Background: People with intellectual disabilities are rarely involved in research on quality of life. The study sought to answer the question: what do people with intellectual disabilities believe improves or hinders their quality of life? Method: Using an inclusive, accessible research design, 18 participants met in small groups to answer the…

Background: Although particular technologies can enhance the quality of life (QoL) of people with profound intellectual and multiple disabilities (we use the term pervasive support needs), their objectives and outcomes are understudied. A systematic literature review was therefore conducted to explore this topic. Method: A search of four databases…

Background: People with intellectual disabilities remain disadvantaged in many aspects of everyday life. Capability approach is an underused approach in social care research and has at its core the importance of having capabilities or opportunities to do what we value. We use this approach to explore how people with intellectual disabilities can…

Background: Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger…

Background: Studies that have systematically reviewed the psychometric properties of health-related quality of life (HRQoL) and subjective wellbeing instruments for adolescents with intellectual disabilities narrowly focus on disease or health-specific conditions. This review aimed to critically appraise the psychometric properties of self-report…

Background: This systematic review aimed to explore how adults with autism participate in the community, the impact of community participation on quality of life and mental health, and factors that support and hinder participation. Method: A systematic review was conducted including studies published from inception to 17 January 2021. Results:…

Background: The Personal Outcomes Scale (POS) is a scale developed to measure quality of life of adults (18+) with intellectual disability. Previous studies have reported good fit for Spanish and Portuguese language versions of POS. Aims: This study aimed to evaluate the factor structure of the English language version of POS when used to measure…

Background: Adults with intellectual disabilities are an at-risk group of developing dementia. In the absence of a cure for dementia, emphasis on treatment is the promotion of Quality of life (QoL). The aim of this review is to identify and describe QoL tools for people with intellectual disabilities and dementia. Method: A systematic review was…

Background: Sexual well-being significantly impacts the overall quality of life for individuals with and without intellectual disabilities. Notably, parents play a pivotal role in influencing their children's sexual development, and their attitudes towards this topic are shaped by Chinese sociocultural values. Methods: This study employed…

Background: Families of parents with intellectual disabilities still face discrimination, stigma and inadequate support, placing them in vulnerable positions. Social assistive robotics offers promising support. This study investigates the possible impact of social assistive robotics on family quality of life (FQoL). Method: An inclusive, iterative…

Background: Prader-Willi syndrome (PWS) is a rare neurodevelopmental disorder with symptoms that impact health and quality of life (QOL). There is limited data on global health, QOL and the relationship with mood in individuals with PWS. Methods: Parents completed three validated assessments, the Glasgow Depression Scale-Carer Supplement (GDS-CS),…

Background: Previous research identifies organisational culture as one of a number of factors associated with the quality of life outcomes of group home residents' with intellectual and developmental disabilities. This study aims to elaborate on the dimensions of group home culture in settings in England. Method: Participant observations and…

Background: Parents of children with moderate to profound intellectual disabilities play a crucial role in providing direct care but often demonstrate heightened parental stress and reduced quality of life. This review explores perceived quality of life from the experiences of parents when caring for young and adult children. Method: A qualitative…

Background: While epilepsy can decrease quality of life and self-determination in individuals without intellectual disabilities, the impact of epilepsy on experienced self-determination in people with intellectual disabilities remains unclear. Method: We conducted semi-structured interviews with six adults (four men, two women) aged 30-61 with…

Background: Older people with intellectual disabilities represent a new and neglected population in need of services, yet it may be problematic to include them in generic services without having a clear idea of how elderly people from the general population feel towards them. To the best of our knowledge, this topic has not been addressed…