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: 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: 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: The COVID-19 pandemic has had a negative impact on the mental health of people with intellectual and developmental disabilities. Numerous pandemic-related stressors experienced by people with intellectual and developmental disabilities may have impacted their ability to thrive, which has been linked to mental health outcomes. The…

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…

Introduction: The measures implemented to manage the COVID-19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers. Method: Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online…

Background: Single-parent families with children with disabilities need greater attention given the notable increase in their number and their additional difficulties. Single parents in East Asian countries, especially, may face greater risks than their peers elsewhere, given the region's unique cultural background. Method: The study used a mixed…

Background: The Reducing Disability in Alzheimer's Disease in Kansas City (RDAD-KC) intervention has been shown to improve the health of individuals with dementia and caregiver dyads. This manuscript reports the results of implementing the RDAD among individuals with intellectual disabilities and caregiver dyads. Methods: Nine community agencies…

Aim: This study analysed the impact that COVID-19 and the response measures implemented by the Spanish Government have had on families of individuals with intellectual and developmental disabilities. Method: Data on 323 family members (M = 52.3 years old; SD = 10.5) were collected through an online survey, which was focused on analysing…

Background: Existing research has predominately focused on dyadic relationships in families of children with intellectual disabilities. The aim of this study was to build on emerging literature exploring triadic relationships between a mother, sibling, and child with intellectual disability, investigating how they influence each other's…

Background: Providing long-term care to an adult relative with intellectual disability can impact negatively on caregivers' health and well-being. Methods: Data were collected via online and postal questionnaires on 110 family carers' physical and psychological health, family stress and perceived positive gains from caring. Psychological…

Background: Previous studies have focused mostly on the negative experiences of parents of children with Down syndrome. We aimed to explore both the stressful experiences and coping strategies of parents from a non-Western country. Methods: Twenty-six parents of children aged 8-48 months with Down syndrome were included. Semi-structured interviews…

Background: The psychological status of caregivers of individuals with intellectual disability and psychiatric illness (PI) is important for effective management. The aim of this study was to examine the psychological status and its relationship with coping styles among these caregivers. Materials & Methods: Caregivers (N = 80) of individuals…

Background: The intellectual disability field has learned about the lives of people with intellectual disabilities (ID), largely from the perspective of their family and caregivers. Information from caregivers has been critical to scientific advancement, especially when caregivers are engaged on behalf of individuals with significant language…

Background: Knowledge of the impact of affiliate stigma on the wellbeing of caregivers to children with specific learning disability (SLD) in India is limited. To fill in this gap in knowledge a cross-sectional quantitative study was undertaken to assess the impact of affiliate stigma on the psychological well-being of mothers with children with…