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Current Oncology Reports Feb 2021The definition of respite care remains unclear and its purpose and effectiveness are unproven till date. This paper reviews the current evidence regarding definition and... (Review)
Review
PURPOSE OF THE REVIEW
The definition of respite care remains unclear and its purpose and effectiveness are unproven till date. This paper reviews the current evidence regarding definition and efficacy of respite care, as well as the different programs, models, and interventions employed to deliver the same.
RECENT FINDINGS
A scoping search identified the relevant literature to be included in the review. The current evidence reiterates the lack of clarity in defining and delineating the purpose of respite care. Recent empirical evidence supports the effectiveness of respite care with clear benefits for the carers, patients, their families, and the healthcare system. Along with inpatient, home, and hospice care, respite care is considered as an essential component of palliative care. Evidence, although weak, supports the efficacy of respite care. High-quality studies with clear outlining of the scope of the services and resolution of ambiguities pertaining to its definition are warranted to fill the gaps in knowledge.
Topics: Caregivers; Home Care Services; Humans; Palliative Care; Respite Care
PubMed: 33559761
DOI: 10.1007/s11912-021-01015-z -
Journal of Hospice and Palliative... Aug 2022Families 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,... (Review)
Review
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.
Topics: Child; Eligibility Determination; Humans; Medicaid; Respite Care; United States
PubMed: 35470307
DOI: 10.1097/NJH.0000000000000867 -
The Cochrane Database of Systematic... Jan 2014Caring 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... (Review)
Review
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 such care may have on them, or on people with dementia.
OBJECTIVES
To assess the benefits and harms of respite care for people with dementia and their caregivers, in particular the effect of respite care on rates of institutionalisation.
SEARCH METHODS
The trials were identified from a search of ALOIS, the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group, using the terms respite* OR daycare OR caregiver* relief. ALOIS contains up-to-date records from all major healthcare databases and many ongoing trial databases.
SELECTION CRITERIA
Randomised controlled trials comparing respite care with a control intervention for people with dementia.
DATA COLLECTION AND ANALYSIS
Two review authors carried out study selection independently and reached a consensus through discussion. Data were extracted by a single review author. The review authors contacted all investigators for methodological details not reported in the text and for additional data for three studies included in the previous version of the review.
MAIN RESULTS
Four trials are now included in the review, with 753 participants. They were different in many ways including the intervention, duration, outcomes and control group so pooling of data was not possible. Overall, the quality of the evidence was rated as very low. Re-analysis of outcomes using data from the published studies found no significant effects of respite care compared to no respite care on any caregiver variable. When respite care was compared to polarity therapy a significant effect was found in favour of polarity therapy for caregiver perceived stress (n = 38, MD 5.80, 95% CI 1.43 to 10.17), but not for other measures of psychological health and other caregiver outcomes. No studies reported evaluable data on outcomes related to the people with dementia.
AUTHORS' 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 are needed in this area.
Topics: Aged; Caregivers; Dementia; Humans; Randomized Controlled Trials as Topic; Respite Care; Stress, Psychological; Therapeutic Touch
PubMed: 24435941
DOI: 10.1002/14651858.CD004396.pub3 -
BMJ (Clinical Research Ed.) Jan 1993
Topics: Community Health Services; Humans; Respite Care; United Kingdom
PubMed: 8443477
DOI: 10.1136/bmj.306.6871.160 -
Nursing Forum Jul 2017The aim of this article is to analyze the concept of respite care in the context of caring for a child with special healthcare needs. (Review)
Review
AIM
The aim of this article is to analyze the concept of respite care in the context of caring for a child with special healthcare needs.
BACKGROUND
Respite care has often been identified as an important resource for caregivers of children with special healthcare needs. It can help provide a break from the constant demands of caregiving.
DESIGN
A concept analysis was conducted using an evolutionary approach.
DATA SOURCE
The data source for the concept analysis was a review of literature addressing respite care for caregivers of children with special healthcare needs.
REVIEW METHODS
A review of the literature was conducted and a concept model was developed using an evolutionary approach.
RESULTS
A theoretical definition of respite care is provided and the defining attributes, related concepts, antecedents, and consequences of respite care are shown in a diagram of the concept of respite care.
CONCLUSIONS
The conceptual model provides a framework to help nurses better understand the concept of respite care in order to educate caregivers, provide appropriate referrals, serve as providers of respite care, and advocate for policy changes related to the provision of respite care services for caregivers of children with special healthcare needs.
Topics: Caregivers; Child; Disabled Children; Female; Humans; Male; Models, Nursing; Nursing Theory; Parents; Respite Care
PubMed: 27438939
DOI: 10.1111/nuf.12179 -
Journal of Pediatric Nursing 2016While parenting, in general, can be stressful, mothers of children with autism spectrum disorder (ASD) experience chronic stress comparable to combat soldiers. Research... (Review)
Review
UNLABELLED
While parenting, in general, can be stressful, mothers of children with autism spectrum disorder (ASD) experience chronic stress comparable to combat soldiers. Research suggests that respite care may potentially reduce stress among caregivers. However, greater understanding of this relationship is needed. The purpose of this integrative review is to examine the relationship between respite care and stress among caregivers of children with ASD.
SAMPLE AND ELIGIBILITY
A final sample of 11 primary research reports were located using several databases. Articles were included that were: related to the focus of the review, written in English, and published within the last 10 years.
RESULTS AND CONCLUSION
While most studies found that respite care was associated with lower stress, several found that respite care was associated with higher stress. One study found no association. A model is presented that contributes to a new understanding of this relationship. Overall, the results of this integrative review provide some evidence that respite care use may be associated with a decrease in stress among caregivers of children with ASD. However, due to the lack of consistency and quality across the studies, these findings must be interpreted with caution.
IMPLICATIONS
Healthcare providers must recognize the importance of tailoring respite care services to the unique family needs. Additionally, policy changes and innovative ideas are needed to help improve the quality of respite care and help expand access. Finally, additional research is necessary to better understand the relationship between respite care and stress among caregivers of children with ASD.
Topics: Autism Spectrum Disorder; Caregivers; Child; Depression; Female; Humans; Male; Mental Health; Parents; Resilience, Psychological; Respite Care; Risk Factors
PubMed: 27592275
DOI: 10.1016/j.pedn.2016.07.009 -
Gerontology 2022With the lack of respite care, caregivers will often suffer from physical, mental, and financial hardships. In the Middle East and North African countries, religion and... (Review)
Review
With the lack of respite care, caregivers will often suffer from physical, mental, and financial hardships. In the Middle East and North African countries, religion and cultural considerations may pull in opposite directions as a vast majority of families in the region care for their loved ones at home. Moreover, the sense of responsibility and obligations toward caring for an older family member also influences caregivers' decision-making, even though such considerations may deprive them of even a short vacation or break. It is important for policymakers and stakeholders, in close participation with families and older adults receiving care, to take into account how various factors related to social, cultural, and religious matters affect quality of care and the well-being of care recipients and caregivers. Official policies could have an essential role in opening new avenues for temporary respite care, but authorities should be aware of the importance of cultural and religious principles while setting up such policies. Therefore, policymakers should engage with the relevant organizations, such as municipalities, nongovernmental organizations, charities, and religious institutions, to help the health system in establishing respite care facilities. In this article, we discuss a number of key issues and provide suggestions as to how this goal might be achieved. The availability of respite services could have a positive influence on the physical and mental health of both older adults in need of care and informal caregivers. In conclusion, those receiving care, caregivers, and the public health-care system will gain from the development of a range of respite care services.
Topics: Africa, Northern; Aged; Caregivers; Data Collection; Family; Humans; Respite Care
PubMed: 33915539
DOI: 10.1159/000515160 -
The Cochrane Database of Systematic... 2004Caring 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... (Review)
Review
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.
Topics: Aged; Caregivers; Dementia; Humans; Respite Care
PubMed: 15106250
DOI: 10.1002/14651858.CD004396.pub2 -
Journal of Advanced Nursing Feb 2005The 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... (Review)
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.
Topics: Aged; Caregivers; Clinical Nursing Research; Dementia; Home Nursing; Humans; Mental Disorders; Psychiatric Nursing; Respite Care
PubMed: 15660554
DOI: 10.1111/j.1365-2648.2004.03287.x -
Palliative Medicine Oct 2003Family caregivers, who are patients' relatives and friends (hereafter called carers), play a significant and arguably most important role in enabling patients to make... (Review)
Review
Family caregivers, who are patients' relatives and friends (hereafter called carers), play a significant and arguably most important role in enabling patients to make choices about their place of care during advanced disease and in the terminal phase. Relatively little attention has been directed towards identifying the needs of carers who find themselves in this position and what interventions (if any) might best support them in continuing to provide care to the patient during the illness and dying trajectory. What evidence there is suggests that while some aspects of caring are looked on positively, carers also experience challenges in maintaining their physical and psychological health and their social and financial wellbeing. One common recommendation is that respite facilities be provided. The purpose of this paper is to consider the definitions and assumptions that underpin the term 'respite' and its impact on the physical, psychological and social outcomes of carers in palliative care contexts. We conducted a review of the literature, which involved searching five electronic databases: Web of Science, Medline, CINHAHL, Cochrane Database System Review and Social Sciences Citation Index. The search identified 260 papers, of which 28 related directly to adult respite care in specialist palliative care. These papers were largely concerned with descriptive accounts of respite programmes, guidance on referral criteria to respite services or were evaluating the effects of respite on the patient rather than the impact on the carer. We did not identify any empirical studies assessing the effects of respite provided by specialist palliative care services on carer outcomes. There is insufficient evidence to draw conclusions about the efficacy of offering respite care to support carers of patients with advanced disease. We, therefore, draw on the wider literature on carers of adults with chronic disease to consider the impact of respite services and offer suggestions for further research.
Topics: Adult; Caregivers; Chronic Disease; Day Care, Medical; Hospice Care; Humans; Palliative Care; Respite Care; Stress, Psychological
PubMed: 14594147
DOI: 10.1191/0269216303pm803ra