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,…

Background: People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life. Methods: Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110…

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…

The Pediatric Quality of Life Inventory (PedsQL) measures health-related quality of life, a growing area of research, particularly among individuals with disabilities. This research is necessary to fully understand the varied needs of the population and, ultimately, ensure that those needs are being met. The current study assessed the reliability…

The Cerebral Palsy Quality of Life for Children (CP QOL-Child) is the first health condition-specific questionnaire designed for measuring QOL in children with cerebral palsy (CP). However, its construct validity has not yet been confirmed by confirmatory factor analysis (CFA). Hence, this study assessed the construct validity of the caregiver…

Background: The measurement of subjective well-being in people with severe and profound intellectual disabilities (ID) is a difficult challenge. As they cannot self-report about their life satisfaction, because of severe communicative and cognitive limitations, behavioural observations of their emotions and moods are important in the measurement…

The purpose of this study was to test the psychometric properties of the Caregiver Strain Questionnaire (CGSQ) among caregivers of children with autism. The CGSQ was originally developed to assess burden experienced by parents of children and adolescents with serious emotional and behavioral disorders. Study data was collected from 304 primary…

To assess the measurement properties of a new QOL instrument, the Cerebral Palsy Quality of Life Questionnaire-Teen (CP QOL-Teen), in adolescents with cerebral palsy (CP) aged 13-18 years, examining domain structure, reliability, validity and adolescent-caregiver concordance. Based on age, 695 eligible families were invited to participate by mail.…

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…

This study explores front-line staff knowledge and perceptions of how people with intellectual disability residing in residential services are supported to communicate effectively. Participants ("n" = 138) completed a self-report questionnaire adapted from an instrument developed by DeSimone & Cascella (2005) "Journal of…

The aim of this study was to analyze the agreement between self and proxy reports of quality of life (QoL) in people with intellectual disabilities and to examine the factors which contribute to these differences. The study was conducted across six international centres in a sample of 614 adults with intellectual disabilities as well as two…

This paper presents findings from a landmark Australian study investigating the experiences and perspectives of young people in residential care. Data from a representative sample are analyzed to identify young people's satisfaction with various aspects of their residential care experience: their sense of safety, normality, support, comfort in…

Background: Primary family carers of adults with profound intellectual and multiple disabilities (PIMD) experience a range of considerable demands. Method: A census survey was conducted in a city of Taiwan; 796 family carers of adults (aged 18 or older) diagnosed with intellectual disability and/or with multiple disabilities living with the family…

Little scientific research has focused on the measure of how positive wellbeing of people caring for people with disabilities. The purposes of the present study are to explore the wellbeing perception and its determinants of caregivers who caring for people with disability. We employed a cross-sectional, self-administrative structured…

Background: Little account has been taken of quality of life (QoL) among family carers of adults with an intellectual disability (ID) and family carers of adults with a mental illness (MI), particularly the female ageing carers' perceived stigma. We explore whether there are differences in the significant predictors of female ageing family carers'…