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PubMed2000

Is respite care available for chronically ill seniors?

OBJECTIVE: To determine family physicians' perceptions of how available respite care is and how easy it is to refer chronically ill older people to it, and to examine their opinions of respite care. DESIGN: Mailed survey to family physicians on the Thames Valley Family Practice Research Unit's mailing list. SETTING: London, Ont, and surrounding area. PARTICIPANTS: Of the 448 surveys mailed to eligible physicians, 288 were completed and returned for a response rate of 64.3%. MAIN OUTCOME MEASURES: Respondents' perceptions of how available respite care is and how easy it is to refer chronically ill older people to it and their opinions on the effectiveness of respite care. RESULTS: More than half the respondents reported that outpatient respite care is always available, but how available depended on practice location. Inpatient respite care was reported as less available. More than half the respondents found referral to respite care difficult. Respondents were very positive about the role of respite services in long-term care and in lowering caregiver stress. Respondents' perceptions varied according to where they had attended medical school. Their perceptions of respite care's role in long-term care and in helping patients remain at home were influenced by whether they thought respite care was available. CONCLUSION: Family physicians need education in the value of respite services for their chronically ill older patients and their families. Physicians also need information on the respite services available and strategies for accessing them. Our findings suggest a need for greater attention to regional discrepancies in availability of services.

Aged↗
PubMed1993

Hostel-based respite care for adolescents with developmental retardation: the need for "normalized" respite resources.

Hostel respite care for adolescents with developmental retardation is the most readily available organized support for their families. This comparison of users and non-users shows that hostel-care usage relates to some measures of family functioning rather than to qualities of the adolescent. These family measures reflect less good organization and support rather than current stress. Consumer opinion indicates that hostel care is not meeting the carers' perceived needs for relief. A greater range of "normalized" and family-orientated respite care resources might be more effective for relieving stress and providing support to improve family-based community care.

Adaptation, Psychological↗
PubMed2005

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.

Adult↗
PubMed2004

Respite care for people with dementia and their carers.

BACKGROUND: 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. OBJECTIVES: 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. SEARCH STRATEGY: 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. SELECTION CRITERIA: Randomized controlled trials comparing respite care with a control intervention for people with dementia. DATA COLLECTION AND ANALYSIS: 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. MAIN RESULTS: 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. REVIEWERS' CONCLUSIONS: 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.

Aged↗
PubMed1996

Inter-agency assessment of respite care needs of families of children with special needs in Fife.

BACKGROUND: In response to concern about the respite care provision for parents of children with special needs in Fife a survey was undertaken jointly by the Fife Regional Council social work department and education department and Fife Health Board. METHODS: A postal questionnaire survey was carried out of families of children with special needs in Fife and a retrospective case review of paediatric admission in two Fife hospitals undertaken to identify episodes of respite care in hospital. RESULTS: Results confirmed the considerable demand for additional respite services and the need for a variety of types of respite care provision to cater for the differing needs of families. The two most commonly requested services were a small homely respite care centre and holiday playschemes. The quality of services currently provided was generally considered to be good. The numbers of (usually multiply handicapped) children with a specific need for a health professional input during respite care are relatively few but nevertheless are an important group which often receive respite care inappropriately in a hospital setting. CONCLUSIONS: The results of the survey informed the interagency community care planning process and led to the developments of a Fife-wide family-based respite care scheme and a small residential facility in Kirkcaldy district. The latter is jointly funded by the Regional Council and Health Board. The Health Board will provide nursing support to the small residential service so that the needs of the few severely and multiply handicapped children can be better met. The project represents an example of successful interagency collaboration which was based on a joint commitment to assessing health and social care needs and planning services to meet these needs.

Adolescent↗
PubMedDate not supplied

Respite care: temporary relief for caregivers.

Recent respite care research is reviewed, advantages and disadvantages of respite- and home-based care are presented, and some recommendations are introduced. It may be more cost-effective to invest in caregivers' physical, financial, and emotional well-being than to provide the care required when caregivers become "patients." Practical and policy issues are raised regarding the desirability of investment in respite care.

Activities of Daily Living↗
PubMed1991

Respite care services for the family in Germany.

Development of an overall network of respite care services is progressing well in the Federal Republic of Germany. By 1990, an estimated 200 services were either in operation or about to start work throughout the country. For the most part (approximately 140) these services are run by Lebenshilfe. This service system for the care of handicapped persons, offering help in daily life for persons with handicap and their families, is therefore quite well established. This article describes the development of services for handicapped persons in the FRG, putting respite care services in this historical context. The need for, and philosophy of, respite care services are described and current efforts of the National Society, Lebenshilfe, are noted. Following a brief review of the concept of respite care and recent attempts to operationalize it in everyday practice, the article considers how the concept has evolved in response to practical experience and how it may evolve further in response to future developments.

Persons with Disabilities↗
PubMed2004

The impact on families of respite care in a children's hospice program.

With increasing trends towards home care of children with even the most complex conditions and care requirements, respite becomes critical in improving the quality of life for terminally ill children and their families. This article reports on the respite component of an evaluation project that examined the effect of the Canuck Place children's hospice program on the families it served during its first 30 months of operation. Canuck Place, located in Vancouver, British Columbia, Canada, is the first free-standing children's hospice in North America. Findings are derived from mail-out surveys to 144 families, face-to-face interviews with 18 families, and separate questionnaires specifically directed to parents who had used Canuck Place respite services. Sixty-five parents responded to the respite questions. They cited a wide range of benefits to the ill child, the child's siblings, and to the parents themselves; they also offered a few cautions. Our discussion focuses on three "lessons learned" from this unique investigation of respite within pediatric hospice care.

Activities of Daily Living↗
PubMed2003

The meaning of respite care to mothers of children with learning disabilities: two Irish case studies.

There is a growing interest in Ireland in the nature and significance of respite care for carers and those for whom they care. The relationship of individual stress with caring full time for a child who is learning disabled is well documented. Provision of respite care is seen as an important means of alleviating individual carer stress. Yet, the apparent benefits of respite care have been called into question. The present study looks at this issue within the context of respite service provision in Ireland for young people with learning disabilities. A phenomenological approach was used to explore the views of two mothers on respite care and, in particular, its personal significance for them within the context of their caring relationship for their children. The authors found that for these two mothers, whilst some of the predicted benefits of respite care were present, for example improved social activity, their use of respite care and the experience of separation initiated feelings of guilt and appeared to engender a degree of emotional stress. It is argued that providers of respite services in Ireland need to consider how they can support parents who use respite care so that they see its use as a mark of caring for their child and thereby alleviate such feelings of guilt.

Adaptation, Psychological↗
PubMed1992

Reduction of caregiver stress by respite care: a pilot study.

The purpose of this study was to determine whether providing respite care to persons with Alzheimer's disease and other dementias decreased stress and mood disturbances in caregivers. Caregivers of persons receiving respite care (n = 7), and not receiving respite care (n = 8) were tested at entry into the study and at 5 weeks and 10 weeks, using the Profile of Mood States and the Relative's Stress Scale. Using repeated measures analysis of variance, a downward trend for study subjects and an upward trend for controls was found for Relative's Stress Scores. Similar trends were found on the Personal Distress Subscale of the Relative's Stress Scale. No difference occurred in rates of institutionalization between those receiving and not receiving day care. Our study suggests that respite care for demented persons living at home significantly reduces the stress among caregivers.

Affect↗
PubMed1986

Training respite care providers for families with handicapped children: Experimental analysis and validation of an instructional package.

We conducted four experiments to evaluate a respite care training package. In Experiment 1, we assessed the effectiveness of an instructional manual on the acquisition of respite care skills and compared the relative effects of three different manual on the acquisition of respite care skills and compared the relative effects of three different manual presentation formats. Results showed that performance during simulated (role-played) respite care situations improved substantially for all six trainees following presentation of the instructional manual (with no significant differences between presentation formats) although some remedial training was necessary to achieve mastery criterion. In Experiment 2, we evaluated the effects of the manual presented as a whole with a larger group of trainees and compared it to a workshop training approach. Results showed that both the instructional manual and workshop training approaches were effective, but that the former appeared to be more cost-effective. In both experiments, correct responding generalized to a respite care situation with a multiply handicapped child. In addition, several measures of social validity were obtained. In Experiment 3, we evaluated a simplified training and assessment package that could be conducted using the resources typically available to respite care agencies, and in Experiment 4, we demonstrated that respite care agency personnel could successfully implement this program.

Journal Article↗
PubMed1989

Who benefits most from respite care?

This study examines the effect of five measures of utilization of respite care services (desire to use respite care services, actual use, accessibility, scheduling and helpfulness) upon mothers' coping resources. Using the analysis of variance between utilization measures and coping resources with the following intervening variables as covariates--mothers' self-esteem, family cohesion and adaptation, and clients' and mothers' characteristics--it was found that respite care acts as a differential service that can enhance coping resources (i.e., stress reduction skills) and is of most benefit to high self-esteem mothers of young developmentally disabled children. A home-based model was found to be the most beneficial to mothers in terms of enhanced coping resources. Findings are interpreted with respect to their implications for research, program model, planning and intervention.

Adaptation, Psychological↗
PubMed2005

Respite care for caregivers and people with severe mental illness: literature review.

AIM: The aim of this study was to review research literature over the past 10 years on respite care for people affected by severe mental illness; and identify key implications for nursing practice in provision of respite care for family caregivers of people with severe mental illness. BACKGROUND: Family caregivers play an important role in health care, but need regular breaks to maintain their own health and well-being. Respite care is one of the few services available with a primary focus on supporting family caregivers. In most developed countries the notion of respite care as an extension of the health care service has been embraced, evidenced by a growing body of literature in health and health-related disciplines. METHODS: An initial literature search was undertaken using the key words "respite", "short-term care", "shared care" and "day care" in major electronic databases for nursing, psychiatry, psychology and sociology literature between 1967 and 2002, identifying 704 articles. Closer examination of the literature from 1993 to 2002 on gaps and trends in respite care for people affected by severe mental illness was conducted. This is discussed in the context of the broader literature, particularly on dementia, where the mainstream research on respite care is found. RESULTS: The majority of family caregiving studies identified a need for greater quality, quantity, variety and flexibility in respite provision, and the literature has remained largely silent in relation to those affected by severe mental illness. There are contradictory findings on outcomes of respite care services and a lack of controlled empirical studies and evaluative research on effectiveness. CONCLUSIONS: Respite care is beneficial for caregivers, there is significant unmet need in provision of services for the mentally ill, and greater flexibility and the needs of caregivers should be recognised and addressed.

Aged↗
PubMed2000

'Time and space': carers' views about respite care.

The needs of carers have become more visible since the Carers Recognition & Service Act (1995). Although the demand for respite care is apparent it has proven much harder to establish its precise benefits using quantitative analysis. Some studies have shown no benefit at all to carers and the only clear benefit to emerge from more elaborate randomized controlled trials is a modest reduction in caregiver distress. Quantitative instruments may miss some of the benefits. We embarked on a qualitative study to determine what carers themselves said about the benefits or otherwise of respite care. Twenty-three carers were interviewed about their experiences of respite care and qualitative themes were derived from the transcripts of these semi-structured interviews. Caring was conceptualized in terms of costs (physical exhaustion, feelings of despair, lack of recognition and financial losses) and benefits (a sense of closeness to the dependant and enhanced self-esteem). Respite care emerged as a service that offered 'normality' and 'freedom' to the carer. Conversely, it was also perceived in critical terms if there was any shortfall between the quality of professional care compared to their own informal care. However high the quality of respite care, there was the uncomfortable realization by many that this care might be viewed as a signal to the patient, the family and the local community that they were no longer able to cope. Respite care was perceived as a service which, on balance, facilitated informal care and enabled care to continue at home for longer than would otherwise have been possible. The particular component of this service that was most valued was the option of a home-sitting service.

Journal Article↗
PubMed2004

The desire for support and respite care: preferences of Dutch informal caregivers.

Informal care is an indispensable element in the care for many patients. In order to maintain a sustainable input of informal care, it seems important to identify measures to alleviate the burden of care giving for caregivers at risk of burn out or other serious health problems, such as support and respite care. Thus, far research has focused on the burden of caregiving and on the supply of respite care. The demand side: what type of care is preferred by informal caregivers and what determines their preferences, is virtually unknown. We analysed the preferences and the underlying determinants for several types of support and respite care in a sample of 950 Dutch informal caregivers. Almost 80% of the respondents desire support or respite care in general, 42-47% would prefer more communication with other informal caregivers or more information of professional caregivers. Some time off is preferred by 40% of the respondents. The results show that caregiver characteristics, care recipient characteristics, elements of the caregiving situation and institutional variables determine the desire for support and respite care. Especially, the subjective burden of caregiving is important, whereas the number of caregiving tasks and the time invested (objective burden) hardly affect the desire for support and respite care.

Aged↗
PubMed1998

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.

Adult↗
PubMed1997

[Family caregivers' expectations of respite care of patients with dementia].

The aim of this study was to describe the family caregivers' expectations of the respite care of demented patients. The data was collected using structured theme interviews. The participants (n = 15) of this study were family members of patients suffering from moderate or severe dementia. The family caregivers used respite care as a mode of support either regularly or occasionally. The data was analyzed using content analysis and classified in categories based on the theoretical frame of the study. The results imply that family caregivers expect information concerning dementia, its causes as well as care possibilities. Above all the family caregivers expressed the need to know about the existing support services: domestic help, day care or respite care, voluntary nursing services etc. Also the severe need for psychological support was revealed. Family caregivers wished to have more opportunities to discuss the oppressive matters with the nursing staff. Health professionals need to know more about the family members as well as their expectations and perceptions. That enables them to intervene more effectively to ease the burden of adjustment and facilitate the continuous involvement in care.

Aged↗
PubMed1999

The effects of respite care on informal carers' well-being: a systematic review.

PURPOSE: The provision of respite care is a common method employed to reduce the burden on those who care for individuals with a chronic illness or disability. The aim of the present review was to examine research on respite provision with a view to establishing what effect it has on carers. METHOD: A literature search was conducted for studies examining the effect of respite provision on carers, 'Psyclit', 'Medline' and Social Science Citation Index computerized databases were utilized, followed by a search of the reference sections of relevant studies. RESULTS: The search yielded 29 studies, from which there was little evidence that respite intervention has either a consistent or enduring beneficial effect on carers' well-being. This may be due in part to the fact that the majority of the work conducted has been methodologically poor. Also significant, however, might be that the findings suggest respite care often fails to facilitate the maintenance of socially supportive relationships, which may moderate strain after respite has ended. CONCLUSIONS: A more 'carer-centred' approach is required in both the provision and evaluation of respite care intervention. This approach would address the experiences of both caregiver and care-recipient during the respite period.

Caregivers↗