Background: At least half of children and adults with Down syndrome have a major mental health concern during their life but few studies ask people with Down syndrome directly about their experience. We used a co-research model to explore anxiety, stress, and coping in adults with Down syndrome. Methods: Our group of researchers and adults with…

Background: People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting. Method: This qualitative study used reflexive thematic analysis. Two focus groups were held via…

Background: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence-base being about those with Autism Spectrum Condition or adults with intellectual disabilities. Aim: To share rich detail of the emotional and…

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: Children with intellectual disability are at greater risk of developing anxiety than the general population. Limited research has examined the challenges associated with recognising and responding to anxiety in children with intellectual disability, and its perceived impact. Aim: This study aimed to explore anxiety in children with…

Background: There has been extensive research into adverse childhood experiences (ACEs), however, less consideration has been given to the prevalence and impact of ACEs for staff working with people with intellectual disabilities. Method: Participants were staff employed by agencies that care for people with intellectual disabilities. An online…

Recent COVID-19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. Aim: The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. Methods:…

Background: Individuals with Down syndrome are known to have high rates of hearing loss, but it is unclear how this impacts their ability to communicate and function in real-world environments. Methods: Sixteen English-speaking and Spanish-speaking mothers of individuals with Down syndrome ages 6-40 years participated in individual,…

Background: Young adults with intellectual and/or developmental disabilities lack access to mental health supports. Peer-delivered services may fill this gap. We adapted a theory-driven and evidence-based peer mentoring intervention for virtual-delivery and investigated its acceptability and participants' preliminary response. Methods: Twelve…

Background: Williams syndrome anxiety research predominantly focuses on disorder prevalence and symptomatology, categorised using standardised mental health classifications. However, the use of these assessments may not fully capture the phenotypic features of anxiety in Williams syndrome. In this study, we examined characteristics of anxiety…

Background: Individuals with Down syndrome are particularly vulnerable to COVID-19 because they are recognised as significantly immunocompromised. Yet their voices regarding their lived experiences of pandemic lockdowns have not been sought or heard. Aim: This study aims to describe the lived experiences of people with Down syndrome during the…

Background: Parents with intellectual disability are vulnerable to parenting stress and overwhelming life events. The COVID-19 pandemic constitutes a potentially overwhelming event, but there is little knowledge concerning the effects on parents' caregiving. The present study aimed to fill this gap. Method: Semi-structured interviews with 10…

Background: Relationships between dynamic risk factors for externalising problem behaviour and group climate were investigated in 151 adult in-patients with mild intellectual disability or borderline intellectual functioning in a Dutch secure residential facility. Method: Regression analysis was used to predict "total group climate…

Although interactions among parents and Youth with Mild Intellectual Disability (MID) may be stressful at times, most studies focus on the effects of stressful interactions on the parents. This study considers the Youth's perspective -- particularly their beliefs about the reason for the parent's actions as well as how they would respond in the…

Background: The diagnosis of intellectual disability in children can produce complex grief-related feelings in their parents. Previous studies have focused on the moment of the diagnosis or the early life of the children, and little research has been conducted on their feelings of grief in adulthood. The objective was to analyse the process of…