Background: This study investigates the healthcare needs and experiences of adults with intellectual disabilities, focusing on identifying areas for improvement. Its innovation lies in including individuals with intellectual disabilities as co-researchers in the research process. Method: Thematic analysis was performed on five focus groups with 30…

Background: Sensitive responsiveness is an important aspect in affect-regulation of people with severe to profound intellectual disabilities. Aim: This randomized controlled trial evaluated the Attune & Stimulate-checklist, a tool for detecting subtle and idiosyncratic communicative behaviours and responding adequately. Methods: Effects on the…

Background: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. Methods: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care…

Background: Wider communication about death and dying for those with intellectual disabilities has been highlighted as being of key importance. Objective: To gain the perspective of paid carers based in residential homes about meaningfully supporting individuals with intellectual disabilities in the bereavement process. Methods: Semi-structured…

Background: Adults with severe/profound intellectual disability typically face poor communication outcomes as they are often nonverbal and need their supporters to provide for their communication needs. This review aimed to identify studies focused on the communication resources people with severe/profound intellectual disability use for…

Background: During the initial phase of the COVID-19 pandemic, many people with disabilities living in home care facilities could not receive visitors. The use of virtual social contact has been recommended by health authorities. This systematic review examined the scientific evidence of the use and feasibility of information and communication…

Background: This study argues for displays of affect by people with severe or profound intellectual disabilities to be analysed in the course of everyday interactions with the people who support them. Method: Conversation analysis is applied to the affective displays of residents of a social care service for people with severe or profound…

Background: Little is known about how to involve people with intellectual disabilities in making decisions about treatment and care in their palliative phase. We aimed to reach a consensus about a shared decision-making (SDM) conversation aid for people with intellectual disabilities, relatives, and healthcare professionals. Methods: In a Delphi…

Background: Understanding the positive qualities of individuals with intellectual and developmental disabilities can provide a much-needed counterpoint to deficit-based depictions of disability. Method: This study examined how 163 young adults (ages 18-30) viewed the strengths of their brothers and sisters with intellectual disability or autism…

Background: Sharing personal experience in narrative is challenging for individuals with intellectual disabilities. The aim was to investigate the potential of Storysharing® (Storysharing is an innovative communication method based on personal narrative, which has been developed to support conversations with people who have severe difficulties in…

As people with intellectual and developmental disabilities (I/DD) age, it is important that I/DD agencies are prepared to support healthy ageing in homes and in communities. This study explored supports and barriers to sustaining community-based health and participation initiatives (CBHPI) for people ageing with I/DD living in group homes managed…

Background: Recent studies have shown that it is possible to foster affective involvement between people with congenital deafblindness and their communication partners. Affective involvement is crucial for well-being, and it is important to know whether it can also be fostered with people who have congenital deafblindness and intellectual…

Background: Communicative health literacy is a term relating to the range of competencies and capabilities patients bring to the task of seeking information about their health and sharing it with others. This exchange can be problematic for people with intellectual disabilities. The aim of this review was to synthesize findings from interventions…

Background: Recruitment is a widely cited barrier of representative intellectual disability research, yet it is rarely studied. This study aims to document the rates of recruiting children with intellectual disabilities using two methods and discuss the impact of such methods on sample characteristics. Methods: Questionnaire completion rates are…

Background: Sexual violence is associated with significant morbidity and mortality. The incidence of sexual violence against adults with intellectual disability is significantly higher than in the general population. The aim of this systematic review and qualitative meta-synthesis was to explore the barriers faced by adults with intellectual…