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Health and Social Care Delivery Research Jun 2024People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often...
BACKGROUND
People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis.
OBJECTIVES
(1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources.
DESIGN AND METHODS
Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews ( = 30), survey ( = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living ( = 4); residential/nursing home ( = 2); day activities ( = 1), Shared Lives ( = 2). Fieldwork (20 days per model), interviews ( = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations.
FINDINGS
The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers.
CONCLUSIONS
There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design.
LIMITATIONS
The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources.
FUTURE WORK
Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards.
TRIAL REGISTRATION
This trial is registered as ISRCTN74264887.
FUNDING
This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in ; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.
Topics: Humans; Caregivers; Aged; Learning Disabilities; Female; Male; Middle Aged; Adult; Social Support; Qualitative Research; Aged, 80 and over; Anthropology, Cultural; Health Services Needs and Demand
PubMed: 38940476
DOI: 10.3310/MTHW2644 -
International Journal of Environmental... May 2024The National Disability Insurance Scheme (NDIS) ushered in a transformative era in disability services in Australia, requiring new workforce models to meet evolving... (Review)
Review
The National Disability Insurance Scheme (NDIS) ushered in a transformative era in disability services in Australia, requiring new workforce models to meet evolving participant needs. Therapy Assistants are utilised to increase the capacity of therapy services in areas of workforce shortage. The governance arrangements required to support this emergent workforce have received limited attention in the literature. This review examined the key components and contextual factors of governance in rural settings, specifically focusing on therapy support workers under the guidance of allied health professionals in rural and remote areas. Guided by the social model of disability and the International Classification of Functioning, Disability and Health, a realist perspective was used to analyse 26 papers (after deduplication), mostly Australian and qualitative, with an emphasis on staff capabilities, training, and credentialling. Success measures were often vaguely defined, with most papers focusing on staff improvement and few focusing on client or organisational improvement. Consistent staffing, role clarity, community collaboration, and supportive leadership were identified as enabling contexts for successful governance of disability therapy support workers in rural areas. Investment in capability (soft skills) development, tailored training, competency assessment, credentialling, and supervision were identified as key activities that, when coupled with the identified enabling contexts, were likely to influence staff, client and organisational outcomes. Further research is warranted to explore long-term impacts of governance arrangements, educational program accountability, and activities targeted at enhancing staff capabilities.
Topics: Humans; Disabled Persons; Australia; Rural Health Services; Rural Population; Allied Health Personnel
PubMed: 38928939
DOI: 10.3390/ijerph21060693 -
Chiropractic & Manual Therapies Jun 2024To assess the concurrent validity and inter-rater agreement of the diagnosis of musculoskeletal (MSK) conditions using synchronous telehealth compared to standard... (Review)
Review
OBJECTIVES
To assess the concurrent validity and inter-rater agreement of the diagnosis of musculoskeletal (MSK) conditions using synchronous telehealth compared to standard in-person clinical diagnosis.
METHODS
We searched five electronic databases for cross-sectional studies published in English in peer-reviewed journals from inception to 28 September 2023. We included studies of participants presenting to a healthcare provider with an undiagnosed MSK complaint. Eligible studies were critically appraised using the QUADAS-2 and QAREL criteria. Studies rated as overall low risk of bias were synthesized descriptively following best-evidence synthesis principles.
RESULTS
We retrieved 6835 records and 16 full-text articles. Nine studies and 321 patients were included. Participants had MSK conditions involving the shoulder, elbow, low back, knee, lower limb, ankle, and multiple conditions. Comparing telehealth versus in-person clinical assessments, inter-rater agreement ranged from 40.7% agreement for people with shoulder pain to 100% agreement for people with lower limb MSK disorders. Concurrent validity ranged from 36% agreement for people with elbow pain to 95.1% agreement for people with lower limb MSK conditions.
DISCUSSION
In cases when access to in-person care is constrained, our study implies that telehealth might be a feasible approach for the diagnosis of MSK conditions. These conclusions are based on small cross-sectional studies carried out by similar research teams with similar participant demographics. Additional research is required to improve the diagnostic precision of telehealth evaluations across a larger range of patient groups, MSK conditions, and diagnostic accuracy statistics.
Topics: Humans; Musculoskeletal Diseases; Telemedicine; Reproducibility of Results; Cross-Sectional Studies
PubMed: 38872176
DOI: 10.1186/s12998-024-00542-3 -
The Gerontologist Jun 2024Self-direction is an approach that allows older adults and people with disabilities to determine the home and community-based services they receive, including the...
BACKGROUND AND OBJECTIVES
Self-direction is an approach that allows older adults and people with disabilities to determine the home and community-based services they receive, including the ability to hire caregivers of their choice. Self-direction has been shown to improve outcomes for the service recipients. The promotion of choice and control in self-direction may also affect family caregivers. We conducted a systematic review examining the impact of self-direction on a broad range of caregiver outcomes.
RESEARCH DESIGN AND METHODS
We conducted a systematic review guided by PRISMA guidelines. Literature search was conducted in 8 databases. We appraised risk of bias using the Joanna Briggs Institute critical appraisal checklists and assessed certainty of evidence using the GRADE framework.
RESULTS
Sixteen studies meeting inclusion criteria were included. We found, with moderate certainty, that self-direction is associated with improved caregivers' personal and social wellbeing. Caregivers also reported reduced unmet needs and increased access to care for the care recipients under self-direction. Self-direction did not appear to reduce caregiving hours. With less certainty, self-direction was also positively associated with increased respite care use, perception of choice, and intention to continue caregiving by caregivers.
DISCUSSION AND IMPLICATIONS
Beyond delivering person-centered services that improve recipient outcomes, self-direction may also improve the outcomes of family caregivers.
PubMed: 38853407
DOI: 10.1093/geront/gnae068 -
Ethiopian Journal of Health Sciences Sep 2023Most amputees suffered from lack of rehabilitation services and went on streets as glorified beggars. However, there is a paucity of information about determinant causes... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Most amputees suffered from lack of rehabilitation services and went on streets as glorified beggars. However, there is a paucity of information about determinant causes of amputation in Ethiopia. Therefore, this systematic review and meta-analysis was conducted to estimate pooled prevalence of limb amputation and its determinant causes in Ethiopian population.
METHODS
Worldwide databases such as PubMed/MedLine, Web of Science, CINAHL, Embase, Scopus, and Science Direct were searched to retrieve pertinent articles. Grey literatures were also looked in local and national repositories. Microsoft excel was used to extract data which were exported to stata version 14.0 for analysis. Cochrane Q and I tests were used to assess heterogeneity. Egger's and Begg's tests were employed to assess reporting biases. Random effect meta-analysis model was applied to estimate pooled prevalence.
RESULTS
Twenty-one qualified studies with 18,900 study participants were reviewed. Pooled prevalence of limb amputation was 31.69%. Lower extremity amputation (LEA) accounted for 14.41%, and upper extremity amputation (UEA) took 10.53% (6.50, 14.53). Above knee amputations (2.50 %) were common orthopedic operations whereas ray amputations (0.03%) were the least orthopedic procedures of LEA. Above elbow amputations (2.46%) were common from UEA while shoulder disarticulations (0.02%) were the least orthopedic surgical procedures. The major causes of limb amputations were trauma (11.05%), diabetic foot ulcer (9.93 %), traditional bone setters (24.10%) and burn (10.63%).
CONCLUSIONS
Lower extremity amputations were common orthopedic surgical procedures. Major determinant causes were trauma, diabetic foot ulcer, traditional bone setters and burn.
Topics: Humans; Ethiopia; Amputation, Surgical; Lower Extremity; Prevalence; Amputees; Upper Extremity
PubMed: 38784515
DOI: 10.4314/ejhs.v33i5.19 -
International Journal of Nursing... Dec 2023Snoezelen focuses on multisensory stimulation in an adapted environment and was originally developed for people with severe and profound intellectual (and multiple)... (Review)
Review
BACKGROUND
Snoezelen focuses on multisensory stimulation in an adapted environment and was originally developed for people with severe and profound intellectual (and multiple) disabilities. Snoezelen has been used for many years with various target groups and for different purposes. Variation in its application has resulted in a lack of understanding of snoezelen's application characteristics and of how they may relate to effects.
OBJECTIVE
The aim of this review was to provide an overview of the application and effects of snoezelen in people with intellectual disability or dementia in order to analyse the relationship between application characteristics and effects.
DESIGN
A systematic review.
METHODS
Five databases were searched for snoezelen studies that took place in a specially adapted environment. The methodological quality of the included studies was assessed using the Mixed Methods Appraisal Tool. The application characteristics (that is, the stimuli used, environment, and support given) and the effects were extracted. Reported effects were categorized into different human functioning dimensions using the model of intellectual disabilities of the American Association on Intellectual and Developmental Disabilities.
RESULTS
In total, 62 studies involving people with intellectual disability ( = 30) or dementia ( = 32) were included. An overview of snoezelen used in other target groups ( = 24) is provided as supplementary material. Details on the application of snoezelen were often lacking. A total of 10 application characteristics (for example, frequency, role of the support person) were extracted. All studies reported the presence of a support person ( = 62; 100%). Effects were found in all five human functioning dimensions. The most-reported effects (61.3% overall) related to mental health, such as a reduction in challenging behaviour and improved mood. In a minority of studies ( = 10, 16.1%), effects on the support person were also reported. Due to limited details about the application of snoezelen and the large variation in measured effects, analysing the relationship between these was impossible.
CONCLUSIONS
The majority of studies lacked details on application characteristics during snoezelen. Reported effects varied, although most related to mental health. Future research should analyse in detail the relationship between application and effects.
PubMed: 38746578
DOI: 10.1016/j.ijnsa.2023.100152 -
Clinical Psychology Review Jun 2024Behaviours that challenge (BtC) are common in people with intellectual disability (ID) and associated with negative long-term outcomes. Reliable characterisation of BtC... (Meta-Analysis)
Meta-Analysis Review
Measurement tools for behaviours that challenge and behavioural function in people with intellectual disability: A systematic review and meta-analysis of internal consistency, inter-rater reliability, and test-retest reliability.
Behaviours that challenge (BtC) are common in people with intellectual disability (ID) and associated with negative long-term outcomes. Reliable characterisation of BtC and behavioural function is integral to person-centred interventions. This systematic review and meta-analytic study quantitatively synthesised the evidence-base for the internal consistency, inter-rater reliability, and test-retest reliability of measures of BtC and behavioural function in people with ID (PROSPERO: CRD42021239042). Web of Science, Embase, PsycINFO and MEDLINE were searched from inception to March 2024. Retrieved records (n = 3691) were screened independently to identify studies assessing eligible measurement properties in people with ID. Data extracted from 83 studies, across 29 measures, were synthesised in a series of random-effects meta-analyses. Subgroup analyses assessed the influence of methodological quality and study-level characteristics on pooled estimates. COSMIN criteria were used to evaluate the measurement properties of each measure. Pooled estimates ranged across measures: internal consistency (0.41-0.97), inter-rater reliability (0.29-0.93) and test-retest reliability (0.52-0.98). The quantity and quality of evidence varied substantially across measures; evidence was frequently unavailable or limited to a single study. Based on current evidence, candidate measures with the most evidence for internal consistency and reliability are discussed; however, continued assessment of measurement properties in ID populations is a key priority.
Topics: Humans; Intellectual Disability; Reproducibility of Results; Psychometrics
PubMed: 38718632
DOI: 10.1016/j.cpr.2024.102434 -
The Lancet. Public Health May 2024Globally, 1·3 billion people have a disability and are more likely to experience poor health than the general population. However, little is known about the mortality... (Meta-Analysis)
Meta-Analysis
BACKGROUND
Globally, 1·3 billion people have a disability and are more likely to experience poor health than the general population. However, little is known about the mortality or life expectancy gaps experienced by people with disabilities. We aimed to undertake a systematic review and meta-analysis of the association between disability and mortality, compare these findings to the evidence on the association of impairment types and mortality, and model the estimated life expectancy gap experienced by people with disabilities.
METHODS
We did a mixed-methods study, which included a systematic review and meta-analysis, umbrella review, and life expectancy modelling. For the systematic review and meta-analysis, we searched MEDLINE, Global Health, PsycINFO, and Embase for studies published in English between Jan 1, 2007, and June 7, 2023, investigating the association of mortality and disability. We included prospective and retrospective cohort studies and randomised controlled trials with a baseline assessment of disability and a longitudinal assessment of all-cause mortality or cause-specific mortality. Two reviewers independently assessed study eligibility, extracted the data, and assessed risk of bias. We did a random-effects meta-analysis to calculate a pooled estimate of the mortality rate ratio for people with disabilities compared with those without disabilities. We did an umbrella review of meta-analyses examining the association between different impairment types and mortality. We used life table modelling to translate the mortality rate ratio into an estimate of the life expectancy gap between people with disabilities and the general population. The systematic review and meta-analysis is registered with PROSPERO, CRD42023433374.
FINDINGS
Our search identified 3731 articles, of which 42 studies were included in the systematic review. The meta-analysis included 31 studies. Pooled estimates showed that all-cause mortality was 2·24 times (95% CI 1·84-2·72) higher in people with disabilities than among people without disabilities, although heterogeneity between the studies was high (τ=0·28, I=100%). Modelling indicated a median gap in life expectancy of 13·8 years (95% CI 13·1-14·5) by disability status. Cause-specific mortality was also higher for people with disabilities, including for cancer, COVID-19, cardiovascular disease, and suicide. The umbrella review identified nine meta-analyses, which showed consistently elevated mortality rates among people with different impairment types.
INTERPRETATION
Mortality inequities experienced by people with disabilities necessitate health system changes and efforts to address inclusion and the social determinants of health.
FUNDING
National Institute for Health and Care Research, Rhodes Scholarship, Indonesia Endowment Funds for Education, Foreign, Commonwealth and Development Office (Programme for Evidence to Inform Disability Action), and the Arts and Humanities Research Council.
Topics: Humans; Disabled Persons; Life Expectancy; Mortality
PubMed: 38702095
DOI: 10.1016/S2468-2667(24)00054-9 -
Journal of Stroke and Cerebrovascular... Apr 2024With approximately 11 million strokes occurring annually worldwide, and over 6.5 million deaths annually, stroke has made its place as one of the major killers in the...
BACKGROUND
With approximately 11 million strokes occurring annually worldwide, and over 6.5 million deaths annually, stroke has made its place as one of the major killers in the world. Although developing countries make up more than 4/5 of the global stroke burden, well-grounded information on stroke epidemiology remains lacking there.
AIMS
This systematic review study aimed to provide a synthesis of studies on the incidence and prevalence of stroke among adults in sub-Saharan Africa (SSA), subsequently deduce the associated risk factors and public health implications (mortality rates and economic costs) of the disease on the population of this region.
METHODS
A systematic review of studies carried out in the region and published on PUBMED. Eligibility criteria were established using the PEO (Population/Patient, Exposure, Outcome) format. Research articles investigating either (or all) of the following: ischemic or haemorrhagic stroke, incidence, prevalence, and risk factors of stroke in adults (≥ 18 years old), in at least one region of SSA were included. Exclusion criteria comprised studies involving populations younger than 18 years old, research conducted outside the designated research region, and articles inaccessible in full text. The PRISMA guidelines were used for the search strategy.
RESULTS
Fifty-two studies were included review. Among them, over 11 studies investigated the prevalence of the disease. Some older studies within the continent (Nigeria, 2011) showed a prevalence of 1.3 per 100 while more recent studies (Zambia, 2021) showed a prevalence of 4.3 per 1000. The highest prevalence noted in this region was in Madagascar (2017) with 48.17 per 100, while the lowest was recorded in (Zimbabwe, 2017) with 0.61 per 100. The study in Tanzania showed a crude incidence of 94·5 per 100 000 (76·0-115·0) while the study in Ghana in 2018 showed an incidence of 14.19 events per 1000 person-years [10.77-18.38]. The identified risk factors included hypertension, diabetes, smoking, alcohol consumption, physical inactivity, poor diets (more salt, less vegetables), dyslipidaemia, HIV/AIDS co-infection, heart disease (cardiomyopathies, cardiac arrhythmias), obesity, previous stroke and/or family history of stroke. Over 21 studies investigated the mortality rates due to stroke in SSA, with most of the studies being in West Africa. These studies revealed mortality rates as high as 43.3% in Ghana, and as low as 10.9% in Cameroon. Few studies reported on the economic costs of stroke in the region; two in Benin, two in Nigeria and one in Tanzania.
CONCLUSION
The increasing incidence/prevalence, lifestyle factors and interactions with other diseases, including major communicable diseases, stroke is becoming a pressing public health problem for SSA. Reducing the incidence of stroke in Africa will surely lower mortality, morbidity, disability, and the neurological as well as cognitive aftereffects of stroke, as is clear from the experience of higher-income nations. We recommend a collective intervention involving the governments of nations, international organizations, civil society, and the private sector for greater impact and sustainable outcomes reducing the epidemiology and implications of stroke in SSA.
PubMed: 38663647
DOI: 10.1016/j.jstrokecerebrovasdis.2024.107733 -
Journal of Psychosomatic Research Jun 2024To estimate the prevalence of depression in people with limb amputation. Additionally, factors affecting the prevalence or pattern of depression following limb... (Meta-Analysis)
Meta-Analysis Review
OBJECTIVE
To estimate the prevalence of depression in people with limb amputation. Additionally, factors affecting the prevalence or pattern of depression following limb amputation were explored.
METHODS
Systematic literature search to identify all relevant studies assessing prevalence of depression following limb amputations was conducted through following databases: PubMed/ MEDLINE, Scopus, Embase, and Web of Science. Search period was since inception of database till December 2021. Meta-analyses using random-effects model were conducted to estimate pooled prevalence of depression.
RESULTS
A total of 61 studies comprising 9852 limb amputees were included. Pooled prevalence of depression following limb amputations was 33.85% (95% CI: 27.15% to 40.54%), with significant heterogeneity (I = 98.57%; p < 0.001). Sub-group meta-analysis showed that pooled prevalence of depression was significantly higher in studies conducted from middle-income (45.31%, 95% CI: 28.92% to 61.70%) as compared high income countries (28.31%, 95% CI: 23.97% to 32.64%). Greater activity restriction, amputation-related body image disturbances, social discomfort, perceived vulnerability regarding disability, and avoidant coping style were commonly reported factors associated with greater depression symptomatology. Whereas, good perceived social support, and use of more active coping strategies were commonly reported protective factors.
CONCLUSION
About one-third of all limb amputees suffered from clinically significant depression. This emphasizes need to sensitize health care professionals involved in providing care to people following limb amputation regarding the importance of periodically screening this vulnerable group of patients for depression and liaising with psychiatrists. Further, addressing risk factors identified in this review could help in reducing the rates of depression post-amputation.
Topics: Humans; Amputation, Surgical; Prevalence; Depression; Amputees; Adaptation, Psychological; Female; Male
PubMed: 38657566
DOI: 10.1016/j.jpsychores.2024.111677