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Neurology India 2020Many neurological conditions may result in long-term disability. The measures of prevalence and mortality vastly understate the disability they cause. In the Persons...
Many neurological conditions may result in long-term disability. The measures of prevalence and mortality vastly understate the disability they cause. In the Persons with Disabilities Act 1995 (equal opportunities, protection of rights, and full participation), neurological conditions are ignored. Although Indian Disability Evaluation and Asessment Scale (IDEAS), which assesses psychiatric conditions, does include dementia as one of the neurodegenerative conditions. Additionally, according to the global burden of disease report, 33% of years lived with neurological disability and 13% of disability-adjusted life years (DALYs) are due to neurological and psychiatric disorders. In 2001, the World Health Organization (WHO) established a new definition of disability, declaring it an umbrella term with the following three major components; 1) impairments: problems in body function or structure, 2) activity limitations: difficulties encountered by a person in executing a task or action, and 3) participation restrictions: problems of involvement in life situations experienced by a person. Hence, an attempt was made to rectify the above concerns. To address the above mentioned concerns, we think that there is a need of a comprehensive format for neurological disabilities assessment which would also include objective neuropsychological assessments. As future directions, national level meetings are required to formulate 'Indian Standard Track for Assessing Neurological Disability' (I-STAND) and uniform guidelines for disability assessment in 'chronic neurological conditions' with a special focus on "neuropsychological disability".
Topics: Chronic Disease; Disability Evaluation; Disabled Persons; Female; Humans; India; Male; Nervous System Diseases; Prevalence; Quality-Adjusted Life Years
PubMed: 32129266
DOI: 10.4103/0028-3886.279709 -
Physical Medicine and Rehabilitation... Aug 2019Accuracy in measuring function related to one's ability to work is central to public confidence in a work disability benefits system. In the United States, national...
Accuracy in measuring function related to one's ability to work is central to public confidence in a work disability benefits system. In the United States, national disability programs are challenged to adjudicate millions of work disability claims each year in a timely and accurate manner. The Work Disability Functional Assessment Battery (WD-FAB) was developed to provide work disability agencies and other interested parties a comprehensive and efficient approach to profiling a person's function related to their ability to work. The WD-FAB is grounded by the International Classification of Functioning, Disability, and Health conceptual framework.
Topics: Disabled Persons; Humans; Mental Health; Motor Activity; Return to Work; United States; Work Capacity Evaluation
PubMed: 31227131
DOI: 10.1016/j.pmr.2019.03.004 -
International Journal of Environmental... Apr 2023The widely accepted model of prevention, including primary, secondary and tertiary prevention, focuses predominantly on diseases. The WHO provides a comprehensive model...
The widely accepted model of prevention, including primary, secondary and tertiary prevention, focuses predominantly on diseases. The WHO provides a comprehensive model of health conceptualized on the basis of the International Classification of Functioning, Disability and Health (ICF). This paper develops a conceptual description of prevention aimed at functioning on the basis of the ICF model. Starting from the ICF-based conceptual descriptions of rehabilitation as a health strategy, a conceptual description of functioning prevention has been developed. Prevention aiming at functioning is the health strategy that applies approaches to avoid or reduce risks of impairing bodily functions and structures, activity limitations and participation restrictions; to strengthen the resources of the person; to optimize capacity and performance; to prevent impairments of bodily functions and structures; to prevent activity limitations and participation restrictions; to reduce contextual risk factors and barriers, including personal and environmental factors; to promote and strengthen contextual facilitators, with the goal of enabling people with impairments and people at risk of disability; and to maintain or improve the level of functioning in interactions with the environment. The proposed concept widens the scope of prevention to all aspects of functioning, including contextual factors.
Topics: Humans; Disability Evaluation; Disabled Persons; Medicine; International Classification of Diseases; Activities of Daily Living; International Classification of Functioning, Disability and Health
PubMed: 37048012
DOI: 10.3390/ijerph20075399 -
Trials Mar 2023Underrepresentation of disabled groups in clinical trials results in an inadequate evidence base for their clinical care, which drives health inequalities. This study... (Review)
Review
INTRODUCTION
Underrepresentation of disabled groups in clinical trials results in an inadequate evidence base for their clinical care, which drives health inequalities. This study aims to review and map the potential barriers and facilitators to the recruitment of disabled people in clinical trials to identify knowledge gaps and areas for further extensive research. The review addresses the question: 'What are the barriers and facilitators to recruitment of disabled people to clinical trials?'.
METHODS
The Joanna Briggs Institute (JBI) Scoping review guidelines were followed to complete the current scoping review. MEDLINE and EMBASE databases were searched via Ovid. The literature search was guided by a combination of four key concepts from the research question: (1) disabled populations, (2) patient recruitment, (3) barriers and facilitators, and (4) clinical trials. Papers discussing barriers and facilitators of all types were included. Papers that did not have at least one disabled group as their population were excluded. Data on study characteristics and identified barriers and facilitators were extracted. Identified barriers and facilitators were then synthesised according to common themes.
RESULTS
The review included 56 eligible papers. The evidence on barriers and facilitators was largely sourced from Short Communications from Researcher Perspectives (N = 22) and Primary Quantitative Research (N = 17). Carer perspectives were rarely represented in articles. The most common disability types for the population of interest in the literature were neurological and psychiatric disabilities. A total of five emergent themes were determined across the barriers and facilitators. These were as follows: risk vs benefit assessment, design and management of recruitment protocol, balancing internal and external validity considerations, consent and ethics, and systemic factors.
CONCLUSIONS
Both barriers and facilitators were often highly specific to disability type and context. Assumptions should be minimised, and study design should prioritise principles of co-design and be informed by a data-driven assessment of needs for the study population. Person-centred approaches to consent that empower disabled people to exercise their right to choose should be adopted in inclusive practice. Implementing these recommendations stands to improve inclusive practices in clinical trial research, serving to produce a well-rounded and comprehensive evidence base.
Topics: Humans; Disabled Persons; Patient Selection; Research Design
PubMed: 36890505
DOI: 10.1186/s13063-023-07142-1 -
European Journal of Physical and... Apr 2017Since its launch in 2001, relevant international, regional and national PRM bodies have aimed to implement the International Classification of Functioning, Disability... (Review)
Review
Practice, science and governance in interaction: European effort for the system-wide implementation of the International Classification of Functioning, Disability and Health (ICF) in Physical and Rehabilitation Medicine.
Since its launch in 2001, relevant international, regional and national PRM bodies have aimed to implement the International Classification of Functioning, Disability and Health (ICF) in Physical and Rehabilitation Medicine (PRM), whereby contributing to the development of suitable practical tools. These tools are available for implementing the ICF in day-to-day clinical practice, standardized reporting of functioning outcomes in quality management and research, and guiding evidence-informed policy. Educational efforts have reinforced PRM physicians' and other rehabilitation professionals' ICF knowledge, and numerous implementation projects have explored how the ICF is applied in clinical practice, research and policy. Largely lacking though is the system-wide implementation of ICF in day-to-day practice across all rehabilitation services of national health systems. In Europe, system-wide implementation of ICF requires the interaction between practice, science and governance. Considering its mandate, the UEMS PRM Section and Board have decided to lead a European effort towards system-wide ICF implementation in PRM, rehabilitation and health care at large, in interaction with governments, non-governmental actors and the private sector, and aligned with ISPRM's collaboration plan with WHO. In this paper we present the current PRM internal and external policy agenda towards system-wide ICF implementation and the corresponding implementation action plan, while highlighting priority action steps - promotion of ICF-based standardized reporting in national quality management and assurance programs, development of unambiguous rehabilitation service descriptions using the International Classification System for Service Organization in Health-related Rehabilitation, development of Clinical Assessment Schedules, qualitative linkage and quantitative mapping of data to the ICF, and the cultural adaptation of the ICF Clinical Data Collection Tool in European languages.
Topics: Disability Evaluation; Disabled Persons; Europe; Global Health; Humans; International Agencies; Physical and Rehabilitation Medicine; Societies, Medical
PubMed: 27882907
DOI: 10.23736/S1973-9087.16.04436-1 -
Life Sciences, Society and Policy Jun 2021People with disabilities face attitudinal barriers including prejudice, stereotypes, and low expectations. Many young people without disabilities may doubt that people...
People with disabilities face attitudinal barriers including prejudice, stereotypes, and low expectations. Many young people without disabilities may doubt that people with disabilities can be fulfilling partners in any loving adult relationship. The objective of the present research was to assess the willingness of non-disabled youth to engage in conjugal relationships with persons with disabilities in Wolaita Sodo town, Ethiopia. Both descriptive and explanatory study designs were used and quantitative data were collected. A self-administered questionnaire was designed and distributed to randomly selected 403 (202 females & 201 males) unmarried youth. Data analysis was undertaken using SPSS software in which both descriptive and inferential statistical techniques were utilized for data presentation. The result showed that most (85.5%) of the young people without disabilities participated in the survey were not willing to have any type of personal relationships with persons with disabilities and the main reason for 44.2% of these respondents being the fear of reaction from family members. Furthermore, it was found that the level of willingness of youth without disabilities to engage in romantic love and marital relationships was not influenced by the socio-economic status of people with disabilities. Moreover, the result of binary logistic regression analysis showed that the willingness of respondents to have marital and romantic love relationship with persons with disabilities is significantly associated to the sex (OR = 2.376; P < 0.05; 95%CI = 1.210, 4.664), raised-up area (OR = 2.512; P < 0.01; 95%CI = 1.319, 4.783), age (OR = 2.886; P < 0.05; 95%CI = 1.012, 8.228) and the presence of person with disability in the family (OR = 3.945; P < 0.01; 95%CI = 1.648, 9.442) of respondents. The findings of the present research demonstrate that people with disabilities have continued to face stereotypes and discriminations. Such stereotypes extend to assuming them as asexual and unfit to carryout roles that arise from love or marital relationships which violates the rights of PWDs to form their own family and have children. It is therefore, important to raise the awareness of young people about the differences between disability and sexuality and that physical disability has nothing to do with sexuality and relationship formation.
Topics: Adolescent; Adult; Child; Disabled Persons; Female; Humans; Love; Male; Marriage; Sexual Behavior; Sexuality
PubMed: 34154669
DOI: 10.1186/s40504-021-00114-w -
AMA Journal of Ethics Jul 2021When disability is defined by behavior, researchers and clinicians struggle to identify appropriate measures to assess clinical progress. Some choose the reduction or...
When disability is defined by behavior, researchers and clinicians struggle to identify appropriate measures to assess clinical progress. Some choose the reduction or elimination of diagnostic traits, implicitly defining typical appearance as the goal of service provision. Such an approach often interferes with more meaningful, person-centered goals; causes harm to people with disabilities; and is unnecessary for dealing with traits that are intrinsically harmful or personally distressing, such as self-injury. Disability stakeholders should reevaluate outcome measures that seek to eliminate disability-related traits that are stigmatized but not harmful. Using autism and the emergent neurodiversity movement as a case study, this article explores ethical challenges in selecting outcome measures in behaviorally defined disability diagnoses.
Topics: Autistic Disorder; Disabled Persons; Humans; Outcome Assessment, Health Care
PubMed: 34351268
DOI: 10.1001/amajethics.2021.569 -
Sociology of Health & Illness Feb 2022When conceptualising health and wellbeing among disabled people, the experience of internalised ableism must be considered. In this article, we argue that internalised...
When conceptualising health and wellbeing among disabled people, the experience of internalised ableism must be considered. In this article, we argue that internalised ableism is indeed a health and wellbeing issue that materialises in numerous complex psychological, social and physical consequences. For theoretical grounding, we utilise critical disability studies, feminist theorising about solidarity and disability activists' concept of 'disability justice'. We draw on data from focus-group interviews with disabled young people, comprising ten men and eleven women, with different impairment types. The focus-group discussions revolve around various aspects of their wellbeing and participation in society, and possible and actual threats to the wellbeing of disabled children and young people in general. The analysis reflects various negative effects of internalised ableism on the identity, health and wellbeing of disabled young people. Family support, access to safer spaces and positive peer interactions are factors defining how internalised ableism develops, is maintained or defied. Peer support and solidarity are strong indicators of promoting healing from internalised ableism. We argue that disability scholars need to address the health and wellbeing of disabled people in an ableist world.
Topics: Adolescent; Child; Disabled Persons; Female; Focus Groups; Humans; Male; Social Discrimination
PubMed: 35034362
DOI: 10.1111/1467-9566.13425 -
American Family Physician Jan 2015According to the World Health Organization, more than 1 billion persons worldwide have a disability. In the United States, more than 56 million American workers have...
According to the World Health Organization, more than 1 billion persons worldwide have a disability. In the United States, more than 56 million American workers have some form of disability; of these, more than 38 million persons have a severe disability. Blacks and Hispanics are among the groups with the highest disability rates, as well as older patients. Conditions that most often lead to disability include arthritis, back or spine problems, and heart conditions. Common limitations include the inability to walk three city blocks or to climb a flight of stairs. Patients with a disability experience health disparities and barriers to appropriate health care. Disability impacts family members and caregivers, as well as patients. Impairment, disability, and handicap are key terms that physicians must understand to properly evaluate patients and make appropriate recommendations. Social Security Disability Insurance and workers' compensation are the two largest disability programs in the United States. The U.S. Department of Veterans Affairs provides disability benefits for veterans, and private disability insurance may be provided by the employer or purchased by the employee. Family physicians can perform the initial evaluation, consult appropriate subspecialists, complete the necessary paperwork, and answer questions from the patient, employer, or disability agency.
Topics: Disability Evaluation; Disabled Persons; Humans; Physicians, Family
PubMed: 25591211
DOI: No ID Found -
Disability and Health Journal Apr 2020The multidisciplinary model (MCM) is described as one that utilizes skills and experience from practitioners belonging to various disciplines, each treating patients...
The multidisciplinary model (MCM) is described as one that utilizes skills and experience from practitioners belonging to various disciplines, each treating patients from a specific clinical perspective. The Spina Bifida Association (SBA) supports and recommends that clinical care for people with Spina Bifida (SB) be provided in specialty clinics of which the MCM is an example; that care be coordinated; and that there be a plan for transitional care. This paper explores the challenges the MCM faces with a transitioning and aging population in a care system that calls for a positive patient experience, engaged health care professionals, desired outcomes, with consideration of cost.
Topics: Adolescent; Adult; Attitude of Health Personnel; Child; Child, Preschool; Delivery of Health Care; Disabled Persons; Female; Health Personnel; Humans; Infant; Male; Middle Aged; Patient Care Team; Philosophy, Medical; Practice Guidelines as Topic; Spinal Dysraphism; United States; Young Adult
PubMed: 31928964
DOI: 10.1016/j.dhjo.2019.100883