Background: There is insufficient evidence to guide decisions around (non-)disclosure of bad news of life-limiting illness and death to people with intellectual disabilities. Aim: The aim of this study was to develop guidelines for decisions about (non-)disclosure of bad news around life-limiting illness and death to people with intellectual…

Background: Little is known of paid carers' perspectives when caring for people with intellectual disabilities at the end-of-life. Materials and methods: Sixty four individuals from intellectual disability services took part in 12 focus groups. Interviews were analysed using framework analysis. Results: Participants wanted to provide palliative…

Carers of individuals with an intellectual disability are often responsible for managing their children's psychiatric crises when they arise. The purpose of this study was to examine the experiences of families using crisis and short-term transitional supports from the perspectives of families and of crisis and transitional support staff. Three…

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…

This paper describes the development of a Quality of Care and Support (QOCS) scale for use with adult persons with physical and intellectual disabilities. In the pilot phase of the study, 12 centers from around the world carried out focus groups with people with physical and disabilities, their carers, and with professionals in order to identify…

Background: This paper describes the development of an Attitudes to Disability Scale for use with adults with physical or intellectual disabilities (ID). The aim of the research was to design a scale that could be used to assess the personal attitudes of individuals with either physical or ID. Method: The measure was derived following standard…

Aim: There is a growing evidence of the physical and mental health inequalities in people with intellectual disability (ID) although less has been written concerning the mental health of women with ID (International Association for the Scientific Study of Intellectual Disabilities). This is compared with the substantive literature published within…

Background: Strains on the mental health system and inaccessible services for individuals with intellectual disabilities (ID) often force caregivers to bring individuals with ID to the emergency department (ED) when in psychiatric crisis. The purpose of this study was to understand the experience of caregivers and adults with ID and mental health…

This study explores the perceptions of support workers working with adults with learning/intellectual disabilities, training and support needs. Data was collected by focus group (n = 3) and semi-structured interviews (n = 5). Participants saw their key role as maximising quality of life, identified "Trial and error" as the main mode of skill…

Background: Despite a recent ideological shift towards the recognition of sexual autonomy for people with an intellectual disability (ID), there are continuing social and cultural barriers to sexual expression. Part I of the current two-part study assessed the sexual knowledge, experiences and aspirations of service users through focus groups and…