"Already too late": A qualitative study of respite care among mothers of children with special healthcare needs and disabilities.

BACKGROUND: Parents of children and youth with special healthcare needs (PCHN) are under particular pressure that can lead to physical, emotional, and social difficulties. Respite care services provide temporary relief for PCHNs from their caregiving responsibilities. Several studies have examined why PCHNs do not make greater use of these potentially supportive services, but existing studies do not focus on the psychological or subjective aspects of this process. OBJECTIVES: The present study aims to understand the reasons why PCHNs, mothers in particular, (do not) use these services, with the underlying goal of understanding what parents' needs and expectations are regarding these services. METHODS: The present study is based on a qualitative thematic analysis of the experience of respite services of 14 Belgian mothers PCHN. RESULTS: The results showed that PCHNs regularly exceed their limits and are often on the verge of physical and emotional exhaustion and that respite services could be a way to meet their needs. However, issues of availability and accessibility impede equal access to these services. CONCLUSIONS: These findings highlight the need for a comprehensive approach to respite care, by including PCHNs in the process as early as possible, not normalizing exhaustion as the trigger, and not focusing solely on the needs of children when the need arises. IMPLICATIONS FOR PRACTICES: Increasing the flexibility of the services, providing a reassuring environment, facilitating administrative procedures, and providing information about these services as early as possible appear to be priorities for facilitating the use of respite care services.

Care coordination Experiences of Low-Income Parents of Children and Youth with Special Health Care Needs: An Exploratory Study.

OBJECTIVE: To explore parent perspectives on barriers, facilitators, and priorities related to coordinating care for children and youth with special health care needs (CYSHCN). METHODS: Thirty-nine parents of Medicaid-eligible CYSHCN participated in focus groups and completed a brief survey about their child's health insurance coverage, access to specialized services, and need for support with service coordination. Survey data were analyzed using descriptive statistics. Focus group data were analyzed by multiple independent coders using an approach that combines inductive reasoning with predetermined coding strategies. RESULTS: Sixty-seven percent of parents reported that they needed care coordination support. Qualitative data were organized into three main themes: the work of caregiving; the impact of caregiving on multiple aspects of parents' lives; and caregivers' needs related to emotional acceptance, service referrals and navigation, and developmental transitions. CONCLUSIONS: Findings support importance of services such as medical homes, care coordinators, peer navigators, respite care, and transition planning.

A Narrative Review of Pediatric Respite Care Initiatives in the United States.

Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The study objective was to conduct a national evaluation of pediatric respite care programs to identify and describe how states provide and fund respite care for children. The study approach adhered to the Scale for the Assessment of Narrative Review Articles quality standards using multiple data sources including engagement with the existing literature, content analyses of public-facing websites, and conversations with 40 stakeholders from 15 states. States offered respite services in a variety of ways: Medicaid waivers used to fund respite care, state-funded programs that provide respite, and philanthropy-based respite facilities. This narrative review revealed the creativity involved in different settings to improve respite access, staffing, and reimbursement. Suggestions to address the unmet respite needs of families included establishing a respite home, improving Medicaid reimbursement, expanding Medicaid waiver eligibility, providing a respite benefit through Medicaid, implementing nursing workforce initiatives, and centralizing staffing databases.

Barriers to Respite Care for Children with Special Health Care Needs.

OBJECTIVE: The objective of this study was to estimate time-specific, population-based prevalence of 14 specific barriers to respite services, as reported by parents of children with special health care needs (CSHCN) with and without emotional, behavioral, or developmental problems (EBDPs), and to identify individual, family, and environmental characteristics associated with the most common barriers to respite care for families of CSHCN. METHODS: Descriptive, bivariate, and multivariable logistic regression analyses were used to examine data from the National Survey of Children with Special Health Care Needs for 2005/2006 and 2009/2010. RESULTS: Among families reporting unmet need for respite care services, service availability or transportation barriers (23.8%) and cost barriers (19.8%) were the most commonly reported obstacles among all CSHCN, followed by lack of knowledge about where to obtain respite services (12.1%) and inconvenient service times (11.3%). Reports of location or availability barriers decreased significantly from 2005 to 2009, but service time barriers increased simultaneously. All types of barriers to respite services were reported significantly more frequently by CSHCN with EBDPs than those without, even when other demographic factors were controlled for. CSHCN conditional severity and discontinuity in insurance were positively associated with cost barriers, whereas CSHCN public health coverage was associated with reduced rates of reported cost and information barriers to respite care. CONCLUSION: Increased understanding of parent-reported barriers to respite care for families of CSHCN is critical to creating structural and practice-oriented solutions that address obstacles and increase access to respite care for these vulnerable families.

Developing a nursing dependency scoring tool for children's palliative care: the impact on hospice care.

BACKGROUND: Occupancy is commonly used to measure bed management in hospices. However, the increasing complexity of children and young people and growing dependence on technology mean that this is no longer effective. AIM: To develop a dependency tool that enables the hospice to safely and effectively manage the use of beds for planned short breaks (respite care), preserving capacity for children requiring symptom management and end-of-life care. METHODS: A comprehensive literature review and existing tools were used to inform the development of the Martin House Dependency Tool Framework. Training was provided to staff and the tool was piloted before applying it across the hospice caseload. FINDINGS: The tool has been used on 431 children (93.1% of caseload). The tool enabled consistency of assessment and more effective management of resources, due to a contemporaneous understanding of the clinical needs of those on the caseload. CONCLUSION: The tool has enabled consistent and transparent assessment of children, improving safety, effectiveness and responsiveness, and the management of the workforce and resources.

Challenges for palliative care day services: a focus group study.

BACKGROUND: Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams. METHODS: A descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically. RESULTS: Four key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services' effectiveness and value for money was highlighted. CONCLUSIONS: Management and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service.

Post-hospital medical respite care for homeless people in Denmark: a randomized controlled trial and cost-utility analysis.

BACKGROUND: Being homeless entails higher mortality, morbidity, and prevalence of psychiatric diseases. This leads to more frequent and expensive use of health care services. Medical respite care enables an opportunity to recuperate after a hospitalization and has shown a positive effect on readmissions, but little is known about the cost-effectiveness of medical respite care for homeless people discharged from acute hospitalization. Therefore, the aim of the present study was to investigate the cost-effectiveness of a 2-week stay in post-hospital medical respite care. METHODS: A randomized controlled trial and cost-utility analysis, from a societal perspective, was conducted between April 2014 and March 2016. Homeless people aged > 18 years with an acute admission were included from 10 different hospitals in the Capital Region of Denmark. The intervention group (n = 53) was offered a 2-week medical respite care stay at a Red Cross facility and the control group (n = 43) was discharged without any extra help (usual care), but with the opportunity to seek help in shelters and from street nurses and doctors in the municipalities. The primary outcome was the difference in health care costs 3 months following inclusion in the study. Secondary outcomes were change in health-related quality of life and health care costs 6 months following inclusion in the study. Data were collected through Danish registries, financial management systems in the municipalities and at the Red Cross, and by using the EQ-5D questionnaire. RESULTS: After 3 and 6 months, the intervention group had €4761 (p = 0.10) and €8515 (p = 0.04) lower costs than the control group, respectively. Crude costs at 3 months were €8448 and €13,553 for the intervention and control group respectively. The higher costs in the control group were mainly related to acute admissions. Both groups had minor quality-adjusted life year gains. CONCLUSIONS: This is the first randomized controlled trial to investigate the cost-effectiveness of a 2-week medical respite care stay for homeless people after hospitalization. The study showed that the intervention is cost-effective. Furthermore, this study illustrates that it is possible to perform research with satisfying follow-up with a target group that is hard to reach. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02649595.

Cost-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia: A model-based analysis.

OBJECTIVES: To evaluate cost-effectiveness of an in-home respite care program in addition to standard community-based dementia care to support informal caregivers of persons with dementia compared with standard community-based dementia care. METHODS: An age-dependent decision-analytic Markov model was applied from a third-party payer and a societal perspective projecting results of a quasi-experimental study over a time horizon of 5 years assuming a repetition of the program every 6 months. Additionally, to deal with uncertainty and to test robustness of the model scenario, one-way and probabilistic sensitivity analyses were conducted. RESULTS: Implementing the program resulted in a quality-adjusted life year (QALY) gain of 0.14 in favor of the invention group compared with controls and an incremental cost of 1270€ from the third-party payer perspective and of 1220€ from the societal perspective. Next, an incremental cost-effectiveness ratio of 9042€/QALY and of 8690€/QALY was found in the base case, from the third-party payer perspective and the societal perspective, respectively. The scenario, one-way sensitivity, and probabilistic analyses demonstrated robustness of the base-case results. CONCLUSION: This cost-effectiveness analysis suggests that an in-home respite care program in addition to standard community-based dementia care is a cost-effective approach compared with standard community-based dementia care only. These findings provide more insight into the value of such services for the patient, the caregiver, and for society.

Challenges Faced by Family Caregivers: Multiple Perspectives on Eldercare.

The focus of this study was to identify challenges to family eldercare provision from the perspectives of both caregivers and community stakeholders. This qualitative study used data from 306 family caregivers and 116 stakeholders (aging, social, and health service professionals who work with older adults and their families) in North Dakota. Data sources included an American Association of Retired Persons-ND survey of 110 caregivers, a survey by the ND Family Caregiver Support Program (196 participants), and a Statewide Caregiving Stakeholder Survey (116 participants). Thematic analysis identified five themes: (a) financial burden of providing eldercare, (b) insufficient access to respite care, (c) difficulty finding and navigating available services and programs, (d) lack of knowledge and training on care provision, and (e) challenges related to environmental context of caregiving. Implications for working with family caregivers and developing policies for eldercare are discussed.

Unmet Respite Needs of Children With Medical Technology Dependence.

Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers. The study utilizes mixed methodology with the National Survey of Children with Special Health Care Needs (NS-CSHCN) and semistructured interviews with state-wide care coordinators to understand the gap for respite care services. Fifty-nine percent of parents who needed respite care received none. Parents of older children with MTD were more likely to report respite needs. Care coordinators described that home health shortages created barriers to respite care utilization, and the lack of respite care can lead to hospital readmission. Although respite care is a vital resource to support families of children with MTD, it is infrequently available, which can have severe consequences.

Exploring employment as a space of respite and resistance for family caregivers.

This paper challenges traditional definitions of work and leisure as separate concepts by suggesting that a space where individuals engage in employment (paid work) can, at the same time, be a space of respite (leisure) for employees who are also family caregivers. The research aims to better understand what caregivers perceive as ideal respite space, what that space means to them, how the space where employment takes place fits that ideal and what forces restrict caregivers' ability to engage with employment as a space of respite. The term space is used because a caregiver's presence in a particular space (inside or outside of a place) gives it meaning that is simultaneously social, political and emotional. We report on a qualitative intrinsic case study of primary caregivers who are both employed and providing care to relatives with dementia. Using a reflective iterative process, 12 participants were recruited and interviewed from two Canadian provinces in 2013/14. Using a non-temporal view of respite facilitated the identification of employment as an important space for caregivers to experience effective respite. Although this connection has been noted by other scholars, our research goes beyond this to identify four forces that create challenges for caregivers who want to maintain engagement with employment as a space of respite. These forces are internalised socialisation, family and organisational pressures and government policy. In addition, this research is one of the first to suggest ways that caregivers resist these forces. In concluding remarks, we reflect on the limitations of the study and offer suggestions for further research aimed at elucidating the spatiality of caregiver respite and the complex and dynamic aspects of resistance.

Multiple Stakeholders' Perspectives on Respite Service Access for People With Dementia and Their Carers.

BACKGROUND AND OBJECTIVES: People with dementia and carers do not always access respite services in a timely manner, or in some cases, at all. Although carers' perspectives on respite access have been explored, other stakeholder perspectives, especially providers and people with dementia, are underrepresented in the existing literature. The aim of this study was to synthesize multiple stakeholders' perspectives, including people with dementia, on accessing respite services in the context of dementia. RESEARCH DESIGN AND METHODS: Purposive maximum variation sampling was used. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (n = 6), carers (n = 9), respite frontline staff (n = 4), respite managers (n = 8), primary care professionals (n = 3), and policy-makers/academics (n = 5). The process of consent is outlined. Data were interpreted inductively using thematic analysis. Reflexivity was considered throughout the research process. RESULTS: Three themes ("Service Acceptability," "Navigational Knowledge and Skills," "Constructing and Adjudicating Respite Need") were identified that relate to how access to respite services is negotiated between service providers and dyads. DISCUSSION AND IMPLICATIONS: A number of the findings support previous research; however, novel findings discussed relating to the access negotiation process include (a) the ambiguous legitimacy of respite needs, in a system configured to deliver a biomedical model of care and which considers nonmedical care as a family responsibility, and (b) the constraining effects of disparate conceptualizations of "respite" between carers and providers. Future research should interrogate the appropriate boundaries of public responsibility in relation to respite service planning/delivery for dementia, with particular reference to client preferences for community and in-home provision.

DESKK Study - Development and testing of a dementia-specific respite care concept with a mobility and counselling programme: study protocol.

INTRODUCTION: Specific mobility programmes can delay functional decline in people with dementia (PwD). Family caregivers (FCs) can be relieved from care-related burden by counselling services. Respite care is a short-term inpatient care service (1-8 weeks of stay). Respite care centres (RCCs) can function as support structures for dementia care arrangements through caring-based mobility training of PwD and counselling sessions for their FCs. However, no systematic mobility or counselling programmes exist in this setting in Germany or the rest of the world. The aim of the development and testing of a dementia-specific respite care concept (DESKK) study is the development and testing of an evidence-based mobility and counselling programme for PwD and their FCs that is suitable for the respite care setting. METHODS AND ANALYSIS: A pilot-based, quasi-experimental evaluation study will be conducted in a specialised RCC for PwD. To evaluate the acceptance and usability of the development and testing of a DESKK concept, qualitative data will be collected from the RCC staff and FCs via semistandardised interviews. Quantitative data will be collected using instruments to assess effect tendencies of the concept related to mobility (PwD) and burden (FCs). Furthermore, a mixed-methods triangulation approach will be conducted. ETHICS AND DISSEMINATION: The protocol, informed consent and accompanying material given to patients were submitted by the investigator to the Ethical Review Committee of the German Society of Nursing Science. The project was examined and finally approved on 31 January 2017 (Number: 16-27). Prior to obtaining written consent for study participation, information must be given to all of the study participants in verbal and written form. The results of the study will be presented at national and international conferences and published in peer-reviewed journals. After the concept is finalised, a practice-friendly manual will be developed in which implementation components are described for other RCCs. TRIAL REGISTRATION NUMBER: NCT03578861.

The Economic Costs of Autism Spectrum Disorder: A Literature Review.

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.

Identifying Patients Experiencing Homelessness in an Electronic Health Record and Assessing Qualification for Medical Respite: A Five-Year Retrospective Review.

Our team developed a transitional care and medical respite program for people experiencing homelessness and designed a retrospective chart review study to more fully understand the unique needs of this population. Using four independent techniques, we identified individuals (N=1,656) who were experiencing homelessness during at least one hospital encounter (emergency department and/or in-patient admission) in a teaching hospital in the Southeastern United States over a five-year period. Data were manually abstracted from a random sample of patients to determine which patient encounters would or would not have qualified for medical respite if it had been available at the time. This article reports the methods used to identify people experiencing homelessness in the electronic health record, the data abstraction process, the cohort description, and the primary reasons patients would not have qualified for the medical respite program.

Health care utilization following a homeless medical respite pilot program.

OBJECTIVE: The purpose of this study was to evaluate a homeless medical respite pilot program to determine if program participants had health care utilization pattern changes and improved connection to income, housing, and health care resources post program. DESIGN: This is a quantitative descriptive pre-/post-program evaluation. SAMPLE: A total of 29 patients experiencing homelessness and discharged from an acute care hospital in the southeastern United States were provided with housing and nursing case management. MEASUREMENTS: Demographics including age, sex, race, and ethnicity were collected. Connection to primary care, mental health, substance abuse services, income, insurance, and housing were assessed at program entry and completion. Health care utilization and charge and payment data were collected 1 year prior and 1 year post-respite stay. RESULTS: Participants demonstrated reduced hospital admissions (-36.7%) and when admitted, fewer inpatient days (-70.2%) and increased outpatient provider visits (+192.6%). Health care charges for the cohort decreased by 48.6% from the year prior to the program. Housing and income improved. CONCLUSIONS: The medical respite pilot program was successful in guiding patients to community resources for more appropriate health care at a demonstrated cost savings. Participants also derived benefits in the form of improved housing and income.

What do patients and family-caregivers value from hospice care? A systematic mixed studies review.

BACKGROUND: It is not known which attributes of care are valued the most by those who experience hospice services. Such knowledge is integral to service development as it facilitates opportunities for continuous improvement of hospice care provision. The objectives of this mixed-studies systematic review were to explore patients' and their family carer views and experiences, to determine what they valued about adult hospice care in the UK. METHODS: ASSIA, PubMed, CINAHL and PsycINFO were searched from inception, up until March 2017 to identify qualitative, quantitative, and mixed-methods studies. Four additional searching techniques supplemented the main search and grey literature was included. A three-stage mixed-method systematic review was conducted with a sequential exploratory design. Thematic synthesis was used with qualitative data, followed by a narrative summary of the quantitative data. The qualitative and quantitative syntheses were then juxtaposed within a matrix to produce an overarching synthesis. RESULTS: Thirty-four studies highlighted that what patients and carers valued was generally context specific and stemmed from an amalgamation of hospice service components, which both individually and collectively contributed to improvements in quality of life. When the syntheses of qualitative and quantitative studies were viewed in isolation, the value placed on services remained relatively consistent, with some discrepancies evident in service availability. These were commonly associated with geographical variations, as well as differences in service models and timeframes. Through an overarching synthesis of the qualitative and quantitative evidence, however, notable variations and a more nuanced account of what people valued and why were more prominent, specifically in relation to a lack of social support for carers, disparate access to essential services, the underrepresentation of patients with a non-cancer diagnosis, and the dissatisfaction with the range of services provided. CONCLUSION: Review findings strengthen the existing evidence base and illuminates the underpinning elements of hospice care most valued by patients and their families. With large disparities in the availability of services, however, the underrepresentation of patients with non-malignant diseases and the limited evidence base demonstrating the adequate addressment of the social needs of carers, there continues to be considerable gaps that warrants further research.

Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms.

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.

Carer preferences for home support services in later stage dementia.

OBJECTIVES: To examine the relative importance of different home support attributes from the perspective of carers of people with later-stage dementia. METHOD: Preferences from 100 carers, recruited through carers' organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support 'package'. RESULTS: The most preferred attributes were 'respite care, available regularly to fit your needs' (coefficient 1.29, p = < 0.001) and 'home care provided regularly for as long as needed' (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall. CONCLUSIONS: These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers' preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support.

A profile of Australian mental health carers, their caring role and service needs: results from the 2012 Survey of Disability, Ageing and Carers.

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.