Background: This study aims to explore patients' and their caregivers' experiences with and expectations of a medical consultation with a specialised ID physician at an outpatient ID practice. Methods: Fifteen semi-structured interviews were conducted with patients and their caregivers. Interview topics concerned (1) ID physician's knowledge and…

Background: India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India. Methods: A qualitative evidence synthesis was…

Background: As individuals with intellectual and developmental disabilities age, their siblings are more likely to assume caregiving responsibilities. However, little is known about experiences of East Asian siblings with respect to their caregiving and future-planning within their own country, as well as other East Asian countries. Methods: Using…

Background: Since the introduction of austerity measures in 2008, funding for care, welfare, services and support systems in the United Kingdom has been reduced. There is little research that explores the experiences of parents of adults with intellectual disabilities and service providers regarding care, relationships and social networks in times…

Background: Despite work on the self-identities of people with intellectual disabilities, research has yet to describe the self-perceptions of people with Prader-Willi syndrome (PWS). The perspectives of those with PWS are also important for rapidly evolving clinical trials aimed at treating symptoms of PWS. Method: Twenty-one young people with…

Background: Given the increasing lifespans of individuals with intellectual and developmental disabilities (IDD), siblings may fulfil multiple caregiving roles simultaneously for their ageing parents, their offspring, and their brother or sister with IDD. Yet, little is known about compound sibling caregivers. The purpose of this study was to…

Internationally, parents of children with intellectual and developmental disabilities have historically engaged in advocacy leading to compulsory education for their children. However, few parents have reported civic engagement. Although empowerment is related to parent advocacy, it is unclear whether empowerment relates to civic engagement. Thus,…

Background: Future planning has emerged as a global issue for families of individuals with intellectual and developmental disabilities due to the longer lives and limited long-term services and supports in the adult disability system. While it has received greater attention, most future planning studies only included parents of individuals with…

Background: Children with intellectual disability are vulnerable to adverse events in hospital due to limited staff skills and system safeguards. Method: A systematic review of the literature explored healthcare staff (HCS) experiences in providing care for children and young persons with intellectual disability in hospital using thematic…

Background: As individuals with intellectual and developmental disabilities (IDD) grow older, siblings are likely to become caregivers for their brothers and sisters with IDD. Thus, it is important to identify the correlates of sibling caregiving to facilitate transitions to caregiving roles. Method: This study involved the secondary analysis of a…

Background: This paper explores the experience of staff employed within forensic disability across Victoria in an attempt to better understand service needs in this field. The complex needs of individuals with disabilities involved in the criminal justice system or presenting with offence-related behaviours suggest that there is a requirement to…

Background: Down syndrome (DS) is the most common genetic cause of intellectual disability. Prior research has primarily focused on associated medical problems and skill deficits. This study takes a novel positive psychology approach by examining critical individual characteristics and environmental factors that facilitate exceptional quality of…

Background: Elevated stress is common among parents of children with disabilities. The parents' perspective and evaluation of services have a significant impact on their well-being and adaptation to their child's disability and is a source of information for service improvements. This study explores parental perceptions of communication and…

Background: Adolescents with intellectual disability have high levels of unrecognized disease and inadequate health screening/promotion which might be addressed by improving health advocacy skills. Methods: A parallel-group cluster randomized controlled trial was conducted to investigate whether a health intervention package, consisting of…

Background: While inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. In this paper, we explore the contribution of two inclusive qualitative research…