of appropriate services in the perinatal period is limited. Data from the New Zealand Infant Development, Environment and Lifestyle Study were used to examine the characteristics of women with high probability of substance use and/or psychiatric disorder and rates of service use at 1 and 12 months following birth (n = 221). The Substance Abuse Subtle Screening Inventory-3 and the Brief Symptom Inventory were used to identify risk of disorder. Despite a high proportion of mothers with disorder risk, rates of specialist treatment remained low across SUD and psychiatric groups at 1 (27–39%) and 12 months postnatal (25–42%). Very low rates of women with comorbid disorder received both mental health and substance use treatments (1 month, 4.5%; 12 months, 7.3%). There was no association between service use and risk for psychiatric disorder at 12 months after birth. The findings suggest that even when services are publicly funded, they may be under-utilised or under-resourced to provide effective treatment, despite the high and complex needs of this population. [ABSTRACT FROM AUTHOR]

The objective of this study was to investigate if "Mixed Presenters," people who present to emergency departments at least twice within 28 days, once for self-harm and once for another reason (any order), have an increased risk of subsequent serious self-harm compared to self-harm only repeat presenters. Self-harm coded emergency department data from the Multi-level Intervention for Suicide Prevention (MISP) study was utilized to identify people with at least two presentations to one of eight District Health Boards between 2010 and 2012. First eligible presentation pairs determined their "Mixed Presenter" or "Self-harm Only Presenter" status. The sample was linked to admission and mortality datasets. Survival analysis over the 30-month timeframe was used to determine which presenter group was at higher risk of serious self-harm. Mixed Presenters (n = 1,544), four times more common than Self-harm Only Presenters (n = 377), had an estimated 60% reduced risk of serious self-harm compared to Self-harm Only Presenters. Compared to men, women had a 3.5 times (HR 3.53, 95% CI 2.47–5.06) increased risk. Having an urgent triage code allocated at the index presentation and being admitted at that index presentation were associated with increased serious self-harm risk for Self-harm Only Presenters compared to Mixed Presenters. This study confirms that two presentations for self-harm within a short timeframe indicate high risk of serious self-harm in the future. As men often die following single attempts, and Mixed Presenters may transition to being Self-harm Only Presenters, each presentation for self-harm requires serious attention. [ABSTRACT FROM AUTHOR]

Background: Measuring person-centred outcomes and using this information to improve service delivery is a challenge for many care providers. We aimed to identify predictors of QoL among older adults receiving community-based aged care services and examine variation across different community care service outlets.Methods: A retrospective sample of 1141 Australians aged ≥60 years receiving community-based care services from a large service provider within 19 service outlets. Clients' QoL was captured using the ICEpop CAPability Index. QoL scores and predictors of QoL (i.e. sociodemographic, social participation and service use) were extracted from clients' electronic records and examined using multivariable regression. Funnel plots were used to examine variation in risk-adjusted QoL scores across service outlets.Results: Mean age was 81.5 years (SD = 8) and 75.5% were women. Clients had a mean QoL score of 0.81 (range 0-1, SD = 0.15). After accounting for other factors, being older (p < 0.01), having lower-level care needs (p < 0.01), receiving services which met needs for assistance with activities of daily living (p < 0.01), and having higher levels of social participation (p < 0.001) were associated with higher QoL scores. Of the 19 service outlets, 21% (n = 4) had lower mean risk-adjusted QoL scores than expected (< 95% control limits) and 16% (n = 3) had higher mean scores than expected.Conclusion: Using QoL as an indicator to compare care quality may be feasible, with appropriate risk adjustment. Implementing QoL tools allows providers to measure and monitor their performance and service outcomes, as well as identify clients with poor quality of life who may need extra support.Trial Registration: Australian and New Zealand clinical trial registry number: ACTRN12617001212347 . Registered 18/08/2017. [ABSTRACT FROM AUTHOR]

Background: Sleep disturbances are challenging symptoms associated with mild cognitive impairment or dementia (MCIoD). This study assessed the feasibility of sleep monitoring and non-pharmacological interventions to improve the sleep of New Zealanders with MCIoD and their family carers. Methods: A 5-week multi-modal intervention consisting of timed bright light therapy, physical activity, and sleep education was piloted. Sleep was monitored for a week at baseline and conclusion of the trial using actigraphy, diaries, and questionnaires alongside additional health and wellbeing information concerning both care recipients and carers. Results: Fifteen pairs participated, 9 completed the trial. Patterns of attrition and participant feedback are discussed. Case studies showed that six of the care recipients had minor improvements to sleep efficiency. Some also had improved subjective sleep ratings and quality of life. Changes did not clearly translate to family carers. However, five of them also showed some improvements in sleep status and mental health. Health deterioration of care recipients may mask the effects of the intervention. Conclusions: It is feasible to use non-pharmacological sleep interventions for people with MCIoD and their family carers. Given the limited treatment options, further consideration of such interventions in future research and clinical practice is warranted. Trial registration: As this study was to assess the feasibility of proposed methods, it was an observational study without case-control groups nor a medical-based intervention, clinical registration was not required. A future full version of the trial would be registered with the Australian New Zealand Clinical Trails Registry. [ABSTRACT FROM AUTHOR]

Disabled people and their whänau have poorer outcomes across a wide range of wellbeing and living standards measures.1 Yet disability analysis does not appear to be well integrated into government decision making on wellbeing. This article builds a framework for understanding disability in a wellbeing context by using the Treasury's Living Standards Framework and Sophie Mitra's human development model for disability and health. One of the most important aspects of Mitra's model is the interaction between resources and structural factors. Structural factors, such as an inaccessible built environment, force disabled people to spend more resources to get the same outcomes as nondisabled people. Publicly funded disability support is essential to counteract these structural factors. We also need to improve the usability of the four capitals for disabled people and their whänau to reduce these structural barriers. [ABSTRACT FROM AUTHOR]

INTRODUCTION: Malnutrition is an under-recognised and under-treated problem often affecting older adults. AIM: The aim of this study was to evaluate the prevalence of and factors associated with malnutrition and frailty among older adults at early admission to residential aged care. METHODS: A cross-sectional study was undertaken among eligible older adults within the first week of admission to residential aged care. Participants were assessed for malnutrition risk using the Mini Nutritional Assessment Short Form, frailty using the Fried phenotype criterion, muscle strength using a grip strength dynamometer and gait speed using a 2.4-m walk test. A Cox regression analysis was conducted to identify factors associated with malnutrition risk and frailty status. RESULTS: Of 174 participants (mean age 85.5 years, 61% women), two-thirds (66%) were admitted to residential aged care from the community. Most (93%) were either malnourished (48%) or at risk of malnutrition (45%). A total of 76% of participants were frail and 24% were pre-frail. Forty-three percent were both malnourished and frail. Low risk of malnutrition was associated with increases in muscle strength [0.96 (0.93–0.99)], gait speed [0.27 (0.10–0.73)] and pre-frailty status [0.32 (0.12–0.83)]. DISCUSSION: This study provides preliminary evidence for high prevalence of malnutrition and frailty at admission to residential aged care. Almost all participants were malnourished or at nutrition risk. Findings highlight the need for strategies to prevent, detect and treat malnutrition in community health care and support nutrition screening at admission to residential aged care. [ABSTRACT FROM AUTHOR]

This study reviews the demographic characteristics of Asian children diagnosed with autism spectrum disorder (ASD) in Auckland, New Zealand, the support services they can access, and how more equitable access to health services can be provided. We examined government and non-government support services for Asian children diagnosed with ASD and their families. The findings reflect the complexities of navigating and accessing health, disability, education and social support services. Analysis of Ministry of Health Disability Support Services (DSSs) data suggest that Asians in New Zealand are underrepresented in utilizing DSSs. Drawing on Andersen's health care utilization model, suggestions for more equitable access to health, disability, education and social support include culturally and linguistically appropriate health care and social policies. [ABSTRACT FROM AUTHOR]

Introduction: The fatal toxicity index (FTI) is a measure for assessing the relative risks of death due to the medicines prescribed in a population. This knowledge is useful for prescribers and informs medicine safety initiatives. This study aimed to calculate FTIs for the New Zealand population using three methodologies. Methods: New Zealand coronial data describing medicine-related deaths from 1 January 2008 to 31 December 2013 were retrospectively extracted from the National Coronial Information System. Three fatal toxicity indices were derived using the number of deaths attributed to each pharmaceutical as the numerator and the total defined daily doses, number of patients and number of prescriptions as denominators. Results: There were 703 medicine-related deaths, of which 627 were assessed as due to one primary contributor. Median decedent age was 48 years (interquartile range 37–58), and 319 (51%) were male. Deaths were intentional in 252 cases (40%), unintentional in 284 (45%) and unknown in 91 (15%). The majority of deaths (n = 486, 78%) occurred in the community. Opioids, antidepressants, antipsychotics and hypnotic-anxiolytics caused most fatalities. While the FTIs for individual medicines varied by denominator applied, methadone and clozapine fatalities were prominent in all three indices. The antidepressants clomipramine, dosulepin and doxepin consistently returned the highest FTIs in their group. Conclusion: New Zealand prescribers should be aware of the high relative risk of death associated with methadone and clozapine; that clomipramine, dosulepin and doxepin were identified as the most dangerous antidepressants; and that zopiclone carries a similar fatal risk to benzodiazepines. Varying results were found between the FTIs calculated, making comparisons, particularly between populations, difficult. [ABSTRACT FROM AUTHOR]

Background: Older people living in the community have a high prevalence of polypharmacy and are vulnerable to adverse drug events. Home Medicines Review (HMR) is a collaborative medication review service involving general practitioners (GPs), accredited clinical pharmacists (ACPs) and patients, which aims to prevent medication-related problems. This study aims to evaluate the implementation of a Computerised Clinical Decision Support System (CCDSS) called G-MEDSS© (Goal-directed Medication Review Electronic Decision Support System) in HMRs to deprescribe anticholinergic and sedative medications, and to assess the effect of deprescribing on clinical outcomes.Methods: This study consists of 2 stages: Stage I - a two-arm parallel-group cluster-randomised clinical trial, and Stage II - process evaluation of the CCDSS intervention in HMR. Community-dwelling older adults living with and without dementia who are referred for HMR by their GP and recruited by ACPs will be included in this study. G-MEDSS is a CCDSS designed to provide clinical decision support for healthcare practitioners when completing a medication review, to tailor care to meet the patients' goals and preferences. The G-MEDSS contains three tools: The Goals of Care Management Tool, The Drug Burden Index (DBI) Calculator©, and The revised Patients' Attitudes Towards Deprescribing (rPATD) questionnaire. The G-MEDSS produces patient-specific deprescribing reports, to be included as part of the ACPs communication with the patient's GP, and patient-specific reports for the patient (or carer). ACPs randomised to the intervention arm of the study will use G-MEDSS to create deprescribing reports for the referring GP and for their patient (or carer) when submitting the HMR report. ACPs in the comparison arm will provide the usual care HMR service (without the G-MEDSS).Outcomes: The primary outcome is reduction in DBI exposure 3 months after HMR ± G-MEDSS intervention between comparison and intervention groups. The secondary outcomes include changes in clinical outcomes (physical and cognitive function, falls, institutionalisation, GP visits, medication adherence and mortality) 3-months after HMR.Discussion: This study is expected to add to the evidence that the combination of CCDSS supporting medication review can improve prescribing and clinical outcomes in older adults.Trial Registration: The trial was registered on the Australian New Zealand Clinical Trials Registry ACTRN12617000895381 on 19th June 2017. [ABSTRACT FROM AUTHOR]

Introduction: While a number of developed countries have witnessed a decline in carbon monoxide (CO) deaths and increasing numbers of opioid-related fatalities, it is not known whether these or other trends have occurred in New Zealand. The aim of this study was, therefore, to review deaths due to poisoning in New Zealand, describe the causative substances, and identify any trends. Methods: Retrospective study reviewing New Zealand's poison-related death findings recorded in the National Coronial Information System (NCIS) database over the 6-year period 2008–2013. Results: We identified 1402 poisoning-related deaths recorded in the NCIS database representing a mortality rate of 5.4 deaths/100,000 population per year. The mortality rate due to poisoning was higher in males (6.96/100,000) than females (3.83/100,000). Fatalities peaked in the 40–50-year age group with the highest proportion of intentional deaths occurring in people aged 80–90 years. Pharmaceuticals accounted for 731 fatalities (52%) and chemicals 431 (31%), with multiple exposures occurring in 399 cases (28.5%). While CO was the leading cause of death throughout the period (n = 303, 21.6%), there was a significant reduction in the rate of CO fatalities from 1.69/100,000 population in 2008 to 0.94/100,000 in 2013 (IRR (95% CI) 2013/2008 0.56 (0.37–0.83)). There was, however, no statistically significant change in either the opioid-related death rate or the total number of deaths. Methadone was the leading pharmaceutical cause of fatality and the third most common cause overall, followed by morphine and codeine, with zopiclone and clozapine equally ranked as the sixth most common cause. Conclusion: While New Zealand has not suffered an "opioid epidemic" and has experienced a significant decline in CO deaths, the overall death rate due to poisoning has remained high. The development of accessible, timely, and relevant toxicovigilance systems would support the early implementation of interventions to reduce the leading causes of fatal poisoning. [ABSTRACT FROM AUTHOR]

Background: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems. Aim: The aim is o identify and compare sources of financial support for family caregivers of people approaching the end of life, across six countries with similarly performing health care systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States). Design: A survey of financial support, welfare and benefits for end of life family caregivers was completed by 99 palliative care experts from the six countries. Grey literature searches and academic database searches were also conducted. Comparative analyses of all data sources documented financial support within and between each country. Results: Some form of financial support for family caregivers is available in all six countries; however the type, extent and reach of support vary. Financial support is administered by multiple agencies, eligibility criteria for receiving support are numerous and complex, and there is considerable inequity in the provision of support. Conclusion: Numerous barriers exist to the receipt of financial support, welfare and benefits. We identified several areas of concern, including a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Nonetheless, there is significant potential for policymakers to learn from other countries' experiences, particularly with regard to the scope and operationalisation of financial support. [ABSTRACT FROM AUTHOR]

Abstract This paper addresses a hitherto unexamined phenomenon in the geography of health promotion: the use of postage stamps. We 'read' health stamps as featuring imagery and exhortations that reflect temporally-specific understandings of children's health and wellbeing. As a case study, we examine examples of the stamps sold annually since 1929 as a fund-raiser for New Zealand Children's Health Camps Foundation. This government-supported voluntary sector agency sought to offer respite for children from unhealthy environments and enhance their wellbeing through offering opportunities in semi-rural locations focusing on nutrition and exercise. Recently, emphasis changed to concern with behavioural issues such as self-esteem. The annual stamp appeal continued until 2016 with nuanced themes (e.g., birds and butterflies, invoking associated ideas of children as vulnerable yet precious and needing protection). Our goal is two-fold: first, we seek to theorise the role of the postage stamp in mobilising health-promoting messages; and, second, we examine changing imaginaries associated with child health included in this annual series of stamps. Drawing on assemblage theory, we read the act of purchasing children's health stamps as offering a tacit seal of approval for child health. Through assembling resources, personnel and ideas about health, they reflected and reproduced the nation state and its goals for children's health while also crossing national boundaries. Highlights • We argue that stamps can reflect health-related aspirations of the nation state. • We read health stamps as part of assemblages of people, resources and ideas. • We analyse New Zealand health stamps noting changing constructions of child health. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this paper is to outline the development of an evidence-based training and support course for caregivers of children with foetal alcohol spectrum disorder (FASD) in New Zealand, and a brief evaluation undertaken. The seven-week caregiver training course takes an empowerment and advocacy orientation, and the aim is to assist caregivers who are caring for children with, or suspected to have FASD, develop greater resilience and strategies to help their families live successfully with impairments in a disabling society.Design/methodology/approach A total of 13 parents and caregivers received a seven times two-hour weekly group programme of talks, exercises and case study discussions focused on the following objectives: an increased knowledge of FASD; an increased knowledge of successful strategies and interventions that can be used to help families; and having an opportunity to foster strong peer-support relationships with others who share the lived experience of FASD. A brief interview-based evaluation was undertaken to ascertain caregivers' views of the course, its benefits and limitations.Findings Caregivers valued both the content and process of the training course. They highlighted that strength of the training was the delivery by experienced, professionally trained caregivers of children with FASD. They valued the opportunity to spend time with peers in similar circumstances who understood the challenges of parenting a child with FASD.Originality/value A short evidence-based specialist training course for parents and caregivers with an empowerment and peer-support orientation is beneficial to parenting children with FASD. [ABSTRACT FROM AUTHOR]

Aims and objectives: To explore an innovative primary healthcare gerontology nurse specialist role from the perspectives of older people and health professionals. Background: Primary care is struggling to meet the needs and demands of complex older people. New models which incorporate holistic assessment and care coordination are necessary. Design: A qualitative descriptive general inductive design was used. Methods: Older people at risk of health and functional decline were identified and received a comprehensive gerontology assessment and care coordination. Older adults (75 years+) enrolled within one of three primary healthcare practices in Auckland, New Zealand were eligible. Healthcare professionals directly involved with the primary healthcare gerontology nurse specialist model were invited for study participation. Face-to-face interviews were held with five older people and six health professionals were interviewed by telephone. A semistructured interview guide was used for all interviews. A general inductive approach was undertaken for analysis to systematically identify codes and themes. Results: Data analysis revealed two central themes from the older people perspective: “holistic expertise” and “communication.” Two main themes were identified from the health professional perspective: “competency” and “service delivery.” Results showed the gerontology nurse specialist role was highly regarded by both older people and the health professionals. The in-home comprehensive geriatric assessment was identified as greatly beneficial. Conclusions: The competence and care coordination of the gerontology nurse specialist reduced fragmentation and were deemed immensely valuable. Care coordination should be recognised as a key component to meeting the complex needs of at risk older people in the community. Relevance to clinical practice: The expert knowledge of the gerontology nurse specialist and in-home comprehensive geriatric assessment were crucial aspects of the new model. Equally important was the assimilation of primary and secondary care infrastructure to upskill and deliver mentorship to the gerontology nurse specialist. [ABSTRACT FROM AUTHOR]

Government and philanthropic funders are key charity stakeholders, yet we know little about their accountability information needs. This New Zealand study captures these stakeholders’ perceptions of the background, financial and non-financial performance information they need from charities. It also reveals how, in addition to imposing reporting requirements, these key funders engage in ‘institutional work’ to ensure they receive appropriate accountability information. [ABSTRACT FROM AUTHOR]