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"Kuper, Hannah"
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Depression and anxiety in parents of children with intellectual and developmental disabilities: A systematic review and meta-analysis
2019
Although caring for a child with intellectual and developmental disabilities (IDD) can have positive outcomes, parents may be at a greater risk of depression and anxiety, due to a number of associated stressors, such as increased caregiver demands and financial strain. This systematic review updates previous data, exploring the relationship between parenting a child with IDD and parental depression and anxiety.
Five electronic databases were searched for eligible English-language articles, published between January 2004 and July 2018. All epidemiological study designs were eligible, provided the level of depression and/or anxiety was compared between parents of children (aged <18) with and without IDD. No limit was placed on geographic location. The proportion of positive associations between parenting a child with IDD and depression/anxiety were disaggregated by disability type, geographic region, and sample size. The percentage of parents at risk of moderate depression or anxiety were calculated using recognised clinical cut-off scores for each screening tool. Meta-analyses, in which pooled effect sizes of elevated depression and anxiety symptoms were calculated, were conducted across two IDD conditions, autism and cerebral palsy.
Of the 5,839 unique records screened, 19 studies fulfilled the inclusion criteria. The majority of studies were conducted in high-income (n = 8, 42%) or upper-middle income countries (n = 10, 53%). Of the 19 studies, 69% focused on parents of children with cerebral palsy (n = 7, 37%) or autism (n = 6, 32%). Nearly all studies found a positive association between parenting a child with IDD and depression (n = 18, 95%) and anxiety (n = 9, 90%) symptoms. Factors associated with higher levels of depression symptoms amongst parents of children with IDD included disability severity (n = 8, 78%) and lower household income (n = 4, 80%). Approximately one third (31%) of parents of children with IDD reach the clinical cut-off score for moderate depression, compared with 7% of parents of children without IDD. 31% of parents of children with IDD reach the cut-off score for moderate anxiety, compared with 14% of parents of children without IDD. The meta-analyses demonstrated moderate effect sizes for elevated depression amongst parents of children with autism and cerebral palsy.
Results indicate elevated levels of depressive symptoms amongst parents of children with IDD. Quality concerns amongst the existing literature support the need for further research, especially in low- and middle-income countries.
Journal Article
Prevalence of depression, anxiety and post-traumatic stress disorder in health care workers during the COVID-19 pandemic: A systematic review and meta-analysis
by
Kuper, Hannah
,
Scherer, Nathaniel
,
Li, Yufei
in
Anxiety
,
Anxiety - epidemiology
,
Anxiety disorders
2021
The COVID-19 pandemic has placed health care workers under psychological stress. Previous reviews show a high prevalence of mental disorders among health care workers, but these need updating and inclusion of studies written in Chinese. The aim of this systematic review and meta-analysis was to provide updated prevalence estimates for depression, anxiety and post-traumatic stress disorder (PTSD) among health care workers during the COVID-19 pandemic, benefitting from the inclusion of studies published in Chinese.
Systematic search of EMBASE, MEDLINE, PsycINFO, Global Health, Web of Science, CINAHL, Google Scholar and the Chinese databases SinoMed, WanfangMed, CNKI and CQVIP, for studies conducted between December 2019 and August 2020 on the prevalence of depression, anxiety and PTSD in health care workers during the COVID-19 pandemic. Studies published in both English and Chinese were included.
Data on the prevalence of moderate depression, anxiety and PTSD was pooled across 65 studies involving 97,333 health care workers across 21 countries. The pooled prevalence of depression was 21.7% (95% CI, 18.3%-25.2%), of anxiety 22.1% (95% CI, 18.2%-26.3%), and of PTSD 21.5% (95% CI, 10.5%-34.9%). Prevalence estimates are also provided for a mild classification of each disorder. Pooled prevalence estimates of depression and anxiety were highest in studies conducted in the Middle-East (34.6%; 28.9%). Subgroup and meta-regression analyses were conducted across covariates, including sampling method and outcome measure.
This systematic review and meta-analysis has identified a high prevalence of moderate depression, anxiety and PTSD among health care workers during the COVID-19 pandemic. Appropriate support is urgently needed. The response would benefit from additional research on which interventions are effective at mitigating these risks.
Journal Article
Poverty and disability in low- and middle-income countries: A systematic review
2017
Disability and poverty are believed to operate in a cycle, with each reinforcing the other. While agreement on the existence of a link is strong, robust empirical evidence substantiating and describing this potential association is lacking. Consequently, a systematic review was undertaken to explore the relationship between disability and economic poverty, with a focus on the situation in low and middle income countries (LMICs).
Ten electronic databases were searched to retrieve studies of any epidemiological design, published between 1990-March 2016 with data comparing the level of poverty between people with and without disabilities in LMICs (World Bank classifications). Poverty was defined using economic measures (e.g. assets, income), while disability included both broad assessments (e.g. self-reported functional or activity limitations) and specific impairments/disorders. Data extracted included: measures of association between disability and poverty, population characteristics and study characteristics. Proportions of studies finding positive, negative, null or mixed associations between poverty and disability were then disaggregated by population and study characteristics.
From the 15,500 records retrieved and screened, 150 studies were included in the final sample. Almost half of included studies were conducted in China, India or Brazil (n = 70, 47%). Most studies were cross-sectional in design (n = 124, 83%), focussed on specific impairment types (n = 115, 77%) and used income as the measure for economic poverty (n = 82, 55%). 122 studies (81%) found evidence of a positive association between disability and a poverty marker. This relationship persisted when results were disaggregated by gender, measure of poverty used and impairment types. By country income group at the time of data collection, the proportion of country-level analyses with a positive association increased with the rising income level, with 59% of low-income, 67% of lower-middle and 72% of upper-middle income countries finding a positive relationship. By age group, the proportion of studies reporting a positive association between disability and poverty was lowest for older adults and highest for working-age adults (69% vs. 86%).
There is strong evidence for a link between disability and poverty in LMICs and an urgent need for further research and programmatic/policy action to break the cycle.
Journal Article
Do people with disabilities experience disparities in cancer care? A systematic review
2023
Over 1.3 billion people, or 16% of the world's population, live with some form of disability. Recent studies have reported that people with disabilities (PwD) might not be receiving state-of-the-art treatment for cancer as their non-disabled peers; our objective was to systematically review this topic.
A systematic review was undertaken to compare cancer outcomes and quality of cancer care between adults with and without disabilities (NIHR Prospero register ID number: CRD42022281506). A search of the literature was performed in July 2022 across five databases: EMBASE, Medline, Cochrane Library, Web of Science and CINAHL databases. Peer-reviewed quantitative research articles, published in English from 2000 to 2022, with interventional or observational study designs, comparing cancer outcomes between a sample of adult patients with disabilities and a sample without disabilities were included. Studies focused on cancer screening and not treatment were excluded, as well as editorials, commentaries, opinion papers, reviews, case reports, case series under 10 patients and conference abstracts. Studies were evaluated by one reviewer for risk of bias based on a set of criteria according to the SIGN 50 guidelines. A narrative synthesis was conducted according to the Cochrane SWiM guidelines, with tables summarizing study characteristics and outcomes. This research received no external funding.
Thirty-one studies were included in the systematic review. Compared to people without disabilities, PwD had worse cancer outcomes, in terms of poorer survival and higher overall and cancer-specific mortality. There was also evidence that PwD received poorer quality cancer care, including lower access to state-of-the-art care or curative-intent therapies, treatment delays, undertreatment or excessively invasive treatment, worse access to in-hospital services, less specialist healthcare utilization, less access to pain medications and inadequate end-of-life quality of care.
Limitations of this work include the exclusion of qualitative research, no assessment of publication bias, selection performed by only one reviewer, results from high-income countries only, no meta-analysis and a high risk of bias in 15% of included studies. In spite of these limitations, our results show that PwD often experience severe disparities in cancer care with less guideline-consistent care and higher mortality than people without disabilities. These findings raise urgent questions about how to ensure equitable care for PwD; in order to prevent avoidable morbidity and mortality, cancer care programs need to be evaluated and urgently improved, with specific training of clinical staff, more disability inclusive research, better communication and shared decision-making with patients and elimination of physical, social and cultural barriers.
Journal Article
Systematic review of menstrual hygiene management requirements, its barriers and strategies for disabled people
2019
One quarter of the global population is of menstruating age, yet menstruation is shrouded in discrimination and taboos. Disability also carries stigma, so disabled people may face layers of discrimination when they are menstruating. The objective of the review is to assess the menstrual hygiene requirements of disabled people, the barriers they face, and the available interventions to help them manage their menstruation hygienically and with dignity.
Eligible studies, gathered across all countries, were identified by conducting searches across four databases (MEDLINE, PubMed, EMBASE, Global Health) in May 2017, with alerts set on each database to highlight new titles added until April 2018. Eligible studies incorporated analyses relevant to menstruating disabled people and/or how their carers provide support during their menstrual cycle.
The 22 studies included were published since 1976; the majority after 2010 (n = 12; 55%). One study was a quasi-experiment; all others were observational. Most studies (n = 15; 68%) were from high income countries and most (n = 17; 77%) focused on people with intellectual impairments, so the review findings focus on this group and their carers. Outcomes investigated include choice and preference of menstrual product, ability to manage menstrual hygiene and coping strategies applied. Barriers faced included a lack of standardised guidance for professional carers; a lack of menstruation training, information and support provided to people with intellectual impairments and their carers; a lack of understanding of severity of symptoms experienced by people with intellectual impairments, the high cost of menstrual products and lack of appropriate options for people with physical impairments. Few interventions were found, and strategies for menstrual hygiene management applied by carers of persons with intellectual impairments include limiting the disabled person's movements when menstruating and suppressing their menstruation.
Little evidence was identified on the requirements of disabled people and their carers in managing their menstruation, and only one intervention, but a range of barriers were identified. This gap in evidence is important, as the consequences of failing to meet menstrual hygiene needs of disabled people includes shame, social isolation, and even sterilisation.
PROSPERO CRD42018095497.
Journal Article
Survey of ENT services in sub-Saharan Africa: little progress between 2009 and 2015
by
Kuper, Hannah
,
Mulwafu, Wakisa
,
Fagan, Johannes
in
Africa South of the Sahara
,
Audiology
,
Audiology - standards
2017
Background: A 2009 survey of ENT, audiology, and speech therapy services and training opportunities in 18 Sub-Saharan African countries reported that the availability of services was extremely poor, the distribution of services was very inequitable, and training opportunities were limited.
Objective: We conducted a new survey to determine the current status of ear, nose, and throat (ENT), audiology, and speech therapy services in sub-Saharan Africa.
Method: This study is a cross-sectional study. A questionnaire was distributed by email to an ad hoc group of ENT surgeons and audiologists in 30 sub-Saharan African countries. Data from the current survey were compared to those of a 2009 survey. The numbers of ENT surgeons, audiologists, and speech therapists/100,000 people were compared to the ratios in the United Kingdom.
Results: A total of 22 countries responded to the questionnaire. When data of the 15 countries that responded in both 2009 and 2015 are compared, the number of ENT surgeons had increased by 43%, audiologists had increased by 2.5%, and speech therapists by 30%. When the 23% population growth is taken into account, the numbers of ENT surgeons, audiologists, and speech therapists per 100,000 people had declined in four countries, and there remains a severe shortfall of ENT surgeons, audiologists, and speech therapists when compared to the UK Respondents cited lack of availability of basic equipment as the most frequent limitation in providing ENT services. Other important factors causing limitations in daily practice were: lack of ENT training facilities and audiological rehabilitation, low awareness of the burden of ENT pathology, as well as poor human resources management.
Conclusions: There has been a lack of progress in ENT, audiology, and speech therapy services and training opportunities in sub-Saharan Africa between 2009 and 2015. There is a need to look at increased collaboration with developed countries and non-governmental organisations, establishing new and improving existing training centres in Africa, and task-shifting of some ENT services to primary health workers.
Journal Article
A systematic review of strategies to increase access to health services among children in low and middle income countries
2017
Background
Universal Health Coverage is widely endorsed as the pivotal goal in global health, however substantial barriers to accessing health services for children in low and middle-income countries (LMIC) exist. Failure to access healthcare is an important contributor to child mortality in these settings. Barriers to access have been widely studied, however effective interventions to overcome barriers and increase access to services for children are less well documented.
Methods
We conducted a systematic review of effectiveness of interventions aimed at increasing access to health services for children aged 5 years and below in LMIC. Four databases (EMBASE, Global Health, MEDLINE, and PSYCINFO) were searched in January 2016. Studies were included if they evaluated interventions that aimed to increase: health care utilisation; immunisation uptake; and compliance with medication or referral. Randomised controlled trials and non-randomised controlled study designs were included in the review. A narrative approach was used to synthesise results.
Results
Fifty seven studies were included in the review. Approximately half of studies (49%) were conducted in sub-Saharan Africa. Most studies were randomised controlled trials (
n
= 44; 77%) with the remaining studies employing non-randomised designs. Very few studies were judged as high quality. Studies evaluated a diverse range of interventions and various outcomes. Supply side interventions included: delivery of services at or closer to home and service level improvements (eg. integration of services). Demand side interventions included: educational programmes, text messages, and financial or other incentives. Interventions that delivered services at or closer to home and text messages were in general associated with a significant improvement in relevant outcomes. A consistent pattern was not noted for the remaining studies.
Conclusions
This review fills a gap in the literature by providing evidence of the range and effectiveness of interventions that can be used to increase access for children aged ≤5 years in LMIC. It highlights some intervention areas that seem to show encouraging trends including text message reminders and delivery of services at or close to home. However, given the methodological limitations found in existing studies, the results of this review must be interpreted with caution.
Systematic review registration
PROSPERO
CRD420160334200
Journal Article
Debate: can we achieve universal health coverage without a focus on disability?
2018
Background
The achievement of Universal Health Coverage (UHC) is a key aim of the global health agenda, and an important target of the Sustainable Development Goals. There is increasing recognition that some groups may fall behind in efforts to achieve UHC, including the 1 billion people globally living with disabilities. A fundamental question for debate is – can UHC be achieved without the inclusion of people with disabilities?
Main text
People with disabilities are more likely to experience poor health. They will therefore have greater need for general healthcare services, as well as rehabilitation and specialist services, related to their underlying impairment. People with disabilities also frequently face additional difficulties in accessing healthcare, incur greater costs when seeking healthcare and often report experiencing worse quality services than others. As a consequence of these different challenges, people with disabilities face specific and added difficulties across three dimensions of UHC: coverage, access to services needed, and at reasonable cost. A focus on people with disabilities is therefore essential to achieving UHC, particularly since they constitute 15% of the global population. To ensure the realisation of UHC is inclusive of and addresses the needs of people with disabilities, health systems need to adapt. A twin-tracked approach is recommended, which means that there is a focus on including people with disabilities in mainstream services, as well as targeting them with specific services needed. There also must be efforts to improve the quality of services (e.g. through healthcare staff training) and enhance cost protection for people with disabilities (e.g. through social protection). A key challenge to changing UHC strategies to be more inclusive is the lack of evidence on what is needed and works, and more research is needed urgently on this topic.
Conclusions
It will be difficult to achieve UHC without a focus on people with disabilities. Changes made to improve coverage for people with disabilities will likely benefit a wider group, including older people, ethnic minorities, and people with short-term functional difficulties. Disability-inclusive strategies will therefore improve health system equity and ensure that we “
Leave no one behind
” as we move towards UHC.
Journal Article
Disability and Participation in Breast and Cervical Cancer Screening: A Systematic Review and Meta-Analysis
by
Kuper, Hannah
,
Ndong, Abdourahmane
,
Andiwijaya, Fahrin Ramadan
in
Bias
,
Breast cancer
,
Breast Neoplasms - diagnosis
2022
It is well established that access to preventative care, such as breast or cervical cancer screening, can reduce morbidity and mortality. Certain groups may be missed out of these healthcare services, such as women with disabilities, as they face many access barriers due to underlying inequalities and negative attitudes. However, the data have not been reviewed on whether women with disabilities face inequalities in the uptake of these services. A systematic review and meta-analysis were conducted to compare the uptake of breast and cervical cancer screening in women with and without disabilities. A search was conducted in July 2021 across four databases: PubMed, MEDLINE, Global Health, and CINAHL. Quantitative studies comparing the uptake of breast or cervical cancer screening between women with and without disabilities were eligible. Twenty-nine studies were included, all from high-income settings. One third of the 29 studies (34.5%, n = 10) were deemed to have a high risk of bias, and the remainder a low risk of bias. The pooled estimates showed that women with disabilities have 0.78 (95% CI: 0.72–0.84) lower odds of attending breast cancer screening and have 0.63 (95% CI: 0.45–0.88) lower odds of attending cervical cancer screening, compared to women without disabilities. In conclusion, women with disabilities face disparities in receipt of preventative cancer care. There is consequently an urgent need to evaluate and improve the inclusivity of cancer screening programs and thereby prevent avoidable morbidity and mortality.
Journal Article
Evidence and gap map of studies assessing the effectiveness of interventions for people with disabilities in low‐and middle‐income countries
2020
Background There are approximately 1 billion people in the world with some form of disability. This corresponds to approximately 15% of the world's population (World Report on Disability, 2011). The majority of people with disabilities (80%) live in low‐ and middle‐income countries (LMICs), where disability has been shown to disproportionately affect the most disadvantaged sector of the population. Decision makers need to know what works, and what does not, to best invest limited resources aimed at improving the well‐being of people with disabilities in LMICs. Systematic reviews and impact evaluations help answer this question. Improving the availability of existing evidence will help stakeholders to draw on current knowledge and to understand where new research investments can guide decision‐making on appropriate use of resources. Evidence and gap maps (EGMs) contribute by showing what evidence there is, and supporting the prioritization of global evidence synthesis needs and primary data collection. Objectives The aim of this EGM is to identify, map and describe existing evidence of effectiveness studies and highlight gaps in evidence base for people with disabilities in LMICs. The map helps identify priority evidence gaps for systematic reviews and impact evaluations. Methods The EGM included impact evaluation and systematic reviews assessing the effect of interventions for people with disabilities and their families/carers. These interventions were categorized across the five components of community‐based rehabilitation matrix; health, education, livelihood, social and empowerment. Included studies looked at outcomes such as, health, education, livelihoods, social inclusion and empowerment, and were published for LMICs from 2000 onwards until January 2018. The searches were conducted between February and March 2018. The EGM is presented as a matrix in which the rows are intervention categories (e.g., health) and subcategories (e.g., rehabilitation) and the column outcome domains (e.g., health) and subdomains (e.g., immunization). Each cell lists the studies for that intervention for those outcomes, with links to the available studies. Included studies were therefore mapped according to intervention and outcomes assessed and additional filters as region, population and study design were also coded. Critical appraisal of included systematic review was done using A Measurement Tool to Assess Systematic Reviews’ rating scale. We also quality‐rated the impact evaluation using a quality assessment tool based on various approaches to risk of bias assessment. Results The map includes 166 studies, of which 59 are systematic reviews and 107 impact evaluation. The included impact evaluation are predominantly quasiexperimental studies (47%). The numbers of studies published each year have increased steadily from the year 2000, with the largest number published in 2017.The studies are unevenly distributed across intervention areas. Health is the most heavily populated area of the map. A total of 118 studies of the 166 studies concern health interventions. Education is next most heavily populated with 40 studies in the education intervention/outcome sector. There are relatively few studies for livelihoods and social, and virtually none for empowerment. The most frequent outcome measures are health‐related, including mental health and cognitive development (n = 93), rehabilitation (n = 32), mortality and morbidity (n = 23) and health check‐up (n = 15). Very few studies measured access to assistive devices, nutrition and immunization. Over half (n = 49) the impact evaluation come from upper‐middle income countries. There are also geographic gaps, most notably for low income countries (n = 9) and lower‐middle income countries (n = 34). There is a fair amount of evidence from South Asia (n = 73) and Sub‐Saharan Africa (n = 51). There is a significant gap with respect to study quality, especially with respect to impact evaluation. There appears to be a gap between the framing of the research, which is mostly within the medical model and not using the social model of disability. Conclusion Investing in interventions to improve well‐being of people with disabilities will be critical to achieving the 2030 agenda for sustainable development goals. The EGM summarized here provides a starting point for researchers, decision makers and programme managers to access the available research evidence on the effectiveness of interventions for people with disabilities in LMICs in order to guide policy and programme activity, and encourage a more strategic, policy‐oriented approach to setting the future research agenda.
Journal Article