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.

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.

The Effectiveness of a Peer-Staffed Crisis Respite Program as an Alternative to Hospitalization.

OBJECTIVE: This study assessed whether peer-staffed crisis respite centers implemented in New York City in 2013 as an alternative to hospitalization reduced emergency department (ED) visits, hospitalizations, and Medicaid expenditures for individuals enrolled in Medicaid. METHODS: This study used Medicaid claims and enrollment data for January 2009 through April 2016 to estimate impacts on ED visits, hospitalizations, and total Medicaid expenditures by using a difference-in-differences model with a matched comparison group. The study sample included 401 respite center clients and 1,796 members of the comparison group. RESULTS: In the month of crisis respite use and the 11 subsequent months, Medicaid expenditures were on average $2,138 lower per Medicaid-enrolled month and there were 2.9 fewer hospitalizations for crisis respite clients than would have been expected in the absence of the intervention (p<.01). CONCLUSIONS: Peer-staffed crisis respite services resulted in lowered rates of Medicaid-funded hospitalizations and health expenditures for participants compared with a comparison group. The findings suggest that peer-staffed crisis respites can achieve system-level impacts.

Caregiving Load and Respite Service Use: A Comparison between Older Caregivers and Younger Caregivers.

Study aims were to explore differences in predictors of respite care use between older (aged 65+) and younger caregivers (aged 18-64 years), and associations between caregiving load and respite care use using multivariate logistic regression analysis and unpaid caregiver (n= 10,500) data from the 2009 California Health Interview Survey. Caregiving load comprised number of care recipients, weekly hours in caregiving, and caregiving duration. Variables with a significant association with respite care for older caregivers were female gender, income, and health insurance. For younger caregivers, respite care use associations were with ethnicity, caregiving relationship, education, and availability of substitute help.

Respite Care for Single Mothers of Children with Autism Spectrum Disorders.

Single mothers of children with autism spectrum disorders are rarely studied, yet they may experience unique stressors. Researchers asked 122 single mothers to complete questionnaires concerning respite care, daily hassles/uplifts, depression, and caregiver burden. More than half (59.8%) accessed respite care, which was provided for 1 h per day, often by multiple sources (41%), such as grandparents and community agencies; most were satisfied with this care. Most mothers (77%) were at risk for clinical depression. While uplifts were negatively correlated with depression, hassles and caregiver burden were positively correlated with depression. Respite care was positively related to daily uplifts, and uplifts mediated the relationship between respite care and depression. Recommendations for researchers, policymakers, and school personnel are offered.

Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia.

OBJECTIVE: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. METHODS: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). RESULTS: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co-resident with a psychological disability. One-quarter (27.2%) of these carers reported service demand for respite care, of whom one-third had used respite services in the past three months and four-fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. CONCLUSIONS: Findings confirm significant service demand for, and under-utilisation of, respite care among mental health carers. IMPLICATIONS: Increased coverage of respite services, more flexible service delivery models matched to carers' needs and better integration with other support services are indicated.

Comparing service use and costs among adolescents with autism spectrum disorders, special needs and typical development.

Autism spectrum disorder is a complex condition that requires specialised care. Knowledge of the costs of autism spectrum disorder, especially in comparison with other conditions, may be useful to galvanise policymakers and leverage investment in education and intervention to mitigate aspects of autism spectrum disorder that negatively impact individuals with the disorder and their families. This article describes the services and associated costs for four groups of individuals: adolescents with autistic disorder, adolescents with other autism spectrum disorders, adolescents with other special educational needs and typically developing adolescents using data from a large, well-characterised cohort assessed as part of the UK Special Needs and Autism Project at the age of 12 years. Average total costs per participant over 6 months were highest in the autistic disorder group (£11,029), followed by the special educational needs group (£9268), the broader autism spectrum disorder group (£8968) and the typically developing group (£2954). Specialised day or residential schooling accounted for the vast majority of costs. In regression analysis, lower age and lower adaptive functioning were associated with higher costs in the groups with an autism spectrum disorder. Sex, ethnicity, number of International Classification of Diseases (10th revision) symptoms, autism spectrum disorder symptom scores and levels of mental health difficulties were not associated with cost.

Understanding primary carers' occupational adaptation and engagement.

BACKGROUND/AIM: Primary carers for people with intellectual disability living in remote rural areas experience high demand care commitments that may require them to be available twenty-four hours seven days a week and reduce their access to formal or respite support leaving them little time to engage in other occupations. The aim of this study was to explore the impact of caring for a person with an intellectual disability living in remote rural farming location on primary carers' occupational engagement. METHOD: A thematic analysis, using an interpretive phenomenological analysis approach, was conducted on seven in-depth semi-structured interviews of primary carers. RESULTS: Occupational adaptation and engagement, emerging as a primary theme, indicated that primary carers' occupations were affected by: limiting opportunity to develop occupations; developing new occupations; adapting occupations; and ceasing occupations. A number of influencing themes, affecting the primary carers' occupational engagement also emerged, including: lifestyle and occupational roles; wellness and health; engaging quality supports; societal and community context; and vision for the future. CONCLUSION: The results provided an initial understanding of the impact of caring on the primary carers' occupational adaptation and engagement, and a suggestion that clinicians consider using a family-centred approach as an effective and meaningful intervention.

Residential respite care is associated with family carers experiencing financial strain.

AIM: Care services for older people are provided with the expectation of supporting carers in their caregiving role. The aim of the study is to investigate the association between the utilisation of care services by older people and the caregiving experience. METHODS: Cross-sectional design, involving a cohort of family carers (n = 119) of frail older people (≥70 years) enrolled in a clinical trial of frailty treatment in metropolitan Sydney from 2008 to 2011. The caregiving experience was measured in five domains: health, daily schedule, finance, family support and self-esteem (Caregiver Reaction Assessment tool). RESULTS: Multivariate regression analysis demonstrated an association between the utilisation of residential respite care and financial strain (ß = -0.613, P = 0.049), after controlling for functional ability, co-residence and age. CONCLUSION: There is a need to consider carers' financial barriers and concerns in regards to the utilisation of respite care services.

Institutional care versus home care for the elderly in a rural area: cost comparison in rural Japan.

INTRODUCTION: The rise in institutional care costs, such as that associated with care in chronic hospitals or nursing homes, is a serious social concern in Japan, and this is particularly so in rural areas which are more rapidly aging than others. This has led to a proposal to reduce costs by deinstitutionalizing the disabled elderly. However, the actual financial benefit of deinstitutionalizing the disabled elderly is unclear. OBJECTIVE: To examine the effectiveness of deinstitutionalizing the disabled elderly with the aim of cost reduction. METHODS: This study utilized a cross-sectional design and complete census survey. The participants were 139 residents of a rural town in Hokkaido who were institutionalized as of 1 July 2007, and whose Care Needs Levels were classified according to Long-Term Care Insurance (LTCI) in Japan. Of these, 87 participants were considered candidates for deinstitutionalization. Participants who were considered unable to stay alone at home, such as those with behavioral problems, at risk of falling, or in need of hospital medical care, were excluded. Data were collected on institutional care costs, and an original questionnaire was distributed asking institutional staff about participant characteristics and physical function levels. Existing costs were collected and costs were calculated if participants were discharged from institutions to their homes. RESULTS: Approximately 20% of participants lived alone, and 80% had a severe disability. The estimated costs of discharging patients to their homes were higher than existing institutional care costs for 98% of participants. The gap in cost tended to be greater in patients with higher care needs. CONCLUSION: The deinstitutionalization of disabled elderly is not an effective measure to help reduce healthcare costs in rural areas of Japan.

Understanding and addressing the impact of autism on the family.

Children and adults with autism spectrum disorders (ASDs) have needs that challenge our systems of care. A new study estimates ASDs cost more than $126 billion each year in the U.S.--an amount that reflects both the costs of providing educational and medical services as well as the costs of not intervening early and effectively enough to prevent lifelong disability. This Issue Brief summarizes the implications of childhood autism for parental employment and earnings, and analyzes whether community-based services can reduce costly, psychiatric hospitalizations of children with ASDs.

The interplay of outpatient services and psychiatric hospitalization among Medicaid-enrolled children with autism spectrum disorders.

OBJECTIVE: To examine whether increased provision of community-based services is associated with decreased psychiatric hospitalizations among children with autism spectrum disorders (ASDs). DESIGN: Retrospective cohort study using discrete-time logistic regression to examine the association of service use in the preceding 60 days with the risk of hospitalization. SETTING: The Medicaid-reimbursed health care system in the continental United States. PARTICIPANTS: Medicaid-enrolled children with an ASD diagnosis in 2004 (N = 28 428). MAIN EXPOSURES: Use of respite care and therapeutic services, based on procedure codes. MAIN OUTCOME MEASURES: Hospitalizations associated with a diagnosis of ASD (International Classification of Diseases, 10th Revision, codes 299.0, 299.8, and 299.9). RESULTS: Each $1000 increase in spending on respite care during the preceding 60 days resulted in an 8% decrease in the odds of hospitalization in adjusted analysis. Use of therapeutic services was not associated with reduced risk of hospitalization. CONCLUSIONS: Respite care is not universally available through Medicaid. It may represent a critical type of service for supporting families in addressing challenging child behaviors. States should increase the availability of respite care for Medicaid-enrolled children with ASDs. The lack of association between therapeutic services and hospitalization raises concerns regarding the effectiveness of these services.

Access to respite breaks for families who have a relative with intellectual disabilities: a national survey.

AIMS: This paper reports the findings of a national study of the variations in the provision and correlates of respite breaks to families. Background. Internationally, respite breaks are a major support service to family carers, demand for which often exceeds supply for persons with an intellectual disability. Hence, the length of breaks available to families has to be rationed. Nurses are often involved in such decisions. METHOD: National data on the use of respite breaks by over 4000 families in a full calendar year (2008) were analysed to examine the variation within the Republic of Ireland on two indicators: namely the proportion of carers who had any access to breaks and the median number of days they had received. FINDINGS: Striking differences across health service areas were found on both indicators of usage. These were not solely attributable to the availability of provision but also reflected variations in the criteria local services used to allocate places. However, those persons with more severe disabilities were given priority, whereas carer characteristics were not a major influence. Contact with social workers and community nurses also increased the likelihood of carers receiving respite breaks. CONCLUSION: Intra-country comparisons of service delivery should assist planners in creating more equitable access to respite breaks and the development of more explicit eligibility criteria for their use. Nurses are well placed to lead on this.

Short-term residential care for dementia patients: predictors for utilization and expected quality from a family caregiver's point of view.

BACKGROUND: Short-term residential care (SRC) has proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors which influence its usage or the expectations of family caregivers regarding quality. In this paper we address the following questions: (i) which variables of the care situation, the caregivers and their attitudes act as predictors for the utilization of SRC facilities? (ii) What are the views of caregivers about the quality of SRC? METHODS: The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in four regions of Germany. With a 20% response it was possible to analyze the quantitative and qualitative data from 404 and 254 family caregivers respectively. Predictors for utilization were evaluated using binary logistic regression analysis. The answers to questions of quality were evaluated using qualitative content analysis. RESULTS: Significant predictors for the utilization of SRC are the assessment of the helpfulness of SRC and the caregiver's knowledge of the accessibility of SRC facilities. Family caregivers who had already used SRC most frequently expressed the wish for "good care" in SRC facilities, followed by a program of suitable activities for dementia patients. CONCLUSIONS: In order to increase the rate of utilization, family caregivers must be convinced of the relevant advantages of using SRC facilities. The staff should be trained in caring for dementia patients and appropriate activities should be available.

The influence of service factors on spousal caregivers' perceptions of community services.

The literature clearly denotes that spouses differ from other family members in their reactions to caregiving, their patterns of service use and their assessment of specific services. Yet, despite their prevalence as caregivers, little is known about their unique perceptions of community services and the factors that impact their experiences with the service system. The purpose of this study was to explore the relative influence of (a) spouses' personal factors (e.g., gender, family support) and (b) service factors (e.g., one-on-one professional support), on spousal caregivers' perceptions of community services. The study employed a survey design with a sample of 73 spousal caregivers caring for their partners with dementia at home. This study found that spousal caregivers have more negative perceptions of the service system when their in-home workers are not informed about their spouses' likes, dislikes and routines. This service factor was the most significant predictor of caregivers' service perceptions. The study further found that most spousal caregivers receive fewer than five consultations from a non-medical professional over a one year period. While spouses longed for more professional support, this service factor was not uniquely associated with service related stress. The policy and practice implications of these findings are discussed.

Women's views of caring for family members: use of respite care.

The purpose of this study was to describe the life situation of informal caregivers who regularly use respite services when caring for their older relative. The sample consisted of 17 wife and daughter caregivers who frequently relied on respite care to support coping at home. Data were analyzed by inductive content analysis. Spousal caregivers in a warm, loving relationship or who longed for their lost relationship with a husband experiencing a memory disorder did not identify themselves as informal caregivers, but principally as wives. Periods of respite invoked feelings of emptiness; on the other hand, they offered an opportunity for these caregivers to take care of their own health. The younger spouses also felt it was a relief to have time for their own interests. Caregivers who felt that being with the care recipient was an obligation described their relationship as mainly caregiving. In relationships focusing on organizing the daily routines, caregivers welcomed respite as a relief but experienced unexpected feelings of guilt. Those who felt imprisoned by the care recipient relied on respite to help them cope with a burdensome relationship, while waiting for their loved one's transfer into permanent institutional care. The results of the study challenge health care professionals to commit themselves to family-centered work, in which knowing the family's history and current life situation is key to providing high-quality services.

A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers.

OBJECTIVES: To review the evidence for different models of community-based respite care for frail older people and their carers, where the participant group included older people with frailty, disability, cancer or dementia. Where data permitted, subgroups of carers and care recipients, for whom respite care is particularly effective or cost-effective, were to be identified. DATA SOURCES: Major databases were searched from 1980 to March 2005. Ongoing and recently completed research databases were searched in July 2005. REVIEW METHODS: Data from relevant studies were extracted and quality assessed. The possible effects of study quality on the effectiveness data and review findings were discussed. Where sufficient clinically and statistically similar data were available, data were pooled using appropriate statistical techniques. RESULTS: Twenty-two primary studies were included. Most of the evidence came from North America, with a minority of effectiveness and economic studies based in the UK. Types of service studied included day care, host family, in-home, institutional and video respite. Effectiveness evidence suggests that the consequences of respite upon carers and care recipients are generally small, with better controlled studies finding modest benefits only for certain subgroups. However, many studies report high levels of carer satisfaction. No reliable evidence was found that respite can delay entry to residential care or that respite adversely affects care recipients. Randomisation validity in the included randomised studies was sometimes unclear. Studies reported many different outcome measures, and all of the quasi-experimental and uncontrolled studies had methodological weaknesses. The descriptions of the studies did not provide sufficient detail of the methods of data collection or analysis, and the studies failed to describe adequately the groups of study participants. In some studies, only evidence to support respite care services was presented, rather than a balanced view of the services. Only five economic evaluations of respite care services were found, all of which compared day care with usual care and only one study was undertaken in the UK. Day care tended to be associated with higher costs and either similar or a slight increase in benefits, relative to usual care. The economic evaluations were based on two randomised and three quasi-experimental studies, all of which were included in the effectiveness analysis. The majority of studies assessed health and social service use and cost, but inadequate reporting limits the potential for exploring applicability to the UK setting. No study included generic health-related quality of life measures, making cost-effectiveness comparisons with other healthcare programmes difficult. One study used sensitivity analysis to explore the robustness of the findings. CONCLUSIONS: The literature review provides some evidence that respite for carers of frail elderly people may have a small positive effect upon carers in terms of burden and mental or physical health. Carers were generally very satisfied with respite. No reliable evidence was found that respite either benefits or adversely affects care recipients, or that it delays entry to residential care. Economic evidence suggests that day care is at least as costly as usual care. Pilot studies are needed to inform full-scale studies of respite in the UK.