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…

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…

Background: People with severe challenging behaviour are vulnerable to exclusion from local services and removal to out-of-area placements if locally available supported accommodation is insufficient to meet their needs. There are concerns about the high costs and potentially poorer outcomes of out-of-area placements but relatively little is known…

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…

Background: Persons with intellectual and developmental disabilities have had regrettably few opportunities to voice their opinions on aspects of research with which they have had direct experience. Understanding and responding to these views can contribute to policies and practices that increasingly treat people as they desire to be treated.…

Background: In the context of a health intervention among people with intellectual disabilities (ID), there was a need to assess satisfaction with some aspects of life, in order to monitor both potential positive and negative effects of the intervention. The aim of the present study was to develop and evaluate an easily administered scale for…

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…

Background: The concept of family quality of life is becoming increasingly important in family support programmes. This concept describes the quality of life of all family members and the family system as a whole, but only the opinion of the parents has been included. The opinion of the siblings has been incorporated in the opinions of the…

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: Present day service systems evolved from the traditional model of disability intervention where the child with the disability and the family were viewed as pathological entities that needed to be fixed rather than supported. Scholars have increasingly called for a greater focus on the family in service delivery, but few studies have…

Background: Family quality of life (FQOL) is a recent concept in intellectual/developmental disability research. Outcomes for the family are important to the provision of services because families, rather than institutions, are increasingly considered the primary support unit. This article presents Australian findings using the international…

Background: The limited literature that exists about intellectual disabilities (ID) in Nigeria suggests that perceptions of ID may be shaped by social and cultural beliefs, and that socio-economic factors have prevented the development of policy and services. The present study sought to explore these suggestions in more detail by administering the…

Background: The concepts of quality of life and family quality of life (FQOL) are increasingly being studied in the field of intellectual disabilities (ID) in China as important frameworks for: (1) assessing families' need for supports and services; (2) guiding organisational and service delivery system changes; and (3) evaluating quality family…

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…