Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience…

This scoping review explores (a) barriers faced by immigrant families of children with intellectual and developmental disabilities (IDD) when accessing healthcare-related services in the United States, (b) where research stands based on the health disparity research framework, and (c) implications for future health disparities research with this…

The study explores the influence of socioeconomic status (SES) on the academic outcomes of children with intellectual disability (ID), and the role of parental participation and parental attitudes toward educational communicators in this process. A total of 305 children with ID from special needs schools and their parents and teachers in China…

Supportive, informed parenting is critical to improve outcomes of children who experience intellectual and developmental disabilities (IDD). Parents want to learn about their child's condition, needs, and strategies to improve family life. The internet is a valuable resource, but how parents evaluate and apply information is unknown. We conducted…

This systematic review examined 14 U.S. studies published since 2000 reporting prevalence estimates for intellectual disability (ID) or developmental disability (DD). Prevalence rates for children were between 11.0 and 13.4 per 1,000 for ID and between 45.8 and 69.9 per 1,000 for DD using data from 2010 or later. A 2015 Ohio study of adults…

Despite the advances on the assessment of quality of life, this concept is barely studied and is riddled with important limitations for those with autism spectrum disorder (ASD). This article is aimed at validating a questionnaire to assess quality of life of children with ASD and intellectual disability (ID). Based on the KidsLife Scale, geared…

Many children with fragile X syndrome (FXS) have complex communication needs and may benefit from augmentative and alternative communication (AAC). This qualitative study explored how four mother--child dyads used AAC in the home. Data were collected using participant observations, open-ended interviews, and record reviews, and analyzed using…

Grandparents can play critical roles in the lives of children with intellectual and developmental disabilities and their families. However, current research and understanding around grandparent roles and experiences is limited. The purpose of this qualitative study was to examine the roles and experiences of grandparents supporting children with…

The Beach Center Family Quality of Life Scale is an internationally validated instrument for measuring family outcomes. To revise the scale for better alignment with the Family Quality of Life theory, the authors excluded non-outcome items in this revision. In this study, we examined reliability and validity of the revised scale (i.e., the FQoL…

Although individuals with intellectual and developmental disabilities (IDD) are living longer lives, fewer than half of parents of individuals with IDD conduct future planning. The correlates and barriers to future planning must be identified to develop targeted interventions to facilitate future planning. In this study, 388 parents of individuals…