This article explores the issues of knowledge deficits of healthcare professionals in meeting the needs of people with IDD throughout the life span, and to identify factors that contribute to these deficits. Although statistics vary due to census results and the presence of a "hidden population," approximately 1%-3% of the global population identify as living with an intellectual or developmental disability. People with intellectual or developmental disability experience health inequities and confront multiple barriers in society, often related to the stigma of intellectual or developmental disability. Disparities in care and service are attributed to a lack of knowledge and understanding among healthcare providers about people with intellectual or developmental disability, despite their increased risk for chronic health problems. The near absence of educational programs in nursing both nationally and internationally contributes to this significant knowledge deficit. In addition, ethical considerations between paternalistic beneficence and idealized autonomy have resulted in a lack of clear direction in working with a population that is often ignored or exploited. Nurses who view people with intellectual or developmental disability as vulnerable without assessing or acknowledging their capabilities may err toward paternalism in an effort to "first do no harm." Likewise, nurses who fail to recognize the challenges and limitations faced by people with intellectual or developmental disability may not provide sufficient protections for a vulnerable person. People with intellectual or developmental disability are not binary, but rather complex individuals with a myriad of presentations. This article seeks to encourage a well-informed model of nursing care. Through an ethical lens, this article explores the nurse's ethical commitments in cases of victimization, access to care, decision making, and the provision of optimal end-of-life care for people with intellectual or developmental disability.
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http://dx.doi.org/10.1177/0969733019900310 | DOI Listing |
Biomolecules
January 2025
Institute of Neuroscience, Lobachevsky State University of Nizhny Novgorod, 23 Gagarin Ave., 603022 Nizhny Novgorod, Russia.
Developmental and epileptic encephalopathies (DEEs) are a group of neuropediatric diseases associated with epileptic seizures, severe delay or regression of psychomotor development, and cognitive and behavioral deficits. What sets DEEs apart is their complex interplay of epilepsy and developmental delay, often driven by genetic factors. These two aspects influence one another but can develop independently, creating diagnostic and therapeutic challenges.
View Article and Find Full Text PDFInt J Environ Res Public Health
January 2025
Department of Health Sciences, Faculty of Medicine, Lund University, P.O. Box 117, SE-221 00 Lund, Sweden.
Older adults with intellectual disabilities are not adequately prepared for ageing and show anxiety and uncertainty regarding the future. Therefore, the two-year educational intervention "Good Life in Old Age" was implemented to improve their understanding of ageing and enhance their well-being. This study aimed to explore the meaning of ageing during and after the intervention from the perspective of older adults with mild intellectual disability.
View Article and Find Full Text PDFEpilepsy Behav
January 2025
Epilepsy-Center Berlin-Brandenburg, Institute for Diagnostics of Epilepsy, Herzbergstr. 79 10365, Berlin, Germany; Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität and Humboldt-Universität zu Berlin, Department of Neurology, Augustenburger Platz 1 13353, Berlin, Germany. Electronic address:
Introduction: In people with intellectual disability (ID), prevalence of epilepsy can be over 40-times higher than in normally intelligent people, impacting quality of life (QoL) of those affected. Patients with ID are often excluded from clinical trials, resulting in limited evidence regarding treatment. This study aimed to evaluate effects of a comprehensive inpatient treatment program on seizure outcome and QoL and to identify predictive factors for improvement in these measures.
View Article and Find Full Text PDFStud Hist Philos Sci
January 2025
Munich Centre for the Philosophy of Science, Ludwig Maximilian University of Munich, Office R124, Ludwigstr. 31, D-80539, Munich, Germany. Electronic address:
This paper aims to analyze a specific way in which a scientific programme or area can, in Lakatosian terms, degenerate: namely, through a developmental process of intellectual inflation. Adopting a pluralist approach to the notion of scientific progress, we propose that the historical development of a particular scientific area can be analyzed as being intellectually inflationary during a bounded period of time if it has considerably increased its productive output (thus demonstrating productive progressive) while the overall semantic or epistemic value of those products have not improved in a significant fashion (thus lacking progress in a semantic or epistemic sense). Then, we apply this concept to thoroughly assess whether there have been some intellectually inflationary patterns in the development of (i) information-theoretical evolutionary biology in 1961-2023, and (ii) ensemblist non-equilibrium statistical mechanics in 1938-2023.
View Article and Find Full Text PDFEpilepsy Behav
January 2025
Division of Child Neurology, Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, AR, USA. Electronic address:
Lennox-Gastaut syndrome (LGS) is a severe developmental and epileptic encephalopathy marked by drug-resistant seizures and profound cognitive and behavioral impairments, with nearly 95% of individuals affected by moderate to severe intellectual disability. This review comprehensively explores the cognitive and behavioral impacts of current treatment options for LGS, including antiseizure medications (ASMs), neuromodulation strategies, the ketogenic diet, and surgical interventions. Given the limited availability of LGS-specific data for several ASMs, the evidence base is supplemented with findings from general epilepsy populations and individuals with epilepsy and intellectual disabilities.
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