Use Of Respite Care Research Articles

Carers’ perspectives of respite care in Australia: An evaluative study

Caring for someone with dementia is burdensome and challenging. In Australia, respite services help carers to cope with these demands. In this descriptive study, 62 carers of people with dementia provided information on their use of respite care, its effectiveness and their satisfaction with services provided during the preceding 12 months. Results indicated that carers used day centre, in-home, residential, regular outings and cottage care. The main reasons for use were to assist with managing care, take a break, or attend to health problems. Although 78% of carers rated respite as beneficial to their care recipients, most suggested areas that required attention. Improvements included the need for more time and flexibility, better quality and more permanent staff, improved communication, bureaucracy, administration and affordability. Respite providers need to recognize these limitations and develop strategies to improve the delivery of diverse respite care for carers of people with dementia.

The Interplay of Outpatient Services and Psychiatric Hospitalization Among Medicaid-Enrolled Children With Autism Spectrum Disorders

To examine whether increased provision of community-based services is associated with decreased psychiatric hospitalizations among children with autism spectrum disorders (ASDs). 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. The Medicaid-reimbursed health care system in the continental United States. Medicaid-enrolled children with an ASD diagnosis in 2004 (N = 28 428). Use of respite care and therapeutic services, based on procedure codes. Hospitalizations associated with a diagnosis of ASD (International Classification of Diseases, 10th Revision, codes 299.0, 299.8, and 299.9). 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. 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.

Impact of home and community-based services on hospitalisation and institutionalisation among individuals eligible for long-term care insurance in Japan

BackgroundThis population-based retrospective cohort study aimed to clarify the impact of home and community-based services on the hospitalisation and institutionalisation of individuals certified as eligible for long-term care insurance (LTCI) benefits.MethodsHealth insurance data and LTCI data were combined into a database of 1,020 individuals in two farming communities in Hokkaido who were enrolled in Citizen's Health Insurance. They had not received long-term care services prior to April 1, 2000 and were newly certified as eligible for Long-Term Care Insurance benefits between April 1, 2000 and February 29, 2008. The analysis covered 565 subjects who had not been hospitalised or institutionalised at the time of first certification of LTCI benefits. The adjusted hazard ratios (HRs) of hospitalisation or institutionalisation or death after the initial certification were calculated using the Cox proportional hazard model. The predictors were age, sex, eligibility level, area of residence, income, year of initial certification and average monthly outpatient medical expenditures, in addition to average monthly total home and community-based services expenditures (analysis 1), the use or no use of each type of service (analysis 2), and average monthly expenditures for home-visit and day-care types of services, the use or no use of respite care, and the use or no use of rental services for assistive devices (analysis 3).ResultsUsers of home and community-based services were less likely than non-users to be hospitalised or institutionalised. Among the types of services, users of respite care (HR: 0.71, 95% confidence interval [CI]: 0.55-0.93) and rental services for assistive devices (HR: 0.70, 95% CI: 0.54-0.92) were less likely to be hospitalised or institutionalised than non-users. For those with relatively light needs, users of day care were also less likely to be hospitalised or institutionalized than non-users (HR: 0.77, 95% CI: 0.61-0.98).ConclusionsRespite care, rental services for assistive devices and day care are effective in preventing hospitalisation and institutionalisation. Our results suggest that home and community-based services contribute to the goal of the LTCI system of encouraging individuals certified as needing long-term care to live independently at home for as long as possible.

Carers of adults with mental illness: Comparison of respite care users and non-users

The aim of this study was to investigate the rate, type and duration of respite care use in carers of an adult with mental illness, and the differences between respite care users and non-users on demographic, caregiving context and adjustment variables. A total of 106 carers completed a postal survey questionnaire. The majority (76%) of carers who accessed care used it weekly, fortnightly or monthly. The most common types of respite services were in-home, day programs, and residential respite. The mean duration of respite care periods was 58.18 hr each time respite was used. Compared to respite care non-users, carers who accessed respite care were more likely to live with their care-recipient and provide more caregiving. They also reported more benefits associated with their caregiving. Findings suggest that respite care services need to be varied, available for carers on a weekly to monthly basis with a range in duration, but catering for higher use of 2-day respite periods. Carers who are highly engaged in a range of caregiving tasks and who live with their care recipient are more likely to have a greater need for respite care. Future research should examine the effects of a range of respite care factors on carer adjustment outcomes.

Pilot investigation of the effectiveness of respite care for carers of an adult with mental illness

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.

Ethnic variation in service utilisation among children with intellectual disability

This study examined whether service utilisation among children with intellectual disability (ID) varied by ethnic cultural group. Survey carried out in four special schools in London. Information was provided by school teachers using case files, and 242 children aged 7 to 17 years with mild and moderate ID were identified. Ethnic categories were derived from self-reported main categories. Service utilisation categorised as use of: child and adolescent mental health services (CAMHS), social services, physical health and education services. Child and adolescent mental health services uptake was lower for South Asians than for White British (P = 0.0487). There were statistically significant differences among ethnic groups for community-based social services uptake (being the highest for the Black groups and the lowest for South Asians, P = 0.015) and respite care uptake (being the highest for the Black and White European groups and the lowest for South Asians, P = 0.009). In regression analysis family structure predicted CAMHS service utilisation and social service community support. Ethnicity predicted use of respite care. Significant ethnic differences in service utilisation among children with ID were found for both CAMHS and social service contact. There was particularly low service use for the South Asian group. These differences might arise because of differences in family organisation, as more South Asian children lived in two-parent families, which may have been better able to provide care than single-parent families. Other factors such as variation in parental belief systems and variation in psychopathology may be relevant. Implications are discussed.

Systematic review of respite care in the frail elderly

To assess the effectiveness and cost-effectiveness of breaks in care in improving the well-being of informal carers of frail and disabled older people living in the community and to identify carer needs and barriers to uptake of respite services. Major electronic databases were searched from the earliest possible date to April 2008. Selected studies were assessed and subjected to extraction of numerical data for meta-analysis of quantitative studies and extraction of text for thematic analysis of qualitative studies. Quality of the studies was assessed using checklists specifically designed for the current review. In total, 104 papers were identified for inclusion in the quantitative synthesis, 16 of which were appropriate for meta-analysis. Carer burden was reduced at 2-6 months' follow-up in single-sample studies but not in randomised controlled trials (RCTs) and quasi-experimental studies. Depression was reduced in RCTs in the short term and for home care but not for day care. These effects, however, were not significant in random-effects models. There was a trend for longer interventions to have more positive effects than shorter interventions. There was no effect of respite on anxiety, but it had positive effects on morale and anger and hostility. Single-group studies suggested that quality of life was worse after respite use. There were increased rates of institutionalisation after respite use; however, this does not establish a causal relationship as it may be a result of respite being provided late in the caregiving career. A total of 70 papers were identified for inclusion in the qualitative synthesis. Uptake of respite care was influenced by: carer attitudes to caring and respite provision; the caregiving relationship; knowledge of, and availability of, services; the acceptability to, and impact of respite care on, care recipients; hassles resulting from the use of respite care; quality of respite care; and the appropriateness and flexibility of service provision. Carers expressed needs for active information provision about services, support offered early in the caregiving career, access to a variety of services with flexible provision, reliable transport services, continuity of care, good-quality care, appropriate environments, care that provides benefits for care recipients (socialisation and stimulation), and appropriate activities for care recipients' levels of abilities and interests. There was some evidence to support respite having a positive effect on carers but the evidence was limited and weak. It is difficult, therefore, to make recommendations as to the most appropriate form of delivery of respite, apart from the suggestion that a range of services is probably most appropriate, to provide flexibility of respite provision and responsiveness to carer and care recipient characteristics and needs and also changes in those needs over time. There is a need for further high-quality larger trials that include economic evaluations.

Willingness to use respite care among family caregivers in Northern Taiwan

Investigate the use of respite care among family caregivers and examine factors related to their willingness to use such care. Respite care is a pivotal service for supporting family caregivers. Although research related to respite care is not a new field in western societies, such studies have rarely been done for Asian populations. A cross-sectional study. The study was conducted using a convenience sample of 100 family caregivers obtained through four home health care agencies in Northern Taiwan. Structured face-to face interviews were conducted in home settings. Caregivers were divided into a willingness group and a non-willingness group. The quantitative data were analysed using t-test, chi-square and multiple logistic regression. Sixty-five per cent of the caregivers interviewed did not know about respite care services. The prevalence of respite care use was 11%. Eighty-nine per cent of the caregivers had never used respite care: 60.7% of them reported that they would never use it and 39.3% of the caregivers indicated that they were willing to use respite care in the future. This study showed that willingness to use respite care was higher when the respite services matched the needs of the caregivers as well as the caregivers perceived higher caregiving burden. These results suggest that respite care services should be explained more explicitly to family caregivers. Also, any respite care plan must consider the family caregivers burden, both perceived and realistically. The willingness to use respite care is a culturally sensitive issue. Health care providers must act as advocates to improve respite care policy. They must ensure that respite care fits caregivers' needs and they must help caregivers overcome the social or cultural barriers to respite care.

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.

Care for a break? An investigation of informal caregivers’ attitudes toward respite care using Q-methodology

Objective To investigate informal caregivers’ attitudes toward respite care. Method Interviews with informal caregivers during open-house support groups (three) for informal caregivers, conducted late 2004 at Informal Care Support Centres in the city of Rotterdam, The Netherlands. A Q-methodological study was conducted. Informal caregivers were asked to rank-order 39 statements regarding motivation for providing informal care; supporting capacity; physical, psychological, practical, financial, relational and social obstacles; subjective burden; need for support; experienced support; and propensity and impediments to make use of respite care. In addition, respondents explained their Q-sort in writing and completed a questionnaire regarding characteristics of the caregiver, the care recipient, and the objective and subjective burden of their care giving situation. Individual Q-sorts were analysed using PQMethod 2.11 (statistical method factor analysis with a varimax rotation). Objective of Q-analysis was to reveal a limited number of corresponding ways the statements were sorted. For the factors identified, composite sorts were determined. Factors were interpreted and described using the composite sorts, differences and similarities in rank value of statements between factors and the explanations by respondents. Results We found three distinct groups of caregivers: informal caregivers who need and ask for respite care, those who need but won’ t ask for respite care, and those that do not need respite care. Caregivers in the first two groups experience substantial burden, while those in the third group enjoy sufficient support and appear to manage pretty well. Caregivers in the second and third group derive considerable satisfaction from care giving. On balance, caregivers in the first two groups would sometimes rather have someone else take over their task. The first group feels misunderstood and undervalued by health and welfare organisations and has problems obtaining respite. The desire for respite of caregivers in the second group is not unambiguous, affected by care recipient resistance against respite. Conclusions Respite care programmes should target caregivers in the first two groups. Regarding the second group, effort should be directed to both caregiver and care recipient. They need to be convinced that it is in their mutual interest to make the care giving task manageable in the long run, because they report serious burden from care giving coupled with a resistance to respite care.

Use of respite care and coping strategies among Irish families of children with intellectual disabilities1

Accessible summary This research was done in Ireland with carers of children with learning disability. The researchers wanted to learn more about how carers cope and why carers use respite care. This research found that: This research will help service providers to plan and run respite care to suit families better. Other researchers will understand more about how male and female carers cope. SummaryThe study aimed to identify patterns of respite use and coping strategies among family caregivers in a region of Ireland. Firstly, we asked what child and family characteristics were associated with use of respite care. Secondly, we explored coping strategies reported by family carers. The study was undertaken with a view to informing respite service provision and redressing a gap in the literature on family caregiving. Findings differed from former research by suggesting that the likelihood of families using respite care was not significantly related to presence of challenging behaviours or level of support required by children. Additionally, likelihood of using respite care was not significantly related to family size and social support. Female carers tended to use more ‘problem solving’ strategies than males. Male carers tended to use more ‘managing meaning’ coping strategies than females, although some strategies were shared across genders. The need for carers to have confirmation of high standards of care and the importance of supporting male carers was discussed. Study limitations and implications for service provision and research were explored.

Respite care—An explorative study of demand and use in Dutch informal caregivers

Recently, there has been increasing concern for the well-being of informal caregivers. Attention is directed at the development of respite care programs that provide support and relief by (temporarily) easing the burden for the caregiver. Yet, little is known about caregivers’ needs, desires and use of respite care facilities. A survey was conducted among a population of informal caregivers, to investigate demand for and use of the four most common types of respite care, namely in-home respite care, day-care, short-stay and special holiday arrangements. The 273 caregivers that participated in this study were reasonably well informed about existing services, especially out-of-home services; least informed was a subgroup that needs but currently does not make use of respite. About one-third of caregivers made use of respite care. These caregivers experienced substantial burden and expected burden (60.7 on a 0–100 scale) to increase substantially in case respite care would no longer be available (+31 on a 0–100 scale). Caregivers and care recipients were generally satisfied with the respite care they receive. About half of the non-users indicated to need or desire respite care, in general those non-users experiencing a relatively high burden. The main impeding factor for use of respite care was care recipient resistance against respite (38%). A majority of carers (62%) anticipated that respite care could substantially decrease their subjective burden (−29 on a 0–100 scale). Mostly respite care facilities reach the caregivers most in need of support, but not all caregivers in need make use of respite. Improvements are possible in terms of information provision and focus on combined caregiver–care recipient needs and desires. More research is needed into the (cost-)effectiveness of respite care.

Respite care for people with dementia and their carers.

Caring for someone with dementia can be emotionally and physically demanding. Respite care is any intervention designed to give rest or relief to caregivers. It is not clear what positive and negative effects the provision of respite care may have on people with dementia and their caregivers. To assess the effects of respite care for people with dementia and their caregivers, in particular the effect of respite care on rates of institutionalization. The trials were identified from a last updated search of the Cochrane Dementia and Cognitive Improvement Group's Specialized Register on 2 July 2003 using the terms respite* and "day care". This Register contains up to date records from all major health care databases and many ongoing trial databases. Randomized controlled trials comparing respite care with a control intervention for people with dementia. Both reviewers carried out study selection independently and reached a consensus through discussion. Data was extracted by a single reviewer. The reviewers contacted all investigators for methodological details not reported in the text and for additional data. Three trials were included in the review. They were different in many ways including intervention, duration and outcomes so pooling of data was not possible. Re-analysis of outcomes using data from the published studies found no significant effects of respite care on any variable. Current evidence does not demonstrate any benefits or adverse effects from the use of respite care for people with dementia or their caregivers. These results should be treated with caution, however, as they may reflect the lack of high quality research in this area rather than an actual lack of benefit. Given the frequency with which respite care is advocated and provided, well-designed trials in this area are needed.

Carers' expressed emotion, appraisal of behavioural problems and stress in children attending schools for learning disabilities.

Expressed emotion (EE) has been found to be high in families with children suffering from conduct disorder as well as a variety of childhood psychiatric disorders. Expressed emotion has been associated with high levels of stress in carers. However, behavioural problems in children do not automatically lead to stress in carers. Carers' beliefs and behaviour could affect how they appraise and cope with their child's behaviour. Furthermore, the perceived adequacy of social support can also be an important factor in determining the family's level of stress. The study investigates the relationship between EE variables and carers' appraisal and coping with the child's behaviour, stress and social support. Forty-seven carers were recruited from schools for moderate to severe learning disabilities. Carers filled in questionnaires and took part in the Camberwell Family Interview for EE status. Carers' EE status was determined by a rater blind to the carers' questionnaires scores. There was no difference between high and low EE groups in the descriptive information of the child's independence, communication skills, or the frequency of behavioural problems. However, high EE carers appraised more of their children's behaviour as definite problems and their available social support to be less adequate. High warmth was found to relate to more positive reappraisal and less escape-avoidance coping. A multiple regression analysis indicated that carers' EE, psychological well-being, appraisal of their children's behaviour, their children's communication skills and respite usage predicted 62% of the variance in their perceived stress scores. It is important to consider optimal use of respite care and psychosocial intervention to encourage positive appraisal and problem solving.

Negotiating dyadic identity between caregivers and care receivers.

To describe the ways in which caregivers (CGs) and their care receivers (CRs) negotiate the dyadic rules that influence how the care experience "fits into" their lives and to suggest theory based on the data. This qualitative study was part of a larger, NIH-funded study of 60 care dyads and their use of respite care in the Midwestern United States. The sample for this analysis included 60 informal CGs and CRs in their home settings. Data collection for the larger study began in 1994 and continued through 1998. CGs and CRs were interviewed in their homes with one researcher interviewing the CG regarding the care experience while another researcher interviewed the CR. Qualitative content analysis was used to analyze the data. The theory of CG and CR dyadic identity development, formulated in this study, indicates that a mutually agreed-upon care dyadic identity is developed when both parties negotiate a set of rules about their conduct together in the caregiving and care receiving relationship. Failure to agree on these dyadic rules may result in strain in the care process. Three archetypes of dyadic relationships were identified, based on the degree of immersion into a dyadic identity: (a) complete and mutually accepted immersion of an identity into the care process by both parties, (b) retention of personal identities while also accepting the caregiving or care-receiving roles, and (c) rejection of the roles by one or both parties. Negotiation was important in these dyadic care relationships, and thus attention to assisting CGs and CRs to develop negotiation skills is needed. More research is needed to substantiate and expand this theory of CG and CR dyadic identity development, and to examine linkages between negotiated processes and outcomes.

The Epidemic of Alzheimer??s Disease

Alzheimer's disease is one of several diseases of the elderly that has recently come into prominence for a number of reasons. First, its prevalence is set to increase as a result of the aging of Western populations. Secondly, the use of institutional care has fallen as a result of major policy changes in many countries, and this has caused a shift in the pattern of care for the elderly. Finally, the advent of innovative pharmacotherapy has caused third-party payers and clinicians to question the way in which this disease is best managed. International epidemiological data for Western populations point to a potentially considerable increase in the prevalence of the disease over the next 2 decades. Although the cost estimates of the disease vary widely among, or indeed, within different Western countries, they may be considerable. It is clear that innovative strategies, e.g. the use of respite care, sheltered housing and pharmacotherapy, might serve to limit the amount of time patients spend in institutional care. Even a small reduction in this form of care might be sufficient to offset the costs of treatment. What is lacking today are clear demonstrations as to how these new strategies might contribute to the overall management of this complex and multifactorial disease: this should be the joint focus of care providers and the pharmaceutical industry in the near future.

A Review of Child and Family Characteristics Related to the Use of Respite Care in Developmental Disability Services

This article reviews the literature on child and family characteristics that influence the use of respite care among families who have a child with a developmental disability. On the child side, these characteristics include severity of disability, level of required care, presence of challenging behaviors, and communication difficulties. On the family side, relevant factors include level of family stress, access to support systems, and family size. In some cases, marital status may also influence the decision of a parent to make use of respite care. Knowledge of these factors would seem crucial for effective planning and organization of respite care.

Institutional respite care: breaking chores or breaking social bonds?

This article addresses the question of why respite care is evaluated positively by caregivers, yet is often not used by those considered to be in need of the service. Data from interviews with 144 caregivers in Canberra, Australia, are the basis for examining the relationships between five appraisal dimensions and respite care usage, both in the past and in the future. These data show that use of respite care is higher when the task demands of caregiving are high and when caregivers and care receivers are bound together in dysfunctional caregiving relationships. The factor that is most likely to reduce the likelihood that respite care will be used in the future when past use is controlled is the caregiver's appraisal of an intimate and loving relationship between caregiver and care receiver.

Understanding Respite Care Use by Families of Children Receiving Short-Term, In-Home Psychiatric Emergency Services

Respite care is widely believed to be an important support service for families raising a child with a disability. We report the findings of a respite care utilization study conducted within the context of a larger research and demonstration project examining three models of intensive, in-home services for children experiencing psychiatric crises. Respite care, both in-home and out-of-home, was a support service available to families in two of the three study conditions. Overall, 34% of 146 eligible families used in-home and or out-of-home respite care. Utilization was lower than the estimates developed prior to implementation, prompting an inquiry at the end of the first project year designed to maximize use and to gather more information on caregiver and service provider attitudes toward respite care. The inquiry included caregiver and provider focus groups, surveys, and enhanced data collection and analysis. Caregiver interviews indicated that many families did not fully understand what it meant to receive respite care or even that it was available to them. A comparative analysis of respite care users and non-users revealed that respite care users were more likely to have younger children, children who had a greater number of assessed functional impairments, and fewer social supports. Respite care users also reported greater difficulty managing their children's difficult behaviors.

Measuring outcomes in family support services (a case study using respite care)

Measuring outcomes in family support services is a relatively new area of social research. This study aimed to explore the use of respite care (brief planned periods away from home with the same carers over several months) as a family support service to help prevent long term family breakdown. It studied the service from the perspectives of all those involved in it—social workers, carers, parents and children–and was funded by the UK Department of Health as part of a series of studies commissioned to explore the implementation of the English Children Act law and theory.