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Midwifery May 2021Fifteen percent of the world's population has some form of disability, the most common form being a physical disability. Ten percent of women with disabilities are of... (Review)
Review
OBJECTIVE
Fifteen percent of the world's population has some form of disability, the most common form being a physical disability. Ten percent of women with disabilities are of childbearing age; however, because women with disabilities are often deemed less likely to have children, accessibility to maternity care is limited. Women with disabilities experience problems during pregnancy and childbirth due to physical barriers and barriers to information, problems with communication and the attitude of providers. A recent World Health Organization statement calls for more action, dialogue, research and advocacy on disrespectful treatment during childbirth. To give substance to this, an overview of the experiences of women with a physical disability is essential. Therefore, the aim of this systematic review is to identify and provide an overview of reported maternity care experiences of women with physical disabilities, including sensory disabilities.
DESIGN
This systematic review was conducted using a meta-aggregation approach for synthesis and the steps of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement. The search strategy focused on qualitative studies in the databases PubMed, Embase and CINAHL. The Critical Appraisal Skills Programme checklist was used to evaluate methodological quality, and a best-evidence synthesis was performed.
FINDINGS
Of the 4,486 studies screened, ten were included. The methodological quality of the studies ranged from high to moderate. The results indicated that women experience barriers related to accessibility of facilities, adapted equipment, lack of knowledge, and healthcare providers' dismissals of their concerns and unwillingness to assist. In contrast, support has a positive influence on women's experiences.
KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE
There is evidence that women with physical disabilities continue to encounter barriers in accessing maternity care related to inaccessible care settings, lack of knowledge and the attitude of healthcare providers. Healthcare providers should be trained to be aware of women's special needs and to improve clinical practice.
Topics: Child; Disabled Persons; Female; Humans; Interviews as Topic; Maternal Health Services; Obstetrics; Parturition; Personal Satisfaction; Pregnancy; Qualitative Research
PubMed: 33636618
DOI: 10.1016/j.midw.2021.102938 -
Disability and Rehabilitation.... Oct 2020Many brain-computer interfaces (BCIs) for people with severe disabilities present stimuli in the visual modality with little consideration of the visual skills required... (Review)
Review
Many brain-computer interfaces (BCIs) for people with severe disabilities present stimuli in the visual modality with little consideration of the visual skills required for successful use. The primary objective of this tutorial is to present researchers and clinical professionals with basic information about the visual skills needed for functional use of visual BCIs, and to offer modifications that would render BCI technology more accessible for persons with vision impairments. First, we provide a background on BCIs that rely on a visual interface. We then describe the visual skills required for BCI technologies that are used for augmentative and alternative communication (AAC), as well as common eye conditions or impairments that can impact the user's performance. We summarize screening tools that can be administered by the non-eye care professional in a research or clinical setting, as well as the role of the eye care professional. Finally, we explore potential BCI design modifications to compensate for identified functional impairments. Information was generated from literature review and the clinical experience of vision experts. This in-depth description culminates in foundational information about visual skills and functional visual impairments that affect the design and use of visual interfaces for BCI technologies. The visual interface is a critical component of successful BCI systems. We can determine a BCI system for potential users with visual impairments and design BCI visual interfaces based on sound anatomical and physiological visual clinical science.Implications for RehabilitationAs brain-computer interfaces (BCIs) become possible access methods for people with severe motor impairments, it is critical that clinicians have a basic knowledge of the visual skills necessary for use of visual BCI interfaces.Rehabilitation providers must have a knowledge of objectively gathering information regarding a potential BCI user's functional visual skills.Rehabilitation providers must understand how to modify BCI visual interfaces for the potential user with visual impairments.Rehabilitation scientists should understand the visual demands of BCIs as they develop and evaluate these new access methods.
Topics: Brain-Computer Interfaces; Communication Aids for Disabled; Disabled Persons; Humans; User-Computer Interface; Vision Disorders
PubMed: 32476516
DOI: 10.1080/17483107.2020.1754929 -
CMAJ : Canadian Medical Association... Apr 2020
Review
Topics: Disabled Persons; Humans; Medicine; Prejudice
PubMed: 32392505
DOI: 10.1503/cmaj.191597 -
The Journals of Gerontology. Series B,... Oct 2019Late-life disability is highly dynamic but within-person short-term fluctuations have not been assessed previously. We analyze how substantial such late-life disability...
OBJECTIVES
Late-life disability is highly dynamic but within-person short-term fluctuations have not been assessed previously. We analyze how substantial such late-life disability fluctuations are and whether they are associated with time-to-death, long-term disability trajectories, frailty, and sociodemographics.
METHODS
Monthly survey data (Precipitating Events Project Study) on activities of daily living/instrumental activities of daily living (ADL/IADL) disability (0-9) in the last years of life from 642 deceased respondents providing 56,308 observations were analyzed with a two-step approach. Observation-level residuals extracted from a Poisson mixed regression model (first step), which depict vertical short-term fluctuations from individual long-term trajectories, were analyzed with a linear mixed regression model (second step).
RESULTS
Short-term disability fluctuations amounted to about one ADL/IADL limitation, increased in the last 4 years of life, and were closely associated with disability increases. Associations with frailty or sociodemographics characteristics were absent except for living alone.
DISCUSSION
Short-term disability fluctuations in late life were substantial, were linked to mortality-related processes, and represent a concomitant feature of disability increases in late life.
Topics: Activities of Daily Living; Age Factors; Aged; Aged, 80 and over; Connecticut; Disabled Persons; Female; Frail Elderly; Humans; Male; Mortality; Poisson Distribution; Socioeconomic Factors; Surveys and Questionnaires; Time Factors
PubMed: 31298701
DOI: 10.1093/geronb/gbz089 -
Research in Developmental Disabilities Nov 2022Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. While this is expected to negatively affect them, little is known...
BACKGROUND
Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. While this is expected to negatively affect them, little is known about the actual situation of persons with PIMD without parents.
AIM
To explore how parental roles are taken over by others, when persons with PIMD have outlived their parents, and how this affects the care and support for- and quality of life (QoL) of persons with PIMD.
METHODS
We interviewed seven siblings, and six professionals (N = 13) involved in the care and support for persons with PIMD without parents, and analysed the data thematically.
RESULTS
Siblings described a lack in family communication about the transition, yet felt responsible to fill the gap their parents left behind. Professional legal guardians felt professional responsibility towards their clients, yet described they had a limited assignment to fulfil. Professional caregivers underscored the importance of family in the care and support for persons with PIMD, while describing sometimes taking on extra responsibility for clients without parents.
CONCLUSIONS
Support aimed at facilitating a timely transfer of responsibilities, and at clarifying the content of these responsibilities, could better prepare both siblings and professionals to mitigate the impact of the loss of parents for persons with PIMD.
Topics: Deafness; Disabled Children; Disabled Persons; Humans; Intellectual Disability; Parents; Quality of Life; Siblings
PubMed: 36115069
DOI: 10.1016/j.ridd.2022.104334 -
International Journal For Equity in... Jan 2021Equity and inclusion are important principles in policy development and implementation. The aim of this study is to explore the extent to which equity and inclusion were...
BACKGROUND
Equity and inclusion are important principles in policy development and implementation. The aim of this study is to explore the extent to which equity and inclusion were considered in the development of Malawi's National Disability Mainstreaming Strategy and Implementation Plan.
METHODS
We applied an analytical methodology to review the Malawi's National Disability Mainstreaming Strategy and Implementation Plan using the EquIPP (Equity and Inclusion in Policy Processes) tool. The EquIPP tool assesses 17 Key Actions to explore the extent of equity and inclusion.
RESULTS
The development of the Malawi National Disability Mainstreaming Strategy and Implementation Plan was informed by a desire to promote the rights, opportunities and wellbeing of persons with disability in Malawi. The majority (58%) of the Key Actions received a rating of three, indicating evidence of clear, but incomplete or only partial engagement of persons with disabilities in the policy process. Three (18%) of the Key Actions received a rating of four indicating that all reasonable steps to engage in the policy development process were observed. Four (23%) of the Key Actions received a score five indicating a reference to Key Action in the core documents in the policy development process.
CONCLUSIONS
The development of disability policies and associated implementation strategies requires equitable and inclusive processes that consider input from all stakeholders especially those whose wellbeing depend on such policies. It is pivotal for government and organisations in the process of policy or strategy development and implementation, to involve stakeholders in a virtuous process of co-production - co-implementation - co-evaluation, which may strengthen both the sense of inclusion and the effectiveness of the policy life-cycle.
Topics: Community Participation; Disabled Persons; Health Policy; Humans; Malawi; Policy Making; Vulnerable Populations
PubMed: 33413443
DOI: 10.1186/s12939-020-01378-y -
Nursing ResearchSelf-care is a multicomponent set of capacities that influence beliefs about health and well-being.
BACKGROUND
Self-care is a multicomponent set of capacities that influence beliefs about health and well-being.
OBJECTIVES
We examined the relationship between self-care capacity, age, and disability status with two perceptions of well-being in a cohort of Medicare beneficiaries.
METHODS
The current study is part of a multisite research project to determine factors associated with cross-sectional and longitudinal morbidity and mortality trajectories observed in Medicare beneficiaries. Variable selection was informed by the health disparities and outcomes model. Using data from the 2013 Medicare Current Beneficiary Survey and logistic regression models, we determined associations between self-care capacity, including indicators of self-care ability and self-care agency and two perceptions of well-being. Participants were divided into four groups based on how they qualified for Medicare: (a) over 65 years of age, and below 65 years of age and disabled because of (b) physical or (c) mental disorder, or (d) disabled and could not be classified as physically or mentally disabled as the primary cause of eligibility.
RESULTS
Self-care ability limitations in activities of daily living (ADL), instrumental activities of living (IADL), and social activity participation were associated with both health perceptions. Those with physical disabilities reported more ADL and IADL limitations when compared with the other eligibility groups and were significantly more likely to have negative health perceptions. Those with serious mental illness were most likely to report the most severe IADL limitations. The over 65 years of age group reported less self-care incapacity than the other three eligibility types. Other components of self-care, including health literacy, agency, and health behaviors, significantly influenced perceptions of health. Women and people identifying as non-Whites were more likely to have negative health perceptions.
DISCUSSION
Self-care capacity is a complex construct, and its varied elements have differential relationships with perceptions of well-being. Those with physical disabilities reported more self-care limitations, poorer perceived health, and more health worries than the other groups. Still, there were different patterns of self-care capacities in the serious mental illness type-especially in IADL limitations. The study adds empirical evidence to previous research documenting inequities in health outcomes for women and non-Whites. Findings provide empirical support for the health disparities and outcomes model.
Topics: Activities of Daily Living; Age Factors; Aged; Aged, 80 and over; Cross-Sectional Studies; Disabled Persons; Female; Humans; Male; Medicare; Perception; Self Care; Surveys and Questionnaires; United States
PubMed: 34534184
DOI: 10.1097/NNR.0000000000000551 -
Journal of Thrombosis and Haemostasis :... Oct 2022
Topics: Disabled Persons; Humans; Research
PubMed: 36123573
DOI: 10.1111/jth.15851 -
Medical Care Sep 2020In 2003, national disability-associated health care expenditures (DAHE) were $398 billion. Updated estimates will improve our understanding of current DAHE.
BACKGROUND
In 2003, national disability-associated health care expenditures (DAHE) were $398 billion. Updated estimates will improve our understanding of current DAHE.
OBJECTIVE
The objective of this study was to estimate national DAHE for the US adult population and analyze spending by insurance and service categories and to assess changes in spending over the past decade.
RESEARCH DESIGN
Data from the 2013-2015 Medical Expenditure Panel Survey were used to estimate DAHE for noninstitutionalized adults. These estimates were reconciled with National Health Expenditure Accounts (NHEA) data and adjusted to 2017 medical prices. Expenditures for institutionalized adults were added from NHEA data.
MEASURES
National DAHE in total, by insurance and service categories, and percentage of total expenditures associated with disability.
RESULTS
DAHE in 2015 were $868 billion (at 2017 prices), representing 36% of total national health care spending (up from 27% in 2003). DAHE per person with disability increased from $13,395 in 2003 to $17,431 in 2015, whereas nondisability per-person spending remained constant (about $6700). Public insurers paid 69% of DAHE. Medicare paid the largest portion ($324.7 billion), and Medicaid DAHE were $277.2 billion. More than half (54%) of all Medicare expenditures and 72% of all Medicaid expenditures were associated with disability.
CONCLUSIONS
The share of health care expenditures associated with disability has increased substantially over the past decade. The high proportion of DAHE paid by public insurers reinforces the importance of public programs designed to improve health care for people with disabilities and emphasizes the need for evaluating programs and health services available to this vulnerable population.
Topics: Activities of Daily Living; Adult; Age Factors; Aged; Chronic Disease; Disabled Persons; Female; Health Expenditures; Humans; Male; Medicaid; Medicare; Middle Aged; Physical Functional Performance; Racial Groups; Residence Characteristics; Sex Factors; Social Work; Socioeconomic Factors; United States; Work Capacity Evaluation
PubMed: 32826747
DOI: 10.1097/MLR.0000000000001371 -
The American Journal of Geriatric... Mar 2021Assess a conceptual model linking caregiving factors to care recipient mortality in a large representative sample of older adults with disability.
OBJECTIVE
Assess a conceptual model linking caregiving factors to care recipient mortality in a large representative sample of older adults with disability.
DESIGN
Descriptive longitudinal study with 5-year mortality follow-up among older adults with disability. Baseline in person and telephone interviews/assessments of older adults with disability and their family caregivers carried out in 2011.
SETTING
Representative samples of older US population and their family caregivers.
PARTICIPANTS
US representative samples of older adults with disability aged 65 and over (National Health and Aging Study) and their family caregivers (National Study of Caregiving; www.nhats.org; N = 1,262).
MEASUREMENT
Controlling for known risk factors for mortality in older adults, including age, gender, race, education, socioeconomic status, disability, and cognitive status, we assess the role of three caregiving factors (depression, anxiety, and burden) and three mediating factors (care recipient depression, anxiety, and unmet needs for care) as predictors of care recipient mortality.
RESULTS
Caregiver burden, care recipient depression, and care recipient unmet needs are independent predictors of care recipient mortality.
CONCLUSION
Caregiving factors may play an important role in the survival of their care recipients. This is a relatively unexplored research area that calls for fine-grained studies capturing caregiver-care recipient health-related interactions over time.
Topics: Aged; Aged, 80 and over; Anxiety; Caregiver Burden; Caregivers; Depression; Disabled Persons; Female; Humans; Longitudinal Studies; Male; Prognosis; Stress, Psychological; Survival Rate
PubMed: 32718853
DOI: 10.1016/j.jagp.2020.06.025