Journal of Intellectual Disabilities最新文献

Aims: Challenging behaviour in individuals with intellectual disabilities affects quality of life and often results in antipsychotic use, despite guidelines recommending non-drug approaches as the first line. This study explores healthcare team perspectives on managing challenging behaviour, barriers to reducing antipsychotic overprescription, and possible solutions. Methods: A cross-sectional qualitative study using thematic analysis of an online team discussion and survey. Findings were used to develop a driver diagram of proposed strategies. Results: Three themes were identified: (1) varied views on current prescribing practices, with concerns about overuse and limited awareness of guidance; (2) key barriers including staffing shortages, reluctance to reduce medication, poor communication, lack of structured reviews, and absence of outcome measures; and (3) proposed solutions such as family involvement, regular reviews, improved outcome tracking, staff education, and clear care pathways. Conclusion: Addressing system-level barriers through coordinated team-based approaches may reduce reliance on antipsychotics and improve care.

Background: Emotional development in individuals with intellectual disabilities follows distinct trajectories; however, few psychometrically-sound tools target this dimension. Aims: This study examined the psychometric properties of the French version of the Scale of Emotional Development-Short (SED-S) in youth and adults with intellectual disabilities. Methods: A multicentre cohort of 170 participants with mild-to-profound intellectual disabilities was assessed. Internal consistency (McDonald's ω) and inter-rater reliability (intraclass correlation coefficient, ICC) were evaluated. Construct validity was tested using confirmatory factor analysis. Associations with intellectual disabilities severity, adaptive functioning, and age were explored using correlations and nonparametric tests. Results: The SED-S demonstrated high internal consistency (ω = 0.933) and strong inter-rater reliability (ICC = 0.851). A one-factor model supported construct validity. SED-S scores were significantly related to intellectual disability severity and autism spectrum disorder diagnosis but not age. Conclusion: The French SED-S is a reliable and valid tool for assessing emotional development in French-speaking individuals with intellectual disabilities.

Introduction: People with Down syndrome (PwDS) have a substantially increased risk of developing Alzheimer's dementia. This can lead to challenges in medical care. To identify these challenges, a scoping review was conducted. Methods: The search consisted of a systematic database search and a structured search on relevant institutional websites. After inclusion, articles were reviewed for deficits and barriers in health care provision for PwDS and dementia. Results were discussed and systematized in a workshop. Results: Of 3,679 articles identified, 23 were included by systematic search and two by structured search. Finally, results were systematized in two dimensions: (1) Medical areas where problems occurred (diagnostics, therapy, research, and overarching issues) and (2) Stakeholders affected (patients, caregivers, and medical or other service providers). Conclusions: Since multiple deficits and barriers were identified in the medical care for PwDS and dementia, it is crucial to improve healthcare provision for this vulnerable group.

New academic researchers need resources to effectively learn how to conduct inclusive research and meaningfully engage co-researchers with intellectual and developmental disabilities. This rapid review aims to address: What online resources are available in 2024 for new academic researchers seeking to learn about inclusive research methods and what is the quality of those resources based on a set of criteria for assessing quality in inclusive research? A search of the literature was conducted. In total, 11 resources were included. A checklist with 11 items was developed to assess the quality of these resources. Results suggest a range of checklist criteria met among the resources. Among the 11 checklist items, some were consistently met while others were frequently overlooked. This study brings to light a need for addressing how senior academic researchers make resources for complex research methods available to others. Additionally, it demonstrates the importance of developing comprehensive, self-paced training with implementation support.

Research on the lived experience of Canadian parents with intellectual disabilities involved in child protection is limited, particularly inclusive research with parents with intellectual disabilities involved in Canada's changing child protection system. This inclusive study was done in collaboration with a co-researcher with intellectual disabilities who had lived experience as a parent. Thirteen parents from three Canadian regions participated in semistructured interviews about their involvement in child protection. Four major themes emerged in the findings: 1) key supports that contributed to positive outcomes; 2) parents' attitudes toward child protection agencies and perceived attitudes about themselves; 3) systemic barriers impacting accessibility and the child protection experience; and 4) parents' advice to other parents and professionals in child protection. This study provides a promising picture of child protection agencies as a key support despite existing barriers. Implications for social service providers are offered and areas for further exploration are discussed.

In the Kahramanmaraş earthquake on February 6, 2023, which was described as the most severe earthquake on land worldwide and the disaster of century, the loss of life and material losses reached serious levels. In this study, it was aimed to examine the experiences of 21 individuals diagnosed with autism spectrum disorder and intellectual disabilities affected by the Kahramanmaraş earthquake by interviewing their families regarding this process. Fifteen parents of one/more children diagnosed with intellectual disability/autism spectrum disorder participated in this study, which was conducted with a phenomenological design, one of the qualitative research designs. These themes are (a) the impact of the earthquake on the child with autism spectrum disorder/intellectual disability, (b) the impact of the earthquake on the parents, (c) difficulties experienced and (d) requirements. When the themes are examined, parents state that their children face serious physical, psychological and educational harm, their behavioral problems increase due to trauma they experience.

This qualitative study was conducted to identify how being a sibling of a child with intellectual disabilities is defined for the child, its implications from the perspective of mothers. Data were collected through in-depth individual interviews using a "Semi-structured interview form" between November 2023 and January 2024 with 14 mothers of children aged 12-18 who were studying in seven special education and rehabilitation centres in Türkiye. The semi-structured interview form included questions such as "Can you tell us about the relationship between your child with intellectual disability and his/her sibling?" Main themes and sub-themes were developed using thematic analysis. Four main themes were identified from the data through thematic analysis: (1) A special relationship (2) The need to be perfect (3) Guilt and shame (4) Restriction. The findings revealed both positive and negative aspects of being a sibling of children with intellectual disabilities from the mothers' perspective.

We present findings from our study, which examined whether ability to identify Down syndrome and autism was linked to participants' willingness to maintain social contact with individuals with the respective conditions. Additionally, we explored whether viewers and non-viewers of Parenthood and Glee, television shows featuring a character with autism and Down syndrome respectively, differed in their awareness, beliefs regarding causes and interventions, and desire to maintain social proximity with individuals with these conditions. Participants completed an online survey, which included vignettes based on Max, the character with autism from Parenthood and Becky, the character with Down syndrome from Glee as well as the adapted Intellectual Disabilities Literacy Scale. Based on 300 responses, key differences were noted in the hypothesized direction on the assessed variables (symptom recognition, causal beliefs, and treatment beliefs) between Parenthood and Glee viewers and non-viewers. Findings are discussed in the context of practical implications and methodological limitations.

There are concerns about parents' parenting skills with intellectual disabilities. However, it is reported that parents with intellectual disabilities show good enough parenting if they are supported effectively and in line with their needs. This scoping review identifies and critically evaluates preventive interventions for parents with intellectual disabilities and a cumulation of multiple and complex problems that aim to prepare them for good enough parenting. Six interventions were identified, with preliminary to strong indications of effectiveness. Although none of the interventions focused on all conditions of good enough parenting and only one intervention incorporated all seven key elements to effectively work with parents with intellectual disabilities, the limited evidence on the effectiveness of these interventions suggests that significant and societally relevant effects on parents' knowledge and skills can be attained. This suggests that more comprehensive early preventive interventions with rigorous evaluations can have a significant impact.

This study aimed to investigate the effect of a Positive Parenting Program (Triple-P) on the interaction of the mother-adolescent with intellectual disability. The pre-test and post-test randomized experimental design was used for this research. Thirty-four mothers of adolescents with intellectual disability took part in the present research and were assigned to experimental and control groups, each comprised of 17 people. The experimental group took part in an 8-session Triple-P and each session lasted 75 minutes, but the control group did not participate in this intervention. The data were analyzed using MANCOVA. The findings revealed that Triple-P intervention significantly influenced dependency, closeness, conflict, and positive interaction between the mother and the child with intellectual disability. The present study emphasized that Triple-P will improve the interaction of mother-adolescent with intellectual disability; therefore, Triple-P is a useful intervention.