Search Results (9)

With the enforcement of the Act for Eliminating Discrimination against Persons with Disabilities, the provision of reasonable accommodations in pharmacies has become mandatory in Japan. This study aimed to develop and validate the effectiveness of a training program to improve pharmacists’ ability to assist people with intellectual disabilities. The educational staff of one chain pharmacy company announced the program, and pharmacists at this company were invited to participate in the program. A 90 min online training was conducted with 15 pharmacists. The session included a lecture on reasonable accommodations and small group discussions (SGD). Before and after the training, participants answered an online survey about 1. Their basic attributes (number of years of experience and awareness of reasonable accommodations and constructive dialogue); 2. Their confidence in providing medication guidance to people with intellectual disabilities (10-point scale); and 3. Possible accommodations that could be provided by pharmacies. Training resulted in an increase in the average score for question 2 from 3.93 to 5.87. In addition, an increase in the number of keywords within the free-text descriptions and in the number of co-occurrences within the responses of mentions of possible accommodations in pharmacies was observed. Despite the shortness of the training, it changed the participants’ awareness about accommodations for people with intellectual disabilities. Further study is needed to enhance the content and evaluate changes in practice. Full article

Background: An increasing amount of evidence, derived from both human epidemiological studies and animal research, suggests that exposure to maternal obesity in utero is linked to adverse neurodevelopmental outcomes in the offspring. These can include attention deficit hyperactivity disorder, autism spectrum disorders, intellectual disability, and cerebral palsy. Methods: A thorough search in Medline/PubMed and Google Scholar databases was performed by two independent reviewers in order to investigate the link between the exposure to maternal obesity and neurodevelopmental outcomes in the offspring. A list of keywords, including maternal obesity, maternal overweight, maternal diet, neurodevelopment, and neuropsychiatric disorders, was used in the search algorithm. Results: The existing evidence regarding the potential mechanisms through which maternal obesity may impact offspring neurodevelopment and programming, such as inflammation, hormone dysregulation, alterations to the microbiome, and epigenetics, as well as evidence from animal studies, was summarized in this narrative review. Conclusions: Maternal obesity seems to be overall associated with various neuropsychiatric and neurodevelopmental disorders. However, more robust data from future studies are needed to establish this association, which will take into account the role of potential confounders such as genetic factors and gene–environment interactions. Full article

Background/Objectives: Fragile X syndrome (FXS) is one of the most common genetic causes of intellectual developmental disability and autism spectrum disorder (ASD), second only to Down’s syndrome and associated with a broad range of neurodevelopmental, behavioral, and psychiatric challenges. FXS may be present in infants or young children with characteristic dysmorphic features, developmental delays, and behavioral challenges. The diagnosis of FXS is confirmed by the molecular genetic testing of the FMR1 gene encoding fragile X messenger RNA-binding protein (FMRP), involved in regulating the translation of multiple mRNAs which play a key role in neuronal development and synaptic plasticity. Understanding the genetic cause, pathophysiology, and natural history of FXS is crucial for identifying commonly associated comorbidities, instituting effective therapeutic interventions, and improving long-term outcomes. Methods: This systematic review employed a comprehensive literature search using multiple electronic databases including PubMed, Web of Science, and Scopus with keywords related to fragile X syndrome, lifespan, genetics, neurodevelopmental, behavioral, and psychiatric disorders. Results: FXS is associated with an increased risk for specific neurodevelopmental, or psychiatric disorders. Symptoms and challenges associated with FXS vary based on multiple factors, including genetic differences, age, sex, comorbid conditions, various environmental influences, the availability of support, and opportunities for therapeutic interventions. Knowledge of these associations helps guide caregivers and clinicians in identifying potentially treatable conditions that can help to improve the lives of affected patients and their families. Conclusions: The focus of this article is to explore and describe the genetic underpinnings of FXS, identify associated developmental, behavioral, and psychiatric conditions over the lifespan, and provide a review of clinical features, therapeutic interventions including investigational treatments, and current research updates. Full article

Intellectual disability (ID) encompasses diverse challenges that affect daily life and health. Sedentary behaviors, prevalent in this population, contribute to alarming health concerns, notably obesity and musculoskeletal issues. This review examines the role of physical activity (PA) interventions in addressing these health challenges among children and adolescents with ID. This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The search was conducted in the Cochrane Library, PubMed, Scopus, and SPORTDiscus databases, using specific keywords aligned with the PICO framework (population, intervention, comparison, and outcome). From January 2013 to October 2024, a total of 5236 studies were identified, of which 17 met the inclusion criteria for this review according to PRISMA procedures. Randomized controlled trials (RCTs) focusing on the impact of PA on body composition, physical fitness, bone health, metabolic indicators, and overall quality of life were included. The study cohort consisted of individuals aged 13–24 diagnosed with ID. The findings consistently highlight the positive relationship between PA interventions and improved health markers in individuals with ID. Diverse PA interventions, ranging from strength training to high-intensity exercises, demonstrated significant improvements in body composition, physical fitness, and bone mineral density. Notably, higher-frequency PA programs (minimum three sessions per week) yielded more substantial benefits. This review underscores the potential of adapted PA interventions to address health concerns and enhance the quality of life for individuals with ID. Further comprehensive research is needed to establish standardized guidelines for effective PA interventions in this population. Full article

(1) Background: Identification of typical behavioral manifestations in patients with DEAD-Box Helicase 3 X-linked gene (DDX3X) variants plays a crucial role in accurately diagnosing and managing the syndrome. The objective of this paper was to carry out a review of medical and public databases and assess the behavioral features of the DDX3X syndrome (DDX3X), with a particular focus on psycho-pathological symptoms. (2) Methods: An extensive computerized search was conducted in various databases, including PubMed, Medline Complete, Science Direct, Scopus, and Web of Science. Specific keywords and Medical Subject Headings were used to ensure the inclusion of relevant studies. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were applied to assess the methodological quality of the manuscripts. (3) Results: Only nine papers out of the 272 assessed met the inclusion criteria. These articles revealed various psycho-pathological manifestations in patients with the DDX3X syndrome. Intellectual disability (ID) or developmental disability (DD), speech delay, autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), generalized anxiety disorder (GAD), self-injurious behaviors (SIBs), sensory symptoms and sleep disturbance were demonstrated to be the most common psycho-pathological behavior manifestations. (4) Conclusions: Patients with the DDX3X syndrome manifest a wide spectrum of psycho-pathological symptoms. A comprehensive investigation of these symptoms in patients is essential for early diagnosis and effective therapy. Full article

Many stroke survivors suffer with varying degrees of disability and require assistance. Family members commonly act as informal caregivers, caring for these stroke survivors and ensuring care adherence. However, many caregivers reported a poor quality of life and physical and psychological distress. Due to these issues, multiple studies have been conducted to understand the experience of caregivers, the outcomes of caregiving, and interventional studies among caregivers. This study aims to explore the intellectual landscape of studies on stroke caregivers using bibliometric analysis. Studies with “stroke” and “caregiver” terms in the title were extracted from the Web of Sciences (WOS) database. The resulting publications were analysed using the ‘bibliometrix’ package in R. There were 678 publications analysed, dating from 1989 to 2022. The USA has the highest number of publications (28.6%), followed by China (12.1%) and Canada (6.1%). The most productive institution, journal and author were The University of Toronto (9.5%), ‘Topics in Stroke Rehabilitation’ journal (5.8%) and Tamilyn Bakas (3.1%), respectively. Co-occurrences keywords analysis revealed mainstream research on stroke survivors, burden, quality of life, depression, care, and rehabilitation, reflecting the timeless hotspot in the field. This bibliometric analysis helps us understand the current state of stroke caregiver research and its recent developments. This study can be used to evaluate research policies and promote international cooperation. Full article

People with Intellectual and Developmental Disabilities (IDDs) are disproportionately vulnerable to poorer oral health due to their complex needs specifically sensory processing difficulties. This leads to increased maladaptive behaviours and psychophysiology responses of dental anxiety amplified by the overstimulating aspects of the dental environment. Although, there is a growing body of evidence to suggest that sensory adaptions are an effective strategy for individuals with IDDs in a wide range of settings, there is a lack of high-quality evidence detailing the effectiveness in a dental setting. The objective of this review is to assess the effectiveness of sensory adaptive dental environments (SADE) to reduce dental anxiety, corresponding negative behaviours and psychophysiology responses in children and young people with IDDs. The systematic review will include all Randomized Controlled Trials (RCTs) that investigate the effectiveness of SADE compared to control (no intervention), waitlist or usual care (regular dental environment) to reduce dental anxiety and the corresponding negative behaviours and psychophysiology responses in children and young people (upto the ages of 24 years) with IDDs. This review will be conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Databases including MEDLINE (Ovid), The Cochrane Library, Embase, Google Scholar, Web of Science and OT Seeker will be searched using appropriate keywords. Additionally, citation searching will be conducted. Screening based on titles and abstracts will be done after de-duplication, followed by full-text reading for selection based on the inclusion criteria. Data extracted from the included studies will be tabulated and assessed for risk of bias. If applicable, a meta-analysis of the pooled data will be conducted. The review is registered with PROSPERO (CRD42022322083). Full article

The objective of this systematic review is to make an inventory of the representations of the professionals of specialized institutions on the sexuality of persons with intellectual disabilities. The scientific studies were identified according to the PRISMA protocol using 18 databases, with keywords on sexuality and parenthood. Studies were reviewed through a methodological assessment and then a thematic analysis. Twenty-four studies were reviewed and three themes were identified: professionals’ representations of gender, sexuality, and consent; professionals’ perceptions of their role in supporting people’s sexual lives; and the ways in which professionals construct representations of people’s sexual lives. This corpus highlights deep paradoxes in the representations of professionals concerning the socio-affective needs and sexuality of people with intellectual disabilities, creating what we could define as a “system of incompatibility” and leading to difficulties in positioning. Support is still too random and subject to control logics in the name of protecting users, who are perceived as vulnerable. Training and new ways of teamwork appear to be central to supporting the evolution of the representations and practices of professionals. Future research anchored in practices and involving users as well as professionals is necessary to better understand the paradoxical aspects of professionals’ representations and to draw alternative ways of constructing these representations. Full article

Pain management necessitates assessment of pain; the gold standard being self-report. Among individuals with intellectual and developmental disabilities (IDD), self-report may be limited and therefore indirect methods for pain assessment are required. A new, internationally agreed upon and user-friendly observational tool was recently published—the Pain Assessment in Impaired Cognition (PAIC-15). The current study’s aims were: to test the use of the PAIC-15 in assessing pain among people with IDD and to translate the PAIC-15 into Arabic for dissemination among Arabic-speaking professionals. Pain behavior following experimental pressure stimuli was analyzed among 30 individuals with IDD and 15 typically developing controls (TDCs). Translation of the PAIC followed the forward–backward approach; and reliability between the two versions and between raters was calculated. Observational scores with the PAIC-15 exhibited a stimulus–response relationship with pressure stimulation. Those of the IDD group were greater than those of the TDC group. The overall agreement between the English and Arabic versions was high (ICC = 0.89); single items exhibited moderate to high agreement levels. Inter-rater reliability was high (ICC = 0.92). Both versions of the PAIC-15 are feasible and reliable tools to record pain behavior in individuals with IDD. Future studies using these tools in clinical settings are warranted. Full article