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International Psychogeriatrics May 2023To evaluate and synthesize the evidence base on barriers and facilitators to accessing and using community-based social care in dementia. (Review)
Review
OBJECTIVES
To evaluate and synthesize the evidence base on barriers and facilitators to accessing and using community-based social care in dementia.
DESIGN
Mixed-methods systematic review.
SETTING
Community-based social care (such as day care, respite care, paid home care, and peer support groups).
PARTICIPANTS
People living with dementia and unpaid carers.
MEASUREMENTS
Seven databases were searched in March 2022, including English and German evidence published from 2000 focusing on inequalities in community-based social care for dementia across the globe. Titles and abstracts were screened by two reviewers, with all full texts screened by two reviewers also. Study quality was assessed using QualSyst.
RESULTS
From 3,904 screened records, 39 papers were included. The majority of studies were qualitative, with 23 countries represented. Barriers and facilitators could be categorized into the following five categories/themes: situational, psychological, interpersonal, structural, and cultural. Barriers were notably more prominent than facilitators and were multifaceted, with many factors hindering or facilitating access to social care linked together.
CONCLUSIONS
People with dementia and carers experience significant barriers in accessing care in the community, and a varied approach on multiple levels is required to address systemic and individual-level barriers to enable more equitable access to care for all.
PubMed: 37170588
DOI: 10.1017/S104161022300042X -
Health Policy (Amsterdam, Netherlands) Mar 2021Internationally, deinstitutionalization and the provision of community-based care are growing policy aims. Several developed countries have thus introduced cash-for-care... (Review)
Review
BACKGROUND
Internationally, deinstitutionalization and the provision of community-based care are growing policy aims. Several developed countries have thus introduced cash-for-care schemes, which turn the traditional funding stream from the perspective of the care provider around, giving purchasing power to care users. This review explores whether cash-for-care schemes encourage the shift towards deinstitutionalization.
METHODS
Ten databases covering medical, nursing and social science journals were systematically screened up to July 10, 2020. Only peer-reviewed articles written in English or French and containing empirical evidence on the uptake of care services in a cash-for-care scheme were included.
RESULTS
The search resulted in 6,865 hits of which 27 articles were retained. Most studies took place in the United Kingdom or the United States. Overall, the search showed mixed results concerning the uptake of the different types of community-based care.
CONCLUSION
Evidence demonstrating a higher uptake of informal, respite or home care individually, is scarce and inconclusive. A reduction in residential care and an uptake of services in the community can, with caution, be noted. However, contextual and individual factors can affect the way deinstitutionalization takes place and which community-based services are chosen. Future research should therefore focus on the underlying processes and influencing factors, in order to obtain a clear view of the shift towards deinstitutionalization.
Topics: Delivery of Health Care; Home Care Services; Humans; United Kingdom; United States
PubMed: 33423802
DOI: 10.1016/j.healthpol.2020.11.002 -
The Gerontologist Aug 2021Though exercise for care recipients receives considerable emphasis, few dyadic studies focus on caregivers. This systematic review identified dyadic exercise... (Review)
Review
BACKGROUND AND OBJECTIVES
Though exercise for care recipients receives considerable emphasis, few dyadic studies focus on caregivers. This systematic review identified dyadic exercise interventions, which measured outcomes for older adult caregivers. Studies that met inclusion criteria were examined to better understand whether caregivers derived greater benefit from exercising with care recipients, or not exercising at all.
RESEARCH DESIGN AND METHODS
PRISMA guidelines were followed to identify quantitative studies of dyadic exercise interventions in which caregivers enrolled with care recipients, and either coparticipated in exercise; or while their care recipients exercised independently, caregivers received a separate, nonexercise intervention or usual care (UC). To be included, studies had to measure physical or psychosocial outcomes for caregivers. Study quality was assessed via the Downs and Black checklist.
RESULTS
Eleven studies met inclusion criteria. In six, the dyad exercised; in five, care recipients exercised while caregivers received a separate program, or UC. Results suggest that caregivers may improve both psychosocial and physical health when exercising together with care recipients. Caregivers who did not exercise but received a separate, nonexercise intervention, such as support, education, or respite, showed psychosocial benefits. Those who received UC were less likely to derive physical or psychosocial benefits. Included studies were fair to good quality with moderate to high risk of bias.
DISCUSSION AND IMPLICATIONS
Often examined secondarily, caregivers are overlooked for participation in interventions with care recipients. This analysis suggests that caregivers may benefit from dyadic interventions in which they either exercise together with their care recipients or receive a separate nonexercise intervention or respite.
Topics: Aged; Caregivers; Humans; Quality of Life
PubMed: 32614050
DOI: 10.1093/geront/gnaa043 -
International Journal of Nursing Studies Jul 2024To identify and categorize home- and community-based services used by older adults and the distribution of their utilization, and to examine their utilization patterns... (Meta-Analysis)
Meta-Analysis Review
OBJECTIVE
To identify and categorize home- and community-based services used by older adults and the distribution of their utilization, and to examine their utilization patterns in terms of region, time trends, and older adults' characteristics.
DESIGN
Systematic review and meta-analysis.
METHODS
We conducted a systematic search of six databases for studies published up to January 12, 2023, and performed meta-analyses and subgroup analyses to identify the utilization of home- and community-based services and analyze utilization patterns concerning region, time trends, and individual characteristics.
RESULTS
We included 42 studies from 10 countries worldwide, involving a total of 2,942,069 older adults. Home- and community-based services were grouped into three categories: health services, social services, and family caregiver services. Regional differences were consistently evident across all three categories of services, reflecting diverse patterns of home- and community-based service adoption worldwide. Notably, there was a significant increase in the utilization of social services, as distinct from health services and family caregiver services, during the post-2010 period (2010-2018) in comparison with the pre-2010 period (before 2010). In addition, age and cognitive function also played an important role in the utilization of home- and community-based services.
CONCLUSION
These findings highlight the importance of tailoring home- and community-based services to specific populations and understanding the needs of older adults over time. Further research should be undertaken to gain a deeper understanding of the reasons behind these variations and differences and to provide more targeted and effective services to older adults worldwide.
Topics: Humans; Aged; Home Care Services; Community Health Services
PubMed: 38703696
DOI: 10.1016/j.ijnurstu.2024.104774 -
Health & Social Care in the Community Sep 2021There is a lack of robust evidence regarding outcomes for day care use among older people living with long-term conditions (LTCs). Day care is provided by independent,... (Review)
Review
There is a lack of robust evidence regarding outcomes for day care use among older people living with long-term conditions (LTCs). Day care is provided by independent, private and voluntary and charitable sectors. This systematic review aims to establish current evidence of outcomes for older people with LTCs attending day care services and outcomes on carers, across all service models. Narrative synthesis of quantitative and qualitative data was undertaken. The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A systematic literature search was carried out across eight electronic databases and reference lists of key journals between 2004 and October 2020 were searched. Searches returned 1,202 unique titles. Forty-five articles from 16 countries met the criteria on review of title, abstract and full article. There is limited evidence suggesting improved levels of perceived psychological health, quality of life, perceived general health, physical health and functioning for older people attending day care who have LTCs. The respite function of day care resulted in positive outcomes for carers. Studies evaluating outcomes for participants or carers were limited in quantity and quality. There is limited information regarding outcomes for day care attendance for older people with multiple LTCs from existing literature. Further research focusing on LTCs and day care attendance would benefit this field.
Topics: Aged; Caregivers; Child; Child Day Care Centers; Day Care, Medical; Humans; Quality of Life
PubMed: 33332714
DOI: 10.1111/hsc.13245 -
Health Economics Review Sep 2021Nearly 19 million people across OECD countries are living with dementia, and millions of family caregivers are affected by the disease. The costs of informal care are... (Review)
Review
BACKGROUND
Nearly 19 million people across OECD countries are living with dementia, and millions of family caregivers are affected by the disease. The costs of informal care are estimated to represent 40-75% of the total dementia cost exceeding formal care time and medical costs.
OBJECTIVE
To conduct a systematic review to evaluate the methodological quality and factors associated with high informal care hours per month that increase societal costs, and to identify what type of interventions may alleviate the entire burden of informal and formal caregiving.
METHODS
The systematic review was registered at PROSPERO (15.12.2020). A search in Medline, Embase, PsycINFO, and web of science for observational studies, cost-effectiveness, and cost of illness (COI) analyses on resource utilization in dementia (RUD) was conducted on 1 December 2020. Our inclusion criteria included a requirement that studies had to use the original RUD, RUD-FOCA or RUD lite in terms of hours or days per month, and costs as primary or secondary outcome, OECD countries, within the last 20 years and a sample population comprising persons with dementia (PwD) ≥65 years and their caregivers. We followed the PRISMA, GRADE, PICO guidelines and Drummond criteria to assess the methodology and quality of the studies.
RESULTS
Of 307 studies, 26 cross-sectional and 3 longitudinal cohort studies were included in the analyses. Two studies had a randomized controlled trial (RCT) design. The methods and cost categories in each study varied widely. Disease severity, caregiver factors, and behavioural and psychological symptoms of dementia (BPSD) were associated with high informal care hours and societal cost. One RCT found no effect of a non-pharmacological intervention on informal care hours, yet another RCT found a cost-effective impact of an in-home respite care programme reducing informal care burden and costs.
CONCLUSION
The divergent use of the RUD components within included studies encourage more harmonized analyses. There are only two RCTs on RUD, one of which shows a significant treatment effect. Larger sample sizes and longer follow-up periods are required in future RCTs with dedicated focus on cost-enhancing and resource intensive factors such as disease severity and BPSD. Novel interventions must diversify between caregiver and PwD groups.
PROSPERO REGISTRATION
CRD42021226388 .
PubMed: 34536149
DOI: 10.1186/s13561-021-00333-z -
Genetics in Medicine : Official Journal... Apr 2024Rare genetic neurodevelopmental disorders associated with intellectual disability require lifelong multidisciplinary care. Clinical practice guidelines may support... (Review)
Review
PURPOSE
Rare genetic neurodevelopmental disorders associated with intellectual disability require lifelong multidisciplinary care. Clinical practice guidelines may support healthcare professionals in their daily practice, but guideline development for rare conditions can be challenging. In this systematic review, the characteristics and methodological quality of internationally published recommendations for this population are described to provide an overview of current guidelines and inform future efforts of European Reference Network ITHACA (Intellectual disability, TeleHealth, Autism, and Congenital Anomalies).
METHODS
MEDLINE, Embase, and Orphanet were systematically searched to identify guidelines for conditions classified as "rare genetic intellectual disability" (ORPHA:183757). Methodological quality was assessed using the Appraisal of Guidelines, Research, and Evaluation II tool.
RESULTS
Seventy internationally published guidelines, addressing the diagnosis and/or management of 28 conditions, were included. The methodological rigor of development was highly variable with limited reporting of literature searches and consensus methods. Stakeholder involvement and editorial independence varied as well. Implementation was rarely addressed.
CONCLUSION
Comprehensive, high-quality guidelines are lacking for many rare genetic neurodevelopmental disorders. Use and transparent reporting of sound development methodologies, active involvement of affected individuals and families, robust conflict of interest procedures, and attention to implementation are vital for enhancing the impact of clinical practice recommendations.
Topics: Humans; Intellectual Disability; Quality Improvement; Evidence-Based Medicine; Neurodevelopmental Disorders; Consensus
PubMed: 38224026
DOI: 10.1016/j.gim.2024.101071 -
BMC Geriatrics Mar 2023There is some evidence to suggest that animal-assisted interventions can have beneficial impact for residents in long-term care, but the focus of the evidence has... (Meta-Analysis)
Meta-Analysis
BACKGROUND
There is some evidence to suggest that animal-assisted interventions can have beneficial impact for residents in long-term care, but the focus of the evidence has largely been on behavioural and psychosocial measured outcomes. Animals, either as companion animals or in the form of pet/animal-assisted therapy, may provide benefits in the form of social contact, as well as opportunities for sensory experiences and meaningful engagement not picked up by outcome tools. This review aimed to create a state-of-knowledge synthesis, bringing together qualitative and quantitative findings, on the impact of animal-human interaction on care home residents and care home staff.
METHODS
Fourteen databases were searched from inception to July 2020. Forward and backward citation chasing of included articles was conducted. Screening was undertaken independently by a team of reviewers. Thematic synthesis and meta-analysis were used to synthesise the qualitative and quantitative data.
RESULTS
Thirty-four studies, published in 40 articles (20 qualitative and 20 quantitative) were included. Five themes relating to resident wellbeing were identified in the qualitative evidence synthesis. These were animals as 'living beings', reminiscence and storytelling, caring (as 'doing' and 'feeling'), respite (from loneliness, institutionalisation, and illness), and sensory engagement. A sixth theme related to staff perceptions and wellbeing, and a seventh to animal health and wellbeing. Maintaining identity was identified as an overarching theme. The majority of randomised trials had small sample sizes and were rated as low quality, mostly showing no evidence of beneficial effect. There was, however, limited evidence of a positive effect of pet/animal interaction on outcomes of loneliness, anxiety and depression, supporting the themes of respite and sensory engagement.
CONCLUSIONS
The presence of animals can significantly impact the health and wellbeing of some care home residents. Residents had meaningful relationships with animals and derived pleasure and comfort from them. Interacting with animals offered residents a way to maintain a sense of self in the care homes, and with support, residents with dementia could also express their identities. Facilitating residents to interact with animals as part of person-centred care may also help residents to feel 'at home' in the care home.
TRIAL REGISTRATION
PROSPERO registration no: CRD42017058201.
Topics: Animals; Humans; Animal Assisted Therapy; Long-Term Care
PubMed: 36964508
DOI: 10.1186/s12877-023-03834-0 -
Palliative Medicine Oct 2019There is increasing demand for primary care practitioners to play a key role in palliative care delivery. Given this, it is important to understand their perceptions of...
BACKGROUND
There is increasing demand for primary care practitioners to play a key role in palliative care delivery. Given this, it is important to understand their perceptions of the barriers and enablers to optimal palliative care, and how commonly these are experienced.
AIM
To explore the type and prevalence of barriers and enablers to palliative care provision reported by primary care practitioners.
DESIGN
A systematic review of quantitative data-based articles was conducted.
DATA SOURCES
Medline, Embase and PsychINFO databases were searched for articles published between January 2007 and March 2019.
DATA SYNTHESIS
Abstracts were assessed against the eligibility criteria by one reviewer and a random sample of 80 articles were blind coded by a second author. Data were extracted from eligible full-texts by one author and checked by a second. Given the heterogeneity in the included studies' methods and outcomes, a narrative synthesis was undertaken.
RESULTS
Twenty-one studies met the inclusion criteria. The most common barriers related to bureaucratic procedures, communication between healthcare professionals, primary care practitioners' personal commitments, and their skills or confidence. The most common enablers related to education, nurses and trained respite staff to assist with care delivery, better communication between professionals, and templates to facilitate referral to out-of-hours services.
CONCLUSION
A holistic approach addressing the range of barriers reported in this review is needed to support primary care providers to deliver palliative care. This includes better training and addressing barriers related to the interface between healthcare services.
Topics: Attitude of Health Personnel; Clinical Competence; Communication; Delivery of Health Care; Health Services Accessibility; Humans; Interprofessional Relations; Palliative Care; Primary Health Care; Qualitative Research; Self Efficacy
PubMed: 31630630
DOI: 10.1177/0269216319865414 -
Journal of Developmental and Behavioral... 2020Camps for children with cancer and their families aim to promote positive psychosocial and physical outcomes for attendees. However, evidence for this is inconsistent,...
OBJECTIVE
Camps for children with cancer and their families aim to promote positive psychosocial and physical outcomes for attendees. However, evidence for this is inconsistent, and previous reviews have not delineated between camps for children (patient/survivors and siblings) and family camps (including parents/guardians). Such understanding is necessary to understand the evidence-based benefits of each type of camp. Our systematic review summarizes the findings and limitations of the recent literature for children's camps and family camps.
METHODS
We searched MEDLINE/PubMed, PsycINFO, Social Work Abstracts, and Google Scholar for relevant articles published between 2013 and 2018.
RESULTS
Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses protocol, we included 19 articles (from 15 studies) in the review. Evidence for the impact of camps was mixed. All articles reported positive outcomes, yet 3 quantitative articles also reported nonsignificant changes. Camps for children (representing 2151 children with cancer/survivors) appeared to facilitate social skills, self-esteem, and physical activity. Family camps (representing 96 families) may provide families the opportunity to reconnect. Both types of camp provide attendees with social support and fun/respite. In 2 qualitative articles, some parents attending family camps reported tension between families of children on treatment and bereaved families. The literature is limited by small sample sizes and the lack of multisite, longitudinal, and controlled study designs.
CONCLUSION
The recent literature provides evidence for some positive, short-term psychosocial and physical outcomes of camps. Future research should use rigorous quasiexperimental designs and should assess the long-term impact of camp attendance.
Topics: Adult; Cancer Survivors; Child; Exercise; Family; Humans; Neoplasms; Outcome and Process Assessment, Health Care; Recreation; Social Support
PubMed: 31567721
DOI: 10.1097/DBP.0000000000000728