Ajidd-American Journal on Intellectual and Developmental Disabilities最新文献

Rett syndrome (RTT) is a severe neurodevelopmental disorder associated with multiple neurobehavioral abnormalities. The Rett Syndrome Behaviour Questionnaire (RSBQ) was developed for pediatric RTT observational studies. Because its application has expanded to adult and interventional studies, we evaluated the RSBQ's psychometric properties in six pediatric (n = 323) and five adult (n = 309) datasets. Total and General Mood subscale scores had good reliability. Clinical severity had no influence on RSBQ scores. Exploratory and confirmatory factor analyses yielded 6 pediatric and 7 adult clinically relevant and psychometrically strong factors including the original Breathing Problems and Fear/Anxiety subscales and the novel Emotional and Disruptive Behavior subscale composed of items from the original General Mood and Nighttime Behaviours subscales. The present findings support additional evaluations and improvements of an important RTT behavioral measure.

The road to employment is not often easy for individuals with intellectual and developmental disabilities (IDD). Families know firsthand the complexities and challenges of obtaining employment for their members with extensive support needs. The purpose of this qualitative study was to identify the critical barriers they encounter in this important pursuit. We interviewed 60 parents (and other caregivers) whose family members with intellectual disability and/or autism had sought and/or obtained paid work. The difficulties they described were extensive and multifaceted. Specifically, participants identified 64 different barriers attributed to six primary areas: individuals, families, schools, service systems, workplaces, and communities. Their unique insights amplify the need for new approaches for promoting integrated employment. We offer recommendations for research and practice aimed at better understanding and ameliorating barriers to meaningful work for adults with IDD.

There is a critical need for high-quality clinical outcome assessments to capture the important aspects of communication ability of individuals with Angelman syndrome (AS). To center the perspective of caregivers, our team developed the novel Observer-Reported Communication Ability (ORCA) measure using best practice guidelines, with the goal of developing a measure that could be administered to caregivers directly without the need for a certified administrator for use in clinical trials. To refine the draft measure, we conducted two rounds of cognitive interviews with 24 caregivers and a quantitative study including 249 caregivers. The results from both studies support the overall content validity, construct validity, and the reliability of the ORCA measure for individuals with AS > 2 years old for use in research contexts. Future work should explore the responsiveness of ORCA measures to changes over time in a diverse sample.

Communication deficits have a substantial impact on quality of life for individuals with Angelman syndrome (AS) and their families, but limited qualitative work exists to support the necessary content of measures aiming to assess communication for these individuals. Following best practices for concept elicitation studies, we conducted individual qualitative interviews with caregivers and clinicians to elicit meaningful aspects of communication for individuals with AS. Caregivers were able to discuss their child's specific communication behaviors within a large number of expressive, receptive, and pragmatic functions via numerous symbolic and non-symbolic modalities. These results aligned well with published literature on communication in AS and will be used to inform the design of a novel caregiver-reported measure. Future studies on communication in individuals with AS should focus on gathering quantitative data from large samples of diverse caregivers, which would allow for estimations of the frequency of specific behaviors across the population.

This study assesses whether children with intellectual disability (ID) are more at risk of sexual abuse and whether they have similar consultation rates for physical and mental health disorders than children without ID. The matched-cohort design study uses administrative databases of children who had a sexual abuse report corroborated by a child protection agency and a matched group from the general population. Children with ID were 3.5 times more likely to have a corroborated sexual abuse report when compared to their peers without ID and a higher post-abuse number of medical consultations for physical and mental health disorders. Children with ID are more at risk of sexual abuse and physical and mental health disorders and may also be more vulnerable to the effects of abuse.

The present study examined the associations between networks of social relationships and psychological well-being among mothers of adolescents and adults with autism (n = 352) over a 12-year period of time. A structural equation modeling approach was used to delineate the relative impacts of network size and relationship diversity on maternal mental health, and to assess whether such effects are bidirectional. Mothers with more diverse relationships experienced reductions in depression and anxiety symptoms over time, and the psychological benefits of diversity remained after adjusting for network size. Results also suggest bidirectional links between network size, diversity, and maternal mental health. Research and clinical implications are discussed.

The purpose of this study was to compare the relative effects of word reading and story component interventions in developing reading comprehension of narrative texts with four students with mild levels of intellectual disability. A multielement design was used in this study. The findings revealed that the story component intervention was more effective and efficient than the word reading intervention in developing students' reading comprehension of narrative texts, and also indicated that both interventions were significantly effective in enabling subjects to answer literal questions. Only the story component intervention was significantly effective related to inferential questions. Finally, the findings revealed that students could generalize their reading comprehension skills to stories of different lengths.

Developmental disabilities (DD) research has depended on volunteer and clinical samples, with limited racial/ethnic diversity. This study focused on improving diversity and retention in DD research. The sample included 225 parents with a child with DD and 4,002 parents without children with DD from diverse racial/ethnic groups, drawn from Midlife in the United States, a national longitudinal study. Unexpectedly, parents of children with DD from diverse racial/ethnic groups were more likely to participate longitudinally than other groups. Relative participant payment was a factor that enhanced their likelihood of retention. This research illustrates how large national studies can be leveraged to increase representativeness and ongoing participation of diverse racial/ethnic groups, especially in combination with other factors, such as parenting a child with DD.