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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 -
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 -
The Lancet. Oncology Feb 2024People experiencing homelessness have not yet benefited from the substantial progress made in managing cancers, including advances in chemotherapy and radiotherapy,... (Review)
Review
People experiencing homelessness have not yet benefited from the substantial progress made in managing cancers, including advances in chemotherapy and radiotherapy, surgical interventions, multidisciplinary team approaches, and integrated cancer care models. People experiencing homelessness are at higher risks of developing cancers and their mortality due to cancer is twice that of the general population. Potential interventions to improve access to cancer treatment include alliances and active engagement with community organisations and shelters, cancer case management and peer-to-peer support, mHealth and navigation strategies, tailored hospital discharge to adult group homes, well equipped subacute rehabilitation centres, and specialised shelters and respite housing to assure appropriate follow-up care. Other interventions include improving preventive care, expanding data, targeted policy efforts, and broader housing advocacy. In this Personal View, I discuss challenges and opportunities in cancer treatment, with a review of the current evidence on potential interventions, and highlight strategies to improve access to cancer care for homeless populations.
Topics: Adult; Humans; Ill-Housed Persons; Housing; Aftercare; Neoplasms
PubMed: 38301706
DOI: 10.1016/S1470-2045(23)00567-3 -
International Journal of Qualitative... Dec 2024Aging in place is favoured among older persons and supported by research in Sweden, although it poses challenges for overburdened informal caregivers. While respite care...
INTRODUCTION
Aging in place is favoured among older persons and supported by research in Sweden, although it poses challenges for overburdened informal caregivers. While respite care can offer support, its accessibility is hindered by organizational challenges and informal caregivers' delays in using it. The experiences of informal caregivers are well-studied, but the professionals' experiences of respite care quality and critical incident management are underexplored.
AIM
To explore professionals' experiences of critical incidents in respite care, consequences for the persons being cared for, and strategies to manage critical incidents.
MATERIALS AND METHODS
A qualitative, critical incident technique was used, and three group interviews with a total of 16 professionals were conducted.
RESULTS
Barriers to quality respite care included communication gaps during care transitions, environmental shortcomings in respite care facilities, lack of support for informal caregivers, and inadequacies in respite care decisions. Strategies to manage critical incidents included individualized care, continuity and communication in care transitions, a conducive environment, support for informal caregivers, and care professionals' positive approach.
CONCLUSIONS
The study emphasizes the need for focused efforts on communication, continuity, and a supportive environment. Addressing identified challenges and applying suggested strategies will be key to maximizing the potential of respite care as a vital support for care recipients and their informal caregivers.
Topics: Humans; Respite Care; Sweden; Caregivers; Qualitative Research; Male; Female; Health Personnel; Middle Aged; Adult; Communication; Attitude of Health Personnel; Quality of Health Care; Aged; Social Support; Continuity of Patient Care
PubMed: 38735060
DOI: 10.1080/17482631.2024.2352888 -
Journal of Anesthesia, Analgesia and... Jan 2023Adult and pediatric palliative care (PC) share common aims and ethical principles but differ in many organizational and practical aspects. The aim of this narrative... (Review)
Review
Adult and pediatric palliative care (PC) share common aims and ethical principles but differ in many organizational and practical aspects. The aim of this narrative review is to analyze these differences and focus on which key aspects of pediatric palliative care could integrate adult services for a better care of suffering patients.Interventions which are peculiar of pediatric PC respect to adult PC include: an earlier referral to the PC service to identify the needs and plan the interventions at an earlier stage of the disease; consequently, a more systematic cooperation with the disease-specific physicians to reduce the burden of treatments; a better integration with the community and the social surroundings of the patients, to prevent social isolation and preserve their social role; a more dynamic organization of the PC services, to give patients the chance of being stabilized at in-hospital or residential settings and subsequently discharged and cared at home whenever possible and desired; the implementation of respite care for adults, to help the families coping with the burden of the disease of their beloved and promote the home-based PC.This review underlines the relevance of some key-aspects of pediatric PC that can be beneficial also within PC of adults. Its findings give the chance for a more dynamic and modern organization of adult PC services and may serve as a basis of future research for new interventions.
PubMed: 37386675
DOI: 10.1186/s44158-023-00085-8