Background: Adult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume. Method: We examined these roles among 58 participants from the Netherlands, who completed an online questionnaire. Results: Most participants (89.7%) assumed…

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: Primary care providers require accurate evidence on chronic disease prevalence in people with intellectual disabilities in order to apply this information into practice. This study aimed to map the broadness of literature on chronic disease prevalence in people with and without intellectual disabilities, and to explore main…

Background: Taking a trauma informed care approach has demonstrated positive outcomes for services for people in the general population. Given the increased vulnerability to psychological trauma for adults with an intellectual disability, this study explores what residential staff know about trauma and trauma informed care. Methods: Thirty-two…

Background: People with intellectual disability often receive diagnoses which may complicate their clinical care. Among these, personality disorder diagnoses are still considered contentious. Little is also known on the perspectives of staff caring for people with intellectual disability who have received a personality disorder diagnosis. Methods:…

Background: Intensive interaction is an approach used to develop the communication and social inclusion of those who are pre-verbal. It is used in a variety of settings by healthcare and educational staff. Method: A systematic search was conducted to identify and review the literature which explores staff experiences of intensive interaction being…

Background: Government restrictions enforced globally in response to COVID-19 necessitated changes to the delivery of mental health services, with many psychology professionals (PPs) forced to transfer their face-to-face practice to virtual means (telephone/video therapy) overnight. This review explores what is known about the experiences of PPs…

Background: Individuals with intellectual and developmental disabilities demonstrate disparities in sexual and reproductive health (SRH) compared to individuals without disabilities (e.g., lack of sexual education and knowledge, increased rates of abuse, unplanned pregnancies and sexually transmitted infections). Therefore, the purpose of this…

Background: Individuals with intellectual disabilities are at increased risk of mental health disorders, but may struggle to access appropriate services. While assessment/treatment may need to be adapted, knowledge is limited about what such adaptations may entail. Method: During a service development project, the participants (33 professionals,…

Background: Although a 'person-centred focus' is a legislated objective for both aged-care and disability services sectors in Australia, evidence suggests limited translation into systems and practices due to entrenched silos. This paper proposes a Best Practice Framework to mitigate these silos. Methods: Mixed-methods research comprising key…

Background: Research suggests that people with intellectual disabilities have a higher risk for cardiovascular disease than the general population. The aim of this study was to identify barriers for the prevention, diagnosis, and treatment of cardiovascular disease for people with intellectual disabilities. Method: We conducted individual…

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: Children with intellectual disability are vulnerable to adverse events in hospital due to limited staff skills and system safeguards. Method: A systematic review of the literature explored healthcare staff (HCS) experiences in providing care for children and young persons with intellectual disability in hospital using thematic…

Background: Research into hospital treatment and care of children with intellectual disabilities is extremely limited, but available literature points to difficulties. Some children have a co-occurring condition alongside an intellectual disability which requires ongoing treatment, such as a cleft lip/palate. To date, their experiences remain…

Background: Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability. Method: We used a five-stage mixed-methods…