Adult siblings are potentially important sources of care, support, advocacy, and friendship for their brothers and sisters with intellectual and developmental disabilities (IDD). Drawing on data about 851 adult siblings who completed an online national survey, we examined predictors and potential key moderators of siblings' mental distress,…

Background: Effects of staff provided positive behaviour support (PBS) for individuals with intellectual disabilities are unclear. Method: Using a multicentre non-randomised cluster controlled design, 26 teams of residential group homes, including 245 staff members of 167 individuals with intellectual disabilities, were allocated to a PBS or…

Carers of adults on the autism spectrum often experience high levels of stress, worry, and caregiver burden. There are few studies identifying the predictors of carer mental well-being and none have been conducted in Australia. Data from the Autism Cooperative Research Centre for Living with Autism's Australian Longitudinal Study of Autism in…

Current mainstream care for autistic individuals is fragmented, narrow, and poorly individualized. To better describe cutting-edge autism care, we searched for care programs in the United States that had been collaboratively designed with patients and families and that carry the highest potential to improve the quality of life of autistic…

Background: Friendship is important to quality of life, yet people with intellectual disability have more restricted social networks and fewer friends outside family and support staff. Method: Data from a nationally representative longitudinal study of older adults with intellectual disability (aged >40) examined rates and types of friends.…

Background: Placement behaviours of families of adults with intellectual disabilities has received little or no attention of researches to date. Methods: A prospective design was adopted to examine changes in placement decisions of 75 family carers over a 12-month period. Factors associated with changes were also examined. Results: Over 12 months,…

Increasingly, lifelong learning is of growing importance and it refers to the constant experiences and needs of individuals adapting to the development of their personal and social skills in relation to the contexts and circumstances in which they are inserted. For this, one of the primary requirements to be able to enjoy a high Quality of Life.…

The aim of this study was to examine the mediating effect of formal and informal social support on the relationship of caregiver burden and quality of life (QOL), using a sample of 320 parents (aged 50 or older) of adult children with autism spectrum disorder (ASD). Multiple linear regression and mediation analyses indicated that caregiver burden…

Self-report measures are widely used for research and clinical assessment of adults with autism spectrum disorder. However, there has been little research examining the convergence of self- and informant-report in this population. This study examined agreement between 40 pairs of adults with autism spectrum disorder and their caregivers on…

Objectives: Caring for individuals with intellectual disabilities (ID) or autism spectrum disorder (ASD) can be gratifying as well as stressful. Professional staff employed as caregivers often report compromised mental and physical wellbeing due to the stressful nature of working with clients who exhibit aggressive and destructive behaviors.…

Background: Proxy quality of life (QoL) evaluation has been reported to be influenced by many factors. The present study was designed to investigate the impact that the presence of severe intellectual disability (ID) may have on proxy attribution of QoL in the instrumental assessment. Methods: The "other person" form (proxy…

Caring for a family member with intellectual developmental disability (IDD) often results in many negative impacts, such as higher levels of stress and depression, physical and/or mental issues, lower level of support, lower financial capacity, as well as less positive or more pessimistic views of their child's future, and an overall lower level…

Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic…

Individuals with intellectual and developmental disabilities (IDD) and their families face many important decisions as the individuals with IDD enter adulthood, including where to live. Although there are numerous housing options for individuals with IDD outside of institutions, there is a paucity of information available to inform them about how…

Background: Because of an increase in life expectancy and de-institutionalisation, many adults with intellectual disability (ID) live with and are cared for by their parents throughout their adult lives. Because of caring demands, the quality of life (QOL) of parents may be affected. The study explored the impact of caring for an adult with ID on…