Background: Associations between childhood adversity and negative health outcomes are well documented within the general population; however, this relationship has yet to be confirmed in adults with intellectual and developmental disabilities (I/DD). Bridging the gap between public health and I/DD research is critical in order to better understand…

Background: Research examining the quality of life (QoL) of children with severe developmental disabilities (SDD) is limited. The present study examines parent perceptions of child QoL in children with SDD compared with typically developing (TD) children and then examines predictors of QoL for the SDD group. Method: Parents of 246 children with…

Background: The purpose of this study was to investigate the relationship between family routines, cognitive appraisal of the impact of autism spectrum disorders (ASD) on the family and family quality of life (FQOL) in families raising children with ASD in South Africa. Methods: A sample of 180 families of young children with ASD who were…

Background: The quality of life (QOL) construct is proposed as a method to assess service outcomes for people utilising disability services. With this in mind, the aim of this study was to conduct a systematic review of available QOL measures for people with intellectual disability (ID) to pinpoint psychometrically sound measures that can be…

Background: This study examined family quality of life (FQOL) and psychological well-being from a multidimensional perspective. The proposed model was based on the double ABCX model, with severity of the disorder, behaviour problems, social support, sense of coherence (SOC) and coping strategies as components. Method: One hundred and eighteen…

Historically, intervention programmes in intellectual and developmental disabilities have targeted the individual's special needs independent of the family and environmental context. This trend has been changing over the past two decades. This paper presents a literature review on changing trends in family support and the development of family…

Background: The changed societal views of persons with disabilities are reflected in the 2006 United Nations "Convention on the Rights of Persons with Disabilities". However, what is not specified in the Convention is how to operationalise and measure the Articles composing the Convention, and how to use that information to further…

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…

This article poses the question, "Who is the expert?" in relation to people with intellectual disabilities. It begins with an exploration of what it means to assert "moral authority" in relation to people with IDs, and makes the argument that "experts" who draw moral boundaries, define conceptions of the "good" and quality of life for people must…

Background: While there is a growing body of literature in the quality of life of families that include children with disabilities, the majority of research has been conducted in western countries. The present study provides an initial exploration of the quality of life of Malaysian families that include children with developmental/intellectual…

Background: Caring for a child with a disability can be a unique and challenging experience, with families often relying on informal networks for support. Often, grandparents are key support resources, yet little is known about their roles and experiences. Reporting on data collected in a larger Australian study, this article explores…

Background: Although the Family Quality of Life Survey--2006 (FQOLS-2006) is being used in research, there is little evidence to support its hypothesised domain structure. The purpose of this study was to test the domain structure of the survey using confirmatory factor analysis. Method: Samples from Australia, Canada, Nigeria and the USA were…

Background: Families of children with disabilities experience extra financial strains, and mothers are frequently unable to participate in paid work because of caregiving obligations. Methods: A mailed survey and follow-up phone calls were used to gather data about mother's health, workforce participation and barriers to inclusion in the workplace…

Background: Concepts such as support, quality of life and quality of services are customary in services for people with intellectual disabilities. The identification of the different ways of conceiving, prioritising and implementing these concepts by service providers can help to drive changes to achieve better personal outcomes for this…

Background: The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians. Methods: This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with…