Conducting qualitative research interviews among individuals with intellectual disabilities, including cognitive limitations and difficulties in communication, presents particular research challenges. One question is whether the difficulties that informants encounter affect interviews to such an extent that the validity of the results is weakened. This article focuses on voluntary informed consent and the specific challenges with the greatest effects on such interviews. The discussion shows that complementary and meaningful descriptions from informants imply the need to employ alternative strategies and methods that may, in other contexts, challenge the traditional understanding of what is acceptable in research.
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http://dx.doi.org/10.1177/1744629514523159 | DOI Listing |
Cureus
December 2024
Pharmacy, Punjab University College of Pharmacy, Lahore, PAK.
Berardinelli-Seip congenital lipodystrophy (BSCL), also known as congenital generalized lipodystrophy (CGL), is an exceptionally rare autosomal recessive disorder marked by a significant deficiency of adipose tissue throughout the body. This lack of adipose tissue, normally found beneath the skin and between internal organs, leads to impaired adipocyte formation and fat storage, causing lipids to accumulate in atypical tissues such as muscles and the liver. The extent of adipose tissue loss directly influences the severity of symptoms, which can include a muscular appearance, increased appetite, bone cysts, marrow fat depletion, acromegalic features, severe insulin resistance, skeletal muscle hypertrophy, hypertrophic cardiomyopathy, hepatic steatosis, hepatomegaly, cirrhosis, and intellectual disability.
View Article and Find Full Text PDFPrevention of sexual assault in intellectual disability (ID) begins with defining the problem. There are identified risk factors and barriers faced by adults with ID who experience sexual assault. Research shows that individuals with ID are victimized by sexual assault at rates substantially higher than the general population.
View Article and Find Full Text PDFInnov Clin Neurosci
December 2024
All authors are with Intelligent Automation and BioMed Genomics Laboratory, Faculty of Sciences and Techniques of Tangier, Abdelmalek Essaadi University in Tangier, Morocco.
Objective: Arab populations have a long tradition of consanguinity. In Morocco, consanguineous marriages are culturally favored. In this study, we assessed the effect of consanguinity on the occurrence of intellectual disability (ID) and investigated its association to education level and professional status in a series of Moroccan families.
View Article and Find Full Text PDFJ Family Med Prim Care
December 2024
Faculty of Medicine, King Abdulaziz University Hospital, Jeddah, Saudi Arabia.
The Kabuki syndrome (KS) is a rare congenital disease that has two different types, KS1 and KS2, with variant in epigenetic gene KMT2D and KDM6A, respectively. It is associated with multiple abnormalities such as (developmental delay, atypical facial features, cardiac anomalies, minor skeleton anomalies, genitourinary anomalies, and mild to moderate intellectual disability). This syndrome can lead to neonatal hypoglycemia that results from hyperinsulinemia and electrolyte abnormalities.
View Article and Find Full Text PDFBJPsych Open
January 2025
Institute of Health and Care Sciences, and Centre for Person-centred Care (GPCC) Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Background: Understanding the place of death for individuals with mental and behavioural disorders (MBDs) is essential for identifying disparities in healthcare access and outcomes, as well as addressing broader health inequities within this population.
Aims: To examine the place of death among individuals in Sweden with the underlying cause of death reported as a MBD and compare variations between diagnostic groups, as well as explore associations between place of death and individual, sociodemographic and clinical factors.
Method: This population-level analysis used death certificate data (gender, age, underlying cause of death and place of death) recorded between 2013 and 2019 and other national register data.
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