When researchers evaluate adult outcomes for individuals with intellectual and/or developmental disabilities (IDD), the perspective of families is not always considered. Parents of individuals with IDD ("N" = 198) answered an online survey about their definition of a successful transition to adulthood. Content analysis was used to…

This study explored the preliminary experiences of parents upon learning of their child's diagnosis of Down syndrome. Qualitative data from a web-based, national survey were analyzed based on two groups: prenatal ("n" = 46) or postnatal ("n" = 115) diagnosis. Three primary categories emerged from the data analysis:…

How one perceives the self is critical to long-term development. The purpose of this study was to explore the self-perceptions of adolescents with intellectual and developmental disabilities. Participants included 51 adolescents with intellectual and developmental disabilities, their parents (n = 50), and teachers (n = 12). A mixed-methods design…

Generally, studies have revealed that only a minority of people are bothered by participation in research on traumatic stress. Severity of traumatic events and subsequent responses are typically unrelated to negative reactions. We included 386 family members and caregivers (respondents) of people with intellectual and developmental disabilities…

We assessed the extent to which parents of children with autism spectrum disorder report that they are engaged in shared decision making. We measured the association between shared decision making and (a) satisfaction with care, (b) perceived guidance regarding controversial issues in autism spectrum disorder, and (c) perceived assistance…

Advances in gene-environment interaction research have revealed genes that are associated with aggression. However, little is known about parent perceptions of genetic screening for behavioral symptoms like aggression as opposed to diagnosing disabilities. These perceptions may influence future research endeavors involving genetic linkage studies…

Caring for children with disabilities contributes to increased levels of parent stress or caregiver strain. However, the potential relationship of sensory features to strain among caregivers of children with autism spectrum disorder (ASD) and other developmental disabilities (DD) is unknown. Sensory features include overreactions, underreactions,…

Participation in athletics has benefits for persons with intellectual disabilities and their parents. Our purposes here were to confirm these benefits and to determine whether reports from athletes and parents were comparable (i.e., to test the validity of proxy responding). We conducted interviews with 34 Special Olympics sailing/kayaking…

Few research studies have explored how the level of a child's behavior problems leads to psychological distress in parents of children with autism. The authors explored whether psychological acceptance and mindfulness mediated this relationship between child behavior and parental distress. Seventy-one mothers and 39 fathers of children with…

Among aging parents (mean age = 65, "N" = 139) of adults with developmental disabilities, we examined the effectiveness of multiple forms of coping with caregiver burden. As expected, accommodative strategies of adapting to stress (secondary engagement), used frequently in later life, buffered the impact of caregiver burden, whereas…

Utilizing grounded theory qualitative research methods, a model was developed for describing parental adaptation after voluntary placement of a child with severe or profound developmental disabilities in out-of-home care. Interviews of parents from 20 families were analyzed. Parents' cognitive appraisals of placement outcomes were classified…

Before the 1990s, research on the early identification and prevention of severe behavior disorders (SBDs), such as aggression, self-injury, and stereotyped behavior, among young children with intellectual and developmental disabilities (IDD), was mostly done with children 3 years or older. More recent work suggests that signs of SBDs may occur as…

Forty-five parents of children with autism, cerebral palsy, Down syndrome, and sickle cell disease participated in 8 focus groups. Parents discussed how they, the child with the disability, and the siblings addressed community perceptions about the child's disability. Themes evolving from the interviews included (a) support and lack of support,…

Individuals with Down syndrome are at increased risk of congenital heart conditions (CHCs), and mortality is higher in people with Down syndrome and a CHC than those without (J. C. Vis et al., 2009). As a consequence, parents of children with Down syndrome and a CHC are more likely to outlive their child. In this research, semistructured…

Parental characteristics were significant predictors of health, functional abilities, and behavior problems in adults with Down syndrome ("n" ?=? 75) over a 22-year time span, controlling for initial levels and earlier changes in these outcomes. Lower levels of behavior problems were predicted by improvements in maternal depressive…