Background: People with intellectual disabilities are at much higher risk of preventable deaths compared to the general community. However, studies identifying the cause of death in people with intellectual disability are generally based on one primary cause which is frequently attributed to the person's disability. Therefore, the aim of this…

Background: People with intellectual disability frequently have eating, drinking and swallowing difficulties (dysphagia) and are at greater risk of premature mortality, particularly from aspiration and respiratory infections. The insertion of a percutaneous endoscopic gastrostomy (PEG), as part of a multidisciplinary management plan, may help to…

Background: We now have sufficient evidence demonstrating inequalities in specific avoidable causes of death for adults with intellectual disability compared to their peers without intellectual disability. Apart from COVID-19, the largest differentials that disadvantage people with intellectual disability are in relation to pneumonia, aspiration…

Background: Sepsis is a common cause of death within the general population and the third most common cause of death for people with a learning disability, suggesting an increased vulnerability or different trajectory within this population. Despite this, there is currently no research into the direct lived experiences of people with a learning…

Background: Recently, more and more people with intellectual disabilities have been dying from life-limiting conditions, and on many occasions, people with intellectual disabilities have not been informed of this. There is limited evidence concerning the views and opinions of this cohort regarding the information that is needed in order for…

Background: Academic research and reports from healthcare professionals tell us people with learning disabilities are not routinely supported to learn about end-of-life issues or make plans for the end of their lives. Materials: Questionnaires were used to check how much people knew. Accessible symbols were used to help people understand…

Background: This paper considers the challenges regarding the development and use of self-report tools for sensitive, personal topics, in this case experiences of death and bereavement for individuals with intellectual disabilities (ID). These challenges are represented through the experience of the development of a self-report measure of…

Background: The present study investigated psychologists' views of the experience of death and bereavement among children with intellectual disabilities. Materials and Methods: Twelve psychologists with experience of working with children with intellectual disabilities (Educational = 2, Clinical = 8, and Behavioural analysts = 2; average years of…

Background: As the life expectancy of adults with intellectual disability has increased, experience of familial bereavement is becoming more frequent. However, this group may not receive adequate information and support to enable them to understand and cope with the experience of loss. Method: This narrative review examined the impact of…

Background: In recent times, people with intellectual disabilities are increasingly included in research studies; however, their participation in sensitive research such as palliative and end-of-life care is less frequent. The reasons for not including people with intellectual disabilities in these kinds of research studies are issues in relation…

Background: Bereavement is a universal experience, yet little research has explored the lived experience of bereavement for people with learning disability (PWLD). Materials and methods: Four PWLD were interviewed about their experience of bereavement. Data were analysed using interpretative phenomenological analysis. Results: Four themes were…