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Autism is associated with a range of costs. This paper reviews the literature on estimating the economic costs of autism spectrum disorder (ASD). More or less 50 papers covering multiple countries (US, UK, Australia, Canada, Sweden, the Netherlands, etc.) were analysed. Six types of costs are discussed in depth: (i) medical and healthcare service costs, (ii) therapeutic costs, (iii) (special) education costs, (iv) costs of production loss for adults with ASD, (v) costs of informal care and lost productivity for family/caregivers, and (vi) costs of accommodation, respite care, and out-of-pocket expenses. A general finding is that individuals with ASD and families with children with ASD have higher costs. Education costs appear to be a major cost component for parents with children with ASD.

Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability. Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses. Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation. Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population.

This study assessed factors that could influence equipment and respite services use among Australian families caring for a girl/woman with Rett syndrome and examined relationships between use of these resources and the health of female caregivers. Data was sourced from questionnaires completed by families (n=170) contributing to the Australian Rett Syndrome Database in 2004 and 2006. Regression analysis was used to assess relationships between child factors (age, mobility, clinical severity and behaviour), family factors (accessibility and socio-economic factors) and the use of equipment and respite services in 2004, and relationships between resource use in 2004 and health of female caregivers as measured by the SF-12 in 2006. In 2004, the majority (88.3%) of families used at least one piece of equipment with more equipment use associated with greater mobility restrictions. Home respite services were used by 54.9% of families and overnight respite services by 47.6% of families. Use of more home respite services was associated with severely restricted levels of mobility and mothers having a vocational or university qualification. Use of more overnight respite services was associated with increasing age of the girl/woman with Rett syndrome and mothers being employed while use of less overnight respite services was associated with increasingly difficult behaviours in the girl/woman. In 2006, female caregivers had a mean mental health score of 41.1 (95% CI 38.9-43.3) and no relationships with previous resource use were identified. The mean physical health score of female caregivers was 48.7 (95% CI 46.8-50.5) and lower scores were associated with the use of equipment and overnight respite services. Equipment was a widely used resource whereas respite services, particularly overnight services, were used less widely. Further investigation of the reasons for this and alternative support strategies is indicated. (Contains 6 tables.)

Informal carers of an adult with mental illness have asked that respite care be an integral component of mental health service provision. The present study involved a pilot investigation of the effectiveness of accessing respite care for carers of individuals with a mental illness. It was hypothesised that compared to carers who have not accessed respite care, carers who access respite care would report lower burden and distress, higher life satisfaction and better health after their use of respite care. The study used a respite care group and comparison group of respite care non-users with a pre- and post-respite assessment, and 3-month follow-up design. Participants were 20 carers recruited through carer organisations; 10 carers who accessed respite and 10 carers who had never accessed respite. As expected, the respite care group reported a decrease in burden, but unexpectedly also reported an increase in stress, whereas the comparison group did not change over time. Further research is needed to explore the potential benefits and possible risks associated with different types of respite care using large samples within randomised controlled trials in order to inform respite care policy and service planning. (Contains 2 tables.)

Background: As part of an international, multicentre project, the service and support needs of Australian family carers were investigated. Method: A sample of 1,390, 448 family carers completed a self-report survey, including an adaptation of the Family Needs Survey (FNS) and several open-ended questions. A mixed method design was used, employing quantitative and qualitative analyses. Results: On the FNS the most frequently endorsed items were those relating to the need for information about services and, in particular, future, out-of-home accommodation. Similarly, the need for respite services was endorsed by over 80% of respondents. Comments indicated that access to and the quality of respite, day support, and therapy programs were a priority. Conclusions: Participants expressed the need for greater access to information. Access to appropriate respite options, together with quality day support and therapy services, remain a priority for family carers. (Contains 3 tables.)

Respite is one of the critical support systems for families and carers who support and care for a person with a life-long disability. This study examined the profile of respite services in the Australian state of New South Wales and explored respite providers' views of the factors influencing respite use, and their expectations of respite services, including delivery. Data were analysed from a 107-item survey completed by 90 respite service providers who were members of the peak respite service association in New South Wales. A comprehensive profile of respite service providers is presented. A variety of respite services was provided to persons with different disability types in all age ranges and across geographical regions. The views of respite providers on factors influencing respite use and expectations of respite appear consistent with the research evidence on factors influencing some carers. There is a strong argument for respite service funding to be flexible, responsive to the needs of carers and to be consumer-driven. Appropriate staff training remains an important issue. The findings suggest that many respite providers have significant experience in running a respite service. There is scope for respite providers to consider support for carers. The development of a tool to determine predictors of respite use and non-use may be beneficial for resource allocation and planning. (Contains 3 tables.)

'Rethink Respite' was a prospective, naturalistic cohort study conducted in the Illawarra‐Shoalhaven (NSW, Australia) to improve knowledge, attitudes and uptake of respite strategies in carers of people with dementia. A convenience sample of n = 70 carers were recruited in 2014–15 to establish a baseline for knowledge, attitudes and use of respite for a cohort of carers in the region. Carer perceived need for respite, burden and self‐efficacy were also assessed. A co‐designed multi‐component community‐based intervention was subsequently rolled at in the region from 2015 to 2016. The intervention supported: awareness raising media; carer education sessions; access to web and print respite information resources; and an option to participate in a tailored one‐on‐one in‐home coaching program. At program completion, a follow‐up survey was administered to the cohort, with n = 44/70 responding. All n = 44 respondents reported participation in and exposure to 'Rethink Respite' media, information and education during the intervention period. Eighteen of the 44 also self‐selected to receive the active tailored coaching support. At follow‐up, few positive results were reported on the assessed carer variables for the cohort over time. However, post hoc sub‐group analyses found those who also self‐selected to receive active support (provided through coaching) (n = 18), showed improvements to their respite knowledge, attitudes and self‐efficacy (p <.05). Intention to use respite, and levels of personal gain from caring in this sub‐group also increased (p <.05). In contrast, carers who only participated in the informational/educational aspects of the program (and did not self‐select to the respite coaching), experienced negative changes over time to their respite beliefs and 'role captivity'. Overall, this pilot study suggests that passive respite information and educational strategies are insufficient, without more active supports (tailored respite coaching) to address observed carer decline over time. Future research should seek to replicate these results using a larger sample and an experimental design. [ABSTRACT FROM AUTHOR]

Primary carers play an important role in supporting the Australian Government's policy of 'ageing in place' or encouraging people to receive care in their own homes or communities rather than in institutions. Supporting carers in their role is therefore an important aspect of the policy's success. Despite numerous programs in place, this study finds that among carers of older Australians, a relatively high proportion (39%) cite unmet needs in their carer role, including a need for financial support, physical assistance, emotional support, improvement in carer health and more respite care. Concerningly, unmet support needs were shown to be strongly associated with markers of poor carer well-being, including an almost 2-fold increase in odds of poor carer satisfaction (odds ratio (OR) 1.77, 95% confidence interval (CI) 1.24-2.51), a 4- to 5-fold increase in the odds of changes to physical and emotional well-being (OR 5.29, 95% CI 3.83-7.31), deterioration in financial situation (OR 4.60, 95% CI 3.26-6.48) and strained carer-recipient relationship (OR 3.79, 95% CI 2.39-6.01). [ABSTRACT FROM AUTHOR]

Objective: To examine the one‐year mortality of Australians entering aged care services compared with the general population. Methods: A population‐based analysis evaluating one‐year mortality among people who received first ever aged care services in 2013 compared with the general population was conducted. Results: In 2013, 3.3 million Australians were ≥ 65 years and 34 919 (1%) entered permanent residential care, 23 288 (0.7%) respite care, 20 265 (0.6%) commenced home care packages, and 15 387 (0.5%) transition care. Individuals receiving aged care services had higher mortality than the general population, with those entering permanent residential care (age and sex direct standardised mortality rate ratio = 10.1, 95% CI: 9.8‐10.5) having the greatest difference, followed by people accessing respite (7.2, 95% CI: 6.9‐7.6), transition (4.6, 95% CI: 4.4‐4.9) and home care (4.1, 95% CI: 3.9‐4.4). Significant variation by sex and age was observed. Conclusion: Our study has identified significant variations in mortality rates that highlight which cohorts entering aged care are the most vulnerable. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the access of approved aged care services and factors associated with accessing these services. Methods: A retrospective cohort study was conducted (1/7/2003‐30/6/2013). The incidence of accessing permanent residential, home and respite care services within one year or transition care within 28 days of approval was evaluated. The association of participants' socio‐demographic characteristics, limitations, health conditions and assessment characteristics with service use was evaluated. Results: In 799 750 older Australians, the incidence of accessing approved permanent residential care within one year was 70.9% (95% confidence interval [CI] 70.8%‐71.0%), home care 49.5% (95% CI 49.3%‐49.7%) and respite 41.8% (95% CI 41.7%‐41.9%). The incidence of accessing transition care at 28 days was 78.5% (95% CI 78.2%‐78.7%). Aged care seekers', assessments' and assessors' characteristics are associated with service access. Conclusion: Monitoring the use of aged care service approvals is necessary for the identification of service access barriers to support evidence‐based policy changes. [ABSTRACT FROM AUTHOR]

The majority of people living with dementia reside in the community and are often reliant on the support of informal carers to do so. Family carers face many challenges in supporting the person with dementia to remain at home, and short‐term respite care is a valued service that offers a temporary break from the role. Respite cottages provide short‐term care in a residential home‐like setting with a limited number of clients and is a more flexible approach to accessing the service. Disproportionate use of cottage respite in Australia suggests this model is preferred over traditional respite within residential aged care facility (RACF) settings, yet limited research exists to compare these models. This study sought to understand the perceptions of carers who had used cottage respite in comparison to other models, and explore the contribution of cottage respite for supporting carers to continue in their role and maintain their care recipient (CR) living at home. Semi‐structured interviews were conducted with 126 family carers who had used one of two New South Wales‐based respite cottages within a 2‐year period; 67 of whom had also used RACF respite. Thematic analysis revealed four main themes around the benefits of cottage respite: (a) an effective essential service, (b) flexibility, (c) familiarity and (d) appropriateness, especially for early stage or younger onset dementia. Carers indicated that the more homely, familiar and intimate cottage model of respite care was preferential to that of the larger, institutional‐style RACF respite setting. Carers credited the cottage model of respite service with delaying their need for permanent residential placement by over 12 months. The cottage respite model provides an important avenue to supporting the individual needs of dementia dyads, with potential to delay permanent placement, and should be offered more broadly to provide people with more choice about their care. [ABSTRACT FROM AUTHOR]

Background: Residential respite is an important support for many community‐dwelling older Australians and their caregivers. Respite clients are often very frail with high or specific care needs. Little is known about the comparative outcomes of hospital admission between permanent residential aged care facility (RACF) residents and residential respite residents. Aim: To determine the number of residential respite clients admitted to an acute tertiary hospital, and compare characteristics and in‐hospital outcomes with those of permanent residential care residents. Methods: Retrospective study of residential respite patients admitted to an Australian tertiary hospital between November 2014 and September 2017. Comparison groups: all RACF patients admitted during same period (general RACF group), and control group matched (2:1) for aged, gender and diagnosis. Main outcome measures: in‐hospital mortality, hospital length of stay (LOS), in‐hospital complications (including fall, delirium, pressure injury, Medical Emergency Team (MET) call). Comparisons adjusted for age, gender, presenting symptom and matching variable. Results: A total of 166 admissions from residential respite and 332 matched RACF controls identified from 4575 admissions for permanent RACF residents. Mortality was significantly higher in respite group versus general RACF group (15.1 vs 8.2%, P < 0.001) but not matched control group (15.1 vs 16.3%, P = 0.795). LOS was significantly higher in respite patients than either control group. Respite patients had significantly higher prevalence of in‐hospital fall (10.8 vs 1.5%, P < 0.0001) and delirium (35.5 vs 17.7%, P < 0.001) than matched RACF controls. No significant differences were seen in in MET‐call and pressure injury rates. Conclusion: Although residential respite recipients represent a minority of total residential aged care admissions, they are at high risk of poor outcomes. Prospective identification and timely intervention may improve quality of care for this vulnerable cohort. [ABSTRACT FROM AUTHOR]

Aims: Planning mental health carer services requires information about the number of carers, their characteristics, service use and unmet support needs. Available Australian estimates vary widely due to different definitions of mental illness and the types of carers included. This study aimed to provide a detailed profile of Australian mental health carers using a nationally representative household survey. Methods: The number of mental health carers, characteristics of carers and their care recipients, caring hours and tasks provided, service use and unmet service needs were derived from the national 2012 Survey of Disability, Ageing and Carers. Co-resident carers of adults with a mental illness were compared with those caring for people with physical health and other cognitive/behavioural conditions (e.g., autism, intellectual disability, dementia) on measures of service use, service needs and aspects of their caring role. Results: In 2012, there were 225 421 co-resident carers of adults with mental illness in Australia, representing 1.0% of the population, and an estimated further 103 813 mental health carers not living with their care recipient. The majority of co-resident carers supported one person with mental illness, usually their partner or adult child. Mental health carers were more likely than physical health carers to provide emotional support (68.1% v. 19.7% of carers) and less likely to assist with practical tasks (64.1% v. 86.6%) and activities of daily living (31.9% v. 48.9%). Of co-resident mental health carers, 22.5% or 50 828 people were confirmed primary carers – the person providing the most support to their care recipient. Many primary mental health carers (37.8%) provided more than 40 h of care per week. Only 23.8% of primary mental health carers received government income support for carers and only 34.4% received formal service assistance in their caring role, while 49.0% wanted more support. Significantly more primary mental health than primary physical health carers were dissatisfied with received services (20.0% v. 3.2%), and 35.0% did not know what services were available to them. Conclusions: Results reveal a sizable number of mental health carers with unmet needs in the Australian community, particularly with respect to financial assistance and respite care, and that these carers are poorly informed about available supports. The prominence of emotional support and their greater dissatisfaction with services indicate a need to better tailor carer services. If implemented carefully, recent Australian reforms including the Carer Gateway and National Disability Insurance Scheme hold promise for improving mental health carer supports. [ABSTRACT FROM AUTHOR]

Background: Research highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services. Unfortunately, negative experiences of information-seeking can create additional stress for carers and contribute to delays in up-take, or not using respite services at all.Methods: Cross-sectional survey data was collected from a convenience sample of n = 84 carers of older people with dementia living in the Illawarra-Shoalhaven region of NSW, Australia. We assessed knowledge, attitudes, information seeking behaviours, and unmet need for respite services in 2016, following national aged care reforms.Results: Over the previous 12 months, 86% of carers sought respite service information. The majority (73%) of all carers reported an unmet need for respite services, and were relying on personal networks to provide support for respite information. Few utilised the new government gateway 'My Aged Care' phone line (11%) or website (25%). However, 35% used a pre-existing helpline to access short term or emergency respite. We found a preference for interpersonal information sources, including local doctor (65%), professionally and volunteer led carer support groups (49%), and family and friends (46%). Those using four or more information sources showed higher capacity to name local respite services. Respite service information seekers were more likely to be caring for someone with behavioural problems, to have received assistance to access services, and to have used respite services in the past 3 to 6 months.Conclusions: New reforms in the Australian aged care sector have not adequately responded to the needs of carers of people with dementia for respite service information and support. Wider, community-based messaging promoting positive service options and the provision of active personal support is required to address the unmet need for respite in carers of people with dementia. [ABSTRACT FROM AUTHOR]

Purpose Co-existing health conditions and frequent hospital usage are pervasive in homeless populations. Without a home to be discharged to, appropriate discharge care and treatment compliance are difficult. The Medical Respite Centre (MRC) model has gained traction in the USA, but other international examples are scant. The purpose of this paper is to address this void, presenting findings from an evaluation of The Cottage, a small short-stay respite facility for people experiencing homelessness attached to an inner-city hospital in Melbourne, Australia.Design/methodology/approach This mixed methods study uses case studies, qualitative interview data and hospital administrative data for clients admitted to The Cottage in 2015. Hospital inpatient admissions and emergency department presentations were compared for the 12-month period pre- and post-The Cottage.Findings Clients had multiple health conditions, often compounded by social isolation and homelessness or precarious housing. Qualitative data and case studies illustrate how The Cottage couples medical care and support in a home-like environment. The average stay was 8.8 days. There was a 7 per cent reduction in the number of unplanned inpatient days in the 12-months post support.Research limitations/implications The paper has some limitations including small sample size, data from one hospital only and lack of information on other services accessed by clients (e.g. housing support) limit attribution of causality.Social implications MRCs provide a safe environment for individuals to recuperate at a much lower cost than inpatient admissions.Originality/value There is limited evidence on the MRC model of care outside of the USA, and the findings demonstrate the benefits of even shorter-term respite post-discharge for people who are homeless. [ABSTRACT FROM AUTHOR]

Parent-carers need support to continue to care for their child with significant disability in their home. There has, however, been little evidence that respite interventions have consistent or enduring beneficial effects on carer well-being. This article reports the findings of a qualitative study which adopted an Appreciative Inquiry philosophy to interview parent-carers of children with significant intellectual and/or developmental disabilities on how formal support services have helped them maintain their health and well-being, and disability support staff on how they help such parent-carers foster their health and well-being. We conclude that better communication and collaboration between service providers and users, more targeted training of workers, and embracing a person-centred and family-centred approach to respite services are needed. In addition, clearer definition and communication of the scope of respite services are required to best support families of children with significant disability in their home. [ABSTRACT FROM AUTHOR]

Given the social burden and significant cost of dementia care in Australia, finding evidence-based approaches that improve outcomes, maintain independence, and reduce the impact on patients and families is essential. Finding effective ways to train and assist the healthcare staff who support these individuals is also critical, as they are considered to be at risk of workplace stress, burnout, and other psychological disturbances which negatively affects standards of care. The current paper describes a protocol for evaluating the effects of a Montessori-based approach to dementia care, in non-residential respite centres. An 18 month prospective observational, cohort controlled design is suggested that will compare participants from a community respite service that has undergone a Montessori-based workplace culture change and those from a service that provides a person-centred ‘care as usual’ approach. To achieve this, the protocol includes the assessment of participants across multiple variables on a monthly basis including the cognitive, behavioural, and emotional functioning of clients with dementia, levels of caregiver burden experienced by informal carers, and burnout, compassion satisfaction and workplace engagement among respite staff. The protocol also employs a qualitative evaluation of program fidelity. This approach will provide further insight into the potential benefits of early intervention with Montessori approaches for persons living with dementia in the community, their caregivers, and the staff and volunteers who assist them. [ABSTRACT FROM AUTHOR]

Abstract: Family members continue to be the predominant providers of support, care and accommodation for loved ones with mental health issues, and empirical studies suggest that accessing mental health respite can be helpful for both carers and consumers. However, the availability of, and access to, this respite in Australia is far from optimal. Major issues have also been identified such as low utilisation, the inappropriate and inflexible nature of services and the inability of services to respond to situations where multiple needs exist. This article presents findings from a small evaluation of a pilot residential respite service. Semi‐structured interviews were conducted with eight family members/carers and four consumers using the service, and five service providers. In addition, anonymised sociodemographic information about all users of the service in the first 9 months of its operation were analysed. Reflecting the current limitations around respite options, the majority of family members/carers and consumers were appreciative of, and satisfied with, the service. The research highlighted issues such as availability and suitability of respite, particularly when consumers had multiple and unmet needs. Mental health residential respite is often a stopgap in crisis situations and intersects with the difficulty of planning respite and shortages in affordable supported accommodation. Furthermore, the ramifications of individualised funding for people with “psychosocial disability” in the new Australian National Disability Insurance Scheme (NDIS) remain unclear. While family members and carers may benefit indirectly from NDIS funding, it is especially important at this time that the need for more suitable, recovery‐oriented respite services is highlighted. [ABSTRACT FROM AUTHOR]

Background: the demand for residential respite care for older persons is high yet little is known about the occurrence of harm, including death in this care setting. Objective: to compare the prevalence and nature of deaths among residential respite to permanent nursing home residents. Design: retrospective cohort study. Setting: australian accredited nursing homes between 1 July 2000 and 30 June 2013. Subjects: respite and permanent residents of Australian accredited nursing homes, whose deaths were investigated by Australian coroners. Methods: prevalence of deaths of nursing home residents were calculated using routinely generated coronial data stored in the National Coronial Information System. Odds ratios (OR) were calculated to examine residency (respite or permanent) by cause of death. Results: of the 21,672 residents who died during the study period, 172 (0.8%) were in respite care. The majority of deaths were due to natural causes. A lower proportion occurred in respite (n = 119, 69.2%) than permanent (n = 18,264, 84.9%) residents. Falls-related deaths in respite as a proportion (n = 41, 23.8%) was almost double that in permanent care (n = 2,638, 12.3%). Deaths from other injury-related causes (such as suicide and choking) were significantly more likely in respite residents (OR = 2.0; 95% confidence interval: 1.1-3.6; P = 0.026). Conclusions: this is the first national cohort study examining mortality among respite residents. It established that premature, injury-related deaths do occur during respite care. This is the first step towards better understanding and reducing the risk of harm in respite care. [ABSTRACT FROM AUTHOR]

Background: There are limited respite services for palliative care patients and their families in the Northern Territory (NT). The high prevalence of complex chronic diseases, limited access to primary care services, and the poor living situations of many Aboriginal and Torres Strait Islander Australians result in high hospitalisation rates and pressure on tertiary health services. Palliative Care NT identified a need for a flexible, community based, culturally appropriate respite service in Alice Springs. It was of particular interest to assess the impact of the respite service on the extent to which hospital resources were accessed by this population of patients. Methods: Respite service use and hospital use data were collected over two time periods: the 12 months prior to the establishment of the service; and the first 10 months of the operation of the service. The financial implications of the facility were assessed in terms of the National Weighted Activity Unit (NWAU). Of primary interest in this study was the impact of the respite service on admissions to the Emergency Department (ED), to the Wards, and to the Intensive Care Unit (ICU). The amount of ventilator hours consumed was also of interest. Results: Overall, there was a mean cost saving of $1882.50 per episode for hospital admissions with a reduction in: hospital admissions; mean length of stay; Intensive Care Unit (ICU) hours; and ventilator hours. Conclusions: The establishment of the respite service has met an important and unmet need in Alice Springs: provision of respite where none has existed before. The service did assist with savings to the health department which could contribute to the cost of the facility over time. Two features of the respite facility that may have contributed to the savings generated were the enhanced coordination of care for patients with complex chronic diseases, as well as improved medication compliance and symptom management. [ABSTRACT FROM AUTHOR]

To examine the (1) cohort of individuals living at home with Home Care Packages (HCPs) in 2016, (2) their access to other aged care services after HCP commencement, and (3) their hospital and ambulance service utilization. A cross-sectional study was conducted using integrated aged care and health care data contained within the National Historical Cohort of the Registry of Senior Australians. This study included people who accessed HCP between January 1, 2016 and December 31, 2016. The access to permanent residential aged care, transition care, respite care, hospital and ambulance services among Australian HCP recipients ≥65 years old in 2016 was evaluated. Descriptive statistics were employed. In 2016, 84,681 individuals received HCPs, of which 68.4% (n = 57,942) accessed HCP levels 1‒2, 26.0% (n = 22,057) accessed HCP levels 3‒4, and 5.5% (n = 4682) accessed both care levels within the year. Of the individuals receiving HCP, 34.0% (n = 27,787) started services that year and 16.7% (n = 14,117) moved to permanent residential aged care, 18.4% (n = 15,592) used respite care and 5.8% (n = 4937) used transition care that year. Emergency department (ED) presentations [43.6%, 95% confidence interval (CI) 43.3‒44.0] were the most common hospital encounters, followed by inpatient hospitalizations for any reason (43.3%, 95% CI 42.9‒43.7), and unplanned hospitalizations (38%, 95% CI 37.6‒38.3). Forty-four percent (44.5%, 95% CI 43.9‒45.0) of individuals utilized ambulance services. ED presentations, hospitalization for any reason, and unplanned hospitalizations were more common in individuals receiving HCP levels 3‒4 compared with those accessing HCP levels 1‒2. HCP recipients in Australia have frequent hospitalizations, including ED presentations. In addition, almost 1 in 5 access respite care and 16.7% transition to permanent residential care each year. As the population accessing HCP is increasing, adequate support for these individuals to live well at home and avoid health events that lead to hospitalizations are necessary. [ABSTRACT FROM AUTHOR]

Many individuals with severe mental illness (SMI) require the support of an informal carer, such as a family member or close friend, to assist with everyday living. The difficulties and altered life circumstances experienced by individuals with SMI result in carers taking on significant responsibilities. The current study aimed to address the benefits to carers of several days relief from their caring responsibilities. Carers (N = 9) of a cohort of individuals with SMI who attended a therapeutic recreation initiative, Recovery Camp, were surveyed in late May 2015. A custom-designed instrument using open and closed questions was administered. Data were analyzed using the constant-comparative method. Participants reported negative health effects that they directly associated with their caring responsibilities. The experience of having a break when their care recipient attended Recovery Camp was positive for all participants, highlighting the need for respite services. Further research is required to explore the specific respite needs of individuals who provide care to those with SMI to reduce the burden experienced by these vulnerable populations. [ABSTRACT FROM AUTHOR]

In the Australian context, the out-of-home care of children and respite service for older adults are segregated. Yet internationally there has been a shift toward intergenerational programs that purposefully bring together younger and older people for mutual benefits. This paper examines the enablers of, supports for, and constraints of introducing intergenerational care programs (IGC) within the Australian legislation and regulations of child-care and aged-care programs. In doing so, program design features, workforce strategies, and built environment are considered. The literature indicates that the meshing of standards into IGC programs provides an opportunity to make intergenerational care an attractive model for respite to caregivers and recipients of care, while providing intergenerational contact for younger families. Such a program is likely to be cost effective with economies-of-scale workforce efficiencies. Future research will involve a needs assessment of potential consumers to explore the possible demand for intergenerational care programs within Australia before conducting a trial of different intergenerational care programs. [ABSTRACT FROM PUBLISHER]

Issue Addressed: Day-respite care opportunities for people with dementia help prevent informal carer burnout and enable ageing in place. Care workers in these settings are an under-researched workforce who play a pivotal role in providing an engaging and supportive environment for clients with dementia. This study aimed to understand their experiences of providing care for people with dementia., Methods: An interpretive phenomenological analysis explored the factors that challenge and enable day-respite centre workers of the sole facility in one regional Australian town to provide, what they perceive to be high-quality, person-centred care for people with dementia. Thematic analysis revealed four themes relating to the experience of providing care to people with dementia in this day-respite centre., Results: Care challenges associated with the symptoms of dementia were recognised by participants; however, these issues were mitigated by the powerful enabling factors, including a strong focus on dementia-friendly care, operating within the centre. Thematic analysis yielded four themes of a person-centred workplace culture and strategy, embedded communication practices, provision of a safe and engaging environment and positive staff attributes. These themes were perceived to make participants' jobs more enjoyable, as well as improve their clients' and carers' quality of life., Conclusions: Day-respite centres offer a valuable resource for people with dementia and their carers, and their success depends on several key environmental and workforce factors. Accordingly, other facilities targeted at caring for this population should assess the feasibility of adopting similar strategies, including selecting and training specialised care staff, adapting the care environment to suit clients' physical and behavioural needs. and establishing routine multi-channel communication methods that effectively connect staff with other care providers, their clients, and their clients' carers. SO WHAT?: The lessons learned in this research could be implemented throughout the wider web of dementia care. Strategies might include the careful selection and training of staff; the provision of dedicated, safe dementia-friendly wards; and routine communication key stakeholders to ensure met-needs care. While there would be a need to scale such care to suit different individual care providers, even seemingly simple strategies would likely have positive effects in optimising care for people diagnosed with this debilitating neurocognitive disease., (© 2022 Australian Health Promotion Association.)

Aim This study examined factors influencing personal care workers' intentions to stay or leave Australian aged care employment - especially for older workers. Background Retention of personal care workers is particularly important in aged care as they provide the majority of the direct care via community aged care or long-term aged care environments. However, there is limited research on what drives their turnover and retention. Method A survey was conducted during 2012 collecting 206 responses from workers within community and long-term aged care in four organisations in Australia. Result Perceived supervisor support, on-the-job embeddedness and area of employment were identified as predictors of both intention to stay and to leave, although the relationship strength differed. Community care workers were more likely to stay and reported more supervisor support than long-term care workers. Unexpectedly, age and health status were not predictors of staying or leaving. Conclusion While there are similarities between retention and turnover motivators, there are also differences. Within a global context of health worker shortages, such new knowledge is keenly sought to enhance organisational effectiveness and sustain the provision of quality aged care. Implications for nursing management Retention strategies for older workers should involve increasing supervisor support, and seeking to embed workers more fully within their organisation. [ABSTRACT FROM AUTHOR]

The article discusses a pre-test and post-test study of the physical and psychological impact of out-of home respite care on caregivers of children with life-threatening illnesses. The study included a consecutive sample of 58 parental caregivers of children who were admitted to a children's hospice for out-of-home respite. Results showed the effectiveness of out-of-home respite care in improving physical and psychological adjustment of caregivers.

This article draws from research carried out in Australia, but makes connections with policy and practice in the four countries that comprise the UK into the relationship between the use of day clubs, sometimes referred to as day centres, and enhanced social connectedness, resilience, and mental and physical health. As part of this process, interpretations of commonly used terminology such as ‘care’, ‘protection’ and ‘vulnerability’ are subject to critical review. In addition, the tensions that exist between self-defined forms of well-being and support service assessment criteria, which prioritise ‘risk’ and particular aspects of physical safety, are subject to interrogation. The purpose of this article is to explore how a form of service often associated with maintenance can be reconfigured to promote shared ownership and counter social isolation and limitation and research carried out by Fawcett (2011) is used as a case study to illustrate the currency of well-being in policy and practice. The article can also be seen to have a wider brief which is to examine the policy to practice interface and the ways in which the delivery of care services can so easily disable rather than enable and lead to the erosion of autonomy and well-being. [ABSTRACT FROM AUTHOR]

While many people with dementia require institutional care, having a co-resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investigates carer beliefs regarding out-of-home respite services and why some carers do not utilise them. A total of 152/294 (51.7%) carers of community-dwelling people with dementia ( NSW, Australia) who were sent a survey completed it (November 2009-January 2010). Despite reporting unmet need for both services, 44.2% of those surveyed were not utilising day respite and 60.2% were not utilising residential respite programmes. Binary logistic regression models were used to examine factors associated with non-use using the Theory of Planned Behaviour within an expanded Andersen Behavioural Model on a final sample of 113 (due to missing data). The model explained 66.9% of the variation for day centres, and 42% for residential respite services. Beliefs that service use would result in negative outcomes for the care recipient were strongly associated with non-use of both day care [ OR 13.11; 95% CI (3.75, 45.89)] and residential respite care [ OR 6.13; 95% CI (2.02, 18.70)] and were more strongly associated with service non-use than other predisposing, impeding and need variables. For some carers who used services despite negative outcome beliefs, the benefits of respite service use may also be diminished. To improve use of out-of-home respite services in this vulnerable group, service beliefs should be addressed through service development and promotion that emphasises benefits for both carer and care recipients. Future research utilising behavioural service models may also be improved via the inclusion of service beliefs in the study of health and social service use. [ABSTRACT FROM AUTHOR]

Addressing the use of respite services by caregivers of individuals with dementia is important to improving social support among this vulnerable group. This article uses theory to conceptualize the behavioral, normative, and control beliefs that caregivers of individuals with dementia associate with the use of out-of-home day centers for respite. Interviews and focus groups with 36 caregivers were conducted to explore the beliefs of both users and nonusers of these services. While service users held positive beliefs, nonusers perceived negative outcomes for the care recipient with dementia or faced barriers associated with the recipient's behavioral or physical needs. To address negative perceptions, nurses may need to promote the benefits of day centers for both caregivers and care recipients. However, improvements in program activities and environments, staff development, and caregiver support are also required to address negative beliefs and meet the needs of those currently not accessing care. [ABSTRACT FROM AUTHOR]

Ageing in Place policies have transferred responsibility for many frail elderly people and those living with dementia from residential to in-home care. Despite this placing a greater obligation on families, in Australia carers continue to under-use day respite services. This qualitative design study identified issues around the use of day respite care from the perspective of the family carer, focusing on barriers to attendance and strategies to facilitate attendance. Telephone interviews were held in 2007 with Tasmanian carers whose family member refused to attend day respite care (ten carers) and those whose family member attended (17). Carers considering day respite care were often overwhelmed by the quantity of information, confused about the process, and worried about the recipient's safety in an unfamiliar environment. They felt anxious about public acknowledgement of the condition leading to fear of embarrassment. Day respite care users appreciated the break it provided them and the opportunity for their family member to socialise. To facilitate a greater uptake of day respite care, reliable information sources and strategies to help carers deal with the emotions they face on a daily basis, together with a wider social acceptance of dementia, are important. Furthermore, carers need an opportunity to talk with others, enabling them to gain support from those who have successfully introduced a family member to day respite care. [ABSTRACT FROM PUBLISHER]

Australian health professional bodies promote the use of respite to ease carer burden, following well-established findings that carers often face physical, mental, social, and financial strain while providing informal care. This narrative review examined the use and impacts of respite for older clients, with a particular focus on Australian research and on dementia respite. It was found that despite reports of high satisfaction from caregivers with respite use, barriers, such as caregiver concerns for the well-being and safety of the care recipient during respite, limited flexibility for short-notice respite booking, and low provision of support and education post respite, impacted on the accessibility and efficacy of respite care. It was concluded that respite care needs to move away from a custodial model to a more psychological model of care, and that more natural and flexible models (e.g., host family respite), integrated with increased post-respite support and psychosocial education, are likely to be beneficial and need further evaluation. [ABSTRACT FROM AUTHOR]

Families/carers relinquishing the care of family members with a disability into the care of out-of-home respite facilities is an under-researched area in the disability field. With this in mind, the aim of this study was to explore the factors that lead to families relinquishing care, the potential early indicators that families are considering relinquishment; the factors that may prevent relinquishment and the outcomes for families/carers after relinquishment occurs. Thirty-two client files (of individuals for whom families have relinquished their care in a defined 12-month period) were reviewed for information around their relinquishment into out-of-home respite care facilities for an extended stay. Staff members involved with these families (a total of 17) were also interviewed to provide more information. A thematic analysis of the results found that the factors that led to relinquishment could be categorised into: (1) characteristics inherent to the individual with intellectual disability; (2) characteristics inherent to the family/carer; and (3) characteristics associated with the support context that the carer/family is currently experiencing. It was also found that families'/carers' experienced positive outcomes after relinquishment had occurred; however, feelings of guilt and mourning were initially felt. Extra supports (e.g. increased respite care, planning for movement of the family member into out-of-home permanent accommodation and case management) and positive interventions such as parent training were highlighted as potential strategies to achieve more lasting benefits from short-stay out-of-home respite care. [ABSTRACT FROM AUTHOR]

The Australian Red Cross Older Carers Program was developed in 2003 to support the unique needs of "older carers" aged 65 and older (50 if Indigenous) who care for a person (a care recipient, usually a family member) aged 18 or older who have a permanent disability. The aim of the program was to provide intensive case planning, management, and volunteer support that would assist older carers to more readily access respite and continue their caring role in the home. To help achieve this end, ongoing individualised and holistic assistance involving older carers in decision making was an integral component of the Older Carers Program, as was the use of regular home visits by program staff. The Older Carers Program evaluation was both a process and outcome evaluation. Much of the evaluation research focused on the extent to which it had met its stated aims and objectives. However, because the program was quite new and innovative there was a significant further focus upon the processes and activities within the program. At the time the evaluation research was conducted (May 2005), the program had been in operation for 22 months. The population group was identified as those persons (older carers) who had been part of the program between July 2003 and March 2005. Of the 96 older carers who had accessed the program in the specified period, 62 agreed to participate in our research. The methodology consisted of an audit or the program database, in-depth interviews with older carers, and contextual data collection involving program staff and other stakeholders, [ABSTRACT FROM AUTHOR]

The past two decades have seen a growing awareness of the unique challenges faced by carers and recognition of their valuable contribution to society. Accordingly, assumptions about car, giving (and receiving) are changing; researchers and policy-makers alike are beginning to incorporate notions which pay at least lip service to supporting or empowering caregivers and receivers through needs-led rather than service-led support. However, there remains a significant lack of understanding of many of the issues faced by carers and care-recipients. This lack of understanding surfaces in polices and programs that tend to ignore the experiences of significant cohorts of carers, particularly older cares, Indigenous carers and carers from remote regions. The program upon which this paper is based is unique in that it does indeed address many of the identified gaps in service provision vis-à-vis older carers in the community. The Western Australian (WA) Australian Red Cross (ARC) Older Carers Program (OCP) was developed to support the unique needs of carers aged 65 years and older (50 if Indigenous) who care for a person aged 18years or older and who have a permanent disability. The aim of the program was to provide intensive case planning, management and volunteer support that would assist older carers to more readily access respite and continue their caring role. To achieve this end, ongoing, individualised and holistic assistance involving carers in decision-making was an integral component of the OCP processes and activities. Nevertheless, in the course of our evaluation research of the program we found that, despite the overall success of the program in meeting its objectives, significant barriers to respite existed among a significant group of participants (which we will cart a ‘sub-group’). Our research identified these sub-groups as rural carers, single parents/carers, carers of high-need care recipients and ‘highly stressed’ carets. These unique needs in turn formed barriers to access and are an important consideration in further debate around the important issue of older carers in the community and respite care programs in Australia. [ABSTRACT FROM AUTHOR]

Whilst access to respite care has been found to represent an important source of support for terminally ill patients and their families, the availability of these services to Indigenous Australians has to date remained undocumented. This potential need for respite in Indigenous communities was explored as part of a National Health and Medical Research Council (NH&MRC) funded study designed to develop an innovative model for Indigenous palliative care. The data needed for model development were collected through a series of open-ended, qualitative interviews conducted with a cross-section of consumers and health professionals within the Northern Territory, Australia. The findings reflected a serious need for Indigenous respite services, coupled with a severe deficiency in the present availability of these services, especially within rural and regional areas. This lack of local respite services was documented to be negatively impacting upon the ability of carers to fulfil their caring duties and was found placing undue physical, emotional and economic stress upon carers, patients and their families. Furthermore, the lack of access to local respite services documented was found to be forcing rural and regional patients to relocate to metropolitan areas away from the family, community and land to which strong ties are held. The lack of Indigenous respite services was also found to obstruct patients’ and carers’ wishes for death to occur in the local community, rather than in far away cities. Significant obstacles were found to be hindering the provision of respite care to Indigenous Australians, namely beliefs about families looking after their own, resource restrictions, limited staff availability in local areas, as well as problems associated with hostel use in metropolitan areas. The conclusions drawn from this study suggest the importance of tackling the obstacles preventing local respite services being established in areas close to where patients and carers live. [ABSTRACT FROM AUTHOR]

Sydney Children's Hospitals Network (SCHN) is the largest network of hospitals and services for children in Australia. It is a public service of NSW (New South Wales) Health, part of the NSW Government. The NSW geographic area serviced is 800,628 square km, with a population of 7,861,100 people, but children come from across Australia for the expert care SCHN provides. SCHN cares for 151,000 children every year, with over 50,000 inpatient admissions and over 1.1m outpatient encounters. More than 65% of these presentations consist of patients who have an established relationship with SCHN due to the complex/chronic nature of their diagnosis(s). SCHN wanted to connect with their outpatients, to inform/support changing care needs, to improve patients' understanding of their conditions and to connect information across providers. All patients have providers locally outside the network, so SCHN wanted to support the patient as the conduit of their information, ultimately improving the care experience and health outcomes. SCHN had a vision of giving patients a digital record they could interact with meaningfully, centered around them. This digital vision would address several care delivery challenges: inefficient communication missed appointments managing changing conditions and medications lack of a shared record The digital vision became a co-design project with SCHN's consumers, named the "Memory" project. The vision became reality in May 2017 with the successful trial of the "My Health Memory" (MHM) smartphone application. The first iteration of MHM allowed patients and carers to: Efficiently manage appointments and minimise care delays: receive new and updated appointments (including telehealth links straight to device) automatically from the EHR to their app request reschedules from their app receive appointment reminders, ensuring they come to appointments, are ready for care, and can find their way with digital wayfinding instructions staff can asynchronously review and reschedule requests via a request list and rebook Exchange clinical data to support care: access discharge summaries, care plans and reconciled medication lists from their app. push education to the app Communicate securely: clinical staff can securely message patients/carers from their workflow, and patients/carers can respond from their app. communications are automatically saved as a progress note in the EHR, eliminating manual documentation trial group implementation was a success resulting in a hospital wide implementation March 2018. Metrics achieved include: 80% of eligible patients registered (from trial group) Outpatient clinic No Show rates decreased by 74%. 8,748 messages sent between MHM and the EHR resulting in 30% fewer outpatient calls to nursing staff Reduction in secondary sources of truth for patient communication, reducing iatrogenic risk. 94.9% of app users have rated MHM as being useful in the care of their child. over 7,000 EHR documents shared to the app Over 6,000 activated users (October 2018) The 6 month MHM app roadmap includes; patient/carer uploaded documents and document sharing. Surveys with EHR integration & integration to Australia's My Health Record. Sydney University have commenced a study On the MHM app titled Leveraging e-Applications for Patients (and families). [ABSTRACT FROM AUTHOR]

Objectives: Residential respite care (RRC) is a vital service that supports older people and their informal caregivers to continue to live in the community. Older people in RRC have an increased risk of injury‐related harm, such as choking and suicide, compared to permanent nursing home residents. However, the opportunities for the prevention of harm during a RRC admission are largely unknown. This study developed recommendations to reduce harm and improve quality of care for older people in RRC. Methods: Experts developed, refined and prioritised recommendations through two consultation forums applying the modified nominal group technique and a follow‐up online survey. Participants were purposively sampled from an existing network and were selected based on their expertise in aged care practice, nursing, policy, research, caregiver advocacy and quality improvement in the aged and healthcare sectors. Haddon's Matrix, an injury prevention framework, was applied to the recommendations. Final recommendations were released to over 300 organisations for validation and feedback. Results: Five experts were involved in forum one, seven attended forum two, and a further seven completed the survey. Seventeen draft recommendations were developed and refined to 11 final recommendations, four of which were prioritised as most important for implementation. These included the following: (a) a planned preventative care model of RRC; (b) facilities that specialised in RRC; (c) optimising information gathered on RRC residents; and (d) a standardised procedure for admission, handover and discharge from RRC. We received limited feedback from the organisations, which did not alter the recommendations. Implications for practice: The recommendations developed in this study provide a valuable basis for the development of strategies to reduce harm and improve care in RRC and are a valuable first step towards improving practice. The next step is to empirically test the suggested recommendations to determine their effectiveness. [ABSTRACT FROM AUTHOR]

Material and Methods: A population-based epidemiological study was conducted using publicly available datasets from the Australian Institute of Health and Welfare and Australian Bureau of Statistics. The incidence of service utilization by younger people (<65 year) and per 10,000 citizens 0-49, 50-54, 55-59, and 60-64 years old per year was estimated. Negative binomial regression models were used to estimate incidence rate ratios., Results: Between 2008-2009 and 2015-2016 the number of younger people accessing services increased for home care services by 103.2% and transition care by 131.9% but decreased for permanent residential care by 0.4%, and respite care by 2.4%. Permanent residential care incidence use decreased for the overall population (incidence rate ratio = 0.98, p  < 0.001) and in those 55-59 years old (incidence rate ratio = 0.97, p  < 0.001) and for respite care incidence use decreased in those 0-49 years old (incidence rate ratio = 0.93, p  = 0.001). The incidence use of home care increased in the overall group (incidence rate ratio = 1.04, p  < 0.001) and in those 50-54 (1.08, p  < 0.001) and in those 55-59 years old (incidence rate ratio = 1.03, p  < 0.001). The use of transition care services increased significantly in all age groups (overall incidence rate ratio = 1.09, p  < 0.001)., Conclusions: The overall use of permanent residential care has decreased along with the use of respite in the youngest people, and the use of home and transition care services have increased. Efforts to keep young people out of residential aged care may have redirected them to home care services.Implications for rehabilitationThe number of young people (<65 years old) with disability using aged cares services in Australia has increased significantly between 2008-2009 and 2015-2016.The overall use of permanent residential care has decreased along with the use of respite care, and the use of home and transition care services have increased, which should be encouraged.Development of targeted rehabilitation support programs to support young people with disability housed in residential aged care may help to better cater their care needs.Development of transition pathways to shift young people with disability to appropriate support programs may help to reduce the number of younger people with disability in aged care services.

Objectives: To examine the use of residential respite care and determine associations between respite care and total days spent in residential care (respite days plus long-term care days)., Design: A retrospective cohort study of individuals accessing aged care services in Australia using the National Historical Cohort of the Registry of Senior Australians was conducted., Setting: Residential respite care (short stays in residential aged care homes) and long-term residential care accessed in all government-subsidized residential aged care homes in Australia., Participants: This study included people who were approved for government-subsidized residential respite care between January 2005 and June 2012 (n = 480,862) and included a 2-year follow-up period., Methods: Poisson regression models were used to examine associations between use of residential respite care and number of days spent in residential care., Results: Of people approved for residential respite care, 36.9% used their approval within 12 months (32.0% used respite once and went directly to long-term care without returning home, 40.7% used respite once and did not go directly to long-term care, and 27.3% used respite ≥2 times). Compared with people who did not use respite care, using respite care once and not going directly to long-term care was associated with less total days in residential care [incidence rate ratio (IRR) 0.68, 95% confidence interval (CI) 0.67-0.69; P < .001] and using respite care ≥2 times was also associated with fewer days (IRR 0.86, 95% CI 0.84-0.87, P < .001). Using respite care once and going directly to long-term care was associated with more days in residential care (IRR 1.11, 95% CI 1.10-1.12, P < .001)., Conclusions and Implications: Using residential respite care was associated with fewer days spent in residential care when people returned home after using respite. The findings suggest that using residential respite as intended by returning home after use achieves the goal of helping people stay living at home longer., (Copyright © 2019 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Aged care support services in Australia are delivered through home care packages, permanent residential care, respite care and transition care. This study aimed to determine age and gender specific incidence rates of aged care service utilisation in Australia between 2008-09 and 2015-16.Methods: This is a population-based epidmiological study of people accessing aged care services in Australia. The trends and characteristics of people (over the age of 65 years old) accessing aged care services in Australia were evaluated, using data (2008-09 and 2015-16) from the Australian Institute of Health and Welfare and Australian Bureau of Statistics. The yearly utilisation incidence rates (per 1000 people) per service type were calculated and changes in incidence rate ratios (IRR) of service utilisation for the study period were estimated using Poisson regression models.Results: The proportion of older Australians aged ≥65 years who used aged care services remained similar between 2008-09 (5.4%, N = 208,247) and 2015-16 (5.6%, N = 248,669). However, the incidence use of specific services changed during the study period. Specifically, admissions into permanent residential care decreased (from 23.8/1000 people in 2008-09 to 19.6/1000 in 2015-16, at a IRR of 0.84/year, p < 0.001) but increased for transition care (from 4.3/1000 in 2008-09 to 6.6/1000 in 2015-16, at a IRR of 1.57/year, p < 0.001) and home care packages (from 8.04/1000 in 2008-09 to 12.0/1000 per 1000 in 2015-16, at a IRR of 1.52/year, p < 0.001). Between 2008-09 and 2015-16, the greatest changes in IRR were observed in males aged 80-89 years accessing transition care (IRR = 1.68/year, p < 0.001). A higher proportion of people aged between 80-89 years (≥45%), females (≥60%), Australia born (≥ 60%) and English speakers (≥80%) used all the service types.Conclusions: Patterns of service utilisation for aged care services changed over the study period with a decrease in incidence of individuals accessing permanent residential care but increased for other service types. This finding reflects changes in attitudes regarding ageing in place and policies. These findings are helpful to inform key stakeholders on service planning to further improve quality of the aged-care services in Australia. [ABSTRACT FROM AUTHOR]

The article reports on a 2017 study by Carers Australia, which has found that carers of people with dementia face particular difficulties when accessing residential respite care.

Objective: To identify the perceptions of parents of children who died from cancer regarding the palliative and supportive care they received in hospital and in community settings., Method: Face-to-face or telephone questionnaires. Setting Tertiary paediatric oncology centres in Western Australia, New South Wales, Queensland and Victoria., Participants: 69 parents., Results: Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. Parents preferred to care for their child at home wherever possible throughout the palliative care trajectory of their child's cancer and were well supported by immediate and extended family and friends. However, many families were affected emotionally and financially by the burden of caring for their child with incurable cancer. Families required financial and practical assistance with providing care from their child. Parents wanted and needed more practical resources and information to assist with the management of their child's nutrition and pain, as well as for the support of their other children., Conclusion: Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and should be linked and integrated with the treating hospital in collaboration with community services.