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American Family Physician Jun 2019Eighty percent of adults requiring long-term care currently live at home in the community, and unpaid family caregivers provide 90% of their care. Family caregivers...
Eighty percent of adults requiring long-term care currently live at home in the community, and unpaid family caregivers provide 90% of their care. Family caregivers serve as a critical extension of the U.S. health care system, and the demand for family caregivers is expected to increase during the next few decades. Caring for loved ones is associated with several benefits, including personal fulfillment; however, caregiving is also associated with physical, psychological, and financial burdens. Family physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments-interviews directed at identifying high levels of burden-as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of the caregiver or the care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local elder care agencies, websites, and respite care. Psychoeducation, skills training, and therapeutic counseling interventions for caregivers have shown small to moderate success by decreasing caregiver burden and increasing caregiver quality of life. Additional research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Support and anticipatory guidance for the caregiver is especially helpful during care transitions and at the care recipient's end of life.
Topics: Adult; Aged; Caregivers; Cost of Illness; Family; Female; Humans; Long-Term Care; Male; Middle Aged; Social Support; Stress, Psychological
PubMed: 31150177
DOI: No ID Found -
Annual Review of Psychology Jan 2020Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews... (Review)
Review
Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers. The impact of caregiving is highly variable, driven largely by the intensity of care provided and the suffering of the care recipient. The intervention literature is littered with many failures and some successes. Successful interventions address both the pragmatics of care and the emotional toll of caregiving. We conclude with both research and policy recommendations that address a national agenda for caregiving.
Topics: Aging; Caregivers; Exercise Therapy; Family; Humans; Psychotherapy; Respite Care; Stress, Psychological
PubMed: 31905111
DOI: 10.1146/annurev-psych-010419-050754 -
Journal of Autism and Developmental... Jul 2019Autism is associated with a range of costs. This paper reviews the literature on estimating the economic costs of autism spectrum disorder (ASD). More or less 50 papers... (Review)
Review
Autism is associated with a range of costs. This paper reviews the literature on estimating the economic costs of autism spectrum disorder (ASD). More or less 50 papers covering multiple countries (US, UK, Australia, Canada, Sweden, the Netherlands, etc.) were analysed. Six types of costs are discussed in depth: (i) medical and healthcare service costs, (ii) therapeutic costs, (iii) (special) education costs, (iv) costs of production loss for adults with ASD, (v) costs of informal care and lost productivity for family/caregivers, and (vi) costs of accommodation, respite care, and out-of-pocket expenses. A general finding is that individuals with ASD and families with children with ASD have higher costs. Education costs appear to be a major cost component for parents with children with ASD.
Topics: Adult; Australia; Autism Spectrum Disorder; Autistic Disorder; Canada; Caregivers; Child; Education, Special; Female; Health Expenditures; Humans; Male; Netherlands; Parents; Respite Care; Sweden
PubMed: 30976961
DOI: 10.1007/s10803-019-04014-z -
BMJ Supportive & Palliative Care Dec 2019Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services... (Review)
Review
BACKGROUND
Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the parents' perspectives of unmet needs.
AIM
To identify what published evidence is available on the unmet needs of children with life-limiting conditions and their families, from the perspective of parents, internationally. ELIGIBILITY CRITERIA: : papers from the perspective of parents of children aged 0-19 years, who have a life-limiting condition and are receiving palliative care. : those papers not written in English, not reporting primary research and discussing children who died from stillbirth, accidental or unexpected circumstance.
CHARTING METHODS
A scoping review was conducted in accordance with the methods of Arksey and O'Malley.
SOURCES OF EVIDENCE
The electronic databases PubMed, MEDLINE, CINAHL and PsycINFO were searched. Key terms included: parent, needs, met/unmet/satisfaction, palliative/supportive/end of life care, life-limiting/life-threatening illness, infants/children/young people.
RESULTS
Total hit indicated 5975 papers for screening. Fifty-five papers met the scoping review criteria. The majority used mixed-methods approaches inclusive of: questionnaires, self-report measures, in-depth interviews, focus groups, case record analysis and art-based workshops. Unmet needs included: respite care, coordination and organisation of care, psychological support and professional communication skills.
CONCLUSIONS
The findings suggest many unmet needs from the parent's perspective, across several aspects of the Quality Standards and Children's Palliative Care Frameworks. Further research is needed which explores the parent's unmet needs in palliative care services.
Topics: Adolescent; Adult; Child; Child, Preschool; Health Services Needs and Demand; Hospice Care; Humans; Infant; Infant, Newborn; Palliative Care; Parents; Pediatrics
PubMed: 31324615
DOI: 10.1136/bmjspcare-2018-001705 -
Multifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers.Journal of the American Geriatrics... Feb 2019To examine factors associated with caregiver burden from a multifactorial perspective by examining caregiver and care recipient characteristics and a full range of...
OBJECTIVES
To examine factors associated with caregiver burden from a multifactorial perspective by examining caregiver and care recipient characteristics and a full range of caregiving tasks.
DESIGN
Nationally representative surveys of community-dwelling older adults and their family caregivers residing in the United States.
SETTING
2011 National Health and Aging Trends Study and National Study of Caregiving.
PARTICIPANTS
Community-dwelling older adults and their family caregivers.
MEASUREMENTS
Caregiver burden, comprising emotional, physical, and financial difficulties associated with caregiving.
RESULTS
An estimated 14.9 million caregivers assisted 7.6 million care recipients. More than half of caregivers reported burden related to caregiving. In a multivariable regression model, caregivers who assisted with more activities of daily living and instrumental activities of daily living, health management tasks, and health system logistics were more likely to experience burden, as were female caregivers, adult child caregivers, caregivers in poor health, caregivers with anxiety symptoms, and those using respite care. Dementia was the only care recipient characteristic associated with burden.
CONCLUSION
Caregiver characteristics and provision of caregiving tasks determine caregiver burden more than care recipient characteristics. Absence of an association between type of a care recipient's chronic conditions and burden, except for dementia, suggests that the tasks that caregivers who assist older adults with a variety of health conditions undertake shape the experience of caregiving. J Am Geriatr Soc 67:277-283, 2019.
Topics: Activities of Daily Living; Adult Children; Aged; Aged, 80 and over; Caregivers; Chronic Disease; Compensation and Redress; Cost of Illness; Dementia; Female; Humans; Independent Living; Male; Regression Analysis; United States
PubMed: 30452088
DOI: 10.1111/jgs.15664 -
Geriatric Nursing (New York, N.Y.) 2019
Topics: Burnout, Psychological; Caregivers; Diagnostic Self Evaluation; Humans; Social Support
PubMed: 30867089
DOI: 10.1016/j.gerinurse.2019.03.003 -
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 -
African Journal of Disability 2023Families are the primary caregivers for persons with intellectual disability (ID), offering informal support to ensure community living. Ensuring families are adequately... (Review)
Review
BACKGROUND
Families are the primary caregivers for persons with intellectual disability (ID), offering informal support to ensure community living. Ensuring families are adequately supported is key to reduce the financial, physical, mental and social toll which long-standing inadequately supported care giving may evoke. Respite care is such a support service offered to caregivers and care-recipients with ID.
OBJECTIVE
Part of a larger study aimed at developing a respite care service framework for persons with ID for South Africa, the review aimed to elucidate what principles and practices inform current respite care services for this population globally.
METHOD
The Joanna Briggs Institute (JBI) scoping review framework guided the review. Databases were searched using key and surrogate terms for relevant literature published from 2006 to 2021.
RESULTS
Thirty-one sources met the inclusion criteria from 417 screened sources of evidence. These were published between 2006 and 2020, and included grey and peer-reviewed articles, the latter mostly mixed design. Information on respite care service characteristics, principles, practices, guidelines, evaluations and impacts were found for high- but not low-and-middle-income countries (LMICs).
CONCLUSION
There is an existing knowledge base that can be drawn on to inform the development of quality respite care. The lack of published information on respite care in LMICs necessitates further research to ensure contextually appropriate respite care developments in these settings.
CONTRIBUTION
This study contributes to the knowledge base on respite care for persons with ID and points out the research gap in LMICs.
PubMed: 38090196
DOI: 10.4102/ajod.v12i0.1115