Parents of children with developmental disabilities (DD) are at increased risk of experiencing psychological stress compared to other parents. Children’s high levels of internalizing and externalizing problems have been found to contribute to this elevated level of stress. Few studies have considered the reverse direction of effects, however, in families where a child has a DD. The present study investigated transactional relations between child behavior problems and maternal stress within 176 families raising a child with early diagnosed DD. There was evidence of both child-driven and parent-driven effects over the 15-year study period, spanning from early childhood (age 3) to adolescence (age 18), consistent with transactional models of development. Parent-child transactions were found to vary across different life phases and with different domains of behavior problems.
Little is known about outcomes for individuals with autism spectrum disorders (ASD) into adulthood. Several characteristics of individuals with ASD predict long-term outcomes, and the family environment may also play a role. The present study uses a prospective, longitudinal design to describe and predict trajectories of autism symptoms and maladaptive behaviors over 8.5 years in a large, community-based sample of adolescents and adults with ASD. Overall, autism symptoms and maladaptive behaviors were observed to improve over the study period. Above and beyond the adult’s gender, age, and level of intellectual disability, greater improvements were associated with higher levels of maternal praise (based on maternal speech samples) and higher quality mother-child relationships. Implications for future research and intervention are discussed.
This study extends previous findings by focusing on both positive and negative dimensions of parent well-being during their child's adolescent period. Adolescence can be a stressful time for parents, with typical developmental tasks entailing additional strains for parents of adolescents with DD. The present findings point to several coping strategies that may reduce the impact of challenging behaviours during this period on mothers' symptoms of depression and feelings of parenting efficacy. Certain coping strategies were found to exert a greater impact on maternal well-being for parents of adolescents with higher levels of behaviour problems, suggesting that interventions may benefit from an increased focus on this group of mothers with heightened caregiving demands.
Parents of children with developmental disabilities (DD) face greater caregiving demands than other parents, which may lead to heightened levels of stress. Characteristics of the child with DD as well as family resources may explain the extensive variability observed in parental adjustment. This study examined trajectories of parenting stress among 108 mother–father dyads parenting a child with DD, from early childhood (age 3) through adolescence (age 15). Using multilevel dyadic analyses, stress was found to increase from early to middle childhood then subsequently decrease through adolescence. Child‐related stressors (behavior problems, adaptive behavior) and family resources (social support, positive family climate) in early childhood predicted initial levels and change in stress. Mother–father differences and recommendations for intervention are discussed.
As life expectancy of people with intellectual disability (ID) has increased, there has been a concurrent increase in age-related illnesses and conditions similar to that of the general population. These circumstances result in people with ID dying from typical life-ending conditions, and thus, they require similar end-of-life services such as palliative and hospice care. Although there are notable barriers to hospice for all, people with ID face additional challenges in accessing the benefits of these services. This article presents a review of the literature on these issues, underscoring the multiple challenges and the importance of a more collaborative approach between hospice and palliative care workers with people with ID, their families, and other important stakeholders.
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