Background: Engagement of individuals with an intellectual disability and their caregivers in health care has been highlighted as an essential factor in developing services that better meet client needs; however, few studies have focused on the engagement of individuals with a dual diagnosis (intellectual disability co-occurring with a mental…

Background: To improve the quality of palliative care, six evidence-based tools were implemented in 10 care services specialised in care for people with intellectual disabilities. Contextual differences were taken into account by using a participatory action research approach. Method: The RE-AIM framework (Reach, Effectiveness, Adoption,…

Background: A comprehensive multidisciplinary medical guideline for adults with Down syndrome is lacking in the Netherlands. In this study, we aim to explore parents' views on multidisciplinary care and identify which aspects of health care they find most important in the context of developing such a guideline. Method: This qualitative study used…

Background: People with learning disabilities have higher rates of admitted patient care than the general population. This study explored emergency hospital admissions during 2018/19 in association with learning disability health check recording in general practice within the Kent Integrated Dataset during 2016/17 to 2018/19. Methods: Multiple…

Background: Family carers of people with an intellectual disability sometimes need to transfer their caregiving tasks for example because of illness or ageing. We examined carers' experiences with long-term care planning and the impact of the COVID-19 pandemic on their intentions to engage in long-term planning in the Netherlands. Method:…

Background: Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers. Methods: A cross-sectional survey was distributed to caregivers of…

Background: Direct support professionals (DSP) are instrumental in supporting the health care of individuals with intellectual disabilities, yet receive little training and support for this role. We implemented a capacity building intervention for DSPs in a community agency in Ontario, Canada. This study evaluated the perceived value and…

Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. Method: Caregivers (n…

Background: NHS England's "Transforming Care" agenda aims to reduce the number of adults with intellectual disabilities and autistic adults in mental health hospitals. The aim was to understand the demographic and clinical characteristics of those most at risk of admission. Method: A cohort, retrospective study of adults using community…

Background: The Fragile X community has expressed a desire for centralised, national guidelines in the form of integrated guidance for Fragile X Syndrome (FXS). Methods: This article draws on existing literature reviews, primary research and clinical trials on FXS, a Fragile X Society conference workshop and first-hand experience of clinicians who…

Background: This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes. Methods: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included…

Background: Down syndrome is the most common liveborn genetic condition. However, there are no surveys measuring societal services and supports for people with Down syndrome. We developed a questionnaire so that initiatives could be targeted towards countries most in need of assistance. Method: We formed a geographically diverse group of…

Background: It is unclear whether the limitations of young persons with a mild intellectual disability or borderline intellectual functioning preclude feasibility of the daily diary method. Method: For 60 consecutive days, 50 participants (M[subscript age] = 21.4, 56% male) who receive care in an ambulatory, residential, or juvenile detention…

Background: Transitioning from paediatric medical care to adult care is a challenging process for children, parents and healthcare professionals. The aim of this study was to explore the experiences, concerns and needs of parents of children with Down syndrome and of professionals regarding this transition. Method: A qualitative study was…

Background: A recovery approach within mental health services has gained momentum. Its meaning for adults with intellectual disabilities recovering from mental health disorders is less understood. Peoples' experiences of recovery were explored to help inform recovery-focused recommendations for clinical practise. Method: A qualitative design using…