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…

Adults with disabilities have long been at the forefront of disability advocacy in the United States. Grounded in the tenets of radical disability studies and principles of disability justice, this study explored the lived experiences of 12 adults with disabilities, including intellectual disability and developmental disabilities, with a…

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: People with intellectual disability in Chile face individual and collective barriers to social participation. Lack of knowledge about their rights and tools for effective self-advocacy seem to be key elements that need to be improved to facilitate participation. Method: We present PaísDI, a 16 h long manualised program created by…

Background: Parents with learning disabilities report facing a widely held 'presumption of incompetence', placing them under pressure to prove their parenting competence. In collaboration with a learning disability theatre company, an inclusive research methodology explored experiences of parenting with learning disabilities, with a specific focus…

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: Multimedia Advocacy is the use of digital technology for people with intellectual disabilities as means of developing identities, being heard, connecting to family and care networks and, advocating for change. Methods: We explore principles and theories that underpin Multimedia Advocacy, mapping disciplinary approaches that have…

Background: A high sense of subjective well-being has been associated with more prosocial behaviours, better health, work productivity and positive relationships. The aim of this systematic review was to explore what impact self-advocacy has on the subjective well-being of people with intellectual disabilities. Method: The authors reviewed…

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: People with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives. Method: Development and piloting of a 5-session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage…

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…